posted
My LLMD wants me to start an IV treatment with rocephin but my kaiser docs don't even believe that I have lyme. What am I supposed to do? I can get the rocephine through my primary care doc bc she believes that the treatment my LLMD is helping me but she can only do so much because she doesn't know enough about the drugs to help me beyond that.
What steps can I take to find a kaiser doctor that will agree to help me!
-Lindsay
Posts: 484 | From Burlingame, Ca | Registered: Sep 2005
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posted
If you can figure out how to get Kaiser to pay for anything Lyme related I'd like to know. If I even said Lyme in a Kaiser doctor's presence they started doling out antidepressents faster than you can say Lyme.
They don't believe in Igenex's testing so my mom did the Kaiser Lyme test since she had the most positive bands of the 4 of us. They sent the test to Steere's lab. When they claimed it came back negative she went to records and asked for a copy of it. They have no copy that she tested negative, they won't let her see an ID doctor, but they are sure my whole family is psychotic and doesn't have Lyme. I don't know how anyone could get them to pay for anything Lyme related.
Posts: 50 | From San Diego, CA, USA | Registered: Nov 2004
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pmerv
Frequent Contributor (1K+ posts)
Member # 1504
posted
you are entitled by law to copies of your medical records. You should have a written request on file for them to forward a copy of your test results to you.
-------------------- Phyllis Mervine LymeDisease.org Posts: 1808 | From Ukiah, California, USA | Registered: Aug 2001
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posted
you have to threaten to take them to court. you have to take them to court.
at some point they will back down...especially with positive serology.
even without positive serology, however, it is possible to have severe borreliosis. this is well documented and even the CDC admits this.
Posts: 523 | From Stillwater,OK,USA | Registered: Sep 2004
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trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
I am so sorry you are getting this run around.
Seems like the LEAST these docs could do was be up front and honest and say---you are screwed.
Instead they are playing head games with you.
Your primary doc does NOT need to know much about the rocephin if your LLMD will be overseeing your care, even from afar. The Primary Care doc also does not insert the picc line. A nurse would do this at a hospital or similar facility.
I do not think your primary care doctor is being sincere or fair with you and I am sorry that you are caught in the middle of this.
Is there any chance an open enrollment is coming up so you can switch providers?
It may be time to begin to discuss with your LLMD the alternatives to IV treatment. There are many and a lot of LLMDs are choosing long term orals OVER IV because of the legal issues, insurance battles and health risks.
There are options for neuro lyme besides IV.
Again I feel for you right now and am so angry at the system! Trails
Posts: 1950 | From New Mexico | Registered: Sep 2001
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Worthless tests & labs, a dangerous vaccine, insurance companies refuse to pay, undertreatment the norm, all about money. MO. Posts: 281 | From CT | Registered: Oct 2005
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