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Reged: 10/12/09
Posts: 3
for hiv- people with long lasting symptoms
      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)

Post Extras: Remind Me!     Notify Moderator

Entire thread
Subject Posted by Posted on
* for hiv- people with long lasting symptoms Jambasher 10/16/09 09:54 AM
. * Re: for hiv- people with long lasting symptoms babboo   03/19/10 11:25 PM
. * Re: for hiv- people with long lasting symptoms iknowigotit   02/15/10 04:42 AM
. * Re: for hiv- people with long lasting symptoms unleadedcoffee   01/07/10 11:16 PM
. * Re: for hiv- people with long lasting symptoms Sivideret   10/17/09 03:05 PM
. * Re: for hiv- people with long lasting symptoms Jambasher   10/22/09 01:27 PM
. * Re: for hiv- people with long lasting symptoms tonydewitt   06/21/12 07:36 PM
. * Re: for hiv- people with long lasting symptoms tonydewitt   08/20/12 10:51 PM

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