I have to share this story with this crew of Weggies because you, I'm sure, will understand the gamut of emotions I went through when in the middle of this.
Just to give a quick backgrounder. I am in the process of early planning on creating an autoimmune disease healing centre in our town. I want to populate the options for people's healing vacations so that they can have access to MD's, Naturopaths, Financial planners, nutritionists, physiotherapists, and other peripheral health options. I was looking to contact a functional medicine doctor, and a complete stranger on an unrelated post steered me to a Facebook page that would have a list of functional medicine docs. It was a Black Mold Symptoms page. So I ask to join, it's a closed group, and get accepted, and the very first post I read once I'm on there was a lady (mom of two) who is asking for help from the group and she goes on to describe her symptoms. She is describing Wegener's to a T. I read it and re-read it, and can't believe what I'm reading. She has it all including a 'nasal obstruction' and a deviated septum. So I read a little further down the thread to see what kind of advice she is getting and just a little ways down is a second lady who is describing HER symptoms, and guess what.... she too is describing WG to a T. She even has the nasal perforations, and has had her ENT take out a bunch of her septum.... to remove mold.
I'm totally blown away at this point. You don't get to run into Weggies outside of Weggie type forums. A little further down there is a post from a man who talks about his friend Pat's experience and Pat, in my estimation has Wegener's but has been treated for fungal growth in their sinuses. Pat had all the classic symptoms as well, but Pat lost the vision in one eye and a big chunk of their (not sure if Pat's male or female) sinuses. Pat's been symptom free for 7 years, so the gentleman was quite adamant that I am wrong and the girl who started the thread has a fungal infection in her sinuses and should go and get them all cut out like Pat.
I tried so hard to direct these people to information on WG. I gave them a link to this forum, to Mayo clinic, to all the Weggie stories on my Weggie blog. I told them to ask their docs if they've ruled out Wegener's in their efforts to get a diagnosis. I said that if they have ruled it out and it's not it, then great, but if they haven't and haven't thought about it, the change in doctor patient interaction would change drastically as soon as they point it out.
I honestly think that I was brought to that page to help someone. I couldn't believe that I was reading three undiagnosed Weggie stories on the same thread. I think there were more, but I'm sticking with the three.
I had to remove myself from the site though because it was super frustrating reading people trying to discredit my comments and pushing the mold thing. Then I saw a link someone had put on for a 'mold specialist' a website where the guy looks like a doctor, but wants people to sign up for his site for $19.95/month so that you can get the latest info. When you click to 'symptoms' on his website, all of the symptoms are those of autoimmune diseases but there is not a single mention of autoimmune disease. Mold is a known trigger for many people, but this guy is choosing to keep that info to himself so he can get $20 a month from desperate people. It just made me sick to my stomach... and then all the 'followers' on that page pushing back so hard when they hear something other than 'mold' might be the cause of the symptoms. It was super frustrating, but I hope that at least one person on there asks their doctors about WG and hopefully saves themselves, and then they can convince the other sheep. I told them there aren't many things other than a bad cocaine habit and Wegener's Granulomatosis that will eat away your sinus bones. Docs should know that, but as we ALL have seen, it's not the norm but the exception.
There. I shared this with the one group of people who would understand how I feel about this. We all want to help when we someone going through the same pile of crap we went through, and it's hard when you know you can help and people aren't interested in receiving that help.
Peace and good health to you all. If you want to go to the Black Mold page on Facebook, you can try and convince these folks that they're barking up the wrong tree in their efforts to get help.
Bookmarks