I am now completing my second course of prednisone which also made me feel a lot better initially, but I am now suffering a second relapse.

After reading the above websites, I now have a much greater understanding of how the Sarcoidosis works and I am now trialling a new but controversial treatment protocol devised by Trevor Marshall PhD.

This protocol works on the (in my mind fairly well proven and documented) assumption that Sarcoidosis is caused by an infection of a very slow growing cell-wall deficient bacteria in those people who have a genetically predisposed susceptibility to it. According to his research, because the infection is so slow growing, sufferers have probably had the sarcoid far longer than they at first believed.

His website has helped me identify that I have been suffering with the following symptoms:

• Shortness of breath and difficulties in breathing
• A persistent dry cough
• Severe fatigue
• Short-term intermittent memory loss
• Muscle and joint pain
• Irritability
• Kidney stones
• High blood pressure
• Insomnia and sleep disturbance
• Hard lumps on the neck
• Difficulties in concentration

I have been able to trace the onset of my high blood pressure, insomnia and kidney stones simultaneously to around June 1987 but it has only been the last three years that my body has become overwhelmed by the symptoms.

The treatment protocol involves low (but increasing from 25mg every second day to 200mg every second day) doses of antibiotics (Minocycline followed by Azithromyacin) for about a year.

As the bacteria start to die they release an endotoxin causing a reaction called the Jarisch-Herxheimer shock or “Herx” for short. The symptoms of the herx are hard to distinguish from the actual Sarcoidosis in that it feels if all your symptoms are getting worse at once. It also makes you feel as if you have the ‘flu.

It is easy to tell if it is herx as if you discontinue the antibiotics for a few days, the herx disappears completely, but returns once you return to the treatment. Herx is therefore a good sign, even if you are feeling terrible, as it is a sign that the infection causing the Sarcoidosis is dying off.

To counter the effects of the herx, you take a medicine developed for high blood pressure called Olmesartan (marketed in the USA as Benicar and in the Europe as Olmetec). Olmesartan is an ARB (an Angio-Tensin Receptor Blocker) that should be taken at 40mg every 8-hours (three times higher than the dose recommended for high blood pressure).

I have not tried it yet as my consignment has not yet arrived in NZ (it takes about 10-days to import) but I have tried another ARB called Candesartan which (according to the Marshall protocol) doesn’t work nearly as well. The candesartan has had a dramatic effect on the quality of my sleep and I have slept better than I have in 16-years (which alone is worth the expense) but has not had any real effect on the rest of my herx symptoms – I am really looking forward to the Olmesartan!!

I am now very hopeful that I am going to be rid of this disease even though I know the road to getting there is going to be long and very tough.

Prednisone is not a cure: in fact, it can even make things worse and the side-effects are definitely not worth the very short-lived time where you feel better. It is a horrible drug!!

If you are having trouble in finding a GP or a Specialist that is willing to let you try the protocol, please don’t hesitate to contact me and we can talk through it.