Lyme docs OK'd to treat with long-term antibiotics
It's Monday, and I've got good news. Let's all acknowledge this nod of compassion in Lyme disease treatment and send thank you notes in support of this decision made by the governor of Connecticut.
The following is an excerpt of a June 21, 2009 article by Jack Sanders in the Ridgefield Press.com:
Governor M. Jodi Rell said Sunday she has signed a bill allowing doctors to prescribe long-term antibiotics in the treatment of persistent Lyme disease – outside of standard guidelines – without fear of sanctions from state health regulators if the patient’s clinical diagnosis of the tick-borne disease and treatment have been documented by a licensed physician.
“Doctors in Connecticut – the absolute epicenter of Lyme disease – can continue to do what is best for their patients suffering from this complex illness. I think most people know someone who has been infected,” Governor Rell said. “The bill also recognizes that Lyme disease patients must have the freedom to choose which remedy or regimen best meets their needs.”
House Bill 6200, which gained broad bipartisan support in the Legislature, was prompted by an ongoing debate in the medical community. Some health organizations have questioned the existence of chronic Lyme disease and the Infectious Diseases Society of America (IDSA) has cautioned against the long-term use of antibiotics. Some physicians were hesitant to treat patients outside the IDSA guidelines because of potential reprimands from medical boards and insurance companies.
“Doctors will have the right to use treatment guidelines based on their clinical experience and best medical judgment,” Governor Rell said. “This bill does not, however, shield any physician who provides substandard care.”
MSNBC prints story of Lyme suicide
I know I'm not the only one of us who was moved (to tears) also by the overwhelming number of intense responses to the story. Among them was a statement by Pat Smith, reminding readers that children are at the greatest risk for Lyme, and that a valuable bill in support of Lyme disease research is still mired in political muck. Here is a partial quote of her comment:
"Another Congressman, Christopher Smith (NJ), who introduced the bill, HR 1179, said last year on the floor of the House, regarding Lyme disease, there is a "cover-up.” We echo that 1000 times over. MSNBC, I hope you will put all the power and resources you possess behind exposing that cover-up soon, as children ages 5-9 and 10-14 are at the greatest risk of acquiring Lyme disease, and the prevailing attitude is allowing government agencies to remove children from mothers who are having them treated with ANTIBIOTICS for Lyme disease by LICENSED physicians.
Meanwhile, our heartfelt sympathy goes out to the Baiata family. Many of us have experienced preventable suffering and tragedy due to this disease. However, the tragedy is usually not due to Lyme disease itself but to politics, cover-up, vested interests, and bias, often a much bigger threat than the Borrelia burgdorferi organism causing Lyme disease, which we could overcome if the cover-up were exposed fully in the light of day."
- Quoted from MSNBC.com article by John Baiata, All she lost: My sister's battle with Lyme disease, from a comment made by Pat Smith, President, Lyme Disease Association
Anti-inflammatory diet can help
It's difficult to eliminate the borrelia bacteria, so inflammation results, causing pain and wrecking all sorts of other havoc. On top of that, we must deal with the psychological or physical stress caused by the pain. And aside from the toxins that accompany and make up the borrelia bacterial complex, dealing with environmental toxins is generally a daily effort.
Antibiotics and herbal protocols are excellent help, but what else can be done about inflammation? This is where some people with chronic illnesses turn a critical eye on their diet and nutrition. And many claim that an anti-inflammatory diet can be a huge help in maximizing their healing protocols and helping to alleviate the intensity of Lyme symptoms and flaring herxes.
So, you're starting to feel a little normal after such a long fight with Lyme. Don't surrender to that deep dish cheese pizza! (Of course, a little treat now and then does the body good.) Steam delicious veggies instead, such as Swiss chard, kale, or mustard greens. Fix organic brown rice or rice noodles to go with them. If you can tolerate it, a bite of organic dark chocolate can make a yummy dessert.
Watch this blog for interviews with nutritionists and herbalists who work with Lyme patients, and delectable recipes for an anti-inflammatory diet. Remember, you don't have to change the way you eat forever -- you just have to give your body a break for a while, so your immune system response can strengthen. Eliminating foods made with wheat and dairy -- or at least, limiting them -- may boost your energy and reduce inflammation and pain.
Expert Interview Series: Carol Fisch Part 2
A simple explanation of Lyme disease in not possible, as Lyme is not a simple disease. It is not just an infection with Borrelia burgdorferi the causative agent of Lyme disease. We are dealing with an illness complicated by multiple infectious agents; many of them are immune suppressive.
The immune system has difficulty in detecting the organisms that cause Lyme due to multiple factors, not least of all, its ability to change shape in order to survive -- surely one of its best tricks.
From the moment the Borrelia burgdorferi complex enters the body, it has the ability to clock itself into our own DNA proteins. When hit by anything threatening its survival, it can go into cell wall deficient (CWD) stages or into the cyst stage, where it is protected from antibiotics and the immune system. An activated immune system, where the body is trying to find an enemy and can't, leads to reactivation of Herpes Virus 1 - 6, and auto immune issues.
Immune system support
One thing that I've learned from my own experience, as well as from talking to Lyme specialists and others who are healing, is that when you take antibiotics you must replace the friendly bacterial flora in your gut. Otherwise, "you can cause problems for yourself that are just as harmful as the Lyme symptoms themselves," says cardiologist and Lyme researcher Dr. Lee Cowden, whose herbal protocol for Lyme disease has helped many people. Even long after you stop taking antibiotics, probiotics can assist in bringing balance to your intestines. The intestines play a central role in the human immune system, and getting better is in many ways dependent on supporting the immune system.
So I want to mention something else I also take daily, a lactobacillus-based supplement that supports my immune system. I take 2 to 4 capsules daily, more if I feel stressed. It's called Del Immune V. A friend of mine sent me some when I first got diagnosed and I haven't been without it since. She takes it religiously too, as part of her protocol for hepatitis C. I have seen its effect on her, and the stuff is good. It seems to banish dark circles under her eyes, and best of all it seems to help lift her back to her natural wise, warm and witty self.
Although I haven't taken pharmaceutical antibiotics for two years, I've continued to take this high quality probiotic from Bulgaria. Although I may run out of other supplements and let them slide from time to time, I try to never go without Del Immune. It's made from a strain of lactic acid bacteria -- lactobacillus -- more precisely known as Lactobacillus rhamnosus, DV strain. The lactobacillus is cultured, then digested with natural enzymes that are an exact match to the enzymes in the human intestine, creating a product that is made of cell wall fragments containing pieces of cell DNA.
No silver bullets, but smart choices. Like eating organic and treating your tummy, and your immune system, with care.
Stephen Buhner's DIY massage oil
Stephen's book Healing Lyme, is much appreciated by many Lyme patients who can't tolerate antibiotics, or who suffer from chronic Lyme disease, have already reached their limit with standard Lyme treatment, or are simply looking for an alternative to Western medicine. He's a wonderful ally to have as we journey through our various healing paths. These are Stephen's recent books:
The Secret Teachings of Plants:
The Intelligence of the Heart in the Direct Perception of Nature
(Bear and Company, 2004)
Healing Lyme: Natural Healing and Prevention of Lyme Borrelosis and its related Co-infections
(Raven Press, June 2005)
Stephen Harrod Buhner's Arthritis massage oil formula:
Use essential oils and a carrier oil. Stephen says he normally uses olive oil as a carrier, though a lot of people prefer jojoba, which is lighter and less fragrant. The amount of essential oil used in the mix can be adjusted up or down depending on personal preference.
1) 8 ounces olive oil (or jojoba oil)
2) 1/4 tsp each of the following essential oils: juniper, lavender, rosemary, eucalyptus, German or Roman chamomile. (Alternatively, you can use peppermint, ginger, thyme, geranium)
3) Mix well.
4) Put into glass bottle, keep protected from sunlight.
5) When needed just pour a bit into the hand and massage into the affected area.
6) Let it work, takes a little while for it to penetrate the tissues.
7) Do not take internally.
8) Do not get on sensitive areas - i.e. eyes, reproductive organs, etc. or any areas of abraded skin.
Stephen Buhner's website is called Gaian Studies. He's featured in our experts interview series, talking about the challenges to Lyme diagnosis and treatment, and discussing his herbal approach to healing. Join here to listen.
$25,000 for Lyme research
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
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.
Lyme disease in dogs
Lyme is endemic in the northeastern US, and increasing incidences of the illness are being reported in northern California and the Pacific northwest. Dogs living in other parts of the country may be at less of a risk for exposure. But before you allow yourself to believe your dog is out of the woods (so to speak), bear in mind that Lyme infection has been reported in every state.
Lyme in dogs manifests differently than in humans. When bitten by an infected tick, 30 - 50% of people will develop a skin rash and flu-like symptoms. However, dogs are not likely to develop symptoms for many weeks or months. Your dog might exhibit signs of arthritis from painful joint inflammation, or he might run a fever. Your veterinarian can prescribe a course of antibiotics such as doxycycline or Amoxicillin, which many dogs respond well to. As in humans, all the bacteria may not be killed with this course. Long term or chronic Lyme may or may not be a problem for our beloved buddies.
- According to an article by Wendy C. Brooks, DVM, DipABVP Educational Director of VeterinaryPartner.com, dogs do not tend to develop neurologic or heart issues.
- However, kidney disease may occur in response to stimulation by latent pathogens over a long period of time.
Preventing Lyme infection might be possible with the use of powerful tick repellents and collars. However, even if you use these agents you should take the time to check your dog daily for ticks whenever you think there has been exposure. There is no hard evidence to prove that a tick must be attached for 48 hours before it can spew its Lyme bacteria into the animal on which it's feeding. If the tick is disturbed while feeding, it may dump its toxins into the bloodstream of the host animal.
- If you find a tick on your pet, grasp the tick firmly but gently with a tweezers and pull it straight out without twisting or turning it.
- Never suffocate the tick by putting anything on it, such as Vaseline or soap. Doing so may cause it to unload its bacteria before you remove it.
The bad news is that diagnosing Lyme disease in dogs is as tricky as it is for humans. Spirochetes are notorious for being able to hide masterfully from the host's immune system. Therefore, detecting antibodies to the Lyme bacteria is nearly impossible. If you and your vet suspect that your furry buddy might have Lyme, the good news is that a 2 - 4 week course of antibiotics should bring your pet relief from symptoms quickly, within 48 hours.
Waiting room - Lyme story
"I got a rash all over my chest," he said to no one in particular. "They gave me the wrong blood pressure medicine," he continued. "Can you believe that? I can't sleep, it itches so bad." He went on explaining the details of his story and the painful rash, eventually reaching up as if to unbutton his shirt to prove it. I buried my nose in my magazine. The man stopped, looked around to see if anyone was listening. No one was. He leaned toward me. "What's wrong with you?" he said. "You don't look sick."
My long skirt hid the white gauze bandages wrapped around both shins from ankle to knee. Beneath the gauze, the skin on my legs was hamburger from a mysterious rash that had been getting worse over the course of the past eight months. I'd been practically living on an alkaline diet, including lunches of delectable dandelion greens, and downing numerous turmeric capsules, since a holistic doctor had told me that I had eczema. I didn't drink, smoke, and I could count on one hand the times I'd taken antibiotics in my entire lifetime. I wasn't the type to get eczema, and that diagnosis had taken me by surprise. Even so, I religiously followed the doctor's suggestions. Still, I'd had no luck with the nasty rash. When the pain became so vicious that I could no longer even walk, my boyfriend drove me to the ER. Before walking into the waiting room, I'd spent the weekend on IV antibiotics. The ER docs informed us that I had almost died from a staph infection on the verge of going septic.
The man may not have noticed the cane leaning next to my purse. I smiled weakly. "I don't know," I shrugged. He narrowed his eyes, as if I was withholding something he deserved to know. Then he nodded and sat back.
My heart leaped at odd intervals, like a fish jumping in a shallow stream, making it hard to catch a deep breath. The one fan circulating in the room didn't do much to relieve the stuffiness. The dull headache I'd had for a week seemed worse under the florescent lights and the blaring TV high on the wall. An attendant in a green tunic appeared from the hallway and glanced at her clipboard. When she called my name, I stood and steadied myself with the cane and proceeded to walk as well as I could toward the hall. Vertigo gripped me, making me lose my balance. I almost bumped into the knees of the man with the rash. "M.S.," he muttered.
I stepped on the scale in the hall. The attendant adjusted it and recorded my weight. In the doctor's office, she took my blood pressure, handed me a hospital gown and left the room. I sat on the stainless steel table under the glare of the florescent lights, and waited again. So this is what public health care looks like, I thought. What was wrong with me? I had always been healthy, was always the one to choose carrot sticks over potato chips. On top of that, I was happily in love, and even starting a new business. In a million-zillion years, I never dreamed I'd be in this position. But here I was, in a small California coastal town, in the middle of my life, in such a weakened state that I could barely recognize the thoughts swimming through the thick fog that had descended in my brain.
Lyme Disease Mistaken for MS
Getting a correct diagnosis for Lyme disease is a significant step toward getting treatment, yet countless patients are misdiagnosed from the start. Here is a recent account of a North Carolina man who self-diagnosed, after having been put on medication for multiple sclerosis. The article below is from the Raleigh Newsobserver.com, February 19, 2008.
Patients push boundaries of Lyme disease debate.
Two factions hold opposing views on prevalence of tick-borne disease.
Jean P. Fisher, Staff Writer
Even as mounting evidence suggests the state may harbor more tick-borne illness than records indicate, patients with symptoms that match Lyme disease say doctors continue to turn deaf ears to their complaints. They say people are needlessly going untreated or misdiagnosed, leading to advanced illness and even disability. Read more about lyme disease diagnosis.
Dave Tierney of Cary thinks that's what happened to him. Plagued with unexplained fatigue, muscle aches, eye pain and other problems for years, Tierney was diagnosed with multiple sclerosis last year. In June, he left his job as a pilot with Delta Air Lines and began getting long-term disability benefits.
But after researching his symptoms on the Internet, Tierney became convinced he had chronic Lyme disease. An infectious disease doctor and a specialized laboratory test confirmed it. After three months of intravenous antibiotics, Tierney finds his Lyme symptoms much improved and he is back at the controls of an airplane.
"I could have been on MS medicine for the rest of my life," said Tierney, who returned to work this month.
read the entire article here