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Best/most Lyme literate major medical center

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Posted 1/6/2009 2:31 PM (GMT -8)
Hi all, my family is insisting that I be seen at a major medical center like the Cleveland Clinic and I have an appt there for 2/10 - I have family in the area that I can stay with and the CC is top rated in endo and GI which are two of my major areas of difficulty.  My LLMD and my sister, Northlover, are concerned that I am likely to leave there without a DX other than anxiety/depression or the like and an RX for AD meds.  My LLMD suggested that I check on the forums for opinions about which of the centers like CC are most likely to be Lyme literate or friendly.

Thanks,

jasrich

Posted 1/6/2009 3:03 PM (GMT -8)
Knowing what I know now, I would say : Save your money. You said you had a llmd. You haven't been on abx long enough to see how much better your symptoms will get. I would tell you to at least give it 6 months before you try to go to some hospital. You may be surprised at your progress with just your llmd and abx.

You learn patience with the illness.
Posted 1/6/2009 3:22 PM (GMT -8)
Don't want to discourage you, the CC is very good at most things. Heart, Breast Cancer and several other areas. I don't believe Lyme is one of them. We live in Cleveland and I was treated there six years ago for breast cancer and I am still here today because of them. I had a stage 3 cancer and am cancer free to this day. My husband was however there to get answers for Lyme disease and was told it was ALS. We had to go elsewhere to get treated for Lyme. He is making a slow recovery but is recovering. It is not ALS as they said. I wish you the best but suggest you stick with an LLMD. Bev
Posted 1/6/2009 4:44 PM (GMT -8)
And I have Dr. J down here in SC (formerly of NC) only 80 miles away. I spoke to people in his office today to find out if Dr. J will give 2nd opinions or do records reviews and he won't - if you want to see him you have pay the full freight. Northlover and I are inclined for me to see him, but my wife and the rest of my family and hers wants me at CC. They question my judgment after a year of trying to get well by treating my thyroid and adrenals, with hydrocortisone, and getting worse, and they put more faith in a major medical center than they do any doc that I find on my own.  I know that I need to be my own best advocate but I would prefer not to go this alone.  Dunno.

Posted 1/7/2009 8:33 AM (GMT -8)

jasrich,

I would recommend Dr. J in a heartbeat. I live in Raleigh, and I've been seeing him for almost 2 years now. Once you get started with him, he is not expensive at all (in relative terms, of course). I see him 2 times per year, at $240 each visit. The initial 2 visits are more expensive because he spends a good deal of time with you.

Trust me, he is worth the expense. I have improved tremendously...and I don't take antibiotics every day. He usually puts his patients on a pulsed dosing schedule. Right now I take antibiotics for only 3 days a month, and I feel great! When I started with him, I took antibiotics for 3 days a week for 3 weeks every month (with one week off every month). He follows your progression and begins to slowly decrease the frequency of antibiotics. If you need additional info, feel free to shoot me an email.

-Lance

Posted 1/10/2009 1:54 PM (GMT -8)
Lance, I remember you when I first joined this forum. I don't come here often, but I remember you were about 90% or more and were using Cumanda and other Nutramedix products with abx.

I've tried Nutramedix and the Cowden protocol with very limited success. IMO, the best product they have is Burbur.

Anyway, have you relapsed or just didn't get any better? I wonder why you are still on abx? I would think long term abx would work.

I've been treated for over a year with a LLMD in MO. I was able to return to work since August, but just relapsed after the holidays from a virus. I'm very discouraged at this point.

Just wondering what you attribute any successes to.

Thanks,

CherylSue
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