Need Diagnostic Help: Save me from a biopsy
 

Hi I was hoping to get some input from Lyme patients, or anyone who may know about the diagnostic side of Lyme. I have been drastically sick for six months, with lyme-like symtoms, I have a 38mm white matter lesion on my MRI and oligoclonal bands in my spinal fluid. I test negative for lyme (Elisa and Western Blot), but my mom is convinced I have it and doctors have other ideas (MS, Lymphoma, etc). My treatment plan and pending biopsy will be based on what I decide about lyme, and I just don't have enough information to decide whether or not I should pull Lyme off the table.

I have a few questions that I can't find answers to. Any input would be greatly appreciated and might help me make the right decision here.

My questions are:

1. What are the MRI characteristics of lyme lesions? From my research, it seems that they are similar to a demyelination, and are usually small, T2 hyperintense white matter lesions. Does anyone have anything to add to that? Has anyone ever heard of a large lyme lesion? Mine is 38mm, which I assume could potentially rule out lyme, but I can't find anything online about lyme lesion sizes or MRI studies.

2. Do lyme lesions show up on CT? Mine do not.

3. I know that oligoclonal bands can show up in the CSF for lyme patients, but do Oligoclonal bands also show up in the blood? I have O-bands in my CSF, but not in my blood.

4. Do lyme lesions enhance/glow with MRI contrast? If so, how long do they usually enhance for? (mine has been enhancing for almost six months)

5. Does anyone know if a biospy would definitively prove or disprove lyme?

6. If someone has neuroborreliosis (neuro lyme) with white matter lesions, what are the chances that lyme wouldn't show up on a spinal tap? (my tap was clean for lyme, but i hear that CSF rarely produces a positive lyme test)

7. Are there any other diagnostic tests that would differentiate between Lyme, MS, and Lymphoma? (in the absence of a positive Elisa or Western Blot, etc?)


We ran the lyme tests in september, november, and again in March. The final ones were sent to Igenex. All negative.

Any input on even one of these questions would be great. If someone has lyme with brain lesions, I would love to hear about the diagnostics that were done, and if you don't mind sharing, the results.

Thanks in advance for any help!

Mandy