Thank you for coming here and sharing your story. I'm truly sorry that this has happened to you. I can't say that I have any idea what it must be like for you to be in your shoes. I don't think that any of us can! I do have great compassion and empathy for you and your family in what you're going through.
Please feel free to come here anytime to give us updates on your situation. Whatever support we can do for you, we will do it and we're here for you anytime!
I want to say your message here is very important and I hope people will begin to wake up with greater understanding of this important topic. I see several things about your valuable message that I'd like to point out:
1) I feel very strongly that something must change in how people are being ignored with medical complaints. Although I don't know for sure, you must have felt ignored on some level by your physician to take the route that you did by using an herbal product, as a blind treatment. Even if you had listened to your doctor you could possibly be in the same boat which goes to my next observation.
2) You bring solid information here in terms of letting people know that proper tests are important because one can never know what kind of organisms people harbor. The medical establishment has terrible lab testing methods and are unable to find a number organisms, often misdiagnosing people or ignoring them completely. Read this:
"That's what was most frightening was all these tests were coming back normal, yet I knew something very wrong was happening with me. It's a nightmare, a nightmare that never goes away, and it's gotta, I hope it goes away sometime."
It turns out that his main problem was mold related.
3) I've brought up the co-factor issue many times; it is very important and is rarely considered by conventional doctors or herbalists/alternative practitioners. The 3 main co-factors are worm parasites, molds/fungi, and bacteria. There are other co-factors too but those are the main ones to start with. To emphasize -- broad spectrum treatments -- whether Humaworm or conventional -- I believe, do damage whether people realize it or not! I'm finding more information in this as I do my research. We've been convinced by the medical establishment that this is how all treatments should be carried out; and, sadly alternative practitioners have followed suit. I've done it myself using herbal products as a practitioner. Knowing what I know now, I won't treat anyone without proper testing methods. People are being treated "blindly" and this leads to serious problems down the road.
4) We have been conditioned to believe that it is best to turnover our lives to people when it comes to medical problems because it is someone's else's job. People who go to doctors or consult with alt practitioners don't ask appropriate questions. We don't even bother looking into the situation seriously. Trust is always a factor BUT with that trust we must look into things ourselves with at least appropriate scientific reading material to see if it is the right thing to do! Although I don't have ALS, I seriously messed myself up when I trusted doctors who gave me medication for parasites. These things scattered everywhere! This is just one thing out many problems I encountered. When I came back to the doctor with an inquiry, hehad heard of it but didn't think it was going to happen; he was never taught about resistance! In researching this afterwards I discovered that this occurrence does happen but it was too late! I was able to show him what I learned because he didn't realize this possibility. You have no idea how many times I've wanted to kick myself for this fatal error by not doing thorough research because I've always read something about meds and what's going on, or an illness to get a better understanding. I didn't read the right materials and I didn't ask the right questions. I've suffered greatly.
Again, I want to thank you for coming here to share your story. Even though things are changing rapidly with you I hope that you will find something that will slowdown the process for you. Do you know if it is possible? Please come back and make more posts to teach us about ALS.
My heart goes out to you. Enjoy life in whatever way that you can, especially during this holiday season.