Post by unfortunatefamily on Jun 7, 2008 5:30:06 GMT -5
Greetings from Western Oregon. Me (26), my husband (29), and my 3 children ages 4, 3, and 1 have recently self diagnosed ourselves with Morgellons. We all had symptoms start within 12 hours of each other. Is it common for an entire family to catch this at the same time? I have no doubt this is it, as we have just about every symptom. It started out as what appeared to be glittering sweat. Our skin glistened with tiny sparkles. Then our scalps began to get red and swollen, then we broke out in what appeared to be pimples appearing in several diff. locations on our bodies. Although I was very curious as to why my kids had pimples, I chalked it up to a new sunscreen. We were staying with family for a weekend, we got home at about 11:00p.m. By the next morning at 5:00a.m. my husband and I started to "hatch" something out of our hot, red, swollen scalps. We were freaking out. Me being of calm nature I thought for sure this was a normal thing that for sure my doctor could explain. We hatched several times over the course of the next several hours. It's all a blur to me now, as my Dr. had convinced me we were all crazy (5 of us!!!) I do remember a little about little worms, little white flies that disappeared into our skin, the feeling of insects tunneling through my arms, and brown spots. I don't know in which order they came, all I know is that I felt so violated to have had to endure creatures using me as an incubator. It was so disgusting. By that night we went to the immediate health care center. I was certain this was a medical thing that could easily be diagnosed and taken care of. By that time the only "evidence" you could see of our nightmare was little brown spots all over our bodies including arms, face, chest, stomach, legs, pretty much everywhere I guess. Don't ask me why, but for some reason the Dr. thought it was scabies even though we had it everywhere, you could see the brown spots, and they didn't even itch! Ignorantly I told the Dr. EVERY thing that had happened that day, in crystal clear detail, not thinking of how ridiculous it sounded. The Dr. took my bag with little specimens from each of the hatchings and left the room. He returned with a raised eyebrow. He never told me what he saw under the microscope, but he did send us home with a cream for Scabies. Needless to say it didn't work. We tried another Dr. a couple days later, we had been seeing and feeling things under our skin and thought for sure we had a parasite, as that is what information I had found on the Internet. He said that we just needed to do the cream again and said that sometimes people get so freaked out at the thought of having scabies that they imagine bugs crawling in their skin. I was floored when he said I was delusional. He also said to stop itching so the bites would get better. I had never scratched one single bite. We didn't get better. I could not believe that a Dr. didn't even know the signs of a parasite! I was fumigated. He never once looked at my children or asked them what they felt. After that I turned to the Internet and researched every single parasite I could find to find one that matched our symptoms. I couldn't believe how hard it was. I searched night and day, but still wasn't sure that I had found one that fit all our symptoms. Nothing seemed to combine worms, spring tails, and another creature visibly underneath the skin. Several days later we went through another hatching cycle, this time adding to the list little tadpole things that came out our ears, nose, and lips. As if having the other things come out of every place covered by hair except our legs wasn't bad enough, now we have... what my children like to call...little fishies in our noses. YUCK!!! I finally came across Morgellons and was so excited to see that we had nearly all the symptoms. That is until I read further seeing that it's not curable as of yet. I was floored to say the least and was in total denial searching the web frantically for something else. I never found that something else, all I found we more symptoms, more things hatching out of our scalps, and eventually the Morgellons websites, which have been a very valuable source to me. Several other things have happened so far, It's been almost a month now. I still tried to deny it and it seemed like every time I did it hit me with another symptom. Finally there was no denying the fact of what we had. We just told our families, 1 a day for 4 days as that's all the emotional stress I could bear. Surprisingly enough they actually believed me that we had a mystery illness, they might have thought I was making a bit of it up as it sounds ridiculous every time I tell the story, but none the less they believed me and mourned for us. I've flooded them with information to help them better understand, which is something they could never do without having this disease. I come from such a tight nit family that we would drive 3 hours one way almost every weekend just to see them and so they could see my beautiful children. The thought of never getting to be near them again sends bone chilling quivers up my spine and my eyes swell with tears each time my kids ask when we are going to grandma and grandpa's, or auntie's house. I can't bear the thought of giving this hellish disease to anyone, not even my worst enemy, and especially my family. The hardest part is the knowledge that my kids will never get to lead a normal life, and worst yet that they will have to suffer, and I will have to watch without control. I pray to God that a cure is found before my 18 month old baby girl has to suffer to the extreme. I don't know if it's possible, but so far she, and my 3 year old son seem to not have it quite as strong as the rest of us. Emma wakes up crying off and on through the night screaming owie, luckily so far my 3 year old says they tickle him! My 4 year old(who so far doesn't seem to have as many sores as us) is VERY strong and very tough, it kills me when he says he can't walk up the stairs at night because his legs hurt. I have never heard that boy say 1 thing hurt in his entire life...until now. As for me and my husband, we progress a little every day. Fatigue, short term memory loss, very bad joint, back, and muscular pain, along with my eyes going bad are just a few of the current complaints. I can not believe that such a thing like this exists. Who could do this to our babies, God please spare my babies!!!! How do people do it? I need to hear from some parents of small children for advice in this area. I have no idea what I'm up against. In a lot of the stories I read adults are wishing death upon themselves after 1 year.....1 year!!!!! As fast as things are going I don't doubt that I will be feeling much of the same desperation, but for now I have got to keep a clear (as clear as possible mind for my kids. Does the disease progress in the same manner in children as it does in adults? Do children ever die of this? I'm desperately searching for answers as to what I can expect of things to come for them, and us. I have no idea what to do, or where to turn. What do we do for money. My husband is a carpenter and works in peoples homes every day, there is no way he can contaminate other families with this plague. He's been home ever since we started having symptoms so I pray that these homes haven't been infected. So the question remains, how do we keep food on the table. With the economy the way it is construction was barely keeping us afloat, now we've laid off our employees and our bills have gone by unpaid for yet another month. Today the cable got shut off, luckily I will be able to pay the power company before they do the same. The house is a different story. We placed it on the market 2 weeks before our symptoms started. We can't possibly sell a contaminated house, but we can't make the mortgage either. Does anyone else face these same mentally exhausting battles? If so what do you do? Can we even turn to the state for help since it's not a real disease? I printed out an application and if I understood it correctly it says we have to have been diagnosed with such disease. Is that possible with Morgellons? If so where do I turn for help? We have no health insurance, and even if we did would it make any difference? It doesn't look like anyone else out there is having any luck with theirs. My family keeps bugging me to just "not leave the Dr.'s office until he gives you a skin,blood, and stool, test." They don't understand when I tell them that the Dr.'s don't care and aren't willing to look any further into the matter. I guess I'm just looking for hope, looking for advise on what products work, since I don't have ANY money to waste, looking for tips on how to keep my house and environment clean, and keep my kids as comfortable as possible. I heard that ammonia works to kill them, I've tried it diluted and it doesn't seem to completely kill them. Mu husband is spraying it full strength in the bathroom right now and the fumes are killing my head, will this even work? I'm so tired, but too stressed about the uncertain doom that lurks in our near future to sleep. We've both lost at least 10 pounds just over the last 10 days. Where do I go from here? Who do I contact? And what can I do to stay healthy long enough to take care of my family until a cure if found? I thank you for taking the time to read our story, any comments would be greatly appreciated. Oh, one more thing...Has anyone ever infected someone else at the very beginning before the 1st hatching? I was around family when we had the little sparkles in our sweat, could we have infected them? And if so how long until they will show signs of it? I've heard people say that it takes years to incubate, but if that were true, would my 18 month old daughter have it at the exact same time we do? We just started our second "round" of hatching and they appear bigger this time. How many times will we have to endure this lovely event? My chest is so tight and filled with mucous, I have a horrible cough and the constant feeling that there are large things in my throat. This is the most unfortunate event in a series of unfortunate events that took place leading up to this over the past year or so. I tell people it was God's way of preparing me for such a devastating blow, although I'm not sure anything could have prepared me for this. You have to think positive I guess. That's what I keep telling myself, for the sake of my kids. I look forward to your input.