I had cholesterol issues with ME/CFS flares in the past. My last labs done 3 months ago — physician was very pleased with my cholesterol – pretty much ideal. This is confirmed in studies for a subset.

Many of the pathways and metabolites that were abnormal in CFS are also known to be features of dauer, a well-studied, long-lived survival and persistence state triggered by environmental stress (35, 36) (Table 5). Interestingly, we found that the direction of CFS abnormalities was opposite to metabolic syndrome (37) and opposite to the metabolic response to infection, inflammation, or environmental stress that has been called the CDR (7). For example, cholesterol, phospholipid, sphingolipid, and purine metabolism are all decreased in CFS and dauer but are increased in metabolic syndrome and the stereotyped CDR (Table 5). These facts suggest that CFS is an evolutionarily conserved, genetically regulated, hypometabolic state similar to dauer that permits survival and persistence under conditions of environmental stress but at the cost of severely curtailed function and quality of life.

Metabolic features of chronic fatigue syndrome [2016] A response is here

Remember that cholesterol issues are because of the ratio of good and bad cholesterol; not total cholesterol. This is shown in this study

The CFS group had higher levels of triglycerides (p = 0.03), MDA (p = 0.03) and CO (p = 0.002) and lower levels of HDL cholesterol (p = 0.001) than the control group. There were no significant differences in the levels of total protein, total cholesterol or LDL cholesterol.

Lipid and protein oxidation in female patients with chronic fatigue syndrome [2012] Higher LDL, Lower HDL, Higher Triglycerides, Lower total Cholesterol .

What Can you do?

My opinion is that the root cause is a static microbiome dysfunction – and thus correcting the microbiome is the ideal long term approach (addressing the cause and not the symptoms). According to the US National Library of Medicine studies:

• Jerusalem Artichoke (and by inference, inulin) [2020]
• Dill [2021]
• Fenugreek [2020]
• Whey protein [2020]
• Beta glucan (Barley and Oats) [2021]
• L-Carnitine Supplementation [2019]
• Black Cumin Seed – Nigella sativa [2020]
• Spirulina (blue-green algae) [2019] [2016]
• Vitamin D [2019] [2017]
• Turmeric and Curcuminoids [2019] [2017]
• Tulsi (Holy Basil) [2012] [2010]
• Sweet Potato ( Ipomoea batatas) [2021] [2021]
• Beans (Navy,black, pinto, kidney) – Canned Beans [2021]
• Soy protein(30+ grams/day) [2011] [2007]
• TWO apples per day [2020]
  • Warning: WHOLE APPLES, not juice “Intake of whole apples or clear apple juice has contrasting effects on plasma lipids in healthy volunteers” [2013]
• Only improves LDL – thus improves the ratio
  • α-linolenic acid
  • Grape Seed Extract (resveratrol) [2020]
  • Canola Oil [2018] Lowers LDL only (compared to sunflower oil),
    • No Olive Oil ” Also OO consumption reduced …significantly less than other plant oils.” [2019]
• Avoids
  • Avoid Eggs [2017] – One per day is acceptable [2020] – i.e. does not increase further.
  • Cinnamon [2021]
• No Impact (or not statistically/clinically significant)
  • Selenium [2017]
  • l-arginine [2020]
  • Folic Acid [2021] [2019]
  • Pomegranate [2017]
  • Blueberry [2021]

Please note what Apples demonstrated above — avoid D contains A and thus D must have the same effect. In general, the “raw natural form” is preferred over any processed form

Bottom Line

What strikes me about the above items is that they are often the same items suggested by the artificial intelligence algorithms on Microbiome Prescription for people with ME/CFS who have done a 16s Microbiome sample and uploaded it there.

A reader asked me to put together a list of test that could/should be done. I divide the tests into two categories:

• Actionable — the results lead immediately to an accepted treatment with high possibility of success
• Informational — this shows that there is a problem, there may be treatment of a sort – typically symptom mitigations (i.e. prescription painkillers — which hides the pain, not remove the source of it)

Actionable

These tests may result in actions. In some cases, we work the system to get a desired action.

• Lyme Disease — often a false positive will result, but this can be used to justify a minocycline prescription.
  • Testing for mycoplasma — again, to justify a minocycline prescription.
• HHV-6, EBV, CMV — suitable antivirals [2016] See this list of virus to test for
• Coagulation Panel — see A quick revisit to Coagulation Testing for ME/CFS
• Vitamin D — usually low to very low, you want to raise it to the top of the normal range
  • See Vitamin 25D and 1,25D measure – one reduces symptoms and one indicates CFS state
• All of the usual vitamin and mineral levels. You want to be at least at the middle of the normal range for all of them
• 16s Microbiome Test

Informational

These tests are ones that I would not pay for out of pocket. They do not help move you to remission

• Vitamin 1,25D – this will often be very high — characteristic, not directly treatable (see Vitamin D above)
• TH1 and TH2, see TH1 / TH2 ratio and Probiotics
• From my English book draft, I list the following items as Lab Manifestations (download the book for citations and more information):
  • Aldosterone
  • CD4/CD8 Ratio
  • Choline
  • Cortisol
  • Cyclo-oxygenase-2
  • Cytokines
  • C-Reactive Protein
  • Galantamine
  • Glutamine
  • Inducible NO synthase
  • Lysozyme
  • N-acetyl cysteine
  • Natural Killer (NK) Cell Subsets
  • NFkappabeta
  • Neopterin
  • Norepinephrine
  • Plasma Osmolality
  • Plasma Renin
  • RNase-L
  • Red Blood Count
  • Transforming Growth Factor – Beta
  • Brain Scans:
    • Magnetic Resonance Imaging
    • Positron emission tomography
    • Transcranial Doppler Sonography
    • SPECT
      

Bottom Line

Download the book above, every page is loaded with references like shown below

A reader emailed me and asked some questions.

My good friend that also has CFS/Lyme said to me that he is about 80% better in all his symptoms after using Ivermectin that his Lyme doctor prescribed him. His was almost bedridden, had extreme brain fog with depersonalization, low motivation etc. He used Ivermectin 2x a week 3ml oral. After 2 months he is now adding Metronidazol with minocyclin and his state is extremely improving. 
I tried to find some info on your blog but I didn’t find anything. Do you maybe know what Ivermectin did?  I also saw that his skin/face is looking like a baby hahahah he looks 15 years younger. 

I have a site for non-prescription items and give the list of items here. This site also provides prescription items for professionals. I looked up on that list and found:

I checked on the other common member,doxycycline (antibiotic)s, and found that it did not have a good impact.

The other item: Ivermectin,(prescription)  did not have a good profile for ME/CFS – but it does impact a lot of different bacteria

Chronic Lyme Prediction

Again, the cyclines are there with zero bad impact.

With ivermectin,(prescription)  showing good and bad impact.

Bottom Line

This was done with a-priori model of the bacteria shifts, that is, we assume that this person matched the typical shift seen in many studies and ignore the amount of shift. We know that there is a great variation of microbiome from person to person with the same diagnosis.

My criteria is that the suggestions have better odds of helping than hurting. In this case we see 2 takes appear to have worked, and one avoid did not. That is 2/3 or 66% success rate (which is above 50% — thus my criteria is satisfied, we did better than with random picks).

This list (with live time updates as data is added) on Microbiome Prescription web site. All suggestions from this page should be reviewed by your medical professionals. These are based on modelling and not clinical studies. These are based on family and lower taxonomy ranks (genus,species,strains) reported in studies on US National Library of Medicine.

In general, people report improvements from at least half of the items on the top of the list. Many items listed have been reports in clinical studies to help a significant percentage of patients. Items of special interest are those that are low in bad impact and high in good impact (i.e. Whey, pomegranate, fish oil, trametes versicolor( mushroom))
Best prediction is done when using a 16s microbiome result for the patient

A reader wrote and a blog post was the easiest

Hi Ken,
tomorrow I have an appointment with a cardiologist, and I want to check for thick blood/coagulation if possible. What blood values would I need to test? Fibrinogen, Prothrombin Fragment 1+2, Thrombin/ AntiThrombin Complexes, Soluble Fibrin Monomer, and Platelet Activation. Is that right?

This has been part of my model of ME/CFS for a long time. It is a co-factor to things like the microbiome. A summary of the old treatment advice from Hemex and transcripts of talks with Dave Berg is here.

• Soluble Fibrin Monomer (SFM) – Normal Range 0-15mg/L
• Fibrinogen – Normal Range 200-300
• Prothrombin Fragment 1+2 test
• Antithrombin III (AT),
• Protein C,
• Protein S,
• APC Resistance
• Factor II level or the Prothrombin Gene Mutation
• Lp(a)
• PAI-1
• SED (Below 5 is a concern per Berg)

Example of the Family Reports from Hemex

This is from my ancient 2000’s CFS blog that is available here