Hello fellow lymies. I just wanted to share what happened at my first visit with my new LLMD.
However, I am editing this post as there is some new rule that says I cannot share my treatment protocol or any of what was said at this visit.
I'm not looking for trouble - just trying to help others. In no way do I want the doc in trouble.
I believe that I can tell you that I have a 25 year history of lyme and co. and am being treated for lyme, babs and bart with both antibiotics and supplements.
But, you may e-mail me if you are considering seeing a doc in the NYC and would like more information.
opus2828 at aol
[ 05-08-2009, 02:57 PM: Message edited by: opus2828 ]
Posted by AthinLyne (Member # 17626) on :
Please, please, please be careful with his name. I would hate for someone to use his treatment protocol against him. Good luck.
Posted by AliG (Member # 9734) on :
From what I know, it sounds spot-on to me for Babs. I'd like to know why he thinks CoQ10 with Mepron though. I though they interacted.
Maybe I should go look that up again.
I don't know about Rifampin with Mepron either. Maybe someone else will. I know Rifampin interacts with just about everything.
Incidentally, you just posted who you were going to see recently, so not posting it in this thread wouldn't really afford him any protection from someone who really wanted to know.
At least you didn't use his Name or City.
I just checked on the Rifampin interaction and found this on Rxlist:
Did he recommend increasing the dose of the Mepron when you add the Rifampin? You might want to inquire about that.
Make sure you take the Mepron with a fatty meal so you'll absorb it. Be prepared to spend several weeks having a hard time staying out of bed AND make sure you keep some clean dry clothing changes near your bed for when you wake up drenched.
At least that was my experience when I first started treating Babs. It did help immensely though.
I hope you're feeling much better soon.
hugs & prayers, Ali
Posted by JRWagner (Member # 3229) on :
Opus...your private mail box is full.
I was asking who you saw in NYC as I live here and wonder why you did not choose to see an LLMD in Westchester or Ct.
Peace, Love and Wellness, JRW
Posted by Ivy (Member # 18365) on :
Opus -
I have been looking for why I have had SOB and heart palpitations when climbing stairs or walking/biking uphill-- for 2 years!!
No doctor has been able to tell me what you just wrote about.
I have not been treated for Babesia yet since my doctors were not thinking that I had it.
Thank you for your post. I am going to bring up Babesia at my next weeks appointment.
I wish you the best with your new LLMD.
Ivy
Posted by CD57 (Member # 11749) on :
Sounds good Opus! I think I know who your doc is and have heard great things about him!
Posted by nomoremuscles (Member # 9560) on :
All sounds good.
Did he say WHY he believes in pulsing the mepron?
I have seen one other doc do this, but no one has ever been ever able to explain why?
Good luck.
Posted by Lymeorsomething (Member # 16359) on :
JRW, I think many of the CT LLMDs are marginal at best despite opinions to the contrary...
It's not uncommon for CT patients to venture out of state...
I hope the new legislation attracts some willing and able LLMDs in CT...
Posted by heiwalove (Member # 6467) on :
sounds great. i am also curious about the mepron and CoQ10 issue as well as taking rifampin and mepron together -- i thought both were contraindicated.
Posted by Hoosiers51 (Member # 15759) on :
Even though Mepron and Rifampin do have an interaction, some LLMD's do still use them together and see apparent success.
I spoke with one of my previous LLMD's about this. He didn't know the extent of the interaction until I showed him the data, but, he said that since I was concerned he wouldn't combine them in me..
...but that just so I knew he had used them together and seen success, so it's just a matter of balancing how important it is to you to be able to take both at once, etc. My guess would be it varies person to person, on if you are a good absorber of Mepron to begin with or not.
He also told me you could just increase the Mepron dose if you are worried.
Just repeating vaguely what he said in case anyone wanted one doc's take on it.
Posted by opus2828 (Member # 15407) on :
I am having mailbox problems so if you want to e-mail me you can do so at opus2828 and that would be at aol.
I will have to ask about the mepron/rifampin together thing.
I am not going to be starting the rifampin until after one month of the mepron/zith combo.
I went to pick up my zithromax today and almost fainted. I simply, cannot afford the brand name stuff.
CVS is going to talk to my doc and see if he'll agree to the generic. Otherwise, it would cost me $80 every 3 days! OMG!
I have not had luck with CT LLMD's. I have seen 2 of them and neither treated nutritionally as well as with antibiotics.
I have come to believe that to beat this, nutrition counts.
Also, neither was willing to do IV.
I may be going on IV after a few months of this oral protocol to deal with the co-infections.
My new LLMD does a lot of IV therapy and he was open to the possibility that I didn't want a PICC line.
He said I would have to drive to the infusion center everyday and they could do it with a butterfly needle.
So, e-mail me if you need more info or have any questions or things you think I should question.
Thanks so much!
Posted by seekhelp (Member # 15067) on :
Why would a doc require brand zith?
Posted by Ocean (Member # 3496) on :
Good for you Opus!!
It sounds like the appointment went really well and you have a solid plan of action.
I hope that you start seeing improvement soon, that's great =)
Take care,
Ocean
Posted by dmc (Member # 5102) on :
People you have got to stop writing details of your LLMD appointments.
Unless you get permission I don't think the LLMD wants what was said or prescribed protocals out-there.
Believe me...I happened to talk to someone on the phone who wasn't discreet & somehow someone who I never communicated with said my LLMD was furious I was writing it on a public forum.
Thank God, my LLMD knew the person I had talked to & understood it wasn't me just a misunderstanding.
locations give great indication of who you're seeing.
Posted by lpkayak (Member # 5230) on :
i aagree with dmc-this is worrisome
our problems of finding and keeping good llmds are serious and may be getting worse soon-regardless of the ct bill
i really think you guys should get in touch with each other on private emails
Posted by opus2828 (Member # 15407) on :
I edited my post some but it's doubtful anyone will know who I went to see.
There were at least 6 LLMD's within the the same area on the list I chose this one from.
This one yesterday, knew all of the others!
I know others who have seen this one and all of our protocols are very different.
I'm sharing this protocol with you all to get feedback and just put some ideas out there.
Brand name Zith works better than the generic? Is this true? I certainly hope not. If anyone knows anything about this, let me know.
Posted by ugagal (Member # 18471) on :
Sometimes I find this site very confusing....it is suppose to be a tool for helping people with Lyme but yet there are so many "restrictions" on what topics can be discussed. In this particular thread it is stated that we should not be discussing our LLMD visits or treatment protocols and on another thread people have taken issue with the discussion of LLMD fees.
If we are not suppose to discuss and/or ask questions about anything related to our treatment and doctors, then what is the point? I understand completely about not mentioning specific LLMD names on posts, but in my opinion some people on this site seem to be taking this "secrecy" code a little too far.
Posted by bettyg (Member # 6147) on :
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