Re: Checkin' in here - Well sort of I guess

[Guest guest]

,

If in the event you are in the need of immunosuppressant therapy, I do not believe the immunosuppressants we previously discussed would cause further harm to your ulcers. You keep referring to steroids ... I can certainly understand and agree with your opting to not take them! ... You have not mentioned whether or not you would decline the other immunosuppressants many of us are on. If, in the event, one of you doctors does bring up steroids, tell him/her you will not take them because of your stomach and are surprised they are suggesting such. Tell them they need to prescribe an immunosuppressant therapy instead of the prednisone ... which is just masking the disease anyway. Although we have no cure, at least the immunosuppressants slow our immune systems down from attacking us further.

You are correct ... I did not recall your testing postive for the ulcer bacteria and having taken the specifically-designed antibiotics for them ... I apologize for not remembering.

Joan

[Guest guest]

Tracie,

While you been away because of being sick or not feeling well enough to view/write messages, I had sent inquirely if anyone had or has this tinisist (mispell probility) the inner ear problem. I understand if this does develope there it can cause hearing loss or result in going deaf. Seems like there was someone who had this, but I don't remember if they did state this was cause by sarcoid. I'am not having any pain but I'am having the constant ringing in the ears. I have a hear-

ing test on 1-25-05 at the V.A. clinic in Grand Rapids. Do you know if this is sarcoid lesion there would it have to have pain from it?

I have written before about having this Peptic Ulcer Disease for a large part of my adult life. I stated that I've taken antibotics for this at different periods of time perhaps as far back to the mid 1980's. Antibotics hasn't been effective enough to get rid of this once and for all. The fact that I've tested postive for H.pryori bacteria many times over the years and get recuring other infections is evidence my immune has been running at poor level at best. The last time I've taken antibotics for specifically for to rid of H.pryori bacteria and help heal this ulcer trouble was in Sept. 2001. This was at the time and probility is now the best treatment for this. This leaves a bad metalic (metal) taste in your mouth that is described in different websites talking about Peptic Ulcers. So if this is the best treatment to rid of this, medcially it didn't work effiecent enough to rid myself of. Christmas time 2001 this ulcer crap returned and I've been having mild to bad trouble

ever since. There has been people who had responded with the best intentions about and said I need antibotics. Somewhere perhaps I just wasn't getting my message across about this. Awhile back in different e-mails I said I had tested postive for this H.pryori over and over and over through the years. Subquencially I've taken antibotics for this bacteria to rid my-

self of this over and over and over the years.

What had been trying to conyey a picture in people's minds if you will what has happen and my "roadmap" or scenario that I very well facing sometime in the future. If this sarcoidosis progress-

es to a point where the lung doc. or the neuro doc. will say, ", I think your health is detorat-

ing enough that you need to be on Corticosteriod or Predinsone treatment". Prevent more detorating of these areas all said and done you have to have this type of treatment. If this was my scenario am I to have a "BIG DEAL" attitude towards I develope a bleeding ulcer, amemic, a very high extreme risk of getting Stomach Cancer? A part of me has thought that's it a "BIG DEAL" to have the effects of sarcoidosis on lung, neuro, etc. and NOT taking such thing as Predinsone because of this "gut" feeling the way my lousy stomach is in. You maybe thinking, "'s stomach is that bad right now that he is so affraid of this area than anything else". The idea that CAN'T be weaned off taking Predinsone in such a situation because of developed a bleeding ulcer (24 hour/7 day a week by the way) and having "rebound" effect or health crisis doesn't appeal to me either.

I can "THANK" my immune system in the first place to allow these ulcers over the years by being ineffiecent and also developing sarcoidosis.

Time to go now

Bye,

"Namaste", what does this mean? Namaste means "The Divine in me, honors the Divine in you." It is an honoring statement used in Buddism. I'm still not feeling too well, and started a 5th round of Zithromax today. I'm hoping that this will finally knock the lung and sinus infections out. Thanks for asking,Tracie ~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database

[Guest guest]

, sweetheart, you made my day! You can call me beautiful any old time;

I won't take it the wrong way. Regarding the tinnitis: how long have you

had it & is it in both ears? Do you have hearing loss? I had sudden

hearing loss in my right ear in June, 1999. Along with the hearing loss, I

had tinnitis, which varied from ringing, whistling. beeping sounds. At

first I thought I would go nuts; I just couldn't stand it. After a few

months it was obvious the hearing wasn't coming back, so I was fitted with a

hearing aid which actually helped mask the noise. Now I notice it most when

my hearing aids are out, all is quiet (like bedtime), but it doesn't bother

me like it used to. I just kind of ignore it. I also got vertigo with the

right hearing loss, which improved after a few weeks, but it still shows up

a couple of times a week. 6 months after the right ear went kaput, the left

one did. No tinnitis or vertigo with the left one. They said nerve damage

in both, first they said from a virus, then neurosarc when somebody with

some brains put everything together. Hope this helps. Rose

Checkin' in here - Well sort of I guess

>

>

>

> Tracie, you've been away for awhile now, are you feeling better? You

> mentioned in a e-mail at the end of this the word " Namaste " , what

> does this mean? Just consersation about this that's all.

>

> Rose, I seened that picture again with the icebag around your head.

> Don't feel embarrassed or depressed because you had to do that back

> then when you thought it was necessary to have this bag around your-

> self. I'am not like that myself now, but I want you to know that you

> are beautiful with or without that bag of ice around your head.

> Don't take the wrong way please. I'am not trying to be a person who

> is trying " advances " or anything. I say that because I'am sure there

> has been times when people have said this from a man and woman may

> take it a wrong way.

>

> I had some chest pain around my left center of my chest. This very

> well have been from my heart. This was going on for about 4 days last

> week. Since then it's gone away. I don't think this was heartburn

> which to me is around the center of the chest. Maybe I should have

> went to the hospital. Well I didn't and this very mild on a scale of

> 0 to 10 I say about a 2.

>

> This ringing in my ears is still going on as ever. Tinisits(mispell?)

> perhaps? Coughing a large part of the day continues like it has been

> for about the last 2 months. Perherial Neuropathy has decreased.

>

> Well time is up,

> bye,

>

>

>

>

>

>

> ~~~~ *** ~~~ *** ~~~ *** ~~~~

> The Neurosarcoidosis Community

>

> NS CHAT:- Has been cancelled for now.

>

> Message Archives:-

> http://groups.yahoo.com/group/Neurosarcoidosis/messages

>

> Members Database:-

> Listings of locations, phone numbers, and instant messengers.

> http://groups.yahoo.com/group/Neurosarcoidosis/database

>

>

[Guest guest]

Tracie, have they checked you for fungal/mold infections? Often a patient with chronic or recurring sinusitis has an underlying fungal infection. Hope you feel better soon. Rose

Re: Checkin' in here - Well sort of I guess

"Namaste", what does this mean? Namaste means "The Divine in me, honors the Divine in you." It is an honoring statement used in Buddism. I'm still not feeling too well, and started a 5th round of Zithromax today. I'm hoping that this will finally knock the lung and sinus infections out. Thanks for asking,Tracie ~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database