Plan of action

[Infinite1]

So I've been sick for about two years now. I originally attributed the symptoms to a terrible SSRI that I was on. Now realizing that I've likely got ME I've been actively treating myself for the last 3 months. I'm hoping to get some feedback on a good plan of action to take care of my issue(s) which are mostly fatigue, muscle weakness and twitching, PNS pain constant SNS overactivity. Also I have various food allergies; wheat, dairy, sugar etc.

An overview, I have positive EBV titers: 3.97 VCA IGG, > 5.0 EBNA IGG, negative VCA IGM. If anyone can provide a good explanation I would love to hear it, basically the doc said it reflected an old infection. My TSH was a bit on the high side 3.02 T4 a bit on the low side 1.0.

Currently I am 3 months into augmenting the methylation cycle and Mito functioning using p5p, methylB12, zinc, vit E, ribose., and to aid immune functioning using thymus, and vit C and augmenting hormones with DHEA and Pregnenolone I essentially have been seeking the "magic bullet" and have used various other supplements and Amino acids. I have also purchased a Infrared sauna to aid in the detox process.

Hoping to determine what I'm doing right/wrong and what I should consider to make this process go quicker, i.e. antiviral(s) or whatever. Thanks!

 

[caledonia]

I would add magnesium for the twitching and methyl folic acid to go with the methyl B12 for the methylation cycle. Read up on Rich Vank's and Freddd's protocols for methylation blocks. You can get tested to see if you have a block. Rich Vank has the info on this test.

I would do a complete thyroid panel - TSH, free T3, free T4 and thyroid antibodies. You could have a thyroid problem and not discover it if you don't do the full panel.

I would be extremely careful with the FIR sauna. Start with one minute a few days a week and gradually work up from there if tolerated. You may need to wait until methylation is working properly before attempting FIR.

I would be tested for adrenal fatigue using a saliva test with 4 samples taken throughout the day. ASI is the standard.

Have you addressed digestion - if you're not digesting properly the supps will not be assimilated and are thus a waste.

You should be avoiding your allergic foods.

It's easy to make yourself worse, so start low and go slow. Do a lot of research before trying heavy hitting stuff like anti-virals.

Also wouldn't be a bad idea to test for heavy metals like lead and mercury, and chelate those out if found.

 

[Hip]

Now realizing that I've likely got ME I've been actively treating myself for the last 3 months.

Have you checked your symptoms against the CDC definition of ME/CFS, and the stricter CCC definition of ME/CFS (page 2), to see if your symptoms match?

In the CCC definition, if you satisfy the criteria of having post-exertional malaise (PEM), that is a strong indication that you do indeed have ME/CFS. Although under the CDC definition, it is possible to have ME/CFS without having PEM.

You might also want to rule out other diseases with very similar symptoms to ME/CFS, which include celiac disease and anemia. Your doctor can check for these. See also the "Ruling Out Other Conditions With Similar Symptoms to ME/CFS" section of the following document:

ME/CFS Roadmap (Chronic Fatigue Syndrome — A Roadmap For Testing And Treatment)

The above roadmap document also details various treatment possibilities.


If your lab tests say that the EBV is a latent past infection, then it probably is not contributing to your ME/CFS. However, ME/CFS is associated with a number of different infections, so to investigate these, you need broader testing that includes coxsackievirus B and echovirus tests (must be done at ARUP Lab, according to Dr Chia), HHV-6, cytomegalovirus.


Rituximab treatment is currently completely curing ⅓ of ME/CFS patients, makes an improvement in another ⅓ of patients, and has no effect in the final ⅓ of patients. Ref: 1