as alot of posters i am looking for a llmd in the phila area. the best one as is dr b from ny who is no longer practicing. i recently read his manual or what ever its called. i want someone with his knowledge. i have had lyme for 15 years. i have all the viruses and other opportunistic infections that come with it. about a year ago is started to believe from hearing it enough that there is no chronic lyme. it was over a year before i even found someone who suspected lyme. i was never treated sufficiently because of insurance. anyway i went off all antibiotics for over a year now and have really declined. i can barely function. i get by day to day from bed to sofa. it takes alot for me to shop for even food. i moved to phila because my parents are here and my health is bad. i have spent weeks at their house because i couldnt even care for myself. they took me to the er after more than a week of unbearable headpain. the er wanted me to go to family dr. my moms family dr was booked so i saw nurse practicioner. she didnt like the meds i was already on. i had been to a fibro clinc a year to 6 months ago. they wont belive i have lyme but they know i have all the other viruses since i tested positive. the nurse practicioner wanted me to see a neurologist, rheumatologist, of course a psychiatrist and maybe a cardiologist. saw the neurologist. he sent me for mri head and entire spince since i have constant pain ranging from 3-20 in my lower back going down my leg with numbness in groin and upper thigh and now sharp shooting burning pain in groin. i say groin but its higher up than what i think of as "groin" its where the leg goes into the torso, not atually down to the groin. he ordered blood work. since i just read dr b's manual i read about the cd-57 i asked him to run it. it came back in the 40's. i say a rheumatologist and he doesnt want me on meds for ebv or yeast. all he offers is a little pain management. i will continue to see him until i can find someone who knows what chronic lyme is and how bad it is. sorry im rambling but the neuro part is bad. im now living outside phila pa. who is the best dr in the pa, nj, ny, md area to treat me. the family dr gave me a local drs namd. a dr b from colmar pa. as i was laying on my parents sofa with a pillow over my head from the light and sound sensitivity and feeling so sick my dad looked up this dr. my mother said they read that this dr must be paid $2000 up front and then you have to wait for over 5 hours to see him. now i dont know if this was a patient comment or what. i was not feeling well enough to listen and have not gotten the details. i just dont feel up to anything even as simple as turning my phone on. i need major help. years ago someone emailed me whose name was joe. he never tested positive for lyme as i have and had some weird symptoms. he saw a dr l i armonk ny. at the time he ordered a bunch of brain scans and had him on some of the meds i read from dr b's guide. i lost touch with him so i do not know how he was or how good dr l was. i looked up the email i had for him but it changed so i could never find anything out. i read on the medical link something about the bacterial load. i never heard of that test. can someone tell me what it is and how its done? is it worth it for chronic lyme or is the cd-57 enough and or better. i have tried the dr referral on this site but it wont work for me. i have written to the webmaster 2xs now. it just goes back to the login page. i have the email i got from them confirming my email and pin so thats not the problem. besides is the list of screened llmd or just drs that say they know lyme and treat it? i went thru that when i lived in st louis. im tired of going to the drs that say they know and only discover i know more than they do. please someone help me. sorry for the length. i have been searching for a dr now for a long time.
thanks
karen
Posted by katia (Member # 11269) on :
My heart goes out to you....like you I have suffered for many years. I was going to who I thought was the best Dr. She was in NYC, diagnosed me as cfs/fms. Almost 20 years ago I tested positive for Lyme and all she prescribed was 30 days of Doxy! I always have tested positive for LD since then, and no further antibio. treatment was given to me. Recently I went to my PCP and he ran the Western Blot, and was positive. I have many symptoms, loss of vision, chest pain, painful joints, etc. I'm not working due to all of my symptoms. At this site I found out about a llmd, he is supposed to be excellent, and one of the best. I haven't seen him yet, it's difficult to get an appt. I called about 1 mo. ago and got an appt. in May. He sees pts. from all over the world. You can private e-mail me if you want, then I can tell you what his name is. Many lymies know of him and feel that I've made a good choice.
Posted by rmruss (Member # 11409) on :
Hi,
Sorry to hear about the rough time that you are going through. As a long-time Lyme sufferer myself, your situation sounds all too familiar.
Have you considered going to a Lyme Support Group? I live in South Jersey, just outside of Philly, and we hold a meeting every month in the Burlington County Library in Cinnaminson (just off Route 130). These meetings are very informative and while there, you may be able to find out the name of a few LLMDs in our area. I highly recommend it.
I go to a LLMD in Central Jersey who is just FANTASTIC. She has helped me gain my life back. Hopefully, you will find someone who can do the same for you.
If you would like more information concerning the support group, send an e-mail to [email protected] .