I commend you for your pursuit of trying to connect the dots, I think this curiosity on our own behalf is very important. I am in a similar space and there seems to be no rhyme or reason to symptoms/flares etc.
More recently I have been studying the role of the microbiome on health, particularly relating to gut dysbiosis and immunity. I recently did a stool test called GI Map, yes gross but very informative that shows exactly what bacteria (good/bad), viruses, parasites/fungi etc. may be in the GI tract or traces from past infections etc.
Turns out I have higher than usual strep and staph in my GI tract so am investigating this avenue further. I'll be going to my Dr. this Friday who will likely think I am bonkers for bringing this to him but will ask to see if these bad bacteria might be seeping into my bloodstream via a leaky gut lining (low Secretory IGa levels from this test point to issues with my gut lining as a defensive layer that needs to be repaired, and is a long process per my naturopath). Again, no idea if this is even relevant just another avenue to explore.
This is such a great forum and so helpful to me emotionally and mentally on this stressful path, so thank you all!!
@rosi75 ,
Interesting thoughts, particularly the mention of strep in the GI tract caught my eye. Without telling the whole tale in 3 part harmony, just over a year ago I came down with a massive infection from streptococcus constellatus that resulted in a 77 day hospital stay because of the infection causing heart/kidney and other failures along with a month of being in a coma, 5 units of blood in 24 hours and enough drain tubes to boggle the mind. It has taken a year to get back to somewhat what I was. The team of doctors said there was absolutely no connection with PMR, that I was just one of the unlucky 1 in 500,000 people that has this particular type of strep escape the GI tract and tries to kill. During all this the prednisone was boosted up to keep the PMR at bay while the main battle was fought.
Your thoughts are very interesting although I have my doubts that it is connected to PMR. However, who's to say? If it is a possible link, it's certainly worth pursuing as I wouldn't wish my experience on anyone.