LOOKING AT LYME DISEASE - MSIDS: HEALCLICK

Tuesday 14 January 2014

HEALCLICK - PATIENT POWER

Our Story in 2 Minutes from HealClick on Vimeo.

Today is the launch of HealClick, a website matching patients with similar conditions so they can share relevant treatments and experiences. Above is a 2-minute video illustration of who they are and what they're doing:

I have been visiting Internet sites now over the last 10 years since becoming ill and having many different diagnosis. It is clear to me that patients are becoming much better informed and sharing information and research that they can discuss with their doctors in order to find the best treatments to help themselves. No longer must we suffer in silence depending on the sole opinions and experiences of one doctor, there is so much more available that might help us.

This sounds to be a very promising website where patients can share information and maybe it may help to lead to better research projects.

Patients do seem to be leading the way over treatments and research agendas in some of these little understood illnesses - just the few that I have been diagnosed with Fibromyalgia, ME/CFS, Musculo skeletal disease, Polymyalgia Rheumatica and finally Lyme disease (which once treated for, on long courses of antibiotics improved my health), all have overlapping symptoms which are also found in many other diseases.

Sign up at www.HealClick.com

Help us grow at http://www.indiegogo.com/projects/revolutionizing-patient-sharing/
Below is a summary of Healclick's aims.

- HealClick is completely free and will always be.
- We are a site created for patients by patients. Our co-founders tried to find a site that filled their needs for social support and medical information sharing. After they couldn't find what they were looking for they decided to just make it themselves.
- Our site is for patients only. We don't recruit Doctors or researchers because we want to hear directly from patients about what works for them and what doesn't.
- Matching is what sets us apart. Our site gives you a percentage match to every other member. This way you know at a glance how similar you are with regards to your diagnosis, symptoms, and even treatments.
- Start any kind of topic. If you have a question or an experience to share, we want to hear it.
- Review any type of treatment. Tell us about your experience, and compare your results with others.
- Our site offers unique social support. The founders, writers, and community managers are all patients.We foster a positive and caring atmosphere where people can share lighthearted humor and successes as well as support each other through hard times and setbacks.
- The medical information that our members provide won't go to waste; it will be used to fuel new research! We will share the anonymized data with researchers that we believe have patients best interests in mind. More information on how we de-identify data here: http://www.hhs.gov/ocr/privacy/hipaa/understanding/coveredentities/De-identification/guidance.html
- Privacy is incredibly important to us. Not just with regards to data for research, but with the entire site. Usernames, pictures, and profiles will never be made available to the public.

HealClick www.healclick.com

Patient power, what a difference it made to the AIDS communities in the early 1980's and that was without the resources we have today on the Internet. I look forward to following the development of this new website Healclick.

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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

Tuesday 14 January 2014

HEALCLICK - PATIENT POWER

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