Appointment with Dr. J...and continuing on Persister protocol. :(

It was a phone appt. and half hour long.

I recorded it and have listened to it a few times.

So, he wants me to do two more cycles of the persister protocol...and go back to the 5 day dosing on the week I take Dapsone, Daraprim...etc. (ugh)
(I had done the 5 day dosing for two cycles and then had the really BAD reaction so went to 3 day dosing for cycles 3 and 4)

He thinks that it may have been the Rifabutin that caused the bad reaction. And thinks it could have been hitting Mycoplasma (along with the minocycline) He also thinks it was a 'one-off' and I most likely won't have that horrible reaction that I had - when I almost went to the ER.
(We've never discussed mycoplasma before...)

I told him that the last two cycles, I have had more good days on the two 'off' weeks (when I just take Alinia) and he said that is a good sign.


After these two cycles of Persisters...I am going to a step-down protocol....for a couple months, and then I go back to DC to see him...and reassess.

The 'step-down' protocol was sent to the portal to print off. I glanced at it - and if you've ever seen Dr. J's handwriting on the protocol sheet....well...you know what I'm talking about. .... I'm going to have to study it...lol.
Thank goodness he uses a different highlighter color for each med in the protocol.

He is so very knowledgeable - I feel fortunate to have him as my LLMD.

Re: head pressure/headaches from die-off/toxins. He said it's the Dura that is getting affected....causing the pressure in the head.

He also talked about the body needing to heal. He compared it to having a bad arm infection - swollen and sore...you take the antibiotics...and then it heals.
It won't heal until the antibiotics have killed off the bacteria.

Same with lyme...if you've still got a lot of infection...you're not going to feel much better until that infection is beaten down and your body starts to heal.


He emphasized biofilms. He thinks they are a big issue with people who don't heal. Didn't talk much about the cyst form...
He insists I still take the Xylitol and lactoferrin for these next two cycles.

How are your symptoms overall? The good thing is that he has a plan. Hopefully the next 2 cycles will prove helpful! Did you flare when you took your last cycle?

Aerose91 said...
What is persister referring to?

You know I'm not sure anymore. We used to talk about spirochetes turning into cysts and needing a cyst buster.....and then biofilms were discovered......that form around the cysts.

I've not asked Dr. J what he considers persisters. Maybe it's just anything and everything that is stubborn to treat...

Charlie55 said...
Wish you best of luck and will be praying Girlie, you're with one of the best LLMD, if not the best!

Never give up!!!

And don't forget to detox! Baking soda water drinks always seem to help me flush out the toxins... Dapsone is a strong drug due to it's long half life...

I find that biofilm busters wear off in a couple of weeks, might be good to rotate Lactoferrin/Xylitol with Stevia or others... Oregano oil...

I do detox. ....promise...

Daraprim has even a longer half-life of 96 hours !!!
Re: rotating the biofilm busters. I don't want to mess with Dr. J's system. So, I am sticking to the lactoferrin/xylitol combo....for now anyway.

Wow, lot to think about. I'm sorry you're facing that full persister cycle again. It makes sense that it would be easier this time, though, now that you've knocked back the load of whatever this is hitting. Where are you on the protocol now?

That's good that you flared at least, I'd take that as a sign that the meds are still effective. And fortunately you just have 2 more cycles to go so it won't be endless. I know it's no fun going through this stuff, but hopefully it keeps bumping up your baseline to a higher and higher level!

Sorry you have to continue on these meds you dont like girlie but hopefully it will get you further. I havent been put on these meds yet.. my appt isnt until January 25th. Im nervous and anxious about this appointment... im wondering if i will be put on these meds... so we will see... wishing you healing in the next few cycles.

sebreg said...
That's good that you flared at least, I'd take that as a sign that the meds are still effective. And fortunately you just have 2 more cycles to go so it won't be endless. I know it's no fun going through this stuff, but hopefully it keeps bumping up your baseline to a higher and higher level!

Yah, I guess. But, in the back of my mind I'm always wondering how many of the symptoms are side effects...as you know when you look them up...they're numerous on all of the antibiotics we take....

i and hoping and praying that i will have more improvement with these next two cycles.

physedgirl09 said...
Sorry you have to continue on these meds you dont like girlie but hopefully it will get you further. I havent been put on these meds yet.. my appt isnt until January 25th. Im nervous and anxious about this appointment... im wondering if i will be put on these meds... so we will see... wishing you healing in the next few cycles.

Not all patients get these persister meds prescribed.

You're quite functional through the treatments, right? Still able to work?

You may not need them?
Remind me - where you're at with the protocols. ie have you done several rounds of the Babesia meds - 5 day dosing 'kill zone'?

Girlie said...

"What doesnt kill the bacteria makes it weaker." OR tougher?

Trust that your body is smarter and will win out! There are tons of testimonies to that.

Girlie said...

physedgirl09 said...
Sorry you have to continue on these meds you dont like girlie but hopefully it will get you further. I havent been put on these meds yet.. my appt isnt until January 25th. Im nervous and anxious about this appointment... im wondering if i will be put on these meds... so we will see... wishing you healing in the next few cycles.

Not all patients get these persister meds prescribed.

You're quite functional through the treatments, right? Still able to work?

You may not need them?
Remind me - where you're at with the protocols. ie have you done several rounds of the Babesia meds - 5 day dosing 'kill zone'?

Hey Girlie,

So ive been on Babesia protocol since june...pulsing 2 weeks on and 2 weeks off... so im coming up on cycle 6. ive never taken meds 5 days straight yet... just mon wed fri and week 1 im mon wed thu fri. so who knows if i will be put on what ur on... ive been very functional... been working the entire time ive been sick.... and i completely changed my diet and i actually feel better these past 6 days... i react terribly to sugar.... we shall see what happens

Physedgirl - I’m thinking you will be on the 5 day dosing of Mepron next with xylitol and lactoferrin.
(You’re not already taking the X and L yet, right?)

It’s generally the next step before doing the Persister protocol...but of course it could be different for you.

It’s interesting that DrJ thought that Rifabutin was a big player in my bad reaction/ER worthy “herx” a couple months ago.

Girlie said...

Yah, I guess. But, in the back of my mind I'm always wondering how many of the symptoms are side effects...as you know when you look them up...they're numerous on all of the antibiotics we take.....

I have actually wondered the opposite. How many of the “side effects” of some abx are actually herx symptoms from the abx killing these infections even in people who are unaware of having any TBD’s.