Hello my name is Nick otherwise known as 'nick@nite'. I believe my first symptoms were about five years ago or so when I was having stomach pain and IBS - or that’s what I self-diagnosed myself with after seeing my doctor.
From there, I remember my first few crawling sensations across my upper lip which then progressed to intense itching. Next was my facial hair which felt like wire and was very sticky at times. It was also very hard to shave off.
Some mornings I looked like Santa Claus with white hairs or fibers all over my face.
Next was some twitching in my right arm, and calluses at my fingertips which seem to shed and although I do work with my hands these are much different.
Yes, I have sores as well. They are mostly on my face which come and go sometimes throughout the day.
I am sharing this in the hopes that someone else who has these symptoms knows they are not alone. My wife and my best friend have been suffering with this for a long time, but I will let my wife tell her own story someday, hopefully when she is in remission.
This thing of ours, Morgellons, is very powerful and hopefully as time goes on, someone will find a medicine to keep symptoms in check. In the meantime, there are people getting some help and I do get some relief that I am grateful for. Unfortunately, the symptoms always come back, so that's why it's wise to switch up what works, as Morgellons seems to adapt.
I would like to thank Cindy and Charles for sharing their story on this website.
Also, big shout out to all my friends at Morgellons sanctum.
I am only sharing this because I want the sick to see that there is a light at the end of the tunnel. Stay positive, find an experienced Morgellons physician, and you can get better!
I contracted this disease around September 2006 and was a full-blown Morgellons patient by October. I have not been sick long compared to many. I am 38 now and used to be healthy. I did not know anything unusual was going to happen or anything about Morgellons Disease. In fact, I did not even know it existed.
My children came back from my girlfriend's house. Little did I know they would bring home a new friend: head lice. These were no ordinary lice. My daughter had to have two Permethrin treatments that were about as effective as Diet Pepsi. We then spent hundreds of dollars trying to stop the continuing itching, biting, and crawling sensations with natural remedies but the sensations continued. I had 20 lesions on the back of my neck, and my joints were extremely painful. My feet had also swollen from a size 8 to a size 10. I had to buy shoes in a bigger size to accommodate this strange event. All I knew was I was in excruciating pain. As a result, I did what any person in pain and misery from an unknown condition would do: I decided to go to the emergency room since it was later in the evening. The ER doctor did not examine my neck lesions at all. They felt like a campfire on my skin, but still he had no interest. I had put Icy Hot on them and had not scratched myself at all, as I knew doing so could spread infection. You know when a medical examination is bad when somebody refuses to make eye contact, stands six feet away, and has their arms crossed. Instead he talked to me like I was a drooling imbecile in a condescending tone. He said "all your vitals are fine. You have nothing wrong with you." However, my neck was never looked at, PERIOD. He said, "Those wounds are self-inflicted. You are delusional." I asked why my balloon feet and ankles were swollen by two shoe sizes. He said without even looking at them "There is no swelling."
The misery continued, and the following day I felt like I was being eaten alive. I was too naive to realize that the swollen knee and the joint pain were connected. My fingers became so swollen that I could not get my wedding band off even with soap and all the old tricks. In desperation, my husband tried to cut it off, but he was unsuccessful, and it cut through the "love" on the "I love you" inscribed on the inside of the band. It was so bad I could no longer wear it. It had been on my finger for three years.
I found hope on October 5th, 2006 when I saw a physician who had seen this before. I had this unrecognized disease which is being referred to as Morgellons Disease. I have been through a lot, but have found remedies that do help the symptoms. Now, at last, I finally feel human again.
~ Ann G.~
You can email Ann here: firstname.lastname@example.org
My health had been deteriorating for years, and I was covered on my arms, hands, and legs with horrible lesions which would not heal. Strange fibers emerged from the lesions. I had been diagnosed by Ginger Savely with chronic advanced Lyme Disease with many organs and systems involved. My exhaustion was off the charts, my weight soared regardless of diet, my thyroid had been destroyed, depression prevailed, narcolepsy and sleep apnea and night terrors took over my nights and days, my day/night cycle was out of sync, my short term memory and ability to concentrate caused me to doubt my own mind, my mind ruled in a slow-motion fog, and the lesions caused me horror and shame and hopelessness.
I went to three Board Certified dermatologists who promptly scooted me out of their offices. Each of them coldly recommended that I consult a Psychiatrist if I needed further care. A Board Certified Internist (while looking at my conclusive blood tests from Ginger Savely's office) informed me that "we do not have Lyme Disease here." I left all their offices feeling like an alien who had been drop-kicked in the stomach.
I was on high-dose antibiotics for five years and took many supplements. And I prayed. My friends and family prayed. I determined to live the best of what level of life was left for me. I found a special dress which would cover my horrendous arms for my son's wedding. The sleeves had to be light and thin because my heat intolerance made even minor activity impossible. I tried to forget my appearance as I saw people at the reception staring at my hands. How I knew that feeling...
My doctor in California suggested that I take a break from antibiotics because I seemed to be doing better, and miraculously the lesions had begun to slowly heal. I was almost afraid to notice that the healed ones were not being replaced. Lyme Disease and Morgellons have greatly increased my courage and readiness to take risks so after consulting with Ginger Savely and getting her approval, I dared present my huge self (I had now gained well over 100 pounds--my own body felt like a bumbling, swollen stranger) for Gastric Bypass surgery at Baylor Medical Center where I did NOT mention Morgellons. I prayed that the lesions would not appear in the five incision sites because any break in the skin had always resulted in a profusion of lesions and fibers. I decided that if this indeed did happen, I would bare the shame, knowing that the surgeon could not "take back" the completed surgery. Another miracle occurred as I did not develop a single lesion or fiber!! I have now lost over 70 pounds with no complications and am not beginning to recognize my own body!
As long as there is time, there is hope! Stay the demanding, awful course. Do not allow Morgellons, Lyme, or ignorant cold arrogant doctors to diminish you! The Lord Jesus Christ and Ginger Savely have been my mainstay, my hope, and my healing. Stick with your gut-feeling about your medical provider and do not be swayed by the doubting opinions of others. Do exactly as he/she directs, pray to God, believe in His Mercy and Power, seek Truth, limit exposure to nay-sayers, and remember that your value does not lie in the way others may see you and your lesions along the path to your healing. Feel free to email me should you desire at email@example.com. My reply may be slow, but it will be forthcoming. PS In case you wondered, my scars are fading and lessening month by month. Blessings and truth and real hope,
Carol A Texas
I have been a Registered Nurse since 1977. Never in my worst nightmare could I have dreamed the events in my life in the past several years. My nightmare began back in the fall, 2001. This is when I developed what was thought to be contact dermatitis; a fancy name for skin rashes. Next, I was told it was head & body lice or even scabies. This was not too far from the impossible & considered to be just a job hazard. I worked as a Public Health Dept R.N. I was treated by my office docs, initially, without much thought to it. However by Nov. 2001 it was clear that something more involved was going on and I saw my first dermatologist. He did a few punch biopsies of sores on my legs and arm. These came back as inflamed tissue, negative for parasites. No further tests were done. I will never forget the last time I saw him. He came into the room with one assistant; he then left. Upon returning he had 4 assistants with him. He said to me, "I don't know why you think you have bugs in your skin but you don't. He gave me a prescription for Orap. I sat in my car in the parking lot and cried for a good hour. I never went back.
In January 2002, I was found by a local police officer wandering in the middle of the night in the midst of a severe thunderstorm. Thinking I was a victim of crime, I was taken to ER and had a CT scan, which was normal. I have no memory of this entire episode.
In April 2002, my hair on the left side of my head totally sloughed off while shampooing. About this time lab work by my general MD began coming back with severe anemia & abnormal differentials. However, my employer made me consult a Psychiatrist. This doctor (Psychiatrist and a long time collegue) was upset that my real illness was being ignored. He ordered a few tests just to get started and stated that an Infectious Disease Doctor should manage this. The MRI he ordered in May 2002, was not done until July 2002. It was shockingly positive for a few scattered unidentified lesions in the white matter of all areas of the brain. This was explained as possibly "normal aging process" However; the CT scan from Jan '02 & previous MRI from 1997 were completely normal. (I was actually told that the MRI was normal and only found out the real results by accident).
This is just a brief view of how life changed for me after being infected with Morgellons. I'm sure all details are not necessary. I will just do a condensed version of my Medical Situation since being infected with Morgellons Disease. I was in a unique position to be able to view this situation from the patient's side as well as the medical providers'.
Outline of medical "care"
-- Summer, 2001 Initially began as allergic rash poss. lice or scabies;
--treated off and on with various ointments, etc.
-- only brief periods of relief & became worse over time;
--Fall, 2001 generalized dermatitis, sores on scalp, neck, shoulders, back, legs, feet, ankles, arms, hands, wrists;
-- red streaks noted from wrists to between fingers; on neck, arms, and legs. First derm doctor who was a shocking disaster as previously described.
--April, 2002 --Acutely worsened with development of breathing difficulties, chest - pleuratic pain; generalized skin lesions including linear red streaks on neck, throat, legs, feet;
--allopecia with scalp lesions, pedal & pretibial edema in L leg;
-- Vision & neuro changes including decreased sensation with numbness L arm -L leg, slurred speech, severe headaches;
--Lab CBC and differential continued mild to moderately abnormal.
-May, 2002- Psychiatric, Neurological and Dermatology referrals
-- Neuro consult recommended referral for vision issues;
9-2002 2ND derm doc told me not to see neurologist, eye specialist or any other doctor AND not to have any lab work done. He Rx'd Zyprexa, which I was to take for the next month. After being on this medicine, he would then decide if I needed to go to the other doctors. One dose of Zyprexa put me to sleep for 3 days; dose reduced per phone call with Dr's office;
--Received letter from Dermatologist office-- had fungal culture report back from July '02 testing which revealed Aspergillius-no further follow up persuaded since it was felt to be an unimportant finding; about 2 week before I had received a letter from him (2ND derm doc) dissolving our physician-- patient relationship, no explanation;
-- 10-2002 sudden onset of loss of vision L eye. (This was less than a month since the derm doc had told me not to go to any other Dr's.) Obtained emergency appointment at SCO. Associated Professor at the Southern College of Optometry found something in my L eye which he was unable to identify; appeared as brown speckles in the orbit, eyeball, tissue on underside of eyelid; also noted an absence of the normal pulsation on left side which indicated a blockage of blood flow to left brain- this would sort of validate the neuro symptoms but still not identified the causative agent.
--Infectious Disease Consult testing inconclusive recommended referrals for biopsy of eye tissue & spinal tap for spinal fluid analysis. Did not obtain due to the derm docs orders.
--12-2002 discovered Morgellons Research Foundation. It was Christmas Eve, possibly the worst one of my life. As a direct result of this disease, I had lost my marriage of over 20 yrs; my 2 sons were confused and frightened--not to mention the fact that there futures were forever changed due to our financial situation. I was forced into bankruptcy to avoid losing our home.
--In 12-2002, MRF had made connections with a retired NASA Physician in Houston, TX. He was interested in seeing some of the Morgellons patients. I traveled to his office from Memphis, Tn.
--In Feb '03, I was his 4Th patient to be diagnosed with Morgellons Disease. Eventually, lab work done later would confirm Lyme Disease, too.
-- --In June '03, my medical insurance ended. COBRA was $700.00 a month. After the bankruptcy was paid, I was left with $500.00 a month to live on. Imagine 3 people living on that--utilities, gas, car maintenance/repairs, food, medicines, school supplies, etc. It just doesn't work very well. Because of my sick leave benefits being $2070. I could not get any assistance. It was not taken into consideration that the bankruptcy court took nearly $1600.00 before I received anything. These were the very same agencies that I personally supported as well as worked with while in my position in Community Services at the public health dept. Never in my entire life had I sought help, but now I truly needed it. I was stunned to be told that my income to too high to qualify for ANY help. This could not be happening!? It did. Reality hits hard with life's lessons.
--This next year (2003-2004) was even worst than the previous. I had no medical insurance, limited finances, no family support, teenage sons to care for (the youngest of which is handicapped), and a disease no one knew about. When it is said, "My plate is full" I understand first hand the meaning. My faith in God is the only force that kept me going.
-- In July of 2003, two things happened. First, I had an acute worsening of neurological symptoms and was admitted to the hospital. Since I was in Memphis, my Houston physician was not able to manage my care. No one from this local hospital called him as a professional courtesy. The 2ND day I was there, an infectious disease doctor came in my room. He stood at the door; it was about 6 AM. From the edge of the room, he said that he did not believe in Lyme Disease, and mentioned several other diseases, too. He proceeded to inform me that he was the only I.F. doctor on staff at that hospital; he sternly stated that he would "not be involved with this disease” and added that since no other I.F. doctor was available, I was out of luck. On his way out, he stated, "Of course, you do have your doctor in Texas!" He slammed the door upon leaving. This whole scene took maybe 3 minutes. I still relive it almost daily. I was in awe of this behavior. I had been a medical professional for 26 yrs, yet, never had I treated or seen a patient be treated in such a manner. I was discharged home in a few days, no better and without any answers.
Then, the next disaster hit. On July 22, 2003, a STORM with straight flat line winds of 102 mph hit our county. My home was nearly destroyed. The entire county and surrounding areas were declared Federal Disaster Areas. Due to my physical condition and lack of personal support, my homeowners' insurance company managed to get by without completely restoring my home. This is still a deplorable situation that I have to contend with every day.
In August of 2004, I qualified for TennCare. At last I had medical coverage. Before, even if I could manage to cover a doctor visit, it usually was impossible to obtain the medications Rx'd, and any lab requested was even further away. My last visit to Houston had been in July'04. My doctor there had written several Rxs as well as essential lab requests. I still had them. As soon as I was notified of receiving TennCare, I had the lab drawn and obtained the medications. TennCare truly saved my life.
The loss of dignity and respect are the worst part of Morgellons. I am a medical professional and have been for better than a quarter of a century. I have been certified as an expert in my field by the Tenn courts and testified in cases for the state. I was well thought of and respected. How could that be ripped from me? Why was I suddenly not believed concerning the signs and symptoms of this disease? What had happened to the medical providers that wanted to actually care for patients?
In Sept. of 2004, my doctor in Houston retired from clinical practice--to focus on research. No one in Memphis, a supposedly major medical center, knew about or was willing to learn about Morgellons Disease. It was financially impossible for me to continue traveling to the few medical providers actually treating Morgellons. They were located in areas such as California, North Carolina, Texas. Even having medical coverage, I still could not get proper medical treatment. For the next 7 months, I continued following my Houston doctors protocol as best as I could. I am just thankful that I was a nurse and could understand and follow upon what he had begun. Most Morgellons patients were on their own. And, most are nurses as well.
In February of 2005, a physician in New Mexico came forth with information about Morgellons Disease. He had been treating patients there with this same condition, although termed it "The Fiber Disease" and "Lisa's Disease". He had been researching this strange infection and had developed a preliminary protocol for treatment. He had experienced some amount of success, although the research was an on going process. A full clinical research program should have been formed, but that takes money--lots of money. MRF had very limited funds. Morgellons patients were typically, as financially deflated as I was. The CDC tried to ignore our existence. Public Health Depts which are mandated by laws to protect the public ( & one at which I actually worked) were of no help either.
In March of 2005, a local physician in my area and I crossed paths. I had been seeing providers in the office for depression related to my disease and situation. This wonderful physician learned of my dilemma and sought me out. It seemed that he had other(s) which had symptoms like mine. He invited me to make an appointment, which I immediately did. In March 2005, I saw him for the first time, I provided the latest information about Morgellons for him to read as well as contact numbers of others involved, Initially, he followed the plan started by my retired physician in Houston, After a while, he spoke with the physician in New Mexico via phone. I began the new protocol in April of 2005. After a rough start, I began to dramatically improve, Over the past several years, medications have been updated, adjusted; remissions and relapsing experienced intermittently; and best of all, had hope restored for my future as well as the futures of my children. Yes, this wonderful physician welcomes any and all Morgellons patients to his office. He has seen about 12 and helps other docs with theirs, too.
As we move into yet another new year, I look towards the horizon with hope & a strong sense of purpose. These past years have been so horrible. But, I have come to realize that if I had not had all the bad stuff, I would never have met such grand and marvelous people who have enhanced my life to the max! Today, I am still sick & continue to try a varied protocol of medications. The victories have been few, but oh so very sweet. I have about 10 good days a month, & they are scattered about (not all together). The 8-month remission I experienced during the spring & summer of 2005, gave me a burning determination to find the answers we all need. I will never stop until God directs me home.
One year ago this month our first Morgie of the month went up on this web-site. So many things have changed, yet so many things are still the same. We are still galvanized to bring recognition to Morgellons Disease. That hasn't changed. The Morgie of the Month idea came from a brainstorming session that Cindy, Charles and I had. Most frequent topics discussed patient support and fund raising for research.
That day, mid 2006, we were talking about patient support ideas. I noticed in talking to patients if I ever mentioned someone else's experiences I would be asked for an update. Morgies wanted to hear other Morgies stories. "I'm not alone." "We are not alone." "I could have written that myself". "That's my story."
We do have a voice and we can go on record and support each other all at the same time. We care about each other and we care about patient support. This hasn't changed either. Thank you to our trail blazers. It's not easy being the first, but your day was well spent.
Looking for Morgies 2008. Picture yourself in the empty box. Send your story along with your favorite picture to firstname.lastname@example.org
You could call me "Scar Face". You could call me "Bugsy". One thing is for sure--my face looks like it was on the receiving end of a machine-gun mob hit. My aspiration of being America's next top model is ruined! Ruined, I tell you! I guess I'll try for the next best thing--Morgie of the Month.
My name is Kelly Pickens. I am 38 years old and a native of Atlanta, GA. Those 3 things I know for sure. The rest, I forget..often.
Up until about 4 years ago, I went to work everyday, paid my bills, enjoyed reading and cooking and sports. Now, I either sleep for days or stay awake for days. I await the latest appearance of oozing, open sores. I have a hard time remembering what I did two minutes ago. What am I doing? oh yeah..
I think that I might have contracted Morgellon's disease while crawling under old buildings looking for kittens. Shortly after doing this several times, I broke out in a rash on my legs. At first, everyone thought it might be scabies. Of course, the scabies medication didn't make it go away. And thus it begins.
The first dermatologist I went to scraped my skin and said I had a slight staph infection. She gave me some antibiotics which didn't work. The next visit, there were some hushed whispers outside the examination room. I was told that "it wouldn't be necessary for (me) to come back"..ever..please. Loosely translated: "Get lost." There were several visits to other dermatologists who politely told me I needed to see a psychiatrist. I'll take that as a compliment. Apparently, they think my mind is so awesomely powerful, I can cause skin lesions to spontaneously erupt on healthy skin. Sure, Superman can fly, but he's got nothin' on me, Super Kelly, maker of sores, able to make individual hairs dance on her head.
I also began loosing weight and experiencing alot of dizziness during these months. After much testing, there was never any cause found. I was getting desperate and angry, and feeling very much alone. My temper and ability to concentrate were also noticeably changing. At some point, my friend ran across Charles Holman's blog about his wife Cindy's weird journey through similar illness. That lead to finding the Morgellons Research Foundation page. If nothing else, it was good to know I wasn't the only one going through this.
We morgies have few people to rely on right now for help through this struggle, but the disease has definitely brought many of us together, both in misery and friendship...and now a combined force to find some way to battle this undefineable thing. I don't know where I'd be without all of you to talk to. I'm also grateful to my parents who have supported and helped me, and even came out to our recent rally at the CDC. Now how many parents would do that?
I have since gone to see many, many more doctors, notably, the top infectious disease doctor at Atlanta's largest hospital. He referred me to the neurology department for an MRI of my mighty brain, and what do you know? They found brain lesions similar to those of a person with MS. Of course, they went right to work finding out what was wrong with me...you know, the usual way brain lesions are treated--they sent me home and told me I should see a psychiatrist. Sweet, sweet progress.
Thankfully, I am currently feeling much better than I have in a long time. I have fewer open lesions than usual, but my face is badly scarred. I have been able to go back to work part-time. I'm putting weight back on (damnit!). My mood is much better, but my memory and concentration are lacking. Last week, I absent-mindedly "hoisted" the anchor (and all of it's UN-ATTACHED rope) over the side of a boat just before a mighty storm blew in. Dr. Greg Smith's very patient sister-in-law, Cathy, spent an hour snorkeling to find that anchor so we wouldn't all promptly drift out to sea and die. Now that's a morgie moment I'll NEVER forget--OR WILL I? (Umm, Go Georgia Bulldogs!)
My name is Greg Vigil. Many of you may know me from my web-site www.morgellonsusa.com. My web-site has been up and running for some years now and is always a work in progress. My goal is to keep it current with any information I find helpful to the Morgellons community as well as work for recognition and offer hope for all affected by Morgellons/Lyme disease.
I have Lyme and Morgellons disease and I'm currently unable to work I would like to add there is light at the end of the tunnel. I have found a great Doctor in my area and continue to have faith in research science.
I live in southern California, I'm married with 5 children. Please visit me at my Morgellonsusa website.
Hi! My name is Belinda Smith, I'm a nurse from San Antonio, Texas. I have traveled to Florida, California, Mexico, Belize, Honduras and lastly Galveston, Texas. I was hesitant to come out in the public with this, but we have to speak out if we have any chance of surviving. I am not really sure how I contracted this disease. I have had issues with the Herpes Simplex 1 virus getting me sicker than the normal person. I have a history of having cytomeglovirus in the early 90's.
I did contract some type of conjuctivitis near Roatan, Honduras in 2003. I had been in Honduras on 3 previous trips for medical missionary work. The last trip was a pleasure trip for diving where I contracted some type of conjuctivitis. The US would NOT let me back in the states. I ran high fever, green thick discharge, weakness and diminished vision in both eyes. I was treated by an opthomologist with steroid injections that I gave myself and antibiotic eye drops. I had to have a letter of treatment after one week. When I got back, I stayed home due to lingering fever. I went back to work and after another week was unable to see the computer screen with my corrective lenses or without. I went to a physician at the University of Texas Health Science center whom stated he had no idea what it may have been. Stated it appears my optical nerve did not suffer permanent damage and no further testing was necessary after I questioned him. He sent me on my way after informing him of the geographical orgin of contraction of this unknown organism. I had a sexual relationship with a Honduran for approxiamately a year and half.
I continued to battle the Herpes Virus itermittantly, lost about 20#'s which I was ok with. In February , I slept with boyfriend whom is a Gulf War/Iraqi Freedom Pilot. We went to Galveston Island, Texas where we spent only 2 hours on the beach during our 5 day stay. We were bit by something on Jamaica beach the whole entire time. We decided to pack it up and went home the next day. We thought we would be leaving these things in Galveston. Wrong! They went back to San Antonio with us. My boyfriend was living in Wisconsin at the time and took them back with him to a local motel. We used all the scabies treatments (permethrin, Iverctim) we could get our hands on. These bugs were slightly visible to the naked eye. We could see them hop on the bed. They stung us continuously, itching and crawling throughout the body! I mean throughout. I was becoming sleep deprived and as a nurse it was critical that I get sleep. I went to my physician afterward for relief or assistance with sleep and the anxiety of the crawling with some type of pincher creature that was taking over my breasts through mammary ducts and nipples, which I submitted to Dr. Wymore. I tried to dig them out, because they hurt! Just so happens, I had a mammogram at that time before the secondary staph infection began. The mammogram came back with highly dense breast tissue with a nodule near my left nipple (concern for cancer). The second mammogram came back negative.
We slept on a air mattress with a tarp due to the fact we could not get the bugs out of our clothes. I had taken them to work with me and found that Diamotocous Earth killed the stinging form specie stage and treated my apt and office area. I kept myself as isolated as physically possible. I was taking 3 baths a day of borax and/or peppermint baths daily. I had strange small cirular lesions with a pimple in the middle on each joint, neck, breasts and one on my left buttock. The one on my buttock was different than all the others in that it felt like a piece of plastic had been placed inside me. All the lesions had strange fibers come out of them. I knew that I had to get them to heal regardless of these strange invaders due to the fact the skin is the most important organ against infection. I went to my primary care physician whom took a biopsy of wound exudate from nipples which was found to have heavy staph and fungal growth on my nipples and belly ring which was placed in Galveston.
Next came the vision changes (blurred/distant sight changes), headaches, shooting pains in the head, forgetfulness, and behavior changes. I was so irritable and anxious about what was happening to me and that I had never learned about these type of diseases/parasites in medical school as an RN.
Presently, I only have the active lesion on my buttocks in which the University of San Antonio Health Center took a core biopsy which the first one disintegrated in front on the physician, interns and house staff's amazement. The second core biopsy was taken which came back as an unidentifiable infectious process. I went to my f/u appt and took the lesion I dug out of my buttocks which was deep for the dermatologist to view. I never heard from any of those physicians. I was made by my employer to take a 2 week sick leave or more if needed for my skin infection, which I did, of course. I have purple circles where these lesions were.
I have some scars on my arms, my skin looks at least 5 years older than I did last year, my joints feel like their cartilidge is being eaten up while having severe neck, arm and leg pain that seems to take turns rotating, intermitently. I have shooting pains to my stomach, chest pain, bladder pain, irritable bowel with debri in my waste, brain fog and a perineum surgery that has been sewn together 3 x's and it is still not intact after 2 years. I have an over abundance of hair growing on my body in places it didn't grow before and at an alarming rate. I am blonde and have black hairs coming out of my forehead, white eggs in my eyebrows, lashes, nose and ears. My hair on my head literally moves. I can see a black minature snake like creature swimming in my bath with red fibers, blue fibers, black hairs, brown small insects, black specs and white crustations/twirled up fibers,lice looking larvae that I can see literally come out of my arms, legs, etc., without permanent exit damage to my skin. It is able to cross the cellular barrier and I know that is not good. It is so upsetting. I know it is almost unbelieveable, however, it is the truth so help me God and I AM A CHRISTIAN.
The fatigue and GI symptons, the anxiety has caused me to miss another 4 days of work. I am afraid that I won't be able to perform my job in the near future if I don't get help. I am sending some information to my present physician to inform her of the latest possible findings and treatments for my physical in two weeks in a last ditch effort to get help. I hope you will share my story to assist in finding the cause of this devastating serious illness.
I would be more than happy to participate in any research that would be available or to initiate. I have contacted the CDC, Texas Dept of Health , my representative, with a very generic response. This is alarming and WILL have devestating effects on the working men and women of America. The tax base will dissappear and we will be like our neighbors. We must do rapid and swift research and utilize what we have now till we find something better. I am begging the physicians to step out of their cook book practice, do some listening, sampling and examine their patients. We need their help. The nurses can only do so much. How ironic, that we are the largest profession that is affected.
Belinda Smith, RN, BSN, CCM
San Antonio, Texas
You can email Belinda here: email@example.com
August '07 - Sheryl, Age 47
Living With Morgellons
I am preparing this narrative at my computer in my kitchen (the “computer” room gives me an icky feeling so I have abandoned that location) drinking a glass of lemon ginger tea. Yogi teas have a thought provoking quotes on quaint little tags with each teabag, and my current bag has a one states, “The beauty of life is to experience yourself”. Yes, it is. I’m not quite done experiencing myself, and somehow I am now a different “me” that I have to experience. Do-overs! I don’t know or like that “me”. Well, I am learning.
My journey with Morgellons (as if it were a cute little side-kick) started 4 years ago and has a similar pattern to many other people with this illness. I saw myself as a vivacious! A marathoner, I had just completed my master’s with hopes of conquering the world of education, a mother of 3, and a wife. Long story short: woman notices weird skin, general practitioner clueless, dermatologist tells hubby his wife is delusional, hubby convinced and looks at wife with a raised eyebrow, wife researches herself and finds Morgellons, Lyme test positive, great nurse practitioner but lengthy drive, wonderful new doctor closer to home (BUT-I still get lost 4 out of 5 times going to see him), treatment for both and many more bodily upsets now off and running.
I want to share with you my challenges, and some experiences that this presents daily. This being the only thing I have known or done for 23 years: teaching. I recently (4 days) ago had to resign from my reverent position as 7th grade reading teacher at a local middle school down the street. I am not mourning, but it has been my identity for some time, and now I am looking inward wondering if I will ever teach again, or if I will work again. I am a great teacher and middle school kids need that. They love me, I love them and they thrive in my classes.
Teaching, while having Morgellons, was not easy at times. What sets me apart from many people with this disease is that I have not had any lesions. I am grateful for this, and I totally I empathize those people that suffer such madness. I can’t imagine the pain emotionally and physically. No lesions yet, anyway. Mine is one of those “you can’t see what I can feel” cases with: skin sensations as though a community of something lives, moves and recreates in every square inch of my body, neuropsychiatric issues ie: OCD, ADD, apathy to life, mood and personality changes etc, hyper sensitivity to all light, sound, touch, fatigue, visual decline, and let’s not forget the fibers. No one from my campus knew/knows what I have other than Lyme Disease. This has been the frustrating because it caused me (or allowed me) to detach from the faculty. Once a social warrior, I became a recluse not willing to reveal my precise illness due to the controversy and risk of losing my position. I had been too uncomfortable in my skin (so to speak) to sit and spend quality time with any of the teachers. Plus, I didn’t care to spend time with anyone.
Looking at the last year, I had become inconsistent with my attendance because of extreme fatigue, and my colleagues were constantly scrambling together lesson plans for a sub. I never planned ahead for a 3 day stint of bed-ridden pleasure. I never have been able to plan 3 days in advance in the best of health. I felt so guilty, and am sure some people got irate with my absences. The kids are the ones that suffer with the revolving door of subs and disconnected curriculum. I just sleep right through the whole week!
Then, grading papers becomes an art. Here’s where delusion comes in handy! Did I teach that? Or, is that my stack of 3 days and 6 classes of work (and you must load sevies with work when you have a sub). Did I grade those, and record those? I ended up grading some kids work three times, or never grading others. It is likely, the work never got turned in. I bet you get my point. I am naturally organizationally challenged, then toss in a monthly 4 days out with scrappy work. Ugh! It quickly became a lose/lose scenario.
While in the classroom, things are most often engaging and fun. I love the kids and they love me. I look for process not product which leads to less homework, but requires higher thinking skills and a more right-brained approach. BUT- I had become so easily confused, distracted and lost, that I felt it interfered with the kids learning the content. If noise bothers you, don’t teach 7th grade. I am now so hyper-sensitive to sound that by 6th and 7th hour I literally had to have the kids freeze and mute just to gather my thoughts. Sometimes for 10 minutes while I looked for things, paced, reread plans etc. I thought my head was going to wind up and spin off! I know lots of healthy people deal with this but I know my body and this was not me. It was incredible the difference my teaching was from 1st and 7th hour. Poor kids. They didn’t mind so much, especially if I could not gather my sentences, find my assignment or remember what the heck I was doing. Then, the master teacher kicked in and I could wing-it until the end of class. We had some interesting dialogues as a result of my insanity. It was also, sadly, not the best for the students so I chose to resign.
Though I make light of my circumstances, the few who know me also know I truly panic when the Morgellons gets to be too much. It is a cruel and sad illness. I sometimes get angry and play victim, but now I am striving for a positive health mindset. I have experienced some of the most bizarre things I ever thought imaginable, and it just gets weirder. (Is that a word?) I am going to live, and make my life happen. Lastly, I am positive my two younger children and husband have this, but they do not “feel” it. Why is that? I can see it, feel it, and sometimes, I even hear the ice-cream man.
July '07 - Linda Vosylius
From Fox 9 News - Minneapolis/St. Paul
We met Linda Vosylius on one of her "good" days. The former nurse has a tough time peeling herself off the couch. Her mind is fuzzy, and bandages hide deep lesions on her face...
"It's a life of terror, she said. And a life that at some point will be worth living again, or not."
Vosylious says she's had Morgellons for 20 years. She no longer works, and her husband bathes her. She has coughing spells, shooting pains in her muscles and joints, and there are these strange string-like fibers.
"In the back of my throat, I think this is one of their party spots, she said. "I know they're there because I took a piece of gauze wound around a finger and did a scrape back there.
I've had Morgellons for many years, but I've known of my problem as Morgellons for only one year. Before that, I thought that the culprit was Chronic Fatigue Syndrome. Ignorance was comparative bliss. Since discovering the petition a week ago, this is the first window of opportunity I've had to compose a comment, due to the severity of pain that I have. Despite the very adequate attempts of my doctor to control the pain, it keeps getting ahead of me. The antibiotics stave off the deterioration a bit. My husband needs to assist me with the most basic of needs, such as bathing, food preparation, and care of my horrible lesions, as he is a nurse also. I'm unable to do anything but attend to my own needs as best I can, and my husband must do everything else. I use a walker in my home, and trips to the doctor are becoming a real problem due to the severity of the consequences that the effort causes. I haven't driven for many years. I need the wheelchair when I leave the house, and just the requirement of getting to the car in the wheelchair, sitting in the car for the trip, and the exertion of talking during the appointment, leaves me in such a debilitated state that it takes days to regain a pitiful status quo that keeps changing for the worse. My family is just now coming into a sobering awareness of how severe my health crisis really is. The contagion possibility is keeping me from seeing my dear daughters; one has two children who don't know who the heck I am, and the other will shortly give birth to twins that I won't be able to see. If only the CDC would tell us if it is contagious or not I may be foregoing being a grandmother unnecessarily. I'll never get the precious time back that's gone but, please, could I see my daughter's twin babies? I'm missing it all. All of us who have this vicious disease are missing what makes life worthwhile. My career, my art, my beloved walks in nature, my hungry mind, a masters degree that was never conferred due to my inability to complete the last semester after four years of intense effort all of it is gone. Please help us!
Statement from Linda Vosylius' sister:
My sister,Linda,has suffered with Morgellons Disease for many,many years. Once a brilliant psychiatric nurse,and only a semester away from her Doctorate in Alternative Chinese Medicine,she is now relegated to her home,and mostly her bed. Her lessions are to the point of disfiguring and her days and nights are spent just trying to keep the unimaginable pain under control. The "brain fog" has robbed her of even her ability to continue making the beautiful jewelery she became so adept at-also rendered unable to continue as the incredible seamstress she also was. Her fatigue is crippling and the depression great. She has lost so much-and because no one seams to know the contagion qualities of this monstrous disease-she does not see her two daughters-one with two small children and one expecting twins in July. One can only imagine the emotional pain in being so terrified to infect their grandchildren-that the children and the grandparent are denied the love and connection that only that relation holds in his life.Because Linda is who she is,it has been a sacrifice born of pure love for her children,but the grief she experiences over this is killing her as sure as Morgellons is. CDC-NOW IS THE TIME- Help all these dear people. They deserve your time and research-don't turn your back on the worst (and possible pandemic) disease to hit the world since Aids go unaddressed one more day. Have courage to proceed,and mostly,have mercy. These people have suffered long enough-and we need some answers. Thank you
Statement from Linda Vosylius' brother:
I am a pediatrician in Tacoma, Wa. and have a family member in Minnesota that is quite disabled and has these skin manifestations. We would like to see some kind of statement by the CDC regarding the current understanding of these peculiar skin manifestations and disabling symptoms. What do we think? Just make a statement: it is time. What should we (medical scientists and clinicians) do about this?
-Robert Gramenz, DO, FAAP
June '07 - Byron Kasahara
Does Morgellons have a favorite food?
This is a question I ask myself very often. In my own observation Morgellons seems to love Japanese food.
As you may well have guessed I am of Japanese ancestry. My name is Byron I am Japanese American approaching the age of 40. I used to lead a very active life. That consisted of drag racing and playing basketball. I was a professional Pool & Billiards player on the ESPN Pro tour. Just when I thought I had control of the three diseases that plagued me. Diabetes, high blood pressure and high cholesterol, Morgellons entered the picture. After four years of countless eye surgeries to save my eyesight due to the previous three diseases. Any eyesight that was saved was almost completely lost due to the Morgellons. Approximately seven months ago I starting seeing and feeling things crawling on my arms. The feeling of biting and stinging in my fingers and toes got so bad I went to the emergency room. The ER physician promptly looked at my diseases and said that this was all in my mind. I consider myself a very practical person knowing a little about medical practices myself. My wife and I went home and proceeded to tear the room apart thinking there was a spider in the room. We found a spider nest and killed it. Anything living including air molecules should have died when we fogged the room. Yet the biting and stinging continued and got worse. We made arrangements to see my primary care physician where even after showing her open lesions on my feet and legs she asked me "What is so bad in your life that you are having these hallucinations?" Feeling that all my concerns fell on deaf ears I was told to provide proof of these crawling organisms which we promptly did. She dismissed the samples that were given to her and called them skin flakes. Skin flakes are not fluorescent green. Feeling as if I were beating a dead horse my wife and I took the Japanese buffet line and went home cursing the whole way. We began to search for other avenues. After consulting a physician we thought was a parasite specialist in central Arizona at his office/home we paid a consultation fee of over $1000 only to be told that my body was full of toxins from a previous job. He proceeded to push me to order his products without a thorough examination. We purchased several products only to find out he is not a licensed physician. Needless to say we decided not to continue his cleansing regimen.
Currently Morgellons infests my entire body and inside my eyes. Morgellons is not only hard on me it is extremely difficult for my family. My step-children I did not see for 4 months even though we live in the same house. I never left my room and I sat in the shower for up to 14 hours a day. Morgellons proved to me a couple of things. One, that physicians are narrow minded and would rather close their eyes to an issue that is not understood than try to work through the problem. Two,my gifts from God including my wife who has kept me sane throughout this whole ordeal and who I owe my life to and my step-children who try and help out and understand as much as they can. My mother and my new friend Mrs. February. Turn to those closest to you do not push them away no matter how much they do not understand what you are going through because once they understand half of the battle and is won. I thank God everyday for my wife for I cannot do the simplest of tasks that others take for granted without her I would be nothing. I would not be writing this article now. Do not lose hope instead of panic try to understand what is going on with you. Speak to those who can help. You have my e-mail address if you would like to contact me please e-mail me anytime. Keep your thoughts clear, concise and above all you have friends.
Byron (all you can eat Japanese buffet)
May '07 - Kristen & Eliza
Hello, my name is Kristen and this is my daughter Eliza. We are suffering from Morgellons disease. Here is our story:
Eliza came home from school with lice one day in January 2005. By the time we realized this, we all had it (except for my husband, who is cute but bald!) Never having experienced this before, I learned that lice are very tenacious and difficult to eliminate. Creams and oils and potions don’t work—daily combing out the lice eggs was the only way we were able to rid ourselves of them. To better see the lice eggs, we purchased a high powered magnifying glass.
After the lice, my son, daughter, and I became very sick with upper respiratory infections. My son developed a severe pneumonia that almost put him in the hospital. Then, we all broke out in rashes, predominately on our face, chest and scalp. My daughter’s rash spread to her lower extremities and began to ulcerate. Many visits to my doctor and pediatricians ensued.
The doctors treated our upper respiratory infections with antibiotics. But the continuing, lingering rashes were ignored and treated with insignificance. We were all treated for scabies with pyrethrin creams unsuccessfully. Then we were treated with Ivermectin for resistant scabies- –again unsuccessfully. The school nurse kept sending Eliza home for fear of an emerging plague spreading to other students. The doctors just hemmed and hawed, and kept prescribing cortisone creams and Clindamycin gels (none of which worked by the way), and released Eliza back to school. Upon further research of lice, I learned that they can carry diseases: typhus, Rickettsia, Rocky Mountain spotted fever, borrelia. When I presented this to the ID docs at UCLA, they just ignored it, and gave me malathion to put on my scalp for resistant lice, even though the lice were now gone.
More bizarre symptoms developed. Six weeks after the lice infection, I developed a severe crawling and itching sensation in my sinuses and other body orifices. My daughter and I blow black sediment and fibers out of our nose. This horrible itching continues to this day. A brown, sticky sediment builds up on the back of my throat every day—only gargling with Listerine several times a day loosens it off. At night I suffer from biting and stinging sensations all over my body, predominantly on my legs. Brain fog and profound fatigue comes and goes in waves. Joint pains and muscle aches, neuro-muscular twitching, numbness and burning of extremities have developed. The pain in my left hip makes it painful to walk.
In general, my doctors say “I don’t know what this is”, and don’t pursue anything further. I have had to go independently to specialists to have further testing and investigating done. Like 95% of Morgellons patients, I do test positive for lyme disease by Igm Western blot. The lyme specialists are the only physicians who have truly cared enough to listen, look, and examine us. Unfortunately, it is all cash pay as insurance companies don’t want to acknowledge lyme disease , because then they don’t have to pay for coverage for it. My medical bills have been exorbitant.
My daughter and I suffer from daily itching in our sinuses and blow black fibers out of our nose. Underneath the magnifying glass, you can also see blue and red fibers. These red, blue, and black fibers also appear in unbroken skin that sheds off my face after a facial peel. I asked my doctor to please look at these fibers more closely. After looking at the fibers under a high powered microscope with a pathologist at UCLA, my doctor came back to me very disturbed. “The fibers are blue and red!” he exclaimed. I responded, “Yes, I know, I’ve seen them—what are they?” He replied that he did not know and neither did the pathologist. And that was the end of it. No further questioning, examining, consulting done. I just go home and suffer with the blue and red fibers plagueing my daughter and I daily. My son (who did not want to be pictured), has been left with terrible acne that will not respond to treatment. I developed acne at age 50, never having had it in my life, not even as a teen.
Clearly we have been invaded by Morgellons, perhaps vectored by the lice. What is Morgellons exactly?—a bacteria, fungus, parasite, virus? Nobody knows exactly, and clearly the medical community does not want to know. So the suffering continues. But the most painful thing is seeing my children suffer, and watching their health slowly deteriorate. God help us all
Thank you to all who have worked to help end the suffering of Morgellons, God bless you. And I pray daily for a cure for all of us who are suffering.
April '07 - Steve & Laurie Smith
"Dear New Morgellons Order....
After several months of wanting to submit our story we found a picture we both are happy with and now WISH to be featured on your Morgie of the Month Section when you have an opening for us.....
We have our sweet and dear four legged friends featured in your Pet section (AnnaBelle and Beardsley) so we need to complete the circle by including our story......
Thank you for all that you do to bring awareness and education for Morgellons.....
We Love you Guys.....
- Steve & Laurie
Here is our Story for Morgie of the Month...."
This picture reminds us of pre-Morgellons, one of the last fun pictures we had taken.....several months after this picture I became very sick.....my liver counts were shooting off the charts and Steve already had lesions on his back we just didn't know they were Morgellons.....it has been downhill health-wise since.....
After learning we suffered from Morgellons in May of 2006 (thanks to media information) we backtracked our health misery to a wastewater treatment plant inside a chemical plant near Freeport, Texas.....an area considered a hot spot for this disease.....
The year was 1993.....the company my husband worked for introduced macroscopic NANO sized organisms (5-6 different parasites and bacteria mixed together) into his work place for sludge cleanup at the wastewater treatment plant.....there were - NO SAFETY PROCEDURES - in place for the mechanical/maintenance technicians doing maintenance on the equipment needed by these organisms.....
After backtracking and doing our own people research here is a small example of the "trail of misery" my husband and I left the past 13 years.....
Every fellow co-worker from that wastewater treatment plant my husband worked with and their families are infected with symptoms of this disease. one co-worker died from unexplained liver failure in 1997... 4 years after exposure to these organisms and my husband fell deathly sick in 1998... 5 years after exposure to these organisms.....
Steve's Boss/Friend from his final employment.....seven years in Arizona said we were reading him like a book when rattling off symptoms. Several close co-workers/friends now have symptoms and some include their pets and other family members. Steve's daughter and her new premature baby. Steve's mom who has stayed with us several times in the past. We believe my mom has been infected due to her change in health....from a healthy woman to chronic illness.
I hold my breath for my two sister's and their families
Steve's brother in Louisiana and one in Mesa, Arizona have symptoms
This disease takes time....time to reproduce in the HOST and show its ugly face BUT now it has been 25-30 years since they started using organisms for environmental cleanup....remember those big words spoken in the late 70's how "CHEMICAL FREE" would save the environment and using microbes to do the dirty work was our savoir.....well they have manipulated these organisms in so many ways without much regulation or controls and then used for chemical spills, oil spills, sludge cleanup in wastewater treatment plants, pesticides and other types of environmental cleanup. All I am starting to see is STRANGE unexplained disease. Disease in humans, pets, wildlife and plants. What a huge mess they have created. This disease is not a mystery people claim they have "bugs" or "organisms" because they do....we are NOT stupid about our own bodies....NO ONE was listening and I am not sure which department has let us down the most.
Some of our symptoms over the past 13 years include.....
Painful lesions that can take years to heal..........Breakouts cause extreme itching usually beginning bug bite like in nature under the skin and can spread easily
sensation feels like infected slivers or prickles on tissues being attacked
granular items that feel like plastic or jagged edged and very sticky things come from skin
lesions produce rock hard covers while underneath you can feel your tissues being attacked
marks and discoloration all over face, neck, arms, legs from 11 years of lesions on my body
lesions on scalp that burn and pinch
Skin crawling a feeling of parasites running on your body and into your eyes
Weakening eyesight and a grit feeling you can never get rid of
IBS and weight loss
Painful joints and weakness in strength
Shin muscle cramping and muscle twitching
Terrible nights sweats.....waking up soaked, the sheets, night shirt, pillow everything
Unusual pains in body over last 11 years such as
Severe pain in back where doctor thought I should break out in shingles any day but didn't't
Severe pain in face but neither dentist nor doctor could find reason
Very low tolerance to physical activity chronic fatigue.....small tasks can produce excessive sweating
New skin sensitivities.....now one bug bite can send my body in overload,
Severe intolerance to alcohol, we both get violently ill after drinking - so we just don't
Feeling of being overwhelmed and trying to catch your breath........and often a light headedness about you
Easily stressed - notice this more so in the heat.....from sun worshipper to the dreaded summer now
Brain Fog..trouble getting words out.....like a stuttering but not
Compromised immune system
Drastic body temperature fluctuations...heat radiating from head, skin sweating but cool in the mouth
Here is a sample of some of our other health issues throughout the last 13 years:
Both treated for similar severe lower back pain and treated by cortisone injection into our backs by a pain management specialist within months of each other.....I have had unusual unexplained pains in my body that come and go out of nowhere.....pain you can't hardly bear then gone as quickly as it came
Painful sores/lesions that have continued for 11 years for me and remised for Steve until recently. We think once diagnosed with RA the Prednisone (6 years now on Prednisone) and Methyltrexate has helped keep his lesions at bay but recently he has seen more lesion activity.
Both Steve and I have deteriorating teeth. Steve lost 4 teeth the past few years....I had a begnin growth on my gums near the right eye tooth removed and my front teeth are best described as disintegrating.....I was always told what beautiful teeth I was blessed with and.....just keep those gums in good shape and you will have those teeth for life......not so with this disease.
Both have sand/grit feeling in our eyes and eyesight problems my husband can see the floaters in his eyes he says very distinctly look like worms
Both have weight loss.....
Steve - 40 pounds in 3 years
Laurie - 35 pounds in last year BUT for several years I was bloated and my weight was very hard to control
Steve has had terrible unusual overwhelming body rashes
Steve at 39 years old stricken with a form of RA specialists cannot figure out.....he has NO HISTORY of RA in his family. His non-response to traditional treatments even qualifying for PROSORBA treatments a blood dialysis (once a week for 12 weeks) and Steve completed the treatment twice (a total of 24 treatments) and was considered disabled..........I believe this SAVED HIS LIFE the blood dialysis filtered these organisms from his body.....relieving his liver that was in crisis at the time.....otherwise he was ready to go down that is how sick he was.....
Both of us have dry thinning skin.....our skin looks 70 years old sometimes
Steve has swallowing troubles.....every meal he eats.
Steve has had weird vascular issues since infected - four days on vacation came home with his leg so swollen again baffled vascular specialists as to why. after tests were completed a vessel in his ankle exploded and bled out.....thank god a fellow employee arrived and found Steve at the shop in such condition and got him to the emergency room. again, NO explanation why this happened...
I cannot wear summer clothes in public. I would rather die of heat...this is misery in itself.
Total hysterectomy because my reproductive organs where a balled up mess and nothing to salvage......Why?? were my reproductive organs a balled up mess???
We believe Morgellons infected patients should not give blood.....and these organisms are housekeeping in every organ of our bodies including the blood of the infected.....
We personally have infected 4 dogs and 1 African Grey parrot.....within 6 months of bringing her into our home the poor thing picked every feather she could reach out and then died....it was awful....I was wondering why?? everything we brought into our home that we loved was sick or dead....I love animals and now I fear infecting just one more......
This disease is so destructive....you loose the closeness of family and friends because of fear of infecting them and eventually become much too sick to work and support yourself.....we went from active overachievers to chronically ill hermits.....we now sit and wait for answers that should have been started 10 years ago.....
This is the biggest BLUNDER OF THE CENTURY.....we are the perfect HOST for these organisms including wildlife and plants anything coming into contact can be infected and I believe like all parasitic type infections.....NO ONE is immune from this one.
Thank You, New Morgellons Order for this opportunity to tell our story
~ Steve and Laurie Smith
March '07 - Ali & Holly
okay I'm brave, here goes
My name is Alisha, Ali for short. My two year old daughter and I are both infected. I am 30 years old, last year I could pass for about 18, maybe younger, but that's not the case anymore. I grew up in Seattle Washington, was very athletic all of my life, and am close with my family. Although I haven't felt quite right for about 5 years, this last year was the worst, and most unusual. Prior to moving to a small town, less than 1000 people, I owned a pet salon which I loved, in Seattle. I worked my hiney off every day, but it never seemed like work. Last year about this time I came down with a sickness that could only be described as unbelievable. My energy felt like it had been drained out of me and muscles that I didn't know I had were strained and pulsing with pain. I thought that I was working too much and too stressed out from being a mom, gosh, and so many other things that were going on in my life. And then came the lesions, the fibers, the brainfog, the chest and heart pains, the vertigo, the panic attacks, and finally the isolation. At the time I could afford to let my employee's run the shop while I got better, but guess what, I never did. Doctors were of no help, nor the dermatologists. I even had one doctor go as far as diagnose DOP over the phone. A family oncologist whom my parents have known for 35 years! Six months ago my husband and I decided to sell the business and move to the country. Animals are my passion, but my health was more important. I left my mom and dad behind, needless to say they were a little upset that their only grandchild was to be so far away. It's the little things like that that get to me. I was born on my fathers birthday, he always said I was the best birthday present he ever got. I'm scared to visit because he might unwrap his little birthday girl present now, and be mortified at what he saw. I look like a shell of my former self. Some have called me beautiful, and I did cry alot in the beginning because of how I looked,but as they say beauty is only skin deep, I realize now that your body houses your soul. This last year has been trying and confusing. There have been times where I have screamed in agony of what has happened to me, that I want my life back, that the way I am acting is not the person I am. On your tombstone there lies a dash, two dates on opposite sides. I want that dash to mean something, to mean everything.
It seems that Morgellons stops you in your tracks. It will rob and steal everything and every body, if you let it. The harder you try to get rid of it, the more it takes. Like most of you reading this, I was so confused about what was going on, I turned to the internet for research. And then came the day where I found out what Morgellons was. I dropped to my knees in front of my daughter and cried like I have never cried before, with her baby hands comforting me. Shortly after that was a very shakey call to the CDC. I have never in my life been that frightened as I was that day.
Two weeks ago my mother in law made a hair appointment for me, gave me a gift certificate and a smile, hoping that I would get out of the house. She is upset with me right now because I cancelled it. I did not have the heart to tell her that there are sores all over my scalp and some of my hair is falling out. A hair stylist is the last person I want to see. I know she meant well, and I have tried to explain my situation, but she is still angry. Like I said, it is the little things that bother me. What I have realized lately is that you might be weak and sick, but your spirit is untouchable by sickness. Only you have controll over your spirit, your soul. If you give it permission to go down the dark path, it will. For me, I am stronger than my sickness. My flame will burn bright. I am not Morgellons Disease. I will not let a disease define me, I absolutely forbid it.
I am getting better every day, although each is a battle in some way or another, and I try to stay positive, even though it is difficult at times. But always I remember that I am strong, and beautiful inside, caring and giving, and try as it might, Morgellons can never take that away from me, ever!
Love to everyone out there
You all mean so much
Through Holly's eyes
Nice to meet you, my name is Holly. My mom is Ali and she said that even though I'm just a toddler, I still have a voice so I get to say sometheing here too. I have had really bad unexplained rashes since I was 6 months old. I have been to many doctors, not all of them were so nice to me, and they said it was excema or a diaper rash. My mom was brought up to respect her elders and went along with what the doctors said until my last visit, she questioned the doctors knowledge and we were asked not to come back. I am a social butterfly and love to be around others. I like to introduce myself to every person I meet, I like to see them smile. I have good manners and say please and thank you because it makes people laugh. I am a goofball and love it. Morgellons makes me sad though. Halloween was fun until I got home and couldn't enjoy my candy, I cried the whole night. I ask every day for that candy, but mamma always says no. I love to sing and dance and can't wait until the day I am big enough to go to the dance studio in town, but for now mamma and I just put on the workout videos and that seems to keep me going until nap time. I am learning to use the potty chair and mommy finds all sorts of neat fibers in the bowl. I wonder what they are myself. Is that what is making us sick? I still have sores on me. They are every where and they only slow me down just a little. I take my vitamins and get to take really cool baths. The night time is hard for me. Every night I fight not to go to bed because of the monsters that tickle me. It's scary, so mamma bought me some fish and she stays up every night with me while we talk to the fish until I get so sleepy I can't keep my eyes open. I know she goes and sleeps with daddy but every morning when I wake up she is there in my room with me. That makes me feel better. There is a program in town for toddlers my age called Little Seeds. I hope I get better soon so I can go and play, and I am also looking forward to preschool, if I can go. Mommy teaches me at home because she is worried that I might be contagious. I am wiser than my mom thinks, I am her rock and inspiration. She always says that I should've been named Grace because I reminder her so much of it.
Eskimo and butterfly kisses to all of you,
February '07 - Patti Nash
I discovered I had Morgellons in August, 2003. My face broke out in lesions just before a trip I had planned to Ireland. I was desperate to get my skin cleared up. I made many trips to my doctor and scheduled myself to go back every 2 weeks. Sometimes I would call the doctor before the 2 weeks were up, to switch to a different antibiotic and ointment because what he gave me had no effect. I looked like I had been in a nuclear accident. At the same time I was feeling worse by the day. I was so tired I could hardly walk across the house. Just the thought of packing and tying up last minute details made me feel exhausted. I couldn't figure out what was going on. My body was betraying me. I started looking on the Internet for some clue as to what I was experiencing. I felt I was helping the doctor as to what direction to go in. I had a time frame and no time to waste.
I immediately came across Morgellons. I read a little and thought no, it can't be that. What I saw seemed to be saying Morgellons wasn't real. Kept looking on the Internet and nothing seemed to fit what I was seeing or feeling. My searches kept bringing me back to Morgellons. I would read a little more and leave the computer. I was so confused, I didn't know what to think. One day I said to myself: "You have Morgellons, that dreadful sounding disease. What a mess you are in! A disease that isn't recognized." Where do I go from here? Well, the answer was NOT TO IRELAND. I was so depressed and so tired but most of all I felt so alone. I kept reading everything I came across on the internet about Morgellons. I was beginning to get the picture. Oh, it was worse than I thought.
It wasn't just that Morgellons was an unrecognized disease (still couldn't figure that out) but from what I was reading on the internet, I gathered that there was an opposing force. Why, I thought, would these professionals, who had never seen me or the thousands of others, declare that Morgellons doesn't exist and add to that - you all have a mental disorder!
I tried to prove to myself that I didn't have Morgellons. The more I learned the more convinced I was that I had Morgellons. I didn't want Morgellons - or anything else. I wanted to go on my trip and resume my life. I didn't have a clue how to deal with an unrecognized illness. I got the picture pretty quick. If you bring up anything about Morgellons with a doctor or try to explain what is going on, you get a diagnosis all right - DOP - No thank you I don't want to deal with that on top of this Morgellons thing. So when I went to the doctor I concentrated on my non healing lesions. I thought for sure my doctor would be alarmed because after all that is a serious symptom of many diseases. Nobody was ever concerned about that fact. One visit to the doctor after trying the gambit of pills, ointments and basic tests my doctor asked: "Patti, are you filling the prescriptions I give you?" I answered, "Of course I am." Next question; "Are you taking the medication?" Everything went through my mind all at once. He let me know what he was thinking. I was hurt, shocked, and embarrassed all at the same time. On my way home I got mad.
I got involved in Morgellons issues and eventually started calling other Morgies. What a wonderful opportunity this gave me. I have talked to people from all over the US. Morgies needed to talk. Nobody had listened - sometimes for many years. Nobody had understood what they have been going through. For most, I was the first person with Morgellons that many of them had ever talked to. I understood that because, not too long before, I had talked to my first person affected with Morgellons. It can be a very lonely place, waiting, waiting, for someone to listen to us. Waiting for something from somewhere to help us get through our daily lives and give us a little hope. So I say, reach out to others, reach out to other Morgies and get involved. It is very rewarding and everyone has something to offer. We need each other to get through this experience, we understand each other like nobody else can.
- Patti Nash
January '07 - Sidney
Truth be known, my friend, Sid, has a hard time talking about herself. So, I told her I'd do my best...
I remember hearing about 'Sid' the first day I heard the word 'Morgellons'.. I chose this picture of her, to show the beauty and the determination of this awesome lady. Prior to this photo being taken, she had removed her make-up. I call this pose "Stoic Sidney" and as you can see - she's beautiful; with or without make-up..!
Sid has been involved with this cause for far longer than most of us (she doesn't know that I sometimes refer to her as the Godmother of Morgellons). Always researching her condition and looking for answers, she was there for the first Oklahoma study and she'll be there for the next Oklahoma study. Having weathered the storm of this disease for so many years, she's not about to throw in the towel now. Far too many of her friends who started this battle with her... are no longer with us.
In her own words, "Deliver us from Evil!"
More important than her research, support and activism is Sid's family. A wife, mother and grandmother.
Her loving and supportive family is what keeps her going.
December '06 - Brian Shimek
I'm going to try and keep this as short as I can. I don't know how long I can fight this thing... well, at least by myself. I've been dealing with it now for more than two years and I have pretty much lost control of staying ahead of it. So lets get to it:
In late February or early May of 2000, I was spending alot of my time at the bay. I was attacked by thousands of fleas. They seemed to just attack me like a swarm of bees. Biting and crawling all over me. I dashed outside and began slapping myself all over. Yet I was the only one this occured to. I went and got some permethrin and began wiping it all over me, it burned like hell but it seemed to get rid of the flea sensation.
As the days went by, two or three or so, it continued, this crawling, biting, wierd sensation stuff. I finally went to the doctor in El Campo, a woman P.A. The days prior to me going there, I had already tried to figure out what these flea like things were.... I researched on the net and all that... and I believed them to be either fleas or scabies (EEWH !), or some sort of parasite. At the time I had a few boo boos around my shins and ankles and it appeared these "things" were laying on top of the existing lesions. And I had already gotten me a magnifying glass and flashlight and began gathering these things up. Everyone was skeptical of what was happening to me, and still are.
What I think I'm dealing with has been called "Mogellons Disease".