could this be herxing..i'm scared!

[Fixit]

Ok

9 days ago son started levoxyl for thyroid

8 days ago son started 500mg clarithromycin for myco p .....so we are really 8 days in

7 days ago son started a 5 day burst 40 mg pred

 

at start i noted his tics which are a bit more than moderate a solid 7 on a scale of 10(a good 300 tics an hour) ....i made this my sons 10 hoping it wouldn't go any higher

 

and i want moon for my son so i was looking for a reaction 3 hours after 1st dose

 

day 1 no change

day 2 purple under his eys and remember we started pred this day

day 3 tics may be less intense but? after 8pm started to clear throat, and a rasbery/horse flap

day 4 had sore throat in morining tics same as yesterday...not sure if i heard a high pitch scream while playing, but it is his b-day...excited??

day 5 said he slept good and hasn't done that in ages but intensity of tics back up

day 6 up through night sweating,,i hear scream chirp when exicted.(maybe every 1/2 hour)..we've never had this before...i'm freaked

day 7 that scream tic there but it's so not noticalbe but to me maybe 1x every 1/2 hour but motor tics down 15%ish

day 8 that screech is picking up ..just came home from school...i said it's ok...he said it feels like something is in there...i said is it a tic, he said i'm not sure..motor tics still down 15 % so maybe he's 8.5 from his 10...BUT THAT SCREECH....gave him l-carnitine last evening and just now....

i see l-carnititne is a fat burner..myco p uses fatty acids to thrive....is that why its supposedly good or vocals

And i dont' want to read into this and it may be early but his mood SEEMS better....i'm scared of the vocal

I just checked o him and its' pretty constant right now....what do i do?????

 

AND IS this HERXING????? Can it get worse before it gets better

[thereishope]

So he started the new antibiotic and the steroid around the same time? That's going to make it harder to see what's affecting what.

 

Some have said that there might be an occurrance of worsening before getting better with Mycro P. There was a recent thread about that. Did you read that one or do you need a link?

[Fixit]

So he started the new antibiotic and the steroid around the same time? That's going to make it harder to see what's affecting what.

 

Some have said that there might be an occurrance of worsening before getting better with Mycro P. There was a recent thread about that. Did you read that one or do you need a link?

 

I DEFINITELY NEED THE LINK TO HELP ME COPE.......he wasn't on any abx or anything other than vitamins and minerals...only abx was at onset 4/7/09 10 or 14 days cephlex 250mg 2x son at that time was 74 lbx, so wrong drug and low dose ....i haven't been able to get any other abx since and it's been 11 months

 

A friend of mine who i just bent his ear (and he's one of the smartest people i've ever met and i think i've met some smart people...maybe that's why i feel so dumb) said would almost definfiely get worse before it gets better with the toxins and gases etc ..he's not a doc but he picks up stuff by reading it once....and he's dealng with some adhd stuff with his kid

 

Did other people think it got worse other than a cough....did anyone dealing with anything here at Pandas feel like things got worse prior to getting better even when they were on the right abx or other med??????? PLEASE

 

 

Maybe 10 % better in tics is what i meant....i don't even know anymore

 

Someone PLEASE!!!!!

[thereishope]

Here's the link...

 

http://www.latitudes.org/forums/index.php?...c=7170&st=0

 

This is the response where I read about the worsening of symptoms from die off. And it is more than a cough. It seems like PANDAS symptoms might worsen. I think it appears on the 3rd page of responses. It also discusses how steroids might worsen symptoms if it is Mycroplasma. Let's hope this is the worse and you will soon see better days. Unfortunately, I think we'll learn more about how Mycro P PANDAS patients react and recover from the current patients (like your child) who are just beginning treatment now.

 

Also, I want to add for any who aren’t aware, when you have myco, lyme, or other infections mentioned above: When you begin antibiotic therapy you may have what is called a herxheimer reaction – this is a period of worsening symptoms due to the die-off. You should then begin to see improvement (given that you are on the right combination of antibiotics). I believe that treatments such as IVIG may also be used when antibiotics are not offering complete cessation of symptoms. Most often, the right combination of antibiotics administered by a really knowledgeable doctor will make vast improvements in symptoms. (and I am all for moving from antibiotics in the critical stage to other natural treatments later -- but just wanting to make the point about initial antibiotic treatment).

[kcdc3]

Oh, yes. Things got MUCH worse before we saw them get better. My dd's tics and OCD went way out of control. I had to pick her up from school last Friday. She raged for 3 hours, was very depressed and then wanted to just sleep. She did all sorts of weird things that day. Then, a day or so later, she was like a new kid. Tics were gone (almost completely) and OCD went down a few notches. This lasted for a solid 3 days and then her tics came back a little (emphasize - a little) on Wednesday and her OCD went back up a bit. I still consider her as having some progress ... hoping this is the sawtooth pattern of recovery.

[PacificMama]

Hi,

 

I also wrote the other day about the "herxheimer reaction" -- this is when symptoms initially worsen when a person begins antibiotic treatment. This would be in the case of lyme or myco. Then you begin to see improvement if you are on the right course of abx.

 

However, if you are dealing with lyme or myco, then steroids can make the condition ultimately worse (even if there is an initial relief from symptoms, ultimately steroids will precipitate a decline).

 

Sorry you are going through this... I hope you see some improvement soon.

[faith]

Fixit,

sorry, could I understand better?

 

you started clarith for mycoplasma? tht was found in your son recently? how long on that right now? how long is it supposed to be, an month?

 

why did you do a steroid burst? is the screech a new type vocal?

 

when did the vocal screech come on? before, during, or after the steroid?

 

 

re the worsening before better, does this mean from the abx? how many days on abx right now? and if it does get worse before better, is there an indication of about how far into it that would happen if that be the case?

[Fixit]

Fixit,

sorry, could I understand better?

 

you started clarith for mycoplasma? tht was found in your son recently? how long on that right now? how long is it supposed to be, an month?

 

why did you do a steroid burst? is the screech a new type vocal? as per docs,called all the 2 nueros also and said no problem/new

 

when did the vocal screech come on? before, during, or after the steroid? 2 days into burst but wasn't sure at the time(once an hour then)..i am 2 days post burst(about every 5-10 minutes now)

 

 

re the worsening before better, does this mean from the abx? how many days on abx right now? and if it does get worse before better, is there an indication of about how far into it that would happen if that be the case?

I started abx 1 day before burst...8th day on abx....that's what i'm looking for...how far in before it lets up.

his tics are down about 10% and he has not snapped at me at all today and very pleasant.....it's this frelkjonoi, screechy thing!!! i feel like it overrides my gain in mood and movements!!!!

[faith]

Fixit,

how are things today?

the part about him not snapping and being nice? is that something that you never see? could you attribute that to a success? I mean, my kid has good days and bad days, I'm not sure I could successfully use that as the gauger, its mostly the vocal tics and ocd that I would look at, I'm not sure the other issues would resolve so quickly as some of them are kind of 'learned' behaviors, they sort of become part of who he is, I doubt that would change so fast. but the tics or ocd, that comes from urge or feeling, so if that resolved or got better, I would know it right away, and so would he. If he was nice to me tonight, it wouldn't mean anything, because he can be an angel and then he can be the devil, depends on what the situation is. ... also, if it were a worsening before better, I would think all the symptoms would be worse,not just one, or rather, I wouldn't think one thing would get better and not the others, just my feeling.

 

we are on around day 12 of augmentin and I admit I am just giving some extra now, I just want to see what happens and then I might have to move on to something else. so far tho, I am not seeing resolve of tics.

 

Faith

[Fixit]

.vocal screechy thing were almost gone last couple days..though 2 the other times he had a kkk, throat clear it lasted about a week and so did the second time it showed up......however, this jumped way up after school. And as we speak 9:27 pm it sounds like someone is stepping on a puppies tail in the other room!!!!!!!! Could it be because his filling fell out monday night, and yesterday afternoon we got it refilled,,he had gas and novicane...HIs jaw rrreeally hurt him last night... He seemed fine this moring....teacher emailed back and said she didn't hear anything...but he was really talkative... i'think he may be doing that not to tic , becasue it doesn't happen while he's talking.....could it be from that!?!?!?!?! today is his 8th dose of 500mg L-carnitine(never used it before)...should i stop giving that as i heard you only use it for awhile....

 

or could this be part of the sawtooth thing... yesterday things seemed like maybe, could be, not sure, just hopefully, things were better....if at the start things were a 10, ramped to an 11 and yesterday i could maybe give an 8(but i am not sure about anything and doubt myself completely!!)

 

I would love the feed back!!!

[thereishope]

If you see an increase in symptoms, it could be in part to the filling coming out and the dental work. People have cited increase in symptoms after going to the dentist. Do you give him Ibuprofen? If not, maybe do that for a few days.

[lyme_mom]

.vocal screechy thing were almost gone last couple days..though 2 the other times he had a kkk, throat clear it lasted about a week and so did the second time it showed up......however, this jumped way up after school. And as we speak 9:27 pm it sounds like someone is stepping on a puppies tail in the other room!!!!!!!! Could it be because his filling fell out monday night, and yesterday afternoon we got it refilled,,he had gas and novicane...HIs jaw rrreeally hurt him last night... He seemed fine this moring....teacher emailed back and said she didn't hear anything...but he was really talkative... i'think he may be doing that not to tic , becasue it doesn't happen while he's talking.....could it be from that!?!?!?!?! today is his 8th dose of 500mg L-carnitine(never used it before)...should i stop giving that as i heard you only use it for awhile....

 

or could this be part of the sawtooth thing... yesterday things seemed like maybe, could be, not sure, just hopefully, things were better....if at the start things were a 10, ramped to an 11 and yesterday i could maybe give an 8(but i am not sure about anything and doubt myself completely!!)

 

I would love the feed back!!!

Hopefully the filling did not contain mercury b/c mercury can make it easier for lyme (if there is lyme) to hide in the body and evade antibiotics. Many lyme literate doctors detox heavy metals when they are treating lyme b/c of this. Of course mercury can cause horrible symptoms in and of itself and that is why DAN! doctors also detox heavy metals. Any silver filling has mercury in it. The white ones shouldn't have mercury. Root canals are also notorious for causing illness in the body b/c they provide a good hiding place for bacteria in the miles of canals in the tooth. Also, when you have teeth pulled it often leaves a cavitation in the gum that you cannot see but which also provides a place for bacteria to grow. If you go to a biological dentist you can have all of these issues dealt with in a way that minimizes exposure to these toxins.

[Fixit]

Hopefully the filling did not contain mercury b/c mercury can make it easier for lyme (if there is lyme) to hide in the body and evade antibiotics. Many lyme literate doctors detox heavy metals when they are treating lyme b/c of this. Of course mercury can cause horrible symptoms in and of itself and that is why DAN! doctors also detox heavy metals. Any silver filling has mercury in it. The white ones shouldn't have mercury. Root canals are also notorious for causing illness in the body b/c they provide a good hiding place for bacteria in the miles of canals in the tooth. Also, when you have teeth pulled it often leaves a cavitation in the gum that you cannot see but which also provides a place for bacteria to grow. If you go to a biological dentist you can have all of these issues dealt with in a way that minimizes exposure to these toxins.

 

The filling that came out was metal...the hole was yucky!!! AS i spoke to the doc..she said it was one she was watching since last year...that would be just prior to this onset!!!! So...what do i do????? Detox, wait it out.... how long will it take? I am such an idiot, serioiusly, how many ways can i screw my kid up......when he got the filling we lived in pa,,,,my son and i have very deep molars and our k-9's are very pronounced too.....there was no floride in the water there,.anyway, i told the doc 4-5years ago i wanted the white filling...he convinced me not to worry because that tooth would fall out anyway..

 

What is wrong with me!!!!!...I am bawling over here...

I let the doc give him shots 1-2 days after a feaver

the first couple of times he had strep i didn't treat it for a couple of weeks because i didn't know what is was..i never had strep

i let them put in that stupid filling..... i knew better... i should have held my ground!!!

 

It was pretty bad last night.....he had 1 or 2 squeeks this moring...i guess i'll need to see if they call me to get him from school.

 

if it's the tooth thing how long till it settles

 

ps checked the labcorp test is was a western blot igg, igm ab ab, quant igm all neg

[thereishope]

The reason some have seen setbacks or exacerbations following dental work is that bacteria can get into the bloodstream, in damaged tissue, etc. I was referring to the hole being opened and exposed and bacteria getting in. Now that you said it has been possibly loose or cracked since his exacerbation, perhaps that's how the bacteria was getting in. Maybe you'll see improvement now that it is fixed. But keep in mind it may not be overnight improvement, but a slow improvement.

[Fixit]

The reason some have seen setbacks or exacerbations following dental work is that bacteria can get into the bloodstream, in damaged tissue, etc. I was referring to the hole being opened and exposed and bacteria getting in. Now that you said it has been possibly loose or cracked since his exacerbation, perhaps that's how the bacteria was getting in. Maybe you'll see improvement now that it is fixed. But keep in mind it may not be overnight improvement, but a slow improvement.

 

THANK YOU VICKIE