What would YOU do? (re: continuing treatment...or not)

Rikky1 said...
>>NP from the J clinic called - she confirmed with Dr J that he had seen my labs and I was to do cycle 4 m/w/f as I did with cycle 3.

told you ;o)

i'm in the middle of a cycle and have one more cycle before seeing Dr. J in Dec. i think he's going to try me on a further maint protocol (meds 3x/month) and wean me off gabapentin and see how i do. i'm ready to stop with these darn meds to see if my body can recover on its own. it's not like i can't go back on them.

i've added DMSO to the mix which i'm sure is adding to my misery. if you don't think DMSO kills pathogens try a 1/2tsp orally and get back to me ;o)

I guess I’ll be doing something similar to the protocol you’re now on - maybe as soon as December - unless he extends my persister protocol past the 4th cycle.

Quin said...

Girlie said...
I had a good stretch of several days in a row (7 I think it was )never ever had that since symptoms started in 2013.

It’s ended though so I am wanting to do that one more round.

I've noticed this effect also. When borrelia is stressed, the bacteria become dormant and try to hide. Sometimes when I start a new round of antibiotics, at first the bacteria just become inactive and stop making me sick. I will feel really good for a few days, then the bacteria start dying, causing a Herxheimer reaction, and I feel sick again.

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These are the patterns we want to have: Break from abx and feel better....and hopefully the length of time that we feel better OFF the abx will lengthen...until we don't relapse.
For me.....I have not had those patterns...until this recent stretch of feeling good...it's a first for me..
I'm hoping it's not a 'fluke' and I have another stretch of feeling good after this next cycle.

I started Cycle 4.

Checked my kidney function a couple days ago and it was in range.

This may be the last cycle of Persister protocol - I have an appt in December.

So far so good! No crazy herx .... yet

sebreg said...
Fantastic Girlie! Fingers crossed for you!

Thank you.

At this point - my baseline has improved - of course it’s too early to say for sure.

I’m not waking in the morning with the shivers anymore - it would happen the moment I woke up.
It’s a strange nervous system symptom.

And most evenings the sweating episode that would come on for about an hour is very minor now.

No sore neck in the evenings.( I think this was improving prior to this protocol though.)

Head pressure is rarely bad - not flaring as often.

I can’t say with 100 % certainty that they are because of this protocol - maybe they would have happened anyway - from previous protocol plus time for body to heal.

However - since I have been on the Persister protocol since August - I think it’s most likely the reason.

Oh - and my a.m. waking anxiety/doom and gloom is almost non-existent.

Dahlias said...
Girlie, this is sounding so good! I understand your caution, but I'm very happy to hear of this progress.

thanks Dahlias. I am for the very first time feeling optimistic that i will beat this.

My husband commented that he hasn't found me crying in the bedroom...saying "If this is IT, I don't want to live like this ....I'd rather be dead" for many months now.

That sounds dramatic...but I just couldn't see this being my life....and being okay with it. The bad flares were bad enough that I couldn't go back to work...couldn't be reliable even making plans for an evening out...

It's been a long haul...and I kind of forget the person I used to be...I've sort of lost my identity...if that makes sense...hard to explain. Spent a lot of hours at home by myself.
Thank goodness for my understanding husband. Although it was difficult at times...as we did just about everything together. He lost his tennis partner, his camping partner, and his confidant - he's carried it all on his shoulders...and did what he could to not burden me.

I think we both need therapy....

Girlie said...

Scared to take them again....scared to NOT take them and lose the grounds I have made.

I could do the treatment without the Dap/Daraprim...I don't know for sure they are the reason for improvements...it could be the Rifabutin...but I don't know.

I'm thinking one more round...just one more...my kidneys can handle it...but then I change my mind...back and forth.

I'm not sure why you couldn't give your a body a break for a month or two, then try the Dapsone/Daraprim protocol again, wait maybe even longer. Some of these persister cell drugs are just so much more toxic than traditional antibiotics because of the strong half life. I know it sucks taking a break, due to everyone's life in a hurry and worry that sometimes you may be only treat with a LLMDs for so long, may be due to money, being out of state or other reasons. But if you feel your body is becoming very toxic, I'd take a break, at least from the strong half life antibiotics, maybe even give another protocol a try with persister cell antibiotics that have a lesser half life...

Also, be sure to drink lots of water Girlie, only thing I drink. One of the best, easiest simple cheapest detoxes for your body, liver and kidneys, but so many people fail taking advantage of this resource, probably due to being addicted to fructose, sugar, and just being addicted to flavored drinks. Nothing quite works as well as water.

I know there's tons of information out there that even herbal supplements can do no wrong, some say tea is the best detox around, you may change your mind after reading this article
https://www.bbc.com/news/stories-45971416

Baking soda and water drinks, once or twice every 1-3 weeks, really seem to help detox my body too...

Cycle your detox supplements, don't stay on them for too long either, as you see through the article up above, even green tea can build up in your system.

Post Edited (Charlie55) : 11/15/2018 12:38:17 AM (GMT-7)

oregonhay said...
This is the best news ever that you are feeling better Girlie!

Thank you! I am cautiously optimistic - afraid of jinxing it.

Well, Dr. J said two more cycles on the Persisters.

Just finished Week 1 - D and D plus Rifabutin, Ceftin.

So far ..... so good.

I just saw that another member (Xpeetzax) had a similar event that I had on Cycle 2. (from Rifabutin)

physedgirl09 said...
Keep it up girlie.... ur almost done! I’m having a hard time the past 2 days on the tindimax/diflucan. Awful

I have to say that I have skipped a Flagyl here and there in the past several months.

Hope the effects don’t last and you feel better soon!

spoke too soon.....woke up after a few hours - feeling lousy....

High temperature, high heart rate and head/body pain.


My heart rate has now normalized and i still have a temperature....but it's a low fever now...and still have the pain. (more than I usually have on a day-to-day basis.


If it's a herx...then hopefully I will feel somewhat improved in a few days....

Hope you're doing well, Mister Mike!

Girlie - Ive read this long post here and there the last couple months, NOT knowing what this persister protocal is. Some others seem to know it ......same Dr?

Is this Dr J's specific protocol or someone else's "invention" that he follows?

Is there a link/web site that explains this persister protocol, what in it.? Sounds interesting.

My Dr did abx in waves with breaks (flagyl then doxy ect),but nothing extra to coax the critters out if that what this is doing.

No there isn’t a website where Dr J explains it.