I have been suffering from chronic lyme for going on six years. I was bitten on the Peace River in FL while camping there.
But my doctor back home in Alabama said you couldn't get lyme in Florida or Alabama, and that the EM rash I developed was just an allergic reaction to the anti-coagulant from the tick!!!
I cannot seem to find a LLMD anywhere near me, or affordable, as I am a 39 y/o male with Social Security Disability my only income.
Due to the depression, social anxiety, and chronic candida infection, as well as many endocrine dysfunctions, all related to the lyme I believe.
My CD57 scores were in the 60's and I tested positive for lyme with the lyme band and spirochete band on an Igenex IgG Western Blot
(by Igenex and ILADS guidelines, not the CDC/IDSA...I only had 4 bands instead of the 5, I think, required by the CDC/IDSA).
My symptoms are mostly entirely neurolyme, until the last few months, shoulder and hip joint pain has started.
Anyway, please PM or e-mail me with any doctors names in or near S.E. Alabama, near Dothan...or just anywhere that may take Medicare/Alabama Medicaid..or a payment plan if possible.
Thanks so much and good luck to everyone suffering from this terrible affliction!!!
JIM
Posted by bettyg (Member # 6147) on :
jim, NONE IN ALABAMA!
check your private messages; i sent you GEORGIA AND LOUISIANA llmds; found in MY PROFILE! good luck.
florida llmds are MORE expensive yet!! ****************************************
i'm NOT aware of any llmds who take medicare/medicaid payments! with us, it's ALL OUT OF POCKETS. //////////////////////////
few people are lucky enough to have insurance in their NETWORK DRS!!
Posted by Lymetoo (Member # 743) on :
Oh dear. You may have to try educating your doctor.
Continue to do research and take printed info to that dumb DUCK!!
Who ran the CD57 and the Igenex test?
Posted by JimP. (Member # 15890) on :
Thanks Betty and LymeToo for the info/reply. I will try and call some of them tomorrow, Betty, but I don't know if I can afford it...sort of a Catch 22 situation.
And LymeToo, the doc that ran the Igenex and CD57 tests was the same one who told me you couldn't get lyme in AL or FL.
And that the EM rash was an allergic reaction to the tick's anti-coagulant. He ran them about 7 months ago after I did educate him.
But he is 78y/o and has had an abdominal aneurysm and a stroke and only practices part-time now, and basically can't remember much anyway.
And he ordered our hospital to administer Bicillin LA injections(4x a week) and an oral anti-biotic out of Canada, called Roxithromycin daily(I found an article from the U.K. Lancet
that said the Roxi and a Sulfa anti-biotic(I can't remember which, but I'm allergic to Sulfa, so we substited the BicillinLA)cured a man that had suffered from lyme for 7 years, which is why we tried it)
But one (former) LLMD near me in Elba, AL already has been "discouraged" by the state medical board or for some other reason, he won't even mention lyme anymore.
So our hospital refused to administer the injections, saying I didn't meet the CDC guidelines, blah, blah, ;-)
I ended up having my doctor's office manager write a paper saying I was going to get the meds off the internet and self-medicate, against my doc's advice, so
the doc felt it would be safer to write the Rx's, but he didn't agree with me and it was against medical advice.
He wrote for an epinephrine pen in case of an allergic reaction to the penicillin shots, and I gave them to myself at home for 6 weeks with the oral med also.
I felt better than I have in forever, until a couple of months ago, I got the flu and pneumonia and the ER docs gave me several steroid shots, etc. and now the lyme(candida too) is back worse than ever!!
Sorry so long...I am a bit wordy until I wear out like I am now and sure you are too, ;-)
Thanks again to both you and Betty for your replies!!!
Jim
Posted by bettyg (Member # 6147) on :
jim, you are welcome!
yes, i understand about $$ treatments.
are you still working? on SSDI? ON ssi?
IF YOU GOT MY NEWBIE PACKAGE, use the search feature ...edit, find, and type in
financial burdens compiled by melanie reber! print that off...20-30 pages of DETAILS GALORE.
remember you are INVESTING IN YOUR FUTURE FOR QUALITY LIFE! so do whatever you must ok Posted by JimP. (Member # 15890) on :
Betty,
I am on SSDI since 1999 I think it was, and my dad was just diagnosed with Alzheimer's(moderate stage)
And my mom is on SSDI for peripheral neuropathy/rheumatoid arthritis. They are both in their late 70's, and also on VERY limited incomes.
So, we are all in a real bind, and I need to take care of them, but I don't have the energy most the time to take care of myself unfortunately.
But others have it even worse, so I really can't complain too much, ;-)
I will look over the financial burden info you sent in the newbie pkg.
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