Hi. My name is Jen and I have late stage chronic Lyme disease. My life before my diagnosis consisted of having a career as a hairstylist, being a hands-on mom to three amazing girls, being the room parent, going on every field trip, and never missing one sporting event. Those are all things that I loved more than anything, I still do, but because of this illness I feel as though I have been robbed. I feel as though I, and my children, have been robbed. 
It all started 2 years ago when I developed a rash that was covering 75% of my body. This rash itched terribly, but it also hurt. It would create sore that took forever to heal. I was constantly online looking for answers, remedies, or any other helpful advice. Initially, I booked an appointment with my primary doctor. He was clueless and referred me to dermatologist. Over the course of a year, I saw 12 different doctors. I was told everything from “Bath and Bodyworks is bad for me” and was given “safe” samples of hypoallergenic soaps, face washes, etc. to being told that it was all in my head, and that I should seek psychiatric advice. My favorite was: that I was a picker, and that maybe I was doing this in my sleep. Some even suggested I could be into drugs.
My daughters + I before my diagnosis of Lymes disease.
I was tested for everything from AIDs, to Syphilis, and all my results were negative. It left me feeling anxious, depressed, and scared. Most of all, it made me mad. I felt like I had been dismissed by so many doctors. At that point I decided to take matters into my own hands and contact Today’s TMJ4.
I wrote a letter to Today’s TMJ4 in May of 2014. I told them my story and sent pictures of my rash covered body. It was a matter of hours before I received a reply from them saying they wanted to feature my story. I went on the news with hopes of someone out there seeing what was happening to me with hopes that they might know what was going on, or a doctor might see it. I am so thankful that I did that interview. I received so many calls from people that suggested I might have Lyme Disease. I had previously researched this disease on the Internet, but because like half the people who had this disease, I didn’t have the “famous” bullseye rash. What I did have that was common were the aching joints, the clumsiness, the memory, mood, sleep, and speech problems. I went to see a Lyme literate doctor 4 hours away, it is not uncommon for people infected with this to have to drive many hours to get treatment. The reason being that there are less than a dozen Lyme literate doctors in Wisconsin which I find insane, seeing as how Wisconsin happens to be the #3 state in the world of confirmed cases of Lyme Disease. Lyme Disease is a serious condition, effected multiple areas of the body. Typical treatment is taking long term antibiotics, which doctors and insurance companies don’t agree on. It’s a disease that is so often misunderstood that is a growing epidemic that is effecting people more each year than breast cancer.
I never remember getting bit by a tick, nor did I ever get the classic bullseye rash. Many patients and doctors don’t know Lyme early signs and symptoms. The longer Lyme lingers in your system, the worse you will be. As soon as the infection infects a person, it disperses through the bloodstream, then the coil shaped bacteria or Espirochete uses its corkscrew shape to burrow into human tissue infecting your joints, nervous system and more. The standard test that most doctors use is called a western blot test. Those tests are 65% inaccurate, often inconclusive, or indicating false negatives. Why you may ask? The reason is because the clever bacteria has found a way to “dumb down” the immune system and white blood cells so that its not detectable. To diagnose properly, it’s imperative that you see a Lyme literate doctor. A Lyme literate doctor will look at your entire medical history, not just the individual symptoms. And for hundreds of dollars not covered by insurance will send the blood samples to a lab specializing in Lyme testing called IGeneX. That was a year ago. Since then I have been on so many different combos of antibiotics to treat late stage chronic Lyme disease with the co-infection of Bartonella. It is very rare for a person who has Lyme do not have at least one co-infection. My Lyme literate doctor believed that my rash was caused from Bartonella, also commonly known as “cat scratch fever”. Bartonella has caused a burning in my entire body, even my eyeballs, with a sticky substance that comes through my pores. I have suffered two episodes of Bell’s Palsy that left my entire left side almost paralyzed.
The IGeneX test results confirmed my Lyme Disease diagnosis. What it also can tell is approximately how long it’s been in my system. It’s been in my system for 7 years, and needs to be treated very aggressively. My thyroid has also been compromised and a recent MRI shows that I now have lesions on my brain. To say I am scared is an understatement. My doctor feels as though IV antibiotics is necessary. I’m not sure whether or not my insurance company will cover it. I’m doubtful since the center for disease control doesn’t even recognize this being an epidemic that’s on the rise. There are 300,000 to half a million cases that happen each year. When it becomes chronic and late stage like I have, it becomes a serious illness. It has drained many people like me if their entire savings. Along with the antibiotics I’m on, and countless vitamin supplements I take on a daily basis, I also have to eat and organic, clean and a gluten-free lifestyle. It is not cheap or easy to have this disease. People and doctors are so uneducated when it comes to the facts surrounding Lyme Disease. It’s called the “invisible” illness for many reasons. The first and I think most important is that deer ticks aren’t the only thing that carry Lyme Disease. Mosquitoes carry it, as do our beloved pets. Many sufferers have pets, and are not aware that the pets gave it to them. Here’s how it happens: -Your pet goes outside to do their business. -The tick jumps on them. -The pet them comes in, and you cuddle your pet. -Then that tic get on you. It numbs the skin, and they are so tiny that you never know you got bit. Don’t think of me as an animal hater, I love animals. But I also learned that they are “tick taxis.”
This disease is often labeled an “invisible illness, meaning just because you can’t see the changes, that doesn’t mean they aren’t real . There are so many people that don’t understand this debilitating disease or their effects. Those that think they know are actually misinformed. It’s very important to me to set the record straight. Maybe that person who said I needed to get off my lazy bottom and work will see this, or the person who said I must be on drugs because I fall asleep at the drop of a hat without warning. I have heard things like this over the past 2 years . I have struggled and fought alone. I have not been one of the lucky ones to receive help. It’s funny how that works; when you get sick , and are not as fun to be around as you once were. You find out the hard way who really cares about you. Turns out I can count on 1 hand, with 3 of those being my daughters. People may see me out , and think , “wow , she doesn’t look sick, she must be faking.” Little do they know it took me 3 hrs to try and cover up the scars I have from the lesions I have suffered, or that I recently chopped my hair off due to the fact that along with the Lyme Disease and the brain damage, my thyroid is also malfunctioning causing my hair to fall out in handfuls. My speech has suffered as well. Don’t assume that I am drinking when my words are slurred and I have trouble pronouncing a word.
I am stuck inside this body, please understand that being sick doesn’t mean I’m still not a human being. I have to spend each day being careful about what I do, what I eat and make sure to take the ridiculous amount meds and vitamins I have to take on a daily basis. Please understand the difference between “happy” and “healthy.” When a person has the flu, they are miserable with it, imagine being sick for years. I can’t be miserable all the time. I work very hard at not being miserable. If your talking to me and I seem happy, it means I’m happy. That’s all. Chances are I’m still tired, in pain, I could be sicker than ever, so please don’t say “Oh, you are sounding better.” I am merely happy. I am stuck inside this body. Please understand that getting out and doing things does not make me feel better. It makes me more times than not feel worse. Telling me that I need to get some fresh air and exercise isn’t going to make me feel good. I have tried.
There is nothing wrong with admitting that you have no idea what I’m going through. One of the worst things I face more often than not is people’s ignorance when it comes to Lyme disease . When I first became ill , someone who use to be close to me said, “so what, you got bit by a tick , deal with it.” Comments like that and or negativity is something that I can’t let into my world anymore. It’s essential to my healing that I live toxic free. Which includes people. Trust me when I say that asking for help or confiding in people is a difficult task that is very hard for me to overcome . I’ve been a single mom for 9 years, I always have gotten what needs to be done one way or another done. I hate burdening people with my problems and obstacles I face. I don’t like to make others feel bad. Having a medical problem is no fun. It’s not something I’m proud of.
But I didn’t ask for it, I wouldn’t wish this nightmare on my worst enemy. If by chance I do ask you for help, or a small favor, I want people to know its a huge cost to my own self – worth. Compassion and respect go a long way. The isolation I feel is somewhere that I hate to be. I try very hard to be positive when it comes to talking about my disease with my 2 youngest daughters. Every day I push myself, I push through all my symptoms all the time. I have to. I don’t get “sick days,” kids don’t feed themselves, nor does the dinner make itself. The same goes for laundry. I wish I could not have to worry about whether or not my girls have clean underwear for the night, and be up till wee hours of the morning getting it don . I’m still learning how to live with in the confines of this disease and make the most of it. There have been people close to me that have suggested I don’t want to heal myself , and suggest I do this or that , or see a new doctor , or try a new drug ,etc. Let me just say, unless you are a Lyme literate doc, or someone who shares this horrible illness, and I ask for your advice, please just keep it to yourself . I have tried everything available to me that I am able to afford. If something new is made readily available to me, I will try that as well. It’s very unsettling to me that I have to defend myself to the cynics on how I tried this or that, or they don’t trust the effectiveness of a certain treatment. I’m sure these people mean well and are trying to help. Just assume I’ve tried every option available to me to date. Everyone wants to feel good. I’m no different, and no it’s not in my head. By hearing things like this is very stressful and toxic, 2 things I can’t allow in my life. I am fighting the fight of my life, I have a long road ahead of me before I will even make a dent.
Which brings me to addressing what I’m sure people have been wondering, I know I was. That is why on Earth after a year of being on heavy duty antibiotics, am I not seeing any improvement, only a decline in my health. Like I said before, it’s vital to my health that I eat a organic, clean, gluten – free diet and to reduce my stress. Well, little did I know until recently that the missing piece of the puzzle is that I’ve been living in a duplex that is filled with mold. To someone with a compromised immune system like mine , being exposed to mold for the past 3 years day in and day out is making my condition nearly impossible to treat. It’s crucial to my health that I find a safe environment for my family. I am actively on the lookout for anything available ASAP to rent. So far I haven’t had any luck. If you or someone else you knows has anything available, please contact me.
The sooner I’m out of here the better off I will be , and can begin my journey back to health. I chose to share my story now because May was Lyme disease awareness month. Better late than never. It’s very easy for my brain to get jumbled up with what I want to say. Not to mention the toll this has taken on me. It’s emotional for me , and makes me sad. It’s breaks my heart that I feel like my girls are being robbed of a healthy mom. When I look in the mirror , the face staring back at me is so different than the one I’ve always had. My skin is dull, my face has taken on a sunken in look , and the thing that has changed the most are my eyes. I now have sad eyes. I’m sad for many reasons, but what hurts more than anything is how no one offers and just does anything to lighten my load.
I haven’t had the support like many people do. I don’t need anyone’s pity, skepticism, or criticism. I just need people’s understanding. If you care about me, take the time to learn about this disease. Cook me a meal and bring it over. Offer to do the dishes, or throw in that load I’ve had to rewash 5 different times . It’s the little things like that that can help make a difference in my world. I’m going to end by saying this Lyme Disease is on the rise. If you think it can’t happen to you, think again. This disease is real, it’s the worst thing I have ever had to deal with. I lost a career, friends, thousands of dollars, and my quality of life. The worst of it is my girls lost a healthy mommy . I need people’s love and support so I can continue this long fight I have in front of me. I am sicker than ever, but in a way stronger than ever because I am a fighter , and I will not give up. I was born to be Hannah , Maddie and Ella’s mommy. They mean everything to me and looking at them gives me strength to be brave. I don’t want to have sad eyes anymore, nor do I want to feel like I have felt this past year. No one should have to go through what I’ve gone through alone. It’s a very difficult time in my life, I’d rather not continue this fight on my own, so I’m reaching out to anyone and everyone. Please help me take a bite out of Lyme.
Love, Jen
You can help Jen by donating to her Go Fund Me account to help with medical + living expenses for her and her daughters:
You can read updates and more of Jen’s personal stories on her blog:
HERE.
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