is it important to go to an llmd or can a local doctor treat?
Posted by TF (Member # 14183) on :
Doctors who do not specialize in lyme disease have been miseducated by the IDSA (Infectious Diseases Society of America) to believe that:
1. lyme is RARE (meaning VERY rare, so they will say you don't have it), and
2. lyme is easily treated with 2 weeks to 28 days max of doxycycline.
So, this is what you can expect if you try going to a doctor who does not specialize in lyme disease.
We all started out trying infectious disease specialists or our pcps. It doesn't work. But, give it a try if you want to experience it for yourself.
My pcp sent me to a neurologist. He treated me like a mental case and did not believe my positive lyme test (from LabCorp and it said "positive.") He would not treat me.
I also tried an infectious disease specialist. She came into the room YELLING at me for how I answered her questionnaire listing all of my many, many symptoms.
She yelled, "This is ridiculous! Nobody could have this many symptoms!" (And this is with my positive lyme test.) She then sent me for another blood test for lyme.
So, non-lyme specialists will basically try to undiagnosed you with lyme disease.
Why not call the lyme support groups in your area (see Support Groups on left side of page) and see if they know anyone locally who can help you.
Also, read and study and learn more. Once you realize that lyme is an extremely complex disease that is difficult to cure, you will begin to understand why it is best to get to a doctor who specializes in this disease--meaning that his/her practice is exclusively treating lyme disease or primarily treating it.
It is best to find a doctor who has cured at least one person from lyme disease. It is better if you know 3 people the doctor has cured. That tells you that the doc knows enough to cure people.
If you don't do this, you can go to a doctor for years taking his treatment and never get well. This is the typical experience for a lyme patient.
You see, many doctors treat lyme disease but only a very few know enough to cure a person of it. Your job is to find one of those few doctors.
Lyme support groups will help you in your search and people here on LymeNet will also help.
A Boston TV station did a show on the lyme disease controversy a few years ago. Here is the Boston Chronicle video on YouTube:
I suggest you watch this video a few times. It explains the lyme disease controversy and the role the IDSA plays in making it difficult for a person to get good lyme treatment.
Posted by hopingandpraying (Member # 9256) on :
It is very important to be treated by a LLMD. Non LLMDs have no clue about this horrible disease or its complex treatment!
Here is an important link for you to read about "Why you need a LLMD":
The top LLMD, Dr. H, has written a new book entitled, "Why Can't I Get Better?". It is an excellent source of information.
Also read "Cure Unknown" by Pamela Weintraub. Check your local library or buy it used on Amazon.
View "Under Our Skin" for free on www.hulu.com Posted by ohdeer (Member # 45406) on :
TF: thank you for the info. I have been and am still reading everything those on this site have recommended. It has been very helpful on explaining some of the controversies. I am even hesitant to tell anyone that I tested positive for lyme due to this. If I were feeling very ill, I might feel differently. I will checkout recommendations for llmd. Thank you again.
Posted by Robin123 (Member # 9197) on :
You can ask here for an LLMD is Kansas or wherever you're willing and able to go. Put desired location in the heading.
Um, you don't want to get to the point where you are feeling very ill - best to treat before it takes you down, if you have it.
You can discuss further in General Support or Medical Questions and people can respond there.