Andrea H. Caesar has been battling an ailment that has afflicted her since she was just 11 years old: Lyme disease. It has totally changed the way she used to be. Her entire life has been affected by this tick-borne disease. Perhaps most especially, the fact that not many doctors, at first, knew about Lyme disease and considered it to be a disease that “doesn’t exist,” made her initial years of having it both a psychological and physical ordeal. Caesar wasn’t diagnosed with Lyme disease until she was 36 years old. She has written her account of battling Lyme disease, the disease that “doesn’t exist,” in her book, A Twist of Lyme, which I have reviewed elsewhere at this site. Andrea Caesar has graciously agreed to do the following interview with me. I hope you enjoy reading it, and that you or someone you know are not afflicted with Lyme disease.
Douglas Cobb: Andrea, you mention in your book A Twist of Lyme that you got Lyme disease when you were just 11 years old. At the time, do you recall ever having been bitten by a tick, that you or your parents then removed from you?
Andrea H. Caesar: Back in 1986 when I was eleven, while Lyme disease existed, no one really knew about the typical “bulls-eye rash” as we know it now. Even if we had known, only a minority of people who are bitten by ticks get this rash. We do, however, remember me getting – what we thought were – dock spider bites, which very well could have been from a tick.
Douglas Cobb: You have written an intense and emotional account of the travails you went through, and are still going through, because of having Lyme disease. For instance, you write about losing the sensation of having any feeling in your shins. Before you knew you had Lyme disease, what did you and your parents think might be afflicting you?
Andrea H. Caesar: It had been 26-years of wondering. Lyme has so many symptoms which are also symptoms of other diseases, HUNDREDS. The symptoms don’t necessarily remain consistent but can come and go with little rhythm or warning. So sometimes, we thought I had the flu, migraines, growing pains or shin splints, other times I’d be tested for mononucleosis, sinus infections, and the normal things that teenagers come down with. As I grew older, I was diagnosed with depression, adrenal insufficiency, fibromyalgia, chronic fatigue syndrome, estrogen dominance and general hormonal imbalance, hypothyroidism, endometriosis, amongst others, some of which still stand, but then finally Lyme Disease and several co-infections in 2011. The fact is, we just didn’t know and sometimes it was very scary.
Douglas Cobb: You lived for a while in Boston and also had a job there, right, Andrea? What was it about Boston that made you want to seek employment, eventually, in Sweden?
Andrea H. Caesar: My first job in Sweden actually came to ME! I was working for a Swedish company in Boston and spoke fluent Swedish, as I had been a high school exchange student in Sweden. I loved, and still do, that country, and have always had a piece of myself there. When the offer arose at the age of twenty-four to work in Sweden for a company I loved, I jumped at it. I had always been a very spontaneous person.
Douglas Cobb: One of the symptoms you’ve experienced due to Lyme disease is “Lyme Rage.” Would you please tell the readers of The Guardian Liberty Voice what “Lyme Rage” is, and give us a couple of examples of when you have experienced having it?
Andrea H. Caesar: Lyme Rage is, in my opinion, one of the worst symptoms of Lyme Disease because it is not only emotionally detrimental to the patient, but VERY hard on the patient’s loved ones and caregivers. One of the hardest chapters for me to write was the one I forced myself to write while IN a Lyme Rage. Appropriately titled as such, I wanted to give my readers a look into what it was like to be inside the tortured mind of a person going through it in real time. I am glad I did it because this is one of the chapters that most caregivers thank me most for in letters and emails, because they never really understood the anger and would get angry and frustrated right back, which only escalates the problem. I am glad that this chapter has helped some people find some empathy for these episodes.
When in a Lyme Rage, it’s as if you are in a bubble watching yourself as another person. You are never quite sure what will trigger it, if anything. In my case, it was usually not being able to find something or being sure I had told someone something and they swore I had not. Various people react in different ways to their Lyme Rages. When I was younger I would throw things and scream more. As I grew older I would mostly just scream and cry. It’s very scary for the patient and it’s not the patient’s fault and it’s not a situation where “Get it under control!” works. Thankfully, this can be successfully treated, as it has been in my case, with proper medication and treatment protocol. Unfortunately, Lyme Rages are one of the reasons why people with undiagnosed Lyme Disease get lumped into a misdiagnosed group of patients with various kinds of psychiatric diagnosis when really it is an infection of the brain that needs to be treated.
Douglas Cobb: In 2005, Andrea, you wrote that you were tested for Lyme disease but that the result came back “IND.” What does “IND” refer to, and what was it about the test for Lyme disease back then that made it fairly inaccurate?
Andrea H. Caesar: In simple terms, it was a false negative, by today’s medical standard guidelines. According to those guidelines, if you look at the test as a whole, it says I did not have Lyme disease. It would be the same result today as it was then because the blood testing has not changed, as there has been NO PROGRESS in the conventional Lyme diagnostics world available to us that would make any difference. The test I took in 2005 (and several other times just in case we got “lucky”) tests for antibodies your body creates to fight Lyme, meaning it looks to see if your immune system is fighting Lyme.
The Lyme spirochete is a chameleon and a quite brilliant specimen which creates a protective biofilm around itself and can eventually hide anywhere in the body’s systems. So, if you have a very developed infection, as I did, and your immune system is too weak to recognize and fight the disease, as mine was/is, then that test will come back negative even if you have the spirochetes in your system. What diagnosed me in the end was a urinalysis I took while taking Lyme antibiotics over six days and taking three specimens. In those specimens the lab detected die off of the actual Lyme spirochete, which meant I had the bugs in my body and with that, a diagnosis.
Douglas Cobb: Who was/is “Dr. Steve,” and how long did you work for him? Why did you finally stop working for Dr. Steve?
Andrea H. Caesar: Dr. Steve Clark a licensed naturopath with an office in Wolfeboro, NH. He is also very well-versed in the latest Lyme treatment protocols. I worked with Dr. Steve for six or seven years. After he successfully diagnosed me in 2011, we began treatment for Lyme Disease, but because I had been ill for so long, my entire body system collapsed. It was a very difficult decision for me to leave the practice, but in the end my debilitation could no longer be ignored.
Douglas Cobb: For several months, Andrea, you were taking antibiotics Dr. Clark prescribed for you. Who was/is Dr. Jemsek, and why did he recommend that you stop taking the antibiotics?
Andrea H. Caesar: I had taken oral antibiotics with Dr. Clark for about six months when we decided I needed to stop them and see one of the best in the world who could conduct test and provide treatments that an ND could not. Dr. Jemsek is a board-certified physician in infectious disease and internal medicine. He diagnosed the first documented case of AIDS in North Carolina in early 1983, and has been recognized with North Carolina’s Certificate of Appreciation, for his groundbreaking workin the field of HIV/AIDS treatment and research, as well as with the World AIDS Day Volunteer Service Award in 2004. In 2000, he founded a specialty infectious disease practice to serve patients with HIV/AIDS. His practice rapidly evolved to include a large influx of patients with Lyme Borreliosis Complex (LBC), commonly referred to as Lyme disease. In 2005, Dr. Jemsek focused his practice exclusively on LBC, and has treated thousands of affl icted patients from every state in the US as well as from multiple other countries. In January 2010, he opened the Jemsek Specialty Clinic in Washington, DC, where he continues to serve patients from around the world. To me, he is Dr J. To my daughter, he is Dr. Superhero and she is certain he wears a cape.
When I started seeing Dr. Jemsek in Washington, DC, we did several tests on my major organs and found that I had damage from Lyme in every part of my brain. My body and my brain were simply too weak at that time for antibiotic treatment, so we needed to stabilize my brain systems before we could treat the infections. After about four months, I restarted antibiotics, only this time with high dose IV antibiotics to via IV powerline through the chest. I did this for ten months. Even now two years later, I remain in treatment and still take high doses of oral antibiotics. While my book had to end at page 364 (and it was actually cut down from over 500 pages!) my journey and fight continue, though I would say I am 85% better and on my way to long-term remission.
Douglas Cobb: You write a lot about your daughter, Anelya, who you also call Mini, and how she helped you and gave you strength. Could you please mention a couple of the things that Mini did that has helped you deal with the devastating symptoms you’ve had because of Lyme disease?
Andrea H. Caesar: Anelya is a very special child with a very old soul. I was diagnosed when she was 2.5 years old. She has been so understanding and has rolled with so many punches; like Mommy not being able to attend birthday parties or play with her or bake cookies. She just hugs me every day with everything she has and says how I am the best mommy in the world and how she knows I am trying to get better and she knows I will. Some nights we lie in bed and cry and she will confide in me that it’s very hard sometimes when Mommy can’t get out of bed, but I love that she is so articulate at just five-years of age. For the past few months she has come home to me in a black room, usually almost asleep. The first thing she says is, “Hi Mommy, Can I get you something?” I always say no or “Just a big squeeze.”
But to give you the best idea of how she interprets what’s happening was her reaction to something that happened this past weekend. For the first time in months I was able to play with her making crafts for almost an hour (on my bed, but still), and then we went downstairs, I made her dinner, sat with her and then put her to bed. All by myself. This for me was an incredible feat. And she knew it. The next day she said, “And yesterday you were able to (do all of those things) and it was like a miracle, Mommy! You ARE getting better!” I have been sure to let her know since she was a little girl that she is special, that this is not how every mommy lives, and that I am fighting very hard to get better for her. She always giggles and squeals when I say that.
Douglas Cobb: I just have a few more questions for you, Andrea! Why is it that, even now, medical groups like the Infectious Diseases Society of America, according to Dr. Jemsek in the Foreward of A Twist of Lyme, doesn’t allow the editors of medical journals to discuss “Borreliosis Complex,” as Lyme disease is also called?
Andrea H. Caesar: This is very touchy territory because not unlike most controversial subjects, behind the conundrum that is Lyme disease is a spider web of politics, pride and greed. I speak from my own opinion as a patient and victim of this situation. Having experienced this throughout my own life, through my treatment and through my own education with the help of my highly regarded Lyme Literate Doctors (LLDs), I am confident in saying that the answer to your very question will eventually be unveiled as the greatest American public health care scandal of all time.
The manipulation of facts and science to protect the interests of those of the appointed Lyme panel at the IDSA that have 202 patents for diagnosis, immunization, and prescription medications of “chronic Lyme Disease’ will become to big to conceal any longer. The documentary “Under Our Skin” explains this in great detail and is a “must see”. It is clear that such a small panel of “experts” knew how complex, destructive and lucrative this disease could be. Why else would they spend the time, research and money into making a vaccine for a disease which they repeatedly claim is “hard to get and easy to treat”? In short, in my opinion, there is one word to answer this question: corruption.
Douglas Cobb: What target audience do you think would enjoy reading the book, and/or be helped or comforted most from it?
Andrea H. Caesar: I wrote this book not only for people with Lyme Disease, but also for anyone who suffers from other chronic and invisible illnesses. But this is also for their families and caregivers. There are plenty of books out there about the science, medicine, political struggles, and triumphs from the disease. But mine is the only one I have found that is written by someone while “in the trenches”. I wanted to humanize Lyme Disease with this book; to turn the politics and fighting between the IDSA against the rest of us and give us a HUMAN voice. Slow things down a little, and give a raw, honest, and truly no holds barred depiction of a year in the mind of Lyme. I wanted it to hit people on a visceral level so hard that this book and my disease cannot be ignored. At the same time I hope it opens people’s heart to those with chronic and invisible illnesses.
That said, I think every single medical student, especially infectious disease and naturopathic student, and anyone working in an environment that does Lyme testing should read this book as well. I have had many traditional doctors contact me and let me know I have opened their eyes. THAT is a huge deal for me.
Douglas Cobb: Thanks again, Andrea, for taking the time to do this interview with me! I hope that your symptoms keep decreasing, and that you have fewer days when they flare up!
Written by: Douglas Cobb