Monday, 9 January 2012



Written in September 2011 by Lyle from London.

I am sure I am repeating what many people feel, but I wanted to say this:

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 Borellia bergdorferi
in the human body

I am angry that that same vastly wealthy, knowledgeable and powerful collection
of people has done little effective research into finding a drug or treatment
that definitively removes borellia bergdorferi

I am angry that significant numbers of the world's medical profession do not
even know of the existence of Lyme diease, 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 docycycline will remove borellia bergdorferi 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

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 one month of intra-muscular penicillin and oral
Cefuroxime supported by Allicin, Banderol/Samento in sequence and a mass of

I am angry that there is not a clear path that can be taken by all suffers from
Lyme disease that will clear their symptoms and allow them the lives they used
to lead - therefore saving society/insurers/government the vast ahnd rapdily
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

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 docycycline 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

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 focussing on helping us, the patients who
suffer every day?

Thank you Lyle from London for giving permission to re post your comment which you posted on Eurolyme.

Your experience was not dissimilar from my own, a history of my illness is in my right hand side bar of this blog.

Your recent post 'Improvement there is hope' starts by saying 'Six months ago I couldn't put my socks on or sit down without pain. When I stood up it was like a 90 year old creaking out of a chair, hobbling along for a while until the joints loosened up again.' 

ending :-
'Just wanted to say that the right treatment really does seem to work - if I continue to improve at the very slow but steady pace of the last two months then the future is bright. Yesterday I ran up the stairs - haven't been able to do that for the last 8 months!

How many patients with arthritis and muscle weakness and many other symptoms could in fact be suffering with an undiagnosed case of Lyme Disease and like you and I and many hundreds of others get well on long term antibiotics. It is like winning the lottery but actually even better what price can be put on regaining a healthy, pain free and without disability body.

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