Re: Another newbie with questions

[Guest guest]

I went cold turkey.

And yes, leaky gut gets healed after eliminating the wheat and with help from

Deflect.

Some people prefer to go slow by eliminating the big baddies like wheat,

dairy,corn etc.one by one.

You mighty want to try it for a few weeks and see how you feel.

I'm in my 4th year now and not looking back.

Emmi

[Guest guest]

,

I started two years ago and only ate the Highly Beneficial (HB) foods because I

wanted to lose weight and feel better. I lost nearly 30 lbs. and got so much

energy. I was lightheaded and that has gone away, I had shortness of breath and

that has gone away, I feel younger and everyone tells me how good I look. I

feel teriffic. I miss pasta on occasion and miss a sandwich once in a while. I

do eat rice or rice pasta at least once a week.

Once you start you will feel great and want to continue, I still hear things

from friends and family and a friend who is a doctor says that it is not a

healthy diet as there are no carbs. I listen to my body, as when I try to eat

bread I feel terrible for hours it feels like a rock in my stomach.

I find it easy to go to a restaurant and order meat and vegetables. I don't

miss the bread at the restaurants any more. I never order a sauce with my steak

as they always use corn starch or flour to thicken.

Remember it is your body, take care of it.

Regards,

another newbie with questions

Hello, folks. My name is and I'm about to take the Type O

plunge. I must admit, this is a bit intimidating to me and I'm

hoping you'll all have words of widsom and encouragment as well as

perhaps a few answers!

I'm 41, married with four children (yes, their blood testing kits

are on the way.) I'm a SAHM who homeschools and my DH works a

demanding job and travels on business. I have CFS, which is highly

inconvenient, as you may imagine! I'd love to be better, and after

reading this book as well as another related book, I suspect that I

have a yeast infection going on in the colon, perhaps even leaky

gut. Soooo. . .

Can you all answer a few questions for me?

For those of you with similar colon concerns, are you avoiding only

wheat or all glutens as well? (Ezekiel bread, spelt, all grains,

etc.)

Are you avoiding all sweeteners or only sugar, aspertame, etc. What

about stevia?

How did you get started? Drastic and cold turkey or phase out dairy

and slowly eliminate avoids from there?

Are you burned out on red meat and/or missing your pasta?

Most of all, I must admit this is drastic and somewhat scary changes

for me. I'd love to hear some success stories! I figure I have

nothing to loose, but am concerned that I won't be able to do this

long term.

Meanwhile, I'm waiting to hear from you all, reading up and making a

new grocery list for the Whole Foods store.

Yours in good faith,

[Guest guest]

In a message dated 4/10/2003 11:00:41 PM Eastern Daylight Time,

randlco@... writes:

<< My name is and I'm about to take the Type O

plunge. I must admit, this is a bit intimidating to me and I'm

hoping you'll all have words of widsom and encouragment as well as

perhaps a few answers! >>

It's the only food diet for an O. It'll make you feel wonderful. All of

your maladies will go away eventually. It's hard to stay on. It's not for

the feint-hearted.

[Guest guest]

I have been on the diet for a little over a month now and initially was going to

start out by just eliminating wheat, corn, and dairy, but went all the way

within a week. I have found it very easy, am not hungry, and have much more

energy. I was a big carb indulger and now eat spelt products (but not to the

degree that I did wheat). I have fish 3 times a week, chicken and turkey and

beef spread out over the week and have not become tired of any of it. The one

thing that is very different is having a salad every night before dinner, which

cuts back wanting to eat so much. Fresh pineapple is a wonderful dessert. I

take stomach ease.

[Guest guest]

, I went cold turkey in October. I cleaned out my cupboards and gave

stuff to the food bank. I had a yeast infection but no other specific

illness, I just didn't feel good. Now I am 65 pounds lighter and

feeling great.I exercise 30 mintes in the am and 30 minutes in the pm

most days. AS for pasta buy spelt and rice noodles!

[Guest guest]

-- my name is and I have had colitis all my life. I have

struggled with loose stools to constipation. Some times I would not

go to the bathroom for 1week or a week an half. I also had a spastic

colon as well and I would bleed. I started out gradually and have

lost 66lbs of weight but I have gained health like I have never known

could exist for me. My metabolism has changed, I cant go back to way

I was even if I wanted I would get sick. I know sometimes I slip and

try not on purpose but I get very ill if I do. As far as pasta I

love it I would have it nightly but I changed to rice pasta and I

feel great. I try very hard to avoid wheat since now I have developed

an allergy to it, the meat makes me feel better but sometimes I get

bored and thats because Iam still learning different ways to cook and

eeat it, I do eat fish as well. But back to the colon, Iam no longer

on meds for my spastic colon or on any other meds as well. I now

have a normal Bm daily which is great. Its worth it and as far as

long term goes you are just learning to eat differently nothing

really changes YOU JUST FEEL GREAT. Im also 44 and have 5 children.

- In , " knittinglisa " <randlco@s...> wrote:

> Hello, folks. My name is and I'm about to take the Type O

> plunge. I must admit, this is a bit intimidating to me and I'm

> hoping you'll all have words of widsom and encouragment as well as

> perhaps a few answers!

>

> I'm 41, married with four children (yes, their blood testing kits

> are on the way.) I'm a SAHM who homeschools and my DH works a

> demanding job and travels on business. I have CFS, which is highly

>

[Guest guest]

> Hello, folks. My name is and I'm about to take the Type O

> plunge. I must admit, this is a bit intimidating to me and I'm

> hoping you'll all have words of widsom and encouragment as well as

> perhaps a few answers!

>

> How did you get started? Drastic and cold turkey or phase out

dairy

> and slowly eliminate avoids from there?

I actually bought the original book for a friend of mine who keeps

ending up in the hospital with digestive issues. It had come

recommended by someone I know online who had had similar problems.

My friend, however, refused to even consider it because she's Type A,

and the vegetarian lifestyle was horrifying to her. (Why it was more

horrifying than extremely painful stomach problems and 4-5 hospital

visits a year, I'll never understand)

So anyway, I ended up with a $25 gift and no gift recipient. I had

tried Atkins years before and had *some* success, but his original

recommendations included a lot of dairy. I had learned in the in-

between years that I probably had a wheat and/or dairy intolerance,

and here I had a book in hand that explained why.

When I bought it, I lived in Seattle. I stopped in my local grocery

store one night about 3am (Woodinville across from the theatre - for

anyone who lives up there), and ran into the specialty food buyer. It

turned out her best friend was ALSO Type O and doing the BTD, so they

carried a TON of BTD-friendly foods. I also got a lot of things at

PCC.

I started off working on eliminating four things - wheat, dairy, corn

and pork, and I'll tell you - corn is an insidious little thing that

is in everyfrickingthing on the market - even MARSHMALLOWS and

VITAMINS. Rather than get totally anal about it, I cut out as much

as I can.

I've been a meat & potatoes girl all my life, so the concept of

eating FIVE fruits & vegetables a day was just totally out there. I

started off making sure I had ONE. When one became a habit, I worked

up to two and so forth.

Not to get too graphic, but initially I found that making the changes

gave me both gas and foul bathroom moments. I also started breaking

out & felt like I needed to brush my teeth a lot. My friend told me

that was normal as I was releasing a lot of toxins. It eventually

went away.

The hardest part is eating out - sure I can make mac & cheese at home

with rice pasta & mozzarella, but my friends don't serve it, and

neither do restaurants. Someone puts a plate in front of you with a

pork chop, mashed potatoes with milk-gravy, cauliflower covered in

cheese, corn, and an orange slice. There's not one BTD-friendly food

on that plate.

It's hard to explain that to people, so you *have* to prepare food in

advance. I actually keep food in my desk at work, and in the car,

just in case.

[Guest guest]

And why at your young age would you be better with a ceramic on

ceramic implant over a resurfacing or at least a large head metal on

metal? Before you go ahead with this you need to ask this surgeon

what your lifetime restrictions will be after surgery and how long

this implant will last before you need a revision. The answer to the

first question should be " no restrictions " and the answer to the

second should be " hopefully never " . If you get the wrong answers you

should run quickly to a surgeon who deals with younger and more

active people. Having a resurfacing means that should a revision

ever be needed all your femoral bone is still intact. Having a metal

on metal resurfacing device or a metal on metal THR means no

restrictions. At your age you do not want to be told you can never

bend your hip past 90 degrees(think about it)or never cross your

legs again. This was unacceptable to me so I had a resurfacing done

at age 48 earlier this year. Do not have this surgery until you know

your options and can make an informed decision.

Deb

>

> Dear folks,

>

> I¹ve been a member of this list for about 5 months and have gleaned

> priceless information. I¹m hoping someone might be able to give me

a little

> more specific help. BTW, my name is le, I¹m 41 and I live

in Paris,

> though I¹m Australian.

>

> Here¹s my tale:

>

> Almost 2 years ago, I had some pain in my left hip. Not a lot‹I

just noticed

> I couldn¹t cross my legs and it was painful to get up from low

chairs. It

> seemed to be getting better so I didn¹t worry too much about it.

Then,

> approx. 3 weeks later, I woke up from sleeping on my stomach with

my left

> leg bent and found my leg swollen from my groin to above my

knees‹as though

> the muscles were all pushed out. I also wasn¹t standing straight‹I

couldn¹t

> stand with my feet and knees together, I¹d have to bend my left

knee to do

> that. Went to the doctor, had x-rays done, and was assured there

was no

> arthritis present, it was some kind of muscle problem.

>

> Went to a PT, who told me I¹d been born with one leg longer than

the other,

> which I refuted, because I was sure that, considering I was 40, I

would have

> noticed way before that. She said it was my back and though she

did help

> with unlocking that, (which I think was locked up because I was

> compensating) nothing changed the pain in my leg‹although there

was hardly

> any pain in the hip (in fact, I could pound on my hip and still

can), my

> quad was really sore.

>

> Not getting any joy there, after about 10 months, I went to see an

> osteopath, who did an absolutely wonderful job of freeing up the

muscles and

> helping me move easier. Still, he couldn¹t figure out what was

causing the

> problem. Between him, my doctor and the PT, I was tired of people

asking me

> why I couldn¹t stand straight‹that¹s what I was paying THEM to

work out <g>

>

> Finally, someone else took a look at the x-rays (the 5th person to

do so, 16

> months into this) and said ³It¹s arthritis.² I was referred to an

ortho, who

> I knew wasn¹t the doctor for me because he was so rough. He also

said he

> wouldn¹t operate because I was too young, I needed to lose weight,

and I

> could still walk‹even though I could only walk about 10 minutes

before I had

> to stop. That wasn¹t helped my the fact that I love at the top of

Montmartre

> on cobblestoned streets, in a 5th-floor walk-up! I was pretty

frustrated

> because I couldn¹t lose weight if I couldn¹t move. I had new x-

rays that

> showed my left hip was 3 cms lower than my right‹no wonder I

couldn¹t stand

> with my legs straight. The second x-ray technician immediately

said ³you¹ll

> need a replacement.² Around that time, I was diagnosed with

Hashimoto¹s

> thyroiditis. Once I started medication for that, I started losing

weight and

> my head was a lot clearer. In a last ditch effort to try all I

could

> (considering it seemed that surgery wasn¹t an option at that

time), I went

> to a chiro, who I think helped in some ways and hurt in others.

Though he

> said things would get worse before they got better, they got to

the point

> where I gad to use walking sticks. Not because of my hip but the

pain in the

> quad/knee.

>

> The chiro wanted to keep going with treatment (he believes there¹s

some

> sacroiliac joint involvement) but I got an appointment with an

ortho at the

> Clinique Jouvenet, which has a very good rep around town. As soon

as I saw

> the doctor, I knew I was in good hands. He took one look at the x-

rays and

> said ³When do you want to have the operation?² We discussed a

resurfacing

> but he felt I¹d be better with a THR, ceramic-on-ceramic.

>

> That was 3 weeks ago and I¹ll be having the op. on Friday. Of

course, I¹m

> scared, but I have great friends to hold my hand. My concern is,

will

> replacing the joint fix the issue of that hip being lower? I¹d

hate to come

> out of it and see the muscles are still screwed up. Of course, it

might be

> that the joint needs to be replaced before we can really work on

getting the

> hip back into the right place, but I¹m interested to know if

anyone else has

> been in this situation. I¹m really scared that my legs won¹t come

back to

> the same length‹or close enough, at least, that I can get out of

the

> Birkenstocks I¹ve been living in. I¹ve got some great red pumps

languishing

> in the back of my closet.

>

> I¹m scheduled to stay 5-7 days in the clinic, then I¹ll got to a

> ³reeducation facility² for more PT. That¹s the beauty of France‹if

you can¹t

> look after yourself (I live on my own and those stairs are a

bitch), there¹s

> always a place to go. BTW, apart from the surgeon¹s 600E fee

(which will be

> reimbursed) and the 12E/day gap that my insurance won¹t cover for

a private

> room, everything else is being taken care of by my work insurance.

If I¹d

> opted to go public, everything would have been covered‹but I¹m not

sure what

> the wait time would have been, not to mention that my surgeon

(

> Sorriaux) is warm, caring, and gentle. Sometimes living in France

can be

> difficult, but not health care. (Apart from people who can¹t read

x-rays,

> that is!)

>

> One last thing: I met with the anesthesiologist, who said he

wanted to do a

> general, but after the discussions here, I¹m telling him I want an

epidural.

>

> Thanks in advance for any information you can give me.

>

> Cheers,

> le

> --

> gabrielle@...

> http://www.gabrielleluthy.com

> http://gabrielleluthy.typepad.com

>

[Guest guest]

Hi le,

I visited Paris a few years ago and just loved it. You live in a wonderful city!

My history was similar to yours . . . except that my HMO sent me to a good orthopedist who diagnosed "a little arthritis" and said to come back to see him in a year. By that time I'd had a similar experience as you where i couldn't stand straight for the pain. I'd been on my exercise bicycle (less pounding than walking or running) and then leaned over my bed to pull down the blankets and discovered I was in excruciating pain and couldn't straighten up. It was time for the surgery.

I am only on the second floor, but since there are steps from the street to the yard I face 30 stairs to get in/out of my apartment. Right now I am having more trouble/less trouble depending on the day, but I need to hold on and pull myself up the stairs.

My doctors kept saying my legs were both the same length . . . but I kept talking to people and discovered that from favoring my left side I had lifted it out of alignment and "shortened" the muscles in my left side. I went through life that way through the time I had the initial hip replacement and then 2 revisions. When I mentioned the problem to the Physical Therapist after my 3rd revision he wandered off for a consult and came back and gave me a rolled up towel that he told me to place between my waist and my bottom rib and lay on the right side (my hip replacement and revisions were all on the left side). After laying like that for about 10-15 minutes I discovered I already felt more even. You have to keep doing it though, as you may have to combat years of bad habits. It is incredibly easy and I could get my heat pack or ice pack at the same time. I would recommend you start doing this now and see if it helps. If it doesn't talk to your therapist and see how they handle this problem in France. And if they tell you something different could you write and tell me?

Good luck w/ your hip replacement. If you have the same success I had w/ mine you will have 10-15 years of freedom from pain before you need a revision. I was 33 when the initial surgery was done. The surgeon said I was right on target for the time span at that age as the younger you are the more active you are likely to be after a successful surgery. Like he told me, you'll get to feeling so well that you tend to get carried away and get really, really active . . . which can shorten the time the prosthesis and bone have a solid contact.

I'm 57 now and am facing the prospect of getting my right hip done. I am having pains I didn't have before my left hip replacement, so I wonder if my knee has gone or it's because the roughened bone surfaces irritate different nerves. It is very, very common to have what is called "referred pain" in your knee if you are having trouble w/ hip. In all cases my knee pain has gone away with the corrective surgery in the hip.

Please let us know how you are doing and don't hesitate to ask questions. There are lots of people who have had their surgery(ies) and have stuck around for the support the group gives for those waiting for their surgeries or recovering from their suregeries.

sing the problem. Between him, my doctor and the PT, I was tired of people asking me why I couldn’t stand straight—that’s what I was paying THEM to work out <g>

[Guest guest]

The reason my surgeon gave me for not using the ceramic on ceramic

for younger patients is the restrictions he would have to place on

them. He said the ball is smaller and therefore he would impose a 90

degree restriction for life and also no crossing the leg over the

other. Now, every surgeon is different so yours probably feels

otherwise. I found any restrictions whatsoever unacceptable and that

is why a large metal on metal was chosen. The size is anatomically

correct and no chance of dislocation. I was resurfaced but the

device is the same size as a metal on metal THR. As for leg length

discrepancy I was told that measurments would be taken before,

during,and after surgery to get it right. The op-leg feels a bit

longer right after surgery but once everything " settles " in you

should be even. If not, they didn't do a very good job measuring.

Deb

> >

> > Dear folks,

> >

> > I¹ve been a member of this list for about 5 months and have

gleaned

> > priceless information. I¹m hoping someone might be able to give

me

> a little

> > more specific help. BTW, my name is le, I¹m 41 and I live

> in Paris,

> > though I¹m Australian.

> >

> > Here¹s my tale:

> >

> > Almost 2 years ago, I had some pain in my left hip. Not a lot‹I

> just noticed

> > I couldn¹t cross my legs and it was painful to get up from low

> chairs. It

> > seemed to be getting better so I didn¹t worry too much about it.

> Then,

> > approx. 3 weeks later, I woke up from sleeping on my stomach

with

> my left

> > leg bent and found my leg swollen from my groin to above my

> knees‹as though

> > the muscles were all pushed out. I also wasn¹t standing

straight‹I

> couldn¹t

> > stand with my feet and knees together, I¹d have to bend my left

> knee to do

> > that. Went to the doctor, had x-rays done, and was assured there

> was no

> > arthritis present, it was some kind of muscle problem.

> >

> > Went to a PT, who told me I¹d been born with one leg longer than

> the other,

> > which I refuted, because I was sure that, considering I was 40,

I

> would have

> > noticed way before that. She said it was my back and though she

> did help

> > with unlocking that, (which I think was locked up because I was

> > compensating) nothing changed the pain in my leg‹although there

> was hardly

> > any pain in the hip (in fact, I could pound on my hip and still

> can), my

> > quad was really sore.

> >

> > Not getting any joy there, after about 10 months, I went to see

an

> > osteopath, who did an absolutely wonderful job of freeing up the

> muscles and

> > helping me move easier. Still, he couldn¹t figure out what was

> causing the

> > problem. Between him, my doctor and the PT, I was tired of

people

> asking me

> > why I couldn¹t stand straight‹that¹s what I was paying THEM to

> work out <g>

> >

> > Finally, someone else took a look at the x-rays (the 5th person

to

> do so, 16

> > months into this) and said ³It¹s arthritis.² I was referred to

an

> ortho, who

> > I knew wasn¹t the doctor for me because he was so rough. He also

> said he

> > wouldn¹t operate because I was too young, I needed to lose

weight,

> and I

> > could still walk‹even though I could only walk about 10 minutes

> before I had

> > to stop. That wasn¹t helped my the fact that I love at the top

of

> Montmartre

> > on cobblestoned streets, in a 5th-floor walk-up! I was pretty

> frustrated

> > because I couldn¹t lose weight if I couldn¹t move. I had new x-

> rays that

> > showed my left hip was 3 cms lower than my right‹no wonder I

> couldn¹t stand

> > with my legs straight. The second x-ray technician immediately

> said ³you¹ll

> > need a replacement.² Around that time, I was diagnosed with

> Hashimoto¹s

> > thyroiditis. Once I started medication for that, I started

losing

> weight and

> > my head was a lot clearer. In a last ditch effort to try all I

> could

> > (considering it seemed that surgery wasn¹t an option at that

> time), I went

> > to a chiro, who I think helped in some ways and hurt in others.

> Though he

> > said things would get worse before they got better, they got to

> the point

> > where I gad to use walking sticks. Not because of my hip but the

> pain in the

> > quad/knee.

> >

> > The chiro wanted to keep going with treatment (he believes

there¹s

> some

> > sacroiliac joint involvement) but I got an appointment with an

> ortho at the

> > Clinique Jouvenet, which has a very good rep around town. As

soon

> as I saw

> > the doctor, I knew I was in good hands. He took one look at the

x-

> rays and

> > said ³When do you want to have the operation?² We discussed a

> resurfacing

> > but he felt I¹d be better with a THR, ceramic-on-ceramic.

> >

> > That was 3 weeks ago and I¹ll be having the op. on Friday. Of

> course, I¹m

> > scared, but I have great friends to hold my hand. My concern is,

> will

> > replacing the joint fix the issue of that hip being lower? I¹d

> hate to come

> > out of it and see the muscles are still screwed up. Of course,

it

> might be

> > that the joint needs to be replaced before we can really work on

> getting the

> > hip back into the right place, but I¹m interested to know if

> anyone else has

> > been in this situation. I¹m really scared that my legs won¹t

come

> back to

> > the same length‹or close enough, at least, that I can get out of

> the

> > Birkenstocks I¹ve been living in. I¹ve got some great red pumps

> languishing

> > in the back of my closet.

> >

> > I¹m scheduled to stay 5-7 days in the clinic, then I¹ll got to a

> > ³reeducation facility² for more PT. That¹s the beauty of

France‹if

> you can¹t

> > look after yourself (I live on my own and those stairs are a

> bitch), there¹s

> > always a place to go. BTW, apart from the surgeon¹s 600E fee

> (which will be

> > reimbursed) and the 12E/day gap that my insurance won¹t cover

for

> a private

> > room, everything else is being taken care of by my work

insurance.

> If I¹d

> > opted to go public, everything would have been covered‹but I¹m

not

> sure what

> > the wait time would have been, not to mention that my surgeon

> (

> > Sorriaux) is warm, caring, and gentle. Sometimes living in

France

> can be

> > difficult, but not health care. (Apart from people who can¹t

read

> x-rays,

> > that is!)

> >

> > One last thing: I met with the anesthesiologist, who said he

> wanted to do a

> > general, but after the discussions here, I¹m telling him I want

an

> epidural.

> >

> > Thanks in advance for any information you can give me.

> >

> > Cheers,

> > le

> > --

> > gabrielle@

> > http://www.gabrielleluthy.com

> > http://gabrielleluthy.typepad.com

> >

>

[Guest guest]

Hi a!

Welcome to the group! I too have myositis- there has been a lot of

disagreement from doctors on whether it is polymyositis or dermatomyostis.

My CK was 17,000 at its highest, and is now below 4,000 thanks to AP alone.

I wanted to tell you that my one dose of IVIG was disasterous. I got 60

grams in 3 hours the first day, and the same the second day. I had a

horrible reaction- aseptic meningitis- and was hospitalized for a week. It

was terrible. Make sure you are very very well hydrated, take Benadryl or

steroids beforehand, and have them give it to you slowly, over many hours if

needed.

There is another woman in this group who used erythromycin for DM with good

success. Her success story is in the medical histories on the rheumatic

site. There is also a woman on Dr. Mercola's site who used diet and

antibiotics to cure her disease. If you search dermatomyositis on that site,

you will find her story. I have found diet to be so important in all of

this. So glad you have a pro-AP rheumy- you must be in good hands! Let us

know how you do with all these treatments! Best of luck!

Emma

On Sat, Dec 27, 2008 at 2:00 PM, a <paulakip@...> wrote:

> Hi everybody! I'm a, age 44, diagnosed with dermatomyositis in

> Aug. 2008. I have been taking prednisone and Humira since then. As I

> tapered prednisone my symptoms returned and muscle enzymes became

> elevated so rheumy determined that Humira is not working. Next week I

> begin IVIG treatments.

>

> I have also begun AP. Because I am breastfeeding, I am taking

> erythromycin (tetracyclines will permanently discolor baby's teeth)

> 250mg twice daily.

>

> My rheumy ran the mycloplasma pneumoniae, which was negative, although

> several of my kids had mycoplasma pneumoniae in Jan. 208 so I thought

> it might be a likely possibility. He also ran the anti-streptolysin O

> test which came back high and the streptozyme screen which also came

> back positive. The rheumy said that the positive strep tests could be

> a false positive and an indicator of general inflammation, but that he

> still thinks they are a good reason to do AP. I don't really

> understand how a positive strep test could be false?

>

> My rheumy is very good. He is pro AP and often uses it as his first

> treatment for " less serious " illnesses like RA, but he feels that for

> DM patients, the risk of getting very weak while waiting to see if the

> treatment is going to work is too great.

>

> So what do you all think of the erythromycin daily? Has anyone had

> success with that? I was having a flare when I began it a week ago,

> and truthfully I already doing much better. Could I be seeing a

> benefit this quickly? I am also taking prednisone, 30mg daily at the

> moment, but I was doing that before starting the erythromycin and I am

> feeling much better now than when on just the prednisone.

>

> Aside from doing the tests for the other types of mycoplasma, is there

> anything else i need to do?

>

> Thanks,

> a

>

>

>

[Guest guest]

Hi a,

I cannot offer any advice but I wish you all the best. My question to you is,

where are you located as your rheumy seems like a gem....anywhere near Cleveland

Ohio?

Sue

---- a <paulakip@...> wrote:

> Hi everybody! I'm a, age 44, diagnosed with dermatomyositis in

> Aug. 2008. I have been taking prednisone and Humira since then. As I

> tapered prednisone my symptoms returned and muscle enzymes became

> elevated so rheumy determined that Humira is not working. Next week I

> begin IVIG treatments.

>

> I have also begun AP. Because I am breastfeeding, I am taking

> erythromycin (tetracyclines will permanently discolor baby's teeth)

> 250mg twice daily.

>

> My rheumy ran the mycloplasma pneumoniae, which was negative, although

> several of my kids had mycoplasma pneumoniae in Jan. 208 so I thought

> it might be a likely possibility. He also ran the anti-streptolysin O

> test which came back high and the streptozyme screen which also came

> back positive. The rheumy said that the positive strep tests could be

> a false positive and an indicator of general inflammation, but that he

> still thinks they are a good reason to do AP. I don't really

> understand how a positive strep test could be false?

>

> My rheumy is very good. He is pro AP and often uses it as his first

> treatment for " less serious " illnesses like RA, but he feels that for

> DM patients, the risk of getting very weak while waiting to see if the

> treatment is going to work is too great.

>

> So what do you all think of the erythromycin daily? Has anyone had

> success with that? I was having a flare when I began it a week ago,

> and truthfully I already doing much better. Could I be seeing a

> benefit this quickly? I am also taking prednisone, 30mg daily at the

> moment, but I was doing that before starting the erythromycin and I am

> feeling much better now than when on just the prednisone.

>

> Aside from doing the tests for the other types of mycoplasma, is there

> anything else i need to do?

>

> Thanks,

> a

>

>

>

[Guest guest]

Hi a, Welcome---you are fortunate to have a doctor so knowledgable and

agreeable to A/P.  There is one thing that bothers me is the fact that you are

still on Prednisone.  The purpose of antibiotics is to weaken the Cell wall

deficiant microbes so that the immune can

system can kill them off.  Prednisone shuts down the immune system, therefore

not allowing that system to do it's work.  Ask the doctor about weaning from

yourself from the Prednisone.  You can't do both, boost the immune system and

shut it down.  It is one way or the other.  Good luck to you and keep us

informed.  Congratualtions on the new baby and for the astute doctor who tested

your children.  You may just be able to prevent them from a lifetime of misery. 

The best to you,  Dolores & Mike  

> Hi everybody! I'm a, age 44, diagnosed with dermatomyositis in

> Aug. 2008. I have been taking prednisone and Humira since then. As I

> tapered prednisone my symptoms returned and muscle enzymes became

> elevated so rheumy determined that Humira is not working. Next week I

> begin IVIG treatments.

>

> I have also begun AP. Because I am breastfeeding, I am taking

> erythromycin (tetracyclines will permanently discolor baby's teeth)

> 250mg twice daily.

>

> My rheumy ran the mycloplasma pneumoniae, which was negative, although

> several of my kids had mycoplasma pneumoniae in Jan. 208 so I thought

> it might be a likely possibility. He also ran the anti-streptolysin O

> test which came back high and the streptozyme screen which also came

> back positive. The rheumy said that the positive strep tests could be

> a false positive and an indicator of general inflammation, but that he

> still thinks they are a good reason to do AP. I don't really

> understand how a positive strep test could be false?

>

> My rheumy is very good. He is pro AP and often uses it as his first

> treatment for " less serious " illnesses like RA, but he feels that for

> DM patients, the risk of getting very weak while waiting to see if the

> treatment is going to work is too great.

>

> So what do you all think of the erythromycin daily? Has anyone had

> success with that? I was having a flare when I began it a week ago,

> and truthfully I already doing much better. Could I be seeing a

> benefit this quickly? I am also taking prednisone, 30mg daily at the

> moment, but I was doing that before starting the erythromycin and I am

> feeling much better now than when on just the prednisone.

>

> Aside from doing the tests for the other types of mycoplasma, is there

> anything else i need to do?

>

> Thanks,

> a

>

>

>

[Guest guest]

Dear Mike,

I will be tapering the prednisone very soon. I go down to 20mg later

this week after my first IVIG treatment, and then down 1mg per week

after that. My rheumy believes in tapering very slowly.

a

> > Hi everybody! I'm a, age 44, diagnosed with dermatomyositis in

> > Aug. 2008. I have been taking prednisone and Humira since then. As I

> > tapered prednisone my symptoms returned and muscle enzymes became

> > elevated so rheumy determined that Humira is not working. Next week I

> > begin IVIG treatments.

> >

> > I have also begun AP. Because I am breastfeeding, I am taking

> > erythromycin (tetracyclines will permanently discolor baby's teeth)

> > 250mg twice daily.

> >

> > My rheumy ran the mycloplasma pneumoniae, which was negative, although

> > several of my kids had mycoplasma pneumoniae in Jan. 208 so I thought

> > it might be a likely possibility. He also ran the anti-streptolysin O

> > test which came back high and the streptozyme screen which also came

> > back positive. The rheumy said that the positive strep tests could be

> > a false positive and an indicator of general inflammation, but that he

> > still thinks they are a good reason to do AP. I don't really

> > understand how a positive strep test could be false?

> >

> > My rheumy is very good. He is pro AP and often uses it as his first

> > treatment for " less serious " illnesses like RA, but he feels that for

> > DM patients, the risk of getting very weak while waiting to see if the

> > treatment is going to work is too great.

> >

> > So what do you all think of the erythromycin daily? Has anyone had

> > success with that? I was having a flare when I began it a week ago,

> > and truthfully I already doing much better. Could I be seeing a

> > benefit this quickly? I am also taking prednisone, 30mg daily at the

> > moment, but I was doing that before starting the erythromycin and I am

> > feeling much better now than when on just the prednisone.

> >

> > Aside from doing the tests for the other types of mycoplasma, is there

> > anything else i need to do?

> >

> > Thanks,

> > a

> >

> >

> >

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

[Guest guest]

Dear Emma,

What an awful reaction! I will be receiving 40 grams in 5 hours, so

much more slowly. I will only get it once a week for the first month,

then hopefully down to once every 2 weeks. My CK was never anywhere

near as high as yours.

Thanks for the tip about being hydrated. Does IVIG dehydrate you? I

am already taking steroids and antihistamines so that should not be a

problem.

I have read both of those case studies. Just wondered if there was

anyone else?

THanks again,

a

>

> > Hi everybody! I'm a, age 44, diagnosed with dermatomyositis in

> > Aug. 2008. I have been taking prednisone and Humira since then. As I

> > tapered prednisone my symptoms returned and muscle enzymes became

> > elevated so rheumy determined that Humira is not working. Next week I

> > begin IVIG treatments.

> >

> > I have also begun AP. Because I am breastfeeding, I am taking

> > erythromycin (tetracyclines will permanently discolor baby's teeth)

> > 250mg twice daily.

> >

> > My rheumy ran the mycloplasma pneumoniae, which was negative, although

> > several of my kids had mycoplasma pneumoniae in Jan. 208 so I thought

> > it might be a likely possibility. He also ran the anti-streptolysin O

> > test which came back high and the streptozyme screen which also came

> > back positive. The rheumy said that the positive strep tests could be

> > a false positive and an indicator of general inflammation, but that he

> > still thinks they are a good reason to do AP. I don't really

> > understand how a positive strep test could be false?

> >

> > My rheumy is very good. He is pro AP and often uses it as his first

> > treatment for " less serious " illnesses like RA, but he feels that for

> > DM patients, the risk of getting very weak while waiting to see if the

> > treatment is going to work is too great.

> >

> > So what do you all think of the erythromycin daily? Has anyone had

> > success with that? I was having a flare when I began it a week ago,

> > and truthfully I already doing much better. Could I be seeing a

> > benefit this quickly? I am also taking prednisone, 30mg daily at the

> > moment, but I was doing that before starting the erythromycin and I am

> > feeling much better now than when on just the prednisone.

> >

> > Aside from doing the tests for the other types of mycoplasma, is there

> > anything else i need to do?

> >

> > Thanks,

> > a

> >

> >

> >

>

>

>

[Guest guest]

Thanks for sharing your experience with IVIG. I'm starting to feel a

little nervous! I know my rheumy has many patients receiving IVIG

each week, though, and he said problems are rare. It is given at the

oncology center of the local hospital. I'm hoping it goes well for me!

a

>

> I receive IVIG treatments every four weeks. I get 45 grams over 12

hours. If

> I get it any faster I get sick with a severe headache and upset

stomach. My

> advice is to go slower with it. You feel better after the treatment

too if it is

> given very slowly.

>

> I also found that the low concentrations worked better. It is very

thick

> stuff and 10% was too much for my veins to handle. I get benedryl at

the beginning

> and again half way through. I get a shot of lasix at the end.

> The benedryl makes me so sleepy that I go to bed and sleep through

most of

> it. The nurse comes to my home to administer it and stays the entire

time. She

> checks my blood pressure and other vitals signs on a regular basis.

>

> For some reason I have always found that my hand veins work the best

for the

> iv. You would think that the bigger veins would be better but that

has not

> been true in my case.

>

> If I can be of any other help, feel free to ask. I have been getting

IVIG for

> many years now and have it down to a science that works for me. 40

grams in

> five hours would be brutal for me, but I guess everyone is different.

>

> By the way, the IVIG has worked wonderfully for me.

>

>

>

[Guest guest]

The IVIG went perfectly--no reaction of any kind. All I took was

TYlenol 30 minutes prior.

THanks for your advice!

a

>

> I was really scared the first time. I received a much higher loading

dose and

> was given IVs for three straight days in the hospital. My doctor

always does

> the first ones in the hospital in case of reactions. Then if there

are no

> problems he gives them in the home.

>

> I am sensitive to almost all medicines. I react to NSAIDS,

prednisone, a lot

> of antibiotics, etc. But the IVIG has worked great. Like I said

before I only

> react if it is given too fast, and then it is a bad headache and upset

> stomach.

>

> See if you can get the rate slowed down a little. I always take the

benedryl

> (in shot form) and some aspirin.

> Also, drink a lot the day before so you are well hydrated. If your

blood

> pressure is affected after the treatment try some lasix. I was okay

right after

> the treatment but then would get a headache and high blood pressure

a few days

> later. Now I get the treatments on Tues. for 12 hours and then a

lasix shot

> right then.

> Wednesday I have blood drawn to check for any kidney or liver etc.

problems.

> Then Thursday night my nurse comes back and gives me another shot of

lasix.

> That prevents any after effects.

>

> If you have any other questions, feel free to ask. I realize we are all

> different, but IVIG has been a lifesaver for me. I have been getting

it for years.

> It is not a cure. It is a treatment that helps manage the disease.

>

> Good luck.

>

>

>