Thank you for your advice, Jen!
I don't live in U.S. and there are very few (if any) Lyme literate doctors in my area, or country. It's mostly Neurologists who treat Lyme here.
I haven't had Western Blot, in which they test several lines. I don't know if they do it here.
I have had one follow up test which came back as "uncertain" and it tested VlsE (moderate reaction) OpsC (weak ie. not strong enough for positive). The dr had concluded "possible late immunity, no treatment required". Some doctors basically think the levels need to be clearly up that the treatment is needed.
I've seen 4 doctors, one said this is something else, two said possible late immunity, no action required, and the fourth one wants to find out.
They've taken IgG and IgM three times and it's confusing, since there result is always the same, IgM is slightly elevated, igG is normal. C-reactive protein under 8, ESR 3. I have had basic blood tests and they seem ok.
The confusing part is that my IgM has been up for six months, and since I had neurological symptoms in Oct/Nov my doctor wants me to have the Lumbar puncture now. He is also a MS doctor and thinks my symptoms are just as likely to be MS. I don't believe in having MS myself. And I really don't want to go through it, if it won't reveal anything, as it's risky, and it will cause pain and problems. I'm rather frustrated with the blood tests, but at least they don't cause any pain enough to mention!
Currently I'm having Sciatica type of pain, which I think is due to a work-related back problem and I'm taking NSAIDs for it. I suppose I need to postpone the puncture anyway, as it's scheduled less than two weeks from today and with this back, couldn't do it.
What do slightly elevated IgM and normal IgG sound to you? The levels have stayed the same for six months.
Can you explain what VlsE and Opsc in the follow up might mean? I was thinking if Rheumatic arthitis should be tested. I heard it can cause IgM go up, (but ESR would probably go up too?)
Thank you again for your help and have a nice day!
Originally Posted by jenj770
I would definitely stay away from a lumbar puncture! It's very painful, dangerous and completely unnecessary. Lyme is diagnosed by an LLMD (lyme specialist) primarily by clinical symptoms. A Neurologist is not the person to see to get this diagnosis. Any specialist, other than a lyme specialist, is not trained in proper diagnosis or treatment of Lyme Disease. Folks waste a lot of precious time going to these doctors and heeding their advise. In the meantime, the infection (if present) is growing ever stronger, which means it is also becoming more difficult to treat. Read the post on the top titled "Lyme Newbies". You need to try to find a Lyme Literate Medical Doctor soon and this is not always easy to do, depending on where you live. I hope you can persevere and find the help you need.
Also: the test you need should be done at one lab - Igenex in Palo Alto California