Sue's Story

As a child I had a: Tonsillectomy and Appendectomy at the time I had what they thought was diabetes but this disappeared.

Family History

My Mother’s side of the family has been hit with many health problems e.g.


Rheumatoid Arthritis – several relatives affected.

Kidney problems (my Auntie that had TB has had 1/2 of her Kidney removed).

Cirrhosis of the liver (my Mothers sister has had a lung transplant but unfortunately is far from well) also she has Osteoporosis.

Her daughter's daughter has Reynard’s Disease.

My Mother died of Alzheimer’s disease.

My Health Problems

Below is a brief history of my adult life and a list of conditions that I have sought or rather tried to seek help for — since arriving in Australia (1978): The conditions listed is what I was told I was suffering from by the medical experts. Now I tend to think and am 99% sure that these symptoms are a result of Sarcoidosis.

I’d been unwell for a while and I’m sure my doctors basically thought I was a hypochondriac. One day in 1985 I went to a picnic on a beautiful sunny day in Sydney Australia. I shivered all day and felt very unwell. The next day I could not get out of bed my whole body had seized up. The pain and fatigue was enormous. I was desperate for help and no doctors seemed to be able to help me. Over the next few days lumps started appearing on my shins. In desperation I went to see a Naturopath who practiced iridology. He knew something was wrong but couldn't tell me what. Trying to get back to the car was one of the most difficult and painful things I've done. A few days later I visited another GP who sent for me for a chest X-ray. This floored me why a chest X-ray I thought. Anyway it was from this that he confided with another GP and came back with the verdict that they thought I had Sarcoidosis. Sarcoid WHAT I said.

From that day my life had changed forever.

I was sent to a cardiologist who eventually put me on prednisone. Only to find out years later that this was a big mistake. Thankfully this drug did not suit me and I fell into massive depression and had to be weaned of it.

Months later I was told that I was in remission. OK. 

From that moment on something deep inside told me that this was not true. Although to an extent I did get better and even took up running and was a keep fit fanatic. Over the years I gradually became sicker and sicker and was placed under the care of a pain clinic. I've had numerous visits to different doctors and specialists. (I'd be a rich person today if my health had been OK

Not one Dr or Specialist linked this to Sarcoidosis just all these different diagnoses.

My goodness how can I convey all these problems to my friends. Everyone will think I'm raving mad. So over the years I basically have not. A few know that something was wrong but as I look so well I know that they do not really have any understanding of my problems. Anyway let's move on.

One incident that I can remember that preceded a lot of my health problems was when I had a strange episode where my skin was burning and all peeled of my body I was told this was toxic shock syndrome. From memory this was about 1982.

Eventually I was diagnosed with Sarcoidosis in 1985 (my Auntie had TB as a child we used to visit her at the TB hospital. My Grandfather her Father died of TB before I was born. I often wonder if there is any significance here) – Prednisone was prescribed and as I realize this now this was a palliative step. The arthritis was unbelievably painful and the fatigue unbearable.

Then in 1989 I was diagnosed with Breast Cancer. I had a partial mastectomy and radiotherapy. See my Breast Cancer Story at

Next came the back problems and I had a Laminectomy L5-SI

Next a Frozen shoulder (adhesive capsulitis) Op one shoulder but had in both. My husband also developed frozen shoulders he was told by a therapist that is appears that if one partner has it often the other develops also and a school of thought is that it is caused by a virus.

Listed were problems I have encountered over the last 20 + years

HPV - Human Papillomavirus virus

Monoclonal Gammopathy of uncertain significance (MGUS)


Trochanteric Bursitis

Restless Leg Syndrome

Active Arthritis


Chronic Fatigue Syndrome


Shin Splints

Pain big toes Hallux Rigidus



Pain joints, muscles etc

Week arms hard to hold up.


Chronic constipation

Memory problems (my Mother died from Alzheimer’s)

Speech - sometimes I have trouble getting my words out.

Very loud ringing in my ears -Tinnitus

Headaches — that do not react to pain killers

Sinusitis, Post nasal drip

Mild asthma

Cough that drives me mad


Stringy saliva some mornings worse than others

Metallic type taste in mouth

Hair stopped growing in the armpits (not that I'm complaining about this)

Balance problems, bumping into walls.

Lipoma in right armpit, now one under right rib cage.


Skin problems (rashes that emit heat and itch unbelievably) Eventually the skin has a leather feel to it and slowly as the itching stops it gradually disappears.

Swallowing problems particularly at night.

Breathing became noticeably strange I felt like my lungs were not expelling all the air. Lying on my side helped immensely. Some nights I could hear a strange noise almost like a gentle rattle. Brian my partner said that my breathing sounded like a gurgling sound when I was a sleep

2009 diagnosed with celiac disease.



Chronic constipation

Kidney problems

Dry eyes

Neuro and Central Nervous System Sarcoidosis

Iodine deficient.

About 2009 I became so desperate as my health seemed to be deteriorating I started searching on the internet for solutions. I came across a gentleman called Trevor Marshall I emailed Trevor and nearly instantly he sent a reply. You need to find a Dr who can help you with your Sarcoidosis. 

Hum mm I've been looking since the 1980's nearly 25 years. Where do I find one I asked. I am eternally grateful for Trevor's assistance as he pointed me in the direction of a great Dr in Sydney who is still helping me today.

In Australia we do not have Sarcoidosis clinics and hardly any GP's or Specialists really know how to treat this disease and few even understand the complexity of it.

This disease masquerades in so many ways. Just look at my list above. The text books really have it all wrong. Just jump on the forums and listen to people and you will see what I mean. 

My one wish is that the medical world would listen and take notice from their Patients. they could learn a lot from us.

Anyway back to my new GP. I started pulsed Antibiotic therapy known as Inflammation Therapy 

The Marshall Protocol® Knowledge Base

and learnt very quickly about herxing or the Herxheimer Reaction

30 Sep 2011
This phenomenon is known as the Jarisch-Herxheimer Reaction (JHR) and is often referred to informally as Herx. JHR is believed to be caused when injured or dead bacteria release their endotoxins into blood and tissues ...
09 Dec 2011
Some health care professionals believe that a Herxheimer reaction can help to confirm that the Bb organism is present in the body by the probability that a bacteria die-off is causing the herx. If the die-off coincides with ...
20 Sep 2011
But when your goal is to treat an infectious agent that underlies your Fibromyalgia and Chronic Fatigue, feeling worse before feeling better is a good, even healthy, thing. Feeling worse the Herxheimer Reaction is a sign you ...
24 Oct 2011
Since antibiotic resistance is very uncommon in Borreliae, a very slow increasing of the antibiotic dosage should be done, to keep the “herx” within safe bounds. Be advised that antibiotic therapy often causes new lesions ...

I have come a long way since starting this therapy and several things have been resolved and I've made good advances. However I have had this disease for so many years that I truly believe that I probably will never be 100% the bacteria has taken such a hold on my body. The fatigue and arthritic pain is the worse.

In conjunction with the inflammation Therapy I have just started low dose naltrexone (an 2012) and this link

So I'll keep you posted as this story is

to be continued.............

Currently on Permax, Minocycline (pulsed antibiotics - have taken clindamycin), Anti-depressants, Celebrex, Pariot, Nascent Iodine.

Sarcoidosis Information

R U Sick and Tired of Feeling so Sick and Tired?

Tired of people not Understanding your Condition?

So am I. Sick of it, really.

Sarc and other autoimmune disorders.

Let's get this Issue a Little closer to being Understood!