New member introduction

Report post · December 8, 2003

,

I just want to tell you that my first symptom of Reiter's (ReA) was a

swollen (sausage digit) big toe on my right foot. It felt like I had stubbed it

on something, although I didn't recall that happening. My family doctor had it

x-rayed three times and didn't have a clue. It was when the other toes on that

foot got involved that he asked a Rheumatologist to figure it out. Other

people on this list had it begin that way. So, as they say, join the club!

You're

not alone. Harv RS/24 yrs. I'm 48

Report post · December 9, 2003

I have reached my tolerance for the

pain now, and I am going to call the rheumy tomorrow instead of

waiting for my next appointment in Feb.

I am glad you are going to call. Do let us know what the Rheumy does for

you. I hope you get something to help with the symptoms and the pain.

Thank you for sharing your introduction. As you can see, you are not alone

in your illness.

I do hope that you can continue on with a mild case and not endure the

disabling pain some have.

Adrienne was told... because she was diagnosed early and being treated...

that so long as she stayed active, she should be ok. I hope it is the same for

you.

K

Adrienne's Mom

Report post · December 10, 2003

,

Your history doesn't sound that mild to me. A lot of us tend to minimize

what we go through.

I took Levaquin for a sinus infection a couple years ago and it made me

vomit and hallucinate (no, I don't normally hallucinate). I have a sinus

infection now and am taking Avelox. I have taken Avelox for every sinus

infection the past couple years, and it's a great medication for me. I will

never take Levaquin again. The doctor says that for me, the side effects

are worse than the disease. When I had such severe problems from Levaquin,

I found a message board with hundreds or maybe even thousands of people

posting about how Levaquin ruined their life. I'm sorry, I don't remember

the website. Maybe do a google search.

I have had reactive arthritis for 30 years and my back X-rays have always

been normal. Good luck and please keep posting.

Janet in SF

Report post · December 12, 2003

I read your mail.

Are you saying that R. A. can effect your sines?

Sandy

Report post · December 19, 2003

Hello again.

I want to thank all of you for the warm welcome and also thanks to those who

answered my question about pain without swelling.

I saw my rheumy on Tuesday and told him I was having lots of pain in my hands,

feet, left knee and left elbow. I have also been very fatigued. He dx'd FMS.

I asked if this was in addition to the ReA, and he said maybe I never had that,

maybe it's been FMS ever since I started having trouble in 2001. I pointed out

that I had the classic triad of symptoms in 1980 and that my last rheumy thought

this was a recurrence of ReA arthritis. He said he sees no " sign " of the

arthritis. I assume this means he sees no swelling, because I sure do have pain

in my joints. I tried to tell him that I KNOW how I feel, and that I am sure

that there is currently a flare in those joints that I had not been experiencing

prior to about 6 weeks ago. The last time he checked my SED rate (August), it

was 13, very normal. I asked him to check it again. He ordered the test as if

he were humoring me, saying he saw nothing to indicate any inflammatory process

at this time. He gave me amitriptyline to try to help me rest better and also

gave me Ultram for pain. I did not get that one filled because the pharmacist

told me there was a possible interaction with the Effexor that I take (shouldn't

the dr. have known that?). Anyway, the pharmacist was going to call the rheumy

about that, and I haven't heard back.

I did hear from the rheumy's nurse today, though. She said my SED rate was 67,

and the dr. wants me to come back. Please, please give me the strength not to

do a big raspberry at him and shout " I told you so!! " I think this dr. is

pretty knowledgeable about auto-immune diseases, and I live in a fairly small

city with only a few choices. This guy is really arrogant, though. My old

rheumy treated me with respect and valued my input, and I was really taken aback

when I first met this new guy. On my first visit to him (because I had moved

and my old rheumy was 150 miles away), I filled out the usual medical history

pages. For " Current Condition, " I wrote " seronegative spondyloarthropathy -

possibly Reiter's. " Alone in the examining room with the new rheumy, he read

what I had written. He looked up at me when he got to " Current Condition " and

said " Did your old doctor write this for you? " I gaped at him in disbelief.

" Do you SEE him here? " I asked. He had the good grace to look pretty sheepish

at his stupid question. Now it seems he goes out of his way to let me know that

he acknowledges that I DO have a brain. It was really funny when he gave me the

amitriptyline - he said that it might give me a " hangover " and I shouldn't try

it for the first time on the night before a big deposition or something. Well,

I haven't taken a deposition for years, since back when I was in private

practice, but I guess he just wanted me to know that he remembered that I am an

attorney. (I don't know what this means in his mind - that if I were a blue

collar worker, it would be OK for him to treat me as if I were stupid??) He's

kind of a goof, I think!

I haven't had the time to check this out, but my recollection is that SED rate

is normally not elevated with FMS. Does anyone know? Would there be any way to

tell for sure if what I have is ReA or FMS?

Thanks again. This is a great group. You are so supportive and so

knowledgeable - I am glad to have found you.

Report post · December 22, 2003

,

I have the same experience with doctors being startled at my mastery of

medical terminology. They always ask me what I do for a living. It is very

patronizing.

In a way, it's good your sed. rate is elevated because now they'll take you

seriously.

FMS normally would not cause an elevated sed. rate. It probably is the ReA.

The doc. may be forced to admit you have it now. I hope he's not nasty to

you, since you were right and he was wrong. Doctor ego management is a

full-time occupation.

God Bless,

Janet in SF

ReA since 1973; diagnosed 1997; HLA-B27+

Report post · March 7, 2004

Hi

I'd suggest downloadin a book called The Key To Health and

Rejuvenation by s Moritz. You can do that here...

http://ener-chi.com/books.htm

There are a lot of us on this list that have benefited from his

advice. I've had candida for God only knows how long. I've been

sesarching for the answer for over a decade, and this is the only

thing that has worked for me. I've done the

supplement...antifungal....probiotic...msm...prebiotic...etc thing,

and got some relief, but didn't show any progress towards getting

better at all. Some of the things I took even made me sicker.

Candida is a symptom of a bigger problem. Your body is telling you

that something is wrong and you need to fix it.

If you get rid of the food that the candida and other parasites feed

of off the parasites will leave on their own, and the candida will

shrink back to where they belong. It's working for me.

Brain fog is a symptom of a congested liver.

Read some of the past posts on here about s, liver flushing,

and colon cleansing.

I would strongly suggest getting s' book. It's $6.95 for the

electronic version, and you get it right away. You can also read

posts from others in his " Ask s " forum on www.curezone.com

Rick

> hi,

>

> i'm new to the list... i went to a medical intuitive who told me i

had yeast

> / fungal / parasite problems (particularly prominent in my lungs,

he said),

> which lead me to do some reserch online. i came across some sites

about

> Candidiasis, and it is very clear to me that this has got to be the

source

> of the many problems i've had for so long (5-10 years)....

>

> i have many of the typically listed symptoms, but these are the

most severe

> problems i have, in order of severity:

>

> - postnasal drip

> - heartburn

> - sore throat

> - recurring depression

> - " fogged in " feeling

>

> so i've decided to start off with " Candida Diet No. 2--Moderate " :

>

> http://www.candidapage.com/candiet.txt

>

> but i'm already a bit overwhelmed when i read this FAQ page:

>

http://web.archive.org/web/20030409195254/http://www.infosky.net/~alex

mi/caF

> AQ.htm

>

> ... wondering if " Candida Diet No. 2--Moderate " is enough in

itself, or

> should i be supplementing it with specific treatments from the FAQ.

>

> any advise on where to start would be greatly appreciated!

>

> thanks

>

> jason

Report post · March 8, 2004

Hi , Reiki,

> Candida is a symptom of a bigger problem. Your body is telling you

> that something is wrong and you need to fix it.

>

> If you get rid of the food that the candida and other parasites feed

> of off the parasites will leave on their own, and the candida will

> shrink back to where they belong. It's working for me.

>

> Brain fog is a symptom of a congested liver.

>

It's true that candida is an opportunist that comes AFTER dysbiosis

in the bowel has set in. Food elimination does not address the fact

that modern diets do not contain enough prebiotic to allow the

natural beneficial organisms in the gut to control the candida and

yeasts. We're looking at an epidemic that results from modern dietary

practices that both poison the system and reduce the controls.

I agree with liver flushing to reduce toxin load and improve function

(and brain fog), but you still have to control the biggest source of

toxin load, which is the incorrect bowel bacteria. This will

alleviate the load on the liver.

And because people don't eat enough glutathione precursors in their

foods, and because glutathione IS the main liver support, there's

little wonder the liver is impaired and toxin loads on the rise.

regards,

Duncan Crow

Report post · March 8, 2004

There are all kinds of opportunists out there...AND HOW!

> Hi , Reiki,

>

> > Candida is a symptom of a bigger problem. Your body is telling you

> > that something is wrong and you need to fix it.

> >

> > If you get rid of the food that the candida and other parasites

feed

> > of off the parasites will leave on their own, and the candida will

> > shrink back to where they belong. It's working for me.

> >

> > Brain fog is a symptom of a congested liver.

> >

>

> It's true that candida is an opportunist that comes AFTER dysbiosis

> in the bowel has set in. Food elimination does not address the fact

> that modern diets do not contain enough prebiotic to allow the

> natural beneficial organisms in the gut to control the candida and

> yeasts. We're looking at an epidemic that results from modern

dietary

> practices that both poison the system and reduce the controls.

>

> I agree with liver flushing to reduce toxin load and improve

function

> (and brain fog), but you still have to control the biggest source

of

> toxin load, which is the incorrect bowel bacteria. This will

> alleviate the load on the liver.

>

> And because people don't eat enough glutathione precursors in their

> foods, and because glutathione IS the main liver support, there's

> little wonder the liver is impaired and toxin loads on the rise.

>

> regards,

>

> Duncan Crow

Report post · March 9, 2004

> Hi , Reiki,

>

> > Candida is a symptom of a bigger problem. Your body is telling you

> > that something is wrong and you need to fix it.

> >

> > If you get rid of the food that the candida and other parasites

feed

> > of off the parasites will leave on their own, and the candida will

> > shrink back to where they belong. It's working for me.

> >

> > Brain fog is a symptom of a congested liver.

> >

>

> It's true that candida is an opportunist that comes AFTER dysbiosis

> in the bowel has set in. Food elimination does not address the fact

> that modern diets do not contain enough prebiotic to allow the

> natural beneficial organisms in the gut to control the candida and

> yeasts. We're looking at an epidemic that results from modern

dietary

> practices that both poison the system and reduce the controls.

>

> I agree with liver flushing to reduce toxin load and improve

function

> (and brain fog), but you still have to control the biggest source

of

> toxin load, which is the incorrect bowel bacteria. This will

> alleviate the load on the liver.

>

> And because people don't eat enough glutathione precursors in their

> foods, and because glutathione IS the main liver support, there's

> little wonder the liver is impaired and toxin loads on the rise.

>

> regards,

>

> Duncan Crow

A man that I respect very higher once wrote... " The only way to

understand with our heart is to have the experience. "

I've had this for a long time, and cleaning up my body with flushes,

and cleanses is the answer for me. It's also been the answer for many

others. What makes more sense, helping your body to work the way that

God intended, or to feed it altered substances.

I no longer need to look for help in this group, I have my answers. I

only come here to give back what was given to me, not to sell things.

Rick

Report post · July 27, 2004

Hi Debs.

This is a AWESOME group. Ask anything and someone will get you a answer

soon. I know that if it wasnt for this group I dont think i could have dealt

with

this as I have. My daughter is 17. I know what you mean about giving these

kids down time. I do that with my daughter.

Welcome Aboard

Robbin

Report post · July 27, 2004

Welcome Debs!

I just wanted to welcome you to this wonderful list, I don't post

here very often, but daily I read here and I learn so much and just

feel comfort in knowing that there are others who are dealing with

similar issues as I am with their children. I hope you find more

answers for Andy soon, it sounds like you are on the right track. As

I am sure others here will tell you, diagnosing JRA is so tricky, and

is completely a long process of illimination, so many of the symptoms

of JRA mimic many other illnesses, so it is important to rule out

every possibility, including leukemia. My son is 9 yrs old, he was

diagnosed with systemic JRA last summer, but he began having problems

when he was 5, and even before then, he always had unexplained fevers

and rashes. He is doing very well now taking naproxen only, but this

illness is a one day at a time type of illness. Again, I sure hope

you get a definate answer soon and can get some relief for Andy, and

please keep us updated!!

Jodi, Bronson, systemic, age 9

Report post · July 27, 2004

Thanks for allowing me to join this group. Our five year old has systemic

onset JRA. She is taking 5 tabs of methotrexate per week. It has helped but

she is stilling experiencing swelling in wrist and stiffness in her legs in the

morning. Will the medication eventually stop all the symptoms? I know our

doctor said we might need to go up on the methotrexate. Sandi

Report post · July 28, 2004

Hi Sandi,

There is no guarnatee that 12.5 mg MTX will stop all your childs symptoms so

increasing the dose is likely.My son was maxed out on 25mg at 3 and he was

still steroid dependent.

Welcome to the list.

Becki and 6systemic

Report post · July 28, 2004

Sandi, Welcome to the group. I can't answer your question, for it sounds

like we are in the same boat as you. n has been on mtx for 6 weeks

with no relief to her wrists and knee. She goes back to the rheumy the

first week of August to see if we should move up and on, or whatever.

(n,15, systemic)

Re: new member introduction

> Thanks for allowing me to join this group. Our five year old has systemic

> onset JRA. She is taking 5 tabs of methotrexate per week. It has helped

but

> she is stilling experiencing swelling in wrist and stiffness in her legs

in the

> morning. Will the medication eventually stop all the symptoms? I know

our

> doctor said we might need to go up on the methotrexate. Sandi

>

Report post · February 1, 2005

Hi Kathy

Welcome abord

Sorry to hear about you dx it is a bummer

I also have PBC and AIH

here is a great support group for PBC

http://pbcers.org/

My best advice is to keep informed

it is not so scarry when you know.

Hugs

in Montrealpersimmontree@... wrote:

Hi Everyone!

I was diagnosed January 14 with primary biliary cirrhosis and auto-immune hepatitis, and also have iron-deficient anemia. The diagnosis was somewhat of a surprise I had no familiarity with liver disease and I don't yet know where I am on the prognosis spectrum.

I have been trying to play catch up in terms of education. Thank you so much for the website and this wonderful daily digest! It is a source of info and real comfort to those of us who are new to all this. Congratulations to all of you on your courage, tenacity, knowledge and good cheer. My healing thoughts are with each of you.

I am taking 3x 250 Urso and some Atarax (itching med) for PBC, and will start steroids and possible another med for AIH in a few weeks. This Christmas I had iron transfusions for the anemia, which was before the diagnosis. They did a liver biopsy, and the hepatologist who is at town Univeristy Hospital in Washington DC, thinks I am mid-way through PBC, but he didn't assign a stage. They will retest the blood Feb 14 to see if the Urso had en effect and I have been told to get a second opinion at s Hopkins. The PBC med lessened several of the symptoms, but I am still exhausted, have sore muscles and joints, and a swollen abdomen. No thoughts of returning to work yet, but this weekend I did walk to the grocery store for the first time since Nov. I contacted local support groups who are really wonderful.

Are they any other overlap cases of AIH/PBC out there? Do you have any advice for newcomers? Any suggestions for specialists in the DC/Balt area? Does anyone know if there is a higher incidence of liver cancer among PBC/AIH patients? I would be interested in hearing from you.

Blessings to all of you.

Kathy in DC area

Report post · February 1, 2005

Kathy in DC area

Welcome to the group. Although my diagnosis is NAFLD (NonAlcoholic Fatty Liver Disease) with cirrhosis, and a handful of other problems like diabetes, arthirritis, acid stomach, I too had a serious bout with iron-deficient anemia 2x last year. After 2 sets of colonocsopy/endoscopy exam and related removal of some bleeding verocies, my GI seems to have done the trick this last time as I am doing quite well and my Iron is low normal, but ( hopefully) improving every day.

How did the doctors explain your anemia being part of your diagnostic mixture? Could it be unrelated like mine?? Or maybe mine IS related but there actually was a bleeding source that would not have been solved with meds. I too was constantly exhausted. It feels great to feel great!

Clara from OR.

[ ] New Member Introduction

Hi Everyone!

I was diagnosed January 14 with primary biliary cirrhosis and auto-immune hepatitis, and also have iron-deficient anemia. The diagnosis was somewhat of a surprise I had no familiarity with liver disease and I don't yet know where I am on the prognosis spectrum.

I have been trying to play catch up in terms of education. Thank you so much for the website and this wonderful daily digest! It is a source of info and real comfort to those of us who are new to all this. Congratulations to all of you on your courage, tenacity, knowledge and good cheer. My healing thoughts are with each of you.

I am taking 3x 250 Urso and some Atarax (itching med) for PBC, and will start steroids and possible another med for AIH in a few weeks. This Christmas I had iron transfusions for the anemia, which was before the diagnosis. They did a liver biopsy, and the hepatologist who is at town Univeristy Hospital in Washington DC, thinks I am mid-way through PBC, but he didn't assign a stage. They will retest the blood Feb 14 to see if the Urso had en effect and I have been told to get a second opinion at s Hopkins. The PBC med lessened several of the symptoms, but I am still exhausted, have sore muscles and joints, and a swollen abdomen. No thoughts of returning to work yet, but this weekend I did walk to the grocery store for the first time since Nov. I contacted local support groups who are really wonderful.

Are they any other overlap cases of AIH/PBC out there? Do you have any advice for newcomers? Any suggestions for specialists in the DC/Balt area? Does anyone know if there is a higher incidence of liver cancer among PBC/AIH patients? I would be interested in hearing from you.

Blessings to all of you.

Kathy in DC area

Report post · February 1, 2005

----- Original Message -----

From: persimmontree@...

>I was diagnosed January 14 with primary biliary cirrhosis and auto-immune hepatitis, and also have iron-deficient anemia. The diagnosis was somewhat of a surprise I had no familiarity with liver disease and I don't yet know where I am on the prognosis spectrum.

Welcome to the group! I also have PBC.

Nina

Report post · November 29, 2005

Hi Chris

You are not alone!

I'm in the UK too - and the Kemps and a few others who identified

themselves in their emails.

all the best

Ian Gander

>

> Hello List,

>

> I just thought I'd say hello and ask if there are any other

> E-sensisitve people on this list in Britain?

>

> I've been e-sensitive for most of my life, but a recent move to

> Scotland and the numerous TV, radio, mobile and Tetra masts around

> here as increased the e-smog levels drastically. A local anti Tetra

> group lent me an acousti-com esmog meter, and it was frightening

the

> amount of pollution out there. Alot of people close by on the

housing

> estate here, have DECT phones, and we're sourrounded by mobile

masts

> and Tetra. Its got to the point where there are certian " no-go "

areas

> through which I can not travel with out the resulting

headache/migraine.

>

> I tried to get away from it all with a week on the West coast of

> Scotland, big mistake. Thecabins we stayed in where beneath two

mobile

> phone towers, and of course becuase it was a rural area and less

> stations, the power was stronger than in urban areas. We lasted 2.5

> days. We only found the masts late on day two as we returned from a

> day trip. By breakfast on day three of our supposed holiday we were

> home again. What annoyed me was that I'd checked the UK Governments

> website showing where masts are. It said it was clear. I rang the

> agency who opereate the website, and they said they depend on

> information given to them by the telecoms companies who erect and

> operate the masts! And to boot they are atleast 3-6 months behind

with

> updates.

>

> Regards,

>

> B.

> Fife, Scotland.

>

Report post · June 14, 2006

Vickie,

I do not have a " Lyme doctor " and I'm no longer receiving treatment for Lyme

disease.

I work closely with my Primary Care Physician, a Doctor of Osteopathy, and a

Naturopathic Physician. Every member of my health care team is someone I

can talk openly and honestly with, they listen to me, they are willing to

learn and are open to trying new things. I see specialists when the need

arises and I demand the same qualities from them. If I am regarded as

simply a patient, and not as a member of my healthcare team, I find another

specialist.

Unfortunately, in today's world it is impossible for any one doctor to know

it all. New information is being presented and published every day. We

must be our own advocates and take responsibility for our healthcare

decisions. This is VERY difficult to do when one is very ill. I recommend

asking a loved one to be your advocate until you can take over that

responsibility yourself if you need to. Because leaving all of the research

and decision making in the doctor's hands is usually not best for the unique

patient.

Research your questions and the answers given to you by your doctors.

Demand quality care from your doctor! Most doctors just get into the habit

of rushing through their day, but if you say, " Wait. I have a few more

questions, " they will usually listen to you.

I live in Oregon. But you should be able to find quality care wherever you

live. Insurance and limited health can make finding the right doctor for

you difficult, but with perseverance I do believe it's possible. Most

doctors honestly want to help their patients get well. They just need a

little help and guidance from, somewhat surprisingly, their patients.

=)

Robynn

[ ] Re: Discovery Channel Comments and New Member

Introduction

Thanks, Robynn, for your comments. Can you tell me who your doctor is

and what he/she is like and where they practice.

Vickie

>

> This is the key to the Lyme disease debate: Can Bb be completely

eradicated

> from the body?

>

> Some believe yes a cure is possible, and others believe no, the

best we can

> hope for is a remission.

>

> Each physician will treat and devise a long term treatment plan

based upon

> their beliefs.

>

> Keep in mind: The patient is one half of the medical team. If you

have a

> doctor who wants to treat you with antibiotics for the rest of your

life and

> you don't want that, make your concerns known. Always be honest

with your

> doctors! Tell them you are going to go off your antibiotics or

when you're

> adding something " natural " or " alternative " to your treatment

regime. Most

> will respect your choices even when they disagree with them.

>

> Ask questions of your physicians and get complete answers. Maybe

your

> doctor has good reason for trying something longer but he or she

just needs

> to explain it better for you to understand. Of course

communication works

> both ways. You need to explain yourself to your doctor as well.

>

> Alternative treatment does not have to be complicated. Again, good

> communication with a Naturopathic Doctor can help that doctor

design a

> treatment plan that may not be exactly what they want right away,

but is

> something that will do some good because you won't get confused. I

think

> NDs probably understand this better than MDs or DOs sometimes.

This is why

> some folks who see NDs take more time to recover than others

because they

> can't afford to see the doctor as much as the ND would like, but

they can

> still produce positive results on a slower schedule. And honestly,

Lyme is

> not something we can get over quickly no matter how it is treated.

>

> I hope you find a doctor soon and once again get on the path to

health.

>

> =)

> Robynn

>

Report post · May 15, 2007

Hi Donna welcome to the group I am sorry to hear about your troubles.

I had a fusion on my neck instead but I would think the recovery time

would be similar to your back one. Mine was pretty long wearing a

collar and not being able to lift more than 5 lbs for a very long time.

I did not have any metal put in there just bone so that maybe why it

was so long. I'd say write down all your questioins and next time you

see your dr ask him everything you think of about the surgery.And if

you aren't scheduled to see him call his office and tell them you have

need to talk to him, he should take the time to answer any questions

you have.. Best wishes and welcome again. Sharon Group Owner

>

> Hi Everyone,

>

> I also have DDD. I have had a laminectomy on L4-5 and am scheduled

to

> have a laminoscopy on C3-5. Has anyone had this surgery? Did it

> work? How long was the recovery. My neurosurgeon said I also have

> some shredding on my spinal cord. He told me I will be paralyzed if

I

> don't have the surgery. Thanks for letting me join this group. Donna

>

Report post · May 15, 2007