My Journey to Heal Lyme Disease
I wanted to share an update on my health. I 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.
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?
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!
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.
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.
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.
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 means 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.
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 his 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.
Lyme and PANS/PANDAS
I also have become aware of another health crisis, which is the growing epidemic of PANS/PANDAS in children. Lyme is a major cause of this syndrome, an Acute Inflammatory Response that causes impulsivity, anxiety, aggression, depression, anger, eating restriction and other significant behavior issues in children or teens. If you think your child has lyme, or has strange sudden onset behavorial changes, you can learn more here.
My journey hasn’t ended, since writing this post I began a new website and weekly newsletter to share health and wellness updates here. I have learned so much through the process, and offer consulting in nutrition and counseling to deal with health issues and coaching to overcome challenges with a christian perspective.
PLEASE VISIT MY HEALTH + WELLNESS WEBSITE TO READ MORE
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.
Our posts contain affiliate links. If you make a purchase after clicking on these links, we will earn a small commission, which helps to keep our content free. You don’t pay a cent more than you would otherwise, since that would be tacky! Please see our full disclosure policy here.