I've been having neurological symptoms for 8 years, and I finally saw an LLMD a few weeks ago and he wants to treat me for lyme and various co-infections. Very excited about finding an answer to this mystery illness, but from reading up on lyme treatments, I'm a little concerned about the treatment plan he has proposed. I'm going back in a week to hear the results of my blood test and to start treatment. He has proposed long term oral antibiotics, so are oral abx effective for someone with late stage symptoms? I read in Dr. B's guidelines that oral abx is sometimes first used with early disseminated, but I am WAY past early, so I was just wondering if anyone had an opinion on this, I would like to hear it.
Posts: 21 | From Richmond, VA | Registered: Jun 2010
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canefan17
Frequent Contributor (5K+ posts)
Member # 22149
posted
Listen to your LLMD.
90% of patients who go to an LLMD (no matter what stage they are in) start on antibiotics.
What's the abx protocol? Which ones you taking?
Posts: 5394 | From Houston, Tx | Registered: Aug 2009
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Good for you for getting yourself a lyme doctor!
I had undiagnosed lyme disease for 10 years before finding a doctor who figured out what it was.
Still, my lyme doc put me on oral medications only, and I got rid of my diseases. I had lyme, babesiosis, and bartonella.
My doc followed the Burrascano guidelines. Not many people need to be put on IV for lyme disease. Most people can get well with orals only.
Rather than woodenly reading the Guidelines as saying that if you are sick longer than a year, you need IV treatment, I believe they should be read to say that "more severely ill patients, and those with prior significant steroid therapy or any other cause of impaired immunity" (p.20) will likely need IV therapy. This will often include people who have been sick over 1 year, which is when the immune system becomes significantly compromised. (p. 3: "Illness present for at least one year (this is approximately when immune breakdown attains clinically significant levels)."
I was sick for 10 years, but I would not be classified as more severely ill (meaning wheelchair bound or often bed bound, totally unable to function, having seizures, etc.). And, I had not taken steroids.
The Burrascano type docs I sent all my friends to also took this interpretation and treated all my friends with just orals. That includes 2 people with a fibromyalgia misdiagnosis for 15 to 20 years.
So, don't think it is cut and dried like, if sick over 1 year you need IV. It is really based on HOW sick you are. Only the sickest need IV to get well.
I and ALL my friends got rid of this disease on oral medications only. So, I think you are in good hands. Just be sure the dosages given to you are the bactericidal dosages Burrascano recommends. For example, I took 1,500 mg of amoxicillin 3 times per day (plus probenicid) for a total of 4.5 grams of amoxi per day. That is a bactericidal (killing) dose.
That is what Burrascano says works. It worked for me and my friends.
It has now been over 5 years since I completed my lyme treatment and I am still symptom free, enjoying my life.
Good for you for becoming familiar with Burrascano's Guidelines. That is how you get your education on lyme disease.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
Thanks guys! I'm going back to the LLMD on the 29th to go over the test results and hear his treatment plan for me, I will keep you all updated, as I'm sure I will have more questions after I begin treatment!
Posts: 21 | From Richmond, VA | Registered: Jun 2010
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