GLA Contributor, Carmen Payne, discusses her journey with Lyme, co-infections, and COVID-19.
How long have you had Lyme disease? What were/are your symptoms?
I have had Lyme + co infections for approx. 28 yrs. I was diagnosed in 1996 but had had symptoms as early as 1993. I was treated with 21 days of Trimox and told I was completely cured. Little did I know that was a completely false statement. My initial symptoms started with exercise exertion. I was an avid runner and when I would go on a run, about a mile in, I would start to experiences neurological symptoms. I would lose my balance and would not be able to walk a straight line and had slurred speech. I would end up having to walk back home and within a couple of hours I would feel fine. I would try it again in a few days and would have the same experience.
Eventually I started to suffer paralysis which led me to a neurologist. A spinal tap at this time only revealed Epstein Barr. I was given instructions to go home and rest. Soon, I started to suffer from blurred vision and my vision kept getting worse. Eventually I had severe pressure in my left eye and the inflammation was causing me a lot of migraines. I was referred to an ophthalmologist who diagnosed me with uveitis which required steroid injections directly into my eye ball in order to save my vision. This went on for weeks where I had to go in for injections. I ended up having a few more flares of uveitis over the years and still today my ophthalmologist gets me in immediately if I feel any pressure or sign of inflammation. I began to experience multiple problems from weird rashes, allergies, constant body and brain inflammation (only I did not understand that is what was happening at the time). Referred to multiple specialists for multiple things and all of them just kept telling me everything was fine “your labs are normal.” I began to experience cardiac issues and was admitted to the hospital for further evaluation but dr could only identify a slight valve issue and send me on my way.
This cycle continued on for decades from specialist to specialist with no answers. At one point in my quest for answers I made an appointment with my primary to demand that my entire history be evaluated and start to connect the dots as for someone at my age it is not normal to have a volumized medical file. My doctor agreed and asked me to return in a week. At that follow up he, in summary, said “I think its best if we not diagnose you. You are living a relatively normal and productive life. I think if we put a diagnosis on it will cause you insurance problems later down the line.” After hearing “it’s all in your head,” “your symptoms are psychosomatic,” this was the first time I felt my doctor was acknowledging that something was wrong, but he could not tell me. I, for some reason, felt vindicated in this but I was still left with no answers as to what was really wrong.
In 2017-2018 I began experiencing severe sleep issues. Doctors tried to tell me it was sleep apnea and sent me home with a breathing device. This I found to not help. I finally sought out help from a very experienced ENT who determined my issue was not sleep apnea, but he suspected it was narcolepsy. This is where things began to unfold. I was experiencing Exploding Head Syndrome, which is basically like a fire cracker going off in your head when you are trying to sleep. It is very disturbing. I was falling asleep at work at my desk and got so bad that I had pillows in my back seat so I could go sleep in my car at breaks and lunches and I was falling asleep at the wheel. After a full weekend sleep study, I was diagnosed with Idiopathic Hypersomnia to the degree that I was borderline narcoleptic.
My body was screaming for help at this point in my life and everything seems like it was unfolding at once. Rashes kept erupting and a dermatologist biopsy determined it was Lyme. This by now had been the 3rd CDC positive Lyme Western Blot and Elisa test that I had. I asked the dermatologist to treat me and she said “I can’t you have already been treated.” Giving this information to my sleep specialist along with the rest of my history he told me “If you don’t treat the Lyme things are going to get worse, you need to find someone to treat you.”
This is what led me on a quest to learn as much about Lyme as I could. I watched documentaries, searched out foundations and found Global Lyme Alliance. I joined groups on social media and asked lots of questions, read, and did lots of research. The more I learned the more I was angered at how I was mistreated and discriminated against in the medical industry. I was made to feel as if I was crazy and just another psych case. My doctors words kept repeating themselves in my head “I think its best if we not diagnose you.” He knew! He knew what was happening and he didn’t tell me.
After a year of doing research on types of treatments, reading reviews of doctors and trying to navigate and learn about all of the options out there I decided I would go to Dr. Jemsek at the Jemsek Specialty Clinic. This was and has been my savior. I can’t say enough about my PA and Dr. Jemsek. I was warned that once I started treatment I would likely get worse before I would get better. This turned out to be just the case. I started treatment in March of 2020 and by June of 2020 I was unemployed (on disability) due to the severe symptoms and Herxmier reaction. The healing process was ugly, to say the least, but after more than a year of treatment while I still struggle from time to time I feel like my quality of life has improved drastically and my body is slowly healing. While I know this is a lifelong commitment now that I have taken control of my medical care and advocate for myself for the first time in decades I feel like I am in control of my life, my body and my future. I sleep soundly now, no more exploding head and I can get through the day without falling asleep. For the first time since I was in my twenties I feel like I have hope to live a fulfilling life once more.
How did Covid affect your Lyme disease?
I was diagnosed with Covid in December of 2020. At this time, I was at the tail end of my Lyme treatment. I had been making drastic progress and then this. Covid set me back months it seems. While my son (who was diagnosed first) recovered from it within a week it took me well into three weeks to recover from the severe symptoms. Soon after this one afternoon while watching the news I realized I could not read. The news captions were flowing on the screen and I could not read anything. It was like I had dyslexia. All of the sentences were letters that made no sense. I was still experiencing exhaustion, relapsing fevers, and was experiencing severe cognitive issues. I was having trouble not only with reading but word finding when I spoke. I met with my psychiatrist who diagnosed me with Post Viral Delirium. Over time things have slowly improved but it caused a huge set back in my Lyme treatment. Once diagnosed with Covid my PA halted my treatment. We worked to stabilize my symptoms. I kept having severe issues with inflammation, migraines and histamine reactions. After about 3-4 months I was able to resume treatment again. With the break in treatment I felt like I was starting over and was experiencing strong herxing again. Cognitive issues continued but only improved over the last 2-3 months. Histamines issue have gotten somewhat better but I still experience lots of inflammation. My joint pain and arthritic issues after not having issues with this for months started again. I am still struggling to control the pain.
Did you get the vaccine, which one, and what were the side effects?
I did get the Pfizer in May of 2021. My first dose I experienced the typical sore arm and felt a little tired the first day. After the second dose I got sick for about 2-3 days and then I was fine.
In July of 2021, I started to feel very sick again. I did get another covid test and it was negative. I am not sure if it was the delta variant, but I was sick for about another 3 weeks with many of the same symptoms I had when I had Covid. It’s very hard to differentiate what symptoms are Covid or which are Lyme as they seem to share many similarities.
What has this time been like for you living through a pandemic with Lyme?
My life prior to the pandemic was truly not that different than when the pandemic hit. Prior to Lyme derailing my life I was very active member of my community, parent and employee. I had a very full social life. Once my Lyme symptoms got bad, I essentially became a hermit and lost my social circle. I spent most of my weekends at home, sleeping and trying to recover so I could go to work on Monday. I was very isolated. Living through the pandemic was no different than living with Lyme. The pandemic life was my life prior to the pandemic. Now that things have opened up, and I am feeling better most days I am trying to be more social again but with my experience with Covid I am still very fearful of being re-infected. I truly do not feel my body can handle any more pathogens and viruses. The holiday season causes me some anxiety as I feel the cases will rise again. With or without the vaccine and antibodies, I think we know that variants will still be an issue and the next variant is not something I want to add to the smorgasbord of pathogens in my body.
Have your friends/family been understanding and supportive of your health concerns during this time?
Many of my friends and family have been following protocols for masking, vaccines, and distancing, so I would say yes. My son (who got Covid first) and his friends were not following protocols and as a result I got sick. My son and I had to have a discussion about the risks, and we are now following sanitizing protocols in the house more. However, there are a few friends that didn’t feel Covid was “real.” Being around this group did cause me anxiety due to what I felt was a bit reckless. Whether its real to you or not is not my concern. I had it and I know I can’t get it again so for me it is very real and my fear is very real so for that reason, I opted to distance myself from this group of friends until I feel safe. One of my friends that did not think it was real just got his dose of real when he contracted Covid recently and is still suffering the after effects of it.
One piece of advice for others regarding Lyme and Covid?
My advice is always be your own advocate. Listen to your body. Make sure your household and friends respect your opinion and wishes for keeping healthy and safe. Both of these diseases are so detrimental to our health and having both is just a double whammy, a whammy that we just cannot afford to have. Practice masking, hand washing and don’t worry about fitting in. Order in as much as possible. I order everything from Amazon and I order groceries from the store and have it delivered so I don’t have to go to the store. This helps minimize potential re-infection.
*Opinions expressed by contributors are their own. Carmen Payne contributed to GLA's COVID-19 and Lyme Disease Series