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Leesa
Member in Phase 3
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Posted: Tue Nov 1st, 2005 12:51 |
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I have been diagnosed with Sarcoidosis for about a year. I am a mom of three kids ages 4 and under. We lead a very active lifestyles; I am training for a half marathon, we go camping once a monthand we also have a pool in our yard in Houston. I get scared when I read about staying out of the sun and not excersizing with all that my family does. I want to get get better but my symptoms are soooo managable now.
Could I take the meds and stay out of the sun to some degree and get better more slowly than others?
Where do I post for this and to ask for emotional support too?
Leesa in Houston-just looking into the mp, now on methotrexate and folic acid, confused.....Last edited on Tue Nov 1st, 2005 16:58 by Leesa
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Sarcoidosis(12-04 biopsy):Uvitus-eyes, Swollen- Parotid Glands, Granulomas-arms, some joint pain & fatigue; Started MP 1-06;Phase 2 03-06 Phase 3 07/06 NO MORE Eye Drops! D test 11-04:1,25D-70 & 25D-46;(9-06)25D-17 (1-07)& 16(2-2008)
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Frans
Member in Phase 2
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Posted: Tue Nov 1st, 2005 13:40 |
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Leesa,
You might want to read this in order to grasp the importance of doing the MP:
- http://www.marshallprotocol.com/forum22/4637.html
The conclusions are harsh, but fair. You have really come to the right place to cure you sarc. Don't give it a chance to get a better hold in your body, act now!
Sincerely, Frans
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Burn-out/nervous breakdown Jan01 125D 48 25D8.48 Ph1Nov06 ModPh2Jan07 Ph2Apr08 Cipramil Seroquel NoIRs lite exp r/t work cover up 25D3.9(Oct07)
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MicB3x
Member
| Joined: | Fri Jan 28th, 2005 |
| Location: | .Canton, Ohio USA |
| Posts: | 107 |
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Posted: Tue Nov 1st, 2005 15:23 |
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Hi Leesa,
I always considered my symptoms managable. Even during the times when my feet and wrists would swell to twice their size and the pain was unbearable I thought I could just manage it. Thats what pain pills and Ice bags are for. Right?
Since 1977 I thought I was managing the illness on my own and I am still very stubborn about it (Having started and stopped the MP twice). The Doctors after all had all told me that once it goes away it never comes back.
In the movie Dante's Peak their is a description that Pierce Bronson uses that puts it into perspective for me. He says that if you drop a frog into boiling water he will jump right out, but if you immerse him in the water and then slowly turn up the heat he will sit there until he boils to death. I know some people have more aggressive cases of Sarc but for me the disease was progressing so slowly that I didn't outwardly see anything wrong. I had slowly adapted to living in pain and constant fatigue and all the other nuances of the disease that this became my normal. I worked and I exercised and did all the things that everyone else was doing but I was spending way to much time in Doctors offices for each new malady. With each new Doctor I would get a new diagnosis. CFS, Fibromyalgia, Psoratic Arthritis etc:
I am sure that I asked each one of them if it could be the Sarc causing me all these problems. Each one said no, that when it goes away it does not come back! Thats what they were taught at the time and some still believe it to this day. So I just went home with a hand full of pills and tried to manage my symptoms. To make a long story short, we are amazing creatures and it is amazing what we can learn to adapt to if given the proper amount of time.
For me the wake up call came in the form of sleeping difficulties. Slowly over the years I was sleeping less and less until finally I was not sleeping at all. I crashed mentally, physically and emotionally, awake sometimes 72 hours at a time. At some points I just wanted to die because I was so exhausted I could not hold my head up but yet I still could not fall asleep. I have been under the care of a Neuro Doc for the last five years and after numerous Medications and stacks of medications I still wake up 99 times every six hours. Thats 1 1/2 times every five minutes. Yet if you read my posts you would see that I still consider myself as managing my symptoms.
It was around the same time that I felt a lymph node under my arm in the chest wall area about the same size of half dollar. It had to come out (Cancer screening) No cancer but I was not surprised to hear that the disease that never went away was back. Now I have many lymph nodes affected and the Benicar has shown that I have some Cardiac inflammation as well.
I've lived a long time with this disease but looking back they were some very uncomfortable years. Yes it is truly amazing what you can learn to live with when the water is slowly turned up to boiling a little at a time. It's kind of like cigerette smoking. Its not a matter of IF, it's a matter of when. Eventually it catches up with you. I wish I would have stayed the course 8 months ago. I would be well on my way to cure at this point. Everything the moderators have told me has been absolutely correct and has helped me personally a great deal.
I have had 30 years to research Sarcoidosis and I can tell you that you would be hard pressed to find anyone that knows more about this disease than Dr. Marshall and his staff. You can trust these people.
I am starting my Phase 1 again in Nov. This time I will succeed. I have to because I have started to rapidly decline. I still think I could manage my symptoms on my own but I have decided that I would rather live and live well instead.
Just one last thing. My 1,25 d has been slowly climbing even though I quit all ingested vitamin D back in Dec 2004. I decided to shelve everything I had learned from this site and resume golfing this summer. My levels of 1,25 d climbed high enough to induce night seizures that lasted for 3 weeks. I normally seize a little at night since the Sarc got worse but nothing like this. They were severe enough that my wife was fearful that I may have a brain lesion or tumor. I had an MRI of the brain done but it came back clean at this time. The seizures ended when I put the Golf clubs away and stayed in a darkened house for several days with my Bolle 100 sunglasses on at all times. This info was provided by this website. It truly is one of those play now pay later things. No one wants to believe the Sun thing. I know I didn't. I tested it many times because I didn't want to believe it was killing me and I paid dearly in health and Insurance CoPays. The MRI was 1000.00 out of pocket. Thats one expensive round of Golf!
A little play time in the sun is not an option. (PS) Could you loan me about 1000.00 in case I get a Golf Jones in the spring?
Good Day and good luck Mickey
Last edited on Tue Nov 1st, 2005 15:55 by MicB3x
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Not MP: Dx 1977 Sarcoidosis NeverTreated/ Classic Sarc Symptoms/ Dec04 25d=20/ 1,25d=40/ Sept06 25d=9, 1,25d=45 Quit Vit.d Dec. 04/Bolle 100's outdoors only
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jrfoutin
Research Team
| Joined: | Tue Aug 9th, 2005 |
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Posted: Tue Nov 1st, 2005 15:25 |
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"I have been diagnosed with Sarcoidosis..."
You don't have to take the word of MP advocates on this board, really. Just look at the Nat'l Institute of Health (NIH) ACCESS Study for your motivation. That science report is totally independent of MP and that research gives you a couple of decades after dx. My insurance company had documentation indicating 8-22 year end points post diagnosis, to decline through chronic impairment toward death.
You might even get lucky and feel OK enough while the disease sets up in additional places in your system. That might offer a few more years of fun in the sun with family until the time the disease makes your decisions for all activities, including when to buy "the box".
Or, you can be proactive with choosing the MP, make some lifestyle changes for a year or so, handle pain (pain not as tough as child birth; emotional challenges that don't come close to writing out instructions for others who must care for your children when you are gone), then you can live to enjoy both your children and grandchildren. Nobody can make you do the MP, either, because this is relatively new and you'd probably have to even help your doctor through some of the MP details.
The MP isn't easy. You do have to be dedicated. It takes time. But, in my narrow Sarcie opinion, it is worth it. At 80 or so days, I'm already getting better and I can feel the difference.Last edited on Tue Nov 1st, 2005 16:13 by jrfoutin
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Sarcoidosis 125D61, MP10/05 ModP2 12/05 Ph2 6/06 Ph3 10/06, NoIRs limited outings covered, 2/08 25D6.2, 10/08 25D6.9
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Nightshade
Member in Phase 2
| Joined: | Mon Jul 4th, 2005 |
| Location: | Berlin, Germany |
| Posts: | 82 |
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Posted: Tue Nov 1st, 2005 16:26 |
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Hello Leesa,
your Symptoms may be easy now, but the disease keeps getting worse slowly.
I have lyme since about 20 years, and reached the point where it is no more bearable. I am still working, but my efficiency is ridiculous. All other activities are at a minimum, near to collapse but not collapsed yet. Without the disease I could work much better, get a better job and have private activities. My disease does not kill like sarc does, but reduces life to mere existence.
If you start now the MP can be much easier for you than for most others, you have propably not so much bacteria yet. But when you do not suffer tortures from the disease your motivation to do an unpleasant cure might be too low.
When my father asked a doc for help to stop smoking, the doc asked why. He said if it is for healt or saving money, it will not work. When he hates smoking itself, finds the stink in the house and the stainen teeth disgusting, then he is ready to stop. Maybe this is the same situation with you.
But if you can do it now, do not wait! Sacrifice sunshine activities (some degrees of avoiding sun is not enough) and change your diet for maximum two years, and gain many decades in return.
Bye,
Nightshade
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MP: Age 33 Borreliosis 83? dx 02, Brain fog, tiredness, depress, arthrit knees hands, Headaches. started Benicar 11.11.05 Mino 27.11.
25D=20; 1,25D=27 NOIRs avoid Light/VitD
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LeAnne
Member in Phase 3
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Posted: Tue Nov 1st, 2005 16:30 |
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I agree. I am not going to focus on the fact that I have three teenagers and feel like I am missing out on life with them. One is in college now and the other two in high school. Two years of the MP is a small price to pay compared to the rest of your life. Your life is more important than a few camping trips. My husband and I love to camp. In fact, we just bought a camper the summer before the diagnosis. With your children being so young, they are still limited in what they can do to have fun. It only takes a few years for the protocol. You will still have many years for you to enjoy life with them. I also bought a pool two summers ago. I just change my schedule for now, and I swim at night. Be glad you received a diagnosis early. Now is the time to take action!!!! 
LeAnne
Last edited on Tue Nov 1st, 2005 16:35 by LeAnne
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Neuro-Sarcoidosis/lungs, spleen, nervous system, skin lesions, 125D66, MP 8/05, Ph1 3/06, Ph3 7/06, NoIRs, low lux home, cover up, 25D9 Sep07
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Leesa
Member in Phase 3
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Posted: Tue Nov 1st, 2005 16:54 |
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Thanks so much for all of your replies and advice so far. I have come a long way just since yesterday. I have come to grips with giving up running and excersize and changing my diet. But, I still am far off on the avoidance of the sun. I read that section but am not sure that I could do it. Would I be able to take my kids to and from school and would I be able to go to the grocery store? Do I have to put blackout blinds on all the wondows in the house and have them shut all day? and for how long? It says many months...6 months or up to 2 years. I still seaching for answers (within myself-can I do it?). I am scared.
Leesa
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Sarcoidosis(12-04 biopsy):Uvitus-eyes, Swollen- Parotid Glands, Granulomas-arms, some joint pain & fatigue; Started MP 1-06;Phase 2 03-06 Phase 3 07/06 NO MORE Eye Drops! D test 11-04:1,25D-70 & 25D-46;(9-06)25D-17 (1-07)& 16(2-2008)
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Leesa
Member in Phase 3
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Posted: Tue Nov 1st, 2005 16:56 |
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| How do I PM? I wanted to know if you'd be willing to call me or me call you to talk, LeAnne?
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Sarcoidosis(12-04 biopsy):Uvitus-eyes, Swollen- Parotid Glands, Granulomas-arms, some joint pain & fatigue; Started MP 1-06;Phase 2 03-06 Phase 3 07/06 NO MORE Eye Drops! D test 11-04:1,25D-70 & 25D-46;(9-06)25D-17 (1-07)& 16(2-2008)
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Nightshade
Member in Phase 2
| Joined: | Mon Jul 4th, 2005 |
| Location: | Berlin, Germany |
| Posts: | 82 |
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Posted: Wed Nov 2nd, 2005 07:50 |
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Hello Leesa,
perhaps you are already missing out a lot. With your powers decreased to 50% you might not feel ill but miss out half of your life. I think I am far below 10%, feeling everything is obviously and seriously out of order. Many others who finished the MP or are close to that got a level of health they did not know before. They have never been at good health, had mistaken moderate disease and manageable symptoms for being healthy.
Dr Marshall says (of course not in my Donald Duck english) the MP does not just bring you back to health, it rockets you to a place where you never have been.
I am not afraid of the restrictions and herx reactions from the MP, I have to avoid sun and many foods, and take lots of pills without it. The only horrors that can scare me are staying ill or getting worse. If you do not live in that hell on earth, do not wait to get there, start the cure soon.
Giving up excercise means not to stay in bed all day, some walking (at night or indoors) will be good.
Blackout blinds in your room are required (black shower courtains are cheap and will do), but leave a bright room where you do not go for the others. Many of us keep going to work, of course covered up and wearing NoIR glasses while traveling. Such low sun exposure may slow down the healing progress, but usually it still works. Heavy sun exposure like camping makes healing impossible.
Do you need to go to stores yourself? Many folks on MP do the indoor housework, to go out is for partner, friends or neighbours. Or look for shops being open after dusk.
Nightshade
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MP: Age 33 Borreliosis 83? dx 02, Brain fog, tiredness, depress, arthrit knees hands, Headaches. started Benicar 11.11.05 Mino 27.11.
25D=20; 1,25D=27 NOIRs avoid Light/VitD
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DNStog
Moderator
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Posted: Wed Nov 2nd, 2005 10:26 |
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Leesa,
A new kitchen and garden room complete with skylights had just been added to our home when I read about the Marshall Protocol...add to that a husband whose health was finally improving, elderly parents who are starting to have medical problems, and a daughter returning home after graduating from college. Eight years earlier I was diagnosed with Sarc that would probably go away...it didn't. Five short years later, I developed Uveitis which can cause blindness and a lump in my left lung. Add this to erratic sleep patterns, painful lumps in the soles of my feet and back of my arms, lack of energy, loss of strength, excruciating pain in both legs etc. My initial hesitancy for starting the Marshall Protocol was not being able to enjoy the new addition with my family.
Shortly before starting the MP, I realized that I would probably not be able to help plan my daughter's future wedding. I further realized that I could be blind and in a wheelchair, if I was around at all, for the most important event of her life. The previous eighteen months, I was too ill to go watch her cheer at her college basketball games...very upsetting for me...it was the first time in 20 years I had ever missed one of her dance, gymnastic or cheerleading performances. I'm now 2/3 through with the MP having started it this past December and enjoying each time that I realize another symptom is no longer problematic. The only regret I have is that Dr. Marshall didn't discover this medical protocol earlier.
I purchased the white/ivory vinyl Redi-Shade temporary window shades online very inexpensively. They are very easy to install...have an adhesive strip that attaches to the window frame and are cut to size with scissors or exacto knife. The skylights have shades professionaly installed and because they still emitted too much light, my daughter slid paper Redi-Shades inbetween the glass and installed shades which has worked nicely.
You will get plenty of emotional support from the wonderful people you will encounter on this board comprised of staff members, medical professionals and patients.
The most important thing you can do for your children, your husband and yourself is to get well. The only cure for Sarcoidosis is the Marshall Protocol and as Dr. Marshall once told a patient concerned about avoiding the sun..."right now, it's the only game in town.".
Regards, Donna
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Sarcoidosis/skin, joints, lungs, nerves, Raynaud's, uveitis, hypothyroid, sinus, wt. gain, Peradontal disease, GERD-hiatal hernia, breast ca 11/06, 25D7, Synthroid, Lexapro, eye vits, Milk Thistle, Quercetin, Rx glacier, cover up, 05/09 25D5, 125D11
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Lottie
Board Staff
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Posted: Wed Nov 2nd, 2005 10:26 |
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Leesa,
I'm so glad that you found this site. I can definitely understand that you are scared, and probably still confused. It's a lot to take in, especially when you don't really feel very sick right now. I'm glad to see that so many folks on the MP letting you know how they've been affected by the MP.
You asked…
"Could I take the meds and stay out of the sun to some degree and get better more slowly than others?"
The answer to that is… no, you can't. It only takes about fifteen minutes of exposure of the forearm for a healthy person to make all the vitamin D that they need. And, patients with Sarcoidosis (or other Th1 diseases) are unable to regulate the production of vitamin D, and you will probably recognize many of the symptoms here at this site, Hypervitaminosis-D Symptoms (Hypervitaminosis-D refers to an excess of the vitamin 1,25 D)
As you read more, you will understand that the 1,25D that being exposed to the sun will cause to increase, has the same sort of effect as steroids do, and will limit your body's ability to kill the cell wall deficient (CWD) bacteria that are causing your illness. Once you have been able to reduce the 1,25D, which you will have to do to be able to kill the bacteria, you will realize that the sun makes you feel much worse.
PROTECTING YOUR EYES
THE EFFECT OF SUNLIGHT/DAYLIGHT AND BRIGHT LIGHTS
AVOIDING SUNLIGHT and BRIGHT LIGHTS
INCIDENT RADIATION TUTORIAL
TESTIMONIALS TO THE NEED TO AVOID LIGHT
You should try to get some help with getting your children to and from school. It is very important that you not be out in the sun any more than absolutely necessary. Yes, you should use blackout curtains on your windows, and keep them closed during the day. Even if there is a tree shading the windows, or they're facing north.
You also need to avoid vitamin D from food and supplements. That includes natural sources, such as egg yolks, fish, fish oil and fortified dairy products. READ the labels! They're adding it to many foods… including some brands of orange juice and bread. The reason for that is that the body and the cell wall deficient (CWD) bacteria will use the 25D as "fuel" for creating 1,25D.
THE IMPORTANCE OF AVOIDING INGESTED VITAMIN D
FOODS TO AVOID and FOODS SAFE TO EAT
VITAMIN D TUTORIAL
You are also going to need to stop the methotrexate, and folic acid…
Should I stop taking any of my medications?
When someone is feeling "pretty good" and doing a lot of physical activities, it can be hard to realize just how sick you are. I would guess that you are quite a bit younger than I am, at age 57. And, being told that while on the MP, you can't go camping, and run in marathons sounds a bit harsh… now. But, if you don't kill the bacteria now, and continue along as though nothing was wrong, there will probably come a time when you won't have a choice about whether or not you go camping or run marathons. You won't be physically able to. You won't have the energy, or possibly be able to breathe well enough.
Even the medications that they give that treat the symptoms won't help after a while. My heart inflammation became worse while I was on Prednisone. That was what brought me to SarcInfo.com, and the Marshall Protocol.
That is also one of the "tricky" aspects of Sarcoidosis. You have to keep in mind that the symptoms don't show up until after the cell wall deficient (CWD) bacteria have caused damage to an organ. So by the time you are aware of a problem, there is damage.
A simple blood test for D-metabolites will help to determine the amount of inflammation that you have going on, and how much herxheimer you may expect.
D METABOLITES TESTS
You should then get an actual copy, and post the actual numbers from the test results here for analysis. Don't accept the term "normal", as even what are considered normal may indeed indicate Th1 inflammation. What to include in your preliminary test result reports.
The Marshall Protocol -- simple explanations
The following forums are required reading before you begin the Marshall Protocol:
ESSENTIAL INFO ABOUT THE MP
Marshall Protocol FAQs
And, this may help you with your doctor...
SUGGESTIONS TO GET YOUR DOCTOR ON BOARD WITH THE MP
I hope that you will continue to post, ask questions, and read as much as you can. The more you know the easier it will all be for you.
We all want you to watch those children, and their children grow up, and be able to keep up with them! I know you do too.
As you can see, there are a lot of people here to help you get through this, and get well! 
Lottie
PS In case you haven't figured it out yet. Click on the name of the person you want to send a Private Message (PM) to, and pick the second choice on the list that appears.
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Dx- Sarc 1999 Cardiac, Neuro, Joints, Myalgia, Skin, SOB, Fatigue (Apr 04-1,25 D 48, 25D 17) (May 05-1,25D 35, 25D < 5) Pred x5yrs-now off! 5/19/04 beg Benicar 10/11 beg Mino, 1/24/05 mod P2, 2/2/06 P2, 1/6/07 P3 - Worked as RN until back injury
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Foundation Staff
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Posted: Wed Nov 2nd, 2005 13:35 |
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Hi Leesa,
Welcome to MP.com. You've gotten some excellent advice from around the world. Aren't our members great?!
As the mother of 3 preschool children you have certain duties just as important as the breadwinner in a family. These duties may occasionally call for you to leave home during daylight hours. Many of us have managed to progress on the MP and continue working either out of necessity or desire. Please see:
How will the MP affect my life? Can I continue to work?
The level of 'cheating' with exposure to sunlights and bright lights that you can get away with varies with the individual. Ideally, a person would avoid sunlight and bright lights 100% of the time but we know that for most people that is impossible. Exposure to sunlight after you've established the Benicar blockade will feel different than now. With the level of 1,25-D reduced, the body is more sensitive to fluctuations in the level caused by sunlight or the Herxheimer reactions. Our body craves homeostasis so even small rapid rises in 1,25-D can cause neurological symptoms such as photosensitivity and fatigue as other hormone levels change in response. It's like a domino effect which is illustrated in this:
HORMONAL CHART
If the sunlight exposure isn't excessive enough to maintain a high 1,25-D continuously the bacteria will still be killed and that will be evidenced by the Herxheimer reaction which you will learn to recognize. If the 'sun flare' symptoms become intolerable (and they probably won't if you are careful), you will need to find creative ways to reduce your sunlight exposure. Our repeated warnings about sunlight exposure may seem excessive but we have learned that many people are not careful enough if we don't stress this point.
Your children are at an age where you are in control of what they do and where they go so that is an advantage. Share your new knowledge about sarcoidosis and your fears for your health with your husband so he can support you.
The most extreme measures to avoid sunlight are usually only needed for a year or so. The change in lifestyle does become second nature after awhile, especially when you experience for yourself the effect that the sun has on your symptoms. You will know in a few weeks of starting the MP that something profound is happening. It should provide you with the incentive to persist until you get that first amazing symptom relief. Then nothing will stop you from continuing on the MP until your sarcoidosis is truly gone.
Best,
Meg
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jrfoutin
Research Team
| Joined: | Tue Aug 9th, 2005 |
| Location: | Oregon USA |
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Posted: Wed Nov 2nd, 2005 20:45 |
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How do I PM?
Good question, but easy after sign-in. From identity information at left of posts on this board, click name of person you want to PM. Choose "Send a Private Message" from popup menu. A dialog box entitled "Write a New Message" appears, with "To:" field populated with name of intended recipient. The rest is similar to "Post Reply" for a public thread.
PS: Hope you are not overwhelmed. I have to take a son to school and I just keep gear next to keys that I can throw on quick (hat, scarf, outdoor NoIRs and gloves). Some places in my house stay dark and some are designated for light.
Little preschool grandchildren that live with me right now sit and work on their activities close to directional low lights pointed away from me--well away from my area-- but great for them (light diminishes at distance, lux meters may be helpful as you set up centers for activity).
Get the little ones their own pair of sunglasses and hats so they can dress up when you do! It will help them get used to the changes, and they can remember this chapter of life as being fun. Take a nap when they do to help you heal. A Mom's light and love are always better than the sun, any time.
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Sarcoidosis 125D61, MP10/05 ModP2 12/05 Ph2 6/06 Ph3 10/06, NoIRs limited outings covered, 2/08 25D6.2, 10/08 25D6.9
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clancy 03
Guests visiting Phase 1/2/3
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Posted: Sat Jan 21st, 2006 14:16 |
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Donna-My husband Scott will be starting MP today! and we have blackened the kitchen windows w/black plastic for now. the LR I got room blackening drape liners from Walmart! which work w/what's up already. but in the kitchen and foyer window--we have had nothing on them. I am a sun lover-so this is going to be SO SO hard for me, but I have Wellbutrin, hope that gets me through. I hate the plastic- Can you tell me where online you bought the vinyl Redi-shades? a website name?...I'd appreicate it. Thank you. Lynne
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Scott CFS 93/neuro lyme diagnosed 11/05/Noirs 12/05 MP started 1/21/06 Day 28 stopped for 2 days/BeniQ6H/ mino25 2/1/06, Mino 50mg Q48H/motrin tyl for pain/Lunesta 3mg Q24h
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Aunt Diana
Moderator
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Posted: Sat Jan 21st, 2006 16:35 |
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Hi Leesa,
Please listen to what the people are telling you. The sooner you address the problem the quicker it will resolve.
These illnesses are very slow and stealthy in their progression....you barely realize it is happening ....iit feels like aging, but it is NOT aging....you get sicker by the year. All of a sudden it feels like you are ninety and you are only 45.
In 1984 I started my own business which took incredible stamina and ability, looking back at it....within two years we were grossing over 2 million dollars and I had 16 employees. Two years later I was bitten by a tick, and gradually became unable to work at all.. within two years I could barely walk couldn't stay awake and couldn't fall asleep, and would have periods of dementia in which I could barely talk. And it kept getting worse. So how strong and capable you are has nothing to do with how sick you may become. If I had not had my own business and a good staff I don't know what would have happened to me....I would have become destitute.
I was fortunate to finaly find a doctor who treated me with antibiotics, which at least killed many of the bugs and seemed to keep things a little under control....but ev erytime I stopped the antibiotics I would start to get sick again. Always gradually....just like aging. I went on like this for 17 years, gradually getting weaker and weaker and reaching a point that I just wished I would die. I used to wish for a disease that other people knew something about...like cancer...because at least peole would understand what it was that I was going through.
When I discovered the MP I practically danced for joy because it sounds like it makes sense to me and I believe I can cure this awful illness. The light thing sounds terrible at first and seems like it will be just awful....but you will start to realize how much better you are feeling you will avoid light at all cost because you feel better.
One more note...I am also an artist....a watercolor painter and oil painter....light has always been my fascination...trying to capture it....if I can go through this any body can. It simpy takes determination to get better.
I find I will put on my noirs and peek through the windows just to see the beauty of the day....but you will not catch me out there in the daylight because of the way it makes me feel. And I know that this will someday pass and I will be able to enjoy the light again.
I have been on the protocol for two months now and am already seeing symptoms disappear....I wish the MP had been there 16 years ago....I would be living a normal life now.
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Lyme 1987, neuro cardio fatigue achiness brain fog depression, anxiety. Pacemaker, D.1,25 32; D <5; 12/07 <6, hydrocodone, lorazapam, benedryl, zantac, colase, Noirs, cover-up or avoid sun, house <30lux. Feb 08 Phase 3. 6/08 D <4, D1,25
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Aussie Barb
Member in Phase 3
| Joined: | Thu Jul 22nd, 2004 |
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Posted: Sat Jan 21st, 2006 18:35 |
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Scott and Lynne
see AVOIDING SUNLIGHT and BRIGHT LIGHTS How and why to protect skin and eyes while on the MP
has all the information.. there is one post with info on redishades and etc..
all best, Barb ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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Leesa
Member in Phase 3
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Posted: Sun Jan 22nd, 2006 21:25 |
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Aunt Diana, thanks for the great post, I think it should have been addressed to Lynne and Scott and I have already stred the Protocol.
Lynne, I got my ready shades at Linens N Things!
Leesa
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Sarcoidosis(12-04 biopsy):Uvitus-eyes, Swollen- Parotid Glands, Granulomas-arms, some joint pain & fatigue; Started MP 1-06;Phase 2 03-06 Phase 3 07/06 NO MORE Eye Drops! D test 11-04:1,25D-70 & 25D-46;(9-06)25D-17 (1-07)& 16(2-2008)
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clancy 03
Guests visiting Phase 1/2/3
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Posted: Mon Jan 23rd, 2006 01:53 |
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Yes-all thank you for advise/info. All the windows are done-nicely. except the little kitchen one- still the black plastic. for now.
I have to remind you: I am not the sick one, so I'm on the other side of this awful thing. Which is not as hard as being sick, but hard just the same. my 3 yr old and I love daddy and are playing the "cave" game w/daddy in the house. But I HATE it. I love the sun, funny that's why we moved to NC from WNY. for me and my sun loving. We've been here 5 yrs--just long enough to "really" make Scott sick. We've been around the block w/Dr's and treatments- and Scott's into researching, questioning everything etc..so when we found MP, we KNEW it was the "real deal" and that's why I'm hanging in...I truly believe a few yrs from now, this will all be a "nightmare" just remembered a month or 2 during a yr.! and I work for a cruise company---and most cruises are not to dark places. Ha.
Leesa--funny you answered as well, I saw your story when we 1st logged on, and I've been watching to see how your doing--I was scared you weren't going to start ...good for you! Hard to be stuck in the house w/the little ones and not playing outside w/them --but so worth it, years from now when your at all their Baseball and soccer games! Hang in there. Lynne
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Scott CFS 93/neuro lyme diagnosed 11/05/Noirs 12/05 MP started 1/21/06 Day 28 stopped for 2 days/BeniQ6H/ mino25 2/1/06, Mino 50mg Q48H/motrin tyl for pain/Lunesta 3mg Q24h
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Leesa
Member in Phase 3
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Posted: Mon Jan 23rd, 2006 02:41 |
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Lynne, thanks for keeping up with me and the well wishes. I am now posting under my progress report at http://www.marshallprotocol.com/forum20/5278.html
We seem to have a lot in common, small kids, love the sun, active and we are about the same age.....lets keep up with each other, I will PM you.
Hang in there!
Leesa
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Sarcoidosis(12-04 biopsy):Uvitus-eyes, Swollen- Parotid Glands, Granulomas-arms, some joint pain & fatigue; Started MP 1-06;Phase 2 03-06 Phase 3 07/06 NO MORE Eye Drops! D test 11-04:1,25D-70 & 25D-46;(9-06)25D-17 (1-07)& 16(2-2008)
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