My Battle with Lyme Disease

(I am not a doctor. I am not trying to diagnose or treat any illness. I am not making any recommendations, but simply relating some of my experiences as I battled my own health issues.)

Looking back, it’s hard to say how it all began. All I can do is share with you some of the things I went through after I realized I wasn’t well, and some of the events that took place as I fought my way back to better health. I originally didn’t recognize how sick I was until one day I was sitting at the kitchen table and couldn’t get up. My limbs simply wouldn’t co-operate. I was under a lot of stress both at home and work. At first I thought that was the problem, but when I couldn’t stand up from the dinner table, I knew it was something different. From that point on everything is rather a blur because of how sick I was.

The first sign of trouble

I was in my early thirties and really didn’t understand what was happening when the real problems began. At one point I remember noticing a round ring on my left hand. I lived in a rural area, and went to see the doctor in town who told me it was ring worm.  I had several outdoor cats at the time and felt this made sense. She told me to put cream on it and it would go away in a week or two, but after two weeks it was still there. It itched and didn’t seem like it was getting any better. When I went back and told her that it wasn’t getting better she gave me the same diagnosis and told me to keep using the cream. After two more weeks (nearly a month now) it eventually faded. Looking back, I wonder if it was ring worm or actually the signs of a tick bite and Lyme disease.

 

Before this, I remember having night sweats and pain in my abdomen. The pain kept getting worse until it began keeping me up at night and preventing me from holding my three-year-old son in my lap.

At the time I figured it was my diet and exercise so I tried changing different things but to no avail. When I tried to push myself and exercise I found I just couldn’t recuperate quickly like most people my age.

Hindsight is 20/20

In hindsight, I can see that the symptoms for Lyme disease were there, but I didn’t understand them. A lot of it is foggy to me now. I didn’t realize how sick I was until later. I remember being in bed for two weeks with nausea and diarrhea and I kept getting weaker and weaker until I wound up in the hospital. They told me my potassium was extremely low and were surprised I was able to walk into the ER on my own. After admitting me, they hooked me up to an I.V. and ran all kinds of tests. I was in the hospital for about a week and my wife told me I looked extremely pale and was worried I may die.

The trouble with diagnosis

I remember a relative telling me at the time that she thought it was Crohn’s disease and it would be okay and all I may need was to have a portion of my stomach removed or some such. Thankfully, that never happened. The three doctors examining me all told me my tests were inconclusive.  All they had to go on was low potassium and high liver enzymes. Eventually, they told me I had a virus and sent me home without any answers. A virus – that was their diagnosis. They suggested I go see a kidney specialist, which I did. I remember him looking into my eyes and informing me that they didn’t look right but he wasn’t sure what was wrong. He ran some tests and I felt confident I would finally find out what was wrong with me. A few days later we talked about the results. His answer to my problem was to eat more bananas since my potassium was so low. Not convinced, and after the scare about the Crohn’s disease, I went to see a specialist who ran more tests and was told he wasn’t certain but thought I did have Crohn’s which was the source of my trouble.

Searching for Answers

Based on this, I continued to look for healthy ways to change my diet. I came across a couple who used the “Specific Carbohydrate Diet” and after meeting and talking to them I decided to try the same. This helped, and I was able to function minimally. I never had much energy and found it a struggle to keep up with life.

One day I happened upon a local health store and found the same book I was using for my diet. I spoke to the person behind the counter and was told they knew a Naturopath that could help so I made an appointment. Returning a few weeks later, after speaking with him and running a few general tests, he informed me he thought I had Lyme disease. I wasn’t convinced so he asked if I had some specific symptoms to which I replied no. He recommended taking medication to fight the Lyme disease. Even though I wasn’t fully convinced, I still felt he had given me more to go on than any of the doctors had previously, so I agreed.

Discovering more symptoms

I kept feeling poorly at work and home, but I persevered as best I could. At the office while working at my computer, I noticed the monitor was blurry so I called my co-worker and supervisor over to tell them I needed a new monitor, but they both informed me it was fine. After a few days, the blurriness subsided, but then seemed to come and go. This was one of the first signs that my Lyme was getting worse. Weeks later I developed more symptoms, including several the Naturopath had mentioned. Finally, I had something to go on. Armed with this new information, I went to see several doctors, who ran standard Lyme disease tests which came back negative. All the while I was developing more and more symptoms and feeling much worse. The pain was especially intense including stomach, head, sinus, ear, neck, joint and nerve pain. I was becoming more forgetful and lethargic. When I went to the doctor about these symptoms I was told I was depressed!

I continued getting sicker, but none of the doctors or specialists could help me. One doctor told me I had fibromyalgia and restless leg syndrome and that there wasn’t much they could do for it. I knew there was a lot more than that happening because I was getting worse symptoms including foggy thinking, forgetfulness, anxiety, periodic heart palpitations, along with the perpetual pain. I had an EKG done because of the heart palpations and the doctor said it was erratic, the electric impulses were sluggish or something. I can’t recall precisely now. More testing was done and I was told it was nothing to worry about. Still I had no answers.

Disease progresses

Finally, one morning I couldn’t get up and go to work; my limbs just wouldn’t cooperate. I called my boss and told him I was just too sick to come in and I couldn’t physically get out of bed. I wasn’t strong enough and didn’t have enough energy. Getting up took everything I had, and when I finally did, I shook and trembled uncontrollably. I also kept falling and required the use of a walker to get around.

My family began realizing that I wasn’t malingering and decided to take me to a larger hospital. Despite all their care, they couldn’t provide a conclusive diagnosis. Fluid was taken from my spinal column, and the test results showed high numbers, but not high enough for a diagnosis. That was when I accepted I had Lyme disease and needed to do something about it.

I just laid in bed for another couple of weeks and was almost paralyzed and couldn’t get up by myself. A simple thing like turning on the light was too difficult for me. My speech was starting to slur and my memory was getting much worse. The whites of my eyes were continually red from inflammation. The entire time the pain was always present. Even when I was able to get up, I continued to tremble and shake but some days were better than others.

Back to the Naturopath

The Naturopath was the only one of the twelve or thirteen doctors I’d seen who was able to give me any type of diagnosis or helpful suggestions. I decided to return to him. When I returned he wasn’t surprised about the standard Lyme test coming back negative because roughly, those tests check for the antibody – the body’s reaction to it. If I had Lyme long enough, my body would quit creating antibodies and the test would come back negative. He suggested a different test that was the gold standard test for detecting Lyme.

My family and I had been through so much up to this point and were desperate for answers. We eventually decided, not easily for sure, to follow his suggestion and leave the U.S. and go to a clinic in Mexico.

Finally, a diagnosis

Once there, they did an IgeneX Lyme disease test and discovered I had more than one strain, some from a long time ago, and some more recent. They also determined that my adrenal glands were overworked from pushing too hard, along with many other diagnoses. Some of the diagnosis’s I was told they had never seen so poor. I needed treatment, so we stayed for several weeks. Perhaps it was several months. I’m not certain because it is all a blur to me now. During the treatment I was told that I was much sicker than they initially realized so I needed to stay longer. I spent months there trying to recover. It was a battle. At one point I remember thinking I was going to die and recall a nurse praying over me so that I would survive.

Barely managing my symptoms

I received treatment during the day and would rest at my temporary “home” at night. Resting consisted of lying on the floor on a mat and trembling most of the time. It was a fight to function but I got up and walked as much as I possibly could. It was me or the illness and I wasn’t going to let it win. Gradually, ever so slowly, I began to gain ground.

Over time I improved enough to leave and move back home. My care consisted of both antibiotics and natural medications. I maintained this for five to seven years, and tried to go back to work twice. However, both attempts ended in a relapse of the symptoms. I then realized this was going to be a lifelong struggle.

After being unable to continue at my last job, and my health steadily declining, I focused on my diet and medications while taking my children to and from school, and doing what I could around the house. Even that was a struggle with my chronic symptoms as I battled this disease. I read different material on Lyme disease. I now understand that Lyme spirochete can lie dormant in cyst form until months or years later. I focused on eradicating it by trying different things, but the symptoms grew worse over the next few years.

Time for a change

I eventually stopped my antibiotics due to the side effects I was having with long term use and took natural remedies instead hoping for some relief. My body and psych had taken a beating over the years. I literally felt like I was dying a slow, painful death. Nothing was working so after attempting several natural treatments, I finally contacted my parents. They had supported me through this whole ordeal with calls and visits, but I had reached the point where I could no longer handle the daily activities of family life and needed my parents help. I truly believe that going to Canada where my parents reside and finding the Good4you Clinic helped put me on the path to better health.

Finding a better way

My cousin in London, Ontario is a chiropractor and chiropractic sessions were a must for me then as it helped alleviate my pain. After a session we spoke with him and his secretary who mentioned Dani and the Good4you Clinic. He knew her father who had been able to help many different people and thought maybe she could help. Looking back, I realize what a blessing it was to find her. I believe God’s mercy was working in my life by directing my path to the professionals who could provide the care and guidance I needed for me and my family.

We made an appointment and conversed for over two hours. She was very patient and understanding, and also confident that she could help me. After testing she discovered some of my vital organs were very sluggish. What was interesting was that the information gleamed from her tests matched exactly with the symptoms and problems I had been experiencing right down to the food allergies. One of the best things she was able to do was determine a proper regimen I could handle without overtaxing my body.

What is “Herxing”

The Jarisch-Herxheimer reaction was originally noted in 1895 by Adolf Jarisch and later in 1902 by Karl Herxheimer. When fighting Lyme disease, a “Herxheimer Reaction” or “Herx” occurs when dead or dying bacteria (Lyme) release large amounts of toxins into the blood and tissues at a distressing rate. This provokes a sudden and exaggerated inflammatory response. The released toxins exacerbate the symptoms being treated or create symptoms of their own. Essentially, the body is attempting to eliminate the released toxins much faster than it is able to.  The important thing to note is that worsening symptoms do not indicate failure of the treatment; in fact, usually just the opposite.  These episodes can be very painful and completely debilitating.  Killing the Lyme bacteria causes a large amount of swelling and inflammation. In my case, the Herx was so severe that I couldn’t function for days and even weeks at a time. At least once I was treated at the hospital for Pericarditis, which is inflammation and swelling of the sac surrounding the heart. On bad days, many of my neurological problems stemmed from inflammation of the brain, etc. I found relief through exercise, hot baths and infrared therapy, (sweating the toxins out). Ice packs also helped deal with the pain and inflammation of a Herx as I’ve attempted to alleviate the Lyme without completely incapacitating myself.

Finally turning things around

Thankfully, Good4you’s treatment balanced what I needed with the exact amount that my body could handle. The first treatment I doubled in an attempt to test it quickly in order to determine my progress. After a rough few weeks, I realized I felt much better. The feeling of dying had disappeared and I felt as if I had turned things around. I felt confident I finally found someone who could help me in making strides to better health.

When I returned for retesting, I showed a noticeable improvement. Not only was I feeling somewhat better, my numbers were also much better for the areas focused on. I still needed further treatment so I took my next regimen home with me. Over the next six months, I steadily improved. The Herxing caused by her treatments were manageable and I started to have more energy and drive.

Help with a dose of hope

I am now on my forth regime, and the improvement is continuing. In retrospect, I am amazed at where I am now compared with years ago. At one time I thought I’d never walk again, but I am now walking sometimes up to five miles a day. It’s still a struggle, since the battle is ongoing, but some days are better than others. Overall I am significantly improved. I’ve begun to exercise regularly for the first time in years. Now, I have hope that there is a light at the end of the tunnel. It has been ten years since I was originally and officially diagnosed. Ten years of my life have been lost fighting this disease, but I now feel that I can begin living again. I’ve begun volunteering at a local hospital and I am spending more time with my children. Patience and perseverance on this path I hope will eventually return me to good and complete health. I wouldn’t be doing as well as I am if it weren’t for Dani, the Good4you clinic and my trust and reliance upon God.

Sincerely,

J

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