Four years ago, her eyesight and health were deteriorating. Then, after being diagnosed with sarcoidosis, this Belfast Ireland resident took action and started Autoimmunity Research Foundation’s Marshall Protocol. Today most of her symptoms are gone and she’s thrilled to have played a part in the treatment that’s revolutionizing medicine. Meet Julia Greer.

How were you diagnosed?

It would have been funny if it hadn’t been so serious.

For many months I’d had gradually worsening eye troubles - ripples of ‘light’, increasing floaters and cobwebs, a painful feeling of pressure, and sore tiredness. I had four courses of steroid drops that only gave temporary relief each time; then the uveitis would come back with a vengeance.

A baffled eye consultant passed me on to another one, and he in turn passed me on to a third. He was a tall, unsmiling Greek god, cold as marble. For weeks he carried out every test in his book, while I got steadily worse. I thought I was losing my sight.

Then one day his eyes lit up. “I wonder…” he mused, and sent me for a blood test and a chest X-ray. Of course I read the note requesting the tests, which said ’suspect sarcoid’. I’d never heard of it, but thanks to the internet, I was a sarcoidosis armchair expert by the time the test results came back!

When I went back, the Greek god was actually smiling. “Good news,” he said (I kid you not), “you’ve got sarcoidosis!” I think what he meant was, I was a puzzle to be solved, he’d solved it, and now I could be shunted off to another department.

What were your symptoms like before the MP? What illnesses were you diagnosed with? Can you describe the progression of your disease?

As far as I was concerned, I had uveitis and hypercalcemia. I had no idea that my long string of other mild-to-moderate health problems had any connection to the sarc. In fact, when the Greek god told me I had sarcoidosis, my response was, “But that’s pretty serious, isn’t it? Why am I not more ill?” At this stage I had…

fatigue, ankle osteoarthritis, knee stiffness & pain, muscle cramps, limb & joint pains, insomnia, restless legs, ‘tennis elbow’, carpal tunnel syndrome, sweats, cough, dry mouth, tinnitus, numbness & nerve pains, lifelong eczema, hay fever, swollen glands, nose bleeds, nocturia (needing the bathroom in the night), dust mite allergy, unexplained bruising, arm fatigue (couldn’t reach something off a high shelf), phobia, brain fog, inability to read or concentrate, memory loss, and mild Obsessive Compulsive Disorder…

…but you get used to living with these things – “wear and tear, dear” as the young doctors tell us wrinklies – and I wouldn’t have said I was seriously ill. It’s only as I’ve watched this list gradually getting shorter as the MP has cured each symptom, that I’ve realised I’ve probably had sarc most of my life. Funnily enough, I never had much in the way of lung symptoms, yet most doctors think of sarc just as a lung disease.

How long have you been on the MP? How did you hear about the MP?

What I learned when I googled ‘sarcoidosis’ amazed me. Other sarc sufferers were describing symptoms of health troubles I’d had for many years, without realising there might be an underlying cause linking them all.

But the various support groups didn’t hold out much hope of permanent recovery. They seemed to be full of hurting people desperately trying to encourage each other through the agonies of the standard steroid treatments. And a frequent cry was, “My doctor says my test results are now okay; why do I still feel so awful?”

Sarcinfo.com was the original MP site, before it even got the nickname Marshall Protocol, and it was the exception. There I learned of a biomedical researcher, Trevor Marshall PhD, who believed he had cured himself of sarc. His theory that it was a bacterial infection seemed to make sense. He had experimented with different antibiotics with some measure of success, notably when using the two-day pulsing regime that Thomas McPherson Brown had used for Rheumatoid Arthritis.

The breakthrough came when Marshall introduced the use of an Angiotensin Receptor Blocker, Olmesartan (Benicar), which appeared to potentiate the antibiotics and help the immune system to fight the hidden bacteria.

There were enough people trying out his treatment and excitedly reporting positive results to make me think it was worth further investigation. After a lot more reading I decided that becoming a guinea-pig for the Marshall Protocol held less risk than the only alternative my endocrinologist could offer, that I should do nothing until I was bad enough (in his eyes!) to need steroids. There were no costs involved with the MP, because advice is freely given on the website, and the medications are prescribed by your own doctor.
That was four years ago, but I didn’t start the MP then. My nice-but-conservative endocrinologist was sympathetic when I showed him the MP research papers, but he wasn’t prepared to try such a new, untested treatment.

But he did agree that staying out of the sun would help my hypercalcaemia. He said I wasn’t his first sarc patient to report a terrible flare-up of symptoms after a sunny holiday. But he was surprised when I linked the beginnings of my terrible thirst (my worst symptom of hypercalcaemia) with the time I started taking cod liver oil capsules for arthritis. He hadn’t realised that cod liver oil is enormously high in vitamin D, but I’d been alerted to it on the MP website! He agreed to let me try two weeks of light restriction and vitamin D avoidance; if that didn’t bring my calcium level down, I would need steroids to save my kidneys. The two weeks did the trick and brought my calcium down to normal, and it’s remained normal ever since; I never took steroids. I also began to sleep properly again, and some of my cramps and pains got better.

I took the MP information to my GP, but he was worried about the high doses of Olmesartan (Benicar). He did agree to let me try minocycline on its own – “just to keep the old bat happy,” I suspect!

What happened when you started the MP? How did you react to the medications? How long did it take to note improvement? How bad did your herx get?

Starting the antibiotics without the Olmesartan is not ideal; there’s a risk of too strong an immunopathological response (fondly known as ‘herx’ to MP members). I had one false start, with a migraine herx that scared me. But I didn’t give up; the carrot of a pain-free life was dangling in front of this donkey’s nose.

My second attempt went better. The first few weeks on low-dose minocycline every other day were just AMAZING. My eyes began to heal, and other symptoms began to resolve. When I went back to my GP he took one look at my beaming face and said, “This guy must be on to something. I suppose you want the Olmesartan now? Well, it wouldn’t be the first time a drug that’s intended for one thing turns out to have a completely different use.” How thankful I am for his open-mindedness!

After about three months the mino on its own had ceased to have any effect. But as soon as I started the Olmesartan, and then re-introduced low dose mino, I began getting the immune response again. It was all so exactly and reassuringly as Marshall had predicted.

That was three and a half years ago. I was only teaching mornings, so when the fatigue hit, I was able to come home and take an afternoon nap. I was working with young children, so I wasn’t able to be as strict about light avoidance as the MP required in those days, but I still got better. Some people seem to be much more light-sensitive than I was.

Any regrets? None. Any bad points? Herx. Any of your symptoms can return as immunopathology for a while, sometimes for a few minutes, sometimes for months. But herx only brings out what’s there. If it’s something you didn’t know you had, you would find out about it in due time if you let the disease run its course, so you would get it anyway. You don’t escape it by not doing the MP.

What are your symptoms like now

Every symptom on that list has gone, apart from brief returns as herx, except for two major ones, ankle arthritis and eczema.

The arthritis is slowly, very slowly, improving. Last year we hired a wheelchair for our holiday; this year I only took a rollator, and was able to walk over a mile at a time with it. I walk round school without my stick, and can manage stairs much better. I no longer borrow a Shopmobility electric scooter to do my shopping, though I’m still leaning on the trolley when my ankle gets tired. Just recently I’ve begun standing for the hymns in church again for the first time in years.

The eczema comes and goes with the treatment; once I had a couple of months of scratch-free heaven for the first time in my life. But it came back with the next change of antibiotic combination, and now I have to adjust the antibiotic dosing very carefully to keep it tolerable (that’s the beauty of the MP – you can fine-tune it according to your individual response). I’m sure I’ll be eczema-free one day.

The end of my annual three months of misery with hay fever was an unexpected bonus, right from the first spring on the MP.

Last school year I was working almost full time and took on a lot of administrative responsibility. I couldn’t have done that before. I can play chess again, and read without having to go over the same paragraph two or three times, and – the most important of course – I can concentrate on my favourite TV murder mystery! My memory is beginning to come back, though that’s one of the slowest things to resolve, so my desk and my kitchen are still dotted with sticky notes.

Over the last decade or so I’d developed a serious phobia about big things overhead – I couldn’t even walk under a heavy chandelier. I felt it was another form of the mild Obsessive Compulsive Disorder that had plagued me from early childhood. It got progressively worse; the big things didn’t have to be directly overhead, and if I had to go near them I felt really nauseous.

The worst was a huge ’sculpture’ (for want of a better word) like a cross between a massive dunce’s cap and a half-furled umbrella, that hangs two floors high beside the stairwell near my endocrinologist’s clinic. I can’t avoid passing it to get there, though I always took a route that didn’t go directly underneath it. It got to the stage where I was slinking along the far side of the corridor with my hand up to my eyes like blinkers. I wouldn’t have been surprised if the ‘men in white coats’ had come to take me away to the psychiatric ward!

The improvement came fairly suddenly about eighteen months into the MP. The Christmas decorations went up in our mall, with a huge Santa sleigh and galloping reindeer hanging from the ceiling. I found I could go right underneath them – I couldn’t go anywhere near them the previous year. Hubby watched me in amazement. “Hey,” he said, “you’re not meant to be able to do that!”

The real test was the next appointment with my endocrinologist. I didn’t care about the blood tests – I wanted to see the dunce’s cap that I’d had nightmares about for two years! I was able to walk past it normally, and even stopped and studied the weird thing. Still wasn’t able to go underneath it yet, but such an improvement!

Two and a half years into the MP, I walked right underneath it and even looked up under it, and thought to myself, wow, that’s big – just the way normal people must do all the time. I’m convinced that the phobia was caused by bacterial infection of the brain, the MP dealt with it, and the worsening was herx. It makes me think that most mental illness is probably caused by bacteria.

How does you doctor feel about your improvements/recovery?

My GP’s a very wise and experienced guy, and while he’s delighted for me, he knows I’m only one success story. Nevertheless he recently agreed to take on a second MP patient, this time for ME/CFS.

My nice-but-conservative endocrinologist remains skeptical, but continues to see me about twice a year, because, as he puts it, he wants to see what happens next!

What was the hardest part about doing the MP?

Fatigue and eczema. And not being able to eat fresh Irish salmon!

But also… I look around at my friends, my family, and see my symptoms everywhere… symptoms that the MP is now curing for others, no matter what disease name they’re given… the frustration of not being able to help them because it takes so long to get new treatments recognised… watching a dear friend die of ME/CFS, because the Marshall breakthrough came too late for her… watching some of my own dear family developing symptoms that I know all too well, and knowing there’s no hope of them getting on to the MP until their diseases have progressed far enough to show up in tests and be given a name, because they don’t look ill.

Did you ever have any doubts about the MP?

Some, especially early on. It’s only natural, when a treatment is new and relatively untested. But what’s the choice? Let the disease run its course? Then buy a wheelchair, a coffin and shares in an oxygen company. Let Prednisone run its course, with all its side-effects? No thanks.

What advice would you give to people starting the MP?

Be very careful to follow the instructions. Make sure your prescribing doctor doesn’t try to “modify” the MP in any way. Post often on the MP website, because the MP moderators are the experts and can often spot trouble before it hits.

What lies ahead?

For me? I’m sixty going on sixteen. I believe my mobility is going to continue to improve. Life is good.

I have a dream… that one day I’ll go for long country walks again, and maybe even climb mountains again… well, little ones. But with a loving Heavenly Father watching over me, I can say like Charles Kingsley in Water Babies, “And then if my story is not true, something better is.”

It’s exciting being a part of history in the making, because the MP is not just a new treatment for sarc; it’s a new understanding on a molecular level of how the immune system and its invaders interact. It’s giving us new insights into chronic diseases and some of the so-called diseases of aging as well. It’s a breakthrough that must surely change the future of medicine the way Louis Pasteur’s confirmation of germ theory did in the nineteenth century.

But I’m not holding my breath for recognition by the medical world. One day perhaps there will be an ‘MP clinic’ in every surgery. Perhaps in my children’s lifetime, not mine.

Interviewer’s Note: this interview was conducted in written format. I sent Julia the questions, and she answered them in writing.

Interested in doing the Marshall Protocol yourself? Visit curemyth1.org and your questions will be answered free of charge by experienced patient advocates. (Th1 is a name currently given to diseases caused by L-form bacteria, hence the name cure my Th1)