Rant

It’s amazing what they can do nowadays isn’t it? They can do face transplants, make the deaf hear again, stop people dying of AIDS, treat loads of cancers really successfully and they’ve even eradicated smallpox. 

Yet like some terrible B movie, there is an almost total failure to treat or even recognise chronic Lyme and its little accomplices of co-infections and hormonal and metabolic meltdown.

People are dying (I have met two people who consider their relative/friend to have died of Lyme), people are committing suicide, people are losing their jobs, relationships are strained to breaking point, children are robbed of their childhood, babies are born infected, people go psychotic/demented/have personality changes/become depressed/massively anxious, people sell their homes and get into huge debt  to pay for treatment, people become comatose, people become completely incapacitated and need 24h care, people are paralysed, people have to live day in day out with crippling pain, people feel marginalise and paranoid that no-one believes them, people are desperately ill and just existing from  day to day, on benefits, abandoned by the National Health Service that they  once believed in and left to rot.

None of this needs to happen. There is actually a way of stopping all of this. It’s not some amazing super-techno wonder-drug that costs a fortune, it’s just simple Antibiotics and recognition of tick-borne illness that people need.  Caught early, recognised as potentially serious, treated robustly with appropriate doses of the right antibiotics, most people can recover completely and quickly. 

Sometimes that doesn’t work, but experience with thousands of people has shown, that a knowledgeable and thoughtful  doctor can coax the majority of these people back to health- with enough time, antibiotics  and perhaps, anti-malarials, dietry changes and some supportive medications and supplements. 

It’s not even as though this is a new or incredibly rare disease- it’s been around for centuries and reasonably common for about 20 years . In the USA, it’s more common than HIV/AIDS and in the UK, it’s at least as common as Syphilis (by the HPA’s own rather conservative estimates). Syphilis and HIV are both recognised as potentially very serious, treated with long-term drugs, and both are routinely tested for by the blood service. None of these things are happening for Lyme and tick-borne disease. The same doctors that treat HIV and Syphilis are saying Lyme is curable by 30 days of antibiotics. When patients come back, still sick after their standard 30 days of antibiotics, they are suddenly, magically, either no longer infected with the Lyme bacteria, or the diagnosis is changed and it was never Lyme in the first place and they are now crazy/depressed/have post viral fatigue/chronic fatigue/post- Lyme syndrome etc and are basically shoved out of the door with a Bye Bye, don’t darken our ward again with your ranting nonsense about persistent Lyme.

This refusal to even consider the possibility that Lyme can persist, in its’ infective form, despite short term antibiotics is simply not supported by the evidence.  There are at least 80 studies showing the bacteria can survive antibiotics, sometimes, it has been shown to survive several months of antibiotics.  There are some studies showing long term antibiotic use can be beneficial, and there are thousands of patients of LLMD’s who can testify to that.  People who can afford to pay for this treatment usually recover all or almost all of their health. Unfortunately, these success stories are rarely documented in the literature, but they are there, in their thousands, living normal lives again as a result of long-term treatment. Sure, there is a scarcity of really good, double-blind placebo controlled studies showing long term treatment does work. However, by the same measure, there is a scarcity of really good double-blind placebo controlled studies showing long term treatment DOESN’T work. The handful of studies used to support the denialists argument are laughably flawed. The incredible ‘stealth pathogen’ biology of the bacteria is the key- once this is understood, it is obvious that short courses of antibiotics are just not going to cut the mustard. 

The trouble is, the Infectious Diseases  doctors  are too busy to read the literature. They put their faith in the authorities, the societies, the learned journals, to write guidelines to tell them the truth and how to deal with this weird disease that is so variable, so hard to diagnose, so hard to cure.

Guidelines - they should be an unbiased distillation of a thorough  search of all the available literature, right? They should be written by democratically-elected committees with representatives of patients, researchers and clinicians, right? They should adhere to NHS/recognised procedures to ensure an unbiased and accurate result, right? Wrong. They are actually written by a self-selected handful of biased Doctors, who have conflicts of interest and cannot, just cannot, admit that they might actually be wrong. Ego is the enemy of truth and these guideline authors have ego aplenty. 

There are other guidelines, written by groups of doctors who work at the coal face - they see patients every day who do get better with long-term antibiotics. They admit that no-one knows what the optimal treatments are. In fact, for a disease with so much variability, a one-size fits all solution will probably never be appropriate anyway. For the majority of overworked NHS doctors, these other guidelines are pretty much dismissed because they don’t have the kudos that the IDSA, CDC, HPA, EFNS and BIA have (that’s a lot of abbreviations!).

To me, it is disgraceful  that these organisations are abusing their power and influence and are allowing shoddily-written and researched (yet widely believed) papers and guidelines to be published. What hospital doctor or family GP, has the time or inclination to sit and read through reams of primary literature on a disease they see fairly little of? It should not be left to patients and patient organisations to educate the medics, but that is what is happening. Unfortunately, the years of ‘official’ misinformation and misleading guidance has taken its’ toll and many doctors are unreceptive to patients showing them scientific papers, positive test results, private diagnoses of Chronic Lyme. Many just don’t want to know.

So patients are suffering. Cast adrift, they either turn to herbal and untested remedies, or else buy antibiotics from the internet. The lucky few who can afford it are driven to private treatment, some, like myself, manage go abroad. The really unfortunate ones are either too ill or worn down to argue with their bin diagnoses or too poor to even afford the herbals/internet drugs. They generally become increasingly ill.

I feel I must end this rant on an optimistic note. There are a few, thinking doctors out there who suspect all is not quite right with the guidelines and official line on Lyme. Usually GP’s, some of these doctors will take the risk and prescribe long term antibiotics for patients – they see results, they know they are doing the right thing. They keep it quiet, the patients keep their identity secret, for fear of persecution. I’d just like to applaud those brave few (and also the tiny number of private Lyme docs in the UK) for putting their head above the parapet and helping us. Thank-you, I just wish there were more like you. Thank- you also, the campaigners, Lyme Disease Action, BADA-UK, the stalwarts who help the uninitiated, the people who are not giving up on this injustice. You are bright stars in a murky sky.