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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 box. Is toxoplasmosis something that is treated with standard lyme abx....azithro, cefdinir, bactrim, etc? I'll be mentioning that to our doc when I talk to him on the third.
  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 constantly switch them up. Nothing worked long or well. Of course, our psych doesn't believe in pandas or chronic lyme. We saw a local functional medicine chiro who diagnosed her as having blastocystis hominis and obviously a large degree of gut dysbiosis (gut not working well) based on tests we did through metametrix. We saw our pedi who was useless but did agree to do Quest's western blot (negative). The pedi also tested titers (she'd had a lot of strep), and they were high. We sent blood to Madeleine Cunningham's PANDAS research project at Oklahoma State University. Her results came back as very high for PANDAS. Our pedi had nothing to do with that test and does not believe in PANDAS, of course. We saw another local dr. who has an alternative type of autism clinic. She did organic acid testing, heavy metals testing (normal) and a western blot after I had a positive elisa and a "funny western blot" through Labcorp. She did labcorp's western blot on all of my children which came back "funny". We saw an LLMD in Missouri two years ago. Igenix Western Blot was not CDC positive on her (but it was on my son), but she had enough of the positive bands that he used the test as confirmation. He gave us a lot of RXs and sent us home with mounds of paperwork telling us, "If this doesn't work, try this. If you have this symptom it could be this...or maybe not." Other than the many Rxs we got, it was a useless visit. I worked with what we had some, used Azithro, ordered minocycline from an online pharmacy in an effort to copy the protocol that my friend's daughter seemed to see some success with (from Dr. J). I never saw a herx, never a moment of change, nothing. I came home out of money and out of my husband's belief that this was really Lyme or that my girl could be healed. After that I was out of ideas. I could not take my daughter across the country because of the costs, and I was already stressing my husband beyond what he could take with money. I am a stay at home mom. Then we went back to business as usual. Psych med after psych med. Side effect after side effect. And then in January, on lithium (which I had begged our dr for some time to try), she was the worst that I have ever seen her. She climbed out her second story window onto the tiny roof of the bay window. She was screaming and beating on our walls all day most days. Destroying our house. Running off down the street to our neighbor's house telling them I was mistreating her. Screaming bloody murder to the point that I had to tell my neighbors what was going on so they wouldn't call CPS. Sounds crazy, I know, but my niece was having her first baby, and we took an out of town trip...just me and the four kids...to my niece's baby shower. She became so wild while out of town, I thought I was going to have to take her to the hospital before we came home. We survived the time there, but then on the way home she screamed and yelled and raged so hard, I didn't know if we would make it. Talked to our psych who said to wean her down off of Lithium, add something else and increase the abilify. We weaned down off of lithium, and she was a little better even without increasing the abilify. We weaned down off of abilify. During the weaning process, she was still better. Once off, she had four fantastic days....not easily irritated, the girl that I know is in there. Affectionate. Kind. And then, like that, during a trip to the mall, it started to get worse. And that evening she had a horrible bout of OCD...found out her siblings all had strep. And that put us on the search again. At her little private school, she was just sitting. Shoving papers that were given to her onto the floor. Staying in the bathroom an hour....they couldn't get her out. Not doing any work. We stuck it out as long as we could, and then we had to pull her out. She wasn't doing anything except distracting the other kids. I couldn't get her to school on time, anyway. Couldn't get her up and then it became a fight. Our autism clinic (she is not autistic) put her on Azithro 250 once a day. We found a PANDAS doc four hours away who took our insurance, and I made an appt. Had to trap her in the car. This doc was great in that he listened and seemed to really examine her. Ran a lot of tests. Not any great info. He changed her to Cefdinir, and she had a huge herx within three or four hours. But then things were back to normal...raging all day, screaming, yelling. Had a dr. appt with a lyme doc in Colorado in April. PANDAS doc gave clonopin so that I could get her on the plane. I used charcoal capsules, clonopin, and finally something stronger to get her to relax. She slept the whole plane ride there. The Colorado doctor has been treating her aggressively (much to the PANDAS doctor's chagrin), but we need aggressive. He started her on Mepron, Cefdinir, some antivirals, antiparasitics and some detox helps. I love this doc. He takes this stuff seriously. We saw him again in June, and I have a phone consult with him in a few days. We did see her sleep cycle working better toward the end of the second month. Some time in there, she stopped raging daily, but she was still fairly irritable. It was still difficult to be around anyone with her. When we saw him in June, he switched her abx thinking that we could get at other forms of the disease better with some other abx. We did some Rifampin in there. Bactrim. Zithro, artemisinin. But she has lost the sleep situation. Stays up all night. Doing crazy, crazy things. I was already homeschooling my son (7), and now, of course, she is homeschooling because she cannot function in the classroom. To teachers it does not look like cannot. It looks like will not. I can't blame them. It looks like that to me often. So, yes, in reality, we have not been treating lyme long enough to be done. But I am only seeing things worsen. I love this kid. I know that she has a soft heart in there. She was most soft-hearted kid when she was little. But I can't seem to get her out of this hole or even get on the right path. And I know that my husband is quickly losing patience with how expensive it is to treat this...not to mention that we are all positive for Lyme (including him) and 4 of 6 of us for Bartonella, all of us for Babesia. Thank you for listening. I know this was a long post. I am exhausted, you all are the only ones who get it. Many Blessings
  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 effects, increasing rage, etc. My daughter had those great four days after coming down off of those psych meds. Before siblings developed strep and extreme OCD kicked in again. Since Feb, we have been treating with abx, sometimes a low dose of Abilify as well, often a couple of Advil capsules, sometimes charcoal which would help for an hour or two at a time. She was treated for parasites, viruses and was taking abx for Lyme for two months. The first 6 weeks or so were horrible. We were looking at some type of hospital or school placement. Things seemed to improve a little toward the end of the second month. We added A-Bart to our regimen of Zithro and Mepron as well as Samento and some other supplements. For the first time in years her sleep improved. She would get tired toward the end of the day, fall asleep and wake up at 7 or 8. That was a biggie and an obvious sign to us that something was improving physiologically. Then we switched meds--our doctor said that things like yeast, etc appeared to be significantly improved, and we switched abx. we are now on bactrim and zithro and she is scaring me big time. She has scared me in the past by raging so much and hurting others, but this is different. She has always had issues with clothes, but now she has been cutting up all of her clothes, spending hours trying to put together new (and not always so modest) outfits. But then she started lying. Bold-faced, look me in the eye and lie to me lies. No, I don't have the computer, no I didn't go to that website, I am just writing (and I later find the computer shoved under her bed. We have told her she absolutely cannot get on the computer. When we find one and are in the process of locking that one up, she finds another one while we are still putting up the first one. Or finds an ipod or an iphone or a nook or a kindle. She is 11. She has created an email account. Created a facebook account. Friended many people. Tried to create a myspace account. looked up teenage dating. Tried to sign up on a dating website (this would not be okay, anyway, but the pictures showed much older people. She has tried to set up a video chat with a site that says you can video chat with random people. I have tried to talk to her about this and how dangerous this is. How she could be playing with her life. She lies that she didn't do it and then gets back on every time someone walks away from a tech device. This is a kid who never lied to me. Maybe it was because of OCD, but she would tattle on herself. She never lied. Was not sneaky. Now I look in her eyes, and I do not know who she is. But something tells me that giving her more psych meds or whatever is not going to take this away. My husband and I are looking into putting her in an away school for troubled girls for this school year. I know it seems dramatic, and I never wanted to do anything like that. But I feel like she is working outside of our ability to keep her (and our other 3 children) safe at this point. And we can keep chasing down different rabbit trails and may never get to the answer. She's 11. She's been sick to some (usually extreme) degree since she was four. If something dramatic doesn't happen, what will happen when she has this attitude at 15? I can't bear to speak out loud the things that could happen then. I guess I am looking for words of advice and encouragement.
  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. It is a wild ride around here. Melatonin had stopped working for us. Even in higher/lower doses. Even giving her
  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 live that way any longer. For us, we will not use an SSRI because it put her over the edge, but Abilify is working again on a low dose.
  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 on any psych meds because i wanted to be able to see which med improved her situation. It finally got so out of hand, however, that my mom and my sister were both calling me almost daily with inpatient treatment resources. And they didn't see the half of it. Like when she climbed out her second story window, etc., etc. We finally put her back on a low dose of Abilify. Some raging continued for a week or so. She hadn't taken her other meds for two weeks because getting her to take it had become a situation where everyone's safety and sanity was at risk. So we started all the other meds again a couple of days after Abilify. Now I don't know which has helped, but we have backed the Abilify down a little--I tend to think the other meds are helping, but I am sure that the Abilify is helping, too. I know all meds affect people differently, and Abilify is no exception. However, Abilify is actually not an SSRI--my daughter becomes out of her mind on an SSRI, so I, too, am careful to never give her one again. I believe that Abilify is a mood stabilizer? Too late to remember right now, but not an SSRI. My daughter was on Pexeva for a while, and she just about went over the cliff.
  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 I probably forgot a few. NO CHANGE. One of my friends has a daughter who had the same rage and clothing sensitivity issues, and they saw our doc in co. They never saw an improvement until after eight months when she was taken off of all meds and made a remarkable recovery. But I am having such a difficult time believing that she is getting better since I see absolutely no change in her raging. She routinely wishes me dead, spits water for her meds in my face when I am trying to convince her to take them, calls all of us names, etc. I still can't get her to do anything at all and can't get her out of the house without an enormous fight that she doean't have anything to wear. She rips up everything that I buy her and calls me names for buying it. Then calls me more names because she doean't have anything to wear. Our house is screaming from the time she gets up until we go to bed (I can't get her to sleep, and melatonin and valerian root seem to have stopped working). I saw a brief herx on cefdinir and another brief one on noni. Other than that absolutely no change. Any ideas?
  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, anemia follows. Why was I not thinking of that?
  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 Lamictal. I can not live like this day after day any more. Thanks. I cannot speak for tufour, but my concern with IVIG is that it is a blood derived product and as such would be a very last resort for us. Kiddo's doc has already recommended it at the first visit even before we found she has PI. Now, we also find she had kidney disease of some type, which makes IVIG even a more distant possibility for us. It seems IVIG helps some and does not help others. Also, from my limited understanding, the chance of success is far greater if you have other infections under control before beginning IVIG. I haven't tried it yet, but am strongly considering, but what about trying camel's milk. It is said to work like IVIG. You can research it online, and there is also a facebook page (it's a close group...you have to apply to be accepted) https://www.facebook.com/groups/225663314116369/?fref=ts. Just another thing to consider. Will definitely read up on that. IVIG without the IVIG? Sounds promising.
  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 Lamictal. I can not live like this day after day any more. Thanks.
  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 i can understand that part. I have been thinking about NAC and will try that. I've gotta' try something else. As far as redirecting and being super-nice, though, my very presence (or how I am breathing) offends her and sends her over the edge. Maybe NAC will do something good. Thanks for the ideas. I am so thankful that when I am at my wit's end, you all get it.
  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 dd was on lithium and 30 mg of abilify. I think we had gotten all the good we were going to get out of it. Have you tried lemon balm? I bought some, but we have not used it enough to see if it would work for my girl. I hear some others say good things about it. I'd love to know what you decide and how it goes. Good luck!
  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 be extra firm, even forceful with her as she has operated on the ODD plan for quite some time. I have lost my cool many times over the course of this whole thing. She will tell her younger sister (3) that I am so mean and don't love anybody but myself because I have asked her to do something simple like set off a rage. Anything that happens to her that is bad is my fault. She is not actually raging all the time right now---beating holes in walls, etc., but she is just being mean--to almost everyone at home, but particularly to me. Today when I was trying to get her to take her meds, after I waited for about an hour of her standing with it and saying all kinds of mean things. I went to her and started counting. She spit a big mouthful of water in my face. I know that seems small compared to what it could be, but I am out of ideas. I am exhausted and frankly ready for her to go to a rtc. I have never ever wanted that for her. But I am at my end. My family is in constant chaos, my husband and I are on the brink--in part because this is so draining, and I am trying not to bring these issues to him so as not to push him further over the edge. Any suggestions? Thanks for listening.
  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 clear-looking, and I am highly suspicious that they are contagious, but I have no evidence of this. So I am wondering if this is a physical herx? About 10 days after antii-virals were started? She started Cefdinir 2 days ago, but I am not thinking this has anything to do with it. It shouldn't be an allergic reaction (and doesn't really look like one) because she has been on Cefdinir before....about 2 months ago, if that. She is also taking Para-A, Mora, Noni, Mundipur, Magnesium (500 mg), stool softener, Artemisinin (sp?), Nystatin, Jarrow Probiotic, Vit C, Vit D Should I be concerned about this? Or just wait and see, suspecting that it is a herx?
  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 for our buck out of charcoal, but I want to be "armed" in case it is not enough this time. I am assuming that this herx is from Noni, however, she started Mora yesterday, and I have never seen her have any obvious reaction to Nystatin (which we started two days ago). I know it doesn't mean that it couldn't happen. I realize that ideally we should be giving 3 or more days between adding things, but we need to get up to the full course of meds and be on them for eight weeks before we go back to see our Lyme doc in June, and he has prescribed quite a few things. So any advice on detoxing, relieving herx symptoms will be greatly appreciated...you all are my best source as other parents who have been through it!
  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 is there any such thing as healing her? Are we always going to be trying to mop up things that her immune system cannot detox? If that is the case, how will she ever be able to live a "normal" life? Hold a job? Have a family? What's worse, I have 3 other children who have the same gene mutation. The older one is not as seriously affected (although they all have Lyme). But my 7 year old and three year old seem to have OCD, and my 7 year old boy has some strange things. His behavior is starting to seem like my dd11's on a slightly milder scale. They all have frequent strep and some sort of virus that swells a vein in their eye. They all have issues with yeast. My son has bumps on his elbows that make me think of hand, foot and mouth (coxsackie), but I don't know for sure. So, is this just it for us? Do people ever really heal?
  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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