Lyme and Nervous System

Hi.  I'm new to this sight.  I've recently been diagnosed with Lyme and a co-infection of Bartanella.  I go for a brain spect scan tomorrow.  I've read these aren't necessarily reliable...has anyone had this done, and has it provided good information leading to better quality care?  Also, my symptoms seem to deal more with the nervous system, endocronology end...does anyone else have palpitations, weakness, hormonal imbalance, feelings of being overwhelmed and completely stressed when there is no reason to feel this way?  Just getting my daughter off to school can leave me shaky, weak and feeling overwhelmed.  I have to move very slowly at times.  My palpitations come mainly in the night, first thing in the am.   Lastly, I live in Southeastern PA - I'm looking for additional doctors (besides the current one) who treat lyme...just because he is so far from me.  Does anyone have any suggestions?  Thanks!  traclyn

[Jenny Wren]

The only one I know is Dr Joseph, or Dr. Swami in Hermitage.  How long have you had Lyme?   What type of bloodwork did you have drawn?  ELISA or IGENEX?  My next step is a LLMD, can't take feeling like this everyday.  I have heart palpitations also, this started when all my other strange pains started.  Good luck!!

[winfree]

Hi. I've had lyme in nervous system for 6 years. Trust me, symptoms can get much worse. I also got severe motor, cognitive problems, sever depression, and extreme sensitivity to sensory stimulation, which kept me very isolated socially. The fatigue makes things worse, so allow yourself to do less, rest, rest, rest. What you describe is typical for early on. Get on antibiotics asap. Spect good idea. Good websites for treatment protocols: , www.ilads.org>. Blood tests for lyme extremely unreliable. I found out the hard way - delaying diagnosis for 3/12 years. It should be a clinical diagnosis. I saw Dr. Fallon at the Lyme Disease Research Center at Columbia Univ., NY, NY. He said some never have positive lyme although they have been very ill with it for years, or it becomes positive after effective treatment (as was my case). Spect is good - shows hypoperfusion occurring in brain.
I think the first website I gave has list of lyme literate dr.s. You are in heart of lyme area. I tried to get appointment at lyme clinic with univ. in Philadelphia (U of P?) and got response that they don't recommend antibiotics for chronic lyme and therfore did not want to see me. That wasn't what I was asking them for. Yes, dr. choice is critical. First find out what you can online so you can be advocate for yourself.
This is a very serious disease which be as debilitating as congestive heart failure, research shows, so stay on it. You may want to find a compassionate counselor. I am slowly improving after 1 year oral antibiotics, and 5 months IV infusion of ceftriaxone. It is the best for neuro lyme. My improvements only started with it; it ended 13 months ago. Dr. Fallon told me not to expect changes in brain SPECT for at least a year. I am scared at present as having eye problem most likely related to lyme. I don't mean to frighten you, but insist on the best treatment up front.
Will be thinking of you.

[traclyn]

Hello.  Thank you for your response.   Where would we be if we couldn't get good advise from those who have been there already!  Thank you for the info.  Are you not recommending the clinic associated with U of P?  Or did I misunderstand and it may be a good back-up source?    I had good news from the tech who did my brain scan at Chester County Hospital in W. Chester PA...the doctor who I'm seeing requested I have it done there because of the Nuclear Physician who reads the scans.  He is one of the top 10 in country.  The tech told me he reads (above Doc) over 250 scans a year and he is lyme literate.  The tech told me he has people from all over the country (TX, NC, MI, etc.) come to this hospital to have it done and read by the Nuclear Phycian.  So, I'm glad for this news...Hopefully this will be helpful to someone else as well.  You can see my progression of lyme from the other response to my post.   Again, thank you for your reply, and my thoughts and prayers will be with you as well.  Blessings, Tracy

[laughingman]

What eye problems are you having?

[winfree]

Eye problem - Uveitis or irisitis, anterior portion. Currently in wait and see mode asdr. thought it was improving. My other nervous system symptoms  just blew up in about 3 weeks, and I don't want that to be the case with eye, as it has potential to cause loss of sight. Medhelp dr.directed me to best website about it
Of course I am the only one concerned about relapse or having new symptom. I don't believe from what I've read or seen on dr. conferences' DVDs that it can ever be totally eradicated when one is as ill as I was. If my eye doesn't improve and no one is willing to try antibiotics I will find somewhere in lower 48 to go to. You know, the 2 sides of the issue as further antibiotics would not help, no such thing as chronic or post lyme or relapse, etc. versus those who believe it and try things. I get really discouraged knowing I am not well yet, my brain may be permanently damaged and I may not be able to get off meds for it, and fear that another ugly symptom, as eye, will not be kept in check. More than you wanted to know.

[winfree]

My comment just posted was answering laughingman's question, so I don't know if he will get it or not.
I don't know anything about UP clinic. My son lives in Philadelphia so I thought I'd give it a shot, but they did not want to see me. Might be good for new diagnosis, but sounds like your dr. may be good with lyme. Radiologist - lyme -great!! I'm in AK so no ticks here, and no one really knowledgeable. My dr. has done an amazing job going to conferences (and lets me see DVDs), but she is alternative medicine (and conventional) and does not like antibiotics. Tried oral ones for a year before the IV. Without the IV rocephin I don't think I would be alive today.
Good luck, and let me know direction of your dr.

[laughingman]

I having visual snow and neurological symptoms but haven't been tested for Lyme yet that's why I ask. You need some anti-inflammatory drugs and antibiotics asap. I would be weary of steroids because they are supposed to make Lyme worse.

[LittleLori]

The SPECT scan when done by someone who is trained to look for "lyme lesions/damage" is very reliable. The test itself is reliable, but when specifically looking for Lyme damage, someone trained is best. It can find just about anything, but if they don't know to look for Lyme damage, you may end up getting diagnosed with MS (which many of us have been, when it was actually due to the Lyme).

Hopefully you come back and post the results.

To me it sounds like your LLMD is worth the drive, especially when he/she was very quick to get a SPECT done. I'd rough the drive, personally. :)