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


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


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.