Need Lyme Literate Doctor in Long Island

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Elaina
Regular Member


Date Joined Feb 2007
Total Posts : 254
   Posted 1/22/2011 9:10 AM (GMT -6)   
I have not posted in a long time, however I remember how helpful the members were to each other. I am hoping that you can help me once more.   This request is on behalf of a friend's sister in law who has Lyme.  She lives in East Setauket, Long Island.  (I am in Ct.)  I know that it is in Suffolk County on the North Shore of Long Island.  She is very sick, has gotten a Lyme diagnosis and is on ABX, but knows that she needs a Lyme literate.  I know of one Dr. in NYC but am not sure how far that would be for her (didn't think of asking at the time).  I have also sent a request out to the LDA (unsuccessfully I am afraid as I had trouble getting it to submit, hoped for the best, but have not heard anything back yet)  Anyone out there who might be able to help me locate a Dr. for her - it would be much appreciated.  Thanks.

bucci
Veteran Member


Date Joined May 2006
Total Posts : 1477
   Posted 1/22/2011 9:43 PM (GMT -6)   
Good Luck and i would love to know a real lyme doctor on Long island.

It is the biggest cover up zone int the country. i don't even trust that Stony Brook Lab.

Have you asked them for a LLMD? Your friend just may have to go into the city.
after over 20 yrs of doctors . DEC. 2009 tested positive for lyme, bartonella, ehrichiosis, HHPV6, chlamadyal pneumonia .
parasites :strongylides, diaoebia fragialis, hook worm.

Hep C ....fibro, rhumatoidal,depression,

Elaina
Regular Member


Date Joined Feb 2007
Total Posts : 254
   Posted 1/22/2011 10:37 PM (GMT -6)   
Bucci,
 
I am not quite sure why you responded.
 
I was looking for help for a friend and  your response didn't offer any assistance what so ever.  Not quite what I expected from this site.
 

Deejavu
Veteran Member


Date Joined Aug 2005
Total Posts : 4187
   Posted 1/23/2011 8:58 AM (GMT -6)   
Hi Elaina,
 
After I had dark field microscopy done, I was referred to an infectious disease doctor in Plainview, Long Island (borderline of Nassau and Suffolk County) who was lyme literate (he was the one who told me about IgeneX and sent my blood there instead of local labs), he also was knowledgeable about different antibiotics if that is the route your friend wants to continue.
 
If you want the name of this doctor in Plainview, please click on the envelope and e-mail me.
 
I became better using alternative medicine after trying abx for a substantial amount of time.
 
You are a good friend to help!
Denise
It's all about the Immune System mixed with Daily Detoxing and a dose of Positive Thinking!

bucci
Veteran Member


Date Joined May 2006
Total Posts : 1477
   Posted 1/23/2011 10:54 AM (GMT -6)   
Elaina,
I'm sorry you took that so personally.

What I was trying to say was I am having same problem as you finding an LLMD on Long Island for 20 yrs for my family.

I have been to all kinds of rhumatologusts and neurologists.

It's like no one wants to talk about it.

I believe Long Island is one of the first and most infected areas for Lyme.

While Conneticuit has gotten all the press and even passed laws to protect their doctors, Long Islander's still don't think there is a true test for it.

NY state along with one other state are only ones that don't recognize Igenex.

Burrascano was originally from the Hamptons and when he started opening his mouth about the magnitude of his findings they gave him a really ruff time.
This is why he is not there anymore and has dedicated his life to finding how to treat Lyme.

I was really expressing myself having same problem as your friend in Setauket...

And that there is LLMD in The city and Westchester. If you email me I will send you who I was recommended.


Sorry for adding to your frustration, Elaina.
I see that 255 people have looked into this post since yesterday. this is how hard it is to find a doctor on Long Island.

Post Edited (bucci) : 1/23/2011 1:37:37 PM (GMT-7)


Elaina
Regular Member


Date Joined Feb 2007
Total Posts : 254
   Posted 1/23/2011 5:30 PM (GMT -6)   
Thank you Denise.  I just emailed you.
 
Elaina

Dan's Mother
Regular Member


Date Joined Feb 2007
Total Posts : 189
   Posted 1/23/2011 7:03 PM (GMT -6)   
Hi Elaina,
 
I'm so sorry that your friend is dealing with Lyme Disease.  I, too, am on Long Island and I work with Empire State Lyme Disease Assn.  I have a list of doctors who are Lyme Literate and some who are Lyme Friendly and are willing to work with LLMDs.
 
Please Email me at phassan@optonline.net and I will be glad to give you the name of someone who is here on LI and can help your friend.  She is lucky to have a friend like you who is willing to advocate for her.
 
Wishing you all the best,
Take Care,
Karen
 
 

Elaina
Regular Member


Date Joined Feb 2007
Total Posts : 254
   Posted 1/23/2011 7:31 PM (GMT -6)   
Karen,
 
I just emailed you.
 
Elaina

CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 1/23/2011 9:29 PM (GMT -6)   
Thank you Karen for helping:)
Co-Moderator- Lyme Disease Forum

Lyme Disease, Fibromyalgia, Hashimoto's Thyroiditis, Adrenal Fatigue, Rheumatoid Arthritis
Prescription Meds:Sulfasalazine(RA), Medrol pack(Steroids), Cymbalta(Fibro), Tramadol, Axid
Supplements: CMK, Folic Acid, Fish Oil, Probiotics, Vitamin D, Multi Vitamin

Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 25954
   Posted 1/24/2011 3:37 PM (GMT -6)   
Yes, Thank you very much for your help, Karen!!!
Co-Moderator, Lyme Disease ;)

"Absence of proof is not proof of absence" - Dr. Edwin Masters, great LLMD & researcher -RIP

I break up my post because my eyes have been effected by TBI's as well, which makes long paragraphs very hard to read.

walkingafineline
Regular Member


Date Joined Jun 2011
Total Posts : 62
   Posted 6/5/2011 2:17 PM (GMT -6)   
Denise, I just saw your posting and wanted to email you for the docs name, but can't get it working. It just asks me to log into google and goes no where. I'm just no good at figuring things out anymore.

I live in Clearwater, Fl and the doc down here who is supposed to be Lyme literate wants $500 just to talk to him and I have been told it will be $2,000 a week for treatments IF I am accepted. That's the most insane thing I have ever heard.

My in-laws live in Plainview, Long Island and I would be willing to go stay with them to see a truly LL doc who isn't trying to rake me over the coals. I would really like the docs information if you would still recommend him. My MD here is a great guy and would be more than happy to treat me for as long as it took, but he's inexperienced and thinks I should see someone who is literate while he is learning.

I was infected 10 years ago in Washington State and presented with every sign and symptom, but my doctor at the time did not know anything about Lyme and totally missed diagnosing it. I had the rash, the meningitis-like symptoms, everything. Gradually I began losing feeling in my feet, then I would wake up with my arms numb and about every 6 months I would come down with meningitis symptoms. Kept getting diagnosed with viral meningitis. Then 5 years ago I was bit again and presented again with the same rash and symptoms, and again the doctor missed it. Both times he said I was bit by a poisonous spider. In the last few years he has learned about Lyme and last time I went to Seattle he wanted to see me. He knew I was infected and that he had missed it. He got me tested and diagnosed. He would handle treatment but he's in Seattle and I can't handle flying anymore. I can't really blame him since he was told that there wasn't any Lyme in Washington state and never really educated on it.

I started showing lesions in the brain 4 1/2 years ago and now my cognitive is shot, I don't remember things well at all and I have started with Parkenson-like tremors when I get any stress and have developed RA in my joints. Doctors are talking about MS and Parkensons now. It is absolutely maddening. I have wanted my own restaurant my whole life and finally had the opportunity to open it and did so 6 months ago. The stress of it all came down on me like a 10 ton boulder and now I have to give it up. I just can't handle it. The physical and mental strain magnified every symptom about 100x. I have had to hire other chefs to take over for me in the kitchen. My Executive Chef title has become nearly meaningless. And I can't handle the finances, administrative duties, nothing. I have to give it up to my partners and walk away from my dream.

It has taken me 30 minutes to write this because I have to keep going over it to make sure it doesn't sound like mad babble. Please, if you can give me the information on the doctor in Plainview I would greatly appreciate it.

dagna
New Member


Date Joined Jul 2013
Total Posts : 1
   Posted 7/27/2013 7:12 PM (GMT -6)   
Elaina,

Was your friend’s sister able to find a doctor who helped? My father has lyme disease, based on some test he's had it for a long time, so we are looking for a doctor for him in LI. He also lives in East Setauket. His current physician hasn't been helpful and we are concerned she's not Lyme literate. He found a few doctors, but none of them take insurance. Would you mind passing along the name of the doctor your friend’s sister ended up seeing?

Thank you so much!

Dagna

Ceriamda
New Member


Date Joined Aug 2013
Total Posts : 2
   Posted 8/5/2013 7:06 PM (GMT -6)   
The doc in Plainview that some people have mentioned knows his stuff. He treated me in 2004 and I kept him as my primary physician after. Unfortunately I just started treatment again last week. This doctor is a lyme specialist and infectious disease specialist. He was worth the wait when I was diagnosed by a brain MRI in 04. He does use a special lab but will also tell you that blood work is not the answer. Just because someone tests negative does not mean they don't have Lyme. I had the bite, lyme rash, etc., and it was misdiagnosed. Nine months later severe headache for 21 days and a positive MRI. My lyme titres and all other bloods showed negative. You really need to see someone who knows the latest on the disease and how to treat it. This doctor is on the National Lyme Board as well. Anyone who wants his information please email me and I will be happy to forward you his contact info.

aphysicalwreck
Regular Member


Date Joined Sep 2012
Total Posts : 384
   Posted 8/5/2013 7:34 PM (GMT -6)   
Ceriamda:
I went to an ID in Plainview also. I wonder if it is the same dr. He did not think I had lyme even with all my symptoms. He did not send my blood work to Igenix. He used another facility and, of course, that was negative. I had my blood sent to Igenix through another dr and I had four IND bands and two positive bands. I would be interested to know if we are talking about the same ID dr because there are not that many around in that area. I tried e-mailing you but your e-mail was unavailable. Would you mind e-mailing me with the drs name? Thank you.

jfo
New Member


Date Joined Oct 2013
Total Posts : 1
   Posted 10/10/2013 9:08 AM (GMT -6)   
I am also interested in getting the Plainview doctor's information. Please email me. Thank you!

Blackpearl8
New Member


Date Joined Oct 2013
Total Posts : 7
   Posted 11/1/2013 9:58 AM (GMT -6)   
Can you providemmemwith the LLMD in Plainview?
Thanks!

gmhimmel
New Member


Date Joined Mar 2014
Total Posts : 1
   Posted 3/13/2014 5:13 PM (GMT -6)   
Did anyone get the doctors name in Plainview? I'm looking for a doctor who knows about Lyme on LI. I'm hoping to find someone who takes insurance too.

ToddPaul
Veteran Member


Date Joined Nov 2012
Total Posts : 853
   Posted 3/13/2014 5:40 PM (GMT -6)   
I can give you his name but I don't recommend him. He doesn't know how to treat these infections and uses MD Labs which is not as good as IGeneX at least with the Western Blot. I've used both.

I have an LLMD in Bridgeport (hopefully you live in Nassau) that's much better and tests through IGeneX. He doesn't accept insurance but you wouldn't have to mortgage your house to go to him ($300 initial visit, $250 thereafter).

Feel free to email me for the info.

ROBLI
New Member


Date Joined Jan 2016
Total Posts : 2
   Posted 1/18/2016 7:42 PM (GMT -6)   
Hello,

I am also a long term lyme sufferer. Long story short, After many years of of being told theres nothing wrong with me (from age 20-25). I ended up in stony brook hospital, they could find nothing wrong in my blood but my symptoms had the dr order a spinal tap witch came back positive with lyme bacteria. They gave me a 30 day supply of doxy (oral) and sent me home after 2 days. Needless to say the last 8 years have been hell. IF theres anyone on here who could help me with a LLMD on Long Island it would be greatly appreciated if you could send me a email with the name and address. Thank you.

sayyadina
Veteran Member


Date Joined May 2009
Total Posts : 1343
   Posted 1/18/2016 8:16 PM (GMT -6)   
Hi Robli.

I think you'll get more responses if you start your own thread.

I don't know of any LLMDs on Long Island, but I do know of one in Wilton, CT. I only saw him once many years ago and opted not to work with him, since he wanted to do antibiotics and I don't do well with them. You'll need to activate your email in your profile so people can send you LLMD info.

You also might have some luck if you google a LLMD based on info here. Example "Dr P Wilton CT Lyme".

Hope this helps.
J. knotweed, motherwort, cat's claw, sida, alchornea, cryptolepis, hawthorne, cilantro, anise, nettle, C. senega, C. skullcap, houttuynia, kudzu, stephania, red root, vitamin C, E & D, calcium, Biosil, milk thistle, l-arginine, reduced glutathione, grape seed, curcumin, glucosamine MSM, magnesium citrate, salmon oil, green tea extract, hydroxyB12, methylfolate, B vitamins, CoQ10, selenium, zinc

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 11312
   Posted 1/18/2016 9:05 PM (GMT -6)   
Welcome to our community, Robli. I agree with Sayya - maybe start a new thread titled: " Looking for LLMD in/near Long Island"

Also, if you enable your email option, then members can send you names of LLMD's privately. We don't post them on here - as we want to protect our LLMD's from being persecuted for treating lyme.

While you're waiting for names, you might want to read through the "New to Lyme?..Start here!" thread at the top of the page. Lots of great information - symptom lists, info on probiotics, detoxing suggestions, and more!

Good luck!
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14; added biaxin Sept. 26/14 Disc. amox,added Ceftin Nov. 20th.; Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin); Abx/herb break Apr-July/15; July-mino; Aug. added Rif; Nov. switched mino to biaxin.

4Mom
New Member


Date Joined Jan 2016
Total Posts : 1
   Posted 1/21/2016 3:55 PM (GMT -6)   
Joind bc my Mother who is 73 was dx about 6 months ago. Folled by a md in Mt Kisco, but would love for her to b followed on LI since we live here. Not understanding why people are not mentioning their Dr's name. Would love for her to be followed by the MD in Plainview

Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 25954
   Posted 1/21/2016 4:04 PM (GMT -6)   
Hi 4Mom!
Welcome to our community!! I'm so glad you found us.

We don't mention Dr's names because they are literally being persecuted for stepping up and treating us with something other than IDSA's (infectious Disease Society of America) treatment standards. True LLMD's are trained by ILADS (International Lyme and Associated Diseases Society) and they believe in a completely different set of treatment standards. Many have lost their license, have had to move themselves, their families and their practices to another state or have had to have monitors to 'approve' of every prescription and every chart entry, which is very expensive!! But that's the point, they are being punished for not following the IDSA's standards.

ILADS vs IDSA:
www.clinicaladvisor.com/controversy-continues-to-fuel-the-lyme-war/article/117160/

archinte.jamanetwork.com/article.aspx?articleid=226373

www.ncbi.nlm.nih.gov/pmc/articles/PMC2901226/

Since you are here posting for your Mom, if you haven't ​yet​, it would be helpful for you to start with reading through the thread at the top of the forum titled,"New to Lyme?...Start here!!", as it is packed full of important information that you could share with her; symptom lists, helpful links and pdf's, how to detox when one has these infections, information on probiotics and much more. And this is another good list of possible detoxing routines: www.tiredoflyme.com/detox-methods.html


For information on finding a​n ILADS ​(International Lyme and Associated Diseases Society)​ trained​ Lyme Literate Medical Doctor(LLMD) in your area, you will need to enable your email option in your profile in order to receive any recommendations, as we don't allow doctor's names and contact info to be posted on the forum for several reasons. You can enable your email option in your profile, under 'edit profile'. Be sure to click the submit button to actually save your preference.


​You can send me an email by clicking on my screen name or the small blue envelope under my screen name. I may have contact information for some LLMD's in your area as well.​ ​Please include your state (or province) and area that you would like to find a LLMD in and I will be happy to share the names I have.​


You can email the Tick-Borne Disease Alliance at medicalinfo@tbdalliance.org​ for LLMD referrals and you can go to ​tbdalliance.org​​ to learn more about these infections.


You can go to The Lyme Disease Association and search for LLMD's 3 times in a month. You have to register first. Here is the link:
www.lymediseaseassociation.org/index.php?option=com_content&view=article&id=277&Itemid=74​​


ILADS has their own referral system as well:
ilads.org/ilads_media/physician-referral/


​ You will want to find an ILADS trained doctor, not one that has self proclaimed themselves as a LLMD or an ID Doc (Infectious Disease Doctor), as ID docs believe Lyme is hard to catch and easy to treat, and don't believe in the reality of chronic Lyme. Go to the ILADS site to read the new (2014) Treatment guidelines to get you started on your healing journey:
www.ilads.org/lyme/treatment-guideline.php
Herb only treatment for Lyme & Bart ended 12/11 - no active symptoms for 2 yrs -Herb only treatment for Babesia ended 12/12
www.healingwell.com/community/default.aspx?f=30&m=2977364
Had Lyme, Bart, Babs, RMSF, Ehrlichia, Myco, Anaplasmosis, EBV
New Lyme case 8/2014 - Healed 1/31/15
*I can usually post a link to any info that I post. Wish to see a link? Please just ask!
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