Azith - how much for fully grown and for how long

[Bat_Sheva_Myllys]

Our Sandra started Azith 500mg a day ca 1.5 years ago, but either the prescribing GP who is the only MD supporting us here in Finland nor I know exactly how to proceed. We were hoping to be supported with the necessary info. We could not get any IVIG again (last one was done in 2007 and the neurologist who did it got enough of treating this unknown condition and threw her to the psychiatrists who could not get themselves to believe PITAND or PANDAS existed. When the situation was gravest we thought trying Azith could do less harm then psycho medication (which did lots of harm and only that) or no medication (her condition was real bad, most of the time she could not get out of bed or control herself at all). It did not take too many weeks to see improvements, including the absolutely high IGG level for Mycoplasma which started to declineand was down to the threshold level in 6 months.

Some 3-4 weeks ago I decided to see if she would relapse if I were to cut the dose down to 250mg daily - so far so good and the slight improvements continue, but I am not sure we did right to lower the dose and neither would my GP know.

 

Would be great if those who have longer experience on abx, esp using Azith could share it with the rest and if those treating PITAND with AZITH could share with me off forum (rules must be observed) could share with me their MDs names and contact details (both phone and e-mail so that we could ask for help - we are of course ready to pay for good support) we shall be forever indebted.

 

Bat-Sheva and Sandra

 

[MaxParkersMom]

My son has been on Azith either every day or every other for at least three months straight and before that on and off since March. It is an amazing drug that reduces inflammation in the brain. For us the azith is not just about protecting against bacterial infections but also getting down that brain inflammation. My son is I'd say 90 percent back to normal which I am happily taking right now. I would not go below 250 but that is my opinion. I would keep doing either every day or every other with probiotics to protect his stomach. My son's neurologist told us he would need antibiotic protection until he was 25 years old to make sure all the symptoms were not going to become permanent. We cannot use fish oil because my son has negative response to it with an increase in PANDAS symptoms. I have not been on here as long as everyone else, but that is just what we are doing. I know I never want to go backwards so as long as my son responds to the Azith I would keep him on it. I am certain if we stop the brain inflammation would come back. If you need too print out all of these posts to take to your doctor and let him read them. I did that and will continue to do that so that I can fight and get treatment for my son. Good luck and I hope this helps.