Body itching

Posted by Retired teacher @specialteacher, Jul 31, 2018

I’ve had almost unbearable itching for over 3 months. Was prescribed hydroxyzine, but it doesn’t seem to help. It started when I was in the ER having a very frightening allergic reaction. I was given an epinephrine iv, and a breathing treatment. My legs started to shake uncontrollably. Then I couldn’t breathe, was given an injection of something at that point. I’m taking benadryl and paxil but don’t know how much longer I can deal with this.

@basslakeview

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?

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Yes, @basslakeview we can start a discussion group on Morgellons. I suggest you start a discussion in the Skin Health group here: https://connect.mayoclinic.org/group/skin-conditions/

Let's start there and grow the group from there. I look forward to working with you on it.

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@barbarn

@basslakeview sure! send a picture!

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I have hundreds of pictures, all very interesting and frightening, but I will show you the two pictures that made me think I have Morgellon. I take pictures if I brush or comb my hair and something falls out or if I am getting bitten but can't see what it is. Many are invisible to the naked eye. I use my phone camera and I HAVE to force flash on all the time, otherwise I can't see them.

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@colleenyoung

Yes, @basslakeview we can start a discussion group on Morgellons. I suggest you start a discussion in the Skin Health group here: https://connect.mayoclinic.org/group/skin-conditions/

Let's start there and grow the group from there. I look forward to working with you on it.

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Thank you so much!! I have included the two photographs that make me think I have Morgellens. I may be wrong. I also think I may have other things going on, too, of which I only know about one (demodex mites which ALL of us have), but I may have other mites or something else, as well. I would give anything to find out!!

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@gardeningjunkie

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.

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Wow!! That IS something to write about.

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@basslakeview

Thank you so much!! I have included the two photographs that make me think I have Morgellens. I may be wrong. I also think I may have other things going on, too, of which I only know about one (demodex mites which ALL of us have), but I may have other mites or something else, as well. I would give anything to find out!!

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I did follow the link to Morgellons and it mentioned that your pustuales acutally make cotton fibers. The black thread like substance sure looks like a cotton thread.

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@gardeningjunkie

I did follow the link to Morgellons and it mentioned that your pustuales acutally make cotton fibers. The black thread like substance sure looks like a cotton thread.

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I should correct it stated that the Morgellons pustules make cotton fibers.

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@basslakeview

Kansas, thank you for the link. I'll check it out. Out of the 12 doctors I've seen only two did a test, only for what they could see with the "naked eye". They took a plug from my scalp where I had lost hair, and they both came back with alopecia. This was early stages of the disease. Since then, no other doctor has done any tests. They tell me I have a psychosis for parasites. To a person suffering, to me, I felt it was a slap in the face, but I just thank them, pay my hard earned money and go to another one. I have taken pictures of my scalp (which is full of lesions), and other parts of my body now after 2+ years and since March have been putting samples of things that have come from my body in separate Ziploc bags. Only one doctor would look at one photo. The rest "don't have time for that."
I am in touch with someone I met on the internet who has written a book and he's trying to help. He has helped a lot of others so I'm encouraged.

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The comments from the doctors stating that you have a psychosis for parasites has me furious. Many people, as well as doctors, label things they don't understand as mental issues. I can't tell you how many told me I was imaging the headache I get just walking by the tire dept in a store or how I feel when exposed to cigarette smoke. My rubber allergy results are in black and white now for others to see, testing as high as the test goes, so much so that the off gassing let alone contact raises my histamine levels. Like you and others I have had symptoms which confused many doctors and their labeling us neurotic is an easy out. You are on the right track to getting this figured out, just like I did (yes, I had physical causes for my symptoms as you do to). I found doctors that believed me and helped me. You have many of us that hope you learn something with your upcoming appointment and I don't want to pressure you but many feel invested in your life now so if you are up to it share what you learn.

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@gardeningjunkie

I should correct it stated that the Morgellons pustules make cotton fibers.

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That was one thing I was thinking when I found that on my couch pillow. Mine doesn't have color in the threads. Another thing is how come I didn't feel that when combing or brushing my hair? No one has been in my condo since May so I know its mine.

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@gardeningjunkie

The comments from the doctors stating that you have a psychosis for parasites has me furious. Many people, as well as doctors, label things they don't understand as mental issues. I can't tell you how many told me I was imaging the headache I get just walking by the tire dept in a store or how I feel when exposed to cigarette smoke. My rubber allergy results are in black and white now for others to see, testing as high as the test goes, so much so that the off gassing let alone contact raises my histamine levels. Like you and others I have had symptoms which confused many doctors and their labeling us neurotic is an easy out. You are on the right track to getting this figured out, just like I did (yes, I had physical causes for my symptoms as you do to). I found doctors that believed me and helped me. You have many of us that hope you learn something with your upcoming appointment and I don't want to pressure you but many feel invested in your life now so if you are up to it share what you learn.

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Sorry to say, I don't have an upcoming appointment except with my family doctor. She doesn't know much about skin disorders or parasites, but she cares, listens, and referred me to my first dermatologist two years ago. I am treating myself right now by following a protocol I read in a book, on how this new friend of mine helped himself with a parasite problem he had for years in the 90s and how he got free of them (his particular nightmare was the Collembolo or sometimes called Springtails). The book is his history with this parasite and how many things he tried to finally figure it out. It took him many many years to find an answer. He has helped many people so I hope I'm on the right track. His book is called, "How To Get Your Life Back from Morgellons and Other Skin Parasites," by Richard Kuhns.
I've just started a special diet this week and will keep you updated. If anyone knows of any scientist who is interested in my case, please let me know. In the meantime, in not giving up, although sometimes I want to.

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Here us a picture I took two nights ago after my last bath of the day. Baths or showers take up my days.

My little dog, Millie, is so very patient. She and I know each other very well. She can tell when I'm so very tired of the biting all over me and I'm getting overwhelmed that she will just come to me and either sit and stare at me or if I'm crying she will start barking until I stop. I pray she doesn't get them, too. She has an appointment with her doctor next week. Hope veterinarians are more attuned to parasites than our MDs.

I get sidetracked. Here's the pictures taken two nights ago.

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@basslakeview

Kansas, thank you for the link. I'll check it out. Out of the 12 doctors I've seen only two did a test, only for what they could see with the "naked eye". They took a plug from my scalp where I had lost hair, and they both came back with alopecia. This was early stages of the disease. Since then, no other doctor has done any tests. They tell me I have a psychosis for parasites. To a person suffering, to me, I felt it was a slap in the face, but I just thank them, pay my hard earned money and go to another one. I have taken pictures of my scalp (which is full of lesions), and other parts of my body now after 2+ years and since March have been putting samples of things that have come from my body in separate Ziploc bags. Only one doctor would look at one photo. The rest "don't have time for that."
I am in touch with someone I met on the internet who has written a book and he's trying to help. He has helped a lot of others so I'm encouraged.

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@basslakeview – so sorry you have spent all these years … isolated and fighting this alone. Early on in my husband's journey we chased the Morgellon's possibility and it seems to me there was a medical school, or some institution that was making Morgellons a priority …. but it will take me awhile to try to find who/where it was.

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Thank you so much. I just found a foundation right here in Texas. It looks as if that is all they do, research on Morgellons. It's the Charles E. Holman Foundation in Austin, Texas. I will write to them and send some of my photographs.

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