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Post by janedough on Aug 3, 2007 22:50:09 GMT -5
Sorry, I just needed to get that off my chest. I am sorry for all of us suffering. I want to scream. I want help for my kids and not a gp saying the same ole thing. I want a cure or at least some relief. I am a very skeptical person and I feel that the non caring aholes that are behind this will never let it come to light.
For all of you who have been suffering for so many years, God bless you!!! My hat goes of to you all because I am slowly going insane. My kids are all elementary school and younger and I don't know what to do for them. If I had known life was going to be this way, well, I would have thought a little harder about having kids. They are what I live for and I cannot stand to see them suffer. I am tired of playing pretend with them. I don't know what they will say at school or to friends. I just want our lives back. It is as if our former lives have been hijacked. I am sad, sad, sad and angry. I want to be the cookie makin' mom I used to be. I don't want to be afraid anymore.
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Post by zabrubon on Aug 3, 2007 23:43:45 GMT -5
Jane, I know that life is awful with this disease and I can not even imagine how I would feel with my kids if they had this as little guys. I would just want to scream too. I wish I could take their pain and yours too. I know somedays are better than others, but never great and I am praying that you have a better day tomorrow. I hate this disease and the idiots who gave it to us(i just know its in our food), may their lives be cursed for hurting so many innocent little ones. I will pray for you later tonight.
ChicagoBonnie
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Post by Carrie♥ on Aug 3, 2007 23:45:25 GMT -5
This does suck!!! I've wanted that for so long...just to go back to the way it was...that ain't NEVER going to happen. We will NEVER see things the way we used to see them. Breaks my heart too...my kids have seen and know way to much about something that just doesn't exist in our societies world. Sorry Janedough...I'm so sorry you're so angry and hurt. I wish I could offer you more comforting words of hope and wisdom but I can't...this is our life now...no turning back.
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Post by robertalouise26 on Aug 4, 2007 2:07:22 GMT -5
Dear Janedough I feel sooo much for you and your children try putting epsom salts or radox in their bath even both together. It will help them As far as I know these things hate salt vinegar lemon juice and anything hot and spicy. I know children don't like hot spicy food, give them salty chips ccasionally. Do they eat coleslaw if so see that the mao has vinegar in it. Garlic is also excellent but it could be difficult to get children to eat garlic. You could try putting a little in ground beef or casseroles. Pickles are excellent but then again not a favourite of most children. Sliced cooked beetroot in a mixture of sugar, water and vinegar is quite nice with a salad. I wish that I could tell you more. When you have the time and if you feel like it please tell me how this is affecting your children. I look forward to hearing from you. HANG IN THERE!!! We are all here for you and the children. Love and best wishes. Roberta.
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Post by robertalouise26 on Aug 4, 2007 2:19:28 GMT -5
This is to everyone. I still don't know how to start a new thread. Have you heard of aspante it is a sweetner for replacing sugar. Well it is highly dangerous. It is found in a lot of tinned food and used in nutra sweet equal and things like that. It is often hidden by numbers on the can or packet The numbers to watch for are 651 and 631 and others that I cann't remember. A lady in the States nearly died because she had been chewing lots of gum with aspante in it. It has been on radio talk back all week. It is used in things like diet coke, dielt jam or diet jelly most diet drinks. I haven't looked it up on the internet yet as I have been hearing about it all week.
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Post by felixwillford on Aug 4, 2007 4:09:32 GMT -5
Janedough,
Please know that I care deeply for your situation and you are in my thoughts. I wish I could help a wave a magic wand to erase this pain a suffering you and your family are going thru.
Sincerely, Kmarie
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Post by liz on Aug 4, 2007 5:00:59 GMT -5
My heart goes out to you brave Mom's.. Its hard enough watching your pets suffer but to watch your babies suffer must be the worst...When you feel like giving up ...look into those little faces and know that you can't give up...you must fight for them! .. This is beautiful anybody remember it? its for your little ones and the animals! I hope you enjoy it! www.youtube.com/watch?v=zRmrXgYpsxA
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Post by bugsy on Aug 4, 2007 7:37:46 GMT -5
I concur janedough....IT REALLY SUCKS. Seems all I do is hound my kid to take more herbal supplements and strip her bed all the time.... I wanna be that mom who was fun at least SOME of the time.....this takes away sooo much. And the school year...omg don't get me started. I don't look forward to the cold weather.... I used to love the Fall....school clothes shopping....apple cider...etc. Now all I see is MORE LAUNDRY due to heavier clothes and blankets....and coats...OMG..hope the washing machine doesn't break again this year. lmao Our lesions are getting a much better. That Kyolic 103 immune formula that jwf posted kicks a$$ for kids. Is relatively cheap too. ha.. I don't wanna push stuff on ya right now cause I don't think yer in the mood. Mommy's ready to snap...I wish you lived near me jane....we are both in similiar boat...and could both use the support.. I am hanging onto the fact that the CDC's less than perfect investigation over in CA will actually do some good EXPOSURE WISE for Morgellon's. Once it is a household name .. at least we can take our kids to the doc and they will KNOW wtf we are talking about and we will not have to live in fear anymore. That at the very least is what I wish!!! THIS WILL HAPPEN. Try and stay strong....those babies need ya. We are here for you Jane. xoxoxoxoo ~Bugsy
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Post by art on Aug 4, 2007 7:52:40 GMT -5
I feel so ashamed when I pity myself. My fellow sufferers have this plague much more magnified than i do. My Heart and Prayers go out to every one that has to endure this nightmare. Who ever created this and let it loose can't feel the wrath of God enough. I just hope those that perpetuate and continue to ignore everyone get their own horrific dose and suffer a long agonizing life !!!!
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Post by janedough on Aug 4, 2007 8:02:44 GMT -5
Thanks for your suggestions. I was just mourning my old life last night. Remembering when things were a little easier. I don't think I could get my kids to take kyolic. They would run, but I am glad it is working for you. I will try to get some today. Every store I think would have it did not.
RobertLouise, thank you for the helpful suggestions. I do bathe them in epsom salt. It does seem to help. I also use tea tree and peppermint shampoo in the tub for them.
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Post by toni on Aug 4, 2007 10:27:54 GMT -5
The peppermint really works great. I not only add it to body wash and shampoo, but I've taken a small empty old lotion bottle and I add any kind body lotion to it, then a few drops of the peppermint oil, and after showering I apply that all over, and in my hair too a tad. I feel like these things hate it too...and actually I don't feel any itching either when I've got it on, it's like a repellent. Plus you'll smell like a candy cane, it's actually very refreshing, and it feels and smells very cool and clean too.
Just have to be careful of how much peppermint oil you add cause one day I added too much, and it gets so cold it almost feels like it burns, like "liquid nitrogen" would feel...so a few drops in 1/16 cup of lotion works very well.
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Post by liz on Aug 4, 2007 14:59:25 GMT -5
batter to smell like a candy cane than how you smell when all that milk goes bad! even though it works great...Damn toni can I come check into your clinic..im a lot of fun and I will let you try all this stuff on me...
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Post by janedough on Aug 4, 2007 17:58:06 GMT -5
I found the Kyolic 103!!! Hooray!!! When I took the regular Kyolic, it made me get more lesions. I don't know if it was from stuff leaving or what, but I did not like it so I stopped. I hope this will have a better effect. I also started mangosteen today. Anyone try it?
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Post by bugsy on Aug 4, 2007 18:15:16 GMT -5
Yippeee....hope the immune formula works better for you. I think reg just has garlic. This stuff has two anti-parisiticals that I know of..oregano and poria...the olive leaf is anti-viral...the esther c is fabulous. Am crossing my fingers..!!!
~Bugsy
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Post by morgellonsmoe1 on Aug 4, 2007 20:52:22 GMT -5
This may ormay not help .. My son was taken by some angry grandparents and my mother has become ill not morgie hell yet but vometing . On the Morgellons sight its states that antibotics help in some cases . ( now I myself have been on an antibiotic every day for a year and acidopholous from a vit store to give my body good bactirira ) Perhaps taking a copy of that to you pediatrician ( get a hand held 30x lighted microscope so the doc can see the fibers under childrens skin .. show him the report on MRF sight and perhaps like my doc did , your doc will perscibe some antibiotics? Might work .. but if you dont try itll just stay this way ..((huggs )) and good luck
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Post by bugsy on Aug 5, 2007 8:51:16 GMT -5
Sorry to hijack your thread a bit jane but I wanted to answer morgellonsmoe's question. As a mother of a Morgellon's child I've had to become a bit clever in my approach to Physicians. I still have a great deal of respect for SOME of them...and I will not risk my childs health due to the stigma....but I will also NOT RISK HAVING MY CHILD TAKEN AWAY. A very real fear.
So my approach to the pediatrician was...go in show him her back covered with lesions...and sit back and see what he says....keep in mind I have the same lesions...so I know it's Morgs.
He read it as impetigo.....and gave some antibiotics...(yes) gave Bactrim (ended up in hives ) so he prescibed cephaflexin....she took those..face broke out in more lesions....so amoxicillin...no ill effects. Here we are three weeks later....she got a bad green phlem cough she got from some children this summer...so I brought her back to doc...and had him look at that and lesions on back..and noted (they are STILL there) so he prescribed Cipro.
The dr. did notice that before this past year my child had not needed medical treatment since 2003. Strong immune. But not anymore.
So we are trying as best we can.....to get her the help she needs. It ain't easy no matter how you slice it.
~Bugsy
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Post by bugsy on Aug 5, 2007 9:01:53 GMT -5
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Post by janedough on Aug 5, 2007 11:26:14 GMT -5
Bugsy, See I screwed it all up, though. When we were all initially itching like crazy I went in there and asked them if they thought it was scabies. Now they now I am not a hypochondriac because I have older kids who rarely got sick so that is a +. Then the summer after the scabies scare, my daughter got a bulls eye rash. I did the normal thing - take her in and show them. All the aides said "that's lyme". When the doctor came in she insisted it was not lyme and to call if it was still there in three days. She thinks I am a whacko now and she would not even write a lab request to get tested for lyme. I question her as a physician and I have since switched doctors in the group. But If I start going in and bringing up this stuff, I am like you said, terrified of losing my kids. I do not feel as though I am being negligent . I feel as though I have been abandoned by the system and I also feel threatened by the same system. SO. . . at this point I am damned if I do or don't. If things start to get worse, yes I will do what you did. My kids do not have severe lesions, They get scratches and occasional lesions. If I brought them in for that well, you know what I would get.
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Post by bugsy on Aug 5, 2007 13:35:42 GMT -5
Wow janedough. You did nothing wrong!! Now that is a different story all together. I would definitely not say the "M" word but Lyme.....hell yeah. Do you have proof and record of a bullseye on your child? Lyme IS an accepted disease to some degree...and there is some potentially effective treatment IF treated early enough. Gets harder when goes chronic. I actually DID take the Lyme approach with the kids pediatric doc...telling him I was currently being tested which I WAS...and all he asked was "DID SHE HAVE A BULLSEYE?" All I could say was "nope." All I had was antecdotal evidence.....which sucks...the bullseye blood engorged tick hanging from your flesh approach is B.S. in my opinion. But a fact of medicine as yet. Just read a couple of Lyme books about people and their children with it .... and the first thing they said to do is : Go to a doctor ASAP if you have a bullseye so at least it is on a verifiable record!!!!! Maybe people in that practice would not be receptive to Lyme either ...I know how that goes...believe me...but...If you have proof of a bullseye on at least one child you are ahead of the game... A great book about a woman who had a child to Lyme "Coping with Lyme Disease" by Denise Lang. Is free to read at any local library. Much luv. ~Bugsy
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Post by Patti on Aug 5, 2007 14:07:31 GMT -5
I'm really sorry for your predicament, Janedough. I can only assume that this doctor did not get a photo of your child's rash? Who knew that it would come to carrying a camera with you to physician's appointments, but that's exactly what I would advise anyone who finds themselves in the same situation as Jane was. Get a picture of the bulls eye rash, first close up and then if possible, one from a distance showing the child's face and the rash in one shot......plus use the date function of your camera. Doctors are slowly beginning to realize that there isn't always a rash because Lyme is acquired through other means besides tick or insect bites. But when a rash is present, that's indesputable and it should be in the child's file. I have had four bulls eye rashes that I can remember, and they have been sporadic throughout my life. Not once was I ever bitten by a tick that I'm aware of. I believe that the rash can occur at the onset of an infective outbreak which may or may not coincide with a bite of any kind. I hope things look up for you Jane, you and your children will be in our thoughts.
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