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  1. Like
    3bmom got a reaction from JenniferG in Several Positive R/S, Negative 48h   
    Found the article!
  2. Like
    3bmom got a reaction from searching_for_help in Myco P without a cough? Ever?   
    My Dr only tested IGG titers but they were so high he said I must be IGM positive. My DS IGG titers were 5x higher. Our Dr. treats any titers over 4 fold. He says this is how he was trained in the 70's. He said the CDC changed the rules in the 80's and I have met Dr.'s who say they don't mean anything. How come as the titers are treated they drop and also we have a drop in behavior! Think this is a major clue being ignored in Autism! I think PANDAS/PANS is a Venn Diagram with Autism.
  3. Like
    3bmom reacted to sf_mom in Sleeping too much/poor appetite   
    I think you can request test kit directly from SpectraCell and have your Pediatrician or similar sign off on requests. It is approximately $275 and then we file with insurance for reimbursement. Our LLMD runs the tests for us (has kits in his lab) but all our Dr.'s now use them to track vitamin and mineral levels.
  4. Like
    3bmom reacted to Rachel in New treatment plan with 23 and Me test results   
    Hi Everyone,
    I wanted to share some more resources that I have found online. I don't know if anyone has heard of Dr. Myhill. She works with CFS patients and also helps them with methylation problems. She has a basic jump start program to get the methylation process started but tells you to start low and slow. Her old book is online. I will post it and her lastest article on Methylation. She also mentions Dr. Amy in her article and to check out her sites as well. I have just started my son on one new supplement, B-Right. In another week or two, I will start him on 500mcg of Methycobalamin once a day and then gradually up the dosage week by week. I will not be giving it on days that my son is taking the methyl-B 12 shot. Eventually I will add in the Phosphatidyl Serine. Dr. Myhill does have a new book out and I will also be order it to read. Here is the article and her old book. Happy reading.
  5. Like
    3bmom reacted to searching_for_help in For those on long term abx   
    Yes, my dd has yeast and clostridia (NOT diff.) issues. Honestly, with all the processed foods, abx, even things like Splenda affecting good gut bacteria, I doubt if there are many Americans with "good guts".
    We treat with Nystatin and probiotics. We use several different probiotics. Culturelle and Jarrow's Sacch. Boulardii for the clostridia. Higher amounts with more strains for the other issues. Since she is currently on an abx for mycoP, I space it out so the abx doesn't kill the probiotic. For instance, I'll give her the second dose of abx around 7 pm, and give her a probiotic around 10 pm, in hopes that the probiotic will be helping replenish during the night.
    IF she didn't have restrictive eating issues, I'd make Kefir shakes and add other fermented foods in, but she won't eat them anymore. She used to drink Kefir shakes - with organic yogurt, Kefir (strawberry or pomegrate flavored), banana, frozen strawberries, a bit of stevia to sweeten it and the ice. Throw it all in a blender, and it's very yummy.
    Do the probiotics do any good? Beats me... but I figure it's worth a try. We haven't retested to see if it is helping. So many test... so little money left!
  6. Like
    3bmom reacted to T_Anna in Cannaboid OIl-RESULTS!   
    I haven't been here for a while, but wanted to share that yesterday (yes, only yesterday) we made some progress. DS15 who suffers with severe OCD, is homebound, wont bathe in a shower or change clothing voluntarily, wash hair etc. He took 5 doses of CBD Hemp Oil and yesterday and today went to the bathroom without rituals AND took a shower.
    For those who don't remember our story, DS fell off the cliff December 2012. Stopped attending school, functioning etc.
    Abx, Anti virals, steroids, 8 HD IVIGS, PEX, short trial of CellCept.
    He has been coming back in teeny tiny steps, but still didnt shower, leave the house, take less than 15 hours in the bathroom.....
    Yesterday he said he's had enough of OCD ruling his life. He has made an effort in the past 24 hours to plan out his recovery.
    Our last IVIG was 3/17 and there is a chance that helped. BUT, we really think it's the CBD, since he has never been this relaxed/focused.
    We bought it legally through Bluebird-botanicals.com it is CBD Hemp oil, I put 25 drops in a capsule and he gets it 2x a day.
    Just saw I misspelled Oil, well it's just because I wanted to rush and share the news.
  7. Like
    3bmom got a reaction from dasu in Inflammation and Neurology Pathways   
    This is one of the best articles I have read summing up the medical issues wreaking havoc on our children neurologically. It also goes hand in hand with the articles posted here in regards to missing gut biomes found in Autism, (ASU article) and the good strep bacteria in the throat, (NIH article) in the prevention of strep for PANDAS families.
    The author also talks about Gluten and Dairy as inflammatory contributors but not necessarily from an allergic response.
    The article gives me so much hope that we are finding answers.
  8. Like
    3bmom got a reaction from MomWithOCDSon in Inflammation and Neurology Pathways   
    This is one of the best articles I have read summing up the medical issues wreaking havoc on our children neurologically. It also goes hand in hand with the articles posted here in regards to missing gut biomes found in Autism, (ASU article) and the good strep bacteria in the throat, (NIH article) in the prevention of strep for PANDAS families.
    The author also talks about Gluten and Dairy as inflammatory contributors but not necessarily from an allergic response.
    The article gives me so much hope that we are finding answers.
  9. Like
    3bmom got a reaction from JuliaFaith in Anyone do a fecal matter transplant?   
    I have not tried this but am very curious. A gastro nurse I met at a charity dinner, (what a topic) told me they have great success with this for C-Diff. To me it seems logical that it would also help behaviors because of the brain-gut connection.
    The pesticide Round-up heavily sprayed on our food, especially GMO's, kills weeds via the same pathway as our gut microbes. It also chelates essential minerals so the weeds die. We get a double whammy, less good bacteria and less minerals to keep infections away.
  10. Like
    3bmom reacted to rowingmom in Benefits of going Gluten Free /Relief from Symptoms   
    Here is number 1/7 videos produced by Loren Cordain (Paleo Diet) describing the connection between diet and the autoimmune disease MS. He talks about leaky gut, lectins, adjuvants and inflammation in this series:
  11. Like
    3bmom reacted to JuliaFaith in Mold Toxicity Information - slides from doctor presentation   
    Mold was an issue with my son and detoxing from it and remediating our house was definitely part of the solution for his healing. We did almost all of these tests and they supported our doctors' muscle-testing findings that mold was an issue. Love this chart because of the explanation along side each test. Below this page is the entire slide show on the presentation:

  12. Like
    3bmom got a reaction from rowingmom in Artifiicial Dyes & Hyperactivity   
    Great article!
    I figured out dyes were an issue for my oldest son 13 years ago and was the "joke of the neighborhood" when a mom constantly brought out her Costco container of red licorice.
    A food petition by blogger "Food Babe" might get some changes. She has tackled with success chemicals in Kraft Mac n Cheese, flame retardant in Gatorade, yoga mat chemicals in Subway sandwich bread, and hidden MSG in pizza. Mexico does not have HFCS in their soda. No wonder American kids have so many learning disabilities and behavior labels.
    For me it was blind trust in our FDA. After learning huge increases of pesticides on GMO crops was approved without testing I woke up and started researching and changing the way my family eats.
    Our power is in our spending. An 11% decrease in profits will make a company change its product. Mothers need to unite!
  13. Like
    3bmom reacted to rowingmom in Mycoplasma P. Treatment   
    In addition to any antibiotics you may be using in the future to treat Myco, according to Stephen Buhner, the symptoms of mycoplasma can be very much the result of nutritional deficiencies caused by the parasitic tendancies of those organisms. Make sure you are using optimum nutrition as an adjunct:
  14. Like
    3bmom reacted to rowingmom in I have Lyme and PANDAS - which doesn't make sense   
    Buhner's take on this is that these infections have always been present, and that if a person's immune system is functioning adequately the infections will remain benign. It is when the immune system is compromised in some way that the infections can come to the forefront. Many of these bacteria can be readily passed between members of families or people who come into close contact or exchange bodily fluid. Borrelia is a spirochete, similar to syphilus and can be passed to partners and through milk from an infected mother.
    He says that these bacteria act parasitically, producing the cytokine cascades they do in order to destroy tissue and release the nutrients they require. That the symptoms caused by infection are either bacterial endotoxins produced by die-off or the nutritional deficiencies that the infections produce. He believes that by addressing the various cytokine cascades with the proper antibacterial/anti-inflammatory herbs will decrease tissue damage thereby decreasing pain, while also making nutrients less available to the parasites.
    Immune systems can be compromised in many ways.
    Metals used as adjuvents and preservatives in vaccinations. When I was growing up I had 8. Children are now routinely receiving >40.
    Pesticides and GMOs target not only the guts of insect pests, but also similar metabolic systems in our own probiotic gut bacteria. Good gut bacteria are reduced in number, gut pathogens are allowed to grow and the immune system (a large part of which resides in the gut), and the proper functioning of our gut bacteria is destroyed.
    Nutritional deficiencies are rampant. Grains to the extent we are told to eat them these days, we never available to our ancestors. They ate omega 3 replete fats from grazed livestock, we eat those fed with GMO high inflammatory omega 6 corn and soy beans. Most people only eat a couple of servings of vegetables a day.
    Terry Wahls is a medical doctor who cured herself from many of the symptoms of MS, which by some is believed to be an autoimmune condition, with proper organic ancestral diet.
    Others have recovered from autoimmune symptoms addressing the issue of pathogenic gut bacteria and small intestine bacteria/fungus overgrowth.
  15. Like
    3bmom reacted to rowingmom in Magnesium citrate-stimulating?   
    We find that for DD and myself 300 mg of magnesium citrate calms us down at night and makes us sleepy.
    However for my son it actually brought on a 24 hour migrane within 15 minutes. He didn't mention sleepiness. He only gets 1 migrane every year or so and was definately able to associate the larger dose of mag citrate with the headache.
    For my husband on the other hand, migranes are caused by calcium citrate supplementation.
    If you are seeing hyperness associated with citrate, you can try mag taurate (our LLMD likes this one) or mag malate (people with CFS like this as it seems to help with muscle pain) or mag glycinate.
  16. Like
    3bmom got a reaction from rowingmom in Seizures   
    If Neuro is open he can prescribe antibiotics and antivirals and should. Low and slow. Our Dr says titers over 4 fold should always be addressed.
    She may want a PANDAS Dr.. I have an Autisim Dr who says it all is low grade encephalitis due to immune dysfunction. We have been on Valcyclovir for 2 years. Our titers dropped from a high of 16X normal to 0 in 6 months for HHV-6. This virus has been linked with seizures . Check the recent posts under Valcyclovir.
    From another angle our local news covered a story of 2 families moving to Colorado for legal marijuana. Their children went from 100 seizures a day to 2. They use a strain called "Charlottes Web" which is high in canneboid ,( CBD ) and little THC the psychological part. It is in oil form.
    I know nothing about pot except my college age son has a legal medical card for dyslexia (on his own) and is getting A's and B's in difficult classes like History with lots of reading. He says there is research to its effectiveness but pharmaceuticals are blocking it because they can't make any money and are trying to duplicate it synthetically.
    I think it would be worth looking into it. Just like supplements you would need to be careful about quality. Keep me posted.
  17. Like
    3bmom reacted to cara615 in Our new PANDAS Doctor!   
    So we finally got in to see Dr. Bradstreet in Buford, GA yesterday. AMAZING experience. He is a genius. the man knows so much about the immune system that it was baffling. I needed for him to dumb down a lot of what he was getting into because it was over my head. He has a wonderfully kind personality, no God complex and he took to ds immediately and vice versa. He even gave me his cell #!!!
    We went over all the testing that I wanted to do and we prioritized based on what he thought would give us the most actionable information. We did and OAT in the office and will be giving blood next week for: Lyme, MycoP, H. Pylori, Immune pane (IgG, IgA, IgM, etc) and a cunningham test. He feels that he will be able to tell based on cunningham test if ds would benefit from IVIG.
    We are also testing nagalase which is an indicator of low macrophages and if they are low then we will be getting GcMAF. He gav eus Vit D3 and Krill oil immediately and sent me to a website to buy Luteolin,Quercitin and Rutin in this one capsule that is supposed to boost Mast Cells.
    He feels that DS is triggered by Strep as well as allergies to food and environment. He feel positive about ds's outcome. I guess the tests will tell us more as far as any other infections.
    I feel like we are FINALLY in good hands and the great thing is that he has treated my friend's son with fantastic results.
    Right now ds has come off a flare triggered by brother's strep and seasonal allergies. Allegra has helped us tremendously.
    Bradstreet also wants us to go on prophylactic abx because he thinks everyday is too much. However, I don't want to change the protocol until he is tic free. I am so afraid of a regression once off the abx!!!!!
    All in all it was a very positive visit and I am feeling hopeful.
  18. Like
    3bmom got a reaction from JuliaFaith in Intrusive Thoughts, Depression, Anxiety   
    Don't forget food is a biggie. When sick we all tend towards comfort food because of the morphine effect except our kids will rebound with worse symptoms. I don't know where you live but with all the bad weather I would also check for mold. It also weakens the immune system allowing strep to take hold along with some molds being a neurotoxin. Hugs to you...hang in there.
  19. Like
    3bmom got a reaction from JuliaFaith in What supplements work best for inflammation?   
    What type of shampoo are you using? Organic will keep chemicals away. Showers open up our skin our largest organ for more absorption. Maybe a shower filter.
    Tea tree oil may be good or bad. If you have Lyme or co-infections it may exacerbate the pathogens causing pain.
  20. Like
    3bmom reacted to rowingmom in Roll Call/ For all with 1st (known Exacerbation) after a LIVE flumist?   
    The meningococcal and tetanus vaccines are killed vaccines.
    I found this posted by Royal Free Hampsted contradicting the use of live attenuated vaccinations in immunosuppressed patients. I guess we don't know if our children have immune suppression until they adversely react to a live vaccination.
    If your immune system is suppressed because of the medicines you are
    taking, you must avoid live vaccines.
    Immunosuppressed patients can safely receive the following vaccinations (which are not live):
    Polio (ONLY inactivated named-patient product from RFH pharmacy)
    Haemophilius influenza (Hib)
    Hepatitis A
    Hepatitis B
    Mantoux test
    Meningococcal A
    Meningococcal C
    Typhoid (injection)
    Typhoid/Hep A combination (injection)
    Immunosuppressed patients should not receive the following vaccines
    (because they are live):
    Polio (oral)
    Yellow fever
    Typhoid (oral)
  21. Like
    3bmom got a reaction from rowingmom in Valcyclovir   
    mamasluvyou, thanks for the info.
    flmom, We did one month of diet, than slowly started Valacyclovir HCL at 1 gram for a week, than 2 pills, than 3/day. My DS was 11 and 1251lbs at the time. We didn't see die off with him but we did with my father-in-law who appeared more confused but than much improved. One step back two steps forward.
    We were lucky and saw some improvement right away but his flare was horrific. Everyday he got better and became more rational. Because our Dr goes slow and one thing at a time, we didn't lose some serious compulsions till antibiotic was added a month later. The combo was truly what he needed.
    The good news for evidence based medicine is his titers moved from 16x normal to 0 in 6 months. I think that is important since I had a Dr say titers don't mean anything. Our Dr. is older and in medical school he said they were taught treat anything 4x higher.
    My middle child when age two got cold sores 4x a week and was put on a liquid form of Valacyclovir for 7 years. This was thru a large hospital and many tests. I am trying to get his records. Always wondered if he would of had Autism, since it was after his vaccination, and he is also my dyslexic son. I definitely wonder about that gene.
    I will keep you in my prayers. Please keep me posted.
  22. Like
    3bmom got a reaction from rowingmom in Sac B .... Fatal?   
    I find it interesting the increase since the 90's. Also all patients eating the standard American diet are consuming large amount of antibiotics, since 80% of all antibiotics in US are used in food sources. Round-Up is patented as an antibiotic and it kills off intestinal flora thru their shikimate pathway. What happens when this flora gets knocked out depends on your individual innate immune system. That may be why there is such a variance of infections among our kids and the difficulty in treating them.
  23. Like
    3bmom got a reaction from chubbermommy in Zinc Deficiency and OCD/PANDAS   
    I went to a support group for woman with children that have health issues. They discussed that Round-UP and GMO's not only chelate magnesium creating deficiencies but also zinc and believe that zinc supports strong sperm and there may be a link to lower zinc and difficulty conceiving.
    Isn't low zinc implicated in Anorexia and OCD? What are your thoughts?
    Our Dr doesn't supplement. I understand he has seen benefits and harm just like some here have both positive and negative reactions. I am sure it needs to be based on your 23 and me but thought I would ask.
  24. Like
    3bmom reacted to airial95 in Mother is the Trigger   
    My husband and I always tested negative for strep when we would get tested (ad nauseum) over the years. When we saw Dr. B for the first time, he ordered full labs on all family members and lo and behold, my husbands titers were through the roof. He was treated, and sure enough, my son saw his chronic re-curring strep infections start to resolve.
    Another place to look in the family is the pets - they too can carry things that trigger our children.
  25. Like
    3bmom reacted to rowingmom in motrin junkies   
    We are using knotweed 3x daily and meriva 2x daily (morning and evening).
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