My laptop has been down . ..

Well, my husband broke the hard drive in my laptop yet again so I have been without one for over a month.  I haven't been feeling so great, so  I haven't been on the computer much.  That would explain my absence from my blog.

A recap of the past couple of weeks:

Got sick about 4 days before the fundraiser/awareness walk so I couldn't make it.  My husband & his family & a couple of friends went anyway.  My dad was out of town visiting his mother & I was feeling so sick that I had my mom come here to take care of me instead of going to the walk.  Nicest part of the walk was one of my BFF's learned a lot about Lyme Disease and I think that helped her to understand me more.

I never heard from the walks coordinator after that, so I didn't get any help with my fundraising.  Oh well, you win some, you lose some.

So I ended up spending 8 days in bed.  That miserable hangover feeling.  It sucked.  And then we had the garage sale on Saturday.  I started to feel better a few days before & on that day I did well.  We made $537!  It was enough to pay for a month of one of my antibiotics.  I need to figure out more fundraisers though because I need many thousands of dollars!!  Doing another garage sale this weekend.  Not as much stuff, but I am hoping some how some people will donate more stuff by tomorrow.

True2Life donated one of their 8 Day Liver Detox Kits to me.  That's cool!  I felt great after my last detox.  I was going to start today but started having pain in my lower right abdomen.  Could be my appendix, so I am holding off on the liver cleanse until pain is gone.  Appendix is attached to your large intestine & this cleanse on the 2nd day brings on a lot of bowel movement.  So . . .. we wait a bit.


I went to see my doc 2 days ago in his Beverly Hills office.  I like him. He's not my LLMD, but he takes my insurance.  He's keeping me on Bicillin & adding Biaxin for Mycoplasma.  Doing a week trial run to make sure it doesn't cause tinnitus like zithromax did.  The tinnitus showed up after 2 days on Zithro & stopped after I stopped the medication (3 days later).  It can be permanent & it was very unpleasant.  I forgot to talk to him about how to treat the Q Fever which can become chronic also.  Doxy?  UGH!  I couldn't take that.  Make me drop weight like a wrestler or a super model.


So we are waiting and seeing.  I am happy to be attacking my known co-infections now.  Maybe this is the boost I need.  Cross your fingers that I can tolerate it.  Doc also took some blood work because I have been having abdominal pain & he said I should be having monthly blood draws.  I will go to him monthly, which is fine because my insurance pays for it.  It's a long drive, but we're going to stick with going to his Malibu office so we can see the ocean at least.  It's lovely. 

I am happy to report that my Malibu/BevHills doc was able to find me lower cost Bicillin!  YAY!  I was paying $700 for 10 injections at McGuff.  I am now paying $525 for 10 with free overnight delivery via courier to my door!  WestAid Pharmacy in LA.  The Biaxin was going to cost me $269 at Walgreens but is only $60 at WestAid!  Here is their number if you ever want to price them  1-800-939-9495

I hope everyone is doing well.  HANG IN THERE!!  My headaches are NOT my friend!

Living

I have been doing so well.  So well in fact that my chief complaints are only sleepiness & muscle weakness.  I am still worn down at the end of the night & if I do too much.  But I'm getting there. 

Thank you detox
Thank you Nuriche
Thank you Bicillin
Thank you Dr. B
Thank you Dr. P
Thank you hubs (even though you are a pain in my butt sometimes)
Thank you mom
Thank you to all my supportive friends on Facebook & here on online outer space
Thank you to everyone who told me not to give up
(all in no particular order, just what came to mind)

Now I need to raise money to treat Q Fever, Mycoplasma, Babesia & any other bastards that are trying to kill me. 

May is Lyme Disease Awareness Month
We are doing a fundraiser/awareness walk up in Hesperia, CA on May 15th to raise money for myself and a few other "lymeheads" (someone on Facebook gave me that term & I cannot remember who).

I am doing a huge garage sale & asking friends, family & friends of friends to donate items to sell that will happen March 22nd.

My friend Leslie says she will help me to plan a poker party fundraiser.  Now that sounds like fun!

And the grand finally. .. . . .  .  a big huge NATIONWIDE RALLY for Lyme Disease.  Date TBA.  If you are interested in organizing in your area, please let me know!  This is very important & no matter how sick you are, we need your support.  Get your friends, you family, your co-workers, your neighbors in on it.  

xoxo!  To life!!!!  Cheers.

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Sonya's PSA - Sonya Nelson

Lyme PSA - Sonya Nelson

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.

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.

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).