Information Needed

[Guest guest]

Yes1931@... wrote:

>

> The other day

> l read several posts from people who were coming off the AP due to little or

> no benefits. lt was encouraging to me to read these posts as l am having the

> same problems with the AP. l have received small benefits, possibly 20%

> improvement in pain over two and half years of steady AP treatment. <snip>l

would like to hear from other people in

> the group who have been on AP for a while and have received minor benefits.

Hi GC,

I haven't been on the AP as long as you -- just 4 months. I'm on

Minocin, 100mg 2x/day everyday for psoriatic arthritis. I haven't had

much improvement at this point, although conventional wisdom seems to be

that this isn't unusual. I'm not sure what the collective wisdom would

say at the 2-and-a-half-year point, although just last night I was

reading on Dr. Mercola's site that it can take up to 5 years (IIRC) for

sustained improvement, and I'm sure I read in the " Arthritis

Breakthrough " book that it can take years, too.

I think the answer is actually another question: how does one go about

getting a doctor to individualize the AP regimen?? That's my own

stumbling block at this point (well, maybe), and I would not be at all

surprised if it might be yours (and others) as well. I guess it's

progress that more doctors are willing to prescribe antibiotics for

rheum. diseases now, but where are the ones who will tailor it -- who'll

test for underlying conditions, alternate dosages or types of

antibiotics, and try different approaches, like the IV form of

antibiotics? Dr. MacPherson Brown clearly did NOT just give all

his patients the same treatment...

anyway, that's my two cents' worth -- I hope others can give better

information than I did!

--Louise

[Guest guest]

> A few weeks ago some people wrote to the group expressing negative

> experiences with the AP therapy. lt was expressed incorrectly. The

other day

> l read several posts from people who were coming off the AP due to

little or

> no benefits. lt was encouraging to me to read these posts as l am

having the

> same problems with the AP. l have received small benefits,

possibly 20%

> improvement in pain over two and half years of steady AP treatment.

l am not

> stopping the AP as l have no alternatives, l have done all the

conventional

> treatments . l am drug sensitive and cannot take the standard

treatment. l

> am limited to 50mgs vibramycin everyother day. l would like to see

more

> benefits but they just are not coming. l think it would be helpful

to hear

> from others who are in the same category as l am. Sometimes you

feel you are

> alone, but these stories have encouraged me to carry on knowing l

am not the

> only one out there having trouble. l would like to hear from other

people in

> the group who have been on AP for a while and have received minor

benefits.

> Also is there any documentation about people that receive only 40%

or less

> benefits over the long term? How many do not get any benefits?

And how many

> actually go into remission? Thank you.

> GC

GC,

What has your doctor suggested to you so far? Has he suggested

switching the antibiotics around for a bit? What have been his

comments about diet,etc? There could be a lot of factors - how much

is he helping to figure it out? (I had great benefits from the AP

till the Spring/Summer season struck and I flared badly and couldn't

shake it - however, I didn't have supportive doctors who gave a flip

as to what might be the problem. That seems to be my luck a lot

lately.)

[Guest guest]

Hey all...just thought I'd add my 2 pennies here...I don't post much but have

the time to do so now.

I've been on the AP for right at two years now. I believe I've had fairly

good progress...I can run two or three times a week and can lead a fairly normal

life. Sure...it hurts a bit to run and I usually feel it for a day or so

afterwards but the slap in the face running gives this disease is worth it!

Now...I tend to flare a bit in spring and fall, at the change of seasons.

This year's is worse than in the past thought not as bad as when I was first

diagnosed. Right now I have some pain at every step but I can handle it...I DO

NOT intend to return to the traditional method of treatment, even though the RDs

would prefer that. That is my personal choice and may not be the best choice

for EVERYONE...I think Mark would agree...if I recall, you still use some of the

traditional drugs don't you Mark? Last time we talked you were still taking

some Methotrexate....personally, I'm just trying to do everything I can to avoid

them.

Did that answer your question?...perhaps not but from what I recall it can

take a number of years to see improvement....I DO believe I've made much greater

improvement on the AP than while not on it.

Tony

Mino 100mg twice daily

Celebrex 100mg twice daily

May He Bless Your Socks Off!!

[Guest guest]

Hi Ethel

Thanks for replying to my two posts asking for information on which

brand of Minocin to buy. I have to say that you were the only person

who took the time to reply to either posting which although I'm

grateful was very disappointing. One posting was simply asking

people to click on a link and advise me if the photo of the

packaging was the correct brand....not a huge request.

Buying medication online is a very scarey business and I had hoped

for more concern from my fellow sufferes on this site.

After spending hours searching dozens of online pharmacy sites and

reading all the disclaimers, problems with customs detaining

packages etc, not to mention the dubious sounding companies involved

I have decided against this route.

I knew I had a tough fight on my hands, but I don't have the courage

to go it alone.

When I first chanced upon this site everyone was only too willing to

tell me of this 'benign' drug and all its benefits, however,

everyone bar one failed to mention the dangers, ie, Lupus-Type

syndrome and Liver failure which my GP informed me about. This

prompted me to do my own online research and believe me these

extremely serious side effects are very well documented even at much

lower doses than the drug is usually prescribed. Long term use

increases the risk considerably.

I do find it worrying that visitors to Rheumatic.org and this BB are

not provided with a more balanced view by being made aware of the

dangers as well as the benefits.

It has been a very difficult decision to make, but having researched

as much as possible, I have decided that for now I will put my faith

in my doctor and rheumie and continue the treatment I have been

prescribed.

May I say a big thank you to all those people who took time to

answer my many questions, I am very grateful to you all. I wish

each and every one of you continued good health and a life free from

pain.

God bless you all

Lindy

[Guest guest]

Hi Lindy,

I sincerely hope you are continuing to read this BB. You seemed upset

saying you did not receive the responses you felt you should receive

to your last two posts regarding Minocin. Lindy, we are all patients

like you. Many of us have other issues going on as well as our

rheumatic diseases. I for one am currently battling a ripped retina

and have been doing little posting, due to the terrific strain it

puts on my eye. I just scrolled back to see other posts of yours

answered and in great depth. When it comes to the Minocin issue,

there are many posts on this site that have delved into this issue.

I have Lupus and have been on the brand Minocin and it has been a

life saver. When we use the term, benign, it is just that. Side

effects for some, of course. As I answered you once before Aleve,

Advil Tylenol, Aspirin, all have side effects. I even suggested to

you to take milk thistle for the liver, if that was your concern. I

have been on Minocin over 2 1/2 years, no NO liver problems and NO

yeast problems. Yes, we are all so different that is why we are

monitored through blood work. AP can't be compared to the toxic drugs

in my book. I know you are on Plaquenil...I was too, at one time.

All I can say is, I am so grateful for having an allergic reaction to

it and had to be taken off at once. Read up on those side effects,

Lindy.

I know you have it rough trying to get a doctor close by to

administer AP...Many here in this country have had to fly and travel

to see a doctor who knows what he is doing with antibiotic

treatment. That still would be your best bet.

We can't change your mind Lindy...wouldn't even consider that...All I

ask is that you REALLY do your homework an investigate AP

further...We're not selling anything, only improved health....

Much luck with your decision.

Barb

> Hi Ethel

> Thanks for replying to my two posts asking for information on which

> brand of Minocin to buy. I have to say that you were the only

person

> who took the time to reply to either posting which although I'm

> grateful was very disappointing. One posting was simply asking

> people to click on a link and advise me if the photo of the

> packaging was the correct brand....not a huge request.

> Buying medication online is a very scarey business and I had hoped

> for more concern from my fellow sufferes on this site.

> After spending hours searching dozens of online pharmacy sites and

> reading all the disclaimers, problems with customs detaining

> packages etc, not to mention the dubious sounding companies

involved

> I have decided against this route.

> I knew I had a tough fight on my hands, but I don't have the

courage

> to go it alone.

> When I first chanced upon this site everyone was only too willing

to

> tell me of this 'benign' drug and all its benefits, however,

> everyone bar one failed to mention the dangers, ie, Lupus-Type

> syndrome and Liver failure which my GP informed me about. This

> prompted me to do my own online research and believe me these

> extremely serious side effects are very well documented even at

much

> lower doses than the drug is usually prescribed. Long term use

> increases the risk considerably.

> I do find it worrying that visitors to Rheumatic.org and this BB

are

> not provided with a more balanced view by being made aware of the

> dangers as well as the benefits.

> It has been a very difficult decision to make, but having

researched

> as much as possible, I have decided that for now I will put my

faith

> in my doctor and rheumie and continue the treatment I have been

> prescribed.

> May I say a big thank you to all those people who took time to

> answer my many questions, I am very grateful to you all. I wish

> each and every one of you continued good health and a life free

from

> pain.

> God bless you all

> Lindy

[Guest guest]

On Sunday, November 3, 2002, at 07:53 PM, purpleoranges2002 wrote:

> grateful was very disappointing. One posting was simply asking

> people to click on a link and advise me if the photo of the

> packaging was the correct brand....not a huge request.

I saw your request and had two thoughts...

One was that someone else was going to be able to answer your question

better than I could. I imagine that was a common reaction so a lot of

people didn't answer because they thought someone else would.

The other thought was concern that you were trying to go it alone

without a doctor. None of the information on this site is intended for

patients to try and do AP themselves. You really should find a doctor

who will take you through this, even if you have to travel.

> When I first chanced upon this site everyone was only too willing to

> tell me of this 'benign' drug and all its benefits, however,

> everyone bar one failed to mention the dangers, ie, Lupus-Type

> syndrome and Liver failure which my GP informed me about. This

> prompted me to do my own online research and believe me these

> extremely serious side effects are very well documented even at much

> lower doses than the drug is usually prescribed. Long term use

> increases the risk considerably.

I did a search through the rheumatic.org site and found plenty of

references to various difficulties that may be encountered on

antibiotics. You're right though, there's no specific underlining of

lupus... but there's another point of view on this. It is possible that

lupus symptoms could be presenting themselves as the result of a

Herxheimer reaction even if the patient and doctor were not previously

aware of any problems.

What doses are " usually " prescribed? Acne treatment (which is certainly

not a life threatening condition) has much higher doses, also long

term. The MIRA trial used very high doses as well.

> I do find it worrying that visitors to Rheumatic.org and this BB are

> not provided with a more balanced view by being made aware of the

> dangers as well as the benefits.

How can you decide your health based on how many people answered an

email? How are we responsible for weird online drug companies?

The lupus issue has been discussed many times, so you can search the

archives of this group for as much information as you want about this.

We can't keep posting up information over and over again or nobody

would read this list.

You could also have let us know about the information that you felt

should be on the site instead of saying we're unbalanced.

> It has been a very difficult decision to make, but having researched

> as much as possible, I have decided that for now I will put my faith

> in my doctor and rheumie and continue the treatment I have been

> prescribed.

That is indeed a better option than trying to self-medicate over the

Internet. I would do the same in your case.

However, I would also be trying to find a doctor who knows about AP,

because if you think antibiotics have bad side effects, you really

aren't going to be at all happy with the standard treatments.

Most of the people in this group are here after having the standard

treatments, not before. Read the case histories on rheumatic.org - note

how many of them felt better, but only for a while, on the same drugs

you're on now.

--

spwhite@...

[Guest guest]

Hello Friends,

I am in need of warm/cool feedback regarding a provider of ABA services called

" Behavior Concepts Inc. " located in Massachusetts (I believe).

I am also interested in feedback from anyone who has experience working with

Gretchen Dietrich, M.S., BCBA and/or , M.A., BCBA.

All information will be kept strictly confidential. Thank you in advance for

your assistance.

Tonya Boyce

Advocate

West Groton, MA

978-448-8386

abc123tonyab@...

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[Guest guest]

>

> I need further information about diets and so forth. I 've had a few

> folks contact me and I don't have the info to give. I have posted

> other links on the chattykat website, but don't have any direct links

> to specific dieting info which they are looking for.

I have lots of diet links here

http://www.danasview.net/parent3.htm#diet

Dana