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How long to let herxing go? (Lyme)


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Ian(10)saw Dr. J about 6 weeks ago. He put him on two antibiotics and a cyst buster. We have had to work up slowly to taking all of them and we are still only taking the cyst buster once a day, two times a week. He has been able to do this for 2.5 weeks. But his mood is rotten. Just rotten. I am not sure if it is herxing or if the meds are just not agreeing with him. I am going to call the office today because we really can not keep on like this. I gave it a couple of weeks, but seriously, we can't keep up like this. I also give him probiotics and have done epson salt baths, etc. Nothing is really helping the mood and arguing constantly. The weird thing is that this summer when he was on two antibiotics, different, the augmentin really didn't agree with him so we took him off and kept him on one, azythromicin. And he was much better mood wise, even seemed a bit less OCD. I am tempted to strip him back to just one again for a while because honestly we can not live this way, he is losing screens constantly, his mood is rude towards us, name calling, arguing, things like us clearing out throat, even talking baby talk to the pets, he flips out "STOP!" I am imagining that Dr. J will suggest scaling back to only two for awhile, but I would like to scale back to one for a while and see how he does. Is that unreasonable? Sometimes I wonder if he is just on too many meds. I am tired of medicating him and seeing no results, and seeing him do better OFF of them. Thoughts? Yes, we have tested for all the co-infections, among other things like viruses, etc. There is nothing else found. I do not have the patience or funds for more intensive testing, or new doctors. After 4 years, honestly i am exhausted. I hate to give up on Lyme too early if that is indeed it (we have tested 3 times and Dr. J says he was exposed to the lyme, but his markers for so few....so I don't know. But honestly, I can't keep on like this any longer. I expected some herxing, but we are heading into week 3 of these issues and it is really wearing on all of us. He can't take any more pills right now, even supplements. His stomach gets upset. He is on claritin and uses melatonin to sleep. It is just too much.

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Cyst busting was brutal for my son. He managed to do half doses for 5 weekends and then we had to stop. But...a few weeks later, he was way better. Better than before we started. So it did have benefit. And that might be what you're seeing when he does badly on a combo and then is better on just one abx. It could be that sunshine that comes after the hurricane. IDK.

 

But to answer your question, even if it is a herx, my LLMD always had us pull the plug when things got to be more than we could handle emotionally. So I think you're right to want to back off in some way and come at it from a different angle.

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Are you addressing methylation to improve detox efficiency? I'm not sure Dr J is up on that.

 

DD had no trouble with multiple combo abx until we got to the cyst buster tindamax. She was able to detox through all the combos with proper support for her methylation defect and lots of probiotics. This included biaxin/rifampin/A-Bart, biaxin/rifampin/plaquinel/A-Bart and azith/mino/plaquinel/malarone/A-Bart. If you go down to one abx, make sure not to use rifampin alone as bacteria can build up resistance to it quickly if used as monotherapy.

 

When we added the cyst buster she was no longer able to do this. It didn't work to pulse tindamax while keeping the other abx continuously in place. PANS symptoms just ramped and ramped with no let up. We ended up having to pulse everything (3 days on 4 off) allowing detox to progress unimpeded on the off days. This would bring her back to baseline by the end of the off period. Then each successive herx would be smaller and smaller, each time getting to a better and better baseline. When she no longer herxed with the pulsed cyst-buster and other abx combined we weaned.

 

She has been in remission since April 2013.

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we have treated differently with an integrative MD and homeopathy, but we have had 2 herx-like situations. one quite severe involving contamination eating issues -- very scary. it lasted about 7-10 days at the most severe and then gradually got better. the other, about the same 7-10 days with obnoxious, antagonistic behaviors. this not so bad, but annoying. when I discussed with doc, at first he thought I was talking about general behaviors ds had. I corrected with saying 'I believe the new meds are driving this behavior'. he said 'good'. I agree it is from a medical standpoint, however, he is not living with the kid each day.

 

I do not understand specific abx, cyst busting, combos, so take my opinion for what it's worth -- I cannot imagine living with these behaviors for more than 7-10 days. yes, forging through and getting it over with is great in theory -- reality is that you are people with emotions and life to live. you must consider your mental status and fatigues as well as the medical.

 

I did attend the TACA meeting in philly last year. dr O discussed using charcoal for herx reactions. can you ask your doc about that?

 

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I agree I would pull the Tindamax. Our LLD (Same as LLM's) and I agreed not to go Tindamax route with DD who is almost at 100%, because a number of people have regressions with it. Instead we are pulsing 3 weeks on, 1 off to try to get at the cyst form. We just got through the first week of abx in I've lost count but over a year and it went fine. I find Burbur by Nutramedix really helps with herxing, 5 drops in water every four hours. Hugs to you.

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Thanks, everyone! Yeah, we can not go forward as is. I did call Dr. J's office yesterday and they suggested stopping for 48 hours, everything, then call back to see what Dr. J would want to start up again. So I decided to pull the Tindamax and Suprax for now, and keep him on azyth as I know that he does ok on that. I worry about strep exposure this time of the year. I am away for the weekend (thank God I have a girls weekend planned with a friend, I seriously need a break) so am actually going to keep him just on the azyth through the weekend, and then see how he is. I find it takes more than 48 hours to calm down, so think we need more time than that to tell. I will call on Monday and see what they think. Maybe we can take off a couple of weeks and then pulse the other two or something. Ian is not 100% right now, I would say maybe 65% (I always think of the Saving Sammy story and how bad he was, not leaving the house and such).

 

Saying that, I want to use these few days to really make sure his probiotic is right as well. We get a good one from the health food store that is for children, but does anyone have suggestions on the best one or these kids, with out strep strains in it, etc? I would prefer one that does now have to be kept cold. It just helps us be more consistent if we can keep all the pills in the same area of the kitchen on hectic days.

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I wonder if anyone has tried Flagyl for their child instead of Tindamax and found it more tolerable?

 

I always keep probiotics cold- even if they weren't cold shipped.

Good ones without strep strain:

 

Custom Probiotics CP-1 (does not require cold ship)

Klaire Ther-Biotic DETOX

Theralac

Culterelle (does not require cold ship, 1 strain only, 10 billion, but I like this one too)

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So sorry you've had a rough time! Is he taking anything for detox? I agree - Burbur is a good one. Our LLMD had my 65 lb kid taking 15 drops, 2-5 times a day for a while. He said you can do it more frequently with no side effects. If you suspect he's herxing, you need to detox, detox detox! There are lots of options.

 

Good luck and enjoy your time off!!

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If he will drink it, Alka Seltzer Gold is good for detox and upset stomach. My dd balked at the taste first, but it must have made her feel better since she then started asking for it. It needs to be the Gold.

 

I like Klaire Ther-biotic Detox Probiotic. It needs to be refrigerated. And Culturelle & Florastor (which does not). Some people have noted issues with Florastor though.

Edited by philamom
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