Reversing Lyme Disease - Part 2
Once we received confirmation that both Michael and myself had Lyme disease, the mad dash to search out treatment began. I looked online first, googling every search term I could think of in regards to Lyme disease. From what I could determine there were three options: antibiotics, herbal/naturopathic approach or Chinese herbal medicine. At the time I just decided to look at the antibiotics, knowing I could revert to an herbal approach if that didn't work for me.
I set out for a plane ride to Northern California to see one of the most well respected Lyme Literate Medical Doctors in the state. Just getting to his office was a wild ride. On the airplane we hit major turbulence and a thunder storm. I began to have my first ever panic attack. All I could do was cover my head and curl up in a ball of mush on my husbands lap, praying that this ride of terror would end. My whole body was shivering and shaking as we landed. I spent the next hour and a half begging my husband to rent a car and drive us home, instead of flying back in that death contraption called an airplane. No budging there. I think he's still in a little bit of trouble for that.
When I arrived at the office there was an older lady in the waiting room. I asked her if depression was part of this disease. She said to me, "Honey, if you haven't tried to kill yourself yet, you're not that severe." I was in shock. I hadn't thought about that. I did feel an energy drain, pulling me down. Everytime a test result would come through that showed how messed up I was, I was pulled and drained farther and farther. When I finally met the doctor it was surreal. I mentioned to him that I saw sparkles above his head. I'm sure that confirmed my craziness in his eyes. He informed me that he really couldn't treat me effectively until I had all of my mercury fillings removed.
The flight home was worse than the flight going. This really sucked.
My husband and I seemed to dig the money out of nowhere to get these fillings removed. Unfortunately the dentist we chose talked a good talk about his method for removal, but when it was said and done, I was sicker than ever. He removed half of them and the pain was excruciating, something worse than child birth. The pain was so severe that it ran up the entire right side of my head. I became very sensitive to light and sound, often would sit on the couch with an afghan over my head only peeking at the TV through the holes, while it was turned very low. The pain was so bad, he prescribed me vicodin. Although I never finished the first bottle for fear of becoming an addict, I got to the point when the vicodin didn't even work at all. At that point I decided to seek out a different dentist. Hallelujah! I found Dr. Hansen!
Just the sheer concept of giving me oxygen before treating me actually took some of the pain away. They worked very slowly and carefully, watching my every wince. I seemed to metabolize the novacaine very quickly and needed a very high dose to complete the treatment, they were very sensitive to me and went at a snails pace to keep me comfortable. When it was over they sent me home with homeopathy pellets. These were to help with pain, inflammation and quick recovery. I was shocked to the core when after only 2 days, all the pain was gone. The pain from the original work and the work he just completed. It was amazing and a blessing for me because that whole ordeal was horrifying.
With a mouth free of amalgams I was clear to start treatment. We started with the Cowden herbal protocol, adding in some Zithromax and Alinia to treat co-infections and parasites. When it came to remembering to take my own treatment apparently I stunk. I would forget to take the herbs or only take the ones that were palatable. Cognitively I was serious about my treatment but there was something lacking there in the follow-through. Quite frankly I became extremely ill during this time. The Alinia literally turned my skin yellow, I had diarrhea and was dizzy, about to pass out most of the day. At the same time my hair was falling out and I had to deal with the fear of losing my hair. I had a sneaky suspicion that the Zithromax was doing that. I called the doctor and he encouraged me to push through. But in the end I encouraged myself to say "screw it". I felt like crap and was losing my hair! I understood the whole "herx" concept and needing to detox this crap out, but really this was pretty extreme.
A new set of symptoms began to develop during this time. I started to forget things. Not just things, everything! My husband found me once in the FIR sauna crying because I could remember our anniversary date. I thought maybe it was in the second half of the year but that was it. I also forgot daily things, honey do lists, etc. If I didn't write it down, it didn't get done. Luckily I always remembered to pick my kids up from school. Another symptom was the nighttime hallucinations. I have always been a sleepwalker, but this was something different. Nearly every single night I would wake up screaming, seeing bugs, rats, spiders (fill in the blank with whatever creepy thing you can think of) crawling all over me. After a quick switch on of the lights we would determine that it was "all in my head" and I would try to go back to sleep....although shaking of fear wondering which was coming next. This happened night after night. My mind was constantly chattering, thinking, making lists and it seemed like it wouldn't shut up. I was slurring my words wondering what I had just said many times. In some ways I felt autistic myself.
I had been on a gluten free / casein free diet for a few months now. My digestive system was in a constant state of...well, BURN! Enough said about that.
Somehow I still managed to drag myself into yoga class. Although I did move down to the beginner class which was easier. One day I tried doing a headstand in class. I was so proud, I'd never done one before. When I got home I showed my husband and the kids. Something felt weird though right after I did it. It wasn't right. That incident began what I call the "6 month headache from hell". No more exercise for me, the couch would become my friend for the next few years.
I found a group online who was seeing great results with high doses of salt and vitamin C. I gave that a try and many of my symptoms went away. I was starting to feel good again. I did this for 6 months. It was only 2 things to remember to take so I did a good job at remembering to take it each day. After 6 months I went off of it. Uh oh! It was too soon. You don't realize it's too soon until a few weeks go by and the bugs have the opportunity to repopulate. I was back to my old symptoms again. It wasn't as severe though, but they were back. When I started up the salt and vitamin C again, there were no improvements. I guess the bugs outsmarted me this time.
As I'm going through this, I am searching for treatments for my son. I was convinced that this was the "missing piece of the autism puzzle", the key to his recovery. I found an online group of about 500 parents who had Lyme disease and autism running rampant in their family too. The problem was that no one had any idea what to do about it. Some were trying antibiotics with mixed results and others were sticking with the natural methods. Me and my big mouth mentioned that we should get the autism doctors and Lyme doctors together for a physicians think tank. That concept spread like wildfire. We all kept talking about it. Being a former go-getter I decided with a few other moms to make it happen. We formed a non-profit foundation called Lyme Induced Autism Foundation and started sending out invitations to the doctors.
Boy was that a lesson. Most of the autism doctors gave me the virtual finger. I had responses back like....you couldn't afford for me to come, if we treat Lyme we will lose our licenses, etc. I nearly fell off my chair. Luckily the doctors that were meant to come did come and we had a great meeting with lots of fantastic input. Those notes are still available on www.liafoundation.org . I learned at that meeting that you must be free and clear of all symptoms for at least 2 months before decreasing treatment. Oops!
At that meeting was an anomaly. This doctor attended who was brought by a Defeat Autism Now doctor who was overseeing Michael's treatment at the time. He sat there with his viles of energetic substances and demonstrated to us his treatment method. It was very intriguing. I was sold. Enter in Dr. Toby Watkinson. We stopped everything and put our entire treatment of my family into his hands. He spent 2 years unpeeling layer after layer of infection and toxicity in myself, Michael and my daughter Jenna. By this time my daughter had begun to exhibit the dreaded food allergies and even had a very scary seizure. We were doing energy medicine. It was considered completely out of the box at the time. But our bodies certainly resonated with it and enjoyed the concept of not having to show pill after pill down our throats. Even I could follow the treatment with ease.
During this time we made major lifestyle changes. We rid our household of all toxic substances, changed our soaps, cleaning products and put good quality air purifiers throughout the home. We rid our kitchen of non-stick cookware, microwave and changed the water we drink. We had a home inspection which revealed a problem with radiation and electro-magnetic frequency. We made the needed changes and turn off the electricity every night in our home. We learned how to muscle test and tested everything we ingested to be sure it was resonating with us and creating healing for us instead of problems. We learned about choosing a cell phone responsibly by looking at the SAR ratings. At the same time I was doing the foundation as a volunteer basis for many hours per day, running myself ragged. I planned conferences, mentoring parents and just pushed through. But I still made great progress under his care as did Michael.
I always say that Dr. Toby brought us about 80% of the way. Unfortunately the recession hit and our household income took a huge cut. We could no longer afford our treatment.
The story continues in PART 3.