mosco
Junior Member
Posts: 56
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Post by mosco on Mar 13, 2007 2:01:53 GMT -5
Hello all, I hope I didn't scare some of you with my posts from the other day. I have some very strange things going on in my life and being that my illness is in really bad shape these past weeks, I feel it vital to get the info I have personally experienced out there. One of the things that scares me is if I was to pass away and this info just disappears. I've sent some of it to a couple of friends in case the worst happens. In any case, I hope that others who are skilled and knowledgable of internet security and hacking please get a hold of me after what I wrote about the monitoring I've experienced over the past year as pertains to this affliction.
THe reason I am writing is per request of Dr. Karjoo and probably...Dr. Staninger. I saw Dr. Rahim Karjoo today and he asked me if I would attempt to get this ball rolling. He asked me to try to organzie a group of Morg sufferers for a support group setting. I would be grateful for any help as I am really suffering and can't imagine being able to muster up the energy right now. The doctor is located in Santa Ana, Ca. I noticed quite a few people from So Cal on this site. Anyone up for this? IMO, this is really something that is vitally needed. Any input would be appreciated. You can also contact Dr. Karjoo at this office and let him know you're calling about this...
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doraisabel
Full Member
Have Faith in the LOrd, together we will get through this.
Posts: 203
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Post by doraisabel on Mar 13, 2007 2:19:10 GMT -5
I live in southern cal too. I am in pretty bad shape. I wish I could get a Dr. to look at all the strange things going on with. I have had some bad times because of this. I have even lost my eyesight because of this damn thing. I would love to help u, I will call him tomorrow. I live in Whittier by the way.
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mosco
Junior Member
Posts: 56
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Post by mosco on Mar 13, 2007 2:40:57 GMT -5
That would be great. I think if we could get maybe half a dozen of us together, initially, and get toghether, that woud be great. I think we should do this as soon as possible. Time is crucial. My neighbor died 3 weeks ago and I've felt close to death a few times in the past 2 months. Speaking of my neighbor, I talked to her brother the other day to get some details about what happened, one thing he told me is that she showed positive for legionairres! Now how funky is that? Isn't Legionairre's passed from the environment?
I'm not trying to sound over-dramatic. This is what I really feel. After months of being tentative for fear of being diagnosed as delusional, I've treaded lightly with these doctors and end up leaving shell shocked. I always run through my mind how it is I'm walking to my car and blown away that these cos aint The downside of this is I leave the doc frustrated and think that maybe i wasn't clear enough just how bad I feel. It's not like I haven't experienced sickness before. I've had a couple of pretty serious illnesses in the past. IN comparison, this is 10X worse. After 14 months of getting diagnosed for everything from "indigestion" to "depression" to a flu-like virus", I feel I have to be a bit more forceful with these quacks. Ya know?
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Post by bannanny on Mar 13, 2007 3:29:15 GMT -5
I'm in So Cal too, but it's a good 2-3 hr. drive for me to Santa Ana. What exactly are you trying to put together and will it be at Dr. Karjoo's ofc? Sorry, I'm dense today.
Hi dora! Long time no hear....... I'm sorry you're doing bad again, you sounded so good when I talked to you last. How are your eyes doing now? Hope they're ok.
hugs ~~ bannanny
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Post by freaky on Mar 13, 2007 3:39:03 GMT -5
Wish someone wanted an Austin group besides me. boo hoo
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mosco
Junior Member
Posts: 56
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Post by mosco on Mar 13, 2007 6:26:41 GMT -5
Yes, it will be at Dr. Karjoo's office.
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Post by belikewater on Mar 13, 2007 12:32:41 GMT -5
mosco,
We already have the best support group in the world right here on this board.
Breaking us up will not solve this any faster.
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doraisabel
Full Member
Have Faith in the LOrd, together we will get through this.
Posts: 203
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Post by doraisabel on Mar 13, 2007 13:03:59 GMT -5
HI bananny! Good to hear from you. I cant believe how bad I am again. Except this time its worse. The symptoms are even more unbelievable. I have a dr's appointment with a new dr. who knows what I have and is willing to discuss the illness.
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maf
Full Member
Posts: 110
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Post by maf on Mar 13, 2007 14:53:00 GMT -5
i sent karjoo several emails with no replies... but then i don't have fake silicone boob implants either... i only have the largest morgellons lesion on the planet... p!ss on him...
maf
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Post by bannanny on Mar 13, 2007 22:51:10 GMT -5
Hi mosco.......If this is just to simply put a bunch of us in a room to give each other support, then I agree with belikewater. All the support I could ever hope for is right here. Also, you never know what could happen if alot of morgies were in close proximity to one another. I think it's possible that some of us could have a very intense reaction with each other....... just my thoughts.
Hey dora....... Sounds like you're pretty bad again and I'm so sorry. I hope your dr. proves to be a human being who has a wise old soul, a compassionate heart....... and an Enstein mind! Good luck and let us know how it went, k?
luv ya's ~~ bannanny
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Post by freaky on Mar 17, 2007 4:46:18 GMT -5
Yep Bannanny, you gotta point. I don't want any support group in Austin. I'm just one of those people who need people, but not if they got kooties. freaky xo
ps. Maybe it's cause I heard that people that need people are the luckiest people in the WORLD. night nite.
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Post by classykaren on Mar 17, 2007 10:37:01 GMT -5
I feel meeting all over the country would be wonderful just like AA started AA is on the internet but most members also go to meeting this would be wonderful support for us all and may get positive media exposure then
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Post by See Jane Crawl on Mar 17, 2007 14:22:47 GMT -5
I to sent him a couple of emails a few months ago & got no response from him. I thought he was going to start the research on this disease back then, what happened? He doesn't sound very sincere in his willingness to help, why don't you ask him what happened to all his help a few months ago when we all emailed him when he was looking for patients that have this disease?
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Post by zabrubon on Mar 17, 2007 14:39:39 GMT -5
Hey easy on the fake boobs, i did this when i was young and regret it to this day, but i am still valuable with or without the fake boobs. In fact, i never wear any low cut or tight, so no one knows that I have them and i don't draw attention to them. If i had the money I would get rid of them in a heart beat.
Please, from you who have never had low self esteme and never needed a lift from what childbirth does to breasts and from old boyfriend making fun of me, be easy on us fake's.
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Post by cyn on Mar 18, 2007 16:29:19 GMT -5
Why would Dr. Karjoo care if we had a support group? He knows we have this board. What does he hope to gain?
IT JUST DOESN'T FIGURE.
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Post by lydski on Mar 19, 2007 10:46:17 GMT -5
ditto, cyn
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Post by browncircles on Mar 19, 2007 13:26:13 GMT -5
Maybe he's protecting himself. Maybe he wants the support group to approach him with a request for experimental treatment. I don't know.
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Post by freaky on Mar 19, 2007 16:41:50 GMT -5
ChicagoBonnie, You're being a little hard on yourself. If you could give me your fake boobs, I'd grab em in a minute, & you wouldn't see me hiding them. I betcha you're looking quite perky indeed. How would you like it if everyone said "there goes ChicagoBonnie, the saggy tit brad"? You must have something else on your chest aside from your voluptuous breasts, & you're getting confused. That's why we're here.  freaky |
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Post by jj on Mar 19, 2007 21:05:55 GMT -5
Why would a doctor (especially one trying to help morgellons patients) suggest a support group? Morgellons patients who have had validation and support are much easier to work with therefore easier to treat. Pick one of your darkest, worst days where you truely felt you would loose it and NO ONE was there for you. Now pick one of those days right after you got off the phone with a fellow suffer who validated your fears and concerns and you had a sense you would be ok because you were no longer alone. Under which incident would you have faired better at a drs. appointment? The 'peace of mind' therapy you can achieve from support whether from this board, a friend, or a support group can make all the difference in the world for the patient Dr. relationship There are 'good' Drs. out there who have been there and done that numberous times. They know what makes their job more managable and what makes it nearly impossible. ... JJ
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doraisabel
Full Member
Have Faith in the LOrd, together we will get through this.
Posts: 203
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Post by doraisabel on Mar 20, 2007 3:49:16 GMT -5
I called to schedule an appt. with him and was referred to Dr. Hildegard. You need to see her first and she will decide if you see Dr. Karjoo. I have an appointment with her tomorrow and I am so excited. I am having one of the worst breakouts ever. I shaved my head again wich really did not go to well with my husband, he has had it with me. I have track marks all over my body from head to toe. The little black hairs that Georgia peach refers to and I have diamonds coming out of my skin like my son says.
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freaky