kmarie
New Member
The Genie is out of the bottle......wishing for a cure in 2008
Posts: 40
|
Post by kmarie on Jan 22, 2008 0:58:05 GMT -5
Hello everyone, I have been trying to get this story on the news here in Southern Indiana. It aired tonight. Here is the news Video:tristatehomepage.com/content/fulltext/?cid=4333The reporter stated the hot spots, but at my request added that we had cases right here in Indiana and the CDC just doesn't want to panic people. I asked her to say that because I am sick and tired of all the reports focusing only on CA, TX, and FL while we know it is all over. BEST YET, the doctor interviewed said THIS IS REAL with no hint of delusion! I immediately sent her a thank you email and here is what she replied back: Here are two emails she just sent me: 1st email after the report ---------------------------------------------------------------------- 50 minutes - I've been trying to post the story. The encoder is positively the most aggrivating piece of junk in this place. I'm done. I"ll send a note and have day-side folks post the Morgellons story. Sorry, but it'll be 12 hours or so. Jackie Monroe WTVW Fox 7 Anchor 477 Carpenter Street Evansville, IN 47708 Note: I asked her if she would post the video........... the man who usually puts then on the web site was not there today. That is what she is trying to explain. ----------------------------------------------------------------------------------- 2nd Email Oh- forgot to tell you. A woman called and said she has it. And she was extatic to see it on the news. Now, her doctor identified it right away and didn't treat her poorly. But our reporter Jamie Weiss took the call and really wants to do a follow up with this gal I told her how ugly most people get treated by medical professionals and said you might be able to offer some of the darker side of how people get treated. Email her at: Jweiss@wtvw.com (if you like.) Best, Jackie Monroe WTVW Fox 7 Anchor 477 Carpenter Street Evansville, IN 47708 [/SIZE] I imagine the woman who called after the segment was treated better by her Physician due to the CDC press release announcement and study. Feel free to send stories to Jamie Weiss so she can follow up and include what state you live in so everyone will know how widespread this is. Also, include the suffering, seclusion, and how your life has changed. Tell about the rude treatment from medical professionals, etc............ whatever, tell your story so this follow up will reveal the true life altering changes that this disease has caused. Let the CDC figure out the cause............Jaime just want the "personal" stories so she can run a true story on what we had to go thru while the CDC dragged their feet. Thanks so much
|
|
kmarie
New Member
The Genie is out of the bottle......wishing for a cure in 2008
Posts: 40
|
Post by kmarie on Jan 22, 2008 7:36:14 GMT -5
Jamie Weiss reporter wants to follow up on story.
I am waiting for the link to be put on the website.
Hi, here You can used this email address below for JAIME WEISS
=================================================================
Jaimie Weiss - Reporter
Jweiss@wtvw.com
Jaime ( the reporter who took the call immediately after the news aired )
wants to follow up on a longer story. Send her your story, where you live,
and how badly you were treated by your physician, what you lost,
how family/friends treat you and just anything regarding our sufferring.
She want the story to be more on "the darker side of how people are treated"
Let's not tell "WHAT WE THINK MORGELLONS IS" Leave that part to the CDC.
Rather, only tell your personal story and how it affected
your personal life.
OF course, include where you live so that Jamie will
know how WIDE SPREAD this disease is and let her
find out how horrible this devastates our lives, how we
lost job, finances, the physical and emotional pain.
How many of us have to hide our disease just to keep
employment.
Tell how you were treated by Physicians. Our fear that we feel as there is NO TREATMENT. Doctors don't know how to help because the CDC has NEVER helped and how long it took for the CDC to "finally do a press release".
Just be yourself.......... she primarily wants to know how badly the health care has treated us. She not investigating the cause of the disease, but she is wanting to report the effect it has had on our lives.
If you know, you could add how you think you "got this". I know it started after a sewage exposure for me.
Thank you, we are all in this together and YES, I agree we have to keep this story aliive.
|
|
kmarie
New Member
The Genie is out of the bottle......wishing for a cure in 2008
Posts: 40
|
Post by kmarie on Jan 22, 2008 7:37:27 GMT -5
If you do not want to reaveal your identity, you can write by getting a yahoo email address with a fake name or going the anonymous route.
It's important for her to know your location. So she can see the "BIG PICTURE" of suffering going on all over the globe.
|
|
kmarie
New Member
The Genie is out of the bottle......wishing for a cure in 2008
Posts: 40
|
Post by kmarie on Jan 22, 2008 11:46:09 GMT -5
|
|
|
Post by ridgewalker on Jan 26, 2008 17:10:03 GMT -5
I sent Ms. Weiss the following letter. Have removed personal info for personal protection. I turly wish I could've said more but didn't want to overwhelm her. I have been contacted and re-interviewed by CBS and was contacted the day following the 'announcement' by NBC, the ONLY network for which I have not done media. Have no IDEA where they got my number, but it really doesn't matter I suppose, as long as the media stays HOT on this!
Dear Ms. Weiss:
I have been a Morgellons sufferer for nearing 6 years. My name is ********* and have been formally diagnosed with this disease.
My house was condemned with toxic mold and I was working as a project manager on water treatment plants/sites and rerouting water lines in North Texas for what was deemed 'unsatisfactory water' when I became ill with a succession of strange symptoms. I know that the water in MY bathtub while living there on the City Water system was a 'lime' green and upon asking a large SUV full of engineers why this would BE and didn't this denote LIFE....there was complete silence, except to finally say....that is why the 'changeover' is so urgent....to improve local water quality.
I became TOTALLY disabled in Nov., '03 after attempting to work for nearly a year with parasthesias, short term memory loss, siezures, welting, deep joint and bone pain, loss of visual acuity and depth perception and my previously well known ability to multi-task and do public speaking became 'nil'.
While performing public presentations, I would speak of many things 'tropical', parrots, bananas, boats and islands, while what I THOUGHT I was saying was exactly that....technical information regarding the project. After a siezure where I passed out at a railroad crossing watching the train cars painted with graffiti go by and considering that perhaps the RR companies should allow art on the cars, I passed out completely and awoke to the armrail guards up, horns honking yet could not move until I opened the door, hung my head out (felt a need to get blood to the head) and breathed fresh air. Passing out while driving was so worrisome, even 'tho my boss had provided my BEST assistant to act on my behalf because she knew me well enough to anticipate my needs and understand me, was the catalyst to causing me to discontinue working.
I was tested for everything from HIV to MS, Lupus, Leukemia to ALS, have had numerous health problems, although no infection and during 2004/2005 was more lesion than not. I met, via email, Dr. Randy Wymore of OSU who has been spearheading private research into the matter. We did quite a bit of media together. I was included in a group of patients tested at OSU on several occasions and many of the 'slides' of multicolored fibers that are shown on the media are mine. They were extracted from my body from areas INCHES away from any open sore. And show an unbroken fiber of great length that includes three different distinct color within the same fiber strand. Red, blue and an amber/brown color.
I beg to ask the question that the New York Times posed recently after checking the backgrounds of the 'typical Morgellons patient'....WHY would people who were middle to upper class, typically (almost to a person), Type A, overacheivers, contributors to society, their communities or churches, had idealic lives and were at the peak of both health and career, good family life (until Morgellons entered the picture!).....for me, I had everything I'd ever dreamed about, just waiting on grandchildren for total completion.....commit socio-economic suicide? It simply doesn't make sense.
I, for one, never felt 'bugs' or crawling sensations but deep, deep pain and one test result on my knees reads that there was cartiledge loss so severe to warrant a possible replacement of both knees, at 43 y/o, Osteochondral defect and what appeared to be 'eating' away of the anterior Patellae or backside of my kneecaps. (He actually worded his report in this manner!).
One hospitalization for feeding (I bloated to 182 and then dropped within months to 87 lbs) tubes to be inserted into the heart vein, required testing for blood volume. Most of us show low platelet count. I was nearly 2 pts low on blood and the procedure could not continue until I received the blood. It was a difficult decision, but one that had to be done, it had to happen in order to save my life.
Once I received the infusion I began craving meat (I had acquired a distinct aversion to only quality, organic meat), steaks, rare burger ANYTHING made of pure protein and fats and got a cold. Since we don't typically, as a patient group GET colds I knew it wasn't MY cold but was pleased that I was getting an 'immune response'. I quickly gained 25 lbs. in 3 weeks and was released and have stayed at about 114 lbs ever since although I grow more frail every day. Broken C-1, degenerated Sacral-lumbar, herniation at T7 and 8 and broken ribs. I did NOTHING that I know of to cause this damage and neither I or anyone in my family had broken bones....ever! My bone density tests were normal. I believe the marrow is not producing enough healthy red cells and those that we have are enlarged as shown by bloodwork. Enlarged and mutated.
I previously filmed for Primetime, CNN, CBS, did Rense, Xzone radio, and Canadian Radio, Pieces for the Daily Oklahoman the Oklahoma City paper and top print in Oklahoma. The Gazette an Oklahoma Magazine and several local newspapers and Mags. NBC recently contacted me about doing a new piece and CBS about Dr. Randy Wymore's and my response to the CDC announcement.
Having had many interactions with the previous PR rep from the CDC, Dan Rutz, I know that Dr. Pearson's 'slip of the tongue' about 'when' they began looking into this....saying '02 and changing it to '06 was most probably a true subconscious slip of the tongue. They have most CERTAINLY been aware and had an informal task force pulled together well before '06. I was told by Dan Rutz, CDC PR, during one call that the 'team' was currently travelling in Africa doing research on the project. What could they find in Africa that isn't suppose to be in the U.S.? MANY diseases endemic to the continent, including filarial diseases and the way that the WHO treats such patients is quite different (in med content, potency and length of treatment). They created the ZVED group in '06 which, if you look at the bottom of their 'Unexplained Dermopathy' page they site as their content source. Odd, that everyone in the Zoonotical, Vectorborne, Endemic Disease group was appointed on the same day...I believe April 17, '06 and many of their papers and statements of intent written on the same dates.
When I called in to participate in the live CDC announcement I was told it was too late to que, but that they would be doing weekly reports every week on the same day, run by their Mortality and Morbidity division. I found this statement QUITE alarming. What has THAT to do with what is a supposed 'Dermatological or Delusional' issue?
I have suffered much. My own doctor sees me as being pretty much the same as someone with late stage cancer. But I have done patient advocacy for **********and********* and have spoken to hundreds if not over a thousand now, patients and the suffering they have received at the HANDS of the medical community is ASTOUNDING! We, in Oklahoma have been more fortunate in finding compassionate care because of the prominence of the media surrounding OSU and Dr. Wymore.
I have worked with suicides, arrests, psyche admits, and more than all of those combined, marital and family problems. I also prepared 250 to 300 questions for epimiology studies for both these groups from a 'patient's standpoint' and we are still waiting for those studies.....independent studies, to be completed.
A very good source for information would be Dr. Randy Wymore who holds two Ph.D.s in Pharmacology and Physiology and is Director of Investigation into Morgellons Disease AT OSU. He is difficult to reach by phone. His email is **************and if you have any trouble reaching him I can always reach him on your behalf.
It is ALARMING how patients in other states BESIDES Calif., Fla. and Texas have been downplayed. They have given the CDC the most political pressure that's for sure, but the disease exists on 7 continents, 18 countries and ALL 50 states that we are aware of (to date).
If you have any questions of I can be of further assistance, you can reach me at *********, typically after 12 noon as Morgellons causes acute insomnia, with Endocrinologists seeing a pattern of typical 'daytime' hormones, such as adrenaline and cortisol being pumped at NIGHT and nearly none during the day. This ails sufferers 'across the board'. What many don't seem to understand is that the disease does NOT appear to cross 'all boundaries' but most, if not ALL of the patients I work with are mid to upperclass professionals, fully 1/3 being nurses and doctors, along with teachers, professors and the balance being primarily businessmen and women. At the prime of life and career. Again, mult-tasking, type A, outspoken, community engaged people, who have had their careers, income, homes, health and in many cases, including my own, family ripped away from them.
The disorder itself and the disregard and disrepect from the medical community are difficult enough to handle without losing everything that is dear to these patients and what they have worked so diligently to acquire....their reputations, careers, savings, retirement and support networks. All taken away in one fell swoop of the 'hand of Morgellons Disease'.
I have worked with all of the many Morgellons organizations and many of the researchers. Also, created the MOREJAMM (Morgellons Organizing for Research, Education and Joining Against Medical Mistreatment) which was a festival/educational fundraiser here in OK, Oct, '06. Many patients came from all over the country, but given that the 15 or so bands that I lined up for entertainment, EACH typically drew hundreds to many thousands of fans, it was odd to say the least, that attendees for the most part were limited to researchers, patients, patient organizations, some nurses and microbiology students, at an event that our local cultural mag called 'A gathering of talent that ******* County has never seen before and may never see again'.
I did raise SOME monies for research but when questioned about the success of the venture I defended myself by saying just the amount of people who did NOT show up, typically as followers or 'groupies'' of these bands, leads me to believe they RESEARCHED the disease and were frightened. And if I succeeded in getting thousands of ordinary folks to research this horrendous disabling and disfiguring disorder, then I considered it a success! And it was certainly a success for those who participated and shared the information, love and care of fellow patients and for one weekend were freed from the isolation in which we typically live.
I could go on for a very long time regarding the suffering that we as a patient group have endured and some of the horror stories of these patients, but I'm hoping you will have received many such stories. Still, if I can be of further assistance, feel free to call or email.
Blessings,
********** (Ridgewalker)
|
|
|
Post by nanofairlady on Jan 27, 2008 11:08:47 GMT -5
Ridgewalker, Absolutely the patients need somebody like you...a FUNCTIONAL AND ACTIVE AND ALERT patient who has reached this belief ..WE CAN CHANGE ...
|
|
|
Post by michellenh on Feb 8, 2008 17:34:23 GMT -5
hi kmarie and all, im in NH thats pretty far from california and was on fox news new england in 2002 mystery disease .Ill send her that info! Dont feel bad I have only found a handfull of people near me.But there out there!!!Have not been around treatment plants,im a house cleaner?water damage!and had a fly enter my eye thats where it started for me in my eye then traveled!I also have not been out of this area no traveling
|
|
|
Post by michellenh on Feb 8, 2008 20:56:22 GMT -5
that e-mail did not work
|
|