Infectious Diseases Community
HIV like illness Group
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This patient support community is for discussions relating to Infectious Diseases,such as: MRSA, Staph, Herpes Zoster/Shingles, Varicella (chicken pox), Coxsackievirus, CMV, Foodborne/Waterborne, Meningitis, C diff and other

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HIV like illness Group

This Group is for people suffering from undiagnosed list of symptoms after having an exposure with no answers from doctors , symptoms are much the same between people suffering some have more and some got less but they all meet in at least half of the list will be mentioned . this group will give people a hope and tell them that they are not alone and when we reach a good a number of people we can push for starting a research about our medical condition and not only to keep setting and listening to anxiety stories as people other people did ,, we have a faith and tests that proves we are sick from unknown condition and that why we should never stop searching OUR LIFE OUR CHOICE.. This illness symptoms are : 1) Oral trush (thrush) on my tongue with red spots 2) Enlargement painful lymph node in armpit , nick and groin area (CT scan proved ) 3) Skin rashes on the chest and behind my ears 4) fatigue 5) muscle pain and Joints pain 6) Dry mouth, Oral ulcers 7) stomach ache 8) abdominal pain 9) chest pain 10) shortness of breathing 11) night swets on the beginning of the illness 12) CD 8 is higher than CD 4 and some times CD 4 is less than normal 13) Wight drop at the begging of illness then patient gain some weight after 3 months
group link   http://www.medhelp.org/forums/HIV-like-illness--/show/1436
31 Comments Post a Comment
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2143641_tn?1396681743
I figure that you know that HIV doesn't give any specific symptoms. AIDS instead can give just any symptom since the immune system is compromised.

therefore to say "HIV-like illness" makes no sense.

you're sick from an infection or an immunological / allergic reaction that followed it but look at it on the bright side your immune system is not deficient.

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Avatar_m_tn
This is the name that his illness is called by word wide its not like i just invent it ! its called that cause it match with some HIV symptoms and 99% of people who caught it was it after exposure so in the first they called it HIV negative virus after that the researchers proved its a new HIV strain or an old so the name has been changed to what u see now until it figured out.
and i can a sure you my illness is throw an infection you can read my post and you will figure why,, thanks for  passing
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2143641_tn?1396681743
I remember reading one of your previous posts.

did you see a specialist in Infectious Diseases? a Immunologist?

what therapies have you tried? did you try Plasmapheresis ?
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Avatar_m_tn
I saw 5 infection disease doctors with different theories and no answers 2 immuloigist that said my problem its not with them , my ANA is negative  and my IgG,IgM,IgA,IgE,IgD are all in the normal range so they close this door and for a fact i was a healthy person before that exposure and my life start to be ruined in a week after it ,, Finally brother this Plasmapheresis is only used with Autoimmune disorder people ..
thanks again for passing and your concern  
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2143641_tn?1396681743
there are some autoimmune reactions that won't show up on blood works.

Plasmapheresis is also used to treat some types of viral infections also HIV

this study for example also involved CD4 testing

http://www.ncbi.nlm.nih.gov/pubmed/9617460

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Avatar_f_tn
Hey, Omar!  Sorry, I guess I don't understand your second post??  Which researchers proved that this is another strand of HIV?  In all the research I've done, I've never heard of any new stands??  What I HAVE researched is that in no way can HIV (or alleged 'new strands' of HIV can be diagnosed through symptoms as there are many other illnesses out there with similar ARS symptoms), so I'm a bit confused as to how these researchers came to the conclusion that this is some sort of new strand???

Although my symptoms are substantially different from yours, I will subscribe to the group to get as much information as I can out of my own symptoms, along with tracking your progress because I really want to see you get better.

I will agree with GioItaly on this one that the thread title is a bit mis-leading and might limit the number of views from others.  In my opinion, a far better title would be something like "undiagnosed symptoms after sexual exposure".  But in any case, this is your thread so please call it whatever you like.

Like I mentioned, I don't believe you and I are suffering from the same thing, but I will post my symptoms here as well in the next post.  Best of luck to you in your research and overcoming this illness.
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Avatar_f_tn
Hello all.  I am a 28 year old male.  Some of you may remember me from several months back.  Well, I'm here again because my symptoms still persist, and I really need an answer as to what's going on with me.  For those who are not familiar with my story, here it is:

In early March, I received oral sex from a stranger (I also had intercourse with her, but it was protected by a condom; no breakages, slip of condom, etc).  About 3 weeks after this incident, I started to get a fungal infection in my groin/anal area, which would itch from time to time, along with oral thrush.  My genitals also turned a red/pink color.  At 5 weeks post-incident, I had all my std work done.  Everything came back negative (Heb B, HIV, HSV 1 & 2, gon, clam, syph, etc), however, the fungal infection was confirmed by a swab test.  I was prescribed a fungal cream and tablet, but they didn't seem to help.  I was also getting headaches at the front of my head daily.

At the 10 week mark, I started getting swollen lymph nodes in my groin and armpits, along with unusual excessive sweating from armpits and palms of hands, even if it wasn't hot outside.  I did not have a fever either.  I also noticed I was having a tingling and pins and needles sensation in my left hamstring down to my foot.  Every once in a while, if I'm sitting still, my muscles will twitch.  This mostly comes from my legs, but occasionally it is in my arms and chest as well.  I went back to the doctor to have another full panel STD check again, including HIV.  The only thing that changed this time is that they picked up a Hepatitis B surface antigen with a 17,000,000 viral load, which I'm told is extremely high.  The only problem is they didn't find any antibodies for it, and my liver function tests came back completely normal.  I even retook my LFT/ALT 2 weeks after that, and they were still fine.  The doctors were stumped with my unusual blood work.

So, I decided to just let things play out and hopefully kick this over time.  All last month, for about 4-5 weeks, nearly all of my symptoms really mellowed out with the exception of the swollen lymph nodes.  The headaches were gone, no noticeable redness on my scrotum, didn't itch down there (not enough to complain about anyway; I understand we all have an occasional itch there sometimes).  Oral thrush and nerve tingling in leg, if they were there, were hardly noticeable.

Then, all of a sudden, about 9 days ago, my symptoms came back!  They weren't as bad as the initial symptoms (for example, the sweating on my palms and armpits aren't quite as excessive as before).  There is a bit of redness on my scrotum, but not as bad and doesn't itch like crazy as it did before.  Oral thrush is back also, along with pins and needles in legs and twitching of muscles/nerves.  I went to another doctor to get my lymph nodes checked out; they've been tender for about 3 months now.  Doctor examined them and agreed that they were slightly swollen, but told me not to worry about it for now.  I argued that I thought there were a couple in my groin that felt 'hard', but he said he's been working with lymph nodes for 43 years and disagreed with me.  Btw, they're about the size of a pea.  There are 2 on each side in the groin area.  He couldn't even feel the ones in my armpits, which is understandable because even I have a hard time locating them.  They're just painful from time to time.  He told me to give it a few more weeks, then he could do a biopsy on them.

So, here are my list of symptoms to date:

1.  Oral thrush (btw, the thrush is just a white coating on my tongue; it's not the typical thing I've read about on the internet where it looks like lesions/califlower or bleeds when scratched off).

2.  slight redness on scrotum (genitals/anus doesn't itch near as much as it used to)

3.  pins/needles sensation in nerves down left leg, along with muscle twitching

4.  swollen lymph nodes in armpits and groin

Okay, so here are my questions:

1.  Has anyone else experienced these symptoms and found the cause of it?

2.  What could the Hep B surface antigen with 17,000,000 viral load and no antibodies mean?  Especially if my symptoms are not classic Hep B symptoms?

3.  I've read a lot about oral thrush online, and almost every link goes straight to HIV.  Well, I've been tested twice now, and I've been told by all my doctors and other online experts that I DO NOT have HIV.  I also understand that thush in HIV-infected people doesn't happen until a later stage.  I have read that oral thrush can be due to 'viruses', but that's all it says.  Not one website identifies these possible viruses.  Does anyone have any idea of what kind of virus can cause thrush besides HIV?

4.  If I have a lymph node biopsy, will this identify the problem?

This has been going on for about 5 months now if you include the start of the first couple symptoms.  I really need some answers and for this to be overwith.  Please help!  Thank you, and God bless.

Also, is there any other tests I should ask my doctor about?
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Avatar_f_tn
Also Omar, please, for your own good, don't get fixated on the assumption that this is some new strand of HIV.  You're only going to drive yourself crazy.  Although I don't know what you're suffering from, I believe it would be far more plausible to investigate and research other possible illnesses.

Look at it this way:  if this was a new, extremely fast-acting form of HIV, I believe you would be far more physically ill and infected with other things by now such as pneumonia, TB, etc....
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Avatar_m_tn
Again am sure its an infection cause every thing have a leads to it and i have mine as my exposure , my CD 8 count and other blood test i mentioned and finally my family history with no such diseases so i cant use such methods for  treating unknown something, i should have a diagnose before anything and when we talk about using this in HIV patient or other viral infections those people use another medicine as antivirals in the same time ..
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Avatar_m_tn
mr raven am sorry you are not getting what am saying .. what i sai is "THIS IS NOT A NEW HIV OR AN OLD HIV STRAIN ITS SOMETHING ELSE" please be sure of what u r saying
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Avatar_m_tn
my mistake :
(This is the name that his illness is called by word wide its not like i just invent it ! its called that cause it match with some HIV symptoms and 99% of people who caught it was it after exposure so in the first they called it HIV negative virus after that the researchers proved its NOT a new HIV strain or an old so the name has been changed to what u see now until it figured out.
and i can a sure you my illness is throw an infection you can read my post and you will figure why,, thanks for  passing)
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Avatar_m_tn
No i wont be more ill than this people with HIV doesn't feel sick this much in the binning of there illness it take years and i have  pneumonia btw :)  
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Avatar_f_tn
Please keep us posted with any new tests results and any new information with your research.  I will keep you updated as well.
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Avatar_m_tn
I will :)
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Avatar_f_tn
Hey, Omar.  As promised, I did some research for you today.  I looked into nearly all websites about the 'HIV-like illness from China'.  I will admit that the symptoms you listed are very similar to the symptoms that other sufferers are experiencing.  I still don't know how they decided to come up with a name like 'HIV-like illness' since HIV has no symptoms, barring the initial ARS symptoms which typically last 2-4 weeks.  But in any case....

I did stumble across some, what I would call, good news, about this illness on one of the websites.  It said that after a period of time (2-3 years), the sufferer is usually no longer contagious.  It goes on to further mention that these people who had a low CD4 count in the beginning stages, later returned to normal after some time.  Soooo.....unless I'm reading all of this wrong, it this is all true, it really does sound like you could come out of this completely healed (if, in fact, this is even what you have).

I am not trying to give you any sort of false hope here.  This is just what I read, and I would not make anything up just to make you feel better.  Maybe you read something about this too??  If not, do another search; I'm sure you'll find the same info I did.  Best of luck to you.

If you happen to stumble across any information regarding my condition, please let me know.  Or if you come across anyone on this board or any other board with the same symptoms as me so I can get in touch with them.  Thanks and keep us posted!
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Avatar_m_tn
you are a good man and i like you :) your sense to help is nice ..

I don't know where did u find these information about 2-3 years for the illness to resolve by it self cause i will love to read them as i never found them before after all researches i did , i wish they will be true but i need to know where i can find them ..

About your story i still see that u should visit a doctor for the Hep B story and u could run a urine viral culture u will find it in big labs it could detect some of the viruses like CMV or Adnovirus and you may try to run that could make similar groin symptoms , TB urine AFB , culture or PCR test she may got in her mouth and passed it to u , finally you should run semen culture and examination and the same for urine

Best wishes brother
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Avatar_f_tn
https://sites.google.com/site/newhivaidslikeviruschina/

I've read through it again.  Most of the information I provided, according to the website, was correct, but I may have jumped the gun on some other things.

If you read through it, it says that of the people who have low CD4 counts, MANY of them return to normal levels after several years (this, to me, says that the immune system is starting to function properly again....but I'm not a doctor, so I could be wrong).  It also says, towards the end, something along the lines of "the virus may be contagious for many years"....this, to me, tells me that it will not ALWAYS be contagious.

Sooo...from what I read, it looks somewhat optimistic.  I mean, if you're immune system starts functioning properly again, and you can find meds to rid yourself of the symptoms (if your body doesn't do it by itself over time), and you're no longer contagious, then I'd be pretty stoked about it.

Like I said, I may be reading it wrong, so please do yourself a favor and read through it also.

And I want you to think about something else also:  let's say that this is some kind of 'hiv-like illness' that is deadly.  Well, my friend, if it's as contagious as they say it is (through kissing, sweating, sharing eating utenstils, etc...), then it's only a matter of a very short amount of time before this becomes a world-wide epidemic and nearly, if not all, people will have it, so it's either going to mean the end of mankind or scientists are going to have to pull their heads out of their @$$es and find a cure VERY quickly.  Just trying to get you to look on the bright side :)

Anyways, look through the website and tell me what you think!
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Avatar_m_tn
chick this ;)

However, although patients test negative for HIV, 40% of the infected patients are found to have low CD4 cell count, as low as 200 CD4 cells per mm3 of blood (normal CD4 counts are in the range of 500 to 1500 cells). These patients also often have a raised CD8 count. The other 60% of infected patients have more-or-less normal CD4 levels. Some of the patients with low CD4 counts see their counts return to normal after a few years. Some people also experience some degree of remission from symptoms after around two years with this pathogen.

((In all cases, though, this Chinese HIV-like pathogen causes a chronic, persistent infection that does not disappear.))

Again its sexually or by saliva contact not by sweating these claims are dismissed in the beginning of the story they were because of this new disease phobia

Thanks again
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Avatar_f_tn
Sorry, Omar, I'm not sure by your commment, whether you are agreeing with me or not??  If CD4 levels return to normal, then doesn't that mean that your immune system is responding well again???

Also, what do you think about it saying that 'this disease can remain contagious for a long period of time'?  Again, that, to me, states that it will not always be contagious.

It seems by your last post that you are fixating on the part where it says that this is a chronic infection that won't go away.  Well, so are a lot of other viruses out there......take CMV or EBV or HPV for example.....it is, to my knowledge that these infections will always stay in the body, but will remain dormant as long as you have a healthy immune system, cause no further complications, and will no longer be contagious.  Is that not what this article is saying also about this specific infection??  Or am I missing something??
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Avatar_m_tn
Am not agreeing with you cause some other people still have there  CD4 normal and have all the symptoms and those viruses u mentioned should remain dormant  other wise there should be a reason they reactive and stay in this condition
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Avatar_m_tn
It might be our thing and it might not, its not the same study for HIV like illness that is going in other labs about the cases in china but this study is about cases in Taiwan that also had the unknown disease so it might be ,, What am sure about that now there is something found and they say it might be an immune deficiency and it might be caused from an infection ,, days will show us what we are waiting for
http://www.deseretnews.com/article/765598628/New-AIDS-like-disease-in-Asians-not-contagious.html
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Avatar_m_tn
Update : Lymph biopsy showed that my body is fighting an infection but still this infection is unknown  after one year :)
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Avatar_m_tn
Where did u taken ur biopsy?
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Avatar_m_tn
Went for full blood check and full general health check up
And aml went ok. With perfect limit.  I think we should just relax and symptoms willclear
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Avatar_m_tn
As i said we have different stories ,, hope the best for you
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Avatar_f_tn
UPDATE:

Went back in yesterday to get my results from the tests I took last weekend.  As you know, from the tests I took 2 weeks ago, I had a bacterial infection in my mouth and was prescribed an antibiotic.

Results:
1.  White blood cell count:  Normal (which was strange to me considering they found a bacterial infection in my mouth).
2.  Diabetes/Blood Sugar Test:  Normal (Negative)
3.  Red Blood Cell Count:  A bit on the high side and high in iron, but doctor said that this is normal considering the lifestyle I live (body-builder=much more protein/red meat than the average person).
4.  Hepatitis B Surface Antigen Test:  POSITIVE

As all of you already know, I tested positive for the HepB Surface Antigen months back as well, where they didn't find any antibodies and all liver funcion tests came back completely normal.  Since this recent test that came back positive again, I have not taken another antibody or liver function test.  Doctor recommended to set up an appointment with an immunologist instead, which I will do as soon as I get my health insurance sorted out.  Until then, I am post-poning any more tests.  So far, 3 doctors (one urologist, one specialist in hepatitis, and one GP) cannot explain my test results.  None of them have ever seen a HepB surface antigen test come back positive with no antibodies for it and normal liver function tests.

Symptoms to date:
1.  Absolutely no classic symptoms of Hepatitis (jaundice, pain in abdomen, etc.)
2.  Lymph nodes in groin still tender (2 noticeable ones)
3.  Lymph nodes under armpits, although still there, don't feel as though they are as significant as before, but still get irritated/tender from time to time.
4.  Unusual sweating under arms with the slightest bit of physical activity (even walking; and even when it's not warm outside), along with occasional sweaty palms, although rare.
5.  Still have the white tongue, which they told me was not thrush after a swab test; instead a bacterial infection.  GP told me to give it a couple weeks to improve.  If not, they would test again and, if the bacteria was still there, put me on another antibiotic.
6.  Still a slight redness on scrotum.  It has gotten quite a bit better over the last several months as well as the itching from the anus.  Surprisingly, when I was on an antibiotic this past week, they didn't get any worse.  When I first got symptoms, the docs put me on antibiotics (after I already had a fungal infection on my scrotum), and they turned VERY red and it covered my entire scrotum.  This time, there was absolutely no change to what it has looked like the past couple months (I'm taking this as a good sign that my immune system (if it was, in fact, compromised in the first place is fighting back.....and winning).

Still don't know what to make of the test results.  I still think that the HepB test is mistaking another kind of virus for HepatitisB, but I'm no professional.  Regardless, the FACTS remain:  HepB Surface Antigen positive that HAD a viral load of 17,000,000 (I say 'HAD' because I did the viral load test 3 months ago, and I have no idea what it is now).  I will wait to see an immunologist to find more out.

This is all just very strange.  But like I said, I'm staying optimistic because the symptoms DO feel like the are slowly getting better (albeit VERY slowly), and all other blood work is coming back completely normal.  Hopefully the immunologist will have some answers for me, and this infection will rid itself from my body soon.

I will keep you guys updated.  Best wishes and prayers to all who are suffering.
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Avatar_m_tn
We are still here waiting to help people like us
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Avatar_m_tn
The same situation here.
Also suffer from
1 - significant weight loss.
2 - dry skin (continuous)
3 - a white tongue. And on both sides of it white growths (continuous)
4 - redness of the eye (continuous)
5 - fatigue in the body and there is no power
- Dizziness (ongoing)
- Arms hair grows to become the longest
Of course at the beginning of severe injury I was a cold and back pain and bone. And sweating, extreme
The problem began through unprotected sex. Symptoms began two days later, and now a full year
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Avatar_m_tn
Every day I got new messages and new cases here and in other website, our number is getting bigger and together we could do something !

We are not alone ! I read some cases back from 1992 with no answers but with new technologies and better ways of communication between patients we can achieve a lot !

Ideas of what could cause our illness would be discussed in our group with ideas from patients in different countries so who see him self in the same category with us can join us in :

http://www.medhelp.org/forums/HIV-like-illness--/show/1436

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Avatar_m_tn
is this group still active?
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Avatar_m_tn
انا مهتم ياعمر بهذا الموضوع هل من الممكن الاتصال بك
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