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!
Your adrenal glands are not going to wake up if you keep receiving Kenalog injections... I never use Kenalog as it causes subcutaneous and skin atrophy... there are better steroids that can be injected. How are you going to know if the ALA and naltrexone have any benefit if you receive concomitant steroids?
ReplyDeleteDaniel Small, M.D. Board Certified Rheumatologist
I want to make it clear that I understand that steriod 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.
ReplyDeleteThe injection I received yesterday was really NOT a steriod 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. 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 creats some sort of "trigger" reaction...that i don't completely understand.
I actually have refused traditional steriod injections in the past because it is important to me to see how my medicine is working. Dr. Small is correct...I need to know how the ALA and the LDN can act alone. I don't think the injection I recieved 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.
Dr. Berkson's trigger point injections to both my knuckles and neck were an absolute miracle for me. I had them in October 2010 and I think it jump started the significant inflammation to go away. I have gone from the 'Tim Conway Shuffle" to feeling practically normal. I began treatment in march 2010. It literally changed my life.
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