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

Girlie said...

Hoagie said...
Sry I'm late to the discussion. I have not read through all the responses, so someone else probably mentioned what I'm going to say...

Sounds to me like you had a break through. My last llmd described it as chipping away with various protocols. Then all of the sudden, bam! All hell breaks loose as you've broken through as barrier.

Stick with it Girlie! You got this.

I don't know Hoagie. It was very intense...not like any other herxes I've had.

Also had my 'safety labs' done a couple days ago...and my kidney function tests aren't good again.
and my WBC count went down to 2.9.

If I knew it was a herx...I would try it again...maybe instead of 5 days...do 3 days...but if I've developed some sensitivity to it...I don't want to chance it....

I do want to live....

Sry to hear that Girlie.

Sorry if you already addressed this, but were you able to contact Dr J's office about it?

Hoagie said...

Girlie said...

Hoagie said...
Sry I'm late to the discussion. I have not read through all the responses, so someone else probably mentioned what I'm going to say...

Sounds to me like you had a break through. My last llmd described it as chipping away with various protocols. Then all of the sudden, bam! All hell breaks loose as you've broken through as barrier.

Stick with it Girlie! You got this.

I don't know Hoagie. It was very intense...not like any other herxes I've had.

Also had my 'safety labs' done a couple days ago...and my kidney function tests aren't good again.
and my WBC count went down to 2.9.

If I knew it was a herx...I would try it again...maybe instead of 5 days...do 3 days...but if I've developed some sensitivity to it...I don't want to chance it....

I do want to live....

Sry to hear that Girlie.

Sorry if you already addressed this, but were you able to contact Dr J's office about it?

So yesterday I called again and waited - several hours later I decided to go get a few groceries as I was feeling alright - wrote down a couple questions for my husband in case they called back.

A NP did call and told me to take the week two meds (not dapsone or daraprim) on Monday. (Even though that is week 3)

And also to take the Alinia with them (instead of doing Alinia alone the following week)

I think they’re wanting me to take them together on week 3 so that I still have the fourth week off of all meds.

But she wasn’t clear about if I should take dapsone and daraprim again - cycle 2 (week 1) or just permanently stop those two.

Soooo - I need to call again on Monday.

Oh definitely, fer sure these meds have some scary side effects that are sometimes indistinguishable from Herx.

Certain anti-malarials can cause psychosis..it's hard to know whether it is a prolonged, delayed, multi-layered Herxheimer reaction sometimes, or neurologically involved because of the critical BBB effects, or if these drugs (I think I've read that people thought Minocycline used to cause "hysteria" in women or something, before anyway... they now may? understand that this was just infectious debris stubbornly working its way out?). At least that's how I'm beginning to understand it now.

I got pretty spaced out with Minocycline and Metronidazole, to where I abruptly stopped all treatment at that point. (!) Like my thoughts legit scared me, like almost psychopathic level...

But it's hard to know or separate the symptom from sickness, from Herx to detox, or from side effect that is a clear sign to stop or switch meds, or to continue slowly, or at lower dose, to step up detox, etc.

I hope you find relief, and you know yourself best, maybe a new elevated baseline of health after this more intense treatment perhaps!

Post Edited (borrelioburgdorferii) : 10/3/2018 1:17:24 PM (GMT-6)

Hey Girlie, it sounds like you have a well-tempered approach ( by going 3 day with the DAP instead of 5...) sounds good. Glad you were able to get back to baseline.

Keep us posted.

borrelioburgdorferii said...
Hey Girlie, it sounds like you have a well-tempered approach ( by going 3 day with the DAP instead of 5...) sounds good. Glad you were able to get back to baseline.

Keep us posted.

Thanks - Im still waiting for the call back to see what dr J says.

Hi Girlie!-

I am happy to hear that you are back to baseline again! I hate when symptoms get really bad and trying to figure out what is going on.

I hope that the doctor can figure out what is going on with your kidneys.

Sending you many ((Hugs))

I took Ayurvedic herbs for kidneys. Really helped

Somebody said...


Neurological side effects of oral dapsone include ocular adverse effects, such as optic atrophy, and sensory and motor neuropathies.5,8

Dapsone-related peripheral neuropathy, although an uncommon side effect of oral treatment, is clinically significant due to its frequent subtle onset (especially with motor neuropathy) and the high potential for long-term persistence, including after cessation of dapsone intake.5 The onset of peripheral neuropathy after initiation of oral dapsone therapy is variable.5

Guidelines for monitoring the hematologic adverse effects of oral dapsone are in place, but are lacking for neurological side effects, such as peripheral neuropathy.2 Little direction for monitoring the neurological side effects of oral dapsone is provided in the literature. This article discusses various reports of neuropathies and the subtle initial symptoms that clinicians need to be cognizant of during treatment.

/www.ncbi.nlm.nih.gov/pmc/articles/PMC2921741/

I would be very careful with this. This is a rare, but still very real side effect of dapsone and could be serious.

I’m more concerned about this:



/www.ncbi.nlm.nih.gov/pmc/articles/PMC3771723/


(Dapsone-induced methemoglobinemia)

Lapis_29 said...
kidneys can be treated

first off there are great herbs to take like Juniper, uva ursi, nettles (freeze dried only), etc.

this is a good product

/www.amazon.com/Dr-Christophers-Original-Formulas-Capsules/dp/B000N3BZIA/ref=sr_1_9_a_it?ie=UTF8&qid=1538786107&sr=8-9&keywords=kidney%2Bherbal%2Bsupplement&th=1


another thing to do is rub DMSO directly on top of your kidney on your back. Much of kidney disfunction is simple inflammation and DMSO is an excellent anti inflammatory. You can get your kindeys back to functioning well, they respond better than other organs to herbs.

I have a kidney support supplement - it has uva ursi and a few more things I can’t remember..

Rainy cloud said...
Girlie check it out:


/www.amazon.com/Ancestral-Supplements-Kidney-High-Selenium/dp/B078K8L672


Sometimes eating what is bothering you will help you. (for example, eating raw thyroid gland for thyroid problems).

yuck.

Dahlias said...
Girlie, what did you decide to do? How are you doing?

Well I was supposed to start today.. but didn’t.

I’m experiencing Analysis paralysis.

The NP talked to Dr J (can’t remember if I mentioned this) and said it’s okay for me to do just M/W/F instead of all 5 days.

So now Monday’s out - I’ll probably do Tuesday/Thurs/Fri

I don’t know - it was so severe and I didn’t get a solid answer that they think it was a herx.
I’m concerned it’s some kind of sensitivity I’ve developed and just one dose might cause a severe reaction...

And I don’t know if it is the dapsone or the daraprim

I do know it’s not Rifabutin - I did take it after the reaction for three days and was fine.

Ugghh