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MY SAD STORY ABOUT MORGELLONS AND UNRECOGNIZED LYME DISEASE

Here is my sad story...

All started when I had for many years terrible joint pain in my knees. I had two torn minis uses in both knees and had surgery to repair the torn minis uses. This alleviated the pain but the doctor said the arthritis was so bad in both knees that because of the loss of cartilage I needed knee replacement surgery. By this time I couldn't walk up or down steps without help and the pain kept me bedridden and I didn't walk much.

I knew I would die on the operating table if I had replacement knee surgery because at this point after having retired I became chronically I'll with vomiting, nausea, poor or no appetite. If my husband hadn't made me a protein drink everyday I would have died because I had lost all muscle mass and lost 30 pounds. I knew I had candida albicans and had testing done for 400$ by a naturopath to test the vitality of my cells.

Out of 100 being the highest my vitality was 5. I was totally infected in every organ with candida and was completely mineral and nutrient deficient. I tried to go on her very demanding protocol of vitamins, herbs etc. but couldn't keep it up. Then we got bed bugs in NY. We spent 5,000$ to try to get rid of them but unsuccessfully I kept being bitten for two years. One morning I woke up and found strange black particles on my bed. I thought they were some kind of bed bug eggs. Then the sores and biting and crawling sensations came.

My chest and legs and back became covered with lesions that hurt like glass being pierced into my body. I thought at this point that it was mites. No exterminator deals with mites do we finally found a laboratory that tests the samples you send them. This was after 2 years of terrible pain and suffering. The worst part of the day was starting at 6 pm when they would start biting ferociously. I washed the floors and walls down with chlorine bleach every nite to try to get rid of them.

Nothing worked! Finally when we got the sample results back the lab said they were inorganic material, not mites. I went to my friend at the health food store and told him I had been to dermatologists who also did a biopsy and didn't find mites but gave me no help. A doctor in the emergency room threw me out of the hospital when he took me into the examine room and he then got bitten from something on me. He simply kicked me out of the hospital. Anyway a health food store owner said maybe it's Morgellons. I went on the Internet and it was suggested that I buy a 10$ handheld microscope from radio shack.

I did and what I saw under my skin scared me to the point of wanting to kill myself. I saw all the pictures you see on the Morgellons websites. The blue and red fibers with silver tips. Silver colored skin underneath. Bunches of fibers over white diamond shaped objects. Everything. I went on Carnicom's site and read his 65 page thesis of how Morgellons meets the criteria for a disease that eventually kills you. At the end of the article he lists the five steps that finally lead to death and he said in his paper that there is no cure!!

What a dude, how can he claim such devastating things? He is not even a scientist or physician!!

I thought there must be some cream to help ease the pain from the sores and lesions and discovered about DSP cream. Couldn't find a place to buy it in America but found a site in Germany from Marc Neumann. I ordered the cream and other remedies from him and on the top he emailed me back to get Lyme testing and even gave me a list of a doctors in NY. I found one who took Medicare in Mt. Misconduct, New York. I got an appointment immediately and sent for the IGENEX test from Palo Alto in California.

My test showed positive for three bands on the Western-Blot and several indeterminate. But even before the tests came back my doctor put me on Doxycycline immediately. Previous to that I was experiencing shortness of breath, terrible chest pains, tachycardia , panic and anxiety attacks, brain fog, memory loss, insomnia and chronic fatigue plus the swelling in my knee joints and ankles. Well, very soon after taking Doxycycline my chest pains stopped. I no longer had tachycardia, no panic attacks, I could go up and down steps almost normally.

The pain in my joints and the swelling in my knees went away (without any surgery!) and since using DSP cream my skin has cleared up to the point where I don't have to bathe 5 times a day to get some relief. My skin doesn't hurt anymore. There are still scars from previous damage but even they are getting better. Marc has literally saved my life by coincidence because I was crying from pain for two years with no help and I thought I was going to die.

I already called my family and friends and said goodbye. Bought a burial plot and even contemplated suicide since I had no more quality of life and did not want to do anything. I was ready for a nursing home where at least they would prepare meals for me. I had become a total recluse never going out, not returning phone calls to friends or family, a big case of malaise. Oh I didn't tell you the worst thing, after spending thousands of dollars on. Enders and gum surgery, very very painful. Everyone of my teeth became infected at the gum level and had to be extracted one by one.

Then I couldn't talk or eat. Lost so much bone that I could only and still only wear a top denture. So no more eating meat or apples. Communicating without teeth just exhascerbated my inability to eat or talk making me even more isolated. Isn't this a great story? If I had just 10 years earlier the information that most of my symptoms were actually related to Lyme disease, as Marc told me, I still would have all my teeth and more....

Well, Marc also gave me hope that I wouldn't die from Morgellons and I did read his website and bought nutritional supplements started doing Rife machine treatments, taking herbal detox remedies and I am feeling almost normal, almost, again. Have become interested in life again, started writing my memoirs, communicating with many people through email. I don't like Facebook at all. I prefer my correspondence to be intimate and private. I started going to health club sauna and steam. As you can see I am feeling hopeful that I will live and I want to do so many things that I can't keep up with myself. With Clifford Carnicom weird claims I just lost all hope before having had contact to Marc!

I still have chronic fatigue and terrible insomnia. Nothing can get me to sleep. I worry about this the most. How long can one go without sleep? I've tried everything and am now using Andrew weil's meditation and breathing tapes. This will take time and patience. Many people with Lyme have insomnia, particullary when using antibiotics in the fight. I have started taking coffee enemas which I love and I read someone's Lyme battle story where the coffee enemas help her sleep. They do make me feel relaxed.

I don't know how long I have had Lyme disease but I read that it causes miscarriages. For the first ten years of my marriage I was pregnant 14 times and always went into premature labor. Even after being bedridden for 9 months I had a baby girl who was born in the 29 th week and after having a cesarean, she lived 10 minutes and died due to premature lungs. That same year I was pregnant and carried 27 months and went into labor again, this time it was a boy and he lived 12 hours, but died also from premature lungs.

When I look back I think was this all due to Lyme disease? There was nothing wrong with the babies, no any abnormalities I just couldn't carry to term and my doctors could find no reason with my physical condition. I had many many treatments, exploratory exams and testing. Nothing! I'm most angry at Lyme and uneducated doctors if it was because of this.

Well that is my sad story, sorry for writing so much. Maybe you can relate to some of my history. I also had mono in college once and Epstein Barr once. Otherwise I was healthy, a big athlete and bike rider and marathon runner and swimmer. My downfall started 7 years ago. If you want to contact me send an email to Marc, he will forward it to me. Just let me know what you have done about Lyme testing and nutritional supplements and so on...

(Barbara, NY, Brooklyn, August 2012)

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