Yesterday, we had our first appointment with Dr. Amiram Katz. He is such a great guy; very concerned, very easy to talk to, and just overall very caring.
It was nice to have things explained from a neurological perspective, although I didn’t exactly like what I heard. The first thing he said was that the Lyme has caused an auto-immune response in his body. The auto-immune response means that his body is attacking itself, specifically his motor neurons. It believes they’re a threat to his body, so they’re destroying them before they make their connections to his muscles and as a result, his muscles waste away. He also said that his body has overactive glutamate at the site of its nerve cells. In the most basic terms, the nerve cells send signals to each other and to organs of the body w transmitters like glutamate. It’s supposed to be a quick step but if the glutamate lingers, as in Tyson’s case, it becomes toxic and results in cell death. This scenario is typical in ALS patients. This can damage the brain (as we saw so clearly in Tyson’s first brain scan in India) and to his entire Central Nervous System. Dr. Katz has prescribed Tyson a medication that is typically used by Alzheimer’s patients because it works to protect the brain. He said not to be thrown off by the word “Alzheimer’s” and that basically anyone could take this medication, it’s not a ridiculously strong or potent drug. Dr. Katz’s goal is to stabilize Tyson, first and foremost and to protect from further onslaught in part by boosting his immune system. We first saw stabilization in Tyson’s condition when we began the stem cell therapy and Dr. Katz acknowledges that and concurred that the only chance for survival in his case is to continue with the stem cell therapy until Tyson’s body is fixed. Once again, what the stem cells are doing is repairing the damage throughout his system and regenerating new cells (or soldiers, as I like to call them) to fight. He drew some labs to see exactly what approach he wanted to take. He is also adding Low-Dose Naltrexone, which works to normalize the immune system and halt the progression in diseases like ALS.
He was surprised to hear Tyson survived the bi-lateral pulmonary emboli last fall and said we are lucky to have gotten through it. One of the tests he’s doing is to a genetic clot deficiency test to see if he’s predisposed to clotting, which we suspect he is not since we safely made it back and forth to India 3 times.
I had flashbacks during the meeting of our painful neurology appointments from the past two years. I hate rehashing piles and piles of test results and findings and I hate hearing words like “axonal damage”, “motor neuropathy”, “denervation” and “this medication has been proven to prolong patient’s existence”. It’s brutal to hear once, let alone repeatedly. However…the difference here with Tyson’s case is that this has all been caused by Lyme disease and because of that, it is possible that it can be reversed. The “top neurologists” we met with prior told us it’s irreversible because they simply don’t understand how Lyme works. In my opinion, if Tyson truly had ALS with no Lyme interference, he would not be seeing any improvements like the ones we’re seeing. And so because of that, we remain hopeful. And no, I don’t think we are crazy or drunk with optimism…I truly believe we will make it. It’ll be a miracle and his story should be studied because as scary as this sounds, it could happen to anyone else. He will beat the odds.
So, here we are. Again. We can’t deny these neurological findings- they are factual. Also, we can’t deny the remarkable, almost unexplainable progress we’ve made with the stem cell therapy. It is the ONLY method of treatment that has been able to stabilize him and allow for small gains. So, our doctors are all in agreement, we need to keep going with the stem cells (as we had planned to!) because it’s seemingly the answer we need.
It was a quiet ride home, which reminded me of the countless doctors visits last year. We regrouped today, trying to make sense of every last bit it all and we are still up for the challenge. We can’t wait for the new year when we can be super aggressive with physical and occupational therapy, we are going to do everything we need to do with his antibiotic/supplement protocol and just stay positive and above all, control what we can control. We are both highly competitive people and really don’t like losing 😉 Bring it!!
Once again, I hope I’ve explained things okay…if I messed something up and notice it down the road, I’ll make sure I clarify myself 🙂
Thanks to you all for your continued love and support and for all of your kind words regarding our progress and our new addition! It’s all a little scary, but we will make it.
All our love,
Ann & Tyson