I went to the Dr's last week. I asked him about getting B12 injections. He said I could get them once a month. I told him that wouldn't be enough according to the research I've done on CFS. Most experts agree that 2 to 3 shots a week at the least would be needed to notice a difference. Well, after much debate and a few tears, he finally agreed to give me one shot a week for the next four weeks. I was ok with that for now. I know I need a new doctor. Although my Dr is a good internist he does not keep up to date on the latest research for treatment of CFS. I've searched the databases available to find a Dr who is knowledgeable about my illness but there aren't many. Most of them are rheumatologists and they treat the symptoms of Fibromyalgia and usually don't know that much about CFS. Many people think these are the same illnesses. Although similar they are not one in the same. People with CFS deal more with lack of energy, total exhaustion, whereas, people with FMS deal with all over body pain. I do get the muscle pain especially in the winter but the fatigue, sometimes severe exhaustion is what hinders me the most.
I had my B12 shot Tuesday this week. When I got home I noticed on the papers they had given me the cyanocobalamin form of b12 instead of the hydroxocobalamin form. From everything I've read, the hydroxocobalamin from works better for this illness. At my appointment the doctor told me that he would be giving me the hydroxo form. So, I called the office to ask them about this but still have not received any answers yet. I might have to stop by there Monday. Fortunately, the office is only a mile away.
I also asked my doctor about low dose naltrexone (LDN). Naltrexone in high dosages is used to help drug addicts and alcoholics get through withdrawal. For some reason that is not understood it has proven to be helpful in patients with FMS and CFS. The dose that is recommended is between 3 to 4.5mgs a day. My Dr had never heard of it for treating my illness so he did not want to prescribe it for me. He did agree to have his assistant review any literature I had about the medicine and it's effects on my illness. I sent him an email with a few links. We'll see if he decides to try it or not. See below for some links regarding LDN and CFS and FMS.
The other thing I have been working on in hopes of feeling better is my diet. I have been cutting down on sugar, gluten, and diary. I haven't totally eliminated them but I'm doing my best to really minimize all three. I bought gluten free pasta and gluten free bread. I also have been buying more and more organic foods. It's a little more expensive but worth it and if your lucky you might find these items at a store near you that has cheaper prices. Near me I have an Aldi and a Price Right. I've been finding more and more organic and gluten free products at these stores and definitely more reasonably priced. If you do a search you might find you have one of these stores near you. I bought organic sugar at Aldi for $2.79. It's almost $6.00 at Whole Foods Market! The gluten free pasta was $1.79 here and at any other store it was at least $4.50 or more. I'm all about getting a bargain! :) This is all new to me and it feels like it's a slow process. I am trying not to be too hard on myself because this isn't easy. Progress not perfection.
I will post more treatments I've been researching and links for your reference next time.
Here are the links for LDN:
http://phoenixrising.me/treating-cfs-chronic-fatigue-syndrome-me/immune/antivirals-and-immunemodulators/ldn-low-dose-naltrexone
http://www.fiikus.net/?ldn
http://www.ncbi.nlm.nih.gov/pubmed/23359310
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