strange observations

[marta]

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.

[annekat]

Wow, Marta. I consider that mold could be a factor in my case, but I definitely have WG and think of the mold as just one of many possible triggers, not something out there on its own that could have destroyed my septum and sinus bones. I can certainly understand your frustration and disappointment that these people are so easily dismissing what seems so obvious to you and that someone is making money off their misfortune and lack of awareness.

Other than that, I'm very impressed at what you are doing, planning what sound like a multi-faceted autoimmune disease treatment and healing center. Keep at it, and more power to you! :thumbsup: . You will of course let us know how it goes.

[Alias]

I did a search on Facebook pages related to mold exposure and spent a few minutes looking at several of them. I don't think I found the one you looked at, since I didn't see the posts you described. I did see lots of ads or links to sites promoting books, supplements, alternative medicine providers, home inspectors, direct requests for money from people wanting to finance their medical care.... I also see that mold toxicity is often the subject of personal injury litigation. Always the skeptic, I wouldn't rule out the idea that some of the people who seem so emotionally invested in their diagnosis have fallen victim to charlatan providers and/or attorneys who specialize in these kinds of cases. It's sad to think that the people you mentioned (whose symptoms DO sound exactly like WG) are dismissing the opportunity to get evaluated for WG because they have set out on this other path and are now defensive about investigating any other possibility. Hopefully some of them will look into the information you provided.

Good luck with your efforts on the healing centre!

[marta]

Pheuf. I knew you guys would get it.

I know we've had the discussion on here before about mold and I know a few people were pretty sure that was their trigger when I was more active on here. I was looking for some of those descriptions to send those ladies but couldn't find any. Regardless, if they read any of the personal Weggie stories, they would certainly see that they're on this path. Here's the Facebook page if you want to try and convince. I've pulled myself off it so I don't have access to those posts any more. It was too much to keep my brain from going back there to see if any of them called their docs, and seeing that they're still talking mold. https://www.facebook.com/groups/blackmoldsymptoms/

I'm reading a really cool book right now that I think many of us can relate to. It's called The Patient Will See You Now, by Eric Topol.... I'm only on Chapter 3 but I can see how this would be such a benefitial system for chronically ill patients. I'm going to see if we can implement something like this with our AI Centre ideas. Check the book out if you want to see some hope on the future of medicine, because I know we've all seen the not so sunny side of the medical system.

Thanks for the encouraging words, and absolutely, 100% you guys will know what comes out of this. You're the ones who propped me up when I had no strength to stand on my own.... you are my second family.

[mishb]

I can feel your frustration Marta :sad:

I also believe that mold was a trigger in my WG but I also had a few very stressful situations at the same time.

I think you have done the best you can for these people and if what Tom is saying is right, then none of them will want (or go to receive) an auto immune condition, because then they wouldn't be able to get a personal litigation claim through.

Hopefully if you got through to even one of them, then you have done an awesome job in your awareness campaign :biggrin1:

Don't let them worry you, I am just really interested to hear of your continued progress with your wellness centre

[Mas78]

Marta,
That is sad to think that the group didn't seem to want any information of what they could have for proper treatment. I would bet that someone will read your posts and pursue to see if they have WG.

I hope that you can get a center in your town up and running to help treat auto immune disorders, that will quite the achievement!

[Debbie C]

Marta,hopefully you were able to get thru to 1 and even if they are a "lurker" can take some of this info back to the other site and get people thinking. At least you tried. Maybe when they googled wg is was too much for them and they would rather believe its just from mold and can be healed in other ways.

You will have to let us know when your center is up and running.We can all come there for professional help.Its sounds like it will be great.

Take care and don't let these people get you down...you tried

[vdub]

'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
This is the guy I'd be upset about. Anyone offering "advise" for a small fee has potential to be a quack and scam taking money from desperate people. Terrible human quality that we see too often.

You can only do so much, Marta. You can point people in the right direction, but they may not want to take it. An interesting thought, tho.... Couldn't mold be tested for, ie, swab, grow, microscope? And, then, either yes or no.

I thought jasper was kind of smallish. Can it support the type center you are talking about?

[marta]

I know what you mean vdub.

Jasper is small in terms of population, but it has the infrastructure to see over 2 million tourists per year. We are looking at creating some extra health based infrastructure to make it a more holistic experience and then see what happens. I have all sorts of ideas on the go to make it the best destination for anyone looking to get a handle on this disease, and get some quality healing done in the process. No cure, just healing (maybe one day we can promise a cure ;)

I'm also thinking of creating an open source database of research papers, journal articles and the like that are autoimmune disease based so that we can start scouring the data to look for the common thread. That would be part of the concept and I would make it a small fee so that people who might be tapped out financially don't have to break themselves to get their research to be seen.

The article my doc and her colleagues wrote up based on the survey that I put together and most of you supported with your experience, has been denied by three journals so far. The Journal of Rheumatology's response was that despite being a good article, they receive over 1,000 submissions per month. Crazy. I asked Dr. Y what happens with the 985 or so per month that get rejected and she said they do what we're doing, continue trying to get published in other journals. Then I asked what happens if they don't get published, and she said that's when people generally give up. That blew my mind. So how much good research never sees the light of day - granted some is rejected for good reason, but not all 980 per month. Then there are the thesis that PhD's and Master's students write that never get out there. I think there's a wealth of info that needs to be part of our collective knowledge base. I want that to be part of our centre too.

I don't know if I mentioned this, but there is a fantastic book I'm currently reading called The Patient Will See You Now, written by Eric Topol. It's totally inspirational on the future of medicine and changing things from paternalistic top down to patient driven bottom up informational flow. Something I read yesterday that might help many on here:

Open Notes research project where all medical info and office visit notes are instantly available to the patient (the consumer who has payed for them, and healthcare is the only system where the consumer doesn't get to keep what they payed for.) It was such a success and is now permanently available at the three participating centres due to it's success: Geisenger in rural Pennsylvania, Harvourview in Seattle and Beth Israel Deaconess in Boston. Just in case any of you are going to those centres, or are considering them, these are the places where all your info is available to you instantly, and for ever, at no cost. Apparently with the new Medicare from Obamacare there is a program called the Blue Button initiative that is an experiment to advance the case for a fully transparent medical record and patient access (The Patient Will See You Now, page 129) You can get an iBlue Button app on your phone and have it analyze your medical data from the last three years. You have a right to it if you're on medicare and can get set up so that you have YOUR info with you no matter who you see. This can avoid duplications in diagnostics and keep docs in the loop that might not be otherwise. It will make you a more involved patient, who is healthier and more empowered because of the knowledge. You can also see if there are any mistakes in your files (often with meds and the like.) I like this so much that I am now trying to figure out a way to make it happen here in Canada.

Totally great book and worth a read. It's nice to know that most of us on this forum are informed, engaged, and participatory patients, unlike the Facebook page that I mentioned above. I am glad to be part of this crew. Grateful, and very lucky to be part of this crew.

[Debbie C]

No Marta,we are lucky YOU are part of this crew. That is a great idea about the medical info being available.I will have to get that book.Is it on Amazon, I'll check. Good luck on your venture up there,I know it will be great and maybe find the "common thread".

[vdub]

Then there are the thesis that PhD's and Master's students write that never get out there.
That never even occurred to me... At least, I never thought about it.... So, I went searching for my own thesis which was completed in 1981. I found it, its out there, but it was only at my graduate school and was only available as a reprint for cost. However, I went looking for my son's dissertation which was completed in 2000. It was widely available in .pdf form. Of course, his was much more interesting than mine. :-)

I also went searching for journal articles that I had written and were published in the late 80's, early 90's. Most of those are available as .pdf's. I also found that a dissertation that I was involved with in 2003 is available as .pdf's, too. So, I think its a matter of timing. I would guess most everything written after about 1995 is searchable and available. I can assure you that the dribble I've written was not very inspiring, so I was surprised to see any of it on-line.

Also, one of the first chapters of any dissertation or thesis is the "lit search". The literature search is to see what other information has been studied regarding the topic you are doing. In fact, the only reason I found my thesis was because it was in the lit search portion of an MIT graduate paper and it had been referenced. The lit search is done so that duplicative work isn't done and time/money wasted. Except in some circumstances where work is done to disprove on invalidate previous work.

[marta]

This is good info vdub. Thank you.

I will look into it. I just want to have a place to find anything new about autoimmune disease so that any interested super brain might find something that others have missed.

What inspired me was the story of Aaron Swartz, the founder of Reddit, and a scapegoat for political wrangling of a couple of nasty prosecutors. He hacked a college library and made it open to everyone, he was severely prosecuted for it, but he was operating on the premise that our collective knowledge and research belongs to everyone, not just the journals or academic institutions that published it. He ended up paying with his life, but because he made it available to everyone, a fourteen year old prodigy found something in the data and single handedly developed a new method for testing for pancreatic cancer that is more efficient, more timely, and less costly than anything before and is now saving countless lives.

I saw Aaron's story on the documentary 'The Internet's Own Boy' https://www.youtube.com/watch?v=vXr-2hwTk58 when I was in Hawaii last summer, and it so deeply affected me, I would start crying for no reason for days after watching it. He wrote the Guerilla Open Access Manifesto, and I so like everything it stands for and I think this is the way of discovery and forward movement - why haven't we seen a cure for cancer even thouth there are billions going to research? Because of proprietary information hoarding, and the constant need to make more money. Haven't they made enough money off the backs of the sick and weak? ( https://archive.org/stream/GuerillaOpenAccessManifesto/Goamjuly2008_djvu.txt)

This is our way out of this disease. I really feel it. We need to raise the awareness to a level where people understand the severity of the disease and have a will to change things. That's our first problem, and I have ideas for that too. I am penning a petition to try and get Autoimmune Disease to be classified by the World Health Organization as a disease group (the classification system that medical examiners use to mark Cause of Death on a Death Certificate.)The current classification system doesn't honour our battle and our last vote on this planet goes to another disease or event that ends up getting more funding and more awareness, while we continue to sit in the dark, underfunded, and misunderstood. My friend who just passed from Vasculitis had no mention of it on her death cert., I'm guessing Phil's probably didn't, nor did Al's or Christi's, or Jack's.

I'm not articulate or smart, but I am very stubborn and pushy (who would have thunk that these personality quirks would come in so handy one day,) so I'm going to keep pushing in any way I can until I see the result I want to see, or I see my grave (whichever comes first, and I better have Autoimmune Disease or Wegener's mentioned on my death certificate, because unless I die of an accident, I'm sure WG will have a big part to do with my passing, as it did with all the people I mentioned above.)

I'll let you know when I put the petition out so that you can all add your John Hancock to it.

[vdub]

I would sign that!

[Debbie C]

That's really interesting Marta, I wonder where or who you would talk to about that in the states