Monday, 22 October 2012


You can read my personal story in the right hand side bar of this blog simply put what started as a Fibromyalgia diagnosis after further deterioration and other diagnoses ended up 4 years later being diagnosed as a bacterial infection and on long term antibiotics I have no Fibromyalgia nor the many Arthritis symptoms or Muscle problems.

I currently follow various sites on Facebook and it concerns me reading the Fibromyalgia sites that few doctors ever bother to look beyond the diagnosis of Fibromyalgia - It is just a name given to symptoms.

What about considering the causes, of which I am sure there will be several?

What about a trial of antibiotics just in case like me it is an underlying stealth pathogen - Mycoplasma, Chlamydia Pneumonia, Bartonella, Borrelia just to name a few. The testing for all these pathogens is poor so negative tests do not always mean you do not have the infection but doctors clearly do not even bother to test.

A trial of say Doxycycline for 3 months in line with guidelines for Lyme disease(Borrelia), there are similar recommendations for Chlamydia Pneumonia, Bartonella, Mycoplasma would it really compromise a person's health as much as some currently prescribed treatments do or can. I was given steroids for 20 months - I wish I knew then what I know now and how damaging they can be to our immune systems if we have any underlying infections bacterial and viral. I was also advised to take anti depressants - although I had no history or symptoms of depression - imagine the consequences of dosing someone up with anti depressants when there is no depression -Zoombie state and a cycle of ups and downs maybe even leading to hyper manic state as the system becomes unbalanced? (Case of a family member whose actually problem turned out to be cancer)

So fellow Fibromyalgia sufferers do your research there is much out there on the World wide web and no longer do we have to just be dismissed with a syndrome and something to suppress our immune systems response - What is it a response to? - do we all really believe the assumption that our immune systems have gone mad and are attacking self, if so why do those of us who finally get diagnosed with an underlying infection such as in my case Lyme Disease get better on long term antibiotics?

The most interesting presentation was one I saw of Richard Horowitz on M.S.I.D.S Multi systemic Infectious Diseases Syndrome I posted about it here 

Do your research and then discuss with your doctors, but remember Doctors are humans to, they make mistakes, but we live with the consequences - they do not necessarily learn or even know when they make a mistake but continue on and on to the next and the next patient believing that because that is what they do then they must be right - science is emerging to turn many misconceptions upside down but medicine is slow to follow the lead of science.

Good luck in finding treatment that works for you and maybe even the underlying causes to your condition.

1 comment:

  1. Thank you for sharing your story. I still find it hard to believe you were on steroids for as long as you were, and am relieved that antibiotics improved your condition.

    One thing I would like to see are some clinical trials for the treatment of chronic Lyme disease using longer term antibiotic combinations - combined with filgrastim or Low Dose Naltrexone. As time goes on, I am convinced that it is a mix of persistent infection and immune dysregulation which triggers symptoms with which we have suffered.