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Posted 4/10/2017 4:23 PM (GMT -5)
I was diagnosed with Long term, chronic Lyme back in September. I did not have positive blood tests but, due to symptoms, my doctor diagnosed me and did a month of Doxy. After the month was up, she said she would rather I find a specialist as she wasn't really well informed enough to figure out a long term protocol. Since I live in a very rural area, we have VERY few options so, it wasn't until this past week that I was able to find someone who would see me (and take my insurance)

Since then, my symptoms have gotten SO much worse. I have pains and problems I didn't have before. I have been trying to self treat with everything I could find but, to no avail.

My specialist is now telling me I don't have lyme, used air quotes when mentioning Lyme Literate Doctors and said that there is no such thing as chronic lyme or a negative lyme test. I have been waiting MONTHS to get in to see this lady. Needless to say, I'm frustrated..... We don't ahve options here and I just want someone who will help me cure this thing....
Posted 4/10/2017 4:29 PM (GMT -5)
LymeTrez - the 'specialist' - where did you get her name from? Did you think she was a LLMD?

Sorry you had to listen to that bull.


What kind of specialist was she?

Did you try to get recommendations from members on this forum? Or ask one of the Mods to check our lists of LLMD's near you?
If that is where you got the name, please email me so I can remove her from our LLMD list.


You should try and find a LLMD ....or you can do an herbal protocol if that interests you.

We can help you find a LLMD...
Posted 4/10/2017 4:35 PM (GMT -5)
I did not. I don't believe anyone ever answered my thread about that. I am in the Bangor Maine area. I also need to make sure it is someone who can take my insurance as I don't have the $$ to do it otherwise. This was someone that was recommended to me, locally. She is an infectious diseases doc.

She is running a TON of new tests to rule out other things (Lupus/Psoriatic arthritis .... etc) I'm hoping they all come back negative so I can at least throw it in her face. She made me cry. In fact, she was out in the hallway LAUGHING about my previous diagnosis with a colleague.

I am just desperate for answers and some kind of relief....
Posted 4/10/2017 5:10 PM (GMT 0)
Well, that's not surprising at all. "You don't have lyme" - I've heard that many times. They send me now to hospital to make more tests because it's not lyme, it must be something else smile
That's because most doctors just follow the procedures, if you have negative western blott the procedure says you don't have lyme smile Positive results from other tests? Meh, it doesn't matter - they will say other tests are not researched enough plus it's not in the procedure smile That's how it works in Europe, I guess it's the same as in US.
Good thing is you can always start using some herbal protocol (like Buhner) without help of any doc.
Posted 4/10/2017 5:25 PM (GMT -5)

LymeTrez said...
I did not. I don't believe anyone ever answered my thread about that. I am in the Bangor Maine area. I also need to make sure it is someone who can take my insurance as I don't have the $$ to do it otherwise. This was someone that was recommended to me, locally. She is an infectious diseases doc.

She is running a TON of new tests to rule out other things (Lupus/Psoriatic arthritis .... etc) I'm hoping they all come back negative so I can at least throw it in her face. She made me cry. In fact, she was out in the hallway LAUGHING about my previous diagnosis with a colleague.

I am just desperate for answers and some kind of relief....

Really - we didn't answer your thread looking for LLMD's?...sorry if that happened. But we usually will tell you that you can email us (Mods) and we can check our lists of LLMD's .

I don't know about insurance...many do not take it.

An Infectious disease dr isn't a good choice unless they are lyme literate like Dr. Jemsek is.

You can email me and I will check for you for LLMD's ..
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