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Lyme or LP Headache? Anyone else?

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Old 07-22-2008, 02:05 PM   #1
Join Date: Jul 2008
Location: Eliot, ME, USA
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mcmanumi HB User
Lyme or LP Headache? Anyone else?

Hi, first time poster here. I was diagnosed w/ Lyme about 5 weeks ago and a few days after the diagnosis I had to go to the Emergency Room because of an increased fever, joint pain, headache, etc... While I was there they did a Spinal Tap to rule out any infection in my Cerebral/Spinal Fluid. The test came back negative. The Dr. warned me of the possibility of a Spinal Headache and at that point I could have cared less. The pain I was in from the Lyme was excruciating enough and I couldn't imagine it getting any worse. When leaving the ER my Dr. changed my 3 week course of Doxy to Amoxicillin (I couldn't stomach the Doxy). He also switched me from Percocet to Fioricet for the killer headache (I didn't like the feeling the Percocet gave me). The joint pain and fever eventually cleared-up within a couple of weeks and a few more visits to the Dr./ER (I believe I experienced the Jarisch-Herxheimer Reaction, according to my Dr.). During these few weeks I was unable to work due to the extreme headaches and being on the Fioricet to treat them (I have a lengthy commute and work around a lot of high-voltage and heavy machinery). My headaches got so bad that taking the Fioricet wouldn't even help them, so I went to the ER again to ask for a Blood Patch thinking that the pain was from a Spinal Headache. The Dr. agreed and I was given the patch. They said the relief would be immediate and I should be on a quick road to recovery. Well, no relief at all... I was back on the Fioricet and still out of work. I did attempt to return to work twice, but had to race back home because my headaches returned (both times I had to stop and vomit because the pain was so intense). Not seeing the light at the end of the tunnel, I decided to make an appointment with a Pain Specialist/Anesthesiologist at Mass. General. My thought was that maybe the Blood Patch was done incorrectly or ineffectively & that if anyone could diagnose and help a Spinal Headache it would be a Specialist at Mass. General. I was able to get an appointment very quickly and after consulting with 2 doctors at MG, they both believed that my headache was not a Spinal Headache caused by the Tap, but actually a symptom still kicking around from the Lyme. They also said that if I felt no relief from the Blood Patch then doing a second one would probably yield the same result, nothing. So, I left MG in the same amount of pain, but feeling a bit relieved that I could rule out a Spinal Headache. The doctors at MG stated that I could continue using the Fioricet and to follow up with my PCP and possibly see an Infectious Disease Specialist. Needless to say, I called my PCP to start the process of getting in the door with an Infectious Disease Specialist and to get a prompt refill on my Fioricet. Now at this point I had been taking (2) x Fioricet every 3-4 hours to stop the pain in my lower neck. It worked like a charm, but being what it is, I still am unable to go to work. Finally seeing that I had become addicted to the Fioricet, I decided to stop taking them and replace the treatment with 1000mg of Advil every 4 hours. It seems to be working OK, but I find myself having to lay down a lot more to relieve the pain in my head/neck. Also, coming off the Fioricet is horrible, ask my wife!! The first day I stopped I was so irritable I felt like crawling out of my own skin-it was something that I had never experienced before. I've been off the Fioricet for 3 days now and the withdrawal symptoms seem to be getting better. I have an appointment with an Infectious Disease Specialist this Friday (7/25). I'm not sure what to expect. Will he prescribe another course of Amoxicillin, say that the headache is related to the LP, or say that I just have to bite the bullet and self medicate until the pain is gone? I'm nervous because if he can't give me any answers then where does that leave me? I can't continue to be out of work (I've already missed 5 weeks) and my fear is that if I do go back to work and the headaches don't subside then I will have no choice but to go back on the Fioricet. The not knowing what is causing the headaches is what's really getting to me. If I had an answer maybe it would be an easier "pill to swallow" about having to take the time off from work until I feel 100%. Does anyone know if headaches/neck pain can be a long-term side effect of Lyme? Is anyone else out there experiencing the same symptoms as me? Any help/advice would be GREATLY appreciated. Thanks...

Last edited by mcmanumi; 07-25-2008 at 03:14 PM. Reason: Mistype

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Old 07-26-2008, 02:38 PM   #2
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Join Date: Oct 2007
Location: alpena, MI
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feelfit59 HB User
Re: Lyme or LP Headache? Anyone else?

Yep, headaches and neck pain are often symptoms of Lyme. I have had a Lyme headache EVERYDAY for 9 months. The only thing that I have found that helps somewhat is klonopin an anti-seziure drug.

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