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