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Everything posted by mmiglio

  1. 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. 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. 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. 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.
  15. I haven't slept more than 4-5 hours a night since March. Fortunately my dd sleeps 8-10 hours a night even though it takes her quite a while to settle down and get to sleep. I've tried melatonin, Benadryl, Tylenol PM, Unisom... can anyone recommend any herbs for ME? I know I have PTSD from this ordeal, and it has only been four months for us. I'm trying to find a good therapist but we don't have anyone who does CBT or DBT in our area and just sitting in an office talking about my problems for an hour isn't working. I try to mediate for 15-20 mins a day and I get to yoga when I can and walk on the beach but sleep is impossible no matter how exhausted I am. Thanks!
  16. No. The doctor didn't push her at all. I truly believe it was because she was on a pulsing break from her abx, and the inflammation got too bad. The timing just wasn't right for us. I wanted her to come now to try to not interfere with school but honestly the way the last week has gone, I don't even know that she's going to make it to school this year. I believe in the therapy. But I think the infection has to be dealt with first. As long as there is an active infection it is an uphill battle. I just wish I had seen that before we spent all this money and time.
  17. DD didn't herx on Japanese knotweed (unlike all the other antimicrobial herbs), higher doses simply worked better to quell inflammation. But I would always suggest starting at low doses for anything new, especially if your child is sensitive. Buhner also recommends Kudzu for brain inflammation. Does anyone know of a Japanese knotwood without alcohol? My dd has COMT ++ and should not have any alcohol.
  18. So I think I figured it out! Since this is her "off" week for pulsing antibiotics, she isn't on any antibiotics! She has been on them continuously since March 16. Ugh! I wish I had realized this earlier we would have put her back on zithro while waiting to start the next pulse tomorrow.
  19. She has been taking GSE for nearly two months and took Nystatin for two before that, so I'm fairly certain it isn't that. And she can tolerate sulfur pretty good. She is taking Bactrim which is sulfur based and has never had an issue with daily Epsom salt baths. She does take a low dose molybdenum which I know helps to detox sulfur. Nothing has changed in what she is eating or taking which I why I'm concerned.
  20. Ugh. My dd12 has PANS and is being treated by Jemsek in DC for lyme, bartonella and myco p. She pulses zithro, Bactrim and minociline MWF for two weeks, adds flagyl on Th and Fri of the last week and has one week off. She is on her off week right now and will start second cycle on Mon. We are at Rothman right now doing intensive ERP therapy for her OCD. She is compound homozygous for COMT and also homozygous MTHFR 1298. She is a horrible detoxer and refuses lemon water, green tea and Pinellas but will take burbur twice a day and do Epsom salt baths (although our tub here at the rental condo while we're at Rothman is gross so she is only doing foot baths). We are just starting very slowly to supplement for her mutations based on the Yasko protocol... starting with GABA which I just bought, and she refused yesterday. But she does take D3, K, magnesium, molybdenum, grapefruit seed extract (for yeast overgrowth) and a good probiotic. She has high iron and zinc and can't tolerate folic acid or any methyl groups so still trying to find a good multi vitamin and trace minerals that will work for her. I know she also needs manganese and iodine. So... to my question... She was doing OK in therapy. It was challenging for her, and she would rage a bit but cooperate. Yesterday, it completely changed. Yesterday her eyes glazed over and she "left" and regressed in age dramatically. She was talking and acting like a three year old. For the rest of the day, she came in and out of it. We have had terrible storms, and she is afraid of thunder, when it thundered, she was a baby again. After a few minutes, she was her normal self. If I challenged her OCD instead of accommodating her, she was a baby. Sometimes this behavior continued for 10-20 minutes. Previously, when she was scared she would rage... throw things, hit, kick, yell. I'm not sure which I prefer. Any ideas? Is this just a new symptom we haven't seen before? Is this a new herxing symptom although she's more than a week off abx now? We're going to try to keep her as calm as possible today... we aren't doing our therapy homework. We'll see if that makes a difference. We start abx again on Mon. I'm hoping that will bring some relief. Maybe the lyme and bart are back and are mad that we're trying to kill them and so are coming in with a vengeance. We are supposed to do this pulsing for three cycles and don't see her dr again until mid August. I was really hoping for a bit of a miracle that the first round would give us some relief but clearly that isn't happening. I appreciate your help and thoughts as always. Any other herbs anyone can recommend for detox? We can't even get outside to sweat b/c we're in for another two days of constant rain and storms. Makes it even harder to remain positive when we're trapped inside a small rental condo.
  21. Hi. We found our condo on VRBO. It is a site we use for vacationing all the time. There aren't many in St. Pete itself. I didn't want to be at the beach b/c it's a bit further from Rothman and is overrun with tourists. We actually live at the beach in Virginia Beach so being on the beach isn't a novelty for us. We are very close to downtown St. Pete in a little waterfront community called Waterside at Coquina. There are two very nice pools, and our condo is on the water. But it is a bit far if we want to go anywhere like into Tampa (min 30 min drive) or shopping (at least 20 mins). But it works for us.
  22. Thank you for your well wishes. Unfortunately it is not going well. After two weeks, she is regressing. I think we aren't far enough in our treatment of the infections. We are actually thinking of not staying to finish the three weeks. When she is afraid, she just shuts down... .her eyes glaze over, her body and behavior change, she becomes like a three year old (she is 12). It is heartbreaking to watch. She is afraid of everything all the time, and we are trying to make her do the very things that terrify her. I am a huge believer in the therapy. I know it will work for her someday. But it isn't what she needs right now.
  23. We're still trying to work out the vitamins and supplements thing. We just got 23andme results back a few weeks ago, and I've been reading everything I can and trying to learn where to start and what will work. My daughter is +/+ for both COMT so she can't have any methyl groups. Yasko suggests starting with GABA which I've been trying to get into her for days with no luck. She is afraid to take anything new right now. She is taking D3 and K as well as magnesium. I'm trying to find a multi vitamin without folic acid of any kind and a mineral without iron, copper or zinc as she doesn't need those. Interestingly when she was taking a mineral with iron she went to the dentist for a routine cleaning, and the dentist asked if she was eating a lot of iron fortified foods as she had iron stains. She doesn't eat much processed foods, so I said no and then realized the mineral supp she was taking had iron in it. We stopped that, and I've noticed her teeth are whiter. I'm so glad this is working for you. I'm hoping to find the magic formula for my daughter, too.
  24. So, we are going to Rothman. DD12 has her first appt on Tuesday. We rented a small condo on the bay about four miles away. My daughter really wants to meet other kids "like her." I thought I'd put it out there to see if there are any other girls around her age in the area that might be interested in making a new "friend" and sharing her experience? Our condo has two pools... maybe we could arrange a get together? I'd also love to talk to other moms, but mostly this would be for her. Please message me if you are interested.
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