posted
After all the posts on my remission diagnosis, I am so totally depressed and stressed again. Last ngiht wehn Dr R told me remission but stay on abx for another 6 months I was so relieved and happy...even went to dinner for first time.
After reading all these bad things I am beyond devastated again. I am deciding on seeing either Dr K since he is a neuro lyme do and I have this severe nerve issue from my brain surgery or Dr H who everyone sasy is the new top LLMD in NY.
Both are very far for me right now but I guess I need to get another opinoin. Can someone help me decide who they feel is the best to handle my case and get a second opinion from?
I have no positive testing on any counts even co infections if that helps in deciding and I even question my lyme diagnosis at times.
Thanks
-------------------- 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
can someone help me with who is better at this time to schedule with. I need a second opinion on this remission or I wont rest. thanks
-------------------- 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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Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
If you really are in NY, then I'd go with Dr. H. Dr. K's waiting list is huge...
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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posted
I am in queens...Dr H is almost 2 hours from me..Dr K is over the CT line and about one hour from me.So you thing Dr H is better, I just want a second opinion adn to try and determine if I ever had lyme or not.
Getting the impression from my llmd that I do not and he is letting me off his hook gently.. thanx. I recently cancelled Dr K for May 1st...no money at the time
-------------------- 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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lululymemom
Frequent Contributor (1K+ posts)
Member # 26405
posted
In my personal opinion I would skip the LLMD neuro Dr K in Connecticut. He did clinically diagnose hubby with lyme back in 2003, but he missed his coinfections. And in my opinion from what current patients have said I do not think he would diagnose coinfections clinically. His big thing is IV IgG and unless you qualify for that treatment then you may not get much help.
Don't remember if you ever had a brain SPECT scan. If not then I think that could be helpful in regard to your ear issues. The best place for that is Columbia Presbyterian in New York.
There is another LLMD in New York that should be cheaper than Dr H and might have a shorter waiting list. I am referring to Dr B who also is into alternative medicine and might be of benefit in getting your neurotransmitters back in balance.
Hubby has only seen Dr K so the other info is only based on patient reports and not personal experience.
Also, based on hubby's experiences I would want a clean bloodslide done by Clongen or some other lab before I would be even halfway be convinced he did not have bartonella or BLO or mycoplasma or some other unknown bacteria or protozoa.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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thank you for the info on Dr K, I was about to make an appt but dont want to deal with that again.
I do not know dr B in NYC if you could pm me with the name and info that would be so great. Unless you are talking about the neuro at columbia that I just went to see last week? She no longer believes that lyme should be treated for more than six weeks.
I already have an mri showing lesions that is why I went to her and she diagnosed them as uncontrolled blood pressure where vessels died off. I only know DR H from what I hear on this site about him too?
-------------------- 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 know picking a new LLMD is a very hard and personal decision. Personally, Dr. H is amazing and my personal lifesaver. When I first saw him I was having 20-50 uncontrolled seizures a day. I am now happy to say I am down to one seizure every few months.
I have been to other top LLMD's and he is my favorite by far. I would consider him one of the best LLMD's in the world. Please send me a PM for more information. Wish you the best of luck.
Take care and God bless,
Lu
-------------------- "One day at a time"
Current: -1.2 IM bicillin three times a week -1.25 IV Vancomycin every day -IV glutathione and IM B12 -Byron White since Jan. 2011 -ALA, Yasko protocal, Adapten-All, thyrosol, Pekano, phosphalipid exchange, probiotics, oregano... Posts: 390 | From FLORIDA | Registered: Jun 2007
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posted
NYB...do you see Dr K? how long has it taken for you to feel better?
Karen...I took all the tests already from igenex. First one was negative..second after twom months on abx had some IND and positives but still CDC negative. Neg to coinfections and CD 57 normal. Yet I am still so dizzy and shaking? Dr R says I am in remission after 5 months on omnicef. I am very confused
-------------------- 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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