Tuesday, May 13, 2014

Lyme from Lyme and Babesia too

People like to hear patient vignettes. Here's one that takes the cake. This is a new patient so I cannot say anything about treatment or outcome. We go back to where it all started.

A young woman from rural Massachusetts has always enjoyed spending a lot of time outdoors hiking and camping. She has had innumerable tick bites over a period of years. Her dog suffers with Lyme disease. A few years ago she went camping in Lyme Connecticut of all places. Lyme Connecticut. Over a period of years she developed a progressive illness. She developed a host of symptoms including:  migratory joint pains in her: elbows, wrists, hands fingers, knees, ankles and toes. A partial list of other symptoms includes: fatigue, poor endurance, rapid heart beats, anxiety, problems with focus and concentration, memory loss, unclear thinking, short-term memory loss, headaches, changes in vision and hearing, loss of coordination, numbness and tingling, trouble fully emptying her bladder, mood changes, anxiety, agitation and depression. She reported a history of night sweats and air hunger in the past only.

A few years ago she had a Lyme test which showed a positive ELISA and a negative Western Blot. This was considered a definite negative. She saw a variety of specialist from New England to New York who variably diagnosed her with fibromyalgia, depression or mixed connective tissue disease.  Lyme disease was not the answer according to the best medical minds from the best medical institutions.

A more recent Western Blot shows Lyme IgM antibody bands 23 and 41.  A C6 peptide test was 2.4. An IFA serological test for Babesia showed a positive reaction to WA1 (AKA) Babesia duncani with a titer of 1:256.

Pictures are worth a thousand words.  This is what her blood smear looks like.


Comments:

A positive ELISA is usually due to Lyme disease.  The other ELISA test usually not done, C6 peptide (which most doctors have never heard of) may provide the answer.   Patients rarely develop IgG Lyme Western Blot bands irrespective of how long they have had the disease --  despite repeated promulgations from the IDSA and the CDC.  Most US physicians have never heard of Babesia duncani.  Last week one of my patients (another patient)  showed a picture of a blood smear (taken by me)  to a  highly trained, university-based rheumatologist. He was captivated by the blood smear so he ordered a test for Babesia divergens.  This is a cow pathogen which has crossed over to humans and occurs in Europe only; it is virtually never seen on this side of the Atlantic. By keeping the parasite named WA1 -- even though the organism has had a proper name, B. duncani for more than a decade it feels like its existence is intentionally being kept from the general population of physicians. This name, which is never spoken, is never mentioned at continuing medical education lectures for general physicians.  

Academic medical experts are so dead-set against the Lyme diagnosis and perhaps B. duncani (since ILADS types always bring it up) -- that even with a history of innumerable tick bites and a history of camping in Lyme Connecticut of all places -- the diagnosis is readily discarded.  After all, there was no rash, Lyme is over-diagnosed and anyway chronic Lyme does not exist. To these experts It is clear the patient must suffer with a "real disease" like fibromyalgia. And so it goes.


4 comments:

Nancy Fisher said...

I have heard that Babesia can be related to blood sugar dysregulation (specifically diabetes or high blood sugar). Can you comment on this?

Nancy Fisher said...

I have heard that Babesia can be related to blood sugar dysregulation (specifically high blood sugar or diabetes). Can you comment on this?

secretdreamers said...

I’m a former PICU trauma RN, athlete and very ambitious woman who had to leave my career in 1990 due to undiagnosed profound illness. 2 years ago after years of intense suffering and being bedridden off and on I had a positive PCR for LD. I’ve had AB tx since via PICC and now Groshong catheter along with heavy metal chelation, colonics, infrared saunas, Candida tx, many thousands of dollars of supplements and so on. I exercise 2 x/week at a spine rehab facility with MedX sports medicine equipment. I have my own hyperbaric chamber and PEMF mat (5 years ago I started a company and that’s how I can afford all of this, I’m almost 64 and have zero financial security just like the rest of us long time chronically ill). I’ve had 80-90% improvement with tx so far.

In September I’m going to have ultraviolet - laser blood treatment. I’ll get back to you on the effects. I’ve never given up that I was going to beat this, even prior to any diagnosis I believed I would be well again someday.

I don’t participate in forums or research extensively on my disease because I find it very stressful and it makes me very sad to read about others suffering – I don’t watch TV or the news either :) I do however read your blog occasionally because I like your style. Thanks for your contribution to the Lyme disease cause.

Danielle said...

I live in Northern VA. I was lucky to be diagnosed with Lyme via standard 2-tier testing. But my doctors (first a GP and then an Infectious Disease "specialist") didn't know what to do after I complained that I would START to feel better at the END of a standard course of antibiotics. Did a PICC for 6 weeks, same thing. STARTED to feel better at the end of the therapy. As soon as it ended, symptoms worsened. Was told "you don't have Lyme". Went to a Lyme specialist- found BABESIA WA1!!!! I have been shouting BABESIA from the rooftops to anyone who will listen ever since!!!!

I follow your Blog from time to time, and I have great respect for you. Thank you for what you are doing.