Increased motor tics with abx

[socalmom]

DS age 6 now has struggled to take abx, he has motor tic increase with the start of new abx. I was told it's a methylation issue, he's congenital lyme.

 

anyone have this issue, did they eventually die down? I have been trying abx for lyme for almost a year with much issues getting going and being able to add other abx on.

 

he does well on herbs though, even strong lyme herbs. Iam puzzled.

[lismom]

My son 15 always has this issue. He is a big facial and neck ticcer. Always an increase with new abx and really always consistantly ticcing with abx. He is on herbs right now after plateauing from abx and the tics are very low and subltle. Bart and lyme have facial ticcing as a big symptom contributor. So its confusing whether the tics increase from the killing and toxins and/or from irritating the vagus nerve in stomach? Does the abx kill stronger and more quickly versus the herbs? although interesting that one of the herbs did give my son a completely new neurological symptom without effecting the tics. I personally think its a combination of things.

[LNN]

We've had this a few times. My DS was once a big ticcer. He is now tic free unless we get aggressive with abx (like using tindamax or using 3 abx at once). Tics generally subside within 2 weeks if we put a big emphasis on detox (alpha lipoic acid, resveratrol, milk thistle, activated charcoal if we can fit it in), motrin 2-3x/day... if they don't subside, we discuss reducing dose, pulsing or backing off the offending abx for awhile. For my son, the tics seem to come when he can't eliminate the toxins quickly enough. Unfortunately, it also seems to bring behavior issues, loss of impulse control and it hurts his friendships and school reputation (because of the erratic/mean behaviors, not b/c of the tics). That's the biggest reason I tend to slow things down when I see tics. They're the canary in the coal mine that tells me we're moving too fast.

[rowingmom]

DD11 also had this reaction to changed/increased abx. 3 months of biaxin/rifampin cleared them up significantly, but it was a very gradual decline.

 

With a change of protocol we began pulsing tindamax with continual biaxin/rifampin which resulted in an increase in ticcing for the first two days of the three day tindamax pulse. Her ticcing would then decrease somewhat, but not to the original baseline. After 3 months of this all of her symptoms had shown a cyclical and constant increase. My feeling is that she was unable to detox properly after successive tindamax pulses while still on continuous biaxin/rifampin.

 

At the moment she is pulsing all of her abx (tindamax, malarone, azith, mino, plaquinel) for three days on and then 4 days with no abx, but lots of detoxing and probiotics. For the first couple of pulses her ticcing, motor and vocal, went through the roof - new tics, many at the same time. She could not read her blinking, head jerking and mouth stretching tics were so bad. This would occur within 2 hours of the first dose (dosing BID), but would start to decline by the third day, even while still on abx. Her ticcing and other PANS symptoms would then resolve, pretty much back to a new low baseline during the next 4 days, to ramp again with the start of the next pulse.

 

With each successive pulse her flare has decreased and her baseline is now almost at 0. She now only has some minor emotional lability at the start of pulsing (no ticcing) and made it though a major viral infection just before Christmas with no increase in symptoms.

 

I think now that her body has time to eliminate toxins between pulses, we are seeing some real resolution to ticcing that I think was due to toxin overload.

[lismom]

Rowing mom would you share the detox protocol you're using? Thanks, kathy

[socalmom]

Yeah, I was thinking it's a detox issue too. rowingmom, LLM does the child you speak of also have that MTHFR gene mutation? My son does and I fear this is why he's not detoxing well.

 

i have hope now after reading this, I feel like these tics are here to stay somedays, and yes the outbursts and irritability is unbearable sometimes when he's on abx.

 

it looks like PANDAS symptoms yet when I back off they go away.

 

I use charcoal, epsom salts and detox herbs. can't imagine what else I would do at this point.

[rowingmom]

Rowing mom would you share the detox protocol you're using? Thanks, kathy

Since detox involves pretty much everything you put in your body, here goes:

 

Our LLMD uses FuturePlex antitox homeopathic detox drops: kdny-drn, deep antitox, lmph-drn, M-12 brain, lvr-drn as well as NutraMedix pinella and burbur detox twice daily in water taken with other supplements.

 

We use fresh lemon juice in water sweetened with stevia at least once a day, epsom salt soaks at least 3x weekly, 1 tsp psyllium husk every other day to keep everything moving, along with chia seeds in smoothies which works well for this too.

 

We are addressing the MTHFR deletion with methylated B6, methyl B12 and l-methylfolate. We also supplement with liposomal glutathione (2x daily), NAC and l-glutamine (every other day). We will be testing for KPU shortly.

 

We try to keep inflammation to a minimum with DaVinci Enz-Flame and Lutimax pediatric powder once daily, along with a gluten free, very low casein diet (~80% paleo) with lots of green leafy and cruciferous vegetables - low on the nightshades. 2000iu Vit D/day. Japanese knotweed and ALA also.

 

We try to keep pesticide contamination low by using organic leafy greens, apples, and potatoes (when we eat them) and basmati rice from N. California to decrease arsenic load. Organic grass-fed ghee, coconut oil and olive oil for fats. Organic eggs, NZ lamb for protein with good fat (and bone stock with the bones/marrow). Any other sources of protein are low fat because CFAO animals are fed large amounts of inflammatory omega 6 fatty acid-containing grains.

 

We don't eat legumes - see Robb Wolfe Paleo Diet for great explanations of how many different foods can negatively effect intestinal permeability.

 

We eat fermented vegetables a couple of times a week, and coconut milk kefir in smoothies a couple of times as well. DD11 gets 100 billion probiotic cultures/day divided in two.

 

Oh, and just to make everyone think I'm really nuts, I turn off the electricity to her bedroom at night .

Edited January 5, 2013 by rowingmom

[LNN]

Yeah, I was thinking it's a detox issue too. rowingmom, LLM does the child you speak of also have that MTHFR gene mutation? My son does and I fear this is why he's not detoxing well.

 

i have hope now after reading this, I feel like these tics are here to stay somedays, and yes the outbursts and irritability is unbearable sometimes when he's on abx.

 

it looks like PANDAS symptoms yet when I back off they go away.

 

I use charcoal, epsom salts and detox herbs. can't imagine what else I would do at this point.

 

The child (my son) I referred to in my first post does not have an MTHFR issue. My other child does. However, I'll be doing a 23andMe genetic test this month and suspect I'll find other mutations that impact my son - he too has a big problem detoxing (thus the tics).

 

For detox, we use alpha lipoic acid (a glutathione precursor), B6 in the form of P-5-P (part of KPU treatment), resveratrol, milk thistle for the liver, vitamin C and pysillium husk capsules to keep BMs regular. Epsom salt baths don't seem to do much for him. We also use motrin in the mornings and during flares, 2-3 times/day to manage inflammation.

 

We have used charcoal or bentonite clay (both in capsule form) but can't say I saw any change. It's one of those things I give to make myself feel better in a panic. But I had to take my daughter to a neurologist yesterday (long story, not related to Pandas or lyme) and the subject of using charcoal came up. She said they only used charcoal in extreme toxicity situations because charcoal can mess up electrolytes and create its own problems. So if they felt a toxic situation would resolve on its own, they avoid charcoal. Now, this was from a very conventional practitioner and did not address a chronic infection/chronic toxin release. I know LLMDs feel quite differently. But thought I'd toss it out for consideration so you can consider both sides.

 

here's an article on glutathione http://www.huffingtonpost.com/dr-mark-hyman/glutathione-the-mother-of_b_530494.html - any supplement you can take to help the body create glutathione might help - or IV glutathione if your LLMD will do it.

 

You might also want to read Shoemaker's info on mold detox. Even if you don't have a mold problem, much of what he says about helping the body get rid of toxins applies to more than mold. http://www.survivingmold.com/treatment and I really like this article http://www.publichealthalert.org/Articles/scottforsgren/biotoxin%20pathway.html

[MichaelTampa]

I've had this from treatments that released heavy metals, like those killing parasites. It died down after a bit, presumably I was collecting some of the heavy metals out with chlorella and others.

[rowingmom]

Oh yes, and we take milk thisle and use bioactive whey protein in smoothies as well.

 

Here is an explanation of how NAC and glutamate is used in the production of glutathione in the brain: http://evolutionarypsychiatry.blogspot.ca/2012/06/glutathione-we-loves-it-nac-and-autism.html. Perhaps this is the reason why some with OCD and ticcing find NAC to be useful.

[lismom]

What would be considered the number one detox supplement? ALA, NAC or acytel glutithione? Ticcing is our main indicator. Thanks, Kathy

[socalmom]

Thanks LLM, i have the 23andme kit I will be sending it out shortly.

 

I thought charcoal was safe, I prefer it over CSM (cholestyramine powder) as I read that CSM is not good for those with mitochondrial issues. grrrr.. so confusing because we were given it to pull out mold toxins.

 

anyone using apple pectin?

[socalmom]

Michael, that's interesting what you mention with the release of metals as DS tics more when he takes glutathione, and if I am not mistaken it releases metals by detoxing.

[Fixit]

Several questons..

 

lismom..when you say.

Bart and lyme have facial ticcing as a big symptom contributor.

is that for your son, or is that a known condition caused my lyme/bart...that would fall into our thing

 

things have been sllllooooowwwwlllyyy, still improving, i think, you know how some days you think...ok they seemed better, but was i just not paying attention, or hoping it better?

but still better than we were 3 months ago.

 

we started rifampin on Saturday, 6 days ago...at first i thought things immproved, but we had screeches yesterday and we haven't had those in while. I have correlated his screeches/vocals to a gut infection of any sort.

 

Is this a herx?

Does rifampin cause more yeast than other abx...i remember the dr saying get yeast under control before you rif!?!?!

 

should i pulse the abx..4 days on 3 off to give him a chance to detox and rebuild gut?

or is it normal the first time with rif, that you hold the course for a few months then pulse?

 

i also added..about a 16th to a 32nd of a tsp of nac(i have super small measuring sppons) the last sveral days?

does nac increse yeast?

if i added nac is that moving metals and is that the problem? Some are saying that upping glutithione is really the problem as that is pulling metals?

Do i have that right?

[lismom]

Fixit, it is a known symptom. It fits right in with my son. Rifampin gave the worst herxes. Unfortunately he herxed the entire time. I don't think I detoxed well enough at that time. Its not always about yeast. The bacteria being attacked and killed releasing so much toxin is more likely the culprit. Rifampin is tough, but good. We did it for about 8 months and my son's body had enough. For us, it didn't wipe bartonella out. It prob helped some though. Right now I'm doing Zhang's herbs and seeing more results than I've seen in a while. But that is after 2 years of heavy abx. Kathy