Had a set-back. Your opinions appreciated. ***UPDATE***

As some of you know I started at the J Clinic in February.

Did Babesia treatment until my last appt. in August....where I was switched to the persister protocol.

My first cycle (each cycle is 4 weeks) went quite well. But on week 1 (which is the Daraprim, Dapsone plus a few others) my Daraprim didn't arrive until Wednesday...so I only did two days (Th/F) of Dararprim but did take Dapsone for the 5 days (M thru F)
Also took Ceftin and Rifabutin on M/W/F

Both weeks 1 and 2 were pretty rough symptoms wise....but I was functional for the most part.
Then finished the last two weeks by taking Alinia for 5 days...and felt pretty good at that point.

Was feeling optimistic with this protocol.


So last week I started second cycle. I took all the meds M through F. (Daraprim/Dapsone/Rifabutin/Ceftin) Friday - late evening - my hands started to shake...and then it progressed...to more than shaking...like jerking...almost seizure-like. and I had full body pain. I decided to go to bed and see if I could sleep it off.
Could not sleep. Got up after a couple of hours...and checked my pulse - it was racing over 105 bpm and my temperature was 102 F. Bad head pressure and body pain....and nausea.

At about 4 a.m. I woke my husband in tears...because I didn't know what to do. He had me write down my medications so that if I went to the E.R. he could tell them what I was on.

He called in sick for work. (Then I KNEW he was worried) My heart was still racing. He convinced me to have a warm epsom salt bath...so I did. my heart rate wasn't quite as high by then.
I went to bed and managed to get a couple hours of sleep.
Woke up and the shaking/jerking had stopped...but still high temperature and body pain, including head pressure.

So, now it's Wednesday...and I'm not fully recovered.

I was supposed to take Week 2 meds (not the persisters) on M/T/ and today....but I just couldn't risk it.
Called the J clinic yesterday to tell them what happened and get advice on this week's meds.
Maybe I will take them late this week.

I've gotten slowly better....but here it is Wednesday and I'm still not back to baseline.

Darparim half life is 96 hours
Dapsone half life is 10-50 hours.
Rifabutin half life is 45 hours.
I'm thinking they could still be killing 5 days later?

I just don't want to mistake a bad side effect for a herx. If it's not a herx...I definitely don't want to repeat this.

I'm wondering if it's the daraprim...as the first cycle I only did 3 days of it...and this time it was 5.



Sorry for being so wordy...I wanted to try and give the full picture of what's gone on.


Your thoughts?

hi girlie

my opinion is the stuff is getting into your brain...idk if its a herx, or a flare...i noticed on Sp's protocol, which is all drugs that cross BBB, i would, at different times have crazy high blood pressure, pots, resting heart rate into 130s, massive chills, dry mouth, having to pee alot....i believe this was all caused by brain inflammation, or more specifically cns, vagus nerve irritation...i got off everything for a couple weeks and it resolved, though heart rate is still too high

i think the drugs, in killing, irritate the vagus nerve, which is important in sending signals to lower heart rate, digestive stuff etc... to me, a herx is feel bad, and then feel better...i didnt find that mine was that...it was as if i has a slew of new symptoms, all caused by treatment...Sp calls it "blebbing" when immune system goes into overdrive attacking microbial dandruff, in addition to surrounding brain...the autoimmune nature of the disease...kinda like when you get the flu and temp goes up as immune system mounts its attack...just a theory, but i think there is some truth to it

id obviously see what dr j says, but i think inflammation is going on...when i got my worse brain pressure, i would get nausea too...kinda head based, like car sick...and i would go from sweating to shaking chills....yes it can be bart/babs, but these things are controlled by areas of the brain, that have been affected by treatment in my opinion...if it was me, i would wait til you saw improvement til you start again...you cant kill this stuff anyways, do why kill yourself...

if you look at hansa center, they focus just on various detox methods (as well as homeopathics)...i think up detox...maybe curcumin?

xpeetzax said...
Girlie, so sorry you are going through this... yeah I really am not sure whether or not it is a herx or side effect especially if you have seizure-like symptoms...but maybe try lowering your dosage of the new meds?

If it indeed is a herx, then it's probably a good thing? I think I remember Dr. H saying that people who went on his new dapsone protocol would herx really bad initially then get drastically better. Hope that is the case with you!

Hang in there! You have brought hope to many of us here and I know you'll get through it!

Thanks - I just don’t know at this point.

dbwilco said...
hi girlie

my opinion is the stuff is getting into your brain...idk if its a herx, or a flare...i noticed on Sp's protocol, which is all drugs that cross BBB, i would, at different times have crazy high blood pressure, pots, resting heart rate into 130s, massive chills, dry mouth, having to pee alot....i believe this was all caused by brain inflammation, or more specifically cns, vagus nerve irritation...i got off everything for a couple weeks and it resolved, though heart rate is still too high

i think the drugs, in killing, irritate the vagus nerve, which is important in sending signals to lower heart rate, digestive stuff etc... to me, a herx is feel bad, and then feel better...i didnt find that mine was that...it was as if i has a slew of new symptoms, all caused by treatment...Sp calls it "blebbing" when immune system goes into overdrive attacking microbial dandruff, in addition to surrounding brain...the autoimmune nature of the disease...kinda like when you get the flu and temp goes up as immune system mounts its attack...just a theory, but i think there is some truth to it

id obviously see what dr j says, but i think inflammation is going on...when i got my worse brain pressure, i would get nausea too...kinda head based, like car sick...and i would go from sweating to shaking chills....yes it can be bart/babs, but these things are controlled by areas of the brain, that have been affected by treatment in my opinion...if it was me, i would wait til you saw improvement til you start again...you cant kill this stuff anyways, do why kill yourself...

if you look at hansa center, they focus just on various detox methods (as well as homeopathics)...i think up detox...maybe curcumin?

I am detoxing - just did my exercises/weights/cardio and following up with an Epson bath.

I’m taking both Jernigan’s Neuro Antitox CNS/PNS plus Pinella/burbur, ACT charcoal , curcumin... etc

oregonhay said...
I pray that this was the Herx to end all Herx and that the hell you went through was the final victory in your long journey and everything is coming to an end. It could only be

remember half lives are generally 4x or 5.5 (depending on which science field) of the time period to fully get out of your system

I hope you’re right! But I think the bart has a few more punches left.

Yah - these drugs will be in me for awhile....

Girlie, I’m sending you good healing vibes,
I’ll be positive and believe you are experiencing a herx and that you are making progress.

Stay strong, you’re an angel to us all.
Let us know how things go.

sebreg said...
It's always hard to say for sure, but I'd guess it was a massive herx. I've had quite a few of those symptoms, especially when herxes went into the red zone. Taking the break is good I think, at least until you recover baseline (then could consider restarting base meds). In the meanwhile may want to contact the doctor (I know this can be a challenge with Dr J). The thing is, herxing to that level can be a bit risky as I'm sure you know. I'm just guessing, but given daraprim's long half-life plus the fact you only took partial dose the first go-around, well, it makes sense that this is why the recovery back to baseline is taking a while since this is the first time you took the full-dosing of that med, and maybe it crossed some threshold beyond what your body was able to handle and triggered a massive response. It might be that daraprim is the strongest of the lot for your underlying infection (and probably further synergized by the other meds).

Have you ever taken any antihistamines? that could be something to ask about, dbwilco's comment is a little along those lines. There might be a chance that a combo of antihistamines could help control the immune response to all the toxins and pathogen debris that is taking place, and if that's the case it could help mitigate the level of herxing. Just a thought.

I hope you feel better soon, keep hanging in there!

Edit: this is kind of a neat tool for roughly calculating how long a med will stay in your system based on half-life and dose taken www.drugsdb.com/resources/drug-half-life-calculator/

Yup - no call back from the J clinic - but I did know that prior to going there.
Hopefully I will get guidance from someone tomorrow.

I tried anti histamines early on and didn’t feel any difference but this is another level so maybe?

Thank you for the link - I’ll take a look at it.

I’ve been thinking it’s daraprim or dapsone - or combo - thinking that Rifabutin is close to the Rifampin that I’ve taken before and tolerated well BUT maybe I’m underestimating it.

Prob a combo of all three.

I’m supposed to take 3 days of Clindamycin, Rifabutin and Ceftin this week.

Maybe tomorrow I can start that.

Girlie,

So sorry you had this happen.

Hang in there and believe that you will get past this.

You and Dr J clinic will figure it out.

Remember to write everything down that happened before, during and as this continues.

There could be a clue somewhere that may be of help.

Take care and praying for your healing.

Girlie,

I'm so sorry. That sounds awful scary. You mentioned a fever. Have you been around anyone with the flu or other contagious illness? If not, then it was probably a serious herx. Praying you get better soon and get answers from the clinic.

I dont know if it was mentioned but 2 things ...when i took bactrim it drove bart further into nerves ...thus the shakes. ..but one thing dap does similarly is block folate....and a lot of cell processes are dependent on that ...I had to take loads via iv and paba to restore the lysing anemia that was the sulfa wake. ..

Anecdotally a friend on dap was doing ok the few months in had a weird allergic life threatening reaction ....for me bees were safer

bluelyme said...
I dont know if it was mentioned but 2 things ...when i took bactrim it drove bart further into nerves ...thus the shakes. ..but one thing dap does similarly is block folate....and a lot of cell processes are dependent on that ...I had to take loads via iv and paba to restore the lysing anemia that was the sulfa wake. ..

Anecdotally a friend on dap was doing ok the few months in had a weird allergic life threatening reaction ....for me bees were safer

Thanks blue! You know I had thought it was just daraprim that you had to take folic acid with (antagonist) - so maybe the 10 mg per day I was taking wasn’t enough.

I’m thinking that’s it for me. I did do two of the three cycles -


I just discussed with hubby and he said I was white as a ghost when I had the reaction.
He’s never seen me like that before and he was really worried.
He just said “enough of that sh-t”.

Girlie, how terribly scary. I'm so sorry you went through that but glad you're safe.

You're thinking herx now? I don't take any of their protocols as given -- I always take it slower and lighter. I feel like they're like a bomb to the system as written.

I know Dr. J is the top expert, but next time you might want to consider seeing R. I've gotten responses same-day since switching to her.

Will you call again today if they don't call back?

Girlie, try some alka-selza gold next time (and I hope there isn't a next time).

later.