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.

Thank you ladies for the heartbreaking and honest replies. I guess I got excited thinking treating my sons lyme would erase his PANS. wishful thinking i know. He was tested by Dr T and is not strep induced PANS even though he did rapid test and was positive for strep at time of PANS flare or as i like to call it :all ###### breaking loose. PhillyPA my heart goes out to you. it's such a difficult place to be with our kids having a disorder that alot of Dr's refuse to even believe in. I hold out hope for this evil disorder to one day stop, but will it??? Will my son always have motor tics and wet himself as well as other issues?? I did IVIG for my son, it knocked out the ocd, but now with a new flare it's back, in a different way. Clearly it's many infections of the "right" kind living in some sort of symbiotic way. S&S you make a good point, why don't adults get PANS? I have lyme too.

Anyone ever prescribed Flagyl one week on one week off for a month? I have seen people take it on weekends or for 3 out of 7 days a week but every day for every other week for a month?? I know this drug can cause yeast issues and we are dealing with Candida so it's a concern.

I was speaking to a mother of a PANS/LYME child like my son and she seems to think PANS is LYME. I don't know what to make of this. when these kids get into remission does the PANS go away? I don't know because i am not there, but spoke to a mom who said her child hasn't had a PANS flare for 4 yrs since doing lyme treatment! She also said that lyme is an epidemic and many parents are accepting the 1 band is negative and even 2 or 3 and being told their child does not have lyme, only causing more confusion. I found lyme quite quickly after PANS so i haven't really had a chance to become as informed as i would like. I am registered at the conference at UCI so maybe this will help. Thoughts anyone?

I love the IV glutathione, it really helped me, but our new LLMD offered oral. When I spoke to rep about glutathione he said IV was "gold standard" and that nebulized was next, as the lungs have large surface and more is used. He seems to think oral was a bad idea for a kid with leaky gut. Oral is certainly easier , as my son hates nebulized.

I used a similar product called candida cleanse with same ingridients used 1 drop at bedtime, my son woke up 10 hrs later paranoid and dark brown urine, It was so strange, i had never seen anything like it, urine had strong odor and he tried to hide under his bed.(he's 5) I wont attempt that again. Interestingly when whisked him off to culture his urine it showed Strep D! lab at urgent care poh poohed this saying it was "contamination" I re cultured at Ped, and came up with nothing, which made my son's Pedi really look at me like i was nuts I suspect the black walnut may have had a role in provoking this.

I wouldn't dream of stopping probiotics. even with leaky gut. S&S is there a reason you avoid Sach B? I ask because I wonder why this is needed. I know my son takes it, and it's supposedly a beneficial yeast, but I question this. edit for typos

HI , don't post much here but really appreciate the knowledge and trial and error that's shared. My question: What is the best delivery method for glutathione for a young child? Nebulized vs. Liposomal liquid. Since we suffer from dysbiosis of the gut, I question how effective oral version is?

It's 10 days of Clinda with the LAST 4 days you add rifampin, he says this clearly in his radio interview he recently did w/ Marcel.

Thanks, this is such timely info, I struggle to grasp all this as my lyme brain is fuzzy at times. My son is heterozygous for both A1289 and the C66 I always wonder what the ideal amount of active form of folate is recommended. My Dr seems to think 1000 mcg is ideal. I would think if you have a compound C66 you would need more "help" methylating? How far into the rabbit hole of gene defects must one go? meaning how much more gene testing should we do?

HI Julia, Vitual academy is specific to your state or all states? I am opting for homeschool since Kinder is such a breeze and healing is most important at this time. It is a country-wide school but is only offered free in some states. Just googled "What states have Virtual Academy for Free" and came up with several. Thanks! I think I will opt to homeschool, kinder is so easy anyways. He's between kinder and 1 st so I can tailor his studies. I didn't realize CA state law doesn't require school til 6.