Finally! A good local doc and IVIG

[SOC]

Ha ha ha. Yeah....don't think that's gonna happen any time soon. Not only would we have to be insane, we'd have to be telepathic as well. At least in my case, I didn't start researching ME/CFS until I had a whole slew of symptoms and was trying to figure out the cause. Not like I was reading forums beforehand looking for something to emulate. So we'd have to know ahead of time which symptoms we were going to choose in order to develop an-impossible-to-diagnosis-and-treat disease. That's pretty talented of us.

Exactly! I was sick for years before I ever heard of ME/CFS. Somehow I managed to make up a slew of diverse symptoms crossing multiple body systems that just happened to line up exactly with this imaginary illness I'd never heard of? Tricky of me.

Yeah, they think we're a pretty talented bunch. They seem to think we have all kinds of amazing psy powers. AND we can intimidate big strong doctor/researchers by... gasp!... writing letters and asking logical scientific questions. We're even scarier than war zones, if Mr Wesseley is to be believed.

 

[taniaaust1]

Oh dear, was that some kind of Freudian slip? I'm sure my PR friends would NOT abandon me!

Ah, those ME Moments!

and here I was thinking you were purposely trying to be funny.

 

[Marky90]

Let us know how the IVIG fares SOC! Im trying it myself soon.. A friend of mine went from bedridden 20-24 hours a day, to 70-80 percent of her former self. She enjoyed the effects just after infusion.. it seems IVIG is the most potent infusion type, maybe because the doses are higher.

 

[Thomas]

Let us know how the IVIG fares SOC! Im trying it myself soon.. A friend of mine went from bedridden 20-24 hours a day, to 70-80 percent of her former self. She enjoyed the effects just after infusion.. it seems IVIG is the most potent infusion type, maybe because the doses are higher.

That's an astonishing recovery! Congratulations. Wish I could do it also but it's nearly impossible in Canada.

 

[SOC]

Sadly "IVIG in a couple of days" has turned into "IVIG who knows when". The insurance company is insisting on all kinds of paperwork which is going to take a while. My hematologist and Dr Klimas are both writing letters to the insurance company to explain that, yes, multiple experts do indeed firmly believe that my condition, demonstrated by lab testing, justifies the use of IVIG.

My hematologist is still confident he'll get it approved, he just has to jump through a lot of hoops for the insurance company. Meanwhile, I wait.

But at least when I went to my GP this week for yet another uti, this time I got a good course of a broad spectrum antibiotic instead of being told to go home and drink lots of water and cranberry juice. I just said, "Um... hypogammaglobulemia?" and poof! a prescription for abx appeared like magic.

I was hoping to get the first IVIG infusion while my daughter is still living at home so I have some backup, but it looks like that probably won't happen. Oh well, I'm sure I'll cope. I always do.

 

[cb2]

have you ever been given a pneumavax injection and have the immune parameters measured around that? when you mentioned your immune labs i am not sure what component you were speaking of? I had that done and it showed my immune system basically did do what it was supposed to and the immunologist said i would be a go for IVIG. seemed it would have gotten covered. that was a few years ago, i haven't tried it. i posted earlier today on another thread about it. in any case it sounds like your dr is confident he will get through the hoops! yay! i hear you about wanting a back up person- .. me too!

 

[Little Bluestem]

My hematologist is still confident he'll get it approved, he just has to jump through a lot of hoops for the insurance company. Meanwhile, I wait.

At least waiting is less strenuous that jumping.

 

[SOC]

Yay! My IVIG infusion is scheduled for June 17, next Wednesday. It appears my hematologist is indeed an excellent hoop-jumper.

I have to be there all day, which sounds boring. Hopefully I'll at least have an internet connection. I can give my PR friends a blow-by-blow:
"They've stuck a needle in my arm."
"Now I'm sitting here."
"Still sitting here."
"Now they're taking the needle out."
"Now I'm sitting here waiting to see if I have any delayed reactions."
"Still sitting here."


I'm hoping for good things from this, even if it's just not having to take antivirals and put up with URIs and UTIs all the time. With luck, I'll get even more out of it. Fingers crossed!

 

[SOC]

The first infusion is done with only minor side effects. We corrected that by reducing infusion rate and all seems fine now. I was tired or sleepy enough to go to bed when I got home mid-afternoon. That might have been from the Tylenol and IV benadryl they gave me before the IVIG.

I feel pretty good at the moment, probably from getting extra saline during the infusion. Wouldn't it be nice if we could all get topped up periodically?

The hematologist told me at our first appt a month ago that the first infusion would be half-dose and if I tolerated that we'd do a full dose a month later and then every 2-3 months after that. So I'm assuming that I did get a half dose today, although it was a whole bottle of Gammagard. Maybe a full dose is two bottles? It's all a bit confusing still.

Everyone at the infusion center was incredibly nice and helpful... incredible to a person subjected to the attitudes of most medical personnel to PWME, anyway. It was pleasant to be treated the way cancer patients are treated instead of the way ME/CFS patients are treated. Night and day.

Next appointment July 8.

 

[Ruthie24]

Glad to hear you are doing ok with the IVIG so far.

I've had 2 of the "ramp-up" doses of the SCIG and will have my first full dose tomorrow. So far, so good. Keeping my fingers crossed for both of us.

 

[Billt]

SOC please keep us posted. I have tried to get this for my son thru 2 doctors with no luck ! But I don't think they really went the extra mile for us. Glad to hear this doctor listened and is trying to help you. Maybe a good hematologist is next on our list. Take care

 

[cb2]

@SOC glad to hear you were able to get your IVIGG.!! yay! i am supposed to be going back to immunologist to get another write up for ivigg.. we'll see.

 

[Sita505]

Glad to hear you are doing ok with the IVIG so far.

I've had 2 of the "ramp-up" doses of the SCIG and will have my first full dose tomorrow. So far, so good. Keeping my fingers crossed for both of us.

Glad to hear you are doing ok with the IVIG so far.

I've had 2 of the "ramp-up" doses of the SCIG and will have my first full dose tomorrow. So far, so good. Keeping my fingers crossed for both of us.

Ruthie
I live in ABQ and am new to this forum. Sushi told me to contact you about a possible doctor referral to Mayo in Phoenix. Can you give me a name and contact information? Many thanks!
Sita

 

[Ruthie24]

Will PM you.

 

[Sita505]

Ok, thank you! BTW, do you have a knowledgeable local doctor?

Thanks, Sita

 

[SunMoonsStars]

Will PM you.

Would you pm me ascwell. I’m in Scottsdale AZ. Thank you much.

 

[SunMoonsStars]

Ok, thank you! BTW, do you have a knowledgeable local doctor?

Thanks, Sita

@Ruthie24
Ditto