THE LOST YEARS
From Summer 2018 Forum
It started with a twinge and ends with a whinge.
Virtually overnight my life had changed. I developed horrific pain following repetitive action affecting the full length of my arms. It remained that way for nine years. Gone were my passion for creating art and a career in advertising as a copywriter, as both required regular use of my anns. The pain would shoot down the full length of my arms and extend to the middle of my back remaining that way for a week after only twenty minutes use.
I did the rounds of doctors’ surgeries and physiotherapists but nothing helped my situation. Some doctors didn't believe me, while others worked in with the insurance industry to deliberately dismiss my claim. They were literally on the insurance company's payroll and got repeat referrals as they knew they could be relied upon to rule out the patients’ injuries. One thing I noticed was that they couldn't bring themselves to sign my damning reports and got their secretaries to do so. Unfortunately, two of them continue to review patients and they are still dismissing them.
This was before the implementation of the Australian Health Practitioners Regulation Agency and ratemds.com; the latter is where patients have their say and rate their experiences with those working in the health industries. It is of no coincidence the doctors l saw have bad reviews from other patients on this platform.
I decided to look for answers myself even though my medical knowledge was extremely limited. I researched doctors (there was no intemet then) and after about six years, I was fortunate to find a book by Dr Jay Goldstein who had just written Chronic Fatigue Syndromes: The Limbic Hypothesis, a book focusing on conditions like Myalgic Encelphalomyelitis, Fibromyalgia and Repetitive Strain Injury which often overlap. In the case of Myalgic Encephalomyelitis, sometimes referred to as Chronic Fatigue Syndrome, auto immune problems and brain dysfunction are involved. Unfortunately, l have the trifecta - all three - and was diagnosed by Dr Goldstein when l visited him in his surgery. That's where l saw an image of a patient's brain biopsy showing lesions surrounding the brain. While in in Califomia, l rang a researcher and he informed me that Dr Goldstein had the best handle on the brain. It is interesting to see that some researchers are now focusing on the brain in relation to ME.
In his book, I found a treatment that worked as a preventative measure. I would apply nitroglycerine patches normally used for heart patients. Dr Goldstein used prescription drugs in alternative ways and by applying half a patch before using my arms, I could alleviate the pain created by repetitive motions. I then would remove the patch after three hours. It worked brilliantly until a cardiologist I saw detected I had heart problems and recommended I didn't use it anymore. Naturally I was devastated as l thought my luck had run out.
Once again, Dr Goldstein came to the rescue. He visited Sydney from California and predicted a device similar to the one I now use. It is a pulsating magnet and operates on a lithium battery creating oxygen and blood flow to the brain. I can now use my arms as long as I like providing I wear it twenty four hours a day. The pulsating magnet was created by a Russian scientist who noted that their astronauts were returning from space with medical problems such as premature ageing and Arthritis.
Dr Goldstein's became my mentor and l wrote articles in patients’ newsletters highlighting his research. Along with Dr Mena from the Mayo Clinic, he conducted brain spect scans on ME patients in the late 1980s resulting in decreased blood flow to the brain. This led to his focus on neuroscience including brain dysfunction which was poorly imderstood by other researchers. He presented at many medical conferences and another researcher descnbed him as "a genius who has been badly treated". Then on another occasion the same researcher admitted "he is way above my head". The lack of comprehension regarding his work meant it is only now gaining limited interest by those who include brain problems in their research. I believe he was twenty five years ahead of his time and often wonder how long it will take before others fully comprehend his research findings. It is upsetting to see the delay and painful to see others repeating some aspects of it without realizing his enormous contribution particularly as millions suffer world wide.
Fortunately he documented his research in his books and a biochemist who reviewed one of them on line described his "as possibly the most brilliant physician of the 20th Century. As many great thinkers, he was so far ahead of his time that he was forced to toil in obscurity, making breakthrough after breakthrough, but unable to explain his breathtakingly elegant theories to the rest of the medical profession". Actually he did explain them at conferences, it was just that he was misunderstood.
The National CFIDS Foundation * 103 Aletha Rd, Needham Ma 02492 *(781) 449-3535 Fax (781) 449-8606