by Elisabeth Veltman | photography by Dave Burgess
“When did you get bitten?”
Since coming out with the fact that I’ve had Lyme disease for more than 25 years, this is the most popular question I get asked. My Lyme was a well-kept secret for much of that time and for many reasons: the main one being that the diagnosis had a gestation period of 10 elephants and many physicians, and its birth was a painful series of misdiagnoses and sometimes, cruelty. There were no easy answers, and humans tend to make assumptions when you can’t offer a standard pronouncement of “What is wrong with you?”
“You look fine,” they say with suspicion.
I also wanted to be known for my contributions to life, not as “that sick chick.” Last summer the cat was let out of the bag for good. I had re-emerged from a relapse a year or so before and as things were going quite well and according to plan, I slipped on the ice last winter and sustained a concussion. After that, my remission became a house of cards; old symptoms returned along with new ones. By the end of May, I was starting to lose my ability to walk, talk and sleep. I had also lost my will. There was no more fight in me, and this was the scariest thing of all. A dear friend heard this uncharacteristic vacancy in my voice, and said, “You aren’t giving up. Not today!” She jumped to the rescue, ran a funding campaign and rushed me to Dr. Ronald Stram, a Lyme specialist in upstate New York. Dr. Stram looked over his glasses after the bucket of blood tests came back and said, “Well, you hit the jackpot as far as the Lyme co-infections go.”
Running through my blood were the core co-infections that can come with Lyme, including two Lyme related pneumonias and a malaria-like bug that was now affecting my heart.
A Career Ending Puzzle
My previous blood tests for Lyme never came back positive, let alone co-infections? What are those? So, as I heard the news from these new tests, I asked Dr. Stram more questions about specific symptoms, some of which I’ve fought on and off for years: painful spasms in my arms, legs, and chest, and exploding veins in my hands; complete and sudden loss of muscle tone and function in my legs, hips and arms; numbness, and extreme pain, usually on one side at a time; awful, heart pounding night terrors. At times, I would wake up not breathing, unable to move or simply unable able to sleep at all. I even lost my peripheral vision in my right eye for a few months, but it came back. As symptoms worsened I would slur my speech like a sailor on leave and started having black outs. Moments of time just disappeared.
My training was as a classical singer, performing full opera in the U.S. and in Europe. When I blacked out a couple of times on stage, a colleague told me that I was still singing perfectly, but my face was blank. I had performed some operas more than 100 times; had my long-term memory taken over? I don’t know. I just knew when I collapsed in the corner of an empty hallway after my very last performance, that my career was lost just as it was taking off. I had faced this reality before, after making the final three in an audition for a Broadway Tour with the legendary Faye Dunaway. After I sang a successful, deciding audition with Ms. Dunaway five feet away, I was so fatigued, I was afraid that if I got the job I would have to turn it down. I didn’t get it, and breathed a sad sigh of relief. I knew something was very wrong, I just didn’t know what.
Fastest Growing Infectious Disease in the U.S.
Even really good physicians scratched their heads, because the research, testing and diagnosis of this multi-system, multi-organism-racked disease called “chronic” Lyme could not get past the walls forced up throughout the many layers of the medical and insurance systems. Common diagnostic testing is expensive and only 35-50 percent accurate.
Dr. Stram sent my blood to several different labs around the world and used many different types of markers along with clinical observation to design a targeted IV and oral treatment plan, which got me out of danger. Research is getting more attention in 2017, because according to the CDC, Lyme is the fastest growing infectious disease in the United States, and is also one of the fastest growing in the world. Immediate intervention and long enough treatment targeting the right infections is key to kicking Lyme to the curb before it kicks you. We just need to know what to do.
Part of the medical community believes that Lyme Disease is hard to diagnose but easy to treat. However, physicians in-the-know understand that Lyme needs more than 30 days of antibiotics as soon as the bite happens, that only 50 percent of patients get a telltale “bulls-eye rash,” and that if untreated, Lyme and its co-infections can mask themselves as Alzheimer’s Disease, ALS, Chronic Fatigue, Rheumatoid Arthritis, thyroid disease, and sometimes even Multiple Sclerosis (M.S.). I had a false positive on an M.S. test myself 17 years ago. Lyme is called the Great Imitator because of the multitude of expressions it has within the body and can even exhibit variations between different patients who have the same co-infections.
Music legend Kris Kristofferson is one of the most famous cases. He was diagnosed with Alzheimer’s and depression until he tested positive for Lyme. Last June his wife told Rolling Stone that after he gave up the Alzheimer’s and depression drugs he went through three weeks of Lyme-disease treatment and, “All of a sudden he was back… There are still bad days, but some days he’s perfectly normal and it’s easy to forget that he is even battling anything.”
“For months, I was overcome with fatigue so extreme that I couldn’t lift my head.”
The Bite Me Paradox
When did I get bitten? I don’t know, perhaps multiple times, but there was never a mark. Maybe first when I was a kid, after which a few odd heart palpitations started. Most probably, as a young adult, which would explain why I almost had to drop out of graduate school, got down to 117 pounds at 5’8”, experienced extreme fatigue, and why it felt like I was eating glass and couldn’t keep any food in me for nearly a year.
After a long rest, I got better for a while, but things were never quite right after that. I had to fight much harder to do normal things, and it was frustrating. Privately, I fought hard to live out my passions, and to contribute to my relationships.
I may have gotten bitten again while hiking in upstate New York, England or Scotland. That tick may have had more infections or even a different strain of Lyme, as there are 100 strains in the U.S., and 300 worldwide. I had quit singing by then and was working across from Carnegie Hall when I came down with an influenza that had emptied the New York City streets. For months, I was overcome with fatigue so extreme that I couldn’t lift my head. A friend referred me to an immunologist who told me that my immune system was so devastated that if I didn’t go on immediate bed rest and get 24-hour care I could die. One week, a PCP told me it was still the flu, which had lasted 8 months by that time; the next week, an infectious disease specialist gave me a death sentence.
Still, it could have been just one tick that had all of these infections in its stomach. Stress – a bad flu, an emotional event, a highly political job, death of a loved one, or alcoholism and abuse in the home – can give these infections an opportunity to take over. This is why understanding and healing the immune system is just as important as killing off the bugs. Being surrounded by real love is critical, too.
Go Where the Love Is
Here is the best advice this veteran has to offer: If you think you have Lyme, go where the love is. Whether a doctor, friend, family or yourself, don’t let anyone dismiss, mock, or belittle you when you ask for help. Find a Lyme Literate Physician immediately, even if you aren’t sure if you were bitten. There are a few excellent Facebook support groups for Lyme that are invaluable sources for doctors in your area, as well as empathy and advice. Look for closed groups that have informational documents and caring people who respond. If you love someone with Lyme, look them in the face and acknowledge their struggle. When life throws curve balls at lightning speed, no one can handle it alone.
Bill Gates is backing new testing technology and Dr. Richard Horowitz, MD is spearheading trials for new chronic Lyme treatments. Microbiome research is looking at the fascinating relationship between humans, the environment and the microorganisms that live in and around us. We should be seeing big improvements in handling this disease over the next few years. When you do recover, remember the veteran Lymies and their doctors who have fought tirelessly for treatment options, and who have laid the essential groundwork for these hard-won improvements.
“I’m still here; I bounce back and keep re-adapting, and have been shown remarkable love from truly unexpected places.”
I sometimes shake my head and see parts of my existence flash before my eyes, and then see the “other” life, that parallel life that could have been lived if only I had gotten an early, correct diagnosis … if only. I see the kids I never had, the hundreds of thousands of dollars spent that insurance didn’t cover; missed opportunities with my nieces and nephews, and the isolation that inevitably happens when you have developed perfume and food allergies and have one barrel of energy rather than the fifty that everyone else seems to have.
I’m still here; I bounce back and keep re-adapting, and have been shown remarkable love from truly unexpected places. I will never be able to properly thank the heroes who saved my life, and who gave, and keep giving me another chance to readapt. Maybe next I will be able to launch the websites I have developed to help those suffering with illness. Maybe one day I’ll sing again and record an album with Jack White. Maybe I’ll write that novel.
Whatever your dreams, even in the shade of the impossible, maybe one day you will live yours, too. But if you don’t, it’s OK. Forgive yourself every day and begin again.
10 Things to know about lyme disease
by Dave Johnson MD, FACC
• Lyme disease is caused by bacteria called Borrelia burgdorferi that is transmitted to humans through an infected blacklegged tick, otherwise known as the deer tick (Ixodes pacificus).
• Not all blacklegged ticks are infested with the Lyme disease causing bacteria.
• Lyme disease isn’t just found near the beach or in the woods. Pets, mice and birds carry these ticks as well and can bring them into more urban areas.
• Early removal of ticks prevents Lyme disease.
• Ticks are slow feeders and require 24-48 hours of feeding to transmit Lyme disease. Showering immediately after being outdoors along with daily tick checks are recommended when visiting areas with ticks such as beaches and woodland areas
• Early treatment with antibiotics can prevent most Lyme disease.
• Early symptoms of Lyme disease include a bull’s eye rash (Erythema chronicum migrans), fatigue, chill and fever, headache, muscle and joint pain, and swollen lymph nodes.
• Lyme disease can lie dormant and not cause symptoms acutely.
• The pathognomonic bull’s eye rash (Erythema chronicum migrans) may not be seen in as many as 30% of patients with acute Lyme disease and less than 50% of those with chronic Lyme disease.
• Chronic Lyme disease mimics many other conditions. In addition to persistent acute symptoms chronic symptoms may include arthritis, nervous system symptoms including numbness, pain, nerve paralysis and meningitis. Rarely irregularities in the heart rhythm occur. Persistent problems with memory or concentration, fatigue, headache and sleep disturbances may occur after treatment.
• Chronic Lyme disease may be associated with exposure to other toxins and immune dysfunction.
• Lyme disease can be cured.A holistic approach often aids recovery. Building resiliency by eliminating the pathogen, reducing additional toxic load and optimizing immune system function are essential components for recovery.
Owner of Blue Pearl Strategies, and lover of all culinary delights, Elisabeth started The Tender Palate & Tender Foodie, for people with food and autoimmune disease.