alternate therapy, Ebony's postings

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Hi all,

I won't be posting for awhile because I'll be in a different part of the

state, without access to a computer, hopefully starting low dose, long

term antibiotic treatment for my Polymyalagia Rheumatica. I've been

cautioned that not everyone is a candidate, and that around 20% do not

have success. I intend to ask lots of questions & keep copious notes,

which I may or may not share with the list.

The longer I post, the more I feel hostility from some on this list to

anything non-conventional, which I think is unfortunate. The

antibiotics in question are /conventional, / it's their use that's

/unconventional/. I know there are a lot of quacks out there and people

trying to make their fortune off of people who are very ill and

desperate to try anything they think will work. I assure you I am not

in that group. I'm just looking for something which will make ME well

again, and I was hoping to share what I learn and experience with

others, in hopes it would help them. I'm a person who believes in the

free exchange of ideas; I know I'm always learning from someone else.

Even if I don't agree with someone's ideas, I'm interested in hearing them.

Dr. Sinnott has treated hundreds and hundreds of patients over decades

with this /low dose, long term/ antibiotic treatment. He has /never/

had a liability suit filed against him. How many Drs. using

conventional methods can make that claim? The old-time antibiotics that

he uses,/ low dose/, /long term/, not just short term - have minimal

side effects, if any. How many conventional drugs can make that claim?

He contends that antibiotic therapy has to be started early in the

progression of the disease in order to stop its progression and the

destruction it eventually causes. He also contends that conventional

drugs/treatments treat the /symptoms/ of a disease while it still

progresses, but that low dose, long term antibiotic therapy treats the

/cause and in 80% of the cases he has had, arrests the progression of

the disease in question./

The pharmacy sheet I get with Prednisone has several paragraphs listing

possible side effects. Then at the bottom it says: " The information in

this leaflet may not cover all possible side effects, interactions with

other drugs and foods, or precautions... " Neither these precautions nor

my Dr. prepared me for /addiction/ to and w/ithdrawal/ from

Prednisone!!! I'm still on 10 mg./da, so I may have more withdrawal to

go through.

If the alternate therapy that I'm just asking people to learn about -

not necessarily to try - had the /negative/ side effects of conventional

therapy, I can understand why there would be hostility.

Maybe the people who are doing well don't post to this list, but from

what I'm reading, many of those who /are/ posting have 1) been

misdiagnosed, 2) have tried conventional methods which have serious side

effects for them and don't seem to be arresting the progression of their

disease. My heart goes out to them!

example:

On today's list Ebony posted: (Ebony, I read that

Rheumatology is or was a declining profession. Anyone know if this is true?)

[ ] Will most likely start thr orencia, info and web site

>> hi,

>>

>> I haven't posted in a few days. i am contmplating the orencia only concern

is them finding a vein consistently. seems to be huge problem lately. however

i don't think a pic line or any other long term line is something I would be

interested in, so will see how it goes.

>>

>> i don't think promoters will say all about their product and since some of

us, me included, are more sensitive to meds (hives, facial rash, body rashes,

blurred vision, increased joint pain, interaction with current meds, etc.) than

others I have left a web page listing side effects as well as benefits for those

having a hard time finding the right therapy as I am. There is a lot of info

there and somehow I always end up there when researching RA.

>>

>> Will keep you posted on orencia results. Hang in there. Peace and healing.

Ebony

>>

>> http://www.medicinenet.com/abatacept/article.htm

>>

>> SIDE EFFECTS: The most common side effects include headache, upper

respiratory tract infections and nausea. Because abatacept depresses the immune

system it reduces the body's ability to fight infection. Therefore existing

infections may worsen or new ones may develop. Patients may also experience

infusion related reactions such as dizziness, headache, hypotension or

hypertension, nausea, wheezing, rash, nausea and shortness of breath. The most

serious side effects are infections and cancer.

>>

a second posting today by Ebony:

11. Re: Alternative treatment

Posted by: " Ebony " stillbreathing29@... stillbreathing29

Date: Mon Oct 9, 2006 6:56 am (PDT)

She's right. We aren't getting better. When I was first diagnosed in 1996, the

goal was remission, now all i see is to slow the disease. If we were happy with

the results we wouldn't need to come here for support. We would be out there

living the lives we started. So I say support all and not just the ones on

traditional meds. Now, that's not to say abandon modern medicine but why should

we trash alternative medicine either or those wanting to try it either.

By all means newcomers take the traditional route and I think that's why we have

the friction here. I think some are afraid the newcomers won't take the

traditional route. So newcomers please take the traditional route and hopefully

if you are lucky you can find a doctor who will treat you individually and not

try to give you a one regimen fits all approach. One who will listen to your

complaints and not brush them off. I complained about my hips to 2 different

rheumatologist long before I lost use of them, one gave me more

prednisone (it takes 60 mg for me to feel relief) and corticosteroid injections

and the other told me it was my knees causing the mechanical problem not my hips

so proceeded to give me steroid injections in my knees and now this new one says

to replace them.

What happened to saving them in the first place? bone density scan - - maybe

meds to protect the bones, other things should have been done to treat my

relentlessly painful hips. Arava was added by one with

hellacious side effects and MTX was added by the other. No relief. the hip

continued to worsen.

It's been 11 years and I am sitting here with multiple joint damage, my

complaints fall on deaf ears at the doctor's office (my painful skin, severe

edema, abdominal pain, etc.) or am usually given more prednisone. No pain

medicine is prescribed when I ask for pain meds only given Darvocet which does

nothing but keep my liver enzymes rlevated and prednisone is the reason I need

both hips replaced. the prednisone didn't keep me working nor does the MTX or

Enbrel or Remicade or Humira or Kineret or anything else I have been given and

now Coumadin interferes with me taking ibuprofen a painkiller and many other

pain meds, so for me the benefits did NOT outweigh the risks.

And I think that's what it comes down to --- DO the benefits outweigh the risks

for YOU personally, you can't decide for anyone else. All we can do is support

their decisions or say nothing. One regimen

does not fit all. I wish it did. Does it mean not to at least try them. Of

course not. As you see I have tried many. I believe many are helped by the

traditional meds so I still support them as long as

others feel they are helped by them, and I also believe some are not helped and

for those who are not helped, stop blaming the victim. And I am not saying you

are blaming them but I have been reading some

very angry sounding support messages that really don't sound like support.

Let's support everyone traditional and nontraditional and maybe make suggestions

of things to keep trying or keep searching for

the right doctor therapy combo. And we must face it, rheumatologists are scarce

-- people are not becoming rheumatologists in vast numbers. the ones remaining

are overworked and overwhelmed so even if he started out a good one, doesn't

mean everyone will have a good experience with him. So newcomers keep searching

for the answers if the traditional treatment isn't working for you. try

another and another. if the doc is always too busy or doesn't listen and

you're worse find another and another. be active in your recovery. don't let

the disease get the best. and in the meantime while searching for your ideal

combo therapy, keep smiling. Keep living as much life as you can.

in peace,

Ebony