Monday, September 30, 2013

Primary Lyme myositis

A 58 year old male referred to me in April, 2013 (by another physician). Symptoms were of 18 months duration. He felt well until one night he awoke with bilateral cervical and pain in both upper extremities. His LMD (local medical doctor) treated him with a course of NSAIDS which was ineffective. He was referred to rheumatologists who diagnosed a frozen shoulder syndrome and prescribed physical therapy which was initially beneficial. (the phrase LMD, although pejorative, is not as insulting as the appellation "provider").

Contemporaneously, he complained of severe fatigue, malaise, recurring shoulder pains and pains involving both legs. He developed pain and swelling in both wrists and ankles. A diagnostic work-up was pursued.

Results of tests:  thyroid functions normal; rheumatoid factor and CCP antibodies negative; ANA elevated titer 1:160, speckled pattern; RNP antibodies, Smith antibodies, Antiscleroderma-70 antibodies, Sjogren's  SSA and SSB negative, Antichromatin antibodies negative, Anti-Jo antibodies negative, Anti-Centromere B antibodies, ANA-D negative, dsDNA negative, Chromatin negative, SSA, scl-7 9 antiDNA topoisomerase negative, Centromere B negative, Jo-1 and nRNP  negative,  HLA B27 negative, RPR negative, Vitamin D normal, CK normal, Aldolase elevated (normal up to 7.6, result 13.8, CRP elevated 29.9. I apologize for some tests I omitted.

A test for Lyme disease showed an ELISA greater than 5, 10/10 IgG bands reactive and 2/3 IgM bands reactive.

A diagnosis of Lyme disease was made and the patient was treated with a three week course of doxycycline, 100 mg twice daily for 21 days. This was not helpful.

An EMG was consistent with a muscle disorder. A muscle biopsy was performed at a major University Hospital. The report read: "Inflammatory myopathy, nonspecific." "This pattern can be seen in dermatomyositis,...other systemic rheumatological disorders such as lupus or rheumatoid arthritis. Clinical correlation is essential."

The patient was treated by his rheumatologist with systemic steroids for several months without improvement. The Aldolase level (muscle enzyme) was unchanged.

The patient was seen by me 5 months ago, after more than one year of diagnosis and treatment from a major University setting, without benefit. Further laboratory testing per me was remarkable for a C6 peptide greater than the assay is able to measure.

I diagnosed primary Lyme myositis, a relatively rare condition in my experience.

Moderately aggressive therapy was initialed with a combination of oral antibiotics.

After 8 weeks the patient was feeling much improved. The pain and swelling were gone. Fatigue was minimal and he complained only of mild stiffness.

After 8 weeks, aldolase ( a muscle enzyme)  was in the normal range, 4.8. The CK remained normal. The ANA was entirely negative, slightly elevated before. The CRP was reduced from about 30 to 3.25(almost normal).

He was last seen at the end of September, 2013. He indicated that he felt essentially normal, especially over the past 3 weeks except for mild muscle stiffness. He denied any constitutional, other musculoskeletal or neurological symptoms and was back to his normal activities.

Repeat Lyme antibodies and C6 peptide are pending, ordered for academic purposes.

Repeat Laboratory testing showed a normal CRP.

Note: A group of rheumatologists did an exhaustive workup covering the academic waterfront for every known rheumatologic disease. The pathology report supported this approach.

The patient had been appropriatelytreated for Lyme disease according to the IDSA guidelines adopted by the American Rheumatological Societies. Therefore, although the diagnosis was not clear and the patient had not responded to appropriate therapy; it was clear the answer was not chronic Lyme disease;  a disease which does not exist as supported by experts in the fields of rheumatology, neurology, infectious diseases and evidenced based medicine based on peer reviewed studies published in the most prestigious journals.

6 comments:

Peach said...

Wonderful doctor! I hope a copy of this patient's full progress and resolution was sent to his previous doctors so they could learn from you.

radicale said...

Why don't you publish this, at the very least in an open journal.

Justin03 said...

Ive had lyme since 1990 and had bells palsy a year after when i was 10.treated for 3 weeks. I was bitten by 4 other ticks in last 10 years with no rashes. For the last 10 years my muscles in legs, arms , neck, jaw all get cramping and morning stiffness and weakness. Each year seems to be getting worse and worse. I have other neurological symptoms but my muscle/tendon issues affect me a lot.
I had muscle biopsy last october from my thigh . Only tested mitochondrial not for toxins or lyme as i was told. Everything was normal except some red naggi cells i think it said. Neurologist tested most everything she could think of in blood. Ive had mri mra of brain nothing seen, mri spinal cord , 3 small neck herniated disks , mild compression. Ive been on oral abx since december and iv rocephin since july and there really havent been any improvements .

I dont know why im not feeling any improvements yet. Llmd says it could take a long time to heal.

Bkays said...

I would love to personally speak to this doctor.
I was diagnosed by biopsy central core disease which was later undiagnosed due to a negative finding for the genetic mutation associated with it. Just last week
I tested positive for Lymes with 5 positive bands and I am extremely curious if my biopsy slides would be of interest to anyone studying the correlation between lymes and myopathy.
Kaysb2@cox.net

Sajad Zalzala said...

I am a family doctor in Ontario - open minded and dabble in "integrative medicine". I had a woman in her 30s come to me with a 4yr history of swelling in the right calf muscle, getting bigger and more painful. Muscle biopsy was non specific and a neuromuscular specialist said it was genetic and she would be in a wheelchair in a few years. We refused to give up and found a case study showing that this could be a rare sign of Lyme. So I ran the standard Lyme test and it was partially positive. She finally talked me into treating her - 3 months on antibiotics and she is cured! I am trying to prove its Lyme - still ongoing (not that it clinically matters, but I might write this case up).

Natural Health News said...

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