(unknown)

[Guest guest]

Hi ,

My " brand " of CMT is HNPP but with all of the weaknesses and deformities

associated with CMT1A. In 1967 I hurt my back and suffered maybe three or

four episodes of spasm followed by lock up and three days inbed with 1 to

three weeks of conservative recovery. My employer of 30 years was generous.

Decades later I found I had a disorder called CMT. The lower back muscles

are just weaker and need to be carefully considered in life. So far I've had

no back operations. Watch out for Vicodine - it's habit forming. I use light

pain snubers such as Ibuprofun and light Valium for spasm control untill the

muscles recoup. - Good Luck - EdM

P.S. - A small trapeze over the edge of the bed really helps getting in and

out.

-----Original Message-----

From: pkrok@... <pkrok@...>

< >

Date: Saturday, March 24, 2001 12:23 PM

Subject: [] (unknown)

>My name is and I'm 54 years old. During 1998 I

>began having severe balance problems.

>

>Incurred a bad fall etc.

>

>About two years ago my general practitioner sent me to a

>neurology professor and through emg etc determined CMT.

>

>I recently obtained new ankle / foot braces but then two

>weeks ago through my back out. The MRI etc states I have

>a degenerative disk disease.

>

>Pain is now prevelant after a 1/2 hour of sitting /

>standing.

>

>Am looking for guidance. I have been an excellent

>employee for 25 years but now am missing some time.

>

>When I take vicodine it throws my sensory system way out

>of whack.

>

>

>

[Guest guest]

Hi ,

My name is Owen and I'm 58. I also have the same problems with my back and

Vicodine. I use Ibroprofen 500 mg, Flexaril, and regular extra strength

Tylenol also flat on my back in bed for 3 days. This seems to work the best

and fastest toward getting back to normal?? I mean for CMT patient. This

does not relieve all the pain but makes the pain bearable ( 3-4 ).

When you through your back out you must rest. I know from experience.

Happy Trails

Owen

pkrok@... wrote:

> My name is and I'm 54 years old. During 1998 I

> began having severe balance problems.

>

> Incurred a bad fall etc.

>

> About two years ago my general practitioner sent me to a

> neurology professor and through emg etc determined CMT.

>

> I recently obtained new ankle / foot braces but then two

> weeks ago through my back out. The MRI etc states I have

> a degenerative disk disease.

>

> Pain is now prevelant after a 1/2 hour of sitting /

> standing.

>

> Am looking for guidance. I have been an excellent

> employee for 25 years but now am missing some time.

>

> When I take vicodine it throws my sensory system way out

> of whack.

>

>

>

[Guest guest]

Its been two weeks now and the pain continues to

radiated through my hips and upper back.

> Hi ,

>

> My name is Owen and I'm 58. I also have the same problems with my back and

> Vicodine. I use Ibroprofen 500 mg, Flexaril, and regular extra strength

> Tylenol also flat on my back in bed for 3 days. This seems to work the best

> and fastest toward getting back to normal?? I mean for CMT patient. This

> does not relieve all the pain but makes the pain bearable ( 3-4 ).

>

> When you through your back out you must rest. I know from experience.

>

> Happy Trails

>

> Owen

>

> pkrok@... wrote:

>

> > My name is and I'm 54 years old. During 1998 I

> > began having severe balance problems.

> >

> > Incurred a bad fall etc.

> >

> > About two years ago my general practitioner sent me to a

> > neurology professor and through emg etc determined CMT.

> >

> > I recently obtained new ankle / foot braces but then two

> > weeks ago through my back out. The MRI etc states I have

> > a degenerative disk disease.

> >

> > Pain is now prevelant after a 1/2 hour of sitting /

> > standing.

> >

> > Am looking for guidance. I have been an excellent

> > employee for 25 years but now am missing some time.

> >

> > When I take vicodine it throws my sensory system way out

> > of whack.

> >

> >

> >

[Guest guest]

In a message dated 4/5/01 4:02:35 PM Eastern Daylight Time, pkrok@...

writes:

<< Does CMT also impact the lower back as well

as my legs and feet >>

All the years of walking on CMT feet so to speak, have taken a

toll on my back. I have what they call spondylosis. A little bone that is

out of whack in my vertebra. I can sneeze sometime and throw it out. Some

times it takes a week to heal, sometimes it has taken nearly a month. I only

have pain when it is out of zinc.

E

[Guest guest]

Thanks Jege666. Sleepless in seattle ? No, just

Sleepless in Cherry Valley !

> In a message dated 4/5/01 4:02:35 PM Eastern Daylight Time, pkrok@...

> writes:

>

> << Does CMT also impact the lower back as well

> as my legs and feet >>

>

> All the years of walking on CMT feet so to speak, have taken a

> toll on my back. I have what they call spondylosis. A little bone that is

> out of whack in my vertebra. I can sneeze sometime and throw it out. Some

> times it takes a week to heal, sometimes it has taken nearly a month. I only

> have pain when it is out of zinc.

> E

>

>

[Guest guest]

----- Original Message -----

From: <waterboy@...>

< >

Sent: Friday, July 13, 2001 1:04 AM

Subject: [ ] (unknown)

> I was wondering how they determined the optimal calorie intake for

> the CR animals.

>

>

>

[Guest guest]

Mike, thanks for the information. The reason I was wondering is that

I have been doing CR for some time now and am down to about 1600

cal/day and am not losing any weight. I have been considering

cutting my calories even further but don't want to enter into a mode

of stravation. I am 6'1 and weigh 165 (I lift weights, eat well, and

take vitamins and minerals so this may also be why I'm not losing

anything). I still have bodyfat though andwhat I am going to do is

keep cutting my calories until I have next to no bodyfat left and

then add 100-200 calories to that number. Please let me know what

you think about that (feel free to be completely honest).

Thanks,

P.S. I was wondering why you put in that last sentence. I think we

all believe that CR is going to work for humans as well, otherwise

why are we doing it.

P.P.S. I was suprised there wasn't some magic number to multiply

one's weight by considering man ranges in size by so much.

[Guest guest]

----- Original Message -----

From: <waterboy@...>

< >

Sent: Saturday, July 14, 2001 5:54 PM

Subject: [ ] Re: (unknown)

> Mike, thanks for the information. The reason I was wondering is that

> I have been doing CR for some time now and am down to about 1600

> cal/day and am not losing any weight. I have been considering

> cutting my calories even further but don't want to enter into a mode

> of stravation. I am 6'1 and weigh 165 (I lift weights, eat well, and

> take vitamins and minerals so this may also be why I'm not losing

> anything). I still have bodyfat though andwhat I am going to do is

> keep cutting my calories until I have next to no bodyfat left and

> then add 100-200 calories to that number. Please let me know what

> you think about that (feel free to be completely honest).

> Thanks,

>

> P.S. I was wondering why you put in that last sentence. I think we

> all believe that CR is going to work for humans as well, otherwise

> why are we doing it.

> P.P.S. I was suprised there wasn't some magic number to multiply

> one's weight by considering man ranges in size by so much.

>

>

>

[Guest guest]

, there's a Jeff May in MA who wrote the book, " My House is

Killing Me " . His website address is: http://www.jmhi.com/

Barth

SBS: MY STORY: www.presenting.net/sbs/sbsstory.html

[Guest guest]

Dear Bianca

You wrote:

Whoops, the picture didn't come through. You will have to link through.

http://www.consciouschoice.com/food/ancestraldiet1403.html

If you click through to the article you will also see

the Ancestral Food Pyramid compared with the

Contemporary Food Pyramid.

That ancestral food pyramid didn't include grain at all...do you see a problem

with that?

Sincerely,

Sonja K.

[Guest guest]

I don't get any email from Gi Gi that must be a different support group. You can block a sender if you want to or ask her to stop sending them to you.

Let me know if you are using outlook or what email program you are using it is usually easy to block a sender .

Love

----- Original Message -----

From: Lani

Sent: Saturday, May 25, 2002 8:12 AM

Subject: (unknown)

Is there anyway i can select emails to come in , Im getting too many from gigi and there of no interest to me. Can I at lease get hers to stop comming

lani

____________________________________________________ IncrediMail - Email has finally evolved - Click Here

[Guest guest]

Thats weird cause i only belong to yours and ilena .

lani

-------Original Message-------

From:

Date: Sunday, May 26, 2002 11:18:04 AM

Subject: Re: (unknown)

I don't get any email from Gi Gi that must be a different support group. You can block a sender if you want to or ask her to stop sending them to you.

Let me know if you are using outlook or what email program you are using it is usually easy to block a sender .

Love

----- Original Message -----

From: Lani

Sent: Saturday, May 25, 2002 8:12 AM

Subject: (unknown)

Is there anyway i can select emails to come in , Im getting too many from gigi and there of no interest to me. Can I at lease get hers to stop comming

lani

[Guest guest]

Misinterpretation of Stachybotrys Serology

CALIFORNIA DEPARTMENT OF HEALTH SERVICES

Environmental Health Investigations Branch

December, 2000

Background

Recently, both scientific inquiry and national news media attention have raised concerns about possible health consequences of human exposure to indoor mold growth. Much of this concern has been generated by discovery of toxigenic mold species in water-damaged buildings. Although not supported by the Centers for Disease Control and Prevention (CDC, 2000), recurring news coverage suggesting a link between the fungus, Stachybotrys chartarum (S. chartarum), and a series of infant pulmonary hemorrhage cases in Ohio continues to generate public anxiety about possible toxic fungal exposure in homes, schools and workplaces. Toxigenic fungi, including S. chartarum, may or may not produce toxins depending on several factors, including the specific fungal strain and the organic substrate it is metabolizing. Thus, isolation of a potentially toxigenic fungus from a building does not indicate that occupants have actually been exposed to mycotoxins. As there are no readily available methods to test building air or materials for mycotoxins, some patients have sought their physicians’ help to determine if they have been exposed to toxic indoor fungi.

Local health officers and other health care practitioners have requested assistance from medical personnel at the California Department of Health Services in interpreting the medical and environmental significance of S. chartarum serological tests. In some situations serum antibody concentrations to Stachybotrys chartarum (previously known as Stachybotrys atra) have been misinterpreted, leading to erroneous diagnoses, unwarranted biomonitoring and environmental testing, and arousing needless patient and community apprehension. The following information is provided to update health care providers regarding the use of this test method.

Is there a S. chartarum biomarker?

A urine or serum toxin-specific biomarker (as is available for aflatoxin, the carcinogenic metabolite of Aspergillus flavus) would be the ideal method to determine exposure to toxins produced by an indoor fungus. However, at this time there are no valid biomarkers for the toxins potentially produced by S. chartarum. Some physicians have used serum antibodies to S. chartarum antigens as an indicator of exposure (to the fungus or its toxins) and/or disease. S. chartarum serology is commercially available from only one laboratory in the United States. IBT Reference Laboratory in Lenexa, Kansas has developed an isotype-specific ELISA method to measure S. chartarum IgE, IgG and IgA. IBT has also determined the performance characteristics of these procedures. The United States Food and Drug Administration has not evaluated or approved these testing methods.

Like any other testing procedure used in clinical medicine, the validity of S. chartarum serology should be evaluated by determining its sensitivity, specificity, and especially its positive and negative predictive values prior to its widespread use. Research studies to provide this information have not yet been carried out. At this time, more carefully conducted studies are needed to determine the utility of S. chartarum serology for diagnosis of clinical disease or as an indicator of S. chartarum environmental exposure.

Fungal allergens – more problematic than pollen and other common antigens

Development of fungal serological methods has been hampered by difficulty in producing and working with fungal allergen extracts (Burge 1985, Horner et al. 1999). An individual fungal species is typically capable of producing many allergens. These allergens are variably produced depending on the fungal strain cultured, laboratory conditions, fungal growth stage and substrate being metabolized (Helm et al. 1987). Studies have shown considerable cross-reactivity among allergens of related fungal species and even genera (DeZubiria et al. 1990).

S. chartarum-specific serology – clinical diagnostic value

In general, antigen-specific IgA occurrence is not clinically relevant to diagnosis of allergic disease or hypersensitivity disorders, although it does have some utility in the work-up of certain systemic infections (Kishiyama 1999). Elevated IgE or IgG levels to well characterized fungal antigens (such as Alt a 1 from Alternaria alternata or Asp f 1 from Aspergillus fumigatus) along with appropriate history, physical exam findings and other diagnostic procedures can assist in diagnosing fungal allergy or hypersensitivity pneumonitis respectively. However, clinicians must recognize that most currently available commercial fungal immunological procedures have questionable specificity due to lack of purified or standardized fungal allergen extracts.

The IBT S. chartarum antigen was recently shown to cross-react with antibodies to Aspergillus fumigatus and Alternaria alternata, two common outdoor fungi (Halsey 2000). Thus, a positive S. chartarum test result does not necessarily mean the patient has developed antibodies to S. chartarum. Rather, the patient may have been exposed to an entirely different fungus that shares certain immunologic characteristics with S. chartarum.

In addition, studies evaluating the prevalence and concentration of S. chartarum antibodies in the general population have not been conducted. The IBT reference range for S. chartarum serologic tests was estimated by measuring the antibody responses of 41 adults with no known fungal-related disease. The upper threshold was set at two standard deviations above the mean. Therefore, the true range of antibody concentrations in the general public with no exposure to moldy buildings is not known.

Correlation of antibody prevalence with environmental S. chartarum exposure

Some clinicians have interpreted the presence of S. chartarum-specific IgA or IgG antibodies as evidence of recent or chronic exposure, respectively, to this fungus. Generally, IgA antibodies are relatively short-lived. However, the kinetics of IgA synthesis and breakdown show large inter-individual variability and also depend on exposure to related or cross-reacting antigens from other fungi (Halsey 2000). IBT Laboratory has also indicated that kinetics of decline for IgG antibodies are not predictable and cannot be used to establish the date of last exposure to S. chartarum or other fungal cross-reacting antigens. The demonstrated cross-reactivity of the S. chartarum antigen indicates that antibody response to this antigen cannot be used to prove exposure to this fungus.

S. chartarum serology – case study experience

Several case-control studies have utilized serology in office building investigations with documented presence of large amounts of S. chartarum. These investigations found no statistically significant differences in S. chartarum-specific IgG or IgE concentrations between exposed and control groups (Johanning 1996, 1999; Hodgson 1998). A recent case-control study of water-damaged or mold-contaminated homes in Finland found fungal-specific IgG concentrations in both cases and controls, with cases showing a tendency for higher antibody levels than the control group to most fungi (Hyvärinen 1999). However, the fungal species identified in the case homes frequently did not correlate with the most prominent fungal antibodies in case patients. Researchers have also found high levels of S. chartarum-specific IgG in some members of their control groups who had no evident exposure to this fungus in the home or workplace under investigation (Johanning 1996, Hyvärinen 1999).

Summary

The demonstration of mold-specific antibodies alone is generally considered insufficient to prove that health effects reported by individuals in moisture-damaged buildings are caused by mold exposure. Symptoms associated with mold exposure are nonspecific and vary greatly with individual susceptibility. There are currently no validated biomarkers of exposure to specific indoor fungi or their toxins. S. chartarum serology tests have no clinical application at this time. They cannot be used to imply the presence of S. chartarum within a home or workplace environment, nor can they be used to prove patient exposure to this specific mold or its toxins.

References:

Burge HA. Fungus Allergens. Clin Rev Allergy 34:131-3. 1985.

CDC. Update: pulmonary hemorrhage/hemosiderosis among infants---Cleveland, Ohio, 1993-1996. MMWR, 2000; 49(09); 180-4.

DeZubiria A, Horner WE, Lehrer SB. Evidence for cross-reactive allergens among basidiomycetes: Immunoprint-inhibition studies. J. Allergy Clin. Immunol. 86:26-33. 1990.

Halsey J. Performance of a Stachybotrys chartarum serology panel. Abstract of presentation at the Western Society of Allergy, Asthma and Immunology Annual Meeting. Aller Asthma Proceedings 21(3):174-5. 2000.

Helm RM, Squillace DL, Aukrust L, et al. Production of an International Reference Standard Alternaria Extract. I. Testing of Candidate Extracts. Int Arch Allergy Appl Immunol 82:178-89. 1987.

Hodgson MJ, Morey P, Leung W-Y, et al. Building-associated pulmonary disease from exposure to Stachybotrys chartarum and Aspergillus versicolor. J Occ Env Med 40(3):241-9. 1998.

Horner WE, Lehrer SB. Why are there still problems with fungal allergen extracts? in Bioaerosols, Fungi and Mycotoxins: Health Effects, Assessment, Prevention and Control, ed. Johanning E. Eastern New York Occ. & Env. Health Center, Albany, NY. pp 166-8. 1999.

Hyvärinen A, Reiman M, Meklin T, Husman T, Vahteristo M, Nevalainen A. Fungal exposure and IgG-levels of occupants in houses with and without mold problems. in Bioaerosols, Fungi and Mycotoxins: Health Effects, Assessment, Prevention and Control, ed. Johanning E. Eastern New York Occ. & Env. Health Center, Albany, NY. pp 166-8. 1999.

Johanning E, Biagini R, Hull D, Morey PR, Jarvis BB, Landsbergis P. Health and immunology study following exposure to toxigenic fungi (Stachybotrys chartarum) in a water-damaged office environment. Int Arch Occup Environ Health 68:207-18. 1996.

Johanning E, Landsbergis P, Gareis M, Yang CS, Olmsted E. Clinical experience and results of a sentinel health investigation related to indoor fungal exposure. Environ Health Perspect 107(suppl 3):489-94. 1999.

Kishiyama JL. Addendum 1 in Environmental health consultation: Review of environmental and clinical laboratory information for Saugus Unified School District. California Department of Health Services, Environmental Health Investigations Branch. 1999. (full text at: http://www.dhs.ca.gov/ps/deodc/ehib/EHIB2/topics/saugus.html )

postalman90 <postalman50@...> wrote: hi can someone tell me if there is blood test for mold mildew iwould be gratfull if anybody can help me on this ps i live in s jersey thanks billFAIR USE NOTICE:This site contains copyrighted material the use of which has not always been specifically authorized by the copyright owner. We are making such material available in our efforts to advance understanding of environmental, political, human rights, economic, democracy, scientific, and social justice issues, etc. We believe this constitutes a 'fair use' of any such copyrighted material as provided for in section 107 of the US Copyright Law. In accordance with Title 17 U.S.C. Section 107, the material on this site is distributed without profit to those who have expressed a prior interest in receiving the included information for research and educational purposes. For more information go to: http://www.law.cornell.edu/uscode/17/107.shtml. If you wish to use copyrighted material from this site for purposes of your own that go beyond 'fair use', you must obtain permission from the copyright owner.

[Guest guest]

Hello Postman:

Yes, you can have several tests done, our favorite is the IG and IGG for stachybotrus, you can also test for aspergillous and penicillium.

NTMC.

postalman90 <postalman50@...> wrote: hi can someone tell me if there is blood test for mold mildew iwould be gratfull if anybody can help me on this ps i live in s jersey thanks billFAIR USE NOTICE:This site contains copyrighted material the use of which has not always been specifically authorized by the copyright owner. We are making such material available in our efforts to advance understanding of environmental, political, human rights, economic, democracy, scientific, and social justice issues, etc. We believe this constitutes a 'fair use' of any such copyrighted material as provided for in section 107 of the US Copyright Law. In accordance with Title 17 U.S.C. Section 107, the material on this site is distributed without profit to those who have expressed a prior interest in receiving the included information for research and educational purposes. For more information go to: http://www.law.cornell.edu/uscode/17/107.shtml. If you wish to use copyrighted material from this site for purposes of your own that go beyond 'fair use', you must obtain permission from the copyright owner.

[Guest guest]

Hmm I am not sure what to do about this problem. Have you got it fixed or is

it still giving you problems?

----- Original Message -----

From: <hmb01@...>

< >

Sent: Thursday, June 27, 2002 11:28 AM

Subject: (unknown)

> My log in keeps coming up invalid. Therefore, I can't go to the various

> articles.Can you help? Also may I just subscribe to the digest. H. Bush

>

>

>

>

[Guest guest]

Shoot I think it may be cause you have web tv, someone else had this same

problem with webtv. Let me know if you cannot figure it out and I can send

you any articles that may be of interest to you.'

hugs

----- Original Message -----

From: <hmb01@...>

< >

Sent: Thursday, June 27, 2002 11:28 AM

Subject: (unknown)

> My log in keeps coming up invalid. Therefore, I can't go to the various

> articles.Can you help? Also may I just subscribe to the digest. H. Bush

>

>

>

>

[Guest guest]

When I joined every password I typed in came up invalid so I cannot view

any articles. I would like to try the digest form or unsubscribe because

I am getting about 100 postings a day. Way too much., can you send

me the article on therapies and detox,please.Helen

[Guest guest]

Gil,

Please be careful how you respond to inquiries since

some people are only lay that write on this site and

may not have your educational knowledge. We did not

know you were the forman of the site.

I assume it was you who complained before and probably

again. My understanding is that this sight is related

to any issues, health, remediation, environmental,

regarding Toxic Mold and Sick buildings.

Please do tell us more about your business and

services and don't leave us in the dark. Who are you,

and what do you do?

NTMC

--- Gil Vice <gilvice@...> wrote:

>

> If walls are cooler than the room, common for

> basements, the relative

> humidity (RH) at the wall will be higher than that

> measured at the warmer

> middle of the room. So, mold may grow on the walls,

> if they are dusty. This

> is more of a problem in basements with some paneling

> covering the concrete,

> particularly if there are minor walls cracks through

> which water can enter

> the home and remain hidden. With any paneling or

> drywall, RH at the wall may

> be 80-90% at the concrete and the back of the wall

> cover, even with good

> concrete, though center room RH is far lower.

> Ceilings do not have this problem, generally being

> warmer than the mid

> room temperature, thus lower RH. Ceiling tiles

> generally only become a

> problem when water drips on them. If you remain

> unsure of ceiling tiles,

> remove them, clean off the dust, and spray lightly

> with dilute Clorox.

> Re-install after drying.

>

>

> Date: Sat, 27 Jul 2002 01:11:38 -0000

> From: " topekajan " <topekajan@...>

>

> Subject: Re: Ceiling tile replacement - Advice

> requested

>

> This is good advice. And we have addressed this

> with 4 humidifiers

> and 4 meters. These were purchased while we lived

> in an apartment

> for 6 months. We are keeping the humidity levels

> below 50% and

> trying to stay closer to 45%. But we have felt that

> we need to be

> extra careful and would like to used suspended

> ceiling tiles that are

> not made of a material that mold uses for food.

>

>

> We would like advice/recommendations for the

> replacement of

> suspended ceiling panels in the basement of our

> remediated moldy house.

>

> We had standard ceiling panels that contained

> cellulose before

> remediation. They were in place since the house was

> built 8 years ago. We

> did not find any evidence of mold on them. However,

> we threw them all away

> anyway, just to be safe. We really don't want to use

> anything that could be

> eaten by mold or harbor mold spores (or worse yet,

> contain recycled

> materials that had mold in them). We are looking for

> ideas if anyone has

> knowledge or experience with this issue.

>

> Jan

>

>

>

>

>

>

_________________________________________________________________

> Chat with friends online, try MSN Messenger:

> http://messenger.msn.com

>

>

__________________________________________________

[Guest guest]

HI girl,

You have it too! Man too much. What a drag!

I hope you can find someone to help you with those implants, I cannot believe what you have been through!hugs

----- Original Message -----

From: JHH7

e_Rene@...

Cc:

Sent: Tuesday, August 06, 2002 10:18 PM

Subject: (unknown)

Hi e,

I have been a quiet member of the forum but I have to comment on the bone loss issue. I am only 34 and have osteo too.

I hear your concerns.

I have been told by many Dr's that you MUST take extra Vitamin D with the calcium for it to be absorbed correctly.

There are two things that may work well for you:

1. Fruit flavored chewable Calcium tablets that include the Vitamin D and necessary Minerals. These taste good and can be bought at any local store fairly inexpensive.

2. Viactiv Soft Chocolate Calcium Chews with Vitamin D

Hope this helps.

J-

[Guest guest]

Osteoporosis is a pretty general term for reduced bone density.

The question is "why" is it reduced? By the DEXA scan, bone

density is measured against that of a 30 year old woman--if

it falls above a certain point it is called osteoporosis and below that

point it is called osteopenia. There are a number of different disorders

that fall under the title of "osteoporosis" Anything that disturbs the

calcium balance, for instance, can cause it to happen--such as

a disturbance of the parathyroids, a renal defect or just plain

low mineralization. . .but find out why if that scan has any

indications whatsoever. The earlier you catch it, the better.

I had the same problem did--I was told I had osteoporosis

and had osteopenia. I wonder if he even looked at it? I was menopausal and had taken thyroid hormone (full) for seven years. . .

many women in my situation would have had osteoporosis for

those reasons. I had to push for a Vitamin D and magnesium test,

but once he agreed to it he also wanted to measure the alkaline

phosphatase (which was in range);this tells the doc something

too.

I suggest that younger woman who have had breast implants for

a lengthy period of time might check Vitamin D, magnesium, calcium

(by atomic absorption) and zinc levels, most particularly those who

had silicone breast implants. I know magnesium has consistently

been low with them--platinum will reduce it, among other things. Vitamin

D, being lipophilic is a real strong possibility--silicone is lipophilic also

and the lipid system is usually affected in some way. All of my

lipid measurements were low and I eventually lost visible fat in

asymmetric areas.

DEXA scans generally measure the spine and hips--if my doc is correct,

the spine is USUALLY the first affected. Mine was not--it was the hips--I

don't know if that's a clue or not, but the bone has regenerated and did

so in less than five years after taking the things on which I was low.

There was a time, not so long ago, that calcium and ionic calcium

were measured separately. If the ionic calcium (that in the bloodstream)

started moving up it was an early indication of a problem--because it was

being pulled out of the bones. The blood gets first dibs on calcium, as it

is needed for the nervous system. Some of the older docs still request

it with the standard chemistry tests, and if they send them to research

labs for results, I think they generally provide them also. Once you have

had the DEXA scan, though, I can't see where this would be helpful.

For those who are young and have no reason to have the DEXA, it might

be a forewarning that something is going on.

Get copies of these things yourselves and if you don't understand something,

ask the doc. . .he may be in error. . or you may wish to pursue the

issue further.

Bonnie

[Guest guest]

Do you have osteopenia or osteoporosis? I ask this cause when I first had my bone scan done my rheumatologist read it wrong, there I was being told that I had severe osteoporosis, advanced stage, I went into a fit, anyhow I had another Dr read the report and he explained it to me better, he said I had osteopenia not osteoporosis, which was a concern at my age but not as bad as the diagnosis that the other Dr gave me, it ticked me off that this other Dr made me think I was going to fall to pieces literally at any moment.

Anyhow I am just curious did you have a Dexa scan and if so did your Dr explain it to you, what the T scores and Z scores mean and all that?

Did they tell you why they felt you got this condition and also are you taking anything for it?

Well, let me know cause I am curious to see what other women with implants are being told about this. It sure is interesting to find this in so many young women.

Hugs

----- Original Message -----

From: JHH7

e_Rene@...

Cc:

Sent: Tuesday, August 06, 2002 10:18 PM

Subject: (unknown)

Hi e,

I have been a quiet member of the forum but I have to comment on the bone loss issue. I am only 34 and have osteo too.

I hear your concerns.

I have been told by many Dr's that you MUST take extra Vitamin D with the calcium for it to be absorbed correctly.

There are two things that may work well for you:

1. Fruit flavored chewable Calcium tablets that include the Vitamin D and necessary Minerals. These taste good and can be bought at any local store fairly inexpensive.

2. Viactiv Soft Chocolate Calcium Chews with Vitamin D

Hope this helps.

J-

[Guest guest]

In left cheeks (face and butt) I wouldn't worry about this if I were you, Patty.

I had silicone, grossly ruptured, and had ruptures in past that were never

cleaned out, four pair of implants, and still have capsules--and no treatment

whatsoever. It was a learn-as-you-go kind of thing. The fat loss came after

about eight? years. It was the least of the problems, trust me. By that time

I was already feeling so much better. The brain problems got me down the

most.

I took Calcium citrate, magnesium, Vitamin D and zinc and a whole lot of other things that I was already taking. I'm now

maintaining on MSM, Chondroitin sulfate and Glucosamine

sulfate. I've always been an incredible dairy and green veggie

consumer. And, BTW, collard greens are very high in calcium

But I can't stress enough how important it is to take care of the

bones NOW.. We have so many environmental chemicals going on

now that there is no telling what all they will do--not to mention that

you will be living a longer time than the generation before you. Toxins

don't just live in fats and blood--some live in bones. The bones below

your waist stop producing blood when you attain adulthood--I cannot

help but think there is some kind of correlation between that and the fact that osteo seems to start in the lower spine and hips--my doc can't

relate to this thought LOL Anyway, get started on those bones--they depend

on you.

Bonnie

[Guest guest]

Bonnie, what did you mean by

I eventually lost visible fat in asymmetric areas. ?

My DEXAScan showed osteopenia in my spine. I was told to up my calcium intake, but I haven't really done much of anything terribly proactive so far. I seem to react to calcium supplements negatively, so I need to find one I am happy with.

It is good to know that your condition reversed. What exactly did you take?

Thanks,

Patty

----- Original Message -----

From: Bos@...

Sent: Wednesday, August 07, 2002 10:37 AM

Subject: Re: (unknown)

Osteoporosis is a pretty general term for reduced bone density. The question is "why" is it reduced? By the DEXA scan, bone density is measured against that of a 30 year old woman--if it falls above a certain point it is called osteoporosis and below that point it is called osteopenia. There are a number of different disorders that fall under the title of "osteoporosis" Anything that disturbs the calcium balance, for instance, can cause it to happen--such as a disturbance of the parathyroids, a renal defect or just plain low mineralization. . .but find out why if that scan has any indications whatsoever. The earlier you catch it, the better. I had the same problem did--I was told I had osteoporosis and had osteopenia. I wonder if he even looked at it? I was menopausal and had taken thyroid hormone (full) for seven years. . . many women in my situation would have had osteoporosis for those reasons. I had to push for a Vitamin D and magnesium test, but once he agreed to it he also wanted to measure the alkaline phosphatase (which was in range);this tells the doc something too. I suggest that younger woman who have had breast implants for a lengthy period of time might check Vitamin D, magnesium, calcium (by atomic absorption) and zinc levels, most particularly those who had silicone breast implants. I know magnesium has consistently been low with them--platinum will reduce it, among other things. Vitamin D, being lipophilic is a real strong possibility--silicone is lipophilic also and the lipid system is usually affected in some way. All of my lipid measurements were low and I eventually lost visible fat in asymmetric areas. DEXA scans generally measure the spine and hips--if my doc is correct, the spine is USUALLY the first affected. Mine was not--it was the hips--I don't know if that's a clue or not, but the bone has regenerated and did so in less than five years after taking the things on which I was low. There was a time, not so long ago, that calcium and ionic calcium were measured separately. If the ionic calcium (that in the bloodstream) started moving up it was an early indication of a problem--because it was being pulled out of the bones. The blood gets first dibs on calcium, as it is needed for the nervous system. Some of the older docs still request it with the standard chemistry tests, and if they send them to research labs for results, I think they generally provide them also. Once you have had the DEXA scan, though, I can't see where this would be helpful. For those who are young and have no reason to have the DEXA, it might be a forewarning that something is going on. Get copies of these things yourselves and if you don't understand something, ask the doc. . .he may be in error. . or you may wish to pursue the issue further. Bonnie

[Guest guest]

You know, e, there has been, as far back as I can

remember, talk about osteo and implants. . .but your

doc's comment about Prednisone is worth some thought too.

If Prednisone can do that, cortisol can probably do it also.

And who knows how long we were kicking out cortisol

before our immune systems went wonky.

It has always been my understanding that Prednisone

is hard on the muscles, though.

Bonnie

[Guest guest]

, I did have a Dexa scan done, and while I don't have the actual report, my rheumy, my neurosurgeon, and the radiologist all reviewed it. This was done in Denver when I was there last wk. These docs are all docs I know very well and who know me very well. They explained to me that I had osteoporosis in a moderate stage. I did see the films where the radiologist pointed out to me areas that my bones are "brittle" and are thinning. I am waiting to hear from my rheumy about the exact scores and what exactly they mean. But I did clarify with them that I had osteoporosis and not osteopenia. All 3 docs said that it was very evident I have full blown osteoporosis. As for why I have it so early, the docs seem to think that it is glucocorticoid induced osteoporosis. I was taking prednisone for about 1 yr from 1999-2000, and that is when I was told I had mild osteoporosis. But that is also when I had lupus and was having flares so bad, and prednisone is the only thing that helped the flares. Now I wish I hadn't taken it, but I was in a bad spot then and was desperate for any kind of relief. On the other hand, my rheumy and neurosurgeon also are implicating implants as possibly causing this. The radiologist disagreed. But my rheumy and neurosurgeon have been through so much with me that they both feel that all of my health problems are related in some way to my implants. I guess we'll never know, but it's worth continuing to do research on implants and their possible link to osteoporosis. e ----- Original Message ----- From: Heer Sent: Wednesday, August 07, 2002 7:28 AM Subject: Re: (unknown) Do you have osteopenia or osteoporosis? I ask this cause when I first had my bone scan done my rheumatologist read it wrong, there I was being told that I had severe osteoporosis, advanced stage, I went into a fit, anyhow I had another Dr read the report and he explained it to me better, he said I had osteopenia not osteoporosis, which was a concern at my age but not as bad as the diagnosis that the other Dr gave me, it ticked me off that this other Dr made me think I was going to fall to pieces literally at any moment. Anyhow I am just curious did you have a Dexa scan and if so did your Dr explain it to you, what the T scores and Z scores mean and all that? Did they tell you why they felt you got this condition and also are you taking anything for it? Well, let me know cause I am curious to see what other women with implants are being told about this. It sure is interesting to find this in so many young women. Hugs ----- Original Message ----- From: JHH7 e_Rene@... Cc: Sent: Tuesday, August 06, 2002 10:18 PM Subject: (unknown) Hi e, I have been a quiet member of the forum but I have to comment on the bone loss issue. I am only 34 and have osteo too. I hear your concerns. I have been told by many Dr's that you MUST take extra Vitamin D with the calcium for it to be absorbed correctly. There are two things that may work well for you: 1. Fruit flavored chewable Calcium tablets that include the Vitamin D and necessary Minerals. These taste good and can be bought at any local store fairly inexpensive. 2. Viactiv Soft Chocolate Calcium Chews with Vitamin D Hope this helps. J-