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rare eye diagnosi*****advice needed****

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Posted 10/5/2013 2:44 AM (GMT 0)
My eye dr referred me to a retinologist because he saw "white dots" on my retinas which he described as self limiting and common for women aged 20-40 yrs old. Well the retinologist disagreed and diagnosed me with PIC...punctated inner choroiditis...a very rare eye illness that involves hundreds of lesions on both choroids. The cause is either infectious or autoimmune but in my case both have been pretty much ruled out by blood tests and an LP. So I asked the next obvious question...could it be Lyme? And to my amazement the doc said no...it is always autoimmune...even though all tests were negative. Why are these drs so bull headed over Lyme? i don't think I will ever understand it? The problem is this illness left untreated leads to blindness but the treatment is cellcept which is an immune modulator that completely suppresses the immune system (same med they use for transplant patient)...so clearly contraindicated for me as aLyme patient. I feel like I'm stuck...don't know what to do...no one wants to hear about Lyme :(
And Lyme unfortunately right now is my life
Posted 10/5/2013 3:59 AM (GMT 0)
hi! I am so sorry that you are dealing with this eye issue. are you having any symptoms? i wish i had some knowledge about this, but i am so new to this lyme thing...i wish you nothing but the best
Posted 10/5/2013 8:43 AM (GMT 0)
I've seen malaria cause issues like you are having so maybe it's Babesia or another protozoan?
Posted 10/5/2013 11:36 AM (GMT 0)
Lyme most certainly does effect the eyes. I am having issues with my pupils due to inflammation of cranial nerves. Ive also had visual problems and changes throughout the entire course of the disease.

It is very likely part of the problem you are dealing with or you are dealing with two problems at the same time. I think Lyme can aggravate any other things festering in your body. You have to follow up on this with the eye drs. I think they may prescribe steroids which are not good for Lyme patients. Looks like you have a good chance of getting rid of this and maybe you will need a team of doctors helping you with your problems.

Several years ago I had an eye issue that needed surgical correction. I chose Arun Gulani in Jacksonville, FL. He is worth the trip and knows what he is doing. He also does a lot with laser.

Good luck to you and hang in there.
Posted 10/5/2013 11:52 AM (GMT 0)
http://www.euretina.org/hamburg2013/downloads/Choriocapillaritis-%20C.%20Herbort.pdf

Article on your condition and related. Somewhere in here it mentions some of these conditions can be Lyme and Syphilis as related.

Have you had any vaccines recently ?

Post Edited (BarnGurl) : 10/5/2013 6:02:08 AM (GMT-6)

Posted 10/5/2013 12:03 PM (GMT 0)
1B.5.4.3. Punctate inner choroidopathy (PIC)
Punctate inner choroidopathy (PIC) is a subset of multifocal choroiditis characterised by a similar clinical picture as far as symptoms, fundus signs and neovascular complications are concerned except that the lesions are smaller. In the original description by Watzke and colleagues the disease is reported to be bilateral and predominant in myopic women.
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55
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In our experience the disease tended to be unilateral
involving predominantly the more myopic of the two eyes. Like multifocal choroiditis, in our hands,
new lesions responded to systemic or sub Tenon’s corticosteroids and additional immunosuppressive therapy was not necessary. Corticosteroids were also thought to have effect on the neovascular membrane.
Posted 10/5/2013 12:54 PM (GMT 0)
Desperate4dx, you need to get your eyes treated immediately. It is true that corticosteroids are contraindicated for people with Lyme because of how they suppress the immune system. Unfortunately, sometimes we have to put Lyme treatment on hold while we treat more urgent issues such as blindness. If you lose an eye or both eyes due to Lyme, you may never regain your eyesight back. That is much worse than a Lyme infection. Remember, Lyme is active and symptomatic while in spirochete form. As long as you are taking antibiotics while on corticosteroids, the bacteria will "hide" from it and go into cyst mode. While in this mode you will be controlling it until you can get the eye issue resolved. You can also control and continue to kill Lyme with a rife machine or with herbs.

I just remembered that my mother-in-law had to take corticosteroids for an eye issue and these were localized to the eye in the form of eye drops so it is not something that is taken orally and that travels all over the body.

I have Lyme. and recently I had a severe allergy reaction for which I had to take Prednisone (a corticosteroid) to treat it. I was OK while taking it and my Lyme did not worsen.

Post Edited (Healing98) : 10/5/2013 7:15:10 AM (GMT-6)

Posted 10/5/2013 3:56 PM (GMT 0)
but the treatment is cellcept which is an immune modulator that completely suppresses the immune system (same med they use for transplant patient)...so clearly contraindicated for me as aLyme patient.

healing98 I dont think they are planning on using steroids but I think you are right that they would help.
Posted 10/5/2013 5:12 PM (GMT 0)
I would say find someone who has some knowledge of Lyme to get your eyes examined before choosing to start treatment with a doc that has no clue about it and how it affects the body. How could they possibly understand the consequences of any action if they don't understand what is going on?

At the very least, be sure to have a nice long talk with your LLMD about this!
Posted 10/6/2013 3:21 AM (GMT 0)
Well I guess I should back up and explain that I feel that my Lyme flare was caused by high doses of oral prednisone prescribed by my neurologist to break the cycle of daily migraines that I had been having for months. I discussed this with him and of course he doesn't agree. Prior to this flare I have been in remission just dealing with migraines like I have been forever. So when I started having blurry vision and seeing dark figures in my periphery and shimmery lines, I went to have my eyes examined and this was what they found. So of course I am cautious about starting a 2 year course of immune modulators that will lower, my already lowered immune system...
Posted 10/6/2013 3:26 AM (GMT 0)
Shelly71...thank you and yes my symptoms are blurry vision near and far that I can eventually blink clear (my prescription hasn't changed), vertigo, shimmery lines, dark shadowy figures in my peripheral vision, and I walk into walls and furniture...I guess I misjudge where it ends and I begin lol
Posted 10/6/2013 3:35 AM (GMT 0)
Barngirl no I haven't had any recent vaccines. And I believe the doc I see in a good one he's from Wills Eye in Philly and came very highly recommended. Actually he literally wrote the text book on uveitis (Amazon) which is I also have...so he is the dude. The thing that never ceases to amaze me is that when I suggest that it could be related to Lyme the answer is always "no". I wish these guys would get their heads out of the sand already. Clearly in his words he tested me for 99.9% of causes and they were negative. Is Lyme that remote of a possibility? My God they tested me for neuro syphylis and tb...not all that common in my demographic lol
Posted 10/6/2013 3:42 AM (GMT 0)
Healing98...the problem is...is that the treatment is for 2 years at least. Right now the retinologist says the eyes are "stable" so he wants to take the wait and see approach. I'm being checked every 6wks right now. I'm just worried if that days comes when he says oh there a change and we need to start you on the cellcept...what the heck am I going to do? My next appt is Monday
Posted 10/6/2013 3:42 AM (GMT 0)
Healing98...the problem is...is that the treatment is for 2 years at least. Right now the retinologist says the eyes are "stable" so he wants to take the wait and see approach. I'm being checked every 6wks right now. I'm just worried if that days comes when he says oh there a change and we need to start you on the cellcept...what the heck am I going to do? My next appt is Monday
Posted 10/6/2013 3:44 AM (GMT 0)
Traveler...that is the plan my friend...as soon as I find a LLMD I will indeed discuss this issue with them. I was just wondering if anyone else has and a similar problem
Posted 10/6/2013 11:41 AM (GMT 0)
If those other infectious diseases are being considered then not sure why lyme would not be. Neuro syphylis has a similar presentation to neuro lyme. And the question is can you treat the eye disorder without treating the underlying disease process.

I think you have to go to your appt get the eye medicine and then consult with LLMD in the meantime or asap. If you are ever in need of the laser option would def recommend the dr in FL.
Posted 10/6/2013 1:26 PM (GMT 0)
If you have a LLMD you may want to investigate intramuscular procaine penicillin-G. Might be worth a shot.
I know you dont have syphilis but the symptoms to lyme can be similar and respond to some same tx.

http://emedicine.medscape.com/article/1169231-overview#aw2aab6c11
Posted 10/6/2013 2:56 PM (GMT 0)
Well, you are very wise to realize that it was likely the prednisone that triggered this whole thing! And wise to realize how a 2 year course of immune modulators could possible affect you.

What about either calling or going to your LLMD and asking him/her about it? I would think that you at least need to be back on a low dose of something (herbs or abx) while you go through all of this.

And don't forget that Bartonella can cause eye issues as well.

No matter what you choose to do, I wish you the best of all outcomes!!
Posted 10/7/2013 1:49 AM (GMT 0)
Traveler...I wish I realized it sooner lol...I took pred twice once in Jan and then again in May, and my sx were in full swing by March but my headaches were daily and so blinding that I couldn't think. I put two and two together just about a month ago once i started researching Lyme...just made sense. And I will share all of this with my LLMD as zoon as I find one. I'm still on the hunt. And as far as co-infections, I haven't been tested yet, I am super curious what's going on with me beside Lyme.
Posted 10/7/2013 1:58 AM (GMT 0)
Barngurl thank you for that revelation! That is 100% true...that is exactly why he hasn't treated my eyes so far because he didn't know the cause...and if can convince him that it is in fact Lyme, then maybe I will have yet another dr on the team. He just immediately said nope it's not Lyme...I guess we will see what he says tmrw
Posted 10/7/2013 3:09 AM (GMT 0)
Im wondering if he can be on your team if he refuses to recognize the lyme. Do you have any documentation you could bring to show him ?
Posted 10/7/2013 6:50 PM (GMT 0)
Well i just got back from eye doc and I flat out told him I have chronic Lyme and I'm on doxy and where do we go from here? Well following the extensive eye exams, happily he told me my eyes are still stable :) so he said he felt comfortable enough for now to hold off on treating the eyes with immune modulators. He didn't seem hopeful that doxy alone would be enough to fix the eye problem, but I just can't deal with that right now. He will recheck me in 3 months. So for now I can focus on building up my immune system so then those meds can tear it back down lol
Posted 10/7/2013 8:37 PM (GMT 0)
Good job advocating for yourself and great news about your eyes. Have you ever considered switching over to Amox because they also use it to treat several eye disorders auto immune related etc.
Posted 10/7/2013 10:50 PM (GMT 0)
Yeah thanks ;) and no i was just happy to get any abx at all since i don't have a LLMD. My doc has suggested after 5 months I may be switched to Biaxin.
Posted 10/8/2013 12:36 AM (GMT 0)
I had a considerable amount of eye issues not resolved on doxy. I am not having the same problems with the penicillin. Also I have found the doxy difficult to stay on at high doses. If this is the case for you he can possibly switch you over. good luck.

Post Edited (BarnGurl) : 10/8/2013 6:06:36 PM (GMT-6)

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