Recently our energy group leader cut us off without any notice. He said that he decided to give us a week without the energy broadcasts and see how we do. I really don’t feel much different. He told us that we have had some reversal of benefit. I am feeling annoyed and wanting to quit, but if this is doing me any good at all – then I want to continue. The only good Lyme bug is a dead one. My energy medicine leader says – “still plenty bugs to go”; “only about half way there”. Halfway where? Is he asking me to believe that in another 8 months I will be cured? I’m too demoralized for that.

Recently, my doctor gave me a homeopathic treatment, which lasted a month. One little vial of strong alcohol tasting stuff I drank every three days. I didn’t feel much during the time I was taking it. It seems to be another faith-based treatment. I believe it helped to some degree. I have believed in it all. The list of failures is impressive. Such a long, long dismal journey.

Musings of a Mad Woman:

An interesting comment my doctor made during my visit with him on Friday: I was mentioning about having so many pathogens and so much die-off and daily herxing. He said that we probably have more pathogens in our bodies than we have "ourselves" in our bodies. I can see that it will take a long time for our body's immune systems to recover enough to kill off (no matter what path of treatment we follow) a majority of the pathogens that make us the sickest and therefore to begin to feel better. Our immune system wages a continuous battle - and our immune systems have been completely overrun and have to pull themselves up out of the muck of pathogens and continue fighting. So it ends up being a continuous battle followed by a continuous dumping of toxic garbage. It also seems to me that after only 5 months of energy transmissions, that it is most unlikely that we would even feel a little better. Most likely that we would feel horrible. And so on perhaps for a long time! i.e.: Improved Immune Systems = Killing pathogens = Dumping of toxins = Feeling crappy = Progress :).

So that is the jist of my entry this date, 5/23/05, I'm still hanging in there, trying to get the most I can from the methods I am using (samento and energy and non-toxic living) and having a long long way to go.

I appreciate your strength and your support for me during this long long lonesome road.

Then about a year ago I read about a woman located on the east coast who could tune musical instruments without touching them. The writer of the article said that this woman could tune instruments even long distance and that the owner of the instrument (the writer in this case) even benefited physically from the tuning. I still have that article and have never called her. I felt embarrassed to call her without an instrument to tune.

My third brush with energy medicine was about 3 years ago, when I was very sick. My husband drove me to Calistoga. The twenty-seven mile distance was brutal for me to tolerate. I visited with a practitioner who treated me energetically. She muscle tested me to find the initial insult to my health. It was an early memory of an argument between my mother and my father when I was very young and still in a crib. She treated me with flower essences. I found that for a few weeks, I had vivid long intricate dreams. I wrote them in my health notebook. I had a second visit with her, in which she found that my third chakra was wide open and energy was pouring out. She closed it for me.

I liked her and her “flower child” type of treatment, but I was running out of money and the trip was so difficult and so long and sadly, I didn’t go back.

Recently, I enrolled in an energy medicine research project. I signed a confidentiality contract. So with some previous good experiences and some not-so-good experiences, I again put my faith in connecting with the energies of the Universe.

Cell-mediated immunity is an immune response that involves the activation of macrophages and NK-cells, the production of antigen-specific cytotoxic T-lymphocytes, and the release of various cytokines in response to an antigen.

Translation: The cellular immune system protects the body by:

1. activating specific white cells (T-lymphocytes) that are able to blow up body cells that have foreign material attached to their surface, such as virus-infected cells, cells with intracellular bacteria, and cancer cells displaying tumor material;
2. activating other specific white cells (macrophages and NK cells), enabling them to destroy intracellular pathogens; and
3. stimulating cells that influence the function of other cells involved in adaptive immune responses and innate immune responses.

Cell-mediated immunity is most effective in removing virus-infected cells, but also participates in defending against intracellular bacteria.

The idea here is that the cellular immune system is stimulated by the Samento so that the body can defend itself and destroy infected cells and their contents of pathogenic material.

I recently heard a term used that set me to thinking. The term was, “the body's cellular immune system”. The human body evolved with the ability to protect itself from diseases. Healing the body’s “inner terrain” will encourage the body’s natural ability to heal itself. So this message seems to be “heal your self and your self will heal itself.” I’ll get back to you on this.

I have written in two recent posts about my current direction: Samento and Detox. This has been going on for several months. Mainly the Samento, not so much the Detox, although it’s my intention to increase the Detox. I’m drinking green tea and trying to support the body’s natural ability to detox. You may not hear from me on this forum so often. You can sign up for a notice when I do post – there is a new sign-up by e-mail at the bottom of the right column. You will be automatically notified whenever I make a new post.

I have been taking samento for 6 months. How a chronically ill person feels from day to day is almost unnoticeable, but how one feels from month to month is a little easier to identify, and from year to year is even more so. Consequently, I can say this: In the last 6 months - I don't feel worse. I have been maintaining a daily routine which includes some cooking, some housecleaning, some computer work for my husband?s business and getting out of the house a bit ? by myself. Little improvements are what I expect. I got sick slowly, and I expect to get well slowly, as the pathogens are exposed and killed.

Given my atypical patterns leading nowhere, my doctor decided we'd try an Igenex Western Blot Lyme test just 5 months ago. Igenex is the leading lab in the U.S. for Lyme testing. It came back positive...

Honestly - I have learned not to be too hopeful - I wonder if this is really the problem. I hardly dare to believe it. After all the doctors and all the searching and all the diagnoses that I thought were finally the end of the search. Could this be a false finding? Is this "IT"? Am I finally there? Can I stop searching for an answer? Do I have something to fight? Pinch me. Am I dreaming? A chronic infection? just what Dr. G. had guessed from my first visit with him. We just didn't know which one - especially with all the tests coming back negative. An infection - caused by a bacteria and spread by ticks, mites, fleas and mosquitoes. I've only been sick a few times in my life before being clobbered by Lyme, and I really never imagined I'd spend years of my life battling a mysterious illness.

No more mystery? I'm still not convinced. There is one test - not approved by the FDA (who cares?). But they look directly at the cells and if they find Lyme, they take a picture of it . My doctor doesn't have 100% faith in its accuracy but I'm sort of tantalized but that picture idea. Of course I just want to know - is it - or is not Lyme?

It is a disease that is "clinically diagnosed". Meaning that it is described by symptoms - joint pain, severe neurological disturbances, chronic fatigue, fibromyalgia, and a long, long list of other problems. I was clinically diagnosed as not having Lyme because - my interpretation - I just didn't have enough symptoms! (There's that "atypical" Laureen again.) And the reason - again, my interpretation - is that I have a strong constitution! That's right - genetically, I am strong enough to be able to fight many of the borrelia's attacks. It just seems that some people are genetically stronger in the face of this disease. I am so grateful that I am not so much worse.

There are people who are so miserably sick. I have recently exchanged emails with a woman who is taking care of her 26 year old daughter who has had Lyme for 14 years and has been bedridden for 7 years. I believe I should count my blessings.

"Can Lyme tests be negative? How is that possible?" Lab tests for Lyme are notoriously incorrect. Lyme has a number of ways to avoid being attacked by the body's immune system - for one example, it has a slime coat on its cell wall which protects it from being identified as a foreign protein and without this recognition by the immune system, the lab test has no antibodies to identify.

"Why didn't you just stop there?" Actually, we did stop there. We accepted this "No Lyme" clinical diagnosis for 2 more years. Most Lyme is misdiagnosed as one or more of over 300 diseases that it can mimic.

"What made you test again?" My doctor decided to test again because I was following a peculiar pattern. He described it as, "You're just so atypical for everything we've tried. And you are so cyclical - you feel ok for a while and you feel lousy for a while and it cycles back and forth. Nothing seemed to make you feel better for long. It just felt it had to be Lyme."

We used a test called the "Western Blot". He cautioned, "You can sometimes get a false result, but let's try." The result came back "very positive." I have since read an evaluation of this test, which said that false positives are extremely rare.

Dr. G. greeted me in the waiting room. He escorted me to his treatment room - a comfy Feng Shui�ed room with a sofa and a massage table with a pink sheet for an exam table. My husband was made to feel welcome and sat next to me. For the next hour and a half, he listened to my history, wrote notes and asked for occasional clarification.

Then he gave me a short physical exam. "Not only do you have CFS, but you have Fibromyalgia, too."

In January, I had one 4-day crash. In February again one crash, in March two. More in April and May. On May 15th, I took a month sick leave. I thought all I needed was a break from my stressful job and hateful new boss. In June I went back to work. I worked for two days and crashed again. I assumed it was my job that was making me sick and quit.

Crashes continued to come regularly and often. They all had the same sequence:

1) Severe pounding, splitting headaches woke me up anytime from 3 to 7 am. Disappeared when upright, returned when laying down, relieved by excedrine extra strength. The pounding of the headaches was located in the back of my skull.
2) Insatiable hunger - no appetite, constant stomach gas. We discovered that I could drink soy milk by the quart in one sitting. The liquid soothed my stomach and relieved my hunger and even though I was hungry, I just couldn't eat much.
3) Complete exhaustion and weakness, anxiety, dizziness and disorientation on standing
4) Heart pounding as though I had run a marathon, body throbbing as though it were trying to get oxygen.
5) Sound and noise sensitive - I had to have complete silence

January 2001 - My husband came rushing into the house one day. "Turn on the radio!� There's a guy on who sounds just like you! He was Keith Jarrett, a musician who had Chronic Fatigue Syndrome. I listened to the interview over and over again on the internet. He was me. That's it - it's Chronic Fatigue Syndrome. At last - but can it be cured? And is it the cause of all this misery? And will I be all better once I get rid of it? Back to the internet!

My illness came on slowly - over a period of several years. I had my first symptom in April of 1997. It was an itchy spot which grew into a rashy patch when I scratched it. It slowly became worse and spread over most of my body. The allergist controlled it with prednisone - which coincidentally depleted my bones. Then he told me he didn't know what else to do for me and sent me back to my own useless primary doctor.

I tried acupuncture to no avail. I switched doctors - tried one who was a "nutritionist" and relied on natural treatments when possible. I continued to have increasing problems - hormone dysfunction, then adrenal insufficiency. Problems seemed to just come out of nowhere. I had always been a healthy strong individual. This was just unbelievable. How could my body all of a sudden after all these years suddenly fail me this way?

It has been 4 months, May 20, 2004, since my doctor said, "Well it looks like you have Lyme after all." I don't remember why, but my doctor just got a bug (pun intended) to do a Western Blot test. It came back "very positive". My jaw dropped and I just stared at him. I couldn't take it in for a moment or two. I had to brace myself and leaned on the examining table. Because of this little bug and its bazillion friends taking up residence in my cells I have lost my previously normal life. I have lost my job, my paycheck, my health insurance, my health, my ability to leave the house for more than a few hours, my ability to play with my wonderful tornado of a 3-year-old grandson, my ability to go to a concert or the beach with my husband.

The First Great Imitator was Syphilis. It also disguised itself as a myriad of different diseases. Both Syphilis and Lyme are spirochetes and look very much alike under the microscope. This is the term for the type of bacterium. It's a long skinny worm shape with pointed ends that can move easily through tissue with a spiral spring-like motion. It can even change its shape when needed. It can shed its cell wall and enter a cell, where it can remain undetected because the body's own cells provide it with a perfect place to hide. It can hide in muscle, organ, joints, brain. No cell is safe from its intrusion. When it leaves a dying cell to look for new territory, it takes a piece of the cell's membrane and travels covered in a cloak of the body's own cell wall material - undetectable and unchallenged by the body's immune system.

I don't suggest that the Lyme bacterium has a brain, intellect and free will, but I do hail the mysteries of evolution that could produce such a perfect storm.