FIBROMYALGIA TREATMENT THAT WORKED

Monday 22 October 2012

FIBROMYALGIA TREATMENT THAT WORKED

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:

Camp Other2 November 2012 at 19:41
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.
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Lyme Life written in 2009

I started suffering with arthritis in mainly my large joints especially my knees 6 years ago. The symptoms varied and I remember saying that every joint was affected except my elbows to one doctor. I was told it would be hormonal and to take the usual supplements cod liver oil or glucosamine ( I would certainly recommend buying shares in the companies producing these supplements) They had no noticeable affect.

All my symptoms deteriorated significantly over a few weeks,4 years ago. Hips shoulders and knees being the worst and I started with muscle weakness in upper arms and upper legs. I had difficulty standing and walking across a room. I was unable to walk upstairs and my husband was making plans to convert to a downstairs bedroom. I had seen 5 doctors and 3 Rheumatologists and put on steroids for Poly Myalgia Rheumatica diagnosis. I had been diagnosed with Fibromyalgia and ME/CFS.

I have X rays and scans showing signs of osteoarthritis and Rheumatoid arthritis. ( later note.- the X rays done some years into treatment showed my hands completely normal no signs of inflammation or RA confirming how they felt - normal) I have been retired early from the Civil Service having lost my job not to mention my earning potential. My illness seemed to progress through my body not affecting the same joints left to right at the same time. I had bursitis in left hip, right hip, left elbow. I had synovial thickening in both wrists. At that time I could not lift and hold a magazine so lifting a kettle I could only do if a third full and with two hands. Each joint in my hands fingers feet and toes were affected. I had swallowing difficulties and many other symptoms. None of this describes the endless and awful pain whenever I moved or the tiredness but inability to get quality sleep.

Two years ago my GP gave me Amoxicilin for a sinus/throat/chest infection. All my arthritis symptoms improved. The course ended the symptoms deteriorated I started a second course the symptoms improved. The improvement was more significant than when I had started taking steroids. This led my GP to suspect Lyme Disease. I laughed because we do not travel abroad but she said they had had other cases in the surgery in the early stages of tick bite and Erythma Migrans rash. She said but you have not had a bite. I said oh yes I have I had two on my ankles with rashes, March 05 this was confirmed on her computer when I had seen a locum doctor. My worst symptoms were waking up feeling rigid and having to painfully flex every joint in my body before struggling to get up. The only other time I had experienced this was in May 2003 during a flu like illness like no other I had ever experienced. At that time I had a bite and similar rash on my right foot which lasted like the other rashes about four weeks. I had also consulted the surgery and it was dismissed as a virus. I walked our dog daily in the woods adjacent to our house where the deer roam, prime tick area. Thus started my very lengthy search about Lyme Disease leading me through Lyme Disease Action to a doctor who specialises in this illness. He confirmed my GP's suspicions. I never had a positive blood test but then they are antigen tests and there is much research that shows they are unreliable. In my case the year of steroids and many weeks antibiotics could have affected the results. So with a clinical diagnosis and following ILADS International Lyme and Associated Disease Society guidelines I continued on antibiotics for two years. Both my doctors continued to treat me despite of Health Protection Agency advising against long term antibiotics. I am now nearly 100% recovered I have no pain or muscle weakness. I can walk upstairs something I could not do for three and a half years. I can garden do house work and live a normal life. I still need to pace myself and with only a few months to 60 will not be looking to return to work. Life is such a joy. Sadly there is much controversy about Lyme Disease and doctors in UK are taught that it is so rare. Well where I live in Guildford I have been in contact with a dozen other people with it so perhaps not so rare as HPA would like us to believe. I am in touch with nearly 2000 other patients through a chat line Eurolyme most had been misdiagnosed with several other illnesses. Look at UK charity Lyme Disease Action if you want to read more about this illness. There are many MP's taking an interest in the problems surrounding diagnosis and treatment see above charity links into a recent meeting at the House of Commons.

Thank goodness there are some thinking doctors around who have courageously treated me against opposition and I have made such a miraculous recovery albeit rather a lengthy one. One day there will be many more people who are helped with their chronic illnesses when IDSA starts taking note of what our courageous LLMD’s are doing following ILADS Guidelines.

ME/CFS, Fibromyalgia, Poly Myalgia Rheumatica, Arthritis, Bell’s Palsy, MS,MN, ALS, Parkinson’s, Alzheimer’s, Heart Block, Stroke, Psychiatric, gastric problems the list is endless. Not all suffering from Lyme Borrelia but how many are even properly assessed for it.

UPDATE

UPDATE 10 January 2012