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I cant find a LLMD in my area...my dad (who pays my medical bills) doesnt seem to believe me about the possibility of lyme, so when I asked if I could travel to another state to see a LLMD, he sure didnt act like he was going to let me do that.

I've been diagnosed with MS, but when I went to get a second opinion from the MS Clinic, the Nurse Practitioner (surprisingly) listened to me when I asked if I could have a Western Blot for Lyme done last week. (my regular doctor did an ELISA which was negative)

The reason why I'm suspicious that I might have Lyme is because in late 2000 I had at least three tick bites AND a rash that appeared in late December or early January 2001. I went to my regular doctor for the rash, and they told me that it was just an erythematous rash and gave me hydrocortisone cream to put on it. (I knew nothing of Lyme back then, so I never mentioned the tick bites I had)

I also had a tick bite when I was around 10 or 11 yrs old.

My dad is a nurse, and he thinks I'm just in some sort of denial about the MS diagnosis...which may or may not be true right now, but I sure believed that it was MS until I had that Western Blot last week. I believed them that the WB was negative until I got a copy of my medical records yesterday and saw that it registered two bands, 23 and 41 kda.

I dont know how to ask my regular neuro about having more testing of some sort for Lyme...and I am pretty sure the MS neuro at the MS Clinic wont do anything about it because when I saw him a week and a half ago, he told me that Lyme is overrated, that it's over diagnosed. Both of those neuros have basically told me that Lyme is so rare that it barely ever happens to anyone.

The only person who I think might even try to help me would probably be the nurse practitioner that I saw at the MS Clinic...because she did that WB test on me without doing an ELISA. I'm just so stressed out that I think if I were to ask her for help, I wouldnt be able to ask in a coherent enough way that she would take me seriously.

I'm feeling like I'm being treated like a hypochondriac. I felt that way last fall when I got optic neuritis and all the doctors I saw said "No. You dont have MS." But then, I had finally gotten my regular doctor to do another MRI of me (on the spine) because I have bad back pain, and he did the MRI to see if I had a slipped disc or something. (he had them use gadolinium because of the possibility of MS) They found lesions on T12 and C4 and that's what got me the MS diagnosis.

I just dont know how to ask a doctor to further investigate the results of the Western Blot test since it's got two of the bands they look for in Lyme.

I have a Western Blot test kit from IgeneX, but I cant find any doctors here in town to draw the blood and send it to IgeneX. (the other WB was sent to some lab in Utah) I dont currently have the money to travel out of town to see a Lyme specialist. (I havent been able to find any specialists anyways)

I've posted in one other Lyme forum, looking for help, and all I got were nasty messages from a Lymie who kept telling me that I wasnt listening to her about finding a LLMD. It's not that I'm not willing to see one, it's that I cant find any...and I cant even get a doctor here to even refer me to one.

I just dont understand why no one will listen to me about this. I guess I'll just sit around and watch Stargate reruns until my nerves all turn to jello and I die.
Hi there, I'm sorry for all of your troubles. I think the only nice person you've met recently, willing to help you out in the slightest, is that nurse practitioner.

I have only just started seeing an LLMD. This after my neuro was only willing to run a Lyme titer, just to humor me. I skipped getting the test done through her, as I felt it was a waste of time. However, I ordered the kit from Igenex anyway, because at first I wasn't sure if I was going to let her be the dr to read the results for me or not. I ended up finding a LLMD thru the internet.

Actually, here's how it went. He gave me a script for general blood work, to see what other chronic conditions I may have had first. He also included the ELISA and Western blot. I went to a particular lab (you can go to any lab- not just a dr's office), and had them do the blood work. The test came back negative. Only one band showed up, and it was negative. :dizzy: So then he drew one vial of blood, (running only a IgM western blot), which cost me $95. That came back positive. I also did a 3-day urine test, but those all turned out negative for some reason (a waste of $195, if you ask me LOL). Point is, for $95, you can ask a doctor to run a IgM western blot on you. I think it's the same for the IgG (a lot of people apparently never become IgG+, even if infected years prior. I think I was infected at least 10 yrs ago- although possibly reinfected/exposed at some point). Igenex doesn't bill your insurance, though, so after you send them the money and they run the test, they'll provide you with a form to send to the insurance co for (hopefully) a reimbursement.

I just can't believe that one dr told you "oh it's just an EM rash- here's some cream". :eek: What your dad may not realize is that you might not have MS- it might actually just be Lyme. Of course maybe it is MS, but it's definitely worth it to rule out the Lyme - my mom was diagnosed years ago with MS, but after all my reading, I convinced her to get tested for Lyme. Especially since I have it, after years of wierd symptoms and thinking it may have been MS for me as well.

Best of luck to you. :)





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