Ginger Savely participated in a “live chat” today.
I’ll quote a few bits:
Ginger Savely: There is no one treatment that works for all. I tell my patients
that they are all “lab rats” because this is all experimentation. I give a
combination of antibiotics (sulfa drugs, Biaxin, Cipro, Doxy are some),
antifungals (fluconazole) and antiparasitics (like ebendazole, Stromectol or
Prazequantil).
Lab rats huh, you are experimenting on your patients (see later)?
Question from Michael in Los Angeles, CA: Nurse Savely, it is often mentioned
that the highest number of cases of Morgellons are in Texas, California and
Florida. Is it not the case that these three states simply have the highest
populations of all the 50 states, and that Morgellons is actually evenly spread
over the country?Ginger Savely: Good question. However, there is a
higher PERCENTAGE of the population of those 3 states that are reported cases.
So it is not just simply the quantity from each state, but also the higher
percentage of the total population from each state.
Not true. According to the USP database, Arizona, Georgia, Missouri, New Mexico, Oklahoma and Vermont all have a much higher percentage than California. Still, the USP sample size is small, so I’d like to see some figures from the MRF. Remember however, it’s a self reported survey, not very accurate either way.
Ginger Savely: I no longer have a practice in Texas, unfortunately. The heat
from the Texas Medical Board was too much for me here. So I have transferred my
practice to San Francisco, CA. California is a more liberal, open-minded state!
Patients who want to see me in San Francisco need to send an email to
lymesf@gmail.com asking for a new patient packet. If you have a sympathetic
local doctor you can ask him/her to contact me directly for suggestions
So, kicked out of Texas, and trying to drum up business in SF. These TV spots make for great infomercials eh?
Ginger Savely: I’m not sure but I do know that in general the medical
establishment tends to be very conservative and cautious. There is a big move in
medicine towards what is known as “evidenced based medicine”. In other words,
unless there is hard-core science behind something doctors won’t touch it
What, “evidence based medicine” is wrong? Hard-core science is bad? If you can’t figure out what is wrong with someone, then just dose them with massive amounts of antibiotics, antifungals and anti-parasitic drugs.
Ginger Savely: Yes, Rife machines are sometimes used and in approximately 30
percent of cases it helps.
Rife machines!!? Are you kidding? Better watch out for the FDA
Ginger Savely: It would be unethical to do a double blind placebo controlled
study at this stage, with so many people suffering. We just try each treatment
on each patient until we find something that works for THEM. What works for one,
doesn’t seem to work for another. This is puzzling. But right now, it is all
about getting these people better and ending or at least lightening their
extreme suffering.
Ah yes, unethical to do any kind of study. What if placebo were the most effective treatment? Are you perhaps even keeping records? Any statistics at all?
The evil nurse
In a recent interview, Savely also said, “Believe me, if I just randomly saw one of these patients in my office, I would think they were crazy too. But after you’ve heard the story of over 100 (patients) and they’re all — down to the most minute detail — saying the exact same thing, that becomes quite impressive.”
Now what is it about these people that would have caused the nurse to believe these individuals were crazy, had she randomly seen one of these patients. I must be something the person does, or the way the person looks. If that persons looked and acted normal, why would she have thought such a thing. In such a case I believe that it would have been their amazing and “unbelievable” story. And if that person showed sincerity about an unbelievable story, would she not question the persons sanity.
She went on to imply that she had “heard” the exact same story from over a hundred patients, “down to the most minute detail,” Savely said. But What does Savely claim to have actually seen with her own eyes? Is Nurse Savely delusional? Why can’t they all be delusional? No one reported any “fibers” until Mary Leitao spread her “suggestion” around the world.
They’re all the same, down to the last minute detail? Wha!??!? This blows mey mind.
Our nation’s public health officials need THEIR minds to be blown. This has all been going on underneath their noses while they’ve been busy doing their jobs. They haven’t been made aware of this, when all the CDC has had time to do, so far, is to politely respond to all the morgie letters that they’ve been inundated with. They haven’t had the time to even consider what’s been happening behind scenes, assuming nothing was, I suppose.
My statements make me sound like a morgie promoter and advocate. I don’t mean things the way it sounds.
These people need geniune assistance to come their way through the disbandment of the MRF.
http://www.ktvu.com/news/9264350/detail.html
Thanks for that link, Anonymous.
“Pathologists and dermatologists and lab reports [said] that these were textile fibers appearing in the skin of the sufferers. Now that’s just not true, to be perfectly blunt about it,” says Prof. Wymore.
…There, is a perfect scam artist, or a perfect nut, to be perfectly blunt about it.
Wymore says his tests rule out not only textile fibers, but also worms, insects, animal material and even human skin and hair. He says the filaments are not an external contamination.
Instead, they are a substance that materializes somehow inside the body, apparent artifacts of something infectious. More results are expected soon. And Wymore says skin problems are not the worst symptoms.
…He needs to get off his obsessive kick and learn about wound repair processes, for one thing. Yeah, it would account for “a substance that materializes somehow inside the body, apparent artifacts of something infectious. ”
He says a neurotoxin or microorganism may disturb muscle control and memory.
“The neurological effects are the much more severe, life altering and much more dangerous of the conditions,” explains Prof. Wymore.
…He’s plumb full of shit!!! There’s NO relationship there to this made-up fake disease of theirs.
This month, Georgia began a statewide Morgellons registry. Prof. Wymore says he is about to begin a clinical trial and offers this to sufferers: “We know there’s something going on here. You’re not delusional.”
…He’s delusional. EVIL.
Prof. Wymore has just released an open letter to doctors treating patients with Morgellons symptoms. It asks physicians to take it seriously, saying these patients are likely suffering from a still untreatable emerging disease.
The WTF foundation
Wacky Wymore went to school,
There he broke the Golden Rule.
He was always cutting class.
Earned the title, “Quack, quack, quack!”
Take your pick. If you have what you consider to be “morgellons disease”, which would you prefer to be thought of as:
a. Delusional
b. Stupid
c. Gullible
There are reasons for what has manifested in peoples’ skin, but it’s not “morgellons disease”.
Wacky Wymore had a book,
But he never took a look.
Kept it in his black back pack,
Now he’s just a “quack, quack, quack”.
“Ginger Savely: It would be unethical to do a double blind placebo controlled
study at this stage, with so many people suffering.”
OMG, my dad is in a double-blind Alzheimer’s study. I had no idea how unethical such things are! OMG, actually using scientific methods to identify actual disease pathologies and develop safe and effective treatments?!?! Will the horrors never cease?!?!?!
Thank God there are ethical giants like Savely in the world.
Don’t freak out, just get your dad out of the study, now, if you’re all worried. Everything will be okay. Be calm.
Calm down smilykins – take your meds.
abac68, since you need me, personally, for something you aren’t able to get elsewhere, you’re welcome to contact me here:
http://of-morgellons.blogspot.com/
Ask somebody with comprehensive skills to read and explain it to you.
Don’t worry I read it. It is so impressive how ONE person can be so many different people, I think they call that Schizophrenia? So were is tall cotton and Michael right now?
How about we tell the people around the world – I managed to shut this web blog down yesterday because you had to delete nearly all my posts because you don’t won’t the world to now the truth. I think way back you wish you had Morgellons Disease, but you don’t fit in anywhere.
abac68 said…
You Sick, twisted, individual. How dare this blog site allow material to be written about “a little boy named Drew” and the late “Tavis Wilson” and his mom. LEAVE THESE PEOPLE ALONE!
8:24 PM
1111 West 17th Street
Tulsa, Oklahoma 74107-1898
918-582-1972
May 15, 2006
Re: Morgellons Disease
From: Randy S. Wymore, Ph.D., Department of Pharmacology & Physiology
Rhonda Casey, D.O., Department of Pediatrics
Oklahoma State University Center for Health Sciences
Tulsa, Oklahoma
Dear Practitioner,
This letter concerns a patient population that manifests a particular set of symptoms we have encountered
with increasing frequency, and that OSU-CHS is actively researching. The condition has been labeled as
Morgellons Disease and it is unclear if this is a single disease or a multi-faceted syndrome. Until recently, most of
these patients have been grouped as a subset of the diagnosis of Delusions of Parasites (delusional parasitosis;
DOP). After obtaining careful patient histories and thorough physical exam, we have determined that Morgellons
patients have several important distinctions ruling out the diagnosis of DOP.
This population of patients frequently exhibit the following symptoms:
• Distinct and poorly healing skin lesions with unusually thick, membranous scarring upon eventual healing.
• Moderate to extreme pruritis at sites of lesions as well as un-erupted skin.
• Microscopic examination of these lesions will most often reveal the presence of unusual fibers, which may be
black, blue or red. These fibers, which many healthcare providers initially thought to be textile
contaminants, are often present in the deep tissue of biopsies obtained from unbroken skin of individuals
with this condition. Careful examination of these fibers further reveals that they are frequently associated
with hair follicles, and are definitely not textile in origin.
• Most of these patients suffer from a host of neurological symptoms which can vary in severity from mild to
severe. These neurological symptoms include peripheral tingling, paresthesias and varying degrees of motor
involvement which appear to progress.
• Intermittent cognitive and behavioral status changes are often observed and also seem to progress with the
severity of disease. This is often referred to as “brain fog” by the patient as they experience a waxing and
waning of this symptom.
• Laboratory findings in these patients are variable, but often reveal eosinophilia and elevated levels of
Immunoglobin E.
• Other symptoms of varying severity and frequency have been described, and are included in the attached
case definition.
Continued…
Morgellons patients differ from classical, delusional parasitosis patients in several areas. They do not respond to
antipsychotics, and new lesions continue to appear upon complete cessation of manual excoriation.
Due to the sensation of foreign material in their tissue, that has been described as sharp, stinging and/or splinterlike,
the patient may have discovered the fibers prior to seeking medical care, and may bring them to your office for
examination. Please do not assume that the patient’s problem is purely psychological based on this propensity.
Many of these patients may appear skeptical of traditional medical care due to frequent dismissal of their
symptoms in the past. The combination of suffering from a chronic disease with distressful symptoms and no known
cause or cure can cause some patients to appear anxious or agitated.
We encourage you to take the time to carefully interview any patient who may fall into this category, perform
any testing you may deem appropriate, and most importantly treat the patient with compassion and dignity.
Sincerely,
Randy S. Wymore, Ph.D. Rhonda Casey, D.O.
Director of Research, Associate Professor of Pediatrics
Morgellons Research Foundation
Assistant Professor of Pharmacology
Oklahoma State University
Center for Health Sciences
1111 West 17th Steet
Tulsa, Oklahoma 74107-1898
email: morgellons@okstate.edu
Morgellons Information Line: (877) 599-7999
http://www.healthsciences.okstate.edu/morgellons/index.cfm
I thought you Morgies didn’t believe anything that doctors say. Why would you believe Wacky Wymore?
Obviously some of you have never met someone with == “skin crawling like bugs under your skin”, or “no matter what I do, it won’t stop. I scratch and dig at my skin until I am bleeding. I do it in my sleep and wake up with blood on the bed”.
I live with one and her father and two brothers have the same symptons. SO In words coming from MY MOUTH>>> If you are so ignorant as to post responses alleging “lies” and “half truths”, then give me your name and address. I am a veteran, with a purple heart and 12 yrs of law enforcement under my 3rd degree black belt. I’m 6’4″, 235 lbs of “Ignorance Correction”. Let’s talk or shut up your ignorant people. Go to a reality show blog and have fun… These people are going through something that noone has any help for..none… imagine itching, insanely all night long…. or imagine me coming over to your house.
Jayway, I’m sorry about the people you know who have the chronic itching and scratching, it must be very hard to deal with.
Do you think they have Morgellons? There are several conditions that explain itching and scratching, not all of them respond to treatment.
I have had it for 20 years and just discovered others had it after watching the Primetime broadcast. Now I’m reading everything I can on the internet and waiting for progress towards a cure.
I want that cure, too.
I’m sorry. That big man threatening violence, skeert me into saying that. I’m in remission now, but when I’ve had eczema, even though I could use mind over matter to keep from scratching it during the day, I did it in my sleep, like meanie described, and there would often be blood involved. That’s typical for eczema, and it’s mentioned in articles on it. I’d even wear cotton gloves to sleep in, to try to preventing it. It didn’t help. Somehow, I’d get the gloves off. Eczema is a hard thing to have. It doesn’t have a cure, only treatments, but you have to be diligent, and work with your doctor. Read, since you’re here, and hope, with all your being, that you can learn what “morgellons disease” is.
Having a persistant itch is a terrible thing. It makes a person feel like they’re going to go bonkers. But Morgellons is a lie, a terrible lie, and it only hurts these people to think they have this made up, terminal diseasem, with no known etiology. The itch is tormenting enough to deal with, without the added fears and other false beliefs. This Morgellons movement was started by a mother whose child had eczema. In my opinion this woman is mentally ill, and her lies are helping to destroy a lot of lives.
With all due respect for the concerns you have posted, I have known Ginger Savely as a patient being treated for other conditions. (I do not suffer from any symptoms of Morgellon’s.) I found her to be sensibly conservative in her treatment and that she was particularly skillful at listening to her patients. I would say that she was a very ethical and conscientious nurse practitioner.
Of course we wish to exercise proper skepticism, but since the way that I, here in Austin, Texas, found this site was through looking for references about some dreadful symptoms that a friend in South Austin is having, I have to bear in mind my high regard for Ms. Savely in the years when I was seen in that clinic, and I cannot automatically discount the notion that there is an infectious factor driving these symptoms.
Incidentally, I haven’t seen Ms. Savely in about 12 years and was completely unaware of any controversies or of the real or false existence of Morgellon’s. I was only looking for info all over the net on the symptoms that a friend of mine is having. Guess where she lives? About 2 miles from the office in South Austin where Ms. Savely used to practice, and where Ms. Savely found so many patients suffering similar symptoms.
Guess what else? It appears as though there is a severe mite infestation in my friend’s home. The vet confirmed their presence on a tropical bird in the home; unfortunately, I don’t know what type of mites they are. They are not necessarily bird mites; there were some dead rodents in the attic also. They survived a bombing of the house this weekend.
Although I agree with the idea of exercising proper skepticism, let us not forget that there are many thousands of poorly studied mites and other organisms, and let us not assume that we already know everything. And in terms of treatment — right now my friend has very little left to lose, because she has already lost almost everything she had. If there is anything that could relieve her symptoms, whether due to the placebo effect or due to efficacy, then she needs to try it. She is in desperate straits and has tried just about everything else.
If spiders can serve as vectors of an organism carrying Lyme disease and Rocky Mountain Spotted Fever, could not mites carry a similar infective organism causing the symptoms described by Ms. Savely? (If so, there would still need to be a protocol in order to discern persons with mite-borne infection from those with purely psychiatric or dermatologic symptoms.)
Let’s remember that microscopic mites are ubiquitous and poorly studied. They are living in the follicles of your eyelashes and eyebrows, for example! We humans really are not separate organisms — we are colonies of many organisms, some of whom we depend upon in order to digest our food, etc. We do not know everything yet about our health, and many new ideas are initially controversial. Yes, there needs to be a scientific process, and yes, I agree that there need to be double-blind studies — but those are beyond the scope of an individual practice, and the CIDC should get onto this and either prove or debunk it. In the meantime, must the Ginger Savelys of the world let their patients go down the drain even though there is a treatment that has appeared to help many? Wouldn’t that be unethical in itself?
Wasn’t nurse Savely kicked out of Texas because of her indiscriminate and careless use of antibiotics? What are we suppose to turn to once all the real pathogens are resistant to them? And now doesn’t she work for a doctor in San Francisco, a member of the Morgellons Research Foundation, that was caught lying on his research in order to abtain a grant? He’s not the only member of the Morgellons Research Foundation that has been caught at less than honorable practices. And Savely is a member of that same team. Should we not judge people by the company they keep, especially when their association is voluntary?
Moving right along… There’s thousands of so-called Morgellons micrographs. Just where are these mites hiding? Why are there no artropods, no infections, no infestations, no fibers diving into people’s skin, striking them like rattlesnakes, etc.. etc.. etc.. Huh?
Tall Cotton
TC
Thank you for sharing your fondness of Nurse Savely with us, DJ. Concerning your friend……
Now, did your friend’s veterinarian tell her that her bird’s mites aren’t bird mites, when it was diagnosed and treated? Or, do you know if the doctor’s not specialized in the treatment of tropical birds? They should have given your friend advice on ridding the mites from the surroundings inside her home. If the poor bird is still heavily infested, return trips are needed. Vets specializing in treating exotic pets should be listed in your yellow pages. If your friend is broke, and can’t care for her pet, can you loan her the money so she can get it help? If things aren’t looking favorable for it, and they may be grim enough, already, please talk your friend into selling it, or relinquishing it to a pet shop or local animal shelter. Were mites also on the dead rodents inside her attic? Are you meaning that your friend, and her bird, survived pesticide bombs? If you mean that lice did, well, of course. Please correct me if I’m wrong, but I don’t know of any pesticide bombs that are made for lice. Do you think your friend even read the label? Pesticides are carcinogens, and that’s why the products caution that it’s a direct violation of federal law to misuse them outside of the directions on the label. It concerns me that you mentioned that your friend is desperate and has lost a lot due to this situation. I’m glad she has you for a friend, and I think you can get the mites taken care of, and things will improve for her. She probably couldn’t afford treating the bird adequately, or misunderstood how to treat it, or something. Remember, if she’s broke, please talk her into finding another home for her bird.
I’m sorry, DJ. I didn’t even touch on anything pertaining to what you said about “morgellons disease”. But, I’m not a skeptic, and, so, you weren’t addressing me with all your “let us this” and “let us that”. The CDC was forced into involvement with this. It’s not exactly a tiny matter that they’ll “either prove or debunk”. It’s delusional parasitosis, and they have to find a way to serve a section of our society that will not treat for it, since they asked for their help. I hope that isn’t what you, or your friend, have.
Yes, it appears that Nurse Savely has been listening to some of her Morgie patients and confirming their outlandish exaggerations. She seems to know that the Morgie’s greatest concern is to be believed, and she seems to place that need above her own desire to be honest. But then, 500 dollars a pop, isn’t exactly beans. DJ, what are you doing to get that bird into a safe environment. Take it to a vet and get it cleaned up, then find it a safe place to live.
TC
Small-
Your 0 dollar input is beans. Crap is not a number.
Starlink,
Do you have any idea what the fuck you are talking about?
TC
NORMAN!!!!! TRUTH IS PRICELESS AND IT IS FREEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEE.
Oh, you apparently want me to pay for the bird’s bath. Well, I would if I knew it was necessary in order for it to get one, and if I knew the money would be used for that purpose, and if I knew that the bird would be placed in a clean environment. Morgies don’t have any business with pets. The only time they mention one, it’s being neglected or mistreated.
TC
Wonder if eats GM corn?
I hope DJ will return with an update for us on the lice, or pesticide poisoning, situation.
Sorry, I’d meant mites, like DJ had said, but I see I’d switched over to saying “lice” previously, too. If you check back in here, DJ, consider bird lice, because you don’t sound too sure about mites. Good luck.