Diagnosed with Devics

In late Oct, the eye sight in my right eye started getting blurry. I went to the ophthalmologist and he said I had a swollen optic nerve. I have had 3 MRI"s now, spinal tap, tons of blood work, etc

I don't know how deep the test was for Lyme disease but it came back negative. The only symptom I have is my right eye and my vision. My eye sight is blurry and the light doesn't "come through" normally like it should. My MRI's didn't show anything other than a spot in my spine around my neck of which I had neck surgery about 3 years ago (scar tissue?)

I certainly hope in the end it's not Devics. I was put on 16 days of prednisone and 5 days of IV solumedrol (spelling.) another type of steroid/antiimmune drug. I felt like my eyesight got worse after taking these.

Want my eyesight back to normal

Hi VA guy!
Welcome to our community! I'm glad you found us.

As Multifacetedme said, the best place to start is with reading our "New to Lyme?" thread as it contains a lot of really good information.

From what I just found on Devic's, it could be easily misdiagnosed as Lyme disease or even Bartonella possibly. /www.ninds.nih.gov/Disorders/All-Disorders/Neuromyelitis-Optica-Information-Page

"Neuromyelitis optica (NMO) is an autoimmune disease of the central nervous system (CNS) that predominantly affects the optic nerves and spinal cord. It is sometimes also referred to as NMO spectrum disorder.In NMO, the body's immune system mistakenly attacks healthy cells and proteins in the body, must often those in the spinal cord and eyes. Individuals with NMO develop optic neuritis, which caused pain in the eye and vision loss. Individuals also develop transverse myelitis, which causes weakness or paralysis of arms and legs,and numbness, along with loss of bladder and bowel control."

Considering what I read says there are no treatments for this condition, you should be checking other possible causes.

Look over the Lyme, Bartonella and other tick borne infection symptom lists (they are pretty extensive) to see if you have other possible symptoms that might help confirm an infection as part of your issues. I would also encourage you to look into the common viruses that we deal with as well - all herpes viruses, Cytomegalovirus (CMV), EBV, and others.

At the very minimum, I would encourage you to also begin to detox and to eat very well to help your body get rid of toxins, and to provide it with a lot of really good nutrients.

ETA: Sorry, Multifacitedme! I edited to mention the right member. Man, I need to get more sleep!

Well, we are happy about that! Although that's more than enough.

The tests for these infections are not good. They rely on the immune system to produce antibodies, but Lyme inhibits the immune system - so it can't. At least not enough for many people to be able to get a CDC positive test. I had to be in treatment for a year before I could test fully CDC positive.

The other testing options rely on there being enough bacteria in the drop or two of blood to find - but it doesn't take a lot of bacteria to make a person really quite ill, so that has a lot of limitations as well.

The best thing to do is to see a Lyme literate doctor, one that knows enough to be able to diagnose you clinically - then trial a few treatments. Depending on how you respond to treatments usually tells us whether or not we have the infections.

Keep asking questions!! Right now it's really hard for us to say if you have Lyme or other tick-borne infections or not, as your symptoms are limited to just your eyes. It does happen though, people with symptoms in just one 'system' or area of the body can have these infections at the root of their issues.

Hi my sister in Australia has just been diagnosed with Devics and is desperate for some support and advice - I found this thread but no dedicated forum. I wanted to direct her here as you guys helped me so much when I had UC - anywhere I can recommend her she is paralysed from waist down now - got worse after after treatment yesterday. Can anyone help?