(Ken Lassesen’s focus on the gut enabled him to recover from chronic fatigue syndrome. Over the next couple of months he’ll be exploring his understanding of the role the gut played for him on Health Rising. Check out his website CFSRemission here. Please welcome Ken Lassesen to Health Rising. )
In 2012, while experiencing significant work stress from a new job at Amazon, I got a flu that sent me to the hospital. 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!
A short description of the symptoms (and tests results of each) may help
Onset #1 1972-73
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. 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.
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. 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 Jadin’s protocol.
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 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. 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. 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. Recovery time was just 6 months until I was authorized to return to work.
Was This a Remission?
As described above I’ve actually recovered from chronic fatigue syndrome three times, when most people never recover once. 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.
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 two people just happened to hit on the food that righted their bacterial flora.
The next 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
|Enterococcus spp.||< 1%||24%|
|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?
I believe that a part of my first remission from CFS was going on a high protein, low/no carbohydrate diet for almost two years. This change was not as a treatment for CFS, but I believe that it helped correct my gut flora dysfunction. In animal studies, we find that it does alter gut bacteria as well as human studies. Even Dr. Mercola is in agreement.
I recently read “The Lure of the Stone Age” by Marlene Zuk, an evolutionary biologist, in New Scientist. She is the author of a recent book, Paleofantasy: What Evolution Really Tells Us about Sex, Diet, and How We Live. Sometimes CFS patients will ascribe the cause of their condition to GMO foods, chemical additives, and many other aspects of modern life. In her book Zuk discusses how advances in technology (pre-GMO, pre-chemical revolution) such as breeding techniques developed specialized strains (of plants) or breed (of animals) that may no longer provide the nutrition their predecessors did. The key may not be the nutrition that our human body needs, rather the nutrition that our gut bacteria needs to keep a healthy balance!
For example Holstein cattle were breed to be the world’s best milk producers over the last 1000 years. The goal was volume of milk, not the content of the milk. If the milk had 50% more of certain (potentially unhealthy) fat types than low producing cattle species, no one knew it. The same happens with plants. In recent times, commercial plant species have been breed for characteristics such as shelf-life; again, the impact of slight shifts of composition are unknown. Is it possible some people with ME/CFS simply aren’t suited to some of the dietary changes of modern life (or for that matter the chemicals)?
Take our ability to eat the same fresh fruit and vegetables all year round — instead of just a few months of the year.
Conceptually, the general population believes all of this to be good. But looking at the role of gut flora in health, I find many questions are unanswered. If you have a fresh apple a day, you are supposed to be keeping the doctor away! But some families of bacteria will find themselves very happy from the sugar and malic acid in apples,while others will not be happy; by eating an apple a day you may have actually upset the microbiome apple cart!
Studies have shown that the modern, high fat, high carbohydrate diet is hard on the gut flora. Even after raw food has made its way through the acid bath of the stomach it still retains about 35% of it’s lactobacillus bacteria. What we eat makes a difference but now instead of seasonal variations in gut flora (due to changes of diet), we end up with a single monotonic gut flora for the entire year. If this gut flora goes bad (as I believe is the case for CFS, IBS, Crohn’s and many other autoimmune conditions) then the historical mechanism that constrained this, goes away; ie we’re stuck with the bad flora.
A Change of Flora
So what is the bottom line? If a stable dysfunction of gut bacteria (microbiome) is the root cause of CFS (my working hypothesis), then fixing it is the way to remission. At present, I know of several ways:
- Severe change of diet (likely the slowest)
- The use of the right antibiotics (likely several families on antibiotics needed)
- The use of the right probiotics (Mutaflor and Prescript Assist appears to be the best, any probiotic containing Lactobacillus Acidophilus is NOT the right probiotic IMHO)
- The use of the right herbs (the herbs are natural antibiotics to certain species), the best ones appears to be Neem, Haritaki and Tulsi.
We’ll be getting into more on antibiotics, herbs/spices, diet and probiotics in future blogs. For now, the take away story is that the situation is more complex than one would think.
(The term right is very important for probiotics, for example, CFS patients are low in all E.Coli species. Lactobacillus Acidophilus is usually deemed good, especially when dealing with bad E.Coli — unfortunately it does not know the difference between good and bad E.Coli.. On the other hand, Mutaflor is a probiotic composed of E.Coli Nissle 1917; this is the right probiotic (IMHO).)
(The information on Health Rising is produced by laymen and should not be construed as medical advice. Please consult with your doctor before making any changes to your treatment plan)
Support Health Rising
Like the blog? Make sure you don’t miss the latest on ME/CFS and FM treatment and research news by registering for our free ME/CFS and Fibromyalgia blog here.
Share your pain, make friends, find new treatment options, check out recovery stories and more in the Health Rising ME/CFS, FM and Chronic Pain Forums here