mandyknowles

I just wanted to hear from others who they are seeing for their LLMD. You can PM me if needed..

nope. no change in abx. added stuff for iron and vitamin d3. she had mycoplasma before but apparently she hasnt gotten rid of it. its so freaking frustrating. now we see a blood dr in a few weeks. who knows what we will find out then

ok so we have new labwork...see if yall can speak the language ASIALO-GM-1AB 1:3200 H MYCOPLASMA IGG 1.42 H MYCOPLASMA 1GM 782 H GLUCOSE 116 H AST 32 H IgG SUBCLASS 1 344 L IgG SERUM 560 L WBC 3.7 L ABSOLUTE NEUROPHILS 1480 L IRON, TOTAL 167 H IRON BINDING CAPACITY 458 H FERRITIN 8 L C3D IMMUNE COMPLEX 28 H IGENEX IGG RESULT ON WESTERN BLOT POSITIVE!!! (FIRST TIME YET) I JUST DONT KNOW WHAT ALL THAT OTHER STUFF MEANS :/

what doctor was this?

I was just wondering if anyones kids play sports. My oldest is too sick to play but my middle child i have just started in softball. She has some severe leg pain at times, but alot of the time she is still able to play. Usually i give her motrin before a practice or a game and she does good but then again alot of the times afterward she is so tired and her legs start to hurt again.

I guess I haven't since i dont know what that is.

What stuff should i add?

I always thought it was more common to switch abx after a period of time rather than stay on the same combo for a year. What does your dr say when you ask about changes? Funny you talk about all the other stuff as Pandas and not lyme. After 6 months with no OCD, no obsessions of getting stuck on an idea, months of decent handwriting - last week in a bad herx, all this came back for DS. And yet, not even a chance of strep or exposure. Increased our detox efforts over the weekend and much of it went away again. So what I've always considered "Pandas" symptoms might actually be 80-90% TBI symptoms - maybe everything except the piano-playing fingers and maybe - maybe - the echolalia and tics that went away after pex. To me, it's all just one brown mud puddle now. I couldn't begin to say what's "just" Pandas and what's "just" lyme. The more I learn, the stupider I feel. He just says why fix whats not broken? yea so im like she is sick, its broken...but he just wont change them. So, Idk, Im thinking of changing drs

I am guessing these are aimed at borrelia (lyme proper) and not the coinfections? Borrelia relapse is frequently slow, as their life cycle is roughly 4 weeks. So, 3 days off would not necessarily make a big difference in terms how she feels. That said, I have started taking weekends off abx and the first two times, the Sunday and then Monday were a bit rougher than normal. Now, I am treating lyme and bartonella, so that could've been the bartonella coming back quickly, which it is known to do. It is always possible the abx have done what they're going to do for her. Aside from energy testing that, the big question is, are symptoms continuing to get better or not? Nope. At a stand still. The only issue she has at all is the jerking and chest spasms. so, i call the dr and he says, just keep her on her meds till u go see the heart dr. it seems a little ridiculous to me though, since that is the only symptom she has at this point. well, other than the handwriting, studdering, rages at times, but i am thinking that those are all Pandas symptoms and not the lyme. But, I am no doctor either.

Ok, so my daughter is on 3abx (zith, augmentin, and minocycline), and i forgot to fill one of them over the weekend so she went for 3 days without one, and there wasnt a difference at all. There really never is a difference anymore on these. I have talked with her dr about changing them up but he has kept her on the same ones for over a year...Could she be immune to them by now, or just getting better all together?

Mad isnt even the word.

Thanks!! yea its pretty crazy!!

She was in shock that it was even in there. I was in shock, too, because it was like a year ago that i took her there...and this is the first time i am hearing about it.

So, today I talk with our SS attorney and she wanted to ask me some questions about Cassidy. During this time, she asked me did I know that they have in her chart at one hospital that I was thought to have Munchausen by Proxy?? I said "um no"...so the more we talked the more mad i got. I know this kind of thing happens in some places, but really?? We already had a lyme diagnosis at the time we went to this er, per psychiatrists request(she said that was the quickest way to see her, and get into her office)....well, they wanted to put her into a mental institution and i told them no and we left...And then I find out they put that crap in her records!! I am so freaking mad right now i cant even see straight!

Her chest hurts, yes, after i have to breath in her mouth because she stops breathing...its a very insane thing and all her lyme dr can tell me is that he sees it...after a year and a half of this, im taking other measures since he doesnt tell me what exactly to do for it.

Was the age regression gone before the IVIG? Was the IVIG done to address the chest spasm/breathing issues? Glad to hear some things have gotten better, but those breathing issues sound so scary! I wanna say yes the age regression was gone but its been so wierd i cannot remember...and yes the breathing is really scary...i hope there is something the cardiologist can fix

Hey Guys its been a while since I have been on here. Just wanted to give an update of where we are in terms of the pandas and lyme. My daughter still has the chest spasm, quit breathing, jerking issues. We are waiting to get into a ped cardiologist because apparently her heart "paused" for too many seconds! DUH, i have been telling drs this for a year now. The age regression is GONE!!! That is the best part of all this. I thought I was going insane. As you all know, we had the IVIG in August and I couldnt really tell a difference in her, so we probably wont do another one, since it cost me so much and there wasnt a difference. She still isnt in school and they finally got her IEP up and going so that is good news as well. Overall, the only issue she has at this very moment are the breathing issues, so we will see what happens next.

The purple lips make me think of not enough oxygen. My dd's cardiologist had me look for "blue" lips when she was younger. How does she feel otherwise? When did it start? I would ask the doc about it today. Susan PS.. Soooo sorry about the ankle too..... see we havent been to a cardiologist yet. she said she felt fine but i was worried.

Well my daughter has a fractured ankle, but that is the least of my worries...So, she says she is hot, but her temp is 96 and her lips are purple...Anyone ever had this??

Yea there is a chiropractor here that alot of people go to and they say he is a healer. I am thinking of trying to get her in to see him soon. He may be able to help her alot with the pain and stuff. Dr Jones has been a God send to us as well. When we first went to him she was using a walker/wheelchair and her legs hurt so badly. A year later she is doing much better. Of course she has setbacks and she has the heart palpitations but we have dealt with that for so long its like a daily routine. I breath in her mouth she jerks a minute and we go on about our business. This year she actually got to hunt and carry her own crossbow and rifle, which is amazing. Last hunting season she couldnt even sit up on her own. So yea she has come a long long way from first getting sick.

Well, so much for the approval...after it was done they denied it...apparently something in the doctors notes. So, there's a 10k bill out there with my name on it...Any takers? lol

My daughter has very bad joint pain in her knees. She has had that since she first got sick, which was in sept of 2009. It could be a herx I guess...who really knows with this whole disease? When is he being tested?

Emerson that movie was awesome and i cried. my daughter has so many of the symptoms on there it is unreal. I am gonna show it to my dad because he had the nerve the other day to tell me that she didnt want to go to school...really drives me nuts

We had this problem with drs wanting to diagnose my daughter with CD and they tried several times to put her in an institution for that. I refused!! They told her that she had that and it didnt improve her symptoms at all. She still couldnt walk, she couldnt sit up, etc. I literally had two psychiatrists tell me that when physicians cant figure it out, they blame it on that. I believe that. Texas is a perfect example of a place where they believe in none of this and will do whatever it takes to make people think they are crazy...I am the crazy one having to deal with all this, not her!

So, here we are planning a trip in May to CT to see Dr J. oldest has a followup and the other two are new patients. Middle child with + WB and youngest negative, but they want to see him because there are 5 in the family with a positive test....That = lots of money! Anyway, last month the oldest had a bad flair up and they took her off meds for a week...well,now we are in another flair up to where she is jerking constantly. She was also diagnosed with Pandas, and her neuro gave her clonadine(sp) and only told me to give it when needed. So, we have been doing it for the past two nights, and it seems to help at night but she is still jerking pretty bad through out the day...I am completely going insane with this mess..how can one have such jerks like seizures but have nothing to prove its messing with her brain? i mean, dont get me wrong, i am glad its not hurting her other organs so far but %&*!...it would be nice to have a few answers. It sucks to be so far away from the dr and have this crap going on, where in Oklahoma they just dont think we need more meds or they need to be in a mental institution. It makes me want to move closer to a dr who will believe us on this crap. Ok great venting lol