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Post by in tokyo on Jun 8, 2009 7:25:00 GMT -5
Wow! What a story! I'm so sorry to hear about all your difficulties CTBarb. And I'm amazed at what a mess they will get you into by giving one bad idea after another. I hope by now you have found at least one good doctor who can take care of these things. There are quite a few of us who have taken accutane Prior to getting morgellons.........
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Post by in tokyo on Jun 7, 2009 15:47:22 GMT -5
Hi Kmarie, Yes, I tried RetinA previously too, when it was first out. Recently the derm has given me a lot of different topicals, none of them make a difference- they just irritate the skin. I wonder if retinoids has contributed to getting morgellons, or somehow making our immune system vulnerable? So many questions and so many new risk factors... I wish there was a scientist out there who knew what this was and where it came from and could tell us.
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Post by in tokyo on Jun 7, 2009 15:05:27 GMT -5
Hi Toni, Thanks for the reply. I actually read your post where you mentioned taking accutane for brief periods before I decided to start the medicine, and it was a deciding factor for me- so thanks for that help! Yes, I've been taking the highest dose for my body weight daily for 4 or 5 months now. After the 1st month, nothing new is happening. Thanks for the recommendation of Bismuth Subgallate- that sounds great- because it takes so long for these wounds to heal, and who knows if they're active or not. Any more suggestions would be wonderful. I'm quite sick of what I've begun referring to as 'my nightmare face.'
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Post by in tokyo on Jun 7, 2009 13:50:42 GMT -5
Oh, for the ease of using the search function, accutane can also be called isotretinoin.
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Post by in tokyo on Jun 7, 2009 13:48:23 GMT -5
Hi everyone, I searched to see if anyone had reported on doing accutane against morgellons, but I don't see a thread relating to it. I'll report my results, maybe would be a help. Being that there's very little to lose in terms of health and longevity, I went along with my dermatologist's suggestion to try accutane for my "acne." It doesn't get rid of morgellons, the same spots are in the same places. But there are some affects: - The morg spots on the arms, chest, back, seat went away in the first month and haven't returned. - The chronic lesions around the mouth and jaw have gotten more shallow- the oil glands are being lovingly destroyed by the toxic medicine. This maybe gives the morgellons less food? Less soft tissue to grow in? At any rate, the morgellons spots now are very surface. It is like a carpet burn, with a papery scab, and from the scab there are still the little gel fingers that want to dig down, but they're much smaller and fewer. - Perhaps because there is less oily food or a worse environment, (?) the morgellons spots have been migrating. They began moving from their 4-year center around the chin in the first month. They are now up toward the eyes, on the nose, temples, very active in the ears, and for the first time ever, on the scalp. - Fibers are still there, itching is still there, sensitivity to using the computer is still there, fatigue still there... - It's difficult to say whether this or antibiotics is 'better'- after a month on good antibiotics, the organism learns and the antibiotics stop working. But at least this prevents those really deep lesions... So, the conclusion, at least for now, is that this medicine isn't a direct match for the problem. Not surprising, but at least I tried. Hope this helps someone if you're trying to ponder the treatment. I'll update again in a couple months, to say what happens after the medicine stops. (PS, it's a bit funny to see how perplexed my poor young dermatologist looks when I show up every checkup looking exactly the same! I haven't mentioned the 'M' word.) ~Take care and hope you all feel ok.
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Post by in tokyo on Feb 17, 2009 12:14:29 GMT -5
- God doesn't think he's a doctor. ...Came across that on a holistic medicine site a while back.
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Post by in tokyo on Feb 17, 2009 11:51:08 GMT -5
Thanks for your replies, nice to talk with you all again too- I look in but don't always post. Just in case you visited the link I posted above, I wanted to warn you that I figured out they drop in a spy cookie in your computer, to trace all the websites you visit! Very nice of them to care so much about us. My scanning software caught it and let me know. So, if you've visited their webpage, find their cookie and delete it.
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Post by in tokyo on Dec 27, 2008 4:51:42 GMT -5
One of the things that has been confusing for us in morgellons is that there are several different types of fibers- how to conclude? I liked this opening quote from an article on physorg.com: "A single batch of carbon nanotubes -- molecular carbon cylinders that may one day revolutionize electronics engineering -- often includes more than 100 types of tubes, each with different optical and electrical properties." link: www.physorg.com/news148580751.htmlThis website has a lot of news on nano developments- all of which are heralded as bringing a new and better future. They're very happy for instance that nanotubes bond tightly with the neurons in our brain.--- Since they've been so kind to my skin, I can only hope to think what they may be doing in my brain.
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Post by in tokyo on Dec 27, 2008 4:24:05 GMT -5
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Post by in tokyo on Apr 10, 2006 23:38:55 GMT -5
Hi, I'm wondering if there has been a survey done specifically to examine person-to-person transmission. How does it get passed person to person.
I know a couple options for how I got it from a 3-day house guest. My selfish motivating goal is of course trying to protect giving this to my loved ones- IE, can I visit their house, just not sneeze? And the altruistic goal is of course the same- I think we would all like to be able to relax when we could, not worry about passing it by going to the movie theatre, and be able to know how and when to be careful and responsible.
So I keep thinking and thinking about this, and I want to do a survey. I already wrote up a lot of questions, I'm sure there can be more. It's not a general survey like Alex's. It is specifically to understand person-to-person.
Anyone have tips on which software to use, how to get it up and going? Or otherwise, if this has already been done and I just missed the thread. Thanks.
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Post by in tokyo on Mar 27, 2007 22:36:12 GMT -5
Very very interesting.... imagine the comic book rendition...
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Post by in tokyo on Mar 27, 2007 22:35:02 GMT -5
A friend gave me a perfect, uncreased $10 bill from the bank the other day- why? It has red, blue, and black fibers embedded in it! Wow! Think about that one.
Since then, I've been looking at all the bills- yep- they're there! Take a look yourself.
I don't know if distribution of bills makes a difference- these are bills circulating in California.
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Post by in tokyo on Mar 28, 2007 0:29:33 GMT -5
haha. -You cherish each swiffer cloth and plot the exact strategy of use -You feel paranoid whenever helicopters cross over the house -You know each corner of your house exactly by 'danger' ratio- great anxiety around dusty stacks of magazines -You get caught at stoplights meticulously examining some invisable sunlit fiber on your fingernail -When visiting friends' houses or shopping, you automatically check what kind of dust is on the shelf -Your boyfriend can't understand why it's so spiritually and physically exhausting to vacuum or do laundry- "just don't do it so much" -Cleaning the kitchen counters will never mean wiping up food spills -Every item has a timer: beginning when you first see it at the store [safe], to first taking it home [pretty safe], to 10 days later [contaminated]. You know the precise timing on each object in your life. -You have positive emotional responses to words like 'salt' -You vacuum the sheets on the bed -and yes!! When changing the dryer lint is absolutely the most terrifying thing in life.
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Post by in tokyo on Jan 7, 2007 22:44:43 GMT -5
I just posted a thread on the nano safety meeting at the federal govt, taking place 3 DAYS AGO--- It's about time!
These are 3 people we all need to write letters to and ask them to be aware of Morgellons; to introduce what we are experiencing; and to ask them to use their expertise to help us solve this mystery. They can help just by keeping us in mind, and maybe they'll run across something that fits!
Send them an email! Give them a call! Be nice!
What: Testimony at First U.S. Government Public Meeting on Nanotechnology Environmental, Health, and Safety Research Needs
1) Dr. Andrew Maynard, chief scientist, Project on Emerging Nanotechnologies, Woodrow Wilson International Center for Scholars
2) Sharon McCarter at (202) 691-4016 or sharon.mccarter@wilsoncenter.org. 3) Julia Moore at (202) 691-4025- or julia.moore@wilsoncenter.org.
The Project on Emerging Nanotechnologies was launched in 2005 by the Wilson Center and The Pew Charitable Trusts. It is dedicated to helping business, governments, and the public anticipate and manage the possible health and environmental implications of nanotechnology.
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Post by in tokyo on Jan 7, 2007 22:37:42 GMT -5
OK Everyone!!! These are 3 New People to contact to let them know what we're experiencing with Morgellons! No harassment- they could be on our side! They need to know:
Dr. Andrew Maynard, chief scientest, Project on emerging Nanotechnologies. Sharon Mc Carter sharon.mccarter@wilsoncenter.org Julia Moore julia.moore@wilsoncenter.org
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Post by in tokyo on Jan 7, 2007 22:35:11 GMT -5
And this: www.azonano.com/news.asp?newsID=3525What: Testimony at First U.S. Government Public Meeting on Nanotechnology Environmental, Health, and Safety Research Needs Who: Dr. Andrew Maynard, chief scientist, Project on Emerging Nanotechnologies, Woodrow Wilson International Center for Scholars When: Thursday, January 4th, 2007 at 1:15 p.m. Where: FDIC Training Center, 3501 North Fairfax Drive, Arlington, VA 22226 The Project on Emerging Nanotechnologies was launched in 2005 by the Wilson Center and The Pew Charitable Trusts. It is dedicated to helping business, governments, and the public anticipate and manage the possible health and environmental implications of nanotechnology. For more information contact Sharon McCarter at (202) 691-4016 or sharon.mccarter@wilsoncenter.org. Alternatively, contact Julia Moore at (202) 691-4025-office, (202) 277-1415-cell (holidays and after normal business hours), or julia.moore@wilsoncenter.org.
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Post by in tokyo on Jan 7, 2007 22:33:17 GMT -5
Hello, did anyone KNOW the federal government is having meetings on this? Have they talked with our friends at the CDC? Probably not, but it would be fruitful! www.azonano.com/news.asp?newsID=3529Here are some quotes: "Prioritizing nanotechnology risk research isn't rocket science," said Project on Emerging Nanotechnologies chief scientist Andrew Maynard. Dr. Maynard's remark is in his testimony today before the federal government's first public meeting focused exclusively on research needs and priorities for the environmental, health and safety risks of engineered nanoscale materials." and: "According to Maynard's analysis, despite investing more than $1 billion annually on nanotechnology research, U.S. government spending on highly relevant nanotechnology risk research is only $11 million per year." Let's get in contact with Mr. Maynard and let him know our concerns! He seems aware that responsibility is necessary. (Although, after Morgellons, I'd rather see the whole field STOP.)
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Post by in tokyo on Jan 7, 2007 23:00:21 GMT -5
I experienced a rather dramatic reaction, shall we say, when I ate a tin of IceBreakers- those sour fruit mints. They have several odd kinds of sugars. For 4 days straight, my whole digestive system felt tight as a balloon. It definately had an effect. And afterwards, my morgellons felt better! Who knows. I always eat those now. Some sugars are not able to be digested by bacteria- meaning, bacteria eat them, and then die. I hadn't heard the thing about aspartame and cockroaches! Anything is worth a try.
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Post by in tokyo on Jan 7, 2007 22:52:30 GMT -5
Abundant sudoku, kakuro, and instructions available online! Much easier than finding info about microbio nano pathogens, in fact. You can pick up books at Walmart or the bookstore.
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Post by in tokyo on Jan 4, 2007 20:01:58 GMT -5
When I was at my sickest, I began doing sudoku and kakuro. I think this helped keep my brain and attention in check. I began to feel more focus and clarity. It also helps releive stress: for several months, I was obligated to devote all of my energy to cleaning, bathing, medicating, laundry, doctors, hospitals, diet. This sucks. You feel terrible. Sudoku and Kakuro are a great solution because the world of numbers is far removed from disease. It numbs the stress. So I recommend it! For your kids too. Good for keeping the brain moving.
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