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ChristineL
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Posted: Fri Nov 21st, 2008 20:32 |
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| I've spent some time looking for information related to people who can not stay completely out of day light due to familly or work obligations, but I'm having difficulty finding any. I'm also wondering how people cover up inside when they can't block out all the natural light. Can anyone point me to info on this??
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Hashimoto CFS like symptoms synthroid ph1Nov08 light exp r/t work & kids cover up at home NoIRs
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ChristineL
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Posted: Sat Nov 22nd, 2008 12:10 |
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Does it matter which reply button I hit to post in my thread? I haven't gotten a response to my last few posts. I understand some get missed and everyone is volunteering here. I just wanted to make sure I was posting correctly.
I am having a difficult time avoiding daylight %100 and I'm very worried about it. I have two small kids and a job. I can't block all of the indirect daylight from my house. I was hoping someone can point me to info on others who have been through this and any advice. Is covering up inside the house with only some indirect light okay (meaning face and sometimes hands exposed). Thanks for your help!
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Hashimoto CFS like symptoms synthroid ph1Nov08 light exp r/t work & kids cover up at home NoIRs
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ChristineL
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Posted: Mon Nov 24th, 2008 13:46 |
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| I took my second dose of mino yesterday and since I started it, I've been having a horrible time with lightheadness and severe nausea whenever I get overheated - which is often - like when I'm covering up to avoid day light or take a shower. I'm trying to keep the layers light and showers cool as I can tolerate (because, ironicly, I'm very cold most of the time). Is this related to a sun/light flare or is it increasing IP due to increase body temp. I'm really struggling with this symptom - especially since it's been very rocky since I started the benicar 2-1/2 weeks ago.
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Hashimoto CFS like symptoms synthroid ph1Nov08 light exp r/t work & kids cover up at home NoIRs
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Julia
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Posted: Mon Nov 24th, 2008 17:45 |
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Hi Christine,
It doesn't matter which reply button you hit. If an important question gets overlooked, just reply to it yourself with the word 'bump' to bring it back to the top of the list 
I hope you now have the 8 hour Benicar blockade in place. The 8 hour schedule is a bare minimum; 6 hours is recommended, but you can go for 8 at night to get a good sleep.
Many of us have got better without the very tight light restrictions that some need. What are the new recommendations regarding sun exposure? You'll find out for yourself by linking bad times with too much light exposure (make sure you keep a diary of your symptoms so that you can see things like that). For example, although I wasn't extremely light sensitive, I knew when I'd overdone it by insomnia and leg cramps.
Your discomfort sounds like IP. See How To Manage Immunopathology - esp. the section What to do when immunopathology (immune system reaction) is too strong. Go slowly as per the phase 1 guidelines. Slow and steady wins the race
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ChristineL
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Posted: Wed Nov 26th, 2008 17:20 |
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Thank you for your reply Julia. I do have the benicar blockade in place now. I take it every 6 hours except for overnight, where I get close to, but do not surpass 8 hours.
Interesting IP: I have had 4 tonsillectomies due to nasty ingrown infections in my tonsil tissue or regrowth of tonsil tissue. With each Herx (I'm on my third dose of Mino) my "tonsil area" feels inflamed, hot, and hurts just like it did when I had these infections. (it's been about six years since my last tonsillectomy). It's so interesting!
-christine
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Hashimoto CFS like symptoms synthroid ph1Nov08 light exp r/t work & kids cover up at home NoIRs
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ChristineL
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Posted: Tue Dec 9th, 2008 18:16 |
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I am having a hard time determining if some of my symptoms are from the IP or from too much light. I am exposed to light going to/from work and I have small children I have to take places at times. I try to avoid light as much as possible, but I'm not sure if it is even causing me a problem. I wear the noiirs all the time although I'm not sure how photosensive I am. I had a very rocky first 3 weeks, but things have settled down now. My 1,25 D was 65 and I think I had major hormonal adjustments going on. Anyone have any insight on this whole light thing? Many thanks!
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Hashimoto CFS like symptoms synthroid ph1Nov08 light exp r/t work & kids cover up at home NoIRs
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ChristineL
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Posted: Thu Dec 11th, 2008 20:02 |
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I increased my mino two days ago to 50mg. I actually feel better than I did before. What if I don't Herx? I was extremely tired and cranky last night.... don't know if that counts or not??
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Hashimoto CFS like symptoms synthroid ph1Nov08 light exp r/t work & kids cover up at home NoIRs
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natalie17
Advocate
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Posted: Sun Dec 14th, 2008 09:37 |
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Hi Christine,
If you are avoiding light as much as possible, this means following;
What are the latest recommendations regarding sun/light exposure?
.. and you're unable to reduce the amount of outings you take, then I'd suggest trying to take 2 days off (maybe a weekend?) from any outings and see if you feel better.
If you do, you can discuss it further with your Doc. Regardless, it's always recommended you avoid light as much as possible - so wearing the NoIRS all the time whether you think you're sensitive or not is great .
I increased my mino two days ago to 50mg. I actually feel better than I did before. What if I don't Herx? I was extremely tired and cranky last night.... don't know if that counts or not??
Some folk do feel better after an increase of mino. I wouldn't worry about not herxing - and yes, being tired and cranky can definitely be immunopathology/herx. If you're at all concered, talk to your Doctor .
Also see;
What is neurological immunopathology?
Take care,
Natalie
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ChristineL
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Posted: Sun Dec 14th, 2008 11:36 |
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Thanks Natalie!
I (accidentally) learned the hard way that I have to not only wear my Noirs all the time, but I have to make sure I'm wearing the right ones at the right time. 
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Hashimoto CFS like symptoms synthroid ph1Nov08 light exp r/t work & kids cover up at home NoIRs
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ChristineL
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Posted: Wed Dec 17th, 2008 14:38 |
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I've been taking 50 mg every 48 hrs for a week now and I'm starting to feel bad all the time again. When I increased to 50 mg I was feeling better at least one day between doses. Is it time to increase to 75 mg or am I having a long herx? Is a week long enough? Not sure what to do...
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Hashimoto CFS like symptoms synthroid ph1Nov08 light exp r/t work & kids cover up at home NoIRs
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Aunt Diana
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Posted: Wed Dec 17th, 2008 21:57 |
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Christine,
Have you read the Phase 1 guidelines? You can find them on the Marshall Protocol website.
It is important that you read these and read the FAQs as well. That way you will be able to answer many of these questions (basic) and save the moderators for the more complicated issues that may arise in the future.
I also found that reading the posts (on the MP site) prepared me for most eventualities that might come along during my time on the MP.
Phase 1 is the "kindergarten" for the rest of the protocol...it is here that you will learn how to handle the IP. Since everyone is so unique you should pay careful attention to how you respond by trying the various options in your "toolkit".
I am not evading answering your question for laziness sake....I am hoping to encourage you to find the answers and how to do that. There may come a time that you will need an answer quickly...knowing where to go for answers is the most important thing you can learn at this stage.
Also, it is such an individual thing....at this point you need to "test the waters" and see how you respond to ramping, etc.
My word of advice is that "caution is the better part of valor". You can always ramp up, it is difficult to ramp down.
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ChristineL
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Posted: Wed Dec 17th, 2008 23:56 |
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| I did read through the guidlines again before posting but all it said was a week or two before increasing. I wasn't able to find more details on this. I'm also confused because if I only spend a week at each dose it seems like I'll be ready for phase 2 before 3 months. (even with some of the suggested experimenting with the mino dosing etc. My doc hasn't treated anyone on the MP before and isn't that familiar with the ins and outs of this stuff.
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Hashimoto CFS like symptoms synthroid ph1Nov08 light exp r/t work & kids cover up at home NoIRs
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ChristineL
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Posted: Wed Dec 17th, 2008 23:56 |
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| I did read through the guidlines again before posting but all it said was a week or two before increasing. I wasn't able to find more details on this. I'm also confused because if I only spend a week at each dose it seems like I'll be ready for phase 2 before 3 months. (even with some of the suggested experimenting with the mino dosing etc. My doc hasn't treated anyone on the MP before and isn't that familiar with the ins and outs of this stuff.
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Hashimoto CFS like symptoms synthroid ph1Nov08 light exp r/t work & kids cover up at home NoIRs
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JoshR
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Posted: Thu Dec 18th, 2008 01:42 |
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| 3 months is an upper bound, there's nothing wrong with getting through phase 1 in less. See: How do I know if I'm ready for phase two?
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Aunt Diana
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Posted: Thu Dec 18th, 2008 22:56 |
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Christine,
In my experience, I found it impossible to ramp as quickly as the guidelines suggest. Your IP responses will pretty much dictate how quickly you can proceed. Most of us have learned through experience that planning ahead is sometimes a futile exercise. (As our herxes dictate the time line more than our best laid plans)
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ChristineL
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Posted: Fri Dec 26th, 2008 10:33 |
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Help? I got a stomach flu from my daughter that started monday (vomiting and diarrhea) and I'm still having a lot a problems with nausea and diarrhea today (Friday). I've been taking Promethazine (which I didn't see on the list of meds not to take) at night for the nausea by it's not helping and immodium for the diarrhea with is also not helping. I've never had trouble getting over a virus before??? Has anyone had difficulty like this before? I will call my doctor when the office opens, although he won't be in.
-Christine
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Hashimoto CFS like symptoms synthroid ph1Nov08 light exp r/t work & kids cover up at home NoIRs
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