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This has gotta be BART? ***Update- had my appt with Dr J

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Posted 8/8/2018 11:38 PM (GMT 0)
Fantastic! I'm so happy to hear you got the bart protocol! Please keep us posted with your progress.

I think it's good to hold off on the quinolones. Can always reevaulate down the line after you've exhausted all the other options. I've never been on clindamycin or pyramethanine, been on pretty much everything else under the sun.

Is this your first time taking dapsone? that was a good drug for me, had to start it very slow though.
Posted 8/9/2018 12:49 AM (GMT 0)
Awesome news good luck on your new protocol. Your healing is right around the corner!
Posted 8/9/2018 1:06 AM (GMT 0)
darn, you were in DC yesterday seeing Dr J. I was in DC yesterday seeing Dr M! We could have met up.

Well, im also now starting rifabutin so maybe the healing Gods were aligned for us
Posted 8/9/2018 1:38 AM (GMT 0)

Aerose91 said...
darn, you were in DC yesterday seeing Dr J. I was in DC yesterday seeing Dr M! We could have met up.

Well, im also now starting rifabutin so maybe the healing Gods were aligned for us

Aw missed you.

But I saw him today - not yesterday
Posted 8/9/2018 1:44 AM (GMT 0)

Girlie said...
Still waiting for luggage - 6:30 pm !!


My appt went well - I am so glad I persevered to see him.
He knows his stuff and I am now on a bart/Persister protocol...

Thinks my Babesia treatment is enough - he DID take into consideration that I self treated Babs for 7 months in 2017 - even tho it was half dose compared to what he prescribes.
He felt my abdomen and said liver and spleen are good - no swelling.


I will be on Pyramethanine, dapsone, Rifabutin , alinia, Clindamycin, mino, Ceftin

Three weeks on and one week off (but each week is different )

Sounds like a no nonsense protocol. I look forward to hearing about your progress.

When are you starting the new protocol?
Posted 8/9/2018 2:08 AM (GMT 0)

yancync said...
Glad you made it to DC even without luggage and 'fessed up Girlie! I remember them saying they like to treat babs first and then bart unless bart is really affecting someone a lot. I find they are great at listening/trying to get patients some relief. Boy, the bart skin lines popped right up when DS started bart treatment there - it was wild.

Anyway, best wishes - hope you keep progressing!

Well... I never actually ‘fessed up’- lol
He just thought I was ready for bart treatment now
Posted 8/9/2018 2:09 AM (GMT 0)

Alxander said...
Sending you positive vibes girlie.

Thanks Alxander - appreciate the well wishes
Posted 8/9/2018 2:10 AM (GMT 0)

sebreg said...
Safe travels!! Hope the appointment goes well!!

Thanks - it did!
Posted 8/9/2018 2:14 AM (GMT 0)

sebreg said...
Fantastic! I'm so happy to hear you got the bart protocol! Please keep us posted with your progress.

I think it's good to hold off on the quinolones. Can always reevaulate down the line after you've exhausted all the other options. I've never been on clindamycin or pyramethanine, been on pretty much everything else under the sun.

Is this your first time taking dapsone? that was a good drug for me, had to start it very slow though.

Yes first time on it as well as the Pyramethamine (so?) Clindamycin and alinia
Posted 8/9/2018 2:14 AM (GMT 0)

sandyfeet said...
So happy to hear you're on to bart treatment Girlie. I hope things start moving forward for you now.


Thanks - I hope so!
Posted 8/9/2018 2:15 AM (GMT 0)

Donjr said...
Awesome news good luck on your new protocol. Your healing is right around the corner!

I hope so - I’m getting tired of this
Posted 8/9/2018 2:18 AM (GMT 0)

Hoagie said...

Girlie said...
Still waiting for luggage - 6:30 pm !!


My appt went well - I am so glad I persevered to see him.
He knows his stuff and I am now on a bart/Persister protocol...

Thinks my Babesia treatment is enough - he DID take into consideration that I self treated Babs for 7 months in 2017 - even tho it was half dose compared to what he prescribes.
He felt my abdomen and said liver and spleen are good - no swelling.


I will be on Pyramethanine, dapsone, Rifabutin , alinia, Clindamycin, mino, Ceftin

Three weeks on and one week off (but each week is different )

Sounds like a no nonsense protocol. I look forward to hearing about your progress.

When are you starting the new protocol?

If I get my meds by Monday I’ll start on Wednesday - I doubt if I will get them before Monday - I have to get them faxed to the Canadian pharmacy and have them send them to me.
Posted 8/9/2018 2:21 AM (GMT 0)
Just want to clarify - all those meds are not taken in the same week. And I’m only taking the meds 13 days a month
Posted 8/10/2018 2:35 PM (GMT 0)

Girlie said...
Oh - he asked me about taking fluoroquinolones or was I “dead set against them”

I said I was pretty much (dead-set against them)

With so many other options out there thats crazy to hear Docs would still RX that stuff for confections.
Posted 8/10/2018 4:07 PM (GMT 0)

Kirky98 said...

Girlie said...
Oh - he asked me about taking fluoroquinolones or was I “dead set against them”

I said I was pretty much (dead-set against them)

With so many other options out there thats crazy to hear Docs would still RX that stuff for confections.

I think it’s because they work the best for bart - and for some people it’s worth the risk

These infections can also cause devastating symptoms.

I know many people who have taken them for other ailments with no issues - but I’m just not willing - not at this point anyway.

Bactrim is another antibiotic that works well for all three B’s - it has the SJS risk which is also scary.

It’s difficult sometimes deciding what to do.
Posted 8/10/2018 7:35 PM (GMT 0)
Girlie, I'm so glad you got your appointment and it went well! Hope this new protocol gets you turned around.
Posted 8/11/2018 12:07 AM (GMT 0)

Dahlias said...
Girlie, I'm so glad you got your appointment and it went well! Hope this new protocol gets you turned around.

Thanks Dahlias.

I’m a bit apprehensive about the Dapsone and Pyramethamine/leucovorin - but at least it’s only for 5 days a month - I can’t get folic acid testing up here - so that concerns me.

Clindamycin is also new to me... also Alinia...
Posted 8/11/2018 1:39 PM (GMT 0)

Girlie said...
I will be on Pyramethanine, dapsone, Rifabutin , alinia, Clindamycin, mino, Ceftin

Three weeks on and one week off (but each week is different )

Wow - that is an interesting protocol. Very curious how you'll do on it. Does he think you have Lyme, or it is mainly Bart?
Posted 8/11/2018 1:47 PM (GMT 0)
Clindamycin has been good for me. This is the first I've heard of them prescribing Alinia -- seems better than the alternatives.

Keep us updated!
Posted 8/11/2018 5:06 PM (GMT 0)

Mister Mike said...

Girlie said...
I will be on Pyramethanine, dapsone, Rifabutin , alinia, Clindamycin, mino, Ceftin

Three weeks on and one week off (but each week is different )

Wow - that is an interesting protocol. Very curious how you'll do on it. Does he think you have Lyme, or it is mainly Bart?

Sitting here waiting for the flight to leave...

He thinks I’m done with Babesia now and now working on Bart (and persisters I think)
He didn’t really talk about Lyme - I think because when Babesia and Bart are treated - lyme is covered..except for persisters.
Posted 8/11/2018 5:10 PM (GMT 0)

Dahlias said...
Clindamycin has been good for me. This is the first I've heard of them prescribing Alinia -- seems better than the alternatives.

Keep us updated!

Oh good to know that Clindamycin has helped you.

I have seen a couple people who see Dr J and they’ve been on Alinia, too.

He said it’s for parasites and I asked if he meant microscopic or actual worms etc - ie will I see “something” in the toilet. He said “both”

He has me taking Alinia by itself one week because he wants to know if there’s a response.
Posted 8/11/2018 6:19 PM (GMT 0)

Girlie said...
Sitting here waiting for the flight to leave...

He thinks I’m done with Babesia now and now working on Bart (and persisters I think)
He didn’t really talk about Lyme - I think because when Babesia and Bart are treated - lyme is covered..except for persisters.

Awesome news. Looking forward to seeing how you do. I'm about to go on Rifampin and Plaquenil to cover Q in case it rears its ugly head again now I'm done with Alinia. As I've long suspected Bart I look forward to the Rifampin. I may ask my doc for some of the meds you're on...

What's the difference between Rifabutin and Rifampin?

What in your protocol deals with persisters?
Posted 8/11/2018 8:24 PM (GMT 0)

Mister Mike said...

Girlie said...
Sitting here waiting for the flight to leave...

He thinks I’m done with Babesia now and now working on Bart (and persisters I think)
He didn’t really talk about Lyme - I think because when Babesia and Bart are treated - lyme is covered..except for persisters.

Awesome news. Looking forward to seeing how you do. I'm about to go on Rifampin and Plaquenil to cover Q in case it rears its ugly head again now I'm done with Alinia. As I've long suspected Bart I look forward to the Rifampin. I may ask my doc for some of the meds you're on...

What's the difference between Rifabutin and Rifampin?

What in your protocol deals with persisters?

Rifabutin is supposed to be more effective than Rifampin. I’ve only taken Rifampin thus far. I’m not sure why the llmd’s prescribe Rifampin if Rifabutin is better. I asked dr J if Rifabutin was harder on the body and he said “no”

I believe the dapsone and the pyramethamine (I think I keep changing the spelling of that one) are for the persisters.
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