Newbie with some questions

[Guest guest]

Hi Michele,

You did not say how you have been since your first flare in May. If the

elbow pain was new or not.

I also have hominis. I have been on antibiotics for 11 years. I did not see

improvement (I was on Minocin 200mgm MWF for I think 7 months) till I did

IV's but I feel my case was already past the initiation stage when I started

so I needed the Clindamycin IV's. With the IV's my improvement was within a

week and it was gradual after that.

Starting low is good. Pulsing is good. I wish I had done that. Sounds like

your doc is very willing to work with you. If you need advice about IV's at

a later date do not hesitate to ask me.

I'm sorry I can't give any advice about testing or increasing since I

started out with a bang.

Best of luck and keep reading this site and let us know what is going on.

You might also want to look up Hominis and read about it.

Hugs,

Cooky

: rheumatic Newbie with some questions

Quick background: I'm 44, and I had my first RA flare in May of this year. I

was tested via

TARCI (The Arthritis Research Center) in June and came up positive for M.

hominis.

My MD started me on 50 mg Doxy, on MWF, the beginning of July. From my

reading, we

decided to start low and pulsing.

I'm taking probiotics daily, making sure I'm not taking anything that would

interfere with

the antibiotics (calcium, etc.), and I'm taking Wobenzym (3 tablets, twice

daily) for

inflammation.

Since beginning the antibiotics earlier this month, I've had some days with

little pain and

I've had some bad ones where my elbows were very, very sore.

My understanding is that improvement is gradual. What I don't understand is

how one

determines if and when the antibiotic dose should be increased, and how do

you know it's

working?

Our plan is to periodically retest via TARCI, to see if the mycoplasma

infection is clearing.

_

[Guest guest]

Lucky for you to have discovered TARCT first.  Just keep on taking the

antibiotic as prescribed and believe me you will know when it is working.  And

then one day, you will get a surprised.  Quite by accident you will discover

that you can do something you never thought you could.. It may be transient at

first, but you will be using those muscles you never could use before and you

will suddenly notice that it doesn't hurt as much any more.   Your doc will tell

you if you have to increase or decrease and when.  Take care.  Watch the posts

and also check out the Roadback. org. site.   Good luck to you,  Dolores

From: mmc2315 <m.chelap@...>

Subject: rheumatic Newbie with some questions

rheumatic

Date: Thursday, July 24, 2008, 11:15 AM

Quick background: I'm 44, and I had my first RA flare in May of this year. I was

tested via

TARCI (The Arthritis Research Center) in June and came up positive for M.

hominis.

My MD started me on 50 mg Doxy, on MWF, the beginning of July. From my reading,

we

decided to start low and pulsing.

I'm taking probiotics daily, making sure I'm not taking anything that would

interfere with

the antibiotics (calcium, etc.), and I'm taking Wobenzym (3 tablets, twice

daily) for

inflammation.

Since beginning the antibiotics earlier this month, I've had some days with

little pain and

I've had some bad ones where my elbows were very, very sore.

My understanding is that improvement is gradual. What I don't understand is how

one

determines if and when the antibiotic dose should be increased, and how do you

know it's

working?

Our plan is to periodically retest via TARCI, to see if the mycoplasma infection

is clearing.

[Guest guest]

Cooky wrote:

> You did not say how you have been since your first flare in May. If the

> elbow pain was new or not.

No, the elbow pain is not new. Since starting Doxy at the beginning of July,

the amount of

pain and discomfort I feel varies quite a bit. My elbows seem the worst,

although

sometimes it's my feet, my ankles, my hands, my knees..

There have been some days in there that my elbows have felt quite good.

I'll take the pain as a good sign (Herx)?

Cooky wrote:

> Starting low is good. Pulsing is good. I wish I had done that. Sounds like

> your doc is very willing to work with you. If you need advice about IV's at

> a later date do not hesitate to ask me.

Thank you,

[Guest guest]

Dolores wrote:

> Lucky for you to have discovered TARCT first.  Just keep on taking the

antibiotic as

prescribed and believe me you will know when it is working.  And then one day,

you will get

a surprised.  Quite by accident you will discover that you can do something you

never

thought you could.. It may be transient at first, but you will be using those

muscles you

never could use before and you will suddenly notice that it doesn't hurt as much

any more.  

Your doc will tell you if you have to increase or decrease and when.  Take

care.  Watch the

posts and also check out the Roadback. org. site.   Good luck to you,  Dolores

Thanks Dolores. I'll have to keep that in mind that progress is not linear. 3

steps forward

and 2 steps back, etc. I think I'm worrying too much.

[Guest guest]

If the pain is not new then it is not a herx. BUT if the pain in the area

gets worse then it probably is. If the herx in one place lasts too long

(months) then you should drop back on the amount you take. Wait a while till

the pain lessens and evaluate how much to go back on.

The days your elbows felt good IS a good sign.

cooky

No, the elbow pain is not new. Since starting Doxy at the beginning of July,

the amount of

pain and discomfort I feel varies quite a bit. My elbows seem the worst,

although

sometimes it's my feet, my ankles, my hands, my knees..

There have been some days in there that my elbows have felt quite good.

I'll take the pain as a good sign (Herx)?

[Guest guest]

You're welcome and remember, we are all different and respond differently.  Some

of us have higher thresholds and some of us need more healing time.  Patience is

a virtue, they say.  With these diseases, it is essential...  Stick with it,

persevere and look at the cup as half full instead of half empty.  I revel when

I hear that progress is being made.  My blessings to you.  Dolores & Mike

> Lucky for you to have discovered TARCT first.  Just keep on taking the

antibiotic as

prescribed and believe me you will know when it is working.  And then one day,

you will get

a surprised.  Quite by accident you will discover that you can do something you

never

thought you could.. It may be transient at first, but you will be using those

muscles you

never could use before and you will suddenly notice that it doesn't hurt as much

any more.  

Your doc will tell you if you have to increase or decrease and when.  Take

care.  Watch the

posts and also check out the Roadback. org. site.   Good luck to you,  Dolores

Thanks Dolores. I'll have to keep that in mind that progress is not linear. 3

steps forward

and 2 steps back, etc. I think I'm worrying too much.

[Guest guest]

Hi just really quick as I have to jump -the ProEFA Jr or the

Omega 369 Jr is an exact half dosage of the regular. One capsule of

ProEFA (or Omega 369) is about equivalent to what the FDA approved

for infant formula so extremely conservative. What I have shared

with this group for years is either the Omega 3/6 oil formulas

ProEFA, Efalex or Eye Q -or if you want what most of us find to be a

better formula you have to raise the EPA up -but not to high.

Since you are using the Jr. of the product you would have to use 4 of

them to equal 2 capsules or you are using a 1/1 ratio which has not

been as successful a formula for most of us. Your options are to

either continue with the 2 Omega 369 Jr. and just squeeze out a 1/2

capsule of the ProEPA (put the rest in a baggie in the fridge) or

increase up to 4 of the Jr. to 1 of the ProEPA. (as again 4 Jr is =

to 2 ProEFA or 2 Omega 369)

If you give the coromega with the other oils you are once again

changing the formula and raising the EPA and DHA. Coromega is a good

product -but here we found it best to use one or the other. More is

not always better.

=====

[Guest guest]

Thank you , So, If I am reading this correctly.. (its still

early) I should give him 4 of the omega 3-6-9 JR. and only 1/2 of the

EPA.. The EPA I have is NOT the Jr. strength. (I couldn't find it

locally) so would it be best to only give him 1/2 of the regular EPA?

or am I really confused. would you suggest it best to find the PRO

version (I was told this was only sold to doctors by nordic naturals)

>

> Hi just really quick as I have to jump -the ProEFA Jr or the

> Omega 369 Jr is an exact half dosage of the regular. One capsule

of

> ProEFA (or Omega 369) is about equivalent to what the FDA approved

> for infant formula so extremely conservative. What I have shared

> with this group for years is either the Omega 3/6 oil formulas

> ProEFA, Efalex or Eye Q -or if you want what most of us find to be

a

> better formula you have to raise the EPA up -but not to high.

>

> Since you are using the Jr. of the product you would have to use 4

of

> them to equal 2 capsules or you are using a 1/1 ratio which has not

> been as successful a formula for most of us. Your options are to

> either continue with the 2 Omega 369 Jr. and just squeeze out a 1/2

> capsule of the ProEPA (put the rest in a baggie in the fridge) or

> increase up to 4 of the Jr. to 1 of the ProEPA. (as again 4 Jr is

=

> to 2 ProEFA or 2 Omega 369)

>

> If you give the coromega with the other oils you are once again

> changing the formula and raising the EPA and DHA. Coromega is a

good

> product -but here we found it best to use one or the other. More

is

> not always better.

>

> =====

>

[Guest guest]

Hello all,

I have been lurking for a little while and you all seem to be very

knowledgable so I want to introduce myself and ask some questions.

I have not been formally diagnosed with RA but I suspect I may have

it. A few months ago I had a physical and brought up my aching ankles

and extreme fatigue. My dr did blood work and we found out I am pretty

severly anemic. She told me to take iron and repeat labs in a

month. The anemia is improving.

She also did a rheumatic factor and said it was slightly positive.

She did not give me the actual number. She also was not sure if the

anemia could be causing the positive rheumatoid factor.

My first question is...If I had a positive rheumatoid factor test,

does that mean I have RA? I have read several places that you do not

need to have a positive RF to have RA, but I can't find out if you

have a positive RF then do you definatley have RA.

My other question involves the achiness and pain. I have read that

it usually will show up on both sides of the body. For example both

hands, both knees. Is this always true? I seem to have more pains in

my one knee and the opposite shoulder. I was hoping this doesn't mean

that I will eventually have these pains in my other knee and

shoulder. I do have pains in both ankles, especially in the

morning or after sitting for a while. The more I read about RA the

more I suspect it might be what is causing my pain. I have had on

and off pain for several years in different parts of my body that I

thought was just normal.

Thanks in advance for any information you can give.

Lori

[Guest guest]

Hi, Lori. Welcome to the group.

Rheumatoid factor (RF) is not specific to RA. If you have a positive

RF, especially borderline, you don't necessarily have RA.

In people with RA, usually both sides of the body are affected. In

very early RA, this might not be true.

If you think it's possible that you have RA, go see a rheumatologist

as soon as you can.

Not an MD

On Sun, Nov 2, 2008 at 9:30 PM, loriandheidi <loriandheidi@...> wrote:

> Hello all,

> I have been lurking for a little while and you all seem to be very

> knowledgable so I want to introduce myself and ask some questions.

> I have not been formally diagnosed with RA but I suspect I may have

> it. A few months ago I had a physical and brought up my aching ankles

> and extreme fatigue. My dr did blood work and we found out I am pretty

> severly anemic. She told me to take iron and repeat labs in a

> month. The anemia is improving.

> She also did a rheumatic factor and said it was slightly positive.

> She did not give me the actual number. She also was not sure if the

> anemia could be causing the positive rheumatoid factor.

> My first question is...If I had a positive rheumatoid factor test,

> does that mean I have RA? I have read several places that you do not

> need to have a positive RF to have RA, but I can't find out if you

> have a positive RF then do you definatley have RA.

> My other question involves the achiness and pain. I have read that

> it usually will show up on both sides of the body. For example both

> hands, both knees. Is this always true? I seem to have more pains in

> my one knee and the opposite shoulder. I was hoping this doesn't mean

> that I will eventually have these pains in my other knee and

> shoulder. I do have pains in both ankles, especially in the

> morning or after sitting for a while. The more I read about RA the

> more I suspect it might be what is causing my pain. I have had on

> and off pain for several years in different parts of my body that I

> thought was just normal.

>

> Thanks in advance for any information you can give.

>

> Lori

[Guest guest]

Hi Lori:

Welcome to our wonderful, caring, group of people.

If you think you might have RA, I would call your Rheumy as soon as

possible. It is imperative to start on the right meds. right from the

beginning.

Wishing you good luck, and hoping you have pain free days and nights.

Hugs,

Barbara

> > Hello all,

> > I have been lurking for a little while and you all seem to be very

> > knowledgable so I want to introduce myself and ask some questions.

> > I have not been formally diagnosed with RA but I suspect I may have

> > it. A few months ago I had a physical and brought up my aching

ankles

> > and extreme fatigue. My dr did blood work and we found out I am

pretty

> > severly anemic. She told me to take iron and repeat labs in a

> > month. The anemia is improving.

> > She also did a rheumatic factor and said it was slightly positive.

> > She did not give me the actual number. She also was not sure if the

> > anemia could be causing the positive rheumatoid factor.

> > My first question is...If I had a positive rheumatoid factor test,

> > does that mean I have RA? I have read several places that you do not

> > need to have a positive RF to have RA, but I can't find out if you

> > have a positive RF then do you definatley have RA.

> > My other question involves the achiness and pain. I have read that

> > it usually will show up on both sides of the body. For example both

> > hands, both knees. Is this always true? I seem to have more pains in

> > my one knee and the opposite shoulder. I was hoping this doesn't

mean

> > that I will eventually have these pains in my other knee and

> > shoulder. I do have pains in both ankles, especially in the

> > morning or after sitting for a while. The more I read about RA the

> > more I suspect it might be what is causing my pain. I have had on

> > and off pain for several years in different parts of my body that I

> > thought was just normal.

> >

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

> >

> > Lori

>

[Guest guest]

Hi Lori and welcome to the group. I would recommend that you ask for a

referral to a Rheumatologist right away. From all you've said, I would

lean towards a positive RA diagnosis, but a Rheumatologist can get you

on the proper regimen of meds to keep the RA in check.

You may also be referred you to a Hematologist if the anemia is not

under control. Get a copy of all tests you have had done and keep a

folder or binder for yourself with copies to any doctor referred to.

I've found that the info I have kept for myself has sped up a lot of

processes that could otherwise be delayed by waiting for another

doctor to send the copies around. Best of luck to you. Keep us

posted..........Doreen

--- In , " loriandheidi " <loriandheidi@...>

wrote:

>

> Hello all,

> I have been lurking for a little while and you all seem to be very

> knowledgable so I want to introduce myself and ask some questions.

> I have not been formally diagnosed with RA but I suspect I may

> have it. A few months ago I had a physical and brought up my aching

> ankles and extreme fatigue. My dr did blood work and we found out I

> am pretty severly anemic. She told me to take iron and repeat labs

> in a month. The anemia is improving.

> She also did a rheumatic factor and said it was slightly

> positive. She did not give me the actual number. She also was not

> sure if the anemia could be causing the positive rheumatoid

> factor.

> My first question is...If I had a positive rheumatoid factor test,

> does that mean I have RA? I have read several places that you do

> not need to have a positive RF to have RA, but I can't find out if

> you have a positive RF then do you definatley have RA.

> My other question involves the achiness and pain. I have read

> that it usually will show up on both sides of the body. For example

> both hands, both knees. Is this always true? I seem to have more

> pains in my one knee and the opposite shoulder. I was hoping this

> doesn't mean that I will eventually have these pains in my other

> knee and shoulder. I do have pains in both ankles, especially in the

> morning or after sitting for a while. The more I read about RA the

> more I suspect it might be what is causing my pain. I have had on

> and off pain for several years in different parts of my body that I

> thought was just normal.

>

> Thanks in advance for any information you can give.

>

> Lori

>

[Guest guest]

This was the case with me. It didn't look like RA at first because

it wasn't symmetrical, but as it " settled in " to all my joints, it

did become more or less symmetrical. Flares rarely are symmetrical

for me though. I've mostly hurt " lightly " (relatively speaking)

everywhere and get asymmetric flares now and again.

>

> Hi, Lori. Welcome to the group.

>

> Rheumatoid factor (RF) is not specific to RA. If you have a positive

> RF, especially borderline, you don't necessarily have RA.

>

> In people with RA, usually both sides of the body are affected. In

> very early RA, this might not be true.

>

> If you think it's possible that you have RA, go see a rheumatologist

> as soon as you can.

>

>

>

> Not an MD

>

>

>

> On Sun, Nov 2, 2008 at 9:30 PM, loriandheidi <loriandheidi@...>

wrote:

> > Hello all,

> > I have been lurking for a little while and you all seem to be very

> > knowledgable so I want to introduce myself and ask some questions.

> > I have not been formally diagnosed with RA but I suspect I may

have

> > it. A few months ago I had a physical and brought up my aching

ankles

> > and extreme fatigue. My dr did blood work and we found out I am

pretty

> > severly anemic. She told me to take iron and repeat labs in a

> > month. The anemia is improving.

> > She also did a rheumatic factor and said it was slightly positive.

> > She did not give me the actual number. She also was not sure if

the

> > anemia could be causing the positive rheumatoid factor.

> > My first question is...If I had a positive rheumatoid factor test,

> > does that mean I have RA? I have read several places that you do

not

> > need to have a positive RF to have RA, but I can't find out if you

> > have a positive RF then do you definatley have RA.

> > My other question involves the achiness and pain. I have read that

> > it usually will show up on both sides of the body. For example

both

> > hands, both knees. Is this always true? I seem to have more pains

in

> > my one knee and the opposite shoulder. I was hoping this doesn't

mean

> > that I will eventually have these pains in my other knee and

> > shoulder. I do have pains in both ankles, especially in the

> > morning or after sitting for a while. The more I read about RA the

> > more I suspect it might be what is causing my pain. I have had on

> > and off pain for several years in different parts of my body that

I

> > thought was just normal.

> >

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

> >

> > Lori

>

[Guest guest]

When my RA first started, it didn't show up on both sides of my body.

It was also migratory: one joint would hurt for a while, then it would

jump to another joint. It starts off differently in different people.

Sue

On Sunday, November 2, 2008, at 10:30 PM, loriandheidi wrote:

>

> My other question involves the achiness and pain. I have read that

> it usually will show up on both sides of the body. For example both

> hands, both knees. Is this always true? I seem to have more pains in

> my one knee and the opposite shoulder. I was hoping this doesn't mean

> that I will eventually have these pains in my other knee and

> shoulder. I do have pains in both ankles, especially in the

> morning or after sitting for a while.

[Guest guest]

Thats what I seem to be going through. The pains seem to be moving

all over. Lately my ankles seem to be pretty good, but my elbow and

knee are acting up.

Thanks,

Lori

> >

> > My other question involves the achiness and pain. I have read

that

> > it usually will show up on both sides of the body. For example

both

> > hands, both knees. Is this always true? I seem to have more pains

in

> > my one knee and the opposite shoulder. I was hoping this doesn't

mean

> > that I will eventually have these pains in my other knee and

> > shoulder. I do have pains in both ankles, especially in the

> > morning or after sitting for a while.

>