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
Friday, November 21, 2014
Wednesday, November 5, 2014
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.
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.
Tuesday, January 26, 2010
Dealing with Chronic Fatigue Syndrome
January 26, 2010
Welcome to my blog! I decided to start this blog so that people with Chronic Fatigue Syndrome and Fibromyalgia, as well as their family and friends, might get a better understanding of what a person with this disease goes through. I'm 45 years old and have lived with CFS for fifteen years. It upsets me to even type that and see that its been that long since my diagnosis. I became ill very suddenly. I came down with the flu and many of the symptoms just kept coming back. In the beginning there was a point where I could barely get out of bed. As time went on I seemed to gain my strength back. Although, I had setbacks I was still able to do many of the things I used to. Unfortunately, I wasn't able to go back to work. I did get married about three years into my illness. I feel my husband played a important role in the amount of recovery I was able to obtain. He helped me to eat healthier and was very supportive. He never doubted how sick I was and he was there for me. Sadly, my marriage ended up in divorce but we are still friendly with one another and I will always be grateful to him. During the time I was married I did small part time jobs here and there when I could find them and raised my son, who was 3 when I got sick. So, needless to say I had plenty to keep me busy and did my best to do what I could. Over the years my illness would be up and down, like a roller coaster ride. My doctor said alot of it had to do with stress. I won't go into details but I was going through many different stresses at the time, one of them being my mom getting lung cancer. I feel despite everything though that I had many good years and feel thankful that at that time I was able to do alot more than what I'm able to do now. I'm very fortunate for that and have many happy memories. After my divorce things went slowly downhill. I didn't see it then but I do now. I'd have to say that I've gotten alot worse over the last 2 or 3 yrs. Why, I don't know for sure. I speculate that it has to do with the loss of my marriage and a few years later the loss of my dad. I think that I haven't fully grieved either one and maybe that's what I need to do to get back on the right track. I really don't know but I do want to figure it out. I've tried many supplements over the years. Some have helped somewhat but it seemed that if something worked that eventually it would stop working. Now I'm at square one and I'm going to start taking one thing at a time for awhile and see if there is any improvement. I know for certain I need to eat healthier. I am doing better but still need to work harder on that.
As far as dealing with this illness and the miriad of emotions that go along with it I think what helps is to really appreciate the little things, and when I say little I mean little. Some days I'm happy if I feel well enough to take a bath or shower, put on my makeup, get dressed and go to the store. Usually, I can only handle the small stores. On occassion I can go to the market and I feel so happy because I feel like a normal person that day. I've learned to be happy with even the simplest of things. Things that most people wouldnt think much about. For example, I found this movie online. I had wanted to see it at the theater but since I am not able to get out that often I didn't get to see it. I decided to look online and see if I could find any good movies to watch. Well, I ended up finding the movie I had originally wanted to see and the quality was excellent. I was ecstatic! LOL Yeah, huh, over a movie. It made my night. The movie wasn't as good as I had anticipated but it was pretty good and had some funny parts. Oh, and when my grand daughter comes to visit it's like Christmas every time. I get so much joy just watching her. I just sit there and look at her in awe and hug and kiss her like crazy. She's probably saying in her head "Geez grandma, enough already." It's just they grow up so fast and I want to treasure every second with her. My son is 18 now and of course I can't hug him, lol. If he gave me a hug I think I'd faint! He used to be so huggy and love to snuggle. Ahh, the good old days. But I have a grand daughter to hug and play with so I feel very lucky for that. Other things that make me happy are simple things like a friend calling just to say hi and see how I'm doing and often times we end up talking for an hour or two, sometimes three! I feel good when a friend calls and I can help them out with something going on in their life. It takes my mind off of myself and I think I have really helped many people in my life, which gives me a sense of purpose. When I feel well enough to go to my friend's house and scrap book or play cards, wow, that's a really good day! And if a friend comes over to visit, again, a really good day! Such little things but they mean so much. Just to be around other people and feel normal. Oh, and when I can go out out, like to a restaurant or go see a band, well, that makes my month. I'd say I get out once or twice a month at this point. Sometimes I get lucky and it's a little more often. Depends on so many things. The weather, my allergies, hormones(lol), if i have a cold, etc.
Often times I ask , why me? Why did I have to get this illness. Some people believe everything happens for a reason. I don't clearly understand why I got a chronic illness but I can say that it has made me a different person than I would have been otherwise. I think I'm a better person for it. I don't think I would have seen the blessings I have if I didn't get sick. I wouldn't have learned how to appreciate so many things that so many people take for granted. I also think I have a more spiritual side to me now. Take my word for it, when your sick almost every day you have to believe there is something more after this and that while you are here you have to do the best you can with what you have and make your life worth living. Now, I'm not going to say thats always easy. There have been many times that I've gotten very depressed over being sick. There were days at a time that I would lie in bed in so much pain I would cry. I was so weak that it took all I had to take a bath and that was my accomplishment for that day. When I have those days I isolate. I don't call anyone. I don't want to see anyone except for the very few people that I allow to see me this way. That would be my son and my best friend, Tony. He's been there for me at times where I didn't think I wanted to be here anymore. He's sat next to me in bed watching TV, and movies, playing cards. How many people would do that for you? Not many. And I don't want people to see me when I'm that sick. I don't want them feeling bad for me. I want them to see me when I feel good and can enjoy being with them. So, when people do see me I usually look good, not like I have an illness. I think this confuses alot of people. They wonder, how can she look so good on the outside and feel so horrible on the inside. Well, I always try to look my best when I go anywhere. It's something I think I learned from my mom. She would always put on her makeup even if she was just going to the store for a few things. My illness is not easy for alot of people to understand. Heck, I don't understand it, and I have it! I think the thing that hurts the most is when the people in your life don't understand and sometimes unknowingly make you feel that it isn't all that serious. There are several articles that state that many people with this illness can not function as well as people with such serious illnesses as cancer and AIDs. This is because they have treatments to help people to fight these diseases and sometimes cure them. Even if they can't be cured they can lead a more normal life than many patients with Chronic Fatigue Syndrome and Fibromyalgia. I am going to find some of these articles and post them at a later date.
They don't know what causes it and they don't have any cures and very few effective treatments. Basically, they treat the symptoms as well as they can. However, the overwhelming fatigue is one of the most difficult to treat and is what gets me down the most. Ironically, I can't fall asleep until 3 in the morning. Why is this? Well, along with this illness comes sleep disturbance. The brain has night and day confused. So, often times I have more energy at 1 am then during the day. What is there to do at 1am? All I can say is Thank God for the internet! LOL It really is a life saver for those who can't get out alot. It's a way of socializing and keeping yourself entertained. So this is basically my life at this time. I still have hope that they will find a treatment for CFS that will allow me to lead a more functional life. There are some new discoveries that have just come out in the press and were even on the Dr Oz show regarding a virus they feel could very well be at the root of this illness. If it turns out that this is true there are some anti viral medications already in use that may prove promising. So, I'm keeping my fingers crossed and for now taking it one day at a time because thats all I can do.
I hope I have helped some people to better understand this illness and know what someone they know and love is going through. Sometimes you might feel helpless. That there's nothing you can do to help. However, once again, it's the little things that really do make a difference. A phone call, a visit, asking if they need anything. Also, if there are times when the person can go out but you aren't sure if you should ask them because you don't want them to feel bad if they can't. Ask them! Just knowing that someone cares enough and enjoys your company enough that they would thnk of you and want you there makes you feel so good and really lifts your spirits. Even if we can't go we know that you thought of us and that is what really matters :)
As far as dealing with this illness and the miriad of emotions that go along with it I think what helps is to really appreciate the little things, and when I say little I mean little. Some days I'm happy if I feel well enough to take a bath or shower, put on my makeup, get dressed and go to the store. Usually, I can only handle the small stores. On occassion I can go to the market and I feel so happy because I feel like a normal person that day. I've learned to be happy with even the simplest of things. Things that most people wouldnt think much about. For example, I found this movie online. I had wanted to see it at the theater but since I am not able to get out that often I didn't get to see it. I decided to look online and see if I could find any good movies to watch. Well, I ended up finding the movie I had originally wanted to see and the quality was excellent. I was ecstatic! LOL Yeah, huh, over a movie. It made my night. The movie wasn't as good as I had anticipated but it was pretty good and had some funny parts. Oh, and when my grand daughter comes to visit it's like Christmas every time. I get so much joy just watching her. I just sit there and look at her in awe and hug and kiss her like crazy. She's probably saying in her head "Geez grandma, enough already." It's just they grow up so fast and I want to treasure every second with her. My son is 18 now and of course I can't hug him, lol. If he gave me a hug I think I'd faint! He used to be so huggy and love to snuggle. Ahh, the good old days. But I have a grand daughter to hug and play with so I feel very lucky for that. Other things that make me happy are simple things like a friend calling just to say hi and see how I'm doing and often times we end up talking for an hour or two, sometimes three! I feel good when a friend calls and I can help them out with something going on in their life. It takes my mind off of myself and I think I have really helped many people in my life, which gives me a sense of purpose. When I feel well enough to go to my friend's house and scrap book or play cards, wow, that's a really good day! And if a friend comes over to visit, again, a really good day! Such little things but they mean so much. Just to be around other people and feel normal. Oh, and when I can go out out, like to a restaurant or go see a band, well, that makes my month. I'd say I get out once or twice a month at this point. Sometimes I get lucky and it's a little more often. Depends on so many things. The weather, my allergies, hormones(lol), if i have a cold, etc.
Often times I ask , why me? Why did I have to get this illness. Some people believe everything happens for a reason. I don't clearly understand why I got a chronic illness but I can say that it has made me a different person than I would have been otherwise. I think I'm a better person for it. I don't think I would have seen the blessings I have if I didn't get sick. I wouldn't have learned how to appreciate so many things that so many people take for granted. I also think I have a more spiritual side to me now. Take my word for it, when your sick almost every day you have to believe there is something more after this and that while you are here you have to do the best you can with what you have and make your life worth living. Now, I'm not going to say thats always easy. There have been many times that I've gotten very depressed over being sick. There were days at a time that I would lie in bed in so much pain I would cry. I was so weak that it took all I had to take a bath and that was my accomplishment for that day. When I have those days I isolate. I don't call anyone. I don't want to see anyone except for the very few people that I allow to see me this way. That would be my son and my best friend, Tony. He's been there for me at times where I didn't think I wanted to be here anymore. He's sat next to me in bed watching TV, and movies, playing cards. How many people would do that for you? Not many. And I don't want people to see me when I'm that sick. I don't want them feeling bad for me. I want them to see me when I feel good and can enjoy being with them. So, when people do see me I usually look good, not like I have an illness. I think this confuses alot of people. They wonder, how can she look so good on the outside and feel so horrible on the inside. Well, I always try to look my best when I go anywhere. It's something I think I learned from my mom. She would always put on her makeup even if she was just going to the store for a few things. My illness is not easy for alot of people to understand. Heck, I don't understand it, and I have it! I think the thing that hurts the most is when the people in your life don't understand and sometimes unknowingly make you feel that it isn't all that serious. There are several articles that state that many people with this illness can not function as well as people with such serious illnesses as cancer and AIDs. This is because they have treatments to help people to fight these diseases and sometimes cure them. Even if they can't be cured they can lead a more normal life than many patients with Chronic Fatigue Syndrome and Fibromyalgia. I am going to find some of these articles and post them at a later date.
They don't know what causes it and they don't have any cures and very few effective treatments. Basically, they treat the symptoms as well as they can. However, the overwhelming fatigue is one of the most difficult to treat and is what gets me down the most. Ironically, I can't fall asleep until 3 in the morning. Why is this? Well, along with this illness comes sleep disturbance. The brain has night and day confused. So, often times I have more energy at 1 am then during the day. What is there to do at 1am? All I can say is Thank God for the internet! LOL It really is a life saver for those who can't get out alot. It's a way of socializing and keeping yourself entertained. So this is basically my life at this time. I still have hope that they will find a treatment for CFS that will allow me to lead a more functional life. There are some new discoveries that have just come out in the press and were even on the Dr Oz show regarding a virus they feel could very well be at the root of this illness. If it turns out that this is true there are some anti viral medications already in use that may prove promising. So, I'm keeping my fingers crossed and for now taking it one day at a time because thats all I can do.
I hope I have helped some people to better understand this illness and know what someone they know and love is going through. Sometimes you might feel helpless. That there's nothing you can do to help. However, once again, it's the little things that really do make a difference. A phone call, a visit, asking if they need anything. Also, if there are times when the person can go out but you aren't sure if you should ask them because you don't want them to feel bad if they can't. Ask them! Just knowing that someone cares enough and enjoys your company enough that they would thnk of you and want you there makes you feel so good and really lifts your spirits. Even if we can't go we know that you thought of us and that is what really matters :)
I will be writing and keeping you up to date on how things are going in this girl's life with CFS. I will also post links to sites I think might be informative and sites where you can find the support of others who suffer with the same or similar illnesses. Thank you for reading and hope you come back to visit!
LINKS TO CFS/FMS SUPPORT GROUP
Here are two links to support groups on yahoo. There is also a support chat room on yahoo messenger nearly every night. If you are interested contact Eddiebauer98055@yahoo.com. The first link is geared toward trying to help people with CFS/FMS find a possible companion/mate/ friend with a the same or a similar illness.
Febraury 4, 2010
I haven't been on much, which is actually a good sign. I've been having alot of good days lately. (knock on wood) I recently increased my zoloft dosage from 100 to 200 mgs. Since, I have noticed a huge change. I am so much less achy and have more energy. My mood is alot better and my anxiety alot less. I hope things stay this way. I also am taking an anti viral medication that I was on in the early 90's and it seemed to help back then. I felt I had reached the most recovery from it that I could so I stopped taking it. In the last few years I have seemed to go downhill again. Through a great deal of searching I found a Dr who was still giving some patients that were in the past study the anti viral medicine I had taken years ago. So, I am not sure if its the zoloft increase or the anti viral or a combination of both but I'm just going to hope it keeps working. Last week I had Company on Thursday, Friday, Saturday, Sunday, and Monday and I had such a great time. I played texas hold em Saturday. Sunday I got to spend time with my 16 month grand daughter, who is too adorable for words. I'll post some pics when I learn how. Oh and yesterday I actually went out and visited a friend, which was nice. But today I had a rough day because my son is in a Technical college and he hasn't been doing the work or attending many classes. This brought on great stress and I felt it most of the day. Well, when he got home from work we sat down and I helped him do some homework that is overdue. He has much catching up to do but I know he can do it and I'm going to be here to help him. He's such a smart kid but he has alot of trouble focusing. He was diagnosed with ADHD when he was in third grade. Its been an uphill battle but we will keep trying. I'll be back soon to keep you posted on my life with CFS.
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