Seven years ago a 14 year old boy was brought into my office. He had a distant, far off gaze. This former sports star and honor's student could no longer participate in sports and his grades went from straight As to Ds. This is a case I'll never forget.
He had a quiet, almost eerie "zombie-like" affect. His eyes were blank and vacant. Early on I decided he had profound Lyme encephalopathy and aggressive therapy was called for. I started him on IV Rocephin. One, then two months later, he returned for follow-up care, unchanged. I remember feeling nervous about the case. In the third month I added IV Zithromax. He returned a month later: no change. With butterflies in my stomach I added Flagyl. He returned to the office a month later, month 5 of intravenous treatment. I was amazed. A switched had been flipped: he was back. His eyes were bright and clear. This case left an indelible imprint on my psyche. But after the PICC line was removed I never saw him back. We doctors say he was "lost to follow-up."
My new patient's 21 year old boyfriend said: "Hey doctor do you remember me." It took me a minute, but then I recognized him, my 14 year old now grown up. The bright eyes were still there; he had now referred his girlfriend to me.
His girlfriend is very ill. She limped into my office with a cane. She was suffering with severe daily headaches. A neurologist had prescribed Topomax which seemed to make things worse. Of critical concern at the moment: she had lost 30 percent of her peripheral vision in both eyes over the last three months and the neurologist and eye specialist could not figure out why.
She had been sick for a long time, years. She had a plethora of symptoms. Some of the highlights include: severe fatigue, numbness, weakness, shooting pains, a diffuse chronic pain syndrome, night sweats, shortness of breath, air hunger, back, neck and joint pains, loss of coordination, dropping things, loss of balance, confusion, memory loss, global cognitive dysfunction. Psychiatric symptoms including anger, rage, irritability, visual and auditory hallucinations. She also complains of sudden episodes of paralysis of her face and extremities.
Her neurological examination showed evidence of severe neuropathy and also a loss of proprioception. When I manipulated her big toes she could not tell if the toes were pointed up or down. This is an unusual finding only seen in cases of complex neuropathy.
Another word about her headaches. The pain was throbbing or band-like, behind an eye or across her entire head. The headaches typically occur twice daily lasting 4-6 hours rendering her non-functional. She had dropped out of college and also quit her part-time job. Daily headaches were fairly new over the previous 3 months.
Laboratory tests were remarkable for a positive antibody against B. duncani. Here are some images of her blood smear Giemsa stains. The slides show ample evidence of active Babesia infection. In the third slide below a small bacteria can be seen at the periphery of a red blood cell. This is characteristic of a Bartonella-like organism.
Chronic daily headache syndrome is a relatively new entity on the scene. At least some is due to tick borne disease. It is frequently written that Bartonella causes "ice pick" headaches behind an eye and that Babesia causes posterior headaches with muscle pain. Lyme can cause headaches as well. I think it is usually not possible to tease out the exact cause of headaches in persons suffering with tick borne disease.
My approach to this patient is to treat Babesia but also start intravenous antibiotics. I think Bartonella will need to be addressed at a later point.
PS: The boyfriend doesn't remember a lot about the time he had severe Lyme disease. He does recall walking in and out of rooms not knowing why.
3 comments:
Neat story about the boyfriend and finally getting a post follow-up! I am CDC Lyme positive, undiagnosed for 14 years. I pretty much have a headache every day but am used to it. I am currently experiencing daily, sick, 4-6 hour headaches since starting rifampin (with doxy and zith) a few weeks ago, and there's no getting used to this. Sometimes there's ice-pick pain, but mostly it's an overall band across front/top of head and behind eyes/temples. Eyes also get red/sting, extra-bad fatigue, weakness, brain fog, neuropathy, joint pain, fluish feel. Only way to get some functioning time is to ease up on the rifampin. (Googled and seemed like this was bartonella herxing, but who knows?) I also experience some amazingly clear and energized segments like haven't in years. Doesn't last but haven't been on rifampin for long. Last January, I also went through daily sickening but sharper headaches (sounded like Babesia), and that was when started Mepron.Had to ease up but finally got the herxing to a tolerable level. IV is probably next but scared. Can hardly manage kids and house as it is.
I have morgellons since I got bitten by a tick in 2005. I have tested positive for rocky mountain spotted fever, cmv, epstein barr, hhv6, XMRV, mycoplasma, C. pneumoniae. I have been through alot of treatment, and Clindamycin worked best for years before it stopped working for me. My most effective treatments so far have been 1. Low Dose Naltrexone. 2. Valcyte for 4 months now. 3. Famivr over four months ridded me of night sweats 4. Tindamax beats back the fibers but not permanently. 5. Since I was positive for XMRV, which people dont really believe in anymore I was put on antiretrovirals and THEY HELPED ALOT. Gotta go get a refill of them sometime soon. Also, acidic foods spike my symptoms almost immediately (acid loving organism?).
I do have chronic Lyme, but believe my almost daily headaches may be caused by babesia, after reading what Suzy Cohen, RPh has to say about them. It feels like someone is using an old fashion, turn-type drill on both eyes. I'm very weather sensitive to changes in barometric pressure, bright lights, flashing lights, loud sounds and any type of fragrance or chemical odor. Cigarette smell is awful. I also have various parasites, COPD (never smoked), labile hypertension, mast cell activation disorder, CIRS/mold, hypothyroid, Hashimoto's, systemic yeast, lead toxicity, multiple chemical sensitivity (as described previously), weight gain, extreme fatigue, compound heterozygous for MTHFR, etc.....Despite all the conditions, the eye pain with headaches are the worst. I had a stroke in my 40's and as a result am legally blind in one eye. It's my good eye that usually hurts the worst. I've had two retina tears in it and worry about the ocular/babesia/whatever headaches leading to another stroke affecting my good eye.
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