How many Lymies quit their LLMD for a different LLMD and gotten better?
My story is so long and confusing that I cannot even recap it......in a nut shell, I had been treating Lyme/Babs for about three years on orals only. Started to notice improvement at this point.
We moved out of state and I started to see the only Lyme knowledgable Dr. in new state who switched everything up on me, dropped some vital meds and added a cpn diagnosis. Said I couldn't possibly still have babesia with all the malarone I had taken. I do not believe this.....
Ended up almost not being able to walk and having the most intense pain I had experienced ever.......have started traveling back to 1st LLMD and am catching a vibe that this Dr. has taken me as far as possible...
I don't know if the vibe is accurate, however, I have been backsliding physically/neurologically ever since our move. I feel as bad as I ever did.
Since I now live in CO, I can go east or west for treatment and I am thinking about the Lyme Dr. in MO.
I'm also wondering why my first LLMD had me on orals for over three years, not I.V. I brought it up at our last visit and now says since I'm out of state, can't do I.V.
Can anyone give me some advice here on switching LLMD's? Has anyone had IV treatment ordering from a Dr. out of state?
Can I talk to or email with any patience of Dr. ? in MO?
I've been fighting this over 4 years now and I'm not quitting in my current state.
Any advise is greatly appreciated. I hope this makes sence..... Posted by viva (Member # 8183) on :
I sent you a PM.
Viva
Posted by METALLlC BLUE (Member # 6628) on :
You're welcome to e-mail me about your experiences with the other LLMD's. I could use reports on what you experienced -- good or bad points, and I'll also give you information on specialists, including the doctor you're considering. I have a lot of recorded reports on him.
E-mail me: [email protected] Posted by Lymeorsomething (Member # 16359) on :
I think that doctor switching is probably fairly common. Sometimes it takes a while to find someone who thinks in a similar way and who is open-minded when it comes to treatment options--hard vs. soft....
I started off with a couple of lightweight MDs because they were close to me and it was convenient but after a year of inadequate progress I'm LLMD shopping again...and I have a couple of the more noted docs lined up...
Hang in there...
Posted by lpkayak (Member # 5230) on :
i think you need to give them 2-3 yrs...as long as you know they are ilads and know what they are doing
often they will say i can't help any more but if you go to another they want to try different stuff
i know someone who stayed with one for 7 yrs and then went to a new one and got better fast
i still say get to the best early...
the research does not show that IV is any better than orals...and it is more dangerous
Posted by tmmort (Member # 14013) on :
Thank you for your replies.
Just gonna put this question out there, cuz it's on the tip top of my bean.
Is there such a thing as the most successfull LLMD with the long-time sickies? One's that have success where other LLMD's didn't?
I sure would like to hear about it if you have knowledge or experience with this.
Posted by bettyg (Member # 6147) on :
quote:Originally posted by tmmort:
Is there such a thing as the most successfull LLMD with the long-time sickies? One's that have success where other LLMD's didn't?
NOT to my knowledge, and i've been giving out names going on 3 years. we're each unique ... no 2 alike due to lyme and/or co-infections.
were we dx promptly? dx late in life like me; 34.5 yrs. late or tutu's 40+ years, etc.
just my opinion from doing what i do on this board....
Posted by unsure445 (Member # 15962) on :
Maybe take some time off from meds and then re-test for everything.
I think you have to trust your doctor. On the other hand if you have reached a plateau you need to step treatment up to injections or an IV.
I know if I don't hear what I want to hear my instinct is to run.
Bottom line is that LLMD's that have been practicing a while have much more concrete information than anything you are going to read on-line or in a book.
Best of luck and I hope you get back on track. Onward and upward all the way!!!
Posted by lpkayak (Member # 5230) on :
yes-i know 2...but i would have to talk to you more to give out names
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