Worn

worn

I have been quite overwhelmed with all that I have to do and remember for my treatment protocol. I can’t keep it straight. I feel awful and the daily B-12 shots don’t seem to be doing their job. I am beyond worn out fighting this battle. I am switching up my meds soon and I hope the next antibiotic will work better for me. I want more good days. This is not the road I want to be on… it seems never-ending.

Some days, I don’t know how to fight.

Some days, I absolutely loathe talking about Lyme Disease.

Some days, I want people to look at me like they used to and not with the sympathetic, “I feel so sorry for you” look… I  hate that look.

Some days, I don’t make many plans because I dread that I will have to cancel them.

Some days, I desperately miss the body and mind I once had that was strong and capable, sharp and dependable.

Some days, I want to think about anything but how my body is failing me.

Some days, I just want my old life back… I miss it more than usual today.

God knew the groanings of my soul this week. I heard this song, for the first time today, and the words fell deep into my heart and gave me peace. I hope it encourages you, no matter what you are facing on your journey. I am thankful that the rest my Father gives is better than any medication, natural remedy or treatment protocol. I am turning my eyes upward and with fragile, trembling hands I cling to the hope that only He can give.

“My prayers are wearing thin. I’m worn before the day begins. I’ve lost my will to fight. I’m worn so, heaven come and flood my eyes…”

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Test Results, Double Rainbows and a Worldwide Protest Rally

Double positive sounds like a wonderful thing, but in the world of Lyme disease and tick-borne illness it is unfortunately the opposite of a double rainbow, double ice cream scoop, or a double order of fries. My IGeneX lab results from my LLMD appointment came in the mail today. It’s awesome to hold in my hand a piece of paper that primary care doctors will respect (a sick girl can hope, right??!) The microscope pictures of spirochetes in my blood apparently meant nothing to all of my doctors except for the one that took them. The only problem is, these blood results that provide medical validation from one of the best labs in the world came about three years too late.

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One of the many reasons IGeneX is far better than other labs is because their Western blot tests for an IgM result, as well as an IgG result and it can detect late stage Lyme. The current Western blot (given by other labs) was specifically designed for early Lyme disease, hence the reason for so many false negatives if symptoms have been present for a long time. This was true in my case. I have had previous doctors test me several times for Lyme over the years and it always came back negative, which is the main reason it took me so long to get an accurate diagnosis. By the time I was tested for Lyme, my body had been fighting it for so long that an early Lyme test kept coming back negative. I was unknowingly battling Late Stage Lyme Disease.

IGeneX Western blot can detect all phases of Lyme, Lyme antibodies from everywhere in the US and even has the ability to detect infection by every strain of the Borrelia bacteria. I know this is Greek to most, it was to me a year ago – but basically, all this means is that “IgG” tests for the presence of past infection and “IgM” tests for a current infection in the body. My results were double positive, meaning I tested positive for both tests and now I have on paper what I already knew, that “Chronic” or “Late Stage” Lyme Disease is the accurate diagnosis. My body could have been fighting this illness for 3 years or 25 years… that is something I will never know because of how the disease works. I believe I am on the right track pursuing treatment with long-term antibiotics. From all the research I have done, long-term/high dose antibiotics is the most effective treatment to kill a bacterial illness as complex and complicated as Tick-Borne Disease.

Most LLMD’s treat based on the severity of symptoms (a clinical diagnosis) regardless of test results because of the unreliability of most diagnostic tests. My LLMD was already treating me for Late Stage Lyme Disease but, I was thrilled to get a blood test that clearly showed that I am, in fact fighting a tick-borne disease. Personally, the test – along with the pages of confusing medical jargon that came with it – was validation like I have never had before. In the end, that is even better than a double rainbow.

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After years of suffering with an invisible illness, I have a piece of paper that definitively unveils the culprit  – from a medical standpoint, anyway. Many people who are unknowingly suffering with Lyme will not even get that far. Because it mimics other diseases, Lyme has been grossly misdiagnosed for decades as MS, Fibromyalgia, Lupus, Parkinson’s, ALS, Chronic Fatigue Syndrome, Arthritis, Bipolar, and many other devastating diseases. I am praying for the day to come when someone can walk into their primary care doctor’s office with a list of symptoms written down (as I did three years ago), and instead of a roll of the eyes and being handed some antidepressants they will get an accurate diagnostic test that will give them the real reason for their drastically altered way of life. I shouldn’t have had to wait years, spent thousands of dollars on doctors, specialists, countless tests, and unecessary treatments and endured the psychological pain, frustration and chaos that an undiagnosed disease creates. If the general public gets proper access to better lab testing, thousands and thousands of people will get the relief, treatment, and hope that a correct diagnosis brings.

I write about the details of Lyme testing to urge you to spread Tick-Borne Disease awareness in your part of the world. Get educated. Get involved. More awareness leads to more knowledge and the more knowledge the general public has, the faster the mainstream medical community will take Lyme Disease sufferers seriously. If we are taken seriously, then hopefully it will become gravely obvious just how important accurate testing is for this deadly disease. I have been brutally honest in my past Lyme posts for a reason. I am passionate about prevention and awareness, but even more passionate about changing the CDC guidelines for Lyme, as well as making sure it is a priority to start funding the research desperately needed for better Tick-Borne Disease testing. If insurance had paid for treatment of this disease, a fellow Lyme fighter would have been better equipped to overcome it… instead he lost his battle last Friday. He was only 29 and left a wife and two young girls. Lack of awareness is the same as ignorance. I must tell the truth and shed light on one of the darkest secrets in the medical world. I cannot, in good conscience, stand by in silence. Lives are being lost. I plead with you to raise your voice with me in this fight.

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These are some of the issues that Lymies are trying to bring awareness:

* Lyme patients from all over the world feel they are being ignored and even being denied treatment for tick borne illnesses such as Lyme Disease, Babesia, Erlichisois, Ricksettia and Bartonella.

* Demands are being made for accurate testing, proper treatments, and admittance that Chronic Lyme Disease is real, serious and potentially fatal.

* Patients want to know why the IDSA is being used by the CDC for their guidelines in the treatment of Lyme Disease, even after Attorney General Blumenthal’s investigation found them biased and the guidelines flawed.

* Lyme patients are asking that the healthcare community be better educated in order to effectively diagnose and treat patients with Chronic Lyme Disease.

* Lyme patients are stating that independent funding for medical research into Lyme Disease testing and treatment are needed.

Below are links about the Worldwide Protest that is happening in May. I encourage you to support those who are fighting and those who have lost their fight with Lyme Disease. 

Love ya’ll!   

XOXO, D

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Facebook Worldwide Protest US
https://www.facebook.com/pages/Worldwide-Lyme-Protest-US/111527755675190?fref=ts

Official Website
http://worldwidelymediseaseprotestus.blogspot.com/

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He IS There…

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My Lyme symptoms and the side effects from starting my new treatment are kicking my butt this week but I’m thankful I have these medications. I know they are doing their job but I yearn to be on the other side of this. I see the bottles sitting on my kitchen counter, my nightstand and on my bathroom sink and I know it’s nothing short of a miracle that they are there, but sometimes it sucks that the meds have to be there in the first place. It feels like a full-time job just to fight the discouragement and depression that comes on so strongly with chronic pain and disease.

It hurts. It’s hard. It’s lonely. But I’m praying. I’m waiting. I’m sitting in expectancy… because I have hope. Hope is a big word that we can cling to when we have nothing left. It’s full and deep, whole and healing. Hope shouts over the negative whispers with life affirming bursts of joy. Hope covers the dark places with light that restores our peace and replaces the fear. Even when my faith wavers and I forget – hope lingers. Even when I lose the strength to try, the Lord gently reminds me He is there as he opens my heart to His hope. No matter how many times I call on Him, no matter how many days I get discouraged and question his ways…or doubt his sovereignty, He is there and I am covered in His love.

I heard this song recently and I wanted to share it. It struck quite a chord with me but I think anyone can relate to the lyrics. We have all been there…whether “there” is chronic illness, past wounds, death of a loved one, a deep regret, a colossal mistake, a tragic season of life… or simply being human in this fallen world – I think this song can apply to all of us. We all get tired of holding on. Sometimes it can be easy to get stuck between not being able to let go but not being willing to move on. How many times have we cried out to him for relief? For answers? For help? How long must we do that? We want to see what God is up to… yesterday! We want to know why He’s not taking the pain away or providing the miracle that we are so desperately crying out for. This world loves quick fixes and instant remedies. We want our wounds healed – STAT. Sometimes, the answers may not come the way we want them to or as quickly – maybe never, but He gives us the strength to keep breathing through it all. He walks beside us – giving us a way to make it through one more day, one more doctor visit, one more hard conversation, one more grieving process, one more goodbye – because that is where the hope lies. We must take one more step and turn over one more stone. Maybe we won’t know this side of heaven why things happen the way they do, but it will develop our character, change our focus and bring us closer to our Father. And that… well, that is worth it.

“Well, everybody’s got a story to tell. And everybody’s got a wound to be healed. I want to believe there’s beauty here. ‘Cause oh, I get so tired of holding on. I can’t let go, I can’t move on. I want to believe there’s meaning here. How many times have you heard me cry out, “God please take this?” How many times have you given me strength to just keep breathing? Oh, I need you. God, I need you now.”  -Plumb

What is your story? Are you crying out to Him? He is there for you. He is there… in the mess and in the hope.

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