Medical Questions > Conditions and Diseases > HIV and AIDS Forum

Certain HIV positive, but negative tests (Page 41)

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....

July 30th, 2012
Experienced User
Ya I beleave there is a undelying cause to the candidia problem. I was going through the testimonials on the " sore throat " forum and came across 2 or 3 other people with this joint cracking problem. For example 2 other people have this problem with their sternum cracking. After I started to feel different a while after my exposer I noticed this gray looking circle kind of poked out in the middle of my chest, so I pushed on it and it poped back into place. Ever since then I've have to continuously crack it or pop it back into place. My thumbs get stuck straight now at night when in bed sleeping when I don't move them a lot. Then when I go to bend them "crack"! All my joints crack a lot more now, but those 2 are the weirdest and to find other people who have developed the same, along with many of my other symptoms, tells me right there that there is probably some underlying visus going around, that hip guy that leads the forum knows his stuff on treatments for all sorts of symptoms, so that what I'm trying to do is treat my symptoms to feel better to fight better to find the problem. Gonna call the doc again today to get feedback and discuss my"negative test result". Good luck guys qhang in there . Also look into the leaky gut thing, can make you very ill, and maybe think about seeing a naturopathy doc.
|
Did you find this post helpful?

User Profile
replied July 30th, 2012
Extremely eHealthy
DFrank,

Definitely arthritis (increased cracking) can result from either HTLV or Lyme infection, I have all of my joints cracking more than ever. And definitely everyone who is majorly sick should try your Candida therapy approach - a reduction in symptoms is such a huge relief (physically and mentally), I remember when I couldn't sleep on my side because the pain was unbearable, and nowadays I'm not as sore thank God.

My main concern is the fear of losing my ability to walk - has your walking improved?

When you talk to your doctor to discuss your negative test results, please see if you can shoehorn in a HTLV PCR test please.

Best wishes.
|
Did you find this post helpful?

replied July 31st, 2012
Tony did you asked Dr. Jay Lalezari that what is the window period of HTLV1/2? & as you now I tested 24 times hot HIV do you think I need to be tested for HIV with PCR DNA / RNA test or not ?
I am still suffering with thursh, in night time when I sleep my legs hurt allot, and I feel no energy in my legs, plz ask someone how long we need to keep working for HIV or HTLV? It might be not any one of them, it might be something els we are ignoring?
I read many places if some one suffering with symptom so at that time or soon after that time he/she should have antibodies I mean if you & me or someone have swear bunch of symptom due to any of them and our symptoms are now more then 6 month now, do you think it's not enough time to some one build antibodies in that time? I read a swear stress can do allot too, even if you stress allot you can have thursh & heart attack And allot more serious things.
What was your risk, why you did not test for CFS or CMV up to know, do your doctor belive on you that you have some problem or not? Do you have shingle rash or any other skin problems? Do you only have thursh once in 8 month, how long after your risk you start getting thursh? How long after your risk you start getting symptoms? Do you belive is it can be something new like HIV? Do you belive some some people never buid antibodies for HIV or HTLV ? God bless us but even if someone diagnosed for HTLV what is the benefit ? No cure no medicine such a big shame for this world? Sorry for long questions I am so stress & hopeless today.
|
Did you find this post helpful?

User Profile
replied July 31st, 2012
Extremely eHealthy
onechanceplz,

(1) Dr. Jay knows nothing about HTLV, he didn't even know that 25 million people have it.

(2) We DO NOT HAVE HIV - none of us EVER tested positive for it! Unlike HTLV, the window period for HIV is VERY specific. We don't have HIV, we don't have HIV, we don't have HIV!

(3) We could have anything EXCEPT for HIV - we could have HTLV, we could have Lyme, we could have DFrank's mood virus, we could have systemic Candida, H-Pylori, etc. The list goes on forever!

(4) My risk was sex, just like everyone else here.

(5) I am CMV negative.

(6) I have not been tested for CFS, I didn't even know that a test existed for that.

(7) My doctor wants me to see a psychiatrist.

(Cool I started feeling sick immediately after I was infected.

(9) My skin problems are seborrheic dermatitis, meaning that my skin gets overrun with oil (sebum) & yeast, which is common for people with immunodeficiency. I had to switch my shampoo to one that contains pyrithione zinc in order to get the problem under control.

(10) The inside of the right side of my mouth has a growth that might be thrush, I'm not sure.

(11) I do NOT believe that some people never develop HIV antibodies.

(12) I do believe that some people do not develop HTLV antibodies (read Sadowsky's article from TheBody site again).

You're right, even being diagnosed with HTLV does NOTHING for us because NO treatment exists. So if all of us do have HTLV, what should we do?

(0) Take homeopathic treatments (Fucoidan, Tumeric, etc.) to stay alive & feel better.
(1) Sign petitions like the ones on the SignOn.Org site.
(2) Join sites where HTLV people are joining together (HTLVhelp, Facebook, etc.)
(3) Push for clinical trials for treatments from researchers and drug companies.

Doing these things is much better than spending every day with stress & hopeless. If you want your life to have a purpose, then lobby for treatment & a cure of HTLV. If people like Dr. Jay Lalezari don't know that HTLV has infected 25 million people, then we have much work to do.
|
Did you find this post helpful?

User Profile
replied July 31st, 2012
Extremely eHealthy
Dalton,

I just saw your post - it got delayed because you put a direct link to TheBody site in your message - from now on if you omit links in your posts, they won't get delayed.

Like I've written before, we are all concerned about our health, and no one has given conclusive proof of what is really wrong with us. But we all know that we don't have HIV, which is the best news, and we really need to be very grateful for that. Testing for HTLV or Lyme is notoriously inconclusive, and yes, something new could be making us sick, but it's still not HIV.

I've spent years reading (and posting questions to) TheBody site - Sadowsky has written on that site that HTLV antibodies are hard to test for. The *real* problem is that HTLV is problematic because doctors won't routinely test for it. When I asked Dr. Wohl on TheBody site why prisons don't test for HTLV, his response was that it was useless to test for HTLV because there's no treatment - note that he didn't say "because it's rare". Research papers give clues to where people have HTLV, including populations in the southeastern United States (where you are?), New York City (where I am), southern California, etc.

None of us wants to have HTLV, but the symptoms fit, especially for me having the back & leg problems. If you can find a doctor willing to provide hyperthermia and/or azacytidine treatments, and then you feel better, then God bless you.

Best wishes.
|
Did you find this post helpful?

User Profile
replied August 1st, 2012
Extremely eHealthy
Homeopathic treatments
Regarding homeopathy, I just came across this on the "homeopathyandmore" site:

HTLV could cause dryness, and function disorders of tear and Salivary glands with weakness and paresis or hemiphlegia or spastic para-parasis. HTLV myelopathy include:

Motor and sensory changes in the extremities Spastic gait in combination with weakness of the lower limbs Clonus, Bladder dysfunction and bladder cancer, erectile dysfunction.

The medicines of value prima facie are
Rhus Tox
Belladonna
Causticum
Gelsemium
Arsenic Album
ARGENTUM NITRICUM.
LEDUM PALUSTRUM
HYPERICUM
LATHYRUS
MERCURIOUS
AVENA SATIVA Q as tonic

The first thing we need to do is to remove the sting out of the virus, because what we might be in face to face could be a situation + a virus making use of the situation. So the first thing is to remove the virulance out of the virus. In the case here the symptoms indicates towards HTLV. And symptomatically this virus has more to do with conjuctiva of the eyes and that is where the choice of Rhus Tox and Belladonna are prominent. Rhus Tox is for all virus and should invariably used in the beginning of any treatment. Natrum Mur is the foundation of the body, the very frame of the body sustains with Natrum Mur. The earth will not be earth without Natrum, the human body will not be human body without Natrum Mur. That is the general constitution of all human body and generally everyone needs natrum mur. Causticum and Gelsemium are indicated towards the results, the weakness, the parasis, the hemi-aspect. The involvement of throat, tongue, the dryness. Arsenic is included to look into the detoxification particularly if lead is involved, Argentum Nitricum is given in capitals because it is fundamental and specific to this Syndrome. If a nerve demyelineation is taking place that is where Lathyrus comes into play alongwith mercury. To improve the strength of nerves is where Hypericum is suggested where as Avena Sativa is specific to weakness of limbs on the right side and therefore prescribed as tonic. with best wishes.
|
Did you find this post helpful?

replied August 2nd, 2012
Experienced User
Out of everything that I've been, the one thing that I've never had any problems with my eyes at all. Even the dr's. have said, and the hive/aids hotline have told me that everything that I'm going thru is leading to more of HIV than anything, plus I was also at high risk, but what they can't figure out is why my test keep showing up negative. Plus with HTLV you do not get the very same symptom as HIV. And Thebody.com also states that not many people at all even has HTLV. It's only been found in Japan, and another country. That's why the U.S hasn't tried to find a cure for it. Cause it really hasn't been found in the U.S. Things do change over the years, so can it be possible that for some reason, something could be causeing the antibodies not to show up on an HIV test. Or maybe the test isn't as strong as it use to be. I called the HIV/Aids hotline myself, and told them what I'm going thru, and they even told me to get my cd4 cells, and t cells tested something like that, just in case if the antibodie test isn't working like it should be...I don't know, but that's what they told me.
|
Did you find this post helpful?

User Profile
replied August 2nd, 2012
Extremely eHealthy
Dalton,

You can get the test to count your T-cells, like I did, and it will show that your T-cells are high, not low. A high T-cell count is a symptom of HTLV, a low T-cell count is a symptom of HIV, it's that simple. HIV destroys T-cells and HTLV causes T-cells to overproduce, eventually leading to T-cell leukemia.

Again, no one on this forum has HIV, we've tested too many times and for too long a period of time. If you're in a hot spot for HTLV (New York City, Southeastern USA, California, Carribean, South America, Japan, etc.) or had sex with someone from those areas, then you have a chance of getting HTLV. It can be acquired through oral sex, so even that alone can transmit HTLV. You will never test positive for HIV, but someday you might test positive for HTLV.

Best wishes.
|
Did you find this post helpful?

replied August 2nd, 2012
Experienced User
still here,,,,, still sick
i see this forum is starting to lose faith.. i myself have lost faith and hope.. i can feel ok one day then the next every symptom is back and i get back in this sick mentallity that i have Hiv.. im going in to get tested for HIV in two weeks that will be 6 month + 1 week. i hate feeling this way.. i will also ask for other tests becuase i feel my digestive system has changed so it could be like a bacteria in my digestive track or something.. i will keep testing till i rule out everything 100%

tests i will request...

HIV
SYPHILLIS
HEP A,B,C
MYCOPLASMA

thats all i can think of Mycoplasma is a std that is not really known yet so i will requst it..

symptoms to date are..

Sore Throat 5+ months
stiff neck
head hurts in certain spots
joint tendons are sensitive
lymph nodes on neck
congested head
|
Did you find this post helpful?

User Profile
replied August 2nd, 2012
Extremely eHealthy
D-man,

You don't have HIV, none of us have it. Like Ustas said, either look for another cause or be happy that you don't have HIV.

Best wishes.
|
Did you find this post helpful?

replied August 3rd, 2012
Experienced User
D- man don't loose hope, my digestive problems have improved greatly. I used to have diharea and skinny soft different colored stools. Now they are normal. I also had bad adonamal pain. I think I had leaky gut syndrome, and ibs, due to some virus, but the candidia diet and supplaments have worked great for me. Now my stools are solid and back to normal size and color. Also my abdominal pain has mostly went away. I feel tons better. Read up on leaky gut, candidia. Tony, I also had very weak legs at one point, shaky and felt like they were gonna collapse from underneath me. That symptom had gone away for me, and am now able to exercise, run and walk good distances. Hang in there guys. Try to research remedies for your symptoms, I do believe we have some virus thats caused us to get sick, but now I seem to be getting better, wich is consistent with the " china HIV like virus that is going around, but it's not HIV.
|
Did you find this post helpful?
Users who thank dfrank for this post: TonyDewitt 

replied August 3rd, 2012
Hi dfrank & tony as my last test after 7 month for HIV & HTLV were negative with very bad cd8 result & cd4 &cd ratio of only 0.79 normal people belive to have 1 at least , any ways I emailed one of the Dr of HTLV department of st. Merry hospital I do not want to mention the name of Dr here because I am not allowed, and do not want to break his trust, the answe he given me in reply of my mail is as under. I tested from st. Merry hospital London twice for HTLV & 3 times for HIV with in 7 month, last tests for both were after 7 months, here is Dr reply of my mail.

I have reviewed your notes and results.
The serology test for HTLV-1/2 employed is highly sensitive and your tests have been repeated well past the window period. You can therefore be reassured that there is no evidence of HTLV-1/2 infection. Serology is the best test for the detection of HTLV-1/2 infection, better than PCR.
You will also be aware that neither HTLV-1 nor HTLV-2 infection has been associated with a seroconversion illness so these infections would not account for the symptoms that you developed two weeks after your perceived risk.
With regard to your blood tests, the CD4 count is normal. The only reported abnormality from the tests that the private doctor requested is the CD8 count which is slightly above the normal range. The normal range is based on 95% of the healthy population which means that 1 healthy person in every 40 will have a CD8 count greater than the normal range. The CRP, a non-specific marker of inflammation, is normal.
You have low levels of Vitamin D. Vitamin D is an important component of the immune system and I suggest you request Vitamin D replacement therapy from your GP.
I hope this helps you to understand your results.
Yours sincerely
@tony @ dfrank what is your view on this reply of Dr.
God bless us all.
|
Did you find this post helpful?

User Profile
replied August 3rd, 2012
Extremely eHealthy
DFrank,

I am glad to hear that you are feeling better - my lower back is so bad that it is making walking difficult, and even turning over in my sleep requires me to grab onto furniture. I am really worried that I have the HAM syndrome related to HTLV infection.

onechanceplz,

I am in the same boat as you, I've tested for HTLV at 4.5, 7, and 8 months, all negative. I feel like my back is getting worse and that I am going to lose my ability to walk. Your doctor did a nice job of explaining your test results to you, but again I would say that if it's possible, both you & DFrank should get a PCR test for HTLV just to know that you've both tested for HTLV thoroughly. I'm not saying that your doctors don't know what they are saying, but a PCR test for HTLV at this point isn't going to kill anyone. Whatever this disease is, we want to be able to say that we tested in all possible ways for it. Ironically, doctors have no problem giving a PCR test for HIV, but are reluctant to give a PCR test for HTLV, which again makes me think that if HTLV is so rare, why not take a PCR test for it? I'm tired of the political white wash by the health care industry, and I'm tired of being sick.

DFrank, I hope that someday I will be able to walk & run like you - thanks for the support & encouragement. I know you've been in this four times as long as I have, I don't know how you made it through this hell.

Best wishes.
|
Did you find this post helpful?

replied August 3rd, 2012
Tony
I am sorry to read about your bad back, but belive me, I have more symptoms then you, with bad cd8 and t cell results, you still have hope you are 8 month negative even with PCR test, you can belive your at least PCR test, did you read my Dr. Reply is it not gave you a hope? He told me I am out of window so it mean you are well out of windo too, with PCR test too, I hope you will fine.
Try to change your bed or try to sleep on floor it might help, and please do your cd4 cd8 counts too or do full blood count if you like.
You all are in my prays too, God bless us all.
|
Did you find this post helpful?
Users who thank onechanceplz for this post: TonyDewitt 

User Profile
replied August 3rd, 2012
Extremely eHealthy
D-man & One,

No faith is being lost - we all know that we don't have HIV, that was the purpose that brought us together here in the first place. We might have varying degrees of being sick, but no one has HIV or AIDS thank God.

I took the time to go back over FORTY-TWO pages of postings & contact everyone that we haven't heard from anymore, so far only Ays111 & AdviseMe have replied. Ays is going to try to get tested for HTLV and AdviseMe is suffering from back & leg pain like me.

Best wishes.
|
Did you find this post helpful?

User Profile
replied August 3rd, 2012
Extremely eHealthy
For those of you in the UK, the Imperial College of London performs the following tests (along with their costs):

(1) HTLV DNA qPCR - HTLV DNA viral load measurement for diagnosis and monitoring of disease in individual patients infected with human T-lymphotropic virus types 1 & 2. Cost - 80.

(2) HTLV typing by PCR - discriminate between HTLV-1 and HTLV-2 infection. Cost - 70.

(3) HTLV clonal analysis - facilitate rapid detection of Adult T-cell Leukaemia/Lymphoma. The method can also be used to monitor therapy response and provide early detection of relapse/remission. Cost - 130.

The first test is the most important one; I found this information on the imperial.ac.uk site.

Best wishes.
|
Did you find this post helpful?

replied August 3rd, 2012
Experienced User
hi guys, tone , d-man , one chance , Delton , Dfrank & everyone over there,
it is me Casper, i want to update you all with my symptoms & The test's results :
1- i still have all the symptoms that i had since last August , but now it is less diarrhea, almost gone , also my skin looks much better than before , BUT my throat still un-believably sore , for a long time , with three lymph nodes n my neck , add to this that my tongue keep on developing pimples & patches in my mouth ,cheeks from inside most of he time.
2- the Good News - my GF which is my only ^ first sex partner, she got tested for the following tests yesterday : HIV (AG\AB),HTLV,Herpes 1,2 , Hep B , C , Syphillis , HPV , CMV , Clymedia & Ghonerea . All Negative , All Clear
she only found some old nfection of EBV since a looong time , * , it have been 1 year snce our first exposure..
i'm just to tired of the sore throat & the tongue sores.
wish you all the best guys,keep hanging here.

Special Thanks to Tony Who Give All His Time, Money , Effort & Energy to find what we all suffering from.
|
Did you find this post helpful?
Users who thank casper012 for this post: TonyDewitt 

User Profile
replied August 3rd, 2012
Extremely eHealthy
Casper,

Thanks for the recognition - I appreciate that. I hope you & your lady continue to improve.

Best wishes.
|
Did you find this post helpful?

replied August 3rd, 2012
@Tony I read that and I am willing to pay for the test but imperial college refuse me to do these test for me, even I paid 110 privately for HTLV antibody test, and I am going to pay again as a private test for PCR HTLV it will cost me 365 for one test why I do not do from imperial college in only 80 another thing st. Merry hospital is part of imperial college and that is the same place where they do PCR test, but in reality they do not do PCR test until HTLV 1/2 antibody test positive.
The dr who checked my results and reply to me is a Dr of imperial college, can you find any other place they can do PCR test for me in London
Many thanks for time to search but they already refuse me even I offer to pay for that.
Best wishes
|
Did you find this post helpful?

replied August 3rd, 2012
@casper, are you dealing with all this nearly a year? I have swollen lymph node under jaw too, keep coming and going with rash and other skin problem, my main problems with all that I have oral problems and swear pain in my upper legs, it is very difficult to walk and specially can not sleep in night time, it hurts allot, what time you were tested last time? And did you tested PCR test for HTLV or not did you ever done cd4 cd8 counts?
Best wishes
|
Did you find this post helpful?

replied August 4th, 2012
Experienced User
Tony, I'm sorry to say it, but it seems like you have studied HTLV a lot. If you would have read everything that there is to know about HTLV, than you would have known that 95% who is infected with HTLV, don't even know it, cause they don't have any signs or symptoms. As a matter of fact, they are perfectly well. That is a very big percent. That pretty much says that only 5% people in the world will show signs and symptoms of HTLV. Plus, to detect HTLV it takes a special kind of blood test that will detect HTLV shortly after being infected, and it can take up to 3 months after being infected for HTLV to show up in the blood. That is what I found out online. Now, back to my problem. I was looking up HIV rashes, and it brung up pics on them. They had this one where his skin was pilling on the palm of his hand, it was a bunch of circles where the skin was pilling, and that the same exact thing that I was going thru a few weeks ago. I have an apointment to see a new Dr. this thursday, and I'm going to see if he'll do every STD that is out there, and another HIV test done, plus I'm going to see if he can check my cd4 count checked, and if everyone of them comes back negative, then I'll see about an HTLV test, although I truly believe that it isn't HTLV.
|
Did you find this post helpful?

User Profile
replied August 4th, 2012
Extremely eHealthy
Dalton,

Good luck on your testing and please let us know what the results are.

People who are immune suppressed (whether with HIV, HTLV, or something else) do develop the peeling skin that you mentioned - some people get it on their face, feet (Ive had both), even hands. Those skin problems are a results of Candida (yeast) out of control because your immune system is suppressed.

I agree with you that not everyone with HIV or HTLV has symptoms - let's go with your 5 percent value. I've had sex with 20 people, and none of them are running to the doctor, except for me, so there's your 5 percent. If none of us had any symptoms, we wouldn't be on this forum looking for answers, so in effect we ARE the 5 percent!

If I go by Richard Engnath's experience, he tested HTLV negative at 4 months, but tested positive later. I tested negative at 8 months, but I am going to continue getting tested every 2 months (so 10 months, 12 months, etc.). One guy who contacted me via email (Alberto from Italy), said that it took him TWO YEARS to test positive for HTLV, and ONLY by PCR (not by antibody!). He & his wife & his young daughter all have HTLV and are suffering with it terribly with leg & back problems. This is why I asked all of you to get an HTLV PCR test.

Best wishes.
|
Did you find this post helpful?