I am lounging in my recliner having my Myer's cocktail (Vit. C IV) drip into my PICC so I figure I may as well take the time to update my blog a bit, it has been quite a week! I started doing the cocktails last winter and always crashed with exhaustion the day after so I was hesitant to start them up again, but want to really boost my immune system at the same time so I figured I would try it again. Last Friday I had a horrible reaction to the IV and immediately crawled into bed for a couple of hours before I could get up. My entire body was shaking, I was freezing and I was just exhausted instantly. Once I was able to get up I had extreme nausea the rest of the night. Needless to say I was/am scared to try it again, but am hoping for the best this time, we shall see.
I called the pharmacy I got the IV from and talked with the pharmacist and we think I was probably having a hypoglycemic reaction because I haven't been eating much (fun reaction to a new medicine, no appetite) and it was probably going into my line to fast. This time I made sure to eat a full lunch and I will be stuck in this chair for 2-3 hours instead of 1, hopefully that will do the trick!
After I did my cocktail last Friday I noticed blood in the line I used before I flushed it with the saline and heparin, but I was able to flush it fine and still do my IV antibiotic that night without any problems. Sat. night I went to do my IV and my main line was full of blood and clogged. So my husband and I got the joy of spending Sunday at the ER having them break up the clot, luckily it worked and my line has been ok so far. I really didn't look forward to going to the hospital and having to explain why I had a PICC and that I have had it for almost a year etc., but they were really amazing and sympathetic and not doubtful of the treatment (at least not to my face) which was so nice!
Tuesday I saw my LLMD (Lyme Literate Medical Doctor). I knew I have been sliding backwards a bit since we stirred things up after my last appt. with a change up of some of the meds, but it is still frustrating and scary to have new symptoms pop up and old ones start to come back, reality of how much further I have to go kicks in. I feel like I have been in a pretty steady herx for the last month or so so we lowered the dose on one of my meds to hopefully get over this hump. The insomnia has been AWFUL so we played around with some things and (knock on wood) I have had a couple of nights of decent sleep!!! My night time cortisol levels are extremely high so that is most likely the culprit and I am supplementing that now and he had me increase what I was doing. No wonder I am wide away at 1am.
Overall it was a good visit and we have a plan of action for my next steps. We both feel I have Bartonella and will need to attempt to treat it again in the future. Right now I need to work out a plan with my Neurologist on my seizure meds before I can go there though because the Bart. meds interact with them and I lasted one week when we tried to treat before and I was knocking on death's door, didn't think I was going to make it through that one. I have no doubt I am no where near done with this journey, but am thankful there are still options for my treatment and have a Dr who is open to my thoughts on all of this when I have opinions and concerns!
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