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tu4four

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Everything posted by tu4four

  1. Wow. Interesting. Three of my children have had this weird eye thing like someone mentioned. Can't tell for sure about floaters, etc., but when my most affected dd11 was born she had a very red, inflamed looking red vein in her eye. Eventually went away. But sometimes it comes back. And she is usually "different" when it does. Same thing with my son. I do not like cats. I am allergic to them, and I really don't like them since our neighbor feeds several of them and they come over to lay around in our flower beds and on our cars. I am certain they are using our landscaping as a litter
  2. Yes, I think I have been a little choppy in my timeline. I remember reading that post on toxoplasmosis a while back... I found that really interesting and concerning since we have several loose cats (our neighbor feeds them) that are constantly hanging out in our front yard and using our landscaping as their litter box. Yuck. I'll have to start investigating that again. We saw a psychiatrist for the first time when my daughter just turned seven and had become too aggressive to ignore that there was an issue. Until Feb, she had been on heavy psych meds since then....but we had to con
  3. The title here is a little misleading. It's not really that my dd11 has ever been 100% in the past 7 years. Well, there were those 4 days in February of this year. Which is what spurred us on to continue to search hard for answers. My daughter has OCD, clothing sensitivities, general anxiety, extreme high irritability and frequent (sometimes all day) rages. She could easily be diagnosed as bipolar, in fact, we have spent 4 1/2 years on high doses of psych meds...which sometimes improved the situation for a while, sometimes did nothing, sometimes made things worse by causing big side
  4. oops. Even giving her a decent dose of an anxiety med does nothing to knock her out. Good luck.
  5. Wow. Returning bartonella. I am wondering if we are dealing with that. We are treating with Bactrim and Azithro now as well as arteminisin (?) for babesia and some detox things. My daughter took Mepron and Cefdinir and we treated for parasites and yeast. She had a horrible month or a little more, and then for the first time in a really long time her sleep began to improve. Could sleep at night. Would wake up at 7 or 8 a.m. For the first time in years. She was not 100% but much better. Now we have been off of the mepron and cefdinir for a couple of months and she is not sleeping.
  6. I wanted so badly to stop all psych drugs. She was off of all of them for four months--initially things were a little better. Then back to the same. However, my daughter's raging included aggression--things were so bad, we couldn't wait it out any longer. We are treating for Pandas/Lyme still, but I couldn't even get her to take the meds for that without giving her the pysch meds. Things are significantly improved right now. I am hoping that the treatment is having some effect, too, but for right now, I am just continuing to treat "in the dark" on the pysch meds because none of us could
  7. Our dr has always had us give half of the dose in the am and half in the pm. That has worked better for us. I will tell you that my daughter was off of all psych meds for 4 months. Treating for Lyme/Pandas. Saw absolutely no improvement in symptoms--charcoal would help for a couple of hours, advil would help some, for a couple of hours. Finally got so bad that we were looking at inpatient treatment. Raging constantly, bitter, angry, aggressive. Couldn't go anywhere, get any clothes on. Did take her to two different out of town docs, but it was difficult. Did not want to put her back o
  8. Today I saw a therapist for the second time. Like all of you, I'm exhausted and needed to be able to see things clearly all around...The therapist talked with me about my daughter's situation and after a while asked if we had ever considered an rtc. I have talked with Rogers before. Of course, I don't want to do that, but I don't know what to do to give her some relief and the rest of my family some momentary peace. We saw a Lyme doc in co on April 9, and she has been taking mepron, zitthromax, cefdinir, noni, mora, para a, nystatin, vira graphics, engystol, another parAsite med, and
  9. Wow. Good to know. My dd has babesia, but I have never even thought about this, much less been told about it. It makes sense now because my older daughter has babesia but does not have PANDAS symptoms. She has extreme pain in her sternum area and air hunger. I just recently read up on babesia again and told her that the reason that she feels that she can't breathe is not because she's not bringing o2 in but because babesia is destroying red blood cells (she's 16, and I said it in a low-key, don't freak her out way). Red blood cells which bring o2 to your vital organs. And, of course,
  10. Yes, dd was on psych meds for 4 years....Risperdal, Lithium, Abilify, Seroquel, Pexeva, Carbitrol, Stavzor, Depakote, Intuniv....a couple of them at a time. We weaned her off because she was having so many side effects and very little improvement--sometimes it was the opposite direction. We knew that she had PANDAS and Lyme (for 2 years) and went back to pursuing that as the cause. i have not wanted to put her on any psych meds now for fear that I wouldn't see the improvement or know what caused it. But I think we may have to go back to at least a low dose of Abilify or something like Lami
  11. BTW, dd is now taking Mepron, Cefdinir, Azithromycin, paromycin, yodoxin, noni, mora, viragraphis (anti-viral), engystol (sp?) (anti-viral), nystatin, probiotic, vit c, magnesium, stool softener, milk thistle, mudipur.
  12. Yes, dd was on psych meds for 4 years....Risperdal, Lithium, Abilify, Seroquel, Pexeva, Carbitrol, Stavzor, Depakote, Intuniv....a couple of them at a time. We weaned her off because she was having so many side effects and very little improvement--sometimes it was the opposite direction. We knew that she had PANDAS and Lyme (for 2 years) and went back to pursuing that as the cause. i have not wanted to put her on any psych meds now for fear that I wouldn't see the improvement or know what caused it. But I think we may have to go back to at least a low dose of Abilify or something like Lami
  13. Big hugs to you and to all of us. This stinks. I'm sorry that anybody else is going through it, too. Glad you get those little hugs from your 3 yo!
  14. Oh, I pray for herxing....Unfortunately, this does not seem to fit that pattern. We've had a couple of short-lived good spells, but other than that, it's been going on like this for 3 months since she got off of Abilify and Lithium (which were causing so many side effects and not conrolling irritability and aggression. Thanks for the encouragement. That means more than you know.
  15. Yes, I believe these are symptoms as this is/has been pretty much a constant thing. We've had a period or two of three good days, but other than that, this is it. So yes, symptoms. I do think IVIG is worth investigating after we get Lyme and other chronic infections under control (if possible). At this point, however, she's got so much other stuff going on that I don't think we could give IVIG a fighting chance yet. We are gluten free and try to be casein free (and sugar free and yeast detoxing....). She's angry at me about all that, too, not ever buying anything she likes....i guess
  16. Initially, we had great luck with abilify. Dd was 8, and we did not yet know about pandas or Lyme. She had been on an anti-depressant and seroquel which just about took her to the psych hospital or the morgue. We never did another anti-depressant because I was afraid she had bipolar and would be set off by another one. We had also tried risperdal which really ramped up her OCD. Abilify brought the flame of all this way down. We've done a lot of psych meds including lithium, which was at best like water and at worst like poisoned water for our girl. We weaned off of all psych meds when
  17. I am so sorry that your kiddo has stopped talking. . I may take you up on that offer tomorrow.....I'll have to see how the day goes. Thanks!
  18. I know that we are all exhausted from this stuff. However, today I feel like I am at the end of my rope. My daughter hates me; she tells me this every day, along with Her idea that everybody hates me. She can't stand to be near me, wildly wiping off anything that I have to he'd that she has to touch. I know this is OCD, but I don't think that she does. Although she knows that she has OCD. However, she won't take her medicine (and there is a lot of it), and I end up having to count, which she hates and makes her uglier to me, and I often end up having to force her to take it. I have had to
  19. This question sounds sort of similar to the one about a kiddo developing possible blisters close to the mouth. However, it's a little different, so here goes.... My daughter is taking a couple of anti-virals...viragraphis and engystol (sp?). She has been on both of them for a week and a half or so. She has tested positive for coxsackie and hhv-6, and I'm sure there are some undetected viruses swimming around in there. Today she woke up with four red spots on her upper arms...three of them with yellow oblong (but fairly small, although very raised) "blisters". They certainly are not cl
  20. After our Lyme appointment, we have been speeding along adding a new supplement or Rx each day. Our doc has given us some prescriptions but said we might want to start with the herbals because they didn't cause as strong of a herx. And we have seen pretty much no change until today. She is now taking Para-A, Artimisinin (sp?), Viragraphis, Nystatin, Mora, Noni and one more anti-viral. I have seen her have a herx reaction a couple of times before but just wondered if you had any other advice to help us get through the next couple of days if this continues. We have gotten a lot of bang
  21. So after reviewing and rethinking our Lyme appt and answering my sister's questions, I am wondering if all of this getting rid of viruses and other chronic infections is for nothing. Maybe i am not understanding things correctly, but it seems as if the reason that we are in this position is because of dd11's inability to detox. She has the c677 gene mutation. She has been prescribed methylfolate, and I have methyl b12. But neither her Lyme doc nor her PANDAS doc seem to be giving much credence to that. I understand that we have to get rid of chronic issues in order to "heal" her, but i
  22. Thank you. That is very helpful. Please excuse my misspellings (I am finding them everywhere). I am typing on my phone.
  23. Our Lyme doc gave my daughter something called para a, which is supposed to be dropped into a small drop of water. I tried to get my daughter to take it, and she lost it. We were in a hotel room where you can here everything, and I fully expected someone to come through the door at any moment. Since then, I have put it in capsules. Do you think this is okay? I plan to do the same thing with the Mepron suspension.
  24. I was very pleased. He gave us a specific plan and will be hitting things hard. I'm very happy with this approach because we've been on the road so long, and she has been so badly affected. So we're starting with parasite treatment and then moving to viruses. Starting with herbals before we go on to abx because he says most of those (except sameto) produce a milder herx. Thanks for asking!
  25. I haven't heard of this. Thanks for bringing that up--I'll be looking it up.
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