Life with a Twist of Lyme Disease– Part 2, Healing My Lyme Disease and AutoImmune Issues

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 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 two 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. You can read about how I eat to control my symptoms and help my health HERE.

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 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!}. 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.

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.

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.

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?

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 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 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.

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.

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.

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