The ME/CFS Quest for Health

ME/CFS can often become a multiple year journey to resolve. This is a continuation of this ongoing saga.

Back Story

Since the last test I have been cycling these:

  • amoxicillin
  • Noni
  • Propolis {Bee glue}
  • Dandelion
  • allium sativum {garlic}
  • Parsley
  • Grapefruit seed extract
  • mutaflor

I have not been feeling so well lately (since the last 6 months). I would say that my symptoms has become worse. Earlier it has always felt as I have done some progress but the last 6 months it has been the opposite. 

At the end of January I had my appendix removed. Since then I have felt even worse. Received some antibiotics while I was hospitalized. Earlier I got rid of my muscle and joint pain but it has come back and I have much bigger issues with my red nose and my body feels very stressed. Also feel very bloated.

A summary of my biggest issues:

  • Get the red nose (some form of rosacea). 
  • Feel fatigued (both physically and mentally). 
  • Feeling stressed. 
  • Brain fog.
  • Bloated.
  • Lots of gas – I fart and burps a lot. 
  • Issues with allergies
  • Muscle and joint pain

For the last 3 years I’ve been eating large amounts of rye and oats.

  • Around 150-200 gram of rye bread every day.
  • Around 70 gram of oats every day.
  • Been eating low fat, low protein and high carb (specially from rye, oats, apple juice and potatoes) because this diet seem to reduce my symptoms.

As soon as I start to eat high meat and high fat my symptoms get worse.

Quick Overview

I will continue with a table showing recent changes (see above for earlier values)

Criteria3/30
2025
12/3
2024
9/2
2024
1/22
2024
2/22
2024
Lab Read Quality7.69.89.17.99.7
GanzImmun1014161615
Outside Range from Lab Teletest21172320 24
Outside Lab Range (+/- 1.96SD)1071210
Outside Box-Plot-Whiskers5947485442
Outside Kaltoft-Moldrup11185113123 139
Bacteria Reported By Lab718689600511666

The most striking change was the 4% increased number of bacteria. Looking at Symptom Pattern Matching, we see significant improvement with 15% with significant improvement.

Current Takes Evaluation

I have put together a video trying to describe the complexities of shifting the microbiome. My own experience during a flare was “suggestion whiplash”, the suggestions from one test became avoid on the next and became suggestions on the next test. This is not what I was expecting and caused me to question the process — until I dug deeper and did some modelling. My understanding is in this video.

What he reports taking is below. I look at the suggestions and added the weight after each.

  • amoxicillin: +490.3
  • Noni -206.1
  • Propolis {Bee glue} +19.5
  • Dandelion + 155.3
  • allium sativum {garlic} -214.4
  • Parsley + 145.3
  • Grapefruit seed extract +168.8
  • mutaflor -78.8

Takes flipping to avoids is not unexpected. It does emphasis the need to do regular tests, especially when progress slows or reverses.

Building Suggestions

Since we have symptoms we use Beginner-Symptoms since it will focus on bacteria associated with symptoms present.

Looking at the Consensus report we see the top 3 antibiotics are all ones associated with CFS

The other items is interesting and would suggest Whole Milk (high Fat) (Yogurt) from A2 cows, I do not know if that is easily available in his country. I happen (as a recovered ME/CFS person) to have some to my daily morning porridge.

Looking at categories

KEGG Probiotics

The only one that is indicated is switching to symbioflo 2

Unexpected suggestions profile

The suggestions above do not fit typical patterns that I have seen. I went back and did “just give me suggestions” in case the bacteria filtering by symptoms caused some odd twist. Results were similar as shown below.

One More Analysis

I looked at the prior Dec 24 sample and compare the KEGG Compounds to the current sample starting with the highest percentile ones:

While the bacteria changed, the extreme metabolites remained high but with a few reducing. There is a potential to generate suggestions based on these KEGG compounds — a little messy and definitely pushing inference into new turf.

I have decided to build an adjacent Suggestions Agent using metabolites ONLY. The microbiome is a very complex system and there is a possibility that the metabolites approach may work better. Stay tune!

Reconciliation of Recent Diet and Suggestions

During my own recovery, I had “whip-lash” between suggestions from one test until the next test. One test results had to take, the next result was the same items on the avoid list. This “pendulum” swinging back and forth may be happening here. My own response was to be “less religious” in keeping to the suggestions (i.e. “moderate compliance”) and retest after 6 weeks doing suggestions. The pendulum swing dampened down and lead to a full remission (with patience).

The 300 grams of fiber (Rye, Oats) should be reduced. If you can get a willing MD, then you may wish to rotate to a different antibiotic because of the risk of antibiotic resistance occurring.

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