Progress Report: October 2018
It’s been over two years since I’ve updated everyone on my progress. There are multiple reasons for that, some of which I’ll try to explain in this post. I’ll just start out by saying that I am better, but not better enough to have much of a life. I basically stay home unless I have a doctor appointment. Still, there have been a number of important changes in my life since my last post.
The disability battle
First and foremost, I’ve been battling to get disability for much of the past two years. The state of California has a pretty great disability system if you are unable to work for 12 months or less. You get a fairly small monthly amount (less than 25% of my salary) and it’s really easy to apply and start getting paid. I had no trouble receiving state disability for those first 12 months. The problem was with the disability insurance at work.
My former employer’s disability insurance covered short-term disability for up to 12 weeks and long-term disability until the age of 65. Initially, they only gave me six weeks of short-term disability and denied me the rest. I appealed that decision twice, and both times was denied. I didn’t think they would grant long-term disability given the short-term disability denial, but I submitted the paperwork anyway. I received no response.
Eventually, I hired Andrew Kantor from Kantor & Kantor to fight for the disability I deserved. At this point, I was living off of my savings and book royalties, which was barely keeping my head above water. I was advised to not blog about my health or make any comments about my health while we were in litigation so I didn’t accidentally say anything that could be used against me. Hence, abandoning this blog.
Long story short, it took two years, but Andrew eventually got me both the remaining six weeks of short-term disability and long-term disability going forward. The disability insurance company had to pay me retroactively for all the time I waited, plus interest. 25% of what I get goes to Kantor & Kantor as payment for their services, which hurts, but I would be getting $0 from the disability insurance company without their help, so it’s definitely well worth it.
The mold factor
Over the winter of 2016–2017, my condition worsened considerably. There were times I thought I might die accompanied by times I wished I would so this would all be over. I’m glad I didn’t, because something important was just around the corner.
I had been on cholestyramine since beginning Lyme treatment. My doctor suspected I had been exposed to mold at some point, and cholestyramine is an effective binders for mold toxins. That winter he decided to switch me to something else, and within three days of the switch, I could barely get out of bed. I felt like I’d been hit by a truck.
When I explained this to my doctor, he said, “well, the only reason that happens is that you’re being exposed to mold.” Huh? How would I be exposed to mold? “You’re probably living in it.” Well, what should I do? “Move.”
Moving was the last thing I wanted to do. Think back to the last time you had a bad cold, what did you want? Probably just to stay home and nest until you got better. I felt the same way, every day, and now my doctor was telling me I needed to move for my health.
I really didn’t know anything about mold at that point. What I did know was that the apartment I was living in had multiple water issues while I was living there. The roof had leaked, the window had leaked (believed to have come from inside the wall), the skylight had leaked, and the shower had leaked into the floor beneath it. My landlord fixed the leaks each time but really hadn’t dug into the falls or floors to look for remaining moisture. Once I found mold growing inside the skylight, I had enough evidence to ask to break my lease and get my security deposit back.
I moved in May of 2017 to a new, clean place, and it was one of the most stressful periods of my life. I wasn’t well enough to go out looking for another apartment, so my mother had to fly out and do the search for me. I hired a realtor to help identify possible apartments and sent my mother out with her to look. Eventually, I found a place. It is quite a bit more expensive than where I was (over $600/month more — thanks Bay Area) but it had been recently renovated and was immaculate, both of which were important because the last thing I needed was to move into another place with mold.
As if the stress of the move itself wasn’t bad enough, I had the additional stress of needing to get rid of most of my possessions. Because mold in your home means mold in and on all of your things, there were a lot of things I needed to leave behind. My doctor informed me of these restrictions:
- Clothes could be washed with Borax and detergent and kept.
- Finished wood, plastics, and metals could be wiped down with Formula 409 and kept.
- Mattresses and pillows could be wrapped in dust mite covers that can never be removed. (I opted to get a new mattress but kept my pillows.)
- Anything porous or upholstered had to be thrown away, which meant furniture, books (including the ones I wrote), unfinished wood (some furniture), stuffed animals, papers, cardboard boxes, etc., had to be thrown away.
- Air filters, fans, air conditioners, hair dryers, vacuum cleaners all had to be thrown away.
- Electrical equipment had to be wiped down with Formula 409 and vacuumed inside and out to remove any contamination.
- Anything that I couldn’t clean needed to be thrown away.
When it was all said and done, I was left with my clothes and towels, my leather recliner, my desktop computer, printer, TV, Apple TV, coffee table, and computer desk. I was so grateful for the help of over a dozen friends, who volunteered to throw things out, clean things, and carry things into my new place. I never would have been able to do it without them.
The next three months were really difficult for me. I’ve never dealt with moving very well, and the stress of being sick coupled with the loss of so many familiar things only added to that stress. My body got into a hyper-vigilant state where I was experiencing PTSD-like symptoms every day. There were days where I just laid in the fetal position on my (new) couch with hands over my ears praying for sleep and crying every time I heard a strange noise (which new homes are always filled with).
Somehow I made it through, and was I got settled, I noticed I was starting to feel better. My thinking was getting clearer and felt stronger. Getting out of my old, moldy place was clearly an important part of my healing journey.
Neuroplasticity to the rescue
The next step forward came when a friend recommended I try using the Dynamic Neural Retraining System. It sounded really weird, but she let me borrow the DVDs to try it out. The basic idea is that your brain can get stuck in old patterns that can cause all kinds of physical and psychological symptoms. The more you focus on those symptoms, the more those patterns get solidified in your brain. Using the principles of neuroplasticity, your brain’s ability to create new neural pathways, you can actually cause your brain to stop using those old pathways and use the new ones. I was skeptical, but it’s not like I was doing a lot of other things with my time.
Within three days of starting DNRS, I was sleeping better. Within a couple weeks, my thinking and cognition had dramatically improved. I started reading books again, something I hadn’t done in a couple of years. At first it was only 15 minutes at a time, but then I was able to expand to 30 minutes, and then 60 minutes. It felt like my brain had finally woken up from a long sleep.
My mood improved. The semi-frequent anxiety attacks and PTSD-like symptoms were almost completely gone in about two months. I was woke up feeling hopeful, happy, and grateful every day regardless of physical symptoms. I learned I could roll with the physical discomforts associated with my illness, and DNRS gave me the tools to pull myself back whenever I felt like I was falling into negative thought patterns.
When I went to see my doctor three months after starting DNRS, I was filled with hope and told him I thought I was finally over the hump. I felt like I could see a finish line ahead.
Unfortunately, I would have a setback a couple of months later. During a therapeutic massage, I got incredibly dizzy. The dizziness didn’t go away for about two months, and when it finally resolved, my brain felt more sluggish and foggy than it had since before DNRS. I never got back the level of cognition I had during those first three months with DNRS even though I continued practicing for several more months.
The detoxification piece
No matter who I talk to about my condition, the topic of detoxification keeps coming up. Detoxification is important for people with Lyme disease because Lyme bacteria not only produces toxins as they grow and spread, but also when they die. Everyone seems to agree that the reason I’m still not feeling better is that my body isn’t detoxifying properly, so we’ve been exploring this piece deeply. Recently, I had a couple of breakthroughs that have allowed me to start detoxing properly.
First, I began sleeping under a Faraday canopy. There is a widespread belief in the Lyme community that EMFs, such as those from WiFi and mobile phone signals, disrupt the body’s ability to detoxify (among other things). As a techie, I was skeptical about this, because all of these devices are such a big part of my life. However, when you’ve been sick for years and someone says something might help, you will pretty much try anything.
The Faraday canopy is based on the same idea as a Faraday cage, that electrical signals will stay on the outside of a metal enclosure. Sleeping under a Faraday canopy means you’ll be shielded from EMFs in your environment and that, in theory, will allow you reach a deeper, more restorative sleep. We do most of our important detoxing (including brain detoxing) while we sleep, so that’s the most important time to be protected from EMFs.
The first night I slept under the canopy I only really slept for a couple of hours. I woke up in pain and felt awful. I figured it might just take my body some time to adapt to the canopy, so I continued using it for two weeks, at which point I was so sick and felt so awful that I stopped using it. I didn’t know what was going on, but it didn’t seem good.
After talking with a couple of people familiar with canopies, it turns out I was experiencing detox symptoms! Lyme patients generally know that feeling worse can sometimes be a good thing if it means you’re detoxing, and apparently it’s not unusual for people who start sleeping under a Faraday canopy to get really sick at the start as the body starts to detox everything that’s been built up. My doctor suggested I start back using the canopy once a week, and after a couple of weeks to increase to twice a week, and so on. That worked well and after about three months, I could sleep under the canopy five times a week without feeling sick. As an added bonus, I was sleeping more soundly and deeply on the nights that I used the canopy.
The second important thing related to detox was I started using the supplement NAD. Anyone with chronic fatigue has probably heard of NAD as it’s well-known for increasing energy. I didn’t know much about it until meeting a chiropractor who makes it a key part of his practice. He explained to me that people with chronic Lyme disease get so run down, and the body is so stressed for so long, that the cells literally just don’t have the energy to detox anymore. Taking NAD restores cellular energy that is needed to detox. I decided to give it a try.
It took about 10 weeks for enough energy to build up in my body to start detoxing, but I did start detoxing! Not just during the night when sleeping under the canopy, but also during the day. Of course, that’s what you want: constant detoxing throughout the day. Sometimes the detoxing can be a bit too much and I need to adjust what I’m taking, but I’ve been detoxing now for about six weeks and have seen some small improvements here and there.
Where I am now
Unfortunately, I’m still mostly stuck at home most days. My cognition hasn’t really gotten back to the high point I reached while doing DNRS. My energy is also pretty low, so I have to very carefully manage my activities. I’m still mostly lying down after lunch each day, but I’m hopeful that the detoxing my body is finally doing will eventually lead to greater improvement.
On the plus side, my mood and outlook has stayed positive after stopping DNRS! I wake up every day hopeful that it will be better than yesterday, and hopeful that tomorrow will be better than today. It sounds weird to say, but I really do feel like I’m the happiest I’ve ever been in my life. Learning the habits of neuroplastic exercises, gratitude, and positive outlook has been life changing for me.
I still have a very long road ahead of me, but I know I’ll be able able to walk it, even if it’s just one small step every day.