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Life With Morgellons - Sunny's Story
From Sunny Simmons
January '08 - Sunny Simmons
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;
--urinary incont.
--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.
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