Stay away from the soy protein....it is disgusting. Do you have a GNC
by you? They have a great flavored vanilla that I use in my smoothies.
You could use half a scoop of protein and 1 cup of Carb Countdown milk
instead. I know I tried the soy stuff and I about gagged. The non-soy
stuff is much better. I don't have the can with me, but if you want the
name, email me at rdelong@...
Robin
has anyone had their gallbladder out and lost more weight after? i
was on a plateau for over a month while i had problems with my gall
bladder and i just had it out thursday and since then has lost 5
pounds. so now i am at 92 pounds lost. does having the gall bladder
out make it easier or harder to lose weight?
lauren
12/29/03
300/208/160??
I would definitely recommend Carnie Wilson's books, Gut Feelings:
From Fear and Despair to Health and Hope and I'm Still Hungry:
Finding Myself Through Thick and Thin. I've only read the first one
but it was very funny and easy to read. I also asked my mom to read
it and she was less scared and more supportive of my decision to have
surgery after she read it. It also was chock full of information
about the surgery and post op stuff like gas and hair loss. I liked
that it was from a first-hand perspective of someone who had this
surgery rather than from a doctor's perspective. There's a large Q&A
section of Gut Feelings that I found helpful in compiling a list of
questions to ask my doctor at my first consultation. Hope this helps.
Carolyn
Hi Jenise, welcome to the group. Cindy in MI 11/24/03 316/206/145
dream_angel416 <dream416@...
My name is Jenise...I'm 23 and I'm new to all of this, but I've been
Hi,
My name is Jenise...I'm 23 and I'm new to all of this, but I've been
I never got a list, so thanks a million!! I really needed to have this!
Staci
Di,
I have joined this site a about 2 weeks now and i keep randomly
signed onto chat and never find anyone. I live un Ct is the chat 7pm
my time or Calif time??? please let me know. i would love to chat
with others to get info what the ins and out are for before surgury
the 18th of Aug and pointers after surguy,
Take care
Patty S
good luck with the info you get tomorrow, if it is
meant to be then it will happen , i have done alot of
praying the last 6 months about if i should do this
but it has worked out so i have my surgury the 18th, i
am so ready, only you can make that decision if you
will continue with having it if it gets delayed. Good
luck in your decisions
Patty S
=====
Have a great day!
Patty Schroeder
I have found that just like when I go on vacation or even an
overnight trip I tend to overpack when I go to the hospital. (Just
ask my husband hehe)
I always think I will need and do a lot more than I ever need or do.
So, my advice is to pack lightly.
I wore ths same clothes home that I wore in and made sure the pants
were very loose at the waist because of incisions.
I also brought with me and used:
-toothbrush
-toothpaste
-brush
-shampoo
-deoderant
-a calling card
-undies
-my own jammies because I hate hospital gowns no matter how much
people tell me they are better to use because of the IV!
I think that is about it. I never read while in the hospital because
I am always way too out of it on pain meds and after effects of
anasthesia to read or do crosswords etc. I generally turn the tv on
and space out on that and never remember a thing I watched 10
minutes after watching it.
As for tips at home. I just suggest a lot of rest and make sure your
house is clean before you leave for the hospital so you won't have
to worry about it at home afterwards.
A good support person helps tremendously as well. As does a
recliner! I slept in mine the first few days home because it hurt to
sleep in my bed.
That's all I can think of for now! My best to you and
hope everything goes smoothly for you.
Colleen
Lap-RNY 11/03/03
315/195/???
Hello everyone, as you all know my psyc evaluation was did today,
and all weekend I was so happy cause I am suppose to have surgery on
Thursday (Aug. 5th) now today I find out that I might not be having
surgery, because the psycharist say he don't think I am ready for
taking the surgery he said that my test reveals that I have alot of
depressive issues I need to straighten out before having the
surgery. However, I am suppose to call him tomorrow and I will know
if I am going to be able to have it by Thursday.
What I did not understand is, I understand people trying to
discourage you from having the surgery but my psyc doctor really
tried to discourage me from having the surgery.
Like I told my friend the longer I go without having it the more I
think about not having it because of what people are saying, but it
is really something I want to do, because I feel then I can get a
job with the education I have. I want get all furstrated in
disappointed until after tomorrow, so I am asking all you guys to
please pray for me. Still can't get over the things the doctor was
saying to me about the surgery. I will keep u all posted.
I'm just starting the mandatory classes this Thursday. Any advice or
can anyone "let me in on" important info the Doctor doesn't tell ya,
(i.e. only someone who has gone through this would know, etc)????
Hello. All the advice is so appreciated. I am feeling better about
my surgeon today. I have talked to him and my questions have been
answered. He has had one patient die from a blood clot going to her
lung after surgery. Him not being able to do the surgery at the
hospital was just hog wash. I feel much better after talking to him.
Love,
Sherry
I'm over 7 mths out from my surgery and my doctor and nutrionist both said it
was fine for me to take some of the medicines on your list as long as I didn't
on an empty stomach and that I buy the types that are easy to disolve. Anyone,
even people that haven't had the surgery can have ulcers result from medicines
if they take too many, too often, on an empty stomach, etc. Some people are
more supseptible to ulcers than others also so I say check with your gastric
specialist that knows your own body and if you're not sure than wait cause its
always better to be safe than sorry. I am careful how I take my vitamins as
well as my Aleve or Advil (which I only need once in awhile) and I feel great!
I hate to think of how I'd feel without them:)
CY <collyyv@...
happen that one
Dr will ok a drug and another will not based on his/her knowledge
and experience with the drug and his/her patients.
I posted the list as a guideline but like anything else said here
please consult with your own Surgeon or Dr. or do your homework on
the drugs before taking them.
I know several people who have had some serious problems with ulcers
due to taking medicine after surgery that should not have been taken.
Unfortunately our Dr.'s are not all-knowing beings as much as we
want to believe they are!
Colleen
Lap-RNY 11/03/03
315/195/???
Ray, You went years not enjoying yourself because you felt self-
conscious. Now is the time to enjoy life, as long as you are safe. I
personally would love to see the tattoo. I plan to go back to
dancing lessons once I can do so with out a heart attack. Life is
short. Live it now!
_____
From: Maggie Cline [mailto:m1cline@...]
Sent: Monday, August 02, 2004 2:03 PM
Try going to vitalady.com. You can purchase sample
drinks there, which each pkg for 1.99 is enough for 2
shakes. This will give you an idea of the type you
really like. I love the banana scream and any of the
fruit punch flavors.
Reminder Reminder from the Calendar of Gastric_Bypass_Family
Weekly Group Chat!!
Monday August 2, 2004
7:00 pm - 10:00 pm
This event repeats every week.
Notes:
---Wow!!! 91 pounds in 15 weeks!!! I've never heard of thatmuch
weight loss in such a short period of time. I'm almost 12 weeks out
and I've only lost 54 pounds!! But I"m VERY happy with that. I use
Isopure whey protein drinks. I love them; 25 grams of protein per
scoop and you can mix it in a blender with fruit. Its also carb-
free!! You can get it at GNC or any store like that.
Hope that helps
Jennifer
LAP RYN
5-12-04
291/237/160-goal
As many of you know, I was just approved for surgery last Thursday. I
should get my date tomorrow or Wednesday. I'll let you know what it
is as soon as I know.
My question is this: Does anyone have any suggestions as to what I
should bring with me to the hospital? I've never stayed in a hospital
before and am kinda scared. Also, is there anything I should have at
home for easy recovery? Any tips would be greatly appreciated.
Carolyn
Hi all,
It's been almost 15 weeks and I've lost a total of 91 pounds thus
far. I have approximately 70 to go. Some proteins are making me feel
nauseous and I'm having a hard time getting enough in.
Well, now that I'm sick to death of my hair falling out - I've
started taking the hair, nails, skin vitamins, along with my other
vitamins, calcium and foltran (spelling). I'm now drinking a protein
shake a day (25 grams of protein per serving), but I have to admit
that the taste is the most vile thing I have ever experienced. LOL
I will drink them if only to keep my hair. I bought some unflavored
soy protein powder.
PLEASE PLEASE PLEASE if you have any suggestions on a specific type,
brand, flavor that will make this even a little easier, I will be
forever in you debt. I would offer my first born, but she's a real
pain in the butt and you'd just send her back, lol
thanks for your time
Patricia
Ray, I think it's little of both. You've a certain size for so long, and now you
are enjoying yourself...what your wife in between the lines is trying to say is
"that she's worried about how far you are planning to go, i am sure she's aware
of how you feel, but she might be afraid to loose you, share things w/ her. Take
her for rides in the motorcycle and let her know that you are there for her.
..Mimi--YES!, Share the PICS!!
Ray <rww8719@...
have follwed my
adventure into the losing side, I have yet taken another step (okay,
more of a leap)into life. In the past six months, I've dropped 120
pounds, down 10 pant sizes, from a 5XL T-shirt to a 2XL and bought a
new Harley-Davidson. Now, at 47 years of age, after some prodding
from my wife, last Saturday I got a tattoo (I'll post if interested).
It is almost surreal to think that I would take that step, but I did
it and I really like the art work. Question is, will I still feel the
same when I'm 64? So I'm wondering if you guys think this is just
feeling good and enjoying the new life or a mid-life thing... maybe a
little of both is what I think. Told my wife, if it is mid-life, it
could be worse than a tattoo.
-Ray
some one put Vioxx on this list as a drug that can hurt your pouch, well, my
doctor subscribed me vioxx the week after my surgery, so this dont make any
sence..
amy
CY <collyyv@...
I was told definately NO Ibuprofen (Advil)
Colleen
This doctor sounds scary. I'm guessing you don't feel comfortable
placing your life in his hands and I don't blame you.
Advice? Definitely....RUN to another doctor.
Alicia
11/18/03
284/249 preop/159
I cannot believe I did but for those of you that have follwed my
adventure into the losing side, I have yet taken another step (okay,
more of a leap)into life. In the past six months, I've dropped 120
pounds, down 10 pant sizes, from a 5XL T-shirt to a 2XL and bought a
new Harley-Davidson. Now, at 47 years of age, after some prodding
from my wife, last Saturday I got a tattoo (I'll post if interested).
It is almost surreal to think that I would take that step, but I did
it and I really like the art work. Question is, will I still feel the
same when I'm 64? So I'm wondering if you guys think this is just
feeling good and enjoying the new life or a mid-life thing... maybe a
little of both is what I think. Told my wife, if it is mid-life, it
could be worse than a tattoo.
-Ray
I was told this at every pre-op appointment and was given a list by my
doctor when I left the hospital and has been mentioned at our monthly
support meetings. Robin
Message: 1
Date: Sun, 1 Aug 2004 14:22:06 -0700 (PDT)
From: Bridget Northam <bridgetnortham@...
Subject: Re: Re: VERY IMP../WHAT TO AVOID??
We can't have Advil or Aleve or Anacin? Geez, there's like hardly
anything on your list of medicines that are okay! I am wondering what
others have been told because this is the first I heard of Aleve or
Advil damaging the pouch . . .
CY <collyyv@...
Here is a list from another group I belong to of the pouch damaging
meds to avoid after surgery and the ones that are ok:
Check out obesityhelp.com. Search for a surgeon in
your state/area and you can even read testimonials.
Hi Shershy 1974: I am sheryl in NM. I am 2 years out and I had a great surgeon.
I would not go to any one that hasnt done a lot of surgeries. I would rather go
200 miles away from home than to possibaly die.I think you are wise to question
this surgeons ability. I am loosing slow but have had no complications so far. I
seem to have a little problem with my stomach lately and I may have to go
through another Upper Gi.I hope I dont have an ulser.I am on Viox for authritis.
I have a bad right knee and I still have about 150 lbs to loose yet before any
thing can be done.I started at 516 and now I am at 365.I raised my son and now
he is on his own and doing very well. I know you can find a great sergeon.
Please keep looking around. I hope you do alright soon.
Sheryl Miller Open Rny July 22, 2002 516/365/200?
shershy1974 <shershy1974@...
Hello everyone. I have heard some "stories" about my surgeon that
have me worried. He has just begun to do the procedure and I have
heard that he has had a couple of patients die. I was also told that
he is not allowed to do the surgery in the hospital that I am
planning on using. I have not heard anything from him or his office
about that, though. I was told at my consultation that he had not
done many of the surgeries and that they were currently revising the
procedure (required testing and such). I have already gone to the
first of my psych. eval. and have an EDG scheduled for Tuesday. I am
worried that if I decided not to use this doctor that it will screw
up my chances of being approved for surgery by my insurance. I had
contacted a surgeon about 200 mile away from home before going to see
my family doctor and being referred to this surgeon and am planning
on calling his office tomorrow to get their advice. Does anyone have
any advice about this?
Hello everyone. I have heard some "stories" about my surgeon that
have me worried. He has just begun to do the procedure and I have
heard that he has had a couple of patients die. I was also told that
he is not allowed to do the surgery in the hospital that I am
planning on using. I have not heard anything from him or his office
about that, though. I was told at my consultation that he had not
done many of the surgeries and that they were currently revising the
procedure (required testing and such). I have already gone to the
first of my psych. eval. and have an EDG scheduled for Tuesday. I am
worried that if I decided not to use this doctor that it will screw
up my chances of being approved for surgery by my insurance. I had
contacted a surgeon about 200 mile away from home before going to see
my family doctor and being referred to this surgeon and am planning
on calling his office tomorrow to get their advice. Does anyone have
any advice about this?
Does anyone know of a good WLS Dr. in Louisiana? I am considering the surgery
and would like to hear if anyone does know about a dr in this area. Thanks.
Mary
Bethany - you have been upfront from the beginning. If you were
missing work because you wanted to hang with your friends, that's
one thing, but you have good reasons why you missed.
You have been honest with your employer, so go in with your head
held high.
Your health is more important than anything. Sometimes you just get
sick. I know that I have been really embarassed when I was a new
employee and was sick, but sometimes there is just nothing you can
do about it. Hopefully, they can be more understanding or you can
find a job where the employer has more compassion for a valuable
employee.
Congratulations on your progress!
Caryn
Bethany, you certainly did nothing wrong by having to miss work due to
horrendous pain and other complicaations. You must come first, or you will be
setting yourself up for more illness. When I went past my endurance at work a
few
years ago, I ended up in the hospital with pneumonia, which caused me to be
fired in my new job. Please do only as muchas you can, as you are still
recovering and school and your health come first. Best wishes and God bless.
Brenda Joihnson
Mankato, MN
RNY 12/99
I am a college student and in April received a student worker
position at the conference center at my school. Upon interviewing I
was honest and explained the STRONG possibility of me having surgery
during the summer in which I would be out of work for 4-6 weeks.
They thanked me for being up front and honest and hired me for 15-20
hours per week. Well, I was gone after surgery for 5 weeks due to
dizziness and other side effects. When I returned to work, my boss
and her assistant began haggling me and telling me that I was not
100% and not to come back until I could give 110%. Well, most of you
know that we have setbacks, complications, and possible sickness
from time to time and especially after surgery we need to let our
bodies adjust. Recently I have been getting migraines, mostly in the
last three weeks. I went to work with these migraines and worked 25
hours per week. They wanted more and more and more. I kept going to
work with horrible migraines because the animosity was apparent
since my surgery. Has this happened to anyone else? Due to my
complications with migraines, tmj, and grinding my teeth I was
forced to have emergency appointments thursday and friday, thus
missing work due to excrutiating pain. My bosses said that they need
to rethink my position because I missed two days with doctors notes.
I am going to work tomorrow morning for the big GRILL session. Has
anyone had this situation at work? How did you resolve it? I had an
evaluation last week and they told me that I am efficient, accurate,
and more productive than any other student worker they have ever
had. They told me that since I had surgery that it was a problem and
was reflected in my evaluation. I know that this is just a part-time
job and that I am a student and need to really remain focused on my
health and school, I am just frustrated and scared to face them
tomorrow. I guess that I just need to be reassured that I did
nothing wrong by missing work for surgery and emergency
appointments. Anyone with comments please help me and my nerves!
Bethany
281/261/220/150
Everyone is different in their healing process. I would never
recommend any less than 4 weeks off even for lap surgery. This is
major surgery and even if you feel great by week 2 your body may
require more time to heal and rest. You can always put in for 4
weeks but go back after 2 if you really feel you must?
There is the possibility for complications that could make your
healing time longer. I know it took me longer to heal after having
two surgeries the same week due to complications.
I know that when I undergo anasthesia my body just reacts very
strongly to it and I am tired for weeks afterward. It took me months
to feel "normal" after my Hysterectomy 4 years ago and it took me a
good 6 weeks to feel like I didn't need a nap halfway through the
day after my Bypass.
As far as pain...I don't really remember to be honest so it probably
wasn't so bad for me. I do remember I didn't sleep lying on my side
for 2 months after surgery. I sort of propped myself up on pillows
and slept semi-sitting. That's just me though.
Colleen
Lap-RNY 11/03/03
315/195/???
Hi everyone. I am extremely new to this. I just got approved about
4 days ago and was wondering about the pain issue after surgery.
I'm having the surgery done laprosicly and thought maybe one of you
could tell me. I was wondering how long I should take off work and
class. Any message would help. Thank you
This is not a "per doctor" issue. Confirm with yours for the sole
purpose of being told exactly why. But we cannot have anything with an
aspirin base or any anti-inflammatory medications. There was a patient
of my doctors (and I did confirm this with the doctor) who took 2 Aleve
not thinking about what she was doing and they sat and sat until they
essentially ate a hole in her pouch, when the pain and discomfort
started the doctor went in a discovered the problem. As long as it's
Tylenol or Nyquil it's ok, anything else needs to be confirmed is
pretty much what I go by.
Carrie
Lap RNY April 9, 2004
348/277/140 (begin/current/goal)
www.carrieburns.net
We can't have Advil or Aleve or Anacin? Geez, there's like hardly anything on
your list of medicines that are okay! I am wondering what others have been
told because this is the first I heard of Aleve or Advil damaging the pouch . .
.
CY <collyyv@...
Here is a list from another group I belong to of the pouch damaging
meds to avoid after surgery and the ones that are ok:
Approved and Unapproved Medications for WLS Patients
Here's a list. Keep it handy.
I was told from day one no Advil. I take aspiring free excedrin or Tylenol.
Pam
I was told no aspirin products. But I took Vioxx and my surgeon said it was
fine. But I am totally off of it now and have been since 3 month out.
Okay, I must admit that I was never told about this drug thing and have been
having female complications. I have been sucking down Midol and pamprin like
crazy.... what am I doing to myself here?? I'm a little worried now. :(
It blows me away that something as important as this was never emphasized by the
surgeon to some people. I am still pre op and my surgeon spoke of this in the
seminar I went to before even deciding on the surgery, then it has been
mentioned in almost every conversation I have had with my surgeons office since.
What do these people think, that patients are going to do, just wake up and know
this? It sure seems like some surgeons after care is lacking.
Alice hardestyal hardesty@...
Haven't tried it recently, but used to use Beano on occasion.
Luckily, my problem has settled down and I have no problems since
going back to work. The increased activity seems to help somehow.
Beano worked for me inconsistently; everyone is different - so it
might work great for you. I would assume that it is okay to take, but
better to ask the surgeon's office, just in case.
The first initial weeks, I had bad gas build up that would alleviate
itself, so to speak. I was dying for some mint tea, but wasn't
allowed tea yet. Now that I can hae tea, I no longer have gas pains,
except rarely. Janet
Anybody have any luck using Beano for gas? I get extreme flatulence and
it seems worse when eating things I shouldn't eat. Even it in tiny
amounts.
Has anybody used other remedies such as Ginger? I heard powerdered
ginger is good for gas and that bloated feeling.
Jenn
you are on a military budget? are you by any chance in
Ct?
Just wondering i am and wondering if we live close by,
maybe i can help ya if need be
Patty S
=====
Have a great day!
Patty Schroeder
Hi there! :)
I am trying to put together a "must have" shopping list for my
return home from the hospital. I go in on AUG 10th and want to be
prepared!
We are on a military budget, so any suggestions regarding Protien
Supplements and Stage II items would be GREATLY appreciated.
Thanks in advance!
Jenn
http://www.obesityhelp.com/morbidobesity/profile.phtml?
N=D1083450400&NoStatic=1
Thanks Laurette! You've always been very responsive and supportive
to so many. I'll be sure to post as soon as I find something out.
Have a great evening!
Linda
Linda
Congratulations on getting your approval. Things will hopefully move quickly
for you. I know how the waiting can make one anxious.
Congrats to all the others I missed that got their approvals and dates too.
Please keep us posted on how things are going with each of you.
Take care and God bless!!
Laurette
4/23/04 open rny
309/290/244/150
Hey Family,
I am also approved! Got my letter in the mail today and I am so
excited and now anxiety has set in. I am starting my new job on
Monday and will keep it silent until I get my dates set. I'll call
the Doctor's office on Tuesday to give them a day to open their
mail. ;-) Beloved husband is so supportive of me also is wants me to
be healthy and happy. Now its more REAL for me!!! YIPPEEEEE!!!!
The information I have gained this past few weeks have become very
valuable. Thanks for all the support so far. Big cyber hugs to all
of you <<<<HUGS
Linda from AL.
guess your not my terry then
shirley
terry bouchard <mzmufy@...
hi Shirley i am in Fall River , Ma. i had my surgery at St. annes hhospital and
i am female.
shirley weber wrote:terry where did you have you surgery?? i was wondering if it
was PB
though kaiser in fontana?? i went to class with a terry and he had
the same surgery date
shirley
I was told no Advil, no Aleve and no Aspirin products. Only Tylenol
for OTC meds. Other RX meds by MD okay if they do not contain the
following and primary care physician knows about the restrictions,
too. Janet
hi Shirley i am in Fall River , Ma. i had my surgery at St. annes hhospital and
i am female.
shirley weber <gmshirley@...
surgery?? i was wondering if it was PB
though kaiser in fontana?? i went to class with a terry and he had
the same surgery date
shirley
Maggie,
Congrats on your date!
Julia in Delaware
Lap RNY 3/10/04
261/178/120
Hi, I am so excited. I got approved on Thursday and have a date for
surgery on September 7th. I have a "doctor talk" scheduled for one
week before and the doctor's staff says the time is needed to get
all the testing done. My cardiologist already approved the
surgery. What else can I expect?
I have been reading all the posts here and am so glad I found the
Gastric Bypass Family. It has helped me so much get to this spot.
Thank you for your help in advance.
Maggie
what meds are we supposed to be avoiding??
Helena (papa11h@...)
terry where did you have you surgery?? i was wondering if it was PB
though kaiser in fontana?? i went to class with a terry and he had
the same surgery date
shirley
i went for an upper gi onthurs due to vomitting all the time. they found i
have gastric reflux and also have a positional blockage which means my pouch
isn't emptying like it should. i am on liquids and still have a hard time i
cannot get fluids and protein in. i had open rny on 6?17/04 i am going back to
work on mon and i am nervous . any input will help i see my surgeon 8/20 thanks
Terry
CY <collyyv@...
Thank you Barbara. That was a helpful post for many I'm sure. Glad
you seem to be feeling so positive and all went well for you. Keep
up the positiveness! It will carry you a long way!
Colleen
Lap-RNY 11/03/03
315/195/???
Louise, I am so sorry to hear about your mother. I was told but no
uncertain means that there were certain meds that I could not ever
have again. I am lucky to have a thorough surgeon's office. It is
terrible that your mother's problems got ignored or overlooked. Thank
you for re-inforcing that info. Hopefully, you are helping save
someone here from the same mistake. Janet
Thank you Barbara. That was a helpful post for many I'm sure. Glad
you seem to be feeling so positive and all went well for you. Keep
up the positiveness! It will carry you a long way!
Colleen
Lap-RNY 11/03/03
315/195/???
Glad to see you posting. We have been looking for you. Did you have
pain breathing before - I mean, does the doctor know that it hurts to
breathe? Glad you are here and posting again. Sorry you had a tougher
time, but it should go pretty smoothly now. Welcome back! Janet
Hi,
My name is Louise and I had a lap GB on march 26, 2001. My MOM
also had it done the same day. The doctors will tell you what
medications to avoid--but they really did not STRESS it to us how
important it was to avoid them at ALL COSTS. When you get that list
of Medications, MAKE SURE YOU DISTRIBUTE THEM TO ALL OFF YOUR OTHER
DOCTORS!!!!!! Because my mother's primary doctor prescribed her HIGH
doses of Motrin she developed an ulcer. Every one ignored her
symptoms, telling her she just needed to EAT because she was "too
thin"--what a joke--never thought we'd hear those words. The ulcer
actually grew so large that it ate through her stomach wall and began
to eat at an artery--she died on mat 21, 2004 from a severe GI bleed.
PLEASE, PLEASE Heed this information and make your other doctors
aware that we are "specail patients". Too many general Practioners
and interists do not know enough about our needs that there is
soooooooo much room for errors. I hope this information helps someone
else. Their ignorance can kill us. Good luck all and god bless and
take care of you--because you have to be your own health monitor.
Your body will tell you when something is wrong, DO NOT LET THEM
DISMISS YOU, the way they did my mom. By the way--my mother reached
her goal weigh the month before--never looked better and was 46 years
old. Please learn from our tragedy--make sure it does't become a
repeat performance in someone else's life. Thank you for listening,
Louise
Louise, Thanks for sharing this valuable information, I will keep it in my
files. I am so sorry for your loss..MIMI
libra783 <libra783@...
My name is Louise and I had a lap GB on march 26, 2001. My MOM
also had it done the same day. The doctors will tell you what
medications to avoid--but they really did not STRESS it to us how
important it was to avoid them at ALL COSTS. When you get that list
of Medications, MAKE SURE YOU DISTRIBUTE THEM TO ALL OFF YOUR OTHER
DOCTORS!!!!!! Because my mother's primary doctor prescribed her HIGH
doses of Motrin she developed an ulcer. Every one ignored her
symptoms, telling her she just needed to EAT because she was "too
thin"--what a joke--never thought we'd hear those words. The ulcer
actually grew so large that it ate through her stomach wall and began
to eat at an artery--she died on mat 21, 2004 from a severe GI bleed.
PLEASE, PLEASE Heed this information and make your other doctors
aware that we are "specail patients". Too many general Practioners
and interists do not know enough about our needs that there is
soooooooo much room for errors. I hope this information helps someone
else. Their ignorance can kill us. Good luck all and god bless and
take care of you--because you have to be your own health monitor.
Your body will tell you when something is wrong, DO NOT LET THEM
DISMISS YOU, the way they did my mom. By the way--my mother reached
her goal weigh the month before--never looked better and was 46 years
old. Please learn from our tragedy--make sure it does't become a
repeat performance in someone else's life. Thank you for listening,
Louise
Good Morning All,
I have been doing a lot of research on-line about WLS
and have an appointment set in September with a
surgeon to discuss it, but would like to find a couple
of books on the subject. Can anyone recommend a good
book(s) on the subject? Thanks for the info.
glo
Hi Gale,
Sorry to hear about your difficulties. But remember
these will be overcome and and you will be moving fast
toward your goal weight. You will be in my prayers.
glo
hi everyone......i had my surgery on july 19 and it was a little
tougher than expected. i had some breathing issues in the recovery
room and wasn't taken to a room until 8ish that night. everything
proceeded on plan from then on. i did well with walking and liquids
for the first few days, then on thurs night ( i was scheduled to go
home fri) i started running a temp. that no one could really figure
out, so the surgeon took me back off liquids and i basically had to
start all over again. i finally got to come home this tues. after
spending 8 days in the hospital. things are going ok, howver a
little slower than i had hoped. i am still on liquids and still
running fevers at night. my incision is draining daily and i have to
change the dressing at least twice a day sometimes more. my surgeon
isn't concerned about this, so i'm not really worried either. i see
him again on tues afternoon and i'm hoping that he'll move me to
soft/pureed foods then. i am also being treated for pneumonia. the
doc. didn't order an xray but because of my breathing issues and the
fact that i had to stay on oxygen for the 1st 4-5 days in the
hospital, he has me on antibiotic for now. although i'm not having
breathing problems now i do have some pain when i inhale so i'm
thinking pneumonia is a definite possibility.
well, that's what's up so far. kim, sorry to hear about the problems
you had, but am glad that all turned out well and that you are
feeling better. i'm a little down only because things aren't moving
as fast as i'd hoped, but i keep telling myself everyone is
different and it will get better for me.
gale
open rny july 19, 2004
Welcome to the group Margaret. I had my Lap RNY on 3/10/04 and did not have
any pain at all. Obviously having it laperscopically (sp?) it was less
invasive than an open surgery. I had my little intervenous pain meds and didn't
use
it but to get some sleep. Never for pain. Keep us updated on how you are
doing.
Julia in Delaware
Lap RNY 3/10/04
261/178/120
Star,
Glad it's not MS. I had a scope done pre-op and it was a piece of cake. Let
me know how it goes.
Julia in Delaware
Lap RNY 3/10/04
261/178/120
That's wonderful Alana! I wish you all the best, the time will just fly
by!
Carrie
Lap RNY April 9, 2004
348/277/140 (begin/current/goal)
www.carrieburns.net
Lap RNY/7/20/04
Beginning weight 249, surgery weight 231
I'm so glad I didn't have to stay in a hotel after surgery, since I
only live 1/2 hour away from the hospital.
I went in on Tuesday afternoon, had the surgery and was discharged
Thursday morning. They call that a 3 day stay.
The hospital supplied soap, lotion, toothbrush and toothpaste and fed
me completely clear liquid food. There was no shampoo, so you should
take that at least.
I took a robe, but couldn't use it because of the IV. The aides just
put a second nightgown on me, backwards so nothing showed. The
hospital supplied some socks with rubber on the bottom for the
walking and that worked well. I had to be up and walking within 8
hours and was. And they had me walk several times while I was in.
This is the only hospital I've been in for years, but it pretty well
supplies everything you need, even a comb.
All these surgery dates! It's so exciting. Congratulations
everyone. I'm so happy I did it and would do it again tomorrow. It
seems the pain is different for everyone. I hardly had any. One of
my co-workers cried in the hospital and at home for weeks. Exact
same operation. We're all different and have differenct pain
tolerance levels. A positive attitude helps immeasurably in my
opinion.
Had my first bout of diarrhea this morning and still haven't figured
out what caused it. Seems to be over now. I haven't experience
pain, vomiting, nausea and only diarrhea once, so my recovery has
been wonderful. Boullion is my new comfort food! Can't seem to do
without it.
Haven't weighed yet, but my clothes are really loose. My first post
op appointment is next Thursday and I can't wait to see that scale.
Good luck everyone--you will be so happy when you get home.
Hey everyone, just came by to say hello to everyone.. My surgery
finally has a date.. the beginning of my new life begins on
September 21st. Finally, the date is set.. I knew it was sometime in
Sept, but to actually know the day is sooo awesome. Now, its just
the waiting time. But to think of it, I've waited how many years for
this darn day to come, and now its less then 2 months away.. 53 days
away.. I seriously don't think I've ever been this happy.. I'm such
a sap, I started crying when Kay, the surgery schedule lady, told me
my date.. *haha*.. well, i'm off to swim.. talk to everyone soon..
All are in my prayers..
*Layna*
WOW! Congrats. Be sure to post asap after surgery so we all know how
your doing! We have the same date. I am trying not to think about so
i don't get too stressed before hand. But it's getting harder as it
gets closer. Good Luck.
Hey Margaret, I love Lake Wales. I will have to come up from Miami so
we can visit the local antique stores in your area. We can have
lunch, if I can eat (ever again HAA HAA ) I had discomfort more than
pain. Mine was a lap. The worst part was the gas pains, but knowing I
wasn't hurting myself was a relief. The gas pain was scary, but that
would come and go. That is sharp knife like pain under my left
breast. Once the nurse told me what it was, I was able to accept it
mentally and just hang on until it passed. The discomfort from the
surgery itself was tolerable. They gave me Demerol, and that made me
sleep. When they switched me to Lortab, it cut the discomfort and I
could stay awake, and when I went home I continued to use it for
almost a week. It made me feel better mentally - like a crutch- but I
could probably have done without it. Janet
I am so glad the docs found the problem. I hate the thought that you
have to wait out the weekend to get "fixed". Take it easy until then.
Since you aren't getting enough sustainence, be careful what you do.
Janet
==============
Hello,
I just have been approved for Wls after 2 1/2 yrs of fighten and I
am so happppppppppppppppppppppppppppppppyyyyyyyyyyyyyyyyyyyyyyyy.
And now I am trying to find a good support room where people do
support each other and dont fight all the time.
If anyone like to read my profile its at obestyhelp.com under
Margaret Smith Lake Wales FL
Can anyone tell me what to really expect when I have surgery.
Some people have said the pain is so bad and some say they didnt
have pain.
Well I;m a big baby when it comes to pain.
Margaret
35yrs old
265pds
5ft 2 1/2 inches
Hello
Thank you to everyone here for all their support and answers to my questions.
Tomorrow (Friday) morning at 7:45am I will be in surgery. I can't wait but I
am nervous anyway.
I hope to be home Saturday or Sunday so I will check in here and try to let
you know how it went if you like?
I have continued to lose on this pre-surgery program and I have now lost 24
pounds in the last two weeks.
Celeste
Hi Celeste,
You and your medical team will be in my prayers
tomorrow. Hope all goes smoothly and you're home
quickly.
glo
Atlanta's got one, it was great last year, raised the most money! If
you're in the area come on down to Piedmont Park that morning!
Carrie
Lap RNY April 9, 2004
348/277/140 (begin/current/goal)
www.carrieburns.net
hi there.. well thi doc said i have to get a endoscope
if i am saying that right.. my opening may have scare
tissue.. and what is going on with me is from a 449
pounds women that was probly getting 3,000 caleries a
day and now about 5oo a day has side effects.. since i
was so huge and had a big consution level.. so i donot
have M.S. lol thank gawd.. but i sure hurt alot.. can
barley drive or cruch my hair it hurts..
so i am goingot be schedualed a endescope next week
unless my vommitting gets worse before then.. and i
lost another pound and half.. i am 59 pounds down..
hurray.. my rings fit and clothes are way loose.. and
the pain and rash and vomitting should go away...star
Vicki,
Congratulations!!! I had to push and push for 3
months. I have my pre op in the 13th and i go in Aug
18th 8:30am.
So good luck to both of us !!!!
Patty S.
=====
Have a great day!
Patty Schroeder
YIPPIE!!!
I am so happy I called today the number I was given by the insurance
people from the treatment center. And I got my date . Aug. 17th..
Seems kinda unreal still. I guess it will really hit me when I go
for my pre-ops on the 10th. I am sooo happy!. I have only dealt
with this hop jumping and red tape for only 4 monthes. I feel very
sorry for everyone that has been fighting to have this surgery for
years. And I know there are alot out there.. I hope know one gives
up the fight.. I know it will be worth it.. Cause we are ALL worth
it..
I will post later when it is all over with.. But till then.. I'm
eatin. :)
Vicki
On September 18, 2004, the ASBS Foundation will hold the second
annual nationwide Walk From Obesity - a fundraising event designed to
reduce disability, death and discrimination of people who are obese
by educating the public and healthcare professionals about effective
treatments.
This nationwide non-competitive walking event will bring together
participants of all ages from throughout their communities. Walkers
raise money by asking friends, family and co-workers to sponsor them.
In addition to walker income, funds are raised through sponsorship,
matching gifts, corporate contributions and other fund-raising
activities.
The funds raised through this event will support the ASBS
Foundation's educational mission by:
Increasing research funding specifically for severe obesity
Improving obesity awareness and reducing its associated
discrimination
Increasing public education about this devastating disease
Increasing professional education concerning effective treatments of
the disease
The Walk From Obesity will raise funds in cities across the United
States. The organizational structure of this event will begin with
individual surgeons and their patient support groups working with the
Foundation's regional walk coordinators to tailor each walk to their
specific community. Groups interested in organizing a walk will
choose a volunteer walk event leader. It will be his or her
responsibility to recruit a pyramid of other volunteers. Each event
leader will receive a detailed information packet explaining how to
organize a successful Foundation Walk.
Already Committed A few of the many cities that will have walks:
Nashville, TN
Tulsa, OK
San Francisco, CA
San Diego, CA
Phoenix, AZ
Denver, CO
Miami, FL
Boston, MA
Richmond, VA
Tacoma, WA
with more to come! (see all cities)
The Walk From Obesity is fun and flexible. Each community walk can
adapt the program material to their own design, abilities and needs.
This walk is for everyone; participants can be young or old, active
or non-active, thin or obese.
For more information, please call toll free:
1-866-331-WALK (9255)
-- toll free number donated by XO Communications --
Corporate Sponsor Inquiries
Please direct all enquiries to:
Bryan Woodward, MPH, LCEP
National Chair
bryan@...
Any organization interested in organizing a walk event in 2004 should
contact (Event Leader application deadline May 1, 2004):
Jamie Carr, RN
National Vice Chair
jamie@...
For questions, suggestions or comments regarding this website, please
contact the Site Administrator.
Well, after spending the day at the dentist's he found that I have
been severely grinding my teeth, to a noticeable amount I guess. He
fitted me for a biteplate and since he is a great family friend he
also made it for me in less than 2 hours. He fitted the acrylic to
the front and the back he is doing on Monday. He wanted to give me a
Medrol pack, but when he called my surgeon he said that it was a
great risk for bleeding and my dentist understood. He still
prescribed me the Valium for the next few nights. I hope that work
will understand if I have the same kind of day tomorrow. This seems
like it has been one thing after another. My mom told me today that
that is true and that bad things come in threes. Well Migraines 1,
lock jaw 2, lets just skip the third and call it even! Thank you all
for your repsonses. I do have TMJ although it has never caused me
problems and is very very mild. I can only hope that tomorrow will
be better than today.
Bethany
281/261/222/150
I don't post much, but wanted to let people know that I'm home after my ordeal.
I don't regret doing it, but did give my DH a scare. I was scheduled for a lap,
and all went well till they were finishing, and I started bleeding. They had to
open me up and remove my spleen to stop the bleeding. Apparently the surgeon
nicked my spleen with a staple. I lost a couple units of blood. So when I woke
up instead of 6 small incisions, I have one 12 inch and 4 small incisions.
Happy days. Well you can live well enough with out a spleen. Then I couldn't
move to a full upright position with out the room spinning out of control, that
went on for 2 days, and I developed a partial atelectasis, (collapsed lung),
Finally after several units of blood, I was able to get moving pretty well by
the 3 day and made it home by the forth day. I figure that I have had it for
complications, so everything else should be down hill from here.
My "eating" is going fine. Mostly depend on protein drinks, went off pain meds
2 days ago-- they make me sick, and am managing on Tylenol. I'm looking forward
to progressing to soft diet, maybe next week, after I see the surgeon. I don't
particularly like the protein drinks, but I was getting really sick to my
stomach, and not wanting to eat. When I talked to my daughter she said "well
mom, you need protein!" My years of nagging her paid off, but don't you just
hate it when they're right! I do feel better every day, and can't wait till the
next stage, but I guess when the MD's read us the complications they do it for a
reason.
Hi,
My name is Diane new to the site. But after my surgery I had a hard
time finding a protien drink that works for me. I am drinking Carb
Solutions it has 23grams of protien and about 100 - 110 calories and
one gram of sugar and it works very well for me. I tried almost
everything. I buy the premix. it been nine months since my surgery
and I have lost 92lbs. I have not had many issues. Hope this helps.
No I don't have a date yet. The insurance company just mailed out my
approval letter today and as soon as the doctor's office gets it,
they will schedule it. I do know that I am having lap.
Carolyn
WOOOOHOOOOO!!! I know how you feel and that is an awesome feeling!!! Enjoy
this moment. And keep us updated on your date. I hope that you are able to get
right in and move on to the life God wants you to live. Congrats!!
Dora in Tennessee
Lap/Open RNY 9/20/2004
Vanderbilt Hospital
451/445.6/150
Hi GBF!
I'm new here and I just wanted to share my good news. I was approved
today for surgery!! I've enjoyed reading all of your stories and
support. You are all an inspiration to me and all other pre-ops. Your
positive attitude will get you far in the world!
Carolyn
Pre-op, Dr. Galloway
Mobile, AL
They kinda left it up to me, wanted me to wait at least a week I
believe and then just not do anything too strenuous. I'm not sure about
the ovary being removed though, that could change some of it. Don't be
embarrassed Kim your doctor wants you to ask him!
Carrie
Lap RNY April 9, 2004
348/277/140 (begin/current/goal)
www.carrieburns.net
For those of you who had open rny, how lond did your doctors say to
wait before having sex again? I am a 33 year old woman who has been
married since I was 19 years old, but was still to embarrassed to ask
my male doctor. And does the fact that he took out an ovary have any
thing to do about it? Hope this question hasn't offended anyone.
Kim
I have seen fuzzynavel on vitalady. You may want to
email them if you can't find it on the site, which I
do find hard to manuever through. I like to choose my
protein drinks based on calorie intake as well and she
doesn't list that with the product and I don't like
that and I have to do a lot of research on my choices.
Hi Bethany,
It's interesting that there are several of us with both these issues.
I've had migraines since I was a child. You didn't mention if you are
a chronic migraine sufferer or not.
I woke up from my surgery with a migraine. It worsened with each
post-op day. I was doing so well surgically, that had it not been for
the migraine, I would have been able to go home sooner. As it was, I
was lucky to get out after 4 days, it got so severe.
The migraines continued for at least two weeks after the surgery. I
don't know if it was the anesthesia, the morphine pump, the shock to
my body from the surgery, or a combination. But whatever the cause, I
got locked into a cycle and couldn't get it to stop.
After forcing myself to go through the minor ones using only
symptomatic relief (dark, quiet, ice packs, hot showers, etc) I was
finally able to break through.
I take Imitrex for my migraines. It is, fortunately, a small enough
pill that I am still able to take it by mouth. But this isn't a
medication they just hand out a prescription for. You have to have it
the first time in the presence of a physician in case you're one of
the few who have a cardiac effect from it.
As for the jaw problem, the surgery itself would most definitely cause
it. The anesthesiologist has to open your mouth quite far to intubate
you during the surgery.
Even if it is TMJ, another chronic condition, the effects come and go.
You should be able to eat still.
Debi
You may want to ask her if the protein breaks down
after an hour. I have read it several different
places that you should drink your protein within the
first hour and it may be something she needs to
research. Or maybe the sites I've learned it from is
wrong. Who knows?
Hi Amy
I live in the Washington DC area and it is in all the
grocery stores. I have seen it at Giant, Safeway,
Super Fresh, Shoppers. It is usually with the bottled
water by the gatorade. My son is on the swim team at
his high school and I would buy it for my him for the
swim meets. I think I've seen it at Target and
Walmart as well. Hope that helps.
glo
From my files
Another interesting post from my files on aloe vera.
Allied Pharmacy offers the same aloe vera Dr. Ivan Danof used in all of his
studies.
Hello again,
I have no idea if I am doing this right or not...I'm not very high
tech so if in the event that I am not corresponding correctly please
advise me on how to communicate with the group and please accept my
apology if I bombarded everyone's email. With that being said I
would like to thank those of you who responded to my questions so
quickly.
Josie, I live in a small town near Lake Charles, La. May I ask you
how long did you have to do the IV therepy before going to the oral
antibiotic? Did you recieve only one IV treatment a day? I truly
believe that my doctor will do whatever she can to help me but she is
asking me quite a few questions that I cannot yet answer. I really do
appreciate all who have participated in organizing this group. I
feel like it is a God-send.
Eva, what was the dosage for the Bioxin?
Also, I have read that there are tests that can identify specific
mycoplasmas within the body? Should one be tested for these or just
begin the therepy?
One more question, for anyone who did begin their treat with IV
therepy, did your insurance company give you any hassle over it?
Thanks again for your help, Leah
Hi, Everyone!
I just had to share my excitement with folks who could appreciate it!
Today, I actually used my left leg to go up several stairs!! I haven't been
able to do that since the last time I used a prednisone dose pack about a
year ago. Ordinarily, my left knee is so swollen and weak, I am unable to
go up or down stairs unless my right leg does all of the work. I've been
walking sideways up and down stairs for close to four years because of this
knee! Praise the Lord for a great doc and a great medicine!
Blessings!
Terri
Hi,
My name is Leah and I have had RA for almost 30 years. I have just
recently heard of the antibotic therepy.
My family doctor is willing to treat me but admits although this
makes sense to her she has never used the AP so we will be learning
together. I would like to ask some questions to those who have
already started your therepy.
1. We suspect strep is invovled but here is my dilemma...I've been
on Humira since January of this year and have progressively gotten
worse. I have been on 2 rounds of antibiotics this past month for a
sore throat and cough that just won't go away. My doctor is going
to do 2 specialized test for strep (ANO and another test that has 3
initials and ends with -ase). How long should I wait to take these
test so that the antibiotics will be out of my system? My doc says
to wait 7 days but we are not really sure that this is long enough.
Any advise?
2. Everything that I've read about this protocol says that the
patient should be hospitalized for 5 days to 3 weeks for IV therepy.
Couple of questions here. First of all is it necessary? Could one
have a port put in and have the IVs administered at the Dr.'s office?
The second part of this question is can the antibiotic to kill the
strep be given at the same time as the IV therepy or should we treat
the strep first and then proceed with the IV treatment?
3. I am currently taking 20mg of Prednisone a day. Is it true that
I can only have 5mg a day while on this treatment? I really want to
get off the Prednisone altogether but I cannot imagine how I will
survive without it...coping with the pain from the inflamation. I
hate to sound like a baby but is there anything that I can take (meds
or alternative) to help with the pain until the AP starts working on
me?
4. How will the doctor know when to start decreasing the other meds?
5. Finally, the last bit of information that I need some help with
is this: I have a rheumatologist and he has NEVER said anything
about treating RA with antibiotics. I had to call him this morning
and ask him to refill my Prednisone and to call me out something for
pain (This is the first time I've asked for pain meds in 30 years).
I also told him that my family doctor was going to treat me with the
AP. I was expecting a fight but instead he called me out a
prescription for (excuse my spelling) doxycycline, 100mg per day, 7
days a week. Okay, I'm soooo new to all of this but everything that
I've read suggests treating strep (I lived with it nearly my entire
childhood) and to use the Minocin 2xs a day on Monday, Wednesday, and
Friday? Any advice here? I'm wondering if I should just use my
family doctor who is willing to follow the protocol.
I thank you all for you time and any advise that you can give or
personal experiences that you can share.
Good health to all,
Leah
Cystitis is inflammation of the bladder usually caused by a bacterial infection,
a UTI.
Interstitial cystitis (IC) is inflammation of the tissue of the bladder wall.
When the vet thought my cat might have IC, she told me to give him Glucosamine.
I did for a number of months and he has been fine since.
HTH
Denise
Hello;
New to the group. Was on AP for a few years, Doxy, for Sjogren/lupus.
Have been under care of naturo-pathic physician and stopped AP.
Using naturo-pathic remedies (ex: rhodiola for adrenal exhaustion) and
diet control. Have had to be on prednisone for flares, but weaned off
of that now. Under much stress; left domestic violence situation but
still have issues to deal with in that regard.
Had a bladder infection one month ago, and again last Thursday. On MD
visit, she told me that the culture on last infection didn't grow out
much of anything, although it responded to Bactrim. She is thinking a
cystitis and is referring me to urologist. Did some internet
searching as I suspect Sjogren/lupus might be in this, and it appears
that it could be, one site says that methotrexate is used in this. I
have resisted the use of MTX from the start in my therapy, and wonder
about returning to AP for this? Anyone had any challenges with
interstitial cystitis, autoimmune-related, and any help from AP with
this? Can anyone recommend an AP doc in the Seattle area for me?
Thanks...Linda
bone is a huge raised lump, feels soft, but it is about four inches long and
about an inch and 1/2 across. When I visited my Rheumatologist in May, he
looked at it for one minute, touched it, and told me that it was fluid filled
and
was not disease related. But here it is, weeks later, and it is still there.
Sometimes larger or more pronounced than
other times, but none the less still there, and only on the one side.
Anyone have any ideas?<<<
Hi Gail....just some possible things to consider from a fellow APer....
A while back, I was reading up on the adrenals. Apparently one of the
symptoms of adrenal imbalance can be the deposit of fatty tissue around the
collar
bone. To rule it out, you could have your adrenals checked.
Another possibility, though your lumpy bit seems a bit bigger than
this...thyroid...possibly nodules/goiter? Have you had your thyroid examined
with
bloodwork recently?
Benign fatty lumps - lipomas - can pretty much come up anywhere on the body,
but it's always worth getting them double-checked by your GP.
The larger question here is are these things truly herxes or just
coincidental adjuncts? My own personal feeling is that these pathogens can
pretty much
invade anywhere in the body and, similar to the nodules people get with RA, it's
quite possible that the pathogens would encapsulate themselves in little
pockets in any place within the body to protect themselves....or the body
encapsulates 'them' in an effort to inhibit their spread? In any case, it's
worth
getting your lump checked out further, if only for your own peace of mind.
All the best!
Peace, Maz
Lyme/RA
Hi Eva,
Glad you found the probiotics good... i will be taking them regularly
now too.
best,
Leonie
Thanks Soheila, I'll remember that. I thought that the PPIs wiped
out the stomach acid all day long, but obviously there is still some
there. I was a bit worried cos i was wondering how i could digest
any food.
best,
Leonie
Hi Ros,
I was unaware that one could take the PPIs in conjunction with NSAIDs.
Otherwise i might have started sooner and wouldn't have got an ulcer.
It's good to know i can take minocin with nexium as i want to start on
it right away. Thanks for your advice, i appreciate it.
Leonie
I am reading a lot about the possibility that MSM can reduce pain in RA and
Scleroderma. I recently bought Glutamine Powder, and believed that that was an
anti-inflamatory and could help me also.. I have Raynauds, Diffuse Systemic
Scleroderma and Sjogrens. Do both MSM and Glutamine give us some benefit, or
is it just the MSM. Would appreciate any input on this.
Thanks Gail
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Hi Everyone, my name is David. I was diagnosed with Dermatomyositis about 4
years ago.
After having gotten to the point of not being able to get out of bed without
help twice, I had
been doing okay for about a year and half. The first round was IVIG with
prednisone, that
didn't last very long however, the next round was methotrexate with
cyclosporine, and I
thought that was the winner. I am starting to go back down however, so I know I
am in fact
not better. I came accross the Fairy Lady's story, and was inspired. I am very
enthusiastic to
start on antibiotics, but read that you needed to be off methotrexate for 6
weeks. I was
wondering if anyone has taken antibiotics at the same time as methotrexate, or
if I should
wait until I'm off methotrexate again. I wish I would have started this 5
months ago, when
my doctor took me off methotrexate. If anyone can help, I would greatly
appreciate it.
Thanks,
David
Hello group,
I finally decided to start on the AP, and now i have an ulcer (or something) due
to long term Celebrex usage. The doc wants me to take Nexium, a stomach acid
inhibitor (PPI) which i'll probably have to start on tonight since my stomach is
burning.
Does anyone know if the Minocin and Nexium can be taken together ? It seems to
me that it will create a very unfavourable environment in my body, since the
Nexium kills stomach acid causing bugs to multiply. This is on top of the
antibiotics killing all the intestinal flora also. I feel like i've run out of
options in life. My knees are badly swollen and it's hard to get around. I'm
going to ask for a cortisone injection tomorrow, since the Celebrex is eating
away at my insides.
thanks to you all ...
~Leonie
leoniecent@...
02 62556202
Hi Gang,
I have been wearing thong sandals and other sandals and have developed pain
in the metatarsal area. It was so bad I could not put weight on the foot
unless I walked on the outside and that is bad for me since I walk 30
minutes a day. I just did not want to see a foot specialist and could not
figure out what my problem was. I also tried the metatarsal things you put
in your shoes with no difference, Two years ago I broke 2 small bones inthat
area and I remembered they did not think a cast in that area would work so
they had me in a boot that I hated. They also suggested I tape the area.
My whole reason for this note is that anybody with metatarsal problems could
use a wide tape and wrap it around the area for more support especially if
you want to wear sandals and dress shoes. So I did this and have not had a
problem.
Hope this helps somebody..
Cooky
AP10 yrs
Hello
I have SD suffering from poor circulation speially in
my hands fingers. I have attack of Raynauds at cold
weather.
I have redness (inflammation) around some of my
fingers nails.It seems there is infection too.I have
never had any infection on my hands or under nails. I
guess it is related to poor circulation. Does any body
knows of a herb or anything to improve my circulation
and treat the inflammation on my finger tips?
I am taking Diltiazem too which supposed to increase
the circulation.
I do appreciate your comments.
thank you
soheila
Hello,
I am a second time poster. I have been quiet reading all the advice given and
want to thank everyone who is offering me hope. I had never heard of AP but am
interested. I have ankylosing spondylitis, as did my dad. I was told this is a
genetic illness and don't understand how a microbe caused illness could have
genetic tendencies. Can anyone help me understand this?
I had made the decision several years ago to stop all the toxic meds recommended
by my specialist. I fought taking the immunosuppresive drugs for years but
eventually, with hope on the horizon, I tried methotrexate after trying all
other meds recommended: being a nurse I understood the side effects. I followed
all the suggested protocols and did find some relief, but my SED rates were
still off the charts, never coming down. I then got sick with a simple
infection while on methotrexate and nearly died, took me a year to recover. I
was raising a young son and had a sick husband and was terrified. I said never
again. I've had to give up my career as a nurse and have somewhat withdrawn from
anything but a simple life. I am careful with diet, do warm water range of
motion, try to avoid stress and it has helped tremendously. But, I have to
admit, I got burned out following such a strict routine and became depressed and
seem to feel hopeless. I have a
referral to another specialist that I am going to see if he will approach my
treatment with the AP.
I had mentioned to my Dr. for years that when I am on antibiotics for what ever
infection my arthritis seems to improve. She said that's simply because they
have immunosupressive qualities (didn't understand that). Is that true?
Thank you all for your encouraging information and all the time you've willing
to share.
Deb
Hi All,
Thought I'd read something about this in The New Arthritis Breakthrough, by
Henry Scammell and checked it out. If you have the book, check out pg 280 in
the section entitled: "Minocycline and the NIH Clinical Trials." Here's the
relevant bit where there is a discussion on what provided the rationale for the
further study of minocycline in the MIRA Trials:
"Minocycline may help patients with rheumatoid arthritis because it
eliminates and infectious agent. Alternatively, arthritis research in animal
systems
has shown the minocycline affects calcium metabolism or pathways in T Cells;and
calcium pathways are a critical component of the ways in which T Cells
activate themselves or function. T Cells exposed to minocycline take up too much
calcium internally, and then become sick or malfunctional. They seem to quiet
down, and the animals go into complete remission or are at least visibly
improved
by the therapy. This new information favors the possibility that some
antibiotic drugs may be benefiial in rheumatoid arthritis because they eliminate
these
T Cell autoimmune responses, and not just because they home in on an
infectious agent."
So, according to these animal studies that were part of the fuel behind the
MIRA studies, in addition to being used in the war waged against mycoplasma,
apparently minocycline may also have some effect as an immune modulator, while
also tuning down inflammation. I guess unless actual human studies are
performed, all the wonderful properties of our miracle minocycline won't be
known for
sure?
Peace, Maz
For your info, I had serious staining of teeth and dark blue bruise-like spots
on my legs after taking minocycline for a year or so. I kept on it for 2-3
years, but the staining and bruising only got worse, even though I was taking
daily doses of Vitamin C which sometimes helps. My doctor switched me to
doxycyline because of that, but I have not done as well on it with the RA, and I
would have to eat when I took the doxy or I would vomit. After going off
minocycline, the bruised appearance on my legs gradually faded, but the staining
of teeth has never gone away.
Judy Henry
Hello Group,
Could anyone advise if you have suffered with the following after long term
use of minocycline?
1. Staining of teeth?
2. Any pulmonary complications
3. A 2003 study in Switzerland found that continual use of tetracyclines
could lead to "pulmonary lupus & hypersensitivity pneumonitis"
4. Continual use "may well include possible contraction of Sweets Syndrome"
* If you have suffered from any of the above could you please advise how
long you were taking the minocycline before symptoms appeared?
* Do these symptoms disappear when you stop the minocycline?
* Has your RA improved?, for taking the minocycline?
Any help here would be great.
Thank you
Angela
Hi all,
I have been on AP for about 7 years and am looking to change up my
regimen. I know some folks have added Alinia. I am currently on
Minocin and clindamyacin. I herxed when I did flagyl, but found it
pretty rough on my system. Is thre anything else you guys are using?
Thanks,
PBandj
Thanks Ethel, somehow the name of the website with all the info escaped me.
Hi Monique,
Is it a relatively isolated incident of reflux/esophagus damage, possibly due to
the
medications not getting and staying down?
Have you been tested for an H. pylori infection?
Michelle
hi Ethel,
thanks for all the info ... would you suggest undertaking the cleanses at home
by myself, or going to a doctor/naturopath who can supervise the whole thing ?
Should I do it prior to taking the antibiotics, or does it matter if i do it
during ? There doesn't seem to be any doctors around here who take an interest
in gut health, and my AP doc certainly didn't suggest it. It's just that it
would be so much easier to do these things with a bit of guidance. Scammell's
book doesn't even talk about gut health very much, unless i missed something.
best,
~Leonie
Hi Angela,
Is it all right if I give Angela Tuffy your details ? She lives about 45
minutes away from you, and I think she might need your services by the sounds of
it. She sent in a post on the list today.
best,
~Leonie
leoniecent@...
02 62556202
Hi Angela,
Why don't you get in contact with Angela Doolan who is only a short drive away
from where you live ? She is a qualified herbalist and has a patient who is on
antibiotics for RA also. Angela is knowledgeable on this therapy and can guide
you in many areas. You're lucky to live so close to her and get her help.
I offered to loan you the Scammell book some time ago, and also help with any
computer issues your having re joining this group so you can post and receive
messages. There's not much point in making it hit and miss if you need support.
I can still help.
~Leonie
leoniecent@...