I researched and went to the LLMD today. I needed to get answers for my own sanity.
I'm on day 27 of the 28-day doxycycline treatment (100mg, 2X per day) that an infectious disease doc put me on for a bulls-eye rash.
On the plus side, my LLMD did not believe I have chronic lyme and believes my case is pretty clear cut. My doc believes that this is a new infection, BUT from my compromised immune system from my other health problems, the dosage of antibiotics I'm on is too low and WILL RESULT in chronic lyme without modifications. The LLMD is an expert with some of my other health problems too and I think that made a big difference with treatment.
My doc added minocycline and is treating for biofilms. My doc is testing for blood clots along with a bunch of other tests. My doc did not recommend treatment for cysts at this point but is doing some blood work that may help surmise if there are cysts.
The LLMD thought it was pointless to test for Lyme because it's obvious that I have borrelia and the tests are unreliable anyway.
The LLMD said that I will have the herx about every 4 weeks, but will eventually start having some good days and that made me hopeful.
The price was steep to go to the LLMD, but I had to weigh that with my sanity and my lack of confidence in the infectious disease doc (I knew more about my co-illnesses than he did and my intuition told me that could be an issue with treatment).
It was a lot to take in. I'm still making sense out of all of it.
Posted by surprise (Member # 34987) on :
Good for you! Brilliant.
Posted by dal123 (Member # 6313) on :
PRAISE GOD!!!!!
Posted by Libra72 (Member # 38453) on :
So glad your on the right track to getting and feeling better
Posted by Lymetoo (Member # 743) on :
Good job!!
Everyone in treatment will end up with the cyst form as well. The spirochetes do that to "hide" from the antibiotics.
Posted by debilyn (Member # 35753) on :
You did the right thing. Now you're on the road to being yourself again.
Posted by Keebler (Member # 12673) on :
- Doxycyline (or many other antibiotics) can cause lyme to go into the "cyst" form within 20 minutes of taking the first dose.
Antibiotics are not effective against this form of lyme and it can go into "hiding" and come back later as chronic lyme, harder to treat.
For that reason, many LLMDs also use what is called a "cyst-buster" Rx such as Flagyl:
Infect Drug Resist. 2011;4:97-113. Epub 2011 May 3.
Evaluation of in-vitro antibiotic susceptibility of different morphological forms of Borrelia burgdorferi.
Excerpt:
. . . Conclusion
Antibiotics have varying effects on the different morphological forms of B. burgdorferi.
Persistence of viable organisms in round body forms and biofilm-like colonies may explain treatment failure and persistent symptoms following antibiotic therapy of Lyme disease.
=========================
Liver support & Adrenal support is also very important before and all during treatment. Most LLMDs are well aware of those methods. -
Posted by Keebler (Member # 12673) on :
- I'm glad you have seen a doctor who knows more about lyme than your previous doctors. Be sure - absolutely sure that this doctor is ILADS "educated" and is really lyme literate.
Are you being assessed for other tick-borne infections, too?
EVERYONE has to address the cyst form. It just sounds odd that he says he may do a test later for that. Does not compute. I don't even know what test that would be.
Besides, a test is not required to know that the cyst form just happens with the spirochetes get irritated by just about anything. It's just the science of lyme.
Please be certain that the cyst form will be addressed sooner rather than too late.
Diagnosing Lyme Disease (&/or whatever else is going on)
Other tick-borne infections and other chronic stealth infections - as well as certain conditions - that can hold us back are discussed here. -
Posted by Keebler (Member # 12673) on :
- While each LLMD has their own approach for each individual person (since each case is unique), still, there should be knowledge of this protocol and some sense of continuity along these the lines of Burrascano's work, first link below.
Even if not an ILADS member, it's vital that they are current with ILADS presentations and the like. You want them to know as much about the science of tick-borne infections as is currently known.
You also hope they are thinking ahead, too, since there is so much to still be discovered.
I also hope you have been give Liver support and Herxheimer support instructions. That's really important with minocycline.
Ginger capsules may help counteract vertigo & tinnitus that may accompany minocycline.
�� Nutritional Supplements in Disseminated Lyme Disease ��
J.J. Burrascano, Jr., MD (2008) - Four pages
==============================
It's very important to have this book as a reference tool for self-care and support measures. It answers so many questions in detail that is impossible here on the forum.
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