This is a continuation of my last post looking at Multiple Chemical Sensitivity (MCS) – A Cause Found? This resulted in a set of bacteria identified that appear to be associated.
For other analysis of people with ME/CFS see this page
Backstory
After reading your blog for many many years I finally managed to get a microbiome sample done (Biomesight). I suffer from debilitating MCS (multiple chemical sensitivity), mold sensitivity, and associated CFS. I have been isolated at home for almost 20 years now. Pretty much unable to function in any way normally, because of these sensitivities.
I think it all started in early 2000 with food poisoning from a poorly cooked chicken, that had been left out warm for too long. After this chicken meal my body simple went haywire. My gut was so sensitive that even drinking just a glass of water produced something similar to an anaphylactic shock.
It took several months to subside, and for me to completely revamp my diet and figure out what few items I was able to eat.
My body feels toxic. Like I am being constantly poisoned. Main symptoms are severe bloating and gas, extreme irritability and mood changes, brain fog and lethargy, poor blood flow which leads to lactic acid buildup everywhere, narrowing of vision, sleepiness to the point I call it “coma sleep” (I would not
wake up from these even if the fire alarm went off). Tinnitus, also have muscle twitches and probably 20 other symptoms I forget.Fast forward to today, my MCS is so bad that I cannot even read a book because the fumes from printed ink causes a reaction. My body feels toxic. Like I am being constantly poisoned.
Through the years I have spent all my available cash on trying everything I can think of. Herbs, treatments, devices, gadgets. I have found a handful of herbs and supplements that initially gave me relief, but after a few weeks always stop working. Never found a permanent solution. Always temporary, quickly followed by developing resistance.
I’ve been reading your blog for a long time, but because of the mental and physical lethargy, it took me this long to even manage a microbiome analysis.
Do you have any experience with MCS? I am fairly certain this is a microbiome issue, but I have no clue what to do, and all my attempts have been just shooting in the dark trying to see
Reader in Europe
if anything would stick.
Analysis
The typical ME/CFS pattern of over representation of 0-9%ile. This is in contrast to MCS where the cause appears to be over population of a few demanding bacteria. A “normal” microbiome will have all of the Percentile ranges being about the same number.
| Percentile | Genus | Species |
|---|---|---|
| 0 – 9 | 72 | 97 |
| 10 – 19 | 27 | 21 |
| 20 – 29 | 13 | 11 |
| 30 – 39 | 13 | 15 |
| 40 – 49 | 10 | 16 |
| 50 – 59 | 19 | 20 |
| 60 – 69 | 15 | 19 |
| 70 – 79 | 7 | 17 |
| 80 – 89 | 11 | 16 |
| 90 – 99 | 8 | 13 |
The likely to be important for the above shift is just a single bacteria family.
| Rank | Bacteria | Importance |
|---|---|---|
| genus | Roseburia | 3.4 |
| species | Roseburia faecis | 2.5 |
Looking at the different Health Filters 🕵️
- Potential Medical Conditions Detected – nothing of concern
- Bacteria deemed Unhealthy : Only Prevotella copri stands out, this is associated with mold, fungi
- Source may be internal, in food, or external.
- Of special concern because of this study: Moist and Mold Exposure is Associated With High Prevalence of Neurological Symptoms and MCS in a Finnish Hospital Workers Cohort [2020]
- Dr. Jason Hawrelak Recommendations: 98.8%ile – so no major concerns
Going over to [Special Studies] / [ From Special Studies] we see the typical matches — which also matches his symptoms:
As a result of the MCS Research post, I went over to the [Research Features] tab and picked the new experimental item shown below.
The likely bacteria are pre-selected.
Remember that we are not dealing with a single bacteria causing the problem, rather different combinations of bacteria forming a “cartel”
Building Suggestions
To speed (and simplify) the process, we start with the ‘Just give me Suggestions’ on the profile tab. This build a consensus using:
- Standard Lab Ranges (+/- 2 Std Dev)
- Box Plot Whisker
- Kaltoft-Moltrup Normal Ranges
- And then does a Hand Picked of items deemed important (Roseburia) cited above.
While the MCS associated bacteria above would likely be included by this, we do a fifth set of suggestions by hand picking these and getting those suggestions.
The MCS specific suggestions are below:
And the avoid:
Going over to Consensus
On that page, we sort by Take Count from highest to lowest. Items with a count of 5 addresses all concerns. The top of the list are:
- cannabinoids
- high animal protein diet
- Followed by many antibiotics interspersed with the following
- thiamine hydrochloride (vitamin B1)
- melatonin supplement
- Vitamin B-12
- Hesperidin (polyphenol)
- linseed(flaxseed)
- Caffeine
- Arbutin (polyphenol)
Filter and looking for “5”
- Probiotics: nothing
- Amino Acid, Diet Style, Foods, Herb or Spice – listed above
- Amino Acids, above plus
- Prebiotics
- Sugars
- Vitamins
The smallness of this list indicates the problem of trying to serve many masters / addressing different goals.
Flipping to Avoids (Sorting by Avoid Count), we find nothing that is all “5” with the 4’s including: Iron, Vitamin E, Vitamin A, Vitamin D.
Returning to MCS specific probiotics – we see some (bacillus subtilis, clostridium butyricum aka Miyarisan, and bifidobacterium longum bb536 ). None of these items appear in the [Only] Positive Impact commercial probiotics – indicating that while overall positive, there are some negative impacts).
Bottom Line
Hoping for probiotics solutions failed to find any strong candidates. In terms of prescription items, these antibiotics are the top suggestions neomycin and lymecycline . It is interesting to note “Neomycin is not absorbed from the gastrointestinal tract and has been used as a preventive measure”[wikipedia]; so it’s impact is confined to the microbiome. Lymecycline is a tetracycline which also include minocycline and doxycycline — two antibiotics often used by ME/CFS specialists.
Reader Feedback
It looks like there’s not much to do, except perhaps antibiotics.
I was once prescribed ciprofloxacin for a lung infection, and all my symptoms went away for a couple days. They returned after the cipro course was completed. Later I’ve learned this antibiotic is very dangerous. So not very interested to test that particular type again.
Thiamine B1 I’ve found through experimentation that it helps a bit, as well as resveratrol (both listed among the text and images). High protein diet also helps, which was also listed.
A few herbal antibiotics also help, so the killing part does work. In fact the antibiotic route has always
produced better results than the nutritional path. Well, at least the antibiotic route produces immediate
results. Perhaps the nutritional path produces more sustainable results though, if I could figure it out.The Lymecycline I would certainly want to test. Have to figure that out also.
It is nice to get feedback that the suggestions and the person’s experience doing multiple random experiments agree. The stated goal of Microbiome Prescription is to give better suggestion than random suggestions off the internet or ad hoc trials suggested by MDs.
As a FYI, I have always been an advocate for Cecile Jadin approach for antibiotics, single course, a break, then a different antibiotic (preferable a different family).
Q: Suggestions for labs for fungi etc?
Xenogene – Enevia Health which tests for these
Or
Thorne Labs: https://www.thorne.com/products/dp/gut-health-test
This is what is in their data file for a person (i.e. detected only)
"Eukaryota","Fungi","Ascomycota","Dothideomycetes","","","","","","","","","","0.001554","0.00052608","0.0014506","77.3"
"Eukaryota","Fungi","Ascomycota","Eurotiomycetes","","","","","","","","","","0.0006793","0.0017786","0.003532","2.5"
"Eukaryota","Fungi","Ascomycota","Leotiomycetes","","","","","","","","","","0.0006979","0","0.0003654","90"
"Eukaryota","Fungi","Ascomycota","Saccharomycetes","","","","","","","","","","0.01638","0.00071344","0.0019584","99.2"
"Eukaryota","Fungi","Ascomycota","Sordariomycetes","","","","","","","","","","0.001107","0.0016878","0.0034788","18.9"
"Eukaryota","Fungi","Basidiomycota","Agaricomycetes","","","","","","","","","","0.0003536","0.00054734","0.0017092","17.2"
"Eukaryota","Fungi","Basidiomycota","Exobasidiomycetes","","","","","","","","","","0.0001024","0","0.00034712","52.2"
"Eukaryota","Fungi","Basidiomycota","Malasseziomycetes","","","","","","","","","","0.0001582","0","0.00010162","73.3"
"Eukaryota","Fungi","Basidiomycota","Tremellomycetes","","","","","","","","","","0.0002047","0.00023646","0.000608","17.9"
"Eukaryota","Fungi","Basidiomycota","Ustilaginomycetes","","","","","","","","","","0.00008375","","",""
"Eukaryota","Metazoa","Chordata","Mammalia","","","","","","","","","","1.985","0.0042838","0.06166","99.5"
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