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

----------
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!

----------
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

----------
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.

----------
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

Neverending flu-like symptoms

Mom,

I don't know what I have, except that I'm in very bad shape, it doesn't seem to be getting better, and I am starting to have some grave concerns. Presently I don't have the strength, or clarity of thought to do anything but ride it out, and even that is excruciating and intolerable. I just need this to END! As I said, I don't even have Tylenol. (I HAD a full bottle of Ibuprofen 600, previously prescribed to me, that someone seems to have absconded with) I don't know why, but I have had this horrible taste in my mouth all week. Quite nasty. Water sure doesn't guise it.

I am not weighing myself, but am aware that my weight must be dropping quickly. I am starting to wonder how long I am capable of continuing this way. (probably longer than I can imagine)

What I could really use right now is some excedrin or something like it, LOTS of juice, and or Soda, and soft food of some sort.

Any chance you'd be willing to overnight a gift card from Walgreens or Rite Aid? (cash simply disappears in the post around here unfortunately) I could get some headache medicine, juices, something soft to attempt to eat, and some razors. I could probably even pick up a cheap set of hair clippers. (mine broke last month, and I am starting to look like the wild man from Borneo, between my hair and my unshaved beard)

Then the only challenge will be getting myself to the store (no small feat). Perhaps I can send someone with a list and the card.

My roommate Mel finally took notice of my plight yesterday, and brought me several glasses of water, and some tomato soup. I was unable to eat very much of the tomato soup, as it made my stomach "burn", as you heard the result of when I called you this morning.

As soon as I am well enough I need to go to GA to apply for food and cash assistance which I am told I would qualify for, (the food stamps I would get same day) but there hasn't been a moment this week where that has been the case (to say the least). It is a several hour-long project stepping foot in the door of that office anyway, and I'm not feeling well enough for that at all.

Oh, one more thing, the results of my blood tests performed at the ER should be ready now, although I have no idea what tests were performed. I was told to "check back in a week" to get the results. I DO know that while the ER Dr. was much more professional than the last guy, he was quite skeptical of the idea of parasitic infection (and stated such) simply in general due to its "rarity", so who knows if any tests for parasites were actually performed.

Anyway I have to get back to bed. Feeling nauseous again, which is excruciating if I am not hydrated enough for it to be productive (dry heaves), as I have learned the hard way, so I'd better rest.

I'll check messages again when I can.

----------
From: Me
Date: Sat, Feb 24, 2007 at 4:59 AM
To: Mom

one more quick update on a positive note: after going downstairs I was famished, and decided to reheat the tomato soup that Mel made me. I was able to sip it slowly in its entirety, and it seemed to go down okay this time. Feeling brave I then prepared a BLT, being careful to cook out all the grease from the bacon before using it. (in the microwave) I was able to eat half of this, and decided to save the rest for later rather than overdo it. I feel a LOT better to say the least, and my headache appears to have let up for a bit as well.

Now that my head isn't hurting so badly, perhaps I can attempt TV, which may help me take my mind off my discomfort.

At some point I will try to assess the damage to my Dell. I have brought it back from the dead many times before, (including once after the entire computer was smashed into a dozen pieces on a concrete floor, requiring 2 weeks of soldering work to make it functional again). The burning question is what components will require replacement this time, or has their time in the open air been enough to undo the damage caused by the iced tea (doubtful). The hard drive went down making a horrible noise after the tea was spilled, but then that's a noise that most things might make when you pour liquid into them while they are spinning at 5000 rpms or so. Generally not considered a good thing to subject a hard drive to though.

I wonder if Nurse Practitioner Ginger Savely's office is open today? I think I'll look into that before I log off Bob's computer.

BTW, How far are you from the status of "Nurse Practitioner" yourself? Not a title you hear too often. Is that because they are basically Doctors that differ in practice or doctrine officially sactioned by the AMA? If so, I like the sound of it already! A Doctor capable of open-minded and independent thought!

The ER Doctor at USCF Medical Center who mentioned "Morgellons" to me, albeit skeptically, but obviously for a reason, also mentioned a doctor who had left his/her practice at UCSF to pursue treatment of this "disease". I wonder if that could be Ginger Savely?

----------
From: Mom
Date: Sun, Feb 25, 2007 at 10:24 AM

David

I only have an associate (two-year) degree in nursing. A Nurse Practitioner is like a nurse with a Master's degree, specializing in some area of medicine. They are licensed to practice medicine in that area, including prescribing medications, under the supervision of a physician (meaning the patients and what they do is reviewed and discussed on a regular basis with a physician). You do hear the title "nurse practitioner" all the time now (at least in Arizona), because if you go into a hospital or doctor's office, chances are the first person you'll see for treatment is a nurse practitioner (NP) or physician's assistant (PA), which is a similar thing, only that person is not a nurse, just like an assistant doctor. A PA also has a Master's degree.

Fill out those forms and send them back so you can see Ginger Savely. Then you won't have to deal with skeptical people anymore who don't know what they're talking about.

I think you need me to come to SF and help you take care of getting things done, such as getting down to get your GA application and your check, getting your lab work results, etc. When would be a good time?

Love, Mom

----------
From: Me
Date: Sun, Feb 25, 2007 at 4:32 PM
To: Mom

I think you are right about coming here. I need help.

I am beyond my wit's end. Please come soon. When are you available? Don't make hotel reservations for more than a night or two. Once you get here I can help you secure a room for the duration of your stay in the $50-$60 range. In fact, I can possibly find a 2 room/and or bed setup of around that price. I could really use a break from this place if that works for you.

d

First Realization of Possible Parasitic Infection

From: S.B.
Date: Fri, Feb 2, 2007 at 10:41 AM

How are you doing? I haven't heard from you in awhile. --S.

----------
From: Me
Date: Sat, Feb 3, 2007 at 10:31 PM
To: S.B.

Sorry for not communicating in a while. Things are quite miserable.

It seems that I have some sort of worm-like parasite that I no doubt contracted from my cats or my former dog. (possibly years ago)

I became aware of this fact back in early January when a multitude of the parasites attacked one of my eyes for some unknown reason. The horrifying realization came when I noted that they seemed to be coming from INSIDE my eyelid.

Trying to extricate them proved to be a hazardous and fruitless endeavor as it resulted in damage to my eye both as a result of my efforts, and due to the fact that the "worms" (resembling very thin fibers) seemd to be burrowing into my eye, which was extremely painful to say the least.

I immediately went (by bus) to the Tom Waddell clinic, and sat painstakingly for 6 hours in their dirty little waiting room surrounded by hunched over, crazy homeless lowlifes, all of whom wanted to "chat".

I finally got in to see the "Doctor", who interrupted me 20 seconds into my description of the issue, before I could even BEGIN my explanation of what it was that I felt I had, by him telling me that he didn't see anything present that he could diagnose. I explained that they were transparent/translucent, difficult to see, and happened to NOT be crawling out of my eye at present, but seemed abundant in numbers, and would certainly show up under a microscope, and or with any other type of test they must have for such a thing.

He repeated that he saw nothing he could diagnose, then he gave me a number for Mental Health Services and fled the room. Two orderlies showed up shortly thereafter to expedite my departure.

I have never felt so humiliated in my life.

Shortly after I arrived home, after another very long, very uncomfortable bus ride, several small maggot like shapes (that were not moving) began to drop out of my left eye, just as my brother dropped by to say hello on his way back north to his home (he had been in AZ and L.A.) He was quite horrified to see my condition and situation, and since his visit my whole family calls on a daily basis to prod me to go back to another doctor or ER.

I had enough trouble getting myself to see a Doctor the first time, and find the possibility of a repeat occurrence of what I went through to be an unfathomable idea.

I have pretty much been locked in my room since then, coming out to eat and use the restroom only.

I have been researching various parasitic candidates online, but am unable to lock it down to one. There is very little information available. Most of what I find comes from Vet websites, all of which strongly warn against the danger of human infestation from pets (although when I call a doctor's office they act like I am crazy when I mention that I believe that I caught
a parasite from my pets).

It is my birthday today, but I have not left my room except to eat and urinate. I am miserable, depressed, extremely uncomfortable at all times due to the infestation. (they are now present in my eyes, ears, and nose, and seem to have a strong presence in my upper respiratory tract) In spite of their ever increasing presence, they are still not easy to see due to their size, (they are extremely thin - thinner than hairs), although I have identified some specimens under my skin that are several inches long. Most are translucent, but some seem to have a black or blue tint to them. (I am certain they are not veins) I suppose I am waiting for their presence to become so apparent that I am ensured to be taken seriously the next time I find enough inner strength to make it down to an ER somewhere (I shall NEVER return to the Tom Waddell clinic again in this lifetime.)

Sorry things are so glum. I didn't want you to think I was avoiding you for no good reason.

Wish me luck in finding a way out of this mess before I suffer any permanent damage.

Hope you are well.

D

----------
From: S.B.
Date: Mon, Feb 5, 2007 at 1:18 AM

David,

I am concerned by your e-mail. I'm not familiar with the Tom Waddell clinic, but I think you should immediately try to see a doctor somewhere else. What you are describing is either a parasitic infection, which can be life threatening if left untreated, or as the Waddell doctor implied, a psychological issue that is equally dangerous. Either way, you need to be treated as soon as possible. I would recommend following up on the Mental Health referral, because they will have to rule out any physiological condition before they can treat you psychologically. That means you can take aim at two birds with one stone by starting there.

Please keep in mind, that many doctors are not educated outside of their initial area of study. They expect to only see routine things, and therefore often only "let" themselves "see" routine things. That means if you have something rare, it is hard to get a diagnosis. I saw almost a dozen doctors before i was finally diagnosed with dermatomyositis. All of them were sure what I had was either psychological or not important. Only the last one recognized it as a life threatening condition that would have killed me eventually. It was hard to make myself keep seeking out new doctors, but it probably saved my life. There is nothing to be humiliated or threatened by, except if you stop seeking an answer and let this get the best of you. If you need help, tell you family you need intervention: literally, that you are too ill to seek help yourself. I wish I was closer to help myself.

David, I want you to consider the possibility that what you are experiencing is indeed psychological, or perhaps both psychological and physiological combined. Based on your e-mail, I don't think you sound to be in a very good state of mind. A long period of unemployment or other setback can cause that. You seem to recognize that you are depressed, but you need to know that severe depression can result in both physical manifestations and hallucinations. I know, I'm in the same position myself. However, doing nothing is not an answer, it is not a solution. And, seeking help and treatment is nothing to be ashamed of. See a psychologist, you may be surprised, s/he may tell you you are perfectly normal and just need an antibiotic and a prozac prescription. I've been on anti-depressants since the stroke and they've been trying to figure out a way to get me onto ADD meds as well, but I keep having very severe side effects (heart problems), which causes them to keep pulling me off of the drugs, usually right after I've started feeling better. In the meantime, I'm on a roller coaster myself. Fortunately, I have a safe harbor here with my family. Your priorities needs to be to get a definitive diagnosis, get treatment, and find yourself a safe harbor of your own. If that is with your family, do it! If it is in a shelter, or clinic of some sort, do it! Hiding in your room is not going to solve the problem; just the opposite, it is going to let it get worse. And, you are too smart to let that happen. Remember who you are.

BTW, when you see doctors, don't try to diagnose for them, they hate that. Let them be the smart ones. Just tell them your symptoms. Don't even give them the opportunity to make you feel crazy or stupid. Just tell them the symptoms, in easy, simple terms. If you have a sample of something that came out of your eye, save it in a plastic bag and take it with you to the doctor. DO NOT however try to dig something out of yourself. If you are indeed hallucinating, then you will only injure yourself. David, this is something you can beat, but it will be alot harder to beat if you are blind. Recognize that you may not be in control, that your judgement and perceptions may be very distorted, and then address the limitations that implies. If you have to throw away tweezers and knives, do it. if you have to take the door off your bedroom and curtains off the windows to keep yourself active and engaged, then do it. If you have to blast dance music to keep you awake, then do it. You control the problem, don't let the problem control you.

Happy Birthday (belated). How old are you? Wish I was there to take you out for a celebration.

Let me know how things are progressing. Write me back with a plan for what you are going to do this week. If you want me to get in touch with your family (your brother) for you, send me their contact information. Also, please send me your physical address, phone numbers, etc. You have to be available and willing to interact before others can help you, so make sure as many people know where to find you, how to reach you, etc. as possible. Ask for help.

Keep you chin up! and keep in contact.

S.B.

PS: So what do you think of the iPhone?

----------
From: Me
Date: Mon, Feb 5, 2007 at 4:48 PM
To: S.B.

A psychiatrist is about the last person on the planet I would go to see right now. I've been seeing them all my life (for ADHD and difficulties I had in my childhood) and I am none the better for it.

The best was when one doctor prescribed Melaril (a sedative that zonks you into oblivion) to try to "slow me down" a bit. I only found it useful to attempt suicide with during my late teens. (by swallowing the whole bottle)

I didn't rise above my problems until I finally cast off their useless "help & advice", and decided to help myself. I'm not saying things have gone perfectly, but nothing they were offering was making it better. I finally decided to simply fight my own demons to the best of my abilities, and I've done a pretty good job up to now I'd say.

If I am hallucinating, then my brother is too. Keep in mind that things were visibly popping out of my eye when her came to visit me.

I didn't say they are invisible, just hard to see. They are getting easier to see however, as they increase in numbers. (something that alarms me as much as it may helps with diagnosis)

What I think I need is a good parasitologist. There are a few over at UCSF, but I have no funds whatsoever.

My mother has offered to fly in and take me to a "specialist", which I have resisted up to now. I really didn't want to involve her, but have recently decided that is my best course of action presently. It's humiliating to need my "Mommy's" help at my age.

She is in Brazil right now for my Brother's wedding, but plans to come here as soon as she returns. In the meantime, I am trying to work up the strength to get myself into the ER at UCSF. I will take your advice about just mentioning symptoms. You are right, the Doctor at Waddell made several sarcastic comments about my attempts to "diagnose" my own condition. (isn't that what any intelligent person would attempt to do though?) It bothers me greatly not being able to lock it down to one identifiable source. In the past I have only sought medical assistance AFTER I diagnosed and identified the source of my own illness, and only then if it was something I could not cure with OTC drugs, home remedies or "grinning and bearing it" 'till it passed.

D

----------
From: S.B.
Date: Mon, Feb 5, 2007 at 6:05 PM

Please get your mother up there as soon as possible, so you have someone else to lean on. It may not be ideal, but its something. In the meantime, try to "capture" some samples and freeze them. Then take them with you when you go back to a clinic. Please keep me informed on how things are going. --S.

----------
From: Me
Date: Mon, Feb 5, 2007 at 6:08 PM
To: S.B.


Hi S,

I imagine you'll be happy to know that your letter prompted me to email a local Parasitologist.

I described my symptoms in depth, and asked for his advice. I will let you know what happens.

I am also considering paying a visit to the UCSF ER tonight, fyi.

I do appreciate your concern. Youu are the only friend I have shared these details with. I let you in on my situation, I think subconsciously, because I knew you wouldn't stand for my inactivity, and would light a fire under me until I did something. I also imagine that you have some sense and appreciation from a standpoint of anxiety alone, of how difficult this is for me to cope and deal with.

I think the iPhone is AWESOME and am dying to have the resources to own one someday!

P.S. I have a few samples already.

Btw, the parasite is normally transparent, and difficult to see, but application of ink or paint (I discovered by accident) changes this. After some spray paint was accidentally applied to my arm, the specimens there became much more visible. Less than a minute later after I found little flecks of paint surrounding my eyes. I am certain I did not touch my eyes, nor was any of the paint on my hands.

Also, I have pretty dark circles under my eyes. (I have always had a problem with this due to my complexion) It gets much worse if I don't get enough sleep. My solution for this over the years has been to apply a small amount of yellow tinted concealer under my eyes to counteract the blue circles. Recently when I attempted this, the concealer I had just applied, moved to the other side of my eye. Freaky stuff, I know, but unfortunately real. (I have noted that the organisms seem to cluster around the edges of my eyes)