Friday, December 31, 2010

I'm back! And we are moving!

I had to take my blog down for a while.  I was looking for a place to live & I accidentally sent my blog link with my signature.  I have it in my email signature because I want to spread awareness however I can.  You never know who you may send an email to and it may change their life!  Wondering what their crazy illness is that no doctor can diagnose....  anyway, I have mentioned in my blog many times our financial problems due to my inability to work & the high cost of my medications & supplements.  I didn't want it to cost us getting the house we were trying to rent.  We got the house & time has gone by so I think it is safe to bring it back up.

We are moving to the city of Temecula.  I am happy to report that the entire family (the 4 of us) are equally excited to move.  My husband drives out there almost daily & he has now starting working for a company out there as well.  The kids' high school they will be attending is a GREAT school.  It is a California Distinguished School and has a rating of a 9 out of 10.  The athletics program is wonderful.  I spoke to the athletic director personally & he was a wonderful man that truly cares about the kids at that school.  We was very positive & even promised my 14 year old baseball tryouts!  They already held them, but he promised he'd get a shot at it.  His old school is corrupt in the sports department and I knew it going in, but I didn't realize how much.  I recently heard they are under investigation for the baseball try outs.  My son wants to be a PRO baseball player & being able to play high school baseball would be wonderful for him.  Fingers crossed!  The coach did say he would have to be better than average.  And our 16 year old does swim & they have a great swim team as well.  So thrilled.  She doesn't really have to try out for swim.  He said as long as she can get across the pool without drowning she makes the team.  That's how it was at her old school too.  She gets soooo tan even though swimming is a WINTER sport!

We are all just happy to be getting out of Riverside.  We will also be saving several hundred dollars per month.  Our family will be happier for sure for many reasons.  For hubby & I, we have been wanting to for years.  There is much more to do in Temecula & we are closer to San Diego!  Our ultimate goal!

Monday, December 13, 2010

Good days (and bad)!

The last 3 days have been pretty good.  I didn't take my benedryl the other night, so I didn't sleep, so I felt crappy.  But I managed to go with the hubs to the park with the dogs.  Boy are my poor dogs out of shape!  They were slooooooow.  I got out of the house on Sunday & viewed one house in Temecula & today we viewed 3.  We decided on one that works great for us.  It's $500 less per month & it's 1000 sq ft smaller, so we will probably save on utitilies.  It also doesn't have a pool, but it has several community pools.  The schools are great & close.  We are all very excited.  Both the kids are excited & so is my hubs!  Cross your fingers we get the house.  We need a fresh start.  We need to get out of Riverside.

I need to come up with $480 FAST.  Well, by tomorrow to pay for my last 2 weeks of IV meds.  We're not sure how we're going to do it.  I wonder if when they call for delivery tomorrow if they will deny me.  I'm scared to be honest.  We have an escrow closing any day.  Hopefully by the end of the week.  I need a miracle!  Things work out though.  They always do somehow.

Saturday, December 11, 2010

We have to move :(

So we have to move.  I was freaked out at first, but this is for the best.  We can't afford to stay here anymore.  This has been home for 2 1/2 years, but we need to downsize big time.  We are looking in Temecula.  It's about 45 minutes away, closer to San Diego (our eventual goal).  My husband drives out that way for work a few times a week and his eldest daughter lives out that way also.  We went and looked at one house today it had a GREAT view & a gourmet kitchen..  AWESOME neighborhood.  Has a lot to offer kids.  A lot more than where we live, which I thought was just about the greatest place for kids.  I can't even begin to state the great things about that place.  The schools are great too.  And it's beautiful.  But the house was just way too small.  Both my husband & I agreed we couldn't do it.

So the place we are looking at on Monday will allow us to save $500 a month.  That's significant.  It's not as fancy as I am used to.  But I must admit I have been somewhat spoiled.  So I decided that since I am sick & can't work, this is worth it.  We would drop down a lot more, but we have 2 grown kids & 2 big dogs.  We need more room than a tiny 3 bedroom house could afford.  So we found a 4 bedroom (hubs needs an office) that is in the same nice area.  Same California Distinguished school.  This is perfect, less stress for hubby because it's walking distance to the schools & all the parks & sports centers.  I often times don't drive the kids anywhere because I am sick.  He is so busy trying to keep us afloat & the kids have so many things going on that  it's terrible that I can't do all the driving all the time.  When I feel good, I always drive.

One negative for me personally is that I will be even further away from my doctor.  There is a lyme doc in San Diego, but she doesn't take insurance.  But I only go once a month, so it's not that bad.  We just hate driving!
I am going to Malibu next week to see my doc & my BFF is coming with me.  We had so much fun last time. I will be sad to be moving away from her, but it's only 45 minutes & I think her son's father lives out that way, so I can get her to come out.

Good Days
I had a good day today.  Not great but not terrible either.  I got dressed & got out of the house!  Yesterday was a crap day.  The day before was GOOD though.  I can't remember what I did.  I know I cooked dinner.  Cooked my hubby a great breakfast today & made him a great dinner tonight.  He needs some pampering.  Now I need to go do my IV infusion & then go to bed.  I noticed I have had less muscle twitches lately.  Just had one a few minutes ago and that's what made me realize that they are diminishing.  I got my supplements, so I am really getting on those to help my body heal.  Seems like I get about 2 good days a week. I need to start exercising!  YOGA would be great.

Anyone have any left over IV supplies?
If anyone has any left over IV supplies can you please contact me?  I am trying to save money on my infusions.  Right now I am paying $30 a dose @ $240 a week.  I am trying to purchase all my supplies, meds, seperately, that way I think I can pay about $15 a dose.  

Friday, December 10, 2010

I changed the face of my blog

I hope everyone can read it ok.  If it bothers your eyes, please let me know, I am open to suggestions.  I know a lot of my lyme friends, aka Lymeheads or Lymies have trouble viewing certain things on computers, especially color.  Oh geez, I just realized it's almost 1am.  Grrrr.....  Oh well, I took benedryl over 3 hours ago & my first glycine pill as recommended by my doc.  I could go to sleep, but I like being forced to sleep!  I've actually had a capsule sitting on my lips the entire time I messed with my blog trying to get it just right.  I chose the ocean as my background because the ocean is where I feel my best.  The ocean is where I want to be at all times.  Anywhere but my bed or the couch really.

Well, today was a good day.  I got up & got out.  I also got all my supplements in.  YAY!  I am going to hit it hard.  I'll take a pic of my daily regimen when I can remember.  We went and looked at a new place to rent as we cannot afford this place anymore.  If we get this new place, we will save $300 per month.  Is that significant enough to move?  We may save even more because it's smaller, only has 1 AC unit to run (summers are very hot here) and no pool.  I really value everyone's opinion.  The home is very nice inside & the kitchen is AMAZING. The yard is run down & can use some work.  Biggest bummer is that there is no covered patio.  Riverside needs covered patios.  But there are trees all around, so it may work out.  I looked for cheaper places to rent but anything cheaper than that is either way too small or pretty run down.

I hope everyone had a good day today.  Things are looking up in Sonya's world.  I have definitely needed a boost as of late.  I hope I feel good tomorrow.  If I do, the Christmas tree will go up!

Monday, December 6, 2010

I'm baaaack!

I got my laptop fixed!!  YAY!  Okay so here I am Facebooking away, etc. 

A lot of real "crap" has been going on in my life lately and I am not sure if I want to be a big fat downer or not.  Real estate market is crap, we can't get our deals to close (not our fault) and therefore no paychecks.  So we haven't been buying my supplements for about the last four months.  Maybe that's why I've been sick?  I last bought my supplements in August & I started taking them just once a day instead of twice a day to save money.  So my hubby borrowed some money so that I could buy my supplements.  They will be here Thursday.  I still have ac ouple I need to get my hands on, but I will.  I am on a mission to get better. 

I am also working with one of my friends to try to buy my Rocephin separately & buy all the supplies separate.  I have lyme friends from Facebook that are helping me out by sending me their left over supplies.  I can really use extensions, caps, & tubing.  If I can collect a lot of stuff, I will just need to get the saline bags & find a supplier for the rocephin 2 gram vials.  If anyone knows where I can get rocephin cheap, please let me know!!  My friend is working on drugdepot.com right now to see what they can do.

I still need to fight with my insurance company.  I have put it off because I am a procrastinator.  I am dreading the fight.  But I have to fight them.  I don't know if I have it in me.  Same reason I gave up on the disability fight after 2 denials.  Also, my brain doesn't quite function like it used to.  I can't concentrate and I forget most of what I am doing or what I just did moments before.  I went for a walk last night and didn't remember the walk just about 1 hour later.  I thought about it for a while & remembered starting out on the walk & one part on the way back towards the house but I couldn't remember the rest.  I can remember it right now though.  Strange, very strange.

Friday, December 3, 2010

I have no computer

I have no computer.  Well, the kids have theirs & since they are in high school they are writing a lot of papers.  Then my husband is always working on his.  I just snuck on.  Going to be kicked off any second so he can get back to working.

I found out my hard drive for the laptop is under warranty so I ordered a replacement and should be able to install it.  I think.  I have phone support, so that will work.  Then I'll be back on!

Really quick, I lay around most days.  Had 2 good days the week of Thanksgiving (Sunday & Monday).  Sunday we celebrated Thanksgiving with Adam's family & Monday my bestie & I went to see my doc out in Beverly Hills.  We went to lunch at Urth Cafe.  AMAZING organic local food.  TO DIE FOR.  She wants to go with me to my next doc appt in Malibu so we can go to the shops (window shopping) and maybe eat lunch, walk on the ocean, etc.  I love being with her.  We were great roommates back before we got married, etc.

I have a lot to talk about because a lot of going on, but I'll have to catch y'all up later when I have time.  My husband is almost done with his ice cream cone.  Oop, it's gone.  BYE!

Thursday, November 25, 2010

Happy Thanksgiving

Hi all.  I hope everyone has had a wonderful Thanksgiving with friends & family.  It's just me and the husband.  The kids went off to Glamis to go dirtbike riding with the rest of hubbies family.  I knew I wasn't going to be up for it health wise, so we declined.

I have been away from blogging because Rhett, my corw picked the keys off the laptop!!  My husband doesn't really let me use his computer much, so I decided to do a quick post while he is watching TV.

Not much has changed as far as lyme is concerned.  I am having good days.  I had 2 good day recently.  Sunday & Monday.  That was nice because we celebrated Thanksgiving Sunday with Adam's family & then Monday my bestie Angela & I went to Beverly Hills to my doc appt & ended up going to lunch at Urth Cafe.  It was SOOOOOO good.  Organic, local delicious food.  We ended up getting kinda trapped in the elevators & a little lost, & then locked in the stairwell when we decided it best not to get on the elevator again.  But boy that was a mistake, got down 4 floors & had to walk back up the 4 floors & banged on the door until someone let us in.  What if there was a fire???  Sheesh!

Anyway, I am DYING to see a natural doctor.  I need to add something to my protocol.  I need to treat my whole body, not just an infection.

I don't know if I mentioned that my insurance cut me off on November 4th.  I was prepared because I think my insurance company was getting suspicious that my doctor was treating lyme.  Well, I had InfuSource lined up for $30 per dose IV.  So that's $60 a day.  Then I get a letter saying that they knew I had lyme & that they were going to retroactively deny me.  183 doses & 20 nurses visits.  This was AFTER they had approved.  They decided to deny 2 months back.  They can do this?  The cash price the infusion company charges if insurance is not covering is $95 per dose.  You do the math....  $20k is no money I have.  We have already maxed out all of our credit cards treating my illness as my insurance had never pitched in 1 red cent until the IV.  I am thoroughly upset with Anthem Blue Cross of California.  I don't have the mental capacity to fight them, and they know it.  I wish I could cancel my policy that I pay nearly $250/mo for, but I need it just in case of an emergency with my PiCC line & if the lyme causes other problems to my organs, etc.  There are so many things I need to do, but I have sunken into depression because of all of our financial problems.  Financial problems breed other problems.  Many more problems.  I'm afraid that we will lose everything.  If you are disabled by lyme, the government turns it's back on you.  I was denied disability twice already.  The IDSA is bullsh*t.

Monday, November 8, 2010

Frustration and to be honest, a little fear...

I am getting really frustrated being stuck in bed the past 3 days.  It's bad enough when I am just stuck on the couch.  I don't get it because when I first started the IV rocephin, I was the best I had ever been.  I had a GREAT 2 months.  I had even started exercising again.  Then I crashed, hard.  Scary hard.  This was around the 12th of September when my lyme cycle hit.  When I started pulsing, I started to feel better again right away.  I even had a few good days in a row.  And my muscle weakness that had returned had disappeared again.  YAY!  I have done 3 pulses over the past 3 weeks.  I herxed on the 3rd day of the first pulse, then had those 3 good days.  Then on the second pulse, I herxed again on the 3rd day.  The day before the herx I had a good night & went to my nephews birthday party & felt pretty good (nights are always easier on me).  I also made it to my step son's baseball game (night).  But that's it.  Since then, I started my lyme cycle & just finished my third pulse.  I herxed again on the 3rd day HARD.  This was my biggest herx (other than the early treatment herxes) and I laid in bed miserable all day.  My husband was gone, I can't remember where he went.  But I laid in bed all day & went downstairs only when I was desperate enough for something to drink & eat.  I waited as long as I could hoping my husband would come home soon & either bring me something to drink or feed me.  Luckily there were leftovers downstairs that only took a minute to heat up in the kitchen.

Well, now I'm telling a story.  Oh well.  Anyway, I just want to be able to get out of the house and on days where I just have fatigue (I can get up & clean & cook dinner in spurts) I want that to go away.  The only time I have energy to do anything is at night when my family is ready for bed!

I am just wondering if I am ever going to get better.  If I stop the drugs, I'll just deteriorate again & get worse.  But my insurance is most likely going to cut me off soon.  I also need to get co-infections tested, but I have to pay for that out of pocket & we can't afford it.  I just know that if I don't treat the co-infections, the lyme can't go away.  The only testing I have had was through the standard labs & you cannot count on them.

I want to try something natural as well, but there are so many things out there and no studies to back what they claim to do.  I want to go see Dr. H up in the Bay Area, but he charges $650 per hour!  LLMD appointments are usually at least an hour.  I feel like the amount of money they charge is unreal.  Especially for people disabled by lyme.  Knowing that most of our care is paid out of pocket.  In the meantime, I will try to save some money to go see a chiropractor in Yorba Linda that does ART (muscle testing) to see which naturals & antibiotics my body needs.  She had lyme herself & treats a lot of Dr. H's patients down here.  I need to save up $275 cash in order to see her.  Oh bother.....  Lyme disease is a rich persons illness.  You only get better if you have money.

Thursday, November 4, 2010

I missed my doc appt today grrrr....

I was supposed to go out to Malibu today to see my doc & update him on how the pusling is going.  Well, I woke up (not easily), infused, ate breakfast, got out of bed, and my stomach was so upset & didn't know what was going to happen, so I called & cancelled.  It was difficult to wake up, I was still dreaming when the hubs came in to wake me up (my benedryl probably hadn't worn off completely yet).  Then I popped a valium & went back to bed only managed about another hour of sleep because my chihuahua wanted to go play with the crow (aka eat his food).  I am mad at myself now because it was supposed to be 80 degrees at the beach.  I LOVE the ocean, just couldn't get going.  Grrrrr.  I'm mad at myself.  My stomach is better, don't know what was going on.   I know I have been eating like crap, my diet is now worse than it was before I got sick!  I used to be much healthier.  So no more dessert.  That's a good start.  I finished off the brownies last night so there wouldn't be any left today ;-)

The pulsing is going well.  Last week I started my 2nd pulse.  I felt like crap again on the 3rd day, so I assume I was herxing again.  YAY.  I didn't feel nearly as bad as the first week.  That was a kick ass herx!  No seizures or anything, but some good pain, weakness, HEADACHE FROM HELL, stomach ache, etc.

Today is the start of my 3rd pulse.  I think pulsing is a great idea.  I am feeling better in general.  Not great, but better.  I need to get out & walk every day now that I am feeling better.  Should probably jump on my mini-tramp too, but I never know if I feel good enough to do it.  My muscle weakness is gone again.  I'm not sure if it's 100% gone, but the profound part is gone.  I'm still fatigued though because I lay around.  When my fatigue is gone, I am up, out & wanting to do things (usually at night).  THANK GOD & THE UNIVERSE! 

I want to see this chiropractor turned, I don't know, naturopath-type-doctor.  She is in Yorba Linda, but she is $275 for the initial consultation.  GRRRRRR...  money would be nice right about now.  If insurance cuts off my rocephin, I'm screwed.  Totally SCREWED.  I want to see her because with lyme, you need natural aspects, natural treatments & detoxifiers, etc.  She also does ART (muscle testing) to see which drugs would benefit you the best in treating your lyme. 

Wish this real estate market would pick up........  wish I could get a job........... wish disability didn't deny me TWICE!

Tuesday, October 26, 2010

I herxed!

Woo Hoo!  I hadn't herxed since December 21st, 2009.  Well, if i have, I didn't know it.  Yes, I've had flares & cycles, but those have nothing to do with a herx reaction.  So even though I only had mild stomach pains (which an activated charcoal cleared right up), I felt horrible.  I used to get really nauseous while herxing.  This time no nausea, just felt like C-R-A-P.  It was funny though because my husband was asking me why I was smiling when explaining how horrible I felt.  I explained that this was a herx & that means the bugs are dying!  YAY!  Anyway, I have now confirmed the herx beause I came out of it feeling better than before the herx.  So the doubling up on the dose of Rocephn by doing the infusions AM & PM for 4 consecutive days & then 3 days off to allow the body to recover (detox & give organs a break) was a great choice.  Thanks Malibu doc (also my suggestion, he listens to his patients).

So I am going back to LA tomorrow to go to Cedars-Sinai to have my PiCC line looked at.  I have a valve that is stuck on it & it is supposed to be changed every week.  So we are driving out there to see if they can get the valve off without having to give me a new PiCC line.  I really don't want to go through a new PiCC line.  No thank you. 

We are going a bit early so we can meet with a business aquaintance whose office is down the street from the hospital.

Wish me luck!  I have to wake up early.  Grrrr.....

Saturday, October 23, 2010

Saving Money on Meds

I have probably mentioned all of this before, but I felt like I could post so that if people need inexpensive meds, they will know where to go or at least look.

West Aid Pharmacy in Los Angeles has the cheapest of EVERYTHING I have had to get.  They have matched Costco & beat Costco when I speak with RJ there.  I get generic Biaxin, 60 pills a month for $35, this includes my $15 co-pay because my insurance covers only 14 days.  If you have no insurance it may run more like $60.  But that is still cheaper than most anywhere.  FREE OVERNIGHT SHIPPING is totally awesome.  Mine comes by courier because I live in SoCal, but I referred someone to them out of the state & they said they also got free overnight shipping & found the cheapest prices.  When I was on Bicllin, I payed $775 plus shipping per 10 doses elsewhere.  And that was the cheapest I could find until my doc told me about West Aid.  I then paid around $525-$575 (can't remember).  I don't know how they make any money but... OK!  1-800-939-9495

If you are in California and are in need of IV meds (generic Rocephin & maybe others), there is a little known place called InfuSource (not to be confused with Infuserve) in Rohnert Park, CA.  They beat Infuserve America's price.   Rocephin "push": $25 per dose, Rocephin "drip": $30 per dose, Pressurized balls: $35 per dose.  The Push is never recommended.  Infusing too quickly doesn't do any good.  It also ships locally vs flying across the country & so you would save in shipping.  They also have all the supplies you need. They have excellent customer service as well.  Jan answers the phone & Melissa handles billing & really knows her stuff about IV therapy.  707-588-8894

InfuServe America in Florida is a great resource for Meyer's Cocktails, Glutathione, Low Dose Naltrexone (LDN), Methylcobalamin, IV meds, supplies, etc.  I have mostly ever spoken to Rainey there.  She is a very nice lady.  Their website is http://www.infuserveamerica.com/  Their Methylcobalamin wasn't as potent as the one I get in my experience so I no longer get mine there.  Their LDN is more expensive than were I get mine, but they are open to matching prices.   They can ship nationally.

McGuff Compounding Pharmacy in Santa Ana, CA.  I believe they can ship nationally as well.  They are a SUPER high quality compouding pharmacy with very high standards.  I think I pay $33 plus shipping for my LDN.  I was using preservative free methylcobalamin & I was paying $76 for a months supply (3, 1ml vials 25mg/ml).  I was on tiny doses.  I had my doc just write me a script for how he would prescribe (I was still doing it my old LLMD's way @ .12mls per day).  So now I will do somewhere around 1ml per day & I get it for $26 plus shipping in a 30 ml bottle.  CHEAP!! YAY!  1-877-444-1133


You can get syringes much cheaper on Amazon & without a prescription than what you would pay at a pharmacy. 
 
For supplements, you can do a search for that keyword in my google search bar somewhere on the right side of my blog,  I list all the big name supps & show what I found to be much cheaper & equivilent.

Friday, October 22, 2010

Pics, FIR Sauna & Pulsing

Sorry about the picture quality.  My 16 year old step daughter took it with my phone.  I had promised my Facebook friends a pic.  My room is a mess!  How embarassing.  My chihuahua wanted to jump up in my lap the entire time.  So this was my second time in it.  I stayed in it much longer.  This time I just wore a wife beater & my chonies, whilst sitting on a towel on the little chair that comes with it.  I was glistening like stripper on a pole!  I sat in there for at least 20 minutes.  I ended up having to jump in the tub to wash off because I couldn't go to bed like that!  Times like these, I wish I could take a darn shower.

So I went to the doctor yesterday.  Such a smooth drive in.  We left 10 minutes late & arrived a few minutes early.  I love the ocean and if I haven't mentioned this before, the doc's office is RIGHT on the beach in Malibu.  We could go to his Beverly Hills office, but it's more hectic there & there is no ocean scenery.  We usually take a walk on the beach, but hubby was in a rush (2 times in a row, no beach walk).  Here are some pics we've taken at the beach where my docs office is.  It's right by the section of homes where it is gated off & you can't go on that section of beach because GOD FORBID, celebrities would have to look at regular people.  No, I'm kidding, I totally understand it.  They even have a security guard sometimes.  This section of the beach also has a bird sanctuary.  It's pretty cool.  Here are some pics we took back in August I think while there.




Anyway, so my doc changed things up with the Rocephin.  Decided to do 4 days on, 3 days off.  On the "on" days, I do the IV twice a day instead of once a day.  The way we are doing the antibiotics is called "pulsing".  Gives the bacteria a chance to come "out" beause the antibiotics are gone for a few days....then BAM, I start killing them again.  If you didn't already know, the lyme bacteria are super smart & know when to hide in the tissues & when it is safe to come out.  This is why lyme disease & it's co-infections are so hard to treat.  I'm going back in 2 weeks to see how I'm doing & decide if it's working or not.  I'd love any feedback from people that have pulsed the way we are.  Just hoping my insurance doesn't catch on to my doctor.  Hoping & praying...  I'm hooked up to my morning IV now.  Just did one a little over 12 hours ago.  Trying to space them 12 hours apart.  I just got nauseous, which is my way of herxing (I haven't herxed since last December, around the 21st to be exact).  So hubs is going to go grab me a bowl of cereal.  Maybe I just need food in my tummy, I don't believe in a "herx" just because you feel crappy.  I know the difference between symptoms & bugs being killed (die off).  Although 4 grams (4,000 mg) of IV Rocephin  in a 13 hour period is the most bug killing I have ever done in my life!  Maybe I'll get a good herx out of it & kill some bugs.  I'm hoping...  bring on the herx baby!!

Wednesday, October 20, 2010

FIR Sauna

Ok, so my portable FIR Sauna arrived today.  YAY!  I was told to run it at least 4 times to get the off-gases out from the material.  I ran it for hours.  That baby heats up FAST.  I'm quite impressed.  Took just a second to put together & was inexpensive.  I should've opened the window because I was sitting in the same room & I got a headache.  And when the kids came home they said they could smell it. My step son, Evan got in it for 10 minutes & was drenched in sweat.  It's hilarious!  I'll take a picture when I do it tomorrow night.  I think this would be a great thing to do before bed.  I went in while we watched Death at a Funeral.  I lasted about 15 minutes & with my body in there, you couldn't smell the gases.  Eventually with use it goes away.  It took me a while to sweat.  And then when I finally did, it was COOL!  It felt really good.  I can't wait to do it again.  I was wearing a bra & the back got hot, so I had to jump out.  It has 6 levels & I had it on the highest.  HOT!  But getting out felt great.  Now I am SUPER relaxed and ready for bed.  This would be a great way to wake up & warm your joints.  And then help you relax before bed.  Kind of like a hot tub.

Blogspot's photo uploader is down tonight, so I didn't snap a pic.  Not to mention I look like crap.  So, since I need to drive out to Malibu to go to the doc, I'll have at least bathed & maybe put on some make up.  Which reminds me, I need to get to bed WELL before 1am since I need to get up by 8:30am to leave the house by 10am to make it to Malibu by noon. 

I hope the doc changes things up.  Well, he really has no choice, because I cannot go on like this.  SICK SUCKS!


                                                                       












The one I got is the one that you sit in (first pic).  I would have liked to get the one that you lay down in, because it seems very relaxing.  Like you could meditate at the same time. 

Tuesday, October 19, 2010

Detox

I feel toxic.  You know when you drink too much, the next day you have a hangover.  The hangover feeling is usually caused by toxicity in the body fron the sugar & alcohol, right?  When the antibiotics kill the bugs, the die off creates a toxic build up that kidneys & liver cannot keep up with. They have other daily things that are toxic in our bodies that they also have to filter out & dispose of.  So I think I may have issues with detoxing.

A very kind person made a very generous donation through this blog & it came at just the right time.  I need certain things to feel better and since mula is tight, it hasn't been feasible.  I have gone downhill again, fast.  My health can't come before rent, car payments, utilties, bills, kids sports, school, and other activities, so it's always on the back burner.  So with this kind donation, I had to choose between buying my supplements or buying things to help me detox.  I chose the detox. 

Many people have recommended to buy a portable FIR (Far Infrared) Sauna. So with my friends help, I did. It makes you sweat, but differently than regular heat. FIR penetrates deeply into the body & makes you sweat more. Which helps the body to eliminate toxins. So I got a portable one. Should be here in the next couple of days...  CAN'T WAIT!  I just need to figure out a way to keep my PiCC line area from sweating too much.  I think I'll tape a bag of ice to it (I have small gel freezer thingies).

I also bought something else that people swear by, a coffee enema kit. HOW EMBARASSING!! But I am sooooo going to do it. You buy special coffee & the supplies. People say it is amazing. So I am going to do those 2 things & I hope they help.  It wasn't very expensive, I got away with a pound of the coffee & a cheap enema kit that I can reuse several times for $14 +shipping.  I went through S.A. Wilsons.  There is a banner link to their site at the top of my page.  And if you order through my link, I get paid 1%!  I thought that was pretty cool.  I'll let everyone know how the coffee enemas & the FIR sauna go.  I am so scared of the enema.  I've never done one in my life, but I am D-E-S-P-E-R-A-T-E.
 
Going to my doc out in Malibu to see what is going on & why I relapsed.  Hope my husband doesn't get called in for jury duty that day because there is no way I could drive that far on my own.  I don't even go to the grocery store by myself let alone an all day trip.  Wish me luck!

Monday, October 11, 2010

Let's rip this thing out.

I have had a love-hate relationship with my PiCC line.  For the first 2, almost 3 months, I loved it because the medication was making me better.  But now that I have had a solid month with only 3 good days in it, I want this thing ripped out.  All summer, I could not swim (and I was feeling well), wade in the ocean, and I have not been able to shower.  I have to sit in the tub (shallow water) to wash my body & then use the kitchen sink nozzle to wash my hair.  Oh what I would give to be submerged in water!

Now, I need to get in to see my doc.  Perhaps we can try a different IV med.  But what is out there?  And will my insurance cover it?  I cannot imagine what more there is to do to help me.  But I do know that I can't stay like this.  I can't do anything, and I have no way to make any money for our family.  I need to get a job!  I need mula!

Anyway, my lyme cycle hit today (along with my other cycle).  Tomorrow I need to call my doctor to see if I can go in this Thurs.... can't wait anymore.  Next appointment isn't scheduled until the 26th.

Sunday, October 10, 2010

UGH!

I love it how the NFL football players wore pink today in honor of breast cancer.  I thought it looked cool.  Can't figure out how they got their shoes pink though.  It would be awfully cool to see them wear lime green one day. 

Still feeling crappy, but I had 2 good days in a row.  Yesterday I made it to the last half of my step sons baseball game and today my step daughter & had shopped at Target.  I love Target, but I was reluctant to go for political reasons.  I betrayed my beloved gays!!  Oh well.  I love the products & hey, I need to save money!  I even went for a 1 1/2 mile walk with my step daughter tonight.  I told her I'm getting flabby & since I can't work out anymore (last month was a different story), the only thing I can do is walk.  My leg weakness is back, but it doesn't take much to walk.  I am going to try to do 2 miles at least 3 times a week.  I can't stand what lyme has done to my body. 

Oh, my friend from Idaho Trish is in town visiting.  Her daughter moved to San Diego so she is staying with me & driving out to visit her a few times.  It's  nice to hang out with Trish and her youngest baby boo Aaden.  Aaden will be 2 end of December.  He is THE BEST baby!  Rarely fusses or cries & pretty much is happy 24/7.  He's lovely.  Has been since the day he was born.  Aaden was born with down syndrome and so even though he is almost 2, he is still pretty small and is more like a 10-11 month old child, just a bit smarter & was easier to care for.  He is a blessing.  It's nice to have Trish around.  We used to spend so much time together when we were single.  She pretty much lived at my house.  It's nice to have someone around again.....

Well, I have a doc appt set up Oct 26th, but I think I will be going in sooner.  Not sure what is going on, this is the worst month I have had in at least 6 months.  3 good days out of a month is just insane.  I am going to attempt coffee enemas if I can get my hands on all the equipment.  I am terrified of an enema, but people swear by it for detox.  I very well could be toxic.  That would explain the constant hangover feeling, but to me, it doesn't explain the muscle weakness that returned.  My only explanation is treatment failure.  UGH!   

Monday, October 4, 2010

Eclipse Home Pump vs gravity drip

Well, rocephin was good.  No, it was great!  Notice I said WAS.  nearly 3 months into IV  Rocephin, I switched to the balls from the pain in the butt gravity bags that drip from that long pole.  I was becoming more mobile & thought my medication should too.  But as soon as I switched I went down hill & FAST!  It came as the same time as my normal Lyme cycle.  On rocephin , I skipped an entire month of a Lyme cycle so I had 2 months straight of good days.  That would explain my absence from Facebook & this blog.  When I feel good, I am living!  I don't even want to think about Lyme disease.  Like it is already a long lost memory.

Well, Lyme cycle hit, and this time it was a bit worse than normal.  But I thought nothing of it.  I know my body & I know this disease in my body.  I know that yes, the bad days are pretty horrible.  I am cranky, irritable, in pain, feel like crap, and almost wish I could detach my head from my body & just put it on ice until it all passes.  But this time, after my usual 4 days of torture passed, I started to get worse and worse.  It used to take me 3 weeks to pull out of cycle.  But with a year of treatment, I was doing 3-4 bad days a month!  I can live with that.  12 days passed & I decided that something was just wrong.  I felt just about as bad as I did 5 months prior.  This wasn't good.  Joint pain, malaise, neck pain, headache that felt like my brain was going to swell out of my head, muscles twitches at an all time high, muscle weakness & shakiness, muscle pain & BELLS FLIPPIN' PALSY!!  I only get it in my forehead, so you can't tell, but my forehead was numb again!!  Only things that have changed were that I ran out of my LDN the past couple of weeks & while waiting for a paycheck, I couldn't refill it just yet.  That, and I switched from IV gravity to those darn balls.  But it's the exact same meds/solution, just different way of infusing.  It takes less time & the Eclipse Home Pump is a ball that is pressurized in a balloon that gives you a steady stream.  It's neat because you can just throw it in your pocket or purse & go.  It also takes a minute to get it set up versus 10 minutes to set up the gravity.

So I am sick & desperate & consulting with my online Lyme friends to see if any of them had gone through a similar spell while being treated with rocephin.  Nope, must be treatment failure.  NOOOOOOO!!!   I have my insurance miraculously covering all of this, nurse, meds, supplies, etc.  I can't have to change to something they won't cover.  So I spoke with my Lyme friend Melissa who lives in PA.  I was asking her how she was doing.  She had gone from Rocephin to oral antibiotics (had to quit because $800/wk was probably killing her) and last I had talked to her (months ago), she was doing well.  So I got her update & she is doing great.  She asked about me & I told her BAD, I am doing really BAD.  I explained any changes, and when I mentioned the ball (Home Pump) she said, THAT'S IT!  She said her LLMD (Lyme doc) told her that she is to infuse over a long period of time.  I told her the pump went in about 20 minutes & my drip bags take about 35 mins to an hour.  OK, that gave me some hope, and my husband was saying all along, "It's those balls that are making you sick!".  So I experimented, I had 2 balls left & would have to wait for a couple of days for a new order.  So I used the clamp to start & stop my ball so it would last over an hour.  10 seconds on, 5 seconds off.  Yes, this was tedious, but this is my health & my life we are talking about.  The next day, I woke up feeling better.  Was it a coincidence?  So I have had 2 decent days since.  One day I got out to my step son's first baseball game.  And made it to Costco without too much trouble.  And today except for the lazy feeling (fatigue) I feel pretty OK.  So with 2 weeks being on the ball & now about 6 days back on gravity, either I am recovering from my relapse of symptoms, or I am coming out of my cycle.  I may never know.

My Step Son Contracted Lyme Last Week!
On another note.  My step son went to the baseball field to practice with his winter ball team & wore shorts.  They were just doing conditioning that day.  The next day he had a big 'ol bite on his leg.  No biggie, just looked like a spider bite.  Stuck a little benedryl on it.  The bump/bite healed & was gone.  Until Sunday.  He comes home from his grandparents house & says, "look what showed up where my bug bite was".  It was a bulls-eye rash!  So I took a pic of the rash & posted it on my Facebook & Twitter asking people what they thought of it.  I kind of doubted that it could really be Lyme.  I mean, what are the odds?  Two of us in one family infected witihin 1.5 years of each other.  Mind you, we live in a place that the health department and doctors swear there is no Lyme.  Everyone said, "Bulls eye, bulls eye, bulls eye".  Then I went online & looked for pictures of Lyme bull eye rashes.  Because it wasn't a total Target logo.  But here they were exact matches of the rash that were confirmed Lyme cases.  SHIT!

So I called the hubby because I was too sick to drive & I said come home NOW & take him to the doc.  They get to an urgent care & the doc had the where with all to know a Lyme rash when he sees one.  He said that blood tests are not accurate enough & the rash counts just as good as any positive Lyme blood test.  He wrote a script for a pathetic 10 days of doxycycline of a low dose (100mg twice daily).  Lucky for me, I already knew this boy needs 200mg twice a day for 30 days, not 10.  So that's what he is on.  He is really tired constantly, but so far that is all we see.  He is still playing baseball & the rash started to go away pretty quickly by the next day.  I called my lyme doc & he said that's from the doxy doing it's job.  Let's hope this cures this kid.  It was about 5 days after his bite that he started treatment.  He is 14 years old so he is old enough for doxy.

Wednesday, August 18, 2010

Almost 6 weeks into Rocephin

Friday will be 6 weeks that I started 2 grams of IV rocephin once per day.  First few days I was sleepy, then I felt pretty darn good.  Felt like exercising!  Then I was fatigued for 9 days.  Then I as fine, but then my lyme cycle hit.  I think I am now on 6 weeks cycles.  WAY more good days than bad now.  Since I started Bicillin injections in November, it has been a slow but steady incline in my health.  I am very lucky.  Any herxing I had was at the very beginning of treatment and was very minimal.

I went to the great doc (I love my doc) in Malibu last week & he said we'd be doing at least another 4 weeks of the Rocephin.  He said that all my blood work is fine, so we will continue.  I am happy because I know of people that have come a long way with Rocephin.  I am especially looking forward to the brain fog lifting.  I hope it goes away, or lessens soon.  I have barely a short term memory & word recall is terrible.  I always say "please hand me that thing"  or "put it on the thing" or "I cleaned the thing today".  Hubby gets frustrated with it, but he's much better than he used to be.  Before we knew what was wrong with me, he used to get extremely frustrated with me & it would cause arguments because I couldn't remember what things were called, or I called certain things by a different name.  I haven't been able to take my brain supplements for months as money has been tight, I haven't been taking many of supplements I was.  So maybe once I start them that area will once again improve.  I will be ordering them all again soon & see if that helps.  I am also going to try cordyceps  (it's a supplement) to see if that helps with anything as it's supposed to help with adrenal fatigue.  I really should start up Lauricidin again to fight all of my viral infections, but it's hard to want to take when it makes me feel worse.  And I have plans coming up.  Including my 1 year wedding anniversary.

I want nto nnnmnnnmnbnggfgfgfgffffffffvvv

That was my crow helping me type this.  I took a picture.  I will try to figure out how to post it.  I got a new phone & can't remember how I had it set up last time to be able to post pics to my blog.

He was a baby then.....
Anyway, just hoping that a lot of my word recall comes back.  My muscles have been improving though, so that's good!!  I tried yoga the other day from Fitness TV and managed to get through 8 minutes.  Wowee.  I thought I'd be able to do the whole thing.  Nope.  But I can walk a couple miles & clean the crap out of my house, no problemo.  So........

One year anniversary of being sick.

August 14th marked the day my life was turned upside down by Lyme disease.  Little did I know that those strange symptoms would last this long.  Every day that I went to sleep at night I figured I would wake up feeling much better & whatever was ailing me would go away.  But it never did.  Lyme disease is a disease I don't wish on anyone.  People don't understand it, so they treat you like a hypochondriac.  I had to learn not to talk about it.  Because it was obvious that they didn't want to hear it.  This last year has been the worst year of my life.  My friends & family have never been able to understand what this is like for me.  And I know they have often thought all of this was in my head & probably still do.  Or I could just make it go away if I just thought positively.  If I didn't focus on the disease.  TRUST ME, all I would do is tell myself I was getting better, & I would thank God & the Universe for my healing.  Every day. I repeated it over & over.  Whenever I would see a sign of healing, I would take it & run with it. 

Lyme disease is a very lonely disease.  It's different than having cancer. Cancer has a proven treatment, thousands of doctors & a government that acknowledges it & treats it. So when you have cancer, it's OK to feel sick.  But not with lyme disease.  With lyme disease, you are just lazy & bringing all of this upon yourself.

 Please make sure everyone in your life wears their bug spray when they go to a park, playing on their front lawn, going camping, hanging by the lake or the river, hiking, gardening, etc.  I don't want this to ever happen to anyone else.  It's not just a physical illness, your family & friends will bail on you.  Plain & simple.  I don't know a single person with lyme that this hasn't happened to.  As you get better though, they will slowly come back around.  But you don't ever forget how they treated you when you needed them most.  Sorry, I'm still a little bent out of shape about this.  Not having anyone to talk to about what I was going through has been the hardest part.  Being locked up in your house every day, 24 hours a day for days, weeks, months at a time with the rarest of visitors or phone calls.  I am lucky to have my husband & the support of the people that I have met online.  Without my "virtual friends" this journey would have been a lot darker & who knows where I would be right now, if here at all.  (I love my dogs.  Two of them just came up to me & gave me a kiss).  They know I am hurting.

Friday will be 6 weeks that I started 2 grams of IV rocephin once per day. First few days I was sleepy, then I felt pretty darn good. Felt like exercising! Then I was fatigued for 9 days. Then I as fine, but then my lyme cycle hit. I think I am now on 6 weeks cycles. WAY more good days than bad now. Since I started Bicillin injections in November, it has been a slow but steady incline in my health. I am very lucky. Any herxing I had was at the very beginning of treatment and was very minimal.  It usually included extreme nausea & feeling like I had food poisoning.  My body & head hurt & it was pretty much agony.  1st herx lasted 5 miserable hours.  2nd time that happened it lasted for 2 hours.  And then my herxing was diminished to just mild nausea off & on.  It usually occurred the day after an injection of Bicillin, so I know that's what it was.

I went to the great doc (I love my doc) in Malibu last week & he said we'd be doing at least another 4 weeks of the Rocephin. He said that all my blood work is fine, so we will continue. I am happy because I know of people that have come a long way with Rocephin. I am especially looking forward to the brain fog lifting. I hope it goes away, or lessens soon. I have barely a short term memory & word recall is terrible. I always say "please hand me that thing" or "put it on the thing" or "I cleaned the thing today". Hubby gets frustrated with it, but he's much better than he used to be. Before we knew what was wrong with me, he used to get extremely frustrated with me & it would cause arguments because I couldn't remember what things were called, or I called certain things by a different name. I haven't been able to take my brain supplements for months as money has been tight, I haven't been taking many of supplements I was. So maybe once I start them that area will once again improve. I will be ordering them all again soon & see if that helps. I am also going to try cordyceps (it's a supplement) to see if that helps with anything as it's supposed to help with adrenal fatigue. I really should start up Lauricidin again to fight all of my viral infections, but it's hard to want to take when it makes me feel worse. And I have plans coming up. Including my 1 year wedding anniversary.

I want nto nnnmnnnmnbnggfgfgfgffffffffvvv

That was my crow helping me type this. I took a picture. I will try to figure out how to post it. I got a new phone & can't remember how I had it set up last time to be able to post pics to my blog.

Anyway, just hoping that a lot of my word recall comes back. My muscles have been improving though, so that's good!! I tried yoga the other day from Fitness TV and managed to get through 8 minutes. Wowee. I thought I'd be able to do the whole thing. Nope. But I can walk a couple miles & clean the crap out of my house, no problemo. So........

Tuesday, August 3, 2010

Video of me having my PiCC dressing changed.

Doing my infusion, hubs didn't turn on the flash & we were in the middle of cooking dinner so my kitchen is a mess.
Flushing the line.  You can see the sock on my wrist that I cut for a PiCC cover.


This is  Dry Pro PiCC cover.  Doesn't work for me.  I was hoping I could go swimming, but nooooo.  Mine leaks.  So no showers.  I just sit in 2 inches of water & bathe.  And to wash my hair, I do it in the sink.
So I got my PiCC (as you know) and the first 2 days. No pain what so ever! Then I slept on it. OWIE!! So I had throbbing pain for day & then didn't sleep on it, & it lessened a bit. Then I slept on it again. UGH! This sleeping thing is hard to do since I am a side sleeper & my favorite side is the side my PiCC is on. Go figure. Also, we have this ugly itchy, scratchy, tight gauzy thing they give you to cover the line. It's too tight & I only have 8 inch biceps! How do normal people wear that? Sheesh. So from the Facebook friends that have come before me in the PiCC/lyme treatment, I got some good advice:  Get a sock & cut it.  So I did.  Much better.

I have been away from blogging for a while.  Every time I start to blog, I get interrupted.  But this is a good thing.  That means I am not laying in bed all that much anymore.  When I first started the IV Rocephin, I was sleepy for a few days.  Then I suddenly felt a little better.  Had some strange issue after day 4 where my neck & upper chest felt pressure, but it eventually went away.  And I even felt like I could exercise.  So I did.  I jumped on my rebounder (mini-tramp) 500 jumps.  I was told not to get into the cardio zone, so I stopped & started.  But the next day, I was done.  Haven't exercised since & I think I have only spent 1 or 2 days  in bed.  Today, I had to run up my stairs & I realized it wasn't horribly painful.  So I will definitely work out today. 

I am very pleased with my home health nurse.  He is awesome & so knowledgeable about the world.  So he is nice to be around.  I am pleased.  He used to come every day in the beginning.  Now he comes once a week to draw blood & change my PiCC line dressing.  That is something I need to learn how to do on my own though in case insurance cuts me off.

So far, nothing drastic has been noticed, but my symptoms have definitely been reduced.  I am just waiting for my cognitive stuff to clear up.  I would like to be able to recall the names of things again.  :)

I also want to go back to do the MedSonix treatment again.  As I think it truly was a tool in my recovery.  My joints have not bothered me at all since those 3 treatments.  And I think I have only had 2 headaches since.  And both were very minor.

I have had a yeast over growth due to the IV Rocephin & the Biaxin, so I am on 10 days of Duflican & doubling up on my probiotics (when I can remember).

Tuesday, July 13, 2010

Picc Line


Ta-Daaaaa!  There it is.  Was a piece of cake.  I am sooo glad I went to Cedars-Sinai to have it done.  Truly a great experience.  That hospital has the best patient service I have ever seen.  EVER.  They even called me yesterday to ask if there was anything they could have done better!  I said nope.   Everyone I spoke with from the first phone call to the Procedure Center to every registration call after that, to the cookies & OJ they gave me afterwards.

So I lucked out with who placed my PiCC & I lucked out with the RN as well.  Most lymeheads I talk to say their nurse "got in their way" or made things worse, or weren't careful or sterile or pulled on their line, etc.  Not mine!  Dalmor is one of the smartest, most interesting people I have ever met.  He is very thorough.  I am very happy to have him.

 Up until yesterday all of my infusions had been going very well.  No problems what so ever.  Just some heart palpitations, but I was warned by other rocephin IV users that that could happen.  Yesterday I felt a tightness in my throat.  And after the infusion, we drew blood through  my PiCC line.  I felt a tightness in my upper chest.  Not over my heart, but right under the front of my neck.  It was only bothersome at first, but it continued to worsen to the point of being uncomfortable.  Otherwise I was fine, I could swallow fine & breathe fine.  But if I leaned forward only slightly, I would feel an immense amount of pressure on my lower neck (throat area) and upper chest.  So I took a benedryl (just in case was allergic reaction) & went to bed a little freaked out.  Well, I stayed up & had my friends on Facebook freak me out.  Telling me I should  never have blood drawn from a PiCC.  WHAT?  I was always told I wouldn't need to get stuck anymore for blood draws.  Anywho- I won't do it again just in case.

So I called my nurse this morning.  He said that when he comes this afternoon he will change the dressing (my arm got sore 2 days after PiCC was installed).  We are going to peek under the dressings &  make sure all is fine.  I faxed a note to my doctor explaining what I was still experiencing this morning when I woke up.   He called me immediately & gave me his cell phone number to have my nurse call him when he gets here.  That made me feel good & I promise to never use it.  Unless I am dying.  Then that promise is out the window.  Ahhhhh, I love my doctor.  And have I ever mentioned that he takes my insurance?  Oh and that he listens to me?  And has zero ego (well, if he does, I haven't seen it yet).

I'll post again and let everyone know if we can get this figured out. 

Monday, July 5, 2010

PiCC time

I went to see my doc out in Malibu last Thursday.  We talked about my increasing joint pain, etc.  Decided it's time to Be Aggressive, B-E Aggressive! (If you were a cheerleader, you know).  So we are going to try at least 6 weeks of IV Rocephin.  I'll let everyone know when this is going to happen.  I want to get it done at my docs hospital Cedars-Sinai.  They really know what they are doing with PiCC lines & I am a wimp, so that's probably the best place to go.  I'm going to call my docs office today & see what's going on with that.

The day of my appointment, we decided to take our 16 year old & one of her friends with us to Malibu.  After all, my docs office is literally seconds from the ocean.  So we joined the girls at the beach.  Where we went to the beach there also happens to be a bird sanctuary.  There were hundreds of cool birds.  GIANT pelicans flew over our heads.  We made some bird friends while we were there.  There were a lot of jelly fish that had washed up on shore.  We had to be careful not to step on them  It was a lovely day.  Until we got up to leave.  My husband so kindly pointed out that the backs of my legs were FRIED!  I forgot to put sunscreen on the backs of my legs!!  I am still burned badly & it's been 4 days.  I have never burned like this in my life (well except for the time when I was going to college & I went in a bad tanning bed & ended up in bed for 3 days vomiting from sun poisoning).  Can you say PAIN?

Wednesday, June 30, 2010

Medsonix

So last week I felt like crud until the day before we were going to leave for Vegas.  Hubby & I were up late preparing to leave for the next day.  Thankfully I started feeling much better as I was hoping I'd be up for some site seeing.  We were making it a family vacation & wanted the teens to enjoy themselves.  It was about 105 degrees & I don't do well in the heat, but I did OK.  When we arrived in Vegas we headed straight to the MedSonix place to do my first treatment.  I was told that for lyme I would need 1 hour treatments. 

My step-son Evan was walking like he had been on a horse for a couple days so we put him in with me for the first half hour.  He started a rigorous baseball practice for All Stars & his legs were super sore.  He was walking normal after that & said he felt much better.  We kept asking him for the rest of the day because we weren't sure if it was just a placebo effect.  At the end of the long night of site seeing that night, he said his soreness was returning a little bit.  But by morning he was fine.  Hmmmm....

I noticed nothing after my first 1 hour session.  I had pain in my legs that night while walking around but we wanted to get in as much of the attractions as we could.  Needless to say we got very little sleep for the 2nd night in a row.  I don't do well without enough sleep & felt ill when I first got up the next morning for my 2nd appointment, but once I started moving I felt much better.

I forgot to mention that my hips, knees, & hand joints had been really bothering me lately.  Started about 2 months ago & had been progressively getting worse.  I was in tears from my hip pain 2 days before we left for Vegas & tried to finally plunge into my Ketamine pain meds.  I realized they were long expired as they were compounded & the pharmacist said he didn't know what would happen if I took it anyway.  So I didn't.  I just popped a 800mg Motrin.  In a couple hours I was feeling better.  But this joint thing is concerning me because it has never been an issue for me up until the last 2 months.

Okay, so hips & knee really bothering me while on my way to 2nd appointment.  First half hour I was in with a group of people that go there every Monday & Thursday.  They all knew each other & were so friendly!  They explained to me how much MedSonix has helped them & why they come. There was a husband & wife there and they brought along his father & her uncle.  There was another gentleman that sat next to me that is one of the spokespersons for MedSonix & he was explaining things to me.  He used to be the host of Real TV.  Remember that show?  I loved watching it & still catch a rerun anytime I'm channel surfing & it's on.  Everyone was asking about lyme disease.  2nd half hour treatment a nice older couple came in.  It was their 2nd day coming.  They had come the day before & said it helped them so they decided to come again the next day.  I am not sure exactly what they were there for but I do know that the gentleman said that it helped his grumpy disposition.  Maybe I should have had my hubby do a session or two ;-)  After that session my knee wasn't bothering me anymore.  Hips still sore & stiff.  But as I walked out of the building to the car, I said to my husband, "Despite little sleep for 2 days & this heat, I'm feeling better!"  We went on to site see for hours again that night.  Way less pain, again, little sleep.

Woke up for 3rd & final session feelin' good.  Did one hour, still feeling great.  I was so surprised I was able to walk & walk & not rest at all during this entire trip!  Went to the pool for a bit in the heat with my step-son & we sipped virgin pina colada's & margaritas.  Then we needed to get our butts on the road home.  We didn't want to leave!! Such a great time!

I have been home for 5 days & have been doing great!  I said to my husband that I wanted to exercise!  I have been having no trouble walking up the stairs or getting off the couch.  My joints have not hurt me AT ALL.  I do not know yet if it was the MedSonix or the way my lyme cycles.  I know this time of the month I am usually doing pretty good anyway.  I see my doctor out in Malibu tomorrow & if hubby isn't too busy with work we are going to hang out by the beach for a bit before we head home in MONSTER LA traffic. I should be going back to do at least another session (three 1 hour treatments) of MedSonix next month.  I will let everyone know how it goes :)  As it is something that you would need to do monthly for a while.  I don't think MedSonix is a cure for lyme disease, but I do think it could be a great tool.  It reduces pain, reduces inflammation, & increases circulation.  It is totally non-evasive.  You just sit in front  of a box that makes noise.  If you don't like the noise you put on headphones that play relaxing music.  That's it!

What exactly is MedSonix?  http://medsonix.info/
To to their website for testimonials & videos.  They have the place in Las Vegas, NV & Naples, FL.

Friday, June 18, 2010

Scarlet saying good morning.

This is my beautiful baby girl Scarlet.  Rhett (her brother) said hello too, but I can't figure out how to put up both pictures on the same post.  She is somewhere between 2.5 - 3  months old.  Notice they still have blue eyes & their beaks still have pink on the sides.  They just learned how to eat on their own about a week ago but still I still need to feed them every once in a while (it's like they forget).  But they are the SMARTEST creatures!  I love them more & more every day.  Today they learned how to fly when I call their name & land on my arm. 

Soon they will be old enough to go out & play & fly in the trees during the day & come in before dusk so they don't get eaten or bit my mosquitoes.  One of these days I'll post a pic of them the day I found them.  You'd hardly recognize them!!

Friday, June 11, 2010

Trying an alernative treatment & my baby crows

June 23-25 the fam bam & I are going to be in Las Vegas to do an alternative treatment called MedSonix.  I have personally met two people randomly that recommended it.  You can read more about other's experience at lymesucks.org & Better Health Guy.  I am very excited to try something non-evasive.  It's basically a box that produces a low frequency acoustical sound wave that is supposed to reduce inflammation in the body, reduce pain, & increase blood circulation.

I am also excited to get out of town.  I have never gone to Vegas without going to the clubs, casinos, & gambling.  And since we don't have the money for that kind of thing (nor do I have the energy or ability to party), we are taking the kids!  A little family vacayYAY!  So we got a cheap room at The Orleans for $35 a night.  Going for two nights & found a bunch of free sites & activities through the Vegas.com website.
My mom is going to come stay at my house to dog & crow sit. 

I probably forgot to mention that I saved two baby crows' lives over a month ago & they are still living with us until they can be released during the day & called in at night for safety reasons (West Nile mosquitoes & other predators).  That is if I can get them trained.  They were tiny babies with no feathers when I found them & I have hand fed them.  Crows don't learn to eat on their own until about 2.5 months old, & they are just now learning.  But they are a handful so I can't wait for them to be able to go outside for the day (and hopefully come home at night).  Wish me luck!

Thursday, June 3, 2010

So far so good with Biaxin

So we added Biaxin last week at my doc appointment.  It was delivered overnight and within 6 hours of taking the first dose (500mg tablet) I started getting a buzzing in my ear.  The dreaded TINNITUS that caused me to stop taking Zithromax right away.  That stuff can be permanent & can even cause hearing loss.  I couldn't deal with a constant ringing in my ears for the rest of my life.  Never ANY silence??  No way.  But I decided not to bail on it.  I need to be able to take things to kill the different types of bacteria that have invaded my body.  So like a trooper, I took the second dose of the day.  And besides that god awful metallic taste in produces in the back of your mouth, I am tolerating it.  The tinnitus hasn't gotten worse, and I can only hear it when I am laying with my head on the pillow & another pillow over the other side of my head (the way I block out morning light that shines through my blinds). 

I ordered another 30 days worth of Biaxin from Westaid Pharmacy & paid only $50 for 60 tablets.  And they overnighted them to my house FOR FREE.  They rock.  Nicest pharmacy I have ever called & they are on the ball.  So again 1-800-939-9495.

I haven't herxed or anything from this new antibiotic.  And I wonder if I will because I am using it to treat Mycoplasma.  So far, so goood.

Oh, we did another garage sale last Saturday and I made $517!  YAY!  Then another $50 yesterday from a donated dryer & I still have a couple of really nice desks to sell.  I need to put them on Craigslist.  Should get another $125.  One is brand new in the box (glass top computer desk).  The other is a 3 piece solid wood set.  Desk, hutch, & file cabinet. 

I still haven't started the True2Life detox yet because I didn't think it was a good idea to start two new things at once.  Being that I was starting the antibiotic.  So I will have to pick a day to start the detox.  Maybe today??

Thursday, May 27, 2010

Bicillin injection - Finding blood!

Okay, this was the first try. Sorry for the F Bomb. But if you find blood, & you inject or forget to aspirate, it can kill you. Means you are in a vein.

Bicillin Injection

Sorry about the F Bomb!!!

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!

Saturday, May 8, 2010

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.

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!