kengela

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

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 sure is nice to have such a vast array of experiences to try to learn from and I think just as important is the emotional support here.I think we should all ignore and not respond to these negative,personal attack posts and stop allowing them to hijack the original posters question.I mean does anyone think someone asking if anyone has tested - from Igenex wants to read 5 pages of debating and personal attacks? I know as I await my own WB results from Igenex I was also interested in RESPONSES TO THE QUESTION,not all the other stuff I read through to see the few posts actually relevant to the original post.

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 useful things there and its our next to the last visit there.Thanks again everyone for your moral support it really does help knowing Im not the only one going through these things,and I hate to think of where dd would be without the knowledge Ive gained from this forum. Angela

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 had hoped that he would be a good Lyme Dr. and had planned on trying to "educate" him a bit on the Pandas subject as we went along but now Im feeling like Im back to square one.I have been considering an herbal approach,which I know this guy doesnt think much of. I have about 1 more week to wait on my Western Blots through IGenex, I think if the tests are positive I will try the herbals on myself first.I just hate feeling like Im wasting time in dds treatment.We have been down so many dead end streets,I just dont like the thought of staying on one dead end for too long. Does anyone know of a good LLMD in Michigan? Angela

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 go right back to sleep is good for her?But its starting to feel like thats the only time left for the things "on an empty stomach".Do you know anything about iron supp.? It says on empty stomach,but Im wondering if it needs to be away from antibiotics,or other supplements? Yes,we definatley could use a book or website on all of this-thank goodness we have this forum! Angela

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 your experiences or thoughts,as is often the case-Im questioning my choice of Dr.s Thanks in advance for any responses, Ive come to trust you parents with experience and it seems like youre the only ones who understand how hard this all is. Angela

I agree!A thread wouldbe great.Especially TV-seeing is believing,for most.

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.

Did I miss something in this article? I dont see Lyme mentioned anywhere.

Where will this be aired?

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 antibiotics for an infected bite. She has started to pull her hair out again- so I want to see if the antibiotics help again and is my guess that he will give them to us, without any begging! anyway did I miss something- do you have a Lyme dx for your daughter? How is she? Better I hope I havent seen you on here as much lately,I hope that means shes doing at least somewhat better. Angela

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 have this(that helped my dd alot-I guess with one so much older you may have to provide proof) and also maybe try to avoid phrases like "wrong with you" maybe it feels like we somehow blame them for things they really cant control.Im sure it must be so scary for our children to be going through this and not being able to control their minds and bodies.I know sometimes nothing we can say can help but I think in some of those times a hug and a "Im sorry this is happening to you,Im doing all I can to help" really helps. I just try to let her know that I love her-- regardless of her problems.

mama2alex I tried to PM you but it wont go through,Ill try again tomorrow--Angela

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.

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 says that "response to pneumococcal vaccination is best accomplished by comparing pre- and post-vaccination antibody levels.A 2 to 4 fold increase in type-specific antibodies measured 4-6weeks after vaccination is expected in immunocompetent adults." It also says "a consensus panel has suggested that individuals older than 5 years should respond to at least 70% of peumococcal serotypes" Her last Prevnar shot was in 05 so Im not sure how this test is still useful in such cases,does anyone else know? I guess I need to do another phone consult with Dr.T. he doesnt seem to answer ?s via Email. He ordered 10 days of Azithro. for a "possible deep step infection" we did that with no change at all,he then said he thought a steroid burst should be tried next,but since Ive been unable to get answers from him regarding the steroid burst we havent done it yet. Did he order any "treatment" for your sons? Keep us posted,and good luck. Angela

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

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 more as I wait for things to get going for us. Also just curious, what if any thoughts did you have regarding Pandas before your grandson becoming affected?

Wilma, Is your dd still under the care of Dr.T?

I beleive I saw a post awhile back from TUT about this.

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.

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.

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 see things that most people dont,and amazingly she does seem to "get it". I hope that maybe one day with the spreading of awareness we will all have friends and family who will understand.Oh yeah and teachers too would be nice.

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 informing this lady that ADHD can not be made to disappear overnight by "saying something" to the child,but would like some feedback from her this week especially so I will add this to the long list of things Ill tell her nearer the end of the year. Anyway I couldnt wait for a report on dd today but she got lucky and had no school because we got just enough freezing rain to cancel school,but it was a nice sunny "pretty warm for Michigan" day. It would be so great to hear that someone has had such luck with this type of supplement,because I know this teacher already thought dd "can focus if she wants to"(yet thinks she needs to be medicated!?!) so now that dd has had a whole good day Im sure now she will really beleive that dd just doesn't "want" to focus.

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.

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 of the class to the computer lab unless she got it done,she did so therefore "she can focus if she tries" so I guess she thinks a child who can focus if she tries should be medicated??Apparently dd had a good day today and I received a note saying dd was"focused all day and completed all her work on time. Whatever you said to her sure worked!" I did not include in my note that ADHD can NOT be talked out of a child,but I am very tempted to add a PS.But I figure theres no point in trying to get through to yet another person who just doesnt get it. Last year I stood outside her classroom and watched her do alot of head jerking tics while she was supposed to be writing her name on a paper that was just handed out. When the teachers aide noticed her name not on the paper she says " Come on Emerald why isnt your name on your paper?" I then see the teacher in the hall and ask is shes going back to the classroom she was so I tell her that Emmys ticcing right now and that I could show her since she also "never noticed anything",DD sits about the mid way into the room we take a few steps in and I see the tic and say "see thats it there" and the teacher is already looking and walking in the other direction. And then when I told her later at a conference that I was very offended by her disregard that day she just sat there and said nothing,no apology, no excuse, just nothing. Boy Im glad she retired at the end of that year,so I dont have to worry about getting her for my younger son.She also once told my husband and myself that she and all the other teachers dont see anything and that she doent know what "us people" do at home but maybe we are making things worse by making an issue of it.I know her husband had heart surgery that year,I wonder how she would feel if someone told her "well I dont see anything wrong with him,perhaps youre doing something at home thats causing his pain and weakness"? It sure is odd how others just dont notice things that seem so obvious to us.It took about 2 weeks for my mother(who sees dd almost daily) to notice a tic dd does with her arms that looks like shes doing the Chicken Dance. To me its like HOW do you not see that??!! Well at least we have this forum to turn to when we are tired of being scoffed at