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Saturday, November 26, 2011

Lyme labs and babs

A 22 year old female had a tick bite with at rash at age 5 (recalled by mother). Her pediatrician treated her for 3 weeks. No symptoms recalled. At age 10 she had another bite, treated the same way, no problems. At age 12 she found herself not feeling quite right. It started with vague aches and pains, loss of energy. Her pediatrician diagnosed growing pains. She still did not feel well. Her concentration at school lessened, straight As were replaced with Bs. Her pediatrician diagnosed pre-teen hormones and prescribed reassurance. An avid athlete and enthusiastic basketball player, she collapsed on the court at age 13. The cardiologist and neurologist gave her a clean bill of health.

Her state of well being fluctuated. She had good and bad days, good and bad months. High school was a struggle. She had little time for friends or extracurricular activities. She started going to sleep at 7:30 and having a hard time waking up. She maintained her grades, B+: memory, concentration and focus were poor.

At 16 her pediatrician referred her to a psychiatrist. A diagnosed of depression made she was started on Zoloft. Maybe it helped; maybe not.

She finished one year of college but had to drop out. She had more memory problems, fatigue, joint pains, headaches and other symptoms.

Her mother asked her doctor to do a Lyme test. The test showed a negative ELISA and a positive Western Blot with a 41 IgG band and 41 and 23 IgM bands. The ah ha moment. She was treated with doxy for a month. Didn't help. The infectious disease specialist had nothing to offer. A friend referred her to me.

A repeat Lyme Western Blot 6 months later showed now only a 41 IgG band. The co-infection panel was negative.(I later noted that the B duncani test had not been done).

Her symptoms were typical in my experience for chronic Lyme: fatigue, brain fog, cognitive problems, numbness and tingling in the extremities, headaches, neck pain, muscle pains, migratory joint pain of both large and small joints and prominent depression.

She was treated with an aggressive anti-Lyme regimen. She felt worse over the next two months. Two months later a new symptoms emerged: profound night sweats, air hunger, flu-like symptoms with low grade fevers. A repeat round of lab tests showed a positive titer to B. duncani at the lowest cut-off point. Anti-babesia therapy was started. She had prominent nausea and Mepron intolerance. Zofran was needed to manage the nausea. Over time she began to feel better.

A new Lyme Western Blot from a different laboratory showed 58 and 41 IgG bands and a 41 IgM band. There was a partial reaction at the 23 band.

She continued to improve over the next six months. However cognitive problems were slow to respond. Intravenous treatment was discussed. There was an insurance snag. PICC never placed. Two months later she seemed to be better nonetheless.

A year into treatment she is doing pretty well. After a year at home she is back in college doing fairly well. Symptoms, especially night sweats quickly relapse off Malarone. Still a problem.

Follow up LabCorp testing, including B. ducani was negative. We were specifically looking for a positive Lyme test for insurance, not clinical reasons.

An additional Lyme Western Blot was sent to Stony Brook. This test showed: 41 and 60IgG bands and 18,35,41,72 and 93 IgM bands. I thought this was a definite positive.

Clinical note: The odd Babesia scenario has been relatively common in my practice. Initially the patient denies any symptoms suggestive of Babesia. Babesia symptoms only become prominent after Lyme therapy has been started, as if the Lyme Herx somehow awakens the sleeping dog of asymptomatic chronic babesiosis. The two players seem to act together.

Lab comments:

My confidence in Western Blots is waning. Different laboratories frequently come up with divergent results - not even close.

I am sure this patient has a form of babesiosis. Still, one laboratory I use frequently turns up positive results for B dunani at the lowest cut off point, frequently in patients who would otherwise show a negative Lyme/co-infection panel.

Could the reported "WA1" IgG antibody actually cross react with a different organism. Or, are there a lot of false positives? Dr. Fry suggested this may be a cross-reaction to a non-Babesia protozoan which he has identified.

In truth, sometimes I order a lot of Lyme related tests searching for the positive that might justify IV therapy if anyone is looking.

Another lab's Western Blots would have undoubtedly showed different results. Maybe its best to look at Lyme Western Blots from several labs if it doesn't break the bank.


5shoes said...

(FYI 4 people in my family have late stage Lyme).
You commented above "The infectious disease specialist had nothing to offer". One thing that has really baffled me in this whole Lyme issue is the complete failure of the Infectious Disease docs to jump on board. This should be there baby, they should have seen it coming, be up on treatment, etc...
Another issue that has baffled me, after years of the usual run around between different docs, is the complete lack of interest in any investigative interest on there part. If you dont care, go do something else...After years of hitting our out-of-pocket limit, basically we figured it out ourselves, and have now seen 2 LLMD's, been treated for months, and on the road to recovery.

A.i.R said...

Hello Dr.
I have a few questions for you.What type of doctor are you? Llmd? Infectious disease?
I ask because out of desperation I am trying to find help.I am 20 years old and have had an overall healthy past.I live in md Four years ago is when I got sick.Well atleast that is how far I've been able to trace my symptoms back.I never found an Em. I do however have eczema and remember having an unusual episode on the small of my back.I was ignorant to the.fact that lyme is so devistating.This past September my blood test for lyme came back positive.I believe it was the elsia test.After several Er visits and more test, it continued to show positive.I have been on two types of oral antibiotics since then , which was almost four months ago now.I have been to multiple neurologist, rhumetologist , infectious disease specialist, hospitals Nd upcoming appointments for the Cardiologist and hemotologist.After paying tuition, I was forced to withdraw from all my classes and have a very difficult time working.After the most recent western blot test came back as having a presence of lime, but overall negative , every one has thrown in the towel.Every doctors answer seems to be, that its just stress.I honestly believe its not.My symptoms are the worst they have ever been with new ones arriving each day.please if you have any information that would pertain to my post , contact me. Thank-you. or 301-237-9518 or

Sandy said...

Thank you so much for your blog! I just recently started readng and am learning a lot.

What is air hunger? It sounds a lot like something I've been experiencing for years and have been describing to docs (non LLMDs) for years, and everything thinks it sounds year.

Also, do you ever test for Borrelia Hermsii? I recently saw an infectious disease doc for years of disabling and debilitating symptoms and have tested positive for that. It's supposed to mimic Lyme, but there is so little info on it. This is not something i've heard mentioned before.

mb said...

RE: Several different labs.
My son's LLMD, prominent in the field, ordered Western Blots from: Clongen,Quest, IGeneX.
I think he had pressing need to document his treatment.