socalmom

Since many Alzheimer patients have Lyme and many PANS kids have Lyme I am not surprised to see someone trying to link the 2.

Do you mean could you have passed it to your wife who then passed it via placenta to your son? -Yes, male to female transmission is far easier than the reverse. Since lyme is a spirochete like syphillis it can act very much in the same way only lyme has far more DNA than Syphillis. There are confirmed cases of congenital lyme as well as other tick born infections being passed via placenta to child in utero. Babesia is one that come to mind.

I use GSE tea tree oil and Xylitol on myself Tri Guard it's called. . I had MARCONS. also my son does a regular spray as well, GSE, Xylitol. Seems marcons is going to be a life long issue as we go in and out of moldy buildings in out daily lives.

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.

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?

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.

Many of us started out Band 41 positive only. I think in order to know what you are dealing with you need to turn over that stone. I was lucky to have others here alert me to the fact that many PANDAS/PANS kids end up testing positive for lyme. My son is also congenital and negative on a Igenex WB but positive on Igenex PCR in his blood/serum. Best of luck, contact either ILADS or Lymedisease.org for LLMD referral.

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.

Hi Betty04, I may be mistaken but when my son had IVIG I was told you cannot have an IgA deficiency. IgG subclass is fine but IgA was one even NIMH said was uneligible for IVIG. maybe someone else will chime in here.

Yes, just make sure you take it several hours before or after anything else (it detoxes everything...good and bad.) tpotter, is 2 hours plenty of time between supps and charcoal?

Thank you so much, DS seems so irritable on it at 3 x a day. we have compounded pills, drops were suggested. 1mg is the lowest dose, so maybe I'll try slowly ramping up. He's such a powder keg these days, I better batten down the hatches.

My son started compounded Ketotifin and instantly became angry, he asked to stop this. Anyone know this drug? it says it's an anti histimine and mast cell stabilizer. It seems to be a no for us. I trust our LLMD but this one seems odd.

This poor family, this is criminal, I can't imagine what they must be going through. We need to speak up , this could be YOU one day. I have had a similar experience at CHLA with head Neurologist. I owe a lot to the mothers on here who shared info and told me to be aware of how prevalent lyme can be with PANS kids. My son has both.

I went to the UCI -University of California Irvine PANDAS/PANS symposium and they now say it's a gene. A gene linked to Parkinsons. studied 1,000 kids and this is what they came up with, although there were Dr's there that disagreed and didn't wan to even talk about Lyme. I sat quietly and listened, there was only 1 LLMD in the crowd. They also said Parents need to push for AAP to recognize this disorder, *sigh* it's always on the parents.

Yeah, I heard it is rough on you, as it's a cyst buster. ok so I fel confident after reading others are doing similar amounts of time on Flagyl. KaraM good to hear it hasn't caused your yeast issue to become worse.