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Post by kiki on Dec 8, 2007 5:28:02 GMT -5
Hello to all from a worn out guinea pig! For the first time in 3 years I have honest to goodness hope. Im weaker than an over-done noodle but felt awful about not keeping in touch. In my last post I think I said my Dr referred me to neurologist familiar w/this and he referred me to a toxologist. Before he(toxologist) would even schedule an appt. he required all of my medical records from EVERY Dr and dentist Ive seen from no later than 10 years prior to symptoms, 4 pages of blood tests, multiple spectro-something MRIs, etc. and a questionaire so long that he now knows more about me than I do ;D and thats just the appetizer!! Seriously, if my Dr hadnt helped I dont think I could have managed it-she had 2 of her office staff work on it and it still took over a month to gather the info(releasing medical records is obviously not high priority to most Drs) Oh, also air testing of my house and surrounding area-not cheap let me tell ya,especially cause they found black mold in house-ouch-its a huge house and would probably be less to buy new house than have to just about "gut" it. But after consultations w/every mold abatement contractors in 3 counties(lots of them no better than thieves hubby hired one that hopefully is legit-they will pay for our choice of mold home inspector to test house twice yrly for 5 yrs after completed so sounds pretty reassuring. Its super depressing to have to be out of house over holidays-yes I know all things considered, its a small sacrifice but most of me is still human ;D and for years we were asked to be in the Christmas house tour and it feels like it was in another life-when my biggest concern was getting the decorations "just right"(sigh!). Oh poor poor me-Ha! Ok, enough of that-sorry for straying off subject. I have to get a lumbar puncture(joy,joy! but even though Im dreading it, will be a sport and be grateful someone is doing all they can to help us. But dang, those are some ugly looking needles they use... Theres so much stuff I left out but my mind is so scattered these days and I get distracted so easily and go off on a tangent(like this post). Now Im thinking I should just delete this and start over tomorrow but know that tomorrow I could be worse so will trust that you'll understand and dont think Im being evasive. I'll post more this wkend and will be more specific cause I think it will give real encouragement. Heres the thing though, I dont want to post some of it cause Im not at all comfortable sharing some of the info w/the world. Any suggestions how to share info w/just the trusted legitimate sufferers? My hand is cramping and my eyes are too tired to type more. Hold tight gang and dont be afraid to feel hope cause I do and this ordeal has made me very cynical. Sadly Im now "prove it".
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Post by Jill on Dec 8, 2007 6:04:32 GMT -5
Thank you for sharing, Vivi. I was wondering how you were doing.
Sorry you have to spend your holidays 'away' from home. I'm sure that the remediation project will be worth the effort (and $$) in the long run.
Thanks again,
Jill
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Post by robertalouise26 on Dec 8, 2007 6:14:31 GMT -5
Dear Vivi I am so sorry that you are having so much trouble but hope and pray that something positive will come out of your tests. If you feel uncomfortable about posting something send it to the Administration of this board tell them how you feel and ask them what they think you should do. They are a lovely caring sincere bunch of people and I would follow their advice. I know the needles look big and daunting but it is just one prick and it is over. Good luck and very very best wishes. Love Roberta.
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Post by toni on Dec 8, 2007 8:46:06 GMT -5
I was thinking about you too, and I'm glad you posted, and I'm sure glad you're docs are making efforts. I can imagine all you've been through, sounds like alot, but if it all helps you get better that's the end of the tunnel to look forwards to. And thank you for sharing.
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update-
Dec 8, 2007 14:42:25 GMT -5
Post by overandover on Dec 8, 2007 14:42:25 GMT -5
Hi Vivi, You do sound hopeful and I can't wait to hear more. Please let us know when you feel up to it. Love, Sue
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update-
Dec 8, 2007 22:43:15 GMT -5
Post by Orion*** on Dec 8, 2007 22:43:15 GMT -5
The interesting thing about this whole affair , that most seem to have missed, is the connection to black mold--- this has long laid in the back of my mind from day one... It will be of great value to learn of all the connections and facts of this case. O***
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update-
Dec 8, 2007 23:42:48 GMT -5
Post by robertalouise26 on Dec 8, 2007 23:42:48 GMT -5
Hi orion*** I too have had black mould in the back of my mind for quite a few yes. My daughter pointed it out to the landlord and he had the bathroom and cupboards repainted but it came back again in about 11 months and just seems to get worse. I don't know wether it is the mould or something that is feeding on the mould that is affecting us. best. Roberta.
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Post by mercury on Dec 9, 2007 0:25:36 GMT -5
Hi Orion, The black mold has been on my mind for years as well. We've had multiple breakout of it in several rooms during the rainy season here in northern california. I try to keep our house as dry as possible to inhibit mold. Dry conditions really help us feel better. -Merc
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Post by Sidney on Dec 9, 2007 2:02:27 GMT -5
Wonderful news, Vivi. I'm so happy for you and look forward to hearing more.
Wishing you total success and yes, the possibility of Toxic Black Mold has been cussed and discussed over the years.
I remember severl years ago at the now closed Board, a family moved into a beautiful new home they'd had built and eventually had to leave it to regain their health.
Mold has been a huge factor with several people who've posted over the years. Critter Haven for sure.
Lots of good luck!
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update-
Dec 9, 2007 11:18:13 GMT -5
Post by felixwillford on Dec 9, 2007 11:18:13 GMT -5
Thank you for the update, makes me think and remember:
When I managed apartments years ago, the apartment below me had mold and I used to have to clean it all the time with bleach (bleach is suppose to kill mold).
The apartment would remain vacant frrequently due to the fact that when rain came it always flooded. The wall were full of mold growing and I lived above it.
However; I never became ill. I quite that job in 1997.
I became ill after working in a nursing home with patients who have lesions/sores, but I didn't know what it was at the time, then when my apartment had a small flood with backed up sewage due to the Apartment Managers neglect............ I was exposed to sewage flies and........................ they just never cleaned it properly.
I left after 2 months and broke my lease. I got a leg infection right away and blame.
However; working those old apartments for 7 years while I attended nursing school and being in and out of other's apartments may have weakend my body.
Yes, I too believe MOLD could very well have something to do with our "toxin" problem.
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update-
Dec 9, 2007 11:36:47 GMT -5
Post by belikewater on Dec 9, 2007 11:36:47 GMT -5
Thank you so much for posting your information, Viv. You appear to be one of the most documented sufferers. I truly hope your information and findings can be archived somewhere you feel safe. Mold toxins and Lyme toxins appear to affect the body in similar ways. I am sure exposure to mold exacerbates the Lyme stuff. Some people have the genetics to burn up the toxins, many do not.
Please read Dr. Ritchie Shoemaker's book, "Mold Warriors" for a mre thorough discussion of some mold and Lyme links.
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update-
Dec 9, 2007 11:58:29 GMT -5
Post by felixwillford on Dec 9, 2007 11:58:29 GMT -5
Worth watchingyoutube.com/profile?user=angeloftheairIt's similar with facts of morgellons: 1. fungus/molds 2. hard to get medical care 4. CDC ignores it 5. Insurance doesn't want it acknowledged and have to pay claims Good Story Similar to morgellons
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