ME/CFS Relapse And Recover Report #6

I received my ubiome results today (sample done on 7/29/2019) – so 10 days from sending it off.

Back Story

At the start of this year, stress at work increased and requests to management and HR to be moved to a different group with a different manager fell on procrastinating ears. I was showing early physical signs of excessive stress. In the middle of March, there was a sudden relapse of myalgic encephalomyelitis, I could feel my body change literally within an hour. Drive home and started taking sick time.

The first thing that I knew that was essential was knowing what was happening with my microbiome and to start counteracting it via my Microbiome Prescription web site. Once I got my reports, I proceeded to implement the suggestions with retesting every month because the microbiome is a moving target.

Fast forward, all of the typical myalgic encephalomyelitis symptoms are gone except for one – very limited duration of physical activity before sudden complete exhaustion hits. Over the last month, the duration has significantly increased but still only a fraction of what I could do in January of this year.

I observed that there was immediate drop of some bacteria groups at onset, followed by additional groups dropping off in the next period. The delay drop off is expected because when the first group stop producing, the reserves of their metabolites (chemicals) are still circulating and slowly get consumed until they drop below a threshold and the other bacteria are starved out.

Links to my prior reports are linked to below:

This post review the high lights of what has happening. The microbiome lab results agree with my observations of myself.

Ubiome Charts

The Diversity score is sitting at 87%ile (more species than 9 out of 10 people — a real cosmopolitan gut) but appears to not reflect the ME/CFS state in any way. The numbers for diversity and wellness reported by uBiome is shown below, they do not appear to correspond well with the onset and likely of limited or no value.

Anti-Inflammatory Microbiomes

Propionate continues to improve significantly, still slightly below my pre-relapse level
Polyamine continues to be in my historic pre-relapse range
Butyrate is maintaining the improvement. It was usually low pre-relapse
Akkermansia and Lactobacillus has made a major improvement since the last time

And for yogurt specific strains, it is much improved

GABA production is improving, serotonin has come down a bit (but still higher than pre-lapse level)

Microbiome Site Charts

I put little value in this ratio beyond being an indicator of change happening.
Bifidobacterium died with the onset, attempted to make a come back and perished again.
Lactobacillus followed the same pattern, attempted a come back that failed — but eventually managed to get going — Looking at strains, they changed every sample.
Similar pattern, collapse – attempt to recover that failed, then slow recovery afterwards

This bacteria disappear with onset and has not returned
We see this disappeared and has been making a good recovery to the typical levels from the past.
Kluyvera is identical to E.Coli for 16s Reports. With onset, it disappeared — characteristic of CFS as reported back in 1998.
This taxonomy may play a significant role for me. According to data punk, it is a known inhibitor of bifidobacterium BUT NOT of Lactobacillus nor Akkermansia. This is well reflected in my results.
This bacteria also looks like it may be playing a significant role.

We do find this bacteria is ME/CFS associated in the literature and successful treatment.

Another taxonomy that disappeared and is now recovering

A few interesting Species

End Products

According to this experimental page, I am producing high levels of:

Last Sample. All of the low levels in prior samples have disappeared

Probable Symptoms Predictions

We had a number of hits (75% accurate) — some of which I noticed and dismissed until I read the list. The items are:

  1. Sleep: Waking up early in the morning (e.g. 3 AM)
  2. Onset: 2010-2020
  3. General: Heavy feeling in arms and legs
  4. Pain: Joint pain (sore legs from doing short walks)
  5. General: Heavy feeling in arms and legs
  6. Following are long time symptoms
    1. Neurological – Vision: inability to focus eye/vision
    2. Comorbid: Methylation issues (MTHFR)
    3. Neurological-Sleep: Sleep Apnea (a.k.a. Snoring)
  7. Intermittent
    1. Immune Manifestations: Constipation

Suggestions are very similar to the last ones

Remember these are SPECIFIC to my microbiome, they probably do NOT apply to you.

  • Take List
    • Cranberries — I have been doing a glass of juice with breakfast.
    • Aspirin –
    • Most of the B vitamins, Vitamin D
    • NAC, Melatonin
    • Zinc
    • Monolaurin – which is new and an old favorite
  • Avoid List
    • Red Meat — I have been chickening out for the last month!
    • Vegetarian diet, low protein diet
    • Walnuts
    • Slippery Elm
    • Licorice
    • Lactobacillus Plantarum (i.e. Align), also Digestive Advantage, duraflora, etc
    • Triphala

On the probiotic list, #1 is Activia Drink, also Mutaflor. On the no known impact, I found enterogermina (which I take once a week — it is known to persist after just one dose), and miyarisan (which I use as a lozenge, sucking slowly in the mouth — it has cleared up dry-mouth and nasal issues ). Symbioflor-2 is a neutral — but since Mutaflor is on the to take list and this is also an E.Coli probiotics, it will also be done regularly (like enterogermina, it is known to persist after a single dose for several days).

Flavonoid Suggestions

Apples, Banana, Almonds as snack foods (at least one of each a day), Cinnamon, thyme,basil, nutmeg for spices. Peppermint (2-4 cups of peppermint tea a day). Oregano is high in Luteolin so I will be adding Oregano tea.

Bottom Line

I continue to move to recovery: both in terms of symptoms (decreasing) and in terms of microbiome results. This is my first recovery without the involvement of any antibiotics, which implies to me that they are not always necessary.

The pattern that I am using is simple:

  • Know where your microbiome is at (new uBiome test every 4-6 weeks)
  • Trust the AI Engine to make better than the average physician suggestions, It remembers 58,000 facts and apply them is a consistent fashion.
  • Be patient and consistent.

Until I got the latest results and realized from doing yard work last weekend (wife: You have been out working on the yard a long time!), I was starting to have doubts about continued improvement. This type of doubt (from slow improvement) is an ongoing challenge for recovery — people forget (especially with brain fog and memory issues) how they were a month ago and incorrectly assume no change. The joy of microbiome analysis is that you have lab results showing the changes (even when symptoms may not have changed much).

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