Dr. Mikovits of the WPI to Host Live Q&A Session Regarding XMRV 22nd Jan
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DysautonomiaXMRV
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I've got POTS and XMRV - hence my username. POTS symptoms are practically identical to 'CFS'.
It will be interesting if the POTS community test positive for XMRV.
I can tell you for a fact, that people with POTS stay well out of the label and the forums on CFS due to the stigma.
How ironic that both labels (POTS & CFS) may be involved with the same pathogen. Definately in my country, POTS is hidden in ME (CFS) as a TILT test and other autonomic tests are refused by the government (thanks to the false labelling of CFS patients as hysterical). There is a real possibilty then if XMRV causes CFS it can cause POTS and hey presto - same condition?
It is quite ludicrous that one has CFS, until one has a TILT test and then the diagnosis is changed to POTS - due to hatred and disbelief of CFS patients in the medical community. In other words, the medical community refuse to accept POTS is common in CFS.
Logically many people with CFS actually have XMRV, not all, but a significant proportion. On that note, alter the words above I've written of CFS, to XMRV and everything is XMRV.
*Bingo* Retroviral link made. In other words XMRV causes many subsets of neuro/immune disease and indeed, CNS damage. Sad for us all affected and those that devote their lives to caring for us (if we are lucky) but very interesting, scientifically.
It will be interesting if the POTS community test positive for XMRV.
I can tell you for a fact, that people with POTS stay well out of the label and the forums on CFS due to the stigma.
How ironic that both labels (POTS & CFS) may be involved with the same pathogen. Definately in my country, POTS is hidden in ME (CFS) as a TILT test and other autonomic tests are refused by the government (thanks to the false labelling of CFS patients as hysterical). There is a real possibilty then if XMRV causes CFS it can cause POTS and hey presto - same condition?
It is quite ludicrous that one has CFS, until one has a TILT test and then the diagnosis is changed to POTS - due to hatred and disbelief of CFS patients in the medical community. In other words, the medical community refuse to accept POTS is common in CFS.
Logically many people with CFS actually have XMRV, not all, but a significant proportion. On that note, alter the words above I've written of CFS, to XMRV and everything is XMRV.
*Bingo* Retroviral link made. In other words XMRV causes many subsets of neuro/immune disease and indeed, CNS damage. Sad for us all affected and those that devote their lives to caring for us (if we are lucky) but very interesting, scientifically.
FernRhizome
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DysautonomiaXMRV:
I am glad you posted this! I agree 100% and in fact I've done the same myself....though actually I got my dysautonomia and CFDS diagnosis at the same time from the same doctor (Dr. Low at the Mayo Clinic) about 12 years ago. Since then they've dropped the cfs diagnosis and only give folks the POTS one! It feels like Christmas tonight getting to hear a bit about what a bunch of different researchers are up too! ~FernRhizome
I am glad you posted this! I agree 100% and in fact I've done the same myself....though actually I got my dysautonomia and CFDS diagnosis at the same time from the same doctor (Dr. Low at the Mayo Clinic) about 12 years ago. Since then they've dropped the cfs diagnosis and only give folks the POTS one! It feels like Christmas tonight getting to hear a bit about what a bunch of different researchers are up too! ~FernRhizome
hensue,
I'm curious. I see you say yuck, so i assume you wouldn't want it (have you tested yet?). The way I see it is, you're sick already. The only thing that changes by testing positive is now you know why your sick. And soon there may be ways to treat it. i'm haveing trouble understanding why people think its bad to test positive.
Could you explain your thinking to me, please? I'm just curious
I'm curious. I see you say yuck, so i assume you wouldn't want it (have you tested yet?). The way I see it is, you're sick already. The only thing that changes by testing positive is now you know why your sick. And soon there may be ways to treat it. i'm haveing trouble understanding why people think its bad to test positive.
Could you explain your thinking to me, please? I'm just curious
K
Knackered
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Yep, the point is, if you test possitive and it turns out XMRV is the cause of our illness, chances are you'll be getting better in the next few years.
leaves
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Hi Julius and Knackered
Well there is reason not to be too happy; it is not clear at all that people that are sick for a long time, and have xmrv in all their cells, will get better. As dr Mikovits suggested, the later you get treatment the worse chances you get to get better. Medicines that help in initial stages of the disease (some medicines stop only the spread of the infection) may not be helpful in the later stages. For example, there are many different hiv medicines, all working differently, we just have to hope that they find something that also helps the later stages people.
Well there is reason not to be too happy; it is not clear at all that people that are sick for a long time, and have xmrv in all their cells, will get better. As dr Mikovits suggested, the later you get treatment the worse chances you get to get better. Medicines that help in initial stages of the disease (some medicines stop only the spread of the infection) may not be helpful in the later stages. For example, there are many different hiv medicines, all working differently, we just have to hope that they find something that also helps the later stages people.
Hi DrYes,
I think she was saying that nsaids simply reduce inflamation and we may be able to prevent further damage caused by inflamation as well as symptom control. I don't think she was talking about nsaids having any great impact on underlying disease.
You are quite right that there is a problem taking them chronically but we are all in a risk/benefit situation here. If we are considering AZT, we should, for sure, find out about aspirin.
This is for you
cuz you haven't had one in a while.
link to the PDF slides from the show, takes awhile to downloadf.
http://www.wpinstitute.org/news/docs/Invest_in_ME_20090529_Mikovits.pdf
http://www.wpinstitute.org/news/docs/Invest_in_ME_20090529_Mikovits.pdf
leaves
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Hey Julius, Not necessarily, we just dont know yet. We will have to wait and not worry to much and keep our cortisol down ;-)
Funny. Truth is, after 30 yrs of worrying, I got no cortisol left.
K
Knackered
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I've had it 6 years, I hope that isn't too long, it might end up being 8-10 years by the time anything comes along to treat it, I feel awful now, I was so optimistic.
Why wouldn't they be able to treat it later on?
leaves
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yeah I agree, although 'knowing" is pretty relative here since we have no idea of the nature, treatment and implications of the disease. For me; its not that i feel much better knowing, but a bit better I think
And Knackered, sorry I really did not mean to upset you. I don't know anything about it and might be completely wrong. I'm sure they will find ways to relieve our symptoms, they are very determined to helping us.
Thanks for the link Flybro
'Knowing' what is causing me to feel sick would be a huge relief for me. Even without treatment etc.
I've had so many years of being told i'm crazy, depressed, psychotic, lazy.....the list goes on. Sometime I even start to believe it. Just having that positive test saying 'this is what you have, you can stop searching now'.
Man..that would be a relief.
This is all assuming XMRV is the culprit of course
leaves
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I hear you. I was also starting to believe all these nasty comments. However since we still are not SURE it is the cause, I find myself still doubting myself, even after having been tested positive. I guess many of us are suffering from post traumatic stress because of the way we have been treated. A test may not bring the expected relief because of that.