I'm considering switching LLMDs based upon the fact that my current LLMD is congratulating me for being "treated successfully" as my C6 peptide was negative for the first time in 2 years. She's recommended 3 more weeks of oral ceftin and then I'm done and don't need to come back for 3 months.
I still have all my original symptoms, so this just doesn't feel right to me. Please keep in mind my LLMD is considered, I believe, a very reputable LLMD. A Former ILADS President.
Does anyone else's LLMD place such importance on this one test? It seems like everyone else goes by the existence of symptoms.
Thanks for your input.
Posted by Lymetoo (Member # 743) on :
Weird, very weird. I've never even had that test and woulnd't rely on ANY test to tell me "I'm cured."
I hope you can find a new LLMD in your area. Let me know if you need any names.
Posted by timaca (Member # 6911) on :
Well, one possibility is that you have killed off all the lyme, and your symptoms are due to another pathogen.
Have you been tested for HHV-6, EBV, Chlamydia Pneumonia and mycoplasma pneumonia?
These can cause similar symptoms to lyme.
Timaca
Posted by merrygirl (Member # 12041) on :
I had a C6 done awhile back and it was cconsidered negative (I think it came back .39) under .90 is considered normal by most ID docs.
I recently heard that a Lyme doc considered anything over .10 positive.
I hae been getting treated even though the C6 is "negative". I say if you still have symptoms treat until you are symptom free.......
Posted by gemofnj (Member # 15551) on :
Stoli,
I actually tested IGM positive #23 & #41 by the CDC standards, if you can believe that!! Even my regular MD said I had lyme.
So I went to a "supposedly" lyme literate doctor in my area, Dr. P, from Galloway Tsp., and he gave me a C6 petide test.
It was negative, and he told me I didnt have lyme, and that my knees would be hurting if I had lyme.
Thank God I went to a REAL LLMD after that! I am into 3 1/2 months of lyme treatment and doing better.
Posted by dmc (Member # 5102) on :
didn't know there was any female past ILADS president. Not to be snotty, just looking for a verfication.
Posted by SickRI (Member # 16803) on :
Even the bone-headed CDC agree that lyme is a clinical diagnosis, not one that is just determined from tests.
So if ANY doctor is going to look at tests only...I would be super cautious.
Posted by Stoli (Member # 11175) on :
Thanks for all your input.
To put my mind at rest I had another C6 peptide test run by a new LLMD at the same lab (MDL). It came back positive and I'm on the same meds as before. Based on those results, and the fact I still have nerve problems, stopping treatment seems foolish and I've made the switch to the new LLMD.
Who doesn't love spending another $750 initial consultation fee, right?
Posted by gemofnj (Member # 15551) on :
Wow, $750 that is insane. I image she doesnt take insurance-most LLMD's dont.
Is this how much most people pay for an initial visit?
And what about all the follow ups to come? Yikes.
Posted by Angelica (Member # 15601) on :
I paid $660 once for less then 20 minutes for a first appointment.
Posted by Stoli (Member # 11175) on :
No insurance, of course. But she did spend over an hour and a half with me.
Posted by SickRI (Member # 16803) on :
To MERRYGIRL. You said you had a C6 lyme test. Is that like the first test some docs do, the elisa?
Ours was .88, and the new LLMD doctor is treating for lyme.
Even though the old, bad doctor says that less than .90 is negative.
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by SickRI: [QB] Is that like the first test some docs do, the elisa?