My son has a ton of autoimmune stuff going on and we are trying to determine if it is really autoimmune, lyme induced autoimmunity or pandas.
He has a positive strep titre and Igenex positive lyme test. We are thinking of dropping $600 on the culture test - any thoughts on that ?
Posted by faithful777 (Member # 22872) on :
I would just go to a LLMD. You already have a positive Igenex which most of don't even get when we are positive.
Post in seeking to find an ILADS LLMD in your state.
Posted by Keebler (Member # 12673) on :
- Another lyme test is not necessary. As stated, you already have a positive test. No more testing required as long as symptoms remain. It can take months and years to achieve remission.
A positive strep test is also key.
These "stealth" infections must be fully addressed, in all their forms, stages, cycles, etc. for as long as necesary - with support measures, of course. But support cannot be alone.
A good ILADS educated LLMD is your best guide for treatment to fully address all stages and aspects of infections with immune support along the way.
Whatever immune support is considered must be guided by a LLMD or LL ND because lyme sort of "flips" certain functions of the immune system. This cannot be treated by just any doctor who is not aware of lyme. Lyme changes so much. Specific measures matter.
Just thinking this is an immune problem, though, can be a disasterious mistake.
Regarding PANDAS and strep, the LLMD should be able to guide there, too, but it seems you have trouble finding a LL doctor (?) so, perhaps if you contacted the PANDAS parent support groups they could lead you to a good doctor who would also be LL (but check) and who can address the cause: infection.
The Lyme-Induced Autism Foundation would also be a good place to find LLMDs for children who may also have PANDAS. -
[ 06-29-2013, 06:26 PM: Message edited by: Keebler ]
Posted by Keebler (Member # 12673) on :
Low Dose Naltrexone - support for immune system that seems to help about half of those with lyme (who try it)
In the presence of infection, though, this is PART of the protocol. Infection(s) MUST also still be addressed directly. -
Posted by Lymetoo (Member # 743) on :