Most of my friends and professional colleagues don’t know that I have been battling Chronic Lyme Disease + Co-Infections, Heavy Metal Toxicity and Multiple Autoimmune Diseases for the past 3+ years. Most don’t know that I have been getting IV’s every week since June 2014. Most don’t know that I take 94+ pills/supplements/tinctures per day. Most don’t know that I have 4-5 hours of detox appointments multiple times a week in addition to all the IVs, Doctors appointments, blood tests and wellness appointments just to feel somewhat human and try and get better. Most people don't know that I recently had a procedure that filtered ALL of my blood in order to try and kill Lyme and remove Heavy Metals from my body. Most people don’t know that I have spent over 1 year trying to kill Lyme Disease and get better and am still not fully healed.
Lyme is becoming an epidemic and it makes me so frustrated that people don’t know more about it or know about how easy it is to get. You never know when one bug bite will change your life forever.
Prevention is really key and educating people on the risks and early symptoms is so essential. If caught early, Lyme can be treated with 4-6 weeks of antibiotics. But if not caught in time it can lead to Chronic Lyme Disease which has no known cure and treatments are very hit or miss. Even if a treatment works, you will have Lyme Disease in your body the rest of your life and will have to take really good care of yourself and take lots of immune modulation supplement to keep it from coming out of remission, and the worst part is you are not immune to it! There is the potential of being bit again and being reinfected and going through the whole process all over again.
Lyme Disease is caused by the bacteria Borrelia Burgdorferi, though there are multiple strains. It is typically transmitted from the bite of a tick, but new research is showing it can potentially be transmitted through sex, mosquitoes or in-utero. Ticks carrying lyme disease have been found in every single state in the US and every country in the world except for Antartica.
The CDC reported 300,000 new cases last year which is more than 2x as much Breast Cancer and 6x as much HIV combined!
It is estimated that the actual number is probably closer to 1 million new cases per year! Why do people not know more about Lyme and its risks? We constantly hear about Breast Cancer and HIV. Why are people not educated on its early symptoms and how to prevent it?
When someone gets Lyme, you usually don’t only get Lyme. Ticks carry dozens of other infections commonly referred to as Co-Infections. Sometimes these infections can be harder to get rid of then Lyme itself. I got the tick jackpot when I got bit. I got almost every possible Co-Infection I could possibly get. In addition to Co-Infections, Lyme totally tanks your immune system which then causes Autoimmune Diseases to turn on, Food Allergies, Candida, Adrenal Fatigue and many other chronic ailments and conditions.
Thanks to Lyme I have 4 Autoimmune Diseases (Celiac, Hashimoto’s, Alopecia and Psoriasis) as well as 60+ Food Allergies. I also have tons of other chronic ailments that are a result of having multiple serious infections for 3 years.
I don’t really know when and where I got Lyme but I have a pretty good guess and gut feeling about it. I have only been camping in a tent 4x in my life. The 4th time we went to Yosemite. I vaguely remember an odd and large bug bite on my hand after the trip. I get bitten by bugs all the time so I just assumed it was a large spider bite. No one had ever told me about Lyme or the rash that comes from a bite. I was fine for a few weeks then got this weird “flu” that would not go away for weeks. I would start to get better then get worse. Again I really did not think much of it because I always seemed to get every cold and flu that went around.
After that “flu" my health completely tanked. I went on for 2 years with increasing symptoms and multiple diagnosis and doctors and no one could figure out what was wrong with me. It was not until we got to bottom of the list of things we still had not tested for. Lyme was one of those tests. In the 2 years I was sick I had seen a few articles on Lyme but I assumed it was an East Coast Disease and that I am not outdoorsy enough to get it. Little did I know my test would come back super positive and it only took 4 camping trips to get it. I believe I was bit August 2012 and I did not get diagnosed until April 2014. It is now April 2015 and I still have not recovered from this.
Most people with Lyme do not get the bulls eye rash and do not see the tick that bit them. I actually have never seen a live tick, but I know they are everywhere. I have met multiple people that were infected in Golden Gate Park in San Francisco without even having left the city! Now that is scary. Lyme is everywhere and nobody seems to know about this impending threat. If you are lucky to see the rash, it's important to get 4-6 weeks of antibiotics right away! I can't tell you how many people I have met that had the rash, but tested negative for Lyme and years later their life is destroyed and they are struggling to treat their now Chronic Lyme. Their struggle could have totally been avoided if they had taken antibiotics at the first sign of the bite and rash.
I am coming out about what I have been experiencing the past 3 years and the long and difficult road I am on to heal myself. I have been very private about my struggles but am ready to share with the world what I have experienced. I want to share my story in hopes of spreading awareness. I want to help people who are already sick and trying to heal from this wretched disease. I want to help educate people so they can know about the early symptoms and save themselves thousand’s of dollars and years of poor health. I want people to learn about prevention and learn that Lyme is a growing epidemic that needs to be out in the open and needs to be talked about.
Healing from long term chronic illness is really a full-time job. Actually it's more than a full-time job. You never get nights and weekends off. On top of being time consuming it leaves you wiped out at the end of the day with no energy to do anything but rest and do it all over again the next day. Then add on all the pills you have to take all day long. It's a lot to swallow, literally. To make things even worse, most health insurance won’t pay for a penny of treatment costs and I have been unable to work for close to a year. It's a vicious expensive cycle that I have little control over. I have spent well over 50k out of pocket on my healing journey and it's not over yet.
One of the worst things about having Lyme is that it is an invisible illness. I never look sick, so it's hard to comprehend how I can be “so sick”. I am hoping that by sharing my story I can start to spread awareness of what its like to be sick with an incredibly difficult, painful and isolating invisible illness. I am hoping I can help guide others on this isolating and scary path of illness and how to stick with it to heal yourself. I am not fully healed yet, but I am way better then I was 8 months ago. I still have a long way to go, but I am starting to see the faint light at the end of the long and dark tunnel.
I have so many feelings stirring inside of me that make me feel like I have to prove to people that I am really sick. No one believes you are really sick when you look normal on the outside. It's extremely hurtful and isolating to have people not believe you are really sick, or that you can't go out or that you can’t work on their project. Lyme can be more painful and as difficult or more difficult to treat and heal from then Cancer. With Cancer is obvious you are sick and it makes people more compassionate towards you. With Lyme, you look fine and people just don’t believe you are really that sick.
What is even more frustrating about Lyme is that I do have some good days when I feel good and can go out and do things. These days are few and far between so I tend to overdo it on these days and try to play catch up on all the other days I was too sick to do anything on. Then there are the days when you feel like you are dying and you don’t know how long it's going to last. Sometimes it changes in a matter of seconds. I can be out feeling good and then all of the sudden I get a wave of feeling super sick, like I am going to pass out and need to lay down as soon as possible.
I have gotten really good at being able to keep my sh*t together when this happens for about 5-10 min to be able to say goodbye to everyone and then go home asap before the feeling of sickness really sets in. So if you have been out with me and I abruptly say goodbye and have to leave, this is why. This usually starts with a flare in neurological symptoms, for example lights and sounds get really intense and my brain is not able to process it all and it makes me feel dizzy and light headed and really overwhelmed. Sometimes I get really, really fatigued that if I don’t start making my way home, I don’t know how I will have the energy to get home. It feels like I go into a primitive survival mode and have to get to my bed ASAP. Usually when this happens my short term memory is totally gone and I can’t remember if I even said goodbye to people or if I just left as soon as I could. Sometimes I don’t even remember how I got home. I just remember that I felt super sick and had to get to bed asap. It's like you enter a weird dream state that seems more like a nightmare than a dream.
Sometimes it passes in a few hours, sometimes this feeling lingers for days and I have to ramp up my detox to feel better, which takes a lot of work to do when you already feel exhausted and like you are going to pass out. It's hard to have the energy to sit in the sauna for 45min and then take a shower and wash your hair when all I have the energy for is laying in bed and not moving.
There have been times in the past that I have not been able to get out of bed for weeks because I am so weak or in so much pain. Taking a shower used to take all my energy for the day. There have been times when even laying in bed is excruciatingly painful and there is nothing that eases the pain or makes you more comfortable. Cannabis has been the only thing that helps relieve symptoms, but sometimes even that is not enough. There have been days when I could not walk or go up my stairs to my bed. Days when I had to walk up my stairs slowly on all fours because the pain in my knees was so bad. Days when I could not stand up straight or even walk because the pain in my hips was so bad and I could not straighten my legs. Those are just the physical symptoms.
On top of the physical symptoms, I have experienced severe neurological and cognitive symptoms that have caused intense brain fog where I can’t think or process information. I have no short term memory and I have issues recalling words when I am mid sentence. I used to listen to music all the time, now I can barely listen to music because my brain can't process all the sounds at once and it overwhelms me. Same with lights. Some days I could not even watch Netflix because it was sensory overload. I could just lay in bed and be and hope for a better day tomorrow.
And if that is not enough there are all the emotional and psychological symptoms that come with the disease. The bugs themselves cause major depression and anxiety and than of course being sick and missing out on life causes a lot of emotional pain and suffering as well. I used to be such a social and extroverted, hard working person. I used to do yoga 5-6x a week and own my own design agency. Now somedays I feel like a vegetable that can just try and be present and wait for my treatment to work or the days to go by and hope that I feel a bit better the next day.
Christine Miserandino at the blog But You Don’t Look Sick wrote an amazing blog post called “The Spoon Theory” that totally sums up what it's like to live with Chronic illness. Essentially spoons are a unit of measurement used to track how much energy a person has throughout a given day. Each activity "costs" a certain number of spoons, which might not be replaced until the next day. A person who runs out of spoons loses the ability to do anything other than rest. One of the key components of the spoon theory is that disabled or ill people must plan their activities to ensure that every day is manageable, while healthy people have a "never-ending supply of spoons" and thus never need to worry about running out. Because healthy people do not feel the impact of spending spoons, they may not realize that chronically ill or disabled people's considerations include mundane tasks such as bathing and getting dressed. For example, if you only have 7 spoons of energy for the day, you may not be able to shower everyday or do certain chores because you would use up all your spoons too quickly and have to spend the rest of the day in bed.
As if the symptoms of Lyme are not enough, when you treat Lyme you actually feel much worse before you feel better. This is called a Herx Reaction. Essentially a Herx happens when the bacteria die and they release endotoxins that make you feel really sick. Your body can only detox as quickly as it knows how so these toxins build up in your body until it can get to detoxing it. A Herx feels horrible. All your symptoms double or triple in intensity and you can have new symptoms such as fever, flu like, achey, tired, emotional, anxious etc. The Herx can be a double edge sword. On one hand, it sucks and the symptoms are awful, but at the same time it can be a good sign that your treatment is working and that the bugs are dying. On certain treatments you can feel like you are in a constant mild Herx, so you end up feeling worse than you do off treatment for weeks at a time, but again you have to go through this to know you are killing the bugs.
I definitely am coming back to life and am night and day difference from where I was even 6 months ago, but I still have a ways to go, and healing does not come without a lot of hard work and patience. One thing I have learned is that I have to let go and try to not rush my healing. It is a long process and I have to be patient and stay positive that I will be fully healed eventually. Each day is a new day and I won’t know how I feel until I get to that moment.
So the next time I miss a social event or project meeting, it's not that I am being antisocial or flaky or don’t want to go. Its that I am worn out from fighting these horrific health conditions, getting poked with needles, sitting in a wooden box sweating or feeling sick from my treatments. Its because I can’t think or process information or I am too sensitive to lights and sounds and have to hide in my dark bed. It’s because I don’t even have the energy to walk downstairs to my desk. It’s because I am waging a full forced war to get my life back from all these bugs that have decided to make my body their home for the past 3 years. Just because I may look like normal Erika on the outside, I assure you on the inside I am far from the normal me.
Please take some time to sign this petition to Legalize Lyme and help Lyme Patients get the care and treatment they need.
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If you are interested in reading more about my journey check out some of my other blog posts:
What Kind Of IV’s Do I get weekly?
What Were My Lyme Symptoms?
Just Diagnosed With Lyme, Now What?
Lyme + Tick Prevention Tips