NICE Guidelines & Our Country’s View On Lyme
NICE have recently released their new guidelines on Lyme disease to the public.
We had all hoped for more, far more than what we read & received. For months many Lymie’s have spent hours emailing their MP’s, health ministers, magazines, newspapers and shared their person stories in the hope that the health industry would wake up and take notice of this serious and dangerous epidemic.
We weren’t so lucky.
Public Health England are yet to give us their finalised new guidelines, which I have been told by our local MP will be later this year. Though guidelines published by Public Health England have not been revised since July 2014 or even looked over since 2015. This is extremely over-due as more and more people are becoming infected with Borrelia ( Lyme ). Rates rising 300 per cent since 2011, which I am sure you will agree is very alarming.
The 2014 guidelines stated that 1/3 Of bites did not present a rash but may present flu like symptoms, headaches and/or neurological symptoms. So if a rash was not present don’t count out the possibility of Lyme.
It clearly states that Lyme is present in most of the UK, mainland Europe and the U.S.
Doxycycline being the preferred antibiotic to use. For the standard two week course. If symptoms persist then the antibiotics can be used for up to four weeks.
It provides only 3 possible co-infections that may be interfering with the patient’s healing / they could have also being infected with.
There is zero mention of long term treatments and chronic Lyme. There is no mention of alertnative treatments or testing. Co-infections and treatment for them are not considered and lack in detail.
We all know that tests and treatments are extremely expensive and don’t have a good success rate in many cases ( because of patients being unique due to our different co-infections.) You may be questioning - why do patients require different ( tailor-made) treatment programmes? Well we are all unique human beings and ticks are the same, no tick is actually the same. So what they have passed on to you won’t be the same as another patient. You also have to take in to account our body’s - everybody reacts differently to different treatments.
Lyme is not like your common bacteria infection that can easily be killed off with a common antibiotic on a two week time scale.
It adapts, changing YOUR body’s make-up; DNA, cells and responses. Your immune system becomes confused, suppressed and now believes your body it once regnosied and worked with to now be unrecognisable and the new enemy it must attack. The bacteria now calls your organ’s home and will be forever with you.
This does not mean that the antibiotics do not work for short term Lyme ( before the Borrelia leave the bloodstream and enter the cells and organs ) and antibiotics can work in slowing the reproduction of the bacteria and can make them doormat.
It is widely known and as the new NICE guidlines do address that long-term antibiotic treatments in the end do not work to get a hold of Lyme. Patients only seem to benefit short term from their use. Often having to be on up to 3 antibiotics at once or working their way through a number of different ones as the bacteria are clever and adapt themselves and your immune system to fight the antibiotics that enter the system and protect themselves.
Worldwide there is more research being done into alternative treatments that may lead to higher and longer term success rates.
Such as herbal, laser and Ozone treatments.
This country is miles behind. We can’t seek treatment, let alone more expensive, alternative, ‘out of the box’ options.
We all have travel miles, spend time away from family and friends and seek abroad care to receive treatment.
The NICE guidelines;
They displayed zero steps forward in Lyme patients being treated any better or any luck with more reliable tests and treatments. So there was zero hope of Lyme being more recognised.
Yet, again the guidelines were very negative towards Lyme.
Stating how difficult it is to diagnosis due to symptoms mimicing many other illnesses and not recognising chronic Lyme. Just simply saying if the outlined antibiotic treatment does not work then other routes for the paitents’ ill-health must be explored.
Really meaning if you read between the lines that if our symptoms persist we will be deemed as crazy, attention seeking and/or severely depressed.
But to add real salt to the wound the guidelines state that all paitents must be made aware that negative test results are a very high possibility because the bacteria doesn’t always show up on lab results. Yet they refuse to accept overseas results!
Armin Labs- where I sent my bloods to and got two sets of positive Lyme results from are at the top of the list for more accurate and reliable Lyme testing & results in the world.
UK lab testing is second from last on the list of reliable results. (27 out 28). Stating their testing and results are not as accurate or reliable.
So how can someone at the bottom of the list discredit Labs and countries whom have put the money in, done the research and invested in more accurate, update equipment to get more accurate results as ‘false’ that don’t mean toffee!
It beggars belief!
They tell us to expect a negative result to protect their own backs when they don’t treat you for Lyme.
Also they keep raising the rate for a positive result. Meaning less and less people get treated for Lyme and receive negative results despite on-going debilitating symptoms and those who do get a positive result their Lyme is so severe and imbedded that it will be chronic Lyme. Something that requires long term treatment not a two week stint! Even though a positive result means the patient will be treated under the NHS, after the antibiotic course you still most likely be very poorly. They will now believe you are cured from Lyme and you will get the crazy label.
It’s a lose, lose game for us the paitents.
Soon it will be a massive loss for the health industry when Lyme gets more of a hold and infects more innocent people who will require more treatment off them. Instead of trying to get a hold on the disease and preventing it from blowing up further.
I know for the 2 sets of positive results I have received from Armin, especially the second set where my positive result was ridiculously high! 2.4 being my result when a positive result is seen normally within the range of 0.69-1.0. My Lyme from years of misdiagnosis and ignorance has caused it to do high amounts of damage ( which all can clearly see ) on my body and has left me with an illness I will be battling with for life or until a cure is finally found.
I do not want this for everyone who becomes infected with Lyme!!
I blog, I research and I fight to help prevent people suffering in the ways I do and others suffering with chronic Lyme.
Yet we are deemed crazy and our illness labelled fake, false and ‘the trend’ by the media and health industry.
The health industry that are supposed to care for us and aid our healing are neglecting us and causing further damage to us.
It really has upset many paitents including myself.
It just goes to show we really do have to be our own hero’s and save ourselves.
From my years of battling I have lost faith and hope in the health industry which is upsetting but they have never helped or listened to me and my pain, just caused further agony.
The above proves why we can’t have faith in them.
This blow won’t cause us to back down, it only pushes us to do more and scream louder.
We will continue to scream and shout as loud as possible until they can no longer silence and dismiss US and this HELLISH diease.
We can only hope that with more awareness brings improved testing, treatments and general patient care.
Keep hope and faith in our hearts to fight on!
Love and peace