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Back to flairing up... :(


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So, it has been a week since my daughter really started jerking again...Talked to her dr yesterday and they said to stop all meds; they think its a flair up...Why do we stop meds at a time like this?? I thought it was better to keep the meds going to fight the infections..Guess Not...And, I was wondering, does anyone have their children on SSI??

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When we started Lyme protocol our son's TICS flair'd dramatically and we continued with treatment and things eventually settled out. It took nine weeks for the TICS to resolve. Our Dr. took his response as a good indication the antibiotics were working. I think he is looking to force similar herx's as treatment progresses and his progress slows by rotating antibiotics.

 

I forget who your LLMD is currently??

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When we started Lyme protocol our son's TICS flair'd dramatically and we continued with treatment and things eventually settled out. It took nine weeks for the TICS to resolve. Our Dr. took his response as a good indication the antibiotics were working. I think he is looking to force similar herx's as treatment progresses and his progress slows by rotating antibiotics.

 

I forget who your LLMD is currently??

 

 

Her dr is Dr J in CT

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Are you saying this is an extreme herx, or just a regular cyclical flare of symptoms? Normally you would stay on meds through a symptom flare. Is stopping for a set number of days? Dr. J would never have had us stop any abx unless the herx symptoms were not tolerable for my daughter. Hard to say as I don't know how bad it is for your daughter, or the impression Dr. J's office has of the situation.

Hope she feels better soon.

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Are you saying this is an extreme herx, or just a regular cyclical flare of symptoms? Normally you would stay on meds through a symptom flare. Is stopping for a set number of days? Dr. J would never have had us stop any abx unless the herx symptoms were not tolerable for my daughter. Hard to say as I don't know how bad it is for your daughter, or the impression Dr. J's office has of the situation.

Hope she feels better soon.

 

 

It is pretty bad and she has been off of medication for a week now and it hasnt helped at all. I am supposed to call them back tomorrow but i am thinking i will call them back today and see what I am supposed to do. I dont know exactly what this is, i just know she is having the jerking episodes like crazy.

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I am so sorry you are going through this right now. One thing our Dr. mentioned to me 'when a child goes off antibiotics' sometimes they watch to see how quickly they relapse. If they relapse or get worse rather rapidly often Bartonella is suspected as a co-infection. Bartonella has a short growth cycle of one to two weeks and therefore would see a rise in symptoms that quickly.

 

We did this with our daughter accidentally prior to Lyme diagnoses. At the time, she was on Azithromycin only and we noticed rise in symptoms over two weeks and I was thinking it was a yeast problem due to antibiotics so I suspended treatment. Within days she was physically ill and much worse. We then but her back on antibiotics out of fear and it took another 3 weeks for her to recover. Looking back, we were probably witnessing a herx at the time but did not realize it because we were not aware of Lyme.

 

With our older son we have a third antibiotic on hand to pulse when we see a rise in symptoms. Oftentimes, Bartonella is treated by pulsing antibiotics.

 

I would give Dr. Jones a call to discuss symptoms and see if there is a rotation of antibiotics that might help.

 

-Wendy

Edited by SF Mom
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I am so sorry you are going through this right now. One thing our Dr. mentioned to me 'when a child goes off antibiotics' sometimes they watch to see how quickly they relapse. If they relapse or get worse rather rapidly often Bartonella is suspected as a co-infection. Bartonella has a short growth cycle of one to two weeks and therefore would see a rise in symptoms that quickly.

 

We did this with our daughter accidentally prior to Lyme diagnoses. At the time, she was on Azithromycin only and we noticed rise in symptoms over two weeks and I was thinking it was a yeast problem due to antibiotics so I suspended treatment. Within days she was physically ill and much worse. We then but her back on antibiotics out of fear and it took another 3 weeks for her to recover. Looking back, we were probably witnessing a herx at the time but did not realize it because we were not aware of Lyme.

 

With our older son we have a third antibiotic on hand to pulse when we see a rise in symptoms. Oftentimes, Bartonella is treated by pulsing antibiotics.

 

I would give Dr. Jones a call to discuss symptoms and see if there is a rotation of antibiotics that might help.

 

-Wendy

 

Yep, he took her off the meds last week and i called them back yesterday and they just called me back and told me to start zith back for 4 days and then add the other two back. So, that is a total of three now. I just hope it works. He also said she needed to have another IVIG treatment, but right now I just want to get her back to not jerking as much.

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Mandy- I would call today!! Is she having seizures? I feel so bad for your daughter!!!

 

They are kind of like seizures but she is consious and she can talk...slurred talk, but talk. She has done this since December of last year. They change in frequency and severity, so we never know when and how bad its gonna be. It's for sure a crazy thing to deal with.

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  • 4 weeks later...

I sure hope you see rapid improvement..... AND GLAD YOU CALLED and they are restarting her on antibiotics.

 

-Wendy

 

 

Sorry I havent been on in a while...Things have been hectic with work and kids haha...She is doing much much better now. Hardly any jerking at all. She still has the chest spasms but its only like once a day. We have another appt in CT on Feb 15th...wonder if we will get snowed in??

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I sure hope you see rapid improvement..... AND GLAD YOU CALLED and they are restarting her on antibiotics.

 

-Wendy

 

 

Sorry I havent been on in a while...Things have been hectic with work and kids haha...She is doing much much better now. Hardly any jerking at all. She still has the chest spasms but its only like once a day. We have another appt in CT on Feb 15th...wonder if we will get snowed in??

Great to hear!!

Don't get me started on the snow...they're calling for more, again next week in Philly. We have our follow-up in two weeks.

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I sure hope you see rapid improvement..... AND GLAD YOU CALLED and they are restarting her on antibiotics.

 

-Wendy

 

 

Sorry I havent been on in a while...Things have been hectic with work and kids haha...She is doing much much better now. Hardly any jerking at all. She still has the chest spasms but its only like once a day. We have another appt in CT on Feb 15th...wonder if we will get snowed in??

Great to hear!!

Don't get me started on the snow...they're calling for more, again next week in Philly. We have our follow-up in two weeks.

 

I know...kinda makes me want to wait to get my plane tickets till closer to time, because if its a blizzard we may have to reschedule...Us Oklahoma folks are used to 60 and 70 degree weather here lol

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So fantastic to hear your news!!!!!! Did they ever suspect babesia or treat for babesia? Cheers to full recovery in 2011.

 

Well she is on 3 abx now so whatever they did its working. I am sure he has treated her for it because she had some purple stretch mark things and he changed her meds up.

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