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EXTREME dry mouth and eyes
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EXTREME dry mouth and eyes

I have had a serious bout of dry mouth and eyes for about 4 months now...so bad it is causing tooth decay. I was tested for Sjogrens but the test they ran( Sjogrens AB) came back negative.  My mouth gets so dry I can't even talk.  I am also having eye problems like light sensitivity, this weird white gooey deposit on my eye and I have had to use eye drops constantly.  Right below my jaw on both sides, I have swollen glands but they do not hurt....any suggestions?  I don't like my Rheumy doctor since we switched insurance...I don't want to ask them or even go back there.  This is becoming a problem though
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Do you have another health condition ? And have your physicians found out why you have swollen glands ?
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Are you on any meds that could cause this ?
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Thank you for your reply...I am a Lupus patient and the meds I am on I have been on for a long time.  I don't think it is medication related. I just know that my tongue is swollen because it keeps sticking to the top of my mouth, and I can't really eat anything hard. It is really strange. Thanks again
Pam
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What some physicians now believe is that autoimmune conditions are the result of intracellular bacteria. These mycoplasmas have the ability to multiply and cause additional symptoms. In my case, I have CFS and I also have symptoms of Sjogren's Syndrome.

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Avatar_f_tn
at the time these issues started up, was something new going on?

I would look for exposure to a component in cleaning products, paint:

such as BUTYL or 2-butoxyethanol

Be sure you are NOT being exposed.
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471161_tn?1317194550
Oh my gosh Pam,  I had my salivary gland swell up and the whole right side of my face was swollen along with my right eye.  I have had dry mouth so bad that I cannot talk at times without stopping and taking a drink of water.  My tongue will stick to the roof of my mouth at times.  I know, GROSS!  Anyway, when my salavary gland swelled up the doc put me on 10 days of anti-biotics and said it should be gone in three days.  it took two rounds of meds and three weeks to go away.  Since then I have white gunk that comes out of my left eye.  The opposide side that was swollen.  I have to use eye drops all the time because my contacts dry out.  I also am getting cavities worse than most people.  I just couldn't believe it when I read your post and you were having the same thing I am.  I don't believe it is exposure to drugs or chemicals, at least not for me.  I am also a Lupus patient as are you Pam.  I don't have an answer but I can say you're not alone sister-friend.
Joni
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Oh and I was tested two months ago for Sjogrens and it came back neg. too.
What do you think that means?  Maybe a pos. neg. at first??  I dunno...
Joni
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422425_tn?1307996590
Hey it has been a long time,,,,,,,how are you?  I just made a appt with my dr to see what is causing this.  I can't talk for more than 5 minutes and my mouth becomes almost hard I guess you would say.  My salivary glands have been swollen for over a year, they said it is because I have to much immuno something.....Just the last few months they have really swollen up, but no pain.  My husband thought at first that I had mumps.  I hope all is well with you, and the hurricane!
Pam
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We are going to have a guest physician join us early next month in the fibro / CFS forum. He has done research not only on fibro & CFS... but autoimmune conditions as well. You are welcome to join us. Keep checking the community for the date.
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471161_tn?1317194550
Thanks for the heads up.  If you think about it please let me know when he will be there.
Joni
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You're welcome ! I will definitely remember to post something here first.

Best,

PlateletGal

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HI, I am very new to this or any forum. I am also new, or perhaps in denial, about all of these medical issues. I have been diagnosed with Fibromyalgia, Sjogrens and nerve damage of some sort.

I relate very well to the dry mouth, can't speak, swollen glands. I also have a very difficult time swallowing and have developed an annoying cough. The meds that the drs want to put me on scare me and I am trying to do this with diet, exercise and vitamins. I would be very interested in the doctor coming to do a forum. Is it Dr. Murphree? I just got his book on CFS and Fibro. We have no decent doctors out in the area where I live, but I do have a rheumatologist. She is about an hour away and difficult to see.

Do you all use anything like a certain type of toothpaste or mouthwash or throat spray when these symptoms get so bad? I'm not having any luck. I teach 44 kids one day a week and it's getting more and more difficult to keep talking for 3 hours.

Any information would be helpful.

Thank you.
MargueriteF
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484098_tn?1259531132
I have been diagnosed with Sjogrens, and I had the dryness in the mouth and eyes and vagina.  I didn't have swelling, but did have burning along the jaw and below a bit.  I looked up the salivary glands on the net and found that the burning pain is my salivary gland.  BIOTENE is a brand name of toothpaste that works a little, they also have a gum and mouthwash.  You can buy it at Target, walmart and K-mart.  Probably walgreens also.  Have you tried to coat your mouth with an oily spearmint type spray?  I would think that would help some.  I wouldn't know where to get it, but maybe a whole foods store would have it.  There is probably spearmint oil in a bottle in GNC or some place like that.  I will look for it and see if I can find anything.  My dryness stopped after about a year.  I only have it a little bit right now.  But, then again, most of my symptoms are getting better all over.  I am on Plaquenil and that has helped immensely, and have switched to a raw food diet and that helps my thirst.  I do have trouble eating brocoli, as it sticks in my mouth and throat.  But If I take tiny bites, that helps.  Look on the net for BIOTENE products and see what they provide.  Also check out Sjogrens dot org website.  They have suggestions.  Good luck to all of you.
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I still think you should consider a chemical exposure for all of these symptoms in addition to whatever else might be the cause ... this is the most probable:  for CFIDS in general, for CFS, FM.  I know you have good definitions for the variations of each of these, however, the chemical that I suspect causes many variations

The proof is the fatigue that evades medical science:  autoimmune hemolytic anemia, per research on what 2-butoxyethanol does ... and I suspect BUTYL in general.

I think there is something doctors are giving new moms during the birth of a baby ... that can cause these issues to show up.

Researchers cannot figure out what causes HELLP Syndrome.
Looks to me exactly like how exposure to BUTYL would look like
http://www.valdezlink.com/pages/hellpsyndrome.htm

They should also ask those in their research programs, "Do you have any short term memory loss?"  MAYBE even the post partem blues ... another aspect of what EGBE exposure will do (Ethylene Glycol MonoBUTYL Ether)

I notice with the newest mom in our family, that she had horrible headaches, FATIGUE, memory loss (that I noticed by being around her a lot then) and now she is expecting another baby and her doctor says she is anemic and gave her an IV drip for iron

I am very concerned for her, and for baby, too, if neither are getting enough oxygen.
And the anemia she has ... I suspect is the anemia not found for the CFIDS, CFS, FM groups.  I think it is more serious even than the cancers that can pop up later.

FIND 'the hard to find ANEMIA'  -  Is it part of CFIDS?
http://www.valdezlink.com/re/helps2.htm

Now 2-butoxyethanol is said to DEFAT the skin ... so that would really take moisture out of one's skin ... or even whole body.  Accutane has a butylated inert ingredient, and I think it can dry out ones skin ... not just on the face, but everywhere else too.  Warnings for the use of this acne medication is very much like that of 2-butoxyethanol.

Too much of any chemical (and meds are also chemicals) can cause a rash, or dryness.  How does a body complain?
http://www.valdezlink.com/pages/howcomplain.htm

An annoying cough?  What have you been doing differently than before the cough started?

I strongly urge you to listen to your body ... and especially look out for 'flu symptoms' the 'sniffles' ... diarrhea ... as these are reaction to BUYTL .. . not to a virus
http://www.valdezlink.com/re/avoidpesticides.htm
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The physician who will be joining us in early October is Garth Nicholson, Ph.D. He is the founder of The Institute for Molecular Medicine and you can find his website online and read some of his research. What Dr. Nicholson and other physicians are discovering is the role that pathogens (mycoplasmas, etc) are playing in people with autoimmune diseases and syndromes (including fibro & CFS).  My mother has Sjogren's syndrome and when I looked at the possible cause for her illness, I discovered that researchers suspected a viral / bacterial link. Well this was the same suspected trigger or cause with my illness (CFS) !  In addition to having Chronic Fatigue Syndrome, I also have a very high ANA titer, which indicates that I have some autoimmune issues and may have an autoimmune disease too. I could have Sjogren's, but I'm confident that the treatment that I'm doing is targeting not only my CFS, but my autoimmune problem as well.



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Here's a link to MedHelp's Health Pages for the Fibro / CFS forum (I'm the CL there). Some of the treatment plans that I posted for CFS are also treating various autoimmune conditions. I posted the links to these treatments and also links to success stories in case anyone is interested :


http://www.medhelp.org/health_pages/Fibromyalgia/Treatments-for-Chronic-Fatigue-Syndrome/show/453?cid=39

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175734_tn?1225138040
Sounds alot like Lymes disease...
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I don't have lyme disease, but the treatment that I'm currently doing is basically the same treatment that lyme patients are on... it kills the pathogens that  apparently are responsible for my immune dysfunction and autoimmune problems :


"We found that about one half of patients with Gulf War Illness and two third of patients with CFS/ME and FMS were positive for mycoplasmal infections in their blood."

"Recent reports and publications indicate that in addition to mycoplasmal infections, CFS/ME and FMS patients have other chronic infections caused by other intracellular bacteria and viruses."

"Infections have been found in a variety of Autoimmune Diseases, particularly in Rheumatic Diseases, such as Rheumatoid Arthritis, Scleroderma, and other rheumatic disorders. We and others have gathered substantial evidence that chronic bacterial and viral infections are commonly associated with Rheumatic Diseases, and many of these patients respond to antibiotic therapy."

~Dr. Garth Nicholson (The Institute for Molecular Medicine)



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Hi Cudagirl!

I would strongly suggest that you push your doctor to do a lip biopsy.  Even though you were sero-negative for the Sjogrens AB and none of these antibodies were detected in your blood serum which happens in about 25 % of patients who really do have Sjogrens syndrome but they don't have measurable sjogren's Ab's in their blood.  A lip biopsy may show changes that are consistant with Sjogren's and confirm the diagnosis.  Once this Dx is estabilished usually the rheumatologist would treat with steriods like methylprednisone and then you could hopefully get some good relief of your symptoms.  Good luck to you.

Dawn
  
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Avatar_f_tn
The reason an infection is suspected, many times, might be because it isn't recognized as an anemia sign

LEUKEMOID REACTION
Classically, in Immune Mediated Hemolytic Anemia the stimulation of the bone marrow is so strong that even the white blood cells lines (which have very little to do with this disease but which also are born and incubate in the bone marrow along side the red blood cells) are stimulated. This leads to white blood cell counts that are spectacularly high.
      http://www.valdezlink.com/re/highwbc.htm

A cause of eyes burning and hurting may actually be a sign of exposure to BUTYL in many products, even home cleaning products, paint, etc.  Vapors in one's eyse (either direct exposure or 'second hand exposure')

Ask the lab tech to LOOK at the RED BLOOD CELLS

http://www.valdezlink.com/re/medhelp/hippain.htm#things
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I couldn't get that link to come up.  I'll keep trying.
I am wondering if an elevated sed rate could also be caused by the mycoplasmic infections you mentioned? That is my recurring problem. I am sero negative for both the Sojgrens and RA and test positive for fibro.

But prior to all of this onset, I had chronic sinus and bladder infections.

Thanks for the info.

MargueriteF
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hi i am new here .i was just told i have lupus  does any one knows if it can affect the heart?
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Could the problem be your brand of  Contacts  solution?

I don't use contacts, but I'm sure there are different  brands.  
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And  I meant  to  add  that  since I was about  3 or 4, I remember  occasionally waking up  with eyelids stuck together.   Am  having another bout of that at 72.   Used some Systane just now.   I  have  antibodies,  not  high,  and  recently  there  was  some experimental fiddling with my fine-with-me dosage of T4.  It caused some temporary swelling of my thyroid.  I'm almost back to normal dosage and going to try another Primary Care person who'll know there are many possible causes of a slightly  low  TSH besides overdoses.   A Dr. Lowe online  mentions  a  self-limiting  disorder  where, if I understand correctly, inadequate medication and inflammation or infection can cause thyroid  follicles to rupture,  flooding the bloodstream with  the frees.  He didn't say how long  "self-limiting" means.  I  delaying about  seeing an endo, really don't want to go through a lot of testing, was doing fine until  for Medicare I  had to look for  a  B.C. Network  PC.   Anyone ever heard of this?   It's  just  one of many possibilities about inaccuracy of  TSH, which can show other things wrong.  

Can we always trust a lab to be careful enough?  In a TV crime case, they were saying a  lab  mixed  up  two  blood samples.  And  what  if  you  have  a  sociopathic stalker who can convince almost anyone of anything, maybe convince them  that he's a doctor, or somehow knows you and that you are overdosing?  Example,  one time  TSH  didn't  change a bit  after  3 mo of a lowered dosage,  and,  not until after I'd mentioned  T4 was within Range  did it  go way  up  on the next  report from the same lab.  Of course I no longer use  those  people.  The question may be slightly entertaining, a little break from our  so-serious worries.   I  do  wonder  now,  exactly  how  do  they  do  that,  get a  TSH  number, or  Frees  number,  from  a vial of blood?   How much room for error is there?    
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Yes ! I highly recommend you google, "Dr. Garth Nicholson" and you will see his website pop up immediately. He is the founder of The Institute for Molecular Medicine and has done research on mycoplasmas and other stealth pathogens... and their role in autoimmune diseases and other conditions.

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Great interesting reading ,your posts are so informative ,thank you, can you get Hives as one of the symptoms of any of the Maladies I have read in your posts.?
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Avatar_n_tn
I also have these symptoms,my teeth keep decaying,i also have a host of other symptoms,including a diagnosis for b.f.s,not to mention vision probs, extreme eye floaters,loss of hearing,night sweats,gunk coming out under my fingernails,back and neck problems,major stomach rumbles and severe pain,mild to severe cramps in feet and legs,red pimples on arm and legs, and sclerosis in the webbing of toes,lines in toe and fingernails,also wheezing and swollen nasal cavities........i ran around like a chook with its head cut off for yrs looking for answers,only to come up empty every time.......Until !!....... I discovered what it is that is causing all this havoc upon my health,as i was formally a very fit and healthy individual...google carnicon..may God guide you in all truth. i have more info available on my youtube site
my channnel is ..stevecvil1..aka..inforwars brisbane.
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Avatar_m_tn
I have a dry tongue problem for 18 months now. Problem came out of the blue as I don't take any medications, etc. I used to be a healthy man and I am in my mid 30's.

The problem started about 4 months after a sexual exposure (all details are in my profile) and I thought the dry mouth problem was related to HIV. However I have had 6 HIV tests in the last 20 months post exposure that say I am negative (tests include also a PCR RNA - direct virus detection).

My CD4 and CD8 counts are normal.

I took photos of my tongue they can be seen here:

http://www.medhelp.org/user_photos/list/2076759?personal_page_id=2596707

I am pretty sure the white coated tongue is due drynness. I have been to an endocrinologist some weeks ago and I will have results to several tests I took in a couple of weeks.

Thanks.
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