Wellness

[LilacTree]

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@LilacTree  I have heard of Black Seed Oil that  helps against strains of bacteria that are antibiotic resistant. Maybe you can do some research on this. I don't know if you can take this but it's worth a try looking in to.  When I was researching this, it said it was effective against p. aeruginosa.

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@piperbay

I will look into it and mention it to my doctors.  Thank you piperbay.

[Trinity11]

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My thoughts and prayers for a complete healing as I have faith this will happen for you.  I know it's very difficult but keep all appointments and trust that all your doctors have looked at your status on their office computer before they've seen you, that they ask so many questions in order to see how you answer compared to what they know....  I know you have courage and I know you're tough (you've been through so much already), and I know that you and your doctors will win!    

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@Q4u

Thank you Q4U.  I don't expect a "cure," as there is no cure for autoimmune diseases.  But I am hoping for a way to avoid these infections, as I do believe they are far more dangerous than anything I have dealt with for the last fifteen years.  My "toughness" is being tested.

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@LilacTree...I have had that type of infection and on prophalactic antibiotics for a year. I now deal with klebsiella infections. I am now resistant to various antibiotics. Your bacteria is common with immune suppressed patients...I know this all too well.

Please don't worry about sepsis. You are being followed and treated. Refrain from reading worst case scenarios. 

I hope for you the very best..

[LilacTree]

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My thoughts and prayers for a complete healing as I have faith this will happen for you.  I know it's very difficult but keep all appointments and trust that all your doctors have looked at your status on their office computer before they've seen you, that they ask so many questions in order to see how you answer compared to what they know....  I know you have courage and I know you're tough (you've been through so much already), and I know that you and your doctors will win!    

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@Q4u

Thank you Q4U.  I don't expect a "cure," as there is no cure for autoimmune diseases.  But I am hoping for a way to avoid these infections, as I do believe they are far more dangerous than anything I have dealt with for the last fifteen years.  My "toughness" is being tested.

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@LilacTree...I have had that type of infection and on prophalactic antibiotics for a year. I now deal with klebsiella infections. I am now resistant to various antibiotics. Your bacteria is common with immune suppressed patients...I know this all too well.

Please don't worry about sepsis. You are being followed and treated. Refrain from reading worst case scenarios. 

I hope for you the very best..

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@Trinity11

My heart goes out to you and cherry, and so many others who are far sicker than me.  And younger, which is so unfair.  I have lived a good long life, so my ailments are not a tragedy.  Thank you for your encouragement regarding sepsis as well. 

I appreciate all of you for your patience with me.  You are wonderful, caring women, every single one of you. 

[kelsey17]

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Sorry you have to deal with so much regarding  your health issue....i too know how that is...........Congratulations on your cutting your prednisone down........that is terrific...i have tried myself a couple times to do that and unfortunately i wasn't successful.............as you and i know...even 1 mg. makes a difference!!  Good luck, feel well.....you aren't alone....

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@kelsey17

I'm hoping.  I might have to reduce the titration by one-half mg.  Increase to 7.5 for a few days.  Thankfully, I am on a low dose to begin with, but everything I've read indicates that the lower one's dose is, the harder it is to titrate.  Seems odd, doesn't it?

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Yes..i myself don't understand it all..............but i tried with  one half mg and actually felt the difference so was unable to cut down further at that point......i wish you much luck...

[Q4u]

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My thoughts and prayers for a complete healing as I have faith this will happen for you.  I know it's very difficult but keep all appointments and trust that all your doctors have looked at your status on their office computer before they've seen you, that they ask so many questions in order to see how you answer compared to what they know....  I know you have courage and I know you're tough (you've been through so much already), and I know that you and your doctors will win!    

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@Q4u

Thank you Q4U.  I don't expect a "cure," as there is no cure for autoimmune diseases.  But I am hoping for a way to avoid these infections, as I do believe they are far more dangerous than anything I have dealt with for the last fifteen years.  My "toughness" is being tested.

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I was diagnosed with the autoimmune disease, Pulmonary Sarcoidosis ..... after a year of feeling absolutely horrible, after also having two bacterial infections in my thumb and the doctor's not being able to control one of the infections, the stunned doctors were amazed to find that the autoimmune disease I was diagnosed with was slowly spontaneously remissing!!  They were also able to make the most rampant infection (and hardest to rid me off) go totally away.  My Pulmonary doctor kept seeing me (he thought it would come back) and I had an X-Ray every year for 18 years after and nothing ever came back. 

I hope this inpires you to continue to keep praying, staying tough and to trust your doctors....   and we will all continue to pray for you as well.

[LilacTree]

I have a 2 PM appt. today with the gynecologist, a 10 AM appt. tomorrow with the infectious disease doctor, and a 1 PM appt. Tuesday with the urogynecologist who handles the kidney issues. 

I still have to make appts. with an ear doctor, the eye doctor, and the dermatologist.  A checkup with my gastro doc is in order also, but that's going to have to wait.

I feel sorry for my daughter who has to drive me to all of these offices.  She has her own doctors to see as well, and she's only 54 . . . much too young to board this merry-go-round!!

[Not looking for responses or hearts, just organizing my brain.]

[LilacTree]

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My thoughts and prayers for a complete healing as I have faith this will happen for you.  I know it's very difficult but keep all appointments and trust that all your doctors have looked at your status on their office computer before they've seen you, that they ask so many questions in order to see how you answer compared to what they know....  I know you have courage and I know you're tough (you've been through so much already), and I know that you and your doctors will win!    

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@Q4u

Thank you Q4U.  I don't expect a "cure," as there is no cure for autoimmune diseases.  But I am hoping for a way to avoid these infections, as I do believe they are far more dangerous than anything I have dealt with for the last fifteen years.  My "toughness" is being tested.

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I was diagnosed with the autoimmune disease, Pulmonary Sarcoidosis ..... after a year of feeling absolutely horrible, after also having two bacterial infections in my thumb and the doctor's not being able to control one of the infections, the stunned doctors were amazed to find that the autoimmune disease I was diagnosed with was slowly spontaneously remissing!!  They were also able to make the most rampant infection (and hardest to rid me off) go totally away.  My Pulmonary doctor kept seeing me (he thought it would come back) and I had an X-Ray every year for 18 years after and nothing ever came back. 

I hope this inpires you to continue to keep praying, staying tough and to trust your doctors....   and we will all continue to pray for you as well.

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@Q4u

Oh my!!  Can you recall what those bacterial infections were?  Especially the one that went into remission all by itself?  You must have a strong immune system for that to happen . . . yes? 

And the two infections in your thumb . . . ? 

I'm so happy you beat all of that.  Good for you, Q4U!!

[LilacTree]

@kelsey17

I took 8 mgs yesterday and will today also.   Too much to get through to try to titrate now.  I will wait a week.  When I do, I'll try one-half a mg. (7.5).  Yes, I know one-half makes a difference, even when it's the last one-half, I would guess that would be the worst.  I don't expect to ever get that low anyway.  What did you wind up with?  I'm hoping 3 mgs.

[Q4u]

@LilacTree

It was the autoimmune disorder that totally remissed!!  (They aren't supposed to go away).  I don't remember the names of the infections except the one that they had the hardest time with (they said) was an infection rarely seen and considered "pre-historic".  The doctors were finally able to give me something that worked.

At this time, when they were adressing the infections, I had three lines going up my right arm, the infections having gone Sepsis.  This was the start of a year of horror.  The infections caused my immune system to get extremely weak!  The doctors were very concerned, especially since the pre-historic one was not going away.  At first they didn't think the infections had entered my lymph nodes but they had and caused the lymph nodes in my chest to grow to the size of lemons, the ones in my neck were affected too.  They thought I had Lymphoma, Hodkins or Leukemia.  They then did a biopsy, which showed I had Pulmonary Sarcoidosis.  With the infections finally under control, we started treating the Sarcoid....  and I worked hard to build up my immune system.  And within 6 months my XRay was showing something remarkable.... the Sarcoid was going away ...

I thank God every single day....

[Toppers3]

Hi @LilacTree,

I'm so very sorry that you are going through all of this...

I have had to deal with Pseudomonas on both of my legs, as a superficial, topical infection.

It has colonized on them, where it's just sitting there right now. 

Luckily there are such advances in medicine now, that there are still antibiotics left that can fight these tough infections.

They are reserved for "superbugs" that have become resistant to the usual antibiotics that are out there.

I went through treatment with them. 

Try not to worry. I know that it may sound trite, but I am really sincere when I say this to you. If you are being seen by an Infectious Disease doctor, you are in good hands. 

I also have to deal with kidney stones on and off, in my left kidney. Again, there are advances there for treating stones.

You can always talk to me about any of this, if you need a forum friend. XOXO

My heart goes out to you, as this stuff can get to you after awhile, and wear one down, that's for sure. Hang in there, and just try and take things as they come. 

Sending thoughts of loving friendship your way.