anyone know of a good neurologist or hospital in the nyc area who has helped in any capacity?
we are in admissions process for a center, but if they don't take his case, we need a back-up. the options given so far are inadequate. i can't find any suitable back-up plan myself after 84,000 hours of research. sometimes a doctor in the feild can set you in the right direction for immediate care. doesn't have to be LL, just a good doctor.
please pm me.
mo
Posts: 8337 | From the other shore | Registered: Jul 2002
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bettyg
Unregistered
posted
mo,
i couldn't find anyone in nyc but i have sent you 2 others for
posted
thank you ipkayak for another top notch reference.
our problem is outside the relm of all the top notch experts we use or have conferenced with that deal with teens suffering with brain disorder symptoms related to tbd's.
there is just no place set up to appropriately service (much less treat) adolescents with this particular condition. there seem to be great resources for kids, and great ones for adults, but not teens. teens have different needs and different brains!
we are trying to make contacts and inroads with experts outside the lyme field right now, going with the evidence of brain injury to try and gain care in that area. even tho it would not be "lyme literate" inpatient care (which doesn't exist).
at least it wouldn't be psychiatric inpatient care, which is completely inappropriate and traumatic to those with an organic brain disorder.
different problem, different presentation, different rehabilitative needs, and psych meds can be very dangerous when brain function is severely compromised.
my son has had life-threatening adverse reactions to several meds that effect the brain.
we may not be able to secure this, i know, but i'm trying my *** off, because i have to. we have one potential place which he has been clinically accepted to, where we have some beurocratic obstacles not related to lyme that haven't yet resolved.
we're running out of time and i've called over 100 professionals in all areas related to this, no joke. i'll keep trying till we can't try anymore, but at this point, prayers would help.
mo
[ 06. September 2008, 07:47 PM: Message edited by: Mo ]
-------------------- life shrinks and expands in proportion to one's courage -- anais nin Posts: 8337 | From the other shore | Registered: Jul 2002
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-------------------- worrying about tomorrow takes its strength away from today Posts: 970 | From Point PLeasant , NJ | Registered: Jan 2008
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I 100% agree with your comments regarding psychotropic meds and lyme patients. Hubby had 3 psych admits early in the course of his illness. The psych meds just caused additional side effects and did nothing for the undiagnosed tickborne illnesses (at the time).
What helped hubby most with his anxiety was SAM-e. Do think high dose CoQ10 (300 - 500 mg of ubiquinol form) has been very beneficial as well.
Initially 5-HTP backfired -- but in combo with Resveratrol to block the conversion to quinolinic acid very helpful for sleep. But what has helped the most with sleep issues is treating Babesia.
I am trying to remember the name of the doc in either Boston or Baltimore that a neuro in Florida wanted to send hubby to. The doc has an inpatient clinic and treats primarily cancer patients. Very expensive. He is Oriental and combines Eastern and Western meds and maybe also Ayurvedic treatments as well. Might be a long shot -- will p.m. you if I can locate any info.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
yes, imo they could be a good resource for many.
i suggest more people look into that.
i've picked them clean on our situation, tho, but am still going back to them when i have a new problem to figure out. i'm also going to try the society's in other states.
thank you so much for your help.
mo
-------------------- life shrinks and expands in proportion to one's courage -- anais nin Posts: 8337 | From the other shore | Registered: Jul 2002
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