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.
Friday, March 18, 2011
Its a GOOOOOOD Day!
PRAISE GOD!
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!
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 sense...it 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 folks...you 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!
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 folks...you 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 coincidence...it was GOD! He has a great plan for me and although I am not sure what it is right now....my 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.
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 coincidence...it was GOD! He has a great plan for me and although I am not sure what it is right now....my 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: www.ldninfo.org 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 conditions....to 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 you....it is just an option to consider.
Finally, I did receive my firstALA
Tomorrow I start on my 2 a day schedule!EGGS FOR BREAKFAST!!!!!
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 conditions....to 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 you....it is just an option to consider.
Finally, I did receive my first
Tomorrow I start on my 2 a day schedule!
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 kids...so 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!
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 kids...so 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.
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.
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