Question: I recently saw a Lyme MD Specialist, who diagnosed me with chronic LYME disease. My tests were negative, but he said I had all the classic LYME symptoms(relentless headaches, brain fog, lack of concentration, joint pain, anxiety etc.,) I 1st tested positive for Lyme in 2009 , and took the Doxycycline then, but as time went on I continued to have symptoms. I got another bulls eye rash on my leg this past June(which intensified my Lyme symptoms even more)-for which the LYME doctor agreed with me that it was a tick bite as well. I am on a holistic anti microbial program for the LYME, which my NP has put me on, and it seems to be working OK. I went to a neurologist, who told to do a Lumbar Puncture(LP), in order to see if the LYME bacteria was effecting me neurologically. I had the LP(NEVER AGAIN), and the results for LYME were inconclusive. The big problem is I have had these DEBILTATING post LP headaches for a month-WORST thing ever. The LYME headaches are really bad, but the epidural headaches are unlike anything you could imagine(if you've never had one-you're lucky). I went back to the ER, and they did a Head CT(normal)-a blood patch about a week after the LP(not much relief) and a brain MRI(nothing out of the ordinary), and we are now discussing a 2nd blood patch. Unfortunately, I developed a respiratory infection(headaches, yellowish phlegm and bad cough), for which I am taking my last Zithromax pill today(I do not like taking antibiotics, because I have a candida overgrowth issue), and thus my doctors thought it reasonable to wait on the 2nd blood patch until the sinus infection is over with. I now also have the lower back pain that I had when I 1st had the LP(those initial back pains went away after about 3 days), which have come back, and this time the pain is radiating into my right leg as well(the back pain gets pretty bad after I sit for a while). In addition , today my neck is very stiff, and I very fatigued. "When it rains it pours." I am taking Zithromax as I mentioned. Protonix for the lower, but mostly upper abdomen discomfort and Gaviscan liquid for the intermittent NAUSEA that I have had since the LP; The Neurologist gave me Fioricet for the headache pain, which I take only as needed. I am on Clonidine for physical anxiety; a couple of weeks ago the doctor in the ER gave me Percocet for pain(I took the 1st pill two nights ago for the back and leg pain). I am trying to drink a lot of fluids, and I do not have a fever-although my head feels like it is 1000 degrees. My Questions for the NEUROLOGIST are as follows:
1) What are your thoughts about me having these post LP headaches after a month-I've heard it's not typical, but it's not unusual. I've been told by the doctors many times this this Epidural Headache WILL at some point go away-but it's not much solace when you are going through it(please weigh in hear).
2) If I decide to, is it OK and effective to do a 2nd blood after this length of time.
3) Do think that my current respiratory infection has anything to do with the LP. Furthermore do you think that the resurfacing lower back(because the location and pain is similar to when I had the LP) and now leg pain(and the current stiff neck) that I am having may be indicating some type of infection stemming from the LP(or the blood patch). One doctor I spoke with said that if I was going to have a spinal tap infection, it would have happened pretty SOON after the procedure(it's been a month now). Again, I do not have a fever-99.1 being the highest to date.
4) I have had allot of nasal discharge for the past week-I understand that it is probably from the sinus infection, but it is possible that the clear looking fluid is CSF draining out of my nose(and perhaps my ears as well)
Once again, I am on the ZPack, for respiratory infection; Protonix, for lower, but mostly upper abdomen discomfort; Gaviscan liquid for the intermittent nausea I 've had since I had the LP. Fioricet as needed for LP headache, and Percocet ONLY when really necessary.
Please answer these questions as thoughtfully and as detailed as possible, as I am in a QUANDRY as to what to do next(I am tired of doctor's offices and hospitals). Also, if you have any other observations from my explanations, please do not hesitate to comment, and or add any of your additional insight.
Thanks,
XXXX

Thanks Doctor for your timely and thoughtful response. As this continues to be a rough time for me, I am relieved by your confirming explanations regarding the post LP symptoms, the current respiratory infection, and the nasal drainage. My concern is still this lower back ache(which is not quite as bad today, as it was last night-I did take a Percocet for the pain) that has returned a month after the LP, and is now also causing pain in my right leg-mostly in the CALF and ankle/foot area, as well as a my buttoch. I believe this reoccurrence of the lower/right leg pain is from the LP, because I have not had this type of back/leg pain before, and I have heard and read about people who have had this happen to him after the their LP(back pain coming back). Is this something that should eventually resolve itself, provide it is happening as a result of the LP. I spoke to the on call neurologist(when the pain first demonstrated itself)the other day, and he said it might prove wise to get an Lumbar MRI to see if they can identify any infection or CSF leak(he did acknowledge that this resurfacing of the back/leg pain is probably as a result of the LP-although he thought that an infection was probably unlikely
at this point-one month after the LP procedure). I spoke to my neurologist about this, and he did some blood work on Friday, along with a lumbar XRAY to start-no results yet(and then perhaps a lumbar MRI to follow). I am extremely fatigued this morning, as well as having a feeling of generally be out of it-could that be from the Lyme, respiratory infection and or the medication-I know that Percocet and clonidine may cause severe drowsiness(or is it a combination of everything I am going through). Please advise. Thanks, XXXX

As a reminder, I had an LP over 4 weeks ago, and I am still not feeling well. I had some more blood work done yesterday, along with another CT Head scan today and a neck XRAY. According to the doctors, everything came back normal from those tests. Again, I am REALLY not feeling good at all. I have a constant headache(which is not completely subsiding when I lie down flat, like what normally has occurred with the post LP headaches), a back ache(with pain in my legs)along with a stiff neck. I also have a rash(which started about 3 or 4 days ago) in my upper neck area which seems to be getting worse-but so far no temperature. BTW, My LP was OK-apparently everything they tested for in the LP came out OK.(I so wish I never did the LP). I also just finished a course of Zithromax on Saturday(for a respiratory infection-which has now, according to my ENT today, been cleared up) My question is this: with my existing symptoms-is it possible that I have some type of meningitis-or infection now at this point(after having the LP 4 and 1/2 weeks ago and it didn't show up then). I spoke with one of the neurologists(the one that looked at the Head CT and neck XRAY today), and he said it was unlikely that I have meningitis at this point, but I am somewhat concerned. It seems like I have the meningitis symptoms(except for the no fever)as I feel so crappy, and all I want to do at this point is lie down. Please advise. Thanks XXXX

Thanks for the quick response. I am relieved that you do not think that what I am going through for the last couple days is some kind of meningitis since the LP from 4 1/2 weeks ago.(BTW-would the CT of the head that was performed today have revealed if there was any type of brain infection). Are you saying that since I didn't test positive for meningitis from the LP, than it wouldn't be possible to test positive only 4 1/2 weeks later. My neurologist is scheduling a lumbar MRI to see what is going on there. This pain in my right lower back and primarily in my right leg is pretty bad, and it something I have only had since the LP- the pain radiates mostly into my right calf and goes all the way down sharply into my foot( dull-throbbing pain in the thigh and calf, and a stabbing-tingling sensation in the foot. Do you think this feeling in my lower back and leg will end when the rest of the post LP symptons subside, since it all is as a result of the post LP complications. I know the Lyme may be complicating some of these issues, but things have definitely gotten messed up as a result of the LP. I will await your response. Thanks, XXXX