Rheumatic

hi
i know two ppl who have gone into remission with zithromax 500 mg 2x
weekly. i went into remission on mino several years ago but had to stop
it due to side effects. now am trying the zithro. 2 weeks in and having
a bad herx but that's about it so far. franco often rxes zithro to ppl
with sensitivity to mino.
monique

Thanks Carol. I appreciate your e-mail and thoughts. I am very dismayed that it
takes another antibiotic to take care of these spores. But based on the info
from john on this site and everyone's help, I am hoping that this is cleared up
very quickly.
Thanks again!
Roni

"aknjts" <aknjts@... wrote:

Yes, Roni, we read your posts! Dolores
"rbarna dejazzd.com" <rbarna@...
I seem to be having a problem getting my e-mails through to the group. This is
just checking to see if it makes it to the group.
Thanks
Roni

Hi John:
Thanks for your detailed information on how to deal with this CDiff infection.
You are right it is definitely miserable. I was doing fine until I started
taking the oral Clindy....no more of that for sure.
I have started the oil of oregano and my doctor has me on Florastor, which seems
to be helping with the inflamation. I plan on including the suggestions you
sent. Thanks for the time you took to help me with that.
I have yet one more question.....it seems logical to me that to do a colon
cleanse would be beneficial since it would wipe out those spores and infection.
I found a product on the internet called OxyPowder that is supposed to be good
and do the job. Any suggestions or experience on doing a colon cleanse while
trying to rid the CDiff spores?
Thanks! Have a great day, hope you are doing well.
Roni

Please keep us posted Cooky. I too have researched it, but haven't found
any Dr.'s who are familiar with it. I'm a little bit leery of it b/c it is
an immune stimulant & depending on what theory you buy about autoimmune
disease, that might not be a good thing. I have read testimonials from
people with MS that use it w/good results. So, please keep us updated on
what you decide and your reaction to it,
Patrice
_____

Please remove me from the list for this group..I am lookin for a group
that covers jra more than adult ra..thanks..Wishes the best for everyone

I was on gold shots before and they can cause kidney problems. I didn't have
infection from them though, but my hair started falling out. When I went to the
AP doctor he took me off gold shots immediately and I was fine 5-6 months later.
Yeast infection can be treated locally at first, and o prevent it take
acidophilis with the antibiotics.
Gold shots can be very toxic, and to tell you the truth, I don't believe they
did much for my RA
jlbwadeb <jlbwadeb@...
I was diagnosed with RA in 2005, The Rhuemy doctor started me on
Methotrexate shots, I was started at 5 and finally moved up to 20
after that I was so sick from the meds I could not even drink water
and hold it down. So he took me off the Methotrexate and started me
on the Gold shots. I take 5mg prednisone, 20 mg Arava, and the Gold
shot now. This with the Gold has been about 3 months now and ever
since starting it I have have a kidney infection, and 5 urinary
infections. I have never in my life had either one of these before.
Is it possible that the Gold shots is doing this. I asked the head
nurse and she said I needed to drink more water. I told her that is
all I drink and cranberry juice, I drink a gallon or more of distilled
water everday and cranberry juice, what else can I do. Then every
time I am given the antibiotics for the infection, it gives me a yeast
infection. there is a no win in this situation is it???? Thanks for
any help someone can tell me about this...Joyce

I cannot find whomever said that Dr Franco wants his patients off any
antibiotics for a month before he sees them. Who said this and where did you
find out? I ask because his nurse doenst seem to think it is necessary but I
want to be on the safe side too...meaning I dont want to take them and have my
labs be off for bacteria. I stopped just in case because my appt is in begging
of Oct. Any help appreciated thank you!

Hi, Ronnie:
"...C.Diff can be caused by stress..." NO. However, there is a bit of
complications that can be due to stress but C. diff lives in our gut and
antibiotics CAN cause overgrowth and this is MISERABLE.
If you have the colitis due to Clostridium, you should not eat anything raw
and should stay full away from any refined starches (anything made from or
augmented with flour of any variety), caramel, potatoes, and all fried foods.
It can take at least a month to eliminate this overgrowth, and up to three
months to repair the damage.
You should find a source of enteric-coated oregano OIL, and take flaxseed, EV
olive oil, salmon oil, and especially GLAs upon retiring: Evening primrose,
borage seed, or black currant oils. Take chelated calcium, zinc, and magnesium
(citrate--about 2 tbs twice daily of the average liquid).
Brown Cow or Stonyfield Farms yoghurt will help heal the tract and provide the
right flora, along with your probiotics. Avoid anything physically hard (or
raw) for at least a week.
Sauerkraut and the juice should be taken and can be eaten as a meal with
turkey franks or whatever you like normally that is not too fat--avoid most
animal fats especially from beef or pork; others are not so bad, provided you
are taking balancing EFAs at 11g or more.
Three days of apples only--the Edgar Cayce Apple Diet--can help very much, as
apple season approaches and they are fresh and local.
After the infection is under control, it is good to supplement for
repair--vitC, vitE, niacin plus niacinamide, and lysine. Eat okra, lychee
fruit, and some aloe vera at 20% pure juice can help. Unsweetened concord grape
juice and glycine can also help. Eat coddled eggs if you like these, otherwise
lightly fried in butter--but eat eggs in quantity after the Clostridium stops
causing severe reactions (about 3 days after the Flagyl...you may not be able to
tell the difference between the Flagyl and Clostridium at first...).
Once you have had this, you are prone to it and should take occasional courses
of Flagyl every time you take antibiotics.
Hope that this helps,
John
"rbarna dejazzd.com" <rbarna@...
HI Everyone:
I was doing quite well on the AP for about 7 years, took pro-biotics, etc.
Within the past few months I had been having some bowel and gastro problems,
after a stool test my doctor tells me that I have C.Diff.
I am convinced that it came from the oral Clidy my doctor prescribed a few
months ago to help me during my flair up. I am also wondering if C.Diff can be
caused by stress (during the emotional stress of continually taking care of a
terminally ill mom). I took probiotics during but obviously not enough.
Now the doc. has me on flagyll to conteract the C.Diff.
Does anyone have any experience with this C.Diff that can give me som tips,
advice? Is this something that will "go away" and not come back?
Thanks,
Roni

Hi Julie:
We are looking into the magnet system. I guess I just don't see how the magnets
outside the pipe can help the water inside the pipe. Did you have your water
tested after you had the magnets applied to determine if it was effective for
softening the water? Do the magnets also purify the water?
thanks
roni

Hi Joi, I have hyperpigmentation from being on Minocin for almost 21 months and
my fault for not covering up better while in the caribbean. My new rhemy
suggested I substitute one doxy for one dose of Minocin daily. /but I am going
on the Marshall very soon, so a lot of things will change for me. We shall see.
Dolores
Joi <joifaithhope@...
that I sent a few months back. I have RA and also have a friend who has RA. We
both go to the same rheumy. My friend is suffering from significant
hyperpigmentation from the minocin, whereas my hyperpigmentation is mild. I
think she should switch to Doryx. I didn't respond to generic doxy, so I learned
to deal with my mild hyperpigmentation. The rheumy wrote her a perscription for
generic doxy and told me that he didn't agree with the chat room discussions on
doryx (I went to the doctor with my friend). I know from past experiences that
you sometimes have to ignore a doctor and fight for what you feel is best for
you.
Is there an online pharmacy that we can send the doxycycline perscription to and
request doryx as the brand?
Thanks!

hi harold
thanks. maybe i devleoped an allergy to mino after 3 years/ i am on
zithro now and don't get dizzy but man am i herxing. hope it means this
is going to work.
Monique, Mike, Dolores,
Dizziness can also be an allergic reaction to Minocin. See for example
http://dearpharmacist.com/plugins/forum/forum_viewtopic.php?249
<http://dearpharmacist.com/plugins/forum/forum_viewtopic.php?249
www.google.com searches on
+"drug allergy" +dizzy
or on
+"drug allergy" +dizziness
brings up a large number of pages, many related to antibiotics. Drug
allergies can develop over time. They can be life threatening and
should always be taken seriously.
Sincerely, Haral

its so confusing. I know Dolores was helped by Mino for her dizziness which was
episodic and I assume like vertigo? Yet mino can cause dizziness itself. I take
doxy. I have been having problems with non spinning type dizziness, like a
constant non episodic motion sickness. I wonder if AP can help me with this but
I guess only if it is bacteria caused which of course no doc will tell you as
they dont know. They will diagnose you with so many other things first, in my
case 5 different diagnosis with really serious side effects to their meds. So
while I am encouraged that Dolores migrains went away, I too was diagnosed with
migrain, the kind that causes dizziness, mine is just so different from most
peoples which is more like Dolores symptoms. They rx beta blockers and epilepsy
and seizure meds for this. Translation: possible hair loss, weigth gain, reduced
blood pressure and heart rate (mine already low) and much more serious side
effects. I tend to focus more on the ones
that affect appearance but there are many worse ones. So naturally I am hoping
AP helps with both the Sjogrens dryness (so many meds cause dryness) as well as
the constant motion sickness, for so many reasons as you can see.
Monique Sauve <moniquesauve@...
can you tell me more re the dizziness you got on minocin? how long did
it last? i take it it went away. i was in remission from RA on mino 200
mg a day and then after 3 years got so sick i had to stop the mino. i
was so dizzy i wanted to vomit and couldn't see straight. i couldn't do
anything. now RA is back and am trying zithro. am herxing pretty bad
right now which i never did on mino.
thanks
monique

Vicky,
Sorry, I am not qualified to help you. Dizziness is a huge
topic. Doing a www.google.com search on dizziness brings up
8,490,000 pages. To refine the search results, do search on
combinations of terms, such as
+dizziness +scleroderma
+dizziness +"drug allergy"
+dizziness +"double vision"
The following is an informative web page:
http://www.pneuro.com/publications/dizzy/
Sincerely, Harald

<<mailto:moniquesauve%40shaw.ca

Hi!! I have been on AP for seven years now and Minocin has kept me pretty
well pain free. I have flairs when stress gets really bad and just go back
on the daily doses. In a few months.....WALLAH!!!....pain free and symptom
free again. I know some people have said they found it hard to get in
remission again, That simply has not been the case for me. I have had three
major
flairs since i started and each time I managed to get myself back into
remission. I think the first time I let it get too far ahead of me (ignoring
the
pains), and it did take about four months of daily minocin to get back to
normal. Now at the very first sign of aches and pains I up the Minocin and the
RA goes away fairly quickly. Stress seems to be my main trigger. And you
combine stress with fatigue and it seems to be a roadmap for a flair. When not
on daily doses I still do the 100 mg Mon-Wed-Fri. Sure works for me!!!
Martha
************************************** Get a sneak peek of the all-new AOL at
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Harold what do you think is the cause of my dizziness that I talked about in my
earlier post? Mine is very different from Dolores's. Thanks!
"Harald Weiss, Technical Marketing Group" <hweiss@...
Monique, Mike, Dolores,
Dizziness can also be an allergic reaction to Minocin. See for example
http://dearpharmacist.com/plugins/forum/forum_viewtopic.php?249
www.google.com searches on
+"drug allergy" +dizzy
or on
+"drug allergy" +dizziness
brings up a large number of pages, many related to antibiotics. Drug
allergies can develop over time. They can be life threatening and
should always be taken seriously.
Sincerely, Harald
At 11:26 AM 8/20/2007, Mike wrote:
Hi, Sorry if you thought that my dizziness was caused by Minocin. My
dizziness started prior to taking Minocin. In my case because I have
systemic scleroderma, I have sclerosis throughtout all my major
organs including the brain. It's not documented as the cause, but I
also have spaces in my spinal chord. It's called syringomyelia. My
dizziness came on and left pretty quickly. But I also get imbalanced
when walking and tend to veer. This started years ago when I first
came down with what I suspected was "Chronic Fatigue Syndrome". After
the minocin, I got double vision for a short time and that was also a
transient symptom that seems to have disappeared as well. Now, I
seldom get dizzy, but that could also be a symptom of my diabetes. I
have a complicated history and don't really know when my disease
started. I know only one thing and that is that with Minocin all
symptoms have slowly faded away and I feel so much better. I'm
actually wel l almost all of my
days.Sorry I can't be of more help to you. We all react differently
to medication. I hope you get well quickly. Dolores

Hi, Sorry if you thought that my dizziness was caused by Minocin. My dizziness
started prior to taking Minocin. In my case because I have systemic
scleroderma, I have sclerosis throughtout all my major organs including the
brain. It's not documented as the cause, but I also have spaces in my spinal
chord. It's called syringomyelia. My dizziness came on and left pretty
quickly. But I also get imbalanced when walking and tend to veer. This
started years ago when I first came down with what I suspected was "Chronic
Fatigue Syndrome". After the minocin, I got double vision for a short time and
that was also a transient symptom that seems to have disappeared as well. Now,
I seldom get dizzy, but that could also be a symptom of my diabetes. I have a
complicated history and don't really know when my disease started. I know only
one thing and that is that with Minocin all symptoms have slowly faded away and
I feel so much better. I'm actually well almost all of my
days.Sorry I can't be of more help to you. We all react differently to
medication. I hope you get well quickly. Dolores
Monique Sauve <moniquesauve@...
can you tell me more re the dizziness you got on minocin? how long did
it last? i take it it went away. i was in remission from RA on mino 200
mg a day and then after 3 years got so sick i had to stop the mino. i
was so dizzy i wanted to vomit and couldn't see straight. i couldn't do
anything. now RA is back and am trying zithro. am herxing pretty bad
right now which i never did on mino.
thanks
monique

Hi Christine, and welcome to the group.
It sounds like you are very sensitive to NSAIDS, and should simply refuse
any NSAID prescription, based upon your history.
I became very sensitive to NSAIDS early on (while taking Feldene, which is
the brand name of piroxicam), and have found I cannot take any NSAID but
Mobic or Celebrex. My mom is also sensitive to NSAIDS, and can not take
Mobic, either. She is in her 70s, so her doctor wouldn't consider Celebrex
for her 9I am in my forties)
If I were you, I would refuse any attempt by any doctor ever to prescribe
piroxicam for you. Those doctors are being foolish, based upon your history.
I think you need minocycline, and the dose you quote sounds good. I don't
think you want to mess around with tetracycline, minocycline is more
effective. Tetracycline is just wasting valuable time.
Minocin can cause some side effects, especially as you start it, so if you
have dizziness or nausea, you can reduce the dose for a while, and gradually
build up. Some of us had good luck with a higher dose, but I wouldn't start
higher. You can try a higher dose a little later if it seems appropriate.
--
Jean

Thanks Dolores for responding so quickly. I have been on the AP for almost 6
years and was doing great. My last anticentmere numbers were 187. Still had
inflamation and swelling hands, etc. Then started dealing with my terminaly ill
mom and the flair started. Thought I had gotten it under control and back on the
mend.
Then a few weeks ago I started passing blood in my stool and had a lot of pain
in my colon area. My doc thinks I may have colitis from the antibiotics. I'm
waiting for the culture and stool test to come back on Friday.
My doc and I have been learning this AP therapy together. He is willing to try
anything to keep me getting better. I have an appointment with Dr. Whitman on
Sept. 10 and hope that he can add some additional experience and knowledge to my
regime. The last thing I want to do is have a major set back.
Thanks for your help and response. Appreciate it!
Roni
-----

I meant to send that last message to Dolores specifically not the whole group
because I may have already asked the group this, but since I sent it to all
then anyone who can answer that would be great. Thanks.

FISH OIL. i am so tired of meds which seem to make me
feel better, but not feel well. thank you again sue

I've tried to ban these people, but unfortunately they join the group,
often with a legitimate-looking address, send their message and then
unsubscribe. The other alternative is that anyone wanting to join the
group has to be monitored but that means work and how do we tell who is
legitimate and who isn't. Yes, it's annoying but just hit delete.
Chris.

Hi Lynne, Thanks for explaining it. So, how can we be sure when we buy fruit
that we are getting the unsprayed ones? There aren't too many farms in New York
City and traveling to farms would be cost prohibitive. Dodo
lynneandsantos <lynneandsantos@...
a simple thing, cherries have a lot of a
chemical that reduces inflamation but any fruit with high colour will
work the same way. Fresh or frozen makes no difference.The trick is to
find cherries that have not been sprayed to death.5 years ago I live in
Niagara just across the road form a fruit farm.Every time it was wet or
even just terribly humid they would spray the cherries,apricots,grapes
and peaches with fungicide.This stuff penetrates up to 1/4 inch deep so
that cherriea and apricots are the worst offenders when it comes to
finding pesticide free fruit. Lynne G./SD

Group,
I posted Mercola's video about medical realities before I'd finished watching it
in its entirety thinking it would have some value. I had not realized it was
essentially an advertisement. Please accept my apologies for the clutter.
Geoff

HI Group, I have received several of these in the past week or so....not from
anyone sick, just silly stuff and some porn websites...I just ignore...

Hi, Thank you for the invite. If you have one of the Rheumatic diseases, I
would be happy to discuss anything pertaining to that. What we don't have in
common is riding. I'm 71 yrs old and have only been on a motorcycle once in my
life for a few minutes when I was very young. It was not a pleasant experience
because I burnt my leg so badly and was in a lot of pain for quite some time. I
never have or ever will get on one again. Do you have a rheumatic disorder, if
so contact me? Thank you~~~~~Dolores P. Rosner
girljzrider <girljzrider@...
thought I would drop you a line and hope to become your friend! Check my
personal page here:
http://girljzrider.googlepages.com/girlrider.htm

I read your profile today, I thought I would drop you a line and hope to become
your friend! Check my personal page here:
http://girljzrider.googlepages.com/girlrider.htm

My daughter was having trouble with her feet and someone told her to eat 12
cherries. It didn't matter if they were fresh or frozen. It most certainly did
the trick!!
Thanks for the alert.
jan

Hi JaeHo, What your wife is experiencing is the scleroderma that has attacked
her small veins in her fingers and feet and they are closing up. Getting the
clidamycin immediately will reduce the possibility of her getting her fingers
and feet infected. Minocyline is a long term committment and must be taken for
at least one or more years before noticing any change. But it is worth getting
on it as soon as possible. Your wife sounds like she is having a bad flare. Do
you have a doctor who knows about the "Infectious Theory" and the "Antibiotic
Protocol?" If not, find one fast. Go to www.roadback.com and post the same
e-mail there and ask for Richie. He has a list of docs Tell him what area you
live in. Give him your e-mail address and he will answer you privately. He is
not allow to give doctors names on the site. Also, get on the phone with your
nearest hospital and ask for the names of as many rheumatologists as you can.
Call them all up and tell them about your
wife's dilemma. Tell them that you want to start on antibiotics immediately.
Clindamycin is a good start. Good luck! Dolores
JaeHo Yoon <beowulfkorea@...
My Jesus of Christ will bless you !
There begins new symptom from one week ago.
From one week ago, my wife's right hand's middle finger begin to be
darker and darker.
I will upload my wife's finger picture in Photos.
Her middle finger is like sausage, red hot and dark, which I assumed
was part of the Raynauds.
For one week, she can't sleep because of pains of middle finger of
right hand.
Yesterday, she went to the local hospital and get the anti-pain
medication to relieve middle finger pains, however it does not
work.
Yesterday, I found another finger, which is the middle finger in the
left hand, begin to be darker.
So, today she will have one IV 900mg Clindamycine.
Which medication is better for her treatments ?
Minocycline is better ?
Other medication for her finger ?
Another symptom is that her legs are a little bit powerless.
Sometimes, when she walks, she fall down because of powerless legs.
Her legs are not swollen.
Thank you very much
Jae-Ho Yoon
Seoul, Korea
17th August 2007

http://www.tldp.com/issue/157-8/157rootc.htm
this it the website for info

Hi Daniel. My husband has been taking plaquenil for years for osteoarthritis
and he has been fine, except he has to get his eyes checked every six months.
Take care.

Hi, salt (sodium chloride) and Potasium chloride )(used as salt substitutes)
both could be bad for you. We have a tradional water softner coming in from the
well, then we have an RO unit at the sink and also one in the basement with a
storage tank. The RO unit (reverse osmosis) produces clear clean water and
removes all chemicals. it may be worth just getting and RO unit installed
somewhere in your house. (we have the big one in the basement for use with my
fiances tropical fish) Kathy

Hi Roni,
We have a water softener that uses potassium instead of salt. I don't think
it's a special system and the potassium bag says that it can be used in all
salt systems.
Dee
_____

hello group, this is my first posting. i have RA and
SLE. i have read comments about cod liver oil. i am
ready to try something new to help with pain. can
anyone tell me what dosage of cod liver oil is used
and how often, and the name brand of the lemon tasting
cod liver oil. i will call my dr. before using to make
sure it wont interfere with my hundreds of other
prescribed meds. thanks in advance. sue

El, I do not put the names of Docs on list. Email me privately for such
information. Carol F.
Hi Carol F.,
Do you have the name(s) of Lyme literate Doctors in the Washington DC Metro
area? Iâm looking for one in Northern VA specifically but Iâll take the
âareaâ if you have it. I have neighbors in Fairfax with Lymes, friends in
Richmond, VA, and some in Silver Spring, MD. I can put the info to good
use. Many thanks, El
************************************** Get a sneak peek of the all-new AOL at
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Hi all
Until I can get myself to an experienced AP doc in Sydney (thanks for
posts) was looking for others' experience to perhaps help me. I have
been on minocycline for 4 years now. No active symptoms these days (I
have pailindromic RA) but my RF has stalled at mid 300's (it went down
from 692 in first 6 months). I have upped my dose to MWF 200mg - 100mg
x 2 daily - from 100mg MWF) to see if that will do anything. Did have
one online doc's suggestions of adding flagyl 250mg x 2 per week.
Would appreciate hearing from others whose RF stalled and how you
addressed that Many thanks. Lynnie

Yes Armour thyroid is only by prescription.
************************************** Get a sneak peek of the all-new AOL at
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Great, we will watch for the outcome. Hope they find a way to help the little
guy. You are in my prayers. Dolores & Mike Rosner
peggy marshall <friendly45036@...
My youngest has a appt Sept 4th. with the rheumatologist..They said to plan on
being there for several hours...The pdoc also noticed the difference in leg
length..His leg has been swelling quite a bit at the joint and complainin of
pain..Makes me sad to see my lil guy in pain..But I thought I would let everyone
know he is gonna see a specialist..Will keep everyone posted..Been doing
research on jra..Dang its depressing right along with other things..Hugs to all
in the group
Peggy Z

I heard this being discussed on the news and it said Bush did receive a round of
anti-biotic treatment. I think it was Dr. Sanja Gutta being interviewed about
it, but not sure that's the news I heard it on.
As far as the tiredness Bush definitely does look tired and old.
Jeannie
DEBBIE GIBSON <Debbullwinkle@...
Bush Apparently Had Lyme Disease - washingtonpost.com
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Bush Apparently Had Lyme Disease
President Was Treated for Rash in 2006
By David Brown
Washington Post Staff Writer
Thursday, August 9, 2007; Page A02
President Bush was treated a year ago for what appears to have been Lyme
disease, the White House said yesterday in disclosing the results of his annual
physical exam.
A report of the president's recent medical examination said his case had
"complete resolution" and was "without recurrence" since being treated last
August. The illness, an infection carried by deer ticks that is prevalent in the
Northeastern United States, had not been previously revealed.
From FindLaw
a.. President Bush's Medical History
Your Body
What's With the Itch?
The mosquito "bites" and you scratch. Here's why.
Bone Matters
Your bones are constantly changing, which could put you at risk for
osteoporosis.
Lyme Disease
Symptoms, treatment and prevention. Plus, the life cycle of the
disease-spreading tick.
On Your Feet
High heels' effects on the body. Plus, the pros and cons of different shoes.
a.. How's Your Posture?
b.. Stress
c.. Sneezes and Coughs
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Hi Everyone
My youngest has a appt Sept 4th. with the rheumatologist..They said to plan
on being there for several hours...The pdoc also noticed the difference in leg
length..His leg has been swelling quite a bit at the joint and complainin of
pain..Makes me sad to see my lil guy in pain..But I thought I would let everyone
know he is gonna see a specialist..Will keep everyone posted..Been doing
research on jra..Dang its depressing right along with other things..Hugs to all
in the group
Peggy Z

Vicki, I have never had peripheral neuropathy.
Ethel

Hi Lynnie, I really feel for you as I was in the same situation.... Went from
doctor to doctor and none of them worked out..... I don't know how any of them
got on the list as they had not a clue about AP... I see Dr Schloeffel... When I
tried to make the initial appointment I got the same answer, he wasn't taking
any new patients..... But I persisted and have been seing him monthly now for a
year.... He is fantastic.... I am in Sydney as well, if you need to talk email
me to my private email.... rosepink@... Perhaps I can help......
Diana

Thank you, Maz. No, I'm sure she hasn't been tested for lyme. I'll pass your
words on to her.
Ellen

Thank you Emma for the info on Armour Thyroid. I will discuss it at our next
visit. Dolores
emluv23@... wrote: Hi Dolores!
So glad your appointment went well with your new Rheumy! Armour thyroid is
natural thyroid taken from pig thyroid. It is a mix of T3 and T4, many natural
docs prefer it over synthetic thyroid meds and believe that the body uses it
better. If your thyroid is low this will definitely help the AP along even more!
My doc told me that the thyroid has over 40 functions in the body, so if it's
not working it's very difficult for the body to heal from an illness. Also, I
was just reading in one of my medical books that many of the enzymes in the
body are optimized to work at 37 degrees Celsius... so with a temp a full
degree or more below that no wonder it's taken me awhile to kick this disease...
just one more piece of the puzzle.
Good luck!
Emma
************************************** Get a sneak peek of the all-new AOL at
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Hi Ethel,
Did you ever have peripheral neuropathy? And if so, did that get better the
way your Sjogren's did? Thanks!
Ethel Snooks <emsnooks@...
Check out the information in Section 13 of the FAQ on
www.rheumatic.org

Hi Dolores!
So glad your appointment went well with your new Rheumy! Armour thyroid is
natural thyroid taken from pig thyroid. It is a mix of T3 and T4, many natural
docs prefer it over synthetic thyroid meds and believe that the body uses it
better. If your thyroid is low this will definitely help the AP along even more!
My doc told me that the thyroid has over 40 functions in the body, so if it's
not working it's very difficult for the body to heal from an illness. Also, I
was just reading in one of my medical books that many of the enzymes in the
body are optimized to work at 37 degrees Celsius... so with a temp a full
degree or more below that no wonder it's taken me awhile to kick this disease...
just one more piece of the puzzle.
Good luck!
Emma
************************************** Get a sneak peek of the all-new AOL at
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Hi Carol F.,
Do you have the name(s) of Lyme literate Doctors in the Washington DC Metro
area? Im looking for one in Northern VA specifically but Ill take the
area if you have it. I have neighbors in Fairfax with Lymes, friends in
Richmond, VA, and some in Silver Spring, MD. I can put the info to good
use. Many thanks, El
_____

Hi all,
Just a reminder about the theory that iodine deficiency is an underlying
cause of hypothyroid conditions. I know the commonly held belief by some in
the medical community is that people get all they need from iodized salt and
that lacking a goiter one cant possibly be deficient in iodine. However,
(as I gleefully argue) not everyone buys or uses iodized salt, many people
have cut back on their salt consumption anyway, and we no longer get iodine
from bread sources. I have read about several doctors who now believe that
iodine deficiency is the root cause of the widespread hypothyroid situation
in our country. Some of them also believe this deficiency predisposes one
to several types of cancers; breast, prostrate, etc. Given the increase in
breast cancer this makes sense to me. There are five books on this subject
but unfortunately I dont remember the names of the authors.
My Mothers doctor (actually PA) would not order the test (24 hour urine
collection) to confirm my Mothers iodine deficiency so I took plain old
iodine from the medicine cabinet (most will find their old bottle has
finally dried up) and painted the underside (soft area) of her arm. The
iodine was totally absorbed in an hour. This told me her body NEEDED it. I
remember as a kid getting a sore on a finger or arm painted and it stayed
for more then a day. So I started her on some of my Iodoral, an iodine
supplement I get from my acupuncturist. We both now take Armour Iodoral.
By the way, the doctors took my Mom off of Armour earlier this year (shed
been on it since 72) and gave her synthroid. Her short term memory, which
had been remarkable given her 91 years, went down the tubes. After a couple
of months of this I put her back on Armour and after a few weeks she began
to feel like her old self. Also the warning label indicates Synthroid
conflicts with Coumadin. That may have been some of my Moms problem.
Re taking a temperature, my doctor said to use an old fashion thermometer if
I had one and to place it under my armpit before arising. Hit the snooze
button and let it stay ten minutes. Record the temps for a couple of weeks
and if the readings are consistently in the 96 or 97 range then more then
likely you have thyroid issues. El
_____

Peggy,
Do you know of anyone good in the NY area to treat dx and children and
adults with lyme disease?
Thanks,
Carol E from NY

Ellen, try duct tape, could not hurt and they have done several studies re the
effectiveness of duct tape on reg common warts.
Debbie

Yes, Debbie. Dr. Hendricks Whitman---absolutely fabulous, thanks
DEBBIE GIBSON <Debbullwinkle@...
Whitman, the new DR?? I was wondering how your appt went!!! I adore him!
Debbie

Hi, my thyroid is low too. What's Armour Thyroid? Had a great visit with my
new Rheumy.
He's getting together with the rest of my doc's to form a plan and modify the
M/P to my specific illnesses which turn out to be MCTD. I'm excited about the
new adventure. I have done so well so far on Minocin, so they expect even better
results with the modified A/P of M/P, The thyroid is a new mix in the bag. So,
please tell me what is Armour Thyroid? Dolores
smoosh215 <smoosh215@...
Thanks Emma. I'm going to do the temp thing. I go to the Dr. on
the 20th so hopefully I can bring that info.
Good luck to you with Medical School!
Michelle

Delores, is this DR Whitman, the new DR?? I was wondering how your appt went!!!
I adore him!
Debbie

Check out the information in Section 13 of the FAQ on www.rheumatic.org

Hi Michelle,
I have dermatomyositis, so I've had many more symptoms than fatigue. Luckily,
almost every symptom is in remission except for the actual weakness, but even
that has gotten better. Before the thyroid therapy I still had a great deal
of fatigue - not feeling rested when I woke up in the morning, difficulty
concentrating, also a "sick" feeling that came and went...now I feel good when I
wake up and feel alert throughout the day and am concentrating enough to do
advanced level science- I'm preparing for medical school. So BIG improvement,
and
I have no side effects at all from the Armour thyroid.
To check your temperature, you are supposed to keep a thermometer by your
bedside table and take your temp upon waking every day during your menstrual
period. I think if it's below 98 consistently it's considered hypothyroid. You
can
google Broda Barnes thyroid test for better instructions.
For celiac I'm doing NAET - _www.naet.com_ (http://www.naet.com) It's
acupuncture targeted at correcting allergies. I'm still going to avoid grains,
but
hopefully this will be a backup in case I encounter any hidden gluten.
Hope this helps!
Good luck,
Emma
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He will be going to the pediatric dr today..They want to look him over before
doing the referral..I will also mention the fact of lyme disease..Because a
while back he has a irritated spot on his head that looked like a bite of some
kind..Thanks..I will also email you later today if I get the chance..My youngest
is the one that the pt thinks has it cause she deals with children on a regular
basis at the hospital...Thanks
Peggy Z
EJFISCH@... wrote:
Peggy, The symptoms you describe can be found in Children with Lyme Disease.
The ADD, developmental delays and RA signs can also be Lyme Disease. If you
email me privately, I can put you in touch with a person in Ohio who could
recommend a physician that is Lyme literate to test the boys. Don't bother with
just any physician as the standard test leave much to be desired. Adjunct
Professor Emeritus of Laboratory Science, Carol Fisch
************************************** Get a sneak peek of the all-new AOL at
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Hi Marianne,
Have you had your thyroid checked? All of my thyroid labs were in the normal
range, but my temperature was only 97.0, so my AP doc put me on Armour
Thyroid. I feel like a new person! It was a revelation. I ran out of it for a
few
weeks last month and thought it was no big deal but then had a major flare until
I got some more. I definitely have a normal person's energy level now. It is
the greatest gift.
Best of luck,
Emma
************************************** Get a sneak peek of the all-new AOL at
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HI Marianne,
From what you are telling us, I think you are doing great. It takes a long
time for some people to get rid of the nodules and energy for me was the
last thing I noticed returning (and when I flare it's the first thing that
goes) It was around 7 years before I felt like I was in remission. I have
mycoplasma hominis and it is very hard to treat.
Are you taking very good acidophilis and taking a high dose for all the
antibiotics you are on? Sometimes you need to be tested for yeast or go on
an antifungal (diflucan for surface yeast or nystatin for deep tissue
yeast). If you have yeast you may need to also treat for leaky gut
(glutamine and aloe vera gel) and even if you don't have yeast just being on
antibiotics can cause it.
What do you use to decrease the inflammation? You may need to be on a small
amount of cortisone or cortef. There are many homeopathic antinflamatories
you could use since they took most of the prescription ones off the market.
Patience. It takes patience to wait for changes. Sometimes changes are very
subtle but they are there.
Best of luck
Cooky
AP 10 years
_____

Thanks John,
I want to persue your suggestions but I am not familiar with the term LGS.
Also, where can I arrange for the spittle test ?
Thanks for your help,
Marianne

Peggy, The symptoms you describe can be found in Children with Lyme Disease.
The ADD, developmental delays and RA signs can also be Lyme Disease. If you
email me privately, I can put you in touch with a person in Ohio who could
recommend a physician that is Lyme literate to test the boys. Don't bother with
just any physician as the standard test leave much to be desired. Adjunct
Professor Emeritus of Laboratory Science, Carol Fisch
************************************** Get a sneak peek of the all-new AOL at
http://discover.aol.com/memed/aolcom30tour

Hi, Marianne:
In most cases of RA there is some secondary infection or dysbiosis that causes
LGS and candidiasis. Consider doing the spittle test and candida-elimination
diet. We need at least 11g EFAs average daily. EV olive oil can make a part of
this, but especially borage seed (GLAs) oil and flaxseed oil. Avoid refined
sugars and starches and you will almost certainly notice a difference.
Good luck to You,
John
Robert Wiesboeck <rawie@...
Hi,
On the subject of diagnosis, I have RA (3 years, 2.5 years on AP, 2x100
mg Minocin. for 2 years then added Zithromax 2 x 250 mg twice a week and
2x250 mg Metronidazole twice a week).
Although my RA is reasonably controlled, I still have some swelling and
liquid blisters (nodules) on the back of my hands. My energy is very
limited.
Since it appeared I have reached a plateau, I searched for an
explanation and suspected that maybe a food allergy was involved. I did
a strict elimination diet ( only cooked vegetables, cooked fruit and
brown rice) for 14 days as described by Neal Barnard,MD in Foods that
fight Pain. The surprise was NO CHANGE in any way. Whats blocking my AP
from progress ?
Does anybody have a useful comment ?
As usual, thanks for any contribution.
Marianne

Hi,
On the subject of diagnosis, I have RA (3 years, 2.5 years on AP, 2x100
mg Minocin. for 2 years then added Zithromax 2 x 250 mg twice a week and
2x250 mg Metronidazole twice a week).
Although my RA is reasonably controlled, I still have some swelling and
liquid blisters (nodules) on the back of my hands. My energy is very
limited.
Since it appeared I have reached a plateau, I searched for an
explanation and suspected that maybe a food allergy was involved. I did
a strict elimination diet ( only cooked vegetables, cooked fruit and
brown rice) for 14 days as described by Neal Barnard,MD in Foods that
fight Pain. The surprise was NO CHANGE in any way. Whats blocking my AP
from progress ?
Does anybody have a useful comment ?
As usual, thanks for any contribution.
Marianne

Thank you all for replying and helping me understand this condition.
I knew I was getting down and after hearing from several of you, I
realize now it's the stress of emotions that has caused it.
Roni, I will be praying for you. I too am here for you whenever you
need me.
Thanks again to all.
Serena

Hi Lynnie. Read your story. It is very similar to mine. I have R/A & S/D. I
want to get in touch with you but my e-mail to your address was returned. Could
you please contact me. My e-address is martysfolks2004@.... Dolores from
NYC
lynnie_sydney <lynnie_sydney@...
I am hoping this will reach you because the email address in your
story seems to no longer be active. So the following is what I tried
to email you.
Dear Mary Jean
I just wanted to let you know that I read your testimonial back in
2001 when I casually googled Palindromic Rheumatism and your story
came up pretty early - that was in the days when you could find almost
nothing on the net about Palindromic Rheumatism. I wanted to let you
know that your story prompted me to go to the site you had mentioned,
then onto the RoadBack site, thereafter the book The New Arthritis
Breakthrough. I was at that time pretty symptom-free but I put it on
the back burner for if my condition ever flared again. I had been
diagnosed with PR around 1988 and had pretty much the same sort of
ride as you described. Terrible!!!!!! It had settled down, but I kept
remembering that my my Mother had had PR since her early 20's (only
they didnt have a name for it then) and in her mid 60's it the went
beserk. She has been on prednisone and methotrexate now for over a
decade and is paying the physical price for that.
I determined NOT to go down her road, hence my joy at finding your
story. Well my symptoms did flare up again in 2003 - so I went to my
GP and started on minocycline, pulse dose MWF. Since then, I have
halved my RF (from 692 to mid 300's) and my other markers e.g. CRP are
normal. Best of all, I have had no major flare ups for 3 years, no
excruciating pain, and no symptoms for the last 12 months. I am just
working on how I can reduce that pesky RF further so it's not hanging
around any more.
I really wanted to let you know that your post started me on a Road
to wellbeing for which I'll be forever grateful to you. Incredible to
think that I live the other side of the world and picked it up. Used
wisely, the internet is a fantastic resource! So, thank you so much
for taking the time to write that. It changed my life.
And lastly I wanted to know whether you are still doing well - and
what your 'road back' has been since 2001. I hope it's been an
uplifting one that's continued your journey back to health.
With best wishes and eternal gratitude
Lyn
Sydney, Australia

In my opinion, oh my, yes; more so than anyone wants to believe.

Why not consider going to a scientifically-oriented ND (naturalpath)
in addition to the regular doctors? The naturalpathic drs. may be
able to do further diagnostic work.
--
Esther Warkov, Ph.D
Member OMTA, SMTA
Founder, The Piano Connection
www.thepianoconnection.com
971.255-0388 (Portland)
pianos@...
esther_warkov@...

Good morning Peggy;
Here is an angle that you should check out.My dodtor is the best
AP doc in Ontario and treats many children that have both rheumatoid
diseases and ADHD.She has found that children with ADHD are likely to be
Celiac and therefore have many food sensitivities.She often gets them
cured without having to resort to antibiotics.Read www.celiac.com
and then order the test that you want at www.enterolab.com They mail
you a kit,you send in s stool sample and they e-mail the results.If they
have Celiac(wich is usually inherited) they will likely have issues with
other foods because of the damage done by gluten.You have to start
cooking from scratch and never,never used anything already prepared or
from a package because of hidden gluten and food colourings,not to
mention chemical preservatives and flavour enhancers.Hope this helps.
Lynne G./SD

Hi Everyone,
My name is Peggy, from ohio..I am a single parent three lovely
children..Ages are 15boy, 7girl, 5boy.. Oldest has adhd and
bipolar,daughter no signs yet but symptons of adhd,youngest has adhd
agression issues,developemental delays,bone and muscle probs,and now
showing signs of juvenilne rheumatoid arthritis..
My youngest is going to be referred to a pediatric arthritis dr to
see what is going on with him..That means further trips to the main
childrens hospital in cincinnati,ohio..I am on the go as it is with
his therapies and oldest sons appts..I thought I would check this
group out and get some insight on juvenile rheumatoid arthritis..Hope
to hear from everyone..
Have a Happy Thursday!!!!
Peggy

Hey Geoff, you almost rhymed!
"TWO steps forward minus one = one step better than you were when you
started."
Maybe we have a new motto here. How about:
TWO steps forward minus one = one step better than you began :-)))
take care,
Ute

Hi Kathy! Geoff here.
You wrote:
"I dont have my first appointment for AP till sept 18th. Im reading the posts on
herx and depression and getting scared! I work driving a school bus... I am not
allowed to take most medicines that I need (like narcotic pain , sleep aides,
anxiety..etc..) I dont have much sick time accrued yet either. Im wondering how
i will work if these symptoms appear?"
I've had RA for about 20 yrs now. I'm not what you'd call a success story --
that's why you don't see "my story" posted at rheumatic.org. I drove a school
bus for a few years while dinosaurs roamed the earth. No power steering, power
brakes, or automatic transmissions back then -- not even synchronized
transmissions. Everything was manual and double-clutched, even the cab-over
designs. I drove all the usual names and near the last drove some Bluebirds
with the air systems. That said, I think I may be able to help you out here.
You're over-reacting to the Herx question. "If" you have a Herx reaction, and
make no mistake about it -- it is an "IF" -- there are ways to compensate. The
rheumatic diseases do not normally use narcotics for pain management -- they use
anti-inflammatory like ibuprofens, aspirins, etc., which are not narcotic. So
no problem there.
Prednisone and prednisolone are common anti-inflammatory drugs that will give
you trouble. They're not on the Fed/State schedules as no-drive drugs, but they
affect your ability to cope with screaming, bickering and arguing kids so
they're a no-go as a matter of practicality.
On the "reality" side, you can schedule around any issues that may arise. When
you start the AP do so during the longest school break, e.g., summer vacation
when there is no summer school. This will give you time to adjust your dosage.
Once you get started like that, your issue should be easier. In general
Herxheimer reactions, "if" they occur, are less limiting and painful than the
disease proper, and subsequent Herx's, "if" they occur, tend to be less severe
than prior ones.
One of the issues that comes up with people is they tend to forget just how bad
they really were once they start getting better. Then if they do have a setback
-- and there will be setbacks -- they panic.
The description Dr. Brown gave of 2 steps forward, 1 step back is very
realistic. But let's not forget -- TWO steps forward minus one = one step
better than you were when you started.
HTH
Geoff
Acts 2:39

Kathy, Quit the drugs or the job. You cannot do both. You are
jeopardizing a bunch of innocent kids. Maybe you can take a different position
with the same company like dispatching or being a monitor on a bus that someone
else is driving. There are lots of options. But drugs and kids do not go
together. Besides, if you tried A/P, you wouldn't need all those drugs. Be
careful what you do. It could turn around and bite you and think about those
kids. Would you want one of your kids on your bus.? Dolores
Kathy <sunbriar@...
while on ultram er and tramidol and clonazapam and didnt have much trouble as
long as i was sitting. I tell my DRs I drive and I thought theyd know what i
could take or not, but then the yearly physiacals came around and it seems they
have a LIST of whats allowed or not and it doesnt matter how you can handle it.
Ultram made me stay wide awake (insomnia) and then thats not good for driving
either, Id forget things... Anyway I am trying to get a list fo the allowed or
not allowed drugs so I can give the list to my DRs. They do random drug testing
and if you have an accident they do mandartory drug testing and I was told by my
boss it doesnt matter if its a "legal" drug , that they would be liable if
anything happened. I drive my own car just fine, but they cant take any chances
with 60 little kids on a bus. and i do understand that. I wouldnt want my own
daughters driver to be taking drugs either.
Im not really stressing out about work, I could just quit as for the time being
I still have some income otherwise, Im just the kind of person who would not
suddenly just not show up for work one day..Id like to know way ahead of time
what my options are. actually I have alot to do at home and could even set up
some work from home (dog boarding or training) in 2 yrs i wont have that option
available. I also dont want to lose my seniority date at work (thats why id ask
for a leave instead of quiting) right now i have a nice bus run with nice kids
and if i leave i would lose my run and God only knows what awfull kids I might
end up with when I go back! (talk about stress..trying driving a bus load of BAD
kids)
As for meds, Im not allergic to any that i know of, but If theres a side effect
Im sure to get it! Like the ultram, worked GREAT for pain but I was wide awake
all nite! right now im doing tylenol except if Im haiving a bad day ill take one
tramidol in the morning only. Celebrex worked good for me too but they said my
blood work indicated a possible kidney problem and not to take any of those type
meds for awhile.
well Ive had my vitamins and ttylenol and I need to go start a very busy day and
very busy weekend. I really do too much and cant complain when im so sore
afterwards. Kathy
"

I dont have my first appointment for AP till sept 18th. Im reading the posts on
herx and depression and getting scared! I work driving a school bus... I am not
allowed to take most medicines that I need (like narcotic pain , sleep aides,
anxiety..etc..) I dont have much sick time accrued yet either. Im wondering how
i will work if these symptoms appear? I COULD take leave without pay for
awhile, but i was gonna wait and see how I do first. I have to take my sick days
just to drive to the DR as its probly 1 1/2 hrs each way. My boss is arranging
for me to get an "air door" on my bus to save on the opening and closing of the
doors, hes been real helpful to try and keep me working there (I could get
another job like teachers aide) but I prefer to work alone in my big yellow
office from home. I am currently trying to get a list of drugs that are allowed
(or not) by federal guidleings for CDL drivers, so i can take that with me to
the DRs offices . Right now Im am off work cause of the tramidol and
clonazapam... but its summer. I have a few weeks to find replacement drugs
before school starts again or I either go with just tylenol or I dont drive at
all, or i drive in pain, which is very distracting. Right now Im doing HUMIRA,
so far Im not sure its doing much for me, had 3 shots so far. Kathy

Kathy,
not every one herx's. and anxiety can contribute to the intensity of AR pain.
I hear a lot of stress in your posting.
my suggestions would be. drink water in place of other things when you can.
more fresh vegies. and when you can, if you can welcome the stressful feelings
and then just see if you can let them go.
I''m working on a booking an fretting and worry and how to stop doing that.
I'd be happy to send it to you if you'd like.
Jan
Kathy <sunbriar@...
I dont have my first appointment for AP till sept 18th. Im reading the
posts on herx and depression and getting scared! I work driving a school bus...
I am not allowed to take most medicines that I need (like narcotic pain , sleep
aides, anxiety..etc..) I dont have much sick time accrued yet either. Im
wondering how i will work if these symptoms appear? I COULD take leave without
pay for awhile, but i was gonna wait and see how I do first. I have to take my
sick days just to drive to the DR as its probly 1 1/2 hrs each way. My boss is
arranging for me to get an "air door" on my bus to save on the opening and
closing of the doors, hes been real helpful to try and keep me working there (I
could get another job like teachers aide) but I prefer to work alone in my big
yellow office from home. I am currently trying to get a list of drugs that are
allowed (or not) by federal guidleings for CDL drivers, so i can take that with
me to the DRs offices . Right now Im am off
work cause of the tramidol and clonazapam... but its summer. I have a few weeks
to find replacement drugs before school starts again or I either go with just
tylenol or I dont drive at all, or i drive in pain, which is very distracting.
Right now Im doing HUMIRA, so far Im not sure its doing much for me, had 3 shots
so far. Kathy

Sandra you are so nice I would never have thought you forgot me on purpose.
I finally got off the antidepressants this year. I take OTC SAMe now along
with an anxiety med. I still go thru bad days but I guess everyone does. The
fatigue and depression go together for me. I am glad I do not have a young
family or teenagers to deal with during those times and for that I am
grateful. I am also grateful that I now know that a herx or flare won't last
as long as they did 10 years ago.
Thank you Sandy.
_____

I have not replied to anyone lately regarding the candida question being
discussed lately but want to share with you what I am taking which I really
takes care of my problem. I know some take the pure oregano oil. I am taking
a
complex from METAGENICS which is called CANDIBACTIN-AR. This contains
oregano oil, thyme, sage and lemon balm. At first, I had a difficult time
taking
it as I had experienced problems with just the oregano oil giving me terrific
indigestion. I persevered with this and wow, has it helped the yeast. The
problem is that I cannot purchase it at any local health food store but have
to get it over the internet or doctor. As far as dosage, I began with one a
day for a couple of weeks and then upped to two capsules per day. Once I
thought I had the yeast under control, I went back to one a day and am doing
very well. Sandra
************************************** Get a sneak peek of the all-new AOL at
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Hi Emma,
If you have been having a headache you may have a problem. Get your blood
pressure checked. The depression may be a flare because it is killing mycos
in the brain or so I've been told. I just had lots of depression all the
time and at times it got worse. It also (depression) has something to do
with the disease itself.
Hope it goes away and you do not need to stop the Minocin.
Cooky
_____

Hi I don't post much either.. been on antibiotics for 10 yrs and fought
yeast all along. Oregano works better for me than anything else. I took
it at the same time I took the antibiotic,,,away from the probiotics by
several hours. Can't guarentee that the probiotics are as effective as
possible but the antibiotics wipe them out anyway so it made since to me to
take the oregano at the same time as the antibiotic then several hrs later,
take the probitics. It works for me.
Cari
rbarna@...
Hi everyone:
I don't post much, but I learn so much from everyone's experience. Someone
posted earlier how they use oil of oregano along with probiotics to keep
fungal infections at bay....
Question about that......from anyone's experience....can you take oil of
oregano with probiotics? I'm thinking that the oil of oregano would defeat
the purpose of the probiotics, but not sure if my logic is correct.
Thanks
Roni

Hi Roeann,
I had my first Humira injection on Friday. I have not expierenced
any headaches yet. I hope you are feeling better soon
Shari

I, my son and mom do- but we are in FL- so the study is a no go for us...

How many people are on this boatd who have Asthma?
Mycoplasma Registry GWI&CFS <mycoreg@...
* * * * * * * * * * * * * * * * * *
MYCOPLASMA REGISTRY REPORTS
for gulf war syndrome & chronic fatigue syndrome
© 2007 Sean Dudley & Leslee Dudley. All rights reserved.

Hi Marti,
Hope you get approval for the double dose of Enbrel soon. You're so right -
merely existing during the cold winter months can sap up so much energy.
This has been a very difficult winter so far - 66 F one day, low of 14 F
tomorrow. Fifty degree temperature swings are not good for anyone, let alone
people whose disease is as fickle as the weather.
Ha, yes, - I have a great rheumy who is consistently listed in the 100 best
doctors in NYC and we have a great relationship. I don't let him get away
with anything - I ask 20 questions each visit, I make him listen to what's
going on with me, we go over my blood results, I clip articles I want to get
his
opinion on AND we spend a few minutes talking about his son's soccer match,
our blue-people-in-blue-state feelings about politics, you name it. I am
always mindful that even though he is the head of rheumatology at a teaching
hospital, he works for ME and I help pay his salary. It's my disease so he and
I are unequal partners in the battle against PA (it is much more MY battle
than his so I'm commander-in-chief while he's the head of the joint chiefs of
staff. Like most people, I went through several rheumies before finding the
right one and along the way I learned a lot about the need for me to take
ultimate responsibility for my treatment. It took me a long time to realize
this, but at night my rheumy doesn't have to live with the pain of the
treatment
he's laid out for me - I do - so the buck must stop with me.
Well, one month of winter down. We're on the march to spring!
Best always,
Kathy F.
In a message dated 1/16/2005 8:14:12 PM Eastern Standard Time,
mlw402@... writes:
Hi Kathy,
Thanks for asking. I am hangng in there. My worst pain seems to be
in my neck, back, and hips with my hands and feet beng somewhat
better. My main problem is fatigue to exhaustion and we are going to
try and adjust my meds around to see if it helps any. I am awaiting
approval to double the Enbrel dose.The weather has been subzero here
after 14 inches of snow so I know that adds to the exhauastion...just
getting out and getting around in it uses up energy.
I am always impressed with your rheumy, although I know a lot of the
ideas are yours. It sounds like the 2 of you have really come up
with a good plan to get you back up to speed. Hope it will work for
you soon!
xoxo
Marti

Hi,
I broke out with a large amount of blemishes when I first started Stiefel. I
think it's more effective than the Lederle. My reasoning is that they sold
me Lederle that was outdated. Of course it did not say so on the label. I
also have not had a flare since spring and this is my normal bad time of the
year. I have been on Minocin since the fall of 1997 with changes to
tetracycline at 5 years then back to Minocin and a few other times for
flares that did not respond quickly. I was also on IV's for about 5 years.
Cooky
_____

Thanks to all of you have responded with support and advice. My Rheum. has
talked of putting my on Enbrel but I must admit I have been the one that has
balked somewhat. I was concerned of the newness of the drug and wasn't sure
about the potential side effects. I have a friend who has RA and she takes
enbrel and says she averages about 2 hospital stays a year due to infections.
Has that been a problem with anyone else. I should say that I am a middle
school science teacher and of course work in a cesspool of kid germs!
I have seen another rheum. at the Mayo Clinic who gave me some advice and I
intend to revisit him sometime in the future to see if he thinks the plan of
action is OK since it was a year ago I saw him.
V
ddj972000 <ddj972000@...
Hi Kim,
My name is Debbie and I am new to this site myself but I had to tell
you that I totally agree with what the others have posted for you. I
am on my third rheumatologist but I am finally getting some relief.
My first one was about like yours sounds. She was a very nice lady
and I liked her as a person but she just wasn't hitting the mark
with my treatment. I actually stayed with her longer than I should
have because I liked her. My second was great and was doing a good
job on me but after I was with her for approx a year she became very
ill herself and had to leave her practice. She is the one who
refered me to my current rheumy and I am so glad she did. Over the
past few years I have gone through the progressive drug cycle that
most of them put everyone through. Celebrex, Prednisone, MTX, Arava,
etc... I basically had the same results you are describing. I have
now been on Enbrel for a little over a year and it has worked
wonders for me. I have two young grandsons ages 6 and 9 who live
with me and believe me they are both all boy and very active but I
can now pretty much keep up with them. I still get tired a little
too easy for my liking but we actually enjoyed a good summer going
on picnics, to the jungle gym and even brief hikes at some of the
state parks.(nothing extreme) There is no way I would have attempted
any of that before Enbrel. So hang in there. Get you a new rheumy if
you need to and get on the right meds for you. It will make an
amazing difference in your entire life. If you want to stay with
your current rheumy I would just get some information together on
alternatives such as Enbrel, Remicade, etc to take to your next
visit and tell him/her point blank that you are not satisified with
your current results and want to explore other treatments. If you
have a good doctor they will listen because you know your body
better than anyone else and it is your doctors responsibility and
duty to provide you with the best treatment plan possible. But only
you can make sure that is done. Well enough of my preachy remarks.
It's just that I've learned the hard way that I can't worry about
offending a doctor if I want answers and good treatment plans. I
have to get the knowledge wherever I can and go into that office
prepared. I have to take care of me. Most doctors actually find it
refreshing for a patient to come in knowing what they need instead
of just relying totally on them. It's trial and error for all of us
especially the doctors so if it's error shout it out :)
Later,
~Debbie

Hey Geoff, do you live in Calgary? If so, who do you use for a Doc?

Hi Kim,
My name is Debbie and I am new to this site myself but I had to tell
you that I totally agree with what the others have posted for you. I
am on my third rheumatologist but I am finally getting some relief.
My first one was about like yours sounds. She was a very nice lady
and I liked her as a person but she just wasn't hitting the mark
with my treatment. I actually stayed with her longer than I should
have because I liked her. My second was great and was doing a good
job on me but after I was with her for approx a year she became very
ill herself and had to leave her practice. She is the one who
refered me to my current rheumy and I am so glad she did. Over the
past few years I have gone through the progressive drug cycle that
most of them put everyone through. Celebrex, Prednisone, MTX, Arava,
etc... I basically had the same results you are describing. I have
now been on Enbrel for a little over a year and it has worked
wonders for me. I have two young grandsons ages 6 and 9 who live
with me and believe me they are both all boy and very active but I
can now pretty much keep up with them. I still get tired a little
too easy for my liking but we actually enjoyed a good summer going
on picnics, to the jungle gym and even brief hikes at some of the
state parks.(nothing extreme) There is no way I would have attempted
any of that before Enbrel. So hang in there. Get you a new rheumy if
you need to and get on the right meds for you. It will make an
amazing difference in your entire life. If you want to stay with
your current rheumy I would just get some information together on
alternatives such as Enbrel, Remicade, etc to take to your next
visit and tell him/her point blank that you are not satisified with
your current results and want to explore other treatments. If you
have a good doctor they will listen because you know your body
better than anyone else and it is your doctors responsibility and
duty to provide you with the best treatment plan possible. But only
you can make sure that is done. Well enough of my preachy remarks.
It's just that I've learned the hard way that I can't worry about
offending a doctor if I want answers and good treatment plans. I
have to get the knowledge wherever I can and go into that office
prepared. I have to take care of me. Most doctors actually find it
refreshing for a patient to come in knowing what they need instead
of just relying totally on them. It's trial and error for all of us
especially the doctors so if it's error shout it out :)
Later,
~Debbie

Shar,
There is not the same risk of rupture as there is in the achilies.
She wrote of getting injections in her trigger finger.
Nancy

Allison, You are QUITE rightm, the problem with the ENBREL is that it is an
Rx and the Remicade is a "PROCEDURE". Each year I hold my breath when it
comes times for renewal of health insurance.
Nancy

Cheer up, September is not too far away. I wish you didn't have to take the
humira, but if you can't function, then you have to do what you have to do.
These diseases are frustrating enough without having to satisfy reluctant docs
who are not willing to take the time out to listen to the patient. I'm lucky
enough to live in a big city where there are thousands of docs and still we had
to fly to Boston for the first time to get my antibiotic. If you live on a
farm, there must be a vet nearby you can talk to. They seem to know so much
more about medicines than some doc's that are stuck in last century's medical
practises. Maybe they can steer you to a doc who will give you an antibiotic Rx
to get you started. They make such a big deal out of writing a script for
Minocin knowing that for 40 yrs., they have been giving it to teenagers for acne
w/o any bad side effects. All it is, is a form of tetracycline. This doc is
pushing Humira because of the Pharmaceutical
Company that gives him his freebies. Too much humira will interefere with your
healing process so hopefully you won't be on it too long. Doc's like your's
really upset me. I walked out on quite a few of them before I flew to Boston.
Good luck, I feel for you and wish you all the best. Dolores
Kathy <sunbriar@...
is no one here that will give me the AP. I did speak to my family DR also and
she said she would read up on it just so she would know what i was doing, but
she said she wasnt comfortable doing it. So the best I can do is I made an apt
with a DR near DC, but theres a 2 month wait to get in (actually 3 months but i
got a cancelation apt in september) and its probly a 2hr drive each way so i
will have to take off from work. so I plan to get on the AP as soon as i can,
but it wont be till september 18th. In the mean time, Ive had people tell me
theyve done well on humira and my local DR prescribed it so i am trying it. Ive
had 2 shots so far but dont see any difference yet. Also Im trying to deal with
this without major pain drugs, I only take one tylenol arthritis pill and use
heating pads. I am still working hard but alot slower and have to quit sooner
(we are clearing brush and I drive the
tractor) , anyway I WILL get on the antibiotics but i have no choice but to
wait to see the new DR in september. Kathy

It may sound simplistic but learning how to describe and quantify
chronic pain can really be helpful when seeing a doctor.It took me
awhile to catch on how to do this. I try now to use the pain scale
of 1-10..and the pictures they use for children helped me figure out
what number to use. Other ways include describing daily activities
that you are able to do or not to do. And including how well you are
able to sleep helps too. Very often a good doctor will ask these
questons but if they don't ask them I find it helps to bring them up
myself.
I am singing Cathy from Mass' song..I sustained joint damage with
little swelling so it was important that the docs knew MY experience
and not just go by their observation of the joints and the labwork.
Unfortunately, I had several rheums who were trained just to look at
these indicators and to ignore the patient's report. I saw a whole
study on this...and it seems so common sense for those of us
experiencing bad pain.
good Luck with the book!
Marti

Hi Kathy,
Thanks for asking. I am hangng in there. My worst pain seems to be
in my neck, back, and hips with my hands and feet beng somewhat
better. My main problem is fatigue to exhaustion and we are going to
try and adjust my meds around to see if it helps any. I am awaiting
approval to double the Enbrel dose.The weather has been subzero here
after 14 inches of snow so I know that adds to the exhauastion...just
getting out and getting around in it uses up energy.
I am always impressed with your rheumy, although I know a lot of the
ideas are yours. It sounds like the 2 of you have really come up
with a good plan to get you back up to speed. Hope it will work for
you soon!
xoxo
Marti

Hi, My name is Keli, I'm 26 with PA. I was dx'd about five years ago
although I had symptoms since I was about 16 years old. It took me
five years to get my diagnosis. Granted I had to switch rheumy's to
get the dx. I lived in dire pain for the last 10 years until last
year I began enbrel injections. I am doing 90% better. Skin and
arthritis both doing better. Whoever told you to just accept it has
no idea what it is like to have this disease. If you are still have
a lot of pain and Psoriasis, I would look into another doctor. There
are other treatment options out there. Enbrel, Humira, Remicade,
just to name a few. Never give up there are always options.
Good luck,
Keli

Hi Kim,
Welcome to the group but sorry to hear that you are a fellow PA sufferer. I
am very surprised to hear your rheumatologist say that have to "accept"
modest relief. There are SEVERAL other newer medications, especially Enbrel,
Humira and Remicade that provide excellent, in some cases life changing relief,
to many people. You have in no way exhausted the list of wonderful
medications that work miracles for some people. I suggest that you consider
finding a
new rheumatologist if he/she thinks you should accept mediocrity without even
trying to go for the gold. Some people have also had phenomenal results
from diet changes, herbal treatments, yoga and other alternative forms of
treatment. You are way too young and have tried way too few treatment options
for
anyone to say to you that you have to accept feeling bad. Read our archives
here and you will find discussions on Remicade, Enbrel and Humira that I
think will convince you that you don't necessarily have to settle for a
lifetime
of feeling bad.
Wishing you wellness,
Kathy F.
In a message dated 1/16/2005 2:00:15 P.M. Eastern Standard Time,
kvrtiska@... writes:
Hello all, I am a new member to the group and was diagnosed with PA about a
year and a half ago. I have had mild psior. for about 10 years or so. I am
currently taking Methotrexate, clinoril and sulindac. They have relieved
some of the symptoms and I feel better but not great but have been told to
accept that. My question for you all is has anyone had any success with other
methods of treatment? Does glucosomine help at all with PA? I am 37 years old
with three young children and want to be able to enjoy activites with them.
Thanks for any help you can provide.
V

Hi Dee,
My holistic dr switched me to doxy 3x's wkly (100 mg, 2 daily) and zithramax
twice wkly from minocin (7 yrs also on minocin) since I was feeling not so
great. It seemed to do the trick and after about 2 wks, definitely felt less
pain
and stiffness in joint areas. His logic is that sometimes the body needs a
change and no doubt down the road, he'll put me back on minocin again. I think
many people in our group have experienced this.
hope this helps a bit
Judy
**************************************
Get a sneak peek of the all-new
AOL at http://discover.aol.com/memed/aolcom30tour

Hello all, I am a new member to the group and was diagnosed with PA about a year
and a half ago. I have had mild psior. for about 10 years or so. I am
currently taking Methotrexate, clinoril and sulindac. They have relieved some
of the symptoms and I feel better but not great but have been told to accept
that. My question for you all is has anyone had any success with other methods
of treatment? Does glucosomine help at all with PA? I am 37 years old with
three young children and want to be able to enjoy activites with them.
Thanks for any help you can provide.
V