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Seeking information on long-term outcomes with Dr. Kaufman

Discussion in 'ME/CFS Doctors' started by ivorin, Oct 25, 2017.

  1. Learner1

    Learner1 Professional Patient

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    I have the same doc as Gingergrrl, and I'm on .75g/kg of IVIG fed at 100 - I can't go any faster. I'm on a higher "autoimmune dose" but some folks around here are on even higher doses.

    Yours does sound very low. Who prescribed it and why?
     
  2. cb2

    cb2 Senior Member

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    @Learner1 point 75g or 75grams? it must be 75 grams. ? my primary infectious disease dr rx'd .. i flunked the pneuam vax challange and we were using antibiotics often, her goal is to get my immune system stronger so i dont get so many infections. also i guess i have what is called common variable immune difinecy ? sorry about the typos i am really wiped out. i will find out tomrrow and thursday how i did with the 100 today.. last time i was at 85 time before that 100, but i got really sick neauseated. dr has given me some anti neasua meds. do you all take this too? what happens when you go over 100 ?

    also dr bonilla told me to better pace myself. the curious thing is I was doing light weight training for years a few times a week.. last year i messed up my neck and i haven' t been able to do any weight training.. so i am hardly doing anything anymore.. and i am going down hill quickly not exercising. i wondering what dr k's take is on exercise?

    again sorry for the typos.. i am super tired and sitting in the center with the cancer folks is sad to me. thanks
     
  3. Learner1

    Learner1 Professional Patient

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    .75g/kg.

    So, if you weigh 70 kg, then 70x .75=52g.

    I have CVID, too, but also autoimmune antibodies.
    I get fexofenadine, Solumedrol, benadryl, and naproxen with it. Ondansetron and hemp oil for nausea, and Benadryl, dexamethasone, curcumin, boswellia, and naproxen after.

    I don't go above 100.
    I lift weights carefully... Don't overdo it.
    At least they know what they're fighting...LOL:rofl:

    (I've been in their shoes...that was easier...)
     
    Last edited: Nov 8, 2017
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  4. Gingergrrl

    Gingergrrl Senior Member

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    I've explained my entire mold history in threads on PR over the last two years. Let me know if you can't find it in a Google site search and I'll find one of the threads and give you a link (in the next few days as soon as I can).

    I get 82 grams in a three day split dose and my infusion speed is 40 (not joking!) b/c I am a risk of allergic reaction, third spacing, and pulmonary edema with fast infusion speeds, plus IVIG is a very think substance and the slower speed reduces the risk of aseptic meningitis and blood clots.
     
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  5. cb2

    cb2 Senior Member

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    Thank you @Learner1 and @Gingergrrl . this is very helpful.
    I really like the idea of taking them slowly .. the most i have gotten to is 100 ... but looks like i need more like 60grams.. i am going to be doing the infusions every 3 weeks i guess so that will bump me up to 30 grams a month instead of 15.. overall.sort of
    I think I should maybe start a new post so I dont snag this one? has the IV IGG helped you all? I have been doing it since May 2017 and my igg levels are up to about 950. in Oct i developed horrible diarrhea the day following the infusion it was quite painful and terrible odor and chills (sorry for the details) i thought perhaps it was due to changing my thyroid meds 3 weeks earlier..so i lowered them 2 weeks ago and am still having the GI issues, had infusion this past Tuesday and horrible diarrhea again yesterday..living on emodium. the nurse at the infusion center advocated for me and called the dr, she thought maybe i have some kind of infection. is this anything anyone else has experienced? thanks

    ps before infusion dr has them give me , benedryl, tylenol, 40mg cortef ( i usually take 30 a day), and pepsid or something like that.. last few times i had been getting neasua a couple days following so know i have an rx for Ondansetron.. but i like the idea of Hemp oil.. is that the same as CBD ?

    I will look up your mold thread @Gingergrrl in the next few days.. i have to take things very slowly sometimes. also should i start a new thread?

    thanks for the support
     
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  6. Gingergrrl

    Gingergrrl Senior Member

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    Happy to help and just finished my 3-day cycle of IVIG yesterday. The slow infusion speed is absolutely critical for me and my max speed for IVIG is 40 and no chance I would tolerate 100.

    It has helped me significantly and I have been doing IVIG since July 2016.

    I have never gotten diarrhea from IVIG but I get other side effects: headache, neck stiffness, muscle pain, and sometimes chills, and low grade fever (or feel feverish yet my temp is still it's normal 97).

    My IVIG pre-meds are Atarax, Tylenol, and Pepcid. (Most people take Benadryl but I do better with Atarax).

    I think it's better to start a new thread or send me a PM if it's about mold so we don't take this further off-track ;)
     
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