Why no post?

[Dannyboy]

I am a member of several forums and always wondered why people join up and never post anything. They never join the conversations.

[jovie]

I think a lot want to, but they are shy.

[die_trying]

hi danny. sorry took me so long hope you are still here, iu couod not read waht you said for the print was too small. i would like to know about you, best prob to private message me and then we can also got to boardkinda looks like you got this, ia ma here for you. i have had it a long time, i am understanding tis.

[jano]

I have had morgellons since 1996, manifesting itself after rollerblading without a helmet and resulting in a traumatic brain injury. The lesion started on the left side of my face. Many doctor visits, blowing me off that I was doing it to my self - much frustration. Then in 2000, I was diagnosed with Kidney Cancer, and my left kidney was removed. So I thought, hey maybe that was it! No such luck. A few months later I was diagnosed with Hypo-Thryoid which is an auto-immune disorder and so I thought maybe that was it. Then, a few months later I had a heart attack. No heart disease, but something blew a little hole in my heart (I still think it had something to do with the morgellons). I have been to many many many doctors including the Mayo. All told me I was doing it to myself, I even had a doctor order a psycological profile. And guess what. I am normal (whatever that is). I have finally found a dermatologist that will at least work with me. I am on Keraflx which seems to be helping. She also shoots cortisone into the lesions which seems to help shrink them. Trust me I am not cured - far from it. The left side of my face looks like a road map. The right side, completely normal. That's my story.

[Franky]

Originally Posted by jano

I have had morgellons since 1996, manifesting itself after rollerblading without a helmet and resulting in a traumatic brain injury. The lesion started on the left side of my face. Many doctor visits, blowing me off that I was doing it to my self - much frustration. Then in 2000, I was diagnosed with Kidney Cancer, and my left kidney was removed. So I thought, hey maybe that was it! No such luck. A few months later I was diagnosed with Hypo-Thryoid which is an auto-immune disorder and so I thought maybe that was it. Then, a few months later I had a heart attack. No heart disease, but something blew a little hole in my heart (I still think it had something to do with the morgellons). I have been to many many many doctors including the Mayo. All told me I was doing it to myself, I even had a doctor order a psycological profile. And guess what. I am normal (whatever that is). I have finally found a dermatologist that will at least work with me. I am on Keraflx which seems to be helping. She also shoots cortisone into the lesions which seems to help shrink them. Trust me I am not cured - far from it. The left side of my face looks like a road map. The right side, completely normal. That's my story.

Wow welcome Jano, thank you for such a informative first post. You seem like you have gone through alot but yet you seem like you still have a good outlook on this. Thank you for sharing your story, and hope you are on your way to recovery. Dont be shy to say hello or ask any questions you might have. Lots of good people here for support.

[jano]

Thanks Franky for the welcome. My goodness - when i read the other messages, it sounds like there have been so many others who have been through alot. Anyways, your welcome means alot and - trust me I'm not shy - so I certainly willl participate in the communication here.

[jovie]

Incredible story Jano, you must be a true fighter. Keep up the good fight, with more people discoverning this, the closer we get to a cure or and treatments.

[oscar]

Jano our hearts go out to you.

[jano]

Gosh! You guys make me want to cry! THANK YOU SO MUCH for the kind words and support. There were many times when I almost gave up, but I have my kids and grandkids who look up to me - and that is what has gotten me through. As I had written somewhere else in here that I think because I've gotten older, what judgemental people might think - I don't care. That has never been the type of person I've ever wanted to be friends with anyways.

When I read what you guys and others have gone through - Man! We truly ALL have been through alot. This message board means alot to me. When I come home from work, I feel like a little kid who has to see if there is any new mail. Thank you!!!

[Dannyboy]

Originally Posted by jano

Gosh! You guys make me want to cry! THANK YOU SO MUCH for the kind words and support. There were many times when I almost gave up, but I have my kids and grandkids who look up to me - and that is what has gotten me through. As I had written somewhere else in here that I think because I've gotten older, what judgemental people might think - I don't care. That has never been the type of person I've ever wanted to be friends with anyways.

When I read what you guys and others have gone through - Man! We truly ALL have been through alot. This message board means alot to me. When I come home from work, I feel like a little kid who has to see if there is any new mail. Thank you!!!

Jano wish you well. Jano you have any idea how you got sick with this?