Hopefully you read Silver's Story.
While we were at the Hyperbaric Center for her treatment, winning the Believe It Or Not Award, I stepped outdoors one day and unbeknownst to me, picked up a tick but like most people, didn't know it.
I became sick, and woke up one morning feeling like I had been run over by a truck. Everything hurt. I thought about who I might have been around with the flu, and couldn't come up with anybody.
I was nauseous, feverish, and my joints hurt like crazy. But when I took an inventory of symptoms, I realized that the joint pain was only on the right side of my body! Curious. Whatever. I also had nerve pain in my TEETH. Each tooth, upper and lower, again only on my right side, was lighting up with pain. And I had the feeling that there were bugs crawling in my hair. I couldn't get out of bed. I thought I really had a bad flu.
Silver came to me and said, "Mom, I think you got bit." "Go AWAY," I moaned. In that moment I knew she was right. How could this happen? I am a crusader for our daughter's health care, taking her across the country for help, and I get Lyme disease too? Not fair! Not fair!
I spent the day in denial. Tom was visiting from the west coast and took Silver to her hyperbaric dives. That night, Silver and I were in bed together and as usual I was reading her a book. I was really creeped out, and kept thinking I saw and felt bugs crawling around. I was using a small flashlight to illuminate the book, lying on my side, when again I thought I saw something crawling to my left. I sat up, and shone the flashlight in that area -- nothing. Then I resettled myself and pointed the flashlight on the book again, and there, sitting on the page of the book was an engorged tick. He had fallen out of my hair. It was page 164 of Valley of the Dolls. I reacted in a way I shouldn't have -- I smooshed him with my thumb, and my thumb slid up the page in my blood. Then I slammed the book. That's the end of THAT story!
Well, no doubt about it. It was NOT the flu. It was NOT instant arthritis. My teeth had NOT gone bad overnight. I had Lyme. And I had gone symptomatic really really fast.
I called Dr. Liegner in the morning. There were lots of Lymies ahead of me, and he couldn't see me for a week, so I started taking Silver's doxycycline. Over the next weeks, I felt terrible. I would have not been able to work if I had to. Just getting up and getting Silver to hyperbaric and back and wrangling food was almost too much. I didn't do hyperbaric because we couldn't afford for me to do it too.
It was a no-brainer when I saw Dr. Liegner. He even xeroxed page 164 of Valley of the Horses, with Mr. Tick's parts and my blood all over the page. I went on doxy and cipro. Now THAT'S a lot of fun!
I was on antibiotics for over a year. During the course of that year, there was a couple of times when I felt pretty good, and decided to take an antibiotic "holiday." Both times I really regretted it. It all came back quickly with a vengeance. I was sick again, fast.
OK, I thought, I'll just have to stay on antibiotics for a long, long time. During this time, over the course of a year, I spent a lot of time on Lymenet. It helped put things in perspective. Silver and I were bad, but there were a lot of people in much worse shape than us. I kept watching for postings by people on antibiotics that said they were better, that they'd gotten well. I didn't see them. The only group of people who seemed to be making real progress was the rifers. Rife kind of scared me a little.
During this time, Silver was not getting better. She was not able to go to school. She was constantly nauseous, whether she was hungry or had just eaten, she had a constant headache at the 5-6-7-8-9 level, and she was exhausted. Her life was the bedroom, bathroom, barcalounger. No friends. Nothing. Just reruns of Friends, MASH, and old Gary Grant, Katherine Hepburn, and Gary Cooper movies.
We had made an appointment with Dr. Charles Jones some months before (it takes that long) and we all flew to Hartford CT in May of 2004. We loved Dr. Jones! He is a saint -- I know I'm not the first person to say that! He concurred with the diagnosis of Lyme and Bartonella. He tweaked Silver's antibotic regimen and said that if the Ketek he was adding did not work after a couple of months, we were facing a picc line and IV antibiotics.
This was sobering for us. All these antibiotics and she really was not better. We knew we'd go for the IV if we needed to, but frankly, we didn't want to do it if we could avoid it. We're kind of holistic types, and we were concerned about burning up a growing immune system with these massive antibiotics. We're not health professionals, we're parents, and if there was ANYTHING that could work without hurting her, we wanted to know about it. Trouble was, we didn't know of anytyhing else to do.
We needed a miracle.
We had made a promise to Silver that we would get her well. (In retrospect, this was a "bold move" on our part.) We told her that we'd figure this out, somehow. And of course when your kid is this sick and the doctors that you pay money to for their expertise are saying to you in whispered tones, "You know how girls are at this age? So emotional.... you know there are SO many symptoms, and everything checks out just fine, so we think you should take her to therapy." Therapy? We bring a young woman into the ER with TREMORS and a headache that NEVER stops and nausea every waking moment and we should take her to therapy for emotional issues? (Would they have said that if I brought in a 13 year old boy? I doubt it.) But let's not digress.
We were in a tough place. It was now 2004 and the antibiotics were not working. At least they were not making her feel any better. I kept asking myself, does healing have to be painful? Must it be that you are made sicker to get better? It was just a question that I had no answer to. It seemed to me that the answer was no but what did I know. Not enough, that's for sure.
In May of 2004 I was on a list-serve for a women's entrepreunerial support group called NEW. Someone on the list made an announcement about a women's empowerment group. They were going to do a lot of good things, including going for hikes in Malibu. Hikes in Malibu??? YIKES! You couldn't PAY me enough to take a hike in Malibu, which is a huge tick-endemic area. I am NOT kidding. This is the most likely place where Silver got bit. So I shot off an email to this person, saying it sounded like a great workshop but in case she didn't know, Malibu is a hotbed of Lyme and precautions should be taken if you're going hiking there. So I pressed "SEND" and off it went.
When it landed at her computer, she was online, and with her was her friend, Michael Davis, former rocket scientist and health researcher extraordinaire. She looked at my message and said, "Hey, Mike, why don't you take this one?" So he answered me, and we began a back and forth email correspondence.
He sent me some information about alternative therapies for Lyme. And he said, "Check out these ideas. They are things that won't hurt her. And, and I'm not selling anything."
He had my attention because we were about at the end of our rope.
We were staring at a picc line and IV antibiotics. Our HMO had hung us out to dry, having invoked the "take her to therapy" prescription for anything they are not interested in finding out about, and besides, every time we took her to the ER they managed to hurt her, and she wasn't getting better with the best that the Lyme specialists had to offer.
We decided to ramp her down off the antibiotics for a while just to see where she was.
Frankly we didn't need expensive alternative treatments. We'd already done a refi on the house. I was sick with Lyme and couldn't work, we had paid for Silver and I to live on the east coast and do hyperbaric for 4 months, and we were bleeding financially.
Michael said it would cost about $500 out of pocket and he'd lend us the rest of what we needed. Hell, we paid $500 for a bottle of zithromax! Tell me more, I said.
He said this is a very smart bug. You're not going to beat it with just one therapy. You have to whack it with different modalities, not just one thing. And he suggested that we look into doing three things: ozone steam therapy, rife, and colloidal silver.
I had never heard of ozone steam therapy, but I did know that ozone is a powerful germicide. I had heard of rife technology, but it kind of scared me. And I did know about colloidal silver, and it kind of scared me too. My Mom had bought a colloidal silver generator, and we'd made some, but I couldn't figure out how the heck you controlled how concentrated it was. It made me nervous so it was sitting at the back of a drawer.
So what is this ozone steam therapy, I said. Michael said it's nothing more than oxygen, unstable oxygen in a steam tent. I knew that oxygen was good for Lymies, as the Lyme spirokete is anaerobic, and dies in the presence of oxygen. Lyme doctors will tell you to exercise to get more oxygenated. Exercise?? When you can hardly walk across the room? I don't think so. Got any other good ideas, doctor?
So here's the deal: you get a sauna steam tent (look on ebay under "steam sauna" or go to PROMOLIFE ). They cost $300 and under. It's a "tent" with a chair inside that you sit on. You step in, sit down, and zip yourself up. You'll be steaming from the neck down-- you don't want to breathe ozone as enough of it can damage lung tissue. On the outside is a steam pot -- I think it's really a modified rice cooker -- and you put distilled or reverse osmosis water in it and it makes steam, which through a plastic tube goes into the steam tent.
So you are in the tent, getting steamed, getting your pores opened, hopefully raising your core body temperature and into this you introduce pure ozone, which being unstable goes directly into your skin and into your blood and tissues. You are now creating your body as a toxic environment for anaerobic bacteria.
How do you get ozone into the steam tent?
Pretty easy. First you need pure oxygen and you can get that two ways: either from an oxygen tank (you need a prescription from your doctor -- strangely enough oxygen is a DRUG in the U.S. -- don't ask me why.), or you can get an oxygen concentrator and make your own oxygen.
If you get a concentrator, you can only get them USED because remember, oxygen is a DRUG. You can't buy one from the manufacturer because they are a medical device. So you go on ebay where you find them used for around $200-250. They will say that they are for hobbyists and welders and not intended for medical use. Whatever.
The third thing you need is an ozone generator. There is a good one for less than $50 available from http://www.ozone.enaly.com/EOZ-300Y.htm. If you have the money, I would get two of them. Then put them in sequence. More IS better.
So you're in the tent, steam is coming in. The oxygen, either from a tank or the oxygen concentrator, is being fed by a tube to the ozone maker. The output of the ozone maker is fed by another plastic tube into your tent -- just drop the tubing down the neck hole, or punch a hole into the tent and stick it in.
Now you are taking a steam sauna in a rich oxygenated environment. It's quite pleasant. You feel good during and after, at least everyone in my family does. I found that it really helped me sleep. I am -- ahem -- of a certain age, and I thought that sleep was just off the menu. Not so.
So Silver started the ozone steam therapy on July 11th of 2004. Both she and I did it. Our sessions were 20 minutes, once a day.
Michael lent us a rife machine that was one that's programmed for optimal health frequencies. I went over to his apartment to check it out and he turned it on, and within a couple of minutes I felt nauseous. I was about 10 feet from it, and I could feel it. He was closer to it and said, "I don't feel anything at all. That's because I'm healthy." I asked him to turn it off. But I brought it home. It was on loan for a couple of weeks from his 80-something father, who turned it on every night and slept with it near his bed all night. I couldn't imagine how.
I set it up behind the wall where the steam tent was (walls don't mean anything to rife machines), and ran it while Silver was steaming. And me too, for that matter.
And Michael made us some colloidal silver water.
In about 4 days, Silver came to me and said -- remember this is the kid who couldn't do anything more than navigate between the bedroom, bathroom and barcalounger -- she said, "Mom, would it be ok if I jogged down the driveway?" JOG down the driveway? As casually as I could muster, I said, "Uh, yeah, oh sure, go right ahead." And then she went outside and I went in another room and cried.
About 4 days after that, my husband was working and it would be nice to go to Trader Joe's for dinner fixings. We had not left her alone for a very long time, but she seemed a little better, so I asked her if she felt comfortable with my being gone for a half hour or so. She said, sure. I reminded her that she could call me on my cellphone if she needed me and I would only be a few minutes away. She said, no problem.
So when I came back about 40 minutes later, she was not in her customary place in the barcalounger. I was concerned. I found her in her room, and she was sitting at her computer IM-ing other kids. She had not used her computer in months. She couldn't sit up that long. And she was just too sick to talk to anybody.
But there she was, at her computer, and she was wearing a SHORT SKIRT and HIGH HEELS! The Girlfriend is Feeling BETTER!!!! I just said "oh hi" as casually as I could and went in the other room and cried.
In two weeks we had our daughter back.