Moving Week

I moved last weekend.  The house was a shambles this week because hubby & kids were busy with work & school.  But today, everyone busted their butts & most everything is done.  We still need to work on our bedroom though.  Had to sell a lot of stuff because this house is so small.  Such a bummer to sell things you paid good money for, having to sell them for half or less than half.  Since we are renting, we won't be living here forever, so I like to hang on to things.  If we move, we will have to buy more to replace them.  Aaaah, such is life.

So we are settled in.  Feel totally at home.  I guess when you move all your stuff in & your family & pets are here, it is automatically "home".  Remarkably, Rhett did VERY well.  I was freaked out at the thought of having to put him in my dogs crate & transport him for an hour in a car.  But he did great.  Not a peep.  He was nervous, but not completely freaked out.  And just like the dogs, once he saw all the familiar furniture & his cage,  he too settled right in.  There isn't much room for his cage so we had to get rid of even more furniture!

How I'm Doing


I have been doing well.  Had only 2 days where I didn't want to get out of bed.  So that's good.  I am still not to the place I was this past end of June, July, August, and first couple of weeks of September.  In September I had a relapse, but now I am slowly coming out of it.  I had a good 1 1/2 weeks before Christmas but my family had a cold going around  & I got it.  That floored me for a while, but I am coming back.  It was actually nice to have a healthy persons illness!  


I have mentioned previously that I had ordered some Lyme Defense Tea from www.MistyMeadows.org .  It is based on the Buhner Protocol.  A protocol that in my gut I feel is the best natural protocol for me.  I have been following different forums & groups based on the protocol.  The book that was written for this protocol is called Healing Lyme.


I am going to buy the book & read it just for information, however I don't think I could strictly follow a protocol.  Too many pills.  I hate pills and already take a gazillion & I always forget to take things on time.  For instance, my probiotic.  I only take 1 a day and I often forget it!  That is why I have the tea & it is exactly what I am looking for!  It tastes good, I add honey, but the Misty Meadows place says to use raw honey.  I will get my hands on some.  Right now I am using regular honey  I drink 32 ounces per day.  I am not sure if it's the tea that's been helping me or not, but I am coming out of the relapse.  Still have fatigue that really bums me out, however, I am getting out of bed every morning & I don't get back in until I go to bed at night.  This is a good sign!  I just ordered more tea, and I also ordered some teasel from the herbal shop.  I am afraid to take teasel because I hear people "herx" or get very ill from it.  I will start 1 drop at a time.  I have a Facebook friend that is going to start it with me since we're both scared.

I just started following the Salt/C protocol group on Facebook.  I am not saying I am going to do it, but I joined a group to watch for a while & see how people do.

We moved!

Oh wow.  This weekend was moving time.  Even though my husband drove a trailer & truck load almost every day for 2 weeks, we finally finished Saturday night.  We had a LOT of help!  Thank you for good friends!  Good thing I was blessed with decent days & I was able to contribute.  Today I am worthless.   Can barely move due to exhaustion.  No pain, just total fatigue.

It's 7pm, so I am getting ready to go crash.  I still have to do my IV infusion though.  I didn't get to it until about noon today, so it'll be early.  I hope I feel better tomorrow.

Kids start their new school tomorrow!

SpiroChicks: Lyme Awareness: Vote My Lyme Recovery Story to Top...

SpiroChicks: Lyme Awareness: Vote My Lyme Recovery Story to Top...: "By Alix, SpiroChicks Co-founder I just entered my Lyme recovery story into a contest at Natural News TV. Please vote for it to raise Lyme awareness"

Click on the blue link above to view the great video & hopefully you will vote for Alix's video.

My friend wrote an e-book on how to do IV for lyme disease.

http://InfusingForLymies.com


Check it out. It's a great e-book of a collection of info to help make getting IV meds, how to do it on your own, etc. Also some great supplements, books, and detox info.

Sick As a Dog - My Immune System is Kicking In!

Monday I woke up & I was sick.  I had a cold!  Tuesday I was a bit sicker, and Wednesday, I was REALLY sick.  I was actually a little worried.  When my wonderful nurse came to change my PiCC line dressing, I had him check my blood pressure, my heart rate & listen to my lungs.  My heart rate had jumped to 112 bpm at rest.  It had me a little freaked out.  It lasted for a while & by the time my nurse checked me over I was at 98 bpm.  My blood pressure was normal & he said my lungs sounded good, so he was just concerned about the heart rate.  But I explained to him it happens off & on when I am really sick, so as long as it stays below 100, I'm ok.  I felt a lot better on Thursday & by Friday I was feeling almost normal (normal for having lyme disease).  I even went out on a dinner date with my husband last night.  After getting all ready, I was exhausted.  But we enjoyed our Thai food.  But after that I was wiped out.  Today I still have left over cold symptoms, but I am happy this happened.  I think this is proof that my immune system has started to kick in.  I never caught an actual cold since my illness (17 months).  I have caught the virus when it went through my house, but I just get really lyme sick.  When 2 family members got the cold before Christmas, I know the virus was in my body because I spent over 2 weeks sick.  I remember sneezing once in the bathtub and thinking, "I haven't sneezed since I got sick!".  My immune system is kicking in!!

On another note, and not so good news:  I got an email from a friend who tried to refill her Rocephin at Walgreen's and they realized they are charging too little.  UGH!  I thought I had caught a big break!  I have another option, which is DrugsDepot.com, but they charge $5.40 per vial so instead of paying $21 for 10 vials, I have to pay $54.00.  It's not the end of the world, but times are tough!

I started a new blog

I started a new blog about the food I cook.  Cooking is one of my passions (but only because I like to eat good food & no one cooks for me).  Check it out!

http://dinnertonight-easyrecipes.blogspot.com/

Lyme Basics

I am a member of a Yahoo group called CaliforniaLyme.  Today someone posted this wonderful write up on the Basics of Lyme Disease.  I asked her permission to post it to my blog.  I think it is great information for anyone who may have lyme or knows someone with lyme.  Thank you Cynthia!

"As there are always "newbies" joining our group who have the same basic questions, I thought I'd put out a lyme basics posting.  This only represents the most general information.  Doctors who treat this disease are few and far between, and they are often VERY busy.  So, you should be prepared to do your own research and own some responsibility for getting your health back.  Anyone new to our group should take the time to investigate the topics covered here in all of the past publications of the Lyme Times at www.lymedisease.org and order the back copies.  They are a treasure trove of information.  

Doxycycline is the standard antibiotic (abx) for treatment of lyme recommended by the CDC, but here is what my LLMD explained to me, and I present it in lay person's language.  Bear in mind that there are many, many differing opinions within the medical community regarding treatment of lyme, and what I'm saying here is not by any means the be-all and end-all of discussion.  Hopefully, it will give you newbies a starting point.

Doxy can be effective at eliminating Lyme when it is diagnosed within 2-4 weeks of infection.  It is among a class of abx (the Tetracyclines) that are useful at eliminating bacteria from the blood.  However, there are 2 other classes of abx which should be involved in the treatment for an infection with a longer term of exposure.  

Since the Bb bacteria is a spirochete, it has the ability to imbed in the soft tissue:  joints, muscles, nerves.  It begins to do this within 2-3 weeks of infection.  And it can penetrate the myelin shield of the spinal chord and brain.  If more than a month passed between infection and start of treatment, you will probably need a round (often a very lengthy round) of a second class of antibiotics (penicillins and/or third generation cephalosporins) which can also penetrate the soft tissue and get to the bacteria there.  

Finally, when under attack from abx, the Bb bacteria will spiral down into a ball and form a protective shield around itself (called the cystic form).  It can also form a bio-film as a strategy for protecting itself from abx.  Once treatment stops, these protected bacteria will begin to replicate again.  The cystic form may require a stronger third class of abx which can effectively penetrate at the cellular level.  This class includes Flagyl and Ketek, both of which can have serious side-effects (particularly with regard to the gut). 

Neurological involvement which occurs when the bacteria has passed the blood/brain barrier may require intravenous (IV) treatment in order to achieve the necessary penetration to reach the bacteria.  Shots (Bicillin) can also achieve a high degree of penetration, as can oral Biaxin.

The subject of which abx to use, what form of delivery and what strengths is a VERY complicated one.  Your LLMD will work with you to design the treatment protocol that will work best for you.

Any long-term antibiotic treatment program will negatively effect the gut, which can cause serious side-effects.  Inclusion of an anti-fungal like Diflucan in the treatment protocol will be helpful in this regard, but all lyme patients in treatment should be taking serious amounts of pro-biotics to protect the gut.  In addition, strong antioxidant juices have been found to partially alleviate herxheimer symptoms caused by the die-off of the bacteria, which spews toxins into the bloodstream.  Others find various detox protocols helpful in managing symptoms.  Often, you will need to consult a naturopath, functional medicine specialist or dietitian to get help with supplementation.

Long-term exposures to lyme will require more than Doxycycline to clear them.  And, of course, the whole treatment protocol will be complicated if there is the presence of co-infections - this is pretty common in California - which require their own treatment protocols.  In addition, individual capacity of patients' immune systems, environmental toxic loads and other variables make it necessary to custom tailor the treatment to the patient.

Antibiotics may not eliminate a lyme infection in all cases, but they should be able to whack it back into a state of remission where your own immune system can contain what remains indefinitely.  That's the goal, anyway.  An on-going regimen of supplements and naturopathic treatments will be very useful in this regard, boosting your immune system's capacity.

All of these subjects are covered in detail in various Lyme Times publications, so, again, I urge you all to order your own library of these indispensable magazines from CALDA's website:  www.lymedisease.org

For the record, I underwent 6 months of treatment, followed by a couple of follow-up rounds of treatment for continuing symptoms.  Eventually, these were successfully managed with other approaches (thyroid supplementation and other naturopathic protocols) for 3-and-a-half years.  This past year, I developed leaky gut and a SIBO infection (due to damage to the gut from the abx).  After 6 months on IgG supplements and 75billion CFU/daily pro-biotics, I am feeling good again.

Wishing you all the best in 2011."

Cynthia Sawtell, CALDA advocate and lyme patient

Beach Day

I had 2 good days in a row.  Went to move some stuff to our new house, pick up a dining set in Old Town Temecula that I bought off of Craigslist.  I sold my 8 person dining set for a 4 person sold it for $150, bought the new one for $150.  Perfect trade off.  I could have gotten more for my set, I realized after I had about 15 responses within the first few minutes.  Someone was at my house with a truck within 30 minutes.  My husband told me to put it up for $100, I never listen to him & I always sell things for more.  I should have researched Craigslist for what I was selling.  I could have gotten at least $250 for it.  Anyway, then we went to grab a quick dinner & meant to stop by Home Depot for some paint color samples for the new pad.  But we forgot before we got on the road to the mall.  I used a gift card I got for Christmas at H & M and shopped with hubs & the 14 year old.  They were very helpful men!  I got a few cute things.  Makes me happy.  Can't wait to wear them.

So I wore myself out at the mall & then we went to La Jolla the next day to have lunch and walk around.  It was COLD, so cold that it was miserable.  But I brought extra clothes so I was ok.  But hubby didn't bring a sweatshirt.  OF COURSE!!

So I wore myself out & actually took a nap for about 30-40 minutes on the drive home.  If you know me, a nap is RARE.  I have probably taken 3 in the entire 17 months I have been sick.  Sleeping does not come easy for me.  I wish it did.  Before lyme, I napped all the time.  I had to.  Maybe I've had it longer than I thought.  I had so many unexplainable things going on in my body with no explanation.

My doc ordered an Eco Cardiogram.  I am hesitant to go get it because since it's the new year, comes the deductible, & the 30% out of pocket (until I meet $2500 out of pocket).  There is a place in Ontario that does them for free.  They are a school.  Not sure if that is the kind of place to be getting a check on your heart.  I may consider it though considering the financial situation.

I ordered the Lyme Defense Tea from MistyMeadows.org.  They are an herbal store in Connecticut (I believe).  I only ordered about 15 days worth, but I doubt I'll be able to drink the 32 oz right away anyway.  I want to start slowly.  It's based on the Buhner Protocol that uses antimicrobials instead of antibiotics.  Natural stuff.  I've been on antibiotics for 15 months.  INSANE!  As I sit here typing, I am infusing my medication through my PiCC line.  Such a pain in the butt.  Happy to have 3 days off a week.  I get to bed earlier & don't feel so stressed.  Hubby & I are trying to work me into a schedule.  Benedryl at 9:30, take out IV bag to warm up a bit, 10:00, start IV (takes about 40 minutes if all goes well).  Then I am super tired and can get to bed before midnight or 2 am for that matter.  No more laptop in bed either.  I hate just laying there.  Let's my mind wander & my thoughts run through my head too much.

I've been slacking on my sauna.  I am seriously mad at myself for it.  Need to get back on it.   It is easier when I am feeling better because after I am done I need to hop into the tub right away & it's a long process.  And I often don't have the energy.  Had a hard time walking up the stairs today.  However, hubby did take me & the 3 dogs for a walk around the block.  Not too cold.

I hope everyone is getting better.  This cold has been another set back.  Crazy thing though, I am actually showing symptoms of a cold.  Sneezing & drippy, stuffy nose.  I find that a good thing.  Also, my mom is coming to visit me tomorrow.  YAY!  She is bringing me a tea ball so I can make my Lyme Defense Tea.  YAY!

Getting IV Rocephin on the cheap

Okay, so I need to post for those of you out there also on IV or not doing IV Rocephin because of the cost.  As I've explained before, my insurance stopped paying & also retroactively denied me by 2 months.  YIKES!  Talk about debt.  This disease has put my family so far into debt.  It's heart breaking.  This is probably happening to most people with lyme.  We scrounge, beg, borrow, scrounge from Peter to pay Paul just so we can stay alive.
Anywho - I was using InfuSource in Rohnert Park, CA.  They only charge $30 per dose including all supplies, dressing change kits, stat locks, etc.  Great place, great service.  But that's still $240 a week for me & I just can't afford it.  So here was the plan:


One of my friends started looking around to buy all the supplies separately instead of using an infusion company.  She found the generic Rocephin (Ceftriaxone) from DrugsDepot.com for $5.40 per 2 gram vial.  Great price.  But then another lyme friend pointed me to Walgreen's & we were able to get it there for $2.10 per 2 gram vial!  Amazing.  You need to buy the Walgreen's W card for $20 per year.  DrugsDepot also carries the bags of sodium chloride for the IV drip.  


Walgreen's W card:  $2.10 per 2 gram vial of Ceftriaxone (You need to go into the pharmacy & ask them to order it).  NDC# 0409-7335-03
Cost $21.52 per 10-pack of Rocephin (Hospira brand).  My friend saved us some time by going in & figuring out the easier way to order it (with the number).


**UPDATE:  Walgreen's has raised the price to $6.09 per vial!!!


DrugsDepot.com:   $5.52 per 2 gram vial of Ceftriaxone


DrugsDepot.com:  Approx $2.10 per bag of 100ml sodium chloride, have to buy in bulk, I got that price for a box of 64.  They cover several states.


ShopMedVet.com:  I found them on Ebay & bought some syringes really cheap from them without a script.  My friend ordered IV Admin sets from them for $1 each.  CHEAP!  I had another friend order from them & accidentally got the wrong ones.  Here is the one she ordered: 
B3000-47

ICI Medical, Inc (with horse logo)

PM-1681-HS Rev 00

20 drops/ml 81" (206cm) 20 Drop Admin Set w/Inj Site, Rotating Luer

You can also get syringes & needles cheaply through MedVet.

My friend told me that you can get supplies seperate from InfuServe America too.

I had a lot of friends with leftover supplies mail them to me so I have plenty of Heparin Locks, Saline Flushes, alcohol wipes, syringes, etc.  

If anyone needs help doing the same, please let me know.  Right now I am paying $4.20 per dose!  Once I need more supplies the price will probably up to about $10 per dose, but that's still a third the price! YAY!  Life changing.

Buhner Tea (Lyme Defense Tea)

On another note, I have started to suspect Babesia & since there is NO way I could come up with the money for Babesia meds I am going to start taking my Artemesia & Clove again soon. When more money comes in.  I also just ordered a tea based on the Buhner protocol (book, Healing Lyme).  It's called Lyme Defense tea from mistymeadows.org  $5.95 per ounce.  I ordered two.  Not sure how much that's going to get me.  You use a tablespoon of the tea in 32 oz of water & let it steep overnight.  Then you sip it all the next day.  Contains Cats Claw, Astragalus, Eleuthero, Japanese Knotweed, Nettles, Cinnamon, St. Johnswort, Pau D'Arco, Sweet Annie, White Willow.