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What is the protocol for high dose Azithromyacin?


lboll

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My son has just been started on a high dosage of Augmentin. Our doctor here in China is very open to trying this as we had researched the subject and he believes that this could, indeed, be PANDAS.

 

I had mentioned that our son has exhibited symptoms since he was young and now he is 10. According to the information I've read on here, there is a good chance that the strep would be intracellular and the best choice would be Azithromycin.

 

The doctor took my recommended dosage for Augmentin (again, based on information from this forum) however, was a bit wary of prescribing the Zith. He said he would just need the proper dosage as "high dosage" doesn't give him enough information. He worries that Azith doesn't leave the body as quickly as Augmentin, so he wouldn't want to give too much.

 

Can anyone tell me what is considered to be a "high dosage" of the Azithromycin?

 

I would really appreciate it.

 

 

lboll

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Dr. L told me (I don't know how much your child weighs) that 500mg/day of zith would be safe for my daughter- she weighs 100lbs. Her regular pediatrician prescribed 500mg for 3 days straight as a loading dose, then switched to every other day at 500mg. That is working for us right now.

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My 90 lb dd is on 500mg per day split between a.m. and p.m. dosings. She is also on augmentin xr for now at 2000mg per day.

Angela

 

I too am interested in this. How many folks are talking it daily vs every other day vs vs 5 days on 5 days off, etc?
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My 90 lb dd is on 500mg per day split between a.m. and p.m. dosings. She is also on augmentin xr for now at 2000mg per day.

Angela

 

I too am interested in this. How many folks are talking it daily vs every other day vs vs 5 days on 5 days off, etc?

 

Wow...I've not heard of taking both at the same time. Are you seeing any significant results?

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Our 58 pounder (started at this dose at 44 pounds) has been on 250mg/day azith since June 08. Her immunologist felt this dose would be safe for years. If your child weighs more than this, I would consider 500mg/day, at least for the first month or 2.

 

Btw, CZL is in China too. You should private msg him. I'm sure he'd love to hear from you.

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Our 58 pounder (started at this dose at 44 pounds) has been on 250mg/day azith since June 08. Her immunologist felt this dose would be safe for years. If your child weighs more than this, I would consider 500mg/day, at least for the first month or 2.

 

Btw, CZL is in China too. You should private msg him. I'm sure he'd love to hear from you.

 

Thank you all of you! My son is about 60 pounds. I will bring this information to my doctor. Can anyone tell me why you would want to try the combination of the 2? I saw that someone is doing this. Does the Augmentin fight one type while the Azith fights the other?Sorry, so new to this all.

 

CZL and I have already been emailing. Sounds like he/she is running up against finding a doctor who will try, but I have found one willing and able. Phew.

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Our 58 pounder (started at this dose at 44 pounds) has been on 250mg/day azith since June 08. Her immunologist felt this dose would be safe for years. If your child weighs more than this, I would consider 500mg/day, at least for the first month or 2.

 

Btw, CZL is in China too. You should private msg him. I'm sure he'd love to hear from you.

 

Thank you all of you! My son is about 60 pounds. I will bring this information to my doctor. Can anyone tell me why you would want to try the combination of the 2? I saw that someone is doing this. Does the Augmentin fight one type while the Azith fights the other?Sorry, so new to this all.

 

CZL and I have already been emailing. Sounds like he/she is running up against finding a doctor who will try, but I have found one willing and able. Phew.

On using both- my understanding only:

If you have intracellular strep (or think you might)- zith is able to penetrate into the cells to get at the strep there, but the way it works is just to slow down the strep so it can't reproduce (doesn't really kill it). Augmentin at high enough doses is bacteriacidal, but only gets extracellular strep. So get the bacteria out of the cells w/ zith and then kill them w/ augmentin.

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My 90 lb dd is on 500mg per day split between a.m. and p.m. dosings. She is also on augmentin xr for now at 2000mg per day.

Angela

 

I too am interested in this. How many folks are talking it daily vs every other day vs vs 5 days on 5 days off, etc?

 

Wow...I've not heard of taking both at the same time. Are you seeing any significant results?

 

 

My dd is taking them under the direction of Dr. T. She is improving slowly, but surely. The difference between today and two months ago is astounding, yet she still has a ways to go. It is definitely a sawtoothed recovery. Each time her immune system is stressed she backslides for a few days, though never as bad as she was this fall. Advil is still helping a LOT, as I found out when she did a steroid burst and I stopped the Advil.

 

Got to run. anything else you want to know, just ask.

Angela

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My 90 lb dd is on 500mg per day split between a.m. and p.m. dosings. She is also on augmentin xr for now at 2000mg per day.

Angela

 

I too am interested in this. How many folks are talking it daily vs every other day vs vs 5 days on 5 days off, etc?

 

Wow...I've not heard of taking both at the same time. Are you seeing any significant results?

 

 

My dd is taking them under the direction of Dr. T. She is improving slowly, but surely. The difference between today and two months ago is astounding, yet she still has a ways to go. It is definitely a sawtoothed recovery. Each time her immune system is stressed she backslides for a few days, though never as bad as she was this fall. Advil is still helping a LOT, as I found out when she did a steroid burst and I stopped the Advil.

 

Got to run. anything else you want to know, just ask.

Angela

Since you mentioned the steroid burst, could someone tell me a bit more about that? I saw on Buster's flowchart that it is pretty common. And Advil? Is that for the inflammation? Thanks!

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My 90 lb dd is on 500mg per day split between a.m. and p.m. dosings. She is also on augmentin xr for now at 2000mg per day.

Angela

 

I too am interested in this. How many folks are talking it daily vs every other day vs vs 5 days on 5 days off, etc?

 

Wow...I've not heard of taking both at the same time. Are you seeing any significant results?

 

 

My dd is taking them under the direction of Dr. T. She is improving slowly, but surely. The difference between today and two months ago is astounding, yet she still has a ways to go. It is definitely a sawtoothed recovery. Each time her immune system is stressed she backslides for a few days, though never as bad as she was this fall. Advil is still helping a LOT, as I found out when she did a steroid burst and I stopped the Advil.

 

Got to run. anything else you want to know, just ask.

Angela

 

Is he thinking Lyme might be causing the PANDAS? I think the high doses of multiple antibiotics is typical of a Lyme treatment. Did your dd get an IVIG? How much Advil is she getting and how often. I gave my daughter 400mg of Advil and wham what a difference. I did this twice then the third and fourth time didn't seem to work, so I stopped. Is that just temporary relief... works initially and then stops?

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My 90 lb dd is on 500mg per day split between a.m. and p.m. dosings. She is also on augmentin xr for now at 2000mg per day.

Angela

 

I too am interested in this. How many folks are talking it daily vs every other day vs vs 5 days on 5 days off, etc?

 

Wow...I've not heard of taking both at the same time. Are you seeing any significant results?

 

 

My dd is taking them under the direction of Dr. T. She is improving slowly, but surely. The difference between today and two months ago is astounding, yet she still has a ways to go. It is definitely a sawtoothed recovery. Each time her immune system is stressed she backslides for a few days, though never as bad as she was this fall. Advil is still helping a LOT, as I found out when she did a steroid burst and I stopped the Advil.

 

Got to run. anything else you want to know, just ask.

Angela

 

Is he thinking Lyme might be causing the PANDAS? I think the high doses of multiple antibiotics is typical of a Lyme treatment. Did your dd get an IVIG? How much Advil is she getting and how often. I gave my daughter 400mg of Advil and wham what a difference. I did this twice then the third and fourth time didn't seem to work, so I stopped. Is that just temporary relief... works initially and then stops?

 

 

More often than not I give my dd (90 lbs) 200mg of Advil a.m. and p.m. I occasionally give her an extra if she is struggling. For her, it makes a big difference but I have not stopped giving it to her since I figured out how much it helped, except for the first two days of her steroid burst. (and then because I worried about her stomach) The change is dramatic and it kicks in about a half hour after I give it to her and lasts about 22 hours. I give it twice a day to avoid the difficult time we experienced 22 hours later when giving it only once every 24 hour period.

 

We did a 6 day tapering dose of steroids that were given spread out throughout the day. Day one was the best day, at the higher dose. (24mg that day and of that, 8mg in the a.m. which gave us a noticable change in her symptoms.

 

My dd tested negative for Lyme. When we went to see Dr. T, my dd was already on 2000mg of Augmentin XR. He has had good luck with Zithromax so he wanted her on that drug. There are however, pockets of Zith resistant strep on the east coast and so I THINK (though I'm not positive) he though it was a good idea to do both, just in case, and also since she was tolerating the Augmentin XR well.

 

Late this fall my dd was pretty much non-functional. She could only watch TV and I had to use the remote for her. It took up to 5 hours to get her to brush her teeth, get her pj's on, climb the stairs, get into bed and fall asleep. (she either repeated the whole time or cried because she couldn't do it or raged in agony becasue it was so difficult) She started 20mg Celexa in early Oct. and gained some ground then but still struggled mightily just to get through the day. Ten days into the Celexa she began to do better. We upped it to 40mg and I didn't notice any big changes from that. Nov. 11th she began Augmentin at 1000mg per day. A week later we upped it to 2000mg per day of the XR after reading Saving Sammy.

 

Things began to improve slowly but then a setback after a yeast infection scared me and I decided to get an expert on board so we made an apt. with Dr. T and drove to NJ in MId December. He added 500mg of Zith to her regiment, which also includes Probioics, vitamin D2, vitamin B3, Omega 3's, and DHA, as well as Advil and still the Celexa which I'm afraid to change at this point.

 

She has continued to improve slowly. She has had two setbacks; the first the yeast infection I mentioned and the second a cold which also coincided with her period. She still has some days that are not as good as others, like today where she struggled to walk more and had to repeat more steps and just felt more frustrated overall. But when I compare today to any day this fall before antibiotics, she is MUCH MUCH MUCH better.

 

Today she had some trouble walking and asking reassurance questions. She had a facial tic some. Her vocal one has mostly been gone..though when I hear that sound I always wonder if it is back or just her making a tsk sound like I do when I'm frustrated. So far it hasn't repeated so I think its mostly gone. She did however, shower of her own accord, dress in under 5 minutes (though she repeated some), played on her pc, played wii, watched tv and used the remote, stayed home with her dad (she used to cry if i left), went to let the neighbor's dog out and went into the house herself alone and got the dog from its crate. She did say she hated her stupid self once but that used to be a nightly occurance said while raging and crying and it was said over and over while she asked me continually to just kill her. Today she said it once, then let it pass and moved on. no tears. no raging.

 

oh, and she has not had ivig nor do I know if she could get it. She tested normal on her aso titers, lyme, and the tests she had done to see if her immune system was working correctly. She is a child who was never sick much.

 

More than you wanted to know?

 

Angela

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The advil is for inflammation. Dr. T told me that Advil and Prednisone (the steroid) work in different ways. Both are good for inflammation.

 

Angela

 

Thank you! So how do we find out if there is inflammation? Or do we just assume that there is? I appreciate any and all advice. Sorry if my questions seem a bit stupid. :lol:

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