Was anyone misdiagnosed with MS or Fibromyalgia?

Hello. I am still in diagnosis limbo. I just did a lumbar puncture yesterday. Got about a week until I get the results. They did find something on my brain MRI but I now have 2 neurologists that don't think it's what they would usually see in MS. The spine MRI was clean.

I guess my questions are:

1) Has anyone here had something show up on an MRI but it still ended up being Lyme in the end?
2) IS an LLMD and Igenex the way to go if I suspect Lyme?

I found an LLMD in my area and intend to see him soon. It's just been hard to pay for everything. He will be the 13th doc I have seen but the first that is a LLMD.

I was diagnosed with Fibro several times! LOL! I had one doc that was so convinced that I had MS that he started screaming at me in his office when I wouldn't start MS meds that same day.

Yet, here I sit, several years later, having healed from tick-borne infections with none of those symptoms any more.

I had several lesions on my brain at my last MRI quite a few years ago.

I would suggest that you go over the Master Symptom List for Lyme and the symptom lists here: www.lyme-symptoms.com/LymeCoinfectionChart.html

If you 'see yourself' there, then be sure you get yourself treated for Lyme - at least it's something that you can heal from!!

Using either a LLMD or a LLND is one of the best ways to heal from these infections. They have been trained by ILADS standards and should follow what we say here as well - since we are all interested in what is known as evidence based medicine.

Igenex and Stony Brook labs are the ones that have the most sensitive tests and have been trained on how to read the results (you'd be amazes at how many 'professionals' can't read one!). But, the tests have a lot of limits too - only about 1/2 of those with Lyme will test positive. Here are two of the biggest reasons why:

*They only test for 4 or 5 of the over 100 strains that are known to be in the US. at the best labs (Igenex and Stony Brook)

*It requires an immune response, and frequently our immune systems are so overwhelmed that a response doesn't happen or it's too weak to register.

Please do let us know what the doc's have to say!!

Akkami, My husband was diagnosed with ALS based on neurological testing and symptoms, but he tested positive for Lyme through Igenex. He chose to do the lab test because of this being a fatal diagnosis. I think he would have wanted to if he was diagnosed with MS or any other serious autoimmune disease. We think it's worth it, but that is a decision you would have to make. It is hard for many to pay out of pocket expenses since the LLMD's don't usually accept insurance. Toby used alternative therapies that cost of very little, but he would have seen an LLMD if he felt he needed to. He may still do it at some point if his arms and hands don't improve this spring.