Dr.J maintenance protocol

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DavidSharpe
New Member


Date Joined Mar 2016
Total Posts : 6
   Posted 10/5/2017 12:11 PM (GMT -6)   
Hi everyone,

I am currently a patient at Dr.J's clinic in DC, and was recently put on maintenance therapy after about a year and 8 months of oral pulse therapy. I have made a measurable improvement with therapy after getting worse and worse for several months. Unfortunately, I am still symptomatic on my off weeks --sometimes significantly. Even though I experience side effects on medication, I feel much better on them than off. I sometimes think i am not ready for maintenence therapy.

I was wondering if anyone could share their experience at this stage of therapy or anything they have heard from other patients. I'd really appreciate any help.

Hoagie
Regular Member


Date Joined Jul 2017
Total Posts : 235
   Posted 10/5/2017 12:26 PM (GMT -6)   
DavidSharpe said...
Hi everyone,

I am currently a patient at Dr.J's clinic in DC, and was recently put on maintenance therapy after about a year and 8 months of oral pulse therapy. I have made a measurable improvement with therapy after getting worse and worse for several months. Unfortunately, I am still symptomatic on my off weeks --sometimes significantly. Even though I experience side effects on medication, I feel much better on them than off. I sometimes think i am not ready for maintenence therapy.

I was wondering if anyone could share their experience at this stage of therapy or anything they have heard from other patients. I'd really appreciate any help.


I just finished with my 2nd month on Dr J's pulsing therapy. I feel I am getting better in some areas, but getting worse in others. How many months into the protocol until you actually started seeing improvement?

BTW, Sry I can't help you with your question as I am still at the beginning of treatment.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 26401
   Posted 10/5/2017 12:27 PM (GMT -6)   
David - your prior post in another thread mentioned you were just put on a Bartonella protocol.

That is different from the maintenance therapy isn't it?

Or are you on a bart maintenance therapy protocol?


What is Dr. J. saying about the fact that you feel worse when you're on the "OFF" weeks...and you don't t think you're ready for the Maintenance stage?


Question: How long was your Babesia stage?


Also wanted to mention - you really should change your screen name - if that is indeed your name.
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

Post Edited (Girlie) : 10/5/2017 1:19:49 PM (GMT-6)


DavidSharpe
New Member


Date Joined Mar 2016
Total Posts : 6
   Posted 10/6/2017 8:59 AM (GMT -6)   
Thanks for helping me with clarifying, Girlie. I apologize for the confusion. (And btw, I am just using an unrelated screen name.)

The practitioner I am seeing at the clinic has referred to my current protocol as both a "Bartonella/Lyme" protocol and a "maintenance" protocol. However, I have been receiving some type of coverage for Bartonella since the beginning of treatment with rotations of Septra DS, Minocycline, Cipro and Rifabutin. I presume it is maintenance in the sense that I am now only receiving 1 week of medication per month.

I have never actually been seen by Dr. J, and have had a difficult time getting questions answered clearly or directly. When I have brought up these concerns in the past, they haven't been too concerned. They rarely explain things or go into the kind of detail I would like them to. However, I understand they have a lot of other patients and are very busy.

I was treated for Babesia for roughly 13-14 months, the most intense medication for the first 8 months of Babesia treatment.

To answer Hoagie: It is hard to say. I was always significantly reactive for the first cycle or two whenever my protocol was changed -- w/ better tolerance to medication and improvements in symptoms in-between.

Rikky1
Veteran Member


Date Joined Jun 2015
Total Posts : 2411
   Posted 10/6/2017 11:48 AM (GMT -6)   
fyi i see dr. j and am in month 7 of babesia focused protocol. the next phase (see him in a month) will probably see a switch to bartonella but same cycles.

so i wouldn't consider what you're doing a maintenance dose. i think Dr. J's definition of that is 2-3 days of meds a month to knock down whatever tries to rear its ugly head again.

you are phasing into a maintenance dose but it seems like you aren't ready for that given your return of symptoms. i would call them and strongly voice your opinion. i mean i get that they're trying to get your immune system to take on more of the work but if you can't function and whatever they're giving you isn't helping to knock the symptoms down enough you probably need to go back to the 2 weeks on/2 weeks of cycle.

sorry but i'm glad to hear you did 14 months of babs treatment Dr. J told me most of his patients clear it in 5 months but i was special cause its taking longer. i guess you're special too ;o)

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 26401
   Posted 10/6/2017 3:45 PM (GMT -6)   
"However, I have been receiving some type of coverage for Bartonella since the beginning of treatment with rotations of Septra DS, Minocycline, Cipro and Rifabutin."


okay - so you were treated with Cipro and Rifabutin - those are bartonella treatments...was that after you treated the Babesia, and before going to this maintenance protocol?

How much better do you feel now - regarding symptoms? Would you say you're close to symptom free...or?
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

Rikky1
Veteran Member


Date Joined Jun 2015
Total Posts : 2411
   Posted 10/7/2017 6:47 PM (GMT -6)   

yancync
Regular Member


Date Joined Nov 2015
Total Posts : 439
   Posted 10/8/2017 8:57 AM (GMT -6)   
That's frustrating. Here's our experience there.

DS is getting close to 2 years on oral pulse and if at any time he has started feeling worse in the weeks off we call in and they may tweak the protocol. Or if an appt is coming up soon, we discuss it there. At no time have we ever been told he's ready for maintenance or had it called maintenance when this is happening.

They tell us after a few cycles of feeling no different during on and off weeks (2 on/2 off) then we can try to move toward maintenance. There have bumps in the road with symptoms rising back up/changing/new ones and we moved back a few steps, often to tamp down one of the 4 he has (usually he is treating 3 at a time, occasionally 4 but usually 3). He is on his first cycle of 2 weeks on and 3 weeks off after being successful with no symptoms for a few cycles of 2 weeks on, 2 weeks off.

If you are still having symptoms, I would consider calling in and let them know what's going on rather than wait until the next appt.

Best wishes!
Parent of teen DS w/ CDC+ Lyme test Nov 2015, late stage Lyme + mycoplasma, bartonella, babesia. Currently treating with antibiotics/anti-malerials, multivitamin, magnesium, CBD oil.

Website I started: ParentsofLymeKids.com aka Lyme Disease 101 for Parents

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 26401
   Posted 10/8/2017 11:56 AM (GMT -6)   
Yancync - That's why I'm confused...maintenance when he's still symptomatic doesn't make sense.
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

DavidSharpe
New Member


Date Joined Mar 2016
Total Posts : 6
   Posted 10/8/2017 2:08 PM (GMT -6)   
Thanks for the replies everyone.

Rikky1-
Really appreciate your input. I think you are correct. Perhaps I am not ready for maintenance given how I am still relapsing with symptoms in the 3 weeks off medication (I only take 4 days of medication 1 week a month). The first week off is always the most difficult (possibly a Flagyl herx), and it usually takes me until the first thursday/friday off to start bouncing back.

I would understand if my case is more difficult to treat. I have had confirmed tick attachment w/ an enlarged lymph node 20 years ago, and have started to develop serious symptoms 11-12 years ago. I hope you do not have to treat for Babesia much longer. I really disliked Mepron/Malarone.

Girlie-
I was treated with Cipro and Rifabutin (Cipro coming first) midway through Babesia treatment --all before maintenance.

I am pretty symptom free while on medication (not counting side-effects) and would say I am now doing better overall than I was before treatment. I do not become the level of ill I would periodically before treatment, and have lost a number of symptoms for good. And as I have stated previously, I am more tolerant of medication. Prior to treatment, and before I was aware of my illness, I would become immensely ill after taking a simple course of antibiotics for unrelated issues. I hope this answers your question.

yancync-
Thank you for your insight. I have never not felt worse in the weeks off. However, sometimes I will have a few days I would consider symptom free during my off weeks. I have discussed these concerns during my scheduled appointments. It is nice to hear your son has been completely symptom free for a few cycles. That would be ideal.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 26401
   Posted 10/8/2017 2:33 PM (GMT -6)   
Are you sure they are side effects of the meds and not symptoms?
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

Lvg123
Regular Member


Date Joined May 2016
Total Posts : 69
   Posted 10/8/2017 2:43 PM (GMT -6)   
Hello David,

I see Dr. J too, well I see Kim. I would def call the nurse line and let them know you are still symptomatic and believe you still need 2 weeks of medication. If the nurse doesn't help I would try and make an appointment with a different nurse. I originally was seeing Rachael but she wasn't helping me so I had to make an appointment with Kim and she has been unbelievably good.
Not sure when I was infected with Lyme Disease, but I started to get very sick in June 2015 (6 months after giving birth). I progressively got worse and worse and could no longer do my job and was fired in March 2016. I went to many doctors and no-one could diagnose me. Finally I got an Igenex test and I was IGG was positive for Lyme (not IGM). I started treatment in December 2016.

DavidSharpe
New Member


Date Joined Mar 2016
Total Posts : 6
   Posted 10/9/2017 10:05 AM (GMT -6)   
Girlie-
Drowsiness and nausea for a few hrs after taking a dose.

Lvg123-
Thanks for your input. I will keep that in mind. Going to ask to go back on two weeks.

yancync
Regular Member


Date Joined Nov 2015
Total Posts : 439
   Posted 10/9/2017 11:50 AM (GMT -6)   
In re-reading this and your long history of infection, you may want to switch and see another practitioner at JC - none of the ones we've had would have considered dropping to just 1 week a month with what you're describing...they would have put and actually did put DS back on meds if he started feeling sick again - and it's common from what I understand. For DS moving toward maintenance, he is still on 2 weeks of med with 2 or 3 off. He still has high mycoplasma numbers though.
Parent of teen DS w/ CDC+ Lyme test Nov 2015, late stage Lyme + mycoplasma, bartonella, babesia. Currently treating with antibiotics/anti-malerials, multivitamin, magnesium, CBD oil.

Website I started: ParentsofLymeKids.com aka Lyme Disease 101 for Parents

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 26401
   Posted 10/9/2017 12:37 PM (GMT -6)   
DavidSharpe said...
Girlie-
Drowsiness and nausea for a few hrs after taking a dose.



Okay - that does sound like side effects.
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
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