Lyme Disase, My Story, The Larger Story

Lyme Disease -- My Story, The Larger Story

I've been in remission from Lyme Disease for five years now, five glorious years of being able to get up in the morning, to bounce out of bed lightly, with ease. When I was ill, it was a struggle to get up because I could not connect my will power with the nerves in my body, which lay numbly in bed, as if a separate entity from me. This disconnect was due to toxins in my brain. The toxins were generated by the bacteria, with the specific goal of paralyzing the host, me.

To wake up in the morning and get out of bed is one of the many luxuries of  regained health. Being able to remember words and easily put together sentences is another. Being able to speak without having to work at not slurring, to not experience the unexpected odd or raging pain, and to get through the entire days without having to take multiple naps is a huge relief. The reduction in chemical sensitivities (I no longer gag at smelling perfume, and can enter a retail store without getting a headache) has made moving through the world much easier. But having a reliably clear, well-functioning brain has been the best gift of all. How we take being able to think clearly for granted until it is lost!

If you go to youtube and search Lyme Disease, you'll find many people talking about their symptoms. What you don't see is the effort required for these people to make these films--the concentration required to speak clearly and smoothly, the effort to organize their thoughts, the will power required to find a moment when they feel well enough to make as good of an impression as they do. People with Lyme Disease often appear "normal" due to their effort to function, but it is all theater. They are anything but the norm, anything but well.

I don't know when I first contracted Lyme disease from an insect bite (probably a tick). In my late teens I often hiked in the mountains of Southern California. I was 20 years old when I felt distinct, odd symptoms: shooting pain in my legs, dizziness on waking, cracking sounds in my skull, as the plates of my skull expanded to encompass my inflamed brain. These symptoms were followed by bouts of viral illness and  months of extreme fatigue.

This was in 1976, before Lyme disease as such was known. I did what I could for myself with meditation, yoga, and a raw foods diet. The latter was especially helpful. It cleared my brain and gave me a lot of energy. I believe that the yoga and meditation also helped, and that playing the flute (I was studying music), because it required deep breathing and kept me well oxygenated, was also helpful.

After a year on a raw foods diet, I could modify the diet and still feel fairly well. I believe that my own immune system had succeeded in getting the Lyme bacteria under control. Still, I dealt with various degrees of fatigue throughout the following years. After the birth of my children, it was the worst. Talk about postpartum exhaustion! That's when I discovered that the "correct combining diet" aka Harvey Diamond's "Fit For Life" could turn my energy around. After about two years, I could modify the diet and still feel very good.

This was one of the many lessons in the role of the diet in the postpartum that led to my writing "Mother Food: A Breastfeeding Diet Guide with Lactogenic Foods and Herbs." Along with profound exhaustion came problems with sufficient breast milk supply to feed my babies. I asked the mother-care nurse what I could eat to increase my supply, and she replied that, to her knowledge, lactation happened independently of diet. I immediately felt that this wasn't true. I had seen how a raw foods diet could alleviate fatigue and depression. I had seen the profound effect of food on brain function. I was absolutely sure that foods and herbs existed that would help to increase my milk supply. I was also sure that women around the world would be able to tell me what those are. But my mother-care nurse had not heard about lactogenic foods and herbs, and this obviously had to do with our own culture and history.

As time went on, I would discover many foods for lactation. Having four babies offered me ample time to experiment. I would also learn to understand the immune-boosting effect of many foods and herbs. Many of the same foods and herbs that increase milk supply, or that increase the immune substances in breastmilk, would be helpful in keeping Lyme disease at bay.

In 2000, when my youngest child was eight years old, I came home from a hike with a tick buried in my arm. Lyme Disease quickly developed. I had various pains, lost my energy and concentration, and felt a band of tension around my head all the time. My family doctor gave me doxycyline for four weeks, and I experience for the first time what a "herxheimer reaction" was in the context of Lyme disease.

The "herx" is a temporary increase in symptoms as a response to the die-off of pathogens. When being attacked by any anti-microbial, such as antibiotics, the Lyme bacteria produce powerful toxins and neurotoxins to try to defend themselves from the host. In effect, they poison the host, trying to discourage the host from the healing behavior, for instance, from taking antibiotics. In addition, their dead cellular shells are released in massive numbers throughout the body, overloading the liver and kidney and triggering autoimmune inflammatory reactions.

During that very first herx, which lasted about a week, I could not write, I could not read, I could not follow a conversation, I could not walk fluidly but rather I slowly waddled like a duck. Going up or down stairs, I had to be very careful because my feet were numb, as if they pillows. My arms were also extremely weak. I could hardly lift them.

The worst part was the isolation. I could not tell anyone about my experience because my brain could not find the words. I could not cry or get angry because I couldn't muster the emotive energy. All my concentration went into deciphering the basic steps of necessary tasks. My family needed me to function, so I tried. For instance, if I was cooking, I struggled to remember where the salt was, and then to remember how to open the cabinet to get it. "Pull on the knob." Because I functioned, albeit slowly, no one noticed that anything was wrong. Thank goodness there were no emergencies that week--I would have been unable to react.

When I later learned that Lyme Disease is sometimes misdiagnosed as quick-onset Alzheimer's, I could only nod in agreement. That first herx experience had been like being dropped into full blown dementia2--not at all something anyone wants to experience. However, I have to say that the experience was its own "teaching," because since then, and in general, struggling with the cognitive issues created by Lyme disease, I gained an appreciation for all kinds of brain damage, and for the loss of short term memory experienced by many, and for autism and ADD -- both thought to be entangled with the Lyme paradigm.

Back to my story -- when the first herx passed, I looked online for self-help groups. What I learned shocked me: Lyme disease was a battle field. Institutions and corporations such as the Center for Disease Control, pharma industries and  insurance agencies all stood solidly together, holding their front. On the other side of the demarkation stood MDs whose clinical experiences and protocols inherently contradicted the core position of the "CDC and co." In a nutshell, the one "army" maintains that Lyme disease is easy to heal quickly with short term antibiotics, while the other insists that treatment is complex and must be applied at least for several months.

Unbelievably, the CDC reached their conclusions about the "quick" solution after very little research, and they stuck to it. When the CDC claims that they base their guidelines on "extensive research" they in fact reference limited studies done exclusively by their own people. Independent studies are ignored.

This behavior of our most reputable institution for the protection of the health of Americans appears unexplainable until we realize that Lyme disease was doubtless "weaponized" in several laboratories after WWII. It cannot be a coincidence that the first major outbreak of Lyme was found in a direct line as theoffs bird flies from the offshore laboratory where such research was conducted.

It is impossible to penetrate into the historical background of the development of Lyme disease, however, or to challenge the CDC's stance on treatment, because to do so would evoke the statement that it is a "matter of National Security," and any such matter is beyond the freedom of information act.

Through having Lyme Disease myself, I have become aware that maintaining an optimal immune system is more important than ever--starting with a good pre-pregnancy detox of the mother and father, continuing with good diet during pregnancy, and if possible, followed by lengthy breastfeeding of our babies.

We all live in a world of increased toxins, and of intentionally and unintentionally man-created diseases. They affect us all, regardless of race, gender or socio-economic status.