Posted 10/8/2013 12:21 PM (GMT -7)
I haven't posted here for awhile, but I wanted to update a little on how I'm doing, since I know that there can be a shortage of people who are doing better posting on these forums. You might notice that I don't talk much about treating for Lyme in here, as the focus of my treatment has moved away from that. Even so, Lyme was my original diagnosis, and presumably lead to my symptoms, so I thought it might be relevant for some to see this.
I have posted some of my past experiences in the past, with the Hansa Center, genetic tests, chemical sensitivity, fear, as well as a plethora of neurological and muscolo-skeletal symptoms. I don't have the energy to repeat them here, but suffice it to say that for most of the past three years, I have been very ill, unable to work or take care of myself without assistance. I have probably had Lyme and co's, undiagnosed, for at least 15 years.
This past June, I made the decision to have a venoplasty procedure done to restore blood flow from my brain and other areas of my body. This was recommended by my doctor at Hansa, who used a CRT test to see persistent dysfunction in temperature regulation in the area of my head and neck. These readings persisted despite my treatment, and despite most other CRT areas improving. While my symptoms always got better after going to Hansa, they would soon start to slide backward, presumably due to the lack of blood flow, and something that my operating doctor refers to as Dysautonomia.
Over the years, I have found that I'm very sensitive/reactive to most things, including light, sound, stressful situations, medicines and chemicals, electrical fields, even acupuncture. Because of this, I've shifted to avoiding conventional MD's, drugs (including antibiotics), and was very reluctant to undergo an invasive surgical procedure.
I'm not sure in this case if I should say the name of the doctor who treated me. I think that he is completely open with what he does, as he doesn't specifically treat Lyme, but a particular neurological condition more often related to MS and Parkinson's. (Moderators, please let me know what is appropriate here.)
Anyway, Dr. A explained to me that while the venoplasty treats the blocked flow in the veins, he also has reason to believe he is doing something to mechanically reset the vagus nerve, which then helps the autonomic nervous system rebalance. This can affect all kinds of body functions, including thyroid, temperature regulation and brain function.
I got that Dr. A doesn't fully understand why he gets the results he does, but continues to do it because it works. Because of my trust in my Hansa doctor, and my strong desire to get better, I went through with it in spite of what felt to me like a lack of a clear picture of how this works.
During the procedure, I was semi-conscious. I felt various sensations, many uncomfortable of course. At one point toward the end, I felt a kind of opening and relief.
Dr. A told me that the jugular veins on both sides of my neck, as well as my left renal vein, were collapsed. He ballooned them and saw increased blood flow afterwards. He also saw mechanical compression impinging on those veins and some in my thoracic area, which he diagnosed as thoracic outlet syndrome. His recommendation, and that of my Hansa doctor, was to treat these with chiropractic adjustments to keep the blood flow strong.
After the operation, I was worn out for a full week, and hungover from the anesthesia. I still had a lot of symptoms, and at first I was afraid that there had been no improvement. Then, a week later, I had a biodynamic cranial sacral session, something I have always responded very well to. During this session, I went into a very deep relaxation, then took a nap afterwards. When I woke up in my car, I walked straight into a grocery store, completely forgetting the cane that I had been using constantly for the past few weeks. I was walking strongly and regaining my energy!
Since then, a little over 3 months, I have continued doing better than I was before. I have more energy, more ability to do complex projects and put together complex thoughts, and the number of symptoms I deal with daily has greatly decreased. The color in my face is much better, and I'm back to going on long walks regularly, and even some short mountain hikes. I have had some of these improvements before, but these are the most and longest lasting yet. My primary doctor, who didn't see me for a couple of months while I was traveling, says that she can really see the difference.
Still, I'm far from being one hundred percent. When my other symptoms began to clear out, the problems with chemical sensitivity seemed to rise to the forefront. I don't think the sensitivity increased. It's just that, now that I'm feeling better otherwise, the line between feeling good much of the time, and feeling crappy around perfumes, cigarette smoke, household chemicals etc. was much clearer. EMF sensitivity also seemed to be major problem. I found myself only wanting to camp in the mountains, and falling back to brain fog and feeling sick while in town. Even in the mountains, I had neurological symptoms like light sensitivity, headaches and visual disturbances when I tried to be too social - carrying on more than one conversation a day can really drain me.
While I was camping, I spoke with someone who recommended a woman who has developed a type of energy work to treat neurological imbalances. She also happens to treat allergies and chemical sensitivities, and apparently has a good record with healing people who have been so sensitive they are unable to live in a home.
I started treatments with her, and have noticed a little bit of decrease in my reactiveness to things. If someone lights a cigarette near me, I still move away as fast as possible, but the brief exposure doesn't knock me out for the rest of the day like it was doing before. Unfortunately, we had to leave the area of the treatment (due to the recent floods in Colorado), but I'm scheduled to go back soon and continue that work.
I am so grateful to have found this, as well as Hansa and my family doctor (a non-LL MD who is holistically oriented and very supportive.)
So, my journey has moved from focusing primarily on Lyme and co-infections to a bigger picture, including what is probably an inherent genetic sensitivity to various chemicals, as well as a low tolerance for stress (I think I posted a little on the genetic angle earlier, under the heading DetoxiGenomic Profile Results, so you can look that up if you're interested). I wanted to share this in case anyone else is considering CCSVI/Dysautonomia treatment, or is finding themselves with increased chemical sensitivities after chronic Lyme. In my experience, this is an involved path, but does seem to be treatable.
I still consider that I probably have Lyme and/or co-infections in my body, as these don't seem to fully eradicate in most chronic cases, especially with people who are "poor detoxifiers". My main way of dealing with this is to take very good care of myself in what I eat and expose myself to, and avoid stress as much as possible. I feel that inner work and meditation/prayer are essential to me as well. In addition, for right now, I'm applying for disability, as I am still too reactive to the chemicals, light and stress of most all work environments. My hope is that over time I can create a living situation that is healthy enough that I can develop a work-at-home business that allows me to work when I am feeling well, and rest when I am not. I suppose this is an ideal for many people, not just those with Lyme!