For those who treated with Dr. J, what do you think is next

I am doing about 3 months of a babesia focused protocol. Im wondering what will likely be next for me? WIll it be babesia, lyme or bart? What does his bart protocol look like?

The protocols can vary somewhat from patient to patient.

My Bart/Persisters was a difficult one to tolerate for me,

That was when I took dapsone.
Week 1 of the 4 weeks was BRUTAL for me.

I believe it did - but not sure because there were several abx with it.
That protocol was the turning point for me though.

Bro - I typed it all out and accidentally deleted it.
Going out with a friend so I will post it later today/evening

Here it is:

Week 1
Sun-Sat: xylitol and lactoferrin
Mon-Fri:
Dapsone - 50mg x 1
Pyramethamine - 50mg x 1
Leucovorin - 10 mg x 1
Enula - 10 drops twice daily
Cryptolepis - 40 drops twice daily
M/W/F:
Ceftin - 500 mg x twice daily
Rifabutin -150 mg x twice daily
Th/F:
Tinidazole - 500 mg x 2 daily
Diflucan - 200 mg x 2 daily

Week 2
M/W/F:
Mino - 100 mg x 2 daily
Rifabutin - 150 mg x 2 daily
Clindamycin 300 mg x2 daily

Week 3
Alinia - 500 mg x 2 daily for 5 days straight
Week 4 OFF

“Wow! That looks terrible to be honest lol.

How long did you stick to that protocol?”

It was tough. It was for 6 months.
But after the first month/cycle Dr J changed the Dapsone to M/W/ F
(Instead of the 5 days )

This was the protocol that I almost went to hospital emergency at the end of week 1 on the first cycle.
I had a very high fever and my arms were jerking and my head was sore to touch.
My husband was so worried that he took the next day off from work.
He had a camera on me when I was alone in the bedroom trying to sleep. (He was that concerned!)
So dr J changed it to M/W/F

I believe I also postponed the week 2 abx for a week.. when I was feeling better

Lymie24 said...
That's crazy! Did you do the whole six months? Six months seems along time to take that aggressive of a protocol. I tried a different, but similarly, aggressive protocol about a year ago from my previous LLMD. I could only handle it for a month. I tried Horowitz's double dapsone and also could only handle that for a month. That protocol did send me to the hospital.

It sucks that it seems for some people the only progress is made when it feels like you're killing yourself. That was how my experience was with Disulfiram as well.

At first Dr J said to make an appt 4months out, which I did.
Then at that appt - he said he’d like me to do two more months.
I did herx - but never again like the first one.

After the 6 months - I was put on maintenance and have continued that since then.

Now I am stretching my weeks off. Without checking the calendar - I think it’s been 5 weeks now - since the last cycle.
(Maintenance schedule was one week on and three weeks off. ) So feeling pretty good at 5 weeks.

Lymie24 said...
It sucks that it seems for some people the only progress is made when it feels like you're killing yourself. That was how my experience was with Disulfiram as well.

This has literally been my general Lyme//Bart experience as well. And yes, Disulfiram is a great example of this. You can't win really. Have to put yourself on the verge of death to make progress, seems like.

The low and slow approach doesn't seem to work for some people like you and me. Not to mention blood work indicating our that organs (ie. liver) are hanging on by a thread during helpful treatments.

Quite frustrating to be honest.

Girlie said...
It was worth it! Believe me - it was really short term pain for long term gain!

I have my life back!

I know longer have to worry when I make plans. I used to fret about how I might be feeling … and should I go.
Plus - I’d have to bring my medications if I was going to be gone during treatment weeks.

Respectfully, I must disagree. It's not realistic to say that enduring short-term pain leads to Lyme Disease remission. I've met people in the Lyme Disease community who have gone through even more intensive and longer procedures than the one you outlined above and still haven't recovered.
By your reasoning they simply haven't endured short term pain?

“ Respectfully, I must disagree. It's not realistic to say that enduring short-term pain leads to Lyme Disease remission. I've met people in the Lyme Disease community who have gone through even more intensive and longer procedures than the one you outlined above and still haven't recovered.
By your reasoning they simply haven't endured short term pain?”

I never said they haven’t endured short term pain!

I said it was worth it for me!

It worked FOR ME

Girlie said...
itc1225: “ think when she mentioned short term pain that could mean 2 years of treatment or even longer“

My short term pain was just for the 6 months I was on the Persisters/Bart protocols.

And it was usually bad pain for a week or less each month - the other weeks each cycle the pain slowly lessened as time went on

How long was your total treatment at JSC? And did you experience pain during babs treatment? Pain is a really broad word so I find it applying to many different symptoms with Lyme + Co

Girlie said...

ltc1225 said...

Girlie said...
itc1225: “ think when she mentioned short term pain that could mean 2 years of treatment or even longer“

My short term pain was just for the 6 months I was on the Persisters/Bart protocols.

And it was usually bad pain for a week or less each month - the other weeks each cycle the pain slowly lessened as time went on

How long was your total treatment at JSC? And did you experience pain during babs treatment? Pain is a really broad word so I find it applying to many different symptoms with Lyme + Co

/////////////////////////////////.
Treatment was approximately a year long (that covered Babesia, Bartonella/Persisters (and lyme of course)

Then maintenance since then.
I have been lengthening the time “off” between maintenance meds.
(It started with one week on and 3 weeks off)
The week on I take abx 4 days a week.
Without checking the calendar - I think I’ve been “off” going on 6 weeks now since my last cycle.
Feeling pretty good, actually.
Hardly thought about lyme on our vacay to Hawaii.

That sounds like a pretty good timeline especially when comparing it to other patients at JSC on oral treatment. Dr. J told me it can take a while longer than that for many and I’ve talked to a lot who had to treat over a year, even beyond 2 years or 3. I’m on IV with Dr. J so it takes longer. But that’s really awesome that you’re at that point on maintenance and it took a little over a year to get there, happy for you

A lady in my city also goes to the J clinic.
After several months of treatment and losing a lot of symptoms - she went to maintenance and she relapsed.
She’s starting over again.
She was devastated!