40 years of ME/CFS

A Forty Year Battle With ME/CFS

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The Road to ME/CFS

I had a hysterectomy at age 35 for adenomyosis. Following the surgery, I developed an infected hematoma and was given IV antibiotics for three days. I returned to work after 4 weeks feeling very fragile, but as a single mother, money was a necessity as I had no back up financial plan. I am not sure that I fully recovered. Soon after, I developed unrelenting fatigue, body pain, and brain fog. Seven months into this nightmare of extreme fatigue (sleeping up to 18 hours per day), headaches, severe joint pain, and many GP visits, the doctors decided that I had glandular fever. Blood tests taken by a hematologist, confirmed toxoplasmosis, a parasitic infection, and two courses of Dalacin C (clindamycin) antibiotic were prescribed. “Take this short course and you’ll soon be well again”. Forty years later, I’m still recovering!

After about 18 months of symptoms, I was diagnosed with myalgic encephalitis/chronic fatigue syndrome (ME/CFS), by a neurologist. This was in 1984. I was just 36 years old. No treatments or recognition by general practitioners was offered. I searched for treatments and discovered a US doctor who suggested Zantac – (Ranitidine, sold under the brand name Zantac among others, is a medication used to decrease stomach acid production). It was a breakthrough for me and my brain fog dissipated, although I reacted to a full strength dose and had to retreat to about a ⅛ of tablet to gain benefits. Unfortunately, I don’t recollect the physician’s name but I imported the cassette tapes of his talks and passed on to my GP who actually listened to them.

Cortisone Induced Secondary Adrenal Insufficiency

Early on, I suffered painful polyarthralgia particularly in my hands. My then GP prescribed a 5-day course of cortisone to reduce the inflammation. I returned to the clinic on morning of last dose of cortisone, which I hadn’t taken, and collapsed in front of the doctor. I was faint and sweaty and nauseated, so he put me in the back room to recover. After many questions, he decided I needed an injection of cortisone to get me upright and able to drive home. This began the start of the next 4 1/2 years of devastating secondary adrenal insufficiency and Addisonian crises. Addisonian crises are life-threatening bouts of severely low blood pressure, low blood sugar, and high blood levels of potassium.

I just could not wean off cortisone. Every time I weaned down to a small amount, I collapsed, requiring emergency treatment of adrenaline, cortisone and an extended recovery time. I put on heaps of weight and looked like a big water balloon. I consulted endocrinologists who insisted I reduce my cortisone intake, but every time, I weaned to a low level – boom –Addisonian crisis. I was so unhappy and unhealthy.

An endocrinologist recommended I have an ACTH Stimulation using Synacthen, which is a manufactured drug that acts like adrenocorticotropic hormone (ACTH) by stimulating the adrenal gland to produce more cortisol. This is a very specific test for diagnosing adrenal insufficiency. I told him I was nervous about the test as I knew there could be serious side effects. He brushed me off and I booked for the test.

Unfortunately, and almost predictably, I had an anaphylactic reaction and spent a night in intensive care. His comments “well that happens in about 1 in 10,000 people, so I’ve just had my 10,000!”

This was my life for 4.5 years. I was still endeavoring to work as a medical administrator with little compassion from my employer who just kept on saying “you need to get off the roids!!”

Vitamin C To Support the Adrenals and Wean Off Cortisone

Eventually, I was unable to work at all and found a general practitioner who had studied nutritional and environmental medicine. He categorically stated he could get me off cortisone with Vitamin C, which he said, supports the adrenal glands. I was doubtful but figured at least it would do me no harm.

For 9 months, I consumed much ascorbic acid and had weekly intravenous infusions of Vitamin C. I spent a couple of nights in hospital (just in case) and was finally free of cortisone. So much affection and blessings for my GP whom I’ve now regularly consulted for the past 27 years.

My health certainly improved after weaning off cortisone. My facial color was healthier and I had reasonable energy. No more ‘crashes’ which gave me much more stability. I had been gluten/dairy and sugar free for 5 years and had a partnership with a friend developing and delivering conferences for the medical fraternity and the general public. We ‘sold’ our illness back to medicos – a rather uplifting feeling.

A Possible Protocol For ME/CFS

In 1992, I undertook the very controversial Marshall Protocol to treat the ME/CFS. I did this protocol for approximately 5 years, as I was still ‘crashing’ and experiencing a lack of energy and brain fog regularly. The protocol suggests varying combinations of pulsed, low doses of specific bacteriostatic antibiotics, Olmesartan, a blood pressure drug, and the avoidance of Vitamin D. It was a struggle for sure, but I managed about five years on the Protocol and did very well. Had stability and much more energy. This is medically prescribed and I needed prescriptions from my GP who understood the underlying theory for the Protocol. I eventually weaned off all drugs and stayed well.

Diet and Symptoms

I have changed my diet at different times. I am currently grain free as best as I can. I have had to remove some foods as I suffer gout from time to time so keep my uric acid levels low. I only eat berries now as sucrose has been implicated in gout.

I now have a chronic inflammatory condition which includes osteoarthritis in almost every joint of my body and have had two episodes of CRPS (complex regional pain syndrome). I am very reactive to some drugs – morphine, anti-inflammatories, codeine, some antibiotics, and surprisingly, turmeric.

After weaning off cortisone, I spent five years, dairy, sugar and gluten free and now keep dairy to a minimum and don’t consume processed foods as they contain too much sugar and nasty vegetable oils. I learned a lot from the Weston A. Price Foundation and attended a couple of Sally Fallon’s conferences here in Brisbane where I finally learned the truth about food – no low fats products and use animal fats to cook in!

My health had improved and I volunteered for a wonderful not for profit organization The Pyjama Foundation, where Pyjama Angels read and assist children in foster care for an hour a week. I enjoyed my five years with them and became an “Angel Trainer” – a great title. I retired from that 5 years ago with great disappointment as it was the best unpaid job I’d ever had.

My health was deteriorating and I couldn’t make that commitment any more. Unfortunately, I have no contact with my son and daughter or grandchildren. They have no understanding of this ME/CFS and are not supportive.

Where I Am Now

I am now metabolically inflexible with weight gain, elevated blood pressure and glucose levels requiring me to add some new pharma drugs. I am working with a low carb diet and my weight is ever so slowly decreasing.

In July 2020, I was involved in a car accident and have not recovered to an extent I’m happy with. Then in May of this year, I had a trip onto my bathroom floor and that has set me back again with an injured knee that requires treatment. That is one thing with chronic illness, every little thing needs to be thoroughly checked. I had lots of x-rays for my knee because of severe pain but it wasn’t until I had an MRI 2 weeks ago that my injuries were discovered needing more attention.

Life has certainly thrown many health challenges my way since then and in the past two years I was diagnosed with glaucoma with some loss of sight and chronic kidney disease and liver dysfunction. I believe the glaucoma was caused by excessive cortisone, as is the chronic kidney disease and liver issues.

So 40 years on my health journey with ME/CFS and I am still upright. I am so cautious around cortisone and most drugs. Unfortunately, I developed acute dermatitis and had to use many, many tubes of cortisone cream – a love, hate relationship with this drug. It can be lifesaving but side effects can be brutal.

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Photo by Johnny Cohen on Unsplash.

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