Thursday, December 31, 2009

New Years Eve

I have to say that 2009 has been the worst year of my life.  But then again, I was lucky to get married to my wonderful husband this year.  So is it fair to say that this has been the worst year of my life?  I wish I could do my wedding all over again.  Being that I was sick and having cognitive & emotional issues due to the lyme, I was not "all there".  I wish I could give it a go again with a clear head.  I wish I wasn't so stressed out and could actually enjoy it.  I wish I would've been able to enjoy my out of town guests more.  I felt like I was going crazy and I am sure they thought I was too.  Ah, I can't take it back.  I hope they all understand that that was not really me they were dealing with.  They were dealing with Lyme. 

Aside from the lyme disease, I went through this period from February through April where I had extreme anxiety & panic attacks.  Not sure if it was due to the lyme disease, since that is a symptom, or due to the stress of planning a wedding.  It was very hard, and scary to say the least.  But my soon to be husband stepped up to the plate and got me the help I needed to get through it.  I went to biofeedback, to a cognitive therapist & tried other therapy.  I learned how to deal with it and I got over it.  I thought THAT was the worst thing to ever happen to me.  Until lyme disease. 

We'll never know how I got lyme.  I truly don't think I was infected by a tick.  I still think it was either a flea or a mosquito.  But I'm going with the flea.  I saw one at the foot of my bed when I was changing my sheets (I have 3 indoor dogs).  I remember seeing a bite on my foot while walking with my neighbor Pauline early in the summer.  In my heart, I think that's the one that did it.  However, none of my dogs appear sick in any way.  And dogs get lyme disease also.  I worry about next flea season.  I need to find a natural remedy that actually works.  Two of my dogs are sensitive to topical treatment & I am skeptical about putting pesticides on them.  But I worry about the rest of my family.

Goodbye to the year 2009 ...  ... . thank God it's over.

Wednesday, December 30, 2009

This is getting worse

I hate Lyme Disease!  I hate it that no one flippin' knows how to cure it. 

Yesterday I didn't even get out of bed to take a bath.  Things are getting worse.  And for the past almost 2 months, they have been GOOD, getting better every day.  The past 9 days not so much.  Maybe I was at the top of the rollercoaster and I am coming down.  So there's going to be another hill, right?  I got out to Sprout's market so I can get some food last night, but barely  made it through the aisles with the help of my awesome hubby of course.  He's always there to catch me if I start to fall.  He's caught me every time.  I've lost the 2 pounds that I so happily gained.  And then I lost 2 more on top of that.  What's happening to me?  I can barely walk.  My muscles aren't working right.  I was gettting out of bed this morning & my legs wouldn't work.  I had to get up & go down stairs to let the dogs out & it was not an easy task, let me tell you.  Last night, Rover almost knocked me in the pool.  Third time I almost fell in the pool.  I don't want to go in the backyard alone anymore.  I'll just walk up against the house.  Today just walking up the stairs it took what seemed like forever.  About a week and a half ago, I was running up the stairs.  Thinking, I'm not going to have to get that PiCC line after all.  Look at me, look at me!!!  Smiles, all smiles.  When I made it back to my bed my heart was pounding like I had just ran a million mile marathon & I was out of breath.  THIS IS CRAZY!?  What is happening to my body.  Whatever.  What am I going to do about it?  Vicki says I need an enema.  I actually have one. . .. .   I've never had an enema.  EEeeeeeeewww....  Maybe I'll go do that right now.  I guess the enema helps with detoxing.  My head feels like it's in a vice grip.  I woke up with those words on my lips this morning.  Vice grip.  So I must've been thinking that in my sleep.  I think my brain is swelling.  YUMMY.  That's always fun.

On a "YAY!" note, my friend Tracy is going to come by to visit me today.  That makes me happy.  So I must get my butt in the tub because I stink (sorry, but it's true.  Ask hubby).  Now how does one do an enema???  I guess I'll go find out.  Aren't you glad you read my blog today? 

I will drink a ton of water, take all my supplements on time & I will try really hard to be positive.  Or at least not so negative.

Tuesday, December 29, 2009

Under Our Skin Theatrical Trailer

This is a great documentary.   Even if I didn't have Lyme Disease, I would still love it.  I could watch it over & over.  I also watched Sicko last night.  It hit close to home since insurance doesn't cover a penny of my medical costs.  Please go to a viewing of Under Our Skin if it comes to your area.   If you still haven't seen this film & would like to, please comment with your email address.  I will not publish your email address, but I will assure you get to see the film.

Monday, December 28, 2009

Found cheaper supplements & I want to share.

Some of my peeps that read my blog are fellow "Lymies".  Meaning they also have Lyme Disease and are searching for a treatment and cure so they can get on with their lives.  Honestly, I dislike that word, but I didn't make it up.  Anywho- I have previously posted all of my supplements to help others because I think my LLMD (Lyme Literate MD) is the bomb & knows her stuff.  She pretty much follows Burrascano Protocol (click to get the 16th edition of protocol, is there a 17th?  I didn't even know about the 16th!).  But she is one smart cookie.  She understands very well how the cells of our body work, etc.  Well, I hope she doesn't mind but in an effort to save money, I have found some pretty good supplements (pharmeceutical grade, of course) that will have to do for now since my other ones I just simply cannot afford.  Here is what I found on (love this site!):

  • Body Rescue Alkaline Booster pH Protector Drops - 1.25 oz.  Item#: 75565 $4.75
(They are to lower the acidity of my bodies pH, supposed to help with detox  also help kill the bad stuff.  Haven't tried it yet, will let you know.  Good reviews)

  • Country Life Ultra Omega's DHA/EPA 500 mg - 120 Softgels  Item#: 58939 $10.46
(This is to replace my $34 DHA/EPA Omega 3)

  • Jarrow Formulas Neuro Optimizer - 120 Capsules     Item#: 66411 $34.96
(This is to replace my $60 Avipaxin, basically same thing!)

  • Foodscience Mega Probiotic ND - 120 Capsules      Item#: 61669 $15.97
(This is to replace my OrthoBiotics that is $55)

  • Jarrow Formulas Co-Q10 200 mg. - 30 Capsules     Item#: 66236 $9.64
(I'm going to stat taking Co-Q10 for heart palpitations, etc)

I also got my shampoo, conditioner, face wash, face moisturizer, lotion, & toothpaste.  All for about $110 including shipping (free with $100 purchase).  Oh & you get reward points for every dollar you spend.  Everyting I put on my body is all natural too.  So this is great place to get it.  I buy the Kiss My Face products.  They are a fraction of the price at Lucky Vitamin.  Same with all the supplements.  Trust me, I shop around.  Just wanted to share with everyone in case you are looking for alternatives!

If I die before I wake. . . . .

Last night I got one of my awesome (totally, 100% sarcastic) Bicillin shots.  This one hurt like hell (they all used to in the beginning).  The one before (Thursday) not nearly as bad, even though I had to have Adams daughter come hold my hand.  But last nights was just painful.  The needle going in hasn't been bad at all (it used to feel like a fire-hot butter knife going into my butt muscle).  But once the thick paste-like goo started going in the pain began.  Sometimes it is local pain but not this time.  It was the entire butt cheek.  Then the spasms started.  My muscle started spasming.  Hubby could even see it flexing while he was doing the shot.  This has never happened before.  Pain, sure, often, but never the entire butt muscle saying "uncle".  About 2/3 of the way through the 10 minute procedure, I wanted to stop.  And I didn't know if I could ever go through this again.  But I have to.  Once I got my shot, I was all freaked out because the pain moved down my leg.  There is always concern that you accidentally hit a vein or something & it did bleed a lot once the needle was out.  But with the way  my heart was pumping, I would've already been dead had it gone into the vein.  I didn't take an ativan before hand because we didn't have time.  It was already getting late & I thought I could do this without one.  NEVER AGAIN.  I called Mango, my doberman, up onto the bed to cuddle.  She soothes me.  Sometimes Martini, the chihuahua, will jump up and cuddle under my chin when I am in pain.  This time he ran into his cozy & hid.  After every shot, we get up & go for a walk around the block.  It helps to work the muscle, & get the thick substance absorbed.  Adam took the two big dogs (Rover & Mano) on the coupler because I now had a severe limp.  Martini hates his leash so he often refuses to join us.  On this walk, every inch of me started to hurt, from my hips down.  There was a time or two on this walk where weird things happened to me.  I didn't mention them at the time to Adam because I hate to seem like a hypocondriac.  My vision was jumping up & down and I got that "I don't feel right" feeling.   I can't explain it.  When I try to explain it to hubby, I say it's like I am going to have a seizure or stroke or something.  I almost feel "out of body" .. . .  I don't know, I can't explain it.  But it scares me.  It kept happening last night & I even had a weird chest pain I hadn't had before.  I try not to let these things freak me out, butwhen people die of Lyme Disease, it's not like when people die from cancer.  Often times (from stories I've read), there isn't "plenty of notice", or a doctor giving you a time frame (although in some cases where the heart is obviously failing, there is).  Something crazy just happens & that is it.  So this night, last night.  I wasn't sure if I was going to wake up in the morning.  Which is fine by me.  I just don't want to be afraid or feel pain, or suffer.  If I go, I hope it's in my sleep.  So I took my benedryl and I said that prayer that you learn somehow as a little kid, "Now I lay me down to sleep, I pray the lord my soul to keep, if I die before I wake, I pray the lord my soul to take".  The benedryl kicked in & off I went. . .  I obviously woke up.  Still in pain from the hips down.  A dull, achey pain.

On a much happier note.. . .

Hubby came in with the mail this morning & said, "You got mail."  Yay!  I love getting mail.  I already got my Netflix DVD's!  I got Sicko by Michael Moore, 500 Days of Summer with that cute girl Zooey Deschanel (she reminds me of my friend Barb), & My Sister's Keeper (at my step daughters request).  Now I have something to take my mind off things.  I am so grateful for this gift from my in-laws!!  I don't know what I/we would do without them.  They are such good people.  And it's not just about the Netflix & the BluRay DVD player.  I got lucky in the in-law department.  So did hubby.  He loves my parents too.
My Sister's KeeperSicko (Special Edition)(500) Days of Summer

Sunday, December 27, 2009

Christmas, feeling crappy, & a possible hair loss cause.

Merry Christmas everyone!

I haven't been blogging lately because to put it bluntly, I feel like crap.  Got "sick" again a couple days before Christmas.  When I say "sick" I mean, to where I can't function & I lay in bed or perhaps the couch all day.  I guess I could call it a bad day.  A good day is where I actually get out of bed, get dressed in something other than sweats, & maybe go out with hubby to run an errand.  I have either been very nauseous lately or more recently.  Just Lyme sick.  Weak muscles, neck pain, HEADACHE, fatigue, lethargy, sometimes feeling just "not right" which is scary.  Still I managed to go to my in laws house for dinner on Christmas Eve & again on Christmas night.  Prime rib!  Delicious.  It was nice because the kids left in the afternoon to their moms & my parents are at their Arizona house with my grandpa & his love, so it was just hubby, me & the dogs laying around.  Pretty lonely & not too Christmas-y just being us, so I was glad we were able to go to their house for dinner.  Yesterday was hubbies birthday and I felt bad because I had to depend on him to bring me every meal, etc.  I layed in bed & watched 'Taken' with Liam Neeson (so good) & Atonement (ok). 

My in laws bought hubby & I a Blu Ray DVD player & a years subscription to Netflix!  YAY!  I need that because watching movies is a good escape when I feel too bad to read or play on the internet or blog or whatever.  Keeps me occupied.  So excited.  I just need to get hubby to install the player downstairs.  We'll see if it ever happens.  He did attempt it today but couldn't get enough light to see.  I also got an Ipod from hubby & the slippers that I asked for.  My other slippers are shot & several years old.  It hurts my feet to hit the cold tile when I go downstairs.  The Ipod is VERY cool and I wasn't expecting it.  Hubby got it for me because I need to meditate & they have free podcasts, etc.  I wanted to buy a meditation CD but couldn't find a CD player to play one in, so I thought an Ipod would be perfect.  Well I got more than I bargained for!  It even has a video camera & a pedometer on it.  Not to mention games & other Ipod stuff.  It's a Nano with 16 gb of memory.  Now where to get the music & audiobooks??  That stuff can be expensive!!

Possible Hairloss Cause

My friend Nani (met her on Facebook, her dad has LD) had commented here on my blog about another person searching for answers as to why her hair was falling out.  I checked out her blog and she said her doctor had her do an iodine skin test & that she was probably iodine deficient & that is why her hair is falling out.  In all my research, I have heard people mention this skin test so I quickly called up hubby who was out running an errand & asked him to pick me up some. 
Applied it at 1:48pm 

Here it is 12 minutes later: 

In the meantime, I read this very interesting article called
Dr. David Derry Answers Reader Questions

Brought to you by Mary Shomon, Your Thyroid Guide
a doctor wrote about Iodine & how it was used a hundred years ago & how it should be researched more today.  Not sure if it will help with my hair probem.  But it is VERY  interesting.  Even if you don't have Lyme Disease.  I need to tell my friend Emily to read it because she was just saying today that her hair is falling out.

Wednesday, December 23, 2009


I haven't written for a few days because I have been herxing (I hope).  SUPER nausea.  2 nights ago was the worst!  2 hours of what felt like food poisoning.  I was so scared.  Anyway-

Friends.  Our "chosen" family.  These are the people we love & become part of our family.   They are there to make you laugh, celebrate with you, pick you up when you are down, give you a shoulder to cry on, to support you.  Often times, we are closer to some of our friends than we are to members of our own family.  Throughout most of my adult years, I moved to Idaho & I lived far away from my family.  My friends, naturally became my family.  I was also single then (and younger), as were most of my friends.

I just don't understand what has happened to my friendships.  Here I am going through such a hard time in my life.  Obviously the hardest time in my life.  I read on the forums & message boards that friends & family members often times "disappear" when you get Lyme Disease.   Friendship is a topic that I have wanted to write about here, but not sure how to approach it without offending people or hurting anyone's feelings.  But it is something that is on my mind.  I am just wondering what happened to all of my friends?

I found this "article" written by Kathy Cavert.  A long time Lyme Disease sufferer who has since passed away from her Lyme Disease.  It's called Psychosocial Issues of Lyme DiseasePlease click on the link & read it.  It really explains a lot about what people with Lyme Disease go through.   It explains a  lot about what I am going through. 

I guess what I am trying to say is I AM LONELY!!!!  I am pretty much home bound.  I may get out to a movie or stop off at a store every once in a while, but I am stuck at home because I am sick.  I just want someone to visit me sometimes.  Come by and watch a movie.  Or stop by for 10 or 15 minutes to say hello.  Or call me.  I have several friends that live within a 10 minute drive from my house (or closer).  I don't understand why no one comes over.  I have friends that live out of state.  They don't call or return calls.  Maybe we really aren't as good of friends as I thought we were.  Maybe they don't want to hear about me being sick.  But that's all I got going on right now.  I don't really go anywhere or do much these days.  I know everyone has their own  lives and there is a lot going on.  With the economy being bad, etc.  Uuuuggghhhh, now I am just feeling sorry for myself.  But what good is a blog if you can't be honest & truthful about what you are going through? 

To be quite honest, most of my friends haven't even read my blog.  Maybe they don't believe that I'm really sick.  That's what my husband thinks   Eh- they say you find out who your true friends really are when you are at your lowest. . . . .   Here is a quote from the UNDER OUR SKIN blog(an amazing documentary about Lyme Disease).  It is by one of the documentaries subjects & narrarator.  He later blogged about his life with Lyme. 

"If someone in your neighborhood gets cancer, people show up with casseroles. Neighbors organize to support the affected family. Family members come from all over to visit and sit by the bedside of the affected person. But when someone gets Lyme, often none of this happens, and the Lyme family is terribly alone."

Saturday, December 19, 2009

Nausea, Nausea, Nausea = Herx?

Oh boy.  Yesterday & the day before I was sooooo nauseous.  You know, on the verge of tossing your cookies, but never quite there.  The first day I took an activated charcoal & it took the nausea away very quickly & lasted about 2-3 hours.  I took it yesterday and it didn't do squat.  You can't take it within 2 hours of taking supplements, meds, or food (ideally) because the charcoal absorbs both good & bad.  It helped to eat something, my nausea would subside for a short while each time I put something in my stomach.  I think I am herxing.  YAY!  I have herxed like this (with nausea) 3 times before.  Twice with Bicilllin , for two days after a shot & then 1 day after the next shot.  And now.  The worst was when I was on Doxycycline.  5 straight hours of pure misery.  The Doxy herx was much worse than the Bicillin herx.  The Doxy herx was similar to having food poisoning and I actually vomited once (made myself, had to, miserable).    Today, no nausea so far.  YAY!  But my neck is hurting again.  No pain else where, not one bit.  My muscles usually hurt all over.  It moves around.  I guess that's called Fibromyalgia. And I just noticed today that my hands haven't been hurting lately (all my joints in my hands usually ache).  Too bad it's too late to send out Chrstimas cards.  Just writing the thank you notes from my wedding was a task.  So no Christmas cards this year.  Sorry.

I found this interesting article (not sure what it is) that someone wrote about Lyme Disease and a descrption of what it is like.  I would like all of my friends & family to read it.  So I will post it here.  I also am posting it because it's a great thing to read for anyone that has LD.  I don't agree 100% with everything.  But about 85% seems to add up with all my other research, etc.  It's titled Late Stage Lyme Disease and I am not sure why.  Tons of info.  Will take you about 15 minutes to read.  But very interesting and worth it.  So please take a look.

Thursday, December 17, 2009


So you can definately say that I need some inspiration as of late.  All of these ups & downs . . .  I felt pretty bad yesterday, that's why I didn't write.  But today, I wake up and all is new.  Very small amount of pain in my body, I have some energy, and I don't feel like dying.  Not yet anyway. 

I joined this online "support group" for people with Lyme Disease, MDJunction.  Since treating Lyme Disease isn't cut n' dry, you have to be doing your own research.  You have to be on top of things in the world of Lyme and it's discoveries or else you're not doing enough to get well.  The people on this site are going through the same thing I am.  Some have had it for 40+ years and are still searching for their cure.  Some are just finding out today.  Some are hoping it's Lyme Disease instead of that ALS diagnosis they just recieved.  SCARY! 

I have been "hovering" at that that site since October, but finally started to take full advantage.  I am working my way into the group.  I am supporting people and they are supporting me.  Like me, most everyone around them have no idea what it's like for someone with this disease.  Yes, I may look ok on the outside, I think the Lyme saying goes "But you don't look sick".  And when my friends see me, it's only on my good days.  So those days that you don't really hear from me, it's usually because I am curled in a ball in my bed or in the tub for relief.  But it doesn't mean I am not sick.  The people at this forum realize this.  I have a lot of crazy, strange symptoms that make me cry.  They scare me so bad.  And they are things I can't even explain to my husband.  Like yesterday, I was in the tub.  I was looking at a bottle of face wash.  Trying to read the back of the bottle.  There were these waves coming over it.  I closed my eyes & looked again.  They were still there.  I thought maybe it was the heat from the tub.  Giving off heat.  Like on a super hot summer day looking down the road at the asphalt.  It scared me.  Then it went away. 

Anyway, I wrote to this group looking for an answer yesterday because lately things have been a little rough again.  With the return of the neurological symptoms.  I explained my symptoms & how they have been gone for a couple of months & are suddenly back.  Is this a herx or is it indication that my treatment is failing???
Finally after waiting all day.  Someone writes me back.   It was beautiful.  It was the inspiration I needed.  I removed his name from the bottom because even though this was a public post, not sure if he wants me to repost it elsewhere:

"~~~Yep sonyafly.This dis-ease surely is a freak out.

~~~What you are describing is classic Lyme and only the tip of the iceberg of possibilities.
~~~Expect the unexpected and you will have a lesser freakout.
~~~Your symptoms will come and they will go,wax and wane,and go up and down like a roller coaster.  New ones will appear.Don't be alarmed.This is "normal".
~~~Just when you think your out of the woods you find yourself in a forest.  Prepare yourself for a very long and arduous journey.
~~~And when more doodle hits the fan you will have the forsight to see it coming and just say "yes, I've been expecting you.  I have my super duper doodle scooper armed and ready for you"
~~~What is this super duper doodle scooper you might ask?
~~~Spirit/Wisdom. While you are ill you can begin to heal by building these two mighty forces.
~~~How?Seek out Wisdom.  Go to the book gettin place and find the wise ones.  If you want to get wiser find those who are wiser and follow their lead.  Turn your inner light on.  Cause Momma ,you gonna need it!
~~~And if this Lyme thing should be short and sweet than I stand corrected about the long thingy dingy.
~~~Of course you may want to take the "I am healed"mantra chant path.  Or a million other healing techniques.  Just meanwhile, until the physical healing begins,don't ignore the Wisdom/Spirit building.  This will be the key to healing even before the physical healing begins or even happens.
~~~Because if you think that healing is only about the physical aspect of your life then you are right-and you will lose.  And if you think that healing is about the spiritual aspect then you are right-and you will win.
~~~Healing is not about ridding the dis-ease of the body but of ridding the dis-ease of the mind.  The dis-ease of the body may or may not leave but if you do not rid yourself of the dis-ease of the mind then you will be trapped.
~~~Free your Spirit and the body cannot jail "you".
~~~I'm gonna be quiet now.I'm goin(gone)to my straight jacket~~~out on a limb~~~lookin like a cocoon~~~hangin by a thread~~~meditating on wisdom~~~waitin for a butterfly~~~coocoo, Love to you,"

Tuesday, December 15, 2009

They didn't work & waking up

Okay, so even though I did get sleepy with the holograms, I didn't sleep.  I sat in bed waiting to become tired, watching Family Guy until 1am.  I was determined to give these a shot, but I just couldn't handle it anymore.  So I gave in & took 1/2 a benedryl & fell asleep somewhere around 1:30am.  Hey, I sat there for 2.5 hours!  I gave it a true shot.  But people with LD don't sleep well and I never take naps.  Even though my doc wishes I would.  I just can't.  I used to be a great napper.  I am probably not a good test candidate for the "rest" hologram because of the LD & also because I take LDN (Low Dose Naltrexone) right before I go to sleep.  It causes sleep disturbance.  Hence the Benedryl.  I think the pain holograms may have helped though. They fell off, so I need to find some band aids to re-stick them to my neck.

  I didn't wake up until 10:30am.  :)  The dogs (we have 3) were like, WAKE UP!  We need to pee & we are hungry! I need SLEEP to heal.  Sleep is good for your immune system. Today was tough waking up to the reality of having Lyme Disease.  Made me sad.  However, I am handling it better, and I have improved with treatment, and I have just accepted it for what it is.  More later . . . .

Monday, December 14, 2009


This is a close up of the hologram.  Supposedly it works with your bodies energy.

Hologram for sleep & pain

Some guy my husband knows came over & gave me two different kinds of holograms to try for my neck pain & for help with sleep.  My husband was on the phone with him & they were having a conversation about my pain.  He came right over.  Put 2 pain holograms on my neck & 2 of the ones for sleep on certain points on my body.  I have been yawning for the past 20 minutes.... interesting.  I am not going to take my 1/2 of a benedryl to sleep tonight to see if I wake up.  I sleep through the night now with the 1/2 benedryl.   My neck pain has dimished significantly.  I can leave the pain holograms on for 48 hours.  The sleep one lasts for 24 hours.  I'll let you know how it goes.

So am I going to lose all my hair? I want a second opinion.

I spent most of today doing research on Lyme Disease.  I feel like I could write a book on the amount I research.  All in the name of finding a "cure".  I am trying to figure out why people with LD suffer hairloss.  My hair started thinning a year a 1 month before I got "sick".  My sis in law does my hair & noticed a bald spot that appeared in 2 weeks.  It didn't get any bigger & so we didn't think much of it. But then this spring I was under a lot of stress & I noticed some more thinning on top of my head (around my face) & another spot.  We got my thyroid & hormones checked, & all appeared ok.  We eventually went to a dermatologist who didn't know the reason either & suggested Rogaine.  However when we went to go buy it it said not to use if hair loss is patchy.  Mine was patchy.  That was a waste of a doctor visit.

A couple of months before I got "sick" I was just losing & losing hair.  We didn't know why.  Then I got sick & eventually diagnosed with Lyme Disease.  Unexplained hairloss is a symptom of LD.  But then no one can explain why.  Maybe I've had the Lyme longer than I thought.  Maybe I got it when we went camping at the Kern River in July of '08.  We hiked through woods & tall grass.  No one else from that camping trip is sick.  Hmmmm....

If anyone knows of an herbal remedy or anything that helps with the hairloss.  I am all ears!  I mean, everyone says the hair grows back & I just chopped off 7 inches!  It was looking to limp & thin.  Luckily it isn't too noticeable.  This is before the CHOP!  I will post an after pic when we take one.

Second Opinion
While doing my research (I do a couple hours a day) I came across a YouTube video of a segment on Good Morning America.  It was a story about a weather girl  from Channel 6 News in San Diego that had suffered a battle with Lyme Disease and was now doing better.  I then found an article on the stations website that had interviewed a Dr. out near SD that specializes in Lyme Disease.  There are not a lot of those docs out there.  I checked out their website, called & got more info and made an appointment.  They take insurance, but of course they don't take my insurance.  Oh well.  So I made an appointment with the consent of my loving husband.  I will be going on the 23rd of this month.  It's only about an hour and a half away.  I see the Nurse Practitioner first.  And then we go from there.  The lady on the phone said that 70% of their patients have Lyme  Disease.  The docor works for free.  But of course I still need to pay.  We will see if based on our income they give some kind of discount.  WE SHALL SEE.  I am looking forward to it.  I want to make sure I am doing everything I need to so that the disease doesn't advance.  I will also ask which tests are the most important for me to save up for.  I will do them in order of importance.  If the money situation gets better, I will also see a Naturopath or consult with one by phone that specializes in Lyme.  Most of those specialists are more toward the east coast where Lyme is more prevalent.

I have seen great improvement with the Bicillin injections.  Although the past week has been difficult because some of my symptoms that I thought were long gone have returned.  They are the Neurological symptoms that scare the crap out of me.   So they are NO BUENO.  Neck stiffness & pain, my knees buckling when I walk, & I'm again "off balance".  Plus I have noticed a few heart palpitations.  My LLMD, Dr. B thinks I am herxing.  I hope so.  Keep your fingers crossed.  Someone is on their way over right now to give me a "microchip" or whatever it's called to put on my neck & it is supposed to take the pain away.  It's the latest MLM craze.  They are spendy, let's see if it works!  If not, I always have my Ketamine cream & the neck heating bag.

Sunday, December 13, 2009

The Donate Button

I put up a donate button here on my blog so that people can donate to my medical expenses if they are feeling particularly generous.  Yes, I have medical insurance at the cost of $211.00 per month, however, it has only covered some of my blood work, the stuff my wonderful internist orders (he was the only doc that believed me when I said I was sick).  The rest of the blood/urine tests I need I have yet to do.  Those tests come out of my own pocket, paid up front.  Remember, this is Lyme Disease & it is virtually ignored by the medical community.  Therefore, insurance won't cover treatment/expenses unless you have a flaming POSITIVE test.  Mine wasn't positive enough for my insurance company to feel obligated to help me save my life.  I have several tests still needed totalling about $1500-$2000.  I have the kits at home, just don't have the dinero to give them my samples of blood, poop, or pee.

I have yet to test for my co-infections.  I need this test to see what else I am infected with besides the Lyme bacteria. This is very important because you cannot be "cured" (if such a thing exists) of Lyme unless you also cure the co-infections.  Every co-infection has a different treatment.  I have no clue how much that test runs. I am getting ready to take a Western Blot test through Igenex Labs.  This lab does a more sensitive test than standard labs.  On my first Western Blot through Quest Labs I only had 1 reactive band (you need a few, not exactly sure how many) in order for the CDC to acknowledge you have Lyme Disease.  However, with a screwed up immune system DUE to Lyme  Disease, your body isn't going to product the antibodies!!  This is why testing needs great improvement.  This test is going to cost me about $350.  Please cross your fingers for me, pray, or whatever you do, that I get positive enough so that I may get help from insurance.  There is another treatment I need (IV Rocephin via a PiCC line) that will be pretty expensive & I can get insurance to cover 30 days of this stuff & the outpatient procedure to put the PiCC in & the nurse if I can get enough reactive bands.  I don't know what my odds are, but apparently, it's rare for people to get "positive enough".  As I have mentioned before in this blog.  The IDSA & the CDC are corrupt.  Apparently, they are on the insurance peeps payroll.  Go figure.

So anyway, I really need help.  It is hard to ask for donations, but I feel like we are drowning here.  I can no longer work due to my illness and my husband works very hard as a Realtor in this market trying to raise 2 teenagers with very minimal help from their mother (I think we sometimes get $120-160 per month in child support).  I am going to create & sell things to try to raise money. That will also help me to pass the time and not feel so helpless.

I appreciate anyone who does make a donation.  As I know how hard things are for people right now.  Any amount will bring tears of joy to my eyes.  Even if it is just one dollar because it does add up.   And I know how hard it was to earn that dollar.  I am working on getting an actual foundation set up so that any donations made can be tax deductible.   That is in progress as we speak!  I will let you know.

My Medical Protocol

I am posting the protocol that my LLMD (Lyme Literate Medical Doctor) has me on.  This is so that people know what my every day life is like, and so that I MAY be able to help someone else in some way.  Even if only minor. 

In my blog I will refer to my doctor as Dr. B to protect "their" identity.  I don't want to risk them losing their license for treating my Lyme.

It seems like everyone is on different treatments when it comes to Lyme Disease.  What works for some may not work for others.  At this time, the battle against Lyme Disease is an uphill one.  And everyone with Lyme Disease is a guinea pig.  Everyone has different co-infections. Yep, you don't just get the Lyme Disease bacteria, Borrelia burgdorferi, but you can get up to 4 other co-infections with different strains.  To learn more about co-infections please click here CALDA Coinfection Intro  I am posting this so that either I can help someone else that cannot afford a doctor (most everyone fighting Lyme Disease has to pay everything out of pocket).   Please keep in mind that this is MY protocol, I am not a doctor, nor am I recommending anyone treat themselves or follow my protocol (legal protection).


Bicillin LA (Penicillin G Benzathine) 1,200,000 units (2ml) Injected IM 2 times per week (may up to 3 times eventually)
For help in how to do Bicillin injections & more info, click here:  Bicillin Injection Info

Cost: $650 for 10 syringes

You can get generic from other countries, but it is a "pain" to inject & there can be a lot of error involved.  Someone with experience dealing with generic Bicillin talks about it in her blog so you can read about it here 


  • Ortho Biotic by Ortho Molecular Products (7 different pro-biotics, pharmaceutical grade): 1 capsule 3x/day 30 minutes before each meal.  $55 for 60 capsules
  • Digestzyme by Ortho Molecular Products (digest enzymes to aide in food digestion): 1 capsule 3x/day at first bite of each meal.  $30 for 90 capsules
  • NT Factor Energy by Researched Nutritionals (Mitochondrial Formula, helps with fatigue): 2 capsules after each meal (only I only take it twice a day to save money). $50 for 90 tablets
  • K-Pax by Ortho Molecular Prodcuts (pharmaceutical grade vitamins).  8 capsules total per day after meals  $38 for 120 caps
  • Orthomega Select DHA (DHA & EPA pharmceutical grade omega 3, etc) 1 capsule 2x/day after meals.  $35 for 60 capsules
  • Avipaxin by NeuroScience, Inc. (regulates proinflammatory Cytokines by supporting Acetylcholine) 2 capsules twice per day.  $60 for 60 capsules
  • Milk Thistle (supports liver function) I buy it wherever, Trader Joes.  I can't remember cost,  I think it was around $6 for 100 capsules
  • Methylcobalamin (Vitamin B12) 12 micrograms (I think it's micrograms, it's .12ml) Injected 3 times per week   $35 for 1 month supply.
Other Prescriptions:

Naltrexone HCL 3mg Capsule AKA: Low Dose Naltrexone or LND  (This is to improve my immune system)  To learn more about this little wonder drug, click here:
Here is what this particular website says about it: "FDA-approved naltrexone, in a low dose, can boost the immune system — helping those with HIV/AIDS, cancer, autoimmune diseases, and central nervous system disorders."

I have done research online about this drug & it is very promising for a lot of diseases.  I take 1 pill at night right before I fall asleep.  Cost $57   for 60 capsules (must get through compounding pharmacy).  The compounding pharmacy I use is McGuff's Compounding Pharmacy Services, Inc.  Clay knows my doc & is the ad pharmacist there.  They make my LDN & B12 (methylcobalamin) & they order my Bicillin shots for me.  He seems to be pretty knowledgeable about Lyme Disease.  They service all over the US.  Shipping is incredibly fast.  My LLMD says this is the best compounding pharmacy she's found.  Very clean, strict with regulation, etc.

**I take all the pills with a small glass of kefir.  My stomach doesn't get upset that way.  If I don't take it with kefir, there is a lot of pain involved.  Not sure why.  Kefir is also an excellent source of 10 different probiotics.  I am going to order my own kefir granules & make my own.  It is reportedly great for your immune system.

Finding God . . . . .

Up until recently, I rarely prayed.  I mean, every once in a while I would.  Like if I knew someone really needed it or I heard something sad happen on the news.  I would say a quick, "Dear God, please help that family get through this."  I don't know why I did it.  Not sure if I even believed.  But I have always believed in a "higher power".   Especially when I would look up into the stars at night.  I also know that prayer has been scientifically proven to send out energy to the Universe.  Or to wherever energy goes.

So you know how people find Jesus, etc when they are in prison, or AA or hook up with a  new girl or boyfriend that goes to church?  Or when they get sick?  Well I am one of them.  I got sick, I found God.  But in my own way.  I used to get very uncomfortable when someone would bring up God or start talking about praying or anything like that.  To be completely honest, I would roll my eyes.  Those evangalists on TV all dolled up in their painted on make up & HUGE diamonds all made me sick to my stomach.  I do not appreciate organized religion and trust me, I have tried.  I don't like how there are set ways of doing things or how one religion is right while the other is wrong.  I don't like moral judgements.  I don't think that I should live my life based on the bible.  I have yet to have ever read the entire bible.  My philosophy is that the bible is part truth, part story.  Back in the day, they couldn't explain scientificially how things and people came to be, so they made up a story to explain it to people.  Now that makes sense.  And there are important lessons to be learned in the bible.  So I think it is very important.  And probably everyone should read the bible.  Maybe I will work on that one day.  Just who's version??????

With Lyme Disease sleep isn't usually uninterupted.  I'm not sure why.  I will have to do some research on that.  I think it  messes up your adrenal glands. So I usually woke up about every hour.  I hated the nights until I started taking 1/2 a benedryl an hour or 2 before bed.  As it would get dark & bedtime approached, I would dread it.  It was my loneliest, darkest time.  I would lay awake so often in fear.  Fear of what was happening to my body.  I never knew what was going to happen next. Or how I was going to feel.  Sometimes I felt better at night than I did all day, sometimes I was worse.  Anyway, one night, I was in the most pain I have ever been in & I woke up in the night.  I was in so much pain & just felt so sick.  My head felt like it was going to explode.  I got down on my kness by my bed & I prayed.  I prayed really hard for God or the Universe or whomever is in control here to please help me.  To take this pain away so that I could sleep.  I prayed to wake up and feel better than I did at that moment.  Any amount of improvement would be ok.  And that's exactly what happened.  I quickly drifted off & woke up feeling nothing like I did.  Much more tolerable.  Hmmmm... I thought.  Maybe this prayer thing works.

So I started praying more often.  2 nights ago when I had trouble sleeping and I was scared because some of my neurological symptoms had come back I just prayed over and over and over.  Just kept repeating the same thing over & over until I fell back to sleep.  I prayed for my friend Barbara's son Chris who was in an accident on Monday and is still in a coma. :(  I pray before I get a shot of Bicillin because somestimes it takes me an hour to let my husband poke the needle in.  I pray for courage & strength.  Not sure if it helps, but I try just about everything to be able to finally tell him, "Go!"

This is a pic from a few years ago of Barbara, Angela, Me, & Lily.  If you are reading this, please pray for Barbara's son.  He is her world! 

Friday, December 11, 2009

I'm scared, is this herx or failed lyme treatment?

Tonight I am a little scared.  For the past 2 months, I haven't had any of the weird neurological symptoms that started about 1 month into getting sick.  Since I started the Bicillin injections, I have gotten MUCH better, and great improvement started within 2 1/2 days of my frist injection. 

This past Tuesday evening, I felt great.  Don't get me wrong, I never feel free of Lyme, but great compared to how I have felt since I first got sick.  So I went out to dinner with my girlfriend Grecia & then even stopped off at the mall for some very minor Christmas shopping (this outing was a HUGE feat!).  I had some aches & pains, my back hurt, so I came home.  No big deal, I just thought I had worn down for the evening.  Happens often, even on my best day.  My neck started hurting & then the headache came. I haven't had that in about 2 mos!  Well, it's 3 days later & my neck is so stiff I can barely look left or right, the stiff neck has gotten worse.  My knees have also started giving out on me again when I walk & I am also off balance again.  These were also symptoms that have gone away since starting Bicillin.  Also, the cognitive brain stuff.  I can't find the right words for things & I am putting the wrong word in a sentence.  It's starting to bother me.  It's giving me anxiety.  Is this a herx reaction?  Or is my treatment failing?

I talked to my doc yesterday & mentioned about the neck pain.  She says if it's still there on Monday she is going to have to prescribe something strong.  She doesn't want me in pain because pain weakens your immune system.  I currently have a prescription for oral Ketamine & I have some in my medicine cabinet.  But I am afraid to take it.  There are possible psychadelic effects that I dont' have any interest in finding out about. 

Maybe this is a lyme cycle, but I hope it's a herx.  Because a herx is just the bacteria dying off & it means you are on the road to recovery.  My doc think's I am herxing.  I just hope she's right.  The neurological stuff is hard to deal with.  I can handle pain, but I can't handle the scary stuff.

The Lyme Controversy

There is a big controversy over Lyme Disease and the treatment for Lyme.  I hear one of the President Bush's got Lyme Disease and is obviously cured of it.  I wish that would call enough attention to it.  But then again, I think the CDC is corrupt.  This link explains the controversy and why most insurance doesn't cover the much needed treatment.  Also why I need to start a fundraiser for my further testing of co-infections & treatment:

Thursday, December 10, 2009

Herx Reaction

I am often asked what it means to "herx" or to be herxing. Here are some explanations I found online. Basically it is a worsening of symptoms due to the antibiotics doing their job & killing off the bacteria. The die off of the bacteria causes your body to become "toxic". The kidneys & liver can only do so much to detox you, so I must drink a lot of water, & take hot baths to make myself sweat. If the herx makes me feel nauseous, I take activated charcoal. That seems to help.

It's hard to tell the difference between regular lyme sypmtoms & a herx. So herxing is good. If indeed that is what it is. But your doc does not want you to herx "hard" because it further weakens the immune system.
This is hard to watch. If my treatment now stops working, this is what I have to look forward to. Mine have never been this bad.

Wednesday, October 21, 2009

How Lyme Disease is affecting me so far . . . . .

I just wanted to have a place where I can answer questions without always having to answer questions. Sometimes I want to go a day without even having to talk about what is going on. But since I'm still newly diagnosed. People are still calling every day or stopping by because they've heard the news. I am grateful! Please keep calling & coming by. But writing things down just makes it easier so I don't have to explain what I am going through. Or how Lyme affects me day by day. So here goes . .

For myself & some others, the lyme diease goes in "cycles". That's why in my updates over the past couple months, you see that I am "feeling better" & then "sick again". I thought whatever it was that was making me sick was going away, and just when I almost felt like I could get back on my bike again, BAM! I'd be in bed with the worst headache, intense neck pain, & muscle aches imaginable.

Week 1 (Hell Week)

For 7 days straight. I am literally in pain from my head to the tips of my toes. Nothing I took for pain even touched it. It makes me see things out of the corner of my eye that does not exist. I have no appetite & have to make myself eat. It makes me very irritable, depressed, & anxious. I have heart palpitations & my heart is usually either racing over 100bpm or just putting along at 58 bpm. Sometimes I am afraid if I go to sleep at night, I won't wake up. I have crazy sensations all over my body. My left hand goes numb & my muscles twitch all over. That part doesn't hurt, it's just strange. My husband doesn't know what to do with me. This week, I will call "Hell Week". Strangely, I am able to get out of bed a bit in the evening for my daily (most days) walk around the block. My headaches subside somewhat in the evening. Which is good because I don't sleep through the night as it is. During this week & the next, Amy Novak is the only one I talk to. She's the most understanding. During the other weeks, I try to give her a break ;-)

Week 2

After "Hell Week, there is a week where I just feel like I have the flu, but I am able to go downstairs and hang on the couch. I may return your calls & my Facebook updates are less negative. Symptoms are less intense.

Week 3

Then the following week (the week I am in as I write this note) I start to feel even better. And I may even put on jeans or shorts & a T-shirt instead of sweat pants or pajamas. Still, there is no blow drying my hair or applying make up. Just 30 minutes of household activity & I am exhausted. But hey, at least I shower every day.

Week 4

The last week in the cycle is my favorite week. It is the week that I feel the best. I even have a day or two where I almost feel "good" just weak & tired. I will be able to get out of the house & go to the grocery store or maybe even the mall for a bit or the movies. This is my favorite week. My husband gets to see me with make up on!! And I may even blowdry my hair.

Now this cycle is likely to change very soon. Once on antibiotics, Lyme Diease is a whole new ballgame. Not one I want to play. I will tell you more about that later. Stay tuned!

Saturday, October 17, 2009


Saturday, October 17, 2009 at 7:23pm

I was just diagnosed with Lyme Disease and I am terrified for my life. I have been sick for just over 2 months. Never saw a tick, a bite, or a rash. So who knows when I was infected. I was riding my bike 4-5 days a week & walking 4-5 days a week and playing tennis for fun with my fiance until one day . . . BAM. I was sick.

I was misdiagnosed as having mono (my titers are high) & subacute thyroiditis (my thyroid is enlarged & I had a severe sore throat) & saw 3 docs a NP. Never a high fever. Highest it ever got was 99.9. I was in bed. Fatigue galore! Just my body though, I didn't even take one nap during the day. I still don't. I started to feel better about 4-5 weeks after the intitial symptoms. 3 days before my wedding, I was able to get out of bed. And every day I felt better & on my actual wedding day, my only problem was stress, hypoglycemia, & just a little fatigue. But it was explainable because with all the wedding stress & out of town guests, I barely slept the night before.

I am terrifed right now. I try to stay positive like everyone around me suggests often, as if it's that easy. I have never cried so hard in my life. The past week has been very rough. I was just diagnosed last Tuesday. When my Internist (the only doc that didn't suggest stress reduction, all being in my head, & antidepressants) was at a loss as to what was wrong with me, he just said, "I'm going to run a bunch of tests & refer you to an Infectious Disease Doc that I work with at the hospital". He was sad that he couldn't help me. He asked if I had been in any tall grass or had a rash, the answer was not since end of spring, but he ran the Western Blot anyway. I had dismissed Lyme Disease previously in my internet search for a diagnosis because I never had the obvious rash or tick bite.

A friend (Kristi) of a friend (Amy) had gone misdiagnosed for 3 years & they just happened to be talking a couple days before my doc appt. I mentioned it to my friend & she said, "That's what you have! Kristi has it!" I think my friend Amy was even convinced (like everyone else around me) that this was all in my head. I didn't hesitate to look up the symptoms online & Yep, that was me. I had 80% of the symptoms. Although most minor. But they were there. I called & made an appt with Kristi's LLMD that she swore by. She said she has been in treatment for 8 mos & is feeling better. So I just needed to wait for the blood work to come back & wait for my appointment. Internist called me on

Tuesday & said, "We have an answer! No problem, you have LD, 2 weeks of Doxycycline & you'll be fine!" I took his prescription & thanked him for not giving up on me. Told him I already had an appt with an LLMD & I knew it! I will always be greatful to him for believing me!!

My mom was there when I got the call. She finally realized I was sick. I think she was in shock. The doctors had everyone close to me convinced that I was crazy. I had my husband with me at appts, my mom, my friends, . .. the docs had them convinced.

I took the Doxycycline & on the 3rd day I got really sick. I felt worse than I had ever felt. I was nauseous as hell, my neck was killing me & my head. I eventually puked my guts out & felt better after 5 hours. Was that a Herx? Never once have I felt nauseous this entire time & it was many hours after I had taken the antibiotic.

My LLMD is about an hour away from me & she trained under Dr James from the 'Under Our Skin' documentary & has contributed financially to his attorney costs. I feel I am in good hands. She said she had to take me off the antibiotic because my immune system is too weak. She is slowly putting me on several supplements to support my gut (70% of immune system is in your gut) & once I am on all the supplements, I will take the Doxycycline & Zithromax. I will also be on other supplements to support my liver & Naltrexone (low dose) for something else. I will also start with B-12 injections 3 days a week. I am supposed to be on a crazy diet that is Gluten Free, Sugar Free, Soy Free, Casein (dairy) Free. And all organic. HUH?!?! What do I eat. I have dropped 15lbs and now weigh 103lbs. As of today. I have no appetite.

My different symptoms come & go. The worst of it is the neck & headache pain. The two usually go hand in hand. I don't sleep through the entire night. I have muscle fatigue & muscle pain that comes & goes. Muscle twitching all over my body, but it doesn't bother me. My vision is worsening & I have the "floaters" in my eyes. Just to name a few. Today my muscles are so weak that I almost fell a couple of times. I am losing my muscle tone. I also have anxiety, but I think that has a lot to do with the fear of what has been happening to my body. Whenever there is a new sensation or symptom, it scares me.

I find myself crying a lot, every day. And it goes up & down, I may wake up depressed & a couple hours later, feel positive & then a couple hours after that, feel despair & hopeless and thinking that I can't get through this. I find myself getting angry at my husband because he isn't there for me. I don't think he knows how to handle this. My emotions are up & down & he gets defensive. He is working 10-16 hour days trying to keep us afloat. Most of my friends don't understand what I am going through. I think they did a quick Google Search & read that it's just what the CDC says, a 2 week dose of antibiotics & you're good to go! Little do they know, this is a long road. My doc says at least 6 months until I even start feeling better (just a guess). And it is going to get worse before it gets better. Not something I am looking forward to, and I am fearful.

My rock through all of this has been my friend Amy. I will forever be greatful for her. Since my diagnosis, my mother too has been there for me. I love my mom & need her more than ever. My mother-in-law has helped to cook & bring over dinner for us (me, my husband & his two kids). She calls & so does my sister-in-law. Just to check in & see how I am doing. My friend Barbara has started a "prayer chain" and asked everyone to pray for me. I try to sound as positive as possible when I talk to people. But really, I'm terrified. I feel very lucky to have these people in my life right now. I NEED these people right now.

I feel helpless & hopeless right now. I feel as if I have been given a death sentence. I cannot function, I am either laying in bed or laying on the couch. We don't know how we are going to come up with the money needed for my medical care. Insurance doesn't cover Lyme Disease. I need some hope.

Tuesday, January 13, 2009


I guess I decided to blog . . . . . that was a year and a half ago. Looks like i had something to get off my chest. I definately see blogging as being therapeutic. I definately don't think it's anything new. Remember Doogie Howser, MD? I loved that show. I especially loved the end when he would type on his computer journal. And of course, there's Carrie Bradshaw from "Sex". Great movie, by the way.

Those that know & love me also love & adore my ADD. It keeps me from "sticking" to things.

Including blogging