I am having a spinal tap within the next 2 weeks and my ID is almost certain we will be following with IV treatment. What can I expect from both? Any thoughts would be appreciated!
Posted by Hoosiers51 (Member # 15759) on :
I read recently that spinal taps only catch 10% of Lyme, in people that test positive in bloodwork.
Some doctors still think they are worth it, but that statistic is something you may want to look into online, or ask the doc about.
How long have you had Lyme? Have you already had positive bloodwork?
If you have had it for awhile, one month of IV may not be enough....those cases can become more complicated to treat.
More info about your symptoms and how long you've been sick would be helpful in telling you what to expect.
Some people benefit from IV, some benefit from other oral drugs. If he/she is willing to give you IV though, I would take it.
ID doctors (99% of them) have a different way they treat Lyme, as opposed to the doctors who belong to groups like ILADS that many of us on this website see. So in other words, there are two different points of view on how Lyme should be treated, especially in the latter stages.
If your ID balks at things you hear on this site, that would be why. They are used to treating simple cases of Lyme, since the majority of Lyme cases they see day-to-day are more simple. So it just really depends on what kind of condition you are in. ID's usually treat for less time.
Posted by Pinelady (Member # 18524) on :
Igenex does SF testing also. It case you want to send them some too.
Posted by sutherngrl (Member # 16270) on :
Just an observation; but it seems that many ID doctors use the spinal tap to rule Lyme out, since it is usually not found there. This is most ID docs agenda.... to rule out LD.
I hope your ID doc is a LLMD(lyme literate medical doctor)!
Posted by wendihk (Member # 20554) on :
I have heard that having a spinal tap is like dipping a net into a pond. Then, when you come out with no fish saying "there's no fish in this pond"
I was almost pressured into a spinal tap by an ID and balked at it. They are typically negative but I think she was looking for fuel to go to my insurance company with to get IV approved.
Definitely not worth the possible extended pounding headache I hear people get.
Posted by Snailhead (Member # 18091) on :
Suthern & Wendi are correct. I wouldn't have another tap if you paid me. My (prior) neuro had no prob. dxing me with MS with no eviidence of "O" bands, but turned around and used that same LP as his "proof" I didn't have Lyme because it was negative!
7-10% chance of showing Lyme DNA in spinal fluid is what I have read. So a 90-93% chance it won't show up even if it is there. It isn't worth it, in my opinion. I've had two, and both times had to have the blood patch to heal the headache.
That's four times people have punctured my spine. No mo.
Posted by mmbl (Member # 20642) on :
I have already tested positive for 2 of the 3 bands I was tested for. The reason for the spinal tap is because of my menigitis symptoms and my cognitive complaints. My doc is preparing for IV treatment in any event because my Lyme was totally unresponsive to the oral antibiotics. My tap is scheduled in 2 weeks, I don't really see a way out of it. I have severe complaints and he really wants to get the fluid tested for central nervous system damage. If it was just for diagnosis I could see kicking it, but he's not looking for a diagnosis, he's looking for damage.
Posted by dmc (Member # 5102) on :
I didn't know they could find "damage" from spinal fluid. Thought MRIs found the brain and/or spinal cord damage.(lesions)
Will be neat to hear what he finds. Keep us posted.
Posted by mmbl (Member # 20642) on :
Just wanted to update. I had my spinal tap yesterday. It wasn't horrible, they did it with me laying on my stomach and used an xray guide. I was pretty sore and pretty much just laid down the rest of the day. My back is a little more sore today, but luckily I don't have any headaches and hopefully I don't get any. I'll post if and when I get any results.
Posted by DaveNJ (Member # 17362) on :
MMBL,
be careful...my headaches started almost 40 hours after the procedure and lasted 4 days...spend the day on your back no matter what....this procedure proved pointless for me just another negative test.