Guest guest Posted August 14, 2007 Report Share Posted August 14, 2007 Hi everyone! My name is and I am a new member of the group. I am in a middle of a move, so I haven't been able to post, but I wanted to introduce myself. I am in my early 40s and have been dealing with fibromyalgia since 2001. I had a good career before then that came to a screeching halt. I am married and have a standard poodle that works as my service dog. I am training his replacement at the moment who is also a standard poodle. I plan to retire my first service dog in a few years (and he will remain a member of our family). Until a few years ago, I was basically bedridden with my symptoms. Through the help of my doctor, Dr. Berndston of Chicago,, and the works of Dr. Lowe (www.drlowe.com) we discovered that I was thyroid resistant. I now take Cytomel (T3 thyroid hormone) which has been helping me. The next step I am attempting is the Marshall Protocol (www.marshallprotocol.com). I haven't started it yet, but I'm hoping it will help me improve. While I might not be posting right away, I hope I get to know the members of the group and become a participating member here. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2008 Report Share Posted February 4, 2008 Dear Group; I got so busy with moving and starting the new treatment I posted about before, I didn't get to properly participate here. I'm posting on my fibro Yahoo groups and updating on it, just in case it helps anyone. I am on the Marshall Protocol treatment (www.marshallprotocol.com). I am three months into it and have been doing well on it. I am following all the precautions, such as wearing Noir sunglasses at all times (even indoors) and using sunscreen, covering up outside, avoiding Vitamin D and folic acid. In the beginning, about the first four days, I was dizzy on and off, which the people on the Marshall Protocol website say is due to the vitamin D getting out of your system and a rebalancing of the hormones. I have experienced some pain and joint relief, as well as less fatigue. I also have been able to reduce my thyroid dose. I also started using a C Pap at night which I think has helped with the fatigue. Even though I am not in the group of people who are primarily CPap users (usually men, overweight) I found out that during REM sleep I snore and my oxygen levels go down to 85%! I will be going into Phase Two of the protocol very soon. My doctor is on the treatment himself for sarcodoisis and he has about 5 patients now doing the treatment too. My husband is starting the protocol soon for ADD. If anyone lives in the Chicago area, I'd be happy to forward on my doctor's name. He's great! > > > Hi everyone! > > My name is and I am a new member of the group. I am in a middle > of a move, so I haven't been able to post, but I wanted to introduce > myself. > > I am in my early 40s and have been dealing with fibromyalgia since > 2001. I had a good career before then that came to a screeching halt. > I am married and have a standard poodle that works as my service dog. > I am training his replacement at the moment who is also a standard > poodle. I plan to retire my first service dog in a few years (and he > will remain a member of our family). > > Until a few years ago, I was basically bedridden with my symptoms. > Through the help of my doctor, Dr. Berndston of Chicago,, and > the works of Dr. Lowe (www.drlowe.com) we discovered that I was > thyroid resistant. I now take Cytomel (T3 thyroid hormone) which has > been helping me. > > The next step I am attempting is the Marshall Protocol > (www.marshallprotocol.com). I haven't started it yet, but I'm hoping > it will help me improve. > > While I might not be posting right away, I hope I get to know the > members of the group and become a participating member here. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2008 Report Share Posted February 4, 2008 Interesting that you are taking no Vitamin D as I am doing the opposite. My D levels were checked and they were dangerously low. I sure hope you are doing this with your doctor, not to question your intelligence by any means. Good luck with it, Jane *********************************************** Subject: Re: New Member Introduction6 Dear Group; I got so busy with moving and starting the new treatment I posted about before, I didn't get to properly participate here. I'm posting on my fibro Yahoo groups and updating on it, just in case it helps anyone. I am on the Marshall Protocol treatment (www.marshallprotocol.com). I am three months into it and have been doing well on it. I am following all the precautions, such as wearing Noir sunglasses at all times (even indoors) and using sunscreen, covering up outside, avoiding Vitamin D and folic acid. In the beginning, about the first four days, I was dizzy on and off, which the people on the Marshall Protocol website say is due to the vitamin D getting out of your system and a rebalancing of the hormones. I have experienced some pain and joint relief, as well as less fatigue. I also have been able to reduce my thyroid dose. I also started using a C Pap at night which I think has helped with the fatigue. Even though I am not in the group of people who are primarily CPap users (usually men, overweight) I found out that during REM sleep I snore and my oxygen levels go down to 85%! I will be going into Phase Two of the protocol very soon. My doctor is on the treatment himself for sarcodoisis and he has about 5 patients now doing the treatment too. My husband is starting the protocol soon for ADD. If anyone lives in the Chicago area, I'd be happy to forward on my doctor's name. He's great! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2008 Report Share Posted February 5, 2008 , Thanks for sharing your experience. What were your Vit. D levels? My levels are high and the doctor I was seeing suggested a protocol similar to MP, but without limiting Vit. D (even though I'm too high), just using the blood pressure meds. > > There's a reason Vitamin D or sun exposure makes you feel good when > you are not on the MP. I will look it up on the MP site and report > back why that is...don't know off the top of my head. > > Not only am I doing this with a doctor's oversight, my doctor is on > the protocol for his own disease. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2008 Report Share Posted February 5, 2008 : The level the MP suggests is 12.5 nmol (I think). I had to have the tests done twice, due to improper handling by the lab (they didn't freeze it right) and I don't remember the second set. My results are below and the comments by the nurse on the group: My post: Include the measurements for both tests, 1,25D & 25D, noting either ng/ml and pg/ml or the metric equivalent; nmol or pmol.* Vitamin D 25-Hyddroxy 33.5 ng/ml Vitamin D, 1.25 Dihydroxy 24.2 pg/ml My doctor said that he thought my results were skewed, but he is going to start me on the Benicar anyhow. Nurse response: Doc is right. Both results are odd. The 1,25-D is too low for someone with your symptoms. Since it was done by Labcorp we can assume, once again, improper handling of the sample. Your 25-D is unusually high for someone who has not taken vitamin D supplements. Because 25-D is immunosuppressive, you need to avoid ALL sources of Vitamin D to get it down to a therapeutic level of 12ng/ml or less. Please see Foods To Avoid and The importance of avoiding vitamin D. It's good that Doc is willing to do a therapeutic probe. _______________ If anyone wants to follow my postings, they are under goobygirl on the site. People post progress reports and you can read what other people with other illnesses react to the protocol. > > , > > Thanks for sharing your experience. What were your Vit. D levels? My > levels are high and the doctor I was seeing suggested a protocol > similar to MP, but without limiting Vit. D (even though I'm too high), > just using the blood pressure meds. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2008 Report Share Posted February 6, 2008 Wow! My levels were 59 for 1.25D and 47 for 25D. Maybe I need to break out the sunglasses! > > : > > The level the MP suggests is 12.5 nmol (I think). I had to have the > tests done twice, due to improper handling by the lab (they didn't > freeze it right) and I don't remember the second set. My results are > below and the comments by the nurse on the group: > > My post: > > Include the measurements for both tests, 1,25D & 25D, noting either > ng/ml and pg/ml or the metric equivalent; nmol or pmol.* > > Vitamin D 25-Hyddroxy 33.5 ng/ml > > Vitamin D, 1.25 Dihydroxy 24.2 pg/ml > > My doctor said that he thought my results were skewed, but he is going > to start me on the Benicar anyhow. > > Nurse response: > > Doc is right. Both results are odd. The 1,25-D is too low for someone > with your symptoms. Since it was done by Labcorp we can assume, once > again, improper handling of the sample. > > Your 25-D is unusually high for someone who has not taken vitamin D > supplements. Because 25-D is immunosuppressive, you need to avoid ALL > sources of Vitamin D to get it down to a therapeutic level of 12ng/ml > or less. Please see Foods To Avoid and The importance of avoiding > vitamin D. > > It's good that Doc is willing to do a therapeutic probe. > > _______________ > > If anyone wants to follow my postings, they are under goobygirl on the > site. People post progress reports and you can read what other people > with other illnesses react to the protocol. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2008 Report Share Posted February 6, 2008 , I couldn't say, I guess it all depends on your symptoms. But, the sunglasses I wear are Noirs, they block out certain spectrum of sunlight. Normal sunglasses aren't enough. Sometimes if people stop with the Vitamin D and sunlight they can feel better, sometimes the bacteria revolt, and you feel worse. But, it might be worth looking into. I will tell you though, if you do it half way, you'll not get the best results you could possibly get. Best of luck. > Wow! My levels were 59 for 1.25D and 47 for 25D. Maybe I need to break > out the sunglasses! > > > > > > > > : > > > > The level the MP suggests is 12.5 nmol (I think). I had to have the > > tests done twice, due to improper handling by the lab (they didn't > > freeze it right) and I don't remember the second set. My results are > > below and the comments by the nurse on the group: > > > > My post: > > > > Include the measurements for both tests, 1,25D & 25D, noting either > > ng/ml and pg/ml or the metric equivalent; nmol or pmol.* > > > > Vitamin D 25-Hyddroxy 33.5 ng/ml > > > > Vitamin D, 1.25 Dihydroxy 24.2 pg/ml > > > > My doctor said that he thought my results were skewed, but he is going > > to start me on the Benicar anyhow. > > > > Nurse response: > > > > Doc is right. Both results are odd. The 1,25-D is too low for someone > > with your symptoms. Since it was done by Labcorp we can assume, once > > again, improper handling of the sample. > > > > Your 25-D is unusually high for someone who has not taken vitamin D > > supplements. Because 25-D is immunosuppressive, you need to avoid ALL > > sources of Vitamin D to get it down to a therapeutic level of 12ng/ml > > or less. Please see Foods To Avoid and The importance of avoiding > > vitamin D. > > > > It's good that Doc is willing to do a therapeutic probe. > > > > _______________ > > > > If anyone wants to follow my postings, they are under goobygirl on the > > site. People post progress reports and you can read what other people > > with other illnesses react to the protocol. > > > > > Quote Link to comment Share on other sites More sharing options...
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