Picking up the pieces and starting again

It has been a year since I had Covid-19 I started to deteriorate after it and fell into a limbo of not having the energy to do anything and move on with treatment, I have gave up supplements, antibiotics, probiotics not taking anything, even if I had them in stock, pretty dire, even had very dark thoughts from nowhere that life is not worth living. I got cervical instability diagnosis in 2020 and the Covid-19 infection that made me abandon the microbiome manipulation road, a very bad decision when I look back now. I got diagnosed with a possible mast cell disorder, MCAS is much more worse then CFS, I got a reaction in airport in September 2022 wanted to travel to Italy for a consultation, reacted to fumes in airport was unable to board the plane, almost called the ambulance, the MCAS appeared after Covid-19. I am taking a H1 and H2 for it, and used to take sodium cromoglicate but I got insomnia from it, doctor here told me I am the first patient that has gotten insomnia from sodium cromoglicate. The interesting thing my cognition improved but my physical state deteriorated, I got POTS.

I have also started a YouTube channel to share my story and to keep me motivated to continue:

To recap what Covid-19 in 2022 infection gave me and I still have:

  • -Insomnia
  • -Lack of motivation
  • -POTS
  • -New food intolerances
  • -Reaction to the environment(possible MCAS)
  • -Easy bruising(now afraid to take “thick blood” supplements)
  • -High cholesterol and triglycerides
From Reader

Questions from Reader

First, the site does not diagnosis — it is based on association. What is association? It just means that two things tend to happen at the same time. Sometimes there is a real connection — other times the connection is due to other factors. For example, the number of children in a family has declined over the last 50 years. The usage of the internet has increased. There is a statistical association between the two but it does not mean that internet use causes less kids, nor does it mean that having less kids mean more internet use (which may actually be true!).

  • Does it show I have POTS, I attached my CellTrend result which is positive for POTS
    • You only have a 10% match to bacteria seen in other people who have reported POTS. So, if it is POTS, it is likely atypical POTS.
    • I do NOT see on the CellTrend results any thing about POTS. Was it a MD’s opinion based on ???
  • Does it give avoid food all casein and lactose foods and nuts, I have attached my IgG intolerances testing
    • No, it does not deal will allergies. It suggests food that are likely to positively or negatively impacts the complete microbiome.

Analysis

Going over to Special Studies, COVID Long Hauler leaps out!! It is the best description of the current state. This appears to be common pattern of ME/CFS people Post COVID: The signature of Long COVID dominates over ME/CFS. This may be due to the variation of bacteria over time with ME/CFS. With a recent case of COVID, there is much less variation and thus a stronger signature is found.

Looking at the distribution of bacteria by percentile, we do not see the count for each range being close to each other (expected result for a “normal’ microbiome). The 0-9% is only 32% instead of expected 10%, which is less than other samples that I have seen at 60%.

PercentileGenusSpecies
0 – 97279
10 – 191728
20 – 291415
30 – 392032
40 – 492424
50 – 592022
60 – 691320
70 – 791419
80 – 8997
90 – 99812

Below this on the page (added on April 1, 2023) are “Likely Key Bacteria Causing Above”

RankBacteriaImportance
speciesFaecalibacterium prausnitzii (in prior)3.4
genusFaecalibacterium (in prior)3.3
genusRoseburia (in 2021)2.3
speciesPhocaeicola massiliensis1.9
speciesBacteroides stercoris1.9
speciesRoseburia faecis (in 2021)1.8

Looking at trend over 4 samples, we see the dramatic jump in the %age of bacteria that are under 10%ile.

Criteria9/26/20221/9/20223/8/20217/26/2020
Lab Read Quality113.33.63
Bacteria Reported By Lab808476632463
Bacteria Over 99%ile15120
Bacteria Over 95%ile15311755
Bacteria Over 90%ile28544888
Bacteria Under 10%ile28018650
Bacteria Under 5%ile2465035
Bacteria Under 1%ile2261016
Percent Under 10%ile35%4%1%11%
Lab: BiomeSight
Rarely Seen 1%6231
Rarely Seen 5%37102018
Pathogens40353334
Outside Range from JasonH5566
Outside Range from Medivere17171313
Outside Range from Metagenomics6677
Outside Range from MyBioma3399
Outside Range from Nirvana/CosmosId18182020
Outside Range from XenoGene34343737
Outside Lab Range (+/- 1.96SD)210723
Outside Box-Plot-Whiskers45728899
Outside Kaltoft-Moldrup1928986133
Condition Est. Over 99%ile14214
Condition Est. Over 95%ile18526
Condition Est. Over 90%ile48736
Enzymes Over 99%ile055051
Enzymes Over 95%ile1414413133
Enzymes Over 90%ile9118660231
Enzymes Under 10%ile2186292552
Enzymes Under 5%ile1611737408
Enzymes Under 1%ile8602163
Compounds Over 99%ile043028
Compounds Over 95%ile17951379
Compounds Over 90%ile6514543128
Compounds Under 10%ile1104983960958
Compounds Under 5%ile1088977950934
Compounds Under 1%ile1067975948913

Going Forward

To build a consensus, I will do.

This now rolled into a single click! “Just give me suggestions” – It results in the short dumb down list with links to the full details. See the video below.

The suggestions are attached:

The detail lists are below

That’s enough for Now

I could start digging into the symptoms and other issues cited above, but with the Long COVID signature being so strong let us not over-engineer. We have a course for the first leg of recovery.

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.