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Chronic Fatigue Syndrome

Video games and art as therapy


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Start where you are. Fight chronic inflammation.

Lyme disease is a thief. Chronic lyme disease symptoms can go on affecting a person’s life for many years. Given the complexity of receiving a correct diagnosis, a person with an undetected, underlying Lyme infection may instead be labeled with RA, fibromyalgia, Chronic Fatigue Syndrome, MS, ALS, or almost anything from a truckload of other conditions.

Meantime, life goes on. Friends and siblings get jobs, travel, go to grad school, fall in love. They get married, have babies, and not in any particular order. But for the person with Lyme those fundamental pathways, common fruits of life we for granted, may simply not be an option. Lyme has stolen years.

But enough of spilled tears, right? The wisest thing anyone can do is to start where you are. If you’ve had it with chronic lyme disease symptoms, take heart. Many others have been in your shoes. And they’ve gotten through it. Regardless of the time and opportunities missed because of Lyme, there are many people living happy, loving, productive lives again.

Exactly how the stealthy
Lyme bacterial complex works is still under scrutiny. Scientists and doctors, some who are also personally infected with Lyme disease, such as Dr. Eva Sapi and  veterinarian, Lyme and immunology expert Dr. Scott Taylor, toil to understand and find a cure for Lyme. One thing we know for certain is that Lyme is an inflammatory disease, and chronic inflammation is the root cause of many life threatening conditions, including Lyme.

Cortico-steroids are commonly given to Lyme patients by doctors without any knowledge or clinical experience in
diagnosing chronic Lyme disease symptoms. The faulty logic goes something like this: the patient is experiencing distress, inflammation is causing the distress, steroids (usually Prednisone) will reduce the inflammation and thus reduce the patient’s distress. Not! Predinose will supress the patient’s immune system, causing it to tolerate the Borrelia bacteria instead of attacking and killing it. The Lyme infection is almost guaranteed to get worse, not better.

What can be done about chronic inflammation? Are there safe prescription drugs available, and does your LLMD know about them? What about natural alternatives? Aside from fish oil, are there other products we can take to reduce this silent killer? Does physical exercise really help people dealing with chronic inflammation? Or can it hurt? In my next post, we’ll delve into the various ways to treat chronic inflammation.


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Link between Chronic Lyme and CFIDS

Even well into my so-called ‘normal’ post-Lyme life, there are days, such as this, when regular routine tasks -- preparing and cleaning up after a meal, writing an email, grocery shopping, seem unbearably exhausting. Friends I confide in say they have the same feelings and that it comes and goes. We attribute this to a variety of causes, hormones, diet, children, our jobs and just plain ol’ getting older. Illness is also suspect, especially for those of us who have battled with fatigue due to Chronic Lyme (aka neurologic post-Lyme), and/or the syndrome we call Chronic fatigue.

More studies are needed to examine the relationship between these two potentially devastating diseases. A dear friend and neighbor of mine, an aging Southern writer appeared astonishingly frail and weak, but whose wicked sense of humor never rested, died last year after struggling for many years with CFIDS. In spite of her failing health it always seemed that her role in our friendship was to make me laugh. She succeeded. Mine was to give her news about the steps being taken to find a cure to what ailed us. If I could get her updated address, I’d email this article to her this morning:

Possible links between Chronic Lyme and Chronic Fatigue Syndrome, are under scrutiny of experts including Steven E Schutzer, MD, and Brian Fallon, MD, the Director of the Lyme and Tick-Borne Diseases Research Center at Columbia University.  

Scientists have discovered proteins in spinal fluid that can distinguish people with two mysterious illnesses that mimic each other — chronic fatigue syndrome and a kind of chronic Lyme disease.

Wednesday's study is small and needs verification. But specialists called it a promising start at clearing some of the confusion surrounding two illnesses with similar symptoms and no good means of diagnosis.

"It's a very important first step," said Dr. Suzanne Vernon of the Chronic Fatigue and Immune Dysfunction Syndrome Association of America.

Lyme disease usually is cured with antibiotics, but some patients report pain, fatigue and memory or other neurologic problems that linger for months or years after treatment ends. This post-treatment Lyme disease shares symptoms that characterize chronic fatigue syndrome.

The new study analyzed spinal fluid from 25 of those chronic Lyme patients, 43 people diagnosed with chronic fatigue syndrome and 11 healthy people. Using a special high-powered technology, researchers detected more than 2,500 proteins in each group.

Read the abstract of the study here.

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Expert Interview Series: Carol Fisch

Carol Fisch is Adjunct Professor Emeritus of Laboratory Science. She is also a stealth pathogens researcher, teacher, and, as she also suffers from Lyme disease, an advocate and activist for those suffering from stealth pathogens and neuroendocrine disorders. In her outreach education, she explores the possibility that people with a diagnosis of Fibromyalgia and Chronic Fatigue Syndrome are dealing with a bacterial complex that also causes Lyme disease, among other illnesses.

"Most medical professionals, when speaking of Lyme disease, are typically referring to an outdated and over-simplified version of the disease that was once taught and believed that the main causative agent being dealt with was the Borrelia spirochete. We now know there are many agents involved," explains Carol.

"Many patients given a CFIDS or Fibromyalgia diagnosis, or a Gulf War Syndrome or Neuroborreliosis Complex (Lyme disease) diagnosis, are dealing not only with a spirochetal disease that causes multiple damage to the host but a very complex organism that causes multiple damage to the host. It is indeed a very complex organism within itself. Borrelia burgdorferi is one of the players in Neuroborreloiosis Complex."

Carol says she would like to see the medical community work more harmoniously together in an effort to find answers to the complicated challenges of these illnesses. She is hopeful that such unity is possible and imminent. As she says, "we have a long way to go but in working together hopefully we can come up with answers that help all of us to live healthier and more productive lives."

Carol's experience includes having been a medical laboratory advisor for tick borne illness testing. She is well-versed in microbiology, immunology and parasitology and has an excellent understanding of Cell Wall Deficient Organisms (CWD). I spoke with Carol about the significance of her work and research on Dec 11, 2008.

Members can log in and listen to the interview.
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Treatment of Lyme and CFS with Samento

Medical research reveals Lyme disease and Chronic Fatigue Syndrome to share not only similar symptoms, but in some cases identical gene expression as well. In my conversation with Dr. Andrew Wright of the UK, he said he thinks that CFS is caused by a bacterial infection, and in many cases it seems to be the same bacteria, Borrelia, that is at the root of Lyme disease. He discussed the success of Samento, his preferred treatment of both illnesses, and his desire for more medical studies to be conducted on the long-term treatment of Lyme and CFS with herbal antimicrobials. As Samento has no effects, is safe and more well-tolerated than antibiotics, he says it's his first choice for treatment. Read more here.
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On the horns of an abx dilemma.

We know that antibiotics do help Lyme patients heal, although doctors have observed that abx do their best work when people start taking them soon after becoming infected. Many docs are advocating for the use of long-term abx in the case of chronic Lyme. They feel there is no other way to deal with it. No question, antibiotics are the modern miracle medicine, an irrefutable symbol of civilization. But the medical truth is, long-term antibiotics may do more harm than good.

If you're one of those people who never experienced Lyme disease symptoms until the stress of a life-changing event set it off, you may have been given abx long after you caught the bug. Are your chances of healing from Lyme now reduced? What are the alternatives to abx, and why should we give them a chance?

Read entire article here.
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