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Thursday, March 22, 2012

Lupus and Larium

She is feeling fabulous, the best she has felt in more than a decade. Four weeks of Larium Babesia symptoms quickly return. Larium is restarted and shortness of breath and soaking sweats disappear. Mild aches, pains and headaches remain but are of no consequence. Strength and energy have returned; her brain is clear as a bell and she even plays tennis, which is remarkable. A little weakness on the left remains, but otherwise she is in remission. Treated with herbs extensively, maintenance therapy consists of low dose Western medicines.

We met two years ago. She was disabled. Symptoms included: incapacitating fatigue, severe cognitive difficulties, severe headaches, facial pain and numbness, weakness, "total body pain", low-grade fever and chills, sweats and insomnia, topping a much longer list.

Her history was complex. She presented me with a telephone book like folder filled with consultations, test results, and other documents from an army of specialists. She recalls a tick bite in 1989, initially brushed off, and was soon after diagnosed with aseptic meningitis. Mysterious recurrent episodes of Bell's Palsy occured. Numerous cranial nerve disorders appeared, involving: 6th, 7th, 3rd, 11th and 12th nerves. The diagnosis was mononeuritis multiplex. New onset complex migraine and seizure disorder appeared. An immunologist found low IgG levels and an endocrinologist found autoimmune thyoiditis.

Other prominent symptoms included: Marked, persistent left sided weakness (she is left handed), joint pain and swelling (multiple), pelvic pain and irregular menses, dizziness, loss of balance, decreased visual acuity, dyslexia with an inability to write or read, mixing up words, slow thinking, memory loss, complete disability and a total inability to attend to activities of daily living.

Lyme was considered and she was treated with four one month courses of Rocephin. Then the team of ID docs said this issue had been put to bed. A rhematologist diagnosed systemic lupus erythematosis. This diagnosis was to stay with her for years. Various treatments included, IViG, Cellcept and years of steroids. At times high dose intravenous steroids seemed to help.(The steroids have caused osteoporosis in this 36 year old woman).

After years of searching for a different answer she found an LLMD. Treatment at that time focused on Bartonella. She experienced some modest improvements. Searching further she sought the help of a chinese herbalist. This was more effective but she was still very sick and disabled. She was referred to me for aggressive Western medicine to complement the traditional Chinese approach.

Over the past two years (my treatment) I have treated her with a variety of antimicrobials: Zithromax, Mepron, Tindamax, Rifampin, Doxycycline, minocycline, Larium, amoxicillin, a few others and always plaquenil. She has been on plaquenil for years for lupus and is reluctant to go off it. Unexpectedly, She experienced a powerfull herheimer response with Mepron. Headaches, flu-like symptoms, fevers, sweats amd cognitive problems intensified. It was necessary to lower the dose and gradually ramp up. Ultimately, Larium proved more effective than Mepron/artemsia for Babesia symptoms.

The two best drugs turned out to be Larium and Tindamax.

I believe the synergy of Traditional Chinese medicine and Western medicine in this case was indispensible.

Thursday, March 15, 2012

Case in point

This 30 year old patient was well until 2 months after she had noticed a tick bite on the top of her head. Then, over time, she developed a coterie of familiar symptoms: fatigue, migratory joint pains, both large and small joints, headaches, numbness and tingling, muscle pain, brain fog, memory loss, confusion, trouble recognizing objects and performing mathematical calculations, lability of mood, night sweats, numbness and tingling, itching and others.

These symptoms waxed and wanted in various proportions over a six month period before I met her several weeks ago.(During this time she had been treated by two LLMDs).

To many readers the diagnosis is not in doubt.

So what does the lab say?

Prior Western Blots performed by Labcorp found, IgM band 23 and IgG band 41 alone.

A repeat by Stony Brook found IgM bands, 18,28,41,58,72,93 and IgG bands 58,62 and 93.
Even though Stony Brook identified 6 IgM bands, no 23 band was found. However, the 93band turned up in both the IgM and IgG series.

Both the 23 and 93 bands are considered so Lyme specific that for some ppractitioners either alone can suffice to cinch the diagnosis.

Of note: other bands such as 18 also vary by lab.

This was on my desk today.
I am not promoting any specific Laboratory.

Wednesday, March 14, 2012

Western blot biases

I think I have this one right.

Western Blot kits are either store bought or produced internally. These difference seem to lead to preferential expression of bands ostensibly related to variable degrees of antigenic expression.

Clongen and Labcorp (using the same kit) express more 23 bands.

Stony Brook expresses more 93 bands

IgeneX expresses more 30,31 bands.

Perhaps they are all correct.

I have found this helpful in my efforts to reconcile the different reports.


I will briefly present two patients with Lyme carditis and heart block. The first patient was urgently admitted to the hospital ICU with a heart rate of 18 twelve years ago. While the cardiologist prepared placement of a permanent pacemaker a Lyme test came back positive. A temporary pacemaker was placed and the patient improved. This patient developed an allergy to Rocephin and IV therapy was stopped prematurely. All told, his treatment included two weeks of Rocephin and another two weeks of oral doxycyline. I saw him this week. He is in robust health.

The second patient was not as lucky; I am treating her now. She too developed complete heart block, two years ago. A permanent pacemaker was placed. Her Lyme test was not CDC positive. She went on to develop a host of symptoms. Lyme was diagnosed by another LLMD. She had already failed months of oral therapy when we first met. She has started contemplating disability. She had miserable endurance and a brain that was not working. A SPECT scan showed diffuse hypoperfusion in both hemispheres.

First we treated for Babesia until the night sweats and flu like symptoms abated and then we started an intensive regimen of IV antibiotics, eventually to include 3. Six months down the road her brilliant brain is back. We are both thrilled. (Insurance only covered the first two months; she has gone broke in the process). Endurance still stinks and is ever so slowly improving. Ups and downs - going in the right direction. She still needs long periods of rest for recovery after only minimal activity.

She is half way through the disability process - now what?

A good quandary.