So, I read the below case definition of Morgellon's disease.
I am left with a few conclusions.
1) I have morgellons- I have the white fibers which grow vertically
2) I have most of the signs and syptoms of Morgellon's disease, including slow to heal skin lessions.
3) However, I don't really have Morgellon's because, Morgellon's doesn't really exist.
4) Morgellon's disease is simply a variant of ACA, the rash of Lyme commonly found in European Lyme-stage 3
5) why would I say such a thing? I read the case definition, and the only thing I don't fit are the spontaneously appearing ulcerating lessions and the belief that bugs are crawling on my skin(note that I have this sensation, but clearly, there are no bugs, I am simply experiencing a well known feature of Lyme Disease- NUEROPATHY!)
6) I also have the itching thing, and this is where the ACA varient thing comes in. They are pimple like, I agree, but they more resemble poisen ivy like lessions- they also feel great after placed in warm water, similar to poisen ivy, but these lessions appear without contact to poisenous ivy. They are bothersome yes, but we don't have bugs crawling out of our ears.
7) the visual thing- uhhh temporal lobe blood flow reduction, kinda well known in Lyme encephalopathy. I have this thing too.
8) I'm not dissing the Morgellon's thing, I think its great, I just also think its Lyme Disease, rather than a separate disease or even a co-infection.
Morgellons is just a variant of ACA, and I believe most people with Morgellon's will find they DO have a very mild form of severe ACA present on their feet and hands.
Are there differences between ACA and Morgellons, sure, but are there enough to regard them as separate skin diseases from Borreliosis. My opinion is no until more research comes in.
MRF
Morgellons Research Foundation A nonprofit organization P.O. Box 16576 Surfside Beach, SC 29587
To: Centers for Disease Control and Prevention (CDC) From: Morgellons Research Foundation Date: February 14, 2006
Subject: CASE DEFINITION - MORGELLONS DISEASE (DRAFT)
The following case definition of Morgellons disease has been developed by physicians on the medical advisory board of the Morgellons Research Foundation. This case definition is a preliminary and evolving document, now updated for review by the Centers for Disease Control and Prevention (CDC). This document will be refined as further information becomes available and as members of the medical advisory board deem necessary.
The Following Six Signs or Symptoms Are The Basis of Morgellons Disease
1. Skin lesions, both spontaneously appearing and self-generated, with intense itching. The former may initially appear as ``urticarial-like'', or as ``pimple-like'' with or without a white center. The latter appear as linear or ``picking'' excoriations. Even when not self-generated, lesions often progress to open wounds that heal abnormally and usually incompletely. (e.g., heal very slowly with discolored epidermis or seal over with a thick gelatinous outer layer.)
2. Crawling sensations, both within and on the skin surface. Often conceptualized by the patient as ``bugs moving, stinging or biting'' intermittently. Besides the general dermis, may also involve the scalp, nares, ear canal, and body hair or hair follicles. The sensations are at times related to the presence of easily seen insects, arthropods, and other human and non-human associated parasites that require serious attention from the observing clinician.
3. Fatigue significant enough to interfere with the activities for daily living.
4. Cognitive difficulties, including measurable short term memory and attention deficit, as well as difficulty processing thoughts correctly. Described by patients as "brain fog".
5. Behavioral effects are common in many patients. Many have been or will be diagnosed as Attention Deficit Disorder, Attention Deficit Hyperactivity Disorder, Bipolar Disorder, or Obsessive-Compulsive Disorder. A minority do not show this pattern. Almost all, if previously seen by well-read physicians without prolonged observation, will have been labeled as ``Delusional Parasitosis''. Temporal relationship to skin lesion onset is not known.
6.``Fibers'' are reported in and on skin lesions. They are generally described by patients as white, but clinicians also report seeing blue, green, red, and black fibers, that fluoresce when viewed under ultraviolet light (Wood's lamp). Objects described as ``granules'', similar in size and shape to sand grains, can occasionally be removed from either broken or intact skin by physicians, but are commonly reported by patients. Patients report seeing black ``specks'' or ``dots'' on or in their skin, as well as unusual 1-3 mm ``fuzzballs'' both in their lesions and on (or falling from) intact skin.
OTHER COMMONLY REPORTED SYMPTOMS AND SIGNS
1. Change in visual acuity.
2. Numerous neurological findings. A variety of neurological symptoms have been reported. Some patients have been diagnosed with Amyotrophic Lateral Sclerosis, Multiple Sclerosis, and other well-known and recognized disorders, while others display significant symptoms not falling into any well-defined neurological category.
3. Gastrointestinal symptoms, which may include dyspepsia, gastroesophageal reflux, and/or changes in bowel habits often similar to Irritable Bowel Syndrome.
4. Neuropsychiatric symptoms and signs, ranging from mood or personality changes to diagnosed disorders including Attention Deficit Disorder, Bipolar Disorder, Obsessive Compulsive Disorder and occasionally frank psychosis. Temporal relationship to skin lesion onset is not known
5. Acute changes in skin texture and pigment. The skin is variously thickened and thinned, with an irregular texture and irregular hyperpigmentation pattern. The changes resemble age associated sun-exposure skin damage, but typically appear acutely
6. Skin examination often reveals excoriated and/or crusted lesions which, on examination with lighted magnification, are seen to have inclusions of variously colored (white, blue, black, or red) fibers. Skin examination may also reveal multiple hyper-pigmented macules, and an increase of what appears to be villous hair on arms and face.
7. Arthralgias are reported by many patients.
8. Associated diagnoses which have been commonly reported in this patient population include Borreliosis (better known as Lyme Disease), Fibromyalgia, and Chronic Fatigue Syndrome.
OTHER COMMONLY REPORTED OBSERVATIONS
1. Most patients will have sought care from multiple medical care providers. A large number will have been diagnosed with Delusional Parasitosis likely because of the juxtaposition of unexplained skin lesions and sensations and psychiatric overlay. Unfortunately, almost none will have received an appropriate diagnostic physical examination (particularly a microscopic or biopsy examination of lesions), but will have been diagnosed by history alone with grossly incomplete observation.
2. Most of these patients feel abandoned by the traditional medical care system and have sought alternative care providers or have self medicated, seriously compounding an already difficult medical situation
LABORATORY AND OTHER DIAGNOSTIC EVALUATION
To date, there have been no formal laboratory or imaging studies done in this patient group. There are some reasonably consistent clinical findings, however, that need further examination, in controlled studies, to be corroborated or refuted.
REVIEWED BY:
William T. Harvey, MD, MPH Michael Ledtke, MD Ginger Savely, RN, FNP-C Raphael B. Stricker, MD Gregory V. Smith, MD, FAAP
Medical Advisory Board Morgellons Research Foundation
Posted by Mo (Member # 2863) on :
Up
Posted by lpkayak (Member # 5230) on :
just wondering...has anyone had a morgellons type condition that ended up being mrsa?
Posted by MagicAcorn (Member # 8786) on :
mrsa? = Staphylococcus aureus? Isn't that flesh eating disease? Wouldn't they present very differently in a clinical setting?
Anyway, I sure hope they are not related because that would be an awful turn of events.
Posted by daniella (Member # 6753) on :
that symptom list sounds like lyme to me!...
Posted by Marnie (Member # 773) on :
There is more than one pathogen that can follow the glycoysis-cholesterol pathways.
Some pathogens lock directly onto our DNA and trigger a slew of problems (DNA damage isn't good.). Bb and salmonella are 2. WHERE they lock on...in what cells...where...is important...defense-wise.
We have a very immediate response to pathogens that are the result of food poisoning because we HAVE to be able to absorb and make nutrients to live. These pose an IMMEDIATE threat to life.
Symptoms will be identical (or very similar) if pathogens share the same pathways.
Posted by Diana123 (Member # 9534) on :
quote:Originally posted by lpkayak: just wondering...has anyone had a morgellons type condition that ended up being mrsa?
I recall a couple of people on the Lymebusters / Morgellons message board saying they had been hospitalized for MRSA.
I don't think it was definitely connected to Morgellons, but everybody on the Morgellons board goes through the stage where they present their experiences - trying to find a common denominator. (Other than the basic common denominator of not being believed by doctors - that seemed to be a common starting point for looking for answers)
In the past few months, since Ginger Savely's study was published with the American Journal of Clinical Dermatology (79 out of 80 of her Morgellons patients were positive for Lyme borrelia), more of the Morgellons people have been looking into the Lyme aspect and those who can do so have been getting tested.
Not all have tested positive, but that could be due to a variety of factors. Clinically, many seem to have Lyme.
Some have tested positive, at least one even by CDC standards. Under the care of LLMD's, symptoms are easing up. Some of the meds, like Rifampin (sp?) are tough going with the herxes.