Re: Newly Diagnosed Also

[Guest guest]

Hello Mydog.....,

You have a number of treatment options from prednisone to antibiotics to

DMARDS. It will take some time and a few visits to MD's to find the correct

treatment. I think it is also good to talk over ReA treatments with an your

internist etc. The more opinions you get, and your research - including going

over the last years emails to RISG, will give you better control of your

outcome. A lot of people are in remission / cured by a variety of treatments.

Good Luck & Happy 2008

Greg

**************************************See AOL's top rated recipes

(http://food.aol.com/top-rated-recipes?NCID=aoltop00030000000004)

[Guest guest]

Thanks Greg for responding.

It's comforting to have found this forum. Just to connect with others

who have this affliction is a Godsend.

I have been reading and trying to understand it. I think you are

right; I will need to find what works for me individually. What a

complex thing this ReA is.

[Guest guest]

Hi Greg, and Todd.

One of the reasons that my AS and the other spondy's I have were not diagnosed

quickly is the fact that they skipped on generation, neither my father or mother

had the problems but I understand through family in England that one of my

Grandfather's had some real problems with back pain. Of course that was before

the diagnostic tests we have now. But I agree, watching my daughter and two

grandsons with Spondy's I worry my head off. Not that the worry does anyone any

good for them.

Yes, it is great to have our Lord and Saviour Jesus Christ to lean on and ease

some of the pain and He does do that. I am claiming a partial healing of my

Diabetes as I hardly take short acting insulin at all anymore. When I switched

from Levemir Insulin, a new long acting insulin, to NPH insulin, because of the

cost, my blood sugar readings dropped like a ton of bricks and three nights in a

row I woke up in the wee hours with very low blood sugar readings, they were,

2.3, 3.3, and 2.0 mmol/l and should have been in the 5.0 to 7.5 mmol/l range.

Needless to say the sugar cubes took quite a hit. So I have gone from 100 units

of Levemir and 80 units of Regular Insulin daily to 66 units of NPH only. That

is strictly a gift from God and I praise His Holy name for it.

However my fused SI Joints and fusing up to T-7 have affected my spinal chord.

The fusions are impinging on the nerves in the Cauda Equina section of the

spinal chord. I am getting the numbness in the saddle area and my bowels and

bladder are affected. That causes some rather embarrassing moments at times.

That and the nerve involvement in the Cervical Spine keep me wondering what part

will get hit next. But, it could be a lot worse.

My ministry has taken the biggest hit as all I can really do anymore is preach

and preside at the Eucharist, I rely on my Deacons to carry on the rest of the

service and daily ministry. My senior deacon will be ordainded to the

priesthood at Easter and he will take over the whole ministry, even the

preaching. I will get to do Bible Study 24 hours a day.

We have also gotten so disgusted with the television offerings off Satellite

that we shut that off before Christmas and our regular broadcast antennae will

be going up in the month of January. We should be able to get 2 or 3 regular

broadcast stations and one broadcast religious network, the Miracle Channel. It

has been a bit of a downer not having the stupid thing on, but I am now making a

rather small dint in my library of a thousand books or more. I know I should

catalogue them and put them in an orderly fashion on the book cases, but, there

are books to read and each time I pick one up I am gently surprised. Of course

my collection of the Early Church Fathers writings is a bit too heavy for now,

but maybe I will read more as time goes on. There are several volumes covering

from about 350 AD to the middle ages. They can be very heavy reading but do a

very good job of outlining how Christianity came through it's first 500 years.

I also have 5 collections of Bible Commentaries which are always very good to

read. The only books I know of, other than the Jewish Bible, that have one

bible verse per page along with commentary, exegisis, and translation filling

the rest of the page.

But I am now wandering a bit so I will sign off for now, and will catch up with

some other emails.

Fr. Dave

PS, if any of you and your families would like to be added to our prayer list,

please send me an email privately with names and ages of those you wish prayed

for.

[Guest guest]

To or anyone else:

Has Anyone tried this approach and CURED their ReA? This is not to

treat the symptoms, but to actually cure it?

http://www.drmirkin.com/joints/J159.htm

[Guest guest]

- Nope, I have never heard of anyone being cured of it. Maybe go into

remission for a while, but not cured. D. in OR

- In , " " <mydogsowner@...> wrote:

>

> To or anyone else:

>

> Has Anyone tried this approach and CURED their ReA? This is not to

> treat the symptoms, but to actually cure it?

>

> http://www.drmirkin.com/joints/J159.htm

>

>

>

[Guest guest]

,

The Doctor in this link claims he cures it!

http://www.drmirkin.com/joints/J159.htm

I am wondering if anyone has tried what he advices, and feels cured now?

[Guest guest]

I just answered my own question by searching the forum.

I guess the minocycline helps some, but not all.

[Guest guest]

Dear Fr. Dave,

Here over the last couple of weeks I have become a full believer that

maybe I really had no trigger at all when it came to my Reiter's

since apparently I have learned that not only I and a cousin share in

the spondy's but as well as my little sister, my aunt and now my

mother (who was just recently diagnosed with a spondy-which one has

yet to be determined- should know by Jan. 11th). I wonder if the

doctor's have ever considered that in some cases where there is a

strong genetic case for them there is no need for a trigger only the

course of when the gene will hit. So far from the way that things

look it is three generations thick. And I do not mean just effecting

one or two of that generation but everyone in that generation.

And like you, I worry about my children having this or one of the

many different forms of this disease. My children, I pray, will be

spared if the good Lord is willing. My oldest daughter, who just

turned 11 years old last October, is a survivor of Acute Lymphomic

Lukemia, aka A.L.L. and went throug two round of aggressive chemo

and finished with radiation. She is doing well now and we are in the

maintenace stage-basically check up and blood tests every couple of

months to make sure that she is cancer free. My children have been

through enough pain and I would hate to see them have to deal with

something that I have passed onto them even though I could not help

it.

Barbara

>

> Hi Greg, and Todd.

>

> One of the reasons that my AS and the other spondy's I have were

not diagnosed quickly is the fact that they skipped on generation,

neither my father or mother had the problems but I understand through

family in England that one of my Grandfather's had some real problems

with back pain. Of course that was before the diagnostic tests we

have now. But I agree, watching my daughter and two grandsons with

Spondy's I worry my head off. Not that the worry does anyone any

good for them.

> Fr. Dave

>

> PS, if any of you and your families would like to be added to our

prayer list, please send me an email privately with names and ages of

those you wish prayed for.

>

>

[Guest guest]

Dear ,

I can understand the reasons that your doctor would not want to

increase the predisone. There are many bad side effects from high

dosaged as well as long term dosaged of this medication. Please take

the time to look it up. I know that my doctor had me on it and

besides some irratating side effects like the jitters, insomia, and

eating none stop, the pain eventually came back, it was always there

just not as much. He even tried short bursts of it until I sat

crying in his office begging him to stop with the predisone and try

something else at least give me some pain medication because the

predisone didn't help any more at all, plus I continued to gain

weight, I was moody, and just plain out miserable. At this time he

had me on nothing stronger than just 500 mg Naproxen twice a day.

My Reiter's is chronic and the only difference that I have in it is

that I have some days better than some. It has changed my life a

lot. I have always worked on my feet and now my doctor believes that

I would be lucky if I could even find a part time job sitting and

keep it since I have so many flare ups and constant pain.

At one time I could pick up several hundred pounds now I am lucky if

I can pick up anything that is more than ten to fifteen pounds. It

is funny that at one time I could pick my boyfriend up and throw him

over my shoulder like a sack of potatoes (gotta love us country

girls) and now, I am lucky to get my big butt out of bed on some days.

Even some people with the more chronic form of this disease

eventually do go into remission. Yes, it is harder to treat if you

are considered chronic and the remissions normally seem shorter from

what I have read. I have never had a remission. I hope that one day

that I do.

Like I have said it has caused me to make a lot of changes in my

life. I battle from time to time with depression since I feel at 30

years of age, soon to turn 31 this month, and a mother of two girls

ages 11 and 8, that I should be doing what I want to do with my life

and not have to depend on other people. I have always been very

independant and my pride has taken a huge hit dealing with this

condition. I guess the Good Lord has a way of making us humble, for

I thought that I could do it all.

And at one time I did, I have been a single parent for many years,

even during the time that my oldest daughter was fighting cancer, I

worked 80-90 hours a week with turn around trips and weekend trips to

Fort Worth, TX so she could recieve chemo treatments and so on. I

thought that I would invincable at one time, however, well you get

the point.

My best advice for you is to take it one day at a time, talk with

family and friends, educate yourself about your disease, I know that

most of the doctors at the E.R are impressed about the knowledge I

have about my disease, and talk with your doctor. Only with you, him

and God working together will things get better. What doesn't break

you only makes you get stronger.

Barbara

>

> I have many questions and fears.

>

> I started on Prednisone 10 mg and Sulfazine 2000 mg daily. I am

still

> having a lot of heel pain but the Rheumy doesn't want to increase

the

> Prednisone.

>

> I guess I am wondering what the future will hold for me. Do most

> people live painfree productive lives with this? Once it's chronic,

> is it harder to beat? Are the symptons pretty individual with how

> it's manifested?

>

> My head is spinning... I guess I'll try reading/researching here so

as

> not to post redundant questions on this forum.

>

> It helps to know I am not alone, and that others are here battling

it

> as well.

>

> I wish everyone a happy 2008!

>

[Guest guest]

Barbara~

Thanks for your response and sharing.

I also agree that the lower the dose of Prednisone the better. It's

hard to remember this though when I am hurting. I just want it to go

away now....!

I will pray for you Barbara. I do wish you find your remission!

Keep The Faith,