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Post by rickndebby on Jul 28, 2005 13:34:29 GMT -5
Hello All, Well we tried...We put ourselves in the hands of modern medicine at the University of Michigan aweek earlier than expected I might add, but as many of you can probably guess we were actually told to see a shrink because we " both " are suffering from DOP....BOTH!!! I was appalled at the fact that as medical professionals they wouldn't even listen to a word of our story.....I had all I could do to keep from going to jail for smacking that arrogant, condescending SOB in his mouth....We pretty much have lost all faith in the medical " professionals " at what is supposed to be one of the top research medical centers in the world...Ha...that is alot of BULL....Any way we are going to change our diet accordingly and we will keep reading all of the posts to see what's next...Good nutrition and a clean environment are the paramount goals for us now.....We might try some of the remedies mentioned in so many of the posts here...But at this point we don't really know where to turn next.....As I said in other treads it seems a diet high in sodium seems to make what ever these things are want to come to the top of the skin.....That's got to be a good thing......Any and all suggestions are welcome so feel free to chime in at any time...Thanks again for being here...all of you have been so very kind....Rick of rickndebby
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Post by Guest on Jul 28, 2005 13:47:04 GMT -5
That is terrible. I'm sorry. I don't think it's mainstream medicine that is your problem. It is the arrogance and stubborness of those in that profession. =( hang in there. Jess was also diagnosed with DOP. She started reading more and more about Candida, and eventually went on one of those Candida diets. Maybe you should read her uhh recent posts. Good luck.
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Post by SpecueLatin on Jul 28, 2005 14:04:35 GMT -5
Quick you guys, don't give up, there are good doctors.
Go read May 2005 article that Patti turned up on the Lyme board!
This might explain the interplay between the fungal and the Lyme.
He has seen 80 patients. Successfully.
spec
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Post by QuestionHair on Jul 28, 2005 14:30:09 GMT -5
I would love to know there is a doctor who will treat this. (But not a predator product-pushing MD) - couldn't find anything May 2005, just got the home page of a fox news place.
Rick of rickndebby - did the doctors do ANY tests? or look at you both? or look at anything?
Are you aware that before they jump to the DOP diagnosis there is a protocol they should follow?
(I've GOT to find that DOP outline link or document again)
From the time you started the appointment, how many minutes was it until they said their DOP diagnosis?
I wonder if MD's are aware that they are not supposed to jump to the DOP diagnosis until tests, etc. have been made.
QH
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Post by rickndebby on Jul 28, 2005 15:42:49 GMT -5
Testing was done....A variety of tests...A complete blood work up even a chest x-ray....How ever they refused....REFUSED to do a lyme test of any kind....."It just dosen't look like lyme to us "......They went on to say that Lyme Disease is not a problem in Michigan....Talk about arrogance...as if they have the all mighty knowlledge of everything....WE will hang in there ...but as far as the University of Michigan and their "GO BLUE " they can GO BLOW....Thanks spec for the encouraging words as I will continue to read all that I can....The candida diet is my next project of research...Thanks to all once again...Rick of rickndebby
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Post by ANTHILL on Jul 28, 2005 16:21:51 GMT -5
Hi R&D For doctors that are suppost to be smart they are pretty stupid How's that for an oxymoron? you could just take the oxy part out and call them morons for short
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Post by rickndebby on Jul 28, 2005 17:18:36 GMT -5
FRUSTRATED AND ANGRY...I'm sure many of you have simular stories to tell.....I guess the anger comes form pure raw "arrogance " ...I consider myself a well rounded, educated individual with the ability to be open minded and also the ability to understand most anything said to me.....I get angry when I'm talked at instead of talked to....Iv'e said it before that with insurances and HMO's set up as they are we as patients are being treated in assembly line fashion....Treat the symptoms....not the root cause....In this case they showed NO interest in even considering an alternative cause.....I can't begin to describe how arrogant and condendending this " professional " was....I have to say to all the members here and those who are guests ..THANKS for allowing us to be here.....It probably has kept both of us sane....Rick of rickndebby
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Post by SpecueLatin on Jul 28, 2005 20:01:18 GMT -5
Hello QH lymebusters.proboards39.com/index.cgi?board=lyme&action=display&thread=1122555940The story is an interview of the doctor conducted in May 2005. I don't see references to lesions, but Ginger Savely, NP states that when the Lyme symptoms subside, so goes the morgellons. So, maybe this doctors method to master the Lyme disease may cure the morgellons. It is a different approach. He also was a sufferer. He has treated 80 patients. all in the past year or two I think. The link is from our own Lyme Discussion board, and Patti provided the link, as well as pasted the article in its entirety. spec
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Post by bigmike on Jul 28, 2005 20:48:24 GMT -5
rickndebby
You have just told my story, except substitute Missouri for Michigan and don't change a word. Happened last week.
Big Mike
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Post by QuestionHair on Jul 28, 2005 21:41:40 GMT -5
Thank you SpecueLatin.
After my surprising experience with doctors not believing my symptoms - I searched the internet for answers.
I found Nuspa, and here, and have focused mainly on the parasite aspect coming after a weakened immune system, and/or mold or fungus or yeast infection.
I had a MRI done this year, for the Valley Fever. I was told I have arthritis in my knee and lower spine and neck. That would fit in with Lyme.
Now I would like to get a Lyme test. Although it looks like an HMO might not do it.
Thank you for the article.
QH
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Post by itchingntexas on Jul 30, 2005 0:14:11 GMT -5
Yes, arrogance. Haven't I seen it. The second dermotologist I saw would giggle and smirk condescendingly over my shoulder at his nurse. He also told me he didn't see anything and then had the nurse ask me to undress. He then handled me like a piece of untenderized meat. He actually pulled my breast out of the BOTTOM of my bra, and then stuffed it back in there like he was dressing a Christmas turkey!! I was in such shock that I couldn't say a word. I wanted to cry. I sent a letter telling his office that I would not pay the remaining $35, (I paid $99 to be treated like a dog), and I asked for my other payment back. They tried to act as if they never got the letter and had the audacity to send me a bill. I was very polite the first time...and although I was still a lady in this second letter (wrote it today), there were no holds barred. I cited him for his awful bedside manner, his condescension, his abruptly interrupting me every single time I tried to speak or ask questions, and the fact that he couldn't identify the fact that I had some type of parasite. ( I let him know that I have seen a doc from India, now, who says we indeed have some sort of parasite. I know, "duh", but at least he listened and is trying to help...that's another thread!)
Anyway, Rick and Debbie, I feel ya! Gary's and my email is posted with our info. Feel free to email or private message us. It's pretty funky to deal with this as a couple, huh? Nice to have someone to talk to. We could also share what we've been doing, which has been working. Luvs, Heather (itching)
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Post by Chem G on Jul 30, 2005 17:45:20 GMT -5
Testing was done....A variety of tests...A complete blood work up even a chest x-ray....How ever they refused....REFUSED to do a lyme test of any kind....."It just dosen't look like lyme to us "......They went on to say that Lyme Disease is not a problem in Michigan....Talk about arrogance...as if they have the all mighty knowlledge of everything....WE will hang in there ...but as far as the University of Michigan and their "GO BLUE " they can GO BLOW....Thanks spec for the encouraging words as I will continue to read all that I can....The candida diet is my next project of research...Thanks to all once again...Rick of rickndebby Did you REALLY expect anything else from the arrogant U of M??? If you want some answers and two cures (one natural and one antibiotic protocol) you can PM this SPARTAN who has discussed his theories with a REAL infectous disease doctor who's figured most of this out and it all parallels what I've preached with one twist that does implicate candida but NOT as the cause - actually it is a food source for the causitive organism. BTW - I am 99% cured. Chem G
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Post by jeffinhburg on Jul 30, 2005 18:10:45 GMT -5
You mean there IS an actual ID doc who's figured this out? Wow! That is fantastic news for all of us. I'm anxious to know what the twist (and proper dosage and time frame, if we haven't already figured it out) is if you'd care to PM me when you get caught up.
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Post by Jeanne on Jul 30, 2005 19:55:18 GMT -5
[glow=red,2,300][/glow][shadow=red,left,300][/shadow]Hi Chem G! Can you share this or tell me what PM means (i know I'm still Betty Rubble with message board technology) or tell me how to email you? I respect your science on this. I'm thrilled to hear your progress. Go SPARTAN! 8-)Jeanne
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Post by SpecueLatin on Jul 30, 2005 21:31:32 GMT -5
Hello Rick n Debby,
Funny I was reading last night, an ILADS article I believe that named Michigan area as one of the big five. If I have it, I will post it so you can download it and prepare to add it to the fodder.
The fodder being that little addendum you will be placing in your medical files.. we have the right to do that, unless that is the next right they decide to take away. or is that a "rite"
anyway, Wally is going to post that for us, when he finds it.
And the additional post? the one that says how these docs are suppose to be sending an entomologist to your environment to study first, before making the DOP diagnosis.
Hello Question Hair, I think that diagnosis procedure may be in the current DSM.
spec
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Post by jj on Jul 31, 2005 11:05:20 GMT -5
Thank you SpecueLatin. After my surprising experience with doctors not believing my symptoms - I searched the internet for answers. I found Nuspa, and here, and have focused mainly on the parasite aspect coming after a weakened immune system, and/or mold or fungus or yeast infection. I had a MRI done this year, for the Valley Fever. I was told I have arthritis in my knee and lower spine and neck. That would fit in with Lyme. Now I would like to get a Lyme test. Although it looks like an HMO might not do it. Thank you for the article. QH QH, Want to say that I am glad to see you posting here. Have enjoyed reading your posts elsewhere. Now we can all read them here too! .............. You may be aware of this already, but just incase; have you tried glucosamine & chondroitin combo? It has taken care of the joint pain and arthritis like symptoms. It will take aprox. 3 to six weeks (for me 2) to feel the results. .............. Again welcome. Still hangin, JJ
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Post by jj on Jul 31, 2005 12:27:27 GMT -5
Hey, RicknDebbie, Really sorry to here of your experience. Wish it wasn't the case but it seems to be the norm in most cases. My first doc visit was to a docinthebox in a generally poor neihborhood. I was just trying to rule out lice or scabies at the time. He commented on the temp of my skin and wanted to shoot me up with something for what he thought was an allergic reaction. I refused that and asked politely " isn't there some sort of test you can do? He lost it and came back with an "HOW DARE YOU question me" responce. I responded to him with "How can you possibly make a responcible diagnosis when I have been your FIFTYSIXTH PATIENT OF THE DAY." Well that helped his cheery disposition as you can imagine. No kidding. There was a waiting list and there were still ten people after me when I last checked. There was a nurse who overheard all this and pulled me aside and gave me the business card for a derm down the street who would "RESPONCIBLY rule out scabies". This was my only bad experience with doctors. ............... The last one was with a GP who's bed side manner was worthy of an award. All general testing and blood work was done including HIV testing which he wanted done before any other immune testing. All tests were within the norm. At this point I had just found The old Comfort Zone and NUSPA and had given him printouts. He did refer me to a derm who reluctantly did skin scrapings at his insistance. After all this he quite humbly told me that he didn't know what was wrong with me but did believe there was a novel problem and said he would be there for me when I found anymore info we could apply. ............... All my experiences combined (some I didn't mention) brought me to the conclusion that I would have to try and treat symptoms that were applicable (not waisting anymore money) and ride this out untill there was something more credible. Sorry to ramble but it's been a while since I shared this. Good luck to you both and one day we will all find a magic bullet. ............... Still hangin, JJ
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Post by Lisa on Aug 1, 2005 0:10:11 GMT -5
When I first started getting the strange symptoms, I called my internist and OVER THE PHONE she said.... "There's something called Delusions of Parasitosis...." Then she proceeded to tell me about a patient of hers that brought in a piece of "carpet lint" and said it was bothering her and would she look at it under the microscope. I realized right then and there what I was up against and didn't say another word.
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Post by questionhair on Aug 1, 2005 0:38:19 GMT -5
Spec - thank you for the referral to the DSM, a book that I wasn't aware of. Some internet searching with my bookmarks, etc. didn't come up with the same DOP link I had read, outlining procedures, etc., but there was one I had from UC Davis - which, of course I can't find right now (folder? or bookmark? - by now I have gobs of both)
I keep thinking that all the things I've read, and kept copies or bookmarks to will lead to . . . what? a cure? an answer that will change the current system's behavior where doctors seem to be indoctrinated to leap to DOP?
JJ - thank you for the welcome.
and, Chem G - if I figure out how the PM works, I'd be interested to hear, too, about your experience and any information on a potential cure. (99% is impressive)
Thank you,
QH
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