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    TeamTyrion reacted to LNN in Tourettes and Histamine...and methylation   
    Toaks - I don't have any experience with histadine but Walsh/Pfeiffer & co. advise using folinic acid, B12 (probably hydroxy form for overmethylators) and niacin to try to increase histamine. They advise avoiding Vitamin C, since C is an antihistamine. But in cold/flu season with a PANS kid, I'm still going to give C. Just starting my experiment of using these to see if the tic improves. Too soon to tell yet.
  2. Like
    TeamTyrion reacted to Pippi in We eliminated tics with 100% organic diet!   
    We are vegetarian, so I don't have any experience with organics meats. That's terrible that they are spraying them with gmo during processing, how frustrating!
    We have found that we thought that she was sensitive to certain foods. We thought that she couldn't have dairy because she seemed sensitive. We also thought for a while that it was the gluten. Soy seemed to cause her to react. What we have found, is that it is just the pesticides, but not the food. She is so severely sensitive to pesticides, that even if she has a small exposure, she will tic. Fruit of all kinds is a big trigger, especially apples. She also has a huge reaction to potatoes that are non-organic. This includes potato flour in bread for instance. Corn is also a huge trigger. Nuts, as well.
    Now she has no food restrictions at all. She can eat anything as long as it is 100% organic. If she accidentally eats anything that is not organic, especially fruit or potatoes, she will tic until it leaves her system, about two weeks. Some foods only cause her tics for about three days. Now that we have been extremely strict about her diet for several months, she seems to be healing and her body reacts less strongly when exposed to pesticides. Last summer her tics were constant and complex. The longest time between tics was less than two seconds. It was terrible. When we were eating mostly organic, we saw very little change. It wasn't until we went 100% until we actually saw a huge difference. It took a long time to realize what things we kept accidentally eating without realizing. Once we bought organic spices, and organic vitamins, etc, we saw that the tics completely went away.
    What I realize is that since certain foods are treated with more pesticides than others, we started to think that it was those particular foods that were the trigger. What we found was that it was the pesticides themselves. She eats any kind of fruits, nuts, dairy, corn, eggs, vegetables, etc without reaction.
    Also, we noticed a huge difference in her impulse control with no pesticides! I hope this helps!
  3. Like
    TeamTyrion reacted to Califamily in This has been a BIG winner for us....I think :)   
    HI Everyone,
    I wanted to share something that I believe has really helped my teenage son. During a flare he gets intrusive thoughts (and in a non-functioning fog), can't sleep, urinates frequently and has one tic. Out of a flare, he doesn't have these symptoms. We just finished IVIG about 8 weeks ago (and he had a 2 week flare in there). . Motrin and Tylenol (and to some extent the one time with did prednisone) don't seem to help during a flare ... I think those antibodies have reared their ugly heads and it takes 2-4 weeks to go down. However......good news and want to share it with you all
    However, we have always, always given fish oil but primarily an EPA heavy Nordic Natural fish oil. About 3-4 weeks ago, I switched to Nordic Naturals DHA heavy formulation based on this article (daily about 1.2 grams of DHA and .3 of EPA). I think there were a couple of times he was going to flare... and it felt like the DHA stopped the inflammation cold in its tracks!) Curious to hear if any of you had experience. I have a pandas doc who says that dha has been know to manage the inflammation in certain illnesses.
    Here is the article that initially got me thinking...it is basic, but I would say it has been a winner in our arsenal and wanted to share it with you all.... Of course this could be IVIG success to date (and who knows a big back regression may be forthcoming, but I am still thinking that DHA is a big find for us...Note it is the amount of DHA and that it is a higher ratio than EPA (3-1 vs. 1-3). Something about what it does with macrophages seems to strike a bell. I believe my son is more PANDAS vs. PANS. Thanks, Califamily
    Scientists show how DHA resolves inflammation Date: July 1, 2013 Source: Federation of American Societies for Experimental Biology Summary: Chronic inflammation is a major factor in problems from arthritis to cardiovascular disease, and DHA is known to help. New research in The FASEB Journal, explains why DHA is important in reducing inflammation, and provides an important lead to finding new drugs that will help bring people back to optimal health. Researchers found that macrophages use DHA to produce "maresins," which are the "switch" that turns inflammation off and switches on resolution.  
    The FASEB Journal, helps explain why DHA is important in reducing inflammation, and provides an important lead to finding new drugs that will help bring people back to optimal health. Specifically, researchers found that macrophages (a type of white blood cell) use DHA to produce "maresins," which serve as the "switch" that turns inflammation off and switches on resolution.
    "We hope that the results from this study will enable investigators to test the relevance of the maresin pathway in human disease," said Charles N. Serhan, Ph.D., a researcher involved in the work from the Brigham & Women's Hospital and Harvard Medical School in Boston, Mass. "Moreover, we hope to better understand resolution biology and its potential pharmacology so that we can enhance our ability to control unwanted inflammation and improve the quality of life."
    To make this discovery, Serhan and colleagues deconstructed the biosynthetic pathway for maresin biosynthesis and found that human macrophages are responsible for converting DHA to the novel epoxide intermediate "13S, 14S-epoxy-maresin." Then, they learned how to synthesize the molecule and found that maresins caused macrophages to change their "type" so they no longer caused inflammation (switching them from M1 to M2 phenotypes).
    "We've known for a long time that DHA tames inflammation, now, we learn exactly how DHA works: via new substances called maresins," said Gerald Weissmann, M.D., Editor-in-Chief of The FASEB Journal. "We encounter inflammation almost daily, but our body has ways of turning it off. This is an important step toward understanding exactly this happens. You're likely to be hearing a lot more about maresins if, or when, new therapies arise from this discovery."
  4. Like
    TeamTyrion reacted to rowingmom in Infections that don't have a treatment   
    The trouble with the first point is that often blood counts are not significantly out of the normal range, or at least not enough to raise a red flag with most doctors.
    Throughout treatment DD's lymph's were always a little low, but not much. Only at one time did her CBC indicate very low a WBC count (her sample was taken while she had the flu) and the LLMD called us in a panic, saying to stop all abx, thinking it was a drug reaction. It wasn't, it was the flu and all parameters returned to normal after she recovered. A very low CD57 has been our only indication that NK cells are being impacted, and most doctors don't test for that.
    I have gotten to the point in this ordeal that I believe I can do a better job at treating DD with herbs and other more natural treatments than I can with continued abx. Our LLMD knows little about herbs, and so after reading through Buhner's books at least once (a few more times would be good), consulting with his associate, and bringing aboard a ND versed in Traditional Chinese Medicine, I am comfortable with my decision to forgo conventional medical treatment. We continue with regular CBC/CMP testing through the LLMD.
    DD continues to heal, improving by adding herbs that Buhner suggests for viral/protozoan infections. We have never tested for viral infections and tested negative for babesia (a protozoa), but I have found another answer to our puzzle.
    When you run out of tests, or money or which ever comes first, you realize that you can only count on yourself and your ability/willingness to investigate alternative options. Some work - start slow, record every reaction - you may find a way out.
    There are so many potential explainations for the impacted immune systems of our children:
    High level EMFs disrupt our bodies electrical systems causing added stress.
    Pesticides destroy the gut symbionts responsible for much of our immune system.
    Vaccinations, well don't get me started on the potential causes for harm.
    It's not just infections causing our kids problems and it's not just abx/antivirals that are going to fix them. We have too look outside the allopathic box too.
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