springshowers
Frequent Contributor (1K+ posts)
Member # 19863
posted
I was hoping to get through treatment without any complications. I had only about two weeks or so to go. but........
I got violently ill and admitted to the Hospital after an ER visit on Sunday.
Tons of test and pokes and prodding it was determined I had a blood infection and the port was taken out.
The pain of this ordeal like nothing I have ever felt.
Sadly in order to treat this infection now I have to have a picc line put in to continue to treat this current issue.
No Fun at all.
Time to take a deep breath and regroup after this is all settled and cleared out..and .... my first thoughts right now are that my body needs a good time out....
Thanks for all your support through this process.... I so appreciate your help, ideas, support, care and being there.
Blessings..
Still looking forward to those Spring showers and some beautiful flowers
Posts: 2747 | From Unites States Of America | Registered: Apr 2009
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posted
I'm thinking of you!!! So sorry to hear of your setback. But you've come so far and really dealt with a lot. Will be sending light and love your way.
Robbie
Posts: 123 | From Montana | Registered: May 2009
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posted
I'm thinking of you!!! So sorry to hear of your setback. But you've come so far and really dealt with a lot. Will be sending light and love your way.
Robbie
Posts: 123 | From Montana | Registered: May 2009
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posted
OMG -- I had no idea that you were in the hospital. I was wondering why I hadn't seen any posts of yours...Please know I am sending you my good thoughts & well wishes across the ocean.
I know this can feel very discouraging, and you state that you feel your body is telling you that you need a break & need to regroup. In my experience, I have learned to listen to my body.
I hope you are able to get some down time to figure out what the next steps are going to be and if you need some support please know we are here for you!
Posts: 379 | From Sydney, Australia | Registered: Nov 2008
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13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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gwb
Frequent Contributor (1K+ posts)
Member # 7273
posted
springshowers, so very sorry to hear about this. You are in our prayers. His peace and grace be with you and comfort you through this ordeal.
glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
Awwww Spring,
Sorry you are going thru this experience. You have been fighting so hard to get well and you will. It's just tgat you didn't need this complication.
What helps me sometimes when I hit rough spots is to visualize that it's a few weeks or months later and it is already healed.
It really helps to do that. You know the old cliche, "This Too Shall Pass" Hang in there.
Sending you lots of light and healing, Keep us posted
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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springshowers
Frequent Contributor (1K+ posts)
Member # 19863
posted
Thank you all.. I know I am not alone and you understand.
Posts: 2747 | From Unites States Of America | Registered: Apr 2009
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Haley
Frequent Contributor (1K+ posts)
Member # 22008
posted
Gosh Spring,
I'm so sorry. Unfortunately these things are part of the journey sometimes. I'm sure I would be a wreck if that happened. You will get through it and the sun will shine again.
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
I'm very sorry that happened to you. I went through it too.
Absolute nightmare. Definitely one of the worst experiences of my life. My illness itself was equal in misery, but the acute experience of being septic and having an enormous fever (105.9) while still conscious, is terrifying.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
Siciliano
Frequent Contributor (1K+ posts)
Member # 15920
posted
Hi, Spring, I'm sorry to hear this honey. You are in my thoughts and I hope you are going to be okay soon.
All of us are here for you and sending you a great big hug.....We miss you on the boards!
-------------------- I'm sorry but I am no longer accepting any private messages due to my own battle with lyme. Posts: 3897 | From New Hampshire | Registered: Jun 2008
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karenl
Frequent Contributor (1K+ posts)
Member # 17753
posted
I send you my best wishes for a quick healing and hope you are back home soon. I hope you can live without Ivs in the near future. We miss you and your posts.
Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Oh, Spring, I'm so sorry to hear this!! It sounds really terrible. As everyone has said, eventually this, too, will pass. But what we all have to go through would not be believed by the average person!
To have a port removed under duress like that, when you weren't even done . . Lordy! I pray for your speedy recovery not only from this experience, but altogether from the whole Lyme mess.
There has got to come a time in our lifetime when people won't have to get to the stage of illness with Lyme that we have before it's recognized! Love and healing to you.
Posts: 3771 | From around | Registered: Mar 2008
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Lauralyme
Frequent Contributor (1K+ posts)
Member # 15021
posted
So sorry this happened. Miss you alot and sending you lots of positive energy
-------------------- Fall down seven times, get up eight ~Japanese proverb Posts: 1146 | From west coast | Registered: Mar 2008
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posted
Oh no! Please feel better soon, spring. *hug*
Posts: 423 | From Upstate NY | Registered: May 2009
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kidsgotlyme
Frequent Contributor (1K+ posts)
Member # 23691
posted
So sorry to here you are so ill.
Thoughts and prayers are coming your way...Hope you are home soon.
Peace....Christie
-------------------- symptoms since 1993 that I can remember. 9/2018 diagnosed with Borellia, Babesia Duncani, and Bartonella Hensalae thru DNA Connections. Posts: 1470 | From Tennessee | Registered: Dec 2009
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springshowers
Frequent Contributor (1K+ posts)
Member # 19863
posted
Thanks all..
I am home now.. Resting..
Will try take it easy and just have to get to the infusion clinic to get my IV ABX>
After lessons learned and experience with this I asked them not to set up home health but instead I wanted them to find a outpatient clinic. Since this is a once time a day infusion I felt i could do it that way, esp since medicare will pay 100 percent of everything that way.
Thanks again for the loving support.
This has been a horrible ordeal and thank goodness I am out from the critical stages. I have not endured so much pain and feeling so sick.
Yes Horrific ordeal.
I am so numb and do not even want to think about Lyme disease or treatments or any of it. I just feel so worn down and tired of it all.
I am going to just rest and take care of this infection for now.
Uhg
None of the suffering we go through seems fair at all. And the fact that it seems so ongoing and that many just continue year after year and those that get better you see so many relapses..
So very discouraging..
Blessing to all..
Wishing you alll the best in what ever part of the recovery process your in and wishing you all wellness and health and happiness...
HUGS
Posts: 2747 | From Unites States Of America | Registered: Apr 2009
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posted
Glad to hear that you are back home and resting. We totally understand if you need to take a break.
Hang in there and know that we are thinking about you.
Posts: 379 | From Sydney, Australia | Registered: Nov 2008
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karenl
Frequent Contributor (1K+ posts)
Member # 17753
posted
Great news, I just came home and immediately wanted to check how you are doing. So happy everything went well.
Take good care of yourself. There are miracles. My doctor told me that suddenly a lyme patient of his is doing well and back to life. We will also get there. And they might discover new treatments.
Have a good night. Karen
Posts: 1834 | From US | Registered: Oct 2008
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posted
I am still amazed that hubby has never had any problems from his PICC lines. He has had one in continuously for over 7 years now. And we have always done all the infusions ourselves as insurance will not pay for Home Health Care.
He got very discouraged when we replaced this last one as the prior one had been in for 24 months and we thought we should not let it go longer than that without being replaced even though it still worked just fine.
It has seemed to me that more people have problems with ports than with PICC lines but maybe the ones who get ports are sicker to begin with?
Do your docs think having the swine flu recently weakened your immune system further and contributed to this infection?
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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springshowers
Frequent Contributor (1K+ posts)
Member # 19863
posted
Hi There.
Thanks again for the well wishes. I know I will get through this. Ironically my 14 days of treatment Via the Picc Line now is Rochephin.
Maybe it will help me as I have never been on it before this week.
The doctors did not say anything about the flu contributing but I do think they were suspect of my continued over 4 months straight of IV abx treatment and how it affects the immune system.
I do not plan on doing more IV abx after this two weeks is done treating this specific blood infection I had.
I was shocked this happend to me as there were no warning signs really of reddness or contamination and the nurses and I were very careful and sterile. But I guess..at the same time I am not surprised since it seems I get so many infections... overall in life. ..
I surely did not want a picc line after my experience. I begged them to think of another way but they said there wasn't. My body and mind was not ready for something to inserted again into me.
I am not thrilled about it at all.... but as many have posted here ..
This Too Will Pass....
Bea thats amazing that a picc line lasted and lasts so so long.? Wow. Glad there were no problems for you and your hubby. I would never wish it on anyone..
Karenl Thanks so much for your sweetness and kind thoughts..
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springshowers
Frequent Contributor (1K+ posts)
Member # 19863
posted
PS>
I forgot to mention.
There was a team of doctors as I was in the unit that was a diagnostic unit
They said to me that they felt Plaquenil does cause the immune system to be weakened and could have had a play in what happened to me.
Posts: 2747 | From Unites States Of America | Registered: Apr 2009
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
Good to know about the P. spring. Take care and get well soon. Prayers.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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springshowers
Frequent Contributor (1K+ posts)
Member # 19863
posted
LOL Tin Hello.. and thanks...
Yep The Duck Hotel is right.
The doctors did not want to talk about lyme or deal with it whatsoever and had that tone "who told you that you had lyme disease?" "why do you have a port and why are you taking antibiotics for months?"
Blah blah.
But there were a couple nurses who had family who had it and they were sympathetic.
I tried to get the docs to talk to me about doing more diagnostics on me if they felt I did not have lyme disease and they just said they were only going to deal with the emergency and issue at hand with the port infection and to "follow up with another doctor" .. blah blah
I tried.. though.
They did take care of my infection though and I was in the diagnostic unit so I got a lot of attention and care there. I will give them that..
So.. well.. what else is new...
Patch the problem or try to put a band aid on it. If it bleeds .. put another on it. And keep on putting on bigger band aids until it holds enough and pass you along to the next duck...
Well.. Oh well. Someday maybe things will change. This is just the way it is now and I have faith in the next generations it will get better as people continue to express that this is not good enough for themselves or their families.
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