Just though I’d offer some hope and confirm what others have said, that Metronidazole does work. Just make sure it’s the correct dosage and take at least with one other antibiotic and don’t miss taking these. This is not a forgiving organism.

By the way, I do have a microscope here. Although my brother was hit in the lungs and I was mainly in the small intestine, I had an open lesion on my back for over a year. I’d look at these fibers under a microscope. When I recently checked what my brother has been caughing up, it’s the same fibers. We’ve been living in different states (Florida, and TX) for 7 years.

Both of us believe we’ve had the problems for two to three years with physical manifestations for one to two years.

Metronidazole will take care of it. If you have a reluctant doctor, order from CA. Very cheap there and no prescription required.

This condition does habe mental consequences. If you have this it’s difficult to trust your own thoughts and psychs will be telling you you’re bi-polar, depressed, border-line-personality disorder, obsessive compulsive, ADD type symptoms.

Hey, wait until you’re in a conditiona you KNOW there are parasites roaming your body and everone is labeling you as crazy. Hell, after this I’ll have to go through treatment for post tramatic sress disorder.

Found out I won’t be able to participate because I am not a “member” of kaiser….. oh well, I guess I will have to do something else.

Read the comment on my Doctor and NPR again… It was an example of a Doctor that has seen what I have described and NOT stepped forward (I firmly believe) because of the fear of criticism. Thinking about that I take it back… she may be leaning toward DOP and is afraid I’ll ostracize her for not giving me the diagnosis I crave.

G Ras

When was your doctor on NPR?

Don’t be silly of course not, things are just not that cut and dry. That would assume that 100,000 doctors believe… wouldn’t it? We know that is just not true. But some accounts I have read of Doctors, nurses and medical personnel that have come forward (some of them sufferers) have (you just did it yourself in your last post) been called “Quacks”. That would, it seems to me, stop a percentage from coming forth, would it not?

Look… I can not explain why dermatologists are behaving this way or why the FBI can’t find the fiber in its vast library or any number of the behaviors surrounding this. So I have put my faith and my body in the hands of the Kaiser Permenente Norcal research facility where I will NOT receive treatment, but will do my part in the hope that one may be available after the research is done. Why not take me up on my offer and see this disease for yourself? I can afford it. We could use your voice. I promised myself I would not get into a fruitless dialog here so I am done…. I just wanted to weigh in and get my voice heard. I will however monitor this site to see if there is any brave souls willing to take me up on my offer. Dinners on me!!

You go to the doctor, you tell him you are itching, he’ll do some tests, and tell you he does not know why, but here’s some anti-itch medicine you can try.

You go to the doctor, you tell him there are moving fibers in your skin, he look at them and says they are just moving due to air currents and static electricity and they look like lint.

Where does the delusional part come in? What exactly is this new idea? What exactly does the patient need to do to be diagnosed as delusional, rather than just itching, and making a mistake about where the fibers came from? Can you show me a patient’s account that demonstrates this.

Either there are fibers growing out of your skin, or there are not. 10,000 patients see 100,000 doctors, and all 100,000 doctors are simply “afraid of being ostracized”? Really? Nobody looked at the fibers, they just told the patients they were delusional and did not even treat their itching?

I can’t help but feel that the Doctors that see this (fibers and all) are afraid of being ostracized just like the patients. The real danger as I see it is that by calling it a “quacks’ diagnosis and the patients “delusional”… there will be no attempt to seriously investigate what this is… I mean why bother?

G Ras

Do you guys honestly believe that the sufferers are all delusional and now are suddenly coming forth because they have a common name to attach to this?

No. I believe, as you do, that some people have delusions as part of their medical problems. I think most people who self diagnose with Morgellons have very real sensations of itching – but that the causes of that sensation are highly varied, and include physical and environmental factors.

Morgellons is a long list of symptoms, without any evidence of a common cause.

It should be obvious to you by now that sufferers of this disease are having one hell of a time getting an accurate diagnosis… if they can even get a physician to listen to them.

Have you considered that they are not getting an accurate diagnosis because the doctors don’t know what is wrong with them? I know that sounds a bit odd. But unfortunately not all symptoms can have their cause tracked down and solved. Medicine is not that advanced. Itching is not fully understood and as many as one third of cases of itching never have a cause identified.

Different people have different reactions when told the doctor cannot figure out what is wrong with them. Some would prefer a quack’s “diagnosis” of Morgellons over “we don’t know”, when actually the latter is much more accurate, and will lead to better treatment.

I will play this new fish on the line once and will try to be as succinct as possible. First, as I refuse to let any situation… medical or otherwise get me down.. I try to inject a little humor whenever possible. I firmly believe that laughter is the best medicine.

Thus the “Being a scab picker since childhood” simply meant that I went straight into investigative mode. I am surprised that a learned person would miss the levity and take it at face value… typical. I value my looks and these lesions leave horrifying scars. If I were to continually pick the scabs, I would look like I walked face first into a wood-chipper

Wow!! With a vague description like “clearish fluid” you know that its blood serum…. This is what is so troubling to me, it‘s this kind of knee jerk, shotgun type of diagnosis (or lack of) that has us walking into walls, talking to ourselves.

The clearish fluid in question comes out of the what I describe as the gelatinous skin and a lot of it from the lesion when it is in it’s (for lack of better words) beginning, blister stage… before the lesion is broken. It is an oily substance that does not exhibit any clotting action as you might expect from blood serum. As my scalp is covered with the blisters and the itching is enough to make you contemplate suicide, I have just let loose and scratched (my now shaved noggin) with the abandon of a tick infested, six-legged dog. I noticed an interesting smell on the gunk that I removed from under my fingernails. To my surprise and dismay, it had the odor of “machine oil”, but not quite as strong. “The gunk” is comprised of as near as I can tell… the fibers (in my case black and clear), the opaque gelatinous substance and the oily liquid. Trying to gather as much information as I can between Dr. visits, I rolled the gunk into a BB sized ball and lit it on the end of a large sewing needle. Once lit… it burned by itself until it was a clump of charcoal 1 tenth the original size. I tend to believe that this oil base is what keeps the lesions from healing, but of course I can’t be sure. One thing that I don’t agree with is the fiber in a scab…. they are certainly there… but anything can get into a scab while it is forming and I think it is counter productive to concentrate on that when there are far more interesting and unbelievable things to investigate.

I did not count the “Permethrin” prescription as a treatment because my Doctor thought right from the gate that it was questionable course of action. She told me up front that she had never seen bites like these and doubted what I had was caused by an insect. I guess I sort of forced her to prescribe it because when you feel like your getting chewed up alive and something is crawling on you… you assume it an insect of some sort. She was right… but so far has been only able to tell me what has NOT been happening to me.

Again, shotgun, grabbing at something and blindly running with it… Jeheezuzz…What about this statement “Occasionally getting out of my head” suggests that I take methamphetamine? Or that I am an addict? If you “Occasionally” have a beer are you an alcoholic? Come on now!

This stemmed from an ER Dr. that was convinced that my rapid heartbeat, high blood pressure and lesions were from “meth” use (which I understand now). I begged him to give me a blood test and was refused because he would not administer frivolous tests to prove a point. This man was so sure he was right, he gave my friend (whom I brought for moral support) a print out describing the signs of “meth” abuse and formication. My friend, who now suffers from MY delusion, was incensed at the Dr’s attitude.

It was also a response to something I read here about methamphetamine being the cause for this disease. I don’t agree, but searching back I remembered taking what we used to call “Beans or white crosses” in college. They seemed harmless (at the time) and would allow you to get a lot of studying done and made me sound smarter than I actually was. Yes, I told my Dr. because I don’t know if there are mechanisms that hold the substance in your body… like some cortisones. That was over 30 yrs. ago and although I will admit to trying just about every substance under the sun, have not even put so much as glass of wine in my system for over 20 yrs.

To stop you from running away with another description, please allow me to exchange the word “insane” for “unusual”.

Michael, to answer your Q. I think I may own 3 or 4 black T-shirts and have not worn them in a long time…. Where I would be picking up these oily fibers from is beyond me. The fact that they are inside under the skin tends to make me not want to accept such a simplistic answer… when that answer does not explain the “biting”, “itching’ and “crawling”.

It should be obvious to you by now that sufferers of this disease are having one hell of a time getting an accurate diagnosis… if they can even get a physician to listen to them. Do you guys honestly believe that the sufferers are all delusional and now are suddenly coming forth because they have a common name to attach to this? I suggest you read up on what delusions are in the first place and re-examine the chain of evidence that leads to their diagnosis (DOP or Morgellons). How many have complained about biting, itching and fibers first, before they even heard the term Morgellons? Most, I suspect if my experience is any barometer. Why is this “delusion” more common here in San Francisco than say…. Milwaukee? Being a cynic is healthy, questioning everything and not accepting everything at face value keeps things honest. But blind cynicism is destructive and says a lot more about who you are than you imagine.

I don’t fault you for being cynical, but I guess what pisses me off the most is that one day, when this horrible malady has a medical name and hopefully a cure… and sufferers are exonerated and deemed sane … you and your cute names that you hide behind will disappear into the ether and will never have to face the people you have made feel even smaller for turning to what they thought at the time was the only place left to get help or compassion. You will just move on to the next cause celeb, change your cute names and start in on your next bashing.

I know you will have more to say and there is NO WAY I could get the final word in… so have at it. I have said all I am going to say here. Thank you (my own P.A. jab) for listening.

G Ras

You have no idea the despair you feel when you are told over and over that what you KNOW is happening to you is all in your head or you did it to yourself.

Everyone who’s following this unprecedented phenomenon has a general idea of the power of resistance involved in this dilemma due to the numerous patient accounts. I, personally, don’t like having learned what the outcomes are of allowing such illnesses (as those falling under the “morgellons disease” umbrella), to remain untreated. The pay-off patients get from it doesn’t add up.

Being so inclined as to forfeit everything in hopes that someone will eventually see things as such patients do, quack doctors and nurses have, NATURALLY, seen things as ALL “morgellons” patients wish them to. Each one has designed something to fit every patient unable to escape from being under their various beliefs of what’s wrong.

People are allowed to not treat such illnesses as those falling under the “morgellons disease” umbrella, and that’s just fine, but to do it, while at the same time begging and pleading for recognition and help from it, while talking out the other sides of your mouths that you’ve refused help, interested ONLY in getting someone to see things as you do…

well, excuse me, that adds up to one thing, and one thing only. As a result, according to patient accounts, lots of innocent children, and innocent pets, are having their lives destroyed at the hands of those who are not capable of being responsible for their lives.

This is, all, so wrong…brought to our attention by the patients, of the patients, and for the patients, deceived by their own senses, first and foremost, and deceived by their predators, secondarily.

The world is an ugly place for some people, and I’m so sorry.