Re: CBN-700 club 12-9-09 Dr Gray, Fabry family Mold story

[Guest guest]

HI Jack,

I agree with you, and if you go back to my e-mails, you will see that I

specifically said that this was for my son, and not necessarily

applicable to another patient, I am not a doctor and certainly not

trying to give anyone else medical advice, let me make that perfectly

clear. and yes, oral antifungal use depends on a patient's test results,

and even nasal or skin antifungal use depends on patient physical exam

and findings. We are in agreement.

But as a generality, I think Dr. Gray tends to use sequestering agents

including CSM (like Dr. Shoemaker) and some nutritional supplements, in

my son's case Grace Ziem modified protocol.

I am very glad that you recommend him, because that is what we are up to

our eyeballs in right now!!

Sue V.

>I just want to comment on Gray's protocol. I have worked with Dr. Gray

>since approximately 1986. I highly recommend him and have sent many

>patienes including the Fabry family to him. Dr. Gray does a complete

>diagnostic series on each and every patient. He does this only after he

>has obtained a complete health history and environmental history. Once

>his analysis is completed he then puts each patient on a treatment and

>supplement program. Therefore, to start discussing his treatment

>program and assuming that it will work for everyone else is not

>appropriate. For example, depending upon the results of the diagnostics

>he may or may not put a patient on anti-fungals.

>

[Guest guest]

, I have had trouble with CSM irritating my digestive system but started

putting it in applesauce and letting it sit a bit and then eating that. Someone

here gave me the idea. I can tolerate the CSM better that way. It kind of

keeps it from scattering around my mouth and the little fibers getting stuck in

my throat. I drink water in between spoons of the applesauce, to get in lots of

water. Spoon of applesauce, then sip of water, swish around my mouth a bit and

swallow, then another spoon of applesauce, etc.

>

> I hate to see people be totally screwed by these expenses. The Grace Ziem

therapy can be started for about $200 a month, more for the supplements, she has

it all on her web site, all you need is a GP who is willing to prescribe. The

nebulizer can be paid for by insurance, as can be the dr's appointment.

Organizing the supplements takes some work on your part, and are another once a

month money pit. The cholestrymine script can sometimes be paid for by insurance

also, I can get the generic for $10 a month, but It irritates my throat too

much. Dr Gray I am sure is a great Dr, but also very expensive

>

[Guest guest]

yes you can, same stuff you just put a drop in to the glutithione.   I also

put the glutitthione is a nasal spray, so it to goes directly to the brain. 

good stuff!!

From: Sam <yaddayadda53@...>

Subject: Re: [] CBN-700 club 12-9-09 Dr Gray, Fabry family Mold

story

Date: Thursday, December 10, 2009, 7:46 AM

Thanks, a. I didn't realize the powerful efficasy of the B-12 nasal

spray in being able to go right to the brain. But I did also talk with one

doctor who said that sometimes he adds b-12 to the mixture of glutathione for

nebulizing for some patients. I think he said it was for those who might have

had trouble doing the glutathione by itself.  I don't know if this mixture is

also a part of the Zeim/Pall protocols or just his own approach. Have you heard

of this?

Sam

[Guest guest]

Anne,

Interesting and amazing actually. What about washing clothing and

bedding? I have heard that adding ammonia (sounds like a bad idea) or

white vinegar to the wash takes care of the problem, anyone try this and

what were the results? Can anyone recommend a protocol for washing

washable items that removes the mold?

Also, for mattresses and other bedding that has been allergy encased,

does the allergy encasing keep the mold out of the mattresses? I have

some very expensive nontoxic mattresses that I'd like to hold on to if

possible, although since we are out of the house right now, there is no

emergency to decide about this now.

ALso Anne, did you have good success with Dr. Rea?

Has anyone used both Dr. Gray and Dr. Rea and did each help you in

different ways?

Thanks, Sue V.

>When I was at Rea's clinic I was told to have someone get rid of

>everything in my home (which I sold and never went back to) that

>couldn't be properly washed. All furniture, bedding, clothes,

>everything. I had both mold and chemical issues. I know a lot of

>people at the clinic who walked away from everything except glass and

>metal, with some exceptions. Often, people coming to the clinic

>aren't aware that the clothes they bring with them are contaminated

>and they have to go out and buy all new clothes and throw out

>everything they brought from home. Then, when they start detoxing,

>molds get into their new clothes and they have to periodically throw

>those things away as well. Anne

>On Dec 9, 2009, at 9:14 PM, sue wrote:

>

>> It sounded like it was an avoidance thing, which is amazing to me, why

>> can't the dogs be washed same as people.

[Guest guest]

great idea, my daughter will love it this way!

Thank you

From: barb b w <barb1283@...>

Subject: [] Re: CBN-700 club 12-9-09 Dr Gray, Fabry family Mold

story

Date: Thursday, December 10, 2009, 7:47 AM

, I have had trouble with CSM irritating my digestive system but started

putting it in applesauce and letting it sit a bit and then eating that. Someone

here gave me the idea. I can tolerate the CSM better that way. It kind of

keeps it from scattering around my mouth and the little fibers getting stuck in

my throat. I drink water in between spoons of the applesauce, to get in lots of

water. Spoon of applesauce, then sip of water, swish around my mouth a bit and

swallow, then another spoon of applesauce, etc.

[Guest guest]

thanks christina, I do feel like we are in good hands with Dr. Gray, and

now I just have to do the best I can to get all the stuff into him, it's

practically a fulltime job, the csm doesn't always make it into him 2x

per day, it's challenging battling with the different sleep schedules

and then there is the constipation caused by the csm, the opiates, and

my son's first symptom of illness-bowel motility problems......anyone

else have that problem, Dr. Gray hadn't seen it before in the same way

my son has it, but I am pretty convinced that is it all related,

neuromuscular misfiring in this region. sue

a wrote:

>Sue,

>rest a sure, your on the good stuff.  Make sure your son gets his 2 csm

>shakes a day.  really helps with inflamation

>K

[Guest guest]

I can see that, I was expososed 7+ years ago, didn't get any proper medical help

back than. I've figured alot out on my own. I was and stayed sicker than a dog

until I learned and started paying close attn. to what chemicals and scents I

was breating in my space.

I don't think theres anything thats going to cure a bad case of MCS

but with advoidance and time, I can tolerate things on a good day without it

wipeing me out, unless it's really bad and I don't get away from it quickly. but

there are somethings that are worse than others.

now when I'm suffering either/or infection and

inflamation, it doesn't take much to cause the same bad effects. I guess my

tolerance level goes down at those times.

I don't really think I need antifugals at this point unless they would be used

on and off again when I fell/know I have a infection

but my reacurring infections are either from my sinuses and/or lungs,

what I can't say for shure is that at this point if they are fungal or bacterial

in nature. so I can't even say antifungals would help me at all. the only thing

is , is that I still have these so called cysts in my sinuses which very well

could be fungal in nature as I got them from my exposure. keeping my sinuses

washed has helped alot but sometimes it doesn't, but I cant say if it's whats in

the cysts or what aggervate the cysts that cause the problems. they diffenity

need drained while they are swelled or doin their thing. and I had a rather bad

one that sat on my upper jaw that killed 2 teeth by killing the nerves. the

teeth were still good. when they were pulled they had pus inside them and the

nerves were dead. what drained out of that socket for 3 days was nasty and made

me sick to my stomach but the cyst disappeared, so whatever was in it drained

out.

I know when these cysts are aggervated because they block my

breathing passages and cause pressure around my eyes and face areas.

this usually causes a lung infection too, but sometimes I get the lung infection

minus the sunis infection. point is, I don't have a constant fungal infection

going on, and I've been dealing with this long enough to know that I can get

exstreme inflammation from

other things not fungal that goes along with the MCS.

I'm not into takeing meds that I dont need.

but my sinuses and olfactory tracts are damaged pretty bad, I dont have a sence

of smell from my left side anymore, it's just like it's dead. I don't think

anything is going to cure that unless I can get a new olfactory tract for the

left side of my head. lol's, anyone want to give me one? I had alot of damage

on that side, a hunk of my frontal lobe is gone on that side. I guess I breated

more in on that side, or because I sleep on my left side everthing just drained

to that side and caused more damage. ? even my cataracts was worse on that side

progressed much faster than the right eye, and the blocked tear duct is on the

left eye two.

but anyway, once you start felling better by advoidance it's hard to force

yourself to go to a doctor that you know isn't going to understand because no.1

you are going to get very ill while setting in the waiting room, for what? so a

doctor can treat you like your nuts? no thanks. I don't even know at this point

and time if my urine would still show anything, but at this point I need some

experts

to deal with my sinuses and olfactory/brain problems cause I cant take to many

more of those brain swellings, owww.

but I'm afaid my sunis and lung problems may lead to a early death

with the help of MCS. I fell like my sinuses are ate up beyond repair,

I think they have healed by theirself as much as they are going to heal and it's

not good enough. allergic, or hypersensitivity, or just plain organ damage that

gets easily aggervated, I sometimes just want to rip my face off.

I do have times, very few , when they fell desent but much more when they are

bothering me. I am wanting to try the nasal spray because that may cut down on

my sinus and lungs bothering me so much.

and anything that helps the migraines sounds like a winner to me.

but I tried the csm and something didn't agree with me, mabye fillers, no doubt

the corn aditives in both the sorbital and csm didn't work but it may have been

more than that, my stomach and bowels have been through hell. my bowels can get

inflammed to the point that my butt has a fever,lol's not funny , very painful.

I am finally getting to where I can eat some junk foods, pizza, without paying a

hudge price for it, but I'm still very careful about makeing sure things are

fresh. and still no corn.I'm sure I still get little unknown amounts and I still

get run to the bathroom sometimes,

and everything can be better or worse depending on how I fell in the first

place, so there ya have it.

I don't know if Dr. Gray has seen many late comers but I'm trying to get there.

I'd also like to see that Dr. in tx. that seems to have a good understanding of

the sinus/olfactory/brain damage.

--- In , " Jack Thrasher, Ph.D. " <toxicologist1@...>

wrote:

>

> I just want to comment on Gray's protocol. I have worked with Dr. Gray since

approximately 1986. I highly recommend him and have sent many patienes

including the Fabry family to him. Dr. Gray does a complete diagnostic series

on each and every patient. He does this only after he has obtained a complete

health history and environmental history. Once his analysis is completed he

then puts each patient on a treatment and supplement program. Therefore, to

start discussing his treatment program and assuming that it will work for

everyone else is not appropriate. For example, depending upon the results of

the diagnostics he may or may not put a patient on anti-fungals.

[Guest guest]

for a long time I had some very strange reactions to several drugs and to

antibiotics. lately I took a few antibiotics and didn't have a bad reaction to

them. I wonder if this means something as far as the levels of molds or

mycotoxins in my system. I haven't got up the nerve to tried the steriod nasal

spray again, but because that affected my nerves so bad, I felt that had more to

do with my nerve damage and MCS than with the mold/myco in my system.

--- In , " Jack Thrasher, Ph.D. " <toxicologist1@...>

wrote:

>

> I just want to comment on Gray's protocol. I have worked with Dr. Gray since

approximately 1986. I highly recommend him and have sent many patienes

including the Fabry family to him. Dr. Gray does a complete diagnostic series

on each and every patient. He does this only after he has obtained a complete

health history and environmental history.

[Guest guest]

Sue,

I don't know how sick you are so please take everything I say with a

grain of salt. My situation is a mix of chemicals and molds. I also

had a good organic mattress that I had to give away. The thing is I

lived one mile from ground zero and all the fumes and dust came into

my ground floor apartment. That is how I got so sick. I'd had mold

problems already and we were renovating , including taking out an

obviously moldy kitchen, and bathroom etc. (and fighting the coop

board who wouldn't allow me to renovate fast enough) so I had to move

in prematurely and got exposed to more mold. So I really didn't dare

take anything out of that apartment.

I have used ammonia on new clothes and bedding (not from the old

apartment) since I worried about outgassing molds and toxins into my

clothes and bedding. This was a recommendation by Dr. Croft to a

friend of mine. I can't say that I noticed a difference, but I

notice chemicals much more than I notice mold. I just did it as a

preventative. Vodka is also good. But I'm sorry to say that I

wouldn't think that cotton casings on mattresses would deter molds.

Cotton is permeable. But don't take my word for it. Maybe others

have different experiences. One way to see if you can tolerate your

mattress is to have someone put it outside for you. Maybe if you can

get near it or lie on it (when you are well enough to attempt such

things, you'll have your answer. I understand what it's like to

throw away a lifetime's worth of belongings and I've talked with many

people who have had to do the same. It's very painful, not to

mention expensive. But the people who are the sickest and have gone

through hell to try to get their health back just do it because they

know how sick they get when exposed to mold.

As for Dr. Rea, I began to get well there, especially doing oxygen

therapy while exercising and then doing sauna therapy. I also

responded well to IV therapy. But then I went downhill. But that

had nothing to do with Dr. Rea or his clinic. After I was exposed to

all the toxins in the air in lower Manhattan my doctor decided that

the only thing to do was to take out my thyroid. To make a long

story short, this turned out very badly and I was unable to maintain

normal thyroid levels. When my thyroid levels were off I was

prevented from continuing sauna therapy because I lost the ability

to sweat. It also prevented me from testing antigens or benefitting

maximally from the antigens I had tested because when my thyroid

levels moved my antigen levels moved or were unstable. Hope this

helps. Anne

On Dec 10, 2009, at 11:56 AM, sue wrote:

> Anne,

>

> Interesting and amazing actually. What about washing clothing and

> bedding? I have heard that adding ammonia (sounds like a bad idea) or

> white vinegar to the wash takes care of the problem, anyone try

> this and

> what were the results? Can anyone recommend a protocol for washing

> washable items that removes the mold?

>

> Also, for mattresses and other bedding that has been allergy encased,

> does the allergy encasing keep the mold out of the mattresses? I have

> some very expensive nontoxic mattresses that I'd like to hold on to if

> possible, although since we are out of the house right now, there

> is no

> emergency to decide about this now.

>

> ALso Anne, did you have good success with Dr. Rea?

>

> Has anyone used both Dr. Gray and Dr. Rea and did each help you in

> different ways?

>

> Thanks, Sue V.

[Guest guest]

Hi,

I get very itchy from mold so this is what I do.  I use Borax 20 mule team 1

cup to a reg load with baking soda and washing soda. 

I rinse with vinager diluted in water before I add it.  1 cup and then I add 15

drops of GSE to it, let it sit for a minimun of 15 minutes then let rinse cycle

finish. 

I always wash like this.  My clothes are stored out of the air where they

cannot pick up particles, dust, or anything.  So far this has worked for me. 

If the clothes sit out which has happened a couple of times on one or 2 items I

cannot use them. 

Wash:  1 cup each B, BS, WS  I do add a little Ecover dish soap.

Rinse : 1 cup vinager diluted (if you add straight it may change clothes color)

            15 drops of GSE

             soak at least 15 minutes

God Bless !!

dragonflymcs

Mayleen

________________________________

From: sue <svican@...>

Sent: Thu, December 10, 2009 11:56:02 AM

Subject: Re: [] Re: CBN-700 club 12-9-09 Dr Gray, Fabry family Mold

story

 

Anne,

Interesting and amazing actually. What about washing clothing and

bedding? I have heard that adding ammonia (sounds like a bad idea) or

white vinegar to the wash takes care of the problem, anyone try this and

what were the results? Can anyone recommend a protocol for washing

washable items that removes the mold?

[Guest guest]

I use a cup of baking soda and a small amt of detergent for allergy suffers, and

in the bleach cup I put ammonia. Everything comes out very fresh.

>

> Anne,

>

> Interesting and amazing actually. What about washing clothing and

> bedding? I have heard that adding ammonia (sounds like a bad idea) or

> white vinegar

[Guest guest]

Sue,

sorry to hear you were in the ER today. Hope to hear from you when

you feel up to it. Anne

On Dec 10, 2009, at 8:11 PM, sue wrote:

> HI Anne,

>

> Thank you for sharing your story and experiences...I hope that you are

> doing better and sorry about the thyroid fiasco, bet you wished you'd

> never had it taken out!!

>

> I will share my story at some point, but not today, it was a very

> difficult day w/trip to the ER, now I am just trying to catch up on my

> office work.

>

> Thanks, SUe V.

>

[Guest guest]

HI Anne,

Thank you for sharing your story and experiences...I hope that you are

doing better and sorry about the thyroid fiasco, bet you wished you'd

never had it taken out!!

I will share my story at some point, but not today, it was a very

difficult day w/trip to the ER, now I am just trying to catch up on my

office work.

Thanks, SUe V.

>Sue,

>I don't know how sick you are so please take everything I say with a

>grain of salt. My situation is a mix of chemicals and molds. I also

>had a good organic mattress that I had to give away.

[Guest guest]

Sue, if by allergy encasing you mean plastic and totally covers with zipper

closure, I would think mattress inside would be fine, but you'd need a new

plastic mattress enclosure. If not and you want to keep bed, I would think

getting the zippered plastic mattress encasing would be okay, depending on

condition of your mattress and how sensitive you are. People here have

recommended after zipping encasing shut, then putting tape over the zipper too.

--- In , sue <svican@...> wrote

>

> Interesting and amazing actually. What about washing clothing and

> bedding? I have heard that adding ammonia (sounds like a bad idea) or

> white vinegar to the wash takes care of the problem, anyone try this and

> what were the results? Can anyone recommend a protocol for washing

> washable items that removes the mold?

>

> Also, for mattresses and other bedding that has been allergy encased,

> does the allergy encasing keep the mold out of the mattresses?

[Guest guest]

hi Mayleen,

What is washing soda, never heard of it? and how much do you dilute the

vinegar? thanks, sue

>Hi,

>

>I get very itchy from mold so this is what I do.  I use Borax 20 mule

>team 1 cup to a reg load with baking soda and washing soda. 

>

>I rinse with vinager diluted in water before I add it.  1 cup and then I

>add 15 drops of GSE to it, let it sit for a minimun of 15 minutes then

>let rinse cycle finish. 

>

>I always wash like this.  My clothes are stored out of the air where

>they cannot pick up particles, dust, or anything.  So far this has

>worked for me.  If the clothes sit out which has happened a couple of

>times on one or 2 items I cannot use them. 

>

>Wash:  1 cup each B, BS, WS  I do add a little Ecover dish soap.

>

>Rinse : 1 cup vinager diluted (if you add straight it may change clothes

>color)

>

>            15 drops of GSE

>             soak at least 15 minutes

>

>God Bless !!

>dragonflymcs

>Mayleen

[Guest guest]

The mold toxin I have found goes right through any type of plastic cover.

Chemicals leach into plastic , even plastic bags,air will go through

eventually. This is why people who feel the burn from mold get rid of

everything, because they can still feel it, and get sick from it, even if it has

conventional washing.

>

> Sue, if by allergy encasing you mean plastic and totally covers with zipper

closure, I would think mattress inside would be fine, but you'd need a new

plastic mattress enclosure. If not and you want to keep bed, I would think

getting the zippered plastic mattress encasing would be okay, depending on

condition of your mattress and how sensitive you are. People here have

recommended after zipping encasing shut, then putting tape over the zipper too.

>

> --- In , sue <svican@> wrote

> >

> > Interesting and amazing actually. What about washing clothing and

> > bedding? I have heard that adding ammonia (sounds like a bad idea) or

> > white vinegar to the wash takes care of the problem, anyone try this and

> > what were the results? Can anyone recommend a protocol for washing

> > washable items that removes the mold?

> >

> > Also, for mattresses and other bedding that has been allergy encased,

> > does the allergy encasing keep the mold out of the mattresses?

>