I have CIDP (Chronic Inflammatory Demyelinating Polyneuropathy). This site is for me, and others with this condition or chronic fatigue syndrome, fibromyalgia, and any other condition that involves chronic pain.

Thursday, May 10, 2012


Things are changing.  I still don't know from one month to the next if I am getting a whole dose of the IV IGg or not.  This month I got it on time but short.  Last month I had to wait an extra week.  There is a national shortage of this.  They are finding out that it is good for a lot of disorders so of course more people need it and they can't just whip up more.  People have to give plasma.  They are paying people to do that - but it still isn't enough.

I started taking another new supplement.  This one is called Vivix.  It's made by Shaklee and is supposed to be an anti-aging thing that helps with DNA repair and has a lot of resveratrol and polyphenols which are really potent antioxidants.  What I know is that I feel better, have a bit more energy, and I am feeling a lot of things in my hands and possibly my feet that I have not felt before.  Is it healing?  Don't know yet - I'm scheduled for EMG studies in June.  So we'll see.

Anyway, my infusion doc freaked out about my triglycerides and told my neurologist that I was going to die if I kept taking the Solumedrol so he stopped that.  I had another dose and a half so I continued it until I run out this month.  I am taking a calamarine oil supplement to get the triglycerides down and it was working - they were 1700 last time and only 900 this time - just needed another couple of months on the calamarine oil.  She just doesn't look at trends, only what is in front of her.  She should have freaked out when they were over 5000! 

She was freaking about my liver enzymes a few months ago - they were up a few points over the "normal".  I had been taking quite a bit of ibuprofen which is hard on your liver - pain kind of makes you want to take stuff to make it go away.  So I'm not taking so much now - the pain is less now.  And I took Liver DTX (another Shaklee product) for a couple of months and guess what - my liver enzymes are now back in the normal range.  So now she has nothing to say about that.

Same thing for my kidneys.  She is constantly pestering me to take a blood pressure medication because I am diabetic.  But I don't have high blood pressure.  I take BP Manager made by Enzymatic Therapy.  So my blood pressure runs around 122/68 or thereabouts.  Not bad for an overweight 62-year-old.  And every once in a while, my kidney number goes up a couple.  So I take a kidney detox.  It's been quite a while since I did that.  Can't remember the name of it - you only do it for a month and then quit.  But she freaks out about that when it happens and when I get it back to the normal then it's like it never happened.

Oh well.  Things are kind of looking okay for the time being.  My hands just feel like they are asleep.  They are stiff, and I have to really be careful - I have lost a lot of dexterity.  I remember when I was first diagnosed - Dr. Robertson said we couldn't do anything about my feet but we were going to try to save my hands.  At the time - I did not have any symptoms that I could feel, although the EMG results said there was already damage.  12 years later, and all the drugs and infusions and fighting with doctors and insurance later - and how much ground I have lost.  Mostly because of all the fighting and not being on a consistent treatment plan - and long stretches when I wasn't on any treatment at all, and then treatments that weren't consistent, or ones that didn't work.


No comments:

Post a Comment