I have written about Kelly Kreth on the blog before – she has written multiple guest posts. We met on a little website called Open Diary in 2000 when I started writing there and quickly stumbled upon her diary, which was immediately addicting. I havenâ€™t been on Open Diary in ages, I rarely visit and when I do, I can never catch up because following 40 diaries and not visiting for 6 months makes it impossible. Luckily, I have connections with many of the friends Iâ€™ve made through OD on Facebook and Twitter, and Kelly is one of them.
Kelly is currently fighting a hideous battle against Lyme Disease, which I had heard about here and there, but didnâ€™t really know anything about. Luckily her friend Holly started a Go Fund Me campaign to help Kelly with the insane cost of Lyme treatment, and shared a link to the documentary Under Our Skin, which I cannot recommend enough. I decided to approach Kelly about an interview so we can talk about her diagnosis, treatment, and her long-term health.
When did you start experiencing issues that eventually led to your Lyme diagnosis? What symptoms did you start having?
In March of last year, I started noticing odd memory problems–sort of like things were always on the tip of Â my tongue but it would take longer for me to recall them. I was in a sort of brain fog. I would notice some vocabulary issues, like using the wrong word for things or making really odd typos. My fingers and mind would no longer align at times. I write as part of my job, so this was frustrating and baffling. Â By the next month, I was having trouble reading. By the time I got to the second paragraph I would forget the first. I have never had dyslexia or ADD so this seemed odd. I made a mental note to contact a neurologist and even set up an appointment but it was going to take eight weeks to be seen. A few weeks Â into my wait I woke one morning dizzy, confused, and with the left side of my face numb and slack. I wasn’t sure if I had had a minor stroke or had a brain tumor but I raced to my doctor.
How long did it take you to get diagnosed with Lyme? From watching the documentary, it seems like it can take an exorbitantly long time to get a proper diagnosis. Did you find a specialist right away?
Thankfully my primary care doctor said that she was sure there was no stroke or tumor based on her exam, and she took blood and requested a CT Scan. She told Â me to sit tight. Two days later she said I had a positive Lyme test and that all the symptoms I was describing were attributed to neuro-Lyme. She said 30 days of Doxycycline would fix it. I was relieved but about a week and a half into taking the medicine I started feeling even worse. Every symptom was compounded tenfold. I went to the ER and they did an MRI which showed lesions on the white matter of my brain consistent with Lyme. They suggested I see a neurologist. This was my first indication this was not going to rectify itself within 30 days. I now realized I was herxing even at the low dose of Doxy I was given–the normal dose which can never get past the brain-blood barrier and into the brain. (The Jarisch-Herxheimer reaction (or Herx for short) is an inflammatory response to antibiotic treatment for Lyme. It means detoxification of dead or dying bacteria and other pathogenic organisms in the body. Herxing feels like a worsening of illness symptoms.)
I started researching, and realized that chronic Lyme is a bear of a disease. I found the movie Under Our Skin and figured out pretty quickly this was going to be very costly because I knew I need a Lyme Literate doctor (LLMD), and none of them took insurance. I set up an appointment with one, but that would also be an eight-week waiting period. I also found the only neurologist I could find who specialized in Lyme. Since he was an insurance doctor, it was my best bet. In the interim, I went to a regular infectious disease doctor (DO NOT DO THIS!) and she took one look at my CDC-positive Lyme test and told me I don’t have Lyme. She said it was a false positive (this can sometimes happen but is silly to negate positive results when I had classic symptoms of Lyme) and said she’d take another test. I asked if it came back positive if she’d treat me and she said that I could have 40 positive tests and she would not believe I have Lyme. I already new of the Lyme controversy so it didn’t surprise me, but I just wanted this weirdness to be taken away. I asked her what it could be if not Lyme and she said to see a neurologist but that she sees people in her office everyday with my symptoms and she believes it is a psychiatric issue.
I often think that had I stopped there, I would be a vegetable by now. I think all the time about writing her a letter and telling her what transpired this last year and how so very wrong she was. This woman is literally killing people and/or making them suffer.
I finally met with my LLMD at the rate of $900 but I loved him. He has been compassionate and kind, taking calls from me and friends at 4am, sometimes several times a night. He has partnered with an insurance doctor that treats Lyme so my fees would be minimal. I have made them team up with the insurance Lyme neurologist who has a more traditional take on things, so I think it is a nice balance. That doesn’t mean I’m getting better.
What treatments have been prescribed for you? Are they working?
Initially I was given different antibiotics in 30-day increments at very high dosages. For example I was taking amoxicillin for 30 days at 3000mg a day. But nothing was working. Thankfully it was just the cognitive issues and joint pain back then. For seven months I had oral antibiotics with no change. Then finally I was given IV Rocephin through a PICC line and I started to feel better. I still had brain fog but I had energy and no joint pain. I felt like I was finally making progress, but then the insurance company refused to pay for a second month citing the CDC’s guidelines saying that after 30 days of treatment no one could still have Lyme. Because the current tests are not very good, there was no way for me to prove I was still sick and the insurance ID doctor I was forced to see to get the meds refused to help fight for it. Once they pulled the line out, that was the beginning of what seems like no return for me. For the next couple of months I was in severe pain and had a bout of disassociation. I put my hands solely in the hands of my LLMD at that point racking up tens of thousands of dollars. There is now a blood culture test to show if you definitively have Lyme. It is available in every state but NY so I had to take a long, painful drive to CT. It can turn positive between ten days (if you are severely sick) to two months. If it doesn’t come back positive in two months you are Lyme free. Mine came back positive in nine days. Traditional doctors do not trust this test because there have not been official trials on it but that is because, again, of the CDC’s guidelines from the IDSA (The Infectious Diseases Society of America).
I’m now back on an IV, and am told after this initial 30 days paid for, once again, by the insurance, I will have to pay for continued treatment for six months to a year myself. IV and nurse care can run about $5K a month! Who has this type of Â money? But it is a fight for your life. From being off IV for so long I now have CNS damage which causes my brain to misfire and cause nerve pain all over my body. It is unrelenting. I’m on 30 pills a day now to try to assuage that and other painful symptoms. Nothing seems to be working.
If someone thinks they might have Lyme, what steps would you recommend?
First, learn all you can. Find a Lyme Literate doctor. It is sort of a secret society and you can only get the names by writing to an associate for Lyme advocacy as far as I know. The TickBorne Disease Alliance sent them to me all cloak-and-dagger style. Watch Under Our Skin. You can also contact them for chronic Lyme info. The good news is that most people don’t get into late-stage Lyme and are cured within 30 days if the disease is caught quickly. Be vigilant about scanning your body — even in hair — for ticks and if you should find one, bulls-eye rash or not, get yourself at least 30 days of Doxycycline. Better safe than sorry. Â I never had a bulls-eye rash but now in retrospect I remember exactly when I got infected. It was almost a year before symptoms started, on July 4th of 2011. I was in the Hamptons for two days and was in Montauk and a friend told me not to walk into the brush to go down a small path. Jokingly he said it was Lyme-Alley. I didn’t know what Lyme was so I went. Two weeks later, I had a horrible fever and fatigue which felt like a flu but with no respiratory issues. When my fever spiked to 103 I went to Urgent Care, who said they suspected Mono. When the tests came back negative and I started to feel better we all figured it was a rogue virus. Over the course of the next nine months I was achy in mornings, but I attributed that to getting older.
What can I do to help with awareness and changing the way Lyme is addressed in this country?
Join the TBDA. There are always petitions to sign and rallies to go to. Watch the movie and learn about what organizations are trying to help us. Most of all if you hear of a friend or friend of a friend with late-stage Lyme be kind and try to help them. It is frustrating for us to be in so much pain and because no one seems to understand our disease. Since we typically look normal, people think we are being overly dramatic or are nuts. It is so heartbreaking when someone tells Â me, “Well you look great, you must be getting better” or “Well at least it isn’t cancer…” You can start change right in your own home by learning all you can. We have symptoms that are intermittent and varying so for an hour your heart might be hurting and then it will stop and your vision will be blurry and then that will stop and your hands and feet will be numb or you will feel panicked or be unable to walk down the stairs. It is maddening because you never know what will be happening to you. It is much worse when those around you don’t understand that you can’t control these odd symptoms and that they pass and return with no rhyme or reason.
Try to be cognizant of the fact that sufferers have been affected physically, emotionally, and financially. I recently lost a 25-year friendship because of my friend’s inability to understand my disease. It has been more painful than the physical pain.
…and the questions that I give to everyone…
Tweet challenge! Describe yourself in 140 characters or less.
A good girl who does bad things.
Whatâ€™s your favorite website?
My own, because even though I’m sick I’m still dark and funny and a total fucking narcissist. (Pain can make anyone narcissistic, but I was one long before Lyme attacked me) For me, one of the only ways to stave off depression is through doing something creative, however small. Also, I like to complain. So each day I will share a reason to Die! (with the occasional reason to LIVE when I’m feeling oddly optimistic.
What celebrities did you have crushes on in high school?
I’m old, so I really don’t recall. I suspect Prince and Johnny Depp. Those two have endured for the last 25 years.
Whatâ€™s next for you?
Not to sound morbid, but I just don’t know if there is a next for me at this point. I’m told it could take another year before I can function properly–not be cured, mind you, but be out of pain, able to walk outside for leisure, eat properly, be able to read large amounts of text… I will probably have to take pills my whole life and who knows if any of the damage caused by Lyme is permanent. I don’t know how Â much more of this I can take so I literally live life some days, day-by-day, hour-by-hour, or when it is really bad, minute-by-minute. Â I miss my dachshund Mini but am too sick to care for him properly. He is with a friend but all my friends are taxed beyond belief with dealing with me and this disease. I”m trying to find a local foster who will take him for a few months in the hopes I’ll get well enough to care for him again and give him back. I haven’t found anyone yet and it is a constant worry.
How can everyone connect with you online?
That’s all everyone. Please go check out the GoFundMe page for Kelly, and also please watch Under Our Skin, which was really informative and certainly taught me more than I ever knew about Lyme disease.