Good Day=Bad Thing?

If you are undergoing treatment for Lyme you know what I'm talking about when I refer to "good day(s)" (sometimes just hours). When you begin treatment for Lyme, you immediately feel worse than you did pre-treatment. And when I say worse, the word torturous comes to mind. But then, every once in a while, you will experience a high more intense than anything you have ever experienced: a good day.

A good day means freedom. You feel unshackled for a small space of time, as if God is giving you a 'time out' (I'm saying that in sports terms, not in parenting terms). You still feel sick, have no energy, and are not your old self. However, you feel so much better that you can actually breathe and feel your muscles relax. You can actually enjoy what you are doing..even the most mundane activities are suddenly fun.

My laughter woke me up yesterday morning. I woke up still smiling and trying to remember if I had a particularly humerus dream. And then it hit me: I felt free. I was laughing because my subconscious had realized that my body and spirit where given a break from battle while I was sleeping. Sometimes this break will only last a few hours, so I use to try and cram as much as I could into the time that I felt good. This is not a good idea--it causes you to crash and then feel worse than you did before your good day.

I have learned to relish these good days and see them as blessings. However, this is a hard lesson to learn.

Good days used to be my curse. I would feel great one day and the next would feel horrible again. It was like someone was teasing me, temporarily releasing me only to shackle me once more...torturing me by changing what was 'normal' for me. I was accustomed to feeling horrible each day, so it was not terribly depressing when I woke up feeling horrible. But giving me a break from the anxiety and pain then quickly taking that freedom away made everything seem so dark. The days after my good day were always the times I was most depressed and withdrawn, feeling cheated and sorry for myself. The good days give you something to compare your normal (bad days) to. It unfortunately makes you realize how sick you really are.

Now good days have become a blessing after altering my way of looking at the situation; a little reconditioning of my thought process. This morning I woke up feeling bad again, but instead of it making me depressed, I was joyful still from yesterday.

So to answer the question, "Can a good day be a bad thing?"...Yes, if you let it be. But by changing your mindset and accepting the good day as a blessing of temporary freedom, a good day will only be a good thing. Now I let my good days be inspirations to keep fighting. They serve as reminders of how amazing it will feel to get my health back, so I enter the bad day ready to battle the spirochetes and parasites in order to regain my health as soon as possible.

Good days are God's gift of hope to us: a brief glimpse of what our future will look like. Good days keep us fighting and knowing that healing is occurring in our bodies.

Lyme in Alabama

It seems as if at least once a week I hear of someone who is suffering and their doctor told them "there is no Lyme Disease in Alabama."

This is an absolutely false statement. I am proof that Lyme exists in Alabama. My family is proof--my father, my sister. If you would like more proof, click on the Alabama Lyme Disease's facebook page here.

If you are sick and your doctor tells you there is no such thing as Lyme disease in Alabama, find another doctor immediately. Lyme is in Alabama, infecting dogs, horses, humans and more. You must be proactive and keep searching until you find an answer.

Sorry for the short post...I just want everyone who reads this to know that there is Lyme in Alabama.

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.

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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. 

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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.

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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