Chronic Lyme: The Disease That Doesnt Exist
Until recently, the Centers for Disease Control and Prevention flatly dismissed the idea of chronic Lyme disease. Despite many patients reporting debilitating long-term symptoms after being treated for Lyme disease.
Fortunately, recent studies have verified the existence of post-treatment Lyme disease syndrome. In fact, the CDC now includes information about it on their website.
But many practitioners havent gotten the word that there really is a chronic condition related to Lyme infection. Patients with ongoing symptoms of fatigue, joint pain or fuzzy thinking may find themselves facing a skeptical healthcare provider who doesnt recognize the symptoms relationship to Lyme disease.
We still dont know a lot about Lyme disease or why post-treatment Lyme syndrome occurs. And there is no consensus at all about how to treat it. Retreatment with IV antibiotics isnt particularly effective and may be harmful.
This leaves many people with chronic symptoms related to Lyme disease in a difficult place. Theres no question that theyre suffering from debilitating symptoms. And they deserve a practitioner who takes their concerns seriously. So do you! If your doctor isnt open to your questions, I encourage you to find someone who is.
Aucott JN. Posttreatment Lyme disease syndrome. Infect Dis Clin North Am. 2015 Jun 29:309-23. doi: 10.1016/j.idc.2015.02.012.
Microbes: A Key To Chronic Illness
The vast majority of microbes that inhabit the body are confined to the gut, skin, and body openings. Technically, however, these microbes are outside the tissues of the body. Because all microbes have the potential to consume our cells, the body maintains barriers to keep them out. The primary barriers include:
- Mucous membranes lining the mouth and nasal passages
- Bronchial passageways in the lungs
- Linings of the stomach and intestinal tract
In other words, even though our microbes are part of us, they are kept apart from the cells that make up our tissues because of the potential to do us harm. Of course, certain microbes have a higher potential to cause harm than others.
The microbes with the lowest potential for harm are defined as normal flora. Normal flora are microbes that your immune system knows better than any others its a relationship that has been honed over millions of years. Because the immune system is able to keep these microbes completely in check, the partnership is mutually beneficial.
We depend on our normal flora to keep other, more aggressive microbes in the gut and on the skin suppressed. Intestinal and skin diseases result when the balance of normal flora is disrupted by poor diet, chronic stress, or antibiotic therapy.
A microbe that can do us harm is called a pathogen. The potential of a pathogen to do harm is more about the relationship our immune system has with a particular microbe than the microbe itself.
I Did Not Feel Better After The Antibiotics So I Went The Route Of Working With Alternative Medicine Doctors To Heal And It Worked For Me
We tried a lot of remedies, from homeopathic drops to infrared sauna therapy. But the biggest thing that made a difference was lowering inflammation by changing my diet drastically. Currently, Im slowly reintroducing food to see if I can tolerate it without an inflammatory response.
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Lyme Disease Uk Statement
Lyme Disease UK, a patient charity, was present at the SMC briefing, and promptly issued a statement:
We are disappointed in the proposition put forward at the briefing at the Science Media Centre today, that many possible Lyme disease sufferers actually have Chronic Fatigue Syndrome, a condition that has no diagnostic test and relies on the exclusion of other conditions
We agree that a disservice is being done to patients who suspect that they may have Lyme disease following a rash, multi-systemic symptoms or a positive blood test.
Many doctors do not recognise the EM rash which is diagnostic of the disease itself. Many are unaware that ticks infected with the bacteria that causes Lyme disease have been found in every county in the UK and many know nothing about the dire consequences of missing or incorrectly treating an acute Lyme infection.
These are the key messages that doctors and the general public need to be informed about. There should not be a downplaying of the currently inaccurate incidence figures or an over-reliance on serological testing, especially when there has been great progress made this year in terms of raising awareness of the disease.
The inference that patients would feel less stigmatised by a Lyme disease diagnosis than they would a Chronic Fatigue Syndrome diagnosis, is without substance. Both conditions are severely stigmatised with a lack of treatment options, if any, available on the NHS.
Failure Of Conventional Treatment Of Lyme Disease
When detected early, it is thought that Lyme disease is easily eradicated using a course of oral antibiotics such as amoxicillin or doxycycline. Indeed, most sufferers react quite well to treatment, especially in the early stages, with the symptoms of acute Lyme disease disappearing and patients able to resume their normal life seemingly free of the infection and all its symptoms. However, as mentioned previously, a low level of Borrelia spirochete bacteria often continues to persist undetected in the sufferers body. This is where conventional therapies fail.
Remember, once chronic Lyme disease arrives on your doorstep, you must be prepared for a multi-prone integrated approach for successful long-term recovery. Even the best antibiotics tend to fail unless they are delivered in the proper dose and timing. Otherwise, slow or retarded recovery remains significant clinical challenge.
The key factor determining overall success is how strong the body is intrinsically. No antibiotic can do its job successfully without the assistance of our bodys optimized internal stress control mechanism. This job is ultimately the responsibility of the bodys built in NEM stress response system, which controls the immune system and inflammatory responses of our body through a variety of biological systems and circuits. The adrenal glands also play a major role.
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Eventually I Had Over 100 Symptoms There Was Something Wrong This Wasnt Me Being A Tired New Mom
I knew I had so many symptoms because, at each doctors office I visited, Id have to fill out an intake form and list them all. Beyond the fatigue, I developed pretty bizarre symptoms. My muscles would twitch and wouldnt stop. In the middle-of-the-night, Id wake up shaking and my husband would have to hold me until it passed. The fatigue was like being weighed down by bags of sand.
When you write even 30 or 40 symptoms, the personnel at the office start giving you looks like something is wrong with you mentally. I was telling the truth. Ask any member of my family who has been through a day of this hell with me. The longer medical doctors put you off and dont take you seriously, the crazier you look. My gut, though? It said something was off.
Lyme Disease: A Cause Of Fibromyalgia Chronic Fatigue And Arthritis
Lyme Disease: a cause of fibromyalgia, chronic fatigue and arthritisBy Nicola McFadzean, N.D.
Lyme disease was once thought of as an obscure disease that only affected people living in the northeast. Increasingly, however, Lyme disease is showing itself to be more prevalent than ever, and more widespread throughout the country, and indeed the world.
The number of Lyme disease cases is difficult to estimate because of both unreported and undiagnosed cases. The number of reported cases exceeds 20,000 per year, and climbing sharply, while the estimate of actual cases is approximately 100,000 per year.
The primary organism behind Lyme disease is a spirochete called Borrelia burgdorferi. A spirochete is a type of bacteria that is long, slender, and assumes a spiral shape. Tick bites are one of the more common routes of transmission however, more recent research has shown that mosquitoes can transmit the Borrelia spirochetes. Lyme frequently appears in multiple members of the family but can present differently. For example, a child has autism, while his mother has fibromyalgia. Both may test positive for Lyme disease.
Many individuals with chronic Lyme disease have other health issues that must be addressed alongside treating the spirochete itself. Among these issues are mold toxicity, parasite infections in the gut, heavy metal toxicity and hormone imbalance. Natural remedies can be used effectively to address the majority of those issues.
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Boiling Point: The Lyme + Fibromyalgia + Chronic Fatigue Connection
The misery of chronic illness is very real. But if youre the one whos suffering, you know that those around you typically cant see it or understand it not family, friends, or even medical providers.
They dont know what its like:
to push through oppressive fatigue day after day.to be tired beyond exhaustion but unable to sleep.to ache all over so badly that all you want to do is curl up in a ball inside a dark closet.to feel like you have the flu every day of your life but still have to go to work.to be isolated, both socially and professionally.to have bizarre symptoms that no one can put a finger on.to be told that all your lab tests are normal, even though something is obviously wrong.to become dependent on symptom-suppressing drugs prescribed by well-meaning doctors who didnt know enough to know better.
I can relate better than most doctors because Ive lived it. I am part of a growing epidemic of people suffering from chronic ailments that the modern medical system is at a loss to help.
An unexpected twist during my late 40s changed my life and career path forever. Unrelenting stress from a too-busy medical practice combined with an entanglement of unpredicted life stressors plunged me into chronic misery that took me 10 years to escape.
Then, I became the patient I could almost sense my doctors roll their eyes the minute I came through the door.
Chronic Fatigue Syndrome In Patients With Lyme Borreliosis
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The Name Matters: Lyme Fibromyalgia Or Chronic Fatigue Syndrome
Many people with Lyme disease are incorrectly diagnosed as having fibromyalgia or chronic fatigue syndrome. In my Seattle practice, before I became a Lyme disease physician, my main focus was treating fibromyalgia and chronic fatigue syndrome. In 2004 one of my patients asked for Lyme disease testing. Her pcr test for Lyme came back positive. This got me thinking that others in my practice could have Lyme disease too. So I tested everyone in my practice for Lyme that had a diagnosis of fibromyalgia and/or chronic fatigue syndrome. I discovered that 30 percent of my patients actually had Lyme disease causing their problems.
A Few Words About Lyme Disease Treatment
If you discover you have Lyme instead of fibromyalgia or chronic fatigue syndrome this means you have a great chance to improve your health. As you consider your treatment options, be aware recovering from Lyme requires more than antibiotics. To recover most people have to address additional imbalances and health assaults that contribute to the illness. For a list of possible things you should address see What is Lyme Disease? A Mess of Things. In The Ross Lyme Support Protocol, I lay out a full treatment approach that addresses the most important issues to improve your health.
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Real Solutions For Chronic Immune Dysfunction
I divide options for overcoming illnesses associated with Chronic Immune Dysfunction and stealth microbes into two categories: Heroic Therapies and Restorative Therapies.
A third category of solutions, Symptomatic Therapies, is best reserved for acute relief. Specifically directed at controlling symptoms, Symptomatic Therapies come mostly in the form of prescription drugs and contribute only minimally to healing and wellness.
Everything From Treatment Time To How To Talk To Your Doctor
Yolanda Hadid’s story of discovering she had Lyme disease is heartbreaking. For years, doctors told her she “looked” healthy, and was even diagnosed with chronic fatigue before finally landing on her Lyme disease diagnosis in 2012. Though the diagnoses provided some relief, it also left her with a whole new set of questions. For starters, what is Lyme disease, and what could be done to get relief from her symptoms?
It’s helpful to know the signs of Lyme disease, and when to bring them up to your doctor if your concerns over fatigue seem to be taking over your life. Although the disease is curable with antibiotics, the challenge revolves around the diagnosis itself. The first case of Lyme disease was only diagnosed in the mid-1970s. Today, it is estimated that approximately 30,000 people in the United States get Lyme disease every year, according to the Center of Disease Control and Prevention , but that number may actually be closer to 300,000 when it includes cases that were not directly reported to the CDC. Learn more about the signs and what should be done immediately, if you or someone in your family believes you may have the disease.
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The Confusing Terminology Of Chronic Lyme Disease
The mere name chronic Lyme disease is in itself a source of confusion. Lyme disease, in conventional use, specifically describes infection with the tick-borne spirochete B burgdorferi sensu lato. The diagnosis chronic Lyme disease, by incorporating that terminology, connotes a similar degree of microbiologic specificity the addition of the word chronic further implies that there is some distinction between chronic Lyme disease and other manifestations of the infection. This distinction in itself is problematic because several manifestations of Lyme disease may indeed present subacutely or chronically, including Lyme arthritis, acrodermatitis chronicum atrophicans, borrelial lymphocytoma, and late Lyme encephalopathy.
Chronic Lyme disease, however, has no clinical definition and is not characterized by any objective clinical findings. The only published attempt to define CLD provisionally produced a description too broad to distinguish CLD from myriad other medical conditions, and the case definition did not mention evidence of B burgdorferi infection . The absence of a definition makes it impossible to investigate whether a patient population with putative CLD has evidence of infection with B burgdorferi this would seem to be a basic requirement to include a syndrome within the term Lyme disease. It stands to reason that it is impossible to even posit a well-designed antibiotic trial when the study population is undefined.
Accurate Diagnosis Is Key
If your chronic fatigue symptoms are caused by Lyme disease or another tick-borne illness, it is crucial that you get the right diagnosis. The bacterial infection requires its own treatment including antibiotics and often other treatments, depending on the severity or length of illness and will not be addressed through treating the fatigue alone. Learn more about the testing for Lyme disease and other tick-borne diseases with IGeneX today.
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Comprehensive Holistic Strategy Required
It should come as no surprise that those with chronic Lyme disease tend to do best when the following are considered:
- The adrenal glands are strong
- The NEM stress response system is optimized
- The liver and extracellular space is clean and uncongested
- The toxic metabolite load is kept well under the maximum load at all times
- There is a concerted effort to lower the pathogens biofilm ahead of time allowing easier penetration of natural or synthetic antibiotics
- Proper use of a basket of antibiotics, pulsed delivery with an intracellular focus and on a rotational basis to ensure pathogens are ill-prepared
- Always making sure the entire body is able to promptly get rid of the accumulation of toxins in order to avoid s retoxification reaction
- Ensuring the bodys nutritional reserves are optimized to allow sufficient drawdown of energy without draining the bodys energy supply, which could result in adrenal crashes or crises
- Ensuring the entire body is well protected from antibiotics which can cause collateral damage within and thus be very disruptive
- Dietary modifications, as needed, to optimize nutrition reserves and prevent a catabolic state
- Lifestyle modifications based on sleep hygiene and exercise tolerance.
New Mea Leaflet: Lyme Disease The Facts By Dr Charles Shepherd
Please note that this leaflet has been reproduced in the Autumn 2019 issue of ME Essential the magazine for members of the ME Association. It is also available from the website shop.
Lyme disease is aserious infection that is spread to humans by tick bites. It is always in thenews often because someone has not been diagnosed and treated during thecrucial early stages.
As a result, they mayhave developed a chronic and untreatable form of Lyme disease, which can causejoint, heart and neurological complications.
Lyme disease has anumber of symptoms that are very similar to ME/CFS. So, Lyme disease shouldalways be considered if there is any indication that ME/CFS symptoms may havefollowed a tick bite, or were accompanied by an unusual skin rash at the siteof a bite
The term chronic Lymedisease is now being used to describe a situation whereby a range ofME/CFS-like symptoms fatigue, muscle and joint pain, cognitive dysfunction are linked to Lyme disease, usually in the absence of a blood testconfirmation.
Although Lyme diseaseis now recognised by most doctors as a genuine and potentially serious medical condition,there are controversies and uncertainties surrounding the diagnostic testsbeing used and the methods of treatment in both the NHS and the private medicalsector.
Lack of medical education about Lyme disease also means that late diagnosis and misdiagnosis are still occurring just as with ME/CFS
The ME Association
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