Had my Dr. J follow up

Glad to hear the trip wasn't too bad.

And that sounds like a plan! wishing you good luck with the upcoming changes in the protocol. Ivermectin was effective for me. Never tried daraprim, but seems to be a good one for babesia.

sebreg,

what dose of ivermectin were u on and how many days a month?

ok so my protocol pulses meds mon wed fri 2 weeks on 2 weeks off.... id be adding in the ivermectin on only monday of week 3 doing 12mg... and i do this for 3 months... so once a month at 12 mg...

what is the purpose of this med? whats it for?

Are you adding in Daraprim?

And you’re staying on Mepron?

How long you been doing the Babs protocol?

You only do 3 days a week of Mepron?
Lucky you - I had to take it 5 days...

Hey girlie,

Sorry for the late response. I caught a cold so I’m sick! Ugh

Anyway, I been on babesia protocol since June. So after next month it’ll be 9 months total.
Yeah I only took malerone 3 days a week. The herxes I experienced happened at the end of week 1 after I took tindimax and diflucan. Man those kill me.

So next month is my last current protocol. The. In March I start the daraprim. I do this week 1 them week 2 I’m on the malerone again. She wants to ease me into this because she said she sees it a lot where people move to the next phase too soon and the babesia comes roaring back. So we shall see how all this pans out.

It's interesting to hear how different everyone's protocol is. DS, a teen, hasn't used a lot of the medications mentioned in this thread. Girlie, they will go back and treat issues that crop up, so as long as you're keeping track of symptoms between appointments and listing them/discussing them at the next appointment, you should be good. Babesia is one infection that most patients end up revisiting at some point in treatment - at least that's what they told us and what did happen with DS. It's definitely whack-a-mole with these infections.

I will say I've been impressed with triage the past few weeks which is sometimes a frustration expressed here. I had to call in on a serious issue and they definitely prioritized it, which was necessary and I really, really appreciated the quick and thorough follow up.

I’m not really sure what symptoms they feel are babesia. My symptoms include the dizzy/drunk feeling all the time, shakes/shivers, eye issues like blurred vision/floaters. I’m assuming they still feel like these are babesia symptoms. And the fact that I herx like crazy when I’m tindimax/diflucan. Makes me feel awful.
So who knows why everyone’s protocols are so different

Girlie, if my memory is correct, you were ready to revolt if they didn't switch you to bart. ;) They may have followed your wishes there. And it made sense given your experience. RM told me last week that sweating can be a sign of the nervous system healing, so maybe that's the case for you?

Physedgirl, good luck! I am switching to bart after a couple more rounds too.

physedgirl09 said...
I’m not really sure what symptoms they feel are babesia. My symptoms include the dizzy/drunk feeling all the time, shakes/shivers, eye issues like blurred vision/floaters. I’m assuming they still feel like these are babesia symptoms. And the fact that I herx like crazy when I’m tindimax/diflucan. Makes me feel awful.
So who knows why everyone’s protocols are so different

Have you improved a lot so far on the Babs treatment?

cappuccinocurls said...
Girlie - I swore babesia was my lingering coninfection and my DNA Connextions showed Bart. I also get some sweating (mostly hot and cold) buts it anxiety related and hormones.

Does Dr J look at adrenals, hormones, etc or only do the TB illnesses ?

Thank you - that is helpful information.
I do have ANS issues (POTS) so it could be causing my minor sweating and it’s likely that bart is causing it. I have suspected I’ve had a smouldering bart infection since childhood - after many cat bites and scratches...
Dr J does do a huge amount of blood work after the initial consult including Thyroid (TSH, FT3, FT4, RT3), DHEA, Testosterone...etc)


Sorry Physedgirl for the hijack!!!

Dahlias said...
Girlie, if my memory is correct, you were ready to revolt if they didn't switch you to bart. ;) They may have followed your wishes there. And it made sense given your experience. RM told me last week that sweating can be a sign of the nervous system healing, so maybe that's the case for you?

Physedgirl, good luck! I am switching to bart after a couple more rounds too.

Well when I saw Dr J I just listened to him and decided to trust him.
No revolt ! Lol

Yah - I think the minor sweating could be my ANS from Bart

as much as it makes me angry, im still gonna plug away at this...just wish i knew exactly what i was dealing with ... i guess maybe bart treatment we will see if i improve but i dunno when im starting that