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Jennifer from the United States shares her experience using Low Dose Naltrexone (LDN) to treat Hashimoto’s, Ankylosing Spondylitis, and Lyme disease.
She first noticed symptoms in January of 1999. She thought she had the flu, but was sick for a week with a high fever and migraines. After that, she didn’t feel as if she’d recovered. When she went back to the doctor, the only thing that came up on testing was kidney failure. At that point, she had to stop playing hockey and drop out of night school for college, and it was difficult to work her full-time job. She had problems with fatigue and focusing. Over 14 years she saw over 40 different doctors and had over 60 tests done, but the doctors never found much that they could diagnose. However, her health continued to decline. Doctors ran tests for Lyme disease, connective tissue disease, other types of autoimmune disease, and Marfan syndrome, but they couldn’t come up with a good explanation for her symptoms. Eventually Jennifer developed Hashimoto’s and Ankylosing Spondylitis. Her doctors also found she had two mutations of the MTHFR gene.
In 2012, she went to the Cleveland Clinic and saw a neurologist who recognized her autoimmune conditions. He recommended a gluten-free diet, which was helpful in reducing her rheumatoid factor. At that time, she still suffered from fatigue and chronic urethritis, which was very painful. Finally she saw a urologist who recognized she had an infection in the walls of the urethra, and put her on antibiotics. However, the antibiotics weren’t very helpful in relieving her symptoms.
By 2013, her symptoms would flare and subside, but she began having IBS issues as well as increasing cognitive problems and migraines. She couldn’t walk right, she couldn’t talk right, and her writing was illegible. She felt that she had a lot of symptoms of Lyme disease, but the infectious disease doctor said she didn’t have it. She then went to a lung doctor who tested her again. This time her tests were negative for IgM, positive for IgG, and positive for bartonella, anaplasma, and mycoplasma. He started her on low dose naltrexone in October of 2013. They started at 3 or 4.5 mg, which was too high of a dose, so they went down to 0.5 mg, which was a better dose. She learned that she reacted badly to the higher dose of LDN because of her chronic Lyme disease, parasites, and systemic candida. Within a year, she responded to the LDN and her doctor was able to gradually increase her dosage to 3 mgs as her health issues resolved.
Just before starting LDN, Jennifer would rate her quality of life at about a 1 on a scale of 1-10, due to constant pain, fatigue, and sickness.
In terms of side effects of LDN, Jennifer had vivid dreams for the first week, but after that, she’s had no ill effect from the LDN. She does find that it works best for her to take LDN in the early evening, around 6 or 7 pm.
Jennifer noted positive effects from the LDN in the first week of taking it. She was able to lower her blood pressure medicine, and her IBS issues resolved. She also was able to get off all of her allergy medicine, including Singulair and two inhalers. Initially, her pain levels increased, but after the first two weeks, the pain went away. The LDN has allowed Jennifer to get off of about 90% other medications, and she’s lost over 30 pounds.
At this point, her quality of life is significantly improved, though she’s still dealing with the Lyme disease and coinfections that had gone undiagnosed and untreated for over 14 years, so on a scale of 1-10, she’d rate her quality of life at about a 5. She would definitely recommend that patients with her conditions give LDN a try--she tried LDN instead of going on the biologic Remicade, and she’s glad she did. The LDN regulated her immune system rather than suppressing it. It might seem to make some symptoms worse at first, but in her experience the LDN just brought forward underlying health issues that needed to be addressed. As those issues are addressed, her quality of life continues to improve.
This has been a summary of Jennifer’s story. Please listen to the interview for the full story.