Wellness

[LilacTree]

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wrote:

I had pseudomonas in my bladder too, it really doesn't ever go away.  Twice I took IV anti-biotic therapy with a central line for 3 weeks, 2 times a day.  As my doctor explained to me pseudomonas can live in a tank of diesel fuel and thrive.  It is very hard to kill.  If it doesn't bother you, with symptoms...they usually don't treat it.  (In the bladder).  I'm sure it is still in my system.  I'm 72.  I'm sure the antibiotic infusions are probably harder on your body than the bacteria.  I TOO HAVE SEVERAL autoimmune diseases...Also, I've had Klebsiella and I take prophylactic antibiotics daily.

I'm praying for you!

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@highmaintenancejan

I have read about this which is what prompted me to consult with the infectious disease doc again.  Upon examination of the areas I was worried about, and the final urinalysis that was done after my IV infusions, she said I do not currently have a P. aeruginosa infection.

However, I do realize that it can come back in any part of my body at any time.  I had not ever had it before.  I'll just have to be vigilant. 

I am so sorry to hear that you still have it.  It's a very dangerous and insistent bacteria.  Our autoimmune diseases are what makes it more difficult to treat.  My heart goes out to you.

[LilacTree]

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wrote:

@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....

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@Q4u

Hi Q4U!  I wanted to respond to your post in a more detailed way.  If I ask questions that you can't answer or don't remember, please forgive me. 

You didn't specify which autoimmune disease you had that went into remission and has never returned . . . meaning that you are totally cured of this disease?  Do you remember which one it was?  I am intrigued by this because I have four diagnosed and several other symptoms suggesting others, but not actually diagnosed.

I have rheumatoid arthritis, hypothyroidism (or Hashimoto's), Sjogren's, and scleroderma.  Was it one of these?  Unfortunately, none of these diseases have ever gone into remission for me, although my daily Synthroid protocol has kept my thyroid under very good control.

As to the sarcoidosis, it has been mentioned by a couple of doctors, but never actually diagnosed.  I do have a spot on my right lung that stays the same, and has been there for many years.  My symptoms and daily issues never change except to get worse.  It's probably my advanced age.

I have a niece who says she has "every autoimmune disease that exists," but she is not sick, is very active and seems healthy.  In fact, I have two nieces who claim autoimmune issues, but are not sick.  They are 56 and 41, respectively, and I wonder if it's their relative youth that keeps them living what appears to be very normal active lives.

I will research the "pre-historic" infection.  I would like to know more about it.  Again, if you don't want to discuss it or can't remember, please ignore my questions.

I'm really happy to hear your sarcoidosis is in remission. 

[LilacTree]

I did want to give you a short update.  Yesterday the urogynecologist called and advised me the cyst on my ovary is benign.  I was not surprised but glad to hear that.  I know it is common in pre-menopausal women to come and go monthly (all of my daughters have had it), but I guess they were concerned about mine due to my age.

I will be getting a biopsy on the uterine wall (fluid) issue the first week of February.  I am not worried about that either.  It is being done in her office and I was told to take three to four Advils (ibuprofen) before the visit.  I guess that means it's going to hurt.  Blah!!

The kidney stone/fluid doc appt. is this coming Tuesday.

[Toppers3]

Hi @LilacTree,

I have many different chronic health conditions that make me high-risk for picking up different infections.

I have Psoriasis, which is considered an auto-immune condition. It's still mild, but I have noticed that it's spreading a bit. I've had it now for several years.

I don't have RA or Lupus, or any condition like that.

I've had the blood test that shows that I have some type of inflammatory response/condition.

I'm very sorry about the stones...

I passed some very tiny fragments earlier this month that I could see, and I guess that I have been passing even tinier ones that I couldn't see, but that showed up in my test results. Ugh. 

I will be seeing my doctor later this week, and will be talking to him about this, too. 

[sfnative]

@LilacTree

I am rejoicing that you do not have a Pseudomonas infection, have an communication from your Urogynecologist yesterday, that you're celebrating your birthday with a room do-over by your daughters and other good news. 

That does not eliminate the uber angst you experienced in the Infectious Disease physician's office on Friday.  My reaction would and has been the same.  I pray you do not get whatever was causing that patient near you to cough.  Can't believe he didn't have a mask on.  I decided more than a month ago that I wasn't going to walk into any drugstore for any reason until April, because drugstores are full of sick people dropping off and picking up prescriptions.  If I can't use Walgreen's drive-up window, then I'm ordering online.

What concerns me is that you remain undiagnosed for present symptoms beyond the myriad you experience with your autoimmune diseases.  Keeping you in my thoughts and prayers, as you continue to seek resolution through continuing appointments.

(You may rant in my direction any time you wish.  XXX  - Rebecca)

[LilacTree]

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wrote:

Hi @LilacTree,

I have many different chronic health conditions that make me high-risk for picking up different infections.

I have Psoriasis, which is considered an auto-immune condition. It's still mild, but I have noticed that it's spreading a bit. I've had it now for several years.

I don't have RA or Lupus, or any condition like that.

I've had the blood test that shows that I have some type of inflammatory response/condition.

I'm very sorry about the stones...

I passed some very tiny fragments earlier this month that I could see, and I guess that I have been passing even tinier ones that I couldn't see, but that showed up in my test results. Ugh. 

I will be seeing my doctor later this week, and will be talking to him about this, too. 

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@Toppers3

Most psoriasis is an autoimmune disease.  There are some rare exceptions.  Are you on medication for this?

Sorry I don't know much about kidney stones . . . this is a new one for me.  The one I had was very painful while it lasted (two-three hours).  I thought I had another compressed vertebrae . . . however that would never resolve in a few hours.  It takes weeks and sometimes months for that pain to end.

[LilacTree]

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wrote:

@LilacTree

I am rejoicing that you do not have a Pseudomonas infection, have an communication from your Urogynecologist yesterday, that you're celebrating your birthday with a room do-over by your daughters and other good news. 

That does not eliminate the uber angst you experienced in the Infectious Disease physician's office on Friday.  My reaction would and has been the same.  I pray you do not get whatever was causing that patient near you to cough.  Can't believe he didn't have a mask on.  I decided more than a month ago that I wasn't going to walk into any drugstore for any reason until April, because drugstores are full of sick people dropping off and picking up prescriptions.  If I can't use Walgreen's drive-up window, then I'm ordering online.

What concerns me is that you remain undiagnosed for present symptoms beyond the myriad you experience with your autoimmune diseases.  Keeping you in my thoughts and prayers, as you continue to seek resolution through continuing appointments.

(You may rant in my direction any time you wish.  XXX  - Rebecca)

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@sfnative

What a caring post!  How kind you are.  I keep thinking pretty soon these folks are going to get sick of hearing about my many health issues and then someone like you comes along.  All I can say is thank you so very much. 

In fact, all of you who put up with me are angels.

I am going to post in CC about my daughters and what they did for me in my room to organize it and make it easier for me to get around.  They are angels too.

[Toppers3]

Hi @LilacTree,

I just use topical treatment for the Psoriasis, since it's mild.

I also try and keep it really moisturized, and that seems to help it, too.

I had my primary care doctor take a look at it, and he said that topical care was still fine for it, due to the stage that it was in.

By the way, you could never bore me with these health discussions...

It can be very wearying and very trying, going to all of these medical appointments, and then trying to live with these conditions on a day-to-day basis, especially when there's some type of a worsening or a flare-up, too.

Sometimes it seems like maybe we can just go along and cope with them, and then we're hit with some type of a flare-up of one of the conditions we're dealing with, and then I'm like, "Here we go again, now I have to deal with this--again!"

So, I understand. It can get to be frustrating!

It's like riding a merry-go-round that we can't seem to get off of! 

[LilacTree]

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wrote:

Hi @LilacTree,

I just use topical treatment for the Psoriasis, since it's mild.

I also try and keep it really moisturized, and that seems to help it, too.

I had my primary care doctor take a look at it, and he said that topical care was still fine for it, due to the stage that it was in.

By the way, you could never bore me with these health discussions...

It can be very wearying and very trying, going to all of these medical appointments, and then trying to live with these conditions on a day-to-day basis, especially when there's some type of a worsening or a flare-up, too.

Sometimes it seems like maybe we can just go along and cope with them, and then we're hit with some type of a flare-up of one of the conditions we're dealing with, and then I'm like, "Here we go again, now I have to deal with this--again!"

So, I understand. It can get to be frustrating!

It's like riding a merry-go-round that we can't seem to get off of! 

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@Toppers3

I could have written that post, Toppers3.  One would think all we do is cry and moan over our health issues.  I don't . . . I get angry and frustrated just like you!!  But I do have to let it out, and I don't like to do that to my kids.  So you lucky souls get the rants!!

[Q4u]

@LilacTree

The Pulmonary Sarcoidosis I had is considered an autoimmune disease and I was told specifically from my Pulmonary Doctor that it was...  I am totally cured of this disease as it remissed slowly on its own.

"Sarcoidosis is an inflammatory disease that affects multiple organs in the body, but mostly the lungs and lymph glands. In people with sarcoidosis, abnormal masses or nodules (called granulomas) consisting of inflamed tissues form in certain organs of the body."

My Godmother's youngest brother died of it.  Some inflammations affect even the brain...  Also, the disease could be seen in my eyes by an Opthmatologist.

Prior to all this starting, I was sewing up a pair of jeans for my son, just using a needle and thread, pushing the end through the tough material with my right thumb and opening my skin in a couple locations.  My little old dog (with bad teeth) was licking her lips and I went over and lifted her lip with my thumb looking at her teeth, not finding anything.  In six hours from then.... I had three lines going up my arm from my thumb.  Initially they looked etremely faint and we weren't sure what was going on, but they kept creeping up and getting darker.  It started throbbing very badly.... so we went to the doctor's and that's when it started.  The meds they gave me helped it get about half better, but they didn't realize until the course of treatment was up that there might be yet another even more virulent infection.  There was and they treated it but those infections were rampant close to a month!

From that point for the next year I had many strep throats, several brochitus, colds and finally bronchial pneumonia  When examined for the pneumonia is when they found very serious abnormlities in my chest!!  I had "stat" testing because they thought I had cancer.   All the tests were inconclusive until I had a biopsy of the nodes in my chest and the difinitive answer was Pumonary Sarcoidosis... and that's when the real fun was about to begin, until the doctors started noticing that the nodes in my neck were slowly reducing..... and then my chest.

As I mentioned betore, my doctor continued to lessen my appts until I only had one a year with an X Ray!  He was convinced that it had only gone dormant.... indeed, after 18 years, he thought it would be ok with the promise that I come back immediately.... and I've never had to!     

Chronologically that's how it occurred but no one knows if the two infections caused the Sarcoidosis or exactly how/what.... the doctors didn't know and wouldn't guess.  (I know 'cause I asked!)

It's hard being human!  OH.... I read this on a doctor's desk, "With all the illness in the world, the mircacle is when we're well...." 

And dear @LilacTree, I wish you and your daughters well!