Morgellons at least we know we have it

[Anna R. Key]

Kaiser's Dr. Selby and the CDC's Dr. Pearson have totally used me and left me for dead. I realize I don't need them to tell me I have Morgellons. As I do research on Tell us your medical story. - WrongDiagnosis.com I find there are so many people that are sick and haven't even heard of Morgellons yet. The stories are just like ours.

Honestly, after all this, the research with Kaiser and the CDC, the Mayo Clinic's Dr. saying it's all in my head, no one following through, I am getting more and more afraid everyday.

Hope everyone else is well.

[sojii]

You were part of the study? What was the process / experience like?

[janedoe]

so forget them then. just concentrate on getting better. only you can do it.

[Anna R. Key]

It was long and frustrating.

First, I was just sick ona dn off for a few years. Never heard of Morgellons. Then I got a letter in the mail from Kaiser, who is my provider in the Bay Area and the CDC. It said that I fit the profile with my symptoms to qualify for a research project. All of the symptoms listed were mine and also the ones that many Dr.s said I didn't have any signs of when lab tests were done.

They had you do an online survey form first. The questions asked were about: sleep loss, itchy skin, does cleaning daily help, do I have psoriasis, do I have hep C. Questions like that. All of them I answered yes.

Then I was given a number, not my Kaiser medical #, but a non-bias number and password code. They did Nuerological testing, blood work, skin biopsies. Everything was sent to the Armed Forces Institute of Pathology and remains the property of the CDC. We haven't seen any results.

Dr Selby from Kaiser and Dr Pearson from the CDC, who I spent a lot of time with don't even call me back anymore.

The report has been done for over a year and still nothing published by the CDC or even sent to any of us for our own personal lab results.

[MeaganM]

Did they ever give you any medication to take? I read somewhere that another guy who was part of the study was given something and they called over the weekend to see if he felt better... and he did temporarily. I was just wondering what it was that they gave him.