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» LymeNet Flash » Questions and Discussion » Seeking a Doctor » LLMD in NJ- willing to go to NYC and PA

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Author Topic: LLMD in NJ- willing to go to NYC and PA
afiya4health
Junior Member
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I am looking for an LLMD in NJ or in the surrounding areas. I live in south Jersey. Please PM or reply.

Also I've been noticing on other people's request for LLMDs in NJ that 2 users keep replying with "There are no good llmds in NJ", yet they themselves don't seem to be from or live in NJ to justify these statements. Why is that?

I'm looking for recommendations with personal experience please. Or at least a current up to date list.

Posts: 7 | From South Jersey | Registered: Jul 2017  |  IP: Logged | Report this post to a Moderator
TF
Frequent Contributor (5K+ posts)
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Hi, afiya4health.

I am one of the people who will not recommend any of the lyme doctors in New Jersey. I live in Maryland.

I and one other poster seem to be pretty much the 2 people who are consistently trying to help NJ folks find lyme doctors. Most of the other people on LymeNet don't jump in and help people find lyme doctors. Many are too sick to do so, of course.

So, that is why you see me and one other poster trying to give out info on NJ doctors all the time.

I started out over 13 years ago helping people in my area find the good lyme doctors. But, people from Pa, NJ, Va, etc. kept writing to me telling me their terrible experiences with their doctors and asking me for someone better.

I now have over 7,000 emails from lyme patients. Many of these talk about their doctors. I eventually started keeping copies of these emails by doctor name.

Over time, I became friends with a number of lyme patients who live in New Jersey. A few of them told me all the lyme doctors in NJ that they had tried.

A number of them told me that none of the lyme doctors in NJ were any good. I eventually had one friend in NJ talk on the phone with another person in NJ who was having a hard time getting good lyme care in NJ.

This friend was amazed to hear this woman say all the same things about the NJ lyme doctors that he had experienced. Both people had been treating their lyme with a number of NJ doctors for YEARS with no success.

I never experienced any lyme doctors in NJ. My doctors were not in that state at all. But, after having so many people in NJ tell me the same things about the NJ lyme doctors, I decided that I should believe them.

Some of the stories people have told me through LymeNet are truly TERRIBLE about some of the big name lyme doctors in NJ. These people can't all be wrong, especially when they are all saying the same thing.

So, after so many years, I concluded that there was nobody in NJ worth recommending to you guys.

Some other long-time LymeNet posters have also commented about NJ lyme docs and their comments agree with what I heard from the patients in NJ.

Here are some quotes from various lyme sufferers in NJ who have gone to the big name lyme docs in NJ:

Patient #1:

"I am in North Jersey. I do not trust anyone in the NY/NJ/PA Conn area except Dr. H. I have seen the ugly side of what we offer up here and it is not nice."

Patient #2:

" I have seen every supposed LLMD in NJ. Finally after many years of sub-standard treatment I finally went to one of the top LLMD 's in the country and have made great stridesite. PM me if you would like more information. DW "

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=2;t=027675;p=0

Patient #3:

"I agree with TF. I am in NJ and would not use any of the LLMDs here.

I will pm you with more info." (Bitten in Bergen)

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=2;t=022550;p=0

As you can see, some from NJ post and say that they agree with me that there is nobody to recommend in NJ.

So, now your mystery is solved! Just by reading old posts, you will find MANY lyme patients who say this about the NJ doctors!

If these folks were brand new to lyme I wouldn't necessarily trust their reports. But, when it is people who have seen the top NJ doctors--a number of them--and they all agree, what do you conclude?

The top NJ lyme docs are the ones with name recognition, who speak at lyme conferences, etc.

So, just by being in the lyme world for over 15 years, attending and viewing the lyme conferences (numerous speakers) and on LymeNet most of these years trying to help people find good lyme treatment, I have learned about a lot of lyme specialists in a lot of states.

I got rid of lyme, babesiosis, and bartonella over 12 years ago now by going to a doctor who followed the Burrascano protocol. Then, I sent at least 5 of my friends to Burrascano type doctors and they also got rid of their lyme.

So, I believe in the Burrascano protocol because I have seen it work over and over again. I have heard Burrascano speak a number of times and his expertise is obvious.

When he was still practicing, they came from all over the world to be treated by him. He was the #1 lyme doctor in the world.

Because of all of this, I only recommend lyme specialists who follow the Burrascano protocol. I suggest you study the protocol (and the improvements that some of the top lyme docs have made to it) and decide for yourself how you want your lyme treated. The protocol is here:

http://www.lymenet.org/BurrGuide200810.pdf

Lyme specialists are free to treat lyme any way they want. So, some use just herbs, some use low-dose antibiotics, some do their own thing (whatever seems to work for their patients) and some follow the Burrascano protocol. Others follow Dr. L's protocol or Dr. J's pulsing protocol, etc.

A lyme specialist will not change how he treats lyme just for you. So, you need to find out how a doctor treats lyme and then decide if that is how you want your case of lyme treated.

As you can see, that means learning a lot about how the various lyme doctors treat. The learning curve is great.

Hope this helps you. I stick around LymeNet just to help new people like you get through that tough learning curve. I myself wasted over 2 years going to lousy lyme doctors recommended to me by a lyme support group leader before I started to study lyme treatment for myself.

I am trying to help people not make the mistakes I made before I learned about the various ways to treat lyme disease.

I see many new people on LymeNet who are on inadequate lyme treatment. These people will NEVER get rid of their lyme if they stick with their current lyme doctor.

That's why I always say that when it comes to lyme diease, there is NO SUBSTITUTE for an educated patient.

The doc is the key to getting rid of this horrendous disease. I can't emphasize that enough. The doc is the key!

You also may be interested in reading a post I wrote a number of years ago entitled "What Makes a Lyme Doctor Top Notch." The LymeNet moderators thought it was so good that they put it permanently at the top of the Medical Questions section under "Important Info on Lyme and Cos,"

It is here:

http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/115161?#000001

p.s. If my old PC had not been infected with ransomware, I could have given you many, many more quotes from NJ lyme patients. I had pages and pages of them. Due to the ransomware infection, all of those files are now unavailable to me.

Posts: 9799 | From Maryland | Registered: Dec 2007  |  IP: Logged | Report this post to a Moderator
afiya4health
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"Because of all of this, I only recommend lyme specialists who follow the Burrascano protocol."

But you haven't sent me any lyme specialists names?!! I posted here in seeking a doctor section and yet no one has sent me anything?!

Posts: 7 | From South Jersey | Registered: Jul 2017  |  IP: Logged | Report this post to a Moderator
Tincup
Honored Contributor (10K+ posts)
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Hey there in New Jersey!

I don't agree with most of what the previous poster shared, so moving forward...

You can go to www.MarylandLyme.org and look at the menu to your left you will see "DOCTOR REFERRALS".

Click there to find the names and contact information for health care professionals in many fields who are treating Lyme & TBD's in all of the states that have them.

Once you review their websites and/or contact the professionals offices and get information straight from the horse's mouth, then you can chose a few that you feel might be of help with your particular situation and perhaps then get specific information from patients about them if you'd like.

I think that may be easier for you. At least I hope so.

Here are some ways to locate alternative health care professionals too if desired.

https://sites.google.com/site/lymedoctors/alternative

Good luck!

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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TF
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I sent you a name.
Posts: 9799 | From Maryland | Registered: Dec 2007  |  IP: Logged | Report this post to a Moderator
lymehope
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Hi afiya4health
I have not experience NJ doctors, but I can tell you about NY.
THERE ARE NO GOOD doctors in NY. Many people go to another state to find good doctors

I tried several doctors in NY without any improvement and at huge expense. I though erroneously that if you spend in an expensive treatment you have a better chance to get better quicker.

You must do your research on treatments. There are few doctors that follow the Burrascano Protocol. I believe this is what is working for me. However everyone is different.

It is less than one year that TF sent me a list of doctors she recommended. I am very thankful to TF, this doctor is changing my life. You must go to doctors that have success in getting people well. Many treat lyme but do not get you well.

TF will give you all the information and best guidance.
However If you have any questions please PM me.

Posts: 51 | From new york | Registered: Aug 2016  |  IP: Logged | Report this post to a Moderator
Tincup
Honored Contributor (10K+ posts)
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QUOTE- "THERE ARE NO GOOD doctors in NY."

[rant] [Roll Eyes] [loco] [shake]

I can't think of any statement I've seen over the years that is more false or worse than this one.

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

Posts: 19236 | From The Moon | Registered: Jun 2004  |  IP: Logged | Report this post to a Moderator
afiya4health
Junior Member
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Tincup,

What good doctors are in NY?
Also the link and list you gave me is a bit outdated. I saw Dr. E in NJ and he was horrible and I would never consider him an LLMD.

Do you know anyone who went to a llmd in NY and got better, and which llmd was it?

[ 08-21-2017, 11:55 AM: Message edited by: faithful777 ]

Posts: 7 | From South Jersey | Registered: Jul 2017  |  IP: Logged | Report this post to a Moderator
Tincup
Honored Contributor (10K+ posts)
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QUOTE- "I tried several doctors in NY without any improvement and at huge expense."

[confused] [dizzy] [confused]

"tried SEVERAL doctors" doesn't even come close to the 60 plus Lyme treating doctors located in NY that I know about.

So.....

Not only are those horrendously false statements (lies), and the one that keeps coming up about NJ (more lies), hurting the doctors- THE ONLY ONES IN THE WORLD WHO ARE TRYING TO HELP US AS BEST THEY CAN- they are hurting patients too.

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

Posts: 19236 | From The Moon | Registered: Jun 2004  |  IP: Logged | Report this post to a Moderator
afiya4health
Junior Member
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Tincup,

You still didn't answer my questions. Again:

What good doctors are in NY?
Also the link and list you gave me is a bit outdated. I saw Dr. E in NJ and he was horrible and I would never consider him an LLMD.

Do you know anyone who went to a llmd in NY and got better, and which llmd was it?

[ 08-21-2017, 11:54 AM: Message edited by: faithful777 ]

Posts: 7 | From South Jersey | Registered: Jul 2017  |  IP: Logged | Report this post to a Moderator
Tincup
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QUOTE- "Also the link and list you gave me is a bit outdated."

Well, not sure how you came to that conclusion, but I'm listening.

It was assembled about 18 months ago and is updated as needed or as I get additional information.

However, if you find any names of health care professionals on there that are no longer practicing, please let me know.

It isn't easy for me to keep up with 50 individual states lists and all the other things I do, so any help someone can offer is appreciated.

QUOTE- "I saw Dr. Exxxxx in NJ and he was horrible and I would never consider him an LLMD."

If he can't make you happy I'm afraid you will have an extremely difficult time finding someone who will meet all your needs and/or demands.

He was one of the first (brave) doctors ever, anywhere, to take on Lyme patients and buck the system so they could be treated. He did this during a time where we knew very little about Lyme and tick borne diseases, so it was very difficult for all of the early ones. Still is actually.

He is published multiple times in journals on Lyme and Bartonella issues (one of the first if not THE first to discover Bartonella in Lyme patients)- which is a huge deal- and has been treating Lyme patients since the 1980's (possibly earlier).

QUOTE- "Do you know anyone who went to a llmd in NY and got better, and which llmd was it?"

That is so ridiculous of a question it makes me laugh. Of course I do!

I've literally sent tens of thousands of patients (if not hundreds of thousands) to Lyme treating professionals in NY over the past three decades. If that was happening I wouldn't still be doing it.

Were all of them totally cured? No. But, that isn't the doctor's fault.

It is the IDSA/CDC idiots who got us all in this situation, the sickening politics, the insurers, the power of the diseases, the faulty tests and studies based on those tests, and the fact patients are all different and respond differently as is what happens with any disease or condition.

Additionally, most patients weren't able to get to someone who knew what they were doing before the infections began permanently destroying them both mentally and physically.

Because of that, some people will only improve some, not 100%. Some may be able to halt the destruction or progression only, but not return to full functioning.

Once seen by a LLMD, I'll estimate 90% are finally properly diagnosed and/or treated and showed improvements. Most don't hang out here because they went back to their lives and their families which had been put on hold for so long.

And remember, the NJ/NY doctors often have the worst of the worst patients. Many people go to them specifically because those are are most experienced.

It is my belief if they can't help you, and there are some patients that they can't, then no one can.

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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Tincup
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QUOTE- "Tincup, You still didn't answer my questions. Again:... "

First, I was responding to the other posts that were ahead of you. Once I was done with them and I saw your most recent post, right away I started working on another response to you.

Please remember we are all volunteers here and no one is required to answer anyone or help them in any way.

In fact, I simply stopped by tonight to see if someone was without any responses at all and happened to see this thread had more responses, or I wouldn't have even read it.

It is also rather late on a Sunday night (not a time when many are around, especially with school starting soon). And because we are often ill ourselves we are seldom available 24/7 or in "real time" at LymeNet to assist everyone who has questions.

Please also note, even though I don't agree with the above posters on the NJ/NY 'all doctors are bad there theory', it still appears you forgot to thank TF and LymeHope for their efforts to assist you.

I can tell it took them a good while to put together that much information, especially with additional quotes and links, to try to make it easier for you.

I'm done here, so if you want to thank them and perhaps later get more information, I think that would be appropriate.

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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afiya4health
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Tincup,

Ok you have a point in me not thanking TF and lymehope, so both of you i thank you. BUT TF only gave me 1 llmd's name in the entire country and that name wasn't in NJ or anywhere near it (Maryland/Washington DC is a good 3 hours away). On this forum it says to title the state you are seeking an llmd in. Yet it seems that it doesn't matter since you only send me one name.

And Tincup please do not chastise me after you were rude to lymehope making the crazy symbol and all. "QUOTE- "THERE ARE NO GOOD doctors in NY."

[rant] [Roll Eyes] [loco] [shake] "

You didn't have to do that. And yes the list you give me is outdated. There are a few doctors names I dont see on there that I heard of, one is Dr. Z in NJ.
And your little remarks on Dr. E***** are completely uncalled for. "QUOTE- "I saw Dr. Exxxxx in NJ and he was horrible and I would never consider him an LLMD."
If he can't make you happy I'm afraid you will have an extremely difficult time finding someone who will meet all your needs and/or demands.
He was one of the first (brave) doctors ever, anywhere,"

So if he can't make happy I'm just doomed to be sick. Absolutely rude. When I went to see him he wouldn't even TREAT me. HE said since my tests came back negative that I don't have lyme or bart but for $400 out of pocket I can go visit neurologist friend to look at me in north jersey (2 hours away from home). Just because he was the first doesn't mean he hasn't changed. I was having active Bart symptoms and told him this and he literally didn't care (this was 3 years into seeing another llmd).

Now I will apologize to you Tincup because I confused your post with lymehope's post, so I thought she had sent the Marylandlyme.org link and that you had sent your rude reply to her to me.

"It is also rather late on a Sunday night (not a time when many are around, especially with school starting soon). And because we are often ill ourselves we are seldom available 24/7 or in "real time" at LymeNet to assist everyone who has questions."

Please do not make it seem like I was sitting here every 5 minutes demanding an answer. I waited literally an entire day for TF to respond to me AFTER she told me she had a Burasscano dr. name. So i was waiting for a PM that didn't come. And then when you responded to lymehope at 12am I got the notification so I responded 5 mins later.

***edited name of LLMD***

[ 08-21-2017, 09:44 PM: Message edited by: Lymetoo ]

Posts: 7 | From South Jersey | Registered: Jul 2017  |  IP: Logged | Report this post to a Moderator
   

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