A great difficulty with the protocol is trying to understand what is happening and knowing when to make adjustments. It is difficult to understand when you are having a die off reaction or when you are reacting to either the antifungal medication or the Chelating Px. A third possibility is that a bacterial infection has taken hold.
We have learned a hard lesson these last few months. We began the protocol in April, started getting better around July then the three of us (my wife, youngest daughter and I) all got bacterial infections in August. Despite that, we continued to get better for while, but then things got worse. My wife eventually got her bacterial infection under control but my daughter and I became much worse from about mid-October until recently. We went on numerous rounds of antibiotics to no avail. I became about as bad as I have ever been.
Thankfully we were able to turn things around. My ENT had commented that the reason I couldn't overcome the sinus infection was because I had so much inflammation which might be rendering the antibiotics ineffective. I asked him if the Ampho B might be causing the inflation and he said it possibly could. Later, my wife and I realized that she became better some time after she had switched from using the Ampho B to Nystantin.
A few weeks ago my daughter and I stopped everything - the antibiotics, the Ampho B and the Chelating Px for several days. We then switched over to Nystantin every other day and started treating the sinus infection with Levaquin. We didn't realize that, even though we felt we were tolerating the Ampho B just fine, it was actually causing a great deal of inflammation which was effectively preventing us from clearing the bacterial infection. We recently completed the round of Levaquin and we are doing better. Just stopping the Ampho B made me feel better, even before starting the Levaquin. It is noteworthy that we had used this antibiotic without effect previously, and it started working only when we stopped using the Ampho B.
Brewer has indicated to me that some people do not tolerate the Chelating Px and he is treating some patients without it. Time will tell whether this can be effective.
So here is my take away from all of this:
1. Even if you tolerate the Ampho B ( or maybe the Nystantin or Chelating Px) it might be causing inflammation.
2. The inflammation might be making you feel worse in and of itself, and/or it might be preventing you from clearing a bacterial infection.
Even though the Nystantin probably is not causing a great deal of inflammation, I've decided to continue every other day treatment rather than daily in an effort to minimize inflammation and help keep bacteria under control. We are also starting a maintenance dose of azithromycin prescribed by our immunologist.
I came across a very informative article that indicates that sinus fungal growth can cause damage which reduces the ability to control bacteria.
http://www.sinuses.com/md.htm
"Fungal growth was found in washings from the sinuses in 96% of patients with chronic sinusitis. Normal controls had almost as much growth, the difference being that those patients with chronic sinusitis had eosinophiles which had become activated. As a result of the activation, the eosinophiles released MBP (Major Basic Protein) into the mucus which attacks and kills the fungus but is very irritating to the lining of the sinuses. It is believed that MBP injures the epithelium and allows the bacteria to proliferate. An
assay has been developed for major basic protein (MBP) which may be helpful for evaluating sinusitis due to fungal disease."
We lost a great deal of time and went through some dark days to figure this out. I'm hoping others can avoid this scenario. We are feeling better again (though not as well as a few months ago) and I feel like things are back on track.
If you're in KC, I sure hope the sun comes out for us soon!
