Topic: What do your LLMDs tell you? That you will you recover?
Areneli
Frequent Contributor (1K+ posts)
Member # 6740
posted
How optymistic are your LLMDs that treat you? Do they assure you that you may be healthy again?
Posts: 1538 | From Planet Earth | Registered: Jan 2005
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liz28
Unregistered
posted
I've learned some painful lessons about LLMDs.
Always remember two things: LLMDs are so overwhelmed by patients that we all blur together, even though you can probably remember every detail about your case, and LLMDs who choose to fight Lyme are not always the people whose talents or interests are best suited to this kind of work. They are heroic, they are saving our lives, but they are not all-seeing healers, and frequently, they don't have the time or energy to always keep up with developments in the field.
For example, my super-famous, extremely talented LLMD told me I could not possibly have bartonella or babesia, and that my only hope was to go on these wacky herbs that cost a bundle, and stop taking abx. Of course, the herbs didn't work and I just found out I have two co-infections. If I had just stood up to him, maybe I could have saved a lost year and a half of my life.
If you read through Lymenet, though, you will find discussions of nearly every available treatment out there. No one is holding out on you here--just be sure to do a lot of research, and never, ever let your desire to get well keep you from acting on your own behalf.
Also, most treatments that work show some sort of effect within two weeks, even if it's a herx. If you are spending $1000 a month on... some sort of treatment, and not seeing results, be suspicious.
posted
I've been afraid to ask, I've felt better, relapsed, felt better, relapsed, now I'm gonna go with iV abx and hope for the best, I just want my brain back and also to get rid of the tingling and pain. sucks
Posts: 55 | From Maine | Registered: Jan 2005
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posted
I went to a very busy Lyme doc, too. However, he was amazing- just took one thing at a time, and was very thorough with each patient, though sometimes got behind schedule due to this. He was like most doctors I've had- couldn't really assure me that I would get better. However, he did manage, nevertheless, to keep me hopeful. He was the only doc who ever told me when he didn't know the answer to a question. And he was clearly reading all the information he could get his hands on, includng info on herbal and chinese treatments. I am very glad I found him- a great human being. But I went to several doctors prior to going to him who, when I didn't respond like I was "supposed to", told me it "must be something else going on"; that I couldn't still have lyme after 6 weeks of doxy... They got frustrated, and threw up their hands rather than seeking info on it, or doubting faulty ..'info'.... they had been fed. Doctors are human beings- there's a whole spectrum of scenarios that can go down. Yo just have to be ready for anything. (and keep reading what everyone writes, gleaning as much as you can from each post. (unless it is clearly a misleading post, but if you suspect such, ask a question. DaveS Posts: 4567 | From ithaca, NY, usa | Registered: Nov 2000
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posted
My doc is the eternal optimist and believes completely that every one of his patients is able to get well. It's simply a matter of finding the right treatment for that person.
kam
Honored Contributor (10K+ posts)
Member # 3410
posted
I have beleived from the beginning that I will get my health back or at least 80 or 90 percent of it.
My LLMD is the only doc I have seen that has that same goal.
On my first visit I saw a person in his waiting room who had 90% of her health back. She said she had lyme a long time before seeing this doc and that it took about 3 years to regain her health.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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I agree, our doctor is awesome! He works with each one of us as an individual, and is open to new ideas. I've never met such a wonderful doctor that cares so much about his patients.
Gail
Posts: 142 | From Flyover Country | Registered: Aug 2004
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posted
My LLMD is optimistic. I have seen him once. Prior to that visit I emailed my symptoms to him. In his return email he referred to helping me get back to "normal health". During my visit which went very well he did not mention the possibility of not recovering. He did not say MAY be healthy again but rather WILL be healthy again.
I was and am very grateful for his optimism. I, of course, sometimes have my doubts but since seeing this Dr. and changing meds I am improving and thinking that maybe I will get rid of Lyme.
Thanks for another great question Areneli. You are a real asset to this board. h&s
posted
Have chronical neuro-Lyme - probably all my life.
My LLMD told me that I cannot get rid of the disease completely anymore but that he can reduce my symptoms to 1-2%. But I'd need antibiotic fresh-ups from time to time.
My family duck saw no problem at all: 2 weeks of Rocephin and I'd be cured! Although I think I know better, sometimes I wonder if it would have worked if I had tried it.
quote:Originally posted by liz28: I've learned some painful lessons about LLMDs.
For example, my super-famous, extremely talented LLMD told me I could not possibly have bartonella or babesia, and that my only hope was to go on these wacky herbs that cost a bundle, and stop taking abx. Of course, the herbs didn't work and I just found out I have two co-infections. If I had just stood up to him, maybe I could have saved a lost year and a half of my life.
Did the doctor you're talking about ever do a lyme test on you, like the Bowen?
posted
On my first visit my LLMD was the first doctor to EVER give me hope about getting anywhere close to well. When I first started he always said with the right medications and the right response to them I would get better.
I am a LOT better at least 80% from the first time I saw him. Now he is saying I could be in remission as early as Easter. He hasn't been wrong so far so I have no reason to doubt him. It just all goes back to the right medication and the right response to it. Stacie
Posts: 220 | From Louisiana | Registered: Jun 2004
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TheCrimeOfLyme
Frequent Contributor (1K+ posts)
Member # 4019
posted
My LLMD told me that she didn't know if she could cure me, and didn't know if she couldn't because she wasn't psychic and didn't know how long I had it and what my outcome could be.
She did promise me however that she would give it her full to make my symptoms disappear, and if that results in cure, then good. If not, then still good.
Posts: 3169 | From Greensburg, Pennsylvania | Registered: Jun 2003
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