Do you ever feel like living with a chronic illness is a long drawn out journey with no end in sight? You feel like going another mile is just way too overwhelming and you’re so focused on your pain that you can’t look around to view the scenery.
Are you struggling to find a diagnosis or worse yet, to find anyone who will believe you? Maybe you’ve been told you have late-stage Lyme Disease and co-infections but you’re so sick that you’re struggling to figure out what that even means or what you’re supposed to do about it. You’re faced with which protocol to follow, which vitamins and minerals you’re deficient in and wondering if your body will even absorb them?
I’ve been there! I was so incredibly sick, I honestly thought I was dying. I tried so hard on my own, even with my cognitive impairment, to figure out what I as supposed to do. Thankfully, at the time a doctor at my primary care practice had an understanding of Lyme disease and co-infections and believed me when I told her how sick I was. When my Lyme test came back without the 5 positive CDC required bands she knew that even a few bands meant I had the infection.
This was only the beginning of my journey and since then I’ve had huge gains towards my healing. I shared my early story here on this blog and I’ve shared bits and pieces of my journey over the past 2 years. Recently, I was upfront about some challenges I’m having and how I’ve relapsed with Bartonella and Epstein Barr Virus.
Living with any chronic illness is a journey of good days and bad, progress and sometimes relapse.
Most days I do just fine, I make healthy meals, remember my supplements and take my homeopathic remedies. Other days, days like today, I just want to crawl back in bed. I don’t want to use up my limited energy trying to get through my daily schedule. The school year is even more difficult with homeschooling, dropping kids off and picking them up, preparing food and the many other tasks that need immediate attention.
I can become like a rebellious child when I don’t feel well. I don’t want to remember to take my supplements and while I’ve become a pro at swallowing a handful at a time I don’t want to. I don’t want to make decisions today, not even about what to make for dinner. And my future, well, there are days when I don’t even want to think about what it might hold for me because when I don’t feel well, I worry that I won’t get over this.
On the good days, Oh, I love thinking about the future! I find myself dreaming about all the things I want to do and places I want to go. I create a massive to-do list and I literally wear myself out trying to catch up on all that hasn’t been done. I make plans with friends, I go out more with my kids and I even get back to exercising.
My life can be one crazy adventure of ups and downs, feeling great and then feeling miserable, feeling positive and then feeling like my whole world is falling apart. Honestly, it can get kind of exhausting. Do you ever feel that way? Would it make you feel better to know that we’re not alone? I get to hear from many of you and I know that you’re going through this too. Some of you haven’t had positive gains yet, you’ve run out of money, you may have lost everything, you can’t see the light at the end of the tunnel and so your discouragement is mounting!
May I remind you that our future is in God’s hands! It’s so easy to get on that “woes me” bandwagon. If we’re not careful we can spiral into depression over our physical limitations. We can grow weary and bitter.
When I heard those word from the doctor a month ago, “We need to rule out MS”, my brain immediately went to the negative. “Oh no, what if I really do have MS? What am I going to do? What if I never get better? What if everyone gets annoyed with me if I’m having to rely on them for help? What kind of treatment will I have to have?” Then my brain switched gears and I remembered – “It’s not MS, I know it’s neuro-Lyme, it’s often misdiagnosed, I’m going to be fine, I’ve already done it before!”
My well-being could go downhill fast with those kinds of thoughts creeping in. So, instead of listening to the negativity, I’ve chosen to turn this into “just another journey” on the road to lasting recovery and I’ve decided to take the scenic route so to speak.
I pulled out my dusty gratitude journal, the one I started in 2014 and every once in a while find sitting under a pile of books. It reminds me that I should write down a few things I’m grateful for. I’ve read about the benefits of keeping a gratitude journal and I think it would be worthwhile to once again list those things I’m grateful for each day, I know they far outweigh my complaints section.
I started doing some Insta-stories on Instagram because after all, sharing what I’m eating is just way more fun than sitting down to a plate of healthy food right? At least this way I’ll take the time to make it pretty and I might possibly pull out one of my special “girlfriend” plates from the china hutch. Those are the beautiful plates I save for special times with my girls or my sweet friends who come to visit.
I’ve been listening to the audio book, The Wahls Protocol* by Terry Wahls. It’s fascinating and I personally think everyone should read or listen to this book even if you don’t have MS (Multiple Sclerosis). She gives a fantastic description of autoimmune disease and what happens at the cellular level regardless of what kind of autoimmune disease you have. She even mentions Lyme disease and how many Lyme sufferers are first misdiagnosed with MS. (*Affiliate Link)Therefore encourage one another and build one another up, just as you are doing. 1… Click To Tweet
Shortly after my visit with the doctor, God put it on the heart of a good friend to contact me, which is always a huge blessing. She’s a very experienced health professional and Naturopathic Doctor. She gives me perspective, infuses me with a little grace and reminds me of God’s love for me. She steers me in the right direction and helps me choose the supplements I should take so I’m not wasting money. She’s the one who convinced me, a long time ago, to look to food for my nutritional needs and then supplement when necessary.
I started a blog prayer journal where I’m writing in each person who contacts me and shares their experience with Lyme. I’m going to pray for those of you I meet either in person or online.
After listening to The Chronic Lyme Disease Summit2, I recognize that my stressful lifestyle, my type A personality, and my need to help everyone else at the expense of my own health, has contributed to my relapse.Healing from Lyme becomes a lifestyle and the choices you make become your journey.… Click To Tweet
Some days it takes a lot of work for me to control my thoughts and work on being positive but it’s so vitally important for healing. It takes, even more, work for me to incorporate times of rest and relaxation. I am certain the work I’m doing to change my lifestyle and my thoughts will be worth it and I know that it will make this journey much more pleasant.
After all, why stick to the highway when you can take the scenic route and make the best out of the ride along the way. We’re all in this together. You have to remember to treat yourself as though you always need to heal because healing from tick-borne infections is truly a lifestyle.
It’s Sunday night, there’s a full Hunter’s Moon tonight and quite honestly I’m more than just a bit overwhelmed!
I’ve felt sluggish and tired all week, my kids are complaining of a return of symptoms and everyone has been irritable and argumentative. My little guy has had so much pain this weekend and tonight he hurt so badly that we had to give him Motrin and soak him in an Epsom salt bath.
It’s so heartbreaking to see your child suffer in pain, especially when it’s caused by a tick bite.
In the fall of 2009 I was finally diagnosed with chronic Lyme disease and co-infections after a long, frustrating two years visiting different doctors, trying to get a diagnosis for my declining health.
While I still have pain off and on, most days I don’t feel so much like a Lymie, especially since many of my friends have similar aches and pains. I’m not going to say we’re getting older but you know, it happens.
When I was first diagnosed I agreed to high doses of antibiotics. I acted out of fear and ignorance, I thought this was the only way I would regain my health.
Obviously, at that time I had no idea what I was in for, nor did I know what Lyme disease was.
I remember that day like it was yesterday. There I was sitting in the doctor’s office waiting as she reviewed my labs, watching as she shook her head indicating she knew what the numbers on the page meant.
Finally, she said, “Well, you definitely have a Lyme infection, and based on these numbers (pointing at the labs) you’ve had it for quite some time!”
After hearing her words, a sigh of relief came over me and I was actually happy. For two years I had bounced around to different doctors, had labs drawn multiple times and practically lived at the physical therapist’s office.
During this time, each doctor evaluated me according to their specialty and either said they didn’t know why I was so sick and sent me to another specialist or they would diagnose me as psychosomatic, which means they thought the cause of my illness was in my head and caused by STRESS.
I was livid because I was really very sick. I knew what stress was, I had grown up and worked in the Washington DC area. I knew that what I was experiencing was not stress. Honestly the only thing that was causing me stress at the time was their misdiagnosis and lack of compassion.
At the end of the two-year mark when I finally had a positive lab test for Lyme, I initially had an appointment with my primary care physician who stated in a matter of fact way, “Your test is positive for Lyme but I believe this is a false positive and that you’re just stressed out because you have 4 children, 1 being a new baby and you’re trying to homeschool!”
Can you imagine being told that? I couldn’t walk without intense pain, every time I turned my head I strained my neck muscles; my shoulder, elbow and hip felt broken, my entire body throbbed in pain. I slept for 14- 20 hours a day, I had no memories of past events or conversations and could not process simple thoughts and tasks. I had a long list of other symptoms that none of my doctors could explain.
I verbalized my disagreement and frustration with this doctor and I stated that I would be getting a second opinion. She recommended the doctor down the hall who had been treating people with Lyme.
A few weeks later it was confirmed that I did indeed have Lyme.
I was so happy that I finally had a diagnosis, someone actually believed me and I felt that now I could begin to heal.
Most often, Lyme disease goes undiagnosed or misdiagnosed and can be confused with almost any other disease including cancer. It can affect every part of the body and every system and can cause inflammatory markers on lab tests to make doctors believe you have a different disease or condition.
Never settle for the “stress” diagnosis if you’re really sick and have multiple unexplained symptoms. Listen to your gut and get as many opinions as you can until you are satisfied.
Knowing what I know now through research and experience, I always think tick-borne infections first and then work my way backwards. Many doctors believe that other biting insects like flies, spiders, fleas and mosquitoes can transmit these diseases and that they are more common than previously thought.
The CDC states that each year 300,000 people are diagnosed with Lyme. This number is grossly understated because approximately 70% of those tested for Lyme are missed.
I always say, know your Lyme facts, educate yourself and be prepared before you need to.
Read more about why you can’t trust a Lyme test: Testing for Lyme Disease
Want to know how to find a doctor? Check out Looking for a Lyme Doctor
Here’s a handy print out to take the doctor with you if you’ve been bitten by a tick: Tick Treatment
Learn how to recognize Lyme disease in your child. Recognizing Lyme in Children
Healing From Lyme Disease, Co-infections and Adrenal Fatigue
Being the wife and mom of a household full of Lymies has been a hard road for sure. For years I have spent countless hours in research, taking myself and my children to doctors, filling prescriptions, ordering herbs and supplements, organizing medicine boxes, keeping pain journals and charts, homeschooling one-on-one, and doing everything else I could to help get us all better from Lyme and co-infections.
For years I have spent countless hours in research, taking myself and my children to doctors, filling prescriptions, ordering herbs and supplements, organizing medicine boxes, keeping pain journals and charts, homeschooling one-on-one, and doing everything else I could to help get us all better from Lyme and co-infections.
Early on I was able to focus on my own healing and healthy living but as we diagnosed each family member it became more and more difficult to find time for self-care.
My 2nd daughter was very ill and spent much of her time in bed not able to lift her head, some nights she was up all night vomiting, she was weak, fatigued and filled with pain.
By the time my 3rd daughter was overcome by psychiatric symptoms I found it was impossible to take care of myself.
My daughter needed my attention and care almost all day and much of the night. Every morning I was greeted with her screams of anxiety and pleas for me to come help her get out of bed.
I was living on a thread; overloaded, frustrated and stressed out. I could feel the desperation deep inside; I was desperate for answers, for help, healing, and peace.
My whole entire life was consumed with caring for my family and while I made the effort to eat as healthy as possible and took small bits of time here and there to take breaks when I could, it wasn’t enough.
I knew that my lifestyle would eventually catch up with me and that I was living with way too much stress.
I could feel my own anxieties and exhaustion on a daily basis. I was an impatient mom until I learned that my impatience and anger made my daughter many times worse.
I was forced to take deep breaths and wait quietly for the tantrum to end. I was forced to patiently and gently speak to my daughter, to walk her through her therapy techniques.
Little did I know that learning this calming behavior was helpful for me too, it taught me to calm myself and not take on all of my daughter’s stress and chaos.
Now everyone has gotten better and my daughter no longer needs me 24/7. The only thing she needs from me now are a lot of hugs, help with school, and to listen to the new songs she wrote. I like my new responsibilities.
I’m no longer living in a constant fight or flight mode but I discovered recently that because I lived this way for so long my adrenals are fatigued, my emotions are raw and my body is exhausted.
Many of my initial Lyme symptoms have returned with a vengeance and I have a deep longing to hibernate along with the rest of nature.
So now it’s my turn to care for myself, to be gentle with myself, to allow myself to rest, to heal and to seek the care that I need.
It’s really hard for me to kick my feet up and read or take a nap, I always feel guilty.
What I’ve discovered is that my kids and my husband are always happier when I’m taking care of myself. They actually like to see me rest.
The day I stayed in my PJ’s all day gave me a glimpse of that. My husband kept telling me he was proud of me for taking the day to relax. My daughters walked by, smiled and said, “Mom I like how you changed into new PJ’s for the day,” my son kept walking by me smiling and he told me he liked me sitting.
The other day I told my son we were doing school snuggled up in a blanket because I didn’t feel well. His reply was a happy “Yes!” with the whole bent arm thing going on. He said he loved when I sat and relaxed because we could be together.
I hope you’ll find time to take care of yourself even if you have to take care of others. It is really important.
As I learn more about my adrenals and what it is I need to do to heal and recover I’ll share with you. You may have already walked this journey and have great advice for me. I ‘d love to hear from you.
In some ways, it seems so long ago when I first began getting sick and having intense pain from Lyme disease. It’s hard to remember details of those difficult days, pain and fatigue can do that to you.
One thing I clearly remember is the love and care my family showed me when my health was declining.
It wasn’t just my husband and children but also my parents and other extended family members. I realize how chronic illness can negatively affect relationships and especially a marriage so believe me I know how blessed I am.
When my symptoms were at their worst my whole life was impacted. I couldn’t keep up with my daily routine and most of the time I didn’t even realize it.I was in severe pain all the time and was completely wiped out with fatigue.
I was sure I had early onset dementia, I missed doctor appointments, didn’t know what to buy at the grocery store and couldn’t remember anything, including conversations that took place 5 minutes ago. I didn’t recognize where I was when driving on roads I had traveled for over 10 years. It was a very scary thing.My husband recognized that my health was declining and went into action mode.
He helped me figure out what I needed to do each day, encouraged me to make specific doctor appointments, helped in the evening with the kids, dinner, and cleaning and he prayed with me and for me.
Now please don’t get me wrong, not everything got done. Dinner would often be prepared processed meals or take out. The house didn’t get a good deep scrubbing and only the really important things got done.
I know this was a really hard time for my husband, after all, watching your spouse’s health deteriorate while not knowing why can be just as difficult as being the one who is sick.
I really didn’t think much about it until the other day when I read an article about someone’s experience with how they had been treated badly by family and friends when they shared the news of their illness.
While I didn’t realize it at the time, my husband showed great love and care for me and has continued to do so through my illness even as he was later diagnosed with Lyme and coinfections.
He believed me when I explained my pain and fatigue. He rallied our children together, made a chore chart and encouraged the children to help Mommy as much as possible.
My children were young but they helped as much as they could. They would get things for me, helped care for their new little brother, rubbed my neck, made me soup, and prayed for me.
When I finally got a diagnosis of Lyme Disease we didn’t know what that meant at the time but we were relieved that there was a reason for my declining health and felt that now we could address it and I would get better.
I remember telling extended family and friends who were also very supportive.
My extended family was empathetic and encouraging. They listened, they hugged me, they told me they’d be praying for me and that they were sorry I had to go through this. They asked me what this meant, what the treatment was and what my symptoms were.
They continue to be supportive and loving even still. I can’t visit as often as they’d like and sometimes I wouldn’t be able to make a special lunch we had planned but they’ve always been patient and supportive.
Close friends responded the same and have always been supportive and caring even though they didn’t really know what I was going through.
There have been those along the way who say that Lyme disease really isn’t that bad because after all so and so’s child had it and went on antibiotics and they’ve been just fine.
There are also those that continue to tell us that we focus too much on Lyme disease and it’s really not a big deal. They tell us that they’ve been bitten numerous times through the years and have never had problems.
Sometimes I hear that a spouse or parent is the naysayer or gets angry because their loved one “acts” sick all the time. Most of us have already experienced this with a physician or two and I’m sure many of us have heard, “well at least it’s not cancer!”.
There will always be “those” people in our lives who are not compassionate or supportive. There will always be those who don’t believe that our illness is real.
I’m hopeful that the more information we get out about Lyme & tick-borne diseases, about what it’s really like to live with it; how it affects a person, their job, their relationships, their life, that just maybe people will be more understanding and caring to their loved ones and maybe our doctors will believe us.
Sometimes loving others comes in the form of being there, asking questions, listening and helping out even when you don’t understand. We should all learn to love one another and appreciate those who love us.
When I was diagnosed 6 years ago I knew nothing about Lyme Disease except that it was something you might get from a tick. Before Lyme I had never bothered to learn about it because quite honestly it didn’t affect me.
I suddenly found myself at the mercy of my doctor. I willingly followed her prescribed treatment because I was way too sick to understand what I was dealing with or how to help myself. I had always been against taking antibiotics unless I absolutely had to but here I found myself with 3 different types of antibiotics all at high doses all at the same time.
If you’re taking antibiotics it’s very important to supplement with a good quality multi-strain probiotic, preferably one that is refrigerated, as well as a good yeast such as Florastor. Florastor will help prevent a Candida overgrowth. If you are not taking these to restore your intestinal flora you’ll find yourself with chronic diarrhea and pain. Without these you put yourself at risk for C-diff which is a very serious bacterial infection in the intestines.
I’m always shocked to find that many doctors don’t tell their patients to take probiotics. They’ll need to be taken at least 2 hours on either side of the antibiotics or they could interfere with them.
When I first began taking antibiotics I was filled with so much anxiety. Anxiety about the Lyme itself, about the pain I was having and most of all whether I was going to have a horrible reaction to the medication and die. I hated medicine that much and it scared me.
Some of my fears came to life as I experienced what’s called a Herxheimer reaction. This is when your body is overloaded with toxins from the die-off of bacterial, fungal or parasitic infections. I’m not sure if I can put into words what I experienced during my first herx. I felt like I had the flu, I was weak, I was lightheaded, dizzy, disoriented and my entire body was overcome with intense pain, worse than I was already having.
I had no idea this was going to happen which caused my fear to grow. As time went by I learned ways to manage my herxes and as the bacterial load was reduced over time my herxes minimized in intensity.
During my 4 years of antibiotic therapy, my doctor rotated antibiotics in order to treat the Lyme and various co-infections. When she found a combination that helped more then the others I was hesitant to switch and for at least a year she allowed me to stay on that protocol until my body decided it was time to change.
Eventually we discovered that I also had Babesia which requires anti-malarial drugs because Babesia is a parasitc infection much like malaria but more difficult to treat. I felt my absolute best on the antimalarials but after almost 2 years my liver decided it had had enough.
While I was on antibiotics & antimalarials I learned about herbal protocols for tick-borne diseases from an herbalist who was treating my oldest daughter and I read Harold Buhner’s Book Healing Lyme. This is a fascinating book, not just about Lyme but about herbal medicines and the many wonderful ways they help to support the body and kill infections.
I added some herbal products to my protocol which helped to support my body during this time as well as to help treat the infections. Some of the herbs we used are Cat’s Claw, Resveratrol, Teasel, CSA, Cryptolepis. You can find a complete list on Buhner’s Healing Lyme website.
Babesia, is very difficult to treat and relapse rates are very high. I found that using herbs in combination with an anti-malarial helped me to feel my best but this treatment is very hard on the liver.
About a year ago I took one of my daughters to a new doctor who uses homeopathy. Her symptoms were very severe and despite trying different combinations of antibiotics and antimalarials for over 3 years, she became worse.
Homeopathy was new to me and a year later I’m still learning how it works. While the medications and herbs made my daughter worse she has responded incredibly well to homeopathy.
I’m overwhelmed by how this doctor has been able to help my daughter and because of his success with her our whole family made the transition to homeopathy.
Each of us are responding very differently to the treatment. While my youngest daughter and husband are doing remarkably well using homeopathy, my other two daughters and I are having a much harder time regaining our health. I’m sure it’s just a matter of uncovering all of the many pathogens we are fighting off as well as environmental and preexisting conditions.
It seems as if each week new pathogens are found in ticks and in other biting insects. While testing for known pathogens is very poor there aren’t any tests for the new things scientists are discovering making it almost impossible to know every infection you may have gotten.
Keeping this in mind, I’m being patient and confident that eventually we’ll figure it all out and that we will feel great again. Living with chronic fatigue and pain has taught me to be patient and trust for God’s perfect will to be done whether that’s complete healing or not.
Years ago when each family member was being diagnosed with chronic tick-borne infections, we made a decision that we would trust and seek God for everything.
We had read time and again how people become so desperate for healing that they spend their entire life savings and go into deep debt traveling all over the country and sometimes the world trying to find “the cure”. Many people try every treatment available and follow every new cure they hear about.
I completely understand this desperation and willingness to do whatever one can do to help themselves, their spouse or child feel better.
Lyme disease is not covered by medical insurance which means that every treatment choice we make would be paid for out of our own pockets. We knew we had to seek God’s will for each decision in our journey and our choices of doctors, tests, and treatment.
Each of our Lyme & tick-borne infections present differently, each of us responds differently to the medications and even to natural therapies. When we find that something works well for one of us it hasn’t necessarily meant that it works for all of us.
For now, I’m thankful for a more natural and gentle approach to our healing, especially for my kids. There are so many choices for treating Lyme and when it comes to a chronic infections, each person must find what works well for them.