23 years!!

[Guest guest]

Hi ...

I have had Lupus since 74 and sero-negative RA since 91. The RA came on

following a terrible infection I had in my lower leg caused by chiggar bites.

The reason for the infection I feel, was probably a result of impaired

circulation in my legs....(I have phlebitis also). The doctor that treated

me for the infection in my leg remarked about some strange " critters " that he

could not identify that he found in the infection site and now, of course,

I'm thinking mycoplasmas!!!

You have been on the AP now for almost 2 1/2 years so my questions to you

are: Do you feel strongly that the AP is helping you? Are your blood tests

showing improvement? Are you still on Clindy IV's and how often if so? If

you have had any disfigurement, particularly in your hands, has that improved

at all since you began the AP? I would ask all you other long timers on the

AP the same questions, and thanks in advance for any responses.

Steve

[Guest guest]

Hi Steve and group: I also very interested to the answers to his questions

so would appreciate it if the replies can be " replies to all " if possible.

Thanks. P

rheumatic 23 years!!

> Hi ...

> I have had Lupus since 74 and sero-negative RA since 91. The RA came on

> following a terrible infection I had in my lower leg caused by chiggar

bites.

> The reason for the infection I feel, was probably a result of impaired

> circulation in my legs....(I have phlebitis also). The doctor that

treated

> me for the infection in my leg remarked about some strange " critters " that

he

> could not identify that he found in the infection site and now, of course,

> I'm thinking mycoplasmas!!!

>

> You have been on the AP now for almost 2 1/2 years so my questions to you

> are: Do you feel strongly that the AP is helping you? Are your blood

tests

> showing improvement? Are you still on Clindy IV's and how often if so?

If

> you have had any disfigurement, particularly in your hands, has that

improved

> at all since you began the AP? I would ask all you other long timers on

the

> AP the same questions, and thanks in advance for any responses.

>

> Steve

>

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[Guest guest]

..

Thank-you very much for your response. I know that not everybody is a

complete success story and I was hoping to hear some of them too. I know

that this treatment is not " the cure " for everybody as I have met others who

have tried it and given up but I think the herx reaction may have been the

reason they stopped and also the fact that they did not give it enough time.

My biggest concern has been because of some of my other complications. I

have phlebitis also and am treated with anticoagulants for that. It has

taken me years to get where the drug interactions have been managable and my

fears have been related to upsetting the delicate balance that has taken me

so long to establish. Hopefully, the new doctor ( ) will be able

to maneuver through the complexities of my disease without serious mishap. I

don't want to experience another pulmonary embolism (3 is quite enough thank

you) and the other end of the spectrum (uncontrollable hematoma) is another

unpleasant animal that I hope to avoid.

I hope you have continued success with your treatment.

Steve

[Guest guest]

Steve, here are my answers to your questions. Again, I apologize for taking

so long to respond, but I have been experiencing neck problems and am

waiting for x-ray results to find out if there have been more changes since

the AP.

> You have been on the AP now for almost 2 1/2 years so my questions to you

> are: Do you feel strongly that the AP is helping you?

Yes, I do. I have felt better than I have in years due to the AP. My first

5 months, however, were my worst ever due to the herx I had. My energy

levels are generally good, my pain is way down, and I haven't had morning

stiffness for 1-2 years.

>Are your blood tests showing improvement?

After I started to improve, my SED rate showed a lot of improvement and

seemed to be down around 25-30 (I know supplements helped here too) after

averaging about 55 for 19 years. My best SED rate ever was 2 last August!

Around Christmas, my SED rate went up to 66 and I'm not sure why. I felt

tired, but I didn't really have any more arthritis symptoms. It has since

come down to 38. My hemoglobin remains below the normal range, but I was

able to stop iron pills which I had been on for 19 years with no further

loss.

>Are you still on Clindy IV's and how often if so?

I had to work on 2 doctors for 8 months before I could get one 5 day series

followed by 5 weekly IV's in July 98. That fall and the following spring, I

had two more IV's due to surgeries. My GP is willing to repeat the IV's,

but because my veins are fragile, he decided to prescribe a few months of

Zithromax in January of this year. I have several weeks left on that.

..> If you have had any disfigurement, particularly in your hands, has that

improved

> at all since you began the AP?

Almost every joint in my body has been affected; I also have a triple fusion

of the subtalor joint in one ankle, toe work, one hip and two knee

replacements. My hands have major changes, including a rare decrease in the

length of some fingers. Joint damage does not reverse with antibiotics.

The hope is to control the disease process and prevent more damage.

I don't think you'll regret your decision to try the AP. I understand you

may have to choose your antibiotic according to your lupus, but others can

advise you better on that. I was on gold injections for 11 years and that

stopped working; I was on methotrexate for 7 years during which time the

major joint damage became visible and severe and during which time I felt

sick from the drug for 3 days every week. Methotrexate also stopped

having any effect as roven by the fact that there was no difference whenI

just stopped it. In my case, I still feel the jury is out on the longterm

results with the AP, but I continue to be hopeful and to be able to feel

better.

All the best with your treatment.

(RA 23+ years, AP since Nov. 97)

[Guest guest]

Well, Steve, you must remember that some of the people in Dr. Brown's

book took two and 1/2 years to turn around. One lady couldn't even get

out of bed to be with her children and then she got ok. I think that, if

you find the right antibiotics at the right dosage, you will improve no

matter who you are. I have seen it too many times.

Afterall, it took me from not being able to walk to the bathroom to

riding my bike twenty miles a day.

People quit when it herxes because they already have so much pain. Also,

people quit when it gives them a frightening headache or dizziness at

first. I had that and I kept taking it and in a few weeks (of brain

tumor head problems, it seemed...I thought I would have a stroke), the

pain and dizziness went away. I never had a herx

(the headaches and dizziness are a common beginning side affect that

almost always goes away according to my pharmacist).

I know you have a lot of other fragile problems like the erupting and

the phlebitis to worry about, but I don't see how an antibiotic could

hurt that. Have you had problems with antibiotics before? Minocycline

and Doxy are very mild ones, used for millions of kids for acne. I have

a friend on cuminin (spelling) for a heart valve replacement, and I know

it is a fragile balance. do you have a way to test your blood at home?

I heard she is getting a machine to do that so she won't have to go in

several times a week. She has a very hard time maintaining the proper

balance and levels in her blood. I don't blame you for being scared. I

will pray for you, and that your doctor will know what to do. You have

something to protect your heart from a clot situation, don't you?

Keep on playing those blues for us,

love,

gloria

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[Guest guest]

In a message dated 4/15/00 2:58:09 PM Central Daylight Time,

missgloria@... writes:

> You have

> something to protect your heart from a clot situation, don't you?

> Keep on playing those blues for us,

Yes Gloria...I have a Greenfield filter in my vena cava that will catch

anything larger than my heart valves could handle and I have not had a

pulmonary emboli problem since that was installed. Thanks for the info on

the device for PT (prothrombin time) testing. I will look into that . I

would defianately feel much safer if I could monitor closely myself. Also,

I will start trying some hand exercises to see if I can't get better

dexterity and hopefully straighten them out a little. Have you and I talked

about my music career? I'm sorry if I have forgotton but I seem to do that

more and more these days...maybe I should do some exercises for that too huh?

: ) Thanks for everything Gloria...you are just full of good ideas and i am

so much appreciating the support from you and all of the group. I should

have been here long ago.

love,

Steve

[Guest guest]

Some RA (if that's what we're discussing here) is caused by allergies to the

nightshade family----potatoes, tomatoes, peppers. Maybe those folks don't

respond to antibiotics?

M

[Guest guest]

Gloria,

I find it interesting that you never had a herx. I've been wondering about

that, since it seems like most of the folks on this board talk about their

herxes and so far, I don't seem to be having one. I've been on Minocin 200mg

3x a week since early March and just had a series of 5 Clindamycin IVs a week

ago. I started feeling some mild increase in pain on the day of the last IV,

but nothing really remarkable. I thought I was starting to herx then it just

went away (so to speak: I am on 7.5 mg of predisone and 1 celebrex per day.

If I cut back on the prednisone, I am in serious pain). Yesterday, my middle

finger of my right hand was much more swollen ( one of my key indicators) and

I have mildly more pain, but this could just be the normal progression?

Anyhow, it was worrying me because, even though I know that 20% of patients

don't ever herx, I am wondering: do the folks who do herx get better faster?

Of the people for whom AP fails, how many of them don't herx. I almost wish

I would herx because then I would know something was happening?

But I am glad to hear that you've been successful without herxing (although

wouldn't the headaches count?)

Regards,

Gloria M Tate wrote:

> Well, Steve, you must remember that some of the people in Dr. Brown's

> book took two and 1/2 years to turn around. One lady couldn't even get

> out of bed to be with her children and then she got ok. I think that, if

> you find the right antibiotics at the right dosage, you will improve no

> matter who you are. I have seen it too many times.

> Afterall, it took me from not being able to walk to the bathroom to

> riding my bike twenty miles a day.

> People quit when it herxes because they already have so much pain. Also,

> people quit when it gives them a frightening headache or dizziness at

> first. I had that and I kept taking it and in a few weeks (of brain

> tumor head problems, it seemed...I thought I would have a stroke), the

> pain and dizziness went away. I never had a herx

> (the headaches and dizziness are a common beginning side affect that

> almost always goes away according to my pharmacist).

> I know you have a lot of other fragile problems like the erupting and

> the phlebitis to worry about, but I don't see how an antibiotic could

> hurt that. Have you had problems with antibiotics before? Minocycline

> and Doxy are very mild ones, used for millions of kids for acne. I have

> a friend on cuminin (spelling) for a heart valve replacement, and I know

> it is a fragile balance. do you have a way to test your blood at home?

> I heard she is getting a machine to do that so she won't have to go in

> several times a week. She has a very hard time maintaining the proper

> balance and levels in her blood. I don't blame you for being scared. I

> will pray for you, and that your doctor will know what to do. You have

> something to protect your heart from a clot situation, don't you?

> Keep on playing those blues for us,

> love,

> gloria

> ________________________________________________________________

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[Guest guest]

>

> Gloria,

>

> I find it interesting that you never had a herx. I've been

wondering

Ive talked about this with Anita and Mark. Both of them didnt feel

the

AP was doing much for them altho they still are sticking with it.

Neither of them ever had anything they would think of as a herx and

also interestingly neither of them has the fevers or fatigue that

most

of us have. I sorta wonder if there arent other different viral

things

causing these diseases.

As far as the computer hookup to you and the supplements, it sounds

like a bunch of hooey to me. I would need definate proof that it

worked to believe it.

[Guest guest]

In a message dated 4/16/00 3:08:48 PM Central Daylight Time,

missgloria@... writes:

> Hi Steve,

> Let me know what happens when you stretch your hand and push back on it.

> Do it all the time, not once a day.

> Keep me posted on everything through the list or otherwise.

> What kind of work does your wife do? You said she isn't always happy

> being the breadwinner, but some people have actually had their marriages

> break up over these diseases. One woman went to the hospital really

> sick, and her husband thought she would die in there. He gave away all

> of her clothes and things. Do you have disability through social

> security?

> gloria

HI Gloria

I have not gone through the hoops of setting up disability yet. We have

rather good insurance through her employer (American Airlines) and I have

felt that I didn't want to use the disability until I had to. Maybe it would

have been a better idea if I had started that way back as maybe then she

would feel that I was contributing (financially) to the partnership. It

seems rediculous to me that financial considerations would have anything to

do with the " meat " of a relationship

but it sure does seem to. Maybe I am just having a nieve and romantic

delusion.

Whatever, I suppose I should certainly set up disability and probably set up

my VA medical also. Who knows, when and if she decides to unload me, it

would probably happen in a hurry (women have short time frames : )...she

keeps telling me that as she compares hers to mine. I have family so if

that ever happened, I could stay with one of them till I got myself set up.

Kind of unnerving though...living under the dark cloud of

uncertainty...probably does nothing at all to assist in the healing process.

On the hand flex thing you mentioned.....do you mean to flex the hand or

allow it to bend from the wrist? I can tell you that it is somewhat stiff

either way....I don't think I could walk on my hands and knees but then I'm

not going to let her push me that far...lol

Steve

[Guest guest]

wrote:

> I find it interesting that you never had a herx. I've been wondering about

> that, since it seems like most of the folks on this board talk about their

> herxes and so far, I don't seem to be having one

I never herxed, just slowly improved over 3 years time. I suspect that many

of the people who fail on antibiotics are actually herxing and quit before

they get started because of it. Anyone else feel this way?

a Carnes

[Guest guest]

-actually herxing and quit

before

> they get started because of it. Anyone else feel this way?

> a Carnes

Yes I think it is definate possibility and probably happens. Id had

arthritis a long time and definately didnt want to go on the big guns

as recommended so I had the patience with AP, in my mind not feeling

I

had any other choice.

[Guest guest]

,

I have never had a herx either and I've been on Minocin since Oct./98. I

also am wondering if AP is working for me because I have more joints

involved. When I was first diagnosed it was the feet and wrists. My

wrists seem stronger and I've lost the numbness in the feet in the morning

but traded it for really stiff feet, sore neck, knees and hands. I must

admit it is worse in the morning when I get up and throughout the day it

sort of works itself out. If I drive more than ten or fifteen minutes I gel

and have a time getting out of the car. But then again, I have good days

and bad. To look at me you would never know I had RA because my hands are

straight and once I get ungelled I walk fine. Teraza floors are terrible

for me though, even with my New Balance walking shoes.

Bev

> >

> > Gloria,

> >

> > I find it interesting that you never had a herx. I've been

> wondering

>

> Ive talked about this with Anita and Mark. Both of them didnt feel

> the

> AP was doing much for them altho they still are sticking with it.

> Neither of them ever had anything they would think of as a herx and

> also interestingly neither of them has the fevers or fatigue that

> most

> of us have. I sorta wonder if there arent other different viral

> things

> causing these diseases.

>

> As far as the computer hookup to you and the supplements, it sounds

> like a bunch of hooey to me. I would need definate proof that it

> worked to believe it.

>

>

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

> Whatever you want, chances are you'll find it at one of the hundreds

> of sites in The PointClick Network--like Disney.com, eCost.com,

> FogDog.com and many more. You get paid as you shop and an additional

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>

[Guest guest]

Re: rheumatic Re: 23 years!!

> Some RA (if that's what we're discussing here) is caused by allergies to the > nightshade family----potatoes, tomatoes, peppers. Maybe those folks don't > respond to antibiotics?> M

I don't think this statement is exactly correct. RA is not caused by allergies to nightshades........nightshades may aggrivate pre-existing symptoms in some. (By the way, in the book "Arthritis: What Works........" it's stated that only 5% of people with arthritis is affected by nightshades.)

Be well,

[Guest guest]

: Re: hyperpigmentation you said your drs. did not want you on the

minocycline because of this. I thought I read that the hyperpigmentation was

a " benign " side effect. Was I wrong and/or what exactly was the real problem

your drs. saw in this hyperpigmentation, requiring you to switch to doxy?

Thanks!

Babs

RA 8/98, DX 4/99, AP 11/99

200 mg. Minocin

112 mcg. Synthroid

2 mg. Hytrin

10 mg. Lipitor

Mestinon

Vits. & Misc. Suplmts.

[Guest guest]

The only herx I had on the minocin was with my lungs. I did great on the

minocin for about four months and then started to slip. Then I got the blue

marks and decided to switch ( plus my doctors did not want me on it with

the hyperpigmentation) . The doxi gave me a horrific two year herx but I

seem to be holding a lot better on it and not slipping as I did on the mino.

At 04:18 PM 4/16/00 -0400, you wrote:

>,

>I have never had a herx either and I've been on Minocin since Oct./98. I

>also am wondering if AP is working for me because I have more joints

>involved. When I was first diagnosed it was the feet and wrists. My

>wrists seem stronger and I've lost the numbness in the feet in the morning

>but traded it for really stiff feet, sore neck, knees and hands. I must

>admit it is worse in the morning when I get up and throughout the day it

>sort of works itself out. If I drive more than ten or fifteen minutes I gel

>and have a time getting out of the car. But then again, I have good days

>and bad. To look at me you would never know I had RA because my hands are

>straight and once I get ungelled I walk fine. Teraza floors are terrible

>for me though, even with my New Balance walking shoes.

>

>Bev

>

>

>

>

>> >

>> > Gloria,

>> >

>> > I find it interesting that you never had a herx. I've been

>> wondering

>>

>> Ive talked about this with Anita and Mark. Both of them didnt feel

>> the

>> AP was doing much for them altho they still are sticking with it.

>> Neither of them ever had anything they would think of as a herx and

>> also interestingly neither of them has the fevers or fatigue that

>> most

>> of us have. I sorta wonder if there arent other different viral

>> things

>> causing these diseases.

>>

>> As far as the computer hookup to you and the supplements, it sounds

>> like a bunch of hooey to me. I would need definate proof that it

>> worked to believe it.

>>

>>

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

>> Whatever you want, chances are you'll find it at one of the hundreds

>> of sites in The PointClick Network--like Disney.com, eCost.com,

>> FogDog.com and many more. You get paid as you shop and an additional

>> 10% off any purchase, anytime.

>> 1/2994/0/_/532797/_/955904037/

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

>>

>>

>

>

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[Guest guest]

----- Original Message -----

From: "Briarwood" <briarwood@...>

> said........."I must admit it is worse in the morning when I get up and throughout the day it sort of works itself out."

Hi ........a very distinctive difference between osteoarthritis and rheumatoid arthritis is with OA you feel half decent upon getting up, and pain and stiffness sets in as the day progresses. With RA, you wake up stiff and sore, and this lessens as you move around and loosen up. In theory, anyway!

Be well,

[Guest guest]

About 20% of people don't experience herxheimer reactions. Scleroderma patients

get it less than RA patients. And yes, there are multiple infections present

in many patients, all of which need dealing with.

Chris.

>

>>

>> Gloria,

>>

>> I find it interesting that you never had a herx. I've been

>wondering

>

>Ive talked about this with Anita and Mark. Both of them didnt feel

>the

>AP was doing much for them altho they still are sticking with it.

>Neither of them ever had anything they would think of as a herx and

>also interestingly neither of them has the fevers or fatigue that

>most

>of us have. I sorta wonder if there arent other different viral

>things

>causing these diseases.