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mandyknowles

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    Oklahoma

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  1. I just wanted to hear from others who they are seeing for their LLMD. You can PM me if needed..
  2. 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
  3. 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 :/
  4. 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.
  5. I guess I haven't since i dont know what that is.
  6. 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
  7. 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.
  8. 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?
  9. 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.
  10. 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!
  11. 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.
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