Question

[Guest guest]

Sally:

No, I'm not yet in remission.  Started AP and LDN in April 2010.  I also take

probiotics, tumeric, Zyflamend, krill oil.  I am seeing only a slight

improvement in my feet/ankles and am now experiencing more involvement in my

knees, toes, and wrists/hands. 

I started with doxy (200mg MWF) and LDN (4.5 mn/day) in April 2010.  When

things

seemed to be moving too slowly, I switched to minocycline (200 mg MWF) in Dec

2010 for about a month.  RA Pain then started to really affect my knees which

were never a problem before.  Because pain increased so much, I went back to

doxy (200 mg MWF) but the knee pain/stiffness still persists, as does ankle and

wrist/hands problems.  Just this week I decided to go back to minocycline 100mg

MWF to see how that goes.  I am still taking 4.5 LDN at night. I am hopeful

things with work out.  I've tried to go gluten/dairy free but I found that diet

regime to be too limiting.  I'm still losing weight (down from 110 lb to 89

lbs)

so I try to eat whatever moves me at the moment.  My appetite really is not

that

good. I do try limit my gluten and dairy, however. 

Diane

________________________________

From: " mannasal@... " <mannasal@...>

rheumatic

Sent: Mon, March 21, 2011 1:56:54 PM

Subject: Re: rheumatic question

 

Hello Diane,

are you in remission with RA? Taking AP? best of health to you, sally

rheumatic question

Hi Everyone,

I know in my heart and subconscious that this will go away when AP kicks in

BUT..

I developed a bean size ? node that is painful to touch on the first little

joint of my big toe about 2 or so weeks ago. Thank goodness it is in a place

where it does not touch my shoe and I can walk. I had what I thot was a big

one( but it had no pain) on the top of my hand in 1998 and it went away

gradually. This one on my toe is getting a little flatter and bigger.

I just need some reassurance from someone who also has had a rheumatoid node

and it went away. Also tell me if you used anything on it. I am kinda

freaked out.

Thank you.

cooky

[Guest guest]

Thanks Diane,

I still have pain when it is touched but I am hoping it will go away completely.

Yes I still have inflammation and may have to go back on cortef even tho I

don’t want to. But I’m thinking I need something to cut the inflammation and

nsaids make me REALLY sick.

cooky

Subject: Re: rheumatic question

Hi Cooky:

I've had RA since April 2007. At first I had 3-4 nodules along the underside of

one arm (from elbow to wrist). I looked this up on Web MD and learned they are a

sign that one does have RA and are indicative of inflammation. The nodules were

hard and slighly painful to the touch. However, they did eventually go away.

Once in a while I can feel one on my elbows but it only lasts a day or two.

Diane

[Guest guest]

Hi Cookie,

did you do all your IV's at home? And had to pay for them? That's what I'll

have to do if I do them weekly, pay for them....which is challenging. I guess

I'll call Doc S. and see what he says. I do see less inflammation.....but then

past 2 days my elbows hurt after a month or so of not hurting. I do cry a lot

less, so that's a good sign that things are not as intense. Because of hip,

I've been on walker for over a year, and worse each day. One thing about

getting hip done.....I'll eventually not be using walker.

Gads, if it's not one thing....it's another. Now makes me want to go and eat

chocolate!! Even if I don't like it! Sally

Have you started back with the IV/s?

RE: rheumatic question

Sally I did 5 days many times in the past. After each 5 day treatment( I did 5

days after 10 weeks of once a week) I would see a disappearance of a symptomatic

joint or something would feel better. I did not do anything different. That was

in 97. This time I am seeing nothing really getting better. I do not have major

pain in my rotator cuffs but I still not dare stretch too far. My fingers and

hands are OK but if I use them too much they will hurt…not like this past

summer. Hands are still swollen.

I feel really bad that you did not have an “OHmy goodness no pain in-----â€.

I am hoping that you feel a lot better soon. Has any swelling gone?

Hugs

cooky

From: rheumatic [mailto:rheumatic ] On Behalf Of

mannasal@...

Hi Cookie,

the nodule below my elbow was very painful when I would put any weight on it (my

arm) Lately, I notice it is not painful, but don't know how long it's been

without pain. Mine came way after I had RA.

It is now 2 weeks from my 5 day IV. I perhaps feel a little better, but nothing

dramatic. My hands, wrists, left foot and knee are pretty bad. And then a lot of

my focus is on my right hip that is real painful. The home care who did the IV's

said the people they work with here doing same thing, they now are on a

maintenance of 900units every other week.

I don't know what to do, if anything.....any feedback from those who have done 5

days IVs? sally

[Guest guest]

From: rheumatic [mailto:rheumatic ] On Behalf Of

mannasal@...

Hi Cookie,

did you do all your IV's at home? I DID IN THE PAST AND I PAID FOR THE SOLUTION

AND MEDICINE (COPAY) AND TUBING. I GOT THE NEEDLES AT WORK. I GET IV’S NOW

AT THE LOCAL HOSPITAL AS AN OUTPATIENT AND I DO NOT PAY FOR ANYTHING. I WISH I

COULD HAVE DONE THIS IN THE PAST. had to pay for them? That's what I'll have to

do if I do them weekly, pay for them....which is challenging. CALL YOUR LOCAL

HOSPITAL AND SEE IF YOU CAN HAVE THEM DONE AS AN OUTPATIENT…MEDICARE WILL PAY

FOR ALL OF IT. I guess I'll call Doc S. and see what he says. I do see less

inflammation.....WONDERFUL but then past 2 days my elbows hurt after a month or

so of not hurting IT WILL STOP. I do cry a lot less, so that's a good sign that

things are not as intense. THAT IS GREAT. Because of hip, I've been on walker

for over a year, and worse each day. One thing about getting hip done.....I'll

eventually not be using walker. Look forward to that.

Gads, if it's not one thing....it's another. Now makes me want to go and eat

chocolate!! Even if I don't like it! Sally EAT SOME FOR ME TOO!

Have you started back with the IV/s?YES SINCE AUGUST OF LAST YEAR

HUGS

COOKY

_

[Guest guest]

Thanks Cookie, I'll see my lady good doc middle of April and will talk to her

about outpatient hospital (she's in touch with doc Sinnott learning of AP) Last

Aug is when I started AP, but now just doing my lst IV. So you've been doing

IV's since then....and not much better compared to before? That's a lot of

antibiotics going into our bodys.....it better be killing something (bad guys)

During my 5 day IV doc said to take my probiotics 3 x day. I'm stilling taking

3x day.....don't think I can take too much?

I'm staying with AP....yet still feel (pray) that the day comes (soon) that new

(or hidden) technology will come out with healthy/long lasting cures.

Cookie, I really appreciate all the help you give people on this site (and hope)

including me! Blessings, Sally

RE: rheumatic question

From: rheumatic [mailto:rheumatic ] On Behalf Of

mannasal@...

Hi Cookie,

did you do all your IV's at home? I DID IN THE PAST AND I PAID FOR THE SOLUTION

AND MEDICINE (COPAY) AND TUBING. I GOT THE NEEDLES AT WORK. I GET IV’S NOW AT

THE LOCAL HOSPITAL AS AN OUTPATIENT AND I DO NOT PAY FOR ANYTHING. I WISH I

COULD HAVE DONE THIS IN THE PAST. had to pay for them? That's what I'll have to

do if I do them weekly, pay for them....which is challenging. CALL YOUR LOCAL

HOSPITAL AND SEE IF YOU CAN HAVE THEM DONE AS AN OUTPATIENT…MEDICARE WILL PAY

FOR ALL OF IT. I guess I'll call Doc S. and see what he says. I do see less

inflammation.....WONDERFUL but then past 2 days my elbows hurt after a month or

so of not hurting IT WILL STOP. I do cry a lot less, so that's a good sign that

things are not as intense. THAT IS GREAT. Because of hip, I've been on walker

for over a year, and worse each day. One thing about getting hip done.....I'll

eventually not be using walker. Look forward to that.

Gads, if it's not one thing....it's another. Now makes me want to go and eat

chocolate!! Even if I don't like it! Sally EAT SOME FOR ME TOO!

Have you started back with the IV/s?YES SINCE AUGUST OF LAST YEAR

HUGS

COOKY

_

[Guest guest]

Hi Diane,

that's where my pain is also: foot, ankle, knee, hands, wrists. At times, it

comes and goes in different places (the jaw was a painful one). I'm not moving

around much, so that doesn't help. I was on LDN for several months, and didn't

reorder about 2 months ago. Can't say I feel much difference from stopping it,

or maybe will go back on it. I so wish for you, and all of us, to get some

relief from this pain! sally

rheumatic question

Hi Everyone,

I know in my heart and subconscious that this will go away when AP kicks in

BUT..

I developed a bean size ? node that is painful to touch on the first little

joint of my big toe about 2 or so weeks ago. Thank goodness it is in a place

where it does not touch my shoe and I can walk. I had what I thot was a big

one( but it had no pain) on the top of my hand in 1998 and it went away

gradually. This one on my toe is getting a little flatter and bigger.

I just need some reassurance from someone who also has had a rheumatoid node

and it went away. Also tell me if you used anything on it. I am kinda

freaked out.

Thank you.

cooky

[Guest guest]

Sally:

Thanks -- I hope we all rid ourselves of the pain -- some day.  I'm still

hopeful the AP and LDN will come through for me.

Diane

 

________________________________

From: " mannasal@... " <mannasal@...>

rheumatic

Sent: Tue, March 22, 2011 1:43:20 PM

Subject: Re: rheumatic question

 

Hi Diane,

that's where my pain is also: foot, ankle, knee, hands, wrists. At times, it

comes and goes in different places (the jaw was a painful one). I'm not moving

around much, so that doesn't help. I was on LDN for several months, and didn't

reorder about 2 months ago. Can't say I feel much difference from stopping it,

or maybe will go back on it. I so wish for you, and all of us, to get some

relief from this pain! sally

rheumatic question

Hi Everyone,

I know in my heart and subconscious that this will go away when AP kicks in

BUT..

I developed a bean size ? node that is painful to touch on the first little

joint of my big toe about 2 or so weeks ago. Thank goodness it is in a place

where it does not touch my shoe and I can walk. I had what I thot was a big

one( but it had no pain) on the top of my hand in 1998 and it went away

gradually. This one on my toe is getting a little flatter and bigger.

I just need some reassurance from someone who also has had a rheumatoid node

and it went away. Also tell me if you used anything on it. I am kinda

freaked out.

Thank you.

cooky

[Guest guest]

Diane,

I think it is a good move to go with minocycline. That it increased your joint

pain may be an indication that it is working.

See:

http://falconblanco.com/health/crisis.htm

Which explains why a good step for our health can make us feel worse at first.

Keep us posted on your progress. Amy

>

> Sally:

>

> No, I'm not yet in remission.  Started AP and LDN in April 2010.  I also

take

> probiotics, tumeric, Zyflamend, krill oil.  I am seeing only a slight

> improvement in my feet/ankles and am now experiencing more involvement in my

> knees, toes, and wrists/hands. 

>

>

> I started with doxy (200mg MWF) and LDN (4.5 mn/day) in April 2010.  When

things

> seemed to be moving too slowly, I switched to minocycline (200 mg MWF) in Dec

> 2010 for about a month.  RA Pain then started to really affect my knees which

> were never a problem before.  Because pain increased so much, I went back to

> doxy (200 mg MWF) but the knee pain/stiffness still persists, as does ankle

and

> wrist/hands problems.  Just this week I decided to go back to minocycline

100mg

> MWF to see how that goes.  I am still taking 4.5 LDN at night. I am hopeful

> things with work out.  I've tried to go gluten/dairy free but I found that

diet

> regime to be too limiting.  I'm still losing weight (down from 110 lb to 89

lbs)

> so I try to eat whatever moves me at the moment.  My appetite really is not

that

> good. I do try limit my gluten and dairy, however. 

>

> Diane

>

>

>

[Guest guest]

Thanks for the info, Amy.  I appreciate it.

Diane

________________________________

From: Amy <muttville@...>

rheumatic

Sent: Thu, March 24, 2011 9:11:30 AM

Subject: rheumatic Re: question

 

Diane,

I think it is a good move to go with minocycline. That it increased your joint

pain may be an indication that it is working.

See:

http://falconblanco.com/health/crisis.htm

Which explains why a good step for our health can make us feel worse at first.

Keep us posted on your progress. Amy

>

> Sally:

>

> No, I'm not yet in remission.  Started AP and LDN in April 2010.  I also

take

>

> probiotics, tumeric, Zyflamend, krill oil.  I am seeing only a slight

> improvement in my feet/ankles and am now experiencing more involvement in my

> knees, toes, and wrists/hands. 

>

>

> I started with doxy (200mg MWF) and LDN (4.5 mn/day) in April 2010.  When

>things

>

> seemed to be moving too slowly, I switched to minocycline (200 mg MWF) in

Dec

> 2010 for about a month.  RA Pain then started to really affect my knees

which

> were never a problem before.  Because pain increased so much, I went back

to

> doxy (200 mg MWF) but the knee pain/stiffness still persists, as does ankle

and

>

> wrist/hands problems.  Just this week I decided to go back to minocycline

>100mg

>

> MWF to see how that goes.  I am still taking 4.5 LDN at night. I am hopeful

> things with work out.  I've tried to go gluten/dairy free but I found that

>diet

>

> regime to be too limiting.  I'm still losing weight (down from 110 lb to

89

>lbs)

>

> so I try to eat whatever moves me at the moment.  My appetite really is not

>that

>

> good. I do try limit my gluten and dairy, however. 

>

> Diane

>

>

>