Tuesday, April 27, 2010

Paint May Lyme Green!

Paint May Lyme Green!

I have been really busy & feeling really good.  Haven't taken Lauricidin since the bad "herx" or whatever it was.

We are working on getting everyone to change their profile picture to a lime green profile pic to raise awareness for Lyme Disease Awareness Month of May.  So if you have a Facebook, please do so.  There are many ways you can help other than facebook.  Please click on the link above that reads Paint May Lyme Green to see what you can do. 

Right now we are planning a HUGE - let me repeat - HUGE rally against the IDSA's recent decision.  You can read more about the IDSA's decision here .

If  you are interested in the rally, please contact me, tell me where you are located & give me your name & contact info.  The date of the rally is to be announced.  If you are on Facebook, please join our group IDSA Denies Proper Treatment for Lyme Disease so that you can stay up to date on the rally & maybe help organize in your area!  The HIV/AIDS victims of the 1980's had to rally & come together in huge numbers to make a change & get proper treatment, and we are no different.  Even if you are too sick, you can still have your friends & family attend.  No matter what condition I am in that day, I will be there!  Even if I have to rent or borrow a wheel chair & be wheeled around.  There is no way I am missing it!

xoxo!  Feeling good lately.  Just wish my muscles weren't so weak.

Wednesday, April 21, 2010

Drum roll please . .. .

Well, it's official.  I am CDC & Igenex NEGATIVE!  Crap.  There was no celebrating, that's for sure.
Here is what the test said:

IGM Western Blot:
31 IND
39 IND
41 ++
58 +

IGG Result:
31 IND
41 +
45 +
58 +

Multiplex B. Burgdorferi Sample: Serum
(PCR test)
Genomic - B Burgdorferi: Negative
Plasmid - B Burgdorferi: POSITIVE , Confirmed by Southern Dot Blot

Whole Blood Sample:
Genomic - B burgdorferi: Negative
Plasmid - B burgdorferi: Negative

** What throws me is that it says under this last section:

"POSITIVE: Indicates that B burgdorferi specific DNA fragments (plasmid or genomic) were detected in the sample." It goes on to say, "Sample is considered positive if either genomic or plasmid is positive."

I have been feeling quite ill for 3 days straight.  I layed in bed all day Sunday, was in & out on Monday and went to dinner with an out of town guest that evening.  Then felt really, really sick yesterday.  Today was not too shabby.  I was able to get a few loads of laundry done & cook dinner.  So I wasn't feeling so bad anymore.  Having some issues breathing.  I just keep feeling like I have to deep breathe all the time.

Just ordered some more Bicillin.  This time one of my docs was able to find it for me for $525 including overnight shipping right to my door, nice & cold.  Saved us $175 so Hubs didn't have to scrape too much together.  I usually pay about $700+ including shipping.  So good news.  And since this has been my best month yet, the doc said to go ahead and do 5 more weeks of it & then we'll re-evaluate.

Oh well.  Maybe we'll do IV later on down the road. . .. maybe I won't have to.

Thursday, April 15, 2010

Wow, it's almost been a week since I posted!

I guess that's what feeling good does to ya.  Keeps you off the computer.  That, and we just went from 3 computers down to 1.  Hubby broke the hard drive in the laptop YET AGAIN!  UGH!

I should have my Igenex test results back tomorrow.  Cross your fingers for a positive for me.  I don't have a good feeling about it.  I sure hope my gut is W-R-O-N-G.  I have no idea what move I will make if I am not positive.  I guess we'll take a 4 hour ride up to Arroyo Grande, CA & see the ND up there that works with Dr. Harris.  Or stick with my regular LLMD.  The doc I saw last takes my insurance, so if I am positive.  I am GOOD.

Started up the Lauricidin again and not sure if that's what's causing my weakness (herx) because I have been SUPER weak yesterday & today.  Other than that, still feeling great.  It's lovely.  Sleeping like a dream with NO, let me repeat, NO sedatives or benedryl.  Just a touch of Melatonin at night.  It just makes me yawn within 5 minutes & makes me sleepy.  Doesn't keep me asleep.  But sleep hasn't been an issue lately.

Not sure if it's the new supplement I started, but this has been the best past 30 days I have ever had.  So I ordered more.  YAY!

I tested "high" for Mycoplasma.  But I don't really have lung problems.  hmmmmm......  Tested negative for Babs & Bart.  But all were through Quest, so don't know how reliable that is.  I don't have the usual Babs & Bart symptoms.  That I know of anyway.

You will be hearing from me when I get the Igenex results back.  I hope everyone else is hanging in there. :) xoxo

Oh and P.S.  I have been off all diet restrictions for the past 2-3 weeks.  And haven't had any repercussions (yet).

Friday, April 9, 2010

I'm awake since 2:45am...

I think I've forgotten to mention in the past that not only have I been feeling better, but I've also been able to sleep & my muscle twitches have pretty much subsided. I'm still in pain at the end of the day from not laying around, but I'll take it.

But no sleep tonight :( Went to sleep around 11:30pm, woke up an hour later (can't remember why) & then woke up again at 2:45am. I took an ativan at 3am but I'm still awake. And now I'm upset because I woke up hubs for some emotional support (I rarely disturb him) because I have a weird sore throat & headache, & my eyes ache/burn. When I can't sleep because I'm not feeling good, it really bothers me. I should just pray. But I need to get on my knees to be able to concentrate enough and it's too freaking cold in this room.

I got up & went into the office to lay on the futon with a little pillow, little blanket, & my little chihuahua to keep me warm. I guess my sniffling & looking at Facebook on my phone was bothering the husband. He didn't take too kindly to me waking him up. So I came in here. Brrrr... I'm not tall enough or strong enough to shut this giant window.
Sent from my BlackBerry® smartphone with SprintSpeed

Thursday, April 8, 2010

I just don't get it.

I'm still doing well.  And functioning with little symtoms.  I'm going to the beach tomorrow for heaven's sake!

Tuesday, April 6, 2010

Yesterday two of my nieces came to visit me.  YAY!  The eldest is going to school about an hour from me & she was up in the Bay Area for spring break & brought my youngest (from my sister) down to visit for her spring break.  She will be leaving Friday & going to my parents who will take her to the airport on Saturday early to fly back to the Bay.  It was so good to see them.  We all went to dinner & then they both spent the night.  I slept in too late to see the eldest leave to go back to her apartment.  *Sigh*  It's nice to have them around.  And since I am not feeling too badly, and the sun is shining, hopefully hubs & I will be able to take my niece to the beach.  It supposed to warm up to the 80's here on Wednesday which means 70's at the beach!  So now I must do the pile of dishes in the sink, eat breakfast, take a bunch of supplements and go for a walk in this sunshine!  It was rainy & gloomy yesterday. 

Oh quick little story.  My niece wanted to give me my B12 shot last night and I said ok, since it's only a little insulin needle in my belly.  Well, she says, "Auntie, I don't want to hurt you!!"  She was nervous, she stuck it in, & immediately pulled it right out.  We laughed so hard!  So I ended up sticking it back in & let her push on the plunger.  You had to be there.  It was funny!

Monday, April 5, 2010

Something strange is going on here. . .

So I had 14 glorious days straight of feeling "good" (my last record was 10 consecutive days) and the last two of those days were almost like not having this stupid disease at all.  I even exercised a bit on my mini-tramp.  Then BAM!  My "Aunt Rosie" came to visit and if you are a woman with lyme you know what happens, within a couple of days you are sick again.  Classic lyme cycle.  So I was sick one day and then felt really bad the next (yesterday).  Decided to take an 800mg Motrin to see if would do anything because it was Easter & I wanted to go to my sis-in-law's new pad for a BBQ.  If I'm sick over there, I can just lay on the couch & be sick, no big deal.  But the Motrin actually did something.  Took my flu-ish/hangover feelings away.  Not completely, but I was definately not miserable, and even though I layed on the couch, I had a good time.  So the Motrin totally helped (never worked before), but it left me with my stomach all jacked up for the rest of the day.  Hmmmm.... maybe I'm onto something.  Take 800mg Motrin every day??  But what about my liver?  And the fact that I am on high dose antibiotics?  Then today, I'm sick, but nothing close to what I am used to.  NOTHING.  I babysat a 1 year old for 2 hours (jacked up my back doing so), AND I managed to clean out & organize my pantry.  On a SICK day!!  Okay.  My good days keep getting "good-er" (yes, I know that's not truly a word) and my bad days are getting "good-er".

Maybe I'm getting GOOD-er!!!!!!!!  (Oh ya, I've blown my whole gluten free, sugar free diet again).  Unless I notice any issues, I'm staying this way.  It's easier to eat.

Friday, April 2, 2010

Goofing off in between takes for the Lyme PSA

Wow!  Yesterday was a great day.  I met some great people and had a great time.  We worked our tails off for 7 1/2 hours and it was a long day, but so worth it.  Can't wait to see what happens in the end.  May is Lyme Awareness Month & we've got to do our part to spread awareness.  Please go to Lymenaide and see what you can do to help the cause!!

Thanks Ashley, Nani, & Z.S. for being so helpful & patient with me yesterday.  It was such a great time and I have been having so many good days.  Today is day 14 in a row!!  xoxo