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Post by ibzahp on Feb 17, 2010 15:45:17 GMT -5
Its been ten years since I first went to the doctor for this condition. I went to renwned specialists at the Eye and Ear Hospital at New York City. I went to Beth Israels ER. I went to the health food store and tried food grade hydrogen peroxide (I am Not advocating it however!). I was dxed w/scabies at one point which only made everything worse. I didn't even start to dream ,however, that this would be an ongoing, chronic condition that would haunt me for the next ten years!
I went to my GP, I went back to the eye doctor and I felt so alone and very scared.
The renowned specialists were the first in a long line of many to say that what was happening to me couldn't be happening. At the time I thought that I had a horrible fungal infection of the eyes that was causing these long stringy moving fibers to gravitate to my tear tucts.
I was horified that I had this huge ugly lesion on my back in the area of a previous spine surgery. I didn't realize that the problem with my eyes was related to the lesion in my back.
The last five years I have been hopeful as progress seemed to be happening with getting this condition recognized. The CDC had their study and there was the work of Wymore, Harvey,Stricker,Neuman,Springsted,Carnicom, and many others. I really thought that I would by now be able to go to my GP and at least have it acknowledged that my illness is real.
Lately, Though, it feels to me that little progress is happening. We are hearing less about our condition in the media. I don't even hear anything much about the fact that Joni Mitchell is now suffering w/this terrible malady. This is worse than having Lyme. I can't even get a diagnosis.
What can we do so that action will be taken by the medical community? Surely their must be something ? What do people think? Am I imagining that we are going backwards? Was that the whole reason for the CDC study-to waste time till the heat is off them and we just go quietly and die? Sorry to be so dark but my frustration is palpable.
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Post by bannanny on Feb 17, 2010 16:29:19 GMT -5
I agree with you 100% ibzahp. The only thing I've heard recently that was a good thing for us was that Dragonfly got disability due to morgs. We have to know that's a very good thing too. But you're right as far as the media and the CDC goes. They're (especially the CDC) definitely handling this whole mess wrong for some reason... I think we can all figure out what that reason is too. I think they're trying to avoid a mass panic myself.
You're not being dark tho and you don't need to apologize... you're simply being realistic. Try to hold on tho and have faith... it's the one thing that's gonna help all of us.
I love you ~~ bannanny
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Post by ctbarb on Feb 17, 2010 16:53:18 GMT -5
Dear Ibzahp, I too have had this disease since December, 1998, and feel the same way as you! However, I'm hoping that this Friday when I go to Boston that I get some kind of diagnosis. I've sent them more pix of what's come out, that they don't need to see anymore, they said. Does this mean that they HAVE a REAL diagnosis? Does this mean that they actually are going to TELL ME WHAT it is? Does this mean that they are going to say, "You can't get that here!" again? Hopefully not. If that is the case, I will be more than disappointed. However, this time I am NOT going to take NO for an answer! This time, I am too close to finding the answers that we deserve, and will make the "Powers that be" stand up and be accountable. My life is in a very critical stage, as yours is too, and Karen's, GlennB's, and so many more of us that the names just don't come to mind. We've lost so many more to the lack of compassionate caring on the part of the medical community, their lack of research initiatives, their lack of knowledge, and their lack of standard of care! The only thing that they do NOT lack is arrogance, raking in the money for our visits, prescribing drugs that we can ill afford and actually don't need; and they do it with reckless abandon. I've already "greased the wheels" with a national program, have sent my documentation to them with the hope that they will be responding in the near future. If I do not hear from them, I will continue to bang on their door until I see someone! This facility is not far from me either, and a day trip will happen if necessary! I also will have testimony with me, either in person or in writing, of just what some professionals have seen come from my body. This time, there will be no holes barred! If I have to, I will beg for them to listen to me, and hear the stories of how so many of us are dying and sick beyond caring any longer...and just how many of our loved ones have already been taken by this disease that we only know as "Morgellons". Please do not give up, I haven't, and I won't until my last breath leaves this destroyed body. I was sent back from Heaven to 'finish my work' as my husband put it, and I will, with the help of all you wonderful, loving and caring folks here. We WILL do this! Just be a little more patient...we have time...but they who are guilty of the insensitive and rude ways we've been treated, do not. Let's stick together! There are many of us, and our voices will be heard...just hang in there! At this point, we know more about this disease than they do or ever thought of knowing....that is going to be what takes them down! Have Faith, have Hope, and above all, Believe in Him, for he walks beside us all... Love and prayers, ctbarb
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Post by glennb on Feb 18, 2010 1:11:43 GMT -5
ipzahp,
I agree with you. It seems that our disease is being swept under the rug. We are not getting the kind of media coverage that was happening a while back.
I always suspected that the morgelllons media coverage was being orchestrated by the government. It seemed as if every headline about Morgellons contained the word "Mystery" or "Mysterious". One thing that I have noticed with the media is that when news stories describe a problem as being a mystery or mysterious you can darn well bet that it has something to do with secret, illegal or covert government activities. (The UFO "Mystery" and the alien abduction "mystery" come to mind)
What has the CDC done that has made any difference in our health?
There is still no public education about Morgellons. No Government funds for research.
I have felt for a long time that our group suffering from Morgellons needs to model it's actions after what the gays did when AIDS first broke out and the government was trying to ignore the AIDS epidemic.
The gay population moved into high gear and become stridently vocal about getting money for research. They basically threw a very public fit and didn't calm down until they got the significant amounts of research money from the government that were needed. AIDS became a cause celebre.
They also made sure that all kinds of relief programs were put into action that would financially help those with AIDS. Government funds were set aside for those who could not afford to pay for the expensive medications costing thousands of dollars a month. The infected could apply for grants to help with housing expenses and financial relief. In San Francisco local stores offered discount cards to those with HIV.
I have a friend with AIDS who has been receiving his meds for free for over 10 years now.
An Aids Hotline was started to provide the latest information on AIDS plus referrels for support and treatment for those suffering from the disease. In San Francisco Open Hands was founded, a service that delivers free meals to those with HIV. Aids Clinics were set up offering free treatment. A test was developed for early identification of the infected allowing early treatment and extended survival times. An entire wing of a local hospital was set aside for the AIDS infected Project inform, The AIDS walk, The AIDS QUILT , Candle light vigils being held nationwide, Many celebrities threw their support behind AID-a thons to raise money for the cause... Hollywood jumped on the band wagon producing several movies with AIDS themes, Philadelphia being one of the most well know.
As a result of very vocal, in your face, gay political activism, the constant clamoring for research funding, the sometimes violent demonstrating and marching, a snowballing awareness of AIDS amongst the general public was created putting the heat on the politicians until they could no longer ignore the situation. This resulted in massive funding for AIDS research, support programs and public education about the "mysterious" disease. (Yes, HIV was also referred to as a mystery disease in it's early years. Turns out the government secretly had a hand in the creation of that disease as I suspect they have had a hand in the creation of our "mystery"disease).
The money for AIDS research was not voluntarily offered by a government motivated by concern and humanitarian ideals, rather it was painfully and forcefully extracted from a government reluctant at first to provide any funding at all. It was extracted by the very public political activism of an outraged community being devastated by this horrible illness.
Wouldn't it be nice if there was similar funding and support for our disease as many of us, myself included have been impoverished by this illness. Where are our clinics, research funds, community support and celebrity fund raisers?
It will never happen unless we somehow find the will to mobilize and act as a group to become a very loud, annoying squeaking wheel that can not be ignored. We need to make such a huge stink about this that they will throw money our way just to shut us up.
Question is, how do we mobilize for maximum effect and how to we inspire others to join us?
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Post by lilsissy on Feb 18, 2010 1:57:40 GMT -5
I agree glennb, Question is, how do we mobilize for maximum effect and how to we inspire others to join us?
Jen
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Post by freaky on Feb 18, 2010 5:57:54 GMT -5
Would it help any to hand out information to the elementary, and what- ever comes after elementary (excuse, a fog has set in), or Jr. high, or high schools, & scare the Pooh out of the parents. They would have to be told, if you're concerned, you'll just have to contact your local congressman. If they got real scared they may raise some money to have this unknown, spreading entity investigated. It's possible , if enough fear was stirred up, a P.T.A. meeting might just be in order.
It would probably be good if I went out in public tomorrow, and let the community get a first hand glance of a mold face. Oh rats! I mean Morgs. I think it best I seek a Dr., throw my mold report in his face, & see if I can get some loving help though. Didsomeone come up with any tricks for mold on the face. Funny how all my symptoms changed right after I found out I had mold. Sounds a little psychotic/neurotic, but they did. Coughing up goo increased. Multiple sneezes due to tickling in the back of my throat. I consecutively sneeze 6-9 X's. Now when I pick my face, pure white "MOLD" comes out. I scrape it off with my finger nails.
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Post by rhorn2006 on Feb 18, 2010 10:23:25 GMT -5
It's sad to say but the way our medical community reacts "to all newly emerging conditions" is to dismiss it until it is so wide spread that little of nothing can be done about it.. In every "newly emerging condition" its the first several years of onset cases that dont get treatment until it's too late..
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Post by ibzahp on Feb 18, 2010 14:02:10 GMT -5
glennb,
Your words are inspiring- I think your on to something! CT Barb don't give up girl!!! Friskers we gotta start somewhere!!!Bananny, lets start a little wild eyed panic!! Things have gotten entirely too quiet Jen-your smart and intuitive and we need your organizational (can't spell anymore) and analytical abilities. Same goes for you rhorn2006! I for one am not going quietly into that dark night . Lets do it for Sue and for ourselves and for all the people waking up this morning with this horrendous scourge thinking its a simple case of scabies... Where do we start? I wish I felt like the MRF or Charles Holman Foundation was taking action but to me anyways they seem so staid and quiet. We have got to slap people in the face with this ..And WAKE PEOPLE UP TO OUR CAUSE. I know with Faith and determination we are unstoppable. I love my morgie family, if we both stick together and take action we will prevail. Its interesting,glennb about the government mystery part. I really pray we can organize and set a fire under people to get help for our cause! I can hardly wait to hear from others!
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Post by bannanny on Feb 18, 2010 19:20:29 GMT -5
I wonder why we're not hearing more from people like Louise Mandrel and Joni Mitchell. They could easily start this thing up and get funding going from other celebs, but they aren't... why not? I don't know, but it gets me really good right in the gut.
I could start some wild eyed panic ibzahp, just from some of the threads I've written I'm sure. Either that or be called completely out of my mind... which I imagine would end up being the case. I'm willing to put anything I can together tho, but I need someone who (like you said) is organizational. I can't think anymore at all, so it makes it really hard to even want to come up with some kind of public awareness or contacting the media. I just don't have it in me anymore... sorry to say.
hugs ~~ bannanny
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Post by mfromcanada on Feb 18, 2010 23:56:05 GMT -5
me too, had this since 1999/2000 and simply getting worse and worse.
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Post by morghunter3 on Feb 19, 2010 11:01:58 GMT -5
mfromcanada, this is incredible, when I first got sick it was on Vancouver Island in 1998. Didn't even know about the spraying but I have pictures taken at that time there that show chemtrails. Too much. morghunter 3
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Post by mfromcanada on Feb 19, 2010 16:55:26 GMT -5
morghunter3, thats interesting. Another fellow from here was in an exercise group that I was in at the time. There were only about 6 of us. He got it too. He started the morgellons organization here in Canada.
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Post by freaky on Feb 20, 2010 2:39:16 GMT -5
Please excuse me for getting so off topic. Love, freaky
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Post by kammy on Feb 20, 2010 4:00:14 GMT -5
As I've looked back, I think I started showing subtle symptoms in 1997, 1998. I wonder what new and different happened in those years?
We will never get much of anywhere unless we become more vocal. I read somewhere that Jesus was an 'in your face' type of preacher at times... there's nothing wrong about being vocal, especially for such a worthy cause.
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Post by ibzahp on Feb 20, 2010 20:54:46 GMT -5
Kammy you strike me as an organized (and might I say extremly intelligent) woman. I absolutely believe we must get vocal. Do you have some ideas about where to start. I really want to do something proactive and I want to first see a doctor that is sympathetic to the illness for my own direction but right now I also want to do something to call attention to our cause. Do you have any thoughts about where I might begin? I don't have time to waste any more. I feel like a fire is burning in me and I have to get my voice out there for our cause. I will not any longer allow myself to play that game of chicken with doctors about my illness. I am not DOP and I never have been. Its high time the public know that this scourge is the real deal. As T ;Dweety says "it's not candy in the box,doc!"
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Post by freaky on Feb 21, 2010 3:20:26 GMT -5
Bannannyeahey, don't ya kinda think it may just be because they haven't suffered enough yet? Just a thought. If there were any way to find an address, or way to contact them, a letter would be great. It's quite possible they just don't want to bring attention to themselves. Not knowing about the disease, then finding out they have it might be embarrassing to them. You just never know. Writing them would be so great.
They're both at stage one, don't you think? They may still be trying to find a dr. who doesn't insult them within 5 minutes of their appointment. Just because they're famous doesn't mean their drs. haven't been brain washed yet. And, because they're not members of Lymebusters, just think of all the things they don't know. To write them would be an Honorable, humane thing to do. IMHO Of course, maybe not.
So, I agree with you too, Ibzahp, and glennb, and ctbarb, & I think you're adorable Bannanny! I thought it was a big deal that we had mold in us. I know that some people have had mold, but I thought ours was quite different. Isn't that a story for the papers? I think this is the time to reve up our engines, like if we don't do something now, we never will. Following in the footsteps of the aides people seems to be the best way to go, so we won't have to think as hard. We need to get the groups to come together. Possibly seems logical that we have a group leader, & I nominate Ant. All the other groups should have a group leader too, & the leaders should communicate to each other deciding what project to do when. We need to set goals, I believe, and dates at which we will start working on them. We need to get organized. I'm not sure anything will happen if Lymebusters does their own thing, & the other groups do their own thing. Now seems to be the time because we are either very miserable, or have experienced being very miserable. Soon this will be like a death group. We can all wait around till each other dies because no one helped us. That wasn't very nice, or positive. I think I'm full of hot air tonight. I have to go to sleep now. These were merely suggestions. Lilsissy, I think I just took your questions, & made a long winded paragraph asking the same thing. i don't know. Love you guys, freaky
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Post by kammy on Feb 23, 2010 17:35:46 GMT -5
Hi Inez, I just saw your question. I have a suggestion:
We've seen where 90+ percent of us with Morgellons have Lymes, we need to align ourselves more with the Lymes Disease advocates, it seems that they are more organized? We possibly need to piggy back in with them? I know the German doctors in Augsburg consider Morgellons as a co-infection of Lymes, we need to educate our doctors as to what is happening.
Many of us with Morgellons don't even know our Lymes status, we need to help those advocates to push for better testing, we need to get more involved with them.
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Post by bannanny on Feb 23, 2010 17:53:06 GMT -5
Good ideas freakerdeeks... now we just need someone to start it all up. I'm too tired myself, I just don't have an ounce of energy left in me anymore. Been fighting this thing so hard I don't have any fight left in me for anything else it seems. But like I said, great ideas and I know someone here feels good enough to get the ball rolling eh?
love ya's ~~ bannanny
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Post by ibzahp on Feb 23, 2010 18:22:33 GMT -5
I sen't an email to the reporter in Seattle who had spoke to Joni Mitchell about outr condition. I asked if Joni might be willing to help with this. I also asked if she might want(the reporter) to interview some of us in this area.I am waiting to hear back as she is on vacation for a few days. I don't want to let this thread die. I would much rather that we do something. As for the lyme idea-its hard for me to know because I have had the usual lyme test with the usual result as my hmo won't pay for the other kind. So I am not sure that the Lymies would even want us? It seems they are not looking for more controversy. I think we need to organize for Morgellons. What do others think? I am not against it. I guess I just need more convincing Kammy? Please lets keep talking and develop a plan. Any action will have more effect than none at all!!!
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Post by kammy on Feb 24, 2010 6:28:15 GMT -5
We're in a very difficult position. We don't know the extent of how much censorship is involved around our disease? The media used to show a little interest by putting a story on the news once in a while in the past - has that changed, have they been reached and corrupted?
Our congressmen can't speak out for us, they don't know what to say or to propose because we're presently in the hands of the military, the CDC, WHO, and the "stakeholders", etc. Our only hope is to ride along with the Lymies, afterall - this should cover 90+ percent of us? It would seem that a lot of the drug treatments for Lymes would help the person with Morgellons? That with time, the awareness of what Morgellons is would be better known to the Lyme doctors, such as those here in Germany as a prime example, that they are having to treat 90+ percent of people with Lymes for Morgellons also. And that eventually, Morgellons specialists would stand alone and be more of a specialty.
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