Not too long after I celebrated my 50th birthday, I found myself facing a very unexpected, life-saving surgery to repair a ruptured colon, remove a large abscess, and a huge raging infection. What I thought was an episode of constipation turned into an event that almost took my life.
Lyme Disease, Antibiotics, and My Miserable Gut
When I was diagnosed with Lyme disease in 2009 I was terrified. I didn’t know anything about Lyme disease or how it should be treated. Information was limited and I wasn’t aware of any treatment options other than antibiotics. So, based on what I had read and the enormous fear I had, I accepted [Read more…]
Taking the Scenic Route on Your Chronic Illness Journey
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.
Getting Real About My Neurological Lyme
My sister recently told me that I need to get real on my blog. She said that if I’m struggling with my health I should share it, be open about it and let my readers know what’s going on.
Fear, Anxiety, and Our Journey with Neurological Lyme
One of the more embarrassing symptoms of Neurological Lyme is the sudden onset of anxiety and fear. Sometimes, severe panic attacks can rise out of nowhere in an otherwise self-controlled person. [Read more…]
Good News / Bad News Lyme Check-Up
Here we are approaching the end of our first year of treatment for Lyme Disease and Coinfections with our newest doctor.
It was quite an interesting experience at first and the doctor’s methods were very different than anything we had ever experienced in the past.
I had heard of muscle testing before but never auricular energy testing. Honestly, I doubted much of what this doctor was doing until we began seeing major improvements.
Before that, the only thing I had to go on was the highest recommendation from several people at church whose teen and college age children were treated successfully for tick-borne diseases.
Before switching to Dr. S., five out of six of us had been treated with an aggressive antibiotic protocol for years. We had also been given anti-fungals, anti-malarials and were told to take probiotics, Saccharomyces, and a box-load of other supplements. We were constantly detoxing, gluten free, sugar free and fun free. Not really fun free, but for the kids being on such a strict diet was a bit of a downer.
We were really very sick with Lyme, Coinfections and then Candida from all the antibiotics. Life was hard and it was even harder to stay positive and encouraged when we weren’t getting better and our doctor had no idea what else to do.
I was desperate to get better and to get my children better, they had lost so much of their childhood. This led us in a new direction and off antibiotics.
Now, instead of antibiotics we’re spraying anywhere from 15-27 homeopathic/nutritional supplements in our mouths three times a day.
Sometimes when we’re sitting at the table getting ready to take our sprays, we make eye contact and the race begins to see who can finish theirs first. I mean, after 8 years of this madness you kind of have to make the best of it.
Last week, the girls and I had our check-ups, we go about every eight weeks. My oldest is showing that most of her infections are almost gone. She still has some infections showing but it seems her bigger issue has to do with her blood sugar.
At the recommendation of a good friend we decided to start her on a new product in addition to what she’s doing. This product addresses her blood sugar, heals her gut and gives her the energy she so desperately needs.
So far we’re seeing positive results and she’s been up out of bed since starting, but it’s only been a week. If she continues to do well, I’ll be certain to tell you all about it.
My sunshine girl is doing much better. She still gets fatigued but not as often and it’s usually when her schedule is really full, she’s going to bed late or she’s not eating well. She is doing much better than she was so the doctor reduced her remedies and doesn’t need to see her for at least 4 months.
My baby girl, who isn’t a baby by the way and already taller than me, had some return of symptoms. We were sure it was because she was feeling so good she wasn’t taking her remedies when she was supposed to. Imagine my surprise to hear the doc say she has Lyme again, as in she got Lyme again.
I’m actually not really that surprised since we’ve been doing a lot more outside activities. She’s been outdoors a lot with friends and with the youth group at church. It seems they’re always doing things in the woods, fields or down at the creek.
Of course I demand the kids look for ticks but honestly, nymph ticks are almost impossible to see.
My little man is doing great. He had a Zyto scan done and was first treated for Mycoplasma and then Borrellia (Lyme). He hasn’t complained of any pain.
My checkup went well but there are still some issues to deal with. I had to go on an antibiotic in May for an infection I got in my finger after I had nerve testing, so once again I’m dealing with Candida.
I haven’t been feeling well, joint pain, leg & feet pain, tics, and some memory problems. Most of these symptoms could be from the Candida. My leg pain was so bad that I wasn’t sleeping well at night. After a few days on my adjusted protocol I began to feel so much better.
So that’s our update. I’m really thankful we’re being treated in a way that isn’t damaging our immune system like antibiotics were.
We’re working on strengthening our immunity and our bodies so that it can do the work needed to get rid of these infections.
My oldest is not as strong and still has to regain her health in order to get back into life, but it looks like we’re finally on the right path.
The rest of us have seen positive improvements and are really thankful that while we know we are not as healthy as we want to be, we are able to be busy doing things we love.
Antibiotics for Lyme and What We’re Doing Now
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.
For more information about what we’re doing now visit the Alternative Medicine Center
God In The Lyme Maze
Living in the Lyme Maze can be frightening, confusing and overwhelming. My family and I have spent since 2009 trying to find a cure for Lyme.
Our whole family has Lyme Disease, Bartonella, Babesia and maybe a host of other co-infections that were never diagnosed. We all had many similar symptoms with the exception of one of my children who had severe psychiatric symptoms.
Many Lymies get to the point where they are not progressing in treatment and their doctors aren’t sure what else to do.
The burden becomes almost too much to bear when your doctors throw up their hands and say, “I can’t help you”.
Some may ask why God allowed your whole family to get sick in the first place? Or why didn’t God bring the answers sooner? Why hasn’t He just healed you?
He very well could have if He wanted to but He hasn’t and I rest in that. I know that His ways are not my ways. I know that He loves us even if He chooses to never bring about complete healing.
If I had a choice, of course, I would rather never suffer or allow my children to suffer, but the longer I’m a Mom the more I realize that we learn best when we have to put forth the effort and work through the struggle.
Without this trial, I would not have spent the number of hours that I have seeking out a treatment protocol that will work for my family. I wouldn’t have researched like I did, I wouldn’t be able to sympathize with others and I certainly would have no need to pray about it.
I see the wisdom now in the journey, in the struggle, and in the suffering.
At that moment when no one else knew the answers and everyone had thrown up their hands saying, “I don’t know what else to do, you’re on your own”, I ran to the one who fearfully and wonderfully made us. I ran to the one who wasn’t sleeping when we all got sick with Lyme disease and who isn’t sleeping now.
God’s most recent answer was way out of my comfort zone. It was something new, something that I didn’t understand and had never studied. It was something that I had heard of but didn’t believe in. Something that I needed to completely trust the Lord with because He so clearly led us to it.
We were recommended a doctor who was getting people better. He was helping Lyme patients but also many others with a variety of illnesses. He tests through auricular testing and uses his own line of homeopathic remedies to treat many different symptoms and illnesses.
We noticed a dramatic difference with our daughter after only 9 weeks. It was a miracle to us because everything we had tried for her didn’t work and most of it made her symptoms unbearably worse.
We were desperate for answers and help for her because she was the most severely affected by tick-borne diseases in our home. If we didn’t find help we weren’t sure what we would do.
Treating Lyme can be like running through a maze. There are so many different components to the disease itself. There are different treatment protocols some using medications like antibiotics or anti-malarials, some using herbal antibiotics and some homeopathic or other alternative treatment. There are specialty labs, specialty clinics and specialized medications.
Everything about treating Lyme disease is outrageously expensive and not covered by insurance. It’s like the doctors know that we are desperate to get better and because of that desperation we’ll pay anything and try anything regardless of whether anyone is getting better.
This prevents many people from even wanting to enter into the maze. It’s too confusing, doctors don’t believe in chronic Lyme, the tests are inaccurate and if you did know that you had it, then what?
My husband and I decided long ago that we weren’t going to run from doctor to doctor, paying out of pocket as we go, trying to find the latest and greatest cure. We decided to wait, to pray and to trust God for direction and provision.
We weren’t as sick or desperate as so many Lyme patients can be. We didn’t require hospitalization except for minor emergency room visits, we didn’t get treated with IV antibiotics even though we should have initially. We were not paralyzed or dying and so we could wait on the Lord.
Even so, it hasn’t been easy watching my children in pain or missing out on huge parts of their childhood. I can thank God that my husband has rarely missed a day of work. It’s heartbreaking to hear stories of lost jobs and homes due to this illness.
The world of Lyme disease and its treatments are a maze, especially the longer you have it. Wading through the testing, treatment options, side effects, and the symptoms can be confusing and overwhelming.
This past year I found that I haven’t really thought too much about Lyme or what treatment we should seek out next. I haven’t had to spend hours upon hours reading to figure out what it is we’re missing.
Our new doctor has shown us results and I am confident that he will be able to help us all overcome this frustrating disease. Even if he doesn’t get us 100% better, I’m thankful for being off harsh medications for now and being able to live a life that is not paralyzed by a disease that’s so complicated.
If you find yourself entering into the Lyme Maze don’t run it alone. Look for help from those who understand it and aren’t out just to take your money.
Most importantly seek wisdom from above. God is faithful to answer but remember, sometimes you will need to wait patiently upon the Lord.
Diagnosis – Chronic Lyme Disease
Lyme disease is an infection caused by a bacteria called Borrelia Burgdorferi. It is a stealth-like infection that can go undetected for years. Lyme is often undiagnosed or misdiagnosed because testing is poor and its symptoms mimic so many other diseases. Most people who get Lyme never see a tick. They never get the classic bulls-eye rash which only 25% of infections produce. I never saw a tick and didn’t have initial symptoms. Imagine my surprise when I got a diagnosis of Lyme disease. [Read more…]
How Lyme Changed Everything
An Entire Family with Lyme?
I’m a Lyme Mom. I have Lyme disease and all 4 of my children have it. As a matter of fact, so does my husband.
Many times I’ll get the question, “how can your whole family have Lyme?” to which I usually chuckle and say, “well, a family that plays together gets sick together!”. On the inside, I find myself grumbling and asking, yeah, how can my whole family have this? It’s very frustrating explaining our situation to others and very difficult to reconcile in my own heart why this has happened to us!
“Health is not valued until sickness comes.” Thomas Fuller
I’m not sure exactly when I contracted Lyme disease. I suspect I was bitten by a tick when I was pregnant with my son in the fall of 2006. But it’s hard to say because sometimes I wonder if I’ve had it since I was a child and then reinfected. My health also suffered a great deal after the birth of my youngest daughter in 2000.
My Declining Health
Not too long after she was born I was diagnosed with plantar fasciitis. I walked 3 miles a day while I was pregnant and the podiatrist told me that walking so much with the extra weight of the baby was the reason I was having intense pain and could barely walk on my poor feet. I went to physical therapy, bought custom-made orthotics, got a few steroid shots and I was on my way.
Shortly after this, I began having heart palpitations which felt as though they would make my heart leap out of my chest. I went to the doctor and I had an irregular EEG so I was sent to a cardiologist for a nuclear stress test. I was so frightened, at the time I had 3 young daughters and heart disease runs in my family. I had struggled with high cholesterol since I was 18, despite diet and exercise, so of course, this consumed my thoughts.
Diagnosis Fine
In the end, all tests were clear and the doctor told me everything was fine, except I wasn’t fine. Off and on I would have horrible heart palpitations along with fatigue. I was sure I was going to have a heart attack, especially when I would lie down at night to go to sleep. My primary doctor told me that my heart palpitations were most likely caused by anxiety and maybe too much caffeine, so I did what I could to adjust my lifestyle and I stopped drinking coffee.
In 2003 I came down with the flu. That year was one of those “epidemic” years where the flu got an early start. My 3 girls and I all got very sick one right the other. Thankfully, the girls recovered just fine but I, however, didn’t recover for another 2 or 3 years.
I continued to have upper respiratory problems, shortness of breath, coughing up phlegm, dizziness, shallow breathing and coughing so much I thought I felt like I was going to pass out! I often felt like I couldn’t breathe out and that my breathing would get stuck. Naturally, I went to the doctor who sent me to an asthma specialist and she said I had asthma. The problem with that diagnosis was that the medications and rescue inhaler made me worse.
Allergic to Everything
I began having allergic reactions and breathing episodes whenever I was around chemical smells, for example; cleaners, shampoos, perfume, body lotions and especially the smell of cigarette smoke. I was so afraid to leave my own house and as if that wasn’t scary enough I began having reactions to food. I felt as if I had become allergic to everything.
I began to notice that every time we went out to eat I would begin to get sick and felt as though I was going into anaphylactic shock. My blood pressure dropped, my throat felt funny, swollen and like I couldn’t swallow, I became very dizzy and got very sick to my stomach. The only thing that seemed to help was taking 2 Benadryl and going to bed. I would lie there and just keep saying to myself, “relax, breathe, you’re going to be ok!” Hindsight – I should have gone to the ER.
I went back to the doctor and she said I was allergic to sulfites. I did some research and couldn’t believe how many food items had sulfites in them. I also couldn’t believe that just eating a salad at a restaurant would expose me to the very thing that would set me off. I felt so helpless, I felt bad for my friends and family when they wanted to go out but I was too afraid.
I went on a very strict diet avoiding preservatives of all types, I avoided smells, perfumes, and dyes in all of my products and I began to have some relief. This didn’t alleviate my symptoms when I went to church, the store, or even the doctor’s office. I became very aware of how the smell of someone’s hairspray or shampoo could be dangerous to someone like me.
Miscarriages & Increased Pain
In 2004-2005 I had two miscarriages and by the end of 2006, I became pregnant again later giving birth to my 4th child. In the beginning of my third trimester though I began having extreme fatigue, terrible joint pain, and lower back pain. I had chronic sinus infections, pink eye, and those heart palpitations came back but nothing would ever show up when I went to the doctor.
By the time I had my son my right shoulder was hurting so badly I could barely lift him or hold him on that side. When I would rise from a sitting position to standing I would get stuck because of terrible pain in my lower back and my sciatic nerve would send the most horrific pain down my backside and into my leg. I was stiff, fatigued and I felt like I had aged to around 90 years old.
My pain always increased at night making it impossible to get comfortable or sleep. Simple things like making a meal caused intense pain and burning up and down my back. Ibuprofen and other OTCs did nothing to help.
I was extremely fatigued, it was like nothing I had ever experienced, not even pregnancy. I would fall asleep during the day, even while reading out loud to my kids or if I would lie down for just a minute my kids would come and shake me awake and I would learn that several hours had passed. At night I would sleep so deeply that I wouldn’t hear my newborn son cry. I knew something was very wrong because I knew that mothers hear their babies even when they’re exhausted.
When my son was 9 months old I began having severe pain in my ankles and the muscles in my calves were so tight nothing could relax them. I went through physical therapy for Achilles tendonitis but it wasn’t helping. It became so bad that walking was just too painful. I couldn’t get up in the middle of the night to get my son because my legs and feet were so still and painful, I felt like they just wouldn’t work and my body was too stiff.
Counting Steps
In the morning, I would have to sit on the end of the bed and do stretching exercises for 5 or 10 minutes just so I could hobble out of bed and walk like a 90-year old down the stairs.
I remember counting how many steps it would take to go from the kitchen to the living room or from the parking lot into the store. Counting steps in order to accomplish tasks with the minimum amount of pain possible.
I was also having all sorts of problems with my stomach; acid reflux, throwing up for no reason, pain when I drank water. I had night-time chills to where I would shake uncontrollably. I felt like I was freezing cold no matter how much I bundled up.
As time passed I began noticing that I was having memory issues, in fact, I couldn’t recall memories from my childhood which really scared me. I had difficulty thinking, reading, comprehending and problem-solving. I couldn’t do simple math in my head, simple tasks became impossible because I didn’t know how to go about them, and I began to have constant, unrelenting pain from my neck down to my feet. Burning, stinging, nerve pain along with muscle and joint pain. It was the worst pain I had ever experienced.
As my pain increased and my symptoms kept growing, I began having anxiety, depression and anger outbursts, sometimes feeling so much rage inside. I was terrified, I didn’t know what was happening to me. I remember asking my husband if I hit my head because my brain wasn’t working and I was convinced I was suffering from early onset Alzheimer’s.
By this time my son was almost 2 so in two years time these symptoms grew out of control. I had been to my doctor, I had lab work done, and I had x-rays. I went to the podiatrist, 2 different physical therapists, a pulmonologist, counseling and my chiropractor.
Crossroads
My husband and I were scared. We knew something was very wrong and at that point when the fear really set in I remember my husband praying for me and asking God to please show us what the cause of all of my health problems was.
At the recommendation of a friend, I decided to visit a new chiropractor. My pain was so severe that I was sure my regular chiropractor had broken my hip. The new chiropractor I went to treated me for 4 weeks and I only grew worse with each treatment. He finally suggested that I get a Lyme test. Although I was very sick, I thought he was nuts. I told him that I had never pulled a tick off of me and I certainly had never had a bulls-eye rash. What was Lyme disease anyway? Didn’t that just cause arthritis? He assured me that Lyme was much more and that I might just be surprised.
I reluctantly asked my primary doctor for a Lyme test while also getting muscle relaxers and x-rays to see if my shoulder, back, and hip were all broken.
Diagnosis Lyme Disease
Quite honestly, I was really surprised when that test came back positive. As I look back now, I see how truly blessed I was that I was able to get a diagnosis. Many people go for 10 or 20 years without ever knowing.
Lyme tests are not very accurate so it’s very difficult to get a positive test.
Lyme symptoms can happen right away and if they do count your blessings because typically there are no warning signs. The tale-tell bulls-eye rash only occurs in about 25% of early Lyme infections. Like many who get Lyme, no one in my family had the classic bulls-eye rash and none of us got the initial fever or flu-like symptoms, our symptoms began slowly over time.
This only begins my story and believe it or not, this is just a portion of my medical history. I hope that you’ll understand more about Lyme disease as you continue to read my story and that you’ll see how you too can abound in the hope that God can give while living with a chronic illness.
Read part two of my story Diagnosis Chronic Lyme Disease