posted
More important than location is finding an LLMD who will treat more aggressively. I have a difficult to treat case of chronic Lyme.
I live in MI but am looking outside of the state. I am assuming East Coast has the most knowledgeable docs. Have already been to Dr. C in MO. I have friends in Raleigh, N.C. if anyone good is located there.
Because of my situation with failed treatment (not aggressive enough) and my low income, I can't mess around anymore. I need a good LLMD who treats difficult cases. I will get the money but I have to hit the mark this time. Thanks for your help. ------------------------------------
I was bitten, had a bullseye rash but was not sick, so doc did not give me abx. Four years later, I got sick. I was misdiagnosed for another four years.
Was treated with oral abx for almost 2.5 years, then a break of 3 months and orals again for 8 months, IV Rocephin for 3 months (ended because it wasn't helping me and LLMD wouldn't let me go longer), then IV doxycycline for three months (JUST ended, because I broke out in hives and lost my insurance at the same time).
No one has ever prescribed more than one abx at a time. I have not tested positive but have positive specific bands. I have a CD57 of 20. Tests have been run for coinfections which have been negative but that doesn't mean I don't have any.
I saw a local LLMD for the first 3 months after diagnosis, then traveled to an LLMD in MO for the next two years. During that time, I went through a different oral abx each month because I was only supposed to stay on one longer if I felt it was helping me. At this rate, I took a new one each month until I finished the list. He said it was time for IV abx but he couldn't prescribe them unless I lived there.
So I went back to the local LLMD who had a heart attack and died the night before my appointment. I finally got in to see an LLMD 2.5 hours away, and he wanted me to try more oral abx first, so I did. None of them made a difference so he started me on IV Rocephin last November. I had 4 days where I actually felt better, then nothing after that.
After 3 months, he stopped it. He said he has been seeing me for one year and I because have not shown improvement he did not want to see me anymore. But then he said he would do one more thing, and that was to put me on IV doxy, which I was on for 3 months.
That ended two weeks ago. I started breaking out in a rash. (The same thing happened to me last summer. Any abx I took last summer made me break out, but when September rolled around, I could take them again. We never figured out why.) Just when I had to go off IV because of the rash, I found out that my insurance was ending 6/25.
I don't know exactly what he will do now, but he did tell me this was the last thing he would try. Also, I posted most of this story in a different section of Lymenet last March because I wanted to know about any good LLMDs who could help me. I heard from others who supported what I thought was true - that there are no LLMDs in Michigan who treat difficult cases.
My husband has been out of work for two years (but doing everything he can and making small amounts of money here and there) and we have two kids. I am on disability.
So, because of my situation with failed treatment (not aggressive enough) and my low income, I can't mess around anymore. I need a good LLMD who treats difficult cases. I will get the money to do this but I have to get the right doctor this time.
I thought I was doing this very thing three years ago when one of the main contributors recommended my 2nd LLMD by sending me a lymenet message string of people recommending him. He may be good for some, but I have to have someone who will treat me and not just use a one-fits-all treatment solution.
So please, a recommendation for someone outside of my state who can treat me? Thank you for your help.
Luce
Posts: 45 | From Grand Rapids, MI | Registered: Aug 2007
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Siciliano
Frequent Contributor (1K+ posts)
Member # 15920
posted
Hi, Luce, you have really been through so much!! You are such a strong person! I will be happy to work with you until we find the right Dr. for you!!
We are here for you anytime you need help and support.
-------------------- I'm sorry but I am no longer accepting any private messages due to my own battle with lyme. Posts: 3897 | From New Hampshire | Registered: Jun 2008
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