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mcnairvermont
Member
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Posted: Thu Oct 16th, 2008 13:09 |
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| I hope to start the protocol in November. I am a school teacher and was diagnosed with sarc in 2004. I believe I have had sarc since I was young. I haven't missed any work with the disease in 28 years. My question is how long should I figure on missing work. I have told my school it will be until next fall. Is this realistic? Have any other teachers been through the protocol? Is it possible to teach while going through the light sensitive period?
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mcnair vermont
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Kas
Member
| Joined: | Fri Nov 16th, 2007 |
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| Posts: | 43 |
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Offline
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Posted: Thu Oct 16th, 2008 15:30 |
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Hi,
I am a high school teacher and I have not missed a day of work due to the MP. Not everyone is the same, though, and you will have to see how you feel, of course. Some days ( my IP ones) are harder than others, and I come home really tired out, but I have been able to cope well enough. I love my work and find that I feel a lot better being with my students and collegues than being at home focusing on all the aches and pains that can occur.
Wear your Noirs in class if you work in light or under fluorescent lighting. Cover up with clothing and zinc oxide cream, and beg off any outdoor duties. ( I have been lucky, as I have never been given anything more than caf and hall duties). I have lessened my work schedule so as not to overtax my system. I find a 3/4 day more manageable, as I get home a bit earlier and can rest up for a half hour or so, if needed.
Make sure you remain well hydrated and don't go hungry. I keep salty snacks on me to help with my very low BP.
I hope this has been of help to you. Good luck and enjoy your MP ride!
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mcnairvermont
Member
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Posted: Thu Oct 16th, 2008 16:16 |
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| How long have you been on the protocol? I am concerned about the "brain fog" aspect of it. I teach a couple of woodworking classes and am concerned about not picking up on student safety issues if I am in a fog. Are you able to drive during the day to get to and from work okay? I really don't know what I should expect to be able to do and what I shouldn't be able to do. How long has your light sensitivity lasted?
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mcnair vermont
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Kas
Member
| Joined: | Fri Nov 16th, 2007 |
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| Posts: | 43 |
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Posted: Thu Oct 16th, 2008 17:34 |
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I have been on the protocol without a break ( just some abx stopages when necessary) since June 2007.
I only experienced brain fog the first time I went on the protocol back in 2004, but I was not that well educated about things then, my doc and I both panicked and she pulled me from it, thinking it was due to my low BP. If I had stayed the course, I have no doubt that the brain fog IP would have vanished. The second time round, I had very little brain fog- perhaps just a few days.
What I would do in your case, is book about three weeks off to see how things go and assess your ability to go back to work thereafter. You may find you are fine to do so, or you may need a bit longer- only time and experience will tell.
Light sensitivity is also a very individual thing. Right now, I am coping well without Noirs in my house, but still wear them at school under fluorescent lights ( for the most part0 and outdoors. It is also something which comes and goes as you progress, but which should lessen with time, too.
I do drive to and from work and wherever else I need to go. I wear a broad rimmmed hat in the car, gloves, usually darker clothing and my darkest Noirs and I have never had a problem. I drove 2,300 km in a week through Nova Scotia back in early June with my usual precautions and came home to my best bloodwork ever, so clearly I have become less light sensitive of late, but I do know that it can return.
Take things day by day in the beginning and you will soon have a good idea about how much you can or cannot do in the early stages of the MP.
Good luck.
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Julia
Advocate (on leave)
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Posted: Thu Oct 16th, 2008 23:27 |
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Hi McNair, from another schoolteacher,
Everyone's so different it's hard to predict how you'll be, but I continued my part-time teaching without wearing NoIRs indoors, and working under fluorescent lights. I tried to keep natural light out of my room, but couldn't completely.
Because I was part-time, I was able to take a nap when I came home for the first year on the MP; after that I didn't need to so much.
For me brain fog had more to do with remembering children's names and what we'd done last lesson, not about things like safety - I think that becomes second nature and doesn't go away. I had to keep very full notes of every lesson, or I would have had no idea what we'd covered. I also adorned my desk with sticky notes with all the things I had to remember to do!
Another thing that helped was keeping written records of everything I prepared for classes - otherwise I found myself wasting time in, say, making a new worksheet, filing it, forgetting that I'd done it, and re-inventing it the next week!
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Always consult a physician
Essential Info; FAQ; Julia's story
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mcnairvermont
Member
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Posted: Fri Oct 31st, 2008 01:14 |
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I just found a doctor willing to treat me with the protocol. He has treated at least 3 other patients using the protocol. I go in for blood tests Monday and I think I'm ready to start my journey. My first appointment with the doctor is in the 13th. His nurse has assured me the results of the tests should be back by then. I kind of feel like I am diving into a big dark black hole. I am very excited about the possibility of actually being cured from this miserable disease. I ordered my Noir's and am waiting for them to arrive in the mail. Despite all the information on this site, I am still nervous about starting the treatment. I know that no matter what, I need to see this through to the end. It seems that life as I now know it will be changing drastically very soon. I have sarcoidois of the lungs and psoriasis. It's exciting that these two things seem related and the treatment has a chance to cure them both. I also have high blood pressure and high cholesteral. I have a feeling the new diet will eventually take care of the high cholesterol but I'm not sure about the blood pressure. Is it possible the high blood pressure can also be tied to the sarcoidosis? I have also developed a bad cough the past three weeks and am wondering if I should ask my doctor for a flu shot before starting the treatments. My wife and I are both school teachers and we both get exposed what seems like a cesspool of germs from the number of parents that send their kids to school sick. It seems to take months to recover from small things like a cold. I can't imagine how sick I would get with the flu.
I have read all the information I can find about light sensitivity. I still don't know what to expect. Will I get light sensitive as soon as I start taking medicine from the protocol? If not, when will it hit me? How will I know when my light sensitivity gets more tolerable? Will I not be able to see out the 2% Noirs anymore? I have been doing the Vitamin D diet for about 6 weeks. I have lost about twenty pounds in that time without really trying. I assume that my weight will continue to drop eating the foods I've been eating. I read somewhere that it is not reccomended to lose weight while doing the protocol. I don't see where I will have any choice. Is this going to be a problem?
I also have 2 golden retreiver puppies (8 and 16 months old) that I walk 4 miles a day. They are absolutely bonkers when they don't get their daily walk. I read the reccomendation about exercising on the protocol. What level of exercise are they talking about? I don't consider this walk exercise but in reading this site, it seems many would. Will I be able to continue walking the dogs? I have considered trying to live a backwards life when the light sensitivity hits. That means I would be sleeping during the day and stay up all night. That way I could walk the dogs at night. I would love it if anyone out there has experiences to share about getting started on the protocol or suggestions. How's the water?
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mcnair vermont
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natalie17
Advocate
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Posted: Fri Oct 31st, 2008 02:00 |
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Hi McNair,
What is it you;re nervous about? Usually, I find (and as I found myself when starting the protocol) it's the fear of the unknown that nerves us the most before beginning. To help settle this you can keep in mind that there are always volunteer advocates here to point you in teh right reading direction ig you;re unsure of anything.
I found it also helped to read other's phase 1 posts - Phase One Alumni Forum
I also suggest seeing ;
Why is my B/P high? Why does it fluctuate?
- I can tell you I have seen many people's BP return to a 'normal' reading (from both high & low) as they progress through the MP. It can definitely be a result of your th1 disease.
Should I get the flu shot? Vaccines? TB test?
I still don't know what to expect. Will I get light sensitive as soon as I start taking medicine from the protocol? If not, when will it hit me? How will I know when my light sensitivity gets more tolerable? Will I not be able to see out the 2% Noirs anymore
No one knows what to expect - we're all different and there's no way to tell until you start taking the meds. Even then it can fluctuate.
You will know when you're more tolerant to light because the NoIRS will be harder to see through and you will not experience an increase in symptoms from light exposure.
Yes there will probably come a point where you won't be able to see through the 2% NoIRS anymore.
See;
Light sensitivity-basic information
- you can search for any specific light sensitivity info you're looking for there.
Re. Your weight loss;
I'm losing weight. What should I do?
I'm assuming you have seen;
Are there any Guidelines on Exercise & the Marshall Protocol?
4 miles walking a day, in my opinion, is exercise in a healthy person's books let alone someone unwell! I'd suggest trying shorter waks in the evening/dark at first - you don't want to over do it then suffer later. If you can't walk your puppies I'm sure there is someone that would love to help you out. If you can go for walks without experiencing an increase in symptoms then you should be ok - just be careful at the start and always be aware that anything could change at any time. If it helps at all, when I am well enough to go for walks, I plan on going around in circles close by to my hoseu or only going when somebody is home. That way, if clsoe by, I don;t have far to walk ohome if I start to feel IP getting stronger, or I can have someone come and pick me up.
Take care,
Natalie
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I can help you understand the recovery process, but only your physician is licensed to give you medical care.| ABCofMP|My Story
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mcnairvermont
Member
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Posted: Fri Oct 31st, 2008 02:43 |
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Thanks for writing back Natalie! Your right, it is fear of the unknown that has me apprehensive. I have functioned with this disease for many years and I'm hoping I can do this treatment without losing my job. I know in the end that my health is more important than my job, but losing my job would be difficult.
I tried the links you sent me on benicar and monocycline but I was denied access to them. I have looked through the other links and I think they will be very helpfull. It will probably take me a couple of days to try to absorb all the material. I think I have already read alot of it but I have found that my understanding of this stuff gets a little deeper with each read through.
Thanks,
Tom
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mcnair vermont
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natalie17
Advocate
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Posted: Fri Oct 31st, 2008 03:31 |
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Hi Tom,
Sorry about the link - try the Phase One Alumni Forum
(I'll also change the link above).
Happy reading
Natalie
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I can help you understand the recovery process, but only your physician is licensed to give you medical care.| ABCofMP|My Story
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mcnairvermont
Member
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Posted: Fri Nov 14th, 2008 17:11 |
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I started taking Benicar last night at 10 pm. I took my second dose at 6 am this morning and plan on taking my third at 2 pm this afternoon. I haven't had any herxing yet. I'm not clear on the phase one dosing schedule. I have read it several times and I don't see when I start adding in the Minoxacycline. Am I supposed to wait at least a week for the side effects to settle down? What if I don't experience any side effects?
I have another question about the cost of the medicine. My Blue Cross Blue Shield insurance has rejected paying for the Benicar. It cost me 228.00 for a months worth of pills (90). I only live an hour from the Canadian border. Will it be worth my while to try buying the Benicar in Canada? Does anybody else live in the states and buy their medicine in Canada? What will I need to do to be able to buy my presciptions in Canada? I'm hoping that BCBS will eventually pay for some of the medication but 228 a month is definitely stretching my budget to the brink.
Thanks,
Tom
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mcnair vermont
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natalie17
Advocate
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Posted: Sat Nov 15th, 2008 00:41 |
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Hi Tom,.
I have merged your most recent question with your existing thread for continuity.
Suggest you have a read of;
How long should I stay on Benicar? Why don't I feel better? When should I start minocycline?
.. .and discuss with your Doctor.
If you're confused about how the phase 1 guideline/dosing works beyond when to start, I suggest printing it out and going through it with a family member (another point of view always helps) before checking with your Doctor to make sure you've understood it correctly, and to let him know s/he's aware you're beginning phase 1.
For convenience - Phase 1 Document.pdf
Take care and congratulations on beginning your journey .
Natalie
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I can help you understand the recovery process, but only your physician is licensed to give you medical care.| ABCofMP|My Story
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mcnairvermont
Member
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Posted: Sat Nov 15th, 2008 01:43 |
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Thanks Natalie,
The link you sent is much easier for me to understand. Interestingly enough, I have shared the phase 1 dosing schedule with two other people so they can help me interpret it. When it comes to figuring out the medicine, I sense that neither person wants to be wrong and they are extremely noncommital.
I asked my doctor about dosing the medicines and he also referred me to the Phase I guidline. He has other patients doing the MP but it seems I am the only one that is not part of the study. He told me he has his other patients get medical information from the other website. When I told him that I can't post questions on that website, he thought that would prove to be an obstacle.
Again, thank you very much for the information! I am excited to finally start!!
Tom
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mcnair vermont
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Dr Trevor Marshall
Research Team
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Posted: Sat Nov 15th, 2008 02:05 |
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Tom,
Please reassure your physician that I personally have no intention of letting down any MP-supporting physician by failing to help support their patients. He should feel free to call me, anytime.
You might also take him a copy of our 2008 Report, which has a few more details of the "Treatment Optimization Protocol" approach which we are in the process of putting into place.
Trevor
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mcnairvermont
Member
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Posted: Sat Nov 15th, 2008 17:08 |
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Hi Dr. Marshall,
I was pretty shocked to have you send me an email!!
I think my doctor is already aware of how generous you are with your time. He mentioned to me that he talked to you on the telephone last Monday. I think he was surprised that I can't post medical questions like his other patients. He commented on how well the other site has suited their medical questions and concerns. I contacted him about treating me using the MP and I have to travel quite a distance to see him. I'm sure that when he accepted me as a patient, he was under the assumption that everything would be the same. He mentioned that I needed to use the online resources as much as possible because he didn't really have the time to have me contact him 2 or 3 times a week. I understand what he was saying and I have no intention of contacting him unless it is an emergency. You have provided a pretty comprehensive document in the phase 1 treatment and I will follow it to the letter. Believe me, the last thing I am going to do is rock the boat with him. He is the only doctor in my state that is treating patients on the protocol. I think with the links provided by the advocates, I will get through this fine.
I also need to mention how gratefull I am of you figuring this whole thing out and giving us the road map to getting healthy. I'm sure you have heard this from many people. Thank You!!
Tom
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mcnair vermont
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