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Hi Bev - You'll be hearing from several from this list who have MCTD. It

is a mixture of the rheumatic diseases and varies. The symptoms are much the

same no matter what and they all cross over which is why it's so hard to

diagnose. My Mom has MCTD and her's actually is scleroderma, lupus and

myositis. I'll think you'll hear from others in this group who have

a different combo. I think it's RTC who has some excellent

information on MCTD (brain fog - so I'm not sure). If you were on minocin

when your doctor thought you had

RA, I'm suprized he has changed your meds. AP is still the best treatment

choice.

My Mom has taken only oral doxycycline for hers and has done very well. Let

us know. Judy

rheumatic MCTD

> Hello All!

>

> As I posted in an earlier post to the group, my new RD has told me I have

> MCTD and I don't know much about it. Apparently I don't have RA now.

Who

> knew it would disappear and leave this mess??

> Any thoughts or support would be appreciated. I am supposed to take

Vioxx

> and Metho and no Minocin. Are there many on the list with this disease?

>

> Bev

>

>

> To unsubscribe, email: rheumatic-unsubscribeegroups

>

>

>

>

>

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In a message dated 10/03/2000 7:52:40 PM Eastern Daylight Time,

deejay@... writes:

<< My Mom has MCTD and her's actually is scleroderma, lupus and

myositis. I'll think you'll hear from others in this group who have

a different combo. I think it's RTC who has some excellent

information on MCTD (brain fog - so I'm not sure). If you were on minocin

when your doctor thought you had

RA, I'm suprized he has changed your meds. AP is still the best treatment

choice.

My Mom has taken only oral doxycycline for hers and has done very well. Let

us know. Judy >>

Hi Judy,

Thanks so much for the reply. My original RD said RA or PA and hated me on

the AP so I had my gp treating me. Originally when I had my bloodword done,

they were throwing around an idea it might be lupis but when I saw the RD he

said RA. This is a completely new RD, one that I'd never seen before and

taking a fresh look. I wouldn't have thought the RA could just disappear,

but she says I don't have it, and this is just by a physical exam. We'll see

when the bloodwork comes back. She said definitely no more Minocin, but I

don't know if she would accept Doxy. I've thought for awhile I would rather

take the Doxy anyway, after all the fungus problems and the darned constant

stuffy nose. My gp looked at me like I was nuts when I suggested Doxy, so I

just dropped it. It is hard enough to get a regular doctor inthe rural

areas in Canada and getting one to prescribe the Doxy seemed against all odds.

I'll do some more homework and see what I can come up with.

Sure appreciate your post. :>) Makes me feel a lot better and no so

panicky.

Hugs

Bev

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In a message dated 10/04/2000 7:15:59 AM Eastern Daylight Time,

cadlard@... writes:

<< Dear Bev,

Janene has a diagnosis of 'scleroderma, possibly mixed connective tissue

disease (MCTD)' and that's the closest to a diagnosis she ever got. From

her symptoms she has scleroderma, RA and polymyositis/fibromyalgia (CPK

level is up). So it's a mixture of several types of rheumatic disease, or

often a catch-all phrase because the doctor can't make up his mind what

you have. You're not really in any different position than you were when

the diagnosis was RA, if that makes you feel any better :)

If there is any lupus component in your case, you would be better off

taking doxycycline or erythromycin. There have been a very small number of

cases where lupus symptoms have been made worse by minocycline - so small

that many doctors still use minocycline. But doxycycline or erythromycin

avoid that small risk. Doxycycline is taken at the same dose as you were

on with minocycline and is probably the next best antibiotic to use.

So the antibiotics plus herbals/acidophilus/etc. that we all talk about is

still the approach for MCTD. Perhaps your doctor would phone Dr.

Armstrong in Ontario as she would explain the rationale for the therapy?

Or you might like to talk to her yourself? Her phone number is Canada

613-721-9800. >>

Dear

Thank you so much for your prompt reply. I have the same feeling as when I

was first diagnosed and feel so uninformed and in the dark. I appreciate

your suggestions and it's good to know you people in the group are here.

When I mentioned to this RD, Dr. Janet Pope, in London, Ontario, I had been

on Minocycline she didn't seem too surprised or upset as my previous RD had

been, but was more concerned why I had stopped the Metho. I told her my gp

wanted me to stop the Metho to see if the Minocycline was working. I am

hoping she will go for the Doxy and will ask her about it. I was

contemplating calling Armstrong also, but it is a nine hour drive to

see her. If I have to I'll do it.

Thanks again, Chris.

Bev

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Dear Bev,

Janene has a diagnosis of 'scleroderma, possibly mixed connective tissue

disease (MCTD)' and that's the closest to a diagnosis she ever got. From

her symptoms she has scleroderma, RA and polymyositis/fibromyalgia (CPK

level is up). So it's a mixture of several types of rheumatic disease, or

often a catch-all phrase because the doctor can't make up his mind what

you have. You're not really in any different position than you were when

the diagnosis was RA, if that makes you feel any better :)

If there is any lupus component in your case, you would be better off

taking doxycycline or erythromycin. There have been a very small number of

cases where lupus symptoms have been made worse by minocycline - so small

that many doctors still use minocycline. But doxycycline or erythromycin

avoid that small risk. Doxycycline is taken at the same dose as you were

on with minocycline and is probably the next best antibiotic to use.

So the antibiotics plus herbals/acidophilus/etc. that we all talk about is

still the approach for MCTD. Perhaps your doctor would phone Dr.

Armstrong in Ontario as she would explain the rationale for the therapy?

Or you might like to talk to her yourself? Her phone number is Canada

613-721-9800.

And, just to stir up more discussion ( :) you can get the doxycycline

legally from the net if that's the only way. Let me know if you need the

contacts.

Chris.

On Tue, 3 Oct 2000 Bryarwoode@... wrote:

> Hello All!

>

> As I posted in an earlier post to the group, my new RD has told me I have

> MCTD and I don't know much about it. Apparently I don't have RA now. Who

> knew it would disappear and leave this mess??

> Any thoughts or support would be appreciated. I am supposed to take Vioxx

> and Metho and no Minocin. Are there many on the list with this disease?

>

> Bev

>

>

> To unsubscribe, email: rheumatic-unsubscribeegroups

>

>

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Bev, I have dermatomyositis and in mid 1999 I had a complete hematology done

by oncology and was told by the oncologist that I have MCTD as well. Since I

am taking minocycline he did not mention taking anything else. I also have

lymphoma and am undergoing chemo at the present time so that may have been

one reason why he did not persue the MCTD diagnosis. My rheumie left to

teach in Minneapolis and I have an appointment with a new one on Oct. 23rd

and will mention it to him and find out more then. My GP figured that the

mino should help with MCTD as well as the dm. HTH Carol/piney

rheumatic MCTD

> Hello All!

>

> As I posted in an earlier post to the group, my new RD has told me I have

> MCTD and I don't know much about it. Apparently I don't have RA now.

Who

> knew it would disappear and leave this mess??

> Any thoughts or support would be appreciated. I am supposed to take

Vioxx

> and Metho and no Minocin. Are there many on the list with this disease?

>

> Bev

>

>

> To unsubscribe, email: rheumatic-unsubscribeegroups

>

>

>

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In a message dated 10/04/2000 3:41:15 PM Eastern Daylight Time,

bzarn@... writes:

<< Bev, I have dermatomyositis and in mid 1999 I had a complete hematology

done

by oncology and was told by the oncologist that I have MCTD as well. Since I

am taking minocycline he did not mention taking anything else. I also have

lymphoma and am undergoing chemo at the present time so that may have been

one reason why he did not persue the MCTD diagnosis. My rheumie left to

teach in Minneapolis and I have an appointment with a new one on Oct. 23rd

and will mention it to him and find out more then. My GP figured that the

mino should help with MCTD as well as the dm. HTH Carol/piney >>

Hi Carol,

Thanks so much for the reply. You seem to be going through a lot right now.

I hope your new RD is a good one and doesn't change your meds if they are

working. I just woke up short of breath and don't know if it is because we

had such a busy day yesterday or I have a urine infection or my disease. I

hate that feeling.

Carol, are you on Minocycline only? What about Methotrexate or an anti

inflammatory? I was supposed to start my Metho last night but put it off

til Friday. I wished I didn't have the fungus problem which I put down to

the Minocycline, or I would be on it still also.

Good luck with the chemo, Carol. Please let me know what the new RD says.

Hugs

Bev

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In a message dated 10/05/2000 12:34:55 PM Eastern Daylight Time,

slfain@... writes:

<< Bev, You would probably have the fungus problem with or without the

antibiotics. Over at the scleraderma digest, only maybe one per cent of us

there are on antibiotic therapy but 100 per cent of them are bubbling over

with

yeast and fungus. I have been thinking of this for a long time - the

chicken and

the egg theory. You just have to fight the fungus and yeast more

aggressively.

I take aloe vera and colloidal silver, grapefruit seed extract and

primadolphalis

twice daily. Actually I do the grapefruit seed extract three times a day.

And I

do the tea tree oil twice daily FAITHFULLY.

Your question about why I put the oil on the soles of my feet:: The

soles of

the feet make the best recepticale for the oil in that within seconds, the

oil

penetrates into the blood stream and gets to throughout te body.

Occasionally,

my sinuses will be sort of stopped up and if I place peppermint on my

forehead or

behind my ears, I am quickly open and breathing well, or if I feel the

heaviness

in my chest - not ever any trouble breathing - then I will put a couple of

drops

on my chest. Hope this helps, Bev. Hugs,

>>

,

It could be that I would have the fungus with or without AP, but because of

the serious problems I had with it and because it has eased so much I do put

it down to the Minocycline. Even my brown fungal toenail is growing in

normally and this is after stopping the Minocycline. So that is a good case

for blaming the Mino. There are other antibiotics I can take so it is not

that I'm throwing in the towel. Just that I am very leary of taking

anything right now. I have lost 20% of thehearing in my ear and my nose on

that side is always stuffed up. I never had the operation because I want to

find out what is going on there before they patch my ear. I sure don't want

to cover up a problem and have it festering away. So I have to wear an ear

plug when I wash my hair or have a shower but that's okay with me and I am

always saying " what did you say " to people who talk to me on that side of me.

As for the Tea tree oil, I did put it on my toe one time and it was so

strong, I was worried about it getting into the bloodsteam because I had a

cut right across the nail, so I didn't use it again. I am so leary of meds

and treatments that are new. The peppermint oil sounds good though. I am

looking into it.

Thanks for the information .

Love

Bev

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Hi Liz,

Thanks for the nice post. You are certainly right about the overlapping

symptoms. I didn't feel so bad when I didn't know I had this. Weird, eh!

I wonder if it is suggestive conditioning because she did ask me several

times if I had shortness of breath and I said a little but then added I think

I have a urine infection and also thyroid, so shortness of breath isn't new

to me, but I haven't had it for a long time.

It actually woke me up during the night and I did the e-mail thing at 5 a.m.

Then went back to sleep and slept like a log til 7:30. I didn't know fibro

would interupt your sleep. That is interesting. I used to go to sleep and

not wake up til morning but now I wake up several times a night. I ended up

sleeping on the couch downstairs and have the tv on and when I awaken I watch

tv and get sleepy again, and this is repeated several times. Get to watch a

lot of good tv tho because everything good is on late at night. :>)

I am on no meds except my thyroid meds and the only x-rays she ordered are of

my feet and hands which are the main things limiting me. I will call her

about the shortness of breath tho and see what she says. I have had it many

times over the years, especially when I used to get panic attacks, which yu

can relate to and also when I had undiagnosed thyroid disease. Also,

has a cold and I have a phlegmy throat on and off, so it could be from many

things. It will all get sorted out eventually. Maybe you shouldn't take

metho or Vioxx if you have breathing problems. I'll check with her.

Thanks again Liz for offering such caring support.

Love

Bev

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Bev, You would probably have the fungus problem with or without the

antibiotics. Over at the scleraderma digest, only maybe one per cent of us

there are on antibiotic therapy but 100 per cent of them are bubbling over with

yeast and fungus. I have been thinking of this for a long time - the chicken

and

the egg theory. You just have to fight the fungus and yeast more aggressively.

I take aloe vera and colloidal silver, grapefruit seed extract and

primadolphalis

twice daily. Actually I do the grapefruit seed extract three times a day. And

I

do the tea tree oil twice daily FAITHFULLY.

Your question about why I put the oil on the soles of my feet:: The soles

of

the feet make the best recepticale for the oil in that within seconds, the oil

penetrates into the blood stream and gets to throughout te body. Occasionally,

my sinuses will be sort of stopped up and if I place peppermint on my forehead

or

behind my ears, I am quickly open and breathing well, or if I feel the heaviness

in my chest - not ever any trouble breathing - then I will put a couple of drops

on my chest. Hope this helps, Bev. Hugs,

Bryarwoode@... wrote:

> In a message dated 10/04/2000 3:41:15 PM Eastern Daylight Time,

> bzarn@... writes:

>

> << Bev, I have dermatomyositis and in mid 1999 I had a complete hematology

> done

> by oncology and was told by the oncologist that I have MCTD as well. Since I

> am taking minocycline he did not mention taking anything else. I also have

> lymphoma and am undergoing chemo at the present time so that may have been

> one reason why he did not persue the MCTD diagnosis. My rheumie left to

> teach in Minneapolis and I have an appointment with a new one on Oct. 23rd

> and will mention it to him and find out more then. My GP figured that the

> mino should help with MCTD as well as the dm. HTH Carol/piney >>

>

> Hi Carol,

>

> Thanks so much for the reply. You seem to be going through a lot right now.

> I hope your new RD is a good one and doesn't change your meds if they are

> working. I just woke up short of breath and don't know if it is because we

> had such a busy day yesterday or I have a urine infection or my disease. I

> hate that feeling.

>

> Carol, are you on Minocycline only? What about Methotrexate or an anti

> inflammatory? I was supposed to start my Metho last night but put it off

> til Friday. I wished I didn't have the fungus problem which I put down to

> the Minocycline, or I would be on it still also.

>

> Good luck with the chemo, Carol. Please let me know what the new RD says.

>

> Hugs

>

> Bev

>

>

> To unsubscribe, email: rheumatic-unsubscribeegroups

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Bev,

I wonder if we all wouldn't have one foot (figuratively speaking : ) in a

similar diagnosis. I say this because I have a lot of symptom overlap with

other rheumatic diseases--the sausage toes that go with PA, the reverse

curvature and tendon insertion swelling that goes with AS, the sleep

problems that go with fibro, and so on. I would not let the new diagnosis

alarm you, rather try and see it as a just another name for the same

process.

I am worried about what you say about the shortness of breath though. Can

you connect it with any other symptoms?--like meds or other irritants you

may be having allergic reactions to, stomach pain (shortness of breath can

accompany stomach problems from nsaids, etc.) Have they ordered a lung

x-ray? I would ask for one, in case it is the rheumatic stuff affecting

your lungs. Collar the doc about this symptom, and insist they address it.

If it gets any worse with the MTX--call the doc right away and report it.

MTX can affect the lungs, and I worry about them starting you on it when you

already have shortness of breath--on the other hand, if you are having lung

trouble from RA or MCTD, maybe it will get better--that is my hope for you.

Are you doing any of the alternative things the group recommends to fight

fungus--like the grapefruitseed extract? diet? and so on--it couldn't hurt

and may help.

Keep us posted how you are doing--I'm sending prayers, healing thoughts,

and a cyber-cuppa tea your way--now find a warm spot in the sun, or tuck up

in bed--and get loads of rest! {{{{{{{{{{{{{{Bev}}}}}}}}}}}} Liz G

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- Thanks so much for sharing about the tea tree oil, and peppermint.

My daughter is away at college & has a bad cold & allergies bothering her.

Gonna see if I can get some to mail to her. Have a huge amount of mint in my

backyard (it WAS a garden at one point.... ) Must be a way to make that into

the liquid drops....

Lyn

----------------------

>

>Bev, You would probably have the fungus problem with or without the

>antibiotics. Over at the scleraderma digest, only maybe one per cent of

>us

>there are on antibiotic therapy but 100 per cent of them are bubbling over

>with

>yeast and fungus. I have been thinking of this for a long time - the

>chicken and

>the egg theory. You just have to fight the fungus and yeast more

>aggressively.

>I take aloe vera and colloidal silver, grapefruit seed extract and

>primadolphalis

>twice daily. Actually I do the grapefruit seed extract three times a day.

>And I

>do the tea tree oil twice daily FAITHFULLY.

> Your question about why I put the oil on the soles of my feet:: The

>soles of

>the feet make the best recepticale for the oil in that within seconds, the

>oil

>penetrates into the blood stream and gets to throughout te body.

>Occasionally,

>my sinuses will be sort of stopped up and if I place peppermint on my

>forehead or

>behind my ears, I am quickly open and breathing well, or if I feel the

>heaviness

>in my chest - not ever any trouble breathing - then I will put a couple of

>drops

>on my chest. Hope this helps, Bev. Hugs,

>

>Bryarwoode@... wrote:

>

> > In a message dated 10/04/2000 3:41:15 PM Eastern Daylight Time,

> > bzarn@... writes:

> >

> > << Bev, I have dermatomyositis and in mid 1999 I had a complete

>hematology

> > done

> > by oncology and was told by the oncologist that I have MCTD as well.

>Since I

> > am taking minocycline he did not mention taking anything else. I also

>have

> > lymphoma and am undergoing chemo at the present time so that may have

>been

> > one reason why he did not persue the MCTD diagnosis. My rheumie left to

> > teach in Minneapolis and I have an appointment with a new one on Oct.

>23rd

> > and will mention it to him and find out more then. My GP figured that

>the

> > mino should help with MCTD as well as the dm. HTH Carol/piney >>

> >

> > Hi Carol,

> >

> > Thanks so much for the reply. You seem to be going through a lot right

>now.

> > I hope your new RD is a good one and doesn't change your meds if they

>are

> > working. I just woke up short of breath and don't know if it is because

>we

> > had such a busy day yesterday or I have a urine infection or my disease.

> I

> > hate that feeling.

> >

> > Carol, are you on Minocycline only? What about Methotrexate or an anti

> > inflammatory? I was supposed to start my Metho last night but put it

>off

> > til Friday. I wished I didn't have the fungus problem which I put down

>to

> > the Minocycline, or I would be on it still also.

> >

> > Good luck with the chemo, Carol. Please let me know what the new RD

>says.

> >

> > Hugs

> >

> > Bev

> >

> >

> > To unsubscribe, email: rheumatic-unsubscribeegroups

>

>

>

>To unsubscribe, email: rheumatic-unsubscribeegroups

>

>

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Hi Bev: I was wondering what was happening with you and am so sorry you are

going through all this. Just wanted to mention that you are smart to take

the metho on weekends since, in my experience, it really made me extremely

tired the following day. With all that work you do (wow, don't know how you

do it!), you might get real fatigued. We all would like our weekends to

enjoy but there is nothing worse than what I use to refer to as my " metho

fog " when trying to work. Hang in there, Bev. I'm saying a prayer for you.

Babs

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, Lin,

That is an idea Lin. Could you make your own peppermint from the plants or

would it be too much work for what you'd get. If it is possible, at least

you would get pure peppermint.

Bev

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In a message dated 10/04/2000 4:16:03 AM Pacific Daylight Time,

cadlard@... writes:

<< And, just to stir up more discussion ( :) you can get the Doxycycline

legally from the net if that's the only way. Let me know if you need the

contacts. >>

Please print the contacts :-) It breaks my heart and makes me concerned

people who want to try this treatment are denied the antibiotics. Around the

world for some people getting antibiotics is harder than getting narcotics

for the pain. This is wrong IMHO. I would like to have that web address on

how to get the Doxycycline off the web. I can get mine from the pharmacy, but

some people have trouble getting them prescribed. Thanks,

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Would this be like infusion? I am not sure how you would be able to do it but

I grow mint every summer, too, so this sounds interesting. Maybe we can all

slooth through herbal remedy books at the book stores and report back. First

one with info is the winner.... Hugs,

Bryarwoode@... wrote:

> , Lin,

> That is an idea Lin. Could you make your own peppermint from the plants or

> would it be too much work for what you'd get. If it is possible, at least

> you would get pure peppermint.

>

> Bev

>

>

> To unsubscribe, email: rheumatic-unsubscribeegroups

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You could make an oil infusion. Fill a jar loosely with clean mint

leaves, add a neutral oil like almond, for instance, to cover the leaves

completely, and let it sit in a warm place for about 4-5 days, shaking

occasionally, then strain. It would not be as strong as the essential

peppermint oil, but it is usually recommended you not put mint essential

oil, or any essential oil for that matter, on the skin without diluting it

down in a carrier oil--it can be irritating. You could make a salve of it

by adding melted beeswax to the oil infusion. If you are going to try the

salve, and need more detail, I have a book on the subject and can write

more detail instructions if you ask. The essential oil is distilled, so is

stronger, but a bottle of it in a health store is usually cheap, and goes a

long way if you dilute it with other oils.

You could also make an alcohol tincture by substituting grain alcohol, or

any strong, neutral alcohol, let sit several days, strain and store in a

dark place. If you are keeping it a long time, you may want to preserve it

by adding some glycerine. Tinctures can be used internally, usually diluted

in warm water.

And of course, there is my favorite kind of mint infusion--with hot water,

that is, mint tea, LOL. Put some fresh or dried leaves in a tea strainer and

let it sit a few minutes. I love it and drink it a lot, especially in the

winter if I have a cold or stomach flu. The book I have also gives

instruction how to make lozenges with different herbs, but that involves

using a lot of sugar. HTH Liz G

> Would this be like infusion? I am not sure how you would be able to do

it but

> I grow mint every summer, too, so this sounds interesting

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Bev - I've dried some - very easy, just wash the stems, like salad, then

spin in salad spinner. I put all of it on a tray, & put it out of the way,

like on top of the refrig. til dried. As for tea, all ya gotta do is snip

some leaves, or stems, wash real good, and seep in hot water.

When I get a chance, I'm going to do some research on how to make the drops.

I think you are supposed to use vodka or some kind of alcohol like that.

Since you use so little, the alcohol content is really insignificant.

I've always read to make sure to grow mint in containers, as it spreads

something awful. I didn't, because we've got so many weeds, I figure, hey,

might as have something useful battle for the space out there!!

Lyn

================

>, Lin,

>That is an idea Lin. Could you make your own peppermint from the plants

>or

>would it be too much work for what you'd get. If it is possible, at least

>you would get pure peppermint.

>

>Bev

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  • 4 years later...
Guest guest

Hello..

Anyone diagnosed with MCTD using LDN presently? It is hard for me to

get my Dr.'s to prescribe drugs that they do not approve/discover

first. How might I find a Dr. willing to do this?

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Guest guest

Is MCTD a condition for which LDN is useful? Print

out the LDN home page and take to a GP who is

comfortable in his own skin---doesn't need to impress

anyone that he is GOD. The very nice GP who gave me a

year's prescrip last Friday at local clinic said no

one should have problem getting LDN. ( NOT aspirin or

Motrin which cause internal bleeding,) Prescrip faxed

to Skip's in Boca Raton, Fla and spoke with Skip

personally. He advises avoiding specialists---they

have only the expensive pharmaceuticals in their

field. They are subsized by drug companies and act as

spokesmen at conferences. My parents yelled loud and

long that Wilford Hall, Lackland AFB, killed their

friend, a retired Air Force officer who checked into

Wilford Hall following a heart attack. He was about

to be released after a recovery from the heart attack

when he developed uncontrolable internal bleeding. My

parents were visiting when my mother looked at the

friend's hospital chart and saw he was receiving

" Motrin " ! She showed the man's wife who told my

mother to " shut up and mind her own business " !

Mom kept her mouth shut and the hapless man died of

internal bleeding. My relatives have had close calls

with confused orders for amputation and/or insulin. I

had a heat flare last July 3-4 and was hospitalized

overnite. As soon as I was in a bed, I was brought

pills for " stress ulcers. " I refused them .

In the morning, I was brought pills for " acid reflux "

I have enough stomach acid to digest my food and

NEVER have indigestion! I recall Medicare being

billed for " self administered " medication. I took

NOTHING!! Medical bills are out of sight and no

wonder. Find a friendly General Practitioner who

doesn't need to impress anyone. shylotz@...

--- Amber <glenda@...> wrote:

>

> Hello..

>

> Anyone diagnosed with MCTD using LDN presently? It

> is hard for me to

> get my Dr.'s to prescribe drugs that they do not

> approve/discover

> first. How might I find a Dr. willing to do this?

>

>

>

>

__________________________________

Celebrate 's 10th Birthday!

Netrospective: 100 Moments of the Web

http://birthday./netrospective/

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