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Author Topic: Virus linked to chronic fatigue syndrome  (Read 3569 times)

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Offline madbrain

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Virus linked to chronic fatigue syndrome
« on: March 28, 2010, 02:09:52 PM »
http://www.npr.org/templates/story/story.php?storyId=113613955

Has anyone heard of XRMV before ?

I find this particularly interesting/relevant in my case since I have suffered severe fatigue for extended periods, despite very low levels of HIV. The XRMV is a retrovirus, and the article speculates that HIV drugs might work against it too. I wonder if this is why the HIV drugs seem to have eliminated my fatigue overnight.

Offline veritas

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Re: Virus linked to chronic fatigue syndrome
« Reply #1 on: March 28, 2010, 02:23:14 PM »

I have heard about it, however, I never knew anyone who had it. See this Q&A:

http://wpinstitute.org/xmrv/xmrv_qa.html

The Q&A seems pretty comprehensive.

v

Offline mecch

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Re: Virus linked to chronic fatigue syndrome
« Reply #2 on: March 28, 2010, 04:56:07 PM »
http://www.npr.org/templates/story/story.php?storyId=113613955

Has anyone heard of XRMV before ?

I find this particularly interesting/relevant in my case since I have suffered severe fatigue for extended periods, despite very low levels of HIV. The XRMV is a retrovirus, and the article speculates that HIV drugs might work against it too. I wonder if this is why the HIV drugs seem to have eliminated my fatigue overnight.

Hey I thought you were a LTNP - i didn't realise that you started HAART.

Supposedly there is some kind of CDC scandal that they knew about virus link to CFS and did nothing for years. Anyone heard of that?  I had it in the 80's.  And once in the 90's. I was diagnosed and everything. THen in Europe, the doctors said what a load of American bunk, CFS doesn't exist.
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline madbrain

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Re: Virus linked to chronic fatigue syndrome
« Reply #3 on: March 28, 2010, 08:57:49 PM »
Hey I thought you were a LTNP - i didn't realise that you started HAART.

I was a viremic controller, not LTNP. But I started HAART due to symptoms.

Quote
Supposedly there is some kind of CDC scandal that they knew about virus link to CFS and did nothing for years. Anyone heard of that? 

No. But I think there may be more than one virus linked to CFS. Epstein Barr, CMV and a few others.

Offline mecch

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Re: Virus linked to chronic fatigue syndrome
« Reply #4 on: March 29, 2010, 03:03:19 AM »
In the 80's and 90's they diagnosed it with EBV titers in my case. But actually the times did an article about the retro virus last year. let me see if i can find it.
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline stealthy81

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Re: Virus linked to chronic fatigue syndrome
« Reply #5 on: March 29, 2010, 02:13:57 PM »
I was a viremic controller, not LTNP. But I started HAART due to symptoms.

[...]


Hi, Madbrain!
What kind of "symptoms", please? Were they HIV-related for sure? Thank you! ;)

Offline betonet

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Re: Virus linked to chronic fatigue syndrome
« Reply #6 on: March 29, 2010, 03:35:53 PM »
Madbrain haven't spoken with you for a long time, mate. Why started HAART width CD4 - 626?

With your last results - 2/24/2010 CD4 626 34% VL 332 they were one of the best since you are infected as I see in your signature. Now with the meds did you stop all the supplements you take?

About fatigue I have chronic one too all the time, but I think it's HIV related.

Cheers
Dec 2008 - diagnosed +
Jan 2009  CD4 550  CD4% ??  VL 40 000
Feb 2009  CD4 330  CD4% 18  VL Unknown
Apr 2009  CD4 406  CD4% 20  VL Unknown
May 2009  CD4 380  CD4% ??  VL 27 000
June 2009 CD4 395  CD4% ??  VL Unknown
Sept 2009 CD4 344  CD4% ??  VL 44 000
Jan   2010 CD4 397  CD4% ??  VL 250 000
May  2010 CD4 370  CD4% 16  VL 750 000
Aug 2010 CD4 385  CD4% 14  VL Unknown
Dec 2010 CD4 315  CD4% ??  VL Unknown
Jan 2010 CD4 285 CD4% ?? VL Unknown
No meds yet

Offline madbrain

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Re: Virus linked to chronic fatigue syndrome
« Reply #7 on: March 29, 2010, 04:21:42 PM »
Madbrain haven't spoken with you for a long time, mate. Why started HAART width CD4 - 626?

With your last results - 2/24/2010 CD4 626 34% VL 332 they were one of the best since you are infected as I see in your signature.

Yes, I know they were some of the best results. Unfortunately I also felt very bad. See this thread as to why : http://forums.poz.com/index.php?topic=31603.0

Quote
Now with the meds did you stop all the supplements you take?

For now I have stopped most of them. I am restarting some of them progressively.
There may be some that I won't restart (herbal ones) due to possible interactions with HAART, but I'm not sure yet. That depends on what my doctor says.

Quote
About fatigue I have chronic one too all the time, but I think it's HIV related.

That's what I think it was in my case, and it was intolerable. Sometimes the lab numbers just don't tell the whole story.

Offline madbrain

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Re: Virus linked to chronic fatigue syndrome
« Reply #8 on: March 29, 2010, 04:24:00 PM »
Hi, Madbrain!
What kind of "symptoms", please? Were they HIV-related for sure? Thank you! ;)

Fatigue.
See this thread : http://forums.poz.com/index.php?topic=31603.0

And no, they were not confirmed to be HIV-related. However my doctor ran a lot of other tests and everything else was normal. By elimination, there wasn't anything left but HIV to suspect as the root cause. I think that suspicion was correct because I haven't had it again since starting HAART. It has only been about 3 weeks but it is very encouraging to me. In the week before I started it I had a lot of fatigue.

Offline mecch

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Re: Virus linked to chronic fatigue syndrome
« Reply #9 on: March 29, 2010, 07:56:19 PM »
http://www.nytimes.com/2009/10/09/health/research/09virus.html

That was story back in Oct.  Plus there was an expert who took questions from readers.

I was always hundred percent sure my CFS was a virus and like other peoples herpes, etc, it seemed to be stress related to me. There was an emotional component in that stress was emotional as much as physical. It was extremely hard to deal with but after the first time I realised it was mind over body.  Cutting out physical and emotional stress, and everyday gradually building back stamina.  This could take a month or more before I was functional. I would have drenching sweats during the process, and swollen glands. They tested me all the time for HIV back then, too, but of course it never was that.  

CFS is its own disease and maybe someday we'll figure out generally how to treat it, though I figured it out myself how to get over it.  

With all due respects madbrain, your shared experiences with supplementation seem to indicate OCD tendancies.  Maybe you've got too much stress, trying to take on or control too much, rather than just living and being relaxed about some things. Now that you are on HAART, maybe you can let slide a good chunk of all that world of supplements that was undoubtedly taking up so much time and attention. You had the cost of your pills worked out to the penny, you had all that knowledge and referencing and researching to get your regime.  But really there must be a more relaxing and rewarding way to spend brain power if you breathe a sigh of relief that HAART is going to take care of your HIV challenge.
« Last Edit: March 29, 2010, 08:02:02 PM by mecch »
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline madbrain

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Re: Virus linked to chronic fatigue syndrome
« Reply #10 on: March 29, 2010, 09:06:55 PM »
mecch,

http://www.nytimes.com/2009/10/09/health/research/09virus.html

That was story back in Oct.  Plus there was an expert who took questions from readers.

I wish I had seen it back then.

Quote
With all due respects madbrain, your shared experiences with supplementation seem to indicate OCD tendancies.  Maybe you've got too much stress, trying to take on or control too much, rather than just living and being relaxed about some things. Now that you are on HAART, maybe you can let slide a good chunk of all that world of supplements that was undoubtedly taking up so much time and attention. You had the cost of your pills worked out to the penny, you had all that knowledge and referencing and researching to get your regime.  But really there must be a more relaxing and rewarding way to spend brain power if you breathe a sigh of relief that HAART is going to take care of your HIV challenge.

Well, I have never been diagnosed with OCD, and I think I would have by now given how closely I am followed if that was it. I think there is a difference between being organized and OCD. As far as supplementation goes, I have one year's supply left (purchased in january), so I think I will still continue many of them. When it comes time to renew - and it will be a while - I may have a lighter regimen. But there are some that I am sure to continue long-term such as vitamin D, calcium (because of side effects from meds including HAART), multi, omega-3.
As far as the time spent on them, it is about 1.5 hours per month to refill the 2 daily vials, and a few hours every year at ordering time. It's not that huge of an ongoing time sink - unlike researching them in the past was.

Regarding stress, yes, I have a significant amount of it in my life, but I don't think it's more than most people with HIV do. And I cannot account for that stress being responsible for my fatigue. Neither could my regular therapist - she could not make sense of it.

Offline mecch

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Re: Virus linked to chronic fatigue syndrome
« Reply #11 on: March 29, 2010, 11:23:57 PM »
My HIV doc referred my recent fatique to my shrink. She can't figure it out and referred me to a neurologist. Well see what he says. I am rather convinced once again I'll beat it like I beat CFS.  Mind over body. 

Unless you can locate a HIGHLY knowledgeable CFS specialist to treat you, I wouldn't go down that route as explanation and cure.  Just my experience and gut feeling.  The same with Lyme.  And lead fillings, and so on.

Sooner or later has to be mind over body.  Lance Amstrong came back from cancer to win Tours de France from principally training and willpower.  The doctors take care of the required medicine.

I'm glad you're on HAART. I am guessing you will see spectacular normalicy.
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline madbrain

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Re: Virus linked to chronic fatigue syndrome
« Reply #12 on: March 30, 2010, 02:30:38 AM »
My HIV doc referred my recent fatique to my shrink.

That's what mine did 3 years ago too when I had a long episode of dizzy spells. But I think it was more physiological than mental. Then one day it just stopped suddenly.

Quote
She can't figure it out and referred me to a neurologist. Well see what he says. I am rather convinced once again I'll beat it like I beat CFS.  Mind over body. 

Lucky you to be able to get over it. I was reading the discussion threads with the article, and it seems most of the posters there don't.

Quote
I'm glad you're on HAART. I am guessing you will see spectacular normalicy.

I hope so, but right now I'm seeing spectacular nausea :(

Offline Inchlingblue

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Re: Virus linked to chronic fatigue syndrome
« Reply #13 on: April 02, 2010, 02:15:52 PM »
Isentress (and a few other HIV drugs, including an experimental integrase inhibitor) block XRMV:

http://forums.poz.com/index.php?topic=32030.0

 


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