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» LymeNet Flash » Questions and Discussion » Medical Questions » Lyme Disease and Cellcept

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Author Topic: Lyme Disease and Cellcept
clr18287
Junior Member
Member # 18819

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Hi all,

I have been battling pars planitis and uveitis for a long time now... chronic cystoid macular edema and retinal vasculitis being the worst of it. After constant steroid eye drops, the inflammation will not go away. My doctors are strongly recommending that I go on CellCept.. an immunosuppresive drug. My problem is that though my tests continue to come back negative for lyme..I am really really sure it's the culprit. I can't deal with the eye inflammation any longer as it's already damaging my optic nerves and eyes. If in fact I do have Lyme.. will it cause the infection to worsen?

I went on IV steroids last year and ever since then it's been awful!! Worst symptoms of my life.. it started everything and I've never been the same. I also have brain lesions but I don't have any MS symptoms. I went on Copaxone for that as well and felt awful - another immosuppresive type drug.

Any input is appreciated
Thanks

--------------------
23/m
Dx'ed MS in 2005 - symptoms since I was 6.
(Questioning Lyme)

Uveitis, Cystoid Macular Edema, Chronic Pars Planitis

Posts: 8 | From Upstate Ny | Registered: Jan 2009  |  IP: Logged | Report this post to a Moderator
dmc
Frequent Contributor (1K+ posts)
Member # 5102

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All I can say is get to a LLMD. Go to "Seeking Doctor" page or contact local support group for names.

There are other test and labratories that are good for finding tick infections.

goto http:///lymepa.org and download their green booklet. That may help you give your doc a comprehensive list of your symptoms...even those you forgot you had.

Good luck

Posts: 2675 | From ct, usa | Registered: Jan 2004  |  IP: Logged | Report this post to a Moderator
clr18287
Junior Member
Member # 18819

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I've seen Dr. C in Mt. Kisco who put me on 300mg of Doxy.. no help. He doesn't have any expertise in dealing with eye problems related to Lyme. I haven't had any luck finding LL Neuro-opthalmologists either.

--------------------
23/m
Dx'ed MS in 2005 - symptoms since I was 6.
(Questioning Lyme)

Uveitis, Cystoid Macular Edema, Chronic Pars Planitis

Posts: 8 | From Upstate Ny | Registered: Jan 2009  |  IP: Logged | Report this post to a Moderator
dmc
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up for more imput
Posts: 2675 | From ct, usa | Registered: Jan 2004  |  IP: Logged | Report this post to a Moderator
clr18287
Junior Member
Member # 18819

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I'll have to give the recommended LLMD Opth. a try. I am incredibly nervous about the cellcept suppressing my immune system with a possibly active infection..

--------------------
23/m
Dx'ed MS in 2005 - symptoms since I was 6.
(Questioning Lyme)

Uveitis, Cystoid Macular Edema, Chronic Pars Planitis

Posts: 8 | From Upstate Ny | Registered: Jan 2009  |  IP: Logged | Report this post to a Moderator
Brent
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GEEZ...WHO ARE YOUR DOCTORS???

I have the same eye troubles as you.

Steroids are the worst thing you can do if you do have Lyme. Like putting fuel on a fire.
And don't take the CellCept.

The best thing is go to an LLMD and LLMD Ophthalmologist as fast as you can.

The only thing that has helped me is IV Doxy.

Pm me if you need more info.

Good Luck

Posts: 12 | From USA | Registered: Aug 2007  |  IP: Logged | Report this post to a Moderator
lemonsnotlymes
LymeNet Contributor
Member # 19926

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Welcome... I don't have your particular symptoms and I do not have MS symptoms.

But I do have a couple of lesions on the brain discovered from a c-spine MRI (for a painful, stiff neck) and eventually I had a brain MRI.

Before I knew I had lyme I received a steroid injection in my neck to supposedly make me feel better.

Within 2 days my fingers and toes were tingling, the fatigue was crushing, my joints hurt so badly, and the list goes on.

I came to learn that steroids are contraindicated with Lyme Disease. The effects of the steroids PROVED at least to me that I had Lyme.

Yet, because of a negative Lyme blood test and spinal tap, the diagnosis from a neurologist was MS. He believed I should start taking injectable MS drugs immediately.

Maybe I do have MS and discovered it before it became symptomatic?

Maybe it was caused from Lyme?

Maybe if the Lyme is treated the lesions will disappear? It is all speculation and it doesn't matter at this point.

FWIW, I still test negative for the lyme bacteria, but positive to a few other tick co-infections.

Do what you can to find out what is going on with you.


Do not sit and accept this diagnosis as the final say. Go with your gut feeling. Find the right doc for you.

For me, I am not ignoring the MS diagnosis as I think that would be naive. However, I am doing everything I can do to irradicate these bugs from my system, develop a strong immune system and build a better body.

Please keep us posted.

Posts: 103 | From Northern VA | Registered: Apr 2009  |  IP: Logged | Report this post to a Moderator
Alana
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Did you make an appointment?
Posts: 214 | From where ticks flourish | Registered: Dec 2007  |  IP: Logged | Report this post to a Moderator
clr18287
Junior Member
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Not yet, good thing is that I'm only 2.5 hours away by car. I am skeptical as always however. These doctors charge incredibly large amounts of money for the first visit because they do not accept insurance.. My family and I are drained of $ because of this. I am going to see if she will possibly do a phone consult.

--------------------
23/m
Dx'ed MS in 2005 - symptoms since I was 6.
(Questioning Lyme)

Uveitis, Cystoid Macular Edema, Chronic Pars Planitis

Posts: 8 | From Upstate Ny | Registered: Jan 2009  |  IP: Logged | Report this post to a Moderator
Alana
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Member # 14077

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She accepts insurance...call to doublecheck if she accepts yours. Because it's your eyes, I wouldn't do a phone consult.
Posts: 214 | From where ticks flourish | Registered: Dec 2007  |  IP: Logged | Report this post to a Moderator
Lymetoo
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Member # 743

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quote:
Originally posted by clr18287:
[QB] My problem is that though my tests continue to come back negative for lyme..I am really really sure it's the culprit. ............If in fact I do have Lyme.. will it cause the infection to worsen?

I went on IV steroids last year and ever since then it's been awful!!

Get an LLMD ASAP!!!!!!! GEt a Western Blot test through Igenex ASAP!! TEsts #188 and 189.

Steroids are the absolute WORST thing that can be done for Lyme. It makes it go DEEP. It may also skew the test results!!!!

That may be why your test results are coming back negative.... though the main reason is probably the lab you used.

Things that suppress your immune system are also not good for you if you have Lyme.

You need help immediately!!

In the meantime, get a bottle of high quality mangosteen for your eyes!

PS .. Left untreated, it WILL get worse!!!

--------------------
--Lymetutu--
Opinions, not medical advice!

Posts: 96217 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
   

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