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    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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  1. I

    OMI - Kaufman and Chheda departure

    Luckily, I got answers to my questions! Called the new clinic and they confirmed my appointment is in Dr's schedule, but asked me to additionally call OMI and cancel there. I don't know why they don't pass the information but I did as requested. Concerning prices, I was told they were the same...
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    OMI - Kaufman and Chheda departure

    I was shocked to find out the news as I also have an appointment with dr.Kaufman on 22.06. I planned it a half a year ago for me and my son and we will travel from Ukraine in order to see him. I wrote several letters in reply to Kogelnik's mail and a separate one to Ellen. Got one reply from...
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    My Experience With Dr. Kaufman at the Open Medicine Institute

    Gingergrrl, I'm so grateful for your reply! I see myself in your case description. I have tried Valcyte (generic version) and couldn't tolerate even a tiny dose because of BP lowering. In fact, my opinion about antiviral treatment is unstable, varying from "You should start Valcyte ASAP" to...
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    My Experience With Dr. Kaufman at the Open Medicine Institute

    Hi everybody, I'm going to visit dr. Kaufman next year. This is a long way for me, maybe Belgium is even nearer, but I somehow trust dr.K more. The only big question I have is whether he specializes in autoimmune issues. The inflammation I'm suffering from now is due to proinflammatory cytokines...
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    High heart rate during night and in morning

    I have the same, but it was triggered by high dose of B12. I'm ok during the day but usually get up at night because of heart racing and those palpitations. Cardiologist didn't find anything, but told to look at K/Mg/Na ratio in the blood. It's clear for me that I need K and I get better on it...
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    Starting Freddd's protocol - a few questions

    @Kitsune, Than you for your answer and Caledonia's text. I remember reading this and that flushing thing stopped me from trying to take it because I live with this flushing due to autoimmune disorders. When I took a capsule of B-group vitamins (Pure encapsulations) that contains niacin in it it...
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    Starting Freddd's protocol - a few questions

    Hi, guys, Did someone try to use Niacin to turn down the methylation or whatever it is that causes a bunch of symptoms? I took only 1 pill of MB12 a month ago! and heart palpitations / tachycardia do not go away! They started a few hours later I took that cursed pill and I couldn't sleep...
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    Generic Valcyte: start or not?

    Well, took a tiny dose yesterday, with fat meal, but today i have been a zombie... Dizziness, nausea and yes, low blood pressure again (((
  9. I

    Generic Valcyte: start or not?

    @zzz, Thank you for such a detailed answer! Will restart at a lower dose today and see whether the antidote feature works with me.
  10. I

    Equilibrant -- can auto immune people take it?

    Yes, it is speculation. I had never had gluten intolerance before I started treatment with high doses of interferon as prescribed by a doctor...
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    Equilibrant -- can auto immune people take it?

    @el_squared, Could you please give the link to this site? I would like to ask a question as well. My Celiac and MCAS were both triggered by interferon injections. It's interesting to know whether they could be reversible if treated with equilibrant Thank you!
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    Generic Valcyte: start or not?

    I stopped the drug and this symptom doesn't abate. I have had low blood pressure all my life but not to the extent I nearly fall down and cannot hear well. So, based on what you explained, should I leave hopes on this drug even in small doses? Does this mean it will not work if such a reaction...
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    Generic Valcyte: start or not?

    I experimented a couple of days with going off my low-dose Valcyte to see whether it was responsible for extreme lowering of my blood pressure. Now I can say for sure that yes. It's strange but Valcyte does cause my pressure to drop and nothing is helpful. I drink a lot of water, coffee and...
  14. I

    Generic Valcyte: start or not?

    Probably not sufficient to treat HHV6, but could be enough to make immune system work correctly and reduce inflammation.
  15. I

    Generic Valcyte: start or not?

    Redaxe, zzz, Thanks for your comments, I specifically focus on autoimmune effects of Valcyte, since the disorders I have cause the majority of awful symptoms which do not allow living normally. HHV-6 had not been attacking me every day before. Every now and then I would fight with headaches...
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    Generic Valcyte: start or not?

    Hi, redaxe, I completely agree with you about the drugs. It's after a very high dose of interferons that I got worse and worse. That "doctor" prescribes them to everyone regardless of the virus type. I trusted him and now I don't trust anyone, even the most famous and praised doctors. Actually...
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    Generic Valcyte: start or not?

    Yes, I have read almost everything oh HHV6-foundation, but have to admit this forum contains more useful and practical info. Among the other treatments with mininal side effects it is possible to try Artemisinin. Other stuff is highly toxical and is available only in the hospital. My 12-year old...
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    Generic Valcyte: start or not?

    Yes, I have HHV 6 high titres in blood by PCR (probably chromosomally integrated) and CMV high antibodies (the latter has not been detected in blood serum by PCR). So, probably i feel better on famvir because it's fighting CMV, but I don't think it could significantly lower HHV6. OI is something...
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    Generic Valcyte: start or not?

    SOC, thank you for your opinion! Just thinking about being on famvir until something better comes up, like brincidofovir. Of course I will survive without Valcyte, but the quality of life is in question... I feel bad most of the time but my case is still mild. If I still work 5 days a week...
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    Generic Valcyte: start or not?

    Hi everyone, I'm still not on Valcyte because I'm afraid to take it. My present doc is not against my taking it but I see he knows nothing about this drug. Neutropenia is what frightens me most. Before you get the blood tests done and get to see the doc you can possibly pass out. After checking...
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    Generic Valcyte: start or not?

    Hi, @SOC. I've read a lot of your posts and know about your and your daughter's experience with Valcyte. Your story was also inspiring for me. Can you give me the names of the iv immunoglobulins you're getting, please? Our local version is "Bioven", but I know of better variants like "Gamunex"...
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    Generic Valcyte: start or not?

    Thank you, JAH, My greatest fear is that my autoimmune reaction could be irreversible. The doc is not so pessimistic and says he knows how to make immune system work correctly. Rich's protocol contains folinic acid which made me sick, so maybe he's right. I find Freddd's plan be suitable. A...
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    Generic Valcyte: start or not?

    I am in Ukraine, not in the UK, where these studies are running.
  24. I

    Generic Valcyte: start or not?

    Good morning and thank you all for your answers! They were really helpful. I've recently seen a so-called "chief immunologist of Ukraine". He is a rather sceptical man, but was open to my treatment ideas. As my major symptom is muscles pain all over the body and low graded fever he asked for...
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    Generic Valcyte: start or not?

    Hi Valentijn and ukxmrv, Thank you for your replies. I plan to see one but have heard he is against Valcyte also. May go for Famvir though. I tried Famvir, not for a long period of time, cause it's expensive here. Did well on it but only while being on it. Then all the symptoms returned.
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    Generic Valcyte: start or not?

    Can you give an example of someone who has experienced serious problems from Valcyte? As for me, I think I am already determined to take it, but still looking for at least private doc to monitor my labs.
  27. I

    Generic Valcyte: start or not?

    I came for people's experience rather than advice
  28. I

    Generic Valcyte: start or not?

    I understand that, but no one is willing to go down the Valcyte road here. I have visited numerous doctors each defending his own strategy through experiments on my health. I've tried a lot of stuff but not improving. Doctors are saying that Valcyte is for HIV and those who prescribe it are not...
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    Generic Valcyte: start or not?

    Hi everyone, My name is Kate and I'm from Ukraine. I've been suffering from CFS for 16 years and I believe that the underlying cause of it is my chronically active HHV 6 (high titres by PCR DNA). In 2013 I eventually found a doctor who I thought would lead me to cure, but instead I started...