Immune levels

[cb2]

oh yes. thank you for the boundary- I am trying to learn to set those myself. off to see the lyme dr. kinda overwhelmed myself with this decision. take care.

 

[RYO]

I was being kind calling him a dumb ass. He does research on asthma. Even if he did give me tbe IVIG, he would have no idea how to cater it to my ME. I shudder to think how he could have messed me up with his ignorance about ME.

I don't think any physician including ME/CFS specialists can claim to have extensive knowledge or experience on how immunoglobulin can best be used to treat ME. I am speculating that immunoglobulin may help some patients with ME (without known immunodeficiency such as CVID or PI). We need well designed studies to help figure out proper dosing and which subset of patients may benefit.

 

[minkeygirl]

@RYO He was a dumb ass for several reasons. First he wanted me to have a cognitive assessment before and during to determine if IVIG was working. I contacted the Primary Deficiency foundation and they had never heard of that and suggested I have them contact him. He also wanted me to have a psych eval before he would even do it to make sure my symptoms were physiological. I told my PCP even if I was completely nuts, that didn't mean I still didn't have an immune disorder and needed treatment.

He was completely clueless about ME/CFS, his notes to summarize the appointment were what I can only describe and total fabrication due to his lack of knowledge and he is not someone, even if I didn't have ME, I would have treat me. He was an allergy specialist. I would have considerably more respect for him had he said this is not my area of expertise and got my HMO to send me to someone who had a clue.

I will be seeing a clinical immunologist who has been treating ME/CFS for over 20 years and rx'ing IVIG. I trust his judgement based on years of expertise vs some ego driven guy who was clueless.

 

[susank]

Minkeygirl - did you ever do the Pneumovax challenge? Did you pass or fail?

Are you still posting here?