My primary concern for the last 20 years was been the condition known as Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). I deduced some seven+ years ago that the simplest explanation of the multitude of symptoms and abnormalities reported was a stable microbiome dysfunction. This explanation can also be applied to many other conditions. My focus is still on ME/CFS but I wish to make the data and algorithms available to people with any conditions. My old home page is here (dry technical).
The basic model that is supported by studies is:
DNA Snps that results in increased risk
Environmental changes of DNA (epigenetics) that further increase risk
Microbiome function that acts as a catalyst to the risk.
The microbiome is the simplest to alter technically — but very complex to alter because there are thousands of bacteria that interact with each other in the human body. DNA can also encourage some bacteria and discourage others. Example: Typhoid Mary is an excellent example of some one whose DNA and a nasty bacterial infection co-existed nicely.
With ME/CFS, there is always a nasty cost factor for testing. My usual recommendation is for the cheapest, high quality provider that provides information for upload to my analysis site. Some sites provide a mountain more of information — but the benefit from that extra information is almost nothing (and it adds $$$$ and complexity).
uBiome.com is shutting down. This had been my personal usual site because using a variety of techniques, the cost was $25/sample. Don’t order from there.
BiomeSight.com (EU based but serves the world) – discount code “MICRO” has integrated with my analysis site with automatic data transfer. For most people it is likely the best deal.
Thryve (US Based) is what I have used. Their reports may be processed here for independent suggestions. I would also recommend
Joining (free) The Gut Club – They have a discount code for Thryve — save yourself some extra dollars.
Who am I?
I am a citizen-scientist with reasonable scientist credentials: taught Chemistry and Physics at College Level; Master of Science, accepted for the PhD program, certified data scientist with R, one of the top mathematics and physics competition students in Canada during my university years, etc.
I am a closet academic — so I give links to my source of information everywhere and usually keep them to the highest quality sources (PubMed, professional journals). I have even had a letter of mine published in the Lancet.
The Sites
This site — over 1200 blog posts published over the last 5 years. This is where I publish most. You can subscribe to get new posts by email.
Microbiome Prescription site – started in 2018. This is a massive data store with a variety of artificial intelligence algorithms applied to it. Almost 800 people have uploaded their microbiome results to it and many annotated it with their symptoms.
Microbiome Prescription Word Press – started recently. This is intended as a reference to the above site. Just essential pages and a bunch of homemade videos taking you through some features.
Facebook Site: Where I usually post new blog entries and the occasional odd note that is not worth a blog post. Make sure that you like it so you get notices of new posts.
Findings to Date
The assumption that bacteria shifts connect to symptoms appears confirmed using the upload microbiomes.
We have found statistically significant patterns of some bacteria to symptoms, see this post
We appear to have a high probability of correctly predicting symptoms from a microbiome report. See this post.
These findings can be independently confirmed by using the public shared data at: http://lassesen.com/ubiome/
Tools to Help
The Microbiome Prescription site is a theoretical site, that is, it works from the logical application of data and is not based on actual human experience. It does have the ability to create suggestions of things to take and to avoid to try reducing abnormalities in your microbiome. It supports multiple models and algorithms because we do not know which actually works best.
The site states that the suggestions should be reviewed by a medical professional. The source of the information is provided by links (hundreds of articles are cited).
Evolving Story
As more data comes in, and more insight happens, there will be more posts and more features (some labelled experimental — because I am unsure of their accuracy) will be added. This is citizen science.
My ideas on this blog have evolved, as more and more information becomes available. This post is an attempt to bring readers up to date with my current thinking. I am striving to be transparent in my logic — showing the evidence I am working from, and my thought processes.
The data is available in an online collaborative python workbook for analysis. See this post.
Microbiome Definition of CFS/FM/IBS
A coarse condition that results from:
Low or no Lactobacillus, AND/OR
Low or no Bifidobacteria , AND/OR
Low or no E.Coli , AND/OR
A marked increase in number of bacteria genus (as measured by uBiome) to the top range
Most of these genus are hostile to/suppress Lactobacillus, Bifidobacteria, E.Coli
Several are two or more times higher than normally seen
The number of bacteria genus goes very high (using uBiome results), but most of them are low amounts.
(“Death by a thousand microbiome cuts” and not “Death by a single bacteria blow”)
The appearance of rarely seen bacteria genus in uBiome Samples.
A finer definition would be a condition with a significant number of abnormalities in the ‘Autoimmune profiles see this page for the current criteria (i.e. over 25%).
The specific genus and their interactions determine the symptoms seen — likely due to the over- or under-production of metabolites (chemicals). Other autoimmune conditions may share these core shifts. The specific high and low bacteria determine the symptoms if the person was the DNA/SNP associated with the symptoms.
Replace the metabolites produced by the missing bacteria
Replacing the metabolites should result in the reduction of symptoms associated with a deficiency of these metabolites.
See this post for the study references. These items should/could be done continuously.
“Baseline vitamin D level was found to moderate treatment effect on several outcome measures. Dry mouth and sleep disruption were reported more frequently in the placebo group. [Control took Lactobacillus helveticus and Bifidobacterium longum]” [2017]
“heparin- or heparosan-treated animals were different from those of the saline-treated animals, with increased Lactobacillus spp. and decreased Enterococcus sp….heparin or heparosan may be used as an effective gut microbiota modulator by increasing the subpopulation of Lactobacillus.” [2013] – Note:Berg’s anticoagulant therapy for CFS used heparin
“After the intake of apples (2 apples a day for 2 weeks) by eight healthy adult humans, the number of bifidobacteria in feces increased ” [2010]
Unless the bifidobacterium and lactobacillus (B&L) are human sourced, there is almost zero chance of taking up residency. Taking probiotics will not allow B&L to get established. In fact, there are grounds to believe that most commercial probiotics actually reduce your native B&L. You want to encourage your native B&L. See this post for citations.
Bootstrapping E.Coli
The E.Coli probiotics below are human sourced and known to take up residency in the human gut.
The best way at present to proceed is to order an analysis from uBiome. (Disclosure: I have no financial interest in this company.) When your get your results back, log in, click on the “Compare” tab, then go to “Genus,” and click on “ratio” twice, so the results are in descending order.
This is the “hit list” of what you are trying to reduce. DataPunk provides a nice summary of what we know about these. See, for example, Alistipes:
At this point, we run into a logistical challenge. You want to avoid items that are “Enhanced By” (which is in common across all of the high items) and take the items that are “Inhibited By” (which are not on any of the “Enhanced By” lists). You may also wish to reduce foods that are high in items listed in “Nutrients/Substrates.” It becomes a jig-saw puzzle! I have done this exercise for many readers’ uBiome results:
I have discovered that DataPunk is not absolutely current, and have started creating posts based on its data, and then added studies from 2016 and 2017 to the page. Past pages are below, for current list MicrobiomePrescription site.
Some of these items are contraindicated with a few uBiomes that I have reviewed. This likely is why person B reports no results while person A reports improvement. Example: Magnesium is usually very helpful — but there are a few cases where it encourages overgrowth of undesired bacteria.
Probiotics
Most probiotics do not take up residency. They are “here today, gone tomorrow”. Their primary role in my model is producing natural antibiotics against other bacteria. For example:
“Among those, seven Paenibacillus polymyxa strains showed the highest antibotulinal activity and the largest antimicrobial spectrum against C. botulinum strains. ” [2002] – this is in Prescript Assist Probiotics
Probiotics should be rotated: 2 weeks on a specific one, then several weeks off. As a general rule, you want about 6-12 B CFU taken three times a day (or 2-3 times the recommended dosage) — but work up slowly because you may get be a major herx! In general, do not take Lactobacillus with Bifidobacteria or with E.Coli etc. Keep to one family per cycle. You do not want them to kill off one another!
Why 3x per day? Because almost none of them are detected after 12-24 hrs. So to keep them — and the production of natural antibiotics — going, you need to keep taking them during the day. See this post for citations.
The following probiotics commonly seem to help people with CFS/Lyme/Fibro:
Some probiotics, however, may make your symptoms worse! And, unfortunately, most commercial probiotics contains some of these. At the moment Bifidobacterium animalis, Saccharomyces boulardii and Lactobacillus acidophilus are on my best tototally avoid list.
“. The findings show that the six species of Bifidobacterium differed in their ability to relieve constipation. B. longum, B. infantis and B. bifidum were the most effective in relieving constipation, B. adolescentis and B. breve were partially effective and B. animalis was not effective. Furthermore, edible Bifidobacterium treated constipation by increasing the abundance of Lactobacillus and decreasing the abundance of Alistipes, Odoribacter and Clostridium. .” [2017]
Again, rotate and, if practical, change brands too. Their antibiotic compounds are different from different sources.
Herbs and Spices
The best choice needs examination of your microbiome (i.e. uBiome results) and doing the work cited above. Survey results found:
Neem and Oregano with 80% improving
Olive Leaf and Licorice with 56% improving
Thyme with 50% improving
Wormwood and Tulsi with 33% improving
Other things
If you do not know your microbiome, then see https://cfsremission.com/reader-surveys-of-probiotics-herbs-etc/ for suggestions. Your results will vary because your microbiome vary.
Thick blood is an issue also — but here things gets more complicated and not suitable for this recap.
Antibiotics can have a role — but getting prescriptions for the right ones can be a major challenge.
Working with the microbiome and autoimmune is like working with fragments of the dead sea scrolls. For many bacteria we can identify it — what inhibits or encourages it is not known to modern medical science. We have extremely thin slices of knowledge –Almonds enhances Bifidobacterium, Lactobacillus(B&L)as do sesame seeds. What about sunflower seeds? Peanuts? Cashews? We find that Walnuts help the bacteria that inhibits B&L — so we cannot safely generalize to “all seeds/nuts are helpful”.
In many cases, we find that healthy diet or supplements demonstrated to work for normal people have the opposite effect on CFS and other altered microbiome conditions. This is made even worst because most of the studies were done on males and most people with CFS are females. We end up having to swim up-stream thru good and valid suggestions — that are just wrong for us.
My model is simple to understand and allows us to filter many suggestions and candidates. With the availability of uBiome testing (without needing a prescription!) we have entered the age of explicit treatment based on your unique microbiome. We do not know the role of many bacteria involved. We do not know what will inhibit or enhanced all of these bacteria. Frustrating little knowledge!
On the flip side, many readers have reported significant improvement, reduction of prescription medication, etc. so the model and suggestions have potential and thus hope of remission! Microbiome studies are exploding on PubMed, a lot of research is being done and we can often borrow their results.
This is an education post to facilitate discussing this approach with your medical professionals. It is not medical advice for the treatment of any medical condition. Always consult with your medical professional before doing any changes of diet, supplements or activity. Some items cites may interfere with prescription medicines.
I am not a licensed medical professional and there are strict laws where I live about “appearing to practice medicine”. I am safe when it is “academic models” and I keep to the language of science, especially statistics. I am not safe when the explanations have possible overtones of advising a patient instead of presenting data to be evaluated by a medical professional before implementing.
I cannot tell people what they should take or not take. I can inform people items that have better odds of improving their microbiome as a results on numeric calculations. I am a trained experienced statistician with appropriate degrees and professional memberships. All suggestions should be reviewed by your medical professional before starting.
Back Story
Male, 39 years old.
Was on antibiotics for 4 years between ages of 16 and 20 for adolescent acne.
Severe Onset 4 years ago (around June 2018) after a succession of stressful events.
Symptoms include:
Swelling on lymph nodes in throat
Cramping
Ataxia, unsteady gait, brain fog, trouble thinking, speaking, peripheral neuropathy (tingling in left thumb and index finger)
Dizziness
Headaches
Visual impairment / visual processing impairment
Extreme Fatigue / drowsiness
Rash on neck and groin
Facial spasms
Postural hypotension, blacked out many times when standing
Have suffered from sinusitis from around 21 years old (seen small improvement lately after taking polyphenols daily)
Suffered from anxiety and bouts of depression from around age 16
Since 2018 all forms of dairy have exacerbated my symptoms. Previously I didn’t notice any issue with dairy but in hindsight it might have been one of the triggers for my sinusitis. Having removed it from my diet my symptoms are much improved (less fatigue, more energy), although I still suffer from the cognitive impairment this has been improved by circa 25%.
See below for some more information
High Level Overview
Potential Medical Conditions Detected page found some apparent matches:
Metabolic Syndrome
Gastroesophageal reflux disease (Gerd) including Barrett’s esophagus
Mood Disorders
Insomnia
Item like hypertension (High Blood Pressure are define miss — since POTS is typical with ME/CFS.
Dr. Jason Hawrelak Recommendations came up at the 89%ile, most were just outside of his ranges.
Looking at distributions, we see a large number of bacteria with just a token presence (0-9%ile)
Looking at Special Studies, we find good matches for several conditions.
Interpreting the updated table shown below can get a little complicated because we are looking at rarely seen bacteria that occur at low levels usually. This can be impacted by the quality of the reads — a low read count will have less of these detected (i.e. both rare and low counts). Getting over 50% is significant, if the top ones are close to each other, use the top 6 or until there is a gap in the numbers.
I contacted this person and asked about some of the above and got this response:
I have sleep problems. I am a very light sleeper and get up several times in the night
There is a history of bowel cancer in my family.
I have had COVID at least twice, possibly three times in the last 2 years.
my symptoms always flare together. The sinusitis, rashes, POTS, cognitive impairment, aches and pains and fatigue as well as swollen glands. Not sure if that is significant or a regular hallmark.
With alcohol it can cause a flare in my sinusitis.
a SIBO test in December 2020 that the practitioner said was positive
My symptoms saw the biggest improvement after giving up dairy,
Update from person
This results in my doing each of the double matches (i.e. bacteria matching diagnosis) and generating a consensus report. Conerning Long COVID, he wrote “Not sure if I imagined it or a coincidence but my symptoms felt like they improved marginally after it.”
The Consensus Results
I should point out that my preference is shifting to use the a consensus report based on the Special Studies when the results are from or through BiomeSight. The key for the best results are the best identification of the bacteria that has a statistical role (IMHO). It was interesting to note that two different E.Coli probiotics are at the top (which we also get from KEGG Gene data). Choline deficiency means to reduce choline intake.
Top Top To-Take List
Reducing Choline means reducing foods such as those listed below
US National Institute of Health
On the other end (to avoid) are some vitamins that are often suggested for ME/CFS: Vitamin B-12 and Vitamin-B3 (in fact all B-Vitamins are negative!). This is contrary to usual logic because low Vitamin-B levels are common with ME/CFS which causes me to do a rethink. Is the reason that it is low because it is greedily consumed by bacteria causing the problem? If this is the case, then having low Vitamin Bs levels AND avoiding Vitamin Bs make sense.
Probiotics Suggested based on Clinical Studies
KEGG Computed Probiotics
We now take a totally different method of picking probiotics — from the genes in your bacteria and the genes in the probiotics. Above the choice was based on what studies reported that probiotics shifted bacteria in clinical studies. We see E.Coli near the top, the other odd sounding ones are found in Prescript Assist and Equilibrium cited above. In other words, both paths lead to the same probiotics.
Generated from the bacteria in the sample and using KEGG derived data
Bottom Line
What struck me about this analysis is that the picking of bacteria was very simple — just pick the special studies that have high matches and which is reported by the person. The second aspect is that using the data from Kyoto Encyclopedia of Genes and Genomes resulted in a tight agreement on probiotics from two very different ways of selecting probiotics. This gives me a very warm feeling about the suggestions — genomics and studies are in agreement with selecting bacteria using special studies.
Important Note: I did not do suggestions for the two high bacteria cited at the top: Haemophilus parainfluenzae and Prevotella copri. At the moment I speculate they are side-effects and the above will naturally reduce them without needing explicit action. I did run these two bacteria by hand picking with the following being reasonable candidates to reduce them
peppermint (spice, oil)
thyme (thymol, thyme oil)
wormwood(artemisia)
cinnamon (oil. spice)
If you wish to take explicit action, I would take the above only for 2 weeks and then pulse them every 2 months.
I should note that there was universal agreement on the following actions:
low protein diet (agrees with low choline diet above)
bifidobacterium bifidum (probiotics)
xylitol (i.e. xylitol gum is an easy way of getting it)
chrysanthemum morifolium (a.k.a. Ju Hua)
With no disagreement over most of the top recommendations between the consensus report and the “bacteria hit list” suggestions.
User Feedback
“The foods to avoid are all foods that I eat regularly so it’s great to have clarity on the need to avoid these.” -interesting observation, he is in a no-progress scenario, his regular diet may be contributing to no progress!
“Regarding the B vitamins, another symptom I have is lack of facial hair that is certainly not genetic as every male on either side of my family has strong facial hair. I am wondering if that is an outward sign of biotin consumption from bacteria? I have been taking high dose biotin recently. This might also explain the brain fog via bacterial consumption of niacin.” – this seems to agree with my speculation about the existence of some greedy consumers of B-vitamins being part of the problem.
“Am I right to assume that a plant based diet and avoiding the foods listed should starve out the B vitamin consuming bacteria and help increase those that I am low in” This is a reasonable assumption and one that I would make. I would suggest a minimum time doing that of 4-6 weeks.
This is a common symptom for many people. This is reported often in samples, and thus being examined if it reaches our threshold for inclusion as defined in A new specialized selection of suggestions links. It does. We are not being specific about the type of constipation. The numbers are less than desired. If you have SIBO and a sample processed thru biomesight (if you have OmbreLab, see how to do this . 📹Video on Transferring Data from Ombre/Thryve to Biomesight ) and then add SIBO as a symptoms. The online data is recomputed once a month so it will improve identification and suggestions.
The second approach is to look at where bacteria identified as statistically significant agrees with KEGG data on Methane, Hydrogen and Hydrogen Sulfide – what is measured in breath tests.
Small intestine aspirate and fluid culture. This is currently the gold standard test for bacterial overgrowth. To obtain the fluid sample, doctors pass a long, flexible tube (endoscope) down your throat and through your upper digestive tract to your small intestine. A sample of intestinal fluid is withdrawn and then tested in a laboratory for the growth of bacteria.
IMHO, the sample should go thru shotgun processing and not culturing (growth of bacteria)
“Patients with functional dyspepsia also were found to have a greater relative abundance of Streptococcus and decreases in the relative abundance of other genera such as Prevotella, Veillonella, and Actinomyces compared with control subjects, suggesting that their symptoms may be related to alterations of their microbiome at this site…. 16S ribosomal RNA (rRNA) sequencing revealed that SIBO subjects had 4-fold significantly higher relative abundance of Proteobacteria and 1.6-fold significantly lower Firmicutes than non-SIBO subjects. Furthermore, altered Proteobacterial profiles were found that correlated with symptom severity. ”
I will be upfront — my motto is Ostende mihi testimonium – Show me the evidence. I do not dispute getting results from Breath Tests – but reading the latest literature [see 2022], it is likely that most of the breath tests are incorrectly done. This is especially true give the type of advice that I have seen on social media compared to the best literature (see above link). SIBO is associated with so many other conditions that I view it as a shared symptom, such as head ache or constipation. Many clinical studies are done in reference to SIBO in the context of this or that condition. This implies that researchers are seeing very different subsets in what is called SIBO. Just with the three existing breath tests, we see 3! i.e. 6 potential subtypes of SIBO – each with different bacteria involvedand thus different treatment plan being likely.
In preparing this study, I attempted to disprove my gut feeling but looking for what should be there and could not find it. See below.
Study Populations:
Symptom
Reference
Study
Small intestinal bacterial overgrowth (SIBO)
1186
35
Bacteria Detected with z-score > 2.6: found 205 items, highest value was 6.5
Enzymes Detected with z-score > 2.6: found 335 items, highest value was 7.9
Compound Detected with z-score > 2.6: found No items
Interesting Significant Bacteria
All bacteria was found to be low. This may suggests that bacteria that would consume Methane, Hydrogen and Hydrogen Sulfide may be deficient.
Bacteria
Reference Mean
Study
Z-Score
Pectinatus cerevisiiphilus (species)
197
93
6.5
Alkaliphilus (genus)
3463
1239
6.1
Pectinatus (genus)
201
101
6
Alkaliphilus crotonatoxidans (species)
3424
1235
5.9
Eubacteriales Family XIII. Incertae Sedis (family)
441
157
5.7
Streptococcus fryi (species)
128
52
5.6
Thermoanaerobacter (genus)
60
25
5.6
Sedimentibacter (genus)
1397
460
5.5
Tissierellia incertae sedis (norank)
1402
464
5.5
Legionellales (order)
80
41
5.2
Legionellaceae (family)
80
41
5.2
Legionella (genus)
80
41
5.2
Mogibacterium (genus)
440
176
5
Adlercreutzia (genus)
391
170
5
Interesting Enzymes
As with bacteria, all of the enzymes found significant were too low. We have a lot of them!
To me, this is where the exploration could get interesting.
The following are consumers of these three compound according to KEGG and are statistically significant in our study, Those marked with * also produces some of these compounds. Whether a bacteria is producing or consuming may depend on what is in the microbiome environment (i.e. enzyme quantity).
My perspective is that the consumption (and production) of Methane, Hydrogen and Hydrogen Sulfide is dependent on the availability of enzymes and chemicals produced by other bacteria. Those are not measured in testing — only those three easy to test by last millennium lab tests.
Of the items above, two are potentially available as retail probiotics now, or soon:
What I find really irritating is that some of the bacteria inferred to cause SIBO lacks the genetic/genes/enzymes to produce Methane, Hydrogen or Hydrogen Sulfide. My sole comment is last millennium medical belief versus current millennium medical fact.
Bottom Line
SIBO is difficult to treat. I suspect one of the cause is going with a simplistic naïve view of this condition: It is caused by having too many producers of Methane, Hydrogen and Hydrogen Sulfide. In this study, we found the opposite — it is an absence of consumers of Methane, Hydrogen and Hydrogen Sulfide. Furthermore, the existing consumers may be inhibited in this function by the absence of enzymes needed to consume. This data is coming from downstream, so it may not apply apply fully to the small intestine – however the chemicals and enzymes flowing from the small intestine would impact a stool sample.
If the naïve view was correct, the specific bacteria would have been identified decades ago and SIBO would be resolved by a round of antibiotics targeted at them. That is not people’s experience dealing with SIBO.
The bottom citation is long and well worth reading. It covers issues well with SIBO testing.
Coincident with advances in medical science, diagnostic testing evolved from small bowel culture to breath tests and on to next-generation, culture-independent microbial analytics. The advent and ready availability of breath tests generated a dramatic expansion in both the rate of diagnosis of SIBO and the range of associated gastrointestinal and nongastrointestinal clinical scenarios. However, issues with the specificity of these same breath tests have clouded their interpretation and aroused some skepticism regarding the role of SIBO in this expanded clinical repertoire.
Measurement of breath hydrogen (H2) and methane (CH4) excretion after ingestion of test‐carbohydrates is used for different diagnostic purposes. There is a lack of standardization among centers performing these tests and this, together with recent technical developments and evidence from clinical studies, highlight the need for a European guideline.
… SIBO has been associated with multiple conditions including IBS, rosacea, hepatic encephalopathy, obesity, gastroparesis, Parkinson’s disease, fibromyalgia, chronic pancreatitis, end‐stage renal disease, and inflammatory bowel diseases.
H2BT has become the most used test for SIBO in clinical practice; however, this is largely due to its ease of use, non‐invasive character and low cost and not based on evidence from clinical trials.
In short, I do not know what causes the breath test results — there is an abundance of speculation, often held to as fact. There is a absence of solid evidence. What I do know is that bacteria moves up and down in the body – think of the analogy of salmon which moves upstream against strong currents. We see strong statistical shifts in stool samples as a whole, this is evidence that hints that correction may have as a side effect, relief of SIBO.
The recent news of microclots with Long COVID with researchers looking for the same issue with Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) caused me to do this summary of my understanding.
Of double significance for me. During one ME/CFS flare, my SPECT was read as early Alzheimer’s , a condition associated with amyloid β-protein, which agreed with some symptoms.
I’ve just realized that since I started working on my ME and working on my microbiome hypoperfusion symptoms are much worse, but they come and go which I haven’t got a handle on. I often call it brain fog or mild brain fog. But it manifests as memory loss, difficulty retrieving information, I’ve just been out to the supermarket and I forgot a series of things I wanted to purchase for example, which means I’ll have to go out again and by that point it would be my third trip!
It’s impossible to get a SPECT scan with correct analysis in the UK sadly, but I am more convinced now after reading your blog that hypo perfusion for me is getting worse, hence my dementia like symptoms! Memory are often wispy or very faint as well from the last few years.
Anyway are you saying here that you recovered fully by adjusting your microbiome? Or did you do or take anything else to get you there as well.
An email
A Model on Microclots and Microbiome
My first remission from Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) under treatment occur with two “unrelated” treatments being done concurrently. Each treatment had a 80+% success rate reported in conference papers at the time.
Treating Hypercoagulation. My MD worked directly with Hemex labs resulting in Heparin being prescribed. Additionally, I hosted some town halls with David Berg and talked with him at conferences. My specific coagulation issue responded well to piracetam and to a lesser extent, turmeric.
Treating an Occult Infection. This was doing the protocol for occult rickettsia developed by the Pasteur Institute for Tropical Medicine and applied successfully to people with ME/CFS by Dr. Cecile Jadin (a surgeon in South Africa — her father worked at the Institute which is why she knew of the protocol).
“Occult Infection” was likely the persistence of the microbiome associated with the infection (Rickettsia) and not the actual infection.
Later, some ME/CFS specialists connected the dots — the infection (whatever it was) was triggering the coagulation — hence a two prong approach was needed.
Every time that I have had a flare of ME/CFS, I have done both. Typically without any prescription drugs (but if these do not work, it is back to a friendly MD asking for specific things). The items are:
Infections: Triphala, Olive Leaf, Wormwood often with potenators such as bromelain (which allows them to get thru fibrin deposits).
Updated for 2022
It appears that we may have a feedback loop happening.
The coagulation results in low oxygen being delivered to the body. We know that fibromyalgia pain points are associated with hypo perfusion (low oxygen) of the tissue there. Pain is produced by chemical release. It is probable that a host of other chemical signals are sent to the body in an attempt to correct this issue.
The chemical signals moves across the body, especially to the guts. These chemical signals to the wrong microbiome results in bacteria increasing what triggers coagulation and vascular constriction.
The cycle repeats — for some, it quiets down, for some, it becomes uncontrolled feedback (and they keep getting worse) and for others, they are locked into a reasonable stable cycle (the living death).
Treatment Implications
With the above model, we have two goals that needs to be addressed at the same time:
Increasing oxygen flow to the entire body. Typically this means one or more of the following:
Anti-coagulants – best general one is low-dosage heparin. It’s cheap and if taken sublingual, no injections are needed. For my own coagulation mutation, piracetam works as well.
Fibrinolytics: Typically bromelain, nattokinease, serrapetase, lumbrokinese. Fibrin deposits can prevent the passage of oxygen to the tissue.
Vascular dilators: My favorite is flushing niacin. I take 400 mg twice a day as a prophylactic. If I get a flush, I know it is warranted. There are others.
Anti-inflammatory: Having blood vessels inflamed restricts oxygen delivery. There are many choices here, likely good to rotate thru several and note any that causes significant improvement.
Hyperbaric Oxygen Chambers: A short term assist but does not address the cause
None of the above is likely to occur fast. In my case, I did 8 days of the highest dosage of aspirin suggested on the bottle and ended up running up and down the walls. It persuaded my MD to do testing via Hemex labs. Taking aspirin longer is not viable. In general, it is a slow long trek. I do like to do microbiome testing periodically because it gives an objective measure of progress (i.e. more normalization of the microbiome). This has been seen with several post of people with ME/CFS who has started doing suggestions with periodic retests.
Car Analogy
The human body is fare more complex than a car, but the car analogy is a good starting point. The car is running “rough” – some possible causes:
Fibrinolytics – clogged oil or gas filter
Anti-coagulants – fuel stabilizer, many fuels will become jelly like or deteriorate if left a long time
Vascular dilators – fuel or coolant lines, if pinched, the engine may not work well
Anti-inflammatory – fuel or coolant lines have garbage in them or deteriorating or wrong size
Feedback loop: Engine timing is off. Sparkplugs are firing too late or early
Dashboard Dials: Sending the wrong signals (i.e. fuel gauge is not working), high RPM because you forgot to change gears, etc
Quick Lesson on Coagulation
Often there can be a weakness (DNA/SNP mutation) that makes one part less efficient. Typically, this may not cause any issue –but with the wrong sets of chemical signals, it can either overproduce items “upstream” or inhibit one step.
The diagram shows the cascade, all it takes is one weak link or a different link getting stuck on high.
The biggest challenge is treating all of the factors concurrently. Many MDs will opt for a “let us try just one thing at a time”. You cannot isolate the parts and deal with just one — the signaling chemicals will keep flowing across the entire body. This approach rarely works when there are multiple feedback loops occurring. Personally, I use the flushing niacin as a feedback loop damping mechanism. If I have a cold, flu or other issues, I will add in other stuff to try to keep the loop from getting re-established.
We are going to combine those together to look for commonality and if it reaches our threshold for inclusion as defined in A new specialized selection of suggestions links. It does, but the degree of association (z-scores) are lower than with ME/CFS with/without IBS. This is expected because mixing conditions typically results in a more divergent microbiome population thus the scope of treatment increases.
For those with 16s Samples
REMEMBER: When you upload your 16s samples to add symptoms! It is how we get these special studies that appear to get a lot more results than published studies.
Study Populations:
Symptom
Reference
Study
Chronic Fatigue Syndrome (CFS/ME)
1018
159
Bacteria Detected with z-score > 2.6: found 174 items, highest value was 6.6
Enzymes Detected with z-score > 2.6: found 148 items, highest value was 4.5
Compound Detected with z-score > 2.6: found 6 items, highest value was 3.1
The highest z-scores above are lower than other symptoms despite bigger sample size. It was interesting to see that some compounds reached significance (likely due to the much larger sample size)
Interesting Significant Bacteria
All bacteria found significant had too low levels. Many Bifidobacterium species are significant as well as low Prevotella copri which appears on special studies on many co-morbid symptoms. The good news, is that there is work ongoing to produce a prevotella copri probiotic.
We do see a few overgrowth These are seen only in some subsets.
Most enzymes found significant had too low levels. A few were higher, the tip ones were connected to ferredoxin. This implies over reduction of the enzyme NADP+ reductase. I suspect that this may impact hemoglobin (what carries oxygen in the blood), and reduces it’s ability to carry oxygen — thus producing fatigue.
In terms of the model, glutamate is likely to help normalize the gut overtime. I would still hesitate with glutamine.
In terms of probiotics, Bifidobacterium probiotics and likely Clostridium butyricum (miyarisan) are the best candidates based on the shortage of bacteria. Only one Lactobacillus probiotic should be considered: Lactobacillus Bulgaricus, but it is a very weak suggestion.
Remember, the purpose of these studies is to identify items to be investigated (ideally by others). The data for microbiome manipulation is incorporated in the AI Suggestions algorithm on Microbiome Prescription.
If you do not have a 16s sample (which will result in better suggestions), you can use the generic a priori suggestions linked to below.
IBS is a common morbidity for both ME/CFS and Long COVID. This is reported often in samples, and thus being examined if it reaches our threshold for inclusion as defined in A new specialized selection of suggestions links. It does, but the degree of association (z-scores) are lower than prior special studies despite having a larger study population.
Study Populations:
Symptom
Reference
Study
ME/CFS with IBS
1111
53
Bacteria Detected with z-score > 2.6: found 190 items, highest value was 8.4
Enzymes Detected with z-score > 2.6: found 182 items, highest value was 6.3
Compound Detected with z-score > 2.6: found ZERO items
The highest z-scores above are greater than other symptoms despite smaller sample size. This indicates that the causes have more of a signature and thus more homogeneous bacteria shifts then ME/CFS without IBS.
For those that have a sample processed thru BiomeSight software.
Interesting Significant Bacteria
All bacteria found significant had too low levels. Many Bifidobacterium species are significant
The key take away is that Bifidobacterium levels appears to be a significant contributor. Lactobacillus is NOT (and likely is a contributor to oversupply of lactic acid causing brain fog). READ THE LABEL OF YOUR PROBIOTICS — you want Bifidobacterium without Lactobacillus.
The second probiotic to take is any of the E.Coli probiotics: Mutaflor (only available in a few countries) or Symbioflor-2 (available from Paul’s and ships worldwide). NOTE: Lactobacillus is hostile to E.Coli, a second reason to avoid those probiotics.
The top items are below (more on the web page). Remember no microbiome will be an exact match and these lists may contain items to avoid; using your own microbiome data is always the best choice. As always, any changes should be reviewed by your MD before starting.
CFS Remission 