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Posts posted by jtp

  1. Thank you all for your thoughts,comments and support. I am going to get the book Cure Unknown, read it myself and leave it lying around the house and maybe she'll pick it up and read it too. I can not suggest it at this time because she'll just snicker at me. Last night she asked me "When am I supposed to take this probiotic?" That's a start, I guess.


    I may be new to lyme in our family, but I have been reading this forum for years, I am not surprised that it has hit our family. I do think there is a possiblity of lyme for my DS as well, but according to our PANS doc and Integrative doc they think lyme is unlikely because he has done so well with Azith. He has been off abx for 5 weeks now (currently being treated homeopathically) but our next appt with Dr B is end of July and at that time the rest of us are getting Igenex tested. I too have been treated for Mycoplasma, but both my husband and daughter have had myco in the past but not a current infection (or so the labs have suggested that).


    The fact that my daughter tested positive and we live in the woods, my husband deer hunts it's time we dish out the cash and test with IGENEX( I will ask about Advanced Labs). We all tested negative last year (I believe it was from Quest).


    As far as detox I am new to that as well. The Integrative Doc only suggested activated charcoal. I can hear my daughter now, "I'm not going to eat charcoal are you crazy?" but I'll try and see what happens.


    Does anyone have suggestions on an LLMD in Mass? I don't think I'll bother trying to get in with Dr J. there's a long wait time and my daughter will soon be 18 anyway.


    Thanks again everyone!

  2. Any thoughts/advice on my daughter's(17yo) Igenex results below:


    I have a son with PANS(mycoplasma) and now a daughter with Lyme. She has suffered with anxiety/depression/add/cutting, school phobia and more for a few years now. She does not think PANS is a real disorder. Our PANS doc suggested we test again for Lyme since nothing we have done for her worked so far (psych meds etc., therapy).


    Question do these results suggest that this is a new infection with LYME or is it possible this is an old infection resurfacing and we just caught it at the right time? Previous test last year was not Igenex.


    She was given Doxy and I was told to expect a herx. She has been absolutely nasty for the past two days, is that part of the herx or just the usual teenage behavour?


    Igenex - POSITIVE


    IGM-Wesern Blot

    **31 Kda ++++

    **39 Kda +

    **41 KDA +

    58 KDA ++

    **83-93 KDA **


    Igenex - Negative


    IGG Western Blot

    **41 KDA +


    B.Henselae- Negative


    Thank you.




  3. I'm probably coping as well as you or worse. My son is 13 with PANS at the moment he's doing well.My daughter is 17 and is most likely PANS she's been suffering with anxiety, depression,eating disorder, mild OCD, school refusal(actually quit school got her GED), cutting and switching therapists since age 13.Tried lost of psych meds. She doesn't acknowledge that my son is sick and said that PANS isn't real. Won't get a job or go back to school, complains anxiety and depression is too bad. She thinks she's bipolar. Won't eat properly, won't take supplements. She refuses to discuss the possibility of having PANS.


    Mycoplasma seems to be the main trigger in the family. We've all been exposed and treated for it. When I get stressed out the Myco seems to return to active status for me, and them I'm overun with fatigue. We're still trying to figure this out. I know that right now my daughter's titers are in the high range because I forced her to be tested. She refuses ABX or any meds at this time.


    My energy level is well below normal. Besides having these two issues I have an 83 year old mother who is in need of help as well. I would love to exercise again and maybe just smile once in a while, but it has been a tough 4 years. I'm still waiting for that silver lining.


    So I hear your pain and I cope by taking one day at time, good luck.

  4. My son (almost 13) first episode with PANS at age 8. His most prominent symptoms were tics(mild impulsivity anger, adhd), eye blinking, nose scrunching,smelling hands, neck rolling but towards the end of his first episode came the eye rolls for us it was scary. It looked like he was having a seizure. We thought he was just going through a phase with the tics. We then got an appt with a neurologist who said it was just transcient tics not a seizure. At that time I believed her because the last tic was the eye rolling which was severe at first but as time progressed it slowly faded away.


    At age 11 this whole scenario started again I knew then it was PANS(mycoplasma trigger the 2nd time around). Again the tics began and the last tic was the eye rolling I watched it increase and peak for about 2 weeks then slowly start fading away. We brought him to a new Neurologist and this Dr.diagnosed him with either Parainfectious OMS or Sydenham's Chorea.


    Since he's been on abx no ticcing and we've been receiving treatment with a PANS Dr.


    I would definitely have the neurologist check him out since he was unresponsive for 30 mins.

  5. Teri,

    My DS12(will be 13 in a few weeks) took Nystatin for two days and it gave him stomach cramps and it was only an 1/8 of a teaspoon of the powder. Our Integrative MD took him off and we are using supplements for his yeast now. Oregano oil tablets and Grapeseed extract pills. He said his stomach was too sensitive to meds right now and maybe we will try again in a month when his gut has a chance to heal. Don't know if this helps.



  6. I actually just made an appt with a Homeopathic practitioner in May. I am going to try it in the hopes of adding more support to keep my son healthy. I plan on keeping our PANS doc for now and especially our Integrative MD. I find we get the most benefit from the Integrative MD. Our goal to is get our son off abx for a while. Stephanie2 who doesn't post much uses homeopathy for PANS and her sons are doing great.


    I agree with the other postings it depends on what your trying to do and how comfortable you are with the options.

  7. I posted a topic regarding yeast issues and got a few responses about digestive enzymes and I'm going to look into it too as soon as we get the yeast issues under control. I too am superstitious about posting too early so I hardly ever post.. I have a very picky eater who gags when trying to eat vegetables. I've been trying for years. I also don't add any supplements until I speak with our Integrative MD. I don't like to switch things up without getting the okay from the Doc.


    Thanks for getting the word out, Hey 2lbs is 2lbs it's a step in the right direction.


    Anyway I asked our integrative md about Enhansa he said it's a good supplement and would recommend it but not at this time.He told us not to give this to him until a few months down the road. He said it can also be tough on the gut. We should not give our son Ibuprofen either until his issues are better. That's why he suggested for us to stop ABX after treating with everything he prescribed for at least 2 weeks. We have only be giving him VSL # 3 for over a week and started the Oregano pills two days ago. In a few days we start the Grapefruit seed supplement. It will be a couple weeks before he will be in that position, but we'll take it day by day.

    DD11, who has been on combo abx for 2 years now, developed an itchy rash (but not allergic urticaria), a huge upswing in motor/vocal ticcing and increase in giddy behaviour/urinary frequency when we added 1 drop of grapefruitseed extract to her supplements. I didn't figure that one out for a week! My first thought was yeast although she has never had yeasty symptoms and BM's are fine. There is no igg yeast testing available in NY or ONT.


    I told the LLMD I wanted to address yeast with a more natural protocol as we are weaning off abx. We have been using fairly high-dose probiotics since treatment started. DD is now taking 1 capsule oil of oregano capsule daily, 1 cap Life Extension Super Bio-curcumin daily and 2x caps ProtoCol C.Away (caprylic acid, paud'arco, black walnut oregano oil) daily as well as raw garlic. Her ticcing has decreased from about a 6 to a 3/10 (but still there) since beginning these supplements. The giddy behaviour/urinary frequency has disappeared. I, myself am now scared of grapefruitseed extract. If the GSE was indeed killing off yeast and causing the reactions I noted, it was much more potent than any of the other supplements I have mentioned. I am now scared of it. If we use it again, I will be applying it to the bottom of the feet to start off.

    Rowing Mom,


    Thanks for the post. I will keep a close eye when I add in the grapefruit seed capsule. Unfortunately, It's a capsule so I can't go slow with it. Maybe that's why he suggested to add this GSE last.

  9. Hi and welcome to the forum.


    I usually post on the PANS forum but your Topic caught my eye. My DS main PANS symptoms were Tics but he also had other sensory issues and adhd behaviour when flaring with PANS. Since he's been on an antibiotic I haven't noticed any of his previous Tics. He does, however, crack his joints in his fingers and toes. He does this when he's watching TV or when he's in bed before he falls asleep. He only cracks his toes and fingers once then stops. This has started a couple months back.


    I remember lots of kids cracking their joints on purpose when I was child and the parents saying you will get Arthritis if you keep doing that. So I really didn't think this was a Tic or a Tic for him. Now if I mention this to him he will just do it more and laugh. I'm hoping this is just a habit and will eventually fade away. I do hope that he doesn't break a toe.The Dr dismissing your comment about him cracking his joints for 5 weeks does not surprise me at all. I find most mainstream Dr's don't care about getting to the bottom of something they just want to fix the problem at hand.


    I don't think my post helps you in anyway but I wanted to let you know that I am dealing with it too.


    I hope other's can give you some better advice. Good luck

  10. jtp - we are in a similar situation. My DS has had simmering issues (not full flare) for about 7 weeks. We did a blood test for candida yesterday and its high in the list of likely suspects. I stopped all abx last week but then DS got a cold and he started feeling like "a mistake" and that maybe he shouldn't have been born. So I immediately broke into my emergency stash of augmentin because I didn't want to risk having a snotty sinus cavity turn into a strep incubator. Once we're done with 10 day regimen on Saturday, I'll stop the abx and he'll be abx-free (that's the plan anyway). Because it seems counterproductive to fight yeast while on abx and since I think the behaviors (mostly anger, adhd, unaware of how his actions are p*ssing people off) point toward yeast, it seems worth a trial of no abx to see if we can make headway. Heaven knows being on them wasn't resolving things.


    Like you, our spring break is next week and I'm waiting until tomorrow to start enhansa (and garlic) because past herxes have cost him friendships. Better to ruin a stay home vacation than risk irrational behaviors at school. Fingers crossed for you. Our past yeast herxes have only lasted a week or so. But it's nearly impossible to know if you're on the right track when in the middle of the storm. Is this h**l a herx or is it Pandas or lyme or something else? I've only been able to remind myself of what the evidence suggested and hold my breath. But usually, when we've been in the right path, I've seen signs within 2 weeks. If not, I tend to look for other things. It's very frustrating.


    I can't comment on the BMs - DS doesn't let me inspect them anymore and he doesn't look. The other night, I asked him if his stools were firm and he looked at me like I had two heads. "How should I know?" he asked. My DH said "don't you look at your own poop?" DS said "No! that's gross" to which I told him that I thought everyone did - dogs, people...that you could tell things about your own health by being a poop-ologist. He just made a mental note that this was yet another story he could write in his memoir about his nutso mom and his crazy childhood.

    LLM, Sorry to hear you're fighting yeast like us. This is exactly what I had hoped would not happen. Anyway I asked our integrative md about Enhansa he said it's a good supplement and would recommend it but not at this time.He told us not to give this to him until a few months down the road. He said it can also be tough on the gut. We should not give our son Ibuprofen either until his issues are better. That's why he suggested for us to stop ABX after treating with everything he prescribed for at least 2 weeks. We have only be giving him VSL # 3 for over a week and started the Oregano pills two days ago. In a few days we start the Grapefruit seed supplement. It will be a couple weeks before he will be in that position, but we'll take it day by day.


    I do not have an easy time checking the BM's my son tries to sneak when he goes to the bathroom. He tends to fib a little just to get me out of his face. I keep explaining that I will stop checking once he's doing better.


    I'm very nervous about stopping ABX but if it's necessary it has to be done.


    My son think's I'm crazy too and tells me I'm over protective. I've told him some stories about my childhood memories and I can just see the stories he's going to tell his kids. :)


    Let me know how you do over vacation week.

  11. SF Mom,


    Thanks for replying. Unfortunately the stool test did not cover pancreatic function and enzymes so I have no idea what his levels are. I have often wondered if he was actually absorbing the proper nutrients since he is very small for his age. Although when he first started abx within a few months he grew 2 inches and gained 10lbs. Now that has stopped. He's a very picky eater and yes his sugar consumption was huge before abx and during. He doesn't eat any vegetables at all. The only thing we can do is restrict sugar intake as much as possible. I'm going to see if we can check his function and enzymes at our next appt. Great idea thanks.


    I can't believe it took 12 weeks for things to settle down. I guess I'm in it for the long haul here. I had noticed an increase in ADHD symptoms for a while but since we started treating it's been his mood mainly. I'm glad to hear that the diarrhea and soft stool is normal for yeast because I was getting worried as to why this was happening. I certainly hope that we are not dealing with much more at this time. Our integrative seems to think that yeast has been an issue even prior to PANS and I wouldn't be surprised since he has always had a bad diet.


    Your reply was very helpful.

  12. T. Anna,


    Thanks for your 2 cents :). He's doesn't have any PANS symptoms(mainly tics and impulsivity ) at this time, but he is very irritable so it could be the beginning of something. He has school vacation next week so I suppose if we need to try and stop to see what happens it would be a good time.

    Does DS have any PANS sysmptoms now? Tics/OCD/Thoughts? Have you run any tests to see where his titers were on any of the triggers.


    If you think that DS (and the rest of the family) can handle the risk of PANS coming back, and he is relatively symptom free, then stopping ABX may not be disastrous.


    It seems that several people here have tried tapering off and see results rather quickly if things aren't going well.


    You can try to change the probiotics and drop some of the other supplements for a while and see if that helps (while keeping the abx).


    Just my .02.




  13. My DS was doing so well we were planning on doing a trial off ABX(azithromycin 250mg daily) this month(PANS caused by mycoplasma). He had two BM's in a row that looked like bakers yeast(sorry tmi?) so we had our Integrative MD run a 3 day stool test. It came back HIgh for Candida and Sacchamyces Cervisae(sp?)another yeast. It also came back with little or no beneficial bacteria. So he prescribed VSL#3 Probiotics then after a week add Oregano OIl Tablet 2x a day, A week later add Grapefruit seed extract pill 2 x aday. The stool test noted that these supplements would be beneficial to killing yeast. He had tried Nystatin but couldn't tolerate it. Our Pandas Dr prescribed Lamisel but for now we are trying the more natural path because his gut is a mess. If he couldn't handle nystatin I doubt he could tolerate Lamisel either, at least right now.


    He has been very irritable lately (which I assume is being caused by the yeast) or is this die off reaction? Also the past two days he has had that bakers yeast type BM again, is that die off too? Does anyone know how you can tell that the yeast treatment is working? My DH said just stop the ABX and be done with this. I am considering it if this weird yeasty diarrhea BM continues. It seems to happen an hour after I give him his ABX.


    My son is sick of taking meds/supplements and just wants to stop. He's getting to that age (almost 13) where he wants to be more independent. I don't blame him either, who would want to. He'd never take any meds or supplements if I didn't make him take them. He tells me he doesn't have PANS anymore so he shouldn't need to take any of these pills.


    The Integrative MD told us that as long as he's on ABX this merrygoround is going to continue.He said when he is on all of the supplements and VSL#3 for at least 2 full weeks we should consider stopping ABX so his gut can heal. And when we do stop to give him Ibuprofen for 5 days to hopefully stop any inflammation or recurrence of PANS symptoms, but we can't use Ibuprofen now because his stomach is too sensitive. He's does not believe in tapering off ABX.


    We are also looking into the homeopathic route after abx is discontinued.


    Any comments or suggestions on my post would be greatly appreciated. If not for anything else but assurance that I'm heading in the right direction. Thank you

  14. My DS has been on Azithromycin since May 2012. In January 2013 our Dr added Cefdinir(Omnicef) for a sinus infection. My son is allergic to amoxicillin and the Dr said he may or may not be allergic to Cefdinir. We only gave it to him for 3 days because his anxiety grew worse with each dose. I'm not sure if that was an allergic reaction or an intolerance. But I have read that others have had a good experience with it.

  15. My DS12 first episode started in Mar/April 2008 after an Upper RI. Tics and odd behaviors etc began about 6 weeks after. It took about 12 to 16 weeks to fully recover. Second episode was in 2011 in July(ear infection and sinus infection) treated with 5 days Zith and most of his symptoms(eye rolling the worst) went away in about 12 weeks. He did not look well after the 2nd episode and he had mild off and on symptoms throughout the year. Finally got him to see Dr B in May 2012, diagnosed with PANS with a mycoplasma infection and allergies. He's been on Azithromycin ever since. He has not had an episode since ABX started, but still has recurring sinus issues. Now on allergy shots. Not sure where we go from here, but as long as he's doing good we're happy.

  16. My son has CI and still does(but much better). When he has an exam the Dr takes a pencil/pen and holds it in front of his eyes(not real closeto his eyes) and tells my son to look at the pen. He will move the pen forward and backward.


    He watches his eyes to see if they converge properly and for how long he can hold the eye's in alignment. He also checks for eye tracking by making the pen go around in circles and watches how his eyes follow the pen.


    There are probably more tests that they will do if you're a new patient, but that's the standard test he gives him everytime we go. He goes twice a year to keep his eyes in check. If things are off he will give us more exercises at home, if he's doing well, no exercises. I sort of know them all by now so if I see any issues I just have him do a few exercises myself.


    Good luck in your search.

  17. We use Honeywell Enviracaire Hepa Air Filter purchased from Amazon(we actually have two one upstairs and one downstairs). They have a smaller model too. Less costly. We've used our Air filters since October always on. My husband said it's too noisy. It really works great, we have a Yellow Lab and two guinea pigs and when these filters are on you can't smell anything but fresh air! I definitely notice when my husband sneaks and shuts it off.

  18. My son is 12 and had vision therapy when he was 8. We noticed when he was 2 that his eyes were a little off and had him checked by an opthamologist and he said nothing was wrong. We then found a pediatric optometrist who diagnosed my son with CI. He gave us home therapy to keep his eyes in check until he was 8 then we paid for 12 weeks of VT at his office. I hate to think of what could have happened had we not followed through with VT. Today he reads way above his level, has an excellent vocabulary and also writes way above the 7th grade level. He loves to read so much that I have to make him stop and do a bit of VT to rest his eyes. He will always have CI but he has learned from VT what exercises to use when his eyes get are overworked.


    Those remarks about an eye roll you say that are not a tic do sound like a tic my son had. He has had eye rolling very badly when he was in a flare. It was the most prominent tic. As he got older he was able to control that eye rolling and I would catch him doing it occasionally. I asked him about it and he said, " Mom I can control the eye roll, so when it starts I try to stop it". I'm just wondering if that's what your son is doing, controlling it when he knows someone's watching.


    Now that he's being treated for Pans I haven't seen that eye roll anymore.


    We are very happy we chose to do the Vision therapy.

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