Medical Questions > Conditions and Diseases > HIV and AIDS Forum

Certain HIV positive, but negative tests (Page 49)

Must Read
Do you know what causes HIV? Get started by learning the facts on HIV and AIDS here....
Do you know what puts you at high risk of HIV? Debunk the myths and get the facts of HIV risk factors here....
Can you identify early HIV symptoms. Learn what to look for and when to seek medical help as we review symptoms of HIV here....

September 19th, 2012
Experienced User
All, please perform ur white blood count. Cd4 cd8 count should tell what way our body is moving due to infections.
|
Did you find this post helpful?

replied September 19th, 2012
Experienced User
body itches at bed including butt! worms? mites? bed bugs?
so the Dr tells my Gf that shes suffering from "BED BUGS" And possible "FUNGUS" and only prescribes her creams! im so mad becuase i know we need antibiotics to kill the fungus inside of us! im going to try and make an appt with my doctor for tuesday, see if i can get new tests and hopefully anibiotics.. i will request a WBC also..

DFRANK DID THE CANDIDA DIET TREAT YOU?? YOU ARE THE ONE SUFFERING THE LONGEST PLEASE WRITE BACK..

IM ALSO MAD BECUASE I WANT TO GET BETTER, BUT I WONT COMPLETE A CANDIDA DIET OR HOME REMIDIES FOR WORMS & PARASITES,.. IM JUST WAITING FOR A "MAJICAL PILL" WHICH DONT EXIST.. IM JUST SO TIRED OF NOT KNOW,, GOODLUCK EVERYONE, BYE
|
Did you find this post helpful?

User Profile
replied September 19th, 2012
Extremely eHealthy
D-man,

We all share your frustration, and we all want to get better. The best thing I can offer you in terms of a magical pill is Tofacitinib, which will be approved on November 21, 2012. If you take that & it does not make you feel better, then HTLV is not your problem.

Best wishes.
|
Did you find this post helpful?

replied September 20th, 2012
Experienced User
Do u really think tony tofactinib will relieve all our symptoms.
|
Did you find this post helpful?

replied September 19th, 2012
Experienced User
EVERYONE!!!!!!!!!!!!

Just doing some online research and found something called Chagas Disease, not sure if anyone has mentioned this but it matches a lot of our symptoms and then some. It has 2 phases acute and chronic, have a read and tell me what you guys think. This could be a break for some of us.

P.S. Good luck friends!
|
Did you find this post helpful?

replied September 19th, 2012
Experienced User
Hi everyone,

October 17 will be 1 year since my exposure.

I am having throat problems these days and since day, the lymph nodes in my neck has become painful, and my leg is weak.
|
Did you find this post helpful?

replied September 19th, 2012
Experienced User
Dear All,

I also would like to share if it is possible to see if we are infected with M.Fermentas.

http://www.hypermed.com.au/hypermed/HyperM ED%20AIDS.htm
|
Did you find this post helpful?

User Profile
replied September 19th, 2012
Extremely eHealthy
Ustas,

You're three weeks ahead of me, I screwed up on November 7th; I'm mostly having lower back pain during sleep & difficultly walking straight, and of course red eyes & eye floaters.

Best wishes.
|
Did you find this post helpful?

replied September 20th, 2012
Experienced User
Tony try taking Gooseberry Juice for your eye floaters, My eyes dont hurt much these days after taking this.
|
Did you find this post helpful?
Users who thank adviseme for this post: TonyDewitt 

User Profile
replied September 20th, 2012
Extremely eHealthy
AdviseMe,

Thanks for the juice tip, I appreciate that.

I do believe that Tofacitinib will relieve our symptoms; it already has done miracles on thousands of patients dealing with other immune inflammation problems (arthritis, colitis, psoriasis). Also know that research has shown that it is active against HTLV (see quote below). Recall that Alberto only took seven years to develop leukemia from when he was infected with HTLV - I am not going to suffer for seven years with paralysis, pain, and illness only to find out that I am going to die from leukemia - that is insane.

ALL OF US need to recognize that the symptoms that we have now are just the tip of the iceberg - in other words, we are going to get much sicker in the long run, and the doctors won't be able to do crap for us at that point. Alberto had seven years to limp around before leukemia came knocking at his door, are you going to wait for that to happen? I am not. I am going to go on Tofacitinib as soon as it becomes available (Nov 21, 2012), and God willing that will be the only thing that keeps me from progressing to leukemia, paralysis, and DEATH - unless the rest of you are cool with any of those things, I suggest you start looking for Rheumatology doctors who are willing to prescribe Tofacitinib. Sorry for the tough love, but I've read everything that's been written in this forum, and we've discussed bugs, worms, bacteria, etc. With all due respect, we need to start taking medication. Here's the research article on Tofacitinib:

At 50 nM, inhibited the 6-day ex vivo spontaneous proliferation of PBMCs from ATL and HAM/TSP patients by means of 67.1% and 86.4%, respectively. Furthermore, Tofacitinib inhibited STAT5 phosphorylation in isolated ATL T cells ex vivo. Finally, in an in vivo test of biological activity, Tofacitinib treatment of mice with a CD8 T cell IL-15 transgenic leukemia that manifests an autocrine IL-15/IL-15Ra pathway, prolonged the survival duration of these tumor-bearing mice. These studies support further evaluation of the Jak3 inhibitor Tofacitinib in the treatment of select patients with HTLV-associated ATL and HAM/TSP.
|
Did you find this post helpful?

replied September 20th, 2012
Experienced User
Thnx tony, this is the only hope for now. did u get any reply from bioniz. When are they looking to roll up their peptide technology against hamtsp.
|
Did you find this post helpful?

replied September 20th, 2012
Experienced User
Tony,

Just wonder did you check CSR from your blood report? is it abnormal?
|
Did you find this post helpful?

User Profile
replied September 20th, 2012
Extremely eHealthy
AdviseMe,

Yes, this is the only hope for now - it will soon be an approved drug that has been shown to be effective. Other companies can come up with their own treatments in the future, but for now I need to stop suffering with the pain, and stop worrying that I will end up in a wheelchair with paralysis or dead from leukemia. Recognize that it is an incredible stroke of luck (or God's will) that this drug has been approved for generic problems like arthritis, psoriasis, and colitis, when it is also active against HTLV. Because of this coincidence, we are the luckiest people in the 30 years of the HTLV epidemic. We can take this drug, and it will suppress HTLV, just like HIV medications do for HIV.

Best wishes.
|
Did you find this post helpful?

User Profile
replied September 20th, 2012
Extremely eHealthy
Hope,

I do recall that my sedimentation rate was a little high, but not enough to concern the doctor. Was that what you meant by CSR?

Best wishes.
|
Did you find this post helpful?

replied September 20th, 2012
Experienced User
Tony, Amine Brother..
|
Did you find this post helpful?

replied September 20th, 2012
Experienced User
Difficulties in HAM/TSP diagnosis.

Abstract

The World Health Organization recommends the use of Osame's criterion (1990) for the diagnosis of HTLV-I-associated myelopathy (HAM/TSP). In 2006, a group of neurologists developed a Brazilian criterion that can diagnose HAM/TSP from its onset.
OBJECTIVE:

It was to test the agreement between both criteria.
METHODS:

The study included evaluation of clinical and laboratory findings of 35 patients. The ELISA, Western blot and/or polymerase chain reaction was used to search for anti-HTLV-I antibodies. The analysis of agreement was based on the calculation of Kappa.
RESULTS:

Concordance of 100% (Kappa=1) occurred in cases of "defined" HAM/TSP, but not in patients with "probable" diagnosis.
CONCLUSION:

The Brazilian criteria was as effective as Osame's criteria for the diagnosis of "defined" HAM/TSP. However, both require more specific biological markers in cerebrospinal fluid for the laboratory diagnosis of probable cases.
|
Did you find this post helpful?

User Profile
replied September 21st, 2012
Extremely eHealthy
Here's the latest reply from "OverStressed" from the forums dot phoenixrising dot me site - you might find his situation both interesting and parallel to your own. Again, we can learn from people who have been sicker longer than us (DFrank, I know that you're out there somewhere):

Thank you for your reply. I'm sorry for not replying you sooner. I don't feel well this week, abnormally tired, cold hands and feet, heart rhythm issues...
I guess my Hashimoto's has returned. I felt quite good lately on that matter, but I downscaled my treatment with GC-Maf, lately, since I had already so many injections. I guess, I have to continue...forever.

The doctor who admitted that there have to be something, is a doctor that works in an STD-center, that is connected to the Belgian Tropical diseases center. That's one of the best known clinics in the world concerning especially HIV. Dr. Christian Piot was one of the first who discovered HIV in Zaire, now Congo. In that center you can test anonymously, and for free. And, since I thought I caught HIV, or some other tropical disease from this African promiscuous woman, I ended up there. But, repeated tests stayed negative. At one consultation, she saw I was desperate that all my tests came back negative, she told me many people come with these symptoms, and negative tests. She then said: I'm sure there's something we yet don't know, but that's not helpful for you, at this moment...

I emailed the HTLV researcher today, asking her if my tests back then were negative, or negative after confirmation. I just want to know if there's a chance I'm infected with HTLV. If you google, Hashimoto is linked to HTLV. So, there has to be something. Don't know though, if she will answer. I hope so, she's a doctor after all!

I read that you caught it also sexually? I hope it's nothing chronically with you. One year is too soon to tell. When I was in the process of looking for answers, I met many people on the Net who experienced just the same symptoms as I have. You can check on Yahoo, there's a group: aunknownviralillness, and I have admin rights. It's not alive anymore I guess, I didn't check it for a whole while now. If you want, I can grant you access, so you can browse through the posts. I tell you, many lives ruined...

Personally, I think the medical/science world knows what we have. I think that retroviruses are much more common among us, than we realize. And since HIV was bad publicity for retroviruses, they won't tell. Imagine what it would mean when they would admit this? Public health system would collapse, treatment with ARVs is not possible. I think a lot this way, It's just a hypothesis, but...

OS,

I'm sorry that you aren't feeling well this week; I agree that medical science knows what we have, but is being irresponsible about dealing with it. Also, recognizing HTLV would mean that HIV no longer has the spotlight (which would infuriate the HIV positive people), and would force the government into doing something about HTLV. Like you stated, so many lives ruined. I'd certainly like to join the group "aunknownviralillness", since I'm sure there's many people dealing with the same thing, just like my friends on EHealthForum. Please keep in touch with me, especially in regards to your testing - since you have been sicker longer than me, I am looking to you for any information that you can provide please.

Best wishes.
|
Did you find this post helpful?

replied September 21st, 2012
Experienced User
Tony this is a recent reply after my HTLV negative antibody test from Dr Koyanagi who is a reasercher in Japan for HTLV.
1) My antibody test is negative, but wicdthin range negative, does this mean there are some anitbody?
NO. This is specific.

> 2) My cd4 count is 915 and cd8 count is 246 very low, cd4/cd8 ratio is 3.9 which is higher and in sink with HAM TSP patient. Is this something to worry?
Some healthy persons show high CD4/CD8 ratio. Ratio is not important. The number is important.

> 3) Should i take a more sensitve pcr or westernblot test for HTLV as i am still having classic symptoms of HTLV?
No.

> 4) Do people seroconvert after six months?

This is talking about seroconverted person. I don't think your case is so far that of seroconversion. There are more than millions HTLV positives in Japan and the number of HTLV-related diseases, such as ATLV and HAM, is less than 10, 000 cases. You must know that HTLV is not fully pathogenic like HIV is.

You should ask your Doctor about these medical knowledges. It is risky self diagnosis because you have no medical experiences and knowledge.

Koyanagi
|
Did you find this post helpful?

User Profile
replied September 21st, 2012
Extremely eHealthy
AdviseMe,

It's nice that you were able to reach an actual HTLV researcher and get actual HTLV advice. I understand that the doctor feels that HTLV is not fully pathogenic like HIV, but do you want to keep feeling the way that you do for the rest of your life? I don't. This goes back to what I wrote earlier: either you're satisfied with being the level of sickness you are now AND are willing to take the chance that you aren't going to progress to paralysis / leukemia / death later, or you want to try to improve your health - everyone needs to decide this question for himself.

What if Tofacitinib is an actual cure? What if six months or a year of Tofacitinib treatment actually cures HTLV? Does anyone want to return to normal health again? We won't know unless we try it. I'm going on Tofacitinib as soon as the FDA approves it. For me, it's complete bull to wait until I get leukemia like Alberto did. I know for a fact that Alberto would have taken Tofacitinib if it was available seven years ago - now he's looking at possibly dying from leukemia. Fortunately for us, we have an option other than sitting around.

Best wishes.
|
Did you find this post helpful?

replied September 22nd, 2012
Experienced User
Tony i am not relaxed or trying to convince my self that i have nothing while i am going through bunch of symptoms. Both my self and HTLV Dr know that HTLV is very difficult to diagonise at acute infection stage or to that matter at early years of infection.
|
Did you find this post helpful?

replied September 21st, 2012
Experienced User
Ustas, I feel the same way man I'm thinking I have some form of lymphoma also, lump feeling in the throat (since the exposure), soar neck glands, pain in the leg behind knees, weak legs, dry mouth, and itchy skin at night. I mentioned this to my Dr. and he said no because my lymphocytes would be high. The last CBC I did my lymphocytes were 40% normal range is 14-46. My WBC has been low a few times but then goes back to normal. So trust me I know how you feel just hng in there and be stong.

P.S. EVERYONE, did anyone happen to read up on *chagas disease*?
|
Did you find this post helpful?

replied September 22nd, 2012
Experienced User
Scared.

I think you may also consider the possibility of mycoplasma fermentas infection. It could cost many hiv-aids like symptoms and chronic fatigue
|
Did you find this post helpful?

replied September 22nd, 2012
Experienced User
A few months ago when I did my CBC, my lymphocytes was out of range. It was 2% high, but Dr. said nothing to worry about. I did another but didn't get a chance to see it but my Dr called and said all is good.
|
Did you find this post helpful?