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.
Chronic Lyme Disease (PRNewsFoto/The Mayday Project)
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.
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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
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.
Yes–my Mom and I both think maybe a new GP is in order 🙂 Thanks, Marion. I appreciate your kind words!
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
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
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
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
Thank You and may God bless.
Thank you Donna Marie 🙂
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.
I know this is an older post, so I hope you see this comment. What was the test that ultimately proved you had Lyme? My husband has had two traditional tests that came back negative (despite clear bullseye rash). He’s since been diagnosed with RA. It’s all very frustrating. Thanks in advance for any response.
Amy –
I just found your story. This has been my story for 5 years. Working with LLMD .
My faith has carried me . Your story makes me feel more normal.
Cow den protocol was ALL you used to get better ?
If GOD healed you, HE will heal me !
Any input appreciated .
Blessings,
Lisa
Hi Lisa,
I am so so sorry you are sick. It is an incredibly hard disease. I took 6 months of strong antibiotics then I did the Cowden, so I think it was the combination of both. I would not say I am completely healed, but I am so much better. I am waiting on genetic test results from my LLMD right now that will give a better indication of what stage I am in and then hope to finish some of what he says will be final treatments. Right now my diagnosis is CIRS (so you can google it, and check out survivingmold.com), which seems to be what they sometimes call post-lyme syndrome now. You probably know of the mold link and how it impedes recovering from lyme. There is lots of good info on that site. I am sure you will get healed, keep moving forward and keep me posted on your recovery. Thanks for your note! XO, Amy
Thank you so much for posting. I too have been battling Lyme and Bartonella for the last year and recently discovered my daughter and my husband have it as well. None of us remember ever being bitten by a tick. Worse, our primary doctor continues to sate “there is no Lyme in Northern California”. Unbelievable. Anyway, I realize your post is from several years ago and I am just finding it now. I would love to know how you are doing this far down the road. We have found a good LLMD and are treating but it’s such a long road. Again, thank you for posting your story. I would love to hear an update.
Hi Cindy, thank you for your note. I am so sorry to hear that you and your family is struggling with lyme, and that is crazy about your primary doctor but sadly, there is so much bad information especially within the medical profession. It’s a battle on so many different levels.
I need to write up an update—I have mostly good news to share though I am about to start what will hopefully be my final stage of treatment. It’s a long one, it could take many months so I don’t want to jump the gun and post about it until I am toward the end. It has taken me awhile to get here but I have taken some long breaks in order to stay sane. My short story (as you gathered from my posts) is pulsed antibiotics, then the Cowden protocol then lifestyle adjustments etc. and now I am beginning what is known as VIP treatment. There is information on it at http://www.survivingmold.com, lyme and mold being so closely related. While I don’t have mold exposure markers, the lyme has created the same issues (verified by the eye test on that site) so I am now in that treatment bucket so to speak. My doctor thinks that it will help since I still deal with fatigue and brain fog but overall, I am much better than I was.
I am glad to hear you have a good doctor, I think that is so important. It does take awhile but hang in there and continue to research and advocate for yourself and your family, you will get better! Stay in touch 🙂
XO,
Amy