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Post by shubot on Sept 3, 2010 10:42:11 GMT -5
Sarah, I understand the searching the INTERNET all hours of the day and night. I did the same thing when I first got the monster. I know this may sound crazy, but I thought I was the only person with this and I was terrified. I was searching for anything I could find to describe it, or anyone else to complain of the same symptoms. Of course I was searching for anything out there that would stop the symptoms. I found a website that did help with the symptoms after buying their products, I was able to get rid of the collembola, but most of all, they would talk to me and listen to me about what I was going through and that was what I really needed at the time. Someone who knew about Morgellons and what it was about. I do still use one of their products now, Diatomaceous Earth, and I will be forever grateful to them for helping me. The emotional support that they provided was above and beyond. They have since changed their name and how they do things. I started using the Diatomaceous Earth right after I got this illness and I am still using it today. It is one of my favorites. shop.qbased.com/non-toxic-skin-parasites-relief-s/36.htm
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Post by sarahconnor on Sept 4, 2010 3:20:56 GMT -5
shubot, call ME crazy, I thought I was the only person with this. The story of how I found M's on the INTERNET is interesting & concerning. I believe it was NUSPA? or the Pediculosis Foundation. I wrote to the Pediculosis Foundation back in 2004, only remembered the other day when I caught sight of the file in my computer. I was too scared to read what I'd written, I know I would have sounded like a right nutter for the simple reason that I was telling the truth the whole truth & nothing but the truth.
I never told anyone about my bugs. The bugs scared me, they only came out of my knee caps. I'm not convinced they were collembola. My bugs were big & very black, almost looked like an ants body, but it WASN"T an ant.
Support is so important for this disease, that's why I came back to this forum.
Thanks for caring.
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Post by shubot on Sept 5, 2010 1:46:25 GMT -5
Sarah, It is like I said, we all have different experiences in one way or another. I never had a big black bug come out of my knee. But that is the way it expressed itself in you.
Collembola was small and light brown , tan, or ivory white, very hard to see. When they would bite , it was very painful.
You are right, support is important. That is why I come back when I can too. I also come back in the hopes that my experience will help someone else. I will never forget how terrified I was when I first got sick.
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Post by sarahconnor on Sept 5, 2010 2:04:10 GMT -5
Hello My name is Gillian I live in Melbourne Australia and I am 36 years of age. My life went down hill when I was diagnosed with Fibromyalgia in September 1996. From my research I am beginning to see a great pattern forming with connections from fibromyalgia onto candida, then parasites etc. Below is point form of my slow deterioration over the past 8 years. I apologise for this being a rather lengthy comment I feel that looking back on medical history is very relevant to what is happening now. I must mention also I visited Austin Texas in January 1997 and January 1998. - September 1996 diagnosed Fibromyalgia - February 1998 diagnosed clinical depression - October 1997 - Change in Behaviour. Married at the time, holidaying in Bali with girlfriends had an affair with a guy from Melbourne. December 1997 - ended my marriage January 1998 - deterioration in mental health, not able to cope with my job, very depressed, stress from separation. February 1998 - massive lump swelling just below my lip on the right side, antibiotic taken GP was going to drain, but it cleared up, very painful. March 1998 - Nervous breakdown, unable to perform activies of daily living, had to resign from my job. March 1998 - lump swelling behind right ear, eventually burst, pungent pus, painful, this continued with quite some months. April - Tested positive to Genital Herpes after having sex (against my will) with an infected male. (I alreadly had herpes simplex of the lip which I started with at 17yrs) May 1998 - lump forehead just below hairline. Looked like a pimple felt more like a mosquito bite. Became very nasty inflamed, extruded pus and opened up like a massive cavity before it resolved, no scar. June 1998 - Suicide attempt overdose of Xanax. July 1998 - moved into another rental property due to financies. August 1998 - Skin and mental health declined rapidly. Attacked my skin (face and upper arms) with tweezers, sewing needles. I had always been a person to pick a little spots or lumps (diagnosed Body Dysmorphic Disorder 4 years ago (2000). These pimple like lumps were very different, would not heal, if touched or picked would turn into a mountain! or it would multiple. Would leave scarring, it felt like they were lying dorment under my skin.
I continued living at this premise for 2 years and during this time the following incidents: - 2 part time jobs - resigned from both due to my mental health. - Lethargy, lack of motivation, fatigue, couldn't wake, severe nightmares (typical symptoms of narcolepsy), brain fog, confusion, clumsy, lack of concentration, word finding difficulty, anxiety attacks, depression, (antidepressant medication changed 3 times), severe night sweats, heat intolerance, irritable bowel syndrome, contiuned with severe bruxism (diagnosed 1992), eractic behaviour, getting in debt, inappropriate sexual behaviour, smoked marijuana, snorted speed and cocaine, Upper respiratory tract infection, 2 benign lumps in left breast (no treatment, but these two lumps now extrude the black grit), small lump under chin, always thought my gland, (that lump is now very big, noticeable looking at me side on) chronic cough (which resolved in approx. end of 2000), Salmonella (health department unable to verify how it was contracted). NOTE: During my 2 years at this premise the lounge room had a gas wall heater, the walls and ceilings of the room turned black and black soot was found on my furniture, the landlord informed me when the property sold that the flue was blocked on the heater!! Therefore I had been inhaling incomplete combustion gases, cardbon monoxide etc. During this time my pet cat died only 6 years old, suddenly, vet said due to feline aids, but know I am unsure because her symptoms were very typical of carbon monoxide poisoning in cats. My skin problems continued as did stress in my life. My face became very pigmented, in 2001 I kept having blood spot bleeds on the white of my eye, puffy eyes in the morning, severe irritable bowel (colonoscopy confirmed irritable bowel but no ill findings), chronic decline in my Body Dysmorphic Disorder, severely attacked my face requiring psychiatric assessment at the hospital, 5 weeks off work, was cared for by parents. April 2002 less stress in my life, my skin problems resolved, I looked very healthy again, December 2002 stress back in my life BDD symptoms set in itching started when I got hot. April 2003 spots on legs diagnosed with folliculitis, felt nodules under the skin that moved, very painful, spots covered entire body, July 2003 all the hidious skin symptoms began and everyone thought I had lost the plot. Blue stuff, hairs, grit etc. Severe abdominal swelling, thickening of facial skin, expressing like a white pus, but no smell or discolouration, then at times it would express an army green colour stuff, chronic sleepiness, spent most of my time in bed, severe weight fluctuation and now today as I sit my symptoms are dreadful, all the same skin symptoms, swelling and nodules in abdomen, arms, face, all lymph glands blocked, puffiness entire body, copious amounts of white stuff from face, facial disfurgement leaving pot marks, these holes are slowly poping out, as my cheeks are literally rolled back, I can feel my cheeks pulled back behind my ears leaving a big indented line on both cheeks, face lobsided, can't open mouth properly, fluid in ears, severe pressure on right side of head, feeling dreadful after a shower - shaking, heavy breathing, and my hair gets wetter on the left and right side of my head just diagnal to my temples and at the back just above my neck. I am losing a lot of hair, it feels very thinned and out of condition all of a sudden. I feel particles down my throat like something is blowing dust or grit down, I can feel it on my chest and this inducing a weired cough and I can cough up unusual sputum, when I cough a get the same strange test in my mouth, I have the same sensation in my mouth as I do in my throat and abdomen. Mucous from my nose can run or drip without me realising, and often it is the colour of orange juice. Sore eyes with periods of white crusts on eyelashs and under eyes. Severe (induced by heat and more so at night) Itching inducing blistering very quickly then becoming lesions. The stuff from my face stings and burns and now it has a smell, something I have never smelt before it is dreadful can not relate it to anything. Dark frothy urine, pale stools. Occasional strange smells in my nose. My abdomen is like my face, it is like the skin is turned inside out and diagnal it is so painfull, this has now happened to my arms and extended my arms is very painful, severe neck pain, blurred vision at times, muscle spasms, body tremor, sometimes severe head tremor, my right foot has become a drop foot, having trouble with my speech, severe memory loss, confusion, problems with my writing skills, all organisal skills out the window. Having an MRI scan next week and going back to the Infectious Diseases Unit and Dermatology for the results of my blood tests and swabs of lesions. I never mentioned my bizarre symptoms. Fingers crossed they can get to the bottom of this. Kindest Regards Gillian (original format 12th March 2004)
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Post by shubot on Sept 5, 2010 8:41:00 GMT -5
This is a very sad story. It sounds like this person had it really bad. I was never that sick, Thank God. There may have been some other health problems going on at the same time.
I did have Chronic Fatigue syndrome and Fibromyalgia DX several years before I came down with the big M. I did have severe dry eye syndrome that was very painful and white strings would come out of my eyes. That problem was well resolved before I became ill with Morgellons.
I think it will manifest itself differently in some ways from person to person.
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Post by sarahconnor on Sept 5, 2010 18:07:37 GMT -5
That person was me.
Yes, it does manifest itself differently in everyone.
sarah
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Post by sarahconnor on Sept 18, 2010 7:56:30 GMT -5
On the 28th August I posted I was writing to appeal some Freedom of Information exemptions, well they arrived in the post the other day. Not ALL exemptions, they're holding back on 6. Trying to decide if I want to take the next step to have those 6 exemptions released. I'm concerned I could end up in more nuts than a "werribee wood duck"!!!!!! ....sorry... (werribee is a suburb in Melbourne where our sewerage goes.) Limited for time/energy these days to research, however I found a couple of links I'd like to post. I had no clue prior to the "department" taking my child of how they operated, & I'm still stumbling my way through trying to understand. My child was never physical, sexually or emotionally abused, nor was he at risk of; Mandatory reporting of child abuse www.aifs.gov.au/nch/pubs/sheets/rs3/rs3.htmlWhen Child Protection workers visit - information for parents www.cyf.vic.gov.au/__data/assets/pdf_file/0008/15839/when-protective-workers-visit-info-parents.pdfI never received a visit from child protection & I gave them a HUGE opportunity to come & visit me, but they didn't. They locked me up & took my child without even setting eyes on us! I must have missed the brochure on "you are exterminated, you have no human rights & we decide what's best for your child". Wankers!!
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Post by sarahconnor on Sept 18, 2010 8:14:18 GMT -5
...one more dig before bed...
The wankers in question didn't contact my family prior to their attack! They waited until my son was at the local police station with a child protection worker before they called. Adding insult to injury it was on my mum & sisters birthday.
Delusional???...bring it on!!
nite
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Post by amron on Sept 19, 2010 5:19:41 GMT -5
Hi Sarahconnor, first of congrats. for sharing what it was like. If it be truth be known, there are many of us that have a simular story. I had forgotten how hellish the three yrs. before the out break of lesions. I knew three years ago when I had a bloody nose in the am, that was nearly black in color, something very peurlant was happening. First of all I never had a nose bleed ever....My doctor suggested I had a new flu. You must have kept a journal for only another suffer could reclaim the strange weird course. It was a nightmare, and thats putting it mildly. I really did think that it would take me out. I lost my voice and had leisons on my vocal cord like small swiss cheese, the doctor and I were amazed, at what was going on. I was six months without a voice. Two cases of peural infussions, cystomics storm mucus strangling me, peaumonia, pain shooting out of my eyeballs, detached retinas, both eyes, six months apart small holes in the central part of vision. fluid in ears. Shortness of breathe couldn't walk more than twenty feet.Chest pains severe headaches, the story goes on and on. I know for I walked the same path, my shrink took pity on me and supplied my lung medicines, for they cost 145.00 a month. I became debt ridden, that I have not recovered. My family has all grown up and my son cared for me, I languished in bed for at least one year. Today by the grace of God I am not dying from lung, heart,sinus, they have cleared, for now.
Its our responsibility is to share with others, I am so glad I have a place to go. If I can lighten someone else's load it makes my day. There is a saying out there " We are as sick, as we want to be secret" This is our gift sight, its so darn hard to formulate a clear expression of memory, for really we wandered in a place of unreal physical symptoms. I've got stuff going on right now, but again I am as sick as I want to be secret. I hear your pain, I identify, and I pray it helps to know fellow suffers chime in with you. night
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Post by sarahconnor on Sept 19, 2010 6:13:48 GMT -5
Hi amron, thanks for relating. It's a heavy load with all this running through ones head. I never did keep a journal, though I wished. Mind you, the post I wrote further up the page (back in 2004) was enough to jolt my brain into remembering more. I remember little bits every day, it's never ending, very tiresome, emotional, the whole nine yards.
A lot of the time I hate where this disease takes me, other days, I sometimes see a glimmer of hope. It's a battle, I don't believe life was meant to be a battle.
Goodnight.
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Post by sarahconnor on Oct 6, 2010 5:10:59 GMT -5
I have to share this story I just read about on the net. The photo of this child was on of my web home page, so I couldn't avoid it. Boy back with mum who taped him to wallnews.ninemsn.com.au/world/8100369/boy-back-with-mum-who-taped-him-to-wallI know it's not a story that gives any of us positive vibes, keeping in mind what downunder said about many posts being negative. I kinda feel this story is an exception for those of us who have lost our children due to a delusional diagnosis.
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Post by amron on Oct 7, 2010 8:06:51 GMT -5
Hi Sarah, its difficult to understand how they can take your child for delusional diagnosis. Probably if you could afford a mighty godlike lawyer, and you had a wheel barrow full of cash, your story would have come out differently.
The stories continue on, for morgie, I now have cists under both arms, " Whoa! there looking for the reason. Its a real joke, and it almost funny if it wasn't so tragic.
Mayo Clinic has given up on my daughters lab. rat cancer test. In three years she has had six different protocals, so I guess this is it, she will be coming home, wondering why God didn't heal her of the lung cancer. All the relatives in the south have gotten tired, because she didn't die quick enough. Most all terminal patients experience this if they live long after diagnosis.
I got a feeling, because we are morphing that we get a goodly time extention, for morgellons. When one symptom abates, its on to the next sight for morgie. Keep up the good laughter, LOL what else can we do? night
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Post by sarahconnor on Mar 11, 2011 0:23:51 GMT -5
Could this get any crazier? Delusional tinea: A novel subtype of delusional parasitosisAbstractDelusions of parasitosis is one of the more complex management problems encountered in the dermatology clinic. The difficulty mainly arises from the fact that a psychiatric disease is responsible for the cutaneous pathology. Typically, patients complain of "parasites" or other crawling bugs on their skin. The delusion and its presentation are surprisingly consistent from patient to patient and effective management requires incorporation of psychiatric principles. In this report, we present a rare case of delusion in which the perpetrator was believed to be a "fungus." [/b] The earliest account of Delusional Parasitosis documented in the medical literature was a case report in 1894 describing "les acarophobia," [1] literally a "fear of mites." Since "phobia" implies a persistent, debilitating fear recognized as irrational by the affected individual, Ekbom [2] in 1938 pointed out the flawed terminology and suggested a new designation for psychogenic infections. In 1946 Wilson and Miller introduced the term "Delusion of parasitosis," [3] which reflected the insistent nature of the patient's beliefs. As the term implies, parasites are the classically perceived offender. Here we present a novel case in which the delusion was the belief in the presence of persistent infection by a fungus. dermatology.cdlib.org/1412/letters/delusional_tinea/rashid.html
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Post by amron on Mar 12, 2011 0:39:36 GMT -5
Many thoughts go through my head, if I didn't have all of these multifacet symptoms, I'd check into the nearest mental facility.
I was reading your medical records again, and was dumbfounded with the lumps on your breast emitting black granuals. I too have the black, brown, crystals, that surge from two leisions on my hand. Fibers are always in the mixture, the wavey black ones. If I dont open up the leision with a tea bag, the presure under the skin is unbareable. It comes out with only a gentle rub in a circular fashion. I believe I am totaly loaded with toxic debri, accumulated from a life time of heavey metals. Twice daily this junk comes out. The hand fills up like it is a depository for metals, or what ever. To add to this confusion in the hand is the morgie critter, that has to be extracted with considerable pain. Then the tiny little green fungus type fellows that are the phony skin makers, itch like he-- between dumpings. I like to believe I have a handel on the thing, but its been on going since late last Septmber. Nuts would be easy, bring it on. LOL
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Post by sarahconnor on Mar 12, 2011 2:41:28 GMT -5
Many thoughts go through my head, if I didn't have all of these multifacet symptoms, I'd check into the nearest mental facility. I was reading your medical records again, and was dumbfounded with the lumps on your breast emitting black granuals. I too have the black, brown, crystals, that surge from two leisions on my hand. Fibers are always in the mixture, the wavey black ones. If I dont open up the leision with a tea bag, the presure under the skin is unbareable. It comes out with only a gentle rub in a circular fashion. I believe I am totaly loaded with toxic debri, accumulated from a life time of heavey metals. Twice daily this junk comes out. The hand fills up like it is a depository for metals, or what ever. To add to this confusion in the hand is the morgie critter, that has to be extracted with considerable pain. Then the tiny little green fungus type fellows that are the phony skin makers, itch like he-- between dumpings. I like to believe I have a handel on the thing, but its been on going since late last Septmber. Nuts would be easy, bring it on. LOL Finally!! I found the "quote" button, only taken me 5yrs. I was emitting black granules, like rocks from my nipples. Mine started in my left breast in my early teens with black fluid from the nipple. I was told I had blocked nipple ducts. Unfortunately when the breast specialist tried to get the black fluid to appear, it wouldn't. When my entire body was infested in the early stages, my breasts were full of black thorns. I was covered from head to toe with these thorn in my skin. I don't want to remember the torture & disbelief, though I must to be able to heal.
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Post by amron on Mar 12, 2011 22:42:50 GMT -5
You were so young Sarah, to have all those happenings. You're a victorious person, so important, we are so blessed to have your expertise. Suffering so, has a universal open arms affect, and you display this compassion. Bless You! love amron
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Post by sarahconnor on Mar 12, 2011 23:51:13 GMT -5
You were so young Sarah, to have all those happenings. You're a victorious person, so important, we are so blessed to have your expertise. Suffering so, has a universal open arms affect, and you display this compassion. Bless You! love amron Thank God, I thought everyone hated me.
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