feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Hey All,
Been in treatment for over two years without improvement. My symptoms have become worse since starting treatment.
I usually try to be upbeat and hopeful but I'm having problems today finding that strength...I'm supposed to start IV therapy for the 3rd time tomorrow.
I am NOT feeling very good about this.... very depressed. I feel that all of the 'stuff' that goes along with IV (anxiety about clots, keeping dry and clean etc.)is really bringing me down.
It's hard enough getting through a day without the added responsibility of having to wrap my arm when I shower...flushing lines, infusing ...ugggg.
I'm just feeling really worn out by this whole process...and the fact that i have only gotten worse isn't helping my mind set...
Don't know what I'm getting at....just know that i'm at the end of my line emotionally...
Thanks for the space to vent. ff
Posts: 3975 | From usa | Registered: Aug 2007
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kidsgotlyme
Frequent Contributor (1K+ posts)
Member # 23691
posted
I don't have any answers for you, but I just wanted you to know that I am saying a prayer for you now.
Have you seen "Under Our Skin?" I'm thinking that one of the men on there didn't see any improvement until after three years, so hang in there!!
-------------------- 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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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
feelfit,
I am very sorry that you are feeling so depressed about all of this.
I wish I had a magic answer for you.
Hope is essential for all of us.
Have you read the post by Morningsong dated 3/5/2010 under the topic "God thought 3/1-3/7"?
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
feelfit,
I am feeling much the same as you. Its a stinky place to be at. I will pray that your IV tx goes smoothly. I also hope you get some improvements.
If you need anything please ask. you have been there for me multiple times, so anything that I can do PLEASE do not hesitate to ask.
GOd bless my friend, hugs, melissa
Posts: 3905 | From USA | Registered: May 2007
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
Seek I would come do it for you...No really!
Prayers everything goes great and you get the best response.
-------------------- 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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Sending good thoughts that better days are just around the corner for you.
*hugs*
Posts: 423 | From Upstate NY | Registered: May 2009
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Pinelady, I'm Feelfit, not Seek! Lol. I know that some of you would do anything to get IV tx. I truly understand that. I am fortunate that I receive it....not so much disturbed about the IV as I am about '0' improvement....sorry to whine.
Merry, Topaz, Pinelady...thanks for your good wishes....Merrygirl, I know that things have been rough for you as well...likewise, i've got your back if you need anything. Thanks for your friendship.
posted
If you are not comfortable doing iv's I would express this to your doctor. It is your body
and you should not do something you are not comfortable with. Would your llmd come up with
plan B if you want to try something else? It sounds like you need to hit the co-infections harder too, maybe that would be an option?
Hope this all works out for you. Marcie
Posts: 323 | From Michigan | Registered: Sep 2006
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merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
have you had the joy of bicillin yet? LOL
Posts: 3905 | From USA | Registered: May 2007
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MDW005
Frequent Contributor (1K+ posts)
Member # 22706
posted
Feelfit, are you felling emotionally better? If not, I'm sorry you are down. Maybe the weather is playing a roll in your down mood.
Spring is almost here. Wish you well. When the stars come out tonite, I will wish upon the first star I see and send it your way.
Diane
-------------------- God's promises mean you always have something wonderful to look forward to. Posts: 2150 | From Georgia | Registered: Oct 2009
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Marcie, this doctor marches to his own drummer. He has his own protocol...does treat co's extensively. He believes in switching up often..i am ready to go on the IV's this is my last time though...no more after this.
Merrygirl, haha, yeah, I have had the 'joy' of bicillin. I must be weird, well, I know I am, lol1 but I LIKED bicillin...dose was too low though 1.2 mu week for 12 weeks.
Diane, yep feeling a bit better emotionally, awww thanks for the star wish! ready to take the plunge.
Thanks again everyone, ff Feelfit
Posts: 3975 | From usa | Registered: Aug 2007
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posted
Feelfit, this breaks my heart! But thank you so much for being so brave and asking for support. You've been there so many times for so many of us...the least we can do is say a few extra prayers for you!
If there's anything I can do to help, let me know. I know there isn't much I can say, because I know your frustration all too well...but just know that you have someone praying for you and hoping for you...and you will ALWAYS have a cheerleader here in me I'm rooting you on. Always.
Funny, I just found a quote today...maybe you'll like it. Maybe I came across it just because I was meant to share it with you!
``You must give up the life you planned in order to have the life that is waiting for you.'' - Joseph Campbell
I know this journey is way longer, and way more painful than you ever thought it would be...but there's a light at the end of the tunnel and a greater purpose on the other side. You're going to do great things with everything you've gained from this. You're incredibly strong.
Cheering you on. LL19
Posts: 710 | From West Coast | Registered: May 2008
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
Sorry feelfit. My brain is not behaving.
-------------------- 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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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Little,
See, I'm telling you you're a very nice young woman with a lot of compassion and caring...you're wise beyond your years and so kind.
I know that you're road is so difficult, yet here you are, offering support...you really choke me up in a good way
Thank you for sharing that wonderful quote with me....very meaningful, no?
So here is to all of us in the trenches...good luck and godspeed........
feelfit
Posts: 3975 | From usa | Registered: Aug 2007
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
*Hugs* feelfit,
I hope that all went well yesterday with your PICC line placement and first infusion.
I also wanted to let you know that I completely understand your fears of complications and the dread that comes along with extra responsibilities of caring for your PICC. These things are huge.
In my mind IV is the treatment of last resort. I tried everything else before I was willing to allow my doctor to proceed with IV therapy. It sounds like you are in the same situation.
Feelfit, I hope that you are feeling better today. Take it easy, rest your arm, allow your new meds time to do their work.
Take care friend. Feel free to PM me if you get frustrated or just need to vent and of course if you ever have any problems or concerns with your PICC.
*Hugs again* (Cant have too many of those right?!)
Posts: 5237 | From here | Registered: Nov 2007
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
Feel fit...sending my imaginary limo and driver over to take you away for an imaginary two weeks of lyme free living.
Where would you like to go?
What would you like to do?
Food...got to have some good food while you are out too.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
((((((kam))))))
Sammy, thank you so much! still waiting for my line..LLMD coordinating with PCP arranging first dose in hospital etc...hopefully tomorrow!
Will take you up on the offer of pm support..thanks again! big hugs back at you!
Posts: 3975 | From usa | Registered: Aug 2007
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
feelfit, how are you?
I've been thinking of you and praying for you. I hope that everything is going well with your new PICC and IV meds.
feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Hey Sammy,
thank you for asking! Just had my first dose at the hospital today and did fine. Home health came out this evening and brought my meds...so far so good.
How are you doing? Hope that things are going smoother for you too.
huge back and a big hug too!
Posts: 3975 | From usa | Registered: Aug 2007
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
OK, sounds like so far, so good.
Keep us posted. Praying for better days ahead soon! And, praying wisdom for your doctor.
Posts: 9931 | From Maryland | Registered: Dec 2007
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daisyrlb
Frequent Contributor (1K+ posts)
Member # 15686
posted
feelfit, thanks for sharing with us. Glad the first dose worked out, the home health person is coming out...yeah, so far so good. THAT IS GOOD!
Praying this is the beginning of a breakthrough for you!
Also, Dekrator48 shared above, "Have you read the post by Morningsong dated 3/5/2010 under the topic "God thought 3/1-3/7"?
PS: Thanks for always being there for us. We are here for eachother. We ARE Lyme Survivors!
Posts: 2188 | From Oklahoma | Registered: May 2008
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
I read it Daisy....very nice. And you're welcome re;being there...same to all of you. We are survivors.
TF thanks for your good wishes they mean a lot Posts: 3975 | From usa | Registered: Aug 2007
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