josej
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Post by josej on Jul 7, 2007 23:32:26 GMT -5
First, I want to send a big THANK YOU to all of you who've been praying for my wife KJ. And, also wanted to to share one answered prayer and a happy story. We don't get too many of those lately, so I'm taking this as a huge miracle.
Last week KJ got up out of bed with hundreds of "floaters" in her right eye. She'd had floaters before, but not this bad. Lots of pain in the eye-socket; pounding headache in the temple. It was doubly scary for her because the shapes of the floaters were identical to the parasites she's been seeing under the microscope. She waited a couple of days and it got worse. Now she was seeing red and brown smudges in her field of vision. I called our eye doctor.
He was already booked solid (it was the day before the 4th of July and he was trying to get out of the office early)... but instead he said he'd keep the office open and we could come at 5:30.
He did a very long eye exam. Usually this doc is all jokes and smiles, but now he was glum and had a serious look. We figured bad news was coming. After the exam he told us he could barely see all the way thru' her eye due to all the floaters, debris, and blood inside her eye. He said it looked like the retina was detaching. Also said that as the retina detached, it had severed a small capillary which bled inside the eye. Our hearts sank.
It was exactly one year ago to the day that I buried my mother, who died as a result of an eye procedure that went bad. She had hemorraged and never recovered. All these things were swirling around my head. I knew KJ was thinking that's what was going to happen to her.
Well the doc called a retina specialist and had a phone consult with him. After 10 minutes he came back and said, "Ok, he's going to meet you right away at his office which is down by Sunset Drive". By now it was around 8:00 PM, on July 3rd, and the weather was horrid. There was lighting and thunder and a severe rain storm. But, the retinologist drove down from his home in North Miami - with wife and dog - and opened up the office for us. (That already was a miracle... how many doctors do that?) He came in wearing blue jeans, a wild green t-shirt, and a big smile. We loved him right away.
After another long eye exam he confirmed that the retina was detached and told us it needed to be fixed before more damage was done to the eye. He said, "Ok, follow me to the laser room". (The laser room? Was I hearing things? Was this guy going to do a procedure on her right then and there?) Sure enough. He led us down the hall to another room and hooked KJ up to the laser. After just a few moments of the laser shooting into her eye he pronounced, "it's all fixed".
Whoa, this was happening too fast. I'd imagined waiting a couple weeks for an appointment with the retina-doc and then another couple of weeks to schedule the laser. But, it all happened boom-boom-boom and before we knew it, her retina was all put back in place and the detachment was all fixed.
He let us out the back door. We said goobye to the doc - and wife and dog - and started jumping up and down for joy right there in the wet parking lot. Then we both held hands and thanked our great God and Father in heaven for this miracle.
Oh yea, one last thing... the doc never asked us to fill out any paperwork, didn't ask for our insurance card, didn't ask for payment.... nothing. He just took KJ in and took care of her. I guess that was another miracle too.
Well, the floaters are still there. He said it'll take some weeks for them to get re-absorbed into the eye. And if not, there's another procedure he can do to sorta vacuum them out. But, for now we're just taking it one day at a time.
So, again thank you all for your kind thoughts, words of encouragement, and for your prayers. I hope you continue to lift us up as we're totally isolated without you.
Hugs all around !
ps This disease does affect the eyes. If you're having problems, don't put off visiting your eye doctor. We told our doc all about the bugs, parasites, Morgellons.. etc. He wasn't at all put off and treated her with utmost respect.
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josej
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Post by josej on Jul 11, 2007 14:11:07 GMT -5
I've got two thoughts here:
1. Not to disagree with Kmarie & Liz... but we had a completely different experience with our TV interviews (2 already and 1 more on the way) with our local FOX station. Maybe it has to do with the reporter and whether he/she really wants to get to the truth. Our reporter, Patrick Fraser, was 100% on our side. After hearing our story he was so peeved at the medical community, the health dept, the CDC, etc., that he wanted to present pretty much our side only. Of course, that can work the other way, hence you guys are a little skeptical. Can't blame you. But, just from our personal experience, we would do it over and over again. I also understand about the editing. They shot approx 2 1/2 hours of video, which was then edited down to about 5 minutes of actual on-air time. So, if you're going to be interviewed it's best not to just start talking off the top of your head. It's best to rehearse it just a little so you have some good "sound bites" which will most certainly be put on air. Reporters love that. So, my advice would be to feel the reporter out first, before actually doing the interview, to see if you can get a sense of where he's going with the story. It may surprise you and be a really good thing.
2. My second thought is: Where is everyone? Is Sidney the only person in the Oklahoma that has Morgellons? Even she will have to drive about 1 hour to get to the TV station. Surely there are others out there. Please contact those people and have them respond to toni's post. She'll thank you for your involvement.
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josej
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Post by josej on Jul 4, 2007 23:19:11 GMT -5
OK, in response to ToniSue's post, and if you want to scare the regular folks out of their pants, how's this paragraph?
A virulent epidemic of the pernicious Morgellons disease has already contaminated over ten thousand persons in the United States with a devastatingly debilitating illness and this contagiously morbid end-stage infestation is rapidly attacking and spreading like a plague of Biblical proportions.
.... or words to that effect.
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josej
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Post by josej on Jun 27, 2007 0:03:16 GMT -5
Please read the short excerpt which I copied from one of our local hyperbaric centers offering HBOT for various conditions including Lyme. They claim that HBOT, as an adjunct treatment, would be beneficial to Lyme patients. Three separate people have brought this therapy to our attention. I'd like to get your thumbs up -or- thumbs down on it for Kathy's condition, which is mainly a widespread parasitic infestation. Obviously, I'd really like to hear your reasonings either way. Thank you so much for your valuable time. We're quickly running out of options here and can use your help. Thanks again. JoseJ & KJ - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - Lyme DiseaseLyme Disease is an infectious disease following by a tick infestation with the Borrelia burgdorferi (Bb organism). The disease may remain quiescent for years. When frequently diagnosed, the early signs and symptoms are arthralgia, weakness, fatigue, flu-like symptoms, muscle aches, joint pain, rash (referring to as erythema migrans) and occasional CNS symptoms. Its primary treatment are tremendous dose of intravenous and oral antibiotics in an attempt to eradicate the parasite. The effectiveness of any treatment is characterized by a Jarisch-Herxheimer reaction, which occurs when the Bb organisms are somewhat destroyed. The toxic products cause a reaction of fever, chills, and weakness in the patient. The diagnosis remains obscure for a number of years, but recent tests such as the polymerase chain reaction (PCR), the ELISA, or the Western-blot test help to make the diagnosis. A complicated case of lyme disease is an encephalopathy, or an inflammation of the blood vessels of the brain. This is very well demonstrated with SPECT imaging. We have treated a number of patients with lyme disease who continued intravenous antibiotics, but took hyperbaric oxygenation to help reduce the Bb organism infestation. A herxheimer reaction has been produced and many patients have done well. The original work by Dr. Fife indicated the usefulness of hyperbaric oxygenation in this condition. It must be pointed out that this organism is not an anaerobe but is unable to grow as rapidly in a high oxygen environment. www.oceanhbo.com/client/ohc/list.htm
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josej
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Post by josej on Jun 25, 2007 23:18:43 GMT -5
Liz, Bugsy, Junebook:
I just printed out your posts, gave it to my wife (KJ) who's now asking me to reply back.
LINT BALLS. You've got them on your furniture? We've also got them in all of our clothing. Especially on certain types of shorts, jeans, socks, and of course on the towels. For a long time I've suspected that bugs live in those lint-ball-nubby-things so I've been methodically removing all of them from our clothing. Takes a long time sometimes. And, this is ultra important. Check your pant pockets (you can turn them inside out) and remove all the lint that collects in there. That's another sure home for these bugs.
Then I wash all the clothes separately. Not by color like in the old days.... but by type: all the socks together, all the underwear separately, all the t-shirts separately... etc... or else they will cross-contaminate each other. I know it sounds nutz and me & my husband have had plenty of heated discussions over this... but it's true.
For the drier, I've been using a spray bottle with borax & water. This solution goes into the drier vent, into the inside of the drier, and even on the clothing before throwing them into the drier.
Junebook, can you give me the ingredients to your ammonia solution? That sounds like something we could really use on our furniture and kill the eggs. Thanks all. KJ
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josej
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64 DAYS
Jun 25, 2007 11:24:48 GMT -5
Post by josej on Jun 25, 2007 11:24:48 GMT -5
To bks37,
First, I want you to know that I've had the same experience your sister did. I've taken my wife to several doctors who, after a few moments stop talking to her and instead turn their attention to me. Then they'll say things to me like I shouldn't be "supporting my wife's delusions" etc. They'll say that right in front of her, as if she isn't even there! Of course, it makes her feel like she's totally insignificant.. or like she's a two-year-old. So, I understand your frustrations.
I also agree with others on this board who would like to hear a bit more info from you. I know it's hard, especially if you've been confiding mostly with your sister about all of this. But there are some here who could really benefit from whatever information you have. Especially your interactions with the Texas representative... and his comments about the "phenomenon" he witnessed. That part really made my ears perk right up.
Would you kindly share just a bit more with us? I for one would be very, very appreciative. Thanks and my best wishes and prayers to you with your health problems.
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josej
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Post by josej on Jun 20, 2007 18:39:36 GMT -5
Whoa niels.... Obviously you've had some rotten experiences with people who go by the title of " born againers"... but, don't throw out the baby with the bathwater ok?
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josej
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Post by josej on Jun 16, 2007 17:30:59 GMT -5
One more thing, please compare the photos on the left with the ones on the right. The left photos are of a small fly which KJ smashed. We put it on a slide to look at it and from it's tail came out this string of.... what? fly-poop? fly-guts? fly-eggs? The right set of photos are of a small piece of dark mucuosy stool that came of KJ. We also put that under the microscope and... well, doesn't it look very similar to the fly stuff? Scared.. Need answers!
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josej
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Post by josej on Jun 16, 2007 16:41:09 GMT -5
Is this stuff (egg chains) worth saving? Right now they're just sitting on top of a glass slide. If I want to keep them for future reference, what do I store them in? Vodka in a glass vial? How do you keep your samples?
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josej
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Post by josej on Jun 16, 2007 11:55:51 GMT -5
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Post by josej on Jun 16, 2007 9:09:11 GMT -5
I've been asked to reply to Carrie's questions. (Was there a question in her post? Well maybe... but I'm still kinda newbie around here and haven't lernt to decipher lymebustereaze yet. I'll try tho'). 1. How did you get them like that? What do you mean, how did we get them like that? Geez, they just came out, that's all. We sure didn't order them from medichest.com. Honest, missus KJ just "wiped" (golly here we go again with the graphic stuff) and looked in the t.p. and there it was. There were several clumps of these eggy-things. Here's another pix below. Not as defined as the first one, but it'll give you more of an idea. You know, after a couple of years of this disease, you don't think it's abnormal (sorry Abbie) to look into your poo... So you think it's a chain of intestinal fluke eggs? OK I'm going to need some reference material. Not doubting you, just would like more factual info. 2. Have we done antihelminthics? If ivermectin, mebendazole, praziquantel, and thiabendazole count, then yes. All of the above. We've even gone to our local horse & cattle feed store and bought stuff used for animals (like Ivomex and Equimax) which KJ uses to make a topical paste. And what do you mean, the adult flukes will come next? NOOOO. I don't want to see that. Reasonable, what kind of plant makes chains like that? Or are you just pulling on mine?
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josej
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Post by josej on Jun 16, 2007 0:59:45 GMT -5
[shadow=red,left,300][glow=yellow,2,300] W A R N I N G[/glow][glow=red,2,300] W A R N I N G[/glow][glow=blue,2,300] W A R N I N G[/glow][/shadow] If you're easily offended by graphic photos, avert your eyes NOW....oh wait, I forgot this is lymebusters... ain't nothing sacred around here. OK, this sample came out in KJ's ahhmmmm... stool. It's a tangled mess of little tiny segments. They're brownish/amber in color, and a little transluscent as if filled with some gel. There are about 100 of those segments. The entire thing measures 2mm across. She produces these things all the time! What the heck is it? Your comments are appreciated. Thanks.
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josej
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Post by josej on Jun 16, 2007 0:21:19 GMT -5
We were pleasantly surprised to get this article in the mail from our psychiatrist. He's been very noncomittal about our disease... real or delusional. I guess being a 'shrink' he's gotta be very diplomatic with his delivery. Anyway, it was nice getting a positive article from him. (BTW if this was posted before, my apologies.) Morgellons DiseaseRobert C. Bransfield, M.D. Red Bank, N.J. I am pleased to see that in the December 15, 2006, issue, Psychiatric News drew attention to Morgellons disease and that the excellent article gave sound advice on communicating with delusional parasitosis patients. However, I would like to add comments about the distinction between Morgellons disease and delusional parasitosis. I've evaluated and treated Morgellons patients, spoken with researchers and other clinicians who work with these patients, read the limited literature on the subject, and reviewed a database of 3,000 Morgellons patients. The Morgellons patients I have seen had surprisingly similar symptoms, with an abrupt onset, often following a toxic exposure. Before the onset of their illness, these patients' mental status appeared to be quite representative of the general population, and some (including physicians) were high-functioning professionals. The condition appears more common in nurses, teachers, and in family members in the same household, which suggests a contagious component. After the onset of the illness, these patients report surprisingly similar symptoms. They have a combination of bizarre dermatological symptoms, cognitive impairments, mood disturbances, and sometimes paranoia and suicide attempts in later stages of the illness. Their symptoms are not compatible with schizophrenia, bipolar illness, substance abuse, or other recognized causes of delusions. When patients complain of fibers protruding from their skin, examination with a low-power digital microscope can visualize and photograph the presence or absence of these fibers. In addition, many Morgellons patients test positive for Lyme disease. The mental symptoms seen in Morgellons are similar to those of other chronic general medical illnesses with psychiatric manifestations, since the mental symptoms fluctuate in a pattern similar to that of the general medical symptoms; and this suggests that the mental symptoms are probably associated with immune and/or toxic effects upon the brain. When these patients are treated with modest courses of antibiotics, their dermatological and psychiatric symptoms often show significant improvement. Without a thorough assessment, Morgellons patients are commonly given a diagnosis of delusional parasitosis, resulting in a delay in proper treatment. Whatever Morgellons is, it is something very different and unique and should be considered as a condition needing further study and possibly listed in the next edition of the DSM. In summary, Morgellons disease and delusional parasitosis are two distinct clinical entities. Morgellons does not appear to be an imaginary or delusional illness and merits the research effort that we see with any other emerging and serious illness. Psychiatric News June 1, 2007 Volume 42, Number 11, page 24 ©2007 American Psychiatric Association pn.psychiatryonline.org/cgi/content/full/42/11/24-b
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josej
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Post by josej on Jun 10, 2007 19:35:32 GMT -5
Hey all, let's honor Toni's thread title: "please say a prayer for Buginaring".
I'm with you when our first response is for revenge. "may he get this disease ten-fold".... but.... I know you don't mean it... not really.. who would wish this on anybody?
We do need to hold Buginaring up in prayer because she's going to have some rough moments coming up. Even if she gets herself free from Mr. Bug.. she's going to need all our rallying around. And since she prefers no direct contact, then let's remember her in prayer whenever we login to this board. I know I'll try to do that.
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josej
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Post by josej on Jun 9, 2007 15:59:16 GMT -5
C, My wife (KJ) and I are both taking daily shots of Rocephin. 1 gram diluted in 3.6 ml of 2% lidocaine HCL sterile water. (If you don't put the lidocaine, it hurts) Plus a whole gram of that stuff is a pretty big shot... something about the size of a grape... and it goes intramuscularly in the butt. But, we're both adults. For pediatrics, I've read that it's used as a one-time cure for things like ear infections, especially when the kids can't tolerate taking it by mouth. So, we're on this, once-a-day for 6 weeks.
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josej
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Post by josej on Jun 11, 2007 12:09:16 GMT -5
Wow a three-pager! Thank y'all for participating. Here are your results on what's KJ's up-her-nose-bug: 1. Star-Shaped larvae from stressed cercaria nematomorphs 2. A free spore that floats around in the air 3. A delusionary starfish 4. Vanella Simplex amoeba 5. Stellate Trichome under-leaf plant hairs (this one got a lot of votes) 6. Hybrid form of Agrobacteria/Stemotrophomas Maltophilia 7. An unknown plant pathogen 8. A Morphogenetic (Arabidopsis) crossover mutation 9. Sporocysts from Miracidia THEN, there was some tangential discussion on the merits of DNA testing, the use of antifungal creams, salicytic acid, aspirin, T-Cell shampoo, and nutrisilver. PLUS we also got to listen in on a lively exchange amongst a few board members. ps to Carrie, I took the shot thru' the scope at 100x, but then it was further enlarged on the image software. In real life the specimen is tiny. Less than 1/4 mm.
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josej
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Post by josej on Jun 9, 2007 9:38:08 GMT -5
This came out of KJ's nose yesterday. Reminds me of a spindly starfish, but it's microscopic.. about the size of a hydra. I'm really clueless as to what it is. There's a dark roundish center with approximately 12 fibrous tentacles. All the tentacles are about the same size. Overall, it's very small... like only 1/4 of a mm. I've enlarged it and made the image a bit darker for better contrast. The original specimen is more transluscent, with the tentacles almost see-thru clear. What is it? Anybody ever have one of these? Help?
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josej
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Post by josej on Jun 8, 2007 16:03:12 GMT -5
Ruth, You think lab results carry any more weight? HaHa. You must be delusional. Oops, sorry wrong word. But seriously, we had a dermatologist actually send samples to a local lab here in Miami. The results came back with three separate findings. 1. skin cells, 2. wood shavings (hmm? how did that get in there?) and 3. arthropod pieces. The derm-doc took one really quick glance at the report and shoved it into my wife's file without comment. I said to him, "whoa... what about those arthropod parts?" Well, you can guess his answer, which was that obviously those bug pieces must have been just contamination with the environment. After that, he never wanted to do any more skin scrapings and actually he told us we should go to a different doctor. Nice, huh?
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josej
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Post by josej on Jun 7, 2007 10:47:01 GMT -5
Hey Kmarie,
I'm the person at the receiving end of those words.
What that doctor said to me word-for-word was, "if I see any bugs or insect parts coming out of her, even if I saw it with my own eyes, I still would not believe it because that would be a medical impossibility".
This was said to me (in the presence of my wife, the patient) by Dr George W Elgart MD, one of the chief dermatologists from the University of Miami's Department of Dermatology and Cutaneous Surgery. This happened at their main office on February 19, 2007 at around 11:00 AM.
Those are not words I'm likely to forget anytime soon.
During the office visit I tried to show him photos I've taken of the arthropods that have come out of Kathy. He would not look at them. Kathy showed him three areas on her body that had dermatological problems: He would not examine her skin, or the rashes on her arms and neck. (1) swollen part of her index finger where she had been bitten by a tick, (2) swollen lymph gland under her neck that might have possibly been caused by oozing sores behind her ear, and (3) an area in her hand that had a small raised bump and a U-shaped indentation.
He did not examine any of these areas. How could he, he was standing about six feet away from her with his arms crossed. He said that Kathy was neurotic, had Delusionary Parasitosis, and that she would benefit from taking antipsychotic medications.
That's when he said those words about not believing it even if he saw it with his own eyes.
And with that pronouncement, he told us he couldn't help us and therefore would not charge us for the office visit.
So, when I read that idiot Mark Hoofnagle's denialism blog it just confirms to me that these guys are not scientists.. even if this guy is a MD/PhD Candidate in the Department of Molecular Physiology and Biological Physics at the University of Virginia. I can't wait until either he, or his wife, or someone he loves gets this disease. Maybe then he'll change his view. He and Dr Elgart.
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josej
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Post by josej on Jun 3, 2007 12:51:07 GMT -5
ummm....
I feel like I have to do a bit of a "disclaimer" here... tho' not sure if that's the right legal term.
Here's the thing. I just re-read my post. And now I'm feeling really stupid. I think when I wrote that I was feeling a little too full-of-myself. So, I came across as some "saint". Which I'm not. Far from it.
I'd like to be that guy who is always caring and nurturing. I'd like to be the hero. But, I'm being hypocritical. I lose it all too easily, and I get impatient... and I may as well be Mr. Bug!
Really, I'm not kicking my own behind... I'm not being too hard on myself... this ain't false humility... the reality is that I can be my wife's own worst enemy (at times).
So, whoever reads this, please don't get the wrong impression that I'm some angel. I want to maintain my credibility on this board, and if I don't post this about myself, then I'd be painting myself as something that I'm not.
Trying to get there... just haven't arrived yet.
And, totally agree with bugsy. You've got to take care of yourself. If you don't who will? Yea, it would be nice if the husband became your true partner in all of this. Maybe if he sees you standing on your own two feet and handling your crisis like a Prov 31 woman, maybe he'll come to his senses. But if he doesn't, then it's his loss.
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