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

Well, it's been over four years and I had forgotten I even started this blog! I just read my introduction and nothing has changed that much since my original post. I still have my good and bad days. This summer I had a lot of good days. It was wonderful. I wish I had blogged about it. I went to the beach several times. My boyfriend and I stayed a mile from the beach for a week. That was heaven! Then, at the beginning of October I started feeling really tired. I got a cold the week after and I've been sick for about six weeks. I have had a few days that I was able to go to the store. I'd say on a good day I could shower and go to the dollar store. Today was probably the best day I've had in awhile. I showered, got dressed, went to Burger King to get a shake. I brought the shake to my boyfriend's grandson Jaxson. Only stayed for ten minutes or so. Then I went to the water nearby where there are boats. It's November and it's sixty degrees out! Then I went to the park near there and took some pictures. I am seriously thinking about getting more into photography. So, then I went to see my friend Liz and her 2 month old baby, Josiah. He is so adorable. I stayed for about an hour. I went to the market after to get some things for dinner. Now I'm tired but so grateful to have had such a good day! I'm hoping to get some followers on here. I have a lot of friends on facebook but naturally many of them can't understand what people with these types of illnesses go through so I thought maybe I could write here and hopefully help people understand this illness. 

I have been reading alot lately about various treatments that people have tried and have found helpful. I am now taking sub-lingual Vit B12, as Cyanocobalmin,1500 mcgs a day. I also take a packet of Emergen C every day. It had 1,000 mg of Vitamin C as well as smaller amounts of vitamin Bs. I have a drs appointment next week and I want to see if I can get Vitamin B12 shots once or twice a week. There are different types of B12. See below:

Hydroxocobalamin: Is not a form normally found in the human body, primarily produced by bacteria but can be converted in the body to useable, coenzyme forms of B12, methylcobalamin and adenysylcobalamin, the only forms able to cross the blood brain barrier. Interestingly, Hydroxocobalamin attaches itself to cyanide and is therefore used for smoke inhalation victims If glutathione is low the conversion from hydroxocobalamin will be blocked and methylcobalamin would be the preferred form of B12. Link to research.

Cyanocobalamin: Is the cheapest and most stable form of B12 and has a long shelf life but needs to have the cyanide molecule taken off, so has an extra conversion before being converted to methyl or adenyslcobalamin. With a certain eye condition, (Lebers hereditary optic neuropathy) cyanocobalamin should not be used.

Methylcobalamin: This is the most natural form of B12 and needs no converting .It is already in its “ready to use” form and is a more expensive form. Methylcobalamin is the active coenzyme form necessary for any biological activity. It also is the least stable with the shortest shelf life, converting back to hydroxycobalamin if not stored correctly. Methylcobalamin is sometimes referred to as “active B12” as it is in a form ready to be used by the cells.

 Adenosylcobalamin: This is also an “active “ B12 form, making this coenzyme immediately available for use by the body. It is required for an enzyme known as MCM (Methylmalonyl Coenzyme A mutase), which resides in the mitochondria and is needed to make succinyl CoA to produce energy in the citric acid cycle. In humans adenyslcobalamin is found mainly in the tissues especially the liver. It is the primary form of B12 found in non-human animals.
 
 Dr. Charles Lapp, an expert in CFS found improved energy levels with B12 supplementation of 2500 – 5000 mcg every 2-3 days. Injections have been shown to be most effective. Although, it is now believed that sub-lingual tablets can be almost as effective.

There are several other treatments that I have been reading about and will post here in the near future.