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Hello everyone!
Hope everyone is doing well....welcome to all the newbies I have missed!
Just an update ~ marathon training is going quite well....I have 58 days until race day! Yikes!
I'm happy to report I ran a full 20 miles on Saturday with no bathroom issues. Of course, once again I have modified my diet pretty extreme, cut back on fruit, more rice, lean chicken, and potatoes. I miss those home grown veggies, but when I indulge I always end up regretting it. I'm still not at a point where I can tolerate much fiber at all.
It's a sacrifice I am willing to make if it means I'm feeling good and able to race like I want/hope to!
Tex, I'm curious about something....there is talk in my office building where I work that there *may* be black mold in the building. No proof, just suspicion. It's a very old, dusty, dirty, out of date office building in a downtown setting.
I have a co-worker who became ill at almost the exact same time my MC kicked in last year, and she is now considered legally blind. The only diagnosis she has gotten is that it's 'Azoor", and that she has anti-retinal antibodies present in her blood. No cure, no improvement.....just a gradual progression of vision, which may lead to total blindness eventually. As you can imagine this has been a horrifying event for her.
Since she and I are friends, we have talked many times about how odd it is that we both got sick at the exact same time. It certainly does make us wonder if there is any connection between the two?
In any event, I could be chasing a pipe dream hoping to find a reason for her illness (mine too I guess!) and I wanted to run my thoughts by you.
Thanks!
Love,
Jill
Update/Black mold question
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jillian357
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Hi Jill,
Hmmmmm. That's a very disturbing coincidence, to say the least.
Did your friend have a history of migraines with auras? Or a history of seeing scotomas or photopsias? The reason I ask, is because that is the way that acute zonal occult outer retinopathy, (AZOOR), usually presents. Photopsia is the presence of perceived flashes of light, most commonly associated with posterior vitreous detachment, migraine with aura, migraine aura without headache, (known as an acephalgic migraine), retinal break or detachment, etc. Scotomas are dark spots, or displays of flashing light patterns, (scintillating scotomas), that tend to start somewhere near the center of vision, and slowly expand outward in a circular or oval pattern, (though in some cases they can be all sorts of shapes), until they pass out of the field of vision. They usually last about 20 to 30 minutes. In a classic migraine, they will be followed by an intense headache, but it's possible to have scotomas entirely without a headache. (I have experienced scintillating scotomas myself, always without a headache). If you Google the word "scotoma", or "scintillating scotoma" you can view some video representations of what these visual events look like. My point is, if her "condition" did not begin this way, then I question the diagnosis.
http://www.pubmedcentral.nih.gov/articl ... id=1772472
Another possibly could be a form of Chronic Inflammatory Demyelinating Polyneuropathy, (CIDP), but it's difficult to pin down, since symptoms can be unique to the individual, sometimes.
http://en.wikipedia.org/wiki/Chronic_in ... neuropathy
If the eyes are a target of the disease, multiple sclerosis can be connected, if the disease is not properly treated. Do you know if your friend had an MRI that might have shown the white matter lesions shown in this article?
http://www.rcophth.ac.uk/docs/members/f ... ring03.pdf
Here's a case study of a 34 year old woman, with persistent visual defects due to chronic exposure to toxic molds, who was diagnosed and successfully treated:
http://www.ncbi.nlm.nih.gov/sites/entre ... 920306[uid]
You might print that article out to show to your friend's doctors.
As to whether or not either of your cases might be connected to black mold, is the 64 dollar question, (does that reference to "the 64 dollar question" date me, or what - it refers back to a TV show from the late 1950s, I believe. LOL). Unfortunately, a lot of the sites discussing mold, are selling "natural remedies", so one never knows how much credence to allow for what they are saying. Here's an article that doesn't appear to be selling anything, with a general discussion of the hazards of exposure to fungus. A connection with Crohn's disease is mentioned, and many other diseases, as well.
http://www.mold-survivor.com/assoc.illness.html
Certain molds create their own specific types of mycotoxins, which can have various types of very adverse health effects, (some of which are mentioned in that article). These mycotoxins are sometimes found in wheat, corn, and other grains, grown under stressed conditions. Fortunately, most State Departments of Agriculture, monitor the levels of the most important mycotoxins, in years when they might be a problem, and they do a pretty decent job of keeping them out of the food chain. One does not have to eat food containing these mycotoxins, however, in order to be affected. Inhaling the spores of many/most types of mold can also cause very serious health issues. Not just allergy issues, but serious stuff, such as a fungus developing in the lungs, or somewhere else in the body. There is a lot that we don't know about fungi, and the mycotoxins that they produce.
I can't find any references in the literature to a connection between mold exposure and MC, but that does not mean that a link does not exist, because many varied types of triggers have already been identified. So little is actually known about the disease, that the jury is still out on many, many aspects of it.
It's great to hear that your training is coming along so well. Thanks for the update, and don't forget to keep us informed.
Love,
Tex
Hmmmmm. That's a very disturbing coincidence, to say the least.
Did your friend have a history of migraines with auras? Or a history of seeing scotomas or photopsias? The reason I ask, is because that is the way that acute zonal occult outer retinopathy, (AZOOR), usually presents. Photopsia is the presence of perceived flashes of light, most commonly associated with posterior vitreous detachment, migraine with aura, migraine aura without headache, (known as an acephalgic migraine), retinal break or detachment, etc. Scotomas are dark spots, or displays of flashing light patterns, (scintillating scotomas), that tend to start somewhere near the center of vision, and slowly expand outward in a circular or oval pattern, (though in some cases they can be all sorts of shapes), until they pass out of the field of vision. They usually last about 20 to 30 minutes. In a classic migraine, they will be followed by an intense headache, but it's possible to have scotomas entirely without a headache. (I have experienced scintillating scotomas myself, always without a headache). If you Google the word "scotoma", or "scintillating scotoma" you can view some video representations of what these visual events look like. My point is, if her "condition" did not begin this way, then I question the diagnosis.
http://www.pubmedcentral.nih.gov/articl ... id=1772472
Another possibly could be a form of Chronic Inflammatory Demyelinating Polyneuropathy, (CIDP), but it's difficult to pin down, since symptoms can be unique to the individual, sometimes.
http://en.wikipedia.org/wiki/Chronic_in ... neuropathy
If the eyes are a target of the disease, multiple sclerosis can be connected, if the disease is not properly treated. Do you know if your friend had an MRI that might have shown the white matter lesions shown in this article?
http://www.rcophth.ac.uk/docs/members/f ... ring03.pdf
Here's a case study of a 34 year old woman, with persistent visual defects due to chronic exposure to toxic molds, who was diagnosed and successfully treated:
http://www.ncbi.nlm.nih.gov/sites/entre ... 920306[uid]
You might print that article out to show to your friend's doctors.
As to whether or not either of your cases might be connected to black mold, is the 64 dollar question, (does that reference to "the 64 dollar question" date me, or what - it refers back to a TV show from the late 1950s, I believe. LOL). Unfortunately, a lot of the sites discussing mold, are selling "natural remedies", so one never knows how much credence to allow for what they are saying. Here's an article that doesn't appear to be selling anything, with a general discussion of the hazards of exposure to fungus. A connection with Crohn's disease is mentioned, and many other diseases, as well.
http://www.mold-survivor.com/assoc.illness.html
Certain molds create their own specific types of mycotoxins, which can have various types of very adverse health effects, (some of which are mentioned in that article). These mycotoxins are sometimes found in wheat, corn, and other grains, grown under stressed conditions. Fortunately, most State Departments of Agriculture, monitor the levels of the most important mycotoxins, in years when they might be a problem, and they do a pretty decent job of keeping them out of the food chain. One does not have to eat food containing these mycotoxins, however, in order to be affected. Inhaling the spores of many/most types of mold can also cause very serious health issues. Not just allergy issues, but serious stuff, such as a fungus developing in the lungs, or somewhere else in the body. There is a lot that we don't know about fungi, and the mycotoxins that they produce.
I can't find any references in the literature to a connection between mold exposure and MC, but that does not mean that a link does not exist, because many varied types of triggers have already been identified. So little is actually known about the disease, that the jury is still out on many, many aspects of it.
It's great to hear that your training is coming along so well. Thanks for the update, and don't forget to keep us informed.
Love,
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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jillian357
- Adélie Penguin
- Posts: 112
- Joined: Sun May 04, 2008 2:23 pm
- Location: Ohio
- Contact:
Ah Tex,
I just KNEW I could count on you for a great response! Thanks, as always, for being out there for "us", this wonderful MC family!
I will print this out for sure and give it to my friend tomorrow at work. I do know that she does have a history of migraines, and describes seeing "flashes" and "patterns" of light in her direct field of vision. She describes them as almost "flowerlike", and they drive her absolutely crazy (as I can only imagine they would.)
She is so frustrated because she has seen a myriad of specialists and they all scratch their heads and tell her they just don't know the cause or how to stop it. She did have an MRI that was all clear. Her one doc has begun a case study on her because her situation is just so unusual.
She has had steriod injections in her worst eye and also taken oral steroids as well.....neither had any effect.
Right now she is on some anti-viral medicines (experimental to see if it helps...so far, no dice).They have also suggested washing her blood to clean out the anti-retinal antibodies, but then she would have to take chemotherapy treatments and immune suppressing drugs....basically treating her as if she has cancer, which thankfully she does not.
She has declined this treatment, and I don't blame her one bit.
We are very close friends, and it's very troubling for me to watch her suffering. It certainly makes living with MC feel like a walk in the park (not that it is, but I am certainly counting my blessings tonight). It still seems SO odd that we both got sick the exact same month and year. Maybe someday we will find the connection, if there even is one. Who knows?
Thanks again for all the info and links. I was hoping you could at least provide a little information, and you did that and then some!
Thanks again!
Love,
Jill
P.S. I promise to not be such a stranger, and I will keep you posted on the marathon training. I'm still in disbelief that I am going to do this...what was I thinking when I registered?
LOL. I must be NUTS!
I just KNEW I could count on you for a great response! Thanks, as always, for being out there for "us", this wonderful MC family!
I will print this out for sure and give it to my friend tomorrow at work. I do know that she does have a history of migraines, and describes seeing "flashes" and "patterns" of light in her direct field of vision. She describes them as almost "flowerlike", and they drive her absolutely crazy (as I can only imagine they would.)
She is so frustrated because she has seen a myriad of specialists and they all scratch their heads and tell her they just don't know the cause or how to stop it. She did have an MRI that was all clear. Her one doc has begun a case study on her because her situation is just so unusual.
She has had steriod injections in her worst eye and also taken oral steroids as well.....neither had any effect.
Right now she is on some anti-viral medicines (experimental to see if it helps...so far, no dice).They have also suggested washing her blood to clean out the anti-retinal antibodies, but then she would have to take chemotherapy treatments and immune suppressing drugs....basically treating her as if she has cancer, which thankfully she does not.
She has declined this treatment, and I don't blame her one bit.
We are very close friends, and it's very troubling for me to watch her suffering. It certainly makes living with MC feel like a walk in the park (not that it is, but I am certainly counting my blessings tonight). It still seems SO odd that we both got sick the exact same month and year. Maybe someday we will find the connection, if there even is one. Who knows?
Thanks again for all the info and links. I was hoping you could at least provide a little information, and you did that and then some!
Thanks again!
Love,
Jill
P.S. I promise to not be such a stranger, and I will keep you posted on the marathon training. I'm still in disbelief that I am going to do this...what was I thinking when I registered?
LOL. I must be NUTS!Jill,
Yes, her description of a scintillating scotoma is very accurate. Has she ever tried to find a neurologist who specializes in migraines? That might be the key to finding a solution. Most neuros are not well enough acquainted with the complex issues surrounding certain types of migraines to be able to properly handle a really difficult case. She needs a specialist among specialists.
I believe that your friend was very wise to turn down that treatment. Virtually everyone has anti-retinal antibodies in their blood. If they were removed, they would probably promptly reappear, unless she stayed on the immune system suppressants forever, which would be a very risky thing to do, also. She would have gone through a very risky procedure, with little to gain, IMO. I suspect they were looking for a guinea pig, to test out their theory.
http://www.ncbi.nlm.nih.gov/pubmed/18347451
You're not nuts - you're just ambitious.
Love,
Tex
Yes, her description of a scintillating scotoma is very accurate. Has she ever tried to find a neurologist who specializes in migraines? That might be the key to finding a solution. Most neuros are not well enough acquainted with the complex issues surrounding certain types of migraines to be able to properly handle a really difficult case. She needs a specialist among specialists.
I believe that your friend was very wise to turn down that treatment. Virtually everyone has anti-retinal antibodies in their blood. If they were removed, they would probably promptly reappear, unless she stayed on the immune system suppressants forever, which would be a very risky thing to do, also. She would have gone through a very risky procedure, with little to gain, IMO. I suspect they were looking for a guinea pig, to test out their theory.
http://www.ncbi.nlm.nih.gov/pubmed/18347451
You're not nuts - you're just ambitious.
Love,
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.