Re: Losing faith in the AP :o(

[Guest guest]

I was wondering for the first 6 months on Minocin. I was doing it on my own

without a AP doctor and really wondered if it was the right thing to do,

which is probably why many others quit early. But I stuck it out with the

help from the RBF www.roadback.org and reading success stories. After 6

months things really started to change for the better.

When I started my Rf was 400 and sed rate was 80, bedridden except for the

bathroom visits which took 30 minutes to get the 20 feet to the bathroom. I

was on pred, vioxx and arava and still couldnt walk, or really do anything

including lifting a fork to my mouth to eat.

Like I said, at 6 months things started changing, at 8 months i was only on

minocin and advil, 6-800mg. At 1 year i stoped using crutches, installed a

pergo floor in the kitchen. At 15 months I built a deck all by myself and was

able to bench press 150 pounds with wrists and shoulders that couldnt lift

themselves when I started. Last weekend I cut up a tree with the chainsaw and

except for my crappy knees couldnt tell I had ra at all.

BTW, blood test 2 weeks ago? My RF is now 36 and my sed rate is 2. I take

nothing for RA except Minocin 100mg daily and advil only occasionally for my

knees which need some surgury. I would consider myself in remission. I dont

have lyme, or anything else, I have RA.

Very very important to have support from your doctor. My new doc has RA

himself and used antibiotics for his remission. He also uses things besides

Minocin to boost the process along. Minocin sometimes isnt enough alone.

Sometime another oral or IV antibiotic is needed. You need a good doctor

experienced in this treatment. A rheumotologist probably cant help you much.

If you arent getting doctor support you are doomed for failure.

There are studys showing that 40% of the people who use Minocin for RA for 4

years achieve full remission requiring no other medications for RA. There is

no treatment for RA with that kind of results. Read the Odell studys. There

is no question Minocin and the Antibiotic type of Treatment works.

In your case 5 weeks is just starting, if you quit now you will never know.

All I ask is you dont bad mouth the treatment like a lot who quit do. Tell

people you quit without trying it long enough to see if it works. Go to

www.roadback.org and read about non responders.

Why did you quit Enbrel if it worked so good for you?

On Monday 08 October 2001 14:00, you wrote:

> Hello group, I have a general question for all or whomever has time to

> answer.

> I have now been on the antibiotics 5 weeks as of this Wednesday and have NO

> improvement whatsoever. If anything, my condition has gotten worse. I

> have more nodules on my hands/feet now and the ones I had when I started

> have gotten bigger. I hate to give up on the therapy this early on, but

> also feel that I am risking more permanent damage as a result of all of

> this inflammation. My question is, how long did it take others to notice

> any improvement on this AP therapy? Does anyone in this group actually

> feel that they are in remission, if so, how long did it take you to get

> there? And lastly, maybe I am feeling this way do to dealing with EXTREME

> PAIN on a daily basis, but I am beginning to really DOUBT this therapy

> ( One would think that if antibiotics will put RA into remission or

> even calm it as Scammell's book suggests, why are there so many children

> still suffering and being crippled by JRA (not to mention adults such as

> myself)?

> I guess I am just looking for some encouragement at this point....? I

> requested a slew of blood tests last week to check for Mycoplasmas/strep

> infections etc. I am waiting until they come back to make my decision on

> whether to continue with this therapy.

> This disease was under far better control when I was on Enbrel Injections,

> not that they are the answer either, but at least more damage was not being

> done; damage that can only be reversed by surgery. Right now I am taking

> only 5 mg prednisone and 3-500mg. relafen a day to manage pain, I have

> tried so many of the natural remedies for pain with no results. I am

> beginning to wonder if this treatment is one that works only for

> Lyme/infection types of arthritis? If one has RA without any underlying

> infectious/germ cause maybe this treatment will do nothing? This only

> stands to reason when you consider so many millions suffering with this

> disease, including children with JRA, if they could take a simple

> antibiotic and be in remission in a year or two I would think that is what

> they would be doing. This is where my doubt lies in this therapy. Any

> thoughts would be greatly appreciated, as I am losing faith in this

> treatment FAST...which is quite easy to do when you can barely walk from

> severe pain. I guess you can tell from this email that I had an extremely

> painful evening (hardly any sleep, AGAIN), I am just fed up with feeling

> horrible!

> Thanks in advance for any and all responses.

> Be Well

> Kris

> PS. Yes, I am taking Lederle brand of Minocycline, and am a vegetarian,

> dont drink and dont smoke. (just thought I would answer those questions

> before they are asked)

>

>

> To unsubscribe, email: rheumatic-unsubscribeegroups

>

>

>

[Guest guest]

Kris,

If I'm not mistaken, herxing can cause damage and pain like the arthritis.

Thus, you may need to stay on your previous drugs until the disease is under

control. Then you can start to eliminate meds as tolerated. How

long-standing is your disease? It takes a while to get positive results

unless your disease has appeared in the last year or so.

M.

[Guest guest]

Hello Kris,

My story is on here and my name is also I am 53 now and I was bed-ridden with the worst pain in the world back then, so bad I wanted to die. Really that bad, I felt like Hot Lava was everywhere in my body, and they were very unkind back then 14 yrs ago with pain medicine. I could not get out of bed without help. I had to go on disability. I am FINE now no deformity and just take my doxy and an ocassional aspirn for pain with MSM. Yes it took me almost 3 yrs to be completely well. By the way all my blood tests are perfect now. It didn't happen over nite and there were times I really hurt.but it did happen and Thank God there were people out in the AP world to help me. This line is a BIG help for everyone out here. Just believe other people were there,and are not now. It takes some time but the results are worth it. Most people get better faster than I did,but sometimes it takes longer. My cousin opted for the Methotrexate 5 yrs ago and she was doing ok for awhile, now she is a mess, and doesn't know what to do. Its a personal choice, but I wouldn't trade the AP for anything and this is from one who was there and back. All I can say is have faith and what they say go with the flow. It does work, and at Dr. Browns Institute yrs ago I met people from all over the world there to get this treatment, as it worked for them. I hope this helps and I did feel your Pain. Just My View from Ohio

[Guest guest]

Hi Kris

Don't give up! I was on Tetracycline for a year with no improvement

whatsoever. Changed to Doxy and still didn't see any change at all for at

least 4 months, and it was only very very gradual. Even now at 8 months on

I still get lots of pain some days but things have certainly turned around

for me. I had a night for the first time in about 4 years when I didn't

take an anti-inflammatory at bedtime. (I forgot) I got through the night

though I did take a couple of paracetamol and codein at about 4am. But I

wouldn't even have been able to move or get out of bed without an

anti-inflam. even 4 months ago. Its still very early days. Don't get

down, it will improve. I just kept telling myself it would. You may even

still be herxing badly. I'm sure you'll be bombarded with many more

comments like mine encouraging you not to give up.

Take care

Carol (UK)

PS I've now weaned my mtx to 7.5mg weekly

rheumatic Losing faith in the AP (

>Hello group, I have a general question for all or whomever has time to

>answer.

>I have now been on the antibiotics 5 weeks as of this Wednesday and have NO

>improvement whatsoever. If anything, my condition has gotten worse. I

have

>more nodules on my hands/feet now and the ones I had when I started have

>gotten bigger. I hate to give up on the therapy this early on, but also

feel

>that I am risking more permanent damage as a result of all of this

>inflammation. My question is, how long did it take others to notice any

>improvement on this AP therapy? Does anyone in this group actually feel

that

>they are in remission, if so, how long did it take you to get there? And

>lastly, maybe I am feeling this way do to dealing with EXTREME PAIN on a

>daily basis, but I am beginning to really DOUBT this therapy ( One

>would think that if antibiotics will put RA into remission or even calm it

as

>Scammell's book suggests, why are there so many children still suffering

and

>being crippled by JRA (not to mention adults such as myself)?

>I guess I am just looking for some encouragement at this point....? I

>requested a slew of blood tests last week to check for Mycoplasmas/strep

>infections etc. I am waiting until they come back to make my decision on

>whether to continue with this therapy.

>This disease was under far better control when I was on Enbrel Injections,

>not that they are the answer either, but at least more damage was not being

>done; damage that can only be reversed by surgery. Right now I am taking

>only 5 mg prednisone and 3-500mg. relafen a day to manage pain, I have

tried

>so many of the natural remedies for pain with no results. I am beginning

to

>wonder if this treatment is one that works only for Lyme/infection types of

>arthritis? If one has RA without any underlying infectious/germ cause

maybe

>this treatment will do nothing? This only stands to reason when you

>consider so many millions suffering with this disease, including children

>with JRA, if they could take a simple antibiotic and be in remission in a

>year or two I would think that is what they would be doing. This is where

>my doubt lies in this therapy. Any thoughts would be greatly appreciated,

as

>I am losing faith in this treatment FAST...which is quite easy to do when

you

>can barely walk from severe pain. I guess you can tell from this email

that

>I had an extremely painful evening (hardly any sleep, AGAIN), I am just fed

>up with feeling horrible!

>Thanks in advance for any and all responses.

>Be Well

>Kris

>PS. Yes, I am taking Lederle brand of Minocycline, and am a vegetarian,

dont

>drink and dont smoke. (just thought I would answer those questions before

>they are asked)

>

>

>To unsubscribe, email: rheumatic-unsubscribeegroups

>

>

>

[Guest guest]

Hi Kris,

5 weeks is soon to be looking for any kind of noticeable improvement. From

your post I gather that you have read The New Arthritis Breakthrough and so

you should be aware that things can get alot worse before they get better.

I've been on AP for almost 6 months and improvement has been slow but it is

happening. From what I understand, you should begin to see improvement by 6

months. Maybe your dosage is too high? You didn't mention how much or often

you take the Minocin. Usually if you feel awful it's from a herx and that

means it's working. Are you taking any anti-inflammatories? Keeping

inflammation down helps the Minocin do it's job. Hope this helps.

Be Well,

Dee

[Guest guest]

Hi Kris,

I'm sorry to tell you but 5 weeks is way too short a period of time to

be expecting results. I would, however, take your worsening of symptoms

as a positive sign. What you are likely experiencing is a herx

reaction, which is an indicator that the treatment is working and

starting to kick up some bugs. Unfortunately, that also means suffering

more for a time, which is where the patience part of this treatment

comes in. You cannot expect this to be a " quick fix " and just have to

perservere through the rough patches along the way. The treatment is

often described as three steps forward and two steps back, with the

beginning often appearing as the two steps back. To get through the

rough times, rest as much as possible while also trying to do some light

exercise, such as walking, if at all possible. Ice swollen joints, try

to eat a good diet and drink tons of water to help flush out the toxins

from killing off the bugs. Unlike many " standard " RA treatments, the AP

does not mask the symptoms. Instead, it slowly gets them under control

by killing off the bugs responsible for it. You mention your concern

about why so many JRA and RA patients end up crippled from the illness

and question why this happens if the AP is, in fact, a good treatment.

I'll tell you my opinion. It is because of the general refusal of many

in the rheumatology field to take the time, patience and care to help

their patients stick to the AP through the rough patches. They, like

many of their patients, want a quick easy fix so they instead encourage

patients to take meds like metho, Enbrel and prednisone, which may

provide temporary relief masking the symptoms while the disease ravages

along its merry course under the radar. I think most of us know people

who felt better for a time on " traditional " treatments only to discover

that they not only quit working but that they had suffered significant

joint erosions while on those treatments. It is faster and easier to

write a prescription or inject a drug (and, therefore, also more

profitable) than it is to hold the hand of a suffering patient, listen

to their fears and concerns and reassure them to stick with the AP. I

guarantee you, if your doctor is not pro-AP, if you went to him today

with your concerns, he'd quickly convince you to come off it and get on

traditional meds. I also virtually guarantee that if you stick with it

and start showing the typical improvements, a doctor who doesn't believe

in the AP will question whether you really had RA in the first place,

rather than acknowledge the good the treatment does. Many of us have

experienced this attitude, which is really beyond explanation but it

happens and is the reason why we patients have to be informed, educated

and committed to seeking out what we feel is the best and safest

treatment for us. To my mind, the AP is that treatment and I've seen

too many positive results to ever question it again. Hang in there and

I hope you'll start feeling better soon.

Hugs,

a

Bkind2urPets@... wrote:

>

> Hello group, I have a general question for all or whomever has time to

> answer.

> I have now been on the antibiotics 5 weeks as of this Wednesday and have NO

> improvement whatsoever. If anything, my condition has gotten worse...

[Guest guest]

When I was first started taking minocycline I got worse too. I was told

that getting worse at first was a sign that the minocycline was killing off

mycoplasma and was, therefore, good news.

Hang in!

in Oregon

[Guest guest]

Hi Kris,

What dose of Minocin are you on? Dr. Brown would start his patients on only

50mg Monday and Friday the first week and then build up slowly by 50mg a week

to 100-200mg Mon Wed and Fri. If you have started on too high a dose, too soon,

then the herxheimer may create more pain than you can tolerate.

Someone I talk to regularly can only tolerate 50mg Minocin one day a week but

he is slowly seeing some benefit and is about to try and increase. Let me know

if I can help.

Chris.

>Hello group, I have a general question for all or whomever has time to

>answer.

>I have now been on the antibiotics 5 weeks as of this Wednesday and have NO

>improvement whatsoever. If anything, my condition has gotten worse. I have

>more nodules on my hands/feet now and the ones I had when I started have

>gotten bigger. I hate to give up on the therapy this early on, but also feel

>that I am risking more permanent damage as a result of all of this

>inflammation. My question is, how long did it take others to notice any

>improvement on this AP therapy? Does anyone in this group actually feel that

>they are in remission, if so, how long did it take you to get there? And

>lastly, maybe I am feeling this way do to dealing with EXTREME PAIN on a

>daily basis, but I am beginning to really DOUBT this therapy ( One

>would think that if antibiotics will put RA into remission or even calm it

as

>Scammell's book suggests, why are there so many children still suffering and

>being crippled by JRA (not to mention adults such as myself)?

>I guess I am just looking for some encouragement at this point....? I

>requested a slew of blood tests last week to check for Mycoplasmas/strep

>infections etc. I am waiting until they come back to make my decision on

>whether to continue with this therapy.

>This disease was under far better control when I was on Enbrel Injections,

>not that they are the answer either, but at least more damage was not being

>done; damage that can only be reversed by surgery. Right now I am taking

>only 5 mg prednisone and 3-500mg. relafen a day to manage pain, I have tried

>so many of the natural remedies for pain with no results. I am beginning to

>wonder if this treatment is one that works only for Lyme/infection types of

>arthritis? If one has RA without any underlying infectious/germ cause maybe

>this treatment will do nothing? This only stands to reason when you

>consider so many millions suffering with this disease, including children

>with JRA, if they could take a simple antibiotic and be in remission in a

>year or two I would think that is what they would be doing. This is where

>my doubt lies in this therapy. Any thoughts would be greatly appreciated,

as

>I am losing faith in this treatment FAST...which is quite easy to do when you

>can barely walk from severe pain. I guess you can tell from this email that

>I had an extremely painful evening (hardly any sleep, AGAIN), I am just fed

>up with feeling horrible!

>Thanks in advance for any and all responses.

>Be Well

>Kris

>PS. Yes, I am taking Lederle brand of Minocycline, and am a vegetarian, dont

>drink and dont smoke. (just thought I would answer those questions before

>they are asked)

>

>

>To unsubscribe, email: rheumatic-unsubscribeegroups

>

>

>

[Guest guest]

Kris,

I'd like to ditto what Dee says. I'm going on 3 months myself and have just

recently rounded the bend on what was a very nasty herx. It was very

frustrating to me as I was doing quite well before starting the antibiotics

just by adopting the AP diet. During the first two months I noticed a

pattern where the days I took the antibiotic were particularly bad. I am on

doxy 100mg 2x MWF. I usually had my best day on Sundays which is the

opposite of how I thought it would be. I'm sure it had everything to do with

the toxin load in my system from the dead and dying mycoplasm.

Make sure you are taking pro biotics to counter the negative digestive side

effects of your antibiotic. As Dee said, you may need to adjust your dosage

and work with your doctor to determine if the minocin needs to be replaced

with doxy or tetracycline (depending on the strains of mycoplasma you have).

As many people will tell you, the treatment needs some fine tuning to match

your body's specific requirements. I hope you feel better soon. Take good

care and try to rest as much as you can during the herx.

deano

> From: LJDSLL@...

> Date: Mon, 8 Oct 2001 19:39:18 EDT

> Bkind2urPets@...

> Cc: rheumatic

> Subject: Re: rheumatic Losing faith in the AP (

>

> Hi Kris,

>

> 5 weeks is soon to be looking for any kind of noticeable improvement.

[Guest guest]

Hi Kris,

Sorry to hear you're having trouble with the pain even though you're on meds

for it. Hang in there, I know it's tough but it will pay off in the long

run! I was taking 2 Vioxx a day when I started the Minocin and the 2 Vioxx

were barely helping. Now I'm down to one Vioxx in the AM and 100mg Minocin

twice a day MWF. I started out on 100mg once a day and after tolerating that

for awhile, went to twice a day. I also find that MSM and flax seed oil

help alot. Flax seed oil has lots of Omega-3 which helps inflammation.

Please hang in there, lord knows I've had my doubts at times but I am glad

I've stuck it out in times of doubt. Improvement may come in bits and pieces

but it does come.

All the best to you,

Dee