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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?
     
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  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
     
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  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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  7. ivorin

    ivorin Senior Member

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    Okay, so I'm in California. Dr. Kaufman had me test for MCAS, the Cunningham panel and Small Fibre Neuropathy for now. He started me on Valacyclovir (antiviral), Rifaximin (SIBO), Allegra, Zantac and Zyrtec (MCAS) before the tests arrived. I haven't felt any benefit or detriment for now. I guess it may take some time. I don't personally think I have MCAS so it's not a surprise that the meds for it do nothing for me.

    My Cunningham panel came back yesterday with 3 out of 5 antibodies positive. Dr. K said we need to talk about it tomorrow when I'm seeing him again. I'm expecting he will want to start something along the lines of IVIG and/or RTX, we will see. I don't know what will happen, but this is more or less my last real hope before we have any future research, so fingers crossed.
     
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  8. Learner1

    Learner1 Professional Patient

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    That's great that something was found! I'm sure he will find ways to help you!

    Be patient, though. Getting well will take time and there no instant fix. He said he thought I had MCAS, and I was skeptical, but he was proven right 3 months later.
     
  9. Gingergrrl

    Gingergrrl Senior Member

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    Welcome to California! How long will you be here? I'd find a way to say hi if you were not seven hours north of me!

    Please keep us posted and when I started with Dr. K, we tried several things that did not help until we found my current treatments so the first thing you try might not be "the one". I know he will do everything humanly possible to figure out how best to help you and you are in good hands.
     
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  10. Diwi9

    Diwi9 Senior Member

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    @ivorin - I'm so happy for you that you made it to CA! Keep us updated.
     
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  11. cb2

    cb2 Senior Member

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    How many times have you seen him so far? sounds like he is chipping away at things and that is great! mind if i ask why he picked valtrex and how much he started you on? how often will you be seeing him? I hope everything works out and you feel better soon! I look forward to reading your updates :)
     
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  12. ivorin

    ivorin Senior Member

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    How was he proven right? The test results or your response to meds? I'm only skeptical about the MCAS to be honest, even though I really want him to be right.
     
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  13. ivorin

    ivorin Senior Member

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    I've seen him once, but he took a long time going through my large existing lab results documentation, that's where he got his conclusions from. I'm seeing him again today, and we will talk about the first results and what else we need to do, I'll keep you posted.

    He chose Valtrex because both my onsets started with a herpes simplex infection. I'm on 1g 3 times per day.
     
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  14. ivorin

    ivorin Senior Member

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    @Gingergrrl I'm staying at least a month, or until we've found something that helps me and can be continued. I am very scared we won't find anything. I'm not sure I can handle coming back to Croatia with my state unchanged. I really hope we figure my case out.
     
  15. Learner1

    Learner1 Professional Patient

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    Elevated Chromagranin A and Prostaglandin D2. I was skeptical, too, but he was right.

    Apparently, my symptoms had been well controlled by my functional medicine doctor who'd recognized it in the background, and given me significant doses of folate, methyl B12, pantothenic acid (B5), vitamin C and curcumin all along, which help mast cells.

    Starting IVIG set off my MCAS symptoms dramatically, so I had to increase B5 and curcumin, and then added boswellia, ketotifen, fexofenadine, and benadryl around my IVIG infusions, which has successfully reduced my symptoms.
     
  16. ivorin

    ivorin Senior Member

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    That's really interesting, thanks for sharing this :)
     
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  17. bspg

    bspg Plant Queen

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    @ivorin I've been reading this thread off and on and I'm so happy to hear you've made it to CA and are seeing Dr. Kaufman! :D

    I'm a fairly new patient of his and am also curious about the long term outcomes of others under his care.

    He diagnosed me with MCAS too, based on symptoms and the fact that I seemed to get worse whenever I stopped using Claritin for seasonal allergies. I also thought MCAS was not an issue for me but I've seen a lot of improvement after being on MCAS meds for a few months now.

    It may take awhile to figure out the right combination of treatments (or to see any improvements) but I'm confident that Dr. K will be able to help you somehow. Please don't give up. :star:
     
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  18. bostjan01

    bostjan01

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    Hi I'm from Slovenia and also considering going to dr. Kaufman. I've been sick for 7 years and tried treating possible Lyme, mold toxicity, adressing nutrient deficiencies, methylation protocol, excluding IgG allergies from diet, detox protocols, gaps diet and many other things. Nothing of these things worked for me now.

    I'm wondering though roughly how much would an appointment and treatment cost? I'm also wondering if I can find what kinds of treatments does dr. kaufman?
     
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  19. Gingergrrl

    Gingergrrl Senior Member

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    There is really no way to predict what the treatment would be b/c it depends on what he finds. I have been his patient since mid 2014 and I have several close friends who are also his patients and our treatments are completely different with almost no overlap. One is being treated for Lyme and co-infections (which I do not have) and another is being treated for EDS (which I do not have) but I overlap with one of them b/c we both have POTS and MCAS, yet we have them for different reasons.

    I am doing Rituximab but this is not even being considered re: the two friends that I mentioned b/c I have B-cell driven auto-antibodies and they do not. He also finds and treats SIBO in many patients but I was negative for SIBO. He uses anti-virals and antibiotics when needed as well as IVIG when needed (for both immune deficiency and/or auto-immunity). He also treats MCAS and allergic reactions. I have no idea what it would cost without US health insurance. The office visits and phone consults are private pay (for everyone) but the testing, meds, treatments, etc, are covered by US health insurance in most cases. I have no idea how this would work coming from another country.
     
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  20. pibee

    pibee Senior Member

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    Gingergrrl, do you maybe know what kind of treatment they get for EDS, and what kind of trt for Lyme, I read somewhere Dr K is not really into chronic Lyme theories? is this true? how long he treats their lyme?
    i know he is more focused on bartonella. In my case this seems true, bartonella is still here I'd bet. .
     
    Last edited: Dec 26, 2017

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