Continuing Bio30

I have been on Propolis Bio30 for 18 months now. While following the ongoing discussions revolving around the treatment on Trial Talk mailing list, I found that my blog on propolis is listed under the Bio30 publications! I feel so legitimate. I have actually been reconsidering continuing the Bio30 Propolis. In the time I have been taking it I have had no tumor growth, however I am unsure if I believe it is due to the propolis, or simply because I am not pubescent, pregnant, nursing or on birth control for the first time since age 13. Hormones are intricately connected to tumor growth. I spoke with Dr. Adler from Stanford University, who actually created the Cyber Knife, this week. I adore him, he has a wonderful personality and a fierce intelligence. He told me he is skeptical I am "getting anything for my money" with Bio30. So the last few days I have mulled it over, I would hate to stop taking it and then have one of my many tumors try to grow freakishly large and cause irreperable damage. If I did stop, and the tumors then started growing, I would have really good evidence that it does work. Then I can just begin therapy again, and know JT can take it at age 10. I am not sure if that is a risk I should take. My tumors have been stable for longer than they have ever been. Long enough that most of my new friends have no true idea of how sick I get, or why I run. I have rebuilt my life since the last surgery and losing the rest of my hearing. I have a great group of girlfriends, my running, I've gotten more fit and healthy then I thought possible for myself. I think it is best to play it safe, and continue the propolis, and just be grateful I am even able to try anything at all.

Back on the wagon!

I took a great, mostly uphill, 7 mile run Saturday! I feel so much better already! I actually had to walk just a few times, on the steeper parts of the hills. I feel 7 miles is a solid accomplishment after almost a month of being sedentary! Hopefully tomorrow I will run a flat run, and cover 10 miles. I will be kicking ass and taking names in Vegas!

I also had to stop taking propolis for a month while I had my wisdom teeth out. You can't take propolis 2 weeks before or after surgery, something about the blood not clotting. So this week I get back on track with both.

It feels great to have that little pull in my calves everytime I walk, the burn in my legs when I lift anything, and that stiffness anytime I try to crouch. Everytime I wince a little I know I had a good run!

Propolis Bio30

At some point in the future I have no doubt scientists will cure NF2. Cure would literally mean a person no longer has NF2 after the treatment. As of now that is not possible. NF2 is a chromosomal disorder, meaning it is programmed into our DNA, and a part of every cell in our bodies. The best way we can fight the disease now is to find drug therapies to stop tumor growth. Currently the only way to “treat’ NF2 is by surgically removing tumors that are causing a problem, or radiating them. The procedures themselves cause almost as much risk as the tumor, if not more in certain circumstances. The tumors can grow anywhere, on and through any nerve, choking it out and causing loss of functions. It is common for a person with NF2 to become blind, deaf, paralyzed or have limited control of the extremities, have a loss of urinary and bowel control, an inability to speak and subsist on a feeding tube. All of this can happen in a single person over time from this disease. This is not an exaggeration, or an extreme example. My Grandmother, Uncle and Mother were all deaf, partially blind, bedridden and unable to control their personal functions for years before passing on. That is why it is absolutely critical that we raise funds for research, because nobody should have to suffer through these cruelties of nature.

There are several tumor growth suppression therapies being researched now that may have the capability to stop NF tumors from growing. Propolis is a drug therapy I am currently taking as part of a non-clinical trial. In a recent study mice were implanted with NF1 tumors and then treated with Propolis, the tumors were suppressed 90% in 100 days. Propolis is extracted from the resin bees use to build their hives, and has something in it called CAPE which has proven tumor fighting abilities. CAPE blocks the PAK enzyme which is responsible for the abnormal cell activity that leads to tumor growth. The specific form of Propolis I am taking is called Bio30, and it is available from Manuka Health in New Zealand for less then a dollar a day for treatment. Propolis has been used as an over the counter herbal remedy to strengthen the immune system for many years.

I have been taking Propolis for one year this month. Before beginning treatment I had a slow but steady progression of tumor growth on each biannual MRI. After 6 months of treatment my MRI showed no growth of any of my tumors. I am due for another MRI in the next couple of months, and will be sharing my results then.

If you are interested in Propolis treatment for NF1 or NF2 you should check out the “NF2TrialTalk” yahoo groups list. Trial Talk is the place to find information on all current drug therapies for NF, including the home of the Propolis Bio30 chart.

Everything in this post is from my own personal knowledge, and I have checked my facts as thoroughly as possible. I am still not a doctor, and if anyone has any further information please feel free to share it in the comments.