Do a Google search for "My Lyme Disease is not the IDSA Lyme Disease". See what pops up! Keep writing and posting your stories. Let's get the first few search pages to be filled with our stories. Keep the existing stories at the top of the list by reading them, commenting and sharing them with your friends and family.
Below is what I added to my side bar of both my blogs.
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. 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 at the time 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 http://www.lymediseaseaction.org.uk/ 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 the 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 http://www.lymediseaseaction.org.uk/ 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, Polymyalgia 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.
Monday, 25 January 2010 ME/CFS, FIBROMYALGIA, LYME DISEASE UPDATE
An update on my journey from ME/CFS, Fibromyalgia, Arthritis and Muscle weakness, Polymyalgia Rheumatica, to Lyme Disease and a cure for my illness which started in 2003.
I have details of my story on the right hand column on my blog and decided it was time to post an update.
I originally started Joanne's Cottage Garden as a record of my garden, I was able to enjoy gardening once again after an illness of 6 years. Those who followed that blog will notice my mention of my ongoing Lyme Disease symptoms, mainly in my legs.
A few months ago I started Looking at Lyme Disease blog in order to post information that interested me.
Over the last year my symptoms have continued to improve. My scariest symptom was swallowing problems which improved on Doxycycline but returned on Amoxycillin and improved again on a combination of Amoxycillin and Clarithromycin. I tried many times to reduce the Clarithromycin and always my arthritis and muscle weakness would deteriorate but by week three the worst symptom, the swallowing problems were the ones that would push me back into taking Clarithromycin again.
In November 2009 I stopped antibiotics. I still had some symptoms in knees, feet and facial tingling and twitching, I was never sure what was just muscle problems and what was peripheral neuropathies. My GP had discussed the Chief Medical Officers letter with me (details of this on Lyme Disease Action website). I had mistakenly thought she was going to refuse any further prescriptions and so decided to stop antibiotics whilst still having some in hand for emergency (Lyme patients would understand this, others not familiar with the problems getting treatment may not).
It is now week 13 since stopping antibiotics. So far my symptoms have deteriorated, weeks 4, 8 and 12 being the worst and symptoms picking up in between. Symptoms have appeared in a variable way in calf muscles, knees, wrists, feet, face and rt hip. So far I am delighted that my immune system seems to be coping and within a few days of any new symptom appearing, my immune system seems to get on top of it. This is what we are aiming for the immune system in control.
I did see my LLMD and he confirmed I still had Lyme like symptoms and at some point more or less definitely would need antibiotics again, but not just now. He advised me that many of the USA Lyme doctors would treat more aggressively and for longer. This I know, many would treat with cyst busting drugs, we discussed this and decided not to do so at present. The reason for my cycling symptoms is thought to be the dormant infection (which goes into cysts) replicating usually on a 4 weekly cycle.
So at present I am not as well as I was when last on antibiotics, fatigue being another of my problems but not the chronic fatigue that doesn't improve with rest. I am delighted not to be popping pills and delighted that generally my health is still improving so fingers crossed.
Discussing my situation with my GP she is as always very supportive and if the time comes when I need further treatment I am fortunate to have both my doctors there to support me.
I have to say that I have been very very lucky, so many Lyme Patients are far sicker than I ever have been even though there was a time three years ago when I did not want my life to go on because of the endless unremitting pain. It has been a very long and difficult recovery nearly three years of antibiotics, I suspect the 20 months of steroids given for the Polymyalgia Rheumatica Diagnosis would have compromised my immune system and made my recovery more protracted.
For now it is a joy to be pain free and no longer on any medication.
As of December2010
Sadly after a 5 month break off antibiotics my symptoms deteriorated sufficient for me to once again start antibiotics. Some of these symptoms are those described as Peripheral Neuropathies, facial, tingling and twitching, problems with vision, flashing lights and blurred vision, and tingling and numbness in legs and feet. Thankfully they responded well to antibiotics and whilst remaining on them I remain virtually 100% with only one or two remaining symptoms that have continued to improve month on month.