In 2012, while experiencing significant work stress from a new job at Amazon, I got a flu that sent me to the hospital via ambulance. The result was the start of my third onset of ME/CFS. Yes, third.  You may say — “no one recovers, so how can you have recovered three times? You must have something else!” This is false.

My first bout with chronic fatigue syndrome occurred over 40 years ago. Two more followed several decades later. I have fully recovered from all my bouts with ME/CFS.

A short description of the symptoms (and tests results of each) may help

Onset #1 1972-73

My first bout with chronic fatigue syndrome occurred over 40 years ago. Two more followed several decades later. I have fully recovered from all my bouts with ME/CFS.

Doing triple honors at University, working full time and family stress resulted in a sudden collapse of cognitive ability, tiredness and a persistent cough after a mild flu. This was before CFS or Lyme existed as a condition. The family MD (in his 60′s then) happened to have also treated my parents and grandparents and recognized some characteristics of my grandfather “stress cough”. The official diagnosis was “Antibiotic resistant walking pneumonia” which resulted in different antibiotics in high dosages for several months.

I also changed diet to lose weight, a high protein – no carbohydrates diet (which was effectively a gluten free diet before it was invented!).  He advised me that stress is a real contributor and to minimize it. It took almost 4-5 years before cognitive ability returned fully.  IMHO (in hindsight), I was lucky — the treatment was likely ideal although the reasons(model) may have been wrong.

Onset #2 2000-2001

I was working at Microsoft with a 90 minute commute each way and long days. The work situation had become very high stress (the boss causing it was later “asked” to leave Microsoft). Driving home, I fell asleep driving at a stop light and never went back to work. I was being treated by a Family Practice MD and had just done a regular checkout two weeks earlier that had zero problems.  I had cognitive collapse, physical fatigue, body pains, “stress cough”, low blood pressure, low body temperature, gray skin,  etc

I had the full range of conventional medical testing done with nothing apparent being the cause. Both the MD and myself came to the conclusion that it was what was called “Chronic Fatigue Syndrome”. The MD was honest and said that she did not know what to do and literally asked me to research options. I found some very recently published works by Cecile Jadin and David Berg as the two most probable treatments given that both were reporting 70-80% remission.

There was no clue as to how they could relate to the same condition! Without testing for infections, she agreed to put me on the same dosage of a tetracycline that she would prescribe for Acne. I improved and she became more willing to follow Dr. Jadin’s protocol (which was a super-set of the antibiotics used by Prof Garth Nicolson).

I was a bad patient — I did not mention to her until 6 months later that I was badly herxing from the tetracycline (from readings, I knew what it was and knew that she may panic if I reported it to her… at times you need to control information flow to medical professionals.

(A Herxheimer effect or herx refers to a ‘healing crisis’ usually caused by the release of bacterial endotoxins during bacterial die-off.  The symptoms, which resemble those of sepsis, where first characterized in syphilis patients undergoing treatment.)

My blood was sent to Hemex labs for testing and I was indeed hyper-coagulated. Genetic testing  confirmed that I had a genetic factor  common to a population that my father’s family had come from. He had passed away from a stroke.

My treatment consisted of multiple antibiotics rotated monthly (using herx to determine if it was an effective one; a herx suggested it was) plus heparin and a variety of non-prescription anticoagulants. This time my recovery took a year.

Onset #3 2012

Similar situation as Onset #2: High stress company with dysfunctional management (my direct manager left Amazon about the same time I got the flu). Reduced blood pressure and body temperature, cognitive issues and cough were a few of the 40 symptoms I have listed in my notes.  When the symptoms first showed up I continuously increased anti-coagulants (which kept me work-functional) until I started to bruise very easy.

I stopped the anticoagulants because of the very easy bruising and rapidly collapsed over the next week.  MRI results showed no problems (which is typical for CFS), however SPECT result matched those seen from Chronic Lyme and CFS (the radiologist described it as early (under-65) Alzheimer’s Disease).  I was having severe memory issues which many readers are likely familiar with. My conventional MD referred me to NDs, she did not want to/felt incapable of dealing with me.

I went to Dr. Kim Iller, who was familiar with Jadin’s work and willing to follow her protocol. She was working Dr. Marty Ross at that time. I tested positive for Chronic Lyme according to her criteria. As with the 2000 onset, I proceeded to read over 3000 pub med articles to make sure that there was not a better (more effective) treatment available.  I discovered some serious studies on gut bacteria and CFS and with Dr.Iller’s consent, went on to Mutaflor. Mutaflor is the trade name of E.Coli Nissle 1917.  A probiotic, Mutaflor caused the worst herx that I ever had in my life… but also rapid decrease of symptoms. It does not just kick-ass, it kicks-head; the worst headaches that I have ever had in my life…. Mutaflor is non-prescription in Canada and thus was easy to obtain crossing the border.  It is blocked for sale in the US by the FDA despite years of studies finding it effective for Crohn’s Disease.

Recovery time was just 6 months until I was authorized to return to work.

Addendum: The ND who monitored me, prescribed antibiotics (yes, some ND will prescribe) and reviewed all of the herbs etc was Dr. Kim Iller (http://www.functionalmedicinenw.com/ ). She was working with Dr. Marty Ross, MD( http://www.thehealingartspartnership.net/bio_iller.htm), at that time

Was This a Remission?

As described above  I’ve actually recovered from chronic fatigue syndrome three times. Each recovery was shorter as the mechanism behind CFS was better understood and the treatment focused on the cause and not the symptoms.  Besides having a classic symptoms presentation, two objective measurements suggested that, once again,  I did have CFS:

  • My SPECT scan was abnormal in the same way that is commonly reported for CFS and for Chronic Lyme in PubMed articles. Later neuro-psychological testing found that I was in the outstanding range in most areas, but just “normal” for memory.  Memory issues continue to improve but are still present.
  • My vitamin 1,25D values were extremely high — the lab report actually stated that the measurements was done twice to be sure. This extreme 1,25D is seen with autoimmune diseases and with CFS.

With remission, my 1,25D levels dropped down to the normal range — suggesting that it was indeed a remission!

Each time there was a remission, it became faster, and I understood better the probable mechanisms involved.

The second time around, Dr. Jadin’s protocol using prescription antibiotics for over a year worked. This time, apart from some minocycline at the start,  there appeared to be no need for prescription antibiotics and I went into remission at 6-7 months.  The key this time was my focus on the  gastrointestinal system as the source of Chronic Fatigue Syndrome.

Several apparently random observations lead me to focus on the gut

  • Fecal transplants produced an immediate remission from CFS that lasted for at least a few months.
    • I’d corresponded with a patient that experienced this twice in Australia before this onset.
  • Long term antibiotics result in remission for a significant percentage of patients (but don’t work for others)
    • Each antibiotics impacts different gut flora, thus the randomness of results made sense.
  • At the start of this onset, I recognized, after clearing up other symptoms, that many of my core symptoms were gastrointestinal. These symptoms were “below” the radar on other onsets.

Once I was on sick leave I started reading every article on PubMed dealing with CFS, in particular, when remission was reported for some.  Two interesting and seemingly disconnected cases occurred; some people, oddly enough, recovered through the use of 85% chocolate and others from the use of licorice.  Obviously, this is not the way out for most people with ME/CFS but something did happen. My question then became what was in common with these observations???? My academic training is in modelling.

The conclusion was simple: all of these items result in changes of the gastrointestinal bacteria. Given that we all have different bacterial mixes I wondered if it was possible that these people just happened to hit on the food that righted their bacterial flora.

CFS Gut Bacteria Studies

One step was to see if anyone has reported changes in  the gastrointestinal bacteria on a sample of CFS patients.A paper presented in 1998 in Australia and available [here] had. The study deal with only 6 family of bacteria, but the pattern was clear; the bacterial flora in this group of ME/CFS patients was profoundly disturbed.

Gut Flora in ME/CFS from an Australian Study

Family Controls CFS Patients
E.coli 92.3% 49%
Klebsiella/Enterobacter 0% 3%
Enterococcus spp. < 1% 24%
Bacteroides spp 92.8% 91%
Bifidobacterium spp, 7.1% 2%
Lactobacillus spp. < 1% 0%

My conclusion was that if you could change these bacteria back to the ranges seen with controls, CFS may disappear but how to do that?

That is the purpose of this blog, to share my experience and research on how to do this. Antibiotics could do it alone for some; probiotics for others; herbs and spices for still others, and some may need all of them. This is no “stock protocol” for treatment because our gut bacteria is as individualistic as our DNA.