By Alex Cohen

In 2015, the Foundation launched the Cohen Lyme Initiative to help fight Lyme disease and other tick-borne illnesses. Since then, I only continue to hear more and more Lyme-related stories that are both sad and terrifying. This disease has wreaked havoc on people’s lives; some have lost their jobs, their homes, their spouses, their sanity and even their lives. Those of you that have followed the progress of the Initiative know that it is inspired by my personal struggle with Lyme disease.

Lyme disease has defined my life for the last seven years. Despite the symptoms of this devastating disease, I have maintained decent health, give or take a few bad episodes. However, last month my health took a turn for the worse. Even through my most recent struggle, I think I am one of the lucky ones. I have never been completely debilitated as others have, and I have been fortunate enough to be able to afford all the therapies available that insurance does not cover.

Early on in my struggle with this disease, I had never seen a tick or a rash, and by the time I figured out what was ailing me, years had passed and the damage was already done. Like so many others, mine is a story that is way too common in the world of Lyme.

This past August, I found a tick on my stomach while in the Hamptons and I removed it immediately. I started a three week regiment of antibiotics right away, just as precaution, but after two months I was having terrible cognitive issues and I felt as if my brain was half asleep.  I couldn’t read and retain what I had just read, I couldn’t work for more than 3-4 hours a day before collapsing into a chair, I couldn’t remember anything, even what I had for lunch a few hours before, and my words were stuck in my brain.

I went to see a doctor in Boston who specializes in brain injuries caused by physical injury or illnesses (she also suffered from persistent Lyme).  She ran a series of tests and was actually shocked that I was able to function at all, due to how bad the results were. Obviously, she did not know me that well…

When she sat down to speak to my husband and me, she explained that the disease was causing my immune system to attack itself, along with everything else in my body – good and bad. She went on to say that, due to the severity of the damage, I was in danger of contracting an autoimmune disorder that would be almost impossible to get rid of.

My options were limited. I could start a year-long series of IV antibiotics which may or may not clear up all the viruses in my body, or I could go to Germany and try a radical – but commonly used in Europe – treatment involving hyperthermia. The latter option would require me to stay at Klinik St. Georg, a clinic in Germany, for two to three weeks to undergo a treatment that that was so new, it isn’t approved yet in the U.S. (a treatment that, prior to the Lyme epidemic, was reserved for cancer patients). My husband and I researched the treatment and the German clinic and decided it was a much faster, and better, choice for me than a year of IV antibiotics.

While the thought of being so far from home in a foreign country, and undergoing such an extreme treatment was scary, becoming debilitated was even scarier to me.  The doctor from Boston decided to come with me and do the treatment as well, and away we went.

We arrived in Germany and everyone in the clinic was very nice. You could tell that they ran this place like a well-oiled machine (and had done so for the last 30 years).  It was family run and I met every member while I was there. Everyone had very different jobs but they were all devoted to treating various cancers, and now Lyme disease.

I won’t go into the gory details of the treatment but there was a lot of natural detoxing, and once a week I underwent the actual hyperthermia treatment. The treatment consisted of an entire day of fasting and then getting into what looked like a baby incubator, covered in nothing but a towel and a lot of sensors to monitor my vitals. Once asleep they start to raise my body temperature, first to 105° F and when stable all the way to the magic temperature of 107.6° F, for 90 minutes to 2 hours. No, this is not a typo! The whole process takes 6 hours.

After the hyperthermia treatment was completed, I went to a room near the nurse’s station where they gave me a lot of liquids to keep me hydrated. The entire time, they tried to keep me as comfortable as possible – which was not easy because I woke up feeling like I just came out of the worst flu ever. I slept most of the day and night and by the next morning, I was just happy to be alive. I took a shower because my hair looked like it had been fried – so much so, that when I removed the rubber band holding my hair back, a ton of hair came off with it (according to the doctors, a normal side effect).  The day after the fever was a bit of a blur. It was hard to eat but I slept, a lot. Two days later, I started to feel half-way normal and I was able to eat a little. However, this is where I started the detox process all over again until the next fever. Thankfully, I had the weekends off to take a break. I booked a hotel room across the street from the clinic to get some much needed sleep in a real bed, take a bath and get real food – it was heaven.

My friends visited me in Germany and took turns keeping me company during the treatment. My wonderful husband also came down for a long weekend and seeing him made me feel so much better.  The day after he left, I woke up with the most energy and clarity of thought that I had felt in years. So, I took advantage of the surge and worked the entire day, shooting off emails and talking to everyone at work. It was a great feeling and I thought to myself, “the treatment is working!”

Coming home on the plane was a rough trip, as we were spent from all the testing, detoxing and fevers… not to mention how much time we spent not moving our bodies very much. We were weak and in pain.  However, we made it back and now we were finally home, but that’s not where the story ends. There were three more days of additional treatment at a NYC hospital, which would have been done in Germany but I found someone to do it locally.

Finally, I was free from the hospitals, nurses and the endless black and blue bruises from needles. My arms were grey and bruised from where nearly every vein had been tapped into.

We were told that it would be three to six months of recovery before we could see real changes. But, I feel like the few hours of clarity I had (on more than one occasion) while in Germany was proof that the healing had already begun.

The following week I headed out East to work on the house and rest a little. Admittedly, I did more work than rest, which I later paid for with aches and pains and complete fatigue.

I know this story is long and some of you may be asking, “why blog about it?”

I want people to understand that while some of us who have Lyme look perfectly healthy, inside, our bodies, minds and spirits are a different story.  It’s hard to describe the kind of “sick” we are, but that makes it no less real than all the other terrible diseases out there.  You may think some of us are faking it, making things up or wanting people to feel sorry for us, but the reality is that we hold a lot in and walk around like everything is ok, as to not be judged and ridiculed. Some days are great and others really bad, but I have determined that I will not let this illness take over my life.

I will fight to find a diagnostic and a treatment, and I will educate people – parents and doctors – about how real this threat is.  I hope and pray that no one close to you ever contracts this disease, as right now it’s a life sentence with no parole in sight!