posted
How can we help each other deal with this unfortunate possibility?
Whether it is because of your moving, or your doctor's moving, or your doctor's retirement, or simply your decision to change- what has helped you in the transition?
Posts: 365 | From Sylvania | Registered: Aug 2008
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posted
One poster had the foresight to find a back up doc who would work with her current Doc when faced with the possiblity that her current doc may be unable to continue practice.
Good thinking. It takes time and patience, but I'm sure relieves this poster of a lot of anxiety over the prospect of possibly losing her current doc.
Posts: 365 | From Sylvania | Registered: Aug 2008
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posted
Another poster was caught by surprise when her LLMD stopped seeing Lyme patients. She suggested either getting a referrel from your doc or asking other Lyme Patients whom they see-and whether they liked them or not.
Posts: 365 | From Sylvania | Registered: Aug 2008
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posted
The possibility of losing your LLMD is also a good reason to keep very good medical records. I have a three ring binder which I have devided into sections. I kept one of these for both myself and my child.
1. Symptoms log 2. Lab reports 3. Office notes 4. Med list, current and past 5. tests results (Spect, Mri, etc) 6. my own questions which I wrote down before each visit. 7. financial receipts
This way- should the need arise I can just haul the whole thing to the new doc.
Posts: 365 | From Sylvania | Registered: Aug 2008
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posted
Fortunately there seems to be two new doctors willing to treat pediatric lyme disease. One in Ct. and the other in RI. Hope this is reassuring to some of our parents.
Posts: 365 | From Sylvania | Registered: Aug 2008
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
This sure doesn't seem to be getting anyone's attention here. It seems like an issue people just don't want to deal with.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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onbam
Unregistered
posted
I'd find some alternative treatments to tide me over, for sre.
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quote:Originally posted by seekhelp: This sure doesn't seem to be getting anyone's attention here. It seems like an issue people just don't want to deal with.
Yeah- it's a shame too since it effects all of us-young and old. And it is so essential to be proactive on this matter. It's a very scary feeling to have no safety net.
I bet a very high percentage of posters here have had to change LLMDs for whatever reasons. Like all of Dr. B's patients, or even Dr. J's patients when he moved to the DC area.
I wish they would weigh in on how they and their docs handled the transition.
Posts: 365 | From Sylvania | Registered: Aug 2008
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quote:Originally posted by onbam: I'd find some alternative treatments to tide me over, for sre.
Excellent suggestion- and another good reason to keep a log on what alternatives have helped and what hasn't.
Posts: 365 | From Sylvania | Registered: Aug 2008
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posted
I have a backup LLMD for my daughter. I would take her to my LLMD who has already seen her one time for a second opinion.
My daughter was basically dumped by her last LLMD and I was in a panic. Luckily, I already had an appointment with her current LLMD for a second opinion and advice on supplements.
After that experience, I will always have a backup plan for her.
Posts: 984 | From US | Registered: Dec 2007
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quote:Originally posted by jkmom: I have a backup LLMD for my daughter. I would take her to my LLMD who has already seen her one time for a second opinion.
My daughter was basically dumped by her last LLMD and I was in a panic. Luckily, I already had an appointment with her current LLMD for a second opinion and advice on supplements.
After that experience, I will always have a backup plan for her.
Posts: 365 | From Sylvania | Registered: Aug 2008
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posted
I'm in the middle of trying to decide which llmd to see since mine moved. It is stressful, but less so since I've gotten good advice. Trying to decide if it's realistic for me to go see someone who is hours away since I'll need lots of follow-up.
Guess I got spoiled, my last llmd was only 20 min from my house.
If you have to change, be prepared to have to pay the $ for the initial consult all over again, even the office I was going to would charge me that to switch to their new doctor.
Thanks for the thread, diana
Posts: 857 | From northern california | Registered: Dec 2009
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posted
So glad you mentioned this- because no one likes to be blindsided by some unexpected expense!
quote:Originally posted by dogmom2:
If you have to change, be prepared to have to pay the $ for the initial consult all over again, even the office I was going to would charge me that to switch to their new doctor.
Posts: 365 | From Sylvania | Registered: Aug 2008
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posted
Posted by seekhelp- "This sure doesn't seem to be getting anyone's attention here. It seems like an issue people just don't want to deal with."
This is my take on this topic - go away.
There are more than enough things to worry about every minute of every day with TBD and most of us just do not need to add one more "what if".
Surviving minute by minute does not allow time to formulate a plan about your next LLMD. Busy being damned happy for the one you do have, if you are lucky enough to afford one.
I have been wanting to say this since yesterday, there I said it.
And JR - I agree with Tin on this, you just like to stir the pot about the kindly Dr. J.
We now return to the unpleasant day to day survival mode of the last 7 years. Posts: 252 | From USA | Registered: Sep 2003
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posted
WIZARD- having a back up plan will be one less thing to worry about as these parents and patients can testify to. But it's your choice to deal or not to deal. Anyway- hope you are feeling better having gotten that off your chest.
Having Lyme Disease has forced me to be proactive and my own advocate.
At one of Dr. J's rallies I made it a point to shake his hand. A moment in time I will always remember. He is indeed a kind and dear man and we are blessed to have him in our court(oops, wrong choice of words) We are blessed to have him working so hard for our children. I do believe he needs the children as much as they need him. I don't understand why you and Tin Cup think that I do not respect him.
I'm simply a realist, trying to live life on life's terms.
Posts: 365 | From Sylvania | Registered: Aug 2008
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merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
While I may not agree with JR aboutDoc J, he/she is entitled to their opinion.
A difference of opinion does not make someone evil. This topic is just food for thought. It happened to me (losing llmd) so its very real.
Posts: 3905 | From USA | Registered: May 2007
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posted
This is my opinion of Dr. J.: "At one of Dr. J's rallies I made it a point to shake his hand. A moment in time I will always remember. He is indeed a kind and dear man and we are blessed to have him..."
quote:Originally posted by merrygirl: While I may not agree with JR aboutDoc J, he/she is entitled to their opinion.
A difference of opinion does not make someone evil. This topic is just food for thought. It happened to me (losing llmd) so its very real.
Posts: 365 | From Sylvania | Registered: Aug 2008
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posted
Just noticed another excellent point in Seeking a Doctor Forum.
If you have access to a support group in your area-ask around to see what other LLMDs are within striking distance.
This is how I found my LLMD-by asking at a local support group meeting. Actually I was given two names at the same time-so I was set. I am very grateful for this.
Posts: 365 | From Sylvania | Registered: Aug 2008
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posted
My first LLMD unfortunately died before we could get going with significant therapy. His office did, however, steer me to other doctors who turned out to be quite good.
But the best one we found when we followed the testimony before the CDC to advocate changing their guidelines to include long term antibiotic therapy. His statements were most impressive, as were many of the speakers.
Then it turned out that he worked with one of the doctors I had been referred to. I think they all seem to know each other....but their approaches do vary.
My doc has published countless papers in many well known journals on his research. His track record speaks for itself.
After 22 years of this mess I have learned to ask for copies of all test results and have even gotten copies of handwritten notes by doctors who were mystified 20 years ago.
I even had my thyroid removed and had two sinus surgeries...all at Stanford! I now realize that they had no idea what they were dealing with. I was simply told that I had some sort of autoimmune disease.
The symptoms were there, but they were called idiopathic. Now with current testing available we know what bugs we are battling. And I am at long last improving!
Be sure to go prepared to whomever you choose....list of meds, current test results, list of symptoms, well thought out questions. Prepare a packet in a clean folder to give to the doctor.
My packet even included a remarkable photo of 4 deer grazing on my flowers....up 17 steps to my front porch they had come! They even got the ones beside the front door! They took naps on our front lawn, for heaven's sake!
That photo is for all the people who think there is no Lyme disease in California!
Some questions may be "How long have you been treating lyme and coinfections? How many patients and at what stages of their illness have you seen?
What tests do you propose to run and what labs do you use for them? (My doc uses Igenex, Lab Corp and National Jewish Hospital exclusively)
How many patients got better? What therapies seem to work best? Have you seen Dr. B's Treatment Guidelines and what is your opinion of it?
Good luck and keep us all posted!
Farraday
-------------------- DOCTOR: "I don't think you are sick." PATIENT: "We are all entitled to our opinions. I don't think you are a doctor." Posts: 697 | From Northern California | Registered: Jul 2009
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posted
Farraday- your post is full of wisdom and humor! Thank you so much for telling us of your experience. I do hope things get better for your husband , too.
Posts: 365 | From Sylvania | Registered: Aug 2008
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
I suddenly lost my LLMD this spring under shocking circumstances. It's been a nightmare. I'm hoping to get back on
tx soon, but it's been a long, difficult, and extremely expensive journey. ANd I'm not even to tx yet really!
People around me who don't have LD can't begin to imagine how bad this is. And the financial stress on top of it all has been
horrific (having to pay almost $1,000 for the first visit, plus $860 for new Igenex testing, all out-of-pocket---when I already had plenty of + tests!!).
Add to that, having to see yet again another dr, because the first didn't seem willing to put me back on IV. And even that dr
doesn't want to do so yet . . . still waiting and paying more money for more tests and visits. It makes me want to give up (but I can't, of course).
Posts: 3792 | From around | Registered: Mar 2008
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posted
Rumigirl-man this really really sucks. Take a deep breath,actually take a lot of slow deep breaths-oxygen is good for the body.
Meanwhile-have you been to an endocrinologist? There's nothing like antibiotics to kill Bb of course-but perhaps going to mainstream docs can treat side effects of Lyme until you can get back into full mode attack.
$1,000 for the first visit? UNBELIEVABLE!
Really-keep us posted-orals are better than nothing if IV is not possible.
quote:Originally posted by Rumigirl: I suddenly lost my LLMD this spring under shocking circumstances. It's been a nightmare. I'm hoping to get back on
tx soon, but it's been a long, difficult, and extremely expensive journey. ANd I'm not even to tx yet really!
People around me who don't have LD can't begin to imagine how bad this is. And the financial stress on top of it all has been
horrific (having to pay almost $1,000 for the first visit, plus $860 for new Igenex testing, all out-of-pocket---when I already had plenty of + tests!!).
Add to that, having to see yet again another dr, because the first didn't seem willing to put me back on IV. And even that dr
doesn't want to do so yet . . . still waiting and paying more money for more tests and visits. It makes me want to give up (but I can't, of course).
Posts: 365 | From Sylvania | Registered: Aug 2008
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It seems like an issue people just don't want to deal with.
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