doubted by doc turned serious by nurse

[losing_everything]

I know I havent been here for awhile the last 3 wks have been hell and when I would have atleast 1 good day Im catching up on laundry grocery and work...UGH. Well 2 wks ago I decided to do like many of u suggested which was enzymes. I used a "lice" enzyme treatment sprayed from head to toe allowed to dry hair first bent over n shower and lathered my hair rubbuing vigioursly I looked down only to c what looked like a long black hair like worm come from "somewhere" as I had only been focusing on my hair. I screamed like a little girl slammed a cup over it & tried to vinish w/out focusin on that! Then washed in hepacleanse (sp) i secured the nasty thing in a tissue then baggie. Called the doc 1st thing n am went n the nurse unwrapped it and looked at it in diff ways then left to get the doc the doc threw his file on the counter & as my luck would happen the damn thing flew off the counter and nowhere to be found assuming he stepped on it or rolled over it n his chair. The good family doc he's been for 7 yrs to us sadi "Oh is that it on your shirt?" I unravled and began to sob he sd "Im just teasing Jess" I believe it was something but why wasnt it in baggie I sd ur nurse took it out. He put me on clindomyacin (sp) and celexra (antidepressant). HE left the room and then his voice turned serious and he sd "Jess I need you to try to find it" but guess what n o luck of course. All this time my kids have long grey marks under their skin, looks like faded pen marks, that begin to fade when enzyme spray applied but turn up somewhere else later. he sd bring them n asap when this happens but w/ my luck again it hasnt UGH. I go to Indianapolis to see an infectious disease doctor on the 15th. Im at a loss and dont know what to say to them or do. I do have a few pics of the "wormy thing" but does it no justice. It almost looked like a feather at 1 end and a square w/ a triangle cut out of the other end. I would really appreciate all of your advice. Do I keep honest or pretend like this will go away if I ignore it even realizing it wont & I know that I look like a crazy person if I continue with this. 1 thing is for sure Im tired and from many of your stories Im only at the begining. Antidepressants where horrid for the 1st few wks but my body is over that now but I do feel myself getting uptight again and I take both my meds plus b12 & c vits everyday! I was taking a 1 a day but it made me puke almost immediately after even when takin by itself so my body didnt like something that was n them.
Thanks for ur advice!!!

[losing_everything]

Im on both for 6 mths as if the last 6 mths of diff stupid antibiotics have helped...

[Digit]

I hear you LE, it's tiring yeah, and scary and hard.
There's all this stuff to learn and do, never mind the emotional adjustments.
Is your enzyme the kind you can add to a bath?

Take heart in having a Doc that is listening to you.
Can you ask him what he thinks would be the best way to tackle the appointment?

[tcmgpt13]

When Venetia first posted this link discussing the organic basis for Morgellons a few months back in a thread she started about it there was, as far as I know, not even any evidence of the abstract being published anywhere. The fact that she even located a copy of it at all is pretty amazing as mention of the abstract on google was so obscure at the time. The other day I found the link to the since published abstract which I shared with Venetia on her most current thread about it. As far as I know there had never been a whole article which has been written or scrubbed from the internet. I assume that since the study was so small (one person) the doctors did not feel it warranted an entire article at least at this time anyway. Mention was made of more study being needed in the abstract. And there is no hurry to copy the abstract as both Venetia the other day and I on her original thread made sure there were extra copies of the abstract posted on both of these threads.

Originally Posted by skylark99

I want you to know first, that I hear your distress. Being confronted with critters in the shower- especially when undressed and feeling vulnerable-- is very upsetting. It is for all of us who have had that experience. You're not alone in being upset. The freak factor of this illness is off the scale for a lot of people, no one really has a map of reference for the things we are experiencing, and most doctors do not believe us when we try to explain what is happening and what we see. Often we never get to the asking for help stage before they are shunting us toward the psychiatrists or the prozac. Sometimes, I think that the lack support and help from the medical community and their blanket dismissal of our accounts of what is happening to us, on top of the trauma of what Morgellons patients experience, adds to the trauma. I am not talking about Post Traumatic Stress Disorder, I am talking about Accumulated Stress Response - trauma 24/7 that causes our physiology and mental state to be in constant high alert mode. Such constant high levels of adrenalin and stress hormones is very damaging to the body and its biochemistry.

Many if not most Morgellons patients are 'labeled' as delusional, unfairly, and often in the absence of investigative assessment by physicians.

Your doctor sounds as if he really does believe you when you say something is going on because you said that he said that he really needed you to find it.

My doctor says things like, I am not going to discuss that with you; you seem anxious, maybe the mental health team could help you with that. Sometimes, he just sits there and looks at me without speaking or crosses his arms over his chest and just looks at me blankly. I swear, when I finally figure out what is going on, I will sue him...

Maybe you have a better doctor than most, if he indicates to you that he wants to see what you saw. Perhaps in time you will have another specimen to show him. Too, there is a new article that he might be interested in reading which gives some evidence that this illness is not psychological, but has physical origins, possibly in the GI tract. The link is below.

While I am on the topic of diagnoses of delusions of parasitosis: NB DOP is a subset of schizophrenia, and as far as I am aware no people with Morgellons have a mental health diagnosis of schizophrenia.

Sorry, the link to the original document was 'scrubbed' and is no longer the full article.

But I copied the whole thing and post it below.

Alternatively, you can go here and print it out with the AJG heading on the top. Scroll down to Article number 709. But hurry before it's gone from the net.
American Journal of Gastroenterology - Clinical Vignettes - Small Intestine/Unclassified


The American Journal of Gastroenterology (2009) 104:S257–S287; doi:10.1038/ajg.2009.492_10


709 Small Bowel Capsule Findings Suggest that Morgellon's Disease has an Organic Basis and is Not Psychosomatic in Origin

Daniel Chao, MD, David Cave, MD, PhD. University of Massachusetts Medical Center, Worcester, MA.

Purpose: Background: Morgellon's disease is a poorly described, severe ulcerative skin condition that histologically is consistent with dermatitis artefacta. It has therefore been dismissed as a psychosomatic disorder, much as was the case with ulcerative colitis in the period from 1930 to 1960. We present the first case of a patient with Morgellon's syndrome who had additional findings suggesting that it is a systemic disease.

Case Report: A 65 year old white female presents to us with an unexplained iron deficiency anemia. She had a history of systemic lupus and a 2 year history of severe skin ulcerations. The ulcers contained fragments of black material. She had been seen by multiple specialists who told her that the lesions were self-inflicted and that she should get psychiatric care. Physical exam was of note for numerous papules with erythematous, ulcerated centers measuring 2 to 12 mm located on the trunk, back, upper and lower limbs and outer ear canal. The ulcers were notable for sharply angulated corners and clearly demarcated edges. She had extensive scarring on her arms and legs. Her labs were notable for a hemoglobin of 9.1 g/dL with MCV 83.3, serum albumin 3.4, and ESR 32. ANA was negative. She had recently completed a course of intravenous iron. A video capsule was performed. This showed denuded villous patches in the jejunem, which were unusual for their sharply angulated appearance, similar to her skin lesions. Small bowel biopsies were normal. Skin biopsy showed hemorrhage and non-specific inflammation. Histology of the black debris from her ulcers suggested vegetable matter. Repeat capsule examination 6 months later showed spontaneous resolution of the denuded patches. Occlusion treatment on one limb led to some improvement.

Discussion: This patient demonstrated cutaneous ulceration consistent with Morgellon's syndrome, but she had co-existing evidence for systemic disease with iron deficiency, low albumin and small bowel villous changes consistent with a mild enteritis. This is the first time that evidence for systemic disease has been demonstrated in association with what has previously been considered a disorder limited to the skin. Further investigations are warranted in a larger patient population.

http://www.acg.gi.org/acgmeetings/pd...limProgram.pdf

[tcmgpt13]

Here's what a clinical vignette is:

vignettes

What is a clinical vignette?

A clinical vignette is a concise presentation of an interesting or challenging patient encounter. The goal of the presentation is to highlight the unique aspect of the patient interaction that stimulated an interesting learning issue. The challenge may have come in the diagnosis, management, understanding of underlying pathophysiology, or personal interaction with the patient.

What makes a good clinical vignette?

Keep two things in mind:

A common patient presentation that turns out to be an unusual disease/problem
OR
An uncommon patient presentation that turns out to be a common (or unusual) disease/problem.

Extremely complicated or very rare problems are interesting to discuss, however they are not always the best for vignettes. One of the goals, and especially as a student, is for your audience to have learned something new.

Why do this?

Developing and presenting a clinical vignette is a great way to research and fully understand interesting or challenging patient problems. It gives you an opportunity to share the excitement of medicine with other students and physicians and gives you the unique position of being a “mini-expert” on the topic.


Note abstract 709 (about Morgellons) is listed under clinical vignettes on this page. It is copied from the Journal Of American Gastroenterology,. Notice too that this information is actually posted on nature.com You see there is no article posted and then withdrawn on nature.com.

A vignette by definition is a short presentation. There has not been a written article. If there had been and it had been withdrawn it would have been mentioned under the abstract. Notice that the very first vignette on this page says that:

693

ABSTRACT WITHDRAWN

Also notice that it was not mentioned that an article had been withdrawn and only an abstract left when you get to abstract 709. This is because there was never a written article and therefore no article was withdrawn. At least not yet. There may never be an article written about one case as I imagine the doctors view this as a vignette only presently. Interesting yes, but needs more study.

This is not being pedantic, this is presenting factual information.

American Journal of Gastroenterology - Clinical Vignettes - Small Intestine/Unclassified

Originally Posted by skylark99

What I meant was that the original article (or paper, if you will) was published in it's entirety on the AJG dot org's webpage.
It has now been replaced with a brief abstract of only a few short paragraphs.
The original article, in full, is now only available on the nature(dot)com's website.
But it doesn't matter, because it's only pedantic.

[posey]

What enzyme spray are any of you using on your body? I must have missed this in the almost 3 years I have been here.

[tcmgpt13]

Kleen green, it gets mentioned all the time lately, but there's also eco-vie and bug arrest. It depends entirely on who you ask.

[losing_everything]

Originally Posted by posey

What enzyme spray are any of you using on your body? I must have missed this in the almost 3 years I have been here.

I posted everything I’ve used in a thread under Morgellons treatment suggestions titled "I think I did it!" the spray is in the pets dept at Wal-Mart in the cats section at our local store citrus kleen or something like that safe for pets and humans used it on myself and children when found it was 3$ a 32oz bottle but the 1st 1 that showed promising on my body was a nix or lice pesticide free peppermint spray.

[losing_everything]

And yes you're right its very stressful especially when u no longer feel attractive and that wears on a marriage thats 1 of the biggest issues with me he says he doesnt feel that way but of course he does hes just trying to be supportive and understanding. And I just dont understand that. and can anyone tell me why me and the kids have all the symptoms and he has none?! does he have "immunity"? hes never had chic pox wisdom teeth and rarely gets a cold! so wierd to me.

[lamb]

Go with the Pet Stuff that you have... I buy "Nature's Miracle" at Petco... it's a urine/stain enzyme. Put some peppermint oil in it or better yet safesolutions.com sells a cleaner called tweetmint which is awesome!

it's expensive but you only need a little bit diluted in water to clean with. Floors, carpets etc.

Mix a few drops with the enzyme and spray your dryer drum and filter with every load.

You can even use it personally.. I only do that when I am desperate.. it stops the creeps.

best wishes.

No. I do not work for or promote this stuff... just telling what helps me.

I am sure I'll be shot at 20 paces in a minute or so.