please help us find a lyme doctor in NYC

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sickoflyme54
New Member


Date Joined Oct 2008
Total Posts : 1
   Posted 10/13/2008 9:19 PM (GMT -6)   
My husband has had chronic lyme for 3 years and has been given varying doses of doxy. The other day he fell and was unable to get up by himself. After x-rays, doctor visits, no help. I suggested he go back on doxy and within 12 hours his pain went away. Need to find someone in the nyc area that knows how to deal with Lyme. So far our GP knows very little. Thanks

ticker
Veteran Member


Date Joined Feb 2003
Total Posts : 9208
   Posted 10/13/2008 10:29 PM (GMT -6)   

Hi sickofLyme54, welcome to the board!

Has your husband ever been treated continuously?  What dose of Doxy is he taking?

Below is a Lyme symptom list.  You can have any combination of symptoms. 

Unexplained fevers, sweats, chills, or flushing
Unexplained weight change--loss or gain
Fatigue, tiredness, poor stamina
Unexplained hair loss
Swollen glands
Sore throat
Testicular pain/pelvic pain
Unexplained menstrual irregularity
Unexplained milk production: breast pain
Irritable bladder or bladder dysfunction
Sexual dysfunction or loss of libido
Upset stomach
Change in bowel function-constipation, diarrhea
Chest pain or rib soreness
Shortness of breath, cough
Heart palpitations, pulse skips, heart block
Any history of a heart murmur or valve prolapse?
Joint pain or swelling
Stiffness of the joints, neck, or back
Muscle pain or cramps
Twitching of the face or other muscles
Headache
Neck creeks and cracks, neck stiffness, neck pain
Tingling, numbness, burning or stabbing sensations, shooting pains
Facial paralysis (Bell's Palsy)
Eyes/Vision: double, blurry, increased floaters, light sensitivity
Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity
lncreased motion sickness, vertigo, poor balance
Lightheadedness, wooziness
Tremor
Confusion, difficulty in thinking
Difficulty with concentration, reading
Forgetfulness, poor short term memory
Disorientation: getting lost, going to wrong places
Difficulty with speech or writing
Mood swings, irritability, depression
Disturbed sleep-too much, too little, early awakening
Exaggerated symptoms or worse hangover from alcohol

It is very important to see a knowledgeable doctor.  No test is completely reliable and results can vary by lab.  Besides Lyme, ticks can also transmit several co-infections including Babesiosis, two types of Ehrlichiosis (HME & HGE), Bartonella, and Mycoplasma.  Many people who have Lyme are co-infected.  It may affect treatment choice and progress.  It is important to be tested for these by a Lyme reputable lab such as IgeneX in Palo Alto, CA.  Has your husband been tested for these?    

You can email me at ko_@bellsouth.net for doctor recommendations.

Are you aware of the Jarisch-Herxheimer Reaction (herx)?  Often, when people who have Lyme take antibiotics their symptoms get worse or they get new ones.  When the antibiotics kill the bacteria, toxins are released making them feel worse.  It can be scary when it happens, but it is a sign the antibiotics are working.  Although this reaction can vary individually, many people experience this at the beginning of treatment and every three to four weeks.  

During treatment, it is good for your husband to document his symptoms daily.  One way to do this is to list the three main symptoms he has each day with a numerical rating of their severity from 1-10.  Over time when he reviews this, he can see when his herxes occur and how he is responding to the meds.

It is also important to learn as much as possible.  I recommend reading Dr. Joseph Burrascano's 2005 Diagnostic Hints and Treatment Guidelines For Lyme and Other Tick Borne Illnesses at http://www.ilads.org/burrascano_0905.html  He is one of the top Lyme doctors in the country, and many Lyme doctors follow his protocols.  He also lists diet, supplement, and exercise recommendations.  I also recommend the books "Everything You Need To Know about Lyme Disease Second Edition" by Karen Vanderhoof-Forschner and "The Lyme Disease Solution" by Kenneth B. Singelton MD.


Tallison
Regular Member


Date Joined Jun 2007
Total Posts : 416
   Posted 10/13/2008 10:47 PM (GMT -6)   

Hi sickoflyme54,

If you e-mail me, I can send you some names.  I am in north jersey and go to NYC doctors.  I am glad to hear that your husband is starting to feel better!

Tracy


AmandaC
Regular Member


Date Joined Apr 2008
Total Posts : 69
   Posted 10/14/2008 9:12 AM (GMT -6)   
 
 
there is a llmd in plainview on long island who unlike many of the other doctors, does take insurance...dr. irwin ingwer.
 
you can email me if you have any other questions.
 
all the best.
 
amanda

kandinsky
Veteran Member


Date Joined Sep 2006
Total Posts : 2300
   Posted 10/14/2008 10:03 AM (GMT -6)   
Hi sickoflyme54 ~

I live in nyc. If you email me, I can share with you the names of the drs I go to. To get my email click on the envelope on the left side under my screen name.

Bellyboop
New Member


Date Joined Oct 2008
Total Posts : 5
   Posted 10/15/2008 11:54 AM (GMT -6)   
OK Does anyone have an ideas if My Western Blot test came up negative if I could still have Lyme? I took the ELSA and the Western blot -- both negative. But I still have a lot of wierd symptoms and I have taken so many blood tests I am beside myself. I live in Nassau county long island and I made an appt. with Dr. Ingwer - but it's not until Dec. Not sure if I can hold out. Any thoughts. Anyone?

ticker
Veteran Member


Date Joined Feb 2003
Total Posts : 9208
   Posted 10/15/2008 2:00 PM (GMT -6)   

Hi Bellyboop, welcome to the board!  I like your screen name : )

No test for Lyme is completely reliable, and results can vary by lab.  From what I understand, the ELISA is the least reliable test.  Which lab did your Western Blot?  Do you have a copy of it?  The CDC requires several bands to be present for the test to be positive; however, many people who have Lyme do not have this many bands.  Lyme doctors often look at which bands are present, some are specific for Lyme.  It is important to be tested by a Lyme lab such as IgeneX.  They use more sensitive testing and list more Lyme-specific bands on the Western Blot.

Please read my reply above.  It is also important to be tested for the co-infections listed.

You can email me at ko_@bellsouth.net for doctor recommendations.


docsweety
New Member


Date Joined Apr 2012
Total Posts : 1
   Posted 4/19/2012 8:17 PM (GMT -6)   
please give me names of some llmds in nj or ny , i do go to dr g in basking ridge but my symptoms only seem to worsen
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