I just watched the segments on Lyme disease on the Dr. Phil show which aired today. I am happy to see him provide airtime to this insidious illness. Do I believe in chronic Lyme? That is like asking me if I believe in myself. I had my first bull’s-eye rash, a classic symptom of Lyme infection in 1969, which appeared on my wrist. I was scared at the time and hoped it would go away. It did.
Throughout grade school I suffered bouts of fatigue, difficulty concentration, memory issues, chronic sore throats and things like bronchitis, flus, and weird illnesses that were not always shared with my siblings. By high school I pretty much gave up hope of ever feeling like a normal person. However somehow my body managed to hang in there for a bunch of years until I was rebitten in 1992 after we moved to Elkhorn, Wisconsin. Months later I was in bed for a good 10 months while I struggled to raise 2 small children, and run a home-based business. I couldn’t do it and had to hire help to do my work…and to eat up any profits my business previously had. I soon closed the business and well, the rest of my story is told in a number of my books.
To look at my blood today, is to find co-infections and live spirochetes that are culturable under new laboratory tests out of Pennsylvania (Advance Laboratory Services http://www.advanced-lab.com/) in a staggeringly swift few days! My blood is now sitting in a Hungarian laboratory awaiting further study by another “mad” scientist who also believes that Lyme disease is a chronic condition in many patients — and guess what? His treatments are non-standard, he has been treating Lyme patients since the 1990s, and his research was blocked by mainstream, research-funded Lyme denialists, although he is curing patients.
Did I receive the “standard” antibiotic treatments that many patients receive? You betcha I did. And I also tried intramuscular, intravenous, longer-term treatments, herbals, acupuncture, energy medicines, diet therapy (which saved my life by going 100% organic by the way); and last but not least homeopathy and things like laser therapy and a few electronic gadgets that actually work. How do I know? Because after being treated by what I call the green laser “bug zapper”, my body produces histamines, I feel terrible, and by the next day my brain and body function is markedly improved.
Nearly 7 years ago to the day, I was so cognitively and physically affected by Lyme disease, that I had trouble pronouncing my children’s names, and I could not brush my hair or walk across the living room floor. High-dose antibiotics saved my life, but turned my liver quickly toxic because the treating physician did not do appropriate monitoring. That disaster aside, I improved over the next years through sheer willpower and going 100% organic in my diet. Somewhere along the way I developed serious “allergies” which are tied to the inability of my body to rid itself of toxins from heavy metals, mycotoxins, biotoxins, and toxins from the environment.
I am now using therapies that some infectious disease experts would say are “worthless” or “unproven”. I don’t need scientific literature by government-funded scientists using controlled studies that are inapplicable in the clinical environment. I just want my life back. I have been basically home-bound for the past 9 years due to problems with Lyme, complications, and my allergies.
At one time I was eating what I call the “Irish Potato Famine Diet”. That was I could only eat potatoes and water because everything that I ate caused a pseudo-anaphylactoid (anaphylaxis) reaction — this was caused by gut damage from Lyme and co-infections. That is a whole lot of fun. Imagine being poisoned, having a chemical dump inside your body, someone turning up the heat to 1,000 degrees (flushing), rapid heartbeat like you just ran around the block, difficulty breathing (as through a straw), body rigors with the shaking force of a 6.0 earthquake, a foul smell the likes of a garbage dumpster emanating from your mouth and armpits; followed by physical exhaustion and an urgent need to pee. That is anaphylaxis folks, and the only way to avoid it, is to avoid the triggers. In my case, that list of triggers is the length of my right arm. And I could not possibly have ever imagined I would have to eat and live the way I do.
Anyway back to the Dr. Phil show. While I have found some Lyme patients suffer (and I have suffered this) severe nerve pain and are forced to seek pain medications, the model on the segment was using whippets, which is nitrous oxide. I would not recommend this approach, but I understand how desperate and devastating is the nerve pain that can accompany Lyme disease. I have been in bed unable to move from the depth of pain that comes with inflamed nerves. And I have experienced the depth of ignorance from a myriad of doctors who deny that this illness exists. The denial aspect of Lyme is horrendous and emotionally devastating. And the attacks against our Lyme-treating physicians are unwarranted and equally devastating.
To read about the history of Lyme disease and the denial of a global epidemic, please read any of my books on Lyme disease. To watch the devastating truth about a chronic disease that many experts deny, including those who are paid million$ in federal research dollars to slow-play an infectious disease, watch the documentary film Under Our Skin (Open Eye Pictures), or watch the segment on Dr. Phil that highlights the plight of 3 Lyme patients whose infections are “all in their heads.” Yeah right. If you can come away from this show still believing that this illness is imaginary, then you have your head in the sand…
…and I would be the first to donate a pint of blood so whomever denies Lyme may have the distinct privilege of experiencing this illness for themselves….
…except that unlike some Lyme denialists, I would never intentionally infect anyone with this life-altering, family-robbing, globally devastating nightmare of an illness. But then I have a conscience and my research is funded out of my own pocket, even though I am on disability. My book royalties? Minimal and they pay for other people’s Lyme treatment, because despite my meager personal income each year, there are patients who have even less than I do.
I don’t have Lyme for “attention”, I have Lyme because I was bitten by blood-sucking ticks who know no borders, have no research interests, and do not discriminate between me, mice, monkeys, or the family dog. They don’t care that they are undetectable on so-called “reliable” diagnostic tests that are incapable of detecting them. They happily sequester in places in my body that are not my blood, where they modify my immune system and gut function to make themselves happily at home while they starve me to death.
At least those little blood suckers were kind enough to leave me with something after my visit with them, and they did it for free.