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Friday, November 3, 2017

A fit middle age woman couldn't walk without severe shortness of breath: problem solved.

She couldn’t walk up the hill anymore. She was an avid walker and had been in excellent shape.  I had been treating her for Lyme disease for about a year. She was doing better, except breathing wasn’t right and ability to walk past the mailbox. 

Of course, we jump on the diagnosis of Babesia. Babesia causes air hunger.  Babesia is associated with the famous triad:  night sweats/fevers – air hunger – episodic tearfulness.

This 50-year-old female, whose job, working in a nursery, made her a prime candidate to get Lyme.  This was her second experience with the monster – dismissed by mainstream medicine. She had suffered with Lyme in the past, never Babesia. Lyme of 9 years ago was better, she thought.  Now she experienced recurrent fatigue, achiness, brain fog and some joint pain and swelling.  She had a happy life and had never encountered depression. She was a little down because of the disease, but not particularly depressed.  She did have hot flashes and night sweats but her family doctor and GYN said it was part of menopause. She had some swelling in her fingers and her family doctor diagnosed rheumatoid arthritis. She knew it was Lyme instead. And she was right.

The Lyme test performed by her Family doctor was IgM positive and she was told she likely had another bout of acute Lyme disease. Her doctor prescribed 3 weeks of doxycycline and told her that was all that was required even though she felt poorly for the preceding 6 months – or more. Obviously not true, it has taken a year to get her nearly back to normal.

I repeated her Lyme test. It was IgM positive, IgG negative. An IgM 34 band also reacted strongly.

Multiple drug allergies made treatment problematic.  She developed an allergy to doxycycline and was allergic to Biaxin and possibly Bactrim.

Most of her symptoms improved with Ceftin, Tindamax and others.

Babesia I treated with Cleocin, which she tolerated, and the usual drugs. Mepron usually works. I start with 2 tsp twice daily because I have found that one tsp doesn’t work anymore.  This didn’t help. I tried Malarone, high dose artemisinin, cryptolepis and the new darling Daraprim. Nothing worked.  Maybe she didn’t have Babesia.

If the treatment doesn’t work, reconsider the diagnosis. With Lyme and coinfections, the diagnoses is a hypothesis (true with or without positive lab tests). The hypothesis is only shown correct when a desired response occurs. My thinking was, she had Lyme and she had trouble breathing, therefore she likely had Babesia. Maybe I was wrong. So, I looked elsewhere.

I sent her to a lung specialist. Pulmonary function tests showed possible small airway disease. Probably insignificant. We tried inhalers to no avail. A chest X-ray showed some old scarring in the base of a lung. A CT was done and now small kidney stones and something in the liver was found. A CT of abdomen is pending.   

I still didn’t know why she was short of breath.

Babesia tends to cause air hunger, qualitatively different from typical breathlessness. Many patients are able to exercise but experience odd, episodic bouts of a sensation of not getting full breath – finding oxygen in the room. Scary. I have seen a few patients present with cough. She didn't fit the typical mold. The shortness of breath was severe, yet unexplained and frightening. She never had problems at rest or what sounded like air hunger.  I thought about Babesia symptoms again:  achiness, muscle pain, headache – usually frontal, depression with or without bouts of crying, fevers, flulike episodes and night sweats and day sweats. The sweats are frequently drenching. Patients sweat profusely after hot showers. Others.

She primarily had trouble walking up hills - or more than down the driveway to the mailbox. Not typical air hunger. She only had trouble with exertion. She had some sweats but was also in the midst of menopause.

Otherwise, she was doing fairly well.

How about the lab?  Negative. Antibodies for B. microti and B. duncani can be obtained through Quest and others. LabCorp stopped offering B. duncani again. I think the test via Quest is as good as others. Please note:  Quest acquired Focus lab, a pioneer in B. duncani testing with published studies. I did my in-house Giemsa stain: nada. I didn’t send her blood for PCR or FISH test available through IgeneX, although this would have been a reasonable consideration.  I have found the DNA and RNA tests have a low yield. Generally, If I can’t find parasites on a freshly stained blood film these tests will be negative as well.

Standard  tests for a host of unknown Babesia species is unavailable. I believe there a lot of unknowns out there.

Mystery species of Babesia? As an aside, a mysterious Babesia has been found to cause severe sickness in African Lions courtesy of local ticks.

OK. The story ends well.  I used to use a lot of Coartem but have shied away recently, convincing myself that high-dose artemisinin is equally effective -  and I thought somewhat safer. 

I have found frequent dosing, such as 3 days on, 4 days off with careful monitoring of liver functions may be required. A single dose, approved by the FDA for Malaria, will not work. 

I added Coartem to other anti-Babesia therapies AND, admittedly to my surprise, she came in beaming the other day – one month after starting Coartem. 

She was walking up hills, 2 miles and breathing well.  And the “menopause sweats” were nearly gone as well.  A happy camper. A happy doctor. 
We know nothing of drug resistance patterns of various species of Babesia. For that reason the most effective therapy varies considerable from one patient to the next. Trial and error. Creativity and combinations are frequently needed. 

Please note:  There is no particular duration of therapy for Babesia therapy. The notion (myth) that 4 months works because that is the life span of red blood cells is completely incorrect.  With the right - effective therapy, positive results may be seen quickly, within days at times, please continue an effective therapy for several months after symptoms abate to avoid recurrence with a resistant organism.
A commonly applied theory is flawed: "just assume patients have all the coinfections and treat everyone for everything" is problematic.  For example, therapy with Zithromax or Clindamycine with Mepron and artemisinin, a common approach and would never have worked. for this patient Further assumptions about the direction of therapy would be wrong as well.  You have to tease out the threads with each patient. 


Unknown said...

When you say you did 3 days on 4 off are you referring to coartem or artemisinin. I know artemisinin is used best this way and I have had a lot of success Using it this way slowly ramping up the dosages up to 400-500mg BID 3 days then 4 off. My question, were you using coartem this way as well? And if so what dosage? I know many use 3 day coartem dosages of 4 BID every 2-4 weeks. Im just about to start coartem and value your opinion more than any lyme treating MD. I've followed every post every blog since you started back in 2008 and have learned so much over the years reading all your blogs and experiences. Keep doing what you're doing!

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