posted
I'm sapphire's daughter, she's in the hospital unable to ask this question herself. She is having extreme episodes that cause her to lose her ability to speak. Her body also becomes very ridid and she is unable to move at all. She is needing to find a lyme literate neurologist. Does anyone know where we can find one?
Posts: 495 | From KY USA | Registered: Dec 2004
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Bugg
Frequent Contributor (1K+ posts)
Member # 8095
posted
yes, Columbia University Medical Center....contact their neurology department and ask for a consult with a neurologist who specializes in lyme disease....
posted
Sorry to hear your mother isn't feeling well. Does she have a physician who is Lyme Literate? If so, you should get the number and call her physician immediately.
Best wishes
Posts: 172 | From ohio | Registered: Feb 2010
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posted
Thanks for the response Bugg. We called the Columbia University Med Center and spoke with a doctor there. They don't treat patients there, but the doctor was very helpful and gave us a number of a doctor to contact. She has an appointment in New York with Dr.C.B. I edited to remove doctors name.
[ 04-27-2010, 09:32 PM: Message edited by: sapphire101 ]
Posts: 495 | From KY USA | Registered: Dec 2004
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It is hard to say for sure which infection is causing the problem -- he has lyme, bartonella and babesia -- but I can say for sure that it is a result of brain inflammation.
Here are some possible meds to use to try to control the muscle rigidity -- IV Ativan, or benadryl, or IV phenergan, or IV Demerol. Hubby has used these meds in different combos over the last 3 years or so either at home or in the ER or hospital when he has had bad symptom crashes.
I have talked to Dr C.B.'s office -- the lady neuro at Columbia. Probably is a reasonable choice. But there is one other neuro that actually treats with IV meds that would probably be a better choice.(Dr W in Connecticut) Will send you a p.m.
Your mother needs to reduce brain inflammation -- usually requires IV meds to cross the blood brain barrier. But if bartonella is the primary infection then oral levaquin may be a miracle drug in this situation.
The 2nd issue would be to use high dose antioxidants to help clear up toxins and also reduce free radicals -- pycnogenol (pine bark extract), COQ10 (300 or 400 mg of the ubiquinol form), and turmeric or curcumin and fish oil or flaxseed oil are all very good.
The third issue is hypercoagulation -- need to take something like lumbrokinase so the meds can get into the brain better.
One neuro told hubby that the freezing up spells were not caused by any one part of the brain -- meaning that it was not the result of a tumor or even a seizure.
Bugg
Frequent Contributor (1K+ posts)
Member # 8095
posted
To answer your question, I have not personally seen anyone at Columbia nor have I seen Dr. C. B. I have just heard that she is very knowledgeable and compassionate.
I'm so sorry your mom is suffering.
With all of this, please remember that each person is unique. I was told so many times with this disease that I would be in a wheelchair or that my brain would just "be slow" from now on....Neither happened.....Everyone is individual in how they respond to this disease....
I'm with Bea, I think IV abx are the way to go for neuro symptoms.....
Hug to you...
Posts: 1155 | From Southeast | Registered: Oct 2005
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