Thursday, August 4, 2011

Still here!

Well, I realize that my last blog entry was April 8th-ish, but to be quite honest these last couple of months have been the worst of my life..and I don't like to complain, so it just wasn't worth writing about.  But now, I have a little good news and thought I would share!

Since March when I headed out to New Mexico to  Dr. Berkson, I have experienced almost every symptom imaginable (it seems).  My lab values have been all over the place and have had many doctors appointments and tests from my team here in Fayetteville.  Some days I felt like I just wanted to crawl under a rock (but was too sore the think much further). 

Apparently, these symptoms were part of my withdrawal from the prednisone and everything else I have been on in the past and my body was just plain angry.  Still, I have been trying to keep to "the plan" of getting off all my traditional meds and just maintaining the Low Dose Naltrexone and the Alpha Lipoic Acid infusions (4 every other week).  While on low dose Naltrexone you can not take ANY pain killers with codeine or narcotics, so even on my worst days...I just had to tough it out.  I really began to think it was never going to work and thought many times about pursuing another biologic agent (drugs that I have been on before that are toxic to your body and given via IV or self injectable).  ALL of them come with black box warnings to include dementia, cancer and other awful "side effects"

My lowest point was over 4th of July when I went to my parents house for the holiday.  My parents couldn't believe what little mobility I had (specifically with stairs and getting up and down out of chairs).  I went out to New Mexico on 40mgs of prednisone a day and over the 4th I had weaned myself down to 4mgs a day...but at a cost (not be able to move).  My dad suggested a round of steroid shots in a couple of larger joints to see if it would help me achieve some temporary (and maybe even more long term) relief.  He injected my left knee and right wrist.  I had a Bakers Cyst in the back of my left knee he aspirated and then injected the knee with kenelog.  I could not close my hands in a fist and the closest I could come was making a "C" with both he injected my right wrist on both sides.  I limped out of the office and rested the rest of the day.

The next day, I was like a new person!  I could walk, do stairs, make a fist with ease!!!!  I was so excited to have somewhat of a life back.  I knew that this was temporary, but I was going to take it after the 4 months I had experienced. 

Well, as expected I started to feel a little sore 10 days later and had one kinda bad day, but then it stopped.  I have hit a plateau and think that the LDN (low dose naltrexone and ALA) are finally doing their thing.  I strive for much better inflammation control, but it is MUCH better than before.  My rheumy's office called today and reported that my white cell count is finally close to normal 11,500ish.  I have been around 18,000-19,000 for 4 months.  I don't feel like i have an infection of any was just inflammation.  I am hoping that this lab value correlates to how I am feeling and will continue to go down along with my inflammation. I am still humbled by the fact that i struggle with such simple tasks that I used to perform with ease, but feel blessed to be able to just function in a reasonable state.  I am trying to take it easy on my body and continue to let the healing process take place. 

I am heading out to New Mexico for my next check up in mid August to see if  Dr. B has any other suggestions to further reduce my inflammation. 

So many of you have asked about me and how I am feeling and I wanted to make sure that i updated those of you who have been interested in my progress.  I praise God for the relief He has given me through this treatment and pray that He will only continue to heal my body.  Your prayers have encouraged me and supported me throughout these last few months.  I cling to the fact that wherever I go from here is His Divine Plan for me and that He gives me the strength to put one foot in front of the other every day(healthy or not).  May His Glory be shown through trials we face and may He use me through mine! the way...I am now on 3mgs of prednisone a day (not to mention 25lbs lighter than March)....WHOO HOO!

Friday, April 8, 2011

Keeping the Faith

First of all I want to thank all of you who are stopping me to ask how I am doing and praying for me.  If I seem "aloof", sometimes it is all I can do to keep it together emotionally.  I am overwhelmed by your sweet prayers and comments.  THANK YOU.

Well, I am still on a downhill slide for now.  It is frustrating for me, but I am convinced that since the prednisone and ALA work in exact opposition that this will be the case until I am off my prednisone (current dose is 12.5mg).  Unfortunately, that will be a while.  My Rheumatologist here in town has given me a schedule that allows me to come of the pred at 2.5mgs per week until I am at 10mgs; then I take it down 1 mg a week until 5mg; and finally 1 mg a MONTH until off.  Not that I am counting, but that is 5 1/2 months!  This is a long time for me to feel rotten, but I am willing to walk through this "valley" of pain to have the rest of my life hopefully pain free!  My sweet friend, who has done this in Hot Springs with AMAZING results assures me that the first 3 month after starting her treatment of ALA/LDN was the WORST!  She was only on 2.5mg of pred so I obviously have a longer road ahead of me in the steroid department.  So I am in this for the long haul, if it means a walker or a wheeler chair before I can give this ALA a chance to work be it!

One decision that I had to make this week was to shut down my business temporarily until I am feeling better.  This was VERY hard for me.  Again, it was accepting limitation, but I honestly just couldn't keep up with it anymore.  I started Dinner Divas as a hobby and creative outlet for myself.  I have a passion for cooking and love helping moms and busy ladies in getting a healthy, home cooked meal on their tables.  Hence, Dinner Divas was born.  I made meals (or kits) that were healthy, and required little prep to get on the table.  I feel that gathering a family around a table is SOOO important in our busy lives and if I could make that task easier for women (or men)....then I was a happy lady.  Don't worry Fayetteville DD girls, I promise to get well soon, so that I can start cooking patient with me!

So the funny thing in all this is my stubbornness is still emerging.  I asked God multiple times for confirmation in the decision to close my business.  I felt in my heart it was the right thing to do, but waited another week to act.  Asked again for confirmation (like i needed it, He had already laid it on my heart....but I guess I need physical manifestation before I really get things in life). So after the second time I asked for confirmation....He gently (or not so gently) answered me taste buds have TOTALLY gone and everything I put in my mouth taste foul.  How can you cook for others, when you can't taste?  Literally, I had to spit out the last meal I tasted for DD.  I called my hubby in and told him that I must have gotten some bad ingredients(as I was digging through the trash reading expiration dates) and was about to throw away 10 pans full of enchiladas...when he tasted them and said they were great!!?!?! That was 2 weeks ago and I still have no taste....hmmmmm....  I am gluten free now, but still made my family eat them that night to make sure there was nothing wrong with them.  Alas, they gobbled them up!

I have asked others if this is a symptom of ALA or LDN or any of the one has had this experience.  It is just the Lord being faithful in answering me and whispering to me, "I am here, I am God, I will not leave nor forsake you...just be still in Me and I will heal you in MY time...oh and by the way...STOP COOKING!"  So I am obeying (or at least trying to).  I am trying to be very still and quiet...again the physical manifestation of my disease process at this point does not allow for much else.  Can you believe how hard headed and stubborn I am?

Finally, I wanted to share a little about my infusions.  I am now doing 4 infusions a week.  My mom came up this week to give me 4 and she is a HUGE blessing in my life.  She tricked me though.  She hooked me up to my IV (which needs about 30 minutes to drip), then refused to disconnect me until the next one.  I have to wait at least a hour and a half between infusions.  It forced me to be on the couch and sit there, while she ran around and did laundry, cooked dinner, tended to my children, etc.  I have shared it is hard for me to ask for or accept help and my sweet mother know this about her child.  She forced me into submission and accepting help...a lesson I am still getting comfortable with.

I am grateful to my "army" of family and friends helping me through this process.  I couldn't do this without my precious husband, my sweet parents and my friends supporting me daily!  LOVE YOU GUYS!

Tuesday, March 29, 2011

Keepin' on keepin' on...

Sorry I haven't been very good about updates lately, but I have returned to life as usual...which is busy!  It is amazing how much more time you have away from home with 2 to 3 extra people helping you with everyday tasks...THANKS to Gaga, Susu and my precious hubby for all the help.  I LOVE YOU!

Well, so back in Fayetteville...I am trying to get my days under control.  I have run into many of you at schools, church, grocery, etc and you have asked how I am doing.  I am doing...not so great, but I still have GREAT expectations.  I knew this was going to be a long road and although I want immediate results they are not coming.  I think that the hardest thing for me is what I like to call the "unknown" factor.  To be quite honest (like I don't do that already), I don't now when this ALA is going to kick in, and it is that "unknown" that makes my days hard.  I long for the day that I can wake up and have a spring in my step instead of a limp.  Today was an especially bad day, and I think it is because I am trying to "get back in the swing" of things here at home and my body is trying to remember what that is like. 

Like I have said before...I KNOW THIS IS GOING TO WORK!  The prednisone is slowing the process (down to 17mgs).  I have had concerns about how my body would react to coming off the prednisone this quickly without the daily infusions, and I think my fears are being realized.  My last infusion was on Sunday and I am not feeling as good today as then.  I was going to wait for 2 weeks to get my next infusion, but we are going to move that up to this weekend.  Dr. Berkson suggested more frequent infusions here at the beginning, so I probably need to follow the Doctor's orders.

So....I have decided to be optimistic and make a list of a few things that I look forward to when I  kick this RA in the rear:
1) wearing my wedding ring again...i just love what it stands for
2)I have promised my kids I am going to buy a bike to ride with them (they are too fast for me on foot)
3) Turning a doorknob without hesitation or anticipation of pain
4) Putting on my own tennis shoes. 
5) losing 20lbs of prednisone weight
6) wearing my watch (I have put 4 links in it and how now given up)
7) sleeping in another position then flat on my back and sleeping through the night
8) walking barefoot (can I get an AMEN Liz?)
9) picking up my sweet baby when he says "carry me, mommy"
10) Giving God the Glory for my healing in His perfect time through this ALA/LDN

My posts will be less frequent, but I will update as needed!  Thanks for continuing to pray and may God reveal His timing in His perfect way and that I can be open to learning every day from this process....

Friday, March 25, 2011


So here I arrive at my 18th infusion in 2 weeks.  I have four more to go and I will take a short break and resume one of two options.  Either....two infusions twice a week; or 1 week of infusions per month.  Dr. Berkson would prefer the 2 infusions a week, but logistically, I don't know if I can swing that living 4 hours away....sooo we are going to see how my first week home in Fayetteville goes and gage whether or not I can make it at least two weeks on this lower prednisone level (still at 20mgs) without daily infusions.  If not, I am going to have LOTS of windshield time.  I am willing to do WHATEVER it takes with this ALA to make me feel better.

So a big box arrived today...MY SUPPLEMENTS.  Dr Berkson is not just about treating a patients' condition with ALA/LDN, but a general overhaul of your health and well being.  I have never been a big fan of supplements because I never know which one to take, if what i am taking is beneficial, if the product is of quality, etc, etc, etc.  Basically...I saw them as me having really expensive urine.  I usually stand in the aisle at the pharmacy spending about an hour reading the labels, looking at the price and usually pick one based on the packaging...I know, not very educated, right?

Dr. Berkson has changed that for me.  Since there is no regulation on the manufacturing of supplements, there is legitimate concern about what you are actually getting.  Dr. B has toured each of the manufacturers facilities that he recommends so I have a greater faith in taking the vitamins and minerals he suggests and appreciate that he has taken the time to overcome this hurdle for me!  I am going to give you the list of supplements he suggested for me....this is not a recommendation for you to take what I am taking, but I thought that if some of you are already taking some on my list you might change the brand knowing that it comes from a reliable source.

The Big One (Multivitamin with Iron)  from Metabolic Maintenance (MM)
Alpha Lipoic Acid (MM or Biotech)
B Complex (MM, Biotech or Carlson)
Selenium, (MM, Carlson)
Fish Oils - Omega 3's (Nordic Naturals)
Rebuild ( calcium from MM)
Vitamin D (Carlson or MM)
Zyflamend ( New Chapter)
Curcumin ( Biotech)

Hope that helps some of you who stand in those grocery store/pharmacy aisles and stress over what to choose.  I now am reminded that price does not reflect quality, packaging although pretty is pretty for a reason (for people like me) and ingredients are important if you don't want subscribe to expensive pee!

I am feeling about the same today as I did before I left for New Mexico.  This is encouraging to me because I am still coming off my prednisone and not feeling any worse.  I am frustrated by the fact that I have to come of the pred SOOOO slowly and am trying to figure out how fast I can actually taper.  I can tell it is inhibiting my progress on my new treatment.  I am trying to be patient, but can't wait to be the vibrant and active wife, mother, daughter that I once was...

Love you guys!

Wednesday, March 23, 2011


We finally got the Alpha Lipoic Acid yesterday (Tues).  I received two infusions yesterday and one this morning..we are back on track.  9 infusions to go...prednisone down to 20mg.  My kids have LOTS of questions about the "hole" in mommy's hand, the "water" and how fast it is dripping...they touch EVERYTHING which drives Susu (my mom) crazy because it is contaminating her sterile field.  They are so sweet to gently hold my fingers and kiss the IV tubing....again...driving susu batty.  Oh, and Taylor (2 year old) announced this morning that he "needed that needle in his arm... 'i sick too'"  We think he has a raisin stuck up his nose, so we need to tend to that first, then we will see about a needle in his arm!

On a different note, I would like to thank all of you for supporting me through prayer.  I cannot tell you how encouraging it is to me during this time to know that the power of prayer is at work on my behalf.  We know He will hear and answer our prayers (Psalm 86:7).

If you know me at all, the "limitations" my disease process has put on me is extremely humbling.  I am one who does not like to seek help and certainly don't like to ask for it.  My husband caught me tying my shoes with my teeth not too long ago and now makes sure they are tied every morning before he parents have recently taken over that role in his absence while on a business trip.  How humbling is that?  They thought they had that skilled covered when I was 5, right?  Gripping is an issue for me.  I use my hands pretty darn well, heck, I own a food business (where I am the only employee) which I consider my "therapy" because it feels good to move my hangs around to limber them up, but have lost strength in my grip.  I love it though and look forward to cooking in the future...pain free!

Another example...sitting in a dad and I saw a movie while in New Mexico and when it was over we both moaned as we ascended from our seats.  He said, "Don't you get so stiff sitting in movies?"  I replied..."Yes I do!  Uh, Dad, I don't mean you any disrespect, but you are also 35 years older than me."  Again...humbling to feel 70!  Learning to ask and accepting help is a skill I am working on.

I have never been angry at God for my RA, but I have asked the question....Why me?  I don't have the answer to that question yet, but I am learning more and more everyday during this period. We are given "trials" in our lives to teach us in areas we fall short and to allow us to grow closer to our Creator.  The opportunities He uses vary, but they nonetheless get our attention.

First, I am a bit of a "controller".  I like to think that I have it all figured out and forget to ask God what He thinks of my wonderful plans.  I don't think that God wants me to live in pain, however I think He is using my disease process as a wake up call  to remind me of HIS plan for me.  (I must be REALLY stubborn for Him to bring me to this place, I guess I better sit up and take notice).  I need to listen and obey to His plan for me.

Second, I do believe He is using me during this trial to encourage others.  My desire is to bring Him glory and point to Him in all that I do.  He has given me a positive attitude and a personality that is "upbeat", so I tend to wear a smile throughout just about anything, including pain.  I don't mean to pat myself on the back when I write that because I want to give God the credit. So many people have approached me in the past couple of months to ask me if everything is ok.  I have tried to not bring attention to my RA so many didn't know I struggled with it, but nothing like 40mg of prednisone, 20 lbs of weight gain and a glorious moon shaped face to bring out those gentle questions...he he he.   However, people have told me during these last couple of months that they are encouraged by my attitude regarding my health and it has helped them with health situations they are faced is my opportunity to point to HIM.  He is the only reason I could have been so positive.

Off the record...I have been a total basket case these last two weeks, and I am so glad He has taken me out of the paths of those needing encouragement (I think He has, but He is so awesome and knows no limits so I guess He could be using me even now in my lowest moments).  I cry about every 10 minutes, which is SOOOO not me, I am usually rock solid when it come to emotion...which makes me laugh and confused at the same time.   I have new neighbors in my subdivision and I have passed their house about a dozen times before I left for New Mexico intending to stop and introduce myself, but every time I drove by....i was crying...didn't want them to think that they moved in next to the crazy, hysterical lady down the street. When I was home that one night before coming to Hot Springs, I ran to my other neighbor, who knows my situation, threw money at her and asked her to go buy them a gift certificate or something from her aloof neighbors.    I am blaming it on the prednisone....I blame EVERYTHING on the prednisone these days!

So I have finally come to the realization that my RA is in fact a blessing.  I am blessed because I can encourage others, I am blessed with a God who will not leave nor forsake me, I am blessed with the greatest family support system, and blessed with friends who care enough to pray for my healing.

Laura Story has a new song out that has great meaning during this time in my life.  I have included the lyrics below if you are not familiar with the song.  The blessings of my RA have definitely come as raindrops and the tears are ubiquitous as well as sleepless nights....all mercies in disguise as they lead me closer to the arms of my Father in Heaven!  AMEN!

We pray for blessings, We pray for peace
Comfort for family, Protection while we sleep
We pray for healing, For prosperity
We pray for your mighty hand to ease all suffering

And all the while, You hear each spoken need
Yet love us way too much to give us lesser things

Cause what if your blessings come thru raindrops
What if your healing comes thru tears
What if a thousand sleepless nights are what it takes to know You’re near
What if trials of this life are Your mercies in disguise?

We pray for wisdom, Your voice to hear
And we cry in anger when we cannot feel you near
And we doubt your goodness, We doubt your love
As if every promise from your Word is not enough

And all the while, You hear each desperate plea
And long that we’d have faith to believe

Cause what if your blessings come thru raindrops
What if your healing comes tears
What if a thousand sleepless nights are what it takes to know You’re near
What if trials of this life are Your mercies in disguise?

When friends betray us
When darkness seems to win, we know
That pain reminds this hearts,
That this is not, this is not our home…..

Cause what if your blessings come thru raindrops
What if your healing comes tears
What if a thousand sleepless nights are what it takes to know You’re near

What if my greatest disappointments,
or the aching of this life,
Is the revealing of a greater thirst this world can’t satisfy.
What if trials of this life,
The rain, the storms, the hardest nights
Are your mercies in disguise?

Monday, March 21, 2011

Ready, Set....uh oh!

Well, here I am in my super new swanky infusion site.  I have the best infusion nurse in the world who treats me as her own (bc she is my CRNA mom) a board certified surgeon on site to tend to my emergency needs (which I haven't had any), a comfy couch to relax on while I watch my children play Geo Trax and build Lego houses and spaceships....unfortunately....we have no drug!  My dad prescribed and ordered it last Tuesday and it was to be shipped to his office by Friday.  When we arrived in last night my dad ran up to pick up the Alpha Lipoic Acid from his office, but it was not there.  sniff, sniff

We have called the company and they are overnighting some tonight, but sadly I am missing two days of infusions.  That is ok, because I am going to take this opportunity to explain how I was driven to go down this road since some of you have asked....

As I have said before, I was diagnosed at 21(I am 34 now) and immediately started on what was considered the "gold" standard of treatment at that time:  plaquenil, voltaren, alzulfidine, prednisone and methotrexate.  I was diagnosed fairly quickly because these "lupus" type diseases run in my family.  My sister had already been diagnosed with dermatomyositis, and my paternal aunt with polymyositis. With this information, the team at Emory decided it was the best treatment.  I felt better and actually continued on this treatment for many years (except I stopped the voltaren because I think it made me feel a little crazy, however it was hard to tell which of those was doing that...probably the prednisone, but again, who knows).  As we moved, I moved my treatment to "BIG" treatment centers.  The next place I was treated was Duke University.  I mention my treatment centers, just because I believed that the most current treatment and latest breaking disease news would be available to me and I followed their suggestions to a T.

I continued down this road for many years....THEN...I had a baby!  This seemed to change EVERYTHING for me healthwise.  I was always fine during my pregnancies, but it was very hard for me to recover postpartum.  Nursing was something I wanted to provide for my babies, but if I nursed them...I couldn't start any other treatment plan for myself....I could be on prednisone, and prednisone alone.  My next rheumy suggested the new biologics.  Now, I was a drug rep for Merck for years and have a great respect for the pharmaceutical agents we have available.  The science and technology behind them is quite amazing!  I was ON BOARD for the biologic adventure.

The first agents I tried were Enbrel and Humira.  I gave each 6 months to work and neither worked for me. Moved to Remicade.  Remicade was the drug that I say "changed my life'...I never felt better and was a new person....that was the first time I took it.  I took it for 1 year before deciding to have another baby.  After, my second was RA worsened again.  My new rheumy (can you tell I have moved alot) didn't want me to start back on Remicade because of the risk of an allergic reaction.  So I decided on Orencia.  It worked ok, but I eventually had to have my foot operated on to scrape out the inflammation around my ankle and repair torn tendons.  My doc then agreed that maybe Orencia wasn't providing enough control....then came Actemra!  Didn't work....I finally had had it and returned my conversation to sweet, dear Remicade that worked so well.  I was SOOOOO excited,  my first infusion was a breeze and I actually felt a little better, got to my second infusion and BOOM...anaphylaxis!  They had premedicated me to prevent this, they stopped the drip, tried to let me recover...but once they restarted it...they decided it was too dangerous and I couldn't get it.  Not breathing=NOT FUN!  I was heart broken.  Then I arrived at Rituxan....You know the rest.

After reading about ALA/LDN and patient experiences, I figured I had to try it.  You know the definition of insanity, don't you....trying the same thing over and over and expecting different results.  That is what I was doing.  The big Pharma drugs are great, but the only problem is that our bodies are too smart for them.  We block one pathway of inflammation and our diseases get better, but eventually they find another pathway to use.  On top of that, our immune systems are suppressed and we can't fight anything.  The ALA/LDN promotes a healthy immune system that upregulates and actually helps us FIGHT the matter the pathway it chooses.  I may or may not have a response to this treatment but it TOTALLY make sense.  I want to FIGHT this...make my immune system as strong as possible!  No one can say that I haven't given the other route a fair shot! I am!

I don't think that I will see the true power of my ALA/LDN treatment until I am off my immunosuppressants.  The Cellcept and Prednisone are suppressing, while the ALA/LDN is upregulating so they are working against each other right now.  I have stopped the Cellcept, but I can't simply stop my prednisone.  I have to come off it slowly.  I am having the experience in the mornings when I take my prednisone where I actually feel worse after I take it.  When I get up, I am obviously stiff, but about 30min to an hour after I take my prednisone my knuckles throb like they never have before, and I have a general sense of feeling worse.  This does pass, but I think what i am experiencing is the two agents (prednisone/ALA) battling each other. 

Hopefully I can write tomorrow about getting a infusion!

Saturday, March 19, 2011

My Sweet Kids

Well, I have finally made it home to Fayetteville!  My hubby and kids were here to welcome me with lots of hugs and kisses.  :-)

Last night, I was telling the boys good night on the phone and Adam finally asked, "Mama, where are you?".  I think it was the first time he actually realized I was gone!  They had such a good time in Montana, no one knew Mama was gone....he he he   I am pretty sneaky!

Anyway, when we drive up in my Dad's car (who they call Gaga) they got so excited....sadly, not because I was in it.  My kids are literally obsessed with my dad's car.  They LOVE that it has a "movie" in it (our car does too, but they just don't get to watch it very often).  Gaga has VERY different rules and they get to watch movies to their hearts content when they are in his car.  So I think that they think that I opted out of skiing in Montana to ride around with Gaga and watch movies for the week.  They kept asking me what movies I watched.  Kinda cute. 

Well, I didn't get any infusions today, but will go to Hot Springs tomorrow to start my last 6 days of infusions.  That means I have 12 infusions left for the loading period.  I am feeling not as good today as yesterday, but expect to have good and bad days here at the beginning.  To have a few good days littered in would be an improvement from where I have been.  Then, maybe there will be a few more good days, a few more and a few more....

The response time varies from patient to patient.  From the patients I spoke to with RA it seems to be anywhere from the first day to 3 months.  One lady I met had a response the very FIRST infusion.  The other patient from Hot Springs had a response at 3 months or so.  It seems to be dependent on how much crap (excuse me...toxins) you have in your body when you arrive.  The lady who had a response the first infusion had stopped EVERYTHING 3 years before ALA and had decided to just live in pain.  Her hands were frozen closed and she was shuffling around and looking into a wheelchair.  Since she had no toxins in her system, she seemed to response very quickly.   She now walks fine (and dances), and has full use of BOTH of her hands.  She receives treatment every 2 months or so.  She is 73 and looks better than ME!

The other patient from HS, had just completed chemotherapy from a lymphoma she received from taking Enbrel...ironically the treatment for her lymphoma was Rituxan (the drug that I was to be on before I started ALA).  After she received Rituxan for her lymphoma...she headed to Dr. Berkson and ALA/LDN.  It took 3-4 months for her to see a response due to the Rituxan and Enbrel working their way out!  She is now a new woman with very few limitations physically.  She has amazing energy and no inflammation to speak of. 

These responses are exciting and encouraging to me!

Friday, March 18, 2011

Steroid Shots vs ALA

Some of you have concerns about my receiving the steroid shots...
I want to make it clear that I understand that steroid injections are not a good idea as a route to get your disease process under control. I have done steriod injections in the past when my inflammation has been controlled but one specific area was giving me problems.

The injection I received yesterday was really NOT a steroid injection at all. I asked the nurses this morning and the kenalog was drawn up as 1/4 cc and the rest of the solution was lidocaine (3 to 4 ccs). Dr. Berkson has given these trigger points in the past as a solution of lidocaine and water. The purpose is to separate the tissue fibers and this creates some sort of "trigger" reaction...that i don't completely understand.

I actually have refused traditional steroid injections in the past because it is important to me to see how my medicine is working. I need to know how the ALA and the LDN can act alone. I believe that if the response I feel today is sustained, it is the ALA and the LDN.  I don't think the injection I received yesterday is going to provide enough for the systemic response I am looking for, but I was able to sleep better last night...which was the goal.



I had an unexpected morning this morning...I FEEL BETTER!  I have always had faith in this treatment, but after my day yesterday (a REALLY bad day) I couldn't believe when I woke up this morning and felt as good as I do!  It has been months that I haven't gotten out of bed and either shuffled to the bathroom or limped.  Today, my knees have very little pain and my hands feel better, still very sore and stiff, but a definite improvement. 

I realize it is just one day and I am excited to see what the days ahead bring, but there is a dramatic difference in my physical state TODAY.  I am more impressed that I have come 15mgs off my prednisone in 2 weeks and am STILL having such a response. 

We have a  long 2 days in the car, so that will probably make me stiff, but I am feeling pretty darn good...I have a ways to go, but I will take this day with open arms and give it a big fat squeeze!

Thursday, March 17, 2011

Japan is calling....

Well, there has been a flurry of activity in Dr. Berkson's office over the last couple of days.  Japan is calling asking about ALA treatment for radiation exposure.  Apparently, it was used with success during Chernobyl...which makes is effective in removing free radicals. 

As for me...I have completed 8 rounds of ALA therapy so far and I have two more treatments tomorrow before I go back to Arkansas.....YES...I am going home.  I still have 10 treatments to receive there via my new infusion center (to be set up at my parent's house)!  I am in the unique situation where my dad can act as the prescribing physician and my mom can  be the infusion nurse....the benefits of having a dr. dad and a nurse anesthetist as a mom.  The patients out here would kill for my set up....and I am going to take it!  Some patients have been out here for 3 weeks or more, because they can't get anyone to sign on to administer the drug.  This is a GREAT blessing for me!  I miss my husband and my kids and want to see them, so to be able to go home, receive the therapy AND see my family is ideal.

As for my progress...I am not feeling any better yet.  I am actually feeling a little worse and ALOT tired.  This apparently is very normal.  Since I came out here on SO many agents that are considered toxic, it is going to take a while to work them out of my system and to see the other benefits of the ALA.  The LDN (low dose naltrexone) takes about 2-4 weeks to see results.  I am staying positive, because so many people have had success with this treatment.  Specifically, I have spent time with patients with the following conditions: Hep C, Parkinson's, cirrhosis, lupus, and liver cancer.  Every one of them is having success on ALA therapy.  I don't know what the long term outlook is for them, but they are very happy with the results so far.  Some of them have been coming for weeks and others for years...7 or more years.  The Hep c patients have seen their liver regenerate.  It is quite amazing.

My dad is still trying to work out all the other conditions being treated, but after studying ALA and how it works...he thinks it is the perfect treatment for inflammatory conditions, such as mine.

Ok all you medical have asked and I will give you my specifics that I will update as I get more blood work.  On monday before starting treatment here are my "important" markers:

ANA - positive
Rheumatoid Factor - 33 IU/ML    Normal is under 30
C-Reactive Protein - 3.2MG/DL  Normal/low under  0.8
Vitamin D level - 20 NG/ML    Normal range is 30-100

My blood work basically shows that I have active disease, but it took 7 years of disease before my blood work was abnormal.  My MRI/CT's are more impressive when looking at inflammation. 

Dr. Berkson suggested "trigger point" injections for my hands today.  These are lidocaine/kenalog injections that he targets in specific problem areas. The first option was to inject my finger joints. However, after looking at the inflammation in my neck, he decided to do the injections there with the hopes I might have some "trickle down" to my hands.  My neck already feels better....I expected this....i have had LOTS of steroid injections over the years.

I think that I have been stuck with needles 15 times so far this week....and to think I use to have a phobia of needles!  Literally, I would have a Vagal response and have to lie down to get blood drawn (and that was when I was in college!)  Over 14 years, practice makes perfect and I am now a human pincushion.  Not to mention that my pain scale is a little skewed....

I will continue to update as I progress along...and hopefully I will be writing soon of less pain, less inflammation and LESS PREDNISONE USE (which by the way I am down to 25mg....gonna hang out here for a while...think I am being a little to aggressive coming off it)  14 years of prednisone, I guess I need to let my Adrenal glands catch up/wake up....

Well, I guess I am going to try to go sleep on my "new" neck!  Nite Nite!

Tuesday, March 15, 2011

Full Dose

This morning, I started on the 300mgs of  ALA and finally this afternoon I received the full dose of the 600mgs of Alpha Lipoic Acid.  I haven't had any reactions and the only side effect is fatigue.  I can't figure out if that is actually from the drug or from the disease process, because I was at an all time energy low when I arrived here, so it is hard to distinguish.

So far my inflammation remains the same, however I am coming off my prednisone.  I am now down to 30mgs a day.  My dad is encouraging me in this just because I have this time out here in NM without kids to manage and to help physically.  I only have to manage myself and my days here are pretty undemanding, from a physical standpoint.  I am grateful to be out here with my Dad. 

I believe it is God' will for me to be here.  I have pushed the idea of coming here off for many months due to "logistics".  When thinking about coming out here, it seemed impossible to leave my family for 2 weeks.  Who would take care of my kids? What would I do with my business? How would I get the treatments when I got home? .... and the list of questions went on.  When Rituxan was suggested to me as a treatment I initially signed up immediately, without hesitation, because I was so desperate to feel better.  When my family finally sat me down and talked to me about my options and coming out here...all the pieces just fell into place.  It was NOT was GOD!  He has a great  plan for me and although I am not sure what it is right prayer is that I can willingly submit to whatever that plan looks like.  Healing or no healing, His Plan is perfect and during these "valleys"  I don't want to forget how many blessings I have in my life. 

Thank you for supporting me in this by your sweet comments, encouragement and prayers. 

Monday, March 14, 2011

First Infusion!

Today was a big day for me!  I met with the Dr. Berkson.  He had legitimate concerns about all the medicine I am currently taking...specifically all the immunosuppressants.  He would like to see me off the prednisone and the Cellcept as soon as possible...if possible.  He would prefer me to be on the Alpha Lipoic Acid infusion with a low dose naltrexone along with various supplements he suggested.  Naltrexone is an opiod receptor antagonist.   The 50mg dose was FDA approved in 1984 for patients addicted to heroin and opium addicts.  When given in smaller doses...such as 3-5mg it works to up regulate the immune system with no toxicity.  I don't understand all the science behind it, but those of you who are interested in science, microbiology and chemistry...feel free to check out this site regarding LDN:  This is the reason my sweet dad is with me...they (my dad and Dr. Berkson). started down a road of molecular biology and I just kinda glazed over not understanding most of it, but was encouraged by the specific patient success and studies.

He gave us LOTS of scientific evidence of Alpha Lipoic Acid in conjunction with a low dose naltrexone and its positive effects on various diseases and name a few: diabetes, liver cancer, Hep C patients, pancreatic cancer and obviously autoimmune diseases like RA...and any disease in the Lupus family!  I don't want to suggest it is a panacea by any means, because I am sure there are failures....but I think that it works for some....and truly convinced that it works for my disease state specifically. 

I know that was alot of "science", but I want to share this with those who may be struggling in their next move medically.  I am not suggesting that this treatment is for is just an option to consider. 

Finally, I did receive my first ALA infusion this afternoon.  I started out today on a low dose to make sure I reacted ok.  The only reaction really associated with the infusion is it can crash your blood sugar.  My dad and I had a big lunch and I did great...although the poor lady next to me only ate a piece of cheese and almost passed out!  Note to good protein before every infusion! 

Tomorrow I start on my 2 a day schedule!  EGGS FOR BREAKFAST!!!!!

Sunday, March 13, 2011

Funny Story

We are finally in Las Cruces, settling into our hotel/home.  I am looking forward to tomorrow and don't know what it might bring....but expecting great things over the next couple of weeks/months!

Wanted to share this funny story:

My dad and I stayed in Santa Fe last night for fun.  We vacationed there as a family on our way to Colorado when we were my daddy wanted to see the old stompin' grounds.  We got up this morning, found a cute cafe, and then proceeded to the Old Town Plaza.  Now, when I was a kid, my dad would take us girls down to the square to buy the Indian's jewelry.  This is where I was suppose to learn the fine art of "haggling" the price!  He would watch us with our allowance try to bring down the price of $5 bracelets. I was prepared to "wow" him today with my skill after 25 years...

I am disheartened by the presence of the sweet Indians in the Plaza of Santa Fe.  A few things I saw out of place for this "historical" setting....first, one of them was drinking Starbucks; second, my dad noticed two of them were asleep; and finally...they ALL take Visa/MC/Discover!  As far as "haggling"....there was none...set prices and NONE of them were willing to budge....and we thought this was a bad economy....

Nothing to really report about medical stuff today, but thought these stories were funny....

Ledzinski Boy update:  Adam and Taylor are BOTH up and skiing!  Adam is riding the ski lifts and skied a Blue run today!  Taylor is still on the bunny slope, but he is only 2!  We are proud of him for making it that far.  Adam will not even go in to eat lunch....he says, no..I don't want to eat, I'm skiing!

Friday, March 11, 2011

First Step

Well...I am officially getting ready to leave.  Today has been CRAZY running around preparing.  I spent the morning snuggling my kiddos and tearfully put them on the plane with Daddy.  The rest of the day has been trying to get myself ready to leave.  People have asked me what I am going to do with all this time?!?!?  I really haven't had time to process it until now.  As I was walking around Target, it dawned on me that I am going to actually have time to read a book (or 2 or 4)! So...I bought a book.

I love being a mom, and that is why I stay home with my kids, but you do have very little time for yourself.  I don't mind, however thinking about a whole 2 weeks without tending to anyone else but myself is a little bit daunting. 

My dad is on his way to my house right now.  He will arrive here tonight and we will head out in the morning. When we decided to go to New Mexico for this treatment, we all (whole extended family) had tickets to Montana for Spring skiing.  I assumed that my dad and I would just change our destination to NM...I should have known...MY dad LOVES to drive.  This is my first long roadtrip in a REALLY long time.  My little boys and big guy will be skiing in Montana with my mom, sisters and their cousins, so i will miss them more than they will miss me! 

Funny little story for those of you who know about my kids and just about travelling with kids in general......Justin called from the Denver airport and had them all set up in a corner somewhere with toys, snacks, lovies, etc.  We had to get off the phone once for Taylor "spitting" at Daddy...our second try at talking, Taylor wanted to play with one of the computers.  Justin offered him one of the two....the blue one or the green one....Taylor wanted the orange one...that was the last I heard from them....MELTDOWN!

My appointment is on Monday morning at 11am.  From what I understand, I will start infusions as soon as possible.  The first week of infusions some patients have the experience of first getting worse before getting better.  I am not looking forward to that, but will do just about anything to feel better at this point, so if it takes getting worse...then so be it!  My prayer is to be able to come off my prednisone as quickly as possible.  I have been on high doses for quite some time and it puts me at a significant risk for fighting simple infections. 

I serve the Great Physican that has no limits or boundaries....The Lord is in control and His Plan is perfect for me.

Saturday, March 5, 2011

New Adventure I have never blogged before, but since I am about to embark on this journey to New Mexico to seek "non traditional" medical intervention and many of my sweet friends have asked me to keep them updated I decided that I might blog for the next couple weeks.  I have absolutely NO time to blog at home in Fayetteville, but while i am getting my treatment in NM I will have nothing but time!

My only intention in writing this blog is to keep my sweet friends and family updated on my progress and for others to learn from my experience.  I am hoping that I have amazing results and that if others are struggling with chronic conditions that this might be an answer for them as well.  Feel free to pass my blog along to anyone that might benefit.

A little background on my health history....I have battle Rheumatoid Arthritis for 14 years and over the past 9 months my RA has gotten progressively worse to the point of not functioning very well on a daily basis while going up on prednisone (steroids) at an alarming rate.  I have always pursued the "big pharma" route and tried almost every treatment available  (Enbrel, Humira, Orencia, Remicade, Actemra, methotrexate, Arava...and the list goes on).  The last treatment (Rituxan) my doctor recommended to me comes with a risk of irreversible dementia that eventually results in death.  Now, I have never been put off by side effects, but this one was different due to the fact that it has NO treatment once you are diagnosed.  The risk is only 3 in 100,000, so I have a better chance of getting struck by lighting, but if you are one of those really STINKS for you.  SOOOOO.....i have started on a different journey for now.

I am heading out to New Mexico on March 12th to try infusions of Alpha Lipoic Acid.  This is an antioxidant that is found in organ meats,various green veggies, and yeast.  To achieve the most powerful effects of this antioxidant, it must be infused via IV because we can't metabolize enough through eating alone (not to mention animal organ meats?  Kidney, anyone? YUMMY!).  Great link to look at if interested in how ALA works in our bodies and other diseases it has been shown effective at managing:

So there is a physician in New Mexico that is infusing patients with ALA with dramatic results.  My dad, a traditional doctor (surgeon) who has never embraced the more holistic treatments, is travelling with me.  He is currently ordering ALA for another patient with RA who sees this same physician.  She has been doing the ALA treatment for a year with dramatic results.  She is off ALL her other medication.  My dad is convinced that this will work and wants to support me in this journey as well as learn!  SO...we are heading out on this Daddy/Daughter trip together. 

As I prepare to leave, here is the tally of meds I am on:

40 mg of prednisone a day
2000 mg of Cellcept
Hydrocodone (AM dose) keep pred as low as possible
7.5 mg Lisinopril

I will try to blog daily as I receive 2 infusions every day for 2 weeks.  I would also ask that you pray for me and my family.  It is going to be hard to be away from my sweet husband and two sweet sons, but the purpose of this trip is my getting better so I can function better as a wife and mother.  I pray for a speedy recovery, but I also pray that God's Will be done.  For 14 years I have prayed for healing, but sometimes we are called to NOT be healed.  If this is the Lord's plan for me then I ask for peace.  Most importantly, I pray that His Glory is shown.....