Thank you for letting bend your ear.

Karol

Then I found you guys and now I feel a little better about her return to work, where she sits near me as well a several other people. I guess my question is, if someone says they think they have Morgellons, do you think there’s anything to worry about as far as sitting near them, sharing the occasional plate of cookies, using the same restrooms and work fridge, etc? You guys are really that certain there’s nothing here that’s contagious? I guess I’m looking for reasssurance of some kind that what she has is definitely not a “real” contagious disease…

Gillian Says:
July 10th, 2007 at 5:11 am
This is my last post folks.

“The Last Post” -

For those who are unfamiliar with the antipsychotic drug Risperidone

Risperidone
http://en.wikipedia.org/wiki/Risperidone

Risperidone Side Effects
http://www.ncbi.nlm.nih.gov/sites/entrez?cmd=Retrieve&db=PubMed&list_uids=10811239&dopt=Abstract

About Your Medication
http://wch.org.au/pharmacy/media/medinfo/risperidone.pdf
http://www.medicinenet.com/risperidone-oral/article.htm

RisperdalSide Effects & Drug Interactions
http://www.rxlist.com/cgi/generic/risperid_ad.htm

RISPERDAL CONSTA – INJECTION
http://www.risperdalconsta.com/html/ric2a/pd_consumer.xml?article=faqs.jspf

This letter was left for me in the psychiatric ward, delievered to me from one of the other inpatients. She was a lovely girl, my heart broke over her story too. Without disclosing any of this young woman’s details I would like to share a little about her story. I will call her “Monk Angel”.

Monk Angel was involved in a tragic car accident 10 years ago. She went onto say that her accident was almost identical to that of the late Princesss Dianne of Wales (aka The “Queen of Hearts”). Monk Angel has also endured a terrible journey. I don’t know how the poor girl is still standing and looking so beautiful. “You are a natural beauty ////” is what I would say to her. 17 operations on her leg sustained from the car accident would be enough for any human being to throw a hissy fit over. She is now suffering from Post Traumatic Stress Disorder.

………………………………………………………………….

Dear Gillian

You are one amazing women, from what you’ve told me about your life you have been thru hell and back and I’m sure that’s not even 1/3 of the story.

Your positive attitude towards life inspires alot of people in here and you may not know it but they listen to you and take on board what advice you give.

I have no doubt that you will fight for what you want and all I can say is “Go Get Em”.

If you would like to catch up give your details to ///// we are all going to the ///// for a good night out. Your spirit is so bright you light up the room everytime you enter.

You have been a fantastic addition to “our group” and I wish you well with everything you have your heart set on.

Take care of yourself

Love() ////
………………………………………………………………..

I never spoke of the “Morgellons” to any of the inpatients during my recent stay. I know better, those people would have fallen like a house of cards.

Unfortunately I had to speak of the “Morgellons” to the doctors which I was very reluctant to do. Reliving “Morgellons” was not what I wanted. One doctor did ask for me to write down for him in my own words what “Morgellons” was. The thought of that sent my head spinning. Then I said “nope – enough is enough!! – stick with your siimpleton mind girl”!

I wrote this for the doctor -

M-O-R-G-E-L-L-O-N-S by Gillian //////////

M = Misdiagnosis

O = Ostracized

R = Research

G = Genesis

E = Endangered

L = Laughed at

L = Lied to

O = Oxymoron

N = Negligance

S = Sick/suicide

I think I kinda worried the docs a little by writing suicide. The suicide was an adenmendum, it took me 5 minutes literally to write my theory and someone made me angry later on that day so I added suicide. I couldn’t help but think about poor Travis Wilson who killed himself last year, he suffered Morgellons too. Morgellons can induce suicidal ideation, it all depends on who you are, and what ya made of. Me is me, I have Rickettsia, my genetics and most importantly share the same world with billions and trillions of people.

Bing Bang Bong!! – that’s the “Morgellons”.
Have a great day all.

Gillian.

* From the MRF’s June 2007 newsletter…

1.
Promising Research Opportunity :
One of the country’s most renowned biomedical research institutes has submitted a research proposal to the MRF. The research would focus on uncovering the differences in the blood of people with Morgellons and those who do not have the disease. The short term goal of the research is to identify markers that would allow us to diagnose Morgellons disease. The long term goal is aimed at using these markers to understand the cause of the disorder itself. The cost of this research project would be $233,000 for one year.

This research is extremely important. This research institution has the most advanced technology available in the world and some of the country’s leading researchers. We are very fortunate that they have taken an interest in Morgellons disease. This would be the first Morgellons research project that focuses on the blood of patients. Unfortunately, this type of research is very expensive.

Please donate to this and other research projects if you are able, and ask your friends and family to also join in the effort. If you wish for your donation to be used for scientific/medical research only, please designate in the memo portion of your check, or on paypal, that funds are for the “MRF Research Campaign.” 100 percent of these funds will go towards research.

I think the name of that renowned biomedical research institute should be presented to the patients. Here is that newsletter in its entirety:

http://morgellons.org/newsletters.htm

* From April 11, 2007′s MRF newsletter to all registrants (which I don’t have a link to, having seen it on a message board)…

7. We would like to welcome the newest member of the Morgellons Research Foundation’s Scientific Advisory Board, Ahmed Kilani, Ph.D., MT(ASCP) Dr. Kilani is a microbiologist who is doing his personal best to help us find answers to this confusing and tragic situation.

Ahmed Kilani, Ph.D., MT(ASCP) is the President & Laboratory Director of Clongen Labs

http://www.clongen.com/morgellons_disease.php

* Back in February was when I’d first heard of this lab’s involvement, when a “morgellons disease” patient posted comments saying that they were listening to her and setting up an assay for her theory. Last month, she’d posted what appears to be email correspondence from them on the lionsgate “Bug” forum.

RE: Topic: What R These? / Why R Experts Blind to Them?!

| | | Inbox
_________,

Would it be possible for you to send me stool and skin s****ing (or scab)
samples? I would like to test your theory. So far, we have three targets
we are investigating including ////////. Keep in mind that what we are
doing is very preliminary investigation and being able to draw a connection
between a parasite and Morgellons will make it a little easier to receive
government funding and move faster towards finding an answer.

Best regards,

////////

~~~~~~~~~~~~~~~~~~~

I am happy to hear that you are excited about the test for ////////. Keep
in mind this is an investigation and a new assay that we are setting up so
it will take a few weeks and it is not diagnostic but if it turns out
positive, it would be worthwhile testing a larger group of Morgellons
patients.

~~~~~~~~~~~~~~~~~

Thank you for your e-mail and information on the isolate you described. I
am going to setup the assay with no control just to test your hypothesis.
As you know, if you do not use a positive control and the results turn out
negative, you would have no confidence in the test but I will do it as soon
as possible. I will be in touch with you as soon as I have any results that
are significant.

~~~~~~~~~~~~~~~~~~
________,

To show you that //////// has been neglected as a pathogen in terms of assay
development, there is one article only in pubmed citing a molecular assay
for detection of the ribosomal RNA. I will work on it and run the assay on
several samples with no positive control (no one sells it).

Best regards,

My brother in law had been diagnosed with clinical depression, something I wasn’t aware of until after his death. Whether or not that’s technically a mental “disorder,” it certainly involved a great deal of mental anguish on his part.

It’s difficult to tell whether psychiatric treatment is beneficial to Morgellons sufferers. At least one report I’ve read on here seems to indicate that anti-psychotics are successful, which implies that at least some of the time, the problem is mental. This fits with my own observations that at least some cases of Morgellons are psychiatric in nature. However, other sufferers report that such treatment is ineffective. At least some of these (based on their resistance to a psychiatric diagnosis) are unlikely to take anti-psychotic medication or cooperate with counseling, which would lead to its failure. However, that still leaves the portion of sufferers who do cooperate but do not find any relief. I don’t know enough about the success rates of psychiatric treatments in general to know what that means. My field is legal rather than medical.

In my previous post I said “My experiences are simply case studies; two subjects are obviously not a large enough sample to draw any real conclusions other than the obvious, that not ALL people who claim to have Morgellons actually do (assuming my observations are true and accurate).” What I was trying to say there and in other parts of my posts is that my experiences have caused me to develop a personal opinion, but one that I know is not informed enough to be much better than an educated guess. That’s why the CDC will have the final say in my mind, and my opinion will line up with their findings. Very little can be learned unless a well defined and statistically significant sample is used. Case studies like mine or even autobiographical stories like yours and other sufferers just aren’t probative of much.

Any generalizations I make are simply my opinions as to where my observations logically lead in my mind. Anyone who reads them and the information that they are based on will hopefully know not to take them too seriously given the small sample size, but hopefully they add at least a little to the discussion given the fact that the vast majority of all Morgellons information at this point is of a similar nature.

Wisco

Having more thoroughly read your post I apologize for not addressing the very thoughtful manner you handled your concern about other’s mental states, as you experienced with your own friends and family. Although I’d have to say that suicide doesn’t necessarily result from a mental disorder as much as mental anguish. Yes, one could say that many in the Morgellons community suffer from intense mental anguish that sometimes does lead to suicide. Whether you buy into their subjective experience or not doesn’t really matter if it is real to them. The strange part is, those who have sought counseling and anti-psychotic mediations didn’t seem to find any relief from their ongoing subjective experience of Morgellons, and their mental anguish.

Do you think your experiences put you in a position to determine who in the world does or does not suffer from a mental disorder? Are you a physiatrist or someone working in such a field? It’s just that you seem to have looked at these two people and made some sweeping generalizations about all who claim to have similar symptoms (common on this blog).

Thanks,
Aherah

I am a very strong girl, but I am wearing down, whatever Morgellons actually is it is VERY REAL and extremely painful, torture, I can not find enough words to describe.

I do hope there is a heaven coz I really need something to look forward to, my beautiful baby boy so innocent – he is my life, my love. No one is helping me and antipsychotic injections in my arse is not the answer.

I’ve said it before and I will said it again Morgellons is CRIMINAL.

I wish all the real “Morgellons” suffers peace and freedom, if you find both of these can you please let me know and show me the way. I can not deal with the system any further as they are dealing with me.

Imprisoned in my home.

I guess we can call this our “new Mental Health reform”

I appreciate your respectful tone, at the very least (rare on this blog). As far as my kids are concerned, they began experiencing what you term “DOP” (i.e. feeling bugs popping out of their skin) when I had been free and clear of the fibers for years (no scratching, no rashes, etc). The whole thing started up with them again in Sept 2003. I had not known that there was a Morgellons group at the time; at 11 months, 3 and 6 years of age, I’m sure that they did not know that there was a Morgellons group either. After my 3 year-old stopped eating, had horrible ongoing diarrhea, and began producing fibery-rashes, I found the MRF. Today, knock on wood, we’re all doing well.

I do not beleive I suffer from a mental problem. I do believe that I have a fiber-producing issue. I do not know if it is parasites; I just don’t know what it is. Like Michael and I, we’ll have to agree to disagree. Yes, I too hope that the researchers are able to get to the bottom of this, but I’m not holding my breath.

It’s true, there is no objective reality. Even what we think we know or do not know is subject to question.

I have to get back to work.

Take Care all,

Aherah

Rowley: The behavior of the family in my two encounters was perhaps the most disturbing part.

Aherah: My experiences are simply case studies; two subjects are obviously not a large enough sample to draw any real conclusions other than the obvious, that not ALL people who claim to have Morgellons actually do (assuming my observations are true and accurate). That is true even ignoring that fact that, as you point out, people who are seeking help in the legal community may not be representative of the group as a whole in other ways.

One thing you bring up is the concept of “taking your word,” which I generally never do. Not because you or anyone else is inherently untrustworthy or likely to lie, but because what people “perceive” to be truth is always at least a little, and often very, different from the “objective” truth. Whenever two unbiased people tell their true story about an event, what a video camera would have recorded never completely matches either. When parties have an interest or a preconceived notion, the differences become even more marked even when both sides are trying to tell the truth, the whole truth, and nothing but the truth. In your case, I believe that you didn’t verbally suggest to your kids that they had bugs on them, but they may have picked up non-verbal cues such as scratching, or heard you mention the feeling while listening at a keyhole or to a phone conversation. Or they may have had no input from you at all; it’s simply impossible for an outsider like me to determine the Truth, and only somewhat easier for you. If that makes any sense.

I’d also like to point out that, at least to me, a psychiatric problem is every bit as real and as frightening as a parasitic infection. A college roommate of mine “went” schizophrenic and became extremely paranoid. He claimed I was stealing his mail and refused to believe it was on his desk even when a third party physically took my roommate’s hand and placed it on the pile of mail. I also lost a brother-in-law to suicide, despite the fact that he had a nearly perfect life in my eyes. I don’t doubt that despite the “objective” reality, he felt in his depressed state that life was not worth living. Even if every case of Morgellons is a “new” form of DOP, that does not in any way diminish the fact that people are suffering and that they must be helped and treated with compassion like any other person with any other medical problem. The brain is organic and in my mind mental problems ARE physical problems.

You also point out the difficulty in communicating symptoms to those who haven’t experienced them. A good point and one I hadn’t considered. A “middle of the road” explanation would be that (assuming for the sake of argument that Morgellons is a distinct disease) Morgellons sufferers develop a form of DOP wherein they believe that their fibers or insects are much more visible than they actually are because they don’t realize that what feels so unnatural to them appears to be commonplace to an outside observer. I hope I made it clear that my opinion, that Morgellons is primarily a mental problem that often accompanies previously identified physical problems, is simply an opinion based on the facts that I have at my disposal. In an infinite universe, all things are possible. My opinion just seizes on the explanation that I find most likely. Medical researchers will have to have the last word.

I do think that this blog serves a useful purpose even though there is still research to be done. It’s clear to me that at least SOME people who feel that they have or may have Morgellons have DOP or other conditions. This site can be useful to people who need to be reminded that other possibilities may exist and that the best course is generally to listen to your doctor.

Whatever you have Aherah, I hope you beat it.

Wisco