Hello there. It's been awhile again since I've posted a blog. But you know what happens when you make plans. Life sometimes gets in the way. All is still seemingly going well with my treatment so far. Emotionally though, I've been a mess. It is hard enough for a healthy person to get through the stresses of life. It is that much harder for an ill person. I feel like I keep getting hit withs waves from the ocean. I barely manage to get up and catch my breath, and then I am hit with another. For managing CFS it is so important to live as stress free as possible in order to feel my best. For now I am going to take a break from the blog, and focus on working through the various issues I'm facing in my life. I am still doing some writing though from time to time just to vent. Thank you all so much for taking the time to read my blog. I hope to get back to it in the future.
Linda
Thursday, May 6, 2010
Thursday, April 15, 2010
Day 10
I know it's been awhile, but I'm still here! Some days I've had to wonder if my illness is all in my head. All I had was my subjective information to give to my doctors and the ruling out of many other illnesses with many tests.
I went to my second visit to my new doctor specializing in CFS/FM yesterday, and went over all of the blood test results. There are some IGG tests done to test your immune system's reaction to certain viruses. Many people are exposed to viruses throughtout life, and may have some initial illness from them, but then the virus becomes latent. (inactive) For a person with a healthy immune system, these do not cause any issues later in life. My blood tests show that I was exposed to Herpes Virus 6 (an airborn virus) and Epstein Barr Virus and they are active in my body. While no one knows yet what exactly the relationship is between CFS and these types of viruses, having them reactivated is very common in these people. My doctor has prescribed a supplement called Lauricidin which according to many tests is proven to kill these viruses. My doctor says he starts with this treatment because many patients do well with it, and the viruses do not become immune to it over time. If that doesn't work, I will be on an antiviral treatment. I wasn't shocked by the news. While it's not good to hear I have viruses I'm fighting, finally getting some answers to my questions is a relief. It is also a relief to know I am in good hands with my doctor, and I have confidence in his ability to treat me. Some good news, one of the lab tests tested my immune response. My doctor told me most patients coming in to see him have an immune response 10-20% of what it is supposed to be. Mine is at 60% of what it should be. Hooray for my immune system!
I also had thyroid tests done too. While my T4 level is normal, my body's ability to transform T4 into T3 is not what it should be, so I will be taking supplemental T3. The doctor says that will really help with my fatigue.
Last week I had a urine test sent to a lab for heavy metal toxicity. I won't know the results until my next appointment in May. Heavy metals toxicity is often common in those with CFS. (and people without CFS!)
Maybe some of you recall my mention of stress management as part of the treatment. It involves journaling about stressful things in your life and seeing a CBT. (Cognitive Behavioral Therapist) I can start journaling, but the CBT will have to wait until I can afford it. While stress is not a cause of CFS, it is considered a part of it. They found many people with CFS were type A people who had to go, go go, all of the time. Yes, I was one of them! A Cognitive Behavioral Therapist can help you to identify the reasons for that kind of drive, and help you find ways to change that behavior. Interesting stuff!
I hope your having a good week.
Until some other time...
Linda
I went to my second visit to my new doctor specializing in CFS/FM yesterday, and went over all of the blood test results. There are some IGG tests done to test your immune system's reaction to certain viruses. Many people are exposed to viruses throughtout life, and may have some initial illness from them, but then the virus becomes latent. (inactive) For a person with a healthy immune system, these do not cause any issues later in life. My blood tests show that I was exposed to Herpes Virus 6 (an airborn virus) and Epstein Barr Virus and they are active in my body. While no one knows yet what exactly the relationship is between CFS and these types of viruses, having them reactivated is very common in these people. My doctor has prescribed a supplement called Lauricidin which according to many tests is proven to kill these viruses. My doctor says he starts with this treatment because many patients do well with it, and the viruses do not become immune to it over time. If that doesn't work, I will be on an antiviral treatment. I wasn't shocked by the news. While it's not good to hear I have viruses I'm fighting, finally getting some answers to my questions is a relief. It is also a relief to know I am in good hands with my doctor, and I have confidence in his ability to treat me. Some good news, one of the lab tests tested my immune response. My doctor told me most patients coming in to see him have an immune response 10-20% of what it is supposed to be. Mine is at 60% of what it should be. Hooray for my immune system!
I also had thyroid tests done too. While my T4 level is normal, my body's ability to transform T4 into T3 is not what it should be, so I will be taking supplemental T3. The doctor says that will really help with my fatigue.
Last week I had a urine test sent to a lab for heavy metal toxicity. I won't know the results until my next appointment in May. Heavy metals toxicity is often common in those with CFS. (and people without CFS!)
Maybe some of you recall my mention of stress management as part of the treatment. It involves journaling about stressful things in your life and seeing a CBT. (Cognitive Behavioral Therapist) I can start journaling, but the CBT will have to wait until I can afford it. While stress is not a cause of CFS, it is considered a part of it. They found many people with CFS were type A people who had to go, go go, all of the time. Yes, I was one of them! A Cognitive Behavioral Therapist can help you to identify the reasons for that kind of drive, and help you find ways to change that behavior. Interesting stuff!
I hope your having a good week.
Until some other time...
Linda
Monday, April 5, 2010
Day 9
I have quickly figured out that wanting to write a daily blog is difficult to do! Not only because of time and energy limitations, but some days are not that inspiring. I wake up and think, "Same stuff different day!"
I had a very draining day on Friday with dealing with one of my kittens who was injured back in February. She was not able to use her back legs at all. I thought for sure we would have to put her to sleep. The good news is, after giving her steroids over the weekend, she is walking today. More good news, I was able to somehow get through that draining day. It helped that my husband was able to leave work early that day to come home. I'm just hoping it doesn't all catch up with me in a few days. I don't want to push things, so I'm taking it easy today.
I'm still continuing on the green smoothies, enzymes, B12 shots and glutathione cream. I have also increased my D3 intake by 2000 i.u. over the last 2 weeks. (doctor's orders) Vitamin D3 has been found to kill many viruses and boosts the immune system.
Overall, I think I'm doing better since starting my treatment. I may not have a lot of physical energy, but I do seem to have a lot less brain fog going on. For that I am thankful!
Until tomorrow...(or whenever!)
Linda
I had a very draining day on Friday with dealing with one of my kittens who was injured back in February. She was not able to use her back legs at all. I thought for sure we would have to put her to sleep. The good news is, after giving her steroids over the weekend, she is walking today. More good news, I was able to somehow get through that draining day. It helped that my husband was able to leave work early that day to come home. I'm just hoping it doesn't all catch up with me in a few days. I don't want to push things, so I'm taking it easy today.
I'm still continuing on the green smoothies, enzymes, B12 shots and glutathione cream. I have also increased my D3 intake by 2000 i.u. over the last 2 weeks. (doctor's orders) Vitamin D3 has been found to kill many viruses and boosts the immune system.
Overall, I think I'm doing better since starting my treatment. I may not have a lot of physical energy, but I do seem to have a lot less brain fog going on. For that I am thankful!
Until tomorrow...(or whenever!)
Linda
Wednesday, March 31, 2010
Day 8
Sorry I haven't been writing consistantly. Yesterday, I was flat out exhausted all day. It felt like it took great effort to do the bare minimum of what had to be done at home. I laid down almost the whole day. I feel lucky I don't feel like that everyday. I did still feel clear minded though. At least with all of the laying around I did, I was able to watch the movie "The Ugly Truth." The storyline was predictable, but I thought it was very funny. Quite a bit on the raunchy side.
Today, I'm feeling less fatigued, but I've been dizzy all day. Boosting my salt intake helped a little. At least I'm not in any pain. There is always something to be thankful for.
Until tomorrow...
Linda
Today, I'm feeling less fatigued, but I've been dizzy all day. Boosting my salt intake helped a little. At least I'm not in any pain. There is always something to be thankful for.
Until tomorrow...
Linda
Monday, March 29, 2010
Day 7
I woke up feeling alert and brain fog free today! I must be low in glutathione as my doctor mentioned, because I definitely feel a difference in how my brain feels since I started using the skin cream last Friday. I have not needed any caffeine for 2 days now. I hope it lasts!
I didn’t write yesterday because I was having a pity party for myself. I woke up feeling very sad, and I just couldn’t kick it for half of the day. I try to be as positive as I can, but some days I just feel sorry for myself. I guess that’s par for the course when you have a chronic illness. My husband and something funny I saw on TV finally helped me break out of it.
I used to have pain every day, shoulder, neck, and sciatic pain. At first I was using Diclofenac twice a day and Amitriptyline at night. The combo worked okay for me, but I would still get severe menstrual cramps. The kind that doesn’t respond to anything. It so happened a friend of mine was a Mona Vie distributor, and she gave me a bottle of Mona Vie Active to try. I was very skeptical, but I tried it anyway. I’ve been using it over a year now, and I am virtually pain free. I no longer need Diclofenac, and reduced my Amitriptyline dose by half. I understand that everyone’s bodies are different, and not everyone has the same success with using the same supplements. If you still have chronic pain, please keep looking for answers. Pain control is important to overall well being, and for getting better sleep. Better sleep allows your body to heal.
I’m keeping it short, because I have to get some things done today. Have a good week.
Until tomorrow…
Linda
I didn’t write yesterday because I was having a pity party for myself. I woke up feeling very sad, and I just couldn’t kick it for half of the day. I try to be as positive as I can, but some days I just feel sorry for myself. I guess that’s par for the course when you have a chronic illness. My husband and something funny I saw on TV finally helped me break out of it.
I used to have pain every day, shoulder, neck, and sciatic pain. At first I was using Diclofenac twice a day and Amitriptyline at night. The combo worked okay for me, but I would still get severe menstrual cramps. The kind that doesn’t respond to anything. It so happened a friend of mine was a Mona Vie distributor, and she gave me a bottle of Mona Vie Active to try. I was very skeptical, but I tried it anyway. I’ve been using it over a year now, and I am virtually pain free. I no longer need Diclofenac, and reduced my Amitriptyline dose by half. I understand that everyone’s bodies are different, and not everyone has the same success with using the same supplements. If you still have chronic pain, please keep looking for answers. Pain control is important to overall well being, and for getting better sleep. Better sleep allows your body to heal.
I’m keeping it short, because I have to get some things done today. Have a good week.
Until tomorrow…
Linda
Saturday, March 27, 2010
Day 6
Hi There. I’m sorry I could not write my blog yesterday. It was a pretty energy draining morning, and had nothing left to give in the afternoon and evening. Yesterday, I had to go out of town for blood work because the lab close to my house could not get a time sensitive test to the lab soon enough. I had to fast the night before. A little rough for me in the morning because I wake up with low blood sugar, and dehydrated. Normally, I have to eat something within an hour of waking up, and then every 3 hours after that. If I don’t I feel very ill. I woke up at 7 am, and rolled out the door 20 minutes later. Just in time for early morning commute traffic. It was hard to focus, but at least I wasn’t feeling fuzzy or dizzy. Just hungry and tired!
The commute was already challenging enough for me, but the directions to the lab I got from their website were wrong. I didn’t bring my portable GPS because I didn’t think I’d need it. At least I had the labs phone number. I called up and I told them the exact street and cross street I was at, and they told me, I needed to turn around, and go the other way because I drove too far. Well, it turns out I had not driven far enough. After I realized this I wanted to make a u-turn, but the next 3 intersections had no u-turn signs. After a second phone call to the lab, I finally got there at 8:50 am. I didn’t have to wait long, and went to get my blood drawn. I didn’t know just how much blood they were taking, but it was a lot. I almost fainted because of blood loss when they were on my last 4 vials. They had me lie down for quite awhile, and drink some water. That is a first. I’ve never almost fainted from having my blood drawn.
After I was done, (10 vials in all) the technician told me in the future, if I am going to have that much blood drawn, I should get it done laying down. I will keep that in mind! Luckily for me, the medical center where the lab was located, there was a pharmacy. I got a bottle of Gatorade and had that and a snack bar in the car. I called my husband from my car, and that is when I got weepy. The whole situation was draining (literally and figuratively) and not having eaten yet, just put me over the top. After I finished my snack, and dried my face, I drove home. All in all, it was a 3.5 hour event. I ate when I got home, and took a nap for 2 hours. I figure I must have been tired from losing all of that blood.
Yesterday my glutathione topical cream showed up. Many with CFS are low on this substance, but the genetic test to prove this is more expensive than trying the cream to see if it helps with fatigue. That and my levels need to be raised because I am shortly going to be going a urine test showing levels of lead and mercury in the system, and the test depletes this substance further.
Remember when I mentioned B12 shots and not being sure if I could do them myself? My husband gave one to me last night. I told him to just keep in mind, that I’m not a dart board. On the 3rd attempt, it was a success. He’s a great guy, and I’m lucky to have him in my life. So I’ll be getting 2 shots (2 ccs each) per week of B12.
Today, I almost felt alert when I woke up. So I did some light cleaning and laundry and made breakfast for the hubby. We are going to go out and about to run a few errands this weekend. I’m looking forward to it.
Until tomorrow…
Linda
The commute was already challenging enough for me, but the directions to the lab I got from their website were wrong. I didn’t bring my portable GPS because I didn’t think I’d need it. At least I had the labs phone number. I called up and I told them the exact street and cross street I was at, and they told me, I needed to turn around, and go the other way because I drove too far. Well, it turns out I had not driven far enough. After I realized this I wanted to make a u-turn, but the next 3 intersections had no u-turn signs. After a second phone call to the lab, I finally got there at 8:50 am. I didn’t have to wait long, and went to get my blood drawn. I didn’t know just how much blood they were taking, but it was a lot. I almost fainted because of blood loss when they were on my last 4 vials. They had me lie down for quite awhile, and drink some water. That is a first. I’ve never almost fainted from having my blood drawn.
After I was done, (10 vials in all) the technician told me in the future, if I am going to have that much blood drawn, I should get it done laying down. I will keep that in mind! Luckily for me, the medical center where the lab was located, there was a pharmacy. I got a bottle of Gatorade and had that and a snack bar in the car. I called my husband from my car, and that is when I got weepy. The whole situation was draining (literally and figuratively) and not having eaten yet, just put me over the top. After I finished my snack, and dried my face, I drove home. All in all, it was a 3.5 hour event. I ate when I got home, and took a nap for 2 hours. I figure I must have been tired from losing all of that blood.
Yesterday my glutathione topical cream showed up. Many with CFS are low on this substance, but the genetic test to prove this is more expensive than trying the cream to see if it helps with fatigue. That and my levels need to be raised because I am shortly going to be going a urine test showing levels of lead and mercury in the system, and the test depletes this substance further.
Remember when I mentioned B12 shots and not being sure if I could do them myself? My husband gave one to me last night. I told him to just keep in mind, that I’m not a dart board. On the 3rd attempt, it was a success. He’s a great guy, and I’m lucky to have him in my life. So I’ll be getting 2 shots (2 ccs each) per week of B12.
Today, I almost felt alert when I woke up. So I did some light cleaning and laundry and made breakfast for the hubby. We are going to go out and about to run a few errands this weekend. I’m looking forward to it.
Until tomorrow…
Linda
Thursday, March 25, 2010
Day 5
Hello All. Today’s blog will be a little short. Being that my brain is clearer today, I have a lot to do around here. Like reading the handouts from my new doctor!
Today I had a dress rehearsal for my blood drawing for blood tests. I say dress rehearsal because after telling the technician one of the tests is time sensitive, I found out that office I went to could not accommodate my needs. So tomorrow morning I get to drive to another city (45 minutes away) and get it done.
I also found out today that I will be receiving vitamin B12 and a bunch of syringes. Hmmm…I’ve been needle phobic most of my life, but over time I have become desensitized to being poked and prodded by others. The thought of trying to give one to myself? That makes me feel nauseous. Maybe I can do it, I don’t know.
Today I started part of my new protocol. The aim of it is to get my gut back to normal. I’m taking enzymes to break down the biofilm in my intestines where the bad organisms live, while taking probiotics and prebiotics to help colonize it with good organisms. Science or science fiction? We’ll see how I feel after 3 months of this. I’m also going to make my first green smoothie today recommended by my doctor. I’ll be using baby spinach, water and some fruit, and adding some flax seed meal. Sounds yummy doesn’t it?
Until tomorrow…
Linda
Today I had a dress rehearsal for my blood drawing for blood tests. I say dress rehearsal because after telling the technician one of the tests is time sensitive, I found out that office I went to could not accommodate my needs. So tomorrow morning I get to drive to another city (45 minutes away) and get it done.
I also found out today that I will be receiving vitamin B12 and a bunch of syringes. Hmmm…I’ve been needle phobic most of my life, but over time I have become desensitized to being poked and prodded by others. The thought of trying to give one to myself? That makes me feel nauseous. Maybe I can do it, I don’t know.
Today I started part of my new protocol. The aim of it is to get my gut back to normal. I’m taking enzymes to break down the biofilm in my intestines where the bad organisms live, while taking probiotics and prebiotics to help colonize it with good organisms. Science or science fiction? We’ll see how I feel after 3 months of this. I’m also going to make my first green smoothie today recommended by my doctor. I’ll be using baby spinach, water and some fruit, and adding some flax seed meal. Sounds yummy doesn’t it?
Until tomorrow…
Linda
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