ra

January 17, 1999

Dear :

No, I never tried the combo you mentioned. I am allergic to sulfa drugs, but

did try Plaquenil with no success. Metho however did work for years, although

I did have to go to the highest allowable dose at the end - 50 mg. by

injection.

Unfortunately Arava has eaten a hole in my tummy, so it is nixed after only

eight weeks. I t had been working about 80%. Now I will go to Enbrel. I am

worried about the severe Psoriasis coming back on my right hand especially,

since it is so hard to type when it does.

Whatever happens is destined, I guess. Good Luck to you,

All my best,

September 30, 2000

chronic arthritis is a 'recognized' adverse reaction to Rubella by the

Vaccine Compensation Timetable.

lilian holm-drumgole wrote:

>

> Hello-anyone know anything abt a possible connection between vaccinations

> and Rheumatoid Arthtritis? I'm developing some symptoms of RA and wondering

> " where it's coming from " , doesn't really run in the family etc.

> Lilian

> _________________________________________________________________________

> Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com.

>

> Share information about yourself, create your own public profile at

> http://profiles.msn.com.

>

--

@...

***************************************************************

Any information obtained here is not to be construed as medical

OR legal advice. The decision to vaccinate and how you

implement that decision is yours and yours alone.

September 30, 2000

At 09:46 AM 09/30/2000 CDT, you wrote:

>Hello-anyone know anything abt a possible connection between vaccinations

>and Rheumatoid Arthtritis? I'm developing some symptoms of RA and wondering

> " where it's coming from " , doesn't really run in the family etc.

>Lilian

Yes, vaccines are definitely implicated in RA and other autoimmune

diseases. Rubella and Hepatits B vaccine for sure are associated as well

as others.

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

Sheri Nakken, R.N., MA

Vaccination Information & Choice Network, Nevada City CA

http://www.nccn.net/~wwithin/vaccine.htm

ANY INFO OBTAINED HERE NOT TO BE CONSTRUED AS MEDICAL OR LEGAL ADVICE. THE

DECISION TO VACCINATE IS YOURS AND YOURS ALONE.

Well Within's Earth Mysteries & Sacred Site Tours

http://www.nccn.net/~wwithin

International Tours, Homestudy Courses, ANTHRAX & OTHER Vaccine Dangers

Education, Homeopathic Education

KVMR Broadcaster/Programmer/Investigative Reporter, Nevada City CA

CEU's for nurses, Books & Multi-Pure Water Filters

March 27, 2002

I was wondering if I should be taking pro biotics regularly.....I have the

capsules(non dairy ones) and take them if I have a dodgy tummy or something,

but, should I take them regularly.....?

My mother has IBS and takes the Actimel or Yakult drink daily. It has more or

less gotten rid of any IBS symptoms for her which is great!

Anyway, now I know of the dairy free caps. should I take one daily? Anyone?

Suzie

March 27, 2002

I was wondering if I should be taking pro biotics regularly.....I have the

capsules(non dairy ones) and take them if I have a dodgy tummy or something,

but, should I take them regularly.....?

My mother has IBS and takes the Actimel or Yakult drink daily. It has more or

less gotten rid of any IBS symptoms for her which is great!

Anyway, now I know of the dairy free caps. should I take one daily? Anyone?

Suzie

June 9, 2002

Dear m,

Your symptoms are almost exactly those that I experienced in September

1999, except that my pain started in the shoulders, then moved to the left

knee and finally to the right knee. I too felt pain in the muscles rather

than in joints. I too was diagnosed with RA -- but I now question this

diagnosis. I went through a treatment which started with Prednisone, then

moved on to Plaquenil and Methotrexate, and from there to Celebrex and

Vioxx. In May 2001, I was told about the AP, and was able to get my first

prescription of minocycline one month later.

At this point I have taken control of my medications and am off all

prescription drugs except for the mino (100 mg of Minocin per day). I also

avoid certain foods, in particular the wrong types of fats, and take lots

of food supplements: salmon oil, vitamins, minerals, glucosamine sulfate,

MSM, and bromelain. Whatever disease I have, it responded well to

Prednisone, Celebrex, Vioxx, and the mino. On the other hand, Plaquenil and

Methotrexate did nothing for me, except that I really got sick with a

common cold that lasted for months as a result of the Methotrexate, which

depresses the immune system. For me, salmon is a wonder food. If I have a

salmon dinner, I always feel great the next day.

At this point my knee pain mostly gone, but I still have some shoulder pain

which comes and goes. The shoulder pain is a muscle soreness as if I had

over-exercised. I also experience muscle soreness and skin tenderness

half-way down my upper arms. Along the way, my left hand developed a

rheumatic nodule, but I had it surgically removed. I am now developing pain

at the base of my thumbs -- one of the symptoms of fibromyalgia.

What is the disease? While I have not yet discussed this with my

rheumatologist or adequately read up on the disease, I am currently betting

on FMS -- fibromyalgia syndrome, or soft tissue arthritis, which can create

knee and shoulder pain as a result of bursitis. FMS is primarily treated

with inexpensive mineral supplements, in particular magnesium, zing,

manganese, selenium and copper.

Please read up on FMS and bursitis at

http://www.arthritistrust.org/education/treatments/bursitis.htm

Please try to get your minocycline prescription upgraded to brand name

Minocin if you can. See

http://mercola.com/2000/aug/27/Rheumatoid Arthritis.htm.

As a second choice, go the generic by Wyeth-Ayerst.

Sincerely, Harald

At 07:00 PM 6/9/2002 -0700, you wrote:

>I am a 53 year old female recently diagnosed with RA. I am confused by

>the paradoxes--my SED rate is low and RA factor is negative. My pain

>started in my left knee, moved to my right knee and into my shoulder

>joints. I am now having some stiffness and pain in my fingers and a

>nodule is developing on my right hand. The pain in my shoulders is the

>most troubling and seems to affect the muscles more than the joints. I

>went to a rheumatologist 2X. First I was on prednisone and he told me to

>come back when I stopped the prednisone. When I went back, he wanted to

>start me on methotrexate. I insisted on AP. He must have had a good

>laugh on me because, when I asked for pain meds, he prescribed

>ibuprophen. I also asked for the name brand minocin and he prescribed the

>generic. I live in the Richmond, VA, area and would like to find a

>rheumatologist who will be willing to work with me on an AP. I also need

>support desperately. I've always been so active--taking aerobics classes

>and working in the yard. My family doesn't know what to think or do. I

>am a school teacher and want to continue working. Any help will be

>appreciated. I don't know exactly what to take or do. The rheumatologist

>said no to exercise, physical therapy, and a special diet. I am confused

>by all I read on this forum. If you can guide me to the appropriate

>treatment for this disease, I will be forever grateful.

>

>-m-

June 10, 2002

>>I am a 53 year old female recently diagnosed with RA. I am confused by

>>the paradoxes--my SED rate is low and RA factor is negative. My pain

>>started in my left knee, moved to my right knee and into my shoulder

>>joints. I am now having some stiffness and pain in my fingers and a

>>nodule is developing on my right hand. The pain in my shoulders is the

>>most troubling and seems to affect the muscles more than the joints. I

>>went to a rheumatologist 2X. First I was on prednisone and he told me to

>>come back when I stopped the prednisone. When I went back, he wanted to

>>start me on methotrexate. I insisted on AP. He must have had a good

>>laugh on me because, when I asked for pain meds, he prescribed

>>ibuprophen. I also asked for the name brand minocin and he prescribed the

>>generic. I live in the Richmond, VA, area and would like to find a

>>rheumatologist who will be willing to work with me on an AP. I also need

>>support desperately. I've always been so active--taking aerobics classes

>>and working in the yard. My family doesn't know what to think or do. I

>>am a school teacher and want to continue working. Any help will be

>>appreciated. I don't know exactly what to take or do. The rheumatologist

>>said no to exercise, physical therapy, and a special diet. I am confused

>>by all I read on this forum. If you can guide me to the appropriate

>>treatment for this disease, I will be forever grateful.

>>

>>-m-

I work in Richmond and have RA. I live farther north, up

around Fredericksburg. The only doctor I have been able

to find in this area who will prescribe minocin is in

andria. He's in what's left of the original clinic

started by Dr. Brown, and is a Dr. Kempf. I get the impression

though that he really doesn't believe in the AP. He wants

to start me on Remicade, Enbrel, or Kineret. They're

some kind of infusion things.

Please feel free to email me directly instead of through

the group if you need to.

Vern

************************

Please disregard the link to my ISP!

http://www.bealenet.com

June 10, 2002

I had the same problem. Very low SED and Rfactor. I

stayed like this for three years. Then the labs esdalated in incredibly

high numbers on the AP. They are still high after three years but are

nowhere near where they used to be.

I am a 53 year old female recently

diagnosed with RA. I am confused by the paradoxes--my SED rate is

low and RA factor is negative. My pain started in my left knee,

moved to my right knee and into my shoulder joints. I am now having

some stiffness and pain in my fingers and a nodule is developing on my

right hand. The pain in my shoulders is the most troubling and

seems to affect the muscles more than the joints. I went to a

rheumatologist 2X. First I was on prednisone and he told me to come

back when I stopped the prednisone. When I went back, he wanted to

start me on methotrexate. I insisted on AP. He must have had

a good laugh on me because, when I asked for pain meds, he prescribed

ibuprophen. I also asked for the name brand minocin and he

prescribed the generic. I live in the Richmond, VA, area and would

like to find a rheumatologist who will be willing to work with me on an

AP. I also need support desperately. I've always

-m-

June 12, 2002

on 6/10/02 12:50 AM, Harald Weiss, Technical Marketing Group, at

hw@..., wrote:

> fibromyalgia syndrome, or soft tissue arthritis, which can create

> knee and shoulder pain as a result of bursitis.

Harald, I'm not sure this is right. Fibromyalgia by definition does not

include inflammation, so it would not include bursitis. Rheumatoid and other

inflammatory arthritis conditions are often accompanied by soft tissue

inflammation, particularly tendons and bursa.

Rheumatoid nodules are definitely not associated with FMS. FMS-like pain

distribution may accompany inflammatory arthritism but in that instance is

likely caused by the inflammatory disease.

> FMS is primarily treated

> with inexpensive mineral supplements, in particular magnesium, zing,

> manganese, selenium and copper.

These treatments may well help, and I would encourage you to try them.

However, the symptoms you are describing cannot be entirely explained by

FMS.

--

Jean

jpro2@...

June 12, 2002

It appears that RA and FMS (fibromyalgia syndrome or soft tissue arthritis)

are closely related diseases, which may be caused by the same virus or

micoplasma. Both respond to some of the same treatments, such as

prednisone. I have read that RA can lead to FMS, and vice versa. You are

correct in stating that rheumatoid and other inflammatory arthritis

conditions are often accompanied by soft tissue inflammation, particularly

tendons and bursae. I know from experience.

Bursitis, which is an inflammation of fluid filled sacs which surround the

joints, is classified by some as falling under FMS. It is distinct from

fibromyalgia proper, which has specific diagnostic criteria as stated by

the American College of Rheumatology in 1990.

It is one thing to label these diseases, the hard thing to get rid of them.

you speak with such authority. Are you a healthcare practitioner?

Sincerely, Harald

At 12:04 PM 6/12/2002 -0500, you wrote:

>on 6/10/02 12:50 AM, Harald Weiss, Technical Marketing Group, at

>hw@..., wrote:

>

> > fibromyalgia syndrome, or soft tissue arthritis, which can create

> > knee and shoulder pain as a result of bursitis.

>

>Harald, I'm not sure this is right. Fibromyalgia by definition does not

>include inflammation, so it would not include bursitis. Rheumatoid and other

>inflammatory arthritis conditions are often accompanied by soft tissue

>inflammation, particularly tendons and bursa.

>

>Rheumatoid nodules are definitely not associated with FMS. FMS-like pain

>distribution may accompany inflammatory arthritism but in that instance is

>likely caused by the inflammatory disease.

>

> > FMS is primarily treated

> > with inexpensive mineral supplements, in particular magnesium, zing,

> > manganese, selenium and copper.

>

>These treatments may well help, and I would encourage you to try them.

>However, the symptoms you are describing cannot be entirely explained by

>FMS.

>

>--

>Jean

>jpro2@...

June 13, 2002

on 6/13/02 12:51 AM, Harald Weiss, Technical Marketing Group, at

hw@..., wrote:

>

> It appears that RA and FMS (fibromyalgia syndrome or soft tissue arthritis)

> are closely related diseases, which may be caused by the same virus or

> micoplasma. Both respond to some of the same treatments, such as

> prednisone.

Harald, you are reading from a wide variety of sources, many of which are

not mainstream interpretations of FM. This is from the Fibromaylgia Network

<http://www.fmnetnews.com/pages/basics.html>

" FMS (fibromyalgia syndrome) is a widespread musculoskeletal pain and

fatigue disorder for which the cause is still unknown. Fibromyalgia means

pain in the muscles, ligaments and tendons--the fibrous tissues in the body.

FMS used to be called fibrositis, implying that there was inflammation in

the muscles, but research later proved that inflammation did not exist. "

I am quoting mainstream medical sources not because I think they offer the

only useful treatment, but because the American College of Rheumatology has

established diagnostic criteria which must be followed to maintain the

integrity of this diagnosis, and to determine appropriate treatment. If your

own signs, symptoms and lab tests do not meet the diagnostic criteria, you

do not have FM. **If you have an inflammatory disease, but are only treated

for FM, the treatment will not be successful.**

Please note the last line of the above quote indicating inflammation is not

a part of fibromyalgia. You will find this time and again as you read

materials from the ACR, Arthritis Foundation, Mayo Clinic, etc.

I can't find a citation on the Net right now about the ineffectiveness of

corticosteriods in treating true FM, but I have also read this many times in

the 14 years I've been reading about rheumatic diseases.

I have a rheumatology textbook which states that earlier criteria for the

diagnosis of FM included NORMAL sedimentation rate, ANA, rheumatoid factor,

muscles enzymes, and SI joint films (Arthritis and Allied Conditions,

J. McCarty.)

What these earlier researchers and clinicians were adamant about was not

attributing soft tissue pain caused by a treatable inflammatory or endocrine

disease to FM. I fear that the " popularization " of the FM diagnosis has lead

to many inappropriate diagnoses of FM, which in turn may mean that

appropriate treatment of the inflammation, trauma, or endocrine disorder may

be unnecessarily delayed or skipped entirely. I have seen this happen, it is

a shame, and can lead to much unnecessary suffering.

> I have read that RA can lead to FMS, and vice versa. You are

> correct in stating that rheumatoid and other inflammatory arthritis

> conditions are often accompanied by soft tissue inflammation, particularly

> tendons and bursae. I know from experience.

I think there are several considerations here. Some of the materials I have

read distinguish between primary and secondary FM. I find these distinctions

useful. Primary FM includes no inflammation, and requires normal lab

results, and no clinical signs of inflammation: e.g., no rheumatoid factor,

normal sed rate, no rheumatoid nodules or synovitis, etc. Soft tissue

inflammation in defined areas such as tendons or bursa in the presence of

rheumatic disease is not FM, it is soft tissue inflammation, likely caused

by the same inflammatory process which causes the synovitis.

Secondary FM can and does exist in the presence of inflammatory disease, and

the pain and sleep loss of the inflammatory disease is likely the trigger

for the FM.

" Many researchers, such as myself, view FMS as a central pain state which is

maintained by peripheral pain generators. These pain generators include

conditions such as osteoarthritis, rheumatoid arthritis, reflex sympathetic

dystrophy, injuries, and just common post-exertional pain. " -

, M.D. Chairman of the Arthritis and Rheumatic Diseases Division at

Oregon Health Sciences University.

<http://www.fmnetnews.com/pages/hottopic.html>

> Bursitis, which is an inflammation of fluid filled sacs which surround the

> joints, is classified by some as falling under FMS. It is distinct from

> fibromyalgia proper, which has specific diagnostic criteria as stated by

> the American College of Rheumatology in 1990.

I don't believe any mainstream rheumatology sources will list bursitis as

falling under the classification of FM. Bursitis can be caused by local

trauma or systemic inflammatory disease. Either of these can _accompany_ FM,

but if you adhere to the ACR criteria, inflammation cannot be attributed to

FM.

I understand why this confusion of soft tissue pain syndromes and FM arises.

If you read Garth Nicholson's work, he indeed does believe that some FM or

CFS is caused or complicated by mycoplasma infection, and I feel this may

well turn out to be the case. He states that some mycoplasma infection does

not cause elevated sed rate, because of the mechanism of infection, which

allows the organism to stay under the immune system's radar.

In the context of alternative or innovative FM treatment, you may get

appropriate treatment for inflammation with a diagnosis of FM: for instance,

minocycline may be effective for both inflammatory rheumatic disease and FM.

In the context of mainstream rheumatology, a diagnosis of FM and a missed

diagnosis of RA or lupus or spondyloarthropathy or other inflammatory

disease, or injury, will lead to needless suffering. Mainstream rheumatology

holds that FM, by definition, will not respond to cortisone. My own doctor

used a short course of cortisone to clarify my diagnosis. When my soft

tissue pain responded dramatically to cortisone, he was able to attribute

the pain to inflammation, and rule out FM.

Nonetheless, some of the treatments for FM, particularly improvement in

sleep and lessening of muscle spasm through the use of a muscle relaxant,

have helped me a great deal. That is why I personally would encourage you to

pursue the treatments you have read about for FM, but not neglect treatment

appropriate for a confirmed case of inflammatory rheumatic disease.

> It is one thing to label these diseases, the hard thing to get rid of them.

No argument here

> you speak with such authority. Are you a healthcare practitioner?

No, I'm an artist, so take whatever I may write with a huge grain of salt

<g> That said, I am a technical artist whose work is based upon logical

procedures, I often do technical illustration, and I have always read the

sciences with great interest.

My own confusing diagnosis is why I have read so much about FM. I have

reactive arthritis, or something similar, which initially presented as

synovitis and uveitis, and was diagnosed and treated as an inflammatory

disease. Over time, the easily identifiable inflammatory signs diminished,

but the tendonitis and bursitis remained, causing increasing disability

while they caused decreasing positive clinical signs and lab results. A

second opinion from a highly regarded but sloppy and arrogant rheumatologist

brought a great deal of turmoil and missed opportunity to my life when she

inappropriately forced a diagnosis of FM onto me, while also stating that I

didn't fit the pattern of FM. It took me a good while to get appropriate

treatment after that, and I suffered greatly from the confusion of an

incorrect diagnosis and pain of an untreated rheumatic disease.

Finally, my own regular doctor came to the conclusion that the arrogant

rheumatologist was wrong, and I received appropriate treatment, which

included minocycline, and I have improved greatly.

Hope this long-winded answer was of some interest.

Regards,

Jean

> Sincerely, Harald

>

> At 12:04 PM 6/12/2002 -0500, you wrote:

>> on 6/10/02 12:50 AM, Harald Weiss, Technical Marketing Group, at

>> hw@..., wrote:

>>

>>> fibromyalgia syndrome, or soft tissue arthritis, which can create

>>> knee and shoulder pain as a result of bursitis.

>>

>> Harald, I'm not sure this is right. Fibromyalgia by definition does not

>> include inflammation, so it would not include bursitis. Rheumatoid and other

>> inflammatory arthritis conditions are often accompanied by soft tissue

>> inflammation, particularly tendons and bursa.

>>

>> Rheumatoid nodules are definitely not associated with FMS. FMS-like pain

>> distribution may accompany inflammatory arthritism but in that instance is

>> likely caused by the inflammatory disease.

>>

>>> FMS is primarily treated

>>> with inexpensive mineral supplements, in particular magnesium, zing,

>>> manganese, selenium and copper.

>>

>> These treatments may well help, and I would encourage you to try them.

>> However, the symptoms you are describing cannot be entirely explained by

>> FMS.

>>

June 14, 2002

Hello Everyone.

I was told I had a severe case of FMS with the RA and Discoid Lupus of

the skin only, and the Dr. at the Cleveland Clinic said that I was in a catch

22 as the prednisone made my Fms worse but helped me with RA and Lupus, well

I did find this to be true, pain is pain and after 15 yrs on AP and change of

diet it is all gone except for fatigue which I have not won as yet still

working on this. Just My View from Ohio. I personally think it is all

the same infection hitting at different points in the body is all.

June 14, 2002

Very well put. I am medically trained and understand the significant

differences between RA and FMS. Harald, hope you gain some valuable insight

from Jean's post.

Kim

Re: rheumatic RA

> on 6/13/02 12:51 AM, Harald Weiss, Technical Marketing Group, at

> hw@..., wrote:

>

> >

> > It appears that RA and FMS (fibromyalgia syndrome or soft tissue

arthritis)

> > are closely related diseases, which may be caused by the same virus or

> > micoplasma. Both respond to some of the same treatments, such as

> > prednisone.

>

> Harald, you are reading from a wide variety of sources, many of which are

> not mainstream interpretations of FM. This is from the Fibromaylgia

Network

> <http://www.fmnetnews.com/pages/basics.html>

>

> " FMS (fibromyalgia syndrome) is a widespread musculoskeletal pain and

> fatigue disorder for which the cause is still unknown. Fibromyalgia means

> pain in the muscles, ligaments and tendons--the fibrous tissues in the

body.

> FMS used to be called fibrositis, implying that there was inflammation in

> the muscles, but research later proved that inflammation did not exist. "

>

> I am quoting mainstream medical sources not because I think they offer the

> only useful treatment, but because the American College of Rheumatology

has

> established diagnostic criteria which must be followed to maintain the

> integrity of this diagnosis, and to determine appropriate treatment. If

your

> own signs, symptoms and lab tests do not meet the diagnostic criteria, you

> do not have FM. **If you have an inflammatory disease, but are only

treated

> for FM, the treatment will not be successful.**

>

> Please note the last line of the above quote indicating inflammation is

not

> a part of fibromyalgia. You will find this time and again as you read

> materials from the ACR, Arthritis Foundation, Mayo Clinic, etc.

>

> I can't find a citation on the Net right now about the ineffectiveness of

> corticosteriods in treating true FM, but I have also read this many times

in

> the 14 years I've been reading about rheumatic diseases.

>

> I have a rheumatology textbook which states that earlier criteria for the

> diagnosis of FM included NORMAL sedimentation rate, ANA, rheumatoid

factor,

> muscles enzymes, and SI joint films (Arthritis and Allied Conditions,

> J. McCarty.)

>

> What these earlier researchers and clinicians were adamant about was not

> attributing soft tissue pain caused by a treatable inflammatory or

endocrine

> disease to FM. I fear that the " popularization " of the FM diagnosis has

lead

> to many inappropriate diagnoses of FM, which in turn may mean that

> appropriate treatment of the inflammation, trauma, or endocrine disorder

may

> be unnecessarily delayed or skipped entirely. I have seen this happen, it

is

> a shame, and can lead to much unnecessary suffering.

>

> > I have read that RA can lead to FMS, and vice versa. You are

> > correct in stating that rheumatoid and other inflammatory arthritis

> > conditions are often accompanied by soft tissue inflammation,

particularly

> > tendons and bursae. I know from experience.

>

> I think there are several considerations here. Some of the materials I

have

> read distinguish between primary and secondary FM. I find these

distinctions

> useful. Primary FM includes no inflammation, and requires normal lab

> results, and no clinical signs of inflammation: e.g., no rheumatoid

factor,

> normal sed rate, no rheumatoid nodules or synovitis, etc. Soft tissue

> inflammation in defined areas such as tendons or bursa in the presence of

> rheumatic disease is not FM, it is soft tissue inflammation, likely caused

> by the same inflammatory process which causes the synovitis.

>

> Secondary FM can and does exist in the presence of inflammatory disease,

and

> the pain and sleep loss of the inflammatory disease is likely the trigger

> for the FM.

>

> " Many researchers, such as myself, view FMS as a central pain state which

is

> maintained by peripheral pain generators. These pain generators include

> conditions such as osteoarthritis, rheumatoid arthritis, reflex

sympathetic

> dystrophy, injuries, and just common post-exertional pain. " -

> , M.D. Chairman of the Arthritis and Rheumatic Diseases Division at

> Oregon Health Sciences University.

> <http://www.fmnetnews.com/pages/hottopic.html>

>

> > Bursitis, which is an inflammation of fluid filled sacs which surround

the

> > joints, is classified by some as falling under FMS. It is distinct from

> > fibromyalgia proper, which has specific diagnostic criteria as stated by

> > the American College of Rheumatology in 1990.

>

> I don't believe any mainstream rheumatology sources will list bursitis as

> falling under the classification of FM. Bursitis can be caused by local

> trauma or systemic inflammatory disease. Either of these can _accompany_

FM,

> but if you adhere to the ACR criteria, inflammation cannot be attributed

to

> FM.

>

> I understand why this confusion of soft tissue pain syndromes and FM

arises.

> If you read Garth Nicholson's work, he indeed does believe that some FM or

> CFS is caused or complicated by mycoplasma infection, and I feel this may

> well turn out to be the case. He states that some mycoplasma infection

does

> not cause elevated sed rate, because of the mechanism of infection, which

> allows the organism to stay under the immune system's radar.

>

> In the context of alternative or innovative FM treatment, you may get

> appropriate treatment for inflammation with a diagnosis of FM: for

instance,

> minocycline may be effective for both inflammatory rheumatic disease and

FM.

> In the context of mainstream rheumatology, a diagnosis of FM and a missed

> diagnosis of RA or lupus or spondyloarthropathy or other inflammatory

> disease, or injury, will lead to needless suffering. Mainstream

rheumatology

> holds that FM, by definition, will not respond to cortisone. My own doctor

> used a short course of cortisone to clarify my diagnosis. When my soft

> tissue pain responded dramatically to cortisone, he was able to attribute

> the pain to inflammation, and rule out FM.

>

> Nonetheless, some of the treatments for FM, particularly improvement in

> sleep and lessening of muscle spasm through the use of a muscle relaxant,

> have helped me a great deal. That is why I personally would encourage you

to

> pursue the treatments you have read about for FM, but not neglect

treatment

> appropriate for a confirmed case of inflammatory rheumatic disease.

>

> > It is one thing to label these diseases, the hard thing to get rid of

them.

>

> No argument here

>

> > you speak with such authority. Are you a healthcare practitioner?

>

> No, I'm an artist, so take whatever I may write with a huge grain of salt

> <g> That said, I am a technical artist whose work is based upon logical

> procedures, I often do technical illustration, and I have always read the

> sciences with great interest.

>

> My own confusing diagnosis is why I have read so much about FM. I have

> reactive arthritis, or something similar, which initially presented as

> synovitis and uveitis, and was diagnosed and treated as an inflammatory

> disease. Over time, the easily identifiable inflammatory signs diminished,

> but the tendonitis and bursitis remained, causing increasing disability

> while they caused decreasing positive clinical signs and lab results. A

> second opinion from a highly regarded but sloppy and arrogant

rheumatologist

> brought a great deal of turmoil and missed opportunity to my life when she

> inappropriately forced a diagnosis of FM onto me, while also stating that

I

> didn't fit the pattern of FM. It took me a good while to get appropriate

> treatment after that, and I suffered greatly from the confusion of an

> incorrect diagnosis and pain of an untreated rheumatic disease.

>

> Finally, my own regular doctor came to the conclusion that the arrogant

> rheumatologist was wrong, and I received appropriate treatment, which

> included minocycline, and I have improved greatly.

>

> Hope this long-winded answer was of some interest.

>

> Regards,

>

> Jean

>

> > Sincerely, Harald

> >

> > At 12:04 PM 6/12/2002 -0500, you wrote:

> >> on 6/10/02 12:50 AM, Harald Weiss, Technical Marketing Group, at

> >> hw@..., wrote:

> >>

> >>> fibromyalgia syndrome, or soft tissue arthritis, which can create

> >>> knee and shoulder pain as a result of bursitis.

> >>

> >> Harald, I'm not sure this is right. Fibromyalgia by definition does not

> >> include inflammation, so it would not include bursitis. Rheumatoid and

other

> >> inflammatory arthritis conditions are often accompanied by soft tissue

> >> inflammation, particularly tendons and bursa.

> >>

> >> Rheumatoid nodules are definitely not associated with FMS. FMS-like

pain

> >> distribution may accompany inflammatory arthritism but in that instance

is

> >> likely caused by the inflammatory disease.

> >>

> >>> FMS is primarily treated

> >>> with inexpensive mineral supplements, in particular magnesium, zing,

> >>> manganese, selenium and copper.

> >>

> >> These treatments may well help, and I would encourage you to try them.

> >> However, the symptoms you are describing cannot be entirely explained

by

> >> FMS.

> >>

>

> To unsubscribe, email: rheumatic-unsubscribeegroups

>

December 7, 2002

Mae Folk wrote:

> Hello Everbody!

> I ran into a man that I know in the Grocery Store the other day. He was

> telling me that he had RA, and his Dr. told him that RA was the next or

> closest thing to having cancer. I just thought Id pass that along to you, as

> I was just wondering about that.Please comment on this.

Hi Ann,

Well, my feeling is that a lot more people die of cancer than they do RA.

Usually if you have cancer you can't just live with it like you can some RA, you

have to do something drastic to keep it from spreading such as surgery and chemo

or radiation. Now I will agree that there are some fast acting forms of RA,

Lupus and especially scleroderma that you can't just live with and people do die

of it. But now with AP we don't even have to just live with it and most of us

don't have to have the toxic drugs either. It's a shame that this therapy isn't

more widely known to people or widely recognized by the medical field. That's

why it's important to spread the word as much as you can so that others

suffering from these rheumatic diseases can know about it and get their lives

back too. I hope you told this man about AP and about this web site so that he

can check it all out for himself.

I used to never tell people that I had RA because I didn't want them to feel

sorry for me...but now I tell a whole lot of people about it becasue I now have

an answer for them. I usually find that most people know of someone suffering

from a rheumatic disease and I write down all the information for them so that

they can find it on the internet and get the books to read. It's a shame we

can't get more interest in the media on these diseases because they affect so

many people.

I was glad to see the article in the Times Magazine about arthritis. Things

like this will help make people more aware of it. I wish they would have

plugged antibiotics more but even a mention is a step forward and maybe get

people to thinking about it.

Jeanette

December 8, 2002

Ann wrote:

> I ran into a man that I know in the Grocery Store the other day. He was

telling me that he had RA, and his Dr. told him that RA was the next or

closest thing to having cancer. I just thought Id pass that along to you, as

> I was just wondering about that.Please comment on this.

Back in 1994, I was diagnosed first with a-cutis leukemia later changed to

lymphomatoid papulosis. Since it was considered a rather rare disease, I

decided to spend some time in the medical library to see what I could learn

about it. In doing so, I ran across several studies showing a higher

incidence of malignancy in RA patients than the general population. (There

are also studies linking the other rheumatic diseases and cancer.)

That triggered my memory. Back when I was battling polymyositis -

unresponsive to therapy, my physician (Chief of Rheumatology at Wash. U. in

St. Louis) told me one thing we needed to watch for was cancer.

Now I was questioning if the organism responsible for the RA and

polymyositis could also be causing the lymphomatoid papulosis, and if that

organism was transmissable between spouses.

Dr. Brown stated that mothers could infect their children during the

birthing process. He thought mothers should be tested for mycoplasma just

prior to giving birth, and if found to be positive, then the baby should be

given a short course of antibiotics. Hm! This could then be sexually

transmissible? The strength of the immune system would determine whether

the spouse developed disease?

From 1989 to 1994 I had a support group of around 30 to 35 people on this

therapy, and in that group alone we had -

a nurse with RA five years - later diagnosed with breast cancer.

Joan - RA 10 years - now diagnosed with breast cancer.

Joan S. - scleroderma, lupus, polymyositis, SS - 22 years - husband just

diagnosed with lupus.

Mae - RA, PM - 14 years, husband diagnosed with adenocarcinoma.

In the 12+ years I've been helping people learn about this therapy I've

learned of many others including these that come to mind as I type -

in TN- RA - now lung cancer.

Sheila in NM - RA - now breast cancer

n in MN - ravaging RA - now breast cancer

Barbara in AZ- MCTD 8 years - husband now as RA.

Lily in NV - RA 12 years - now liver cancer

We've known of two women formerly in this group that ended up with cancer -

one had scleroderma first, the other RA.

It's too late tonight to relate what I discovered in my own research, but

I've come to the conclusion, the same organism that causes RA also causes

cancer.

Your best defense is a strong immune system and that's accomplished by a

healthy lifestyle - a proper diet, appropriate supplements, loooots of good

water, exercise and daily (good) bowel movements. (plural)

Ethel

December 8, 2002

There's one person I forgot to mention in my last message - our own Carol

Zarn

She was first diagnosed with dermatomyositis in 1994 and 6 years later was

diagnosed with non-Hodgkin's large B-cell lymphoma.

Ethel

October 8, 2003

Hi Rod:

The spine

in RA is subject to several categories of dysfunction, all leading to abnormal

tone and the resultant chronic subluxations:

ligamentous

laxity at the alar ligament leading to chronic atlas subluxations and

subsequent spinal subluxation sequella;

CNS/autonomic

impairment the ability of the immune system to target pathogens vs. host

tissues;

CNS/autonomic/enteric

nervous system dysfunctions that alter the absorptive and digestive

capabilities to the extent that the nervous system is often malnourished

and exposed to numerous dysbiotic and exogenous toxins;

Circulatory

and MS deconditioning due to lack of exercise which, of course compounds

the above problems, especially in the joints where the blood becomes

static and progressively inhibits normal function of the slowest growing,

yet highly compressed cells of the growing cartilage and synovial membranes,

thus yielding more damaged cellular components and immunes system

reactions;

Increased

cyclically and temporally activated systemic reactive immune system

complexes that have lost a good measure of the CNS/ANS control mechanisms

and which very likely attack neural tissue outside of the brain/blood

barrier

Toxic

overload of the kidneys, lymphatics, colon and other emunctory systems

with concomitant impaired neural function;

Psychological

predisposition to helplessness, anxiety, and depression which affects the

postural state of the spine as well as the tone of the spine.

I am

certain the list could be expanded. The obvious state here makes an immediate

case for the unlikely value of any form of monotherapy, be it drugs or

chiropractic adjustment. The best approach is one that stabilizes the CNS/ANS

by adjustment of subluxations with an attendant clearing of each area noted

above.

I have a

patient who is a music teacher who now presents with drug induced deafness caused

directly by RA drug therapy. Guess what? He still has RA, now also deafness.

There is no cure for RA. There is no cure for RA. A person with RA must accept

the need for improving their health, just like anyone else, and take the

logical steps to augment the body’s innate recuperative mechanisms. The DC will

know first when these components are having a positive effect by the diminution

of subluxations, which will never be eliminated.

So now, to

whom should your refer this patient? I think you should treat him or her

yourself. I think you should be there when he or she wants to quit everything

and give up and take the drugs and do nothing to recover. Yes, I think you can

do it, I have plenty of the same type of people here at my office and it is

time for you to take some of them yourself.

Start with

water exercise or a stationary bike. Next get the diet in order so the client

is at an ideal weight. Fill them with antioxidants, vitamins, and herbal items

like ginger and curcumin, enzymes like wobenzyme, and plenty of pure water. Reconnect

their innate intent to heal with their ANS and the rest of their body and find

a reason to enjoy the life they have. Find their allergies and desensitize them

with homeopathic nosodes or you can adjust them away with the patient’s

assistance. Correct their posture, the way they walk, the way they move, the

pattern of their sleep, the way they breathe. Hot baths, ultrasound, massage,

meridian therapy, whatever searching and treating techniques that take you to

your limits will be necessary and unfortunately, insufficient, but happily

adequate.

Good luck,

Willard

Bertrand, DABCN, CCN, FBCIA, DC

-----Original

Message-----

From: Rod

[mailto:rjacksondc@...]

Sent: Wednesday, October 08, 2003

10:02 AM

Subject: RA

Hi

everyone:

34 year

old female with early RA in both hands has been prescribed Plaquenil

(hydroxychloroquine) and is a bit freaked about side effects and is looking for

possible alternatives. I told her I would consult my extremely well learned and

prestigious colleagues about this drug and

possibilities

for alternative therapies. Thanks!

Rod

, DC

OregonDCs rules:

1. Keep correspondence professional; the purpose of the listserve is to

foster communication and collegiality. No personal attacks on listserve members

will be tolerated.

2. Always sign your e-mails with your first and last name.

3. The listserve is not secure; your e-mail could end up anywhere. However,

it is against the rules of the listserve to copy, print, forward, or otherwise

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unless all personal identifiers have been removed.

Your use of

is subject to the

Terms of Service.

October 10, 2003

Hi Rod,

Teach her about removing the stimulus from the diary protein and perhaps she won't need the chemical med. Check out info about the connection between RA and the diary protein (it is strong) at www.NOTMILK.com. I teach my pateints that they don't need to lose the flavors of dairy, just get them from the plant kingdom (soy, rice, nuts ….. so many commercial products available now) rather than the cow. An initial test would be to avoid dairy products for 7 days and then have one serving of whatever is her favorite (use the food survey that I sent out last week) and watch what happens in her body over the next 3 days. Sunny ;'-)

Sunny Kierstyn, RN DCFibromyalgia Care Center of Oregon711 Country Club Rd., #1AEugene, Oregon541-345-9436

RA

Hi everyone:34 year old female with early RA in both hands has been prescribed Plaquenil (hydroxychloroquine) and is a bit freaked about side effects and is looking for possible alternatives. I told her I would consult my extremely well learned and prestigious colleagues about this drug andpossibilities for alternative therapies. Thanks!Rod , DC

January 29, 2004

Janet, this must be very difficult for you since sleep is so important when

you're in pain. Are you taking calcium and magnesium? These can often help

with leg cramps. If you spread them into more than one dose, it often helps

to take one before bed because ca/mag can relax your muscles and help you

sleep as well.

(RA 25+ years, AP since Nov. 97)

rheumatic RA

> Dear Group:

> its 3:30A.M. and my RA has made rest bad again. Does anyone know a help

for cramps in the legs at night? I'd be glad for any help. The RA came

back and settled in my legs and feet after a 2 year remission, and since the

AP willnot work a second time, I now am back on trex and Arava. The usual

stuff like Aleve will not touch the discomfort. I ignor it during the day,

but the nights are hard to ignor. I keep on the diet and water and Omega 3

in the hopes it will help. This is l5 years with this great group of folks.

Thanks for being so kind and friendly. LOL Janet-Montana USA

>

February 2, 2004

I see two things that need answering in this.

First of all leg cramos. If it is truly cramps and not joint pain, try

using extra calcium or potassium supplements if the calcium does not work. I

went on calcium as I have always had leg and toe cramps at night...the kind you

hop out of bed and dance around like an idiot

with. A few days after starting calcium the cramps disappeared. As long as

I take the calcium the cramps stay away. If I forget the calcium for a week

or two....I do the " midnight dance " as my husband calls it, until I get back on

the calcium.

The second thing I see...who told you AP won't work a second time??? I

have talked to several people and occasionally one may need to change

antibiotics or rework the doses, but many people have gotten into remission a

second

time...it just takes more work!!! A year ago after a long period of remission

I decided to slow down my minocin and began omitting doses (a really bad

decision on my part). After awhile my RA flared again and you better believe I

went back on the Minocin seven days a week for awhile, then down to five days,

then back to the three days a week. I am back into remission and will not do

that again. If for some reason in the future the Minocin seems to stop

working,

I will switch to doxycycline or one of the many others avaliable. Where

there is a will there is a way!!.

It may be harder to achieve remission a second time, but it can be done.

Martha

October 5, 2004

....You said you tried AB...did you mean antibiotics?? How long were

you on the minocin and where do live?? If you give us more info I am sure

people on the rheumatic board might have suggestions. What were you diagnosed

with?? RA?? How long have you had it?? Give us as much of your story from

start to finish with how your disease started, how long have you had it, what

you have done, what worked, what didn't. Martha

November 18, 2004

Greetings from New Zealand,

Hello Ethel, its me again after a few years, and although I am an almost

non-existent emailer / poster, I always read every message and file away

the ones I thought will one day be useful.

I am writing to you in desperation, sheer terror and the fact that I am

still in a total state of shock that I have been diagnosed with " large

granular lymphocytic leukaemia " - I am hoping you may be able to point

me in some sort of direction as to what to do next to give me the best

chance of survival..

As yet I have not found out much apart from the research I have done on

the internet. I meet with my doctors next Friday so have a week to wait

before I present my list of questions.

The one thing that shocked me the most was my Oncologists comment, that

the health science world has only discovered 6 - 7 years ago a direct

link between severe rheumatoid arthritis and lymphocyctic leukaemia. It

is not going to help either, that I am the only one with this in my

province of Southland, lower South Island of New Zealand.

I so want to live a lot longer yet! I have been through so much

already. 8 (yes eight) total hip replacements, double knees, C1-C2

fusion due to subluxation (which also was a one in a million arthritic

people odds that I had to have) metatarsals removed and so on and so

on. I really am starting to wonder " Why me again? "

Regards: Imelda

42 years old

RA 27 years (I was 15 when diagnosed with severe, early onset

sero-positive rheumatoid)

Mincocyline, NSAID=Tilcotil, Prednisone ...... and so on

PS I kept this email of yours from goodness know when never dreaming it

would me that would need this sort of help.

Ethel Snooks wrote:

> Ann wrote:

>

> > I ran into a man that I know in the Grocery Store the other day. He was

> telling me that he had RA, and his Dr. told him that RA was the next or

> closest thing to having cancer. I just thought Id pass that along to

> you, as

> > I was just wondering about that.Please comment on this.

>

> Back in 1994, I was diagnosed first with a-cutis leukemia later changed to

> lymphomatoid papulosis. Since it was considered a rather rare disease, I

> decided to spend some time in the medical library to see what I could

> learn

> about it. In doing so, I ran across several studies showing a higher

> incidence of malignancy in RA patients than the general population.

> (There

> are also studies linking the other rheumatic diseases and cancer.)

>

> That triggered my memory. Back when I was battling polymyositis -

> unresponsive to therapy, my physician (Chief of Rheumatology at Wash.

> U. in

> St. Louis) told me one thing we needed to watch for was cancer.

>

> Now I was questioning if the organism responsible for the RA and

> polymyositis could also be causing the lymphomatoid papulosis, and if that

> organism was transmissable between spouses.

>

> Dr. Brown stated that mothers could infect their children during the

> birthing process. He thought mothers should be tested for mycoplasma just

> prior to giving birth, and if found to be positive, then the baby

> should be

> given a short course of antibiotics. Hm! This could then be sexually

> transmissible? The strength of the immune system would determine whether

> the spouse developed disease?

>

> >From 1989 to 1994 I had a support group of around 30 to 35 people on this

> therapy, and in that group alone we had -

>

> a nurse with RA five years - later diagnosed with breast cancer.

>

> Joan - RA 10 years - now diagnosed with breast cancer.

>

> Joan S. - scleroderma, lupus, polymyositis, SS - 22 years - husband just

> diagnosed with lupus.

>

> Mae - RA, PM - 14 years, husband diagnosed with adenocarcinoma.

>

> In the 12+ years I've been helping people learn about this therapy I've

> learned of many others including these that come to mind as I type -

>

> in TN- RA - now lung cancer.

> Sheila in NM - RA - now breast cancer

> n in MN - ravaging RA - now breast cancer

> Barbara in AZ- MCTD 8 years - husband now as RA.

> Lily in NV - RA 12 years - now liver cancer

>

> We've known of two women formerly in this group that ended up with

> cancer -

> one had scleroderma first, the other RA.

>

> It's too late tonight to relate what I discovered in my own research, but

> I've come to the conclusion, the same organism that causes RA also causes

> cancer.

>

> Your best defense is a strong immune system and that's accomplished by a

> healthy lifestyle - a proper diet, appropriate supplements, loooots

> of good

> water, exercise and daily (good) bowel movements. (plural)

>

> Ethel

November 21, 2004

In a message dated 11/21/2004 5:40:48 PM Eastern Standard Time,

RNMSW@... writes:

Money is also a concern for me my

> insurance co will not pay for Ap, but will pay for Remicade.

That's about $200 for two months of Minocin and $5000 every two months for

Remicade. I'd argue with them. Minocin is on the approved list of DMARDS.

What's more if the Minocin is too expensive, try doxycycline which is only

about $15 for 60 pills.

Jill

November 21, 2004

Considering that information on the increased risk of cancer has

recently been made public, you might ask the insurance company, who will pay

for this Remicade, if they pay all costs and reimbursements for cancer.

Money is also a concern for me my

> insurance co will not pay for Ap, but will pay for Remicade. I found

> this website about 5 months ago I was estatic...gave me hope that maybe

> I could have a normal life again. I'm not looking for sympathy. I

> haven't given up on finding A Doc to help me. Once again thanks for the

> info.

--

No virus found in this outgoing message.

Checked by AVG Anti-Virus.

Version: 7.0.289 / Virus Database: 265.4.1 - Release Date: 11/19/2004

November 22, 2004

Group,

I wasn't aware this email had gone to the whole group, but I responded to Imelda

privately.

Re: rheumatic RA

Greetings from New Zealand,

Hello Ethel, its me again after a few years, and although I am an almost

non-existent emailer / poster, I always read every message and file away the

ones I thought will one day be useful.

I am writing to you in desperation, sheer terror and the fact that I am still

in a total state of shock that I have been diagnosed with " large granular

lymphocytic leukaemia " - I am hoping you may be able to point me in some sort of

direction as to what to do next to give me the best chance of survival..

As yet I have not found out much apart from the research I have done on the

internet. I meet with my doctors next Friday so have a week to wait before I

present my list of questions.

The one thing that shocked me the most was my Oncologists comment, that the

health science world has only discovered 6 - 7 years ago a direct link between

severe rheumatoid arthritis and lymphocyctic leukaemia. It is not going to help

either, that I am the only one with this in my province of Southland, lower

South Island of New Zealand.

I so want to live a lot longer yet! I have been through so much already. 8

(yes eight) total hip replacements, double knees, C1-C2 fusion due to

subluxation (which also was a one in a million arthritic people odds that I had

to have) metatarsals removed and so on and so on. I really am starting to

wonder " Why me again? "

Regards: Imelda

42 years old

RA 27 years (I was 15 when diagnosed with severe, early onset sero-positive

rheumatoid)

Mincocyline, NSAID=Tilcotil, Prednisone ...... and so on

PS I kept this email of yours from goodness know when never dreaming it would

me that would need this sort of help.