randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
i looked up the symptoms of this and i have all of them.
or again is it lyme???
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
As I recall, DocDave has it and my fibro doctor said I may have it but it couldn't be confirmed without a biopsy. I think it was a biopsy of my lip but I don't remember for sure. I said no. He said at the least I have sicca.
I have several family members with similar symptoms. Mine got so much better after the first year of treatment. Doxy really helped a lot of symptoms in the first year.
My eyes used to itch constantly and be very irritated all the time. I do have some salivary gland problems still but don't know if it's related to sicca or sjogren's. None of the doctors I've seen seem to be able to tell me what is causing the lumps in my neck.
If you have it, you will have more cavities because it dries out the mouth.
Many with fibro have sjogren's and probably lyme induced fibro or some other infection has induced fibro.
Autoimmune problems seem very common with lyme.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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karenl
Frequent Contributor (1K+ posts)
Member # 17753
posted
I have it and think it is from bartonella. Bartonella also live in blood vessels.
Posts: 1834 | From US | Registered: Oct 2008
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bettyg
Unregistered
posted
i have it and feel it is ALL from the many meds; all with side effects of DRY MOUTH.
dental asst. commented on it the last 2 yrs. for dental cleaning...
i'm bone dry all night and then with my cpap blowing into me all night long; uffda
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posted
Dear randibear, I have a feeling I may have Sjogren's. My teeth are going bad, and have been for several years now. When I wake up, there are times I have what I refer to as "Velcro Tongue". Your tongue literally sticks to the roof of your mouth it is so dry. As TerryK posted, I also have extremely dry eyes that tend to burn unmercifully. There are times I have to take a washcloth and put cold water on it and stick it in my eye to make it stop.
posted
I have it. I can find no reference to lyme causing it. i find evidence for bartonella and chlamydia and mycoplasma causing it. I also have found evidence that syphillis and tuberculosis can cause it. Whatever it is, it is an infection. I think it is a cranial nerve issue. Saliva is controlled by the cranial nerves. Mine go better with flaygl.
Posts: 433 | From new york | Registered: Dec 2004
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luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
It is an auto-immune disorder.
Randibear, I keep referring you to www.roadback.org but you never reply and I haven't seen you on their chatboard. Have you checked them out?
They believe in infectious causes to auto-immune disorders.
You really need to go there and read the research and chat on that board. Lots of people with all your symptoms there and many with lyme.
Susan
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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posted
When I told my neuro last week that my eyes were so dry I couldn't stand it, he wrote me out a script for blood work. He said he was testing me for Sjorens.
My teeth are good though, and I know my dry mouth is from the meds, the biaxin mouth is so horrible tha I wonder if other people can smell it because I taste it so strongly.......
Shalome
Posts: 893 | From Florida | Registered: Dec 2008
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Bugg
Frequent Contributor (1K+ posts)
Member # 8095
posted
I HAD this during lyme...my eyes were soooooooo dry and I couldn't make any tears....could not, of course, wear contacts...
I was able to rid myself from it through IM magnesium (also did some IVS of mag) and upping my levels of Vitamin D.....My opthamologist who's been a doctor for decades was amazed.....
mag helps with detox, inflammation, and ATP production....Vitamin D helps modulate the immune system and greatly helps with inflammation (also assists with glutathione)....
I'm now doing more detox using NAC to raise glutathione.(other things as well)...there's lots of info on the web about eye problems being related to low glutathione.....
You won't have proper ATP production without adequate levels of glutathione...
luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
Bugg,
I don't have sjogerns, but I do have low levels of glutathione and am on all you say. You are completely correct and I am fully functional thanks to this kind of medical care.
Susan
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
i'm sorry i don't recall that post. i looked at their site and it has lot of valuable information.
think i'll go over there for awhile.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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D Bergy
Frequent Contributor (1K+ posts)
Member # 9984
posted
I have seen a few autoimmune diseases reported here that come along after Lyme Disease. Crohn's being one of them I noticed right away, as I have this disease, but not Lyme.
Whether it is in the medical books as a possibility or not, I can see perfectly well why this can happen.
Lyme reduces the immune systems ability to kill bacteria or cause it to act in a dysfunctional way.
This immune dysfunction is the beginning of most autoimmune diseases. In this case the immune dysfunction is caused by Lyme. In my case the cause is unknown.
The same treatment I use for Crohn's can address the immune dysfunction for other autoimmune diseases, whether Lyme induced or not.
Low Dose Naltrexone corrects the immune system dysfunction and allows the immune system to correct the problem. This also will help with Lyme Disease at the same time.
posted
Dear randibear, I know that Celiac Disease is directly linked to Sjogren's. I have that. This may be the cause of my situation. Having allergies adds to it. Like Bugg, wearing contacts is problematic for me. No matter how many eye drops I put in, my eyes are still too dried out and the contacts stick!
posted
I didn't know it was linked to celiac disease. I do have that too. Explains a few things!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I was told I had this before the lyme and other TBD were diagnosed. But, most doctors think it's just dry eyes.
Lyme can cause Sjogren's syndrome - but not necessarily all the time. Still, it's a syndrome, just like fibromyalgia - a collection of symptoms. It also can be much more serious than just dry eyes and mouth. I think, too often, dry eyes are just lumped into this category.
Adrenal dysfunction also causes dry eyes. And lyme causes adrenal dysfunction, and on and on . . . --
Check all your meds, first, though. Some cause dry eye and dry mouth. Antidepressants, especially, cause dry mouth/eye. This can also lead to gum and dental disease as saliva is really important to keep infection down.
--
There are many past threads here on Sjogren's - you can check out previous discussions with the search feature.
Be sure to keep your eyes lubricated, though, with some preservative-free "liquid" tear sort of drops. It is important not to let the eyes dry out as damage can come from that.
And remember to BLINK. I try so hard to pay attention and know that if I blink, I may be too tired to open my eyes again - or get dizzy and loose my place (like, in my chair :-) -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Dear Tutu, Yes, Celiac has a direct link to Sjogren's. Go to http://www.celiac.com/articles/105/1/Sjogrens-Syndrome-and-Celiac-Disease/Page1.html and check it out. It is not surprising they are related considering both are autoimmune disorders. The first time I ever read about Sjogren's was on a Celiac Disease site. I can put eye drops in my eyes and blink a million times a day, but it does not do any better than when I do nothing.
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Jin,
Thanks for the link. I have both celiac and sjogren's (but the Sjogren's, I think is just the umbrella dry eye thing).
Celiac can be, but is not necessarily autoimmune, though. It can be brought on by infection. Sprue (as in Celiac-Sprue) was the first infection that came to light, but other infections can cause this, too.
Genetics can also play a part. I have the genes connected to this so there can be many considerations. So, a person can be born with celiac.
As for autoimmune, often it's the immune system working very hard to find an infection that has developed a hiding strategy (as a "stealth" infection) - so it's not really an autoimmune problem so much as an immune system that smart enough to know there really is something there to fight but it can't quite find it.
Many rheumatologists would just as soon we go away with a Sjogren's umbrella dx as with a fibromyalgia dx. For anyone with lyme, still keeping the focus on treating the underlying problems can see the symptoms improve. In the meantime, of course, keep the eyes lubricated and rested. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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