Bev

[Guest guest]

That is really weird . She'll have to unsubscribe or she'll keep

getting mail.

Bev

>

> Hi Bev,

> I got a note from Kathleen too and I didn't write her a thing! Somehow

she

> must have subscribed to the list and the messages are coming through and

> she thinks we are writing to personally to her.

>

>

[Guest guest]

I have a cell phone for her if you wanna zap me offlist

[] Re: News alert (CSI) -

Has anyone heard from Beverly?

-

[Guest guest]

I've never heard that methotrexate can cause cancer. It used to be used

in the treatment of cancer, in much higher doses than used for RA. I

had breast cancer in 2001, and continued taking methotrexate during

radiation treatments. I'm not saying that was a good thing, but it was

the only choice of medication for RA that I had at the time. What I am

saying is that you shouldn't be afraid to take methotrexate because

you've had breast cancer. Sue

On Monday, June 27, 2005, at 02:48 PM, Beverly Schmidt wrote:

>

> They wanted to put me on methotrexate but I had breast cancer in 2000

> and this can cause cancer

[Guest guest]

Bev:

Have you tried any of the patient assistance programs

for various medications? They are there to help those

patients without insurance and with low income to get

the meds they need. I am sure that and a

could post some - you can also look them up on the

internet under patient assistance programs for

rheumatoid arthritis - there are quite a few that

might be of help to you. Sorry to hear that you have

so much pain and the doctors were such jerks. It's

wonderful that your sister and her husband have given

you a home, and I hope that they also give you the

support you need emotionally. It's hard sometimes for

family and friends to understand what we go through,

but know that you always have us and we are always

here for you.

Kathe in CA

--- Beverly Schmidt <baschmidt@...> wrote:

> Hi Kathe,

> I just joined the group over the weekend and getting

> the e-mails right and left. I got RA in 1985 and is

> was in my hands and wrists. It has completely taken

> over my life. I have trouble taking meds and when

> I was first trying to find help they won't listen to

> me and when I finally couldn't keep an appt. they

> send my meds for my stomach. He did not listen to

> me and so went back to my family doctor and he won't

> listen so I just toughed it through with motrin and

> aspirian. Then they but a coating on the aspirian

> and couldn't take it anymore and the motrin was

> making me so sick to my stomach, I couldn't hardly

> more around. My doctor finally retired and by then

> was down to 89 lbs. and could hardly move let alone

> eat. I got a lady doctor and she got me on low

> doses of prednisone and gradually increased the

> dosage. I am still on the prednisone as 5 mg a day

> will keep most of the pain away but it has not

> stopped the damage to my fingers, elbow, and bones,

> and the teeth that bother me day and night! They

> wanted to put me on methotrexate but I had breast

> cancer in 2000 and this can cause cancer so did not

> want to take it and they rheumatologist won't take

> me off the prednisone and he couldn't explain to me

> what was happening with my teeth. I am still on

> the prednisone everyday and have been since 1995 and

> have people concerned about this but my doctor tells

> me to continue. I am trying to go to 2.5 mg. every

> other day and 5 mg the other days. That helps me

> enough in the summer. In the winter time then I

> have more pain but I just can't take a lot of meds

> as have had ulcers in the past. I am on disability

> and can't get medicaid as made too much money back

> in the 80's. Just wanted to know what others have

> done. I live with my sister and brother-in-law as

> couldn't afford to keep the house I lived in on the

> disability and couldn't work anymore. My mood

> swings are sometimes bad and it is causing problems

> in my everyday life. I have moved away from my home

> town and have never adjusted to it. Thanks Bev

> Re: [ ] Roxanna

>

>

> Hi Roxanna:

>

> You have come to the right place to find support and

> information - we have all been where you are now,

> and

> I still have days like that, so we truly do know

> what

> you are going through. The people in this group are

> like family and I know I can always come here in my

> darkest days and find support. What you are

> currently

> going through is very familiar to all of us. Do you

> have family or friends that can help you with things

> right now?

>

> I have been diagnosed with RA and Fibro now for six

> years. It is very difficult to get diagnosis at

> times, and then the search for the correct

> medication,

> combination of medications, begins. Are you on any

> medications at this time? You need to be on pain

> meds, at the very least, so that you can get some

> relief while waiting for the blood work to come

> through.

>

> When I initially went in with hands red-hot, swollen

> to twice their normal size, and severe pain, my

> doctor

> put me immediately on Prednisone for the pain and

> inflammation, and Motrin, while we waited for blood

> work. I was RA positive and she began me on a DMARD

> (disease modifying drug)too. Since then, I have

> been

> on many different medications, and am currently on

> Methotrexate, Enbrel, Mobic, Trazadone, and Ultracet

> for the RA/Fibro. I have good days and bad days,

> but

> I am still able to do most of what I want to do,

> just

> at a slower pace.

>

> Yes, there is light at the end of the tunnel, but

> finding the right meds for you can take a bit of

> time,

> and all the meds take time to build up in your

> system

> before you feel any effects - during the time I have

> had to change medications, and was in a lot of pain,

> I

> would be given Prednisone to get me through. It's

> not

> a drug you want to take for a long time, but for the

> short run, it can be a really big help.

>

> You need a doctor who is aggressive in treatment -

> because the first few months/years after diagnosis

> are

> the most important in finding medications that will

> help slow the progression of the disease. If your

> current doctor is reluctant to treat your pain and

> symptoms, find another. You need to be pro-active to

> fight these diseases. You will find out a lot of

> great information here, sometimes I find out things

> here even before my doctor does. Our moderators,

>

> and a, are great.

>

> It's hard to cope with the fact that you can't do

> things you used to take for granted, and not know

> what

> the future holds, and we all have been there.

> Please feel free to post anytime, vent all you want,

> we're always here for you.

>

> Hope this has helped - I sure rambled on did't I?

> lol

>

> Kathe in CA

>

>

>

> --- silvervistasilvermine

> <silvervistasilvermine@...> wrote:

>

> > Hi,

> >

> > I came across this site and joined looking for

> > support and advice to

> > my recent condition I have been stressing over.

> > It's been a little

> > over 6 weeks from onset, have had 1 visit with a

> RH

> > Doctor. My

> > condition has been getting worse and I'm a bit

> > freaked out about it.

> > Doc said fibromylgia and am having more blood work

> > for RA. I

> > glanced over a few past postings and what stuck

> out

> > to me was the

> > finger flipping. That has started with my hands

> in

> > the last couple

> > weeks or so, ring and pinkyfinger first on the

> > lefthand and now on

> > the right also. I have pain I cannot imagine,

> > stiffness in

> > shoulders, hips, knees, & anckles and my hands are

> > the worse and I

> > wake up as if my hands have been stuck as if I've

> > been hanging on

> > the monkey bars for hours. Knees kinda stuck and

> my

> > brain is not

> > accepting this very well. I panic because I can't

> > move or get out

> > of bed for a while and I have to use my forearms

> to

> > lift myself up

> > or roll back and forth on my hips to contort

> myself.

> > I'm having

> > problems opening drink bottles and other things.

> Do

> > I sound

> > familar? Would appreciate correspondence and

> > advice. Starting to

> > feel like I might have mad cow (OT). Do things

> get

> > better? Thanks

> > for any imput.

> >

> > Roxanna

> >

> >

> >

> >

> >

>

>

>

> Kathe in CA

>

>

> __________________________________________________

>

[Guest guest]

Hi Bev,

I wish you the best with antibiotic therapy! I have been on

minocycline just over two weeks and am starting to feel a positive

effect. (I respond quickly to DMARDs.) Yesterday I noticed that joint

tenderness in my hands had subsided. I also needed to tighten the

laces of my tennis shoes. I'm thrilled! The first few days I was on

the med I felt a bit rough, which is common, I hear. I also got a

yeast infection right away, but successfully treated it with OTC

medicine. After having had liver problems from two past medicines, it

is a relief to be taking something that doesn't require blood

monitoring.

Sierra

>

> 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

>

>

>

>

>

>

>

>

[Guest guest]

Hi Bev,

Thank you so much for all your kind words...same to you.. keep up the good work! I'm excited about this light therapy. So glad you're seeing improvement. Did I miss what it's called? I haven't gone through all the e-mails yet. Yes, I'd like to know if anyone does that here. I would like to go see Dr Kolb (in the future) cause traveling that distance right now is not in the picture. But I have it on a back burner... it's hope... and possible help. She's about a 7 hour drive from me. I went to a different surgeon to remove them. I'm going to make some inquires next week about the records. I can't tell you how many surgeons I went to to have them explanted.. none would do it without replacing them. Such arguments. I have all my medical records for everything except that! Figures doesn't it???

We all have to fight.. I believe the answers are out there for us. God grant us the strength to find them

Hugs,

There would be nothing to frighten you if you refused to be afraid. Gandhi

From: "moodynomad@..." <moodynomad@...> Sent: Fri, October 15, 2010 1:15:40 AMSubject: Re: and Bev

-i just cried when I read your message. It hurts me deeply when such a wonderful person as yourself couldve maybe been more recovered by now. did you have them removed by your original ps? What state do you live in? maybe there IS hope...even if you can't have surgery..I'm serious. Like the light therapy-we did another 4 minutes today...it knocked out the bottom part of the breast but not the top. The fact is-with enough treatments it can be killed, if in case there is mold stuck safe inside your chest. I have so much faith for you! And I love all your ideas for my future in still doing hair. And I would totally have my husband clean your bathrooms!! And he's a good dog washer too .That makes sense about the deodrant. Sweet dreamsXo. Keep fighting sisterBev

[Guest guest]

Thanks Dede! know anyone there to hang out with?

>

>

> Ah...many, very happy with her !

> I am happy for you !

>

>

> When the power of love

> overcomes the love of power

> the world will know peace.

> ~ Jimi Hendrix

>

>

>

> Bev

>

>

>

>

> I emailed you an invitation to a Dr. Feng capsulectomy party, let me know if

the date works for you. I asked what day we could both get in.

>

>

>

[Guest guest]

No, I sure dont......from what I remember the girls

that have used her travelled to see her.........

When the power of love

overcomes the love of power

the world will know peace.

~ Jimi Hendrix

Bev

>

>

>

>

> I emailed you an invitation to a Dr. Feng capsulectomy party, let me know if the date works for you. I asked what day we could both get in.

>

>

>

[Guest guest]

Hi Bev,

I had the implants removed, but not sure about the capsules. I don't seem to have a copy of the surgical report. I haven't' done it yet (almost afraid to know) but need to go through channels to get a copy of this which was explained in 1994. He did say I had a lot of silicone in my muscle that he couldn't get out and I was "loaded" were his words. I didn't know at the time about making sure of all this. Anyway, you need to have hope. I got a lot better whatever the heck is still inside me with a rigorous detox protocol and really doing everything I could the environmental docs told me to. As bad as I seem now you should have seen me before! Everything is relative. I have a lot of problems for sure, but I'm not in that particular dark place.

I think he probably didn't take out the capsules (that's my guess) because of how severely ill I became. I am not a candidate for surgery now. Because I did manage a better level of health despite the silicone situation, I do believe you can get much better, but unfortunately it is such hard work, and when sick is so difficult. Takes all the strength you have Bev.. detox those chemicals out of your body somehow... supplements, some kind of sweating was/is very helpful to me, and eating healthy. even the bath soaks with epson salts or the clay if you can do it..Everything helps.. but healing is subtle... so it seems slow.

Have you had any immune function tests lately and also heavy metals as in a hair analysis or something?

Hugs and hang in...

Hugs,

There would be nothing to frighten you if you refused to be afraid. Gandhi

From: "moodynomad@..." <moodynomad@...> Sent: Sun, November 14, 2010 7:14:20 PMSubject: Re: any help with a stubborn husband?

Wow, thanks for sharing that with me . Doesn't make me happy that you have similar trials :(I will do my best for sure. I forgot, do you have everything out implants, capsules? I'm just wondering if I'm going to be brought down every time I'm exposed to mold because the capsule tissue is susceptible or something...HugsBev Sent via BlackBerry by AT & T

From: Natural Medicine <natmedgal@...>

Sender:

Date: Sat, 13 Nov 2010 21:16:11 -0800 (PST)

< >

Reply

Subject: Re: any help with a stubborn husband?

Bev,

My veins are bad also. I've had so many people tell me the same thing and also been through h*** trying to get my IV's and blood...etc. I'll tell ya, what we do to stay alive! I'm sorry about your husband, I hope in time he "gets it". My girlfriends husbands doesn't believe in alt med, but as of late he at least is "accepting" what she does. He punishes her by being in a bad mood or nasty, etc... so she has to live with that when she asserts herself...and so does mine btw. So, I know it's awful to live with, but when it comes to staying alive and fighting for your life, I guess you just have to do what you must. Don't know what's wrong with these guys without getting out all my psychology books, giving them a dx, and wishing I could do the "betwtiched thing as in wiggle my nose" and make it all go away

I've said to my husband many times this was supposed to be a partnership with respect. Hang in there and do the best you can. I'm glad you have your dad.

Hugs,

There would be nothing to frighten you if you refused to be afraid. Gandhi

From: "moodynomad@..." <moodynomad@...> Sent: Sat, November 13, 2010 9:39:46 PMSubject: Re: any help with a stubborn husband?

No that's why I asked, its not offensive at all-i so appreciate the support. I like what you said about me being the wife not the child. And you're absolutely right, he's not respecting my intellect because his doctor friends have got in his head...one being another ego guy. Its almost making me bitter and I need to let that go too. Anyway thanks for the support. I can't drive either so I feel for your friend. I'm so lucky I hve my dad who drives me to my holistic doc once or twice a week. He's behind me 100% any way I can get better and I'm grateful for him. That's what I would love to be able to say about my husband and it makes me sad I can't. HugsBev Sent via BlackBerry by AT & T

From: Natural Medicine <natmedgal@...>

Sender:

Date: Sat, 13 Nov 2010 14:14:21 -0800 (PST)

< >

Reply

Subject: Re: any help with a stubborn husband?

Hi Bev,

I have a girlfriend in the exact same predicament you are. It's a real problem because he won't help her with any natural treatments or going to those doctors. She can't drive right now. You asked for help and opinions, so I'm giving you mine. I hope it's not offensive, surely not meant that way only to help. But your husband is not respecting your intellect or choices, and he needs to do so. You are his marriage partner not his child. You need to save your life no matter what his opinion is. His rigidity and lack of enlightenment is your undoing. You must continue to pursue alternative medicine, all seem to agree including me in working with a doctor of Environmental Medicine, or one who has a very good understanding of it. I use environmental and holistic. This is not negotiable about the course you need to pursue to save your life. He may choose

to disagree, but that's where his responsibility in offering his opinion ends.

Of course you don't need the stress. No question, you can tell him that too. But you will not find the answers or help you seek in mainstream medicine to my knowledge.

Hugs,

There would be nothing to frighten you if you refused to be afraid. Gandhi

From: bebe444girl <moodynomad@...> Sent: Fri, November 12, 2010 9:55:01 PMSubject: any help with a stubborn husband?

hey girls- just having a bit of a battle at home and wondered if any of you have had a similar experience....my husband is a traditional medicine die hard. He does not "believe" in alternative medicine is what he told me, and it has caused Many Many nasty arguments. in fact we have never argued until now, about this subject. He says because i'm still sick, i need to go back to the medical doctors because it might be something simple we're missing. well i appeased him and he made me an appt last night, so we went, and after giving a Brief description of what i'd gone thru the doc said, well i'd like you to write down your entire story and fax it to me so i can bring it up at this month's 'complicated cases' and we can discuss where we'll go from there, but we'll get to the bottom of this and fix you!" after i asked him if he'd heard of breast implant illness or mold toxicitity, he replied, no, and then said to me, did you just hear what i said a moment

ago? i met you 10 minutes ago and don't know your history and obviously the path you've been on isn't working for you, so like i said, i'll discuss it with a group of doctors and we'll go from there. then he asked what 3 symptoms i'd get rid of if i could.. and i replied, i just want to find the root of the problem (again, feeling like i'm trying to appease my husband but also feeling very attacked) but he asks again so i said, uhhh heart palpitatioins, muscle weakness and anxiety, so he says, ok well i'll set up a heart test for you to take, wouldn't you be happy if all you needed was an electric shock to your heart and be healed? my mouth was on the floor. he asked again, would you be happy if it was as simple as that?? as he clasped his hands and smiled. i replied, "yep" and walked out the door....and guess what, my husband and i are still fighting. the doctor even sait to me after looking at my chart, 'wow, you have had the million dollare work up

haven't you?" i have enough of a battle right now and I begged him to let go of me going thru a million more kaiser tests, and when i cry to him telling him i just need his support on my journey, he gets angry and says "this is a marriage, i get a say in your health too!" and it never ends...is there any advice? i physically and mentally can't deal with this right now and he obviously doesn't care...but on the other hand, he cares too much right? cause he's a man that wants to FIX things....