HealingWell
Search Close Search
☰

Dr J (SC soon to be DC( Protocol)

Support Forums
>
Lyme Disease
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 10/21/2009 1:56 PM (GMT 0)
FYI I am "diarying" my progress on Dr J's protocol on a blog site: http://lymeandtheco-infections.blogspot.com/

When I first investigated pulsed therapy I was interested in reading about and hearing how people were doing on it - but found little out there, so decided to diary my experience.

I am committed to helping set up centers so that others can benefit from such treatments.

I am definitely the best I have ever been since beginning treatment 18 months ago. Now having energy and enthusiasm again is amazing.
Posted 10/21/2009 2:34 PM (GMT 0)
I would like to know the logistics of seeing Dr J. Do you go and stay at his clinic for several weeks? Do you live close by? And perhaps most important, how much does it cost? Does insurance cover any of it?
Posted 10/21/2009 2:53 PM (GMT 0)
No you do not stay there. You do travel to the clinic every 6 weeks or so. So travel is costly. My insurance covers my IV drugs and some of my office visits (80%).

If you are on IV therapy he charges $2000/month for monitoring and making nurses available if any problems or questions.

If not on IV the cost is just for office visits- I believe the first visit is $700 and much less for followups and less if you see the nurse practitioner- the prices are on his website.

I hope to get other doctors interested in joining a research link with him so that people would not have to travel or pay large fees to be part of a pulsed therapy protocol- which I believe is where Lyme treatments are headed in the future. My doctor (Boston area) is interested in becoming a satellite center and will plan to offer such therapies with other patients in the future.

Continuous antibiotics do not make sense over the long run, because they are so toxic (and the reason there is such debate going on amongst doctors). Pulsed therapies are sort of middle ground.

The infections we are treating are slow to multiply, so high dose pulsed therapy (aimed at all 3 bugs ie, Babesia, Bart and Lyme forms) makes sense (and there there is less potential for drug resistance). This is my opinion.
Posted 10/21/2009 6:11 PM (GMT 0)
What is pulsed therapy?
Posted 10/21/2009 7:31 PM (GMT 0)
It's when the antibiotics are not given everyday. Most of Dr J's protocols use antibiotics, (multiple antibiotics in high doses) on M,W, and F with weekends off and every 2-3 weeks a week or 2 off to see how you do and to "tease" the immune system back into action. a techniques used in AIDS patients.
Posted 10/21/2009 11:57 PM (GMT 0)
I could not find prices on his web site: do you have to email him to get that?
Posted 10/22/2009 11:09 PM (GMT 0)
pcpc 

Can I contact you by e-mail? I have a couple of questions,I see Dr J also! If its ok just e-mail me using the envelope ,so I can return with yours!

Mel

Posted 10/22/2009 11:41 PM (GMT 0)
sorry I don't recall- other than first visit with him was $700 and I think $500 for the NP. Can't recall followup prices- when you are on IV's the office visits are included in the monthly maintenance fees.
Posted 10/23/2009 3:32 AM (GMT 0)
pcpc

Thanks for the update and your blog address. I look forward to learning more there. It is good to hear that you are doing better.

Rose
Posted 10/23/2009 5:03 AM (GMT 0)
Hi pcpc,
I just got back from my 2nd visit - I've had my picc line for the last 7 months with the dr I used to have - the one I told you about earlier. But after my gallbladder collapsed on Rocephin without being given actigal or ursodiol to prevent that. I'm so glad I switched to Dr. J. I'm also doing the $2000/month but I have to go back in just 16 days. I'm not sure why so soon except he is so up in the air over which clinic he'll be in and all else that is going on for him. He did put me on the multiple IV's (thank goodness!) plus Deplin for energy and mood boost. - I'm having troube getting one insurance to deny it because you have to agree not to send any bills to this one, so I can never get the 2nd (better) insurance to use the out of network they promise to use. Sorry it took so long to get back to you! I just got back on Tuesday. Flew up there on my birthday on Monday and had an early appt on Tuesday and then flew back later on Tuesday. What a whirlwind. Still not sure what day it is - LOL! At least when he moves to D.C., airline tickets will be less expensive - of course then hotels will be more -
Posted 10/23/2009 5:14 AM (GMT 0)
Kristiana,

Are you still on Rocephin? What IV antibiotics will you be using? also, how is the Deplin working? I'd love to have just a little energy back again.
Posted 10/23/2009 6:00 AM (GMT 0)
Hi CajunGrl,
I had to stop the Rocephin altogether because after 12 weeks, it partially collapsed my gallbladder. An easy answer to that problem would have been to take either Actigall or Ursodiol (same thing) and it will prevent what I went through. Strange thing is that I knew this because my CAT is taking the same things!!! LOL! After being on Penicillin G IV for a month, and then switching docs, I am now on Clindamycin IV (it's great, even better than Rocephin for brain fog) and Merrem IV, and Minocycline (oral tablet) - flagyl later and I can't remember the others - still getting used to the schedule. Like the M, W, F "pulsing" of the meds. It gives your body a rest on Tues, Thurs and Sat-Sun.

Deplin was something even my psychiatrist had not heard of before. I went to http://www.deplin.com and read all about it. At first I couldn't find it so I read the reviews from a website that talked about it in some forum and the reviews were talking about it as this amazing energizing med/vitamin. I have only taken one so far and I think this takes 4-6 weeks but I'll keep you updated. Check it out online - I always look into these things that I've never heard of before, especially when they have so many positive reviews from a lot of different people. Hope this helps :)
Kristiana

Posted 10/23/2009 10:41 PM (GMT 0)
Kristiana
Thank you for the Deplin link,He put me on it also!
Mel
✚ New Topic ✚ Reply