Soooo Confused

I am so confused right now. From everything I have read, I should be going to a LLMD, my doctor wants me to go to an infectious disease and an orthopedic doc to see if there is any bone deterioration. should I cancel my appointments with them or go to all of them. Thanks to help of all of you I found help in the state of Florida and I could make an appoimnet with an LLMD just 1 hr away from me. That appointment with the LLMD though is 2 months from now and my Doxy runs out in 1 month. Don't know what I should do. Helppppp

I'm pretty confused too. My PC diagnosed me with lymes after going from dr to dr for more than 20 years. I did 1 months of doxycylcline (sp). I went my neurologist with all my lab results in hand and he said no, you don't have lyme. He then referred me to a rhumetologist to verify. She said my lab reports only indicate recent infection because only the IGM is positive and not the IGG, which means in her opinion I do not need anymore treatment. I have had progressive neurological deteriation, polyneuropathy, progressive hand weakness, myotonia, reflux, barretss esopagus cervical spondylosis myelopathy, hypothyroidism and the most recent diagnosis of hyperkalemia...................all that have progressed one after another for more than 20 years with no diagnosis or reason. I live more than 5 hours from the closest lyme clinic, that I have been able to find, which is located in NYC. I have contacted people on different websites to try to find a doctor closer. Over the years I have lost my confidence to drive into NYC and I have no one that will take me. I can not afford to travel by train back and forth. So what do I do now?

Hi,

I am also in Florida and am working with a new LLMD in the Tampa area. He is working with the LLMD in Mt. Kisco because I went up to NY to see that doctor and got the two of them hooked up with one another. I have never seen a doctor so excited about going to a seminar before, but my Florida doc is going to the ILADS conference in Toronto just because he has ONE patient who has Lyme - me - so he can more effectively treat me. He has studied the ILADS treatment guidelines and everything the doc in Mt. Kisco recommended. I don't know where you are in Florida, but if you are nearer to Tampa I would be happy to share his info with you. I am sure they can get you in a bit quicker and I really love this guy, which says a lot because I generally distrust and dislike MD's. He has many years experience in mainstream medicine, but has moved into alternative and uses prescriptions when really needed, like abx for Lyme, so you get the best of both worlds.

Also, from my own experience, going to all of the specialists is a waste of time. They have done nothing for me but take my money. But you should also do what is going to help you feel more comfortable, and at least they will rule out the possibility of anything else.

Whatever you decide, I wish you the best. We all know how hard it is to live with the disease and manage treatments.

When I called my new doctor in NY about how sick I was they got me in the next WEEK. My previous doctor in PA, made me wait 8 WEEKS!

I am unable to e-mail because when I click on the letter below the name it defaults to outlook express, which I don't know how to set up. Can I give my e-mail here?

I think I have my profile set so you can e-mail me as I can not figure out how to e-mail you. Thanks

Oh I was trying to talk to Traveler. You had mentioned for me to try to e-mail except I have not been able to do it because of it defaulting to outlook. walkafineline, I tried to hover over the envelope under the name but no e-mail address comes up.