That's a fact Sick11! We sure agree I know. CDC is in "negotiations until July 2008" with Kaiser Permanente Northern CA...then who knows "when" the study will actually begin.
We must continue writing the newspapers about this, and how people of every walk of life, in each and every state (that families) are SUFFERING torturously daily without relief or a doctor to help, and we wait, and wait...and in the meantime, we're getting worse, and more people are contracting this.
a 'long time' meaning "two years until the statute of limitations for malpractice runs out"
what'll be interesting is when CDC issues "the word" to dermatologists to stop DOPing morgellons patients. Begin the two year clock from that time.
More pessimistically, they might just rush out their presumed DOP (based on the fact that lyme-denialist pro "somatization disorder" Kaiser will be studying it). It's not like they asked any questions when the IDSA came out with their Lyme recommendations, even though they had formerly issued warnings/concern over lyme testing being inaccurate. Now they're quiet on the fact that unreliable tests designed not for diagnosis but for tracking the spread of disease are being used to diagnose the disease as per IDSA recommendations. But then again, Lyme is their own disease, so why would they suddenly come clean?
I reckon the timespan before Bush-wacked got his hands on the veto button, was to have begun Nov 07 and have a preliminary milestone May 2008.
Maybe, just maybe Dr. Wymore, SUNY Stony Brook, Harvey, will hit on something. Would prefer to hear from these folks anyway.
You know the CDC-Kaiser most probably would have said something stupid like, "You got exposed to something, treat the symptoms". At least that's what they were telling me a year ago. (Yeah like you can get a bottle of Calladryll and aspirin at Walgreens and it will all go away.!??)
And where are our allies in private research? Now is just as good a time as any to hear something encouraging.
Post by flyawayredbird on Nov 29, 2008 15:57:25 GMT -5
I'm with you Godog....I can't wait to get that apology from some people. Mostly from my husband....and we have been seperated sense July because of Morgellons. He does not believe me...nor my daughter in Montana.
I just want them to say "I'am sorry for not believing you."
I just want to cry....but it's tears of joy. Thank you to all who are making those steps toward the help we so need.
Post by overandover on Jun 26, 2009 13:05:38 GMT -5
A letter I just sent to CDC:
Dear Sirs, I have recently been diagnosed with small cell Lung Cancer, have had Morgellons 4 1/2 years. I had a son Joshua who died Feb.17, 2006 from a Glioblastoma Brain Cancer and he was also a victim of Morgellons Syndrome. My son's suffering from the two horrors was beyond anything any human or creature should suffer. Back then most of the doctors called Morgellons DOP, so the suffering was even more profound for my child to be told he was crazy rather then very ill. I don't think anyone could ever understand the suffering he went through, now I walk the path of Cancer/Morgellons but my doctors so far have put a diagnosis of Morgellons rather then crazy to ease a bit of my pain. They seem to believe me but yet I think I may have a post traumatic stress disorder from the treatment I received from my doctors 4 years ago and I don't feel at ease discussing Morgellons with them. My hair just fell out from Chemotherapy. 2 days ago, all at once, with it came the millions of red, blue, black and clear-white fibers and springtail's, spiders, ants, dog scabies, human or dog lice we, with Morgellons, have come to know. I know losing hair for a woman or man is very tough during chemotherapy and radiation which I start on June 30th along with more chemotherapy, but to have the bugs and fibers coming out of your scalp is a torture beyond words. My beautiful child lived this torture, he did not deserve this pain, there are many children out there with this un-known horror, trying to come to grasp with the disease, parents that don't understand and doctors who still carry the stigma of (It's all in your head) and dump drugs in their poor broken bodies. I have no doubt that Autism, All of the Hyper-Active Disorders and yes now Cancer has something to do with Morgellons, as I'm sure you folks at CDC have by now heard many people with Morgellons are being diagnosed with cancer. Many of us have Chronic Fatigue, Chronic Pain disorder from Neuropathy, MS, and many disorders where we were told by you from CDC through Mr. Dan Rutz were conditions that would not kill us, so maybe you felt no rush to get answers for us.
WE are dying now, please help us I beg you. I have lost so many friends from Morgellons Syndrome, I've lost my son, a young man who could have giving so very much love and kindness to mankind is gone.
I beg you, help us, please tell us what was found in your study, you promised answers for us, now I feel you have really let us down. It was not just a way to keep us quiet for a while was it? Please don't let us down. Thank you for providing this e-mail address for us, please let us know what you have found. Sincerely, Sheila Sue Laws, Gaithersburg, MD
I love you guys, Suebe --------------------------------------------------------------------------------
Post by overandover on Jun 29, 2009 22:04:40 GMT -5
Dear Ruth, Thank you so much, I'm not a well spoken letter writer but I feel like we need to start making some noise. We were promised some answers and as of yet, got nothing. I'm happy to have my doctors now put Diagnosis of Morgellons in my chart, but do wonder if they are doing it to cover butts.
I don't feel at ease talking to them about it. I thought the bugs were a thing of the past, boy was I wrong. I've saved all my hair in baggies and with my new very white clean tub and sink the black spots jumping and falling out of my hair was very easy to see.
I went in to brush my hair, had been losing more then the normal Morg. hair loss we have. On that day every time I put the brush to my head a clump of hair came out so I started just grabbing clumps of my hair and tossing it in the clean, dry sink and clean dry bath tub, then I saw the jumping black specks coming out of my hair so I pick it up and shook it, OH Dear Lord there was so many, most were dead but a few of the springtails were still jumping so for many painful hours I wet the tip of my finger and gently got them out to put in a jar.
I kept my hair to see if more come out, also tons of fibers, I'd also been under the illusion that I no longer had the blue, black or red fibers, only the clear and white one's, boy was I wrong, tons of fibers came out with my hair, it was a very long, heartbreaking day and it took me two days before I could get myself to take pictures of them so that I could tell just what it was.
I start my next four days of chemo. tomorrow, also will be having double dose radiation. Radiation at 9am Then on to chemo. after that for four hours. After chemo. back to radiation for a second time. I will do the radiation for 15 days and not the normal 30 because they want to hit it fast and hard, as do I. My biggest concern is should I take my bug pictures and the little vial of bugs with me. I'm more scared of doing that then the therapy. I just find it so hard to talk with doctors about it now, don't even trust them one ounce even though I have the proof. I fear they'd look at the pictures and comment bull$hit And refuse to put the bugs that look like specks with out magnification, so will they end up with that DOP crap again. I couldn't take it, it would be too much to go there again, I can't.
I plan on posting all my pictures on the picture section here on the board. I've been so tired but I need to get that done.
Thank you Ruth for your love and support. You are such a good, smart, loving, kind lady. Mostly I see you as strength because every time I see your picture and remember back when my skin was just like that, I cry, I cry because I feel the pain you suffer. I cry because none of us deserve this. I cry because I feel like we are the forgotten.
I'm going to try and post a picture on this post tonight and then I'll do the rest later. I'm so tired lately, just pooped.
Thank you so much for your support. I love you, Suebe
prson who agrees w poi.k,hjmv:: LOL @ poi.k,hjmv. . . so far same here. but hopefully not for TOO long
Aug 12, 2019 3:35:04 GMT -5
thinkwithwomen: what are women have health & fitness issues:)- we understood the importance of women health and fitness.we will discuss and share fitness stories and success stories we taken care of women for the age like premature and mature during pregnancy
Nov 22, 2019 6:11:16 GMT -5
DAC: I have it, but it's not real bad for me yet. I do not have any sores on my body, but the stinging and moving under my skin is very bad. I had a friend who died from this. He got it from cutting down a tree by the airport. He
Dec 25, 2019 5:25:05 GMT -5
Aitche: Check out images and videos of trichinosis think you will be
Jan 22, 2020 7:29:49 GMT -5
does lymes make ur bones hurt : does lymes make ur bones hurt when u breath
Apr 6, 2020 18:47:27 GMT -5
guess who guess who: Hello to my old friends. I
Apr 19, 2020 12:00:34 GMT -5
guess who guess who: I run
Apr 19, 2020 12:01:00 GMT -5
guess who guess who: I sure didn't know if people were posting here in 2020.
Apr 19, 2020 12:03:17 GMT -5
Pipster: I've had success w/antifungal remedies...after trying others. The bugs might be fungus drawing them in? GMO's are made with a fungus that bonds the DNA of one species to another. Mild fungal & parasitic infections worsen w/EMF waves...weaken immune system.
May 2, 2020 1:01:44 GMT -5
Pipster: It is fungal related and many natural, antifungal remedies work best. It takes time but don't give up.
May 2, 2020 1:04:14 GMT -5
lydski: I sure miss learning from many of the old members like Toni, Sydney, Abbienormal, Bananny, .
May 20, 2020 0:17:45 GMT -5
carnesmt: Anyone still out there?
Jun 30, 2020 22:08:51 GMT -5
carla MDR: Any of my old friends from Morgellons Disease Research Forum still about ?
Sept 25, 2020 16:28:11 GMT -5
carla MDR: Any of the trolls? Barak .Where are you ?
Sept 25, 2020 16:29:10 GMT -5
carla: if anyone can log in it looks like the personal messages still work x
Sept 25, 2020 17:42:46 GMT -5
Sept 30, 2020 18:31:10 GMT -5
lydski: Check you messages Carla
Oct 28, 2020 15:47:37 GMT -5
LIL debbs: Hi I'm new have a ton of questions as to a board I my be exact like what she said but now can't find it
Oct 28, 2020 23:48:05 GMT -5
Oct 29, 2020 18:44:22 GMT -5
GUEST-333: @pipster Vit-C is now made from GMO MOLD. Yes, EMF waves from all sorts of devices across the frequency bands are playing havoc on the immune system. Additionally, the zinc people are taking is INDUSTRIAL WASTE in supplements. Zinc glycinate is the good
Nov 24, 2020 21:04:31 GMT -5