Re: Mold hypersensitization/all illnesses caused by WDBs and Lyme Disease are separate issues! (was: Thoughts on the CDC )

[Guest guest]

-live

i am not an idiot -I have had lyme disease for 10 years and know

exactly what causes it. i also have positive elisa and igg and igm's

to prove it - i am not guessing. due to the lyme being mis-diagnosed

for so long and being told i had empty nest syndrome and all other

kinds of 40 year old divorced woman syndromes i am left with a

siezure disorder and too many other problems to bore you with here.

Now i would never suggest the lyme and mold have anything to do with

each other. in fact the members of the board suggested it to me.

due to lyme disease damaging our immune system and leaving us more

sensitive to this stuff. hey i worked 10 years in a cemical plant.

whatever! the lyme kicked the heck out of me.

and then this mold almost killed me. two other adults lived in my

apartment. heck, the landlord lived upstars and non of them got as

sick as i did. non of them came up positive in blood work for stachy

like i did.

and NO, the courts dont take lyme seriously, and they dont take mold

seriously, I know first hand. they dont have to. because the

CDC tells them they dont.

what i am trying to say is that any disease that that will cost

builders a fortune like mold poisening will take long time before its

taken seriously. look this happened in NYC. first they found mold

in an apartment building and we thought this was a breakthough.. but

do you know what it would mean to a city like NY if they addmitted

it? if they had to actually clean up buildings that house thousands

of units of poor people. never gonna happen. they passed some

legislation recently in NY for people living in units with mold who

have asthma but its not what betsy gotbaum origionaly wanted - nor

was it what it should be. and trust me it will be ignored. its not

taken seriously like the lead crisis was in the 70s. So i dont know

what to tell you.. and heaven knows how long we lived with lead

before they did anything about that. You should see how some of

these people live in these buildings. its horrible. they have no

clue its mold making them sick when they have rats running accross

their floors. Most doctors just medicate them and give them asthma

pumps send them off to do badly in school and have no idea the mold

might be the problem. It all makes me very sad. every one thinks

the poor gets a hand out. a piece of the pie. but my God if you

ever watch the news and see these apartments - i would rather live in

a box.

I was just trying to say that until the CDC says yes mold is really

bad,. yes lyme is really really bad if not taken care of early. You

have a very hard time of proving your case. regardless of what

happens to you. i never ment that you have to have lyme to have

mold.

I have been though my own hell for the past 10 years, fighting the

system while too sick to fight. fighting for sSD and help for

medication and what i had to do to get antiibiotics in my

bloodstream, you wouldnt ask why i am pissed at the CDC.. i also lost

my LTD and have to live with my adult son, i have been called a

melingerer by my LTD company, and since the introduction of medicare

D, i have to fight every month for my very expensive siezure

medication. I worked my entire adult life. but since the lyme

diagnoses i have fought the system and now with the mold poisen i

hear more doctors snicker under their breath like i am nuts.

so, look i wish you all good luck but i dont have the energy anymore.

I thought i could stick around and help some people through some hard

times like some of you have helped me.

My advice is: depending on the mold = get rid of your fibre board

stuff. any thing porous (sp) think of it as a fire. you have no

belongings. as far as clothing. if it can be washed in amonia and

hot water - good. otherwise i tossed it. i tossed all my books.

i didnt start to feel better until i stopped eating yeast and wheat.

i eat only rice flour - something like a celiacs diet but NO sugar.

(i miss cake) but i have to tell you that a weeks worth of anti

fungles worked well. in fact i now test negative for the stachy.

we are still on this diet, its only been 6 weeks. i am afraid to

stop. We are going week by week. i am mostly afraid of bread and

yeast.

my lyme doctor will not re-start antibiotics yet either. antibiotics

for neurosycological lyme produce yeast so i have to wait.

i am still very sensitive to scents, and other chemicals but i

always was, its just like i have super nose right now.

nne

[Guest guest]

Roe, I agree with all that you said. In fact, it isn't just the " poor "

in bad buildings in NY. Lots of NY buildings have mold. In fact, older

buildings have mold, period, and when I was looking at homes on the

north shore of Long Island, I concluded 90% had mold because of the

proximity to the water and the popularity of crawlspaces or partial

basements with crawlspaces or even just humid unfinished basements.

Moreover, I think there is a large overlap between lyme and mold,

which you addressed. It's not just that they are two unrecognized

underestimated epidemics. Just as doctors/patients are now realizing

that many cases of mysterious " CFS " or " FM " (chronic fatigue/fibro)

are actually lyme-induced, I think that many with chronic lyme who

can't get better are in moldy environments. Worse still is antibiotics

are hard to tolerate if you are in a moldy environment and reacting

and/or colonized with yeasts and fungi.

They are both biotoxin illnesses, and together can really be a

humdinger. Moreover they tend to afflict those who are genetically

vulnerable (I'm still suspicious of Shoemaker's " multisusceptible

type " as it's only his own conclusion as far as I can tell---) through

poor detox mechanisms, being " null " for glutathione etc on Genova test.

People who are borderline in terms of such detox might be holding lyme

in check (anybody who has lived in endemic areas, gone hiking, camping

etc, in New England, in northern California, in areas of

Wisconsin/Michigan especially could have a lyme tickbite and never

know it)...and then they get another exposure, for instance mold, and

it brings them down and then the lyme flourishes.

We don't know the overlap here but they are similar in that they are

under recognized, under estimated, under treated, and probably occur

together more often than we know.

WIth proper education so much could be avoided. I'd have avoided lyme

in the first place with a little more knowledge or at least proper

education about where ticks like to bite (back of the knee where I was

bit is common) and that if you get them off in the first 24-48 hours

your chances are less (so, do a tick check) and you can get your tick

tested or even prophlactically take antibiotics while having it

tested...)...same with mold, now I understand what the risks are in a

building and how to at least do fairly thorough exam so you aren't

moving into a moldy place....

Etc.Finally all I can say is you are lucky you can live with your son,

because if you had no son to take you in how would you survive? Some

people are entirely deserted by their families.

>

> -live

>

> i am not an idiot -I have had lyme disease for 10 years and know

> exactly what causes it. i also have positive elisa and igg and igm's

> to prove it - i am not guessing. due to the lyme being mis-diagnosed

> for so long and being told i had empty nest syndrome and all other

> kinds of 40 year old divorced woman syndromes i am left with a

> siezure disorder and too many other problems to bore you with here.

>

> Now i would never suggest the lyme and mold have anything to do with

> each other. in fact the members of the board suggested it to me.

> due to lyme disease damaging our immune system and leaving us more

> sensitive to this stuff. hey i worked 10 years in a cemical plant.

> whatever! the lyme kicked the heck out of me.

>

> and then this mold almost killed me. two other adults lived in my

> apartment. heck, the landlord lived upstars and non of them got as

> sick as i did. non of them came up positive in blood work for stachy

> like i did.

>

> and NO, the courts dont take lyme seriously, and they dont take mold

> seriously, I know first hand. they dont have to. because the

> CDC tells them they dont.

>

> what i am trying to say is that any disease that that will cost

> builders a fortune like mold poisening will take long time before its

> taken seriously. look this happened in NYC. first they found mold

> in an apartment building and we thought this was a breakthough.. but

> do you know what it would mean to a city like NY if they addmitted

> it? if they had to actually clean up buildings that house thousands

> of units of poor people. never gonna happen. they passed some

> legislation recently in NY for people living in units with mold who

> have asthma but its not what betsy gotbaum origionaly wanted - nor

> was it what it should be. and trust me it will be ignored. its not

> taken seriously like the lead crisis was in the 70s. So i dont know

> what to tell you.. and heaven knows how long we lived with lead

> before they did anything about that. You should see how some of

> these people live in these buildings. its horrible. they have no

> clue its mold making them sick when they have rats running accross

> their floors. Most doctors just medicate them and give them asthma

> pumps send them off to do badly in school and have no idea the mold

> might be the problem. It all makes me very sad. every one thinks

> the poor gets a hand out. a piece of the pie. but my God if you

> ever watch the news and see these apartments - i would rather live in

> a box.

>

> I was just trying to say that until the CDC says yes mold is really

> bad,. yes lyme is really really bad if not taken care of early. You

> have a very hard time of proving your case. regardless of what

> happens to you. i never ment that you have to have lyme to have

> mold.

>

>

> I have been though my own hell for the past 10 years, fighting the

> system while too sick to fight. fighting for sSD and help for

> medication and what i had to do to get antiibiotics in my

> bloodstream, you wouldnt ask why i am pissed at the CDC.. i also lost

> my LTD and have to live with my adult son, i have been called a

> melingerer by my LTD company, and since the introduction of medicare

> D, i have to fight every month for my very expensive siezure

> medication. I worked my entire adult life. but since the lyme

> diagnoses i have fought the system and now with the mold poisen i

> hear more doctors snicker under their breath like i am nuts.

>

> so, look i wish you all good luck but i dont have the energy anymore.

> I thought i could stick around and help some people through some hard

> times like some of you have helped me.

>

> My advice is: depending on the mold = get rid of your fibre board

> stuff. any thing porous (sp) think of it as a fire. you have no

> belongings. as far as clothing. if it can be washed in amonia and

> hot water - good. otherwise i tossed it. i tossed all my books.

>

> i didnt start to feel better until i stopped eating yeast and wheat.

> i eat only rice flour - something like a celiacs diet but NO sugar.

> (i miss cake) but i have to tell you that a weeks worth of anti

> fungles worked well. in fact i now test negative for the stachy.

>

> we are still on this diet, its only been 6 weeks. i am afraid to

> stop. We are going week by week. i am mostly afraid of bread and

> yeast.

>

> my lyme doctor will not re-start antibiotics yet either. antibiotics

> for neurosycological lyme produce yeast so i have to wait.

>

> i am still very sensitive to scents, and other chemicals but i

> always was, its just like i have super nose right now.

>

> nne

>

[Guest guest]

-Michal, should i assume you are live simply? that is who i was

responding to..

I get the digest and recieved a personal email from live so i am not

sure if you are the same person as live. yes having lyme my brain

does get confused at time so i dont want to offend you if you are not

the person i think you are. i appreciate your understanding. i just

want my life back and this mold set me back so far. i cant tell when

or if the lyme ended and the mold started. its all so frustrating.

I am feeling better but its been a hell of a year. i cant even begin

to tell you how bad. it makes my first year on IV antibiotics seam

like a piece of cake.

roe

-- In , Michal

<michalvictoria@...> wrote:

>

> roe,

>

> I'm so sorry you have gone through all this and I just want to

thank you for reaching out and giving the info you did. I also have

Lyme and mold and grew up and spent the early part of my adult life

in NYC. what you said really resonated with me.

>

> I just discovered you so I hope you don't disappear from the

group. But I can understand that too.

> Blessings, Michal

>

>

>

>

[Guest guest]

Live,Live,Live, I dont think anyone had a problem understanding what

she was saying. why do you do that? are you the board patrol? payed

to make sure all is factual and/or fell that everything said needs

your verification as to it's credence or not? if someone has a

question I'm sure they will ask. do you get that people here get

enough of that grap and they don't need more here? we all try the

best we can, this is not a profesional board it a support group.

profesionals come here to learn and help. we are sick and we have

brain injuries. that doesn't mean we are stupied or need you to come

in behind us and basicly belittle us because of our faults. I fell

for one that I am representative of our cause. if you have a problem

with imperfection your in the wrong place. doesn't that program you

sent me that is supposed to correct all my failures have any advice

for you about how not to come off so rude? sorry but damn that gets

on my nerves. give it a break!

> > -live

> >

> > i am not an idiot -I have had lyme disease for 10 years and know

> > exactly what causes it. i also have positive elisa and igg and

igm's

> > to prove it - i am not guessing. due to the lyme being mis-

diagnosed

> > for so long and being told i had empty nest syndrome and all other

> > kinds of 40 year old divorced woman syndromes i am left with a

> > siezure disorder and too many other problems to bore you with

here.

> >

> > Now i would never suggest the lyme and mold have anything to do

with

> > each other. in fact the members of the board suggested it to me.

> > due to lyme disease damaging our immune system and leaving us more

> > sensitive to this stuff. hey i worked 10 years in a cemical plant.

> > whatever! the lyme kicked the heck out of me.

> >

> > and then this mold almost killed me. two other adults lived in my

> > apartment. heck, the landlord lived upstars and non of them got as

> > sick as i did. non of them came up positive in blood work for

stachy

> > like i did.

> >

> > and NO, the courts dont take lyme seriously, and they dont take

mold

> > seriously, I know first hand. they dont have to. because the

> > CDC tells them they dont.

> >

> > what i am trying to say is that any disease that that will cost

> > builders a fortune like mold poisening will take long time before

its

> > taken seriously. look this happened in NYC. first they found mold

> > in an apartment building and we thought this was a breakthough..

but

> > do you know what it would mean to a city like NY if they addmitted

> > it? if they had to actually clean up buildings that house

thousands

> > of units of poor people. never gonna happen. they passed some

> > legislation recently in NY for people living in units with mold

who

> > have asthma but its not what betsy gotbaum origionaly wanted - nor

> > was it what it should be. and trust me it will be ignored. its not

> > taken seriously like the lead crisis was in the 70s. So i dont

know

> > what to tell you.. and heaven knows how long we lived with lead

> > before they did anything about that. You should see how some of

> > these people live in these buildings. its horrible. they have no

> > clue its mold making them sick when they have rats running accross

> > their floors. Most doctors just medicate them and give them asthma

> > pumps send them off to do badly in school and have no idea the

mold

> > might be the problem. It all makes me very sad. every one thinks

> > the poor gets a hand out. a piece of the pie. but my God if you

> > ever watch the news and see these apartments - i would rather

live in

> > a box.

> >

> > I was just trying to say that until the CDC says yes mold is

really

> > bad,. yes lyme is really really bad if not taken care of early.

You

> > have a very hard time of proving your case. regardless of what

> > happens to you. i never ment that you have to have lyme to have

> > mold.

> >

> > I have been though my own hell for the past 10 years, fighting the

> > system while too sick to fight. fighting for sSD and help for

> > medication and what i had to do to get antiibiotics in my

> > bloodstream, you wouldnt ask why i am pissed at the CDC.. i also

lost

> > my LTD and have to live with my adult son, i have been called a

> > melingerer by my LTD company, and since the introduction of

medicare

> > D, i have to fight every month for my very expensive siezure

> > medication. I worked my entire adult life. but since the lyme

> > diagnoses i have fought the system and now with the mold poisen i

> > hear more doctors snicker under their breath like i am nuts.

> >

> > so, look i wish you all good luck but i dont have the energy

anymore.

> > I thought i could stick around and help some people through some

hard

> > times like some of you have helped me.

> >

> > My advice is: depending on the mold = get rid of your fibre board

> > stuff. any thing porous (sp) think of it as a fire. you have no

> > belongings. as far as clothing. if it can be washed in amonia and

> > hot water - good. otherwise i tossed it. i tossed all my books.

> >

> > i didnt start to feel better until i stopped eating yeast and

wheat.

> > i eat only rice flour - something like a celiacs diet but NO

sugar.

> > (i miss cake) but i have to tell you that a weeks worth of anti

> > fungles worked well. in fact i now test negative for the stachy.

> >

> > we are still on this diet, its only been 6 weeks. i am afraid to

> > stop. We are going week by week. i am mostly afraid of bread and

> > yeast.

> >

> > my lyme doctor will not re-start antibiotics yet either.

antibiotics

> > for neurosycological lyme produce yeast so i have to wait.

> >

> > i am still very sensitive to scents, and other chemicals but i

> > always was, its just like i have super nose right now.

> >

> > nne

> >

> >

>