posted
My LLMD is having "personal issues" as of late and my family and I have begun the arduous task of trying to find a new one. All 4 of us have tested positive. I have be receiving treatment for 1 1/2 years for lyme and bart, and the rest for about a year from the same doc.
We found out about a month ago that our LLMD was unable to practice for now and he gave us a referral for a replacement. We had our first appointment with the new doc yesterday and, I'll be honest, I left feeling a little wary.
He wants to put my husband and I back on doxy even though we've been taking rifampin and ceftin, my daughter back on amox which she was on for 6 months beginning her treatment. I feel lik we just stepped backwards.
He also wants to try a more natural approach with nutrition & supplements and ECP (external counterpulsation) therapy. It's used for patients that have heart problems. He explained that this will help with our circulation issues such as muscle cramping, tingling, cold extremities, etc.
He also said that my symptoms are pointing to CFS, Fibro, and MS and wants me to have an MRI. And also mentioned that if we are still showing lyme symptoms that he normally does IV treatments. I just don't know what to think about all of this.
HELP!
Posts: 95 | From IL | Registered: Jun 2010
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Rivendell
Frequent Contributor (1K+ posts)
Member # 19922
posted
Sending you a PM.
Posts: 1358 | From Midwest | Registered: Apr 2009
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Dogsandcats
Frequent Contributor (1K+ posts)
Member # 28544
posted
There are alot of things I wished I had or had not done with my lyme treatment.
One of the best things I have learned is trust my instincts. I would get so desperate to feel better I would buy products I didn't need. I didn't trust my gut.
So my only tidbit of advice is -trust your instincts. If this isn't the right doc or protocol, as painful as it is = keep looking.
Or try to talk to your doc and explain your concerns, but that isn't always easy either.
Trust your gut, no matter how sick you are...it still will guide you if you listen.
-------------------- God will prepare everything for our perfect happiness in heaven, and if it takes my dog being there, I believe he'll be there.
Billy Graham Posts: 1967 | From California | Registered: Oct 2010
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posted
TY Rivendell, I got it! sent you a response, too.
Dogs (had to laugh at similarity in names, LOL!), that is very good advice and I'm weighing that very carefully. My husband wants to give this guy a chance but I'm really wondering how lyme literate this doc really is.
It's a know Lyme fact that we are misdiagnosed with CFS, Fibro, MS, etc. because the lyme mimics those things but for this doc to say that that's what I had really made me uneasy...
Posts: 95 | From IL | Registered: Jun 2010
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posted
Rivendell, my message didn't go thru...says your box is full. but i got yours, thank you for the info!
Posts: 95 | From IL | Registered: Jun 2010
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posted
He also said that my symptoms are pointing to CFS, Fibro, and MS ..
--------
BIG RED FLAG!!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Ditto to TuTu's exclamation:
"He also said that my symptoms are pointing to CFS, Fibro, and MS ..
-------- BIG RED FLAG!!!" ----------
Run. Do not walk . . . I would not return to this doctor. Obviously, he's either getting pressure to not treat from a full menu of choices - or he is not well enough educated.
Sorry to say, I think you need a different doctor.
As for that stimulation stuff, Dr. B says "NO STIM" as in the electrical stimulation used by some physical therapists.
I think that would also apply to (external counterpulsation) therapy. It could do more harm than good.
1) Spirochetes HATE VIBRATION and will react accordingly.
2) It could cause terrible stress to the fight or flight hormones that are already so clobbered by lyme & co.
==================================
Cardiac thread link in post below
==================================
You say "He also wants to try a more natural approach with nutrition & supplements"
Well, is he FULLY TRAINED in that area?
If you are looking to a more integrative approach, you might try to find someone who fits in here, with proper formal training in natural methods AND in lyme, through ILADS:
Links to many articles and books by holistic-minded LL doctors of various degrees who all have this basic approach in common:
Understanding of the importance of addressing the infection(s) fully head-on with specific measures;
Knowing that support supplements are important, but NEVER enough alone. And knowing which supplements have direct impact, which are only support and which are both.
You can compare and contrast many approaches.
BASIC HERBAL EDUCATIONAL links, and
BODY WORK links with safety tailored to lyme patients,
RIFE links,
BIONIC 880 (& PE-1) links, and
LOW HEAT INFRARED SAUNA detail. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
External counterpulsation not effective as a treatment for heart failure
Published on February 23, 2006
A new review of studies supports the government's opinion that too little evidence exists to support a device that uses balloon-like pants as a treatment for heart failure.
. . .
In ECP, patients wear a set of balloon-like pants programmed to inflate in sequence with the heart beat.
Pneumatic cuffs fit snugly around the legs and thighs and are designed to force oxygen-rich blood to the top half of the body to fuel the heart.
"The theory is that it allows the heart to rest and renew itself," said Brent O'Connell, M.D., a member of the Association's Medical Advisory Panel, which oversaw the TEC research review. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
thank you guys for your honesty and all of the info Keebler! i already know we won't be returning to this doctor, it's a bitter pill to swollow after plopping down a chunk of change to see him. UGH, so frustrating!!!
the question remains, why would my LLMD recommend him? what list was he looking at when he was referring all of his patients?
the majority of the appointment yesterday (although very thorough with blood tests, EKG's and stress tests done) was talking about that ECP machine and how wonderful it is. i already knew before leaving that office that that treatment was not going to be covered by insurance and that we wouldn't qualify anyway if it was since we don't have heart problems.
i'm so glad i posted here, i had no idea that stim could cause even worse problems. i will need a suggestion for another dr in/near IL. if anyone can PM me suggestions, i would really appreciate it. thanks! (will also post in seeking doctor section)
Posts: 95 | From IL | Registered: Jun 2010
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poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
Your doctor probably did not have personal experience with the new guy, and knew him only as a colleague. Or maybe the new guy is cooling off because he is afraid of the medical board. It would be better if they would just say this, but sometimes they just change their behavior without giving the real reason.
This is why medical boards don't have to take down all the doctors who treat lyme. They use one or two as examples of what can happen, and that scares off others.
Posts: 2888 | From USA | Registered: Mar 2004
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posted
In had a similar problem lately. The doctor wasn't an LLMD, but I was told my an LLND that he was good and open to treating Lyme.
I wasted 5 MONHTS with him! I decided to let him do all his tests, and to try his "wait and sees", and fianlly after 5 months, he put me on antibiotics. Of course, I had already gone from 78-80% better, to extreme fatigue and muscle pain, brain fog etc. etc. Then, after 1 month of Biaxin, he said he would give me 1 month more and that was it.
I was reluctant to leave because I had invested a lot of money (and time). I had to join his private clinic to see him, and if I leave before the year is up, I might not get my money back. But it was not worth letting myself get so sick all over again! Do what you need to do!
There is a concept when they talk about group strategies in business. People tend to become REALLy commit ed to poor decisions because they feel like they have already committed so much time and energy to this solution that they need to make it work. So they just keep pouring more money in. Don't do that! It doesn't work! Cut your losses
Posts: 503 | From Alberta, Canada | Registered: Jun 2009
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posted
you're right, poppy, he may have just "heard" of him and thought he might be a good fit. i'm not sure. i also wonder why he didn't refer us to the two other LLMD's that were near him...maybe he was just trying to keep us in our state.
never the less, i did get some good leads via pm's from my other post in seeking. i have lots of calls to make and research to do on that but hopefully we'll get back on track!
nicole, you're absolutely right, sometimes you sit and wait for things to get better because you don't want to loose all the time, effort, money that you pour into it but sometimes the best thing to do is cut your losses! i'm glad you decided to do what was right for you and that you're seeing someone that's making you well.
i turned a corner last april and have been on a plateau for several months now so i'm hoping the next doc can get me in full remission soon. my husband turned his corner just a few months ago and my daughter is starting to regress. i really need someone who knows what they are doing, we don't need (no one does) any set backs!!
Posts: 95 | From IL | Registered: Jun 2010
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Q: why would your LLMD recommend him?
He may have been required to do so if there was any action by his medical board. Sometimes, they tell the doctor whom they MUST refer patients to if there are any legal stipulations.
There may also be some matters of business contract. -
[ 01-16-2012, 07:00 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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