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.


LifeHappens said...

LymeMD, does stiffness occur with lyme? I feel that this is my only symptom left, I am being treated with Doxy at higher doses, for 2 months and is almost my last symptom. Wondering if lyme caused permanent damage, ?

T9im said...

Hi Doc:

My first research with this disease, when my daugher was diagnosed with CFS, led me to Vitamin D3. I have found most Lyme patients I've spoken to are deficient in Hydroxy 125 levels.

Some believe a high level helps the spirochete. I'm not in this camp.

A level below 30 is deficient and it is best to be above 60. D3 is also good for bone health and may help this patients osteoporosis. It should also help her immune system.

I'm currently taking 5,000 IU's a day and have a 70 level (not a current reading, last Nov).

Maybe reading some of Dr. Hollick at the Vitamin D clinic or Dr. Davis on Track your Plaque.

Thanks again for your blog posts.

LML said...

Hmm. Is she still on any medication for the Babesia or did the Larium/Chinese Med kick it? I have Babesiia Duncani and have beem researching Dr. Schaller and Dr. Zhangs approach of using Artemesia (not artemesinin) starting low and moving to a higher pulsed therapeutic dose. Do you know what exactly her Chinese medicine approach was?
Thanks :-)

Erik said...

Does Larium = Mefloquine? If so I would personally avoid Larium unless absolutely necessary due to its awful side effects. Malarone while being much more expensive has far fewer of the bad side effects.

trynee said...
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trynee said...

It has been almost 2 years. Not as long as some, but long enough to kinda ruin my life. Lyme dx was in early fall 2010. Lupus dx was Dec 2010. Now I'm without insurance and the disability claim goes on forever. I would walk on my eyelids for a chance to talk to you - I have thought my symptoms were all related to the lyme for some time. I just found your blog tonight, and this woman sounds so much like me it makes me cry. I have no idea what to do - where to go. There are no Lyme specialists anywhere here.

LML said...

Hi LymeMD -

I am still curious about this case. Did the woman fully recover from the Babesia Duncani? I have searched and searched the Internet for success stories of people who have successfully treated this form of Babesia and I can't find a single one.