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Everything posted by kengela

  1. Dan I just got my results from Igenex the other day +IGG(++31 &+41) -IGM(+18,IND31,+41).The LLMD who recently started treating dd7 ordered the test for me but Im starting to wonder how LL he is,so I dont know what I will do with these results. Where is that dog? P.S. Three cheers for our dogs!!! I know ours is always there to let me pat and hug,never says the wrong thing,and when I cant lay with dd till she falls asleep at night he is more than happy to do that for me too. Angela
  2. Bill I couldnt agree more! My dd7 has been dx'd with TS,Pandas,and now Lyme and like you I still dont feel sure that we have "the answer" With all the different things possibly going on with dd I appreciate info/experiences/opinions on many different subjects. Its a shame that a couple of people here seem to get offended and launch personal attacks whenever they read something that rubs them the wrong way and now people are hesitant and apologetic about sharing.Personally I think most on here(even the Newbies) realizes(or soon will) that we cant follow all the advice we receive here. But it s
  3. I guess Ill go back to my lists of LLmds there werent alot to choose from,a few didnt treat kids,a couple just seemed not really that into Lyme...anyway I will begin the search again. By the way dd came home from school in a horrible whiney mood complaining of pain in her hips/very upper thighs. Now Im wondering is this a Herx? Is something finally happening?! Im anxious and nervous to see what tomorrow brings-hope its not too bad we have sensory therapy tomorrow after school with yet another professional who just doesnt "get it" when it comes to dd,on the bright side I have learned some usefu
  4. Thanks Susan and Momcap for your replies.Well we returned to LLMD(?)and now Im wondering how LL he really is. He acted like putting her on a combo of abx was almost unheard of. He also said he doesnt like to use Bactrim on kids.He did up her to 200mg of Azithro.but I dont think he has any plans to be too much more aggressive in treatment. By the way does anyone know if Azithro. is commercially available without the red coloring? Im also a little concerned that this Dr. thinks "she doesnt have Pandas because she doesnt have high titers"(and the doc that dx Pandas says she doesnt have Lyme) ,I h
  5. I almost posted the same question so I hope you get an answer soon, a website or book on the subject would be so helpful.I too would rather not involve the school,dd7 would have a hard time "walking all the way to the office by her self" and I have a feeling I have some kind of "crazy Mom" reputation because Ive mentioned things they "dont see" or things they have never heard of-Im trying now to not say anything I dont feel is absolutely necessary now I already send probiotics that she takes at first break.She just started sleeping better, and I wonder if disturbing her sleep even tho she does
  6. Well now we can add Lyme to our ever-growing list of Dxs for DD7.Our LLMD thinks dd has cogenital Lyme.He put her on 100mg of Azithromycin,along with Nystatin,probiotic,and Vit.D drops.She is already on a GFCF diet,no artificial colors,flavors etc. We are a month into treatment and havent noticed any changes yet.Doesn't 100mg seem kind of low for 47lbs? Anyone else had treatment begin this way? I was expecting that we would start with some combo of abx.DD is allergic to penicillian,and had a serum sickness reaction to Omnicef. We have our 2nd appt. with LLMD next week. Hoping to hear some of y
  7. I agree!A thread wouldbe great.Especially TV-seeing is believing,for most.
  8. No it wasn't, people on this forum were the ones who said that Lyme can hide (manipulate, change) in your DNA. I simply found an article stating that so can a lot of other things & that it's beneficial. Just another way of looking at bacteria. I think most here are aware of the benifits of bacteria,thats why so many of us use probiotics.But I certainly wouldnt be using one that contained Lyme,just as I avoid ones with Strep.
  9. Did I miss something in this article? I dont see Lyme mentioned anywhere.
  10. Wilma, For years now I have said "Maybe I should take her to the vet" for when no one could figure out why dd kept getting ear infections,my dh said maybe shes allergic to chicken-because his dog kept getting ear infections and the vet figured it out quickly--much faster than dds pedi did! And they dont seem to ? everything we tell them and seem to use common sense more often than most of the pedi's that Ive known. In fact Im going to ask mine to give my cat antibiotics because she used to pull her hair out on her back in a big patch,which she stopped about 6 months ago after she was on antibi
  11. My dd was much younger at the beginning but from the beginning she has been very aware and expressive about what shes feeling saying things like"I know something is wrong,because I keep saying my words over and I dont want to"-about vocal tics. Have you explained (in easy to understand words) the condition to her? I read somewhere something like saying: when we get an illness our body makes "soldiers" to fight the illness and when its gone the body stops making soldiers but sometimes the body doesnt stop making them and they keep on fighting, causing problems like... there are lots of kids who
  12. mama2alex I tried to PM you but it wont go through,Ill try again tomorrow--Angela
  13. DD6 has positive band 41(IGG) also positive 39(IGM) and even though we have tons of ticks in our area, and I have seen a tick on her on several times-no bites that I know of,and dds face looked like that of a stroke victim for about a year-not anymore tho, he doesnt feel any further lyme testing is necessary. But from what Im learning here I think that may be our next step.
  14. Dr.T. said my dd6 has "what he calls"serongative pandas"-based on her low response to the Prevnar vac. She has had very low titers for strep- her highest #of several tests was 11. Im not really sure of what this all means,you should get copies of all the labs he ordered.Although when I looked at ours I just became more confused-because at the bottom of a chart regarding her response to the prevnar vac.there are lines for good,fair,and poor.DD has 3 good,4 fair,and 0 poor. So Im not sure how he came to his conclusion of her being immunodefient.Also at the bottom of the results from Quest it s
  15. Hi this is so good to hear! Even though I must admit that Im embarrassingly computer/techno illiterate and I dont really even know what "Email loop" means, it sound like something I dont want to be left out of-Its good to be "in the loop" right? so add me in! I tried to PM you but it wouldnt go through-you can PM me if you need to. It will be so nice to connect with other families in the state, I have been noticing all the other Michiganders on here lately,so glad you are doing this for us. Angela
  16. Debbie-I just called Dr.T for the first time last week,and 3 out of 3 times he answered the phone himself,so he does seem very "reachable" good luck. Sharon, Ditto to WorriedDads welcome to you! So I assume that Dr.T was helpful to you? I just had my first consult with him last Friday,labs done Sat and now am impatiently waiting for results and wondering of course what will happen next--Its going to be one LONG week!Of course Ive already seen tons of positive mentions of Dr.T here and elsewhere but its still nice to see
  17. Wilma, Is your dd still under the care of Dr.T?
  18. I beleive I saw a post awhile back from TUT about this.
  19. Dedee I just went and tasted dds clo it doesnt really have much flavor Im lucky dd will just take it but I do mix other supplements into flavored(not artificially) applesauce and find the tarter ones like strawberry and pomegrante seem to hide things pretty good.Ive also learned its good to find something-even a new flavor of a regular favorite that shes not familar with,so she wouldnt know there was something in it. Good luck! my dd wont take pills but I guess Im lucky she will take liquids.
  20. Dedee, We are using Nordic Naturals Arctic-D CLO (Lemon-not sure there are any other flavors) and dd says it doesnt have much taste.She takes it and then qiuckly takes a bite of food or a drink.I had been giving it at night because I wasn't sure how the Vit D would effect her tics and after a couple weeks I did notice she seemed a little less hyper,but not much else.Then gave it in the AM Tuesday,got the note from the teacher then no school yesterday so am so anxious for her to get home today ,of course Im praying she comes home with another note saying how focused she was.
  21. Priscilla, Thanks for agreeing with me in your take on my dds teacher.Just to give a clearer image of her I have to tell you shes one of those ******* with that not southern,eastern,or mid-west accent but that "I think Im better than you" accents, it just makes her all the more irritating.But at least shes not my friend being irritating so glad your friend at least made you feel a little better.Its so hard that our friends and family just cant understand.But I have one friend who I know in the begining thought I was a bit on the crazy side but now after shes been around dd enough she does se
  22. I posted this ? on the ADHD forum with no response so maybe someone here will respond.Do you think that giving Cod Liver Oil(Nordic Naturals Arctic-D 1/2 tsp for 42lb dd6) in the AM rather than PM would make very marked improvement in focus at school? I met with dds teacher on Monday and as I expected she suggested we "speak to a doctor about medication for ADHD" On Tuesday I gave dd her cod liver oil before shcool instead of at night,she came home with a note saying she "was focused and completed all her work on time all day. Whatever you said to her sure worked!" I almost could not resist in
  23. Yes my dd has hallucinated a few times,most where at the time of her major onset.At least twice, one time being when she saw an eye on the wall of the shower,she knew that it wasnt real-her words:"I just saw an imaginaiton of ..." But there where a couple of times when I think she hallucinated at school and seemed to beleive that what she saw was real.She hasnt had any lately but does have alot of irrational fears and some social anxieties.
  24. hello I just finished a bit of a vent on the ADHD board regarding dds teacher who also just doesnt get it and "never notices any of the symptoms" that my husband and I tell her about.I just finished a note to her since yesterday in a very typical,aggravating conference she basically told me I should medicate dd for ADHD-that she seemed to think I didnt know dd had-even though the school was given her medical document stating she has add and a tic disorder. She also said that dd did buckle down once and got some math paper done quickly when she was told she wouldnt be able to go with the rest o
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