non-llmd docs who believe in lyme?

sojourner,

that was agreat lette, i had to reas it in parts as i was going crosseyed..lol but i think i got a lot out of it. i hope i retane itsomething you said stuck in my mind tho. anout epc areas, what about Drs in in the south where lyme is seldum hear of? i think they need to be aware of lyme and how to dx it and treat it.

as i have found in my rescher, i lived in many places that lyme was previlent, but i found my roots to be planted in Tx. unfortinatly for me. i have run into the brick walls by Drs and have found there is only a few cases of lyme here in people.(6) so far. as of yet i have been able to find out who they go to for treatment. the only one i do know personaly is under the care of a DR in boston.

i pray along with everyone here that the 30th will be our day of resalosion to a disease that takes so much out of us, and in some cases our lives.

and as you have said to do no harm has fallen by the waysiad in so many Drs to date. it needs to be brought back to the forefornt as it was disined to be.

sorry if this is hard to read for the misspelled words. my thumb is twitching and my mind is fussy right now.

Sojourner, What a fantastic, informative, heart wrenching post. THANK YOU for taking the time!! I plan on saving what you wrote because it so clearly and thoroughly explains what I have difficulty conveying to friends and family.

Whenever I try to explain to my friends what a fantastic doctor my llmd is, I get emotional and tear up. I cried throughout your entire post and am so glad your daughter is in such good hands. I know in my heart that my doc is either one of the doctors you spoke to or is cut from the same cloth. It's just such a shame that most of us only manage to find these wonderful doctors at such a late stage in the game. Well, as they say, better late than never.

You and Gracie's Mom have certainly been through more than most could ever imagine and still you somehow manage to find the time and strength to help and support others. Your stories touch me on such a deep level and I only hope one day I'll be in a position to help others the way you do. Of course, that will be when my brain issues clear up and I can remember what I've learned. lol

Whenever I start to feel bad for myself I think of Gracie's Mom, you and all the other parents who have been in your shoes. It's very unfortunate that your daughter has to suffer so terribly with LD but she is very blessed to have you as her Mother.

I am so sorry for what your daughter and family have been through and will keep all of you in my prayers. I hope she makes a full recovery.

Hoping, I must step in here and state (as I have before) that my father's IDD has had him on Cipro for over a year and half now and tells him he will have to be on it for life. That is not because he wants a patient for life, but because he is so darned scared of the bacteria (enterobacter clocae) that got into my dad's prosthesis (after hip replacement)

Further, my father is not well -- he sweats most of the nite and every afternoon he begins flushing and his eyes start burning and he feels malaise, fatigue, and pain, the rest of the day. The IDD has run all the tests he cares to run on him and says he finds no evidence of infection or disease and sent him on his merry way. 'Well, you're 80 yrs old, you can't expect to feel like you used to.'

He is obviously sick and the Dr is willing to keep him on the abx, without attempting to follow thru on what is probably an infection or another disease. My dad believes his IDD is convinced the bacteria is going to kill him anyway, so what the heck on the abx for life.

So we can't say it's only LLMDs and the IDA sure can't say yrs of abx is inappropriate.

I don't know my LLMD well yet, but right off the bat he said sure I would get better. His kids were sick and they got better.

Perhaps those who don't get better are not receiving an abx to which their body/disease will respond, or they have other illnesses going on also-- in fact, we know this is common.

I'm not exactly challenging you, but I'd sure like to be a little more optimistic!

Gracie's Mom,

What a great idea and a good way to raise money for Lyme Research. I also love reading your posts. You also put your heart and soul into everything you post.

My General Practioner has taken me very seriously, even though he is not a lyme doctor. But...he is also not boxing this is to one thing, in the fear of missing something else. He has all the tests going now, just waiting for results. Some have come back, one showing my hormones are messed up, but he also said that could be from some type of infection. After tests all come back, we will go from there. I am just pretty grateful that I found a doc that DOESN'T act like I am crazy, and TOOK the time to read the lyme info I took in, and said,"do you think this is something we should at least look into, and he said "yes,definitely." BUt....I UNDERSTAND acompletely having leeriness about all of this, including trusting doctors. Never really have put much stock in them up to this point, but am pretty open right now to anyone who can help! lol.