My Genreal MD diagnosed my brain MRI as MS and I went to the Neurologist last Friday. I think I got lucky with her, she's not ruling out Lyme just yet agrees that Lyme can cause these type of brain lesions. If that's what it is she treats it with IV antibiotics for a month, so at least she seems educated on the necessary treatment of late stage Lyme.
So more test to come...
Had more bloodwork done, waiting on those results....
Have to to for two more MRIs, spine and neck and then if that's not conclusive for MS...
Spinal tap, she stated this would detect Lyme but I'm reading conflicting reports on what I've found online.
Does anyone have any info or personal experience of having Lyme and it not showing up in a spinal tap??
I'm a bit nervous about this procedure and personally don't want to get it but if it can definitely rule it in or out I'm willing to go for it...
It is rare for lyme, if any bands, to show up in spinal fluid. The percentage is very low-I don't know what is the rate.
Mine did-I had two lyme specific bands in my spinal fluid along with other nonspecific bands. My neuroloigst did not like to see even one lyme specific band lin spinal fluid so I am on Rocephin IV right now-for 28 days.
I did had extensive neurological tests for MS and other "relasping" neurological diseases-they were all negatives. I had chronic low WBC, recurrent fever and others that cannot be explained by typical neurological diseases.
I had two spinal taps in my life. First time, no bands show up--it was clean. Second time, it shows up.
So if you end up having lyme specific band in your spinal fluid, then it is clear sign you are infected with something, and it is swimming around in your brain--that's my own humble opinion.
Lyme don't live in spinal fluid in any great numbers, so it's not a test to rely on to diagnose (or to rule out) Lyme.
Lyme specialists don't generally look to spinal fluid to diagnose or to rule out Lyme. Here is a paragraph from the 2008 ILADS guidelines, posted at ILADS [dot] org (emphasis added):
"Spinal taps are not routinely recommended, as a negative tap does not rule out Lyme. Antibodies to Bb are mostly found in Lyme meningitis, and are rarely seen in non-meningitic CNS infection, including advanced
==>> Even in meningitis, antibodies are detected in the CSF in less than 13% of patients with late disease!
Therefore, spinal taps are only performed on patients with pronounced neurological manifestations in whom the diagnosis is uncertain, if they are seronegative, or are still significantly symptomatic after completion of treatment. When done, the goal is to rule out other conditions, and to determine if Bb (and Bartonella) antigens or nucleic acids are present. It is especially important to look for elevated protein and white cells, which would dictate the need for more aggressive therapy, as well as the opening pressure, which can be elevated and add to headaches, especially in children."
In your situation, I would find a Lyme specialist for a second opinion, probably before proceeding with the neurologist. The neuro does sound remarkably open-minded for a neuro -- but that may not be saying much.
I'm NOT medically trained, but in your situation, I would get copies of all test results (I think by law they have to give them to you ... and it's a good habit to always get copies of ALL test results going forward, because Lyme docs can often see patterns in past test results that nonLyme docs don't perceive.
Have you seen the term LLMD? It's patient slang for a "Lyme-literate MD", meaning one who thinks bigger thoughts about Lyme and its many miseries. The two specialties LEAST likely to have LLMDs among their ranks? infectious disease docs, and neurologists. Ironic, and sad, eh. They should be at the forefront of hammering Lyme, but the official positions of those two specialties is that Lyme is hard to get and easy to cure.
Uh, .... not.
You could go ahead and see the open-minded neuro, get the tests done that she orders, and then sneak off and go get a second opinion from an LLMD, being sure to take copies of the neuro's test results. That way you are covering all the bases.
I see you are in NJ, which is a very hot spot for Lyme. I just google-searched
llmd new jersey
and got a lot of interesting leads.
Also you can send an email to
contact [at] ilads [dot] org
and tell them where you are located. They will send you names of LLMDs who are members of ILADS, International Lyme and Associated Diseases Society, which is the main voluntary group for LLMDs. The website also has information you might find interesting, under Dr Burrascano's treatment guidelines. They are a few years old, but are still worth reading for an LLMD's point of view on Lyme and its associated diseases.
In your situation, I wouldn't tell the nice neuro I was going to see an LLMD, because it might cause her to turn against you, bec. nonLLMDs are often afraid of being accused of committing malpractice by knowingly treating a patient who is also under the care of an LLMD using 'non standard' treatments. All this sneaking around is ridiculous, and I have always been very open with all my docs, so that they know everything there is to know about my health, since it's all linked together ... but when it comes to Lyme, I learned to be careful who I told I was seeing an LLMD. I got some really bad reactions from other MDs who think LLMDs are all quacks and committing malpractice. Little do they who who is doing the actual quackery. Sigh.
Yes, my MD did the WB which of course came back negative. If I have Lyme I can trace symptoms back about 15yrs, so the little buggers I'm sure are well hidden by now.
I did see a LLMD before I even got the brain MRI and neurologist appt. Got her from the ILADS. She ran other blood tests and they came back neg except for something in Band 41 IgG showing abnormal but she doesn't confirm it either, said could point to old lyme but not conclusive and it's up to me if I want to pursue treatment, which I am.
I'm been on antibiotics for over a month and was feeling like crap, I'm assuming herxing and actually started to feel better this week :) Seems like Lyme to me...
I did tell the neurologist about her and she contacted the LLMD and has the lab report, which I also got a copy of :)
I do have another LLMD, thanks to you guys previously suggesting that I should do this :) He was suggested by a friend of the family. I looked him up and rave reviews from people, especially about his caring attitude for his pts and he's very involved in the Lyme org and much closer :)
So I think if the MRIs of the spine don't conclude MS I'm going to set up that appt with him before the tap. Of course he doesn't take insurance and I'm trying to get the diagnosis with someone that is on my plan. I've already paid too much out of pocket, which really irks me when I have health insurance, won't even go there!! If I have, I have to, it's all worth it.
At this point I don't care either way, Lyme, MS but just want make sure I get the correct diagnosis, so I get the correct treatment and fight whatever it is. I've seen that the MS meds are no good for Lyme and I'm not wiling to mess around with my health anymore.
If groups and people like you guys were available 15yrs ago I might not be in this situation, just took my docs word back then, he told me I was just depressed, ugh!!
I'm so glad people like you are here for information, support and most of all, back up so we don't just take the docs words. But soooo not because you are all dealing with this crap too. Hope you are doing well, your advise means so much!!
I am so glad you are digging deep on this and looking for good answers! I think if a late stage Lyme patient is going to get diagnosed and treated, then it will happen when they pursue it themselves. Most doctors just don't know enough about it to recognize it.
I would not bother with the LP. I had one and it went badly. Thanks to some previously unknown arthritis in my lumbar area, it took 6 tries to get through. For most people, it is no problem, but knowing you only have a 13% chance of a correct positive, it just isn't worth the risk to me.
However, many doctors will require this before diagnosing Lyme. Unfortunately, they believe it is a highly accurate test. I was told by 4 doctors that I didn't have Lyme because I was negative in my CSF. What they don't know is that it is highly accurate ONLY if there are antibodies in the CSF to find. Most don't have such antibodies.
If you are diagnosed, it is highly unlikely that a month of abx will cure you if you have had it for 15 years. You definitely need to find a good LLMD to treat you properly. Sounds like you have done some good homework!
Have you been tested at IGeneX yet? You could also have a coinfection complicating things.
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