I was recently diagnosed with Lyme, after 8 years of no diagnosis other than Fibromyalgia. For some reason, the test finally came up positive. I went to a Infectious disease Doc here in the suburbs of Atlanta and she seemed great. Until~ I called to ask her to please extend therapy of the IV Rocephin or to follow up with oral abx. She said, 'NO! I will NOT treat any longer than four weeks!" I was shocked. For having lyme for almost 8 years, it would seem necessary to continue treatment. I am panicking and frantically looking for a LLMD COVERED by BC/BS HMO **** I will be out of Rocephin next saturday, and I am looking now, hoping to find someone who will continue therapy for me. I do have an appointment with a Dr. B in Roswell, who takes NO insurance, but is LLMD, but I can't afford alot of treatment not covered by insurance. I called Emory and got a referral to a Doctor who treats Lyme there, but who knows if he will continue trmnt or not. I could always go -without a referral- to a dermatologist and get a RX for acne for a year ~ but not for Lyme, huh? What do I do? I want to get better and have seen very little improvement so far, but enough to keep me hopeful. PLEASE tell me if you know a good Doc in Atlanta who takes insurance. Or any advice. You can email off list, too.
Is your appointment with Dr. B. actually Dr. B. at the FFC?
She is the one who had me tested for Lyme through Igenex and now has me on long term ABx's plus a lot of other supplements.
I really like her. The whole office treats us like humans, seems really concerned about how we are doing and have a real good protocol for those suffering with viruses and LD.
Just wondering ~~~ Sandy
Posted by Gabriella7 (Member # 7862) on :
Hi Paula, I emailed you at your yahoo address. Let me know if you got it. Did you recommend Dr. B in Roswell to me? I have an appointment on the 26th but it will all be out of pocket and I pay for 3 insurances!
The government watch dogs will pull the licenses of doctors who prescribe longer than the usual time limit on antiobiotics. I checked on Dr. B who is now in Roswell in the AMA book and he was listed in Hampton, Ga. at the time of the printing.
Some of the best docs have lost their licenses treating lyme patients.
Sandy, Where is the doctor at the FFC (what does that stand for)? You can email me here if you want. Gabriella
Posted by PaulainGeorgia (Member # 7917) on :
yep, I am the one who gave you the name of Dr. B in roswell. He has a Lyme site that you should check out. off list. anyway, I DO have an appointment with him next tuesday. I'll let ya know how it goes. I hope he will take this seriously. He came highly recommended from others on a yahoo support group and by another MD who used him to treat his girlfriend. He did warn it would be costly. We'll see. I have an infra red sauna, so I can do that at home. I am interested in trying some of these alternative therapies as rocephin has done little for me but make me sleepy and weepy and achy..... must be working, though.
email me if anyone knows a LLMD in Atlanta who will treat with antibiotics longer than 28 days.
Paula
Posted by lou (Member # 81) on :
What you are up against is the IDSA guidelines being used by ins cos and state medical boards to enforce a certain kind of treatment (frequently inadequate, especially for late stage cases). They are the worst kind of cookbook medicine. Are based on wrong info. and establish a fraudulent standard of care, such as the one that was applied to you.
Any doctor who deviates from the standard, and bases treatment on response or any other criteria will sooner or later get in trouble. So even a doc who knows he/she is prescribing inadequate treatment will still do it out of fear of the consequences to him or her. But this may have adverse consequences to the patient, which no one seems willing to do anything about.
IDSA = Infectious Diseases Society of America. One of the guideline authors works for the fed govt, so now you know what you are up against!
Posted by lightfoot (Member # 2536) on :
Hi PaulainGeorgia!
Sorry to hear that you've got to deal with securing treatment again while in the midst of being so darn sick.
Twenty eight days of Rocephin is not enough to tell anything.......it can take several months to see results.....just like any other antibiotic (ABX).
You can apply to Roche for free Rocephin..they are very generous. The link below is very complete for other medications (ABX) also.
IV Rocephin antibiotic for Lyme and co-infections: If you are on Rocephin, Roche Pharmaceuticals manufacturers it, and their phone number is (973) 235-5000.
Call and ask about their patient assistance program. Tell them how serious your situation is and ask if the forms can be processed ASAP.
Rocephin is prohibitively expensive, sometimes up to $200 a day. If you cannot afford this but you need Rocephin, the generosity of Roche Pharmaceuticals has made FREE Rocephin not only possible, but very simple.
1. Call Roche Pharamceuticals in Nutley, New Jersey. Ask for a "Needy Meds Application" to be sent to you. 2. Upon receipt, fill out the form with your doctor. The form consists of only a few lines and should take no longer than 5 minutes tops. No files or papers must be sent- ONLY this simple form. Your doctor should send it off.
3. Usually, from the time the form is sent to arrival of the drug at your Doctors office will take 3 weeks. The usual shipment is of 3 months of Rocephin. You may refill at will with the same simple form.
IV supplies can be gotten cheaply if you comparison shop.
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Good luck and keep us posted, okey dokey??
Healing smiles....lightfoot..... Posted by Mathias (Member # 5298) on :
Rocephin (ceftriaxone) is available as a generic.
Roche however is excellent at providing free medications for people in need.
Posted by Aligondo Bruce (Member # 6219) on :
you might want to consider a D.O....in some states, osteopaths have their own medical boards, and are usually willing to consider alternative therapies...they don't have to worry about hitlerism coming from IDSA or allopathic medical boards, and typically they are aware of the corruption present in allopathic medicine.
Posted by lou (Member # 81) on :
DO's have their own medical boards? I never heard this before. Are you sure?
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