Urge the CDC to take action against surging unexplained disease
Public Comments (2,563)
-
Jan 16th, 2015Someone from North Hollywood, CA signed.
Jan 16th, 2015Someone from Goldsboro, NC writes:
This is a miserable conditon. You are isolated trying to make sure not to give it to anyone else. The doctors treat you for everything but do not try to find out what it is. They will not even do the simple tests. I believe it is demodex folliculorum and demodex brevis infestation, but since the symptoms are over the whole body they will not take the time to check. Meanwhile the condition contiues to get worse and will continue to spread to other people, until someone finally gets to the bottom of this. Just because the doctors can't see it with the naked eye does not mean it doesn't exists.Jan 10th, 2015Someone from San Diego, CA writes:
I am suffering with this for the past 4months. I have been to over 5 different doctors. The worst symptoms are in my scalp but they say my scalp is clean and of course is clean, but doesn't mind I feel terrible scratching I have bumps and the worst starts at night making me feel anxiety. The last recommendation is going to get psychiatrist help my primary doctor gave anxiety pills But this is just covering the real problem at this point I don't know what to do. This disease is causing me a lot of labor and personal problems. I feel scare about this disease is getting worst without treatment and security avoiding to spread more this sickness working in a school with more than 1500 students, staff and parents. Please help us to be listened I don't understand how is possible at this point 5 doctors said I'm wrong with my symptoms, they tell me my condition is normal. I don?t want to be rude with them because they are professionals. But I think sometimes they need to use another criteria in order to help and erradicate this disease and, spread more and more this unfortunately infestation and unexplained disease.REPORT COMMENTS
Do you want to report these comments to the moderator for removal? They should be offensive, threatening, a duplicate submission, or spam.
No, CancelJan 10th, 2015Someone from San Diego, CA writes:
I am suffering with this for the past 4months. I have been to over 5 different doctors. The worst symptoms are in my scalp but they say my scalp is clean and of course is clean, but doesn't mind I feel terrible scratching I have bumps and the worst starts at night making me feel anxiety. The last recommendation is going to get psychiatrist help my primary doctor gave anxiety pills But this is just covering the real problem at this point I don't know what to do. This disease is causing me a lot of labor and personal problems. I feel scare about this disease is getting worst without treatment and security avoiding to spread more this sickness working in a school with more than 1500 students, staff and parents. Please help us to be listened I don't understand how is possible at this point 5 doctors said I'm wrong with my symptoms, they tell me my condition is normal. I don?t want to be rude with them because they are professionals. But I think sometimes they need to use another criteria in order to help and erradicate this disease and, spread more and more this unfortunately infestation and unexplained disease.REPORT COMMENTS
Do you want to report these comments to the moderator for removal? They should be offensive, threatening, a duplicate submission, or spam.
No, CancelJan 10th, 2015Someone from San Diego, CA signed.
Jan 9th, 2015Someone from Rhome, TX writes:
I have a hard time even now, when I recall the past 16 months of this Horrible and very scary Illness. I had no clue of the journey they lay in wait for me. I will try to make this as short as possible; there are so many revolting and ghastly details of this illness called Morgellons. My Doctor treated me for scabies; I had huge Lesions all over my head and some on my body. The itching was like nothing I had experienced before, the feeling of bees stinging me all over my body. I had a crawling sensation all over my face and body. I used a lint roller to catch whatever it was tormenting me and sure enough every time black specks and other Fibers type substances were breaking through my skin and Sweat glands. My Husband should win Hubby of the year Award if there is one! He has been my Rock and as I sit here today to try to tell my story the realty of loosing Family and friends breaks my heart. You see, I have always thought myself to be a well balanced and a Stable person, then to find out that those closest to me those you completely trust, don't believe my heartfelt and terrifying words. I have not seen my three Children in over a year and one of my Granddaughters born a year ago only seen pictures on Face book, They are Military and Live in Ft Hood and will be moving again soon. From time to time, I sit and think over my life and try to make sense of this nasty illness and the destruction this has left me in. Adding to everything else Doctor's make it worse, as they look at me and wonder, to be very honest I cannot work this one out and I am not going to try. I have always been highly respected by all of my doctors but this is very different. One doctor was so nasty to me he brought me to tears; he had no compassion and made me feel like I was making the nasty thing up! Left alone in isolation are so many wonderful people, who have lived an honest and Honorable productive life! Where is the help for them? Those who love this country once called the land of the Free. Living in fear today, I pray someone will listen to their stories and give us some hope. I feel like I have been judged, found guilty and put on death row! The best help I have is my Hubby and some wonderful friends on Morgellons Face book. I had never heard of this illness until I goggled my Symptoms and it was "Morgellons" the nightmare had begun. I have worked in the medical field I love to help others. Not long before I became ill, My Hubby and I were volunteering at retirement homes, he plays the Guitar and we both sing, that is what life is about bringing Joy to those who could do with a little. I hope those of you that live in the DFW area will check back on this site. I want to start a support group; I know how lonely this illness can be. The loving and giving of support on FB has helped me through some bad days. Inside my heart, I know a Blessing that will come from a more personably support group, I found so much comfort knowing I was not alone in this Horror story. I kREPORT COMMENTS
Do you want to report these comments to the moderator for removal? They should be offensive, threatening, a duplicate submission, or spam.
No, CancelJan 9th, 2015Someone from Rhome, TX writes:
I have a hard time even now, when I recall the past 16 months of this Horrible and very scary Illness. I had no clue of the journey they lay in wait for me. I will try to make this as short as possible; there are so many revolting and ghastly details of this illness called Morgellons. My Doctor treated me for scabies; I had huge Lesions all over my head and some on my body. The itching was like nothing I had experienced before, the feeling of bees stinging me all over my body. I had a crawling sensation all over my face and body. I used a lint roller to catch whatever it was tormenting me and sure enough every time black specks and other Fibers type substances were breaking through my skin and Sweat glands. My Husband should win Hubby of the year Award if there is one! He has been my Rock and as I sit here today to try to tell my story the realty of loosing Family and friends breaks my heart. You see, I have always thought myself to be a well balanced and a Stable person, then to find out that those closest to me those you completely trust, don't believe my heartfelt and terrifying words. I have not seen my three Children in over a year and one of my Granddaughters born a year ago only seen pictures on Face book, They are Military and Live in Ft Hood and will be moving again soon. From time to time, I sit and think over my life and try to make sense of this nasty illness and the destruction this has left me in. Adding to everything else Doctor's make it worse, as they look at me and wonder, to be very honest I cannot work this one out and I am not going to try. I have always been highly respected by all of my doctors but this is very different. One doctor was so nasty to me he brought me to tears; he had no compassion and made me feel like I was making the nasty thing up! Left alone in isolation are so many wonderful people, who have lived an honest and Honorable productive life! Where is the help for them? Those who love this country once called the land of the Free. Living in fear today, I pray someone will listen to their stories and give us some hope. I feel like I have been judged, found guilty and put on death row! The best help I have is my Hubby and some wonderful friends on Morgellons Face book. I had never heard of this illness until I goggled my Symptoms and it was "Morgellons" the nightmare had begun. I have worked in the medical field I love to help others. Not long before I became ill, My Hubby and I were volunteering at retirement homes, he plays the Guitar and we both sing, that is what life is about bringing Joy to those who could do with a little. I hope those of you that live in the DFW area will check back on this site. I want to start a support group; I know how lonely this illness can be. The loving and giving of support on FB has helped me through some bad days. Inside my heart, I know a Blessing that will come from a more personably support group, I found so much comfort knowing I was not alone in this Horror story. I kREPORT COMMENTS
Do you want to report these comments to the moderator for removal? They should be offensive, threatening, a duplicate submission, or spam.
No, CancelJan 9th, 2015Someone from Rhome, TX writes:
My wife is suffering with this for the past 16 months.We have been to over 4 different doctors.Still no help.We have tried so many detox baths and anything else we can find on line to try to help her But still she suffers We are both retired and have lost our life savings from this unknown illness But the worst thing is we have lost family and friends who turn there backs on us and think we are unstable. I don't have this but I see what it is doing to my wife I would not believe it if I didn't see it with my own eyes. If there is anyone in the Dallas Ft. worth area who would be interested in starting a support group for people who suffer from this as well as there other family members .We all need to get together and share ideas and help each other . There are some very good groups on Facebook My wife has found new friends and support there from people all around the world Doctors can't help us and the government won't So we have to help each other David Fagan Rhome TX.REPORT COMMENTS
Do you want to report these comments to the moderator for removal? They should be offensive, threatening, a duplicate submission, or spam.
No, CancelJan 9th, 2015Someone from Hastings, MN signed.
REPORT COMMENTS
Do you want to report these comments to the moderator for removal? They should be offensive, threatening, a duplicate submission, or spam.
No, CancelJan 4th, 2015Someone from Syracuse, NY writes:
This is ridiculous that no one is doing anything about this. I have been dealing with this same issue for 6 months I have list 30 lbs due to this. People are right nothing will be done about this until it happens to someone higher up and they see what it does to your life.REPORT COMMENTS
Do you want to report these comments to the moderator for removal? They should be offensive, threatening, a duplicate submission, or spam.
No, CancelJan 2nd, 2015Someone from Norfolk, VA writes:
I just moved into a new apartment a few months ago.I notice that when we sit on the carpet something was bitting us.The carpet is said to be new.I have 4 babies 1,3,4,and 6.And all of us are itching and coverd in small red bumps,blusters around our lower risk,and one have purple scale looking bumps on her back.I dont know what its but it makes my 4 year old cry day and nite, she is even losing weight cause she dont want to eat, because she need to scratch. Me I'm bout to loose it .The apartment manager sent someone here from pest control, but they only looked for bed bugs.If I tell you something is bitting us and we don't see them ,but you can feel them one you.Then that would tell you that it must be some type of bitting mite.Yet an still nothing has been done and we dont habe any furniture in her ,and I dont think I want to buy any until what ever it is stop eating us alive.So I feel everybody pain Something needs to be done.....REPORT COMMENTS
Do you want to report these comments to the moderator for removal? They should be offensive, threatening, a duplicate submission, or spam.
No, CancelJan 1st, 2015Someone from Conyers, GA writes:
I have been suffering with this for probably a year now. I didn't realize what it was. I went to 2 dermatologists due to the skin condition and then an infectious disease doctor where I was told I had staph. I was put on medications and my symptoms seemed to clear up. That only lasted a short period of time. I knew everything else I was experiencing-the joint pains, black specks coming out of my skin, the intense crawling and itching where I can't even sleep was not just due to staph infection. One night after months of researching on the internet, I googled "feels like I have thorns in my skin." The first thing google brought up was Morgellons. I was floored reading and looking at the pictures about this disease. It was exactly everything I had been going through. Reading stories of other suffers; I could have written it. I had missed so much work and my family was suffering since I was always locked behind closed doors. I didn't want anyone to see me and I didn't go anywhere. I can't even count the number of things I have missed with my 7 year old daughter and I have been constantly letting her down. So, I then turned to family for help again. My husband and parents said I was having issues from my medication I was on, Adderall. I went back for a follow up appointment to the infectious disease doctor who said the same thing. When I mentioned Morgellons, he hadn't heard about it and looked on the internet right then while in his office. He said it was delusional parasites. He said he didn't see anything I was describing. Yet, I had over 20-30 pics of all the crap that was coming out of my skin. I then chose to listen and I went to my Psychiatrist. She took me off the Adderall and I was given anxiety medicine as well as Benadryl and I was basically in a sleep coma for 72 hours. It seemed to help and I was hopeful. I thought this could be why and I was ok. I was wrong. Less than a week ago all my symptoms started to come back. Now the skin lesions which are the worst. The itching is so bad I get 0 sleep. My family doesn't think Moregllons exists because the CDC says so and therefore I have 0 support and have never felt so alone. I fear my husband will leave me and I will lose my daughter because of this. How can the government and doctors say this doesn't exist when all of us have the same symptoms??!!? I am begging the government to please step up and the CDC to finally realize this is not delusional. I am scared this is going to kill me but have faith in God that I will one day be ok.REPORT COMMENTS
Do you want to report these comments to the moderator for removal? They should be offensive, threatening, a duplicate submission, or spam.
No, CancelDec 31st, 2014Someone from Chicago, IL writes:
2.5 years now. It was worse in the beginning and I control it now with animal meds so to look at me you can't tell, but I can't kill it all the way. My back and face get attacked most and I always have at least 3 painful itchy huge bites at any time. Doctors have washed their hands. I've lost a relationship from this, ironically he has it too and moved on to spread it to someone else. On my face, when the bites start to heal and dried skin sort of scabs over them. If I pull off that dried skin and put it in water, it will literally thrash about, spin, pop, zip around as if it is a live thing. Is this normal for skin flakes or scabs to do this in water? Again, no answers, docs wash their hands of our suffering.REPORT COMMENTS
Do you want to report these comments to the moderator for removal? They should be offensive, threatening, a duplicate submission, or spam.
No, CancelDec 30th, 2014Someone from Forney, TX signed.
Dec 29th, 2014Someone from New York, NY signed.
Dec 18th, 2014Someone from Waukesha, WI writes:
As a home health provider for the elderly, and being in my late 70's myself, I feel I am forced to quit working, as I may spread this terrible problem to someone else and bring it to their home, as it probably happened to me. I was told twice by my former doctor that I should "wait" and see! Along with that was a very demeaning comment, " Those people online sound pretty crazy!" What ever happened to "Do no harm?"REPORT COMMENTS
Do you want to report these comments to the moderator for removal? They should be offensive, threatening, a duplicate submission, or spam.
No, CancelDec 15th, 2014Someone from Plano, TX writes:
Living the nightmare for over eight months. Four months pregnant now and four other children suffering. Only God is keeping me sane.REPORT COMMENTS
Do you want to report these comments to the moderator for removal? They should be offensive, threatening, a duplicate submission, or spam.
No, CancelDec 15th, 2014Someone from Jordan, NY writes:
For almost three months now my family and pets have been dealing with what we think is some type of bird mite. We think we got it from a stray cat that we took in. All the pets and family are all on ivermectin now. It seems to be helping a little. We've seen doctors, called CDC, and our Vet told she'd never heard of such a mite. I had to shave my head it is so bad. This has literally turned our life upside down.REPORT COMMENTS
Do you want to report these comments to the moderator for removal? They should be offensive, threatening, a duplicate submission, or spam.
No, CancelDec 14th, 2014Someone from Tariffville, CT signed.
Dec 9th, 2014Someone from Leslie, MO signed.
Dec 7th, 2014Someone from Banning, CA signed.
Nov 30th, 2014Someone from Washington, DC signed.
Nov 29th, 2014Someone from Portland, ME writes:
Dear Congress, I am one of a growing population of persons plagued by this mysterious disease. I believe the medical community and CDC would like to help but may not have the knowledge to address the impact on health from international travelers and environmental changes. Please help us regain our lives and health. With deep appreciation, Elizabeth (Portland, ME)REPORT COMMENTS
Do you want to report these comments to the moderator for removal? They should be offensive, threatening, a duplicate submission, or spam.
No, CancelNov 29th, 2014Someone from Tell City, IN signed.
Nov 28th, 2014Someone from Colorado Springs, CO writes:
Living this nightmare since July. Please Help!REPORT COMMENTS
Do you want to report these comments to the moderator for removal? They should be offensive, threatening, a duplicate submission, or spam.
No, CancelNov 28th, 2014Someone from Sterling, VA writes:
Ive never heard of such a thing, but I guess thats hows epidemics start. My friend has this and I haven't seen her in over a year. There has to be a solution?REPORT COMMENTS
Do you want to report these comments to the moderator for removal? They should be offensive, threatening, a duplicate submission, or spam.
No, CancelNov 27th, 2014Someone from Denver, CO signed.
Nov 27th, 2014Someone from Okeechobee, FL signed.
Nov 26th, 2014Someone from Falls Church, VA signed.
Nov 26th, 2014Someone from Herndon, VA signed.
Nov 24th, 2014Someone from Seattle, WA signed.
Nov 23rd, 2014Someone from Beverly Hills, CA writes:
In Southern California. Met w doctors who barely examined me but told me it was my scratching leaving the lesions. I have tried remedies for lice, scabies, fleas you name it! I have lost a lot of hair. This is a serious - I mean SERIOUSLY- aggressive attack. I have bathed in alfalfa powder and Epsom salt which cause millions of these things to come out of my skin and scalp and into the water. I can see them!!! But they always return or never quite all go away and repopulate. The sensation is maddening. I once used glue to remove a chigger when I was young so I tried that on a lump on my scalp. About 15 mins later there was a rush and tightening feeling. I brushed the area and was horrified when probably thousands of large lint debris fell into a pile in front of me. i also notice large lint/dust floating in the air and when they land on my skin it feels like a pin stick me that was on fire. I have literally pulled these things from my skin (and for an alternative description it looks like a soft nail clipping). This is a serious and real thing. There has to be a simple explanation and treatment for this. Fleas, chiggers, lice and scabies all have names and remedies. If the doctors want to deny treatment to me bc of their unproven and uneducated hunch of delusional parasitosis (which is so, so rare) bc it's silly to think there's a possibility of parasites, then how do they explain the dozens of human parasites that are proven already as I enumerated? The medical community makes it out like it's beyond the realm of possibility when human parasites exist. What's so hard about that? It seems simply, ppl are describing these same symptoms but no study or second look is given. I have samples of these things on roller tape that I took from my own skin. Cdc- get on board. What's the harm in properly examining these cases of medical phenomenon. It's not like we're asking you to acknowledge "gay cancer" again (aids) which you denied too.REPORT COMMENTS
Do you want to report these comments to the moderator for removal? They should be offensive, threatening, a duplicate submission, or spam.
No, CancelNov 21st, 2014Someone from Newburyport, MA signed.
Nov 16th, 2014Someone from New Orleans, LA writes:
I lost my entire post due to my desire to be thorough. At this point I'm just too tired to re-write everything that I wanted to express about this nightmare. I need to get back to fighting the battle- it's bad enough for an adult. When you can see your child and your (pet) child at risk it's even more heart-wrenching. To realize a lifetime was wasted on trying to prove yourself to others who knew the real truth all along; to be recovering from those things; and then to end up with this illness..... I am surviving by the Grace and Love of my Savior Jesus Christ. Without Him I believe this would have been the final blow and for all I know-as this progresses - it still may be the death of me. Please Help Us All!!!REPORT COMMENTS
Do you want to report these comments to the moderator for removal? They should be offensive, threatening, a duplicate submission, or spam.
No, CancelNov 16th, 2014Someone from New Orleans, LA writes:
I lost my entire post due to my desire to be thorough. At this point I'm just too tired to re-write everything that I wanted to express about this nightmare. I need to get back to fighting the battle- it's bad enough for an adult. When you can see your child and your (pet) child at risk it's even more heart-wrenching. To realize a lifetime was wasted on trying to prove yourself to others who knew the real truth all along; to be recovering from those things; and then to end up with this illness..... I am surviving by the Grace and Love of my Savior Jesus Christ. Without Him I believe this would have been the final blow and for all I know-as this progresses - it still may be the death of me. Please Help Us All!!!REPORT COMMENTS
Do you want to report these comments to the moderator for removal? They should be offensive, threatening, a duplicate submission, or spam.
No, CancelNov 14th, 2014Someone from Neosho, MO writes:
Yep, this is pretty messed up... speaking from experience. This is a real condition.REPORT COMMENTS
Do you want to report these comments to the moderator for removal? They should be offensive, threatening, a duplicate submission, or spam.
No, CancelNov 14th, 2014Someone from Denton, TX writes:
Had bird mites for 5 months now, lost everything.REPORT COMMENTS
Do you want to report these comments to the moderator for removal? They should be offensive, threatening, a duplicate submission, or spam.
No, CancelREPORT COMMENTS
Do you want to report these comments to the moderator for removal? They should be offensive, threatening, a duplicate submission, or spam.
No, Cancel
Do you want to report these comments to the moderator for removal? They should be offensive, threatening, a duplicate submission, or spam.