• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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    Rituximab Phase III - Negative result

    Thank you for the info on the Ampligen trial. Based on the link, sounds like the research could’ve been done in a better manner and the FDA could’ve been more open minded (For lack of a better word) I had no clue about the research into a new biomarker, and I appreciate the way you explained it...
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    Rituximab Phase III - Negative result

    I'm sorry to completely change the subject, but what did people think of the Ampligen trials, especially in comparison with the Rituxan trials? Or if there's another thread I should check out, feel free to direct me (I haven't been on here much and I find it a little confusing to navigate with...
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    Seeking information on long-term outcomes with Dr. Kaufman

    Thank you!! ❤️
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    Seeking information on long-term outcomes with Dr. Kaufman

    Hi Force e Honra, I have POTS too, and some yrs back it was about your level (Although not sure it ever got to 150 - I’m really sorry, that’s rough). As my health has improved from rest, so has my POTS. But it’s still a problem that would be great to solve. Dr Kaufman put me on other meds for...
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    Seeking information on long-term outcomes with Dr. Kaufman

    I’m so incredibly glad that Dr Kaufman has been so helpful for you, especially after all you’ve gone through ❤️ I know this must be exhausting for you, so no rush in responding, but I’m curious about two things – 1. You mentioned he is helping your POTS, can you tell us more about this? 2...
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    Seeking information on long-term outcomes with Dr. Kaufman

    Thanks for taking the time to give me an honest response. Based on what you and others have written, it does sound like the antibiotics were the culprit in both cases (I still have TONS to learn about all these treatments) Dr Kaufman has worked very hard to give you your life back, and I can...
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    Seeking information on long-term outcomes with Dr. Kaufman

    @perrier @Jennifer J @Sushi Thank you so much for your kind responses! And no worries, yesterday and today were both pleasant :) I’m happy to share everything as I continue treatment with Dr Kaufman, which I’m enthusiastic about. So glad to hear that what I wrote was informative... I see...
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    Seeking information on long-term outcomes with Dr. Kaufman

    Very helpful, as Dr Kaufman has suggested me doing IVIG infusion every other week, and I’m eager to learn more about it. What worked for people, what didn’t, etc. Also interesting that we are both ANA positive, and have POTS. Several more questions – how did he help your POTS? And what is meant...
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    Seeking information on long-term outcomes with Dr. Kaufman

    @Learner1 @Sushi @Gingergrrl @perrier Here was my original response to the question of long term outcome with Dr Kaufman: “Some of my friends have been helped tremendously by Dr Kaufman. Others have been really hurt by his prescriptions.” I never meant to imply that Dr Kaufman was a mediocre...
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    Seeking information on long-term outcomes with Dr. Kaufman

    @Gingergrrl I’m really sorry to hear that about the Levaquin:heart: If you don’t mind sharing, what test results prompted high dosage IVIG? Did you do monthly/semi-monthly lower-dosage IVIG infusions prior, and respond well (or not)? And forgive me if you’ve answered these questions...
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    Seeking information on long-term outcomes with Dr. Kaufman

    As for my own response to LDN, i slept just fine but I would wake up in the mornings feeling like I hadn’t slept a wink. Id be even more exhausted than usual all day. And it kept getting worse. So I quit it. It took a couple weeks to bounce back, and then I was fine. But I know other people who...
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    Seeking information on long-term outcomes with Dr. Kaufman

    For me there were no long-term bad side effects to LDN. My friend was on antibiotics as well as LDN when he went into sharp decline, which he hasn’t recovered from years later. So it is possible it was more the antibiotics than the LDN. The IVIG was another friend, and it was high dosage (you...
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    Seeking information on long-term outcomes with Dr. Kaufman

    @perrier (Sorry, I’m a new member and still learning the ropes!) As for what people tend to benefit, that’s hard for me to say...
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    Seeking information on long-term outcomes with Dr. Kaufman

    The prescriptions which hurt people were Valcyte, LDN, numerous antibiotics for tickbourme illnesses, and IVIG. However, these have also helped other people. So I hate to scare people away from them. The only one of the above I have tried personally was LDN, and I responded poorly to it. But no...
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    If Dr. Kaufman or Dr. Chedda Have Treated You for TBD/Bartonella...

    Very curious about this too, looking forward to hearing from others as well (I am also a patient of Dr Kaufman)
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    Seeking information on long-term outcomes with Dr. Kaufman

    Some of my friends have been helped tremendously by Dr Kaufman. Others have been really hurt by his prescriptions. Some haven’t really benefitted after spending thousands of dollars. I haven’t been seeing him long enough to judge yet. He’s a very knowledgeable, intelligent, conscientious Dr...