I have been putting all my time into researching about my recent dx of sarcoidosis. As many of you remember, I have been ill for many years now, got many dx's, including rheumatoid arthritis (ra) and saw more dr's than I can count.
After a recent hospital stay, where they also found two pulmonary embolisms (pe's) and three deep vein thrombosis (dvt's) and a heart condition called prolonged QT. A cat scan in the hospital showed nodules growing in my chest, it is literally full of these growths. A mediastinal biopsy showed it to be sarcoidosis.
Sarc for short, is most commonly called an auto-immune disease. However, they do know that it is caused from a pathogen and that's what starts the autoimmune process. Since they thought I had some sort of auto immune (ai) disease all alone, like ra, I ran the gamut of drugs for ai diseases.
It wasn't until just before I was hospitalized and I stopped all my medications that the nodules showed up enough to be diagnosed as the sarc. Sarcoidosis causes your lmph system to go haywire and cause nodules to grow where they shouldn't. Most of the time its in the lungs. A lot of people will take some steroids and be done with it. Than they are people like me, who have a terrible systemic case of it.
The list of symptoms I have from the sarc is extensive but to give you an idea-5 miscarriages, joint swelling and extreme pain, fatigue like you can't even imagine, light sensitive, migraines, did I mention PAIN, shortness of breath, I could go on and on. Suffice it to say, it can be very debilitating.
Ok, so now we know what it is-off to the pulmonologist to figure out how to treat it. He says I have already been on all the drugs the fda approves to treat it-he called the University of Michigan and the Henry Ford hospitals and they had no idea what to do with me. My rheumatologist said she uses humira, which is a biological ra drug, off label to treat it so I start back on that.
The only clinical trials going on now are using the biological drugs like enbrel, humira and remicaid. I was previously on humira for over a year and it only helped minimally to suppress it. So, that leaves me with notta!
Some dr's are using an antibiotic called minocin to treat it. In fact there is a theory or two that a lot of auto immune diseases are caused by pathogens and some people with sarcoidosis and ra and such and seeing improvement in their diseases.
So, I have been researching this theory intensely. I think I am going to see if I can find a dr who is familiar with the Marshall protocol. Here is the web site, it has a lot of info and claims it can help with cfs, fibro, and a host of ai diseases http://www.marshallprotocol.com/category1/.
The general gist is opposite of current thinking. Right now, they try to suppress our immune systems thinking they have gone haywire and are attacking our own bodies. The Marshall protocol and some other researchers believe that pathogens are responsible for this immune system haywire. So, instead of suppressing the immune system, they give you a drug that boosts your immune system then systematically adds in different antibiotics to kill off these pathogens. As these pathogens die off, they release toxins and can make you sicker. Its a long, hard process, the disease should be in remission in 12-18 months or so but it may take many years to kill all the pathogens in your body.
Its a complicated process involving the removal of vit D from your diet and avoiding the sun and bright lights. Its just a protocol, meaning it has not even been studied in clinical trials yet. Its hard to find a dr familiar enough with it to treat me. I am still looking in fact.
Its a very hard decision to make as you really have to commit to it. However, nothing else has worked so I am really thinking about it. A lot of it revolves around vit D, which in its active form is actually a powerful steroid, so I am waiting on some blood test results to see if they match what the study says.
My head is swimming with all the information and different opinions. Its so hard to know what to do. I have been feeling a little bit better, my pain levels are down but I still have a lot of swelling and I am no where near good or normal.
So, that's the latest news with me. If anyone happens to be familiar with the MP, please speak up! 
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Taking it one day at a time.....
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