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Hi all.

 

Could use some perspective. DS10 has been on lyme treatment for 4 months, bartonella tx for 3 months. Since that time, many things have improved. Mood and behavior, huge improvement. Cognitive abilities and concentration, huge improvement. Compulsions, now pretty low. Anxiety was high, but just switched abx one week ago and now anxiety seems on its way out.

 

But, with the switch in abx (and/or dental work that happened at about the same time), his tics have increased to almost one every 4 seconds. He is shaking and jerking his head CONSTANTLY, followed by a more complicated movement every few minutes. He has been this high before, with larger motor movements, but this time it seems particularly bad (but then, it always does, doesn't it).

 

He may also be PANDAS. For years, he had very high ASO and DNASE levels, although when last tested (about 3 months ago, they were normal). Family is all strep carriers, and younger brother is sick right now (but doesn't seem to be strep).

 

Any thoughts? Is this a herx? Is he on the right path? If a herx, can anyone share detox suggestions for a 10 year old boy, about 90 pounds? He also has some methylation issues, but haven't started dealing with them yet.

 

It's hard to stay the course when you see your kid like this, but I don't know that stopping is going to make anything better.

 

Thanks. Having a disease where the treatment protocol is you get worse before you get better is pretty bad.

Edited by lfran
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We had a similar experience - great improvement in the first few months, then a severe herx/return of dramatic tics when we changed meds and added tindamax on weekends. We did tindamax for a month, but he became such a mess, (all sorts of "Pandas" symptoms), that we stopped. The tics and behaviors faded over the following 3 weeks. We did genetic testing to make sure his body could properly detox lyme toxins (HLA DR testing and inflammation makers like MMP and MSH, discussed on www.survivingmold.com) and found that piece was ok but we went on to look at KPU and he tested positive. He has a zinc/B6 deficiency that compromised his immune system and made it too hard to handle a strong herx.

 

He's responding really well to KPU treatment and when that's done, we may look at metals (he tested somewhat elevated for mercury). Then, when we feel his body has been detoxed and supported enough, we'll look at the lyme/bartonella again (he remains on abx for this but we're not being super aggressive - just keeping things at bay for now).

 

So it sounds like a herx. You can look at detox - milk thistle, betonite clay, chlorella (I like this stuff a lot), charcoal, water, alpha lipoic acid (ALA)...and good 'ol motrin helped for behaviors. If it continues for "too long" you may want to discuss with your LLMD what other barriers might be in the way. You can also take an abx holiday for a few days to see if things improve. Yes, it sucks to get worse before you get better. But not every herx should be "toughed out". Serious ones may indicate other underlying issues the body is struggling with. Food for thought...Hang on to the improvements. Eventually, I believe you can get to the bottom of things and get lasting improvement. DS is way, way, way better. It's just going to be a long journey.

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We use detox supplements from Nature's Sunshine. I'm not trying to push a particular product, but since you were asking for suggestions, you might want to take a look at their website.

 

Our LLMD uses their liver detox, bowel detox, urinary detox, and lymphomax, as part of her core supplements that all of her patients take. We couldn't get he exact same products in Canada, but after 2 months on lymph detox and enviro (general all-round) detox, my kids do not have swollen lymph nodes for the first time since I can remember.

 

My DS does not have motor tics, only verbal ones. Motor tics is the only PANDAS symptom he does not have. So I don't know if this will help with tics or not.

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We too would see improvements but an increase in TICS with antibiotics rotations. When we first started Lyme treatment our older son's TICS increased for 12 weeks and then settled. As soon as he was trending wonderfully "no TICS and sustained improvements" our Dr. did another antibiotic rotation, a few milder TICS returned (mostly a dry unproductive cough) for another six months. The cough was "one" of the clues that eventually lead us to treat for Babesia. Upon treating for Babesia the cough returned in full force with jags of coughing. He is now 9 weeks into treating Babesia and fairly close to full resolution of TICS again. In addition to the cough, he broke out in a petechial rash along his spine in week 5... so we knew we were absolutely on the right path of treatment. With each rotation, the TICS were less in number and intensity..... everything has faded over time with improvements sustained. Truly a saw tooth recovery.

 

BUT, I would agree with LLM, the herx has to be tolerable and many things need to be addressed or investigated along the way. We had a huge viral component among family members so an anti-viral protocol has also provided tremendous gains towards recovery. We also checked for mold and have no issues there. KPU is problem for our family. Myself and our older son did wonderfully with treatment. Our younger DS, trended worse then better with treatment. Our younger DD, got worse with treatment (perhaps other things going on too) and we had to suspend treatment at this time. We will also investigate heavy metals with her as a result of her response to KPU treatment. Checking the gut with a comprehensive stool analysis can also be important to determine yeast issues, status of good bacteria, digestive enzymes (something we need to address with younger DD too), parasites, worms (yes, some have worms and not often talked about on the forum), inflammation, etc. Many LLMDS believe that worms, viruses, mold, KPU can all create stumbling blocks for effective treatment.

 

For us, the TICS are an indication of herx, lasting infections, reminder to be vigilant with detox and progress. We have had full remission of TICS at least three times over the course of the last two years for older DS... I am hopeful we are truly getting at last bit of infection and 'almost' grateful we had such an obvious symptom.

 

-Wendy

Edited by SF Mom
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