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Post by overandover on Jun 30, 2009 20:12:31 GMT -5
I'm going to try and post a few of the bugs that came out of my hair as it fell out in one day from the chemo. I'm shocked because I thought this was in the past, but happy most came out dead. Love, Suebe
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Post by overandover on Jun 29, 2009 22:28:14 GMT -5
Wooh I'm pooped, tried a few times, had to go get Katina to help me. We got it, we think. Will post more later, Suebe
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Post by overandover on Jun 29, 2009 22:23:44 GMT -5
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Post by overandover on Jun 29, 2009 22:19:09 GMT -5
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Post by overandover on Jun 29, 2009 22:04:40 GMT -5
Dear Ruth, Thank you so much, I'm not a well spoken letter writer but I feel like we need to start making some noise. We were promised some answers and as of yet, got nothing. I'm happy to have my doctors now put Diagnosis of Morgellons in my chart, but do wonder if they are doing it to cover butts.
I don't feel at ease talking to them about it. I thought the bugs were a thing of the past, boy was I wrong. I've saved all my hair in baggies and with my new very white clean tub and sink the black spots jumping and falling out of my hair was very easy to see.
I went in to brush my hair, had been losing more then the normal Morg. hair loss we have. On that day every time I put the brush to my head a clump of hair came out so I started just grabbing clumps of my hair and tossing it in the clean, dry sink and clean dry bath tub, then I saw the jumping black specks coming out of my hair so I pick it up and shook it, OH Dear Lord there was so many, most were dead but a few of the springtails were still jumping so for many painful hours I wet the tip of my finger and gently got them out to put in a jar.
I kept my hair to see if more come out, also tons of fibers, I'd also been under the illusion that I no longer had the blue, black or red fibers, only the clear and white one's, boy was I wrong, tons of fibers came out with my hair, it was a very long, heartbreaking day and it took me two days before I could get myself to take pictures of them so that I could tell just what it was.
I start my next four days of chemo. tomorrow, also will be having double dose radiation. Radiation at 9am Then on to chemo. after that for four hours. After chemo. back to radiation for a second time. I will do the radiation for 15 days and not the normal 30 because they want to hit it fast and hard, as do I. My biggest concern is should I take my bug pictures and the little vial of bugs with me. I'm more scared of doing that then the therapy. I just find it so hard to talk with doctors about it now, don't even trust them one ounce even though I have the proof. I fear they'd look at the pictures and comment bull$hit And refuse to put the bugs that look like specks with out magnification, so will they end up with that DOP crap again. I couldn't take it, it would be too much to go there again, I can't.
I plan on posting all my pictures on the picture section here on the board. I've been so tired but I need to get that done.
Thank you Ruth for your love and support. You are such a good, smart, loving, kind lady. Mostly I see you as strength because every time I see your picture and remember back when my skin was just like that, I cry, I cry because I feel the pain you suffer. I cry because none of us deserve this. I cry because I feel like we are the forgotten.
I'm going to try and post a picture on this post tonight and then I'll do the rest later. I'm so tired lately, just pooped.
Thank you so much for your support. I love you, Suebe
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Post by overandover on Jun 29, 2009 21:24:42 GMT -5
Kiki and friends I'm sure he had a reason for picking you Kiki, it's something we will figure out in the future, I'm sure. I know you must be such a loving soul because he was so drawn to good folks and he loved so big with his over sized heart. I wish all of you could have met Joshua, he was everything I tell you and more. He was all heart and feet and my beautiful boy. His first sweetheart of five years came over the other night and we sat and talked for hours. They were no longer dating when he pasted but he left such a beautiful mark on her soul and he taught her how a girl should be treated when she's loved. One day I'll have to tell you about their breakup and you'll understand just why it left such a mark on her soul. Kiki I will hold you in my heart forever and will never forget the gift you gave to Josh and myself. You are so loved and for the rest of your life you will know that we love you, we will always let you know that and I want to be there to hold your hand in every dark moment you have. But more then that I want to be there by your side to see the sunshine on your face and the smile in your eyes when you are at last free of Morgellons. I will share those moments with all of you, maybe here on earth or maybe from the upper-room but I'll be there because I love all of you so much and will never ever forget the true friends that I went to war with, you all have always had my back. The Lord gave us the best. I'm so pooped, going to bed, love ya's Suebe
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Post by overandover on Jun 26, 2009 18:41:02 GMT -5
Hey Ant Sweetie Pie, Bannanny needs your help. We love ya, Suebe
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Post by overandover on Jun 26, 2009 18:39:08 GMT -5
It's a darn good thing I wear DEPENDS cause I was a sittin in my new chair.
Thanks Bannanny it was so funny we cried.
I love ya so big, Suebe
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Post by overandover on Jun 26, 2009 13:32:13 GMT -5
I can't say this in a private message and I don't think you'd mind one bit that I let everyone know he came through you. He choose you to get through to me, his silly, slow, doodoo Mom. It was him Kiki, the pink flower, it's me. You can share your dreams with the group because I want to get it just right. But yes it was him. I'm sorry I didn't answer you sooner. Last night my daughter Katina, who's home for a month to take care of me during Chemo and radiation, then she's back to Denver for Nursing School, well anyway I'm so darn proud of her and will miss her so much at the same time want her to go. We were talking about your dream, haven't been able to figure out the pink flower, then it hit us like a bomb. IT'S ME, the pink flower. My last Mothers Day that I had Josh here, he gave me a dollar store (he was so broke but still so sweet he stopped and got me a pink rose at the dollar store for Mothers day. It's wrapped in plastic, I put it in the window in my van. Over the past few years it's (the plastic) has turned brown from my darn smoking and I'd thought about putting it in the trash about a year ago when cleaning the car but I just couldn't part with it and it's still down in the window. I don't see it everyday because my van window set's so deep. Tina reminded me that I still have it there. It's me, he's saying Mom I'm OK. Thank you, thank you Kiki for seeing and hearing what I couldn't. You have giving me such a wonderful gift. I love you, love you, love you. Suebe
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Post by overandover on Jun 26, 2009 13:05:38 GMT -5
A letter I just sent to CDC:
Dear Sirs, I have recently been diagnosed with small cell Lung Cancer, have had Morgellons 4 1/2 years. I had a son Joshua who died Feb.17, 2006 from a Glioblastoma Brain Cancer and he was also a victim of Morgellons Syndrome. My son's suffering from the two horrors was beyond anything any human or creature should suffer. Back then most of the doctors called Morgellons DOP, so the suffering was even more profound for my child to be told he was crazy rather then very ill. I don't think anyone could ever understand the suffering he went through, now I walk the path of Cancer/Morgellons but my doctors so far have put a diagnosis of Morgellons rather then crazy to ease a bit of my pain. They seem to believe me but yet I think I may have a post traumatic stress disorder from the treatment I received from my doctors 4 years ago and I don't feel at ease discussing Morgellons with them. My hair just fell out from Chemotherapy. 2 days ago, all at once, with it came the millions of red, blue, black and clear-white fibers and springtail's, spiders, ants, dog scabies, human or dog lice we, with Morgellons, have come to know. I know losing hair for a woman or man is very tough during chemotherapy and radiation which I start on June 30th along with more chemotherapy, but to have the bugs and fibers coming out of your scalp is a torture beyond words. My beautiful child lived this torture, he did not deserve this pain, there are many children out there with this un-known horror, trying to come to grasp with the disease, parents that don't understand and doctors who still carry the stigma of (It's all in your head) and dump drugs in their poor broken bodies. I have no doubt that Autism, All of the Hyper-Active Disorders and yes now Cancer has something to do with Morgellons, as I'm sure you folks at CDC have by now heard many people with Morgellons are being diagnosed with cancer. Many of us have Chronic Fatigue, Chronic Pain disorder from Neuropathy, MS, and many disorders where we were told by you from CDC through Mr. Dan Rutz were conditions that would not kill us, so maybe you felt no rush to get answers for us. WE are dying now, please help us I beg you. I have lost so many friends from Morgellons Syndrome, I've lost my son, a young man who could have giving so very much love and kindness to mankind is gone. I beg you, help us, please tell us what was found in your study, you promised answers for us, now I feel you have really let us down. It was not just a way to keep us quiet for a while was it? Please don't let us down. Thank you for providing this e-mail address for us, please let us know what you have found. Sincerely, Sheila Sue Laws, Gaithersburg, MD
I love you guys, Suebe --------------------------------------------------------------------------------
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Post by overandover on Jun 26, 2009 10:54:46 GMT -5
JILL I'M SCREAMING AMEN GIRL, AMEN AND LORD HELP US TOO. We have to return to A SIMPLE WAY OF LIFE in order to save our planet for our babies, all of us with Morgellons know the horror and truth of it all. It's not just us, Tom comes home daily telling me about the stories of folks with cancer, he's not had ONE customer that has not been touched by cancer, the children, my dear LORD so many children. We did it with all our high tech. crap, we let this happen. Think of when we were all kids, yep now and then we heard of someone with cancer, but not everyday. Josh was 17 when he first got brain cancer, with in a three mile radius of our home 15 children had come down with brain cancer with in a few years time. They never found out why? Bull chit, it was no coincidence. I think it was Morgellons, always will until I get proof it was something else. OK my rant. We have to put a holt to the madness, somehow, someway. We just lost 9 folks on the Metro Train here, Because a circuit malfunctioned. They better remember that when Bin Ladin is hiding his sissy a$$ up in the Mountains, he always has his lap top with him. If they can find a way, and they will !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! We will be taken down when they mess with our computer system, we have each and every part of living life on them. We better put the brakes on all technology for a minute. We better let our live stock out of those torture chambers they are forced to grow in just to become sick from stress, then fed to humans. We better find out why our BEE'S are dying and fast. My thoughts are Morgellons there too. We better fix the harm all this chit they have sprayed on our soil so that we can start growing our food. Organic my a@@, there is no such thing with the BT seeds. Monsanto needs to just GO TO HELL in a non fire proof basket. And all this medical technology is killing us. A few causes of cancer, lets see. Radiation Toxic Chemicals now they say Fungus. And what do we turn around and treat cancer with, lets see. Radiation Toxic Chemicals and yes my Oncologist tells me they are now using Fungus to treat some cancers. It just sickens me. We had to have so much more, be so greedy, look for the easy answers. when God gave us such a beautiful world to begin with, in just 7 days he gave us all we could ever need. And we did this.
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Post by overandover on Jun 18, 2009 12:04:57 GMT -5
Toni my lawyers doctor said she believes it to be a virus by the way it behaves. I don't know what treatment my lawyer did but I did see her about two weeks ago and she was very upset as she'd been doing well enough to return to the office and few days a week (had to work from home for a long while) and showed me and Tom new lesions on her arms, hands and the cuts all over her finger tips. I'll ask her about treatment the next time I see her, I wonder how doctors would treat it as a virus? Anyhow wanted to let you know, cause your always on the path and I call you Dr. Toni around these here parts. Love ya, Suebe
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Post by overandover on Jun 16, 2009 20:16:57 GMT -5
Oh Lord Kiki sweetheart I so hope not one word I said may you sorry you spouted off. You are sick, you are hurting and been let down by our country and I'm so very sorry for that. And you are to sick to be your own doctor, Morgellons is the horror of man kind and the way we have been treated is a crime against humanity. I am so sorry, please forgive my writing post and not thinking.
More then anything in the world I want answers for this, what ever this is took my child and I want answers, NOW.
But I can hardly bare to lose another one of us, Roberta was to much and the last straw for me.
Someone once said to me they were surprised no-one with Morgellons had gone postal. Lord help me and forgive me my feeling, but I though about it.
I want you to know I understand your pain and would help you in anyway I could, if I could I would pay for everyone here to get a BIG screening for cancer and I pray to God to please help me find a way to help find answers for everyone.
And when you need to vent girl, this is the place. There is no better group of folks in the world then the ones on this board.
Hell even when we have misunderstandings here, it comes full circle to the true grit for our love for one another. We are family and you are so loved.
Love, Suebe
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Post by overandover on Jun 15, 2009 12:39:57 GMT -5
Kiki I sure understand your concern about being told right away, the suffering is just to much, but I do want to share my concern.
I too was treated very aggressively and I'm doing so much better with symptoms, in fact I only have three very small unhealed lesions and only one symptom left and thats my hair still produces the tiny white fibers, although they don't itch or re-enter my skin. I only feel the crawling sensation when i pull out a ugly fat chin hair and then with in 3 seconds i feel it. By the way gang I figured that one out. I have always after pulling out one of those fat hairs immediately looked at the hair with my loop or what ever i was using at the time, digi, loop, microscope.
So wondering why I felt that and sometimes seeing that very small white fiber hanging on to the root of the hair or coming out of the root it self after a few mins. of drying, I decided to watch the hole on my face where I'd pulled out the hair and sure enough sometimes they come off the root under the skin and then with in seconds they wiggle their way out to the surface and are on my face, once there I've seen them jump and then i feel them on another area of my skin or they wiggle away and i feel the crawling, they move almost like they are magnetized, sorry it's so hard to find the proper words to describe the hell we feel. I have pulled out hair on my head by the root and sometimes have those small white fibers attached to the root are very very long like over a inch.
So now I wonder do they mature and change to the blue and magenta colors under the skin? do they turn black as they age? I wonder that because sometimes I see see a faint blue or red color starting in some of them, so are they aging?, growing a protective coating? So many question, no answers.
Sorry I got off track there folks, ya know I do that.
I have been torture FREE for over a years but I do know i still produce the small white fibers, but I've seen none mature so to say. But, I won't call myself cured until I stop making theses fibers
I was on high dose antibiotics, doc. changed the type of antibiotic about every three months, was on doxy though about a full 6 months and then Rafampin (sp) about a full 6 months or more, hard to remember. At the same time I was taking all three of the parasite meds, some every day for a few days, then monthly, some once a week, some every few weeks. And at the same time I was on the fungal medications and he changes those every few months also depending on my symptoms. Also at the same time I was on so many herbs, vitamins, Nutra Silver, so many different things, I was on a very high dose regimen and used to tell him it felt like chemo. Well as of this week and having chemo. for the first time three days last week I'm here to tell you, so far the chemo. has been easier then the Morgellons treatment, by far, so far, may not be saying that in the few few weeks though.
Now HERE is my concern, and don't get me wrong I WAS HAPPY TO BE A GINNY PIG, very willing, I thank GOD for that doctor and always will, he saved my life, BUT To this day we don't know what made me better, I was on so many things so how could we know?
You know I was starting to get a bit of relief after I found this board, long before I found a wonderful Doctor willing to go at it hard because he suffered from it also and took all medications himself before treating me, but still we don't have answers to what really did the trick.
I was getting relief from John Blue Sky's protocol and pretty much remained on it. So maybe that did the trick, who knows. I do know cats Claw is the bomb and everyone should take that.
And the Menthol crystals I know runs them out of our homes.
I get concerned when the researchers (God Bless Them) give out the information before the proper channels, (like peer review) Most of us don't have doctors willing to treat, not even treating the symptoms is mean and cruel but they don't. I think they just want us gone and the fastest way to do that is DOP, gets us out the door and fast. It's all about the money sister and we take to long, the symptoms are too bazaar, they don't know, don't want to know unless it means BIG BUCKS. And I hear way to often that folks are taking meds. ordered from Mexico and a far, taking meds. for animals and worse.
I worry sick one day we will lose someone from a over dose of horse paste. But I sure understand why they do it. The suffering is beyond horror and no one gives a damn. Doctors know this is all to real, the word is out thanks to MRF and our dear late Ken Coles (sp, sorry Ken).
But still we don't know for sure what this is, what are those fibers? Yes we get the infections, Lyme, Micoplasma and so on. And we all know that fungus is involved, very involved. But the fibers, why? what? And I know I had the fibers long before the full blown symptoms and I think we grow the insects under our skin because we send out the fugal smell that attracts them to nest on us. But I know nothing for sure.
There is so much good information on this board for relief, not cure for sure but great relief. I urge everyone to do what works for them until we get firm answers. It's so so hard, the waiting.
You know I ask my Oncologist a few weeks ago why our immune system won't go after cancer because Cancer is sure not a normal cell growing and I though our immune system went after things it doesn't recognize as normal. He said thats why people get cancer in the first place, the immune system falters and we don't know why. I said you just described Morgellons, he looked at me sadly. He says very little about Morgellons to me, but seems to believe it's real.
By the way the diagnosis of Morgellons is all over my charts now. My oncologist, lung doctor, surgeon, Neurologist, all of them have Morgellons listed under all medical histories.
Now I call that cover your butts, but I'll take it.
I love you guys and pray the answers come today. I miss you all to, will stop in and keep in touch. Love, Suebe
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Post by overandover on May 21, 2009 17:29:33 GMT -5
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Post by overandover on May 21, 2009 17:06:08 GMT -5
Toni Sue you are such a cutie pie and a very smart lady also. I did try it, but silly old me left it in the freezer to long so it was solid when i took it out. Had it all staged too, Tom was standing there and I told him Morgellons had giving me the power to do magic. So I took it out while saying "I can touch a bottle of water and make it freeze with in a moment" Didn't know it was all ready frozen solid" as I uttered those words. He carefully looked at the bottle and smiled, said yes dear folk's have been freezing water for years, call it ice cubes, yep you done good. I felt real silly and told him about what had happened to you yesterday, am. He got a good giggle out of it and said he imagined you did freak out. Said he'd heard of it before. Sometimes I just get no fun He just called me over to his computer to see something, un-related, but funny, we need all the funny we can get ;D I love ya like butter and i love me some butter. Suebe www.youtube.com/watch?v=DqY7b4JpJMw&NR=1
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Post by overandover on May 21, 2009 16:46:54 GMT -5
Bump
Thanks so much for posting this great information Niels, have been wondering what happened to Dr. Klapow.
Love, Suebe
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Post by overandover on May 20, 2009 13:03:43 GMT -5
OH some fun Toni Sue, just went up stairs and put two bottles of water in the freezer, gonna play a little trick on Tom, he'll think Morgellons has giving me magic powers, hee hee.
Justhanginin I'm so glad you told us about that and I have to tell ya ladies I've been guilty of doing that for the last 15 years. I even pore out 1/2 bottle of orangekist into my used water bottle every night so the next night it's frozen and I can microwave just long enough to make a slushy. Well look at me now, starting treatment for cancer next week.
Please heed what she said about that ladies. So many things can cause cancer now a days, who the heck thought of plastic bottles in the first place, I use to love drinking my coca cola's in glass bottles when I was a kid. Oh my gosh with a drop of vanilla in it and a plate of French fries, gosh I wish I could go back, never pick up a damn cigarette, never put any food in plastic, so many things I'd change.
So many things I'd love to hear my friends here change so that they are one day sweet old folks, sitting on a swing and remembering that silly long winded Suebe, I'd love that.
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Post by overandover on May 18, 2009 12:11:46 GMT -5
Has anyone heard at all if they plan to release some information anytime soon? Thanks, Suebe
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Post by overandover on May 18, 2009 12:09:35 GMT -5
Toni and Barb, that's it, that the stuff I get out of me and Josh had burst out of his arm, I have some growing in my bathroom cabinet in a little container right now, will try and post pics. later as i have to get ready for a doctor's appt. now, OH my gosh the very same thing, turns completely black. If I can't get pics done, may I send to you Toni?
Love, Suebe
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