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Everything posted by Fixit

  1. i have space in my mail box?????? i will pm you.
  2. Hey Betty, I just checked out the lyme site and juliafaith posted something regarding her child and hhv6 and removing mold. Maybe you want to pm her. post is "holding steady"
  3. Not my story, so i don't know the fine details. Patient had very high hhv6. I believe they used arteminsinin. It took a loonngg time to slowly bring down the number. i don't know the dosage. I also dont remember if there were other naturals or abx's used in combo. But definitely ate clean, super healthy and detoxed. Tics did improve as number came down. I dont know current status of titers vs tics.
  4. TR, what a wonderful experience. So happy you could see your full child. I have a freind that has seen improvement/remittance of autism symptoms with abx. But once the abx stops things return. I am trying to get her to read this site. And told her she needs a longer course of abx I am going to forward your story to her. Per some pan dr's i have heard that you may want to stay on flag, vanco, or clindamysin for a month or 2 or more. we see great results with those abx also. Also do not to taper off of these particular abxs, so that you dont build resistance. I have been hesitant
  5. I'm glad. If you can get a cap from a hershey's syrup bottle(maybe buy it or if a neighbor uses it), it puts out exactly one drop at a time. so based on how much meds, you can make it like spackle and they are not getting too much syrup but still sweet. for ds5 it's so little meds, that one drop is enough for his thyroid med. Santa Cruz makes an organic chocolate syrup and the hershey cap fits on it. They also make a yummy mint choc. syrup too! When your ds is ready, i started ds9 swallowing the pearl probiotics. They are small too and at least it's something you want to get in them
  6. ds4 now ds5 needs armor for thyroid. each pill is about the size of a poppy seed. he will not swallow. he needs to take 2. i crush the pills between 2 spoons. then add just enough chocolate syrup and make paste out of it. it sticks to the spoon nicely and is proud he can take it himself.
  7. OH PLEASE..Do NOt Get Me Started! Peglem is right. So when i told them i can see what is triggering the "TS" i was told,,,,these are the words the dr used, and i can feel the steam coming out of my ears now..."he could have just as well had pizza the same 3 times"..(i figured out the tic/strep correlation by the 3rd go round..as ds would be 100% tic free after 10 day course of abx) I am trying to stop myself from going on with the above story. But my new line to dr's is something like if you are so smart to get your phd, why aren't you smart enough to listen to someone who is actually
  8. Just curious, has the person done this ivig? how did it go? If i can pick your brain a little on this, again if you are not directly involved you may not have the info. but,has this dr done this protocal before? do you know his success rate with this? does he do in the hospital does dr prescribe steroids with this protocal? Thanks in advance.
  9. Thanks! I do wonder if dd9 is done with lyme treatment although she'll have to continue all the other supplement support. I don't feel that dd10 is, unless it's the heavy metals that are causing her current symptoms. I don't feel like I'm done with treatment yet. But that said, I don't think our homeopathic treatment would be causing gut issues but of course I don't really know. Maybe the cats claw could be causing issues, I don't know. We are treating her gut with her other treatments and working on her protein digestion, etc. I am trying to keep an open mind though to be su
  10. PS..i don't let ds12 have the strep strain at all. when ds12 was not in episode i would let him eat that type, so until then..only as a special treat dose he get to have that in food.. the other 2 are not in Pans right now so that does not affect them...when in episode everything is off limits.
  11. Hey suzan...as i was reading my reply i'm not sure i got the complete gist across. Maybe she is done with treatment(again idk,,you are the mom and you will feel that direction more than i would, along with your drs) so, when you do further treatments..if you are actually done, maybe you are just further irritating the gut and that is what needs to be healed. just a theory. i hope that came across better.
  12. I dont' buy any with the strep.T in it...why chance it? but to be honest i do let them have organic gogert type things and the occassional greek yogurt when i mix it in a smoothy i also try to rotate the probiotcs and sometimet that includes culturelle. jarrow 299v and others. Ds4 is a real pain.."i don't like that..that is weird". Tried the loose probis..but that takes so much to get the dose high...still trying to get to 100bill for him. it is easier to buy the expensive Ultimate flora..they come in 50bill 80bill etc.. again, the higher dose probiotics don't seem to have the strep
  13. Sorry , hit enter by accident. wanted to say i am still a novice to lymes. but what i do know is that even if you stopped treatment..that i would continue with detox and treating the gut.... i think that there is a lag with the gut...and when you consider all the years just my 2 cents... and maybe that is the final thing holding dd back? the gut is a slow healling entity...just remind me of that when i am panicking
  14. Hey Suzan, it is nice to hear you are having some respit. i would agree with MT that when you start to treat again, that you might be seeing a herx. IDK
  15. yes, yes, yes...i think worse than abx use! i give nystatin when doing a taper or burst. before i had a DAn or any of the main pans drs...ds4(who was 1 1/2 then and ds12 was 9 then and start of my/family altering PANS cronic infection episode going on more than 3 1/2 years{{sorry for the digression}}) Steroids were given to then ds1 due to myco p infection that dr dx as brhochial something was given to ds1 and he has had undetected yeast for years. Thus resulting in brain fog, slight language delay(as in can get the words out or express self properly, but sooo subtle) and lack of physic
  16. just wanted to mention that we too have tried homeopathy and it did not work. BUT, that may be do to a mireade of other things including use of abx and wrong remedey. I am not patient enough to wait to see if something doen't work in a week and then give one more drop and wait a week, up to 2 drops wait another week..etc, as my son continued to tank. But i think a new trend may be happening with more homeopaths...that is if it is not the right rememdy, you should know w/i a day or 2 than up the dose or try a different rememdy. Don't quote me on that,,it's just what i'm seeing on some board
  17. HI Wombat...i've seen you on the ts board. There is alot of good info here. The thing is too read and sift through it all. Daunting. I still don't always make the connections. Or once i do i cant seem to remember how i got there. anyway, i find it interesting that you have a similar connection. it is nice that as an adult you can vocalize what you are experiencing and opposed to just witnessing and pulling the info from the child w/o trying to feed them the info that you are looking for,,,ie not to leed the witness. Someone on here once talked about abdominal migranes???? i think tha
  18. My DD has "ticced" since age 6 (she is now 20) and we never knew about pANDAS till she was about 15-16. What I didn't know till very recently and through the guidance of our AMAZING psychologist, was the tic is a compulsion (in her any way)Surprising that most times our kids don't tell us what's going on in their head because to them it's a normal state. So the tics increase as she is having bad thoughts. She too had vocal tics which thankfully are not here now. So tics could be the visible symptom of OCD. Also, from our DAN, many of our kids do not make enough stomach acid and this s
  19. YOur saying that your ds is tic free right now,,right? what i was thinking for your ds is that maybe he purged the problem out of his system by throwing it up and the stomach accids became so high that the rest was elimated out of the bowels. So maybe he had a parasite, strep in the gut, other? Maybe the upping of the tics was a herx prior to the the final elimination? yes it is weird for my ds.. i am constantly searching what is going on with his g.i. as mentioned in a post to fcefxr..when i put ds on the parasite cleanse he responds sooooo well. it treats parasites and candida an
  20. mom of pans ticcers here. ds, when exposed to clorine can increase his tics..depending on status of his current immune condition. ingesting clorine will further disregualte your digestive tract and therefore immune system..and will either reamin the same or increase the condtion. when ds throws up...he stops ticcing. ie..if he is thowing up one day he doesn't tic that day.. if he throws up for 2 days...no tics those 2 days So for my ds, i see a direct correlation between tics and his digestive tract, immune system.
  21. Amen Sista!!!! JoB Well done!!! I like who your dd is! And i can feel her personality and it mimics alot of these kids. It will make them the more compassionate citizens of this planet. Thank you for Sharing.
  22. is your son neg igg and igm my igg is very high. igm neg...i am currently being treated for myco p(chronic i believe)..i have a cough that comes and goes. Probably depending on the state of my immune system, as in letting the myco p take over, vs my system keeping myco p suppressed. the more i am being treated the more consistant my cough is(herx?) i am not the pan parent...my hubby has pans. it feels like something is stuck in my trachia. i personally don't believe you need the cough to have myco p. It can express itself different in differne people. a cough could be a tic for pan
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