Most recently, I was given a medical opinion from an infectious disease doctor regarding my Lyme condition. Her reponse was that after the intial onset of Lyme (4-8 weeks), there is very little, if anything, that can be done about the condition. She stated that there was no substantial medical data that supported long term antibiotic treatment. WHY DO SOME MD'S TAKE THIS MEDICAL POSITION? I'm looking for reassurance that my long term antibiotic treatment will prove beneficial. Thanks for any input that can be provided. MATT Posted by Keebler (Member # 12673) on :
-
Matt,
so that more can read and reply, I'm breaking up the text in your post. Many here have trouble reading solid blocks of type.
----------- original post:
Most recently, I was given a medical opinion from an infectious disease doctor regarding my Lyme condition.
Her reponse was that after the intial onset of Lyme (4-8 weeks), there is very little, if anything, that can be done about the condition. She stated that there was no substantial medical data that supported long term antibiotic treatment.
WHY DO SOME MD'S TAKE THIS MEDICAL POSITION? I'm looking for reassurance that my long term antibiotic treatment will prove beneficial.
Thanks for any input that can be provided.
MATT -
[ 06-15-2009, 06:14 PM: Message edited by: Keebler ]
Posted by Keebler (Member # 12673) on :
-
The ID doctors who are stuck in the IDSA approach are not educated enough. That doctor was wrong in what she told you. It is not an easy path and there are no guarantees but, yes, longer treatment has worked for many patients.
The thing is that since each person is a bit different and the treatment is so complex most ID doctors just can't comprehend it. They are used to one pill treating one disease that causes the same symptoms for everyone. That cannot work with tick-borne disease.
In addition, a complex system of nutritional care is required for most lyme/TBD patients and that also is difficult for most ID doctors.
It is a tape of a great show on lyme disease done by a Boston TV station a few months ago.
When you get to the site, select the link to view the show. The show was taped by a girl on LymeNet and she put it on-line for all of us to be able to view it.
You will learn a lot about the medical controversy surrounding lyme disease and why it is so hard to find a doctor who knows how to cure a person of lyme disease.
-
Posted by matthew (Member # 16072) on :
Thanks for breaking up my text so that all may read and share. I'm sorry, I should have done so to begin with. I guess the Lyme is impacting my mind as well. Matt
Posted by Leelee (Member # 19112) on :
Hi matthew,
Please do not be discouraged by your doctor. An LLMD is the best person to treat Lyme and co-infections.
If you have a chance, you may want to see the documentary "Under Our Skin". It will answer a lot of your questions about why doctors shrug their shoulders and dismiss Lyme patients.
The book "Cure Unknown" by Pamela Weintraub will also give you lots of information on the subject.
Posted by matthew (Member # 16072) on :
Thanks, I currently am seeing a LLMD here....have been for about a year... I appreciate the feedback.
Posted by TF (Member # 14183) on :
Matthew, your experience is common.
I had undiagnosed lyme disease for at least 10 years. I finally found a lyme doctor who follows the Dr. Burrascano lyme treatment guidelines, and I got rid of my lyme disease.
I have referred many friends and acquaintances to Burrascano type docs and they also have gotten well.
Dr. Burrascano is the world guru on lyme disease. His Guidelines are found here:
I suggest you read and study them. Then, your job is to find a lyme specialist who follows Burrascano.
Ask if the doc follows Burrascano when you call to make an appointment. If he doesn't, I would look for another doc.
By studying these Guidelines, you will find out how complex lyme disease is. And what good lyme treatment looks like. Here are some points from the Guidelines:
You must attack both the regular and cyst form of lyme simultaneously--requires 2 different antibiotics to do so.
You must test the patient for all co-infections and other physical ailments (thyroid, etc.) and treat everything the person has.
You must treat all co-infections (including mycoplasma, etc.) or the patient will not get well.
You must use Igenex for most of these tests--they are a tick-borne disease speciality lab in Calif.
You must use very high doses of antibiotics to kill the diseases (batericidal doses).
You must give the patient supplements, probiotics, herbs such as artimesinin if babs is suspected, and require adherence to rules such as low carb diet, no alcohol, rest, and exercise as the patient is able to do it.
You must treat at least 2 months after all symptoms have disappeared (if sick at least 1 year).
These are just a few of the important points you will see in the guidelines. You want a doc who does EVERYTHING Burrascano says to do. He treated lyme for over 25 years, and compiled what he learned so that other docs could benefit from it. Read it in his Guidelines.
I had lyme disease, babesiosis, and bartonella. (Two common lyme co-infections.) Most of my friends had the same.
Don't be discouraged. But, it can take some work to find a good doc. And, a good doc won't be cheap. Be willing to travel.
Contact local lyme support groups (see "Support Groups" on the left side of this page) to find a good lyme doc near you. You may have to go out of state for the expertise.
The doc is the key to getting rid of this disease. You want someone with years of experience treating lyme patients.
Forget anything an ID doc says. They are the specialty that is SUPPOSED to treat lyme disease and they act like they know all about it, but the truth is that they know virtually NOTHING about lyme disease.
We have all had bad experiences with ID docs.
Most lyme docs had lyme themselves or someone in their family had it. That's how they figured out that what the medical profession says about lyme isn't true and figured out what it took to really get someone well.
You have to find a lyme doc through lyme support groups or other lyme patients. Lyme is not an official medical specialty. You can also post in "Seeking a Doctor" forum for names.
We don't post our doctors' names publicly since the way they treat lyme disease (high-dose, combination, long-term antibiotic therapy) is considered incorrect/unnecessary by the medical profession as a whole at this time.
Watch the Boston TV station lyme program (link to video Keebler gave you), and this will all begin to make sense to you.
Posted by j_liz (Member # 20496) on :
I found this clip very encouraging. It's a CNN news clip that includes Mandy Hughes of Under Our Skin. Look at the improvement.
![[confused]](graemlins/confused.gif)