posted
I just got a may 9 appt with a lyme neuro doc in CT...Dr K? I am considering canceling after reading the email they sent to me about brining all mris and testing done on a CD for them? Has anyone else had this request from a lyme doc?
Also they state numerous time that they do not take calls or questions via phone or email from patients. YOu have to fax them your questions and they will take a few days to get back to you????
Does anyone know if this neuro doc knows more about brain lesions than an regular LLMD. If so, I will just stay with Dr R here in NY since he at least has his staff respond to you if you are ill in between treatment?
I am feeling horrible and May 9 seems so far away to wait and shell out another 1000 for the same type of visit. confused??? Help?
-------------------- Diagnosed with chronic neuro lyme 12/10 after 30 years of vertigo.2 tick bites in 3 yrs from upstate NY. Was on omincef for nine mths..zith and rifampin stopped.Remission~ All the pain and symptoms are back and I am not treating now with biaxin. Posts: 788 | From New york..queens | Registered: Nov 2010
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METALLlC BLUE
Frequent Contributor (1K+ posts)
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posted
quote:Originally posted by annier1071: I just got a may 9 appt with a lyme neuro doc in CT...Dr K? I am considering canceling after reading the email they sent to me about brining all mris and testing done on a CD for them?
Go to your local hospital or whereever you've gone in the past for MRI scans, or SPECT scans or anything else done, and tell them your doctor requests a CD. It's totally common place now to do this with X-rays and a variety of scans. Resolution on a PC screen in high definition makes it just as useful as though they were seeing the real scan.
quote: Has anyone else had this request from a lyme doc?
Yes
quote:] Also they state numerous time that they do not take calls or questions via phone or email from patients. YOu have to fax them your questions and they will take a few days to get back to you?
That's normal too for a very busy practice. Even though they say that, you can still talk to the doctor in person if you did see them and say "What do I do in an emergency or if I can't reach a fax machine, etc?"
By the way, Fax machines are cheap now and can be used at home pretty easily. Just look on Amazon. Anywhere from 25 dollars and up.
quote: Does anyone know if this neuro doc knows more about brain lesions than an regular LLMD. If so, I will just stay with Dr R here in NY since he at least has his staff respond to you if you are ill in between treatment?
I am feeling horrible and May 9 seems so far away to wait and shell out another 1000 for the same type of visit. confused??? Help? [/QB]
I'd be confused too. Most Brain Lesions disappear with long term therapy. I listened to Dr. P from Connecticut lecture when he came to Springfield MA. He spoke at length and used graphs and real case reports. Apparently the lesions heal quite normally. IV therapy and oral therapy can produce the same outcome he said but if the case is severe he'll refer the patient out for IV therapy.
Being a Neurologist doesn't help him really understand how Lyme causes lesions any better than another Lyme specialist who also sees plenty of patients with lesions, but if your main problem is lesions and CNS symptoms and it's not improving with any type of therapies that your other LLMD has tried for a good 15-24 months, then yeah I'd probably give it a shot, otherwise I'd wait and see.
Take the info I gave you and then do even more research on him. I gave you stuff to start with. Research the internet to see how you feel about him. Remember, reviews don't always reflect reality for an individual patient. It just increases the probability that you will or won't like a doctor if the reviews are glowing or dismal.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
posted
Thank so much I am on see DR R for 4 months on oral therapy...no IV..insu wont cover due to neg igenex.
I am, and always will question my lyme diagnosis since I have so many other issues with a radical ear surgery and now all the discs in my back are damaged..seeing an ortho today.
It is almost seeming that this could be the cause of my vertigo issues. I have herniated neck discs too. I have a hard time believing in long term abx treatment. I was never this sick until I got on them for 4 months. I did not have this severe pain and now muscle pain and weakeness until now. I am getting other and much worse symptoms (cannot be herx for so long--even LLMD agrees). I feel it may be damage from the abx so long. My ears now never stops ringing at all!! I think I will save his fee of 1000 and wait it out till I get more treatment and info.
I would really love to work with a lyme nutritionist if there is such a person and do it thte healthy way to get my body back if you know of any in NY or queens...
thanx so much
-------------------- Diagnosed with chronic neuro lyme 12/10 after 30 years of vertigo.2 tick bites in 3 yrs from upstate NY. Was on omincef for nine mths..zith and rifampin stopped.Remission~ All the pain and symptoms are back and I am not treating now with biaxin. Posts: 788 | From New york..queens | Registered: Nov 2010
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posted
I would see a LL neuro if your symptoms are largely CNS-involved. Would love to have one near me that I could see!
LLMD's don't typically deal with the neuro issues as much, so an LL neuro could be a big help.
I always bring all reports and MRI's to a new doc, that way they can get up to speed on where I'm at instead of starting from scratch. Usually you can get the MRI CD's on your way out of the MRI lab. Bring all other pertinent lab reports as well. It's a good idea to start keeping copies of ALL of your records (MRI's, lab reports, other tests) in case you ever need them.
Posts: 40 | From USA | Registered: Jan 2010
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posted
Dr. K is the best of the best. He knows EVERYTHING. He has one Patient's Choice awards many, many years. Also, was recently awarded an award for being one of the top doctors in the metropolitan area.
Posts: 306 | From NY | Registered: Sep 2010
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