When you want to give up … read this

[troysmom]

My son started minocycline at the end of April 2009, we were not working with an AP doctor just someone willing to prescribe the minocycline.  It was trial and error, having to learn a few things the hard way, the most important thing we learned with minocycline, more IS NOT better, that first month was the toughest, I second guessed myself every day, which was easy to do when my friends, family and doctors were doing the same thing, the only place I had for support was this forum. 

My son suffered through terrible symptoms brought on by the dose being too high, it tor eme up everyday to see my son suffering because of decisions I had made, I had fought so hard to get to a point were a doctor would treat him with Minocycline and now it seemed to be reaking havok on him.  It was the worst place for a mother to be.  and yet I still believed in it, and most of all my son had faith in me, he trusted me through the pain, tears and anger, he trusted me and I trusted my instinct.

I learned you can keep going long after you think you can't. 

I still don't know if this will be the thing that works for my son long term, I can't explain why it works, and I can't tell you to do this, I believe you have too find what is right for you, I believe there is pros and cons with every decision you make.  I remember writing on the forum and saying I wanted to stop the minocycline, I couldn't stand it anymore, my son needed to be better, YESTERDAY, but I didn't stop, my son didn't give up.  It takes time even though time feels like the last thing you can give, most of us come here after we have already tried what seems like everything, most of us have already dedicated so much time to treatments, the last thing we want to give is more time.

My son still has bad days, he is not in the clear at all, but he has improvements and for now that is enough, improvements from minocycline and cyclosporine, another very important lesson I learned was inflammation acts as a barrier to the antibiotics, when we first started the antibiotics my son was not taking anything other then natural supplements to calm the inflammation.  Supplements were not enough, he had to also be on low levels of an immune suppresant to help calm the inflammation we chose cyclosporine because it was the one drug we had experience with that didn't cause any side effects.

I can't list here all the improvements we have seen but they have been documented in my previous threads, it has been a looooong journey and it continues but for the first time we feel like we are on the right side of the battle field.

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