Please Help!

If you are living in the South, please join the Alabama Lyme Disease Association's facebook page by clicking here: Alabama Lyme Disease. If you know someone in our state living with Lyme, please send them to the page. It provides great local information about Lyme disease in the South, most specifically in Alabama. It is so important for us Lymies to join together to fight this battle! As difficult as it is to see that others in our state are suffering, I find it very cathartic knowing that I am not fighting this battle alone.

DO NOT let anyone tell you that "there is no such thing as Lyme in Alabama..."! This page proves that myth to be incorrect, although I cannot tell you how many doctors have falsely told me otherwise.

Spreading awareness and hope about Lyme disease can be one of the biggest ways you can make a difference. If you want to check out the non-profit ALDA's web site, click here: http://www.alabamalymedisease.org/

Thank you for taking the time to click on the page and join our local Lyme community. The ALDA is trying to create a database of all Alabamian's who have had Lyme for research and funding purposes.

Sending love and healing prayer to all Lymies and their friends and family,
Sarah

Docs Say the Darndest Things

I have some incredible doctors in Alabama and in other states. However, I have gone through my fare share of narrow-minded doctors. For years I would go to a doctor and leave in tears (most of the time able to wait until I got into the car before I lost it). Now I have realized that no one knows my body like I do, regardless of medical experience, and not to listen to doctors who let their biases get in the way of medicine. And it is not just Western medicine...I have experienced the same nonsense with some non-traditional practitioners, too. Moral of the story? Please do not let what one doctor says make you upset. Doctors are not perfect and you are in charge of your own health...if what a doctor tells you offends you, find another doctor. Always get a second opinion. And third, fourth, fifth, and sixth when needed. Never give up.

Doctor: "I would say that is just a beer gut. Cut back on the drinking." (regarding extreme stomach distention)
Actuality: Fluid was escaping into my abdomen because of abdominal muscle separation due to three abdominal surgeries (plus I do not drink)

Doctor: "Listen to me. I am a woman. You are a woman. Women get cramps. You have to get over it just like the rest of us. You need to learn to tough things out."
Actuality: Endometriosis, Interstitial Cystitis, Vestibulitis, Complex Ovarian Cysts, Pelvic Congestion, Pelvic Floor Muscle Dysfunction, Appendix Stones (and three abdominal laproscopies)

Doctor(s): "Most college students gain weight. Try working out a little more."
Actuality: Hypothyroidism

Doctor(s): "I do not think you should get tested for Lyme. Lyme doctors take advantage of people who are chronically ill and desperate for a cure. They get a lot of money out of you"; "Lyme Disease does not exist in Alabama"; "Getting tested is not a good idea. It usually produces a false positive then people convince themselves they are sick and act that way their entire life"; "Have you even been in the woods before?!?"
Actuality: I have Lyme disease and several co-infections, including Babesia (and when I am in a healthy state my two favorite things to do are hiking and climbing)

Acupuncturist: "The reason you are sick is because you are poisoning your body with medicine. You need to stop taking your medicine immediately."
Actuality: I did not stop taking my medicine, that would have been irresponsible and a lot of my medicine would need to be titrated off to avoid intense adverse effects.

Acupuncturist: "Your body is rebelling against you. You are sick because you stifled your femininity by entering the masculine roll of playing sports growing up and in high school. Your female reproductive system is refusing to work properly because of the masculine-based decisions you made."
Actuality: I will not even get into this one but she put back the feminist movement a hundred years


Other Family Members with Lyme:

Doctor: "It is most likely just gas pain." (regarding diffuse stomach pains)
Actuality: A Lyme co-infection that causes diffuse stomach pains

Doctor: "Just start taking Folic Acid and you will be fine" (regarding sleeping over 12 hours every day and still feeling exhausted)
Actuality: The major side-effect of the medication she was on was extreme fatigue...which went away once she stopped taking the medicine that particular doctor prescribed

Doctor: "Has your dad been hunting in the Northeast a lot? Because you cannot get Lyme down here. We are not going to test you." (regarding getting tested after our father's diagnosis)
Actuality: She has chronic Lyme Disease and several co-infections


These are just a few of many, many examples that I have witnessed within my own family. I will add more later. Do you have some crazy comments from doctors that you would like to share? Send me a message on facebook by clicking here and I will add it to the post.

Other people's Experiences:

-When Sean was a little baby I had many questions about vaccinations. This one vaccine was all over the news and I had some questions about it. After all, a crazy doctor had scared us parents after publishing an article regarding a link to this vaccine and autism. I made it very clear to the doc that I am for vaccines but had issues with this particular one. After only 3 minutes of "discussions" he turned to me in a stern voice and said, "I have over 300 patients in my practice, do you think you are a better parent or love your child more than the others do?". He then went off on me as to what kind of a parent I was. I was in so much shock that I couldn't defend myself. We left that clinic and found a new pediatrician who came up with a great vaccination schedule for us. (This example is not about Lyme but shows how doctors can bully patients into believing something...luckily he couldn't bully this patient!) 

-We were told that, because our 7 year old son was probably just 'faking' all of his horrible symptoms, "we'd be laughing about the whole thing as we got 10 minutes down the road". It's been close to 3 years now and we're still not laughing... 

Escaping Within Myself

Sorry it has been so long since my last blog post--I have had a rough couple of weeks. For now I do not feel comfortable blogging during the really bad times. For one, my brain fog simply would make the blog post difficult to understand but more importantly I have to admit that I fight to find optimism on those days, and there is a Lyme-induced dark side of myself that is difficult to share completely just yet.

Sometimes the darkness is all-consuming...I do not want to take my supplements (I dare not skip my medicine), I do not want to detox, and I do not want to do anything to take care of myself. There are certain days that are so bad that the "I do not want to" turns into I simply cannot. I cannot take care of myself properly, much less watch television (books at this point are out of the question) or find any other type of distraction. Time seems to hold still at times and then move rapidly at others. I just stare at the ceiling and my body instinctively goes semi-comatose so that I am not fully aware of what is going on--I am just floating, unattached from the world, waiting for the herx or flare up to loosen its grip around my neck. 

A few times it has gotten so bad that my body has become paralyzed and I feel this extraordinary pull to let go. I fight to hang on to consciousness due to fear, but I wonder what would happen if I were to let go. The feeling pulling me is so warm and calming, as if I were floating on water and holding on to a boat with one hand, but with every fiber of my being begging me to release. I have only felt this feeling a few times aside from these 'non-epileptic seizures'...a handful of times during intense meditation and once during a cranio-sacral therapy at Miraval in Arizona. 

Those really bad days, when a herx has completely taken over my body and I do not know when I will be released--hours, days, weeks--the only thing I have found to do when things are this dire is to escape within myself. I am not sure if it is a good thing or a bad thing, but at that point I am forced to just listen to my body. I feel so incredibly fragile, so meek, that I physically and mentally escape within my self for protection and thus I become a temporary shell of my former self. During these times I do not want to talk to anyone or see anyone--I just need to be alone until it is safe to come out again. 

Once I come to a better acceptance of these times, I will write more about the darkness that can envelop you while going through treatment. The darkness far trumps any type of physical pain I have ever felt. For some reason it is a necessary Evil that comes with long-term treatment for Chronic Lyme Disease. 

All of this is hard for me to admit. I want to tell you that I am always strong; always optimistic. Continuously fighting and eternally positive in my outlook. But this disease attacks your brain and at times it feels like the devil is closer to me than God--whispering in my ear, convincing me that this Hell will never end and that I have been utterly abandoned. 

These are the times I have to eventually force myself to be thankful in advance for God healing me. I have found Joel Osteen  and the Jesus Calling: Enjoying Peace in His Presence daily devotional by Sarah Young to be spiritually healing during these times. It lifts me up enough for me to catch my breath and realize that I am one of God's children and for Him nothing is impossible. Gradually, with a lot of prayer and hard work, I am able to settle back in and brace myself to continue this fight with a healthy state of mind and my heart at peace. 

Please Note: I am not giving advice on what to do when you are having a bad herxheimer reaction. I will never give medical advice in this blog and have no medical background. I am simply being honest and sharing my experience to hopefully let those without Lyme understand, to let those going through treatment know that they are not alone, and to prepare those who are about to begin treatment. Everything I write is from my own personal experience unless otherwise expressed. Please note that I am not a doctor and no two cases of Lyme are the same.

Click this link to join us on facebook! 

Weird Lyme Pics

When Life Hands You Lyme.... You have to learn to swallow your pride and be able to laugh at yourself. Here is a compilation of weird side effects from Lyme treatment I have taken pictures of. I will be adding more soon, pride allowing.

"Pregnancy Belly"

Last year after starting my first protocol I started gaining weight like crazy. I usually weigh between 115-120 and am 5'2. Here are some pictures of my 'baby bump'...I couldn't go anywhere without someone asking me when I was due. 

  

This picture is when I was around 130, but within a month I was over 140.

 

This had happened to me several times before I was diagnosed with Lyme (not to such an extent), and my favorite medical explination from a doctor was the official diagnosis of a "beer gut." When I told the doctor that I do not drink he just rolled his eyes and laughed. And then had me take a pregnancy test and sent me away from his office with the advice of "cutting down on the drinking." 

A few months later, I was back down to my usual weight. It turns out I was retaining fluid <not water> and my abdominal muscles were pulled apart during 3 laproscopic surgeries to my abdomen. This gap in the muscles let the fluid leak into my stomach and made me look like an extremely pregnant person.

 But it did not stop there...due to muscle deterioration and loss of appetite, I am currently down to 105 lbs. That is a 30-40 pound swing within 4 months or so. So now I am working on gaining weight. I went from people assuming I was pregnant to people assuming I am anorexic. Treatment is a roller coaster and takes a toll on your body!

"Skin Irritations"

These pictures are of skin irritations that have occurred during treatment. There are many more, I just have not taken pictures of any others. I will add as they show up on me. 

  

Thrush Caused by Candida (Duck Lips)

Want to send your pictures in? Send me a message on our facebook page by clicking HERE.

Babesia: 'Malaria at its Worst'

I have just begun the next phase of my treatment: the fight against Babesia. My father has conquered this co-infection and my sister Julia is ahead of me in treatment for it, so I rely heavily on them while going through this protocol which includes several very aggressive antibiotics and anti-malarial drugs (and yes, it is possible the people at the pharmacy think my family is insane given all the weird medication we are all on). Not to mention I frequently call in my refills, forget, and then call them in later that day. But back to Babesia.

Babesiosis is a co-infection of Lyme which is unfortunately fairly common and can be fatal. Its symptoms mimic Malaria and even look like Malaria under a microscope, making it difficult to distinguish between the two (remember, Lyme is known as "The Great Imitator). This protocol can be one of the worst times of a Lymie's treatment.

This first week of treatment has been pretty rough--the side effects of the medicine plus the herxheimer reactions are a lot to deal with. So I have been doing a lot of research on it...I feel as if the more I understand the disease the better I will be able to cope. For example, did you know that Babesiosis was supposedly one of the Plagues of Ten that were brought to the evil Pharaoh of Egypt? 

The following is from ABC New's article:

 "Babesiosis: Backyard Killer Mimics Malaria and Is on Rise" (click here for entire link): 

• Babesiosis, a co-infection of Lyme, is a potentially deadly tick-borne illness that mimics malaria and can be fatal for those who are immune-compromised (like Lyme patients)
• Babesia is not a new infectious disease: According to Dr. Gary Wormser, chief of infectious diseases at New York Medical College, "One of the earliest reports of this condition is in the Bible and the Plagues of Ten that were imposed on the evil pharaoh of Egypt." 
• Of those who are hospitalized for babesiosis, 1 in 20 dies, according to Wormser. "It's a lot like malaria at its worst."
• Symptoms include a high fever, as well as a powerful headache

This is a video clip from the "Monsters Inside Me" series on Babesiosis and how it moves throughout your body. There are several more YouTube clips on Babesia from Monsters Inside Me (I suggest you look them up!) but they are from home recordings (people holding up a camera to the tv) since sharing these episodes seems to be rather difficult and above my simple knowledge of all things tech.

According to the American Lyme Disease Foundation, "The clinical features of babesiosis are similar to those of malaria and range in severity from asymptomatic to rapidly fatal. Most patients experience a viral infection–like illness with fever, chills, sweats, myalgia, arthralgia, anorexia, nausea, vomiting, or fatigue. On physical examination, fever, splenomegaly, hepatomegaly, or jaundice may be observed. Laboratory findings may include hemolytic anemia with an elevated reticulocyte count, thrombocytopenia, proteinuria, and elevated levels of liver enzymes, blood urea nitrogen, and creatinine. Complications of babesiosis include acute respiratory failure, disseminated intravascular coagulation, congestive heart failure, coma, and renal failure."

I will post more information as I learn it. You can find the scientific explanation anywhere--but that does not help me much, as I did not deem paying attention in any of my science classes as worthy of my time or energy. I do know that side effects of treatment can be extreme--some so much that people have to take months off of treatment. I have eight months ahead of me and am going to try my best to detox like crazy so that I will not have to pause my treatment and delay my healing. 

I ask for your prayers for my entire family as we fight this battle together. I will provide more anecdotal information on my personal Babesia battle as I move on from week one. 

UPDATE: This Babesia treatment has been a lot harder than I was prepared for. I started last Monday and have been in bed since then (10 days so far). My Herx symptoms have been: extreme nausea, loss of appetite, vomiting, weight loss, migraines, light sensitivity, noise sensitivity, irritability, mood swings, brain fog, and exhaustion--I cannot even stand up to brush my teeth! I have been really working on detoxing as much as possible to decrease the symptoms. I have another week and a half off before I start the next round so for now the worst is over :)

Check out my Babesia Update and see how far I have come in my Babesia treatment by clicking here. 

Please click here to follow this blog on facebook!

Do you want to share your story?

Please contact me on our facebook page by clicking here, you can send me a private message.

Have you or a friend/family member been diagnosed with Lyme Disease?
Does your dog have Lyme disease?
Does your horse have Lyme disease?

Sharing your story can be cathartic to you and to all who read about you. For example, my equestrian sister is working on a 'guest blog' about one of her horses who contracted Lyme disease. You can remain as anonoymous as you want and only include information you feel comfortable sharing--it is all up to you. You can send me a few sentences or lengthy essays--all will be accepted.

Please share this with other Lyme warriors who you think might want to read or participate in this blog. Thank you all for your support!

Stories from fellow Lyme Warriors:

Want to share your story? Send me a message on our facebook page. You can opt out of using your name if you wish to remain anonymous. I think it is important for people who do not have Lyme to know that no two cases of Lyme are the same. Thank you for your help! 

Stories from Survivors:

"In 2002, I had a tick in my scalp. Within 5 days, I ran a fever. Then beginning with 10 fingers and 10 toes, the pain in all my joints moved systemically through my body. The pain just to take a step was unbelievable. Luckily for me, my dad is a doctor. My mother had gotten several ticks on a trip to Virginia a few years earlier, and developed symptoms similar to mine. He wrote me a prescription for a megadose of polysporin that I took for a month, and gradually the symtoms subsided. Today I have arthritis in those joints, but no other problems.
My doctor told me that Lyme doesn't exist in Alabama, so I would not have been treated had it not been for my dad."
-Anonymous

Healing Scriptures and Other Healing Words

A side note: Usually Lyme patients are too sick to go to church on a regular basis. Something I would strongly suggest would be to start watching Joel Osteen on Sunday mornings. He is a Christian preacher with an incredibly positive outlook and discusses healing quite often. His sermons can bring positivity into your negative situation--I met him at a book signing and all I could manage to stutter was "You have changed my life" until I broke down in tears. He is a good man and an excellent role model.

Click Here to join us on Facebook!

This post will be a constant work in progress. I will add helpful and healing verses and sayings as I come across them and when I have enough energy to do so. Please, feel free to comment at the end of this post if you have a good verse or saying and I will gladly post it. Going through Lyme treatment is a team effort, and I would love all the help I can get!

Healing Scriptures:

Blessed be The Lord God, the God of Israel, who only does wonderful things. 
Psalms 72:18.

So we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal.

2 Corinthians 4:18

"Who of you by worrying can add a single hour to his life? Since you cannot do this very little thing, why do you worry about the rest?"

Luke 12:25-26

And He said to me, 'My grace is sufficient for you, for My strength is made perfect in weakness.' Therefore most gladly I will rather boast in my infirmities, that the power of Christ may rest upon me.

2 Corinthians 12:9 NASB

He gives strength to the weary and increases the power of the weak. Even youths grow tired and weary, and young men stumble and fall; but those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.

Isaiah 40:29-31

Therefore we do not lose heart. Though outwardly we are waisting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all.

2 Corinthians 4:16-17

"Be still and know that I am God..."

Psalm 46:10

So you shall serve the Lord your God...And I will take sickness away from the midst of you.

Exodus 23:25

And the Lord will take away from you all sickness...

Deuteronomy 7:15

Healing Words:

"All healing is first a healing of the heart." - Carl Townsend

"Although the world is full of suffering, it is also full of the overcoming of it." - Helen Keller

"Healing takes courage, and we all have courage, even if we have to dig a little to find it." - Tori Amos

"Eventually you will come to understand that love heals everything, and love is all there is." - Gary Zukav

"Healing is a matter of time, but it is sometimes also a matter of opportunity." - Hippocrates

"Healing may not be so much about getting better, as about letting go of everything that isn't you - all of the expectations, all of the beliefs - and becoming who you are." - Rachel Naomi Remen

My Curse is also a Blessing: How Lyme has Changed my Life

Since I am being as transparent as possible during my journey through Lyme treatment--which is a very dark and difficult process--I would like to share some of the lightness and joy I have experienced during treatment. I don't want this blog to be all doom and gloom! Just honest.

After I complete my treatment, I know that my life will be so much more fulfilling than if I had never been sick in the first place. Living with Lyme has taught me so many lessons, and already I am a happier person because of it. I have found a closeness with God that I didn't realize was possible and have completely let go of all my fears. One day a few months ago I was having a dark day...Lyme attacks your brain, some people more than others, but the spirochetes can literally change your mood, behavior, personality, etc. It is not "I'm depressed because I'm sick" syndrome..the spirochetes literally attack your nervous system, "producing learning disabilities, mood swings, anxiety and depression, panic attacks, obsessive behavior, sudden rages and other psychiatric diagnoses," according to 'Can A Tick Bite Drive you Crazy?' (click here to read the entire article). I believe this is the most evil aspect of Lyme, I have seen it change personalities (even mine for periods of time) and it truly feels like the Devil is whispering in your ear and has a hold of you. During these times you cannot think straight and can go into fits of Lyme rage. Sorry for going off topic--too much doom and gloom again.

Anyway, I was suffering from a rather gloomy outlook and it seemed as if my treatment would go on forever and it would never end. I was in a very child-like state--feeling so sorry for myself and thinking over and over again that I will never beat this--and while in this state I had an uncontrollable yearning to be held by my father like when I was a child and he would tell me "everything will be okay"...and he seemingly always made things better. I always felt safest that way and when you are a kid you truly believe with all of your heart that your parents can make everything better. 

I called him to talk to him and could not reach him (he was going through treatment, too, and was having a very sick day and could not even talk on the phone). Then I started thinking...what does he feel like when this happens to him? His father passed away a few years ago and his mother passed away when I was young. I just couldn't imagine being parentless and going through all of this. Where do you go when you need the comfort a child receives from their parents? This made me even more depressed and the cycle of darkness continued. 

I remember laying on the bathroom floor in a ball of pain and crying, rocking back and forth, and screaming "Why God? Why!! I cannot do this. I just need someone to hold me and tell me I will be okay." I suddenly realized that the yearning I felt was not for my father on earth, but for my Heavenly Father. At that moment I felt a tremendous weight lifted off my shoulders and a warmth that calmed me down enough to fall asleep. The next morning I woke up and felt something new deep down in my Soul. It was not a belief that I will get better and I will heal, it was a profound and factual knowledge that I WILL conquer this disease, without a doubt. 

I have always felt close to God and prayed in the morning, before meals, and at night. But on that day I felt lifted up so high as that I could see everything from God's perspective. Every day since then I have grown closer and closer to God. And I have learned not to compartmentalize my time with him. Instead of walking with Him Sunday mornings and during quick prayers before meals, I started to learn how to live with him by my side at all times and share with him everything I do and everything I am going through. My yoga and meditation practices even became spiritual...a time to calm my mind and just listen, and to take the time to thank Him for his healing Grace and in advance for my health that I will gain back and my life that I am starting to take back. 

At the time my usual 115 pound frame and small bone structure had ballooned by 25 pounds in a month and a half. I was not eating more or moving less, the antibiotics had just made me retain a massive amount of fluid in my belly (about 6-7 months pregnant looking) and the rest of my body became swollen and stretched so tight it looked like I might burst. I went to my doctor here in town and looked at a chart on her wall--given my short height and my now 140 pound body--I was medically considered overweight. This is quite unusual for someone who received her mother's genes. She is tiny...weighing in at 90 lbs when she married my father, thus I have always had a small bone structure and frame. Every time I looked in the mirror I saw Jessica Simspon waddling around in my reflection (at the time she was VERY pregnant). I also had developed a pretty severe case of acne. The combination left me looking like a very pregnant teenager. My LLMD told me that our bodies detox through our skin and that is its normal. I will eventually do a post about the embarrassing things Lyme does to you to teach you humility and show pictures of my belly, I'm just waiting until my pride allows me to do so. 

But once I started living my life close to God, the image in the mirror changed. This diseased body of mine is just something my Soul is living in while I am on Earth. My soul is not sick, just the capsule that carries it. I am not saying that I was able to get over my pride overnight, but it did make it much easier to handle. By the way, to show you how crazy the treatment can be, I lost all of the weight in a few months by switching antibiotics and now have lost too much weight (I'm closer to 105 right now with no muscle tone). Random weight gain and weight loss occurs in a lot of Lyme patients, as does severe muscle atrophy. 

Before my body put on the brakes and completely quit on me, I was working 60-70 hour work weeks working for my father. He in no way required this of me and even told me to stop working so much, but my overly-compulsive Type A personality would not allow it. I held positions (usually the PR head) on so many different junior boards that I could not keep things straight. I knew I was sick (and had been for years), but found that if I never took a break I couldn't feel the pain as severely. As long as I was going, my mind could trick my body into being numb to pain. It was like a drug I was using to mask my symptoms and after a while my body demanded I stop using. It actually boycotted me doing anything and I was stuck in bed for several months, taking hours to gather up enough energy to walk to the bathroom to bush my teeth and wash my face. This was all before I was diagnosed with Lyme. 

Fast-forward to now: after a lot of hard work and yoga, yoga therapy, ayuverdic therapy, meditation, breathing exercises with a biofeedback machine, etc I have learned to control the beastly Type A overachieving personality and become closer to Type B. This is not something I am doing so that I can get better and get back to work and my old ways--it has been a complete lifestyle change. I have learned to love myself exactly as I am and to not judge my body on what it is going through. I have a greater appreciation of God's creation and even see colors more vividly. I feel so at peace in nature and have a peaceful mind--something that I have never had before. Instead of judging my self-worth based on my accomplishments (I was named Birmingham's top Young Professional and received several community service awards...something at the time that was so important to me but now seems like a past life and means very little to me now), I stopped judging myself all together and learned to love myself as God made me. 

I know that after I am healed I will head down the same path. I have made a major lifestyle change that will remain with me the rest of my life. I am still the same person--a little too competitive and obsessive at times--but on a much lower scale. God has found a light in the darkness of this disease. I will never be the same as I was before and thus my life will be so much more fulfilling. This curse has become my blessing and will change the course of my life forever. My once-guarded heart is opening up again and I am filled with divine joy and love. My life will never be the same.

Join us on facebook by clicking this link!!

Part II: My Public Battle

Click here to read Part I: My Private Struggle

May rolled around and I was handling my treatment much better. It also happened to be Lyme Disease Awareness Month. I was re-watching a speech by Real Housewives of Beverly Hills Yolanda Foster regarding her battle with Lyme, crying with frustration that there are so few advocates for Lyme Disease that have celebrity as a platform. Then it hit me: instead of continuing to hide this disease from others by virtually disappearing from friends and family, I needed to be an advocate. I did not have a platform to be heard by millions, but I do have facebook and can be heard by hundreds. 

I started May off by posting educational information for Lyme Awareness, just as if it were a PR campaign. I had already braced myself for numerous people blocking or de-friending me since I had decided to post at least once or twice a day during the month and assumed that it would annoy most people.

I was astounded by the amount of messages I received after the first few days, there are so many people who wanted to know more. This gave me the courage to start posting as a person with Lyme, not just as a Lyme advocate. The love and support I received was completely overwhelming. People I had not spoken to in years were sending me love, prayers and support. I got phone calls, emails, text messages all wishing me good luck and others saying "Oh, now I get it.." more or less. 

Alabama is severely lacking in Lyme advocates, so I have been emboldened by the love and support I have felt to try and fill that roll. It started off with a few facebook posts and now this blog. When I created the blog a few months ago (but never got around to writing anything), I was going to focus the on Lyme but from an anonymous point of view. Now I have decided to let the world know that I have Lyme Disease. And that it is a serious condition. And I am no longer embarrassed. 

Want to join the effort in a small way? Click here to join When Life Hands You Lyme's facebook page and click here to join Alabama Lyme Disease's facebook page.

I would be selfish not to speak for those infected who do not have a voice. I have met so many Alabamians who have Lyme disease but cannot afford the treatment, as it is not covered by insurance. This disease is deeply political, and I will post on that at another time. But the most important thing right now is for people to learn about Lyme disease--to know it is an epidemic far greater than AIDS, to know that over 200,000 people become infected on a yearly basis, and to know that for the most part the government is ignoring it and the insurance companies will not touch it since the treatment costs would bankrupt them. 

I had a very dear friend approach me about starting a fundraising board to spread awareness and raise much needed money for research. If you are in the Birmingham area and are interested in joining, please let me know by sending me a message here (click the link). More on that later. 

Due to my illness, I have what can be pretty severe cognitive dysfunction. Meaning that right now my brain does not work like it use to. So as a warning, my writing may be all over the place and not make sense at times, but like the disease I accept this and do not judge it. If you have had a conversation with me lately you will know that I am all over the place and often cannot finish my sentences or remember what subject I was even talking about. So this blog may be a rambling mess, but it has been so freeing for me to write about this infectious disease. It is very cathartic for me and something I am doing to help myself and to advocate for others. A weight has been lifted off my shoulders by sharing my experience. Hopefully in doing so I will be able to help you to understand what it is to fight for your life. 

Invisible illnesses are hard to understand, and most people's natural reaction is to back away from the unknown. I pray that the people who read this that have their health will gain a better understanding of how to 'handle' it when a person in their life becomes sick...not necessarily with Lyme but with any other disease that you cannot see with the naked eye. 

Enough for now. God bless you all and please join me in praying for all those infected with Lyme...send them love, support, and healing. A patient's mental state has a lot to do with the success or failure of fighting a disease, so show love and kindness to all you know who are ill. You have no idea how the smallest thing can make a sick person's day. After all, happiness and companionship are far stronger than any pain killer.

Thank you to all of you who have always supported me. I am blessed to have such a wonderful group of people who have never given up on me. You know who you are. God bless you and thank you for giving me the strength to do this. 

Click HERE to join us on facebook!

So You Think You May Have Lyme...Now What?

I have had several people ask me this question. Living in Alabama, it is significantly more difficult to figure out how to approach this topic (compared to states in the Northeast, where you are not labeled as mentally unstable when you bring up the subject of Lyme). However, as with everything else in the world from the latest style trends to medical acceptance...things are slowly trickling down to our state. I have seen a significant change in the past few months alone, so do not let small-minded doctors get you down. Evidence of Alabama starting to 'get it' can be seen on Alabama Lyme Disease's facebook page. The fearless individuals who started the page got the Governor to announce the month of May as Lyme Disease Awareness Month, making it official for our state. They also have achieved non-profit status for the Alabama Lyme Disease Association, which they created.

One of the things that us Lymies MUST DO is protect our doctors. For a while there was somewhat of a witch-hunt for doctors treating Lyme with long-term antibiotics and many Lyme Literate Medical Doctors (LLMDs)--some who were previously world-renowned AIDS researchers, for example--had their medical licenses revoked in their state of practice. So therefore I will never publicly name the doctors in Alabama who are working with my Infectious Disease Specialist in DC to treat me (although I will help you find one if needed in a private message).

Many doctors in Birmingham specifically, but even in other parts of the state, will treat Lyme. They can say they are treating you for multiple auto-immune disorders, or find other creative ways to go out of their way to help you. If you believe you have Lyme and want to be tested, please send me a message and I can point you in the right direction privately. I can also help you find a local doctor to work with your LLMD once you are diagnosed. You can send me a message on this blog's facebook page by clicking here.

I had an hour-long shouting match on the phone with my doctor (an MDVIP doctor...meaning I paid out-of-my pocket for the concierge service). He refused to test me for Lyme, much less send off my blood work to a special Lyme-testing lab. He said "those tests are almost always false positives, and people give up their whole lives because they convince themselves they are sick when it is really all in their heads. People who think they have Lyme are crazy--they are just looking for another way to label their depression. And Lyme doesn't even exist in Alabama." His superior was currently treating my father for Lyme while my dad was on the waiting list for his current LLMD, and it took me reminding him of that and threatening to tell on him to both his superior and MDVIP if he did not test me, along with a slew of other not-so-nice words.

My hope is that you can avoid doing that and going through people questioning your sanity, telling you its simply in your head. Send me a message if you need help. You HAVE to start treatment in a very positive mental state for it to be effective, since treatment is probably the hardest thing you will ever go through. But you will come out on the other side healthy and with a whole new lease on life instead of fighting this alone the rest of your life and risking dying of complications from the disease.

Click here to learn about Lyme disease testing and here to learn six steps on what to do if you think you have Lyme disease (by the way...the second link is from tiredoflyme.com, a great source for all things Lyme.)

1. If you think you have Lyme, you most likely have been through years of treatment for various diseases and aren't getting better. So gather every single test a doctor has ever done on you, especially during the times you felt the most sick. I would suggest faxing in a medical release form, signed, to all of your doctors requesting all lab results be sent to you. You can find sample templates on the Internet that you can tweak for what you need, like this one here. I found doctors responded better when I faxed a form asking them they release my medical records and lab results to me (via mail or fax) and then followed up with a phone call. Otherwise I would have spent days driving around town picking up medical records from all my different doctors, past and present.

From now on, always ask for your lab results on paper to take home with you or to be mailed to you. Create a binder with all of this information. Keeping all of your medical records in one place is a good idea even if you are not chronically ill--we are the ones who should be staying on top of our health, your doctor will not spend as much time looking after your health than you will for yourself. It is a good habit to have.

2. Go get tested. Do not let your doctor talk you into letting a local lab test your blood work or testing it in-house. Your tests must be sent off to special labs that know how to test for Lyme. I would suggest having it sent off to IgeneX. The tests will only be covered by insurance if your test results are positive. Know going into the testing process that you can have Lyme disease even if your test results come back negative (which unfortunately if often).

This is due to where the Lyme is located in your body when you get tested. Lyme can hide out anywhere in your body and is not usually floating around in your blood stream.

DO NOT let your doctor talk you out of getting tested. I have heard several stories from doctors talking their patients out of getting tested and making them feel stupid for wanting to in the first place. If you have to, find another doctor, one that will support you.

3. Set up an appointment with an LLMD (Lyme Literate Medical Doctor) or a LLND (Lyme Literate Naturopathic Doctor). Or pursue a holistic route. This is all up to you. You most likely will be put on a wait-list, but there are things you can do in the meantime to prepare yourself for your visit.

4. Immediately start a gluten-free diet, most lymies have slight to severe gluten intolerances. Especially avoid sugars and wheat. Try to make your lifestyle as healthy as possible. This will save you time on when your doctor will begin treatment--your body has to be in a healthy state to begin treatment. I would also suggest you start a gentle form of yoga (such as restorative yoga) and practice meditation. You need to learn how to calm your body down so that you can handle the treatment.

5. Go to your first appointment with your new Lyme specialist armed with all the information you have collected. Most specialists will diagnose based on ruling out other diseases and looking at all of your symptoms (bring a list of everything you are experiencing, even if it doesn't seem related to Lyme...the symptoms of Lyme are numerous and some of them are pretty weird...so write down EVERYTHING physical, emotional, and mental that you are experiencing that is not normal). A positive Lyme test will help, but is not a necessity since they tend to not be 100% reliable.

6. Find a local doctor that is willing to work with your Lyme doctor since you most likely will have to travel for appointments and will need someone near you that can help with the protocol your Lyme Doc gives you.

If you have any questions, just post them in the comment section below and I will do my best to answer them for you or try to find the answer if I do not know it. Send me a private message if you need information on doctors in Alabama that will test you and ones that will work with your Lyme doctor. I have set up a facebook page where you can message privately if you wish (just click here on the link).

Good luck! And remember, you know your body better than anyone else. If you feel you have Lyme, do not become discouraged and give up. Fight for your right to have a healthy body.

A day in the life of a Lymie: Pills, Pills, Pills...

 My arsenal of weaponry that I use to fight the Lyme spirochetes and co-infections:

When life hands you Lyme, you have to start taking medicine...and a lot of it. I stopped counting the number of pills I take a day because it was messing with my head and making it harder to take them. I have several of those plastic 'weekly' pill containers that are divided into 4 different times of the day.

Besides prescription drugs, I take a lot of vitamins and herbal supplements to keep my body as healthy as possible and to help fight the Lyme (these were prescribed by my LLMD). I also have several tinctures that I put into water and drink on a daily basis and two powdered vitamins (that are best absorbed by the body when mixed with water) that I have to drink 2-3 times a day. Additionally, I give myself a shot every 2-3 days (which quickly got me over my phobia of needles!) and go to the doctor once a week for a transfusion. This does not include the herbal therapy and non-traditional treatments that I do daily (I will save that for another post).

Other Lyme patients are on a much more aggressive treatment (my body cannot handle an overly-aggressive protocol unfortunately). They have ports or pic lines placed in their body to take IV antibiotics. My father had a Groshong Catheter (click here to read what that means) surgically implanted into his chest that would go straight to his heart. He would sit for hours a day with an IV drip of antibiotics connected to his chest. He has finally progressed far enough in his battle that he just had his Groshong line removed. Since he could not get his chest near water for so long, our entire family is eagerly awaiting his first cannon ball into Lake Martin to celebrate!

I hope that this provides you a little insight into the daily life of someone fighting Lyme. It truly is a full-time job!

Please Note:

As you can see in the first picture, I have all the vitamins, supplements, and RXs turned to the side. I want to remind everyone who reads this that I am not a doctor and have no medical background. I cannot safely disclose what all I take--it may be misconstrued as me giving medical advice. Please be sure to talk to your doctor before you begin taking and vitamins or supplements, even if you don't have Lyme. 
This blog is purely anecdotal, meant to provide insight into my personal battle and spread awareness of Chronic Lyme Disease. In no way am I suggesting any type of treatment or protocol. You should always consult your doctor for all medical matters and if you have Lyme you should consult a LLMD before beginning any treatment. 

"Let Thy Food Be Thy Medicine..." -Hippocrates

Upon being diagnosed with Lyme, my LLMD told me to immediately start a gluten-free diet. Being in recovery from self-diagnosed 'Type-A Personality Disorder,' I decided to use this OCD part of my previously overachieving self for the power of good and go all in. (For those who did not know me in my pre-Lyme life, I was working 60-70 hours a week by choice, holding positions on so many charity boards it would make your head spin, and constantly plotting and planning my next project. Looking back, I was coping with the pain by keeping myself so busy that I did not have the chance to slow down and truly realize how badly I was hurting..and hurting myself. More on that later).

My parents called me a "carbo-holic" growing up and would withhold bread rolls from me as a method of cruel and unusual punishment when we would go out to dinner (at this point in my life I was entirely too old to be punished that way...high school, ouch). Anyway, it was highly effective and to me was more inhumane to my teenage mind than being grounded. So at first going gluten-free seemed like another form of torture that I would have to endure thanks to Lyme, but I soon learned that this new diet would make a major impact in my health and the way I felt on a daily basis.

After one week of cutting out all gluten from my diet I was ecstatic--I felt so good that I was convinced I was cured. I do not have Celiac's disease, but most Lyme patients suffer from some form of gluten-intolerance and I certainly fall under that category. What exactly is gluten-free? Click here to find out more. 

Once I began treatment, I realized that the only thing I had control over in my life was what I put in my body. So I began a hard-core "Lyme" diet that consists of aspects of the Paleo Diet and the Super Immunity Diet, among others. Unless the cavemen had access to it, I will not touch it. This means no food that comes in any type of packaging. I only eat organic fruits and veggies from local farms. I am on an intense juicing regimen (which will be another blog post...there is "juicing" and then there is juicing) and eat clean. I try to eat raw (or barely cooked) vegetables for the most part and have started to cut meat slowly out of my diet. I also am 98% dairy free, save a few delicious cheeses that I enjoy every once in a while. Quinoa (keen-wa) has saved me from intense carb cravings and is also an excellent source of protein. You can even find Quinoa pasta and spaghetti--a great replacement when you are craving carbs!

I drink only water, coconut water, and healing herbal teas, aside from the juicing. I get the teas from my Ayuverdic specialist, who blends them herself (after much demand, I will be writing a lengthy blog about her and her healing methods that have been so significant in my healing process). This means no caffeine, alcohol, etc.

So exactly why am I going to such lengths to control my diet? Sugar. The Lyme Spirochetes LOVE sugar and they feed on it. So starving them of it makes them weaker. I suffer the proof of this when I decide to "cheat"...within hours my Lyme symptoms begin to flare up and I pay for it for a few days at the least.

Practicing the belief that food can be medicine is great for everyone. It is preventative medicine, gives you healthy hair, skin, and nails, fights aging, and makes you feel better in general. Plus it is a great way to detox and get all of the kill-off toxins out of your body if you have Lyme. When you take away all of the 'easy' foods that are bad for you, you realize the plethora of options that nature herself has given us. Conventional wisdom says cutting so many things out of your diet leaves you with nothing to eat, but when you 'let thy food by thy medicine' you realize that with creativity your options are endless.

Want to join us on facebook? Click on our new page here. 

Update: Check out this incredible article on Foods with antimicrobial properties. Food IS Medicine! I think you will be surprised about some of them...click here to read more about food that works as antibiotics.

Part I: My Private Struggle

A quick synopsis on why I have never told many people I was sick and why I hid my Lyme Disease diagnosis for a long time:

I have been sick for over 10 years and am an incredibly private person. Until now, I only gave specifics of my illnesses to those closest to me and left everything else very vague. I did it to protect myself--build barriers--so that it could be used against me as it has been before (a story of extreme betrayal that I will save for another time). But most importantly, I now believe I did it because of my pride. I have always taken very good care of my physical-self, working out very hard and eating healthy, and having people know that I was 'sick' was embarrassing to me. Plus, many of my diagnoses and the treatments that come with them are topics that do not belong in civilized conversation, especially with my guy friends (click here to see what I am talking about). It has never been something I was comfortable sharing.

Every few years I would get a handful of diagnoses and begin treatment, but I was still sick despite my multiple doctors best efforts. It was hard to explain why I was still sick after all of the medicine, surgeries, and procedures...I did not know why and my doctors did not know why. Finally, in June of 2012, I was diagnosed by a Lyme Literate Medical Doctor (LLMD) in DC, as having Chronic Lyme Disease and several co-infections, including Babesiosis, a malaria-like parasitic disease caused by infection with Babesia, a genus of protozoal piroplasms. This diagnosis was like an umbrella--it covered every single illness I had ever been diagnosed with, because those illnesses are all symptoms of Chronic Lyme, "The Great Imitator." 

Relieved that I now had a reason to why I wasn't getting any better from previous years of treatment, I began telling my local doctors the 'good news.' For me, being diagnosed with Lyme, something treatable, was a blessing. I had been facing a lifetime of sickness with doctors who had either given up on me or told me we had tried everything possible with no success. I knew that treatment would be grueling, but it was much more favorable to treat it for a few years and move on with my life than to live a life wondering why I would never get well. 

I quickly learned that Lyme Disease carries many negative connotations. I had some doctors tell me that it does not exist and my DC specialist was taking advantage of me for profit. I had close friends and extended family members tell my family that it is simply a 'rich man's disease that does not exist in reality' and others simply would roll their eyes and more or less say 'get over it...'. I was written off by most people, some friends telling others that Lyme was not a big deal and I was being dramatic. I had one friend tell me, "well you have Lyme..and I have fibromyalgia. I don't see what the big deal is. I know what you are going through and do not understand why you have made it out to be such a big thing." Basically, get over it and move on.

I became very isolated--partly due to the reaction of other's to my diagnosis but mostly due to the nature of the treatment (read more about that by clicking here). The protocol to treat Lyme disease is lengthy and actually makes you much worse before you get better. My life was filled with complete darkness and depression--I could barely get out of bed to go to the bathroom, I would have to get back in bed to rest after a simple act of brushing my teeth or washing my face. I was in constant, agonizing pain and faced symptoms I had never even had before. I would have seizures, pass kidney stones, and go in and out of consciousness all in one day. I was too sick to answer the phone, even send a text message. This time was truly the darkest days of my life--I was hopeless. This link takes you to an excellent article which touches on what it is like to be going through treatment: click here. My brain was so foggy that I could not think straight, much less walk straight. I would forget what movie I watched the night before and watch it again all the way through without knowing I had seen it recently. My short-term memory was shot. I was beginning to wonder if I was going crazy. I was desperate--and needed to come up for air. 

I had to quit treatment for a few months, which was devastating given the length of time it was going to take to begin with. It turned out my body could not handle the first step of treatment and I was having severe herxheimer reactions. (Whats a herx? Click here to find out.) I was having a massive healing crisis, the antibiotics were killing off the spirochetes faster than my body could detoxify them. The kill-off produces toxins to be released, and if the amount of toxins get too high, it can wreak havoc on your body. Herxing is good because it means that you are killing the bacteria, but in extreme cases can lead to death.

I slowly came back into the light after putting the treatment on hold. I started seeing an Ayuverdic specialist here in Homewood (she is incredible and will require a separate post just on her healing abilities). I got my body back in balance and began treatment again in March and this time I had learned my lesson. I became obsessive about detoxing and still consider it my full time job (it requires total commitment, and will be discussed in a later post).

Click here to continue to Part II: My Public Battle to learn how I found the bravery to announce my disease to the world on a platform that would never allow me to take it back--facebook and this blog.