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let me tell you a story:)

Messages
4
let me tell you a story

I am originally from Yorkshire in England and have always had a rather adventurous nature I suppose, either through travel or reading or imagination:) I left England in 1984
and went to work on cruise ships travelling all over the world, I met a beautiful American woman and eventually married. In September of 1986 we moved to Incline village in Lake Tahoe. My profession being Casino slot machines this was our preferred place to live rather than Reno or Las Vegas. We had 2 children and I moved up the job ladder
and pretty much fell into the trap of the typical American dream nonsense ...I became more and more stressed, my way of dealing with stress had always been to drink and this I did more and more. I developed panic disorder and was a complete mess when we decided to buy a house in the fall of 1994.We moved into the house in September and by the following April I had lost 40lbs from a 185lbs and had developed different intolerances to foods mainly wheat at that time.... I started seeing different doctors non of whom had a clue what was wrong with me. I went from doctor to doctor eventually seeing an alternative MD who amazingly I have stayed with on and off for the last 15 years ...he has never been of benefit at all:) I visited psychics, psychologists and everyone in between. I even spent a small fortune at the Century clinic in Reno which was well known for treating difficult incurable cases. I had Provocation/neutralization testing which made me so ill I couldn't return...they had written "highly allergic" in big letters across my file. In the next 7 years I became something of an expert in nutrition and alternative treatments somehow managing to study and hold a full time job despite being desperately ill. I actually became a food puritan from around 1996 until 2001 in that time I didn't eat any sugar or non organic food and drank nothing but purified water, I was so sick I could hardly function, I had all of my amalgam fillings removed and tried every treatment I could find ALL of which made me sicker and sicker. What I didn't know was the "alternative" grains I was eating still contained gluten (spelt and kamut) no one had suggested to me that I may be intolerant to gluten. So sometime in 2001 I decided to start drinking again and at the same time stopped eating the alternative grains, well amazingly I started to feel better and gained back all of the weight that I couldn't while still eating the grains...I still believed that all of this was due to "stress" and a unhappiness from a really poor marriage. Jump forward 10 years and after a visit to a new ND.NMD in Reno who informed me based on my history that it sounded to her like I had a biotoxin illness or mold illness.....(my previous 2 doctors actually told me I may be allergic to my wife:() somehow I am still alive have 2 more children from the same marriage am now divorced ,declared bankruptcy am about to foreclose on my house ....have discovered that the house I purchased and still live in has a toxic mold problem (which I first discovered in the bathroom wall when we first moved in, which I removed without mask gloves nothing...who knew?) I also discovered that I have the rare 0401-03-53 genotype for mold toxicity oh did I mention I have the heterozygous version yup a double whammy:). My current health state is that I am intolerant to pretty much all food and perfume, chemicals etc but amazingly still work in a management position have a small business in which I create motion graphics and video/photography films.....and am about to move into a different house for the first time in 17 years...I was never sick before I moved into this house ...so maybe I will see some improvement when I move out ...with as few possessions as possible.....wish me luck ....I need a bit:)....this story leaves out SO much but gives a general overview of amazingly catastrophic times.
 

ukxmrv

Senior Member
Messages
4,413
Location
London
Did you not see any of the stories about Lake Tahoe on the internet or read anything about the CFS outbreak there ot read any of the mould stories? It sounds as if the lessons doctors in Tahoe should have learned have been lost?

Sounds like you had a lot of problems before you moved into that house (panic disorder etc) though so may be other solutions needed.

If you know about mould toxicity that you will obviously be making plans not to take things with you that could bring the mould with you?

Hope that the moves goes well and it solves your problems. If not you may wish to stay on this group and see if others have ideas to try and help you.
 

slayadragon

Senior Member
Messages
1,122
Location
twitpic.com/photos/SlayaDragon
I am originally from Yorkshire in England and have always had a rather adventurous nature I suppose, either through travel or reading or imagination:) I left England in 1984
and went to work on cruise ships travelling all over the world, I met a beautiful American woman and eventually married. In September of 1986 we moved to Incline village in Lake Tahoe. My profession being Casino slot machines this was our preferred place to live rather than Reno or Las Vegas. We had 2 children and I moved up the job ladder
and pretty much fell into the trap of the typical American dream nonsense ...I became more and more stressed, my way of dealing with stress had always been to drink and this I did more and more. I developed panic disorder and was a complete mess when we decided to buy a house in the fall of 1994.We moved into the house in September and by the following April I had lost 40lbs from a 185lbs and had developed different intolerances to foods mainly wheat at that time.... I started seeing different doctors non of whom had a clue what was wrong with me. I went from doctor to doctor eventually seeing an alternative MD who amazingly I have stayed with on and off for the last 15 years ...he has never been of benefit at all:) I visited psychics, psychologists and everyone in between. I even spent a small fortune at the Century clinic in Reno which was well known for treating difficult incurable cases. I had Provocation/neutralization testing which made me so ill I couldn't return...they had written "highly allergic" in big letters across my file. In the next 7 years I became something of an expert in nutrition and alternative treatments somehow managing to study and hold a full time job despite being desperately ill. I actually became a food puritan from around 1996 until 2001 in that time I didn't eat any sugar or non organic food and drank nothing but purified water, I was so sick I could hardly function, I had all of my amalgam fillings removed and tried every treatment I could find ALL of which made me sicker and sicker. What I didn't know was the "alternative" grains I was eating still contained gluten (spelt and kamut) no one had suggested to me that I may be intolerant to gluten. So sometime in 2001 I decided to start drinking again and at the same time stopped eating the alternative grains, well amazingly I started to feel better and gained back all of the weight that I couldn't while still eating the grains...I still believed that all of this was due to "stress" and a unhappiness from a really poor marriage. Jump forward 10 years and after a visit to a new ND.NMD in Reno who informed me based on my history that it sounded to her like I had a biotoxin illness or mold illness.....(my previous 2 doctors actually told me I may be allergic to my wife:() somehow I am still alive have 2 more children from the same marriage am now divorced ,declared bankruptcy am about to foreclose on my house ....have discovered that the house I purchased and still live in has a toxic mold problem (which I first discovered in the bathroom wall when we first moved in, which I removed without mask gloves nothing...who knew?) I also discovered that I have the rare 0401-03-53 genotype for mold toxicity oh did I mention I have the heterozygous version yup a double whammy:). My current health state is that I am intolerant to pretty much all food and perfume, chemicals etc but amazingly still work in a management position have a small business in which I create motion graphics and video/photography films.....and am about to move into a different house for the first time in 17 years...I was never sick before I moved into this house ...so maybe I will see some improvement when I move out ...with as few possessions as possible.....wish me luck ....I need a bit:)....this story leaves out SO much but gives a general overview of amazingly catastrophic times.

Amazing to me that doctors are more likely to tell people that they are allergic to their spouses or themselves than that they are reacting to the toxins in their environments or in their bodies.

We really need to change the paradigm.

Are you still in the same house you moved into in 1994? Is that in Incline Village or elsewhere?

If you give me your email address, I will send you some info that might be of interest to you.

Best, Lisa
 
Messages
4
Hello ukxmrv:) I wasn't aware of the CFS outbreak in incline until many years later and no Doctor ever made any link to this in my case ...it was always "stress" even though I was allergic/sensitive to every medication and supplement prescribed to me (still am) .What I have found to be the only approach that works for me is avoidance/removal of substances not one time has any supplement been of value to me,my body reacts to every single one...including homeopathics in even the most minute doses...but I am digressing I stopped looking for answers in a pill form (or bottle:) years ago...........what I have learned is that we have to just be with how things are sometimes...you feel like hell..well thats just how it is..the question of why this happened to me has finally become a "why not?" there are a lot of people far worse off....hey food who needs it!:) this dosent mean I have given up looking for answers of course....Im here after all ...thanks for the reply
regards
Steve
 

xrayspex

Senior Member
Messages
1,111
Location
u.s.a.
hey Steve
that is an incredible story,and what bad luck moving to Incline Village. Irritating that none of the doctors mentioned the CFS outbreak of the 80s there after all that was ground zero. Did they figure out one of the main reasons was because of mold? I know Cheney got tired of "chasing bugs" but he did seem to think some sort of virus tied in and he felt he was exposed and could trace the day it him but that he didnt get CFS but thought it was responsible for heart problems many years later.

So I have a lot of food and chemical sensitivies and have started to think what you said too, that sometimes yr just dealt a bad hand and have to experience it, but I have very bad pain and headache attacks sometimes that shut down my life and I havent wanted to give up on finding some way to alleviate that, I hve a few things that help but are imperfect cus of the mcs and brain fog and other side effects.

And food is getting so frustrating, didnt used to noticeable react to so many. So what do you eat, what are safest foods for you?
 
Messages
4
Hello X-ray:) I really don't mean to imply that we shouldn't do anything when confronted with these crazy circumstances.... But for me things became so intensely crazy that I literally threw my hands to the sky and sad wtf is going on here.... That was right after finding a young boy who had hung himself on my local exercise trail whilst walking my dog last year... And that was after a string of events so insane that you really could make a movie ..... :) my food choices are turkey-beef.- lettuce- cucumber-butter -seasalt - and quite amazingly I can drink organic coffee and sugar.... Go figure:) more complex starches are very difficult for me.... I seem to get lots of strange leg tingles and sweats when I try starchy foods.... I have a bi problem with water and aquafina seems to be the only one that doesn't bother me... I'm writing this from my phone as my computer drive just crashed:/ so I will keep it brief .... Ate your sensitivities this extreme? Cheers
Steve
 

ukxmrv

Senior Member
Messages
4,413
Location
London
Steve,

What happened to you is seriously awful and to compound things you are still not well and having to deal with this yourself. Sympathise about the food options (I lived on salads and cooked meats when my digestion became so bad nothings would stay down/in). During the first 10 years the allergies were pretty bad (confirmed by blood/skin tests in a conventional hospital) but luckily for me EPD did help a great deal. It did take a long time to fully help through and my allergies (both to food and inhaled things) became better.

I get the impression that there was a huge movement to try and hush things up by the businesses in Incline Village. Discussions have been on all the CFS groups on and off over the years so we forget what is would be like for someone new to all of this.

Hope that the move to a cleaner home helps you. If not there are both patients and doctors with experience to work with now.
 

xrayspex

Senior Member
Messages
1,111
Location
u.s.a.
I have had increasing problems with food sensitivities, have had chemical ones forever, but didnt feel as restricted in food choices as lately....have had cfs/fm issues like 22 years or so and the food stuff has gotten worse in last 5. It seemed like trying LDN in 08 for 6 mos. increased food sensitivities, its like my body reacted to anything that made me feel slightly good.

but it could be worse. I can't do coffee, it hurts my gut and makes me feel nuts--altho you are making me think I might want to try it again, i loved it in the 80s til it just got too intolerable. I can eat chocolate and not seem to suffer terribly for it most of time, a little bit seems ok for me but a lot not good idea.

but lately my safest foods are rice, potatoes, squash, dark chicken, and i love yogurt and kefir but I think its a mixed thing for me, probly increases pain but I love organic kefir and seems good for my gut. I drink tea which can be good or bad depending on the day.

garlic and eggs really bother me, probably something to do with sulphur.

anyway, sort of tired and spacy right now (what a shocker eh) so will sign off, can't stay on track. am sorry for your ordeal as well, lots of good info here.
 

Dufresne

almost there...
Messages
1,039
Location
Laurentians, Quebec
Hi Alchemist,

It's interesting your wheat problems didn't start until you moved into that moldy house. Shoemaker claims that folks with a DQ of 2 won't actually develop the coeliac they're susceptible to until they're sufficiently exposed to biotoxins. I know this doesn't directly apply to you but maybe coeliac and wheat sensitivities do often follow exposures, regardless of the DQ. I'm mold susceptible, have a DQ of 2, and am very wheat-sensitive; I believe this could be how things got rolling with me so long ago.

Your history probably suggests (better than any I've come across) mold to be the ground zero for your health problems. I think you've good reason to be cautiously optimistic. Definitely study Shoemaker's work in depth if you haven't already.

I PMed you with a symptom history of my own because we've so much in common. I, too, have sensitized to all medicines, have a huge problem with foods, and need to rotate even the water I drink.

Hope to hear from you sometime.
Dufresne
 
Messages
4
Hi Dufresne sorry for not responding sooner I am moving this week and it's been a royal pain in the arse:) I am without my computer until I get cable on Saturday so i can only use my iPhone to keep connected(which isn't too bad I know:) I will respond in more detail with you in a few days ..... I'm too stressed right now.... Many thanks for taking the time to write
Kind regards
Steve