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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.


Following up with Samento & Banderol

A reader commented that he has tried Samento and Banderol and didn’t get results. Another reader mentioned that ‘diet is everything.’ I feel so strongly about this and want to put in another pitch for taking personal responsibility in our own healing. I wholeheartedly agree that Samento and Banderol alone won't cut it. I wonder if antibiotics alone can heal us, and personally doubt they can do it all (unless the Lyme disease is caught early enough). I believe that in order to be effective healing agents, antibiotics, as well as herbal and other complementary therapeutics, should be positioned as part of a whole approach. That approach includes diet and exercise and a host of other factors that I’ve written about in ‘100 Perspectives.

My own history of healing from Lyme seems similar to that of the person who responded, LymeAngl, although I followed the
r Cowden's updated Lyme protocol">Cowden protocol for four years (after treating for six months with powerful antibiotics), taking 30 drops 3x daily, alternating between Samento and Banderol.

LymeAngl’s point about diet being everything is critical in my opinion. I have had a healthy diet my entire life, but then went gonzo with healthy food, fresh organic juices daily, fresh sprouts and fresh dark green everything, such as spirulina, chlorella, and leafy greens when I learned I had Lyme. I maintained that frenzy of healthy food consumption long after my horrid symptoms and the ‘daily dizzies’ began to slowly fade. Today, 6 years after my diagnosis, I am a devotee of a clean diet and exercise and believe they are two very important branches of a healing path.

I have written here about slipping off the health food wagon, the results of which have been disastrous for me. Beer and wine don’t work. Sugar is the worst. Coffee I can handle very infrequently, but I stay healthy now because I pay close attention to my daily habits. I exercise MORE, not less, as I get older; I consume no sugar or alcohol, and I have never been a soda drinker. I drink more water than most people are probably able to (because I'm fortunate to work at home, near the loo). I hardly ever drink coffee but I do drink green tea. I don't have a sensitivity to gluten which is fortunate. My diet includes a fair amount of dairy but I stay away from cow milk, which has never worked for me. Goat cheeses, lots of herbs and spices, and as much fresh organic produce as I can swing. I read labels voraciously and have learned to attend pot lucks and dinner parties without caving in to peer pressure, while at the same time not devolving into a buzz-killing 'health food lecturer' about the evils of sugar. Everyone is aware of the dangers by now & they need to wake up and make their own choice. It does, however, never cease to amaze me how much actual junk food people can consume, all while fervently believing that their diet is perfectly healthy. I’m a people person, always have been, so people’s quirks and imperfections tickle me to no end, but sometimes it's just too surreal to witness how strong the disconnect can be between somebody’s words and their actions.

For example, the other day I sat and watched someone woof down a sugary maple scone and a cup of coffee with sugar & cream, while describing to me her newly found enthusiasm for ‘cleansing.’ When I pointed out that scones are probably not the best cleanse-food she pouted, saying she had to have SOME fun. Ridiculous. What's “fun” is living life the way you choose to every day, not strangling in the grip of your own unconscious habits, not being held prisoner by disease.

I'm convinced that the key to healing from serious disease is to approach it from as many angles as you can discover. Never give up.

Please read about my "100 Perspectives."