susank
Frequent Contributor (1K+ posts)
Member # 22150
posted
If I spelled that correctly. I have severe dry eyes (and mouth) and severe photosensitivity. I go to optho. Use Restatis and other drops. Have had tear ducts cauterized. Now trying bandage contact lenses. I can produce tears - like when I am crying - like now. Apparently I don't produce the oils - from the glands. Had another Sjogren's blood test last week - awaiting results - previously negative. Could/does LD effect Meibomian glands?
-------------------- Pos.Bb culture 2012 Labcorp - no bands ever Igenex - Neg. 4 times With overall bands: IGM 18,28,41,66 IND: 23-25,34,39 IGG 41,58 IND: 39 Bart H IGG 40 Posts: 1613 | From Texas | Registered: Aug 2009
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2roads
Frequent Contributor (1K+ posts)
Member # 4409
posted
Susan,
Would you mind telling me how they tested for this?
Did they add some kind of dye to your eyes?
I do believe lyme can affect this.
I question this issue regarding my son.
Hopefully others will come along and inform us both-
2roads
Posts: 2214 | From West Chester, PA | Registered: Aug 2003
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susank
Frequent Contributor (1K+ posts)
Member # 22150
posted
Assume you are asking about testing the glands. If I recall correctly the doctor uses for example a Q-tip and presses on the glands in the lids - seems to me the lower lids - to see if/how much oil is expressed. Also to check the quality of the oil. Again - whatever hit me hard three years ago started with severe sensitivity to light (eyes). (I think that is photophobia not photosensitity as I typed above). It was months later that I was Dx'ed with dry eyes. One can have sensitivity to light with dry eyes. But I could swear my eyes were sensitive to light before I had any inkling my eyes were dry. Curious what others have to report. My eyes are so bad that I have to wear tinted jockey goggles when I go outside - most days two pair. I have clear jockey goggles for inside the house when A/C is on etc. (goggles like the jockeys wear in horse races).
-------------------- Pos.Bb culture 2012 Labcorp - no bands ever Igenex - Neg. 4 times With overall bands: IGM 18,28,41,66 IND: 23-25,34,39 IGG 41,58 IND: 39 Bart H IGG 40 Posts: 1613 | From Texas | Registered: Aug 2009
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susank
Frequent Contributor (1K+ posts)
Member # 22150
posted
Further - the doctor is an optho - dry eye specialist. No one has any idea what is wrong with me - all the weird symptoms/sensitivities. It is either CEBV, Sjogren's and/or Lyme Disease. I have to do the research myself and beg doctors to run the tests.
-------------------- Pos.Bb culture 2012 Labcorp - no bands ever Igenex - Neg. 4 times With overall bands: IGM 18,28,41,66 IND: 23-25,34,39 IGG 41,58 IND: 39 Bart H IGG 40 Posts: 1613 | From Texas | Registered: Aug 2009
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I have this problem as well. Even though my eyes bother me everyday it doesn't seem like they bother me as much as your eyes bother you.
My eyes burn 90% of my awake time. When they are not burning me, I wonder why so I can try to recreate it, but I can't think of anything different.
I was tested for the Sjourerns as well and it was negetive. I was also tested for viral infections, but no one has told me if it was positive or negetive even though I have called the eye specialist several times.
I wish I could tell you the "fix" but I don't know one. I just keep eye drops all the time and I use the Restasis as well.
Please search on eye issues, Tincup posted recently on Ocular Manifestations of Autoimmune Disease. Looks like the web address is: www.aafp.org/afp
Shalome
Posts: 893 | From Florida | Registered: Dec 2008
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
When I had undiagnosed lyme, babesiosis, and bartonella I also suffered from dry eye and dry mouth.
The eye doctor wanted to plug up my eye drains to help with the dry eye. The dentist had to give me special mouth wash for the dry mouth, and I had to go to bed with a sugar-free hard candy in my mouth. That's because if your tongue is sticking to the roof of your mouth and you feel like you are dying of thirst in a desert, it is impossible to go to sleep.
I carried water with me wherever I went.
It also gave me horrible bad breath.
All of this went away once I got GOOD lyme treatment. It didn't go away for the 2 years I was on monotherapy. It didn't go away until I got to a doc who used the Burrascano protocol.
All of my symptoms went away. No more dry eye or dry mouth. It is wonderful. !!!
It's been over 4 years now, praise God.
Posts: 9931 | From Maryland | Registered: Dec 2007
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What is plaquenil for? Is it helping with any of your other symptoms?
I might ask to be humored as well!!
Thanks, Shalome
Posts: 893 | From Florida | Registered: Dec 2008
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susank
Frequent Contributor (1K+ posts)
Member # 22150
posted
Coming back to this older topic since for some unknown reason my dry eyes/mouth worse after IVIG. One reads about TBD and dry eyes. I have found nothing specific in regards to the glands ie lacrimal and meibomian. I can cry emotional tears. My M glands appear to be functioning at very low level - think also perhaps the oils are cloggy or something - cannot remember. Anyone know about M glands and TBD? I still test neg for Sjogrens - all related tests except lip biopsy (not done). My WB hints strongly to LD/Bart. Was going to start Abx, but got sidetracked with recent Dx of CVID and started immediately on IVIG. Too afraid/fragile to do IVIG/Abx at same time. Plus I still have my doubts about possibly having LD/Bart. Something triggered something. Combined with CVID I either have Sjogren's, LD/Bart, EBV/CFS, Fibro or Dysautonomia. Thoughts/experiences please!!! The million dollar question - why my positive WB bands if not LD? What else could cause those bands to appear? Thanks so much.
-------------------- Pos.Bb culture 2012 Labcorp - no bands ever Igenex - Neg. 4 times With overall bands: IGM 18,28,41,66 IND: 23-25,34,39 IGG 41,58 IND: 39 Bart H IGG 40 Posts: 1613 | From Texas | Registered: Aug 2009
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
Before diagnoses I went to the doctor several times because of extremely dry eyes. They hurt all the time and were so blood shot it looked like I had pink eye. I had to wear sun glasses in the house. Someone told me to try hyaluronic acid and it works. Even before my diagnosis it was helping me feel more comfortable. Since treating I hardly notice it.
You buy it at the health food store. Get the more expensive type, not that which is made from chicken sternum or rooster comb.
HA is collagen. The bacteria live in your collagen and deplete it. Your eyes have a lot of collagen and sometimes when you have eye surgery they inject HA into the eyes to replace the collagen lost during surgery. Collagen is also in your skin and joints.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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susank
Frequent Contributor (1K+ posts)
Member # 22150
posted
Tks. That would be oral HA not drops? That reminds me - one of the drops I was using I think has/had HA in them - "Blink"? - but cannot get anymore?
-------------------- Pos.Bb culture 2012 Labcorp - no bands ever Igenex - Neg. 4 times With overall bands: IGM 18,28,41,66 IND: 23-25,34,39 IGG 41,58 IND: 39 Bart H IGG 40 Posts: 1613 | From Texas | Registered: Aug 2009
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17hens
Frequent Contributor (1K+ posts)
Member # 23747
posted
Dry eye, red eyes, burning, feeling like something is stuck in your eye, if any of this sounds like you, maybe my experience will help?
I've had eye issues for 5+ years. I'll give all the boring details in case one of them is a clue for you...
Now I know I've had some version of lyme & co. 5+ years and I wonder if my eye problems were related all along. My left eye has hurt me for 5+ years too.
Before I sought treatment the pain came once a month I'd say for a few days at a time. Within a year or two it developed into an almost constant pain but worse some days than others.
My left eye felt like it was scratched, or something was stuck in it and everytime I blinked it was painful. The eye would throb, especially at night. I had red eyes almost all the time and whenever I was in any wind (from an open car window or even going for a walk) my eyes would burn and water and get really bad again.
My eye doctor did the yellow drops at a regular exam and told me something was wrong with my retina so I made an appt w/ a retina specialist.
The retina specialist looked at my eye and said, "nope, this is on your cornea" and called in the cornea specialist. I've always wondered why my eye doc, who is very good, thought it was the retina.
The cornea specialist said I had a viral infection in my cornea which could come and go at any time in my life. He said it looked like I had 3 small volcanoes on my eye. No wonder I felt like something was stuck in my eye and everytime I blinked I thought I was dying.
He treated me with an ocular steroid, Zylet. I think he started me on 4 drops during the day and over some months, weaned me onto Restasis and then weaned me off everything. It all took about 1.5 or 2 years. Although it was much, much improved, I never felt like it was fully gone.
So fast forward to my tick bite when I became very ill. My eye would feel terrible for a few days every month (I realize now it was around my period when all my symptoms became intense and a truck hit me) and I would sneak a zylet drop (because I thought I was gonna die) and in a few days it would be better. Pain, scratching, burning, dry, red.
Since I started abx lyme treatment, it's bad for a day or two around my period until recently, and i found a few drops of restasis could make it go away.
Also, the two times I've been on Rifampin & Zith, which has been what's really, really pounded my Bart, my eye doesn't bother me at all. I forgot I had an eye problem until I read this post. (yeah!)
And the two times I've been on Cipro, which gave my poor fogged brain a beating, my eye pain did not let up for a day. Horrible.
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