Ellen - "If I can get better, I believe anyone can."
My name is Ellen. I post on various threads on Mel’s site and on my thread, "A New Warrior from MA".
After getting very sick with Morgellons in August/ September of 2012 and after a year on Mel’s protocol, I can confidently report that I am symptom free. Others new to this disease need to hear stories with a positive outcome to give them hope to push on. I have said this repeatedly - there is nothing special about me. If I can get better, I believe anyone can. Everyone's body is different, so it will take different amounts of time for each of us, but believe that you will get well too. Curing myself of this disease wasn’t easy, but now that I have been through hell, I think I can tackle any health issue that comes along. I'm a different person today – hopefully a better, stronger, wiser person.
I don’t know what initially infected me, but in July of 2012 I got some bites that were very large and itchy, and after spending thousands on pest companies trying to rid my house of insects, I slowly cleaned my environment on my own. I took out my carpeting and now have just tile and wood. In the beginning I washed my clothes, sheets, floors and surfaces every day. I assume that I killed every living thing in my house except for me. Now I can do sheets once a week and can clean the house less often to maintain it. I also ran a dehumidifier and set it at 46%. Supposedly mold and some bugs don’t thrive unless the air is more humid than that.
My daughter, who is a scientist with a PHD from Columbia University, found Mel’s site while researching my condition. My symptoms included: lots of black specks, white, salt-like specks, some crazy colored fibers, low body temperature, a horrible red rash on my neck and chest, tiny, scaly bumps on my legs and ankles, terrible head itching, cuts that wouldn’t heal, large, round bruises and a constant feeling of being nauseous and dizzy. We were both looking at bird mite sites, bed bug forums, everything - but never got to the cause of the infestation. The only thing I found in my house was fungal gnats (identified by one of the pest companies.) I will never forget when she said, “Mom, I think you have this thing called Morgellons." I had come to the same conclusion from my searching online and was terrified. I began to get my documents in order for my family in case I got any sicker.
Armed with information and encouragement from Mel’s site and the community surrounding his protocol, I now had a plan. I went cold turkey and eliminated all sugars, flour, dairy and acidic foods, felt better within a few weeks and dramatically better after starting the Logos Nutritionals supplements and MMS. The reason I started on the protocol and stuck with it religiously was because I was feeling like I was living a nightmare and I had nothing to lose. I knew I couldn't continue the way I was. I stayed close to my loved ones if only by email and phone, and came to a better appreciation of life. I didn’t know, and still don’t know if I was contagious, but I spent a lot of time by myself that Fall. Now I realize it gave me the opportunity to rest, which is vital to getting your health back.
I was lucky I could keep my part-time job, and to have supportive family and friends. I was also careful, however, who I chose to confide in. My PCP doctor did all the tests (blood work, heavy metals, metabolic series) I requested, but then asked that I see a psychiatrist. As a professional in Human Services, I was angry and insulted, but replied in a cheerful voice, "Sure!" I have since changed doctors.
This disease taught me to be patient with others, and we need go easy on ourselves too. To think we have brought this on because of something we did is pointless. I have no idea how I got sick, but because of unknown parasites, and the toxins in our food and environment, I believe everyone is at risk. I was not sick with any other disease or with a weakened immune system, but I did have to go on two rounds of antibiotics that summer for an infection.
I couldn’t sleep in the beginning due to the fear and also due to the constant itching. I got a prescription for Ambien which gave me terrible side effects. I weaned myself off of it after two months, and by that point the itching had subsided, so I was able to fall asleep.
Some things that helped me...
For breakfast I have an egg with an English muffin (Ezekiel flourless) with organic butter and either a detox tea or Red Rooibus tea. I sometimes make omelettes with 2 eggs and add vegetables and a nondairy/non-soy cheese. I alternate that with Ezekiel cereal with almond/coconut milk, unsweetened coconut, ground flax, chia seeds, and cinnamon and Stevia to taste. Sometimes I add berries. Or make a smoothie with those ingredients and add organic spinach or kale.
For lunch I have a salad and I try to put 5 items in each time as well as a protein. So that may be lettuce, peppers, tomato, cucumber, red onion, cabbage, broccoli, avocado, or whatever veggies I have. I add cooked chicken, quinoa, or an egg on top. My favorite dressing is lemon juice, olive oil, salt and pepper. Minute Maid makes a lemon juice with nothing added, in the freezer section of stores and it saves money.
For dinner I have soups or fish, chicken or once in a while grass-fed beef. I like to roast a variety of vegetables with olive oil. I use a lot of onion, garlic, cayenne, curry powder, cinnamon and other spices. I never felt I had to eat raw everything, and I got better with a variety of cooking and preparing. I do try to get everything organic and local, but I'm not obsessive about it. I just do the best I can. I'm kind of an ADD cook, so I never follow recipes but just try to prepare foods I like and adapt them to the protocol. Not always easy, but doable. I have used coconut flour, almond flour and brown rice flour in recipes as well as pastas made from brown rice and quinoa. I think the most important thing is to avoid white flours, white rice or anything that we convert into sugar.
I never used coconut oil in my cooking because I couldn't get used to the taste, but I do use it on my face every day. Mostly I use olive oil to cook with. When I wanted a treat I ate Kind bars - the dark chocolate and sea salt have only 5 grams of sugar and I felt like I was eating a candy bar. In between meals, I snacked on almonds, too. Nuts are very filling. And for more calories, I made guacamole and ate it with chips called Beanitos, also available everywhere. They are made with lentils and black beans, are GMO free and really tasty. I also try to have hummus and tabouli on hand to snack on. When I started to add fruit to my diet I relied on berries and apples. I bake apples with cinnamon and have that for dessert.
I know the foods and supplements can be costly, but here's what I did. I paid the bills I had to pay and got behind in others. I got a loan from a family member. I am still in debt but now I have my health back. Please don't let finances keep you from getting what you need to get well. Think about who in your life can help you, then make a plan to pay them back later when you can. For me, financial support from the He Cures All Foundation was not an option (although I certainly received a lot of loving assistance from Mel), but there is always a way if we are determined enough.
I took the supplements and MMS EXACTLY as described in the protocol page. For the record, I NEVER mixed protocols. If you do, there is no way to know what is helping and what is not. As for the MMS, I never got the nausea and GI herx. What did happen to me is that at 15 drops I got a terrible headache and dizzy and felt like I had to lie down. The feeling that it was unbearable passed after a little while. I was keeping a diary so I was pretty tuned in to my body at that point. I knew I was at my max. So even though the MMS seems scary, I think it is absolutely key to getting rid of this disease. I was fearful of it, but now I know that I didn't need to be.
As for cleaning, I used Borax, Arm and Hammer laundry detergent, and Kleen Green in my laundry and dried everything on high heat for a long time. I sprayed Kleen Green in my car, my boots and shoes, on the insides of my coats until I felt that I had that under control (after a few months). I washed my floor with a Swiffer and some type of cleaner that was non-toxic. I changed these periodically. I showered with Dr.Bonner’s soap and washed my hair with peppermint or tea tree products found in my health food store. After showering, I used unscented mineral oil with a few drops of tea tree, lavender, peppermint or neem oil on my skin.
These are things that worked for me, and I am not suggesting they should be followed by everyone, but I did spend a lot of time and money on a lot of products before I eliminated stuff that didn’t work. I never used Diatomaceous Earth, and think it could do harm.
In one of my first posts I wrote the following quote...
"We should ready ourselves to meet trials: the small and big ones of each day. They are the trials which we cannot help but encounter from one day to the next. It is a matter of realizing that God permits them not to discourage us, but so we can grow spiritually as we overcome them. There are two temptations to which we are vulnerable in these moments. One is to think we can go it alone. The other is the opposite, that is the fear of not making it, as if the trial were greater than our strength."
I am grateful to all of you for your stories. I still read every single post on Mel’s forum, every day. If you don't have the caring support you need from people in your life, know that it is here in this online community.