Friday, November 12, 2010

Trying New Treatments and Wondering...

I'm having a really bad week.  I'm feeling so, so, so terrible - sore throat, severe aches, and total exhaustion.  And I am really missing Ken - both his help and his company.  As usual, I'm trying to figure out WHY I feel so terrible.  The problem is that I've tried too many new things in this past month.  I'm usually more careful to try one thing at a time and give it some time.  So, here's a rundown of what I've tried and what I think its effects have been:

On October 16, I started taking 1000 mg of Vitamin D each day.  Unless you've been living in a cave (in which case you really need vitamin D!), you've probably heard at least a small percentage of the studies on the miraculous vitamin D.  It seems that every week, there's a new study out touting its benefits.  Much of the research has focused on its beneficial effects on the immune system and the link between vitamin D deficiency and all sorts of immune disorders.  All of the studies say you can't get enough vitamin D from food or sunshine alone (and I can't be in the sun at all right now because of my Lyme meds).  My recent lab work showed my vitamin D levels right at the lower edge of normal, so I decided to try it again.  I tried it once before and it upset my stomach, but this time I seemed to tolerate it better.  I started Jamie on it, too.  It's hard to tell (more on that in a minute), but I think it is helping.

Just three days after starting vitamin D, I added a new supplement, Samento, to my Lyme regimen.  I read a study where Samento and another supplement were more effective in the lab than doxycycline (antibiotics) at killing Lyme, plus I'd heard good things about it from Lyme bloggers.  I felt slightly crashed for a few days, then had the best week I have had in many, many months!  It's hard to tell since I started the vitamin D just a few days earlier, but it looked like a brief herx reaction, followed by improvement!  The last week of October, I was almost completely symptom-free and felt great.

So, why did I mess with that success??  Yeah, that's what I've been asking myself for the last two weeks.  As you know, on November 1, I got a flu shot.  I have to say that I am really regretting that.  I've been badly crashed for two weeks now, though I'm not sure it's all due to the shot.  However, both of my sons got flu shots and had no reaction at all to it.  I suspect it affected me worse because my immune system dysfunction is worse than theirs.

This past Monday, I started Immunovir, a prescription medication that is supposed to help correct immune system dysfunction.  I realize now that I shouldn't have started it while I was still feeling bad, but I thought it might help normalize my immune system again and pull me out of this crash.  Instead, I have felt even worse this week, but now I don't know if that's because of the Immunovir or still because of the flu shot (or a combination).  I checked with my doctor and backed off the dose a bit yesterday, but I'm still feeling horrible, so I think I need to give it up completely until I get back to my normal baseline, so I can accurately assess its effects.  What I'm really worried about is that the flu shot may have caused a long-term relapse like I had last winter (which is why I got it in the first place!!).

OK, so that's my story.  Now it's time to go pick Craig up and take him for an MRI of his knee.  He hurt it playing soccer yesterday and had to go to school on crutches this morning.  So, he has an MRI tonight, then an appointment with an orthopedic specialist on Monday morning.  Did I mention I miss Ken's help??


Baffled said...

That is a toughie. I've never had trouble with vit D. I've also not seen any improvement taking it either. I did have lots of trouble with some cheap B12. There was something in the supplement that didn't agree with me and made me quite ill. As soon as I switched brands I was fine.

However, I did get worse after the TB tests which are an immune system challenge. The old fart of a doc should never have given me those. That was back in August and I still haven't returned to the level I was at in July. That is why I am so leary of getting the flu shot. I don't need another immune system challenge. My system can't handle it. I always feel crappy for a day or two after the shot and that is back before I got sick. I wouldn't be surprised if it was the shot that got you so sick but I'm not a doc. Here is hoping you are feeling better soon.

Shelli said...

I'm so sorry you've been feeling so bad lately. It's terrible when you keep waiting and waiting and waiting to feel better -- just a little breather would be nice.

I hope your misery is short-lived. Does Ken get home soon? Just knowing my husband isn't around for a day or two is enough to cause me to flare.

Hang in there! Hugs!

Never That Easy said...

Gosh I'm sorry. I know how much it sucks to be sick, and to be questioning whether or not you made the right treatment decisions. Try to take it easy on yourself, and be as well as possible. Hugs from far away.

Toni said...

Sue - I felt like I was reading about myself as I read this. I've lost count of the number of times I've told myself to only try one new thing at a time and then just been so excited at the prospect of something new that could help that I've started multiple treatments at once. All this is by way of saying don't feel down on yourself for doing that -- I'll bet everyone reading this has done the same!

It sounds like a good idea to stop the Immunovir for a while since it's a major new treatment. You don't want to cross it off the list prematurely if what you're going through now is still a reaction to the flu shot.

I'm so sorry this is happening when Ken is out of town. Hang in there.

Sue Jackson said...

Thanks for all your kind words, support, and encouragement. It really is helpful just to know I'm not alone.

Toni - You know me so well!! I was feeling very down yesterday and blaming myself. Thanks for the lift!

I quit the Immunovir yesterday and am hoping today will be better...but then again, that would mean its the Immunovir affecting me negatively, and I'm so hoping it will help. We'll see...


Renee said...

I, too, have done the same thing...trying more than one thing at a time. So sorry to hear you are struggling with so many symptoms keeping you down and out. Hope Ken gets home soon!

Anonymous said...

So sorry you are feeling so rotten, Sue. I too think it is from the flu shot. I would never get one myself, especially after the report about them on Jesse Ventura's Conspiracy Theory on TruTV. Don't mean to scare you, and most of my friends do get the shots. I keep trying to educate them not to anymore!

Despite that one theory that vitamin D is a culprit in CFIDS, I take D3 daily and try to get 10 minutes of sun each day too.

Speedy recovery, Judy

dominique said...

Okay. Have you been reading my journal! ha ha. I have been thinking I need to slow down on what I have added this past month. For the past 2-3 weeks I have been running low grade fevers, chills, aches, nose problems, twitching, you name it. Today, a stomach ache was added. I realized I might have let go of some stuff that was working well and added some things that weren't working so well. Sigh...

I think Renee and Toni are right. We all do it. We so desperately want to feel well, and not just for a day or two.

I'm so sorry you are feeling so bad and are dealing with it and the boys alone. I know how great of a help Ken is. He is an awesome guy!

I hope things start to settle down and get back to normal for you.

Sending you hugs.