I was diagnosed about four and a half years ago. I don't understand what is wrong with me. My vision is absolutely terrible right now. It seems partially linked to my sinuses. I was first diagnosed with MS, this vision problem comes a few times a year and it's scary because this time seems the worst...
I just don't know what to do...
Thank you,
Kuda
Posted by nybasketball212 (Member # 28309) on :
Don't get caught up with Lyme if you're suffering from optic neuritis. This is the classic path of MS. Optic neuritis is the most common first sign of MS. Stick with a neurologist.
Posted by lymegal23 (Member # 28573) on :
^ thats not necessarily true
lyme can cause optic neuritis too
especially if its been undiagnosed and untreated for a while. she did say she got very sick from MS treatment. and that tends to be a hallmark of lyme people who get MS treatment. they always get worse. bcuz theyre not treating the right thing
Posted by momlyme (Member # 27775) on :
I agree with lymegal... my son has all kinds of vision problems - don't know which infection causes this... could be lyme or coinfections.
lymekuda- Do you have a Lyme diagnosis now?
Posted by lymekuda (Member # 23972) on :
Hello everyone,
Yes I do have a Lyme diagnosis. Got it about 3 years ago. I was bitten when I was 10 and am 25 now. Some weird symptoms since then. When I was just turning 21 I was diagnosed with MS.
They rushed me onto Rebif a MS drug off of a MRI that said brain lesions that "MAY" reflect Multiple Sclerosis... So being young I took their word for it and started Rebif.
That drug took me from 3-4 symptoms to 82 symptoms in 15 months... VERY frustrating!
I don't know maybe I need IV. I wish I never took Rebif I would be so much better off...
Posted by Rumigirl (Member # 15091) on :
You need to find a Lyme Literate opthalmologist, if at all possible. Post in the "Seeking a Doctor" section. I would recommend being willing to travel to one, if you are able. If you don't get responses there, post it under Medical Questions, also.
Do you have a good LLMD? It DOES sound like you should be on IV. If I were you, I would push hard for it. And I would think that you should be on IV for quite a while. Of course, I'm not a doctor and am going on my experience and those of many others.
Look at Dr. B's Guidelines. There is a link to them on the stickies at the top of Medical Questions. Or it's also listed at ILADS.org.
Is Rebif a steroid?? If so, how sad! But don't give up. With this darned disease complex, you have to have the persistence of a bull dog!
Posted by Robin123 (Member # 9197) on :
We're all different, but I've been able to fix all my Lyme eye symptoms by drinking mangosteen juice, an anti-inflammatory antioxidant juice.
There are lots of brands in healthfood stores and online. I drink the Ultra one from Trace Minerals with 72 minerals added.
If you try it, go slow and drink a lot of water also, as it can be powerful.
Posted by dsiebenh (Member # 5353) on :
My optic neurologist said this is common in both her Lyme and MS patients.
This was my first dx about 20 years ago, but the doc was wrong. According to the optic neurologist, It should have been called "dipoplia" (double vision), not optic neuritis.
At the time he attributed it to stress or depression, both wrong in hindsight.
Posted by lymekuda (Member # 23972) on :
Thank you to everyone who replied to this thread!!!