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Post by Nadia on May 29, 2005 9:42:20 GMT -5
Does anyone on here have any doctors that believe them? And if so .. why not start a list of the area where you live, and the doctor.. so that others if they are in the same area, may use them as a resource.
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Audrey
Junior Member
Posts: 59
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Post by Audrey on May 29, 2005 12:47:38 GMT -5
Hey Nadia.... That is an excellent idea....if other would be willing to share their good fortune with board users. I live in Florida.....can't find a doctor to even look at me no less treat me with the protocol that is being used on some people successfully by Dr. George Schwartz in NM. I also can go to doctors in Mass. or NJ, since I visit my children there......right now will have to stay in hotel. I have been advised that if you don't treat it right away you may be in big trouble with your general health. All you intelligent, compassionate people on this board....we all need help. Please, if you have a physician that is open to our disease, let us know. Thanks Nadia, hope you are more successful than I was. Love you All!
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Post by nadia on May 29, 2005 15:33:26 GMT -5
Yeah, I live in Miami.. and will have been here a year as of Aug, so I'm clueless as where/who I can go to..
I had symptoms like this once before while writing final papers, i equated it to being stress related/induced..
this time around however, it's kept up, and it's starting to really worry me.. I plan on at least going to a doc and getting some general bloodwork done for my liver and thyroid, and to check for lyme disease.. but after that..
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Post by Praniw on May 29, 2005 20:53:06 GMT -5
Well, I'm going to make a suggestion based on my own prejudices, I guess. If I had this illness I won't bother with the dermatologists, as least not at first. It is one of the most basic, predictable specialties, and draws people who want to have a dependable 9-5 job. Not the creative types. I would probably go to the best infectious diseases doctor I could find in the area. These drs are trained to think and puzzle things out, and they USUALLY know that they don't know everything yet! They are trained to puzzle over data. They also ask their (same specialty) friends about strange cases. You get more drs thinking that way. Forget a GP or most internists. They specialize in the routine. As soon as it gets odd they refer you to someone. I'm not a doctor but have a dr in the family and hang out with many of them. Take care, Praniw
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Audrey
Junior Member
Posts: 59
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Post by Audrey on May 29, 2005 22:03:43 GMT -5
Hi Again Nadia: I have been to seven doctors, all gave me a diagnosis of dop......I asked to have bloodwork done for lyme and the test that is done to find if there are parasites in your system.....they actually refused. I asked how they could send me away with no help......they said they would not know what to do for me even if they could. They then suggested seeing a psychiatrist. I answered, "so that I won't mind all of the things crawling all over my body, and it would get worse, and I won't mind. No, thank you!" I am planning on traveling to my children up North and try to see someone there. I know one thing, I will not mention any past diagnosis, which will be difficult for me, as I am used to being completely honest. Nadia, if you come across someone that is open to treating us, please let me know. And I will do the same for you. I have one doctor who I told the whole story to his nurse. Explained I was reluctant to see a doctor and be treated the way I have, and only will see him if he will be open to my problem and try to find the reason. She said she spoke to the doctor and said he would see me. However, the nurse could not give me an appointment before I leave Florida the end of June. He is located in Port Charlotte on the West Coast. I'm not sure he will be open to our disease, but would be glad to give you his name and number. He charges more than most doctors, and does not accept Medicare payments. Would you like to try him? I think Miami is about two hours from here. I didn't want to recommend him as I am not sure he will be like the other doctors. ...figured I would see him first to be sure. They are glad to take your money only to tell you you are suffering delusions. I agree with Praniw.....do not go to derm doctor.....I went to three. I also went to infectious disease doctors. As soon as you mention parasites, and the fact that you have seen other doctors, they have already formed dop in their minds. My e-mail is sunni@sunline.net if you would like to discuss this further. God Bless. Audrey
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Post by gmsscared on May 30, 2005 0:43:55 GMT -5
I am so scared to post my docs name as if I do and "they" come after him I have no where else to turn. What if we email Mary and she if she has enough time haha could find a way to get the list to us through personal email like the updates. what do u guys think?
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Post by gmsscared on May 30, 2005 0:45:50 GMT -5
Im already in panic as he is mentioned already here. Im sure she will help, but will take a little time. She has a list already I think. Hugs to all of us
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Post by Oakhill on May 30, 2005 16:54:55 GMT -5
I tried the only infectous disease Doc in my area, had to wait months for the appt., being as he only sees patients on Tues. from 8-12. He informed me I was in the wrong place, my husband nor myself got to say more than 10 words. Extremely insulting! I am willing to travel anywhere a physician can be found! I have 2 small children that go where I go and do what I do, I am worried for their future. The doctor in NM, have a #?
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Post by LMD11011 on May 30, 2005 20:32:04 GMT -5
I live in Houston Texas -- my GP that I have been seeing for about 7 years thought I was crazy.
I finally went to my Grandmother's doctor and he actually believed me. I took in a black light the other day and he was amazed. I take in new literature to him every time I go back and he eagerly takes it from me and the next time we talk about the article.
I have only had this for about 3 months, and it's driving me crazy, I can only imagine those of you who have had it for years. The only place I can get away from them is at work --
BTW -- The Dr is Jason Lanningham with Sadler Clinic in Conroe and Willis, Texas.
Channel 2 News here in Houston has called me twice and hopefully they will do a piece on me. I'll keep all of you in touch.
Linda
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metoo
New Member
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Post by metoo on May 30, 2005 22:38:00 GMT -5
I live in NJ and all 4 members of my immediate family have morgellons. My oldest son (12) is in a crisis unit due to the psyciatric aspect of the illness. It is very disturbing to think that my child could be home if the microb making him ill was treated by a Dr. I also watch my 4 year old suffer. My husband and I and the 2 kids all got sick at exactly the same time. The dermatologist think we are crazy and said the fibers were just hair DUH! The infectious desease Dr said "if this really exsists" we are entering the unknown. He doesn't seem to interested in making it the KNOWN unfortunately. I'd love to have the name of someone to see in NJ, PA, DL, NY. please let me know. Thanks
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Vic
New Member
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Post by Vic on May 31, 2005 8:57:14 GMT -5
www.drcharlescrist.com He is an excellent physician treating both Lyme and Morgellons. Let the receptionist know you have Morgellons . . . you may be able to get an earlier appointment. Good luck.
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Post by marabelle on May 31, 2005 10:40:27 GMT -5
sorry, i have not found any drs here in il that will help, but will definitey let ya'll know if i find one!!! i am emailing a woman here in the state who is recovering from lyme, thanx to a link to newspaper article patti posted last week..the woman from the newspaper was kind enough to forward my email to this woman! so i am crossing my fingers,,, metoo, my heart aches for yuor, with your son in the hospital...i am so sorry...my oldest son is almost 12 and i am grateful that my 3 sons have not suffered to the point of hospitalisation, for this i am grateful...prayers for you and your family, marabelle
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Post by nadia on May 31, 2005 15:51:51 GMT -5
I may have better luck going back home (salt lake city) to get some stuff checked out.. My mom is an RN and believes me.. and i am definitely wary to say much to anyone as i am a mental health professional myself .. I do know in SLC, the doctors see missionaries coming back from all over the world with rare diseases and problems.. another nurse my mother works with mentioned that.. again, if I find anyone who believes, i'll also let you know
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Post by gmsscared on May 31, 2005 19:34:57 GMT -5
Nadia, thats a great idea. they should be allot more open minded about "wierd" diseases. what a shame that it is like this. the doctors i have seen except 4 one dont know a darn thing about it and almost took offence because i ask, just how "up" r u on lyme disease. none of them could give a straight answer and made it worse by trying to cover the question up with"lyme isnt common here" u r right dumb 8*^9 its always miss diagnosed and i wanted to tell him he seemed lazy to me but i need him 4 my pcp so i just said nothing. your idea sounds good so go for it. gogogogogogogo
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Post by spiderlegs on Jun 1, 2005 3:25:15 GMT -5
I posted in another thread that my wife and I will be seeing an MD who practices homeopathic therapy in addition to traditional medicine. He seemed very concerned and open-minded on the phone. We live in Dallas, so if he pans out, I'll post details.
Our symptoms have improved drastically in the last few days. We're too cautious to think that they're gone, but they could (if they're not too busy) make an appearance for the doctor, right?
Our scorecard: 4 doctors, 3 and a half different diagnoses (one said "scabies" another said "sacbies + something else"--we also got Delusional parasitosis and "maybe you got something from the dog").
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Post by Administration on Jun 1, 2005 20:57:00 GMT -5
Just a reminder: We must be careful when posting especially information on Lyme Doctors without their permission. The one I see posted here already has his own site so he has made himself available by doing that.
But that is why we dont have a section of Doctors who may be able to help. We dont want to risk them getting in trouble, or them getting angry at us for posting their personal info. Again. If you are looking for a Lyme Doctor in your area. Please email me or Patti. Kerry - Lymebusters@webtv.net Patti- Lymebusters@yahoo.com
For Morgellons help mail Mary at Morgellons Morgellons@aol.com.
Much love Kerry
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Post by Cindy on Jun 1, 2005 21:46:42 GMT -5
Nadia, What exactly did you mean by being wary to say too much since you are a mental health professional? I would think that people like you are the best people to speak up. The truth is the truth is the truth. I am a critical care nurse and I will never stop speaking up. How could one not speak up? How do these doctors that are afraid to speak up sleep at night? PEOPLE ARE SUFFERING !!! Cindy
favorite quote
"I am not satisfied and I will not be satisfied until justice rolls down like waters, and rightousness like a mighty stream" - Martin Luthur King Jr-
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Post by spiderlegs on Jun 1, 2005 22:09:57 GMT -5
The greatness of Dr. King. I feel cheated that our lives didn't overlap. He was slain 3 days before I was born.
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Post by Been There on Jun 3, 2005 0:35:23 GMT -5
I think you are right to say skip the "regular" doctors and go straight to an infectous disease doctor- but beware that it's not as easy as it seems. Most IF doctors don't like "self referrals" and if you are- most likely they won't consider you an urgent case and you will have to wait at least 6 weeks to get in to see one. I called many IF doctors because I was so frustrated at all the other doctors, and all of the IF doc'd wanted to know who referred me. Finally I saw one, and although he was very nice, he just gave me bacitracin cream (which is now available over the counter) and told me to stick it up my nose and that should kill the staph and the rest will go away. Sorry to say I still have the same lesion on my face for at least 10 weeks. Just an Friendly FYI so you don't get frustrated like I did
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Post by spiderlegs on Jun 3, 2005 15:26:50 GMT -5
You must be a dermatologist...
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