Eyes: EBMD / Map Dot Fingerprint Dystrophy / Corneal dystrophy

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BabsBunny
Veteran Member


Date Joined Mar 2017
Total Posts : 563
   Posted 10/31/2017 11:55 AM (GMT -6)   
After my super dry eyes this week and a corneal abrasion, my optometrist looked at my eyes (with that characteristic "hmmmm....") and said I should see a specialist to look into Map Dot Fingerprint Dystrophy, or Epithelial Basement Membrane Dystrophy (EBMD). Basically, my cornea looks kind of messed up.

I've always had eye doctors checking everything because my near-sightedness is pretty bad and I've always had a weird shaped optic nerve or retina or something (I don't even remember what she said, it was many years ago) and they keep an eye out (no pun intended) for glaucoma. And I've never had dry eyes. So this is a recent development.

Of course, I blame everything on Lyme/Babs/Bart.

Curious if anyone else has this issue, if you've heard of the connection between TBD and corneal dystrophy, if it healed after tx, etc etc.

Also, I'm living on positive thoughts, so if anyone can (even lie to me and) tell me I'll be fine and not go blind, I'd appreciate it.

Vision's no worse than usual, just really dry and thus itchy (usually when I have allergies, my eyes water. This dryness and itch is like nothing I've experienced before). I also happen to be experiencing a big reaction/herx/bad week in my Lyme tx, it's the worst I've felt in a long time. So I think it's all connected.
Lyme, Babesia, Bartonella. Symptoms began 5/2016, didn't start treatment until 9/2016. Slow but steady recovery.

*twitch twitch*

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33821
   Posted 10/31/2017 1:05 PM (GMT -6)   
Babs - is the EBMD - something separate - or is it from the corneal abrasion (because of the dry eyes)?

Will keeping your eyes lubricated stop this from going any further?

You mentioned Optometrist. Maybe you should see an Opthamlogist for this?


Try not to worry - I know it's hard - we keep getting 'hit' with lyme, don't we?

With 3 years treating...I only want good news now.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Post Edited (Girlie) : 10/31/2017 12:10:11 PM (GMT-6)


BabsBunny
Veteran Member


Date Joined Mar 2017
Total Posts : 563
   Posted 10/31/2017 2:18 PM (GMT -6)   
I think the corneal abrasion happened because my eyes are dry and I keep waking up in the middle of the night rubbing my eyes.

Whether EBMD is a factor in that, come to think of it, I’m not sure.

She said she would refer me to a specialist. But first, I want to treat with eye drops that will reduce inflammation. As soon as she said inflammation, I was like, that’s totally Lyme. So I will try these drops and follow up in a month. If I still have problems, if she still sees these suspect spots or whatever on my eye, I will see a specialist. (I originally wanted to find an opthamologist but everyone I went to on my insurance list said they don’t take my insurance!!)

I also haven’t talked to my LLMD since all this happened, so I’m going to make an appt with him and see if he had any ideas.

Basically, I want to know if I should spend money on a specialist and possibly get treatments, or if this is just a lyme thing that will resolve when Lyme and Co are treated.
Lyme, Babesia, Bartonella. Symptoms began 5/2016, didn't start treatment until 9/2016. Slow but steady recovery.

*twitch twitch*

BabsBunny
Veteran Member


Date Joined Mar 2017
Total Posts : 563
   Posted 10/31/2017 2:20 PM (GMT -6)   
On the other hand, they say it can be hereditary and many people don’t show symptoms... so, maybe it’s a totally separate issue and it’s only because I have the annoyance of LymeCo that it became symptomatic.

*groan* I hate these infections. One day I’m dressing up for Halloween as the scariest thing I can think of- a spirochete!
Lyme, Babesia, Bartonella. Symptoms began 5/2016, didn't start treatment until 9/2016. Slow but steady recovery.

*twitch twitch*

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33821
   Posted 10/31/2017 2:31 PM (GMT -6)   
BabsBunny said...


*groan* I hate these infections. One day I’m dressing up for Halloween as the scariest thing I can think of- a spirochete!


Well, make sure you surround yourself with a biofilm and make it really scary!!!
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

BabsBunny
Veteran Member


Date Joined Mar 2017
Total Posts : 563
   Posted 10/31/2017 8:56 PM (GMT -6)   
I was prescribed Xiidra (Lifitegrast), an eye drop for "Dry Eye Disease".
I just found out it was only approved last year, and the FDA and I don't exactly have a trusting relationship. User reviews are mixed and tend toward the bad side (then again, if a medicine works the way you expect it, you don't go posting reviews about it, do you?)

According to the insert this is how it works:
"Xiidra (lifitegrast ophthalmic solution) 5% is a lymphocyte function-associated
antigen-1 ( LFA-1) antagonist supplied as a sterile, clear, colorless to slightly
brownish-yellow colored, isotonic solution of lifitegrast with a pH of 7.0–8.0
and an osmolality range of 200–330 mOsmol/kg.
Xiidra contains Active:lifitegrast 50 mg/mL;Inactives: sodium chloride, sodium
phosphate dibasic anhydrous, sodium thiosulfate pentahydrate, sodium
hydroxide and/or hydrochloric acid (to adjust pH) and water for injection

"12.1 Mechanism of Action
Lifitegrast binds to the integrin lymphocyte function-associated antigen-1
(LFA-1), a cell surface protein found on leukocytes and blocks the interaction
of LFA-1 with its cognate ligand intercellular adhesion molecule-1 (ICAM-1).
ICAM-1 may be overexpressed in corneal and conjunctival tissues in dry eye
disease. LFA-1/ICAM-1 interaction can contribute to the formation of an
immunological synapse resulting in T-cell activation and migration to target
tissues. In vitro studies demonstrated that lifitegrast may inhibit T-cell
adhesion to ICAM-1 in a human T-cell line and may inhibit secretion of
inflammatory cytokines in human peripheral blood mononuclear cells. The
exact mechanism of action of lifitegrast in dry eye disease is not known."



So does anyone with brains understand that and if this could be a BAD thing for Lyme/ the immune system? I'm leaning toward not taking it anyway. I really really really don't trust anything new from the FDA.
Lyme, Babesia, Bartonella. Symptoms began 5/2016, didn't start treatment until 9/2016. Slow but steady recovery.

*twitch twitch*

Georgia Hunter
Veteran Member


Date Joined May 2012
Total Posts : 2132
   Posted 11/1/2017 5:11 AM (GMT -6)   
I actually read something about this this morning. Dry eyes are a result of dehydration and can be compounded by a Vitamin A deficiency. Eat bright colored foods (red, yellow, orange, or green) along with green leafy vegetables to increase folate. B6 levels need to be maintained by eating nuts, seeds, etc, and water intake should be increased. If you are already drinking 6 to 8 glasses of water a day, then your salt intake needs to be examined. Caffeine needs to be decreased and preferably eliminated.

I'm afraid once the abrasion is there, I'm not sure you can do anything about it that doesn't involve a laser. Correct your deficiencies and your dry eyes should get better.

BabsBunny
Veteran Member


Date Joined Mar 2017
Total Posts : 563
   Posted 11/1/2017 9:09 AM (GMT -6)   
The abrasion has healed, but she said once it happened the cornea is weakened and more likely to tear again. Also the shape of my cornea is perhaps draining moisture too quickly, and so should try plugs :-(

I take good vitamins and no caffeine.The question is whether or not they are getting absorbed at all. This happened very suddenly, during a Babesia flare up.
Started taking digestive enzymes and adding a pinch of mineral salt to some of my water... two days ago was pretty good, then they just got super dry again.
Lyme, Babesia, Bartonella. Symptoms began 5/2016, didn't start treatment until 9/2016. Slow but steady recovery.

*twitch twitch*

hope floats
Regular Member


Date Joined May 2011
Total Posts : 27
   Posted 3/1/2018 4:56 PM (GMT -6)   
Hello BabsBunny. Your optometrist is correct to recommending you consult with an MD. I would go one step further and make sure your MD is a corneal specialist. EBMD is a disease of the outer most layer of your cornea and needs to be evaluated by an optholmalogist who specializes in corneal dystrophy. It can be a progressive disease if you don't take care of it. I presented eye pain from corneal abrasions, dry eye and lots of horrific pain which is how I got diagnosed with EBMD. It took about 7 months for complete healing as I kept getting recurrent abrasions. I felt like I had foreign objects in my eye. Awful pain. He prescribed an antibiotic eye drop and Lotomax a steriod eye drop which is used sparingly. The cornea was debreeded and I wore a contact lens bandage for all that time. My MD also installed punctal plugs which have helped with dry eye but I need to use lubricant often to keep the dry eye at bay. EBMD did affect my vision. I had blurriness and photophobia was very problematic. I kept needing new prescriptions. about 3 years later I was diagnosed with Thygeson's Disease and that was another ordeal. Just lucky, I guess!!!
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