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» LymeNet Flash » Questions and Discussion » Seeking a Doctor » Seeking LLMD in NY State

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Author Topic: Seeking LLMD in NY State
Chiantinan
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Member # 43466

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Hi There! I'm hoping you can help me locate a MD to partner with my 80 yr old mom who was first diagnosed with Lyme in 2009.

She was diagnosed late not early.

She did the standard 6 weeks on doxycycline with not much of an improvement.

For the past 3 yrs she has been experiencing extreme shakiness but not like Parkinson's. You can't see it but she feels it.

Substantial short term memory loss.

Severe knee joint tightness, is the way she explains it.

Severe back pain to the point where she can't stand and has to sit down or she would fall down.

Shortness of breath/ shallow breathing.

Thank you in advance for any assistance you can provide!

[ 03-23-2014, 12:12 AM: Message edited by: Robin123 ]

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hopingandpraying
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I'm a bit confused as to where you are looking for a LLMD. Where is NYS? Do you mean NYC (New York City)?
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TF
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I assume it means New York state.
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Chiantinan
Junior Member
Member # 43466

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Sorry for the confusion. I'm looking in New York State. Thanks!
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hopingandpraying
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Welcome to Lymenet! Thanks for the clarification.

Check the online state Lyme groups at:
http://health.groups.yahoo.com/group/newyorklyme

Maybe they can help you.

Some more resources for you:
www.lyme-aware.org/new-york.html
www.empirestatelymediseaseassociation.org

Read the new book written by Dr. H, the top Lyme-literate doctor, entitled, "Why Can't I Get Better?". It is an excellent source of information.

Also "Cure Unknown" by Pamela Weintraub. Check your local library or buy it used on Amazon.

View "Under Our Skin" for free on www.hulu.com

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TF
Frequent Contributor (5K+ posts)
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Also check "Support Groups" on the left side of this page. Contact all that are anywhere near you.

At age 80 I assume your mom has Medicare. Few lyme doctors accept Medicare. So, be prepared to pay out of pocket. Also, if the lyme doctor has not opted out of Medicare, he is not allowed to accept your mom as a patient.

The best lyme doctor in the country is in NY state. But, unfortunately, he is not taking new patients right now. It could be months before he reopens and will start taking new patients.

You can check his website and call his office to find out how to get on his mailing list to be notified when he reopens.

http://www.cangetbetter.com/medical-center

I know of a number of other lyme doctors, mostly in New York City. But, I do NOT recommend that she go to any of them. I have so many bad reports about them.

I truly hope that the lyme support groups can give you the name of some doctor that will help your mom until you can get her in with a top notch lyme doctor.

We nearly always have to start with a doc lower on the totem pole, so to speak, and wait, wait, wait to get in with the best doctors.

Your mom needs a real lyme disease specialist in order to recover. So, good for you for inquiring here. Doctors who are not expert in this disease (meaning 99.9% of the medical profession) do NOT know how to treat a lyme patient. They strongly believe that lyme is RARE and EASILY cured. They will say that your mom has been cured and there is either something else wrong with her or it is all in her head. We have all been told this until we finally crossed over to seeing only exclusively lyme specialists.

A Boston TV station did a show on the lyme disease controversy a few years ago. Here is the Boston Chronicle video on YouTube:

http://www.youtube.com/watch?v=s3_JwDPqGAg

I suggest you watch this video a few times. It explains the lyme disease controversy and the role the IDSA plays in making it difficult for a person to get good lyme treatment.

Also, to get your education on this horrendous disease, you should read and study the Burrascano Lyme Treatment Guidelines found here:

http://www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf

I wish you the best. We will help you here all we can.

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Chiantinan
Junior Member
Member # 43466

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Thank you for your tips and words of wisdom. I will read up on everything you recommend. I have read about the horrors you all have had to deal with and this insidious disease. It just breaks my heart to think people have to work so hard to get good treatment! I'll let you know how we make out.

Thanks again!

Posts: 6 | From Ca | Registered: Mar 2014  |  IP: Logged | Report this post to a Moderator
   

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