Wednesday, November 28, 2012

Overwhelming Follow Up

It seems like every follow up here lately has left me feeling extremely overwhelmed.  Today's visit was absolutely no exception.  I arrived a little bit before 9 to fill out all appropriate paperwork and was called back at 9:15.  I was in the the PA and my LLMD for at least an hour.  He talked about his most recent ILADS conference.  I love and hate when he comes back from those conferences.  I love it because he usually brings back with him a new piece of information that might help solve the puzzle of my illness.  I hate it because I usually leave extremely overwhelmed by all the information he gives me and usually it involves a change in treatment plans.

The antibiotics are the same.  The days I'll take them - VERY different.  Over the next six weeks, I"ll be on five different pharmaceuticals.

  • "M" will be taken twice DAILY instead of pulsing like we've been doing. no time off unless I'm struggling.
  • "Z" is better taken 4 days in a row in order to get blood levels to a therapeutic level - so "Z" will be taken twice daily Monday through Thursday and I won't take any on Friday through Sunday.  Two weeks on, one week off, two weeks on, two weeks off. 
  • "F" will be taken on the 2nd week of antibiotics - twice daily on Friday and Saturday only.
  • "O" will be taken on Monday, Wednesday and Friday.  Two weeks on, one week off, two weeks on, two weeks off. 
  • "N" to be taken on whatever day I'm taking antibiotics which will be daily (unless I go a "M" respite)

In addition to these, I'll be on a multitude of supplements. There are probably 15 bottles of supplements that I'll be taking 2 or 3 times a day.  There are also about 10 bottles that I'm not sure if I'm supposed to be on or not so I sent an email to my supplement lady.  A lot of them are detox remedies so I feel like I should probably be on them with all of the antibiotics I'll be on, but - adding an additional 10 items twice a day in combination with everything else - seems very overwhelming.

Over the last six weeks, my fatigue level has sky rocketed.  Most nights I'm in bed by 7pm and if I have to work -  I'm rudely disturbed by the alarm at 5.  However if I don't have to work, I sleep a good 12 hours if not more.  One night I went to bed at 6pm and slept until 7am the next morning. I didn't even realize I had slept all night and wondered where my husband was when I got up.  It wasn't until I made my way to the computer and saw AM on the time stamps that I realized I had slept 13 straight hours.  That same day - I napped an addition 3 hours twice and then slept an other 12 or 13 hours the next night.

I've also had spells of dizziness.  Most of the time I attributed it to a new pharmaceutical that I'm supposed to be on to increase my sodium levels.  My Sodium levels are in the toilet again.  So I've got to try to see if I can get those up over the next few weeks before my next set of blood work again.  One set of liver enzymes were elevated from my last set of labs, but not out of the normal range.  Then the other set of liver enzymes were elevated out of range.  We all think it's due to the antibiotics and we're keeping an eye on it. A few of my new supplements are to help support liver function.

Sorry I've been so quiet.  I've had a rough month and I just tend to get really quiet when things get really bad. 

Saturday, November 24, 2012

Black Friday Fun

My husband & I have apparently started a new tradition.  Last year - we went to Carolina Beach on the day after Thanksgiving.  This year, we did the same thing.  Look at our view at Fort Fisher North Carolina.

Sunday, November 18, 2012

Flagyl kicking my hind parts

My day yesterday went like this:

Wake up.
Watch Carolina game from night before.
Get online.
Eat something.
Take Flagyl.
Get dressed.
Go out with hubby.
Eat again.
Smell something rotten.
Consider running to the nearest toilet to vomit.
Hold it back. 
Go home.
Eat again.
Run to the bathroom.
Feel lousy.
Take a two hour nap.
Go buy water and gatorade.
Eat dinner.
Go home to take Flagyl.
Eat again. 
Run to the bathroom.
Lay down and feel nauseated while watching tv with my hubby.
Give up at 8:30 and go lay down.

I probably actually ran to the toilet about 10 times yesterday.  Flagyl really is kicking my hind parts.  Today, no flagyl and I'm still running to the toilet. I suspect it will be that way until tomorrow.  No antibiotics this week.  This week I concentrate on detoxing.

I feel badly, but I know that the Flagyl is kicking the cyst form of Lyme.  I know the Mepron is kicking Babesia.  Today I plan to chill. Big time.  Resting for Jennifer - because this week, I work 3 days in a row (something I haven't done in a while - and I've tried to avoid it, but we're closed on Thursday and Friday and I want to help out my colleagues - so I'm working 3 straight days). So today, I chill.

Saturday, November 10, 2012

Still kicking

This was an antibiotic week - so it's been tough for me.

I've had a lot of joint pain (especially in my ankles and feet).  I've also had a lot of cognitive troubles.  It's been tough even understanding the most simple concept which has made me a little ornery.  Frustration sets in when I don't understand something.

As you know, I've been selling bracelets. Until recently, I've pretty much sold them to people I've known online for a while.  However I put them up in a Holiday Auction for to sell.  

I got orders from people I've never met so I decided it was finally time to set up a pay-pal account for the sale of the bracelets.  I've also had people ask me how they could send me donations to help with the cost of my specialist.  This was very kind of people, but I've always said no thanks because it would have involved people having my address to send me money.

So if anyone is interested in buying the the bracelets - let me know in email - LIVINGLYMELIFE @ GMAIL.COM (put it together in lower case).  I need to know which size you are interested in. I have both 7 inch and 8 inch.  The silicone bracelets say We Fight Lyme Together.  I have wanted to sell them for a really long time, but have always broken out in a rash.  I did major research and found a company that eliminated the product that I was allergic to - and ordered from them.  When they came in, I wore them for days and never broke out!  I was thrilled.   Then I realized the 8 inch bracelets were way too large for my wrists.  Someone offered to go in with me and buy some for cost.  We bought them in the same order so they'd be cheaper for both of us.

So in any case - if you're interested in buying some - let me know.  I'd be happy to take payment via pay-pal.

PS: Look to your RIGHT on the blog itself and you'll see the Buy it now button for PayPal - you can buy it straight from the blog (well it will carry you to another site, but you can choose from buying 1, 5 or 10 - with 7 inch or the 8 inch). You don't have to be a paypal member to buy a bracelet or 5 or 10 - Once you click the Buy it Now button - you will be carried to the invoice.  It will ask you if you're a member, but underneath it will give you an option if you're not a member to pay with a debit or credit card.

Price for buy it now on the blog:

3 for $12 (plus 2 for shipping)
5 for $20(plus 2 for shipping)
10 for $33 (plus 2 for shipping)

Friday, November 2, 2012

Extremely tired

I thought this week would be greatly improved since I'm not on the antibiotics this week.  While it was "better" than the weeks I was on them - it wasn't "greatly improved."  I almost fell asleep on the way home yesterday 3 times.  Not to worry folks  - I'm fine.  I went to bed about 6:30 last night and slept 12 almost straight hours.  You see at about 6pm - I started having severe ankle pain and hip pain.  SO I put on my ankle support, took some Claritin for itchy eyes and made the executive decision to go to bed early.  About 11pm, I woke up hurting from the support - so I took it off and went back to sleep.  Woke up feeling a little refreshed so I cleaned up my office (dusted, cleaned the windows and vacuumed) and put my sheets in the wash.  I figured at least if I started feeling badly later that I got at least TWO things accomplished today. 

Now I'm winded and am going to rest some more.  I don't have to work today so I will rest and try to straighten the house up.  I'll do one room at a time and if I "wipe out" early - so be it.