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Post by kiki on Feb 3, 2008 2:28:11 GMT -5
When Vivi asked what was in her i.v. she didnt have any thing to write with so spelling probably wrong but its certrifaxen plus orally atavacone and melofloxne. Her Dr said she had to stay in hospital at least 2 wks the she can do out patient if she didnt have any problems. You can tell shes miserable but she said no physical pain can be worse than the mental anguish of being so utterly helpless with this curse. She started having a reaction in only 15 hours. Severe vomiting, pounding migraine, and her ears itch and burn but nothing else, and the most surprising thing to her is her skin. She didnt have lesions but her skin got a yellowish crust on it the first night. The first couple days of that was hard cause she had to have eyes bandaged and saline gauze in her nose. Her Dr is a gem though and ordered pain and sleeping meds so she could pretty much sleep through the worst of it. She couldnt shower but 2x a day nurse wraps her in saline soaked gauze for about 2 hrs. She cant put lotion on but said her skin doesnt hurt or itch. Her scalp has a whitish waxy crust on it and her mom said looks like cradlecap. She was warned that shed lose her hair so had a "Billy Idol" buzz cut and said if she could do one thing over shed have done it a year ago. Shes hysterically funny cause she has no brows or llashes and said she looks like a lagoon creature but insists on pretty scarves. Dr said ok but cotton only and washed in borox then soak in saline and put on wet. She is more like herself than in 3yrs. Her mom said something was different in her face then realized it was something in her eyes. Vivi said its the look of hope. Ok now the really weird stuff. When nurse removes gauze her skin peels off with it and there are twig like things on guaze. was told it was something that rushed out of skin alive then died so it wasnt that form when it exited. I was there when she was told this but dont remember if was bacteria or what. Whatever it is they said it looked like twig because it furled up tightly when dying. She said she doesnt feel it come out and is beside herself with excitement. Her face, legs and arms now just look sunburnt. She'll have to be on this treatment for 3 months and may have to repeat every 3 months for up to 2 yrs but Dr said as quickly as shes responding probably only 1 or 2 more times. Vivi said it feels like her skin can can breath again. Other than the skin reactions, the side effects are same as chemo. Still she said shes too grateful to be bothered about the side effects. Shes very humble that she is being treated when so many have been abused by medical community. She keeps saying how did I deserve to be so lucky. Can ya believe that? She said if this gives her life back she will make it her life mission to help others get the same respect and treatment. Take my word, if she said it she will do it. She sends hope, prayers and love to her fellow victims.
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Post by felixwillford on Feb 3, 2008 11:12:11 GMT -5
I need help with an explaination.
What is happening to Vivi?
How did she end up in the hospital?
How long did she have morgellons and how on earth did she actually get a MD to treat her?
I guess I missed something.
VIVI, I am so happy to hear that "hope" was seen in your eyes. It brings hope to us all.
I wish you comfort thru this time as you heal.
Sincerely,
Kmarie
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Post by toni on Feb 3, 2008 12:58:42 GMT -5
Vivi if you're reading this, Hi and hope you're okay. I know that she's got a great doc who believes (who has some brains and compassion).
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Post by suebe on Feb 3, 2008 13:07:15 GMT -5
Kmarie Vivi was lucky that her doctor believed her from the get go.
She has been trying different treatments on Vivi for a while and has even sent her to Neuro-tox doctor.
There was mold found in her home and she tested pos. for that disease we get from bird droppings, shoot I don't remember the name but Dr. M wondered about the same disease because I use to breed birds.
I also hope Vivi's friend up-dates us as to why?, how? she ended up in the hospital.
This is so wonderful, no no shoot I didn't mean wonderful that Vivi is so sick but
WE HAVE A MORGIE IN HOSPITAL GETTING TREATMENT FOR IT.
I'm so happy that she has a doctor with balls of steel. To step forward and put her in the hospital for treatment is just amazing to me.
I'm wondering what test were done prior to this to prompt a hospital stay and it sure sounds like they are doing some very aggressive treatments.
I hope Vivi knows how many prayers are going her way and the hopes we have for her.
Please Vivi's friend keep us up dated.
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Post by kiki on Feb 3, 2008 20:02:24 GMT -5
Vivis Dr sent her to a neuro who sent her to a nerotox and all 3 are sharing her files. Her Dr says co-patienting is very beneficial since each one will have different observations and that male and female Drs tend to focus on different things so it gives a better perspective when put together. Vivi thinks her Dr is so openminded because she has horses and its common for them to get parasites and worms so its just a matter of fact thing for her and she said its pathetic that the good ole USA pharms readily dole out meds to other countries but are very arrogant to think we're above such diseases. Said she has no idea how some Drs got med license if they dont even understand how easily things are transmitted. Now I sound like Vivi on her soapbox! Her Dr only let her do this if she went to the hospital. I think because of how much weight shes lost plus she has some drug allergies. Most people dread chemo and similar treatment but to hear Vivi youd think she hit the jackpot. Makes me want to cry but when she told me about trying this I started to console her and she got snippy and said Im very excited and blessed for the chance to try this and if I didnt understand that I obviously havent been paying attention! I do understand and she knows it but said this is one of those life altering things and its impossibe to truly grasp it unless you have it. She said she doesnt even have words that will describe some of the symptoms. Shes become very defensive since she got this even though we always believed her. Its like she has to prove it. For a long time she quit life and retreated to her own little bubble. We were insane with worry. Her husband finally sat her down and said he knew she was trying to protect us but it was punishing her nearest loved ones by cutting us out of her life and that she needed to keep in mind that she could have had this for years with no symptoms. Hes about the only person that has a chance to sway her when her mind is made up. We've been friends since 3rd grade when she came up to me at recess and said my shoes would look better with her dress so we should trade. I didnt even know her name but I was smitten. We both got in trouble when we got home. Her for being maniipulating and my dad was disgusted that I was dumb enough to cram my feet in shoes so tight my feet were covered with bloody blisters. She continues to amaze me. Shes more distraught about how this affects us than she is about herself. I dont know what reason Dr gave for this treatment but recall Vivi saying her Dr didnt want to put morgellons for anything because she fears ins cos will treat it like lyme and limit treatments. She said her Dr has gone out on a limb for her so often every time she gets new prescription she expects limb to break and have ins reject it. From what she told us about how some people with this are treated I guess she did hit the Dr jackpot. She would never admit this but last Easter she wrote down the names of all the members on this board and somehow talked her mom into reciting every last name for prayer request. Toward the middle her mom broke down and was crying too hard to talk and a man sitting near her went to her and took the list and read the next name then passed it to the person next to him who did the same and that paper was passed from person to person till every single name was spoken aloud. On the funny side, some people couldnt help but chuckle at some of the names but it didnt lessen their sincerity.
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Post by sammy on Feb 3, 2008 20:57:16 GMT -5
BRAVO for vivi! What an inspiring story. Am so glad she is getting treatment & her doctors sound fantastic! Thank you so much for such a very wonderful post. She is being so a brave trooper. Send her all our best. I hope she heals very well with such good caring doctors. God speed her to full health again for going through this. Keep us posted & thanks for sharing with us.
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