HUGE giveaway!

image
TICK * TOCK*  TICK* TOCK* TICK*  

Only 4️⃣8️⃣ hours til Lyme Green with Envy launches a MASSIVE giveaway to  103 WINNERS! From Lyme Disease, Multiple Sclerosis & Fibromyalgia Awareness products to Natural/Organic Gift Baskets for new parents(valued over $100) and a Natural/Organic Beauty Basket(valued over $200)!!!!

All you have to do is “like” the Lyme Green With Envy Facebook business page & enter your email address when you click the raffle link below, then share!

***All winners will be chosen at random(using the online generator), and I will personally reach out to you for your address information. You may enter the contest as many times as you would like ***

 

Fundraisers go full force for Lyme Disease Awareness Month 

This awesome tee shirt is available now, and only $15!! Buy it today in order to receive it by May 1st! 

Please share, we need at least 15 shirts sold to get this created! Click here to order, or type in the web address(listed in the pic) on your browser.

Withdrawl and stability

I’m aware that prescription medications that have the shortest half life(the length the drug remains in your system after you’ve taken the last dose) is short, around 5-7 hours. The medications with the shortest half life have one thing in common: the worst and longest withdrawl symptoms. I didn’t expect to have such adverse internal reactions from withdrawal of neurontin.

I’ve been taking neurontin(a.k.a. gabapentin) for almost 5 years. I would always call this drug my “gold.” Of all the medications I take, this one seemed to help me feel normal. Or, as normal as it would seem. I’m relatively nerve-pain free when I take this, and nerve pain is my biggest complaint with the Lyme disease. 
I’ve read up on the withdrawals, and have noted several people discussing taking a magnesium supplement to offset the withdrawals. I also have some “gaba”(NOT the prescription but the supplement) that I’ve been taking as well to lessen the withdrawal. Does anyone have any suggestions? I hate waking up 2-4 times per night drenched in sweat and having constant nightmares. The anxiety, fear and crying has reduced quite a bit, thankfully.

I’ve been taking my greens daily(from Itworks) to alkalyze and balance my body as much as possible during the withdrawal, drinking an insane amount of water, and taking the gaba,magnesium, and turmeric supplements for pain relief. 
I’m going to try to double up on the greens from here on out to see if I have better results. But I’m open to suggestions! 

Lyme Disease contest

Follow me on instagram(LymeGreenWithEnvy),  like & share my latest post(pictured), to win one of the 4 items shown. The choice is yours & shipping is paid by me!!

I’ve decided for MAYDAY2016, I will be fundraising not only for myself but also for a fellow Lymie whom is unable to find themselves on their own(person to be determined). 
My daughter and I were able to make it to Mayday2015, thanks to all the support we received from fundraising sales in my Etsy shop..  

Www.etsy.com/shop/lymegreenwithenvy

 

Wait, what? 

Checking my email tonight and come across an email from thrivemarket.com. Thrivemarket.com is an ecommerce all things natural store. I started to the scan the email of and towards the bottom there’s a little area  that tells you “shop sections.” Under the heading is general items you would expect to see including; raw, vegan, paleo, etc… Then a little section called “MOMS.” Wait, what? So, thrivemarket.com, why the sexism? The section entitled MOMS has everything from kids fruit snacks, to toothpaste and beyond!  

Are you freakin’ kidding me? 

That instantly left a bad taste in my mouth- so you can keep your fruit snacks & toothpaste! With seemingly knowledgeable(and liberal) ideals and morals, I was in SHOCK to see that title. 

I’m not a diehard feminist. I’m not. But limiting the section supposedly made FOR WOMEN to household and children is just irritating. 

Rant over.   

  

  

My story.. 

Here’s a snippet of my “Lyme story” that was given to the journalist… I’m currently working on a Lyme Disease E-book.. Unsure if anyone would actually read it. It would discuss Lyme, my symptoms, and what I did to help myself relieve my symptoms… This snippet is kind of long, but here it goes… If you make it to the end of the excerpt, you’re appreciated! Thank you!!

I contracted Lyme Disease from a tick bite in Gaylord, Michigan in 2008. I went from a normal 22 year old to someone who couldn’t comprehend all the changes that were occurring. I didn’t have time to process how different my life was becoming. 

Everything happened so fast. One minute I’m in a cabin with a few friends having a great time, the next I’m being diagnosed with Lyme Disease- an incurable illness. 


I didn’t notice the life-changing bite until the final day of the vacation. My friends and I had gone to a local water park and it wasn’t until I felt the sting from the chlorine that I looked down at my thigh and noticed a small scab. I figured it was a spider bite and continued having fun. After a few hours, we left the water park and started to head home. 


I remember feeling nauseas, sore, and extremely tired. I brushed it off as effects from the active week we all had. 

The details leading up to urgent care are a bit foggy for me. I had a temperature of 103, and I couldn’t walk on my own. I was feeling immense pain throughout my body. I was confused, couldn’t form sentences and was extremely lethargic. I remember my younger brother, Ryan, calling my parents and they advised him to take me to Urgent Care. 

The doctor asked if he could look at the bite, and when I showed him, I noticed there was a “bulls-eye” ring around the bite, which I hadn’t noticed before. It was so large it covered about half of my thigh. He asked if he could photograph it and I said that was fine. He then called the nurse into the room and she told me they were going to remove the scab, which they did. She showed me the piece of the tick that was attached to the scab, and explained to me how they bury their heads inside the victim when they bite (in order to feed). They told me they were sending the scab and a blood sample to their labs. The doctor gave us a brief description of what Lyme Disease is and wrote me a prescription for Doxycycline, which was an antibiotic that he wanted me to take for 30 days (he made sure to put emphasis on the importance of taking the antibiotic). I didn’t ask many questions, as all I could think about was going home to rest. 

Growing up, I was always stubborn about medication. It would take far more than just a headache for me to resort to taking something like a Tylenol for relief. With that said, I’ll be honest, I only took about a week and a half worth of my Doxycycline prescription, not the full 30 days. The antibiotics made me feel like I had the flu. I felt they were making me worse and not better. Ultimately, I underestimated the consequences of skipping the remaining doses. 

***my symptoms***

The problem with symptoms from Lyme disease is that they vary from day to day. I was very active growing up, I played sports and was always “on the go.” I was a straight “A” student in high school with aspirations and dreams. I still have aspirations and goals, they’re just extremely different now. 


One of the most annoying symptoms I have is the constant feeling of the “common cold”. This particular feeling is one that I experience every day. My body’s new “normal temperature” has changed from the usual 98.6, to 97.1 on a day-to-day basis and my blood pressure is always low (about 95/65). I battle with symptoms of meningitis daily (I.e. constant headaches, pain and stiffness in my neck, fevers, etc.) and I also have many co-infections (the beginning stages of MS, fibromyalgia, babesiosis, etc.).

I’ve lost most of my memories from large chunks of time before I was infected, and I have terrible short-term memory retention. I battle constant chronic fatigue; no matter how many hours of sleep I get per night, I’m always exhausted. 

I’m constantly nauseous, have vertigo, suffer from increased anxiety and have a terribly short attention span. I used to be extremely social and loved hanging out with friends and family. Now, the thought of that alone gives me anxiety. I’ve become reclusive and prefer to be home now rather than in a social setting. While this was a drastic change, at first, I’m okay with it now. Home is where I’m happy. Part of me thinks that is because when I’m at home, I’m in control of my surroundings.

Some days, my neurological symptoms are the ones that are more dominant. When this is the case, I can experience issues with forming sentences or recalling words that I’ve used on a daily basis. I’m also extremely sensitive to light and sound. Loud and spontaneous noises give me anxiety to the point where I need to remove myself from the setting. 

I would say that my nerve damage is probably the worst symptom I deal with on a daily basis. It’s severe and I experience it all over my body. That pain (also my first symptom) was giving me this “my body is going to implode” feeling, in the beginning. It’s so severe that if I were to brush up against someone, I would shudder in pain. Or, for instance, if I were to scratch my hand (even a scratch so tiny, a normal person wouldn’t notice) I would experience pain equivalent to what one would experience if they were stabbed or had their hand sliced open. The disease has particularly impacted my mouth, causing my teeth to be pushed from my gums. It’s disgusting, but it’s true.

About 4 years ago, I went to the doctor for a sinus infection and the doctor gave me some antibiotics to treat the infection. I couldn’t fathom the experience I was about to have as a result of this medication. I remember being horrified, watching my skin actually break open and begin to blister after experiencing what we, in the Lyme community, call a Herx-heimer affect.The bacteria/spirochetes in my blood decided to “fight back” against the abx and caused this reaction. I actually filmed it occurring because I knew that if I were to explain to someone what happened, it would sound so outrageous that they may not believe me (though I wouldn’t blame them). 

This past fall up until now has been the worst for my arthritis. The arthritic pain I experience, particularly in my hands, has taken over my life. It affects my normal, day to day activities. I can barely use a pen/pencil and opening caps or lids of any sort is a daunting and sometimes impossible task. 

As for recent symptoms, my newest is facial palsy. The left lower part of my face is almost completely numb. I notice it the most at night, when my face will begin to tingle and then I’ll lose feeling. 

I was in the emergency room this past week because I had such horrible abdominal pain (worse than my 18 hours of medicine-free child labor) that I couldn’t walk, move or talk. I was terrified. After what felt like an endless amount of tests and X-rays, the doctors are still unsure of what caused it. I was given some medication for pain (Motrin, because I refuse to take narcotics unless the circumstances are dire), and I left. I’m terrified of hospitals, only because if I contract a cold or flu virus, I’m down for weeks instead of a few days like a normal person. When I get sick, I’m sick for weeks to months. This fear, coupled with the fact that I am admittedly stubborn, is why I will only go to the hospital if I absolutely have no other choice.

With this disease, I’ve become a great actor. I’m very good at smiling and pretending I’m fine, while inside, my body and spirit are at war with one another. It took 3.5 years for me to finally admit to my friends and family that I have chronic Lyme disease (excluding my immediate family, because they’ve always known). I didn’t want to be perceived as weak or disabled because of the disease; I didn’t want the “poor you” attention. It took me almost 4 years to get myself to acknowledge and accept that this is my new “norm.”
 
I’ve been told one day, most likely, I’ll be in a wheel chair and will have to live the rest of my life that way. I absolutely refuse to accept that, and I’m going to fight back with every fiber of my being. Not even necessarily for me, but for my daughter. 

***my pregnancy & temporary remission***

Before I became pregnant, I was stuck in this dark, ominous place inside of my head. I was depressed and annoyed, and I couldn’t fully come to terms with the fact that the rest of my life would be different. I didn’t want to. I was stuck in this detrimental “poor me” phase that I couldn’t seem to get out of. 


When I became pregnant I found that my Lyme “symptoms” began to subside. My doctors explained to me that they’ve learned that persons infected with the disease often go into remission while they are pregnant. For this period of time, I finally remembered again what it was like to feel “normal.”

It wasn’t even 30 minutes after my daughter was born that the Lyme returned, and this time, it was with a vengeance. I didn’t want to be the “disabled mom”. I wanted to provide my daughter in a way that allowed me to fulfill both her wants and her needs. This determination is what gave me the strength to fight back against this disease in any way that I could. 

Because I cannot afford the standard medical “treatment,” I spent about a year and a half researching different methods of treatment that fall outside of “standard” medicine. One measure I took was giving up meat and dairy products. To date, my daughter and I are both vegetarians and we will remain this way. Making the necessary lifestyle changes was hard at first, but since having done so, I am a lot healthier. I have a better overall feeling and increased pain relief. 

My primary care doctor runs my blood work constantly (almost monthly) to determine any deficiencies I may have. We’ve worked together and made a plan of all the vitamins and supplements I will start taking in order to regain my “normal” life. Although I still have arthritis and nerve damage, I feel far better than I did 3 years ago. My daughter, Mirabella (means divine beauty), is my strength, my joy, my everything. 

***the medical community & treatment***

There’s a constant battle in regards to the legality of treating patients for chronic Lyme disease. LLMD’s all over the country are monopolizing within the medical field by simply acknowledging the chronic form of this disease. Some doctors have lost their license to practice, even after having shown concrete proof of successful treatment and remission. Some physicians who started out as family doctors for patients, have to watch those healthy individuals they’ve known their whole life go through a devastating change after being infected with Lyme. They watch the steady regression in that person’s health even after they have completed the course of antibiotics, which is the form of treatment recommended by the CDC. I believe that it is in that moment, when these physicians see the continued deterioration in their patient’s health,  that they make the choice to stray from the CDC and to treat their patients in a way that they feel would be successful. In the Lyme community, these doctors are few and far between and we (I speak for all of us) view them as our… Saviors, honestly.. 

There are only two Lyme literate medical doctors (LLMD) in Michigan. And, because chronic Lyme disease isn’t a “chronic” disease in the eyes of the Center for Disease Control (CDC), it’s extremely expensive to see these physicians and be treated by them because it’s not covered by insurance. My visits to one of these doctors costs me $400. Because of this, I’ve only been able to go one time. Treatment alone costs upwards of tens of thousands of dollars, and that’s if the treatment is completely successful, without any complications. Because of Lyme, I no longer have an immune system to fight and ward off colds or other diseases. I’m terrified of getting a pic-line placed in my body, to undergo one month’s worth of treatment, only for complications to ensue and ultimately cause more problems than I began with. 

It took me almost two years and countless doctor visits to find ONE physician (excluding the LLMD’s) that believes the disease exists in chronic form. At the time I had no visible signs of illness on the outside, yet inside I felt as though my body was imploding. One doctor told me he believed I was making everything up, another said I was just reaching out for attention. I was devastated. They made me feel as though I was crazy. So much so, that I almost started to believe it myself. 

I do believe treatment protocols developed by the few LLMDs in the US are protocols that are/will be successful. Like I mentioned previously, I’ve eliminated dairy and meat from my diet after reading a book by an LLMD, and it is a change that has helped tremendously.

Sadly, the doctors that take personal time to write books, blog or discuss different protocols are ridiculed by the medical community. So, the accessible information is very limited. I think that reason alone, the ridicule that these doctors face when they do speak out, is what prevents many doctors from “rebelling” against the “normal” medicinal beliefs. 

**the purpose of the awareness ribbon & mayday***

It’s alarming how many people have never heard of this debilitating and growing epidemic. Six years ago, I was one of those people. That is why it is so important for me to spread awareness via the lime green awareness ribbon. I still come across people almost daily who see my pin and inquire about it. Some who even say they weren’t aware HUMANS could contract it, and they only thought of animals (i.e. house pets, deer, etc) having the disease.

The reason thousands of us “Lymies” gather in Washington D.C. is actually simple. We’re asking that the disease be recognized in its chronic form, so that treatment for us can be covered by medical insurance. We also want the CDC to change their “definition” of Lyme Disease to include the chronic form. The Mayday Project is our way of pleading with them. With the rate at which The Mayday Project is growing each year, with more and more patients getting involved, it becomes an increasingly a hard fact to deny that this disease DOES exist in chronic form. It’s very real for the thousands of us struggling with the disease every day, and for the doctors who are fighting for us.

I remember what it was like to be unable to explain to someone what I was feeling on the inside, while I looked “normal” on the outside. 
Many of the Lyme warriors today are so sick that they cannot walk or, in some cases, even talk due to paralysis. 
Too many people have lost their lives as a result of this disease. Whether that is from a heart attack, stroke, co-infections or suicide. Suicide is especially prevalent in the Lyme community, and I can understand why. Some have made the choice to end their lives because they’ve tried to seek treatment and can’t find reliable medical doctors, some actually have no idea where to turn for help, and others simply feel as though they cannot continue living this way.

To me, the ribbon signifies strength, support and bravery for those of diagnosed with chronic Lyme, and for the doctors who believe in us. Above all else, the ribbon signifies the need to spread knowledge about one of the fastest growing epidemics in America.

I’m thankful that I’m able to do the things that many suffering with chronic Lyme disease cannot. I’ve never made it to Mayday, but this year I’m determined to be there, no matter what. I have to have a voice for those who cannot speak (or for those whom we’ve lost to Lyme disease). I have to fight for those who cannot– and I will, no matter what!  
 

Comfortably Numb.

No, this isn’t an ode to Pink Floyd. As I’m sure you’re aware, Lyme disease somehow fools your brain into thinking your emotions are null and void.

 

I go through spurts. I hate myself for it. Sometimes I cannot recognize love I feel for anyone in my family. I cannot cry anymore. Sometimes, I feel nothing. I am UNcomfortably numb. Am I the only one that experiences this? I cannot be.

I’ve managed to become an amazing actor in result of this disease. I smile all the time. I smile when I’m sad, depressed, dying inside, etc… I’ve managed to balance my life to the best of my knowledge and take control of my fate. I’ve made every change that has been presented to me by western medicine & more so from Holistic Medicine. Some are surprised to hear that holistic & natural medicine has changed my life with Lyme in so many ways. My body pain is tolerable without narcotic pain relief. Mind you, I was taking a ridiculous amount of narcotic pain relievers when I first became sick. I didn’t like who I was when I took the medicine. I was edgy, irritable, and just plain mean to those I love.

 

I alienate my family and friends. To the point where I’m surprised they’re even still around and care about me. It took a long time, almost 2 years, for me to end the pity party I gave myself. And I want to make it clear, this blog is not for me to whine. It’s about my struggle with Lyme and what I’ve learned about myself during this process. Sometimes, you just need someone to relate to. And that’s what I’m here for.

 

 

 

·         First, I stopped eating meat and dairy. I know, some of you are shaking your head. You need to understand the impact these make on your pain levels. Dairy has now been proven to increase any arthritic and inflammatory pain tenfold.  Meat is the same way. Plus, have you seen any of those PETA videos? The way we treat animals is disgusting. If you think you’re going to have a hard time quitting meat and dairy, go check out some PETA (People for the Ethical Treatment of Animals) videos. You won’t be able to look or even smell another meat byproduct ever again! I, myself, am not a supporter of PETA for my own personal reasons, but I digress…

 

·         Second, I stopped using chemicals within my body (soda, medicine, toothpaste, processed foods) and the outside(lotions, soap, deodorant, etc.). My skin has become insanely sensitive. Eat as much raw wholesome vegetables and fruit as you can. Disease cannot survive in an alkalized body. NO MORE FAST FOOD! I now make all of my own household items. You name it, I make it. And boy, it makes the BIGGEST DIFFERENCE!

 

·         Third, drink around 100 ounces of water a day. Yes, that’s difficult. Especially the first week. But it IS doable. My energy levels were out. Of. Control. When I was consuming this much water. It was amazing!

 

With all these changes, I’ve noticed the daily brain fog and inability to form sentences have almost completely diminished (obviously). CARE ABOUT YOURSELF! If you don’t care about your own body and mind, why would you expect anyone else to? 

 

Last but not least, accept the fact that your life has changed. Forever. There is no “cure.” But you will be OKAY! You have the ability to make the paradigm of your sickness less of a struggle. There is no magic pill that will make all of this go away. Like I’ve mentioned before, support groups are a MUST! Join them, ASAP! It is OKAY to cry. It is OKAY to feel sad that this happened to *you.* It is OKAY to be angry. That will all go away. The disease will not. Now is the time to make changes.

 


“The Lyme War had Begun.”

“The Lyme War had begun.” -Dr. Horowitz 

   
That is probably my favorite line thus far in the book “Why can’t I get better?” By Doctor Horowitz. I purchased the book on audible.com and I’m enjoying it. I recommend it for all Lymies. Dr. Horowitz is an amazing warrior for the entire Lyme disease community.  Let’s show him some support by purchasing the book. He’s been fighting for us since the beginning of his medical practice. 
Did anyone else read it? Your thoughts?

My story.. 

Here’s a snippet of my “Lyme story” that was given to the journalist… I’m currently working on a Lyme Disease E-book.. Unsure if anyone would actually read it. It would discuss Lyme, my symptoms, and what I did to help myself relieve my symptoms… This snippet is kind of long, but here it goes… If you make it to the end of the excerpt, you’re appreciated! Thank you!!

I contracted Lyme Disease from a tick bite in Gaylord, Michigan in 2008. I went from a normal 22 year old to someone who couldn’t comprehend all the changes that were occurring. I didn’t have time to process how different my life was becoming. 

Everything happened so fast. One minute I’m in a cabin with a few friends having a great time, the next I’m being diagnosed with Lyme Disease- an incurable illness. 


I didn’t notice the life-changing bite until the final day of the vacation. My friends and I had gone to a local water park and it wasn’t until I felt the sting from the chlorine that I looked down at my thigh and noticed a small scab. I figured it was a spider bite and continued having fun. After a few hours, we left the water park and started to head home. 


I remember feeling nauseas, sore, and extremely tired. I brushed it off as effects from the active week we all had. 

The details leading up to urgent care are a bit foggy for me. I had a temperature of 103, and I couldn’t walk on my own. I was feeling immense pain throughout my body. I was confused, couldn’t form sentences and was extremely lethargic. I remember my younger brother, Ryan, calling my parents and they advised him to take me to Urgent Care. 

The doctor asked if he could look at the bite, and when I showed him, I noticed there was a “bulls-eye” ring around the bite, which I hadn’t noticed before. It was so large it covered about half of my thigh. He asked if he could photograph it and I said that was fine. He then called the nurse into the room and she told me they were going to remove the scab, which they did. She showed me the piece of the tick that was attached to the scab, and explained to me how they bury their heads inside the victim when they bite (in order to feed). They told me they were sending the scab and a blood sample to their labs. The doctor gave us a brief description of what Lyme Disease is and wrote me a prescription for Doxycycline, which was an antibiotic that he wanted me to take for 30 days (he made sure to put emphasis on the importance of taking the antibiotic). I didn’t ask many questions, as all I could think about was going home to rest. 

Growing up, I was always stubborn about medication. It would take far more than just a headache for me to resort to taking something like a Tylenol for relief. With that said, I’ll be honest, I only took about a week and a half worth of my Doxycycline prescription, not the full 30 days. The antibiotics made me feel like I had the flu. I felt they were making me worse and not better. Ultimately, I underestimated the consequences of skipping the remaining doses. 

***my symptoms***

The problem with symptoms from Lyme disease is that they vary from day to day. I was very active growing up, I played sports and was always “on the go.” I was a straight “A” student in high school with aspirations and dreams. I still have aspirations and goals, they’re just extremely different now. 


One of the most annoying symptoms I have is the constant feeling of the “common cold”. This particular feeling is one that I experience every day. My body’s new “normal temperature” has changed from the usual 98.6, to 97.1 on a day-to-day basis and my blood pressure is always low (about 95/65). I battle with symptoms of meningitis daily (I.e. constant headaches, pain and stiffness in my neck, fevers, etc.) and I also have many co-infections (the beginning stages of MS, fibromyalgia, babesiosis, etc.).

I’ve lost most of my memories from large chunks of time before I was infected, and I have terrible short-term memory retention. I battle constant chronic fatigue; no matter how many hours of sleep I get per night, I’m always exhausted. 

I’m constantly nauseous, have vertigo, suffer from increased anxiety and have a terribly short attention span. I used to be extremely social and loved hanging out with friends and family. Now, the thought of that alone gives me anxiety. I’ve become reclusive and prefer to be home now rather than in a social setting. While this was a drastic change, at first, I’m okay with it now. Home is where I’m happy. Part of me thinks that is because when I’m at home, I’m in control of my surroundings.

Some days, my neurological symptoms are the ones that are more dominant. When this is the case, I can experience issues with forming sentences or recalling words that I’ve used on a daily basis. I’m also extremely sensitive to light and sound. Loud and spontaneous noises give me anxiety to the point where I need to remove myself from the setting. 

I would say that my nerve damage is probably the worst symptom I deal with on a daily basis. It’s severe and I experience it all over my body. That pain (also my first symptom) was giving me this “my body is going to implode” feeling, in the beginning. It’s so severe that if I were to brush up against someone, I would shudder in pain. Or, for instance, if I were to scratch my hand (even a scratch so tiny, a normal person wouldn’t notice) I would experience pain equivalent to what one would experience if they were stabbed or had their hand sliced open. The disease has particularly impacted my mouth, causing my teeth to be pushed from my gums. It’s disgusting, but it’s true.

About 4 years ago, I went to the doctor for a sinus infection and the doctor gave me some antibiotics to treat the infection. I couldn’t fathom the experience I was about to have as a result of this medication. I remember being horrified, watching my skin actually break open and begin to blister after experiencing what we, in the Lyme community, call a Herx-heimer affect.The bacteria/spirochetes in my blood decided to “fight back” against the abx and caused this reaction. I actually filmed it occurring because I knew that if I were to explain to someone what happened, it would sound so outrageous that they may not believe me (though I wouldn’t blame them). 

This past fall up until now has been the worst for my arthritis. The arthritic pain I experience, particularly in my hands, has taken over my life. It affects my normal, day to day activities. I can barely use a pen/pencil and opening caps or lids of any sort is a daunting and sometimes impossible task. 

As for recent symptoms, my newest is facial palsy. The left lower part of my face is almost completely numb. I notice it the most at night, when my face will begin to tingle and then I’ll lose feeling. 

I was in the emergency room this past week because I had such horrible abdominal pain (worse than my 18 hours of medicine-free child labor) that I couldn’t walk, move or talk. I was terrified. After what felt like an endless amount of tests and X-rays, the doctors are still unsure of what caused it. I was given some medication for pain (Motrin, because I refuse to take narcotics unless the circumstances are dire), and I left. I’m terrified of hospitals, only because if I contract a cold or flu virus, I’m down for weeks instead of a few days like a normal person. When I get sick, I’m sick for weeks to months. This fear, coupled with the fact that I am admittedly stubborn, is why I will only go to the hospital if I absolutely have no other choice.

With this disease, I’ve become a great actor. I’m very good at smiling and pretending I’m fine, while inside, my body and spirit are at war with one another. It took 3.5 years for me to finally admit to my friends and family that I have chronic Lyme disease (excluding my immediate family, because they’ve always known). I didn’t want to be perceived as weak or disabled because of the disease; I didn’t want the “poor you” attention. It took me almost 4 years to get myself to acknowledge and accept that this is my new “norm.”
 
I’ve been told one day, most likely, I’ll be in a wheel chair and will have to live the rest of my life that way. I absolutely refuse to accept that, and I’m going to fight back with every fiber of my being. Not even necessarily for me, but for my daughter. 

***my pregnancy & temporary remission***

Before I became pregnant, I was stuck in this dark, ominous place inside of my head. I was depressed and annoyed, and I couldn’t fully come to terms with the fact that the rest of my life would be different. I didn’t want to. I was stuck in this detrimental “poor me” phase that I couldn’t seem to get out of. 


When I became pregnant I found that my Lyme “symptoms” began to subside. My doctors explained to me that they’ve learned that persons infected with the disease often go into remission while they are pregnant. For this period of time, I finally remembered again what it was like to feel “normal.”

It wasn’t even 30 minutes after my daughter was born that the Lyme returned, and this time, it was with a vengeance. I didn’t want to be the “disabled mom”. I wanted to provide my daughter in a way that allowed me to fulfill both her wants and her needs. This determination is what gave me the strength to fight back against this disease in any way that I could. 

Because I cannot afford the standard medical “treatment,” I spent about a year and a half researching different methods of treatment that fall outside of “standard” medicine. One measure I took was giving up meat and dairy products. To date, my daughter and I are both vegetarians and we will remain this way. Making the necessary lifestyle changes was hard at first, but since having done so, I am a lot healthier. I have a better overall feeling and increased pain relief. 

My primary care doctor runs my blood work constantly (almost monthly) to determine any deficiencies I may have. We’ve worked together and made a plan of all the vitamins and supplements I will start taking in order to regain my “normal” life. Although I still have arthritis and nerve damage, I feel far better than I did 3 years ago. My daughter, Mirabella (means divine beauty), is my strength, my joy, my everything. 

***the medical community & treatment***

There’s a constant battle in regards to the legality of treating patients for chronic Lyme disease. LLMD’s all over the country are monopolizing within the medical field by simply acknowledging the chronic form of this disease. Some doctors have lost their license to practice, even after having shown concrete proof of successful treatment and remission. Some physicians who started out as family doctors for patients, have to watch those healthy individuals they’ve known their whole life go through a devastating change after being infected with Lyme. They watch the steady regression in that person’s health even after they have completed the course of antibiotics, which is the form of treatment recommended by the CDC. I believe that it is in that moment, when these physicians see the continued deterioration in their patient’s health,  that they make the choice to stray from the CDC and to treat their patients in a way that they feel would be successful. In the Lyme community, these doctors are few and far between and we (I speak for all of us) view them as our… Saviors, honestly.. 

There are only two Lyme literate medical doctors (LLMD) in Michigan. And, because chronic Lyme disease isn’t a “chronic” disease in the eyes of the Center for Disease Control (CDC), it’s extremely expensive to see these physicians and be treated by them because it’s not covered by insurance. My visits to one of these doctors costs me $400. Because of this, I’ve only been able to go one time. Treatment alone costs upwards of tens of thousands of dollars, and that’s if the treatment is completely successful, without any complications. Because of Lyme, I no longer have an immune system to fight and ward off colds or other diseases. I’m terrified of getting a pic-line placed in my body, to undergo one month’s worth of treatment, only for complications to ensue and ultimately cause more problems than I began with. 

It took me almost two years and countless doctor visits to find ONE physician (excluding the LLMD’s) that believes the disease exists in chronic form. At the time I had no visible signs of illness on the outside, yet inside I felt as though my body was imploding. One doctor told me he believed I was making everything up, another said I was just reaching out for attention. I was devastated. They made me feel as though I was crazy. So much so, that I almost started to believe it myself. 

I do believe treatment protocols developed by the few LLMDs in the US are protocols that are/will be successful. Like I mentioned previously, I’ve eliminated dairy and meat from my diet after reading a book by an LLMD, and it is a change that has helped tremendously.

Sadly, the doctors that take personal time to write books, blog or discuss different protocols are ridiculed by the medical community. So, the accessible information is very limited. I think that reason alone, the ridicule that these doctors face when they do speak out, is what prevents many doctors from “rebelling” against the “normal” medicinal beliefs. 

**the purpose of the awareness ribbon & mayday***

It’s alarming how many people have never heard of this debilitating and growing epidemic. Six years ago, I was one of those people. That is why it is so important for me to spread awareness via the lime green awareness ribbon. I still come across people almost daily who see my pin and inquire about it. Some who even say they weren’t aware HUMANS could contract it, and they only thought of animals (i.e. house pets, deer, etc) having the disease.

The reason thousands of us “Lymies” gather in Washington D.C. is actually simple. We’re asking that the disease be recognized in its chronic form, so that treatment for us can be covered by medical insurance. We also want the CDC to change their “definition” of Lyme Disease to include the chronic form. The Mayday Project is our way of pleading with them. With the rate at which The Mayday Project is growing each year, with more and more patients getting involved, it becomes an increasingly a hard fact to deny that this disease DOES exist in chronic form. It’s very real for the thousands of us struggling with the disease every day, and for the doctors who are fighting for us.

I remember what it was like to be unable to explain to someone what I was feeling on the inside, while I looked “normal” on the outside. 
Many of the Lyme warriors today are so sick that they cannot walk or, in some cases, even talk due to paralysis. 
Too many people have lost their lives as a result of this disease. Whether that is from a heart attack, stroke, co-infections or suicide. Suicide is especially prevalent in the Lyme community, and I can understand why. Some have made the choice to end their lives because they’ve tried to seek treatment and can’t find reliable medical doctors, some actually have no idea where to turn for help, and others simply feel as though they cannot continue living this way.

To me, the ribbon signifies strength, support and bravery for those of diagnosed with chronic Lyme, and for the doctors who believe in us. Above all else, the ribbon signifies the need to spread knowledge about one of the fastest growing epidemics in America.

I’m thankful that I’m able to do the things that many suffering with chronic Lyme disease cannot. I’ve never made it to Mayday, but this year I’m determined to be there, no matter what. I have to have a voice for those who cannot speak (or for those whom we’ve lost to Lyme disease). I have to fight for those who cannot– and I will, no matter what!