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I Can't Stop Getting Sick This Year...need Help!


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Hello everyone, I finally have a tiny bit of energy after the Tylenol brought my 101.5 fever of today down to 100. I have been in the hospital most of the week again after being in. Two other times for a total of 8 days with influenza A. This time they are not sure what virus I do have, but considering the fact the ambulance would only take me to the hospital right down the street, they treated me with more respect than where I usually go. I learned a lot. The marveled that they never saw a creature like me...except one doc who worked at both places and remembered me. They said was the rest of your close family treated with tamiflu???? NO.....hummm

I wasn't my best at first ,as My head hurt so bad with knife stabbing pains that I was unable to answer what meds I took and my home nurse rushed over so fast she forgot my new list she had made for me. As, since my last admission we were determined to make a list that a hospital would clearly understand and go by. Before I knew it, the nicest doc was afraid to let me go home. I told him I could, as I was just going to take a cab to the hospital that I use in the morning for hydration and if anything was really wrong they would admit me. But laying down my heart rate was 140. I overheard, a nurse whisper to him ,"did you go and read about her condition online and her condition" he replied, "yes".

He told me I could even call my hospital and see if they had a bed and they would transfer me, but none were available. My friend who worked there confirmed it. So, now I quickly spiked high fevers, higher than my last illness that I thought I was going to die. I could not open one eye for two days. I had infection disease, cardio, hospitalist doctors , respiratory therapy,....and nurses who all tried to understand to the best that they could, but there is always one..... One doctor said that they didn't want to mess in my hospital's sandbox as that wouldn't be very nice, but they would gather as much info to send me back. I used to work there many years ago and I believe God sends us places for a reason.

It took me four days before I could try to comb my hair. We had upped my meds for my heart rate last week. as my heart rate still wants to be 140 laying and even higher standing. So I avoid standing. Last week at hydration, I knew my heart rate was crazy so I got out my I pod touch and looked up, "instant heart rate measure app free" and downloaded this free app that they say if for he iphone and works best with the flash. But, in good light it come out pretty close... I used it and called the nurses in and was still having another Pots flare. So, if you need a free heart rate monitor try it or buy it or 99 cents.

Anyway they had told me it would be a long time to recover after the flu, as it had gotten in my blood. They said it doesn't always show up in the blood. All the cultures they took at the hospital didn't grow anything ,but they said I most likely have a virus. I feel like a hunter and gather as once a day I go downstairs and grab what I need for the day and bring to to my room. I look like a drug addict with all the track marks on my arms now. I'm going to have to cut this short as, I'm so tired and I miss all my friends...when I got home my IV was still in my arm...I had taken a cab and just wanted to go in the shower and go to bed. so I took it out. Forgetting it needed to be flushed. Just as I was being wheeled out a patient in another room ripped their IV out in the hallway and it looked like a murder had taken place.

But I need help, tips to survive, rally back, I don't ever want to be in the hospital again, but I know that's not reality. Enough is enough. Maybe my Pots is just progressing, as I can't do things that I did a year ago...

I'm sweating really bad and need to wash down with alcohol for the fever.

Hugs and love to all ~

Bellamia ~

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Bella, I'm glad you jumped on the forum to let us know how you've been, even though not too good, from the sounds of it!! I hope things calm down faster than anticipated.

If you are going downhill, do you think it might be time for a new evaluation?? Have you had all your endocrine stuff looked at recently---pituitary, adrenals.

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(((((Bella)))))

Have your immunoglobulins been looked at lately? Maybe IVIG would help... Rest and heal, honey.

Gentle Healing Hugs-

Julie

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(((Bella)))

SEnding lots of love and prayers your way for an easing of your symptoms. I wish I had words of wisdom aside from keep hydrated and drink your chicken broth.

glad you posted to let us know how you were - you've been missed

noreen

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((((((((((((I LOVE MY FRIENDS HERE))))))))))))))

Been so sick, I had to stop my Gastrocrom and now I need to start it really slow. Like one then wait a few days. Julie do you take that also? Thanks for the quick responses...I had a bazillion tests and now I have to wait for the doctors to order more. I'll be in bed reading all. Too tired to answer tonight.

LOVE,

xxxxx's

Bellamia ~

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BellaMia consider yourself hugged but with hand sanitizer just in case! LOL! Seriously though, I swear by something called Elderberry. I have it in a liquid form that has an eyedropper type top and I put some in my smoothie every morning and some at night. It's a powerful anti-viral and I have not been sick with anything more than a slight head cold for over a year. When you do get sick if you take it like 4 times a day your sickness is cut in half! Highly recommend and I have never had a reaction to it. Wish you the best! :rolleyes:

KC

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Great support and I'll look into the elderberry.... Nice to hear from all of you again. I have moved over to facebook after Mom died, as that is where all my family is and some members I have met there. Other new ones I have met also...but, When i need to really write and poor out my heart and soul I come back home sweet home. I have to let the dog out and catch a cab for the hospital now. I'll check in later.

love, love, love,

Bellamia ~

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Never fun being in the hospital, hope you continue to improve. Whenever I hear sick a lot, I wonder has this person been tested for a primary immune deficiency?

After years of being tested for the basics and many autoimmune conditions, that all were normal except a positive ANA. I was finally diagnosed with an autoimmune small fiber autonomic neuropathy by a neurologist, not a rheumy. During treatment for that is when they finally caught that I was immune deficient, specifically common variable Immune deficiency CVID. I can now look back and see that I had mild symptoms of infection, I would feel terrible like you get right before the flu, alot of gi pain and muscle spasms, but my fevers were mild to none, until the infections got pretty bad, like my colon popping. I'm still fighting some kind of infection that antibiotics aren't working to clear, so I'm waiting to see infectious disease at mayo, it may be viral or fungal, taking forever to get seen, unless in the hospital hard to get a consult on this one, inspite of referral from my neuro. I am treating with IVIG, it helps your immune system fight, but you still need other meds if you already have an infection on board.

Any way the reason I bring this up is that if you are immune deficient a simple illness like the flu can make you so sick you don't survive. It sounds like you were pretty ill this time around. Mack's mom mentioned it to you in an earlier post about the ivig.

If this might be something you want to rule out, the goldstandard test is called a "Total quantitative immunoglobulin. There are other associated tests as sub igg panel, vaccine challenge and IGd and e. You can also google any of these terms to read more there is a lot of info. Until I got diagnosed it was anywhere on my radar, but does fit my history pretty well. My HR/BP also always get worse when there is an infection on board. Hope this helps you and that you feel better soon.

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Bella,

So sorry, you are so sick. My first thing to grab for virus or bacterial is Olive Leaf. It has cured malaria when antibiotics haven't. I also, like apple cider vinegar - it will kill streep in 24 hours. Those are my two go for sickness things.

Feel better soon.

Issie

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Thanks for all the great, caring tips, tricks and ideas. They did a whole bunch of IGG type of tests a while ago. This time they retested me for EBV and it is rather hard to read and understand. I had it really bad at one time in my life, but never knew it. They kept saying you have a virus of some kind, then I started reading my cat-scan and all the scarring seen on both my lungs, when I don't and didn't even smoke. Probably from all the darn chest x-.rays I have had my whole life...

I had a long day getting fluids... The staff of the hospital I go to makes me feel like family. If I've been there over 7 years does that mean we are officially legally family :D . My friend there gave me a VIP pin. I love them all, as they really make me feel loved and cared for. Got to look up those herbs and I love vinegar. I used to crave it and drink it all the time. I'm strange and needing sleep. I had a big day with Dr. Castells tomorrow, but canceled due to lack of energy and I have to take two cabs to get there. Plus, no veins left for them to take any more blood, this appointment was going to check levels.

Well, thanks all, it is nice to be back.

Bellamia~

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