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Avatar universal

Prolonged xerostomia

Hello, I am suffering from an unexplained xerostomia for more than two years now and it seems HCV might be one of the causes.

My anti-HCV tests are negative so far however I heard that often HCv is detected only with PCR RNA tests. Anyone can comment on this? The other common causes for xerostomia are HIV and HTLV (tested already for both).

Thanks.
9 Responses
317787 tn?1473358451
Long before I was diagnosed for HCV I had a problem with my salivary gland, it had to be removed.  Right before surgery my ALT and AST were elevated, the surgeon told me to get tested for Hepatitis after the surgery
I was tested and it came back negative.  Twelve years later I was diagnosed with HCV. When I asked the doctor why it did not show up before he said that back in the 90's the tests were not as sensitive.
I have seen false negatives and false positives.
Have you been tested more than once for Hepatitis?
I hope you can find an answer I know how miserable it can be.
Also, I have read that if you have scallops or teeth marks on the side of your tongue it can be a sign of a thyroid disorder.  I am not a doctor just another patient on here.
Good luck, Dee
Avatar universal
Thank you.

I have had several tests for Hepatitis but only antibodies tests (not PCR yet):

https://docs.google.com/spreadsheet/pub?key=0AoXYb8O_eRNhdHdKVERqWk8wOFBuOWxGb0dNOUw5LVE&gid=1

So I think this is the next thing I am going to do.
317787 tn?1473358451
Hi that is a really good spread sheet, I am not a doctor so am not positive what I am looking at.  I see that you came back negative for the HCV so that is good.
Is the EBV that you are positive for Eptein Bar?  I am guessing.
The reason I mentioned my salivary gland problem is that I was later told that some times happen in people with HCV.
You also tested positive for something else, is that HPV?
Perhaps one of those two things is causing your problem?  I would look up both of those and see what the side effects are from that.
I know it must be so frustrating.  I had problems with dry mouth when treating my HCV twice.  Also someone else on here continued with dry eyes mouth and found out she had Sojerns.
I think a Rheumatologist is needed for testing of that
I'm sorry you are going through this
Dee
Avatar universal
I was healthy as a horse until that night of Feb 2012. Therefore I think I was infected with a virus and the main reasons for xerostomia besides Sjogren are HCV, HIV and HTLV. Will continue looking for answers but I need at least a treatment for this. Because I produce few saliva I have problems to speak. I am 37.
Avatar universal
Dear Ashler1977,

I have been following your history which is very similar to mine.  I too went down the path of HIV infection (or rather fear of this) after I made a mistake with somebody who was not my spouse.  Very low risk...protected sex and unprotected oral.   Within a few days of the encounter, I noticed dramatic physical symptoms:

-bleeding gums
-itchy skin
-nausea
-digestive trouble

3 weeks after the incident, I started noticing symptoms on my tongue...white towards to back, and scaly.  

I was extremely afraid that I had contracted an STD (including HIV) and pursued a early warning test 1.5 weeks after the incident because I was scared of infecting my spouse.  I had to wait two weeks for the results and these were the longest two weeks of my life (the past year has likewise been the longest year of my life).  This was over a year ago now.  ALL of my repeated tests for HIV are negative.  ALL of my tests for standard STDs also negative.  I even had a period of time where I thought I must have HTLV.  All negative.  I did test positive for H. Pylori, treated it and retested and am now negative.  However, my tongue issues did not go away.

About 6 months ago, I started pursuing alternative hypotheses for my symptoms.  I had noticed that food rich in garlic definitely made my tongue better.  This was a clue that my issue was probably an infection, possibly bacterial but possibly yeast since garlic is also, from what I understand, an anti-yeast agent.  I had also noticed lots of burping going back to 3 weeks after the incident and I had interpreted it as candida overgrowth, which it could of been, but not because of HIV infection (this takes years to develop).   Long story short, I believe that all of my issues (and yours I suspect as well as the people out there who are convinced that their one or two exposures have caused them to contract some unidentified virus or bacteria that is HIV like) can be traced to one simple (and most likely factor):

STRESS, particularly EMOTIONAL STRESS

The white hairy tongue is linked to EMOTIONAL STRESS and I think I know why.  I self-diagnosed myself with a sinus infection about 6 months ago when my tongue issues and strength appeared to be nosediving.  Having rule out the improbable, I ruled in a sinus infection (due to the stress!).  I saw my doctor and she confirmed the sinus infection.  

Since starting treatment for the sinus infection (low sugar diet, lots of water, garlic supplements, probiotic rinses in the mouth and yogurt), I have seen my tongue symptoms gradually improve.  I have also seen a therapist who has helped me articulate my mental reaction to my mistake as adjustment disorder.  My mind has been making me sick and I suspect that this is likely to be your problem too.

Since convincing myself of the real nature of my sinus infection, my other physical symptoms like pimples (including some on my tongue!) have gone away gradually.  I am able to sleep better (without the panic) and my mind is able to once again focus on my work.  The past year has been utter hell for me and I'm glad that I was able to pull out of this depressive spiral induced by fear and guilt.

My white hairy tongue and sinus infection (which I believe is what you have) was likely induced by stress weakening my immune system.  Since white hairy tongue has been associated (wedmd) with emotional stress, I believe that you may benefit from a check of your sinuses.  A sinus infection will sap your body of moisture, which I found to be the case as I also found that my tongue and mouth were dry all the time unless I drank water.  Stress will cause dry mouth as well.

Please see a professional mental health specialist.  I think it is your only hope and I am proof that your downward spiral in health can be reversed.  You just need to convince yourself that the most likely (by far) cause of your symptoms is stress.  Think about it.  If you had been infected by a virus after one encounter, there should be many people out there with similar symptoms...people who are much more promiscuous that you are.  This virus would spread rapidly throughout the population and its association with the white hairy tongue would be clear.  Instead, white hairy tongue is associated with emotional stress and in my case a concurrent sinus infection.  My natural reaction to my incident was stress as evidenced by the nausea, sour taste at the back of my tongue (mucus from sinus drainage), and white hairy tongue within weeks of my very low level exposure.

See for yourself if you have symptoms of sinus infection or ongoing emotional stress.  My suspicion is that exercise and garlic which will help your oral infection will help your white hairy tongue.  It's a long road to recovery, but after a year of dealing with this, my tongue is almost back to normal and unswollen like it has been for months.  

Good luck.

Avatar universal
Hello, mine's is not a mental issue. Xerostomia has been confirmed both by a lip biopsy (infiltration of lymphocytes confirmed) and a gammagraphy. Details in my journal.
568322 tn?1370165440
The picture before the last, the one that says, "Tongue after waking up. December 2012" looks exactly like a yeast infection.

Show it o your doctor and see if he agrees.

Co
1 Comments
Yes, sometimes I would test positive for yeast infection due the very little saliva produced by my salivary glands. This is a consequence of the xerostomia.
568322 tn?1370165440
(See above post)
A yeast infection (thrush) would certainly go along with having leukopenia and  low CD8.

Co
Avatar universal
Hi Ashler. I have read your posts, and seen your photos. I have similar problems. Can I just ask you what happened to your tongue condition? Did your tongue change for the better after a while (your photos were taken in 2012 I think) ? Do you still have white taste buds and red dots on your tongue? How long did it take to clear up (if it did clear up)? Thanks!!!
2 Comments
it did not clear up. I am suffering of permanent xerostomia. There's not an explanation of what causes this, but I am pretty sure is an unknown virus I acquired in February 2012. Currently I have just deal with the disease as any other Sjogren's patient (despite I have not a Sjogren's syndrome diagnosis)
Hello ashler i'm suffering from symptoms like yours , how do you feel now ? and what treatment have you tried ?
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