Life with a Twist of Lyme Disease– Part 2

 

 

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I am long overdue to share an update on my health. I clearly have procrastinated, honestly because writing about home decor–or just about anything else– is so much more fun. It has been almost 2 years since I wrote my first post about my ongoing battle with chronic lyme disease, if you missed it that post is here, I won’t revisit the beginnings of my infection today.

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I’ll start by saying like many chronically ill people I look fairly healthy, I function pretty normally in society, and I am pretty good at hiding how I am really feeling. I expect some of this could come as a surprise. After all, I DIY things in my house, throw parties and for all intents and purposes, look and seem like a normal, healthy person, right?

 

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In case you are unaware—and I cast no blame as I was clueless 4 years ago before getting bit by a tick in my backyard —that Lyme disease can be a VERY big deal. Lyme, if caught early, is fairly easily treated {for most people} by a major dose of antibiotics—3 to 4 weeks worth, no less. However, many people {like me} don’t even realize they have been bit by a bug the size of a pencil tip, don’t get the telltale bullseye rash, and fail every test for lyme. When strange symptoms randomly develop months later they spend months or even years trying to figure out what is wrong. They are told by the medical community, like I was, that it is all in our heads, or it is MS, or depression…it’s all in my previous post HERE if you want to read what I went through to figure out why out of the blue I suddenly felt awful and never got better.

Over the last two years, since my first post, I have lost count of how many people have reached out to me with their own struggles with the disease or in some cases realized from reading my story that lyme was what was causing their health issues. For that reason alone I should be better about ‘waving the flag’, I suppose!

 

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I want to give an update because at this point I feel like I can give hope about this disease. I have been in treatment for 2 years at this point. I did five months of a combination of pulsed oral antibiotics under the care of a great integrative health Lyme Literate MD . After literally feeling like the load of drugs I was taking was crushing me, we agreed to try the herbal protocol for lyme known as the Cowden Protocol. After a year on Cowden I am happy to report I have made great progress. I am a big fan of that program, it is gentle and seems to work very effectively. I should also mention I follow a strict gluten-free/sugar-free diet, last year stopped working full-time and have made other lifestyle changes over the last few years to help me heal. I will do a follow-up post on how I eat soon as I believe it has helped me tremendously.

I recently took a new lyme test that indicated I have effectively eradicated the lyme ‘bugs’ in my system. While I am hesitant to take much about this disease at face value—there is just so much not known about it—this test justifies moving on to the next stage of treatment which involves cleaning up the damage that the lyme has caused. I am thrilled, after four long years, to finally have something I can hold up as a “win” against this rotten condition.

 

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I do still have a significant amount of auto-immune symptoms that are due, the doctor tells me, to the extensive damage the disease wrecked on my immune system during the two years I was without a diagnosis.  I still tire easily, though thankfully less so than I did before. I have days where my brain is so foggy thanks to the neurological damage I can barely write an email much less a blog post. I still get a hangover after one drink, struggle with feeling depressed, and I still can draw a blank when they ask for my son’s date of birth while making a doctor appointment {that kills me, one of the most significant days of my life and yet I have to dig for it, ahh!}. These are all things that the next level of treatment will work to remedy, my doctor tells me this process is well-researched and straightforward. After two years of literally “well, let’s try this and see what happens”—to the tune of thousands of dollars out of pocket since {most} lyme doctors don’t or can’t take insurance, this all sounds like very good news to me.

I do have days now where I feel pretty good. I have days where I think clearly and feel positive and have been able to accomplish much more than I used to, which for a type A person like me, makes me feel like all is finally right with my world again. I actually have hope that I may not have to sit on the sidelines for the rest of my life as I once imagined I would.

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I still have to be extremely careful with my time and my energy. It is a constant battle to say NO to things {not always saying yes is one of the greatest lessons I have learned from this disease},  though I still take on too much. My husband and I try to utilize the “Spoon Theory” {read that here if you don’t know what I am talking about} in our lives in deciding what we will and won’t do.  We feel guilty when we have to decline things but we know if I don’t, I pay the price. When I crash, usually from a combination of stress and overexertion, it takes several days, or even weeks for me to feel good again. So, I try to be diligent about what I take on, I give ‘spoons’ very carefully these days.

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There is a silver lining in everything, after all God’s plan is perfect and so I long ago accepted this health condition as my reality. I heard someone once say {interestingly enough, a doctor who had lyme} that God tells us to lie down in green pastures, so if you are still sick you need to accept that you are just supposed to continue to lay down. It’s not always easy, but I know that in my life there is a purpose in this. Looking back over the last four years I can see that God showed up in my life SO. MANY. TIMES. In really HUGE, stunning ways—for that alone I am humbled and grateful.

 

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{This printable available HERE}

My life is very different than I think it would have been had I not gotten sick. However, I love my life and I am so deeply appreciative for the good days, gratitude changes your outlook in so many ways. I look back at the last four years and honestly, I wonder how I made it through it, so much credit is due to the amazing support system I am fortunate enough to have.  I marvel that my kids have survived and even thrived NOT having a “supermom” over the last few years {chew on that—we moms actually may not have to be everything all the time!}, do you think there is a life lesson in that, perhaps?

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Finally, since May is Lyme Disease Awareness month and over the next few months hundreds of thousands of people will be infected due to the nymph stage of the ticks at this time, I need to wrap this post up on my GREAT BIG GIANT SOAP BOX.

I am part of a number of Lyme Disease Groups on Facebook for informational purposes. There are literally thousands of people in those groups with the same symptoms, fighting to afford medical care {out of pocket treatment costs could be as high as $30,000 a year}, fighting to get better, fighting for disability to afford just to eat because they can’t work, or to keep their children, and mostly just looking for some hope. It is not a happy disease. I just don’t know how in America, where we have one of the best medical systems in the world, one small group of doctors {namely the Infectious Disease practitioners}—ones with substantiated financial ties to companies that make the unreliable lyme tests—can perpetuate a myth that chronic lyme disease doesn’t exist!  This prevents insurance from paying for treatment, when literally hundreds of thousands of people are suffering, and all from the same documented symptoms.

This week is the MayDay Protest at the Infectious Disease Society of America and the CDC in Atlanta, protestors hoping to finally get the guidelines changed. I simply CAN NOT believe that we can’t do better. The leading cause of death from Lyme Disease is from suicide, because so many patients have no hope and no way to get better.

Chronic Lyme Disease (PRNewsFoto/The Mayday Project)

Chronic Lyme Disease (PRNewsFoto/The Mayday Project)

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I’ll share one last story with you to put the current mess of lyme disease in perspective. Last summer my Dad got bit by a tick and developed a bullseye rash a few days later while on vacation. An Urgent Care gave him an antibiotic prescription to tide him over until he could see his regular doctor. His Primary Care doctor—one he has seen for years and greatly respects— said, “Oh no, you don’t have anything to worry about, that wasn’t a bullseye rash, that was just your skin reaction to the tick bite”  {WHAT???} and went on to say there was no need for further antibiotics.  My Dad obviously knowing better, went the safe vs. sorry route and stayed on the meds. Two weeks later he went in for a pre-op appointment for a long-scheduled shoulder surgery. That surgeon found out he was finishing antibiotics and immediately postponed his surgery. His reaction was the complete opposite of the Primary Care, he told him “ Lyme disease is a BIG deal—you need to deal with that first, get better then we’ll revisit surgery down the road”. That example shows why so many people are very sick; had he believed the first doctor he’d likely be where I was a few years ago, too sick to get out of bed most days with no idea what was wrong.

 

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Thank you for reading all this. I know this isn’t what you come here to read about, and I appreciate that you would allow me to share my story with you today. If it helps just one person, I am glad to do it.

For more information, check out my “Resources for Healing” Page. You are welcome to email me directly {amy@11magnolialane.com} if you think you may be dealing with lyme, it may take me a while to respond but I will do my best.

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Comments

  1. Amy, You sharing your story no doubt will help others. the practice treating both myself and my youngest treat a great deal of lyme disease patients. the diagnostic technician was telling us about a young woman with lyme that was having difficulty even speaking. they used bio feedback after brain mapping to reverse the symptoms. she can now talk again. it is a very scary disease. my youngest recently got bit by something, trust me, she was sure to ask if could be a tick bite!!! they do not believe so, but have started her on antibiotics they felt whatever it was had become infected. both girls are also being tested for hashimotos. so many have reached out to us that have it and it has made all the difference. thanks for sharing your story!

    • Thanks Lauren, I hope that you get answers soon! Sounds like you have good doctors. Prayers for recovery 🙂 XO, Amy

  2. AMY, keep sharing, it is important that we know and know where to get information. I have shared your story with others. They appreciated it and shared it. Now I will add your follow up to them.
    Sorry to hear about your dad, but know that he was smart to stay on antibiotics and that his surgeon was well read….find a general practitioner who know what he is talking about.

  3. Friends – my hubby got Lyme ‘somehow’ years ago though he is a ‘nature boy.’ There were easily two years of his life he was not ‘living’ per se. Every month it was something else and going to another doctor. At some point he was tired of going to doctors. He found a support group 2 hours from our home. These last two years, however, he is faring well which is encouraging. I’m not happy that he continues to return to the woods, and yet he does. He’s more cautious in prepping before going to the woods and does a tick check when coming home. He, too, never aware when or where he was bit and has no recall of a rash either. I plan to share this with him and another friend who is dealing with this as well. Knowledge is power – so share the knowledge so everyone can be more informed and be persistent with the doctor when he/she said it’s not lyme because it may very well be it is.

    • Yes–you are so right Julie! Thank you. So sorry about your husband, though my husband is the same kind of “nature” guy (how is it I have lyme and he doesn’t??? LOL) he wears tick resistant clothing which eases my mind but there is only so much you can do. Thanks for your sweet note and I hope he continues to be on the mend. It takes a LONG time! XO, Amy

  4. I’m so sorry you are going through this. In my family, we have multiple autoimmune diseases. The fatigue is unbelievable, yet we don’t look sick. Most people do not understand that. Many years back, we had an outbreak of ticks in our yard. It took us months to get that under control. Fortunately, none of us were bitten.

    • Cindy–so glad you at least dodged the lyme bullet but sorry for your struggles. It is hard to fake it day after day, isn’t it? 🙂 Hang in there…thanks for your note and take good care. XO, Amy

  5. aimee reyes says:

    Thank you for sharing, Amy. A good friend’s daughter (and possibly her older daughter) was just diagnosed after many years of strange symptoms. The CDC tests came back negative and she had to pay out of pocket for the a Test in ca. Finally she has a diagnosis but is running into a lot of drs like your dad who tell her, “accept it” and “she will grow out of it”. I will be passing this story on to her because her daughter has many of the same neurological symptoms you describe. I also want her to be aware of the new process you are trying. She is also keeping her daughter on a strict diet. The best part really is that we have our faith, because like I keep saying, what would we do without that? Thank you for tying that into this post. Be well and God bless you!

    • Thanks Aimee–yes you are right, faith is the only thing that can get you through something like this! Best wishes to your friend’s family. The CDC tests are useless in many ways, I hope they find a good doctor and keep plugging away! Best,
      Amy

  6. Omgosh, I’m sorry that happened to you, it sounds like you were/are living a nightmare. I’ve heard of other diseases that my friends have and they ran into the very same brick wall you did with the insurance company denying coverage because the same reasons ? All the research money goes to everything else, but continue to fund raise and raise awareness. Volunteer for a big money disease fundraiser to learn how they raise money? It’s all local, call your congressman. Baby steps… Good luck.

    • Thanks, June. Yes there has been some very progressive legislation coming out of my state (Virginia) to protect Lyme patients actually. I am hopeful it will reach beyond our area. Thanks for your note.
      Amy

  7. Donna Marie says:

    Thank You and may God bless.

  8. Tom Hawkins says:

    My wife and I are very proud of our daughter and her ability to share her experience. She battled and fought through a crisis that should not have occurred. Amy’s perseverance , faith and dedication to her family is clear in her message. as parents we want our children to be happy, healthy and mature. When something stands in the way of those desires, we wonder how they will cope. For Sherry and I, our Amy has successfully navigated her battle field. For that we thank God. Hopefully her message will help others who face their own personal battles.

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