What Diagnostic Tests Should I run?

[frozenborderline]

I have a few upcoming appointments. One with a neurologist, one with a rheumatologist, and one with Susan Levine in NYC.

The other doctor I just went to has run all of the tests that she could (they didn't have tests for cytokines, but it's a test that has almost all co-infections for lyme, lyme, all possible viral infections--the only thing she couldn't run is other borrelia species, and idk if I can afford the igenex test for that.)

I want to get tested for all of the possible cytokines that could be elevated in CFS/PTLDS. Also any other diagnostic biomarkers. Cpet test, and a test that would look at metabolic problems. Also immune/autoimmunity markers.

I don't know exactly which doctors can do these, or if these would be covered by insurance? Also, what are some other possible diagnostic tests I could look at ? I've already had full thyroid panel, vit d test, cortisol saliva test. also complete blood count.

I haven't been tested for any sex hormones.

In addition, is there any way a spinal tap could benefit me? the neurologist said we could do it if I really wanted to rule out neuroborreliosis, but we both think that's unlikely. However if they could run some useful diagnostic tests with my spinal fluid that they couldn't with my blood, I'd be game

 

[Hip]

all possible viral infections

If those viral tests did not include an antibody neutralization test for enterovirus (coxsackievirus B and echovirus), then you have not been properly tested for enterovirus. It's only neutralization tests that Dr Chia says are sensitive enough to reliably detect chronic infections.

Enterovirus and herpesvirus are the two main groups of virus linked to ME/CFS, and if you want to try some antivirals or immunomodulators to fight any active viral infections you may have, then testing for these viruses is usually the first step.

Some details about enterovirus and herpesvirus testing are found in the 1st round tests section of my roadmap of chronic fatigue syndrome / myalgic encephalomyelitis testing and treatment.

 

[ebethc]

If those viral tests did not include an antibody neutralization test for enterovirus (coxsackievirus B and echovirus), then you have not been properly tested for enterovirus. It's only neutralization tests that Dr Chia says are sensitive enough to reliably detect chronic infections.

Enterovirus and herpesvirus are the two main groups of virus linked to ME/CFS, and if you want to try some antivirals or immunomodulators to fight any active viral infections you may have, then testing for these viruses is usually the first step.

Some details about enterovirus and herpesvirus testing are found in the 1st round tests section of my roadmap document.

1) Hip's roadmap is excellent... I second it as a great starting point..

2) In addition: educate yourself about SIBO / gut dysbiosis / leaky gut ...
Very important to do everything that you can to address gut issues, and alot of this you can do on your own via diet changes and (relatively cheap) supplements... It's just takes a lot of persistence... There are tests, too.

here's a presentation by Dr Maureen Hanson which include data showing that CFS patients have differences in gut bacteria compared to controls... starts ~1:30

[study] Treatment for SIBO
https://www.ncbi.nlm.nih.gov/pubmed/24891990

fyi - Hanson just rec'ed a grant to study CFS, as did Lipkin (another person studying the intersection of viruses and microbiome)..
https://www.nih.gov/news-events/new...alomyelitis-chronic-fatigue-syndrome-research
http://news.cornell.edu/stories/2017/09/94m-nih-grant-funds-chronic-fatigue-syndrome-center

3) Overview of research going on in the field, told in the course of video presentations from the OMF symposium in august.. I found the Hanson video most interesting based on my own health, but there is a lot of good info in other videos...