Objective evidence — the smart watch dimension

People who have read my blogs over the last few decades know that I keep to direct evidence; I avoid speculation and “I figure things work this way” thinking. Microbiome tests is a key part of it. My preference is to get as much data as is affordable/reasonable. This is typically my Bacteria Reported/Cost ratio. At the moment, Thorne is the distinctive winner.

Another data source can be smart watches. I have written about this in the past, Monitoring watch for CFS and other Conditions [2021]. After two years, my watch suffered failure on the charging toggle; so time to get a new one — what I got is described below. Every year features increases on smart watches. My first watch took only a few measurements and only on the hour.

Not Prestige Watches

I could go Apple Watch ($400), Fitbit ($300), Samsung ($450) etc. and drop a few hundred dollars for a device that will likely be technologically obsolete in 2 years. Or go with a Chinese model that costs $40 and which will last 2 years or more. In many cases, the key sensors may be the same as used in the prestige models. In some cases, these Chinese watches have features not available on the prestige watches.

Accuracy/Medical Grade is NOT the purpose

I use the watch to detect differences. In general, I find the results are reasonably accurate when I compare to standalone devices.

For most people (especially those with brain fog), their memory is poor and often they do not feel there was any change based on subjective memory. Having daily history going back months allows you to get objective measurements of things that change. Hopefully, it will stop you from ceasing something that is actually helping. Remember, I am very objective evidence based.

Review of my latest watch

You can find them on Temu or Banggoods. My model is E500. Once I got mine, my wife wanted to upgrade to the same model and did.

The screens

How many steps today and hours of sleep with details below

Then Heart Rate, BP and ECG (manually done)

Some Drill Down Details

Sleep Quality is often influenced by the Microbiome

Having daily detail breakdown is sweet!

The heart rate also maps activities (such as steps) providing better understanding!

With a good summary

Blood Pressure is every 5 minutes. With the other data, if there is a spike, you have enough other measurement to evaluate the events and causes.

Oxygen Measurement is far better than a finger device!

And more details

HRV – Heart Rate Variability

With simple summary and ratings

Below is an example from a day that I was pushing myself for physical activity more than usual (some who use the term “out of shape”). Fatigue was definitely happening!

Night Sweats

At present, I do have night sweats — the temperature monitor definitely show it. They start about 3 hours after going to bed and stops when I wake. As is common for people with ME/CFS (including those that are recovered), I have below normal temperatures.

Blood Glucose Levels

This can be very good to determine how well your meals are handled by your body

Bottom Line — Concrete, Detailed Objective Data!

There is a little overhead. I usually do periodic screen captures on my phone and off load the images to my PC so I can compare what was to what is.

24 Years of ME/CFS with Mouth Microbiome

Back Story

My history is:

  • currently 56 years old
  • CFS started at age 32 after a bad cold
  • I’ve had bloating and burping since hospitalized as a child for a lump on my throat. I received antibiotics at this time
  • I went into 80% remission for about 6 years from age 50-56. I don’t know what did it but I was on a low FODMAPS diet and started using hydrogen peroxide as a mouth rinse
  • Symptoms
    • in addition to the bloating and burping I have the following symptoms
    • fatigue
    • sometimes a numb feeling in parts of my hands and feet
    • orthostatic intolerance (although I did the tilt table test and tested negative)
    • halitosis
    • tinnitus
    • a strange feeling in my head
    • shortness of breath

I took inulin before my remission and my symptoms intensified immensely (especially burping and fatigue and shortness of breath)

I had a culture of my upper duodenum done in 2013 and it showed 10000CFU/ml of rothia, prevotella melaninogenica and streptococci viridins. A recent Bristle Health oral biome test showed the prevotella melaninogenica in the 90th percentile

Analysis

I was not surprised about getting ME/CFS after a cold. Cold virus include COVID which can cause Long COVID — a sibling of ME/CFS. The wrong cold virus combined with other catalysts can send someone down that path.

First, I look at the distribution of percentiles. A normal/typical microbiome should have the same count (percentage) in each of the 10%ile. As is often seen with ME/CFS and Long COVID, we have a major overrepresentation of the 0-9%ile — 4x the count of most other groups.

PercentileGenusSpecies
0 – 96289
10 – 191422
20 – 291522
30 – 391616
40 – 491519
50 – 592025
60 – 691014
70 – 791822
80 – 892017
90 – 992135

I interpret this as a host, “a mafia”, of odd bacteria that cross support each other and pumps disrupting metabolites (chemicals) into the body. Thus it is not a bacteria(person) that causes the problems but a big gang of bacteria.

There was not a strong bacteria that predominate this shift, Phocaeicola massiliensis was the only candidate. Looking at Potential Medical Conditions Detected, there were no significant matches (not surprising with an abundance of low percentile bacteria).

Bacteria deemed unhealthy is a pretty long list.

Looking at Dr. Jason Hawrelak Recommendations, we see several that are usually low percentiles that are too too low. These include: BifidobacteriumLactobacillusMethanobrevibacterRoseburia and Faecalibacterium prausnitzii.

TaxonomyRankLowHighYour ValueStatus
Bacteroidiaclass03537.564Not Ideal
Akkermansiagenus133.225Not Ideal
Bacteroidesgenus02029.183Not Ideal
Bifidobacteriumgenus2.550.015Not Ideal
Blautiagenus5106.53Ideal
Desulfovibriogenus00.250.149Ideal
Eubacteriumgenus0150.006Ideal
Lactobacillusgenus0.0110.002Not Ideal
Methanobrevibactergenus0.00010.020Not Ideal
Roseburiagenus5101.154Not Ideal
Ruminococcusgenus0153.9Ideal
Proteobacteriaphylum043.09Ideal
Bilophila wadsworthiaspecies00.250.575Not Ideal
Escherichia colispecies00.010.006Ideal
Faecalibacterium prausnitziispecies10155.159Not Ideal

Looking at some of the conditions we see a marginally better match for Long COVID than for ME/CFS! Not sufficient to ascribe to a cold virus as the onset cause, but interesting.

  • Long COVID   (62 %ile) 16 of 204
  • Chronic Fatigue Syndrome   (60 %ile) 4 of 64

Going over to our special studies, we see Long COVID is the best match

Bristle Health Results

This is the first time that I have seen this report. It is a mouth test from BristleHealth.com (good name, better then ToothBrushHealth!). I have pointed out the importance of the mouth in prior posts: A mouth full – for better or worst [2014] and Your mouth can trigger flares[2017].

It provides information on selected strains by role:

As an exercise to understand the “end-to-end” process (literally), I have created the table below. Since the data is by species we have an issue of different tests reporting different species. For more details see The taxonomy nightmare before Christmas… The * indicate that there was no match at the strain level, so we use the genus as a proxy.

First thing to remember is that bacteria is pH sensitive so the quantity in each location is expected to be very different.

BacteriaBristlePercentile
Actinomyces dentalis1.890*
Actinomyces graevenitzii1.990*
Actinomyces odontolyticus0.490*
Atopobium parvulum6.869*
Atopobium sp869*
Campylobacter concisus5.298*
Campylobacter gracilis5.198*
Candida albicans1.8
Candida dubliniensis1.5
Candida glabrata2.2
Candida sp1.1
Capnocytophaga granulosa7.3
Capnocytophaga sputigena0.19*
Capnocytophaga sp0.18*
Corynebacterium matruchotii8.386*
Dialister micraerophilus0.494*
Eikenella corrodens2.6
Enterobacter cloacae2.5
Fusobacterium nucleatum1.919
Fusobacterium sp0.392
Gemella haemolysans1.848*
Gemella morbillorum0.1248*
Granulicatella adiacens (30%)4.815
Haemophilus haemolyticus4.8
Haemophilus parainfluenzae7.2
Haemophilus pittmaniae0.79
Helicobacter pylori2.361*
Lactobacillus fermentum3.55*
Leptotrichia trevisanii0.99
Megasphera micronuciformis8.524*
Neisseria elongata0.15*
Neisseria flavescens2.1
Neisseria mucosa3
Neisseria subflava1
Oribacterium sp0.09826
Porphyromonas sp2100
Porphyromonas catoniae0.27100*
Prevotella sp1073
Prevotella fusca2.273*
Prevotella histolica9.573*
Prevotella loescheii1.61
Prevotella melaninogenica973*
Prevotella pallens0.173*
Prevotella salivae8.873*
Prevotella tannerae0.5673*
Prevotella veroalis7.573*
Propionibacterium acidifaciens2.1
Rothia aeria0.8
Rothia mucilaginosa5.2
Selenomonas noxia4.472*
Solobacterium moorei0.389
Stomatobaculum longum0.18 
Streptococcus constellatus2.748*
Streptococcus infantis7.948*
Streptococcus intermedius1.90
Streptococcus mitis7.848*
Streptococcus oralis7.21
Streptococcus parasanguinis1.349
Streptococcus peroris1.648*
Streptococcus salivarius548*
Streptococcus sanguinis248*
Streptococcus tigurinus8.748*
Tannerella sp0.88
Treponema sp0.73
Veillonella atypica8.518
Veillonella dispar7.518*
Veillonella sp2.718*

I noticed something interesting with strains that were in both samples.

My subjective conclusion is that this strongly supports the hypothesis that the mouth microbiome feeds the microbiome of the rest of the digestive track. We have 4 rare strains in the above list of 7 where only 1 would be expected to be below 14% (1 in 7).

We can get suggestions for the mouth approximately by using this feature and entering by the genus items above 7 for high, 9 for very high or below 3 for low, below 1 for very low.

All Bacteria [Genus] Reported720 Bacteria

Suggestions include (for mouth) are below. This is an experiment to see how suggestions for the “other end” compares! Values below 0.4 are usually low significance.

There are some subjective issues in entering the contents and getting suggestions. For suggestions, doing parent and/or children of a bacteria can be debated many ways. Some species are low of a genus and others are high… do you mark the genus high, low or normal? It is unclear if the bacteria listed are pure bad or just bad in excess. That is, should anything not zero be deemed too high or only those over 7. Things are not sufficiently cleared from this report. If I get more requests to do analysis of Bristol Health reports, I will invest more time and add a custom manual entry page. I will need to research every single species to know the appropriate handling.Below is for purposes of illustration only

Avoids include: xylan (prebiotic)lactobacillus plantarum (probiotics)berberineCacaod-ribose

Microbiome Suggestions

The adage “No man can server two master” is good to keep in mind in this scenario.

I did the usual “Just Give Me Suggestions” path since there was nothing that stood out that could require special handling. “Just Give Me Suggestions” obtains 4 sets of suggestions using different logic to try to derive the best suggestions. I will start by taking the above list and see how they rank in terms of the microbiome.

📏

As expected, with my two masters preamble, we have disagreements. All of the mouth items came in as weak suggestions against BiomeSight suggestions (range: -460 to 465), so doing them will likely not have significant impact on the other end’s microbiome.

Back to Microbiome Suggestions, we have in decreasing priority (excluding antibiotics):

And on the to avoid

Looking at Diet Styles, only two are strong indicated, both avoids (listed above).

Food Site

The food site takes the nutrients found and assists in building a food menu plan.

👍
The top Nutrients Suggested

For the top one, a nutrient unfamiliar to most people, we see this list to choose from. We See Barley on it. It Barley is a problem, then almond, peanut or pistachio are good alternatives. For Peanuts, I actually did some posts in the ME/CFS context.

mg per 100 gramsFood
533600Pistachio
374500Almond
358000Peanut
243500Fennel
218200Paprika
200000Barley

Similarly, Naringin points to Grapefruit (just about the only choice) with rosmarinus officinalis (rosemary) being a vert diminished next choice.

Thiamin is an easy to find vitamin — Vitamin B1

Hesperetin is in Lime, Blond Orange, Lemon and Grapefruit (AGAIN Grapefruit!)

Questions

Q: On cfsremission and/or cort johnsons blog you discussed the importance of breaking down biofilms with things like nac as well as rotating herbs, probiotics and antibiotics. Is that a layer that should be added onto the items selected by microbiomeprescription (I plan to reread those posts before starting).

A: Yes, I have posted about biofilm in the past: Combating an Infection Defense Mechanism: Biofilms [2014] and Probiotic Biofilm Breakers[2016]. It is not a simple matter “Biofilms provide survival sites for both beneficial and opportunistic pathogenic bacteria, by providing protection as above and increasing the potential of the bacteria to survive and evolve” [2013]. It impacts antibiotic resistance [2020]. In other words, we have yin-yang. If you are intending to aggressively reduce bacteria known to use biofilms, especially with antibiotics, then it is a wise choice. In most cases, I would not do it by default. For example, Akkermansia muciniphila and Lactobacillus rhamnosus GG both form biofilms [2020].

Q: What can you suggest to deal with Halitosis (Bad Breath)

A: The bacteria involved are nicely listed in your report.

We will again use All Bacteria [Genus] Reported but deem all of the above to be high (0-5), very high (5+).

In the resulting list we see many items that can be used as teas (which would likely impact the mouth bacteria): triphalaoregano (origanum vulgare, oil) . Items that can be chewed in the mouth: mastic gum .

On the avoid: alcoholic beverages (rarely an option with ME/CFS), gluten-free dietaspartame (sweetener).

The same approach may be done for other mouth bacteria that you wish to eliminate, you should cross check that none of the substance are strong avoid for the “other end”.

More Readings:

Bottom Line

This person’s microbiome matches the pattern usually seen with ME/CFS and Long COVID. The suggestions are also in general keeping with what has been reported to reduce symptoms. The B-Vitamins are well established. Some other citations, Brain “fog,” inflammation and obesity: key aspects of neuropsychiatric disorders improved by luteolin [2015], Modulation of antigen-induced chronic fatigue in mouse model of water immersion stress by naringin, a polyphenolic antioxidant [2009]

The oral microbiome impacting the entire flow (including SIBO) seems to be well illustrated with this data. The bacteria strains from the Bristle Health report appear to be those known to cause issues in the mouth (and most are not reported on by other tests). This implies that the ideal pair of tests to deal with systemic health issue is likely Bristle Health and Thorne.

What is CFS Remission Site About?

I have been observing the Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) community for almost 35 years. I have been an active member of this community. I have also been in remission for it, but deeply interested in understanding it; I have had several relapses. I wanted to prevent future relapses hence great interest in reading and researching.

Microbiome Analysis of ME/CFS Patients

ME/CFS has a significant microbiome component and this is where my energy is focused in 2023. So far, we have seen 100% of people showing improvement (both subjectively and objectively) who have done a microbiome sample and followed the expert system computed suggestions from Microbiome Prescription. Click link above for a list of reviews.

During those decades I have seen a huge number of theories, suggested treatments and clinical findings. I have seen many “this cured me” which failed to deliver remission for anyone else. I have seen treatment plans proposed / sold by well-meaning MDs that worsen the condition and persisted for years. I see this still going on today for both ME/CFS and Long Hauler COVID.

My training is in science: mathematics, statistics, general sciences. I have been an instructor in those areas at many universities, colleges and even high schools. My remissions resulted from following gold or silver standard evidence. I have read several thousand published papers on ME/CFS (with and without brain fog).

What is on this site?

Most of the posts results from reading a new paper, readers asking questions, seeing a question asked on some online groups. The posts follow this pattern:

  • The question or concern that started the post
  • A review of all literature on the US National Library of Medicine, conference papers, etc.
    • Quotes provided from papers or titles
    • Links to the paper so people or their medical professionals can read for themselves
  • A bottom line section which are my conclusions inferred from the literature.

To quote Seargent Friday from the old Dragnet TV Series, “All we want are the facts, ma’am“.

Use the site as an Encyclopedia

There is another similar site, Encyclopedia Myalgic encephalomyelitis, [me-pedia.org], which I also use. I actually have had more page views than that site! What the difference? I seem to cover things in more depth. I just searched for “grapeseed” on that site and found nothing. I searched on this site and literally had dozens of posts cited. Resveratrol Revisited [2015], Resveratrol Recap [2017], Mast Cell Moderators — non-drugs and suspect bacteria [2023]

The fastest way to find information is to go to google search, enter site:cfsremission.com followed by what you are interested in.

I Promote No Protocol, I promote evidence based treatment.

As a statistician, I recognized that ME/CFS consists of many, many, many, different subsets. To treat successfully means getting information. I know that my own ME/CFS was usually triggered by the interaction of an inherited coagulation defect (Prothrombin G20210A a.k.a. Factor II Mutation) interacting with stress and a microbiome that goes bad with stress. What works for me may not work for another with ME/CFS.

My Unified Model of ME/CFS and Long COVID

I have a hypothesis on the causes of ME/CFS and a treatment approach (not a protocol) that is likely to reduce the severity of ME/CFS. Some may go into remission.

The Cause of ME/CFS

The cause is rather simple: anything that causes an alteration of the microbiome. This may be food poisoning , an infection (COVID, Flu, Lyme, Epstein-Barr virus), a vaccination, a prescription or over the counter drug, pesticides, bad diet. This alteration and happenstance cascade into a microbiome dysfunction that mucks up your system. Too much of some metabolites /chemicals are being produced, too little of others, the chemicals used by the body are “hacked” and the body manifests a huge variety of symptoms.

Treatment Approach

Over the 30+ years, I have been a good mathematical modeler. Trying to find a model that agrees with all of the facts, explains all of the observations and last, can make predictions that are testable. Not that many years ago I came to the realization that the microbiome dysregulation model was an extremely good fit. More important, it made predictions that could be tested.

A 1999 study in Australia found a common pattern with ME/CFS patients microbiome. If something helps ME/CFS then it is likely that this same thing would influence the bacteria found to move closer to normal. This post from 2013, Finally! Someone verified the 1999 Studies – Thank you Kenny De Meirleir! shifted me further down this path. Finding that the most effective antibiotic protocols for ME/CFS and Lyme would also correct the reported microbiome function (see Why Jadin’s Antibiotics Protocol usually work — Pasteur Institute got the solution right and the explanation wrong? ).

I keep monitoring ME/CFS studies. My current effort is dealing with improving the ability to correct the microbiome. This is done on a separate site, Microbiome Prescription, and a separate blog site.

I have a page linking to people experience with this approach. Each person is different.

Analysis Posts on Long COVID and ME/CFS

I believe that most ME/CFS people will improve significantly with microbiome testing followed by appropriate adjustments. This is often an iterative approach (test-adjust-repeat).

Stomach Acidity and ME/CFS

A reader dropped me this question

If am having a hard time understanding the scientific evidence regarding acidity in regards to cfs.. some people say that they have low stomach acid and therefore taking betaine HCl with food and some use sodium bicarbonate and talk about lactic acidosis. Furthermore, I’ve just read about alkalosis on cfsremission as a potential cause of certain unhelpful bacterial (over)growth.. 

Could you maybe elaborate on that? Also are PPIs or h2 antagonists rather recommended in cfs or is the opposite true?

Sorry but this is confusing me .. 

From a Reader in Europe

My Frame Work

One of the problems with ME/CFS is people grasping for solutions, patterns etc.  Usually out of desperation or frustration.  As a statistician, I know that approach is very prone to false positive discoveries. I have been observing the ME/CFS community for over 30 years (sometimes as a active member, other times in remission and interested).

As a result, I keep to gold standard information, i.e. studies on the US National Library of Medicine (PubMed) and in a few cases, ME/CFS Conference Reports (silver standards). Too often, I see turd standards on support groups.

There is a very simple logical measuring stick — if something is easy to measure and there are no studies then one should assume “this hypothesis has been studies many times and there has only been negative results (false hypothesis) — hence no study will be published” That is the norm in publications, finding no results is not worth publishing!

Question #1: Stomach Acid and ME/CFS relationship.

Answer: There is not a single study mentioning “Myalgic encephalomyelitis stomach acid” on PubMed, thus a relationship is very unlikely to exist.

Question #2: What about acidosis

Answer: Acidosis usually means blood acid level, different from stomach acid. Yes, there is some connection between stomach acid and blood acid level, but it appears to be weak. PubMed reports 29 studies.

  • The Gut Microbiome in Myalgic Encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS) [2021] cites D-lactic acidosis as a theory or hypothesis and cites an earlier study “No improvement in fatigue has been seen by targeting the D-lactic acid producing bacteria with antibiotics and probiotics” from Examining Clinical Similarities Between Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and D-Lactic Acidosis: A Systematic Review [2017] Note 2009 study below which instead cites neurocognitive dysfunction and NOT fatigue.
  • “This revealed severely affected ME/CFS patients to have higher rates of respiratory acidification ” [2020]
  • “Bioenergetic muscle dysfunction is evident in CFS/ME, with a tendency towards an overutilisation of the lactate dehydrogenase pathway following low-level exercise, in addition to slowed acid clearance after exercise” [2016]
  • “CFS simulations exhibited an increased acidosis and lactate accumulation consistent with experimental observations.” [2015]
  • “However, the CFS group achieving normal PCr depletion values showed increased intramuscular acidosis compared to controls after similar work after each of the three exercise periods with no apparent reduction in acidosis with repeat exercise of the type reported in normal subjects. This CFS group also exhibited significant prolongation (almost 4-fold) of the time taken for pH to recover to baseline.” [2012]
  • ” This study suggests a probable link between intestinal colonization of Gram positive facultative anaerobic D-lactic acid bacteria and symptom expressions in a subgroup of patients with CFS. Given this fact. this might explain neurocognitive dysfunction in CFS patients” [2009]
  • “Research data on magnetic resonance spectroscopy (MRS) of muscles and brain in CFS patients suggest a cellular metabolic abnormality in some cases. 31P MRS of skeletal muscles in a subset of patients indicate early intracellular acidosis in the exercising muscles. ” [2004]

I believe that every suggestion that works on the hypothesis that stomach acid is significant has been tried multiple times in clinical studies without any results — and thus not published.

Yes, there is acidosis but it is not in the stomach, it is dealing with the ability of the body to remove d-lactic acid from tissue (muscles, brain etc).

The suggestions being tossed around come from simplistic logic. For example:

  • If it is Wednesday, then it is raining.
  • If it is raining, then we are wet.
  • Therefore, if we are wet, it is Wednesday

The suggestions have a positive psychological effect and thus there may be placebo improvement. There is documented evidence saying placebos really help!

No ME/CFS Studies for these searches:

  • “Myalgic encephalomyelitis betaine”
  • “Myalgic encephalomyelitis HCl”
  • “Myalgic encephalomyelitis sodium bicarbonate”

There was an old egroup called: CFSFMExperimental back in the 1990’s. I saw those suggestions tried, become popular and then fade away because of no results.

Bottom Line

It is simple: Use Gold standard research, at least silver standard if it is from a conference report in the last 5 years (older reports should have had published studies by now). This approach was the basis of my recovery from ME/CFS.

Social Comment

Two studies were cited:

Data showed that MRI studies frequently reported structural changes in the white and gray matter. Abnormalities of the functional connectivity within the brainstem and with other brain regions have also been found. The studies have suggested possible mechanisms including astrocyte dysfunction, cerebral perfusion impairment, impaired nerve conduction, and neuroinflammation involving the brainstem, which may at least partially explain a substantial portion of the ME/CFS symptoms and their heterogeneous presentations in individual patients.

Brainstem Abnormalities in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Scoping Review and Evaluation of Magnetic Resonance Imaging Findings [2021]

Brainstem parasympathetic circuits that modulate digestive functions of the stomach are comprised of afferent vagal fibers, neurons of the nucleus tractus solitarius (NTS), and the efferent fibers originating in the dorsal motor nucleus of the vagus (DMV). A large body of evidence has shown that neuronal communications between the NTS and the DMV are plastic and are regulated by the presence of a variety of neurotransmitters and circulating hormones as well as the presence, or absence, of afferent input to the NTS. These data suggest that descending central nervous system inputs as well as hormonal and afferent feedback resulting from the digestive process can powerfully regulate vago-vagal reflex sensitivity. 

Brainstem Circuits Regulating Gastric Function [2011]

To me, this is a case of simplistic logic: The brain stem has abnormalities, the brain stem controls digestive function (stomach acid is NOT mentioned, only “glutamic acid decarboxylase-IR used as a marker”), thus the abnormalities control stomach acid. There are no logic connection, we need to identify which abnormalities impacts stomach acid and have evidence that it actually results in less stomach acid. IMHO, it is an attempt to depend a belief by “tossing a word salad from studies.”

ME/CFS Patient – First Microbiome Sample

The Ask

I’ve been reading the cfsremission.com site for a few years now and respect and appreciate your work very much! Today I received results from my first test with Biomesight and have uploaded to microbiomeprescription.com, however I’m struggling to know where to go from here.

It looks like I have high F. prausnitzii which goes against some of the CFS research. I can also see zero E. coli (I think) and low bifidobacteria/lactobacillus, but not sure there are strep/staph/klebsiella/other pathogens which I was expecting to see, owing to my issues with histamine/bloating, am I correct?

I’m reluctant to go ahead with taking herbal antimicrobials as I’m not sure exactly what I should be trying to kill off. The suggestions that come up mostly seem to be fibres/prebiotics which I haven’t typically responded well to in the past (worsened bloating and oily skin).

My backstory:

My issues started with the persistent abdominal bloating and sneezing/nasal congestion about 5 years ago. The bloating never goes away, and now I’ve progressed into a state of moderate but unrelenting fatigue, muscle pain and inflammatory issues (dry eyes, etc.), made worse by COVID and then the Pfizer jab last year which pushed my ’steady state’ in terms of energy to a lower level than it ever has been. I know that the root cause of this all is my gut. For example, I can eat regular yoghurt and the next day I will wake up with a back ache, 50% more tiredness and very sneezy. I did test positive for SIBO around 3 years ago but multiple rounds of rifaximin did nothing to help, neither did herbal antimicrobials. The bloating seems to be inflammatory/mast cell related rather than actual gas.

Symptoms:

  • – Crushing fatigue/muscle weakness/PEM (do not have a CFS diagnosis but the symptoms fit)
  • – General inflammation/muscle pain
  • – Freezing cold hands/feet all the time
  • – Sneezing/nasal congestion/itchy throat especially after histamine containing foods
  • – Persistant abdominal bloating which never goes away 
  • – Brain fog
  • – Acne/very oily skin
  • – Dry eyes

For other analysis of the microbiome of people with ME/CFS, see this index.

First Questions Researched

Low Faecalibacterium prausnitzii is seen in several studies for ME/CFS. This person’s level is at a huge 23.7% of the microbiome — the 93%ile. However, for ME/CFS sibling (Long COVID) we have two studies reporting high levels for Long COVID (with 4 reporting Low) and three for COVID being high and one being low. In other words — atypical levels are to be expected. Note that he had COVID and then the Pfizer jab – so Long COVID is likely a better diagnosis than ME/CFS (at this point). The two tend to merge over time.

Usual Analysis Approach

The percentile x percentage breakdown shows the typical pattern for ME/CFS and Long COVID: Over representation on the low percentiles and under representation of the high percentiles.

PercentileGenusSpecies
0 – 92122
10 – 192225
20 – 291822
30 – 391718
40 – 49919
50 – 591623
60 – 691214
70 – 791016
80 – 8997
90 – 9959

The likely causes suggested are: Faecalibacterium prausnitziiPhocaeicola coprocola and Bacteroides stercoris. The top one was already flagged by the reader.

Going over to Dr. Jason Hawrelak Recommendations, we see a lot out of range.

TaxonomyRankLowHighYour ValueStatus
Bacteroidiaclass03537.029Not Ideal
Akkermansiagenus130.003Not Ideal
Bacteroidesgenus02033.827Not Ideal
Bifidobacteriumgenus2.550.349Not Ideal
Blautiagenus5104.049Not Ideal
Desulfovibriogenus00.250.002Ideal
Eubacteriumgenus0150Ideal
Lactobacillusgenus0.0110.002Not Ideal
Methanobrevibactergenus0.00010.020Not Ideal
Roseburiagenus5102.658Not Ideal
Ruminococcusgenus0158.32Ideal
Proteobacteriaphylum043.705Ideal
Bilophila wadsworthiaspecies00.250.265Not Ideal
Escherichia colispecies00.010Ideal
Faecalibacterium prausnitziispecies101523.71Not Ideal
Overall Percentile Ranking56.5% 

Looking at PubMed matches we see that he is somewhere between these two siblings

  • Long COVID   (45 %ile) 10 of 204
  • COVID-19   (18 %ile) 3 of 118
  • Chronic Fatigue Syndrome   (66 %ile) 4 of 64

Going Forward

He wrote “For example, I can eat regular yoghurt and the next day I will wake up with a back ache, 50% more tiredness and very sneezy. ” Most yogurt contains large amount lactobacillus acidophilus (probiotics) which is high on his to avoid list. In general lactobacillus should be avoided with brain fog because many species produces d-lactic acid (See my 2019 post Reminder of D-Lactic acidosis and ME/CFS – which contains the name of bacteria that may contribute to the issue). If you cannot find a yogurt free of these bacteria, you may wish to give yogurt up. I would suggest the following probiotics as likely being good choices:

He wrote ” multiple rounds of rifaximin did nothing to help, neither did herbal antimicrobials.” Well, that antibiotic is a negative, and like the lactobacillus yogurt above is likely to contribute to the microbiome issues. He did not specify the herbs that he tried.

-75.8rifaximin (antibiotic)s

Typical herbs used for SIBO [Src] are below. Having no results (or negative results) is not surprising.

  • Allicin – positive
  • Oregano – positive
  • Neem – negative
  • Berberine –  negative
  • Peppermint – negative

The top herbs suggested

He wrote “The suggestions that come up mostly seem to be fibres/prebiotics which I haven’t typically responded well to in the past (worsened bloating and oily skin).’ We see that almost all of the prebiotics are below 100 priority (item #170), so they would not make it into my preferred list (I prefer to keep to the to 100 or less). 25% of these are actually below a -200 priority. We also see low fiber diet is high priority. So his experience and the computations are in agreement

Other Items

In terms of common antibiotics for ME/CFS, near the top we see metronidazole (see this 2017 post) and erythromycin (See Azithromycin in Chronic Fatigue Syndrome (CFS), an analysis of clinical data [2006], where 58% improved). If you can persuade your MD to prescribe.

Supplements of note: Taxifolin (See 2021 post dealing with histamine), glutamine (The Role of Glutamine in the Aetiology of the Chronic Fatigue Syndrome [2011] ). Nothing in the flavonoids, polyphenols list stand out. In terms of prefer sugars: chitosan,(sugar),sucraloseraffinose(sugar beet) – most sugars are marginal or negatives. In terms of Vitamins: Iron and magnesium.

Bottom Line

In my years of reviewing literature on ME/CFS, the typical results are similar to the Azithromycin study above: it works for X% of the people and has no or negative effect for the rest. It is my hypothesis/belief that the microbiome determines if a substance works or not.

Above, you see my preferred approach — look at the top 5-10% of suggestions and then cross reference the literature to see which are known to help some. The alternative of working from studies (without reviewing the microbiome) has failed to produce consistent positive results over the decades that it has been tried. The other key item is to look at the bottom 20% of suggestions and eliminate as many of them that you can.

For “Just give me suggestions”, I prefer the priority to be over 150 if possible for takes, and below 0 for avoids.

Remember this is a multiple path journey. Keep on the suggestions for 6-12 weeks and then retest. The suggestions may shift a bit with each course correction.

Postscript – and Reminder

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.

The answers above describe my logic and thinking and is not intended to give advice to this person or any one. Always review with your knowledgeable medical professional.