Friday must have knocked more stuffing out of me than I realized. Either that or the cheating on my diet is starting to kick in. Or, option number three, I had one of those weird CFS adrenaline rushes last night and I'm crashed today as a result. Or all of the above.
I'm tired today. My muscles don't want to work right. I'm dragging mentally as well as physically. It is just one of those CFS things. I slept for two hours this afternoon spending a total of three and half hours in bed. Tonight was a busy night of TV and internet. I'm just beginning to feel a bit better. I think one more night of good sleep and I should be back to "normal" tomorrow.
Yesterday I was tired from Friday. However I baked biscuits for dinner later in the afternoon. I'M BAKING!!!! A few months ago I would never have believed that I would be baking again. So I'm not worried about today. Its just a hiccup. I'll work on my diet some more. Stop drinking coffee and eating sugar and sneaking grains. Things will continue to improve. I see more cooking and even some sewing in my near future and I'm excited.
Monday, October 31, 2011
Sunday, October 30, 2011
The Lipkin Study
The most current news I could find on the Lipkin study: http://phoenixrising.me/?p=5778
Please note that it is dated prior to the implosion of WPI so I'm not sure if the study will continue as described.
Please note that it is dated prior to the implosion of WPI so I'm not sure if the study will continue as described.
Saturday, October 29, 2011
The Good Doctor
I went to see one of the world's experts on CFS today. He said I have CFS, they don't know what causes it and there is no cure.
Now normally I would have a very sarcastic response to this. However, my main purpose in going to see him was to confirm my diagnosis. That way the insurance companies can go suck it. I now have three doctors on record saying I have CFS. One of them being an expert from Harvard Medical School. So yay me!!
The second reason I went there was to see if he had any other tricks up his sleeve for treatments that my other docs haven't tried yet. He took blood samples and will make recommendations based on the results. I have a follow up appointment with him in February and should expect a letter with the test results in roughly two weeks.
However, by the end of the visit I had the distinct impression that he is not a patient centered practice. The biggest clue was that he had no idea what veinous insufficiency is and how it might relate to my dizzy spells and almost passing out during the tilt table test. I've read in the literature that this is common and somehow related to CFS but he didn't know anything about it. Don't get me wrong. He is really nice. He listened to everything I had to say. He asked lots of pertinent questions but his main purpose in life is research work into CFS markers. He sees patients so that he can find candidates to donate blood for his research work.
This only mildly bothers me. I went there expecting this so it wasn't too much of a surprise but I do know of one patient that was infuriated by this. She had gone there expecting help with her symptoms and didn't come away with anything. Myself? I signed a waver and left him with several extra vials of blood and a spit sample for his research work. Anything I can do to advance the cure. I'll never go into medicine at this point so giving my blood, spit and filling out surveys are the best I can do. But, it would have been nice to have a few more tools offered to me to help treat the symptoms of the CFS.
The other cool thing that came out of our visit is that I will probably be asked to participate in the Lipkin study. Woohoo!! That is so neat.
We did discuss glutathione and my diet. He was happy it was helping and we agreed that we couldn't untangle how each piece was helping me and if my improvement was due to one or the other or the combination of the two. He took notes on my diet and didn't bat an eyelash when I mentioned raw dairy. Curiouser and curiouser.
One last note: I was really impressed with Brigham and Women's facility but damn they need better signage. We got seriously lost trying to get to the clinic.
Now normally I would have a very sarcastic response to this. However, my main purpose in going to see him was to confirm my diagnosis. That way the insurance companies can go suck it. I now have three doctors on record saying I have CFS. One of them being an expert from Harvard Medical School. So yay me!!
The second reason I went there was to see if he had any other tricks up his sleeve for treatments that my other docs haven't tried yet. He took blood samples and will make recommendations based on the results. I have a follow up appointment with him in February and should expect a letter with the test results in roughly two weeks.
However, by the end of the visit I had the distinct impression that he is not a patient centered practice. The biggest clue was that he had no idea what veinous insufficiency is and how it might relate to my dizzy spells and almost passing out during the tilt table test. I've read in the literature that this is common and somehow related to CFS but he didn't know anything about it. Don't get me wrong. He is really nice. He listened to everything I had to say. He asked lots of pertinent questions but his main purpose in life is research work into CFS markers. He sees patients so that he can find candidates to donate blood for his research work.
This only mildly bothers me. I went there expecting this so it wasn't too much of a surprise but I do know of one patient that was infuriated by this. She had gone there expecting help with her symptoms and didn't come away with anything. Myself? I signed a waver and left him with several extra vials of blood and a spit sample for his research work. Anything I can do to advance the cure. I'll never go into medicine at this point so giving my blood, spit and filling out surveys are the best I can do. But, it would have been nice to have a few more tools offered to me to help treat the symptoms of the CFS.
The other cool thing that came out of our visit is that I will probably be asked to participate in the Lipkin study. Woohoo!! That is so neat.
We did discuss glutathione and my diet. He was happy it was helping and we agreed that we couldn't untangle how each piece was helping me and if my improvement was due to one or the other or the combination of the two. He took notes on my diet and didn't bat an eyelash when I mentioned raw dairy. Curiouser and curiouser.
One last note: I was really impressed with Brigham and Women's facility but damn they need better signage. We got seriously lost trying to get to the clinic.
Friday, October 28, 2011
More on Gut Bacteria
Discovery News
Science News
As I stated before, I think I'm onto something here. I think the combination of glutathione for detox and food to rebuild my guts is the right way to go. I'm doing fantastic. It takes 3-6 months to get the healing process cranking. For complete healing it can be up to two years according to the GAPS author. When my body is doing better and I can detox without the aid of the IVs I will probably do the GAPS intro diet. I would love my guts to work normally. Once my guts are working I will probably continue with Weston Price as my daily diet. Returning to the SAD is out of the question but it would be nice to be able to eat the odd sandwich without having horrible repercussions.
BTW, grains and sugars are creeping back into my diet. I have to stop cheating if I want to heal properly.
"The Gist:
- Research shows that gut bacteria can affect obesity and even behavior.
- New findings show that gut bacteria play a role in the development of multiple sclerosis in mice.
- Studies could lead to a better understanding of disease and offer a solution of stool transplants."
Science News
"Previous reports had indicated that gut bacteria might be involved in autoimmune disorders such as MS, juvenile diabetes and arthritis, says Simon Fillatreau, an immunologist at the German Rheumatism Research Center in Berlin."
As I stated before, I think I'm onto something here. I think the combination of glutathione for detox and food to rebuild my guts is the right way to go. I'm doing fantastic. It takes 3-6 months to get the healing process cranking. For complete healing it can be up to two years according to the GAPS author. When my body is doing better and I can detox without the aid of the IVs I will probably do the GAPS intro diet. I would love my guts to work normally. Once my guts are working I will probably continue with Weston Price as my daily diet. Returning to the SAD is out of the question but it would be nice to be able to eat the odd sandwich without having horrible repercussions.
BTW, grains and sugars are creeping back into my diet. I have to stop cheating if I want to heal properly.
Glutathione IV: Week Six; Part One
1000mg today. No nausea. No car sickness on the way home. I'm wiped out but didn't have to sleep like last week. I even had a glass of milk with no repercussions.
Tomorrow I see Dr. Komaroff. I was putting my medical notes together and was reading the notes I made two weeks ago for my bimonthly primary visit. I can't believe the difference in just two weeks. I'm cooking everyday now. Not just breakfast and dinner but extras like muffins and bread and yogurt. I'm standing for longer periods. I'm walking around stores again. I walked into the library today which is the first time in months. I even made it into the stacks. I can't remember the last time I was wandering the rows of books instead of hanging out in the new book alcove on the first floor. I drove yesterday. Again another first in months. I stood for part of my shower today. This morning before my appointment I made muffins and eggs for breakfast, threw together dinner in the crockpot and then showered and I was still okay for the trip to the Marino Center. Here I am still awake. No nap. No collapse. No neuro symptoms. WOW!!! I'm tired but WOW!
I'm curious what the famous doc is going to say. Is he is going to scold me for drinking raw milk? Is he going to be offended that I'm having glutathione IVs? Is he going to scoff at my supplement regimen? The assistant couldn't believe some of the stuff I'm taking. Of course I wasn't taking any of the traditional western medicine stuff she listed off. This is going to be interesting.... I'll let you know what happens.
Tomorrow I see Dr. Komaroff. I was putting my medical notes together and was reading the notes I made two weeks ago for my bimonthly primary visit. I can't believe the difference in just two weeks. I'm cooking everyday now. Not just breakfast and dinner but extras like muffins and bread and yogurt. I'm standing for longer periods. I'm walking around stores again. I walked into the library today which is the first time in months. I even made it into the stacks. I can't remember the last time I was wandering the rows of books instead of hanging out in the new book alcove on the first floor. I drove yesterday. Again another first in months. I stood for part of my shower today. This morning before my appointment I made muffins and eggs for breakfast, threw together dinner in the crockpot and then showered and I was still okay for the trip to the Marino Center. Here I am still awake. No nap. No collapse. No neuro symptoms. WOW!!! I'm tired but WOW!
I'm curious what the famous doc is going to say. Is he is going to scold me for drinking raw milk? Is he going to be offended that I'm having glutathione IVs? Is he going to scoff at my supplement regimen? The assistant couldn't believe some of the stuff I'm taking. Of course I wasn't taking any of the traditional western medicine stuff she listed off. This is going to be interesting.... I'll let you know what happens.
Wednesday, October 26, 2011
Mystery Solved
Talked to my doc today. Thank goodness he didn't train in the US. We discussed the last IV I had and all the weird stomach symptoms I've been having plus all the diet changes I've made. And guess what!?! I've been eating too healthy! Yup too much cabbage and kale in my diet. Turns out they both cause the generation stomach acid. My doc used to do this on purpose where he trained in medicine so that they could measure a person's ability to produce stomach acid. They would make the patient fast and then feed them cabbage. Hence I gave myself a sour stomach from eating kale daily and of course the huge load of cabbage I ate last Saturday. Not to mention trying kraut juice.
So, the current game plan is to get my IV of 1000mg tomorrow as scheduled. No more kale, cabbage or kraut juice until my stomach settles back to normal. Then I start introducing kale back in slowly. When I can tolerate it I can start adding cabbage juice back in but only a tablespoon at a time. Then I can add actual cabbage.
I knew that beets and kraut could give me trouble but I never considered cabbage or kale to be a problem. I grew up eating cabbage, cauliflower, broccoli and brussel sprouts. I love them. I stopped eating them since hubby hates them. I was very excited to reintroduce cabbage into my diet and was excited to try new leafy greens. Turns out that I love kale and swiss chard. However, I never knew that I had to slowly introduce them into my diet. Of course my stomach being testy has been a problem since I first contracted CFS. I couldn't eat during the entire first month of the illness and my acupuncturist put me on double boiled rice so that I could get something down. I dropped ten pounds during that time period. Not the recommended way to loose weight.
Anyway, mystery solved. It wasn't the glutahione. I just have to go more slowly with the diet changes.
So, the current game plan is to get my IV of 1000mg tomorrow as scheduled. No more kale, cabbage or kraut juice until my stomach settles back to normal. Then I start introducing kale back in slowly. When I can tolerate it I can start adding cabbage juice back in but only a tablespoon at a time. Then I can add actual cabbage.
I knew that beets and kraut could give me trouble but I never considered cabbage or kale to be a problem. I grew up eating cabbage, cauliflower, broccoli and brussel sprouts. I love them. I stopped eating them since hubby hates them. I was very excited to reintroduce cabbage into my diet and was excited to try new leafy greens. Turns out that I love kale and swiss chard. However, I never knew that I had to slowly introduce them into my diet. Of course my stomach being testy has been a problem since I first contracted CFS. I couldn't eat during the entire first month of the illness and my acupuncturist put me on double boiled rice so that I could get something down. I dropped ten pounds during that time period. Not the recommended way to loose weight.
Anyway, mystery solved. It wasn't the glutahione. I just have to go more slowly with the diet changes.
Tuesday, October 25, 2011
Tummy Troubles
I have been having moderate tummy troubles this week. There are several suspects to blame so I really don't know which one caused the problems.
Possible causes:
Possible causes:
- Glutathione?
- The crappy sauerkraut I made last week? Yes, I tasted it before I chucked it out.
- The new raw milk I bought last week from a different farm? They had been shut down about a month ago and reopened after they passed further testing by the state.
- The new yogurt I just made? Highly unlikely since I was having this problem last week before I made it and tasted it.
- Stomach is rebelling against the new diet?
- Going through herx from die off from diet?
- Not handling the high fat diet well due to lack of gall bladder?
- Drinking Kombucha that got left out overnight? That shouldn't be a problem since this stuff is brewed at room temp.
- Got a stomach bug?
- Simply doing too much? Mom is here so I'm more active than normal.
Stuff I'm doing to help it:
- Drinking bentonite clay. This helps but only temporarily.
- Taking activated charcoal caps. Again helps but only temporarily.
- Avoiding cultured foods.
- Made chicken soup today. Only food I could even consider eating.
- Drinking peppermint tea. Drinking water and lemon water makes it worse.
The only symptom is discomfort. Occasionally it turns into full blown heartburn and I have to resort to using Pepto Bismol but generally I simply have no appetite and feel yukky. It isn't nausea. I do have some burping, farting and tummy rumbling but nothing else. It is truly odd.
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