I have been researching Lyme disease for four and a half years. I have attended two Lyme disease conferences, and written two books on the subject. I have spoken to dozens of Lyme disease sufferers, and sadly, I have met few who consider themselves to be in remission, or even close to it.
Some of the most well-respected Lyme-Literate physicians who have treated thousands of patients don't believe that anybody ever completely gets rid of Lyme disease, and rumor has it that one doctor who has treated over 25,000 patients believes that even those who go into remission don't stay there for long. As soon as a life stressor comes along, then the bugs come out to play again.
When I asked another physician who has also treated thousands of patients whether she has ever seen anyone stay in remission for longer than ten years, she uttered sadly, "No." Since I know of a small handful of people who have been symptom-free for five years, when I asked her this question, I decided to up the ante to ten years.
But it isn't just Borrelia I am referring to here. Dr. Horowitz, at the recent ILADS conference, stated that we (physicians and patients) aren't beating Babesia. Some strains of this organism just refuse to be eradicated.
Despite my years of research, some of what I just shared with you is recent news to me. Yes, I knew there was no definitive test to determine whether Borrelia is gone from the body, but I didn't know that recurring relapses might be the norm.
I should have known, but then again, perhaps some of the doctors who have treated thousands don't want these facts to be made public knowledge. Maybe they don't want to get their patients' hopes up. Maybe nobody really wants to say, "You'll have to treat yourself for the rest of your life if you want to stay functional", because it would maintain people in a mindset of sickness and hopelessness, and the mind is a powerful thing.
Personally, when these realizations sunk into my soul, I was dismayed. I guess I thought that all those herbs and other remedies that I've taken, along with a strong supportive regimen, would eventually get me to a place where I would never again have to worry about Lyme disease and its insidious co-infections.
But it seems that once Lyme has taken up residence in your life, it's there to stay. If you choose conventional routes of healing, anyway.
It's good to hope for healing, but that hope needs to be based in reality, and not fantasy. I debated sharing this information with my readers. I didn't want to deflate anyone's hopes, but in the end, I decided that if lifelong relapse, or the rarity of remission is the reality of this beast, then the Lyme community needs to know about it.
I may be wrong. My information comes from my experiences with other Lyme sufferers, as well as from a handful of doctors, who, while knowledgeable and experienced, are still mortals. I hope that I am wrong, and that somebody who has been fully recovered for at least half a decade, will correct me with a testimony about his or her healing. Or that a Lyme-literate physician will rebuke me for this post with half a dozen citations of patients who have arrived at a place of total wellness and stayed there.
A Lyme-literate physician recently tested me via ART (autonomic response testing) to determine the current state of my infections. The testing revealed that I currently have no active forms of borrelia. I think I can thank the Bionic 880 biophoton device and my god for that. After at least 25 biophoton sessions this year, however, cystic forms of the organism still remain in my body (apparently). Does this mean that the Bionic 880 can't get rid of cysts? Dr. Woitzel, a physician in Germany who uses the Bionic 880, might say No, but this form of the organism does seem more tenacious. Whether the cysts cause symptoms is unknown. I remain symptomatic, in any case, due perhaps, to the damage that Lyme has done to my body, as well as to my Babesia and other infections. Bionic 880 treatments have helped to ameliorate some of my symptoms of Babesia, but I do not know whether the machine can completely get rid of this infection. The Lyme-literate doc thus prescribed me Mepron, along with zithromax, Noni and Cumanda.
"Here we go again," I thought as I left his office. "I'm getting on the treadmill again...for the fifth year in a row. Am I really getting anywhere with all these treatments?"
Yes, I am better than I was five years ago. Much better. But I am far from being able to keep up with my healthy forty-something friends (and I'm only thirty-five!).
The realization that I might have Lyme bugs forever and have to continually, or intermittently, treat the suckers, discouraged me, and not just because the symptoms that they produce are agonizing, but because of the limitations that they have placed on my life.
I'm fed up with spending ten hours a night in bed because I either have insomnia or need an abundance of rest. I'm sick of my days being cut short by unproductive, lethargic mornings, and never-ending treatments and doctor visits.
At times, and especially this year, I have had a more productive life, thankfully. Yet, treatments and living at half-throttle have meant that I still spend way too many hours of my life in the throes of Lyme.
I can't do this forever. I won't do this forever. It's nonsense.
So lately, every time I read about the latest pathogen-killing herb or antibiotic, the newest homeopathic remedy for detoxification, or the next test that promises to show which genetic defect is responsible for X and Y problems in the body, I think, "Who cares?" Why? People get excited about all these treatments and discoveries, and while they often deliver relief to the ailing, they usually fall short of expectations.
I am thankful for the gains that treatments, supplements, therapies and Lyme healing strategies have brought me, and I believe there is great worth in them, but a nagging voice inside my head these days is whispering, "It's never going to be enough, Connie."
So I'll go on some drugs for Babesia next year and improve another twenty, maybe thirty percent, if I'm lucky. Great! I'm grateful and happy for the gains that I will continue to make in my healing journey.
But how much of my life do I have to give up for these gains? Do I dedicate sixty thousand dollars and half of my waking hours over the next three years to attain this thirty percent improvement? Is the investment worth it? Well, perhaps, if the alternative is to backslide into a solitary, sedentary life on the sofa.
Don't worry, I'm going someplace better with this.
After I had fully digested my dismay over the realization that Lyme and the treatment treadmill might be for life, I came to a place of surrender of my circumstances.
In my prayers, I told God that I give up. That if this is as functional as I will ever be, then I will learn to manage life with some symptoms. I will stop striving for a life that may not be possible with man's medicine. I will continue to do treatments, but I will detach myself from the results of these, and I won't fret and sweat over my treatment decisions. Furthermore, I will not speak of this thing to others, I will not complain about how poorly I feel, and I will not go above and beyond in my treatment protocol, because Lyme just doesn't deserve that much of my time.
My body may clamor for a better treatment or more detoxification protocol, but my spirit clamors for a life outside of Lyme, and I believe that the spirit has more power to heal the body than any man-made remedy.
I'm not giving up, though. Recently, I attended a healing conference in Denver, in which healers, anointed with the Holy Spirit (in Christianity, it is God's Holy Spirit, living in people, that heals the body, mind and spirit), were used by God to heal others of their physical and emotional maladies. A woman who had never spoken to me before, approached me and prophesied that God was healing my back and central nervous system. Another said that God was burning away the infections in my body. (I have had tremendous hip and lower back pain for over a year now, so I thought that at least the first woman's prophecy was acccurate). While I left the conference feeling the same physically as when I had arrived, emotionally, I sensed that something had changed in me, and that I just needed to believe and receive the words.
At the church I attended for nearly two years in Costa Rica, I often witnessed miraculous healings. Some of those that were healed were my friends, so I knew the healings weren't a facade.
You may believe in divine, supernatural healing, but you may think that it is a rarity or that it doesn't apply to you. I used to believe these things, too.
I recently purchased a book called Christ The Healer, which gave me insights into divine healing, which, unlike man's medicine, is swift, complete, and often immediate.
Not that God is into formulas, but I believe that my god is into faith and wanting everyone to be well, and not twenty years down the road.
I won't discuss in this blog all of the compelling reasons why we can, and should, believe in a loving god for supernatural healing, but I strongly recommend Christ The Healer to anyone who is interested in learning more about physical healing through spiritual means.
I have always believed that God can lead people to the right remedies, and heal them however He chooses, but when the dollars and the remedies only go so far, perhaps He has a better way. I don't think the creator of the universe wants any of us to spend our entire lives fighting a beast that may be impossible to conquer with natural means. I think God has better plans for us. Yes, there is much to be learned about life through illness, but I don't think we need to be martyrs forever.
At least, that's my current thought on the matter. I pray that Christ The Healer would be a book of light to those that have no hope, or who are discouraged in their healing journey.
I encourage you to try the spiritual path to health. If you've been on man's meds for many years and made few gains, you really have nothing to lose.