How many people have Morgellons?

Smileykins says:

Oh, answer: Zero

tallcotton says:

Oh, how many people have Morgellons? None, unless it’s considered a mental disorder.

tallcotton says:

How can these unknown fibers be described?

The unknown fibers associated with skin lesions can be described as coenocytic (aseptate), smooth-walled, branching, filamentous objects. The fibers have been analyzed by FTIR (Fourier Transform Infrared Spectroscopy) and have tentatively been identified as cellulose.

(Isn’t that odd. The fibers pictured here, on the Symptoms Page of the Morgellons Research Foundation website, used to be labeled as Drew’s Hair before the website was updated. Parenthetical by Tall Cotton).

The elongated fibers are often twisted into balls or what appear to be bundles of fibers, as they grow within the skin. Many people refer to these bundles as fiber balls, fuzz balls, or lint balls. The fibers are clearly hyphae-like structures, and yet, do not fall within the description of known hyphae or pseudohyphae. The fibers are most often white, but are also consistently seen as blue, black, and rarely red.

http://morgellons.org/symptoms.html

pappasmurf says:

Please bear with me, it’s been over thirty years.

Body dysmorphic disease is a psychological condition.

When the sufferer “picks”, they create conditions for suprainfection.

Damaged hair follicles create ingrown hairs.

Now the good part! ACTINO (RAY) MYCOSIS (FUNGUS)

The normal flora of the mouth includes Actinomycoses sp. (ie A. israelii), an anaerobic bacteria which forms filaments(hyphae) and if there is an abcess under the tooth, a sinus may form that can erupt on the closest part (ie jaw) or far distant from the original site of infection.

In cattle a piece of barbed wire can cause ‘lumpy jaw’ A. bovis.

The unique ability of these organisms to form calcium oxalate around itself

(sulphur granules). protects it from blood borne antibodies and antibiotics.

(as with mycobacteria in the lung).

The ingrown hairs and infected sebaceous glands resemble insect structures.

This is not just Actinomycoses; but also a number of other organisms including Bacillus concommitans, aerobic opportunists etc.

Analysis is extremely difficult because the specimen obtained by biopsy

(swabs are useless, Merck Manual) are usually negative.

Because of the slow growth of these bacteria, like TB and leprosy, long term
treatment is required.

A ‘cocktail’ of amoxicillin, Cephalexin (a 1st generation cephalosporin) and Metronidazole is the preferred combination oral treatment.

Hyperbaric treatment should be used in conjunction.

Without surgical treatment of the dental problem, symptoms resume upon cessation of ab treatment.

The fibres are hairs, damaged hair and follicles and hyphae.

The calcium oxalate content could be analyzed.

pappasmurf says:

Let me proceed

intravenous drug users often experience “crawling under the skin”

Their arms deteriorate, could this too be actinomycosis?

Or is it all in their head, I mean arms?

tallcotton says:

Actinomcetes are called “higher bacteria” because they are fungi-like. They are filamentous, but, in my opinion, the filaments of actinomycetes don’t match the micrographs which I have seen presented by Morgellons believers. As you probably know, the “sulphur granules” aren’t granules of sulfur, but actinomycete colonies. At one time I believed that Morgellons was caused by Actinomyces israelii and his symbiotic team. I don’t believe that now. I believe it was Metta that was tested for Actinomycosis. If I’m not mistaken that test came back negative. Of course, she is only one of the Morgellons believers.

In my opinion, the “Morgies” have a variety of health problems, many of which are psychiatric in nature. The Morgellons Research Foundation has recommended the Morgellons Forum at http://www.lymebusters.com. I know that the people that use that forum are only a portion of the Morgellons believers, but it doesn’t take but a single visit to that website to see an assortment of psychiatric problems. In my opinion, those issues need to be dealt with first. I do not believe there is a “Morgellons Disease”.

Tall Cotton

tallcotton says:

One of the primary symptoms of Delusions of Parasitosis (DOP) is not believing the diagnosis.

Michael says:

papasmurf, your “dental abscess” description is an interesting hypothesis – but what exactly is it mean to provide an explanation for? Do you know of any evidence that fits your theory?

I’m assuming you mean it to be an explanation for “Morgellons”, but what are you basing this on? What grounds to you have for needing such a complex theory, when much simpler theories fit the observable facts?

Smileykins says:

I think pappasmurf appears to have had some type of experience with DOP from over 30 years ago, that falls into the same category as the type Tall Cotton and Smileykins had.

3. Secondary Organic Delusional Parasitosis where there is an underlying physical illness present

(if you click on the name “Smileykins” pappasmurf, you can read how we were both affected at one time)

pappasmurf says:

Empirical – the proof of the pudding is in the eating

Charles

pappasmurf says:

I’m on mind & muscle forum too

How can I transfer what I say in one to another forum?

I’m such a newbie with brainfog

Charles

tallcotton says:

Papasmurf,

The only method I know of, to transfer posted material from one site to another is by copying and pasting. You’re probably familiar with how to do that. But in case you aren’t, you can go to the other site, and while left clicking on your message, hilight whatever you want to transfer. Then right click on the hilighted portion, and click copy. Then come to the “Leave a Reply” block on the Blog, and click “paste”.

Tall Cotton

pappasmurf says:

diagnosed by their doctors as delusional. Researchers found collembolan, a microscopic bug, in 18 of the 20 patients.

Collembola feed on algae, bacteria and decaying matter. They thrive in wet or damp surroundings, and can be found under leaky kitchen or bathroom sinks, swimming pools, and the soil of potted plants.

I am a 59 yr old male who has been a “sufferer” for over 30 yrs.

I would like to make three (3) points:

1. Actinomyces is an anaerobic organism, a bacteria; but not quite a fungus, that is a normal inhabitant of the mouth.

Cattle who have sustained injury (ie ingesting barbed wire) to their mouth can develop Actinomycoses
known as lumpy jaw

This organism like TB and leprosy requires very long treatment with antibiotics [ab](parenteral, then oral penicillin). This is because it is extremely slow growing and walls itself off from attack with calcium oxalate
(‘sulphur’ granules). Possibly intermittant ab treatment allowing a growth phase before resuming ab treatment will be more effective.

Since the advent of penicillin this disease has been much rarer as a result of prophalactic treatment during and after dental surgery.

2. There are other bacteria associated with this disease both aerobic (ie Staph) and anaeobic.

One known as Bacillus concomittans is often found and may contribute to the pathogenicity.

It is extremely likely that if and when the dental infection proceeds outward to the skin, a tract or fistula is created with these mixed population of fungal-like bacteria. These have been noted from closeby on the jaw to many more distant areas.

3. The possibility of suprainfection with an insect or protoinsect is strong as the original infection has broken through the skins’ normal defenses.
The normal food of Collumbella is fungi from leaf litter.

Elimination of the insects with lindane does not cure the condition

Elimination of the actinomyces with long term ab treatment is not effective until the original source of infection (ie removal of the tooth, if root canal surgery is not effective).

Any way of boosting the immune system (removal of stress in one’s life, acupuncture and tai chi) shows dramatic improvement.

Hyperbaric (O2 under pressure) treatment is an accepted way of treating actinomycosis, and should be employed to hasten recovery.

There is also a psychological factor to this disease. Aside from the trauma of “losing face” and making one dread to appear in public the constant OCD of picking excaberates the spread. Therfore the approach must be two pronged.

Any comments?

Charles

——————–
Determine that the thing can and shall be done
and we shall find the way A. Lincoln

we don’t have to right & left click, Thanks Tall Cotton

tallcotton says:

The prevalence of actinomycosis in the US is 1 in 300, 000. It’s considered to be pretty rare, probably rarer than the number of cases per capita of Morgellons diagnosed by the Morgellons Research Foundation. Actinomycosis is also believed to develop in men more than women by a 3:1 ratio. It seems like Morgellons effects women more than men.

I agree that other bacteria are also involved in actinomycosis to increase the pathogenicity of the actinomycetes and cause coinfections. There’s usually 5-10 other species of bacteria present. Actinomycosis usually develops after surgery, particulary dental surgery, or when there’s a break in the integrity of mucous membranes. I know that actinomycosis cultures are slow growing, but is actinomycosis and these coinfections hard to diagnose?

I think a bigger problem with “Morgellons” patients is Methicillin Resistant Staphylococcus aureus (MRSA) due to excoriation and overuse of antibiotics. I think it’s obvious that Morgellons is a grand assortment of known diseases and skin problems. Some have been diagnosed with eczema, allergies, sarcoidosis, lyme disease, and an assortment of other problems. It’s also obvious that many “morgies” have psychiatric and psycholocical problems.

I believe that if one other diagnose was made synonymous with “Morgellons” it would be Delusions of Parasitosis (DOP). In my opinion, that seems to be the real issue with the most people. As you probably know, there are catagories of DOP. Its true definition is much broader in scope than most people realize. I’m not saying, however, that you are DOP, or that you have ever been. Nor am I saying that you don’t have, or that you haven’t had actinomycosis.

I’m sorry I’m not able to help out with the MacIntosh computer. I don’t know a thing about them. I tried Googling it for you, but I didn’t really understand what I was reading. I’ve never used a MacIntosh computer.

Tall Cotton

Michael says:

Papasmurf, what you describe may well explain what you have – but there is no reason to extrapolate this to all the Morgellons believers. They all have wildly differing symptoms, and there are many different diseases and conditions that can explain those symptoms. Each person needs treating individually based one their individual symptoms.

Grouping everyone together as having the same “thing” is ultimately harmful to their health.

Michael says:

Attempts to address this in a scientific manner are always met with hostility and evasion. Either “duh, of course we tried that”, or “we don’t have the resources to try that”, or “People are suffering, and you want them to perform experiments, that’s the CDC’s job!”, or “who are you!?”, or even “I don’t currently have any fibers emerging from my skin, but I did last year”.

Notice how the examinations on CNN found NOTHING. Just one blue fiber that was obviously just a bit of lint. And CNN spent two days with them, and the OSU lab had magnifying video cameras. Yet the evidence they produced was just a bit of blue lint.

I’m quite amazed sometimes, at the lack of evidence.

JeeezeLouise says:

Michael said:

“People are suffering, and you want them to perform experiments, that’s the CDC’s job!”

Yes, but they are constantly experimenting on their own bodies, with some pretty dangerous stuff.

The first time I came to your blog, I read that Ginger Savely said “People are suffering, we can’t waste time on clinical trials” (paraphrased)

Now, wait a second. People suffer from cancer, from AIDS, from MS and thousands of other diseases. Drugs are developed and brought to market through CLINICAL TRIALS. That’s why AIDS and cancer are no longer necessarily death sentences. That’s why MS no longer means a wheelchair.

Does Savely believe it is better to allow folks to try horrendously dangerous “treatments” in their own homes, outside the clinic? And with no scientific controls? So what if a single Morgellons patient finds a ‘cure’, without scientific controls no doctor in his right mind would prescribe.

By the way, the colloidal silver ‘cure’? It causes systemic argyria. I will not be surprised to see “grey skin” added to the list of Morgellons symptoms.

http://dermatology.cdlib.org/111/case_reports/argyria/wadhera.html

http://homepages.together.net/~rjstan/index.html

Smileykins says:

I’m sorry, I doubt that my previous comments made any sense. To anyone that’s never had delusions like their’s, it wouldnt.

So far, we have seen photos of lots of crud, consisting of dead cellular components and environmental crap.

These people believe, that since all the other people around the globe who signed up for this “morgellons disease” (remember, 95% DOP), all have the same types of skin symptoms, body sensations, and delusions that they have, which causes them to collect their “specimens” for comparison, and they match up fairly well, that it means something.

Nothing will ever be caught on film. If anything would happen to be, static electricity is what is causing the movements.

JeeezeLouise says:

Oh. My. God.

They’re going for the silver.

http://lymebusters.proboards39.com/index.cgi?board=rash&action=display&thread=1151596720

pappasmurf says:

Papasmurf, what you describe may well explain what you have – but there is no reason to extrapolate this to all the Morgellons believers. They all have wildly differing symptoms, and there are many different diseases and conditions that can explain those symptoms. Each person needs treating individually based one their individual symptoms.

Grouping everyone together as having the same “thing” is ultimately harmful to their health.

This is the basis of chinese traditional medicine

Western medicine groups for “cure-alls”

The first thing is that everyone has an anxiety problem with this disease –

Who wouldn’t “losing face”.

Secondly, my theory is that in addition to treating the psychological OCD

BDD; there is a simple explanation for the effects and complications that we

are seeing.

Actinomycosis is rare because of its penicillin sensitivity and prophalactic use during and after dental surgery.

In my case, it was an infected wisdom tooth socket that started the ball rolling.

It was more than eighteen months b4 it got anywhere near bad.

It was thirty years b4 I figured out what was happening.

Guys, if only one tenth of the people that are morgies have what I have

Wouldn’t it be better for them?

To test my theory, there is a PCR technique for identifing Actinomycosis.

However, the dentists can’t see it on their x-rays and the sonogrammes can’t

penetrate the jawbone/

My CT scan in 2002 showed a diffuse network – possibly the calcium oxalate.

Don’t do the silver!

Love Charles

tallcotton says:

And the CDC will likely make a blanket confirmation of those diagnoses, along with other diagnoses, some of which will have already been received and ignored. In my opinion, it isn’t likely that the CDC will discover any new diseases or establish any new protocols. I think the most we can hope for is that there will be a better understanding of some of the mental disorders. It isn’t likely that this will shake very many of the Morgies out of their delusions or their destructive behavioral patterns. I don’t see much hope for these people until their psychiatric problems are dealt with. If there’s a large number of these people across America and around the world, hopefully the membership of lymebusters isn’t an accurate representation of the world group. Hopefully, there are at least some individuals on the outer periphery that will come to their senses.

Smileykins says:

NINETY FIVE PERCENT DOP

How did “morgellons disease” happen?

A delusional, obsessive mother was too far gone to know that when her toddler said it felt like bugs were crawling on his itchy skin that he was not speaking literally. She kept obsessing with her microscope, exactly like these people we all read about.

There is not anything to this, other than DOP patients who will not take treatment for it. Yeah, they have other health issues, but they’re so fucked in the head, they think some mysterious “morgellons pathogen” has caused every ill they have.

tallcotton says:

Papasmurf,

Were you diagnosed by a doctor with Actinomycosis, or is this a self-diagnosis? Did you take the PCR test and test positive?

Tall Cotton

aherah says:

Hi Pappasmurf, I appreciate your input. Do you believe that you have the same disease that others have named Morgellons? If so, what symptoms do you have?

Thank you,
Aherah

Smileykins says:

Hey Pappasmurf! It’s great seeing you here. Thanks, and, hehe, Happy Independence Day to you. You possess a refreshingly rare excellence of courage. Have you ever tried any herbals with antibiotic properties? Goldenseal is one of my favorites to use short term.

Smileykins says:

Gee, I realized I must become paranoid and defensive, just now, and defend myself before an onslaught of attacks on my words occurs on this Independence Day.

When I said, “At the risk of angering others (as I so often do, when in the presence of particular personality types)…” I have no problems in my relationships with people in real life. I was referring strictly to the topic we’re on. As you have probably noticed, we’ve had a little difficulty in communications here.

pappasmurf says:

OK i’ll try to figure this one out too.

I have pictures from last year and if I get my camera fixed you can see how much improvement there has been.

As far as herbals go, tea tree oil is really the only thing that I have found effective topically.

However, I did use a chinese remedy which includes coin grass to cure my
gallstones last year. There are over 50,000 cholecystectomies every year.

My acupuncturist told me the painful meridian was my gallbladder. My physician sent me for ultrasound revealing an 1 cm stone. The tea taken
morning and evening relived my pain in days and within 4 months another ultrasound showed that it was gone. Much of my tiredness that I had been attributing to my face was gone too.

pappasmurf says:

It’s a symptom of illness, indicating (as all symptoms do), that something is wrong somewhere.

That’s it!

Now I believe that there is a simple explanation for some, not all cases.

Persons with BDD that pick their face and intravenous drug users stand the

good chance of becoming infected with Actinomycosis (along with other

microbes). Oral-cutaneous fistulas from dental infections are well recognized

to often contain Actinomyces sp..

Actinomyces are slow growing and without major pathological effects even to

the extent that they attack the nerves which cause pain signals to be sent to

the brain and cause neuroanathesia. Persons with depressed immune

function, whether through AIDS, stress, drug use are more suseceptible.

Smokers, with lowered blood O2 levels because of CO would be at greater

risk of anaerobic infection.

If common insects that live on leaf litter fungi have adapted to be parasitic,

not on the human host; but rather on the Actinomyces and probably several

other associated bacteria that impair the body’s response to it; wouldn’t it

prove a possible, if not fertile ground for multiplication.

As the human becomes more impaired by the infection, personal and

environmental hygiene becomes more neglected.

I
Now to Lymes. Borrelia was well recognized even in the dark ages that I

attended university and was known as well to be tick bourne. One of the

symptoms of borrelia infection is “coupe de sabre”

One lady’s fight to explain why she and her family was so sick, led to the

medical profession recognizing that perhaps Borrelia infections were more

common than originally thought.

As with Heliobacter and ulcers, medical knowledge is in a state of constant

evolution. No one, especially doctors, likes to be wrong, mistakened or

misled. Galileo recanted, Louis Pasteur did not.

pappasmurf says:

I don’t know? You tell me.

I want to pursue this idea to see if and when there are others like me who

can be treated not only for their BDD, which obviously comes first; but also

for the conditions, which they might have caused themselves, but nevertheless

are real. My slow journey to recovery has hit another blip; but I would much

rather talk with you, than rabid morgies. You might not agree.

Smileykins says:

I think I’d better add a footnote, since recently discovering some truths of things that have been adopted, and nurtured, about me. I only state what I think and what I know, from my own walk through life. I’ve never tried “saving anyone”, and I’ve never told anyone they were “cursed”. Never have I been a “self-proclaimed savior”. Does that ill-conceived title bother me? I’ve been called worse. Haha!!!

pappasmurf says:

and I have always wanted to save the world ( from itself)

Am I a sav iour or a spend iour?

pappasmurf says:

Yup, I’m delusional – always have been

Like believing that all people need to love one another

That freedom is only a state of mind

pappasmurf says:

Nothing is worth nothing unless it’s free

pappasmurf says:

Now I gotta find out about liver flukes – are they sensitive to penicillin?

pappasmurf says:

Exactly, penicillin doesn’t work.

So if liver flukes play a key role …. why does penicillin work.

Less than one day and already I’m offering to resign from the Lymebusters

Morgellons board.

Smilikins, how could you have stayed so long?

Nevertheless, I know that you all know; that there is no point in preaching to

the deaf. There are none so blind as those who will not see.

My only hope is that I can get in touch with wymore and he can develop a PCR

for Actinomyces and test my theory. I’ve doubled my dose of Prozac!

Charles

Smileykins says:

I’m happy to hear that you’re dancing on sunshine “Smurf-Daddy Charles”.

In my opinion, liver flukes play no role in “morgellons disease”. Either a person “has” liver flukes, or they don’t. If they do, they do, and if they don’t, they have delusional parasitosis.

If “morgellons disease” is what Mary Leitao is pushing to get the DOP label dropped and replaced with, I can almost (if I bruise my brain somewhat) see that, but I completely fail seeing the point in it. I really don’t think that begins touching on all of her issues, but she needed treatment, long ago, same as anyone involved with her creation, in my strong opinion.

“A rose by any other name is still a rose”, and DOP by any other name is still the same as well.

How did I stay at LB for as long as I did? Well, I’d never witnessed anything like what I’d personally gone through, that two months in 2002, and when I heard that other people were going through the same type of thing, at first, before I was well acquainted with LB, I was naive. It didn’t take but just a little looking around to quickly become “un-naive”, but I still was.

I tried dodging the land mines I kept accidentally tripping on there, and the only person I could relate to, and I, eventually thought that maybe if we could talk about other things, it might give some of them a laugh, or two, and maybe keep their minds off of their misery for at least a few minutes. Laughter’s the best medicine we know of, but, of course, that brought its own set of problems, as did anything we ever tried using as a diversionary tactic.

I hadn’t looked around LB in months, until recently. It’s much worse than it was when I was there, as far as ugly, bullying, attitudes go.

You’re awesome. Really, you are. These poor people are so caught up in such an illusory mess.

pappasmurf says:

Guys

I want to thank you so much for starting your site and keeping up the good work. Imagine if I had have started out with them last week.

Que sera, sera.

I have talked it over with my sweetie, and because of my OCD and all, it will be one hour on the boards in the morning and half an hour at night.

Next week, I’m going out and applying for a job! Just over ten yrs since I have even really felt able to ‘face’ the work world.

Thanx again you two and I’ll be dropping by from time 2 time

Love Charles

Smileykins says:

Oh, Charles, my heart feels like it’s gonna explode. Give your sweetie a special hug, and have her give you one back, too, and pretend they’re both from me. Good luck and good courage, and God bless you both!!! I’m so happy with your news. It’s such a pleasure to have made your aquaintance, thank you, and please continue sharing yourself with us.

tallcotton says:

I registered there about 3-4 years ago. Later, I stopped receiving updates, so I registered again. That was also a long time ago. I guess some of the Morgies take those numbers seriously, but they mean absolutely nothing. Some people register more than once, like you and I have done. Some register just to receive updates. And some register because they have some of the symptoms of that crazy case definition. But with that broad definition, everyone has Morgellons.

pappasmurf says:

Well, I seem to be having some success at LB. Some of the peeps have had dental problems first too. I got my pic up

http://www.plurf.shutterfly.com

Now to get my camera working again to show the dramatic improvement from 2004.

Too bad that my brainfog did not allow me to get pix when I was really bad.

Hugs and kisses back to you all and I will keep you posted.

Smileykins says:

Thanks for sharing your pic, pappasmurf. I wish you luck in getting through, but knowing morgie people’s ways, even if they had Actinomycosis, typically, most would say that the illusive “morgellons disease pathogen” is what caused it, because to those who believe in it, it is to blame for everything. I mean, that was, and has been, what I have learned of their thinking.

tallcotton says:

Thanks for sharing the pic. Good Luck with the PCR, and with the job search.

pappasmurf says:

Back again folks, and I believe that I have a plausible theory here.

One that can be proven by spectroscopic analysis of the fibres for Calcium oxalate.

If this is positive, I believe that we are ready for animal testing.

It came to me after listening to the first part of Cliff’s broadcast on rense.com

CHILL’s theory of Morgellons

It begins with an insect bite. It could be a tick, a flea, a bedbug, louse or maybe even a spider.

The bite is scratched with dirty fingernails.

The scarring affects the hair, which grows on most parts of our body’s skin, and the ingrown hair is infected with an anaerobic Actinomycete and other bacteria which are found in the soil as well as the inside of our mouths (normal flora).

The slow growth of Actinomyces, combined with the pressure from the ingrown hair produces the little white pustles that we have all learned to hate.

When the hair is needled or plucked there is a sense of relief. But the hair grows back, now there are 2 or more hairs trying to fight their way through the scar tissue. If you are an individual with OCD or BDD, and are unmedicated, this concerns you a lot. You might say that it consumes your life.

Meanwhile, you are exposed to a heavy parasite load from your surroundings. Your cat/dog has fleas. You are so concerned with your face (in my case), that you neglect your housekeeping. Your animal picks up roundworm and/ or pinworm from other dog droppings. Your arse itches, and you scratch.

You do not wash your hands and fingernails adequately. You pick.

The lesions are bigger now. More hairs get entrapped. The cat fleas and/or other bloodfuckers seek blood and swarm to the mirror and area around which is not being kept clean (the black specks). Even with a protein rich diet (that many in the world don’t have) the anemia is more pronounced now with profond lethargy. This used to be called ‘the lazy disease’ because manual labour becomes impossible.

You don’t change the sheets as often. Your laundry remains in piles.

The variety of insects increase. You treat for worms, but the infection continues. You are on the proper antibiotic for Actinomycoses, but the cat fleas are not affected, they continue their serpignous journey unabated in Cutaneous Larva Migrans. The encysted hairs spring up. And you smoke a joint to relieve the anxiety. Now the fun really begins. Or you snort some coke, Feels good for the moment; but the paranoia creeps up on you. You drink a bottle of rum and you feel better for awhile. You are put on an anxiolytic agent, you stop picking. The hairs with their load of Actinomycoses continue to grow. You deworm, deflea, delouse your house. The larval stages are immobilized beneath your skin creating a bump that you know is there. “Just scar tissue”, says the dermatologist. “Some eosinic infiltrate with thickened epidermis” says the pathologist. You need a root canal says the dentist, or a new crown – “But I can’t afford it! “says me,” I’ve lost my job, I’ve lost my friends, “Well have you been taking your medication “says your shrink.

Thanx guys for the opportunity to post here! Hope you have a whole lot more hits on your site

Pappa Smurf luvs ya’

The world is still round says:

Pappsmurf admitts he isOCD and TallCotton and Smileykins admitt they are DOP!

Why, WHY would ANYone listen to you diagnose other people’s ailments?

Your on meds and still crazy, needing to accuse possibly totally innocent people — so you can feel less crazy? — more in control.

Better up the Prozac.

At least, you’re negative site is helping people become aware of this horrible disease.

And… the world is STILL round — but, there is no convincing YOU of that fact.

Smileykins says:

To: The World Is Still Round
From: Smileykins

I appreciate the opportunity you’ve given me to clear up your misunderstandings. I know misunderstandings are nobody’s fault. First, it goes without saying that we are all different. In my opinion, Pappasmurf is a very wise and brave man who’s much more in tune with things and in touch with himself than most people ever have the guts to be. Like you, I did not have what he has. I did not have what Tall Cotton had. I didn’t have whatever you have. I did not have what everyone else has. YOU do not have what anyone or everyone else has, either. Nobody has what others have. Everyone has something different, and only some women with children have what Mary Leitao has. What all the conditions are that have caused people to experience a separation from reality can only be diagnosed by a physician, and it’s wrong to think we’re handing out diagnoses.

Everything I say sounds utterly and completely ridiculous to you, I’m quite sure, with your having the understanding that there is something called “morgellons disease” with an unknown pathogen yet to be discovered. What I just said can’t help but seem to be anything other than a very bizarre notion I just seemed to have pulled out of thin air. When it “All Began With A Young Boy Named Drew”, in 2002, he was not the one who had a strange illness. It was his mother. This is nothing new, and people have probably had it for as long as people have been around.

I base my opinions on my past personal experience, as well as what I consider as fact based knowledge within the framework of what I have learned since hearing the words, “morgellons disease”. Back in 2002, Mary Leitao began forming her ongoing theories to try understanding, why, she thought, that blue fibers in her son’s eczematous skin were the results of an unusual and mysterious new malady. In her quest to find answers, she’d likened it to something in a centuries old paper from an era when people didn’t understand the consequences of infrequent bathing, which was common practice during the 1600s.

Yes, the world is round. There’s a peculiarity in Ms. Leitao’s attempts at setting us back into a time when people had so many misgivings about so many things. I apologize, but choosing to relate this condition to something that a few people during the 1600s referred to as “morgellons disease”, approximately two centuries from when it was popular opinion that the world was flat, I have to say that you’re more than a little bit confused about who’s confused. The world was round then, it’s still round, and nobody has anything that’s being called this “new disease”, whether you call it “morgellons disease”, or whether you don’t like the sound of that and want to try referring to it as something else.

Now, to address your reasons for talking in such a way as you did about Pappasmurf, Tall Cotton, and me. I wasn’t born yesterday, so I understand the motivations behind you, and other morgie people, reacting on such a primal level. I definitely haven’t much of a grasp of all of the intricacies involved, though. To try and help you understand things a little better, I’ll reduce my past experience down to a much simpler statement.

Four years ago, I was sick for two months. After I got well from my physical illness, which had caused me to be in a delusional state, the delusional state stopped. That’s as elementary as I can put it for you. There was much more to it. Just as Tall Cotton, I was not diagnosed as DOP. Just the same as him, I didn’t exactly NEED to be.

He didn’t have what I had and I didn’t have what he had. Neither of us had what Pappasmurf had/has. You haven’t got what anyone else has, or had, and nobody else does either. One thing has united us all. A heinous lie called “morgellons disease”. Individual people, with individual illnesses and conditions, that have resulted in them experiencing unique, and similar, events of something that most of them have been diagnosed with as being delusional parasitosis. Refusing to accept it, treat it, and screwing around and helping one woman call it something else is bad for everyone. Until the mind is set right, the body will never heal. Until the body is set right, the mind will never heal. I don’t care if this sounds like a load of crap to people, these are my opinions, I own them, and will gladly accept being proven wrong.

I don’t believe, not even a tiny bit, in a “disease called morgellons”. I believe in a lot of chronically ill people that are experiencing DOP due to their other health conditions, of which, Mary Leitao took to form her case definition. I don’t understand why all the shame surrounds such people, in having a diagnosis of DOP. I do know, however, from being in a delusional state for two months, that it was with me 24/7, because it was reality for me at the time. That, I fully understand. Until it ends, nobody in a delusional state has any idea that they are. Oh, I knew things were not right. Don’t misunderstand me on that. I totally thought I had something that was a weird new disease, just like true-life science fiction. I wish more people had strength to overcome things and think for themselves, but that’s just the way it goes. I used to say that this was an individual journey, for all morgies, when I was on lymebusters’ message board. It doesn’t seem that many have what they need to take it for themselves, though, content to leave MRF at the helm.

tallcotton says:

With the Morgellons case definition being so broad, most everyone has some of the listed symptoms at any given monent. One would almost have to be in perfect health not to. These symptoms cover a wide range of diseases. Just how does a person know when they have Morgellons, and not one of the others. I’d much rather have Morgellons than a real disease. In fact, Morgellons would be pretty convenient. I’d get sympathy. I’d automatically have some friends. I’d have a look-good excuse for all of my failures. I could probably get away with taking off work wnen I wanted to, or retiring altogether. It’s a wonder that this “disease” hasn’t spread before now. My uncle would have loved it.

Smileykins says:

# 91 mary Says:
August 16th, 2006 at 3:22 pm

Listen Buster-If YOU had it YOU’D KNOW it!

Mary Leitao, that isn’t you, is it?

Clicking onto the name, “Mary” takes us to MRF page, but surely it’s not her.

M says:

Hello.
About a month ago, I had a very harsh inflammation of my right ear.
Day after day, it got more and more swollen and painful.
I visited a walk in clinic, where they diagnosed it as a staph infection and put me on antibiotics, which worsened the swelling (which could have been a good thing, at least that was an indication that whatever my body wa fighting, was gettin some help in the fight and fighting it even more) then I saw an Ear, Nose, and Throat doctor, and was referred by him to a Rheumatoid Dr.
The Rheumatoid Dr diagnosed it as Polychondritis, a rare genetic disorder that causes your immune system to attack all the cartilage in your body. “Why then was it causing my immune system to be supposedly only attacking my right ear? Not the left as well (as reported in most Polychondritis cases)” I thought.
I had bloodwork done, and the test for Polychondritis came out negative.
Upon leaving his office I picked up some Prednisone that he had prescribed.
Prednisone is a powerful steroid that lowers the body’s immune system’s response. It is used for Rheumatoid diseases such as Chronic Arthritis.

The first 4 days of heavily taking Prednisone went fine and my ear’s inflammation went down considerably. The residual pain from the main fleshy area of my outer ear receded into the area where my ear joins my head.
On the 5th day, I began having a very strange sensation of something crawling on my skin.
I attributed this to side effects caused by the steroid. It is a powerful drug and can cause your nervous system to react in different ways.. Again, the sensations were very slight, so I payed this no mind.
By the 7th day of taking this, the sensations became a major anoyyance, and I called my doctor.
The feelings of crawling along my eyebrows and sideburns had been escalated to the point where I was actually brushing away whatever I thought was causing the feeling, yet nothing was there.
my doctor told me that he had never heard of this type of side effect from prednisone, and I am sure that being a Rheumatoid doctor, he probably subscribes it to someone at least once a week, and had probably most his professional career, since it is widely used for the diseases that people come to him for. Again, he said he has never heard of that side effect of Prednisone.
He told me that whatever it was, it will go away and to continue on the immune system supressing steroid Prednisone untill the 10 days since I had started was over.
I followed his orders and did so.
I stopped on a Friday, and gave a few days to see if this would wear off.
The situation worsened 10 fold.
It is to the point now, where I feel this phenomena all over my body, mostly around the hair follicles.
There is a seriously concentrated area around my right ear, where the pain remains, where it feels as if large tapeworms are gouting their way around my temple and face.

When I go to bed at night, and my body is completely at rest, whatever it is that is causing this, increases vastly in its activity, and bores around through my cheek, through my forehead, worming around my scalp like an amorphous colony of microscopic worms. The actual pressure that they cause can be unbearable. There literally IS SOMETHING moving around in my head, burrowing through my muscles. It is something I would not wish anyone to have to experience.

I have never had anything strange happen to my body, have grown up a very healthy person, no hallucinations, no delusions, no vying for doctors attantions, in fact I dislike going to the doctor just as much as anybody. I’ve never had mental issues, or issues with people doubting my mental prowess. I am an intelligent and very capable individual who has worked hard to get where he is in his profession.

I would never endanger my hard work in realizing the dream of doing what i love for a living, only to sabotage it with made up tohghts of some surreal sounding situation such as this.

I researched my symptoms on the web, and came up with morgellons as a match as far as this horrid crawling feeling goes.
I seem to be experienceing the initial stages of infection, and it is the most scarey thing I have been through in my entire life.
I cannot imagine goign throguh what I am already, and then experience the later stages that people report… lesions and strange fibers.
The only thing close to that that I am experienceing is a “shedding” of sorts where debris of my skin will noticeably fall off of my body, and down through the hairs of my leg or arm or face.
I have resisted the urge to look at these under a microscope.
I am hoping this is a known parasite, just as I had hoped it was prednisone side effects.

But when it feels as if someone is taking a pipe-cleaner wire and sticking it up under your skin and pulling it back and forth and around across yoru face, leaving indentation lines where its been… all night every night and to a lesser amount during the day… when you experience THAT… you know there is something in yoru body… somethign is in you living in you. This is not imagined. It is not the product of a rare delusional mental disorder. It is infection of a foreign body.

I believe it was fighting to get to a foothold in my system during my initial inflammation, and when i took the prednisone, that just opened the floodgates for this thing to take over the area with no resistance.

It is my opinion that if you experience anything like this , please stay away from anything that causes your immune system to lower in any capacity. Take good care of yourself and eat WELL. Eliminate sugars from your diet. Drink purified water and eat immune system boosting foods and suppliments.

I am in the beginning stages of what I know will be a surreal nightmare that will worsen.
This is the worst thing you could possibly imagine experiencing, and I haven’t even seen the worst of it.

-take care everyone.
-M

Smileykins says:

Tex? Lay it on the line, what the hell your problem with my man is. Ya asshole. He hallucinated when he fuckin did drugs. Are you on them, or plain crazy the natural way?

Smileykins says:

I had bloodwork done, and the test for Polychondritis came out negative.
Upon leaving his office I picked up some Prednisone that he had prescribed.

He has never heard of that side effect of Prednisone. He told me that whatever it was, it will go away and to continue on the immune system supressing steroid Prednisone untill the 10 days since I had started was over. I followed his orders and did so. I stopped on a Friday, and gave a few days to see if this would wear off. The situation worsened 10 fold.

M, You shouldn’t have EVEN been on that predisone if the polychondritis test was negative. You definitely needed to follow-up over treating your right ear for that original staph infection, especially when things WORSENED.

Get to an ER. Please.

Smileykins says:

You have to do this M. I don’t think that staph infection in your ear was treated adequately. You wasted precious time, effort, and money, on seeing a rheumatologist. Dag-gone-it, you even trusted him, and took the freakin’ predisone for something you tested negative for, through him. Then, your condition worsened, with your having thought that it was side effects from the predisone. It was the ear infection spreading, M!!! Then, you called that rheumatologist back, and he said he’d never heard of side effects like that, from prednisone, before, and for you to continue taking it. Hear me, M. You did not even need to be on predisone. Your swelling in your ear went down AS IT MOVED INWARD toward your mastoid bone and toward your brain. I am extremely concerned, and you are in a very precarious situation. Please seek the appropriate emergency care immediately. Please keep in touch and let us know how it went when you are up to it.

Patient-doctor-communication failure. Dang, that sucks.

tallcotton says:

Texas tar,

Stick it up your ass!!

Tall Cotton

tallcotton says:

Tesas tar,

I have nothing to hide. I posted a lot of crazy things while I was under the influence of drugs. You people want to stay crazy forever. I don’t. My thoughts are clear and logical. You post what you want to post, but it’s not going to stop me from posting the truth about Morgellons. That’s been tried before. Im not afraid of the truth, and I didn’t come here to be nice.

Tall Cotton

Michael says:

Grammavivki, eating healthy is good advice. But if people have something wrong with them, they should work with a health professional to do what is right for them. Everyone has different needs.

Eliminating Sodium is not a good idea. Luckily it’s quite difficult to do, but if you had zero sodium intake you would develop hyponatremia. People taking high blood pressure drugs are at risk here.

Being healthy is not all about diet either. Exercise plays a big part. But again, it varies by individual, and you need to talk to a health professional who can assess your individual needs.

Michael says:

grammavicki, I see you posted the same thing in other threads. I replaced those posts with links to your original.

Your attitude is quite commendable, sorry if I seemed a bit picky. Good diet and activity is very important in fighting any health problem.

tallcotton says:

Grandmavicki,

I think most of your advice is good, and I appreciate you posting it. I’m not sick, but most of what you posted is also good advice for staying well. I also notice that patience isn’t your strongest virtue. I would have commented sooner, but when I woke up this morning I was under attack. It was a personal matter, but I felt that I needed to take care of it. You seem to have become offended because no one replied sooner. Would you have also been offended had someone attacked you personally. I think you would have. Again, thanks for your post.

Tall Cotton

grammavicki says:

I guess I still hold to the idea that we should all be more responsible for our own health… Most MD’s do not emphasize the points I mentioned and with good reason… If everyone followed it, they (and the pharmaceutical industry) would be out of business.
I totally understand that conventional medicine has a place and even recently experienced its benefits in the way of surgery…
The changes I suggested are very difficult to accomplish and I see so many people spending lots of money on doctors and pills because it is the “easy” thing to do. Medicine is no longer a humanitarian venture… It is BIG BUSINESS!! There are many good people in the health field including doctors, but the ‘practice of medicine’ (another dubious term) has shifted focus to MAKING MONEY!!!!!
Because financially I have had the fortune to be poor, and learned that monitoring my own health is a viable alternative to expensive doctors… (as I recently experienced, part of this is knowing when to seek out help!
PLEASE DO NOT DISMISS MY THEORY UNTIL YOU HAVE TRIED IT FOR AT LEAST 6 MONTHS!!
I am 44 years old and have CURED arthritis and asthma in myself with diet and exercise alone!! Conditions that doctors had the GALL to tell me were either normal for my age or only treatable, not curable!! I will step down off the soapbox now… thank you for listening (or reading). Good Luck to all!
P.S. I did qualify by saying severely limit sodium… but in researching the sodium content of potatoes, rice, beans, etc. not to mention kelp and seafood, you will find that if eating a well-balance diet, sodium does no need to come from a salt shaker!! and especially not from the 1500 mg found in a lot of canned food!!

Michael says:

Grammavicki, you know, I suspect that if someone were to follow all your recommendations, then they very probably would be cured of Morgellons within six months. The problem is how to make them do it? Part of what is making people sick is their inability to take charge of their lives in a healthy manner – their sickness is what prevents them from following your cure. You managed to do it, and I congratulate you for that, hopefully others can follow your example.

Here’s a link to your original post:

http://morgellonswatch.wordpress.com/2006/06/30/how-many-people-have-morgellons/#comment-5694

tallcotton says:

Let’s keep in mind, “Morgellons”, as it is called, is a very large variety of other real and imagined disorders, and some are mental and some are physical. Of itself, Morgellons is nothing. I know what you meant, that their “Morgellons symptoms” would probably subside. I just want to make sure you aren’t misunderstood. I apologize if I am wrong.

Tall Cotton

Smileykins says:

Grammavicki, I’m sorry that I have somehow missed your posts on here, before now. But, I don’t really quite exactly think Mary Leitao posts on this blog, if she is the “Mary” that you had posed a question to, pertaining to your advice. I certainly do hope that you feel better, grammavicki. I had no idea that anything that I, or anyone else, did, was going to affect you, and I am sorry that it elicted the type of reaction that it did. Be well.

Smileykins says:

Grammavicki. I’m thrilled over your going back into, OMG, a full time job?! Keep that winning attitude, and nurture every aspect of your life, to maintain your focus and balance. Along the lines of what Michael said, I don’t care what people may have believed in, as long as they know that they can get out from underneath that belief. You have to want-to-be better badly enough. True fighters will make it, but sadly, not everyone has a fighting spirit and they have fallen by the wayside. I’m going to quote someone, without providing any name, not done as anything with malicious intentions, and I-promise-that-from-the-heart (Texastar, and others). This has been posted already, on line, over the internet, anyway, and I’m not revealing anything private. I just want to point out how revealing the content of these words are, though…..

I don’t know that it is a new disease either. All I have ever claimed to know is that strange stuff is coming out of my flesh. I believe that I have other odd symptoms that are related, but I don’t know that because I can’t see it. Seeing is believing.

I’m almost inclined to let my health go and get really sick again. Then I can attempt to take some of those videos you suggest Michael. But what if I can’t make it back? You may not know this, but I know that is a scary thought.

“Almost inclined to let my health go and get really sick again.”

Anyone that can see that and receive the message, will. For those who can’t, they just simply won’t.

Knock ’em dead next week, on that new job, Granny!

tallcotton says:

Texastar,

If you look back I think you will see that you started the argument with comment # 97 for no reason at all, unless you were taking up for ML. But ML popped off prior to that with her “Listen Buster”. Now get a grip on yourself!!!!!!!!!!

Tall Cotton

dant-ua says:

My e-mail one more time:

d _ a _ n _ b _ 8 _ 5 __ [at] __ m _ a _ i _ l [dot] r _ u

(delete ALL underlinings from e-mail!!)