Jump to content
ACN Latitudes Forums

socalmom

Members
  • Posts

    169
  • Joined

  • Last visited

Posts posted by socalmom

  1. 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.

  2. 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. :huh:

     

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

  3. 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.

  4. 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.

  5. 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.

  6. 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.

  7. My husband and I take Flagyl 7 straight days per month (we have a different protocol the other 21 days of the month). We have been doing this for over a year. Take probiotics, drink lots of water, or whatever else you do to detox.

     

    We feel really crappy (sorry for the tacky word) on our Flagyl weeks, which the doctor attributes to herxing.

     

     

    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.

  8. 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.

  9. 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.

  10. 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?

  11. Anyone ever use Candida Clear by NOW foods (Paul D'Arco, Black Walnut, Oregano Oil, Biotin, Caprylic Acid) for yeast in chidren? I see it has a bulb of garlic listed under other ingredients.

     

    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.

  12. Our son had an extreme and along lasting acute episode d/t T&A while Strep infected. That being said, he did not have a sterilizing run of abx prior to and during the surgery. Dr. T recommends a strong run like Clindomycin or Rifampin to kill off or suppress lurking Strep in the tonsils. Would I do it again? You bet! It was ######, but that was in part because it was not done correctly. I belive that my son would have gotten worse and worse with those icky tonsils in him, and there would be little chance of recovery because the Strep was hiding in there. In addition having a carrier in the family will decrease chances of recovery. If you can get them both taken care of, it may be a good thing...

     

     

    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.

  13. Methylation Diagram

     

    Ok, this is very rough and my explanation may not be perfectly correct in the true medical sense, but I took the diagram Yasko and others use and added some comments in red.

     

    My comments are aimed at the C677T mutation of the MTHFR gene. I don't have as much knowledge on how the A1298 mutation effects everything, because no one in my family carries it and also because there's way less written about it. But I wanted to try to explain why knowing if you have a MTHFR gene mutation matters to a Pandas or lyme kid. (it also matters to people with a family history of heart disease, stroke, macular degeneration or history of miscarriages, but I'm not getting into all that).

     

    The thing that effects our kids the most are neuropsych and detox issues. Our kids tend to have problems with seratonin and/or dopamine, both of which are shown on the circle I numbered #3. You can see that the MTHFR gene plays a role in how your body synthesizes tryptophan into seratonin and tyrosine into dopamine.

     

    On the far right circle, where I have #1, you see how MTHFR plays a role. MTHFR is what makes folate (the inactive form of B9) into methylfolate (the bioavailable/active form). At the point in the circle where you see homocysteine, your body uses methylfolate and methylB12 to recycle homocysteine into SAMe, which in turn gets turned into seratonin (it also does other things but seratonin is the part I'm highlighting).

     

    If B6 (the active form is P-5-P) is present, MTHFR also influences how much homocysteine gets converted into cycsteine, which then gets synthesized into glutathione (among other things). Glutathione is the master detox agent.

     

    You'll also see (at the bottom of the circle on the right) sulfite. This is where the transsulfuration pathway starts. It too plays a role in detox. But I don't know enough to speak about it intelligently. I mention it as a starting point for your own research if you struggle with sulfa drugs like bactrim.

     

    There are many other genes - some known and studied, some not - some you can test for commercially, some not - that influence these circles. MTHFR is not the be all and end all for helping your kid to stop being crazy. But this illustrates why some of us have found good results when we supplement with methylfolate and/or methylB12. Since MTHFR converts folate into methylfolate, if you have one mutation on C677 (heterozygous), your body only does this conversion at about 40-60% efficiency. If you have two mutations of C677 (homozygous), you only do this conversion at about 10% efficiency. So you can see where you'd have trouble making enough seratonin and/or dopamine. You might also struggle to make enough glutathione, which becomes in high demand during periods of infection, mold illness or other stressor on the immune and detox systems.

     

    An SSRI (which can help some kids) only makes your existing seratonin last longer in the synapse between your neurons. Bypassing a faulty MTHFR gene by supplementing with already-converted methylfolate helps your body create more seratonin to begin with. Be aware that if you're using an SSRI or supplementing with tryptophan or maybe even melatonin, you may need to reduce or eliminate these other things as time goes on. I learned that the hard way this summer. I didn't reduce tryptophan and was giving too much methylfolate and ended up with a crazed, evil, bipolar child.

     

    Treating MTHFR is like being the little Dutch boy and plugging one hole in the dike. If it's your only leak, it can work wonders for getting the cycles working properly again. if you have other leaks (other gene mutations) than other steps might also be needed.

     

    Hope this helps.

     

    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?

  14. My son did 'Virtual Academy' which is an on-line private school, but in some states they have a free 'state-school' available as well. It allowed for the flexibility needed during treatment. It may just start at 1st grade - not sure.

     

     

    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.

×
×
  • Create New...