Sunday, February 25, 2007

Seeking Help

Dear Nurse Practioner Ginger Savely:

I have forwarded the following message (quoted after this message) that I previously addressed to a parasitologist at USCF. I never received a response.

I came across your name recently on the internet, and was delighted to read about your work.

I live here in San Francisco, and my health is inexplicably deteriorating rapidly.

A recent trip to the USCF ER proved fruitless, although the ER Doctor for some reason, in a very brief departure from his skepticism, happened to mention the word "Morgellons", a term I had never heard before. He "could not see" the fibers present around my eyes, which astonished me (because myself and other people can see them), although he did say my eyes appeared to be "infected".

I wonder if this may be related to Strongyloides?

Please contact me at your earliest convenience.
Sent Mon, Feb 5, 2007 at 4:47 PM
To: Dr. Locksley

Dear Dr. Locksley (Parasitology Department, UCSF Medical Center):

I ran across your name and contact info while searching for answers online about a condition I have developed. I am hopeful you may be able to steer me in the correct direction.

I believe I have contracted some type of worm-like parasite that seems to be infecting my upper respiratory system, and I believe has been responsible for at a couple of recent ocular invasions. The parasites, which resemble very thin hairs or fibers (that move), and occasionally small flesh colored lumps, appear to be most present in or around the region of my eyes, ears, and nose, as well as above and below the skin in many other regions of my body. One trait I have noticed is that the parasites seem to gather around the edges of my eyes, seeming to attach themselves to my eyelashes (and other follicles). I have also noted their presence in my urethra and my stool.

Am I describing anything you are familiar with?

Can you please suggest an appropriate course of action? I have already visited the Tom Waddell clinic (after my first ocular invasion) and let’s just say that the Doctor there didn’t seem too familiar with parasitic infestations, beyond those created by mental delusions.

I am certain that this is not delusions of parasites, and have physical evidence, and people who have witnessed physical aspects of these 'parasites', to support me in that regard.

Can you please suggest an appropriate course of action? Would it be apropos for me to visit the UCSF Medical Center ER?

Thanks in advance for your time and consideration.
----------
From: Ginger Savely, FNP
Date: Sat, Feb 25, 2007 at 2:11 PM

Dear David -

I have attached the necessary paperwork to become a patient of Ms.
Savely's. As soon as we receive your completed forms we will contact
you by email to offer you an appointment.

By the way, Morgellons is NOT strongyloides - this has been proven at
the DNA level.

Looking forward to hearing from you,

Office Manager for
Ginger Savely, RN, FNP-C

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From: Me
Date: Sun, Feb 26, 2007 at 4:33 PM
To: Mom

I just received the forms from Ginger Savely, filled them out and faxed them in.

WOW! Very enlightening. The symptoms listed on the forms describe EVERYTHING I have been dealing with down to the most minute detail!!! from the mental fog to the fatigue, to the fleshy lumps on my head! I have never seen ALL of my symptoms listed in one place before!!!

Any remaining doubt that I may have had that Morgellons is what I am dealing with varnished while I was filling out those forms.

BTW, Unfortunately a $500 deposit is required (by credit card) to even MAKE an appointment!

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From: Mom
Date: Sun, Feb 26, 2007 at 5:06 PM

David

How do you know how much treatment costs? I don't see anything about that on your communications.

Mom

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From: Mom
Date: Sun, Feb 26, 2007
To: Ginger Savely, FNP

My son, David Franklin, who lives in San Francisco and is 36, emailed you recently about symptoms he has been having for some time and which have steadily been getting worse. You sent him some forms about Morgellons Disease (Morgellons Questionnaire, Disability Scale, and Clinical Signs and Symptoms). He has emailed me that in order to get treatment through your
office he will need to bring in an initial payment of $500, plus $800 for lab fees, plus any prescriptions deemed necessary, plus $250 for each subsequent visit. He said he read this on one of the forms you sent.

David has been unemployed for some time due to his illness, and he needs to apply for
indigent health care, if he qualifies for that. I don't know what the program is called in California (I live in Arizona). Is it Medicaid? Right now he has no job, no money, no car, and no health insurance, but he is too ill to work. Does your office have a social worker or someone who can help him apply for benefits like this? If not, do you accept patients who cannot pay, or do you negotiate your fees? Do you ever accept patients and negotiate a repayment schedule based upon their ability to pay in the future?

I want to come from Arizona to help David in any way that I can, such as driving him to an appointment, talking to a social worker or members of the health care team, or picking up prescriptions for him. However, I will only be able to stay for a couple of days at a time so I need to schedule as many things as possible during my visits. Any assistance you can give me with these questions would really be appreciated.

Thank you,

K.F.

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From: The Office of Ginger Savely, FNP
Date: Monday, February 26, 2007 7:03 PM
To: K.F.

Dear K - Unfortunately, for many complex reasons, we do not take Medi-Cal (that's what it's called here). We have at least 5 patients a day asking for free care or sliding scale. It's impossible to choose and not being able to handle all of that free or low cost care we simply can't take any. I am so sorry. Please write to ccaseyrn@hughes.net for advice. She is the nurse who works with Ms. Savely and also maintains an email counseling service for Morgellons patients. I think she may know of someone in Oklahoma who could help, but I'm not sure. Good luck to both you and your son.

-B
Office Manager for Ginger Savely

----------
From: Mom
Date: Mon, Feb 27, 2007 at 3:55 PM
To: Me

David

I think the priority for my first visit should be to get you enrolled in as many social services that you are eligible for as we possibly can, especially Medi-Cal. That way you'll have a way to pay for medical services.

Since Ginger Savely's work is controversial, according to research I've been doing on the internet, I'm not sure her services are covered even by Medi-Cal. Therefore, it might be better to take you in to a family practice physician whose fees would be lower for an initial visit. That way I would be able to afford the out-of-pocket expense for the doctor and medication, and you would be able to get started on some treatment, such as something that would help your itching and whatever else the doctor thinks you need. You should certainly tell the doctor (or nurse practitioner, if that's who you see) about all of your symptoms (you could fill out that questionnaire you got from Ginger Savely's office and give them that--we can make copies of the form you fill out to use in case we eventually need to see more than one physician), and they may need to consult with someone else or refer you to someone else for follow-up.

Bob and I certainly can't afford to pay $500 for a visit plus $250 for subsequent visits, especially if treatment takes an extended period of time with her methods. If you read some of the blogs about her, many people who have been treated by her claim that she is a total fraud, ripped them off, they got treated successfully finally somewhere else for much less money, etc., etc. Others, of course, swear by her treatment and even continue to come to see her from Texas, where she was previously. But those are people who can afford to pay her.

Bob did some research on getting qualified for disability under Social Security, and it is really difficult. You have to be certified by several physicians under the SS criteria, and you have to go through a few appeals processes, so of course you would need to be able to pay for those doctor visits, or have insurance that pays for them, before you could get to that point. That's why getting you enrolled is so important as a first step.

Love, Mom

3 comments:

  1. dave, are you still alive? your blog has ended many years ago. i am in the same situation as you are (or hopefully was), and can't find a doctor to treat it. please write me at datajb1@yahoo.com.

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