FMS

[Guest guest]

Hi ,

When the web page comes back up tomorrow, have a look at

www.rheumatic.org/fibro.htm for one person's successful treatment of

fibromyalgia.

Chris.

Hello group,

Can anyone give me some advice on FMS? My mother-in-law thinks that she

may have a mild case and would like some suggestions on things that you all

have found helpful in relieving the fatigue, sleeplessness, and muscular

aches and pains. THanks so much!

------------------------------------------------------------------------

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[Guest guest]

yoga, exersise, massage. no sugar, no coffee. Ambian to help sleep

In a message dated 6/6/99 1:42:08 PM Eastern Daylight Time,

LCARROLL@... writes:

> Can anyone give me some advice on FMS? My mother-in-law thinks that she

> may have a mild case and would like some suggestions on things that you all

> have found helpful in relieving the fatigue, sleeplessness, and muscular

> aches and pains. THanks so much!

>

[Guest guest]

Hi Agnes,

How wonderful to hear about your sister and her improvement, isn't she lucky

to have a caring sister who found this treatment for her. I do hope we will

see posts in the future regarding your improvement too<warm caring hug>

We do not have any doctors on our list for Denmark (nor Hungary) but we do

have one in Holland is that any good? However I do have on file some

information that I am ashamed to admit I have no idea where I got it from.

<memory - sigh!> The source will be reliable (was it you Chris?!), it's

possibly about 6 months to a year old but that hopefully won't matter.

The doctors listed below are associated with the American College for the

Advancement of Medicine that might be open to receiving information about

this therapy.

Good luck!!

hugs,

lisbeth

Here they are:

Kurt Christensen, M.D. (DIPL)

Fredenstorv 8-1

8000 Aarhus C

Acupuncture, chelation therapy, general practice, nutrition

Bruce P. , M.D. (P)

Sydtoften 35

8260 Aarhus

Chelation, general practice, nutrition, orthomolecular medicine,

preventive medicine

Joergen Rugaard, M.D. (D/C)

23 Kystvej

3050 Humlebaek

Claus Hancke, M.D. (DIPL)

Lyngby Hovedgade 17 1

DK-2800 Lyngby

Chelation, family practice, general practice, nutrition, osteopathic

manipulation, preventive medicine

Bo Mogelvang, M.D. (P)

Strandvejen 123-135

DK-2942 Skodsborg

Anesthesiology, cardiovascular, chelation, internal medicine,

nutrition, preventive medicine

Knut T. Flytlie, M.D. (D/C)

Gludsmindevej 39

DK-7100 Vejle

Allergy, acupuncture, auriculotherapy, general practice,

osteopathic manipulation, preventive medicine

Pierre Eggers-Lura, M.D. (P)

Furesoevej 141

DK-2839 Virum

Acupuncture, chelation, nutrition

rheumatic FMS

>From: " Agnes E. Winchell " <aewinchell@...>

>

>Dear Group,

>

>I started reading this support group's e-mail originally because my

>sister has RA and she started taking antibiotics with the help of

>Dr. Sorin in Romania, where she lives. I am very happy for her that

>she is getting better after about 6-7 months on AP. Thank God and the

>Internet that I could find out about the AP. I was surprised that AP

>is even recommended for FMS, what I have. I would like to hear more

>from those with FMS to see if I should start looking into this for

>myself.

>

>The main reason for this letter is that I have a dear friend in

>Denmark who is only 33 years old and already had both hips

>replaced because of RA. She is interested in the AP if she can

>find a specialist in Denmark where she works and has insurance. She

>might consider seeing a physician in Hungary if there is nobody in

>Denmark. I tried to find some information on finding a doctor but I

>had no luck on the Internet.

>

>Thank you so much for caring,

>

>Agnes

>

>>

[Guest guest]

Yep - I got it from the ACAM web site at www.acam.org - they have a search

facility for ACAM doctors all over the world. These doctors will often offer

antibiotics and other supportive therapies.

Chris.

<memory - sigh!> The source will be reliable (was it you Chris?!), it's

possibly about 6 months to a year old but that hopefully won't matter.

The doctors listed below are associated with the American College for the

Advancement of Medicine that might be open to receiving information about

this therapy.

Good luck!!

hugs,

lisbeth

Here they are:

Kurt Christensen, M.D. (DIPL)

Fredenstorv 8-1

8000 Aarhus C

Acupuncture, chelation therapy, general practice, nutrition

Bruce P. , M.D. (P)

Sydtoften 35

8260 Aarhus

Chelation, general practice, nutrition, orthomolecular medicine,

preventive medicine

Joergen Rugaard, M.D. (D/C)

23 Kystvej

3050 Humlebaek

Claus Hancke, M.D. (DIPL)

Lyngby Hovedgade 17 1

DK-2800 Lyngby

Chelation, family practice, general practice, nutrition, osteopathic

manipulation, preventive medicine

Bo Mogelvang, M.D. (P)

Strandvejen 123-135

DK-2942 Skodsborg

Anesthesiology, cardiovascular, chelation, internal medicine,

nutrition, preventive medicine

Knut T. Flytlie, M.D. (D/C)

Gludsmindevej 39

DK-7100 Vejle

Allergy, acupuncture, auriculotherapy, general practice,

osteopathic manipulation, preventive medicine

Pierre Eggers-Lura, M.D. (P)

Furesoevej 141

DK-2839 Virum

Acupuncture, chelation, nutrition

rheumatic FMS

>From: " Agnes E. Winchell " <aewinchell@...>

>

>Dear Group,

>

>I started reading this support group's e-mail originally because my

>sister has RA and she started taking antibiotics with the help of

>Dr. Sorin in Romania, where she lives. I am very happy for her that

>she is getting better after about 6-7 months on AP. Thank God and the

>Internet that I could find out about the AP. I was surprised that AP

>is even recommended for FMS, what I have. I would like to hear more

>from those with FMS to see if I should start looking into this for

>myself.

>

>The main reason for this letter is that I have a dear friend in

>Denmark who is only 33 years old and already had both hips

>replaced because of RA. She is interested in the AP if she can

>find a specialist in Denmark where she works and has insurance. She

>might consider seeing a physician in Hungary if there is nobody in

>Denmark. I tried to find some information on finding a doctor but I

>had no luck on the Internet.

>

>Thank you so much for caring,

>

>Agnes

>

>>

[Guest guest]

Hi Agnes,

If I have replied and now repeat myself excuse me. I have been away, and I

am trying to catch up. I have Chronic Fatigue Syndrome and probably also

fibromyalgia. I definitely have mycoplasma infection which was found in a

blood test using PCR. I am reading research that shows that about 70% of

fms and cfs cases have mycoplasma infections which are, we think, the same

pathogens which cause the arthritis problems. So....we are all related,

perhaps. Anyway, the antibiotics for 3 years have certainly helped me.

a Carnes

> From: " Agnes E. Winchell " <aewinchell@...>

>

> Dear Group,

>

> I started reading this support group's e-mail originally because my

> sister has RA and she started taking antibiotics with the help of

> Dr. Sorin in Romania, where she lives. I am very happy for her that

> she is getting better after about 6-7 months on AP. Thank God and the

> Internet that I could find out about the AP. I was surprised that AP

> is even recommended for FMS, what I have. I would like to hear more

> from those with FMS to see if I should start looking into this for

> myself.

>

> The main reason for this letter is that I have a dear friend in

> Denmark who is only 33 years old and already had both hips

> replaced because of RA. She is interested in the AP if she can

> find a specialist in Denmark where she works and has insurance. She

> might consider seeing a physician in Hungary if there is nobody in

> Denmark. I tried to find some information on finding a doctor but I

> had no luck on the Internet.

>

> Thank you so much for caring,

>

> Agnes

>

>

[Guest guest]

Hi Agnes,

There is absolutely no reason why you can't do both and you should! Your

immune system needs all the help it can get. I don't know about MSM. The

list you placed in your first sentence are all good things to take for fms,

but they will not substitute for the antibiotics if you have a mycoplasma

infection.

Best wishes,

a C.

>

> Hi Group,

>

> I read the treatment for FMS written by Ethel, using picnogenol,

> malic acid, magnesium, and some other vitamins. Did anybody try

> this? Please let me know. I have a prescription for minocin now,

> but I would like to try this first if it helps. Also I read about

> MSM. Does it help? It has sulphur in it and I might be allergic to

> it, but it would be good to know.

>

> Thanks a million,

>

> Agnes

>

>

[Guest guest]

Fibromyalgia = Lyme Disease.....there I did the math for the

experts.....:-)

Sheeze..6 million......scary, scary, scary....somebody better devise a

dependable test soon before the entire population is crippled and can't

remember their own names......

Debi

[Guest guest]

Fibromyalgia = Lyme Disease.....there I did the math for the

experts.....:-)

Sheeze..6 million......scary, scary, scary....somebody better devise a

dependable test soon before the entire population is crippled and can't

remember their own names......

Debi

[Guest guest]

Aisha:

{This was on another list - and I thought hmmmmmmmmmm now many of you

with FMS have joint inflammation, stiffness, fatigue and pain. If you do

have this can you please say so before I put my foot in my mouth! LOL}

I have FMS (recently diagnosed).....but it was dx. due to the muscle pain

and tenderness. I also have to joint inflammation, and stiffness, but

that is from the Lupus/Arthritis, the fatigue and pain usually goes with

both, so it is often hard to tell, which is the culprit.

Huggs

Marilyn

[Guest guest]

Dear ,

Hi from Australia. Yes I have Fibro and have been on the A.P. for 7 months. I tested positive for Mycoplasma Fermentans and looked at doing Nicolson's treatment, but I knew I would not cope with the high doses of anti-biotic. I have had C.F.S. and chemical and food intolerance for 22 years so I know I don't cope well with "normal" doses of any drug. That is why I went on the A.P. because I had heard of some people using this protocol and getting well. I am on such a low dose, 50mg. Minocycline Mon and Thurs. Even on this dose I have had fevers, joint pains, pimples, headaches, brain fog big time and many other symptoms. In the first few weeks I was having to sleep 3 hours during the day. I did not do any I.V's as these are hard to get in Australia and not many docs seem to be familiar with the protocol.

I am still herxing but the good thing is that you can go off the A.P. for up to 4 weeks without loosing any ground.

I rang a doctor in Texas named Byron as he had fibro so badly that he lost his medical practice. He went on the A.P. and is now back at work. From memory I think he was taking 100mg. Mino every day and his turning point came at 5 months.

I have heard of others on this list with F.M.S. who have got a lot better in the A.P.

Please feel free to ask any questions. I will help if I can.

Wishing you health,

Rosemary.

allrosy@...

rheumatic FMS

Is anyone on this list using abx to deal with FMS? I am using Nicholson's treatment, but he prescribes much higher doses than what I see on Brown's protocol for RA diseases. I was taking 1500 mg/Cipro a day and that was too much for me. I was herxing badly. Now I am down to 1000 mg/day and still doing very badly. Also, my wrists are starting to hurt, which is a sign my tendons may be affected by the Cipro. Are any of you on Cipro? How many of you did the initial IV treatment bf starting on the abx treatment? thx, B. Dommer Littleton, CO Look to God and Live To unsubscribe, email: rheumatic-unsubscribeegroups

[Guest guest]

<< I've also been told that prednisone does NOT help fibromyalgia and one

with FMS should not take it. So, I'm confused as to where you're info is

coming from, but still very interested. >>

I believe prednisone does, in fact, relieve symptoms of FMS. However, it's

too destructive of a drug to use for a disease that doesn't destroy

tissue/bone like other diseases, thus it's not used for FMS.

My aunt was given prednisone for FMS for several years and once they quit

prescribing it for that she was pretty upset. It was the only thing that

helped her.But they won't give it any more, and for good reason.

You're correct in that lab work doesn't usually reflect anything like the

rheumatic diseases usually do.

M.

[Guest guest]

Hi Ian

The lady in question is Adrienne , Here is her email address

adrienne.allen@...

Regards

Rattigan

>From: " Ian Sharpe " <Ian@...>

>Reply-

>< >

>Subject: FMS

>Date: Fri, 19 Jul 2002 17:27:09 +0100

>

>Can anyone advise who the current HR lady is at FMS?

>

>Thanks

>

>Ian

>

>---------------------

>Ian Sharpe

>ISOS Paramedic

>Tel. + 44 (0)705 0044 385

>---------------------

> " Fortitudine Vincimus - By Endurance we conquer "

>

>

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[Guest guest]

Thanks !

FMS

>Date: Fri, 19 Jul 2002 17:27:09 +0100

>

>Can anyone advise who the current HR lady is at FMS?

>

>Thanks

>

>Ian

>

>---------------------

>Ian Sharpe

>ISOS Paramedic

>Tel. + 44 (0)705 0044 385

>---------------------

> " Fortitudine Vincimus - By Endurance we conquer "

>

>

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[Guest guest]

thanks, Jan, that's kind of where I am at with it too, but I take 150mg at

night, and 150mg in the day (right at nap time)...

Carolyn Sunday

>

> Many thanks for the reply re: Klonopin

>

> Also, I was asked how the Carisoprodol was doing for me - (for FMS) - I know

that it lasts only a short time and when I tried it for daytime pain it was

pretty worthless for me. However, I take it (350 mg) at nite in combo with

Klonopin for sleep. so I dont really know how much the soma contributes, but I

keep using it, and am sleeping really well .

>

> fibberjan

>

[Guest guest]

Hi Jan,

I have FM too. For sleep I use doxepin (tri cyclate anti depressant) and it

works really well at a very low dose of just 10mg. The soma I find wears off so

quick and really only gives me a 3-4 hour window of effect at best.

I am hoping that once I go on LDN all that will improve.

hugz,

Carolyn S

>

> Elaine, i dont know if I thanked you for your good information - it is very

helpful. I am on the 3rd day of withdrawal from tramadolwhich is a painful

night mare, but the 3rd day is much better, and I will again be able to try LDN.

I tried it before and the good doctor informed me that tramadol had an opioid

receptor which is a no no with LDN. I also tried dropping the tramadol again and

gave up because of the pain. This was before posts were coming in about FMS and

that got me interested again, because i am hoping for the relief of the pain I

still have even with the tramadol.

>

> I don't recognize what you use for sleep at nite, but I use (for now)

klonopin and carisoprodol. I do not have the RA (?) to deal with. It is a

juggling of several meds for me as they wear off.

>

> Best wishes for your good health,

>

> Jan

>

[Guest guest]

I was wondering if anyone has noticed an incease in their fibro symptons

this winter and spring, I live in Ohio and am not sure if it is the

stupid weather this year, of if my Fibro is just getting worse. I have

had such good luck with Enbrel, that I hate to think it is starting to

not work as well as it did before, I hate to think about having to try

something different again.

Deb

[Guest guest]

Hi Deb. I have had a miserable past 2 months with my FMS. The pain is almost

intolerable, every day, no matter what I do. I hope it's the weather we've had

in Alabama and not progression of the disease.

>

wrote:

> >

> >

> > I was wondering if anyone has noticed an incease in their fibro

> > symptoms this winter and spring, I live in Ohio and am not sure if

> > it is the stupid weather this year, of if my Fibro is just getting

> > worse. I have had such good luck with Enbrel, that I hate to think

> > it is starting to not work as well as it did before, I hate to

> > think about having to try something different again.

> >

> > Deb

>