My Post to the Katie Couric show

At the end of the Catie Couric show yesterday afternoon (Oct 9, 2013), she invited anyone interested to 'keep the conversation going' by going to her site and telling our stories, etc. Here's what I sent in. So far I can't find it listed among the more than 1200 comments that are rolling in. Perhaps it was too long, so I'll post it here for anyone who's interested in reading it...

Dear Katie,

Thank you so much for covering this difficult topic on your show, and being so genteel yet also bringing both sides of the controversy together so adeptly.  You and your staff chose your guests well.

I want to share with you my story, and a few opinions after dealing with Lyme issues for a decade.

I grew up in eastern Pennsylvania, and often worked and played in the woods. Woods and deer surrounded our house. I worked as a surveyor's apprentice and for a tree surgeon as summer jobs. Thus, it was not uncommon to have ticks on me after a day's work. 

I am now 60 and live in California, where I have been since 1977. At ages 18, 30, and 50 I had major meltdowns. My symptoms were feelings of pressure in the neck and head, insomnia, depression, and anxiety, mostly. Age 50 was the worst. The other two events lasted 1-2 year, and eventually self-corrected.

But at age 50, I did not recover, and I was incredibly ill. My mind went haywire to the point where I had to go to psychotherapy every day for a month, at the outset, just to prevent me from committing suicide.



Prior to that,  I had been a very productive person, having authored 47 books some of which were best sellers in their category - computers. I had a typsetting company and a video production company. (You can look me up on Amazon to verify this.)

I've been diagnosed with late-stage, neurological Lyme disease and have been treated by no less than five LLMD's (Lyme Literate MD's) and three Parkison's doctors. Many other kinds of health workers as well, a list too long to write here. I have spent easily $100,000 of my own money, despite having Blue Shield health insurance PPO, because the doctors I work with are not in the health insurance networks, and for good reason: Those doctors believe that Chronic Lyme disease exists and should be treated, which costs the insurance companies more than they want to spend.

Luckily, I was a prudent saver, and so had a nest egg to borrow from. However, I've been unable to work for ten years now. Between the lack of work and my medical expenses, I have burned through much of my retirement savings. I will probably have to sell my house next.

I have tested positive for Lyme (CDC and NYS positive), as well as for several coinfections: Babesia, Ehrlichea, Protomyxzoa. We believe I do have Bartonella because I am symptomatic for it, although I tested negative for it.

My symptoms now are primarily joint pain,  insomnia, depression, anxiety, and tremor. Both legs and my right arm tremor uncontrollably. Walking is often difficult.

I have three Parkinson's doctors who are 'mainstream' and say this is just 'atypical idiopathic Parkinson's disease'. ('Atypical means it looks like PD but not completely. Idiopathic means 'We don't know where it comes from.') I do NOT have some key features of PD, such as facial masking, slowness of movement, dizziness, 'cogwheeling', but I DO have constipation, depression, and tremor. Tremor responds to Sinement. Because it does respond to Sinemet (dopamine, essentially), my PD docs say my tremor is not caused by infection such as Lyme.

I find this logic to be very suspect.  Science has found, for example, that toxic chemicals such as some pesticides can cause Parkinson's. I DO have a gene mutation called MTHFR that makes it difficult for my body to remove toxins such as pesticides, mercury, lead, and manganese from my body. Lyme infection (or any infection) could challenge the immune system enough that a tipping point is reached and the person's ability to fight off infection and/or remove environmental neurotoxins is severely reduced. The results of such a scenario would manifest differently for different patients, depending on the toxic loading, environment, diet, age, etc.

I believe in the scientific method, and have no issue with that. When AIDS showed up on the disease map, the medical establishment didn't want to deal with it. But people were dying. There was public outcry. I remember marching down Market Street in San Francisco in in the '80's in several of the large marches for HIV/AIDS advocacy. Eventually, through great effort and sacrifice of life (including some of my own friends), our health researchers realized this wasn't just a GAY disease, and we found the political will to do something about it. Now, thanks to all those who gave their blood, sweat, and tears to the cause, we have medications that dial back HIV/AIDS from a death sentence to at least something manageable.

I believe that Chronic Lyme disease exists and should be treated, which costs the insurance companies more than they want to spend. So, if the CDC is right, we have about 300,000 NEW cases every year in the US. That doesn't mean starting from today. It means going back many, many years. If 30,000 cases are reported, that leaves 270,000 per year that are not. Let's say we go back to about 1975. Lyme disease was first recognized in the United States in 1975 by Dr. Allen Steere. Let's be conservative and say on average, there were maybe only about 100,000 new cases per year in the US  (Again, I'm being generous here). From 1975 to 2013 is 38 years. That means that perhaps as many as 3,800,000 people are toting around Borellia spirochetes, being mis-diagnosed, slipping through the medical cracks. Alan McDonald, a Lyme researcher found Lyme bacteria in 7 of 10 Alzheimer's brain samples he garnered from the Harvard Medical School brain bank. Could it be that some of the neurodegenerative diseases with no known cause (PD, Alzheimer's, MS, ALS, MSA, among others) are somehow caused by Lyme infection?

Since I was a professional full-time writer,  I have used my writing skills as best I can, to advocate for those of us who are falling through the medical cracks. I have a Lyme+Parkinson's blog with over 400 scientific articles and my own story and regular updates about my treatment. (bobcowart.blogspot.com).

Finally, getting out of the theoretical and back to my suffering, I cannot begin to tell you the very challenging effects this disease and surrounding controversy has had on me. I gave it a whirl one night when sleep was eluding me, and posted it as a blog entry:

http://bobcowart.blogspot.com/2011/04/sleepless-in-berkeley.html

I can tell you that a dear friend of mine suffered Chronic Lyme for 10 years. She was completely debilitated. She spent 10 years in bed, without energy enough to even get out of that bed much of that time. She lost a decade of her life, most of her 30's.  After FIVE YEARS of IV antibiotics (Rocephin, which he had to pay out of pocket for), she studied for, and passed the CA bar exam.  She now bicycles all over town,  has become a lawyer in the state of CA, and has a full private practice, providing legal services for chronic disease patients. She is robust, just got married, and is leading a full, rewarding life. Without the IV antibiotics prescribed by her Lyme doctor (who is one of the same doctors I see), she would likely be dead (or at least very sick) today.

My recovery has not been as complete. I can type again. However, I did have to close my private psychotherapy practice and cannot write the 1000-page computer books anymore.

Some things have gotten better:  I used to have masked face which showed no emotion, miniature handwriting (micrographia), 'stuck foot', slow motion body (Bradykinesia), and walking with little, tiny steps, and could barely drive a car. All these are gone now.  Was it the antibiotics? Hard to say. With luck, and willingness of doctors to stop fighting each other, maybe we'll come up with something even better, that doesn't compromise the patient's body so much. I am much better than I was before starting my Lyme treatments, and I owe that all to my five LLMDs who were courageous and compassionate enough to fight the medical establishment and treat me. I have been inspired by their efforts and so I manage and co-host two Lyme support groups here in northern California, even though I am still sick.

To the first doctor on the show who kept referring to 'widely used tests' and who does not believe there is ongoing infection in anyone after 28 days of IV therapy with doxycycline, I say this: Please put your scientific hat on and read Dr. Horowitz's book. Read Pamela Weintraub's book (Cure Unknown). 

We know the ELISA test for Lyme has a huge rate of false negatives and positives. The two-tier system of testing the CDC uses is for surveillance purposes, not clinical diagnosis.  A recent study done on chimps  showed live Lyme spirochetes in the eyes of the chimp after 28 days of IV therapy. Apparently these bacteria are very clever and can not only change form to evade  the antibiotics, but also take refuge in safe havens where even IV antibiotics cannot penetrate. Serologic tests (of blood, urine, CSF) will not always reveal persistence of Bb (Borrelia burgdorferi), even if it is in the body.

Finally, the argument about creation of 'superbugs' is specious, or at least hypocritical. For decades, teenagers with acne have been put on antibiotics, long term. Diabetics do the same. Shall we stop giving them their medication?  If we want to slow down the development of antibiotic-reistant strains of bacteria such as staph, insist that livestock producers such as cattle farms stop giving EVERY cow on their farm antibiotics as a prophylactic measure. Please don't deny Lyme disease patients access to medicine that may give them back their lives.

The bottom line: This kind of controversy is what Science is all about. Science is a fantastic invention that allows for all kinds of theories, and is a pathway to truth. Science may, in fact, be the greatest achievement of human civilization. We no longer believe in 'spontaneous generation' of flies from meat. We don't hang women because someone claims they are witches. To the doctors on both sides of the chronic-Lyme argument, we patients say stop arguing, already. This is as inappropriate as what's going on in the halls of Congress right now. We patients are suffering, even dying, waiting for you to help us. Write the grants, find the budget to research and develop new, more accurate tests and treatments for Lyme and confections.  Be open-minded and work together. Look to the MJ Fox foundation for inspiration on how to do that. We need a cure!  We need prevention, too. So, sure, work on a vaccine too, if it's possible.

I've lost a decade of my life so far, from 50-60. I should be getting ready to enjoy my retirement, but instead I am sitting here typing this while my legs are shaking uncontrollably.  Please help me to enjoy 60-70, and hopefully with a roof over my head. Help the 300,000 potential new Lyme victims who will be infected in the next 365 days. Help the hundreds of thousands who are currently infected, are misdiagnosed (if diagnosed at all), and are still suffering.


Sincerely,
Robert Cowart
Berkeley, CA.
Lyme blog: bobcowart.blogspot.com