Update:
I spoke with Dr Klimas's NP today on test results. We still don't have one of the immunoglobulin tests back but 95% of everything else is back.
The bad news is she told me there have been lawyers involved recently that are cracking down on doctors treating patients outside their state border. So, the NP was limited for some reason as to how we should continue forward. It was a big let down. Now the hope is to get her in touch with my local doctor and see if they can direct her, because I don't think I can travel back to Florida again any time soon.
I have low immunoglobulins (IGG) and I have known about this since the second year of illness (now 13 years). I have done the vaccination test and mounted a huge immune response to the vaccine. So, the doctors didn't think I needed IVIG and insurance was surely not going to pay for it back then.
The clinic was surprised by the negative CellTrend results. They see positives in their POTS predominant patients, what they would have done about it... I don't know?
I show high titers to Parvo and Coxsackievirus, they believed that the Coxsackie could be active...
Autoimmune panels are normal again along with all histamines. Natural killers cells are normal but she mentioned they don't show much cytotoxicity. I'm not quite sure what she meant by this?
There is a lot of stuff I am not mentioning because normal tests aren't worth talking about and I don't have the latest tests in hand...
They were glad I was seeing a local psychologist to see if we might be able to treat the pain and nausea I'm having. They think that there is some realness to visceral hypersensitivity. In the past elavil 25mg was a big help, I was functioning like a normal person and my pain/nausea was about a 2-3 out of 10 on most days and at my worst moments was a 6. I don't know why it stopped working sometime around mid 2018. Now I am around a 5-6 all the time and repeatedly hit 8+ in pain. We might possibly use it again but in higher dosage or try another drug. That's all I have for now.
I'm kinda having a let down because nothing big was found but at the same time my expectations were low because I still know that CFS (if I truly have it) still does not have a test or treatment. I'm anxiously awaiting Dr Ron Davis's presentation in the coming week to Australia. I think they are going to be unveiling some new data and I was very impressed with his presentation on youtube about biomarkers in the fall of 2018.
I must add to those that don't know. I have also seen 3 different POTS specialists: Dr Grubb, Dr Chemali, and Mayo Clinic. None of them have been able to help me. They checked me out for a lot of things, but no therapy or drug they prescribed did anything for me. Elavil and Ativan are the only 2 things that have ever done anything for me.
Dear Belbyr,
Where did you hear that "some new date" was forthcoming Australia. Like everyone else I'm sitting on pins and needles. I heard Ms. Tannenbaum's interview yesterday (I started a thread and posted it) and she is very articulate and crystal clear. The dip for me came when she said there will be treatments in 2 to 3 years. How can the severely ill endure this. So, I'm also eager to hear Dr Davis.