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Should I still be concerned about HIV?

Nov 20, 2013 - 41 comments
Tags:

HIV

,

tongue

,

white coated tongue



Despite my normal CD4 and CD8 counts and several negative Elisa, I am still concerned about HIV.

Reason of my concern are the VERY bizarre tongue problems I have for almost 17 months now. I am not only talking about the white coated tongue (which covers ALL the surface of the tongue). I am also talking about the irritated tastebuds and tongue soreness I have. Not to mention the foamy saliva ans swollen tongue.

I NEVER had any health concern before in my life before this incident. The amount of doctors I have visited in the last 2 years is larger than those I have seen during all my life. And so far, none of them is able to help with my problems.

I have spoke to two HIV specialists (from different countries), both are the head of their respective NRCs (NRC = National Reference Centrum for HIV). This is what they told me based on my symptoms and testing history:

Specialist 1:

Dear Mr XXXX

from what you tell me it seems unlikely that you have received an HIV -infection at this past event.

HIV-antibody -tests become usually positive up to 6 weeks after infection and remain positive thereafter. To confirm the data finally you can ev let make an  HIV-PCR assay, direct virus detection, highly sensitive. If also this is negative (what is likely) I would exclude that you had been infected with HIV in this past event described.
Considering the tongue problems, you could eventually contact the dermatology in the XXX.

Specialist 2:

Dear XXXXX,

I am not sure whether RT-PCR  solve our problem. In the case you do not have HIV-antibodies  1.5 year after the sexual contact it is really a very little chance that you were infected by HIV. It could happen Just in the case you suffer from an other very deep immunodeficiency... Additionally the clinical symptoms you have appear mostly in the stage of AIDS and not at the beginning of HIV infection.

So I would like to propose you to visit  the infectology clinic and show there the  doctor  all your laboratory results and papers. In the case doctor will give you a written recommendation that HIV RT-PCR is an indicaded test for you  we will do it. I wish you good luck, nice regards,

What do you guys think?

Comments
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Avatar universal
by dylan85, Nov 20, 2013
Hey i dont think you need to worry about HIV anymore i talked to my HIV specialist and she said in fifteen years of her testing people for HIV every day she has only seen 1 person test positive after a 3 month negative test and she said that this person was continuing to have sex with an HIV positive partner through out the whole testing period,he tested pos at the 6 month test, so was posible he caught it after his 3 month test.

Avatar universal
by ashler1977, Nov 21, 2013
Seronegative infection cases is the thing that worries me. For instance:

http://www.thebody.com/Forums/AIDS/Labs/Q232912.html

Avatar universal
by learning550, Nov 23, 2013
so do we all have seronegative infection cases? Just imagine how many of us are facing similar problem and all of us have been through all tests and came negative. How is it possible we all happen to be seronegative.

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by nursegirl6572, Nov 23, 2013
Read this thread from the expert forum.  There are many more like it.

http://www.medhelp.org/posts/HIV---Prevention/Seronegative-Hiv-infection/show/1497993

Read and re-read this quote from the doctor, paying close mind to the 3rd sentence.:


You need to believe your HIV test results. The issue of exposure is irrelevant in the face of your negative tests.  The idea that the virus coul be causing your problems without being detectable with blood tests, including PCR is just not plausible.  I am not denying that you are having difficulties but they are not due to HIV.   My advice is to persevere with a doctor that you trust - sometimes these things take trial an error to sort out.  EWH




HIV is one of the easiest conditions to diagnose, testing is extremely reliable.  If you have tested negative and continue to test negative, you do not have HIV.  You've had MULTIPLE comprehensive assessments that would have yielded an HIV diagnosis had you been infected.  I urge you to try to put the idea of HIV to bed and get off that merry-go-round.   Whatever is going on, it's not related to HIV.  

Avatar universal
by ashler1977, Nov 23, 2013
@learning550

I didn't say we all are in this case.

I am saying that in my case, I plan to follow specialist #1 advice (but I plan to test for HTLV at the same time).


Avatar universal
by ashler1977, Nov 23, 2013
@nursegirl6572

thanks for the link. (I, however, didn't have a PCR RNA test like this person had).

480448 tn?1426952138
by nursegirl6572, Nov 23, 2013
(I, however, didn't have a PCR RNA test like this person had).


It doesn't matter, that wasn't the point of his post.  You've had enough testing to know definitively that you don't have HIV.

Avatar universal
by learning550, Nov 23, 2013
@nursegirl...do you have any experience related to  "bacilli gram negative anaerobic"..If so can you tell more about it.  I think this is related to causing white tongue.

Avatar universal
by rita694, Dec 11, 2013
I have been having the exact same issues for about a month now, mine began with painful burning on the tip of the tongue, followed by inflamed tastebuds, lots of saliva, and a white tongue. Recently had a new sexual partner( about two months go) Have you found any answers?

Avatar universal
by ashler1977, Dec 12, 2013
have been to several doctors and they have a different diagnosis everytime.

when this tongue problems appeared to you? and what do you think is the reason?

do you smoke?

Avatar universal
by rita694, Dec 12, 2013
i do not smoke, and it appeared about a month ago and still persists. I did have a canker sore at the same time of the first flare up  so i dont know if that has anything to do with it. I honestly have no clue what the reason might be- possibly related to the sexual encounter but it does not seem to have any characteristics of any stds i have researched.

Avatar universal
by ashler1977, Dec 12, 2013
how long time before the symptoms appeared did you have the sexual encounter?

what kind of sexual encounter did you have?

what tests have you done so far?

any chance to post pics of your tongue?

Avatar universal
by rita694, Dec 12, 2013
-around a month and a half later
-everything- we were exclusive and he said he has not had any kind of symptoms
-i have not had any tests done because of my tongue but i am negative for chlamydia and gonorrhea from a previous test before symptoms showed
-i will see what i can do

Avatar universal
by pali78, Dec 12, 2013
canker sore and white tongue can be syphilis symptoms, but this is a rare disease, but you never know...

Avatar universal
by livn_learnn, Dec 12, 2013
Hi ashler1977!  Thank you for sharing your story, info, personal data.   I think your pictures help me confirm my suspicions of the bumps in my throat but no test or doctor is identifying it as HPV.... because, of course, we can't get it by JUST a kiss and hug!  (Wasn't even an open mouth kiss!).  From that same kiss I think I was also exposed to HSV because I have been sick for at at least 3 months now.   My arms have had the creepy crawlys since about the time the person ran up and hugged me.

I seriously think the docs are not telling me - or anyone else their std - because we could probably file charges for bodily injury and the docs are not in business to show up to court.

I can't tell you how many medical people in my healthcare network pushed me to get testing at the public health clinic.   I still may go that route because I want an antiviral or something to help my immune system.   I'm catching every cold/flu I seem to come near to.   (Could be sick person or sick building!)

I at least have a doctor telling me the stats for MS in women, with a connection to EBV, and started the recommendation of looking at autoimmune disorders.   When I described my vulnerable system to people in the past, I had at least 3 people tell me that it sounds like I have a compromised immune system.   I never knew what this meant!!  I'm not a medical person!

Hope I'm making sense, my brain and emotions feel so scrambled since this flu like virus has started.

Anyways, I'm now on my search of discerning autoimmune disease vs autoimmune disorder vs immune deficiency.   I think you may want to research more than HIV, and you may change what diagnosis you are looking for.

Again, THANKS for sharing!

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by NunyaBizzness, Dec 12, 2013
What other tests have you had done besides the HIV/AIDS tests?

6626748 tn?1388424688
by NunyaBizzness, Dec 12, 2013
I'm sorry about my previous post. I just now saw that you asked this question well over 2 weeks ago! I'm sure your question has been answered by now.  LOL.

Avatar universal
by livn_learnn, Dec 12, 2013
Hi again ashler1977,
I have another thought for you... if HPV16 can cause throat cancer... I wonder if it can cause other cancers - other than cervical.  http://www.mountsinai.org/patient-care/service-areas/ent/areas-of-care/head-and-neck-cancer/oral-cancer/hpv/hpv-faq

Do you have taste changes or other lumps in or out of your throat/neck area?

Avatar universal
by ashler1977, Dec 13, 2013
no lumps, no taste changes.my symptoms are localised to my tongue:

- thin white coated tongue that can not be scraped off
- soreness of the tongue, specially at the border (there's where the irritated tastebuds are)
- swollen tongue
- foamy saliva.

Have all these symptoms for about 18 months now.

Went to infectologists, dermatologists, ENT, dentists, oral pathologists... they come with a different diagnosis everytime.

Recently went to an endocronologist and i am going for a series of tests next week he asked me to do.

All these problems came about 4 months after a sexual exposure (unprotected insertive oral sex with a female - i am a male). I thought I was infected with HIV due the scary symptoms I had 2 weeks after this incident: a swollen cervical lymph node in my neck, neck stifness followed by a very painful urinary track infection.

However, I have been tested negative for HIV 5 times in about a 22 months period time post incident (6 HIV 1/2 4th Generation Elisa and 1 HIV-1 PCR RNA -direct virus detection). My CD4/CD8 counts were also within the normal range.

Avatar universal
by ashler1977, Dec 13, 2013
*correction: I have been tested for HIV 7 times, 6 times with Elisa 4th Generation and 1 time with PCR RNA (direct virus detection)

Avatar universal
by maatson, Dec 13, 2013
Fungiform papillary glossitis.No HIV concern.

Avatar universal
by ashler1977, Dec 13, 2013
@maatson

thanks for your answer. how can this be treated? been to 3 dermatologists so far and they have not a clue. thanks.

Avatar universal
by maatson, Dec 13, 2013
Would look out for a external allergen. A local protein causing an inflammatory response.Best to get a Patch test panel to identify the offending allergen.
Cheers!

Avatar universal
by ashler1977, Dec 13, 2013
it's possible that this appears out of the blue and be persistent for as long as 18 months in a previously health man in his mid 30's?

Avatar universal
by maatson, Dec 13, 2013
Balsam of Peru, which can be found in toothpastes,food,etc is a known contact allergen.I would also look out for Soy protein, whey proteins and food additives as potential allergens.Time for you to look at your condition from a different perspective, the way of optimism. ok?


Avatar universal
by maatson, Dec 13, 2013
Contact allergies characteristically arise out of the blue precisely as you have described it in your history.Yes, Sir.

Avatar universal
by ashler1977, Dec 13, 2013
I did a search "Transient lingual papillitis" and found this:

"Usually no treatment is required for the classic form of transient lingual papillitis as the condition resolves within hours or days"

My problem is 18 months old now.

We will see.

Avatar universal
by maatson, Dec 13, 2013
While I agree with you that many cases resolve in a couple of days in atopic individuals persistence occurs till the offending allergen is removed.

Avatar universal
by maatson, Dec 13, 2013
Atopic people are more likely than the normal community to have inflammation of the fungiform papillae of their tongue which correlates with a history of a sensitive tongue manifest as irritation by heat and certain foods. These data suggest that atopic disease may occur in the mouth as a common inflammatory change on the tongue-fungiform papillary glossitis.
Fungiform papillary glossitis: atopic disease in the mouth?
Marks R, Scarff CE, Yap LM, Verlinden V, Jolley D, Campbell J.
Source
Department of Medicine (Dermatology), University of Melbourne, St Vincent's Hospital Melbourne, and Skin and Cancer Foundation of Victoria, Victoria 3053, Australia. rebecca.***@****
Abstract.

Avatar universal
by maatson, Dec 13, 2013
Atopy indicates an allergic tendency, generally inherited.

Avatar universal
by maatson, Dec 13, 2013
Hi Maatson, you were a great help a year and a half ago when I fell ill.I wanted to say that I've found a drastic reduction in my geographic tongue / oral purpura since quitting soy milk. I had been drinking between a half a litre to a litre of soy milk per day, sometimes up to two litres. Since quitting and taking zinc, I feel much better. I know you'll have a career in dermatology so I hope my story helps you help others! Take care, and thanks again for your help and compassion(A similar condition, and hope you do well to, soon)

Avatar universal
by maatson, Dec 13, 2013
Posting this just to show there are quite a few over there with contact sensitivity running to years.Cheers!

Avatar universal
by livn_learnn, Dec 14, 2013
This website shows a home-made gargle you could try.

http://www.dailymail.co.uk/health/article-37340/How-colour-tongue-reveals-health.html

I get sores on different places on my tongue when I overdo foods like sugar, or salt.  The sores resolve when I back off the offending food, generally a day or two later.  And I seem to get foamy saliva when I'm dehydrated.

Have you checked side effects of any meds you may be on?  

My throat bumps match yours and the hpv swab test was negative.  I've definitely had my frustrations with the medical field.  
I also get strange allergies that others don't get, like that rollee thick glue on mailers/samplers, and various scented type bath products.

Avatar universal
by ashler1977, Feb 14, 2014
Being to some doctors and the problem I have is that my tongue is very dry.

This problem started (out of the blue) in June 2012, so about 20 months now.

The dry tongue is the reason for my white tongue.

I am trying Biotene to relief symptoms but that's not going to cure the main problem... which I don't know what is.

Going with an urologist on Monday to check bladder/kidneys.

For reminder: exposure was in February 2012 and tongue problems started in June 2012. Have had several HIV tests including PCR RNA, CD4 counts and HIV 1/2 duo tests -- all negative.

For your information I don't take drugs, don't smoke, was not in chemotherapy, don't take medicines... so to summarize, I don't have any reason to have this problem.  

Avatar universal
by livn_learnn, Mar 05, 2014
Hi ashler, I lost the blog we connected on.  In trying to find this one, I noticed you may be looking for help on other sites too.  If so, good idea!  

Glad to find you again.  At least a few of us none selfish people try to keep from spreading our illnesses.  Unfortunately I ran across one of the evil ill people who want to share their misery with others.  I knew this person had peculiar behavior but didn't realize how evil.  Even when the conversation was STDs the person played dumb.   (Like he said 'you mean studs?'). He KNOWS what he had because he hung himself around my neck when we hugged and kissed goodnight.  I believe he is charming his way around women so he can continue to spread it.  I can only guess he had a terrible divorce, probably brought on by his manipulative sneaky behavior.

I still get recurrent pinkeye which I think may be HSV but the doc said rosacea, then blepheritis, and last time allergies.  I feel like I'm losing my vision with each bout of pinkeye.  Sure wish I could rewind life!  LOL. I'm sure I'm at least 75% of the population on that thought.  I remember thinking how blue the eyes were of the fella that made me sick.... knowing what I now know, I think he was hiding contagious form of uveitis with colored contacts.

Anyways I hope you are finding good help.  I still look for clinical studies for oral HPV in my area but most are for existing cancer patients or cervical HPV.   Since looking at HSV websites I've determined the tongue sores are mostly triggered by new allergies to caffeine, chocolate, and nuts like Walnuts, peanuts, etc, even maybe pumpkin and sunflower seeds! Ugh!  Lots of my favorite foods.  Zinc and vitamin D3 seems to help.

My skin is starting to look like psoriasis.  If people knew these virus attacks/communicable stuff aged and killed us, I would think there would be more research dollars given to it.  

Avatar universal
by ashler1977, Apr 03, 2014
Went to a dermatologist today as problems persist (for 2 years soon). Guess what? We ordered an HIV test (despite seeing my negative results from a few months ago) after seeing my tongue.

He also ordered another bunch of tests and took also an oral swab.

As usual,will keep updating.



Avatar universal
by ashler1977, Apr 03, 2014
there is a typo. I wanted to say HE ordered an HIV test.

Avatar universal
by livn_learnn, Apr 08, 2014
Good Luck Ashler!  I'm really thinking with the help of others on the forums, we can probably diagnose ourselves.  We just can't order our own tests.  Unless there is some reliable online place we can order from.  I definitely think my eye doctor and ObGyn know more than what they are revealing.  Just asking my eye doctor if iris damage could be virus and him saying no it could be injury - made me loose trust in doctors.  I'm going for medical information, not just symptom monitoring!

Avatar universal
by livn_learnn, Apr 13, 2014
Hi Ashler,  I was thinking about you when I was reading this alternative site https://minnesotaherbalist.wordpress.com/2013/09/11/introduction-to-tongue-assessment-for-the-western-herbalist/

Avatar universal
by livn_learnn, Apr 17, 2014
I can't believe the person at planned parenthood asked me why I would want to know if I have HPV in my throat ( like what's the big deal, everyone has been exposed to warts) !!    Well this is why... http://hpvthroatcancer.wordpress.com.

Wouldn't it be best to catch and treat before it takes over!?
What is wrong with the health field?!???
Not all warts are harmless!!

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by nursegirl6572, Apr 17, 2014
I'm sorry to see you still struggling after all of this time.  Hopefully you will find something out.  I think trying a naturopath to see if you can treat your symptoms is a great idea.  While I'm obviously a big supporter of Western medicine, I can appreciate the vast benefits that people can get from a natural approach.  Something to think about anyway...good luck.

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