Medical Questions > Conditions and Diseases > HIV and AIDS Forum

Certain HIV positive, but negative tests (Page 115)

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....

User Profile
January 8th, 2015
Extremely eHealthy
Jammy,

I'm glad that I was part of your decision no to kill yourself. Believe me, I've been there, and so have the rest of us. Also I'm glad that you've adopted antiviral supplements, especially those earmarked as anti-HTLV. Please continue to research and take those supplements and any new ones identified as anti-HTLV, such as Prosultiamine and Cepharanthine. And thanks for mentioning Phoenix Rising forum, they are a group of incredibly nice and gracious people, who have been sick much longer than us. You will see that I've posted there in the past, and if you can, please say hi to OverStressed for me. Also please feel free to post to the Face Book HTLV page any helpful information you can find, so that everyone else can benefit. Like you, I believe that this will take many years to be recognized, studied, and treated, since right now NOTHING is done to treat HTLV. Recall the carnage of HIV from before Robert Rayford starting showing symptoms in 1966, until 1995 when treatment finally began saving lives, that's thirty years my friends. Now extrapolate the same for HTLV.

TRW,

As I've stated many times before, everyone here is free to disagree with me that this is HTLV. But, being a logical person, and seeing how many symptoms match that, and how HTLV is virtually ignored by everyone in the medical industry, it all makes sense. As a society, but not as individuals, we have brought this epidemic on ourselves by sweeping it under the rug. Jamaicans, Brazilians, and Japanese that I've spoken to have never heard of this disease, yet it is endemic in their countries! People who are dying from HTLV related leukemias/lymphomas are told that their HTLV is not causing their death, what a sick and horrible joke. Think about all of the millions of people who have died as a result of this negligence, and all of the millions people whose lives are currently being ruined by this disease. Please recall the group from TheBody site ten years ago who said that they are dying from Non-Hodgkins lymphoma - that will be us eventually.

Gazyvaro (obinutuzumab) has been assigned "Drug Discovery of the Year 2015" for lymphomas & leukemias, it targets CD20 expressed cells, which just happens to be what happens (CD20 expression) when HTLV infects cells. I'd laugh really hard at this level of sheer stupidity if this wasn't killing me.

Everyone,

I had made a written request to Gilead Pharmaceuticals that they contact me regarding the release date of the new formulation of Tenofovir (TAF). Today I got a phone call from them, I was told that they will be wrapping up clinical trials and applying for FDA approval later this year. Needless to say, I was overjoyed that the drug will be available sooner than later, I had originally expected them to take years to do this. I will be closely monitoring the new drug's release and will do everything to make sure that I am one of the first people to receive it.

Best wishes and Happy New Year to you all.
|
Did you find this post helpful?
Users who thank TonyDewitt for this post: jammy88 

User Profile
replied January 8th, 2015
Experienced User
Many thanks for your post, Tony.

I don't know how, but we'll be able to get out of this hell. My spine has been pretty inflamed in the last few days, however I keep being hopeful.

Yesterday I read of a study involving JAK inhibitors in HIV cure. My thought is that 'the World goes on', so does the medical industry - and it does much faster than 30 years ago. This means that we'll somehow get adequate treatment for our condition. I don't care about the pathogen itself at the moment. Even getting rid of the symptoms would be perfect… I just want to keep my ability to walk. Am I asking for too much?

May God bless You all, I consider you as brothers and I'm thankful that I found this forum last Summer.
|
Did you find this post helpful?

User Profile
replied January 9th, 2015
Experienced User
Tony. If we are going to start our own forum and or website, I think we need to not make a diagnosis for ourselves unless we've tested positive for something. I think we should list our symptoms, maybe from most problematic to least problematic order. My hope is the medical community will begin to see a trend. I think we should also list the testing we've had and the results also.

I have a ton of things that are HIV like but in many ways I don't have HIV symptoms. My immune system seems fine. But I have memory issues that all started after having a massive and I mean MASSIVE headache. I also have a lot of symptoms I see on Phoenix Rising. BUT I don't know what I have so I want to be open to anything.
|
Did you find this post helpful?

User Profile
replied January 10th, 2015
Experienced User
Hi TRW,

thats a good approach. Even though I'm convinced this might be Htlv, I think we should avoid self-diagnosing ourselves in our website. We should report our stories, how we got infected, how this all started and what we are / have been feeling.

I'm down to anything.
|
Did you find this post helpful?

User Profile
replied January 10th, 2015
Experienced User
Just wanted to add that I'm thinking to get 'Next Generation Sequencing' done.. If i don't get a diagnosis within a year, this is what I'll do.
|
Did you find this post helpful?

User Profile
replied January 8th, 2015
Extremely eHealthy
J,

You are very welcome for my post, I've also been suffering with spinal inflammation. I had a posted about JAK inhibitors a long time ago, and then one was approved - Xeljanz, but the side effects are deadly. It is heavily advertised here as a treatment for arthritis inflammation, and its a miracle drug for many people with severe arthritis. We have to care about this pathogen, and do everything we can to weaken it, in order to keep our ability to walk, and no, you are not asking too much. If one of us was brave enough to try Xeljanz, we could see if that helped, but for me I am waiting for TAF to be approved.

Best wishes.
|
Did you find this post helpful?

User Profile
replied January 8th, 2015
Experienced User
I can still 'hang in there', my infection is pretty recent (10 months) and have overall improved since last September where I was bed bound.

I'm really curious to know whether you'll get some improvements with TAF. Hopefully you can get it in Q4 2015. Please keep us posted; I might ask for the same treatment within a couple of years.

We don't have Xeljanz in Italy yet (hasn't been approved due to safety concerns), but I guess one day these JAK inhibitors will become broadly available and with less side effects.

Also, monoclonal antibodies and other technologies might help us in the future. It should be an exciting decade for autoimmune diseases treatment, so I'm positive that we'll find some sort of solution.

Best wishes and God bless you all.
|
Did you find this post helpful?

User Profile
replied January 9th, 2015
Extremely eHealthy
J,

Recall that anything with a "mab" ending (e.g. obinutuzumab) is a monoclonal antibody. A new agent called Fostemsavir blocks the gp120 protein of HIV, preventing cell attachment; if something like this was developed to block HTLV's similar gp46 protein, that would be great. BIT225 blocks the Vpu ion channel activity of HIV, again if something like that was developed for HTLV, that would be great. Here's to new substances that are more effective and less toxic.

Best wishes.
|
Did you find this post helpful?
Users who thank TonyDewitt for this post: jammy88 

User Profile
replied January 13th, 2015
Experienced User
Mogamulizumab was also approved in 2014 for treatment of ATL. Apparently, it's also effective in treating HAM.
|
Did you find this post helpful?

User Profile
replied January 19th, 2015
Extremely eHealthy
Jammy,

Thank you for the that excellent reference. Always keep in mind that when a medication is approved to treat ATL or HAM, that means that the medication is effective against HTLV - here's the article that states exactly that, titled "Mogamulizumab, an Anti-CCR4 Antibody, Targets Human T-Lymphotropic Virus Type 1-infected CD8+ and CD4+ T Cells to Treat Associated Myelopathy". J Infect Dis. 2015 Jan 15;211(2):238-48.

I will also post this to the HTLV help face book page as people there are suffering with HAM or ATL.

Best wishes.
|
Did you find this post helpful?
Users who thank TonyDewitt for this post: jammy88  jammy88  jammy88 

User Profile
replied January 23rd, 2015
Experienced User
Thank you Tony for posting that on the HTLVHelp page. Please keep spreading the awareness about this virus.

I'm glad some people are working hard to find the way to treat this. We'll get there, one day.
|
Did you find this post helpful?

User Profile
replied January 10th, 2015
Experienced User
Stem Cell Transplants May Halt Progression of Multiple Sclerosis
NIH-Funded Study Yields Encouraging Early Results
Three-year outcomes from an ongoing clinical trial suggest that high-dose immunosuppressive therapy followed by transplantation of a person's own blood-forming stem cells may induce sustained remission in some people with relapsing-remitting multiple sclerosis (RRMS). RRMS is the most common form of MS, a progressive autoimmune disease in which the immune system attacks the brain and spinal cord. The trial is funded by the National Institute of Allergy and Infectious Diseases (NIAID), part of the National Institutes of Health, and conducted by the NIAID-funded Immune Tolerance NetworkExternal Web Site Policy (ITN).

Three years after the treatment, called high-dose immunosuppressive therapy and autologous hematopoietic cell transplant or HDIT/HCT, nearly 80 percent of trial participants had survived without experiencing an increase in disability, a relapse of MS symptoms or new brain lesions. Investigators observed few serious early complications or unexpected side effects, although many participants experienced expected side effects of high-dose immunosuppression, including infections and gastrointestinal problems. The three-year findings are published in the Dec. 29, 2014, online issue of JAMA Neurology.

“These promising results support the need for future studies to further evaluate the benefits and risks of HDIT/HCT and directly compare this treatment strategy to current MS therapies,” said NIAID Director Anthony S. Fauci, M.D. “If the findings from this study are confirmed, HDIT/HCT may become a potential therapeutic option for people with this often-debilitating disease, particularly those who have not been helped by standard treatments.”

Scientists estimate that MS affects more than 2.3 million people worldwide. Symptoms can vary widely and may include disturbances in speech, vision and movement. Most people with MS are diagnosed with RRMS, which is characterized by periods of relapse or flare up of symptoms followed by periods of recovery or remission. Over years, the disease can worsen and shift to a more progressive form.

In the study, researchers tested the effectiveness of HDIT/HCT in 25 volunteers with RRMS who had relapsed and experienced worsened neurological disability while taking standard medications. Doctors collected blood-forming stem cells from participants and then gave them high-dose chemotherapy to destroy their immune systems. The doctors returned the stem cells to the participants to rebuild and reset their immune systems.

“Notably, participants did not receive any MS drugs after transplant, yet most remained in remission after three years,” said Daniel Rotrosen, M.D., director of NIAID’s Division of Allergy, Immunology and Transplantation. “In contrast, other studies have shown that the best alternative MS treatments induce much shorter remissions and require long-term use of immunosuppressive drugs that can cause serious side effects.”

The study researchers plan to follow participants for a total of five years, recording all side effects associated with the treatment. Final results from this and similar studies promise to help inform the design of larger trials to further evaluate HDIT/HCT in people with MS.

The work was sponsored by NIAID, NIH, and conducted by the ITN (contract number N01 AI015416) and NIAID-funded statistical and clinical coordinating centers (contract numbers HHSN272200800029C and HHSN272200900057C). The ClinicalTrials.gov identifier for the study High-Dose Immunosuppression and Autologous Transplantation for Multiple Sclerosis (HALT-MS) is NCT00288626.
|
Did you find this post helpful?

User Profile
replied January 10th, 2015
Experienced User
Remember I told you guys about my new GP ? ok, so last time she referred me to a dermatologist, cuz she had noticed several black dots on my body and didn't 'like' their appearance (color, size…)

The dermatologist said I need a lil surgery on one of them and annual check-ups since there are many new black dots coming out...

I can tell for sure this is related to this damn infection. I guess HTLV can cause melanoma, too.
|
Did you find this post helpful?

User Profile
replied January 10th, 2015
Experienced User
I apologize, by 'black dots' I meant 'moles'. Thank you
|
Did you find this post helpful?

User Profile
replied January 11th, 2015
Experienced User
Medicine (Baltimore). 2015 Jan;94(1):e382. doi: 10.1097/MD.0000000000000382.

Cyclosporine for the Treatment of HLTV-1-Induced HAM/TSP: An Experience from a Case Report.
Snchez-Montalv A1, Salvador F, Caballero E, Molina I.
Author information

Abstract
HTLV-1-associated myelopathy/tropical spastic paraparesis (HAM/TSP) remains a challenging disease. Treatment options are scarce, and their safety and efficacy are currently a matter of concern.We present a case report describing our experience using cyclosporine in a patient with early HAM/TSP who started with a gait disturbance at Vall d'Hebron University Hospital (Barcelona) from August 2012 to October 2013. After 62 weeks of treatment, clinical improvement was observed and proviral load diminished. No safety concerns were observed.Cyclosporine seems to be effective in new-onset HAM/TSP or in chronic HAM/TSP that develops a relapse. However, the duration and safety profile of this steroid-sparing therapy remain unknown and should be further investigated.
|
Did you find this post helpful?

replied January 11th, 2015
Experienced User
Hey goose and tony -

I guess I am in a stable state.

Basically back to normal feeling, but some tiredness and weight gain - also I have noticed slow healing. I went to more docs - with no improvement.

My plan is to try to stay active, follow up with the group here and if my symptoms return try to find a doctor that will find the issue via standard tests - cbc or otherwise.

Still chatting with my doctor friend to see if there are tests or trials to try -

I agree with the group given how easy this is to transmitt without a test - I believe it will attract the attention of the CDC and others at some point
|
Did you find this post helpful?

User Profile
replied January 11th, 2015
Experienced User
hi wyoming,


Glad you feeling kinda better. Please keep boosting your immune system with adequate supplements and vitamins.

I agree that this will attract the authorities' attention - it probably did, already, and something is changing cuz research on Htlv has kinda accelerated compared to 15 yrs ago.
I'm convinced that we're doing something good - both for us and for the Global community - by posting and sharing our experiences with this disease in here.

Please hang in there.

Blessings !
|
Did you find this post helpful?

User Profile
replied January 11th, 2015
Experienced User
How many of you experienced "the worst headache of your life" prior to memory problems, change in gate, headaches becoming daily occurrences, etc.? I remember the night I had such a headache. It changed my life, for the worst obviously...
|
Did you find this post helpful?

User Profile
replied January 12th, 2015
Experienced User
I did . One of my first symptoms was encephalitis, which lasted for several weeks.
|
Did you find this post helpful?

User Profile
replied January 12th, 2015
Experienced User
J. I was convinced I had encephalitis! I went to the emergency room twice thinking this. The docs said I didn't have it. I almost demanded a spinal tap the 2nd time in the ER. But the doc said I definitely don't have it. BUT my symptoms were so indicative of what I read about it. I still have some of those symptoms on days when I didn't get a good night's sleep.

How do you know you had encephalitis?
|
Did you find this post helpful?

User Profile
replied January 13th, 2015
Experienced User
TRW,

I talked to an Inf.Diseases doctor about my symptoms and she said those symptoms looked like encephalitis indeed. Neutral
|
Did you find this post helpful?

User Profile
replied January 13th, 2015
Experienced User
OK. Then you and I are in the same boat in that are maybe. I'm sorry you are going through what I'm going through. I'm crying a lot today. I can't believe I went down the path I did regarding sin. I can't believe it.
|
Did you find this post helpful?

User Profile
replied January 12th, 2015
Experienced User
Everybody please go on Youtube and look for this video: Exploding Auto Immune Epidemic - Dr Tent "It's Not Autoimmune, you have Viruses". You'll understand what we're all going thru.
|
Did you find this post helpful?

User Profile
replied January 12th, 2015
Experienced User
I didn't watch yet but the comments mention a lot about vaccinations. Do you think what we have has something to do with vaccinations?
|
Did you find this post helpful?

User Profile
replied January 13th, 2015
Experienced User
TRW,

no, not vaccinations in our case. An infection is the root cause of our illness, however Doctors won't tell us until a proper test is developed. Meantime, we'll just be treated as 'autoimmune' disease patients… or maybe as ME/CFS patients.
|
Did you find this post helpful?

User Profile
replied January 14th, 2015
Extremely eHealthy
J,

You reminded me that MS patients are being treated with HIV drugs and bone marrow transplants, as has been done with HTLV patients, and their MS has been shockingly put into remission. At this point, common sense dictates that MS is cause by a HTLV like virus, if not HTLV itself.

Best wishes.
|
Did you find this post helpful?

User Profile
replied January 14th, 2015
Experienced User
Tony,

that's true indeed. There are cases like the ones you mentioned.
I will keep you guys posted on how it goes with my Genetics check up. Hopefully, they'll find something. Genetics should be able to identify any infectious pathogen damaging DNA, so I'm confident to get a certain kind of diagnosis. Also, the clinic I got referred to is a Rare Diseases one, where they study ME/CFS and other stuff. I think that's probably one of the best solutions, at the moment.
|
Did you find this post helpful?

User Profile
replied January 12th, 2015
Experienced User
An important work from Dr. Rath underlines the importance and the effectiveness of L-Lysine against HTLV, causing apoptosis of infected cells.

www[DOT]drrathresearch[DOT]org[SLASH]resea rch[SLASH]publications[SLASH]cancer[SLASH] leukemia[SLASH]143-mechanistic-aspects-of- apoptosis-induction-by-l-lysine-in-both-ht lv-1-positive-and-negative-cell-lines[DOT] html
|
Did you find this post helpful?

User Profile
replied January 12th, 2015
Experienced User
Anti-Proliferative Effects of Antioxidants Using HTLV-1 Positive and Negative Malignant T-Cells PDF Print E-mail
Harakeh SM, Diab-Assaf M, Niedzwiecki A, Khalife J, Abu-El-Ardat K, Roomi MW, Rath M
American University of Beirut, Beirut, Lebanon

Presented at:
104th General Meeting of the American Society for Microbiology, New Orleans, Louisiana, May 23-27, 2004.

Published in:
American Society for Microbiology Final Program, p. 143, Abstract #T-021.

Comment

Adult T-cell leukemia (ATL) is an aggressive malignancy caused by HTLV-1, for which currently there is no proven therapy. Nutrients, such as ascorbic acid, lysine, and EGCG used individually and in combination with other nutrients (e.g., proline and N-Acetyl-L-Cysteine), were effective in inhibiting the growth of virus-infected and virus-negative leukemia cell types. These nutrients were used in concentrations that did not affect the viability of normal cells, but were effective in killing leukemia cells. Our study results confirm our previous findings that a specific combination of nutrients can be a powerful tool in suppressing cancer cell growth and viability, including blood cancers such as ATL.
|
Did you find this post helpful?

User Profile
replied January 14th, 2015
Extremely eHealthy
J,

Thanks for the article titled "Anti-Proliferative Effects of Antioxidants Using HTLV-1 Positive and Negative Malignant T-Cells". I've written in the past about the importance of ascorbic acid (Vitamin C), Lysine, and EGCG (green tea extract) - I take all of these in tablet form daily. While I haven't heard of "proline", I've taken NAC in the past, it's very good and has even been recommended for HIV patients, it has a strong sulfur smell FYI.

Best wishes.
|
Did you find this post helpful?

User Profile
replied January 14th, 2015
Experienced User
I had a CD4 test a few years ago and my immunity was very good. I don't get sick much now either so I assume CD4 is still very good. I certainly am not bragging. I feel like crap like the rest of you guys! SMH

But is this true with you guys too? Is your immunity good? I guess it's the only reason I no longer believe I have something very close to HIV. My symptoms are largely brain related I think...
|
Did you find this post helpful?

User Profile
replied January 14th, 2015
Extremely eHealthy
TRW,

Yes, our CD4 tests will show high counts, but with HTLV that is misleading because unlike HIV, HTLV causes an overproduction of cells (called clonal cells), leading to ATL, cancer, leukemia, lymphoma. Have a clonality test done, and you will see what I mean.

While we are less likely to get colds or flus, we are in inflammation overdrive, where this disease is destroying us but putting our immune system on red alert 24/7. I'd rather have the flu, than die of cancer (ATL), or lose my ability to walk (HAM).

Best wishes.
|
Did you find this post helpful?

User Profile
replied January 14th, 2015
Experienced User
(is there a way to get notifications when you guys make postings to this? It's hard to follow by checking occasionally. Sometimes the responses are higher up on the thread...)
|
Did you find this post helpful?

User Profile
replied January 14th, 2015
Experienced User
Hi pal,

I get emails when you guys post in here. I guess this can be set up in the profile settings page. I also saved this discussion in my Safari Favorites, so I can check it almost daily.

Best
|
Did you find this post helpful?

User Profile
replied January 14th, 2015
Extremely eHealthy
J,

Thanks for the article titled "Anti-Proliferative Effects of Antioxidants Using HTLV-1 Positive and Negative Malignant T-Cells". I've written in the past about the importance of ascorbic acid (Vitamin C), Lysine, and EGCG (green tea extract) - I take all of these in tablet form daily. While I haven't heard of "proline", I've taken NAC in the past, it's very good and has even been recommended for HIV patients, it has a strong sulfur smell FYI.

Best wishes.
|
Did you find this post helpful?

User Profile
replied January 14th, 2015
Experienced User
I know NAC since my mom takes it almost daily. She has diabetes, thus suffering from recurrent sinusitis and finds NAC pretty beneficial.
|
Did you find this post helpful?

User Profile
replied January 14th, 2015
Experienced User
So the Rare Diseases Clinic referred me to a Genetics Doctor. I guess I'll be able to understand something more about what is going on with my body.
|
Did you find this post helpful?

User Profile
replied January 16th, 2015
Experienced User
No good news from the Genetics Doctor I saw today. He told me that there's nothing to do with certain viruses. Also, he said that EBV causes long-lasting damages to a person's immune system - which can lead to severe diseases and compromise your body's ability to face new infections.

Concerning HIV / HTLV, he told me there's no cure at all, even for HIV he said that treatment can only slow down the progression of the disease.

If our problem is infectious, he said that the only treatment we can have - since this is not hiv - is based on a 'cocktail' of immune suppressors (e.g. methotrexate, FANS..). He said that every autoimmune disease (e.g. lupus) is actually a response to viral infections . He concluded by saying that CFS does not exist: it's actually a lot of undiagnosed diseases which the medical industry is unable to explain / cure at the moment.

Basically, I guess there's not much to do.

He's totally aware of the fact that i'm not crazy and also told me that these symptoms have a lot in common with cancer.
He's prescribed some more tests on urine and then we'll see what to do.


I'm 26 years old: you probably understand the way I feel.

Best wishes.
|
Did you find this post helpful?

User Profile
replied January 16th, 2015
Experienced User
Hi J

I appreciate you being so diligent and researching and going to all the doctors. I'm sorry you're not getting answers that could help you get well. You are a young guy. I feel awful regarding what you're going through! Don't give up. I'm praying for you.

PS: Keep us informed about the urine tests.
|
Did you find this post helpful?

User Profile
replied January 17th, 2015
Experienced User
Hi TRW,

Thank you, I really appreciate your support. Well I feel awful regarding everyone else's situation in here: you, TD, ustas, and every other person that is dealing with this horrible thing.

I hope that one day we'll all be able to smile again.

Best.
|
Did you find this post helpful?

User Profile
replied January 19th, 2015
Extremely eHealthy
TRW,

One day indeed.

Best wishes.
|
Did you find this post helpful?

replied January 19th, 2015
Like everybody here I have tested 5 times for HIV the last one being at 6months and all Negative. However, I did some research that left me in doubt that HIV might still be the culprit behind my symptoms mainly becuase my exposure was in West Africa we all know the nasty rare strains that are there. All my tests were rapid tests that claim to detect HIV1/2 AB. What left me worried is the many different strains I read on a website.

What do you guys think about these rare strains?
|
Did you find this post helpful?

User Profile
replied January 19th, 2015
Extremely eHealthy
HTLV.
|
Did you find this post helpful?

replied January 19th, 2015
Tony, but what is your opinion on other rare strains? I’m concerned about type O and HIV 2 because they are more common in Africa.
|
Did you find this post helpful?

User Profile
replied January 20th, 2015
Experienced User
hi regret,

please forget about Hiv. Elisa tests are now 100% reliable and very accurate. They can detect EVERY Hiv strain.

You need to consider other infections - e.g. mycoplasma, Lyme, HTLV, or whatever - as the root cause of your illness.

If you find to be infected by some bacteria, you'll get antibiotics treatment. Otherwise, you'll probably end up to be treated with immune suppressors. Hopefully, your symptoms will improve with no medications.


Best.
|
Did you find this post helpful?

User Profile
replied January 20th, 2015
Experienced User
99. I know how you feel. I was/am convinced I had HIV based on my symptoms. I got banned from a Infectious disease specialists office because I wouldn't let it go. I was wondering what symptoms convinces you you have some strain of HIV. Thanks and God bless.
|
Did you find this post helpful?

replied January 20th, 2015
TestsRwrong,

You are not alone, I finally find someone who understands my pain from the same experience. I got banned from 3 sites and some experts think I’m going insane. The last clinic I went for testing told me “hey don’t ever bother coming back here with a HIV concern, you're negative good bye." I swear I’m not making my symptoms up I have this constant headache, burning tongue, swollen glands, muscle spasm, feeling hot though my temp is normal and mouth ulcers. My headache is non stop and that bothers me a lot. I go years without having a headache before my encounter. My exposure was in W. Africa and that’s why I’m convinced i have a rare strain of HIV or something similar to it.
|
Did you find this post helpful?

User Profile
replied January 23rd, 2015
Experienced User
Hi 99.

I'm so sorry you are dealing with this. The headaches are terrible. I agree. It makes me angry that doctors don't listen because tests don't show anything. They say get counseling. Eat better. Exercise. They are very shallow. If it's not something they learned, it can't exist.

I believe I got it through oral sex. I was naive to think that wasn't a way to get an STD. Of course now that I'm suffering, I research STDs and see how stupid I was to think that!

What a fool I turned out to be. I ruined the life God gave me. A gift turned into a curse because of drinking and the lustful desires that I couldn't restrain while under the influence. I never thought I could cry this much.

Let's all keep in touch and keep each-other informed. Let's also make the most of the time we have left. Putting others first. Trying to salvage our tarnished legacies.

My love to all of you.
|
Did you find this post helpful?

User Profile
replied January 20th, 2015
Experienced User
What do you guys think of informing Judy Mikovitz, PhD, about this forum discussion ?

I guess she'd be interested and maybe could give some proper advice for us all.
|
Did you find this post helpful?

User Profile
replied January 20th, 2015
Experienced User
Hey J. Please do. Thanks
|
Did you find this post helpful?

User Profile
replied January 21st, 2015
Experienced User
Hi friend,
I contacted Prof. Mikovitz. Let's see if she answers.
|
Did you find this post helpful?

User Profile
replied January 21st, 2015
Experienced User
another 'nice' story:

www(DOT)medhelp(DOT)org(SLASH)posts(SLASH) HIV-Prevention(SLASH)HTLV(SLASH)show(SLASH )2428556
"I had a sexual encounter in Portugal with a British female. The sex started protected & ended up not.
I have tested for all STI inc HIV at a UK gum clinic all negative. Tested for HIV right up to 5 months. Due to symptoms continuing & online research I came across HTLV. I have a number of symptoms consistent with HAM (weight loss, twitching leg muscles, lower back pain, bloodshot eyes, dry mouth & gum recession) due to which I requested a HTLV test as a result of concern due to symptoms & having read about htlv. This was carried out a NHS UK hospital & a serology test was conducted. This test was 6 months post exposure. The result was negative. My questions are: would antibodies to infection be present after 6 months? What is the accuracy of serology testing? Are antibodies always present as a result of HTLV infection and would they always be detected? I ask this as literature I have read states low antibody production.

Thanks in anticipation of a response

Regards

Lee "



This 'thing' is spreading so fast.
|
Did you find this post helpful?

User Profile
replied January 22nd, 2015
Experienced User
!!! -- ASYMPTOMATIC HTLV CARRIERS MAY HAVE NEUROLOGICAL SYMPTOMS --!!!

Arq Neuropsiquiatr. 2015 Jan;73(1):73. Epub 2015 Jan 1.

Neurological aspects of HTLV-1 infection in Bahia: results from an 8-year cohort.

Tanajura D.

Abstract

HTLV-1 is the causal agent of HTLV-1-associated myelopathy/tropical spastic paraparesis (HAM/TSP), a disease observed in up to 5% of individuals infected with HTLV-1. However, infected individuals without the disease can present neurological complaints relating to sensory, motor or urinary manifestations. The aim of this study was to investigate the incidence of neurological manifestations among patients with HTLV-1. Method HTLV-1 patients in Salvador, Bahia, Brazil, were enrolled into a cohort study. Results Among 414 subjects, 76 had definite and 87 had possible or probable HAM/TSP at the baseline, whereas 251 subjects had no neurological signs or symptoms. Definite HAM/TSP developed in 5 patients (1.74%). The asymptomatic subjects were selected for analysis. The incidence rate expressed per 1,000 persons-year was calculated. It was 206 for hand numbness, 129 for nocturia and 126 for urinary urgency. In the neurological examination, leg hyperreflexia presented an average incidence rate of 76; leg paraparesis, 52; and Babinski sign, 36. Kaplan-Meyer curves categorized according to gender and proviral load showed that females and patients with proviral load of more than 100,000 copies per 106 peripheral blood mononuclear cells (PBMCs) presented higher risk.
Conclusion
Development of neurological symptoms or signs occurred in up to 30% of asymptomatic subjects during 8 years of follow-up. Female gender and high proviral load were risk factors for neurological disease.

---

To all of you guys: if you have neurological symptoms, it doesn't mean that you have HAM. However, it's important to follow up with a neurologist (I think I'll take yearly check ups from now on), in order to fix neurological symptoms associated with the virus.

I guess treating these 'early' symptoms might prevent HAM from developing.
|
Did you find this post helpful?

User Profile
replied January 23rd, 2015
Extremely eHealthy
J,

I'm glad that you posted this, because in a previous post you stated that you were still okay because you still can walk. This disturbed me because even though you & I are okay now, it doesn't mean that bad things arent happening inside our bodies right now. This is the same "okay" attitude that HIV patients take, i.e. they aren't sick now, so they postpone any antiretroviral medication on the premise that if they are "okay" now, then medication isn't necessary until they become sicker. As we've learned from the HIV epidemic, postponing medication only does more damage, and vice versa for early treatment. We are in a similar boat, except for us, there is no approved medication, just general antivirals that we've discussed many times. This is why I stressed before and now that if you can get your hands on something that has been shown effective against this virus, take it without delay. Just because you can walk with this disease now, doesn't mean you'll be able to walk with it in the future. Every step you take to fight this virus now will be every step you'll be able to take in the future. Bad play on words, but you get my point - start investing in your antiviral health immediately. Don't delay simply because you're feeling okay, that's how the virus wins.

Best wishes.
|
Did you find this post helpful?
Users who thank TonyDewitt for this post: jammy88 

User Profile
replied January 23rd, 2015
Experienced User
hi tony,

Yes I know, I'm not saying that everything's fine inside my body. I know my body and am aware that something's very wrong. I'm taking A LOT of daily supplements and have overall improved.
I'm trying to understand what I can do. I've only been proposed immune suppressors so far. I don't think they're something good for one's immune system. So I'm still waiting to find a doctor who is willing to treat me 'for real', aiming at the cause, rather than at the symptoms. Cuz I think immune suppressors would expose me to lymphoma/leukemia more easily. Also, I'm getting many new moles on my body. I read somewhere this can be due to immunodeficiency. I guess this is not a coincidence.

However, the main point is the following one : I need some tests to show SOMETHING (at least some altered markers, you know what I mean, like IL-6, Cd-4 or whatever), cuz otherwise there's no way to get proper medical treatment.
|
Did you find this post helpful?

User Profile
replied January 23rd, 2015
Experienced User
Oh btw Tony,

It wasn't my intention to disturb you. I'm sorry if I did. We're all in the same boat and I'm not underestimating this disease. I know it's real, I can see it with my eyes every single day when I look at my parents - at how their faces have changed so fast, like mine, at how they sleep in the morning like never before, etc…

This is my personal Hell, and I'm living it day by day, praying that something good will happen - sooner or later.

I will never stop thanking you for everything you did for the all of us. I would have felt completely lost without your advice about this disease.

Everything I write here is to give a positive contribution to all the people like you and me, who are living this horrifying thing. I'm gonna be honest with you: HIV would have been much better. We would feel totally fine and have a very specific and functional treatment. However, we got this disease and now it's up to us to be positive towards the future. Because there must be future in our lives. I refuse to consider this virus our end.

All the best.
|
Did you find this post helpful?

User Profile
replied January 23rd, 2015
Experienced User
I never thought I'd agree that I wish I tested positive for HIV. We'd all be better off because we could be getting treatment. How bad off are we wishing we could test positive for a horrific disease like HIV-AIDS?! I can't take much more of this.
|
Did you find this post helpful?

User Profile
replied January 24th, 2015
Extremely eHealthy
TRW,

You're not the first to wish that, I recall a few years back Scared49 also wished the same. Logical, considering that 30 treatments exist for HIV and nothing exists to treat this.

Best wishes.
|
Did you find this post helpful?