Disclose all or keep to yourself your health concerns

[Baraka Obam]

Here is a subject I know we all can identify with, the subject of telling everyone we know about our illness and our family's illness or keeping it to ourselves.

Now we all know this is one strange disease so please don't make this about how your not crazy, these questions are not about the merit of your visions or mental health, these questions are about whether or not you would follow the exact same path trying to get a diagnosis.

Question 1, If you had to do this all over again, would you

A. tell everyone you know, your family, friends and people at work?

B. keep your health history and issues to yourself and come up with a alternate diagnosis to keep people placated when they see your open wounds or other issues.

Question 2 If you had to do this all over again, would you

A. Run to the doctor and tell him there are bugs under your skin, some times the bugs come out of your skin, There are fibers that come out of the skin and fight, the government put nano bots under your skin, you have a three eyed fish under your skin or what ever you said the first time you saw the doctors

B. Run to the doctor, keep your cool, tell the doctor you have some extreme itching, bleeding bumps, rash like issues and mention everyone else in the house had tape worms from eating food in Mexico so you can get parasite meds without saying the word BUGS.

What would you do, I gotta wonder how many would do the same exact thing they already did.

This is like a simple easy test, they are question 1 and 2 with a or b answers, its hard to fail this test because you can't fail but you could get better or worse health care.

[MeaganM]

Question 1
A. No
B. Yes

Question 2
A. No (but I still would have made the fighting fibers video )
B. Yes except for the tapeworm part

[Dzana]

telll Everyone.......... Get The Shirt Printed With Morgellons On It........ Put The Warning On Ya Door.......tell Whole World..... Speak To Alive And Dead Ones About It................



Despair Eh Despair.........


YES IM DIEING........ I WANT HELP... i love life i want to live.......why to hide?? only in society rulled by lies they consider this as mental situation......talking about it openly....

tell the truth so Be it....... if i have to face consequence for it then be it......no calculative or mind tricking agendas in order to gain from certain situations such us oh if i let everyone know how they would react or such...... TRUTH needs no camouflaging......if the whole world is going to abandon me for it ......... so be it.....truth will never come onto the surface as long as we ourselves do something to prevent it from surfacing ....UNIVERSE IS WATCHIING YA....... WHETHER U HIDE OR NOT......

[Baraka Obam]

I want to ask you are you getting any help yet???

[scabdraggr]

The truth will affect millions while hiding it only helps the individual that retains it.If something is said enough by enough people then the shame part is eliminated.If Drs hear it a lot then they will react in a diffferent manner.We simply need a collective voice,saying the same things. With this in mind,Last week I had a visit to a new DR that listened about morgellons.They came on board with their interest and methods for treating me.I got good news today after getting back my blood work.It was perfect and no organs doing bad things,yet they realize that something is hurting my body and will continue to search for the cause.It is such a relief to find a dr that listens and is willing to go outside the box to help.Silence in the long run helps no one.

[MeaganM]

Ya know, I am an educated person who has worked my whole adult life in the medical field and I probably would never have believed anyone who described the crazy symptoms of Morgellons until I got it myself. Heck, most my family does think I'm crazy but...

This disease is crazy! This disease does have crazy and unbelievable symptoms. Even having it myself, I read others symptoms and have doubt until I look in the mirror and see my hair not only moving on my head but still moving once it's in the sink on it's own. When I watch the fibers that came out of my body move as if it's alive, I have to double check my sanity. When I see and feel things moving under my skin, I tell myself that it's just nerves until I see something come out of my skin with my own eyes.

As some of you may know, in the beginning, I was ready to check myself into a mental institution. If it weren't for forums like this and people being honest and talking about the weirdness of what they see and experience, (the same things I was seeing and experiencing) I would be there right now.

I agree that talking about such things makes us look crazy but I also believe that not talking about such things would be a disservice to not only new sufferers of Morgellons but to any future research that could possibly help those of us suffering. If we don't keep informing the public and the scientific community about the "fighting fibers" and the "moving hair" than they will never think to look at this disease as a possible pathogen that has somehow invaded the human body. They would just keep looking at it as just another skin issue like eczema and we would all quietly bite our tongues and sit in our houses watching the crazy things happen and wishing we could tell someone. We would never get the treatment and answers that we desperately need.

As crazy as it sounds, I think the truth should be said... loud and clear until someone listens. In reality, what we are describing is not so unrealistic... it's the closed mindset of the Western World that is unrealistic. For hundreds of years there have been new emerging diseases that had unbelievable symptoms and there is such a thing as systemic deep fungal infections that invade the skin tissue, hair follicles, and organs. There is such a thing a parasites invading the human body and causing serious illness. There is such a thing as skin parasites that crawl under the skin. It happens everyday to thousands of people all over the world. Heck, they even have shows about it now (Monsters Inside Me). So why is it crazy and shameful to tell the world something that is not only a possibility, but a reality? The craziness is not us talking about our symptoms, but the fact that doctors and others not experiencing it are too ignorant to even consider such a thing happening to a developed country.

Yes, if I had it to do over again, I would not have mentioned the crazy symptoms to my doctor so I would not be labeled "delusional". But only because it's human nature to avoid drawing unwanted attention to oneself and be called something that you know you're not. It's embarrassing and heart breaking to say the least. I would and will however keep posting the real symptoms of this disease until either someone with a brain (or open mind) realizes that this many people cannot be crazy and comes up with the answers or the cows come home.

[Baraka Obam]

This is not at this moment about waking up the world, that will come in time.

The world will wake up, all of you people are but a tiny dot of the people already afflicted.

The problem right now is getting help for people that are dying NOW, out of their mind NOW, needing to be treated with respect and care NOW.

I am trying to set example for them to get what they need, this is not about us as a whole.

If we want to scream we should be sitting on the capitols steps with big billboards, pictures of the lesions and skin problems, fiber pictures, and a few members afflicted, AND A TEST STATION WITH A NICE LOOKING YOUNG MAN IN A DOCTORS COAT LOOKING AT SKIN AND SALIVA TO TELL OUR STORY.

FREAK OUT 10,000 people in a day.

Our credability IS ON THE LINE every time we go to the doctor, this is about getting help to people that are out of their mind with worry and getting better help than we have gotten and not being labeled DOP so they do not litterally die from being ignored.

Do you know the story of Andy Coyle in England that had so much pain he was going to kill himself, he had already been diagnosed Delusional, he had to stab himself where the pain was to get care, then they put hoim in the loony bin, the bug house.

This is about staying above board, facing the issues and not turning off health care for people that need it, feelings, really, they do not matter to a dead person, we have people , plenty of them, killing themselves because of this just from the mental strain of everyone turning against us when we need them the most.

Anyway this is 2 questions a and b answers.

I am looking for a consensus, Meagan thanks for the answers.

If all of you think new members should run to the doctors and instantly be diagnosed DOP I will not say another word about it, but still I will consider it a crime.

[janedoe]

baraka, i think its gonna be up to the person, how strong they are, how strong their family support system is, etc.
megan, you worked in the healthcare field, you would know better than anybody how to talk to the doctors, what do you suggest? i kinda get the feeling you are stumped, but i think you would be the best person to talk to the docs since you have established creditbility..
i dont know, i dont think i would have done anything different than what i did...

[MeaganM]

Jane, all I can say is that I am stumped. Throughout my career, we always took care of our own. We are usually the worst patients because we diagnose and treat ourselves. But there is one thing that I have learned and that is doctors are mostly about money. The faster we got patients in and out, the better. I worked for only one doctor who would actually sit with a patient for as long as it took and that is a rarity. Sadly, doctors also have preconceived ideas of what they think is going on with a patient within the first 5 minutes of the appointment. As I stated earlier, they also know very little or have limited time to investigate new diseases so they rely on the CDC or others and without funding, others will not bother.

I am seeing a Nurse Practitioner right now. After my first initial freak out of things crawling under my skin episode, I actually apologized to her and told her it must have been a bad reaction to the medication I was prescribed. Even though I have been seeing her every 3 months for 2 yrs, she would rather believe that than actually think outside the box and investigate the possibility that there may be an issue under the skin, nerve related or pathogen. It put her back into her comfort zone of treating known symptoms and we now have a relationship where I ask her for certain prescriptions, tests, or referrals and she gives them to me. Even with this harmonious relationship, without telling her or other specialists exactly what my symptoms are we will never come to a conclusion. I will be treated for the pain and the swallowing issues etc... but, I will never be able to convince her or anyone else to actually look at my skin and hair under a microscope. Without that, I fear that there will never be answers.

So yes, I am one who is afraid to tell my doctor the truth even though I believe it's the only way to get answers. I believe that if I stood my ground and complained all the way to the top and proved that I am not crazy that maybe, just maybe they might take notice. I give credit to those who can do this because it takes courage and I also believe it's up to the individual.

Baraka, you are correct that there are many suffering and sadly committing suicide. I agree that we need to help them as well as ourselves but without the facts, how can we ever do that? If we all went to the doctor and just told them our "not so crazy" symptoms, we would all live in harmony with our doctors like I am right now but nothing would ever be discovered about this disease. How will we ever get answers without letting people know what is going on even if it makes us look crazy.

We all know (even though some won't admit it) that there is some truth to the crazy comments all over the internet about M whether it be bugs, moving things, or lesions (I'm not talking about theories, just symptoms). Telling a doctor only those symptoms that are "normal" will only lead to a "normal" diagnoses like Chronic Fatigue Syndrome, Fibromyalgia, etc... As a diagnosed CFS patient, I can attest to the fact that this diagnosis is not going to treat this disease or my symptoms.

Every article that I have read that was written in the last 5 yrs about Morgellons all state that there have been 10,000 cases reported. So, that is only 10,000 crazy people in a five year period. But, we know that there are many, many more people out there suffering who don't speak up. I don't know if this is because of the crazy label that has been applied to this disease or because of the crazy symptoms that this disease presents but either way, nothing is getting done nor has it changed in 5 yrs. It's already out there. Everyone who has ever heard of Morgellons knows that we believe that we have crazy things happening to us. So, shutting up now and trying to change that in my mind is not going to be very productive. I believe the more people who come out and shout the truth, the more attention this disease will get and then new sufferers will not have to go through what we are going through now. My dream is that someday, my 10yr old son will be able to walk into a doctors office and tell that doctor that he has Morgellons and not be looked at as if he had a third eye. How else is that going to happen but for people to tell the truth whether it be from telling a doctor up front or shouting it on the internet? Going to the capital is a novel idea and I would join anyone who is willing to do it. Unfortunately, that would require people to freely admit that they have this crazy disease and that is the big issue isn't it?

[Baraka Obam]

I was one of the first known cases of this ON THIS SITE, I know where I was, and what most likely was the transmission.

I ran around for awhile yelling and SCREAMING, actually got thrown out of a VA hospital.

What good was that, I needed help of some kind, more than anything at that time I needed care, what did I do, alienated my doctors all.

I did not even have crazy stories to tell, just the facts, I was pissed because they could not hand me the correct silver bullet.

CURE ME YOU BUNCH OF QUACKS.

They all had different B/S stories about how to treat my condition, none worked, QUACKS.

It is different NOW, I knew in time the numbers would grow, but I had no idea the outcome of the disease, the LESIONS.

We are now in number to big to ignore, doctors KNOW, they are seeing to many people with the same situations, the numbers will grow and grow and grow, just like the little EVEREADY BUNNY on TV.

They will be overwhelmed that is our future, right now, these people that need to be taken seriously, the people that are new to this, THEY NEED TO BE HELPED, even if the doctors are going to fail, and they will fail, time and time again.

What I am saying is the more people that come to this site and read I had half a worm body with fly wings, there was a three eye fish looking up at me out of my skin, alien nano bots are eating my brain, well, The people that are hiding our disease and they are hiding it, you can see that very easy, they will have little work to do keeping us on the fringes of medicine, WHY........ BECAUSE WE ARE CRAZY. The longer we are seen by the masses as crazy, the longer we are gonna wait for the itching fiber disease to be addressed. We did get play on the TV before, do you see anything about us anymore, hmmmm NO, WHY, because we are crazy

If you imagine that telling the most wild unbelievable stories will get you to the top of the help list, go for it.

Like I said there is a place called Washington DC and it would not be hard to get seen there, we can all talk at once trying to tell our unbelievable stories , of course we will try to one up each other as not to let our unbelievable story be marginalize. LOL

I think I will dress in my 6 inch heal stiletto biker boots, my buccaneer hat and peter Pan outfit lets see, Meagan you can be SNOW WHITE and let me see who will be the wicked witch of the north, and somebody can be a worm, how many people will come to our Morgellons stand do you think.

I have some questions more, do you think we should hire some people with HIV sores to make it look as gross as possible, or should we appeal to the people that would rather save dogs and cats then people, or should we just have people dressed like the Jehovah Witnesses, clean well dressed, explain the plight and also tell them what to look for, hand out pamphlets