It is 7:45 am. I have been laying here for awhile this morning in the still quiet darkness contemplating. Thinking about where I stand, in the Lyme world.
You see, what seems like a billion years ago, back in 1991, I got sick. For me, Lyme, was like throwing on a switch. One day I was normal, the next day I was not. And I was never able to be ok again.
It took 15 long years to get the diagnosis of Lyme disease. I did not know there was a conspiracy behind it when I got diagnosed. I found out quickly though when I did not respond to the 3 weeks of Doxycyclene prescribed. My then family doctor who originally diagnosed me with Lyme disease referred me to an Neurologist, who got mad at me and called my family doctor right in front of me and my mom and yelled at her for diagnosing me with Lyme. He then said loudly in front of us that I was manifesting symptoms of Lyme disease because I had a book with me about it.
You see back then, I did not have internet. I was in the middle of moving and I had asked my mom to bring me to a book store so I could buy a book to learn more about it. We went on the way to the appointment. I had not even looked inside the book as of yet.
The neurologist then referred me to an infectious disease doctor. I left that appointment crying and confused. I didn’t understand what had just happened. Did my family doctor make a mistake in diagnosing me. Was she just guessing? Wasn’t there a test that I was positive on? Why was he mad at her and me? I didn’t get it. I still don’t, all these years later.
How can a doctor be mad at me for a diagnosis another doctor gave me? If that doctor was wrong, how can he be mad at me for believing a doctor. I mean, aren’t doctors kind of like Gods? We are supposed to blindly believe them I thought? I had a lot to learn about doctors, about the whole medical system.
So anyways the next trip to the infectious disease doctor was even worse. He swung the door open into the room I was waiting in for him and said very loudly, what do you want from me? What do you think I can do for you? I was so confused. I had never had a doctor talk down to me like this in such a condescending way. I mean, I was sick and I had gotten referred to him. What does he mean what do I want from him? I want to get better. Isn’t that what every sick patient wants when they go to a doctor? Is there any other answer other then that?
He told me that Lyme tests weren’t always right. He told me I didn’t have Lyme but he would do another test to reassure me. To this day, that office would not give me the results, even when I filled out papers to get all my records, that test has always been omitted from my records.
So this type of behavior from doctors went on and on. I started to research Lyme disease, and many other illnesses on my own, online when I eventually got my computer hooked back up.
It was a glorious day when I found my first Lyme support group. There were a lot of people just like me. Not that you want anyone else to be sick, but to know you are not alone, you are not crazy, there really is some weird epidemic out there making people really sick, was at least mentally reassuring. I found my people. I found my tribe.
I felt like fifteen years of being sick not knowing why, feeling crazy, and I finally found my answers. There was a weird illness called, Chronic Lyme Disease and it was being swept under the rug. It was being hidden and denied by the medical profession, but why?
I was born a justice seeker. I can’t stand when things are unjust and unfair. I want to fix the world. Cocky, I know. don’t worry, this Lyme thing would put me in my place. This world cannot be fixed so easily.
For the next decade, I would put 99% of my energy into trying to fix this situation. I started with a letter writing campaign I put together on My Space. Then started my own Lyme Support group. Then did some Lyme walks, and media writing campaigns. Over the next decade I would go on to be a part of many protests, including being the US coordinator for the Worldwide Lyme Protests. I mean come on, every protest done for any reason gets lots of attention from the media right?
Lyme didn’t. I thought there is noway that 30 countries from around the world could all be a part of the Worldwide Lyme Protest on the same weekend, two years in a row and this disease NOT get the attention it deserves. I stood corrected. To this date there have been soooo many protests. Protests, walks, rides, runs, you name it, we have done it. There has been media campaigns and a big “Take a Bite out of Lyme” campaign. Besides the Worldwide Lyme Protests we have had the Mayday protests year after year. And still, nothing. Crickets.
During all this, activism stuff, I went on to continue documenting everything I could find Lyme related, on this website and on my other Lyme blogs. Man the journey took so many twists and turns. Now looking back I see I was clinging to hope through all of this. Wanting to believe everything I was taught about Chronic Lyme. Going back to the part of the journey where I had first gotten diagnosed and rejected by doctors, I had learned in the Lyme support groups that finding an Lyme Literate doctor or what we call, LLMDS, would be the answer. These LLMDs would put me on a course of long term antibiotics. Then I would get better.
Long term antibiotics was the answer back then. Whether orally, or through a picc line or port, this was the answer. Everyone was doing it. Some people claimed to be better from it, but a lot of people were staying ill, or getting worse and developing things like C Diff from doing these long term treatments. For about three years I dabbled in Lyme doctors, and long term antibiotics. But, something didn’t feel right about it to me. I felt like I was continuing to get worse instead of better.
But the Lyme community ingrained in my head that it was normal to get worse before better. They insisted you have to go this route because to get better you have to herx. A Herxheimer Reaction is when you do a treatment to kill Lyme, or other spiochetal infection such as syphilis, your body fills with toxins from the die off of bacteria and it makes you feel sicker until your body can clean out all these said toxins. Then you will feel better.
Well I kept waiting for this “feel better” part to happen. A decade later, it still hasn’t.
So after my long journey through Lyme doctors and antibiotics, I decided to try alternative treatments. I did so many things, rife machines, Salt/C protocol, all sorts of expensive herbal protocols, supplements, the list goes on and on.
I remained sick. Each year getting a little worse. Sometimes a lot worse. But there always seemed to be an answer for why from the Lyme community. Why we remain sick. That answer changes about every six months. Some reasons said are mold, biotoxins, XMRV, CCSVI, co infections, mast cell activation disorder, untreated viruses, parasites, gene mutations, metal fillings, and the list went on and on.
Each time I would learn of a new “thing” that was keeping us sick, I’d tackle it. Yet, I remain sick. Sicker and poorer and depleted a little more each time of the small amount of hope I had to begin with. This is a horrible roller coaster to be on. To get a glimmer of hope, another answer in this puzzle, to try it and to be only let down again. It’s crushing.
I suddenly could not do this anymore. I had to get off this ride.
This is just a tiny part of my story with not very many details. But something happened the last couple years. The last couple years have been honestly, brutal. I have gone through battles with C Diff, Yersinia, and never ending back and shoulder pain. It literally was crippling. I have been in bed for about 80% for the last four years I’d say.
So despite doing long term antibiotics, enough supplements to fill a high school gym, three different rife machines and all the other Lyme treatments, here I am, mostly bed bound. At the very least mostly housebound. I can only be upright for a certain amount of time before I have to lay down. Either my blood pressure is dropping, or my back hurts too bad too sit or stand. I feel dizzy, light headed, get vertigo, non stop head pressure, legs feel weak like rubber bands, yet walking is like trying to walk through cement. My eye sight is deteriorating, my ears non stop ring and my left ear is always full, my back pain is horrendous and the muscle spasms are daily. I haven’t been able to lift my left arm for years. Im shaky and experience an internal buzzing and tremor to various degrees everyday, my heart beats so hard Im always aware of it, with everything I do. Walking to the bathroom is liking running a marathon. My comprehension is lacking, to say the least. I can’t remember anything. I am completely dyslexic now. I have hynagogic hallucinations. My house is full of lists so I remember to pay things, or show up to appointments. I have anxiety through the roof and my OCD is worst than it has ever been. My doctor jokes to me, that Im aging. So I guess to her these things are normal at 51 years old.
So this brings me to where I am at today. I always thought I would fight with all my will til the day I dropped. And in some respect I will, like through running the Lyme Memorial. But I have given up on protests, and all the physical events. I simply cannot do them anymore. I have stopped blogging about all the treatments. I have lost faith that they are helping most of us. While there is always a few saying they are better, most of us are not. I think this fact is not spoken about enough in our community. This is the truth and the truth needs to be known.
Im not throwing Lyme doctor under the bus. I believe they are the only ones who truly believe us. I do believe we are guinea pigs right now. I believe they are trying with all their might and do hope that what they are treating us with will help us. Yet, I think the cold dark honest truth is, that most of us are not getting better. Many of us are living home bound, in bed and some dying.
It’s all so overwhelming. Each time a new Lyme patient reaches out to me I cringe and my heart breaks. It’s like the universe is taking a piece of my soul each time. I know I sound so dramatic, But it’s the God honest truth. How can we help that 3 year old that got bit? How can we tell a twenty-something year old mom, with two young kids, that she will have to go on a journey now that will last her the rest of her life probably, take all her money and energy, and in the end she will probably still be sick. What answers do we give? How do we tell a thirty year old man that he will no longer be able to support his family but give him hope he’s not a burden on his family? How do we do this?
Look around, we are all still sick. I know a handful of people who got better. Most did the same list of treatments that I did. Most turned to natural or alternative treatments in the end before their remission. Most changed their diets drastically. But this is just a handful. The core group of my Lyme friends, like me, despite all the expensive life changing treatments they have done, remain sick. Some who claimed to be in remission are sick again.
I don’t know what to do anymore. I have run out of answers, or maybe just stopped believing in the answers that I used to. The best advice I can give someone now is to join the support groups. Weigh your options and find a doctor you can trust that will go through the journey with you carefully. If that is possible. For me, it has not been.
The support from the Lyme community can be invaluable. But there is also a lot of nuts out there so just be careful who you become close to. Don’t rush into trying a treatment just because so and so said it worked for them. Study each thing you learn about and proceed with caution.
And instead of coming here reading my blog.. I would read this one, because I think it will give you the tools to cope with your new life. Living Lyme: Hope is where it all Begins.
So on this note, I guess I just found it necessary to let everyone know why I have faded like an old light bulb. My energy has just run thin. I have become a grandma 3x over now. I have begun putting all my energy into my family now. I devoted so much of my life to Lyme, now it’s time to just accept what is, and put my energy into what matters most for me, which is my grandkids and children
I hope younger people with more energy will continue on with Lyme activism, until we know truly what this illness even is, if it’s even Lyme at all. Whatever it is, I hope there are people out there strong enough to keep on fighting. Let’s all pray this next generation has better answers then we did. My love to all who continue to battle this disease.. and who continue to fight for our rights and truths. ♥
~ Lisa Hilton