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About mmiglio

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    Advanced Member

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    Virginia Beach, VA
  1. PANS/PANDAS-Feeling Lost!

    How much and which brand of olive leaf do you use? Are you using it for inflammation?
  2. We are on day two of the absolute worst herxing and flares we've experienced in five months. I cannot believe how many tears one person can cry. The only thing getting me through right now is the fact that she still sleeps for 11 hours at night, and so for that time, there is peace in our house. And today my husband (who is active duty Navy, 26 yrs and hoping this will lead to an Admiral's star) told me that his next job assignment is very likely going to be Hawaii.... in the spring. I told him he would have to go without us. I can't imagine there are any doctors in Hawaii. But just in case... is anyone out there in Hawaii?? I know I'm thinking short term here and that by spring we will hopefully be in a different place with her treatment but after reading your stories of years and years of treatment and barely surviving the last five months, I can't imagine how we would be able to get the help we need so far away from everything.
  3. herxing - passing out

    Yes. I guess that was stupid. She does flagyl every four weeks as part of the protocol so we just kept with it as per her dr. The symptoms started yesterday however before even increasing the rifampin. We probably should have started the rifampin every other day to begin with instead of just once a day. Although the dr wanted to jump right in to twice a day. The dr did call back and said to stop the rifampin and flagyl and go back to just minocyline on MWF next week and then add rifampin on MWF the following week. And we are increasing her luvox to hopefully get some of her OCD to make her reaction to the meds more tolerable. Rowingmom... in those early days when you were treating your DD with multiple abx, how did you get through the day? We've only been at this five months, but there hasn't been any progress beyond the resolution of most of the raging. Her OCD is going off the charts, and she'll barely eat. Do we just sit back and wait for the abx to hopefully work? Was your daughter able to go to school? Mine is supposed to start 7th grade on Sept. 8. She was an advanced level student. Now we are looking at a home bound program but aren't even sure how she'll do that.
  4. Just when I thought age regression was the scariest and most heartbreaking part of this disorder we have crossed into a new one. Yesterday my dd 12 (PANDAS/PANS Feb 15) started having episodes where she couldn't even talk and she frequently just passes out. Fortunately the few times she did it while standing I was nearby and was able to catch her. They are continuing today. It literally is like her brain is so inflamed or scared or something that it has to shut down. Her body just turns to jelly, her pupils get very small and she just crumbles. I have a call into her LLMD but who knows when she'll call back. She started rifampin last week... we did one week with just 150 mg a day and yesterday added the second 150 mg pill. I can't decide if we should go back to one pill or push through since the second pill really seems to be killing some bugs (possible lyme and bartonella diagnosis along with strep and myco p). She's also on 50 mg minocylcine 2xday on MWF. Today and tomorrow she is taking flagyll for cyst busting so I imagine the herxing is only going to get worse. We're detoxing with burbur, pinellas and epsom salt baths. She won't do charcoal or clay or lemon water. She doesn't take any meds on Sat and Sun so I'm hoping for some relief over the weekend but has anyone else had this issue? How much can one little body and brain take?
  5. We aren't at the methyl group thing yet... we are COMT and VDR Taq so I read we are very intolerable of them. Waiting to hear from the dr about how to supplement.
  6. I've been looking for just this kind of b complex but the niacin seems crazy high or is that a typo on the website??
  7. I've been looking for a b complex without folic acid and b12 and saw this one but that seems like a very high dose of niacin... or is that a typo on the website?? Do people who are COMT +/+ with VDR Taq +/- who aren't supposed to tolerate methyl donors at all (according to Yasko's chart) need small amounts of methyl folate?
  8. 5-htp success!

    I'm wondering if you are continuing to see any success with 5HTP?
  9. Can I ask how long it took to get an appointment with Dr. Greenblatt and how much it cost?
  10. I am in this boat right now... I'm not so concerned about the germs at school (although reading through your posts maybe now I am) but about her ability to learn and be stress-free. During her good days, she is an advanced student going into the 7th grade but on bad days right now she is a four-year old that can barely dress herself. How can she succeed in school like this? But how do we keep her moving somewhat forward on the good days? I need to call our school to see what the options are and look at homeschooling. I know there are some very active co-ops in our area, but I'm just so not the homeschool type. Although I might be coming to realize that might be our only option. Just one more reason to really hate this disorder. I really really want our lives back.
  11. As usual, LLM, you are a genius at taking all the information and making it sound so "easy." I've been reading and re-reading everything I can find and just can't put it into plain English that my fogged and very tired brain can understand. Thanks!
  12. herbs for sleep?

    Ok, so I have been taking Calms Forte by Hyland for almost a week. You take 1-2 tables three times a day. I have been sleeping somewhat better but more importantly, after I take it, the knot in my stomach goes away. The only ingredient in it that I recognize is chamomille but so far it is a dream. I have colitis and can't risk magnesium as I don't need to be in the bathroom anymore than I already am. Since I am compound homozygous for COMT, I know I am estrogen dominant. Does that mean I am low on progesterone? I have to much to learn.
  13. My dd12 and I are both +/+ for both COMTs, MAO-A and 1298 and +/- for CBS so we're kind of in the same boat. Yasko's current approach is more to address COMT first by balancing GABA/glutamate. And like LLM said, not everyone is going to have the same reaction to sulfur, ammonia, etc. in the body. Use the test strips to determine sulfur for sure. However, everyone can benefit from getting junk out of their diets. For my family, we already ate organic and all natural so it was very frustrating to see some of my daughter's OAT results which showed high aspartate and glutamate when she's never even had nutrasweet or MSG in her life. Her body just doesn't process the naturally occurring amino acids very well. And we were already eating dairy, gluten and egg free to try to help her ADHD. So I feel like we are doing as much as well can with the diet. We just have to find the "key" to the right "lock" to get everything moving in her system. We've been supplementing with GABA and lithium orotate low and slow for a few weeks and haven't seen any change at all but I know it takes a while for GABA to build up in a system. But it is so frustrating to feel like you are doing all of this for nothing. I'm going to give it another few weeks before we add anything new but I do feel like I am sitting on my hands just waiting. Neither of us has ever really responded quickly to any supplement we've ever taken so that is harder. I just keep thinking there is a magical dose out there that we haven't hit yet.
  14. I get capsules from amazon by Seeking Health. I think it's called Resveratrol Plus. http://www.amazon.com/Resveratrol-Vegetarian-Allergens-Seeking-Health/dp/B00DCGIYW0/ref=sr_1_1?rps=1&ie=UTF8&qid=1437953615&sr=8-1&keywords=seeking+health+resveratrol While there are many brands of resveratrol, it is challenging to find a resveratrol that is just japanese knotweed (polygonum cuspidatum) without resveratrol from grapes. (FWIW, I have seen discussions about people having issues with changes to the Source Naturals brand, and I'd guess the change was probably the addition of red wine extract. So I never bought that one. I do have the Now one with red wine extract and I didn't like it though I can't remember why - maybe headaches or something) I thought there was a bigger difference between jk and resveratrol... although I just read on a lyme FB page that jk is estrogenic, and my daughter isn't supposed to have anything like that as she has COMT +/+ which is supposed to make her estrogen dominant. This is all so confusing.