Is it a new disease or its CFS ?

[Survivor84]

Ron she was given the diagnosis of cfs. She contracted her illness sexually and unknowingly infected another. People with this are being diagnosed with cfs because of the signs and symptoms and doctors cannot find a reason for there illness

 

[Sherezade]

Today I watched this movie http://www.youtube.com/embed/UwNMGdWyjcc maybe it wasn't one of my greatest ideas, but it showed how CDC hides information from public. Now my paranoia levels have reached a record. Jajaja

 

[Survivor84]

So sad,but so true, I believe they have been made aware of on more than one ocassion of people in our situation and still choose not to act upon it. So messed up, it would be so interesting to see some one of them in this situation or there family.

 

[Sherezade]

Yes Teedot, you are right. But the ironic matter is that no one is really safe from getting this pathogen, even the CDC responsables and their families. This pathogen is not like hiv, that only get transmitted by sex or niddles. You can catch this just by kissing someone in the cheek. So, in the case of hiv, you are pretty sure that if you haven't gotten yourself in risky situations, it's imposible to get it (assuming that tests are so advanced that there's no way you get it in a blood tranfusion). But it has called my attention, after reading houndreds of cases in hiv forums, that many people apparently got an unknown pathogen, with very low risk situation, like oral sex or protected sex. Yes, maybe many of them are just stressed because they are married and went with a prostitute. But all of them? Why do they have symptoms after all those hiv negative tests? I wonder...

 

[hivlikevirus]

Definitely worth a watch:

you may find this video helpful:

There's also a (recent) comment on that video:

"RaymondsRants 1 week ago
I have had ME/Cfs for many years. I was fit and healthy until I married got very sick was told by Doctor had EBV..I believe it was sexually transmitted..After each child I serverly relapsed,,Have never recovered after last child...Diagnosed by a Neurologist 1986 as ME/CFS..."

Same thing we're going through(?)

Also, is anyone close to Torrance, California / the doctor (John Chia) from the above video? Definitely seems like someone we should try and get in touch with. Hope you guys are all holding up ok!

 

[Sherezade]

I apologize for my paranoia. I'm not really fond of conspiration theories. As a matter of fact, if a year ago someone would have told me all these, I would have thought that this person should be in a mental home. But, now that I've been sick and neglected by 24 doctors in one year, i had to change my mind. I hope that what I'm thinking is not real. I really do.

 

[Survivor84]

Unfortunately we are only a few upon millions in this situation. It is known about by the CDC and is being neglected.

 

[Hip]

The CDC are not particularly good at finding the causes of diseases.

One new disease that has emerged in recent years is Morgellons disease. Some of the mental symptoms of Morgellons disease are very similar to the mental symptoms produced by the Chinese "HIV-like" virus (and similar to those produced by my virus; indeed, I thought at one point that I might have Morgellons disease).

Although they initially ignored it, the CDC was pressurized into doing something about Morgellons because of the large media coverage of this new disease. So they spent $300,000 on research. Yet the reseachers came up with nothing.

But just recently, some independent research found that Morgellons is linked to Borrelia bacteria: 1, 2.

The moral of this story is that scientific answers are quicker found by researchers that are talented and interested in the subject. Just spending money does not guarantee answers.

 

[Survivor84]

http://www.nytimes.com/1992/07/22/w...v-virus-is-growing.html?pagewanted=all&src=pm
interesting article, may not be our case, I am aware that it from long ago,at the end of the article is noted that the CDC did not report known cases, and nor did they encourage medical experts to do so either.

 

[tonydewitt]

Hi - new here.

Been experiencing multitude of symptoms for 4 months. Tested conclusively negative for HIV/HTLV. I'm 29 yr old male. Had low risk encounter with a woman. One night stand. Unprotected oral both ways. Thought for sure it was HIV then HTLV despite low risk. First symptom was UTI like. UTI resolved within 2 weeks of exposure, but as soon as UTI cleared up tons of new things began. Many symptoms have resolved like nausea (lasted 2 weeks), fatigue (lasted 2 months), tingling limbs (2 weeks), rectal mucous discharge (1 week), and severe nightsweats (2 months). Other symptoms remain: white coating on tongue, red pin pricks dots on palm, non itchy red knuckles, weird skin imprints (that take extra time to disappear), receding gums, and most recently a swollen tongue. Has anyone here noticed a swollen tongue? If i stick my tongue out there are noticeable teeth marks around the edges and it looks swollen (it was never like this before - and i know because i'd been watching the white tongue so closely). My CBC is all within "normal" range. Also i never ran a fever, in fact my body temp has constantly been on the low side - like 97 faranheit. Infectious disease doc is stumped. Looking for support.

I have not seen much written in this forum about 1)red pin prick dots, 2)rectal mucous, and 3)swollen tongue. Have any of you had those symptoms too, or just me?

Despite these pesky, lingering symptoms, my body feels close to normal again. Very strange. Thanks for all your contributions here. It's been nice to read.

RealConcern:

1. Where in the USA are you located? Im in NJ near NY.

2. You & I have / had ALL the same symptoms, especially low body temperature, rectal mucous, etc.

3. I believe that we have HTLV - you can contract it by giving oral - I know because I infected two women that way (without ejaculation).

4. The window for HTLV is undefined - I have not tested positive for it yet.

5. There's a group of us on eHealthForum who are going to all get the Western Blot for HTLV - we've been sick for over a year, and are tired of not having a diagnosis. The forum there is self-destructing, so they'll all probably be here soon

If you have any questions, message me & I will give you my phone number.

Best wishes.

 

[patient.journey]

Omar,she makes great points, she is on the right path. Maybe you dont believe in them all. But she is really not in a much different situation then us. She suggested that we write to the government http://www.whitehouse.gov/contact/
http://www.house.gov/representatives/
http://www.senate.gov/general/contact_information/senators_cfm.cfm, look anything can help and at least we can say we tried. We shall continue to research through doctors and virologist, but maybe writing,emailing etc. to organizations and what not will help as well.

I know how she thinks and she is good but there are some differences between us as i believe that HIV cause AIDS but not alone co factors play a major rule in it that without them you might not ever get it AIDS ,,

 

[patient.journey]

Our case is different from normal CFS patients ....we don't have such severity, people even after 14yrs don't have cfs ,in case of this hiv like virus, but they have some constant muscle twitching etc . And its some what contagious

Correct we are under the same umbrella but people got different causes (Viral,Bacterial, immunity and genetic ) and i believe and am sure that we are under the pathogen area

 

[patient.journey]

Today I watched this movie http://www.youtube.com/embed/UwNMGdWyjcc maybe it wasn't one of my greatest ideas, but it showed how CDC hides information from public. Now my paranoia levels have reached a record. Jajaja

when you see such stuff close it thats better for your mind

 

[ronR]

I know how she thinks and she is good but there are some differences between us as i believe that HIV cause AIDS but not alone co factors play a major rule in it that without them you might not ever get it AIDS ,,

I agree , unless a person gets the opportunistic infections by different pathogen, they won't get AIDS,though HIV positive.

Same way,if a HIV negative person gets too many opportunistic infectious pathogens(AIDS COFACTOR) their health will be effected and may develop CFS ....or non HIV AIDS in some cases.

 

[Survivor84]

Look we are pretty much all I'm the same boat, we al have something, in which there is no diagnosis for. It feels as though we are all walking in circles, bumping into eachother. Nobody at this point is able to provide a clear answer. We al have assumptions. We should take into consideration those that have been in this longer, for Iam sure many before us have exhausted some of the best avenues. At the end of the day, this needs to be in mainstream media. Otherwise we are just individually looking for answers like so many have before us. If they can study Zombie viruses, why can't this get recognized. It needs to be a group effort.

 

[Overstressed]

Hey tonydewitt

These disease or syndrome we discussing here ,is easily transmissible by saliva etc, whereas htlv contraction is difficult than even HIV . Other members please be aware ,that people may use your situation to scare u for their own benefit.

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.

 

[ronR]

Look we are pretty much all I'm the same boat, we al have something, in which there is no diagnosis for. It feels as though we are all walking in circles, bumping into eachother. Nobody at this point is able to provide a clear answer. We al have assumptions. We should take into consideration those that have been in this longer, for Iam sure many before us have exhausted some of the best avenues. At the end of the day, this needs to be in mainstream media. Otherwise we are just individually looking for answers like so many have before us. If they can study Zombie viruses, why can't this get recognized. It needs to be a group effort.

Yeah , they can detect this but until the ignorance is there nothing can be achieved.

I don't think it would be that tough to detect this pathogen,if all modern technology is used .
If a case study on such patients can be done, then it can be found...if there's any similar sequencing or any particular antibodies present.

But the question is who will do ?? Who cares ??

 

[Hip]

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.

 

[Survivor84]

Yeah , they can detect this but until the ignorance is there nothing can be achieved.

I don't think it would be that tough to detect this pathogen,if all modern technology is used .
If a case study on such patients can be done, then it can be found...if there's any similar sequencing or any particular antibodies present.

But the question is who will do ?? Who cares ??

This is why iam suggesting as a group to take it to the media, even if we all have different symptoms and what not. We all surer following contact with someone infected. If we can get every media email including those small newspapers. Even ppl like tonydwitt, can help. We need to help eachother regardless, because none of us has answers. This has been going on for far too long. Please members let's remember how long others fought before us. If anybody is willing to help me work up a good letter that's sounds interesting and believable. That's how the Chinese got somewhere at all.

 

[ronR]

This is why iam suggesting as a group to take it to the media, even if we all have different symptoms and what not. We all surer following contact with someone infected. If we can get every media email including those small newspapers. Even ppl like tonydwitt, can help. We need to help eachother regardless, because none of us has answers. This has been going on for far too long. Please members let's remember how long others fought before us. If anybody is willing to help me work up a good letter that's sounds interesting and believable. That's how the Chinese got somewhere at all.

Sure, I'm ready to join such groups