Rheumatic

I have been wanting to mention that I notice that we have several
members from the good old United Kingdom out there. I can't help
but feel a special connection to all of you. I am a native of Miami
but look as though I just got off the boat from Ireland. In fact,
my mothers family is from County Cork, Ireland and my fathers family
hails from Redruth, Cornwall, England. Was'nt always easy
explaining my cornish pastie in my lunch box as a child to the other
children and thier bologna or peanut butter sanwhiches. Humorous
now though. It is also with humor that I express to you a sense of
conflict with my English/Irish roots. How can I help it ? I have
read all of Frank McCourt's books(Angela's Ashes twice). The
downside of communicating like this is that you can't hear my
playfully sassy redhead spiirted tone while expressing this. On the
serious side, I have been wondering about the availibilty and cost
of the Biologic medications in the UK. The USA is known for having
extrodinay
pricing on it's meds. For example Enbrel can cost $10-12,000
dollars a year. I know that the goverment provides health care but
again wonder abouht the cost there and are Biologics being readlily
avialable to those who need them? Warmly, Carolyn

hi chi
sorry to hear this. when i stopped the minocin my RA came back worse
too. i am on zithromax now 500 mg MR. having a bit of improvement but
still too early - 11 weeks. have you done the cleanses and dietary stuff
ethel on tis list recommends? also some ppl have to say on a
maintenenace dose - 100 mg MWF for life. i woudl go back on dose you
were at before and when it's effective taper to maint. also do coclon
cleanse, parasite cleasne, liver cleanse, eliminate yeast, and cut out
grains, alcohol, sugar, caffeine.
you coudl also consider marshall protocol. check out their website.
best
monique

The following is addenum to my last posting. Okay, bear with me
on a quick synopsis of the brain. Class are you with me? Ha, Ha.
Essentially, the brain is a very complex message center dependent
upon even more complex balances of chemicals and proper function of
it's tramission processes to achieve it's or your goals. Are you
still with me? C'mon wake up! Now most of the tasks that the
brain atempts go unnoticed as we had previously "downloaded" the
required data starting at childbirth and "updated" through out our
childhood and into adulthood,albiet to the adulthood process
certailnly not as quick as the previous two. What I now
offer to you are much of what I had learned in nursing and in fact
drew upon my previous learning esp. that pertaining to the rehab of
stroke victims and brain injury patients. I realize that this is
not the case with the "brain fog" that many have been posting lately
but the "rehab" exercises will likely benefit any struggle in this
area. A doctor should evaluate these symptoms and I welcome you to
present the "exercises" for his/her review. Please forgive me,
I want to outline this and my "tab" and "shift" buttons won't allow
me. 1) I now think of my brain as a unruly child and treat it as
such. I truly have to believe "Your'e the brain, I'm the boss".
If I don't do the mental excercises that I'm about to describe my
brain will carry me into a mass of tangled thoughts that are like
mental quicksand to get out of. 2) I have become a timer
junkie. Yep, I mean that I use timers for almost evrything I want
to accomplish. My favorites are the like the digitial one on my
oven that give my brain the instant feed back that it requires.
Before you think that I am nuts, please let me explain. I can
become easily distracted. Just doing the simplest of things can
endup in "mental quicksand". Even while relaxing and having the
remote in my hand and channel surfing I can end up stalled on a
hispanic soap opera or even ESPN for crying out loud! I must give
myself a task. I may perhaps, stand back look at a room , ask
myself what needs to be done most.For example: Okay, Carolyn for
the next 15 min. you are going to work on the kitchen counter. If
something needs to be put in another room, put it to the side. Do
not leave the room until the 15 min. is up. This is your focus,
Carolyn. Work a little and look at the clock. If I'm on a roll
and I want to extend the time for another 15 min. I can. Because
I'm the boss. I usually work on two areas of the house at a time
and assign myself "time", use the timers and reward myself
with "breaks" again, with the timer. What seems constraining
at first is actually liberating. I am by no means cured. All you
have to do is say "hi" to me at work and I have to acess the "page
back" button in my brain. But my brain and I have learned to make
comprmises. I'm able to access that "page back" button much quicker
than before. I get "stuck' at times but rarely the "quicksand"
events. This comprimise (of sorts) has also allowed me to have a
bit of humor for the episodes and often make a joke of it. "Gosh, I
knew that I should'nt have stayed out so late last night watching
those Chippendales". The one thing that my brain is absoultely
unyielding on is as though it insists on saying, "Hey, Carolyn with
out giving me caffeine and a crossword in the morning, uh this
waking up thing, it's just not going to happen. 3) Think about
it, have you also found that your sense of intuition has not been
utilized much lately. Yes, girls I mean you. We have the upper
hand in this dept. and we all know it. My text is again going on
too long but I will happily respond to any that are interested on
opening this dialogue up. When I earlier mentioned that I
stand before a room to prioritize my tasks I mean it. I listen to
my gut. I have to fight off the "Parlyisis through Analyisis". I
have only touched upon this topic but will hopefully leave a few of
you with some helpful info and hopefully even more of you at least
giving me the benefit of the doubt that I or this text may not be as
crazy as appearences seem. Love to all, Carolyn

Hi Sue, I had the lithotripsy done under general anesthesia. They
gave me a paper bathing suit to put on under my gown but of course
the shorts only came to my ankles so that didn't work. Afterward I
felt like I had been hit by a truck, but it worked. After I had my
second knee replacement my back flared so bad I could not do most of
the therapy for my knee. I just finished 2 months of therapy for my
neck that did nothing. I have spinal stenosis and large bone spurs in
my neck and the vertebre are way out of place. The therapist could
not get them back in place. Well enough about me. Good luck with the
lithotripsy. Let me know how it goes. Maureen

Hi Chi,
Ive used Wobenzyme products for years. I use the tablets both for
digestion and inflammation. My doctor recommended taking five each morning
and each evening on an empty stomach to help with the systemic inflammation,
and to take three with each meal to help with digestion. I purchase them at
either swansonvitamins.com or vitacost.com depending on which is less
expensive. Ive also tried to crème and it helps with aches and pains
especially from pulled muscles. I hope this information is helpful to you.
El
_____

Hello Everyone, Carolyn here. For several weeks I was unable to
use the keyboard but read with great interest viewed the many
interesting postings and topics that you shared. Several of you
have been experiencing an increase in pain and symptoms due to the
winter condtions. Okay, I have the answer for that. Why don't
all of you just pack a bag and come to Miami, where I live. Why
not everyone else does? Of course putting up about 1500 of you may
be a bit cramped in my house, but we'll just have to make the best
of it, won't we? It feels nice to be a playfully sassy redhead
again! Onto a more serious reply regarding the many of us that
could start our own support group for "brain fog": I have noticed
that many of you are women. Having a background in nursing I of
course first consider as to if you have informed you physicians for
this being evaluated. I have no info regarding this being a pattern
with PA or any potential side effects with meds commonly described
for it. What I did notice in myself and prior to the onset of PA
was fairly subtle symptoms occuring with the onset of
perimenopause. Many women report memory changes at this time. It
is affectionately referred to as "CRS" or "Can't remember s--t. The
previously subtle syptoms did take a rapid advancement with my PA
though. I believe that I have some very useful tips on how to
deal with this. I will follow with that info in a seperate posting
in 1-2 hrs. The reason being that I want it to be in more of a
consise format. Being included in this text would not achieve
that. Until Then, Carolyn

I took Trilisate for along time (6 months). It helped at first, but
finally I began to lose hearing and have cognitive problems. I never
did get tinnatus, so my doctor said it couldn't be aspirin toxicity
but when I went off it, my hearing and cognitive abilities came
back. Linda Beckman

Gee, maybe we could start our own Olympic Team. Now what could we call it??
(lol)
Have a good night everyone.
Barb

Has anyone taken the above non-acetylated salicylates (there might be
some other brand names also)? If so, how did they work for your pain,
esp as compared to Tylenol, regular aspirin, prednisone, and other pain
relievers?
How do they compare in terms of GI irritation, asthma triggering, and
other side effects?
For those of you who have taken both,are there advantages of one over
the other? Thanks - Les

Hi Fran
I had my stitches out on Monday and they say it is coming along great. They
will go in and remove the gortex material protection in about 3 weeks and
then we will know if the bone graft took. I still remain on a soft diet and
need
something to crunch. I miss my all time favortie snack, fat free popcorn.
I was doing real good in the pain department, but it decided to find me again
today. I wonder if it is the dampness in the air. I was much better in the
single digit figures like 0 to 5. The air seemed drier. I just try not to
think about it and do some productive sewing. I just get so upset when I can't
do what I used to.
Anyway, take care.
Barb

es anyone here have a consistently low sed rate
Hi Allison,
yes...my sed rate never seems to match my symptoms. I actually
sustained very bad joint damage while maintaining a low sed rate.
This is why I believe the sed rate is just a clue for the docs and
not a clear indication of disease activity at all. The rheum I have
now doesn't even test it. I have just had the CRP, another
nonspecific test for inflammation, done once while I was doing a drug
study. It was mildly elevated. A bone scan several weeks later
showed many "hotspots" of activity. A while back...we did a small
survey with Frank D.s help and found little correlation between sed
rate and severity of pa. Of course we can't say our small sample was
significant but it was interesting.
Joint damage with no swelling and low sed rate are one of my
contiuing themes. I hope to help other people avoid the extent of
damage I have. I must add, though, that I have been diagnosed with
the mutilans subset. I don't know the difference if any of my subset
to others. I know I relate to almost everything posted on this
board.
....end lecture lolol!.......
best wishes to all,
Marti

Hi, the text on this e:mail was deleted. Have no idea what was sent!~~~Dolores
peggy marshall <friendly45036@...
Note: forwarded message attached.

Dear Allison, My sed rate has been normal since all my problems began. Of
course, when things got really bad, the dumb rheumy I was seeing at the time
put me on predinsone before he did the sed rate. Evidentially predinsone
changes the outcome of the test and there wasn't a real reliable way to
check it after that. I've been on predinsone for almost 4 years, so as soon
as I get off I plan to have it checked again. The test that was the best
diagnostic tool for me was a bone scan. My inflammation lit the screen up
in almost every joint.
Sometimes these tests just don't give us the answers we want. I know you
don't want a bad result, but it's also frustrating when the tests don't back
up your pain. I hope you find some answers soon. Love, Fran

Hi, I too have pulmonary fibrosis and have been on A/P for almost two years. If
you have been on Minocin only, for A/P treatment, it may be time to look at
other versions of A/P. After being on Minocin only A/P, I started today, my
first day, on M/P which is another version of A/P, but with pulsed Minocin and
Benicar. The original A/P that I think that Dr. Brown started was with IV
clindamycin and a combination of other things. That may be the one with a combo
of peroxide baths and taking aloe vera. I read about it recently under,
"Frequently Asked Questions About Antibiotic Therapy" Check out the different
protocols. It doesn't hurt to keep on trying. Whatever you do, keep your
immune system up and do not let anyone put you on immune suppressants. These
diseases are not easy to live with or control. I wish you well~~~~Dolores
2468 8462 <sandykayball@...
function tests show that the pulmonary fibrosis is
getting worse after being stable for 4 years.
would those of you who have pulmonary fibrosis share w/me what you have done
besides the AP (I've been on AP for 8 years)? E.G. diet changes,
supplements, breathing exercises, oxygen, walking, etc.?
I would appreciate all the help I can get. thx.
Sandy Decker

Hi Everyone, I'm intereste in isotonic also. Thank you Roni for putting this up
on the site. Dolores
"rbarna dejazzd.com" <rbarna@...
Lately I have been reading the value of taking isotonic supplements? Does anyone
on the group take isotonic supplements? I am not interested in any of the
multi-level marketing companies that I've seen, but like what I read about the
benefits of isotonics.
Anyone have experience with these? Appreciate your input/advice.
Thanks,
Roni

Dear Dick, Im sorry nothing has improved on your back. So far the
injections seem to be helping me. They arent fun, but Ive decided its
worth it in the long run. I hope they find some answers for you soon. Hang
in there and take care, Fran
*
Hi Fran, nope the back is about the same. They still haven't
figured out what is causing it. I will be going in for more tests
next month.
The Enbrel works great for me and have been on it for about 2 years
now. This was just my first shot with the new 50mg shot. Time will
tell if it works just as good. They say it will.
Just taking it easy now and not doing much.
Take care and Thanks for asking.
Dick

Hi Everyone,
I am sorry I haven't been around much on the board. I started back to
college again taking 4 online courses. After this I only have 2 more
to get my Psychology Degree. This has taken me 20 years to complete.
Everyone in my classes are in their 20's and here I am at 45 still
going. I refuse to quit. Even though I had to resign from my job, I
figured I can still try to finish my degree online.
Update-
I had my second Remicade infusion and no side effects. However the
pain is still unbearable in my left knee and hip. My hands are still
very painful and stiff and make typing sometimes impossible-which is
interesting with online courses. At 45 years old I was just inducted
into the National honor society in Psychology with a GPA of 3.8.
Last semester I had to drop becuase physically I could not do it at
all. My emotions and stress level was very high because I knew I
could no longer work and had to leave a job I love dearly. As most
of you know I resigned my position, and am applying for SSD.
SSD is trying to tell me I don't have enough work credits since I
worked for the school district for the last five years, and they
didn't take out social security. I am trying to get expeditied
reinstatement of benefits because I was on SSD until 2001. They said
I didn't have enough work credits before 2001, I said how could I if
I was on SSD. The law states that if you become disabled again within
5 years of your last check you are entitled to expedited
reinstatement of benefits. Any way this is going to be a long battle.
It is just so stressful dealing with these people.
Anyway, if you don't hear from me to often, It is because I am just
trying to get school work done. It seems to take me so long to read
and process information now, never mind writing and typing
assignments. I will try to read posts as often as possible.
Pat

HI Everyone:
Lately I have been reading the value of taking isotonic supplements? Does
anyone on the group take isotonic supplements? I am not interested in any of the
multi-level marketing companies that I've seen, but like what I read about the
benefits of isotonics.
Anyone have experience with these? Appreciate your input/advice.
Thanks,
Roni

Thanks! In my case I might have more to learn because my doctor is
not experienced at AP. L.

Yes, my husband took me there in 9/2001 to see DR Franco.....I refused all
xrays...only had SD at the time...and did do all the labs...learned nothing new
but to be fair...my labs had been done extensively by my long time AP
physician...Dr. Franco basically, had nothing new to offer...He was very nice,
considerate...but again...I learned nothing new...and he offered nothing new for
me.
Debbie

---
Hi Martin,
Thanks so much for your kind and silly words-I missed your sense of
humor. It really feels weird and really nice to walk again without
pain. I feel like a new person for now anyhow. I've been praying
that the PA doesn't attack any other joints.
God Bless, Sue.

Hi Linda. My wife goes to the Riverside Center. Email me privately and I'll
fill you in on our experiences. Phil

Have any of you been to the Arthritis Center in Riverside, CA? I am
thinking of going there, and would like to hear about the experience
of others. Linda

---
Hi Fran,
Thanks so much for your kind words-I really miss your sense of
humor!! I did get alittle worried because my husband acted like he
didn't want me to come home! I'm happy to be home even though I have
a mess to clean up-I'm doing it alittle at a time. You wouldn't
think a man and two teenages could be so messy!! The Ortho. Dr. told
me some good news about having a artificial hip-one less joint that
the PA can attack. I didn't realize how much pain I was in until the
damage hip was gone!!
Thanks again and God Bless, Sue.

all
let's talk about euric acid , and what the special diet and the
medicaments to cure it .

Dear Group,
Too much uric acid can lead to gout, a form of arthritis. Please see
http://www.med.umich.edu/1libr/aha/aha_gout_crs.htm
For diets to combat gout, please see
http://arthritis.about.com/cs/gout/a/foodstoavoid.htm
http://www.goutcure.com/goutcausfood.html
Sincerely, Harald

---
Hi Ks Di,
Thanks for the kind words. I had people at the hospital ask me what
was worse with the stone pain/labor-you are right about at least
getting a beautiful baby with labor-I think the stone pain because it
is constant and never letting up. This time I had the awful
vomitting and back pain. I hope you've been well.
Thanks again and God Bless, Sue.

---
Hi Maureen,
Thanks so much for the kind words and information about your kidney
stone experience. It was my left kidney also and mine was almost
completely blocked also. A nurse that was taking care of me wondered
if the stone problem was related to my PA-I told her I wouldn't doubt
it. I'm going to talk to my Rheumy this week about it. Was the
Lithotripsy painful? I have to have that done next Saturday. I hope
you've been well. My PA hasn't flared too bad during my hip/kidney
problem-even though I have had to be off my Enbrel twice now with my
surgery and now with this infection I had with my stone problem.
God Bless, Sue.

Here's a puzzler:
Does anyone here have a consistently low sed rate
while still experiencing symptoms?
My sed rate has measured in the single digits for as
long as this rheumy has been tracking it, despite
repeated flares and symptoms.
-- Allison
=====

A few people here have recently expressed fear over taking some medications
because they are afraid of the side effects. Here is an excellent comment on
this issue taken from the Arthritis Foundation's web site:
Scared By Side Effects
Q: After reading the pharmacy sheets listing side effects of the medications I
take for rheumatoid arthritis (RA), I can't help but wonder if the "cure" is
worse than the disease. Is it possible I'd be better off skipping the
medications and taking my chances with the RA?
A: I would really hate to see you - or anyone with a potentially disabling
disease such as RA - completely give up medications. But I certainly can
understand your concerns: No medication is completely safe, and the potential
risk of side effects can be frightening. Anytime you interfere with one bodily
process you may interfere with others - sometimes in undesirable ways. But the
dangers of untreated RA, in most cases, far outweigh the risks of the drugs used
to treat it. Each day, medications ease pain, prevent joint destruction and
improve the lives of countless people with arthritis and related conditions. In
some cases, medications can literally save lives.
The pharmacy sheets are provided as a service to make you aware of side effects
that can occur with a certain medication. Keep in mind that the key word here is
"can." You shouldn't assume that the listed side effects will necessarily occur
in you. Even if you do experience one or more side effects, you may be able to
reverse or halt them by stopping or changing medications. In most cases, no
action is needed; the side effects resolve on their own.
Many factors can influence how your body reacts to a drug. Some are largely
controllable - such as when and how you take your medicine. Factors that can't
be changed, such as your age and other health problems, may be compensated for
with choice of medication or a dosage adjustment. Life is full of risks.
Sometimes we have to risk experiencing a side effect to gain a medication's
benefits. The key is weighing risks against potential gain. Your doctor can help
you weigh those risks and choose the drugs that provide the most help and do the
least possible harm.
There are also several things you can do to reduce your risk of drug side
effects. Here are a few:
Let your doctor know about any other medications you are taking - even
over-the-counter (OTC) ones- because some can add to the side effects of others.
For example, taking aspirin along with a prescription nonsteroidal
anti-inflammatory drug (NSAID) can increase your risk of stomach ulcers and
other side effects.
Don't underestimate the power of nutritional supplements. Nutritional
supplements, too, can affect the way a drug works. In some cases - such as
taking folic acid along with methotrexate - vitamin supplements can reduce the
risk of certain side effects. In other cases, taking nutritional supplements or
herbs in addition to prescribed medications can interfere with the action of the
medication or even enhance its potential side effects.
Find out if there are certain foods you should eat or avoid while taking a
medication. Most drugs, including NSAIDs, should be taken with food to reduce
the risk of stomach upset. For others - such as minocycline, an antibiotic that
is being used increasingly to treat RA - taking with food can decrease the
drug's absorption.
Forgo alcohol - it can add to the side effects of most drugs, from analgesics to
antidepressants. If you can't or don't want to give up alcohol altogether, set a
limit of two drinks (including beer) per week.
Ask your doctor to prescribe the lowest beneficial dose of a drug and never take
more than the prescribed amount. Many side effects are related to dosage. High
doses of glucocorticoids such as prednisone, for example, can cause a wide range
of side effects, including fluid retention, fragile bones and increased
susceptibility to infections. Low doses, which are often effective in managing
inflammatory arthritis, have a low risk of side effects.
Take the drug at the time designated by your doctor. Timing, in some cases, can
influence a drug's side effects. For example, taking the osteoporosis drug
alendronate when you get up in the morning, rather than before lying down at
night, can cut the risk of esophageal ulcers. Timing can also influence some
drugs' wanted effects. By taking a drug at the optimum time, you may actually be
able to reduce the dose and, thus, the risk of side effects.
Never stop taking any medication without consulting your doctor. A drug can't
help you if you don't take it, but abruptly stopping a drug can hurt you. The
dosage of drugs such as prednisone, for example, must be tapered to avoid
serious adverse effects.
Let your doctor know if you suspect a side effect. He can determine whether the
side effect requires treatment or if discontinuing a drug or perhaps educing its
dose is in order.
Doyt L. Conn, MD, Rheumatologist

The question was posted do you have liver enzymes and Kidneys checked
while on Zithromaz? The answer is yes. Hepatic (Liver enzymes) -it is
important to check also a CBS as some patients can go Leukopenic (Low
white Blood Cell count) on Zithromax Most likely this will not be a
concern with the lower doses given on the Proticol on this board, but
nevertheless, still important to check. Adjunct Professor Emeritus,
Carol Fisch

Hi Sharron,
Although I have been very successfully treating my PA with MTX, I too
find that standing for long periods tends to give me back, leg & foot
pain.
Just another way to stress our bodies I guess.
Stay Well,
David

In a message dated 1/20/2005 6:09:52 A.M. Eastern Standard Time,
jerredawson@... writes:
- went for spa treatments and found two wonderful ones. The best was
cranial/sacral therapy.
Hi Jerre...where did you go for this? I am going to Vegas next month and
want to try it out!
Rachel

--- Costello Family <costello@...
Di,
The snack sounds wonderful! I've been doing something
similar. When I gave up wheat, I also gave up sugar
and corn syrup. So, instead of eating cookies (we
serve them to our students everyday), I've been eating
small servings of nuts, trail mix, or an apple. An
ounce or two is more satisfying than a cookie ever
was! And the best part -- I've lost 9 pounds since
mid-November (despite the Holiday goodies!)
I've found the trail mix at the healthfood store
(Whole Foods) is more cost effective -- and more
interesting -- than anything I found in the regular
grocery store.
-- Allison
=====

Hi Jerre,
I almost answered you first mail before reading the second one. I was going
to say how great it was that you were doing so well and you were.
I'm sorry that this happened to you. Its a terrible thing to happen when you
were probably feeling so good about things.
Just know that we are all behind you as you start your come back from this
latest setback and you WILL come back. You have the attitude.
Keep in touch Jerre and let us know how you are doing.
Take care and good luck,
Martin.

Dear Sharon, Ive been going through a rough time with my back also. Have
you had an MRI done of your lumbar spine or at least a cat scan? Until my
doctors saw the MRI of my back and realized just how bad it actually looked,
no one really paid much attention to my back pain either. I couldnt stand
for even 30 seconds it got that bad after awhile. I got to the point where
the only place I could tolerate the pain was in my recliner. Ask your
doctor about an MRI if your insurance will cover it and hopefully youll get
some answers. Until you do that, knowing it is your spine or PA is almost
impossible. Good luck and I hope you get some answers soon. Love, Fran

Dear Dick, I hope the new Enbrel works for you. Needles are never fun no
matter what size or who is at the other end. I wanted to ask if your back
is any better or if you ever got any answers to your reasons for the back
pain? Are you still having numbness or nerve like pain? So far my back is
much better since the injections, and Im keeping my fingers crossed. Hope
you are doing well. Love, Fran

Judy,I am still using the foot pads periodically, mine are much lighter
now...and I seem to be feeling better...
Debbie

Hi Fran:
I am so happy something is working for you. Will be saying a prayer.
I know from experience that the first few days after can be worse, but
usually is so much better after.
Take Care
Barb

hi edith
sorry to hear things are not working as well. have you also done dietary
things like cutting out all sugar, gluten, dairy, alcohol, caffeine?
that can help too.
i take zithro 500 mg MR but am not on mino anymore. minoe at 200 mg a
day worked well for me for 3 years but then i developed a sensit to it
and had to stop it and then RA returned. for 1st 5-6 weeks i herxed
badly on zith. major pain everywhere but i knew that others had
experienced this too and then got better so i kept at it. at 8 weeks am
starting to have some good days so think i am getting somewhere. are you
also taking copious probiotics? 3x the usual dose is what dr f
recommends. i didn't do that on mino and think i ran into trouble as a
result. now i take a lot.
i know judy on here sees dr b and she takes doxy and zithro so she coudl
potentially help too.
best
monique

Hi, I couldn't finish before. I have to share my computer with my husband til
we get home.
So - First day skiing second run on the baby mountain, my ski caught in lumpy
snow at
the edge of the run and I fell. My binding on my right ski didn't release and
stuck in the
snow. I could hear the bones snapping as I twisted around. I called to my
husband and he
took off for help. I lay completely still for the 20 miniutes it took for the
ski patrol to
come. 12 hours later I woke up from 5 hours of surgery to repair all the
damage. At this
point I don't know all of it except 2 spiral fractures and a third fracture and
bone grafts in
my knee.
I was lucky my Enbrel and Mtx injections were due the next day. Needless to say
I am only
on vicoden right now. That was nine days ago and I still am in Idaho and won't
be able to
go home for another week. I am in a cast and wheelchair with ocasional forays
with the
walker but have to wait until I get arm platforms to use it more than the wheel
chair. But I
am oddly calm. Laying face down on the mountain - waiting - and handling the
pain and
cold something happened to make me realize that I could make it through
anything. This
site used to scare me because it showed what could happen to me in the future.
Fran, I
think I can now understand your grace under pressure and your use of humor and
laughter and I want to thank everyone here from the bottom of my heart.
Jerre

Hi All,
Been away from the group for about two weeks. First the Good News. The Enbrel
and mtx
combined very well after about two months. Stiffness gone. Some enery back.
Hand
healing from carpal tunnel and basal joint rebuild. Rhuemy and hand surgeon
said ok to
try skiing again. I know that is a far stretch for most of you and I almost
feell guilty
admitting it.
We went first to Las Vegas. Fun but I don't gamble and try not to drink much.
Sooo...I did
my favorite thing - went for spa treatments and found two wonderful ones. The
best was
cranial/sacral therapy. For the first time in Years I had no pain in my neck
except when I
pressed on the spots where the oa is. I couldn't believe it! I felt more than
good. She also
adjusted my lower spine (coccix?) and for the first time in 30 years I was
walking evenly.
Each step the same length as every other. I intend to continue with this
therapy when I get
home. Has any one tried it?
The other fun thing that I loved and would have installed in my bathroom if I
wasn't on a
well was a waterfall shower. Tons of water pounding down on those spots between
my
shoulder blades that my kids used to walk on. WOW! Beats my tennis balls all to
bits.
Part II is what happened skiing and I will write more about that later.
Jerre

Edith,
I took the Zithro 3x a week for a little over a year
and a half then cut it back to twice a week then down
to once a week and now I do not take any. My
suggestions is to take one Zithro on Monday and one on
Wed or Thur. The great thing about Zithro is that it
is long acting so it stays in you system for a longer
period of time. If you have to take it for an
infection you only take one a day for 5 days but it
keeps working for the next five days fighting the
infection. I'm not so sure that the Mino is necessary,
but you will have to experiment with that, since we
are all so different.
I cannot say enough about how well the Zithro worked
for me. I have been off al treatment for over three
months now and in remission, playing tennis,
whitewater Kayaking, looking forward to doing a bit of
downhill skiing the winter and next spring.
If you have any question please feel free to ask.
Take care,
Robbin

so if anyone knows of any other chatrooms, let us have the site names
Hi Margaret and all,
I belong to a fun group made up mostly of people who also post on
this board. It is a smaller, unmoderated group and is very active.
It serves a very different purpose for me than this excellent one as
we frequently go off topic, share our artistic interests,and compare
Aussie and American sayings and recipes. It's good for people like me
who are sometimes nearly housebound. All are welcome. All we ask is
that you "be nice". :

welcome back, Sue!
I'm happy to hear your hip surgery went so well. Sorry about the
kidney stones,eeww...good luck with your ultrasound procedure!
best,
Marti

For those of you asking for books, Rodale Press (author of Prevention and
Organic Gardening) just sent me a notice for a new book. The ad reads:
can't lose weight, feel so sluggish, so forgetful, craving food, don't
sleep, feel so blue, vision, mind feels mushy....
Sounds like all of us. The book is The Sugar Solution. I don't think I
will order it--I already had to give up wheat!!!!
The other tip is a snack I bought at my health center and then made up my
own version: mixed unsalted nuts, raw almonds, dried mixed fruit, dried
cherries, dried blueberries, peanut butter chips, dark choc. chips. It is
wonderful and pretty darn good for you. I keep some at school and some at
home. It is a quick energy boost and satisfies my sweet tooth.
Ks Di

Sura sounds like it! welcome to the club. Lynne

Hi Sue, congratulations on your new hip!! I had both knees replaced in 2002. I
also have had kidney stones for the last 15 years. They are terrible!!! My last
one I had I almost lost kidney function in my left kidney. It was the size of a
football. I had to have stints put in right away then had a procedure where they
tried to break it up but it didn't work so I had to go for the lithotripsy where
they put you in the bath tub.That one worked. Good luck!! Let us know how it
goes. Maureen
susieesue <susieesue@...
Hi everyone,
I'm finally back after being gone for longer than a month. December
6th I had my total hip-piece of cake!! After having the two
surgeries previous for my hip with plate and screws-the recovery was
awful painful-the total hip recovery wasn't half as bad and now I am
walking without a walker and no wheelchair!! After the surgery I
stayed with my Mother in law until I could come home and take care of
myself and then you wouldn't believe what happen!! I had two kidney
stones wanting out and the pain in the back and front was unreal. I
was so sick to my stomach I vomited for three days straight-I felt
like dying or wanting to die!! Do anyone else have these? I'm on a
low Oxalate diet. No caffiene at all. No chocolate, blackberries,
beans, dark greens like Spinach. No tangerines, etc. I still have
two huge kidney stones in my left kidney and have a stent in there
for now-which is painful on it own. My Urologist is going to have me
have this ultra sound type thing like a bathtub which breaks up the
kidney stones-I have to sit in there for about three hours to have
this done. I've always been a Diet Mt. Dew drinker and consumed
about four cans a day, now I'm drinking ice water and juices I can
have. Boy not having caffiene is so strange to be without. I could
have gone caffiene free pop, but I wanted to make a clean break
altogether.
I have missed everyone and see there are new ones!! I hope everyone
has been well!!
God Bless, Sue (susieesue).

Hi Christine;
If you have a good rheumy willing to help with AP,stick with her.I
had one who did not know much but was willing to help until I found as
AP doc 2 years ago.Sounds like your AP doc does not know anything.You
are extremely likely to herx and will have to play around with minocin
dosage until you hit the right one and may have to use other antibiotics
with it.They people on this board and Roadback/s will help you
along.When you go to Roadback make sure to read the posts done by A
Friend.This girl is better than any doctor....in my opinion. Lynne G/SD

Hi everyone,
I'm finally back after being gone for longer than a month. December
6th I had my total hip-piece of cake!! After having the two
surgeries previous for my hip with plate and screws-the recovery was
awful painful-the total hip recovery wasn't half as bad and now I am
walking without a walker and no wheelchair!! After the surgery I
stayed with my Mother in law until I could come home and take care of
myself and then you wouldn't believe what happen!! I had two kidney
stones wanting out and the pain in the back and front was unreal. I
was so sick to my stomach I vomited for three days straight-I felt
like dying or wanting to die!! Do anyone else have these? I'm on a
low Oxalate diet. No caffiene at all. No chocolate, blackberries,
beans, dark greens like Spinach. No tangerines, etc. I still have
two huge kidney stones in my left kidney and have a stent in there
for now-which is painful on it own. My Urologist is going to have me
have this ultra sound type thing like a bathtub which breaks up the
kidney stones-I have to sit in there for about three hours to have
this done. I've always been a Diet Mt. Dew drinker and consumed
about four cans a day, now I'm drinking ice water and juices I can
have. Boy not having caffiene is so strange to be without. I could
have gone caffiene free pop, but I wanted to make a clean break
altogether.
I have missed everyone and see there are new ones!! I hope everyone
has been well!!
God Bless, Sue (susieesue).

Hi everybody,
I just wanted to post a quick note to let everyone know my back is better.
At least I think it islol. I saw my pain doctor yesterday and he was so
pleased with the result from the injection into the nerve root, he decided
to take on my whole lumbar area. He also had the actual MRI films and he
decided that since so many areas were bad we needed to hit them all to try
and stop the pain. Silly me, I thought he was going to do one vertebrae at
a time, but once he got me on the table, I was doomedlol. He did a series
of 6 injections on each side, so I managed to make it through 12 injections.
These seemed to hurt more this time. I guess I dont have the padding on
my spine that I have in my hip or back area. The worst ones were the ones
at the top of my waistline, and it felt like they were sticking a 4-inch
needle in my spine. My fun loving doctor, said that was because its was
what he was doinglol.
I was pretty worn out by the time I got home and fell asleep in my recliner.
The remarkable news is I slept in bed all night last night. First time in
almost a month. So Im hopeful this time Im going to be better. I still
have sharp pain from time to time, but I think its just from the injections
and will go away with time. I know it was rough, but in the long run I
think it will be worth it. Ill know more in a few days.
I wanted to say thanks to everyone who has been so supportative and so
sweet. Ive not been able to keep up with the new people who have joined
and I just wanted to say Hi. Ill try to write soon. Hopefully, things
will go up from here and Ill be back to my old great self in no time.
Take care and stay well and out of pain. Love, Fran

Does anyone else have this problem?
I find shopping, or doing anything that requires standing for any
prolonged ( 15 min or more) causes stress and pain in my lower back.
I have roving pains, up and down my spine, with the early morning
being the worse, until i have had to stand for any time, then i have
to lay down to ease the discomfort or sit, leaning forward.
Is it just me?
After 16 months of remission, my pa is back with a vengeance.
will be starting Enbrel this month ( I am scared of becoming the
toxic queen again, have been off meds for 16 months). Not sure if
this back pain is PA, or just my deteriorated spine.
Your input is appreciated.
Blessings to all
Sharron

Hi all,
I've had and on going problem with getting in a mode of not being
able to sleep thru the night, that has lasted for 3-4 years. Thank
goodness I have some periods of time where I do sleep.Ambein never
helped me more than 1-2 nights, by the third night it was useless.
Recently there has been two things that help me. One was so simple.
I had a sinus infection and I had to take OTC Benedryl 5 nights in a
row for congestion. I had been in a spell for a month or more,
before this, where I was getting awake at 2 or 3 in the morning and
not going back to sleep.
Taking the Benedryl broke this non- sleeping pattern up. Since then
I've had a night here and there where I had to take the Benedryl,
maybe once every two weeks or so.
The other thing that has helped ,is ,when I'm able to do some low-
impact exercise, I sleep better that night.
Every one is different , so this might not be helpful to you , but
it sure has helped me, so I thought I'd mention it.
take care,
Rosanne

Well I just took my first shot of the new 50mg Enbrel and I agree
with the others that I think you do have to push a little harder to
get it in, at least it seems that way. Looking at the needle under
a magnifying glass the needle is sharp and to a point, unlike that
batch of dull needles I got one time.
I took both the new and the old needles out to the shop and measured
them with digital calipers and the old one is .0135 in diameter and
the new one is .014. I don't think that is enough to make any
difference, so I'm thinking it must be more psychological then
anything else. Still wasn't as bad as the first needles that Enbrel
came out with. :-)
Dick

Rosanne
I had this site Book-marked and when I read your email I tried to go to it and
it came up with THIS PAGE CAN NOT BE DISPLAYED. So I did a 'google' Arthritis
insight and it came up with alot the first one being that website that says THIS
PAGE CAN NOT BE DISPLAYED and the second one is the one Kathy mentioned
arthritisinsight.healthology.com and the list goes on. Elaine

Jan, although I agree with your warning of keeping yeast down and taking
plenty of probiotics, I cannot say I agree with your assessment that seldom do
SDers herx. Of my friend, my sister and myself, only one does not herx. Two
of three positive is not seldom. Sorry to jump in here but I did want to say
that! :
************************************** See what's new at http://www.aol.com

No! That's a mouthful, what is it, what does it do, what is it for, who
recommended it, who has tried it, where did you hear it from? Dolores
Jeannie Marsh <jnmjeannie@...
it?
Jeannie

Hi all,
I use to be able to log on to a message board called Arthritis
insight support group, that was very active. You could post messages
and receive messages similar to this board but with a different
format.
The site also had alot of database that was really nice for
newbies.In the middle of Dec., a week or so before Christmas , it
just disappeared. I can't bring it up , with the regular setting.
Does anyone know if it changed web addresses or not?
If anyone knows the new address, please let me know.
Thanks,
Rosanne
[Editor's Note: Rosanne, I never heard of this site, however, I did a quick
internet search and www.arthritisinsight.healthology.com came up. I typed that
in my browser window and I'm pretty sure that is the site you are searching for.
Kathy F.]

Hi Laurie
Welcome to the group.
My early symptoms were not as pronounced as yours, and I was misdiagnosed.
I finally have a good team and feeling better. Hope your visit goes well.
Please let us know how it goes.
Barb

Hi Everyone,
I have been lurking for the past couple of months and for whatever
reason I decided to intro myself tonight. I have a Doc appt
tomorrow. My first visit to a Rhumy and I have to admit, I'm more
than a bit stressed out....but I don't know why. It's not like me to
react like this. But...I guess if someone is going to tell me that I
have a disease "for life" I should be stressed. I have waited 3
months to get in to see this Doc.
I really don't know where to start...I've had these weird "episodes"
happening to me over the past year. I call them episodes....but
after reading your posts I have come to realize they are flares. I
have read everyone's posts and gotten something from everyone. I'm
grateful for all your info!
To start, I live in upstate NY. In ten days I'l be 50 years old. But
I feel about 90. Last Oct. I woke up one am in TOTAL PAIN! Mostly in
my shoulders (I'll try to keep this short)HA! Called doc...no call
back. That afternoon called doc, insisted that I was having a gall
bladder attack. Had ultrasound done...yup, big gall stone but they
didn't think that was the problem...no inflamation but I now had
pain in stomach. (way too much ibuprophen)By 6pm that night I told
my partner (boyfriend) to take me to ER. I have never been in that
much pain in my life. I sat on the bed and rocked myself and cried.
Now the strange thing....I'm no wimp. I have a very high tolerance
for pain and this knocked me to my knees (or below)!! I was
admitted into hospital and stayed there for 6 days. They had not a
clue. Had CT's, ultrasounds, bloodwork. They saw "dark spots" on my
liver and wanted to do a biopsey. No biggie, right?...WRONG.
OUCH!!!! They had me on morphine, ativan, ect and the pain would
not go away. They came to me and said they were doing more blood
work but thought I could go home. Doc call 3 days later and said "no
cancer" found in liver (no kidding) BUT I had an autoimmune disease.
They couldn't tell me what disease just that the bloodwork had shown
an "ANA ratio 1:320". When back to my PCP who said "Oh they numbers
could have been a lot higher" THEN patted my arm and said "Honey,
you don't have psoriatic arthritis" Yea, actualy patted my arm. She
has no idea how lucky she is to still be standing.
Oh, I don't want to bore you with all the details and I never know
when to shut up. So...what does that ratio say to you guys? I did go
back to my original PCP and she said that she refers people at a
ratio of 1:80. 1:320 sounds pretty high to me, but what do I know.
All I know is I want the pain to go away. It's not as bad as it was
in Oct. but if I lift things or vaccum one day, it seems that the
next day I pay for it.
I have pain in every joint you can think of. I have had sinus
problems all of my life and even had surgury for polups (sp)in
sinus's. I have had Psoriasis for maybe the last 20 years in my
ears, entire back of scalp. Every time I move I hear clicking in any
joint that I have to move. My knees are affected badly. And I have
found that my shoulders are bigger, as if I have grown an extra ball
joint. same thing on my right elbow, right knee and tops of both
feet. A foot doc told me I have 80 year old feet. She asked if she
could use my xrays for her next teaching class. HA!
I'm sorry, like I said, I have a hard time shutting up. I suppose I
should get some sleep. Can't even do that very well these days. but
that's another email.
I would like to thank all of you for sharing so much of yourselves
and your expirences. It has helped me a lot and I understand more
than I did back in Oct.
Hope to get to know everyone and maybe together we can all get
through this "thing" and keep our sanity and sense of humor!
Thanks for listening
Laurie

Thanks, Karen.
Actually, I think the ADD was winning, rather than the
brainfog. This is my third day back on real coffee,
and I'm better able to focus and get things done. ;)
My mother says that all four of her children have ADD.
I've always medicated it with caffeine; my sisters use
Rx.
-- Allison
=====

Monique, did you not have improvement on 200mg of Minocin? Why the Zithro?
-Emma
************************************** See what's new at http://www.aol.com

Hi, Fran!
I've tried Ambien, and it does work VERY well. So
well, in fact, that I only take it when I'm taking
NOTHING else at night, and when Mike is home. (It
makes me a little nervous to be that completely out of
it and home alone...)
Currently, I take a Zanaflex at bedtime. It works well
for me, but is beginning to lose effectiveness.
-- Allison
=====

Thank you! I didn't know that whey was a dairy product. Now I know. Will have
to bone up on nutrition! Thanks, Dolores
Jean Probert <jpro2@...
Whey IS milk protein. It is the liquid that remains after cheese is made.
--
Jean

Whey IS milk protein. It is the liquid that remains after cheese is made.
--
Jean

Well the early symtoms of arthritis are as under
ARTHRITIS SYMPTOMS
Though there are more than 100 different kinds of arthritis, each with
its own set of symptoms, there are some basic arthritis symptoms which
can help you recognize the onset of the disease.
The primary arthritis symptoms are-
Persistent joint pain
Inflammation indicated by joint stiffness, swelling redness or warmth.
Early morning stiffness
Pain or tenderness in a joint which is aggravated by simple
activities such as getting up, sitting down, writing, holding an
object etc
Loss of flexibility or range of motion in a joint
Joint deformity
Other arthritis symptoms can include-
Weight loss
Fatigue
Non specific fever
Crepitus (the cracking noise arthritic joints make upon movement)
Flu like symptoms
Nodules in the skin
Arthritis symptoms should not be taken lightly. If at any point of
time you experience any of the above arthritis symptoms, it is
advisable to visit the doctor. He will be able to make a definitive
diagnosis and guide you.
I hope that helps
Regards
Puneet

When I was underweight and anemic, I made whey shakes daily. The instructions
called for water, not milk. Is there dairy in Whey? I don't have any cans left
to read from as I quit that about a year and a half ago once I cleared up the
anemia with iron tablets and put on some weight. Dolores
Monique Sauve <moniquesauve@...
i've had 2 food allergy tests and both came up with a sensit to dairy
but not to beef. i just thought it was interesting that ethel does no
dairy but takes whey shakes daily.
monique

Hi Sohelia, I just saw Dr. Whitman today. I have never experienced a herx. He
said it is because I have been on an ACE for many years prior to going on
Minocin. I am starting the Marshall Protocol and will be taking Benicar in
place of the Vasotec. They are both ACE inhibitors, therefore he doesn't think
I will have herxes. He cut back my minocin to 100mg once daily while I'm
starting the Benicar at a low dose and will gradully up the dose until I am at
the therapuetic level called for on the Marshall Protocol. I'll actually be
starting the Protocol fully in about two weeks. I'm having a Cardiac CT-scan 64
in the a.m. to see if there are any problems that may interfere with the
Protocol. Dr. Whitman spoke with my Cardiologist today. They are being most
conservative and very careful because of all my prior heart involvement and
aneurysm. I hope someone who has experienced herxes may be able to help you.
If I'm right, you have an appointment with Dr. Whitman soon.
Tell him about your concerns. I've only seen him twice, but think he is a very
good doctor. Only time will tell. Good luck, Dolores. P.S. How do you get to
New Jersey? We have the car, so if you want to coordinate visits, Mike and I
would be happy to give you a ride there and back to NY. Let me know privately.
Dolores
soheila A <soadl80@...
I have SD and been on minocine for almost 6 months.
after 3 months I noticed improvements. It just lasted
2 months. A month ago I had a flu-like symptons and my
hands and feets start swelling and ache. I reduced the
dose og minocine to 100 mg a day on my Doc suggestion.
I don't know if it is herx reaction to antibiotic or
flu
trigered the sd. I have pain in my hands and feets and
if I don't take 800mg iboprofen I wouldn't be able to
walk. I like to know about your experiment with herx
and your sugestion.
Thank you
soheila

In a message dated 1/17/2005 12:07:35 PM Eastern Standard Time,
missionblondie@... writes:
i hope the above helps. i feel very badly for your mother because
fibro is not fun. since taking amitrip my sleep is greatly
improved, as is my fibro pain because of the better quality of sleep
i experience.
Hi Karen,
I also have fibro and have a terrible sleep each night. My rheumy wanted me
to try the amitrip but I was afraid to and tried Zoloft for a few months. I
did nothing. May I should try the amitrip but I was wondering if it caused
any weight gain with you.
Janet

I have the same problem with back and hip pain ~ the remicade works wonders for
the major flare areas, but my lower back, shoulder blade area and my left hip
continues to hurt... Not sure if it's something different there or what; have
to go in for an x-ray on my hip now as they're concerned there may be more
damage going on there then I thought...
That said, most days I feel pretty okay ~ a whole lot better than before!!
Karen (Idaho)

Hello GROUP
I have SD and been on minocine for almost 6 months.
after 3 months I noticed improvements. It just lasted
2 months. A month ago I had a flu-like symptons and my
hands and feets start swelling and ache. I reduced the
dose og minocine to 100 mg a day on my Doc suggestion.
I don't it is herx reaction to antibiotic or flu
trigered the sd. I have pain in my hands and feets and
if I don't take 800mg iboprofen I wouldn't be able to
walk. i LIKE TO KNOW ABOUT YOUR EXPERIMENT WITH HERX
REACTION AND YOUR SUGGESTION.
Thankd you
soheila

wow martha. that is wonderful news. i am so glad to hear you are ok.
monique

Denise, two good brands are Seagate and East Park.
www.seagateproducts.com
www.eastpark.com
Ethel

hi everyone,
i noticed a very strange thing saturday night (and it hasn't gone
away...).
mid-last week my left middle finger, middle joint, had that puffy,
tingly, itchy feeling like it was going to flare. it would last for
about an hour, then recede, then be gone, then hours later, or the
next day it happened again... it happened i guess 4 times. as i
did not notice any evident swelling i thought it was probably
tendinitis (i have fibro as well as pa) as the joint was
also 'tight'. my pointer finger of the same hand had the tingly
feeling as well on one occasion. mid-week it stopped and nothing
more happened.
jump to this weekend. saturday night i happened to glance at my
hand and noticed that both finger joints - middle and pointer
finger - were bright red - redder than anything i've ever seen with
joint inflammation - i actually initially thought i had a transfer
of food dye or something (although could't think of what on earth i
had used that could transfer red dye onto my finger joints). on
close observation (and by feel) i could see there were bumps on the
joints - like a corn or a bunion. there is no longer any pain or
stiffness at all - and the skin on the pointer finger is very rough,
like it is chapped. i'm wondering if i am now developing plaque pa
on my pointer finger. that would be a first for me as my ps type is
the less common plantar/palmar pustular psoriasis.
has anyone ever had a hard lump develop like this? i'm wondering if
they could be RA nodules - i have a positive ra factor (not high
though). my rheumy is fixed on my diagnosis being pa only - won't
even consider anything else and considers my positive ra factor to
be false positive... could be, but now wondering about it again
because of these two bumps.
thanks for reading,
karen

In a message dated 1/15/2005 7:36:31 AM Eastern Standard Time,
Pugnfriend@... writes:
Eleanor Roosevelt once said that no one can make you feel inferior without
your consent and far too many arthritics grant consent. So I'd love to see
a
book that empowers and inspires arthritics while simultaneously providing a
wealth of good information.
Kathy F.
Kathy,
Amen! Well said!
You inspire me. I am going to print it and put it on my refrigerator.
Janet

dear allison,
reading your message i didn't know whether to laugh or cry! (ended
up laughing, so much better for you!).... you described it
perfectly - to a T..... lol - i've had the same experience with the
pot more than once [to my chagrin...] (on one occasion forgot to put
water in the pot for the steamed veggies - bottom of pot melted....
trying to rescue the situation dropped hot metal on floor,
countertops.... it was just oozing) - ruined them! have searched
and searched for things (like a can opener) and found it in the
freezer.... have to write myself notes for everything (if i remember
to do so that is....) sometimes can't even remember what day it is -
last week was in downtown vancouver to see my rheumy - it was my
stomping ground for 25 years when i worked - wanted to go into
underground shopping centre - it's all a maze - and i kept getting
lost - would stand there trying to remember the configuration of the
mall and could not - i used it daily to get from one place to
another for years..... but poof, gone from my poor pea-brain.....
so i certainly relate to every single word of your message.... when
i first experienced this about 10 years back i thought i had
alzheimers (is that spelled correctly??? another thing i can't do
like before!)
enough said - take care allison,
love from another brain-fogged blonde
karen

hi allison,
i too take amitriptyline for sleeping - i have fibro as well as pa
and the reasoning your rheumy gave you is the same advice i received
from mine...
i read with interest what you said about your mom. initially i had
the same reaction to taking amitrip - the thought of taking an anti-
depressant really upset me. what my rheumy told me, and makes sense
to me - is that like mtx in higher doses is used in fighting cancer
(but in lower doses helps inflammatory arthritis), and with
plaquenil, an anti-malarial drug, researchers came to realize it
also helped arthritis, so too did they come to realize amitriptyline
helps for more than one condition. as an anti-depressant, the dose
of amitrip is much higher. i understand about the second reason
your mother is leery of this drug - but i have that same problem as
well (needing to go to the washroom in the night). i have never had
a problem and i have been taking it nightly for over a year. the
urge to go to the washroom does wake me up, and i have never had a
problem getting to and from the washroom safely.
i hope the above helps. i feel very badly for your mother because
fibro is not fun. since taking amitrip my sleep is greatly
improved, as is my fibro pain because of the better quality of sleep
i experience.
good luck to you both,
karen

Martha,
Welcome Back! What wonderful news. El
_____

Anybody hear of this guy? I called him the other day and I'm not sure
what to think of him. He talked about starting me on chelation even
though there is no evidence that I have heavy metals in my body.
I'm interested in the idea of this treatment but I'm hoping somebody
has some experience with this doctor. Thanks!

Hi Monique;
The other day you asked where I had my mineral analysis done.Sorry
that I did not answer but I have been just so busy that I don't know
which end is up.Had 2 orchid society meetings with lectures and had to
prepare plants.Also getting ready for a show in a couple of weeks and
have hundreds to repot.On top of that it is canning time and I keep
running from the stove to the greenhouse.Made lots of Chow
Chow,pickles,chutney etc etc.
Mineral analysis is done by ANAMOL labs www.anamol.com 83
Citation Drive,Concord, Ontario L4K 2Z6 phone 1 888 254 4840 This is a
hair analysis and quite accurate
My test came back as very high Barium and Lead,super high
Calcium,Iron(almost hemachromotosis level)
Magnesium,Potassium,Silicon,Sodium,and Strontium.Tin was 10 times too
high.This shows the minerals being drawn from the bones and must
supplement.Those minerals not originally in the bones had to be lowered
by chelation.Cobalt,nickel,and lithium ,copper were twice too high.
Boron,Chromium,molybdenum phosphorus and zinc were dangerously low,must
supplement.Selenium was moderately low
Food sensitivity done by U.S. Biotek13500 Linden Ave. North,Seattle
Wa. 98133 USA,This is a blood test for 96 foods and yeast test iGg and
IgE.Test came back as super high sensitivity to
beef,dairy,whey,lamb,citrus,and anything from sugar cane.Moderetely high
for legumes and nightshade,foods containing yeast,and red grapes
Hope this helps,Lynne G./SD

kathy
what antib are you on? minocin made me very dizzy so sick i couldn't
function but zithro is fine for me.
monique

Hi Gang! Geoff here.
Just a quick note I thought might be of some help getting a few of you off the
dime and a Web site where you can find some really good tips to help with
depression & sleep problems:
QUOTES WORTH REMEMBERING:
"Pay careful attention to what is happening with dietary supplements in the
legislative arena. . . . If these efforts are successful, there could be created
a class of products to compete with approved drugs. The establishment of a
separate regulatory category for supplements could undercut exclusivity rights
enjoyed by the holders of approved drug applications." -- (FDA Deputy
Commissioner for Policy David Adams, at the Drug Information Association Annual
Meeting, July 12, 1993)
"The task force considered many issues in its deliberations including to ensure
that the existence of dietary supplements on the market does not act as a
disincentive for drug development." -- (FDA Dietary Task Force Report,
released June 15, 1993)
http://www.doctoryourself.com/depression.html
Heb 11:1,6

Hi Seth, Can you get up to Berkeley, NJ? I see Dr. H.H. Whitman there. I come
in from New York. I have S/D R/A & MCTD. Don't know much about Psoriatic
arthritis, but it sounds like it would fall under the category of autoimmune
diseases and could possibly be helped by antibiotic therapies. After 18 months
of A/P I went into remission. I am also writing a book compiling peoples
stories. The purpose is awareness and if there is profit, it will go to funding.
Women far outnumber men. I would like to hear your story. If it fits in, I would
like to include it. That also goes to other men who want to share their story.
Thank you, Please reply to: martysfolks@.... Dolores
sjf127 <sjf127@...
Psoriatic arthritis. I'm only 31
years old and the thought of going on the TNF Blockers for the rest of
my life is a pretty scary. I'm interested in finding a new
rheumatologist that will try the antibiotic treatment. I live north
of Philadelphia in the Willow Grove area. Can anyone recommend
someone I can go see? Thanks,
Seth

My email address should have read roseagain@...
Rosemary.

Thanks for writing Rosemary. I have read the web site about this and thought
it sounded an interesting treatment, although I don't have Lyme disease
myself. Are you taking the salt and vit c in the doses they recommend on the
web site? Has your blood pressure gone up, or have you experienced any other
negative side effects? Have your blood tests improved along with your
energy?
Thanks for taking the trouble to tell us your experiences!
Ruth Heasman

Hi Gang,
I was in this group a few years ago and I check in from time to
time. I did 2 years of AP with not much improvement. Then I found
out I have Lyme Disease, which requires more aggressive abx treatment
as early as possible. (Which I did not get) I have been sick 28
years, misdiagnosed 22 years as Chronic Fatigue Syndrome/ME. I
developed severe dryness in my eyes, nose, mouth and lungs the last 4
years. It became so severe in 2005 that I was mostly housebound the
whole year. I could not cope with the smallest amount of car fumes,
perfume, etc. I had to sleep sitting up as I felt as though my lungs
were closing down. I had to have a humidifier in the room and also
an air filter. I lived on Ventolin to help me breathe. I tested
negative for Sjogrens so far, but have all the symptoms. I honestly
felt like I was dying and hoped it would be soon. My doc had run out
of ideas.
I came across a new, experimental treatment at www.Lymephotos.com
This involves taking large doses of pure salt (not table salt) and
vitamin C. These 2 substances both cross the blood/brain barrier and
actually kill Lyme bacter via osmotic shock. It really works.
I was scared to try it as I thought the salt would make me even
drier. (table salt does) However, my doctor told me that salt
actually causes water to be attracted into the cells and that the
salt & C should help me. With no other options, I tried salt & C and
noticed improvements straight away. I have been on salt & C 34
months and have many fantastic improvements. I have just returned
from a 3 month tour of Canada! (I live in Australia) Prior to salt
& C, my biggest ambition in life was just to cope & to remain
vertical for most of the day! I never thought I would travel. I had
been in a wheelchair and on a walking frame. Since I have been on
salt & C there has been slow but steady improvement in all areas. I
had lots of neurological problems which, my doctor agrees, are
reversing. I am still dry in my mouth, eyes, nose and lungs, but it
is much better. I don't know how well I can get at this stage, but
salt & C is taking me forward when nothing else worked.
For those of you with Sjogren's Syndrome, this is definately worth
trying.
Just my 2 cents worth,
Rosemary Trudeau.

You are describing well known phenomenon when we continually hear the
same song over and over.
In some languages it called an "ear worm". Its simply a brain activity
like dreaming. You are in good company.
Of course if your song is about money there are other aspects implied !!!!!
Good Luck,
Robert

http://stockexchangetrading.blogspot.com/2007/09/trading-and-lure-of-easy-money.\
html
<http://stockexchangetrading.blogspot.com/2007/09/trading-and-lure-of-easy-money\
.html

HI Rosalind, thank you for posting..it is not me with SS, I think her name is
Vicki...I hope she sees this post...
Thanks for posting...Debbie

Do you ever find yourself all of a sudden singing or
humming in your head some song for no apparent reason?
It gets stuck and keeps going round and round in an
endless loop. Please say this happens to you too so I
don't feel so crazy. :-). Anyway, out of the blue I
had this line pop into my head. "The lure of easy
money is so hard to refuse". It is from a song called
"Smugglers Blues" by Glen Fry. As some of you know, he
was from the 70's super group, "The Eagles". What's
this got to do with trading? Trust me I am getting
there!
http://stockexchangetrading.blogspot.com/2007/09/trading-and-lure-of-easy-money.\
html

Wow, I had no idea. thank all of you for the comments.
Jan
Vicki <genuinelysweet2002@...
Just looking at his web site turned me off so much. He remindes me of
Dr. Whitaker in California. Both of them sell so many nutritional supplements
and you can;t ever even get close to reaching either doctor. Dr. Mercola I
couldn't even find a phone # for him. They both have customer service reps
instead, ready for your credit card # to buy overpriced stuff that doens't work.
Monique Sauve <moniquesauve@...
i found mercola didn't help at all. i went in late 03 and he made me pay
for a bunch of expensive nutrit and EFT consults and they did nothing.
he refused to put me on ap. says he can cure RA without it. don't think
so. a friend of mine had the same problem.
monique

Hi Sandy,
The yoga DVD I purchased last year works well for me. It can be done "right
where you are", which means from a chair and not on the floor if you choose.
It's called "Sitting Fit Anytime" by Susan Winter Ward, teacher & author.l
I know there are other very good ones out there also.
hope this helps
Judy
************************************** See what's new at http://www.aol.com

try this
http://www.hopkins-arthritis.org/mngmnt/yoga.html

Has anyone tried yoga? if so, can you recommend a DVD?
Sandy
Beaumont, CA
MCTD, etc.

This is so depressing, my worst fears have come true. Dr. Whitman said that he
has not been able to put any Sjogrens case into remission with antibiotics. He
said I can try them, but didnt give me much hope. He also mentioned Plaquenil
which I could not tolerate as well as Evoxac which didn't help me make saliva,
but it did make me sweat like crazy in the one place I can still sweat, did give
me headaches and all sorts of side effects that didn't go away with time. He
said "There is no data on Brown's antibiotics and Sjogrens that I am aware of
that says that it can cure." Not sure where I am to get hope from. I know I
cannot live this way. To me this is a death sentence and I don't know what to
do.

Kathy,
A cold is an infection, and should be watched closely
when on Humira. I got sick a lot more often on it, and
then started developing lymphoma, which can develop
into cancer of the lympnodes.
I found a tea brew of ginger root (1 tblspoon ground
up and stepped) assisted the resistance of colds and
sore throats. Good luck.

Carolyn Brownlee
281-451-5673

Just looking at his web site turned me off so much. He remindes me of Dr.
Whitaker in California. Both of them sell so many nutritional supplements and
you can;t ever even get close to reaching either doctor. Dr. Mercola I couldn't
even find a phone # for him. They both have customer service reps instead, ready
for your credit card # to buy overpriced stuff that doens't work.
Monique Sauve <moniquesauve@...
i found mercola didn't help at all. i went in late 03 and he made me
pay
for a bunch of expensive nutrit and EFT consults and they did nothing.
he refused to put me on ap. says he can cure RA without it. don't think
so. a friend of mine had the same problem.
monique

Mercola's problem is that he thinks everyone should have the money and
persistence he has to use the supplements for months on months. And I would
like to find out if these people that do his therapy have further
deformaties and complications down the road like people on prescription meds
do. I don't think he knows and/or maybe they would not even tell him.they
would just not go back.
Cooky
i found mercola didn't help at all. i went in late 03 and he made me pay
for a bunch of expensive nutrit and EFT consults and they did nothing.
he refused to put me on ap. says he can cure RA without it. don't think
so. a friend of mine had the same problem.

My answers are in your note. I put ME at the beginning of my part.
Cooky sorry I feel so overwhelmed I missed your post. Of course I am not
offended, you are trying to help me. Njteabag, Debbie, Monique, Lynne, and
you are keeping me on this board, I was about to leave yesterday to
ME...Did you ever think that the SS people who are cured or at least are in
better shape are not posting anymore due to them being more active? I know a
lot of Ra people are that way. The only reason I am still on is that this is
the only chat site I belong to and everyone here talks about other things so
I feel like I have a bunch of friends. I also have info for people like you.
I mainly post privately as I seem to occur rath of people when I post (they
can't read my smiles) or people feel I am wrong even tho I have been a nurse
for 39 years and studying alternative for the last 10. I am not saying I am
perfect as a nurse or licensed to give homeopath advice but I try. So most
times I post privately. Or I would be off and no one would know how much
better I am.
I appreciate your take on Dr F very much. Maybe I should just cancel and see
Dr. Whitman or Dr Sinnott instead, despite them being much farther. I am so
confused. Sinnots phone # His phone is (712) 364-3302 and I call at 2:00 pm
EST. I live in the DC Metropolitan area. He is wonderful. But, call him
right at 2:00pm. I waited until 2:15pm one day and I couldn't reach him
because the phone was busy until 2:30pm. And the lady at the front desk
will NOT interrupt his patient time after 2:30pm.
ME....Cooker-Van was the research director of the late doc Brown's Arthritis
institute. Here is some info on how to send your blood.
THE ARTHRITIS RESEARCH INSTITUTE
504 E. Diamond Avenue, Gaithersburg, MD 20877.
Telephone: (301) 216-1231
M. R. Coker-Vann, Ph.D., Director.
PROCEDURE FOR SENDING SPECIMENS TO THE LABORATORY
Send approximately 5 ml. of sera in a sterile tube or vial.
Seal the top of the tube with tape or parafilm to avoid spills.
Place in a biohazard sealable bag before putting it in a shipping container.
Ship via UPS or Federal Express only, to the above address. Overnight
delivery or UPS 2nd day air is preferred.
If blood is drawn on Friday, please refrigerate serum and mail on Monday.
Please mark package "Refrigerate upon Arrival".
Cost of the test is $110-00 US. Your cheque must accompany shipment.
Dr. Coker-Vann advises that patients or physicians overseas wanting to