I have Lyme. I’d like to not have it anymore. I also just want cake.
So things have been going… okay…
I cheated on my Lyme diet. Yes this is confessional. I had two pieces of cake. Really delicious chocolate wafer cake with nutella whipped cream that I made myself and I was doomed from the start. I could have stopped at one piece but in the face of it I just forgot that this could… turn out poorly for me and I just ate it like a piranha. That’s a lie. I knew I was in for abject horror later but I couldn’t do anything about it after the first bite. It was cake guys. You know me and cake. I had held out for cake for two years. It was a good run. Now I hit the reset button. Darn. It would had been really impressive to say three years. Or more. But anyways, thirty minutes later my lips and half my face is burning and I’m wracked with restless agitation. By the time I went to bed my spinal chord and brain feel like a low-level current of electricity is running through them constantly and I start shutting down… like struggling to talk and move shutting down. I felt a lot of fear, not that I could do anything about it. Sleeping meds took me away and morning greeting me with a horrible flare. I’m talking Tara went back to her IV days. Oopsbutnotoops.
I know this post was titled about Babesia. I’m getting there. So Tara takes a week to recover from her horrible sugar flare. Then, Tara eats 75% of a chocolate covered custard filled donut.
I don’t learn well from my experiences since Lyme. Why no one smacked it out of my hand I don’t know. Sometimes I need to be helped from myself. So that was nearly a week ago and I finally feel back to baseline. Maybe. Except for some weird rashes. But nobody like to hear about somebody’s weird rash. Moral of the story. Don’t eat sugar. It won’t end well.
So Babesia. I “graduated” from a Babesia protocal back in March. With momentous joy. Babesia treatment is grueling and difficult and never-ending. Since then it seems I’ve had some symptoms returning. At my latest phone consult with my doctor, we felt (well they felt, I just deferred) that this could either be a sign of my lackluster detoxing efforts (self-admitted) or possibly Babesia coming back a little bit. So, guys… I get to go back on the yellow paint again (aka Mepron, aka bring the puke bucket back out from storage). I mean, if it’s babesia, I will swallow a whole bottle right now. But still… sad. So I thought maybe I’d dedicate a post to this horrible infection since A) it’s horrible, and B) I want you to know how horrible it is.
In an article titled “Advanced 2015 Babesia Care: Profound Testing Defects and Preventing Disability and Death” (link) authored by prominent Lyme Physician Dr. James Schaller, MD, and Kimberly Mountjoy, MS, Babesia is described as “one of the most deadly tick infections on earth”. So, move aside Lyme? It is not a bacterial infection, but is actually considered a protozoa (parasite family) almost identical to that of Malaria, but significantly harder to treat. It infects the red blood cells but can also be found in bone marrow, tissue, and hiding under biofilms with the rest of Lyme and company. It replicates slowly, often not producing symptoms until years after exposure and long in to it’s chronic form.
It has an entirely too long list of symptoms, with links to potentially fatal conditions such as renal failure, hemolytic anemia (red blood cell destruction), dangerously low platelet counts, and severe coagulation problems which can then lead to blood clots and bleeding, organ failure, and death. Babesia has also been linked to stroke, and heart and brain infarcts (localized area of tissue death due to loss of blood supply). Doctors, (doctors well versed in Babesia infections that is) are also finding a link between Babesia infection and the development of blood eosinophil (a blood cell) cancer. I’m so happy to have this inside me.
Testing for this blood parasite is dismal at best. According to Schaller’s article,
“Almost all direct testing is 95% inaccurate with the exception of IGeneX [specialized lab in Palo Alto, CA], which detects Babesia approximately 25% of the time if you perform full testing of Babesia microti and Babesia duncani antibodies, PCRs and a FISH test. This 25% percent is approximate and comes from eleven years of our own patients and our consult patients, who were tracked very closely on Babesia infections. Initial testing by over 100 physicians and our repeat testing yielded this percent in the absence of meaningful new exposures. Also, Babesia is routinely missed in slides by specialty laboratories”.
Physicians trained in the diagnosing and treating of tick-borne illnesses still rely on clinical presentations more so than serological testing, as with Lyme, in the diagnosing of this far too common illness. If any of this isn’t a bit scary enough, you don’t have to be bit by a tick to get Babesia. Our nation’s blood bank may be full of it. Your nation’s blood bank may be full of it. Because they don’t screen for it. Even the CDC admits you can get this horrible illness from a blood donor, as well as congenitally. Of course they will also downplay the affects of the illness as well as exclaim it is an easy fix. Tell that to the traumatized father who emailed me last year with the story of how he almost lost his previously healthy son in his early 20’s to Babesia. Tell that to the paramedics who had to life-flight him to a major hospital after he collapsed. Tell that to his doctor who had been treating him for Lyme for nearly a year already. End rant.
So what are doctors looking for if lab testing is such a crapshoot? When does one consider Babesia? What should give you reason to raise a suspicious little eyebrow over all of this? Don’t worry, I got you! Because of the many strains known and unknown of Babesia, let’s refer to them as Babesia-like organisms (BABLO). It’s easier to type, and frankly I’m quite angry at Babesia right now and don’t feel like repeatedly typing Babesia.
So, if that got your attention. If you feel like ‘hmm, yes maybe I see myself somewhere in there. Or if you are pale-faced and freaking out about blood cancer and renal failure now, I can go in to more detail. I’ll do that for you. I will. After scouring the internet, after reading symptom list after symptom list, after compiling the most scientifically-based ones that had data to back it up, I present to you this list. You may one, a few, or all of them. None of which are positively indicative for a BABLO infection, but should be discussed with your competent Lyme physician before you go all crazy. But going a little crazy if you have most of them is a normal response. Remember how we talked about how bad BABLOs are? Remember?
BABLO SYMPTOMS – specific
So, can I just tell you? I have or have had every single one of these symptoms since becoming sick. Can I also tell you? At the beginning of my illness, when I went from normal me to deathly ill me in the space of 24 hours, every single one of these aside from sweating and fever (I believe I was incapable of both at the time) were my most severe symptoms. All but two. I mean… slam dunk right? In fact I don’t know if I can name a symptom I had that was outside of this bullet list. To this day I believe a BABLO has been more severe for me than Lyme. And I don’t expect this bug to ever fully go away, and I don’t expect it’s numbers to shrink inside me without absolute war. Last April ’14 to April 15′, the bulk of my previous Babesia protocol, was WWI for me. I really hope that I don’t have to experience a WWII. It’s basically my current nightmare fuel.
Dr. Schaller goes on to list effective measures of treatment, which, can still be difficult to tolerate, bugs build up resistance to, or frequently, as I’m learning, treatment often must remain open-ended. A 2015 review of current accepted treatment methods for BABLO were found to have many flaws, which Schaller lists in his previously linked article and I shall not. I will, however, apply my stamp of approval on his most important findings:
A) No single recipe exists. Patient and Doctor must work together on any course of treatment based on patient’s response.
B) I will direct quote from Schalller: “we believe Babesia is so dangerous and disabling in the long-term, that at least three direct Babesia killers should be used before someone is considered ready for the end of treatment.”
During my WWI, I was on a Babesia-protocol for 11 months. During that time I worked up to the point where I had five medications for this organism stacked. Effective medications for BABLO include: Artemesia Annua, Coartem/Riamet, Atovaquone (Mepron or Malarone), Alinia, Synthetic garlic (be aware, this will also kill other Lyme and co too), Mefloquine (most side effects), and Essential Oils, which need to be used with extreme caution as they can kill human cells too. Other notable medications include Daraprim and herbals included in Dr. Buhner’s and Dr. Zhang’s protocols.
It is interesting to note that Hyperbaric Oxygen Therapy (HBOT) did nothing in study funded by Schaller where subjects received 111 to 112 doses at 2.4 atmospheres for 90 minutes. Their lab results (direct and indirect) or clinical presentation showed no change. In the same vein, those lovers of Infrared Saunas as a means to kill infection aren’t doing themselves any favors, according to Schaller. While saunas are great for detox, raising your body temperature is an ineffective way to kill BABLOs.
So… Babesia… babesia… starting Cycle 17 I will be once again picking up my weapons and fighting Babesia, along with continuing my Bartonella protocols. My regression has only been minor, and to be honest, I was given an extra week off meds to detox this time and it really has helped me feel better. So I have a good outlook. But just about that. In other news, my cold storage room in the basement flooded last night and now I’m convinced I have a mold problem. You can’t say the word mold around a Lyme patient. You just can’t.