My experience

[Guest guest]

,

I am very sorry to hear you are so covered with psoriasis. I can not imagine

what you must go through. I have about 25% coverage and it is enough to drive

me nuts. Fortunately MTX does help my psoriasis, but I can't stay on it for

long as it makes my teeth loose. You sure have had your share of illnesses.

Hope being a stay at home mom is going well for you and your life is less

stressful. I can't really figure out if the weather effects me or not. I do

know I prefer a cool house because I itch something fierce if I get too warm. I

don't go out in the sun much even when I am not on MTX as I have chronic IRITIS

and it bothers my eyes. Hope you can find a med that works for you and not have

to take prednisone forever.

Shirley in VA

melissaplencner <melissaplencner@...> wrote: Hi. Ok here goes....Since

having PA and Severe Psoriasis (77-80% of my

body involved) I have been on a host of drugs. I have done MTX which

didn't do a thing for me for six months. I then tried Sulfasalazine

(spelling here) which caused an allergic reation and I began vomitting

in my sleep. So now I have tried Enbrel which supressed my immune too

much. Now there is talk something called remicade? I don't know

anything about that one.

in the past I had chicken pox twice, countless upper respiratory

system and bouts with penumonia as a child. As an adult I taught in a

daycare and got rubella, and anything else the kids got like roto

virus. I gave up that career for a desk job that was stressfull only

to become a stay at home wife because of the stress.

Later I had two boys after complications in the pregnancy and birth.

Now I am a stay at home mommy. Right now My flare up is bad enough

that I am on Prednisone. Which I hate taking. Anywone out there got

any similar stories?

I am effecting by snow, rain, and extreme heat. When in humid weather

about 70-80 I clear up. I do know that mtx and sulfa make you more

sensitive to light and will burn you in a matter of mins. I am very

pale and have blond hair with blue eyes...i am always warned of this!

I know if you do burn while on a drug it cause the psoriasis to flare

worse later.

[Guest guest]

Hi, I can update my experience. Since I am still struggling, I can

give you a update later as I progress. I have worked with 4

nutritionists and now currently working with one MD, one ND, and a

Bioset practioner who teaches Bioset. (an off-shoot of NAET) They

exchange info and findings and work together to help me.

I sure learned a lot recently since no one really gave me a true

diagosis until 2 months ago ever since I found them. Altough I have

read a lot of books and searches on line,these 3 people are really

giving me a good picture of where I am and why I am stuck in the

cycle.

If you cannot find MD who have nutritional experience, try find a

reputable ND or homeopathic doctor to work with you. It's quite hard

to help yourself since you may need testings to find where you really

are and what you really have.

Basicly, I have to unplug my detox pathway first. Mainly, kidney,

liver, bowel, skin, and lymph. Before working on getting my metals

out, I must work on detoxing. But before the detoxing, I must open

the detox pathway.

My Bioset doctor gave me a homeopathic remedy to open my bowle. I

must drink 60 or more oz. to flush toxins out. I am also receiving

weekly glutathione IV to get my liver going.

I have finised diflucan for 12 days, and now on Nystatin for months.

Grape fruit seed extract on the 3rd week helped me alot. On the next

week, I received " Thieves " from the Young Living brand esseansial

oil. I had 2 drops on the skin every night. That gave me severe de-

tox Die-off reactions. My detox pathway was too shut to handle

that. So now I am going backwards. Stop killing bugs and open

pathways again.

My bioset doctor said that as soon as I am less toxic, I will become

less sensative to all foods. Then I can be desensatized thru

Bioset. But detox is the first step. She monitors me almost 4 times

a week if I need.

Since I have metals, candida and other bugs may still be there. But

once it's under some degree of control, I can start supplements to

rebuild my body. Then I will be ready for chelation for metals.

Hope it's helpful. It's a long journey, but I am grateful for

someone to point the way.

My 9 year old daughter has similar situations since birth and is

under the same treatments.

> Hi , your medical situation is very similar to mine except,

in

> addition to the zucchini and yellow squash, I can eat some small

amount

> organic beef and chicken. You are very lucky to have an MD who

practices

> homeopathy medicine. I have not been able to find anyone in my

city of San

> . I would appreciate it very much if you could share with

us any

> information that you are using or plan to use to help heal

yourself. People

> like us have such a poor quality of life. I have somewhat slowed

down my

> medical problems by following the suggestions in a book called

Breaking The

> Vicious Cycle, by Elaine Gottschall. However, I am going to have

to find

> additional means to start healing my body. Thanks for information,

Sam.

>

>

> Re: So confused - which came first -

hypothyroi d or

> candidiasis!

>

>

> > I, too, have Hashimoto and severe candida, and whoel list of

> > parasites, fungus, viruses, and bacteria. My MD who practices

> > homeopathy told me that my off the chart heavy metals caused my

> > Hashimoto thyroid. Once the metals are out, it's usually

> > reversable. I also am allergic to all of my foods and am living

on

> > pork and zuccini only due to high toxicity and blocked detox

> > pathway. I now have a ND, a MD and a Bioset doctor to help me

along

> > the way. I agree with Katerine that stress and unhappiness were

> > really the starting point of my down hill spiral. Our body can

only

> > take so many stressors at a time. One more stressor would just

push

> > us off the edge. I just went through a course on stress and

anxiety

> > with 14 tapes by Mid West Center. I just now learn to be grateful,

> > slow down my pace, let go, and choose to be happy. Life is hard

for

> > all of us. But I am sure we all are learning valuable lessons in

our

> > journey. Today, I am very thankful that I can walk instead of

being

> > in bed.

> >

> >

> >

> >

> >

[Guest guest]

Good for you, . When you say, “it seems like I need to

be on LDN a little longer”, do you plan on stopping it? Glad to hear you’re not having any

problems with “C” these days <wink>.

Jenn )

From: low dose naltrexone [mailto:low dose naltrexone ] On Behalf Of Boudreaux-Ng

Sent: Saturday, November 10, 2007

7:48 PM

low dose naltrexone

Subject: [low dose naltrexone] My

experience

Hi everyone,

I introduced myself about 4 months ago, but have not posted since.

Now that I have been on LDN for 4 months, I thought I would add what

my experience has been. Quick background: dx 2005 when I thought I

was having a stroke on the way to the gym, went on Copaxone and

acupunture but hated the tissue breakdown the C was causing after

less than 2 years. Even though I have a lot of lesions, I haven't had

to deal with many symptoms other than some leg tightness and I am

very affected by heat. When I started on LDN, I started getting a

lot of " twangs " down my arm and legs, but I could tell I had more

energy. I didn't have any problems with dreams and I sleep like a

baby. I haven't pick up a cold from my toddler since I started which

is unusual, so I think it has to do the LDN. My greatest moment was

last week when I ran 3 miles which I haven't done since my daughter

was born. On a daily basis, I exercise, take suppliments, watch my

diet(not ready to give up my carbs and all dairy though), and pray.

Weekly, I get acupuncture, which is easy since my husband is an

acupuncturist from China.

Anyway, I am going for my next MRI this Friday. I am not expecting to

see a difference since it seems like I need to be on LDN for a bit

longer. I hope I do have a improvement since my neuro doesn't even

know I am on it and thinks I am still taking Copaxone. He as been

pushing Avonex since I was dx, but I refused. My last appointment,

he asked me if I was having any problems with the C and I told him no

(mainly b/c I wasn't taking it ).

Thanks everyone for this board it gives me great hope that I will be

able to halt my MS and continue to exercise which is my job!

Good health,

No virus found in this incoming message.

Checked by AVG Free Edition.

Version: 7.5.503 / Virus Database: 269.15.28/1122 - Release Date: 11/10/2007 10:41 AM

No virus found in this outgoing message.

Checked by AVG Free Edition.

Version: 7.5.503 / Virus Database: 269.15.28/1122 - Release Date: 11/10/2007 10:41 AM

[Guest guest]

,

I'm so happy to hear of your improvements after four months. That's

wonderful! I agree - you may need to on the LDN a bit longer before

comparing MRIs.

Beach

[Guest guest]

Dear , Could you please describe your "twangs" that you mentioned?? I've been on LDN for 7 months now and about a month ago I stared getting these weird shock like sensations down my R leg. Almost like a tuning fork thing. How long did it last? I'd greatly appreciate your input. Thanks for you update and my best to you on your course of LDN.JanetRRMS 1994LDN May;07 Boudreaux-Ng <nancboo@...> wrote: Hi everyone, I introduced myself about 4 months ago, but have

not posted since. Now that I have been on LDN for 4 months, I thought I would add what my experience has been. Quick background: dx 2005 when I thought I was having a stroke on the way to the gym, went on Copaxone and acupunture but hated the tissue breakdown the C was causing after less than 2 years. Even though I have a lot of lesions, I haven't had to deal with many symptoms other than some leg tightness and I am very affected by heat. When I started on LDN, I started getting a lot of "twangs" down my arm and legs, but I could tell I had more energy. I didn't have any problems with dreams and I sleep like a baby. I haven't pick up a cold from my toddler since I started which is unusual, so I think it has to do the LDN. My greatest moment was last week when I ran 3 miles which I haven't done since my daughter was born. On a daily basis, I exercise, take suppliments, watch my diet(not ready to

give up my carbs and all dairy though), and pray. Weekly, I get acupuncture, which is easy since my husband is an acupuncturist from China. Anyway, I am going for my next MRI this Friday. I am not expecting to see a difference since it seems like I need to be on LDN for a bit longer. I hope I do have a improvement since my neuro doesn't even know I am on it and thinks I am still taking Copaxone. He as been pushing Avonex since I was dx, but I refused. My last appointment, he asked me if I was having any problems with the C and I told him no (mainly b/c I wasn't taking it ). Thanks everyone for this board it gives me great hope that I will be able to halt my MS and continue to exercise which is my job! Good health, __________________________________________________

[Guest guest]

Hi ,

That's great news, but please do not go off the LDN. Things could deteriorate

rapidly if you do. Don't be fooled into thinking you're cured!

With best wishes,

Dudley Delany

dudley_delany

[low dose naltrexone] My experience

Hi everyone,

I introduced myself about 4 months ago, but have not posted since.

Now that I have been on LDN for 4 months, I thought I would add what

my experience has been. Quick background: dx 2005 when I thought I

was having a stroke on the way to the gym, went on Copaxone and

acupunture but hated the tissue breakdown the C was causing after

less than 2 years. Even though I have a lot of lesions, I haven't had

to deal with many symptoms other than some leg tightness and I am

very affected by heat. When I started on LDN, I started getting a

lot of " twangs " down my arm and legs, but I could tell I had more

energy. I didn't have any problems with dreams and I sleep like a

baby. I haven't pick up a cold from my toddler since I started which

is unusual, so I think it has to do the LDN. My greatest moment was

last week when I ran 3 miles which I haven't done since my daughter

was born. On a daily basis, I exercise, take suppliments, watch my

diet(not ready to give up my carbs and all dairy though), and pray.

Weekly, I get acupuncture, which is easy since my husband is an

acupuncturist from China.

Anyway, I am going for my next MRI this Friday. I am not expecting to

see a difference since it seems like I need to be on LDN for a bit

longer. I hope I do have a improvement since my neuro doesn't even

know I am on it and thinks I am still taking Copaxone. He as been

pushing Avonex since I was dx, but I refused. My last appointment,

he asked me if I was having any problems with the C and I told him no

(mainly b/c I wasn't taking it ).

Thanks everyone for this board it gives me great hope that I will be

able to halt my MS and continue to exercise which is my job!

Good health,

[Guest guest]

Hi Dudley,

I think we may have read it wrong. I think she means that she needs to be on the

LDN a bit longer [before the MRI will show a response].

Jenn

From: low dose naltrexone [mailto:low dose naltrexone ] On Behalf Of Dudley Delany

Sent: Saturday, November 10, 2007

10:07 PM

low dose naltrexone

Subject: Re: [low dose naltrexone]

My experience

Hi ,

That's great news, but please do not go off the LDN. Things could deteriorate

rapidly if you do. Don't be fooled into thinking you're cured!

With best wishes,

Dudley Delany

dudley_delany

[low dose naltrexone] My experience

Hi everyone,

I introduced myself about 4 months ago, but have not posted since.

Now that I have been on LDN for 4 months, I thought I would add what

my experience has been. Quick background: dx 2005 when I thought I

was having a stroke on the way to the gym, went on Copaxone and

acupunture but hated the tissue breakdown the C was causing after

less than 2 years. Even though I have a lot of lesions, I haven't had

to deal with many symptoms other than some leg tightness and I am

very affected by heat. When I started on LDN, I started getting a

lot of " twangs " down my arm and legs, but I could tell I had more

energy. I didn't have any problems with dreams and I sleep like a

baby. I haven't pick up a cold from my toddler since I started which

is unusual, so I think it has to do the LDN. My greatest moment was

last week when I ran 3 miles which I haven't done since my daughter

was born. On a daily basis, I exercise, take suppliments, watch my

diet(not ready to give up my carbs and all dairy though), and pray.

Weekly, I get acupuncture, which is easy since my husband is an

acupuncturist from China.

Anyway, I am going for my next MRI this Friday. I am not expecting to

see a difference since it seems like I need to be on LDN for a bit

longer. I hope I do have a improvement since my neuro doesn't even

know I am on it and thinks I am still taking Copaxone. He as been

pushing Avonex since I was dx, but I refused. My last appointment,

he asked me if I was having any problems with the C and I told him no

(mainly b/c I wasn't taking it ).

Thanks everyone for this board it gives me great hope that I will be

able to halt my MS and continue to exercise which is my job!

Good health,

[Guest guest]

No plans to stop, I just have heard that it could take up to a year b/f you see a MRI difference. __________________________________________________

[Guest guest]

The "twangs" aren't really like a shock but more like the tuning fork you describe and as quickly as it comes on it goes away. It's not bad enough to stop me in my tracks, I just notice it. Hope that helps. __________________________________________________

[Guest guest]

Hi, I just read the posts about all of the " shock like " sensations and I have a

comment.

I have Multiple Sclerosis and I had those EXACT same sensations (in my right

leg) last year

WHEN I WAS TAKING COPAXONE.

I have not taken any other MS drug and have not yet tried the LDN. I even

stopped the

Copaxone after about two months due to skin irritation. I actually reported the

" shock like "

sensations to a Copaxone nurse/counselor with their company and she tried to

blame my

MS and said that it couldn't possibly be connected to the Copaxone. Odd,

considering I

never had those sensations before or after taking the drug...

~ ;>

>

> The " twangs " aren't really like a shock but more like the tuning fork you

describe and as

quickly as it comes on it goes away. It's not bad enough to stop me in my

tracks, I just

notice it.

>

> Hope that helps.

>

>

>

> __________________________________________________

>

[Guest guest]

,

The fact you have MS means you should plan on using LDN for the rest

of you life.

Art

--

>

> Hi everyone,

>

> I introduced myself about 4 months ago, but have not posted since.

> Now that I have been on LDN for 4 months, I thought I would add

what

> my experience has been. Quick background: dx 2005 when I thought I

> was having a stroke on the way to the gym, went on Copaxone and

> acupunture but hated the tissue breakdown the C was causing after

> less than 2 years. Even though I have a lot of lesions, I haven't

had

> to deal with many symptoms other than some leg tightness and I am

> very affected by heat. When I started on LDN, I started getting a

> lot of " twangs " down my arm and legs, but I could tell I had more

> energy. I didn't have any problems with dreams and I sleep like a

> baby. I haven't pick up a cold from my toddler since I started

which

> is unusual, so I think it has to do the LDN. My greatest moment

was

> last week when I ran 3 miles which I haven't done since my daughter

> was born. On a daily basis, I exercise, take suppliments, watch my

> diet(not ready to give up my carbs and all dairy though), and

pray.

> Weekly, I get acupuncture, which is easy since my husband is an

> acupuncturist from China.

> Anyway, I am going for my next MRI this Friday. I am not expecting

to

> see a difference since it seems like I need to be on LDN for a bit

> longer. I hope I do have a improvement since my neuro doesn't even

> know I am on it and thinks I am still taking Copaxone. He as been

> pushing Avonex since I was dx, but I refused. My last appointment,

> he asked me if I was having any problems with the C and I told him

no

> (mainly b/c I wasn't taking it ).

>

> Thanks everyone for this board it gives me great hope that I will

be

> able to halt my MS and continue to exercise which is my job!

>

> Good health,

>

>

>

[Guest guest]

More proof that all who can should try to be off Copaxone. I reported burning feet, like I was standing in a blazing fire when I started Copaxone. I stayed on it for two months and most of the burning, blazing feelings are gone. The Copaxone nurse, kind as she was, aslo blamed it on the nerve damage in my feet. LDN/MS __________________________________________________

[Guest guest]

Art, I guess I didn't really type my first message correctly. I don't plan on ever going off LDN. I think it is a perfect compliment to my acupuncture treatments. I just meant that after 4 months, I did't think at this point, I would see a change in my MRI. I'm hoping I do so I can throw it in my neuro's face since he seems so hell bent on me going on Avonex. He even chuckles when I tell him that if I have any flare-ups, within 2 acupuncture treatments, I feel back to normal. Very close-minded. Luckily, I only see him once a year. Have a good and healthy week everyone. __________________________________________________

[Guest guest]

Hi All...I was diagnosed with RA and PsA after years of other dx including lupus

and mixed connective tissue disease.  I have been on many treatments from old

to new.  When my rheumatologist encouraged me to try the biologics, I was

scared of side-effects.  But I was so sick, in pain, and troubled mobility,

and with a sed rate over 100 and C Reactive Protein way high.  Several

biologics either just did not work, or stopped working, or I became very sick on

them.  But we kept trying. Since 2003 I have been on weekly injections of

methotrexate and Humira.  75% of the time I feel good with fatigue being the

most difficult to deal with.  For me, any potential risk of adverse

side-effects did not measure up to feeling like a functioning person most of the

time again.

My beloved Aunt June had RA for 40+ years  We were diagnosed at the same age

(39).  The damage to her hands and feet from RA was devastating.  All she had

for treatments most of her life were gold shots and anti-inflammatories.  I

often wonder how much better her life would had been if she had had the

treatments we now have.  She was a great lady who handled things with much

grace, but she had so much pain and crippling.  At age 80 or so she developed

nodules in her lung.  Two years later she had surgery for lung cancer (never

smoked).  She died at age 83.  She was brave and tenacious and how I wish she

had been blessed with better treatment.

I know I don't speak up much here (not like I did a few years ago : ) but I just

wanted to share my experience.

Love...

Cheryle, in Oregon...aka Tess

[ ] RESEARCH - Prompt aggressive treatment improves outcomes

in RA

 

Medscape Medical News

August 26, 2010

Prompt aggressive treatment improves outcomes in RA

Prompt aggressive treatment is the strongest predictor of remission in

patients with rheumatoid arthritis (RA), regardless of the presence of

poor prognostic factors, according to a new study published in the

August issue of Arthritis Care & Research.

" In the past, the treatment of RA aimed at a reduction of disease

activity to a low disease activity state due to a lack of effective

treatment, " write Wanruchaa Katchamart, MD, from the University of

Toronto, Canada, and colleagues. " With the advent of biologic agents,

the ultimate goal of treatment in RA is now remission in the early

stage of the disease before patients develop permanent deformities,

functional disability and RA-related systemic morbidity and

mortality. "

According to the article, biologic agents can suppress inflammation

and halt radiographic progression, but they also can cause adverse

effects that lead to discontinuation of the medication. In addition,

they are costly. Therefore, being able to identify factors that

predict remission early in the disease would help physicians tailor

their treatment plans to individual patients.

The aim of this study was to summarize the potential predictors of

remission in RA patients.

The researchers reviewed 18 prognostic studies that used multivariate

analysis to identify predictors of remission. They found a number of

independent predictors of remission, including baseline clinical and

laboratory characteristics and genetic markers, as follows:

• Male sex

• Young age

• Late-onset RA (occurring past the age of 65 years)

• Short disease duration

• Nonsmoker

• Low baseline disease activity

• Mild functional impairment

• Low baseline radiographic damage

• Absence of rheumatoid factor and anticitrullinated peptide

• Low serum level of acute-phase reactant, interleukin 2, and receptor

activator of nuclear factor κ B ligand (RANKL) at baseline

• MTHFR 677T alleles and 1298C alleles in the methotrexate-treated patients

• Magnetization transfer ratio 2756A allele ± either the SLC 19A180A

allele or the TYMS 3R-del6 haplotype in the methotrexate plus

sulfasalazine combination-treated patients

• Early treatment with nonbiologic disease-modifying antirheumatic

drug (DMARD) combinations

• The use of anti–tumor necrosis factor (anti-TNF)

• The concurrent use of DMARDs in the anti-TNF-treated patients

• Moderate or good response to treatments at the first 6 months

" Although all of the studies included in this review investigated an

independent association using multivariate analysis, the hypotheses of

these studies were usually based on the unreal assumption that the

association between the prognostic factors and RA remission is direct

and isolated, " the study authors write. " This model may be inadequate

to explicitly describe the complex relationship between prognostic

factors and remission for multifactorial and unclear mechanisms of a

disease condition like RA. "

These relationships need to be explored further in phase 3 trials to

better understand the complex prognostic pathways or processes of RA,

the authors conclude.

One author was supported by a Canadian Institutes of Health Research

Clinician Scientist Award; another holds a Canada Research Chair in

Knowledge Transfer for Musculoskeletal Care and has received

consultant fees, speaking fees, and/or honoraria from Schering, Roche,

Biogen Idec, PESI Healthcare, Wyeth, Abbott, and Abbott Canada.

Arthritis Care Res. 2010;62:1128-1143.

http://www.medscape.com/viewarticle/727525

Not an MD

[Guest guest]

Hi, Tess,

It's nice to hear from you again. I'm so glad that you feel pretty

well 75% of the time. I agree that the disease is much worse than the

medications. I'm so glad that Enbrel continues to work so well for me.

Sue

(You'll always be Tess to me, by the way.)

On Aug 29, 2010, at 3:54 PM, mercycove@... wrote:

>

> I know I don't speak up much here (not like I did a few years

> ago : ) but I just wanted to share my experience.

>

[Guest guest]

Thanks so much for sharing your experiences and the story of your

beloved Aunt June, Cheryle.

Not an MD

On Sun, Aug 29, 2010 at 2:54 PM, <mercycove@...> wrote:

>

>

> Hi All...I was diagnosed with RA and PsA after years of other dx including

lupus and mixed connective tissue disease.  I have been on many treatments from

old to new.  When my rheumatologist encouraged me to try the biologics, I was

scared of side-effects.  But I was so sick, in pain, and troubled mobility,

and with a sed rate over 100 and C Reactive Protein way high.  Several biologics

either just did not work, or stopped working, or I became very sick on them. 

But we kept trying. Since 2003 I have been on weekly injections of methotrexate

and Humira.  75% of the time I feel good with fatigue being the most difficult

to deal with.  For me, any potential risk of adverse side-effects did not

measure up to feeling like a functioning person most of the time again.

>

>

>

> My beloved Aunt June had RA for 40+ years  We were diagnosed at the same age

(39).  The damage to her hands and feet from RA was devastating.  All she had

for treatments most of her life were gold shots and anti-inflammatories.  I

often wonder how much better her life would had been if she had had the

treatments we now have.  She was a great lady who handled things with much

grace, but she had so much pain and crippling.  At age 80 or so she developed

nodules in her lung.  Two years later she had surgery for lung cancer (never

smoked).  She died at age 83.  She was brave and tenacious and how I wish she

had been blessed with better treatment.

>

>

>

> I know I don't speak up much here (not like I did a few years ago : ) but I

just wanted to share my experience.

>

>

>

> Love...

>

>

>

> Cheryle, in Oregon...aka Tess