Sue- wow

[Guest guest]

how long has your sick family member been exposed to mold? do they have other

symptoms? Feel free to email me if you want to discuss this further.

Physical therapy has helped me the most, but I can only get to a certain point

it seems and cant get past the hurdle. I am better than I was two years ago at

PT when I was her worst patient...but still the PT will work on me and then

muscles dont stay relaxed.

You are the first I have ever found to link it to mold exposure.

I know that this was the last of my symptoms to occur...and happened after a

pelvice infection, but something is keeping these muscles from staying relaxed.

>

> Hi,

>

> I am really interested in your symptoms BECAUSE my sick family member

> has very tight pelvic floor muscles, pelvic pain and dysfunction. The

> cause of these problems is not well understood by conventional medicine,

> they are good at diagnosing it but then do not know the cause or how to

> fix, I suspect that it is neuromuscular misfiring brought on by mold and

> other toxicities.

>

> Sue

>

>

> >

> >here are my current symptoms..

> >

> >very tight pelvic floor muscles,

>

[Guest guest]

This is long, so most of you may want to ignore this.

>how long has your sick family member been exposed to mold?

Probably since he was in the womb, and he is now 20 yo. Old San

Francisco house, foggy moist region, old house, just about all the

houses are moldy in some way, we never noticed a major problem until

last spring in one room after the rain it got very musty and we are

still trying to figure out what to do about it, 2 of us are out of the

house, 2 still living there, and probably on their way out, waiting to

discuss with the doctors if I should bring my sick family member back to

SF, if not then we probably prepare to sell the house which means we

won't test or remediate per legal advice, better not to know more and

less to disclose, if we plan to stay in the house then we will do more

testing and remediation, never knew the mold was dangerous, and it

hasn't bothered the other 3 family members, although we all just sent in

urine samples to Realtime Lab to see if we have dangerous mycotoxin

levels, our sick family member was previously tested and he does have a

very high level of ochratoxin.

Of the long list of doctors only one suggested mold was a problem,

vincent marinkovich, now deceased, but he explained it more as an

allergy, not as a toxin, we tried his nasal spray for a few weeks, it

did not help and the doctor had him stop it, also we did allergy plates

on the house which came out clean the day we did them, a nice sunny

spring day. More recently we did an ERMI test on the house and it

tested 75th percentile so very moldy...

>do they

>have other symptoms? Feel free to email me if you want to discuss this

>further.

You asked so here goes:

I will e-mail you offline about his pelvic floor symptoms but besides

those, he had a lot of ear infections and upper respiratory infections

as a young child, was hospitalized 2X for croup, had pneumonia a couple

times, wheezing with respiratory infections, air hunger, head injury age

6 with no apparent long term effects, hepatitis A around age 9,

allergies around age 8 or 9, urinary frequency around age 9, 13 day

fever with one day break and then 2 weeks pneumonia at age 14 & lost 10

lbs, had a big growth spurt at age 12 and hasn't grown taller since

then, got sick more often than others and more severely, then at age 16

he just " fell apart " , started having pelvic pain and dysfunction that

was disabling, and got his sleep schedule turned around, had difficulty

getting up out of bed to do anything, initially he tried various

therapies and protocols that various doctors/practitioners prescribed

but as the weeks turned into months, and into years he lost all will,

motivation and energy to do anything to try and help himself, and he

also lost belief that anyone knew what was wrong or why...he tried to

stay in school but completed only 1 class his sophmore year, and that

was the end of school. After a year of constant pain, he started on

pain medication which is now another problem, but from his viewpoint it

is the only thing that has helped at all. Went out less and less, all

his friends moved forward, now he spends 24/7 in bed or on the couch

totally isolated except his family, he would like to get out and do

things but he doesn't feel well enuf to do anything most of the time. He

was also exposed to mercury in the womb, my biological dentist says a

mom detoxs 50% of her heavy metals into her first born child thru the

womb and breast feeding and I had a mouth full of amalgams then. He had

sealants put on his molars around age 8 or 9 and my husband thinks his

allergies started around that time, since then removed as the biological

dentist says they contain bisphenol A. He is in constant pain and

nothing works right in his body. He has chronic profuse rhinitis & nasal

polyps & goes thru $'s hundreds of kleenex a month, the nose/sinus

problems have no seasonality, he is in " top 10% of reactors " per the

allergist and is exquisitely allergic to molds and dust mites, also many

foods including gluten, he follows a gluten free diet. His lung

function test is normal except for the small airways at approx. 50%

which Dr. Gray says is typical of mold exposed patients. His

eosinophils are chronically elevated & Dr. Gray told us these get

recruited to fight fungus. He tested mildly positive to staph coag neg

which went away with treatment. He tested positive to bartonella, a

tick-borne illness and was treated for this but he had no symptom

improvement so this is not what was bothering him, he tested equivocal

for lyme and has not been treated for lyme, most docs said he does not

have lyme, but now we are about to run a melisa lyme test thru a german

lab which is a different way to look for lyme than the Igenex tests. He

has Shoemaker's dreaded genotype: the low MSH gene and the

multisusceptible gene. His MSH is chronically low, his C4a is high, VIP

low, Leptin is high, other Shoemaker markers are normal, Transforming

growth factor beta marker indicates immune system dysregulation &

inflammation, Realtime Labs mycotoxins urine test very high ochratoxin

levels, Dr. Gray's neurological testing he had more abnormal markers

than a normal healthy person and less than typical mold patient,

relative lymphocytosis, IGF-1 low, testosterone low, abnormal urine

porphyrins and pyrolles, elevated heavy metals, malabsorption, anxiety

and phobias, fatigue, sleep issues, weakness, possible early peripheral

neuropathy, itchy skin and scalp, diagnosed with lichen planus under

chin but might be fungal?, chemical sensitivity, fibromyalgia, Dr. Gray

says he lacks certain enzymes that enable one to detox, he does not

detox. He is not aware that either mold or chemicals bother him, I

guess some patients don't know, or they don't know until they recover

enough to then start to notice, he just feels bad all the time. Now he

is attempting to follow Dr. Gray's protocol, although it is difficult

for him to fully adhere to it because the pills make him nauseous, the

cholestyramine and other sequestering agents cause constipation, and he

takes none of this stuff on his own and he is not always awake for me to

give him all the stuff, I am getting old and tired and can't be up all

nite giving him meds...That's pretty much the gist of it, a living hell

that I would wish upon no one. If I could take his ills upon myself I

would do it in a heartbeat so that he could have a life, now he is just

existing, and I am his caretaker prisoner....you just never know what is

around the next bend though and I am hoping for a better 2010.

Sue

>Physical therapy has helped me the most, but I can only get to a certain

>point it seems and cant get past the hurdle. I am better than I was two

>years ago at PT when I was her worst patient...but still the PT will

>work on me and then muscles dont stay relaxed.

>

>You are the first I have ever found to link it to mold exposure.

We don't know for sure that it is due to mold exposure, but his mold doc

( Gray) and his general practitioner (Win Bertrand, Santa ,

CA) suspect that it is connected to mold and other toxins, no one really

knows, his pelvic floor symptoms are not typical mold exposure symptoms,

and the only way we will know is if he starts to get better in other

ways and also gets relief from his pelvic floor problems, and if he

doesn't get improvement in the pelvic area, it could still be related.

>

>I know that this was the last of my symptoms to occur...and happened

>after a pelvice infection, but something is keeping these muscles from

>staying relaxed.

Yes, and why would a 9 year old have urinary frequency, and then more

massive pelvic floor problems starting at age 16? He isn't a ballet

dancer or involved in some other activity where they teach you to

squeeze the heck out of that area, and while he was under a lot of

social and academic stress at the time these symptoms developed, he

wasn't under more stress than a lot of his peers...

[Guest guest]

Regarding figuring out what is caused by mold, lyme, other, if you are a

sick person who is not aware of what the triggers are, and when you have

symptoms that are not " classic " for mold or chemicals or lyme, then this

is very difficult. This is our case. We now believe that mold is a

problem and he has many of the classic symptoms per Dr. Gray but he does

not get headaches or brain fog or in fact worse when he enters a more

moldy environment or magically a little better when he enters a less

moldy environment; we believe heavy metals may be a problem, maybe

chemicals, maybe lyme, maybe something else, maybe he was just born with

a lousy immune system.... We keep looking for and running new tests that

may help shed light on the issue. Just want to let you know that you

are not alone in trying to peel back the layers of the onion to see what

is what. To some extent, treatment trials for the various problems may

help sort it out, but it all seems to be a long process, expensive and

tiring too! Sue

[Guest guest]

I get this too and I've never heard anyone else feel this way before. My muscles

freeze up only when I am in a car that has alot of mold-that is actually how I

know to get out of the car immediately. But the first time it happened I didn't

know what it was and I started shaking my arm and leg and trying to unfreeze

them. Now I know what it is. I always thought it was connected to my carpal

tunnel thing which sometimes acts up in the car when the seat is pushed too

close. But it's definitely mold related!

> >

> > Hi,

> >

> > I am really interested in your symptoms BECAUSE my sick family member

> > has very tight pelvic floor muscles, pelvic pain and dysfunction. The

> > cause of these problems is not well understood by conventional medicine,

> > they are good at diagnosing it but then do not know the cause or how to

> > fix, I suspect that it is neuromuscular misfiring brought on by mold and

> > other toxicities.

> >

> > Sue

> >

> >

> > >

> > >here are my current symptoms..

> > >

> > >very tight pelvic floor muscles,

> >

>

[Guest guest]

HI,

wanted to let you know that I just got off the phone with Dr.

Gray, my son's doctor.

He says that he sees lots of interstitial cystitis and pelvic pain in

his mold patients and w/o any evidence of bacterial infection, I thought

you would find this interesting.

SUe

[Guest guest]

Sorry,

was just trying to send this to Mich re: an offline conversation we had

earlier. sue

---------------- Begin Forwarded Message ----------------

Subject: Re: [] Sue- wow

Date Sent: Wednesday, January 13, 2010 12:00 PM

From: sue <svican@...>

HI,

wanted to let you know that I just got off the phone with Dr.

Gray, my son's doctor.

He says that he sees lots of interstitial cystitis and pelvic pain in

his mold patients and w/o any evidence of bacterial infection, I thought

you would find this interesting.

SUe

----------------- End Forwarded Message -----------------