In their recent paper, Stricker and Savely said:
“[…] the apparent response to antibiotic therapy supports the concept that Morgellons disease may be triggered by an infectious process”
Morgellons is not a recognized disease, it’s a list of symptoms. Some people have self-diagnosed with some those symptoms, and some doctors (a very small number) think that this means that the list of symptoms is indicative of a distinct disease. The above statement is typical of the reasoning they use.
So if “Morgellons” is not a distinct disease caused by an infectious agent, then why would antibiotics help people who have some of this list of symptoms? Let’s look at the symptoms again, from the above paper:
# Skin lesions accompanied by intense itching
# Crawling sensations on and under the skin, often compared to insects moving, stinging or biting (cutaneous dysesthesia)
# Fibers, which can be white, blue, red or black, in and on the lesions
# Fatigue significant enough to interfere with daily activity
# Musculoskeletal pain
# Inability to concentrate and difficulty with short-term memory
# Behavioral changes
Fibers, we have dealt with before. Nobody has shown they are anything other than normal environmental contaminants (hair, lint, clothing fibers, paper fibers). After five years of looking at them, it seems fairly clear that this is all they are. No new evidence is presented, so let’s look at the other symptoms.
Musculoskeletal pain, intense itching and crawling sensations are obviously going to seriously interfere with your sleep (disrupted sleep is another commonly listed Morgellons symptom). Sleep deprivation leads to fatigue, difficultly concentrating, and behavioral changes. Sleep deprivation can cause other problems, even leading to diabetes.
So what we might have is people with intense itching and crawling sensations, and other pain, that keeps them awake at night, so they develop “brain fog”.
So where do antibiotics fit in?
Well, for one things, the cause of the itching/crawling might in fact be an infection such as staph or folliculitis, which is treated by antibiotics. But an often overlooked property of many antibiotics is that they are also anti-inflammatory. They can also, apparently, “Inhibit Staphylococcal Exotoxin-Induced Cytokines and Chemokines“, which is interesting since the MRF states that elevated cytokines is a common laboratory abnormality for Morgellons. If they hence judge reduced cytokines to be an indicator that antibiotics are addressing an infectious source of “Morgellons”, then they might be jumping to conclusions.
The point here is that it is entirely possible the antibiotics provide purely symptomatic relief to people who have some of the symptoms on the Morgellons list. Morgellons patients and Morgellons doctors almost invariably note that the relief ends when the antibiotic treatment stops. What if these extreme doses of antibiotics are not actually addressing some underlying infectious agent, but instead are simply suppressing the symptoms via their mild anti-inflammatory effects? If this is so, then those doctors provide their patients a grave disservice.
While its true that some antibiotics — primarily macrolides and tetracycline-based drugs — have been shown to have mild anti-inflammatory effects, it seems far more likely that any benefits in this population are simply due to a placebo effect.
Rowley. I’m sure placebo plays a large part. But partly what I’m trying to do here is point out the danger of simple generalizations. Saying that antibiotics is purely a placebo effect is similar to saying that DP is purely psychiatric. There are physical factors involved here, and they need to be included in any explanation of the “Morgellons” phenomenon.
The problem is that its easy for folks’ terminology to become quite imprecise — let’s explore the distinction between hallucination and delusion.
I think relatively few Morgellon’s sufferers actually hallucinate — ie see things that are not present. I think many (most?) are delusional — and that depends on how reflective the “on line” population is of the over all Morgellon’s population. When I say delusion, I mean an unshakable misinterpretation of something that actually exists. For example, a belief that a skin lesion is caused by an insect or nano-machine, a belief impervious to objective evidence to the contrary.
Of course, I would not consider a patient who developed a skin lesion that itched persistently and who reached the conclusion that it was due to an insect delusional immediately. On the face of it, its not illogical. However, if that patient clung to that belief even after being presented with compelling evidence that no infestation was present, I would classify them as delusional. I think that hyper-extended conspiracy theories — ie the government is in cahoots with Big Pharma to give everyone Morgellons — is a good marker for delusional thinking.
Interestingly, delusional thinking can be highly compartmentalized. Usually those who hallucinate have a much more pervasive problem. Its possible for someone with delusions to be able to apply impeccable logic to problems outside the scope of their delusion — logic which if applied to their delusion would surely defeat it. Its fascinating really.
That is indeed the problem here, and a problem that I struggle with constantly. One word that people have problems with is “formication”, which if you look up on dictionary.com you get:
Which is a very unfortunate description, as it’s essentially classifying a sensation as a delusion. This means that many people who have the “crawling sensations” of Morgellons (due to diabetes, drug side effects, menopause or whatever), are highly resistent to having it described as “formication” and many avoid an accurate description of their symptoms as “feels like insects crawling on my skin”, as they think this will make the doctor think they are crazy. In fact, the sensation of insects crawling on the skin is a perfectly normal physical symptom, no different from a headache.
Somehow though, the Morgellons community has promoted the idea that if you tell your doctor you feel like insects are crawling under your skin, then the doctor will refuse to examine you, and pronounce you insane. That’s just totally incorrect.
Antibiotics actions in Morgellons are not likely to be a placebo effect. Please see the Nature article on how antibiotics protect from nerve damage. There are many properties of antibiotics that we can only guess because they have not been tested for these properties. To label what we don’t know about a thing to be “all in someone’s head” is irresponsible and impresise medicine. Unfortunately, this is the medicine doctors do most. As to the crawling sensations, I have seen the organisms myself and they are most certainly not a delusion. They dig back into your skin if you get live ones, and will attack from a pile of trash left to sit for a week. They move very fast. I have dug them out of sores and shown them to people. One of my friends that has them has never seen any, he just gets the leisons. I have immune system problems that are not diagnosed, even though I have had them all my life. Doctores can’t and haven’t explained why I never get fevers(even with flu or pneumonia) and why I am at a fairly constant 96 degree body temperature regardless of what is going on. My thyroid and other tests are all normal. I would also like to point out that Chlamydia tests are no good. I have a friend that has given Chlamydia to four girlfriends over the course of several years, and has never tested positive. Better tests for a lot of things are necessary. To rely on them entirely is not to recognize their limits. Also please note that doctors have historically not recognized diseases or their nature. Most people in medicne who find someting new have to go through years of ridicule from the established medical body before their findings are validated. This is still true today.
Casey said:
That is a false statement. Doctors are DIAGNOSING, not “labeling”, and it is not “the medicine doctors do most”, just because your, and other patients’, particular difficulties, perceive it that way, as well as having been further led into believing it’s true through the instigators behind “morgellons disease”.
And, this is just what Rowley and Michael were discussing, Casey. You said:
I think that most DOP patients have visual hallucinations. I know that I did, and Tall Cotton did, and a large number of the people on “morgellons disease” message boards do. It’s hard when the mind does that to a person, because we generally trust our senses. Doctors are diagnosing correctly when a person believes such things, and they’re the ones to be trusted on that. If you could learn about the brain, and skin anatomy, you might be able to get your mind in a better place, do what the doctor recommends, and get well.
(I know, I should just save my breath.)
mellissa J — there is hope…
in July 2006 my CD57 values from “labcorp” were 33 in August
2007, they were 48. The numerical increase and a noticeable
increase in health was due to combination antibiotics my
LLMD prescribed long-term for treating Lyme disease.
Now that I’m on hi-dose doxycycline and rifampin, and after
doing flagyl for about 5 mos continuously, the CD57 numbers
“feel” even higher still … and I’ll find out when i test
again in 2008… the IDSA and the CDC are lying when they
say Lyme is “hard to catch, easy to cure.” Many tens of
thousands of patients opine otherwise, and no, it’s not
post-lyme syndrome, or any of that poppycock… at least the
idiots making the recommendations of death for lyme at the
IDSA are getting sued by the Attorney General….
A lot of lies about lyme are being printed here, and
alongside bias against morgellons patients, there exists an
equal and wrongheaded bias against chronic lyme as
well… This has been going on in the press and the internet
for decades, for example the incorrect assertions regarding
licensing at Igenex that have been repeated by people
here… even though they’ve been proven false…. Yet the
New York Times hasn’t printed a retraction despite
complaints.
here’s something I’ve been writing up about Lyme for y’all:
———————–
Since we’re talking lyme and some here are parroting the
IDSA recommendations on Lyme that are guaranteed to leave
all chronic lyme and morgellons patients untreated. Perhaps
a better understanding of “the most controversial disease in
the history of medicine” is needed before jumping to
conclusions.
Please note the following article from your IDSA brethren
recently published in the New England Journal of Medicine
http://content.nejm.org/cgi/reprint/357/14/1422.pdf “A
Critical Appraisal of ‘Chronic Lyme Disease'”
ILADS response is that this is medical and scientific fraud:
http://ilads.org/press_10_07.html — “ILADS Members Question
Motives of New England Journal of Medicine Article on Lyme
Disease: Treatment Article in New England Journal of
Medicine Fails to Disclose Conflicts of Interest of
Overlapping Panel Members”
This is just another instance of the ILADS vs IDSA fight —
http://en.wikipedia.org/wiki/Lyme_disease_controversy —
directy related to the antitrust suit against the IDSA,
launched by the Connecticut Attorney General (
http://www.the-scientist.com/news/home/49605/
http://www.lymenews.org/b_Courant_-_Lyme_disease_guidelines_focus_of_antitrust_probe.pdf
). The following letter to John Corzine (Chairman Health and
Human Services Committee) outlines the serrious issues with
IDSA’s approach to Lyme disease:
http://ilads.org/press_09_07.html
Lyme Literate Medical Doctors (LLMDs) exist and can do
business; government chiefs are “on alert” to Lyme disease;
laws are being passed, even in California, which grant
people access to ILADS diagnostic and treatment guidelines
as “medically viable.” (
http://info.sen.ca.gov/pub/07-08/bill/sen/sb_0751-0800/sb_772_bill_20070223_introduced.pdf
)
In contrast to the IDSA recommendations and the recent NEJM
article, ILADS offers an opposing opinion in Expert Review
of Anti-infective Therapy, October 2007, Vol. 5, No. 5,
Pages 759-762. “Lyme disease: a turning point” by Raphael B
Stricker and Lorraine Johnson —
http://www.future-drugs.com/doi/pdf/10.1586/14787210.5.5.759
— summarizes “The lesson here is that the medical community
should keep an open mind regarding treatment options for
Lyme disease and not jump to conclusions based on a solitary
study with poor generalizability.”
Another article by Stricker gives more detail on the
significant scientific and medical “evidence” ignored by the
NEJM and IDSA authors in their fraudulent yet supposedly
“evidence based” conclusions. “Counterpoint: Long-Term
Antibiotic Therapy Improves Persistent Symptoms Associated
with Lyme Disease”, Clinical Infectious Diseases, volume 45
(2007), pages 149-157
http://ilads.org/files/publications_stricker_06_2007.pdf
Please explain how blanket statements like “one month of
antibiotics” is sufficient based on all the research into
borrelia summarized in the article, and purposefully ignored
by the IDSA in making their recommendations??
The reason is simple: The NEJM article is written by the
same criminals that did the IDSA recommendations, after
ignoring most of the research that contradicts their
HMO/insurance-inspired viewpoint to ignore “chronic lyme”
and ignore all the research (thousands of articles) that
indicate borrelia have a persistent form (cyst) and an
L-form (intracellular,… bacteria strips off it’s cell wall
and lives inside other cells). and natural genetic
variation over-time in borrelial outer surface protein to
evade immune detection. The IDSA says “lyme is hard to
catch, easy to cure.” ILADS says the opposite.
Once again and par-for-the-course with the IDSA and CDC —
the NEJM article trumpets scientific fraud: they claim, one
month of antibiotics is all that is justified for lyme
treatment, and anything after that is “post lyme syndrome”
which should be treated with psychotropics. They’ve setup a
testing process that’ll generate 100% guaranteed
false-negative tests for anybody infected outside of the
east coast (different borrelial genetics in different
regions… there’s over 300 variants worldwide but the tests
they give only check for one or two). There’s published
articles indicating that birds are carrying these ticks to
places they shouldn’t be, and spreading the disease into the
animal, then human population.
Most importantly, the authors of the article are being sued
for antitrust by the Connecticut Attorney General. yet, they
don’t disclose this in their “disclosure”, which is also
fraudulent.
It’s the fraud from IDSA and the lyme bioweapon coverup
folks (including some of the authors of the NEJM article)
that is preventing many people from getting diagnosed or
treated for both Lyme and Morgellons… HMO’s like Kaiser
are very happy for the IDSA guidelines because it allows
them to ignore patents… it’s the reason why anybody with
Lyme and Morgellons will not be able to get insurance to
cover treatment and forces people to go to lyme specialists
— none of them are getting better on the IDSA plan, and
many of them are getting significantly worse… including
paralysis and death.
Some of these deaths are by suicide by those medically
abandoned by the very agencies (the CDC ultimately) that are
entrusted with the public health. This is of course the
chosen “final solution” that you lot have for us morgellons
sufferers as well (
http://lymebusters.proboards39.com/index.cgi?board=support&action=display&thread=1194068968&page=1#1194558231
) , now that it’s been deemed ethical to treat lyme patients
with equal contempt — to make us get heinously fat&diabetic
because the medication forced on us is the bluntest of
psychotropic medicines… or to refuse treatment entirely
making a morgellons patients life like that of a tuskegee
syphillis victim (
http://en.wikipedia.org/wiki/Tuskegee_Study_of_Untreated_Syphilis_in_the_Negro_Male
) … it’s a cruel choice to only give patients the choice
of a blunt tool like a chemical lobotomy, or to die from
nontreatment (very slowly and pathetically). Thanks, but i
think i’ll stick with the totally safe and totally curative
doxycycline my LLMD prescribed and/or the “combined
antiobiotic protocol” from http://cpnhelp.org . Such doctors
are the third way out, forcing people to pay not only for
insurance, but also out of pocket for “non approved”
treatment like Lyme disease.
Once again, Morgellonswatch, please note that Morgellons is
a combination of infectious conditions or immune deficiency
allowing onset of opportunistic parastic infections. All
morgellons patients apparently test positive for
chronic/recurrent form of chlamydia pneumoniae and many test
positive for borrelia, HHV-6, elevated EBV-titers, and
mycoplasmas. That’s 5-rule-outs before any DOP diagnosis
right there. Which is related to the impossibility of
getting these tests from an HMO. It’s easy to give out pills
that’ll eventially force the person to disable out of work
and not be able to afford the insurance (passing the buck to
the federal govt). It’s much harder to treat for a disease,
and be accountable for that treatment as the person attempts
to stay employed in a job that can secure the insurance
needed to pay for the treatment.
In a world where doctors weren’t lazy “guideline followers”,
once evidence of infection is made clear through laboratory
tests, traditional “evidence-based” medicine techniques are
used to guide practitioners through treatment options.
Thus, treatment of morgellons is a “shotgun” of
antiparasitics/antungal/antibotic/antiviral because the
initial tick-byte (or blackfly?) is itself a soup of
infectious hitchhikers
… http://www.ncbi.nlm.nih.gov/sites/entrez?cmd=Retrieve&db=pubmed&dopt=AbstractPlus&list_uids=17401487
“Due to etiological and laboratory particularities it is
named LD-like syndrome or LD imitator syndrome. The
condition is considered to be a zoonosis transmitted by
ticks of the genus Amblyomma, possibly caused by interaction
of multiple fastidious microorganisms originating a protean
clinical picture, including neurological, osteoarticular and
erythema migrans-like lesions. When peripheral blood of
patients with LD-like syndrome is viewed under a dark-field
microscope, mobile uncultivable spirochete-like bacteria are
observed. [ …] revealed spirochetes not belonging to the
genera Borrelia, Leptospira or Treponema. Surprisingly,
co-infection with microorganisms resembling Mycoplasma and
Chlamydia was observed on one occasion by electron
microscopy analysis. We discuss here the possible existence
of a new tick-borne disease in Brazil imitating LD, except
for a higher frequency of recurrence episodes observed along
prolonged clinical follow-up.”
And why does it bother you lot so, that we’re even given a
choice between
http://en.wikipedia.org/wiki/Pimozide#Side-effects and
http://en.wikipedia.org/wiki/Doxycycline#Cautions_and_side_effects
Shouldn’t we allow the free flow of information and let the
people and market decide? What’s the point of amateurs
“debunking” something that even our top scientists are
baffled by?
my neighbor had severe lesions for over two years. conventional medicine was unable to identify or treat them. he went to every doctor recommended by the medical establishment. when all else failed i did a study. he had ALL the symptoms of morgellons. right down to the fibrous”worms” that emitted from the lesions. when he presented some of them to his doctors they just shrugged and threw them in the trashcan.
i saw where some people claimed colloidal silver worked to treat the problem. i taught him how to make his own approx. after spraying the affected areas with it a few times daily and taking approx. 1 oz. internally before bedtime and first thing in the morning for 60 days the problem is GONE!
Steve,
How do you propose that colloidal silver “kills” the “fibrous worms”?
This is why antibiotics help with morgellons .. how do you plan on denying the Fallon study, along with your quixotic denialism of lyme, morgellons, parasites, etc.
http://www.ilads.org/files/Columbia_Study_Press_Release.pdf
Columbia University Medical Center Leads First Placebo-Controlled
Study of Cognitive Impairment Due to Chronic Lyme Disease
Findings Show Severe Physical Dysfunction Among Patients & Benefit of
Repeat IV Antibiotic Therapy to Provide Long-Term Symptom Relief
NEW YORK – Findings from the first placebo-controlled study of chronic cognitive impairment after
treated Lyme disease (also known as chronic Lyme encephalopathy) demonstrate that patients report
moderate cognitive impairment, physical dysfunction comparable to patients with congestive heart
failure, and fatigue comparable to patients with multiple sclerosis. In the study, repeated intravenous
(IV) antibiotic therapy was shown to be effective in treating cognitive dysfunction and the debilitating
pain, fatigue and physical dysfunction associated with this disease.
The study, titled “A Randomized, Placebo-Controlled Trial of Repeated IV Antibiotic Therapy for
Lyme Encephalopathy,” will be published on-line by the journal Neurology on Oct. 10, 2007. The
study was led by Principal Investigator Brian Fallon, M.D., M.P.H., director of the recently established
Lyme and Tick-borne Disease Research Center at Columbia University Medical Center
(http://www.cumc.columbia.edu/news/press_releases/fallon_lyme_center.html). The research was
conducted jointly at the Columbia University Medical Center and New York State Psychiatric Institute
and was funded by the National Institute of Neurological Disorders and Stroke (NINDS).
“These findings replicate results from a prior placebo-controlled trial of post-Lyme fatigue, which
found positive treatment results from repeated antibiotic therapy. They also replicate the degree of
physical impairment results demonstrated in another prior study of chronic Lyme disease,” said Dr.
Fallon (*see citations below). “The door should be left open for physicians to prescribe medications as
warranted, after a careful discussion with the patient of the potential risks and benefits.”
Dr. Fallon and his research team identified patients with cognitive problems that developed after being
diagnosed with Lyme disease and which persisted or relapsed despite prior treatment, in order to
determine whether patients who have already received the “standard” course of antibiotic treatment
(three weeks of IV antibiotic therapy), would benefit from an additional 10 weeks of antibiotic therapy.
They also set out to determine whether patients relapse when taken off antibiotics or whether the
alleviation of symptoms is sustained or enhanced with time.
The paper illustrates a number of problems, but the primary problem was that the controls were healthy, which means that all they demonstrated was that antibiotics provided symptomatic relief, temporarily, for certain of the self-reported symptoms.
A genuine test would have used a control group that had the same level of self reported cognitive impairment and fatigue as those diagnosed with chronic Lyme, which would have given four groups. The most common argument against the existence of chronic Lyme is that the reported symptoms are similar to those found in the general population – so that needs to be addressed in any such study.
They say:
-with which I agree. But the real issue they are raising is that they think they are treating a bacterial infection. If they are not, and are simply providing symptomatic relief with the antibiotics, then antibiotics are an inefficient and potentially dangerous way of doing this, and other drugs might be better indicated.
The bottom line, as I said in my original article (above) is that if antibiotics make you feel better, it does not imply all your symptoms are ultimately caused by bacteria. There could be secondary infection (to scratching), the sensations of active antibiotics could differ from inactive placebos and hence lead to a placebo effect, or the anti-inflammatory or other effects of antibiotics could be partially addressing your symptoms.
With all this, you should not loose sight of the real issue: is Morgellons a distinct disease, or simply a label applied to a broad symptom set with multiple possible causes? I’ve never suggested that people are not ill, or that their symptoms are somehow imaginary. I just think that “Morgellons” is not a good explanation for all these different people with their varied symptoms. People need to be treated accoding to their individual needs.
And on a related note. The following link is NOT intended to imply “it’s all in your head”, but simply that some people might benefit somewhat from the advice therein:
http://www.cnn.com/2007/LIVING/personal/11/26/o.think.free/index.html
If you really have this disease you already know any antibiotics are soon overcome by the disease. I believe there is a bacterial connection.
You believe there is a bacterial connection, but the bacteria overcome the antibiotics?
Re:”You believe there is a bacterial connection, but the bacteria overcome the antibiotics”
Yes, it’s called antibiotic resistance. This potentially includes borrelia
transferring genetic-codes to resistance to other bacteria w/o requiring reproduction. And quorum sensing to allow bacteria to save themselves from damaging environments through signalling and sequestration.
Mutations and adaptations of borrelia to antibiotics:
Galbraith KM, Ng AC, Eggers BJ, Kuchel CR, Eggers CH, Samuels
DS. parC mutations in fluoroquinolone-resistant Borrelia burgdorferi.
Antimicrob Agents Chemother 2005; 49:4354–7.
Criswell D, Tobiason VL, Lodmell JS, Samuels DS. Mutations conferring
aminoglycoside and spectinomycin resistance in Borrelia burgdorferi.
Antimicrob Agents Chemother 2006; 50:445–52.
—————–
and there’s absolutely no reason why Morgellons isn’t actually
just a different variant of lyme. Here’s what one variant from
brazil looks like, which also documents presence of
mycoplasma, chalmydia and an “unknown spirochete” that
produces lyme-like symptoms which recur more frequently
and appear to be impossible to eradicate. they state that antibiotics help with flare-ups but that flareups continue to happen with this disease
beause of the persistent, chronic nature of the infection and
lyme’s multiple defenses of antigenic variation, sequestation,
immune disabling, and secreted factors.
http://www.scielo.br/pdf/bjmbr/nahead/6497.pdf
there’s a lot people are just beginning to understand now about these bacteria … only a fool would claim any of the idiocies produced
by the IDSA — that one month of antibiotics is all lyme patients should ever have… that there are no mechanisms of persistance in
borrelia to cause chronic lyme etc. Medical guidelines made
strictly from ignorance and exclusionary practices.
There’s no reason why it’s not actually population control sprayed from chemtrails, or GE insecticides from chinese cotton. It isn’t not a lot of things.
But before we go off and speculate what “Morgellons” isn’t not, we might take a step back and ask again what “Morgellons” IS. It’s a list of symptoms. There is no evidence that it is a distinct disease. The symptoms list is too varied.
The symptoms could be caused by many diseases and conditions.
If you have Lyme, Niels, what do you think your fibers are about?
Many of these symptoms: brain fog, lesions (particularly in the mouth), fatigue, muscular pain are symptoms of B vitamin deficiency as follows:
# mental problems
# heart palpitations
# heart arrythmias
# fibrillation
# indigestion
# chronic fatigue
# chronic exhaustion
# paranoia, vague fears, fear that something dreadful is about to happen
# nervousness
# ADD (attention deficiency), inability to concentrate, irritability
# feeling of uneasiness
# thoughts of dying
# easy agitation, frustration
# inability to sleep (insomnia)
# restlessness
# tingling in hands
# tingling fingers and toes
# rashes
# crying spells, inability to cope
# soreness all over
The point, please, Soma?
I think Niels means it isn’t not, therefore “is”, although it isn’t.
ALL I KNOW IS IT ERKS ME THAT SOMEONE WILL GET ON HERE AND TALK ABOUT US AS MORGIES .WHAT IF YOU OR A FAMILY MEMBER HAD CANCER AND WE GOT ON HERE AND GAVE YOU A NAME FOR IT AND MADE FUN WHEN YOUR FAMILY COULD POSSIBLY BE DIEING WOULD YOU WANT US COLD HEARTS TO BE NICE OR HURT YOU EVERY DAY WITH COLD DARK COMMENTS THAT ONLY COME FROM THE PITS OF HELL.AND YOU WILL MEET YOUR MAKER AND YOU HAVE TO KNOW ITS WRONG OR THERE IS SOMTHING WRONG WITH YOU AND ITS GOING TO END A LOT WORSE THAN MOST OF US BECAUSE (MO0RGIES AS YOU CALL US HAVE LEARNED TO PRAY)AND THAT WILL EVENTUALLY GET US ON THE GOOD END ONE OF THESE DAYS .TRY IT YOU MIGHT SEE A CHANGE IN THE WAY SOME OF YOU MAKE SNIDE COMMENTS .IF YOU DO NOT SUFFER YOU NEED TO FIND A HOBBIE AND ENJOY LIFE BECAUSE SOME OF US CANT .DONT TAKE IT FOR GRANTED….
Make up your mind.
I’m sorry.
Well, anyway, Sandra, “morgies” is a name that patients came up with, themselves. They’re all unique individuals, with nothing in common, and I think what unites all such patients is what’s separated them from everyone else.
Where you said:
WHAT IF YOU OR A FAMILY MEMBER HAD CANCER AND WE GOT ON HERE AND GAVE YOU A NAME FOR IT AND MADE FUN WHEN YOUR FAMILY COULD POSSIBLY BE DIEING WOULD YOU WANT US COLD HEARTS TO BE NICE OR HURT YOU EVERY DAY WITH COLD DARK COMMENTS THAT ONLY COME FROM THE PITS OF HELL.
In the first place, cancer is real. Secondly, this is the internet. I don’t think that online strangers should have false assumptions or expectations. Regardless, who has said something to you, on here, that was so bad?
the antibotics helped my symptoms to a degree,it helped the lyme disease that i got i guess from the banana i ate 9 mths ago since its not a B U G.OH YEAH NOT TO MENTION ROCKY MT SPOTTED FEVER, MUST A GOT THAT FROM EXERCISING YEAH THATS IT.
Sandra says in part: “ALL I KNOW IS IT ERKS ME THAT SOMEONE WILL GET ON HERE AND TALK ABOUT US AS MORGIES”
I find “Morgies” is a term that people who allege they have Morgellons call themselves. I was unaware that it was a term solely for internal use amongst the community. Correct me if I’m wrong.
it just hurts my feelings when we suffer so much and theres no real support on this sight its like a place to play ,if somone out there knows what its like to have crawling on you ,sincerily i would like to talk to you.because we are not just for conversation pieces we want to be able to finish out our lives like were supposed to .this is not normal . maybe somone gave their self this name i am new to this sight and some of the things that are said on here are very very disturbing and those people need to find somthing else to do with their time…….
I have been under a doctors treatment for 2 years for morgelleons. The sores have long since passed, and so have the fibers. For months I have had soft white things comming out of every place on my body. Even my teeth. has anyone else had this? When you apply swan clear anti itch lotion, (wall marts generic of the poison ivy lotion) to the skin, originally it would make all the fibers come up to the surface now it pops out the soft white things kind of like little balls sometimes they have a blue center. I used to think that with all the things comming out all over I was getting better. Now it is more like an endless supply is comming out everyday with no end in sight. I would really like to know if anyone else has progressed to this stage. There is no longer any way any one can say it is all in my mind. There is a body of evidence every day.
If you are a fellow sufferer, the swan clear anti itch lotion from wall mart was a God send. The first application brings it up to the surface the second one when you rub it helps it to come out. I took a bottle of it to my doctors office with me when I was first trying to convince him I had morgelleons, I applied it in his office and when he saw all the fibers that popped out of my skin for himself, first he said it was grossing him out then he said he wouldn’t have believed it if he hadn’t seen it for himself. Then he started treating me because he knew it wasn’t just in my mind. Hope this helps you.
Hi, Linda. You’ve asked:
and:
We’ve recently had very cold weather where I live and I developed some dry skin on my face due to heating our home. It’s been sort of flaky in a few tiny patches and after I’ve washed my face, there’s little rolled up balls that resemble tiny cocoons, on the washcloth. I don’t like when that happens, but it’s fine now. Dead skin has to be gently exfoliated when we bathe, or it will continue to build up in layers of dull, unhealthy, skin. There are a variety of superficial and underlying conditions that can interfere with our skin’s normal sloughing process. Dry skin is so irritating and itchy for some people. What type of treatment has your doctor given you over the past two years for morgellons disease?
Hi, Linda. You’ve asked:
and:
Yeah, I progressed to that (and beyond) back in ’02 after my skin was so dry it was just like cellophane. Dehydration kicked it all off. I’m extremely proud to be alive.
We’ve recently had very cold weather where I live and I developed some dry skin on my face due to heating our home. It’s been sort of flaky in a few tiny patches and after I’ve washed my face, there’s little rolled up balls that resemble tiny cocoons, on the washcloth. I don’t like when that happens, but it’s just fine now. Dead skin has to be gently exfoliated when we bathe, or it will continue to build up in layers of dull, unhealthy, skin. There are a variety of superficial and underlying conditions that can interfere with our skin’s normal sloughing process. Dry skin is so irritating and itchy for people as well as for pets.
If you care to read what happened to me in ’02, you can click on my name, “Smileykins”. It may be difficult to follow, but I’ll answer anything you might want to know about it, in the comments’ section.
What type of treatment has your doctor given you over the past two years for “morgellons disease”? Since you’ve posted underneath this topic, am I correct in assuming antibiotics, and are you through with a two year treatment, or continuing them?
Thanks, Smileykins
Whoops. I’d lost my internet connection at the time I’d posted, and didn’t think the original post made it. Therefore, I rewrote my comment. Sorry.
My doctor prescribed minocycoline and Cipro. minocycoline helped to heal the sores and bring me to a point where there were no more fibers comming out. but The Cipro made a big difference in bringing the soft balls (which when broken down equal many many tiny white things) to the surface. I am unfortunate enough to have this thing all over my body. Sometimes when they come out all of a sudden liquid will come out after them which makes me think it may be a water based bacteria of some kind. It seems to be related to my pores in some respect. also I have a hard time believing that this is a skin condition. It seems to me because of the stages I have gone through that it is something deeper and the skin condition is just a byproduct of the deeper issues. I have had it come out of my nose the inside of my mouth and tongue my teeth. My private parts and even in my excrements in large numbers. After I started treatment some of the symptoms started to ease up I even was able to start losing the weight I had gained slowly however. I had to stop taking the minocycoline because continued long term use of it discolors the skin and teeth. I think that when it is all said in done there will be many more people with this. I think it establishes itself over sometimes years and then when it has it’s system established it starts to show up through the skin. I know this may sound nuts, but then again that is what most people think us sufferer’s are, but I have found that when I put the lotion on and one area it starts to come out and it appears to trigger another area to come out like it is all connected in someway. Kind of like little cities that are connected by roads. I don’t know how else to discribe it. My skin has started to feel like skin again and my energy levels increased with time in treatment. I have gone through many stages and over the period of time with treatment every layer that has come out has been different than the previous one. My discovering the swans lotion was a God send. I noticed that I didn’t get sores under my arms in the pit area. I put some deoderant on my skin to see if that was what was making the difference and suddenly a large number of fibers came to the surface. Because of the ingredience in the deoderant I didn’t want to continue to use it all over me so I did a search on the internet to see what exactly deoderant did and that was how I came up with the swans wallmart anti itch lotion. All I can say is that when I started to use the lotion it brought out a huge amount of those things all over my body which made it impossible for any doctor to deny there was an existing condition that was not in my mind. That really went a long way in actually getting a doctor to believe my sores were not comming from me having a mental problem that caused me to itch and create the sores. Thus I was able to get my doctor to start the antibiotic treatment. He did not know what it was he just knew that it was real. At least even if it isn’t completly gone I no longer have those horrible fibers and sores. I am losing weight I have my energy back I am feeling almost human again and my skin is almost back to normal. If he hadn’t taken the chance on long term antibotics and a mixture of them I can’t imagine where I would be today.
i too have those little white things coming up from my nose and my teeth and all over my skin .. i actualy didnt have them with my second trial with lavamisol .. i didnt know such a thing before , never had heard of it anywhere before and this is the first time i see someone else had it on internet , so cant be a plasebo like thing i think .. i was on a parasite cleaning program and when i added levamisol they appeared everywhere on my body .. i tought they could be trichinella and saw a dr for it she wanted some tests but there was nothing out of normal like elevated esofinils indicating a parasite problem , but neutrophils r high .. and i never had fibers coming from anywhere on my body .. i have all the symptms of chronic fatigue .. hope i can find more info on this on internet .. by the way i have black hairy tongue and they got longer like a cm more and the new coming ones were white not black as the upper part .. i scraped some of them from my tongue , they look like worms but not moving ..