Know Thy Enemy: Babesia

Babesia is a malaria like protozoan parasite that parasitizes red blood cells in host organisms.
Originally a cattle disease, it was first discovered in humans by Romanian Pathologist Victor Babes in 1888. The first US case of human infection was found in 1960 on Nantucket Island.
There are over 100 different babesia species, but only 4 have been found to infect humans so far:

  • Babesia Microti
  • Babesia Divergens
  • Babesia Duncani
  • MO-1 (unnamed strain)

Babesia parasites are transmitted to humans by the bite of the deer tick (ixodes sculpularis), and less commonly, blood transfusion and maternal-fetal transmission. The parasites cause a parasitic, hemolytic disease known as babesiosis. Babesiosis is a cousin to malaria and causes malaria like illness.
*note if you have babesia an interesting side effect is that you can no longer donate blood or organs. ever. I was quite sad to realize this fact.

Female deer ticks at different stages of engorgement
Female deer ticks at different stages of engorgement

The severity of babesiosis infection varies greatly. Some patients experience viral like illness for weeks or months that then resolves, some patients are completely asymptomatic. In patients with no spleen or those that are immune suppressed, the disease can be severe and potentially fatal.

In uncomplicated cases, symptoms begin 1-6 weeks after infection and are non-specific. Typical early manifestations include intermittent fevers, fatigue, malaise, headaches, chills, and myalgias, nausea, vomiting, reduced appetite, depression,  air hunger and hemolytic anemia
Some patients develop enlarged livers or spleens.

At greatest risk for severe babesiosis are the elderly, those with no spleen, those with HIV or other Immuno suppresion, and those with malignancies. These high risk patients have a fatality rate as high as 20%.
Most common severe complications include: Low and unstable blood pressure, altered mental status, severe hemolytic anemia (hemolysis), very low platelet count, disseminated intravascular coagulation which can lead to blood clots and bleeding, and malfunction of vital organs (kidneys, liver, spleen, lungs, and heart).

Co-infection with Lyme Disease or Anaplasma may complicate disease manifestations and predispose the patient to more severe disease.

According to Columbia University, for immuno-suppressed patients and those with persistent signs and symptoms, studies show a positive association between longer treatment duration and a positive outcome. They therefore suggest continuing treatment for such patients for weeks or months until blood smears are negative for at least two weeks. My Lyme Literate Medical Doctor (LLMD) recommends treating until symptoms subside. In fact, in the 8 months I have seen him for treatment, he has not once run a blood test for babesia, Lyme, or any other coinfection. He believes that the tests are so unreliable that they are not worth running. He treats based on symptoms. And treats until the symptoms are gone.

In my case, I have been tested for Babesia Microti many times, but never once for any of the other strains known to infect humans. Isn’t that funny? All those symptoms of a parasitic illness and not a single test for the other strains. My LLMD gave me a clinical diagnosis of babesiosis the first moment he saw me in March and then began treating me for it as my worst infection based on symptoms with mepron and azithromycin.

So far, I am still plagued by chills, fatigue, malaise, headaches, myalgias, nausea, and reduced appetite. Some of my babesia symptoms subsided right away when I began treatment (air hunger) and have stayed gone. Other symptoms get better for a few weeks and then worsen again. Unfortunately, this has been the case for my night sweats, and the last few weeks they have been on an upswing.  After a break where they disappeared for a few weeks the night sweats are back with a vengeance. Every night I wake up soaking wet. Before I began treatment, even the dog stopped sleeping next to me for fear of getting burned. I hope they don’t stick around this time. It is not a fun or pleasant way to live.

I also had severe hemolytic anemia for several years and no type or amount of iron supplement or iron rich food helped the problem. Eventually, a few months before seeing the LLMD, I sought help from a hemotologist for my high white cells and platelets, odd red cell counts, and severe anemia. He gave me weekly iron infusions for several weeks and brought my stores back up again. The flip side of that is that the infusions seemed to fuel the parasites and worsen my babesia symptoms. At last check several months ago, my iron levels were still in range but dropping pretty rapidly. I continue to hope the babesia may be in control enough after all these months in treatment to keep my iron from bottoming back out again.

The terrible news about babesia is that there is no cure. I am not waging war on this parasite with hope of winning by eradicating this opponent. That is simply not possible. The end goal is simply to knock down the parasite load enough that my body can tolerate its presence without it causing terrible symptoms. Tolerable levels may yet be achieved. But the parasite will be with me forever.

deer ticks actual size
deer ticks actual size

When I first got my clinical diagnosis of babesia I found several great blog posts written by Dr. Suzy Cohen, a Pharmacist who’s husband has suffered long and hard with babesiosis. If you want to read more on the subject, I suggest you look up her writings on babesia. Her description of symptoms is quite good. Of particular note? Due to the difficulty in diagnosis, Cohen suggests a slightly different list of hallmark symptoms. She suggests that anyone who has these symptoms and a history of exposure urge their physicians to consider the possibility of babesia infection. Her key symptom list includes:

  • Sweats: Anytime during the day and especially at night while sleeping. (I had a nice break from these recently, but they are back)
  • Thermal Disregulation: Due to mitochondrial disfunction. The feeling that you can’t get comfortable in your own skin. Simultaneously hot, clammy, cold, chilled, and plagued by drenching sweats. (I personally call this feeling like you have ice water running through your veins. Mine improved with treatment until the recent drop in temp outside, which plunged me back into the frozen feeling of thermal dysregulation where I wish I could climb right into the fire.)
  • Headaches: often misdiagnosed as sinus headache and difficult to differentiate from headaches caused by Lyme Disease.
  • Dysautonomia: Due to damage to autonomic nervous system. This includes problems like mood instability, insomnia, depression, anxiety, headaches, feelings of disequilibrium, balance problems, and tinnitus.
  • Heart Palpitations: Could be babesia or Lyme or another co-infection.
    Could be POTS (Post Orthostatic Hypotension)
    (this one was bad for me before treatment started. It’s vastly improved now)
  • Air Hunger: Feels like you are suffocating or someone is crushing your diaphram.
    Can feel like severe asthma, shortness of breath and isn’t alleviated with standard medicine (like an asthma inhaler) This can be the scariest of all symptoms when it is severe. Mine was really awful before treatment but is almost gone now. Before treatment I had customers at work tell me it sounded like I had tuberculosis!
  • Deja Vu: French for “already seen” a bizarre manifestation of babesia that includes sudden random completely out of context visions of life before today. I know that sounds really odd. But you really have to have babesia to find out so you don’t want to know, I promise. Lucky me, I knew exactly what she was referring to when I read it the first time.

 

 

 

2 Comment

  1. Acute Infection (Year 2004):
    Trip to Mexico City. Visited a poor rural area for 4 months. Ate Pork sandwich from street vendor.
    Fever (Felt like brain and spine were on fire.)
    Chills
    Loss of equilibrium
    Vomiting
    Body Aches
    Difficulty Eating
    Diarrhea

    Symptoms went away after two weeks and then the following happened over a long period of time
    Chronic Symptoms (Progressively got worse Year 2005-Present):
    Loss of Breath
    Muscle Weakness
    Heart Palpitations
    Muscles and Joint Aches and Pains
    Unable to enjoy and eat food. Generally uneasy in intestine.
    Major Constipation
    Light Headed-ness
    Dulling of Senses
    Tinnitus – It gets worse every year. There is a severe pressure in my ears now and ringing. Also sometimes my eyes feel blurry and I feel pressure in my head.
    Brain Fog

    Symptoms persisted for 10 years. I was prescribed steroids, antidepressants and other stimulants from psychiatrist that seemed to push me along. I’ve done many stool samples, seen a cardiologist, neurologist, Gastroenterology, and Kidney Doctor (who also checked my liver) and other specialist who could not find anything. I’m confident I picked up a parasite in Mexico that’s hidden in the body causing the remaining symptoms, because all this started after the flu-like infection.
    Treated with Flagyl. Now three main symtpoms remain: Intestinal discomfort, heart palpipations, severe tinnitus (brain fog too but not as bad.)

    Some of the symptoms you mentioned that stick out to me, which I haven’t seen in other infections is the DejaVu experience. I feel this all the time.. I’ll be driving around and immediately think I’m in a different place I was in years ago. Bizarre. I need to go get tested for Babesia antibodies.

    I was definitely curious about the symptom list created by Dr. Suzy, because it matches a lot of what I’ve been through, yet I can’t seem to find those symptoms on a professional medical website. So that concerns me a little. Nonetheless, three of the symptoms that really stick out to me, which I haven’t seen in other chronic infections are: Tinnitus, Eye pressure, and the Deja Vu experience, all of which I have.

    I would love to know the contact info of your doctor. He sounds fantastic treating based on symptoms and it would be great to talk to someone like that if you would be willing to email me his information. Thanks so much!

  2. Hi Benjamin,
    So sorry to hear you are struggling with illness and finding difficulty getting help and a proper diagnosis.

    Unfortunately, babesia testing is notoriously unreliable. That’s why Lyme Literate Medical Doctors (LLMD) diagnose based on symptoms. Even the CDC now says that Tick born diseases should be diagnosed based on symptoms not test results. But mainstream doctors aren’t following that advice. The best way to find an LLMD is through ILADS website at https://www.ilads.org/patient-care/provider-search/ They will give you a list of all of the LLMD’s in your area. The one I saw was in Westchester County NY if you still want me to email you his name I will. The sad thing is most LLMD’s do not accept insurance.

    Incidentally, you mentioned taking flagyl. My LLMD gave me flagyl as treatment for babesia (he said flagyl kills all protozoa (things with a tail or flagella…babesia is one) (this was after many months of mepron) I wonder if your dejavu was affected by taking flagyl?

    I haven’t come across any other illnesses with dejavu as a symptom. Have you?

    Another good avenue for treating babesia is to find an herbalist to help you treat it herbally or doing enough research to treat yourself herbally. I need to write more posts on herbs…I have had some success with them. I chose to follow herbalist Stephen Buhner’s herbal protocols. I followed his protocols after my treatment with my Lyme Doctor and while I am still struggling with many infections, my babesia has been severely knocked down.

    Good Luck figuring out what’s going on and finding some relief.

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