Hi! I am hoping someone might have some advice. My husband has late stage neuro lyme disease. Positive test from Igenex.
We have an LLMD (great guy) who has been treating him with success. He has been sick for 3 years.He was in really bad shape (wheelchair) by the time we got the positive test. He has been treated for almost a year. He still has a really long way to go, but most of the symptoms are under control.
Now, here's the problem. We decided it was time to start aggressive physiotherapy to regain his muscle and function.
We started on an outpatient basis through our local hospital and then they told us he should go in for their "intensive physiotherapy program". We thought it was a good idea but we had to see the doctor in charge of the program before we could get in.
Turns out, THIS DOCTOR IS A DUCK!!!!!!!!!!
She told us she knew nothing of lyme disease and because of my husband's neurological problems, she didn't think it could be lyme. It is her opinion that he has a neurological disease instead (ALS or MS). This physio duck also told us that she was "good friends" with some of the ID and Neuro ducks we had already seen 3 years ago.
We have already been to lots of NON LLMDs ID and Neuro ducks and felt so fortunate that we had found an LLMD (not anywhere near this hospital, we drive 4 hours to see him) who is helping.
Now, turns out there is very little physio in hospital just a lot of unneccesary testing I feel is to support this physio duck's opinion. My husband is unhappy and vulnerable.
Anybody, have any suggestions on what we should do here?
Posted by lou (Member # 81) on :
Don't do the testing, especially if there isn't much physiotherapy available there anyway. He could end up with stuff in his medical records that would backfire on him.
Is it necessary to have an approved diagnosis before getting physiotherapy? I would have thought this would be available on symptomology alone.
If this hospital doesn't offer much physiotherapy, maybe you should look elsewhere. A YMCA that I used to go to had a dedicated space for health related physical therapy. Don't know what the qualifications were for using it, beyond YMCA membership.
Have you asked this question on the Canadian Lyme website? They might have better suggestions since they will know the health system better than Americans.
Posted by vitch (Member # 8094) on :
Years ago Dr B had a handout for physical therapy. Perhaps your LLMD has one and the two of you can do it yourselves. Some of that is just common sense.
Ducks are nothing but trouble and I avoid them whenever possible.
Posted by dmc (Member # 5102) on :
Can your LLMD just give you a prescription for PT so you can go to another facility? My LLMD gave me one and the physical therapist evaluated my "needs" and they both worked out a program.
There are numerous PT places independant of any particular doctor. Just needed a "prescription" from a doctor to authorize for insurance payment. This way my LLMD gets a report of my progress straight from the PT.
Good luck.
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by dmc: Can your LLMD just give you a prescription for PT so you can go to another facility? My LLMD gave me one and the physical therapist evaluated my "needs" and they both worked out a program.
I agree and also agree with lou. Forget the testing as it most surely WOULD backfire on him.
Posted by 5dana8 (Member # 7935) on :
Hey long2bebetter
Glad to hear your husband is doing btter and ready for PT
Sorry about the duck.
Does your LLD know any PT's that could help you? Or anyone one of his patients been treated with good results by a PT.
Dump the duck and don't look back. They are a waste of breath,time money and energy because you will never change their short sided, small minded attitude. I agree with lymetoo about the testing. The results if not done right could backfire.
I hope you can find a PT who will be gentle with him and be willing to work with your LLD.
Take care
Posted by Aniek (Member # 5374) on :
I have purposefully worked with a Duck in the past, in a limited capacity. I found a fantastic pain specialist, before my lyme diagnosis. He refused to believe I had lyme, but I still worked with him until I had my pain under control. I couldn't find a doctor who understand how pain worked and how pain medications interacted better.
But, I eventually had to stop seeing him because I couldn't swallow my pride anymore. But my pain was under control then.
Something like physio is different. They don't need to know lyme, because many don't, but they need to be willing to take it easy with your husband and learn how his body reacts. My pt doesn't know much about lyme, but he is excellent at learning from how my body reacts and not pushing.
I also think your husband really needs to trust his physical therapist. He needs to be comfortable enough to relax during sessions and to take the therapists directions. If not, pt can backfire.
Posted by long2bbetter (Member # 6792) on :
Thank you so much everyone for all your helpful suggestions and input.
I think you are right that there is no good result when you are dealing with a duck.
We thought after seeing so many other ducks and my husband finally being properly diagnosed with lyme disease by a great LLMD, we wouldn't find ourselves in the duck pond again because of physio.
Thanks again everyone!!!!!!!!!
Posted by valymemom (Member # 7076) on :
My son has had physical therapy and a entire summer of physiotherapy twice weekly (prescribed by his neurologist.) His problem is pain. I have to say the physiotherapy did not do anything for him. The physiotherapist, though, felt sure there was something happening in his body that was preventing success. Six months later we found out the "something" was lyme.
I, too, agree with lou about not going thru the mill with their testing and maybe instead of physiotherapy get a prescription for physical therapy like Dr. B. recommends.
Posted by JimBoB (Member # 8454) on :
If you HAVE to deal with a duck, just quack back at him/her.
I agree to bring them DUCK food, trouble is you will probably have to teach them HOW to digest it too.
THEN just duck out of there.
Jim Posted by long2bbetter (Member # 6792) on :
Thanks again, everybody for all your responses. We really appreciate your suggestions!!
I have a question about PT. Just wondering, what is the difference between physical therapy and physiotherapy? Maybe the physio at our local hospital is the wrong kind for lyme rehab? Posted by Aniek (Member # 5374) on :
I believe physiotherapy and physical therapy are the same thing.
I was very lucky with my therapist. I found him because he worked out of a clinic where my pain specialist was. He had not worked with Lyme patients before, and I didn't know I had Lyme when I started working with him.
He specializes in trigger point or myofascial release. He does a lot of hands on work to help the muscles relax, before moving onto strengthening exercises. He's more expensive than what my insurance covers, but for me it was worth it.
I use 2 tests with physical therapists. First, do they spend the whole time with one patient. I won't go to a therapist who shows me how to do an exercise and goes to another patient while I'm doing repetitions.
Second test is how they listen and adapt to me. Some pain is part of pt, but the therapist needs to listen to me when I say the pain is too much. The therapist also needs to change the approach if it's not working for me.
Posted by bettyg (Member # 6147) on :
L2B,
Here's Canada support group page for you; check with these lyme folks too for advise.
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