by Jennifer Shea

In 2016, I had a flu-like illness with a sudden onset of neck and back pain. I suspected Lyme disease, so my physician ordered the two-tiered test. It was negative.

Thus began a two-year quest to find the cause of my unrelenting neck pain and a growing list of other symptoms. By 2018, I could barely function.

Fortunately, I found an excellent Lyme-literate practitioner, who diagnosed me with Lyme and babesiosis. Over the next two years, with antibiotics, herbal supplements, and other treatments, my health improved greatly. But I continued to relapse.

Recently my practitioner suggested disulfiram. It’s an old drug that has recently been re-purposed to treat Lyme disease. I needed to know more about it before committing. So, I started reading up on It.

I discovered that in 2016, Stanford researchers screened a lot of drugs currently approved for other uses, to see if any were effective against Borrelia burgdorferi (Bb), the bacteria that causes Lyme disease.

Disulfiram emerged as a highly active compound against Bb grown in lab culture plates. This suggested the drug might effectively treat Lyme in humans.

In 2019, Dr. Kenneth Liegner published a paper reporting on patients with Lyme and babesiosis who were successfully treated with disulfiram. Since then, an increasing number of practitioners have prescribed it for this purpose.

I also learned that disulfiram can cause toxic side effects. I joined several Facebook groups for Lyme patients using disulfiram. I scoured their posts to learn from their experiences–both positive and negative. What I learned there helped me decide to take the plunge and try disulfiram for myself.

Here are two stories of successful outcomes from members of the Facebook groups. Their names have been changed for privacy.

Susan

Susan, 59, recalls many tick bites and isn’t sure which one infected her. However, she began to notice symptoms while attending prep school on Long Island, NY, in 1976. At that time, she was also diagnosed with endocarditis, an infection of the inner lining of the heart chambers and valves.

Over the next few decades, she had surgeries to address abdominal pain and endured many unexplained symptoms. In 2006, her health rapidly declined even more. Her symptoms included flu-like illness, brain fog, widespread pain, and fatigue that at times left her bedridden and wheelchair-bound. She consulted a Lyme-literate physician (LLMD), tested positive for Lyme, and was diagnosed with babesiosis and Bartonella based on her symptoms.

Susan was treated with herbs as well as oral, injectable, and IV antibiotics. Gradually, her health came back to about 80% of her pre-Lyme status. But she would relapse whenever she stopped taking antibiotics.

She started taking disulfiram in 2019 at a dose of 125 mg, gradually increasing to a target dose of 250 mg, based on her weight of 150 lbs. She maintained her target dose for three months then increased to 375 mg for the final two weeks. She finished taking the drug in mid-April 2020, having been on it for five and one-half months in total.

Susan’s symptoms got significantly worse after the first dose. Pain in areas of her body previously affected by Lyme and co-infections intensified. She also experienced insomnia, mood swings, and skin lesions while on the drug.

“It was like a roller coaster with bad days right up to the end,” she said. She hallucinated at one point after discontinuing disulfiram.

However, now that she has completed the course of disulfiram, Susan feels that she’s back to about 95% of her pre-Lyme status. Her brain fog has cleared, her energy and stamina are normal, and her pain and other symptoms are greatly improved. She has some lingering abdominal, eye, and ear pain, but her activities are no longer restricted. She can exercise strenuously and works full-time without fatigue.

Laura

Laura, 54, was bitten by a tick in Rhode Island in 2016. She noticed a bull’s-eye rash shortly afterward. She tested positive for Lyme through LabCorp and was prescribed 21 days of doxycycline, which resolved her symptoms.

In 2017, she relapsed and consulted with a LLMD who also diagnosed her with babesiosis. She was treated with various oral antibiotics for Lyme and with Mepron (atovaquone) for babesiosis. The babesiosis symptoms resolved, but she experienced Lyme relapses every 5-6 months after discontinuing antibiotics.

Upon hearing about disulfiram, she brought information to her general practitioner who agreed to prescribe the drug. Laura had been sick for four years at this point. Her chief symptoms were brain fog, headaches, insomnia, muscle aches, and mood changes.

Laura took disulfiram in regular tablet form beginning at a dose of 250 mg with a target dose of 500 mg based upon her weight of 200 lbs. She felt better immediately, so she rapidly increased to 500 mg on the fifth day but dropped to 250 mg after 45 days as she felt the lower dose was equally effective and she had been without symptoms for the previous 20 days.

She took disulfiram for 66 days total. In addition, she took taurine, ornithine, dihydromyricetin, Alka Seltzer Gold®, sumatriptan and glutathione. She didn’t alter her diet other than avoiding alcohol and fermented foods. (Patients on disulfiram are advised to avoid vinegar, fermented foods, and anything with alcohol.)

Laura had adverse reactions to eating salsa, pickled peppers, and salad dressing–all of which contained vinegar. At times, especially at a dose of 500 mg, she experienced intense headaches, fatigue, dizziness and muscle aches which disappeared at day 60.

When exerting herself, she noticed an odor similar to onions that some report with use of the drug. Laura found it best to take disulfiram at night, to sleep through any resulting symptoms.

At the conclusion of treatment in October 2019, Laura was symptom-free and remains so at the time of this writing. She can now do many activities that she previously could not, including yoga, gardening, sports, and full-time work.

Both Facebook group members state that, although the course of treatment was difficult, it was life-changing. They started at doses higher than those reported by many in the disulfiram for Lyme Facebook groups. Those with less efficient detoxification pathways are more likely to experience toxic side effects, so caution is warranted.

As for my story? I’ve just started taking disulfiram, so it remains to be written. But it’s encouraging to know that disulfiram may hold promise for the treatment of some patients with Lyme and babesiosis.

Note: This information is not intended nor implied to be a substitute for professional medical advice. Always seek the advice of your physician or other qualified healthcare provider before starting any new treatment or discontinuing an existing treatment. Talk with your healthcare provider about any questions you may have regarding a medical condition.

Jennifer Shea lives in Longmeadow, Massachusetts.

References

1. Pothineni VR, Wagh D, Babar MM, et al. Identification of new drug candidates against borrelia burgdorferi using high-throughput screening.Drug Des Devel Ther. 2016;10:1307-1322. doi:10.2147/DDDT.S101486
2. Pothineni VR, Wagh D, Babar MM, et al. Screening of nci-dtp library to identify new drug candidates for borrelia burgdorferi.J Antibiot. 2017;70(3):308-312. doi:10.1038/ja.2016.131
3. Liegner KB. Disulfiram (tetraethylthiuram disulfide) in the treatment of Lyme disease and babesiosis: Report of experience in three cases. Antibiotics. 2019;8(2):72. doi:10.3390/antibiotics8020072
4. Kinderlehrer DK. Many patients find disulfiram a “game-changing” Lyme treatment. LymeDisease.org. https://www.lymedisease.org/disulfiram-kinderlehrer-2/. Published November 20, 2019. Accessed May 21, 2020.

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For more:  https://madisonarealymesupportgroup.com/2020/05/26/potential-patient-reported-toxicities-with-disulfiram-treatment-in-late-disseminated-lyme-disease/

https://madisonarealymesupportgroup.com/2019/11/19/if-disulfiram-is-the-cure-for-lyme-disease-should-it-be-prescribed-to-all-lyme-disease-patients/

https://madisonarealymesupportgroup.com/2019/06/03/disulfiram-in-the-treatment-of-lyme-babesiosis-3-case-reports/

https://madisonarealymesupportgroup.com/2019/07/14/disulfiram-breakthrough-drug-for-lyme-other-tick-borne-diseases/

https://madisonarealymesupportgroup.com/2019/07/26/is-disulfiram-the-magic-bullet-for-chronic-lyme-disease/

https://madisonarealymesupportgroup.com/2019/10/15/disulfiram-psychosis-update/

https://madisonarealymesupportgroup.com/2019/10/27/disulfiram-psychosis-update-2/

https://madisonarealymesupportgroup.com/2019/09/18/dr-liegner-interview-on-disulfiram/