Newsletter
It was 1997 when I realized something wasn't right. I had led a very active life up until that point. I kayaked, jet skied, did lots of playing in the S.F. Bay and deep sea fishing had become my exciting new hobby. That very year I had been on a Caribbean cruise with a bunch of nurses and I had also taken a trip to Ireland and Holland. This was my 7th yr in the ICU and I switched to day shift thinking that night shift must have finally taken it's toll on me.
First was the profound fatigue. I felt like I just couldn't get moving. If I did get moving, I couldn't stay moving. I was just so tired that it became a big deal just to muster up the energy to go to work. I slept a lot. I thought maybe I had been so sleep deprived over the yrs from night shift that I just had to catch up. Sometimes I would sleep up to 18 hrs a day for several days in a row and still feel tired. I felt like I had a fever but I really didn't. Sometimes it would hit 99 or 100 F. but never did it get high. I continued to try to ignore this and blame it on other things for a long time. A lot of times I just felt too tired to think. The inability to think was the most frustrating. At one point I remember calling mom (a nurse) and saying "I know something is wrong but I have no idea how to explain it to a Doctor without them thinking I'm nuts." I was trying to think of every possible explanation. I even asked mom.."Do you think my hip joint could be getting septic?" My hip had caused pain all my life and it had gradually increased in severity over the yrs which was expected. I didn't give much more thought to the hip at the time but I did decide that I wanted it replaced as soon as I found a surgeon and got in good enough physical shape to do so. Weeks and months went on. My friends noticed I was tired, no stamina, couldn't think or communicate as well as I used to.
During this time I remember having some odd dreams. I lived in a shabby apt. on Bridgeway Ave (the main drag in Sausalito). I remember 3-4 times while I was sleeping so much having a "dream" that something was crawling on my legs. I remember how real it felt as though rats were crawling on my legs. I woke up frantically checking my legs and never saw anything. As you know, Sausalito is on a steep hillside by the water. I had seen rats on the carport and even inside my apt. before. Decon is always in use in Sausalito. You also know how it rains in Ca during the rainy season and the ground does not absorb water well. My apt, being on the hillside, flooded every winter from the water run off. I lived with major floods. One time I had a river running through the living room and no way to stop it. It soaked carpets and my land lord hung the carpets out to dry and put them back in my apt. I didn't really care because hey..it was cheap and I had been there since I987 when I was a nursing student.
Time went on and the fatigue was bad. The fatigue got much worse in the evenings and a very slight sore throat accompanied it. To this day that feeling comes back occasionally but back then it was every day for months. Then I developed the strange sores on my face and frontal scalp. They were ugly (now I know a morgie lesion anywhere). I lost a lot of my hair. The fatigue got worse. My mind got worse in that I couldn't focus on anything, got easily frustrated and agitated. I felt too tired to think. My face and scalp got worse. I had severe emotional and behavior problems in the relationship I was in. Went to my PCP and at first he thought the lesions were shingles. They do bear a resemblance. Made a few trips to the doctor but nothing really came of it. Once they cultured some staph. aureus. I do remember once that my PCP looked at a lesion on my nose with an otoscope and called in another doc to look. They didn't say anything to me but I know now by the look on their faces that they saw the fibers. They did test me for lupus and other auto immune stuff. I was first referred to a CPMC derm who seemed angry at me and kept asking "What's going on in you life?" That was weird. Then I was referred to a UCSF Derm, Dr. Conant, nice guy, dx'd me with folliculitis and staph infection. I saw him for about a year .
At one point my mom and sister got concerned about me and came out from Mo. for an intervention. They were shocked at the lesions on my face and scalp. My sister went with me to my PCP and he put me on antidepressants. The fatigue continued.
At one of my Dr. visits I insisted they draw a TSH. My TSH came back higher than they had ever seen. So I got on Synthroid thinking that would help my fatigue. But it really didn't help. Currently I'm on a 0.175mg as I have titrated according to my TSH.
During all this time I noticed I felt better when I took Keflex. Doctors didn't like prescribing it so I would get it at work because it made me have more energy. I also like Cipro, but in the beginning, my drug of choice was Keflex. I definitely developed antibiotic seeking behavior. They helped my lesions and my fatigue.
Sometime around 1999-2000 my lesions were gone. I still had fatigue and the sore throat feeling a lot but I felt good enough to get my hip replaced in 2001. that's when I met Charles and fell in love. Although I never brought it up, he noticed my fatigue and sleep problems and he was worried. At that point I wondered if I had sleep apnea. I even went to an ENT Doc and he took a look with a scope and said I didn't have sleep apnea.
By 2002 my skin lesions began to return...itching like crazy on my legs. Unbearable itching episodes! Crawling sensations! I was reluctant but Charles insisted that I see a Derm. So I began to see CPMC's Dr. Tufanelli. Saw him for over a year as he waited to see a primary lesion. He thought I was just scratching too much. My lesions got so bad on my legs and back that I just could hardly take it. We got married in 2004 but I had to have a lot of make-up on the skin lesions and we had to defer the garter episode since my legs were ate up.. One week after our wedding my friend called and said to watch the KTVU news that night. We watched, the next day Charles bought a hand help microscope and we both without a doubt that what I had was Morgellons. I registered on the website and indicated I was a nurse and Mary set up a time for me to call her. I took the literature to Dr. Tufanelli thinking he would be excited. He rolled his eyes and shook his head and gave me a referral to Dr. Koo (King of DOP).
I remember feeling so weird about our conversation. She was talking about Lyme Disease and I was so confused about everything. Weeks or months went by (weeks I think). I became desperate...very desperate...I had to get some help. I told Charles "honey, I love you so much and I love our life and our future but I just can't live like this." I was so miserable in my skin that I stayed wrapped in a sheet. Cried all night a lot of times. Charles was so supportive.
In June, 2004 we drove to Austin, TX to see Ginger Savely. Alas, she validated my symptoms, had seen it before, and above all she was very kind and understanding. I got Igenex Lyme tested and went on Lyme tx. My lesions got nothing but worse during my Lyme Tx. Charles gave me IM Rocephin but only 1 Gm QOD. Looking back, I think that dose was like pissing in the wind.
I think you know most of the story after that. I began to seek help at my own hospital. Went to two ID docs, more Derms and finally got a referral back to UCSF's Tim Berger. Tim Berger and I finally developed a good relationship after agreeing to disagree and I still keep him updated on our progress. Some of my nurse friends write that they continue to harass the ID specialist that told me it looked like self-mutilation. The people I worked with believed me. Some of them saw it first hand. They had known me for so many years that they knew I would not bullshit about something like this.
I was hoping this wouldn't get so long but I couldn't help it. I'm sure there is more that I have left out but I will fill you in as I think of it or as you have any questions. I used to cry a lot but these days I have found a level of acceptance and an ability to deal with it. It helps me to be able to help others.
Cindy
P.S. You can read more about the early days in the Diary.