Final LLMD recommendations / guidance NY area

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cppoly
Regular Member


Date Joined Nov 2013
Total Posts : 345
   Posted 3/30/2018 9:19 AM (GMT -6)   
Desperately need some input with choosing a LLMD. I have several recommendations and this is tough.

With my last LLMD, they just kept trying treatment after treatment without providing clear feedback on whether or not I had active lyme/coinfections until I eventually spent $10,000 without any improvement OR answers on what exactly I had. So I’m extremely frustrated at this point.

I can’t afford $10,000 again or anything close to that and unfortunately LLMDs are expensive so I’m trying to spend whatever money I have left very thoughtfully. All I’m looking for is a LLMD that can definitely tell me whether or not they can help me with chronic lyme/coinfections within the 1st or 2nd consults. I’m also trying not to randomly stumble upon someone good especially since a 1st and 2nd consult is going to cost me at least $1,000.

So I guess I’m not looking for a good LLMD but a GREAT LLMD, one that can once and for all put this issue to bed and give me clear guidance on what I have or don’t have.

Any feedback on any of the following doctors:

BR – NYC
EF – NYC
CC - NYC
DC – NY
MB – NYC
BA - NYC
LZ – NJ

If someone is willing to make STRONG recommendation for someone far away, I really would also consider that.

Feel free to add to the list if I’m missing.

Thanks

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32622
   Posted 3/30/2018 11:22 AM (GMT -6)   
Re: feedback. Did you have a known tickbite and/or EM? ...or testing the shows lyme?

Your past LLMD didn't ever comment on whether or not you have LD?

I have heard a few good reviews on BR in NYC.

..same for EF in NYC


Re: going further away. I just recently changed to the J Clinic in Washington, DC - based my decision on:

- need - my llnd here in Canada had pretty much given up on me once I plateaued (even though babesia wasn't treated)

- If I was going to go to the U.S. for treatment, I decided I would go to whichever one I thought I had the best chance for success.

- I know of several people who have gotten good results with him

- I like the pulsed approach. (only taking abx approx. 7 - 10 days per month for some of the protocols)

- I can do phone appointments - so saving on travel costs. (I think I can do two per year by phone)

- After the first two appts, the subsequent follow -ups are generally 3-4 months apart...so saving money on that as well.


It's too soon to see results in my case...but I wanted you to know WHY I chose that LLMD.
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./15 mino - to biaxi

cppoly
Regular Member


Date Joined Nov 2013
Total Posts : 345
   Posted 3/30/2018 12:37 PM (GMT -6)   
I have a positive babesia titer. I do not have enough bands to be IDC positive on the western blot but I have two positive Lyme C6 peptide tests which are 99% specific. The last LLMD I saw did bioresonance scanning and said lyme was not active stressor, however it occasionally picked up bartonella, mycoplasma on some visits and other visits picked up nothing. So we treated it but I never saw any improvement at all.

I called Dr. J's office in DC and was not happy that the first visit you do not see him and just meet with his staff for 2 hours (for $900 if I remember).

Rikky1
Veteran Member


Date Joined Jun 2015
Total Posts : 2860
   Posted 3/30/2018 1:24 PM (GMT -6)   
ah the olde bioresonance scanning. i'm not sure if that snake oil or legit but i can tell you it didn't work at all for me or others i know.

i like many others went through the same experience as you did with your LLMD. i went through 2 LLMD's and spent at least $25k before switching to Dr. J in DC.

there are no slam dunks in this business unfortunately.

garnet10
Regular Member


Date Joined Jul 2016
Total Posts : 32
   Posted 4/1/2018 2:13 PM (GMT -6)   
cppoly, may I e-mail you directly? Your e-mail is posted in your profile.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32622
   Posted 4/1/2018 5:40 PM (GMT -6)   
cppoly said...
I have a positive babesia titer. I do not have enough bands to be IDC positive on the western blot but I have two positive Lyme C6 peptide tests which are 99% specific. The last LLMD I saw did bioresonance scanning and said lyme was not active stressor, however it occasionally picked up bartonella, mycoplasma on some visits and other visits picked up nothing. So we treated it but I never saw any improvement at all.

I called Dr. J's office in DC and was not happy that the first visit you do not see him and just meet with his staff for 2 hours (for $900 if I remember).


$450 per hour isn't more than most LLMD's is it?

And...you only have appt.s every 3-4 months.

His staff are all trained and follow the protocols that he uses. They do consult with him as well.
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./15 mino - to biaxi

cppoly
Regular Member


Date Joined Nov 2013
Total Posts : 345
   Posted 4/2/2018 11:31 AM (GMT -6)   
Sorry I just got noticed more posts were added to this thread (it disappears so quickly these days).

Garnet10 you can e-mail me directly.

Girlie well now that you put it that way, it doesn't sound so bad.

I'm torn between seeing a LLMD who does a conventional physical exam and reviews blood work compared to LLMDs who do bioresonance scanning and review blood work.

Conventional physical exam I ACE it because I'm healthy by all measures except my sleep is horrendously choppy and restless.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32622
   Posted 4/2/2018 12:17 PM (GMT -6)   
cppoly said...
Sorry I just got noticed more posts were added to this thread (it disappears so quickly these days).

Garnet10 you can e-mail me directly.

Girlie well now that you put it that way, it doesn't sound so bad.

I'm torn between seeing a LLMD who does a conventional physical exam and reviews blood work compared to LLMDs who do bioresonance scanning and review blood work.

Conventional physical exam I ACE it because I'm healthy by all measures except my sleep is horrendously choppy and restless.


I'm not sure you'll ACE the J Clinic physical exam. Is it just your sleep that's affecting you? No balance issues....no reflex issues....weakness. They also palpitate your abdomen to look for liver/spleen swelling, heart rate, blood pressure...etc...etc.
If you have someone with you, they ask that person questions about your functioning as well.
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./15 mino - to biaxi

cppoly
Regular Member


Date Joined Nov 2013
Total Posts : 345
   Posted 4/2/2018 12:31 PM (GMT -6)   
Yea I'm in great physical condition and primarily have no red flags on my blood work, except for a few minor things. I've passed many physicals pretty easily. But my sleep disturbances are just so debilitating that I can't stay awake around 9 pm almost ever.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32622
   Posted 4/2/2018 12:39 PM (GMT -6)   
cppoly said...
Yea I'm in great physical condition and primarily have no red flags on my blood work, except for a few minor things. I've passed many physicals pretty easily. But my sleep disturbances are just so debilitating that I can't stay awake around 9 pm almost ever.



Passing the physical exam would not negate lyme and co's treatment anyway.

You had a positive Babesia test. Dr. J Clinic goes after Babesia early on...once you're stabilized.

Are sleep issues your only symptom?

My blood work prior to diagnosis had no red flags either.
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./15 mino - to biaxi

cppoly
Regular Member


Date Joined Nov 2013
Total Posts : 345
   Posted 4/2/2018 12:48 PM (GMT -6)   
That's right sleep is my only symptom, which happens to be debilitating in the sense it has ruined my social life and closely going after my marriage too.

garnet10
Regular Member


Date Joined Jul 2016
Total Posts : 32
   Posted 4/6/2018 10:39 AM (GMT -6)   
cppoly said...
Sorry I just got noticed more posts were added to this thread (it disappears so quickly these days).

Garnet10 you can e-mail me directly.

Girlie well now that you put it that way, it doesn't sound so bad.

I'm torn between seeing a LLMD who does a conventional physical exam and reviews blood work compared to LLMDs who do bioresonance scanning and review blood work.

Conventional physical exam I ACE it because I'm healthy by all measures except my sleep is horrendously choppy and restless.


cppoly, did you see Dr. S. for bioresonance analysis on LI? I have not had any success with practitioners who use “energy” methods for determining what therapy will work.

garnet10
Regular Member


Date Joined Jul 2016
Total Posts : 32
   Posted 4/6/2018 10:45 AM (GMT -6)   
cppoly said...
Desperately need some input with choosing a LLMD. I have several recommendations and this is tough.

With my last LLMD, they just kept trying treatment after treatment without providing clear feedback on whether or not I had active lyme/coinfections until I eventually spent $10,000 without any improvement OR answers on what exactly I had. So I’m extremely frustrated at this point.

I can’t afford $10,000 again or anything close to that and unfortunately LLMDs are expensive so I’m trying to spend whatever money I have left very thoughtfully. All I’m looking for is a LLMD that can definitely tell me whether or not they can help me with chronic lyme/coinfections within the 1st or 2nd consults. I’m also trying not to randomly stumble upon someone good especially since a 1st and 2nd consult is going to cost me at least $1,000.

So I guess I’m not looking for a good LLMD but a GREAT LLMD, one that can once and for all put this issue to bed and give me clear guidance on what I have or don’t have.

Any feedback on any of the following doctors:

BR – NYC
EF – NYC
CC - NYC
DC – NY
MB – NYC
BA - NYC
LZ – NJ

If someone is willing to make STRONG recommendation for someone far away, I really would also consider that.

Feel free to add to the list if I’m missing.

Thanks


We are currently seeing Dr. P in Wilton, CT. He only treats the Lyme and coinfections, however; he does not treat any other dysfunction associated with the Lyme. He is abreast of all the latest research.

For sleep we found this helpful. Of course, as your Lyme and Babesia get properly treated, your insomnia will likely improve.

https://www.juliarosscures.com/eliminating-the-top-causes-of-insomnia/

Post Edited (garnet10) : 4/6/2018 10:57:00 AM (GMT-6)


Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32622
   Posted 4/6/2018 10:52 AM (GMT -6)   
garnet10 said...
cppoly said...
Desperately need some input with choosing a LLMD. I have several recommendations and this is tough.

With my last LLMD, they just kept trying treatment after treatment without providing clear feedback on whether or not I had active lyme/coinfections until I eventually spent $10,000 without any improvement OR answers on what exactly I had. So I’m extremely frustrated at this point.

I can’t afford $10,000 again or anything close to that and unfortunately LLMDs are expensive so I’m trying to spend whatever money I have left very thoughtfully. All I’m looking for is a LLMD that can definitely tell me whether or not they can help me with chronic lyme/coinfections within the 1st or 2nd consults. I’m also trying not to randomly stumble upon someone good especially since a 1st and 2nd consult is going to cost me at least $1,000.

So I guess I’m not looking for a good LLMD but a GREAT LLMD, one that can once and for all put this issue to bed and give me clear guidance on what I have or don’t have.

Any feedback on any of the following doctors:

BR – NYC
EF – NYC
CC - NYC
DC – NY
MB – NYC
BA - NYC
LZ – NJ

If someone is willing to make STRONG recommendation for someone far away, I really would also consider that.

Feel free to add to the list if I’m missing.

Thanks


We are currently seeing Dr. P in Wilton, CT. He only treats the Lyme, however; he does not treat any other dysfunction associated with the Lyme. He is abreast of all the latest research.


He treats the coinfections though, right? (Bart, Babesia.)

Re: the dysfunctions - I believe that is usually the way it is. i.e. If you have heart issues due to lyme, you need to see a cardiologist....if you have frozen shoulder...you may need to see a PT...etc.
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./15 mino - to biaxi

garnet10
Regular Member


Date Joined Jul 2016
Total Posts : 32
   Posted 4/6/2018 10:55 AM (GMT -6)   
Girlie said...
garnet10 said...
cppoly said...
Desperately need some input with choosing a LLMD. I have several recommendations and this is tough.

With my last LLMD, they just kept trying treatment after treatment without providing clear feedback on whether or not I had active lyme/coinfections until I eventually spent $10,000 without any improvement OR answers on what exactly I had. So I’m extremely frustrated at this point.

I can’t afford $10,000 again or anything close to that and unfortunately LLMDs are expensive so I’m trying to spend whatever money I have left very thoughtfully. All I’m looking for is a LLMD that can definitely tell me whether or not they can help me with chronic lyme/coinfections within the 1st or 2nd consults. I’m also trying not to randomly stumble upon someone good especially since a 1st and 2nd consult is going to cost me at least $1,000.

So I guess I’m not looking for a good LLMD but a GREAT LLMD, one that can once and for all put this issue to bed and give me clear guidance on what I have or don’t have.

Any feedback on any of the following doctors:

BR – NYC
EF – NYC
CC - NYC
DC – NY
MB – NYC
BA - NYC
LZ – NJ

If someone is willing to make STRONG recommendation for someone far away, I really would also consider that.

Feel free to add to the list if I’m missing.

Thanks


We are currently seeing Dr. P in Wilton, CT. He only treats the Lyme, however; he does not treat any other dysfunction associated with the Lyme. He is abreast of all the latest research.


He treats the coinfections though, right? (Bart, Babesia.)

Re: the dysfunctions - I believe that is usually the way it is. i.e. If you have heart issues due to lyme, you need to see a cardiologist....if you have frozen shoulder...you may need to see a PT...etc.[/

Yes. I fixed my post.
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