Ginger Savely

Smileykins says:

No comment.

London says:

How are you doing tonight smiley, rather late, I know….but I do s hope you are up to be mean……I need to laugh because my fake, no see-um lesions (that are huge) hurt.

tallcotton says:

Ginger has had had some success, but what is going to happen when OCD kicks in the Morgies start and scratching and scab jacking. The antibiotics will have been rendered useless. If they continue in this pattern of behavior they will likely push Staphylococcus aureus another rung up on the evolutionary ladder, making the world an unsafer place for everyone. Most Morgies, if not all, need psychiatric medicine, such as Zyprexa or Risperadone. Many need medication for anxiety and depression. At 500 dollars a pop, she sure doesn’t sound like Mother Teresa. And as more people self-diagnosed Morgellons, the bucks continue to roll in. Some of these people may make several return trips. They belong in prison.

JeeezeLouise says:

London, please see my last post on the “How many people have Morgellons?” thread. There’s a snake oil salesman posting to Lymebusters, and those people do not need to be ripped off, and they certainly do not need to be taking toxic substances. Please do the right thing.

London says:

what we need is antibiotic chemotherapy……wait and see…..

little cotton says:

Hey London, do ya have a Morgellons head-itch cure in that little bag of tricks that I could buy?

tallcotton says:

“Do you really think Risperadone is going to make my head stop itching?”

No, but if you have a problem with your head jerking, it might help that.

Tall Cotton

Smileykins says:

Lack of proper sleep has a tendency to make people CRAZY and impair their judgment.

Word of advice. Don’t post at Lymebusters if anything keeps you up late at night. I can’t sleep for 3-5 days & nights in a row, from a permanent disability. They’ll stab you in the back there, telling others that you’re on meth, or some kind of uppers, like they did me.

London says:

My biggest infected area besides my delusisons of parasitosis is on my left arm……it most resembles what some AIDS patients get…with all those red
patches and biofilm-plaque looking textures……so this is what I’m going to do since it has been here since November. I’m going to take an ace bandage or two and wrap my arm tightly after I apply the silvadeen cream.

I have heard of patients getting better from cast….so I’m going to make my own……

And, the reason people itch and feel like bugs are under their skin is because they do have exactly that….it’s the larval or pupal (sp?) stage

of the arthropod….

Now here is the sad part…..If one walked into a doctor with the documented facts of this in our skin, they would not know what in the hell

to do anyway……I mean, this is all new….and it’s molecular cloning at it’s finest!

London says:

oh, I see now as of this morning at the cdc site; I meant Lymebusters site…the Mods had to bust a move. Yes, there is this great poster by the name of accudoc that just two weeks ago paid about 3000.00 for the specialized test to be done on him. Well, he posted a huge list of things that they found….I was the first to write and say wow and thank you……
I even went as far as saying that was the best post and the most important one I had ever seen posted there.

Well, guess what…..Not a mod one even remarked on it……but now, I think they know some of us are onto there BS disguise, that they have to do a quick, about face…..

So what they do ? They now are complimenting this accudoc person….

hehe…..

And you guys know what else??? We all know that pretty much everyone that post their has done their best on looking for what this disease is caused from, right? Of course I’m right. Well, no time did any Mods tell me that we should not be looking for the answers….

Then when I found an answer and I guess they thought I was going to post it or something…..they say all of a sudden, (granted in a playful way-I think???) that if we knew what this was and the powers that be knew that we knew…..well, that we would not be around but a day or two….YIKES-

it scared my butt off that is for sure. But my point is WHY DID THEY NOT TELL US THAT BEFORE?? HUH??

NOW As for as Morgellons Research foundation goes…..I can’t say anything bad….but then again, I have never dealt with them.

London says:

Michael,

Hey, FYI your medscape link would not open….I wanted to see it too.
🙁

Smileykins says:

Whazzup wiff Accudoc, bein’ an “expert speaker” on the topic of lyme disease (as I’ve seen on the web), and, bein’ an acupuncture specialist? He’s a morgie. How’s his profession failed in either keepin’ him well or healing him, I wonder. I mean, afterall, they gots needles for everyfang.

pappasmurf says:

How can he do his own acupuncture?

Acupuncture and Tai Chi have helped me a lot!

Smileykins says:

About Nurse Savely, “….she started getting so many patients with Morgellons symptoms that tested positive for LD, she worked with them also and noticed they often got better when treated with LD drugs.”

Hello?

Smileykins says:

Well, but let’s think about this. There are new, not too highly publicized, cutnaneous manifestations of late-stage lyme disease, which I wrote about somewhere here. That’s one thing to take into account.

Seriously, too, an important thing, that seems to appear as something that’s getting overlooked, is the fact that late-stage lyme disease carries with it a definite neuropsychiatric effect.

Okay. It’s my understanding that Nurse Savely encountered unusual skin symptoms in some of her lyme patients. After a while, she heard about “morgellons disease” and made an association to so many of her lyme patients having the same symptoms.

Realistically, although, in my mind, I can’t see how in the world it happened, does it not appear, based on what we know, that what happened, is that Nurse Savely made an incorrect assumption based entirely upon someone else’s misconceptions (Mary Leitoa’s)

….and that still brings us back to what?

Smileykins says:

I was giving far too much of the benefit of doubt to this. Refreshing my memory with her comments in that May 23rd interview, heck no, it’s just way too ludicrous. Surely nobody can be that “dense”, unless there is something very wrong with them.

There are so many nonsensical statements there, that it’s hard to pick the worst one out, but this is pretty stunning:

Question from ______ in San Antonio: My symptoms are bumps all over my head and parts of my body with painful sores, headaches, sore muscles, and itching. Being in the heat really makes the parasite swarm.
Sores can last for months and itching is uncontrollable. Are these symptoms being felt by others?? The doctors can’t seem to fix the problem.

Ginger Savely: Yes, these are all classic symptoms.

COME ON!!!! The thought never even occurred to nursey-poo to say those could be symptoms of anything else, including, lupus…which ain’t quite exactly “fixable”.

Smileykins says:

With all due respect, I don’t understand what you mean by, “it’s the other way around”, in relation to the answer Nurse Savely gave to the person with the question.

She didn’t see the person, and it was irresponsible to give such an answer as she did. If that doesn’t reek of unprofessionalism and it isn’t blatantly evident that she is promoting a false agenda, then please tell me what to call it.

I don’t doubt for a split second that there are morgie people who have scleroderma, lupus, and a host of other illnesses that are to blame for their symptoms. There is no such thing as “morgellons disease”.

I’m well aware of what you’re saying about disease causing microbes, as well as their relationship to cancer, but there isn’t a cure, yet, for cancer. Genetic research, will make a way someday. We’ve come quite a long way with it, in learning that early detection is key for the hopes of eradicating it in early stages, though, so it isn’t the inevitable “death sentence” it once was.

Morphea, which “is” localized scleroderma is a symptom of late-stage lyme, but few people seem to be aware of it.

I’d like to know what your point is, please.

Smileykins says:

I’m not even going to qualify that with a response.

tallcotton says:

OMG. Morgellons isn’t a disease!! It has not causative organism!! Some Morgellons patients may have Lupus or Scleroderma, however. How do you jump from a non-disease to a disease caused by an organism?

tallcotton says:

I’m glad these people can’t wish diseases into existance.

pumpkin says:

“Dr. Trevor Marshall says:

‘Th1 is short hand for “T-helper cell type 1” which is a state of activated CD4+ T lymphocytes thought to be behind an immune response which is characterized by a cytokine profile slightly different from the body’s normal response to viruses, funguses, etc, a profile which is strong in a cytokine called Interferon-gamma.

The Th2 immune reaction of a healthy body does not generate much Interferon-gamma.

This is important, as the Th1 immune reactions often are thought of as an ‘over-active’ immune system, because the Interferon gamma, and the 1,25-dihydroxyvitamin-D it generates, cause extra mast cells to differentiate to monocytes (primitive white cells) and then to further differentiate (grow) into macrophages and dendritic cells, the most active phagocytes of the immune system, those cells which are charged with the job of digesting bacterial pathogens.

What I discovered was that when the phagocytes themselves become parasitized by CWD variants of certain bacterial pathogens, it is the pathogens which determine the body’s immune response, not the T lymphocytes. The Th1 lymphocyte excitation is really a result of the intra-cellular infection, and not a response to extra-cellular bacteria. This is because the bacteria within the cytoplasm of the phagocyte can directly force the nucleus of that cell to produce the Th1 cytokines, presumably as an advanced defense against the host (human).

There is more info about this in our paper “Sarcoidosis succumbs to antibiotics – implications for autoimmune disease” at URL http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=15246025

The free full text of that paper is available at
http://yarcrip.com/sarcoidosissuccumbs-preprint.htm

I hope this helps, it is quite a complex topic, and the solution had eluded science for at least 50 years ‘

for more information about the Immune System you can order the DVDs ‘Recovering from Chronic Disease’ derived from Our Chicago Conference @ our AutoImmunity Research Website. Here Dr Marshall explains how the immune system is perverted by the bacteria. and the “Familial Aggregation” presentation also deals with the genetic predisposition issue in detail.

http://www.marshallprotocol…/ ”

That was a good post.

Smileykins says:

Having been there myself, I know that anyone experiencing an inexplicable defiance of nature really and truly thinks there is such a disease as “morgellons”.

I have a major problem with this “morgellons’ movement” because it’s so unforgivable to increase all the ill conceived notions and misconceptions of sick people who already have difficulties beyond what they can handle.

If I had heard about “morgellons disease” several years earlier, during the time I’d had all the manifestations of it, given the condition I was in at the time, I may have very easily, no kidding, succumbed to death, having allowed it to further warp my already messed up thinking processes. That concrete realization is why it’s all-too-hard to conceal my outrage over what Mary Leitao has done, taking “her made up (although all too real, for her) disease” mainstream.

I’m ill-equipped, as are most people, not being trained in how to carry on relations with believers in this, and I am the very first to admit it. I’m 100% unaccustomed to the entire range of difficulties; people taking offense when I’m not even addressing them, lauching attacks on me and twisting everything I’ve said, past and present, harrassing, threatening, and confusing me with others, and so on and so forth. Calling these things “difficulties” is an understatement.

And, with that being the case, when I was a participant in lymebusters’ message board, I didn’t know of any way to walk among them that was satisfactory. I was as polite as I knew how to be, going overboard even, but I couldn’t be all things to all people, and I’m not accustomed to anybody laying it out and telling me how I can serve them. Despite that, I remained, and I was hoping to help reach some people, which I did, but it was minimal. It seemed that those who “got it” would usually just get sucked right back into it again, but that’s how it goes.

Naturally, I lack training, and I didn’t choose to encounter any friction on such a blog as this. I exercise my freedom to be open here, whereas that was not an option in the past.

Everyone knows what the purpose of Michael blog is, and that it’s his right, same as it is for all of us, to have a blog on any topic he chooses. It’s a perversion of truth to call it taking sides or being at war.

He’s providing an extremely commendable, much-needed service and hopefully, when there are people who find themselves in a strange place they don’t recognize, they’ll find his blog.

I appreciate that he allows my radical opinions, as a person who has been in on the other side of this topic, right in the belly of it at one time, and made it all the way back intact. I didn’t know that people could not be talked out of such beliefs, when I first found out about this phenomenon on lymebusters. How could I not know? I was alone in my experience, and thought that everyone asking for help could be told, and that they’d understand, that they were going to be all right too. I was dead wrong.

Smileykins says:

It proved to me, to be completely futile to suggest that morgie people do something of value, in learning the proper ways of balancing their health, studying human anatomy, including the functionings of their skin and their immune systems.

It was also, just as useless to suggest that they learn about the “real” diseases they’ve been diagnosed with, for those who have been. If it’s “research” they enjoy, I tried impressing upon them that they would be just as fascinated, and they would actually even learn something to help benefit themselves, and their families, in the process

It appears that a huge perversion of thinking that’s highly prevalent among believers, is the opinion that men and women of science are not doing their jobs researching diseases in efforts of finding cures.

Many are against the medical community and the pharmaceutical industry. Many want to “hold out for a cure” and they’re against treatments for illnesses, when treatments are all we have for countless diseases, and we’re darned lucky to have them.

Yet, it appears that many of these same people, quite often, take plenty of antibiotics. That is a contradiction of their own beliefs. But, being under so many bizarre beliefs, and so terribly disorganized in thought processing, not a single one of their beliefs is doing anything towards helping one single, solitary, person.

Does one take an aspirin to see if it will alleviate a headache, or does one hold out for science to discover the cure behind the headache? That makes about as much sense as these outlandish notions.

All of the thoughts morgie people possess are way, way, out there and not grounded, whatsoever, in the reality of our existence.

“Reality” is foreign to believers in this, and they cannot be reeled back in. In the meantime, looking way out into so many things, so very way out there, into so many extreme directions….

…that is not assistive to the individual with the illness and it’s not doing anything to help them, or their families.

pumpkin says:

“It appears that a huge perversion of thinking that’s highly prevalent among believers, is the opinion that men and women of science are not doing their jobs researching diseases in efforts of finding cures.”

I had presented someone researching. Even among researchers, there is dissent. The popular opinion isn’t always the right one, or else, they’d never need to make changes or improvements in theories and practice.

pumpkin says:

Thank you for the thorough explaination of your frustrations. You sound like a caring person. It’s too bad you weren’t better received.

Smileykins says:

You’re welcome, Pumpkin, and I thank you, for understanding. It is highly frustrating, and it’s pointless to try being of any assistance to “the victims of morgellons”. Mainstream society’s never encountered anything like this before and we wouldn’t be if not for the internet. It’s neither here, nor there, but clicking on my username leads to my close encounter with this. It’s just no fun knowing how injurious this myth is to people, and how it further influences them into causing more harm to themselves, and their loved ones, often leading to severe disablement and death.

pumpkin says:

I clicked on your name and read one hellofa story. If your accounts are similar to those of the morgellons people, they would be the archetypes. Your fiancée says that some of what happened may have been hallucinations. What about his mother and sister? I can’t imagine experiencing all that you experienced, whether it be a delusion or a physical illness, without seeking medical attention. Why didn’t you call a friend or family member to take you to a physician? What do you believe happened to each of you that appears to be a similar experience? Toxic buildup? I’m unaware of any medical literature that describes toxic buildup that sounds like what you two had. I’ve also never heard of an autoimmune response that does what you say you saw. I’ve no experience with delusions, but it seems odd that others can corroborate your delusion.

I do hope each of you find peace in your life after having survived such a harrowing experience.

Smileykins says:

As lenghty as Tall Cotton’s and my accounts are, they don’t nearly describe it all. My daughter and my mother saw things also, upon a few occassions. There were no explanations at the time, and I took their advice, didn’t mention it, and tried to ignore it.

Ignoring it was an impossible task, but yet, I haven’t got OCD, to begin with, as so many morgies do. I have read that Mary Leitao encourages her followers to buy woods lamps and microscopes.

I knew I had to be going bonkers, so I kept it to myself. I’m a rather independent and stoic person anyway, and, living alone, I’d had no one to assist me back then. My adult daughter shopped for anything I requested, but otherwise, I depended on myself, as I always have, and didn’t want to bother her. Many people assume that just about everyone has families, but there are such things as people with no living relatives, as hard as that may be to fathom.

At some point, before I progressed even further along, I’d somehow managed driving myself to an emergency room, two nights before I had an ambulance take me to another one. At that first visit I was told I was having hallucinations, but not given a cause for them. The doctor was having a bad night, anyway, saying that she was fed up with people who were sick, not going to their primary care physicians, but coming to a facilty strictly meant to treat emergencies such as serious accidents.

Two nights later, during the second ER visit, they did blood and urine cultures and I was diagnosed with only a bladder infection, and given Cipro, rather than proceding on with a proper examination that would have resulted in a kidney x-ray, and the detection of kidney stones that I passed a short time later.

The reasons for listing my health history in my story, is for the purpose of illustrating that I, too, have many of the illnesses that believers in “morgellons disease” have. You see, many, if not all believers, think every ill that they have is due to “morgellons disease”.

For instance, one time I read a female morgie’s comments, asking if others noticed what she had been experiencing. Even at my worst, something like this was never inside my head, though. She’d said that on some days, her “morgies” wouldn’t allow her to do something as simple as to move a bucket of water, or a footstool, but that on other days they would (I think this was how she put it), give her super-human strength, that would allow her to lift a couch all by herself.

Well anyway, like I have told countless times, three years passed and my daughter called to tell me to tune into Coast To Coast radio one night last February, because whatever I’d had in 2002, was apparently real, and I had not been the only person to have gone through it. That’s true, but it’s been around an awfully long time, and now it’s called something other than what it is.

Smileykins says:

Well, here. This is from Michael’ blog’s “Delusions” category….

Morgellons was invented in 2002 by Mary Leitao, to explain her 3-year old son’s eczema. Leitao looked at her son’s skin under a microscope and found fibers on it, and decided she had discovered a new disease characterized by fibers emerging from lesions, and started a foundation. Her son’s eczema cleared up naturally. His symptoms did not include those of the more recent claims of Morgellons. The list of symptoms has rapidly expanded as more people registered. Leitao encouraged people to seek out fibers in their lesions. Morgellons was spread over the internet.

(Not enough homework is being done by people to see this mess for what it is.)

tallcotton says:

Mary Leitao said enough. She said that her son was diagnosed with eczema and that his doctor said that the fibers were nothing to worry about. Her own report indicates that she was suffering from Munhausens by Prozy. It’s obvious that she was alarmed by her own delusions, and that her son suffered unnecessarily because of it. A lot of others are suffering because they have ignored their physical and psychiatric diagnoses and followed her insane ideas. Now they all think they have a non-disease called Morgellons, and that it’s responsible for all of their ills.

It would be nice if everyone had a strong support system, but please don’t make the mistake of thinking that Lymebusters Morgellons Forum is going to make you stronger. Smileykins has never leaned on me. She’s never needed to. She’s the strongest person I’ve ever known. I’m glad we met, and I don’t know whether we would have had it not been for Lymebusters, but I believe we would have. Nevertheless, good people can meet in bad places. That doesn’t mean that the places are good.

Tall Cotton

Smileykins says:

Oh, I’m sorry. I reviewed your message, Pumpkin, and I see where the misunderstanding is. I was not on LB message board to “receive support”. I was fine, and had heard about this “thing called morgellons disease” three years after I had been ill and recovered, due to a broadcast on the radio. I tried to “give support” there, I didn’t need any.

tallcotton says:

Not you, Smileykins. I was talking to Aherah, Linda, Upsnapishdim, cutmeabreak, Pumpkin.

tallcotton says:

Godshammer!!!!!!!!!!!

tallcotton says:

Okay. Maybe not MHKS.

Smileykins says:

This more recent symptomology and the explanation for it fall short of proving anything except what this person has, which is still screaming out, same as it did upon the individual’s arrival here. The only service I afford such a tortured state is to pray for those it’s inflicted upon in real life.

Smileykins says:

The explanation given for this can be found under the topic heading “Case Definition”, July 11th, 2006 at 10:38pm, followed by another post at 9:40 am. I’m ill-equipped, for sure.

Igi Ydgi says:

Morgellons:

Didn’t know I was in the wrong place, thanks. I’ll re-post some here so others will see it.

Emerging does not mean new:
“Emerging” means just that, it is coming-out. The West Nile Virus is an emerging infection in the U.S and it’s certainly not “New”.

Thanks for the correction. Maybe I’m wrong, I don’t remember exactly where I was reading – but it seemed that you tended to liberally through out accusations impliing others (people I know @ M.R.F.) are being disingenuous in their statements and motives. If you can’t show a history of this behavior, or evidence — than this is just hitting below the belt (it’s too easy to do). What is the differnce between that and calling people liars. I know you can’t stop many other bloggers (can’t reason with many of them either), but please try to stay above the bar. My apologies if I’m wrong.

For you and the rest, who still just don’t get it. This is not a “skin problem”, or irritation, or rash, or any other common skin infection or disorder! Much more severe symtoms come with it.

IT IS D E B I L I T A T I N G ! ! ! — GET IT ? ? ?

If I (and the other sufferers) could function and live our lives in anything close to a normal fashion, we would not be crying out-loud for relief and going on TV. We would just be dealing with the irritations as best we could, like you everybody else.

Why would anyone (otherwise normal and successful) put themselves on TV to say; “I’m very sick, and I need some help, and I’m not getting any relief”?

Come down to earth people!!!

To say there must be other motives defies any common logic and a basic understanding of human nature. These people have reputations in thier communities, why would thay risk that for a moment on TV? Sure, many like a moment of fame; to testify as a witness to something, or to demonstrate something or someone they might be proud-of. A desire to publicly say “I’m sick”, just to get on TV?, NO-WAY !!! Everybody (with a reputation) would choose a different line than that!

I have always hated going to doctors, and still do. I waited until I was desparate for help. That was 6-years ago, I’m still just as desperate now. By the way, I’ve been diagnosed as having a dozen differing ailments, disorders, and/or infections, including tinea, by dozens of different doctors each diagnoses to be rejected by next doctor and replaced with another. I’ve been on every antifungal drug available, no help.

I’m lucky to have found a very well respected Dermatologist with a PhD at Major Medical University, for two years he’s been trying to diagnose and treat me. He is convinced that I have something (not dilutions) so far his lab does not have the ability to identify the composition of the fibers, but they are not saying that they are textile fibers, the lab reports term them
“unidentifiable”.

You want proof of my “different” fibers. Can I send you photo’s?, do you wand me to send you samples? I’m always short on time, but if you want them – I’ll find time to, I don’t have a web-site.

Igi Ydgi

Michael says:

And Igi, I’m sorry for not being clearer, the top post is actually:

http://morgellonswatch.wordpress.com/2006/07/17/wymore-casey-morgellons-letter-to-doctors/

You commented on the bottom post of the main page, which has several posts on it.

And yes, feel free to email me photos.

morgellonswatch@gmail.com

Michael says:

Mandi, I know they are sick. I just don’t think there is any evidence that there is a new disease that creates fibers. Obviously the symptoms are real.

If you treat “hundreds” of Morgellons patients, then you must be able to diagnose them. What are the diagnostic criteria for Morgellons?