Tuesday, 1 June 2010


During my recovery from my long chronic illness I have like many of us do, turned to the internet for information. When we are well we never think to question health issues and I had always assumed my doctor knows best to a greater extent.

It wasn't until my experiences of incompetent doctors and arrogant consultants that I really started to question my illness, Arthritis, Muscle weakness, Peripheral Neuropathy Dysphagia. The more I have read, the more amazed I am at how little is known about the cause of most illnesses.

Oh yes medics know that if you suppress the immune system with this steroid or that anti inflammatory then symptoms subside but what of why that inflammation is there in the first place? Is it all in my head because the tests don't show anything? Can one mentally make ones body produce inflammation selectively joint by joint and muscle by muscle not to mention the tingling, burning and twitching? Well that is what some doctors suggest. Has the Immune system gone wonky and is attacking it's own body? Well there is no direct proof of that, it is only an assumption.

I left a comment recently on some medical blog and was told in no uncertain terms that my improvements were placebo or anti inflammatory effects of antibiotics and couldn't possibly be that they were dealing with a long standing infection. One wonders if they treat their TB, Leprosy or Syphilis patients in the same way, because Lyme Disease is as complex as Leprosy and TB and even more complex than Syphilis.

I have been astounded at the Shenanigans the IDSA has got up to. 4 out of 8 of their panel were not happy with the Blood tests for Lyme Disease. What did IDSA do? Nothing!

It seems that all the evidence and research presented to them details of some can be found on www.ilads.org was dismissed as not relevant. Why? because they were not Randomised Placebo Controlled Trials. The only four ever done all had serious conflicts and were open to very different interpretation.

Now the latest from the IDSA seems that in fact Practise Guidelines are not as most medics believed based on “evidence based medicine”.

At the last IDSA annual meeting, two poster sessions said that most of the IDSA guideline recommendations were not based on good evidence, but on opinion. It turns out that while the IDSA gives very strong recommendations, they are not supported by much actual evidence.

Do read what Lorraine Johnson has to say on this matter on her blog Lyme Policy Wonk by clicking here

So while certain peoples' opinions are keeping the lid on the extent that Lyme disease is affecting so many thousands of patients World Wide it is best to get well informed and if like me you are told you have Fibromyalgia, ME/CFS, Arthritis, Muscle Weakness, Muskulo Skeletal Disease or Polymyalgia Rheumatica then do your own research because who knows like me it could turn out to be Lyme Disease, but don't expect too much help along the way from your doctors, unless of course they have spent many years treating patients with Lyme Disease.

Remember the doctors claiming Lyme Disease is so easy to cure on a few days antibiotics don't see their patients again, they are turned away to put up with their symptoms for evermore, or the really savy ones find a different doctor, one that knows that longer courses of antibiotics can help. But the opinions of the doctors having real successes are unimportant to the Bully boys of the IDSA.


  1. I have experience of treatment by the NHS for Lyme disease and now by an experienced ILADS doctor.The difference between the two approaches is unbelievable, it is like third world medicine compared to cutting edge medicine.

    Lyme disease is complex ,very individual and tricky to diagnose and treat. It takes time, a lot of time to truly understand the problems which are effecting each individual with tick borne disease. I cannot see the day when the NHS will ever give this time to each lyme patient, it is too costly. However how much more will it cost when many adults and children are chronically ill, when the NHS will only offer sticking plasters to treat symptoms and not address the underlying cause ?

  2. Anon
    Thank you for your comments how true.

    I have been fortunate to have had a balance of an experienced ILADS doctor as well as a supportive GP something which at present is rare but there are a growing number of doctors now in the UK recognising the complexities of Tick Borne Illnesses, which after all is a far more accurate description.

    I agree that initially recognising Lyme for what it is could cause a problem for the NHS but feel sure that as oral antibiotics are such inexpensive treatment compared to many sticking plaster medications and as was my experienced not only worked effectively but would have returned me back to the work force had I not now reached retirement age anyway.

    Far better to reduce chronic ill health after all that surely is the aim of our doctors? I am really starting to wonder after IDSA's disgraceful decision over the Guidelines for the second time.

  3. Thanks for keeping us informed, Joanne...You are always on top of everything!