Re: leaving the AP for the conventional drug route

[Guest guest]

On Sunday 28 October 2001 13:23, Suzieus@... wrote:

> Well gang,

>

> I have come to a crossroads and I'm not sure what to do about it. I have

> been on the AP for ten months now with NO real signs of improvement. It

> has been a more down than up ride in other words...where I thought I was

> getting better, but mostly I was just losing ground.

Are you just taking Minocin? My doc gets much better results by adding

Flagyl and Nysoral short term to the minocin. He says many dont get results

on minocin alone. He has RA himself in remission and is very knowlegable. I

just use the Minocin so far, no reason to change anything as I am in

remission(knock on wood). If you are only taking minocin you havent explored

all aspects of the AP.

I will add the first year was tough for me, I was bedridden for several

months on conventional meds, pred/arava/vioxx. Added mino to those and weaned

off. At the 6 month mark I noticed knee and other swelling reduced, at 8

months i was on Mino and Advil only but in pain and using crutches. at one

year I put away the crutches, at 16 months i built a deck and started

residing and painting my moms house. at 19 months i was off advil and only

take minocin 100mg daily. At 20 months blood work shows sed rate of 2 and RF

of 36 down from 80 sed and 400 rf at the begining of Mino.

Mino works for me, but you need to find out why you are non responsive. After

experiencing this recovery, which to me is a amazing, I am positive that some

kind of antibiotic is needed to beat this disease, the trick is to find what

you need to make it work for you. You probably need to find a new doctor.

>

> Up until Sept. I followed the total regimen of Dr. Mercola...that includes

> the diet, recommended homeo and vit. supplements, NST and EFT treatments.

> Then I ended up in bed in Sept...I am talking totally disabled, with less

> and less recovery from pain, disability and disfigurement - for the entire

> month.

Sounds like Mercola is cashing in. I dont know about those treatments, Stick

to the basics, save your money and see a different doc. Take a drive to

chattanooga I will hook you up.

You know he used to promote , really push vegetarianism and one day decided

he wanted a steak. I still remain a vegetarian.

>

>

> I know many of you have felt the doc is great and I thought so too, but

> frankly I'm a little non-plussed with his bedside manner. I wrote to him

> at the beginning of this month to tell him what was going on and his

> response was for me to drive 3 hours to see him yet again, to undergo more

> of the NST treatments...the last one I'm sure of it, caused me to go to bed

> at the beginning of Sept and only get out of it by the second week of this

> month! I told him I was at the end of my rope with this treatment and with

> the symptoms, but like I said...he just wanted to see me again.

See a different doc, try the IV's or other additional antibiotics.

>

> The thought of driving the 3 hours to see him and spend more money and

> undergo another of those treatments (which I absolutely HATE - mostly

> because they result in me being in bed for several days afterward with no

> apparent improvement) is tearing me up.

>

> My only other option is to see a local practitioner....there is NOBODY in

> this area who would agree to the AP as far as I know, although I admit

> being too sick to check it out thoroughly enough and just go on the

> recommended cocktail of poisions in order to get some relief. You see, I

> have two children and they will be of age and able to take care of

> themselves in nine years, but right now are totally dependent on me...so I

> would just need to be well for nine years and then I could mess with all

> the alternatives I wanted. Of course by then I will be older, the disease

> will have had lots more time to get deeper into my system and of course, AP

> doesn't work as well the second time around.

Did you check with the roadback list? I bet theres someone in your area.

E-mail Marge@... and ask for a updated list for your area.

>

> I'm sorry to burden you all with this sob story, but I really have no where

> else to turn for just some opinions. I want to be talked out of going on

> the conventional treatments and I usually see posts that define them as

> always going wrong somehow...but I am on the market now for relief...with a

> capital R. I have friends locally who have taken the chemical route and at

> least are functioning, even if they have a small degree of discomfort and a

> little disability...but they are ALL doing better than I am at this

> juncture.

>

> I know many of you have been in worse situations probably than I am in

> right now. I have been reading this site for a year and a half every day.

> I have contributed to it as well and almost feel like a traitor writing

> this...but like I said...I really have nowhere else to turn, except to the

> local but legal drug dealer.

>

> Any suggestions as to how to deal with this mess would be greatly

> appreciated.

Stick to the Mercola diet which is pretty healthy,and take a drive down to

chattanooga and visit my doc.

>

>

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[Guest guest]

> Of course by then I will be older, the disease will have had lots

more time

> to get deeper into my system and of course, AP doesn't work as well

the

> second time around.

Do we know for a fact that the AP doesn't work as well the 2nd time

around? I can imagine it's possible to build up resistance to an

antibiotic, but I'm wondering what the % is of those people for whom

it no longer works. And is there any documentation for that?

As far as your overriding concern, I've been there - tough place to

be. Has Dr. Mercola tried other antibiotics? What dosage are you

currently taking? Has he tried prednisone to get you past the really

tough times? My doctor never tried that but he wasn't a real believer

in the protocol despite being listed as one of the docs who would

dispense antibiotics.

I gave up on minocycline (100mg 2x/week) for the same reasons - in

retrospect, it is very hard to say if that was a wise idea, but pain

and lots of doctors twisting my arm swayed me over to the evil

guys. Whereas methotrexate has worked fine for me for the past 2

years and allowed me to function at approx a 75% level(whatever that

is), ask you doctor what your reaction might be if he takes you off

of it for some reason. Mine has been awful. Had I known how bad, I

would never have let doc take me off of it, without a 2nd opinion

first. As far as side effects, I had none as long as I took my folic

acid. YMMV

Have x-rays shown any progression in joint damage? Mine were

starting to according to my first radiologist which scared me too.

Now my 2nd radiologist doesn't see any damage - go figure. I think

next doc I'm gonna see is a witch doctor.

Mark

http://www.pbase.com/athiker95

[Guest guest]

>

> I gave up on minocycline (100mg 2x/week) for the same reasons - in

> retrospect, it is very hard to say if that was a wise idea, but

pain

> and lots of doctors twisting my arm swayed me over to the evil

> guys.

Sorry, meant to say that I took minocycline 7 days a week ,

100mg/2x/day.

Mark

[Guest guest]

,

You know you can mix the two and there are a lot more GP that will give you

the AP than there are rhumy's. I know of a lot of people who mix the AP with

other meds. I never went off of mine when I was on the AP, I am currently

not on the AP either but I believe that it has helped many of the people on

this list but I also know that everyone is different. I stopped the AP

because of stomach problems with the antibiodics. I could no longer take it

after being on it for aroudn 9 months.

I have days, weeks sometimes up to a month of what you descibed that

happened in Sept and I am on the conventional medications so it can happen

either way. We have an illness and I know how hard it is when you have young

children I feel as though I have missed so much of mine growing up they are

19 and 20 now and the oldest is talking about getting married. I got ill

when they were 10 and 11 important times in their lives but then isn't ever

day and important time? That is the thing that upsets me the most is the

time this illness has taken away from my family. Sometimes I feel like a

stanger in my home even though I know that they love me. I guess it is more

guilt than anything else and I do not think it has been proven that if you

go off the AP that is wont work the second time.

My suggestion would be to lower the AP and use the conventional drugs too if

you can find some that will help you to be able to spend more time with your

family. You can take a much lower dose which is what I had to do because I

got so ill from it at first.

You will be in thoughts and I really hope things work out for you!!

peace,

Sherry

> Well gang,

>

> I have come to a crossroads and I'm not sure what to do about it. I have

> been on the AP for ten months now with NO real signs of improvement. It

has

> been a more down than up ride in other words...where I thought I was

getting

> better, but mostly I was just losing ground.

>

> Up until Sept. I followed the total regimen of Dr. Mercola...that includes

> the diet, recommended homeo and vit. supplements, NST and EFT treatments.

> Then I ended up in bed in Sept...I am talking totally disabled, with less

and

> less recovery from pain, disability and disfigurement - for the entire

month.

>

>

> I know many of you have felt the doc is great and I thought so too, but

> frankly I'm a little non-plussed with his bedside manner. I wrote to him

at

> the beginning of this month to tell him what was going on and his response

> was for me to drive 3 hours to see him yet again, to undergo more of the

NST

> treatments...the last one I'm sure of it, caused me to go to bed at the

> beginning of Sept and only get out of it by the second week of this month!

I

> told him I was at the end of my rope with this treatment and with the

> symptoms, but like I said...he just wanted to see me again.

>

> The thought of driving the 3 hours to see him and spend more money and

> undergo another of those treatments (which I absolutely HATE - mostly

because

> they result in me being in bed for several days afterward with no apparent

> improvement) is tearing me up.

>

> My only other option is to see a local practitioner....there is NOBODY in

> this area who would agree to the AP as far as I know, although I admit

being

> too sick to check it out thoroughly enough and just go on the recommended

> cocktail of poisions in order to get some relief. You see, I have two

> children and they will be of age and able to take care of themselves in

nine

> years, but right now are totally dependent on me...so I would just need to

be

> well for nine years and then I could mess with all the alternatives I

wanted.

> Of course by then I will be older, the disease will have had lots more

time

> to get deeper into my system and of course, AP doesn't work as well the

> second time around.

>

> I'm sorry to burden you all with this sob story, but I really have no

where

> else to turn for just some opinions. I want to be talked out of going on

the

> conventional treatments and I usually see posts that define them as always

> going wrong somehow...but I am on the market now for relief...with a

capital

> R. I have friends locally who have taken the chemical route and at least

are

> functioning, even if they have a small degree of discomfort and a little

> disability...but they are ALL doing better than I am at this juncture.

>

> I know many of you have been in worse situations probably than I am in

right

> now. I have been reading this site for a year and a half every day. I

have

> contributed to it as well and almost feel like a traitor writing

this...but

> like I said...I really have nowhere else to turn, except to the local but

> legal drug dealer.

>

> Any suggestions as to how to deal with this mess would be greatly

> appreciated.

>

>

>

[Guest guest]

Hi Mark,

I have seen the tapes from The Roadback Foundation's Physician's

Conference, including the presentation by Dr. Trentham, a noted expert

on AP and his comment was that he advises patients to stay on a

maintenance dose for life because if they go off the AP and suffer a

relapse, which often happens if a patient goes completely off the AP, he

stated that achieving the same good results a second time are much

harder. His word is good enough for me.

Hugs

a

Mark Holmes wrote:

>

> Do we know for a fact that the AP doesn't work as well the 2nd time

> around? I can imagine it's possible to build up resistance to an

> antibiotic, but I'm wondering what the % is of those people for whom

> it no longer works. And is there any documentation for that?...

[Guest guest]

> Hi Mark,

> I have seen the tapes from The Roadback Foundation's Physician's

> Conference, including the presentation by Dr. Trentham, a noted

expert

> on AP and his comment was that he advises patients to stay on a

> maintenance dose for life because if they go off the AP and suffer a

> relapse, which often happens if a patient goes completely off the

AP, he

> stated that achieving the same good results a second time are much

> harder. His word is good enough for me.

> Hugs

> a

Makes sense to me (sort of the same thing that happened to me now

that I stopped metho). I wasn't relapsing from discontinuation of

the AP when I switched to metho - I was just hurting more than I

could deal with. Unfortunately no doctor guided me in suggesting I

should continue to take the mino with the metho and I was a bit

afraid to continue to do so. So, that looks rather grim for me

should I decide to go the antibiotic route again. Not impossible

perhaps, just not so easy. The same thing is said about metho when

you stop it. A damn conundrum, if I do say so myself!

mark

[Guest guest]

Hi Mark,

Just because it may be harder to get as good results a second time

around doesn't mean that it wouldn't be worth trying. I think it would

be. I think the chief warning is that if you achieve remission, you

shouldn't get cocky and think you are cured and can now abandon the

treatment, as so many people have been tempted to do to their later

regret. Instead, it is better to remain cautious and stay on a

maintenance dose. However, if you have come off the treatment, I still

think it is better to get back on it rather than to dismiss it and

continue to deteriorate. I think some of us get caught up in the idea

that if we don't achieve total remission, the AP has failed us but I

don't think that is true. If it has helped in some way, be it with

reduced swelling, slowing or stopping joint erosion or keeping you

either off or on lower doses of more dangerous drugs, then you have

achieved a measure of success, even if that's not exactly the success

you were looking for. We all want miracles and some of us are lucky

enough to get them but a partial miracle is better than nothing and

should not be discounted. I know I'd like to be able to go back to

skiing, skating, biking and hiking but I've learned to settle for still

being mobile, not on drugs that scare me and able to still enjoy some

activities if I'm sensible about which ones I choose and pace myself

sensibly. If better things happen as I go along, then that's a bonus

but I'm certainly far better off than I was pre-AP, which was virtually

flat on my back half of the time. I know I was headed for even worse

things so I feel my gains from the AP are blessings.

Hugs

a

mholmes@... wrote:

> Makes sense to me (sort of the same thing that happened to me now

> that I stopped metho). I wasn't relapsing from discontinuation of

> the AP when I switched to metho - I was just hurting more than I

> could deal with. Unfortunately no doctor guided me in suggesting I

> should continue to take the mino with the metho and I was a bit

> afraid to continue to do so. So, that looks rather grim for me

> should I decide to go the antibiotic route again. Not impossible

> perhaps, just not so easy. The same thing is said about metho when

> you stop it. A damn conundrum, if I do say so myself!

>

> mark

>

[Guest guest]

Dear Ronnie,

thanks a lot for your response to my email about leaving AP. I really appreciate all the input I received to help me in this very painful decision.

<<I quit the AP after 10 months also. I have PA which has affected my hands and feet.

I had a severe flare at 10 months and went on Enbrel which has been miraculous. >>

I found this most interesting. Seems like this must be a crucial point in the treatment.

<< At this point I think that the AP is a Religion. If you look at the studies these

people are always discussing most people drop out at about 10 months due to complications or drug intolerance.>>

I don't know that most people drop out at about ten months, although it would seem to some, perhaps, that after 10 months of trying something, one should see more favorable results. It sure seemed that way to me anyway.

I don't know that the herx is a myth. It actually makes sense to me, as does the idea that perhaps mino has an anti-inflammatory property...that would have been a plus in my case...but I noticed not a whole lot of difference for any length of time while on it and that is where my problem was coming from.

I think my other problem really has to do with Dr. Mercola's attitude toward his regimen which patients must follow for him to treat them. I disagree with a few very important components for his treatment, not to mention the three hour ride to his office which just about knocks me off my pins for a couple of days afterward.

<< I spent thousands getting a second opinion to my RD form Dr. Franco. Lots of X-rays and useless and expensive designer test. I wish I would have started Enbrel therapy earlier and I would not have the joint damage I now have. >>

I was very sorry to hear this. I feel a similar disappointment in my experience with Mercola. But I don't regret having tried this way, as his diet taught me a great deal about weight control which I suffered with before I met him. My husband also lost weight and that is always a good thing. The price- well our insurance didn't cover any of it...so I was being doubly penalized...the high cost of the medical care of Dr. Mercola and the $200 or so each month taken out of my husband's paycheck...insurance we couldn't use through any of this...cheez!

<< Anytime someone tells you have to get worse before you get better you have to

question that>>

Yes I agree you have to question it, but I don't believe it's a totally bogus idea either...many natural remedies actually do make you worse before they make you better sometimes.

Lastly, I totally disagree with your calling this site a cult. I have been in a cult and know exactly how they operate and this is not a cult. That's a bit unfair of you to say. I just think that the AP is perhaps not a treatment for everyone,but with the chronic diseases we all suffer from, it was definitely worth the try, and the people on this site are very wonderful caring people.

I hope you will reconsider the way you are thinking about the people who share all the information on this site even if you don't think the AP is the treatment for you. We all have to do what is best for our own health and that is the one of the strongest tenets of this website that has become apparent to me in the year or more I've been reading the posts. Don't throw the baby out with the bath water, Ronnie. There's an awful lot of good here.

Again, thanks for your input on what I should do about my own personal situation and I wish you lots of good health for future no matter what route you have chosen to obtain it.

[Guest guest]

Hi Agnes,

thanks for your email. That was an interesting story about the woman on metho...kind of says volumes about the drug, doesn't it. Anyway, after reading all these posts and I'm really trying to answer each one, because I feel that it's important to keep the channels of communication open regardless of which route I take, I have lots of information to help me make a very informed decision. And I still have lots of room to decide...I haven't seen a local rheumy yet...have found out the local rheumy who is an old guy (not to denigrate seniors...just that most of the older rheumies seem more stuck in their ways and less open to alternatives, at least in my 10+ years experience) has retired and we got a new guy...that could make a big difference.

Anyway, the point I'm trying to make in this roundabout verbose fashion is that I appreciate all the information I have been given and know I will be guided by the BIG GUY to do the right thing for my health and that of my family. Thanks again for taking the time and good luck in your quest for good health.

[Guest guest]

Thanks for your update . I hope you find relief in whatever treatment

you decide to take on. This is a frustrating disease at times, especially

with so few concrete answers out there. I appreciate the way you handled

Ron's response. I can't quite figure out why he's still a part of this group

actually, besides to take pot shots at the members here. I guess I should

thank him, as his outlandish talk made me come here from another group and

learn more about AP. I've always been one to fact find for myself and not

let someone who casts stones make my decisions for me.

I'm 4 months into the program and feeling wonderful. I do have my bad days,

but I can already see the difference the AP and AP diet have made in my

life. I believe AP is only part of an overall program to wellness as it

sounds like you've figured out too. In my case, I believe healing my

digestive system is the key to my success and future elimination of

arthritic symptoms.

I hope you'll continue to participate in the group as there is much more

than AP going on here.

Take good care,

deano

From: Suzieus@...

Date: Thu, 1 Nov 2001 19:25:48 EST

ronevans@..., rheumatic

Subject: Re: rheumatic leaving the AP for the conventional drug route

Dear Ronnie,

thanks a lot for your response to my email about leaving AP. I really

appreciate all the input I received to help me in this very painful

decision.

[Guest guest]

Hello and Everyone,

I know that alot has been said on here about the standard treatments,

and I will say that all should be looked at,and everyone is different, but I

would like to remind some on here that it doesn't always happen when we want,

sometimes it takes longer than we want to get better. I did alot of

prednisone and all the other standard stuff gold.anti-malarial drugs,

ansaids. It took me 3 hard yrs of herxes and pain on and off There were days

I thought I would never get well. I went slowly from bed=ridden to walking.

Yes it was rather hard, but today I am fine I take doxy and MSM and an aspirn

aday/ I live a very normal life at 53 and do everything, I have no deformity

and no PAIN anymore. The reason I come out to say this more than once is to

remind the ones on this, that it may take longer but it has been well worth

it. In my mind most of the standard treatments are just a bandaid and are

very hard on you. Of course some will argue this but remember I have been on

this treatment for 14 yrs now and all my blood tests are fine. I know there

are more like me who have achieved this from AP, so even though this may take

some time and yes you do get worse before you get better, I thank God I got

on this when I did. No it is not perfect,but I think the best out here. I

wish you all to be pain free as I am now. Just My View from Ohio

[Guest guest]

Thanks, - We all need to hear this!!! Judy(deejay)

Re: rheumatic Re: leaving the AP for the conventional drug route

> Hello and Everyone,

> I know that alot has been said on here about the standard

treatments,

> and I will say that all should be looked at,and everyone is different,

but I

> would like to remind some on here that it doesn't always happen when we

want,

> sometimes it takes longer than we want to get better. I did alot of

> prednisone and all the other standard stuff gold.anti-malarial drugs,

> ansaids. It took me 3 hard yrs of herxes and pain on and off There were

days

> I thought I would never get well. I went slowly from bed=ridden to

walking.

> Yes it was rather hard, but today I am fine I take doxy and MSM and an

aspirn

> aday/ I live a very normal life at 53 and do everything, I have no

deformity

> and no PAIN anymore. The reason I come out to say this more than once is

to

> remind the ones on this, that it may take longer but it has been well

worth

> it. In my mind most of the standard treatments are just a bandaid and are

> very hard on you. Of course some will argue this but remember I have been

on

> this treatment for 14 yrs now and all my blood tests are fine. I know

there

> are more like me who have achieved this from AP, so even though this may

take

> some time and yes you do get worse before you get better, I thank God I

got

> on this when I did. No it is not perfect,but I think the best out here. I

> wish you all to be pain free as I am now. Just My View from Ohio

>

>

> To unsubscribe, email: rheumatic-unsubscribeegroups

>

>

>

[Guest guest]

> Yes it was rather hard, but today I am fine I take doxy and MSM and

an aspirn

> aday/ I live a very normal life at 53 and do everything, I have no

deformity

> and no PAIN anymore. Of course some will argue this but remember I

have been on

> this treatment for 14 yrs now and all my blood tests are fine. I

know there

> are more like me who have achieved this from AP, so even though

this may take

> some time and yes you do get worse before you get better, I thank

God I got

> on this when I did. No it is not perfect,

Just a few questions to make sure I understood you correctly. You

indicate you are pain free and able to do everything which is

fabulous, but then you say that " No, it is not perfect " - . I'm a bit

confused by that - seems like in your case the outcome has been

perfect. Can you elaborate?

You also mentioned that you had been on this treatment for 14 years -

do you mean the AP? I guess I wondered because you mentioned all

your blood tests were fine - what sort of blood tests are you

referring to? I didn't know there were actually blood tests one

needed to be doing on the AP, except to perhaps monitor sed rate or

rheumatoid factor which as I understand it, don't mean a whole heck

of a lot later on (I know my sed rate doesn't correlate worth a flip

to my flares). Also - do you still maintain some sort of maintenance

dose of the minocycline?

And I guess my final question is - how many years into the 14 did you

finally achieve the pain free and back to normal status? And during

those initial years of getting through it, did you take anything

besides minocycline to overcome those horrid flares?

Thanks,

Mark