How can I truly know if I have ME/CFS?

[crypt0cu1t]

When you had the high dose IVIG treatment @crypt0cu1t were you give any other drug at the time the IVIG was being administered? Or any pre-med?

Yes ai had benadryl, tylenol and a few others.

 

[andyguitar]

Ok, if you are up to it I stongly recommend you have a close look at what those drugs can treat at the dose you were given. I assume the Benadryl was the pre-med. Its also used to treat allergy. Might be that which had the effect not the IVIG. There is a simple way to check. Get a Doc to prescribe the exact drugs in the same dose you were given but dont have the IVIG.

 

[Gingergrrl]

Benadryl is not a prescription in the US (it’s an OTC allergy med). One dose of IV (or pill form) of Benadryl prior to IVIG would not lead to a two month remission. My pre-meds for IVIG were Atarax (b/c I do better w/it than Benadryl), Pepcid & Tylenol. For me (not speaking for @crypt0cu1t) the improvement in overall symptoms, and the remission from MCAS, was due to the IVIG.

I had been hospitalized one year prior to starting IVIG and was getting IV Benadryl 2x/day in the hosptial (and then Benadryl injections once I went home) but it did not bring about remission and I ended up developing a toxicity to it. The IVIG infusion pre-meds are short-lived in their reactions (unless someone had a high dose of something like Decadron) but even that would not bring a two month remission from a single dose.

 

[crypt0cu1t]

Benadryl is not a prescription in the US (it’s an OTC allergy med). One dose of IV (or pill form) of Benadryl prior to IVIG would not lead to a two month remission. My pre-meds for IVIG were Atarax (b/c I do better w/it than Benadryl), Pepcid & Tylenol. For me (not speaking for @crypt0cu1t) the improvement in overall symptoms, and the remission from MCAS, was due to the IVIG.

I had been hospitalized one year prior to starting IVIG and was getting IV Benadryl 2x/day in the hosptial (and then Benadryl injections once I went home) but it did not bring about remission and I ended up developing a toxicity to it. The IVIG infusion pre-meds are short-lived in their reactions (unless someone had a high dose of something like Decadron) but even that would not bring a two month remission from a single dose.

Yeah I'm inclined to agree that it wasnt any of the premed that put me into remission. Yes, my illness was relapsing remitting before IVIG but I dont think a 2 month remission was a coincidence.

Also what's the girl on the 6th floor about?

 

[Gingergrrl]

Also what's the girl on the 6th floor about?

It’s a book that is a true story re: a girl who had autoimmune encephalitis written by her father and how challenging it was to get a proper diagnosis and treatment for her. Let me know if you can’t find it on Google and I’ll get you more info.