Living With Lyme

By Alex Cohen

The struggle of living with an unknown epidemic…

If someone would have told me six years ago I would be suffering from Chronic Lyme disease (or PTLDS) I would have said they were crazy, especially since I knew very little about the disease. Not only did I get Lyme more than five years ago, I have been suffering the side effects ever since. My life will never be the same.

More than five years ago I called my doctor and told him I had a terrible pain on the arch of my left foot that would not go away. He sent me to see a podiatrist who diagnosed it as Plantar Fasciitis and gave me some inserts. Months went by and my pain persisted and worsened. I began to get fatigued and started to have memory problems. I mentioned my symptoms to a friend who said it sounded like Lyme disease. I called my doctor again and he told me he did not think I had Lyme but would test me anyway – the test was negative.

A few more months went by and new symptoms appeared: my extremities started to tingle, just like when your hand or foot is about to fall asleep. Mine was all over my body! I called the doctor again and told him the test must have been wrong. I was not getting better. He retested me and, again, the result was negative. It had been a year since my first symptom appeared and I was extremely frustrated; something was wrong and no one seemed to know what it was.

One day at a friend’s party, I told a guest, who happened to be a doctor – Dr. Bernard Kruger – about my symptoms. He looked me in the eye and said, “you have Lyme disease.” I explained that I had been tested twice and both times the test was negative. He explained that I needed to go to a lab that specialized in Lyme as their tests were more sensitive to the tick-borne illness. The test came back positive. I was put on a regimen of antibiotics for one month; my doctor did not believe that two weeks would be enough for me.

Miraculously I started to feel better: foot pain was gone, the tingles subsided and I slowly got my brain to wake back up. I was cured – or so I thought. About 11 months later, the tingles returned and this time with a vengeance. I thought the Lyme was back. I called my doctor, but he said it was not Lyme; I had taken the antibiotics and I was cured, so it must be something else. He ran a series of tests and everything was normal. He told me I may have to learn to live with it…

I started to see every doctor who offered treatments for Lyme: I cleansed, I juiced, I meditated, I took a mixture of herbs, did acupuncture – I would have drank blood if it helped! After another year of suffering, body and brain drained, I found Annalisa – Dr. Annalisa Pastore. She is married to my cousin who is an anesthesiologist at Columbia Presbyterian. She is an MD who decided to become a holistic MD – thank God she did because she saved me.

I have been under her care for the last three years. In that time I have only had two small setbacks because of the co-infections that Lyme so generously leaves behind…otherwise I see her every three months. She performs acupuncture and adjusts my supplements if needed. I am still not 100%, but at least I no longer have to live with the tingles, pain and brain fog.

There are so many other stories like mine and many worse. People are suffering from Lyme and do not even know it. I had no visible tick and no rash at all, which I have found to be more common among Lyme sufferers. I have met people who are crippled by the disease, who have lost organs because of the disease, people who can barely function because of the disease. I consider myself lucky.

Be your own advocate, stand up for yourself and your body. You know when something is not right, pay attention and act on your instincts. Most doctors do not understand or believe in Chronic Lyme; you may have to find another doctor, a smarter one, a more educated one – a specialist.

After my last episode three months ago, I decided to do something not only for myself – but also for those suffering now and those who have Lyme and don’t even know it. Through our Foundation, I am exploring ways in which we can more effectively diagnose and treat Lyme disease. I know it will be a long journey of working with leading researchers in this field, but I am up for the challenge and I am not giving up!