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A few days ago, I posted about being discouraged, wondering if we were doing the right things, since DS had been struggling for the past 2 months. I was frustrated because this was happening despite 4 abx. So we took 4 days off from omnicef last week - saw no change for 3 days, then a worsening of tics on day 4, so we resumed omnicef. But we skipped tindamax this weekend. I'm happy to say his prolonged struggles may have been because of, not despite, 4 abx. His tics stopped yesterday and his mind was very clear. He felt better than he has since January. So I am back in a comfort zone as far as feeling it's lyme/bartonella and that it was indeed a long herx.

 

When we switched abx in March (dropped augmentin, added omnicef), we saw an immediate worsening (tics for the first time in 18 months). Ok, herx, I thought. Then we added tindamax 2 weeks later (and for two weekends, I mistakenly gave a whole pill for 4 days instead of cutting it in half for each dose). When we hit 7 weeks and things weren't improving, I started to worry. I'm now theorizing that we probably started tindamax too quickly after switching to omnicef and we flooded the system with die-off and the body just wasn't able to detox fast enough.

 

So for anyone new here that I may have spooked, sorry. I generally don't like to post so quickly about improvements, but didn't want my last post to hang out there without the update. To see my son emerge again - no words to describe the relief and happiness. He pulled out a lego robot kit last night and sat at the table building it with my husband. This is something he loves but will only do when he's coming out of an exacerbation - takes concentration and processing skills he doesn't have when he's in an "episode". So it's always like seeing the first robin of springtime when he wants to build things.

 

Think we'll enjoy this for a few weeks then add back some tindamax - but probably at a lower rate. To think that someday, these great days could be the norm instead of the exception...hard to imagine.

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That is the same reason that I feel like we are on the right track with my dd. Twice we've stopped antibiotics for a day or two and pretty quickly her symptoms begin to diminish. so yes, herxes can last a really long time. It just sucks. Dr. J really wants my dd to stay at the antiiotic dose she is on despite her struggles. Part of me would like to slow down treatment. But we're hanging in there for now. The Ativan definitely helpes her get to sleep a little earlier. Last night was a Tindamax night and though it was more difficult than the past two nights since we started Ativan, it wasn't as horrible as last week and it was tollerable. It was a later night, but we started later too. Still a decent improvement.

 

Hang in there.

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This is great news, Laura!

 

Not only the welcome breath of sweet spring air, but the relief that comes with logical evidence that affirms what you are doing to heal him and why. You will have a renewed strength to tolerate the tougher times because you are not second guessing yourself.

 

Awesome way to start the weekend, TGIF!!!

 

Jill

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LLM- Thanks for posting your update. I need some strength right now. Since mid-end of January, we have spiraled back to my daughter's baseline before lyme treatment. She is not at her worst, but back to where she was in September. I hold onto the hope that even though she has regressed, we did see her at the best she's been in two years, prior to this happening. Just need to get her back there again! Her doctor increased her Minocin, but haven't started it yet, because she has a cold and is SO emotional. Tonight begins the weekend Tindamax so we'll probably wait till next week.

 

When you start the Tindamax back up, it might be wise to take it slow. Maybe begin with 1/2 tablet...see what your llmd thinks. We recently took a break from it and my daughter had a really, really difficult time when she resumed it. She started with one tablet.

 

I can't wait until this is your NORM all the time!! Yay!

Edited by philamom
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Fantastic update!!!! And, I can totally appreciate your fears regarding the TICS returning. We've had 100% remission of TICS too (predominate symptom at sudden-on set) on several occasions only to have them return as a herx response... 12 weeks first time and now 19 weeks so far this time (I thought for sure the second time would be shorter in length... not the case). FINALLY it appears like the last TIC is resolving but not completely yet. I've also noticed we have an increase in mood liability when he gives up the TICS. Its a very clear pattern for us and hope to understand from our Dr. why its happening. BUT, he continues to emerge a healthier child with each passing herx. What is shocking is just how much 'infection' was still present after all the aggressive PANDAs treatments. What is also surprising is how easily he herx'd from anti-virals and many of the herbs added and not just antibiotics.

 

You would not be alone with your experience with Tindamax. I'll be interested to know what happens when you restart again. Please update then too.

Edited by SF Mom
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Thanks for the update! I`ll admit it, you scared me. But not enough to stop me from pursuing lyme. I think it`s the best option we have at this point. It`s a good thing to know the healing journey is up and down. I mean, to really know it by hearing someone living through it. I appreciate your posts and the raw honesty that came up in the last one. When I`m in that place of doubt I will think of you and remember that you got through it and we will too.

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Fantastic update!!!! And, I can totally appreciate your fears regarding the TICS returning. We've had 100% remission of TICS too (predominate symptom at sudden-on set) on several occasions only to have them return as a herx response... 12 weeks first time and now 19 weeks so far this time (I thought for sure the second time would be shorter in length... not the case). FINALLY it appears like the last TIC is resolving but not completely yet. I've also noticed we have an increase in mood liability when he gives up the TICS. Its a very clear pattern for us and hope to understand from our Dr. why its happening. BUT, he continues to emerge a healthier child with each passing herx. What is shocking is just how much 'infection' was still present after all the aggressive PANDAs treatments. What is also surprising is how easily he herx'd from anti-virals and many of the herbs added and not just antibiotics.

 

You would not be alone with your experience with Tindamax. I'll be interested to know what happens when you restart again. Please update then too.

 

 

I had to say that I also see a mood liability increase whenever tics decrease. I have seen my son seem his sickest sometimes when the tics totally stop. Its so strange but it is a pattern. Its interesting that others experience this.

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Thanks for the update. It really helps me to be able to read/hear of ppls experiences. The good/bad and the ugly. It gives me deeper insight into what is going on. What I can expect. Or is this happening to anyone else? I am new, and it is scarey just starting out and not really knowing what to expect. Heck I was in tears today over the medication. Did the pharmacy give me the right dose? etc. We just had our first LLMD appt on Wed. On the way home last night DD started to flare & crazy hit my car and home since.... I'm assuming somewhere during the 12hr drive that she picked up strep and is in the midst of a pandas flare because she has not been on meds for that in over a month. Was so happy to have Amox/clave as part of the meds so we can work two birds at the same time. Please keep us updated. I look forward to when ppl post.

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I'm happy to say his prolonged struggles may have been because of, not despite, 4 abx. His tics stopped yesterday and his mind was very clear. He felt better than he has since January. So I am back in a comfort zone as far as feeling it's lyme/bartonella and that it was indeed a long herx.

 

 

LLM -- happy to hear you are enjoying some good times!

 

still always trying to figure out the herx issue. ds6 had a horrific herx-like reaction to an anti-viral last july. he is back on that same med -- certain ramp up in hyperness and repeating words. tomorrow is day 11 -- last time when he began with hand washing, 'surgeon hands' and non-eating. i'm confident we are not going to see such extreme again -- dr didn't think so b/c he'd already been on this med. although we've seen ramp up -- it's different. don't jinx me famous last words! anxious to get to the other side. i know typically it's said herxs should not bring on new issues. this was all totally new for ds. it came on and melted away without regard for our interventions. our dr believes it would have come out at some time in the future as a symptom had we not been treating him -- kind of just hadn't presented yet. i'm now totally confident this was brought on by the med in a herx type manner.

 

so, i feel we've experienced, lived thru and now reliving herx.

 

curious to hear thoughts more about ds9's experiences. he had what i now believe to be a negative experinence to either type or amount of probiotics. the company suggested d-lactate free product and when i researched, he seemed to be having classic reaction. about 2-3 weeks after starting, he had inability to concentrate, agitation, carb craving, 'unhappiness', irritabilty. after i took him off, a bit of a rocky road b/c i added in s. boulardii at some time after taking him off first probiotic but he had improvement, then decline and now extreme improvement when off all probiotics. however, all these are also TBI symptoms. at first, we thought he was having a symptom morph due to TBI treatment. now, i feel quite confident it was a poor reaction to probiotic.

 

however, another million $ question in an illness where there are so many -- how do you determine if it is in fact a herx or a reaction to medication or combo of meds? a herx would indicate need for more of the med b/c it is doing something positive; a poor reaction would indicate get off the med.

 

so, for ds9 -- was the probiotic a bad combo for him that he shouldn't take or was it an indication that he needs something? we see an integrative MD who does a form of ART and ds has an appt in 2 weeks so we will hear what he believes about current state of infections. ds is clinically doing great right now -- physical symptoms gone, focus back, generally happiness back. but, you know, always have to be thinking and researching!

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I've been thinking the increase in mood liability as a lower level symptom 'he is getting better'. BUT, Its such an obvious pattern.... I can't help but think there is something to it. I plan to ask Dr. this Thursday to see if he has any perspective on the issue. Tics resolve but mood is worse. He'll go from perfectly happy for months to falling apart regularly.... typically 'after school/early evening' when he is tired. I let you know if I find anything out about it.

 

-Wendy

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Thanks for the update. Needed a boost of hope as well. Took DS4 to the pediatrician and he was a total mess, back to the beginning: kicking me, calling me names, not sitting still, rolling on the floor, grabbing at things. I was mortified! And this following an article saying how great he was doing! Ahhhhh! Anyways, we went into appt. with a throat clearing symptom re-emerging. I ignored it, had the terrible visit and then the tic became worse the rest of the day. So, clearly something wasn't right. Not sure what triggered all this but hoping it passes.

 

I was SOOOO discouraged. So the positive updates can mean so much! There is light at the end of the tunnel???? right???

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Thanks for the update. Needed a boost of hope as well. Took DS4 to the pediatrician and he was a total mess, back to the beginning: kicking me, calling me names, not sitting still, rolling on the floor, grabbing at things. I was mortified! And this following an article saying how great he was doing! Ahhhhh! Anyways, we went into appt. with a throat clearing symptom re-emerging. I ignored it, had the terrible visit and then the tic became worse the rest of the day. So, clearly something wasn't right. Not sure what triggered all this but hoping it passes.

 

I was SOOOO discouraged. So the positive updates can mean so much! There is light at the end of the tunnel???? right???

Darlene - know how you feel. Thru a strange twist of events, I was able to get an article on Pandas published, at a time when DS was improving, and I wrote how well he was doing, what a great experience pex was...then by the time the article was published in January '10, DS was dealing with another episode (in hindsight, TBI but I thought it must've been from exposure to strep). Later last year, I presented our experiences at two conferences, just prior to and just after IVIG...still firmly believing that we were only dealing with Pandas and that we were still on the right path, just needing a different, aggressive treatment (even tho my best friend had started suggesting I look at lyme). By last fall, I felt pretty embarrassed. Here I was speaking like I had answers but couldn't seem to keep my own son in a good place. There was (and is) still so much I needed to learn. On one hand, you feel the need to go public so maybe others don't have to make the same mistakes you did, but on the other hand, you're not out of the woods and are still following the elephant in the parade, at risk of being pooped on at any time.

 

I'm really sorry you had such a rough time at the doctor's office. I look back and despite the past rough two months, yes, the times in years past were worse. We are making progress. It's just hard to see sometimes. And you have to remind yourself that even 4yos without lyme sometimes mortify their parents in public. (So do 8 yos). Be vigilant, take good notes, then try to let behaviors guide you more than an idea of what "should be" happening. My biggest regret is trying to make all symptoms "fit" into the diagnosis I thought we had and not paying closer attention to what didn't fit. That's why my confidence was rattled these past two months - I don't want to be married to TBIs to the point I miss signs to the contrary. For now, DS has made much more progress with a lyme protocol, particularly academically, so we'll stick with it as long as it helps. But I'm trying to be more balanced this time around.

 

And speaking of "speaking too soon" - I said I normally would've waited longer before posting a positive update but wanted to reassure newcomers. I did see a few tics last night (tho none during the day and none yet today). They are definitely diminishing, but not gone entirely. And Lismom and Wendy - seeing the same emotional lability and a mild case of adhd today. Still far better, but just enough to let you know it's not done yet. Heaven forbid I should get comfortable with the idea of "normal" or "well-adjusted". ;)

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Wow, TICS improve and mood liability is often coupled with talkative/manic moments..... much, much more mild episodes now that the we are further into treatment.

 

When we were treating for PANDAS I was focused on remission of TICS/OCD. Now that we are treating for Lyme I am seeing all that little stuff resolve too.

 

LLM: I remember reading 'Saving Sammy' and she mentions her friends child suffering from similar 'OCD/TICS' and being diagnoses with Lyme...... At the time, it caused me pause but then I didn't think it applied and only thought it strange that she mentions it in the book.

 

-Wendy

Edited by SF Mom
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We have been going through something similar with my ds11. Within the past 6 weeks we have had an increase in emotional outbursts. Striking out in baseball, he will cry at the plate or if something is bothering him, he will have a complete meltdown. This is very unlike him. We started A-Bart about 6 weeks ago so I'm wondering if this is a lonnnnggg herx or if we should stop the A-Bart for a few days. LLMD is out of town until Wednesday so may just stop it and see if the outbursts improve. Yesterday we had no eye tic and happiness and then today it is back with the mood issues. I feel like we are creating a new set of problems while trying to get rid of Lyme.

 

I've been thinking the increase in mood liability as a lower level symptom 'he is getting better'. BUT, Its such an obvious pattern.... I can't help but think there is something to it. I plan to ask Dr. this Thursday to see if he has any perspective on the issue. Tics resolve but mood is worse. He'll go from perfectly happy for months to falling apart regularly.... typically 'after school/early evening' when he is tired. I let you know if I find anything out about it.

 

-Wendy

Edited by justinekno
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curious to hear thoughts more about ds9's experiences. he had what i now believe to be a negative experinence to either type or amount of probiotics. the company suggested d-lactate free product and when i researched, he seemed to be having classic reaction. about 2-3 weeks after starting, he had inability to concentrate, agitation, carb craving, 'unhappiness', irritabilty. after i took him off, a bit of a rocky road b/c i added in s. boulardii at some time after taking him off first probiotic but he had improvement, then decline and now extreme improvement when off all probiotics. however, all these are also TBI symptoms. at first, we thought he was having a symptom morph due to TBI treatment. now, i feel quite confident it was a poor reaction to probiotic.

 

 

SmartyJ, I am looking into this again for dd8 but in reading up on it today, I read that one of the symptoms is Nystagmus (involuntary eye movement) and this is one of the things that caused dd9 to have to get an EEG last week. Do you use a probiotic that is d-lactate free? If so, what do you use? Or what do you do for probiotics/gut health now?

 

Thanks,

 

Susan

Edited by Suzan
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