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Archive for the ‘Diagnoses’

The Morgellons-Lyme Connection

July 08, 2012 By: kajay Category: Diagnoses, Lyme

The link below is to an excellent article from Marc Neumann’s website, about not only the Morgellons-Lyme connection, but also a treatment path. It is worth checking out. What I like about this site specifically is that it suggests–

  • DON’T USE THE “M” WORD! Focus instead on possible contraction of Lyme from a tick bite.
  • Do treat both the spiral and cystic forms of Borrelia (Lyme) at the same time.
  • Do treat co-infections from protozoans, fungi and viruses (examples: Bartonella, Babesia).

MORGELLONS & LYME DISEASE TREATMENT OVERVIEW

http://www.morgellons-research.org/morgellons/morgellons-treatments.htm

Venus Flytrap Does WHAT?

May 28, 2012 By: kajay Category: Cures?, Lyme

Can Venus Flytrap Cure Cancer and Other Chronic Diseases?

Note: The following is excerpted from an article posted in a Lyme group:

“What if I told you that a plant that captivated your interest as a child is a world-class healer?
And what if I told you this plant could heal cancer, chronic fatigue, Lyme disease,
and a multitude of other illnesses?

“I know, if something sounds too good to be true, it probably is. But not in this case!
I’ve used this product for many years and I’ve seen firsthand how it works.
Dr. Dan Kenner of California also has personal and observational experience
of its power and he says it “staggers the imagination.”

We wanted to know more about this, and so searched for the name given to the Venus Flytrap in the full article, “carnivora,” plus two names that appeared in the article, including “kenner.” One that is pretty good is here: http://thinkbeyond.biz/?p=1349. The author of the article recommends “You can get Carnivora directly from the company, Carnivora Research, Inc., 866-836-8735, or visit www.carnivora.com on the Internet.” Is he selling it? Possibly. Still, this product sounds worthy of investigation.

Scott’s Lyme Resources – a Labor of Love

May 01, 2012 By: kajay Category: Best Practices, Lyme, Rife, Scott

Scott has collected articles, posts, news etc and organized them into searchable folders and sub folders. He offers the results of his labor of love free for you to download, or he will ship you a copy of the CD. For more information or to download Scott’s material, go to www.lyme-resource.com.

Scott also refers you to the Lyme-Rife Yahoo group, which can be found at http://health.groups.yahoo.com/group/Lyme_Rife/. It is a discussion group for those fighting Lyme Disease with Rife and other electronic technologies.

Diagnostic Procedure for Lyme

April 25, 2012 By: kajay Category: Diagnoses

The Lyme literate MD (LLMD) I visited for the first time this week used clinical methods to diagnose me with Lyme and to rule out Babesiosis. He ordered lab tests to identify or rule out other causes of some of my symptoms.

I could see him checking off things in his mind:

 

√  Check, Night Sweats – could be Lyme (but not necessarily).

√  Check, Restless Legs Syndrome – could be Lyme.

√  Check, Pruritis (“cutaneous involvement” aka rash, crawling, biting).

√  Checkmate: Twelfth Nerve Palsy.

 

I looked up Twelfth Nerve Palsy. Based on what I found, the average person looking it up would consider it alone, without considering the other three symptoms. The easy diagnosis would be to assume that I had had a stroke or that I have cancer. My doctor considered them along with the other symptoms, and they told him something quite different, and quite definite. The doctor seemed a little surprised and very pleased to find the palsy, and immediately stopped examining me and diagnosed Lyme.

Then he conducted two in-office wet swab tests (nostril and scalp) and ruled out yeast, which had been one of the possible causes of my night sweats. He ordered staph, tuberculosis, mycoplasma, and Western Blot Serum tests, which I immediately went and had done at the local LabCorp. He also instructed me to obtain a chest x-ray. The test results will fill in some more blanks in his diagnosis. After 30 days, I am to check in. I return for a second appointment 60 days from now.

The doctor prescribed Minocycline 1 mg to treat the Lyme, and said it will also help with some co-infections.

I asked him if he has ever taught other doctors how to diagnose and treat Lyme. He said he has tried. He did not elaborate.

What kind of diagnostic tool do doctors currently use (plug in symptoms, out pops a diagnosis)? If so, and I am assuming there is, then would it be possible and/or better to design a Lyme plugin for an existing tool? Or would a standalone tool be the only or best option?

If this idea interests you or if you can answer these questions, please contact me at kajay@morjella.com.

Thank you, and have a nice day.

LLMD First Visit April 2012

April 25, 2012 By: kajay Category: Lyme, Minocycline

I wish I had taped my office visit with my new Lyme literate MD (LLMD). I learned so much from him but cannot remember it all. Here is what I remember so far. I will follow up later and post results. My next office visit is scheduled for two months from now.

I. SYMPTOMS

A. LLMD asked what symptoms brought me to him:
  • Pruritis (skin issues including crawling, lesions, biting; possible causes – staph, yeast, mycoplasma, leprosy, others)
  • Night sweats (always a sign of infection; possible causes staph, tuberculosis)
  • Restless legs syndrome (related, I think)
  • Severe spasms in feet, sometimes traveling up legs to body — terrifying

B. LLMD asked me if these symptoms are or have been present:

  • Brain fog (no)
  • Headaches (no)
  • Chronic fatigue (no)
  • Muscular aches (no) or spasms (yes)
  • Overall aches (no)
  • Sinus issues (yes until F-5 Mar 2011)
  • Lesions (yes until F-5 Mar 2011)
  • Depression (yes, but not since 1997)
  • Bulls eye rash (Once in 90’s, again in 2009)

II. NEURO-MUSCULAR TESTS

A. Standing

  • He had me walk three different ways.
  • He had me stand and allow him to just observe my face (tells a doc a lot about us)
  • He held my shoulders and leaned my body in every direction, alternating directions to see my body’s neurological response.

B.  Sitting:

  • He had me push/pull with feet, quads, arms, shoulders etc.
  • He had me stick out my tongue and relax it, but I felt it jumping!
  • You have Twelfth Nerve Palsy, he said, and at that point he diagnosed Lyme.

III. CAUSES

A. Pruritis. Possible causes: Staph, yeast, mycoplasma, leprosy, others.
B. Night Sweats. 100% due to infection of some kind. Possible causes: Staph, yeast, mycoplasma, tuberculosis. I asked why Evening Primrose Oil (EPO) controls. He asked what form I take and told me EPO contains antibiotics and many other beneficial compounds with various properties, but said studies have not been done to break down what does what. He pointed out that though the EPO controls the symptoms, it does not cure the infection casing the night sweats.
C. Restless Legs Syndrome. I asked if RLS could be related to Lyme  or Morgellons. Can’t remember what he said, but I think it is. He said some/all co-infections would clear up with use of the Minocycline. Once I’m done with that, we will look and see what is left, and deal with that.
D. Severe Spasms in Feet. Same discussion and conclusion as for RLS. Seemed fine with my continuing to take bone supplement to control spasms, which seems to be tied to dosage levels of my RLS medicine, Requip, as well as to my level of hydration, as in, when I am well hydrated, the spasms occur less often.
E. Bulls Eye Rash. Occurs in only a small percentage of cases. I have had at least two, years apart.

IV. CO-INFECTIONS

Only remember discussing the ones I have seen discussed here. I know he covered others, though. Feels most will be addressed by the antibiotic he prescribed for the Lyme.
A.    Babesiosis. Does not believe I have this.
B.    Bartonella. Can’t remember if he thinks I might or might not have this.

V. ANTIBIOTICS

Lyme is an intracellular (within cell) disease, but most antibiotics do not work within cells, only outside them, and so will not touch Lyme.

VI. ABOUT LYME

  • 112 known varieties of Lyme, each with a unique set of outcomes. Many never know they have it. Others experience debilitating symptoms almost from the moment of the bite.
  • Turkey hunters sit against trees. More tick bites than they know about.
  • 20% of ticks carry Lyme – not just deer ticks. That means, for every five ticks that bite a turkey hunter, one carries Lyme.
  • 100% of turkey hunters will contract one of the varieties of Lyme, but many will never know (the lucky ones).
  • Patients previously diagnosed with delusory parasitosis but then treated for Lyme have gotten well from the Lyme regardless of their mental state.
  • Ticks, like snakes, are active most of the year, if not all.

VII.  DIAGNOSIS

  • Diagnosis of Twelfth Nerve Palsy confirmed I have Lyme.
  • Immune system healthy.

VIII. PRESCRIPTION

Minocycline 100mg oral capsule, one a day with food, without calcium. Take yogurt and or probiotics. He instructed me to get another chest x-ray (I do that annually anyway since we lost one of our beloved dobermans to histoplasmosis). He wants to rule out tuberculosis as the possible cause of the night sweats.

IX.  CONCLUSION

The most important thing my new LLMD told me today is that Lyme is curable. He said that once we clear up the infections associated with Lyme, that may take care of my other issues (Morg). The second most important one is that (and he smiled when he said it) I am definitely not crazy.That’s a relief :-)Will post again when I have more news.
Kajay

Neon Starfish

February 06, 2012 By: kajay Category: F-Zymes, Morgellons, Research

I use 60x magnification all the time. 100x is too big, 30x too small. 4x only helps for some of the monsters I’m getting out of me since I started MMS a couple or three months ago.

I have one of these VERY cheap portable lighted microscopes in every room, and an inexpensive Digivision digital next to my computer. The Digivision fits my hand, but I hate using the Digivision’s little red button to snap the shots–too much motion. So I use the scanning software built into Photoshop Elements 2.0, which came free with my Canon Lide50 scanner. It lets me hold the scope in one hand and click ENTER on my keyboard with the other.

Update 6/2011: I cannot make any of the drivers that have worked with my Digivision in the past work now. I guess until I can afford another camera (right now the F-5 is my priority), I am out of the digital microcam business.

Sadly not only do I not SEE as clearly through the digital, but the supposedly sharp 480×640 images are even worse. Thus a lot of things I have watched unfold through one or the other microscope I cannot prove, so I report what I saw, but as in the story below, I never try to claim anything as a valid conclusion, and I allow for the fact that if I saw it but I cannot show it to you, I have to be prepared for the fact that you may not believe me. It doesn’t change my own mind about what I saw, LOL!

Such as the still incredible to ME even story of “blue boy,” the globular baby blue fiber critter whom I was originally observing on my lint roller (I leave them on the roller, that way I have a handle and can turn them), which is when I saw that rascal spin around, all of his little black legs still stuck to the sticky sheet, flatten his body out to become a smaller target, or just because twisting only his body compressed his body, hadn’t thought of that before, like twisting a hot water bottle flattens it, forcing the water out…and thrust the end with two black dots on it toward me (the other end I had already observed had a black C or anus). Little rascal thought he could take me!!! Still funny to me.

Also there was the day I was idly looking at the lesion on my arm that won’t go away. It changes shape but is hard, intact, like a permanent fixture. It is not raw and red or cratered like the other kind of lesions we get. Anyway, I was watching it change its overall shape and decided I’d get my digital microscope and get some stills, save them as JPGs, then pop them into Windows movie maker and save them as a video (much smaller file than actual video).

However, when I turned off the microscope and started processing the photos, I saw something weird that I didn’t notice through the microscope. So I used CTRL+F6 which allows you to toggle through all open files in most any program in the order they were opened or scanned, and did it fast so I could see any motion. What I saw was two parallel bars, not sharp edged, but rounded like neon bulbs appear when lit, both glowing a reddish pink, like a red neon light, at the same time, then fading, then both glowing, and fading, over and over. They were pulsating! I chose not to brighten or enhance the photos in any way, and it is VERY difficult to see what I even want to show, but here is the video.

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Neem Oil, Lesions, and Nosy Coworkers

February 05, 2012 By: kajay Category: F-Zymes, Morgellons, Supplements

Update: Like seabuckthorn berry oil, the neem oil ceased, after a while, to control my lesions.

The seabuckthorn mostly controlled them my lesions, but stained everything it touched an intense orange. That was a bit hard to explain to my coworkers and friends, in addition to the odd oily odor.

I have found that I am NOT allergic to neem oil as I thought. The neem oil not only does not break me out as I remembered, but it turns out it has a complex nutty FRAGRANCE that I find very appealing. It also is less staining, though, obviously, still oily.

My routine is this, and it is gradually resolving my lesions. That is, it seems to prevent the formation of new ones, and it makes the old ones get crusty and flake off. Morning, lunch, after work, and bedtime:

  1. Apply neem oil to skin WELL beyond the affected area, starting with the unaffected area and ending with the contaminated area, to reduce likelihood of spreading.
  2. Rub it in, which causes a lot of the sand in the sandpaper skin around the lesions to “rub up.”
  3. Once a lot of them are loosened up, wash the same area again a couple more times.
  4. Pat dry with clean paper towels, again working from uncontaminated to contaminated areas.
  5. Coat liberally with more neem oil.
  6. If no gloves were worn during previous application, wash palms and apply fresh neem oil to them.

For me, once the moisture has dried through the oil, I put on vinyl gloves. Especially when I am tired, this helps prevent me from carelessly contaminating my eyes or face.

The neem oil is of course not a silver bullet. I do not know of any immediate cures. But it is extremely helpful. Right now when I look at my arms, I see fading lesions, smaller than the ones that preceded them. Until I began using the neem, I was once again desperate as the seabuckthorn oil had ceased to prevent new lesions.

All this said, I am taking five seabuckthorn oil capsules morning and night. I am not sure yet what their role is in the healing process, but I am afraid to stop to find out if they are helping!

So that I can continue this routine away from home, I bought a dropper bottle of neem oil, which I refill and keep in my purse. At lunchtime and after work I go into our large ladies room and remove my suit jacket, then proceed with my routine. People walk in on me regularly and of course are curious. I act as though it is natural and make them ask me what I am doing or what I am using :-)

The answer I have devised is the most effective one I have stumbled upon:

I tell them that I am taking a supplement. This is a word that often produces a glazed expression, which is my cue to create a diversion or, for them, an out. I’ve found that an upbeat comment like “I am LOVING this crisp cold weather!” or “Do you know who did those adorable holiday decorations in the lounge?” works best.

Most nod with relief and go away. For those that do not, I lead the conversation to babies, weddings, or holiday decorations. For women, any of these topics usually clinches my victory, and my coworker goes away happy, having forgotten that I am up to my elbows in the sink in the ladies room.

Framed

February 04, 2012 By: kajay Category: Ammonia, F-Zymes, Indoors, Menthol crystals, Mixed Surfaces, Morgellons

If you have some type of infectious microorganism in your home, you probably already know you have to clean everything in your home that you want to keep.

Framed mirrors and pictures are no exception. I like to use lemon oil on wood, and of course ammonia is wonderful for cleaning the glass on framed pictures. Menthol crystals are another tool for protecting items that have a cavity or other place where you could sprinkle them.

Bypass Denial

January 30, 2012 By: kajay Category: F-Zymes, Morgellons

These things exist in accordance with the same behavioral mandate that drives all humans:

Above all – SURVIVE.

I am always, as are most people, reluctant to move away from “This can’t be happening” (denial). On the other hand, I fight the temptation to believe too easily. In addition, I try to avoid belief based on emotion, especially, in this case, the emotion of fear. I am a data seeker. I want, NEED, facts. But what facts do I have from which to hypothesize? to draw conclusions? I have plenty. They might mean something only to me, because they fall outside of what I think most people want to believe, outside what my doctor, pest control operator, and dermatologist know and, in some cases, want to believe or can find in their premier trade publications and encyclopedias.

These “things” have made me question my sanity, and also question the prescription in my reading glasses! They are so beautiful, so remarkable, that it is hard to hate them until they bite me again, often but not always without breaking my skin. Only when they break the skin and a dot of fresh blood appears on the surface do those with me believe, and then they only believe the bite, because only a sufferer knows the whole story.

Watching the critters through the lens of a microscope confirms to me their power as opponents. That they respond – often so quickly – to stimuli explains why they adapt to our many protocols, why we must keep changing what we do in order to maintain momentum in our battle against them.

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History – and Hope

January 24, 2012 By: kajay Category: F-Zymes, Morgellons, Psychological Effects, Skin

I’m a turkey hunter. One day in May, in the late 80’s, I carried the cooling carcass of a large gobbler from the woods while its parasitic populace happily hopped onto me. After that, I just thought my house had developed an awful flea problem, so I bombed it, and bombed it. I didn’t know it was all about me.

In the late 90’s, a temp moved into my workspace for a month of training. She hinted about a nightmarish condition that had ruined her life. When she left the department, she also left me with a new parasite. I thought I had brought the “fleas” to work. After I requested a second pesticide treatment in my office, a longtime coworker discreetly told me what I had not realized before: I was the only person being bitten. That was difficult to process but explained everything. An email buddy suggested scabies and, as horrifying as that was, I was grateful to have a start point for my research.

I bought a portable microscope, found some great online resources (see links), upgraded to a digital microscope, started

  • A defunct website called livingwithcritters.com.
  • This blog.

Like many others, I went through the emotional phases that follow trauma, and for some time considered suicide.

My area docs responded about like everyone else’s. It turns out that a little article called Delusory Parasitosis, by Nancy Hinkle, is published in three key professional trade encyclopedias: medical, entomological, and pest control – just in case you wondered why they acted like that and said all those mean things.

Through frantic trial and error, I found products and protocols that made life bearable for me while I continued to seek a solution.

I adapted enough to continue working, learned to prevent transmission, averted brain fog (so far), and ducked lesions until 2010.  The Morgellons, or whatever this is, began really accelerating my aging in the past couple of years and I knew that though I had won many battles, I was losing the war.

Before F-5

January 22, 2012 By: kajay Category: F-Zymes, Morgellons

I have had various parasitic pathogens since I was infested after a turkey hunt in the late 80’s. I did not know the problem was inside of my body. I thought my house had a really bad flea problem, so I bombed and bombed. For the next decade, the internal infestation grew to a profound level.

One of the most significant effects was that my body became a more attractive habitat for other pathogens, and in the late 90’s, a woman who briefly shared my workspace infested it – and me – with an additional pathogen. That one brought its own, and they made it known from the beginning that they were inside me, that they had invaded me to a highly intimate and terrifying degree.

I tried everything I read anywhere, I bought every lotion, cream, treatment, pesticide, that I could find.

Within three years, the direct and indirect costs had risen to six figures. I joined internet groups, published websites of my own, and made a few very good friends within the community. As a group, we experienced ostracism and rejection, and found no help in the medical, entomological, or pest control industries. Those who were lucky had the support of their families. My husband, who does not have it, and never caught it, is wonderful. Other than that, my online support group was all I had, since the rest of my family and most of the docs I visited did not believe me and could not help me.

That the medical community refused to recognize whatever it is I have meant no insurance coverage – not that that would have paid for all the laundering, the power used for all the extra drying, the dry cleaning for those who could afford it, help cleaning the house, all the chemicals for the house, all the products bought that did not work but that we could not return (75 percent of the costs in my case). It also meant that when I had a very bad day due to crawling (no sleep) or a fresh lesion (whose bleeding I could not stop completely) or nausea (when I was using MMS improperly) and a dozen other things that caused me to call in sick or go in late, I had to “clean up” my excuses. No one wanted the truth, it was too scary. When I did talk about it, even though I had figured out how to prevent transmission through prevention, the assumption was that I presented a danger to others, when in fact, because of my protocols, I did not. So secrecy and lack of validation was bad – and good.

And then one of my good friends called me and told me about F-5. I ordered it at once. From the day after the night when I first sprayed the liquid mixture on myself after my shower, I have not had a single big lesion. I have had 1/8″ spots that almost immediately turned brownish but they do not bleed. It was 95 today and I wore a cap sleeved shirt. My arms are clear. Only one stubborn spot hasn’t cleared up, but it will. That will be a big day.

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Safely Social, Part 1

January 11, 2012 By: kajay Category: Best Practices, F-Zymes, Indoors, Morgellons, Psychological Effects, Safely Social

How do I avoid transmitting this disease to others without giving up a social life? Obviously compromises are in order. Here are the ones I have made, and they seem to be working for me because I have been sick with this disease for a while with no known transmission to others:

Social Life

There is no reason to forego a social life. What I do is graciously accept invitations to people’s homes (but never invite them to mine no matter how many times I have to change the subject) and then simply do not go. That is easier than declining while everyone is looking at me. Right! Instead, I meet people in public places that I know are vacuumed or mopped daily or more often in some cases.

I did stop attending a bible study because everyone hugged, all the time. Had I at the outset indicated that I preferred not to be hugged, it would have been accepted, but I did not want to explain why I was suddenly saying that after hugging freely for a couple of years. Simply simpler. I miss that group, they were wonderful, and of course I miss the hugs, but I am not short of friends or social life, I just have to have it on slightly different terms.

I did also choose to stop attending a church with upholstered bench seats. Fortunately it was not a church I had attended long and I realize that choice would be much more difficult for many of you. Instead, I found a small church with folding metal chairs. I can dash in discreetly after the service and swipe the one I used with a disinfecting cloth and no one is the wiser. If someone comes in, I’m there to pray, right?

Check back tomorrow for more on protecting others through simple preventive measures.

Old Timers

January 10, 2012 By: kajay Category: F-Zymes, Morgellons, Psychological Effects

So why should you listen to the old-timers?
If they really wanted to get well they would BE well
after all this time, right?

Right. They got this and their first thought was,
“I’ve been waiting all my life for this demonic plague.
I think I’ll go swing in my hammock
while they EAT ME!!!”

Yeah.

If an old timer takes the time to share with you, chances are you need to listen. They may not be well, but they have obviously got the biggest barrel of what NOT to do of anyone. Plus, they are not just victims, they are SURVIVORS. Every soldier needs to know how to live through the battle, and that is where they can help you.

Warm and Fuzzy

January 09, 2012 By: kajay Category: F-Zymes, Indoors, Morgellons

Your unwanted pets love to wait for you in the fibers of your carpet, curtains, and upholstered furniture. Make sure you treat all of these thoroughly with a combination borate and insect growth regulator. Use an organic knockdown of your choosing to prevent biting while you treat your favorite recliner (you might want to get something comfy but easier to clean!), those wonderful sound-absorbing, insulating draperies in your bedroom, or you might just want to ditch it all and save yourself the maintenance.

Isolate, Isolate

January 06, 2012 By: kajay Category: Best Practices, Kajay's Best, Lice combing, Morgellons

Is it just me or do parasites naturally gravitate to the warmest, friendliest place in their world: MY HEAD. Early on I was still shampooing in the shower, and dodging nasty bites as I washed them out of my hair. My first trick was lathering up top-down, then rinsing top-down, turning around under the water till the lather was off, and then hopping out of the shower. I’ve learned a thing or two since then. What do I recommend that you might not find on the internet (or you might)?

ISOLATE!

I have saved myself from much worse contamination by using the kitchen sink for everything from the neck up, covering my hair, and THEN showering the rest of me. Once I am done with my hair, it remains covered until it is time to get ready for work the next morning. Failure to follow this simple rule has cost me many miserable hours. So, in extreme detail, here is my nightly routine:

FROM THE NECK UP (SINK)

Vinyl Gloves

Use gloves. I prefer vinyl. They hold up longer than latex.

Runoff is Baaaad

Never let water run from hair onto face. EVER. What to use is another discussion. How to comb, google it. Lice comb. Every day, twice on bad days. I use a very very fine-toothed metal comb. There are a couple sold on the internet that work fine. I pull the comb through once then scrub gently with a dish scrubbing brush, and repeat till no matter where I comb, or in what direction, the comb is clean. I soak comb and dish brush overnight in water with something unfriendly to critters. I think it is the overnight part that really does the trick. I soak them in the top of a 100-count computer disk spindle. Works just fine. I keep a couple in the shower to soak those implements, too.

Eye-Saving Technique

Here is a tip that may save your eyes, literally. When you are combing, make sure you do not run the water in the sink very fast. You want to avoid splashing it in your eyes. From the moment you pick up your scrub brush to clean your “harvest” out of your comb, your eyes should be closed, and you should be operating by touch.

Scrub slowly to avoid the spring action that occurs if you are brushing hard and the brush suddenly goes off the comb. Where and how you are standing, that would almost certainly fill your eyes with contaminated water.

Eye Emergency!!!

Should you get “hair water” in your eyes, immediately put on clean gloves. Drop everything else and do it at once. Gently splash body temp water (or cooler) on your eyes. Keep your face down so the water will run off and out of your eyes. Blot with a clean paper towel (I assume that is what you would use, too). Repeat a couple of times. Then put any kind of eye drops in your eye from the end that did NOT get splashed. Then bend your head over again, leave the drops in a moment, then blot. Lift your head only to add more drops. Do this about three times also. That SHOULD be enough. If you are not sure, or if you feel anything, continue to attack with the eye drops. Sometimes I will use a clean cotton swab and soak it with the eye drops or some kind of eye wash and clean my lashes and scrub my tear duct, which is where my critters seem to congregate. This whole emergency procedure will take you about 3 minutes but it is critical. When you are comfortable doing so, resume combing.

Nighttime Hair Treatment

When I finish combing, I dry my hair and coat it with something oily to retard activity. Coconut oil, a glossing oil, whatever you like. I look for oils that contain some kind of antiparasitic. There are lots of products in the beauty supply houses that have useful mixes. Many contain sulphur, for example, and some contain linalool or limonene. The addition of a wax such as beeswax or a microcrystalline wax is a plus. A bit of vaseline is useful if you don’t mind. There are lots of reasons to mind about using petroleum and other inherently unsafe products, but use of anything is always a personal choice based on considerations such as finances and level of desperation.

Hair Wrap

I like to cover my hair before I shower and go to bed. When my hair is dry but for the oils, I wrap it in paper towels, put a wig cap (2 for 99 cents at my local wig stores), and then put a shower cap on.

 

FROM THE NECK DOWN (SHOWER)

Shower Floor

Two 1-gallon jugs with pumps (recycled Flea Shampoo and pumps from Jefferspet.com), one with pure blue Dawn in it (aka my shower gel), and the other with a 1 part Dawn to 20 parts water mixture (in case I feel a bite from the shower floor). I keep a large funnel behind the back jug to refill these.

One plastic canister (floor of shower enclosure) with a dilute of Dawn or Arm and Hammer liquid laundry detergent. In here, I soak my foot brush (another dish scrubber – the long handles save my back), a callus scrubber, and my razor.

Shower Seat

Two plastic canisters (shower seat). One is for clean, unused implements. Used/dirty ones go in the other canister. When I step in the shower, I move them all to the canister with the clean implements.

Scrubbers

I have two big scrubbies, a rough cloth back scrubber, 3 small utility brushes I use for spot scrubbing, and a large sponge with a non-stick scrubbing surface on one side.

Towels

I buy shop towels. They are between the size of a wash cloth and a very small hand towel, but one is enough to get the bulk of the moisture off. I hang one over the top of the enclosure door.

Sleep Aid

I take a part of a sleeping pill (I like Seroquel, and I generally take half of the weakest, so about 50 mg). I make sure I am within 30 minutes of bed before I take it, because in 30 minutes, I will be horizontal – somewhere.

Cell Phone

Oh. Here’s where I use an antibacterial wipe to clean my sleek cell phone (sleek means less critters, so touchscreen, touchscreen, touchscreen). Every night. Then it is sitting there clean waiting when I get out of the shower.

Shower Shoes

I wear Reebok molded plastic slides (in lime green, a girl’s gotta have some fun) in the shower. They are similar to Croc’s but without the straps. I would wear them even if I didn’t have this – love ’em.

Scrub a Dub

Then I get in the shower and immediately scrub my feet with Dawn. This prevents fallout bites. I scrub away and put all used scrubbies in the contaminated canister.

Coconut Oil

I keep two plastic Lu Ann’s (Walmart, quart size) jars of coconut oil on the shower seat next to the canisters (yes, it’s crowded!) One has coconut oil, the other is for mixing. I also have one of those 8 ounce bottles with a pointed dispenser top like the ones that come with hair coloring.

After I rinse off the Dawn, I put Dawn in my hands and spray it around the shower, starting again with my feet for the same reason. Then I turn the water on its hottest setting and fill the mixing jar 3/4 full. I keep a stainless steel soup spoon in the jar with the coconut oil. I spoon some of that into the jar with the hot water and stir to melt the coconut oil.

I use a smaller funnel to fill the dispenser bottle, and drizzle the coconut oil on my skin, then blot some of the water off before I step out.

On the way to the bedroom, I grab my clean phone, and ditch the wet shower cap. Once in the bedroom I hook up my phone to the charger (or I’ll forget and it is my alarm clock), pull off any of the paper towel that got wet around the edges, and put a sterilized cotton kerchief on over the wig cap. I fold a corner one-third over and put the center of the fold at the nape of my neck. I tie in front once, pull the point through and wrap it around one of the tie ends, then make the second tie. Voila. Nice and neat.

I keep clean underwear, socks, and pajamas in sealed bins (sound familiar) off the floor. I also keep a container of clean socks by the bed.

I oil up some more, put specific chemicals (okay, some of it anti-wrinkle, sue me!) on my body as needed, antifungal on my feet, and dress. I change the disposable sheets on my bed and make sure all my open bins are closed. I get on the bed and immediately change my socks. This USUALLY eliminates any crawling in the foot area. My PJs, by the way, cover me completely. I add vinyl gloves in case I decide to rub my contaminated hand on my face or in my eyes during the night. I use an antifungal as a hand cream for this reason. That helps.

About then the Seroquel kicks in, turns off my skin and my brain, zzzzzzzzz

Selfishly Guarded

January 05, 2012 By: kajay Category: F-Zymes, Morgellons, Research

Some things should never be shared:

  • Clothes, unless dry cleaned or boiled
  • Towels and bedding, unless boiled
  • Wood furniture, unless sterilized, including joints, crevices, feet
  • Keyboards, probably never
  • Upholstered furniture
  • Pets, unless cleared by a vet

C’mon, post a comment. Tell us what you no longer share – at least not until this plague leaves your body…

River, Egypt

January 04, 2012 By: kajay Category: F-Zymes, Morgellons, Psychological Effects, Research

In case you don’t know this quote, it goes like this: “Denial ain’t just a river in Egypt.”

If you have this disease, in any of its many forms, “This can’t be happening” serves only the parasites. Anger is about as useless. The best place to turn that energy is in learning about the disease and finding out the various things that have worked for some of us. You are here, which shows that you are already searching. Don’t quit.

Do you have any clue what you have? If you don’t, go on ebay and search for a “pocket lighted microscope 60-100x.” You can always upgrade to a real microscope or a cheap digital one later. For now, you just want to know what’s “eating” you, right?

It is easy to say, this can’t be happening, but it is, so what do I do now? The answer is, research. No one has all the answers, but there are a lot of answers out there, especially on the internet. Some of them may help you. There are no guarantees. What works for someone else may not work for you. Think before you spend and then know you may find you have wasted your money. Unfortunately, this is more often the case than not.

Only you can decide what you can afford or have time to try, or what your body and family can take. Just remember, speed is of the essence. You must do whatever it takes to learn as much as you can, as fast as you can. Focus on those who have beaten it, but do not ignore the wisdom of those still battling.

Just Do It – Now, Please

January 03, 2012 By: kajay Category: F-Zymes, Morgellons, Psychological Effects, Research

When you catch yourself feeling sorry for yourself, like your life is over, reread this post.

FIRST THINGS FIRST

You have one life. You are sick. Lots of people are sicker. Your odds of getting well are far better, say, than those of someone who is about to be hit by a garbage truck. Find SOMETHING to be thankful for. (I know, it feels like your whole life was hit by a truck.)

Things to focus on: the faster you accept that this is your situation right now, the faster you can start fighting it effectively. Crying and yelling are only band-aids. They don’t really help.

YEAH YEAH

It is going to sound crazier than you feel right now, but look for things that are beautiful ANYway. Think of things you can be grateful for. Above all, LAUGH – laugh at the freaking absurdity of the situation. What the heck else can we do?

DO’S AND DON’TS

DON’T share your desperate plight with those who do not have this. It will not help. It will hurt. You will become, to them, any or all of these: crazy, dangerous, unemployable, unloveable, untouchable, and much more. DON’T SHARE. Not with them, anyway.

DO find the various communities of parasite sufferers online. That is the only smart and appropriate place to dump all your feelings out without real-life negative consequences. That said, you are not paying them. They do not work for you. They do not OWE you a reply to your post. They too are going broke, losing their jobs (because they talked to the wrong people), getting no sleep, clawing at their skin, railing against their unfair plight. Be patient when your posts go unanswered. Busy groups have so many posts daily that the new ones are quickly buried by the newer ones. So repost your questions until someone sees and answers them.

DO find and read the posts on this blog about preventing others from catching this from you. Some simple precautions can ensure that you can continue to function in society as a whole, keep your job, live in the same house with a non-sufferer. The precautions are not a guarantee, at least by me. Each situation is different. However, ve have vays of keeping others safe so we can live among them till we are again one of them.

GROUP ETIQUETTE

Never yell at your new support network, or use all caps (the same as yelling). Do not waste your time or theirs picking apart their posts. JUST LISTEN. Okay, I’m shouting. BE KIND. Even when others do not know to put their anger aside when they post–it is not about you! They just want their life back, too. Like you, they had other plans.

Keyboards

January 02, 2012 By: kajay Category: Best Practices, F-Zymes, Morgellons

It is important to keep your hands and face scrubbed and to wash them as often as possible. Use of a heavy hand cream or lotion often reduces activity.

Keyboards can be cleaned various ways. The most effective is to vacuum them with the dusting attachment of a vacuum cleaner. You can run your vac’s accessories in the dishwasher (I wouldn’t run them with the dishes :-)

You can also run a disinfectant wipe between the keys with a steak knife, or you can cut up a lint roller sheet and use the pieces to clean between the keys.

However, the best way to avoid contaminating and becoming contaminated from a keyboard is to wear disposable vinyl gloves. Why vinyl? Because latex gloves stretch, which makes typing difficult, and they fall apart quickly. Vinyl gloves are thus more economical (last longer) and sterile (broken gloves allow contaminant transfer).

Saving Memories

January 01, 2012 By: kajay Category: F-Zymes, Mixed Surfaces, Morgellons

This is a war. We didn’t ask for it, but we got it. It will take a minute to win it, and we can win it faster if we identify ways to reduce habitat and time-consuming maintenance for you. We can also save money, as those cleaning supplies add up quickly.

It is understandable if we are determined to keep our books and china and our collections of country quilts and on and on. But for the moment, we might want to store those books in boxes packed with menthol crystals, wash our china in an ammonia-based cleaner and pack them with bubbles and more menthol or diatomaceous earth or some other method of keeping critters out, get them as sterile as we can, rent a storage space if we can afford it, and get them out of the war zone. Many people throw these things away, but if we can set aside our anger and desperation in favor of methodically and thoroughly sterilizing these things prior to removing them from our home, we might be able to salvage them.

I hope.

And if when I unpack my things they contaminate us, then we will have to make the final, hard choice.

What Works4Me, Part 4

December 29, 2011 By: kajay Category: Baths, Best Practices, Eyes, F-Zymes, Hair, Lice combing, Morgellons, Ordering, Skin

Preparing for Sleep: Chin Up (Sink)

Scalp

  • I have been lice combing almost every night for many years. When I miss a few nights, I get really bad head and face crawlies and worst problems all over. I use a regular rubber handled flea comb. They are durable and work well enough for my not so microscopic morgies. I start by applying an F-zyme solution and some dimethicone based hair conditioner, then I comb till the comb comes clean and then wash my hair twice with Dawn.

Eyes

  • I use eyelid scrubbies then rinse my eyes with tepid water, blot, repeat 3x or more. I do my eyes before the rest of my face because the smell of the chemicals helps keep any organisms on my face from running right into my eyes.

Face and Neck

  • I use a Buf Puf and scrub really well.

Hair

  • I apply conditioner, beefed up with a little (not coincidentally antiparasitic) castor oil for more conditioning for little $.
  • I wrap my hair with paper towels, secure them with a wig cap, and cover with a plastic shower cap.
Tomorrow night I will share the remaining bedtime rituals that help me sleep…

 

What Works4Me, Part 3

December 28, 2011 By: kajay Category: Best Practices, Clothes, F-Zymes, Morgellons

Clothes Spray

This helps reduce bites from “sheds,” that is, from anything that “falls out” of my scalp. In a quart spray bottle, I add 6 oz of Jeffers Pet’s Foot and Hoof Rot spray, 1/4 to 1/2 teaspoon of herbal insect repellent (I like Legacy Herbs), and fill with water.

Skin Treatment

This significantly reduces crawling and biting. I apply this from the neck down twice daily: once when I am dressing for work and again when I am getting ready for bed.
In a plastic milk pitcher, I use a large wire whisk to mix–
  • 3 1-quart bottles of Luster’s Pink Oil (original not light)
  • 1 tsp of Legacy Herbs Insect Repellent
  • 1/4 Cup of Jeffers Pet’s Foot and Hoof Rot spray
I pour this mixture into a single-serving, melamine pasta bowl. I scoop it out with both hands and can apply all over very quickly this way.
I apply to privates first then everywhere else (on my feet I first apply an antimicrobial).
Check back tomorrow  night for the life-saving techniques I have developed and used for years with any number of products.

Lymorg.com is now shipping the latest F-zyme formula available.

 

What Works4Me, Part 1

December 26, 2011 By: kajay Category: Best Practices, F-Zymes, Herx, Morgellons, Psychological Effects

Note to Newbies

I had this a long time before I knew what it was, and for many years before I discovered this group. You are going to get well before me because you have not had it as long. Hold onto that. I know you are hurt and angry and don’t know why this is happening to you or why no one will listen.
I have seen many sufferers with less time in the disease than I have, come and go. YOU CAN, TOO! But you can also reduce the discomfort we have all experienced while you get rid of the disease.
Check back tomorrow night to read the first of my articles about how I have made this horrible battle a little less horrible.

 

The Lie of Delusory Parasitosis

December 24, 2011 By: kajay Category: Delusory Parasitosis, F-Zymes, Morgellons, Psychological Effects

Why is it so difficult to get a diagnosis of our condition? How we do not get a proper diagnosis I credit at least in small part to an article entitled Delusory Parasitosis written by Nancy Hinkle. Despite its (to us) obvious fallacies, the included table of symptoms (of DP) even today often blocks us from receiving help –  or even being taken seriously – by members of three key professions:
  • medical doctors
  • entomologists
  • pest control operators
Why has a two-page article so impacted – in a negative way – the lives of so many? Because the article appears in each of these professions’ trade encyclopedias and professional databases (I googled them). As a result, when these professionals get on their computers, log into their expensive trade software, and then punch in our symptoms, the search results tell them that it is all in our heads. A pat answer is what we get to a confusing, painful, terrifying condition, usually early in the disease when we are struggling just to figure out what is going on, how to get rid of it, and, worse yet, are realizing it isn’t as simple as a bottle of Rid or a tube of Eurax.
Like the strong among you, and this disease has definitely made me strong, I don’t know about you, I refused to let these obstacles keep me from doing absolutely everything I could to get over the disease and put it behind me. I had to stop the incessant ice pick bites, the crawling invasion of every part of my body. I got lucky. Even though I am still fighting the disease, I have learned to deal with the short-term effects while the battle rages on.
Over the first couple of years I pretty much stumbled onto these things that have allowed me a more humane existence in spite of the critters.
Newbies, check back tomorrow night for my first in a series of things that can help you survive the fight you have in front of you!

 

Albino Exodus

December 24, 2011 By: kajay Category: F-Zymes, Herx, Morgellons

In addition to “slamming zymes” I decided to try what a friend is doing with great success, that is, when he uses this product in the bathtub, a large number of black particles came out of his body. You have probably heard of people using algaecides. He has found one that has less side effects – it is gentle – and that is inexpensive. But most of all, it works! I used it differently, in my post-shower drizzle (air dried). I mixed it with my usual F-zyme + borax + epsom salt combo.

The big difference in what happened with me is that instead of black particles, I get large (1/8 to 1/4″ long) completely white fiber critters! They are constantly rolling out of my body and onto my  skin once I use the algaecide.

As with the F-zymes, I take a supplement to reduce biting. The best (for me) is oregano, with neem leaf and olive leaf tying for second. I take three of whichever of these I have on hand. When I don’t, I get bitten.

Note: Lymorg.com seems to be offering F-6, but Gordon will actually ship you the latest F-zyme formula he has on hand at the time he receives your order.