llmd in New jersey

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springsjean
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Date Joined Mar 2009
Total Posts : 2050
   Posted 3/22/2009 10:03 AM (GMT -6)   
Would greatly appreciate any recommendations for llmd in nj.  Am awaiting retest for lymes.  Three years of horrific symptoms,told meno, hashi's, anxiety, fibro, now obtaining copy of old labs looks like diagnosis was questionable three years ago but dr. did not tell me or retest. 
 
Could someone recommend a llmd in central nj?  I am at wits end with joints now really bothering me right before long awaited vacation.  Thanks. 

ticker
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Date Joined Feb 2003
Total Posts : 9208
   Posted 3/22/2009 3:53 PM (GMT -6)   

Hi springsjean, welcome to the board!

I am sorry you have been sick for so long. Below is a Lyme disease 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

When Lyme disease is a possibility, it is very important to see a knowledgeable doctor.  Many doctors do not understand Lyme and treat with outdated protocols.  No test is completely reliable, and results can vary by lab. It is my understanding the ELISA or titer is the least reliable test and the one most doctors run first.  Is this the test you had done?

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.  Have you been tested for these?

If you need a doctor recommendation, you can email me at ko_@bellsouth.net  Doctor names are not posted on the board.

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. 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. Singleton MD.

Hang in there okay?  Good help is available.


springsjean
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Date Joined Mar 2009
Total Posts : 2050
   Posted 3/22/2009 4:05 PM (GMT -6)   
Thank you so much.  I've had a rough couple of years but I think I may finally get the help I need.  I will be shocked if this is not lyme's.  Had a terrible stiff neck in 2005 which made me go to chiro for first time cause I literally couldn't move it.  Followed with leg pains, trouble going up stairs.  Then got infection in mouth which resulted in year of extensive dental work. Started durilng that time  for horrific anxiety and crazy crazy symptoms and a diagnosis of early menopause.  During that time, family member became extremely ill and died unexpectedly after 8 months in ICU.  I kept insisting something was wrong and visited dr. after dr. who said anxiety and meno.  Then found new dr. who diagnosed mild hashi's but felt something was not right.  It was only upon me obtaining labs from first dr. seen back in 2006 did I realize that 3 bands had come back abnormal.  I've had severe joint pains, daily headaches, tight jaw, facial numbness, alcohol intolerance, exercise intolerance, heart pains and palps, just to name a few.  I'm just concerned now that if I'd had it a few years that the test will come back negative again. 

ria123
Regular Member


Date Joined Aug 2008
Total Posts : 336
   Posted 3/23/2009 9:00 AM (GMT -6)   
I have a very good LLD in New Jersey email me at Ria130@aol.com and I will give you the info..

springsjean
Forum Moderator


Date Joined Mar 2009
Total Posts : 2050
   Posted 3/23/2009 2:01 PM (GMT -6)   

Will do.  Thank you.

But now the EIA screen came back negative.  Is that pretty reliable or no?


saxmar
Veteran Member


Date Joined Feb 2007
Total Posts : 666
   Posted 3/24/2009 7:43 AM (GMT -6)   
I see a good LLMD in Jackson NJ. Is that close to you?

If you haven't found an LLMD post here again and I will give you my email.

saxmar

springsjean
Forum Moderator


Date Joined Mar 2009
Total Posts : 2050
   Posted 3/24/2009 2:25 PM (GMT -6)   
Thank you so much.  Have an apt. with a llmd on tuesday. 

becky723
Regular Member


Date Joined Feb 2009
Total Posts : 31
   Posted 3/25/2009 8:12 PM (GMT -6)   
hi springsjean, i ended up traveling to nj to find a llmd. i haven't got my test results yet, so i can't really comment if he's any good or not. but my search came up with alot of llmds in nj. good luck

becky723
Regular Member


Date Joined Feb 2009
Total Posts : 31
   Posted 4/22/2009 5:36 PM (GMT -6)   
met my llmd. don't like him. not very informative. he just put me back on doxy and said see you next month.

ticker
Veteran Member


Date Joined Feb 2003
Total Posts : 9208
   Posted 4/22/2009 5:51 PM (GMT -6)   

Hi becky723.  I am sorry you do not like your doctor.  What dose of Doxy did he put you on?

Feel free to email me at ko_@bellsouth.net for recommendations.

 

springsjean
Forum Moderator


Date Joined Mar 2009
Total Posts : 2050
   Posted 4/22/2009 6:08 PM (GMT -6)   
Becky, funny I do not like the guy I went to either.  In and our in 15 minutes after trying to get a diagnosis for over 3 years.  I am actually switching right away and have first apt. with another guy in Little Silver next week.  I've had enough of these doctors who think who they are and never even make eye contact.  I need a human being that can talk to people.  Just curious if the dr. you didn't like was in Howell? 

becky723
Regular Member


Date Joined Feb 2009
Total Posts : 31
   Posted 4/27/2009 8:06 PM (GMT -6)   
he was in howell. i'm really furious now. when i first called him i asked if he could tell if i had an active infection or not. i know i had lyme before and had positive antibodies. he assures me he could, he had a special test from a lab in CA. well i got the results and it's the same exact tests my Dr. did and he said there is know way of knowing if it's old or new. i really feel like i've been ripped off. i've taken time off work and traveled 500mi. round trip, payed out of pocket, for nothing.

springsjean
Forum Moderator


Date Joined Mar 2009
Total Posts : 2050
   Posted 4/28/2009 7:00 AM (GMT -6)   
I thought so. I am off to another guy today so I'll will let you know how he is. All I ask is for someone to listen and explain and then treat appropriately. Is that too much to ask for?

alfers
Veteran Member


Date Joined May 2005
Total Posts : 2671
   Posted 4/28/2009 8:32 AM (GMT -6)   
That doc does listen and treat properly, but he's just very reserved and you have to ask him a lot of questions to get information. I agree that the appointments are disappointingly short, but he does know what he's doing. I saw him for 2 years and he got me better.
Lyme and co-infections since approximately 2002. Diagnosed in 2005. Treated for two years solid. Diagnosed with Lymphomatoid Papulosis in October 2007. Currently back on abx.

Moderator for Lyme Disease forum


springsjean
Forum Moderator


Date Joined Mar 2009
Total Posts : 2050
   Posted 4/28/2009 2:41 PM (GMT -6)   
I hear that he is very good but I need to be able to communicate with a dr. I do not feel I should have to do all the talking and research before I go to him. I also could not hear him well at all so for me it wasn't the right place.

becky723
Regular Member


Date Joined Feb 2009
Total Posts : 31
   Posted 5/8/2009 6:48 PM (GMT -6)   
I have asked lots of questions and got short dismissive answers, he acted like i had a lot of nerve to question him. i'm glad he worked for you, but i'm now beginning to wonder if this whole lyme thing is just a scam.

KATIE1217
New Member


Date Joined Jun 2009
Total Posts : 2
   Posted 6/18/2009 2:01 PM (GMT -6)   
I am new to this forum but not to Lymes. I see an LLMD in Jackson NJ. While I believe she is thorough I am beginning to think  LLMD is a bit of a scam. She ordered me to go and have a nuclear scan of my thyroid and then charged me to call in the pre-auth for the test. She will not give you test results over the phone. Since she doesn't accept ins (most don't) you have to see her to get your results. The visits are not cheap either. My primary Dr says she is a waste of time and I am beginning to wonder. I feel worse than ever and am on 22 pills a day. Mostly supps but still thats alot of meds.  I was dx in May 2009 by my primary and will find out today when I go back to LLMD to get my igenX results.  I am wondering why LLMD'S don't accept ins? There are specialists for every disease and they accept insurance. Is lymes not recognized as a disease??

RottenDog
Veteran Member


Date Joined Apr 2009
Total Posts : 1013
   Posted 6/18/2009 2:23 PM (GMT -6)   
i'll tell you why i think they dont take ins. 1 is by not taking it they stay under the radar by not tunring in to ins compys. this why they can treat you on long tearm abx without notiest. just my thinking is all.

i hope your better soon
   RD
                                                                                                                 
 
still looking for answers
 


Villi Phanatick
Regular Member


Date Joined Nov 2008
Total Posts : 28
   Posted 6/18/2009 7:44 PM (GMT -6)   
Katie, a couple things:

1.) Many good doctors, be it lyme doctors or otherwise, don't take insurance for a variety of reasons. Lyme doctors are probably more likely to not take insurance due to the controversial aspects of lyme, but there are plenty of doctors in other specialties who similarly don't take insurance.

2.) The doctor you're referring to is actually relatively cheap (I went to her for a while), not only in comparison to other lyme doctors but to doctors period. It's just that you have to pay out of pocket and don't have the cost masked by insurance. I wouldn't be surprised if your primary doctor bills out at a higher hourly rate than the lyme doctor you see. IIRC, a 2 minute appt with my primary due to a run of the mill viral/bacterial infection was billed out at $175 and I had a 5 minute appt with a non-lyme specialist billed out at over $700 recently.

3.) Most or at least many doctors want to discuss test results with you rather than just giving you the results. If the test results were all negative and a clinical diagnosis wouldn't indicate otherwise, then an appt may be a waste of time. But if you have any positive results, then hopefully you and your doctor are discussing the best course of action and there are benefits to the appt other than simply receiving the test results.
charlie

diagnosed with lyme disease - May, 2007


KATIE1217
New Member


Date Joined Jun 2009
Total Posts : 2
   Posted 6/18/2009 8:01 PM (GMT -6)   
Thanks Charlie.
I agree with you on most of it. My primary is not like most. He does spend a great deal of time and calls me back, himself, whenever I call. Whatever he charges I don't see it. I only pay a co-pay. He put me on the same meds as the LLMD except for the supplements.

Why is lymes so controversial, if I may ask? Is it not a real disease?

alfers
Veteran Member


Date Joined May 2005
Total Posts : 2671
   Posted 6/19/2009 7:36 AM (GMT -6)   
Hi Katie,
It is a real disease, but there's a lot of controversy over "chronic lyme." There's actually a great wikipedia article describing the controversy -- go to wikipedia and look up "lyme controversy." It's really informative.
Lyme and co-infections since approximately 2002. Diagnosed in 2005. Abx for two years straight, then on and off for another year. Off abx since fall 2008 and feeling great (lyme-wise)! Also diagnosed with lymphomatoid papulosis and slightly low thyroid function.

Moderator for Lyme Disease forum


alfers
Veteran Member


Date Joined May 2005
Total Posts : 2671
   Posted 6/19/2009 7:38 AM (GMT -6)   
Okay, I take it back -- the wikipedia page doesn't exist anymore. If you look up "lyme disease" there, there is a small section on the lyme controversy that could be helpful.
Lyme and co-infections since approximately 2002. Diagnosed in 2005. Abx for two years straight, then on and off for another year. Off abx since fall 2008 and feeling great (lyme-wise)! Also diagnosed with lymphomatoid papulosis and slightly low thyroid function.

Moderator for Lyme Disease forum


believing
New Member


Date Joined Jan 2009
Total Posts : 15
   Posted 6/20/2009 2:03 PM (GMT -6)   
I agree with the above posts. The doctor refered to above is reserved. I left him because I did not think his dosing was high enough in comparison to Dr. B's 2008 guidelines, although many people said he helped them significantly and he is very inexpensive in comparison to others. (see Dr B's guildelines from a link found from searching this forum). I think Dr. E also referred above is very good. As for the cost out of pocket...yes, many different specialists today charge out of pocket because they want to focus on treating the patient, not hasseling with insurance companies. After you live with lyme for awhile you'll be happy to pay anything out of pocket just to get good LLMD advice! There are many places you can learn about the lymes controversy..and you need to educate yourself (ILADS.org).
believing
 
lyme dx 11/08
low dose doxy 6 weeks
Bactrim & Difulcan; 
PC Nomi, Samento, accupuncture, sauna, KMT
Mino/biaxin/rifampin presently
mother to two children with lymes
 


TonyDewitt
New Member


Date Joined Jul 2012
Total Posts : 6
   Posted 7/12/2012 2:40 PM (GMT -6)   
Did anyone ever find a LLMD in New Jersey? If so, please clue me in.

achievinggrace
Veteran Member


Date Joined Nov 2009
Total Posts : 2477
   Posted 7/13/2012 6:38 AM (GMT -6)   
Hi Tony,

I have a very good LLMD in NJ.

Just shoot me an email and I will give you the information. You can also enable your email option in your profile so other members can send you their suggestions.
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