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I woke up one morning 16 months. ago with extremely foggy vision in one eye, could barely see. In a few hours it progressed to total blindness in that eye. Was sent to a neuro-ophthalmologist who dx. me with "probable MS" after an MRI showed a few small lesions. I got three days of IV steroids and got a very small amount of vision back. That eye is still functionless, considered blind although thankfully I can see shadowy stuff now but that's about it. No real details, no color. Basically nothing. It has devastated me beyond belief.

My eyesight is now abysmal (and I was already very nearsighted!! ) I have a five and a two year old and am beside myself, wanting to see them grow up. :( I accepted the MS diagnosis since I had had a tingly foot for a month before my optic neuritis came on overnight and these things seemed to fit the dx. But my story doesn't fully fit the MS picture. 1) I never recovered my vision and most MS patients with optic neuritis do. The doctors have no explanation. 2) I had a weird rash of hives on my torso for three days, a few months before the blindness 3) we live in an area with tons of ticks and some reported Lyme. I pulled a tick out of me just last week. 4) I got a positive ELISA after this happened, then a positive Western Blot. But my neurologist downplayed it, said no Lyme. Then an Infectious Disease Dr. said no Lyme since I only have the optic neuritis basically and the passing numbness/tingling in my foot.

I have a million floaters in my eyes-obscures some of my remaining vision. :( I have memory loss, rage/anger attacks, foggy feelings in my brain-cognitively and physically.

How will I ever know for sure if it's Lyme or MS?? I am beyond terrified of losing my remaining eyesight. No neuros will take the Lyme thing seriously. I just want to make sure so I don't miss treating something that could save my vision!!

Has anyone ever heard a story like mine that was Lyme and not MS? Meaning literal blindness from Lyme? I have read a couple stories but not heard any personally. Can anyone tell me any or help me out in any way? I'm sorry this is so long; I am DESPERATE for help!! Thank you so very, very much.
I had a very similar experience. I had a tick removed by my Dr and had the onset symptoms of Lyme and a positive blood test (which was withheld from me as the 2nd test was negative). Several years later (and no treatment), I woke up one morning (about 1995) to to discover that I was blind in one eye. The blindness went away after a few hours. My Dr checked me for stroke but found no evidence for one. About 10 years later I was diagnosed with Lyme Disease after I obtained my medical records and found the positive blood test and was finally treated, but today I still suffer from the lingering aftereffects.

My advice to you is to request long term treatment (at least 6 months) with minocycline (or doxycycline) to treat your "MS". A University of Calgary study has shown Minocycline to be very effective in reducing the brain lesions, inflammation and neuro damage done by MS and, conveniently, it is effective against the spirochete that causes Lyme Disease. I am certain that Minocycline will help reverse the inflammation that is causing your blindness, but it may be too late to restore it completely. I used minocycline to reverse the memory loss and nerve pain that remained even after two months of IV cephtriaxone. Minocycline gave me my brain back. Minocycline had been used by millions of people to treat adult acne and is very safe, and many people with adult acne who also took minocycline reported that their MS symptoms faded dramatically. However, doxycycline and tetracycline are useful as well if for some reason you cant get minocycline.

The U of Calgary is currently doing a large scale, long term trial of minocycline treatment for MS, but their small scale study (and several others) have been extremely successful.

Hope this helps.

edit:If you do take minocycline and actually have LD, expect a herxheimer reaction to begin several days after you begin taking it. This may make you feel terrible but it will confirm that you have LD.
Duncan, you are a lifesaver. Thank you so much for your reply, it is so very appreciated. I have a follow up MRI and MRA with my neurologist in August. I am going to make an appt. with a LLMD ophthalmologist in September. He is four hours away but I am hoping he can offer me some insight and I am going to ask him if I can please go on the minocycline. I will beg!! No one has been willing to give me antibiotics yet.

Like you said, I just want to stop the inflammation in my optic nerve/brain. I realize that my vision loss is most likely permanent, although when I think about it I have a breakdown. But I just want to guard from anything else happening to the precious remaining sight I have. :( I had a 2nd MRI six months after the initial one when the blindness hit. It still showed my optic nerve enhanced. They said it must be a "long running inflammation." Makes me think Lyme because something is continuously attacking my optic nerve. I am praying that if I can get on the minocycline it will help me.

Thank you from the bottom of my heart!
These are links to a US Government website, Pubmed, and abstracts to two papers which might help convince your Drs to treat you with minocycline:

The antibiotics doxycycline and minocycline inhibit the inflammatory responses to the Lyme disease spirochete Borrelia burgdorferi.
http://www.ncbi.nlm.nih.gov/pubmed/19301981

Pilot study of minocycline in relapsing-remitting multiple sclerosis.
http://www.ncbi.nlm.nih.gov/pubmed/18574932
Thank you so much Duncan; this will be great information to bring along to my next neuro appt. I hope he or someone will listen to me soon and give these antibiotics a try. I appreciate your help so much!!





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