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Sedona
Member in Phase 3
| Joined: | Sat Feb 11th, 2006 |
| Location: | Alabama USA |
| Posts: | 153 |
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Posted: Sun Dec 3rd, 2006 19:59 |
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Saw my doctor November 20th. Took a spirometer test, blood count and the 25,D. He wanted to shoot an x-ray but I asked him to justify it and he couldn't. I just didn't see how it would do any good at this point.
The 25,d came back at '13'. I was floored and really happy. So by all accounts I am ready to start Phase III. I created my calendar so that I can keep up with the newly added drug.
I am finally starting to get some sleep. I am up until 1:00 am but I sleep until 11am - not so bad. I have been extremely diligent about not going outside unless I really have to get some groceries or run an errand. Very rare.
I admit that I do violate the diet plan. I don't care about the dairy that I can give up easily but meat and sugar are my weaknesses. I am doing better these days. Understanding this disease by reading the MP links I realize that it is integral to stay clear of sun and foods that feed the bacteria(s) which will eventually end my life. Hell, that's the bottom line. Still, believe it or not I eat. I know you MPers understand what I mean. I really have to try hard cause my whole life I've lived, drank, and eaten wholeheartedly.
My spirometer test showed significant lung damage but I can't worry about that. According to everything I've read about this disease it does me no good to get stuck on the damage the disease has so far caused - I just need to follow the MP so that my immune system can spot the weakened bacteria(s) and eliminate it so I can be healthy again.
It only took ten years for this disease to leave me with only 30 percent lung capacity. Only now am I really starting to understand that my lungs are tied up in a battle against infection and that the infection has taken up residence in a large part of my lung space making it difficult for me to enjoy life like I used to. I read and read about this disease at the links the MP provides in an effort to understand what I am fighting against. I feel much more in control of my healing process because I am being provided the information with which to understand and all the misinformation is being dispelled with real information. I am able to speak with my doctor intelligently about what is happening to me and what I need to do and not do. I also have enough knowledge now to know when it is not useful to perform certain tests and can explain why to my doctor who stands in front of me now with this really interesting look on his face as he fights to deliver a reason to argue his case for which he is at a loss to find.
Thank you Dr. Marshall you have empowered me.
And as a result of my empowering experience with my doctor this past week I will keep on reading and reading until I am useful when it comes to helping others understand. When I learn that someone is suffering from any one of the ailments MPers are fighting I proudly pass on the MP website link and just tell them about my experience and emplore them to go out there and read and find out if perhaps they should entertain the idea that this is right for them. But we all know the saying "you can take a horse to water but you can't make them drink." Still, people do find their way eventually so telling them provides a link to that moment when "Eureka" they remember the conversation they had and they remember that link and drink when they are ready to.
I keep drinking and I keep seeing the results of drinking and following this protocol and I am hopeful and not worrying like I used to about my future but really happy about how much better I feel today after less than a year. I tried so many other medicines and they only left me with the probability of a transplant that wouldn't have worked because the bacteria would have just eaten up the new lung tissue not to mention the already beaten immune system trying to be convinced to accept the new lung. Please, that was definitely no solution at all.
Without the MP site I wouldn't be able to conceive of that never mind put it into words. Now I know and so I am empowered. Yes sir-ree bob, I am empowered. 
Moderator add: see also Sedona I am a year past their transplant date and far better than I was when they recommended it. What I luv about the MP site is the support.
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Sedona: Neural/Lung Sarc/ biopsy 9/96| Feb06 avoid light comm Ph1| 1,25D=60 25D=27 Nov06| Ph2 05/06| Ph3 11/06 |4/9/08 25,D=7 1,25D=54| homebound low lux NoIRs| mucinex cont. oxygen|
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sunflower
Guest
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Posted: Sun Dec 3rd, 2006 23:10 |
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hi sedona,
what a great update ! i'm so glad you are coming along so well on the protocol, and congrats on your new 25 d number....mine is the same as yours right now. your attitude is so right...focusing on your future health rather than dwelling on previous damage. before the MP, dr marshall had plenty of lung scarring and fibrosis, was given only months to live, and look at him now....he's like the "energizer bunny".
i can really relate to the diet weakness  ...sugar is my nemesis, and always has been. i personally don't think meat should be a real problem, though, if you try to stick to the leaner cuts. i eat meat most every day and still have had good success with lowering my 25 d (was down to 10 before i started getting so much light this last summer)...i think many MPers eat low-carb with plenty of meat, cheese and veggies. well, keep up the good work and God bless you.........sun
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lyme,fibro,candida,allergies,gerd,osteopenia/ pain,fatigue,dizzy,memoryloss20+yrs/ celexa,vicodin,cal-mag/beni 40mg q6h 11-05/phase 3,8-06/1,25d=34 25d=36,18,17,10,13,5,7
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wytnez
Member Advocate
| Joined: | Mon Nov 29th, 2004 |
| Location: | Texas USA |
| Posts: | 614 |
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Posted: Sun Dec 3rd, 2006 23:46 |
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Sedona,
It is so good to see you standing your ground and concentrating on how good you feel. The PFTs will improve with time. Don't worry. Just keep on keepin on. The body has an amazing way of healing once the bacteria are killed. Like Sun said, Trevor had scarring and fibrosis and he just got a clean bill of health not to long ago.
I had a problem giving up the sweets also. My favorite is M & M's. My boss would keep jars of them. When I quit eating them I lost 17 lbs. I haven't had any since. Now I am working on getting rid of the diet soda. I am going to stick to water and tea. I love my diet 7up though. That is what I take my benicar with as well as all other meds. It is sweetened with splenda but I want to push more h20.
You are doing good girl. Hang in there.
Saj
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sarc lymph nodes. ph1 1/05,125D 33,25D 10,ph2 5/05,ph3 12/05,125D 21, 25D less than 7
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Sedona
Member in Phase 3
| Joined: | Sat Feb 11th, 2006 |
| Location: | Alabama USA |
| Posts: | 153 |
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Posted: Tue Aug 26th, 2008 09:32 |
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To a Fellow Sarcie
Ahhh getting better is quite an experience isn't it. I remember when I first started and boy I thought I was a zombie it hurt so bad . I had no idea that I was that sick inside. I had tried so many other things and they only made me feel and eventually get worse to the point of near death.
Having a caretaker (family, husband, freinds) is so very important. That is my husband. He has seen me through this since 2000. There are a lot of ways to get comfortable as you go through the tough times. Get ready to do nothing because you just won't be able to. You'll need to stop and rest so that your body can use its reserve (what is left) to kill the bacteria between the dosages. Our immune systems have been inundated for so long so energy and strength is what we need to gain and that takes time and patience. Boy did I have so little of that left when I started the MP. It took the Moderators and the members to get me through the tough times and even now I still have tough times. I started in 2006 of Feb and I am just now feeling like I am getting stronger. I still have to use oxygen and I have to take the Benicar q4hrs to keep the symptoms tolerable but I am vital and happy about my recovery process.
I retired from my job because I couldn't do it anymore. I couldn't do anything anymore. I just didn't have the breath or stamina. Sometimes I can't believe how much better I feel and how much better my health is since I started the MP. There are times still, that I get frustrated when I experience symptoms. I am working on keeping my perspective despite the ins and outs of healing. Sometimes I feel pessimistic but I've learned to listen to my body again and being positive is extremely important while healing. From what I read you sound like a champ to me. You got it in you I can feel it through your trials and errors and attempts. Not many people have the guts to take charge of their health and follow a protocol as exacting as this one while feeling like a train wreck. At least that's how I felt in the beginning. I began to learn that I was much stronger than I realized and had a great deal more resilience than I ever dreamed. "Phase I" seemed like bootcamp and I felt like a peon too. Lately, I am feeling like a Sergeant and looking forward to making captain. I believe in what I see and I see that I have gotten better.
It is vital to get and have a good pillcutter. You can buy one at the pharmacy. The one that works for me is called the Apex Ultra Pill Splitter; blue and clear plastic (Rite Aide). You will be cutting pills for the duration of your healing process unless your pharmacists can split the pills for you into gel caps. For me the Mino got easy to split with the pill splitter; you'll get the hang of it. Below is a website with an example of the one I bought and others. You can always practice on aspirins. I did. pillsplitter
Besides the oxygen I also use albuterol or ProAir HFA. It doesn't have any corticosteroids so it's safe. I also learned from an MP member that Mucinex could help me expextorate more easily. It's also called quaifenesin. I get the 600 mg 12 hour extended release. Wally Mart has it. I was trying to save money and started using Eucalyptus oil rubs but the MP reminded me that Mucinex also has a little bit of inflammation reduction ability as well. I started taking it again last week when I was ready to change my name to Wheezy . Within a day I was able to breath much easier. I was not nearly as breathless as I was before. I also went back to using the oxygen concentrator while I sleep which I also stopped doing. The above items help me get over the hump time and time again. Sometimes after reporting my symtoms the MP has to remind me to use them. Oh and my NOIRs too. LOL for a while I just loved trying my immune systems patience. Oh well never thought I'd be incognito in my home for health reasons.
I get ahead of myself at times. But after I explain what is happening out here (MP) I get put back on track again and I begin to feel ok again and confident about my healing process. Sometimes I get anxious and off track when I get to feeling really good, after all I've been sick a long time and I want to start doing things NOW. But well, this is one of those times in life where I have to exercise patience.
I am really glad that I did not have the transplant. I am especially glad I looked harder for something better than the normal mode of treatement and found the MP. It does take courage and a whole lot of faith and belief in ones self to stay on course. With the help of the MP Moderators and members you'll get the rhythm of the MP and then you'll develop a balance. It's a wonderfully simple and blessed opportunity to dig deep into ones reserves and work with others towards healing.
I garden. I will send you some pics - flowers from a fellow sarcie.
I am glad that you are here. Welcome. 
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Sedona: Neural/Lung Sarc/ biopsy 9/96| Feb06 avoid light comm Ph1| 1,25D=60 25D=27 Nov06| Ph2 05/06| Ph3 11/06 |4/9/08 25,D=7 1,25D=54| homebound low lux NoIRs| mucinex cont. oxygen|
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Sedona
Member in Phase 3
| Joined: | Sat Feb 11th, 2006 |
| Location: | Alabama USA |
| Posts: | 153 |
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Posted: Fri Aug 29th, 2008 01:54 |
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MP meds: Benicar q4hr; Phase 3
Palliative meds: Albuterol; Oxygen; Mucinex; a lot of water
Light exposure: 1 hours
Symptoms:
right lung burns in the problem area (upper lobe near the sternum) but no bleeding
The pain began four hours after I took my abx combo. I stayed quiet inside while this pain grew in intensity. The pain was so severe I was afraid to cough due to apprehension about coughing up blood. But it was ok and only dime size mucouse came up
It's the same graduating pain from the lung to the ear. Although my ear was throbbing I didn't feel like there were fluids running down my ear canal which is the worst kind of ear involvement.
coughing up old mucous and dry heaves afterwards
sensitivy to light increased
sleep pattern changed; unable to go to bed before 4:00am
Appetite still great;
Feeling strong and muscle mass continues to increase
Mood still very good and upbeat
feet swell resolved with lymphatic massage
Comments: From my perspective I am experiencing bacterial die off. I just wish I was in a lab where I could take some tests. A whole week would be awesome. I also wish I have the power to see inside. I wonder what is going on in there [lungs] especially the right lung. The left is quiet and has been save for the bottom lobe which suffers from pleural damage. The next day when I took benicar only the pain increased in intensity and severity; I was hunched over. I sat still and stayed quiet while listening to my body knowing that healing is going on in there for sure. Staying still and quiet and not worrying allowed me to understand this and not cause any chemical releases that could prohibit my immune system from functioning like fear. I decided to take a valium to keep my cool and relax my muscles. I inhaled the albuterol before bed and did the oxygen. The next morning the symptoms were less severe. My chest didn't feel like fire anymore and I was able to breath without feeling like there were flames inside my chest. The location where the pain is strong felt less strained. So I made it through the episode. Much shorter in duration than past experiences. I think I was also much better at handling it as I now understand what is happening to me; what is causing this episode to occur; and what the outcome has a tendency to be. Also the causation obviously was the bacterias reaction another dosage of the combination of drugs altogether. This is a milestone for me. I am really starting to get a feel for the healing process and the after effects of the medication and its affect upon the bacteria.
Thanks
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Sedona: Neural/Lung Sarc/ biopsy 9/96| Feb06 avoid light comm Ph1| 1,25D=60 25D=27 Nov06| Ph2 05/06| Ph3 11/06 |4/9/08 25,D=7 1,25D=54| homebound low lux NoIRs| mucinex cont. oxygen|
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