Friday, April 25, 2014

The Lyme literate patient (and Babesia)

Babesia ring forms
A 52 year old male from central Pennsylvania presented with a mysterious, multi-system and progressive illness which began 10 years ago. It began with flu-like symptoms, burning eyes, abdominal pain and persistent elevation of white blood cell count. He later developed severe muscle and joint pain, especially involving the lumbar spine. Eight years ago, based on recommendations from Hopkins, he had extensive spinal surgery including an anterior fusion of his lumbar spine. Afterwards the pain intensified and become unbearable.He has been unable to sleep in a bed, only a recliner ever since.  Of interest, a local orthopedist in his community told him should not have the surgery. When he discussed the divergence of opinion with has family doctor he was told, "Who are you going to believe? Hopkins of course." Apparently God ("The John") is not always right. He is now a regular patron of a pain management clinic which readily doles out copious amounts of opiods --  which are ineffective, for this intractable pain.

He now suffers with severe, abdominal pain, unremitting daily headaches and diffuse spinal pain which has spread to his cervical spine. He has hand pain and swelling, numbness and tingling and burning sensations in his hands. He complains of "charlie horses" in his legs, twitching muscles, disrupted sleep, cognitive decline with memory loss, progressive weakness, frequent urination with a recent diagnosis of prostatitis given, loose stools, an lack of energy and of course profound fatigue. The review of systems was significantly positive for shortness of breath and night sweats.

Prior to our meeting he had been treated by another doctor for 18 months with IV Rocephin. The only treatment has been Rocephin.  The physician gradually tapered the dose and frequency of the IV medicine. The doctor told him he (the doctor) understood Lyme disease because a family member had suffered with the illness. The patient was never treated with other antibiotics and never treated for co-infections.The Rocephin had provided a modicum of relief. When this was abruptly stopped (because he had enough treatment) --  he knew the plug had been pulled and he found himself circling around the drain. He was referred by one of my patients.

Blood work for coinfections previously was limited.

New testing showed a Babesia duncani or WA1 titer of 512.  His Lyme WB testing from Stony Brook yielded interesting results. The IgM was called negative with bands: 18, 25, 28, 31, 66, 72 and 93.  The IgG was reported as indeterminate with band 41 and 58 present only. His blood smear is shown above.

My elaborate discussions of West Blots can be found elsewhere.

This patient relayed (incorrect) information given to him by his doctor --  I hear the same mantra every day:  " My doctor(s) told that one  type of antibody shows new infection (IgM I think_) and other shows old infection - I forget which is which." "The doctors said I most have been bittern again and have a new infection."  Newsflash: Lyme does not play by those rules. See my last Blog.

There is difference between a doctor being Lyme aware and a doctor knowing how to treat Lyme disease.  The Lyme was not treated adequately with the appropriate "cocktails" and  Babesia, in this case -- florid, dangerous infection - easily diagnosable,  was entirely missed. Few doctors are able to set up a CLIA approved labs and do Giemsa smears, but a simple antibody test through Labcorp was positive.

When patients ask me if I am a Lyme Literate Medical Doctor my answer is: "Are you a Lyme literate patient? this is what is important."  Unfortunately there is no official certification for a specialty which is not officially acknowledged to exist.  The term LLMD has no real meaning. Anyone can use it.  Patients have to be their own advocates and know as much about the disease as possible.  Learning about the disease is daunting under the best of circumstances and impossible for most patients  suffering with"Lyme brains." Nonetheless, keep plugging away.  Hopefully a friend, family member or spouse can be helpful. 

6 comments:

Jennifer Campbell said...

*Thank you, Lyme MD!* You sound like you may be growing weary of those who are unaware or who were misdiagnosed, but believe me, there are those of us out here, like me, who are going to be shouting from the mountaintops as soon as we feel just a little bit better! I just got a "negative" from Quest on a WB - but a positive on bands 41 and 58. That just makes no sense. I'm originally from suburban PA, too, but have hiked on the Appalachian Trail, etc., and now live in AZ. My sons have "atypical autism", adhd like behavior, immunodeficiency, asthma, allergies, etc. (Can we all just agree that this is Congenital Lyme!?!) Believe me, people are gonna hear about this soon, and somebody is gonna have to answer to a large army of pissed off mothers!!!

Summer Lyme said...

Can a babesia duncani antibody test be used to determine how positive or how active an infection is? I know there is a high likelihood of false negatives, but how useful is a positive and what is the significance of the level of antibodies present? For example, would a result of 1:1024 be indisputably positive when accompanied by symptoms that are typical for tick borne infections yet highly resistant to antibiotic and herbal treatments?

In other words, would a "mainstream" doctor still find a way to dispute a high antibody reading from a mainstream lab even though that reading would prohibit the patient from ever donating blood again?

Kelly E said...

How did you treat his babesia?

Lyme report: Montgomery County, MD said...

Unfortunately "mainstream" doctors would not know Babesia if it hit them on the head. They will not believe the infection is active unless it is seen on a blood smear or the patient has a positive PCR. Symptoms and titer will be meaningless to them. They would not recognize the symptoms in the first place. When convinced it is there they still treat with 3 weeks of Mepron and Zithromax. What makes you think they are more opened minded here than with Lyme disease? Always go back to the guidelines written by Wormser, IDSA, 2006. This infection can be very hard to treat. Babesia treatment is discussed elsewhere in my blogs. I do not discuss the treatment of any particular patient (even though some facts are altered to disguise the patient).

Amanda Parnell said...

Had an infectious disease doc tell me quote "we don't believe in babesia" I was so floored and my brain already pretty foggy I didn't know what to say. I' was a healthy 29 year old who loves to be outside and got a tick bite camping this June that was red and swollen for over a month. I only test "positive" for rmsf so I can't find a doc to take me seriously bc 2 weeks of doxy 100% cures rmsf and my continued symptoms daily fever chills fatigue joint pain horrible night sweats ect. are all in my head bc Lyme and or babesia doesn't occur in ga according to the at least 5 docs I've seen thus far. Your blog gives me hope someone gets it hoping to find someone near me soon that gets it as well

Bruce said...

Without the proof of the blood smear, this man's symptoms could also be attributed to chronic brucellosis. I hope he is doing better now.