Re: Digest Number 1805

[Guest guest]

Hi welcome to our world. You'll love it here. Everyone is very

nice and we all understand what you are going through. I am currently taking

mtx. This is my second go round with it. It quit working on me the first

time and nothing in between has worked so we're trying it again. I know if

you read up on it the stuff scares the heck out of you, but consider the

possibilities if you don't take it, they are worse.

I understand about hubby too. Mine was the same way for the first 4 years of

my dx. Now he is much better and we are much happier. Hopefully yours will

also come around. Could be he just doesn't understand what you are going

through and sees you in pain and can't help you. Again welcome. Tery -

ville

[Guest guest]

Hi, my name is . I have been in pain for 3 years and after several

doctors and 10 times more tests. I was finally diagnosed with RA back in

February. I am relieved to know that I am not crazy, that I really was

having fevers for 1 1/2 years and that the pain is real and there is a

cause.

The pain is unbearable and daily and I am finding no relief. I have just

had my liver tested and I am praying for good results. They have had me on

Plaquenil and Naprosyn for two months and its not helping. Just in the past

two months the pain has double and I now have nodules. If my test results

are good I will be able to take Methaltrexate (?) I cant spell.

I am in need of some kind of support group, but there is none in my area.

So, here I am. My husband is not sympathetic to my condition, he still

thinks I should be able to do all the things I used to. I think he is in

denial or just doesn't want to believe it. I already feel better just

getting some of this off my chest. I could talk to my 12 step sponsor, but

she really doesn't understand either. My other conditions are asthma,

hyperthyroid, psoriasis, genetic high cholesterol. I am allergic to

Cillin's, Sulfa's and just recently found out I am allergic to Vioxx (I was

upset about that cause it was the only thing, so far, that took the pain

away).

Well, my hands and wrists are starting to hurt, so I better take a break.

By for now. God Bless :-)

[Guest guest]

,

Welcome to our list. You will definitely find

understanding and compassionate people here. Sorry you're

hurting so much. I hope your doctor will give you

something to help the pain. I am really interested in how

your doctor diagnosed you with RA. I'm curious because for

25 years I was told I had RA and was treated for RA, but

after changing doctors, my dx has been changed to psoriatic

arthritis. Since you have psoriasis, I'm wondering why

they decided RA instead of PA. I have very little

psoriasis, but both of my children have psoriasis, my

daughter having it pretty bad. Neither of them show any

signs of arthritis. I started taking methotrexate (mtx) 2

months ago, but already my liver enzymes are up. I'm hoping

that they come down with the addition of folic acid. I've

been feeling really good, and would hate to have to stop

taking it. I also take vioxx, and I think the combination

of Enbrel, mtx and vioxx have really helped me for the first

time in many many years. Sorry you couldn't take the vioxx

I'm looking forward to getting to know you.

a

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

From: Wade, [mailto:cwade@...]

Sent: Tuesday, May 08, 2001 5:13 PM

' '

Subject: RE: [ ] Digest Number 1805

Hi, my name is . I have been in pain for 3 years

and after several

doctors and 10 times more tests. I was finally diagnosed

with RA back in

February. I am relieved to know that I am not crazy, that

I really was

having fevers for 1 1/2 years and that the pain is real

and there is a

cause.

The pain is unbearable and daily and I am finding no

relief. I have just

had my liver tested and I am praying for good results.

They have had me on

Plaquenil and Naprosyn for two months and its not helping.

Just in the past

two months the pain has double and I now have nodules. If

my test results

are good I will be able to take Methaltrexate (?) I cant

spell.

I am in need of some kind of support group, but there is

none in my area.

So, here I am. My husband is not sympathetic to my

condition, he still

thinks I should be able to do all the things I used to. I

think he is in

denial or just doesn't want to believe it. I already feel

better just

getting some of this off my chest. I could talk to my 12

step sponsor, but

she really doesn't understand either. My other conditions

are asthma,

hyperthyroid, psoriasis, genetic high cholesterol. I am

allergic to

Cillin's, Sulfa's and just recently found out I am

allergic to Vioxx (I was

upset about that cause it was the only thing, so far, that

took the pain

away).

Well, my hands and wrists are starting to hurt, so I

better take a break.

By for now. God Bless :-)

[Guest guest]

Welcome ,

I am in Florida, and I just wanted to say hi and welcome. I

belong to a couple of 12-step programs and they just do not

understand. I have had so many people play Dr. and try to get me to

stop taking all the meds they have me on. I was on steriods for six

months and you can die if just stop taking those all at once.

Anyway, you can get some real good advice here, and we do understand.

I have been fighting RA for all most 3 years too. RA can be very slow

to diagnose, my doctor says 5 years from when the pain starts

sometimes.

They started me on NSAID's and then they added Plaquenil and now I

have been on methotrexate for seven weeks and it seems like it is

starting to help me some. I always have hope I can live pain free

someday.

Keep coming back

> Hi, my name is . I have been in pain for 3 years and

after several

> doctors and 10 times more tests. I was finally diagnosed with RA

back in

> February. I am relieved to know that I am not crazy, that I really

was

> having fevers for 1 1/2 years and that the pain is real and there

is a

> cause.

>

> The pain is unbearable and daily and I am finding no relief. I

have just

> had my liver tested and I am praying for good results. They have

had me on

> Plaquenil and Naprosyn for two months and its not helping. Just in

the past

> two months the pain has double and I now have nodules. If my test

results

> are good I will be able to take Methaltrexate (?) I cant spell.

>

> I am in need of some kind of support group, but there is none in

my area.

> So, here I am. My husband is not sympathetic to my condition, he

still

> thinks I should be able to do all the things I used to. I think he

is in

> denial or just doesn't want to believe it. I already feel better

just

> getting some of this off my chest. I could talk to my 12 step

sponsor, but

> she really doesn't understand either. My other conditions are

asthma,

> hyperthyroid, psoriasis, genetic high cholesterol. I am allergic to

> Cillin's, Sulfa's and just recently found out I am allergic to

Vioxx (I was

> upset about that cause it was the only thing, so far, that took the

pain

> away).

>

> Well, my hands and wrists are starting to hurt, so I better take a

break.

> By for now. God Bless :-)

[Guest guest]

,

I have to answer you. This is a very good support group and information

group. It seems to me that most of the people who write can say " Been

there, done that " and really understand.

As for myself I truly understand unbearable pain to. This started for me

about 2 years ago when suddenly I hurt and was always tired. Until then I

was very active-president of HS PTO, on lots of committees, Town Meeting

Representative, involved in Girl scouts and Boy Scouts and 4H. We raise

Dairy goats and I worked in the barn as much if not more than the rest of

the family. Then the Rheumatoid arthritis hit. Gave most of it up not by

my choice but inability to function. I can lay in bed in the morning and

think of all the things I want to do, then my feet hit the floor and I

remember that I need a walker to get to the bathroom because it hurts so

much in the night and morning and that I can't even sit on the toilet to pee

because then I have to get up.

I've done most of the arthritis drugs-some help, some not at all and one I'm

allergic to-NSAI, SAI, arava, methatrexate, A-sulfadine, enbrel, remicade.

None a magic bullet but so far the remicade is the best- I'm not sleeping

all the time an some joints are not quite as painful of inflamed. The

enbrel was magic for a few months, the the effects got less with time. I am

on no pain meds but have tried some Ultram did nothing, vicodin didn't help

either just made my head feel a bit better.

I can also match you on other ailments, wish I couldn't, but seems most of

us can-anemia, hypothyroid, asthma, acid reflux, genetic blood clotting

factor, depression and the surgeries! Have had 7 abdominal surgeries for

hernia repair and infection in last 7 years with another big one this

summer-reconstructive surgery (I now have no muscle and abdominal wall in my

abdomen), had a cranial bleed in 1996 followed by a craniotomy and what I

thought at the time was the year from hell but not so sure anymore.

Of all the problems, this one has impacted the quality of my existence the

most. My main advice is to endure, be educated, pray and keep looking for

what works for you. Don't give up, big strides in research are being made

and I believe it can be beat.

Temple

Kuddle Kritters Farm

3 Fox Haven Way

Chelmsford, MA 01824

dat2352@...

http://www.homestead.com/kuddlekrittersfarm/index.html

http://www.homestead.com/kuddlekraft/index.html

http://www.homestead.com/kuddlekrittersdairygoats/index.html

>

[Guest guest]

Hi, ,

I, too, am allergic to sulfa drugs. I had a severe reaction to vioxx.

I had the stinging skin rash and a bad yeast infection! My RD said " I was

afraid that would happen but I hoped it would not. " I was not too thrilled.

He knew about my allergy and prescribed anyway.

Maybe you could move on to one of the other drug choices. I know

nothing could make me try vioxx again!

Welcome to the group. They are wonderful and have saved my life.

[Guest guest]

In a message dated 5/10/01 9:03:12 AM Eastern Daylight Time,

writes:

<< Date: Thu, 10 May 2001 02:55:53

From: " Emma Corcoran " <emmacorcoran@...>

Subject: blood chelation- anyone tried it?

I was wondering if anyone had tried blood chelation treatment? My doctor is

considering it as an alternate way of detoxing my liver as I reacted badly

to whey/amino acid/anti-oxident supplementation.

From what I've read it seems to be used mainly with heart patients.

Emma

_______ >>

Emma ---------->>>>>>>> Have you worked with milk thistle and dandelion to

detox your liver? Lemon juice and olive oil?

[Guest guest]

I've run across something different. Have any of your

developed cellulitis because you are immune-suppressed?

Just this week I've developed red welps on my left leg.

When touched they hurt, however, it doesn't itch. I

called my dermatologist first and he can't see me until

January. I told them by them, I'd minus one leg. I am

seeing my Internist on Monday. I work at a hospital and

the nurses here say it looks like cellulitis. Any

information would be appreciated. in Louisiana

AIH 99'

>

[Guest guest]

thanks for the tea tip .. will have to check it out !

[Guest guest]

For the person who asked about aba in Montgomery County, MD:

They do NOT have any public schools that do a real comprehensive aba program.

Some of the autism clesses and MPAC (for preschoolers) incorporate some aba

techniques into their classes.

DMT

[Guest guest]

In a message dated 4/1/2005 8:16:58 AM Eastern Standard Time,

writes:

Since stress is my greatest seizure

trigger, that made sense to me so I started to look for a natural

alternative to an SSRI. 5-HTP has been great and, if it does

prevent depression caused by the brain's inability to function due

to a lack of serotonin, it should certainly help me as a seizure

preventative.

..

..>>> Another option to increase serotonin and also provide support in other

areas is the amino acid, SAM-e. Charlie gets it from time to time....... and,

remember that AEDs by their very nature depress the central nervous system.

mjh

http://foxhillfarm.us/FireBasil/

[Guest guest]

In a message dated 4/1/2005 8:16:58 AM Eastern Standard Time,

writes:

Date: Thu, 31 Mar 2005 15:47:42 -0800 (PST)

From: Grace <foxyfoxgrace@...>

Subject: Re: Grace >>> Herb Book

Marilyn,

Yep, I do and I will get Jane's too, thanks a lot! How's Charlie doing, is

he back home yet?

Grace

foxhillers

..

..

>> We are now 14 days in Harper Hospitall.... on three IV antibiotics and

still dealing with significant infection.

We dealt with two gran mal seizures last Sunday.... yes, on Easter at 2:20 am

and then again at 8:40 am. Glad the Lobelia inflata extract was on hand.

Fortunately, he did not fall out of bed.

More later.

mjh

http://foxhillfarm.us/FireBasil/

[Guest guest]

In a message dated 4/1/2005 8:16:58 AM Eastern Standard Time,

writes:

From: Grace <foxyfoxgrace@...>

Subject: Re: Digest Number 1802

Marilyn,

I didn't see this post until after I ordered the Prescription for Herbal

Healing. I think that PHH might be better for me, what do you think?

Grace

..

..>>> Yes, Grace, I think that the Balchbook would be more helfpul to you at

this point. TCM takes a whole lot of study to be effective. Good luck and

keep on trying.

mjh

http://foxhillfarm.us/FireBasil/

[Guest guest]

Marilyn,

I am really sorry to hear that and you know that you and Charlie will always be

in my prayers. God Bless!

Grace

foxhillers@... wrote:

In a message dated 4/1/2005 8:16:58 AM Eastern Standard Time,

writes:

Date: Thu, 31 Mar 2005 15:47:42 -0800 (PST)

From: Grace <foxyfoxgrace@...>

Subject: Re: Grace >>> Herb Book

Marilyn,

Yep, I do and I will get Jane's too, thanks a lot! How's Charlie doing, is

he back home yet?

Grace

foxhillers

..

..

>> We are now 14 days in Harper Hospitall.... on three IV antibiotics and

still dealing with significant infection.

We dealt with two gran mal seizures last Sunday.... yes, on Easter at 2:20 am

and then again at 8:40 am. Glad the Lobelia inflata extract was on hand.

Fortunately, he did not fall out of bed.

More later.

mjh

http://foxhillfarm.us/FireBasil/

[Guest guest]

I didn't have any luck with sam-e but 5-HTP is WONDERFUL! It has to be of

help with seizures as well as depression. Just wish that I had known about

this a long time ago.

>From: foxhillers@...

>Reply-

>

>Subject: Re: [ ] Digest Number 1805

>Date: Fri, 1 Apr 2005 13:01:31 EST

>

>In a message dated 4/1/2005 8:16:58 AM Eastern Standard Time,

> writes:

>Since stress is my greatest seizure

>trigger, that made sense to me so I started to look for a natural

>alternative to an SSRI. 5-HTP has been great and, if it does

>prevent depression caused by the brain's inability to function due

>to a lack of serotonin, it should certainly help me as a seizure

>preventative.

>.

>.>>> Another option to increase serotonin and also provide support in other

>areas is the amino acid, SAM-e. Charlie gets it from time to time.......

>and,

>remember that AEDs by their very nature depress the central nervous system.

>

>mjh

>http://foxhillfarm.us/FireBasil/

>

>

>

[Guest guest]

,

My deepest condolences. I am sorry for your loss. May your beloved rest in peace. I hope you have plenty of support as you journey through your grief.

Digest Number 1805

[Guest guest]

My goodness Don, I sure hope you'll not have another bout like this one. You've

been through enough already.

Hugs,

Judy P. in Calgary

________________________________

From: " " < >

Sent: Tuesday, May 19, 2009 10:52:06 AM

Subject: [ ] Digest Number 1805

CML SUPPORT AND INFORMATION

Messages In This Digest (1 Message)

1.

Spinal Meningitis From: Don Adkins View All Topics | Create New Topic Message

1.

Spinal Meningitis

Posted by: " Don Adkins " donaldadkins@... dadkins88

Tue May 19, 2009 9:47 am (PDT)

Since this is such a long post, and I apologize for that, I'm cutting and

pasting from a couple of other sites that I participate in - basically because

I'm too lazy to re-type it every time.

Hi Everyone,

I've had a slight set-back since I've last posted, but I am slowly recovering.

As some of you might know, I am a transplant patient, post almost 5 years now. I

did relapse a year after transplant and am on 80mg of Sprycel daily as a

preventive measure. I've been PCRU for the last three years -- just a short

history.

On Monday, May 18, 2009 I awoke about 7:00am with nausea and a slight headache

and an overall feeling of " awfulness " . I sensed this was not going to be just an

ordinary post-transplant sick day. I asked my wife to drive me to Presbyterian/

St Lukes hospital where my post-transplant care is being done. Unfortunately

that drive is about an hour away, and after five minutes in the car with my pink

" puke " bucket I knew there was no way I was going to make it so we diverted to

the closest hospital.

When I arrived at the ER I was having a tough time with nausea and a continuing

headache so my wife dropped me off at the door and they wheeled me right in to

the ER exam room. Fortunately their was an Infectious disease doctor on duty,

and for whatever reason, he immediately suspected meningitis so he ordered a

spinal tap and blood test, and there it was, Bacterial Meningitis from the

bacteria ella ii http://web.mst. edu/~microbio/ BIO221_2004/

ella_ morganii. htm. What a mouth full, and according to the doctor very

rare. Prior to even identifying what was happening, he had already put me on

three wide-spectrum bacterial antibiotics, and as luck would have it, merrem

http://www.rxlist. com/merrem- iv-drug.htm was one of them - the actual drug of

choice for treating this rare type of spinal meningitis.

Here's a little note I picked up from surfing the net on this infection:

" We report herein a case of ella morganii-associated acute purulent

pericarditis that developed 3 years after allogenic bone marrow transplantation.

The patient was successfully treated with surgical drainage and cefotaxime for 6

weeks. Splenectomy and immunosuppression for chronic GVH-D are likely to have

favored the development of this rare infectious complication after BMT. M.

morganii should be added to the list of bacteria causing purulent pericarditis,

especially in immunocompromised hosts. "

I remember asking the doctor if I was going to make it as I was passing in and

out of consciousness. He said it's not looking great but if I could hang on for

48 hours and the drug worked I would have a fighting chance. The next two days I

was semi-conscious but don't remember much but excrutiating headache pain. This

also could have been cause partly by the spinal tap.

When I awoke Wednesday morning the doctor was standing over me telling me to

hang in there I was responding well to the antibiotic. I've continued to gain

strength and was released this afternoon with home nursing care for the next two

weeks. I need a 21 day course of this IV antibiotic. We only have a suspicion

that the bacteria entered my body through my port, of course like all other

post-transplant complications we'll never know for sure.

Thank you for letting me sharing this information -- knowledge is power...

Blessings,

Don

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[Guest guest]

Hi Judy, I agree, I'm going to try to be a good boy for awhile.

Blessings,

Don

>

> My goodness Don, I sure hope you'll not have another bout like this one.

You've been through enough already.

>

> Hugs,

> Judy P. in Calgary

>

>

>

>

> ________________________________

> From: " " < >

>

> Sent: Tuesday, May 19, 2009 10:52:06 AM

> Subject: [ ] Digest Number 1805

>

>

> CML SUPPORT AND INFORMATION

> Messages In This Digest (1 Message)

>

> 1.

> Spinal Meningitis From: Don Adkins View All Topics | Create New Topic

Message

> 1.

> Spinal Meningitis

> Posted by: " Don Adkins " donaldadkins@... dadkins88

> Tue May 19, 2009 9:47 am (PDT)

>

>

> Since this is such a long post, and I apologize for that, I'm cutting and

pasting from a couple of other sites that I participate in - basically because

I'm too lazy to re-type it every time.

>

> Hi Everyone,

>

> I've had a slight set-back since I've last posted, but I am slowly recovering.

As some of you might know, I am a transplant patient, post almost 5 years now. I

did relapse a year after transplant and am on 80mg of Sprycel daily as a

preventive measure. I've been PCRU for the last three years -- just a short

history.

>

> On Monday, May 18, 2009 I awoke about 7:00am with nausea and a slight headache

and an overall feeling of " awfulness " . I sensed this was not going to be just an

ordinary post-transplant sick day. I asked my wife to drive me to Presbyterian/

St Lukes hospital where my post-transplant care is being done. Unfortunately

that drive is about an hour away, and after five minutes in the car with my pink

" puke " bucket I knew there was no way I was going to make it so we diverted to

the closest hospital.

>

> When I arrived at the ER I was having a tough time with nausea and a

continuing headache so my wife dropped me off at the door and they wheeled me

right in to the ER exam room. Fortunately their was an Infectious disease doctor

on duty, and for whatever reason, he immediately suspected meningitis so he

ordered a spinal tap and blood test, and there it was, Bacterial Meningitis from

the bacteria ella ii http://web.mst. edu/~microbio/ BIO221_2004/

ella_ morganii. htm. What a mouth full, and according to the doctor very

rare. Prior to even identifying what was happening, he had already put me on

three wide-spectrum bacterial antibiotics, and as luck would have it, merrem

http://www.rxlist. com/merrem- iv-drug.htm was one of them - the actual drug of

choice for treating this rare type of spinal meningitis.

>

> Here's a little note I picked up from surfing the net on this infection:

>

> " We report herein a case of ella morganii-associated acute purulent

pericarditis that developed 3 years after allogenic bone marrow transplantation.

The patient was successfully treated with surgical drainage and cefotaxime for 6

weeks. Splenectomy and immunosuppression for chronic GVH-D are likely to have

favored the development of this rare infectious complication after BMT. M.

morganii should be added to the list of bacteria causing purulent pericarditis,

especially in immunocompromised hosts. "

>

> I remember asking the doctor if I was going to make it as I was passing in and

out of consciousness. He said it's not looking great but if I could hang on for

48 hours and the drug worked I would have a fighting chance. The next two days I

was semi-conscious but don't remember much but excrutiating headache pain. This

also could have been cause partly by the spinal tap.

>

> When I awoke Wednesday morning the doctor was standing over me telling me to

hang in there I was responding well to the antibiotic. I've continued to gain

strength and was released this afternoon with home nursing care for the next two

weeks. I need a 21 day course of this IV antibiotic. We only have a suspicion

that the bacteria entered my body through my port, of course like all other

post-transplant complications we'll never know for sure.

>

> Thank you for letting me sharing this information -- knowledge is power...

>

> Blessings,

> Don

>

>

> Back to top Reply to sender | Reply to group | Reply via web post

> Messages in this topic (1)

> Recent Activity

> * 3

> New MembersVisit Your Group

> Finance

> It's Now Personal

> Guides, news,

> advice & more.

>

> Auto Enthusiast Zone

> Passionate about cars?

> Check out the Auto Enthusiast Zone.

>

> Stay healthy

> and discover other

> people who can help.

> Need to Reply?

> Click one of the " Reply " links to respond to a specific message in the Daily

Digest.

> Create New Topic | Visit Your Group on the Web

> Messages | Files | Photos | Links | Database | Polls | Calendar

> MARKETPLACE

> I make $450 per Day. Find out How. Part Time!.

>

> ________________________________

> I made $5,827 last week.. Find out How. Part Time!.

>

> ________________________________

> Mom Power: Discover the community of moms doing more for their families, for

the world and for each other

>

> Change settings via the Web ( ID required)

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Traditional

> Visit Your Group | Terms of Use | Unsubscribe

>

>

> __________________________________________________________________

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Get it Now for Free! at http://downloads./ca/internetexplorer/

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