BeeRae22

I think the present thought in the Lyme Literate community is that doxy simply drives the spirochetes into cyst form.
 
Symptom resolution occurs at this point, but spirochetes can remerge from the cysts causing relapse. This is why antibiotics that address all three forms; the cystic form, the acellular form and the spirochete form, need to be used.

Flmom, Lyme is one of the most difficult bacteria's, as it has/ converts to 3 life forms, and different antibiotics target different forms.
 
This link/ guideline is very helpful in explaining:
 
http://www.lymenet.org/BurrGuide200810.pdf

What medications is your DD taking? Some people can't tolerate medications or supplements that are high in sulfurs.
 
Three in my family have a genetic mutation on our CBS gene that reduces our ability to "detoxify" sulfurs and this puts a heavier load on the liver. I was taking N-acetylcysteine - a supplement good for detox and mucus thinning - and it seriously raised my ALT and AST liver enzymes into the 70's (normal is below 50). I stopped the NAC and re-tested a month later and the enzymes were in the 20s. My DH recently switched his blood pressure meds because one was high in sulfur and his liver enzymes were elevated (haven't re-tested yet). My DD can't tolerate milk thistle for the same reason - tho milk thistle is great for liver detox, it's also a sulfur and it's not the right supplement for her.
 
So maybe it isn't a question of whether the meds are "working" to fight infection, but rather whether they're the right meds for her body. If she still has symptoms, then I'd say you're not done with treatment. Most lyme docs continue to treat until you're 2 months symptom-free. You may instead want to discuss switching meds rather than stopping treatment altogether.

I'd limit the amount of time spent on the details of Pandas - keep it simple - an allergy to strep, a sudden bundle of behavioral symptoms, medical treatments available...
 
But I'd want new teachers to know two things -
 
1. many, many behavioral issues are medical - not bad parents, bad kid, etc.
 
2. always believe in and support the child. Let him know you can see past the behaviors and know that there's a bright, valuable kid inside. Yes, you have to teach to the child's current abilities, but when a parent says their child is "more" than what you can see, believe them and resist the temptation to mentally assign the child to the "less intelligent" or "problem child" category of your students.
 
My son's teachers have been consistently amazed at his abilities and character once they've been able to see the "before and after" kid. The ones who believed me and somehow reached the "inner kid" are the ones who've made a lasting difference. They helped my son build self-confidence and resilience because he know they believed in him.

It is always hard to distinguish, especially when they're young because so many typical PANDAS-y behaviors are considered "developmentally appropriate". Like I said, our son was only 2, so people tended to dismiss his issues as being "normal", a "phase", or just a bad case of the "terrible 2's". However, we knew (and fortunately our wonderful pediatrician and day care director did too), that it was far more than that. It was like his "terrible 2's" were on anabolic steroids!
 
We developed a "test" early on to distinguish what we called "PANDAS vs. punk" behavior (ok, it was more like a coping mechanism - but hey, you have to do what you can to survive). I wasn't proud of it at first, because it went against EVERYTHING I believed in as a parent, but it worked. And eventually we shared the technique with one of our behavior therapists and she thought it was great and started sharing it with other parents.
 
We called it the "wanna cookie" test. (My son was young remember). When he would start to have these uncontrollable rages and outbursts, we would offer him a cookie (or candy, ice cream, toy...whatever was getting his attention at the time) if he would settle down and do as he was told. I know, horrible parenting - BUT - what we noticed, is that when it was truly a PANDAS issue, the offer went completely unnoticed - he didn't care. When it was just age appropriate nonsense, he acknowledged that we were talking treats. Sounds silly, but it helped immensely. Based on that we were able to detect other signs of it being PANDAS behavior (dilated pupils, excessive drooling) that we could use in the future.
 
I know, offering your kid a reward to stop unacceptable behavior should have my parenting cared revoked, but it actually worked.
 
We still use it now that he's older, but instead of a reward it may be losing a privilege like screen time. If he protests the restriction, we know he's just being a punk, if he doesn't care one whit - we know its something more going on.

Thanks everyone... This is still so exciting!!! Yesterday she ate a kid's Subway sandwich and almost ate the whole thing!!! And then I took her to the store (to get more if the chocolate cake!) and you should've seen her.... "I want this" "I want to try that" -- I had to drag her out of there!!!! What music to my tired ears! <3 I was really starting to think this was never going to happen.... I was truly losing hope. In fact, Friday night I had a bit if a breakdown
 
Keep the faith everyone. I know it's hard-- believe me. I am so thankful to everyone on this board

Thanks everyone... This is still so exciting!!! Yesterday she ate a kid's Subway sandwich and almost ate the whole thing!!! And then I took her to the store (to get more if the chocolate cake!) and you should've seen her.... "I want this" "I want to try that" -- I had to drag her out of there!!!! What music to my tired ears! <3 I was really starting to think this was never going to happen.... I was truly losing hope. In fact, Friday night I had a bit if a breakdown
 
Keep the faith everyone. I know it's hard-- believe me. I am so thankful to everyone on this board

Thanks everyone... This is still so exciting!!! Yesterday she ate a kid's Subway sandwich and almost ate the whole thing!!! And then I took her to the store (to get more if the chocolate cake!) and you should've seen her.... "I want this" "I want to try that" -- I had to drag her out of there!!!! What music to my tired ears! <3 I was really starting to think this was never going to happen.... I was truly losing hope. In fact, Friday night I had a bit if a breakdown
 
Keep the faith everyone. I know it's hard-- believe me. I am so thankful to everyone on this board

Happy news and I had to share-- I'm bursting at the seams!!!! Last night dd started eating! 2 pieces of bread, 2 pieces of cake, 2 cookies (even had chocolate chips in them!), a Popsicle, and then a personal sized homemade pizza- ate almost the whole thing!!! This is the most she's eaten since NOVEMBER!!!!!! And she had cake for breakfast this morning, and was asking for more pizza!!!!!!
 
I sure hope this continues. I am so thankful for this victory. It's probably hard for someone who's never experienced this how f@)$&@;king happy someone could be to see someone do something so "simple" as eating!!! I'm ecstatic!
 
Day 12 minocycline.... Coincidence? I think not!!!! Each time she's tried a new abx she's seen improvement at approx 2 weeks, but this is the first time eating has happened!!! I'm sure the CBT has helped (well, maybe, I'm not exactly SURE about that) but I don't think therapy made her suddenly pig out like that. That was too sudden for response to exposure therapy in my opinion. Whatever it is, I'm thankful. And I'll keep doing everything we're doing and hope and pray this progress continues!!!!

Happy news and I had to share-- I'm bursting at the seams!!!! Last night dd started eating! 2 pieces of bread, 2 pieces of cake, 2 cookies (even had chocolate chips in them!), a Popsicle, and then a personal sized homemade pizza- ate almost the whole thing!!! This is the most she's eaten since NOVEMBER!!!!!! And she had cake for breakfast this morning, and was asking for more pizza!!!!!!
 
I sure hope this continues. I am so thankful for this victory. It's probably hard for someone who's never experienced this how f@)$&@;king happy someone could be to see someone do something so "simple" as eating!!! I'm ecstatic!
 
Day 12 minocycline.... Coincidence? I think not!!!! Each time she's tried a new abx she's seen improvement at approx 2 weeks, but this is the first time eating has happened!!! I'm sure the CBT has helped (well, maybe, I'm not exactly SURE about that) but I don't think therapy made her suddenly pig out like that. That was too sudden for response to exposure therapy in my opinion. Whatever it is, I'm thankful. And I'll keep doing everything we're doing and hope and pray this progress continues!!!!

Happy news and I had to share-- I'm bursting at the seams!!!! Last night dd started eating! 2 pieces of bread, 2 pieces of cake, 2 cookies (even had chocolate chips in them!), a Popsicle, and then a personal sized homemade pizza- ate almost the whole thing!!! This is the most she's eaten since NOVEMBER!!!!!! And she had cake for breakfast this morning, and was asking for more pizza!!!!!!
 
I sure hope this continues. I am so thankful for this victory. It's probably hard for someone who's never experienced this how f@)$&@;king happy someone could be to see someone do something so "simple" as eating!!! I'm ecstatic!
 
Day 12 minocycline.... Coincidence? I think not!!!! Each time she's tried a new abx she's seen improvement at approx 2 weeks, but this is the first time eating has happened!!! I'm sure the CBT has helped (well, maybe, I'm not exactly SURE about that) but I don't think therapy made her suddenly pig out like that. That was too sudden for response to exposure therapy in my opinion. Whatever it is, I'm thankful. And I'll keep doing everything we're doing and hope and pray this progress continues!!!!

Happy news and I had to share-- I'm bursting at the seams!!!! Last night dd started eating! 2 pieces of bread, 2 pieces of cake, 2 cookies (even had chocolate chips in them!), a Popsicle, and then a personal sized homemade pizza- ate almost the whole thing!!! This is the most she's eaten since NOVEMBER!!!!!! And she had cake for breakfast this morning, and was asking for more pizza!!!!!!
 
I sure hope this continues. I am so thankful for this victory. It's probably hard for someone who's never experienced this how f@)$&@;king happy someone could be to see someone do something so "simple" as eating!!! I'm ecstatic!
 
Day 12 minocycline.... Coincidence? I think not!!!! Each time she's tried a new abx she's seen improvement at approx 2 weeks, but this is the first time eating has happened!!! I'm sure the CBT has helped (well, maybe, I'm not exactly SURE about that) but I don't think therapy made her suddenly pig out like that. That was too sudden for response to exposure therapy in my opinion. Whatever it is, I'm thankful. And I'll keep doing everything we're doing and hope and pray this progress continues!!!!

Omg- enjoy! let the healing begin!!!

Congrats, mine stopped eating for a few weeks as well.
 
I get thrilled now when I have to tell kiddo to turn the TV down LOL. How many parents grin ear to ear to hear a TV on to loud HAHAHA.

Happy news and I had to share-- I'm bursting at the seams!!!! Last night dd started eating! 2 pieces of bread, 2 pieces of cake, 2 cookies (even had chocolate chips in them!), a Popsicle, and then a personal sized homemade pizza- ate almost the whole thing!!! This is the most she's eaten since NOVEMBER!!!!!! And she had cake for breakfast this morning, and was asking for more pizza!!!!!!
 
I sure hope this continues. I am so thankful for this victory. It's probably hard for someone who's never experienced this how f@)$&@;king happy someone could be to see someone do something so "simple" as eating!!! I'm ecstatic!
 
Day 12 minocycline.... Coincidence? I think not!!!! Each time she's tried a new abx she's seen improvement at approx 2 weeks, but this is the first time eating has happened!!! I'm sure the CBT has helped (well, maybe, I'm not exactly SURE about that) but I don't think therapy made her suddenly pig out like that. That was too sudden for response to exposure therapy in my opinion. Whatever it is, I'm thankful. And I'll keep doing everything we're doing and hope and pray this progress continues!!!!

So happy for you!!!!!!

This is soooo wonderful, and while I am lucky that my child has never restricted food, the victories that we needed to experience sent me over the moon with joy!!!!! So I can understand how you are feeling.
 
Enjoy your victory!!!! I am so happy for you and yours.

I hate to speak too soon, but dd (who has not eaten a meal in almost 8 months now) had a little victory tonight with food! After CBT today (session 12) we stopped at cvs to get her a little "prize" for "being good" (this is debatable! She had a rage episode, but did cooperate eventually) about having bloodwork done this morning. At a previous CBT session her therapist had her eat some pirates booty which she ate, somewhat willingly (a few pieces only) with a lot to drink, and quite a bit of effort. So anyway, I spotted Cheetos puff corn and got her a bag... Well, tonight, wow! She ate half the bag, with nothing to drink! And then at dinner, she had 3 (gerbil sized) bites of pizza, and didn't even pick it apart! This may not sound like much, but the puff corn and these 3 bites was the most food she's eaten at one time in months! And the only solid food she's had has been grilled cheese soaked in chicken soup broth (to the point of falling apart) and she has not varied from that AT ALL, so this was HUGE!!!!
 
So, here comes the question..... Today was day 6 of minocycline. And today she had an extra long CBT session (12th session, was an hour and a half long)-- which has shown 0 progress to date. (She has "eaten" a French fry-- note the word eaten in quotes--- and a pretzel stick once with the therapist in the past, but has not shown a bit of progress at home, at all.
So, I'm looking for opinions! Is this.....a). A fluke . The CBT C). The minocycline kicking in Or d). A combination of the above?? I'm sure I'll never really know, and if the progress continues I'll be grateful for whatever it is, but what does everyone think???
 
We had a LOT of bloodwork done today, retesting and checking. I am really anxious for it to come back.... The only thing we've found so far is myco p, but we suspect Bartonella also.

That's great!!! I know what you mean.... My daughter's school has "town meetings" and she just got selected for the first time, to do a little dance routine in one of the meetings Monday morning... Couldn't have come at a better time- she hates school now, but she's looking forward to going in on Monday! I'm so happy for her, and for your son! We do need to celebrate the little things..... The happy moments should command just as much attention as the rough ones!!

You might be able to get something like Syrpalta. It is a strong, sugary, flavored liquid we used for compounding. It is rarely used straight, it is frequently diluted 50/50 with water. Where I am at, it is still available and does not require a script, but check with your doc to see if that is appropriate for your kiddo and this medication.
 
It would be a strong flavoring option that could better mask the flavor of the abx.

I hear you. I am for sure Debbie Downer as of late. Our world crashed 10/25/13 and am desperate for the health and functionality we once had....knowing there are families with it much worse, I feel weak for feeling so hopeless.
 
How's that for offering encouragement?? Ha. Ha. Hang in there....!!
 
Kristi

http://www.panslife.com/what-schools-need-to-understan/
 
I thought this blog was awesome. I fully intend on sending this on to my daughter's teacher for next year, if I need to. (Here's hoping that she'll be better by then though!

http://www.panslife.com/what-schools-need-to-understan/
 
I thought this blog was awesome. I fully intend on sending this on to my daughter's teacher for next year, if I need to. (Here's hoping that she'll be better by then though!

http://www.panslife.com/what-schools-need-to-understan/
 
I thought this blog was awesome. I fully intend on sending this on to my daughter's teacher for next year, if I need to. (Here's hoping that she'll be better by then though!

My dd also had issues in this area - a few times, during different flairs. Not as severe as some here, but her pediatrician pulled her from school in 2nd grade because of her rapid weight loss - to focus on her health. She is 12 now. Mainly for us it was the fear of choking each time (not just fear, but clearly difficulty being able to swallow). During one flair she would constantly spit because of a hard time with the normal phlegm in her mouth. She never spit prior to the flair. There was one flair where it escalated to extreme ocd of calories. She was checking labels - for calories and expiration dates - on everything. The issues resolved with antibiotics and IVIG. Some of it though did move to a fear of vomiting, which became very problematic for us. But she also had nausea, gerd, GI issues, when not properly treated, or treated at all.