New Atmosphere, New Vision: Gibson and Whittemore Kick Off Invest in ME Conference 2016
Mark Berry reports on Dr. Gibson's introduction and Dr. Whittemore's keynote speech, at the 11th Invest in ME International ME Conference in London.
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Dry Mouth

Discussion in 'General Symptoms' started by Lotus97, Jun 6, 2014.

  1. Lotus97

    Lotus97 Senior Member

    United States
    I've had dry mouth for most of my illness. I suppose most people would point the finger at the prescription medication I'm taking, but I'm wondering if it could be something else like sjogren's syndrome. I just got tested for Lyme and it came back negative although I don't want to completely rule it out since testing can be inaccurate. The doctor also thinks I might have bartonella because of my other symptoms. I do wonder about sjogren's syndrome. I'm guessing it's very rare, but it would still be nice to rule that out.
  2. manna

    manna Senior Member

    as soon as i saw the title i thought id look to see if the poster was on meds, sorry. i wouldn't have posted but seeing as you've mentioned it. that would be my bet. could be somethin else though.
    Lotus97 likes this.
  3. minkeygirl

    minkeygirl But I Look So Good.

    Left Coast
    You can get tested for Sjogrens. I tested positive one time and negative another. I have none if the symptoms which is more than just dry mouth. I think your tear ducts are dry, more stuff I can't think if right now.

    Sometimes things are just what they are.
    Lotus97 likes this.
  4. Helen

    Helen Senior Member

    Hi Lotus, I have Lyme; neuroborreliosis, and the 7th cranial nerve is affected on both sides of the face. It means in my case that I have dry mouth and dry eyes due to that- among other symptoms from the Nervus Facialis. Parasympathetic branches from the nerve affects making saliva and tears. Maybe a Google translation of this text could be helpful (it tells what I have written). FWIW. Best, Helen
    JAH, Hanna and Lotus97 like this.
  5. DeGenesis

    DeGenesis Senior Member

    Dry eyes is absolutely brutal. My optometrist was telling me that some researches did a survey and people would chop 10 years off their life rather than live with dry eyes. I got Lipiflow which was helpful (probably because my eyes don't close fully).
  6. alex3619

    alex3619 Senior Member

    Logan, Queensland, Australia
    Dry mouth and even dry eyes is very common in ME. I have dry mouth all the time, and very occasionally dry eyes. I was negative on a test for Sjogrens. Sometimes my mouth is so dry I cannot speak. Its also the case I need either wet food (e.g. soup) or a drink in order to eat.
    sb4, Aileen and SpecialK82 like this.
  7. SpecialK82

    SpecialK82 Ohio, USA

    Ohio, USA
    I have dry mouth, nose and eyes pretty severely but no Sjogrens.....
    sb4 likes this.
  8. JAH

    JAH Senior Member

    San Jose
    I also have dry mouth that has been severe at times. I recently had an appointment with Dr. Montoya's PA, and she told me that they have patients that they think have Sjogrens, even if they test negative for it. A sort of sub acute case. I had never heard this before, we didn't get into it deeply, but interesting.
  9. Rlman

    Rlman Senior Member

    Toronto, Canada
    I also have a constantly dry mouth. It get worse when eat salty food. It was once extremely dry, but a 3 week juice fast made it much better (though probably weakened my adrenals). I also urinate more than normal, which may contribute to my dehydration and dry mouth. Would love to know the cause of this dry mouth...
  10. perchance dreamer

    perchance dreamer Senior Member

    I got rid of dry eyes when I started drinking a lot more water and added good sea salt to it. I use Celtic. I told a friend this, and it helped her, too. The formula is 1/4 tsp per quart.

    I no longer use this much salt, but I still always add some to my drinking water. Some people are salt sensitive, so this wouldn't do for them.

    Genteal Severe are the best eyedrops I've found. I keep them in the fridge, and they feel wonderful. AZ is less expensive than our local Walgreen's for these drops: severe dry eye gel
  11. ashler



    i didn't post here for a while. i am a male, 37 years old now.

    i have not been (yet) diagnosed with SS (all blood tests negative) but next week I am going for a lip biopsy as a gammagraphy I had 2 weeks ago showed my salivary glands are not functioning properly.

    i have this dry tongue for the past 2 years. Been to 20 to 40 doctors and they don't know what it is. It came out of the blue in June 2012, but I relate it to a sexual encounter I had with a girl in February of that year. Basically my tongue is dry, a white film covers it, saliva is very thick and sticky, and tongue is very sore sometimes. Teeth marks in the tongue border area also present and tongue seems to be bigger than it should be (macroglossia). I am not a smoker.

    as the person who opened this topic I am concerned about HIV-SGD or DILS (a syndrome that mimics SS but its seeing only in HIV+ people) however I had 7 HIV negative tests in the past two years (including an HIV-1 PCR RNA)

    my CD4/CD8 ratio is above 2, although my CD4 could be better (515 the last time I checked)

    a full detail of my case is documented here
    a detailed list of virology tests i have taken is here

    any comments of persons (specially males under/around 40) with similar symptoms will be appreciated.
    anyone with similar, chronic symptoms?
    anyone has here been diagnosed with SS despite all blood tests (ANA, etc.) being negative?

    thanks for reading.

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