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azithromycin


lynn2

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DS14 has had two IVIGs, one in August and one in November 2010. The first one did nothing that I can tell--he got much worse for a while and then got barely back to baseline. He was on Omnicef, got some sort of exposure and went into exacerbation. I tried substituting OLE and the bottom dropped out, then we switched back to Azithromycin and shortly after that had IVIG again. This time, although we haven't seen the major getting worse part, we still haven't seen any improvement. The odd thing is, though, that we have kept the azith up for the whole 6 weeks even though we don't think we have ever seen any improvement on antibiotics, and DS had a stomach ache and I stopped the antibiotic since it appeared that it would just come back up. I didn't start the azith back up again for a while, just gave some OLE in case the stomach problem had been c.diff or something.

 

Rages suddenly started appearing, along with weird scary OCD stuff centering around hitting me (DS is 14 and 6 feet tall.) He never actually hurt me or even left a bruise, but he started to have daymares about really hurting me and how he would feel about that. His anxiety, consequently went through the roof, resulting in even more OCD. This was all occuring while he was trying to excel in his very competitive high school. (His art teacher, a wonderful woman who really likes him, called up and asked why he was continuously trying to start arguments with her in class.)

 

After a while it occurred to me that I hadn't restarted azith. I did that, and everything began to go back to normal. That was 3 days ago, and he is pretty much back to baseline, which isn't exactly great, but certainly better than last week.

 

This was a real surprise. We didn't see any improvement during the first trial of azith and we assumed it was having no particular effect, but apparently we were wrong. In fact, we were beginning to think that he didn't have PANDAS at all but just tourettes sadly complicated with developing OCD. But if the antibiotics are helping, but IVIG so far has not (after 17 weeks from the first ivig and 7 weeks from the second,) then ...what? Are we also lyme candidates? We did quest western blot and myco, with totally negative results. Maybe we need to try Igenex.

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I can't comment about the Lyme, but we were on Azith for quite some time. We saw an immdeidate improvement in the severity of the rages (violence, tantrums, etc...), after that, it was a long, slow, climb on azith to get us to about 70-75% back to normal. At that point we switched to Omnicef - with mixed results.

 

My suggestion is to start tracking, in detail, your sons particular symptoms. Another parent on here, Buster, created a tracking system that has been really helpful. If you writing these things down every day, rate them on a scale from 1-10, maybe even have his teachers do the same, you might see some improvement that is more subtle that you may overlook because the "big" moments overshadow them.

 

I think if we hadn't done that with our son, we may never have seen how much improvement he was really making.

 

Just a thought.

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Azithromycin is our BFF! :D

 

he sleeps

he lets me hug him (doesn't tolerate touching otherwise)

he smiles sometimes

he doesn't have night terrors

he doesn't get detentions at school

he doesn't have the severe ODD

he laughs at my jokes

he allows me to sing in the car without getting really nasty

 

my mother, has also documented these changes, so now I know I'm not crazy!

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I think your initial trail with Azithro was complicated by the hdIVIG and why you might not have seen improvement in those first six weeks. I also believe you are seeing rapid improvement from the antibiotic now that you are further out from treatment. Our son always saw immediate improvement even when going from lower dose to higher dose azithro. I liked to call it the honeymoon period... Our son does have Lyme.

 

Anyway, I feel its vitally important to rule out Lyme and very possible that it could be the cause of illness. I highly recommend seeing an LLMD to properly rule it out.

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Are we also lyme candidates? We did quest western blot and myco, with totally negative results. Maybe we need to try Igenex.

 

My DS was completely negative on standard WB too. HD IVIG did nothing for us either. His Igenex was overall negative but enough lyme specific bands were indeterminate or positive and he had high immune complexes. Based on clinical history, our LLMD started treating for Lyme and Bartonella. We saw rapid improvements and things continue to get better. I cannot say it often enough - if you don't see the expected response to a treatment, keep digging. There's still a missing puzzle piece and when you find it, it's like a eureka moment. You get your child back.

 

Lyme is not scary. Losing your child - now that's what's scary.

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I can't comment about the Lyme, but we were on Azith for quite some time. We saw an immdeidate improvement in the severity of the rages (violence, tantrums, etc...), after that, it was a long, slow, climb on azith to get us to about 70-75% back to normal. At that point we switched to Omnicef - with mixed results.

 

 

 

Airial...can i ask you to expand on this...

the immdidiate improvement..??? would you say over the course of a week -2 weeks...

and then the long slow impove.....over months??? how many...

why did you switch if it was working, though slowly????

so he is still improving on omi???

if not...are you going back to zith??

 

sorry to pick it appaart....i feel like i am reading more and more where it takes many months to recover with abx...and maybe we haven't done any of them long enough(but also, ds gets yeast and other side effects, so we spin the wheel on what we treat sometimes)...also..i will repeat, i was spoiled by prior episodes...where a 10 day course of abx did the job....

can you imagine :wub:

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Well said.... I got all three of my kids back. Unfortunately, all three have been sick from birth so I am not sure what normal or getting my children back 'fully' means (I'll need a couple years to figure that out). I like to say we are having a new awaking in our household.

 

All three of our children were negative via Igenex and positive for band 41 only. We did not discover Lyme until we pursued provocation DNA testing and looked for co-infections. We have one son positive for bartonella and babesia. Its why I often now recommend seeing an LLMD instead of testing independently for evaluation.

 

-Wendy

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Thank you all very much--I don't know what I would have done without all of you. So I think (if I can convince DH)I should check with Igenex. I did get the ILADs list of LLMDs, but I trust you all more than them, so does anyone have an LLMD to recommend in the NYC area?

 

Lynn

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Airial...can i ask you to expand on this...

the immdidiate improvement..??? would you say over the course of a week -2 weeks...

and then the long slow impove.....over months??? how many...

why did you switch if it was working, though slowly????

so he is still improving on omi???

if not...are you going back to zith??

 

 

No Problem! - This may be long though, sorry.

 

Within 7-10 days my son was no longer violent. Prior to starting the azith, he was biting, hitting, kicking CONSTANTLY! We were getting 2-3 incident reports A DAY from day care (why they didn't kick him out is still a blessing we're thankful for!!) Just as quickly as the violence started, after about 7-10 day it stopped. We were still having severe rages and tantrums, but the pysical attacks associated with them stopped. After about 2 weeks, the severity of the rages decreased as well. They went from lasting hours (literally until he just wore himself out and fell asleep) to lasting only about an hour, two at most. I know that still sounds bad, but prior to the azith, we were looking at 4-5 hours, nothing less than 2 EVER!

 

From there, we saw little by little continued improvement. We feel most of it was a result of the azith, but he was also being more verbal again (he regressed significantly verbally during his initial onset). So he could tell us that his paper towel at breakfast was "broken", or that something was "wrong" helping us to identify, and avoid someo of his OCD triggers.

 

We were on the azith for 3 months at a full dose, and then dropped to half dose when we passed the 50-60% improved mark. At that point, we were still dealing with some tantrums and rages, but all about an hour or less, and his major OCD was now limited to a few select rituals during the day - which also triggered most of his tantrums.

 

I will say, once we switched to the low dose, the progress did slow. We got to about 50% within 3 months, and then it took another 5 months to get to 75% or so. I can't attribute all of that strictly to the azith dosage though, because at the same time we started CBT/ERP therapy. That can sometimes make things "worse" while trying to make them better.

 

We ultimately switched because he caught strep 2x while on the low dose of azith, so Dr. Murphy thought it was best to switch. Once we switched, we got a little bit better, but not much. I feel like we've stalled on the Omnicef. They took him off last week as a trial, it hasn't been as bad as we expected - but it's definately no picnic either!

 

The type of improvement we saw between the two abx was different as well. With the azith, as he improved we would have longer and longer stretches of time (I think 10 days was our longest) between "episodes". His OCD would still be there, but it was limited to only his breakfast ritual, and if that wasn't messed up, he'd be fine. However, if he did get "set off" (something went wrong with his breakfast for ex.) the entire day, if not two would be shot - he'd be emotional, on edge, set off by every little thing. On the Omnicef, we no longer saw those periods of calm, we would have a few "episodes" per week, however, the duration and severity were significantly less - an hour or two at most and we were done, no more issues. Personally, I sort of missed the longer periods of down time - it gave us time to recharge too.

 

I think the biggest impediment to our particular recovery is how sensitive my son is to exposure. On both abx, if he is even exposed to someone with strep (without catching it himself), we go back to almost square 1 immediately for several days - and then it takes a week or so after that to get back to "baseline" - or where we were before the exposure.

 

The dr just ordered a full immune workup on him to see if there might be something else lurking about in the wings, and for the first time she mentioned IVIG - which we'll talk more about at our appt on Wednesday.

 

Hope any of this helped, and if you'd like, you can always PM me to chat!!

Edited by airial95
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Thanks so much for taking the time to give a long reply....i think the key and aha moments are in the details!!!

 

just a thought....have you thought about going back to zith full dose...its been awhile..his body got alittle rest..and maybe before ivig..it might be worth a shot.....maybe you'll know in a month if its having any further benefit?...maybe the omnicef cleared out some other things and zith can go back and attack the rest...you'll probabley have a little time before ivig gets approved......just thinking of it like a chess game

 

i will definietly be taking you up on the chat :)

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If we go back on the abx after our appt next week, I think I am going to ask them to switch back to azith. I liked our progress better on that.

 

He had a real rough few days starting about 36 hours after his last dose of Omnicef last Tuesday morning. Then, after raging himself to sleep Sunday at naptime, he woke up from his nap just fine, and we haven't had a single issue since (no tics, no OCD practially at ALL - it's kinda strange). We don't know what's going on, and aren't sure we really care as long as it lasts!! :P

 

Our follow up appt got moved from today to next Tuesday, which gives us more time to watch and see what's going on.

 

Send us good vibes that this change lasts!!!

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Hi Airial - We love Murphy. We did azith for a long time with solid improvement, but still blips with exposure - much more evened out, however. We recently increased azith, although we still do a 4 day a week routine and boost it up when exposed. The increase (she is 9) was significant, and she now is 99.9%. I would say 100 but, you know the drill.... She has had 3 exposures to strep in the classroom with no problem. We are just having our first major respiratory illness, which are usually awful for her, and are seeing ZERO OCD on this time - she still ist getting the stomach aches, but could care less about the whole illness, and is still happily bopping about the house in the holiday spirit. I am amazed. We are not even doing Motrin at this point.

 

I am not sure what Azith does for us, but at the right dose, it seems to balance her out, and prevent the exposure cycles. If she gets strep, I think we would add a second abx, but I would be very hesitant to take her off. I don't necessarily think the azith is the answer to avoiding all strep, but it is doing something else for us - something really awesome.

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What is the lyme test in Ontario Canada called?

 

You can get the ELISA or Western Blot in Ontario. Here's an article explaining the Western Blot:

 

http://www.lymenet.de/labtests/brenner.htm

 

You can also send blood to specialty labs in the U.S., like Igenex or Quest. But that will be out-of-pocket and probably at least $500. More if you do co-infections. Plus these tests are considered controversial by some. We've opted to do it anyway, since DS7 has had issues since birth, and hasn't responded as expected to PANDAS treatments. We're waiting on results right now.

 

Good luck!

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