josej
Full Member
Posts: 140
|
Post by josej on May 29, 2008 21:47:43 GMT -5
To answer Chicago Bonnie's question about whether an Rx is required: No, no prescription necessary. The veterinary version of ivermenctin is product called IVOMEC. This comes in a 50mL bottle, which is supposed to be injected into farm animals. However, I have it on really solid source from an RN that this product is actually more "pure" than the one for human consumption. You don't inject this into yourself (you drink it) but you will need a hypodermic needle to extract it out of the bottle. The dosage is 3mL (3cc) of IVOMEC diluted in a small shot-glass of juice. I'm not sure how often you're supposed to do this. Please get some advice on that. We buy it at a local horse feed & supply store. I just walk in and ask for it, like I know what I'm doing... never had as much as a raised eyebrow. Cost is around $50. Another really amazing product (also at the horse store) is EQUIMAX. This is a paste that contains both ivermectin and praziquantel. They're both strong antihelminthics - antiparasites. We use it by applying it directly on to sores and lesions. Boy, does it work! Makes the critters come out, dead, and stops the itching. This costs around $17 retail, but I found an on-line store that sells it for $9.99. Again, no prescription is required. The usual medical disclaimer goes here. I'm not a medical doctor, so use your own discretion... and don't sue me if you start whinnying around and talking like " Mister Ed".
|
|
josej
Full Member
Posts: 140
|
Post by josej on May 28, 2008 20:53:49 GMT -5
I don't know what this is. No clue. But it came out of my scalp. The same exact thing's come out of KJ's body about three times. We're calling it " lobster skin" just to give it a name. Has anyone seen anything like this? It's ridicuolously small, only about 1mm. Those are the true colors. Bright orange/brown. Hard like plastic. What is this? Thanks for helping!
|
|
josej
Full Member
Posts: 140
|
Post by josej on May 23, 2008 22:58:16 GMT -5
Oh brother... sometimes I can't see the forest for the trees! Here I am asking about MMS (as if it's some secret potion) and then after reading everyone's comments I see that at the top of the page there's an Ad for the product! Oy. Cyn, I wish I'd come back to the board earlier... before I ordered a kit... oh well, my loss. But thanks for your kind offer. Maybe if the stuff doesn't kill me I'll take you up on the remaining bottle. Friskers, thanks for your input. Yea reading the literature is kinda scary. I like the part where it says, " you know when it's working when it makes you nauseous". Just what I need.
|
|
josej
Full Member
Posts: 140
|
Post by josej on May 23, 2008 17:00:36 GMT -5
We're thinking about taking MMS (Miracle Mineral Supplement) to get rid of parasites.
Has anyone here used it? Good? Bad? Any recommendations?
Thanks for your advice.
|
|
josej
Full Member
Posts: 140
|
Post by josej on May 22, 2008 19:48:52 GMT -5
Godog,
That's also the theory behind autosanguis therapy.
A little of your own blood is put back into you. Your body goes, "Huh.. what is that?" and goes into a full-out attack. That supposedly strengthens your immune system.
It's repeated two weeks later. Again your immune systems grows stronger.
Eventually after many such therapies, your body is so strong that it repels whatever infection you have and guards against any new ones.
.... that's the theory anyway.. but it sorta makes sense.
(did you know your name is a palindrome?)
|
|
|
josej
Full Member
Posts: 140
|
Post by josej on May 11, 2008 16:35:54 GMT -5
This specimen came out of a lesion from KJ's arm. We photographed it at 10x, 40x and 400x. I sent copies of the pix to a lot of people... and nobody could identify it. So, we simply named it " big hairy bug" and filed it away as just another mystery bug. That was a year ago. Yesterday, in a flurry of emails I learn that Sidney and Toni have identified it as a possible " Kinorhynch". Here's a side-by-side comparison of the two. Below an enlarged photo of the original specimen. And finally, here's an article from Profs. Sidney & Toni that explains all about this life-form. INTRODUCTION TO CEPHALORHYNCHAPriapulids, Kinorhynchs, and Loriciferans The Cephalorhyncha are a group of ecdysozoan animals that traditionally have been classified together with a variety of unusual and lesser known organisms in a larger group variously known as the Aschelminthes, Nemathelminthes, and/or Pseudocoelomata. This larger group is now known to be polyphyletic, and contained several taxa that were not closely related. However, one part of that group -- the priapulids, kinorhynchs, and loriciferans -- appears to form a group in its own right. Now these organisms are grouped with the nematodes and arthropods based on a set of shared characters including the presence of a cuticle and the fact that they periodically shed their cuticle in a process called ecdysis. Some zoologists have suggested an even closer relationship with the nematodes, and call the combination of nematodes and cephalorhynchs the Cycloneuralia.
All cephalorhynchs have a spiny proboscis which can be collapsed inside the head or everted (turned inside out) to gather food using the spines. This is rather like turning a sock inside out, only with the surface of the sock covered with numerous tiny hooks. It is this spiny evertible proboscis that gives the group its name Cephalorhyncha, meaning "beak"-head.
Though cephalorhynchs may abound in marine sands, muds, or gravel, none of the members of the Cephalorhyncha are particularly diverse today, and most are tiny (less than 1 mm long) so they are unlikely to be seen or encountered.
Additionally, neither the Kinorhycha nor Loricifera have any fossil record. So you might be asking yourself, "Why is there a whole page about this group on a site devoted to paleontology?" The answer lies in the fossil record of the third group, the Priapulida. Though there are only about 16 species of priapulid worm today, quite a number of fossils of the carnivorous priapulid Ottoia have been found in the Burgess Shale. In fact, priapulids and arthropods are the most common complex animal fossils from this Cambrian locality, and make their appearance in the fossil record as early as most of the first-known members of various major animal groups.
Modern priapulids burrow in marine sediments and many be several centimeters long, though most are microscopic. Larger priapulids primarily inhabit cold waters at hish latitudes, where they hunt for polychaete worms. There are 16 species known to be alive at present.
The Kinorhyncha are microscopic, spiny-headed worms. You can see a greatly enlarged diagram of one at right on this page. Kinorhynchs feed on bacteria and tiny particles associated with sand grains. They are the most diverse group of cephalorhynchs today, with about 150 species. Loricifera is a recently discovered group of animals. Discovered in 1983, these tiny worms have a spiny head, and so resemble the kinorhynchs to which they are related. Only about 10 species have so far been described. www.ucmp.berkeley.edu/phyla/ecdysozoa/cephalorhyncha.html
|
|
josej
Full Member
Posts: 140
|
Post by josej on May 9, 2008 18:02:02 GMT -5
Disturbing as it is, that frame of mind no longer surprises me. It reminds me of what philosopher Francis A Schaeffer' wrote. In his book Whatever Happened to the Human Race?, he speaks on how society devalues and cheapens human life. Here's an excerpt from Chapter 1: "If man is not made in the image of God, nothing then stands in the way of inhumanity. There is no good reason why mankind should be perceived as special. Human life is cheapened. We can see this in many of the major issues being debated in our society today: abortion, infanticide, euthanasia, the increase of child abuse and violence of all kinds, pornography (and its particular kinds of violence as evidenced in sadomasochism), the routine torture of political prisoners in many parts of the world, the crime explosion, and the random violence which surrounds us." Francis A Schaeffer 1912~1984
|
|
josej
Full Member
Posts: 140
|
Post by josej on May 8, 2008 11:53:43 GMT -5
.....hmmmmm? Now I'm confused.
Is it Morgellons -or- Morjellons?
I say potato, you say potahto. Just how do you pronounce this disease?
|
|
josej
Full Member
Posts: 140
|
Post by josej on May 8, 2008 11:44:32 GMT -5
Happy 60th Birthday to ISRAEL. Check out this 60-sec movie. www.aish.com/movies/60Years.aspAbout half-way into the video, when the medical pictures come up, there's a very interesting image........ What is that? Meine Yiddisher Morgellot?
|
|
josej
Full Member
Posts: 140
|
Post by josej on May 7, 2008 17:54:05 GMT -5
Hi ((BB))
And now a word from one of those "husband" types.
I may be wrong, but I think I might know what's going thru' Mr BB's brain. Again, if I'm wrong... I sincerely apologize to the guy. But it goes like this:
He probably doesn't really believe that Morgellons is anything other than some weird disease. He certainly doesn't make as big a deal out of it as you do. Most psychiatrists think it's just a complex mental delusion. Regular MD's don't think it's anything more than a stubburn dermatitis. And the vet's probably thinking along the same ignorant lines.
Mr BB doesn't want to come off like a kook. Therefore he'll avoid asking for a skin-scraping because that would make him too much like you. A little bit "suspect" in the doctor's eyes. It's a pride-thing. And I feel for the big fella' because if he really believed that it was true, I'm sure he'd go to the ends of the earth for you and your pooch.
But he doesn't know it's true. He's on the fence. He's not sure what to think. And as a male, it's safer for him to err on the conventional-wisdom side.... rather than to put himself out there and possibly get mocked. It's ok for you to be ridiculed. But for a guy to stick his neck out like that? Ummmm.. not likely.
((BB)) I'm sorry for what it's doing to you. As a wife, you're disgusted and angry with the big lug because you see it as a lack of trust on his part... a lack of faith in you... a lack of balls (maybe).
But on the other hand, from your bigfoot's point of view, he doesn't want this reality. He just wants all this to go away! He just wants his ol' wife back the way she was.... all sweet and cuddly and taking care of him. Yep, it's pretty infantile, but that's who we are... big overgrown children.
It takes a while. But eventually (I'm really hoping) your husband will come around when his eyes are opened. Then he'll be a different person; the one you need now. I know this sucks. And I'm sorry for all the messed up emotions that you're feeling. But, please just be kind of the big goof. Don't freeze him out. No extended middle fingers. Remember, he's just ignorant [meaning: without knowledge]. Show him. Show him evidence. Ask him to read an article on Morgellons. Don't overwhelm him... do it gently... as if dealing with a slightly retarded person. After all, that's what we men are like the majority of the time.
Feel free to print this out and let him read it.
If some of my opinions seem deeply insightful, well... it's because that was me at the beginning of my wife's disease. Ack! I'd kick my own rear end if only I could reach my butt. Blessings on you.
|
|
josej
Full Member
Posts: 140
|
Post by josej on May 6, 2008 22:28:21 GMT -5
Hello all, Been keeping a low profile here at LB's... but have logged in plenty and kept up with everyone's posts. So, let me just say a big happy Florida shout-out to my friends, and a warm hello to all the new faces. You might be interested in knowing that in our area there are about 45-50 people who have Morgellons. These are young, old, singles, marrieds, widowers, soccer-moms, and even a couple of healthcare providers. What do they all have in common? Everyone's sick, nobody's cured, nobody's happy about it. For some reason (I guess due to all the publicity from the FOX station) we seem to be at the center of all these people. We're in daily communication with each other. Their emails and desperate phone calls just prove to me that the need is simply huge. We've reached out. We've helped. To some we've given a little cash. Others, we've helped with meds. And we've done a lot to meet their overwhelming need for fellowship, friendship, and to have a sense of community. So, KathyJ started thinking outside of the box. And now we're kinda thinking about organizing our efforts. We've already been doing the work. But now we're thinking about (praying about) forming a not-for-profit group. It might be called "the Florida Morgellons Foundation". Wouldn't it be great to have a place where everyone could meet? Where everyone could share their experiences? And wouldn't it be awesome to give a grant to a young researcher who would join the fight? All we have now are dreams (and this little blog) mybugblog.squarespace.com But we hope to expand and morph it into a site that helps reach our local Morg community. God bless.
|
|
josej
Full Member
Posts: 140
|
Post by josej on Feb 19, 2007 1:53:51 GMT -5
Hello all... Well my wife KATHY took a courageous step forward and made her disease a public matter right here in Miami FL. Our local Fox station WSVN Channel 7 did a story on her health problem. It aired as the top story on Feb 13th and again during the 6 o'clock news the following day. Ever since we've received tons of phone calls and emails from people who have the same thing... but thought they were alone. Folks, something is happening. There's a ground swell of regular people like us who are rising up and demanding to be heard. I'd ask you to click on the link and view the video clip. Let's make some more noise. My wife and I just joined the battle. My best to you all. Jose wn.wsvn.com/Global/Video/WorldnowASX.asp?os=&vt=v&clipid=1235927
|
|
|
josej
Full Member
Posts: 140
|
Post by josej on Mar 14, 2008 23:37:32 GMT -5
A few days ago we met a young couple from Hillsborough Beach, Sam and Sophie (not their real names). Sam has a really virulent case of Morgellons; Sophie's is less noticeable. These two've had one bad thing after another.. and they found themselves at the very bottom of the pit.
Both sick, without money, out of work due to health reasons, no family support, and living in a bug-infested dilapidated hotel from which they were being evicted. They were down to their last 25 dollars and no food in the fridge except twinkies and cokes. Out of desperation, Sophie called Patrick Fraser for help. Patrick emailed me asking if we'd call and try to help them. I called and was moved by the horrible condition of their lives. So, I made ourselves available to them.
That same evening they drove 75 miles down to our home in Kendall. "Drove" in a beat-up junk of a car, with only one tail light working, door handles missing, and no windows (yea, Sam had previously smashed them out with his fists during a tormenting fit of being stung & bitten by critters). Worst, he was driving with a suspended license and expired plates !
I answered the knock on the door and invited them in. Sophie was pretty, neither thin nor heavy, only a little disheveled.. kinda like a flower child from the sixties. Sam had long hair that hung past his shoulders, a scruffy beard, and tattoos stretching up half his right arm. His skin was covered with sores. Some open; some scabbed over with a dark brown crust. He couldn't stop itching. He scratched the sores and twitched his head with a tic. He started talking and couldn't stop the rush of words that came out as he nervously described what their life has been like. She joined in and told of the hellish life they've had over the past four months.
They told us how they thought they got Morgellons. And for the next five hours we all talked, compared experiences, and shared what information we could about this disease. (Isn't it strange how we now bond with complete strangers, but it's as if we'd known them all our lives? All because of this horrible thing we call Morgellons.)
We first fed them some Jewish penicillin (chicken noodle soup). Then got down to the various forms of treatment that help us survive this plague. We talked about antibiotics, antifungals, antihelminthics, as well as other therapies like applying bismuth subgallate to the skin, bathing with sea salts, and disinfecting the carpeting with apple cider vinegar. Truly, we could have gone on and on for hours.
After a long and exhausting evening it was time for them to go. Sam had quieted down and was remarkably peaceful. I think he had just needed to talk to someone (other than a dermatologist) about this disease. Sophie and Kathy had also done quite a bit of talking and were actually devising a way to start a non-profit organization to educate people on Morgellons. So, it was a very positive evening after all. We walked them out to the door, we forced them to take some cash from us, and said our good-nights.
They phoned us later that night, just to let us know they'd made it safely back to their home. They thanked us and said we had saved their lives and had given them hope where there was none. They sounded giddy, and happy, and joyful.
Then, the following day, everything drastically changed.
There was a notice taped to their door advising that between 10:00 am to noon a pest control man would be spraying insecticide in their apartment. They were somewhat pleased thinking that maybe some of the bugs would be exterminated. So, when the doorbell rang at 11:00 that morning, Sophie went and opened the door. Shock waves of fear shot through her body as she saw that there were three uniformed officers from the sheriff's department. They stormed inside and put handcuffs on Sam, who had just woken up and was still wearing his pajamas.
Sophie could only watch in disbelief, as they hauled Sam out, down the elevator, and off in their squad car. She was screaming at them that Sam was sick and wouldn't make it if he was thrown behind bars. The only thing she was able to do was to give the officer in charge two prescriptions (which hadn't been filled) that Sam needed.
She phoned me in tears and relayed that there was a bench warrant out for Sam's arrest because he had missed a court appearance. (Missed it because at that time they were at a hospital unsuccesfully trying to get treatment for Morgellons.)
So now Sam's behind bars. No one at the jail has ever heard of Morgellons... not that they would really care if the had... and Sam is totally vulnerable. As I write this, it's past midnight here in Florida. I just called Sophie to check up on her. She's numb and scared that Sam is going to die in the county jail.
I don't know how this story is going to end. I only know that we are sharing Sam and Sophie's terror. How horrible it must be to have Morgellons and to be locked up behind bars.
|
|
josej
Full Member
Posts: 140
|
Post by josej on Mar 14, 2008 23:42:13 GMT -5
ChicagoBonnie, I guess we were the "1" out of the three's who were awarded social security disability benefits the first time around. If you want, PM me and I can send you copies of the "packet" we used.
|
|
josej
Full Member
Posts: 140
|
Post by josej on Feb 22, 2008 0:10:04 GMT -5
We just had a nice friendly discussion of what's a fiber and what's a bug. Some believe bugs are bugs (insects). Some classify bugs as other parasitic organisms (bacterium, fungi). And others believe bugs are probably not-bugs, but rather fibers that can be misinterpreted as bugs. Here are some pictures of KJ's bugs (or are these fibers pretending to be bugs?) Unfortunately, all of these came out of her body.... from skin lesions... or from stool samples... over the past two weeks. Anything look familiar? The real question is how to eradicate these from her body? She's had this for over 2 1/2 years now. It's getting pretty wearisome.
|
|
josej
Full Member
Posts: 140
|
Post by josej on Feb 21, 2008 21:46:46 GMT -5
Thanks to all who participated, shared info, and played around with it. Here are the results after just 48 hrs. If more people respond, I'll post new updated results. [/u] (4) Prevenge Frisky Bannanny JWF Mostly Fibers - Some Bugs (4) Kmarie Laylo Browncircles Ivanhole Fibers & Bugs - 50/50 (3) Toni Ladybug Betsy Mostly Bugs - Some Fibers (5) Curlypainter Art Robertalouise26 Taratula38 KathyJ Bugs Only - No Fibers (none)[/ul] [/b] [li]We still don't seem to exactly know "what" is a fiber. [/li][li]What about a fiber that looks and acts like a "bug"? [/li][li]What is a bug anyway? Is it... Arthropod..Helminth..Plant..Bacterium..Fungi..Other? [/li][li] Morgellons seems to include a broad spectrum of fibers and bugs.[/li][/ul]
|
|
josej
Full Member
Posts: 140
|
Post by josej on Feb 20, 2008 0:18:29 GMT -5
Hello everyone. I have a question for everyone on the board. Please help me with a short answer.... or long. In your own personal experience with Morgellons, which would you say you have? Please feel free to add any comments if you want to clarify anything. Thanks all ! (I know this is kind of a survey, but I hope the mods let me keep it here for a few days)
|
|
josej
Full Member
Posts: 140
|
Post by josej on Nov 14, 2007 15:11:18 GMT -5
|
|