Hundreds rally to protest new Lyme disease treatment guidelines.

Having suffered the ravages of this horrible disease for 17 years.--- I did not get any early oral antibiotics. After turning in an engorged tic the size of an acorn. I w-as told there was no Lyme Disease in Texas. Brain Fog, Cystitis, fibromyalgia, chronic kidney infections, pain in all of my joints. Two shoulder surgeries, cervical spine surgery, three feet surgeries, multiple tumor growths that made no sense, constant knee swellings, unexplained drop in oxygen saturation levels, angina on a cyclical basis only, eye floaters, headaches, finally reduced to a wheelchair, and oxygen on a constant basis until tested for Lyme at the IGENEX Lab in March of 2005. Was found to have two types of Borrelia, Babesia Microti, Babesia WA1. The IV therapy gave me my life back and all symptoms abated. How does an infectious disease doctor excuse his stupidity when there are so many of us out there. This is a Pandemic Disease and you all should be ashamed of what you are doing to those of us that are ill and finally getting well. Not having had oral doxicyline that should have been given back in August of 1989, my disease did not have a chance to be irradicated. So it grew into a cystic form in my red blood cells, so now pills will not work. What is the disease community answer to this? The malaria I suffered, to be told it was menopause when I had had a total hysterectomy in 1986, was unbelievable - making me so sick. There is a good chance that the brain artery rupture I had in 1999 was from the Babesia infections. So I say these doctors that don't know what this disease is all about are either getting a cut from the Ins. Companies and HMO's or need further education and clear their heads and smell the roses. Just give doctors, with further education in this area, the blessing to treat the patients as they need to be treated and not die. When I finally got to a Lyme doctor in February of 2005, my CD57 was 60. and I was going to expire soon. Now I have my life back and am a vital person again. Where have you doctors been that you have not heard our stories or seen some of the wonderful results that good medicine can give? Respectfully, Pam

Hello, can you tell me how are you now? Are you healthy? What have you helped to win with borrelia? Our doctors are stupid as in your country. Can you tell me wohat helped you?
I will be thankfull to you.
Michal

I was diagnosed with chronic lyme disease in 15 yrs ago. I had been suffering with intermittent joint pain, severe headaches, rashes, and cystic acne, depression, anxiety,etc. I went from doctor to doctor(male) and was told every thing from lose weight(I was not overweight at the time),early menopause(no bloodwork to check hormone levels) to see a shrink, which I did. Still no change until I was referred to a internist by my eye doctor(oh did I mention vision problems) The new doctor(female) actually listened to me and agreed that something was wrong. All blood work was negative including rheumatoid arthritis which I also had been diagnosed. She said her experience was that chronic untreated lyme patients often no longer make antibodies and that a month of antibiotics often eliminates the symptons. At last within two weeks knee pain had diminished and was gone after one month. I then tested positive on the Western Blot. The longest I have been symptom free has been 18 months. Usually 1 to 2 months of azithromycin does the trick. It is as though the fog has lifted and I feel like a human again. My prescription has refused to pay for more than one week of azithromycin. It is expensive, even the generic, 500.00 a month obviously due to new guidelines for treatment. I can only hope that a doctor that has had lyme disease finally gets on one of these decision making panels. My doctor has closed her practice due to harassment for her treatment of lyme patients. I am really at a loss right now.

[Your case sounds exactly like mine, but they put me on zithromax. The lyme was undiagnosed for about 12 years and has resulted in 24/7 oxygen, blood clotting, tumors, female issues, etc. What kind of IV are you on. who="Pam "]Having suffered the ravages of this horrible disease for 17 years.--- I did not get any early oral antibiotics. After turning in an engorged tic the size of an acorn. I w-as told there was no Lyme Disease in Texas. Brain Fog, Cystitis, fibromyalgia, chronic kidney infections, pain in all of my joints. Two shoulder surgeries, cervical spine surgery, three feet surgeries, multiple tumor growths that made no sense, constant knee swellings, unexplained drop in oxygen saturation levels, angina on a cyclical basis only, eye floaters, headaches, finally reduced to a wheelchair, and oxygen on a constant basis until tested for Lyme at the IGENEX Lab in March of 2005. Was found to have two types of Borrelia, Babesia Microti, Babesia WA1. The IV therapy gave me my life back and all symptoms abated. How does an infectious disease doctor excuse his stupidity when there are so many of us out there. This is a Pandemic Disease and you all should be ashamed of what you are doing to those of us that are ill and finally getting well. Not having had oral doxicyline that should have been given back in August of 1989, my disease did not have a chance to be irradicated. So it grew into a cystic form in my red blood cells, so now pills will not work. What is the disease community answer to this? The malaria I suffered, to be told it was menopause when I had had a total hysterectomy in 1986, was unbelievable - making me so sick. There is a good chance that the brain artery rupture I had in 1999 was from the Babesia infections. So I say these doctors that don't know what this disease is all about are either getting a cut from the Ins. Companies and HMO's or need further education and clear their heads and smell the roses. Just give doctors, with further education in this area, the blessing to treat the patients as they need to be treated and not die. When I finally got to a Lyme doctor in February of 2005, my CD57 was 60. and I was going to expire soon. Now I have my life back and am a vital person again. Where have you doctors been that you have not heard our stories or seen some of the wonderful results that good medicine can give? Respectfully, Pam

My daughter has had lyme for almost 4 years now. She even had the bullseye rash about 3 or 4 weeks after the tick bite. We took her to 3 different hospitals including Childrens Hospital in Denver, and to 3 different doctors offices. Not one of them would say lyme, even though I asked them about it. I finally found someone that specialized in lyme disease in Colorado Springs. She said that my daughters signs were classic lyme symptoms and that the bullseye rash made no question about it. My daughter is going through antibiotic treatment right now. She will go through 4 different anti-boitics(one for the clamidea caused by the same tick) and she was over all her symptoms in less than 3 weeks, although the treatments will last much longer. Doctors don't like being told what you think and they sure don't want to acknowlege when they are wrong.