The last couple of months have been a period of enormous learning on my part. A few months ago, I thought that I was cured – and then I was encouraged to ‘play around’ with the 5-available antibiotics in different combinations in order to induce herx. I was very successful – I herxed right up to my eyeballs and pretty badly too. This means, of course, that I am not cured and that I probably still have a long way to go.

I have to say that I was pretty disappointed with this but the last thing I wanted to do is to fool myself with false accomplishment: so I continued.

But, I decided to give the whole protocol a break. I felt psychologically and physically drained and after 18-months on the protocol, I have to admit that I am pretty sick of it.

It took about 5-days for the cough to disappear. After that, my sinuses dried up, the aches and pains subsided, the shortness of breath disappeared and, strangely enough, my dark and black moods lightened considerably. I had much more energy. The herx lifted when the treatment stopped.

The other thing that happened was that the 4-DVDs of the Chicago conference arrived. I watched 12-hours of talks and presentations given by researchers/scientists, doctors, a whole host of different sufferers and conference organisers. It was riveting. I learned so much and understood so much. Understanding the mechanism of this disease and the mechanism of the solution is very liberating and empowering.

What happened next was that I started to have a very serious think about my own situation. I was feeling very good – better than I have ever remember feeling. The question became…was I happy with this? I had come so far in beating this disease – was I satisfied with my progress and was I ready to quit and start putting my life back together? I was/am on a diet to finally shed the 12kgs that I went up while on Prednisone – because I finally had the strength to do something about it. Trevor then said something that hit home. He informed me that I really didn’t know what feeling well was…that my perception of well being is skewed by decades of illness. He said that it was not a case of getting back to normal…“I am going somewhere I have never been before and it is surreal!”

That is when I decided to resume the protocol after only a week’s break. I would not be doing myself any favours by stopping (other than prove to myself that the protocol was working and to get a feel of how far I had come in my progress). I might as well continue and beat this disease completely.

How will I know when I am done? I will know that I am done when I feel well; when I can play with any combination of the Marshall Protocol antibiotics and not get a herxheimer reaction. I will also use my psoriasis as a gauge…when it is completely gone (it is now gone to 85%) I will also know that I am done. I will also keep an eye on my D-metabolites.

I immediately started the medication again and…welcome back herx. Herx is a real slap in your face when you have had a bit of time feeling well – there is such a contrast. One of the interesting things that I had not thought about earlier is that herx is not just limited to physical manifestations…the ‘fluey feeling; the pains; the shortness of breath; the fatigue; the cough; the overactive sinuses – there are also manifestations of mild neuroses and mild psychoses. I find that I have some very black and dark moods, not just feeling low. I have caught myself imagining personal tragedies and feeing terrible; I have caught myself becoming very irritated over things that would not normally bother me; I have times when I am extremely intolerant and react aggressively (verbally, not physically). I have said things to people (not just immediate family) that I sincerely regret the next day. All of these behaviours are the opposite of how I would normally describe myself. Until Trevor told me that these were fairly typical herxheimer reactions, I thought that I was experiencing some mental scarring from being so ill for so long. The confirmation came, of course, with the great feeling that I had when I took a break from the medications.

My doctor friend was not at all happy when I asked him for new prescriptions for new medications. He still definitely has a foot in the sceptical camp and he simply couldn’t understand why I would want to continue when I was feeling well.

I tried very hard to explain it to him, but he obviously didn’t get it. I explained to him that my goal is beating the disease and not just feeling well. He asked me why I bother as this disease is likely to go away on its own. To this I replied that a recent Access Study carried out by the American National Institute of Health showed that there has not been one documented case of spontaneous remission – and that the reason that most doctors treating sarcoidosis think that they have anecdotal evidence to the contrary is that nobody does any long term follow-ups of those that are declared in remission. There are several people on the Marshall Protocol that have been in remission up to 10-years, only to have the disease re-appear in a different form, often far worse (something that doctors say is next to impossible). This is why we are keeping a very close eye on Helena, my wife, who has been in remission for a number of years.

She may be active, fit and outwardly well, but she still has a number of nagging symptoms that are problematic enough to make her realise that her disease is bubbling somewhere under the surface. She has two reasons for not starting the protocol…the first is financial – the medications are heinously expensive; and secondly she fears that having two people in one family herxing at the same time would be unbearable! I’ll have to hurry up and kick this so that she can have a go. We are both in the process of arranging to have our D-metabolites tested. 

As I said earlier, my doctor friend is still very sceptical and will be until some papers get published in the main-stream journals. I had to explain to him that I have a semi-medical degree which helps me understand a lot of the science behind the protocol. But the big thing is that I have spent some considerable time investigating and reading up on Sarcoidosis. I am the expert. I am what is known as an expert patient. It is in my interest to know as much as I can about my affliction and I only have to become an expert in one disease – doctors need, in theory, to be experts in all diseases.

Granted, the sheer quantity of information available today can mislead a lot of people. In order not to be misled by the screeds of misinformation, pseudo-science and snake oil peddlers out there; a genuine expert patient needs to have significant information evaluation skills – to sort the crap out from the gold. I believe that I have those skills.

I am convinced that the MP is genuine and, for me, it has been proven beyond any doubt… and then some. Given this, and the fact that the medication is completely harmless and that all the alternatives are extremely toxic – my doctor friend was satisfied that he was doing me no harm and wrote me out a new prescription…phew!!

I am hoping to distribute the DVDs amongst doctors. It is, however, going to be a big ask to get them to sit down and view it. I am hoping that disk one is going to be sufficiently interesting to them to hold their attention for the entire conference.

One particularly interesting development gleaned from the DVDs is the fact that there have been far more cases with multiple people in one family suffering at the same time – this should be statistically impossible. Researchers are beginning to change their minds over a genetic susceptibility – i.e. anybody exposed to the infection may be able to catch it.

This has caused us to look very closely at our children. Maybe it would be wise to get their d-metabolites done too.

Despite the fact that I say that I am feeling rough, please note that I am feeling far better than I was when I was ill prior to starting the MP. I was losing the ability to move at all.

Stay tuned!