Thursday, June 9, 2011
Use this site
Please use this site to get some basic information. Do not get scared. Get vigilant. Get pro-active. Your health and that of your family is in your hands. Urge your doctors to get Lyme literate. Tell them it is important to you. And investigate the basic resources here. Let me know if you have questions or have a good resource to share!
My Son
My son was bitten by a tick at his preschool. I saw the tick bite and a red rash around it and took a picture. I went to our local doctor's office and they offered the standard test which I know to be inaccurate 70% of the time. They refused to authorize a lab order for IGeneX, the one lab that does an accurate test. Why???
I went back to the clinic that treated me (effectively) and got the right test ordered. It took weeks to navigate through all these doctors offices and appointments just to get a good test done. It took several more weeks to get results. In the mean time, we started my son on amoxicillin. The results came in and I was able to get an appointment (a week later!) to find out he was positive for Lyme. I was not surprised. He will be on the antibiotic for another month or two. And he is taking vitamin D, which he is low on, as well as probiotics to keep his digestive system in balance.
I had to fight tooth and nail to get my son two basic things: a good test, and a proper course of antibiotics. Why should it be so hard to get basics like this? This was an early diagnosis, not the prolonged "Chronic Lyme disease." It is well known that the course of treatment is about 6 weeks. But our doctor wanted to give him ten days of antibiotics. She also did not want to authorize an effective test.
Without a complete cycle of treatment, this child would have recurring chronic Lyme disease his whole life. That means disrupted cognitive ability, disrupted sleep, possibly depressions and anxiety, pain...why would any medical establishment wish to gamble with a person's life by not fully addressing this possibility?
I went back to the clinic that treated me (effectively) and got the right test ordered. It took weeks to navigate through all these doctors offices and appointments just to get a good test done. It took several more weeks to get results. In the mean time, we started my son on amoxicillin. The results came in and I was able to get an appointment (a week later!) to find out he was positive for Lyme. I was not surprised. He will be on the antibiotic for another month or two. And he is taking vitamin D, which he is low on, as well as probiotics to keep his digestive system in balance.
I had to fight tooth and nail to get my son two basic things: a good test, and a proper course of antibiotics. Why should it be so hard to get basics like this? This was an early diagnosis, not the prolonged "Chronic Lyme disease." It is well known that the course of treatment is about 6 weeks. But our doctor wanted to give him ten days of antibiotics. She also did not want to authorize an effective test.
Without a complete cycle of treatment, this child would have recurring chronic Lyme disease his whole life. That means disrupted cognitive ability, disrupted sleep, possibly depressions and anxiety, pain...why would any medical establishment wish to gamble with a person's life by not fully addressing this possibility?
My Story
About five years ago I was diagnosed with Lyme disease, after having it for five years without knowing. I underwent two years of the best treatment, at one of the best clinics, located in Sonoma County. During treatment and since, I have made it my business to learn everything I could about the disease and fully understand the treatment I was getting. I am symptom free for more than three years.
Unfortunately, I hear many stories about people who are not as lucky as I was. They suffer endless treatments (ten years...more?) and get little relief. There is just a pathetic lack of good information sharing among the medical community. What I have found is a strong resistance in the medical community to come out of the stone age and educate themselves on how to treat this infection effectively.
The truth is that the Center for Disease Control (CDC) lists Lyme disease as one of the fastest growing epidemics in the world.
The truth is that they estimate 10 times more cases occur than are reported.
The truth is that only about 40% of people who get Lyme disease recall having the bulls-eye rash, or getting a tick bite. Diagnosis must be done clinically, that means doctors in offices everywhere must learn to spot the collection of symptoms and diagnose based on symptoms.
The truth is the usual test doctors order is wrong about 40-70% of the time.
The truth is this is an epidemic and until the medical community comes out of their fog, we as the general public must usher ourselves through the basics to get appropriate care. If we do not do so, we will suffer the consequences.
The truth is Lyme disease has sever consequences: it is a disabling, horrible disease, and no one should have to, or needs to suffer with it.
Unfortunately, I hear many stories about people who are not as lucky as I was. They suffer endless treatments (ten years...more?) and get little relief. There is just a pathetic lack of good information sharing among the medical community. What I have found is a strong resistance in the medical community to come out of the stone age and educate themselves on how to treat this infection effectively.
The truth is that the Center for Disease Control (CDC) lists Lyme disease as one of the fastest growing epidemics in the world.
The truth is that they estimate 10 times more cases occur than are reported.
The truth is that only about 40% of people who get Lyme disease recall having the bulls-eye rash, or getting a tick bite. Diagnosis must be done clinically, that means doctors in offices everywhere must learn to spot the collection of symptoms and diagnose based on symptoms.
The truth is the usual test doctors order is wrong about 40-70% of the time.
The truth is this is an epidemic and until the medical community comes out of their fog, we as the general public must usher ourselves through the basics to get appropriate care. If we do not do so, we will suffer the consequences.
The truth is Lyme disease has sever consequences: it is a disabling, horrible disease, and no one should have to, or needs to suffer with it.
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