I have MS/Neuro-lyme. Do I need a Dr. who knows neuro-lyme?
My llmd knows lyme, and abx. He follows Dr. D's protocol and says he will not give up with me- some days I am ready to do so...
He really knows nothing about the MS/neuro symptoms. He has taken me off all supplments and is waiting to start abx. until my body has cleared the supplemts.
He also knows yeast. I can still take acidophilus.
abx. and yeast- does he need to know anything else??
Posted by Jellybelly (Member # 7142) on :
My mom has MS/Nuero-lyme and my LLMD did just the opposite of what yours did. He put her on numerous supplements, for several weeks before starting ABX.
He wanted to give her body a running start. She still had a tough herx reaction, but was impressed for sure. She stopped the Avonex she had been on for probably 7 years. The most amazing thing was that she got quite a bit of feeling in her feet.
She only did about 4 months of ABX, because she coouldn't stand the herxing. So far she is holding the improvement she made. She actually believes she may be able to travel once again.
She still takes the supplements.
Posted by stymielymie (Member # 10044) on :
your best bet for a very good neurologist will probably be found in Boston. the best bet is to find the head of neurology at a large medical school/hospital. yale or Harvaaad may be a good place to look.
i found an excellent neurologist at Jefferson Hospital in Philly. Head of Neurology. loked at me and said i had lyme and why hadn't i been treated yet.
sent me right to infectious disease and got rochephin immediately.
this was after 10 docs and six months. this was also with elisa of 5.8 and western blot with all but 1 positive.
go figure, but persiverence is the key. also gets expensive even with insurance.
now after 6 years i'm no better, sorry to say but did have 2 years of remission.
now my copays alone for drugs and docs and therapists and physical therapist is ran $500 last month with insurance.
expensive disease.
docdave Posted by alliebridge (Member # 9103) on :
quote:Originally posted by stymielymie: your best bet for a very good neurologist will probably be found in Boston. the best bet is to find the head of neurology at a large medical school/hospital. yale or Harvaaad may be a good place to look.
No, no, no! The neurologists in Boston know NOTHING about Lyme, from my experience. It would be a COMPLETE waste of time to see any of them. You're much better off with a LLMD who treats neuro-lyme.
Posted by VLSer (Member # 8189) on :
Agreed that I should stay away from both neuros and infectious disease- been there, done that...
what I'm really wondering is if I need a neuro-lyme doc, or will a regular-ole LLMD do?
What would a neuro-lyme LLMD do that a LLMD doesn't?
thanks! VLSer
Posted by sadie420 (Member # 9294) on :
I think that probably everyone here has neuro-lyme. It goes with the territory and is just one of the many manifestations of the disease.
I think he uses ivig? Check it out in the above newsweek article.
Posted by dmc (Member # 5102) on :
I'm a MS caused by lyme person as is my younger sister...she's a newbie, just this year. Great we knew not to let her get talked into going to neuro. Our llmd is Dr. P. who does and now has a dvd out on his medical presentation tying LYME to MS.
He has gathered all they years of research and put it together. The DVD is of his presentation on lyme done at the University of New Haven.
I will PM you.
Posted by lymie tony z (Member # 5130) on :
VLSer...
If you have a LLMD...he/she should be aware of the manifestations of MS/nero in lyme.
I would suggest that whoever you are going to is not an LLMD in the truest sense of the word....
Find another llmd..............zman Posted by VLSer (Member # 8189) on :
Good point.
looking for a new llmd, VLSer
Posted by tickedntx (Member # 5660) on :
Dr. D is a very well respected doctor who is a Lyme epxert and has helped many patients. You should be aware, however, that I know of no other LLMDs who agree with his approach.
He asks his patients to stop all supplements -- though I've heard that there are a few he will allow at the patient's request -- and does not treat co-infections, except, it seems, in very rare instances.
I am not going to say his approach is wrong -- he has helped my mother though I'm not convinced she is fully recovered even though he has stopped treatment -- but you should be aware that it is controversial within the LLMD/ILADS community.
Many of his patients, upon not improving after significant amounts of time, have moved on to other doctors and done much better. My guess, and it is only a guess, is that these patients may not report that they have moved on to other doctors and improved, so he may believe that he no longer sees them because they have recovered.
It may not hurt to get a second opinion from another doctor and see which makes the most sense to you.
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