I definitely have lyme, CDC positive, blah, blah, blah. Been on and off treatment, good and bad, seeing a llmd, etc. No questions about any of that.
However, saw a new neurologist last week (per my PCP) who pretty much said I have MS. Sent me for an MRI of my brain and cervical spine--with and without contrast. Told me to also prepare myself for a spinal tap and was very surprised to learn that I had previously declined one.
Also saw my llmd last week who believes all of my symptoms, including the crazy neurological stuff, is lyme. She did tell me that she wouldn't be surprised if my MRI came back showing lesions because of the lyme. Confidently told me I did not have MS.
Got the results of my MRI back--completely NORMAL. No lesions, nothing abnormal. Definitely an answer to my prayers, but now I'm just as confused.
Without lesions, they can't give me a diagnosis of MS, correct?
In regards to lyme, if I'm having all of these neuro symptoms, why don't I have lesions?
I'll be completely honest, I wasn't expecting normal results.
Thoughts?
Posted by Lymetoo (Member # 743) on :
I would think you're in the clear....(??)
read what lpkayak posted about MRI's and MS.. this may or may not help you
- Myelin damage does not always show on MRIs. Myelin damage is common in "MS" and lyme.
And, there are so many whole body damages from lyme. Anyone who thinks a clear MRI documents health is sadly mistaken. Sadly.
MRIs do not even come close to seeing all that can be amiss. No one test does. But WE do. Our very bodies tell us when all is well. We know. We don't always need a picture.
Topic: Could MS be misdiagnosed Lyme? -
Posted by lpkayak (Member # 5230) on :
i have been told and seen it written to correctly dx MS you need 3 things: pos mri, pos spinal tap, and clinical signs
i believe the advice i got to tx lyme...not ms for as long as possible
the ms drugs can make you go backwards and if it is lyme you may never be able to get over it after the ms drugs(they make you feel better at first but then you crash with permanent damage)
Posted by tickled1 (Member # 14257) on :
I've had positive MRI and spinal tap. Is it dangerous for me not to be under the care of a neurologist? B/c I'm not at the moment and haven't been for awhile.
Posted by lymeinhell (Member # 4622) on :
I'm of the belief that Neuro's love to throw the label of MS around. I had 2 different ones tell me I presented like a lyme patient, then saw my Quest neg tests, said it couldn't be lyme then, and ordered MRIs done. I had the lesions.
They then wanted to do spinal to 'rule out' MS, which in my book, is BS. I said see ya, and ran to an LLMD.
Had I listened to them, I'd probably be dead by now. Instead, I am well and have my life back.
Posted by tickled1 (Member # 14257) on :
I was lucky enough that the neuro I was seeing said it's either MS or Lyme and wanted to see how I responded to abx which I did to some degree.
Now, this neuro is no longer practicing. Rumor has it though that she plans on returning with a focus on Lyme.
Posted by Keebler (Member # 12673) on :
- tickled1
You say: "I've had positive MRI and spinal tap."
Positive for which diagnosis?
You ask: "Is it dangerous for me not to be under the care of a neurologist?"
Well, assuming you'd not be here were it not for a lyme diagnosis (even if the above tests were positive for MS) . . . it's not the neurologists who know about treating lyme, but the LLMDs.
99.9 of the neurologists would not provide much guidance for a person with lyme. It's the LLMDs who know about treatment.
If you have a good LLMD, and if they think you need to see a neurologist for any reason, they can refer you to one whom they may look up to.
If that neurologist who at least thought about lyme is becoming ILADS educated, great. But be aware and VERY cautious about ANY doctor who just wants to see how you do on antibiotics.
They should be ILADS educated. This is not just some cookbook approach tossing about any old antibiotic.
Lyme - and the whole area of tick-borne and associated diseases - is s very complex SUB-PECIALITY, really. My guess is that most neurologists would simply be blown away and impatience with that complexity.
Be sure ANYONE you see will be ILADS educated, even if they have their own treatment methods for each patient (as they should).
They also need to have the freedom to practice. If with a clinic with others and bound by IDSA misinterpretations, that is not likely. -
Posted by tickled1 (Member # 14257) on :
The neuro is not the one that was treating the Lyme but was working with my Lyme doctor at the time. That Lyme dr. was not ILADS but since then I have been to ILADS LLMD's.
My current LLMD is very good and he said I may need to see a neurologist at some point. I guess I should just wait and see what he says.
I just get so impatient b/c it's so slow going. I can't tolerate any treatment b/c I'm a toxic mess. Can't seem to even tolerate what I should be doing for that. And appointments are so far apart.
Posted by DeniseNM (Member # 11182) on :
To my knowledge, a spinal tap is not 100% indicative of either Lyme OR MS. I have consistently refused to get them.
My LLMD looks at it like this: You can have Lyme (which looks like MS), you can have Lyme AND MS, or you can have just MS. I'm in one of the latter categories, no way to know which.
The ABC drugs commonly used to try and slow down the demylination are not all bad. The A (Avonex) is an immune system depressor. I was on that for 7 years before I found out that Lyme is underneath all this and I need a pumped up immune system. BUT - I stopped taking it for 2 years, then had an MRI and there were a TON more lesions. I can't say that I wouldn't have had that much more MS activity with the drug, but it appears to have done something.
So with my LLMD's blessing, I take Copaxone, which does not interfere with any other drug, nor does it dampen your immune system. statistically, it slows down demylination - no matter the cause (Lyme or MS). I found that my insurance will cover it because it's prescribed by a neuro. I use my neuro to get that and treatment for any other symptoms that could be MS. He knows about the Lyme, doesn't say it's not true, but just ignores it. Oh well, at least I get my meds!
Posted by tickled1 (Member # 14257) on :
Who's that country singer with MS? I know he said Copaxone put him in remission.