This is a follow up on the prior post below. The readerβs comments are βI am feeling much better but still very fatigued and lately been quite achey. The recommendations have changed significantly except for whole grain barley.β
Let us first do the simple numbers. A lot of values are the same (typical) but many of them show improvement. π indicate significant reduction is out of range values See Technical Note: Lab Quality Versus Bacteria Reported We would expect a 15% drop from lower lab quality, the drops shown are well below that).
Criteria
Current Sample
Old Sample
Eubiosis Index
62.8% π
59%
Lab Read Quality
4.3
8.4
Outside Range from JasonH
8
8
Outside Range from Medivere
20
20
Outside Range from Metagenomics
10
10
Outside Range from MyBioma
8
8
Outside Range from Nirvana/CosmosId
18
18
Outside Range from XenoGene
42
42
Outside Lab Range (+/- 1.96SD)
9 π
16
Outside Box-Plot-Whiskers
38 π
98
Outside Kaltoft-Moldrup
56 π
139
Bacteria Reported By Lab
494
752
Bacteria Over 90%ile
20 π
82
Bacteria Under 10%ile
66 π
232
Shannon Diversity Index
1.465
1.701
Simpson Diversity Index
0.035
0.028
Chao1 Index
7474
17093
Shannon Diversity Percentile
28.5
61.4
Simpson Diversity Percentile
30.2
21.5
Chao1 Percentile
28.9
87.7
Lab: BiomeSight
Pathogens
18 π
39
Condition Est. Over 90%ile
4
4
Kegg Compounds Low
969β:-)
1242
Kegg Compounds High
5 π
23
Kegg Enzymes Low
272
284
Kegg Enzymes High
17 π
75
P or P Chi2
.9999245
.999999999
Health Analysis Comparisons
I have not created an automatic compare yet (on to do list). Many values were similar, some interesting ones with improvements are below. Jason Hawrelak Criteria got worse, but I have deep reservations on using his criteria on Biomesight tests (he based them on a very different test method).
Current
Prior
General Health Predictors: Flagged Bacteria
8 π
10
Anti inflammatory Bacteria Score
14.4%ile π
13.3 %ile
Lactate (controls many bad bacteria)
33.1 %ile π
20 %ile
L-Lactic Acid (controls many bad bacteria)
47.1 %ileβ:-)
25.2 %ile
NADH (Typically low with ME/CFS)
26.5 %ileβ:-)
13.7 %ile
Hydrogen peroxide (controls many bad bacteria)
17.3 %ile π
5.8 %ile
D-Lactic Acid (Associated with brain fog)
6.5 %ile π
7.9 %ile
Potential Medical Conditions Detected
2 π
7
Bacteria deemed Unhealthy
7 π
22
Jason Hawrelak Criteria
56.4 %ile
75.8 %ile
Going Forward
A review of the Health Analysis was done above, with the two items: Mood Disorders and COVID-19 (a proxy for ME/CFS IMHO). A secondary review of all the items on [Changing Microbiome]/[US National Library of Medicine Studies] for high items not flagged. Nothing added.
Doing what is becoming a regular pattern: βJust give me suggestionsβ and then using given symptoms under Special Studies using these items:
Note: items like age and gender are omitted as well as any other symptoms that we do not have sufficient data.
First the filtered PDF suggestions. The list is much longer than usual:
And the to avoid list is more typical.
Let us go over to viewing the consensus for the latest microbiome sample to get some suggestions.
The highest suggested value/priority was 485 (so 240 for cutoff), lowest value was -574 ( so-287 for cutoff)
So in summary, shift a diet to low sugar, gluten free with moderation in meat (no guidance on chicken or fish). If your MD is willing, I would suggest reviewing Cecile Jadin approach with antibiotics and rotate with those suggested above. IMHO Continuous on a single antibiotic is more likely to complicate the microbiome.
Postscript β and Reminder
I am not a licensed medical professional and there are strict laws where I live about βappearing to practice medicineβ. I am safe when it is βacademic modelsβ 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.
A reader that does microbiome analysis of her ME/CFS daughter ‘s microbiome using Microbiome Prescription expert system sent me this note with some literature.
Your wonderful system recommended beta-glucans [also written Ξ²-Glucan] for my daughter,Β and when I looked further, I found this. Iβm trying her on them for a month-, after testing her for reactions for three days- the first week has been hopeful. Will keep you posted if you wish.
Reader
Ξ²-Glucan is a nonstarch polysaccharide having documented health benefits and industrial applications. It can be extracted from various sources, including cereals, bacteria, molds, and fungi. The chemical nature of extracted Ξ²-glucan from these sources differs slightly. This variation in chemistry defines its industrial uses and health benefits.
There is not much literature available for ME/CFS.
“The findings showed that the beta-glucan supplementation significantly improved cognitive fatigue (assessed with FIS-40 scores) after the 36-week treatment compared to the baseline (p = 0.0338). Taken together, this study presents the novel finding that yeast-derived beta-glucan may alleviate cognitive fatigue symptoms in ME/CFS.” [2023]
Ξ²-Glucan Improves Conditions of Chronic Fatigue in Mice by Stimulation of Immunity [2020] Reduces TNF-Ξ± (which is connected to mast cell issues)
Effects of Ξ²-(1,3β1,6)-d-glucan on irritable bowel syndrome-related colonic hypersensitivity [2012] “Ξ²-Glucan did not affect the pain response in general but specifically affects the visceral pain response.”
Serum concentrations of 2′,5′-oligoadenylate synthetase, neopterin, and beta-glucan in patients with chronic fatigue syndrome and in patients with major depression. [1994]
“ the dosage of supplementation ranged from 2.5 to 1000 mg daily [of beta-glucan] for up to 6.5 months … The primary physiological outcome of the majority of the interventions was immunomodulation, which resulted in (a) strengthened immune defense that reduces the incidence and symptoms of cold, flu and other respiratory infections and (b) improvement of allergic symptoms.” [2021]
Ξ²-glucan attenuates cognitive impairment via the gut-brain axis in diet-induced obese mice [2020]
Often the expert system on Microbiome Prescription comes up with Barley as a strong recommendation for ME/CFS people. Barley is an excellent source. Personally, I have oats or barley porridge a couple of times every week. The impact of the Ξ²-Glucan in the Barley may be the mechanism — we just do not have as many studies as we do for Barley.
“The primary sources of food Ξ²-glucan for humans are cereals (especially oats and barley), fungi, algae, and yeast ” [2023] A table from this article is below
“Ξ²-glucans bind to specific receptors on immune cells and initiate immune responses…. In vitro study found that the fermentation of barley and oat Ξ²-glucan by human fecal samples show variations in SCFAs production and the bacterial populations of Clostridium histolyticum and the ratio of BacteroidesβPrevotella species. Absorption of these SCFAs by the gut epithelial cells helps in regulating cell differentiation, proliferation, apoptosis, and gene expression (210). Butyrate increases the protein expression of tight junctions such as ZO-1 and claudin-1, resulting in enhanced intestinal barrier function.” “Ξ²-glucan is an essential food ingredient in controlling metabolic dysregulations linked to metabolic syndrome. Ξ²-glucans have a very minimal probability of having any unfavorable side effects and are reasonably inexpensive.” [2023]
Bottom Line
Real simple: Barley or Oats porridge for breakfast each day! Since there are some chemical differences between the Ξ²-glucans in these two grains– rotate between these (and different brands) at least monthly.
Using the generic suggestions for me/cfsβwe see both barley and B-glucan are positive (but oats are slightly negative). The more detailed citizen science suggestions are still be worked on, but I expect similar.
Reviewing Clinical Trials, my impression is 1 gram/day of Ξ²-glucans which translates to 20 grams of Barley or 40 grams of Oats per day.
“30g uncooked oats or barley will make a fairly small bowl of porridge whilst 70-80g will provide a particularly large serving for one person. Traditional porridge recipes tend to use oatmeal with approximately 200ml of water per 50g oats, and a pinch of salt.”
University of Aberdeen
Some people will advocate just eat mushroom. While correct that it contains beta-glucans, we need to be careful not to slip into homeopathic dosages!
Among those, mushrooms feature a particularly high level, so itβs no exaggeration when we say βfor beta glucans, look to mushrooms!β The amounts of beta glucans found per 100 g of raw mushroom include 2.3 g (maitake), 2.0 g (bunapi), 1.9 g (eryngii), 1.8 g (bunashimeji) and 1.5 g (shimofuri hiratake) (Hokuto data).
When we go to typical US mushrooms (i.e. Button), we drop to .75 g/100 grams [FDA]. So we are talking about 5-6 oz of mushrooms per day. That 3/4 of the typical mushroom package per day per person.
Celiac and Gluten Sensitive Issue
Most beta glucan supplements are produced from Saccharomyces cerevisiae (thus gluten free). For example the item below is about US$17.00 and gives 100 days at 1 gram per day.
I should note that there are different forms of beta glucan, for example above it is the 1,3/1,6 forms. Another product has 1,3/1,4 and is derived from Oats (you will have to write the company to see if it is gluten free or low gluten).
The cost per gram is much lower as bulk powders than with pre-filled “premium” capsules – the same volume of beta glucan can be as high as $250 (12x more) with some products.
I have occasionally had Nicotine show up in microbiome prescription suggestions. I have tended to skip it because that usually implies smoking -- not a healthy choice. A person recently share their recovery story (below - as written by them) using Nicotine Patches, not smoking. It is an interesting aspect that I had not considered before.
My Journey to complete remission
Updated June 2023
#TheNicotineTest
Twitter: NickChambers2
ME/CFS
Diagnosed in 2015 – 8 years ago – Possible Glandular Fever.
Vax injury (AZ)
2021 – 2 years ago – Moved from mild to moderate. Increase in symptoms and severity. Mostly housebound.
Mild & Moderate. I need to use the bannister to climb the stairs. Iβve been generally housebound since my Covid vaccine.
Iβve included some links in this document as some people have asked for them. Various alternatives are usually available and often at a lower cost. Iβm not endorsing or recommending anything.
My Health Routine:
Most of these are daily and Iβve been doing most of them for 12 months or more.
At one stage I was taking 96 tablets a day. Iβm now taking 35 tablets a day.
EMFβs – Iβve moved our bed and my childβs bed a foot from the wall due to increased EMFβs from the electric wiring. I no longer charge anything in my room. This is the EMF reader I own: https://amzn.eu/d/7yb66g0
Mobile Phone: I try to not have my mobile in my pocket, to reduce any potential radiation exposure.
Also experimented with:
Methylene Blue
DMSO
Diamateous Earth
High dose B12
Methyl B Vitamins
Nebulising glutathione
Lymphatic drainage massage
Cryotherapy
Nattokinase
Rectal Ozone Treatment
Energy Therapy
Iodine (Lugols)
Colonics
Binaural Beats – Theta Waves
Acupuncture
Creatine Monohydrate
Meditation
Activated charcoal
Juicing 10cm ginger root a day
Anti Depressants
Armpit detox (as aluminium levels were high)
Mushrooms (Chaga, lions mane etc)
CBD oil (no THC)
Melatonin 5mg before bed
Herbal remedies
Homeopathic remedies
Not working 9-5 to reduce stress
Yoga, Pilates & Stretching
Mindfulness
The Lightning Process (brain retraining)
Talking therapy
Keto diet
Goat Kefir
Irlen lenses to reduce light sensitivity
Ear plugs/Air pods to reduce noise sensitivity
Nutritionist for 12 months to assist with the mine field of supplements
Oat Test β told me I had high level of aluminium and an e-coli infection – who knew!!
DNA Test (www.mydnahealth.co.uk – pro version) I donβt absorb vitamin D from the sun very easily (that explains the SAD Syndrome!) increased my vit D to 10,000 IU a day
York Test β Told me I have various food intolerances. Amended accordingly.
My Favourites β€οΈ:
Nicotine Patches (Game changer)
Coffee enemas
Vagus Nerve stimulation
Juicing (lower energy required for digestion)
Low dose naltrexone β definitely helped, but struggled to find ideal dose. Currently back down to 1ml a day.
Did a www.biomesight.com test and followed recommendations for improved gut health
Sauna blanket β Helped to detox and sweat β we donβt sweat when we have fatigue!
Red light β no change to pem or brain fog, but it made my hair grow back and fixed my bletheritis!
1g Cinnamon capsules a day for tight hamstrings
Cordless tens machine for muscular aches and pains
Intermittent Fasting – 16:8 for 6 days a week for probably the last 9 months
My Nicotine Patch Journey
Position: Left shoulder (upper body is best, but not neck or head). Put new patches in different areas of left shoulder to avoid irritation from patches. Reduced effectiveness if placed on fatty areas apparently. May come off in Bath. Use additional tape to hold in place if you need to.
These patches canβt be cut, but if you want to start on a lower dose (3.5mg), place some tape underneath the patch, covering half.
Started Patches: 15th April 2023
Days 1-7 : 7mg Nicotinell patches, worn 247
Side Effects: Nausea, headaches, herxing, flu like symptoms, increased depression and anxiety. Sleep affected. Crazy angry dreams.
Days 8-20: no patches. Feeling better each day, but only 90% recovered.
Days 21&22: 7mg patches. 247. Thought process is that I might need to mop up the last bit of spike protein. Same side effects as before.
Days 23-34: No patches. Feeling 95% better β all symptoms.
Days 35&36: 7mg patches. Just in case right? Hardly any side effects this time. I think it might be out of my system.
Days 36 onwards: Iβve got drunk, Iβve had a cold and cough, Iβve been kayaking, Iβve been on holiday and had to run to the gate as nearly missed the flight, Iβve dug holes and mixed cement. Only lingering symptoms are minor body jerks and air hunger. Still no PEM or brain fog.
Day 56: Happy, Happy, Happy.
Future: I will try the patches again for two days in a months time. Just to see if I herx etc.
Part of @RenzPolster’s comment on a recent Health Rising article:
“in healthy people after exercise: the DMN [default mode network] is being switched off and the central threat response networks are being activated. In ME/CFS, however, parts of the DMN are NOT being turned off after stress exposure but are activated instead.”
To help remove the spike protein, I detoxed before, during and after the patches.
Daily supplements:
Activated Charcoal 500mg,
Vitamin C 5g,
Ashwaghanda 500mg,
Licorice Root 500mg,
Psyllium Husk Powder 3g,
NAC 1.5g.
I would also take my usual probiotics, prebiotics and vitamins and mineral supplements.
Note: I took the patches off on two nights, as I was struggling to sleep. I just put it back on when I woke up in the morning.
Summary:
Iβm now in complete remission. I mean COMPLETE REMISSION (wellβ¦ I have very mild air hunger and body jolts once a day). I feel the same as I was prior to my CFS diagnosis 8 years ago.
The NICOTINE PATCHES were like a light switch moment. The only thing that physically worked and continued to work for more than a week.
QUESTION: Am I in remission because of all the other things Iβve done/doing, which made it easier for my body to recover once the Nicotine Patches did their thing? Time will tell.
Interesting fact: My son would always want to feel my bicep like 8 year olds do. It has always hurt my bicep to tense it (since CFS) and it was sore when my son would squeeze it – but I manned up and let him do it anyway π.
But since the nicotine patches, the soreness has gone and my muscles feel fuller again!
UPDATE: 55 days in, i was on holiday and I caught a cold. A few days later I felt the fatigue, brain fog, anxiety return π. Iβd also developed constipation. Putting 2 and 2 together, I realised I wasnβt taking all my pre & probiotics and I wasnβt doing my usual Pemf, oxygen or coffee enemas etc.
I bought some psyllium husk and other prebiotic fibres and within 12 hours, my fatigue, brain fog and anxiety had completely gone! Therefore, this reaffirms to me, that our gut health is so important in our recovery.
My supplement list
(Taken in the last two years – for different symptoms – Bold are my existing supplements)
K2-7+Menaquingold +K1
Ubiquinol
Curcumin
Omega 3 (DHA/EPA)
Multivitamin
Acetyl L Carnitine
Creatine
PQQ
NAC
L Carnitine
Alpha Lipoic Acid
Glucosamine, Chrondroitin, MSM
Vitamin D3 – 5000 IU
NADH Sublingual
Liposomal Glutathione
Resveratrol
Silymarin Complex
Echinacea
Black Seed Oil
Chitosan & Chromium
Choline & Inositol
Olive Leaf Extract
Calcium Hydroxyapatite
Trans-Resveratrol
Antarctic Krill
Trans-Resveratrol
Vitamin B12 (Sublingual)
Magnesium – Various types
Vitamin C Sustained release 3g a day
Vitamin B3 (Niacinamide) prolonged release
Aloe Vera Juice
Organic Ashwaghanda KSM-66
Selenium – 200mg a day
Potassium
Chelated Manganese
Flushing Niacin
Starflower Oil (omega 6)
Quercetin – 500mg
L-Theanine
Nattokinase
K-2 – 100mg
Zinc – 50mg
Green Tea / EGCG
ADRENergize (Adrenal support)
Berberine
Astralagas
Monolaurin
Lions Mane
Chlorella
Spirulina
Lecithin
Cinnamon – 500mg (affects good e-coli?)
Garlic Oil
Melatonin – 5mg
Panseng Ginseng
L-Lysine
Rhodiola
Ginkgo Biloba
BCAA
L-Arginine & L-Citrulline
Iron
Activated Charcoal
OPC – Grape Seed Extract
PROBIOTICS
Sporebiotics
Symprove
Bio cultures complex
Iherb – California Nutrition 30 billion
Probiotic complex
Acidophilus
MicroMax – The Healthy Company
Optibac – Immune Support
Chuckling Goat Kefir
POWDERS
Turmeric
Ginger
Ashwaghanda
Pine Pollen
Rice Bran
Wheatgrass
Hemp Protein
D-Ribose
Lucuma Powder
Moringa Oleifera
Baobab Powder
Vitamin C Powder
Chlorella
L- Glutamine
Collagen Protein
PREBIOTICS
Inulin (chickory root)
Bimuno (GOS)
PHGG (Partially Hydrolised Guar Gum)
Guar Gum Powder
Gum Arabic
Psyllium Husk Powder
Acacia Powder
Pure HMO (Human Milk Oligosaccharides)
Organic Potato Starch
Bifido Boost (XOS)
Lactulose solution
Note: Many prebiotic and dietary adjustments were made after my www.biomesight.co.uk test. Iβve done three altogether over the last 12 months. Results also uploaded to www.microbiomeprescription.com for further insight, analysis and recommendations.
I wanted this to go beyond just ME/CFS because there is a huge variety of symptoms and co-morbidity seen with ME/CFS. After testing and tuning the algorithm, I am pleased with the current results.
Clicking it will move to the page below. YOU MAY FIND THAT IT TAKES UP TO A MINUTE (We are doing a massive number of computation)
This will show a tree of the bacteria involved. The Species are under the genus they below to. In the example below we see the ENTIRE phylum that Bifidobacterium is in are low (none found) of 9 species whose presence would likely reduce your symptoms.
Elsewhere you may see highs with certain bacteria species desired to higher. Often the symptom key is at the species level.
At the bottom you will see a button to get suggestions
The next page shows the symptoms being targeted to and choices of what you want to consider.
Make any changes desired and click show suggestions
REMEMBER these are suggestions for ONE person using their Symptoms and their microbiome profile. It is intended for them only.βYour own suggestions may be very different with many items exchanged between ADD and REMOVE.
This approach sidestep the proforma process often drilled into researchers (you must have a healthy control group and a verified, criteria matching target population). I kept to rigorous statistical analysis while ignoring these constraints which are philosophical in nature. We used the available data and set our significance level to P < 0.005; instead of the typical research level of P < 0.05. In other words, we are 10 times more certain about our results.
CFS Remission 