Re: New to the Group: Can you relate to my story?

[Guest guest]

Hi -

May of us can relate to your symptoms. First recommendation is generally to get

a copy of Dr. Shoemaker's book, Mold Warriors, at moldwarriors.com. He explains

a lot of what can happen and why some of us are affected and not others.

Now, there are several ways mold and mycotoxins can affect a person. If you

TRULY had/have a fungal infection, I think most folks (not all on this list)

would recommend you take anti-fungal medication, so I'm surprised if you were

actually 'diagnosed' with a fungal infection that meds were not prescribed.

But there are other ways that molds can bother you that are not technically

infections. I'm not a doctor and others here will correct my misstatements, but

mycotoxins produced by molds are by definition, poisons - according to Dr.

Shoe, about a quarter of us do not make the antibodies that remove biotoxins

from our systems, and we tend to have consequences from them staying in our

bodies. If you read the book, he has a protocol with a drug that helps to bind

to the toxins and get them removed from your system. There may be a doctor in

your area who follows his protocols.

It takes time and effort and courage to improve from where you've been, and

we're all doing it along side of you, so feel free to ask questions, but that's

where a great number of us get started....

~Haley

Snyder <amandajsnyder@...> wrote:

Hello All,

My name is Snyder. I am 29, a cook, dancer and

lover of singing, and meditation. I am currently

living in Sonoma County, Ca.

[Guest guest]

Hi ,

I imagine just about all of us can relate to your story. I would

recommend you read the book " Mold Warriors " and find a doctor that

will treat you based on Shoemaker's protocol. That protocol

(primarily by taking the Cholestyramine, which will bind the toxins)

has helped dramatically reduce many of my symptoms, in particular

some of the shakiness, funky muscle twitching, etc. This paper has a

good overview of Shoemaker's protocol (although it is written from

the perspective of Lyme disease, it applies to mold toxins as well):

http://www.publichealthalert.org/PHA%20JUNE%2007.pdf

(the article starts on page one and continues on 3 other pages, just

in case the link doesn't bring you to page 1).

My symptoms are not all gone, but they are dramatically reduced and

since I left my toxic house I no longer have severe post-exertional

fatigue. It needs to be understood that Shoemaker's protocol focuses

on getting rid of the toxins produced by the mold, but doesn't

actually do anything about the fungi that have opportunistically

taken over in your sinus cavity, gut, etc. nor does it address any

potential allergic reactions that one might have to fungi. Both of

which I'm still dealing with.

I too am still left with the chronic sinus issues and like you do

question if it doesn't have more to do with where I live than

anything else. I live in Texas and the DFW area is the 2nd worst in

the nation for allergies and right now after lots of rain our outdoor

fungal counts are very high.

I had some luck using Diflucan for the fungal infections - taking it

just twice weekly. Right now, the doctor is recommending Lamisil and

sinus surgery. I'm not keen on either of those options. I do get

alot of relief with nasal irrigation twice daily.

It really depends on your genotype, as well, as to how easily you

might recover were you to relocate somewhere with lower environmental

toxins, including mold. You may still not do well if you can't

eradicate fungal infections and if you don't do something to bind the

toxins, as you'll still have an ongoing supply of toxins being added

to your body on a daily basis.

Be well,

B

[Guest guest]

Has anybody had luck with different protocols for fungal infections?

> Check your Ph levels, odds are they are low. Add alkaline in your

diet and decrease acidity.

> Essential oils have been very helpful for me. I use them to clean

and don't experience the sensitivities I do with chemicals(tea tree,

peppermint, rosemary, lemon, cinnamon, & clove are a few.

> Get a Nettie Pot and use it religiously for your sinuses.

> Take,Take,Take vitamin C!

> Ionic foot detox has been very helpful as well as lymphatic massage.

I am also wondering if anybody has had any luck in

relocating.

> If you have invasive infections and the fungi are reproducing

within you then it would be helpful to move to a dry climate where

the fungi cannot live. The problem is that you have not addressed the

fungi within you. I think the best answer would be a combination of

the appropriate antifungal drug and relocation to an area where the

fungus cannot survive outside of the body.

I am curious how much the molds/pollens/chemical pollutants etc, are

aggravating my sinuses/taxing my immune system.

> Alot!

Best of Luck!

______________________________________________

>

[Guest guest]

Hello ,

Welcome to the group and so many others that have recently joined. I

apologize not being able welcome everyone directly because there

isn't enough time in a day. I want to address some of your concerns

to the best of my knowledge, expertise and firsthand experience and

also to slkycaldwell.

Many of the symptoms you mentioned are very common after an

exposure, disspite what many of the " experts " say. Your tremours

also some may refer to as seizures, spasms that you experience at

time of resting are not unusual. My wife also suffers from these and

of course along with many other symptoms.

I believe you had mentioned you have problems with your sinus's, has

anybody done a culture? Not just for bacterial, but for fungal also?

It normally takes fungal a longer period of time to culture out,

especially if it is fusarium.

Some of your questions are not that easy to answer, nothing is cut

and dry and what works for one may not work for another. As far as

protocols, there are several good ones and again, some may have

success with one and not others. Personally after this type of

exposure and I am not a doctor, only learned through experience, I

believe everyone should be put on an antifungal for a short period

of time, maybe 2-3 months in case there is any type of colonization.

And I do not mean diflucan or nystatin, one of the stronger ones,

such as sporanox and I would recommend a liquid form which may be a

little more difficult to get. Most likely it would be capsule. Like

anything else PLEASE start off slowly because of dieoff.

Then the chlorestyrmine (CSM) along with the rest of Dr.Shoemaker's

protocol or whomever treating physician you are working with. After

that in my opinion, diet, whirlpools and saunas and of course

vitamins.

Before you do any doctors protocol the environment that got you sick

you must leave.Some doctors will not treat you until you do, because

you are wasting your time, theirs and money.

There are many natural herbs, vitamins, etc., and treatments, but

just like any thing else start off slowly, one thing at a time in

case you have a reaction.

As far as relocating, that is your call. Many times it does seem to

help because you are not sensitized to some new molds or microbes

that you might be exposed to, at least not immediately. Many of us

would like to relocate, some already have with great success and

some just the opposite.

I think one thing that many of us are trying to do and there are

many different avenues and that is to detox, liver, kidneys,

digestive tract are the main areas we all need to concentrate on. If

you can get these organs healthy than what they are, hopefully the

rest will follow.

As far as the MCS, it's just as difficult. We just need to try and

reduce the sensitization or reactivity. If we can get an upper hand

on this we all have a darn good chance of doing much better than we

are today.

Hope this helps,

KC,

Owner

>

> Hello All,

>

> My name is Snyder. I am 29, a cook, dancer and

> lover of singing, and meditation. I am currently

> living in Sonoma County, Ca.

>

> As I child a had very good health and when I moved to

> Berkeley, CA in 2000 I began getting frequent

> cold-type symptoms. I lived in a room that had toxic

> mold beneath the carpet (I don't know what kind of

> mold). I was in the room for six months and I had

> frequent (daily) sinus pressure, sinus headaches,

> daily fatigue, difficulty thinking (brain fog), and

> occasionally I had heart palputations and shortness of

> breath.

>

> I moved out of the room and sought other housing, but

> found it very difficult as I developed moderate MCS

> (Multiple Chemical Sensitivities). I would get brain

> fog with automobile emissions, watery eyes with

> formaldehyde, etc.

>

> I moved to Vermont where I grew up and lived with my

> parents for 6 months where I began to improve, but I

> continued to have sinus headaches and some fatigue. I

> moved back to California and decided to relocate to

> the country (Sebastopol). I experienced better health

> than while in Berkeley, but I still had frequent sinus

> headaches, and fatigue. After a year or so I developed

> extreme anxiety, and had what I thought was

> hypoglycemia.

>

> The next year started having shaking and spasms when I

> rested. I would have jerks and spasms that would move

> my spine, mostly around the lower area of my

> head/upper neck. I aso would feel energy at the base

> of my spine that I identified as Kundalini energy that

> would travel up my spine. During this year, I had

> extreme emotional releases of intense grief, anger and

> fear.

>

> Currently, I experience mild shaking (a few minutes

> each day), I experience Sensitivites to chemicals,

> some brain fog with pollens/molds and I have chronic

> sinus congestion. I get mentally tired (brain fog)

> everyday around 2:30 p.m.-3:00 p.m and I sleep for

> anywhere from 1 hour to 3 hours. Some days I rest for

> 5-6 hours and I feel weak in my muscles. I never

> really know when I am going to get mentally tired, and

> it is very difficult to make plans/hold down a job.

>

> I also experience regular tension related pain. It is

> pyschosomatic in nature and moves. (Sometimes in my

> shoulders, sometimes in my sinuses, etc.)

>

> I was told by one doctor that I have a fungal

> infection. I changed my diet so that I now eat very

> little sugars (including fruits and carbohydrates).

> This has been very helpful for my sinus congestion.

>

> I am wondering if there is anybody out there who has

> had similar symptoms? Has anybody had luck with

> different protocols for fungal infections?

>

> I am also wondering if anybody has had any luck in

> relocating. I am curious how much the

> molds/pollens/chemical pollutants etc, are aggravating

> my sinuses/taxing my immune system. Has anybody had

> any luck in relocating? I am considering spending some

> time in the Prescott, AZ area to see if it helps. Does

> anybody have any contacts there?

>

> I would love to hear from anybody who can relate to

> this story or parts of it and who might offer some

> advice.

>

> Thanks so much!

>

> Many Blessings,

>

> .

>

>

>

> __________________________________________________

>

[Guest guest]

I did some searching a while back on these wierd jerking reactions

that happen sometimes, more noticed while resting and found it caused

by to much dopamine released by the brain, a milder form but same as

what causes jerking with parkinsons and torettes syndrome. also what

causes more complusiveness, and repeats of actions or words.

> >

> > Hello All,

> >

> > My name is Snyder. I am 29, a cook, dancer and

> > lover of singing, and meditation. I am currently

> > living in Sonoma County, Ca.

> >

> > As I child a had very good health and when I moved to

> > Berkeley, CA in 2000 I began getting frequent

> > cold-type symptoms. I lived in a room that had toxic

> > mold beneath the carpet (I don't know what kind of

> > mold). I was in the room for six months and I had

> > frequent (daily) sinus pressure, sinus headaches,

> > daily fatigue, difficulty thinking (brain fog), and

> > occasionally I had heart palputations and shortness of

> > breath.

> >

> > I moved out of the room and sought other housing, but

> > found it very difficult as I developed moderate MCS

> > (Multiple Chemical Sensitivities). I would get brain

> > fog with automobile emissions, watery eyes with

> > formaldehyde, etc.

> >

> > I moved to Vermont where I grew up and lived with my

> > parents for 6 months where I began to improve, but I

> > continued to have sinus headaches and some fatigue. I

> > moved back to California and decided to relocate to

> > the country (Sebastopol). I experienced better health

> > than while in Berkeley, but I still had frequent sinus

> > headaches, and fatigue. After a year or so I developed

> > extreme anxiety, and had what I thought was

> > hypoglycemia.

> >

> > The next year started having shaking and spasms when I

> > rested. I would have jerks and spasms that would move

> > my spine, mostly around the lower area of my

> > head/upper neck. I aso would feel energy at the base

> > of my spine that I identified as Kundalini energy that

> > would travel up my spine. During this year, I had

> > extreme emotional releases of intense grief, anger and

> > fear.

> >

> > Currently, I experience mild shaking (a few minutes

> > each day), I experience Sensitivites to chemicals,

> > some brain fog with pollens/molds and I have chronic

> > sinus congestion. I get mentally tired (brain fog)

> > everyday around 2:30 p.m.-3:00 p.m and I sleep for

> > anywhere from 1 hour to 3 hours. Some days I rest for

> > 5-6 hours and I feel weak in my muscles. I never

> > really know when I am going to get mentally tired, and

> > it is very difficult to make plans/hold down a job.

> >

> > I also experience regular tension related pain. It is

> > pyschosomatic in nature and moves. (Sometimes in my

> > shoulders, sometimes in my sinuses, etc.)

> >

> > I was told by one doctor that I have a fungal

> > infection. I changed my diet so that I now eat very

> > little sugars (including fruits and carbohydrates).

> > This has been very helpful for my sinus congestion.

> >

> > I am wondering if there is anybody out there who has

> > had similar symptoms? Has anybody had luck with

> > different protocols for fungal infections?

> >

> > I am also wondering if anybody has had any luck in

> > relocating. I am curious how much the

> > molds/pollens/chemical pollutants etc, are aggravating

> > my sinuses/taxing my immune system. Has anybody had

> > any luck in relocating? I am considering spending some

> > time in the Prescott, AZ area to see if it helps. Does

> > anybody have any contacts there?

> >

> > I would love to hear from anybody who can relate to

> > this story or parts of it and who might offer some

> > advice.

> >

> > Thanks so much!

> >

> > Many Blessings,

> >

> > .

> >

> >

> >

> > __________________________________________________

> >

[Guest guest]

-

I also experience the " tremors " in the back of the neck when lying

down (unfortunately, usually when attempting to go to sleep). This

was one of the first bizarre symptoms that I experienced back when I

was trying to figure out what was going on in my house. As many of

you have experienced, none of the doctors had a clue.

After eliminating lyme disease and carbon monoxide poisoning, I had

my house tested for mold spores. And sure enough, aspergillus and

penicillium spores were found in large quantities. Versions of both

can be tremorgenic, but they found the penicillium in large numbers

in my bedroom, so a version of it is the most likely culprit.

As most of the other posts suggest, get a copy of Mold Warriors. Dr.

Shoemaker was the first doctor who when I asked if he'd ever heard of

the tremors before, he said " Yes! " . So he knows his stuff. He also

guessed that it was Penicillium spores that were causing it, without

looking at the environmental report.

Do you also experience chills? Like always being cold? If so, it

may be that your thyroid and or adrenals are starting to wear down

from the stress of this illness. One of the books I've read on the

thyroid stated that the sternocleidomastoid muscles run down the back

of your neck and are responsible for balance in the body when your

eyes are closed, sort of a backup for the inner ear. In hypothyroid

patients, mucin develops in the muscle. This can cause

balance/vertigo issues and possibly tremors. Getting up to the

correct thyroid hormone will help reverse this. (That's another

story - one of the most misdiagnosed/treated illness by doctors and

endocrinologists is hypothyroidism)

But the bottom line is - my tremors have continued to get worse as I

experienced a reaction to mold. So my recommendation is that if

you're experiencing them, get out! And don't take any of your stuff

with you. Unfortunately, this is always the best way to give your

immune system a chance to recover.

>

> Hello All,

>

> My name is Snyder. I am 29, a cook, dancer and

> lover of singing, and meditation. I am currently

> living in Sonoma County, Ca.

>

> As I child a had very good health and when I moved to

> Berkeley, CA in 2000 I began getting frequent

> cold-type symptoms. I lived in a room that had toxic

> mold beneath the carpet (I don't know what kind of

> mold). I was in the room for six months and I had

> frequent (daily) sinus pressure, sinus headaches,

> daily fatigue, difficulty thinking (brain fog), and

> occasionally I had heart palputations and shortness of

> breath.

>

> I moved out of the room and sought other housing, but

> found it very difficult as I developed moderate MCS

> (Multiple Chemical Sensitivities). I would get brain

> fog with automobile emissions, watery eyes with

> formaldehyde, etc.

>

> I moved to Vermont where I grew up and lived with my

> parents for 6 months where I began to improve, but I

> continued to have sinus headaches and some fatigue. I

> moved back to California and decided to relocate to

> the country (Sebastopol). I experienced better health

> than while in Berkeley, but I still had frequent sinus

> headaches, and fatigue. After a year or so I developed

> extreme anxiety, and had what I thought was

> hypoglycemia.

>

> The next year started having shaking and spasms when I

> rested. I would have jerks and spasms that would move

> my spine, mostly around the lower area of my

> head/upper neck. I aso would feel energy at the base

> of my spine that I identified as Kundalini energy that

> would travel up my spine. During this year, I had

> extreme emotional releases of intense grief, anger and

> fear.

>

> Currently, I experience mild shaking (a few minutes

> each day), I experience Sensitivites to chemicals,

> some brain fog with pollens/molds and I have chronic

> sinus congestion. I get mentally tired (brain fog)

> everyday around 2:30 p.m.-3:00 p.m and I sleep for

> anywhere from 1 hour to 3 hours. Some days I rest for

> 5-6 hours and I feel weak in my muscles. I never

> really know when I am going to get mentally tired, and

> it is very difficult to make plans/hold down a job.

>

> I also experience regular tension related pain. It is

> pyschosomatic in nature and moves. (Sometimes in my

> shoulders, sometimes in my sinuses, etc.)

>

> I was told by one doctor that I have a fungal

> infection. I changed my diet so that I now eat very

> little sugars (including fruits and carbohydrates).

> This has been very helpful for my sinus congestion.

>

> I am wondering if there is anybody out there who has

> had similar symptoms? Has anybody had luck with

> different protocols for fungal infections?

>

> I am also wondering if anybody has had any luck in

> relocating. I am curious how much the

> molds/pollens/chemical pollutants etc, are aggravating

> my sinuses/taxing my immune system. Has anybody had

> any luck in relocating? I am considering spending some

> time in the Prescott, AZ area to see if it helps. Does

> anybody have any contacts there?

>

> I would love to hear from anybody who can relate to

> this story or parts of it and who might offer some

> advice.

>

> Thanks so much!

>

> Many Blessings,

>

> .

>

>

>

> __________________________________________________

>

[Guest guest]

I have the tic thing. Most people don't notice it. Mine is kind of in

my head or neck area on the left side. I have also read about the

dopamine. I went to a neurologist when I first got ill and I had MRI's.

They didn't know what it was. I also thought it was like torettes

syndrome but the doctor seemed to think if I didn't have it as a child

that it wasn't that disorder. I take ativan the generic form and

clonidine and it helps so much. I couldn't stand it without medication.

I have had it for over ten years. Welcome to our group.

[Guest guest]

do you sometimes have like a snap in your head, hard to explain but

just once in awhile it happens, sometimes strong ,sometimes weaker.

maybe a circut misfire. fells like something brittle breaking apart

nut I'm pretty sure its electrical in nature.

>

[Guest guest]

sorry, I forgot about this explanation of jerks that are tied in with

epilipsy which is more like the jerks I was tkinking about.

I probibly should have used the word tic or repetative type motions

with the lower post instead of jerking.

http://en.wikipedia.org/wiki/Myoclonus

and I think the tremmors are seperate from both of these type of

reactions just based on myself haveing them. so many weird things going

on with this illness. spasms,tremmors,jerks,tics,repetative

actions,numbness,tingleing,shakiness,weakness, ect.

hard to explain tremmors, kind of like if you were shakeing and

tingleing really fast. lol's, a horsefly on the string comes to mind if

you ever done that you can fell the vibration. hey vibrateing could be

close to describeing it.

I did some searching a while back on these wierd

(tic,repetiveness,complusiveness) reactions

> that happen sometimes, more noticed while resting and found it caused

> by to much dopamine released by the brain, a milder form but same as

> what causes reactions with parkinsons and torettes syndrome. also

what

> causes more complusiveness, and repeats of actions or words.