What can be the cause ?

[overstressed]

Dear,

10 months ago I had a high risk-contact with an african prostitute. At the time, she had her period(which I did not know) and I had oral sex with her. The intercourse was with condom. Two days after the contact I developed white patches on my tongue. Since then, I have had nightsweats( 6x last then months), my stomage hurt, headache. After some months, my eyes and nose start to burn when my tongue gets irritated. I went to the eye-specialist, and a small inflammation was diagnosed. I got anti-biotics. The burning remains, though.
Recently I discovered that it seems that all muscels in my legs are fading away. I have really weak legs.

Does anyone recognise this ? I have been searching on the Net and end up with HTLV. Ever since then, I'm terrified to death. All my bloodtests(HIV, hepatitis, Syphilis, Chlamydia, Gonnoreah) gave a negative result. Something must have happened, but it's not reflected in the results of the test. So, I think I got infected with something else, that is not tested, or is not known, yet. In my country, testing on HTLV is possible, I think.

Can anyone help me, please ?

Thanks,
overstressed2008

[jack1260]

Hi Overstressed, if you are still visiting this site, can you please share your HTLV test results or anything that you found for causing ailments to u.
My symptoms are same as u . I cant stop thinking of HTV as my match to htlv.

[auntiejessi]

Lets keep all your posts to one thread.  You can pick which one, but lets stick with one.

I don't know enough about EBV to comment on it.  You can easily research it on the net, though.

And since you are on immunosuppressants, I'd think you would want to do everything you could to avoid an infection, and that includes not going to strip clubs, etc.

Aj

[overstressed]

Hi AJ,

thank you for your kind support. Though, I have some news. Yesterday I was with my housedoc for having a blood draw. My values need to be tested because I'm on immune suppressive drugs. Today my housedoc phoned me to ask whether I have been tested on EBV before. Until now, noone tested me on this. What I did not request for, my housedoc did yesterday: he tested me on EBV. And it seems that I was infected with EBV. But he was concerned, because my titers were 1500, where as you test positive from value 300 onwards. It's been more than a year now, and my titer is still high as hell.
Do you have any idea what this means ?

This also makes sure I provided my wife with Lupus, since it can be triggered by EBV...

Thanks,
Overstressed.

[auntiejessi]

You didn't give your wife lupus.  That's not possible.  Lupus is an autoimmune disease, and while it MIGHT be triggered by a virus, you haven't even ever tested positive for anything.

One thing I would wonder at this point is if you have had your home tested for mold, air quality, etc.  I wonder if something in your home isn't making you both sick.

If you are talking about suicide - that's something you need to seek help for IMMEDIATELY.  If you are in Belgium, then google that and suicide hotlines to find some help.

PLEASE let me know how you are doing, but get some answers about your house, ok?  I'd hate to think you killed yourself over something that wasn't even your fault.

AJ

[auntiejessi]

Hi there -

I don't know many of these answers.  Have you asked the doctor?

Here are some links that might help you -

http://healthlink.mcw.edu/article/926056398.html

http://en.wikipedia.org/wiki/Reiter%27s_syndrome

Aj

[overstressed]

Dear Aj,

I have had the second opinion and they agree with the first one, mainly because my diagnose was made by one of the best infection specialist in Belgium, she said. So, I must have aquired Reiter's syndrome, although -according to them-, there is no infection to see in the general blood test.

According to that I have some questions, and I hope that you're able to answer these, with your great experience:

- is RS for life ?

- since they didn't find an infection in my blood, does it mean I'm not infectious to my wife ? I ask this because we very much have a child wish...

- is it possible that I aquired 'something' that is asleep in my body, and this might then be the reason that my bloodresults seems to be quiet ?

- what tests still can be performed to rule out a infectious pathogen in my body ? Is this possible ? Maybe with an immunologist ?

- Is there a known pathogen(besides the ones mentioned on the Net) that causes RS after unprotected oral sex ?

Thank you for you valueable time,
Overstressed.

[overstressed]

Many thanks for your kind support. I'll let you know the outcome of the complete story. I was today seeing the psych and he prescribed me anti-depressiva(suppralexa), already, for 2 months, 1mg/day.

He also said that my symptoms could be due to psych stress.

Let's wait and see...

Overstressed.

[auntiejessi]

I think that's a good idea, except you've already had a second opinion.  

Good luck though - I'm sure its frustrating.

Aj

[overstressed]

Well, I have doxy for 20 days(1/day)(prescribed from another infection specialist) and the professor prescribed me Sulfasalazine (Salazopyrine), for 3 to 6 months.

I'm a little suspicious about Sala, because it's not just an aspirine you take and I don't if it will heal my illness or just supress it for a while.

I think I will try to have a second opinion.

Thanks,
Overstressed.

[auntiejessi]

Well, what about taking doxy and the nsaid?  Why not kill two birds with one stone?

Aj

[overstressed]

Sorry, I also forgot to mention that I will be seeing a neuro-psych, next week. Beside my psychical health, my psych needs to be helped too. I was- and still I am- in hell. I learned many many lessons the past year. Most difficult to deal with is that I have done this to myself, completely on my own.

For other people reading this too: think twice before ever putting your health(and your partner's health) at risk. All the stress, even if you don't have any complaints, your brain will create some, because of the stress. And in the end, it's not worth it, not at all. I think we should go back to the basics, enjoy life and the simple things in life. And think: regret comes always too late...

Thanks,
Overstressed(philosophical).

[overstressed]

Hi Aj,

thanks for your reply. Exactly that is what my housedoc was saying: we're walking in circles and focussing on the same. But, to me, it is simple. I had no complaints, and to my humble opinion, i was, a social, happy, healthy, positive person. After the incident, now one year later, I'm not the same person anymore. Of course I'm depressed, because of no diagnose and still having complaints.

Two weeks ago I went to the hospital for having me hospitalised. I was at the ER where they took a lot of blood from me, and I had spoken to the professor internist. That was before my bloodtest, he told me that he was thinking of Reiter's syndrom. this because of my neuropathic pain, eye infection and glossitis. A two week doxycycline will cure this.

After a week, I had to come back, and they had my blood results. What they tested, everything was normal. My urine did not show any Chlamydia infection. I was tested elswhere on this too, also negative. So, the past year I don't think I suffered from it. But he sticks to his diagnose: Reiter's syndrome. Only he changed the therapy, no anti-biotics, but a NSAID-drug, mostly because of the inflammation under my r-heel of my feet and my eye infection. I have to take this for 3 to 6 months. According to the professor, some micro-organism in my intestines cause a over-reaction of my immune system, causing my complaints. After this cure, there is no need to follow-up. He was very sure of statings. To me, it's pretty drastic, and I don't know whether I have to take this drug for the rest of my life, if the disease flares up. I really don't know. The past year, I have never taken doxycycline, maybe I should try, before taking the NSAID drug ?

To answer your question on herpes: yes, it was a PCR-test. The infection specialist mentioned this exclusivly on the paper for the lab. I had to carry it to the lab myself. So, I guess they performed a PCR test.

FYI, I live in Belgium.

Many thanks,
Overstressed.

[auntiejessi]

I don't know enough about HTLV to say anything on that.  Its very rare here, and I don't know one person with it.

Did you get a PCR blood test for herpes?  From my understanding, there isn't one available.  

Herpes won't cause most of your symptoms you have, so I wouldn't focus on that.  I also don't know that I would keep focusing on an std.  I know you feel awful, but I don't think its an std, and if you keep focusing on that, you might be missing something else.

Aj

[overstressed]

No, I was not tested for EBV. I did not request for it, nor the infection specialist thought that it might be causing my complaints. He was more thinking of a herpes infection, due to the nerve pains I have, and the glossitis on my tongue. Also, according to him, herpes can give a general symptom of salive infections, also from the eye

Until now, I was tested for HIV, Hepatitis ABC, syphilis, Chlamydia, Gonnorhea, Herpes and HTLV 1/2.

All were tested on anti-bodies, except the Herpes test, this was a PCR-test. My question now is: are any of these tests conclusive ? At the center a specialist said that not any test is conclusive, because tests are also carried out by human beings and they can make errors. But, when testing repeatedly, your test becomes conclusive. Because of my neuropatic pains and weak legs, and the association of HTLV with these disorders, I should get another HTLV-test ? Is it wise to have this HTLV carried out with on PCR ?

Also, I once tested with PCR for herpes, negative, but this was after 9 months. Is this then conclusive ?

Thanks,
Overstressed.

[auntiejessi]

I'm sorry - what you have it not an std.  So have you tested for EBV?  That's what the guy is talking about in that thread.

Aj

[overstressed]

Hi Aj,

If you have time, you may want to read this post, that I found by accident on a forum. This guy suffers with the same symptoms:

http://askwaltstollmd.com/archives/ebv/109793.html#110218

I'm so desperate, because my crusade of the last year did not give me a diagnose. Most docs don't even listen to me, they say, you've been tested and it's neg. They easily forget about my complaints. Nobody is willing to have me examined, completely, to look where my complains come frome. Too easily they say to seek for psych help, which I also did. I do not underestimate the anxiety of the last year. I'm definately not the person anymore, I used to be. And what frightens me the most, is that there will never be a diagnose and I have to suffer the rest of my life, thinking I'm carrying a disease with me and probably will die of it. It means also I cannot start a little family with my wife, because I can not put her at any risk(because I might carrying something with me).

HELP!

Overstressed.

[auntiejessi]

I don't think you got a new std.  If you did, others would have these same symptoms, and we don't get a lot of posts with these symptoms.

Aj

[overstressed]

Hi Aj,

what do you think of my hypothesis ' I might have aquired a new STD' ? I also had asked this question to the infection-specialist, and he prompted: based on the medical facts, your tested negative on STD's. Of course, maybe within 20 years, we might -unfortunately- say, that your symptoms were caused by this or another disease. We don't know...

I have also an imflammation under my r-feet. It gets worse every day and does not have the intention of healing. I used cremes, but nothing seemes to help.

I'm near to collapse...

Thank you so much,
Overstressed.

[auntiejessi]

I am not recognizing any of these symptoms.  Maybe you have allergies.  Has anyone done that testing?

We can't make a sticky of these threads, but if someone is searching our site, and puts in similar symptoms, this thread will come up in the results.

Aj

[overstressed]

Dear Auntiejessi,

I have some more news, I went to a University hospital and asked an internist for help. After investigation and bloodtest, nothing really came out. The professor first thought of Reiter's syndrome(caused by Chlamydia), but the test showed no infection of Chlamydia. Though, he sticks to his diagnose, because of my eyes problems(infection) and tongue(glossitis). He prescribed me an immuno-suppressiva, because he thinks of an auto-immune reaction of my body. I have discussed this with my house-doc and the conclusion is that I'll wait before starting with this. I will seek a second opinion.

Now, the question I have is: is it possible to create a post(sticky) where people can react upon , if they recognise my symptoms ? I am suffering a whole year with this, actually the real complaints started 6 months after contact and got worse. Although I tested negative on general STD's, we don't come to a conclusive diagnose. Nobody guarantees me that I'm not infected.

I'm so afraid and anxious that I required something complete NEW. My wife and I have a child wish, but I'm so afraid to pass a disease to her and the baby.

I'm desperate!

Is anyone recognising these symptoms: neuropathic pain in the legs, glossitis tongue, eye burn + recurring infections, chronic sinusitis, sore throat, nightsweats.


Thanks to all who take time and try to help,
Overstressed.

[auntiejessi]

Then it must be a past infection.

I wish I could help more, but all your std tests are negative, and that's my area of knowledge.  Maybe post in family medicine or men's health for more info.

Aj

[overstressed]

Dear AJ,

I did not see the results myself, he just said that I was immune to CMV. There were anti-bodies against CMV.

But, if it's an active infection of healed one, I really don't know. I guess, if they say I'm immune, the infection is over, or ... ?

Thanxs for your time,
Overstressed.

p.s. Next week, the incident is 1 one year 'old'.

[auntiejessi]

No, you would have an HIV positive test if you had AIDS.

Are they sure you don't have an current or active CMV infection?

Aj

[overstressed]

Hi Mr.Blue,

I went do a special STD center and they performed the regular test, e.g., anti-body tests, except one, herpes test, this was performed on the virus itself. Also HTLV is testen, and everything is negative. Except for CMV, I was never infected before for HIV, Hepatitis, a.o.

End of story one would say, but may complaints get worse. I have muscle pain and a eye infection, which does not heal. Also, I have glossitis on my tongue for one year already, that does not heal, with medicine.

So, my worries increase by day, and now I'm asking myself if I aquired AIDS, because the incident that I described before, was not the only oral incident with a prostitute.

Can I be in the AIDS-stage, and HIV-negative ? I've read some articles that the HIV-test give negative results in the AIDS-stage.

Please help, someone ? I did not suggest this to the internist, because I did not came across my mind, but suddenly...it popped up that I might have AIDS...

Thank you all for your support,
Overstressed.