LYME STORIES: Steve Cabana (Martha’s Vineyard)

Submitted at US Senator Blumenthal’s request for sharing personal experiences …

At my summer home on Marthas Vineyard in June of 2009, I found two engorged deer ticks at the foot of my bed. The next three nights I woke up drenched with sweat. I chose to ignore it. In September of 09, I went for my normal four mile run, and started to have sudden severe pain in my right knee and left hip. It didn’t go away. Fortunately, a friend with Lyme, pointed me to a Naturopathic doctor in Bedford, New Hampshire. He sent my blood work to IGENX, the most accurate testing lab for lyme in the opinion of the majority of patients who recovered their health, who I have questioned.

I took Doxycycline for four months, then Amoxicillin for four months. I was symptom free from May 2010 until mid-November of 2010, when I had a sudden stabbing pain in my right shoulder (lyme eats collagen in one’s joints) like a hot branding iron was thrust against my skin. I went to a Nutritionist in North Andover, MA who worked with a lyme literate doctor. I was put on a yeast free, sugar free, gluten and alcohol free diet to calm down the infection. Then I was given countless supplements to take, and a pulsed antibiotic treatment of flagyl and zithromax which was only for four weeks. Thereafter, for four months I seemed to be symptom free and the pain was gone. Then I started to get some of the neurological symptoms common with lyme, as well as a return of chronic fatigue, which made it hard to work as a consultant to corporations.

I had lost my faith in antibiotics at this point, and did feel the diet was helping me keep things from getting out of hand. I contacted Dr. Zhang in New York City, at the suggestion of Dr. Andrew Weil. Dr. Zhang has developed a herbal approach to Lyme using allicin, artemesia, and other agents to control the auto-immunity aspect of the disease, to improve circulation and to cross the blood brain barrier to kill the pathogen. I have followed his recommendations for five months, and again feel mostly normal. Dr. Zhang says about 60% of his patients report a 100% recovery one year after treatment, and 20% have no improvement.

This is a difficult illness to address once it has become chronic, and it is more than annoying that many conventional, and in my opinion, un-educated physicians, needless cause suffering by refusing or inadequately treating people in the early stages of the dis-ease. For example, this June, my friend, a real estate developer in Newton, MA, and quite athletic individual visited me on the island, and went out in the woods on my mountain bike. He called two weeks latter saying, “Steve, something horrible is happening, I have pain in my joints (knees, hip), terrible headaches, can’t sleep, anxious as hell, my whole body aches, and I’ve got crippling fatigue.”

I said, “Dave, those are the symptoms of Lyme disease, right out of the book. Go see the doctor, get a prescription for 6 – 8 weeks of Doxycycline, at 200mg every 12 hours, that is what a knowledgeable source told me would give the highest odds of beating this early on.” So, he went to his doctor at the Newton, Wellesley hospital. They told him, no bulls eye rash, no tick, it wasn’t likely Lyme and they wanted to do a test, which I knew had a lot of false positives. Go back there, I said, see a different doctor, forget the test, get on the antibiotic right away. He did convince the next doctor, based on symptoms to give him, 100mg Doxycycline, every 12 hours and gave him a couple weeks supply. That’s not enough, I said, you need to hit it hard right now, so you kill it early. Okay, he said, and went to see the doctor again, who gave him another small amount. So, I called a friend, with Lyme, who shared some of his doxycycline, so he could take it for eight weeks, at 200 mg every 12 hours. Now he is fully recovered with no symptoms, and back to his gregarious, athletic self. How many people are becoming chronic lyme sufferers (I know, infectious disease doc’s say it doesn’t exist, they are wrong) because doctors are not handling the early cases appropriately?

By the way, I prepared manuals for all the libraries on Marthas Vineyard titled, “Ticks,” “WBUR Lyme Disease National Public Radio Series,” and “Lyme Literate Doctor Chronic Lyme Disease Recovery Protocols,” and I have spoken at most of the Lyme Disease support groups in Massachusetts on how to beat the disease, and heard many sad, frustrating stories about people’s experience with the current medical environment. In my opinion, for the great majority of people, whose condition is not caught and treated early, we are in a similar state of understanding, as we were at the dawn of the AIDS crisis. Hopefully, things will improve soon.

I sincerely hope these comments are helpful to you in your efforts to benefit the citizens of CT and beyond.

Steven Cabana

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