Mayzoo
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Everything posted by Mayzoo
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We gave the varicella shot when she was 18 mo. We recently had lab work and the titers show normal range positive > 165. Kiddos is 1113 eleven years after the vaccine. Now we have to try to get her varicella antibodies down. I would check your child's titers before giving the vaccine anyway. If the titers are low, then do research and decide if you are comfortable trying it.
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Words I never thought I would be saying again, I have said three times in the last two days . "Honey, please turn the TV down." She has been listening to it so low that I could not understand most of what was said (and I am midly sound sensitive). She has required subtitles for some time now, and part of that is due to a love of reading and part may be she cannot really understand every either at the low levels she must listen to it at. She has been watching the TV between 6-8 volume but now she is listening to it between 12-15. Too loud for me, but I am thrilled none the less. How many parents are tickled pink to be telling their kiddos to turn something down .
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Plain curcumin is not bio-enhanced with piperine therefore you have to take very large quantities several times a day to attain benefits. Enhansa; however, is just one brand that is bio-enhanced. There are dozens of brands of bio-enhanced curcumin. Lee Silsby, I believe, was the the first to make bio-enhanced curcumin. The brand I use, according to the labels, is chemically identical to Enhasa. Enhansa is the brand name, and the others are generics.
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Anti-inflammatory diet....swapping resources thread
Mayzoo replied to Mayzoo's topic in PANS / PANDAS (Lyme included)
Kiddo loves peanut butter, and she takes 2-3 double strength Omega 3's with the high ratio. I also cook with coconut oil and olive oil instead of magarine now. I think she is doing pretty well on fat content....now I just need to make sure she is consuming more monounsaturated vs saturated. -
Several Positive R/S, Negative 48h
Mayzoo replied to JenniferG's topic in PANS / PANDAS (Lyme included)
They have to use different swaps for the rapid and for the culture. They likely did not get a good swab on the one they sent to the culture. -
Anti-inflammatory diet....swapping resources thread
Mayzoo replied to Mayzoo's topic in PANS / PANDAS (Lyme included)
Yeah, we are increasing our protien intake on the whole with beans and lean meats. We eat a lot of chicken now, and will be taking the skins off from now on. I will be able to get fish in maybe once a week. We love to grill too, and soups are definately a staple around here in the winter especially. Thanks! -
Anti-inflammatory diet....swapping resources thread
Mayzoo replied to Mayzoo's topic in PANS / PANDAS (Lyme included)
Tomatos are in the nightshade category, and are high alkaloids foods, which are hard to digest for some people. However, the plan I am trying to follow is by Dr. Weil and he recommends increasing tomato intake. When comparing resources, it can get very confusing. Do the research, then ultimatley, like everything else, you have to make the best choices you can. -
Here is the one I order. I have prime and the price it shows for me is $17.77 for 120 of the 750mg capsules. http://www.amazon.com/BioPerine-vegetarian-capsules-Pure-Anti-Inflammatory/dp/B00DUYYUNQ/ref=sr_1_4?s=hpc&ie=UTF8&qid=1398634148&sr=1-4&keywords=curcumin+%2B+pure I think it is in an "0" size capsule. It is bigger than a zithromax but smaller than augmentin. Yes, kiddo will swallow any size pill and several at a time actually.
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I am reading Herbal Antivirals by Stephen Harrod Buhner. Chinese Skullcap (not American Skullcap) is the number one listed herbal antiviral in this book. Numbers two thru seven are: Elder Ginger Houttuynia Isatis Licorice Lomatium
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Kiddo took another shower today. She acted a little goofy before getting in, mostly playiing and being silly. She never protested taking this shower. She did not get upset before, during or after the shower today. She even giggled in the shower and after she got out of the shower. I would love for showers to become fun again!! This would also mean her sound sensitivity is ramping down some as that was always the reason sited for being upset. She said the shower was too noisy, but she choose a shower over a bath anyway. She had not had her am dose of CBD yet prior to the shower either. So we are going off of stable reserves for that event .
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Nystatin made from Streptomyces N.
Mayzoo replied to JenniferG's topic in PANS / PANDAS (Lyme included)
At first, kiddo was seen only by her pedi. Now we are seen by a PANDAS/Autism immuno. She has been on daily zith since Jan 2012 and the immuno added Augmentin back around May 2013. I have the ability to do the R/S at home, but all the tests in Jan/Feb of 2012 were in a docs office. The pedi was not readily willing to even retest her after the 10 days of amox. They were reluctant to retest after the 10 days of augmentin. Now after almost 60 days positive, they want to test her every single time we come in, regardless LOL. The pedi went through a major ideological turn around caring for her as they had never heard of PANDAS. I would say keep the Enhansa at the does just below emotion upset for several weeks. Then try to inch it up a bit and see how it goes. If she tolerates it, stay there for several weeks and try to inch it up again. If she does not tolerate it, stay at the lower dose for a few more weeks. It sounds like you need to increase much slower than the recommendations. My kiddo has +/- on the A1298C. I have tried treating her for that, but she is again the odd gal out on this one too. I cannot see any changes, good or bad with treatment. Many seem to see great improvements when they treat. -
We choose Progressive's bio-enhansed curcumin. Now we use Pure's version. I saw positive anti-inflammatory response, for myself, within 3 days. The full benefit took a few weeks.
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Nystatin made from Streptomyces N.
Mayzoo replied to JenniferG's topic in PANS / PANDAS (Lyme included)
It took almost a month to see changes in my kiddo after starting Azith. She had + rapid strep for almost 60 days straight. We started with 10 days Amox, then 10 Days Augmentin, then almost 50 days Azith to finally get a negative rapid test. Enhansa, at the higher doses, also kills yeast along with the anti-inflammatory action. However, as you likely know, you have to build up to that slowly. -
Nystatin made from Streptomyces N.
Mayzoo replied to JenniferG's topic in PANS / PANDAS (Lyme included)
One way to rule Nystatin out, is to remove it from the daily meds for about a week. Do not remove anything else, or add anything else. At the end of the week, you should have a fair idea if Nystatin is a concern for your son or not. The link between streptomyces noursei vs streptococus was discussed pretty well here: http://latitudes.org/forums/index.php?showtopic=21901&hl=%2Bnystatin+%2Bstreptomyces#entry168879 If you have any questions after reading that thread, let me know and I hope LLM, I or someone else can help you. -
Anti-inflammatory diet....swapping resources thread
Mayzoo replied to Mayzoo's topic in PANS / PANDAS (Lyme included)
Just made my first batch of oat flour with slow cook oatmeal and a food processor. -
Please feel free to discuss anything anti-inflammatory diet related. We are just starting down this path, and I am doubtful hubby will conform to it, sooooo just kiddo and I. Of course She has PANDAS and autism along with a wheel barrow full of viruses. She is cronically fatigued right now. I have joint pains and headaches. Her and I take herbs for inflammation as well; she takes many more than I. I am stocking up on quinoa, 16 bean soup mixes, and various brown rices (see below for what I already grow). Anything else I should add that will not cost an arm and a leg? Who else here is trying it? Any stories to relate good/bad/indifferent? Is everyone in your house tring it, or just some? We are hoping to try it without costing a lot more than how we eat already, I just want to sub the money I spend on pastas, white rice, empty carbs, sugary stuff, etc for the good stuff. We don't eat pre-packaged much. Any experiences on cost? Information I have that I can share about: Foods/food growing methods I can share about--we grow organically: We already grow/process various sprouts, squash, cucumbers, tomatoes, okra, egg plant, sweet potatos (morning glory family--not nightshades), cantelope, watermelons, celery, collard greens, green peppers, banana peppers, strawberries, blackberries and various common culinary herbs. We have a small orchard that is still very young. We have a pond I can fish out of. I have been making milk kefir for about a year, and I am fairly well read on this subjects. Equipment I am familiar with: Rapid wave oven (like a nu-wave) Crock pot Presto Multi cooker (like a crock pot, but can also cook on higher temps as well--up to 400 deg) Food processor Blender Hand crank Meat grinder Yogurt machine Books I have or have ordered: *The Complete Idiot's Guide Anti-Inflammation Cookbook (Idiot's Guides) On order *Meals That Heal Inflammation: Embrace Healthy Living and Eliminate Pain, One Meal at at Time On order *Recipes Healthy: Low Carb and Anti Inflammatory (fairly common ingredients) *The Inflammation Diet for Beginners: 100 Essential Anti-Inflammatory Diet Recipes (less common ingredients)
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The 50-50 natural/peppermint mix was a success this morning. She preferred it over the peppermint straight. She took a shower yesterday and was upset at the start, but settled down during the shower. She has not taken a shower without being upset all the way through and for an hour or more after in as long as I can remember. I have had to force her to take showers for about a year now.
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Our kiddo is low in IgA and IgG. Her immuno is not concerned with the IgA being low and stated insurance would not cover IVIG for low IgA. However, since her IgG is low he says insurance will most likely cover IVIG.
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Great update. That is a lot of progress in a short time and I am very happy for you. A quick FYI, the I put one peppermint CBD drop in my mouth to see what it tastes like.....it is like have a tic tac in your mouth. It is very minty. I hope kiddo can hold that strong of a peppermint flavor under her tongue for 60 sec. I am going to try tonight so if she cannot, I can mix some from the natural flavor bottle with the peppermint flavor. ETA: I gave kiddo the peppermint tonight, and she stated she prefered the natural flavor. I will try mixing the two and see what happens.
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I have read bio-enhased curcumin (Enhansa and many other brands) can cause a low grade fever. Not sure about the tics, but it may increase them if there is a lot of die-off.
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She seems a little bit less sound sensitive and she is twirling her hair about 80-85% less (saw a short bought last night). We went to a very loud Easter event and she seemed to do pretty well at that and she had fun. She did get upset for a short bit when we got home, and sited the loudness as the reason she was upset. I may go up to 12 drops twice a day after the first week at 10 drops. This needs to have a little bit of time to reach a stable level in the body before you make adjustments. She has only been on this for 4 days at 10 drops twice a day so far. I am hoping this does in fact provide even a little bit of the antiviral properties I read about as her viral titers are through the roof for HHV 6, Cocksackie, EBV, and Varicella.
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We are trying the cibdex brand when this bottle runs out. Again, maybe a mistake, but willing to try it once. I have read good things about this brand as well.
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We are going to try the peppermint flavor next. Maybe a mistake, but we are going to try it.
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I can see why you would be a nervous wreck. How did he do? Did he take the subway?
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I give her 10 drops (she is 72lbs) under the tongue for 60 seconds, rinse with water and swallow, followed by two jelly beans to get the flavor out of her mouth. My kiddo is hyposensative as far as foods go, so we are fortunate in that area. This stuff is kinda nasty, but given this way, she does not mind too much. I do take an empty capsule, open it up and count the drops into there. Then I pour them into her mouth, and when she is rinsing, I give her the capsule half to take as well. This way is faster and more accurate than trying to drop the ten drops straight into her mouth.