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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 (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Search results

  1. N

    Swallowing

    I've twice in six years had my esophagus expanded by my Gastro, easy procedure, good for five years or so, consists of a light sedative and inserting a large urethane (rubber) cucumber and stretching/returning the tissue to a nomal state.
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    C. pneumonia, clarithromycin, and probiotics

    I took Clarithromycin (Biaxin) for about six months, prescribed for chronic Lyme. I can tell you that it was 100% the cause of the worst insomnia imaginable, not an uncommon complaint. Check out this link for consumer reviews of this drug and others...
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    Antiretroviral Trial

    probably right on the three months, I will continue on the Valcyte for a couple more months, its not been too bad. My CMV numbers dropped below the positive base line, I believe that was 0.9 so I stopped taking Famvir. I'm so up and down its hard to come to any real conclusions, today I came...
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    Antiretroviral Trial

    Sue, Yes it was the new serology test, I got the results last week and was wondering has anyone tested positive that was on AV's. It seems as though a lot of people are coming back neg. for serology and positive for culture. I think the AV's ( Valcyte, Immunivor ) I dropped Famvir, have...
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    XMRV neg. serology w/av's

    I just got my results back from VIPdx (negative) after being on AV's for two months before the blood draw, has anyone here tested positive for XMRV while being on AV's? Regards, Roger
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    Antiretroviral Trial

    Great news for you Sue, I just got my results also, negative, I had been on AV's for about two months before the blood draw, if memory serves me, you were also, is that correct? I'm kind of concerned what effect av's may have had on the test. Best, Roger
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    Please Tell Me Your Valtrex + Valcyte Story

    Alice, The determination to continue on current meds will be made at some point with myself and my PCP. As for Valcyte, I will try it for another month or so @ 900mg. If this is well tolerated and I don't feel completely wrung out, I may consider continuing. A lot is dependent on blood work and...
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    Valcyte (plus) Update

    Alice, I said I would keep you posted on my Valcyte treatment and so today I cut back to 900mg. a couple of days early. I was beginning to feel really fatigued and felt it may be from the Valcyte. One more comment, since no one knows for sure what causes CFS, if it is a retrovirus like XMRV or...
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    Please Tell Me Your Valtrex + Valcyte Story

    Alice, My whole story like yours, starts way back probably fifteen years with a classic Lyme/misdiagnosed case. Extreme Arrhythmia, extreme joint pain, eye problems, but Lyme was just coming to Virginia and mostly overlooked. It was only found by my family physician 18 months ago after a...
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    Please Tell Me Your Valtrex + Valcyte Story

    Alice, As to how sick I was, somewhere around 6 or 7 months ago like alot of people here, I became suddenly ill. It seemed like a terrible case of the flu, then ratcheted downward from there. Four months ago I was taking three naps a day, spending 8-10 hrs a night in bed and could barely keep...
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    Please Tell Me Your Valtrex + Valcyte Story

    Maryb, I also tried Valtrex and absolutely hated it, made me feel awful, and the Valcyte and Famvir seem more tolerable. I did have a 4-5 day period when increasing the Valcyte of severe eye redness each time, CMV? best roger
  12. N

    Please Tell Me Your Valtrex + Valcyte Story

    Maryb, About two months on Famvir and Immunivor altogether and I also did about a week on Valcyte before clearing. The treatment is is very confusing at best, all the ID docs I saw (3) said it would clear on its own but I wanted to do something more aggressive. My family doc put me on the...
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    Please Tell Me Your Valtrex + Valcyte Story

    Heaps, My understanding is that you need to get the viral load low enough that your immune system can keep it in latency. For me, my EBV has already returned to that state and I will find out Tues. or Wed. about HHV-6 and CMV. Lyme also is showing only one band positive. And as far as the...
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    Please Tell Me Your Valtrex + Valcyte Story

    Alice, I'm also taking Valcyte (three weeks 1800mg daily) an Famvir (twice daily). I ramped up slowly with Valcyte starting with one a day for a week, two a day for a week, and so on till I'm taking four a day for three weeks. I'm positive for Lyme, EBV, CMV HHV-6, all active infections but...
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    mmm nothing is simple

    Heaps, I'm thinkin Valcyte may be to these co-infections as Kryptonite is to Superman, I think you gotta do it. Best, Roger
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    VIPDx Serology (Antibody) Test Results Yet?

    I give up, a simple posting on their very limited web site could have addressed all the concerns. Why be defensive or apologetic? The medical industry should be held to a higher standard than your local Jiffy Lube.
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    VIPDx Serology (Antibody) Test Results Yet?

    OK, I give up, but why for some reason does the medical community seem to be held to a different standard than any other business? They actually take the trouble to answer the phones? Answer an email, gee, thats sounds like quite the business model. It is business, nothing more, nothing less.
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    VIPDx Serology (Antibody) Test Results Yet?

    I would be willing to bet patients make up 99% of their customer base, an blanket email would not be to much trouble, and personally, I'm tired of humbling myself to the medical community, they really are there to provide a for fee service, nothing more.
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    VIPDx Serology (Antibody) Test Results Yet?

    Hi everybody, I too await my results and I must say you are being way to kind. An email update to all that submitted samples should be a minimum, furthermore, if most business's operated like VIPdx they would dead in the water. Remember, this is a "for profit" service industry business, not...
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    Famvir hhv6

    Yea your right about everything, I sent off to VIP for serology testing for xmrv when they first started testing, I have not heard a peep, I'm not sure I want to, it just seems like, why bother to add to the I'm already screwed list. UPDATE : I cannot believe the progress I continue to...
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    Famvir hhv6

    Sticking with it Heaps is a good idea until the next silver bullet comes along, then I'll probably jump on that train. The shot of B 12 yesterday seems to have helped, which is a small positive, but how many months can you continue to take all this medication? But still, you feel like at least...
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    Famvir hhv6

    Hi everybody, I spoke with my PCP this evening and he agreed that 18 months on Valcyte was reasonable, YUUUUUUUUKKKKKk, but it if helps, I'll do it. Also, he started weekly shots in me butt cheek of B-12, the other one gets Rocephin weekly, ooooooooouch. I don't know what else I can do. I take...
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    Famvir hhv6

    This really stinks, so many people have the same symptoms, right? common complaints with the up again and down again cadence of the illness. How can it be so many things and have so many varied opinions? There has to be one common denominator causing such similar symptoms. I plan to continue...
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    Famvir hhv6

    Lisa, Thats mind wrenching, a year? I planned on maybe two months of Valcyte, (three weeks at 1800mg.) 900mg. rest, and I also take 500mg Famvir, Immunivor and trans Factor 200 and draino. 3 antibiotics. misc. supplements. Anybody selling crack cocaine? roger
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    Famvir hhv6

    Hi Michele, I'm on 250mg twice a day, how long will you be on 500mg three times daily? p.s. since my last post I kind of crashed and burned, gotta love it. Best, Roger
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    Famvir hhv6

    Okay, but I don't get it with insurance/gov. health care coverage, what difference does the infections' origin make? If you have CMV it sure seems that the treatment wouldn't differ, Valcyte is label approved here in the US only for CMV, at least that the way I read it. Good Luck,
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    Famvir hhv6

    Hi Michelle, if your insurance co. will pay, that's a Wow. Mine does one time and then bitches the next refusing to pay saying they are already paying for an antiviral (Famvir). So, make sure they will pay for both and be prepared to pay for one. If you have to make this choice as I did, choose...
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    Famvir hhv6

    Heaps, The Famvir worked well for me also, but when I began Valcyte both of my eyes turned vampire red for about a week, then cleared. When I increased the dose to a 4 tabs 1800Mg. daily, same thing happened, then cleared and now I'm probably as well as I felt in years. I truly think it was...
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    Famvir hhv6

    Michelle, Valcyte after a couple of weeks has worked miracles for the red eyes. (CMV) I posted to you what else I take, the red eyes go back 12 years, this has been the first real improvement. I think its the CMV. Best, Roger