AJVDK Posted April 14, 2007 Report Share Posted April 14, 2007 Hello All,Well I have not been around much as I am just not up to it. I am having a really hard time at fighting, and feel lately like I am losing the battle. As some of you know I have been having a hard time with my PICC. I am on number #4 this year already. The doctors, nurses, all keep saying they never seen anything like it, they are thinking now my system is just so weak that my body just can?t fight. I now have cloth dressings as I broken out, and my arm is so beaten up that was the last option, although they didn?t want to do this as I had Sepsis three times already this year. So I am now having a home health nurse come to the house three times a week, to changes the dressing. I feel like I al losing the fight. I am in so much pain, from Joint pain, and headaches, due to trying to treat the lymes, the pain patches, and pain shots seem not to even be working. As for the POTS, I feel like I am going to pass out every time I stand, my b/p is always too low, today even after the fluids, my b/p only got to 98/67, and my heart rate laying down in bed was 110?s- 120?s. (At least I am not pacing for once!) I been to the doctor?s and there is little and of them are saying anymore. They are already talking about when I get sepsis this time they want to put a port it. I am to the point is it worth it? Although two days with out fluids and I am unable to do anything and with in 3 days I would be in the hospital. As for the lymes, I am not sure if it even worth treating. I just feel worse all the time, which I know is a good thing as it means the meds are working, but, what about a quality of life. I even thought about going off the IV abx, but I have ulcers, and I can not handle the pills I take now, and before the abx tore my stomach up. I couldn't sleep tonight, and finally though I could handle getting to the computer for a few mins. Sorry for venting, I just know here you could understand. I hope you all are doing well! Quote Link to comment Share on other sites More sharing options...
nadine Posted April 14, 2007 Report Share Posted April 14, 2007 Just wanted to say hello and sorry things are so difficult. You need to be able to vent these feelings and I hope it is comforting to know that the members here care. We don't all have the same exact health challanges, but we come here for information and support. Well, I should speak for myself, but that is why I come here. That support can often be just what we need on a bad day, even if there are no wonderful words or wisdom. Just a hello, we care.It seems so difficult to keep on fighting at times, but hopefully the encouragement and support here keeps us going. Take care. Quote Link to comment Share on other sites More sharing options...
Rachel Posted April 14, 2007 Report Share Posted April 14, 2007 Oh dear, Amy. I'm so sorry to hear that all of the troubles are continuing. Thanks for sharing what is going on. I'm glad you feel comfortable enough to let us in to your world a bit. You are free to vent!I don't have any great words of wisdom or advice, I just wanted to say hello and offer my support. Thinking of you and sending big hugs,Rachel Quote Link to comment Share on other sites More sharing options...
pat57 Posted April 14, 2007 Report Share Posted April 14, 2007 Ditto- what Rachel said. Wish we could do more, but knowing you not alone can be immeasureable help in bad times.(((amy))) Quote Link to comment Share on other sites More sharing options...
morgan617 Posted April 14, 2007 Report Share Posted April 14, 2007 I am sorry you are feeling so punk! It's hard to see the sun sometimes amongst all the clouds. Will hope this PICC works better. It sure doesn't help that most of us have crummy veins and sensitive skin.Am keeping you in my thoughts and prayers sweetie! mamamorgan Quote Link to comment Share on other sites More sharing options...
mom4cem Posted April 14, 2007 Report Share Posted April 14, 2007 Sorry to hear of your troubles. Wish I could do something more than offer support to help but I can't. It certainly is hard to see the light at the end of the tunnel, but it's there. I'm sure all the "die off" from the antiobiotics just affects every part mentally and physically.I hope brighter days are ahead soon. Quote Link to comment Share on other sites More sharing options...
P SUDIK Posted April 14, 2007 Report Share Posted April 14, 2007 I can't stand that you are so ill and dealing with all this,please know that there others out here that really do care. I will keep you in my prayers,Hugs, Pat Quote Link to comment Share on other sites More sharing options...
DancingLight Posted April 14, 2007 Report Share Posted April 14, 2007 Amy,For me, treating the Lyme has been one horrible series of herxes...I had my first 'window' after nearly a year of treatment. My quality of life was so low before treating it that I feel I have to try treating it...As for the PICC line, I had one in before knowing I had Lyme and it caused tremendous discomfort and pain and I could not sleep on that side. I also got excruciating chest pain if I tried lying on that side and near fainting b/c it was pinching. After finally figuring out that I may have Lyme, my ANS doc suggested that perhaps I had so much inflammation and irritation in my veins that I could not tolerate a PICC line. I don't know if this is a possibility for you or not.I also know that some antibiotics are easier on the tummy than others. Also, if you want to stick with IV abx, could you try something like Bicillan which stays in your system for several days--which would mean that you would just get a temporary IV each time and not have a PICC or port?Just throwing some ideas out your way since you feel caught b/w a rock and a hard place.Also, with the fluids, sometimes we can reacha point where they are not longer helpful...I was scared to stop them as I was doing them every other day, but I found that I no longer got a 'boost' from them and we pulled the PICC and stopped the fluids. I actually did better without them. Now, I just do them as needed at the Medical Treatment Unit at our hospital. When I am in 'crisis mode' I get them up to three times a week and just get a new IV inserted each time. I have crummy veins, but honestly the good nurses can get a vein. Or phlebotemist can come and put a heat pack on to raise one...If I have to go on IV abx, I would rather just use up all my veins with individual IVs than get a PICC again! I know the Lyme treatment seems never ending, and it seems like there is never going to be a light at the end of the tunnel. I'm still afraid of that. Very afraid. The treatment is horrible and it wreaks havoc on ANS stuff. I have been trying to find a balance b/w amoutn of abx I am taking and keeping it so that I can do a little activity each day...and not be in the hospital. It takes a great deal of trial and error and tweaking...The best comparison I have heard is that treating Lyme is a bit like chemo b/c you are literally killing off all this stuff and dumping huge amoutns of toxins into the body much like chemo does. (NOT minimizing anyone who has or has had cancer).Well, I must try and get a nap...I hope you can find some solutions and perhaps have your Lyme doc do a bit of tweaking to make you more comfortable and balance treatment so that you are still working towards treating the Lyme without being at your wit's end. Remember too, that it can effect your mood. When I am herxing I am much more depressed and anxious.Hope this helps...just trying to brainstorm a bit...I haven't been on the board much at all either for the same reason as you...Lyme, lyme, lyme...Emily Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted April 14, 2007 Report Share Posted April 14, 2007 So sorry things have been so hard for you. I am thinking of you, Amy! Katherine Quote Link to comment Share on other sites More sharing options...
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