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  1. Like
    3bmom reacted to MomWithOCDSon in glutamate/GABA regulation - supplement or not?   
    I don't know a lot, but I know enough to be dangerous!
    Glutamate is a vital and necessary neurotransmitter; we all have it, and we all need it. What's unhelpful and potentially disruptive is the "extracellular" glutamate, that glutamate that cannot be successfully uptaken and/or absorbed because it's just too much for the receptors to handle. I'm not sure if it was Yasko or someone else, but from some source I got the understanding that what can happen (or what they THINK can happen . . . it's still emerging science) over time is that too much extracellular glutamate can sort of "burn out" or fry receptors and make them unreliable.
    In terms of what helps with glutamate modulation, and the extent to which one needs that help, and the right supplement or medication for achieving it . . . I think that's truly tied up in the whole methylation cycle and where, if anywhere, your kid's make-up and/or mutations put a kink in the cycle. For instance, n-acetylcystein (NAC) works very well for my DS as a glutamate modulator; however, some kids (like LLM's DD) do not respond well at all to it. But my DS is definitely an under-methylator, while her DD is more accurately described (as I recall -- she might need to chime in here and correct me) as an over-methylator. LLM is so much better versed in all the methylation stuff, I hesitate to go any further on this particular piece, because I will certainly get too much of it wrong!
    Like everything else, this is just a component of a complex puzzle, and taking anything out of context can potentially set of a ripple effect you weren't anticipating. There are multiple threads here over the last year or so discussing glutamate, methylation, NAC and all manner of connected issues. So I would do some research and take any course you choose sort of low and slow. Observe and see what happens, and then move forward accordingly.
  2. Like
    3bmom got a reaction from Mommy2MCL in PANDAS and Strep outbreak in Duxbury Mass. School and State Involved   
    I am glad this area of Mass. is so proactive. They have authored two bills for insurance coverage for PANDAS kids for their state. This is truly awesome wether there is an outbreak this year or not. I am amazed at the parents ability to come together.
    Anybody with family or friends in the state can help get this passed. They also are accepting personal stories from our community. All the info is on the PANDAS Network. Sorry I would post it but am computer challenged. Can't imagine how good I would be if I studied computers for 9 years instead of the immune system!
  3. Like
    3bmom got a reaction from rowingmom in Strange response to ADHD med   
    Our Dr made us give up Dairy for anger and rage. He does this before giving abx or anti-virals. I wouldn't of believed this would make such a difference if I didn't observe it myself. Also when he was angry and verbally abusive I would leave immediately. Walk around the block, library etc. He was old enough and I needed him to know it wasn't ok. No use in confronting them because they are in an irrational place.
    I agree about sups and especially die off. Our worst flare was after diflucan. Would milk thistle help support the liver.
    I agree for checking for mold. We found it behind the wall, new drywall from the 70's absorbs water and feeds mold. Dr's said it couldn't hurt him but 3 months before PANDAS he failed a hearing test because both tubes in his ears had collapsed with no prior problems. We also had worst rain in 50 years.
    Hang in there. It is really tough right now. My oldest son reminded me when I couldn't go on anymore that it truly is darkest before the dawn.
  4. Like
    3bmom got a reaction from JuliaFaith in Feeling bad for those parents in California.   
    OMG Those articles give me chills.
    Because GMO crops have created super weeds the FDA has allowed more pesticides on our food even approving a HUGE increase this last spring without further testing. The fact they are wine growers and we are experiencing drought with more residues makes sense. I just found out they also spray wheat for faster drying...celiac anyone!
    On the table for approval is a new pesticide with Agent Orange ingredients. Think Viet Nam. Ag has deemed this essential for super weeds. What is essential for our children!
    I grew up in Washington state and raspberries and blackberries were like weeds taking over woods and empty lots. Did they ever have bug enemies or is the soil now so depleted they are weak and vulnerable for attack.
  5. Like
    3bmom reacted to rowingmom in Hey Lymies - anyone with shoulder pain?   
    @ 3bmom - There are two schools of thought on supplementation.
    1) If the parasites (bacteria) require a nutrient does supplementing simply go straight to the infection and strengthen it;
    2) or does supplementation allow your body access to nutrients that would otherwise be lost to parasitism and aid in healing. This would ultimately restore function lost to deficiency.
    Many LLMD's suggest reducing nutrient intake in a bid to weaken bacteria. Ours however, said to supplement, especially magnesium.
    And so does Buhner. He says that parasite's will keep depleating nutrients until you are no longer functional (or worse). They don't care if you are healthy, or sick and weakened by deficiency, they will continue to take until you grow cold. The point is to bring the immune system (I'm seriously thinking gut here) back to a point where your body can live in equilibrium with the parasites. You can't kill them all, so you might as well feed them, and yourself, and keep everyone happy.
    DD doesn't take glucosamine because she doesn't have joint involvement, however I have been for a while and have noticed reduced joint pain (non-existant), however my joints have taken up cracking like crazy, especially my knees when I squat. So I'm not sure if it's actually helping, sounds funny though.
    Supplementing magnesium has helped both of us and significantly decreased my heart palpitations. DD does wonderfully with epsom salt baths (magnesium sulfate) to increase both magnesium and sulfate, however if you have a CBS mutation you might have problems with it. It wouldn't hurt to try and see what happens (I love experimenting on myself (n=1) - it's the only way to learn). And I'm not scared to do it (go low and slow), because there is no doctor out there who is going to tell me for sure what works for me. If it doesn't work, it doesn't work.
    DD had a bad allergic reaction to bactrim (sulpha drug) but is fine with sulfate and other sulphers (garlic, cruciferous vegetables). Some people can't handle any of it.
  6. Like
    3bmom reacted to sf_mom in Strange response to ADHD med   
    Have you checked her for mold? As you may remember we see the same ART Dr. as well as an LLMD in CA.
    Our older DS's C4As were checked initially and completely normal at 1,000. We then did Shoemaker panel and MSH was a little low and one other marker was a little high but nothing that screamed like he had a mold issue. He never came up for mold via ART but did for Cholestyramine for a brief period of one month during treatment and there was no visible mold in our home. We had touched every surface when we moved into our home five years ago with new carpets, paint, floor refinishing, tile cleaning and resurfacing, fixed all potential water issues, etc. It took a tree falling on our home this past summer to discover both white and black mold behind the walls. We then tested for mold via the Real Time Labs Urine Mycotoxin test. Our older DS's results were 6.98 for Trichothecene 'Black Mold' with a reference range of .18 to .2 and it was the same black mold found in our home after tree fell.
    We had ongoing yeast/fungal issues with all our kids, still do. Mold/yeast can definitely cause AD/HD symptoms. I posted a this particular article yesterday on mold/biotoxin's and thought it might be helpful to read.
    Our older son has never been better since ongoing detox for mold. Initial detox'ing can make symptoms worse.
  7. Like
    3bmom reacted to rowingmom in Mother is the Trigger   
    You may be a trigger, but so are other infectious people your children come in contact with. The real problem is not your infection (if your body is handling it properly and you are asymptomatic), but your children's overactive response to infectious triggers in general.
    If both you and your children have autoimmune problems it could be a combination of genetic susceptability and various environmental insults (pesticides, heavy metals (esp in vaccinations), EMFs) on all of your immune systems.
  8. Like
    3bmom got a reaction from rowingmom in Feeling bad for those parents in California.   
    I hope they get answers too and maybe it will bring together ALL pediatric Drs so they can compare notes and see we are loosing a generation of children to a myriad of health issues.
  9. Like
    3bmom reacted to MomWithOCDSon in Zinc Deficiency and OCD/PANDAS   
    We started out with just the little zinc "melts," Zicam style. We thought DS was coming down with a cold so suggested he start taking those, and coincidentally, he reported a better ability to focus while that was going on.
    Thereafter, we have used a SolaRay product called OptiZinc which supposedly contains the most bio-available form of the mineral. We get it at our local Vitamin Shoppe.
  10. Like
    3bmom reacted to SSS in Zinc Deficiency and OCD/PANDAS   
    Before PANS when I was doing 'biomed healing' with my daughter,
    Zinc supplementation was very common,
    a relation to mercury depleting zinc in the body.
    (Google mercury and zinc deficient / autism)
    Recently, H pylori has been on my radar
    (awaiting test results)
    and I've been reading about
    Zinc carnosine helps heal a leaky gut/ repair the membrane.
    So of course I ordered some,
    being the supplement junky I am ;-)
  11. Like
    3bmom reacted to rowingmom in Hey Lymies - anyone with shoulder pain?   
    The fluroquinolones can cause tendonitis and tendon rupture.
  12. Like
    3bmom reacted to nicklemama in Feeling bad for those parents in California.   
    Polio variant? I'm hoping they are saying its not polio just because those children have been vaccinated against polio. I read something interesting yesterday that talks about the original polio outbreaks and its relationship to an agricultural herbicide for mold. Very common. My lyme brain won't allow me to recall it right now, lol. It won't surprise me if its a polio variant that has mutated in the face of a chemical. Polio is/was a harmless enterovirus that mutated.
  13. Like
    3bmom got a reaction from JuliaFaith in Round Up Glyphosates and GMO on Gut Bacteria   
    Glyphhosate kills weeds by chelating (holding ) on to minerals till the plant dies. This is due to the disruption of the Shikamate Pathway. Humans don't have this pathway but our gut bacteria does. So if our gut bacteria is killed off, where does that leave our immune system?
  14. Like
    3bmom got a reaction from JuliaFaith in Round Up Glyphosates and GMO on Gut Bacteria   
    I agree! Met with an expert on Glyphosate over the weekend. Didn't know they use pesticides to speed drying times!
    Most important thing I learned in addition to chelation of Magnesium in our bodies it has a profound effect on chelating zinc. They believe this causes zinc deficiency in humans and is responsible for the difficulty in conceiving since zinc strengthens sperm. They question the drop in teenage pregnancies is more likely due to pesticides than abstinence.
    I thought I read somewhere, maybe here that low zinc may cause Anorexia and OCD.
    Any thoughts?
  15. Like
    3bmom reacted to searching_for_help in Hey Lymies - anyone with shoulder pain?   
    This article is about how researchers in a Danish study found that when a disc becomes herniated, bacteria can enter and cause an infection. Some patients have been successfully treated with abx. The article is specifically about chronic lower back pain and herniated discs, but I have to wonder if the same thing can't happen in weakened joints. Hmmm...
  16. Like
    3bmom got a reaction from croatianmum in EBV and HHV6 - anything we can do about it?   
    I am so sorry they are not supporting you. I think this is all so new, as in last 20 years since food became altered that Drs can't think out of the box or are even curious. The hospital didn't help us either, not even blood work to prove me wrong and it was the same hospital that 6 years earlier video taped him for learning purposes and were amazed that an antibiotic for an ear infection made severe OCD disappear in a week!
    I was lucky to have an earlier pediatrician put him on a steroid till I found his present Dr.. Valacyclovir isn't a potent drug and is used here widely for cold sores on the mouth, genital herpes, and shingles. I have always wondered about any relation to the chicken pox vaccine and HHV-6. If I was a Dr I wold be so curious just to see "What If".
    I agree with Rowingmom to get Buhners book. Also a post to asking what others have used for an anti-viral, dose, weight and reactions. I think grapefruit seed extract and oregonal are beneficial. I have recently met an alternative massage person who uses essential oils along the spine to absorb into the body. It is called Raindrop Therapy. Our skin is our biggest organ so the fact you have a rash present means the body is overloaded and trying to expel toxins, virus, bacteria etc.
    Another thought from a completely different angle. My DS second flare at age 9 was just severe tics to the point he stopped talking for 6 weeks. My Dr at the time did the wrong blood work and than told me I was beyond their scope, and savvy enough to figure it out. Out of desperation I took him to an OCD therapist and found out the majority of tics were actually compulsions. There was an irrational thought process behind them even though it didn't present to me like that and he wasn't able to articulate it. With her expertise he was changing his behavior patterns/tics and started talking quickly after.
    I would also go off of Dairy, we are ok with goat, gluten, soy and corn. They are all inflammatory and each layer you remove should get you some improvement.
    I send you hugs and hang in there.
  17. Like
    3bmom got a reaction from rowingmom in PANDAS and Strep outbreak in Duxbury Mass. School and State Involved   
    Yes it is! I would love them to use Dr James Greenblatt from Qannie47's post "well this is encouraging". He does a simple urine test for gut issues. It would be so fascinating to see that along with blood work for infections. A perfect opportunity to shed some light for us all instead of disguising it as Mass Hysteria like the poor girls in Leroy.
  18. Like
    3bmom got a reaction from croatianmum in EBV and HHV6 - anything we can do about it?   
    That is Rowingmoms informative post. Good Luck.
  19. Like
    3bmom got a reaction from croatianmum in EBV and HHV6 - anything we can do about it?   
    Antibiotics will not help HHV-6 or EBV since it is viral. I believe herbs should always be a first choice but we had HHV-6 so high unfortunately it didn't help or maybe just not quick enough since we were in crisis with hospitalization.
    Valacyclovir which is an antiviral would of kept us out of the hospital and we had improvement in less than 36 hours. We had eating and behavior issues that quickly dissipated. He still takes 1G 3x/day. He has been on that dose since 11, 2 years. His titers went from 16x higher to normal.
    Our Dr said this virus is usually dormant within us and is activated by a dysfunctional immune system. I have done extensive research into chemicals and pesticides, along with genetically altered food in our food system and abroad.
    Go organic and stay away from American fast food.
    Rowing mom has excellent advice under another recent post about the gut and behavior.
    On an interesting note I just had shingles in January which is a sign of a very low functioning immune system. My Dr gave me same dose of Valcyclovir as my DS. I was taking it but the rash continued to spread so I combined it with my chinese herbs and it stopped in its tracks with no blistering. The best benefit...my foggy brain is clear!
  20. Like
    3bmom reacted to rowingmom in Well this is encouraging....   
    There are a few posts in this blog about "weeding, seeding and feeding" the gut to address SIBO with Soil Based Organisms and resistant starch/psyllium. The comment sections are informative as well.
    We started this protocol a couple of weeks ago after DD's yeast flare. So far, so good - itching and ticcing have resolved and the dark circles under her eyes are almost gone. DD is taking a rotation of probiotics, culturelle, align, RenewLife Ultimate Flora, PrescriptAssist, with 2 of the 4 mentioned daily; the most potent ones with potato starch/psyllium. So far we only take one dose of resistant starch/day, I don't want to overdo it.
    There are seven steps in all:
    Dr. BG's 7-Steps Paleo* Gastro IQ SIBO Protocol
    HOW TO CURE SIBO, SMALL BOWEL INTESTINAL OVERGROWTH (with major contributions from Tim/Richard/Marie/FTA) 1. Fermented veggies made the ancient way with organic dirt-covered vegetables, ex. kraut, kvass, kim chee, kefir, etc. Read Sandor Katz.

    2. Ancient heirloom potatoes, tubers, roots that are low glycemic index (or high if good insulin sensitivity) and ancient heirloom grains, legumes, lentils/dal that are low glycemic index (or high if good insulin sensitivity), prepared the ancient way (soaked, fermented, etc)

    3. Soil-based probiotic 1-2 daily if not severely immune compromised (Bacillus licheniformis, Clostridium butyricum, etc)

    4. Raw PS (potato starch) 1-3 Tbs + Psyllium (if not allergic) 1 Tbs + high ORAC green powder (I like amazing grass, LOL) in 2 cups plenty of water

    5. Exercise low-moderate intensity one hour daily continuously (10,000 steps) to move the gut/peristalsis and overcome broken myenteric musculo-neuro junctions

    6. Avoid allergenic foods (corn, soy, gluten/wheat, dairy, nuts, egg whites, etc). Avoid GMO products and livestock/poultry fed GMO crops (corn, soy, etc).

    7. Heal hormones and immunity -- take adrenal support, liver support, antioxidants etc (I use biocurcumin and berberine to combine with anti-microbials/anti-parasitics). This is particularly imperative for those with reactive hypoglycemia and BG crashes when they go longer than 3-4 hours between meals.

    8. If the above fail, then you have more fastidious overgrowths and require 2-3 rounds of anti-parasitics/anti-microbials/anti-fungals. See what worked for my family and I HERE. If the above still does not fix SIBO, then consider mercury toxicity. Mercury saturates and kills microvilli in the small intestines and also disables enzymes including digestive enzymes.

    Here is the first step, the others follow:
  21. Like
    3bmom got a reaction from rowingmom in autism and Dr. L   
    We see an Autism Dr in LA for PANDAS. I don't know of any PANDAS Drs in the area. He says PANDAS, Autism and Alzheimer is all the same thing Neuro Immune Dysfunction from diet/food and infections. I believe this either causes or is in conjunction with detoxifying issues. I see it as a Venn Diagram with overlaps because we have been able to get close to baseline, 95% in between flares.
    I think maybe the difference is WHERE the brain is most inflamed and all should be treated the same and not get hung up on the labels. If you read the original parameters for Autism this generation of kids would not fit the label but the label does unfortunately stop the majority of parents (not here on the forum) from looking for answers since they have been told it is "Genetic". In fact it is scientifically impossible to have dramatic increases in the population of a genetic disorder.
  22. Like
    3bmom got a reaction from philamom in PANDAS and Strep outbreak in Duxbury Mass. School and State Involved   
    Very Glad to see the school district and the state is getting involved. Anybody here from the area and going to the meeting tonight?
  23. Like
    3bmom reacted to rowingmom in Citric acid and detox   
    Just found an article that perhaps explains the reasoning behind the use of lemon juice (citric acid) for detox:
    The administration of citric acid (1-2 g/kg) attenuated LPS-induced elevations in brain MDA, nitrite, TNF-α, GPx, and PON1 activity. In the liver, nitrite was decreased by 1 g/kg citric acid. GPx activity was increased, while PON1 activity was decreased by citric acid. The LPS-induced liver injury, DNA fragmentation, serum transaminase elevations, caspase-3, and inducible nitric oxide synthase expression were attenuated by 1-2 g/kg citric acid....Thus in this model of systemic inflammation, citric acid (1-2 g/kg) decreased brain lipid peroxidation and inflammation, liver damage, and DNA fragmentation.
  24. Like
    3bmom got a reaction from JuliaFaith in Autoimmune Encephalitis   
    Powwow what is TX? How do I find the movie you are talking about?
    Our DS was more severe like "Brain on Fire" and his Dr said AE. On PANDAS radio there is a good discussion between Dr. T and Susan Callahan. It was our third flare in 6 years. The hospital didn't help, they wouldn't even do blood work for strep.
    I wonder in the book if the bed bugs had anything to do with it. A friend was talking about a coworker who had gotten "strange" after she had a bed bug incident. She said she is paranoid, wears the same clothes etc.
    Our Immunologist says the innate immune system is becoming dysfunctional and we no longer can fight infections. These infections keep the immune system so busy it has to store toxins for a later day. The accumulation of toxins wreaks havoc based on our genetics.
    We have tripled the amount of pesticide in our food supply without further testing. In March they approved even more along with genetically altering the DNA of food. Our bodies see this as something foreign and begins the cytokine cascade.
    These issues were not as prevalent in the early 70's before glyphospate pesticide and the neonicotinoids pesticide which they believe is responsible for the drastic loss of bees. The neonics are neurotoxins that create confusion in the bees. They are also endocrine disrupters.
    I am sure this is another layer compromising our children's health.
    When in Hawaii at their Volcanos you are warned not to get out of the car if you are elderly or a small child because you can be vulnerable to the toxic gasses. Our elderly are losing their brain function with Alzheimers as rapidly as our kids. I don't think it is a coincidence.
  25. Like
    3bmom reacted to SSS in IVIG - really worth it?   
    ** Is she gluten and dairy free 100% ?
    Has she tried this?
    Personally, I recently went 'Paleo' diet for my gut issues (no grains, no dairy, no legumes) it's meat, veggies, fruit, nuts (except peanuts)
    And I cannot believe how much better I feel, my mood has been lifted,
    sleeping better, and hungry (eating.) I was 100% gluten free, but it wasn't enough- I found myself just eating gluten free bread products,
    and not getting enough fat in my diet. I added teaspoons of coconut oil in my hot drinks too.
    With a history of eating disorders for your daughter, tho, not sure how food changes go over.
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