morgellons disease

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comfort1660

Phoenix, AZ

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#22
Apr 16, 2011
 
I wonder how many people with Morgellons have had MRSA or the weeping staph infections that sharon e is speaking of? These type of infection suggest that the immune system has had a compromise.

Random thoughts!
rainbobrite36

United States

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#23
Apr 16, 2011
 
I have a history of mrsa (frequent episodes) and I now have a very severe case of Morgellons. I am a 39y/o hispanic female. I reside in the suburbs surrounding Chicago and I am a RN (haven't worked as one for about 4yrs, since I got sick)
comfort1660

Phoenix, AZ

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#24
Apr 17, 2011
 
Hi rainbobrite36,
I also was infected with MRSA, 2006 while working in a nursing home I am colonized with MRSA and was told that I can re-infect myself? I am looking for a common link between people who have previously had MRSA or
weeping staph infections and are now suffering with Morgellons. I was hospitalized last year with (Scabies) I was so upset to have that lable attached to me because I knew I did not have scabies. Let's keep in touch. There may be a link. Have you listed your name on the CDC website?
comfort1660

Phoenix, AZ

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#25
May 9, 2011
 
Anyone losing hair? My knee joints are weak?
Anyone find a doctor yet?
kimmy

United States

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#26
May 12, 2011
 
Oh yeah, comfort... Same hear with one knee. And I did lose hair, a coupla times, but luckily it came back
comfort1660

Phoenix, AZ

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#27
May 12, 2011
 
kimmy, Yes one knee at a time. It started on my right side / went away for about a week / then my left knee went out? My hair is getting so thin you can see my scalp. Every morning I wake it something new.
sharon e

United States

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#29
May 13, 2011
 
I have a long history of inflammation - from psoriasis to psoriatic arthritis to allergies to asthma - as well as osteoarthritis, fibromyalgia, chronic fatigue, and depression. Oh, and some OCD and trichotillomania (hair pulling) to boot. And ADD and sleeping disorders. Then I had thyroid cancer five years ago.

My immune system is hyperactive and hyper-vigilant. I've been on Remicaide for, I believe 5 years in October, which suppresses my entire immune system so I can function. It clears most of my skin surfaces, but it makes me more susceptible to cellulitis and staph infections (or ANY infections).

My hair (on my head) was thinner when the Morgellon's was peaking. It's rebounded a bit since the last major flare. My knees are both in need of replacement, and additional orthopaedic procedures in the future are probable due to joint pain, deterioration, and lack of mobility.

The IBS symptoms are chronic and unpredictable; balance is usually okay but varies with stress, climate, and level of MD involvement; mind/cognitive issues vary constantly. Vision seems to be one of the worst areas, as it varies daily and my glasses prescription changed drastically this year. This is not a change due to aging; I've been wearing glasses about 12 years.

As for the CDC, I am conflicted as I want to help with the epidemiology of the disease, but I also value my privacy and anonymity.

I hope something here or in a previous post is helpful.
comfort1660

Phoenix, AZ

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#30
May 15, 2011
 
Thank you for your post. I guess the one thing that would help is finding a doctor. I am not alone but no one seems to have found anything associated with a doctor. A name , a phone number, anywhere in the USA?
flocka

Reynoldsburg, OH

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#31
Aug 4, 2011
 
Dr Karjoo and Dr. Schaller are two I have heard of. On the fence about karjoo, seems like he could help, Dr Schaller is more for lyme but lyme and morgellons symptoms seem to overlap
Groupmonster

Westminster, CA

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#32
Aug 24, 2011
 
Hi, I live in Portland as well.. Thought I just had a collembola infestation (not to downplay the severity of that in itself) but now I'm seeing fibers.. And I'm growing strange hairs.. My feet are swelling, mental acuity is effed... I'm Starting to lose it, I haven't worked in about a month and all of my money has gone to selective treatment, I can't pay rent and I'm on the brink of being homeless... On top of all that I have absolutely no familial support... This sucks. So now that you've heard my sob story.... Has anyone in Portland found a doctor who treats for morgellon's? Does the city recognize it.. Or do I have to move to Oklahoma and sign up to be a university labrat...:/ haha, let me know! Oh, and If you live in Portland, and you have this thing I also wouldn't be opposed to meeting up/sharing info etc. This sh*t is lonely, yo!:( thanks.
sharon e

United States

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#33
Aug 25, 2011
 

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The only doctor who has given me help and hope is Wayne Bonlie in Timonium, MD (outside Baltimore). He could not possibly treat someone he hasn't seen, so this is a challenge if you are not working. I don't know his insurance status, but I know Medicare rejected a claim I made with his invoice.

I'm pretty positive the study in northern CA is being done by Kaiser Permanente; one has to be on their insurance to qualify. I'm on Medicare and supplemental insurance, so I've never gone beyond knowing the study is going on or being developed. Ginger Savely is an L.P.N. in San Francisco, but she's very expensive and takes no insurance.

UCSF has veen no help other than to ooh and aah and say how rare the disease is. The psychiatrist I saw last year (while in the dermatology clinic) really made me feel it was all delusions of parasitosis. She's no longer there.

You are not crazy, but Morgellon's has a way of making you so miserable you feel that way, making other people think you've lost it, and making you obsessive about the disease while feeling totally vulnerable.
rainbobrite36

United States

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#35
Nov 6, 2011
 

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comfort1660 wrote:
Hi rainbobrite36,
I also was infected with MRSA, 2006 while working in a nursing home I am colonized with MRSA and was told that I can re-infect myself? I am looking for a common link between people who have previously had MRSA or
weeping staph infections and are now suffering with Morgellons. I was hospitalized last year with (Scabies) I was so upset to have that lable attached to me because I knew I did not have scabies. Let's keep in touch. There may be a link. Have you listed your name on the CDC website?
sorry took so long to respond. I broke my hip in may and got severely infected with staph. Last week they just went back in my hip for the 4th time. Its not healing due to my lupus but I also see the morgs inside wound. I'm constantly pulling out clear hairs black specs and god knows what else. I'm very lonely depressed and know real support. Please contact me at susanna14@tmo.blackberry.net
Heather

Portland, OR

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#36
Jan 14, 2012
 
Groupmonster wrote:
Hi, I live in Portland as well.. Has anyone in Portland found a doctor who treats for morgellon's? If you live in Portland, and you have this thing I also wouldn't be opposed to meeting up/sharing info etc. This sh*t is lonely, yo!:( thanks.
Hi. My husband & I are both dealing with Morgellons, here in Portland OR. He has a severe outbreak on his legs now. I self diagnosed Morgellons in 2005, with relatively mild symptoms, intermittent enough to try & ignore, or at least downplay, considering life's other priorities. Short story, lots of stress.
Now that DH has "classic" Morgellons I'm finally able to share research into it, without worrying about seeming crazy. We need local support too.

Since: May 12

Tulare, CA

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#39
May 17, 2012
 

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Morgellons Comes From the Beef You Eat! Here is Scientific Proof!

Austin, TX (PRWEB) May 16, 2012

The controversial illness known as Morgellons disease has a physiological basis, according to a new research report, "Morgellons Disease: A Chemical and Light Microscopic Study,” published in the Journal of Clinical and Experimental Dermatology Research.

Recently, veterinary microbiologist Marianne J. Middelveen from Calgary, Alberta, Canada and internist Raphael B. Stricker, MD published a study documenting similarities between Morgellons disease and a veterinary illness known as bovine digital dermatitis (BDD) that causes lameness, decreased milk production, weight loss, and skin lesions near the hooves of affected cattle. That study revealed that the unusual fibers seen in the animal disease were similar to those seen in and under the skin of people worldwide who suffer from Morgellons disease. A new study confirms that Morgellons disease is not a delusional illness, as some in the medical community maintain.

The latest findings confirmed that fibers from both bovine and human samples were similar in formation at the cellular level and had the chemical and physical properties of keratin. The keratin composition of filaments from humans was confirmed by immunohistological staining with antibodies specific for human keratins. Fibers from human patients were found to be biological in origin and are produced by keratinocytes in epithelial and follicular tissues. The findings are consistent with the 2012 Center for Disease Control publication stating that over 80% of non-biopsy material taken from patients had a protein composition.

“This study puts the final nail in the coffin of delusional disease that these patients have been labeled with,” stated Dr. Stricker.“It proves that Morgellons disease is a physiologic illness. From here on, scientists will be able to move forward in finding a cause and a cure.”

Co-author Stricker, a renowned Morgellons expert, has treated hundreds of people with this disease at his San Francisco, CA-based practice. Principal author, Middelveen, is credited with finding the connection between the two diseases. After noticing that the filaments found on cattle showed striking similarities to those found on Morgellons patients, Middelveen contacted Dr. Stricker. Their joint research identified many common features concerning clinical and epidemiological similarities.

The Charles E. Holman Foundation is a 501(c)(3) nonprofit organization committed to advocacy and philanthropy in the fight against Morgellons Disease. The foundation was named for Charles E. Holman, a pioneer in the fight against Morgellons disease. The Charles E. Holman Foundation is based in Austin, Texas and is lead by Executive Director, Cindy Casey Holman.

For further information or to read the study, visit the website at www.thecehf.org . www.nutrasilver.com
dcc10801

Safety Harbor, FL

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#40
May 18, 2012
 
spammy russ...at it again...smh Study says nothing of morgellons being caused by beef...sensationalist comment from a spammer...peddle your snake oil elsewhere.

Since: May 12

Tulare, CA

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#41
May 19, 2012
 

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Dear dcc,

Reading the post will assist you in understanding it so you do not embarrass yourself like this again with silly comments.
sharon e

United States

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#42
May 20, 2012
 
Dr. Wayne Bonlie is in Timonium, Maryland. Because he's treated me in the past, he'd probably Skype with me and coordinate with my PCP as necessary. I don't know if he can work this out for patients he hasn't met. I have been disappointed with UCSF as they offer ORAP, a Turrette's Syndrome medication for the skin sensations and OCD elements of Morgellon's. However, the medication must be closely monitored; it is a low dose, but it is possible to develop dyskinesia (and not necessarily have it stop if you cease the medicine). So, for now, I see a counselor ~3 times a month, a physician every 2 months (or less), a rheumatologist every 4 weeks, and an endocrinologist every 2 to 3 months. BTW, many people with chronic fatigue syndrome and fibromyalgia also develop Morgellon's. Interestingly, vitamin D3 levels are low in 60% or more of the people with CFS and FM. Correlations may be possible.

Because of the lackluster UCSF interest, my PCP is checking out Oregon Health Care Services and the hospital in Portland as another option for me. I'm more than 350 miles from Portland or San Francisco, so I guess the distance won't matter. I'm also researching Bastyr University/Medical College for Naturopathy to see if there's any help/hope there.

I know it's hard to hang on and to suffer through this, especially when the studies and the dermatologists offer so little insight and compassion. Then, of course, there's the psychiatric community to question our sanity. I challenge anyone to go through this and not think they're losing it (at least sometimes). Find someone who believes in you, cares for you, loves you as a person. Someone will amaze you with their kindness. Be good to yourselves.

P.S. A shaman's directions to me include: aloe vera gel on lesions twice daily; drink 1/4 cup aloe vera juice twice daily; use liver support and cleanse such as dandelion root tea and buplerum or triphala (cleanses). Finally, The one thing I haven't done that he suggested is to wet my body and cover it with clay (sculptor's) once a month. Then, I'm supposed to wrap up in plastic or a damp sheet for an hour or more. Then, I'm supposed to bathe to remove the clay (and any thing else that gets drawn out). I don't see any harm with this, but you'd want to make sure you don't have any infections on your skin before trying the clay.
dcc10801

Safety Harbor, FL

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#43
May 23, 2012
 

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Russell you slip the link for Nutrasilver...your sham product...after the CHEF link...like you're somehow affiliated when you're not...Nutrasilver is snake oil folks and Danser sells it...buyer beware!
dcc10801

Safety Harbor, FL

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#44
May 23, 2012
 

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Oh my bad....meant careman...He goes by so many names it's hard to keep track sometimes :P
Robert

Elizabeth, NJ

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#45
Jul 3, 2012
 
Morgellons, disease is certainly real! Physicians who consider this disease a psychological problem are either covering for the government or crazy themselves. There is much nano research taking place in this country and it looks much like a product of that. The CDC either don't know how to do research and report findings or they just out right lie to cover the numerous law suites which the government would face. Consider this, hundreds and hundreds of thousands of people across the planet are reporting the same symptoms and breaking out in sores that will not heal? Yeah, remember back in 1948 when the USA injected black males with syphilis and refused to threat them. Maybe the physicians themselves, when they become to manifest the symptoms of this nasty research that we are all being exposed to will change their arrogant, and presumptive tune! From what I see the medical community in this country are functioning about at the level of eat and excrete.

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