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Dear ,

Since you are new to the group and mentioned having 'Harringtons " , it might

be worthwhile for you to explore the subject of flatback syndrome connected

with Harringtons. It may not be your case but you should know about it. The

readings should help you identify if you have the symptoms. It would be dxd

by a scoliosis specialist not a general orthopedic surgeon.

The muscle tightness might be helped by muscle relaxers. There are many

kinds. Of course they might put you to sleep so nighttime might be the best

time to use. Also a good body therapist can help with tight muscles.

Myofascial release and strain/counterstrain techniques have helped me

tremendously.

As always it depends on the talent of the practioner. I would ask around for

recommendations and interview the therapist prior to any touching.

Acupuncture has helped some scoliotics, too.

Good luck. Jolene

**************The year's hottest artists on the red carpet at the Grammy

Awards. Go to AOL Music.

(http://music.aol.com/grammys?NCID=aolcmp00300000002565)

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,

We have the same area of coverage T3-L1. My curve is

currently 52, but was 77+ prior to surgery in 1977 at

age 11. I know of the pain perspective from which you

speak & the quality of life you are experiencing..or

rather, NOT experiencing at this point. :( It can be

depressing at times. I was in a support group thru my

church just a little over a decade ago. The

corresponding workbook is called: How to Deal with The

Losses of Life. Little did I know that shortly after

that experience I would be in a car accident that

would radically alter my life from one of bad pain to

excruciating pain. While the book & counselling helped

from a mental perspective, the biggest boost was to

get in a pain clinic & get some appropriate medical

support. I have the degeneration that you list as well

as do many others on the list. You are in the company

of many supportive, informed, in pain people... ~Moonbeam

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Jolene,

Thank you for the suggestions. I do have a scoliosis specialist and he has not

indicated that I have flat back, so I don't think I do but I will look into it

anyway. I do regularly receive acupuncture and it does help, but I've not tried

the strain/counterstrain - will look into this as well. Thanks for your

support.

Buttonjo@... wrote: Dear ,

Since you are new to the group and mentioned having 'Harringtons " , it might

be worthwhile for you to explore the subject of flatback syndrome connected

with Harringtons. It may not be your case but you should know about it. The

readings should help you identify if you have the symptoms. It would be dxd

by a scoliosis specialist not a general orthopedic surgeon.

The muscle tightness might be helped by muscle relaxers. There are many

kinds. Of course they might put you to sleep so nighttime might be the best

time to use. Also a good body therapist can help with tight muscles.

Myofascial release and strain/counterstrain techniques have helped me

tremendously.

As always it depends on the talent of the practioner. I would ask around for

recommendations and interview the therapist prior to any touching.

Acupuncture has helped some scoliotics, too.

Good luck. Jolene

**************The year's hottest artists on the red carpet at the Grammy

Awards. Go to AOL Music.

(http://music.aol.com/grammys?NCID=aolcmp00300000002565)

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Dear Moonbeam,

Thank you for your reply. I don't know what my curvature was prior to surgery,

only that I was a borderline case. The surgeon ( Kostuik) told my parents

that if I was his daughter, he would want me to have the surgery - what else

would you expect a surgeon to say!?! And, I can't recall what my curve is at

present. I feel that I'm in good company with this group. Warm regards,

L Howell <moonbeamblessings@...> wrote:

,

We have the same area of coverage T3-L1. My curve is

currently 52, but was 77+ prior to surgery in 1977 at

age 11. I know of the pain perspective from which you

speak & the quality of life you are experiencing..or

rather, NOT experiencing at this point. :( It can be

depressing at times. I was in a support group thru my

church just a little over a decade ago. The

corresponding workbook is called: How to Deal with The

Losses of Life. Little did I know that shortly after

that experience I would be in a car accident that

would radically alter my life from one of bad pain to

excruciating pain. While the book & counselling helped

from a mental perspective, the biggest boost was to

get in a pain clinic & get some appropriate medical

support. I have the degeneration that you list as well

as do many others on the list. You are in the company

of many supportive, informed, in pain people... ~Moonbeam

__________________________________________________________

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Do you have the disk disease because Harrington Rods

were used or will this happen to anyone who has a

spinal fusion from T3-L1 as an adolescent when they

get older?

--- L M <mariconda_l@...> wrote:

> Hello,

>

> I'm new to this group and would really appreciate

> some advice from people who've been there before me.

>

> I had a spinal fusion at age 16 from T3-L1 -

> Harrington rods. I am now 48 and have degenerative

> disk disease at C4-5, C5-6, C6-7, L1-2, L2-3, L3-4,

> L4-5. I have excruciating muscle tightness mainly

> in my back, neck and shoulders, but also in other

> parts of my body to a lesser degree. I presently

> don't take any prescription meds but think that

> maybe I should start taking prescription muscle

> relaxants. I have tried many different forms of

> physical therapy.

>

> I am feeling very depressed. My quality of life

> seems to suck the big one!! Any suggestions would

> be greatly appreciated. Many thanks,

>

>

> (from Ontario)

>

>

> ---------------------------------

> Looking for the perfect gift? Give the gift of

> Flickr!

>

> [Non-text portions of this message have been

> removed]

>

>

________________________________________________________________________________\

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Degenerating disks can happen to anyone as they age and usually does to some

degree. But as scoliotic people with fusions at any age our discs are under

greater pressure for degeneration because above and below the fusion take

the extra brunt from the immobile fused section. Harrington rods can add extra

problems beyond degeneration including flatback because they were straight

rods ignoring the natural curves at the top and bottom of a normal spine.

And, no, not all surgeons are aware of the existence of flatback...it has been

recognized only as a condition for about 10-15 years but been around

longer...ignored before that. Even now some doctors aren't up on it (or refuse

to see

it because of ego?)

Jolene

**************The year's hottest artists on the red carpet at the Grammy

Awards. Go to AOL Music.

(http://music.aol.com/grammys?NCID=aolcmp00300000002565)

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Share on other sites

I believe it's because of the spinal fusion - I think it's just a matter of

physics, when 11 of your 24 vertebrae are immobile, the others are going to wear

out faster. The sad reality.

Gail Merri <p0etiss@...> wrote: Do you have

the disk disease because Harrington Rods

were used or will this happen to anyone who has a

spinal fusion from T3-L1 as an adolescent when they

get older?

--- L M <mariconda_l@...> wrote:

> Hello,

>

> I'm new to this group and would really appreciate

> some advice from people who've been there before me.

>

> I had a spinal fusion at age 16 from T3-L1 -

> Harrington rods. I am now 48 and have degenerative

> disk disease at C4-5, C5-6, C6-7, L1-2, L2-3, L3-4,

> L4-5. I have excruciating muscle tightness mainly

> in my back, neck and shoulders, but also in other

> parts of my body to a lesser degree. I presently

> don't take any prescription meds but think that

> maybe I should start taking prescription muscle

> relaxants. I have tried many different forms of

> physical therapy.

>

> I am feeling very depressed. My quality of life

> seems to suck the big one!! Any suggestions would

> be greatly appreciated. Many thanks,

>

>

> (from Ontario)

>

>

> ---------------------------------

> Looking for the perfect gift? Give the gift of

> Flickr!

>

> [Non-text portions of this message have been

> removed]

>

>

__________________________________________________________

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know-it-all with Mobile. Try it now.

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The disc disease is from the weight, immobility &

strain above the area in my case-leaving all the

pressure being upheld by the remaining discs. It

would've occured no matter what type of rod was used. ~Moonbeam

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Gail,

You are right to ask questions about this. From what I have read

fusions can indeed cause additional wear at others levels. I don't

think there is any dispute about that. However, uncorrected scoliosis

causes a tremendous amount of wear & tear also.

My scoliosis is congential. I have facet hypertrophy which has caused

stenosis. I have a vertabrae that has slipped sideways 1.5cm. In

addition, I have a good deal of disk degeneration on multiple levels.

It is from the uncorrected, actually uncorrectable, curve.

Whether there will be a better long term outcome with a fusion is such

a tough call, isn't it?

--- Gail Merri <p0etiss@...> wrote:

>

> Do you have the disk disease because Harrington Rods

> were used or will this happen to anyone who has a

> spinal fusion from T3-L1 as an adolescent when they

> get older?

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Yes it is a tough call. I am sorry to hear all you

are contending with. I appreciate the information and

wish you the best.

--- kudzupets <laura@...> wrote:

> Gail,

>

> You are right to ask questions about this. From what

> I have read

> fusions can indeed cause additional wear at others

> levels. I don't

> think there is any dispute about that. However,

> uncorrected scoliosis

> causes a tremendous amount of wear & tear also.

>

> My scoliosis is congential. I have facet hypertrophy

> which has caused

> stenosis. I have a vertabrae that has slipped

> sideways 1.5cm. In

> addition, I have a good deal of disk degeneration on

> multiple levels.

> It is from the uncorrected, actually uncorrectable,

> curve.

>

> Whether there will be a better long term outcome

> with a fusion is such

> a tough call, isn't it?

>

>

>

> --- Gail Merri <p0etiss@...> wrote:

> >

> > Do you have the disk disease because Harrington

> Rods

> > were used or will this happen to anyone who has a

> > spinal fusion from T3-L1 as an adolescent when

> they

> > get older?

>

>

________________________________________________________________________________\

____

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Do you think not having the fusion is worse or better?

This is really awful either way I think.

--- L M <mariconda_l@...> wrote:

> I believe it's because of the spinal fusion - I

> think it's just a matter of physics, when 11 of your

> 24 vertebrae are immobile, the others are going to

> wear out faster. The sad reality.

>

>

> Gail Merri <p0etiss@...> wrote:

> Do you have the disk disease because

> Harrington Rods

> were used or will this happen to anyone who has a

> spinal fusion from T3-L1 as an adolescent when they

> get older?

> --- L M <mariconda_l@...> wrote:

>

> > Hello,

> >

> > I'm new to this group and would really appreciate

> > some advice from people who've been there before

> me.

> >

> > I had a spinal fusion at age 16 from T3-L1 -

> > Harrington rods. I am now 48 and have

> degenerative

> > disk disease at C4-5, C5-6, C6-7, L1-2, L2-3,

> L3-4,

> > L4-5. I have excruciating muscle tightness

> mainly

> > in my back, neck and shoulders, but also in other

> > parts of my body to a lesser degree. I presently

> > don't take any prescription meds but think that

> > maybe I should start taking prescription muscle

> > relaxants. I have tried many different forms of

> > physical therapy.

> >

> > I am feeling very depressed. My quality of life

> > seems to suck the big one!! Any suggestions

> would

> > be greatly appreciated. Many thanks,

> >

> >

> > (from Ontario)

> >

> >

> > ---------------------------------

> > Looking for the perfect gift? Give the gift of

> > Flickr!

> >

> > [Non-text portions of this message have been

> > removed]

> >

> >

>

>

>

__________________________________________________________

> Be a better friend, newshound, and

> know-it-all with Mobile. Try it now.

>

http://mobile./;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ

>

>

>

>

>

>

>

> ---------------------------------

> All new -

> ---------------------------------

> Get a sneak peak at messages with a handy reading

> pane.

>

> [Non-text portions of this message have been

> removed]

>

>

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In my case, I more often think I would have been better off not having the

fusion. But, of course, I'll never know for sure. One thing that I feel quite

bitter about (and yes I do feel bitter, but am trying to get beyond this) is

that I have no information about my curvature pre-surgery -- I have no

photographs of what my back looked like, don't know what the degree of curvature

was, don't know if I grew taller -- my parents never obtained this information

-- in fact, my mom disconnected totally from the whole surgery thing -- was not

involved at all (ergo, one of the reasons why I'm bitter). By the time I clued

in and tried to get copies of my medical records, they had all been destroyed.

So, the only thing that I can remember is the surgeon saying that I was a

borderline case.

I am also a big believer in complementary medicine, energy healing in

particular. I regret that I didn't have an opportunity to use this before

bringing in the big invasive guns - surgery. As you can probably tell from the

tone of my post, I have many mixed feelings about my surgery. I am sure that

for many people who were beyond " borderline " that surgery truly was the only

option but in my case, I just don't know. I also recollect the surgeon saying

that I would lead a normal life, not informing us of potential and likely

problems down the road. Well, what I am going through and I'm sure many others

on this forum is not " normal " !

Anyway, thanks for listening to me rant. Do others have similar feelings and

misgivings?

(from Ontario)

Gail Merri <p0etiss@...> wrote: Do you think

not having the fusion is worse or better?

This is really awful either way I think.

--- L M <mariconda_l@...> wrote:

> I believe it's because of the spinal fusion - I

> think it's just a matter of physics, when 11 of your

> 24 vertebrae are immobile, the others are going to

> wear out faster. The sad reality.

>

>

> Gail Merri <p0etiss@...> wrote:

> Do you have the disk disease because

> Harrington Rods

> were used or will this happen to anyone who has a

> spinal fusion from T3-L1 as an adolescent when they

> get older?

> --- L M <mariconda_l@...> wrote:

>

> > Hello,

> >

> > I'm new to this group and would really appreciate

> > some advice from people who've been there before

> me.

> >

> > I had a spinal fusion at age 16 from T3-L1 -

> > Harrington rods. I am now 48 and have

> degenerative

> > disk disease at C4-5, C5-6, C6-7, L1-2, L2-3,

> L3-4,

> > L4-5. I have excruciating muscle tightness

> mainly

> > in my back, neck and shoulders, but also in other

> > parts of my body to a lesser degree. I presently

> > don't take any prescription meds but think that

> > maybe I should start taking prescription muscle

> > relaxants. I have tried many different forms of

> > physical therapy.

> >

> > I am feeling very depressed. My quality of life

> > seems to suck the big one!! Any suggestions

> would

> > be greatly appreciated. Many thanks,

> >

> >

> > (from Ontario)

> >

> >

> > ---------------------------------

> > Looking for the perfect gift? Give the gift of

> > Flickr!

> >

> > [Non-text portions of this message have been

> > removed]

> >

> >

>

>

>

__________________________________________________________

> Be a better friend, newshound, and

> know-it-all with Mobile. Try it now.

>

http://mobile./;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ

>

>

>

>

>

>

>

> ---------------------------------

> All new -

> ---------------------------------

> Get a sneak peak at messages with a handy reading

> pane.

>

> [Non-text portions of this message have been

> removed]

>

>

__________________________________________________________

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Fusion comes with the territory of scoliosis

correction. I'd much rather live with my degree of

correction even with the pain...than live with my

curve uncorrected & continuing its progression. ~Moonbeam

________________________________________________________________________________\

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Hi, ,

I have had what has been called a 'significant curve' and 'relatively

minor' since I was 13 or so. It's about 25 to 30 degrees and thoracic

only so not too bad, but it started to cause pain in my thirties. I

never had the surgery - in my day, it was 'watch and wait' - and

probably the curve is not bad enough. That said, I've had episodes of

back sprain and strain that were quite painful. Thirty years ago, I

was sent to a PT who got me doing exercises every morning and night,

and what a godsend it has been.

Some of the exercises were yoga and I began to take classes. I still

get side aches but stretching out the concave side in yoga is such a

relief.

I found a book and DVD - Yoga for Scoliosis - by Elise that is

great, nothing too strenuous but it really helped me.

You can modify yoga poses specifically to derotate your spine and to

lengthen your concave side....I could go on and on but what I want to

say is, give gentle yoga, especially Iyengar method, a try.

I am 61.

Best wishes,

W

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does anyone know anything about rolfing?

--- L M <mariconda_l@...> wrote:

> In my case, I more often think I would have been

> better off not having the fusion. But, of course,

> I'll never know for sure. One thing that I feel

> quite bitter about (and yes I do feel bitter, but am

> trying to get beyond this) is that I have no

> information about my curvature pre-surgery -- I have

> no photographs of what my back looked like, don't

> know what the degree of curvature was, don't know if

> I grew taller -- my parents never obtained this

> information -- in fact, my mom disconnected totally

> from the whole surgery thing -- was not involved at

> all (ergo, one of the reasons why I'm bitter). By

> the time I clued in and tried to get copies of my

> medical records, they had all been destroyed. So,

> the only thing that I can remember is the surgeon

> saying that I was a borderline case.

>

> I am also a big believer in complementary medicine,

> energy healing in particular. I regret that I

> didn't have an opportunity to use this before

> bringing in the big invasive guns - surgery. As you

> can probably tell from the tone of my post, I have

> many mixed feelings about my surgery. I am sure

> that for many people who were beyond " borderline "

> that surgery truly was the only option but in my

> case, I just don't know. I also recollect the

> surgeon saying that I would lead a normal life, not

> informing us of potential and likely problems down

> the road. Well, what I am going through and I'm

> sure many others on this forum is not " normal " !

>

> Anyway, thanks for listening to me rant. Do others

> have similar feelings and misgivings?

>

>

> (from Ontario)

>

> Gail Merri <p0etiss@...> wrote:

> Do you think not having the fusion is

> worse or better?

> This is really awful either way I think.

> --- L M <mariconda_l@...> wrote:

>

> > I believe it's because of the spinal fusion - I

> > think it's just a matter of physics, when 11 of

> your

> > 24 vertebrae are immobile, the others are going

> to

> > wear out faster. The sad reality.

> >

> >

> > Gail Merri <p0etiss@...> wrote:

>

> > Do you have the disk disease

> because

> > Harrington Rods

> > were used or will this happen to anyone who has

> a

> > spinal fusion from T3-L1 as an adolescent when

> they

> > get older?

> > --- L M <mariconda_l@...> wrote:

> >

> > > Hello,

> > >

> > > I'm new to this group and would really

> appreciate

> > > some advice from people who've been there

> before

> > me.

> > >

> > > I had a spinal fusion at age 16 from T3-L1 -

> > > Harrington rods. I am now 48 and have

> > degenerative

> > > disk disease at C4-5, C5-6, C6-7, L1-2, L2-3,

> > L3-4,

> > > L4-5. I have excruciating muscle tightness

> > mainly

> > > in my back, neck and shoulders, but also in

> other

> > > parts of my body to a lesser degree. I

> presently

> > > don't take any prescription meds but think

> that

> > > maybe I should start taking prescription

> muscle

> > > relaxants. I have tried many different forms

> of

> > > physical therapy.

> > >

> > > I am feeling very depressed. My quality of

> life

> > > seems to suck the big one!! Any suggestions

> > would

> > > be greatly appreciated. Many thanks,

> > >

> > >

> > > (from Ontario)

> > >

> > >

> > > ---------------------------------

> > > Looking for the perfect gift? Give the gift of

> > > Flickr!

> > >

> > > [Non-text portions of this message have been

> > > removed]

> > >

> > >

> >

> >

> >

>

>

__________________________________________________________

> > Be a better friend, newshound, and

> > know-it-all with Mobile. Try it now.

> >

>

>

http://mobile./;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ

> >

> >

> >

> >

> >

> >

> >

> > ---------------------------------

> > All new -

> > ---------------------------------

> > Get a sneak peak at messages with a handy reading

> > pane.

> >

> > [Non-text portions of this message have been

> > removed]

> >

> >

>

>

>

__________________________________________________________

> Looking for last minute shopping deals?

> Find them fast with Search.

>

http://tools.search./newsearch/category.php?category=shopping

>

>

>

>

>

>

> ---------------------------------

> Looking for the perfect gift? Give the gift of

> Flickr!

>

> [Non-text portions of this message have been

> removed]

>

>

________________________________________________________________________________\

____

Be a better friend, newshound, and

know-it-all with Mobile. Try it now.

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Hi W,

Thank you for your reply, I really appreciate it. I will definitely look up the

Yoga for Scoliosis book and DVD - had not heard of it before you mentioned it.

I'm glad that you are able to cope without having had surgery. I wish they had

taken a " wait and see " approach with me, but, oh well, it is what it is. Warm

regards,

(from Ontario)

<lmciulik@...> wrote: Hi, ,

I have had what has been called a 'significant curve' and 'relatively

minor' since I was 13 or so. It's about 25 to 30 degrees and thoracic

only so not too bad, but it started to cause pain in my thirties. I

never had the surgery - in my day, it was 'watch and wait' - and

probably the curve is not bad enough. That said, I've had episodes of

back sprain and strain that were quite painful. Thirty years ago, I

was sent to a PT who got me doing exercises every morning and night,

and what a godsend it has been.

Some of the exercises were yoga and I began to take classes. I still

get side aches but stretching out the concave side in yoga is such a

relief.

I found a book and DVD - Yoga for Scoliosis - by Elise that is

great, nothing too strenuous but it really helped me.

You can modify yoga poses specifically to derotate your spine and to

lengthen your concave side....I could go on and on but what I want to

say is, give gentle yoga, especially Iyengar method, a try.

I am 61.

Best wishes,

W

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>

> Degenerating disks can happen to anyone as they age and usually

does to some

> degree. But as scoliotic people with fusions at any age our discs

are under

> greater pressure for degeneration because above and below the

fusion take

> the extra brunt from the immobile fused section. Harrington rods

can add extra

> problems beyond degeneration including flatback because they were

straight

> rods ignoring the natural curves at the top and bottom of a normal

spine.

> And, no, not all surgeons are aware of the existence of

flatback...it has been

> recognized only as a condition for about 10-15 years but been

around

> longer...ignored before that. Even now some doctors aren't up on

it (or refuse to see

> it because of ego?)

> Jolene

>

>

>

> **************The year's hottest artists on the red carpet at the

Grammy

> Awards. Go to AOL Music.

> (http://music.aol.com/grammys?NCID=aolcmp00300000002565)

>

>

>

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  • 7 months later...

,

Thanks. I don't think they have had anti-fungals. But that was kind of my

thought, too. Maybe they are needed. At this point, I hesitate to suggest

anything. What this person is reminding me of, is when the doctors put my

daughter with CF/ABPA on steroids when she was about 9 years old. She turned

into a person we had never seen before or since. Quick to anger, irrational,

teary, etc.

Sharon K

In a message dated 10/5/2008 8:31:34 P.M. Pacific Daylight Time,

brianc8452@... writes:

As EE suggests, you could check with this person to see if they have tried

CSM or an antifungal. I didn't have any improvement in the cognitive problems

until I took Lamisil. Another option would be to try to reach a close

friend or relative of this person to let them know what's going on because they

would be in a better position to evaluate whether this is a serious problem or

just a temporary lapse in judgment.

----- Original Message ----

From: " snk1955@... " <snk1955@...>

Sent: Sunday, October 5, 2008 5:10:00 PM

Subject: [] Need some advice

Dear All,

For several months now, I have been trying to help a very sick mold victim

find their way. The last month or so, emails I have received from this

person

have been increasingly erratic and frequently aggitated.

As an example, this past week they told me they gave a referral " on my

behalf " of an expert witness to someone. First of all, I would never refer

the

name of just one expert. That is not something I do. And the name they

provided " on my behalf " would not be one I would most likely include among

others

(unless it was an insurance company who was asking). Now they tell me that

they never gave such a referral on my behalf. Made the whole thing up, they

say.

I am deeply concerned. This is not a stupid person who, as far as I know,

has ever acted like this in the past. I feel like I am witnessing an

increasing problem of...maybe a blood-brain barrier breach?

Any suggestions from anyone on how to deal with this? I am worried about

this person and at the same time, I am concerned about being illogically and

repeatedly attacked when I question them on what they are doing. It seems

like

paranoia is setting in or something. I am currently limiting contact. But

not sure that is the correct thing to do.

What a nasty issue this is from so many aspects. I am stumped. I have never

seen anything quite like this. Does anyone have any suggestions?

Thanks,

Sharon Noonan Kramer

Sharon Noonan Kramer

**************New MapQuest Local shows what's happening at your destination.

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Jeanine,

Took your advice. Sent them an email requesting that they show our email

correspondences of the past couple of days to someone close to them. At this

point, I think that is all I can really do. It is no wonder we have such a

difficult time being heard. This person is semi-freaking me out and I do know

a thing or two about what the might be experiencing. It is so sad. When

mold victims are at their worst and need their most help, is the same time they

have such difficulty communicating effectively.

Thanks,

Sharon K.

In a message dated 10/5/2008 8:54:25 P.M. Pacific Daylight Time,

jeaninem660@... writes:

the only thing I know to do is try to explain to them what may be

happening to them that they might not even reconize it happening, but

it can work that way. no dought worse with some than others.

maybe explain that the position you are in requires straight facts

and they should keep notes to help them remember for both your sakes.

it can be sneaky about it and if they haven't realized their

suffering these problems you might have to handle with special care.

it just depends, with my first exposure I didn't realize I was not

funtioning mentally well except for boughts of depression, but I

really wasn't putting things together, after second exposure I

thought I had lost my mind completely and though I didn't reaconize

everything weird about that I did reconize some, enough.

a few times I knew what had just came out of my mouth had nothing to

do with the question asked. it freaked me out when I reconized it

myself.

maybe start by asking them if they have noticed any problems with

their thought process,moods,their t

maybe explain that if they have become chemically reactive that they

wont get much grip on funtions until they start advoiding all these

things.

>

> Dear All,

>

> For several months now, I have been trying to help a very sick mold

victim

> find their way. The last month or so, emails I have received from

this person

> have been increasingly erratic and frequently aggitated.

>

> As an example, this past week they told me they gave a referral " on

my

> behalf " of an expert witness to someone. First of all, I would

never refer the

> name of just one expert. That is not something I do. And the name

they

> provided " on my behalf " would not be one I would most likely

include among others

> (unless it was an insurance company who was asking). Now they

tell me that

> they never gave such a referral on my behalf. Made the whole

thing up, they say.

>

> I am deeply concerned. This is not a stupid person who, as far as

I know,

> has ever acted like this in the past. I feel like I am witnessing

an

> increasing problem of...maybe a blood-brain barrier breach?

>

> Any suggestions from anyone on how to deal with this? I am

worried about

> this person and at the same time, I am concerned about being

illogically and

> repeatedly attacked when I question them on what they are doing.

It seems like

> paranoia is setting in or something. I am currently limiting

contact. But

> not sure that is the correct thing to do.

>

> What a nasty issue this is from so many aspects. I am stumped. I

have never

> seen anything quite like this. Does anyone have any suggestions?

>

> Thanks,

>

> Sharon Noonan Kramer

Sharon Noonan Kramer

**************New MapQuest Local shows what's happening at your destination.

Dining, Movies, Events, News & more. Try it out!

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Hi Sharon,

Have the people you mentioned tried anti fungals or csm yet? Not saying that is

the only treatment that would work but its in my opinion a good and smart course

of treatment. they help alot with regaining some normal cognitive health back.

E

From: snk1955@... <snk1955@...>

Subject: [] Need some advice

Date: Sunday, October 5, 2008, 5:10 PM

Dear All,

For several months now, I have been trying to help a very sick mold victim

find their way. The last month or so, emails I have received from this person

have been increasingly erratic and frequently aggitated.

As an example, this past week they told me they gave a referral " on my

behalf " of an expert witness to someone. First of all, I would never refer the

name of just one expert. That is not something I do. And the name they

provided " on my behalf " would not be one I would most likely include among

others

(unless it was an insurance company who was asking). Now they tell me that

they never gave such a referral on my behalf. Made the whole thing up, they say.

I am deeply concerned. This is not a stupid person who, as far as I know,

has ever acted like this in the past. I feel like I am witnessing an

increasing problem of...maybe a blood-brain barrier breach?

Any suggestions from anyone on how to deal with this? I am worried about

this person and at the same time, I am concerned about being illogically and

repeatedly attacked when I question them on what they are doing. It seems like

paranoia is setting in or something. I am currently limiting contact. But

not sure that is the correct thing to do.

What a nasty issue this is from so many aspects. I am stumped. I have never

seen anything quite like this. Does anyone have any suggestions?

Thanks,

Sharon Noonan Kramer

************ **New MapQuest Local shows what's happening at your destination.

Dining, Movies, Events, News & more. Try it out!

(http://local. mapquest. com/?ncid= emlcntnew0000000 1)

Link to comment
Share on other sites

the only thing I know to do is try to explain to them what may be

happening to them that they might not even reconize it happening, but

it can work that way. no dought worse with some than others.

maybe explain that the position you are in requires straight facts

and they should keep notes to help them remember for both your sakes.

it can be sneaky about it and if they haven't realized their

suffering these problems you might have to handle with special care.

it just depends, with my first exposure I didn't realize I was not

funtioning mentally well except for boughts of depression, but I

really wasn't putting things together, after second exposure I

thought I had lost my mind completely and though I didn't reaconize

everything weird about that I did reconize some, enough.

a few times I knew what had just came out of my mouth had nothing to

do with the question asked. it freaked me out when I reconized it

myself.

maybe start by asking them if they have noticed any problems with

their thought process,moods,ect. ?

maybe explain that if they have become chemically reactive that they

wont get much grip on funtions until they start advoiding all these

things.

>

> Dear All,

>

> For several months now, I have been trying to help a very sick mold

victim

> find their way. The last month or so, emails I have received from

this person

> have been increasingly erratic and frequently aggitated.

>

> As an example, this past week they told me they gave a referral " on

my

> behalf " of an expert witness to someone. First of all, I would

never refer the

> name of just one expert. That is not something I do. And the name

they

> provided " on my behalf " would not be one I would most likely

include among others

> (unless it was an insurance company who was asking). Now they

tell me that

> they never gave such a referral on my behalf. Made the whole

thing up, they say.

>

> I am deeply concerned. This is not a stupid person who, as far as

I know,

> has ever acted like this in the past. I feel like I am witnessing

an

> increasing problem of...maybe a blood-brain barrier breach?

>

> Any suggestions from anyone on how to deal with this? I am

worried about

> this person and at the same time, I am concerned about being

illogically and

> repeatedly attacked when I question them on what they are doing.

It seems like

> paranoia is setting in or something. I am currently limiting

contact. But

> not sure that is the correct thing to do.

>

> What a nasty issue this is from so many aspects. I am stumped. I

have never

> seen anything quite like this. Does anyone have any suggestions?

>

> Thanks,

>

> Sharon Noonan Kramer

>

>

>

> **************New MapQuest Local shows what's happening at your

destination.

> Dining, Movies, Events, News & more. Try it out!

> (http://local.mapquest.com/?ncid=emlcntnew00000001)

>

>

>

Link to comment
Share on other sites

As EE suggests, you could check with this person to see if they have tried CSM

or an antifungal.  I didn't have any improvement in the cognitive problems until

I took Lamisil.  Another option would be to try to reach a close friend or

relative of this person to let them know what's going on because they would be

in a better position to evaluate whether this is a serious problem or just a

temporary lapse in judgment.

[] Need some advice

Dear All,

For several months now, I have been trying to help a very sick mold victim

find their way. The last month or so, emails I have received from this person

have been increasingly erratic and frequently aggitated.

As an example, this past week they told me they gave a referral " on my

behalf " of an expert witness to someone. First of all, I would never refer the

name of just one expert. That is not something I do. And the name they

provided " on my behalf " would not be one I would most likely include among

others

(unless it was an insurance company who was asking). Now they tell me that

they never gave such a referral on my behalf. Made the whole thing up, they say.

I am deeply concerned. This is not a stupid person who, as far as I know,

has ever acted like this in the past. I feel like I am witnessing an

increasing problem of...maybe a blood-brain barrier breach?

Any suggestions from anyone on how to deal with this? I am worried about

this person and at the same time, I am concerned about being illogically and

repeatedly attacked when I question them on what they are doing. It seems like

paranoia is setting in or something. I am currently limiting contact. But

not sure that is the correct thing to do.

What a nasty issue this is from so many aspects. I am stumped. I have never

seen anything quite like this. Does anyone have any suggestions?

Thanks,

Sharon Noonan Kramer

************ **New MapQuest Local shows what's happening at your destination.

Dining, Movies, Events, News & more. Try it out!

(http://local. mapquest. com/?ncid= emlcntnew0000000 1)

Link to comment
Share on other sites

>Just speaking from personal experience, it is very possible her brain

functioning is less than perfect. She culd be getting brain fog in

massive amounts-I had it and sometimes I just sat on my bed for an

hour because to summon up the functions necessary for me to actually

do something was so far out of reach for me that I just sat. It was

horrifying when it happened-I used to be a smart person. Assume she is

impaired right now and don't get angry-it's not her fault! But she

does need more help now making decisions-it's what I lacked when it

was time for me to remediate the mold in my house. I was responsible

for the decision-making. Yeah I can hear everyone laughing! How was I

supposed to decide anything if I couldn't get off the bed!

The anger is also very very common-I'm afraid there's not much you can

do to change any of this right now-it's a matter of getting away from

the mold-then things will improve.

> Dear All,

>

> For several months now, I have been trying to help a very sick mold

victim

> find their way. The last month or so, emails I have received from

this person

> have been increasingly erratic and frequently aggitated.

>

> As an example, this past week they told me they gave a referral " on my

> behalf " of an expert witness to someone. First of all, I would

never refer the

> name of just one expert. That is not something I do. And the name

they

> provided " on my behalf " would not be one I would most likely include

among others

> (unless it was an insurance company who was asking). Now they tell

me that

> they never gave such a referral on my behalf. Made the whole thing

up, they say.

>

> I am deeply concerned. This is not a stupid person who, as far as I

know,

> has ever acted like this in the past. I feel like I am witnessing an

> increasing problem of...maybe a blood-brain barrier breach?

>

> Any suggestions from anyone on how to deal with this? I am worried

about

> this person and at the same time, I am concerned about being

illogically and

> repeatedly attacked when I question them on what they are doing. It

seems like

> paranoia is setting in or something. I am currently limiting

contact. But

> not sure that is the correct thing to do.

>

> What a nasty issue this is from so many aspects. I am stumped. I

have never

> seen anything quite like this. Does anyone have any suggestions?

>

> Thanks,

>

> Sharon Noonan Kramer

>

>

>

> **************New MapQuest Local shows what's happening at your

destination.

> Dining, Movies, Events, News & more. Try it out!

> (http://local.mapquest.com/?ncid=emlcntnew00000001)

>

>

>

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Share on other sites

Good advice, Quackadillian. I have often said that it is not the mold or

even the mold illnesses themselves that are the major problem. It is all the

tangental BS that goes along with it. Like not being believed, having to

fight for your insured and medical rights, getting 100 different expert advices

from 100 different self professed experts, not knowing and trying to figure

out who to trust or why some do what they do....and all of this while at your

sickest and many times not able to remember clearly what anyone told you. It

really can be a traumatic emotional rape on top of everything else one has to

deal with, when going thru this issue.

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Sharon,

My own experience was/is that mold exposure literally scrambles your

ability to think clearly and

that and the fatigue and pain almost everywhere in your body scares

you into indecision on everything.

It creates a tremendous fear that you are going to lose everything you

have worked your whole life for,

job, home, family (it tends to divide families down the lines of those

who have it and those who don't, usually

some do and some don't, and those who do are incapacitated, they can't

function at even a fraction of their pre-illness level.)

Its a very strong relationship that can survive that. No wonder your

friend is freaked out.

That said, whenever you are helping someone, you have to also draw a

line where you are comfortable.

For those of us who are sick, its important to get back on your own

feet first. Helping others, even fighting a legal case or fighting a

landlord, etc. are luxuries that many (most) have to weigh carefully..

Some can do it, others can barely survive themselves.

Most of us are somewhere in the middle..

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