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Post by QuestionHair on Jul 28, 2005 19:37:05 GMT -5
I was so disappointed to read rickndebby's experience with the University Hospital. Hang in there you two.
My own experience was disappointing - the last doctor I saw was a dermatologist. He treated me like an idiot and the more he did, the more I resented it.
When I finally said "You are . . . so . . . condescending" to him, it was through gritted teeth, one syllable at a time.
Well, I know what not to say to a doctor next time. But, I don't think there were going to be tests done, he already was leaning toward DOP.
Anyway, prior to that my infectious disease doctor could have listened to my symptoms and then asked questions that would have led to tests.
What are the questions doctors should be asking?
What tests work best?
What labs should be used?
Maybe this could be outlined for the doctors in order to make progress.
QH
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Post by Hope on Jul 30, 2005 23:43:47 GMT -5
Great thread Question! I think a blacklight test should be first and foremost. Secondly, they need to dose us up with some type of sulphur compound to observe this crap that will expel like crazy even the first (sometimes especially the first) time it is taken. I had this effect even with the homeopathic sulphur 6X the first several times I took it. And they need to LOOOOK!!! They don’t realize that we can feel things that are so dang small or completely invisible until the blacklight is shined upon it. Well, we do feel it and the sooner they realize that the better off we all will be. They need to be able to identify this under a simple microscope just like most of us learned to do. A proper Lyme test is a must. If this is still not enough to confirm a case of Morgellons then observation in a controlled setting should be done with emphasis placed on observing a patients skin after bathing. We all know that when it always comes out. This will work for most Morgies but not necessarily the ones who have been treating. We will need to be asked a series of questions and they must learn to distinguish between who is really delusional and who is not. They have failed miserably at this part and have caused so much pain because of it. These are my thoughts and had a doctor performed any of this type of investigation on me then I would have thought that one medical professional actually knew more about this disease than me. That’s a very unnerving feeling by the way. Did I leave anything out? Peace, Hope
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Post by jeffinhburg on Jul 31, 2005 9:06:52 GMT -5
"If this is still not enough to confirm a case of Morgellons then observation in a controlled setting should be done with emphasis placed on observing a patients skin after bathing. We all know that when it always comes out. "
This is so true, Hope. Before I started treating with anything, and was still trying the docs, I found I got the same effect by applying alcohol - something I'm sure they had on hand at a hospital, lol. I told the docs this, and that if they let me wash with water to remove any dirt, and then soak so much as a finger in alcohol, or rub it on my arm, they could take all the samples they could handle. Total time necessary would have been 5 minutes or so, yet none of them would do this.
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jane
New Member
Posts: 12
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Post by jane on Jul 31, 2005 9:50:30 GMT -5
To this I would add that if we have other symptoms, such as great fatigue, muscle spasms, joint pains, numbness in extremities or dizziness and balance problems, tell the doc about those too - that helps direct them toward a Lyme test. Most docs know of Lyme only as an illness that contributes to arthritis. This was in part how I made by my case, because I have both Morgellons and arthritis along with numbness in toes and fingers (I also developed speech problems and began to slur and reverse words) All or any parts of this package that you might be encountering will help direct them towards Lyme. Once I got that confirmed from Igenex, I was able to gently lead my i.d. to Morgellons. He is now intrigued, interested and wants to help, so it worked. My .02 cents and hope it can help somebody else! Jane
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