Dr.J maintenance protocol

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.

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.

"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?

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!

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.

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.

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.