posted
Can somebody please tell me what website to go to print out information about Lyme Disease. My OBGYN won't believe that I have it even after a postivie blood test and antibiotic treatments for over 2 years. He wants me to get off ALL antibiotics because he feels they will kill me or when I really need them for something they won't work. This is the first year he ever questioned me about the disease and my diganosis over 2 years ago. He quoted lots of statistics and info about Lyme and of course I was BRAIN DEAD and couldn't think what to come back to him with. I want to ENLIGHTEN him some but not sure where to start. I DEFINITELY won't be doing his advice. I have a wonderful LLMD but of course my OBGYN thinks he's nuts too. GO FIGURE. HELPPPPPPP thanks so much.
-------------------- Debbie V. Posts: 125 | From Louisiana | Registered: Oct 2004
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Jill E.
Frequent Contributor (1K+ posts)
Member # 9121
posted
In addition to the Newbie links here, I always print out stuff from the International Lyme and Associated Diseases website (www.ilads.org) for trying to educate tunnel-vision doctors that there are two approaches to treating Lyme, etc.
But most of the doctors I've encountered just won't believe in anything but the ridiculous Infectious Disease standard of a little Doxycyline and you're cured - they don't understand the concept of disseminated, chronic Lyme.
I try to use the analogy of cancer - that when it's caught early still in one tumor, there is a better chance of cure than when it has metastisized and needs much more aggressive treatment. Our chronic Lyme is more like metastisized cancer - it has already spread. Plus it's a stealth pathogen and most of us have coinfections.
All my specialists think that I and my LLMD are dealing with dangerous, unnecessary treatment. Even my endocrinologist refused to believe that Lyme could affect the thyroid, even though my tests became abnormal again after years of being normal.
My internist, who knows nothing of Lyme but has been the only non-LLMD to stand by me throughout this, has admitted that I certainly seem better now in treatment than when I was going misdiagnosed and untreated.
However, he has the same concern that I will become antibiotic resistant and will have no options if I get pneumonia or strep. My answer is that I have to treat the disease I have, and not worry about diseases I may never have. I also got a Pneumovax (pneumonia vaccine) just to allay his fears about that disease.
Jill
-------------------- If laughter is the best medicine, why hasn't stand-up comedy cured me? Posts: 1773 | From San Diego | Registered: Apr 2006
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posted
How ironic that your ob/gyn won't believe you. My ob/gyn was the only one out of 13 doctors that would agree to run a Lyme test and yes it came back positive. Hiker
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 10171 | From Illinois | Registered: Aug 2004
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posted
thank you both so much for replying. Thanks for all the good information and how true what you said really is. I too am dealing with the disease NOW and can't worry about other infections that might come along. I am gathering everything I can find to send to him and if he doesn't like it? TOO BAD. I trust my LLMD more than any other doctor. He's a personal friend and life saver for me. He tells my family that 2 years ago he raised me from the dead. And they know and believe it. I don't EVER want to go back to that so I'll follow his instructions. Oh yeah, the OBGYN said you are better now than you were 2-3 years ago. DUHHHHH wonder why? The LLMD found the problem and is working to fix it. It really is frustrating making drs and people understand. So the best advice is stick with whatever is working. God bless you all. I'm in this with you and you're all in my prayers.
-------------------- Debbie V. Posts: 125 | From Louisiana | Registered: Oct 2004
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posted
"So the best advice is stick with whatever is working. God bless you all. I'm in this with you and you're all in my prayers."
Amen to that!
Posts: 559 | From Cary, NC | Registered: May 2006
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
Dido to the other above posters.
Stick to whats working.
Some doctors just can't and don't want to be enlightened.
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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bettyg
Unregistered
posted
Breaking this up so we neuro lymies can read/comprehend it by hitting enter often and double spacing EACH paragraph.
Deb, please break up your 2nd long, continuous post please, and do this in the future. Thanks we appreciate it.
quote:Originally posted by vandeb:
Can somebody please tell me what website to go to print out information about Lyme Disease.
My OBGYN won't believe that I have it even after a postivie blood test and antibiotic treatments for over 2 years.
He wants me to get off ALL antibiotics because he feels they will kill me or when I really need them for something they won't work.
This is the first year he ever questioned me about the disease and my diganosis over 2 years ago.
He quoted lots of statistics and info about Lyme and of course I was BRAIN DEAD and couldn't think what to come back to him with.
I want to ENLIGHTEN him some but not sure where to start. I DEFINITELY won't be doing his advice.
I have a wonderful LLMD but of course my OBGYN thinks he's nuts too. GO FIGURE. HELP thanks so much.
Go to TREEPATROL'S NEWBIE LINKS and print off Dr. B's 05 lyme treatment guidelines. 33 pages. Ask his office to make a copy for themselves for your MD.
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posted
Maybe these other docs should butt out, since they are not being asked to treat you for lyme. If you had some other disease that required a specialist, would they be questioning that treatment also?
I think docs who exceed their scope of work are dangerous to you and your LLMD. Try to think of a way to politely explain that his opinion on your lyme treatment is not being solicited, that you are there to see him only for.......whatever it is. If there is resistance, then maybe ask politely if he would be second guessing your treatment for other diseases too. And finally, any doc who makes himself obnoxious can be replaced.
If you try educating them, then reasoning, and nothing works, maybe it is time to say goodbye.
Posts: 8430 | From Not available | Registered: Oct 2000
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