A possible cure
Over the past few weeks and months, a lot has been happening in what will be someday written about the history of Lyme Disease. The most exciting thing has been the publication of an article about a possible cure. I’m trying not to hold my breath, because so many supposed cures have turned out not to work. I know, I’ve tried some of them. Until I read the article and the news on LymeDisease.org that explained the article, I’d been feeling like I have to go deeper with the coil machine to get more on an even keel. My goal had shifted from cure to a semi-functioning life. I wanted to have more good days where I can do a few things before I get too tired to do anything, and throw in some symptom-free days, knowing that the infections were still there and the symptoms would come back. Now I have the inkling, just the possibility, that I could have a remission or a cure. That is something I’d long given up on after all the antibiotics, the herbal protocols, the TCM herbs, and all the years of coiling. I’ve had the best results with coiling, but it remains time consuming and I never get to stop for more than a few weeks at a time.
So, the cure. It’s called disulfiram. It is normally used to help people who have abused alcohol commit to staying sober by making them extremely ill when they consume alcohol. At least one mechanism of action is know about what the drug does in the human body. There are also researchers looking at other mechanisms that might interfere with tumor cell replication. No one really knows how exactly it kills borrelia bacteria, but from the experiences I’ve read about people taking it, it causes a big herx. It also may cure babesiosis which seems to have gone into remission in the patients in the case study. And it may have some effects on bartonellosis, but patients are making conflicting reports.
I want this cure. I’m currently looking for a local doctor to prescribe it and monitor me through the process. I keep thinking that if the drug works for me, the sooner I take it the better. If it doesn’t work for me, I’ll go back to coiling and make a real effort to understand and use the Spooky2.
The Biowarfare connection
I have long ignored the theories about how Lyme Disease is an unintentional mass experiment in a biowarfare project gone awry. I’d heard of Plum Island and all the conspiracy theories that were going around in the late 1990s and early 2000s when I lived in Connecticut. Once I got sick, I had no attention for the whys and hows, all I cared about was getting better. The more I read about the conspiracies, the farther from them I wanted to stay.
Then Bitten by Kris Newby was published. I had no intention of reading it. But it pulled at my mind. I visit a bookstore most days when I’m out walking the dogs (and trying to rebuild my osteopenic bones) and there it was on the shelf with all the new non-fiction. After a week of staring, listening to an NPR interview, and reading a few reviews, I bought it. It rocked my world.
There is a way that I think about the arrogance of the 1950s, a sense that Americans are smart, humans can make miracles happen through science, and that nothing can go wrong. It was a strange moment in history which, in its own way, allowed a lot of social change movements to begin. But it was also the time when science ascendancy created lots of new products whose problems we are now dealing with, from plastics and pesticides to antibiotic resistance and processed foods. I never thought about what that might mean for germ warfare. I like to think of the big progress in understanding and manipulating pathogens as something that happened in the 1990s, once RNA was understood and could be utilized. I’m so wrong in my science history.
So I read Bitten, which raises a lot more questions than it answers, but shows that the questions about tick-borne illnesses have a basis in documented history. Two of the scary events described were the intentional release of ticks in some places and the intentional tests of infectious agents on human and animal populations. Then I read The Hot Zone by Richard Preston, a book about an Ebola outbreak, which helped me understand the history of pathogen research in the US Army and what biosafety containment is supposed to look like. Then I read Lab 257 by Michael C. Carroll, which is about Plum Island. The most compelling pieces of Lab 257 were the circumstantial bits of evidence that Plum Island was the geographic center of three outbreaks of zoonotic infections (infections that mostly live in animals but can make people sick, too). The description matched the maps in Bitten. The documented breaches in biosafety containment on Plum Island were horrifying, though they didn’t directly address the tick-borne disease outbreaks.
I’m still not into conspiracy theories. But I am cognizant of the things that scientists will do if they think it will help them understand a problem and they won’t get in trouble for it. (The Tuskegee Syphilis Trials are only one long, horrendous, and now famous example.) So I think it is totally plausible that tick-borne illness as biowarfare was something that reasonable people thought would protect them during the Cold War. It is also no surprise that those same researchers would do things that unintentionally harmed the US (and later other countries’) population.
The historic news in all this is that the US House of Representatives has passed a bill that includes a requirement of the Pentagon Inspector General to “conduct a review of whether the Department of Defense experimented with ticks and other insects regarding use as a biological weapon between the years of 1950 and 1975.” (source) The report must inform Congress whether ticks were released as part of an experiment or by accident. Hopefully the Senate will agree to this language in the final bill. What this does is take the rumors out of the realm of conspiracy theory. It creates a window through which the public can find out if all these tick-borne illnesses, which didn’t seem to exist in their current form before 1968, were tampered with by human beings before being released into the environment.
Since last I wrote, I’ve been trucking along with the coil machine. I tried to cheat by coiling for Babesia only twice a day, and that meant that I had relapse after relapse. I’m back to coiling Babesia three times a day. I’ve been suffering migraines (seven since the end of April) and dealing with fatigue. I used the Spooky2 migraine settings which seemed to make the most recent migraine a bit less intense. I stopped using the serrapeptase for a month and a half, but restarted it last week for 5 days. That makes me more tired, more achy, and more in need of coiling (for Lyme and Bartonella, too). It seems like a good idea to kill as much as I can before I take the disulfiram. I also managed to either break or severely sprain my right big toe. As you can imagine, a cure seems like such a good idea…even if it means three months of severe herxing.
Despite the limitations, I’ve been crocheting and going for long walks with the dogs. When I don’t have the dogs, I go for shorter walks with a camera. I’ve been watching the birds nesting in the nearby slough this spring and summer. First eggs, then chicks, then fledglings (if those terms apply to waterfowl). The pied-billed grebes are so cute. They are still in their first molt, but they’re swimming around.