Re: son with newly diagnosed arthritis

September 28, 2000

Before you put him on the hard stuff give some alternative medicine a chance

he will not suffer as much. Try nutrition, supplements, see a naturapath or

a homeopath, acupuncturist, etc.. He is young and if you can avoid him

having to go through all the medicinal garabge we've had to go through why

not?

_Adriel

> From: nietling@...

> Date: Thu, 28 Sep 2000 15:23:51 -0000

> rheumaticegroups

> Subject: rheumatic son with newly diagnosed arthritis

>

> I'm beside myself......my 8 year old son has been diagnosed by our GP

> with a rheumatic arthritis. He's on 250 mg of Naprosyn twice a day.

> He's being referred to a pediatric rheumatologist. I have PA and RA

> runs in both side of the family. I'll let him see a pediatric

> rheumatologist just so I can be told what form of arthritis they

> think

> he has. I hate to have him put on all the nasty drugs that I've been

> taking....azulfidine, prednisone and NSAIDS. I have the name and

> number of a doctor who will prescribe the AP. Is this appropriate

> for

> children? I'd love any comments anyone may have........

> Thanks!

> ine

>

> To unsubscribe, email: rheumatic-unsubscribeegroups

>

September 28, 2000

Dear ine,

My daughter was dx with JRA almost 2 years ago. In the beginning we chose

not to do any of the rheumie's drugs, it just seemed too extreme, more scary

than the disease, and we went through the first year on a combo of

acupuncture, homeopathy and nutritional supplements, but we could tell we

hadn't found the answer as she continued to have pain and it seemed to be

spreading. I found the rheumatic web site doing research into arthritis on

the web, and on Nov. 1st last year we took her to see Dr. Trentham in Boston.

He started her on minocin, but felt her inflammation was so bad that she

should also start a low dose of methotrexate to bridge her over till the

minocin kicked in. Well, she started herxing almost immediately and for the

following 3 months we lived in hell. She was bed ridden, pain all over her

body, many joints swollen, in agony. We really despaired and I found a lot

of support from folks on the support group who encouraged us to hang in

there, that she would improve. Their faith in the treatment helped us

through some of the darkest times of my life. About the end of January she

started to come out of it, less pain, more energy, better appetite. She

returned to school 1/2 time in March and was able to do full time starting

April. She started physical therapy which has helped her tremendously. She

just started high school 3 weeks ago. For the most part she has her life

back. She has started to cut back on the methotrexate with the intention of

being off it entirely in the next few months. She is not 100% though. She

still has swelling in her knees and knuckles and some tightness in her

shoulder and elbows but they are working on that in PT. She can't yet play

team sports, ( she was a big athlete) which is a huge sorrow for her. She

still has some occasional pain, but not much. When I think of where she has

come from, what she's gone through, I'm very grateful for finding this

treatment. I'm trying to keep her focused not on her loses but on her

progress, and hopeful that more progress is in store. Who knows what she

will be able to accomplish given more time on the treatment.

That's where we are at now, I have some questions about the way Dr. Trentham

prescribes the antibiotic. The advice on the web site is to start much

slower than he does, maybe her herx would have been less if we'd done it that

way. He also doesn't do IV's which many people here do, I wonder if that

would be good for her too.

I do know that he treats young children, I spoke to the mother of a new

patient of his to share our experience, her 9 year old daughter has JRA and

is in a wheel chair. I strongly encourage you to do this treatment for your

son and not to wait the earlier in the disease you start the better. I only

wish we'd heard about it earlier, although I know many people here were sick

for years before starting the AP and have had success.

I hope this helps, good luck, I'll keep you in my prayers.

Sincerely,

Kathy Rosenberg

September 28, 2000

I have to disagree about trying other alternate methods before antibiotics.

If the earlier RA is treated the better, don't waste time with other

alternative methods. The O' Dell study, posted by Pierre, shows antibiotic

treatment within the first year yielding very positive results. Why wait

until the disease is stronger and more resistant to try it? Then the herx is

even more severe. He may not even have to go on the " hard stuff " by treating

the disease early with antibiotics. I have had tremendous success treating

my RA with minocin within the first year. I'm on a low maintenance dose

already, after just a few months on minocin.

M

September 28, 2000

The only problem with this is that it does not help the body fight for it

self. Western medicine in general is a crutch not a solution. Nevermind what

antibiotics can cause later on. Many people who have chronic fatigue

syndrome have found that it began after antibiotics. You say the soner the

btter but, the sooner you put the human body through anything processed and

unnatural is just when you put it in the way of sickness. Th study talks

about the first year but, because it is new you can not talk about the 10th

or 30th year. Strengthening the body and let it do for itself is always the

best choice. worst case scenario then you can get all the garnbage put iny

our system. Don't fool yourself the drugs in the long run are garbage not

god sends. The pill fix delusion is just that. Are supplements necessarly

the answer? No but, anything that promotes the body to take over is.

Antibiotics and western drugs in general don't do this.

_adriel

> From: eson@...

> Date: Thu, 28 Sep 2000 13:37:27 EDT

> azure@..., rheumaticegroups

> Subject: Re: rheumatic son with newly diagnosed arthritis

>

> I have to disagree about trying other alternate methods before antibiotics.

> If the earlier RA is treated the better, don't waste time with other

> alternative methods. The O' Dell study, posted by Pierre, shows antibiotic

> treatment within the first year yielding very positive results. Why wait

> until the disease is stronger and more resistant to try it? Then the herx is

> even more severe. He may not even have to go on the " hard stuff " by treating

> the disease early with antibiotics. I have had tremendous success treating

> my RA with minocin within the first year. I'm on a low maintenance dose

> already, after just a few months on minocin.

> M

>

September 28, 2000

have you ever thought about giving him Glucosamine? It is a supplement that

helps maintain cartilage and joint movenment.

~

rheumatic son with newly diagnosed arthritis

> >

> > I'm beside myself......my 8 year old son has been diagnosed by our GP

> > with a rheumatic arthritis. He's on 250 mg of Naprosyn twice a day.

> > He's being referred to a pediatric rheumatologist. I have PA and RA

> > runs in both side of the family. I'll let him see a pediatric

> > rheumatologist just so I can be told what form of arthritis they

> > think

> > he has. I hate to have him put on all the nasty drugs that I've been

> > taking....azulfidine, prednisone and NSAIDS. I have the name and

> > number of a doctor who will prescribe the AP. Is this appropriate

> > for

> > children? I'd love any comments anyone may have........

> > Thanks!

> > ine

> >

> > To unsubscribe, email: rheumatic-unsubscribeegroups

> >

>

> To unsubscribe, email: rheumatic-unsubscribeegroups

>

September 28, 2000

My 9 1/2 year old daughter has JRA and has been on the AP (Biaxin in her

case) for 9 months. Prior to that she was on Naprosyn, then Indocin then

Prednisone with Methotrexate recommended for her future. After carefully

researching the possibilities we decided that the AP was worth a shot before

we went to Methotrexate. As of today, the only drug that takes is

the Biaxin, she was weaned off prednisone in April and Indocin in August. We

did have a short period where her sed rate went up upon starting the AP, but

since she was still on the prednisone it was not any worse, and actually

still better, than she had been. We also combined the AP with some dietary

restrictions, no soda, staying away from refined sugars (not easy but can be

done) and various nutritional supplements.

I personally believe that this is the way to go. After 15 months of

traditional treatments, she was certainly no better and the prognosis was not

good. We did confirm that she had no joint damage (amazing since she had an

incredible amt of swelling) and felt that we had the time to give the AP a

try.

Lot's of luck. I find it incredible that you found a Doctor willing to

prescribe. Where are you. We had to go to California to see Dr. Franco. We

currently have a local rheumatologist who tolerates the AP because it appears

to be doing no harm. Hopefully he will consider it for other patients in the

future since she is doing so well (her sed rate was once a high of 165; in

June her sed rate was 20 and her CRP was normal.)

September 28, 2000

ine,

This treatment is absolutely appropriate for children and far safer than

the more " traditional " treatments. The main difference for kids is the

antibiotic of choice. Since minocycline can cause staining of the teeth

in children, erythromycin is generally used instead. In my opinion, you

should make your way fast to the AP doctor and insist on using

antibiotics. Good luck and don't forget to ask if you have any

questions.

Hugs,

a Peden

nietling@... wrote:

>

> I'm beside myself......my 8 year old son has been diagnosed by our GP

> with a rheumatic arthritis...I have the name and

> number of a doctor who will prescribe the AP. Is this appropriate

> for

> children? I'd love any comments anyone may have........

>

September 28, 2000

If you get on the antibiotics you will ruin any affect the alternative stuff

can do. At least at the same time. Stduies come out every other week that

something that was so great for you is now horrible. Now you could say the

same tings about alternative medicine the main difference is there is not a

list of 50 million side effects. This is your tip that your body doesn't

like it.

_adriel

> From: a Peden <paula.peden@...>

> Organization: @Home Network

> Date: Thu, 28 Sep 2000 17:19:15 -0600

> eson@...

> Cc: azure@..., rheumaticegroups

> Subject: Re: rheumatic son with newly diagnosed arthritis

>

> ,

> I have to agree with you. By all means, try the natural, alternative

> methods along with the AP but I wouldn't delay getting on the AP because

> the studies do show faster results with shorter-term illness. While

> diet and supplements can help, I truly don't think they do the whole job

> except perhaps for a lucky few.

> Hugs,

> a Peden

>

> eson@... wrote:

>>

>> I have to disagree about trying other alternate methods before antibiotics.

>> If the earlier RA is treated the better, don't waste time with other

>> alternative methods. The O' Dell study, posted by Pierre, shows antibiotic

>> treatment within the first year yielding very positive results. Why wait

>> until the disease is stronger and more resistant to try it?...

>

> To unsubscribe, email: rheumatic-unsubscribeegroups

>

September 28, 2000

,

I have to agree with you. By all means, try the natural, alternative

methods along with the AP but I wouldn't delay getting on the AP because

the studies do show faster results with shorter-term illness. While

diet and supplements can help, I truly don't think they do the whole job

except perhaps for a lucky few.

Hugs,

a Peden

eson@... wrote:

>

> I have to disagree about trying other alternate methods before antibiotics.

> If the earlier RA is treated the better, don't waste time with other

> alternative methods. The O' Dell study, posted by Pierre, shows antibiotic

> treatment within the first year yielding very positive results. Why wait

> until the disease is stronger and more resistant to try it?...

September 28, 2000

Adriel,

Have you had success with alternative stuff? Are you now on the AP? I

assume you are since you're part of this list.

M.

September 28, 2000

OK I guess I missed that it was about antibiotics. I was looking for lists

about psriatic arthritis and researching all types of treatments. However, I

am no common p[atient who si just lead around by the nose of someone who

thinks they knonw about all medicine i.e. doctors. I also saw alternative

treatments discussed. I guess I've upset your little conceptualization that

what you are doing is the right way to go. I have been through sickness for

a long time and I ahve been on all the western garbage and that is just what

it is. Fine I guess I'll unsubscribe. As far crippling I am pretty much as

crippled as you can get being affected with Psoriasis 99% and Psoriatic

Arthritis in every joint and can't do much of anything. I had thought baout

going on something western but, I knwo ti will only be a temporary fix not

dealign iwth the true cause of the illness. My comments are not inaccurate

they may disagree with yours but, not necessarly inaccurate. I never said it

was a cure but, I also know that anti-biotics although you think are the

cure will eventually back fire. Thus is the way of most westerns meds.

If it makes you happy great but, at least be realistic about it. Guess this

is goodbye. You may all do a little dance now. it still won't cure you.

Delusions are just sad.

> From: a Peden <paula.peden@...>

> Organization: @Home Network

> Date: Thu, 28 Sep 2000 21:23:14 -0600

> Adriel Preger <azure@...>

> Cc: rheumaticegroups

> Subject: Re: rheumatic son with newly diagnosed arthritis

>

> Adriel,

> So, if you're so anti-antibiotics, why are you subscribing to a website

> devoted to treating rheumatic illnesses with antibiotics? As far as

> studies go, studies have also come out showing the tremendous benefits

> that have been demonstrated using antibiotics to treat our illnesses,

> particularly with respect to slowing joint destruction. Since many of

> us have very aggressive disease, the concern about eventually being

> crippled, or worse, is very real and something we much address. As I've

> said before, if you can get relief simply through diet and supplements,

> then great but I'm sure if you poll the majority of this group, myself

> included, you'll find most of us have tried many of the recommended

> supplements and dietary changes but have still found our illnesses

> continuing to rage. Remember, the course of these diseases is very

> individual and what works for some people may not work for everyone. I

> think you will also find many of us find benefit from some of the

> alternative stuff while continuing on antibiotics so I take exception to

> your statement that taking antibiotics will cancel out the effects of

> alternatives. There also can be side effects to some alternative

> treatments so your statement on that is also incorrect. The key is to

> weigh out the potential risks and benefits of any treatment, or lack

> thereof, and decide what is right for you. That being said, however,

> the purpose of this list is to provide support for people who have

> chosen to treat their rheumatic illnesses with antibiotics and I'm sorry

> to say, I feel your inaccurate statements are counterproductive,

> particularly for new members who are just learning about this

> treatment. Just my humble opinion.

> a Peden

>

> Adriel Preger wrote:

>>

>> If you get on the antibiotics you will ruin any affect the alternative stuff

>> can do. At least at the same time. Stduies come out every other week that

>> something that was so great for you is now horrible. Now you could say the

>> same tings about alternative medicine the main difference is there is not a

>> list of 50 million side effects. This is your tip that your body doesn't

>> like it.

>> _adriel

>

> To unsubscribe, email: rheumatic-unsubscribeegroups

>

September 28, 2000

Wow. I saw that one coming as I read the postings on this. I totally agree

with a since, as noted, the purpose of this list is to provide support

for people who have chosen (or are seriously considering) antibiotics for

rheumatic illnesses. Intensely negative statements made against AP are

counterproductive to the intent and spirit of this group.

I am extremely grateful for the information and support gained from this

group which helped me to finally get my life back. From this group and Road

Back Foundation I learned about the AP, the FACTS, the studies, the research.

I found Dr. Trentham thanks to the Road Back Foundation and this group. I

was bedridden and in agonizing pain for nine months of going to dr. after

dr., poisonous treatment after treatment. Antibiotics are the only thing

that really helped me and I thank God for it.

Sorry, but anyone who does not have a genuine interest in the AP should

consider another website.

Babs

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

200 mg. Minocin

112 mcg. Synthroid

2 mg. Hytrin

Mestinon

Vits. & Misc. Suplmts.

September 28, 2000

Adriel,

This is alternative. Most mainstream doctors won't even acknowledge the

efficacy of antibiotics for arthritis. I think most of us have been the

" Western " route and have found, for the most part, that that is a temporary

fix. In my case, it almost killed me.

I, personally, am very much aware of a whole foods diet and yeast. That is

just something that I will have to deal with simultaneously.

There are many, many, testimonies of people who are almost healed or have

incredible improvement. Please keep an open mind about this.

I hope the very best for you, whatever your decision.

Carol

September 28, 2000

Adriel,

So, if you're so anti-antibiotics, why are you subscribing to a website

devoted to treating rheumatic illnesses with antibiotics? As far as

studies go, studies have also come out showing the tremendous benefits

that have been demonstrated using antibiotics to treat our illnesses,

particularly with respect to slowing joint destruction. Since many of

us have very aggressive disease, the concern about eventually being

crippled, or worse, is very real and something we much address. As I've

said before, if you can get relief simply through diet and supplements,

then great but I'm sure if you poll the majority of this group, myself

included, you'll find most of us have tried many of the recommended

supplements and dietary changes but have still found our illnesses

continuing to rage. Remember, the course of these diseases is very

individual and what works for some people may not work for everyone. I

think you will also find many of us find benefit from some of the

alternative stuff while continuing on antibiotics so I take exception to

your statement that taking antibiotics will cancel out the effects of

alternatives. There also can be side effects to some alternative

treatments so your statement on that is also incorrect. The key is to

weigh out the potential risks and benefits of any treatment, or lack

thereof, and decide what is right for you. That being said, however,

the purpose of this list is to provide support for people who have

chosen to treat their rheumatic illnesses with antibiotics and I'm sorry

to say, I feel your inaccurate statements are counterproductive,

particularly for new members who are just learning about this

treatment. Just my humble opinion.

a Peden

Adriel Preger wrote:

>

> If you get on the antibiotics you will ruin any affect the alternative stuff

> can do. At least at the same time. Stduies come out every other week that

> something that was so great for you is now horrible. Now you could say the

> same tings about alternative medicine the main difference is there is not a

> list of 50 million side effects. This is your tip that your body doesn't

> like it.

> _adriel

September 28, 2000

In reference to 's Peden's comments:

I totally agree. If the appropriate treatment

is not started in arthritis patients young and

old, joint destruction and posssibly internal

organ complications can happen. The doctor (s)

at Mayo Clinic told me that if I had not gotten

started on AP and predisone, that by now I would

have lung involvement; damage to the lung. Rheumatoid

and other types of arthritis can play havoc with

the person's organs as well as joints. Some alternative

medications have affected me: heart palpitations, and

anxiety, and nervousness, I know that kids with JA do

not need that problem either. So stay with AP, it is

our best choice. And keep up with the blood labs.

Martha

>From: a Peden <paula.peden@...>

>Adriel Preger <azure@...>

>CC: rheumaticegroups

>Subject: Re: rheumatic son with newly diagnosed arthritis

>Date: Thu, 28 Sep 2000 21:23:14 -0600

>

>Adriel,

>So, if you're so anti-antibiotics, why are you subscribing to a website

>devoted to treating rheumatic illnesses with antibiotics? As far as

>studies go, studies have also come out showing the tremendous benefits

>that have been demonstrated using antibiotics to treat our illnesses,

>particularly with respect to slowing joint destruction. Since many of

>us have very aggressive disease, the concern about eventually being

>crippled, or worse, is very real and something we much address. As I've

>said before, if you can get relief simply through diet and supplements,

>then great but I'm sure if you poll the majority of this group, myself

>included, you'll find most of us have tried many of the recommended

>supplements and dietary changes but have still found our illnesses

>continuing to rage. Remember, the course of these diseases is very

>individual and what works for some people may not work for everyone. I

>think you will also find many of us find benefit from some of the

>alternative stuff while continuing on antibiotics so I take exception to

>your statement that taking antibiotics will cancel out the effects of

>alternatives. There also can be side effects to some alternative

>treatments so your statement on that is also incorrect. The key is to

>weigh out the potential risks and benefits of any treatment, or lack

>thereof, and decide what is right for you. That being said, however,

>the purpose of this list is to provide support for people who have

>chosen to treat their rheumatic illnesses with antibiotics and I'm sorry

>to say, I feel your inaccurate statements are counterproductive,

>particularly for new members who are just learning about this

>treatment. Just my humble opinion.

>a Peden

>

>Adriel Preger wrote:

> >

> > If you get on the antibiotics you will ruin any affect the alternative

>stuff

> > can do. At least at the same time. Stduies come out every other week

>that

> > something that was so great for you is now horrible. Now you could say

>the

> > same tings about alternative medicine the main difference is there is

>not a

> > list of 50 million side effects. This is your tip that your body doesn't

> > like it.

> > _adriel

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September 28, 2000

Adriel,

I'm not saying you have to buy into everything that is said on this

list. What I am saying is that as members of this group, we all have a

responsibility to try to be accurate about the messages we send. There

is a lot of discussion about alternative medicine on this site because,

as I said before, and contrary to what you seem to think about this

group, none of us is thrilled about what the majority of traditional

doctors have wanted to do to us so we've sought out many alternatives.

Our common thread, however, is our belief in the theory behind the AP

treatment and our determination to help each other learn more about it

so we can get the best results possible. It is a valid, safe treatment

so, therefore, yes, I felt your comments were counterproductive. I also

fail to see how making rather rude, inflammatory statements are in any

way helpful but despite that, if you want to continue to be part of the

group to correspond about the various alternative therapies also being

tried, then I'm sure you would be more than welcome. If, however, you

continue to make inaccurate, confusing statements, expect to be

challenged on them.

a Peden

Adriel Preger wrote:

>

> OK I guess I missed that it was about antibiotics. I was looking for lists

> about psriatic arthritis and researching all types of treatments. However, I

> am no common p[atient who si just lead around by the nose of someone who

> thinks they knonw about all medicine i.e. doctors. I also saw alternative

> treatments discussed. I guess I've upset your little conceptualization that

> what you are doing is the right way to go. I have been through sickness for

> a long time and I ahve been on all the western garbage and that is just what

> it is. Fine I guess I'll unsubscribe. As far crippling I am pretty much as

> crippled as you can get being affected with Psoriasis 99% and Psoriatic

> Arthritis in every joint and can't do much of anything. I had thought baout

> going on something western but, I knwo ti will only be a temporary fix not

> dealign iwth the true cause of the illness. My comments are not inaccurate

> they may disagree with yours but, not necessarly inaccurate. I never said it

> was a cure but, I also know that anti-biotics although you think are the

> cure will eventually back fire. Thus is the way of most westerns meds.

> If it makes you happy great but, at least be realistic about it. Guess this

> is goodbye. You may all do a little dance now. it still won't cure you.

> Delusions are just sad.

>

September 29, 2000

Adriel wrote:

> The only problem with this is that it does not help the body fight for it

> self.

There are precautions you can take when on antibiotics. Principally, making

sure you eat healthily, and take in plenty of probiotic stuff (natural

yoghourt, for example - or better still get some kefir grains). This helps

keep the balance in the gut right - as far as is possible when on AP, and

should avoid most problems normally associated with antibiotic use

I should add also that whilst antibiotics may not help the body fight for

itself, they do not hinder the body's immune system either - as far as I am

aware. I'm sure someone will correct me if I'm wrong.

September 29, 2000

I agree with a. It seems from what I've read and heard, children are

especially amenable to antibiotic treatment, and the sooner you can get them

started, the better the outcome.

If this were my child, from all I've read over the past year, I'd get him on

antibiotics with an experienced AP doc right away.

Jean