chronic lyme disease
Chronic Lyme or not - Get educated
06/01/09 10:59
A national coalition of health care workers, policy makers and others, the Partnership to Fight Chronic Disease (PFCD), is attempting to educate Americans about the significance of the crisis in our current overall state of health.
The PFCD mission:
* The PFCD believes that rising rates of chronic health problems pose a significant and unsustainable burden on the U.S. health care system, and that the viability and strength of the system presently and in the future relies on a willingness to enact policies that help Americans better prevent and manage chronic illnesses.
The PFCD and the Centers for Disease Control (CDC) do not categorize Lyme as a chronic disease. Therefore, it seems unlikely that this organization will help Lyme patients who continue to suffer with Lyme symptoms even though they've already been treated according to the CDC guidelines--a 30-day course of antibiotics.
However, if you suffer with chronic Lyme you may be interested in these six "unhealthy truths" about chronic disease in the United States, which I copied from the PFCD website:
* Truth #1: Chronic diseases are the No. 1 cause of death and disability in the U.S.
* Truth #2: Treating patients with chronic diseases accounts for 75 percent of the nation's health care spending.
* Truth #3: Two-thirds of the increase in health care spending is due to increased prevalence of treated chronic disease.
* Truth #4: The doubling of obesity between 1987 and today accounts for 20 to 30 percent of the rise in health care spending.
* Truth #5: The vast majority of cases of chronic disease could be better prevented or managed.
* Truth #6: Many Americans are unaware of the extent to which chronic diseases could be better prevented or managed.
If you consider yourself ill with chronic Lyme disease, one "healthy truth" to embrace is to get better educated about how to manage your illness. I realize that it's the toughest job you can take on, especially while you're sick. Believe me, I know because I've been there. Although the status of "chronic" or "Post-Lyme Syndrome" may not be easily or quickly determined by the policy makers, your health is what counts here.
Get educated about ways to manage your health, such as eating foods that will nurture (organic greens and proteins), not harm you (refined sugar).
LDRD members, login to listen to Lyme experts.
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chronic Lyme disease is just a name
05/29/09 16:43
When I was very sick with chronic Lyme, the scariest thing was not the agonizing pain in my skin and muscles, not that my shin skin had deteriorated into raw meat, and not even that I had trouble walking and could barely talk without stammering.
The scariest thing, the thing that blew my mind was that the infectious disease doctor I turned to for help REFUSED to treat me for Lyme. I had tested positive, yet she stood there shaking her head, insisting that I must have MS instead. She basically blew off the positive Western Blot and ELISA tests.
The doctor breezily observed my skin rash, which had become so severe that I had developed a staph infection that put me in ER, and told me, "You are too late."
Huh? I couldn't think very clearly because of the brain fog, but this response just sounded utterly wrong to me. I was speechless.
She then dashed off a prescription for corticosteroids, which she said was my last hope. I took them, and the Lyme bacteria multiplied rapidly. Needless to say, my condition went from bad to worse.
I was in terrible shape when I staggered up to the window in her clinic and requested my medical files. My legs could barely hold me, and my hands and voice were just as shaky and weak. I had begun seeing a naturopath who advised me to retrieve my records from the ID doctor's office and take them with me. He treated me for Lyme with antibiotics and a host of supplements to support my liver, kidneys, my whole body. He also informed me as gently as he could that Prednisone, the steroids I'd been prescribed, are contra-indicated when the Lyme bacteria is underlying. I must have seemed to him like the walking zombie that I felt like. Looking back, I wonder if he ever thought that I was too late as well.
As it turned out, I was not "too late." I was at the wrong doctor. An ignorant doctor -- one who needs to be educated about Lyme and doesn't even know it. I got better. Lyme symptoms are still a part of my life, and I still watch my health like a hawk. It has been a lot of work, but I'm stubborn and lucky and willing to work hard. I have no doubt that today I'd be very ill, confined to a wheelchair and on permanent disability, if I had listened to that ID doctor. Instead, every day is a miracle. I've achieved some of my wildest dreams, and I share my life with friends and family who are more precious than gold.
Now, of course, I also realize that my story is unfortunately not unusual among people with Lyme.
People who get better, even if it's only 90% better, often turn their heads and never look back. Who can blame them? But I don't want to forget. If it could happen to me, it could happen to anyone I love, my brilliant nieces and nephews, my mother, my life partner, my favorite teachers. More people need to be educated about Lyme, and controversies over what to call it -- whether it's chronic Lyme disease (CDL), or Post Lyme Disease Syndrome (PLDS), stand in the way of the badly-needed education about Lyme. Stephanie, whom I interviewed last week for the LDRD Success Stories series, mentioned she had just completed her degree as a registered nurse one month before she discovered she had Lyme. In her years in medical school, not one course instructor had even mentioned it.
I hope that as more doctors are educated, more will recognize that Lyme is a multi-stage disease, like syphilis (over which there is no controversy), and the controversy over late-stage or chronic Lyme disease will fade. By whatever name you call it.
The scariest thing, the thing that blew my mind was that the infectious disease doctor I turned to for help REFUSED to treat me for Lyme. I had tested positive, yet she stood there shaking her head, insisting that I must have MS instead. She basically blew off the positive Western Blot and ELISA tests.
The doctor breezily observed my skin rash, which had become so severe that I had developed a staph infection that put me in ER, and told me, "You are too late."
Huh? I couldn't think very clearly because of the brain fog, but this response just sounded utterly wrong to me. I was speechless.
She then dashed off a prescription for corticosteroids, which she said was my last hope. I took them, and the Lyme bacteria multiplied rapidly. Needless to say, my condition went from bad to worse.
I was in terrible shape when I staggered up to the window in her clinic and requested my medical files. My legs could barely hold me, and my hands and voice were just as shaky and weak. I had begun seeing a naturopath who advised me to retrieve my records from the ID doctor's office and take them with me. He treated me for Lyme with antibiotics and a host of supplements to support my liver, kidneys, my whole body. He also informed me as gently as he could that Prednisone, the steroids I'd been prescribed, are contra-indicated when the Lyme bacteria is underlying. I must have seemed to him like the walking zombie that I felt like. Looking back, I wonder if he ever thought that I was too late as well.
As it turned out, I was not "too late." I was at the wrong doctor. An ignorant doctor -- one who needs to be educated about Lyme and doesn't even know it. I got better. Lyme symptoms are still a part of my life, and I still watch my health like a hawk. It has been a lot of work, but I'm stubborn and lucky and willing to work hard. I have no doubt that today I'd be very ill, confined to a wheelchair and on permanent disability, if I had listened to that ID doctor. Instead, every day is a miracle. I've achieved some of my wildest dreams, and I share my life with friends and family who are more precious than gold.
Now, of course, I also realize that my story is unfortunately not unusual among people with Lyme.
People who get better, even if it's only 90% better, often turn their heads and never look back. Who can blame them? But I don't want to forget. If it could happen to me, it could happen to anyone I love, my brilliant nieces and nephews, my mother, my life partner, my favorite teachers. More people need to be educated about Lyme, and controversies over what to call it -- whether it's chronic Lyme disease (CDL), or Post Lyme Disease Syndrome (PLDS), stand in the way of the badly-needed education about Lyme. Stephanie, whom I interviewed last week for the LDRD Success Stories series, mentioned she had just completed her degree as a registered nurse one month before she discovered she had Lyme. In her years in medical school, not one course instructor had even mentioned it.
I hope that as more doctors are educated, more will recognize that Lyme is a multi-stage disease, like syphilis (over which there is no controversy), and the controversy over late-stage or chronic Lyme disease will fade. By whatever name you call it.
$25,000 for Lyme research
09/11/08 16:51
I'm pleased to pass along a bright spot of news for chronic Lyme disease sufferers. According to an article in today's MarketWatch, researchers at a biotechnology company were gifted by an anonymous donor with $25,000 towards a new study to try to unlock the mystery of Lyme disease. Why do antibiotics only cure some cases of Lyme?
Researchers at Viral Genetics, Inc., are hoping to answer that question and more.
The article continues:
Research on chronic Lyme Disease, including symptoms related to the central nervous system and arthritis, has generated inconclusive and controversial results. Some researchers contend Lyme is driven by chronic infection and recommend patients be treated with antibiotics for the long term. Others support the hypothesis that the disease is the result of autoimmune T-cell activation that occurs subsequent to the initial infection or after the infection has cleared.
"Our hopes are that the information acquired from this very important study, may act as a bridge between those who contend that Lyme Disease is an active chronic infection and those who feel it is an autoimmune trigger. The answer to this question is of great importance for all those suffering in the Lyme community. Only through this information can we begin to formulate more successful treatment regimens for the chronically ill," said Dr. Steven Harris, co-investigator, Associate Professor Stanford University.
Researchers at Viral Genetics, Inc., are hoping to answer that question and more.
The article continues:
Research on chronic Lyme Disease, including symptoms related to the central nervous system and arthritis, has generated inconclusive and controversial results. Some researchers contend Lyme is driven by chronic infection and recommend patients be treated with antibiotics for the long term. Others support the hypothesis that the disease is the result of autoimmune T-cell activation that occurs subsequent to the initial infection or after the infection has cleared.
"Our hopes are that the information acquired from this very important study, may act as a bridge between those who contend that Lyme Disease is an active chronic infection and those who feel it is an autoimmune trigger. The answer to this question is of great importance for all those suffering in the Lyme community. Only through this information can we begin to formulate more successful treatment regimens for the chronically ill," said Dr. Steven Harris, co-investigator, Associate Professor Stanford University.
Chronic Lyme Disease
09/05/08 16:49
Chronic Lyme disease is controversial. It is what appears to affect those of us who still suffer from Lyme symptoms after finishing a standard IDSA recommended dosage of antibiotics. In some cases, chronic Lyme manifests in Lyme patients who received antibiotics for treatment, but weren't given a strong enough dose for a long enough time.
Some Lyme symptoms seem almost livable. Tinnitus, for example. Talking from personal experience only, I can live with it. This is not to say that I like it. On the contrary. I'm a classically trained musician, peculiarly sensitive to noise. You know those people who wince at the out-of-tune piano at the community concert? That would be me. I'm not exactly proud of that, just sayin'. So, losing my hearing partially to tinnitus has really sliced into my enjoyment of natural sounds. The tinnitus might go away some day. For now, it sure seems chronic. There are metallic crickets playing at varying volumes inside my head, 24/7.
Other chronic Lyme symptoms are far more serious. For example, medical evidence suggests that rheumatoid arthritis is one result of untreated, or undertreated Lyme disease. As many as 60% of people with untreated Lyme may develop chronic arthritis.
Central nervous problems, such as facial paralysis and meningitis are said to occur in 10 to 20% of people who are undertreated or never treated for Lyme.
Heart symptoms occur in a small percentage of Lyme patients. A jumpy, pounding irregular heart can vary the gamut from being not at all bothersome, to very scary. The jumpiness can occur either because of an infection in the heart, or an electrical conduction that requires the patient have a pacemaker implanted.
Chronic Lyme is controversial because doctors don't all agree that these long-term symptoms of Lyme are indeed still considered Lyme. Whatever you call them, they need to be tended to.
Some Lyme symptoms seem almost livable. Tinnitus, for example. Talking from personal experience only, I can live with it. This is not to say that I like it. On the contrary. I'm a classically trained musician, peculiarly sensitive to noise. You know those people who wince at the out-of-tune piano at the community concert? That would be me. I'm not exactly proud of that, just sayin'. So, losing my hearing partially to tinnitus has really sliced into my enjoyment of natural sounds. The tinnitus might go away some day. For now, it sure seems chronic. There are metallic crickets playing at varying volumes inside my head, 24/7.
Other chronic Lyme symptoms are far more serious. For example, medical evidence suggests that rheumatoid arthritis is one result of untreated, or undertreated Lyme disease. As many as 60% of people with untreated Lyme may develop chronic arthritis.
Central nervous problems, such as facial paralysis and meningitis are said to occur in 10 to 20% of people who are undertreated or never treated for Lyme.
Heart symptoms occur in a small percentage of Lyme patients. A jumpy, pounding irregular heart can vary the gamut from being not at all bothersome, to very scary. The jumpiness can occur either because of an infection in the heart, or an electrical conduction that requires the patient have a pacemaker implanted.
Chronic Lyme is controversial because doctors don't all agree that these long-term symptoms of Lyme are indeed still considered Lyme. Whatever you call them, they need to be tended to.