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Post by spiderlegs on May 25, 2005 16:50:19 GMT -5
The doctor told my wife her condition with this parasite is common but they didn't have a name for it and that she shouldn't tell anyone about it. That this parasite attaches itself to certain proteins that would be gotten rid of by prescribing her Orap (Pimizide), an old anti-depressant they don't prescribe anymore.
WTF?!?! I might have punched him, if I had been there. Oh, and he kept our samples. I'm in shock, I really am.
We're not sick, folks, we're just nuts. Go back and watch TV...
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Post by FYI on May 25, 2005 18:41:48 GMT -5
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Post by spiderlegs on May 25, 2005 20:04:40 GMT -5
Oh, sure, with the total lack of any pharmacological advancement in the last 40 years for those agents AND anti-psychotics, it makes total sense to prescribe something which isn't prescribed anymore and then lie about it. He lied to her face.
Needless to say, he wouldn't take my call afterward. He basically stole money from us. He didn't study the samples she brought with her. He didn't examine her bites, other than an extremely cursory view.
What are doctors afraid of? Could it be that the company responsible for the worms also owns pharmaceutical companies? No, couldn't be...
Of course, they'd also have to document this new parasite and then cause a panic by admitting they can't do anything to cure it. They really can't, but instead of trying to help their patients, they risk further jeopardizing the health of someone who trusted them. What if my wife had been one of those people who trust doctors no matter what? Then her health would deteriorate further, while she could be experiencing one of the multitudes of side effects associated with her "anti-fungal" anti-psychotic tonic.
I'm not a conspiracy theorist, but there is something wrong when a doctor won't even examine someone, tell her that he knows what it is but that "it doesn't have a name", and then prescribe a stone-aged anti-psychotic (but refer to it as an anti-depressant) with more side effects than crack. Or did I wake up in Bizarro World this morning? Wrong is right? Good is Evil?
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Post by skytroll on May 25, 2005 20:15:33 GMT -5
So sorry spiderlegs,
Can she get on some multivitamins? an antioxidant?
When Reverse Psychology has been used on us for so long by the so-called left - in academia: medicine, history, art, literature, science, physics, chemistry, and things have been stolen by the government for it's own use to gain power and control and then the so-called right does the same thing in reversing the reverse psychology, we arrive at the same point NOWHERE
WE HAVE NOT PROGRESSED
If we would just stop reversing, we could go forward!
skytroll
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Post by spiderlegs on May 25, 2005 21:22:11 GMT -5
We are taking a fairly comprehensive herbal treatment, but that's not the point. I need to know howe contagious we are. We already infected my mother-in-law. My son, thankfully, hasn't shown any more signs (which means he may have initially been mis-misdiagnosed when we were told we had scabies). I have sent him to stay with my mother until we get this resolved. But we can't, and I want to know why. I'm pretty tenacious if I sense I'm being stonewalled.
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Post by jj on May 25, 2005 22:12:20 GMT -5
Sorry to hear of you and yours experience.
By no means are you alone in that respect. These stories are so infuriating. Orap and one other that slipped my brain fogged mind are supposed to be the drug of choice for our so called delusion. It's only our imagination gone wild but their still perscribing something with antiparasitic properties. According to Koo and his worshippers these drugs are the cure. WHERE ARE ALL THE SUCCESS STORIES? Wouldn't these people speak up and tell all about their miraculous recovery from these wonder drugs or would they stay in the closet. The best therapy for a suffere is to help others. I sure as h-ll would be screaming from the rooftops. Non of it makes any sense.
Still hangin JJ
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Post by spiderlegs on May 25, 2005 23:08:04 GMT -5
My thoughts have turned dark with this whole situation, and when I let my mind wander, I think they prescribe that poop so we'll zone out, let whatever is inside us eat us up, and then we die without them losing a bit of sleep over the whole mess. I don't think darkly that often, but these dark thoughts DO come. These are dark times for my family. My wife and I have quarantined ourselves away from other people, so I haven't personally interacted with anyone in over a week. I haven't has any conversations just for their own pleasure, haven't gotten to read my son a bedtime story in ages, haven't made love with my wife in a month. And I'm about to throw everything we own away, at least the furniture and most clothes. And then we'll move from here where we've run our business and lived in a warehouse that used to be a Studebaker showroom.
In 5 weeks, our lives have completely changed. We used to book bands to supplement our income. We lost $500 on ourlast show, but it was still a good show and we had a blast. It's been dark ever since.
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Post by skytroll on May 25, 2005 23:25:24 GMT -5
Hang in there spiderlegs and family,
We know how you feel and if you can finds ways to deal with it naturally, do so.
There are many other posts here that mention all the things we have used.
Vinegar in a spray bottle, Clean with ammonia if you can. Wash clothes in Clorox. Vicks helps soothe and cocoa butter, soap etc. Antibiotic cream, vaseline etc. Just some ideas. Keep the light ahead of you.
skytroll
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Post by jj on May 26, 2005 0:11:00 GMT -5
I can totally relate and think we all have those dark moments. Try not to let it consume you and your life. You have many others here to turn to during those dark moments and you yourself are helping others by just being here sharing. Having each other to relate to and help is the best therapy there is. I constantly have to tell myself to shut out whatever I cannot control but venting every once in a while isn't a bad thing. I try to cherish those close to me in my life as if they were all that I have. Sometimes it really shows . Live life to it's fullest and keep the PMA flowing. Still hangin JJ
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Post by marabelle on May 26, 2005 10:16:26 GMT -5
spiderlegs--welcome to the dollhouse ;( if it is any consolation whatsoever, many of us here have been in this spot for many years...but we are still kickin'....i don't mean this to discourage you, ie you and yours will be incurably infested for the rest of your days...just to offer some hope that you are NOT ALONE in your frustrations and pains...and the more of us there are, the more minds combined...something has to break... tho you may feel as tho you have fallen into surreal hell, your mindset and focus are key in overcoming...in my experience, the more angry and adamant i would get with respective doctors, the easier it was for me to fit into their pigeonhole 'diagnosis' of delussional paritosis...so DO NOT LET THEM SEE YOU SWEAT, OR FEAR, OR FRUSTRATE--THEN THEY WILL KNOW THEY HAVE WON....peace, marabelle-- ps and yes the most heartbreaking aspect of this all is the effect it has on our children...we can only work for answers for them, and commit to staying vigilant for the sake of their future...
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Post by spiderlegs on May 26, 2005 16:13:53 GMT -5
Today was my turn, and given my newly found insight into the ethics of the medical profession's views about our condition, I decided to start over at the bottom. I Went to the ER and acted like "my scabies" just wouldn't go away. "why?" I asked "why?" And I told my doctor, who was very cool, btw, about all the wierd stuff "my scabies" were doing. She said, "well, that doesn't sound like scabies at all." "Oh...it doesn't?" So, I got a referral "upstairs" again, and I got an emergency squeeze in to a specialist tomorrow. I'm going to still play it like a dummy and say all the strange stuff my scabies are doing and let the doctor tell me this isn't scabies. Then I can ask, "what do you think it is?" I still expect to get stonewalled, but as long as I don't act like I know what's wrong but ask questions in such a way as to finess the doctor into thinking my case is extremely unusual, I think I may do OK. Today, it was like using the Jedi mindtrick. The doctor was several years younger than me, she was really baffled by some ofthe things I described (but still think it's probably scabes), and she prescribed me some totally different meds, including antibiotics, which I need because some of my bites have become infected. I'm going to make a sexist remark: I think female doctors care more about their patients than male doctors. I don't think they automatically dismiss you if they sense "Cassandra." And the fact is that my county is concerned about, at the very least, a new difficult to treat strain of scabies, and at the worst, an outbreak of Morgellons.
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Post by spiderlegs on May 27, 2005 11:39:20 GMT -5
Went to the dermatologist today. She said I didn't have scabies. She said I probably got something from the dog that's gone now (even though I can still feel it). She ignored my question about the worms in my bathwater and when she got to the anti-depressant, I burst into laughter. Then I felt guilty for seeing something, either a fiber or one of those skin dots, fall off me. I don't think it will infect anyone, but how nuts would I have looked saying "somethingshot off me. It's the WYRM!"
Maybe if someone in the health profession gets it, they'll take it seriously...(I don't really want anyone else to get it--that's just the darkness talking).
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Post by nurse on May 27, 2005 19:13:36 GMT -5
Even if the doctors treat with the respect you deserve - you have hired them after all - I'll bet most of them secretly realize they won't see anything they understand in their microscopes or know how to instruct the laboratories how to handle it - and that they don't have time to do reasearch on unknown stuff - so why rock the boat and try and find someone to figure out what this is when the medical profession has encouraged the use of the DOP diagnosis? Anyone reviewing their history of patient care would give them an A+ for that diagnosis the way things are now!
I agree women doctors might be better for us. In our society arrogance isn't tolerated in women like it is in men.
I haven't been to any doctor about this affliction, but I do plan to talk the veterinarian into at least one prescription (for um...an experiment) when I see her in 2 weeks.
sign me Disgusted
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Post by SpecueLatin on May 28, 2005 4:02:21 GMT -5
Maybe it is not the gender, but the age.
Older doctors have seen more, I have a wonderful male dermatologist who has the integrity to stand by what he knows and be open to what he does not understand. His self-esteem doesn't get dinged when he doesn't have an answer. He is willing to keep learning in this crazy world and listens to everything I ask about. He also laughed and broke in a big grin, when I whispered under my breath at the end of a long congecture.... "or do you just think I am DOP?" He treats me with excellent consideration.
Where as being a white female in my "later?" years.. 40's, I fit the most likely to have DOP description, and also the easiest group to brush off. (We females past our reproduction years don't get the same "courtesy" we once did.)
And then what about those 'cat fights".. my experience is that most female doctors and nurses hate my guts. They usually aren't as intelligent as the male peers, unless they are the top-flight female who really has the remarkable intelligence.
Sorry to be down on the females, but being nice won't get the job done, and being a fr**king know-it-all that knows nothing doesn't a professional make.
Most women are wonderful, it's these career-orientated ones that can't cut it, but make like they are superior (narcisstic) that get stuck in my craw.
So, just remember there are lots of good scientifically minded males that have good hearts that lead them and want to help by getting the job done, they are task-oriented ans show their caring that way..
not by patting your hand and crooniing and giving you a pitiful look before they tell you to leave because they can't help you.
Sorry I can't take it. I always think of the many kind-hearted men that are ignored and given the short shrift because of a few bas turds.
and in my experience, women are no angels..
Spec
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Post by nurse on May 28, 2005 13:42:36 GMT -5
Maybe it is not the gender, but the age. and in my experience, women are no angels.. Spec Yes! per older doctors. And true - women are no angels - what they lack in arrogance is often made for in nastiness. I've worked with women doctors,no problems, but women are so much more intimidating (to me,) that I've never used a woman for a doctor. Exception: a specialist once at the urging of my GP. After I told her of illegal drug use 30 years back she treated me like a piece of dirt, let her feelings show openly on her face, knowing absolutely nothing else about me except age and sex, not employed, and maybe heart rate and blood pressure. The feeling of diminishment that clouds over you is hard to describe, but its bad enough that I'll never go to any doctor for Morgellons problems, unless forced to to save my life. I'm so glad you have a compassionate dermatologist, Spec. I've had a derm for 35 years nearing retirement whom I always admired for finding an unusual diagnosis for me,(long ago, not related to now) and trying new innovative treatments. Other doctors, told that dx, always said "No.. really?" But his exhalted position quashed any other comments. I went to his associate (woman, btw) a few years ago when he was out of town and my itching scalp was driving me crazy. Next time I saw him I told him, just so he had this information mind you, that I didn't think she was a particularly good doctor. He said, "well I trained her" oops! insert my foot, and response, a feeble laugh, here. No more was said. I used to have fantasies about how his students could use me with Morgellons symptoms for a research project, but I don't think that's a realistic wish.
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Post by bannanny on May 28, 2005 18:49:48 GMT -5
I too am in that dark place today..... I almost made the mistake of mixing my bleach and amonia, the confusion of a Mor-jello afflicted brain I assume. Well........that would be a cure now, wouldn't it? WON'T SOMEBODY HELP US!!!!!!
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Post by spiderlegs on Jun 1, 2005 3:17:58 GMT -5
Later today, the wife and I are trying an MD who practices homeopathic medicine. Will post results later...
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Post by spiderlegs on Jun 1, 2005 17:09:08 GMT -5
Wonder of wonders! Miracle of miracles!
We found an MD in Dallas who is going to treat us. Oh, he actually cares! He examined my wife and me for an hour each. He confirmed with my office that we are still contagious--which I need, because I REALLY enjoy my job and the people with whom I work. If I lost that job because of this nutty freaking bug, I'd really fall off the deep end. I've had alot of bad luck lately--I'm not going to bitch about it, this whole board is pretty much "The Hard Luck Club"--but I look at my lovely, wonderful wife who is resting now, and I have hope we might get better.
We haven't even begun treatment, yet. But after 4 doctors and spending an entire paycheck, this stands as a victory--albeit a small one--but a victory nonetheless. And for a day or so, I'll rejoice. I begin my treatment on the 8th. We'll know at some point after then.
Due to board rules, I can't post the doctor's name or contact info, but if you live in the North Texas area, I will gladly respond to your private message, privately.
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Post by gmsscared on Jun 1, 2005 23:24:08 GMT -5
Good Deal Spiderlegs! Thankgoodness! I can almost feel u smiling U sound so in love w/ your wife and child. I wanted to respond to a post u made earlier. Dont move, it doesnt help that i have ever heard, others can reply w/ thier experience 4 u. I hate to see u do that, the fibers and everything come out of our body as far as i know so if u move same there. if u get help from this doc i hope he can help w/ your son too. u must get back together, how old is he, i forgot. it is summer and he might be having fun. but heres the deal, unless u plan on staying away the rest of your lives, u need to get him back as soon as treatment starts for u and cindy and have a tr.ment for him too. U didnt mention the med did u? did this doc ask about treating him, he might not show symptoms, but i wouldnt take chances. if he will have any herxing better now before school. i hope i havent spoke out of line, i only care. my son has become very ill, mimics several diseases and i took him to the dr yest. and today. i will finally get help . FEEL ME SMILING we just keep on keepin on all my love to u and yours ( G )
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Post by spiderlegs on Jun 2, 2005 10:46:29 GMT -5
He's 7. I'm going to see him today, though I'll keep my distance. We need to move. Those "feather drillers" are all over his room. We feel worse just going in there for a short period of time. We also live in a warehouse downtown and we'd like a yard. We used to be active in the music scene here, but all that came to a halt. We've reassessed how important living down here is, and it's not, so we're out as soon as we can make it happen.
Thank you for your kind words. ;D
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