I was diagnosed by my pcp in May with lyme. + western blott, not a bulls eye rash, but close to it. Multiple symptoms, jaw pain, joint pain, fever, extreme fatique. I've been through 4 courses of oral antibiotics, still with recurring symptoms. Pcp sent me to rhematologist yesterday, who told me to forget about lyme, it was treated and should be gone, let's start you on an antidepressant, and your "aches and pains", will go away.Any thoughts on this? What should my next move be?
Posted by HEATHERKISS (Member # 6789) on :
Forget that Ruemy duck!!!! Send him to the alligator pit!
What antibioitcs have you been on? What dose? And exactly how long? Supposedly you need to be on high doses of antibiotics until you are symptom free for 2 month.
I see you posted under seeking LLMD. That's a start.
Did you read treepatrols newbie links?
Posted by cmiller (Member # 7451) on :
I've been on ceftaz, augmentin, doxycycline 100mg for 2 months, and I just finished a 20 day round of ceftin.
Posted by treepatrol (Member # 4117) on :
quote:Originally posted by cmiller: I was diagnosed by my pcp in May with lyme. + western blott, not a bulls eye rash, but close to it. Multiple symptoms, jaw pain, joint pain, fever, extreme fatique. I've been through 4 courses of oral antibiotics, still with recurring symptoms. Pcp sent me to rhematologist yesterday, who told me to forget about lyme, it was treated and should be gone, let's start you on an antidepressant, and your "aches and pains", will go away.Any thoughts on this? What should my next move be?
Newbie Links Posted by I Have Lyme Etc (Member # 7439) on :
After being sick for the last 15 yrs with Lyme and co infection and having questioned myself (mistake) and seen a rhuemy oh about 2 years ago the best advice I can give you is post in the "Looking for a Doctor" section and find an LLMD near you and go.. If it were myself, knowing you allready have a documented history of Lyme disease I wouldn't believe a word of what the rhuemy had to say. Most NON LLMDS and I guess some LLMD's are good at pushin antidepressants.. Personally for myself I think those drugs do more harm than good to most patients and thats a nice way of sayin "I don't know what your problem is so here swallow this" It gets you out of the office and I'm sure a nice kickback for the doctor... See an LLMD and go from there... Good Luck!
Posted by map1131 (Member # 2022) on :
cmiller, the rhemy I seen 6 yrs ago told me that it was a virus attacking my joints and as soon as that virus died, left my body, so would the pain.
Still waiting. My PCP started me on abx immediately after my symptoms started. Doxy, Amox, Ampicillian, Zirthomax. Nothing stopped the symptoms coming. He started sending me to idiot specialist for answers. Quack after quack.
Thank God, my PCP agreed after 2 months off abx that it was lyme and continued to treat me. He and I tried, I was chronic by then.
A good anti-depressant never cured lyme. It will help you survive mentally while you figure out how you're going to fight this war. Find youself a lyme literate doctor ASAP.
Take care, Pam
Posted by groovy2 (Member # 6304) on :
Hi cmiller It takes a long time to kill all bactira--A few months is not near long enough-- I took 600mg of Doxi for 6 months before it had Any lasting effect at all-- It you have had disease for more than a few days (weeks) before starting high doses of ABX --it is most likely going to take a couple of years to get over this-
If it only took a few weeks of treatment-there would be nobudy here to talk to--
My sister started treatment about 10 days after being bit. She took 400mg Doxi aday for 6 weeks- One year later she seams to be ok-
She was Very Lucky--Jay--
Posted by WildCondor (Member # 434) on :
Wow, another one!
Your doctor knows nothing, and the Rheumy, another moron. They are paid by insurance companies and brainwashed into saying its not Lyme. It probably is.
What doses of what antibiotics were you on and for how long?
The tests mean nothing, theyare all inaccurate, Lyme Disease is a clinical diagnosis.
You likely have recurring symptoms because you are still infected and have never been treated correctly.
Please email me anytime [email protected] and I will help you find a Lyme doctor and get you better! Posted by CaliforniaLyme (Member # 7136) on :
YES you are crazy*)*!)! (just kiddinG*)!!!! You are only crazy IF you continue to see either that Rheumie or that PCP!!! Get yourself to the nearest available Lyme doctor!!!!!!!!!!!!!!!!!!!
Have you been tested for Anaplasmosis (also known as Ehrlichiosis) and Babesiosis and Bartonella>? If the answer is NO, that right there tells you you are dealing with people who know *nothing* about TBDs!!!
When you say 4 courses- do you mean you EVER went OFF>? If so, ouch- they have NO CLUE what they are doing!!! ALSO, 4 courses of different antibiotics since MAY just says they have no clue right there!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! OUCH!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
I had a Rheumie like that in my life too- and I never went back. He seconded my PCP diagnosis of Lyme, gave me a month of Doxy and then when I was almost better said, "If it HAD been Lyme you would be CURED- so you either NEVER had Lyme or you have POST-LYME SYNDROME- either case- you don't need more antibiotics." TOTAL IDIOT!!!!! I didn't KNOW there WERE Lyme doctors so I suffered for almost a year before a friend who was a nurse found an LLMD FOR ME!!!!!!!!!!!!!!!! I tohught I was doomed to live with "Post Lyme Syndrome" forever- and unfortunately mine was very quick in progression and very deadly- thank god for my LLMD*)*!)! And appropriate treatment*!)*!)! TAHNK GOD*)!!!!!!!!!!!!!!!!!!!
Get yourself to a Lyme doc QUICKLY*)!!! Best wishes, Sarah in CA
Posted by WildCondor (Member # 434) on :
Okay, I just re-read this and saw your doses above. 20 days of Ceftin (what a joke) and 100 mg of Doxycycline twice a day is not enough. The doctor who treated you are terrible. I would gather the evidence right now, and start a journal log of what doctor gave you what and when, and then sue them for undertreatment and misdiagnosis!!!
When freshly bitten, the dose for Doxycycline is 400-600 mg per day for 6-10 weeks. You also must be checked for co-infections. 20 days of Ceftin would not do anything, it does not even cover one replication cycle of the Lyme spirochetes.
At this point you are likely going to need multiple antibiotics, possibly IV, and for many months, at stronger (correct) doses.
Please read Dr. Burrascano's Lyme Disease treatment guidelines, and we will help get you to a LLMD ASAP. http://www.ilads.org/files/burrascano_0905.pdf :-)
Posted by lou (Member # 81) on :
While we would all like to sue the docs who missed our cases at the early stage or gave us inadequate treatment, in fact the guidelines that most docs are using back THEM up, not US.
The guidelines are wrong, of course, but they cannot be changed by suing one doc (and probably losing). Back in the later 1990s, Dr. B wrote the lyme section in the textbook, Conn's Current Therapies (think that title is right?). Anyway, his correct info has been dumped in subsequent editions and now we have the Steerite view instead. That and many other sources give the average non-LLMD the info he or she is using in lyme cases.
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