I was diagnosed with ALS in April 2002. I was also diagnosed with Lyme Disease in July of 2002. I've been taking antibiotics ever since. I went from 175 lbs. to 110 lbs. in January 2006. I couldn't eat or drink at that time. I received a feeding tube on my 46th. birthday. In March 2006 I nearly suffocated from mucous in my lungs. I spent two weeks in ICU and received a trach and was put on a vent after 10 days and regaining some strength On Sept. 2007 I went to the ICU with pneumonia and two blood clots in my lungs. The good news was, I weighed 215 lbs. when I was admitted. Back in 2005 we were told by a hospice caseworker that the feeding tube and vent would be pointless as I had a terminal disease. I'm glad we didn't listen to her. I can communicate (speak) even though I'm on the vent, which surprised my lung doctors. I'm using a Pulmonetics turbine vent and a Bovina trach. Through the years I have been using herbal supplements and holistic tinctures along with multiple combinations of antibiotics, including IV antibiotics. At the end of 2005 I couldn't move a muscle. I was basically a quadriplegic. But I am now able to move some fingers and toes, and can feel other muscles beginning to respond throughout my body. I am also able to eat solid foods, including steak, and drink water and swallow pills again, for over a year now. Several years ago I was on the health boards regularly, but my advice was not received well on this ALS topic board. Just trying to reach out to others to seek a Lyme-literate medical doctor (LLMD)to help you fight back from this diagnosis. Check the Lyme Disease panel to find a LLMD near you. I have been to two in Pennsylvania, and one in Wichita, Kansas. There are many others around the country. Many of us have not survived but I am improving, thank God. My wife and son are occupied working at keeping up with everything and I have a tremendous volunteer helping me to get back on line once a week. We'll try to offer any information but we'll be sporadic with response to questions.
Just checking in. Still moving fingers and toes. Feeling increased responses in Pecs and deltoids. My wife suggested I recommend blood filtration therapy that is used for Guilliane-Barre syndrome. I urge all ALS patients to request this treatment of their neurologist along with blood tests for Lyme disease from IGenex and Bowen Laboratories as a CDC regcognized test location and procedure. Remind your neurologist that failing to perform tests requested by patients jeopardizes their medical license. This is a difficult battle and you must play hard ball with your life.
God bless you,
.... Several years ago I was on the health boards regularly, but my advice was not received well on this ALS topic board. Just trying to reach out to others to seek a Lyme-literate medical doctor (LLMD)to help you fight back from this diagnosis....
Jon it is good to see that you are back, though perhaps temporarily. Over the past couple of years I've read a few of your posts so it was a pleasant surprise to note your return! I hope and pray that your health will continue to improve..
I understand quite well about the advice not being well received on the boards. People with Lyme's symptoms are cropping up on many of the boards, but they can't seem to get past the symptoms to identify the cause! It's unfortunate.
Bless you for getting the word out, for telling it like it is. If one person listens, it will be worth it.
I've been stable for over a year. I had an appointment with a doctor who was going to give me blood therapy, but he had something come up and we had to reschedule for Dec. 8. I'll keep information coming as things come forward.
We all have to be aggressive in getting to the bottom of our illnesses because doctors don't always know best.