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Hi Connie.

Wow! You have pretty clearly been saving up the emails. your latest

may qualify for the longest post in the history of the group! All

good stuff, though.

In terms of tapering the prednisone, unfortunately I can't cut a

corner off the pill -- the darned things are round! I do have both

the 1mg and 5mg sizes. And I have cut them in half during the first

round of reducing the dose. But a lot more seriously, I did discuss

how the taper should be done with my doctor. I currently take even

doses of the stuff, half in the morning and half in the evening. I've

noticed that there have been recommendations around the various

boards that you should be proceeding on a two-day cycle, where you

get more one day and less the next, to either match your body's

normal production from the adrenal gland, or to get you used to lower

doses and " train " you for the next drop in dosage.

My rheumatologist feels that at present we should stick with the even

distribution (4 in the morning, 4 in the evening, with no change from

day to day). He's pointed out that I currently have no real muscle

problems, just some skin involvement, sore fingertips, and, of

course, that dratted " possible " hip bone stuff. The only reason he is

not dropping my prednisone dosage more rapidly is that the skin and

finger conditions indicate to him that I would almost certainly flare

and again have muscle problems. And, as he noted, I am going to the

gym regularly again, lifting some fairly hefty weights (for a scrawny

runner type of person), doing a pretty intense half-hour or so on the

exercise bike, and also managing to work full-time. In other words, I

am a very successful example of standard treatment. So he doesn't

want to get fancy with the tapering dosages until I get a bit lower.

He is still reasonably hopeful that I will either get off the

prednisone entirely or be able, with the aid of meth or similar

stuff, to make do with a much lower amount than my current 8 a day.

Another MRI in late summer or early fall will clear up the hip

question, too.

I hope things go well with you, and that your daughter enjoys her

summer of work. By the way, good luck in trying to set a curfew time

for a college girl!

Stay cool.

Mike B

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Hi Mike :-)

your latest may qualify for the longest post in the history of the group!

I try my best!

In other words, I am a very successful example of standard treatment. So he doesn't want to get fancy with the tapering dosages until I get a bit lower. He is still reasonably hopeful that I will either get off the prednisone entirely or be able, with the aid of meth or similar stuff, to make do with a much lower amount than my current 8 a day.

Mike, I'll be next in line (after you and your wife and family) to be thrilled if and when your current treatment works for you. You just might be able to pull it off. It really sounds like you're doing better than most.....could it be your stubborn-ness? :-) I have a good Canadian friend who's about as stubborn as they come and nobody wants to go against Bernadette!

Seriously, though....it would be wonderful if you could decrease the pred and not have to linger with the meth or anything else for too long. The thing that bothers me the most (other than the lack of success in many cases) is the fact that the immune suppressing drugs do a good job at suppressing the immune system all right.....to the point that the possibility other infections and cancers are increased. That sort of bothers me...... I agree, antibiotics are not a perfect solution, but they work and they don't cause cancer (as far as I know.) Even Dr. McPherson Brown, the "inventor" of the abx treatment agreed that there should be something besides abx to combat the mycoplasma. There are other people working on various ways to rid the body of these infections, or at least eliminate their negative aspects. At least for now, the Arthritis Foundation is giving credence to Minocin for RA.....it's a start.

I hope things go well with you, and that your daughter enjoys her summer of work. By the way, good luck in trying to set a curfew time for a college girl!

Thanks, Mike :-) Hopefully, our curfew-challenging days are a thing of the past (at least with a, we still have 16 year old , who "forgets" every now and then :-) I remember well a's high school days, however.....she told me I was the meanest mother she'd ever had....just because I wouldn't let her stay away, doing who knows what, all hours of the night. So far this summer she comes home at an almost reasonable time.....maybe it's because she had her tonsils out two weeks ago and she's not quite recovered....oh, I hope not! Also.....she has to be at work at 7:00am, starting today, heh, heh.

Anyway.....I hope your kids treat you kindly this summer. Remember.....choose your battles carefully :-) and take care,

Connie

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Connie,

Mrs. Snitley! That's a good one. LOL You couldn't of made up a better

name for her.

does have a short attention span in group situations. Has a hard time

sitting still. Perhaps it is because of the prednisone or maybe that's just

and the fact that he is only 5! Ms. Amy actually told me that he is

above age level for his small motor skills, (writing, cutting, coloring

etc...) but he is only average for his large motor skills. He's a little

behind the other kids. I looked at her and sarcastically said, " You think? "

Again, I got the blank stare and confusion. I said, " We're blessed he

even walks " . A little dramatic perhaps but she said, " Oh, that's right " .

She got a report from me almost daily when I dropped him off. " He seems

overly tired today, he is too tired to stay for playground time, he's

complaining of pain in his right hip... etc...) I am not sure what the

conference was to prove or where her brain disappeared to. is a whiz

on the computer and we provide only educational games. I am sure he spends

more time then the average kid as he doesn't get to play outside alot,

especially in this heat. Jeff and I were laughing because I told Ms. Amy he

was reading at home. I just didn't tell her that that the words he can read

are: play, fast forward, rewind, pause, quit, install, delete, stop, Windows

95, courser, etc.... LOL Oh yeah....Mc's... first word all children

learn to read!

Hugs,

Cari

>

>Reply-To: OurMyositis

>To: <OurMyositis >

>Subject: Catching up :-)

>Date: Mon, 4 Jun 2001 09:50:34 -0700

>

>Hi Everyone :-)

>

>It looks as if lots of you've been busy posting these past few

>days......good! We had a bit of a busy weekend.....and now I'm trying to

>get caught up with the mails, so I'll try to get to each one in bits and

>pieces......

>

>.....I know you must all feel so badly for the fawn, but try to

>remember that there are so many things that could be connected to the

>story. Maybe the fawn was sick or injured, and hence, the reason he was in

>the standing water. Maybe another animal had already gotten to

>him?....there are so many possibilities. These sorts of things happen

>every day in the natural world and it's sometimes very difficult to

>understand. You guys did your best, and were very compassionate, too.

>That's all anyone or anything can ask of you.

>

>Also, I hope your joint aches and pains are lessening. Isn't it difficult

>to try to figure out just what is what?? I remember in the early days,

>trying to describe to my doc exactly just what was happening......it was

>really difficult to discern at times if I had joint or muscle pain. I know

>what you mean about those bony areas.....tank tops are not very flattering

>for me LOL

>

>

>.....I sure hope you can make this latest episode as painfree as

>possible. You mentioned that Freak said he would let you call the shots

>and give you whatever you want. Now's your chance! :-) make the guy work

>for you! There's no way he can't agree (grammar check here) that the

>antibiotics are less damaging than anything else he has to offer. Maybe he

>will prescribe it on a trial basis....some docs will, and no matter how

>reluctant they are doesn't really matter because you'll get better and show

>him that it works. If you can't make any headway with Freak, or even the

>new docs, you might have luck with your GP. They are, in many cases, much

>more open to the idea. You can have your rheumies still monitor you (and

>let them think that they are " doctoring " you :-) As with most treatments,

>the earlier the better.....don't let these guys cheat you out of something

>that works. (OK.....lecture is over. I just want to wring some of these

>doc's necks! Just know that I care, OK?)

>

>

>Vicki, bless your heart! Whatever you do, don't ever lose that fighting

>spirit of yours! If I can help you in any way, please let me

>know......and in the meantime, you and I will keep fishing out those

>articles, right? In all honesty, I can see why your doc would be

>reluctant to try anything with you.....I'm sure he's afraid of doing more

>harm than good. Also, many rheumatic sufferers who start the abx notice

>the die-off or Herxheimer reaction that I've mentioned previously. Those

>who buy into the mycoplasma theory (I do :-) feel that it is just a product

>of the mycoplasma dying off and creating a toxin as they die. Well, in

>your case, because you have serious lung involvement, I wouldn't be

>surprised if you noticed the Herxheimer reaction right there in your lungs

>in the form of bronchitis (or worse.) Many people notice this in the

>beginning (it does go away) and in your case, I would go extremely slowly

>with the Minocin if you ever try it. Some only can tolerate 25 or 50mg

>once or twice a week. This in itself is a foreign idea to many rheumys,

>too as they are used to prescribing Minocin at 200mg or more every day .

>That is usually enough to start a huge Herx and stop the treatment before

>it ever gets started.

>

>I enjoyed the posts you just sent....I think the subject line you used was

> " for your reading pleasure " .... It sounded like the author was at least

>open to the possibility of viral or infectious causes. They even used the

>word " bias " in describing some doctor's methods of treatments verses

>others......as we know, there's a definite bias against the abx in some

>circles. Sigh......

>

>LOLOL.....give your ex a dose of myositis ??? :-)) Can I add a few more

>to your list? I laughed out loud at that one!

>

>You also asked how long a will be home from school....she's home until

>Aug. 20 and in the meantime is working two jobs - one as a swim instructor

>and the other as a word processor/document producer person for a large

>company. She's really had a hard time with the death of her dorm-mate.

>It's going to be difficult going back in August, I'm sure. She's supposed

>to go back a week early and help prepare for the incoming

>freshmen......it's such a sad situation all around. I sure hope they find

>out who killed that poor girl,......somehow, even a huge dose of myositis

>doesn't do justice in this case. Vicki, you can be sure that I wouldn't

>tell him about the antibiotic treatment in any case.

>

>

>Fern.......I'm thinking of you over there! Have you seen Dr. Garth

>Nicolson's research that links Fibromyalgia to the same mycoplasma that are

>implicated in RA and other rheumatic diseases? I think it's becoming more

>well-known. Didn't you try doxycyline.....or maybe for a bronchitis type

>of thing?

>

>Cari......I couldn't believe what 's teacher said! Can we wring her

>neck for you?! The way he goes about without complaining is so much more

>than admirable I can't even think of the right word at the moment. Maybe

>if he acted out how badly he truly feels sometimes, his teacher would get

>an appreciation for his situation. I still remember talking to our now 16

>year old 's fifth grade teacher prior to the start of school one

>year...... is deathly allergic to peanuts in any amount and all of her

>other teachers throughout the years appreciated us coming in and telling

>them about her situation.......except Mrs. Snitley (she matched her name

>LOL) She gave me the impression that she didn't appreciate my " over

>protective-ness " and that should be able to handle things by herself.

> Last week, in Spokane, WA a nine year old boy died from accidental

>peanuts.....in a cookie that the school had provided during an outing. I

>wonder if Mrs. Snitley is listening?

>

>Ann-Marie, do you have any peanut allergic kids in your school? It seems

>like there are a few (or more) in each one. I know you'll find a way to

>enjoy the summer :-) but please get that foot better first, OK?

>

>Mike.....please be careful in dropping the pred. Would it help to cut a

>little corner off of a pill to reduce the dose in a smaller increment? I

>know some people, instead of going down in incremental steps, will

>alternate days, like 4 one day and 4 1/2 the next, and then back to 4...etc

>for a while. Whatever you do, just be careful.

>

>OK, Annette, Sue, Jim, Ralph......and everyone else I so shamefully forgot

>to mention (your names will come to mind as soon as I hit the send button

>:-) We would love to hear from you! I'm so jealous that some of you get

>to go to the MAA conference!! Have a wonderful time!!! Do you think that

>someday they will recognize the antibiotic treatment? I sure hope so. The

>Scleroderma Foundation has discounted its effectiveness for years and won't

>acknowledge it, even though there are many supporters if you look in the

>right place and there was even a clinical trial that showed

>promise.......but, someone in the rheumatic group recently saw one of the

>foundation's main spokespersons at a rheumy's office and this rheumy

>predominantly uses the antibiotic treatment.....hmmmm?

>

>Anyways......take care,

>

>Connie

>

>

>

>

>

>

>

>

>

>

_________________________________________________________________

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Connie,

Mrs. Snitley! That's a good one. LOL You couldn't of made up a better

name for her.

does have a short attention span in group situations. Has a hard time

sitting still. Perhaps it is because of the prednisone or maybe that's just

and the fact that he is only 5! Ms. Amy actually told me that he is

above age level for his small motor skills, (writing, cutting, coloring

etc...) but he is only average for his large motor skills. He's a little

behind the other kids. I looked at her and sarcastically said, " You think? "

Again, I got the blank stare and confusion. I said, " We're blessed he

even walks " . A little dramatic perhaps but she said, " Oh, that's right " .

She got a report from me almost daily when I dropped him off. " He seems

overly tired today, he is too tired to stay for playground time, he's

complaining of pain in his right hip... etc...) I am not sure what the

conference was to prove or where her brain disappeared to. is a whiz

on the computer and we provide only educational games. I am sure he spends

more time then the average kid as he doesn't get to play outside alot,

especially in this heat. Jeff and I were laughing because I told Ms. Amy he

was reading at home. I just didn't tell her that that the words he can read

are: play, fast forward, rewind, pause, quit, install, delete, stop, Windows

95, courser, etc.... LOL Oh yeah....Mc's... first word all children

learn to read!

Hugs,

Cari

>

>Reply-To: OurMyositis

>To: <OurMyositis >

>Subject: Catching up :-)

>Date: Mon, 4 Jun 2001 09:50:34 -0700

>

>Hi Everyone :-)

>

>It looks as if lots of you've been busy posting these past few

>days......good! We had a bit of a busy weekend.....and now I'm trying to

>get caught up with the mails, so I'll try to get to each one in bits and

>pieces......

>

>.....I know you must all feel so badly for the fawn, but try to

>remember that there are so many things that could be connected to the

>story. Maybe the fawn was sick or injured, and hence, the reason he was in

>the standing water. Maybe another animal had already gotten to

>him?....there are so many possibilities. These sorts of things happen

>every day in the natural world and it's sometimes very difficult to

>understand. You guys did your best, and were very compassionate, too.

>That's all anyone or anything can ask of you.

>

>Also, I hope your joint aches and pains are lessening. Isn't it difficult

>to try to figure out just what is what?? I remember in the early days,

>trying to describe to my doc exactly just what was happening......it was

>really difficult to discern at times if I had joint or muscle pain. I know

>what you mean about those bony areas.....tank tops are not very flattering

>for me LOL

>

>

>.....I sure hope you can make this latest episode as painfree as

>possible. You mentioned that Freak said he would let you call the shots

>and give you whatever you want. Now's your chance! :-) make the guy work

>for you! There's no way he can't agree (grammar check here) that the

>antibiotics are less damaging than anything else he has to offer. Maybe he

>will prescribe it on a trial basis....some docs will, and no matter how

>reluctant they are doesn't really matter because you'll get better and show

>him that it works. If you can't make any headway with Freak, or even the

>new docs, you might have luck with your GP. They are, in many cases, much

>more open to the idea. You can have your rheumies still monitor you (and

>let them think that they are " doctoring " you :-) As with most treatments,

>the earlier the better.....don't let these guys cheat you out of something

>that works. (OK.....lecture is over. I just want to wring some of these

>doc's necks! Just know that I care, OK?)

>

>

>Vicki, bless your heart! Whatever you do, don't ever lose that fighting

>spirit of yours! If I can help you in any way, please let me

>know......and in the meantime, you and I will keep fishing out those

>articles, right? In all honesty, I can see why your doc would be

>reluctant to try anything with you.....I'm sure he's afraid of doing more

>harm than good. Also, many rheumatic sufferers who start the abx notice

>the die-off or Herxheimer reaction that I've mentioned previously. Those

>who buy into the mycoplasma theory (I do :-) feel that it is just a product

>of the mycoplasma dying off and creating a toxin as they die. Well, in

>your case, because you have serious lung involvement, I wouldn't be

>surprised if you noticed the Herxheimer reaction right there in your lungs

>in the form of bronchitis (or worse.) Many people notice this in the

>beginning (it does go away) and in your case, I would go extremely slowly

>with the Minocin if you ever try it. Some only can tolerate 25 or 50mg

>once or twice a week. This in itself is a foreign idea to many rheumys,

>too as they are used to prescribing Minocin at 200mg or more every day .

>That is usually enough to start a huge Herx and stop the treatment before

>it ever gets started.

>

>I enjoyed the posts you just sent....I think the subject line you used was

> " for your reading pleasure " .... It sounded like the author was at least

>open to the possibility of viral or infectious causes. They even used the

>word " bias " in describing some doctor's methods of treatments verses

>others......as we know, there's a definite bias against the abx in some

>circles. Sigh......

>

>LOLOL.....give your ex a dose of myositis ??? :-)) Can I add a few more

>to your list? I laughed out loud at that one!

>

>You also asked how long a will be home from school....she's home until

>Aug. 20 and in the meantime is working two jobs - one as a swim instructor

>and the other as a word processor/document producer person for a large

>company. She's really had a hard time with the death of her dorm-mate.

>It's going to be difficult going back in August, I'm sure. She's supposed

>to go back a week early and help prepare for the incoming

>freshmen......it's such a sad situation all around. I sure hope they find

>out who killed that poor girl,......somehow, even a huge dose of myositis

>doesn't do justice in this case. Vicki, you can be sure that I wouldn't

>tell him about the antibiotic treatment in any case.

>

>

>Fern.......I'm thinking of you over there! Have you seen Dr. Garth

>Nicolson's research that links Fibromyalgia to the same mycoplasma that are

>implicated in RA and other rheumatic diseases? I think it's becoming more

>well-known. Didn't you try doxycyline.....or maybe for a bronchitis type

>of thing?

>

>Cari......I couldn't believe what 's teacher said! Can we wring her

>neck for you?! The way he goes about without complaining is so much more

>than admirable I can't even think of the right word at the moment. Maybe

>if he acted out how badly he truly feels sometimes, his teacher would get

>an appreciation for his situation. I still remember talking to our now 16

>year old 's fifth grade teacher prior to the start of school one

>year...... is deathly allergic to peanuts in any amount and all of her

>other teachers throughout the years appreciated us coming in and telling

>them about her situation.......except Mrs. Snitley (she matched her name

>LOL) She gave me the impression that she didn't appreciate my " over

>protective-ness " and that should be able to handle things by herself.

> Last week, in Spokane, WA a nine year old boy died from accidental

>peanuts.....in a cookie that the school had provided during an outing. I

>wonder if Mrs. Snitley is listening?

>

>Ann-Marie, do you have any peanut allergic kids in your school? It seems

>like there are a few (or more) in each one. I know you'll find a way to

>enjoy the summer :-) but please get that foot better first, OK?

>

>Mike.....please be careful in dropping the pred. Would it help to cut a

>little corner off of a pill to reduce the dose in a smaller increment? I

>know some people, instead of going down in incremental steps, will

>alternate days, like 4 one day and 4 1/2 the next, and then back to 4...etc

>for a while. Whatever you do, just be careful.

>

>OK, Annette, Sue, Jim, Ralph......and everyone else I so shamefully forgot

>to mention (your names will come to mind as soon as I hit the send button

>:-) We would love to hear from you! I'm so jealous that some of you get

>to go to the MAA conference!! Have a wonderful time!!! Do you think that

>someday they will recognize the antibiotic treatment? I sure hope so. The

>Scleroderma Foundation has discounted its effectiveness for years and won't

>acknowledge it, even though there are many supporters if you look in the

>right place and there was even a clinical trial that showed

>promise.......but, someone in the rheumatic group recently saw one of the

>foundation's main spokespersons at a rheumy's office and this rheumy

>predominantly uses the antibiotic treatment.....hmmmm?

>

>Anyways......take care,

>

>Connie

>

>

>

>

>

>

>

>

>

>

_________________________________________________________________

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.....yeah, Mrs. Snitley......such fond memories....she certainly did match her name LOL

Cari, I wouldn't worry about 's attention span......it doesn't sound like you are, either and that's good. He'll take care of such details in his own time. Gee......and he's "only average" for his large motor skills??? Such a pity.......I wish I could have been there to see you give her the "you think?" look, LOL. Ya know, in our book that must mean he's waaaaayy above the rest of the class!

Anyway, in spite of everything, I hope you all have a great summer! Keep working on his 'reading!' :-)

Take care,

Connie

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Cari... You've most likely done this, but have you given 's teachers

any printed explanations about his disease, such as pamphlets about

symptoms, etc.? That's what I had to do with my family because they just

couldn't keep up with all the symptoms and had a hard time believing that

one disease could cause so many symptoms. Annette

Catching up :-)

>Date: Mon, 4 Jun 2001 09:50:34 -0700

>

>Hi Everyone :-)

>

>It looks as if lots of you've been busy posting these past few

>days......good! We had a bit of a busy weekend.....and now I'm trying to

>get caught up with the mails, so I'll try to get to each one in bits and

>pieces......

>

>.....I know you must all feel so badly for the fawn, but try to

>remember that there are so many things that could be connected to the

>story. Maybe the fawn was sick or injured, and hence, the reason he was in

>the standing water. Maybe another animal had already gotten to

>him?....there are so many possibilities. These sorts of things happen

>every day in the natural world and it's sometimes very difficult to

>understand. You guys did your best, and were very compassionate, too.

>That's all anyone or anything can ask of you.

>

>Also, I hope your joint aches and pains are lessening. Isn't it difficult

>to try to figure out just what is what?? I remember in the early days,

>trying to describe to my doc exactly just what was happening......it was

>really difficult to discern at times if I had joint or muscle pain. I know

>what you mean about those bony areas.....tank tops are not very flattering

>for me LOL

>

>

>.....I sure hope you can make this latest episode as painfree as

>possible. You mentioned that Freak said he would let you call the shots

>and give you whatever you want. Now's your chance! :-) make the guy work

>for you! There's no way he can't agree (grammar check here) that the

>antibiotics are less damaging than anything else he has to offer. Maybe he

>will prescribe it on a trial basis....some docs will, and no matter how

>reluctant they are doesn't really matter because you'll get better and show

>him that it works. If you can't make any headway with Freak, or even the

>new docs, you might have luck with your GP. They are, in many cases, much

>more open to the idea. You can have your rheumies still monitor you (and

>let them think that they are " doctoring " you :-) As with most treatments,

>the earlier the better.....don't let these guys cheat you out of something

>that works. (OK.....lecture is over. I just want to wring some of these

>doc's necks! Just know that I care, OK?)

>

>

>Vicki, bless your heart! Whatever you do, don't ever lose that fighting

>spirit of yours! If I can help you in any way, please let me

>know......and in the meantime, you and I will keep fishing out those

>articles, right? In all honesty, I can see why your doc would be

>reluctant to try anything with you.....I'm sure he's afraid of doing more

>harm than good. Also, many rheumatic sufferers who start the abx notice

>the die-off or Herxheimer reaction that I've mentioned previously. Those

>who buy into the mycoplasma theory (I do :-) feel that it is just a product

>of the mycoplasma dying off and creating a toxin as they die. Well, in

>your case, because you have serious lung involvement, I wouldn't be

>surprised if you noticed the Herxheimer reaction right there in your lungs

>in the form of bronchitis (or worse.) Many people notice this in the

>beginning (it does go away) and in your case, I would go extremely slowly

>with the Minocin if you ever try it. Some only can tolerate 25 or 50mg

>once or twice a week. This in itself is a foreign idea to many rheumys,

>too as they are used to prescribing Minocin at 200mg or more every day .

>That is usually enough to start a huge Herx and stop the treatment before

>it ever gets started.

>

>I enjoyed the posts you just sent....I think the subject line you used was

> " for your reading pleasure " .... It sounded like the author was at least

>open to the possibility of viral or infectious causes. They even used the

>word " bias " in describing some doctor's methods of treatments verses

>others......as we know, there's a definite bias against the abx in some

>circles. Sigh......

>

>LOLOL.....give your ex a dose of myositis ??? :-)) Can I add a few more

>to your list? I laughed out loud at that one!

>

>You also asked how long a will be home from school....she's home until

>Aug. 20 and in the meantime is working two jobs - one as a swim instructor

>and the other as a word processor/document producer person for a large

>company. She's really had a hard time with the death of her dorm-mate.

>It's going to be difficult going back in August, I'm sure. She's supposed

>to go back a week early and help prepare for the incoming

>freshmen......it's such a sad situation all around. I sure hope they find

>out who killed that poor girl,......somehow, even a huge dose of myositis

>doesn't do justice in this case. Vicki, you can be sure that I wouldn't

>tell him about the antibiotic treatment in any case.

>

>

>Fern.......I'm thinking of you over there! Have you seen Dr. Garth

>Nicolson's research that links Fibromyalgia to the same mycoplasma that are

>implicated in RA and other rheumatic diseases? I think it's becoming more

>well-known. Didn't you try doxycyline.....or maybe for a bronchitis type

>of thing?

>

>Cari......I couldn't believe what 's teacher said! Can we wring her

>neck for you?! The way he goes about without complaining is so much more

>than admirable I can't even think of the right word at the moment. Maybe

>if he acted out how badly he truly feels sometimes, his teacher would get

>an appreciation for his situation. I still remember talking to our now 16

>year old 's fifth grade teacher prior to the start of school one

>year...... is deathly allergic to peanuts in any amount and all of her

>other teachers throughout the years appreciated us coming in and telling

>them about her situation.......except Mrs. Snitley (she matched her name

>LOL) She gave me the impression that she didn't appreciate my " over

>protective-ness " and that should be able to handle things by herself.

> Last week, in Spokane, WA a nine year old boy died from accidental

>peanuts.....in a cookie that the school had provided during an outing. I

>wonder if Mrs. Snitley is listening?

>

>Ann-Marie, do you have any peanut allergic kids in your school? It seems

>like there are a few (or more) in each one. I know you'll find a way to

>enjoy the summer :-) but please get that foot better first, OK?

>

>Mike.....please be careful in dropping the pred. Would it help to cut a

>little corner off of a pill to reduce the dose in a smaller increment? I

>know some people, instead of going down in incremental steps, will

>alternate days, like 4 one day and 4 1/2 the next, and then back to 4...etc

>for a while. Whatever you do, just be careful.

>

>OK, Annette, Sue, Jim, Ralph......and everyone else I so shamefully forgot

>to mention (your names will come to mind as soon as I hit the send button

>:-) We would love to hear from you! I'm so jealous that some of you get

>to go to the MAA conference!! Have a wonderful time!!! Do you think that

>someday they will recognize the antibiotic treatment? I sure hope so. The

>Scleroderma Foundation has discounted its effectiveness for years and won't

>acknowledge it, even though there are many supporters if you look in the

>right place and there was even a clinical trial that showed

>promise.......but, someone in the rheumatic group recently saw one of the

>foundation's main spokespersons at a rheumy's office and this rheumy

>predominantly uses the antibiotic treatment.....hmmmm?

>

>Anyways......take care,

>

>Connie

>

>

>

>

>

>

>

>

>

>

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Connie,

I also think that perhaps 's short attention span, as Ms. Amy calls it,

may also have been due to the fact that Ms. Amy spent the entire year

teaching Pre-K kids the Continents of the World. I felt that perhaps

learning their phone numbers, addresses, shapes, letters and how to write

their names would of been a more practical use of time. Ann-Marie can voice

her opinion on this but I do not feel that 4 - 5 year olds are ready for the

" World " . Five year olds do not have the cognitive ability to take a flat

map of the world and the Seven Continents and apply that to the Globe, or

have an understanding of that kind of distance. has just begun to

truly understand how far Atlanta is from us, as that is where his cousin

Matt lives. I have a " book " that Ms. Amy gave me that put together on

Germany. I will keep it forever as it is hysterical. He drew the pictures

and Ms. Amy wrote down 's words about the pictures. He did draw a

castle which I thought was pretty good but the other pictures are Batman and

Superman " They help people build towns and fight bad guys " , a bird " People

ride on his back and then the bird flies to Germany " , and a spaceship " It's

a spaceship flying over to Germany " . LOL Ms. Amy took the book seriously.

I think 's book on Asia, Africa... etc... would of looked much the

same. Obviously, the concept of Germany, a different country with a

different culture, escaped his 5 year old brain. All year we just kind of

laughed and shook our heads and then I got her unrealistic evaluation. Then

I got mad. Now I have let it go.

woke this morning with a new rash on the back of his legs. This one

we haven't seen before. I think it is from laying down on the grass at

T-ball practice last night. His pediatrician said that he will have earned

his Dermatology license with all of 's new and interesting rashes.

Very itchy, tiny pockets of pus. Can't be a bite, too many pockets and he

was only on the grass a few seconds. Any guesses anyone?

Hugs, Cari

>

>Reply-To: OurMyositis

>To: <OurMyositis >

>Subject: Re: Catching up :-)

>Date: Mon, 4 Jun 2001 14:38:36 -0700

>

>....yeah, Mrs. Snitley......such fond memories....she certainly did match

>her name LOL

>

>Cari, I wouldn't worry about 's attention span......it doesn't sound

>like you are, either and that's good. He'll take care of such details in

>his own time. Gee......and he's " only average " for his large motor

>skills??? Such a pity.......I wish I could have been there to see you give

>her the " you think? " look, LOL. Ya know, in our book that must mean he's

>waaaaayy above the rest of the class!

>

>Anyway, in spite of everything, I hope you all have a great summer! Keep

> working on his 'reading!' :-)

>

>Take care,

>

>Connie

>

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Annette,

That is what I did. When developed the Avascular Necrosis I gave his

teacher and Preschool Directors copies of that too. They were in 's

file I got at the end of the year. She said she read them. I also give

them to the Shelby and Karsyn's teachers so they understand what is going on

at home. They have always been very appreciative. So much easier to let

them read it and have something to refer back to then trying to explain this

crazy disease. Expecially, since looks like a healthy, average boy.

Thanks for the advice. Always appreciated!

Hugs, Cari

>

>Reply-To: OurMyositis

>To: <OurMyositis >

>Subject: RE: Catching up :-)

>Date: Mon, 4 Jun 2001 19:41:11 -0400

>

>Cari... You've most likely done this, but have you given 's teachers

>any printed explanations about his disease, such as pamphlets about

>symptoms, etc.? That's what I had to do with my family because they just

>couldn't keep up with all the symptoms and had a hard time believing that

>one disease could cause so many symptoms. Annette

>

> Catching up :-)

> >Date: Mon, 4 Jun 2001 09:50:34 -0700

> >

> >Hi Everyone :-)

> >

> >It looks as if lots of you've been busy posting these past few

> >days......good! We had a bit of a busy weekend.....and now I'm trying to

> >get caught up with the mails, so I'll try to get to each one in bits and

> >pieces......

> >

> >.....I know you must all feel so badly for the fawn, but try to

> >remember that there are so many things that could be connected to the

> >story. Maybe the fawn was sick or injured, and hence, the reason he was

>in

> >the standing water. Maybe another animal had already gotten to

> >him?....there are so many possibilities. These sorts of things happen

> >every day in the natural world and it's sometimes very difficult to

> >understand. You guys did your best, and were very compassionate, too.

> >That's all anyone or anything can ask of you.

> >

> >Also, I hope your joint aches and pains are lessening. Isn't it

>difficult

> >to try to figure out just what is what?? I remember in the early days,

> >trying to describe to my doc exactly just what was happening......it was

> >really difficult to discern at times if I had joint or muscle pain. I

>know

> >what you mean about those bony areas.....tank tops are not very

>flattering

> >for me LOL

> >

> >

> >.....I sure hope you can make this latest episode as painfree as

> >possible. You mentioned that Freak said he would let you call the shots

> >and give you whatever you want. Now's your chance! :-) make the guy

>work

> >for you! There's no way he can't agree (grammar check here) that the

> >antibiotics are less damaging than anything else he has to offer. Maybe

>he

> >will prescribe it on a trial basis....some docs will, and no matter how

> >reluctant they are doesn't really matter because you'll get better and

>show

> >him that it works. If you can't make any headway with Freak, or even the

> >new docs, you might have luck with your GP. They are, in many cases,

>much

> >more open to the idea. You can have your rheumies still monitor you (and

> >let them think that they are " doctoring " you :-) As with most

>treatments,

> >the earlier the better.....don't let these guys cheat you out of

>something

> >that works. (OK.....lecture is over. I just want to wring some of these

> >doc's necks! Just know that I care, OK?)

> >

> >

> >Vicki, bless your heart! Whatever you do, don't ever lose that fighting

> >spirit of yours! If I can help you in any way, please let me

> >know......and in the meantime, you and I will keep fishing out those

> >articles, right? In all honesty, I can see why your doc would be

> >reluctant to try anything with you.....I'm sure he's afraid of doing more

> >harm than good. Also, many rheumatic sufferers who start the abx notice

> >the die-off or Herxheimer reaction that I've mentioned previously. Those

> >who buy into the mycoplasma theory (I do :-) feel that it is just a

>product

> >of the mycoplasma dying off and creating a toxin as they die. Well, in

> >your case, because you have serious lung involvement, I wouldn't be

> >surprised if you noticed the Herxheimer reaction right there in your

>lungs

> >in the form of bronchitis (or worse.) Many people notice this in the

> >beginning (it does go away) and in your case, I would go extremely slowly

> >with the Minocin if you ever try it. Some only can tolerate 25 or 50mg

> >once or twice a week. This in itself is a foreign idea to many rheumys,

> >too as they are used to prescribing Minocin at 200mg or more every day .

> >That is usually enough to start a huge Herx and stop the treatment before

> >it ever gets started.

> >

> >I enjoyed the posts you just sent....I think the subject line you used

>was

> > " for your reading pleasure " .... It sounded like the author was at least

> >open to the possibility of viral or infectious causes. They even used

>the

> >word " bias " in describing some doctor's methods of treatments verses

> >others......as we know, there's a definite bias against the abx in some

> >circles. Sigh......

> >

> >LOLOL.....give your ex a dose of myositis ??? :-)) Can I add a few more

> >to your list? I laughed out loud at that one!

> >

> >You also asked how long a will be home from school....she's home

>until

> >Aug. 20 and in the meantime is working two jobs - one as a swim

>instructor

> >and the other as a word processor/document producer person for a large

> >company. She's really had a hard time with the death of her dorm-mate.

> >It's going to be difficult going back in August, I'm sure. She's

>supposed

> >to go back a week early and help prepare for the incoming

> >freshmen......it's such a sad situation all around. I sure hope they

>find

> >out who killed that poor girl,......somehow, even a huge dose of myositis

> >doesn't do justice in this case. Vicki, you can be sure that I wouldn't

> >tell him about the antibiotic treatment in any case.

> >

> >

> >Fern.......I'm thinking of you over there! Have you seen Dr. Garth

> >Nicolson's research that links Fibromyalgia to the same mycoplasma that

>are

> >implicated in RA and other rheumatic diseases? I think it's becoming

>more

> >well-known. Didn't you try doxycyline.....or maybe for a bronchitis type

> >of thing?

> >

> >Cari......I couldn't believe what 's teacher said! Can we wring her

> >neck for you?! The way he goes about without complaining is so much

>more

> >than admirable I can't even think of the right word at the moment. Maybe

> >if he acted out how badly he truly feels sometimes, his teacher would get

> >an appreciation for his situation. I still remember talking to our now

>16

> >year old 's fifth grade teacher prior to the start of school one

> >year...... is deathly allergic to peanuts in any amount and all of

>her

> >other teachers throughout the years appreciated us coming in and telling

> >them about her situation.......except Mrs. Snitley (she matched her name

> >LOL) She gave me the impression that she didn't appreciate my " over

> >protective-ness " and that should be able to handle things by

>herself.

> > Last week, in Spokane, WA a nine year old boy died from accidental

> >peanuts.....in a cookie that the school had provided during an outing. I

> >wonder if Mrs. Snitley is listening?

> >

> >Ann-Marie, do you have any peanut allergic kids in your school? It seems

> >like there are a few (or more) in each one. I know you'll find a way to

> >enjoy the summer :-) but please get that foot better first, OK?

> >

> >Mike.....please be careful in dropping the pred. Would it help to cut a

> >little corner off of a pill to reduce the dose in a smaller increment? I

> >know some people, instead of going down in incremental steps, will

> >alternate days, like 4 one day and 4 1/2 the next, and then back to

>4...etc

> >for a while. Whatever you do, just be careful.

> >

> >OK, Annette, Sue, Jim, Ralph......and everyone else I so shamefully

>forgot

> >to mention (your names will come to mind as soon as I hit the send button

> >:-) We would love to hear from you! I'm so jealous that some of you get

> >to go to the MAA conference!! Have a wonderful time!!! Do you think

>that

> >someday they will recognize the antibiotic treatment? I sure hope so.

>The

> >Scleroderma Foundation has discounted its effectiveness for years and

>won't

> >acknowledge it, even though there are many supporters if you look in the

> >right place and there was even a clinical trial that showed

> >promise.......but, someone in the rheumatic group recently saw one of the

> >foundation's main spokespersons at a rheumy's office and this rheumy

> >predominantly uses the antibiotic treatment.....hmmmm?

> >

> >Anyways......take care,

> >

> >Connie

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

>

>_________________________________________________________________

>Get your FREE download of MSN Explorer at http://explorer.msn.com

>

>

>

>

>

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Hi Cari :-)

Perhaps it is Miss Amy's expectations of 4 and 5 year olds, rather than her choice of subject matter, that needs to be re-examined........I don't see a problem in exposing them to a variety of subjects at that age, but if she expects the kids to listen intently every minute......well......maybe she needs to find a different audience.

It doesn't surprise me that is into superheroes.....first, lots of kids his age like that stuff. When my son was that age, he loved He-Man toys. They were mean and tough looking action figures with weird names......I don't think they even make them anymore. Secondly,..... sees these guys who can 'jump over buildings' and do all kinds of impossible things that even non-JDM kids can't do and maybe that makes him feel more like one of the regular guys.....but that doesn't stop them from imaging and thinking "what if?"

Anyway.....just keep doing what you're doing, Cari. Think of how well you've done so far.....from the things you've mentioned about your girls and how handles his JDM, you have a lot of which to be proud.

As for the rash......who knows!? Your guess that it's from the grass sounds like a plausible answer to me. .....maybe try some Benadryl lotion?

Take care,

Connie

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Thanks for your kind words Connie. 's rash has gone as mysteriously as

it arrived. I used Benadryl on it and that stopped the itching.

I agree the problem with Ms. Amy's curriculum was that it just wasn't age

appropriate. She learned very early on in the year that 16 four and five

year olds, (There were two teachers in the room) weren't going to sit and

stay on task for very long and she rearranged her schedule accordingly. On

to Kindergarten and bigger and better things.

I remember He-Man! Now the boys are into Digimon and Power Rangers. Not

very attractive fellows either. likes Action Man also. Toys change

but boys don't!

Hugs,

Cari

>

>Reply-To: OurMyositis

>To: <OurMyositis >

>Subject: Re: Catching up :-)

>Date: Tue, 5 Jun 2001 10:57:29 -0700

>

>Hi Cari :-)

>

>Perhaps it is Miss Amy's expectations of 4 and 5 year olds, rather than her

>choice of subject matter, that needs to be re-examined........I don't see a

>problem in exposing them to a variety of subjects at that age, but if she

>expects the kids to listen intently every minute......well......maybe she

>needs to find a different audience.

>

>It doesn't surprise me that is into superheroes.....first, lots of

>kids his age like that stuff. When my son was that age, he loved

>He-Man toys. They were mean and tough looking action figures with weird

>names......I don't think they even make them anymore. Secondly,.....

>sees these guys who can 'jump over buildings' and do all kinds of

>impossible things that even non-JDM kids can't do and maybe that makes him

>feel more like one of the regular guys.....but that doesn't stop them from

>imaging and thinking " what if? "

>

>Anyway.....just keep doing what you're doing, Cari. Think of how well

>you've done so far.....from the things you've mentioned about your girls

>and how handles his JDM, you have a lot of which to be proud.

>

>As for the rash......who knows!? Your guess that it's from the grass

>sounds like a plausible answer to me. .....maybe try some Benadryl lotion?

>

>Take care,

>

>Connie

>

>

>

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Mike what kind of fingertip problems do you have? I have been having

problems with the skin on my hands and am wondering if it is the

dermatomyositis?

Gentle hugs,

Fern

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