Consumer Involvement
While stationed in southwest Oklahoma, Major Anders Karlsen became acutely ill in January of 2019, and he has dealt with the resulting symptoms daily ever since. Initially, a presentation similar to a heart attack during a long drive to visit friends resulted in a very scary visit to the ER. Over the next few months, many ER visits and advanced testing yielded few answers. His symptoms were like nothing he had ever experienced in his life and baffled Air Force physicians. The sheer number and strangeness of symptoms made it difficult to narrow down a cause.
An athletic outdoorsman who, in the weeks previous had been lifting weights, running, and hiking, he was overcome by extreme fatigue and weakness that lasted days and on into weeks. His heart would start racing while sitting at full rest, and at other times it would skip beats. Severe cognitive issues developed, including memory loss, trouble following simple conversations, and difficulty completing basic tasks. Extreme dizziness and brain fog became common. He started to develop intermittent numbness in various locations of his body and experienced tingling in his extremities. Nerve issues progressed to small nerve fibers twitching all over his body, combined with nerve pain of every type imaginable. He would frequently stumble and started to slur his speech. Many days a week he would get headaches that progressed to full migraines. Deep bone pain, joint pain, and blurriness in his vision all came intermittently. His hearing would go in and out, with frequent ringing in his ears. The list of symptoms seems endless. What Maj Karlsen found strange is that he had never previously experienced these symptoms other than a normal headache.
In the first 2 months he seemed to get worse, then better, several times, and he went on and off flying status accordingly. When he started to get very sick, going up in altitude flying was the only predicable trigger that seemed to bring on symptoms, including extreme shortness of breath and hypoxia. Maj Karlsen is a highly experienced Air Force C17 Instructor Pilot who has commanded missions all over the world, with thousands of hours of flight time logged. In all this time, he had never experienced anything like this.
Early on, a bad stomach bug was the only theory for his sickness. In fact, an H-Pylori test was one of the only results that came back positive in the early days of his illness. A course of multiple antibiotics made drastic improvements, but he started to regress several weeks after treatment ended. Things started to deteriorate considerably at this point, and it was clear to him that his body was slowly losing a fight to an unknown enemy. He requested to be sent to a top Air Force hospital. The Air Force refused, telling him that no one would take his case and instead, gave him a referral to see an internist 8 months in the future in Oklahoma City. Maj Karlsen was baffled by this, but it was clear to him that he was literally fighting for his life. His family found an expert in Dallas who specialized in complex illness. He set off self-funded, having been, for all practical purposes, abandoned by the Air Force. A highly comprehensive battery of tests again yielded many negative results, showing what one would expect from a healthy pilot. However, the few positives that returned were common tick-borne bacteria. Several species of Borrelia (including Lyme disease) and Bartonella were identified.
It was an “ah-ha!” moment and made perfect sense in retrospect. In late 2018, Anders and his wife, Brittany, had taken their new German shepherd to many parks and grasslands in southwest Oklahoma. They had pulled different species of ticks off both themselves and their new puppy, Agnarr, several times over the course of many hikes, and at the time they were both ignorant of the serious diseases ticks can carry.
Maj Karlsen thought this meant the case was closed. He expected to take the information to the Air Force, get treated, and get back to instructing new pilots. Little did he know the controversy that surrounds tick-borne illness and the fight for treatment. Instead of getting support and the necessary antibiotics, the Air Force pushed him to see mental health professionals, concluding that the stress of a new child was the root of his issues without even informing him.
Ultimately. Maj Karlsen found the best private labs in the country, and the world for that matter, to make sure he had in fact found the correct root cause of his illness. Company after company confirmed the same tick-borne bacteria. His journey led him to some of the best tick-borne illness physicians on both sides of the country. He credits them with saving his life with interventions several times when his immune system weakened during the worst periods.
Anders’ wife, Brittany, found a retired Colonel with a very similar story and reached out to her. When the Colonel helped get the right Senior Air Force leadership involved, his care and support dramatically improved. He is incredibly grateful to the Colonel, who helped to mentor him, as well as the Air Force Wounded Warrior program for the support they provided.
During this period, several infectious disease doctors confirmed that his first Borrelia infection actually occurred over 2 years previously, during a combat mission to the Middle East while he was still commanding operational missions. On the trip, Maj Karlsen identified a classic erythema migrans rash, commonly known as a bullseye rash. An urgent care visit after he returned stateside incorrectly concluded the rash was a spider bite. He was later told it is likely that this original untreated bacterial infection was a part of the reason he became so sick in 2019.
In the fall of 2020, Air Force and Harvard physicians collaborated in prescribing IV antibiotics, which drastically improved his symptoms and helped him regain some of his previous quality of life.
Anders’ dog, Agnarr, was also diagnosed with several tick-borne illnesses from the best state labs in the world, including Borrelia, Bartonella, and Babesia. During the period of Maj Anders’ initial illness, Agnarr was also very sick with strange symptoms. Fortunately, veterinary medicine does not have the same controversy over tick-borne disease, and veterinarians are better trained in this regard and will promptly treat it. There are still many unknowns, as in all of tick-borne illnesses, but the good news is that Agnarr is doing well, although he has been on antibiotics several times during relapses.
Maj Karlsen came to understand that the challenges he had faced were not rare, but sadly, are more of the norm in this country for people who encounter tick-borne illness. It is getting better, but there is still a long way to go. This understanding is what has driven him to advocacy. Better awareness, testing, and treatment are all needed. Anders is active with the Center for Lyme Action, advocating for funding for tick-borne disease research through Congress. He also works with the Bay Area Lyme Foundation and Texas Lyme Alliance advocacy. This year he participated as a Consumer Reviewer for the CDMRP.
Maj Karlsen is still on active duty, but will likely be medically retired in the next year. It is frustrating to know that prompt identification and effective treatment might have saved his career. More importantly, it was the best shot at preventing the myriad of permanent issues he deals with to this day. He hopes he can play a small role in helping others who deal with these terrible diseases both in and out of our Armed Forces.
He gives his infant daughter credit for driving him to get to the bottom of what was wrong and never give up against all odds. Her smiles and joy gave him strength as his body was failing and his world crumbling. Anders credits the support of his incredible wife, Brittany, and both of their families during his journey. Additionally, he has met many strangers who have poured out nothing but love, help, care, and support. He is incredibly grateful to the researchers and physicians who have dedicated their lives to help end these diseases.
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Last updated Tuesday, November 12, 2024