Body itching

I posted earlier...my oncology department responded. There are no appointments available. I have standing appt in dec. Same in dermatology, until November. I'd like to end this discussion...I wont be bothering mayo clinic with calls, portal messages , or anything else.

@basslakeview Here is some information from Mayo Clinic about Morgellons disease, related research and coping suggestions.

- Morgellons disease: Managing an unexplained skin condition https://www.mayoclinic.org/morgellons-disease/art-20044996

Have you had a chance to talk to your doctor about your thoughts on Morgellons?

i hope you don't mind me asking about your symptoms. I have dealt with the inside of my skin feeling like it is burning, tingling, and stinging as if tasered and of all the forms of eczema I have this is the worst and most painful symptom. I now am certain it is based upon my allergies because I was given the 5 Day Extended Patch test which identified the agents causing these symptoms and was diagnosed with Allergic Contact Dermatitis, ACD. Finally giving a name to the disease tormenting me, even though chronic, was a relief, I could form a plan and now have it under control. Reading about Morgellons I am terrified for you if you have all the symptoms listed. I can only assume you have been tested for forms of eczema? Still even if you have Morgellons it will be helpful to finally get a name for what is causing your misery, because now you know where to focus your treatment efforts. Your profile page tore at my heart, like you I lost a son who was just short of his 40th birthday. I tell myself he is in a better place and no longer suffering, but the ache is still deep and that was 6 years ago. The loss of loved ones puts the body under stress, it is after that I developed a number of health issues, yet in time found my joyful places. For me it is celebrating life outdoors- just looking at the sky and growing beautiful things healed my mind. I hope you are well enough to have joyful moments and can find a way to celebrate life.

Thank you so much Colleen. No I didn't know what I had until fairly recently after going to 12 board certified medical doctors, 9 of whom were dermatologists. I gave up. I have been suffering with this for over two years.

I found someone online who is helping me, but I would really like to start a communication forum on Morgellons, if that would be possible. What do you think?

Thank you for your kind words. My heart is always heavy, even when I listen to the news about other mothers and fathers who are suffering.
My life and my way of thinking about things has changed immensely.
Morgellons is a very intense illness. I've never experienced anything like it.
Yes, I do find a little peace in the outdoors sometimes and when I think of my precious boy.

God bless you.

One more thing I forgot. My symptoms are like having my whole scalp filled with red ants, not always biting all the time, but 75% of the time I'm itching and miserable. Plus, I'm so afraid of giving it to others. I keep myself isolated. This has been going on for over two years.

I have over two years if photographs, and recently started keeping specimens of things I have found on my body or in my bed upon waking or getting up. Would you like to see a photograph of what i found in my hair?

Hi @basslakeview,

While doing a bit of research online about Morgellons disease, I came across this article which I thought you might be interested in reading:
– History of Morgellons disease: from delusion to definition https://www.dovepress.com/history-of-morgellons-disease-from-delusion-to-definition-peer-reviewed-fulltext-article-CCID

The latest research seems to indicate that Morgellons skin lesions are associated with Lyme disease and other tick-borne illnesses. May I ask if this has been ruled out, @basslakeview

Just wanted to let everyone know, mayo has an opening for me with my oncology nurse next week. Thank you all so much!!

Wonderful news! I am sure you do as most of us do- bring in a list of all your questions and make sure you get answers, even if they say they don't know, to each question. It is confusing and easy to get off track, so before you leave make sure you physically check off each answer. If the doctor doesn't know, ask what our next step will be to figure out your problem. Also one time I forgot to ask one question and had left the office but not the building. I was embarrassed but returned to the office and told the staff I had a question I still needed answered and yes the doctor came out and answered my question. We cannot let our pride stand in the way of getting help.