Severe ME/CFS from long COVID

Backstory:

I got COVID in Feb 2022. Over the next few months I developed long COVID symptoms. Within 6 months I was severe (bedbound), and within a year I was very severe (24/7 dark silent zero stimulation bed rest). About six months ago I progressed back to being severe and have stayed there. I’ve been officially diagnosed as having ME/CFS as well as long COVID.

I have basically all the symptoms but the worst are light and sound sensitivity, post exertional malaise, brain fog, fatigue, and cognitive and sensory processing issues.

I have severe episodes of d lactic acidosis when I eat dairy. D lactic acidosis was actually my very first long COVID symptom.

If it’s relevant – all “mitochondria boosters” make me significantly worse. Ubiquinol/CoQ10 is what pushed me into being very severe. [Editor note: We have limited information on Coenzyme Q10  and cannot propose reasons for this response – it was not listed in the suggestions]

A few months ago my GI symptoms (diarrhea, bloating, stomach pain, etc.) got more severe, I think as a result of taking Pepcid[Famotidine] daily for MCAS. I tested positive for H Pylori and was off the charts for methane and hydrogen SIBO. [Famotidine is a weak positive, but positive]

I did a GI Map before starting treatment, which is uploaded to my profile. I then did 2 weeks of metronidazole + doxycycline + pepto bismal to try to tackle the H Pylori. My histamine intolerance and d lactic acidosis got MUCH worse during treatment. I did my BiomeSight test a week after finishing antibiotics.

Then I did 2 weeks of Xifaxan + Nitazoxanide + PHGG for the SIBO. I just finished this. My bloating is a little better but my histamine intolerance and d lactic acidosis worsened even further and now my cognitive function is the worst it’s been in months.

I’ve just started Mutaflor and have also obtained Symbioflor-2, Miyarisan, and Equilibrium, and am planning on cycling through those (in addition to whatever recommendations pop up from my BiomeSight test).

Analysis

The Eubiosis index and percentages of percentiles show quite dramatic (and a typical) results. We have a large number of bacteria which I am inclined to described as “pedal to the metal”. These are all at extreme levels. Chao Index and Shannon Index are at 0%ile and Simpson Index at 83%ile.

Some of these extremes bacteria ( > 90%ile) with known health impacts are:

Morganella is a known extreme histamine producer (Histamine and biogenic amine production by Morganella morganii isolated from temperature-abused albacore [2000]) which accounts for the histamine issues. The KEGG estimate of histamine producers is up at 84%ile. Most of KEGG estimators are at extreme – for example Oxalate is at 100%ile and Oxalate degrading is at 0%ile [which indicates a risk of kidney stones developing over time]

The Bacteria deemed unhealthy is an impressive list.

Going Forward

The joy of using an expert system is that despite a very complex microbiome, the system will grind thru all of the data and produce a better results than a human doing so. A human will typically pick one or two bacteria to address “and see what happens”.

The person has marked their symptoms so we have five sets of suggestions going into our consensus.

The top suggestions have a few antibiotics but a lot of items are intermixed between them. In such a scenario I favor not doing antibiotics.

One item in the avoids really stand out, proton-pump inhibitors (prescription) at -637.

The following are items picked above 400 or below 300. The reason to do 50% of the extreme button is not to overwhelm the brain with too many suggestions. Check the site for dosages[Click here].

So, for breakfast every day: Barley porridge with soy milk with slices of bananas/apples?

One at a Time and Rotate

We want to identify items that help or hurts you specifically. Tossing everything in at once denies us this knowledge. My general guidance would be:

  • Spices and Herbs with meals
  • Probiotics at bed time

Break the suggestions into 4 groups and take them for a week at a time. After 8 -12 weeks (2-3 cycles) get a new microbiome test to see changes. Keep up this pattern until you have new test results.

Remember our goal is to destabilize a stable dysbiosis. We effectively want to do a guerilla war against it — constantly hitting it from different places.

Questions

  • Q: Question about herbs/spices. Is the recommendation to take them at the same time as probiotics? Or do a week of herbs, then a week of probiotics, and keep trading off? You’ve posted before about how some of the herbs can nullify the probiotics so I’m not sure how to stack correctly. 
    • Answer: If you click on one the herbs and spices you will be taken to a detail page where the first section is on the impact on probiotics. For the first item, we find that clove and clostridium butyricum have no interactions — so taking both on the same day is fine.

Similarly, for fennel we find that it actually enhances lactobacillus reuteri

So there is a manual process to identify what is neutral or helpful. If a herb or spice impacts every suggested probiotic, then either just do the herb, or keep 8-12 hours between them.

Small Intestinal Bacterial Overgrowth: Treatment Suggestions

A recent study identifies which bacteria are involved: Defining Small Intestinal Bacterial Overgrowth by Culture and High Throughput Sequencing [2023].

At a high level, Small Intestinal Bacterial Overgrowth (SIBO) appears to have low levels of Streptococcus and Rothia.

SIBO is accounted for primarily by 2 E coli strains and 2 Klebsiella species. This remarkably specific group of microbes account for 40.24% of duodenal bacteria in SIBO subjects, compared with 5.6% in non-SIBO subjects.

Using Microbiome Prescription expert system with these 4 pieces of information, we can get some suggestions on how to shift the bacteria.

Including antibiotics into the scope, we have this list

My own preference for non-antibiotic treatment would be:

Of special note is mutaflor escherichia coli nissle 1917 (probiotics) which to some may appear to be a contradiction to the results. It is not, this is a beneficial probiotic that is aggressive in pushing out bad E.Coli strains.

I would do only one at time for one week each — because a “herx” type reaction (temporary worsening of symptoms) may happen.

NOTE: Probiotics in capsules should not be used. The capsules may not dissolve until after the targeted area. Custom Probiotics sells powders of many of these probiotics with instruction to dissolve in a glass of water and then consumed. That process is likely to produce the best results.

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 can compute items to take, those computations do not provide information on rotations etc.

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.

Technical Note: Metabolite estimates from the Microbiome

A colleague gave me a list of bacteria producing different metabolites according to studies. The question arise – how accurate are making estimates. I am going to focus on one of them: Methane. The reason is simple that the microbiome data set that I have access to has self-reporting of SIBO which typically is an excess of methane.

I intend to do a three way analysis:

  • Using the list of well documented bacteria he provided
  • Using data from KEGG: Kyoto Encyclopedia of Genes and Genomes
  • Using data from self-reporting.

This is a rough, on a paper napkin, analysis to explore this issue.

The methane list from studies is very short:

  • Methanobrevibacter smithii
  • Methanosphaera stadtmanae

From KEGG, we use C01438 (CH4) and have a list of 622 taxa capable of producing it. A few examples are:

  • Serratia sp. AS12
  • Serratia sp. AS13
  • Sinorhizobium sp. CCBAU 05631
  • Bradyrhizobium arachidis
  • Cytobacillus kochii
  • Cupriavidus sp. USMAA2-4
  • Halarcobacter anaerophilus

We have 88 annotated samples with SIBO with a total population of 2461 samples. In the table below, units are cells out of one million detected.

MethodAverageStd DevIncidence
Studies1378441624% has some
KEGG34321026498% has some
Studies with SIBO709175329% has some
KEGG with SIBO69013664998% has some

The obvious conclusion is that KEGG is definitely superior with the count of bacteria doubling for SIBO samples while the studies approach resulted in the count count of bacteria being halved. Incidence of detection was unchanged KEGG and we notice an increase with studies, but only 29% of people with SIBO will have any methane estimated.

A second gas for SIBO is hydrogen Sulfide (C00283 H2S). Applying the same process.

MethodAverageStd DevIncidence
Studies3635553392% has some
KEGG253720155882100% has some
Studies with SIBO3689446189% has some
KEGG with SIBO289389186070100% has some

The results are not as dramatic as with methane. There was no change with Studies and a 14% increase in count using KEGG. The incidence rate went down slightly with studies.

Bottom Line

This drill down suggests that I made the right decision to deprecate the computations of metabolites using study data and shifted to using KEGG data.

The questions raised by this napkin computation is that the above process should be done with actual measurement of methane and hydrogen sulfide in samples to definitely identify the better process.

This is one of a continuing sequence of ad hoc analysis trying to raise questions about current process. See Technical Notes on Microbiome Analysis.

The microbiome data is available at https://citizenscience.microbiomeprescription.com/ . The Lab Source used for this post was “Biomesight”.

Verify Before Buying – $$$ over Science is the norm

In the last 24 hours I saw/got two similar messages:

Has anyone heard of Tim spectrum who works in the uk, a scientist study’s the microbiom currently offering the Zoe app. Was thinking of trying this to see if he can help my blasted gut issues. Plus his based in the uk we’re I’m from as has study in a uk hospital kings college. And wondering if maybe just maybe my own gps might be able to jump on board and help me a little more 🤷‍♀️. Paying for all these tests? Doing all these protocols? Paying all these naturel drs? Loosing a heel of a lot of weight in bank account? Looking ill? Diet after diets. And still friggin unwell 😡. Absolutely sick to death of the whole thing 😢. Anyone else out there feeling the same

Facebook

And from a direct email:

Tomorrow I have an appointment with a Gastroenterologist and had intended to share excerpts from my XXXX test and from my upload of the same to MicrobiomePrescription.com.  However, over the last few days I’ve spent a significant amount of time analyzing and comparing the two reports/data, and there’s such a discrepancy between them and their respective “Take/Don’t Take” suggestions that I don’t feel comfortable sharing the data from either report with the doctor.  

First, I want to make sure you know that I am well aware that XXXX and MicrobiomePrescription are never going to ‘match’, nor do I expect them to.  However, the data is so contradictory that I’m losing trust with it. 

Are you willing to look into these contradictions?  

From Email

Response

Yes, I have compared. Microbiome Prescript provides the full evidence trail for every single suggestion.
See https://blog.microbiomeprescription.com/2024/01/24/checking-suggestions-are-reasonable/ on how to do it.

XXXX does not provide this– often many sites references are pathetic, missing or based on a dietician’s / naturopath’s personal experience. I favor data from a clinical study with 100 people over what worked for 1 person.

Example from one site that I have access to. I have seen the same on other sites.

So we have advice without any evidence being provided.

Other sites, push their high profit margin products.

They provide bulk citations but nothing on which of the 9 overgrown pathogenic bacteria each will impact.

Their support people will reply per script… “It is well studied, look at all of the studies…”

MicrobiomePrescription would suggest an increase [opposite!].. and give links to the studies

And we provide links to the actual article on line (when possible). Not just the name of the study.
We also identify exactly what will be impacted and how.

One would likely be dismissed by your Gastroenterologist, the other — because of the full evidence trail, would be considered

You need to ask why they do not provide the same!!

MicrobiomePrescription was created by one person working in spare-time (full time work and supporting family). The other sites are for profit with paid employees. Often, venture capitals care not about quality or completeness — just sales. Hire 10 more marketing people instead of a caring scientist/researcher. I refer to this as “thirty pieces of silver” science.

Checking Suggestions Are Reasonable

See also Verify Before Buying – $$$ over Science is the norm

A reader messaged me because Hesperidin (polyphenol) was the top of his list and several friends. It was there also for me! It was up with antibiotics!

For all suggestions, there is the magic evidence button, 📚. Clicking it, I see 219 citations!! Priority is based on the number of citations.

The literature cites 74 different bacteria that it impacts. Since we infer a reduced impact to the parent and children, we end up with 2,300 bacteria influenced by it.

I double checked the database that were was not a typo and if it’s impact was not entered more than normal. It was not (I have checks in the database to prevent those typos, and they appeared to have work).

So WHY is it so common?

The reason is very simple, we have more information on what it impacts. We have 74 different bacteria. If we go to others, we see much fewer bacteria:

  • Tulsi 17
  • Olive Leaf 22
  • magnolia bark 2

The priority is determined by how many bacteria it influences in a desired way x number of studies for each bacteria x number of each bacteria desired to be shifted. For example, if it takes just 100 to shift a bacteria to normal for Hesperidin, and a different bacteria needs 1000, the priority will be higher when they are more unless there are more studies showing the first bacteria is shifted (but not the second).

We use the term priority — and could use confidence, but confidence has too many different meanings in common speech.

Technical Note: Percentile versus Percentage

The use of percentile when you have a very non-normal distribution does an elegant transformation of the data to a continuous uniform distribution. Our earlier note was based on statistical differences from the mean of the percentages; I repeated the process but used the mean of the percentiles.

One should be aware that for a specific bacteria, the mean(percentage) may have less then mean(percentile) being significant for some bacteria; while the mean(percentile) may have more than mean(percentile) being significant for other bacteria. In short, directionality is not preserved by the transformation to percentile. This is rarely the case with a normal distribution but does happen with microbiome data. It is a worthwhile exercise to understand this behavior because it is at odds with “common sense” but very true mathematically. Familiarity with the Cauchy distribution may help with the mind shift.

Bottom Line Summary

Using the percentile is slightly superior for prediction. Remember that 16% is the percentage expected from a random predictor. Remember by match, we means how often we get matches to predicted

MethodAverage Correct Prediction MatchWinner on a SymptomAverage
Taxons
Mean(Percentile)23.5%161126
Mean(Percentage)22.9%9697

The details by symptoms is below.

Symptom NamePercentile
Match
Mean
Match
Comorbid: Inflammatory bowel disease26.6925.37
Infection: Lyme26.3926.26
DePaul University Fatigue Questionnaire : Muscle Pain (i.e., sensations of pain or aching in your muscles. This does not include weakness or pain in other areas such as joints)26.3721.69
DePaul University Fatigue Questionnaire : Easily irritated26.3021.03
Neurological-Vision: Blurred Vision26.2525.09
DePaul University Fatigue Questionnaire : Tense muscles26.0526.27
Neurological: Difficulty reading25.9823.59
DePaul University Fatigue Questionnaire : Weight change25.8525.79
Immune Manifestations: Hair loss25.7622.25
DePaul University Fatigue Questionnaire : Tingling feeling25.7524.20
Post-exertional malaise: Next-day soreness after everyday activities25.7423.13
Neurological-Vision: inability to focus eye/vision25.7422.38
DePaul University Fatigue Questionnaire : Muscle weakness25.6622.68
Comorbid: Mold Sensitivity / Exposure25.6226.26
Immune: Sensitivity to smell/food/medication/chemicals25.6221.61
Neuroendocrine Manifestations: intolerance of extremes of heat and cold25.5621.52
General: Heavy feeling in arms and legs25.5323.32
DePaul University Fatigue Questionnaire : Blurred Vision25.5322.49
DePaul University Fatigue Questionnaire : Difficulty comprehending Information25.5022.24
General: Myalgia (pain)25.4924.54
DePaul University Fatigue Questionnaire : Pain in Multiple Joints without Swelling or Redness25.4422.90
DePaul University Fatigue Questionnaire : New trouble with math25.4425.87
Neurological: Executive Decision Making (Difficulty making)25.4023.39
DePaul University Fatigue Questionnaire : Chilled or shivery25.3825.74
Neurological-Sleep: Inability for deep (delta) sleep25.3223.24
Neurological: Difficulty processing information (Understanding)25.2923.57
Post-exertional malaise: Rapid muscular fatigability,25.2821.44
Other: Sensitivity to mold25.2624.17
Comorbid: Small intestinal bacterial overgrowth (SIBO)25.2520.96
DePaul University Fatigue Questionnaire : Difficulty falling asleep25.1721.08
Pain: Joint pain25.1723.25
Immune Manifestations: Inflammation of skin, eyes or joints25.1423.55
DePaul University Fatigue Questionnaire : Difficulty following things25.1322.84
Virus: Epstein-Barr virus25.0923.30
DePaul University Fatigue Questionnaire : Temperature lower than normal25.0722.82
Immune Manifestations: Chronic Flatus / Flatulence / gas25.0021.39
Post-exertional malaise: Mentally tired after the slightest effort24.9322.40
DePaul University Fatigue Questionnaire : Sensitivity to Alcohol24.8622.52
Neurological: Dysautonomia24.8322.95
Neuroendocrine Manifestations: Muscle weakness24.8022.64
Neurocognitive: Difficulty expressing thoughts24.7520.27
Onset: 2000-201024.7221.89
DePaul University Fatigue Questionnaire : Upset stomach24.7024.95
Immune Manifestations: Inflammation (General)24.6021.97
Comorbid-Mouth: Bruxism – Jaw cleanching / Teeth grinding24.5921.65
DePaul University Fatigue Questionnaire : Chemical sensitivity24.5825.19
DePaul University Fatigue Questionnaire : Difficulty reasoning things out24.5722.94
DePaul University Fatigue Questionnaire : Confusion/disorientation24.5625.87
DePaul University Fatigue Questionnaire : Frequently loose train of thought24.5523.09
Post-exertional malaise: Difficulty reading after mild physical or mental activity24.5420.25
DePaul University Fatigue Questionnaire : Trouble expressing thoughts24.5223.70
DePaul University Fatigue Questionnaire : Shortness of breath24.4922.88
DePaul University Fatigue Questionnaire : Abnormal sensitivity to light24.4524.32
Post-exertional malaise: Physically tired after minimum exercise24.4421.70
Official Diagnosis: Chronic Fatigue Syndrome (CFS/ME)24.4420.20
Neurological-Sleep: Sleep Apnea24.4330.42
Neurocognitive: Absent-mindedness or forgetfulness24.4221.07
Neuroendocrine Manifestations: Poor gut motility24.4220.04
DePaul University Fatigue Questionnaire : Slowness of thought24.4123.01
Gender: Female24.4120.35
Post-exertional malaise: Rapid cognitive fatigability,24.4021.05
Neurological: Cognitive/Sensory Overload24.3922.84
Post-exertional malaise: Inappropriate loss of physical and mental stamina,24.3920.33
Sleep: Problems falling asleep24.3719.75
DePaul University Fatigue Questionnaire : Eye pain24.3522.92
DePaul University Fatigue Questionnaire : Unrefreshing Sleep, that is waking up feeling tired24.3320.49
Neurocognitive: Unable to focus vision and/or attention24.3224.34
Immune Manifestations: Mucus in the stool24.3223.08
Immune Manifestations: Constipation24.3219.42
Physical: Work-Sitting24.3120.96
DePaul University Fatigue Questionnaire : Mood swings24.3022.58
Neurological-Sleep: Insomnia24.2720.91
Post-exertional malaise: Muscle fatigue after mild physical activity24.2621.75
DePaul University Fatigue Questionnaire : Ringing in the Ears24.2522.34
Immune Manifestations: new food sensitivities24.2521.28
Neuroendocrine Manifestations: cold extremities24.2419.68
Comorbid-Mouth: Dry Mouth24.2424.13
Neurocognitive: Feeling disoriented24.2424.51
Neuroendocrine: Alcohol intolerance24.2420.91
DePaul University Fatigue Questionnaire : Does physical activity make you feel worse24.2421.37
DePaul University Fatigue Questionnaire : Difficulty finding the right word24.2320.46
Neurological: Neuropathy24.2024.34
Comorbid: Migraine24.2024.54
Neurological: emotional overload24.2024.17
Age: 40-5024.2018.92
Immune Manifestations: Abdominal Pain24.1921.59
Neuroendocrine Manifestations: Rapid muscular fatiguability24.1322.24
Post-exertional malaise: Physically drained or sick after mild activity24.0622.15
Physical: Amalgam fillings24.0622.43
Neuroendocrine Manifestations: marked weight change24.0524.83
Pain: Pain or aching in muscles24.0521.54
Autonomic Manifestations: Orthostatic intolerance24.0423.20
Neuroendocrine: Lost or gained weight without trying24.0222.19
Neurological: Impairment of concentration24.0121.29
Neuroendocrine: Feeling hot or cold for no reason24.0022.53
Onset: Sudden24.0021.03
DePaul University Fatigue Questionnaire : Absent-mindedness23.9923.34
Autonomic: Shortness of breath23.9624.04
Sleep: Unrefreshed sleep23.9618.84
Neurological: Short-term memory issues23.9620.71
Autonomic Manifestations: irritable bowel syndrome23.9422.18
Physical: Steps Per Day 4000-800023.9321.26
Autonomic Manifestations: light-headedness23.8923.75
Physical: Steps Per Day 2000-400023.8922.21
Physical: Good Air Quality23.8924.27
Autonomic Manifestations: urinary frequency dysfunction23.8925.32
DePaul University Fatigue Questionnaire : Need to have to focus on one thing at a time23.8922.37
Official Diagnosis: Attention deficit hyperactivity disorder (ADHD)23.8825.24
Neurological-Audio: hypersensitivity to noise23.8822.04
Post-exertional malaise: General23.8720.19
Post-exertional malaise: Post-exertional malaise23.8621.48
DePaul University Fatigue Questionnaire : Difficulty staying asleep23.8322.37
Neuroendocrine Manifestations: Dry Eye (Sicca or Sjogren Syndrome)23.8221.35
DePaul University Fatigue Questionnaire : Impaired Memory & concentration23.8122.76
DePaul University Fatigue Questionnaire : Fatigue23.8121.21
Neurological-Vision: photophobia (Light Sensitivity)23.8125.02
Comorbid: Restless Leg23.8025.29
General: Fatigue23.7718.39
Neurocognitive: Brain Fog23.7519.88
Comorbid: Multiple Chemical Sensitivity23.7523.15
DePaul University Fatigue Questionnaire : Difficulty recalling information23.7521.10
Immune Manifestations: medication sensitivities.23.7521.01
Comorbid: Histamine or Mast Cell issues23.7420.41
Condition: Acne23.7421.63
Neurocognitive: Difficulty understanding things23.7320.84
Autonomic Manifestations: Postural orthostatic tachycardia syndrome (POTS)23.7322.83
Pain: Sensitivity to pain23.7226.02
Joint: Tenderness23.7224.26
Other: Sensitivity to vibrations23.6825.97
DePaul University Fatigue Questionnaire : Frequently get words or numbers in the wrong order23.6726.05
Neuroendocrine: Cold limbs (e.g. arms, legs hands)23.6721.42
Post-exertional malaise: Worsening of symptoms after mild mental activity23.6722.24
Immune Manifestations: Bloating23.6620.51
General: Headaches23.6622.25
DePaul University Fatigue Questionnaire : Difficulty retaining information23.6323.04
Autonomic: Heart rate increase after standing23.6020.51
Post-exertional malaise: Worsening of symptoms after mild physical activity23.5821.27
DePaul University Fatigue Questionnaire : Forgetting what you are trying to say23.5622.10
DePaul University Fatigue Questionnaire : Post-exertional malaise, feeling worse after doing activities that require either physical or mental exertion23.5620.52
Neuroendocrine Manifestations: worsening of symptoms with stress.23.5419.94
Condition: ME/CFS with IBS23.5321.15
Comorbid: Constipation and Diarrohea (not explosions)23.5121.70
Neurocognitive: Slowness of thought23.5121.35
Condition: Post-Traumatic Stress Disorder23.4927.09
Comorbid-Mouth: TMJ / Dysfunction of the temporomandibular joint syndrome23.4822.93
Autonomic: Dizziness or fainting23.4725.31
Age: 30-4023.4622.59
DePaul University Fatigue Questionnaire : Slow to react23.4423.99
DePaul University Fatigue Questionnaire : Concern with driving23.4325.82
Immune Manifestations: recurrent flu-like symptoms23.4322.86
Comorbid: Sleep Apnea Diagnosis23.4127.83
Neurological-Audio: Tinnitus (ringing in ear)23.4120.98
Autonomic Manifestations: palpitations23.4120.80
Immune Manifestations: Thick blood / Hypercoagulation23.3825.82
Neurocognitive: Problems remembering things23.3521.13
DePaul University Fatigue Questionnaire : Dizziness23.3524.74
Immune Manifestations: general malaise23.3319.84
Sleep: Problems staying asleep23.3320.03
Physical: Long term (chronic) stress23.3022.22
Immune Manifestations: tender lymph nodes23.2824.97
Sleep: Daytime drowsiness23.2721.07
DePaul University Fatigue Questionnaire : Abdomen pain23.2623.29
Neurocognitive: Can only focus on one thing at a time23.2521.20
Pain: Aching of the eyes or behind the eyes23.2324.86
DePaul University Fatigue Questionnaire : Depression23.2025.30
DePaul University Fatigue Questionnaire : Anxiety/tension23.1721.78
Immune Manifestations: Diarrhea23.1722.26
Neurocognitive: Difficulty paying attention for a long period of time23.1519.57
Official Diagnosis: Fibromyalgia23.1125.73
Physical: Breastfed23.1022.23
Official Diagnosis: Autism23.0922.72
Official Diagnosis: Irritable Bowel Syndrome23.0719.64
General: Anhedonia (inability to feel pleasure)23.0625.13
Age: 60-7023.0625.48
Neurological: High degree of Empathy before onset23.0325.21
Blood Type: O Positive23.0122.58
Physical: Steps Per Day < 200023.0021.24
Condition: ME/CFS without IBS22.9921.23
DePaul University Fatigue Questionnaire : Headaches22.9922.21
Onset: Gradual22.9320.90
Immune Manifestations: Alcohol Intolerant22.9321.25
DePaul University Fatigue Questionnaire : Nausea22.9325.28
Immune: Viral infections with prolonged recovery periods22.9223.79
Neurological: Word-finding problems22.9121.30
DePaul University Fatigue Questionnaire : Allergies22.9121.39
Neuroendocrine Manifestations: Air Hunger22.9023.25
Autonomic Manifestations: Cortisol disorders or irregularity22.8726.22
Official Diagnosis: Allergic Rhinitis (Hay Fever)22.8520.06
Comorbid: Methylation issues (MTHFR)22.8524.23
Official Diagnosis: Gastroesophageal reflux disease (GERD)22.7624.27
Joint: Stiffness and swelling22.7525.95
General: Depression22.7322.15
Official Diagnosis: Mast Cell Dysfunction22.7123.61
Gender: Male22.7118.29
Age: 50-6022.6621.94
Autonomic: Inability to tolerate an upright position22.6325.39
DePaul University Fatigue Questionnaire : Racing heart22.5924.64
Condition: Non-Celiac Gluten Sensitivity22.5923.05
Comorbid: High Anxiety22.5622.02
DePaul University Fatigue Questionnaire : Hot or Cold spells22.4922.72
Sleep: Waking up early in the morning (e.g. 3 AM)22.4521.76
Physical: Northern European22.4421.58
Onset: less than 04 years since onset22.4322.47
Immune: Recurrent Sore throat22.4322.38
Official Diagnosis: COVID19 (Long Hauler)22.4120.18
General: Sinus issues with headaches22.4121.48
Blood Type: A Positive22.3821.61
DePaul University Fatigue Questionnaire : Sore Throat22.3725.17
DePaul University Fatigue Questionnaire : Walking up early in the morning (e.g. 3AM)22.3721.03
Immune: Tender / sore lymph nodes22.3724.62
DePaul University Fatigue Questionnaire : Need to nap during each day22.3721.23
Age: 20-3022.2719.37
DePaul University Fatigue Questionnaire : Feel unsteady on feet22.2623.61
Autonomic: Irregular heartbeats22.2523.87
Onset: 2010-202022.2520.01
Physical: Tonsils removed22.2224.24
Autonomic: Nausea22.1722.59
Onset: less than 32 years since onset22.1526.14
Official Diagnosis: Autoimmune Disease22.1523.09
Physical: Pets22.1422.14
Condition: Generalized anxiety disorder22.1327.21
Comorbid: Mood Swings22.1325.38
DePaul University Fatigue Questionnaire : Feeling like you have a temperature22.0925.22
Comorbid: Hypothyroidism22.0722.74
Neurological-Sleep: Chaotic diurnal sleep rhythms (Erratic Sleep)22.0325.54
Autonomic: Ocassional Tachycardia (Rapid heart beat)22.0222.86
Comorbid: Fibromyalgia22.0124.58
Immune: Chronic Sinusitis21.9522.83
Official Diagnosis: Hypercholesterolemia (High Cholesterol)21.9428.51
Sleep: Need to nap daily21.9222.57
Neurological: Joint hypermobility21.8822.12
Autonomic Manifestations: exertional dyspnea21.7926.96
Pain: Myofascial pain21.7525.77
Autonomic Manifestations: nausea21.7122.62
Neurological-Sleep: Night Sweats21.7026.96
Immune: Flu-like symptoms21.6621.85
Physical: Organic Diet21.6223.80
Neuroendocrine: Temperature fluctuations throughout the day21.6025.29
Neurological: Myoclonic jerks or seizures21.4922.89
Neuroendocrine Manifestations: subnormal body temperature21.4324.68
DePaul University Fatigue Questionnaire : Night sweats21.3327.05
Neurological-Sleep: Vivid Dreams/Nightmares21.3126.39
Neuroendocrine Manifestations: sweating episodes20.9923.42
Neurological: Confusion20.9124.86
Comorbid-Mouth: Gingivits / Gum Disease20.8327.31
Neuroendocrine: Feeling like you have a high temperature20.8125.65
Autonomic Manifestations: bladder dysfunction20.5925.96
Onset: less than 02 years since onset20.5323.60
Onset: less than 16 years since onset20.4121.35
Neuroendocrine Manifestations: Painful menstrual periods20.2122.90
DePaul University Fatigue Questionnaire : Rash20.1223.90
Neuroendocrine Manifestations: Paraesthesia (tingling burning of skin)19.7522.42
Official Diagnosis: Depression19.5224.34
Physical: Eastern European19.4221.21
Neurological: Disorientation18.8427.99
Neuroendocrine Manifestations: Excessive adrenaline18.1625.52
Neurological: Seasonal Affective Disorder (SAD)16.8927.39

Looking at the bacteria taxons identified by each, we also see difference

Symptom NamePercentile TaxonsMean Taxons
Age: 20-30131100
Age: 30-4024561
Age: 40-50202138
Age: 50-6011291
Age: 60-7045124
Autonomic Manifestations: bladder dysfunction21125
Autonomic Manifestations: Cortisol disorders or irregularity51126
Autonomic Manifestations: exertional dyspnea39113
Autonomic Manifestations: irritable bowel syndrome19594
Autonomic Manifestations: light-headedness110121
Autonomic Manifestations: nausea99105
Autonomic Manifestations: Orthostatic intolerance126128
Autonomic Manifestations: palpitations155122
Autonomic Manifestations: Postural orthostatic tachycardia syndrome (POTS)139145
Autonomic Manifestations: urinary frequency dysfunction9897
Autonomic: Dizziness or fainting93132
Autonomic: Heart rate increase after standing175155
Autonomic: Inability to tolerate an upright position68115
Autonomic: Irregular heartbeats63114
Autonomic: Nausea7391
Autonomic: Ocassional Tachycardia (Rapid heart beat)134100
Autonomic: Shortness of breath155107
Blood Type: A Positive9397
Blood Type: O Positive111106
Comorbid-Mouth: Bruxism – Jaw cleanching / Teeth grinding16597
Comorbid-Mouth: Dry Mouth132121
Comorbid-Mouth: Gingivits / Gum Disease27105
Comorbid-Mouth: TMJ / Dysfunction of the temporomandibular joint syndrome71106
Comorbid: Constipation and Diarrohea (not explosions)11993
Comorbid: Fibromyalgia8080
Comorbid: High Anxiety16797
Comorbid: Histamine or Mast Cell issues22682
Comorbid: Hypothyroidism116103
Comorbid: Inflammatory bowel disease8683
Comorbid: Methylation issues (MTHFR)10699
Comorbid: Migraine9398
Comorbid: Mold Sensitivity / Exposure11479
Comorbid: Mood Swings12372
Comorbid: Multiple Chemical Sensitivity8568
Comorbid: Restless Leg10077
Comorbid: Sleep Apnea Diagnosis69114
Comorbid: Small intestinal bacterial overgrowth (SIBO)149100
Condition: Acne12875
Condition: Generalized anxiety disorder24114
Condition: ME/CFS with IBS205100
Condition: ME/CFS without IBS16187
Condition: Non-Celiac Gluten Sensitivity108103
Condition: Post-Traumatic Stress Disorder8480
DePaul University Fatigue Questionnaire : Abdomen pain10484
DePaul University Fatigue Questionnaire : Abnormal sensitivity to light138128
DePaul University Fatigue Questionnaire : Absent-mindedness15696
DePaul University Fatigue Questionnaire : Allergies15999
DePaul University Fatigue Questionnaire : Anxiety/tension174113
DePaul University Fatigue Questionnaire : Blurred Vision11496
DePaul University Fatigue Questionnaire : Chemical sensitivity8376
DePaul University Fatigue Questionnaire : Chilled or shivery69104
DePaul University Fatigue Questionnaire : Concern with driving7191
DePaul University Fatigue Questionnaire : Confusion/disorientation10284
DePaul University Fatigue Questionnaire : Depression12390
DePaul University Fatigue Questionnaire : Difficulty comprehending Information17387
DePaul University Fatigue Questionnaire : Difficulty falling asleep15281
DePaul University Fatigue Questionnaire : Difficulty finding the right word20595
DePaul University Fatigue Questionnaire : Difficulty following things131116
DePaul University Fatigue Questionnaire : Difficulty reasoning things out123102
DePaul University Fatigue Questionnaire : Difficulty recalling information18293
DePaul University Fatigue Questionnaire : Difficulty retaining information15096
DePaul University Fatigue Questionnaire : Difficulty staying asleep172128
DePaul University Fatigue Questionnaire : Dizziness102109
DePaul University Fatigue Questionnaire : Does physical activity make you feel worse20199
DePaul University Fatigue Questionnaire : Easily irritated18871
DePaul University Fatigue Questionnaire : Eye pain80113
DePaul University Fatigue Questionnaire : Fatigue24884
DePaul University Fatigue Questionnaire : Feel unsteady on feet31111
DePaul University Fatigue Questionnaire : Feeling like you have a temperature4492
DePaul University Fatigue Questionnaire : Forgetting what you are trying to say16983
DePaul University Fatigue Questionnaire : Frequently get words or numbers in the wrong order67108
DePaul University Fatigue Questionnaire : Frequently loose train of thought14185
DePaul University Fatigue Questionnaire : Headaches116101
DePaul University Fatigue Questionnaire : Hot or Cold spells11294
DePaul University Fatigue Questionnaire : Impaired Memory & concentration20487
DePaul University Fatigue Questionnaire : Mood swings9885
DePaul University Fatigue Questionnaire : Muscle Pain (i.e., sensations of pain or aching in your muscles. This does not include weakness or pain in other areas such as joints)16180
DePaul University Fatigue Questionnaire : Muscle weakness17699
DePaul University Fatigue Questionnaire : Nausea83114
DePaul University Fatigue Questionnaire : Need to have to focus on one thing at a time17877
DePaul University Fatigue Questionnaire : Need to nap during each day110109
DePaul University Fatigue Questionnaire : New trouble with math1786
DePaul University Fatigue Questionnaire : Night sweats59121
DePaul University Fatigue Questionnaire : Pain in Multiple Joints without Swelling or Redness10891
DePaul University Fatigue Questionnaire : Post-exertional malaise, feeling worse after doing activities that require either physical or mental exertion21780
DePaul University Fatigue Questionnaire : Racing heart109102
DePaul University Fatigue Questionnaire : Rash4368
DePaul University Fatigue Questionnaire : Ringing in the Ears186105
DePaul University Fatigue Questionnaire : Sensitivity to Alcohol117104
DePaul University Fatigue Questionnaire : Shortness of breath109100
DePaul University Fatigue Questionnaire : Slow to react11494
DePaul University Fatigue Questionnaire : Slowness of thought17095
DePaul University Fatigue Questionnaire : Sore Throat8293
DePaul University Fatigue Questionnaire : Temperature lower than normal79112
DePaul University Fatigue Questionnaire : Tense muscles12993
DePaul University Fatigue Questionnaire : Tingling feeling12794
DePaul University Fatigue Questionnaire : Trouble expressing thoughts128101
DePaul University Fatigue Questionnaire : Unrefreshing Sleep, that is waking up feeling tired23366
DePaul University Fatigue Questionnaire : Upset stomach12190
DePaul University Fatigue Questionnaire : Walking up early in the morning (e.g. 3AM)13094
DePaul University Fatigue Questionnaire : Weight change9685
Gender: Female250100
Gender: Male26781
General: Anhedonia (inability to feel pleasure)40112
General: Depression148116
General: Fatigue29963
General: Headaches15182
General: Heavy feeling in arms and legs14987
General: Myalgia (pain)12997
General: Sinus issues with headaches7286
Immune Manifestations: Abdominal Pain15990
Immune Manifestations: Alcohol Intolerant13896
Immune Manifestations: Bloating25484
Immune Manifestations: Chronic Flatus / Flatulence / gas144113
Immune Manifestations: Constipation21891
Immune Manifestations: Diarrhea13382
Immune Manifestations: general malaise206117
Immune Manifestations: Hair loss14990
Immune Manifestations: Inflammation (General)18689
Immune Manifestations: Inflammation of skin, eyes or joints150106
Immune Manifestations: medication sensitivities.78101
Immune Manifestations: Mucus in the stool10188
Immune Manifestations: new food sensitivities13194
Immune Manifestations: recurrent flu-like symptoms102119
Immune Manifestations: tender lymph nodes80138
Immune Manifestations: Thick blood / Hypercoagulation44114
Immune: Chronic Sinusitis9391
Immune: Flu-like symptoms8899
Immune: Recurrent Sore throat11898
Immune: Sensitivity to smell/food/medication/chemicals14979
Immune: Tender / sore lymph nodes61138
Immune: Viral infections with prolonged recovery periods76139
Infection: Lyme57126
Joint: Stiffness and swelling71117
Joint: Tenderness7394
Neurocognitive: Absent-mindedness or forgetfulness19585
Neurocognitive: Brain Fog30160
Neurocognitive: Can only focus on one thing at a time21866
Neurocognitive: Difficulty expressing thoughts18467
Neurocognitive: Difficulty paying attention for a long period of time23071
Neurocognitive: Difficulty understanding things17177
Neurocognitive: Feeling disoriented12786
Neurocognitive: Problems remembering things21394
Neurocognitive: Slowness of thought19684
Neurocognitive: Unable to focus vision and/or attention168108
Neuroendocrine Manifestations: Air Hunger11093
Neuroendocrine Manifestations: cold extremities19181
Neuroendocrine Manifestations: Dry Eye (Sicca or Sjogren Syndrome)129110
Neuroendocrine Manifestations: Excessive adrenaline3390
Neuroendocrine Manifestations: intolerance of extremes of heat and cold20257
Neuroendocrine Manifestations: marked weight change51113
Neuroendocrine Manifestations: Muscle weakness142123
Neuroendocrine Manifestations: Painful menstrual periods2781
Neuroendocrine Manifestations: Paraesthesia (tingling burning of skin)45112
Neuroendocrine Manifestations: Poor gut motility19891
Neuroendocrine Manifestations: Rapid muscular fatiguability142105
Neuroendocrine Manifestations: subnormal body temperature51145
Neuroendocrine Manifestations: sweating episodes81120
Neuroendocrine Manifestations: worsening of symptoms with stress.23586
Neuroendocrine: Alcohol intolerance12991
Neuroendocrine: Cold limbs (e.g. arms, legs hands)16684
Neuroendocrine: Feeling hot or cold for no reason13882
Neuroendocrine: Feeling like you have a high temperature2287
Neuroendocrine: Lost or gained weight without trying11696
Neuroendocrine: Temperature fluctuations throughout the day3779
Neurological-Audio: hypersensitivity to noise20385
Neurological-Audio: Tinnitus (ringing in ear)227115
Neurological-Sleep: Chaotic diurnal sleep rhythms (Erratic Sleep)63122
Neurological-Sleep: Inability for deep (delta) sleep12285
Neurological-Sleep: Insomnia19198
Neurological-Sleep: Night Sweats86106
Neurological-Sleep: Sleep Apnea68115
Neurological-Sleep: Vivid Dreams/Nightmares73107
Neurological-Vision: Blurred Vision12383
Neurological-Vision: inability to focus eye/vision93105
Neurological-Vision: photophobia (Light Sensitivity)128101
Neurological: Cognitive/Sensory Overload17280
Neurological: Confusion6372
Neurological: Difficulty processing information (Understanding)15691
Neurological: Difficulty reading13086
Neurological: Disorientation4190
Neurological: Dysautonomia151117
Neurological: emotional overload13282
Neurological: Executive Decision Making (Difficulty making)13976
Neurological: High degree of Empathy before onset6878
Neurological: Impairment of concentration18288
Neurological: Joint hypermobility6266
Neurological: Myoclonic jerks or seizures20100
Neurological: Neuropathy6796
Neurological: Seasonal Affective Disorder (SAD)1688
Neurological: Short-term memory issues170101
Neurological: Word-finding problems19380
Official Diagnosis: Allergic Rhinitis (Hay Fever)11862
Official Diagnosis: Attention deficit hyperactivity disorder (ADHD)73118
Official Diagnosis: Autism112115
Official Diagnosis: Autoimmune Disease76119
Official Diagnosis: Chronic Fatigue Syndrome (CFS/ME)263136
Official Diagnosis: COVID19 (Long Hauler)249150
Official Diagnosis: Depression56137
Official Diagnosis: Fibromyalgia48103
Official Diagnosis: Gastroesophageal reflux disease (GERD)8297
Official Diagnosis: Hypercholesterolemia (High Cholesterol)23104
Official Diagnosis: Irritable Bowel Syndrome17396
Official Diagnosis: Mast Cell Dysfunction59108
Onset: 2000-20109699
Onset: 2010-2020154106
Onset: Gradual10889
Onset: less than 02 years since onset66120
Onset: less than 04 years since onset8482
Onset: less than 16 years since onset5792
Onset: less than 32 years since onset50108
Onset: Sudden11886
Other: Sensitivity to mold10982
Other: Sensitivity to vibrations28114
Pain: Aching of the eyes or behind the eyes9194
Pain: Joint pain14094
Pain: Myofascial pain5275
Pain: Pain or aching in muscles14598
Pain: Sensitivity to pain80106
Physical: Amalgam fillings98133
Physical: Breastfed112100
Physical: Eastern European3994
Physical: Good Air Quality48111
Physical: Long term (chronic) stress167150
Physical: Northern European184120
Physical: Organic Diet2892
Physical: Pets12481
Physical: Steps Per Day < 2000133115
Physical: Steps Per Day 2000-4000117111
Physical: Steps Per Day 4000-8000102107
Physical: Tonsils removed72122
Physical: Work-Sitting18379
Post-exertional malaise: Difficulty reading after mild physical or mental activity15895
Post-exertional malaise: General19782
Post-exertional malaise: Inappropriate loss of physical and mental stamina,18190
Post-exertional malaise: Mentally tired after the slightest effort14479
Post-exertional malaise: Muscle fatigue after mild physical activity17690
Post-exertional malaise: Next-day soreness after everyday activities14090
Post-exertional malaise: Physically drained or sick after mild activity17389
Post-exertional malaise: Physically tired after minimum exercise19380
Post-exertional malaise: Post-exertional malaise19893
Post-exertional malaise: Rapid cognitive fatigability,15886
Post-exertional malaise: Rapid muscular fatigability,146105
Post-exertional malaise: Worsening of symptoms after mild mental activity15568
Post-exertional malaise: Worsening of symptoms after mild physical activity215100
Sleep: Daytime drowsiness17571
Sleep: Need to nap daily10588
Sleep: Problems falling asleep18193
Sleep: Problems staying asleep21073
Sleep: Unrefreshed sleep27662
Sleep: Waking up early in the morning (e.g. 3 AM)17289
Virus: Epstein-Barr virus12389

Spot checking a few, we find that more bacteria to filter by seems to result in a higher percentage of matches. Consider Females:

  • Measure: Using Percentile \ Using Mean
  • Taxons: Gender: Female 250 \ 100
  • Matches: Gender: Female 24.41% \ 20.35%

Bottom Line

The purpose of this post is to compare too methodologies. Neither appears absolutely superior to the other. For forecasting, it may be best to do each and takes the superior one. It is intended to show an alternative approach to this type of data.

The Percentile Advantage

If the lab being used provides percentiles over a diverse large population, you may not need a control group. The mean percentile of the population is 50 and the standard deviation of the population is 28.87 because we are dealing with a uniform distribution. We can then proceed to compute the mean of the percentiles of those with a condition and then compute the standard error resulting in a z-score.

The z-score will likely be a little lower than a perfect experiment because the large population will likely contain some with the condition being examined. Z-scores will actually be conservative, and the cost significantly less.

ME/CFS after COVID

 I’ve been suffering from myalgic encephalomyelitis for over a year now (long covid or not, I don’t know), in an almost severe state for the last 6 months.

I recently had a Biomesight test and a long covid friend told me that you might be able to help me interpret my results.

Overview

Our usual first look visuals shows the dysbiosis and the typical pattern for ME/CFS and long COVID – an over abundance of bacteria at a low levels.

The forecast symptoms matches ME/CFS and Long COVID patterns

  1.  83.3 % match for Neurological-Sleep: Inability for deep (delta) sleep on 42 taxa
  2.  76.3 % match for Immune Manifestations: Hair loss on 38 taxa
  3.  76.3 % match for Immune Manifestations: Mucus in the stool on 93 taxa
  4.  75.2 % match for Neurocognitive: Problems remembering things on 141 taxa
  5.  74.7 % match for Neurocognitive: Absent-mindedness or forgetfulness on 162 taxa
  6.  74.6 % match for Neurological: Short-term memory issues on 71 taxa
  7.  74.5 % match for Neuroendocrine Manifestations: cold extremities on 55 taxa
  8.  74.3 % match for Neurocognitive: Can only focus on one thing at a time on 101 taxa

Drilling down into Health Predictors we see a rather high number, 13 items flagged. Looking at Dr. Jason Hawrelak Recommendations , we are at the 9%ile, not good.

Looking at Bacteria deemed unhealthy, we see the following very significant items.

  • Bilophila genus 100%ile High Level Cause Brain Fog(Cognitive impairment) Citation

Addressing the problem

The process is simple, just click this buttom

Then use the filtering button to view different suggestions. The highest priority was 1000, lowest -765 so we will look to take items over 500 and aggressively avoid items below -350. The dosages come from this summary page that links to studies, dosages should be reviewed by your MD before starting.

The avoid list is often ignored by people. They should not be. These items feed the undesired shifts.

Try for 8 weeks, then retest

While waiting for test results, keep to the suggestions.

  • As is common with ME/CFS people, you may want to be done with the disease ASAP so much you toss yourself into it. I have been there and done that. Taking everything at once risk major herx reaction. The key is rotate and pulse. Avoid substances that cause herx that is longer than 6 hours — you are not ready for those, we need to take the longer path instead of trying to climb a cliff face.
  • Try this pattern:
    • Take the probiotics, herbs and non-vitamin supplements into groups.
      • Week 1: take the probiotic for a week (#1 in priority)
      • Week 2: take one herb for a week (#1 in priority)
      • Week 3: one supplement for a week (#1 in priority)
      • Then go back to probiotic BUT take a different one (i.e. #2 in priority), same pattern for other things
    • After 8-12 weeks do a retest and see where suggestions have shifted
    • The goal is to destabilize a stable dysbiosis. In one sense, we want to do a guerilla war against it, not form up into a line and attempt march to frontal assault.

Questions and Answers

  • Do you know if my ME is due to the covid with these results?
    • It is impossible to tell from the microbiome. COVID could make an existing case of ME/CFS worse. If you were fine prior, then it is likely that COVID causes ME (i.e. Long COVID). Over time the dysbiosis between ME/CFS and Long COVID become very similar.
  • I’m allergic to penicillin (amoxycillin, etc.). What antibiotics can I take without it?
    • The best antibiotics that have been used by ME/CFS specialist were computed to be:
      • chloroquine diphosphate — anti-malarial and anti-rheumatoid agent and belongs to the drug class 4-aminoquinoline
      • dapsone – a sulfone, It works by decreasing swelling (inflammation) and stopping the growth of bacteria
      • neomycin –  belongs to the aminoglycosides group of antibiotics
      • metronidazole – belongs to the nitroimidazole antimicrobials. Metronidazole is one of the mainstay drugs for the treatment of anaerobic bacterial infections, protozoal infections, 
      • lymecycline –  tetracycline antibiotics.
    • My own preference would be to start with a tetracycline (lymecycline), followed by metronidazole, and then neomycin. This is largely based on the frequency of use that I have seen in the literature. At that point you should be retested.
      • I would follow Jadin’s pattern: 1 week on, 3 weeks off and then rotate to the next antibiotic.

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 can compute items to take, those computations do not provide information on rotations etc.

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.

ME/CFS after giving birth

Back Story

We would really like to take you up on your offer to make a youtube video (anonymous) to analyze my gut test results (OMBRE). We took a first pass on the website and found some interesting results but are a little overwhelmed at the suggestions. For reference, I have chronic fatigue after mostly recovering from POTS via the GAPS diet. This all started after giving birth. I attached the CSV from OMBRE in hopes that you are willing to help us out with this!

I understand well, my own wife developed ME/CFS also after giving birth.

Analysis

Her percentages of percentiles does not show the typical ME/CFS pattern which appears consistent with improvements from the GAPS diet.

Looking at General Health Predictors we have 17 predictors that are looking bad. Anti inflammatory Bacteria Score is 30%ile so inflammation is likely an issue

Going Forward

This person has entered their symptoms so we go with

Then use the filtering button to view different suggestions. The highest priority was 643, lowest -1014 (but 500 is where the list starts) so we will look to take items over 300 and aggressively avoid items below -250. The dosages come from this summary page that links to studies, dosages should be reviewed by your MD before starting.

Antibiotics

Usually these are not an option. But the suggested ones that are used by ME/CFS specialist are shown below

Avoids

Try for 8 weeks, then retest

While waiting for test results, keep to the suggestions.

Questions And Answers

  • When I got the list of suggestions, I started them all at once and herxed terribly. So much that I has to stop!
    • As is common with ME/CFS people, you want to be done with the disease so much you toss yourself into it. I have been there and done that. The key is rotate and pulse. Avoid substances that cause herx that is longer than 6 hours — you are not ready for those, we need to take the longer path instead of trying to climb a cliff face.
    • Try this pattern:
      • Take the probiotics, herbs and non-vitamin supplements into groups.
        • Week 1: take the probiotic for a week (#1 in priority)
        • Week 2: take one herb for a week (#1 in priority)
        • Week 3: one supplement for a week (#1 in priority)
        • Then go back to probiotic BUT take a different one (i.e. #2 in priority), same pattern for other things
      • After 8-12 weeks do a retest and see where suggestions have shifted
      • The goal is to destabilize a stable dysbiosis. In one sense, we want to do a guerilla war against it, not form up into a line and attempt march to frontal assault.
  • You mentioned my patterns are inconsistent with people with CFS yet the suggestions are very consistent with people with CFS. Does this mean my patterns are less severe or is this wishful thinking?
    • Compared to the sample that I shared with you, less severe is my guess. You have less severe dysbiosis. ME/CFS has a wide variety of symptoms; each have great variability.
  • I’m wondering if you think I should pursue the antibiotic route or if you think this should be last resort? Many people take garlic extract as a natural alternative to antibiotics. Do you think this might help/hurt?
  • You mentioned I have several pathogenic bacteria. What’s the best way to get rid of them? Is there a targeted antibiotic? 
  • You mentioned the general health predictors show 17 that are looking bad. Could you elaborate a bit on this?

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 can compute items to take, those computations do not provide information on rotations etc.

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.