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Long standing dry mouth

Apr 19, 2014 - 116 comments
Tags:

dry mouth

,

long standing

,

xerostomia



As you know I am suffering this for almost 2 years now. This appeared out of the blue in June 2012 (I say out of the blue because I don't take drugs, don't smoke, don't have diabetes, didn't have chemotherapy, and didn't take medicines for long periods of time -besides 1 week of cyprofloxacin in March 2012).

I had a sexual exposure in February 2012 with bizarre symptoms exactly 2 weeks later that lead me to think on HIV (a cervical swollen lymph node, neck stiffness and then an urinary track infection), but I tested negative several times. In any case, I think the problems on my tongue are related to that encounter. Girl I was with refused to test for anything.

Last week I went to a dermatologist who ordered a series of tests including HIV (despite being tested negative several times with both Elisa and PCR), syphilis and other tests.

I found an interesting article on xerostomia that might be interesting to read:

http://surgical-dentistry.info/files/Oral_Medicine_Oral_Surgery_Oral_Pathology_-_An_update_of_the_etiology_and_management_of_xerostomia.pdf

For information, I am in my mid 30's, heterosexual and I was healthy as a horse until February 2012. I have a stable partner and we use condoms. We want to have babies, but I won't dispose of condoms until I find what's goin on with me.

As usual, I will keep updating my journal until I find what's causing this.

Comments
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Avatar universal
by Blessedtb23, Apr 19, 2014
Xerostomia have all they signs n symptoms I have. I mean all of them I really feel like we getting closer n closer to finding out wat this is.. I hope we find out soon .

Avatar universal
by ashler1977, Apr 20, 2014
we know we have xerostomia. the big question is WHY we have xerostomia.

Avatar universal
by Blessedtb23, Apr 20, 2014
Yeah that's d big question they say it's not contagious but I'm still scared I don't kno

Avatar universal
by ashler1977, Apr 21, 2014
well, xerostomia is not contagious itself. however, if we have this because of a virus or a bacteria, this could be infectious.

Avatar universal
by Blessedtb23, Apr 21, 2014
Yea I kno my fiance ready to have babies but I'm scared too at the moment just want all this to be over

Avatar universal
by ashler1977, Apr 22, 2014
OK, just came back from the dermatologist.

The bad news is that he found two (new) strange bacteria on my tongue:

Klebsiella pneumoniae
Citrobacter freundii

I have been given some antibiotics to clear this. My guess this bacteria is the result of my dry tongue. As there is not enough saliva to combat pathogens, some weird bacteria is forming there.

I also got the result of another HIV test, which is negative.

I also got the results from some cell immunity tests I had some weeks ago. There's a drop in lymphocytes which also has caused a drop in my CD4 count. It went from 667 in October 2013 to 515 this month (hopefully, the CD4% remains stable). Details of my results can be seen here:

https://docs.google.com/spreadsheet/pub?key=0AoXYb8O_eRNhdHdKVERqWk8wOFBuOWxGb0dNOUw5LVE&gid=3

Something is definitely wrong with me and I won't stop until find what's going on.

Avatar universal
by learning550, Apr 24, 2014
keep us posted. According to my research.....these both are  aerobic gram-negative bacilli... don't know anything about it...



Avatar universal
by ashler1977, Apr 24, 2014
they're. and they're there because of my dry mouth. saliva is needed to keep away unwanted bacterias, as I don't have enough saliva, then these start to overgrow.


Avatar universal
by learning550, Apr 24, 2014
you should go to a diff. dr and repeat those test...just to confirm

Avatar universal
by ashler1977, Apr 25, 2014
well, I am having a treatment now to kill this bacteria and will have a test repeated to see if treatment worked.

Avatar universal
by twistedbuckeye, May 08, 2014
ashler:  two years later I have stumbled on your tongue troubles.  Im in my early 50s.  Five years ago, i went to the doctor with a white swollen tongue. Tried three different antibiotics.  Doc said he couldnt help me anymore and sent me to an Ear Nose Throat guy.  He said: it aint cancer.  whoopee.  He wanted to give me prednisone and gargle twice a day with Listerine, ONLY LISTERINE and thats all he could do.

I went to different dentists.... One told me to go to a research hospital as he had no idea what was wrong with my tongue.
As i sit here today, I have just gotten over a really *insert cuss words* bad week of "the tongue".  Sometimes it feels like I'm actually swallowing it.  I dont have money to run doctor to doctor.  I am female and have long though that it might be thyroid. ?  My gynecologist said:  nope and shut me down on asking any more questions.

I havent read all your posts, but I am trying to.  I just want to tell you something. My tongue has the white film.My tongue occasionally looks like it has blue/black down the middle.  I CURRENTLY have the enlarged taste buds at the back of my tongue.  I ALWAYS have teeth marks down the sides of my tongue, my doctor and dentist sees them.    You believe your tongue troubles to be from a  sexual encounter?   I got my tongue troubles and had NO sex for five years previous and no make out type sessions with anyone.   I know mine wasnt from that UNLESS something lays dormant for five years besides HIV/ AIDS? I dont smoke, dont drink, dont do drugs, dont eat red meat, change my toofbrush regularly, get my teeth cleaned every 3 months.  

I hope you are taking a good MULTIVITAMIN. All those antibiotics are wreaking havoc with your compromised system.
I AM SO SORRY FOR YOUR TONGUE TROUBLES, I FEEL AND LIVE YOUR PAIN EVERY DAY.  I PRAY you find out what is causing your problem so you can get it taken care of.  Thanks for documenting your tongue troubles.

Avatar universal
by wolanda, May 11, 2014
Ashler, I think your troubles cause hpv. Only hpv. I have hpv in mouth too and my tongue is like yours. Sorry for my English. I have all symptoms like you. And how is look your bottom of tongue?

Avatar universal
by ashler1977, May 11, 2014
Hi @wolanda

why do you think is HPV? I have never seen an article relating dry mouth as a consequence of HPV infection (so far, I think only viruses as HIV and Hep C do cause dry mouth).

If you have something to back up your info, please share.

Avatar universal
by learning550, May 12, 2014
one question, if it's caused by HPV ..don't you think your partner or someone else who you will kiss etc.. will develop similar symptoms too?

Avatar universal
by Frenchies, May 12, 2014
Hi Ashler,  I have the same symptoms for about 10 months. It occurred during while dating this man.    I have white tongue, red spots on sides and front of tongue, skin tags under tongue, I also feel something on my tongue when I swallow.  My gums look bad and they hurt.  How are your gums? Do you have any white spots on lips or has any bumps spread to your face?  I feel sick sometimes from all of this!  I have been to numerous doctors and had a multitude of same
tests,  which have been pretty much normal.  I had tongue biopsy which revealed something is causing trauma to tongue. I can't get an answer
either.   Very scared and concerned.

Avatar universal
by ashler1977, May 13, 2014
How old are you?
have you been diagnosed with xerostomia (dry mouth)?
Did you have unprotected sex with this man?

How are your gums? - They're not too good but not too bad
Do you have any white spots on lips or has any bumps spread to your face? - No

Avatar universal
by Frenchies, May 13, 2014
I'm 43 years old.  Yes, I was diagnosed with xerostomia in the beginning of all this. I had unprotected sex with him. All these doctors keep telling me it's tastebuds .  Tastebuds would not last this long on your tongue. They would come and go and change places on your tongue. The red spots have been in the exact same place for this whole time.  Gums are pale pink at teeth and purple underneath. Little sunken in.   After tongue biopsy, one of the spots grew back,  told me it was scar tissue. Sometimes I get an ulcer on right side of tongue. Very painful. I get the teeth marks in my tongue also.  

Avatar universal
by Frenchies, May 13, 2014
I was wondering if you still had swollen cervical lymph node and neck stiffness?  I have both of them since September, the neck stiffness comes and goes but lymph node still there.

Avatar universal
by Frenchies, May 13, 2014
I was wondering if you still had swollen cervical lymph node and neck stiffness?  I have both of them since September, the neck stiffness comes and goes but lymph node still there.

Avatar universal
by ashler1977, May 13, 2014
swollen cervical lymph node and neck stiffness I had shortly after my sexual exposure (2 - 3 weeks afterwards). they dissapeared some days after.

can you please post pictures of your tongue?

Avatar universal
by Frenchies, May 13, 2014
Can you tell me how to post picture?  I have several of them

Avatar universal
by ashler1977, May 13, 2014
in your profile, click in "photos" and then upload a picture(s)

Avatar universal
by Frenchies, May 13, 2014
I can't seem to download photo from phone. Any suggestions?

Avatar universal
by twistedbuckeye, May 13, 2014
A couple months ago on our local news they highlighted a story about a woman who had tongue troubles.
She had a ton of tests done, went to all the specialists....

They called her disorder:  BURNING TONGUE....  anyhow.... the cure?   aint one.  The good news is.... the pain
subsides after about five or seven years.... most of the pain that is.

Anyhow, if you folks can get to it, here is a link..... should be a video to the story.   The only comfort I got was that I am not alone.   But then I feel bad that so many others are suffering too : (

http://search.woio.com/default.aspx?ct=r&q=burning+tongue      If the link doesnt work:  type in browser, nineteen action news, search box: type in burning tongue.

ashler: what geographic area are you from?    I'm in Ohio.

Avatar universal
by Frenchies, May 14, 2014
Sorry, I couldn't post picture, but your tongue looks like mine. My tongue burns intermittently also!! The spots on side and in middle of tongue are very similar. Tastebuds shouldn't burn.  I have these rough bumps in back of tongue also since July of last year. Never have gone away.  I just feel the doctors are not listening to what I say. I never had this prior to relationship. Do you know the status of the girl you had encounter with?  Is she feeling ok?

Avatar universal
by ashler1977, May 22, 2014
The status of the girl I was with is unknown and she never wanted to test for anything.

I had a Schirmer's test and dry eyes has been also confirmed. Going to reumatologist on 4th June for further evaluation. Dry tongue problems persist.

Avatar universal
by livn_learnn, May 22, 2014
Hi again, I noticed that any doc that I mention another person exposure, I get no answers.  So now I stop mentioning exposure and got 2 diff docs asking if I've been tested for fibromyalgia or MS (multiple sclerosis).  I'm guessing many of us are on early deterioration of our immune system (body functions) due to virals hits to our system.  I'm hoping stem cell 'fixes' will soon become available. (Like before I die.  I've been feeling sooo bad, I just assume the MS diagnosis will show up, or ALS.... or encephalitis. )   These viruses may be more common than we realize.  I can't get the doc to order me an MRI. She needs more convincing...  and I guess no doc wants to give someone diagnosis when there is no good treatment, especially MS.

I'm also thinking you are having complications from HPV.  

Docs prolly don't know what immune response each of us will have to give diagnosis.  There must be lots of blood tests.  I show some psoriasis, and my vision is deteriorating.  I wonder if it depends on the timeline sequence of virus type exposure.  Gosh I'm even losing my memory for spelling and education.  Which really is the pits!  Because I don't have close family to help me as I deteriorate.

Again, thank you for sharing.  So many of us are feeling frustrated with our symptoms that have no diagnosis.  Today feels like the longest day of migraines for me.... sure hope relief will come SOON.

Hang in there!

Avatar universal
by Batteryshop01, May 26, 2014
Did you get a blood test for HSV_2 yet? HSV-2 dries out all your mucus membranes in your body. Like your tounge, gums, eyes nose and ears. So much so that its very bothersome nearly all the time. No one in the medical community wants to address the issue.






Avatar universal
by ashler1977, May 27, 2014
Please post a link to scientific paper support your affirmation that HSV-2 causes dry tongue, eyes, etc.

Avatar universal
by livn_learnn, May 30, 2014
That HSV-2 comment by Batteryshop01 would explain A LOT to me, about the 'toad' I kissed!  Unfortunately, if i have this, it may be traveling through my body to my lower parts!!   (And i add another questionable lie by another one of my doctors, who said its not transmitted mouth-to-mouth.).  

I'm thinking one day the scientific world will be able to prove who gave us our illness by DNA attached to the virus cell upon transmittal ( maybe this technology already exists.). Something to do with genome I suppose.  

I would also love to hear about any results of stem cell HSV treatment studies.  Hopefully scientists will find ways to turn off the viral replication process.  And I hope soon.....  Someone will be rich if they find this breakthrough!

Avatar universal
by Frenchies, Jun 03, 2014
Can anyone comment on how there teeth look? Are you losing any enamel off teeth?

Avatar universal
by ashler1977, Jun 03, 2014
no problem with my teeths so far.

Avatar universal
by livn_learnn, Jun 03, 2014
Ashler, I wonder if the gluten-free and/or auto-immune paleo diet would help you.  There is also something called FODMAPS that I'm looking into as well.  I don't think a medical treatment is yet available to fix our issues.

This allergy diet work around may really flip the current product marketing in USA.   I think we will even need to look at what type of cooking oils we use.

Avatar universal
by ashler1977, Jun 05, 2014
My lymphocytes are falling:

October 2013 -- 1710
April 2014 -- 1390
June 2014 -- 1230

:(

Avatar universal
by ashler1977, Jun 05, 2014
I think we need a test like this to identify the root of our problems:

http://www.nytimes.com/2014/06/05/health/in-first-quick-dna-test-diagnoses-a-boys-illness.html?smid=fb-nytimes&WT.z_sma=HL_IAF_20140605&bicmp=AD&bicmlukp=WT.mc_id&bicmst=1388552400000&bicmet=1420088400000&_r=2

Avatar universal
by livn_learnn, Jun 06, 2014
Seems like they used to be available....

https://www.23andme.com/health/


Avatar universal
by livn_learnn, Jun 06, 2014
Or maybe its type of test...

http://www.metametrix.com/test-menu/profiles/gastrointestinal-function/dna-stool-analysis-gi-effects

Avatar universal
by learning550, Jun 11, 2014
Did you repeat the test after completion of the Antibiotics to make sure those bacteria are still present or not?


Avatar universal
by watashianata, Jul 13, 2014
Hi Ashler,

I actually have the same problem. The different part is I have growing taste buds. 3 years ago I had protected sex with a male (I am a male) and a few months later. I was found to have caught warts. It was pain, but I successfully got rid of it. Negative for 2 years now. However about 1 year ago, I found there was an enlarged taste bud on my tongue. I didn't pay attention because I have geographic tongue, which is some kind of tongue inflammation. But the enlargement seemed to be growing. I connected it with the warts problem (since I gave oral too) so I found an ENT doc. He resected the bump on my tongue and did biopsy. It showed squamous cell papilloma. HPV (-). I was happy it wasn't wart. However when I looked it up myself, it said benign HPV 6,11 infection though pathology won't show HPV (+) in all the cases.

Right now I am kinda paranoid since my geographic tongue problem causes my rase buds swelling all the time. I am just scared those swollen buds could be warts. Very upset here...

I am thinking your swollen tasted buds could be the same. You could have one resected and biopsied. I mean it could be the best way to find out.



Avatar universal
by ashler1977, Jul 14, 2014
when you say you have the same problem, you mean you have dry mouth/xerostomia and therefore you produce very little saliva to keep your tongue wet? that's the problem I have.

as for biopsy, already did that:

http://www.medhelp.org/user_journals/show/728423/oral-patologist-found-something-on-my-tongue


Avatar universal
by ashler1977, Jul 14, 2014
by the way, @watashianata, have you had already HIV performed outside the window period etc?

Avatar universal
by watashianata, Jul 14, 2014
Yes. I was horrified I had HIV Tested 3 times in 3 different locations in 4 months.no sex in the 4 months of course

Avatar universal
by livn_learnn, Jul 16, 2014
This webpage lists products like Natrol to stimulate saliva.
   http://www.oralcancerfoundation.org/complications/xerostomia.php

Since my doctors have shut me down on answers (by golley, I'm the healthiest obese person you'll ever know!), I assume I have something herpetic even though the doctors totally deny it since I'm not showing papules with my rosacea and I also assume the bumps/skin tags in my mouth and on external neck are HPV.

Doctors are intentionally lying, I don't understand why, except we must be able to sue someone for bodily injury.  These viruses can be so easily transmitted, even by just sharing a beverage, straw, or utensil, and there is no cure or best treatment - until perhaps it blatantly shows as cancer.  

Until we get some break through immune system reboost, we can only do what is available to us and it doesn't seem I will  even get an antiviral to try - so diets like no carbs, no sugars is what I need to try to accomplish.... basically starve the bodily  'system' by avoiding the triggers.  Since sugary foods like pastry, lattes, and chocolate are my addiction, I have a long haul ahead of me... on top of the depression I've been fighting for years.

Good Luck to all of us!

Avatar universal
by ashler1977, Jul 21, 2014
"These viruses can be so easily transmitted, even by just sharing a beverage, straw, or utensil, and there is no cure or best treatment"

I don't think so. I got this by receiving a fellatio (the intercourse was with condom), so this is something sexually transmitted, I think. My partner is totally healthy, and I am protecting her by using condoms and avoiding oral sex.

Avatar universal
by livn_learnn, Jul 27, 2014
Sorry for being so general in my statement but I'm guessing if a virus is found in saliva or in the mouth then it can be transmitted mouth to mouth.  I know most websites and doctors don't pin down that answer but the mere push for immunization of HPV makes me think it spreads easily.

http://usatoday30.usatoday.com/news/health/medical/health/medical/cancer/story/2012-01-26/Oral-HPV-infections-more-common-than-expected/52795342/1

I didn't even know herpes can be fatal to infants until I read a recent story about circumcised baby boys, using a ritual from many many years ago.

I'm so happy your partner does not have what you have!  

I wish I could find magic pills to boost my immune system so i can feel better.

Avatar universal
by angela1231, Aug 13, 2014
I am currently experiencing the same thing after having a sexual encounter, the doctor says its oral thrush and has prescribed me with anti-fungal meds but they are not working! I am 22 years old and i will be going back tommorow for more tests.. Reading your posts this condition has baffled me, have you tried taking into account dietary changes? are you experiencing any stress? my condition appeared after being overseas for 4 weeks which consisted of a very unhealthy diet and a lot of alcohol which may be a underlying factor, keratosis could also be a possibility..
Would be great if you can keep updating on your current condition.

Avatar universal
by 0321cja, Aug 27, 2014
I have been having this problem too bout 4 months ago I put myself at risk. All my results keep coming back negative I took hiv test 3 times. Ive been producing a lot of saliva , kinda white swollen tongue swollen taste buds and  I had a lot of allergies but Juss recently i went to the docs again and I was giving a penicillin shot and amoxicillin to take home I felt kinda better I was itchy all over my face too. I feel I have poor circulation I ask the doc if it's  hpv she said no but reading all these post makes me believe different.

Avatar universal
by ashler1977, Oct 05, 2014
I am currently seeing an oral and maxillofacial surgeon whon has sent me for a gammagraphy of the salivary glands due my chronic symptoms (started June 2012) in two weeks.

http://www.san.gva.es/documents/151744/512119/Gammagraphy+of+the+salivary+glands.pdf

For those who read for the first time, I have a dry and white tongue, and very thick and sticky saliva. All these symptoms for more than two years in a row now. Symptoms came out of the blue but as I said before, I related them to the sexual exposure I had in Feb 2012. I was healthy as a horse before that.

Avatar universal
by Frenchies, Oct 09, 2014
Still have same symptoms also, going to specialty hospital in 2 weeks. I will be seeing an infectious disease doctor and a ENT doctor. Also I will be seeing a nationally recognized internal medicine doctor, who is known to diagnose undiagnosable conditions. I will let you know what is discovered.

Avatar universal
by ashler1977, Oct 12, 2014
A very interesting article:

Is Sjögren's syndrome a retroviral disease?
http://arthritis-research.com/content/13/2/212

Avatar universal
by Blessedtb23, Oct 13, 2014
Does this mean we Might have some Type of hiv please tell me no lord

Avatar universal
by ashler1977, Oct 14, 2014
After all the scientific papers I have read, it seems that viruses such as HTLV, HIV, Hepatitis C or some unknown retrovirus mess up with the immune system and cause symptoms similar to those of Sjorgen (xerostomia, etc.). I am not sure if bacteria can also trigger a similar reaction.

Did you ever had CD4 and CD8 counts? My CD4/CD8 ratio was normal (more than 2) which is different of the ratio seen in HIV patients (less than 1). My CD4 was, however, low (515 last time)

This Friday I am having a gammagraphy. Regardless of the results I will ask for a lip biopsy

http://www.hopkinssjogrens.org/disease-information/diagnosis-sjogrens-syndrome/labial-gland-lip-biopsy/

Avatar universal
by Blessedtb23, Oct 14, 2014
Yes mine was in the normal range

Avatar universal
by Blessedtb23, Oct 14, 2014
In my doctor tell me if it was hiv we wouldve been had it after these years

Avatar universal
by ashler1977, Oct 14, 2014
what do you mean 'normal range', what were the results exactly?

Avatar universal
by Blessedtb23, Oct 14, 2014
She told me my cd4 n cd8 was normal she didnt give me the numbers exactly

Avatar universal
by ashler1977, Oct 20, 2014
I contacted the author of the "Is Sjögren's syndrome a retroviral disease?" article and he was kind enough to answer me:

Dear XXXXX,

Thank you for your interest in my work. I am an infectious diseases specialist and my article summarized the existing evidence on the implication of retroviruses in the pathogenesis of Sjögren's syndrome. As you probably noticed in my review there is not definitive evidence that a specific virus causes SS, which is a multifactorial disease. Your condition requires the attention of a rheumatologist. If you don’t take any drugs and you have no other conditions causing xerostomia, such as HCV, HBV,HTLV, HIV infection diabetes, thyroid disease, sarcoidosis, amyloidosis or tuberculosis, then the most probable diagnosis is primary or secondary Sjögren's syndrome. You will need to do ocular staining and biopsy of minor salivary glands to establish the diagnosis. Check also for chronic infection by CMV or EBV viruses. Please refer to a rheumatologist with experience to Sjögren's syndrome.

I wish you a rapid diagnosis and recovery.

Avatar universal
by ashler1977, Oct 24, 2014
Gammagraphy results came back and it shows a "significant decrease in the salivary glands functions". This is the reason why I have dry mouth for +2 years now.

I am going for a lip biopsy on 7th November

Avatar universal
by ashler1977, Oct 26, 2014
Xerostomia due to systemic disease: A review of 20 conditions and mechanisms
http://www.amhsr.org/article.asp?issn=2141-9248;year=2014;volume=4;issue=4;spage=503;epage=510;aulast=Mortazavi

Avatar universal
by ashler1977, Oct 27, 2014
A reply from an institute specialized in HTLV:

Dear xxxx

Sorry to hear about your xerostomia.
Your results for HIV are all clearly negative and supported by the normal CD4 and CD8 counts.
You have had one HTLV screening test which is negative. This was done many months after the sexual contact that concerns you and therefore should have been positive if you had been infected with HTLV-1 at that time (or before).
You may be aware of a literature relating to Sjogren’s Syndrome and detection of DNA sequences that resemble the HTLV-1 Tax gene, in the absence of HTLV-1 antibodies. It is not clear whether this is a true finding but it might in your unusual case be worth pursuing. Also, have you undergone biopsy of a salivary gland?
In the first instance I would suggest repeating the HTLV serology – with a different assay, if that is still negative then requesting HTLV-1 DNA PCR (using primers that amplify the Tax gene) would be the next step to exclude the possibility described above.

Avatar universal
by Tufty3926, Feb 22, 2015
All you people need to get tested for htlv. Transmitted same as hiv and is a retrovirus cousin of hiv. Causes ars symptoms and destroys immune system. I have tested negative for hiv via rna and 4th gen out to 19 weeks. Look at htlv. 20-25 million worldwide. 95% have no symptoms but for us unlucky ones there is no treatment and no cure

Avatar universal
by ashler1977, Feb 23, 2015
it seems you didn't see the lists of tests I have done:

http://goo.gl/a2h7qV

Avatar universal
by wantonjoe, Feb 28, 2015
Hi Ashler,
What were the results of your biopsy? Did it shed any light on whats causing your xerostomia?

And did you find any reason for your mild leukopenia?

Avatar universal
by wantonjoe, Mar 01, 2015
Hi Ashler,
I noted that you were diagnosed with a salivary gland disorder, I just wondered if you knew what had caused the disorder.
If it was linked to a virus or something else? As you mentioned that your problems began shortly after a sexual exposure.

I also have xerostomia, white coated tongue (thicker at the back). If I sip 2 litres or more of water throughout the day, two-thirds of the tongue return to a normal pink colour, but the back remains thickly coated in white stuff.

An HIV specialist and a dentist have both said it is not oral thrush, and an oral culture swab taken by a GP came back negative for thrush (although these cultures are not totally reliable).

So, I believe the white coat is being caused by xerostomia. In my case, it also started about 4 weeks after an oral sex exposure with a CSW. I was diagnosed with acute EBV (mono) 3 weeks after the exposure, in which I had swollen cervical lymph nodes. I am currently not sure if EBV has caused the xerostomia or whether its something else. All the cervical lymph nodes have returned to normal.

The EBV caused my lymphocytes to rise and neutrophils to fall, which is fairly typical, but my latest results (3 months after acute mono) have me worried. Neutrophils are down to 1.87 (my baseline normal level is 3.2) and lymphocytes are 2.45, they have been higher than neutrophils for the last 3 months. In a regular healthy person, neutrophils should always be higher.

Have tested negative to HIV 7 times , from 3 weeks to 15 weeks post exposure.  
Still looking for answers!

Avatar universal
by ashler1977, Mar 01, 2015
"I believe the white coat is being caused by xerostomia"

If you think you have xerostomia, which is caused because your salivary glands are not working properly (they don't produce enough saliva), then you should do a salivary gland function scan:

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

My xerostomia means my tongue is totally dry and I need to be chewing gum otherwise my mouth does not feel wet. i also have problems to speak when I am not chewing gum or drinking water. If you don't have these problems you probably don't have xerostomia.

"Swollen cervical node"

You mean you had something like this?

http://upload.wikimedia.org/wikipedia/commons/c/c2/Ixodholfem8.jpg

Avatar universal
by wantonjoe, Mar 02, 2015
Hi Ashler,
Dentist confirmed xerostomia.
My mouth feels totally dry, although it does not seem as advanced as yours, as I dont have problems to speak when not chewing gum/sipping water. My voice is softer because of the xerostomia, but it is not difficult to speak.
Maybe this is because I have only had the xerostomia around 3 months now.
However, my gingivitis has got worse since dry mouth began - i always used to bleed a small amount when brushing, now sometimes it can be very bad.

Yes swollen cervical node looked like the photo, when I was in the acute phase of mono infection. Now it is normal.

Avatar universal
by ashler1977, Mar 02, 2015
OK, so next step for you is to do this to check your salivary gland functions:

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


Avatar universal
by wantonjoe, Apr 02, 2015
Ashler  my friend,
how are you doing these days? Did you get the sjogrens diagnosis? Or you are still not sure what is causing your dry mouth?
Do you have any other symptoms currently?

My mouth remains dry but I am able to get it under control with regular sipping water / tongue scraping. Tongue still has thick white buildup towards the back.
I have recently had the problem of angular cheilitis on corners of my mouth, which came /went within a few days, then reappeared a week later.

When I wake up, I have small white sticky bits on my mouth. It seems like candida , but I am not sure.... a previous tongue culture for candida 2 months ago was negative. Also have tested negative to HIV upto 4.5 months after exposure.

Still very troubled by my symptoms. Let me know how you are getting on..

Avatar universal
by Angelinaaa, Jun 19, 2015
Ashler and everyone else who has been commenting here how is everyone doing? You all have been my support system for several months now. Before I start telling my story with all my symptoms please update me.

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by Tufty3926, Jul 09, 2015
You still about ashler

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by ashler1977, Jul 11, 2015
I am being treated for sjogren despite i dont have all the usual sjogren labs (my reumatologist tests are negative and this is a condition that affects mainly elderly women)

Summary: I was healthy as a horse but after a sexual experience I had what it seems a viral infection that triggered an autoinmune response that is attacking my salivary glands.

After +3 years from incident, xerostomia is getting worst. Lately I have noticed as well my voice is changing and I have a sort of chronic sore throat. I have the impression the more I talk the more damage I do to my vocal chords and throat.

I am currently on plaquenil and also salagen (to increase the amount of saliva and moisture my mouth).

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by wantonjoe, Jul 15, 2015
Hi Ashler,

Good to hear from you. How are these two medications working for you? Have you seen benefits?

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by Angelinaaa, Jul 27, 2015
I'm a 28 year old female...I will start from the begining with my very first symptoms to now (symptoms lasted 4 months)
I hope by documenting everything it might help me and other figure out what this unknown virus is? My so called exposure was a open mouth kiss (lasted not even 5-10 seconds)...Symptoms started exactly 2 weeks after.

Tingling feeling on chest, mild chills, Insomnia, Enhanced sense of Smell, Horrible taste in my mouth (bitter taste lasted 2 months) Complete loss of Appetite (for a week), Soar throat (3months) swollen tonsils, Burning body to the touch (2 days) Extremely cold toes, Headaches, Blurry Vision/sensitive to light, Derealization, Anxiety attack (adrenaline rush), All symptoms are gone now except I have slightly white tongue to the back with swollen taste buds in the back...also extremely scalopped tongue with red dots on the tip and sides. Tested for all STD's came back negative...but I'm convinced it's a virus...just not sure how serious this is...very scared.

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by Angelinaaa, Jul 27, 2015
I forgot to mention I also have tongue tags under my tongue. Doctors keep telling me my tongue looks normal....but it really doesn't, it didn't look like this before, and it seems as though I don't produce any saliva when I'm sleeping. Tongue is mostly scalopped in the morning. They almost made me believe that this was all due to high stress and anxiety... I agree I did because my initial thought was the deadliest STD,....
I was so convinced that it took me several months before I went to get tested...all negative
What are your thoughts? I'm extremely scared...completely lost...What else should I be testing?

The only thing that came back positive is HSV..not sure which one..but doctor's didn't seem concerned about it at all.

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by Frenchies, Jul 27, 2015
Your tongue sounds exactly like mine. I have the tags under my tongue. Tongue very scalloped and red spots on tip and sides. Mine occurred after having oral sex with this man I was dating.  He refused to get tested. It also has affected my teeth and gums. I've been experiencing for 2 years, have had a million tests. All negative. Very scared myself. I  get these episodes of flu like symptoms once in awhile and then it goes away. I'm just trying to stay positive, hoping I can figure out what this is. I think it's a virus also that I got from him

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by Angelinaaa, Jul 27, 2015
Are your gums receding? What did the dentist say? Did you have any digestive issues before? Have you been with anyone since that incident?

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by Frenchies, Jul 27, 2015
My gums are not receding., but I have gingivitis and my teeth are losing enamel.  My bottom four anterior teeth. Feel brittle and are painful. Sometimes I get nauseated and have vomiting But no other issues. I have not dated anyone. I'm afraid this is contangious and I don't want to give  to anyone else.  I'm very sad

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by Frenchies, Jul 27, 2015
I was totally healthy before all of this. Exercised 3 times a week. Ate very healthy. Very active. Now, sometimes I just have the energy to do anything:(

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by Angelinaaa, Jul 28, 2015
well if this helps at all im in a serious relationship and when i thought this was due to stress i tried to move on. My boyfriend didn't catch anything from me.. his tongue still looks the same he is healthy no issues. Were you stressed or did you have anxiety issues before all this? The person you were with is he ok? Did your dentist put you on any meds?

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by Angelinaaa, Jul 28, 2015
I think whatever this virus is it's easily transmitted through saliva....I just hope it's not as serious as I thought it was. I'm also extremely sad you have no idea...but you have to keep telling yourself you are here so live. Have you been tested for HTLV?
Do you think this is the cause of HSV2? What have you been tested for? At one point I thought maybe it has to do with different dna's it was the first time I got this close to someone from a different ethnicity.

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by Frenchies, Jul 28, 2015
I did not have any stress in my life at all. I don't talk to the person I was with. He treated me like I was crazy. I'm not on any meds. Just eating really healthy. I've been tested for everything. All negative.  I'm just not willing to date anybody. Don't want to take the risk to give to anybody

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by Angelinaaa, Jul 28, 2015
The guy use to work with me he seems completely healthy, happy goes to the gym and all...I begged him to get tested and said he always gets tested nothing wrong with him and made me sound crazy by saying "we did nothing other then a kiss, it's impossible".
I felt like I was harrassing him at one point kept calling him even offerd him money ... he came back with a doctors note with the dr's signature and it said" xxx name of the guy...does not have any STD's".

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by Frenchies, Jul 28, 2015
Oh my goodness. That sounds just like the guy I dated. Have u deeply kissed your present boyfriend.?   It's nice to talk to u. Because I feel ver alone and scared

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by Angelinaaa, Jul 28, 2015
yes I have...because doctors made me believe this was all due to stress and guilt...because the guy was married with kids. I overly stressed myself out of guilt it was the first time I did something SO stupid. If you read my symptoms I had anxiety attacks due to this event. My current boyfriend is not worried at all I have deeply kissed ....he is completely fine. I'm the only one with the tongue issues...I have no idea what else to test for? You thought this was HIV.....so did I. I was so convinced it was that it took me 4 months to go get tested. I've called the sexual health line everyday for the past 3 months asking them if it's possible to get that from a kiss.

They all told me in the 30 years of documenting on this  it has never been known to transmit this way. So what is it?
I looked really silly when I walked into a doctors office asking to get tested for all std's especially after I told them about my exposure. i feel better as well talking to you. We will figure this out...right now mind over matter. Stay positive.

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by Frenchies, Jul 28, 2015
I am staying positive. I'm just glad I'm slowly feeling better. It was awful. Hopefully this will all go away

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by Angelinaaa, Jul 29, 2015
Are your teeth getting any better? Were you positive for HSV? and what about HPV and HTLV?

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by Frenchies, Jul 29, 2015
My teeth have just gotten worse.  Negative for all of them. Being followed by an oral pathologist, she is trying to figure this out. So frustrating

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by Angelinaaa, Jul 30, 2015
Has your nails changed? I now have vertical lines which I never did before.

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by Angelinaaa, Jul 31, 2015
have you been tested for leukemia?

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by Frenchies, Jul 31, 2015
No my nails are ok. Do not have leukemia. I've been tested for everything.   I think this is viral. Difficult to detect. And not obvious. I've had it for 2 years. Some things got better. Some things have not gone away. And some things have gotten worse. Is there any changes of skin on face?

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by Angelinaaa, Aug 01, 2015
only more wrinkles probably due to stress? What's going on with your skin? Do you have two white lines inside your cheeks? evry week i see a different doctor nobody has any idea what this is.

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by Angelinaaa, Aug 01, 2015
only more wrinkles probably due to stress? What's going on with your skin? Do you have two white lines inside your cheeks? evry week i see a different doctor nobody has any idea what this is.

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by Frenchies, Aug 01, 2015
Yes I have two white lines along my cheeks. I have these flat circular spots on my skin. I had beautiful skin. I took very good care if it. Been to dermatologist. Had biopsies  and they don't know what it is either. My advice to u is stick with one doctor so they can monitor u. Try to find an oral pathologist in your area., and c if she can help you. Where do u reside?

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by Angelinaaa, Aug 01, 2015
This is a complete nightmare... from day one I have been telling everyone I caught something ... And kept saying it's through saliva it's easily transmitted some have this virus is and are unaware with no symptoms. My body went in complete shock. Everyone kept telling me it's not an std you did nothing. I know my body i know something is not right. My gums are receding and i noticed im losing enamel on my bottom teeth. Im scared .. i just want them to diagnose me with something. You think this thing is fatal? Nothing is showing up in my blood work...all seems ok. I live in montreal, canada. Is it possible to call you one day? My main concern are my kids.... I have this horrible fear that my little one caught it as well from sharing food with me. I can explain more over the phone.

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by Frenchies, Aug 01, 2015
I've been saying the same thing. Something's wrong. My teeth are losing enamel too. My best friend is a doctor and he is baffled. I don't think it's fatal. All my bloodwork is normal too which makes me think it's viral also. I would love to talk to u. But I don't want to post my phone number on this site.  I just can't believe this has happened to me. It's devastating.  How can we share phone numbers without posting them here?

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by Angelinaaa, Aug 02, 2015
I think you can send it to me by private message when you click on my profile. where do you reside? I keep going back in time and analyze everything i did and happen.. Other the that incident my kids got the stomach flu..(gastrointestinal) diarreah and vomitting a 24 hour flu.. I also got it but only had severe stomach pain and headache which lingered for about a week. exactly one week after that all my other symptoms started. Is it related to what we're going through? possibility .. Not sure... I think our tongue issue is not our tongues.. But something is causing it... Stomach/liver/sleep... What do you think?

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by Frenchies, Aug 02, 2015
Ii live in rochester michigan.  I keep analyzing everything also but the only thing that changed in my life was him. I think it's a mutated virus that is not recognized by doctors. Maybe some form of hpv?  I keep hoping they will find out so I can get treatment. If it's available.  My symptoms happened pretty quick after being with him and I wasn't sick at all.prior to this occurring I just have not been the same since I had contact with him. How is your energy level?  Are your tonsils or lymph nodes swollen?  Does your tongue hurt or does it have a white coating on it?

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by Angelinaaa, Aug 02, 2015
i always had big tonsils they were swollen for several months but not anymore. My tongue use to burn easily also not anymore..it's white mostly towards the back I also feel that i dont produce saliva when I'm sleeping. i asked my doctor could this be hpv also saw an oral surgeon.. They only relate hpv if they see a wart. If it is a form of hpv I'm hoping we can fight this thing so it doesn't become cancerous. Also it was the first time i had kissed someone from a different ethnicity..not sure if this played a role. what were your symptoms and how long after. You've had this for over 2 years! I've had it for 9 months..Did you do an oral swab on your tongue for HPV? What are your symptoms now? My energy level is back to normal..back to the gym. the first 4 months i couldnt get out of bed. Your mind plays a big role.. If i let this depress me then i would be in bed all day but i cant let this get to me you either. Push yourself to go to the gym.. I have to stay active and fight this ... I need to take care of my kids.

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by Angelinaaa, Aug 02, 2015
I'm still hoping all my symptoms were due to high intense anxiety...although i'm pretty sure it's not. did u have a bad taste in your mouth?? Did u have a metalic or bitter taste? I did for several months with a sore throat..I keep calling the sexual health line everytime i feel like i needed someone to reassure me it's not hiv.. Although in the beginning of all this my symptoms were more similar to aids then Hiv. I'm just terrified of the future.. Terrified i infected my kids mostly...i dont think the red dots and tongue tags under my tongue are caused by anxiety. Im hoping someone will find out soon what is causing all this.

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by Frenchies, Aug 03, 2015
I first began with a yeast infection in my mouth then bumps in back of tongue. Then I had severe burning of tongue with horrible flu like symptoms. Had those symptoms for eight months. It started about 4 weeks after being with him. Mostly all the flu symptoms went away. Now it's just the oral symptoms. Yes had oral swab for hpv. It was negative. I do not have bitter taste in my mouth but my right tonsil is swollen.  I get these pains in my throat once in awhile. They just come and go. I sometimes get these ulcers in my tongue and a white coating.  I thought I had hiv too. But we don't. I'm not an anxious person. These signs and symptoms are not caused from anxiety. These are real.  I have the red spots and skin tags under tongue also.  My teeth have changed along with my gums.  This is caused from something we were exposed too.  Just keep yourself surrounded by good things. Have faith in God. Don't think of the bad things. We will find out what this is or somebody will.  

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by Angelinaaa, Aug 03, 2015
I also have one swollen tonsil didn't notice until my dentist mentioned it. i got tested for candida through oral swab.. Negative. I have two toddlers both in diapers and take a bottle. After 4 weeks of all this one of them became extremely itchy mostly at night she couldn't sleep all night... She had never done this before. Few days later she had a small rash on her cheeks almost looks like exzema looking.. Didn't look serious but still I felt all this came from me. So then of course i started reading online what are the first symptoms of hiv in kids... Read up and let me know. Few days later both woke up with a sudden severe cold and cough lasted 2 weeks. I'm not sure if i'm being irrational. All i know this virus mimics Hiv. I'm also worried I'm going to lose my teeth from this virus? Do you think this is a STD or a viral infection gone seriously wrong? Never in a million years did I think to myself I'm going to kiss someone that will make me seriously sick. I didn't go to work for a month when all these symptoms started.

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by Angelinaaa, Aug 03, 2015
Another thing not sure if it matters but a month before the incident i went to cuba for a week..and after i saw him he had just came back from a trip to the Carribeans. Also another thing after we kissed my first thought was his mouth felt dry... It was an open mouth kiss but no tongues involved. i'm going to call him up and meet with him again this week... Try to figure things out. I'm confused... It could be something as simple as we need antibiotics or something more serious.

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by Frenchies, Aug 03, 2015
I don't think u need to worry about HIV. I've been tested twice. Both negative. I think this an std. A mutated form.  It has made so sick and frustrated. I had to take two months off work. I m a nurse and I live what I do. Everyone that knows me, I'm never sick or miss work. I caught this from a doctor I was dating at the hospital I worked at  He acted the same as the person u kissed. I'm also afraid of losing my teeth. This is all so horrible

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by Angelinaaa, Aug 03, 2015
How ironic he's a doctor who made you sick. i'm seeing an ENT next week which I'm sure it's going to be useless. Is it possible that doctor really has no symptoms? I want to stop thinking about this cause it puts me so down. Are you taking anything so you're teeth and gums dont get worse. Did you stop eating sugar..? I'm starting to feel desperate i have two beautiful children.. they're my life... I've only been sexually active with one person my whole life.. And then this guy whom i kissed .. Horrible mistake...worst luck ever!! I don't know what to do.. i'm living my life with constant fear of what will happen next? What did i bring home to my kids?

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by Angelinaaa, Aug 04, 2015
So I went to see him today...made him open his mouth lol...he thinks I'm going crazy but I really don't care. Nothing wrong with his tongue, teeth or mouth.
Could stress have caused all this? I did suffer extreme stress and anxiety for the first time in my life...and always suffered a bit IBS. If this was all from him wouldn't he, his wife and kids be sick too??

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by Frenchies, Aug 04, 2015
I have been using prescription toothpaste called prevident. I've always eaten healthy. Sometimes I have sugar.  I think this virus only affects people that are receptive to it. People are carriers and never have symptoms and live a normal life and pass it on to others. Where else would u have gotten it from?  I've dealt with people with severe anxiety during my nursing career and I've never seen or heard anyone have oral or tongue issues from it. Just try to stay positive. Do things that keep u busy and try to keep your mind off of it. Treat yourself to something nice. It will make u feel a little better


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by Frenchies, Aug 04, 2015
You never know what kind if relationship he had with his wife. And his kids wouldn't have it. He doesn't open mouth kiss his kids. I just don't trust or believe very many people anymore. At least he met with u. The guy I was with wouldn't meet with me at all   Told me I was crazy and I was looking for a diagnosis that I wanted to blame him.

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by Angelinaaa, Aug 04, 2015
I know it's not anxiety was just hoping it was. I'm  praying this virus wont get any worse and wont kill me to be honest. My mouth is getting more and more dry :( I keep researching cause I'm afraid I'll find the cause too late. I'm emotionally drained.

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by Frenchies, Aug 05, 2015
This is not hiv. I feel this is some form of virus. That we obtained during exposure to the individuals we were with. Somehow we will eventually figure this out

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by Angelinaaa, Sep 17, 2015
how's everyone doing? I'm loosing a lot of enamel on my bottom teeth and sometimes I bleed a lot from my gums when I floss. I'm coming to terms that this is not HIV. When i look back at my symptoms I'm thinking this is more in the hepatitis family. Maybe all this is caused from my stomach or liver, why else am I or you loosing enamel in our teeth, what else could cause this? doctor called me to tell me I didn't have my immunization for Hep a ans hep b. Any news with all of you/updates? Did you check your liver/stomach function?

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by Thisiscrazy40, Aug 19, 2017
Hello to all. This is now two years later and i have somehow developed the same nightmere you all have gone through or atill might be going through. Im suffering from great depression from all this and would love to speak to amy of you ablut whata going on or wndong results. Please from bottom of my heart, may somebody reach out to me.

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by ralito2, Oct 10, 2017
Hello to all! I'm reading from Bulgaria and I'm also very desperate and don't know what to do. All the symptoms you've described- it is if I would have written it.  Angelinaa, Frenchies, how are you now? This nightmare started after mouth kissing, that was all. How could we be punished so, only because we wanted to kiss someone we liked?!?
Please, write what is going on with you. I can't stop crying. The doctors see that there is some kind if inflamation im my mouth and thorat, but all the tests are all right and they can not tell what is causing it. All my friends and relatives think already that i''m crazy...

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by ralito2, Oct 10, 2017
Ashler wrote that the only thing that come out positive was the hpv 16 after biopsy...:(. So, is it all because of hpv after all?What could we do to fight it?

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by ralito2, Nov 11, 2017
Ashler, Angelinaaa, Frenchies, how are you? What's going on with you? Please, write how are you feeling now! I'm so desperate..., need help, to talk to somebody who is experiencing the same...


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