Chronic symptoms undiagnosed

[Margot49]

I posted in another forum also. Posted here some time back but never got any replies.  Still having chronic and worsening dry mouth and throat problems, now with some ear pain on occasion.  Tissue of tongue, palate, mouth and throat don't feel right and often feel like I have either no saliva or like I have a mouth and throat full of glue.  Very stressful.  I think I've had about every test done and some twice or more.  Started having night sweats (way past menopause) almost a year ago.  The only prescription meds I take now is Xanax, very low dose, as needed cause this causes me so much stress.  I often feel some nausea also.  Neurologist I recently saw to review my MRI was asking about these problems and he ordered a bunch of blood work the other docs had not.  Came back at high levels for Herpes and EBV.  I have no idea why. I do get cold sores and had Mono in high school and a relapse in my 20's. This doc suggested I try taking Valtrix for a few weeks to see if that helps.  I have no idea why that would help either and I'm always afraid to take new meds due to problems I've had in the past.
Any ideas?  This is horrible and I mean horrible.  I am almost confined to my home due to not feeling well most of the time (the "I just don't feel good" syndrome) and the dry mouth and throat and a feeling like there is something like mucus stuck in my throat.  

[Margot49]

Thanks for your response. I yet again see an ENT doctor today.  I am way past menopause.  I have used all the biotene products, Oasis, GC gel and nothing gives me relief.  I having a feeling of fullness in my left ear with occasional pain. MRI didn't show anything.  I would think if it's hormonal, one side would not be worse then the other.  And, I just don't *feel well* most of the time.  No biopsies have been done for quite some time and I may ask the ENT doc about that again today although I really  hate going under anesthetic again.  And, I often have  a queezy stomach.  Add to that the *feeling* of mucus stuck in my throat.  Now, this problem is chronic and seems to be affecting my throat more and not just my mouth.  I need a gum graft done and there is just no way I can see getting through that procedure and recovery.  It's horrible and I am almost a recluse due to this.  The tissue of my mouth and tongue just don't feel right. Docs I've seen say they have just never seen this before or in someone that it lasted so long.

[OHNS2010]

Hi,

You have got all the possible tests done to find out the cause for your problems, but in vain. One thing you need to be happy about is, you do not have any major problems. Secondly, as you have mentioned in your first post that you are going through menopause. Most of your symptoms are related to this post menopausal phase where in there is fluctuation of hormones.  The body responds to the rapidly fluctuating and dropping levels of natural hormones. You do not have any other symptoms which indicate any major diseases/cancer. I would advice you to consult a gynecologist as well take symptomatic medicines such as Prevident and Biotene to moisten your mouth. Any more doubts you are welcome.

[Margot49]

Londres, I have had about every test done in the past 2 1/2+ years and my symptoms are worse and now chronic.  Had biopsies done of throat and tongue not long after this first started with my first ENT.  I've had CT scans done and probably of my salivary glands (had them of my head and neck, I know, plus MRI's of my head and neck recently), nothing is showing up.  I see the latest ENT next week again. He is the one that ordered the latest MRI's and suggested a neurologist who did the blood work and suggested the Valtrex.  It's a nightmare.  I am not doing well today.  Mouth and throat dry, feeling of lump/mucus in my throat, fullness in left ear, tongue and mouth tissue never feel *right*.  Feel generally unwell and this about confines me to my home.  I may see if this latest ENT will consider doing biopsies.  I think they all basically think I'm nuts. Yes, I saw a psychiatrist who does not think any of this is phsycosomatic (sp?) but he suggested I see a counselor because I am so stressed out over this.  

[Londres70]

This just indicates exposure not active disease.  You were exposed and formed antibodies.  I don't know how much or even if Valtrex will be of any help.  This doesn't sound viral related to me, possibly fungal.  

Did you have a Salivary Gland Scan done?  

Any biopsies or scrapings done from your mouth, tongue and/or throat?  

[Margot49]

After your question, was looking at my lab results and I'm not sure what they mean.  CMV IgG antibody shows>5.00  says it does not differentiate between active or past infection

EBV VCA AB (IgG) >5   according to the references below indicates Positive.
HSV 1GG AB  >5  indicates Positive on the chart below
HSV 2 IGG AB <.90  indicates negative on the chart

There were other tests also but I guess those were within the normal ranges.

I don't know what this stuff means and still can't get myself to start these meds.  :-(

[Margot49]

I have absolutely no idea what that is or what it is supposed to do but I may certainly try it.
thanks

[Margot49]

Oh yes. Was referred to Stanford Rheumatology some time ago and they did testing, which was negative.  One of the ENT docs here decided to do a salivary gland biopsy which was negative.  
Some of what I was reading on EBV says it can possibly cause nasopharyngial (sp?) cancer.  
Just got up and I am miserable already.  Most of the problem of the feeling of a lump and/or mucus is on the left side.  They scope me and say they don't see anything.
thanks

[hava]

This pranayam will help to ease the symptoms gradually. Do it daily,twice a day and with your eyes closed.Come back to report your progress after 3 weeks, and get further guidance.The first benefit will be less stress, and then other benefits will follow gradually.
Build up your timing gradually.If you feel tired or dizzy, stop and resume after one minute.
Anulom Vilom pranayam –
Close your right nostril with thumb and deep breath-in through left nostril  
then – close left nostril with two fingers and breath-out through right nostril  
then -keeping the left nostril closed  deep breath-in through right nostril
then - close your right nostril with thumb and breath-out through left nostril.
This is one cycle of anulom vilom.
Repeat this cycle for 15 to 30  minutes twice a day.
Children under 15 years – do 5 to 10 minutes twice a day.
You can do this before breakfast/lunch/dinner or before bedtime or in bed.Remember to take deep long breaths into the lungs.You can do this while sitting on floor or chair or lying in bed.

[Londres70]

Have you had  Sjogren's Syndrome ruled out?  

Were the "high levels" for Herpes and EBV for active disease or just antibodies?  Your symptoms do not correlate with EBV or Herpes as being the problem.  I don't think the Valtrex will be much help.