Updated: Jan 15
When my doctor came back from the Lyme Conference and told me this medication was helping Lyme but most importantly Babesiosis, I felt like I had hope for the first time since I was diagnosed a year ago. Most of the babesia research I have done shows that it is an incurable and deadly disease so there are moments where the struggle seems futile. Then chronic Lyme can also become extremely damaging and debilitating over time. I have read quite a few studies that have determined Alzheimer's is actually late stage Lyme. My future has been a bit scary to think about in regards to my health and aging. He told me like most things in the Lyme world that the medication would make me feel worse before I feel better, but for a potential cure I was willing to sacrifice! Although I felt like I was finally managing the illness better, this definitely isn't the life I want to live. I felt fully confident I should take the risk and try it out.
Disulfiram, also known by the brand name Antabuse, is a drug that has been used to treat chronic alcoholism since its FDA approval in 1951. It was originally created for alcoholics as it stops the breakdown of acetaldehyde in the body (the bi-product of alcohol). So as long as you are on this medication and for two weeks after, you cannot consume alcohol. That doesn't seem so difficult, but guess what?! Acetaldehyde is in many foods we consume and you can no longer be exposed to alcohol fumes or alcohol in cleaning and beauty products. Acetaldehyde is actually a toxin that none of us should be consuming but we all do! This is where it makes life a bit more complicated. On top of taking a medication that makes you feel worse, you also have to make a fairly large lifestyle change. But like I said, for a potential cure I am willing to sacrifice and I will try just about anything. From what I have read, it only takes a teaspoon of alcohol to have a severe reaction. I have had a few reactions so far: from someone using an alcohol wipe at the gym, the whiff of somebody's after shave, the smell of someone next to me eating kimchi, and from drinking a tea that had cinnamon in it. After about four sips of tea I became extremely nauseous and felt like I was trying to hold down vomit for about an hour. If you accidentally consume or are exposed to alcohol or acetaldehyde, the side effects can range from:
General “hangover” symptoms
Antabuse was created for alcoholics so how is it linked to Lyme and babesia? Well, from around 2014 through 2017, two labs on opposite coasts—one at Johns Hopkins University and one at Stanford—were testing 4,366 FDA-approved drugs to identify an existing drug that worked against “persister” forms of Borrelia burgdorferi (Bb), the bacteria that causes Lyme disease. Of the over 4000 drugs screened for activity against Bb, Tetraethylthiuram disulfide was the top candidate. In March 2017, Dr. Kenneth Liegner had a patient request to try Disulfiram after watching a presentation about it's success with Lyme in vitro and that, I think, is where the first clinical trial began. His full research study based on three patients is available here. He now has over 30 patients on this treatment, and he is impressed with how highly effective it is for both Lyme disease and babesiosis. Since disulfiram has been shown to kill malaria in the laboratory, it is not surprising that it would also be effective against Babesia. From what I have read so far, the mechanism of disulfiram as an antimicrobial is still unclear. Some scientists have hypothesized that B. burgdorferi or Babesia may have an enzyme similar to acetaldehyde, but they have not been able to find one yet. Others think that the complex formation of disulfiram and metal ions that cause the death of cancer cells may also inhibit bacterial growth. Dr. Liegner has found that many patients can stop the medication after four to six months and will continue to stay in remission. It is recommended to check liver tests periodically, but disulfiram has a relatively low risk profile and few drug interactions. There are some potential side effects though: Symptoms of encephalopathy, such as paranoid ideas, disorientation, impaired memory, weakened balance or coordination, slow or slurred speech, abnormal brain activity on electroencephalograms, Convulsions, Cranial neuropathy (damage to nerves in the brain or brainstem), Peripheral neuropathy (damage to nerves that connect the brain and spinal cord to the rest of the body), Toxic optic neuropathy (damage to the optic nerve caused by a toxin), Irreversible damage to the basal ganglia (brain structures that help control movement), High blood pressure, Drug-induced psychosis, and Liver damage resulting in liver transplantation and/or death.
And on that note comes another little fun fact. They are finding that the neuropathy many Lyme patients are experiencing on Disulfiram is caused by the medication binding with copper in the stomach and forming a compound that goes to the brain causing neuropathy. So on top of all the foods with alcohol and acetaldehyde, you also should try to be on a low copper diet. The list of food restrictions continues to grow! Many people are using enteric capsules to take the medication in so it will break down in their intestines rather than the stomach. I am doing the enteric capsules because my nerves are still repairing from Guillain Barre Syndrome. I didn't have the capsules yet for the first three doses and would get tingling nerves through out my body immediately after taking the medication at just a fifth of a dose. I am also hoping this will allow me to eat more foods with copper in them because it is already a restrictive diet and I don't have many options.
So essentially we don't know why/how it works and everyone on this medication is a complete guinea pig but it's cheap, it's already FDA approved, and it is helping people that have been struggling for over a decade.
I am working on creating some handy guides to help people that are going to be using disulfiram for Lyme and Babesia. I hope these will be helpful because I know I have spent hours of research on how to thrive on this medication and it does take a lot of time, effort, and energy - and most of us in the Lyme world have time but not energy! Hopefully these guides will be thorough enough to be a one-stop shop but always do your due diligence.
My Personal Protocol (will be available 1/18)
Meal Planning Ideas (will be available 1/21)
Let me know if you have any questions or topics you would like me to cover!