14 year survivor

[lotr]

Hi everyone.

I'm new to the site but not new to this illness. I won't bore you with my long complicated story because I'm sure it's very similar to your own or you wouldn't be here. I haven't had time to review all of this site yet but I look forward to it.

Please forgive my chatroom illiteracy as I have never joined one before. I will try my best to do things properly.

Grace.

Lotr

[Sadsack]

Grace -

Quite the contrary - we would like for you to share your story, even if you feel it best to abbreviate it.

It seems we learn a tiny bit more with every new person who joins us!

And welcome here....

SS

[carla]

Hi Grace,Welcome to the site.
I'm sure you will have plenty of knowledge to share.
Don't worry to much about doing things properly.
I don't !

[-----------]

Hi Grace, welcome...!

Make yourself at home and tell us story?

[lotr]

I'm afraid I've already made an error.
My name is not Grace. That's my blessing for you all. I corrected my post and signed my user name.

Forgive me.

I'm not sure where to post information about my story.
lotr

[gigi22]

Lotr -

I'm glad you found us. This disease can be so frightening at times.. this website has been a godsend for me. It helps to be able to reach out to people experiencing similar things.

You would not bore us with your story. Please tell! You can put your story in this thread.

I do learn a lot from others, and am always interested in hearing how things developed for other people.

-gigi

[carla]

Lotr,Thanks for the blessing anyway.
As Gigi says you should post your story.
With all we go through with this we need reassuring we are sane and not alone.

[lotr]

My story goes like this:
In 1994 I was the poster girl for health and fitness - 13% body fat, ran 6 miles and lifted weights six days a week. I ate mostly a macrobiotic diet with handfuls of carefully chosen supplements and daily wheatgrass shooters and protein shakes. I was physically and mentally fine tuned so to speak. I was 30 then but looked much younger due to the care I had taken with my diet and exercise. Out of the blue I started having strange symptoms: edema, tachycardia, anxiety, and profound fatigue. I also had very small red bumps on my chest and back that would ooze a very light reflective clear liquid that would crystallize. I told myself that it was nothing, probably toxins released from all the sweating. I thought that I was lazy when I couldn't drag myself to the gym. I thought I was crazy when my heart would race and I felt like I wasn't breathing. (A regular symptom became: suppressed respiratory drive.) But neither was true. I became more and more ill until I could barely work or take care of my daughter. I was resting all the time. I could not tolerate heat at all or strenuous activity. I was having all the symptoms of orthostatic intolerance but I didn't know it yet.
I noticed that my muscles started to tighten up and feel rigid. The muscles in my arms would jerk slightly when I moved. I was tripping. My legs felt so heavy. I was slowing down like a wind-up doll winding down. One night I stopped all together and that was my first trip of many more to the hospital for neurological problems. I was frozen standing up and my boyfriend had to carry me to the car and rush me to the emergency room. I don't remember what they told me but they gave me anti-anxiety medication and ran tests. I was sent home with some diagnosis like "migraine headache with aura". Not long after that I ended up in the hospital again not able to walk at all. All the standard tests were done and all were negative but they keep me for three days and then sent me home with a diagnosis of MS. I was helpless. I couldn't work or take care of myself so I had to move in with my Mother in another state.
More testing and new Drs. found that I had a very high positive ANA titer so they then told me it was autoimmune. No other tests were positive. I was put on hydroxychloroquine and steroids. I did feel better but was still far from who I once was. Years went by like this with no real answers. When my ANA went negative I went off the medications. I got worse. I ended up in the neurology ward at a local university teaching hospital for three days when I could not walk or talk and my reflexes were all over the map! My whole body was shutting down neurologically. Again, no diagnosis. Mental health was sent to my room. I sent them away and went home crying.
More time passes. I'm barely well enough to work. I stay in bed all day on my days off so that I can work. I have no life, no friends, no hobbies. I'm too tired. Then, I had a short period of what I call remission. For several months I felt better. I worked out, went out, started to have a life. Then, it hit me again. My right side was paralyzed, I couldn't swallow, my breathing was shallow, and my heart-rate was very high. I went back to the hospital again and again, nothing. I don't even remember how many times I went to the hospital because it looked like I was having a stroke. My life sucked again.
Then, new symptoms: night sweats, extreme wakefulness, lesions all over my neck, face, hands, feet. My Dr. sent me to many specialists: dermatologists, neurologists, rheumatologists and none could find the cause. I was delirious and suicidal. I had long ago started drinking to cope with the physical symptoms of nausea, Dystonia, pain, and wakefulness. It wasn't working anymore. After about a month of no sleep I went back to my Dr. again. He could not help me. My family was very worried. I took a three month medical leave from work.
November 2006: I found a hard object protruding from my neck through an inflamed lesion. I dug it out. I was horrified. I went on the Internet desperate to figure out what disease could cause something like this to be inside my body. It was like a spider's egg sack and something that looked like a stick and was just as hard. I found the silentsuperbug website. I didn't sleep anymore. I was completely panicked. I knew that after all these years I had finally figured out what I had and now I wished that I hadn't. I was suicidal. I called the mental health line at my HMO. By the grace of God I was on the line with a very kind person who just may have saved my life. He found me a counselor to go to whom he knew personally and knew that she could help me. She did. She believed me when none of my Drs. did. She kept me alive. She witnessed what was happening and wrote a letter to my Dr. She suggested that I see a psychiatrist and get medication just so I could feel well enough to function. I did. She had phone conferences with him and convinced him that I was sane and he believed her. He did help me with anti-depressants and anti-anxiety medications. (I do recommend this to patients with severe illness because we all know that the leading cause of death in Morgellons patients so far is suicide.)
Now, after 14 years I have developed a very thick emotional skin. I've seen the dark side of this disease and of medicine in general. I've lived to tell about it and I'm still working and making it day by day.
I do use a western medicine protocol. I know that a lot of people with this disease abandon this method but I have learned to work the system to get what I need to survive. If anyone is interested in how I cope and what I take I will post in the appropriate thread.
Gigi, you have the right to be scared. I am of the school of thought that this is not a naturally occurring pathogen but a man-made, bio/nanotech holocaust that has been perpetrated on the world either by neglect or with a purpose.
You cannot kill this bug. You can only learn to live with it. Please do yourself a favor and don't do anymore colonics! This disrupts the colony and makes it worse! Do not pick unless you absolutely must as this will do the same thing and you risk secondary infection. Vitamin C will help with immunity and cell repair. Salt is good for helping some of the symptoms of OI. Have your kidney and liver function checked before beginning ANY treatment protocol as this 'bug' will invade all the organs of the body. (I now have a heart condition called multi-focal atrial tachycardia from this "bug".) Use triple-antibiotic ointment in LARGE doses on any open lesions and they will heal faster. Use the strongest cortisone cream you can get on closed lesions to help the swelling. Get sleep! See a Dr. and get medication if you need it. If you can't, use Benadryl. Sleep and rest helps your body repair and fight off the 'bug'. I have found it is the only thing that helps me. Avoid stress at all costs as it weakens immunity and makes you more ill. Go to the Morgellons Research Foundation website and read the latest paper on the publications page. Learn as much as you can. Please take care. I hope that I didn't scare you. Not everyone gets as sick as I am.

Grace.

lotr