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Somethings old, somethings new

Wednesday, March 20, 2013

I went on a trip at the beginning of March to the deserts of southern California with my husband. I took about 8 days off from coiling to go on the trip. It gave me time to think about lots of things while we drove down and back, as well as while we enjoyed the natural environment. Since then, I’ve been really tired. REALLY TIRED. It took about 10 days after we got back for me to have enough energy to write or do much of anything besides sit or rest. In fact, everything I did for those 10 days back required so much effort that I kept wishing I was lying down on the Biomat reading or listening to the radio.

The time when I came back also gave me lots of time to think. I have a sense of how sick I used to be, how much I’ve improved, and how much healing I have left to do. I have new perspectives on some of the detox methods I was using, on the role of probiotics and on the concept of chronic infections. I have a continued desire to coil until I get to the end of these infections, and a wariness that I may have more infections to deal with than the ones I’ve already tackled. I’ve had time to consider my future goals, activities and dreams, and experience the disappointment that I can’t just jump up and do them while I’m lying in the living room, too tired to move and too achy to concentrate.

Walking

While we were on our trip, we did a few hikes. Most of them were on flat surfaces, some sandy or rocky, some pretty well groomed trails. There were two, however, that posed major challenges. Both of these were near the visitor’s center in Anza-Borrego Desert State Park. Much of the park and the town, Borrego Springs, contained within it, are a flat desert area surrounded by small mountains. The space felt wide open, the opposite of the 5 years I spent in my small NYC apartment.

The first of the hikes was long and on uneven terrain. There were several other groups and pairs we met along the way. All of them passed us by. I started to feel like I was forcing us to move at a glacial pace. Joe didn’t seem to mind. As we meandered, rather than hiked, we had time to look at the flowering bushes with bees buzzing in them and spot birds that we heard. We stopped often for me to take photographs. It took us much longer than most people who were out that day.

Big Horned Sheep at Anza-Borrego

Big Horned Sheep at Anza-Borrego

There were benefits to going slowly and affording me time to stop and rest. We saw a desert iguana and a lizard. We paused for at least a half hour to look at big horned sheep. The longer we stayed still, the closer the animals came to us. I was pleased that I was well enough to take photos along the way. In the past, such as when I went to Italy, my energy was so stretched that I couldn’t even think about taking pictures, even when I was in a wheelchair. When I was walking with a cane, it was completely impossible. Even this past summer during my honeymoon, I couldn’t take pictures. It was beyond my capacity.

I was exhausted after the hike, but it was well worth it.

The second hike involved going up and down a hill. It was rocky. Going up hill was tiring, but relatively easy on my legs.  When I got to the point that I was winded, we turned around. I looked out at the huge expanse of desert and thought it was beautiful. And that it would be a really long walk from one end to the other.

That thought led to a memory of trying to walk down the hallway in the basement of my apartment. I used to take the elevator to the basement and walk out through the service entrance because I was too disabled to go up or down stairs. I had to walk about 60 feet to get out of the building. I remember stepping out of the elevator and getting discouraged because the distance I had to walk would take me 15 minutes and use up all my energy before I got in the car to head to the doctor’s office. Or in the reverse, when I got home, I felt like the walk to the elevator was so long I might pass out before I could get to my apartment. I used to get winded doing that walk.

Yet here I was, on the side of a hill, feeling triumphant.

Rose Hiking at Anza-Borrego

Rose Hiking at Anza-Borrego

Then I had to get back down. It was tremendously hard. My balance is totally fine on level surfaces and going up. Going down is very difficult, making me feel like I might tip over at any moment. Though I was scared, I slowly made my way down. I felt a sense of accomplishment at the bottom.

Needless to say, these hikes and the other walks I was on contributed to my requiring 10 days of recovery and rest. But the moments were more than worth it.

Resting

During the trip, I didn’t do any driving. I was too tired by the end of the first day, and I never recovered my energy. The rest of the trip, I was pushing through the fatigue to enjoy myself. It was worth pushing, but each day got a little tougher.

I often explain to people that I am like a cell phone with an old battery. It takes a long time to recharge. Then the charge wears out before the phone can do much. It is the fatigue that bothers me most. I keep believing that as I get better, the fatigue will diminish until I become like a regular person. If I get tired out one day, I want to sleep it off and wake up refreshed the next day.

Stamina is the predicate for all my other dreams.

Detoxing Foibles

Since I came back, I’ve been thinking about heading to the gym and hanging out for a while in the sauna. I’ve decided not to do it again for the time being. It was important to use the sauna when I first started coiling extensively for Bartonella. The pain in my kidneys was unbearable. I kept having visions of new kidney stones forming. (As far as I know, none have.)

Regularly heating my body enough to have big sweats removed some of the toxin load from my kidneys. I can’t imagine I would have been able to coil as much as I did and knock down the infection as much as I did without using the sauna.

But there was a downside. I’m pretty sure I suppressed the Lyme infection for much of the season. I didn’t intend to do that. In the moment, it felt so nice not to be saddled with fatigue for the rest of the day after going to the sauna. I remember thinking that if I just went, I wouldn’t feel so tired. The sauna gave me the expected result consistently.

As I’ve wallowed in the fatigue of the Lyme infection this spring, I’ve been a little angry at myself. I feel like I lost the fall season and not knocked down the Lyme infection as much as I could have. I’ve come to accept the trade-off (Bartonella reduction vs Lyme reduction). But now I’m very wary of heating my body too much. I’d rather suffer through the fatigue, even when it makes me feel depressed dealing with it for too many days in a row, and leave the Lyme bacteria in their active, susceptible form.

This is also the reason I’ve been reluctant to find an acupuncturist. I think that acupuncture has, in the past, boosted my immune system, and for several years kept all the tick-borne infections under control and significantly dormant. I don’t want to do that now. I’m trying to get the infections to activate and be killed off.

Probiotics

During the trip as well as when I came back, I couldn’t stop thinking about intestinal bacteria. As the Human Microbiome Project starts to release information from the studies it supports, it is becoming clearer that intestinal bacteria are a major component of and the first line of defense in the human immune system.

The first thing on my mind is that it is time to take some heavy-duty probiotics again. On Monday, I started taking VSL#3 again. I took it in March last year. Last time, it led to so much gas and bloating that I was doubled over in pain the first few days. The intended result was that the beneficial bacteria would populate my gut in sustainable colonies.

I knew it was time to do it again because I was having gut problems with the Bartonella die-offs and possible increase in their activity in response to the die-offs. I’m taking two capsules a day, so far, with the possibility of increasing to three after a week. The gas and bloating isn’t nearly as bad this time. I find this encouraging. I’ve also been looking at some other strong probiotic formulas with different species of bacteria in them. I’m planning on trying a few different ones over the next few months to get my digestive tract into the best shape I can.

That’s about correcting any intestinal microbial deficiencies I’m currently experiencing. I imagine that doing so will prevent the rest of my immune system from having to fight so hard against any new intruders. It will probably also help my body get the most nutrients out of whatever foods I eat.

There is a second piece to this puzzle. I have been wondering what I can do about other infections that have permeated my gut and gotten lodged in other areas of my body. For the most part, I think I will just keep coiling away at everything I know I have and try coiling infections I might have.

But for other people with chronic illnesses, ranging from autoimmune disorders to diabetes, I wonder if these are symptoms of infections that we don’t yet know how to detect. I’ve considered the possibility that our diets, our mercury fillings, our exposure to pesticides, chlorinated water and other pollutants, has imbalanced our intestinal flora enough that bacteria which are benign in our intestines end up permeating it and infecting our other cells and causing illness. The tools developed through the Human Microbiome Project may allow medical researchers to hunt for non-human DNA in fat tissue of diabetics, for example, to possibly discover a microbe that causes cells to become insulin resistant.

Those are my musings. I have no evidence that any of this is true, but these ideas lead to testable hypotheses for the medical research community.

Lyme Goals

Before I left, I started putting together what I hope will become a book about how to coil for Lyme Disease and other tick-borne illnesses. When I started this blog, my intentions were to keep a record for myself and to share my experience in a usable way with other people who are using coil machines. In the past two years, I’ve written over 350 posts, some with very useful observations and some that are about my day to day experience. Even I’m having a hard time finding old posts I know I wrote about a given topic or experience. I suspect it is much harder for someone who runs into my blog for the first time today!

I came up with two solutions to deal with the information I’ve gathered. One is to organize a few pages with links to posts about topics that are important to me. I imagine I might do this over the next month or two (or hopefully by the end of July!) The other is to write a book with a straightforward narrative of my experiences with the coil machine and sections about each of the illnesses I’ve worked on as well as the other things I’ve been doing to support my health. By the time I finish this post, I’ll have dumped out all the stuff in my head from the past few weeks and be able to focus on the book for a few days.

Long-Term Future

Right before I went on vacation, I went to my second Lyme Disease support group. It was so useful to be in contact with other people fighting the illness. First, it made me more convinced that I need to write my coiling book because there are other people who could learn from it, and it helps me clarify my thinking and explain better what I’ve learned. Second, the group got me thinking about babies, again.

My current plan is to keep coiling until I stop having flares. If this happens by the time I turn 40 (two years away), then great. I’ll consider having children. If I’m still regularly sick and regularly fatigued, then raising a child or children seems like a pretty bad idea. But if I’m relatively healthy when I’m not having flares, but still getting seasonal flares, then things get tricky. One of the women I spoke to reminded me of two things I’ve read in a few different places, and heard from women who had Lyme when they were pregnant. First is that while pregnant, they felt fully healthy again. Second, there are antibiotics that are safe during pregnancy that prevent the child from contracting any tick-borne illnesses.

It left open a possibility I hadn’t considered. I thought I left antibiotics behind forever (at least as a treatment for these chronic illnesses). Now the door is open again. My hope is that I can stop thinking about it for the next year or two. Then when I need to make a decision, I’ll consider it with fresh eyes.

Erlichia and Beyond

I have a list of tick-borne illnesses and other chronic infections associated with Chronic Fatigue Syndrome and Fibromyalgia. Of the tick-borne illnesses, I tested positive for Lyme, Bartonella and Babesia. Among the other illnesses, I’ve tested very positive for Epstein-Barr and HHV-6; I even took antiviral drugs before I found out I had Lyme Disease.

Mostly, though, I thought I would coil until I got rid of my three main infections and then go through the other ones to see if I felt even better by reducing the loads of any I might have until my immune system could take over.

Now I’m in a mild panic over the possibility that I might actually have a chronic Erlichia or Mycoplasma fermentans infection. The idea hit me when I was in the support group and someone started talking about bone pain. Not joint pain, but bone pain, as a symptom of Erlichia. When I looked it up in the differential diagnosis section of Burrascano’s Advanced Topics in Lyme pamphlet, I saw that muscle pain, as opposed to joint pain, was one of the key symptoms. Oh no. Bone pain comes and goes. But it has been getting worse as I’ve reduced the Bartonella and Lyme loads. For the past several days, my heels, shins and knees have been excruciating. Muscle pain has been worse as well. I’m afraid that a possible case of Erlichia is becoming active.

It scares me to think I’m going to have to start up on these other infections and go at them hard like I’m doing with Bartonella. I know less about them generally and even less about using the coil machine on them. I feel daunted by the task ahead of me.

Back to Bartonella

My best guess is that coiling twice a day will get rid of Bartonella. I don’t actually have to do the midday coiling to eradicate this disease. Amazingly, the herxes are getting less debilitating (though that could be as a result of Lyme activity and herxes counteracting some of the symptoms). I’m not awake all night anymore. That by itself makes everything better. I’m still getting light nightsweats most nights. I’m still having bowel troubles. I feel pretty sure I’m over the hump. I’m still coiling a third time per day most days. I think that the third coiling session is getting me to a better place much faster than just the two sessions a day.

I’m hopeful that I’ll get through this soon. Especially now that I’m worried about what else I may have to coil for.

Lyme Echoes

I’m regularly tired. My joints ache and pop all the time again. That much is clearly from Lyme. My last menstrual cycle was bad again. It seems that as the Lyme gets more  active, my hormones get all screwed up again. I’ve got high hopes that as I coil the infection down to inactivity again, my period will get close to normal again.

Some day soon, I hope to be close to normal again…

Disclaimer

One comment

  1. So happy to have read this update not just on your recovery, that though filled with ups and downs, is good news nonetheless! But more than that, it’s nice to read that you are making future plans, which for a long time was not possible for you. You were constantly living more or less day to day … and now you are considering children and going on more vigorous hikes that challenge you in ways that did not feel possible to you while here in NYC. I’m thrilled to read about your progress and send you my support! All the best to you and Joe!



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