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Azithromycin Risk of Cardiovascular Death


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Chemar- the message was very much appreciated - thank you. I'm always looking out for side effects, adverse reactions, studies/reasearch, on the medicine and/or supplements I give my family.

 

I think it's the remarks of the doctor fueling the fire - not the messenger. ;)

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Philamom - you know I share your frustration with docs. Have written lots of imaginary scathing letters in my head to them. But the 2 Pandas docs who treated my son didn't see his lyme symptoms (swollen knee, asymmetrical swollen glands) and one said he didn't have it despite the Igenex results that convinced our LLMD that he did have it. So all docs can miss stuff and like it or not, the burden remains on our shoulders. And will even when Pandas/Pans becomes more mainstream. Few will ever have the ability to connect the dots the way we do.

 

And EAMom, I absolutely believe rapid diagnosis and treatment is critical. But my DS was on abx for plenty of infections as a toddler -sometimes even for 21 day courses - and he still developed Pandas. Unless someone had detected his zinc/B6 deficiency as a toddler, unless we'd started looking at my daughter's methylation problems in preschool, I think both kids were going to end up with PANS regardless, because the cracks in the foundation were there, waiting to be cracked open. I don't think this is necessarily true for everyone, but I don't think abx alone would've prevented my kids' issues. No way to know for sure, but that's what my heart tells me.

 

As for the article itself, I think it's a reminder that all the treatments we have at our disposal carry risks and it's important to not get complacent. My son took tindamax for a time and I lost a lot of sleep over its potential as a carcinogen. Doxycycline carries risks for developing teeth and sun exposure. IVIg carries risks as does pheresis. Doesn't mean I haven't taken those risks, but it's important to do so knowing what those risks are.

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I am confused as to why this is not posted under the Lyme forum? Zith is generally used at much higher doses for treating Lyme.

 

Nothing new http://www.qtdrugs.org/ Even Pepcid and Benedryl have this risk. It is a commonly recognized risk that has been around a long time and is associated with MANY meds.....I think it may just be new to zith. I wouldn't stop the med or get overly concerned. If you want to be sure everything is okay....ask for a simple EKG.

Edited by P.Mom
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I am confused as to why this is not posted under the Lyme forum??? Zith is generally used at much higher doses for treating Lyme.

 

 

Our daughter is currently being treated with azithromycin. She has been on a prophylactic dose every M/W/F during the school year for the last couple of years. We noticed a return of mild symptoms this spring and had titers run again. Her mycoplasma titer should be between 0 and 99. It was 727. Therefore, she is being treated for a chronic mycoplasma infection which requires, in her case, azithromycin daily for 60 days. Azithromycin can be a drug used for our PANDAS kids. There are quite a few PANDAS kids in our support group who are on a prophylactic dose of azith. I'm hoping that it does not become hard to get due to this study.

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I am confused as to why this is not posted under the Lyme forum??? Zith is generally used at much higher doses for treating Lyme.

 

 

Our daughter is currently being treated with azithromycin. She has been on a prophylactic dose every M/W/F during the school year for the last couple of years. We noticed a return of mild symptoms this spring and had titers run again. Her mycoplasma titer should be between 0 and 99. It was 727. Therefore, she is being treated for a chronic mycoplasma infection which requires, in her case, azithromycin daily for 60 days. Azithromycin can be a drug used for our PANDAS kids. There are quite a few PANDAS kids in our support group who are on a prophylactic dose of azith. I'm hoping that it does not become hard to get due to this study.

 

Oh, I am well aware of the zith usage among PANDAS kids. And, I wouldn't personally discontinue it if my child were on it and it was working. I also know many on Zith....I am not sure what you got out of my post?? I also do not wish for abx to be any harder to get for our kids. I don't think this is anything new, though. This risk is common. I just stated that I didn't know why it wasn't put under the Lyme thread too?

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I am confused as to why this is not posted under the Lyme forum? Zith is generally used at much higher doses for treating Lyme.

 

 

 

You are welcome to add it there yourself. I only knew of PANDAS parents using azith so considered it relevant here.

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Do any of you remember when my dd12 had those crazy high liver enzymes 3 weeks after starting Bactrim last year? Like levels in the 700's when they should be in the 20's?? Well, gratefully, Dr. B ran those liver tests because she didn't really show any symptoms of liver distress, just some headaches which could be lots of things. Her reaction to Bactrim was unusual but now we know to stay away from it. I posted about it knowing many here had tremendous success, but they might want to get the liver checked.

 

I don't think with 1 in 5 Americans filling a script for Zith last year that docs will order an EKG for everyone, but for our kids that are on Zith long term prophylactics or treatment, an EKG might give peace of mind or alert parents to silent heart issues they didn't know existed and therefore, may not be the ideal choice for their specific child. I know EKGs are required before some psych med prescriptions are issued and it is an easy, painless procedure.

 

Zith is also known for stressing the liver. Even though the Bactrim really bothered her liver, Zith has caused her liver no distress, so it seems to be very individualized reactions. Also if you are dosing ibuprofen regularly, by itself or in combination with the abx, periodic liver testing is important.

 

Weighing risk is a burden we all take very seriously as we each try and do what is best for our children until they are capable of making these decisions on their own. My dd12 is also positive for one copy of the Factor V Leiden gene mutation which says she is at increased risk for vascular thrombosis and shouldn't take birth control pills. I'm not positive about this, but I bet doctors write scripts for BCPs every minute of everyday and don't run the test for the Factor V gene mutation (But now I know and will have to deal with that when the time comes....hopefully later than sooner for my sanity!!!) It just hasn't made front page news because the medical establishment has approved widespread birth control but is on a campaign to discourage antibiotic use. I'm not implying this finding is convenient, just the promotion of it.

 

I would respectfully submit that this is at the root of the less than enthusiastic reception this information has received here. That many PANS families have been burned by a reluctance of pediatricians to prescribe antibiotics as they were quoted chapter and verse from the AAP manual. We are touchy on this subject, not because we are ostriches with our heads in the sand, but because we envision the writing on the wall and the lack of writing on the prescription pad.

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Do any of you remember when my dd12 had those crazy high liver enzymes 3 weeks after starting Bactrim last year? Like levels in the 700's when they should be in the 20's?? Well, gratefully, Dr. B ran those liver tests because she didn't really show any symptoms of liver distress, just some headaches which could be lots of things. Her reaction to Bactrim was unusual but now we know to stay away from it. I posted about it knowing many here had tremendous success, but they might want to get the liver checked.

 

I don't think with 1 in 5 Americans filling a script for Zith last year that docs will order an EKG for everyone, but for our kids that are on Zith long term prophylactics or treatment, an EKG might give peace of mind or alert parents to silent heart issues they didn't know existed and therefore, may not be the ideal choice for their specific child. I know EKGs are required before some psych med prescriptions are issued and it is an easy, painless procedure.

 

Zith is also known for stressing the liver. Even though the Bactrim really bothered her liver, Zith has caused her liver no distress, so it seems to be very individualized reactions. Also if you are dosing ibuprofen regularly, by itself or in combination with the abx, periodic liver testing is important.

 

Weighing risk is a burden we all take very seriously as we each try and do what is best for our children until they are capable of making these decisions on their own. My dd12 is also positive for one copy of the Factor V Leiden gene mutation which says she is at increased risk for vascular thrombosis and shouldn't take birth control pills. I'm not positive about this, but I bet doctors write scripts for BCPs every minute of everyday and don't run the test for the Factor V gene mutation (But now I know and will have to deal with that when the time comes....hopefully later than sooner for my sanity!!!) It just hasn't made front page news because the medical establishment has approved widespread birth control but is on a campaign to discourage antibiotic use. I'm not implying this finding is convenient, just the promotion of it.

 

I would respectfully submit that this is at the root of the less than enthusiastic reception this information has received here. That many PANS families have been burned by a reluctance of pediatricians to prescribe antibiotics as they were quoted chapter and verse from the AAP manual. We are touchy on this subject, not because we are ostriches with our heads in the sand, but because we envision the writing on the wall and the lack of writing on the prescription pad.

 

Very well stated.

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I most certainly did not expect an "enthusiastic reception" to what is troubling research and yes, could cause problems in an area already struggling for recognition and correct treatment.

 

But when members become almost hostile toward someone who is just posting information, not even an opinion...that is hardly "less than enthusiastic".

It is not the first time it has been noted here, and I am not the only one to have experienced it. Many people just leave, and that saddens me, especially when they have come here seeking help, and get pounced on because they may have inadvertently said something "wrong". They arrive here bewildered and leave wounded.

 

I do understand the frustrations and even the fury felt by parents just trying to get correct care for their sick kids.

Perhaps the tone can be softened some though, as it is not very nice to be on the receiving end of the ire, especially when the motive in initially posting is to help, not hinder.

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I most certainly did not expect an "enthusiastic reception" to what is troubling research and yes, could cause problems in an area already struggling for recognition and correct treatment.

 

But when members become almost hostile toward someone who is just posting information, not even an opinion...that is hardly "less than enthusiastic".

It is not the first time it has been noted here, and I am not the only one to have experienced it. Many people just leave, and that saddens me, especially when they have come here seeking help, and get pounced on because they may have inadvertently said something "wrong". They arrive here bewildered and leave wounded.

 

I do understand the frustrations and even the fury felt by parents just trying to get correct care for their sick kids.

Perhaps the tone can be softened some though, as it is not very nice to be on the receiving end of the ire, especially when the motive in initially posting is to help, not hinder.

 

Chemar,

 

Just want to be sure I didn't play a role in this. My response would have fallen into the "less than enthusiastic" camp since Zithromax worked quickly to help my son and has eliminated the need for ibuprofen -- for a while at least. We'll falling again, quickly...

 

Had nothing to do with the messenger - or the message -- just disappointment in the fact that many of us have dealt with resistance with regards to getting abx prescriptions and some docs will use this as another reason to deny...

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Chemar,

 

I went back and reread my posts. There are no overt or covert attacks on you from me. My criticism was explicitly of the study and its possible implications. We had a brief disagreement of fact about Medicaid to which I responded with certainty because I deal with that issue as a professional. It is a complicated issue and I can totally see how a misunderstanding could occur. I did not do a great job of explaining it. This document does a much better job.

 

http://www.kff.org/medicaid/upload/7846-03.pdf

 

Believe it or not, my last post was an attempt to acknowledge the importance of sharing such information by pointing to a specific example of my own. There is a difference between criticizing the content and conditions of the study (that is no reflection of you) and criticizing the fact that you were courteous enough to share a relevant abstract. My comments were explicitly about the study only. My comment about being received with a lack of enthusiasm was only about the study itself.

 

I truly apologize my tone did not convey that any criticism was solely directed toward the subject matter and not toward you personally. I think you are amazing and would never want to hurt you. I hope that you can accept my words as genuine.

 

Jill

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DS was in the most recent NIH clinical trial. I just got an e-mail from them this morning with this same info about Azithro. Just as an FYi, they thought I would want to be aware. That is the prophylactic antibiotic that NIH prescribed to DS post-IVIG.

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As I sit here pondering this research as both my girls are taking zith., I am trying to be realistic that although median age of subjects in the study was not revealed, it is likely it is of the geriatric population. Hospitalized patients have many secondary diagnoses and co-morbitites. The mention of it being on a mass number of Medicaid patients makes me wonder if this is a long term care population, which in my experience usually has cardiac involvement. I will not change my daughters' meds. EKG follow-up seems like a simple solution for our kids taking this long term. It's eye opening but would have more meaning if the age of the subjects were shared.

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Thank you for posting this, Chemar. Even though this study was done on adults I still think it is important information for those on Azith to know, particularly those who have homozygous c677t MTHFR. They are more at risk for heart problems. As a parent whose child is on Azith and has a c677t homozygous mutation, I for one will monitor DD's heart more often and make it a point to speak with our doctor about this study. And even if we decide in the end to keep her on Azith, at least we will have made an informed decision.

Edited by NancyD
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