Will There be Cake?

I have Lyme. I’d like to not have it anymore. I also just want cake.

Blasted Babesia

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.

kidding me

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.

b. microti & b. duncani

Shown: B. Microti and B. Duncani, two of 20+ different strains of Babesia infecting red blood cells.

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. 11350407_497174050430522_2727604717394673942_nOur 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.

  • BABLO, as I previously mentioned, moves super slow in the chronic form. Which, if you are sick with chronic illness and are suspecting Lyme or BABLO, you may take away at least this one comfort from my post. My present to you.
  • Many symptoms are located in the brain and head. BABLO should be considered with any atypical or exaggerated symptoms here. I will get in to details later. Patience.
  • Can we talk about headaches? Pain at the base of the skull, front of the skull, or behind the eyes is classic babs. Also, the sensation of pressure without pain. Which, I experienced on the regular along with the above headache descriptions for years. It’s super weird to feel pressure pushing out from your brain against the inside of your face. Would not recommend.
  • Predominate brain symptoms are cognitive decline and memory processing. This is SO me. Is this SO any of you? BABLO made me an idiot. I feel like D only knows me as an idiot. I promise D, I used to be smart and had the memory of an elephant.
  • BABLO just doesn’t want to make you dumb, it also wants you to be sad/mad/everything in between about it. Mental health symptoms and disorders can also trace their origins back to this bug that the devil made.
  • Sweating can be a symptom and is often the most touted BABLO symptom of them all. But I think that is misleading. Sweating is definitely a Malaria symptom, and it is definitely a BABLO symptom, but it is not the be-all-end-all diagnostic tool for this disease. I rarely had sweats. FYI.
  • Possible severe temperature instability such as hot to cold in the blink of an eye, but usually the predominant status is chilling, freezing, can’t-feel-my-fingers cold. Are you reading this with 5 blankets on? Do you know you will throw them off while panting 2 minutes later but not throw them so far as to not be able to pick them up again in another few minutes? Hey-oh!
  • Pain is not really a BABLO issue for most, and if it is, it is usually limited to wrists and hands, ankles or feet.
  • Heart symptoms and BABLO got married in the beginning of time. No foreseeable chance of divorce. Autonomically mediated tachycardia, PVC’s (heart skips or double beats), frequently at night, but with unremarkable cardiac evaluations. I dislike the heart/BABLO marriage more than Kim and Kanye. I’m sick of it.
  • Other autonomic nervous system issues (dysautonomia) causing shortness of breath (which can present as feeling like you are straight up going to die to just frequent yawning) or orthostatic hypotension. Know someone with POTS? I don’t call it POTS anymore. I call it BABLO.
  • BABLO symptoms are almost always aggravated or become more pronounced by premenstrual syndrome, menopause, or andropause.

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 

  • Disabling problem with short-term memory and concentration
  • Progressively disabling memory
  • Difficulty with direction or getting lost in familiar places
  • Difficulty with simple linear thinking
  • Difficulty with numbers or words
  • Severe depression
  • Fear, OCD, anxiety, or panic disorder
  • Pressure sensations in the head
  • Various sensations in the head such as hot spots, numbness, crawling, crown tenderness, or things you can’t explain
  • Abnormal metabolic labs specifically kidney and liver function.
  • Swollen liver and/or spleen.
  • High MCV (mean cell volume in your standard CBC lab)
  • Hypothalamic dysregulation – any disruption, hormonal imbalance, or symptoms relating to adrenal glands, sex glands, and thyroid glands, as well as symptoms involving body temperature, emotions, growth in children, milk production, salt and water balance, sleep, or weight and appetite.
  • Severe sleep disturbance, trouble falling asleep, frequent waking, difficulty falling back to sleep, or early wakening.
  • Anything from weird and vivid dreams to full on night terrors.
  • Temperature intolerance, either hot or cold.
  • Occasional fevers, but usually incapable of such.
  • Sweats, sometimes drenching and usually at night. BUT, can be any time of day.
  • Fluid imbalance, either over-hydrated or dehydrated.
  • Appetite swings, can’t get enough or no appetite at all.
  • Many report a dry cough
  • Many report a constant feeling of tipsiness or feeling drunk.

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.

giphy (3)

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.

MOLD.

giphy (4)

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19 comments on “Blasted Babesia

  1. Inesse D Bueneman
    June 16, 2017

    Who was the doctor that helped with your babesia? I am looking for one to help my little sister.

    Like

    • tarathackeray
      June 16, 2017

      Joseph Jemsek in Washington DC. Best of luck to you and your sister!

      Like

  2. Meema
    May 23, 2017

    While I kind of really really don’t like you for giving me full on panic attacks while reading I do also really like you for your honesty and humor. I’ve had Lyme for years and waged my good fights and heroic measures to go on try to be a better person who lives in gratitude and love. But I have to be honest now that I have become infected with Bablo I look back at Lyme and smile that goofy school girl smile knowing that Lyme was simply training for its evil cousin Bablo. I don’t have words to describe the experience other then to say I have a lot of respect for the fact that you did treatment for a year!! I’ve done two months and had to quit. I’d rather cohabitate with Bablo then try to kick him out again right now. He was mean and very anger when I asked him to leave and I just don’t have the energy right now. Praying for the right Doc soon. Thanks I think for your words, reality is sometimes hard to hear.

    Liked by 1 person

  3. Valerie
    December 21, 2016

    I ran across your post here while researching Babesia symptoms. I am doing a Babesia Des bio protocol right now and it is killing me. I literally feel like I am constantly drunk. Thank you for sharing your journey with this as it helps me to not feel so alone. I know how you feel about the cake. I miss it SO much!

    Liked by 1 person

  4. J
    June 6, 2016

    Can you share who your doctor is? Just being on Cryptolepis isn’t enough to rid of babesia?

    Like

    • tarathackeray
      June 6, 2016

      Dr Joseph Jemsek. Babesia is typically very stubborn. What works and timelines are different for many of us, but for me personally it took two years and five different medications (often stacked) to get it under control. Best of luck to you!

      Like

      • J
        June 6, 2016

        Thank you! How would you say you are feeling now? Have your heart symptoms improved since treating?

        Like

      • tarathackeray
        June 6, 2016

        I am about 80% better after almost 2.5 years of treatment. A huge accomplishment considering how sick I was. My heart symptoms have dramatically improved, especially recently.

        Like

      • Julie
        February 9, 2017

        I cashed out my retirement plan to go see him once, met the PA, and they put me on a protocol that i was allergic to, with the statement that “well maybe you won’t have a reaction? Call if you do.” so I wasn’t so impressed. Also, how on earth did you afford the IV abx? They said it would be upwards of $50K.

        Like

  5. Pingback: Herxing on Alinia and The Cake Lady tells us about BABESIA. | The Lyme Bean Chronicles

  6. bloggerlenny
    February 2, 2016

    You are a blog GODDESS. With cake. I started to copy a few thing you said to my blog (My 15 & 18 year olds are at war with BABLO right now. The 15 year old herxing after 5 days on Alinia). Anyway… I have copied and pasted and highlighted and commented and Tara… THANK YOU. xo

    Liked by 1 person

    • tarathackeray
      February 2, 2016

      Blog goddess is a bit overstated, haha. But thanks so much. Bablo is a tough one to kick. But so worth it when you finally do. Wishing your daughters the best!

      Like

  7. Lyme Jewel
    December 23, 2015

    Thank you so much for your post. It has been a blessing to me. I have been fighting Babesia and thought I was winning but it hit me so hard this week I went to the ER confused what was happened to me. They found nothing!! I came home and found myself in your blog. Thank you for reminding me that I already knew what was wrong, I just forgot.

    Like

    • tarathackeray
      December 23, 2015

      You’re so welcome! It such a tough bug to be free from! Many hopes for a quick recovery for you 🙂

      Like

  8. Richard
    December 7, 2015

    Ran across your article while looking to see if increasing your body temperature will have an effect on Babs. Funny I also just read Schaller’s July 15 article. I feel for you like most can’t as I have the same crap you have. People that eradicate babesia (or at least get symptom free) seem to be similar to those that win the Powerball. Its a real person just no one you’ve ever known.

    I’ve been struggling with Lyme and Babs for over a year and while I’m better the constant medications and switching up and around and not knowing what is causing what is mind boggling. You never know one day to the next how you’re going to feel. A humbling thing for sure.

    I hope you are doing better these days.

    Liked by 1 person

    • tarathackeray
      December 7, 2015

      So true. Babs is such a stubborn bug. I am doing much better these days. It works, the madness. Just keep chipping away at it.

      Like

  9. Pingback: Bah Bah Bah, Bah Bartonella | Will There be Cake?

  10. Heather Hart
    June 29, 2015

    Oh my gosh TARA!!!! NO!!! I hate Babesia! Ok…as for mold, call Pure Maintenance. I can get their number if you need. They are highly recommended by Dr. Wright’s office in Provo and my parents just had their house cleared. Really great! And the reason we moved McKaeln to their home so she can recover in a mold free environment. Prayers are with you!

    Liked by 1 person

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