Medical Misfit or Free Agent

I used to be a medical misfit.

After a combined almost 40 years in healthcare, nursing and medical practice, I indeed used to think that I was a medical misfit. In the past, when I attended conventional medical conferences, I always had this sense that I didn't "fit" in. When I attended naturopathic or alternative medical conferences, I also had this sense that I didn't "fit" in. It used to bother me. It no longer does because I have changed my perspective. I'm not a misfit anymore, I'm a free agent now.

Both the religiosity of science and the religiosity of nature philosophy, for me, never trumped that which was most important and most effective for the patient.

I have always had one bottom line with my approach to medicine: help the patient maximally, with a best guess at the most minimal risk possible. Any assessment of risk will always be a best guess, even when good science or good common sense guides the decision-making processes. This is because one size does not fit all.

In my free agent status, these are the most important aspects in my approach to medicine:

  • EBM (Evidence Based Medicine) as per Dr. James McCormack PhD. I LOVE this guy's stuff:

 

Numbers Needed To Treat and Numbers Needed To Harm as per The NNT, looking at all of the scientific studies with a discerning eye from a viewpoint of clinical relevancy. Without looking at this data, science-based medicine has diminished use.

  • One Size Does Not Fit All. Other than the fact that we all change and we all die, it's the only other truth I know for sure.

I like being a free agent and I'm not about to sign up anywhere just yet . . . if ever.

The Art of Medicine

http://www.youtube.com/watch?v=5cvHgGM-cRI

Actually, I could have called this blog "Dr. Pamela Wible MD", and it would have been just as accurate.

Dr. Wible is a general family physician practicing in Oregon, who, along with her TED talk, has also written a book called 'Pet Goats and Pap Smears'.

Every physician must read this book, for their own health and humanity.

Every patient must read this book, so that they can give it to their own physicians.

Pamela is the extremely feminine version of a cross between Patch Adams, Bernie Siegel and Seinfeld's Kramer.  She is an incredible mix of zany, hilarious, beyond loving, and real;  I mean really real.  Her unique authenticity is unparalleled in any health practitioner I have ever come across in person or in written word.

This book is worth getting just for reading the section alone, entitled "My favourite phone message".  When I reread it even now, I still laugh.

The true stories in this book are filled with compassion, laughter, sadness and most of all, loving authenticity.  As I watched the TED talk and read her book, it was so very clear to me that the relationship Pamela has with her patients and the physicians she supports, is built on profound trust and love.  The flavour of the medicine she delivers to her patients, and the lifeline she extends to her colleagues, comes with the added bonus of this slightly altered 1 Corninthians 13 verse:  Love is patient, love is kind, it does not envy, it does not boast, it is not proud, it does not dishonour others, it is not self-seeking, it is not easily angered, it keeps no record of wrongs, it rejoices with the truth, it always protects, always trusts, always hopes, always perseveres, never fails, - and is creatively zany.

I remember going through naturopathic medical school, and a classmate verbosely marveled at how there was such an incredible creativity to the art and practice of medicine.  Frankly, back then, I didn't see it at all.  Twenty-five years later, I still didn't see it, until I saw and read Pamela Wible in action.  From the gift-basket offerings she gives out if she is late for patient appointments, - to balloons and lipstick kisses just-because, - to pap smear parties, - and to even the contemplation of a clinic pet goat, - after learning about her, I had a change of heart in the way I saw the possibilities for creativity in the practice of medicine.

While I can't say that I have ever brought any profound creativity in my approach to medicine over the years, I am blessed that there have been many patients who have trusted me enough to have brought their own brand of creativity and laughter to my practice.

Many years back, I was almost rolling on the clinic floor with laughter.  So the story goes:  I'm administering intravenous therapies to a room full of patients.  While I'm taking the blood pressure of an older gentleman, he whispers to me in a serious tone, "Kathy, I think you'd better go and check your bathroom".  With a concerned look on my face, I quickly make my way to the bathroom.  There, I see a huge pile of poo on the floor beside the toilet.  My brain is racing a million miles an hour.  OMG.  Which patient did that?  Is he or she that sick and missed the toilet?  I quickly do an internal mental scan:  everyone's vitals are good, everyone's level of consciousness is good, no one has any disconcerting symptoms.  Who the heck did that?  I am worried sick and I quietly remain in the bathroom trying to figure this out.  I decide to clean the mess up before I head back to the treatment room.  Donning my latex gloves, I proceed to pick up the poo with paper towels.  Immediately upon lifting the feces, I realize that it's a realistic plastic dog poo replica.  The joke is on me, and when I start to laugh, the entire treatment room breaks out in laughter.  The older gentleman says that when he saw the plastic replica on his trip to Las Vegas the month before, he thought of me.  As funny as that sounds, I saw this as an incredible compliment to how comfortable he felt with me in order to have played his practical joke.  All of the other patients, after their raucous laughter and being in on the joke, were feeling exceptionally well.  I'm sure that it had little to do with what was infusing in their IV bags that day.

Creativity isn't the only reason I am enamoured with Dr. Wilbe's work.  Her authenticity is mesmerizing.  In Pet Goats & Pap Smears, there is a section called "The Raw Truth".  In it, Pamela queries why she is a doctor.  These are the most honest and profound words I have ever read, coming from a healthcare practitioner.  Buy the book and read it.  You will be amazed.

In trying to answer for myself the question of why I am a doctor, I wonder if I will ever come close to expressing a fraction of the authenticity exuded by Dr. Pamela in "The Raw Truth".  Beyond my reasoning for having entered the field of naturopathic medicine in the first place, I suppose I would say that I continue to practice medicine because of my belief in the best quality of life for all people, including myself.  I'm pretty much a bottom line person, focused on patient outcomes, wellness, well-being and the success or failure of those, no matter the type of treatment administered.  I am not married to a particular medical philosophy, science-based, or otherwise.  I am married to the idea of the best quality and longevity of life possible, that any type of medicine can offer.  Failure of treatment is what initially led me to explore naturopathic medicine, after having been steeped in conventional modalities for a decade previous to that.  And later on, failure (and lack) of treatment for my mom who died of ALS, at times, still breaks my heart to this very day.  And now, failure of treatment in the occasional patient who has sought out every form of medicine on the planet to no avail, and then has landed on my doorstep with hopes that I cannot fulfill, leaves me empty.  I am a doctor who has not yet realized what Dr. Pamela Wilbe knows to be true:  that medicine and healing are a journey and not endpoints.  She has learned, preached and written about, what I long to learn in medicine:  that sometimes love is enough.  People die, people become ill, people are in pain, and occasionally, there is nothing anyone can do about it.  In these cases, love has to be enough.  I'm not there yet.  I'm still traveling that road.

I can't leave this blog without mentioning the section in her book called "Bambi Syndrome".  As a new born-again dog lover, I cried while reading this chapter.  To my 2 friends who are the most stellar dog owners in the entire universe, Pamela rivals your commitment to man's best friend.  You both have to get this book just to read this chapter!

For me, Pamela serves as a model for the practice of medicine.  While I have no pet goats, I do have a very cute goldendoodle that looks like a sheep and comes with me to the office each time I'm there.  And I stopped doing PAP smears decades ago when I realized that it was more affordable for patients to let the Canadian government pay for this type of screening done by MDs than to pay an out of pocket expense to me.  I do however, ensure that all women are up to date with their PAPs, and for those women who "do not believe in PAPs", I counsel them for up to an hour at times;  - some women have a change of heart and some do not.

Medicine is replete with science and necessarily so.  Medicine can also be replete with humanity.

If there was a Nobel Prize for Loving Authenticity in Medicine, Dr. Pamela Wible MD would be a shoe in.

 

ALS Treatments Part 4

 March 31st of this year will be the 15th anniversary of my mom's death. ALS took her life. It is a despicable disease. I've written about it for the past 2 years, here, here, here, here, and here.

I write this blog, - especially this ALS blog – for my family. In the (unlikely) event my maternal grandmother was misdiagnosed and she actually had ALS, I want my loved ones to know what is happening in the world of ALS. By keeping up to date with information, I honour my mother and I honour my family.

Even though this is a personal blog that I write, I am surprised to see people in 144 different countries from around the world click on to my website. I do not advertise my blog since it is a personal one. As of this writing, there have been 1004 views for the ALS Treatments Part 3 blog, 928 views for the ALS: A Tough Road blog, 666 views for the ALS Treatments Part 2 blog, and 507 views for the ALS Treatments Part 1 blog. When I see this, I am sad.

I am sad, because it means that if pALS and cALS ended up here reading this blog, it likely means that they are desperate for information. I know the feeling. My heart goes out to all who read this.

The best review of ALS treatments in 2013 can be found here:

http://blogs.als.net/post/2014/01/15/ALS-2013-A-Year-in-Review.aspx

Not much is new.

For those that believe in the scientific process and would like to donate their lives to this cause, there are numerous clinical trials to participate in from around the world.  They consist of pretty much the same things for the past while now: stem cells, immunosuppressants, immunomodulators, an irreversible MAO inhibitor, a monoclonal antibody, a tyrosine-kinase inhibitor, yada, yada, yada:

http://www.als.net/ALS-Research/ALS-Clinical-Trials/

Neuralstem's poster boy, Mr. Ted Harada, gives pALS hope with the very delicate intraspinal stem cell procedure he has received twice now:

http://www.totalbiopharma.com/2013/12/09/video-ted-harada-als-patient-perspective-stem-cells-regenerative-medicine-congress-2013/

However, neurologist Dr. Jonathon Glass, expressed a more realistic view of hope, and stated that this particular stem cell procedure would hopefully help patients decline less rapidly:

http://www.youtube.com/watch?v=zMQISB5iL-g

This stem cell trial as well as other stem cell trials using intrathecal mesenchyal stem cells are only in Phase II clinical trials right now. It is still early yet to know the outcomes. Either patients and researchers are keeping the results hush-hush, or there are no more poster boys to be found in these scientific studies, and the best that is now hoped for, is a slow demise rather than a rapid one.

If the goal is slow progression, there are umpteen anecdotes in pALS who have come up with their own supplement cocktail to try and stave off deterioration in order to create a slow demise rather than a rapid one for themselves. The difference between the scientific approach of clinical stem cell trials or drugs, and an experimental cocktail attempted by separate individuals, lies in the notion of “proof”. In a disease where the progression is highly variable from person to person, and the powerful placebo of hope is rampant in anything that is tried – be it nutraceutical or clinical drug – science demands proof of efficacy.

145 years in, and there is still nothing efficacious in the world of ALS treatment. Ritulek fits into the nothing category. Is it any wonder that people take their lives into their own hands and search out other answers after having been given a death sentence? People respond to this challenge in their own unique ways.

One way is to participate in clinical trials. Another way is to try and find a combination of nutraceuticals that could be helpful. The very best summary I have ever read regarding supplement protocols and ALS, can be found on the ALSTDI forum. The post was written by a man named Dave J.  I have not asked his permission to use it on this blog, however, it is freely accessible on the above mentioned forum, but you must log-in to view it.

For those who have wandered onto this blog and who are not family members, I repeat myself saying this:

Disclaimer: The following information contains my own personal and medical views regarding what I would hypothetically do for myself or a loved one if faced with this life threatening disease. In no way is it a recommendation for anyone with ALS to follow. It is always best to seek the advice of your medical care practitioner when undertaking any type of therapy; and preferably, a medical care practitioner who is open-minded, open-hearted and compassionate.

For my family:

Dave J's Proletariat Protocol for ALS

Some of what Dave J. writes is not unlike what I have been suggesting for the past few years. There are some things that I would alter in my recommendations from last year, and some differences I would recommend than what he has written in the “Proletariat Protocol”. Here's what I would do:

  • a ketogenic diet (healthy high fat);  a high quality protein diet;  no junk, no artificial crap, no refined sugar
  • a gluten-free diet (or grain-free diet, but only if body weight can be maintained or increased)
  • a low beta-sitosterol diet
  • lots of coconut oil, fresh vegetables and fresh berries
  • bio-identical hormones specific for your needs as determined by a 24-hour urine test
  • magnesium glycinate, taurine, B-complex (with 5-MTHF, P5P and methylcobalamin), ALCAR, DHA, lipoic acid and resveratrol
  • don't load up on antioxidants as this might squelch your body's adaptive responses; forget the Vitamin E and CoQ10
  • only consider TMG if your homocysteine level is elevated
  • IV glutathione and IV methylcobalamin
  • light weights and gentle exercise (somatics, qi gong, tai chi, yoga or stretching)
  • trust your own body to help you determine what is right for you: one size does not fit all

Added to my list this year:

  • zinc picolinate (mostly for the prevention of respiratory illnesses)
  • Berberine HCl
  • Boswellia serrata

Zinc is an interesting mineral that is presently being used for experimentation by patients who are conducting their own DIY trial.  Their underlying notion is a problem with copper toxicity:

http://alsanesthetics.org/copperstudy/pilotreport/freecopperstudy_report.html

http://alsanesthetics.org/research/2013-12-31-15-16-18/5-real-time-status-of-the-free-copper-trial

I sometimes wonder if any of the benefits experienced from this DIY experiment might be due to the fact that zinc inhibits copper absorption, helping some people with hypouricemia.  High serum uric acid levels are found in pALS men who have slower rates of progression.

Magnolia is a botanical I've used many times for patients with insomnia. I have not found it to be efficacious at all as a stand alone herb. As for its beneficial effects with swallowing difficulties, I have no clue. You would have to give it a whirl to assess its efficacy.

Do not use 5-HT unless you are also taking L-cysteine (or NAC), L-tyrosine and maca pruriens. (See Dr. Marty Hinz's work at NeuroResearch).  Better yet, don't bother taking it unless you need emotional support via nutraceutical therapy.  ALS is not a post-synaptic disease.

Curcumin is an interesting botanical medicine. It is highly recommended for all types of conditions because of its anti-inflammatory properties, and that is why pALS are taking it. There is much research on this herb for many other conditions, and yet I have never been impressed with its use as an anti-inflammatory agent in clinical practice. Even the Integrative Medicine website called Natural Standard gives this herb a rating of “C” regarding clinical efficacy for a long list of conditions; “C” meaning “unclear scientific evidence”.

On the other hand, an herb like Boswellia, which also crosses the blood brain barrier and decreases neuro-inflammation, is a much, much better anti-inflammatory in botanical medicine. I've been very impressed with this herb in clinical practice for other conditions, and the Natural Standard gives it an “A” (strong, positive scientific evidence), at least for osteoarthritis, and a “B” (positive scientific evidence) for asthma and brain tumours (with radiotherapy).

I would use Boswellia before I used Curcumin any day of the week. However, the former is a bit hard on the gut for some people, depending on how high in dosage you go.

Last year I talked about Echinacea. I would nix it this year and replace it with Berberis. Berberine crosses the BBB, it is known to decrease microglial inflammation, and it is an excellent botanical for the prevention of many types of microbial infections, especially in people whose respiratory system is compromised. For a wide variety of other conditions in clinical practice, Berberis is one of the best botanical medicines on the planet, IMHO.

I can't leave the topic of Curcumin without discussing a molecule called J147. This molecule is a synthetic extraction of this herb and 100 times more potent. The most amazing thing, is that an incredible man named Eric Valor (whom I have written about before), while being completely paralyzed on a ventilator and with only eye movement, has been able to create a company that will test this molecule on animals prior to using it on ALS patients. Simply, mind blowing!

PLEASE DONATE TO THIS WORTHY CAUSE HERE:

J147:  Therapeutic for ALS

Dave J. has listed the do's and don'ts of this illness pretty thoroughly in his "Proleteriat Protocol".

I would also add, not to bother undergoing any type of chelation therapy. 1) There is zero evidence it is helpful. 2) Many important minerals that are necessary for neuronal and muscular functioning are removed during the process. 3) There is no clear evidence that heavy metal toxicity is associated with ALS. 4) There is inadequate information as to whether a chelating agent crosses the BBB, or whether toxic metals are actually removed from neural tissue or redeposited from other tissues back into the nervous system during the chelating process.

Regarding the prevention of ALS, we do not know if this disease can be prevented, and therefore there are no known strategies. If I were to take a guess however, I would recommend that you, my family, do these few things:

  • reread my blog on “Grain Brain” and Dr. Perlmutter
  • avoid environmental toxins to the best of your ability
  • if you partake in an excessive amount of exercise (a marathon race, a 10 hour steep mountain hike, etc.), temporarily take some type of glutathione support immediately after the exertion; this could take the form of NAC, milk thistle, selenium, lipoic acid and resveratrol. With extreme exertion, I personally give myself a glutathione intravenous injection.

Over the past 2 years, on a forum called ALSTDI, I've read thousands upon thousands of posts written by the most incredible people I have ever had the honour and pleasure of reading. They are the heroes of this world. These are people who face insurmountable challenges everyday and come together on a forum to try and find solutions for a disease that has not even had one single solution for the last 145 years now;  solutions that have escaped the most brilliant and talented scientists in the world.

This will be my last blog on ALS. If I blog about this topic again, it will be because there has been some incredible break-through treatment that has been discovered.

I hope I will be blogging soon, however, I don't know . . . .

Hope and optimism are on the distant horizon, or right in our laps. It depends upon our perspective.

EDITED TO ADD (Nov. 28/15)

I’ve been following Dr. Marty Hinz’ work for the past 15 years, and have used it successfully for other conditions.

I’ve always thought that ALS was related in part, to some type of neurotoxic insult, and that is why I thought IV GSH was a good idea. GSH does not cross the BBB, nor does NAC. For chronic conditions associated with thiol collapse, L-cysteine is both inexpensive and crosses the BBB, which makes it a better choice for dealing with neurotoxic problems.

However, L-cysteine also transports methyl mercury across the BBB and thus selenium is used to counteract this problem.

5-HT and L-tyrosine are used to prevent neurotransmitter imbalances that can occur with using only sulphur amino acids, since eventually, L-cysteine can deplete dopamine and serotonin.

Long ago, I asked Dr. Hinz if any of his findings in his research would help those with ALS. He said no, because ALS is not a post-synaptic disease. But recently, I saw MND on his list of diseases that could (theoretically) be helped because they were diseases presumably associated with thiol collapse.

http://new.neurosciencemyths.com/n-acetylcysteine

I’m not naive enough to think this could be curative for ALS, but I do wonder if it could help just a titch? and maybe a lot in some people?

Just passing this on before I shut this blog down.

What's With People in Smithers Avoiding Wheat and Gluten?

unknown-1People in Smithers are very, very smart. Okay, that's the short answer to the question.

Actually it isn't just people who live in Smithers who are avoiding wheat and/or gluten and/or grain en masse.  It's pretty much global at this point.

The impetus of  this blog came about after I attended a medical conference this past weekend in Smithers.  The lectures were given by an assortment of professionals:  specialists, GPs and a pharmacist.

The first lecture was given by a general surgeon who travels to rural Smithers to administer necessary care.  He made a query and comment regarding the dumbfounding number of people in this town who have removed wheat from their diet.  "What's with that?", he rhetorically asked.  His tone was mildly derogatory, and his comments were followed by sarcastic snickers from the GPs in the audience.  These were the kind of snickers that clearly spelled out the phrase, "This is nonsense!"  (short of a definitively diagnosed celiac disease or an IgE-mediated wheat or gluten allergy).

I felt my face go red.  I don't easily blush from embarrassment, but I swear I was crimson at that point.  I knew that I had been a major contributor to this wheat-free, gluten-free and grain-free phenomenon in this town for the past 19 years.

The snickering was not unlike the, "This-is-nonsense!-snickering" sounds that I hear when I attend a naturopathic conference, and a speaker is making jokes about the reductionistic and suppressive approach of allopathic (conventional) medicine.

In trying to understand the flavour of this type of snickering, I imagined that I too would be guilty of engaging in "This-is-nonsense!-snickering" behaviour if I were to attend a conference about inflammatory bowel disease and sit through a lecture discussing the plausible efficacy of fecal transplants.

The truth is, that none of these topics are nonsense;  shoving someone else's poop up the butt could be helpful for some;  suppressing symptoms and reducing a patient to a body part in an acute crisis, is lifesaving;  and eliminating wheat or gluten or grain in many people without frank disease is unequivocally and beneficially life altering for many.

I now equate snickering to, "I haven't a clue".

And wouldn't you know it?  Coincidentally, the topic on the following day was a lecture about celiac disease and non-celiac gluten sensitivity given by a gastroenterologist.

I will make a confession here before I go on.

Until this past weekend, I used to have a prejudice against gastroenterologists.  Previously, I had this stereotypical image of a cranky, old, bloated (both in the head and gut) specialist, with a waiting room full of people who would be better served by going to see a naturopathic doctor.  This exaggerated stereotypical specialist would tell every patient he saw, "your disease has nothing to do with what you're eating".  Meanwhile, any patient could have changed her diet dramatically and put her own disease into complete remission, yet this bloated doc would still be condescendingly using verbal diarrhea to basically repeat his same one-liner to his patient, "your disease has nothing to do with what you're eating".

This past weekend, my long-held stereotype of gastroenterologists was pleasantly and completely shattered.

First off, the speaker was stunningly beautiful, slim and young.  She was well-spoken, and her manner was very sophisticated, absent any type of arrogance.  She talked about celiac disease  and the risks of not obtaining a definitive diagnosis for this condition.  She talked about latent and silent celiac  patients who have not yet displayed abnormal biomarkers.  She talked about the many patients who did not have celiac disease but are gluten sensitive instead and are known as non-celiac gluten sensitive (NCGS).  And she also explained that the reaction to gluten in NCGS patients might not be because of an intolerance to gluten, but rather, an intolerance to short chain carbohydrates as seen in a high FODMAP diet.

When she was asked about people where celiac disease was ruled out, yet experienced dramatic improvements in their health with the removal of wheat or gluten or grain, her response to these patients was, "Great.  Keep going".

My view of gut specialists did a 180 degree turn right then and there.  She was a specialist who knew her stuff and beyond.

The take home messages of her lecture for me, were these following points:

1)  a small bowel biopsy should always follow an elevated tissue transglutaminase IgA test to obtain a definitive diagnosis for celiac disease

2)  if celiac disease is strongly suspected, a serum IgA should also be done along with a tissue transglutaminase test, since low serum levels of IgA can render the latter test negative

3)  a patient must be eating gluten for 6 - 8 weeks prior to blood work (non-genetic testing), since avoidance of this food can render the test negative

4)  gluten does not need to be eliminated from the diet for genetic testing, and a positive result does not necessarily definitively conclude a diagnosis of celiac disease, yet a negative result can rule it out

With the incidence of celiac disease being 1 in 100, it is crucial to determine which people actually have this disease.  The importance being, that many complications can develop if these patients do not adhere to a very strict gluten-free diet;  bowel cancer and lymphoma being the most dangerous sequelae.

Certainly, all people with gastrointestinal symptoms who are experiencing weight loss, anemia and altered bowel function should at the very least, always be tested for celiac disease.

It's everyone else in the gray zone where the challenge remains.  This gray zone consists of silent/latent celiac patients who have the genetic predisposition to go on to develop the full-blown disease and whose biomarkers are negative, all the way to people with NCGS.

There are no easy answers.  Many people take themselves off of gluten and wheat because of the popularity of books like the Wheat Belly and Grain Brain, and notice incredible changes in their health, well-being and quality of life.

I have recommended the elimination of wheat or gluten or grain to many patients who have not presented with a "clear celiac picture", but because they have displayed elevated IgE or IgG4 antibodies to these substances.  IgA antibodies to gliadin is another type of test that can help determine if one has NCSG.  Electrodermal testing can also aid in trying to determine those with NCSG, and breath testing for SIBO may provide some clues as well.

This all begets the question, should everyone be screened for celiac disease?  My answers is both yes and no.  Screening everyone for this disease would place an unreasonably high financial burden on our Canadian health care system, and the allocation of these funds could be best served elsewhere, IMHO.  So no, for that reason.

However, I do believe that everyone who chooses to eliminate gluten or grains from their diet without a definitive diagnosis of celiac disease should take on the responsibility of financially paying for their own testing.  A lab in Canada called Rocky Mountain Analytical will do this for those who aren't squeamish about poking their own fingers.  For the adventurous who choose to do this on their own, you MUST be eating gluten for 6 - 8 weeks prior to testing.  If your test shows positive for tissue transglutaminase A, do not remove gluten from your diet, but head to your medical doctor for further testing and a definitive diagnosis.

Personally, I'm waiting for Cyrex labs to come to Canada (which rumour has it will be coming in a few months), for the most comprehensive gluten test available, and is recommended by Dr. David Perlmutter MD.

Some people wonder, if removing gluten and grains from their diet makes them feel so damn good, why bother testing in the first place, and especially with something as invasive as a small bowel biopsy.

The answer lies in the compliance and strictness of gluten removal.  Not being strict with the diet if you are celiac, over the long haul, can be fatal.  Not being strict with the diet if you are NCGS, is a big unknown regarding future complications and the development of lethal conditions.  However, Dr. Perlmutter in Grain Brain, uses scientific and epidemiological studies to counter this last statement, and believes that the damaging effects of gluten and grains are much more known than we are led to believe for the non-celiac population.

I will share with you, 3 extreme examples of celiac disease to illustrate my point.

I saw a woman in her mid-50s with typical general complaints:  fatigue, mild dyspepsia and mild depression.  All of her blood work was normal, except for a low ferritin that was still within normal range.  She did not present with frank celiac symptoms and understandably, her MD did not do a tissue transglutaminase test on her at that time.  I also did not consider doing one.  After I saw her, I did an IgE and IgG4 food allergy/intolerance test of 90 foods and found her to be positive to many substances, one being gluten.  Her health dramatically improved with the elimination of the foods she tested positive for.  She was compliant with this dietary regime for less than a year.  Many years had past and she resumed her pre-food-testing diet.  Her symptoms returned and she told her MD that she felt better off of gluten and dairy products.  Based on that information, this MD proceeded to do a tissue transglutaminase test, which was found to be positive.  This abnormal finding was followed up by a conclusive positive small bowel biopsy.

This is a case where an earlier definitive diagnosis may have assisted in advising this patient of a strict no-cheating policy when it came to gluten, thus helping her avoid a few extra years of unnecessary discomfort and illness.  However, as seen in the next case, compliance is an issue even in those who have been definitively diagnosed with celiac.

A woman in her 70s was definitively diagnosed with celiac disease in her youth, but for whatever reason, chose not to be compliant with a gluten-free diet.  She died of lymphoma, very likely related to poor dietary regulation of her celiac disease.

So what is more important?  A definitive diagnosis?  Or compliance?  Both are equally important.

Then there is the extreme case that neurologist, Dr. Perlmutter describes in his book, Grain Brain.  A patient was misdiagnosed with ALS and ended up finding out that he was really only a celiac patient.  Can you imagine going from being told that you have one of the most horrible diseases on the planet, and that you'll die in 2 - 5 years where you won't be able to move anything but your eyes, and you won't be able to breathe without a machine - going from THAT, to just having to remove gluten from your diet?!?!?  OMG.  If that was me, I'd be kissing the ground and thanking any type of deity I believed in (God, Allah, Buddha, Krishna, Darwin, Science - any God), and thanking this deity that the only thing I had to learn was how to make delicious gluten-free meals and which restaurants to avoid, instead of having to decide in a few years whether or not I wanted a breathing machine and 24-hour nursing care to keep me alive.

NCSG people also have experienced neurological deficits as seen in this study.  In practice, I have also seen many types of neurological symptoms, even those that looked like multiple sclerosis, disappear with the elimination of gluten in NCSG patients.

My family and I have been gluten-free for 20 years now as I have previously mentioned in this blog.  After listening to the gastroenterologist give her talk, I asked myself if I was best serving all of the patients I see, as well as my own family.

With my husband, he is the easy one.  There would be no reason on earth to do a celiac test on him because he is more strict about being gluten-free than any celiac patient I have ever seen, and he will continue to do this for the rest of his life because he feels much better for having done so.

With myself, I have little reason to believe that I have celiac disease and I eat gluten very rarely in the form of filo pastry once per year.  However, I enjoy how I feel when I avoid both gluten and grains from my diet.  With my older daughter, her experience is similar to my own.  I will likely do genetic testing on the both of us, and only if the results are positive, will I pursue further testing for celiac disease.

My younger daughter is a different story.  She was extremely ill for the first 2 years of her life until I did an IgE and IgG4 antibody food test on her and removed the offending foods, one being gluten.  She defied her pediatrician's predictions of growing up to be a child with life-long respiratory problems, and continues to experience remarkable health to this day.

When she was 6 years old, her new pediatrician in Smithers did extremely comprehensive testing on her, and one of the tests he did was a tissue transglutaminase for celiac disease.  The test was negative, but she had been gluten-free for 4 years prior to the test.  Therefore, it was not a valid test for her at that time.

Now, as a young adult, she still is pretty much gluten-free, but has gluten foods about once per week.  She is the exact type of person I would want to definitively know whether she has celiac disease or not.  Why?  Because if she is not strict and she has celiac disease, she could be open to a whole host of potential problems like osteoporosis, cancer, neuropathy, depression, anxiety, reproductive problems and birth defects.

When Cyrex Labs comes to Canada, I will recommend that my youngest eat gluten consistently for 6 - 8 weeks, and then do these tests.  Yes, it will likely be a very crappy 6 - 8 weeks for her.  Hopefully her health won't plummet too terribly.  After all, it's been 18 years, and we have never challenged her system with gluten for more than a few days at a time here and there, from the age of 2 on.

To wrap up this entire discussion, there is no one size that fits all in diagnosis, diet or disease testing.

There are many people who remain healthy and vibrant while eating wheat, gluten and grains and do not have NCGS.

However, many other people in Smithers and around the globe have figured out that one size does not fit all, and have used their own personal laboratories; - their own bodies - to obtain valuable, observatory data from.  This is what I call smart medicine.  The caveat here, is please do this wisely.  You do not want to end up removing gluten from your diet in a half-ass non-strict way if you are sitting with a potentially life-threatening disease.

The Great Cholesterol Myth

great_cholesterol_myth_graphic_1815631625_588968144I attended a naturopathic medical conference this past fall, and the best lecture hands down was one given by Dr. Stephen Sinatra MD. The lecture was entitled: “Metabolic Cardiology: A New Nutrient Therapy for Cardiovascular Disease”. This lecture was inspiring and full of knowledge that I considered to be “truth” when it came to illness and disease. Much of the lecture contained information that coincided with the way I have practised medicine for the last few decades now. When information rings true, it just rings true. Scientific studies are important when trying to determine best plan of care, and so is plain old common sense. I just finished reading the book that Dr. Sinatra co-wrote with Dr. Jonny Bowden, PhD, entitled, “The Great Cholesterol Myth”. Dr. Sinatra also has a valuable and informative website called Heart MD Institute.

When a highly respected neurologist (Dr. Perlmutter of Grain Brain), and a highly respected cardiologist (Dr. Sinatra), are saying basically the same things regarding nutrition, the prevention of disease, and the role of cholesterol as it relates to illness, this information cannot be ignored. Both books provide reams of solid scientific studies that support each of their opinions and recommendations;  one from a neurological point of view, and one from a cardiovascular point of view.

From a metaphorical perspective, when the mind is open (brain/neurology) and the heart is open (cardiology), it is much easier to ascertain what is truth. As well, when scientific study after scientific study, shows similar findings in very different disciplines, truth is within reach. And from a physiological point of view, the brain and the heart are in constant communication like a “heart-brain hotline” as is described in “The Greatest Cholesterol Myth".  When a heart-mind connection is in sync, there is truth in them thar' hills.

If you or someone you love has cardiovascular disease, or you have a family history of heart problems, this is probably the most comprehensive and entertaining book you will ever read on the subject. I laughed out loud so many times while reading this book because the authors have a great sense of humour. They explain complex concepts in very simplistic language and in analogies that are really quite clever. I will never see a free radical the same way again, but only as a hormone-fuelled college sophopmore trying to hit on a couple who are in a stable relationship. The book is loaded with awesome analogies.

Here are some highlights from the book:

  • elevated cholesterol is a non-existent disease and the lipid hypothesis is a crock
  • regarding cholesterol, small dense LDL (type B) particles are the problem and saturated fat helps combat these dangerous molecules
  • Lp(a) (lipoprotein a) is one of the most devastating risk factors for heart disease and it is difficult to treat (i.e. no drug therapies address this risk factor)
  • sugar is the problem not fat;  in fact sugar, stress, inflammation and oxidation are the problems
  • the cholesterol measurements you get at your MD's office are outdated and of limited value
  • instead of getting the regular cholesterol measurements done, the following tests are far more valuable in assessing your cardiac risk profile:  LDL particle sizes, hs-CRP, fibrinogen, serum ferritin (iron), Lp(a), and homocysteine.
  • high levels of HDL ("good" cholesterol) mean nothing if you don't know if it's the good-"good" kind or the bad-"good" kind
  • high levels of insulin can increase your blood pressure and cholesterol, and insulin is related to sugar intake
  • many studies show that those with low cholesterol die sooner and experience many other problems

As well, an entire chapter is devoted to discussing and managing stress, since the stress response can save your life or kill you.  Stress and elevated cholesterol go hand in hand.  It's worth getting the book for this chapter on stress alone.

After reading the chapter on stress, there were 3 take home messages for me:  1)  meditation  2)  community, and  3)  creation of disease from the perfect storm.

Meditation.  For me, meditation has always been freakin' boring.  I've tried all kinds:  transcendental meditation, guided meditation, silent meditation, etc.  They are way too boring for me because my mind is always so active.  My friend Monika is in the process of completing a 10 day Vipassana meditation retreat, where she has been meditating all day long for 10 days in a row.  Can you imagine?!  In my mind, that would take incredible gumption and fortitude to do something like that.  Being thus inspired by my friend, and being thus reminded of Herbert Benson MD's work with "The Relaxation Response" (as discussed in chapter 8, "Stress:  The Silent Killer"), I have committed to meditate 20 - 30 minutes twice daily from here on out.  My New's Years resolution has begun early, because I know that the benefits that await me are enormous if I can persist with a regular disciplined meditative practice.

Community.  Again, I was reminded by the wonderful study done long ago in Roseto, Pennsylvania, where heart disease was shown to be much reduced in this town compared to the national statistics.  Even though the men in Roseto worked in underground mines, smoked, and ate foods fried in lard, they had strong family ties and were nourished by community.  Connection and community was the reason for the low incidence of heart disease in this town.  The sense of community, belonging, and support, cannot be underestimated when it comes to the promotion of great health.  I feel very blessed to be part of many communities;  my nuclear family, my extended family including friends and relatives (that put up with all of my boring blogs), my BV backpacking group, my naturopathic medical community, and the Bulkley Valley community where I live.  I am grateful for these connections.

Creation of disease from the perfect storm.  Sometimes toxic influences, - be they from food, or from water, or from air, - can be tolerated and adapted to.  Add stress into the mix, and illness takes on a whole new dimension and level of creation.  For more info, read about the frog experiment in chapter 8, or in this article from where the experiment derives.  (It's much more fun to read the chapter!)

The authors of the book also have a chapter on nutrient supplements for heart disease prevention and treatment.  This chapter is a very specific and excellent resource to use, should you ever need this valuable information.

The chapter on nutrition does not lay out a blow-by-blow diet plan as found in "Grain Brain", but specifically states the Do's and Dont's (or the "Eat it" and "Dump it") of managing healthy eating.  The ideas are very similar in both books:

  • go wild on the veggies, especially green leafies and cruciferous vegetables
  • berries, and other fruits in moderation
  • nix the sugar, processed carbs, processed junk, processed meats, trans fats and omega-6 oils
  • nix the pastas, breads, cereals, cookies, cakes, doughnuts, pastries, white rice and crackers
  • go heavy on the olive oil
  • wild Pacific salmon, grass-fed beef, nuts, dark chocolate, tumeric and red wine are good to go

The differences in both books regarding nutrition are small.  While Sinatra and Bowden acknowledge that gluten sensitivity may be problematic for some people, Perlmutter takes fire and aim at gluten.  Sinatra and Bowden like beans, but Perlmutter, less so, because of the carb load.  Perlmutter's self assessment questionnaire lists not drinking wine as a risk factor for neurological problems, and while Bowden and Sinatra acknowledge the benefits of polyphenols found in red wine for cardiovascular health, they also state that if one does not drink, now is not the time to start!  Thank you Dr.'s Bowden and Sinatra.

So instead of resorting to getting my neurological and cardiovascular health-fix from booze, I've decided to get my concentrated red wine polyphenols in capsule form.  This capsule also contains 100 mg of an antioxidant that both the 'Grain Brain' and 'The Great Cholesterol Myth' believe to be fabulous for the brain and the heart respectively.  That anti-oxidant is called trans-resveratrol.

Regarding fats, all three authors like saturated fat, monounsaturated fat, and omega-3 fatty acids, and don't care much for omega-6 pro-inflammatory fats.  Perlmutter drives the message home with much more gusto and goes out on a limb to recommend a high healthy fat diet.  And obviously, being a neurologist, he would.  The brain loves fat way more than the heart does.  However, "The Great Cholesterol Myth" has the following chart on page 75, which, along with avoiding sugar and junk completely, is the most important nutrition suggestion in the whole book (IMHO):

Screen shot 2013-12-11 at 8.34.05 AM

(I hope I'm not infringing on any copyright issues since I copied it from Amazon.com).

Anyway, there you have it.  If I have changed one thing in my diet, it is eating much, much more of these healthy fats on a daily basis.  (That is, eating more saturated fats, even more monounsaturated fats and more omega-3 fatty acids, and not eating any omega-6s).

Regarding eggs, dairy and poultry, Sinatra and Bowden don't say much.  Perlmutter highly and regularly recommends eggs, as well as goat cheese and some hard white cheeses.

Like I've said many times on this website before, one size does not fit all.  After common sense basics and perhaps some food intolerance/sensitivity testing, personal experimentation regarding what works best for each person trumps just about everything.

The last topic I'll cover is statins.  (These are minimally useful drugs, unlike other useless cholesterol-lowering drugs like fibrates).   I'll try not to belabour this topic, suffice it to say the following:

  • if you are on a statin drug or your doctor wants to put you on a statin, read this book first
  • statins are way over-rated and can cause lots of problems;  the reason they work for a select few is not because of their cholesterol-lowering effect, but because of their anti-inflammatory properties
  • statins prescribed for children, the elderly, and for most women, is bad medicine
  • statins reduce the life-giving molecule called cholesterol, that is needed for so many crucial functions in the body
  • if you must take a statin, make sure you're also taking Coenzyme Q10 100 mg twice daily, and Vitamin D as measured by blood tests
  • Canada is much more on the ball than is the US when it comes to not prescribing statins for the primary prevention of heart disease (i.e. a person who has high cholesterol but has never had a heart problem before)

Here's what Dr. Sinatra says on his website regarding those people who could benefit (though not necessarily will benefit) from statin drugs:

"I stand firm by my opinion that statins should be prescribed only to men and women with advanced cardiovascular disease, and who do not have diabetes, and individuals with genetically-based high LDL cholesterol that can hasten coronary artery disease. For these people, the benefits outweigh the risks, but it is mostly for the therapeutic anti-inflammatory value of statins and not any cholesterol-lowering effect."

That is exactly what I believe also.

The new guidelines for the treatment of cholesterol to reduce heart disease as put forth by the American College of Cardiology will have more physicians prescribing more statins to more people.  Sheesh!!  What a freakin' disaster-waiting-to-happen that will be - for both brain and heart, - not to mention the immune system, joints, muscles, sexual function, etc.

Canada has it bang on though, thank God.  In his article entitled "It's time to question the new guidelines on cholesterol drugs", health journalist Andre Picard reminds us that Canada has not adopted these new guidelines.  Yay Canada!!  In this new article in BMJ, "Should people at low risk of cardiovascular disease take a statin?", it is plainly obvious that the benefits do not outweigh the risks.

In reading both the "Grain Brain" and "The Great Cholesterol Myth", I have changed my thinking on a few things.  I'm not going to brag about my 'perfect' cholesterol levels anymore, that range anywhere between 3.6 - 4.4 mmol/ (140 - 170 mg/dl).  No.  I am now actually aiming for much higher cholesterol levels, and even though dietary cholesterol does not create a huge impact on overall levels, it can have a minimal influence.  After reading both books, I have dramatically increased the volume of my healthy fat consumption using the foods in the chart above.

The last change I'm going to make, is to stop asking patients to get their cholesterol levels checked by their primary care physicians.  I will start doing tests myself, measuring values that are of significance to cardiovascular risk prevention, like LDL small density particles, oxidized LDL, Lp(a), Apolipoproteins A & B, homocysteine, hs-CRP, plasma Coenzyme Q10 and red blood cell magnesium levels.  I had done this in the past very sporadically and infrequently, but now I know, that it's the only reasonable way to go.  Here's a sample report:

Screen shot 2013-12-15 at 10.53.50 AM

I will start this coming Monday, beginning with myself and Bill.

Cholesterol is really a beautiful molecule and the demonizing stories created around it are akin to the evil villain myths of yesteryear.

Grain Brain

slide2OMG.

FINALLY.  FINALLY.  FINALLY.

I HAVE FINALLY BEEN VINDICATED, AND INFORMATION THAT IS PLAIN OLD COMMON SENSE HAS GONE MAINSTREAM.  FINALLY.

Sorry for yelling.  I'm just excited.

Neurologist Dr. David Perlmutter M.D., wrote a book that was just released this fall:  "GRAIN BRAIN:  The Surprising Truth About Wheat, Carbs, and Sugar - Your Brain's Silent Killers".

If you have Type 2 diabetes, READ THIS BOOK.

If you have a blood-related family member with a neurodegenerative disease, especially Alzheimer's disease, READ THIS BOOK.

If you have depression, anxiety, ADHD, chronic headaches, insomnia, epilepsy, movement disorders, digestive symptoms, arthritis, Tourette's syndrome or schizophrenia, READ THIS BOOK.

If your cognitive function and memory are declining as you age, READ THIS BOOK.

If you are overweight, READ THIS BOOK.

If you have no problems at all, and just want to have a bit more insurance that your little grey cells will fire the way you would like them to as you age into your 50s, 60s, 70s, 80s, and 90s, - then READ THIS BOOK.

I believe everyone should read this book, because it could possibly mean the difference between living a life of misery, or living a life without it.

First of all, let's get one thing straight.  This is not a cure all book for every disease under the sun, nor does this doctor even come close to suggesting this.  In fact, this is not a book that will help everyone, whether or not you have an illness, brain-related or otherwise.  After all, ONE SIZE DOES NOT FIT ALL.  Many people actually do quite well with moderate amounts of organic unprocessed whole grains.

However, this is a beyond hopeful book, that challenges the notion that brain disorders are our genetic destiny and that there is nothing we can do to prevent or ameliorate them.

Why should we even listen to this guy?

We should listen because we deserve to be optimally healthy.

We should listen because Dr. Perlmutter is a rarity of rarities:  he is a board certified neurologist plus a fellow of the American College of Nutrition.  Neurology (high-minded science-based medicine) and Integrative/Holistic medicine, typically do not mix;  worse than oil and water in fact. However, this MD has shredded that stereotype and ripped the box of conventional thinking wide open and has made a much bigger box.  If physicians truly want to help all of their patients (not just those that respond positively to pharma and surgery), they will, at the very least, educate themselves with the material Dr. Perlmutter has written in his book: the scientific data that supports his position, the anecdotes of the successes he writes about, and a general plan for patients to follow with the support of their physician.

Why wait until 20 - 30 years from now for randomized blinded clinic control trials (that may never happen) to affirm what this doctor is saying is true?  The damage for many will be irreparable by then.  There is enough science at the present time to push the red warning light and motivate us to change, NOW.

For example, how scary is the following information?  Babies born to gluten-sensitive women have an increased chance of developing schizophrenia and other psychiatric disorders.  He goes on and on and on about the potential dangers of sugar, gluten, grain and a high-carb/low-fat diet.

What are some of the highlights of this book?  The same things I've been saying and prescribing to patients for the past 20 years.  (Vindication feels mighty fine):

  •  many people are suffering with gluten sensitivity without having celiac disease, and should avoid these foods for the betterment of their health
  • lots of good healthy fats will make you healthier and slimmer;  high-glycemic  carbohydrates and sugar are what make you fat
  • a sugar-free, grain-free diet for Type II diabetics is the best way to go
  •  physical exercise and mental exercise help your brain cells grow
  • cholesterol is a great molecule, don't diss it:  it's the golden goose for vitamin D, bile acids, neurotransmission, sex steroids, etc.
  • inflammation and oxidation are the culprits for many diseases, don't blame cholesterol
  • if you're going to take a cholesterol-lowering drug, you should know all of the facts, especially if you have never had a cardiovascular problem before
  • gluten, sugar and other pro-inflammatory foods, along with environmental toxins, can create the perfect storm that could lead to serious diseases
  • eating high cholesterol foods does not impact your blood cholesterol levels
  • the brain functions well on adequate levels of cholesterol and your brain loves fat
  • a high sugar and high carbohydrate diet oxidizes LDL, and that's what's bad about cholesterol, not the all-important LDL that transports vital cholesterol into your brain
  • lowering cholesterol will not prevent a heart attack
  • short-term water fasting is good for your brain and waistline
  • DHA is a stellar supplement as is coconut oil
  • having regular proper sleep each night is crucial for your brain and body to repair themselves

In his book, Dr. Perlmutter explains all of the above and so much more, with scientific studies that support these common sense statements.

Like this MD, and many of my colleagues, I too have witnessed dramatic, positive changes in many people with different types of health challenges, with the removal of gluten and sugar from the diet and the addition of large amounts of healthy fats.  However, Dr. Perlmutter also recommends a large volume of eggs to be eaten, but is careful to point out that any food can be an intolerance that can cause inflammation.

Case in point:  Three members of my family would love to put eggs back into our diets because of the health virtues ascribed to eggs as mentioned in the book.  However, we all tested very high positive for IgG4 levels to egg yolk and egg white and each time we would put this wonderful food back into our diets, we would collectively experience a wide range of varying symptoms including brain fog, fatigue, smelly sulphur farts, abdominal bloating and abdominal cramping:  definitely signs of low grade inflammation.

From what I have observed, the food that most frequently displays elevated IgG levels in patients' food sensitivity tests, is egg;  even more frequent than gluten, gliadin, and milk components.  However, I would guess that only about 20% of those who have elevated IgG levels to eggs complain about symptoms associated with eating them.  A large percentage do not notice any adverse symptoms when eating eggs but still test positive.  I have my theories about this, but it would only be speculation and not based on anything solid.

This is quite unlike the case for gluten and dairy though.  Of those that test positive for gluten and dairy, I would guess that at least 95% notice mild to dramatic adverse affects to their health with the consumption of these products.  About 5% say they observe no changes.

Dr. Perlmutter recommends having the comprehensive gluten sensitivity test done called Cyrex Array 3, and for other food intolerances like dairy, eggs, soy and other gluten grains, the Cyrex Array 4 test.  Tests from Cyrex Labs are not yet available in Canada, however, IgG4 and IgE testing of foods can be done by Meridian Valley Labs in Washington or Rocky Mountain Analytical (RMA) in Alberta.  I use the former, however the latter also gives an option for testing the IgA levels of foods.  RMA also states that, "it is important to know that, with the exception of gliadin (found in wheat gluten), the elimination of IgA reactive foods has not been proven to provide relief for any specific health conditions".  I see that Array 3 and 4 use IgG and IgA antibodies.

Personally, I only test for IgE and IgG4 levels to gluten and gliadin, but not for IgA.  Perhaps I will now start doing IgA levels in those people who believe gluten/gliadin is problematic but tests have previously shown negative for IgE and IgG4 to this substance.

Over the last year, our family has essentially gone grain-free.  We believe it is the next health echelon up from being gluten-free, sugar-free, dairy-free, alcohol-free, junk-free and egg-free;  which we have now been for almost 2 decades.

The reason we went grain-free was not because of Dr. Perlmutter's book.  (It had not yet been released).  Actually, my husband was having some digestive difficulty that was finally and accurately diagnosed as SIBO (small intestinal bacterial overgrowth).  This condition explained why he could not tolerate probiotics and why he had dramatic improvements in his health after an antimicrobial treatment coupled with a grain-free diet.  His sleep-related laryngospam completely disappeared along with other health issues.

In cooking a grain-free meal for my hubby, I wasn't going to cook a separate meal for him and a separate meal for myself. No way.  So I started going grain-free as well, not just gluten-free.  I also noticed further benefits with my own health.  Though I will say, twice per week we eat gluten-free grains in the form of home-made bread when we go up in the mountains on our 4 - 7 hour hiking treks.  There is no way that either of us could expend that kind of energy without a higher carb load intake during those days.  We don't consume grains for snowboarding or for 1 hour of basketball play, but for an extreme energy expenditure like endurance hiking, I don't see any other solution.  Nut and seed breads are far too heavy on both of our digestions, and I don't believe they would provide the instant glucose needed for our muscles to power up a mountain.  I could be wrong however.  Next summer I'll try powering up a mountain on only fat and protein and I'll tell you how it goes.  (I'll definitely have an emergency stash of dried fruit on hand just in case :) ).

IMNSHO (in my not so humble opinion), after Group Mountain Hiking, nutrition is the second best medicine!

So I've told you two reasons why I'm excited about this material:  1) many naturopathic doctors have seen similar positive dramatic health changes with the removal of sugar and gluten/grains from the diet with a concurrent increase in healthy dietary fat, and  2)  our family's personal success with this type of diet speaks for itself.

The last reason why I am excited about this material, relates to the fact that my mother died from a horrible neurodegenerative disease called ALS.  When I first got this book (like I did with his Better Brain Book), I immediately went to the index to look up all of the information he provided about ALS.  Within the book, there wasn't anything that I didn't already know:

  • there are situations where ALS has been wrongly diagnosed and the problem is really gluten sensitivity (how lucky for those folks!)
  • the disease is devastating and there is no meaningful treatment
  • a ketogenic (high fat) diet might be helpful
  • misfolded proteins might be part of the problem
  • a deficiency in glutathione-S-tranferase (an enzyme made from one of the most powerful detoxification molecules in the body) exists in many disease states including ALS
  • people with ALS who also have high cholesterol do better
  • oxidative stress is involved, as may be the glycation of proteins, lipids, DNA and RNA, and when the diagnosis is made, sadly the damage is done

That's about it.

The reason I am excited though, is the remote and potential possibility that ALS may be preventable.  It may not be.  But what if it was?

What if this disease is a disease that occurs because of a perfect storm, as I have hypothesized in my mom's case previously:  in her case, a neuro-vascular injury, long-term pesticide inhalation, long-term MSG ingestion, long-term gluten dietary habits, long-term low-fat dietary habits, low levels of estrogen and progesterone (? low cholesterol), and who knows what else?

I'm going to be really bold here and say that I believe ALS will eventually be cured or at least substantially ameliorated in my lifetime, but it will take 3 things:  1)  a drug to stop proteins from misfolding, 2)  stem cells to regenerate lost function, and 3)  integrative nutrient therapies to maintain that which will be achieved with drug and stem cell therapies, by addressing ongoing oxidation, glycation, and inflammation.

In ten years, I'll come back and read this blog to see how silly my above comments were, or how bang on I was.

This next part is for my children and my future grandchildren:

Big H and Little B:  listen up.  While your grandmother most likely did not have the type of ALS that is passed down to successive generations, you have a family history of various neurological illnesses, as well as a family history of sugar/grain related problems:  ALS, depression, stroke, brain aneurysm, diabetes type II and obesity.

I recommend that you both follow the website, DrPerlmutter.com, and read his book "Grain Brain", because I love you both, and I want the best for your health.  Prevention is much, much easier than trying to repair the irreparable.

If you read only one health book in your entire lifetime, let this be the one.

_________________________________________________________________________

Edited to add (Dec. 11/13):

Even though I have accounts in both, I don't care much for social mass media like Twitter and Facebook.  However, Pete thought this was cool and Hilary thought it was nice.  Me too!

Screen shot 2013-12-11 at 8.02.43 AM

Group Mountain Hiking is the Best Medicine

IMG_4928 We have all heard the following:

Laughter is the best medicine.  Happiness is the best medicine.  Knowledge is the best medicine.  Prevention is the best medicine. Nutrition is the best medicine.  Medicine is the best medicine.

I will now make the case for the best of the best:

Group Mountain Hiking is by far and away the best medicine on earth.

Yup.  This is a bold statement, I know.

Obviously, the type of medicine one uses, largely depends upon the condition that one is taking the medicine for, which ultimately determines its quality for achieving premier status as the "best medicine".  However, if I could pick just one therapy that would help the greatest number of people regarding preventive health and achieving optimal wellness, it would be group mountain hiking.

Let's first start off with science-based perspectives.

A 2012 study done in Austria, showed that group mountain hiking was associated with an improvement in hopelessness, depression, and suicidal ideation in patients suffering from high-level suicide risk.

If intense mental illness as seen in high-risk suicidal patients can be improved with group hiking, imagine what it can do for people who are feeling a bit blue or a bit stressed?

In a 2013 study, again done in Austria, suicidal patients who were hiking 2-3 hikes per week, 2 - 2.5 hours per hike for 9 weeks in a row, showed significant improvement in maximal exercise capacity and aerobic capability.  However, inflammatory biomarkers like cytokines were unchanged during this hiking experiment.  Cytokines are elevated in many disease states including suicidality, but at least these biomarkers did not worsen.

A third Austrian study in 2003, showed that people with metabolic syndrome (central obesity) who hiked for 3 weeks at a moderate altitude of 1700 m, not only showed the expected reduction in body fat and body mass, they also showed a stimulation of erythropoietin (EPO).  How about that?  A natural and legal way to blood dope in order to get more oxygen to all of the tissues.

And this last study, again in Austria, showed those with metabolic syndrome had physically adapted to moderate altitude (1500 - 2500 m) by displaying an increase in EPO as well as a shift in the oxy-hemoglobin curve to the right.  This means that there was improved oxygen transport to the tissues in these people.

Ya gotta love the mountains in Austria.

There is an undeniable association between exercise and great health.  There are oodles of scientific studies showing everything from being able to grow new brain cells with exercise, to being able to reduce the risk for developing some types of cancers.  And of course, the beneficial effects of exercise on cardiovascular health are well documented, as are the improvements in musculoskeletal flexibility, balance, and overall strength.

There is something called grounding, which is the contact of the human body with the surface of the earth.  A study called, "Earthing (Grounding) the Human Body Reduces Blood Viscosity - a Major Factor in Cardiovascular Disease'', shows that contact with the earth's surface can prevent the blood from becoming thick, as seen in atherogenic disease.  Less viscous blood means better oxygenation to all of the tissues in the body.

During mountain hiking, there is constant contact with the earth:  hiking poles digging into the earth with each footstep on the ground;  hands touching rocks in order to balance over scree;  and hands grabbing for branches and trees when necessary.  Mountain hiking is the most supreme form of grounding.  Oxygenation, oxygenation, oxygenation.

Even though I could find no affirmative studies showing the beneficial effect of negatively charged ions in fresh air on health, there must be something in mountain air to give one the experience that John Denver describes as a Rocky Mountain High.  It must be more than just natural blood doping in the brain created by an increase in EPO, that gives one a natural high.  It must be more than just the increase in feel-good chemicals like endorphins and enkephalins typically seen with exercise in general, that gives one a natural high.  There must be something special in mountain air . . .

IMG_5548Of course there are risks associated with mountain hiking:  bears, cougars, dehydration, exhaustion, hypothermia and injury.  For the most part, all of these can easily be mitigated with preparedness and awareness.

From an anecdotal point of view, this is what I can tell you regarding my own experience and what I have heard others say:

Group mountain hiking is the greatest reliever of stress that exists.

The socialization aspect of this activity helps improve mental health.  Hiking with people who love the same activity, stimulates connection, laughter and communication.  Socialization while walking, lightens the load and keeps us light on our feet. IMG_5539

Group mountain hiking also provides for long periods of quiet meditative silence, where each step, step, step, personally takes me deeper into myself and deeper into my surroundings.

Each step, step, step, is a walking meditation that releases every morsel of held-on tension in my body, directly into the earth.  Each step, step, step, releases every stress-filled thought entwined in my brain cells, directly into the air and trees that kiss my skin.  And when the last bit of stress trickles out into my sweat, it is the mountains that surround me that can bare any further load I give up to it.

DSC04236Thank you Mother Nature for embracing our woes and tensions.

After one of our usual 4 - 7 hour hikes that typically consists of elevation climbs between 500 - 1300 meters, I remember one hiker telling me that the stress release he experiences keeps him going for about 4 days, after which point he starts to come down from his high.

During times that I am not experiencing any challenging stresses in my life, I'm pretty much on cloud nine the whole trip.  At other times, if I have been extremely stressed during the week, it takes about 1 -2 hours of step-step-stepping, going up-up-upward into the mountains, where Mother Nature cleanses my soul.  After that, I can relax into my usual mountain high experience.

IMG_5492Finally, for me personally, group mountain hiking is the most wonderful family experience that I partake in.

Group mountain hiking is indeed the best medicine!

Thank you Mother Nature for your exquisite display of beauty.

I rest my case:

[youtube=http://www.youtube.com/watch?v=8wohIH9DWI4&feature=youtu.be]

Useless Drugs

UnknownThis is not a blog about the pitfalls of Big Pharma. I'm not a conspiracy theorist that believes the pharmaceutical industry is only a money making machine that does not care about the health and lives of the people it is manufacturing drugs for. And I am not a person who tries to avoid pharmaceutical drugs at all costs. There is a time and place for pharma drugs; in situations that could mean the difference between life and death; in situations that could mean the difference between suffering and a good quality of life.

Those types of drugs are not the subject of this post.

The useless drugs I am referring to, are those that continue to be prescribed by physicians for no good reason.

The following is an example of one of these useless drugs.

In a non-emergency condition, when a physician tells you that you will ________ unless you take a certain drug, ask your physician to show you the evidence of his/her statement. Fill in the blank. You will: die, or lose your kidneys, or have a heart attack, or have a stroke, etc., etc.

The stimulus for this blog came about from an interaction I had last week with a primary care physician. His patient with early stage dementia (possibly vascular in origin), was taking a cholesterol lowering medicine called Ezetrol. The patient was intolerant to statins, - drugs that are seen to be the gold standard for hyperlipidemia, - and thus he prescribed the useless fibrate drug, Ezetrol.

I was aware of the non-efficacious data regarding fibrates, so I encouraged the patient to discontinue the drug because I was very concerned about lowering cholesterol in a person with a neurodegenerative (maybe neurovascular) disease.

I was concerned, because I follow the work of neurologist Dr. Perlmutter, who wrote Grain Brain.  His views on cholesterol and neurodegeneration make common sense. Cholesterol is linked to improved memory, concentration and learning. The brain consists of 25% fat, and cholesterol is crucial for the manufacture of cell membranes and neurosteroids, which are essential for synapse formation, maturation, and nerve transmission. In short, cholesterol is crucial for proper brain wiring. Cholesterol helps ensure that the lights are on and somebody is home.

Having had a mother who succumbed to a neurodegenerative disease, and knowing that treatment and cure for most neuro-degenerative diseases are minimal to non-existent at present, I take brain nutrition and brain fat very seriously. Cholesterol lowering drugs in these patients make absolutely no sense. I am aware of the potential studies regarding Alzheimer's disease and statins, and if these drugs prove to be efficacious, they will not be as a result of their lipid-lowering effect, but because of their ability to alter blood viscosity and improve oxygenation in the brain. That is my predicted opinion.

Back to the story.

This physician told the patient, that if the Ezetrol was discontinued, a fatal stroke could follow.

I called up the physician to discuss the matter, and in an authoritative and arrogant tone, he said this to me:  “Ezetrol in a statin-intolerant patient with hyperlipidemia who has had previous strokes is proper standard of care”. He added, that it would be “medically negligent to discontinue the drug” because it was “preventing this patient from having a fatal stroke”.

Either this physician was not up to date on the available data, or there was new information in the world of cholesterol lowering drugs that I was not aware of.

I sought out information from the evidence based drug therapy site called Therapeutics Initiative (TI). From the meta-analysis of randomized controlled trials, a paper entitled Serious Adverse Event Analysis:  Lipid-lowering Therapy Revisited states, "analysis of SAEs (serious adverse effects) and mortality does not support the use of statins for primary prevention or the use of fibrates for primary or secondary prevention".

This means that a drug like Ezetrol has zilch benefit, and in fact, people on fibrates have a 1 in 200 chance of dying from a non-CHD (coronary heart disease) cause while on the drug.

I contacted a doctor who was previously involved with TI, and he informed me that using fibrates was not standard of care.

Whether it was “proper standard of care” or not, didn’t matter much to me. After all, I was part of a profession where there are no naturopathic-specific standards of care, and I knew that “proper standards of medical care” do not always address the health needs of all people. One size does not fit all.

However, I was very concerned about his bold statement of medical negligence and his unwavering belief that this patient would indeed be harmed by depriving her of a necessary treatment. I was of a different opinion, and believed the exact opposite:  this drug could potentially be harmful for this person, with zero benefit regarding stroke prevention.

I looked further to see what evidence there actually was, and all I could come up with was a recent study entitled, "Lipid management in the prevention of stroke:  a meta-analysis of fibrates for stroke prevention".  One of the concluding statements in the abstract states,

Our study indicated that fibrate therapy might play an important role in reducing the risk of fatal stroke in patients with previous diabetes, cardiovascular disease or stroke.”

However, when you look at the numbers in Table 3, the above concluding statement is, well, . . . hogwash. In what universe where you have a P value of 0.26, can you make any efficacious concluding statement about secondary prevention and fatal strokes? According to that study, the best you can say, is that you think fibrates change the risk of stroke somewhere between a 77% decrease and a 47% increase, so what you are actually saying, is that there is no difference, and that any difference is due to random chance. Thus the null hypothesis is accepted and this drug is one big DUD.

A paper entitled, “How confidence intervals become confusion intervals”, clearly shows how clinicians must be able to interpret and understand confidence intervals than just rely on (false) conclusions made by the authors of a scientific paper.

Next time your doctor prescribes a pharmaceutical medication for you and you are reticent about taking it, ask your PCP to guide you to the evidence that supports his/her position.

Next time your doctor delivers the threat of illness or death upon you if you do not abide by a certain treatment or procedure, ask him/her to guide you to the evidence that supports this position.

Coincidentally, one would think I had a vendetta against Ezetrol, since I described its uselessness in this blog awhile back, where the drug caused a nephrologist to falsely believe that his patient was in progressive renal failure.

Drugs are useful when used wisely.

Incomplete Medicine - Why I Became a Naturopath

imagesOver the past 2 decades, I have been asked why I had gone into naturopathic medicine, especially after having worked as a critical care nurse in a teaching hospital, and after having taught critical care neurology to registered nurses at a local college. In essence, people were asking me:  why did I venture on to the dark side? – or into the light? – or to whatever? - depending on your own point of view and your own belief systems. Why the switcheroo? Many people over the years have wondered and asked me this.

I didn't see medicine like that back then, that is, black and white;  polar opposites.  And I don't see medicine like that now.  Medicine is medicine;  whatever improves the health of a given individual, both objectively and subjectively, where there is both a short-term and long-term increase in the quantity and quality of life.  That's what medicine is to me.

Conventional medicine is good medicine. Sometimes, it's exquisitely fantastic medicine. Unfortunately, at other times, it is medicine that sucks big time, and causes unnecessary harm. However, all in all, on the average, it's good medicine.

But it is very incomplete medicine.

Why am I even bothering to write this blog (other than for my own posterity)?

Because just the other day, when it was too damn cold and too damn wet to go on a day hike up in the mountains, I decided to surf the internet instead. So instead of engaging in healthy behaviour for 7 hours, I wandered onto the SBM (Science Based Medicine) site and engaged into 7 hours of unhealthy masochistic reading. Well, I did learn a few useful medical information tidbits while reading some of the articles on the site, but for the most part, if you are a naturopathic physician and would like to read all of the reasons why you are a dangerous, useless, redundant, scum of a scam artist, then head over to the SBM site and get your dose of toxic brew – you know, the kind of brew that contains “unnamed”, “bogus”, “illusionary” toxins.

So my story goes . . .

Back in my teens and 20s, I experienced chronic headaches, fatigue, dysmenorrhea, intermittent abdominal pain, mood swings, depression and severe PMS. I was on the birth control pill for 7 years, which helped my dysmenorrhea, but aggravated most of my other symptoms. By my mid-20s, I developed frequent episodes of a pinpoint macular rash on my soft palate that was always followed by an acute bronchial infection. These frequent episodes of acute bronchitis laid me out flat for 3 weeks, 4 – 5 times per year. This had been going on for 2 years, and for each acute bronchial infection, my GP prescribed an antibiotic. My headaches became worse, my fatigue became worse, my moods became worse, my infectious episodes persisted, and then I thought, THIS SUCKS.

At that time, I was working in a fantastic hospital in Ontario, with all of the latest and greatest technological medical advancements. I witnessed incredible life-saving treatments while being an integral part of a life-saving critical care team, and yet when it came to my own health, I felt like shit most of the time.

How was it, that the medicine I was an integral part of, was so good for so many people (for the most part), yet this same medical way of approaching health, couldn't do a damn thing for me?

It was at that point that I saw a naturopath. I became well. I learned what good health meant. And the rest is history.

This was reason number one for the “switcheroo”.

Around the same time that I started on my road to wellness, while working in the ER, ICU and CCU, I saw the same people coming in over and over again: patients with bleeding eosophageal varices from alcoholism, patients with bleeding ulcers from NSAID abuse, patients with suicide-attempted overdoses, obese patients with recurrent heart attacks, etc., etc., etc., etc.

I wondered to myself, surely, these types of conditions can be prevented or ameliorated, long, long before they reached the critical breaking point that necessitated medical heroic intervention? Surely? These were the types of questions I was asking my colleagues at the time.

“Shit happens”, was the answer that some of my colleagues gave me. I thought about it. For sure, when an idiotic drunk driver wiped out an innocent family and I was in the ER pumping on the chest of one of the family members as a last ditch rescue effort - yeah, for sure. Shit happens.

But some "shit" can be turned around. Can't it? Lots of "shit" is preventable. Isn't it? After all, I was feeling like shit, and I regained my health, so why couldn't others do so as well? I started studying university biochemistry, physics and physiology for my pre-med entrance into naturopathic medical school, and at the same time I started learning about preventive health, far beyond the minuscule amount of information I had learned in nursing school.

That was reason number two for the “switcheroo”.

Around the same time that I started experiencing much better health and wondered about better health for others, I saw an overweight 34 year old woman in ICU, after what was suppose to be a routine gallbladder operation (an open cholecystecomy at that time). The surgeon accidently cut something he wasn't suppose to. (I don't recall now, 30 years later, whether it was the common bile duct, hepatic duct, hepatic artery, or what was accidently cut). All I remember was that an otherwise “healthy”, overweight young woman, walked into the hospital for a routine GB operation expecting to be home recuperating after a week, and instead, ended up septic in the ICU. For months, nurses changed and irrigated her open wound dressings that were continuously exuding pus from the visible intestines below. She eventually died in ICU.

Whoa. Shit really does happen. Yes, sometimes even the best and most skilled surgeons make accidental mistakes. But I asked myself back then, could her death have been prevented by the idea that a cholecystecomy should be used as a very last resort treatment option instead of a first line of attack in an otherwise stable patient with mild symptoms?

That was reason number three for the “switcheroo”.

Colleagues at the hospital I worked at, were mostly supportive of me taking the step toward the world of natural medicine.

The last and final reason for my “switcheroo” delved into the world of woo – the bane of all rigid SBM scientists.

A 36 year old pregnant patient of 30 weeks gestation with her second child, was admitted to ICU with a severe kidney infection. She rapidly deteriorated to the state of being comatose, despite being given multiple intravenous antibiotics to help reverse her disease state. She went into premature labour at 32 weeks gestation in the adult ICU. The Neonatal ICU team came down and delivered a healthy preemie that needed constant monitoring in the NICU which included gastric tube feedings.

Mom and babe were now separated: mom in the ICU on the second floor, and babe in the NICU on the fourth floor.

At this point, the mother was on a ventilator and started having cardiac arrest after cardiac arrest. This went on for the next 4 - 5 days. “Code Blue” was called on this lady at least 7 times, and on some occasions I remember CPR being done on her for 30 - 40 minutes at a time.  Multiple regimes of the same heavy duty intravenous antibiotics continued to be administered despite her progressive deterioration.

This woman was in septic shock, her heart was failing, she was in multi-system organ failure, she was in a vegetative state, the drugs and CPR were barely keeping her on this side of the precipice, and none of us – not doctors, not nurses, - not one of us believed for a moment that this woman would not succumb to her illness or progress to a persistent vegetative state since the antibiotics were having no effect on her septicemia.

It was at this point in time that a nurse from NICU came up with the brilliant idea of bringing the baby and the incubator down to the adult ICU, to touch her dying mother. The nurse placed the baby on to her mother's belly.

I was amazed with what happened next.

This mother, who we all believed to be brain dead - (if I recall correctly, a BSEP done at that time showed no brain activity), - this mother started to have tears running down the sides of her face when the baby was placed on her belly and she slowly started to regain consciousness.

Over the next few days, as the baby was brought down to her everyday from NICU to lie on her belly, she regained her health to the point that after a few weeks, she was wheeled out of the ICU in a wheelchair with her baby in her arms.  Both were now ready to go home from the ICU.

This isn't only a story about the incredible power and efficacy of conventional medicine. This is also a story about something bigger than medicine. It's the story about some incredible force – life force, love, limitless energy – call it whatever you want, but to me it was the story of something much bigger. Spontaneous healing? Placebo response? No.  Even though it was intangible, it was more powerful than these common notions that allude to mere coincidence and wishful thinking.  And it was definitely something that couldn't be measured or quantified by a randomized clinical trial.

After that, I wanted to expand my understanding of health and healing, so I entered naturopathic medical school in 1989.

While experiencing my acute bout of temporary masochism a few days ago, I ran across a few articles written by Dr. Harriet Hall, a retired MD who speaks out against complementary medicine, integrative medicine, naturopathic medicine, acupuncture, etc.

In her article called Answering Our Critics, Part 1 of 2, Dr. Hall lists her answers to 30 criticisms hurled at the rigid SBM folk. I can't say I disagree with any of her answers except for this one:

  1. It worked for me.Maybe, maybe not. You can only know that you improved after the treatment; you can't know for sure that you improved because of the treatment. That could be a post hoc ergo propter hoc logical fallacy. You may not be able to imagine any other possible explanation, but that doesn't mean there isn't one.

Apparently, Dr. Hall has never met my brother Peter Savich and his MOFD (“My Own Freakin' Data”) theory. :)

In her follow-up article called Answering Our Critics, Part 2 of 2, she lists 6 more rebuttals to her critics, writes a blurb about placebos, and states her own belief about acupuncture:

What does “effective” mean? It's important to understand the difference between objective outcomes and patient perceptions. We can conclude from the evidence that acupunture is merely a theatrical placebo. We can conclude that it would be unethical for us to recommend it. But if a patient is already using acupunture and feels it is effective in relieving his symptoms, that falls into the category of comfort measures, where the patient is deriving a degree of comfort from a procedure with no objective effects.”

Apparently Dr. Hall has not read this particular study on acupuncture and depression.

All in all, for the most part, I would agree with her rebuttal points from 31 – 36, but I do take issue with #35:

  1. Conventional medicine doesn't have an effective treatment for my disease.

    CAM (Complentary Alternative Medicine) doesn't either. They may tell you they do, but they will only offer false hope and waste your time and money. Maybe it's time to accept that there is no effective treatment and concentrate on finding ways to cope and improve your quality of life.

     

And this is where I struggle to understand the rigidity of these MDs, including only a very small minority (thankfully) in my own community. They believe they have this foreknowledge for each and every individual person, that because a treatment has not yet been proven through the gold standard blinded RCT (randomized control trial), that the patient must accept that there is nothing available or of value to him/her because a particular treatment has not yet been clinically proven via this gold standard. How then, does one find ways to “cope and improve your quality of life”, as Dr. Hall suggests?  My answer is naturopathic medicine.

Had I believed my medical doctors when I was in my 20s, when they said to me: “there is nothing more that can be done for you”, my health and my life would not be what they are today. Had I listened to my pediatrician when she told me that I would have to “accept the fact” that my child would have lifelong respiratory illnesses and other infections, her health and her life now would not be what they are today.

What I struggle to grasp, is why, when rigid MDs are faced with a patient who continues to suffer, and then becomes well after seeking CAM therapies, believe it to be more important for that particular patient to follow a specific set of evidence-based medicine rules, instead of acknowledging that for this particular patient, there may be helpful answers that reside beyond the rigid science box for whom conventional medicine had no answers. Then what typically follows, is a circular conversation about efficacy regarding spontaneous healing, placebos, empirical observation and MOFD, and the value or lack of value of the latter two, for those who suffer and find no relief with conventional therapy.  However, circular conversations get us nowhere, so I will stop right here.

What is more important? Compassion or rigid science? The SBMers will say that rigid science is the epitome of compassion because newly discovered medical treatments will be of benefit to (hopefully) a majority of people. The CAMers will say that compassion must be all-inclusive right now, not just for those whom conventional medicine has been successful, but for many who have been met with its lack of efficacy.  In my opinion, both points of view are valid and are not mutually exclusive.

I will say though, that one size does not fit all. It never has, and it never will.  That, is what personal trial and error is all about, in the face of limited or no scientific proven data, and in the face of vast volumes of empirical observatory data.

Conventional medicine is good medicine, but it is incomplete medicine. Naturopathic medicine expands the possibilities for many who have not yet found answers to their health challenges.

ALS Treatments Part 3

Beginning last year on the anniversary of her death, I decided to honour my mom in tangible ways. She died from a despicable disease called ALS. Her backstory (through my eyes) can be found here. My thoughts regarding ALS one year ago, can be found here, here and here. She died on March 31st, 1999.

In honouring her, I have included these 5 tangible ways:

  • keeping up to date regarding ALS information
  • contemplating a hypothetical treatment protocol
  • donations
  • learning about inspirational PALS (people with ALS)
  • expressing my gratitude

Keeping Up To Date

Not a great deal has changed regarding ALS treatments in the past year. However, smatterings of new research in ALS genetics has come to light, the most recent one coming from John Hopkins University. The best summaries of ALS studies in 2012 can be found at ALS TDI and MND Research.

Regarding treatments, as I stated last year, I'm keeping my eye on the intravenous treatment NP001 by Neuraltus, the direct embryonic stem cell transplantation by Neuralstem, and the adult autologous intrathecal stem cell implantation by Brain Cell Therapeutics, to see what develops. It's far too early to tell if any of these will be effective science-based ALS therapies.

While I feel sad for those who had high hopes for the drugs Dexpramipexole and Ceftriaxone, their proven scientific inefficacies did not surprise me. There are other drugs in ongoing clinical trials that I predict will also, unfortunately, be duds.

Unbelievably, even 18 years after my mother was first diagnosed, there are ALS (MND) associations like this one in the UK, who write this on their website:

“The only 'proven' treatment for MND is Riluzole.”

This is shameful. Riluzole is a useless drug. There is no treatment for ALS as of yet.  At least those who manage that website had the courtesy of putting the word 'proven' in quotation marks.

This particular MND association also goes on to say:

“We would encourage anyone with MND who is considering embarking on an unproven treatment to discuss all the implications with their neurologist before making a decision”.

To which I would add, “provided your neurologist is kind, compassionate, open-minded and open-hearted”. (In other words, not an asshole).

Unfortunately, this section regarding keeping up to date with new data is pretty short.

Contemplating a Hypothetical Treatment Protocol

(. . . while awaiting an effective and solidly 'proven' scientific treatment protocol to be developed)

Disclaimer: The following information contains my own personal and medical views regarding what I would hypothetically do for myself or a loved one if faced with this life threatening disease. In no way is it a recommendation for anyone with ALS to follow. It is always best to seek the advice of your medical care practitioner when undertaking any type of therapy; and preferably, a medical care practitioner who is not an asshole.

Again, this year, I've contemplated what I would do if I had ALS. Actually, if I did develop this disease, I would have the familial variant of it, so I would make myself easily accessible to scientific researchers who are involved in the genetic studies of this disease. However, it is highly unlikely that I will develop the familial variant of ALS.

Hypothetically, if I were afflicted, I would enrol in a clinical trial (even if I just received a placebo as part of the control group). I would enrol only if the clinical treatment being studied made sense to me. Many of the clinical trials that are now ongoing make no sense to me at all.

A Hypothetical Protocol for myself or my loved one:

  • balanced bioidentical hormone therapy (including estradiol, estriol, progesterone, DHEA and possibly testosterone); determined by a 24 hour urine steroid hormone test
  • DHA 1200 mg (liquid) twice daily (which includes a total of 260 mg of EPA)
  • Magnesium Glycinate 330 mg twice daily (495 mg BID if my bowels could tolerate it)
  • Acetyl-L-Carnitine 1000 mg twice daily
  • Extra Virgin Coconut oil 2 TSBP twice daily
  • Taurine 675 mg twice daily
  • B-complex vitamin twice daily (containing folic acid in the form of 5-MTHF and vitamin B6 as P5P)
  • Echinacea liquid (only from Medi Herb) highly diluted in water
  • a high fat diet, consisting of large amounts of good quality fats: lamb and lamb fat, mutton, goat cheese, goat milk, organic yogurt, organic butter, ghee, coconut milk, coconut milk ice cream, salmon, poultry with skin, unprocessed beef and beef fat (not hamburgers, hotdogs, sausages or deli meat), wild game with fat, unprocessed pork and pork fat (not bacon, ham, deli meat or sausages)
  • a high healthy glucose diet: dates, prunes, dried cranberries, raisins, fresh fruit, pure maple syrup, unprocessed honey, rice syrup, agave syrup
  • a preservative-free/additive-free diet
  • a diet high in leafy green vegetables, cruciferous vegetables and other vegetables with low phytosterol content, and avoiding foods with high levels of beta-sitosterol (pumpkin seeds, nuts, avocados, fava beans, corn oil, canola oil, soy, margarine, mayonnaise and cocoa)
  • intravenous glutathione 1 gm 3 times per week
  • intravenous methylcobalamin 5 mg 3 times per week
  • very light weight training
  • somatics exercises

When I look at the list I wrote out last year regarding what I would hypothetically do for myself, it is quite similar to the one I wrote above with only a few changes.

It's fascinating, reading the various supplement protocols that PALS (people with ALS) have developed for themselves in order to help improve their energy, and hopefully slow down their nervous system degeneration.

There is something called the Deanna Protocol that sounds quite interesting. Whoa. Lots of pills. Would I take AAKG (Arginine Alpha Ketoglutarate) or AKG (Alpha Ketoglutarate)? I don't know. I'd have to research it more. I've never used it in practice, and while I believe it would help improve muscle health, I can't see how it would prevent motor neuron degeneration. However, I do wish those who are trying it, the best of luck and hopeful success.

There are those who are trying L-Arginine with plausible reasoning. I personally do not tolerate this amino acid even at low dosages, so it would not be on my to-do list, but I see how it could potentially help others.

Last year I mentioned rectal ozone insufflation. I probably would delete it from my bucket list at this point.

And this year, I added Echinacea not only because of the scientific research that involves heat shock proteins, but because I have finally found an Echinacea that is efficacious in clinical practice for immune health. When I first started practicing 20 years ago, I used Echinacea quite a bit. Clinically, I was not impressed with this herb at all, so I stopped using it for many years. I have recently started using it again with good clinical efficacy, for the prevention of colds and flus. The company Medi Herb from Australia, is the only company I now use for the manufacturing of Echinacea.

However, the most important therapies I would follow would be hormones and high fat therapies. I've already been doing that to a lesser degree for many years now for general good health maintenance, however, I have been using much lower dosages of DHA and coconut oil.

The benefits of a high fat diet for neurological support is nothing new, but a potential high glucose diet may be. An ALS worm model showed that glucose could be neuroprotective. On the other hand, poor quality glucose like high fructose corn syrup can be detrimental to patients as seen in this blog, written by Eric Valour, a man with ALS.

As well, I would probably experiment with properly diluted intravenous DMSO. When properly diluted, DMSO is extremely safe. It crosses the blood brain barrier (BBB) easily, it is neuroprotective, and it is a potent anti-inflammatory agent. Dr. Stanley Jacob MD has battled the medical establishment for wider spread acceptance of this valuable medicine that has been used in a wide variety of conditions, including spinal cord injury, traumatic brain injury and stroke.  Dissolution of amyloid plaques make it a potential therapy for Alzheimer's disease.

I am very surprised that I could find no anecdotal reports of any PALS having used intravenous DMSO. Even if DMSO didn't amount to much (other than to create a foul sweet smelling body odour that lasts 24 hours after an intravenous treatment), it would be an excellent carrier for potential pharmaceutical drugs in order to assist with transport across the BBB; not to mention, assisting with improved transport of intravenous methylcobalamin, magnesium and niacinamide.

I am also surprised that this molecule has not been studied with regards to ALS research (that I could find), even as a carrier molecule for potential effective pharmaceutical drugs. Hmmmm. I'm not a conspiracy theorist, so I don't believe that the reason would be because DMSO is so inexpensive to produce, thus creating no potential financial gain for interested parties. It must be because of that God-awful smell after treatment. :)

However, I am reminded by 'Nemesis', a brilliant scientist who writes on the ALS TDI forum, that DMSO is a strong anti-oxidant.  I've already written in a previous blog how ALS seems to be a high wire balancing act between the necessity for reactive oxygen species and the damage that they cause.  He also reminded me that DMSO may also compromise the BBB.  Hmmmmm.

It all comes down to trial and error I guess.

Unfortunately, this section regarding new ideas on a hypothetical treatment plan is also pretty short.

This fall, I will be attending a naturopathic medical conference, where neurologist, Dr. Perlmutter will be speaking. I see that he and Glutathione are on ALS Untangled's hit list and are awaiting to be reviewed (and shredded through the meat grinder by science-based medical experts).  I will definitely be asking questions at the conference.

Donations

There are many, many, many organizations and many people intimately connected to ALS that deserve and need our financial support. There are ALS associations, ALS researcher centers, ALS advocacy groups, incredible people with ALS, and the list goes on and on. Here are some that I like:

ALS Society of British Columbia

ALS Society of Canada

ALS TDI

Friends for Eric

Treat ALS Now

Jumping Joan

People Who Blow Me Away

Last year, I mentioned a few people with ALS that just blew me away. The admiration and feelings of inspiration I had when reading about these people were palpable.

ALS is clearly a very tough road. Here are a few more PALS who are simply amazing people:

gabrielleslimfitblack_large-1
gabrielleslimfitblack_large-1

Francis Tsai is a well-known comic book illustrator in his field, and now draws with the use of his eyes and computer technology. He has ALS, and now with only the ability to move his eyes, draws these incredible pieces of artwork. How mind-blowing is that? Check out his artwork and store.

His artwork is quite intricate and complex, however, the design that caught my eye was a 'simple' beautiful butterfly design.  I love this T-shirt that I just purchased. It holds a great deal of significance for me. After mom died, I consistently saw butterflies flying around me for a few months thereafter. It's as if she was symbolically sending me a message that she had metamorphosed into a free state and not to feel sad about her.

Another amazing human being, is a man named Ben Harris, who is a medical physicist and has ALS. Not only has he participated in a previous clinical trial, he has been engaged in courageous self-experimentation in an effort to find a substance that could be helpful for himself and others.

Science-based medical critics who frown upon those engaged in self-experimentation are small minded people. It takes incredible courage to try all of the self-administered intravenous substances Mr. Harris has tried; even more courageous than base jumping.

Journaling My Gratitude

When I think of my mother, I have frequent thoughts of gratitude. This time, I will write these thoughts down instead of having them float around in my head.

My mother was the sweetest and most affectionate mother I could have ever asked for. She was always making efforts to help everyone she could. I am so grateful that I shared a deep and loving relationship with her. I'm so sorry that she had to suffer from this disease called ALS, however, her strength through her disease process was magnanimous.

I continue to pray for a cure for ALS, and that all of those PALS living now will benefit from that potential cure. I am grateful to all those researchers, scientists and doctors who work to that end, even though it must often seem like a hard grunt up the mountain.

I am grateful that my mom was able to climb the mountain at Crater Lake in Smithers with us just before she died.

Rest in peace mom. If there is a God and a heaven, I hope to see you again one day.

The Non-Bogosity of IgG4 Food Intolerance

images-1
images-1

Recently, I received an email which was a generic mass mail-out Christmas card from a former childhood friend whom I have not kept in contact with for about a decade now. She and her husband run a beautiful and successful B&B.

This is what she wrote:

"Though our guests were wonderful, we did face some challenges in the food department. “Trending now” are guests with food “allergies” based on whatever foods the media popularizes as those we should avoid. Since these “allergies” are trends and not real “issues” we find that despite having many opportunities to let us know about their food issues, guests "forget" to let us know until they arrive.  Arggghhh.  This throws a big monkey-wrench into the food planning and results in our having to serve 8 different breakfasts on any given day to satisfy all the food "allergies" around the table.  August was a particular challenge but we made it through.  Our guests of course are grateful for the care and attention we provide and we really do want them to have great experiences, but it can wear one out after awhile."

Her use of quotation marks around the word “allergies”, and her assumption and maligned statement that food challenges for people are only trends and “not real issues”, speak volumes about her lack of knowledge regarding food intolerances (most likely IgG4 Type III hypersensitivity reactions) and how they adversely affect many people.

I have been doing IgE and IgG4 ELISA food allergy testing on many patients for the past 18 years. I have found it to be a very valuable test, and that is why I continue to recommend it to those particular patients whom I believe would benefit most from it.

In March 2012, CBC put out a story and wrote:

(Dr. Elana) Lavine says doctors should tell their patients about the controversies surrounding testing for food sensitivities, including the fact that there is no proven role for using readings of antibodies called IgG in testing for food allergies.”

The blogging world also weighed in, and in his article “IgG Food Intolerance Tests: What does the science say?”, Scott Gavura, a pharmacist from Ontario, wrote this in his concluding statement:

At present, there are no reliable and validated clinical tests for the diagnosis of food intolerance. While intolerances are non-immune by definition, IgG testing is actively promoted for diagnosis, and to guide management. These tests lack both a sound scientific rationale and evidence of effectiveness. The lack of correlation between results and actual symptoms, and the risks resulting from unnecessary food avoidance, escalate the potential for harm from this test. Further, there is no published clinical evidence to support the use of IgG tests to determine the need for vitamins or supplements. In light of the lack of clinical relevance, and the potential for harm resulting from their use, allergy and immunology organizations worldwide advise against the use of IgG testing for food intolerance.”

This is simply not true carte blanche. This is only one view of food intolerance testing, albeit, well written and supported by the studies Mr. Gavura has cited, but is not true for all people.

This is one reason why I write this blog.

ONE SIZE DOES NOT FIT ALL

If I had lived my life, raised my children, and practiced medicine, only based on the confines and restrictive parameters deemed by the religiosity of science-based medicine (which I might add, was proudly part of for 10 years during my early days as a critical care registered nurse), - many people whom I love, have cared for, or whom I have met in clinical practice, would not be experiencing good health today.

Case in point. My youngest daughter, who is now 19 years old, gave me permission to share her case history on this blog.

B.G. was an IUGR baby, 3 lbs. 11 oz., born at 37 weeks gestation by emergency induction because of anhydramnios. For the first 2 1/2 years of her life, she experienced numerous and multiple infections (at least twice per month), one of which required hospitalization for RSV at 3 months of age. These frequent illnesses included otitis media, gastroenteritis, bronchiolitis, bronchitis, pneumonia and numerous types of URIs.

Our pediatrician in Ontario at that time, told me that B.G. would continue to be a very sick child even as she grew older, and she would have life-long respiratory difficulties because of my gestational history.

At that time, I said to myself: “ENOUGH. This is bullshit. There must be other reasons why her immune system keeps on plummeting and why she is so sick all of the time”.

Back then, I had only been practising naturopathic medicine for 2 years, and while the natural remedies I gave her at that time prevented, what could have been numerous hospital admissions instead of just one, they were not addressing the root cause of her chronic susceptibility to infections.

At 2 1/2 years of age, I did an IgE and IgG4 ELISA food allergy test on her. I knew she did not have any IgE food allergies since she did not have any immediate reactions nor any anaphylactic reactions after eating any particular food.

However, her tests came back with numerous IgG4 antibody reactions (delayed hypersensitivity intolerances) to many foods. I immediately removed all of the offending foods from her diet, and she immediately and “miraculously” stopped having recurring infections of any kind. As the years went on, if I relapsed with her diet and gave B.G. her offending foods, she would quickly become ill again. When I removed them again, she regained her health just as quickly.

Her health for the past 16 1/2 years has been excellent. Now, when she eats foods for more than 4 – 5 days in a row that she has an IgG4 reaction to, she notices the appearance of various types of symptoms: eczema on her knuckles, ear aches, upper respiratory infections, and on the rare occasion, a small thyroglossal cyst. When she continues to remove these offending foods from her diet, she experiences no symptoms at all.

Over the past 16 1/2 years, I have repeated this ELISA test on her 3 separate times to see if anything had changed. There were very minor changes noted, and again, we continued to follow and be guided by the results of this testing in order that she continue to experience excellent health.

I can already hear the song and dance of the rigid science-based medical experts:

"Your child just outgrew her severe recurrent childhood illnesses as she matured, and the change in her diet coincidentally started at the same time she dramatically started experiencing excellent health".  Spontaneous healing, they would call it. Yeah, right.

And of course, the other old adage: "You know Kathy, this could easily be a placebo response". Yeah, right; a 16 1/2-year placebo response from the age of 2 1/2.

B.G.'s case is one of my more personal experiences I have had with IgG4 testing and it's validity in clinical practice.  My practice is filled with patient anecdotes like this one, and some, of whom have had very serious illnesses.

Is everyone who gets this type of testing helped with their health? Of course not (naturally, presuming strict compliance!). But many do benefit from the information obtained from this test.

I don't know of one medical test that is helpful for everyone.

Even though mammograms are useful for breast cancer detection, they don't detect the presence of cancer in all women, and conversely, mammograms at times, can also reveal false positive results that sometimes lead to unecessary invasive treatment. And don't even get me started on the sole TSH blood test used in order to determine thyroid dysfunction.  Too many women are prescribed Synthroid, only to continue experiencing debilitating hypothyroid symptoms, but now have a “normal” TSH badge to show for it because they are on a gold standard medication determined by a gold standard blood test.  Jeez. And what about echocardiograms that are clearly valuable for the diagnosis of various heart abnormalities, but have their own well-known documented limitations that can produce dramatically different results depending on the technician and the machine? (and of which I have recently had a scary and personal family experience with).  Again, these are all very useful tests, but they are very imperfect tests.

There is no perfect test. There never will be. Why?

Because ONE SIZE DOES NOT FIT ALL.

People are individuals, with their own unique biochemistries, unique genetics, unique personal backgrounds and experiences, unique environmental exposures, and unique beliefs.

Stating that there are certain therapies or tests that are bogus because they do not fit into the narrow criteria of randomized blinded clinical control trials, is a practice of arrogance at its highest. It is arrogance at its highest, because it does not allow any room for open-minded thinking regarding the possibility that excellent health can be obtained through alternative ways in situations where science-based medicine does not provide effective nor suitable answers for all people.  It is arrogance at its highest, because it consistently chalks up efficacious alternative answers experienced by many people, to spontaneous healing or to placebo response.

Dr. Lauren Russel N.D. and Dr. Leah Alvarado-Paz N.D, in their article “IgG Allergy Testing” published in the Townsend Letter, wrote:

While the mechanism associated with IgG-mediated food allergy may as yet be unknown, the results achieved from serum IgG assessment are very clear and provide a valuable means of designing effective treatments.”

These doctors too, cite many studies that support their position.

As a clinician, I concur with the opinion of these two doctors because it is what I have repeatedly observed in practice for almost 2 decades.

Let me come back full circle to the email sent by my childhood friend.

She has a valid point when she expresses frustration regarding her clientele who do not have the courtesy to inform her well in advance of their food intolerances prior to their arrival at her B&B. I have empathy for her regarding this issue. When I travel, unless I am in a very large city, I just assume hotels and restaurants will not provide me with the meals I require to maintain excellent health. I make arrangements well beforehand to buy my own food at grocery stores while there, or I bring my own food with me when I travel.  I know this particular woman to be someone who puts all of her energy, heart and soul into providing phenomenal hospitality service to all of her customers, so providing 8 different breakfasts at her B&B because clients have not thought ahead of time to inform her about their food intolerances, could be annoying to say the least.

However, and ironically, the last time I saw this woman and her husband, they were both obese and had been so, for the many years I had known them. In her Christmas mail-out, she writes that they are presently both healthy but are experiencing some health challenges, which include acid reflux and osteoarthritis.

And the final irony? Obesity, osteoarthritis and acid reflux are all conditions I have observed in clinical practice, that have improved with the elimination of foods found through IgG4 testing, and are often the very causes that this former childhood friend believes are 'not real issues'.

At the end of the day, the real issue is ignorance and the lack of knowledge regarding what is possible.

Where is the Heart in Medicine?

Recently, I came across a blog written by Eric Valor, a man who has locked-in syndrome because of a disease called ALS.  As I have written in numerous blogs here, here and here, ALS in my opinion, is the most horrific AND underfunded disease on the planet. Oncologist Dr. David Gorski, an anti-alternative medicine, anti-anti-vaccine proponent, anti-woo doctor and author of many posts on a website called Science-Based Medicine, wrote an article criticizing patients who participate in Do-It-Yourself (DIY) trials.  In his article, his criticism of ALS patients like Mr. Valor, who have embarked on their own patient-driven clinical research, is quite evident.

The patients Dr. Gorski is criticizing, are people who have been told they have between 1 - 5 years to live;  patients who have been told there is no cure and that they will unquestionably deteriorate where they will not be able to move or speak;  patients who have been told that if they want to continue living, they will require a ventilator to breathe, a stomach tube for feeding, and 24-hour round-the-clock nursing care;  and the patients Dr. Gorski is criticizing may have also included a patient who was in the process of making a decision to travel to an area of the world where euthanasia is legal because the suffering was too much.

(Interestingly and as an aside, Dr. Gorski is someone I have mentioned in passing, in a blog I wrote here).

Dr. Gorski's article regarding the DIY use of sodium chlorite by ALS patients was well written, rationale, intelligent and well thought out.  One could say though, that he is not an out-of-the-box type of thinker and is pretty much anti anything that involves non-blinded, non-randomized, non-placebo controlled trials.  (My own personal views on Science-Based Medicine can be found here).  There is no problem with rigid thinking.  If it weren't for rigid thinkers like Dr. Gorski, many incredible advancements in modern medicine would not likely have happened, like many of the effective cancer therapies found today.

However, not all incredible modern medical advancements have been discovered under the rigid and restrictive auspices of the gold standard blinded RCT.  And quite ironically, the eventual cure for this despicable disease called ALS, may in the end, have little to do with this gold standard.  Stem cell treatments involving human cells injected into the grey matter of the spinal cord via a very delicate and innovative surgical procedure by Neuralstem Inc. will never see the light of day as a blinded placebo-controlled study.  Neither will autologous mesenchymal stem cell injections into the cerebral spinal fluid by Brainstorm Cell Therapeutics, be guided by this rigid holier-than-thou yard stick.  The thought of using placebo in a clinical trial involving potentially traumatic intricate surgery, or even "less invasive" stem cell injections into the fluid surrounding the spinal cord and brain, is silly at best.  It is cruel and inhumane at its worst.

Mr. Valor wrote a response to Dr. Gorski's article entitled Response-able.  In his article, he clears up the misconceptions and inaccuracies hurled at him regarding a DIY patient run trial using oral sodium chlorite that he himself had initiated.

Dr. Gorski's response to Mr. Valor (who goes by the moniker ENV), was extremely disappointing.  Dr. Gorski did not address the methodology of clinical trial data analysis that the latter explained in detail with links.  He did not address the ALS Functional Rating Scale that is used in patient-driven clinical trials and are the same ones used by neurologists.  And most importantly, he did not even come close to addressing the concept of patient empowerment, especially in a disease that appears to be futile at present because the potential finish line of cure is so distant for the majority of patients.

I sometimes wonder if arrogance is the reason that some specialists believe that only they can impart wise advice to patients, that only they can deliver rationale treatments that use logical reasoning, and that only they can make accurate observations regarding patient progress and deterioration.

Over the years, I have worked with some specialists who have displayed the greatest respect for their patients.  These gems of doctors understand the importance of patient empowerment and the concept of autonomous patient decision-making processes.  I have also (unfortunately) listened to many patients who have been yelled at and abandoned by their specialists when these doctors did not completely agree with their patient's ideas regarding their own decision-making processes.

I started this blog by asking:  where is the heart in medicine?  What I am asking is, when does logical reasoning intellect in medical practice, meet with an open heart of understanding regarding patient choice and patient suffering?

I don't know the answer to that question for anyone but myself.  I believe that each medical practitioner will find his own way to answer that question for himself and for his patients.  In the end, no one except the practitioner himself will know the extent of his own compassion.

I've always had the biased belief, that if you are going to criticize patients with ALS, you had better have a heart of gold underneath.  Maybe Dr. Gorski has a heart of gold and it's hidden under a bushel basket for only the private viewing of his patients and perhaps the display of other non-public acts of kindness.  Who knows?  Only he, and those he has imparted compassion and kindness to, know.

******************************************************************************************************

ETA 8/22/12:  Treat Us Now is an organization that people can donate to, in order to give hope to those with ALS. Please donate.

ALS Treatments Part 2

  • Due to blogger's diarrhea of the keyboard, I thought it best to split this blog into two parts.  A recap of  Part 1 includes:  a confession of my time warp regarding ALS treatments;  the present day voluminous research and clinical trials going on for ALS;  the knowledge that a viable treatment still does not exist, yet there is hope;  and some amazing people with ALS who simply blow my mind.

At the end of Part 1, I wondered what I would do today if I or a member of my family was diagnosed with ALS.  Given the present research available right now, and the knowledge that no dietary regime or nutrient supplementation program has yet been definitively declared to be effective, and no treatment (except for the useless drug Ritulek) has also not been definitively declared effective, I would:

  • Keep up to date with the ALS TDI and the Scoop It -  ALS Lou Gehrig's disease websites
  • Enroll and contribute information about myself to the Patients Like Me: ALS website, and read what has helped and what has not helped others
  • Enroll in a clinical trial only if:  1)  I met the qualifications for it,  2)  I was within reasonable traveling distance to the research center, and 3)  I believed in the treatment being used, even if I received a placebo.  (There are a few substances being used in clinical trials around the world that make sense to me.  There are many others that I believe will end up being duds, along with the many other treatments that have already been laid to rest.  I would not participate in a clinical trial that made no sense to me).
  • Diet.  As with any condition, I would ensure that any food I consumed did not add to the possible inflammatory body burden of my nervous system.  I would have food intolerances and food allergies determined so that these foods were not part of my diet.  I would eat a balanced diet high in MCTs (medium chain triglycerides) that consisted of whole grains (likely gluten-free), lots of fresh fruits and vegetables, wild game, fish, lamb (including the fat), and lots and lots of coconut oil.  Dairy products often prove to be food intolerances or allergies in many people and may need to be avoided.  I would completely avoid all food additives, preservatives and colourings, so too for refined sugar and artificial sweeteners.  At the very least, even if this diet did not improve or slow the progression of my symptoms, my energy would be much better.
  • Supplements.  The ones I would be confident about taking are:  Acetyl-L-Carnitine, Taurine, Magnesium Glycinate or Magnesium Taurate, DHA, and Vitamin B complex.
  • Self-administer regular Methylcobalmin injections
  • Rule out any possible infectious cause of the symptoms in the rare possibility that the ALS diagnosis is inaccurate
  • Correct any hormone deficiencies with appropriate replacement therapy (unless contraindicated)
  • Pro-actively foster an open mind
  • Exercise
  • Keep my eye on the NP001 clinic trials and the off-label WF10 treatments

I haven't listed dosages because any cocktail that I would try would be a crap-shoot.  Self experimentation would always reign supreme when it would come to multiple supplementation regimes, because there are no guiding scientific trials to suggest otherwise and no strong evidence of any case reports to date showing long-term efficacy, that I am aware of.  There is however, a scientific understanding of how various nutrients affect the body and how they affect various pathophysiological states.

Scientists have not yet pinpointed the cause of ALS, and that is why it has been so difficult to come up with a viable treatment plan.  Most clinical trials are based on various hypotheses regarding the cause.  Present hypotheses include:   a genetic defect of superoxide dismutase (SOD1) in the few that have the familial version, glutamate excito-toxicity (impaired transporters), oxidative stress, neurofilament dysfunction, altered calcium homeostasis, impaired neurotrophic factors, mitochondrial dysfunction, impaired cellular energy production, increased motor neuron apoptosis, increased cytokine activity, and microglial (nervous system macrophage) inflammation.

In this disease, there seems to be a weird oxidation dance going on between the necessity for ROS (reactive oxygen species) and the damage that they cause .  There is no question that oxidative damage is part and parcel of ALS.  But is the oxidative damage the cause of the neurodegenerative cascade, or is it an adaptive response?  Oxidative stress is not all "bad", because oxidants are not only vital for life, some activate proteins that protect cells.  On the other hand, anti-oxidants are not all "good" because they have the potential for squelching the body's necessary adaptive response to oxidative damage.  ALS seems to be a high-wire balancing act, where the body is desperately trying to adjust between too much and too little oxidation, and throwing either process off its adaptive response track seems to lead to further neurodegenerative consequences.

The use of high doses of multiple antioxidants in ALS does not make any sense to me.  While I have listed a few supplements that are antioxidants (Taurine, ALCAR), my rationale for their use would not be because of their antioxidant properties, but because they function in other capacities that assist with neurological functioning.

How does one address this weird dance of oxidation, while waiting for the compassionate drug use of NP001 to become available, or waiting for scientists to figure out why zebrafish can regrow their motor neurons and we humans can't?

Doing nothing is one option.  Doing something is another.  In the end, the results may be the same regardless of what is chosen, but then again, maybe not.

There are a few brave souls who have been experimenting with a substance they believe to be similar to NP001.  It is called Oral Sodium Chlorite (OSC) and is typically used as a bleach cleaning agent.  OSC is a strong oxidant, and the theory behind its use is that this substance modulates macrophages (specialized white blood cells) and therefore decreases neuro-inflammation.  The compilation of data regarding this on-line experiment at present is sporadic and anecdotal.  However, in the world of ALS, even the most rigid-minded science-based neurologist would lack a heart, if he or she did not at the very least, keep an open mind regarding anecdotal evidence and treatments that could possibly be helping his patient.

Would I try OSC if I had ALS?  I don't know.  I suppose it would depend on what stage of the disease I was at.  I would however, give other things that have well-known long-term safety track records a try first, before taking a substance in concentrations where there is little known data regarding its safety use.

Personally, I would try the following regime for myself:   a diet high in MCTs (medium chain triglycerides) and DHA (docosahexaenoic acid);  Reduced Glutathione;  the few supplements I have listed above;  and Ozone therapy (taken 4 h away from dietary fats and DHA).

The reason I was so fascinated with the OSC on-line experiment, is because there appeared to be interesting similarities between it and ozone.  Both are oxidants, both are used as disinfectants for pools, both OSC and ozone increase VEGF (vascular endothelial growth factor), both WF10 (which is similar to OSC) and ozone are extremely effective for healing wounds, and the anecdotes of those who were taking OSC were very similar to what my mom experienced while she was receiving ozone treatments.  She had initial improvement in her tongue movement and in her general strength after the first treatment of major autohemotherapy (intravenous reperfused ozone).  I just chalked it up to placebo because I didn't believe neurovascular inflammation could improve that quickly, even if it was a small improvement.  And like some OSCers, she plateaued out (in her case for 1 1/2 years) with no further improvement and minimal deterioration.  When she decided to finally stop because she experienced no further reversal in her symptoms (other than during the initial "honeymoon" period), she deteriorated toward death within 6 months.  Was it the ozone that helped my mom to stabilize?  Who knows?  Is it the OSC that is helping some of those who have improved a little and who have stabilized on it?  Who knows?  It may or may not be the natural individual progression of the disease state.  That is why clinical trials are so important;  to definitively determine whether improvement and plateau are related to the therapy in question, or just to natural disease progression.

The mild oxidative effect of ozone is hypothesized to be neuroprotective by the activation of Nrf2 (a protein that encodes for antioxidant enzymes).  For those that entertain the possibility that ALS may be due to microvascular ischemic hypoxia, ozone is known to improve cerebral ischemia and is known to be beneficial for those who have had strokes.

The most effective route of ozone administration is via major autohemotherapy, where a specific volume of blood is taken from the patient, mixed with ozone gas, and then re-infused back into the patient.  However, major autohemotherapy is a treatment that is quite cumbersome, expensive, and could not be done at home.  As well, ozone cannot be delivered via the inhalation route because it is a potent respiratory toxicant.  The only appropriate route for DIY self-administration is through rectal insufflation, where ozone gas diffuses into the vasculature of the rectum for about 10 minutes, and eventually crosses the blood brain barrier.  The half life of ozone is fairly short at about 40 minutes, so the medicinal effect would only last for just over 3 hours.  An ozone generator with medical oxygen and rectal catheters would be necessary for this type of therapy.  It's a pretty simple procedure, but a unit unfortunately runs around $2000.  It is also my belief that companies that sell these units should loan them out free of charge for compassionate use for people with ALS, should they choose to experiment with this very safe therapy.  Side effects are practically non-existent when self-administered correctly.

Glutathione has a very short half-life of about 10 minutes, so the medication would be cleared out of the body in less than 1 hour.  The oral form of glutathione is useless.  The intravenous form has shown some efficacy in other degenerative neurological conditions.  The nebulized form is helpful for those with lung conditions like COPD.  However, there is a new mode of administration being tried out with Parkinson's patients that is self-administered via nasal inhalation.  In theory, this is exciting because of the proximity of the brain to the nasal cavity and its potential to quickly cross the blood brain barrier in about 10 seconds.

Glutathione is a potent detoxifier of neurotoxins, it improves endothelial dysfunction by improving nitric oxide, and it helps with DNA repair and protein synthesis.  There is much data regarding its safety, and side effects are rare.  There is very little information as to whether or not glutathione could be helpful in ALS, and its use as a potential neuroprotective agent is based only on theory at present.

Intravenous reduced glutathione is cost-prohibitive running approximately $600-900/month for 3 treatments per week.  On the other hand, intranasal reduced glutathione would cost about $40-$55/month.  I have no experience with the use of intranasal glutathione, but I would imagine it to be a very simple procedure using a nasal atomizer.

However, reduced glutathione is a potent antioxidant and reducing agent, so mixture with an oxidant would be unwise.  I would never recommend that someone try glutathione while experimenting with OSC.  The half life of OSC is presumed to be a few days, which would mean that the oxidant would still be in the body just over a week after having stopped it.  I can't imagine anything good coming from the combination of those two therapies.  One of 3 possibilities would occur:  the glutathione would immediately be oxidized and not provide any possible benefit (which would be a waste of money), or the beneficial action of the OSC would be negated, or an adverse reaction could ensue.

On the other hand, ozone has a short half-life as does glutathione.  One could very easily spread those two therapies apart in a given day so that they did not interfere with each other, and both of those therapies are known to be safe.  When I think about it, it seems almost comical what I would do for myself if I had this disease.  A shot of gas up the butt and multiple squirts of liquid up the nose everyday.

If I were in the very, very early stages of ALS, I would probably forgo any oxidant therapy and just do intranasal glutathione 3 - 4 times daily.  (However, because I have easy access, I'd more likely self-administer intravenous glutathione).

There are no clinical trials whatsoever to support my ideas.  There are however, smatterings of plausible science that may support my rationale for these alternative therapies and my opinions regarding them.

Until men and women in white lab coats with their mice, monkeys and zebrafish come up with something sustainable, all anybody can ever do is guess at what could be most helpful.  Even those pharmaceuticals that are now being fast-tracked for compassionate use prior to the completion of Phase III clinical trials, are only best guesses.  The proof in the pudding will be found in the years following the Phase III clinical trials.

Every general CAM (complementary alternative medicine) practice contains patients with other diseases who have received every conventional medical treatment possible, and are then told:  "there is nothing more we can do for you, it's time to get your things in order".  While not every patient given a death sentence by his or her doctor defies that prediction, many, many do.  I've seen complete reversals in diseases like wide spread metastatic renal carcinoma, primary lung cancer, severe PVD, etc., etc.  These patients are not writing books.  They are not on the internet sharing their success stories.  They are living their lives quietly, healthfully and gratefully.

I would wonder if there are any PALS living their lives quietly, healthfully, and gratefully who have also defied the odds?  That's a question that I would be interested in knowing.  If so, is there anything that they would attribute their progression toward good health to?

Here are other questions I also have.  Do neurologists report spontaneous remissions in ALS?  Are those who have gone into remission or who have experienced long-term plateaus, involved in any studies that compare these people to those whose disease has progressed rapidly?  I would think that that kind of data would be invaluable.

And thus, the march goes on.  A march toward a future vision of a world where ALS is easily and successfully treatable;  a vision of a world where there is less heartbreak and much, much more hope.

It starts with more money to fund research, which starts with much, much more awareness about this disease in the first place.

The dream continues.

_____________________________________________________________________________________________________________________________________________________________________

Disclaimer:  The above information contains my own personal and medical views regarding what I would hypothetically do for myself or a family member if faced with this life threatening disease.  In no way is it a recommendation for anyone with ALS to follow.  It is always best to seek the advice of your medical care practitioner when undertaking any type of therapy.

ALS Treatments Part 1

  • Holy potential treatments, Batman!  Regarding the progress of ALS research, I have been living in a 1999 time warp.

Almost 3 months ago, I blogged about my mom having ALS;  her bulbar onset started in 1995, was diagnosed in 1996, and died in 1999.  After I wrote the article, I was curious to see what was new in the world of ALS research and treatment, especially since I had never heard anyone lecture about this disease at any of my medical conferences over the past 2 decades, and I had never seen any patients with ALS in my naturopathic medical career.  (However, I was familiar with the disease prior to my mom's illness while working as a nurse in critical care and also while teaching neurological critical care nursing at a local college).

There still is no cure or viable treatment for this horrible disease.  This by far and away, is the worst disease on the planet.  It is the underdog of underdog diseases.  I have seen the gamut of diseases over the past 36 years, in pediatric, adult and geriatric medicine, and far too many of them are heart-wrenching and insurmountable.  ALS (amyotrophic lateral sclerosis) is the worst.  Now that more and more young people in their teens and twenties are being diagnosed with this disease, ALS is an abomination.

Nonetheless, this is not a blog about gloom and doom.  It is about the wonder that exists regarding this disease, and the potential hope for treatment.

ALS (also called Lou Gehrig's disease), is a neurological degenerative disease of the motor neurons in the spinal cord and brainstem.  Progressive destruction of these motor neurons leads to complete paralysis, inability to breathe without a ventilator, and the only function that is spared is an active mind trapped inside a body that cannot move except for eye movement.  Neurologists dole out a 2-5 year death sentence for the majority of patients, some are granted a 5-10 year stay of execution, and then there are the very few that are slow progressers that live much longer than 10 years.

To give people false hope is cruel.  To give people zero hope is even more cruel.  To give people false promises for a cure where none yet exists, and prey upon their desperation and financial savings is unconscionable cruelty to the extreme.  People with ALS (PALS) often end up depleting their savings in order to provide basic care for themselves.

Way back in 1996 I had very little to go on in trying to find treatment for my mom.  I had no computer, and the internet and all of the information that can now be found on it was in its infancy.  The only things I found were the useless drug Ritulek, and some Italian study that was using mega doses of Vitamin E.  That was it.

Today, there is so much research going on.  Underfunded, yes.  But much more research than there ever has been.  The ALS Therapy Development Institute (ALS TDI) is an organization whose mission is to develop effective therapeutics that slow or stop ALS as soon as possible, for the patients of today.  ALS TDI lists the clinical trials from around the world that are ongoing, as well as those that have been completed.  Wow.  Lots and lots of trials.  Researchers have scientifically experimented with an endless parade of drugs during the last 13 years of my time warp:  Pioglitazone (a diabetic drug), Thalidomide (a drug for morning sickness that caused birth defects in the late 1950's), Tamoxifen (a breast cancer drug), Growth Hormone, CoEnzyme Q10, Lithium (a drug for bipolar depression), Pramipexole (a useless drug for Parkinson's disease and Restless Leg Syndrome), and the list goes on and on and on and on and on.  It's not like hard working research scientists are not giving their all.  They sure are.

Unfortunately, many hopeful drugs have come and gone by the wayside, only to foster the roller coaster ride of hope followed by disappointment for so many PALS and their loyal care givers.

Today, however, there appears to be a bit more hope on the horizon than usual.  NP001 is a drug that appears to be some type of bioavailable chlorite which quiets the neuro-inflammatory aspect of this disease.  It is given intravenously in cycles with follow-up rest periods.  It is now being fast tracked for compassionate use (since Phase III trials are not yet completed), and time is something that the majority of PALS don't have a lot of.  Please sign this petition to facilitate the compassionate use of this potentially effective drug.  However, as with all treatments, time will tell with regards to its use and efficacy.

Other drugs being researched at present include Dexpramipexole (the enantiomer of Pramipexole), Fingolimod (a drug used for multiple sclerosis), and Ceftriaxone (an antibiotic with anti-glutamate, anti-excitotoxic properties).

Stem cell clinical trials are also in progress.  On the ALS TDI web page for clinic trials, half way down the page click on 'Stem Cells' to see the bonafide clinics doing this type of research.  Other sites like ALS Worldwide caution those PALS who would be so inclined to part with tens of thousands of their dollars to clinics that are less than bonafide.  Stem cells are biological cells that can divide and differentiate into specialized cells like neurons so that neuronal regeneration occurs.  Stem cells can come from umbilical cord cells, embryonic cells, fetal cells or bone marrow cells.  Some treatments require the cells to be surgically transplanted directly into the spinal cord and other treatments involve the injection of cells into the spinal canal.  It is far too early to tell if this treatment is going to be a hit.

Even if stem cells end up being a hit, I have to wonder, even if neuro regeneration indeed does occur with extreme success, what happens if the cause of this disease is not addressed?  Does the entire neurodegenerative cascade begin again?

What causes ALS?

No one knows.  There are lots and lots and lots of theories.  There are combinations of theories.  Genetics.  Bugs.  Neurotoxins.  Injuries.  Emotional trauma.  Yada yada yada.  Who knows?  No cause has yet been found to be conclusive for a disease that starts out a bit differently in each person, progresses a bit differently in each person, and responds to various treatments a bit differently in each person.  Certainly, genetics play a role in the 5 - 10% of those PALS that have the familial variant of the disease.

If the root cause of this disease is found to be defective genes in all cases of ALS, both in the sporadic and familial forms, then gene therapy may have some promising answers.  However, I have a feeling that this type of therapy will be found in the very distant future.  Why?  ALS research is underfunded.  Other than for a small percentage of even the familial version of the disease (FALS), the genetic defect is unknown.  Lastly, the logistical nightmare of creating a type of gene therapy where the treatment would not be fraught with severe side effects remains to be seen.  With gene therapy, there may be potential promising treatments in the future, but I'm guessing that it will be a very long and very windy road toward that end.  But there's always hope.

On the other hand, I am a big believer in epigenetics.  That is, factors other than the blueprint we were born with can affect the expression of our DNA sequencing, both negatively (causative factors) and positively (treatments).  There is currently no conclusive epidemiological information that suggests any outside factor as an influence to the development of this disease.  However, it's only natural for those afflicted to scan the depths of their histories in order to grasp at some plausible, acceptable reason for having drawn the short straw.

For my mom, like others with ALS, the cause may be a not-yet-diagnosed defective gene as the sole culprit that started the ALS ball rolling.

Regardless, with my belief in epigenetics intact in one hand, and my non-stop curious mind in the other, I wonder if the following had anything to do with triggering that possible defective gene in my mom:

  • she sustained a severe neck injury 1 1/2 months prior to the onset of her bulbar symptoms
  • she dusted roses for 20 years with an insecticide, wearing no gloves or mask, and likely inhaled the toxin during application
  • she ate salad daily, with a dressing that contained large amounts of MSG as the main ingredient, and she did this for years prior to the onset of her illness
  • she had 20 mercury amalgam fillings in her mouth
  • she was severely estrogen and progesterone deficient for 15 years
  • she was extremely ill from measles in her 30s and may have experienced mild encephalitis (from the description of her symptoms)
  • she took up running 5 km daily, 5 years before the onset of her disease
  • she was physically and emotionally abused as a child
  • she experienced bouts of severe depression during PMSD and menopause

When I look at that list, I see some pretty potent neurotoxins.  I see possible oxidative damage triggers.  And I see a potential initial neuro-vascular assault that may have been the straw that broke the camel's back.  But then again, maybe all she did was draw the short straw and none of the above factors contributed to her illness at all.  Who knows?  Scientists do not know.  And neither do I.  All we can do is guess.

Dr. David Martz is an MD whose ALS condition was dramatically improved by the use of antibiotic therapy used for Lyme's disease as seen in this study and this article.  Some people believe that ALS is linked to chronic Lyme disease, a tick-borne bacterial disease caused by Borrelia burgdorferi.  However, ALS Untangled, a watchdog group that investigates off-label and alternative treatments for PALS so that they don't get scammed, believe differently.  I think the few lucky ones are those who have been misdiagnosed with ALS, and instead, actually have a Borrelia infection that responds favourably to long-term heavy duty antibiotics.  It's a strange coincidence that Steven Hawking, a man who holds the impossible record for longevity with this disease going on 49 years now, had a father who was a Tropical Disease medicine specialist and had worked with an African Borrelia strain capable of causing meningitis.

But there are also other strange coincidences in the world of ALS, like Dr. Rick Olney, a neurological specialist in ALS treatment, who himself developed the disease.

Try as I might, I could only find a few people that were cured of ALS where their symptoms completely reversed.  One was a young woman who attributed her Christian faith to her miraculous healing.  I couldn't find any information on what had become of her since 2007.  Another woman who was older, was cured with multiple energy treatments by a faith healer.  Unfortunately, these experiences are not reproducible, and outside observers are only left with 2 possible theories:  either these are very rare cases of spontaneous remission and these people happened to draw the long straw among all the short ones, or the potential and possibility for healing is potentially there for all people.  I suppose that's what hope is all about.  If cure is possible for one person, then it can be possible for a majority of people, even if different avenues for each person need to be traversed in order to find a viable treatment and an openness to a healing response.  That's what hope is about, whether it's NP001, stem cells or a spiritual experience.

Then there are other kinds of hopeful, jaw-dropping, and awe-inspiring stories.

A young rising rock star named Jason Becker started experiencing symptoms of ALS at 19 years of age in 1989.  Now, no longer able to breathe on his own or move anything except his eyes, Jason continues to create beautiful music.

Another man, Eric Valor, is a brainiac extraordinaire who volunteers his time to help other PALS, he helps raise awareness about ALS, and also helps others to understand the present research that is going on.  He too requires a ventilator to breathe, round the clock care, and communicates with this incredible computer technology called eye gaze.

You have got to see this next video clip.  The ALS Residence Initiative inspires other non-profit nursing homes to build homes for PALS that provide 24 hour skilled and compassionate care in an environment that supports ventilator care, thereby allowing PALS who choose to live with ALS instead of die of it.  Their quotes read:  "Life is Good" and "Until medicine proves otherwise, technology IS the cure."  Scroll down to the middle video that is entitled, 'Skydiving with ALS and MS' and be amazed.  I cried for almost the entire video clip.  I didn't know that those kinds of things were possible!!  Those PALS have more moxie in their baby fingernail than I will ever have in my entire body during my entire lifetime.  Tears of joy overwhelmed me with the thought that surely, anything is possible;  even a cure for this complex disease.

It just goes to show you that one size does not fit all when it comes to the idea of 'quality of life'.

I sometimes wonder how I can contribute to this cause.  Donating to the above links, be it research, an ALS society, or a person with ALS, is one proactive way.

At other times like today (which happens to be the 13th anniversary of my mom's death), with what I know about health and healing today, I contemplate what it is that I would do now if I found myself or a loved one drawing the short straw.

Hmmmmmmmm . . . .

(to be continued)

Polymyalgia Rheumatica - Another Atypical Case

Polymyalgia rheumatica (PMR) is a painful inflammatory and debilitating disease of the muscles and tissues surrounding the large joints.  Some people believe that this inflammation exists inside of the blood vessels (vasculitis) that feed these muscles and tissues.  The cause is unknown, however, a previous infectious process prior to the development of the disease is hypothesized. I saw a 49 year old man with a sudden onset of violent pain and stiffness in his shoulders, hips, hands, elbows and knees.  Previous to this, he was completely healthy and was regularly active in many sports including hiking, backpacking, snowboarding and basketball.

His condition deteriorated to the point that he could no longer get out of bed or out of a bathtub on his own without someone lifting him up.  He could not sleep at night due to the intensity of his pain.  This man was rapidly progressing to the state where he would soon require a wheelchair.

This rapid deterioration occurred over the span of 2 months.  Prior to the onset of his symptoms, he had a wisdom tooth extracted in which he developed an infection and severe pain at the site of the extraction.

In order to diagnose his severe musculoskeletal problem, he saw 2 MDs, had 7 X-rays done, and had a comprehensive laboratory workup completed, including a blood test for C-reactive protein and an ESR.  All tests came back negative, including the ESR and the test for C-reactive protein;  both of which are usually elevated in patients with PMR.

His doctors prescribed anti-inflammatory medications as well as analgesics that did nothing for his symptoms, and he continued to deteriorate rapidly.

I wondered if a diagnosis of PMR might be a possibility for this man, but he didn't fit the typical case of someone with this disease.  Most people with PMR are over 65.  Most are women.  The large majority will have some elevated inflammatory marker such as the sedimentation rate (ESR) or the C-reactive protein.

Nope.  He didn't fit any of the usual parameters.

I gave him a daily dose of Prednisone 20 mg (a steroid) to take for 3 successive days just for diagnostic purposes to see if my idea of PMR was valid.  Within 24 hours, his symptoms were relieved by about 50%, and within 48 hours his symptoms were relieved by about 90%.  He felt very close to being completely pain-free and had almost normal mobility again.  The change was dramatic, and my diagnosis of PMR, despite lack of confirmatory blood tests was indeed accurate.

For 2 months, this man was on a course of steroid therapy whereby the dose was gradually decreased until he was completely weaned off of the medication.  Many people with PMR need to take steroid therapy for a few years in order to continue feeling well.  While steroids are invaluable for the initial diagnosis of PMR and the quick return of  functioning in a person with this disease, steroids also have many difficult and challenging side effects when taken long-term.

While this man experienced enormous relief with the Prednisone, he also started developing unwanted symptoms such as mood changes and blood sugar fluctuations while on the drug.

It is my opinion that those with PMR would benefit tremendously from seeking out the advice and care of a naturopathic physician.  This link is for those who live in Canada.  The link for the US is here.

With naturopathic medicine, we were able to effectively wean this man off of the steroid after 2 months of use.  Because every patient is unique, each person requires an individualized program to manage his or her disease.

However, in general, adrenal function is often a key in the attainment of health in the patient with PMR.  Using anti-oxidant therapies for the vasculitis that is presumed to accompany PMR, is also quite helpful. Removing food allergies, food sensitivities and food intolerances is a must in order to decrease the body burden of inflammation in the PMR patient.

The following is what I prescribed for this man:

1)  strict adherence in avoiding food allergies and food intolerances

2)  Gamma Linolenic Acid (from borage oil) 480 mg twice daily

3)  Magnesium Glycinate 100 mg twice daily

4)  Multi Anti-Oxidant formula 1 capsule twice daily ("Super AO" from NaturPharm)

5)  "Multi-B5" (from Thorne) 1 capsule daily

6)  Vitamin E (in a mixed tocopherol formulation) 400 IU twice daily

7)  Grape Seed Extract 25 mg ("Grapenol" 85% Proanthocyanidins) twice daily

8)  Buffered Vitamin C 4 gm daily ("Scorbatate" from Genestra)

9)  much later, when his condition was stable off of the steroid:  Ashwagandha root along with other herbal medicines (as found in "Stress Calm" from WTS)

This was the regime this patient was on for 4 years, with minor changes I made here and there as was needed.  At present he takes no supplements for PMR, but continues to follow an anti-inflammatory diet.

With other PMR patients, I have sometimes used "Isocort" to help support the cortisol production of the body.  This particular adrenal support therapy was not indicated for this particular patient.

Again, I apologize for sounding like a broken record.  If you have PMR, it is very wise to seek out naturopathic care.

My patient has returned to his previous state of good health and once again participates in all of the sports he loved to do prior to his illness.

I suppose the take home messages from this case are as follows:  Not all cases of a disease "fit" the typical picture.  No matter what health issue you are experiencing, keep persisting until you get a proper diagnosis.  The earliest diagnosis and treatment of any disease is always best, and gives the greatest chance for maximal recovery.

I'm very thankful that this man was diagnosed early on, because he could have been sitting in a wheelchair now instead of doing lay-ups on the basketball court.  I'm thankful because I wish good health for all people.  I'm especially thankful because this man whom I have been writing about, happens to be my husband.

Helicobacter Pyloris: An Atypical Case

Helicobacter pyloris is a bacteria that infects the stomach lining.  This bug is associated with gastric ulcers, and to a much lesser degree, gastric cancer.  Half of the world's population is infected with this bacteria, but a large majority of those infected, display no symptoms. The transmission of this bacteria is thought to be from person to person via the oral-oral route or oral-fecal route.  One theory is that both water and houseflies act as reservoirs.

For those who are symptomatic, complaints of indigestion, stomach pain, nausea, heartburn, bloating and belching are common.

There is insufficient data regarding H. pyloris in the pediatric population.

Diagnosis involves one of 4 methods:  gastric analysis following endoscopy, a blood test (for antibodies to the bacteria), a urea breath test, or a stool test (for the antigen).  The blood test method is only useful for initial diagnosis but not for follow-up testing when assessing efficacy of treatment.  This is because the blood test will likely show circulating antibodies to the bacteria even after the eradication of the bug.

The choice of treatment with the highest proven success rate for this condition is a combination of 2 antibiotics along with a stomach acid lowering drug (usually a PPI or an H2 blocker).

A foster mom brought in her 13 year old boy to see me, diagnosed by her family physician as having chronic asthma.  This child presented with violent, frequent and continuous clearing of his throat, difficulty "catching his breath", generalized intense tingling and itching of his skin, severe insomnia, and marked restlessness throughout the day.

Mom had been giving him Melatonin 3 mg before bed each night to help him sleep, with good results.  However, none of his other symptoms improved with sleeping better.

He had been on an entire assortment of inhalers for asthma, none of which helped this boy's symptoms, and prior to seeing me, the next step for this child was for him to see a respirologist, a specialist in pulmonary diseases.

Listening to this boy "hork" violently every 5 - 10 seconds throughout his entire appointment with me was distressing.  And if I felt like that, I couldn't imagine what kind of distress this poor kid was going through.  I had never before heard anything like it in my life.

I asked the mother, "Does this ever stop?"

"No", she replied.  "Only when I give him the Melatonin and he's sleeping.  And sometimes he does this in his sleep".

"How long has this been going on for?" I asked.

"Ever since we got him, which was about 6 years ago.  I don' know what he was like before that with his biological mother".

Six years (that we know of, maybe more) of horking like that.  I couldn't imagine it.

When I examined him, his lungs were clear with good air entry throughout.  His peak flow reading was normal.  His respirations were normal, but he did appear to try and get a deeper breath, in between the violent throat clearings.

Then I examined his throat.  Never in all my life have I ever seen anything like it.  His pharynx was fiery red, swollen, and the entire surface was covered with numerous tear-drop shaped blisters, each about 0.5 cm in length.  I wasn't sure if what I saw was a result of pharyngeal trauma from the constant violent 6-year plus history of clearing his throat, or if there was another irritant that was compounding this boy's problem.

"I don't think his symptoms have anything to do with his bronchi or lungs.  You might be wasting your time seeing a pulmonary specialist, but I'm not sure right now.  I believe your child's symptoms are coming from his gut, even though he doesn't have any stomach symptoms."  This is what I said to his mother.

After determining his food intolerances, I recommended a restricted diet for the child which he adhered to with excellent compliance.  He returned in 1 month.  His restlessness greatly improved, his skin tingling and scratching were gone, but his horking was not much better.  The intensity of his throat clearing was a little less violent and the frequency had dropped to every 15 - 20 seconds;  but still far too distressing for this young boy.  On physical examination, is pharynx was unchanged.

It was then that I recommended we do a blood test, with a follow-up breath test for H. pyloris if the blood test ended up being positive.  The results of both tests were positive prior to starting treatment.  Even though there is little data on pediatric infections with H. pyloris, I opted to prescribe the triple antibiotic/PPI therapy to this child for the full 2 weeks instead of 1 week, given the length of time he likely had this bug.

Two months later he returned.  The violent clearing of his throat had completely disappeared.  Not even a mild clearing of his throat was heard.  His pharynx was almost normal, with no erythema, no swelling and only 1 blister left.

He remained as such for 6 months when I last heard from him.  I don't know if mom ever took my advice to seek out a pediatric gastroenterologist for follow-up care.  I hope so.

The best way to treat H. pyloris is with antibiotics.  However, there are those patients who do not respond to this type of therapy and have undergone numerous courses of treatment with no amelioration of symptoms and no eradication of the bacteria.  In those patients, I often use Mastica Gum, Oil of Oregano and Goldenseal which are largely effective in these types of patients, as observed via empirical evidence.  However, there is little scientific data to support botanical medicines in the treatment of H. pylori, except for maybe here.  I have no experience with Monolaurin.

In order to prevent antibiotic-induced illnesses, Probiotics (preferably dairy-free) are crucial to take after undergoing a course of antibiotic treatment for H. pylori.

The bottom line is this:  throat clearing may occasionally be the result of problems other than common conditions like post-nasal drip (chronic sinusitis) or food intolerance/allergy.  It just might be a bug lurking in your tummy.

Dr. Tori Hudson N.D. - Women's Health

I just discovered that Dr. Tori Hudson N.D., a naturopathic physician who is an expert on natural medicine and women's health, has a blog!  In fact, she has been writing since 2006.  (I swear I need to get out more, or at least poke my nose outside of my rural community in beautiful boonie-ville more often). Dr. Hudson wrote a book in the late 90's entitled, "Women's Encyclopedia of Natural Medicine" and it is a book that I have used countless of times over the years for reference in my practice.  It appears as though it has recently been updated in 2007.

I have heard Dr. Hudson give lectures numerous times at various naturopathic medical conventions.  As well, for years now, I have prescribed many of the products she has formulated for a company called Vitanica, and find some of these nutraceuticals invaluable in assisting patients with their health.

I discovered her blog after reading a naturopathic student's blog called, Natural Medicine is the Best Medicine.  I looked at the blogs this student followed, and lo and behold, there was Dr. Hudson.

Dr. Hudson's blog is chuck full of the latest scientific studies along with her own clinical experiences regarding the particular topic of the blog she is writing about.  It is an invaluable read for all women who are interested in natural heath, or for those women who have not yet found efficacy with conventional medical treatments for their problems.

I have read books written by many physicians, both MDs and NDs on the topic of women's health.  Dr. Hudson tops the list for me, and now I find her blog.

Dr. Tori Hudson's blog.  Pennies from heaven.

Panacea: The Greek Goddess of Healing

Panacea was a mythological Greek goddess that was known to heal the sick.  She possessed a medicine that was known to cure every illness on earth.

Panacea and her potion was a myth, and yet as a collective society, we still believe in that myth;  that there is some treatment somewhere in the world that will cure everything.

It doesn't exist.

That's not to say that there aren't wonderful treatments to be found in all types of medicines and in all types of cultures around the world that are extremely useful.  There just is no one remedy that will help all people.  Not a one.

One size does not fit all.

From here on in under the blogging category "Medicine" of this website, I hope to offer useful information regarding specific health topics;  not for everyone, but for those who would find this information helpful.

Fanaticism and Ignorance in Medicine

In an earlier post called My View On Medicine, it was brought to my attention in the comments section by duckandgather, that I was promoting a middle road type of thinking in my approach to medicine. That's only correct if I define that middle road to be very, very wide, at which point it would cease being a middle road, but just a wide road that contains room for all possibilities:   the choice for conventional medicine only, the choice for alternative medicine only, the choice for a combination of the two, or the choice for no medicine at all.  I promote all of these choices, provided that they are based on wisdom.  However, my worldview of medicine has little room for the willful ignorance and blatant fanaticism that comes from a tiny handful of healthcare practitioners;  some of whom are licensed professionals, and some, unlicensed healthcare providers.

I will call these practitioners Fringe Fanatics (FF).  FFs can be found both in CAM (complementary alternative medicine) and in SBM (science based medicine).

I'll begin with the SBM FFs.

For me, there is a big difference between extremists and fanatics.  Extremists push the boundaries of the norm and intensify their focus in pursuit of the good for all people.  Fanatics use irrational zeal, not for the good of all, but to further their own particular agendas.

When anti-CAM MDs say that there are not enough double-blinded RCT studies done in complementary medicine to show efficacy, I'd agree with them.  In this way, these MDs are helpful extremists and motivate those practitioners of CAM into further research for the good of all people.

These same MDs cry quackery for therapies that are now becoming part of mainstream medicine, like acupuncture, homeopathy, naturopathy, detoxification therapies, therapeutic touch, etc.  Via thorough case reporting, alternative therapies have shown good clinical efficacy in healing, and I can only come up with 2 reasons why anti-CAM MDs fail to address all of those people to whom conventional medicine has not been helpful for, and instead, have been helped by alternatives.  Fanaticism and ignorance.

If I were to guesstimate, I'd say that 50% of my practice consists of patients who repeatedly sought out conventional medical help for their problems, tried numerous pharmaceutical drugs with no improvement, then in exasperation came to my office.  I would also guess that 40% of my practice consists of people who want a combination of the best that both types of medicines can offer;  both conventional medicine and alternative medicine.  About 9.9% consists of people who have no health complaints and are basically interested in preventive health.  And only 0.1% want natural treatments to the exclusion of all else.

For 50% of patients that I myself, personally see, conventional medicine had offered them little help.  I saw a 36 year old woman who was previously vibrant and active with no health issues.  She developed severe musculoskeletal and abdominal pain, where intercourse was impossible due to excruciating pain.  All of her numerous blood tests, all of her radiological reports, and all of her specialist examinations revealed that "nothing was wrong" with this woman.  An assortment of pharmaceuticals were prescribe to her by her family physician with no relief in her pain.  After assessing her needs, I prescribed a detoxification program as well as nutrient therapy for her. This woman no longer has pain and now enjoys her life again.

This is not an unusual anecdote for those who are unable to find answers in conventional medical wisdom.  This type of anecdote is actually quite common place in the practices of naturopathic physicians.

What is unusual, are the FFs who chalk up every positive clinical case report to placebo or to spontaneous recovery.  I have no doubt that data on case report statistics regarding healing with CAM, would counter this opinion.  But really, I don't care.  Placebo or not.  Spontaneous healing or not.  I do care that people find the best quality of life that they can experience, which includes longevity and no harm, regardless the type of therapy or medicine they use.  That's my bottom line.  It's simply amazing how many hundreds of thousands of dramatic, long-term, positive health recoveries from a myriad of illnesses are seen in the offices of naturopathic physicians and alternative practicing medical doctors because of CAM therapies.  I guess there's a whole hell of a lot of placebo and spontaneous recoveries going 'round.  Please pass the Kool-aid. :)

FFs also exist in the world of alternative and complementary medicine.

Whenever I hear of a case where a person has opted to have only natural medicine treatments, and there is excellent data regarding their prognosis if they chose conventional medicine, I cringe.  Natural cancer treatments are a hotbed for this type of situation.  I cringe when I hear of an alternative practitioner (usually unlicensed), saying to a patient who has refused proven conventional therapy and embarked on only alternative medicine:  "The lumps are getting bigger and the pus is coming out of the cancer because you're getting rid of toxins.  That's a good sign".

Sheesh.  Sure it is.  It's a good sign that death is just around the next corner.

For aggressive cancers that have metastasized, almost impossible to treat, and lack scientific data for effective treatment -  it's a crap shoot.  That territory is unchartered, and the patient's intuition in that situation is almighty.

When it is the patient who displays fanaticism and ignorance toward a particular type of medicine be it conventional or alternative, I have compassion for their plight, even though I may strongly disagree with his or her choices.  However, I have little compassion for health practitioners who dole out doses of fanaticism and ignorance to those they purport to care about.

One size does not fit all when it comes to medicine.  Some sizes may fit many people and not others.  Special sizes may fit those who do not fit into the standard sizes.  Some people are still waiting for any size that will fit them.  For the fanatics and the ignoramuses, they didn't even know we were trying on sizes.

Cholesterol and Statins

This article isn't necessarily about cholesterol and statins. I'm just using them as an example to make my point.  The thrust of this article is thus:  when we read about science based medicine (SBM) and follow the advice of our science based medical doctors, looking closely at the evidence for ourselves will help us make better decisions. About 10 years ago, I saw a woman who had high cholesterol levels controlled with a statin drug, and had no previous history of coronary artery disease.  She developed severe myalgia (muscle pain) due to the drug, so she took herself off of the medication and I supported her decision to do so.  Her family physician called me up and asked me if I was aware how important it was for patients with hyperlipidemia to stay on the statin medications he prescribed for them, since these drugs doubled the chance for preventing cardiac mortality and non-fatal MIs in these patients.  I told him that I was aware of the benefits that these drugs produced, but that I didn't realize their preventive capacity was that high.  I told him that I would work with his patient using botanicals and nutrition to lower her cholesterol since she could not tolerate this drug.

I bought into this bogus line of thinking regarding the efficacy of statins -  hook, line and sinker.  Wow, I thought.  Double the protection for heart attack prevention?  Could the number #1 killer disease in North America really be prevented by statins in 50% of the population?  Holy smokes.  You couldn't get better odds than that at a race track.  On the other hand, I knew that nutrition, exercise, botanical medicines and nutrient therapies could also help prevent the #1 killer.  Obtusely, I didn't bother to research the studies on statins.

After that conversation with the MD, I became a bit leery about supporting those patients who wished to discontinue their statins, but I assessed each case on a patient-by-patient basis, still leaving many people on their statins, while helping others to discontinue them.   I just took this unfounded information for granted; that is, statins were helpful drugs for people who tolerated them well.

I took a pharmacology prescribing course a few years ago, that now allows naturopathic physicians in British Columbia to prescribe most pharmaceutical drugs, after passing oral and written examinations.  I studied pharmacology in naturopathic medical school over 20 years ago, but only studied the mechanisms of the drugs, their interactions, their side effects and their general use.  Back then, naturopathic physicians were not licensed to prescribe drugs to their patients nor to discontinue drugs.

This particular pharmacology course  I took just blew my mind.  There were many drugs that I studied in that course that were not the golden goose I once thought they were.  Statins were among those drugs that took me by surprise.

Here and here are the conclusions from science based medical data.

In short, statins are completely useless for the primary prevention of cardiovascular disease and cardiac death.  They do . . . . NOTHING.  Nada.  People with no previous history of heart disease who have high serum cholesterol levels, are taking these useless drugs and believe they are actually receiving benefit from them.  Statins do zippo for these types of patients.  NOTHING.  I have visions of George Costanza and Jerry Seinfeld doing a Seinfeld skit about NOTHING and statins for primary prevention.

However, for the secondary prevention of cardiovascular disease and death, there is some efficacy from these drugs as seen in the literature.  Let's see what those figures mean exactly.  If a person has existing ischemic heart disease and chooses to go on a statin, (depending on which study you read), he or she will have a 1 in 23 chance of preventing a stroke or heart attack over 5 years, and a 1 in 56 shot of preventing death from cardiovascular disease over 5 years.  We don't know what happens after 5 years.  It became very clear to me, that statins, while helpful, are no magic bullet or panacea for our #1 killer.  Not even in those with pre-existing disease.  What we have here, are many, many people taking statins, and very, very few people benefiting from them.  However, as cardiovascular risks start to accumulate (i.e. hypertension, diabetes and smoking) in a given patient, the efficacy of secondary prevention with statins also starts to climb.

Statins are no golden goose in the prevention of heart disease.  Moreover, serious adverse effects are often under reported in these trials, let alone the complete lack of reporting of numerous mild side effects.  It is well known now that Baycol, a potent statin, was pulled off of the market because it caused kidney failure from rhabdomyolysis (muscle breakdown) resulting in the deaths of 52 people.

So what do I now do personally, in clinical practice regarding statins?

I educate.  A few years ago, I saw a 56 year old obese woman with hyperlipidemia who was on Lipitor.  She had no history of heart disease herself, but had a strong family history of heart disease and hyperlipidemia.  Her family members were also obese.  I showed her the data regarding the lack of efficacy regarding statins (especially for women) and she didn't care.  She was too afraid to discontinue the drug because she truly believed that she would be extremely susceptible to having an MI without it.  While I disagreed with her rationale, I supported her decision to remain on the med since she tolerated it well.  I then proceeded to prescribed CoEnzyme Q10, Vitamin D and Milk Thistle to support her body.  (Statins decrease levels of the first 2 nutrients, and this particular botanical medicine encourages liver health that can be adversely affected by the drug).

On the other hand, patients that I see with multiple and concurrent cardiovascular risk factors who have pre-existing disease, I encourage to remain on their statin unless they do not tolerate it.

Science based medicine is good medicine, but without looking at the particulars, it becomes medicine that is poorly utilized.