Herxing- or just making it worse?? Any and all ideas greatly appreciated

[Brandon415]

I posted a couple weeks ago regarding my 8 yr old son who just started Azithromycin on Oct 2nd. He seems to have deteriorated so much in this short time span I am considering pulling the plug on the AP experiment (I don’t want to- I just don’t know if i have a choice, he is suffering). His JIA primarily affected his wrists. He would complain about other joints on occasion but the wrist were constant. When we started, probably within a week, everything the JIA has touched in the past flared. We were taking Azithromycin every day, now we’ve lowered it to every other day. Haven’t seen any major improvements. Our doc suggested we try Nystatin in case any Candida or fungal infections were getting out of control (we started 2 days ago- so I can’t tell if it’s doing anything). Doc suggests we just keep taking Aleve and our regular supplements (which we have been taking forever, and were doing much better on before we started AP). My question to those who have been through this is; is this typical of a herx? Or is the AP just destroying his gut and causing a massive flare? I know there is no way of giving me a definitive answer. I guess I’m just hopeful that we will turn a corner soon- at this point I’d be happy just to get back to his baseline. I can’t stomach the idea that this just isn’t working and I’m causing unnecessary pain and damage to his joints. The doc I go to has his PA run all of the pediatric cases- and I can tell she is inexperienced. I know she has to run everything the doc, and follows his protocols but she doesn’t seem to be as knowledgeable as I’d like. I’ve always avoided steroids (as I’ve always tried to do everything au naturel), at this point I think we should get him on a taper or something. If anyone has read this, this far I appreciate your time. I’m just losing it. Putting the kid on a biologic was always a hard “no” for me, but I’d be lying if I said I wasn’t seriously considering it at this point. Any thoughts, advice, critiques? All are appreciated. Thanks

[PhilC]

Hi Brandon,

It sounds to me like it’s working, though perhaps a little too well. The azithromycin is making the bacteria sick, and they can no longer hide from his immune system. The increased inflammation is caused by his immune system attacking the bacteria.

How much azithromycin is your son taking, and for how long did he take it every day?

Phil

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

[Brandon415]

Hi Phil,

Thanks for the reply. His dose is 250mg. We were giving it daily starting Oct 2nd, on Oct 17th we switched to every other day. We just started Nystatin (2x day) at 500,000 units this past Fri. For whatever it’s worth, my gut feeling is telling me to keep on going- the kid is tough (you’d have to be having lived with this basically your whole life) I’ve mentioned to him, we might need to stop AP and he doesn’t want to. He wants to give it 3 months. On top of the Meds listed above we take turmeric, fish oil, vit D3, Boswellia, bovine spleen, colostrum, and a few other random supps. We eat pretty decent, we avoid gluten (even though celiac was negative) primarily drink Raw milk, if it comes in a package we try not to eat it- but he is 8 and is at school with his buds so I know he sneaks some junk food every now and then. We home cook 95% of our food. He swims 3x a week and I make him lift weights with me in the garage 5x a week (only for 15-20 mins). I hope we turn a corner soon with the meds- because I feel with the “lifestyle” part of managing this, we’ve got it dialed in. I’ve noticed you seem pretty involved on this Blog, and are quite Knowledgeable- if you have any ideas I would most definitely appreciate and consider them.
Cheers!

[Brandon415]

Well, I got my son a 4 day steroid taper. Started yesterday afternoon, and overnight we see a dramatic improvement. It just bums me out a little knowing that it won’t last, but I just needed to get him some relief (even if it’s only temporary). Also, it is my understanding that if there is too much inflammation present the Abx can’t really get to the intended target.

[Linda L]

Have you ever considered stopping dairy products? In my case eating gluten free and avoiding dairy products products help.

RA tried everything: Methotraxate, Arava, Humira. Pneumonia three times. Anemia. Very low iron. Hypothyroidism
AP from April 2014 till August 2015. No luck.
Current medications: Natural thyroid, Mobic, supplements,
vitamins and minerals.
MTHFR heterozygous

[Brandon415]

Hi Linda,

I appreciate you reaching out. We did try a strict AIP diet for a while (which doesn’t allow any dairy, eggs, grains, nightshades) we didn’t really notice much of a difference. For us it’s sugar, and starchy carbs. If we can avoid those we do much better. It might be worth a shot to avoid milk again and see if it helps. Our challenge is, he is very skinny, not underweight, but probably close. Eating is always a fight, he never wants to eat. Drinking whole milk has been helpful in putting on some weight.

[Linda L]

A dietitian told me to eat nuts between meals if I wanted to gain weight. I agree with that. People usually are obese when they eat between meals, not just three meals a day.

RA tried everything: Methotraxate, Arava, Humira. Pneumonia three times. Anemia. Very low iron. Hypothyroidism
AP from April 2014 till August 2015. No luck.
Current medications: Natural thyroid, Mobic, supplements,
vitamins and minerals.
MTHFR heterozygous

[PhilC]

Hi Brandon,

Brandon415 wrote:

We did try a strict AIP diet for a while (which doesn’t allow any dairy, eggs, grains, nightshades) we didn’t really notice much of a difference. For us it’s sugar, and starchy carbs. If we can avoid those we do much better.

This leads me to suspect that dybiosis is part of the problem. Is your son taking a good probiotic?

Phil

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

[Brandon415]

Hi Phil,

We do give him a probiotic daily. The brand is Physician’s choice and it’s a 60billion CFU we just get it on Amazon. He appears to do well on it. I don’t mean to be gross, or share too much information, but he has very regular, solid bowel movements. The doc we are going to did a full IBD expanded panel and everything was negative. If you have any recommendations for a good probiotic, I’m all ears!

Thanks for the reply!

[Author]

Posts