Well I definitely crashed from my day of outings. Two in one day, more time out of the house than I usually do in a week. I'm much much sicker today. I feel weak and fluey and my head feels full. No big surprise really. At least I got to talk to people at the pot luck and saw a good movie. Was it worth it? Well I think so even though it doesn't feel like it at the moment. I hate M.E.! I hate being sick!
I saw my Nurse Practitioner (NP) this morning to follow up on some bloodwork.
I am now just out of the anemia zone again (121) - 120 is the low end of normal, so that's good news. However, my iron (ferritin) level dropped despite all the iron I've been taking??? I'm now down to 7 (10 is the lowest end of normal).
The most worrying result was my WBC had dropped again to 3.1 which is definitely leukopenia (4 or 4.3 are considered the low end of normal). My neutrophils were 1.4 which is mild neutropenia. They discussed it (my NP and her supervising Dr.) and decided it wasn't anything to worry about because they believe it is just part of the ongoing low grade infection I have related to M.E. My WBC drops, then it goes up, then it drops. It's been going on for years.
Not that anyone knows what the infection is in particular, which to be honest, really bothers me! We will check the WBC again in a few months to make sure it doesn't plummet further. If it does, I will have to be careful about catching and fighting off infection. I mean I do have to be careful, but I'm not in the zone where an infection will hospitalize me. The only finding today was my continued swollen glands, especially on the right side of my throat and "it looks viral".
I am also being sent for an MRCP which is basically another MRI scan that focuses specifically on the pancreas and the related ducts to see if they can pinpoint what is causing issues there. To rule out cancer again, but also possible strictures or stones or evidence of pancreatitis etc.
Despite feeling awful, when we checked my blood pressure, it only dropped 10 on standing after 2 min. She did prescribe me florinef which I'm considering trying as I occasionally faint - although I'm starting to wonder if that is more the POTS than the NMH. I know for sure I have both despite the fact that I can't always call them up on command in the Dr.'s office.
So glad you got out! And so sorry you are paying for it now. It just sucks, doesn't it?
ReplyDeleteThe good news is that Florinef treats BOTH NMH and POTS, though it rarely works for adults (the bad news). But it does work for some, so it is definitely worth a try! A couple of tips from our experience:
- You are supposed to start very low and gradually work up on dose (start at a half tablet and add another half each week or so) and you may not see any results at all until you get to the highest dose (generally 0.2 mg or 2 pills, though some kids go as high as 0.3 mg or occasionally 0.4 mg). So, don't give up too early - it may take a month or more to get to the full dose and give it a full trial.
- It does cause considerable water retention, but that's what it's supposed to be doing! It works by helping your body hold onto more salt and fluids, thereby increasing blood volume and improving NMH and POTS.
- Since it works that way, it can only work with HUGE amounts of salt and fluids. Whatever you are ingesting now, double or triple it. My son drinks the equivalent of 3 liters of Gatorade a day (we use Vitalyte) and also takes 2-3 Thermotabs (salt tablets) a day, in addition to adding lots of salt to his food.
Hope that helps - good luck!!
Sue
Live with CFS
Oh, thanks for this great info Sue...we weren't really sure how to start me but we were going to go with my old M.E. specialist who always says "start low and go slow", but it's great to have advice from someone who's tried this...and go to know about the POTS....if it helps with both, that's what I need. To be honest, I'm pretty nervous to try it now that I fianlly have a chance to treat the OI. It might take me a few weeks to 'go for it".
DeleteSo sorry to hear about the crash! It's so terrible that we have to pay a price to enjoy the slightest amount of normalcy and keep from losing our minds! Regarding the infection, have you considered getting tested for Lyme? I started with mono and never even stopped to think about Lyme but apparently it was inactive and it flared up when the mono got really bad. Or maybe if you have an experimental enough doctor, could going on antibiotics for a bit to see if anything happens? Going on antibiotics without actually knowing you have an infection is always a huge no-no, but might be worth it in such a critical condition, especially since the only reliable test for Lyme is a bit expensive. Just some thoughts. Hope you have a quick recovery!
ReplyDeleteDolce Vita, I've actually been tested for Lyme SO many times. That being said, I know there are LLDs out there and I'm not sure if I've had the "other" lymes test. I'd be really curious to know as I was working in the woods when I got ill with Mono (sounds familiar eh?)
DeleteI don't think there is any way my NP would give me antibiotics without a clear infection (e.g. positive test). Thanks for sharing you thoughts/ideas...I really appreciate it. I hope the Lyme treatment is going well for you and improving things?
Hi Upnorth, Just getting to the MRI place and going through the machine and other tests must be exhausting and even crash producing. Simply having to change into a medical gown is already takes too much energy. It always helps to go to a place one had been to before, so you know the layout and extent of walking. Well, hope you are doing okay, you know what I mean --- as okay as you can be. Leah
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