There is a curious undertone going on in the Lyme world. Patients are ill, very often for long periods of time. Diseases going on for long periods of time are generally called ‘chronic’ and yet many scientists & doctors who are tied to the IDSA guidelines INSIST that chronic Lyme doesn’t exist. Instead they like to blame the patient ‘you’ve had adequate treatment, your symptoms must be in your head, go see a psychiatrist’ or they blame it on a ‘syndrome’ by saying, ‘short treatment means a cure therefore you must have Post Lyme Syndrome or Chronic Fatigue Syndrome – (go take a walk & some anti-depressants).
Sadly the patient is left wondering what on earth has happened to science & medical advancement? Why are studies showing persistence in mice & humans constantly being ignored?
Here are some studies (in some cases by the IDSA guidelines authors themselves) showing persistence of infection & / or seronegative Lyme:
Here’s a link to many articles through the ages showing chronic Lyme by year of study
Here’s a look at patents & grants studying chronic Lyme
Plus links to many studies on cyst forms, seronegative Lyme & persistence
For an amazing list of files relating to Long Term Inflammation in Lyme & Defense Mechanisms of Borrelia bacteria (leading to chronic infection) please click here.
So why are we, the patients being left out in the cold?
Why is there so much fear among professionals to acknowledge that we have an under treated illness & are very sick patients. Please take a moment & imagine what it is like for the patient – yes the very patient that doctors seek to help during their training & yet seemingly disregard often quite arrogantly when faced with a chronically ill Lyme patient.
We need to acknowledge that Lyme is here to stay & that patients with sufficient management & care can get on the path to wellness. Do patients want to remain ill? 100% would agree with me that they would rather not!
Let’s work together to bring a cure to the sufferers of Lyme & tick-borne related illnesses & move science into the 21st century.
Finally, let’s spare a thought for the patient…
I am angry
by Lyle from London (with kind permission)
I am angry that the combined forces of the world’s medical and pharmaceutical powers haven’t seen fit to carry out concerted research to establish a test that provides a 100% proof of the existence or non-existence of Borrelia burgdorferi in the human body
I am angry that the same vastly wealthy, knowledgeable and powerful collection of people has done little effective research into finding a drug or treatment that definitively removes borrelia burgdorferi
I am angry that significant numbers of the world’s medical profession do not even know of the existence of Lyme disease, and would not recognise a bulls-eye rash as a definitive diagnosis of Lyme disease, let alone consider Lyme disease as a diagnosis for the multitude of other symptoms it can cause
I am angry that significant numbers of the world’s medical profession adhere to the belief that 2-4 weeks of doxycycline will remove borrelia burgdorferi from the human body despite the massive and continually increasing evidence that this is not true
I am angry that there are doctors in our supposedly enlightened culture who disdain their patients when they express the concern that they may have Lyme disease
I am angry that multitudes of doctors believe that the results from simple tests for the presence of Lyme disease are 100% accurate, despite evidence and statements to the contrary from the organisations carrying out those tests
I am angry at the ignorance of medical practitioners who believe that Lyme disease only exists in limited geographic areas, despite extensive evidence that ticks will attach themselves to any warm blooded creature, including birds who are self-evidently not limited to specific geographic areas
I am angry that my joints are unbelievably painful if challenged by any but the most mundane movements despite nearly three months of intra-muscular penicillin and oral Cefuroxime supported by Allicin, Banderol/Samento in sequence and a mass of supplements
I am angry that there is not a clear path that can be taken by all sufferers from Lyme disease that will clear their symptoms and allow them the lives they used to lead – therefore saving society/insurers/ government the vast and rapidly growing amounts of money required to help alleviate their pain, inability to work, need for support
I am angry that there are people far worse off than me who have struggled for years to return to some semblance of a quality of life and I can do nothing to help
I am angry that my healthy and active life has been taken away from me and the only avenue back is a long, very slow, very expensive and very painful clawing back using drugs and supplements that both I and my doctors hope will work, because none of us really knows for sure what the answer is or what the problem is – we just know that 2-4 weeks of doxycycline is not the answer
I am angry that there are thousands of people out there who cannot afford the same treatment and have to stumble along without the medical help they so sorely need
I am angry that there are people on this earth, let along doctors governing medical organisations, who cannot see the tsunami that is growing around us all and who insist on prosecuting the medical professionals who are trying to help us get well
To those doctors I say the following:
– The current tests for Lyme disease are known to be inconclusive – why are you not urging your profession and academe to focus on research to develop effective testing regimes?
– If Chronic Lyme disease does not exist then please tell me and thousands of other sufferers, what it is that is causing our symptoms – we are not depressed, and we are not imagining them.
– In the absence of conclusive tests – why do so many of your profession blame the patient rather than treating the symptoms?
– Evidence exists that long term antibiotic treatment has been successful in large numbers of cases. Why do you not pursue that path? Why do you attack it when the ‘accepted’ path has not demonstrated success? The ‘accepted’ treatment for ulcers was reduction of stomach acid until Barry Marshall and Robin Warren proved in 2005, by infecting and then treating themselves, that ulcers were caused by helicobacter pylori. Does this not suggest that we could face a similar situation with Lyme disease?
– Why are you wasting even a moment of your lives attacking doctors who are trying to treat us when you could be focusing on helping us, the patients who suffer every day?