Tuesday, May 23, 2006

Chat with Savely on My San Antonio

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?

19 Comments:

At 4:39 PM, Blogger Smileykins said...

The evil nurse

 
At 9:28 PM, Blogger Tall Cotton said...

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.

 
At 7:52 AM, Anonymous Anonymous said...

They're all the same, down to the last minute detail? Wha!??!? This blows mey mind.

 
At 2:04 PM, Blogger Smileykins said...

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.

 
At 2:11 PM, Blogger Smileykins said...

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.

 
At 5:40 PM, Anonymous Anonymous said...

http://www.ktvu.com/news/9264350/detail.html

 
At 2:52 AM, Blogger Smileykins said...

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

 
At 3:20 AM, Blogger Tall Cotton said...

Wacky Wymore went to school,
There he broke the Golden Rule.
He was always cutting class.
Earned the title, "Quack, quack, quack!"

 
At 3:38 AM, Blogger Smileykins said...

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".

 
At 5:37 PM, Blogger Tall Cotton said...

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".

 
At 3:02 PM, Anonymous Anonymous said...

"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.

 
At 2:46 AM, Blogger Smileykins said...

Don't freak out, just get your dad out of the study, now, if you're all worried. Everything will be okay. Be calm.

 
At 6:49 PM, Blogger abac68 said...

Calm down smilykins - take your meds.

 
At 1:46 AM, Blogger Smileykins said...

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.

 
At 8:11 PM, Blogger abac68 said...

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 Margellons right now?

 
At 8:13 PM, Blogger abac68 said...

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.

 
At 8:27 PM, Blogger abac68 said...

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

 
At 10:28 PM, Blogger abac68 said...

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
www.healthsciences.okstate.edu/morgellons/index.cfm

 
At 9:53 PM, Blogger Tall Cotton said...

I thought you Morgies didn't believe anything that doctors say. Why would you believe Wacky Wymore?

 

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