New Member

[Guest guest]

To and Jean:

What is reactive arthritis?

Also, thanks /sbc for your v. encouraging message for those of us new

to AP and hoping/praying/wondering, etc. whether it really works and works

for the long term.

Do you have any joint or cartilige damage that you know of? And, if you

don't mind, at what age were you diagnosed? Thanks.

Pam

Re: rheumatic new member

Hi, /sbc.

Really glad to se your post. I have been using minocycline for 7 months for

reactive arthritis. We haven't heard a lot from ReA folks in this time, and

it sounds like that may have been your diagnosis.

How long did the AP take to work for you? What antiobiotic(s) did you use?

Did you use IV's? How long had you had arthritis before you started the AP?

Thanks for any answers and specific encouragement you can pass my way.

Jean

> hello!

> I've been reading the posts and thoght I would introduce myself.

> my naame is susan and i see there are alreasy other 's here so

> I'll go by sbc. I have been on the AP since '88. I first saw Dr.

> Oliver, then dr. in AL., then Dr. Whitman in N.J., and now

> being treated in AL again. the arthritis began with a Salmonella

> infection which went untreated and caused an immune defense

> response. I also forget to capitalize letters! Oh well. When I was

> seen in Arlington Va. i was also found to have mycoplasma orale and

> M. salivarium along with the HLA-B27 gene. My complete history was

> published in the road Back Foundation's INTERRUPTED JOURNEYS vol.5.

> I am glad to report that i am feeling very well despite the toll the

> arthritis took. Ther is light at the end of the tunnel, so I

> encourage those of you who are new to the AP to hang in there and

> don't give up! When I was going trough the worst period ther was no

> egroup to talk to! I think this is great! By the way, my SED rate

> is now 1 compared to the98 when i began treatment. All for now,talk

> later. susan/sbc

>

>

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[Guest guest]

Hi, Pam,

Reactive arthritis, sometimes called Reiter's arthritis, or Reiter's

syndrome if all the signs shows up, is an inflammatory arthritis which

follows an infection with any of several known triggering pathogens--mostly

food- or water-borne, like salmonella, or sexually transmitted, like

chlamydia. Some micoplasmas are known triggers for ReA.

Often, it shows up two or three weeks after a known exposure, as in food

poisoning, and the cause is clearly identifiable, but it can also appear

without a recognized triggering episode.

ReA is similar to Ankylosing Spondylitis, in that it tends to effect tendons

and ligaments and attachments of these to the bones often more than the

actual synovial joints themselves. AS tends to be more a disease of the

spinal joints, whereas ReA is more a disease of the peripheral joints, but

they both can and do effect both types of joint.

AS and ReA are both associated with the HLA B-27 tissue type, which

said she is positive for (I'm not.) This association is not as strong in

women as it is in men. Since these diseases have much in common with RA, but

also take a bit of their own track, I'm always a bit unsure how much of what

I see discussed on the list applies to me.

From what I can understand of Dr. Brown's work, he considered all the

diseases to exist along a spectrum, and the particular disease an individual

contracted was dependent upon what bug they came into contact with, and what

their genetic predispositions might be.

I read an interesting research abstract a while back from McGill University,

in which they studied a number of female patients who had been diagnosed

with fibromyalgia. They did more careful investigations, and found that a

large percentage of them actually had ReA or AS or another similar

inflammatory disease. Women often have a less distinct presentation of these

diseases than men, and the doctors love to make the FM diagnosis. Since

tendons, ligaments, and attachments are common targets of the inflammation,

this an easy quick and sloppy mistake to make.

Jean

> To and Jean:

>

> What is reactive arthritis?

>

> Also, thanks /sbc for your v. encouraging message for those of us new

> to AP and hoping/praying/wondering, etc. whether it really works and works

> for the long term.

>

> Do you have any joint or cartilige damage that you know of? And, if you

> don't mind, at what age were you diagnosed? Thanks.

> Pam

>

> Re: rheumatic new member

>

>

[Guest guest]

I was first diagnosed with Fibromyalgia, but my rheumy told me she thought

it was AS and RS. Though the x-rays were coming out ok at the time I already

have a curve in my upper back. She actually told me to go home and go to bed

because I wouldn't be able to get up again anyway. I didn't listen to

her.... I did get back up and have been fighting this thing. I have been

bedridden for months at a time and have had to use a cane in the past. I

always seem to bounce back and have done pretty good the past couple of

years when looking back at where I have been.... Still have constant pain

which is so HARD for other people to deal with... I don't get it so I just

smile and say I am ok.... Ok= I am alive and up.

Now my X-rays show damage in both my upper and lower back. Doctors are slow

to change the diagnoses even though I tested +HLA-B27. The thing that made

her check for this was a small remark I made about having pain in my heels.

I first had that 19 years ago when my oldest daughter was born. Then it hit

me again about 12 years later. I have always been what people would call

" sickly " I also have a heart disease which kept me from being very active.

The GP I am seeing now says this is definitely NOT Fibro. Finally...

Something I have known for years!!

She is also the doc that has me on the antibiodics, I asked her about it and

was shocked that she said there isn't anything else we can do...

Has anyone that is taking the Grapefruit seed had any stomach problems from

it. It is probably just me I can take Grape seed fine and I have been taking

a huge vitamin on the days that I am not on the Doxy.

Also another question, what are the pro's and con's between Doxy and Mino? I

am thinking of having her switch me only because of my stomach problems was

hoping the other set better... Still having problems with getting back on

track with the Doxy and I definitely have to take it with food usually I

have oatmeal for breakfast and that tends to help keep it down.

Thanks all,

Sherry

sometimes your the bug and sometimes you are the windshield

Subject: Re: rheumatic new member

>Hi, Pam,

>

>Reactive arthritis, sometimes called Reiter's arthritis, or Reiter's

>syndrome if all the signs shows up, is an inflammatory arthritis which

>follows an infection with any of several known triggering pathogens--mostly

>food- or water-borne, like salmonella, or sexually transmitted, like

>chlamydia. Some micoplasmas are known triggers for ReA.

>

>Often, it shows up two or three weeks after a known exposure, as in food

>poisoning, and the cause is clearly identifiable, but it can also appear

>without a recognized triggering episode.

>

>ReA is similar to Ankylosing Spondylitis, in that it tends to effect

tendons

>and ligaments and attachments of these to the bones often more than the

>actual synovial joints themselves. AS tends to be more a disease of the

>spinal joints, whereas ReA is more a disease of the peripheral joints, but

>they both can and do effect both types of joint.

>

>AS and ReA are both associated with the HLA B-27 tissue type, which

>said she is positive for (I'm not.) This association is not as strong in

>women as it is in men. Since these diseases have much in common with RA,

but

>also take a bit of their own track, I'm always a bit unsure how much of

what

>I see discussed on the list applies to me.

>

>>From what I can understand of Dr. Brown's work, he considered all the

>diseases to exist along a spectrum, and the particular disease an

individual

>contracted was dependent upon what bug they came into contact with, and

what

>their genetic predispositions might be.

>

>I read an interesting research abstract a while back from McGill

University,

>in which they studied a number of female patients who had been diagnosed

>with fibromyalgia. They did more careful investigations, and found that a

>large percentage of them actually had ReA or AS or another similar

>inflammatory disease. Women often have a less distinct presentation of

these

>diseases than men, and the doctors love to make the FM diagnosis. Since

>tendons, ligaments, and attachments are common targets of the inflammation,

>this an easy quick and sloppy mistake to make.

>

>Jean

>

>

>> To and Jean:

>>

>> What is reactive arthritis?

>>

>> Also, thanks /sbc for your v. encouraging message for those of us

new

>> to AP and hoping/praying/wondering, etc. whether it really works and

works

>> for the long term.

>>

>> Do you have any joint or cartilige damage that you know of? And, if you

>> don't mind, at what age were you diagnosed? Thanks.

>> Pam

>>

>> Re: rheumatic new member

>>

>>

>

>

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

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>1/2200/0/_/532797/_/955654912/

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

>

>

>

[Guest guest]

on 4/14/00 8:22 PM, Sherry Martz at tifkas@... wrote:

> Has anyone that is taking the Grapefruit seed had any stomach problems from

> it. It is probably just me I can take Grape seed fine and I have been taking

> a huge vitamin on the days that I am not on the Doxy.

> Also another question, what are the pro's and con's between Doxy and Mino? I

> am thinking of having her switch me only because of my stomach problems was

> hoping the other set better... Still having problems with getting back on

> track with the Doxy and I definitely have to take it with food usually I

> have oatmeal for breakfast and that tends to help keep it down.

Hi, Sherry,

Have you read that a low starch diet might be especially helpful for AS? I

know many believe this to be true for any inflammatory arthritis, but I

believe the klebsiella bug (which is associated with AS) has in particular

been studied for this effect. They say it doesn't have as much of its

preferred nourishment if you use a low-starch diet.

Funny, I used to eat oatmeal for breakfast most days, too, but am trying to

avoid more starches these days. Still thinking through what an appropriate

replacement might be, but am doing well with yogurt and fruit.

The biggest change I have seen so far on minocycline is a significant

reduction in the low-grade GI upset I used to have almost all the time. Now

I can eat a variety of foods much more comfortably than before. I was 10

pounds under-weight when I started this, and have gained about 7.

I don't have any experience with grapefuit seed extract. Hope you can get

back on track soon.

Jean

[Guest guest]

Hi Sherry,

Minocycline stays in the tissues longer than doxycycline - in general it's

easier

on the stomach for most people. Might be worth you trying and see if it suits

you better. Dr. Joe Mercola has a section on minocycline in his physicians'

protocol at rheumatic.org/protocol.htm.

Chris.

>Also another question, what are the pro's and con's between Doxy and Mino?

I

>am thinking of having her switch me only because of my stomach problems was

>hoping the other set better... Still having problems with getting back on

>track with the Doxy and I definitely have to take it with food usually I

>have oatmeal for breakfast and that tends to help keep it down.

>

>Thanks all,

>Sherry

[Guest guest]

Greg,

Thanks!! I found out the hard way that Doxy had to be taken with

food. My doc didn't seem to know this. They sent an info sheet with it this

time and it said to take it on a full stomach.

I wanted to also thank all you who prayed for me on the trip last week. They

ran a test to see if I have Lyme it came out negitive, the doc says that

does not mean that I don't have it...

anyway I am on two antyibiodics now and she doesnt want to switch to Mino,

not sure why.

My hands and right arm were feeling better by Friday morning. The swelling

and purple color is completely gone, they still ache but there is no pain.

I did have something strange happen on Sunday morning, I slept well (ok that

is strange for me but that isn't it.) I woke up with dark circles under both

eyes... the right eye was very dark and look like someone had slugged me. I

hadn't brought any foundation so I couldn't cover it. No one at church

mentioned it, so I hope it wasn't as noticable to them as it was to me. Of

course we were new and most of them don't know that there is anything wrong

with me to begin with. We are going back ONE MORE time!! Many of the

families were out because they had relatives graduating from college. So

they have asked us to come back up on the 21st and then they will take a

vote the following Sunday. After the vote I will be needing to find a doc in

MI around the Alpena or Grayling area if anyone knows of one please let me

know. We are looking forward to the move just getting a little impatient.

Both of our daughters are planning to move up with us. One has a job she is

going to stay at through the summer and then come up and go back to college

up there. The other just quit her job so she isn't concerned about staying

here, she will start college next fall. I am really happy that they have

decided to come with us. No matter how old they get they are still my kids.

God has really blessed us.

Blessings,

Sherry

>Sherry,

>

>I too have AS/RS. I've had it for approx. 10 years. I' ve used soxy and

>Minocycline. Doxy must be take with food but I find it causes me less

>problems overall. Minocycline made me dizzy most of the time. I've

recently

>added Zithromax. This is a different class of antibiotics which has the

>ability to kill the mycoplasma. I currently take doxy 2x a day 100mg

>tues,wed,thurs,sat,sun and Zithro mon and friday. Check out the web site

>kickas.org/ This site is more focused on people with AS.

>

>Good Luck,

>

>Greg

[Guest guest]

Smart doctor, hang on to him. Most doctors won't even talk about lyme and

dismiss it instantly with the lame tests that exist today. I have

Lyme...since 1990. Is your doctor in Mich? I live in the Detroitish area and

am always looking for good doctors...

> They

> ran a test to see if I have Lyme it came out negitive, the doc says that

> does not mean that I don't have it...

[Guest guest]

,

We are living in In about 5 minutes south of the MI boarder right now. We

will most likely be moving to MI in June sometime.... We are going to be

making another trip up there on the weekend of the 21st. The town is really

small it is called Comins right nect to another small town called Fairfiew.

You might remember the tornado last July 3rd that came through there and

wiped most of it out. The church and parsonage that were taken out have been

rebuilt and they need a pastor, so that is why we have been going up there.

I am still surprised how well I made the last trip. Saturday was rough

starting out but I got better as the day went on.God really blessed us!

Strom coming better get off!!! My doc is going to treat me for Lyme I am

glad because I think the xtra antibiodic might really help.

Blessings,

Sherry

>Smart doctor, hang on to him. Most doctors won't even talk about lyme and

>dismiss it instantly with the lame tests that exist today. I have

>Lyme...since 1990. Is your doctor in Mich? I live in the Detroitish area

and

>am always looking for good doctors...

>

>

>> They

>> ran a test to see if I have Lyme it came out negitive, the doc says that

>> does not mean that I don't have it...

>

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>

>

[Guest guest]

I have to take the doxy after I have eaten or it does not stay down when i

tried taking it on an empty stomach I was up for two nights with terrible

stomach pain. I was off the antibiodics for almost two weeks trying to get

my stomach settled back down. My stomach does not work properly to begin

with and i have to be very careful what I eat. I also found out for anyone

who is taking antiacids that you should take them at least an hour away from

the rest of your meds. I already space everything I take out but I have on

occasion taken that with another med. I believe that if someone can take it

on an empty stomach and have been that they should continue what they are

doing. I just got the info again from the drug company saying to take it on

a full stomach, but it also said it could be taken with a glass of milk... I

don't think I wanna try that... It does say not to take any Supplaments such

as Calcium two hours after taking it. It says it will not be absorbed

properly. I don't have any dairy products on the same day I take my doxy. I

normally have a bowl of oatmeal and then about thirty to forty min later I

take the first one then I take the second one after dinner. I found that

spreading them out also helps. I think you are right on the way it should be

taken for the AP I just cant take it that way. It still seems to be working.

My hands are so much better since last week. No swelling and very little

pain and sometimes there is NO pain!! I have seen some small steps and in

general feel better. I have actaully been able to sleep again!!!!

One other thing that has helped a lot is taking Grape Seed extract with it.

I was surprised that my doc knew what it was ans said to keep taking it that

it was GREAT!! I can not keep the grapefruit seed down either.

Thanks for your imput Gena!!

Blessings all,

Sherry

>Hi Guys,

>I know I had a disagreement with somone else on the list before this on

this

>matter and don't want to step on any toes, however, though I think it is

>o.k. to eat a cracker or something small to help the doxy go down better, I

>don't think it gets absorbed as well into your whole body system on a full

>stomach. If you follow Dr. Garth Nicholson at all and his research and

>protocol for treating mycoplasmas, he says that food reduces the absorbtion

>rate of tetracyclines. For this reason, I have always taken my doxy or mino

>two hours away from a full meal. Also, calcium products especially and

>minerals knock out the antibiotics action (doxy included) unless at least

>two hours away. My local support group leader who knows both Dr. Nicholson

>and Dr. Franco stresses this fact also. If you are having stomach problems,

>often, a good acidophilus product can help taken two or more hours

>beforehand of your antibiotics. I know the print -out with your doxy says

to

>take it on a full stomach but you have to remember that it is a general

>recommendation and that most pharmacists (maybe all pharmacists) no

nothing

>about the use of antibiotics for rheumatic illnesses. SIncerely, Gena

>Castanon genaca@...

>

>>Greg,

>>

>>Thanks!! I found out the hard way that Doxy had to be taken with

>>food. My doc didn't seem to know this. They sent an info sheet with it

this

>>time and it said to take it on a full stomach.

>>I wanted to also thank all you who prayed for me on the trip last week.

>They

>>ran a test to see if I have Lyme it came out negitive, the doc says that

>>does not mean that I don't have it...

>>anyway I am on two antyibiodics now and she doesnt want to switch to Mino,

>>not sure why.

>>My hands and right arm were feeling better by Friday morning. The swelling

>>and purple color is completely gone, they still ache but there is no pain.

>>I did have something strange happen on Sunday morning, I slept well (ok

>that

>>is strange for me but that isn't it.) I woke up with dark circles under

>both

>>eyes... the right eye was very dark and look like someone had slugged me.

I

>>hadn't brought any foundation so I couldn't cover it. No one at church

>>mentioned it, so I hope it wasn't as noticable to them as it was to me. Of

>>course we were new and most of them don't know that there is anything

wrong

>>with me to begin with. We are going back ONE MORE time!! Many of the

>>families were out because they had relatives graduating from college. So

>>they have asked us to come back up on the 21st and then they will take a

>>vote the following Sunday. After the vote I will be needing to find a doc

>in

>>MI around the Alpena or Grayling area if anyone knows of one please let me

>>know. We are looking forward to the move just getting a little impatient.

>>Both of our daughters are planning to move up with us. One has a job she

is

>>going to stay at through the summer and then come up and go back to

college

>>up there. The other just quit her job so she isn't concerned about staying

>>here, she will start college next fall. I am really happy that they have

>>decided to come with us. No matter how old they get they are still my

kids.

>>God has really blessed us.

>>

>>Blessings,

>>Sherry

>>

>>>Sherry,

>>>

>>>I too have AS/RS. I've had it for approx. 10 years. I' ve used soxy and

>>

>>>Minocycline. Doxy must be take with food but I find it causes me less

>>>problems overall. Minocycline made me dizzy most of the time. I've

>>recently

>>>added Zithromax. This is a different class of antibiotics which has the

>>>ability to kill the mycoplasma. I currently take doxy 2x a day 100mg

>>>tues,wed,thurs,sat,sun and Zithro mon and friday. Check out the web site

>>>kickas.org/ This site is more focused on people with AS.

>>>

>>>Good Luck,

>>>

>>>Greg

>>

>>

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

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>>To unsubscribe, email: rheumatic-unsubscribeegroups

>>

>>

>>

>

>

[Guest guest]

Hi Sherry,

I also take my meds with meals - my stomach just can't handle it otherwise

(I don't have them with milk or antacids however). My AP doctor is fine

with that, as she thinks it is better not to irritate the stomach further

and at least get some (hopefully most) of the antibiotics absorbed that

continue to distress the stomach. I have to take the clindamycin capsules

literally half-way through my meal in order not to have bad reflux and yucky

tummy. I know that ideally they should be taken a couple of hours away from

food but that just doesn't work for me. ( I also find them easier to

remember this way!) However, the AP seems to be working, although it is

early days. Hope you continue to improve!

Lara

Re: rheumatic new member

> I have to take the doxy after I have eaten or it does not stay down when i

> tried taking it on an empty stomach I was up for two nights with terrible

> stomach pain. I was off the antibiodics for almost two weeks trying to get

> my stomach settled back down. My stomach does not work properly to begin

> with and i have to be very careful what I eat. I also found out for anyone

> who is taking antiacids that you should take them at least an hour away

from

> the rest of your meds. I already space everything I take out but I have on

> occasion taken that with another med. I believe that if someone can take

it

> on an empty stomach and have been that they should continue what they are

> doing. I just got the info again from the drug company saying to take it

on

> a full stomach, but it also said it could be taken with a glass of milk...

I

> don't think I wanna try that... It does say not to take any Supplaments

such

> as Calcium two hours after taking it. It says it will not be absorbed

> properly. I don't have any dairy products on the same day I take my doxy.

I

> normally have a bowl of oatmeal and then about thirty to forty min later I

> take the first one then I take the second one after dinner. I found that

> spreading them out also helps. I think you are right on the way it should

be

> taken for the AP I just cant take it that way. It still seems to be

working.

> My hands are so much better since last week. No swelling and very little

> pain and sometimes there is NO pain!! I have seen some small steps and in

> general feel better. I have actaully been able to sleep again!!!!

> One other thing that has helped a lot is taking Grape Seed extract with

it.

> I was surprised that my doc knew what it was ans said to keep taking it

that

> it was GREAT!! I can not keep the grapefruit seed down either.

> Thanks for your imput Gena!!

> Blessings all,

> Sherry

>

>

> >Hi Guys,

> >I know I had a disagreement with somone else on the list before this on

> this

> >matter and don't want to step on any toes, however, though I think it is

> >o.k. to eat a cracker or something small to help the doxy go down better,

I

> >don't think it gets absorbed as well into your whole body system on a

full

> >stomach. If you follow Dr. Garth Nicholson at all and his research and

> >protocol for treating mycoplasmas, he says that food reduces the

absorbtion

> >rate of tetracyclines. For this reason, I have always taken my doxy or

mino

> >two hours away from a full meal. Also, calcium products especially and

> >minerals knock out the antibiotics action (doxy included) unless at least

> >two hours away. My local support group leader who knows both Dr.

Nicholson

> >and Dr. Franco stresses this fact also. If you are having stomach

problems,

> >often, a good acidophilus product can help taken two or more hours

> >beforehand of your antibiotics. I know the print -out with your doxy says

> to

> >take it on a full stomach but you have to remember that it is a general

> >recommendation and that most pharmacists (maybe all pharmacists) no

> nothing

> >about the use of antibiotics for rheumatic illnesses. SIncerely, Gena

> >Castanon genaca@...

>

>

> >

> >>Greg,

> >>

> >>Thanks!! I found out the hard way that Doxy had to be taken with

> >>food. My doc didn't seem to know this. They sent an info sheet with it

> this

> >>time and it said to take it on a full stomach.

> >>I wanted to also thank all you who prayed for me on the trip last week.

> >They

> >>ran a test to see if I have Lyme it came out negitive, the doc says that

> >>does not mean that I don't have it...

> >>anyway I am on two antyibiodics now and she doesnt want to switch to

Mino,

> >>not sure why.

> >>My hands and right arm were feeling better by Friday morning. The

swelling

> >>and purple color is completely gone, they still ache but there is no

pain.

> >>I did have something strange happen on Sunday morning, I slept well (ok

> >that

> >>is strange for me but that isn't it.) I woke up with dark circles under

> >both

> >>eyes... the right eye was very dark and look like someone had slugged

me.

> I

> >>hadn't brought any foundation so I couldn't cover it. No one at church

> >>mentioned it, so I hope it wasn't as noticable to them as it was to me.

Of

> >>course we were new and most of them don't know that there is anything

> wrong

> >>with me to begin with. We are going back ONE MORE time!! Many of the

> >>families were out because they had relatives graduating from college. So

> >>they have asked us to come back up on the 21st and then they will take a

> >>vote the following Sunday. After the vote I will be needing to find a

doc

> >in

> >>MI around the Alpena or Grayling area if anyone knows of one please let

me

> >>know. We are looking forward to the move just getting a little

impatient.

> >>Both of our daughters are planning to move up with us. One has a job she

> is

> >>going to stay at through the summer and then come up and go back to

> college

> >>up there. The other just quit her job so she isn't concerned about

staying

> >>here, she will start college next fall. I am really happy that they have

> >>decided to come with us. No matter how old they get they are still my

> kids.

> >>God has really blessed us.

> >>

> >>Blessings,

> >>Sherry

> >>

> >>>Sherry,

> >>>

> >>>I too have AS/RS. I've had it for approx. 10 years. I' ve used soxy

and

> >>

> >>>Minocycline. Doxy must be take with food but I find it causes me less

> >>>problems overall. Minocycline made me dizzy most of the time. I've

> >>recently

> >>>added Zithromax. This is a different class of antibiotics which has

the

> >>>ability to kill the mycoplasma. I currently take doxy 2x a day 100mg

> >>>tues,wed,thurs,sat,sun and Zithro mon and friday. Check out the web

site

> >>>kickas.org/ This site is more focused on people with AS.

> >>>

> >>>Good Luck,

> >>>

> >>>Greg

> >>

> >>

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

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[Guest guest]

Hi ,

My tummy gets very acidic, a bit like heartburn, and I " burp " a lot in an

acidic way (does that make sense??). I have found this is minimised by

taking my clindamycin capsule in the middle of a meal. The minocycline

isn't such a problem for me. I also find that I need to have something to

eat every few hours, but I have always been a bit like that (before the

RA) - if I have an empty stomach for too long, I become nauseous. During my

late teen and early twenties (I'm now in my early thirties) I would even get

" vomiting attacks " if I went more than about three or four hours without any

food or drink, where I would vomit every 20 minutes for 4 to 7 hours (my GP

used to call them " abdominal migraines " - who knows what they really were).

Thank goodness I don't get them any more. So I am pretty hesitant about

doing anything that upsets my stomach!!

Lara

Re: rheumatic new member

> >

> >

> >> I have to take the doxy after I have eaten or it does not stay down

when i

> >> tried taking it on an empty stomach I was up for two nights with

terrible

> >> stomach pain. I was off the antibiodics for almost two weeks trying to

get

> >> my stomach settled back down. My stomach does not work properly to

begin

> >> with and i have to be very careful what I eat. I also found out for

anyone

> >> who is taking antiacids that you should take them at least an hour away

> >from

> >> the rest of your meds. I already space everything I take out but I have

on

> >> occasion taken that with another med. I believe that if someone can

take

> >it

> >> on an empty stomach and have been that they should continue what they

are

> >> doing. I just got the info again from the drug company saying to take

it

> >on

> >> a full stomach, but it also said it could be taken with a glass of

milk...

> >I

> >> don't think I wanna try that... It does say not to take any Supplaments

> >such

> >> as Calcium two hours after taking it. It says it will not be absorbed

> >> properly. I don't have any dairy products on the same day I take my

doxy.

> >I

> >> normally have a bowl of oatmeal and then about thirty to forty min

later I

> >> take the first one then I take the second one after dinner. I found

that

> >> spreading them out also helps. I think you are right on the way it

should

> >be

> >> taken for the AP I just cant take it that way. It still seems to be

> >working.

> >> My hands are so much better since last week. No swelling and very

little

> >> pain and sometimes there is NO pain!! I have seen some small steps and

in

> >> general feel better. I have actaully been able to sleep again!!!!

> >> One other thing that has helped a lot is taking Grape Seed extract with

> >it.

> >> I was surprised that my doc knew what it was ans said to keep taking it

> >that

> >> it was GREAT!! I can not keep the grapefruit seed down either.

> >> Thanks for your imput Gena!!

> >> Blessings all,

> >> Sherry

> >>

> >>

> >> >Hi Guys,

> >> >I know I had a disagreement with somone else on the list before this

on

> >> this

> >> >matter and don't want to step on any toes, however, though I think it

is

> >> >o.k. to eat a cracker or something small to help the doxy go down

better,

> >I

> >> >don't think it gets absorbed as well into your whole body system on a

> >full

> >> >stomach. If you follow Dr. Garth Nicholson at all and his research and

> >> >protocol for treating mycoplasmas, he says that food reduces the

> >absorbtion

> >> >rate of tetracyclines. For this reason, I have always taken my doxy or

> >mino

> >> >two hours away from a full meal. Also, calcium products especially and

> >> >minerals knock out the antibiotics action (doxy included) unless at

least

> >> >two hours away. My local support group leader who knows both Dr.

> >Nicholson

> >> >and Dr. Franco stresses this fact also. If you are having stomach

> >problems,

> >> >often, a good acidophilus product can help taken two or more hours

> >> >beforehand of your antibiotics. I know the print -out with your doxy

says

> >> to

> >> >take it on a full stomach but you have to remember that it is a

general

> >> >recommendation and that most pharmacists (maybe all pharmacists) no

> >> nothing

> >> >about the use of antibiotics for rheumatic illnesses. SIncerely, Gena

> >> >Castanon genaca@...

> >>

> >>

> >> >

> >> >>Greg,

> >> >>

> >> >>Thanks!! I found out the hard way that Doxy had to be taken

with

> >> >>food. My doc didn't seem to know this. They sent an info sheet with

it

> >> this

> >> >>time and it said to take it on a full stomach.

> >> >>I wanted to also thank all you who prayed for me on the trip last

week.

> >> >They

> >> >>ran a test to see if I have Lyme it came out negitive, the doc says

that

> >> >>does not mean that I don't have it...

> >> >>anyway I am on two antyibiodics now and she doesnt want to switch to

> >Mino,

> >> >>not sure why.

> >> >>My hands and right arm were feeling better by Friday morning. The

> >swelling

> >> >>and purple color is completely gone, they still ache but there is no

> >pain.

> >> >>I did have something strange happen on Sunday morning, I slept well

(ok

> >> >that

> >> >>is strange for me but that isn't it.) I woke up with dark circles

under

> >> >both

> >> >>eyes... the right eye was very dark and look like someone had slugged

> >me.

> >> I

> >> >>hadn't brought any foundation so I couldn't cover it. No one at

church

> >> >>mentioned it, so I hope it wasn't as noticable to them as it was to

me.

> >Of

> >> >>course we were new and most of them don't know that there is anything

> >> wrong

> >> >>with me to begin with. We are going back ONE MORE time!! Many of the

> >> >>families were out because they had relatives graduating from college.

So

> >> >>they have asked us to come back up on the 21st and then they will

take a

> >> >>vote the following Sunday. After the vote I will be needing to find a

> >doc

> >> >in

> >> >>MI around the Alpena or Grayling area if anyone knows of one please

let

> >me

> >> >>know. We are looking forward to the move just getting a little

> >impatient.

> >> >>Both of our daughters are planning to move up with us. One has a job

she

> >> is

> >> >>going to stay at through the summer and then come up and go back to

> >> college

> >> >>up there. The other just quit her job so she isn't concerned about

> >staying

> >> >>here, she will start college next fall. I am really happy that they

have

> >> >>decided to come with us. No matter how old they get they are still my

> >> kids.

> >> >>God has really blessed us.

> >> >>

> >> >>Blessings,

> >> >>Sherry

> >> >>

> >> >>>Sherry,

> >> >>>

> >> >>>I too have AS/RS. I've had it for approx. 10 years. I' ve used

soxy

> >and

> >> >>

> >> >>>Minocycline. Doxy must be take with food but I find it causes me

less

> >> >>>problems overall. Minocycline made me dizzy most of the time. I've

> >> >>recently

> >> >>>added Zithromax. This is a different class of antibiotics which has

> >the

> >> >>>ability to kill the mycoplasma. I currently take doxy 2x a day

100mg

> >> >>>tues,wed,thurs,sat,sun and Zithro mon and friday. Check out the web

> >site

> >> >>>kickas.org/ This site is more focused on people with AS.

> >> >>>

> >> >>>Good Luck,

> >> >>>

> >> >>>Greg

> >> >>

> >> >>

> >>

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

> >> >>Bids starting at $7 for thousands of products - uBid.com

> >> >>1/3027/0/_/532797/_/957985459/

> >>

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

> >> >>

> >> >>To unsubscribe, email: rheumatic-unsubscribeegroups

> >> >>

> >> >>

> >> >>

> >> >

> >> >

> >>

> >>

>

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[Guest guest]

Hi Lara,

I've never had the extreme of being sick if I didn't eat every few hours, but

it sure does make me nauseous. I try to eat little amounts every 2-3 hours and

thats about all my stomach can hold now. I was that way for last several years

even before the RA, but it seems even more neccessary now. T.

DanLara DamenFinlayson wrote:

> Hi ,

> My tummy gets very acidic, a bit like heartburn, and I " burp " a lot in an

> acidic way (does that make sense??). I have found this is minimised by

> taking my clindamycin capsule in the middle of a meal. The minocycline

> isn't such a problem for me. I also find that I need to have something to

> eat every few hours, but I have always been a bit like that (before the

> RA) - if I have an empty stomach for too long, I become nauseous. During my

> late teen and early twenties (I'm now in my early thirties) I would even get

> " vomiting attacks " if I went more than about three or four hours without any

> food or drink, where I would vomit every 20 minutes for 4 to 7 hours (my GP

> used to call them " abdominal migraines " - who knows what they really were).

> Thank goodness I don't get them any more. So I am pretty hesitant about

> doing anything that upsets my stomach!!

> Lara

> Re: rheumatic new member

> > >

> > >

> > >> I have to take the doxy after I have eaten or it does not stay down

> when i

> > >> tried taking it on an empty stomach I was up for two nights with

> terrible

> > >> stomach pain. I was off the antibiodics for almost two weeks trying to

> get

> > >> my stomach settled back down. My stomach does not work properly to

> begin

> > >> with and i have to be very careful what I eat. I also found out for

> anyone

> > >> who is taking antiacids that you should take them at least an hour away

> > >from

> > >> the rest of your meds. I already space everything I take out but I have

> on

> > >> occasion taken that with another med. I believe that if someone can

> take

> > >it

> > >> on an empty stomach and have been that they should continue what they

> are

> > >> doing. I just got the info again from the drug company saying to take

> it

> > >on

> > >> a full stomach, but it also said it could be taken with a glass of

> milk...

> > >I

> > >> don't think I wanna try that... It does say not to take any Supplaments

> > >such

> > >> as Calcium two hours after taking it. It says it will not be absorbed

> > >> properly. I don't have any dairy products on the same day I take my

> doxy.

> > >I

> > >> normally have a bowl of oatmeal and then about thirty to forty min

> later I

> > >> take the first one then I take the second one after dinner. I found

> that

> > >> spreading them out also helps. I think you are right on the way it

> should

> > >be

> > >> taken for the AP I just cant take it that way. It still seems to be

> > >working.

> > >> My hands are so much better since last week. No swelling and very

> little

> > >> pain and sometimes there is NO pain!! I have seen some small steps and

> in

> > >> general feel better. I have actaully been able to sleep again!!!!

> > >> One other thing that has helped a lot is taking Grape Seed extract with

> > >it.

> > >> I was surprised that my doc knew what it was ans said to keep taking it

> > >that

> > >> it was GREAT!! I can not keep the grapefruit seed down either.

> > >> Thanks for your imput Gena!!

> > >> Blessings all,

> > >> Sherry

> > >>

> > >>

> > >> >Hi Guys,

> > >> >I know I had a disagreement with somone else on the list before this

> on

> > >> this

> > >> >matter and don't want to step on any toes, however, though I think it

> is

> > >> >o.k. to eat a cracker or something small to help the doxy go down

> better,

> > >I

> > >> >don't think it gets absorbed as well into your whole body system on a

> > >full

> > >> >stomach. If you follow Dr. Garth Nicholson at all and his research and

> > >> >protocol for treating mycoplasmas, he says that food reduces the

> > >absorbtion

> > >> >rate of tetracyclines. For this reason, I have always taken my doxy or

> > >mino

> > >> >two hours away from a full meal. Also, calcium products especially and

> > >> >minerals knock out the antibiotics action (doxy included) unless at

> least

> > >> >two hours away. My local support group leader who knows both Dr.

> > >Nicholson

> > >> >and Dr. Franco stresses this fact also. If you are having stomach

> > >problems,

> > >> >often, a good acidophilus product can help taken two or more hours

> > >> >beforehand of your antibiotics. I know the print -out with your doxy

> says

> > >> to

> > >> >take it on a full stomach but you have to remember that it is a

> general

> > >> >recommendation and that most pharmacists (maybe all pharmacists) no

> > >> nothing

> > >> >about the use of antibiotics for rheumatic illnesses. SIncerely, Gena

> > >> >Castanon genaca@...

> > >>

> > >>

> > >> >

> > >> >>Greg,

> > >> >>

> > >> >>Thanks!! I found out the hard way that Doxy had to be taken

> with

> > >> >>food. My doc didn't seem to know this. They sent an info sheet with

> it

> > >> this

> > >> >>time and it said to take it on a full stomach.

> > >> >>I wanted to also thank all you who prayed for me on the trip last

> week.

> > >> >They

> > >> >>ran a test to see if I have Lyme it came out negitive, the doc says

> that

> > >> >>does not mean that I don't have it...

> > >> >>anyway I am on two antyibiodics now and she doesnt want to switch to

> > >Mino,

> > >> >>not sure why.

> > >> >>My hands and right arm were feeling better by Friday morning. The

> > >swelling

> > >> >>and purple color is completely gone, they still ache but there is no

> > >pain.

> > >> >>I did have something strange happen on Sunday morning, I slept well

> (ok

> > >> >that

> > >> >>is strange for me but that isn't it.) I woke up with dark circles

> under

> > >> >both

> > >> >>eyes... the right eye was very dark and look like someone had slugged

> > >me.

> > >> I

> > >> >>hadn't brought any foundation so I couldn't cover it. No one at

> church

> > >> >>mentioned it, so I hope it wasn't as noticable to them as it was to

> me.

> > >Of

> > >> >>course we were new and most of them don't know that there is anything

> > >> wrong

> > >> >>with me to begin with. We are going back ONE MORE time!! Many of the

> > >> >>families were out because they had relatives graduating from college.

> So

> > >> >>they have asked us to come back up on the 21st and then they will

> take a

> > >> >>vote the following Sunday. After the vote I will be needing to find a

> > >doc

> > >> >in

> > >> >>MI around the Alpena or Grayling area if anyone knows of one please

> let

> > >me

> > >> >>know. We are looking forward to the move just getting a little

> > >impatient.

> > >> >>Both of our daughters are planning to move up with us. One has a job

> she

> > >> is

> > >> >>going to stay at through the summer and then come up and go back to

> > >> college

> > >> >>up there. The other just quit her job so she isn't concerned about

> > >staying

> > >> >>here, she will start college next fall. I am really happy that they

> have

> > >> >>decided to come with us. No matter how old they get they are still my

> > >> kids.

> > >> >>God has really blessed us.

> > >> >>

> > >> >>Blessings,

> > >> >>Sherry

> > >> >>

> > >> >>>Sherry,

> > >> >>>

> > >> >>>I too have AS/RS. I've had it for approx. 10 years. I' ve used

> soxy

> > >and

> > >> >>

> > >> >>>Minocycline. Doxy must be take with food but I find it causes me

> less

> > >> >>>problems overall. Minocycline made me dizzy most of the time. I've

> > >> >>recently

> > >> >>>added Zithromax. This is a different class of antibiotics which has

> > >the

> > >> >>>ability to kill the mycoplasma. I currently take doxy 2x a day

> 100mg

> > >> >>>tues,wed,thurs,sat,sun and Zithro mon and friday. Check out the web

> > >site

> > >> >>>kickas.org/ This site is more focused on people with AS.

> > >> >>>

> > >> >>>Good Luck,

> > >> >>>

> > >> >>>Greg

> > >> >>

> > >> >>

> > >>

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

> > >> >>Bids starting at $7 for thousands of products - uBid.com

> > >> >>1/3027/0/_/532797/_/957985459/

> > >>

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

> > >> >>

> > >> >>To unsubscribe, email: rheumatic-unsubscribeegroups

> > >> >>

> > >> >>

> > >> >>

> > >> >

> > >> >

> > >>

> > >>

> >

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

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> > >> Try @Backup FREE and recieve 300 points from mypoints.com Install now:

> > >> 1/2345/0/_/532797/_/958067358/

> >

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

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> > >>

> > >>

> > >

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> > >1/4013/0/_/532797/_/958082606/

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[Guest guest]

I actually bought the Grape Seed Extract for yeast infections, it has kept

them under contol. I found that is also settles my stomach better than the

meds do. I even took it for a migraine that was starting just to see what

would happen... and my actuall stopped hurting. I was very surprised, my

daughter also battles with stomach problems and she has been taking them as

needed to settle her stomach too. Someone posted about some of the benifits

here and that is how I found out about them. My doc said they were really

good to take. I was going to try the aloe vera juice but since this works I

dont need to right now. One of my biggest problems is that something like

this will work for me for awhile and then stop. Mybe since it suppose to be

all natural it will continue working...

I also have reflux and take 3 - 200mg generic Tagament daily and that has

helped reduce that acid. Somtimes I will take Maylox But I really dont like

the taste!!!!!!!! I saw it is out now in chewable flavored tablets last

night at Walmart. That would come in handy on the road.

This week after our trip has been a little tough, one of the things that

happened it that my husband orders my meds on line and there was a

missunderstanding as to what I needed so.... I was taking half of my normal

dose of the med I use to control the muscle spasms and then ran out on

Friday. Apparently God was watching over me, cuz Thursday night I didn't get

any sleep and felt pretty aweful on Friday. UPS had left the med at out

nighbors house,he said he thought is was med and didnt was us to have to

wait over the weekend to get it. Wow how many people think about stuff like

that? Anyway the neighbor brought it over yesterday and what a relief!! I

still had trouble sleeping and am in a lot of pain today, they build up in

your system. Since I never completely stopped taking them, they should kick

in by Monday.

Blessings all.

Sherry

>Hi Sherry,

>I am so glad to hear you are improving with taking the doxy the way you

are.

>Also, I am glad you didn't find my advice offensive and that I just care

for

>anyone trying to do this therapy. I feel that if you feel you are getting

>improvement than by all means keep it up! I tried doxy for 8 months with no

>herx and no improvement. Now I have been going the minocin route and have

>been going through a bad herx so am looking towards good days. As far as

>your bad stomach problems go, have you ever tried taking the good

>acidophilus products for it? I know that I had problems with doxy until I

>started one and then was able to wait two hours between food and taking it.

>Also, do you take the grape seed extract because it is a strong

>anti-oxidant? SIncerely, Gena Castanon genaca@...

> Re: rheumatic new member

>

>

>>I have to take the doxy after I have eaten or it does not stay down when i

>>tried taking it on an empty stomach I was up for two nights with terrible

>>stomach pain. I was off the antibiodics for almost two weeks trying to get

>>my stomach settled back down. My stomach does not work properly to begin

>>with and i have to be very careful what I eat. I also found out for anyone

>>who is taking antiacids that you should take them at least an hour away

>from

>>the rest of your meds. I already space everything I take out but I have on

>>occasion taken that with another med. I believe that if someone can take

>it

>>on an empty stomach and have been that they should continue what they are

>>doing. I just got the info again from the drug company saying to take it

on

>>a full stomach, but it also said it could be taken with a glass of milk...

>I

>>don't think I wanna try that... It does say not to take any Supplaments

>such

>>as Calcium two hours after taking it. It says it will not be absorbed

>>properly. I don't have any dairy products on the same day I take my doxy.

I

>>normally have a bowl of oatmeal and then about thirty to forty min later I

>>take the first one then I take the second one after dinner. I found that

>>spreading them out also helps. I think you are right on the way it should

>be

>>taken for the AP I just cant take it that way. It still seems to be

>working.

>>My hands are so much better since last week. No swelling and very little

>>pain and sometimes there is NO pain!! I have seen some small steps and in

>>general feel better. I have actaully been able to sleep again!!!!

>>One other thing that has helped a lot is taking Grape Seed extract with

it.

>>I was surprised that my doc knew what it was ans said to keep taking it

>that

>>it was GREAT!! I can not keep the grapefruit seed down either.

>>Thanks for your imput Gena!!

>>Blessings all,

>>Sherry

>>

>>

>>>Hi Guys,

>>>I know I had a disagreement with somone else on the list before this on

>>this

>>>matter and don't want to step on any toes, however, though I think it is

>>>o.k. to eat a cracker or something small to help the doxy go down better,

>I

>>>don't think it gets absorbed as well into your whole body system on a

full

>>>stomach. If you follow Dr. Garth Nicholson at all and his research and

>>>protocol for treating mycoplasmas, he says that food reduces the

>absorbtion

>>>rate of tetracyclines. For this reason, I have always taken my doxy or

>mino

>>>two hours away from a full meal. Also, calcium products especially and

>>>minerals knock out the antibiotics action (doxy included) unless at least

>>>two hours away. My local support group leader who knows both Dr.

Nicholson

>>>and Dr. Franco stresses this fact also. If you are having stomach

>problems,

>>>often, a good acidophilus product can help taken two or more hours

>>>beforehand of your antibiotics. I know the print -out with your doxy says

>>to

>>>take it on a full stomach but you have to remember that it is a general

>>>recommendation and that most pharmacists (maybe all pharmacists) no

>>nothing

>>>about the use of antibiotics for rheumatic illnesses. SIncerely, Gena

>>>Castanon genaca@...

>>

>>

>>>

>>>>Greg,

>>>>

>>>>Thanks!! I found out the hard way that Doxy had to be taken with

>>>>food. My doc didn't seem to know this. They sent an info sheet with it

>>this

>>>>time and it said to take it on a full stomach.

>>>>I wanted to also thank all you who prayed for me on the trip last week.

>>>They

>>>>ran a test to see if I have Lyme it came out negitive, the doc says that

>>>>does not mean that I don't have it...

>>>>anyway I am on two antyibiodics now and she doesnt want to switch to

>Mino,

>>>>not sure why.

>>>>My hands and right arm were feeling better by Friday morning. The

>swelling

>>>>and purple color is completely gone, they still ache but there is no

>pain.

>>>>I did have something strange happen on Sunday morning, I slept well (ok

>>>that

>>>>is strange for me but that isn't it.) I woke up with dark circles under

>>>both

>>>>eyes... the right eye was very dark and look like someone had slugged

me.

>>I

>>>>hadn't brought any foundation so I couldn't cover it. No one at church

>>>>mentioned it, so I hope it wasn't as noticable to them as it was to me.

>Of

>>>>course we were new and most of them don't know that there is anything

>>wrong

>>>>with me to begin with. We are going back ONE MORE time!! Many of the

>>>>families were out because they had relatives graduating from college. So

>>>>they have asked us to come back up on the 21st and then they will take a

>>>>vote the following Sunday. After the vote I will be needing to find a

doc

>>>in

>>>>MI around the Alpena or Grayling area if anyone knows of one please let

>me

>>>>know. We are looking forward to the move just getting a little

>impatient.

>>>>Both of our daughters are planning to move up with us. One has a job she

>>is

>>>>going to stay at through the summer and then come up and go back to

>>college

>>>>up there. The other just quit her job so she isn't concerned about

>staying

>>>>here, she will start college next fall. I am really happy that they have

>>>>decided to come with us. No matter how old they get they are still my

>>kids.

>>>>God has really blessed us.

>>>>

>>>>Blessings,

>>>>Sherry

>>>>

>>>>>Sherry,

>>>>>

>>>>>I too have AS/RS. I've had it for approx. 10 years. I' ve used soxy

>and

>>>>

>>>>>Minocycline. Doxy must be take with food but I find it causes me less

>>>>>problems overall. Minocycline made me dizzy most of the time. I've

>>>>recently

>>>>>added Zithromax. This is a different class of antibiotics which has

the

>>>>>ability to kill the mycoplasma. I currently take doxy 2x a day 100mg

>>>>>tues,wed,thurs,sat,sun and Zithro mon and friday. Check out the web

>site

>>>>>kickas.org/ This site is more focused on people with AS.

>>>>>

>>>>>Good Luck,

>>>>>

>>>>>Greg

>>>>

>>>>

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>>>>To unsubscribe, email: rheumatic-unsubscribeegroups

>>>>

>>>>

>>>>

>>>

>>>

>>

>>

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

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>>

>

[Guest guest]

Gloria,

I take one to two a day, I take them twice a day when taking the doxy. It

has completely gotten rid of the yeast infections. I had one when I started

taking them it cleared up in about two days. I have never tried the other

one you mentioned. The grape seed extract is only like 5.00 at Walmart. It

has been well worth it for me!! Also if you can take the grapfruit seed my

husband really likes it. It didnt set well on my stomach but is clears up

infections also. We did have to order that one on line though.

Blessings,

Sherry

>Dear Sherry,

> Do you take just the grape seed or do you take asodofilus, too. I know

>I spelled that wrong, but... How much grape seed extract do you take? I

>have been getting yeast lately but don't really feel like ordering

>special asodofilus.

>Thanks,

>Gloria

>________________________________________________________________

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[Guest guest]

hi kandy my diaughter is using juice plus before she gets pregnat and will do

the rest of her life prevention is the key and nothing is bettter than food.

and juice plus is second best be welll jack

Jack and Bullion

1405 Melba Doyle

Decatur,Texas 76234

(940) 627 6584

www.juiceplus.com/+jb21754

[Guest guest]

Hi Kandy,

There is a lot of info here and I know you will find your way.

Toni

[Guest guest]

Yes, Gillian I have been reading your messages for the last couple of days

going back to May actually. I had pretty much figured that you were " off the

beam " but I mean that in the best possible way.

Remission was heavenly. In fact I didn't appreciate it until my PA came back.

At the time I was 1st dx'd my son was 2 1/2 yrs old and I was a single

parent. Very hard to cope but I soldiered on. When I went into remission it

was not a very gradual thing. Believe it or not it only took about a week for

all of my symptoms to totally resolve. However the memories of the pain were

so vivid that I knew exactly what was happening when it came back.

Luckily I don't seem to have the same foot problems that I have read on some

peoples' postings although I do find that any shoe or boot that laces over

the top front of my foot is no good. Buying sandels for the summer was an

adventure. I have found that shoes with elastic uppers are the best for me.

It was GREAT to come across the PA site. I have really enjoyed reading the

postings. I have to admit though I have been feeling a bit strange because my

case does not seem as advanced as some of yours do. I have read about people

in hospital, going to the MD every week, and having had sugery. I am still

able to take Kickbox 4 times per week and have just returned from Japan where

I did a fair amount of walking around viewing temples. So I have a bit of a

guilt complex. Is that normal?????

Question for anyone: When one of your joints is about to become affected does

it itch? I mean deeply - like the bones themselves are itchy? This happens to

me and I wondered if this was a typical thing or what?!?!?! Appreciate

answers from anyone with an opinion.

Thanks for this wonderful outlet. I read on one posting that when you have PA

you have to convince people that you are falling apart while you are still

looking pretty good. Have found the same to be true. Still feel bad though

when I can't work outside in the yard for as long as I'd like and have to

tell my husband that I'm going in the house. How do you handle this?

[Guest guest]

,

I can't tell you about the deep itch, because I itch all the time. As for

dealing with the lack of energy and yard work...We just have to remember there

isn't much we can do about and not beat ourselves up about it. Our friends, and

mates just have to learn to cope with the fact also. My husband does try to

understand most of the time, but there still are times he gets frustrated with

me.

Also don't feel guilty because you aren't as bad as some of us on the list. Just

be thankful you aren't there yet. And I pray you never get to the point of some

of us. As for me...I'm not as bad as some of them but I know that it can

progress. We just have to face the limitations as them come, no matter how

frustrating it may get.

Good luck in the acceptance of our lives as PA'ers.

Donna

[Guest guest]

Thank you for the kind words. I do consider myself lucky that I am not as

advanced

but do keep aware of what could be ahead.

My psoriasis is not widespread at all. Only have it in fingernails and

groin - not the sexiest place...........oh well. I'm more upset about the

fingernails since people always see them and ask what is wring with them.

They end up getting a 5 minute short version explanation of PA. It's always

something that they have never even heard of.

I was an activity director in a nursing home for 5yrs and I thought I had

seen every form of arthritis that there was. SURPRISE.

Back to the fingernail thing........any of the women - do you have any

advice about wearing nail polish? Currently I only wear it for special

ocassions and remove it the very next day. Any help will be appreciated.

H.

[Guest guest]

Did your Mom always tell you " wera clean underwear in case you're ever in an

accident " ?? I think the ER staff would be happy to see clean underwear -

even boxers!!!!!!!

Will have to talk to my MD - internist - about some sort of cream.

Thanks, H.

[Guest guest]

Thanks for your reply Donna. Did you continue to take

antinflammatory drugs while taking MTX?

W.

__________________________________________________

[Guest guest]

W, Welcome to the PA crowd.

MTX can be used with some other drugs, but I would get the Doc's okay. I

take MTX and celebrex and I am supposed to add Arava. Not sure I like all

that mix, but I am doing better than ever. Could be remission, but I will

take it no matter what. Folic Acid helps take care of some of the MTX side

effects, I take 400 mcg every day. Also my Rheumy Doc said it was fine to

take Tylenol if I had a really bad day, but not every day as it also can

effect your liver. I take two 500 MG caplets of Tylenol when needed, which

is about once or twice a week. It normally works for me, sort gets me over

the hump.

Bob in VA

[Guest guest]

wrote:

Thanks for your reply Donna. Did you continue to take

antinflammatory drugs while taking MTX?

W.,I've been sitting here trying to remember about the

antinflammatory...I think I did. I think he reduced the dosage though and I'm

thinking it was motrin 800mg 2x a day. Some of the members tell me that if you

take a folic acid it helps with the sickness. My rheumy didnt tell me that and

so I felt rotten 1/2 the time. You have to also be careful around infections of

any kind. Your immune system will be low. It works for some but others it

doesn't. Try it and if it doesn't do what you think it should then get off it.

By the way, I didn't lose any hair either. I kept praying if I lost any it would

be off my legs and I wouldn't have to shave them anymore. HA! No such luck. Keep

in touch, Donna

__________________________________________________

[Guest guest]

Rivky,

Thanks for the info. I saw the Dr. yesterday. I'm

having blood test and a chest and spine xray today or

tomorrow. If everything is okay I'm going to try the

MTX. If I have ugly side effects I will ask him about

the Enbrel. I have to say the thought of injecting

myself gives me goose bumps. Does the Enbrel work on

both the skin and joints?

--- F4s2many@... wrote:

> Hi !

>

> Welcome to this list. Did you start the MTX yet? If

> not, you might want to

> consider asking your Dr. to put you on ENBREL. It

> has worked wonders for me

> and for many others in this group. It is given

> twice weekly by self

> injections (a real pain but worth it). I personally

> have found it to be the

> first drug that actually worked for me with no side

> effects (except some site

> swelling which I found out was normal).

>

> The best part about the Enbrel is that it is much

> less toxic then MTX. If

> you have insurance, you should really pursue this

> option. (the injections

> cost about $125.00 per shot - over $1,000 per month)

>

> Let us know what your Dr. says after you ask him.

>

> Good Luck!

>

> Rivky :-)

>

>

__________________________________________________

[Guest guest]

Donna,

I'm so glad to hear that you didn't lose your hair. I

actually put off trying MTX until I cut my hair last

fall. Now it's to my shoulders instead of to my butt.

Guess that was vain, but with all the ugliness of this

disease I had to have something to be confident about.

My doctor also offer me pain meds for flare ups. This

was a first. I'd never had a dr. give me pain meds. In

fact the last rhuem. told me I had psychological

problems. Well yeah, no kidding, I've been in pain

continually since I was 22. I'm so glad I found this

new dr. Not that I don't need antidepressants, I take

them and they do help with coping. But I think the

last dr. was just very insensitive.

Anyway, he perscribed vicoprophen (sp). It's vicodin

and ibuprophen. Has anyone taken this? Comments?

Thanks.