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A Journey Through Chronic Illness
It was the summer of 1998 when I first began to feel that something was going on with my health. My husband and I had spent the better part of the previous year living in a campervan and experiencing a nomadic lifestyle with most of our days in national parks, beaches, and nature reserves. It was a beautiful time, filled with love, peace, and tranquility. Little did we know a storm was soon to enter into our lives that would change things completely.
Now it seems most probable that this was the origination of the development of Lyme disease. During this time I don’t specifically remember being bitten by a tick but it is certainly very likely. However, in reality, only 30 percent of Lyme disease sufferers will actually recall a tick bite. We were most certainly in contact with a lot of other biting insects including mosquitoes and sand-flies. In the mornings we did our daily exercises outside in grassy areas and most evenings we would sit by the campfire waiting while potatoes and vegetables slowly baked in the smoldering embers.
Several weeks later, when we settled down in an apartment, a combination of unusual symptoms gradually began. It started with a general feeling of fatigue and fuzzy-headedness, which later I would recognize as “brain fog”. I also was having trouble sleeping and would frequently awaken in the night with difficulty getting back into a deep sleep. Previously I was a wonderful sleeper and even could drink a cup of coffee at 10 pm and go right to bed!
On a routine visit to a naturopath, I brought up the symptoms I had been experiencing and asked her if she knew if there was something going around. Her response was that there always is but since my symptoms at that time were apparently mild and I was young and relatively healthy we both concluded that it was just a passing virus and nothing to be concerned about.
It was around this time that I noticed a circular rash on my left arm. I assumed this was a ringworm infection, which was something I had experienced as a child. Gradually it went away after several weeks so I gave it no further thought. However, I do distinctly recall thinking that this rash was different than the ringworm I remembered from my childhood. It wasn’t itchy or scaly, it had a red circle in the center and the ring slowly expanded in size over time.
It was only last year when I seriously began to consider Lyme disease as a possible cause of my chronic illness that I clearly recalled this experience. Looking at my health history and consequent symptoms this skin condition was most likely the classic bull’s eye rash that is one of the earliest and obvious signs of Lyme disease. I also didn’t have any of the risk factors for ringworm such as being in close contact with animals or using public bathing facilities. But at this stage, I don’t think I even knew what Lyme disease was so it didn’t come into the picture.
As you can see in the image below there is much similarity between the rashes of ringworm and Lyme disease. The one I had on my arm looked very similar to the pictures on the left.
Over the next six months, I observed a very gradual and insidious decline in my general health. Insomnia and brain fog persisted and my energy levels progressively worsened. I would feel exhausted on a really deep level after going for a ride on my bike or doing my morning fitness routine. But still, I felt this was something that would pass eventually and in general I didn’t regard myself as having an illness. I just wasn’t feeling at my best.
Things were to dramatically change after experiencing a particularly stressful and traumatic event in April of 1999. The very next day I came down with an acute flu-like illness involving sore throat, severe headaches, and muscle pain. Again I expected this was just a regular flu and was something that would resolve on its own. But several weeks later the symptoms showed absolutely no signs of improvement. I waited and waited, expecting relief from this intense suffering but it never came. This was obviously some kind of pathogenic illness that my immune system was unable to deal with effectively.
I was essentially bedridden for over a year and unable to function at any degree of normalcy until many years later. The first several years the insomnia was so extreme that I would only sleep for two hours a night – and this was usually broken up into small segments of no more than twenty minutes at a time.
Now the brain fog reached a much more serious level and severely impacted my quality of life. A weekly trip to the grocery store would leave me so physically depleted that it would take three days to recover from the stress and exertion of that event. And then I had to repeat it again a few days later!
There were many, many other issues affecting every aspect of my being including swollen lymph nodes, chest pain, heart palpitations, cardiac arrhythmia and racing heartbeat, interstitial cystitis, severe and paralyzing abdominal pain, light and noise sensitivity, ringing in the ears, earaches, hearing loss, itchy ears, blurry vision, gastroparesis (a stomach disorder), candida, parasites, chronic sore throat, migraine headaches, ovarian cysts, muscle cramps, severe convulsive muscle twitches, and cognitive impairment.
When I did seek medical support the doctors had no insight as to the possible cause of this wide array of severe and debilitating symptoms. Blood tests showed exposure to Epstein-Barr virus but everything else was within normal limits. Lyme disease was never tested for or even considered. After eight years of suffering and seeing many different doctors and health experts I was finally given a diagnosis of Chronic Fatigue Syndrome.
Still, the only treatment that was offered was pharmaceutical medication to help with insomnia. Doctors simply had no idea what to do with these cases of mystery illness, which were just beginning to be increasing in occurrence. At worst I was labeled as a malingerer when doctors believed there was nothing wrong with me at all. The lack of care and compassion available when I was so desperate to get well and just live a normal life was so deeply upsetting and even damaging on an emotional level.
You might wonder – why did it take so long to look into Lyme disease as a possible reason for my chronic health issues?
At the time and still to this day the location I was living in was not regarded as being endemic for Lyme disease. In fact, health experts vehemently denied its existence in the area, so even though my symptoms correlated exactly with Lyme disease I thought it couldn’t possibly be the case. For almost 17 years I have suspected a retrovirus or some other kind of stealth bacteria that was able to evade the immune system but have never been able to receive any acceptable diagnosis.
Over the years I have tried so many healing modalities with varying degrees of success but this disease was still debilitating and impacting my life on a daily basis. I would say that adding more raw foods to my diet – especially fruit – has been the most beneficial factor in managing this condition, but even now I still have a long way to go before I feel completely recovered. Those who are dealing with similar health issues know just how difficult it can be to make progress and effectively apply the most appropriate treatments when your health has been impacted on such a deep and dramatic level for so many years. Living and traveling in tropical countries for the last ten years has also brought its own unique set of challenges.
Although I sleep better than I was able to in the early stages of the illness, my sleeping pattern continues to be broken and I awaken unrefreshed. Any physical exertion remains a challenge and it is usually still difficult to focus on cognitive tasks, which is all hard to fully accept as previously I was a high-performing athlete and avid student.
It was only toward the end of last year when I delved deeper into learning more about chronic Lyme disease. In studying this condition and learning about protocols from some of the practitioners that are treating Lyme I discovered more about the intricacies of these mystery illnesses and different treatment options. With a lack of access to the necessary medical testing, I decided that I was going to adopt an approach to treatment as if this was Lyme disease and just see what happens.
Is Chronic Fatigue Syndrome Actually Lyme Disease?
Under the best of circumstances, Lyme disease is difficult to diagnose and blood tests are well known for producing a high degree of false-negative results. As such many Lyme literate physicians rely on their patient’s health history and symptoms to reach a possible diagnosis of Lyme disease. Dr. Richard Horowitz is one of the leading experts on Lyme who has devised a questionnaire to determine your likelihood of having Lyme and associated disorders. If you suspect Lyme you can complete the questionnaire by clicking on the link below:
I calculated a score of 75 when I recently undertook this test and it would certainly have been much higher if I completed it when I first became unwell. A score of 46 or more suggests a high probability of Lyme disease and comes with a recommendation to see a health-care provider for further evaluation.
The CDC recently released updated statistics indicating that ten times more people are affected with Lyme than previously suspected. According to Horowitz, who has seen over 12,000 chronically ill patients, many individuals who have been diagnosed with Chronic Fatigue Syndrome and Fibromyalgia, are in fact suffering from Lyme disease and associated infections.
In another informal study conducted by the American Lyme Disease Alliance (ALDA), it was concluded that most patients diagnosed with Chronic Fatigue Syndrome (CFS) are actually suffering from Lyme disease. They asserted that 90 percent of study participants were ill as a result of Lyme. The specificity of their results is however still open for questioning as they were based primarily on response to antibiotic treatment. It is possible that the antibiotics were improving their health by targeting other microorganisms, not just the Borrelia spirochete that causes Lyme disease, even though this is very likely.
Nevertheless, there is also evidence for a link between Lyme disease and Chronic Fatigue Syndrome based on blood testing. In one study involving 1,156 healthy young men tested for Lyme antibodies, those that had a positive result exhibited significantly higher levels of chronic fatigue and malaise. The researchers concluded that antibiotic therapy targeting Lyme should be considered for CFS patients in these situations.
Dr. Sam Donta, an infectious disease specialist who is the Director of the Lyme Disease Unit at Boston Medical Center, asserts that CFS and Lyme disease are almost indistinguishable due to the similarity in symptoms. He has successfully treated many patients diagnosed with both of these illnesses, and he believes that Lyme disease is an important cause of CFS, in addition to other pathogenic microorganisms.
Dr. Horowitz says that one possible way to differentiate Lyme from other medical disorders is that symptoms can come and go in cycles with good and bad days. Musculoskeletal pain and neuropathy (such as tingling and numbness) tends to migrate around the body. Symptoms often improve or worsen with antibiotic therapy (a Herxheimer reaction when the Lyme bacteria are being killed).
Chronic Fatigue Syndrome and Lyme Disease – Hope for a Full Recovery
As I have begun to incorporate herbal medicines that are specifically being used in the treatment of Lyme disease I have most certainly experienced an exacerbation of symptoms – the classic Herxheimer reaction that only occurs when specific microorganisms – including Candida and the Lyme bacteria – are being destroyed. Also within a few weeks of beginning one of the most common herbal remedies for Lyme, after an initial exacerbation, my symptoms of brain fog and head pressure were reduced by around 80 percent. This is the first time in 17 years that I haven’t been overwhelmed by brain fog on a daily basis and it is the most dramatic response I have experienced with any therapy I’ve ever used to heal my condition.
Gradually over several months I also have noticed improvements to a greater degree than I have previously experienced with any other treatments. On average I’ve started having one or two days each week where I have felt practically symptom-free. To most people, this might not sound like much but those of you who are dealing with these chronic mystery illnesses will appreciate just how significant this really is. I have also been quite shocked to realize how much pain I’ve been dealing with and how it had just become a normal part of life. I’ve been living in chronic pain for 17 years and to suddenly experience significant relief has been somewhat of a revelation.
I’ve still a long way to go but I am more hopeful than ever before that a full recovery is possible. Because my case was quite severe and I have effectively gone untreated for so long it will probably take time and dedication but the improvements I’ve seen in recent months are extremely promising. Even if the primary cause of my symptoms is not Lyme disease I still feel one step closer to unraveling the mystery.
My main motivation for writing this post is that it may reach others who have been diagnosed with Chronic Fatigue Syndrome or similar conditions but are still struggling to recover their health despite diligently applying natural therapeutic methods. I feel like so many years of suffering could have been avoided if I had this knowledge and was able to consider Lyme disease as a likely cause when my symptoms first began.
If you’ve tried other treatments without achieving the desired and expected outcomes then you might consider the possibility that you could be dealing with Lyme disease. It would certainly be worthwhile to discuss this with your health provider or seek out a Lyme-literate physician so that they can evaluate your situation with further testing or conduct a trial on an appropriate herbal protocol to assess your response to this type of treatment.
Whichever approach you take to managing symptoms, a high-raw fruit-based diet is an essential foundation. Without moving lymph and getting the kidneys filtering through a raw food detox diet, any other remedies will be limited in their effectiveness. Combining a cleansing diet with the appropriate botanical herbal therapies can be very powerful and with patience and persistence can yield significant improvements in even the most chronic health issues.
Have you found success in the treatment of Lyme disease or chronic fatigue syndrome with the raw food diet or herbal medicine? I would love to hear your story.
Image credit: http://www.lymediseasemexico.com/
Light photograph designed by Jcomp – Freepik.com