Stephen Askew
44
Male
My story began in 2014 when I had an x-ray on my chest (to check my heart) as I had been getting palpitations and light-headedness. No issues found with my heart, but they found lots of spots on my lungs. After a highly anxious time thinking I had lung cancer, I finally heard the word Sarcoidosis for the first time from my GP. It took a further 3 months to get into a lung specialist who confirmed 99% it was Sarcoid of the lungs. He did say I would need a lung biopsy to confirm, but he said it was clear cut and the risks outweighed the benefits. I also did a TB test, as I was told it looks very similar, but that was negative. I also completed cardiac echoes and did 24hrs halters to check for cardiac involvement, but that was negative as well. I must say I was given very little information at this stage except that it was mild and it should just go away on its own. No treatment was required at this stage as again the risks outweighed the benefits. This really did provide me a lot of relief thinking it would just go away. At this stage, I was asymptomatic.
However, this was just the beginning of my story with Sarcoidosis. So, a year passed quickly (now 2015) and I headed back to do all my x-rays and blood tests, etc., for the specialist. This time he said it had gotten worse and my lung function had not improved. Still, I felt OK and was not symptomatic, so no treatment was given again. My anxiety levels had started to increase. I must include here that my second child (a boy this time) was born in this year to add to the dynamics of life.
Come around one year later to 2016, and I head back to do all my x-rays and blood tests, etc., for the specialist. Again, he said it had gotten worse, and my lung function had not improved. Still, I felt OK and was not symptomatic, so no treatment was given again. Anxiety levels rising!
Come around one year later to 2017, and I head back to do all my x-rays and blood tests, etc., for the specialist. Once more, he said it had gotten even worse, and my lung function had not improved. Still, I felt OK and was not symptomatic, so no treatment was given again. Anxiety starting to become a problem, and I seek help.
It was during 2017 to 2018 that my lungs started to crackle, and I had shortness of breath. This was getting scary now, and my anxiety was through the roof.
I should add in here that with my background in Engineering and research, I couldn't just sit by, so I had read a ton of papers about Sarcoidosis. My biggest thing was why did it look like TB, but yet my specialist kept saying they didn't know the etiology of the disease. I just was thinking this thing has got to be pathogenic. That's when I discovered Lida Mattman and her amazing research. Her paper on mycobacterium really wowed me, and her paper on "Growth of acid-fast L forms from the blood of patients with sarcoidosis." Blood from 20 patients with active sarcoidosis and from 20 controls was cultured using methods favorable for the growth of acid-fast cell wall deficient forms of bacteria (CWDF). Isolates were further characterized by indirect fluorescent antibody analysis using a monoclonal antibody highly reactive with M tuberculosis. CWDF were grown from the blood of 19 of 20 subjects with sarcoidosis. All isolates stained positively with the monoclonal antibody and with a modified Kinyoun stain. No organisms were grown from the blood of controls.
This paper absolutely stunned me because then you read all the follow-up papers who could not get the same results because they were using incorrect staining techniques.
Then I read Branko Celler's case study and was stunned again. I sent through a blood sample to John Aitken at Otakaro Pathways, and they found high levels of CWDF of bacteria in my blood. I spoke to John and sent papers through about researchers who had dismissed claims of mycobacterium in the blood of sarcoid patients, and he said they were using incorrect staining methods. It is a very difficult and highly fragile process to culture CWDF of bacteria. This again just floored me as researchers are changing the focus of this insidious disease.
Armed with those results, I started looking for who treats mycobacterium for Sarcoidosis (which is basically no one). My current specialist (at the time of discovery) said even though it could be bacterial causation, he would still only treat with the approved treatment of steroids, which is crazy as that is not even an approved treatment. It is just what the majority do.
On a sarcoidosis forum, I became friends with some people who had success on the Marshall Protocol (Trevor Marshall had said long ago Sarc was caused by mycobacterium), and my new specialist in Brisbane said I could give it a go before starting normal treatments.
By this stage, it is December 2019, and my latest lung tests have shown further decline, and they want to treat with steroids. So, I started the Marshall Protocol but with a group called Chronic Illness Recovery who used a similar technique but not as crazy as I found some on the MP site. So, in April 2020, whilst COVID was going crazy around the world, I started my treatment. The treatment required having 20mg of Olmetec (a BP med) every 6 hrs. After a few months of ramping up to this, I started ramping up to 100mg of Minocycline every 2nd day. This is when the herx started (bacterial die-off), and what they said would happen started. I started to herx where it felt like I was getting worse. Then I included Clindamycin 100mg every 2nd day. After some further herxing, my lungs seemed to really clear up, and I felt great. Then after a few months (probably Dec 2020), I started including Zithromax 10mg every 10 days. I did this program until May 2022 when I went to my PFT lung tests, and they had improved significantly. So I decided to take a break. It is now June 2023, and my lungs are still good, but I may need to do the program again if they decline.
In summary, I had to do everything myself to chase down the cause and treatment for this disease. The medical system is great for emergency care if you break something or have a heart attack but is absolutely woeful when it comes to chronic disease. After all the research I have done, it seems mycobacterium is the cause of many issues. They are looking at MAP for the causation of Crohn's disease. If I had more money, I would put vast research money into this area. People like John Aitken at Okataro are doing groundbreaking work and need to be heard.