I have been in treatment for a 3 months now after having lyme and co's for 2 years. my llmd has a blanket regimen of doxy flagy which he promised me will work for all infections.
im doing everything correct as far as diet and supplements, but zero progress.
he also won't test for bart(says its not common) and i suspect i may have it with major neuro/cns issues. since starting treatment ive reacted w/ major physical pain, maybe its just the meds.
i am thinking of switching to a doc in D.C. because hes only a few hrs from me. i have invested so much with my current llmd but he is unwaivering on treatment options and distant, but has helped others i know successfully w/ lyme.
should i wait a few months to see if I see respond to oral abx treatment? Would i be jumping the gun by switching to the D.C. doc? Does anyone know anything about Dr. J in D.C.?
its a tough call for me because id hate to drag my wife and kids through this and i know this new doc is going to be extremely expensive and like a lot on here, we are not financially prepared for iv drugs. but i need to get better for my family.
thanks so much for any input
Posted by Lymetoo (Member # 743) on :
Message sent
If all you've been given is doxy and flagyl, then I can see why you are not making progress. Have you been checked for all coinfections? Nearly every Lyme patient has them.
-- Moving this to Medical Questions for more help.
Posted by Lymetoo (Member # 743) on :
up for help
Posted by manybites (Member # 33750) on :
I doubt you have just lyme .It is always parasites and coinfected as bartonella and mostly babesia too are present with lyme.
You should add herbs as well to make progress.
I just hope that you change that doctor and see if the other doctor can treat you for parasites and other coinfections as well.
I would not rely in test .You can have bartonella and have babesia and test negative.
Also you need to test for FRY BUG that is spread a lot lately and make people fatigue , RA gives them muscle pain like fibromyliangia etc.YOu need to do a FRY test.
If this is present than you need to be in diferent combo.
Posted by poppy (Member # 5355) on :
There are other choices for a new doc than the one you mentioned. Check with support groups in your area.
Three months is not long considering that you have had it quite a while. But I don't think a doc that will only use those two drugs is going to work out if you have bart or babs also.
Posted by nonna05 (Member # 33557) on :
What do you take for fry bug????
Exaustion/weak flattened..
been on treatment for month's ,,some other improvements ,but can not do any day to day stuff..
Getting to shower has been put off//so getting out of house would be like moving a freight train with no engine
What do I ask doc to do to test ?/any lab???
[ 02-10-2012, 10:57 AM: Message edited by: nonna05 ]
Posted by tickbitt (Member # 33753) on :
If you had just lyme doxy + flagyl should have you feeling better. Maybe not 100%, but better.
Failure to progress could easily be from other infections; bart and babesia are common co-infections. I have all three:(
Pull up Burrascano's guide and read through the symptom list for co-infections.
And, like you're thinking, get a new LLMD. S/he may be 'lyme literate', but isn't very literate about co-infections.
Posted by TF (Member # 14183) on :
Doxy and flagyl works for lyme, but it doesn't do anything for the coinfections. Babesiosis and bartonella are so common that every person in Maryland that I have ever met with lyme has both of them.
Burrascano says that if you have had lyme for at least a year, you definitely have coinfections also. No exceptions.
You need treatment for the coinfections. I agree you need to change doctors. I have a lot of info on Dr. J. in D.C. and I will be glad to send it to you--patient reports, etc. You may not realize some of his unique, extraordinary charges if you are put on IV.
I can give you names of other lyme docs that won't charge the horrendous fees he charges for those on IV.
So, don't think he is the only excellent lyme doc in D.C.
Write to me privately to learn more.
Read and STUDY the Burrascano Guidelines to convince yourself that the treatment you are on will NOT treat the coinfections. The Guidelines are here:
It took me 1 year of switching up my meds to finally make any progress. I know it's hard to have that kind of patience. My llmd is willing to try any meds or combo I ask for, no matter that my tests for co's were negative.
My 1st round of Flagyl I couldn't tolerate well at all. had nerve pains in my hands and was afraid to push it.
However, my 2nd round I tolerate it much better. If your pain is a huge issue, I'd say switch to something else, since it's been 3 months. If you are herxing too hard, try another route.
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