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HIV Transmission and Education >> Am I Infected?

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Reged: 10/12/09
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for hiv- people with long lasting symptoms
      #248020 - 10/16/09 09:54 AM

And for anyone interested. Its my first post. Great site, helping probably millions of people. Wonderful work!

This is maybe not the right place to do this but still:

There seem to be the rather frequent occasion of people suffering from long lasting symptoms, many related to HIV and still repetitively testing negative.

Especially with people complaining of

other mild neurological symptoms
Leg weakness
Dry eyes
Dry mouth
Dry skin
Aphtous ulcers
Periodontal disease
Joint paint
Generalized swollen lymph nodes
Persistant Rashes resistant to treatment
Palmar/plantar erythema = red hands and feet
Concentration difficulties
Shortness of breath
Chronic cough
Night sweats
Weight loss
Urinary tract infections and so on.
Some times also opportunistic infections like candida

You should think about HTLV infection. Even though it is considered mostly an infection where only few percent of the patients get symptoms, more and more studies from the areas in Brazil and southern america in general are showing that it is related to a lot of smaller problems and not only Leukemia and myelopathy.

Understandably the list is long, but still often people who have some of the symtoms have more. Especially the amount of small neurological symptoms and some oral symptoms that one would expect much later in the course of HIV are sometimes present early. Also with Palmar erythema, which would extremely rarely present it self in an early HIV infection

One aspect here is that most of the problems caused by the virus are though to be caused by the virus itself and autoimmune reactions caused by it. And even though some of the symptoms would seem like opportunistic infections caused by weakened cellular immunity, they are often though to be caused by the virus itself or because for example of insufficient saliva production in the mouth, dry mucous membranes in general, the bladder having problems eptying fully etc.

It seems some people are reporting a lot of these symptoms, many times when palmar erythema = red palms is associated, people seem to go for "HIV/Hepatitis C co-infection" asking about late seroconversion etc. having read about the "red fingers syndrome"

I have been researching this matter for a while now, since I see it a serious health problem, with a small chance of expanding. I also unfortunately happen to sufferer of many of the afore mentioned symptoms and have HTLV infection. The symptoms are persistant and started slowly after the beginning of the infection. In most cases so mild that it takes years to develop any problems even if they arise, but some people get symptoms a lot faster. I dont read about these diseases anymore. I know more than I would like to.

Just something to think about. It is an infection spread like hiv, but since its largely only found in endemic areas, which apart fom Japan are rather poor, not a lot of information about it exists outside those areas. Very little is known about the science behind it and there is no specific treatment like for HIV. Especially with the false assumption that most carriers are completely asymptomatic and if they are not they are very very ill stated in many places can cause serious problems preventing the spread of the virus since most doctor who have even heard of it would not think that a test would be relevant. That is also one of the reasons the need for research is not considered that great.

I know this forum is not the place to rant about such things, but anyway, increased awareness is good. And since this is an infection so rarely screened for, it is bound to spread a little in the states, going relatively unnoticed.

The actions that limit the spreading of HIV limit the spreading of HTLV as well luckily, but even then people get infected with HIV every day.

Not to scare people, just to make a point. This has devastated the lives of many the life of many many others will be affected.

Then my story. Read on if into drama. Otherwise, just get tested if you feel like it might be warranted. I generally dont like people listing their problems on the internet. But now I know that when one has problems, one wants to list them sometimes. I dont want to list them to my family or friends to make em feel bad. Instead if listing them here would help at all, just with the hope that one person get spared from infection or the life long/ years long mental strain of being clearly sick, thinking its hiv and repetitively testing negative, being told by doctors to get counseling. In many cases HTLV might not be the cause of the problems, but then again, its said to infect around 20-25 million people world wide and some of them experience more problems than others. That must be more common than "late hiv seroconversion, rare strain or body not producing antibodies" as many people are speculating here. When I got sick, both me and my gf got tested for hiv, after that I knew it was not hiv. No need to obsess, tests are good.

I happened to be unlucky I guess, very much so. and suffer from a large constellation of symptoms straight from the start. Having been completely healthy before, now in half a year after the infection having lost 7kg, have constant dry eyes and mouth, dental cavities, rapidly receding gums, chronic headache, problems urinating, impotence, hand tremor, chronic pansinusitis resistant to treatment that had to be operated on quickly because it spread to the sinuses around the eyes and deeper in the head. shortness of breath. I have also developed anhidrosis/hypohidrosis, I can barely sweat at all anymore. And this too is progressive. I get hot very very easily. I have night sweats every night, but without sweating. So I just wake up, feeling very hot and having tachycardia, feeling like my body is trying to sweat but no sweat comes my skin stays dry. So I lie awake for 2 hours without the blanket or take a cold shower, big deal. Cant do sports anymore either, my heart rate rising to 150 from just walking. I used to be a national level athlete. I was studying, doing great, loved my life, every bit of it. I was 22 when I got this, from my girlfriend, we had both been tested for all "possible" stds, just because we wanted to be smart. I dont know wether I got the transmission in oral sex, or inproperly used condom, I dont care.

Physical problems can be accepted, if one has good friends around them and a realistic attitude.My biggest problem is serious progresive problem concentrating and remembering things. I dont really feel like talking to people anymore since, my attention is has problems understanding them. Im having great difficulty reading as well, I read one paragraph and forget what it said, read it again again and so on. Used to be an A-level student. Just writing this was a nightmare, but if it helps anyone its worth it.

Because of all this there is not a single aspect of my life I can continue. Studies, relationship, sports, future plans. I have accepted this and try to do things I still can, hopefully at least one of them matters. This post might not help anyone, but it just might. Moderators delete, if you wish.

I dont write to get pity, I understand that me getting this unlucky doesn't make the disease anymore serious wolrd wide. And as with HIV and other stds one often brings them on themselves by their actions. Yet I can say I have developed a great sympathy for all HIV sufferers around the world having read about these things. As with all people who are sick. No one deservers this kind of stuff.

In summary the problem here is that of a very very severe illness, not as severe as HIV, but in the western world, where HIV treatment is available, the problems caused by the infection may pose similar problems to people infected that a treated HIV infection would. It has to be adressed that when the problems become serious, no treatment to actually reduce the viral load or so is available yet.

Keep yourselves protected..

Edited by Jambasher (10/17/09 07:28 AM)

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Re: for hiv- people with long lasting symptoms new
      #248051 - 10/17/09 03:05 PM

I wanted to thank you for your input. I'm sure it will be of help to many, even as a warning. So your effort was not in vain. Thank you!

May I ask you, how does htlv affect brain functions? Is anything known about this? Is there any possibility you might be under a lot of stress also because of your infection and that may be affecting you? Depression and stress can be very imparing, as well as medications to combat it (I was hooked on sleeping pills that almost turned me into a zombie at one point; I weaned myself with meditation and visualization and got my brain back).

Just a thought.
I wish you the best and hope you regain your health.
Fight, you're too young.

God bless.

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Re: for hiv- people with long lasting symptoms new
      #248122 - 10/22/09 01:27 PM

Thankyou for nice words. I will certainly fight.

I do not know the specifics of htlv infection and brain function in "asymptomatic" carriers. Back in the day I was trying to find out stuff about what I had I noticed some articles on it affecting cognitive skills in some way. And that htlv infected people, asymptomatic, and those with spinal cord disease performed noticeably lower on tests measuring neurological aspects of attention, concentraqtion and short term memory etc. and had some peculiarities in MRI's

I have seen some people complain of the same thing with very similar symptoms writing on hiv forums testing repetitively negative.

All I know is that couple of weeks before I first got sick, when I didnt even know about htlv, and didnt suspect any std or me even being sick since I thought we both were std free after testing some months ago, I started noticing I couldnt watch a movie to the end without loosing my intrest/ zonig out, then later half an hour episodes of tv serieses. Was very irritable, thought it was strange, because I had just started a holiday and was happy about it.

Then I got sick with I guess some kind of "ARS" and for maybe 2 weeks felt very confused, had strange crying spells without reasons and I guess some panic attacks or something without any history of such. Then I got better and the mood things went away, though that was it. But I noticed my memory was not normal, I could hardly focus on reading a book I had started before getting sick, was well into it and wanted to continue. I thought I was just tired from having been sick. Then the symptoms started coming back and worsening slowly and my concentration got worse. Im more calm pshycologically about this now and dont stress really. Im accepting not being as healthy as before, and not as sharp, but my concentration is ridiculously bad I forget words out of sentences and have to ask people to often repeat many times I walk into rooms constantly and dont remember why, try to and just stand for couple minutes Have not been able to follow tv or books. Im practicing, playing some memory related games and so on, meditating. Hasnt helped much, but without them I might be even worse off. Its funny, its kind of difficult to be stressed soon losing the train of though and not continuing to stress about whatever it was.

I guess for me the best way to describe this is that I dont feel more stupid, just slower and my mind has a hard time taking in info, processing it and combining to previous experiences. Get distracted very easily by backround noise, my head doesnt know where to focus in a way.

Havent had an MRI, will soon I guess, but I doubt its gonna be too interesting.

I can hadle the bad teeth, blurry vision and not sweating, would like to get my thinking a bit better, would make life a lot easier to continue in the sense of having one aspect "full"I hope at least my body adjusts and it settles down a bit after the initial puch of getting sick. Symptoms are worsening so far though.. Maybe I will try anti depressants at some point, if they would help, just to rule that out.

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Re: for hiv- people with long lasting symptoms new
      #249031 - 01/07/10 11:16 PM

Hi Jambasher

Thanks for taking the time to write this,it was a great read and i apreciated it for what thats worth


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Re: for hiv- people with long lasting symptoms new
      #249435 - 02/15/10 04:42 AM

I knew there was something wrong. I had a feeling there was some type of new std that either wasnt discovered or hasnt had as much attention as hiv. I have posted on several sites all the tests i have done since my recent exp on 11/20, i just completed 12wks and have had nothing but negatives, i have had 1 DNA PCR, 2 NAAT test @ 5-7wks, HIV RNA PCR at 11 1/2 wks, all have been non-detectible, also i have had a number of AB test and all negative up2 12wks. I recently started to believe i have a new strand of hiv that wasnt being picked up by the test. I do remember one day going into a website for HTLV and i noticed how symptoms posted there were very similair to HIV, specially with the Lymphadenopathy that i am exp, as well as issues with my gums, headaches, white coated tounge (which i have been told by 3 docs that its not thrush) those are currently my main persistent symptoms. So i will continue to test for hiv till atleast 6months. Now i just dont know which disease is better to be infected with. But thank u very much for the info. if u have a chance to get in touch with me, my email is

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Re: for hiv- people with long lasting symptoms new
      #249811 - 03/19/10 11:25 PM

hi Jambaster,
please forgive me a question. I exactly match all your symptoms, and I thought several years ago to make the HTLV text; the first text was positive, but it has never been confirmed by the following ones. Furthermore, I red it's possible that there are some htlv strains not yet identified, with similar effects on health, and hipotetically linked to the cases of htlv-negative tropical paraparesis. So, can I ask you if you have these three symptoms in particular?: 1) pain and swallowing also in the higher tract of column, between neck and head; 2) red face, expecially cheeks and eyelids; 3) persistent diarrhoea, with a pain around the liver zone.
Thank you very much, and best wishes

p.s.: I red that htlv patients can try a treatment with Depakote, that actives the virions and helps the immune system to identify and eliminate the infected cells. If you are already taking depakote, or if you will begin to, could you be so fine to tell me if you have good results? tx

Edited by babboo (03/20/10 07:32 PM)

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Re: for hiv- people with long lasting symptoms new
      #263981 - 06/21/12 07:36 PM

I just wanted to say THANK YOU for posting this - other sites like this do not even allow the mention of HTLV, never mind testing for it. I have been suffering with similar symptoms for seven months, initially going through the odyssey of HIV testing. Doctors are completely ignorant about HTLV and testing for it, I even had to suggest testing myself for it. For some reason, HTLV has been swept under the rug and completely forgotten by the medical industry. Even when it's recognized, it's sugarcoated as an asymptomatic, rarely fatal illness, not the miserable illness that you've described. I've started online petitions for recognition of HTLV as a public health issue, and also for clinical trials of Azacytidine to treat and possibly cure HTLV, as was done with a patient in Greece. Best wishes to you and thanks for being brave enough to come forward with this, so the rest of us can stop thinking that we are crazy for not feeling well.

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Re: for hiv- people with long lasting symptoms new
      #265623 - 08/20/12 10:51 PM

PS: Tofacitinib is about to be approved by the FDA for arthritis, but since it is a JAK inhibitor, it is also effective against HTLV, HAM, and ATL. I would seriously recommend that you speak to your doctor about trying this drug.

Edited by tonydewitt (09/19/12 03:18 PM)

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