Is it a new disease or its CFS ?

Overstressed

Overstressed

Senior Member
Messages
406
Location
Belgium
Hip said:
HTLV is completely out of the question. HTLV could not possibly the Chinese "HIV-like" virus, because:

• HTLV has an incubation period of 30 years (ie, 30 years before the first HTLV symptoms appear after contracting HTLV). Whereas reports of contracting the Chinese "HIV-like" virus from kissing prostitutes or dates suggest an incubation period of two days, or at most a week. Enormous difference.

• HTLV is not spread by saliva, as the Chinese "HIV-like" virus is.

• The symptoms of the Chinese "HIV-like" virus are different to those of HTLV. HTLV does not cause severe chronic chest pain, or extreme anxiety symptoms, for example.
Click to expand...

Hi Hip,

You might be right on the Chinese virus, but not on HTLV. HTLV does cause autoimmune issues, there are papers describing Hashimoto's and HTLV, and these symptoms pop-up much sooner. There are cases of fibromyalgia and HTLV. The latency you describe, is when a subset of people get cancer.

And now back to the Chinese virus :)

Best wishes,
OS.
 
S

Sherezade

Messages
97
R
ronR said:
www.thailandguru.com/hiv-aids-thailand.html

Heterosexual Transmission in Thailand: HIV Subtype E in Thailand,

INTERESTING READ - just found out
Click to expand...

Ron, with all due respect, I don't see the point of bringing here that link with rare strains of hiv. I assume that we all have negative hiv tests, and we have accepted already that what we have is not hiv. I assume too, that the current tests are able to pick all the strains of hiv. So, obssesing over a virus we don't have, thank God, is not helpful for anyone. I had enough already of the hiv scare. Really.

Please, don't take my comment as I'm attacking you. That's not my intention. Just saying this, because for some people has been hard enough to accept they are hiv negative, and I wouldn't want to raise doubts again. Thank you, and I hope you can get what I'm saying.
 
Hip

Hip

Senior Member
Messages
18,116
Overstressed said:
Hi Hip,

You might be right on the Chinese virus, but not on HTLV. HTLV does cause autoimmune issues, there are papers describing Hashimoto's and HTLV, and these symptoms pop-up much sooner. There are cases of fibromyalgia and HTLV. The latency you describe, is when a subset of people get cancer.
Click to expand...

If you have any links to papers on this faster onset of symptoms you mention, I'd be grateful. I know that HTLV can cause ME/CFS too, but I was under the impression that the incubation period for this was also several decades. Many people of course contract HTLV as an infant, as this virus is passed by breast feeding.
 
Overstressed

Overstressed

Senior Member
Messages
406
Location
Belgium
Hip said:
If you have any links to papers on this faster onset of symptoms you mention, I'd be grateful. I know that HTLV can cause ME/CFS too, but I was under the impression that the incubation period for this was also several decades. Many people of course contract HTLV as an infant, as this virus is passed by breast feeding.
Click to expand...

Hi Hip,

I really need to archive the papers that I read in the past, but this piece puts it all together, very well:
http://www.thebody.com/Forums/AIDS/SafeSex/Q9224.html

In my personal case, I'm still not convinced I don't have HTLV, because the symptoms match almost completely. I often think of DeFreitas, she found early in the '90s an HTLV-like virus in ME/CFS. I still think she was on the right track.

Best wishes,
OS.
 
ronR

ronR

Messages
76
Location
India / singapore
What are your symptoms ?? And exactly why do you think it can be htlv ??
You are suggesting a contagious retro virus ?? ....very unlikely



Overstressed said:
Hi Hip,

I really need to archive the papers that I read in the past, but this piece puts it all together, very well:
http://www.thebody.com/Forums/AIDS/SafeSex/Q9224.html

In my personal case, I'm still not convinced I don't have HTLV, because the symptoms match almost completely. I often think of DeFreitas, she found early in the '90s an HTLV-like virus in ME/CFS. I still think she was on the right track.

Best wishes,
OS.
Click to expand...
 
ronR

ronR

Messages
76
Location
India / singapore
Hey Sherezade , I shared that link , just to exchange views.
Even i think its not HIV, or HTLV .

My best guess is....... It's a CO-FACTOR OF AIDS , which can be NEW HERPES VIRUS, or NEW MYCOPLASMA .
It's not a respiratory virus ,neither a retro virus. It's transmissible like a herpes virus .
 
Overstressed

Overstressed

Senior Member
Messages
406
Location
Belgium
ronR said:
Hey Sherezade , I shared that link , just to exchange views.
Even i think its not HIV, or HTLV .

My best guess is....... It's a CO-FACTOR OF AIDS , which can be NEW HERPES VIRUS, or NEW MYCOPLASMA .
It's not a respiratory virus ,neither a retro virus. It's transmissible like a herpes virus .
Click to expand...

Hi ronR,

we all have our personal hypothesises, and I don't necessarily think it is HTLV, but a related virus. And why can't it be contagious, as a retrovirus(indirectly)? Imagine a bacteriophage, a bacteria carrying a (retro)virus. Here, you have a possible vector which might be easy to catch, and a nasty virus which might infect other bacteria living inside you.

Best wishes,
OS.
 
Hip

Hip

Senior Member
Messages
18,116
Just one point: since there are people like Victore from China reading this thread, I suggest that people write good English, and not text-speak abbreviations like "u" = "you", which may be confusing.
 
U

urraco2012

Messages
55
Sherezade said:
R

Ron, with all due respect, I don't see the point of bringing here that link with rare strains of hiv. I assume that we all have negative hiv tests, and we have accepted already that what we have is not hiv. I assume too, that the current tests are able to pick all the strains of hiv. So, obssesing over a virus we don't have, thank God, is not helpful for anyone. I had enough already of the hiv scare. Really.

Please, don't take my comment as I'm attacking you. That's not my intention. Just saying this, because for some people has been hard enough to accept they are hiv negative, and I wouldn't want to raise doubts again. Thank you, and I hope you can get what I'm saying.
Click to expand...

First at all, I believe this forum is to help each other, not to be arguing crap.

Sherezade, I have realized that most of us have started with symptoms after some sexual or casual encounter. I know sounds obssesive and maybe worthless keep thinking in hiv, but to me its very clear that a had a kind of ARS reaction 3 weeks after a sexual encounter with a unreliable girl. So its not crazy to believe that hiv is the answer to me and to many people who still dont have a diagnosis and hiv match perfectly with the symptoms like no other illness. So regrettably thats the point of bringing here that link with rare strains of hiv, because we dont have any idea what happend with us, meanwhile any information is useful. I prefer been a hiv+ medicated than an ill person whitout diagnosis with no hopeless to find a cure nor answer, and without having idea if Im going to cause something bad to my girl, etc.
 
tonydewitt

tonydewitt

Messages
51
Location
Newark, NJ
urraco2012,

I agree -

Of course HTLV cannot be transmitted by casual contact - it requires unprotected sexual contact, blood contact, or breastfeeding. That does not mean that everyone here who became ill after an unprotected sexual contact doesn't have HTLV - that is a spurious conclusion.

Your concern about rare strains of HIV has been echoed thousands of times on many medical forums, by people who are suffering terribly with HIV like symptoms. We have to at least accept that HTLV symptoms are very close to HIV symptoms, so people with those symptoms who test HIV negative MAY have HTLV. Not to mention that many people with HIV are coinfected with HTLV.

Your point about HIV medications is a good one, but unfortunately HIV medications are not effective against HTLV. However, medications are available that have shown effectiveness against HTLV - Xeljanz (Tofacitinib) and Azacytidine (Vidaza). Both of these are FDA approved drugs (despite what someone else wrote previously); Xeljanz is a twice a day tablet, which inhibits JAK, and Azacytidine is an injection, which is a demethylating agent. I've advocated the use of these medicines (especially Xeljanz) because I don't want people to suffer nor die. Logically, if you take Xeljanz and your symptoms reduce or disappear completely, then we've at least proven that the mystery virus is like HTLV, if not a variant of HTLV (referred to as "defective HTLV" in medical literature).

Best wishes.
 
patient.journey

patient.journey

Senior Member
Messages
443
Overstressed said:
Hi ronR,

what you say is not completely true, health officials already said here in Belgium, back in '99 that HTLV was emerging.

When I became sick, I long believed I was infected with HIV. It took me years to believe I was not. Rightafter, I thought I was infected with HTLV, I had all reasons to believe: my sexual encounter was with someone where HTLV is believed to be endemic. It took me lots of ELISA tests to believe I was not infected with ...HTLV. After a few years, and no diagnosis I restarted thinking I might carry an HTLV infection. Finally I found a wonderful HTLV researcher, who performed a sensitive HTLV-test, which is used in research area. The test came back...negative. Note, that the antibody(ELISA) test on HTLV is not very sensitive(I think 96%). But, repeated tests will give you a 100% assurrance, they say.

Also, it looks like not everyone makes equally amounts of antibodies, and most tests out there are sensitive enough, but to catch a virus and bringing it to the test, is the hardest part. It's not all like HIV, where you might have thousands virus particles in a ml of blood. I think it's not all sorted out very well. And as long as it is not, you can't rule out anything.

HTLV seems indeed very hard to catch, and I personally think that this virus might use a bacteria as a transfer vector to humans. There you might have it: easy to catch, and as dessert, you get a nasty virus for free. All speculation of course...

But, my symptoms look very much like HTLV, therefore I think I might have a virus, which behaves like HTLV.

Best wishes,
OS.
Click to expand...

OK you could just make it easier and have a PCR and a western blot test you will catch either the virus or any protein in it if you dont believe in ELISA just dont stop in a thing you can solve !!
 
S

Sherezade

Messages
97
urraco2012 said:
Sherezade, I have realized that most of us have started with symptoms after some sexual or casual encounter. I know sounds obssesive and maybe worthless keep thinking in hiv, but to me its very clear that a had a kind of ARS reaction 3 weeks after a sexual encounter with a unreliable girl. So its not crazy to believe that hiv is the answer to me and to many people who still dont have a diagnosis and hiv match perfectly with the symptoms like no other illness. So regrettably thats the point of bringing here that link with rare strains of hiv, because we dont have any idea what happend with us, meanwhile any information is useful. I prefer been a hiv+ medicated than an ill person whitout diagnosis with no hopeless to find a cure nor answer, and without having idea if Im going to cause something bad to my girl, etc.
Click to expand...

Ok Urraco, here there is an action plan for you, and it's customized just for you:

Start testing for hiv every three months. Collect your negative results and despite them, don't believe it. Do that for at least 10 years, when you have reached the record of 40 negative results and have ruined your life over a disease you don't have maybe, and please notice that i say maybe, you could start considering that it's not hiv, the regular one, or any of the other very rare strains. Meanwhile, you could chip in to pay for the psychiatrist of all those who you are encouraging to fear about hiv.



Thank you.
 
ronR

ronR

Messages
76
Location
India / singapore
use of Xeljanz was associated with an increased risk of serious infections, including opportunistic infections (infections that occur primarily when the immune system is suppressed), tuberculosis, cancers and lymphoma. Xeljanz carries a Boxed Warning regarding these safety risks. Xeljanz treatment is also associated with increases in cholesterol and liver enzyme tests and decreases in blood counts.

The FDA approved Xeljanz with a Risk Evaluation and Mitigation Strategy (REMS), which consists of a Medication Guide advising patients about important safety information and a communication plan to inform health care providers about the serious risks associated with Xeljanz.

To study the long-term effects of Xeljanz on heart disease, cancer, and serious infections, the FDA is requiring a postmarketing study that will evaluate two doses of Xeljanz and include a group of patients on another approved treatment to serve as a comparison.(From - FDA.gov)

I just wonder, how ethical is it , to suggest this drug to members in this forum,as done by someone,without being a medical practitioner.

Anyway, just done my part to bring awareness.

Thanks
 
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