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

Recap - I have done 3 cycles of the Persister protocol.

Cycle 1 went okay - but kidney function suffered (GFR and Creatinine). 1 1/2 weeks later, the KF normalized.

Cycle 2 - crazy herx....or bad reaction - you pick. Almost went to the E.R. due to high fever, high heart rate and full on body pain...and a reaction that seemed seizure-like. My arms were jerking and I couldn’t stop the movement .
Kidney function off again. Normalized after about 2 weeks.

Cycle 3 - Only did M/w/F persisters instead of the 5 days. Tolerated it better..
Kidney function - suffered again. I haven't retested but will this week to see if it's back on track.

Am doing Alinia this week and cycle 4 starts on Monday again. (with the Dapsone/Daraprim/Rifabutin)

I called the J clinic this morning...asking if I should risk doing this to my kidneys again. How many hits can they take.
The triage NP said she'd pass this on to Dr. J tomorrow morning...and she should have an answer by the afternoon.

I thought I might stop regardless what they say.....but I have had about 7 improved days in a row...this has never happened. I'm feeling confident that I am getting close to remission.

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.

sebreg said...
Ack, that is such a difficult conundrum. But it's so exciting about the progress! is there any way you could take a bit of a longer break before doing the next daraprim/dapsone cycle? Hopefully Dr J's office will be able to offer guidance, you can't be the first patient who has had this type of issue with these meds so hopefully they have a good understanding of the safest path forward.

When kidney function gets out of whack, it doesn't mean there has been damage right? especially if it restabilizes?

I have read that medications can cause temporary damage BUT - to keep doing it X 3 maybe pushing it.

I met a Nurse a few months ago when I was taking my friends elderly mom to the Wellness clinic and they were discussing her lowered kidney function (my friends mom)
Then the Nurse mentioned an antibiotic had damaged her kidneys (the nurse’s - not my friend’s) - and her gfr was something like 25 or 30 ( in comparison - mine is in the mid to high 50’s)
Less than 60 is stage 3 kidney failure. Above 60 is the target. The higher the better.
They don’t have a gfr test number for stage 1 and 2 kidney failure because over 60 gfr the testing isn’t very reliable/accurate.
This nurse said it took five years for hers to come back.
She thought it wasn’t going to - and then one day the dr tested her and she was good.

Can you work with a naturopath and find something to support your kidneys during the cycle? Or maybe the JSC knows of something? I don't know of anything myself as I have never had an issue with kidney function except for drinking 1 gallon of water a day, and cranberry juice. I am sure if you searched on the internet there has to be some supplement that will help kidney function. Could be worth a shot.

I would say if your levels continue to return to normal after the cycle I would keep going with the protocol especially since you notice improvements. Improvements are hard to come by in this game.

Sheeks175 said...
Can you work with a naturopath and find something to support your kidneys during the cycle? Or maybe the JSC knows of something? I don't know of anything myself as I have never had an issue with kidney function except for drinking 1 gallon of water a day, and cranberry juice. I am sure if you searched on the internet there has to be some supplement that will help kidney function. Could be worth a shot.

I would say if your levels continue to return to normal after the cycle I would keep going with the protocol especially since you notice improvements. Improvements are hard to come by in this game.

I think I’ll look into some kidney support - but not see a NP - i wouldn’t get in for a couple weeks and I’m scheduled to start up on Monday again .
I’ll go to our health food store and talk to someone there - or just go to the “kidney” support area.

But if it’s med induced - probably can’t stop it with supplements.

I really feel this is working - best I’ve felt since starting treatment 4 years ago.
Not just specific symptoms - but I feel normal again for most of the day.

Dahlias said...
Tough decision. It would be really hard to stop now after making so much progress. This is where I think it really pays to have such an experienced doctor -- he must have seen many patients in your shoes. Looking forward to seeing what he says.

I’m hoping he’s seen this before.
It was a shock the first time I saw the kidney function test out of range.
Looking back at my gfr over the past few years - it was often in the 80’s and 90’s.
All those other meds didn’t seem to harm them.

I told hubby to be prepared to lose a kidney to me ...

I’m hoping I will get an answer tomorrow...

I’m not sure though if the triage nurse has the timeline down.

She repeated it back to me and I had to correct her - it’s important that dr j knows that it happened every cycle - even on the three days per week dosing.

Also important he knows they do normalize after

Rikky1 said...
Wow you actually talked to someone from Dr. J's clinic the same day? It took my wife 2 weeks to get an answer on her coritsol levels and it went through this proxy woman who seems to know little or nothing about what information she's passing back and forth to the doctors and patients.

My wife has just about had it with the J's clinic. It's too impersonal and you can't seem to get anyone to talk to you about things when they come up. My situation wasn't so bad I never had to call them except once but I can see the frustration my wife and others have went through.

The tough part is he is very experienced and many people get better with him. The problem is dealing with the horrific support staff.

I would do another cycle with the Dapsone/Daraprim and see if your gains hold. I don't think Dr. J will keep you on them longer than 6 cycles anyway cause he knows the harm it can do longer term.

I know what your wife is talking about.
Previously I had called - after my bad reaction to the 2nd cycle of persisters.

I had a couple questions but she didn’t seem to “get” what I was asking about.
When I got the call back a few days later - the answer was not what I needed to know... so I explained again and she took that back to dr J and then called me back again.

They need to be educated in Lyme and co’s treatment.

This time I got the call back within a couple hours and although I had to explain twice what my concerns were - I think she understood what I’m asking.

She said she will have an answer by tomorrow.

I just wish they would consider the time change.
I will have to take my phone to bed because I often get a 6 or 7 am call 9:00/10:00 their time)
That’s not rocket science - I keep emphasizing Im on the west coast .

But I can overlook all that - as long as I get the proper protocols sand make progress.

I would do it with more frequent testing to monitor kidney function.

1000Daisies said...
I honestly don't know, Girlie. How bad are the kidney test results? I'd probably defer to the doctor on this one. I'm sorry - that is a hard choice.
I'm confident that you will get through this though!!!

After cycle 1 :

GFR = 57 (range is > 60)
Creatinine = 96 (range is 45-90)

After Cycle 2

GFR = 54
Creatinine = 101

After Cycle 3

GFR = 57
Creatinine = 96

It actually is considered Stage 3 kidney disease...as soon as you go out of range it's already Stage 3 (I know - doesn't make sense)

Georgia Hunter said...
Increase your antioxidant supplementation when taking the protocol. Two of the problems that can occur at the nephron are increased oxidative stress and physically overloading the glomerulus. Antioxidants, like glutathione and Vitamin C (needs to be eaten) can really help with this. Also look into your selenium levels, they could be down. They are most likely down for everyone on this forum. Selenium is important in T4 to T3 conversion so people with thyroid problems often have this as well. It works on both the thyroid hormone conversion AND in the neurotransmitter pathway in BH4 recycling.

http://psjd.icm.edu.pl/psjd/element/bwmeta1.element.bwnjournal-article-abpv53p663kz;jsessionid=763d5c2a963e977625e968b09f4b407e

Thanks, Georgia Hunter.

Okay - I'll up my vitamin C. I currently take 500-1000 mg...but I will take 5,000 mg/day. or I can go higher.
I haven't had selenium tested. (Dr. J requested a ton of labs...but selenium wasn't one of them) - but I do have good FT3 levels...so maybe I don't need to supplement? (My FT3 is in the upper end of the range)

Girlie i don't think your kidney numbers are bad they're slightly out of range there's no reason to change or worry about anything (but I know you do ;o).

Dr. J may give you something to help flush your kidneys but you at least seem to of stabilized at a level. Dr. J is going to tell you he wouldn't worry about anything and to finish your cycles until you see him again.

Tough spot, girlie. I think since you are feeling so good you should push through. If you don’t, you may look back and regret it.

Bell peppers (i think red) are actually higher in vit c than oranges. The top 5 are guava, bell pepper, strawberry, kiwi, oranges.

I had a urine test with one doc that measured vit c. I was supplementing a lot at the time and he said I was still low.

Rikky1 said...
Girlie i don't think your kidney numbers are bad they're slightly out of range there's no reason to change or worry about anything (but I know you do ;o).

Dr. J may give you something to help flush your kidneys but you at least seem to of stabilized at a level. Dr. J is going to tell you he wouldn't worry about anything and to finish your cycles until you see him again.

It’s actually stage 3 kidney disease.
Even though I’m just under the range.
The testing over 60 gfr is too unreliable/inaccurate to rate ie stage one and two.
So they just rate when you get to the stage 3
It’s strange.