Learner1 means the right tests checking the right antibodies.
for EBV you have to get about 5 antibodies checked for it to be accurate.
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I wouldn't take the + and - as gospel but these are the antibodies.
If you got a CMV elisa for example it would be useless. It has to be a CMV and HHV-6 titer test.
Although Learner1 is also talking about PCR's which are a little different, will let Learner explain that.
The chart above is for EBV diagnosis and staging in immunocompetent people, not in those with immune defects. It is based on antibody production - I had high VCA IgG and no EBNA and EA when I should have for a reactivated infection. Or, on the chart here, for immunocompetent people, it says more investigation is needed:
My other doctors didn't do the further investigation, and most people I've seen here have doctors who don't either.
A PCR finds the DNA of the active virus, primary or reactivated, so if it's postive, you have it. Too many people waste their time with EBV antibodies which are designed for staging, i.e. is it a first time infection, past infection, reactivated, etc.
Also, they may not always be in the blood if the virus is hiding in the tissues. It may go in and out of the blood over time, so that's why doing the tests multiple times is wise. Dr. Proal discusses hidden infections here.
So with immunoglobulins within normal range there is no way you can have insufficient antibody production?
Maybe not. You might not be producing the antibodies you should be.
That's great news, congratulations. What percentage of recovery would you estimate it gave you? Do you still use Kuvan?
I've had multiple types of treatments, for immune deficiency, multiple infections, autoimmunity, nutrient and hormone deficiencies, POTS, MCAS and mitochondrial dysfunction. They have all helped to a degree. I'm about 90% recovered - normal life much of the time around my treatment but if I push it, like this week when I walked 9.5 miles, 7.5 miles and 6.6 miles on successive days, I felt week and had to rest the 4th day.
Yes, I still take Kuvan, and it helps.
That would be amazing! I have some autoimmunity as well so my hope is that all those things combined could be enough to get to try IVIG.
How is that going for you? With your test results, what did your doctors say?
Well nobody knows for sure but what I mean is having a test like that might indicate a totally different diagnosis. If all your symptoms align with the test. And if your very lucky there might be treatments you can track down.
Gets you out of the mire of subsets and confusion that is ME/CFS.
I have 16 distinct diagnoses that are treatable, and finding and treating them has helped. I think most people with ME/CFS have very treatable problems their doctors have not yet found. It doesn't necessarily mean we don't have ME/CFS, which is a set of symptoms, just means we have diverse complex causes for those symptoms.
