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Salivary gland disorder confirmed

Nov 05, 2014 - 65 comments
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salivary gland

,

Salivary gland disorders

,

xerostomia



After two years of tongue problems I was finally was diagnosed two weeks ago with a salivary gland disorder through a gammagraphy (a CT scan). My salivary glands are not working properly and this is what explain why my tongue is always dry or with thick/sticky saliva (xerostomia).

Now this Friday I am having a lip biopsy to rule out Sjogren Syndrome (SS).

From what I have found, it seems I was infected with a virus (probably retrovirus) through oral sex (the cervical swollen lymph node about 10 days to 2 weeks after exposure is clearly indication of that). This virus then triggered an inmmune reaction and this inmmune reaction triggered SS (or something like) which in return is causing the salivary gland disorder. It makes perfect sense.

There's literature supporting the thesis that retroviruses might cause SS or SS like symptoms:


http://arthritis-research.com/content/13/2/212
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC499817/
http://onlinelibrary.wiley.com/doi/10.1002/art.1780370405/abstract
http://arthritis-research.com/content/13/4/233

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11083273 tn?1415152277
by luckysteph, Nov 05, 2014
OMG I always a thick which I thought was tarter buildup on my tongue. I almost bit my tongue completely off in a accident 1-1-14 and broke 3 of my teeth in half also so I thought it was from that. but now I have a huge lump by my ear, it doesn't hurt but since my brain bled in the accident I'm scared. I was told it can be a swollen gland. I am going to look up the links thank you!

Avatar universal
by ashler1977, Nov 05, 2014
@luckysteph if it's because of the swollen gland, I am not sure it's the same case. Mine's was most likely caused because of a virus, but in your case it might be a result of the accident you had. either case, good luck!

Avatar universal
by ashler1977, Nov 15, 2014
Had a lip biopsy done last week and waiting for results. Will update as soon as I can.

Avatar universal
by ashler1977, Nov 25, 2014
Just to update that I have the results of my liopsy back. Results indicate I am in the grade 2 of the criteria of Chisholm & Mason, which is not enough to confirm the SS diagnosis. This is what is written in the paper (translation to English as best as I could, I am in a non english speaking country in Europe):

xxxxx = i couldn't find translation

"Serial cuts completely treated samples. Tissue salivary glands (3x) extracted with mild chronic inflammatory celullar  without formation of lymphocitic focus (Grade 2 of the Chisholm & Mason criteria), regressive amended, xxxxx trees. xxxx slightly dilated, without atypia, without dysplastic changes, without pathological content. Serial sections without signs of malignancy. Conclusion: Based on histomorphology image we have a nonspecific chronic sialadenitis, grade 2 according Chisholm & Mason, serial sections without malignancy. We recommend adequately monitored"

Basically the oral surgeon told me there's something wrong but unfortunately the histology does not confirm what's wrong. He definitely thinks there's a systemic disease. I spoke to him about the sexual exposure I had and he thinks that yes, this could have been triggered by a bacteria or virus. He asked me if I am willing to try something so he prescribed Rovamycine, an antibiotic. He told me to try and see what happens.

After 2 years of dozens of doctors I am willing to try anything. Suggestions are welcome. If this antibiotic does not do anything I might request AZT treatment (see an article here http://www.ncbi.nlm.nih.gov/pubmed/10515640) I am really very desperate.

By the way, although the lip biopsy went well I still have numbness in the area where the biopsy was performed. I don't know normal is this, as it has been 2 weeks already. The doctor just put away the stiches last Thursday (13 days post biopsy). He said it can take up to a month until things get back to normal. We will see.

So still looking for a diagnosis.

Avatar universal
by pali78, Nov 26, 2014
@Ashler, Are you saying there are other retroviruses besides hiv and htlv? DO you not believe this could also be a enterovirus? Myself,wife, and 2 daughters are all have dry peeling hands and feet .
And doctors don´t have a clue, just look baffled and tell me it probably will resolve in time. I think my tongue looks like a geographic tongue. But is very dry as well. I will have to go to a rheumatologist soon and hopefully get som kind of diagnoses.

Avatar universal
by ashler1977, Nov 26, 2014
If your tongue is really dry don't wait a second and go to check your salivary gland functions.

http://www.hopkinssjogrens.org/disease-information/diagnosis-sjogrens-syndrome/salivary-gland-function-scan/

Avatar universal
by Sunshine965, Dec 07, 2014
Hey ashler
Iv been reading all your comments.. I hope ur doin well.

My english is a bit weak. Can you please make it clear! Is all your symptoms caused by salivary gland???


Avatar universal
by ashler1977, Dec 07, 2014
My symptoms are due salivary glands malfunction, however, I don't know what is causing this salivary glands malfunction.

Avatar universal
by Cincy513, Dec 18, 2014
But you tested positive for HPV 16 correct?

I had, what my ENT doctor called a papilloma removed from the roof of my mouth, but before doing so I saw a Oral and Maxillofacial Pathologist who said it was a normal part of my anatomy...I still wasn't sure what it was even after seeing him so I had it removed by my ENT doctor. Biopsy said it was a papilloma(wart) but wasn't tested for the strains so I asked to have it tested. It was tested for 6, 11, 16, 18 and about a dozen other strains of HPV and the test came back negative. That's been over a year ago, but my tongue in some ways looks like yours (ridged tongue) other than the dry mouth and some other issues you are having.

All of this started several months after a sexual exposer. Now, the girl I was dating at the time (we dated 5 years) never had one issue and to this day has never said anything to me.

I'm beginning to think your problem or mine  doesn't have anything to do with our sexual exposers. I've gone on with my life and don't worry about it anymore. It's just odd and wanted to share my experience.
    

Avatar universal
by Frenchies, Dec 18, 2014
I have to disagree. I think it is from a sexual exposure. I am a nurse and I have the same symptoms. My symptoms occurred after a sexual exposure. I believe some people are carriers and build immunity to the diseases they have and then give to others. The receiver experiences all of the symptoms. All we can hope is that our immune systems can be strong enough to fight and destroy whatever this is. I'm still looking for a diagnosis.

Avatar universal
by Lupefiasco22, Dec 22, 2014
Ashler,
What type of doctor made this diagnosis? I am having the same exact issues for the most part. Dry tongue, bumps inner gums, and such. Did an oral surgeon order the CT scan? Please let me know.! Feel free to send me a message

Avatar universal
by ashler1977, Dec 22, 2014
yes, an oral surgeon should order the salivary gland scan
http://www.hopkinssjogrens.org/disease-information/diagnosis-sjogrens-syndrome/salivary-gland-function-scan/

Avatar universal
by wantonjoe, Jan 19, 2015
Hi ashler,
has the xerostomia caused you to have any dental problems? eg gingivitis / gum recession?

Avatar universal
by ashler1977, Jan 20, 2015
Yes, gingivitis.

Avatar universal
by Cincy513, Jan 25, 2015
How did the antibiotic go back in November?

Avatar universal
by ashler1977, Jan 26, 2015
Antibiotic did absolutely nothing.

Avatar universal
by Cincy513, Jan 26, 2015
Since the problem is your mouth, have you kissed your gf or wife since all this? Is she having any issues? Even using condoms for sex is only about 50% protection. If it's been since 2012 and she hasn't had any problems my guess would be this ISN'T sexual related. If it was you'd think by now she would have something.

Avatar universal
by ashler1977, Jan 26, 2015
"Since the problem is your mouth"... The problem is not in my mouth. The mouth problems are just a reflection of an underlying disease. There's a salivary gland disorder. The question is WHAT is causing that salivary gland disorder.

I am using condoms to protect my wife and she is fine until now. My guess is that if I was infected with an unknown (or known?) virus through oral sex then I could pass the same to her and that's why we have been using protection until now.

I have an appointment with an infectologist this week (she is also an HIV specialist) so it will be pretty interesting to know what she has to say to this.

Avatar universal
by Cincy513, Jan 26, 2015
Please keep us updated.

Avatar universal
by Cincy513, Jan 26, 2015
Have you been tested for Epstein-Barr virus (EBV), cytomegalovirus (CMV), or Coxsackievirus? Those cause salivary gland disorders.

Avatar universal
by ashler1977, Jan 26, 2015
All my tests are here:

http://goo.gl/a2h7qV

Avatar universal
by Cincy513, Jan 26, 2015
So by looking at your test results wouldn't it be wise to think that EBV is causing the salivary gland disorder?  

Avatar universal
by ashler1977, Jan 26, 2015
EBV is prevalent in over 90% of the human population:

http://www.ncbi.nlm.nih.gov/pubmed/24053733

The link between EBV and xerostomia is not well stablished and it seems rare (it EBV would be a common cause LOT of people would have this problem). We will see what infectologist has to say about this.



Avatar universal
by Cincy513, Jan 26, 2015
Since being EBV positive have you had any swollen lymph nodes in the neck or swollen tonsil(s)?

Avatar universal
by Cincy513, Jan 26, 2015
If a infectologist or immunologist can't find the cause see if you can find a functional medicine physician. Look up that physician and see if they can't help with finding the underlying cause.

Avatar universal
by ashler1977, Jan 27, 2015
"Since being EBV positive have you had any swollen lymph nodes in the neck or swollen tonsil(s)?"

just 2 weeks the exposure, a swollen cervical lymph node in the neck.

Avatar universal
by ashler1977, Jan 27, 2015
the swollen lymph node was in this area, very similar to this.

http://www.cancerjournal.net/articles/2010/6/3/images/JCanResTher_2010_6_3_370_73364_u2.jpg

Avatar universal
by ashler1977, Jan 27, 2015
more similar to this picture actually (first photo, lymph node in the neck):

http://www.open.edu/openlearnworks/mod/oucontent/view.php?id=106&printable=1

Avatar universal
by Cincy513, Jan 27, 2015
Thank for the reply!


I'm pretty sure my mouth issues come from the HBP meds I have taken the last 10 years, in which the meds make your glands produce less saliva which leads to my dry mouth. It even worse when I am stressing.


Keep us posted!

Avatar universal
by ashler1977, Jan 27, 2015
that's what I told you already.

Avatar universal
by Cincy513, Jan 27, 2015
You are right, you did tell me that already, but after seeing your post and journals it made me wonder.

Avatar universal
by ashler1977, Jan 27, 2015
we have a similar problem, but certainly not  a similar cause. you were in medications for 10 years. i was healthy as a horse and problems occurred months after exposure. i don't think that's a coincidence.

Avatar universal
by Cincy513, Jan 28, 2015
I'm still on the medication and have been seen by many doctors (ent, and oral pathologist) who have ran tests and every time things have came back normal.  I even have done 4-5 HIV test over a year and a half roughly that have came back normal every time. I need to stop worrying and go on with my life as I am only 28. Maybe you should do the same? Take the chance of having babies and see if she gets any of the issues you have, and even if she does, so what? It's your life time partner. If she seriously thought this was a problem she would have left you, or not even having sex with you still.  If she doesn't then you know it's not a virus, or anything that's contagious. Maybe you are over thinking things and need to settle your nerves.

I know one thing is for certain is my tongue isn't white like yours in the morning. My tastes buds are red but not inflamed either. Oral pathologist confirmed they were normal. Only thing I might have is dry mouth caused by the meds I take for HBP.

Stress makes my dry mouth worse, that's one thing I have noticed.


Good luck and keep us posted. I'll be checking in from time to time.



Avatar universal
by ashler1977, Jan 29, 2015
Well, I am in a support forum for people with Sjogren syndrome because they have sicca symptoms as well and I am seeing a reumathologist in two weeks to ask for treatment.

In parallel, I am thinking on running a PCR RNA HCV test to absolutely rule out Hepatitis C (this virus is known to cause xerostomia) and I am waiting for the HIV results of the girl I was with in February 2012. To my surprise, after nearly  three years I contacted her and told her about my problems and she accepted going for a test (she refused to do it back in 2012).  Unfortunately she didn't do it yesterday as she promised and says she will do it next week. In case she tests positive for HIV, I am going to retest.

Avatar universal
by Cincy513, Jan 29, 2015
If you are so worried about HIV why don't you retest yourself? Don't wait for her.  I'd say after three years of testing with negative results wouldn't you think you are negative?

Same with hepatitis C. Other problems would have came about by now if you have it. I did a little research and I couldn't find any websites that suggest Hep C causes xerostomia.

Hepatitis C is spread only through exposure to an infected person’s blood. It is not contagious like the common cold. You cannot get, or give, Hepatitis C by:
Kissing
Hugging
Holding hands
Casual contact
Sneezing
Coughing
Sharing eating utensils
Sharing food or drink
Breastfeeding (unless nipples are cracked and bleeding)


So if you weren't exposed to her blood how would you get hep C from her?


But if you are that worried still have the test done again and don't wait on her.




Avatar universal
by Cincy513, Jan 29, 2015
Also, You can also get infected by having sex with someone who has the virus. If you have chronic hepatitis C, your symptoms may include:
•Fatigue
•Upset stomach
•Drop in appetite
•Joint and muscle pain

You may also have symptoms related to liver cirrhosis, such as:
•Jaundice (yellowing of the skin and eyes)
•Dark yellow urine
•Bleeding or bruising easily


Again, I show nothing that suggest hep c causes dry mouth.

Avatar universal
by ashler1977, Jan 29, 2015
You didn't search well:

Just a few articles linking HCV an Xerostomia:

http://www.ncbi.nlm.nih.gov/pubmed/20924089
http://www.hepatitiscentral.com/news/10_helpful_tips/
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4160670/

I am not testing about hiv unless she has hiv. I already did lots of hiv tests and only a positive result from her would make test again for it.

thanks for your concern.

Avatar universal
by ashler1977, Jan 29, 2015
"Xerostomia has been found among 5-55% of HCV-infected patients"

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4160670/#ref36
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4160670/#ref38
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4160670/#ref39
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4160670/#ref41
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4160670/#ref42

Avatar universal
by Cincy513, Jan 29, 2015
proved me wrong I guess :)


best luck to you, sir. please keep us updated!

Avatar universal
by Sunshine965, Feb 24, 2015
Hi ashler, how you feeling?
Any updates?

Avatar universal
by Sunshine965, Feb 24, 2015
Does your tongue looks exactly the same way it looked before 2 years??? And whats causing the teeth marks!

And did they treat you for your salivary gland disorder?

Avatar universal
by ashler1977, Feb 24, 2015
tongue is looking drier than before, because I have less and less saliva. I will go tomorrow with a doctor and will ask to start treatment as if I had Sjogrens.

Avatar universal
by Sunshine965, Feb 24, 2015
My tongue looks worse than before, and it burns so bad when i clean it.
Im also experiencing mild sore throat for over 4 months.
I know i cought something from a sexual exposure, the guy i was with seems ignorant. And when i asked him to get tested for hiv he called me insane. Which made me feels worse.
My tongue looks exactly like yours the irritated taste buds and the thin white coating bs i have more teeth marks.
Do you and your wife have a normal sex life? I mean is it easy for both of you to use condoms everytime. Thats what im worried about to be contagious. I hope it will clear up naturally with time.

Please keep us updated.

Avatar universal
by De_khan1, Feb 24, 2015
Hi Ashler! It seems we are travelling in the same boat. I have had similar symptoms you have been trying so hard to diagnose. have conducted so many hiv 4th generation test for almost more than two years now but all negative. My doctor has strictly advised me not to go for more hiv tests. My symptoms on tongue were not noticeable earlier but it got worse when I started smoking again. After quitting smoking my itching and burning sensation on tongue subsided.  But oral thrush appeared only recently on the later part of the tongue. I have had a course of antifungal medicine that has reduced the swollen taste buds and white coating but excess salivation is another problem. I have gone through many blogs that simply rule Out hiv after three and six months depends on the risk of exposure.

http://www.thebody.com/Forums/AIDS/SafeSex/Q191393.html

http://www.thebody.com/Forums/AIDS/SafeSex/Q206433.html



Avatar universal
by Sunshine965, Feb 25, 2015
Hi De_khan1 as your profile shows ur a female? Please correct me if im wrong.
What was your exposure?
Have you experienced mild sore throat?
My symptoms are very mild and not bothering me only my tongue which looks worse than before.
Recently im experiencing dry throat while in bed.(at for months after exposure)

If you have a partner do you have unprotected sex? Does he/she have your symptoms?
Please any answer is appreciated.

Avatar universal
by Frenchies, Feb 26, 2015
Does anyone have any problems with teeth or gums?

Avatar universal
by De_khan1, Feb 27, 2015
Hi! @sunshine This is male. I've also noticed female written on profile but I can't seem to rectify it. Anyhow, I have had sexual exposure but my condom broke off during action and I realized it when i pulled it out. I have done many fourth generation hiv tests All non-reactive. My doctor hasent advised me to go for his pcr coz it is only taken for early detection of virus or when the antibody testest comes out positive. My tongue has teeth marks on sides and enlarged taste budds on the lateral part of the tongue And thrush. Meanwhile, I am using yogurt and edible coconut oil to subside thrush. ai have also searched that oregano oil is very effective. But should used in diluted form. They work fine but looking for a cure or diagnosis. I searched the net for similar symptoms that relates to my symptoms. Let me know if you find it similar to yours. Go through condition in the following link;  MEDIAN RHOMBOID GLOSSITIS.

http://www.aafp.org/afp/2010/0301/p627.html



317787 tn?1473362051
by Dee1956, Apr 03, 2015
Hi if this was mentioned excuse me.

Have you been tested for Hepatitis C?  I did not see it listed under your tests.  Sorry if I missed it.
Dee

317787 tn?1473362051
by Dee1956, Apr 03, 2015
I found this post, thought it might help someone

http://www.medhelp.org/posts/Hepatitis-C/Do-you-have-TMJ-and-Salivary-Gland-problems/show/95898

Avatar universal
by mr_worriednow, Apr 12, 2015
Hi Ashler77,

First of all thank you for posting your story online, your accounts are very informative and are based upon clear scientific results and/or literature...you have become a real online pioneer in the quest for answers regarding this unknown virus.

Secondly, I too am suffering from a painful (and random) taste bud disorder after a sexual encounter. I gave and received (unprotected) oral off a randomer (gay scene) and a week later suffered from an individual enlarged taste-bud. That tastebud then soothed and immediately after another tastebud became painfully enlarged. Of concern, this dynamic has been going of for 6 weeks now.

I've tested negative for HIV (28 duo test) which I expected and the doctor i saw had no idea about my taste buds and did not link them to any STD. However, this is definitely down to a virus do to the timings and I suspect a strain of HPV (HSV wouldn't cause an initial outbreak for so long and the taste buds would also ooze yellow) - the only thing im unsure of is if the enlarged taste buds are a direct result of the virus, or if the virus itself is symptomless but it has triggered an autoimmune response? I've read that HPV clears itself after 2 years so im hoping this will subside.

Avatar universal
by mr_worriednow, Apr 20, 2015
Okay, in the fight against this unknown virus (possibly an HPV strain), I have now resorted to natural oregano oil that is extracted from the plants that grown in the Meditarranean mountains. Apparently its one potent son-of-a-gun with regards to bacteria, fungi, viruses and parasites. Ha, i'm hoping that this unknown virus has evolved from pathological ancestors that have only know (and fought) man-made synthetic compounds. Alongside oregano oil i'm also taking vitamin B, vitamin C, bonjela, sambucol, lysterine and cordosyl. Next purchases will be aciclovir, isoprinosine and indonal if things don't improve.
Although, I've been adding a few drops of oregano to a litre of water and i think things are improving.....lysterine and bonjela also appear to have noticeable effects.

Will update in due course.


13494641 tn?1430651716
by David101183, May 13, 2015
I've seen 3 doctors and a ENT. If I hear thrush again from them, my head is going to explode.

Avatar universal
by livn_learnn, May 13, 2015
Hi Ashler I've not been on the forums for a while.  I've been looking into amino acids to treat my herpetic early on set undiagnosed dementia. (Lysine seems the best one right now.)  Have you found any OTC enzymes or amino acids that may help your dry mouth?  
From my experience, I would say try them conservatively, as these can counter what I'm trying to accomplish.
Wishing you well!

Avatar universal
by Sunshine965, May 26, 2015
Hey ashler any updates? I was diagnosed with OHL due to EBV. Mouth not that dry but my saliva is thick and sometimes i get dry throat at night. Hope ur getting well.

Avatar universal
by Angelinaaa, Jun 20, 2015
للبف

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by Need2knoww, Aug 03, 2015
How are you responding to your SS treatment?

Do you have any relatives with autoinmune diseases?

Avatar universal
by livn_learnn, Feb 10, 2016
Hi Ashler1977, I am wondering how you are doing.  I'm still undiagnosed, but still have hope of getting real diagnosis.  How about you?

Avatar universal
by stevecologne, Mar 04, 2016
Any good news from anyone (healing), especially from Ashler1977? What happened to you Ashler1977, can you give us an update? I would also be interested in an update from Sunshine965! I'd like to know if there is any effective treatment, and how long this disastrous illness lasted for you guys. Thanks!

Avatar universal
by ashler1977, Mar 05, 2016
there's no cure for salivary gland dysfunction, you only can treat the symptoms for temporary relief.

http://rheumatology.oxfordjournals.org/content/41/4/416.long
http://www.ada.org/~/media/ADA/Science%20and%20Research/Files/CSA_Managing_Xerostomia.pdf?la=en

Avatar universal
by ashler1977, Mar 17, 2018
Hi all,

I wasn't here for a long time. It's March 2018 now.


Basically this is a chronic problem so I just had to learn to live with it. I have chronic xerostomia and no-one knows why. I am using Biotene, drinking lots of water and chewing gun on daily basis to relief my symptoms. Sadly there's nothing we can do about this.

Avatar universal
by oumporto, Mar 23, 2018
I have exactly the same symptom after  an antibiotioc therapy
During the antibiotic therapy, my tongue was very very dry and swollen

1 month after antibiotic therapy, my problem persist ( Some enlarged taste bud  with red spot)

I also have GERD and im breathing with my mouth during the night,  that's why my problem  is worsen after each night ...

If you have a virus, there is  some advice :

- Take LYSINE, lysine decrease  the activity of ALL virus,  virus use arginine to grow,  when you have  a lot lysine in your body, arginine  decrease

- Beta glucan ,lactoferrin, AHCC,  these 3 supplement can help your immun system to get rid of any infection

- Probiotic , maybe you have candida or something like that ?  




Avatar universal
by oumporto, Mar 23, 2018
Also for you chronic xerostomia : Use Xilymelt , xilymelt s an  oral-adhering discs that stick to your teeth or gums to relieve  dry mouth

You can use this during the night  !

I have a question : Your taste bud decreased in size ?

Avatar universal
by oumporto, Mar 23, 2018
Last question : Did you test' your CRP ? ( c reactive protein )  if  you have SS or auto immune disease , your crp  must be high



Avatar universal
by ashler1977, Mar 25, 2018
Hi, my tests are public and they can be seen here

https://docs.google.com/spreadsheets/d/1PYhZ7zVJUnFpZ7Pd1s6FGQfzC70xkoHbzE3-ud1bVG0/pub?output=html#

Avatar universal
by jay_1985, Apr 19, 2019
Hello Ashler,

I've been following your journey as I have very similar symptoms, I am tired as well of people saying I am obsessed and overreacting. I do associate my condition with an unprotected sexual encounter like you. We are in 2019, how are you these days, any improvements, new discoveries?
Thank you so much for share your case, hopefully you have it figured out by now.
Regards,

Jay



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