LymeNet Flash: advice for llmd visit

This is topic advice for llmd visit in forum Medical Questions at LymeNet Flash.

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Posted by lifewithlyme (Member # 4557) on :

Hello all,
I just wanted to tell you guys that this site has really saved me. I had lyme for 4.5 years before getting a diagnosis; now in my 8th month of orals. I feel about 70 percent better, which I am greatful for; the magic combo for me has been biaxin/plaquenil/ceftin. my symptoms are primarily physical in nature. My question is: my llmd has said that he doesn't really like anyone on a particular abx for longer than four months; which is about where I am with this combo...but I'd like to stay on it longer. I am only getting better, I haven't plateued, and I have NEVER once had g.i. problems...do you think he would have any argument to this? I'm from ct; you can guess who my dr. is.That man saved me. I just hope he lets me ride this out further. And to all those reading this; I hope this gives more hope than frustration. Four months ago I wanted to die. I have now run a few times, something I NEVER thought I would do again; I'm out hiking with the best of them. A year ago I could barely get out of bed. Do not loose faith; embrace the good moments , and try to breath deeply and keep your head down to the wind when it gets stormy; you'll get there. I'm far from cured. But I feel now farther from death than I have previously felt.

Take care; any advice would be appreciated.
Sarah

Posted by 3greatkids (Member # 3838) on :

Thanks for the inspiration. Yes, this is one tough battle but great to hear others have come so far and moving forward. Blessings to you and keep up the good job!

Posted by WildCondor on :

You know what? Your LLMD's statement that he doesnt like anyone on antibiotics for more than 4 months...is MESSED UP!

I dont care who he is or how many people say he is wonderful, that is just bad medicine. Every single case of Lyme disease is different. Each patient must be treated according to their own case, personal history, symptoms, co-infection status and response to therapy. To say that nodody should have more than 4 months is like having a cookie cutter approach and saying Lyme disease is all the same.

My advice, get to new LLMD, and quickly.

You cant go off your meds when you are finally starting to feel better. You must be 100% symptom free and then some for 2 months and then keep going on maintenance therapy.

Do some research and dont settle for anything less than you deserve.
Nothing is more important than your health.
It is great news that you are improving, and you have to continue, if you stop your meds, you will crash.

------------------
Lyme Disease Help
http://www.wildcondor.com

Posted by cootiegirl (Member # 3216) on :

Well I don't necessarily agree with Condor's reply, but that's ok. We agree to disagree around here.

I don't know the entirety of your conversation with your doctor, but I think I would ask him for clarification. Was he speaking in generalities, or is that his hard and fast policy? Is there a rationale in his understanding of lyme disease as to why 4 months is the 'cut off' time? Does he do this with all his patients, or with certain drug combos? If he does decide to stop the drug combo you are on, what is he planning on using instead?

I had a conversation with my llmd about the length of different combos. I thought that he might be changing my combos too quickly - that the effect may not be there for a couple of months. He told me that based on his experience, that if the drug combos are going to work, they work within 4 weeks or so. And 'works' means that he looks at the patient's symptology - better, worse or the same.

I asked him about those cases here where a few people didn't see any response for maybe three or four months. He told me that in his experience, these were the exception rather than the rule.

The treatment of this disease is such a crap shoot. I think the llmd's do the best they can trying to find the right combinations of meds, be it oral or iv, and at the same time, trying to minimize the impact that the drugs can have on our systems. I know of some lyme docs that give their patients a short 'break' from abx. Don't really know if this is a good thing, from the 'killing the ketes' perspective, but it makes sense for the person's body to take a break. I haven't heard of any particular time limit for the use of abx, other than by ducks....

Bottom line, you have to have confidence in the doc treating you. If he doesn't aswer your questions to your satisfaction, then you may need to heed Condor's advice and look around. But get clarification first....our minds don't always get the information correct.
cootiegirl

Posted by lifewithlyme (Member # 4557) on :

Thanks for all your replies, guys. I didn't mean to make him look bad; i really like the guy. I think he just doesn't like to stay on one particular combo for longer than four months; then he likes to change to another one. But i've been doing so well and just continue to improve on this combo; I hope he lets me stay on it longer...we'll see; my appt. is tomorrow...

Posted by cindy_leigh (Member # 3514) on :

same LLMD as me, right?? If I remember correctly, I only switched to a different med when I was not continuing to imporve on the current one. I never has any as long as 4 months, anyway. Probably the longest with one was about 2 months.