I am still waiting for an appointment for lyme doc. Igenex did come back positive for lyme with about 4 bands. My question is about a lumbar puncture. My neuro wants me to get one to look for any inflammation. Should I wait to see the lyme doc and see if there is something additional he would test for in the lumbar puncture or will they probably just do a standard test for everything? I am not looking for and neither is the neuro, looking for lyme, he actually is not thinking lyme, in fact he does not even want to deal with it. I just basically keep him for now to do MRI's and things, mostly maintenance. Just curious if lyme docs have use for the lumbar test, even though I know it is not that accurate for lyme. Jocelyn
Posted by LymeXtu (Member # 24590) on :
There were some recent posts about this ( last month or so ) I don't personally know anything about these but seems EVERYONE knowledgeable on here says DO NOT get one! I would for sure wait till you see your LLMD.
Posted by dmc (Member # 5102) on :
I wouldn't do it. Had one yrs ago...nasty. Well, if I was in a coma I'd maybe let them do a lumbar.
Posted by sutherngrl (Member # 16270) on :
I wouldn't do it either! For many reasons!
Posted by Keebler (Member # 12673) on :
- Look up how much this will cost you or your insurance. How much goes to the neurologist and how much to the hospital (where the neurologist works)?
What kind of bonus does the neurologist receive for referring you for this expensive and potentially painful procedure - from which you could have migraines for up to two weeks afterward?
And - since lyme is one of the most toxic infections known to man - well, just what bleep else are they looking for that could possibly be any worse than lyme itself?
Other tick-borne infections can be tested in other ways, as can other chronic stealth infections.
You said your neurologist wants you to get this "to look for any inflammation" - is he out of his mind? You have lyme, of course you will have inflammation. You don't need a spinal tap to tell you that.
Some say they need to check cranial pressure in case it's too high. Well, you know what makes cranial pressure too high: infection. Treat infection, pressure decreases.
Now, there may be some other conditions where a spinal tap is helpful but "just to look for inflammation" - he means "to infuse his bank account."
Or - to make you pay for being what they label a "difficult" patient - or to prove you don't have lyme by still running a lyme test on the CSF and then declaring you free of Bb when the inferior test does not show Bb in the CSF. That way, treatment will be denied, like, forever.
Seriously, this doctor will get you no where fast. I do hope you can find one who is knowledgeable. -
Posted by Lymetoo (Member # 743) on :
LLMD's have no use for it whatsoever and neither do I...only if my very life were in immediate danger.
Why would a neuro use an LP to check for inflammation?? Duh.. all lyme patients have inflammation.
Posted by bigstan (Member # 11699) on :
Had one done and in my case it confirmed the infection was in the CNS. It showed no Lyme however it did show elevated protein. I tell you I worried my *** off, and all for nothing. It was easy, no pain, a little pressure, no headache.
I think it all depends on the doctor doing it. The one's that do it the most are ER doctors, so they no how to do it with great care. Or you could do it under fluoroscopy if you have great concern.
If it needs to be done try not to let it bother you too much.
Posted by Keebler (Member # 12673) on :
- If, as the doctor says, he's just looking for "any inflammation" it does not need to be done just to confirm that. It's a huge expense even if it goes well, which is not guaranteed. But even if it would go well, there is no point for such a expense and stress on the body.
Even going to the dentist is stressful; there is no way a lumbar puncture (even with the best case scenario) would not be physically stressful. Stress is very hard on the heart of a lyme patient. If not necessary, why put one's body through that?
And who pays for it? Why, to confirm inflammation that you already know you have? To put as risk the already positive dx of lyme for one that would likely negate that with a faulty test? -