Some good news. About a year ago, in the thick of my battle with Lyme, I videotaped a science-themed event at a research institute in Boston. About 24 hours after this event, I had an "episode" where I thought I was either losing my mind or dying or both. You can read about this "episode" in greater detail in my blog entitled LYME BRAIN but to sum it up briefly, it felt like my brain was completely short-circuiting. I would look at my Facebook and see posts from friends but I would have no idea who they were. My brain couldn't connect how I knew them. I also had weird deja vu sensations where everything I did seemed "familiar", like I had already done it before. Or, in other words, it was like everything that happened in the present was being remembered as something that already happened in the past. So weird. It was seriously like a taste of dementia. This "episode" triggered a downward spiral that lasted for a few weeks, up to Halloween, where I seriously thought that my body was gradually shutting down, little by little, and by Halloween weekend I was absolutely convinced that I was going to die. I have a vivid memory now where I return a book or DVD to the local library, I'm feeling so weird and awful, and then I drive home and I have this thought in my head that it's the last time I'll ever drive this familiar route home ever again. There was a 1990s-era song by Primitive Radio Gods playing on the car radio called "Standing Outside a Broken Phone Booth with Money in My Hand". The song had never done a whole lot for me in the past but, as it played in that particular moment, it sounded so powerful to me. The song sounded like something a man wrote and sang knowing he was about to die. So, to me, the song was essentially the sound of me dying. It was a strange, sobering, humbling, sad, depressing but somehow beautiful moment. It's so hard to put the experience into words but it felt like everything that I thought mattered in life or everything that I ever worried about, in the end, didn't matter...because this was my unavoidable fate anyway: death, right now, at age 35. I guess it's kind of like what that Linkin Park song says: "In the end, nothing really matters." I obviously didn't end up dying, but the experience has haunted me ever since, in kind of a traumatic way but also a good way. I listen to the Primitive Radio Gods song here and there to remind me of how close I got to death. I know most people would probably avoid a song that reminds them of death but, for me, it reminds me of a rather frightening yet beautiful moment in life.
Anyway, this past week, I went into Boston and videotaped the exact same science research event I did as last year. I experienced much fear and anxiety leading up to the day because I thought it may trigger another downward spiral like it did last year. But I overcame that fear and, other than feeling pretty exhausted afterwards, I survived and I didn't have any episodes where I thought I was going to die or lose my mind or both. This is progress.
I thought the guy was a Facebook troll. Some yahoo commented on a post in the Lyme Disease Support Group forum, suggesting that chronic Lyme disease was "all in our heads". This upset many people, including myself, but then he went on to suggest that "chronic Lyme disease may, in fact, be mistaken for herpes." This suggestion only upset people further but then he said to "look it up". Though I thought it sounded crazy, I was intrigued, so I did, indeed, look it up.
What I found was interesting.
There were several articles that discussed the viral component to Lyme, how the disease has been known to reactivate latent viruses in our body, specifically herpes viruses, and these viruses are so destructive that they are mistaken to be chronic Lyme disease.
Now, when people hear the word 'herpes', they immediately think about the STD virus (technically labeled HHV-2) but that is only one of eight types of herpes viruses that can be reactivated with Lyme. In fact, most people have been exposed to at least one of the eight herpes viruses at one point or another during their lifetime. For example, the Epstein-Barr virus, aka, EBV, or what we laymen know as "mono" (HHV-4), is a herpes virus. So isn't chickenpox (HHV-3).
Out of all the herpes viruses, the HHV-6 virus seems to be most commonly reactivated by Lyme. According to an article I found on the Envita website (Envita is a medical center in Arizona specializing in treating Lyme), "The HHV-6 virus is one of the infections found in virtually all chronic Lyme disease patients, a chief contributor to fatigue and other neurological symptoms. Antibiotics do not affect this or other herpetic viruses" (source).
Making things even more complicated, the reactivation of these viruses may not only be from Lyme but also from the antibiotics used to fight the Lyme. As we know, intense use of antibiotics messes with our gut flora to such an extent that our immune system becomes extremely stressed. This provides a great opportunity for latent herpes viruses to become reactivated and wreak havoc on our central nervous system (source). Along with the antibiotics, immunosuppressants like corticosteroids are also largely responsible for reactivating viruses because they suppress the immune system, allowing viruses to come out and have a big party (source). Taking all of the above into account, I can't help but think back to my experience with the strong antibiotic Levaquin, which I took a few weeks before discovering I had Lyme. I was prescribed the Levaquin because I was (falsely) diagnosed with pneumonia (read about all this HERE). I had an extremely adverse reaction to the drug and subsequently was prescribed steroids to counteract this adverse reaction. Did the strong antibiotic, combined with the steroids, suppress my immune system to such an extent that it allowed for certain latent viruses to be reactivated in my body?
After all, it wasn't until I had the Levaquin and the steroids that I was hardly able to walk or do much of any physical activity without feeling horrible afterwards. I've always thought the Levaquin left me with fluoroquinolone toxicity or just killed off so many Lyme spirochetes that I had an overload of neurotoxins poisoning my body (from the die-off). But, now, I'm wondering...have I been dealing with a virus or many viruses all along? Is the chronic fatigue I experience after physical activity linked with viruses?
It's possible, though I should mention that, back in January, I supposedly addressed the viral component of my disease. My LLMD (i.e. Lyme-literate) doctor gave me a strong dose of a viral extract that I took for several weeks. At the time, I thought I just had a flu virus to eliminate or some other kind of virus that, perhaps, tagged along with the tick bite, since all kinds of viruses can be passed along from animals to ticks to humans etc. (source). Did this extract take care of herpes-like viruses or are those viruses so evasive that not even this powerful extract could eliminate them?
Again, I have no idea and, of course, this "viral component" of Lyme disease only further attests to the fact that Lyme is an extremely, perhaps near-infinitely complex, disease.
Sources: https://www.envita.com/lyme-disease/how-is-human-herpes-virus-6-hhv-6-related-to-chronic-lyme-disease-complex http://www.advancedhealing.com/lyme-disease-herpes-virus-connection/ http://www.truthaboutlymedisease.com/phpBB3/viewtopic.php?f=6&t=55 http://www.andreacandee.com/lyme-disease http://www.pannaturopathic.com/viruses-and-parasites/
