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Please help- not sure where to go from here

jlynx

Senior Member
Messages
116
I've had a terrible day and a lot of brain fog right now so sorry if this is hard to read. I had an appointment with an immunologist today about starting IVIG. I have high titers for HHV-6 and Parvovirus B19. I've been on Valcyte for five months.

I only saw this immunologist as the CFS specialist I see does not take insurance and IVIG would not be covered.

First of all there was a mistake and he does not prescribe IVIG, when the nurse said he does. He spoke to me like I was two years old and told me I was ignorant. He basically said my primary doc is scamming me, and the viruses are not the cause of my CFS, and that there is no cure for it. He said since my immunoglobulin levels are already good that the IVIG would make me worse. He referred me to another immunologist at Penn Medicine in Philadelphia. He said he's the best of the best but he possibly wouldn't take me. But he would try to get me in if there was a problem, or else the new immunologist may be able to refer me to someone else.

I did show him two studies where Parvo can be the cause of CFS and can be cured by IVIG. He said I should get the PCR test for Parvo to see if it's chronic. And to see the referred immunologist for a second opinion about it.

It was unbelievable. I completely wasted my time but please tell me where I should go from here. Please confirm that he's completely full of s***. Or just any support or advice, I would appreciate it. He made me feel extremely bad and frustrated.
 

AndyPandy

Making the most of it
Messages
1,928
Location
Australia
I am really sorry you had such a bad experience @jlynx. Bad doctor appointments are so upsetting.

After one bad appointment I told my husband that I would have got more pleasure out of burning the money paid. It was over $300. He told me to drink red bull for my severe ME/CFS.

I am sorry that I can't offer any suggestions.

Hopefully others will have some useful comments. It might help if you say where you are living and then others might be able to recommend a better doctor.
 

jlynx

Senior Member
Messages
116
@AndyPandy, Wow that is horrible.

I'm not going to bother seeing that doctor, or others at this point. I don't want to waste more time and money. And I'm not optimistic at all that he'd be able to help me. I'm going to just forget the IVIG for now since it's proving to difficult to get.


I've ordered Equilibrant and Inosine, hopefully they help to bring my viral levels down.