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@SOC - Just wanted to say thank you for highlighting high-dose CoQ10. I've started taking 800mg+/day and found it definitely helps with PEM symptoms. Note: I tried smaller doses earlier (100-400mg/day) with no noticeable effect. The dose definitely makes the difference.

Although Buhner's basic protocol is considerably cheaper, I've come across patients saying it does not adequately address co-infections, or that Cowden helps with one or more co-infections. I think Buhner himself also admitted that area needed some more work; he released another book and updated...

@KimmyB - I'd have to second Ema's post. IgeneX Western Blot IgG and IgM (#188 and 189 on their test form, I think) was a little over $200 for me. That was without insurance. I'd suggest going on a "challenge" for about a month prior to your testing, to increase your chances of getting a...

@Daffodil @Dufresne - Some folks on MDJunction reported Cowden said not to combine his protocol with antibiotics. I think Buhner's might be safe to do with abx. I have heard good about Buhner, Zhang, Byron White, and Cowden. Knowing what I know, I'd probably go with Cowden Condensed...

My primary physician, although I had a test request from my specialist, which probably helped move things along. Igenex is paid outside of insurance, but cheap at around $200 total for IgG and IgM Western Blot (Igenex test #188 and #189). Co-infection testing was done through a basic lab...

I was alarmed at the claim* that psychological/emotional stress results in illness by weakening the immune system. To my knowledge, there is no proof a normal immune system can hold back Lyme disease. Even the CDC recognizes the need for at least ~30 days antibiotics, not to mention ILADS...

I'd have to echo what JamBob said, in a way. Exercising while sitting or laying down may make a difference, especially if you have orthostatic issues. There's not a limit of 30 seconds per day. Rather, they're recommending 30 seconds per repetition set, with around a few minutes rest in...

@Bansaw - If you have ME/CFS, then I'd heavily suggest dropping down on the exercise and would ask you to consider a different form, perhaps. Reposting from this because I think it'll help: If you exercise, I'd suggest doing it in shorter bursts than you would have when healthier...

@summersun - Although I do not know enough about your condition to really know what's going on, I do know that angina is a known symptom in ME/CFS and according to Dr. Myhill stems from mitochondrial issues in the heart. I experience this sometimes when doing too much, mentally or physically...

@travis13 - I'm assuming you've had a normal battery of tests run, such as thyroid panel, electrolytes, iron, B12, 24-hr cortisol, etc. Like Martial, I've heard of Shoemaker for mold stuff. I must admit, though, that the practice appears sketchy to me. Regardless, I've heard secondhand of folks...

I did try to get some edits, but I was crashing something rough that week. Either my computer or my brain was givin' out. :whistle: @taniaaust1 - Added. I originally linked the study via the cross symbol thingie, but putting it in the paragraph below might be more effective for the casual...

I've heard bad about Breakspear. It looks like they might treat ME/CFS as "fatigue" with a GET recommendation (which is a big no-no for this illness). On Breakspear: On KDM:

@Nana86 - I don't know enough about galactose to comment. But I would consider possible interactions. On D-ribose, I've never heard of an initial worsening of symptoms or increased muscle pain. From what I've read, D-ribose is actually a simple sugar naturally produced by the body, made using...

I put a variation of this together to give to some folks. I may go back and convert the links to proper scholarly citations, but for now I'm releasing it since today is May 12th - ME/CFS & FM Awareness Day. I figure it might help others. If you repost, please be sure to include the links...

@Esther12 - To my knowledge, the issue was with blood and urine PCRs, but never on the actual Western Blot test. There was also concern on documentation, perhaps that IgeneX reports their own standard, but on my paperwork IgeneX includes CDC requirements, too. If you have something different...

Yabby, I actually found IgeneX inexpensive. It was maybe ~$200 for IgG and IgM Western Blot outside of insurance. IgeneX test #188 and 189. I got mine done via my local primary doc (PCP), though I did get a specialist's request prior which probably helped push things along. The blood draw fee...

@Hip posted a list of PEM Busters.

It depends. I remember reading the reduced form is better for older folks. But individual mileage may vary.

The one I was given was CNSVS. It displayed various indicators, one of which was something like reaction or processing speed. It might help to prove that you'd be unable to keep up with production demand, have significantly reduced memory, etc. But you'd also need a proper doctor/specialist...

D-ribose significantly helped with daily body pain. It tends to make me less of a grump, and perhaps by consequence when I am not in as much pain/grumpy and can concentrate better, I might be able to do slightly more. D-ribose is better than a pain pill for pain and doesn't come with the...

Yes, I would say diet is a major factor in weight maintenance/loss. If you are able, I'd suggest tracking your daily calories and eating foods that make you feel full so you aren't as hungry later. For me, that's typically protein/fat like chicken, turkey, eggs, even pork and steak. I can also...

I agree with Valentijn. It's the proof of impairment they would be looking for, regardless the label. Even if you don't meet the requirements for an ME/CFS diagnosis, you might still be under something else. Do you have any tests/assessments from your doctor that prove your disability? There...

Okay, so a follow-up post. I got my results back: Lyme Western Blot IgM: 39 IND, 41 IND Lyme Western Blot IgG: 39 IND, 41+ Babesia IgG: Positive Bartonella: Negative Ehrlichia/Anaplasma: Negative I had a bulls-eye rash back in college. Unfortunately, the physician I saw didn't know enough...

Most oral glutathione has a very low absorption rate. Significant issues occurred with IV glutathione for some. I have heard good things about S-acetyl-glutathione, which is in Glutathione Gold and Xymogen brands. Some people have been able to increase glutathione via undenatured whey or...

@chickpea - It might help to read this thread and this thread. ME/CFS might have a genetic component, as a relative is more likely to be diagnosed with the disease than not. Also, I remember reading something like 35% increased rate between twins. If you have an infection on top of that, that...

@quietjamboree - D-ribose helps with ATP, basically eliminating a step in the energy process. Caffeine in coffee/tea helps with cyclic AMP. Caffeine is also a vasoconstrictor, which might help with low blood volume and also with orthostatic intolerance sometimes found in ME/CFS. If you are...

A beta blocker can cause a drop in blood pressure as well as heart rate. It is sometimes paired with the vasopressor Midodrine and/or increased salt/water intake to compensate for low blood pressure and tachycardia. Also, is your blood pressure or heart rate already low?

Hi, Somnolent - I would actually suggest you get other conditions ruled out first, such as low B12, low iron, etc. See if you can safely eliminate common allergens from your diet, like dairy and wheat, to see if it improves your condition. Also, consider doing an environmental allergy test...

Brain fog can be caused by allergies, lack of oxygen, etc. Some patients have orthostatic intolerance, which can cause low blood flow to the brain. Other patients have infections which can cause fever and/or inflammation of the brain. From Dr. Sarah Myhill: I am glad you were able to have a...

Aspirin, Acetaminophen, Tetracycline, Prozac, Xanax, Valium, Depakote, lithium. Per here: I'm guessing anything that generates free radicals and reduces glutathione would result into mito damage. That might be every medication? Interesting article. It ties together various known substances...