Antibiotics- how much is too much

[sptcmom]

Hi

I am extremely nervous. DS was diagnosed with Bartonella recently. DS also has PANDAS. DS has been prescribed augmentin 600 ES twice a day (for pandas), Bactrim 240 twice a day and Biaxin 250 twice a day a grand total of 2200 mgs of abx daily for an 8 year old weighing 52 pounds.

Does this sound ok to you guys?

Thanks

Jodie

[P_Mom]

I understand your concern...I'd be a wreck about it....I hate giving my sons 250 mg of Augmentin a day!

[PacificMama]

Jodie,

 

Do you just have one doctor who is doing the prescribing for all three abx? (Just trying to clarify because your post sounds like one doctor has diagnosed pandas and prescribed augmentin, and then there are the bart meds from another?).

[sptcmom]

Jodie,

 

Do you just have one doctor who is doing the prescribing for all three abx? (Just trying to clarify because your post sounds like one doctor has diagnosed pandas and prescribed augmentin, and then there are the bart meds from another?).

Well heres the whole story

We are 16 weeks post IVIG with Dr K. His prophylacic dosage of 250 augmntin/day did really nothing for ds8.5. We upped it to augmentin 600ES twice a day after a couple strep exposures this sumer. We stayed with that. DS started to plateau off and we decided to switch to Biaxin to keep the abx rotating for efficiency.

Now we went to CT to see Dr J after Igenex came back negative and we still had leg issues. We also saw Dr B. same day later in the day.

Dr B decided to stay with rotating aug and Biaxin.

Aug dose ended and I switched to Biaxin and ds was doing good for 1st five days on it.

Dr J's addl bloodwork came back positive for Bartonella. He added Zithromax 100 mg twice a day and Bactrim 240 mg twice a day to the Biaxin 250 twice a day we were already doing.

Two days into this regimen ds started herxing really bad. I called Dr J and spoke with him. He said to stop Zithromax and switch to Augmentin 600 bid since Biaxin and zith together as macrolides can make the zith cause side effects.

I double confirmed he wanted ALL those abx in ds and Dr J said yes if he can tolerate it. So now we're doing aug 1200 total + biaxin 500 total + bactrim 480 total = 2200 mgs of abx/day.

Other factors

ds had a loose tooth and lost it on tuesday. Zith and Bactrim were both liquid initially when ds had the bad herxing and they both contain red40 dye.

Dr J says real herxing involves a lot of fatigue which ds didnot have. Dr J says herxing without exhaustion is side effects not true herxing.Atleast thats what I understood. I was driving when he called.

Poor ds is still full of crazy motor tics all day and it all started with adding the lyme meds a week ago.

So now I don't know what the HECK is going on or what is right or wrong anymore.

Did I stop the Zith too soon? Maybe it was the red dye he was reacting to.

Has anyone done zith and biaxin two macrolides together?

Should I call Dr B for a 2nd opinion on meds? I know he will ask me to lower the dosage.

PLEASE- any advise?

Edited September 9, 2010 by sptcmom

[lyme_mom]

Jodie,

 

Do you just have one doctor who is doing the prescribing for all three abx? (Just trying to clarify because your post sounds like one doctor has diagnosed pandas and prescribed augmentin, and then there are the bart meds from another?).

Well heres the whole story

We are 16 weeks post IVIG with Dr K. His prophylacic dosage of 250 augmntin/day did really nothing for ds8.5. We upped it to augmentin 600ES twice a day after a couple strep exposures this sumer. We stayed with that. DS started to plateau off and we decided to switch to Biaxin to keep the abx rotating for efficiency.

Now we went to CT to see Dr J after Igenex came back negative and we still had leg issues. We also saw Dr B. same day later in the day.

Dr B decided to stay with rotating aug and Biaxin.

Aug dose ended and I switched to Biaxin and ds was doing good for 1st five days on it.

Dr J's addl bloodwork came back positive for Bartonella. He added Zithromax 100 mg twice a day and Bactrim 240 mg twice a day to the Biaxin 250 twice a day we were already doing.

Two days into this regimen ds started herxing really bad. I called Dr J and spoke with him. He said to stop Zithromax and switch to Augmentin 600 bid since Biaxin and zith together as macrolides can make the zith cause side effects.

I double confirmed he wanted ALL those abx in ds and Dr J said yes if he can tolerate it. So now we're doing aug 1200 total + biaxin 500 total + bactrim 480 total = 2200 mgs of abx/day.

Other factors

ds had a loose tooth and lost it on tuesday. Zith and Bactrim were both liquid initially when ds had the bad herxing and they both contain red40 dye.

Dr J says real herxing involves a lot of fatigue which ds didnot have. Dr J says herxing without exhaustion is side effects not true herxing.Atleast thats what I understood. I was driving when he called.

Poor ds is still full of crazy motor tics all day and it all started with adding the lyme meds a week ago.

So now I don't know what the HECK is going on or what is right or wrong anymore.

Did I stop the Zith too soon? Maybe it was the red dye he was reacting to.

Has anyone done zith and biaxin two macrolides together?

Should I call Dr B for a 2nd opinion on meds? I know he will ask me to lower the dosage.

PLEASE- any advise?

I have never heard Dr. J say that true herxing is accompanied by fatigue. Also it is difficult to know with a child what the symptoms really are b/c they do not always know to tell you. Is it possible you misunderstood him? We had herxes that were not accompanied by fatigue in our family.

[PacificMama]

Hi Jodie,

 

OK, that's good that Dr. J knows all of the meds your son is taking... just wanted to confirm that.

 

I agree with lyme mom in that I don't have any recollection of the fatigue "test", in differentiating between herx and reaction. I would say my daughter had some fatigue during herxes, but never so much that it was greatly noticeable. I could just tell that she needed a bit more sleep on those days, and we kept our schedule as stress free as possible. (But we did try and keep up with some physical activity too... it's important to keep things circulating). Herxes are tough, and we gave lots of extra TLC during this time, and let a lot of things go too.

 

The symptoms sound like a herx, in that you are saying it's an exacerbation of symptoms, with some possible new similar symptoms? Also, mood liability and anxiety during a herx is very common. It seems to me that a reaction would be quite different. However, I absolutely am not able to make any sort of judgement about this for you -- which is why it is imperative that you keep in the loop with Dr. Jones.

 

Here is how I always handled my contact with the office when I had questions. I would compose a fax, memo style (to, from, phone contact, date, subject). I would keep it as short, clear and simple as possible. First summarizing things (such as diagnosis, when treatment began, etc). Then list current meds. Then clearly list out your question, and what you are trying to have answered. They will put this in front of Dr. Jones and it makes it easy for him to answer -- and nothing is misinterpreted. They will then call you back. This also leaves me with a record of contact and issues that have come up. I can always look back over my fax copies to see what's come up in the past.

 

Regarding red dye, has this been an issue in the past in that you've seen an obvious, immediate effect?

 

I would first clarify with Dr. Jones what he wants you to do, via fax where you list all the meds and situation, etc. He really has a great deal of experience with this, so I do trust his judgement. For our own situation, he has always been correct when telling us to start or stop something (and there were definitely times where I went on faith in following his instructions as I was scared too. but it always worked out). However, you are the mom... trust your intuition. If after Dr. Jones comments, maybe you still feel the need to consult Dr. B. Maybe the two docs could consult too.

 

keep us posted.

[cobbiemommy]

I would say that if Dr. J knows about all the medications, that you should stick with it. This is a marathon, not a sprint towards healing and health. That said, we are going through our own issues of doubting medications, but on the flip side. We want our son to be on a stronger med, but we are trying to trust in the doctors. Good luck.

Cobbie

[KeithandElizabeth]

Jodie:

 

I just want to let you know that all of our son's herxing was very mental (PANDASish) for him. My daughter did have herxing that was more physical.

 

As they say in the lyme world, lyme can mimic at least 300 diseases and therefore, the herxes can also mimic the full array of symptoms.

 

I think Pacificmama's idea of corresponding via fax is a great idea!

 

Elizabeth

[justinekno]

Elizabeth,

So glad you said this. We are having some serious mental issues (eye tic is much worse, moody and less focused at school). We made such progress these past 3 weeks on the new Lyme protocal and then we had the fever and exhaustion and now BAM - regression.

 

Justine

 

Jodie:

 

I just want to let you know that all of our son's herxing was very mental (PANDASish) for him. My daughter did have herxing that was more physical.

 

As they say in the lyme world, lyme can mimic at least 300 diseases and therefore, the herxes can also mimic the full array of symptoms.

 

I think Pacificmama's idea of corresponding via fax is a great idea!

 

Elizabeth

[philamom]

Elizabeth,

So glad you said this. We are having some serious mental issues (eye tic is much worse, moody and less focused at school). We made such progress these past 3 weeks on the new Lyme protocal and then we had the fever and exhaustion and now BAM - regression.

 

Justine

 

Jodie:

 

I just want to let you know that all of our son's herxing was very mental (PANDASish) for him. My daughter did have herxing that was more physical.

 

As they say in the lyme world, lyme can mimic at least 300 diseases and therefore, the herxes can also mimic the full array of symptoms.

 

I think Pacificmama's idea of corresponding via fax is a great idea!

 

Elizabeth

Justine- I'm so sorry this is happening--what does the lyme doctor suggest for when a fever/illness happens and the child backslides? Or do you think this is herxing? Melinda

[justinekno]

We actually don't see a LLMD until next month so we're just being guided by our PANDAS dr and Integrative dr for now. Neither really had suggestions so I guess we will just grin and bear it until our appt. I'd like to think it's herxing but I'm not sure. It's somewhat frustrating because we really saw a whole new child over the past three weeks and it was exciting to see. He's had Lyme since he was born and so we were seeing things we had never seen - in a positive way.

 

 

Elizabeth,

So glad you said this. We are having some serious mental issues (eye tic is much worse, moody and less focused at school). We made such progress these past 3 weeks on the new Lyme protocal and then we had the fever and exhaustion and now BAM - regression.

 

Justine

 

 

Justine- I'm so sorry this is happening--what does the lyme doctor suggest for when a fever/illness happens and the child backslides? Or do you think this is herxing? Melinda

[philamom]

We actually don't see a LLMD until next month so we're just being guided by our PANDAS dr and Integrative dr for now. Neither really had suggestions so I guess we will just grin and bear it until our appt. I'd like to think it's herxing but I'm not sure. It's somewhat frustrating because we really saw a whole new child over the past three weeks and it was exciting to see. He's had Lyme since he was born and so we were seeing things we had never seen - in a positive way.

 

 

Elizabeth,

So glad you said this. We are having some serious mental issues (eye tic is much worse, moody and less focused at school). We made such progress these past 3 weeks on the new Lyme protocal and then we had the fever and exhaustion and now BAM - regression.

 

Justine

 

 

Justine- I'm so sorry this is happening--what does the lyme doctor suggest for when a fever/illness happens and the child backslides? Or do you think this is herxing? Melinda

So sorry Justine! Hopefully, it's short-lived and the real him is back soon!

[KeithandElizabeth]

Justine:

 

You really can see it "all" with herxing. We saw TICs, anxiety, hyperactivity, mood lability, nightmares, etc.....

 

Our experience was that when we initially started the lyme treatment (post many IVIG's) our son regressed and as time went by, he would do better and better, and yet, still have regressions the whole time. The regressions just became less intense over time. Now, 6 months into lyme treatment, the regressions will last an hour versus days.

 

If things became unbearable, we would hold off on the antibiotics for one dosing and pour in all the detoxes. This really seemed to help and get him back on track the next day. Every family is different though and one good friend, who sees Dr. J, had to go off antibiotics for 2 full days at several points in time to make sure what she was seeing was a herx.

 

So, just remember that the herxing can be intense and just keep in contact with your LLMD (once you see him).

 

Elizabeth

[sf_mom]

Justine,

 

The growth cycle for the Lyme bacteria is approximately 4 weeks so its not surprising you are seeing an uptick in symptoms (Herxing) at this time.

 

The following is taken from BURRASCANO's guidelines:

 

Another very important factor is response to treatment- presence or absence of Jarisch Herxheimer-like reactions, the classic four-week

cycle of waxing and waning of symptoms, and improvement with therapy.

 

http://www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf

 

Hang in there... I feel like a pro at 'herxing cycles' by now and you are fortune because sometimes co-infections can throw it off from being recognizable. I took my daughter off antibiotics at the end of June because I was worried due to uptick in symptoms. She got much much sicker within days and one of the reasons they believe she has Bartonella as a co-infection. I put her immediately back on antibiotics and it took about a week but things eventually evened out for her and she was fine for another 3 weeks after and then things picked up again (not as bad).

 

Mark the beginning in uptick, decline and see if you can't figure out the cycle for when you see your new LLMD Dr. For now, focus on detox.

 

-Wendy

Edited September 10, 2010 by SF Mom

[sf_mom]

Jodie,

 

I think you are in good hands with Dr. J. Its really tough to watch things get worse but there is hope on the other side of the HERX. DS is almost back to baseline prior to the new antibiotic and its been almost 30 days and remember my son's germ load is way down due to all his treatments. I really pray in the next 30 days we will achieve baseline again but who knows! This is a long process of recovery...

 

-Wendy