Monday, March 11, 2013

Babesia, chronic daily headache, Lyme tests and Virginia politics

Two years symptom free and now she is beginning to relapse. She did her best to ignore her symptoms willing them to go away -- to no avail. Four years ago after two years of disability, having seen 20 doctors, she came to me for the treatment of Lyme disease. Numerous doctors thought she had Lyme disease but they all ruled it out when the test was negative. There was certainly exposure: she lives in a suburb of Northern Virginia and routinely sees scores of deer running through the back yard, even lying on the flower beds. But she never tested positive. Early 13 band tests showed no reactivity. A better Western Blot showed indeterminate reactivity at the IgM 39,41 positions and now, a 52 band blot from Stony Brook (done prior to the relapse) showed 5 first timer IgG bands. She had 4/5 of the CDC surveillance criteria bands plus -- the 37 band, the highly specific band which can only be gotten from SB. She also had a few less specific IgM bands.

It started with headache, new onset chronic daily headache, other neurological symptoms, twitching and tingling, some joint pain and some brain fog. She really didn't tell me about the night sweats until the second visit. Interestingly, if the Lyme tests were wanting, this was not the case for Babesia. She tested positive for both B. duncani and B. microti. She responded well to Zithromax and Mepron then; I'll see if it still works. We are seeing a lot of resistance to Mepron and having to use other therapies these days.

The fatigue has returned. Her muscles have started twitching again and she can't feel hot or cold on her hands. And --- no headaches or air hunger, but night sweats have started up again.

Her examination confirms signs of peripheral neuropathy.

Since she has lived a cloistered life I don't think she was reinfected. So why did she have both Babesias?. Same tick, different tick? An academic question. We now know -  if we didn't know it then, duncani is much more prevalent than microti here in Midatlantic ground zero-ville.
We have talked about a lot of co-infection with multiple strains of Lyme but not much about multiple species of Babesia. It is still troubling: we don't have a narrative to explain chronic, persistent Babesia.

I have made a conscious decision to keep this blog apolitical --  but...

The bill on Governor McDonnell's desk is important. Friends from Natcaplyme.org are asking you to go to their website and vote. I think the best feature of the bill is that it may open the door for patients to look further. And -- just maybe -- it will educate a few doctors as well.

Babesia relapses just like Lyme. Where-ever the one goeth the other doth surely follow. New onset of chronic daily headaches, not on the radar of neurologists and mainstream medicine, should always raise the question of Babesia. This symptoms can be as disabling as any other Lyme symptoms; and in this case, a young woman lost two years of life because of it. People are coinfected with multiple Babesia species. Maybe, as with Lyme strains, the different Babesia are associated with different syndromes. We know that repeating the wrong Lyme test, the 13 bander designed for surveillance by the CDC is very unlikely to be helpful;  patients and doctors targeted by the new bill in VA need to hear this. And again we see, chronic Lyme can be associated with either IgG or IgM bands or both and the CDC cutoff is arbitrary. The bill is a great start.

6 comments:

Linnette R Mullin said...

Thanks for posting! My doc back home diagnosed me with Lyme, Babesia, and Bartonella. I had a Lyme test. The others were clinical diagnoses. He said the Lyme should be gone after the years of antibiotic treatment I was on. I now wonder if what I'm experiencing is the other two. I don't have a Lyme literate doc here to help me, so I'm at a bit of a loss as to what to do. Regardless, your post was helpful. Thanks!

Natalie Speedracer said...

Regarding Chronic Daily Headache... If a person is lyme positive would you think that babesia is causing the headache rather than lyme or bartonella? What if there is no air hunger or night sweats, but there is joint and muscle pain. Would you still suspect babs?

Rubén Setién said...

Hello Dr. I come from Spain.
Do you know about test for lyme by Infectolab (Germany). Is it confiable?

Congratulations fro your blog.

Natalie Speedracer said...

Also, what is it that causes the headache from babesia? Is it the destruction of the red blood cells causing hypercoagulation? Or is it something else entirely? If it were the Lyme bacteria burrowing into say, nerves, can it cause occipital neuralgia?

WLP Romania said...

Can be babesia present without fever? Thank you in advance for your response.

WLP Romania said...

...And without be seeing in dark field microscopy?.... thx.