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Aussie Barb
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Posted: Tue Sep 12th, 2006 04:45 |
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Sedona: Sarcoidosis: 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. I need to be told to slow it down cause I'm a speedster by nature.
Member in Phase 2
Sep 9th, 2006: I've had some really good days.
- My energy level has been tremendous. I've been taking advantage of this and took two trips to Atlanta, GA. After I walked at least 15 blocks.
My breathing only got labored when I had to course a hill but I braved it, braced myself, and stayed the course. I'd stop and take it easy when I experienced dizziness. The next day I could hardly move cause the muscle in my legs haven't seen that much action in a long time. But I didn't care, I walked 15 blocks which I haven't done in three years. The muscle pain felt good; very much like a good workout at the gym.
-I am really happy and so is my hubby. He kept reminding me to let you guys know how much better I was and all that I was able to do lately. We're both blown aways by my improvement.
I am going to make an appointment with my previous doctor so that he can see my improvements and possibly offer this treatment to his other patients. I have to at least give him the opportunity to see what the MP has done for my health. I am a year past their transplant date and far better than I was when they recommended it.
I will keep you guys posted on the outcome.
Much love and success to you all.
Sedona - ready to start Phase 3. empowered.
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Sedona: Inflam Disease|Neural/Lung Sarc diag via biopsy 9/96|off Mtrex 5/04|off Pred 8/05|off Silver Protein 400ppm 11/05|Cut D:02/14/06| MPh1 2/19/06; 1,25D=60pg/ml:25D=27ng/ml;Ben 40mg/q6hr;2nd week mino 100mg/q48hr
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Aussie Barb
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Posted: Tue Sep 12th, 2006 04:54 |
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jillbc wrote regarding her husband the Fisherman: Sarcoidosis: recovering on MP after recommendation of a lung transplant: Member in Phase 2
Sep 10th, 2006: Very soon my husband 'the fisherman' will have his year's anniversary of the doc's recommendation of a lung transplant too. They did a full pre-transplant work up and told him his lungs were too scarred for a sucessful transplant. And kindly told him to go home and put his affairs in order and make some "tough decisions" about what we would do when he went on the ventilator. He told them "I'm going on the Marshal Protocol, I'm going to get better." That raised an eyebrow or two.
Now his recovery is raising eyebrows. Its been almost a year and he is doing well and getting stronger. Lung herxes are the hardest. We are so pleased another person has been able to forgo that terrible surgery and not-so -promising outcome on the MP.
For those of you considering the MP and those who are just starting, the fisherman wants you to know that he was "on the way out" a year ago and now he is doing extremely well.
Cheers and take care
jill and the fisherman 
see also
previous improvements post
1 year update
TRANSPLANT talk (preMP)
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Fisherman: Dx. Lung & skin sarc 1983, hospitalized with viral pneumonia July'05, Pantaloc 40mg q48h, now off Lasix 40mg OD; Began Olmetec 40mg q6h 10/19; Phase 2,12/26. Mod Ph2 07/02;D's in the 10's. Oxygen prn daytime, 2L at night down from constant10L in Oct.
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Aussie Barb
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Posted: Tue Sep 12th, 2006 04:57 |
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John McDonald: RA: Member in Phase 3: My RA "remission" is more secure now. After 1 year I am very happy with the MP and I look forward to more progress and a full cure ahead.
Sep 11th, 2006: I have been on the MP since mid September last year. I am amazed again, on phase 3, how a trifling amount of antibiotic can have such a strong impact. I may be the only MP patient to start this protocol from what was arguably an enviable state of remission. Road Back AP had substantially given me back my life. Nevertheless I have had profound herxing on the MP and I have since made some nice gains.
I have taken 3 long breaks from herxing this year to accommodate 3 overseas trips. This has slowed my healing but it has also given me a chance to measure my progress and I am pleased. My RA "remission" is more secure now. Before it was unstable and more of a day-to-day thing. Now if I quit all abx I think I would be symptom free for a long time before the microbes gain ascendancy again.
-On the MP I seemed to have cleared up an eye infection that I didn't know I had, and which the Road Back AP didn't seem to touch.
-My GI issues cleared up early this year and my cognitive abilities feel sharper and faster, as though I am again in my thirties.
I started MP from (arguable) remission. My goal has been to herx my way to a full cure, but without ruining the goodwill and cooperation of my employer or family. The MP herxing has impacted both, but so far
-I have been able to manage herxing while working a demanding job and while husbanding and parenting. I have made some choices. The outside of our ranch property looks very bad and I have neglected quite a few handyman duties around the house. Career-wise by now I should have moved on to a better paying and more interesting position, but in my current job I can afford bad days.
My gains over the last year have been fantastic, and now I am definitely looking forward to further gains. A few times I have accidentally taken two Benicar instead of one with zero ill effect. After a year of this I wouldn't be afraid of the Benicar, I am afraid of leaving any of the microbes that gave me RA.
After 1 year I am very happy with the MP and I look forward to more progress and a full cure ahead.
May 2007:
I have had very little arthralgia on these last cycles; I mean barely detectable. I have a ways to go yet on phase-3 but it is getting harder to elicit RA herxing. I am telling friends that I seem to be nearly cured of RA and that I continue with the MP to clean up other bits now, especially the microbes in my brain. Over the weekend at a soccer tournament I watched Briar (10yo) play 3 games and I refereed 4 games without NOIRs. This was a real achievement. I ran hard and kept up with the plays and after all that light exposure I had just a bit of eye irritation which cleared with a dose of Benicar.
Family: our whole family on the MP. asthma RA ADD schleroderma etc.
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John McDonald: RA dx June 2002,Mino only 2-2004 to 8-2005 2004Dec17: 1,25D=38; 25D=22; 2005Nov4: 25D=17; 2006May5: 25D below 7; began phase-1 9/16/05, began phase-2 12/11/05
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Aussie Barb
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Posted: Tue Sep 12th, 2006 08:35 |
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MS patient is in Phase 2 of MP: Listing improvements as sensation returns.
"I have been noticing some very encouraging results since early May.
-I am experiencing increased sensation in my feet
-I notice the texture of carpet in my bedroom.
-I am also more sensitive on the tops of my feet
-I feel like I can feel the insides of my shoes.
-In general it is kind of a tingling sensation, like after a limb has fallen asleep and sensation is returning again.
-This increase in sensitivity has persisted and is now moving up my legs as well - again I'm aware of feeling the insides of my jeans.
-I'm almost more aware of the numbness in my legs - it's like I can "feel" the numbness which is reminiscent of my sensations when I was first experiencing MS symptoms 15 years ago.
But I'm not the only one noticing a change!
My massage therapist sees an increase in muscle mass in my legs and at my last visit she motioned that my muscles are behaving more like muscles should behave
- they stay in place better than they used to as she is working with them.
-And I notice more immediate and dramatic results following a massage treatment."
__________________
This MS patient is in Phase 2 of MP: Listing improvements as sensation returns.
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Aussie Barb
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Posted: Tue Sep 12th, 2006 08:47 |
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CFSgirl: CFS FMS MCS: Typical Fibro lumps on the inside of each leg at about knee level are gone! and more...
Member in Phase 2:
Aug 22nd, 2006: Wanted to report on a "first".
-This Monday, I had 6 hours of "normal" energy, at least as much as I can remember "normal".
-Then I felt "normal" tired, which is still way more energy than my best usual CFS day. I could learn to discipline myself, and hopefully next time this happens, I will have the sense to stop.
-Also, I was talking to one of my healthy friends on the phone, who has known me since 2nd grade and has seen and heard me almost at my worst with this illness, and she told me that I was speaking at a normal speed and using bigger words and sounded like the old me. She said I used to talk at a snails pace and took very long pauses, which I knew. But I hadn't noticed that my speaking speed had improved enough for a healthy person to tell. Maybe one of my CFS friends might notice, because I would be speaking too fast for them to follow, but i didn't realize it was enough of a difference for healthy people to notice. When I'm really crashed though, I think I'm still speaking the slower pace. I still have to search for words sometimes and don't use the level of vocabulary I used to.
ADD: Sep 12th, 2006:
- Cholesterol now down to 198, a total of 101 points down. Yeah! This is what impresses my Doc the most, he can't believe it.
-Typical Fibro lumps that I had on the inside of each leg at about knee level are gone! They've been gone a couple of weeks and I keep checking every day to see if they've come back - no, still gone. To find a pain point in this area, I have to dig around alot and there is a small pain point in there still, but prevously, whole lump hurt, it was about a 2-3 inch long by 1 in wide "lump". Wish I had a picture - probably the only visible symptom I had. I had these lumps since 1986, 3 years before getting sick.
CFSgirl.
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CFSgirl: 1989 CFS/FMS/MCS, Sudden Onset, Disabled 1990. Esoph.Spasms,Spine/Back pain. Symptoms,too many to list.10/14/05 started Ddiet/sun avoid. 10/20/05 D-25 19, D 1,25 49 10/24/05 glasses. Start Benicar 11/05/05 Start Mino 11/18/05 Current Benacar 40 mg Q6h, Mino
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Aussie Barb
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Posted: Tue Sep 12th, 2006 09:08 |
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Linda Jones LYME: Being able to live without pain, being able to think more clearly than I have in ages, being able to see and move without problems, having some muscle endurance, are HUGE improvements for me. More importantly, I feel motivated to do things, because I have energy that I need to find something to do with.
Member in Phase 2: Jul 30th, 2006:
I haven’t posted a progress report in a LONG time. I’ve just been focusing on getting well. But I just wanted to report on something significant that my husband and I realized yesterday.
-I haven’t taken any kind of pain killer in months.
I do have discomfort, and sometimes pain with herxing, but it is insignificant enough that I can just live with it and ignore it for the most part. And it suddenly dawned on me that I no longer have the constant non-stop deep bone pain, day in and day out that I’ve had for years. The pain that I used to have was unbearable unless I took pain killers every day. And at times the pain killers were not enough. So to live relatively pain free like this without pain killersof any kind is a major accomplishment.
-I have much more energy.
We got some three little kittens back in May, and I had enough energy to pour myself into building them an elaborate cat tower, a furniture style wood litter box cover and a special counter that we can put their food up on. It took me weeks to do, but I did it, and did a good job. And I was still able to manage to actively play with the kittens every day, add their daily care needs to my list of to-do things, and cope with the normal day to day things I manage to do to survive. I still have to watch my energy, and I still have to take frequent rests. And some days I still have NO energy for anything other than basic survival, but the fact that I was able to accomplish what I have is significant.
-I’ve also been able to do more cooking from scratch, which has significantly broadened the variety in my diet. I have the energy to cook regular meals every day now, including food for my family, and not just my own specialty diet, which is a huge improvement.
-Nobody else has had to cook for me in months. It’s such a relief to have good cooking skills again and to eat descent cooking. Convenience foods are TERRIBLE! And none of my family members are any kind of cook to speak of.
-I’m about to embark on building a play house for my granddaughter for her birthday several weeks, and I don’t have any doubts that I will be able to accomplish it.
-I can see well enough to have confidence to use power equipment,
-I have good small muscle control with my hands and coordination, and
-I can think through analyzing what steps to take to get to the goal, which is also something I couldn’t do months ago. But more importantly,
-I have the endurance to be able to manage to control the power equipment safely, and to do the sanding and handling heavy pieces of wood, as long as I pace myself.
-This spring I planted a garden for the first time in years. I go out after dark to maintain it and harvest things. But I have managed to keep up with the gardening work required. And I have been LOVING the home grown tomatoes that we have been picking. Store bought tomatoes, even the best quality vine ripened tomatoes taste like cardboard in comparison to home grown tomatoes.
Before I started the MP, I struggled each day just to eat and do limited personal hygiene. I frequently didn’t have the energy to cook meals, and I had to use a lot of no-preparation or limited preparation required kinds of foods if I wanted to be able to eat, unless my family took pity on me. I didn’t have enough small muscle control in my hands, or strength to even eat without difficulty, let alone be able to do anything as demanding as holding and operating wood working power equipment. I was very limited in what I could do. Now I can pretty much do whatever I want, as long as I pace myself, and stay out of the sun and bright lights.
This doesn’t mean I’m well by any means, and I’m still very definitely disabled in a number of ways, though I'm managing to compensate for the deficits. I still clearly have a lot of other things going on that need to improve before I will be anywhere near the state of health I had years ago. I’m still not as active as my other family members. But I can see clear improvement that doesn’t disappear, but has been steadily improving for months now, even WITH the herxing.
January 2008:
I’ve been working around a lot of dust this week, moving some furniture and things around that haven’t been dusted under for years in order to create more space and get rid of a lot of accumulated junk. And so I’ve been having a lot of irritation in my eyes and sinuses from the dust. I took some extra Benicar and extra Benadryl at bedtime for that and that has helped. Amazingly, normally this kind of dust exposure would have induced hives for sure. And I’ve had none. I’ve had to really pace myself to keep from overdoing it, because the furniture moving is more work than I’m used to. But so far I haven’t felt the kind of rebound fatigue that I used to get from doing extra work that would last for days afterwards. Now it’s just a matter of resting for a bit, and then I can start again. Not that I’m going to make a habit of over-doing it, but it’s so nice to finally get some extra work done that’s needed done for ages.
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Linda Jones: Lyme Thyroiditis IBS MVP Fibrocystic Breast Disease PTSD MCS ill 29+ years/SAM-e Claratin Probiotics Psyllium NoIRs Beni comm 11/23/04 Q6h Mino100mg comm 12/22/ Sept04 25D=19 1,25D=62.8 Sept05 25D=7 1,25D=39
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Aussie Barb
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Posted: Wed Sep 13th, 2006 20:56 |
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BARNEY: Sarcoidosis: ATTENTION ATTENTION ATTENTION
Member in Phase 3
DAY 619, 9/12/06, NO ACIDOP, NO PAIN PILLS, EVERYTHING NOT ONLY TOLLERABLE BUT 'OUT OF THIS WORLD' EXCELLENT
Tuesday (yesterday)...I left at 1130am to drive 60miles one way to visit with her...I wore a denim long sleeve shirt, levis, socks/shoes, a sleeveless shirt under denim shirt, my Noirs, my 5" brim hat (no cream or anything on my face) and my black leather gloves. I wore my gloves all the way down because the sun was on the steering wheel (and my hands) but...did not wear the gloves the rest of the way.
We went to 4/5 stores shopping a little after I arrived there...walked thru all them and went out for dinner....after arriving back at her house...I took a 1 hr nap before proceeding home after dark. Did not arrive home until 930pm (60 miles home also). I was in a lot of sunlight yesterday and no reactions. WOW.
That turning point that Trevor talks about...I think I got there....
My eyes see so clearly it is unbelieveable....the colors are absolutely beautiful and the tv and all else is so clear....my head is so clear I can actually think...the best in my entire life....it is WOW....wonderful.
I had no herxes or sun flares...I enjoyed myself without being brain fogged at all and clearly knew what I was doing.
I was and am not any tireder than a normal person would be.
I knew MP worked but MPers I am here to tell you to hang in there, you will not believe how good this turning point feels....absolutely out of this world. I am really feeling like I can make it as a normal human being and really function as one.
The last 30 miles I ran into large rain drops, pea sized hail, water so deep on the road that the car wanted to hydroplane, lightning so bright you could not see the road when it flashed......and thru all this......I felt nothing but peace and slowed down to 35mph and just took my time making it home safely to no electric...wow...
My mind and soul are still rejoicing, I am so overjoyed that I could shout it from the rooftops that MP is the only thing to do.
I will continue current combo and then complete the rest I have not completed yet, knowing that I am going to enjoy the rest of my life.
HANG IN THERE MPers, MP REALLY WORKS AND THE TURNING POINT DOES COME!!!!BARNEY
March 07:
Sugar is the best it has been in months...it is now below 200.
Out about 4 hrs. in and out of the sun. No apparent problems from sun exposure.
Here's to you passing that wonderful MP point. You will just be blown away at how great it feels.
more:
WHAT A WONDERFUL LIFE!!!!!!!!! I believe that was the name of a movie. Well, anyway, it is the way I am feeling about the past 3 months. MP has treated me well. I am able to almost perform like a 'normal' person. Thank you Trevor for all your hard work....it has certainly paid off for me.
I am feeling great...out and about whether it sunshines, is cloudy, or rains...you just cannot imagine how elated I am. I feel like I am floating on cloud 9. just so happy.
more:
What a trip!!! 14 hrs on the bus, mostly at night but part of it in the day time. I tried to sit on the side where the sun would not shine on me when it reached day time. Stayed with another friend and my son drove me home after a week. Had a great time with absolutely no problems with doing MP. It is a great life now. I would do this forever, if I had to.
Wow!!!! I just cannot believe how great I feel.
Hope all of you MPers are proceeding along on MP with great improvements. The first 2 yrs are the hardest.
HANG IN THERE, WE WILL MAKE IT!!!BARNEY
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BARNEY: 64 joint sarc 77 skin sarc 80 lung sarc 81 asthma migranes 95 rkidneyremoved(cyst) diabetic gall b removed 96 total hyst(cysts endom) 01fibro 04 D's(53/25)05(52/22) BENICARQ3HRS1/05, MINO2/05, 2NDANTB4/05-6/05, 3RD ANTB 6/05 CURRENTLY PHASE3 3abxcombo
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Aussie Barb
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Posted: Thu Sep 14th, 2006 23:16 |
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debbie y: Sarcoidosis, Diabetes 1 -insulin pump, celiac sprue, IgA deficient, thyroid, MVP, Dupuytren's contracture. I am a member in phase 2 and doing very well. I have several autoimmune diseases. My doc has been impressed with my progress.
I started avoiding the vitamin d foods and pretty quickly felt better but really felt better when I avoided the sun. I noticed that my rash spots stopped spreading, the ones I had were fainter and and did not progress. And, since I've been on the MP (8 months now), my ACE is normal, blood count normal and I have NOT HAD a spot appear and the ones I did have are so faded away, I am the only one who knows where they were.
I have a Dupuytren's contracture on my index finger. One amazing thing I noticed after my FIRST dose of Phase 2 is that the pain was almost completely gone and my finger which is normally bent, was able to be straightend out completely. My husband and I stared at this finger for almost 20 minutes before we turned the lights off to go to sleep! I could bend and straighten it without any problem. I could not straighten it out at all before. This finger has been like this since last year and before the MP was started. I am now fascinated and may be able to cancel the surgeon's appt. and just give this more time as I have just begun Phase 2. Also, the pain in my finger has decreased alot and is straightening out on its own. This protocol continues to amaze me!
One thing that has been a big change is my blood sugars. I have been having consistent normal readings 95% of the time. This is an unbelievable change. Also, I am NOT having any "rebound" high sugar levels if I do have a Hypoglycemic episode.
The other change since I started Phase 2 is that I have been able to lower my insulin dosage for the first time since my sarc was dx'd in 2004. I am very pleased and excited. After 44 years of diabetes, this is really interesting.
I have always had severe palmar redness with spots on both hands since my 20's. In the middle of both palms I am now having clearing in areas and they are normal colored. no rashes.
Also, my glasses are getting too dark for me so I have had to order the 40% Noirs for indoors.
I am very excited about the blood sugars. I would deduct that the inflammation is lessening.
I would like to hear from other diabetics who are on insulin to see if they have noticed any changes in their blood sugar control.
My Dr. was absolutely surprised with my lab results and so was I. For the first time since my sarcoid was dx'd in Jan 04, my A1C has returned to normal. My thyroid has remained STABLE since the MP and I have dropped 2 doses. My WBC, normal, and for the first time since last June, the ACE is in normal range. Triglycerides, cholesterol, electrolytes, etc all normal. The hemoglobin and hematocrit which had strangely dropped alot last time, has returned to normal levels without intervention. It had to be a herx reaction. I have also been able to lower my insulin dosage by several units. I haven't had results like these for such a long, long time.
I am feeling totally euphoric and blessed right now.
My stamina has definately improved. Continue to do well. No more heart palp. Hanging in there and feeling so much better.
All my best,
debbie y
November 2006:
Saw doc yesterday, my thyroid level remains normal. I have NEVER had a stable thyroid since diagnosed in 97. It has remained stable every since I started the MP and I have dropped several dosages. Even my magnesium is normal, also a first.
December 2006:
The biggest change for me is after being on the MP, I do not have those high "rebounds" after a hypoglycemic event. I haven't had that luxury for years.
March 07:
I had my first bone density scan done since being on the MP and when I got it back, improved was underlined by the dr. My bone density had increased by 3.5%. This is post menopausal, no vitamin D and no bone "building" meds. This is exactly what Dr. M has written about! I also had my D- 25 checked recently and it is 4.
May 08:
I have also noticed that my toenails on both feet are changing. I have had diabetes for 46 years and I have deep ridges in great toes but, the ridges are disappearing and the nails are becoming smoother. I think this is SIGNIFICANT for a long time insulin dependent diabetic.
see also
Debbie Y: My life is important to me and I want to live to be an old woman
debbie y ready for ph 3
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Debbie Y: Ph1=2/2/06 SARC lungs,skin,3/04, D.M.1 -insulin pump, celiac sprue, IgA deficient, thyroid, MVP, 2/06 25D, less than 7, 1,25-29, Wearing NOIRS Beni 40mg q8h, ph2 6/06 Ph3 Nov 06
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Aussie Barb
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Posted: Fri Sep 22nd, 2006 21:55 |
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Gary Member in Phase 3: Eyes: Yesterday afternoon, before taking my abx, I did notice one symptom getting better that really surprised me
Starting about 10 years ago - about age 40 - I started using reading glasses, first as weak as they came, but soon up to +2.50 or +2.75. About 4 years ago I started needing some very mild correction +1.25 for distance. Even things very far away were clearer with the +1.25, and they were essential within a typical sized room. I still needed the +2.50 for reading.
Yesterday when leaving work, I noticed some things in the distance weren't clear. So I took off my glasses, and whoo-hoo!! things were clearer with just my good old eyeball. Currently my eyes alone are only clearer than the glasses for objects over about 50' away... but its a start!.
Gary
Freddie Ash: great eye report 18 months of MP
Testimonials to improved vision with the MP
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Gary: dx Sarc 4/00- lymph biopsy. Neuro, lymph, eyes, fatigue, liver, kidney. Benicar 5/04. Mino 6/04, PH2 8/04, PH3 12/04. Sig herx Few non-herx symptoms except stuffy nose.
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Aussie Barb
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Posted: Tue Sep 26th, 2006 02:15 |
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Ms Dale wrote her story of a true miracle. How do you define a hero?
Sarcoidosis: MP Nov 2002
The years had not been easy.
Three children stood watch over their mum, whose life was slipping away.
A once vibrant and energetic woman, now physically destroyed from a disease called Sarcoidosis, full of challenges to maintain any sense of "normalcy" from a wheelchair and disease ridden body for these young lives. Simple little things in life, had now become a grueling task, leaving her exhausted and her children frightened.
The treatments of many that did NOT work, the disease that played by no rules, having no bounds as to where it attacked next, left them with little hope of a mother being there to witness special moments in their lives as they matured. Few people can understand that kind of bravery unless you actually see it in a child's eyes.
Then...came word of a new treatment for Sarcoidosis, and defying doctor's expectations, the mother and children persevered. The struggles of medical issues in the past, lightened with each phase of this new treatment, and the children's tears were now happy ones as they watched life begin to pour back into their mum!
On September 9, 2006, the mother proudly walked, yes WALKED, her daughter Jennifer down the aisle to be united in marriage.
In December 2006, the mother will witness her daughter Jesyca become a mum herself, as she gives birth to her own daughter, Sophie, who is 'angelic' looking on the Ultra Sound!!
And truly a moment to be treasured, of a wonderful young man and son, Kirk, who took his mothers hand in his, and danced with her at his sister's wedding, leaving not a dry eye in the room. A young man whose childhood recalls no memories of a once vibrant and energetic woman, he is creating his own special memories now...
His smile said it all, the moment of a true miracle, made possible by the hero in their lives, Dr Trevor Marshall and his development of the Marshall Protocol.
Sincerely and Thankfully,
Ms Dale
and children - Jesyca, Jennifer, and Kirk
Ms Dale re her MP Journey
The Many Faces of Recovery pics of Ms Dale, Meg, Belinda, Lowelle
Ms Dale re progress on MP managing Family commitments
How Do You Define a Hero a pdf with pics of Ms Dale. to print.
__________________
Ms Dale: Sarcoidosis: MP Nov 2002
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Aussie Barb
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Posted: Thu Sep 28th, 2006 21:56 |
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shamutooth: re MCS and Insomnia .. This is the point I have been looking for for the last 20 years, and I consider myself fully functional, and am looking forward to functioning at even higher levels.
Sam: Member in Phase 3 wrote:
After taking an abx holiday for a couple of months, and I have changed my antibiotic combination, my MCS,and insomnia are the best yet with no fatigue or any other symptoms. My innate immune system seems to be functioning at a very high level.
I'm working in an office enviroment with lots of cologne and perfume around,W/O HARDLY ANY SYMPTOMS WHATSOVER!!! I'm able to work inside W/O any glasses, and am able to drink coffee again W/O any side effects whatsoever.
This is the point I have been looking for
May 2007:
Amazing how good health gives absolute peace to the soul This spring has been the best one of my life, and I just want to thank Trevor and the entire staff for the miracle that you've given to me. May God bless you all.
Sam
see
previous update
Sam Insomnia
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Sam: MCS CFS IBS insomnia anxiety depression started Doxy July'04, MP Sept. 04; Benicar 40mg 3/day; Phase 2 started 2/2/05; 6/28/05 D results 25D=29, 125D=47; 11/13/05 25D=10 Phase 3.
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Aussie Barb
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Posted: Fri Sep 29th, 2006 15:49 |
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Betsy G wrote of her recent improvements in Phase 3.
I am able to think clearer.
Vocabulary is better. Still much searching for words but not as many instances of the wrong word coming out.
I have an increase in energy
I have a new 'do. I am able to hold a hair dryer again! I have to go for short periods at a time but this is quite an improvement over combing my hair in stages ( a bit at a time).
Muscle weakness continuing to improve as is walking, coming upstairs.
Intestinal difficulties improved.
I rode my horse yesterday. Really rode her for about 30 minutes--walk, trot, a bit of canter. WOW. Totally stopped riding over a year ago and it has been at least 18 months since I have cantered her. WOW. I actually had muscle reponse when I asked for something to move (my body, not the horse). What a difference. I could actually feel her beneath me and I could tell my leg(s) to move and it did. WOW. I cannot believe the difference and it is hard to describe. Before, not only would my body not respond but I couldn't even feel the message going through--if that makes sense. Another way--I couldn't even feel my body (whichever part, leg, stomach, etc.) TRY to move. It is like I never even asked a muscle to move. And yesterday, I asked, I "felt" the brain deal with it and then I felt my leg respond Oh, happy day!!!!!!!
I have seemed so much stronger lately and I have been riding her in my mind for quite some time, I just had to try. I just felt like my body was ready, if that makes sense. This is a giant step forward for me.
Oct 12th, 2006:
Just had a thought. When "counting my blessings" yesterday, out of the blue, I thought back to when I was working (now almost four years ago), and how I felt ill all the time. Since I was dealing with the public, I just thought I was being exposed to every "bug" out there. I always felt like I was "coming down with something" and I would fight back with vit C, Sambucol, etc. I thought I was doing OK, thought I was keeping myself well and on my feet.
So, it was good to recall that I don't have the sore throat, swollen glands, sinus infections, etc., that were so routine then. All good thoughts.
February 2007:
The last couple weeks I have been working on paper--trying to catch up the last 5 years or so! Organizing papers for taxes, organizing financial records, etc. No where near finished but I have a start and I feel good about that. I am able to work on these tasks with a clear mind--hooray! I am also reading financial planning books, etc., and I am able to comprehend what I am reading. These same sources I could not read, understand as recently as a year ago. So, progress has been made.
Physical symptoms: lesions are starting to heal on back, stomach, etc.. One new one. Numbness of hands, feet, lower legs often wakes me at night. Vivid dreaming the last few weeks; very detailed, realistic dreams. Neck, back, shoulder pain is getting better. More physical energy. Legs are stronger!
Betsy
February 2008:
I am getting more active and doing much much more. So far today--shoveled snow at 5 a.m.(keeping in the dark), 3 loads of laundry completed, balanced checkbook, reading MP articles, posting, etc. Last year I might have done one of the above for the entire day. Unbelievable!
April 2008:
About 4 days a week I go out to see my horse. This takes 2-3 hours. I have ridden her twice a week for the last 3 weeks--up from zero a year ago. I use K cream, hat, gloves, NoIRs, etc.
Mood has been good--hopeful--for the last month plus. This is a significant change for me!
All the hours of sorting through 30 years of paper paid off. Our home is organized and I don't feel completely buried in the mess! I take this "clean out" as proof of my improving health especially as it relates to all the neurological symptoms. Thank you MP!!
May 2008:
My lungs went from 2/3 of each lung being scarred to normal lung x-rays. Quite an improvement!!! SOB sxs are rare at this point. I am also not in bed all day. I am using my increased energy to work around my horse. Just brushing, cleaning her or tacking her up were things I could not do at all 3 years ago.
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Betsy: Dec 03 Sarcoidosis by lung biopsy, muscle joint skin 25D-10(Dec07). Nov04 Benicar. Ph1Mar05 Mino,NoIRs, K cream,windows covered. Ph2Jun05. Ph3July06. Wellbutrin Vit E
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Aussie Barb
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Posted: Tue Oct 3rd, 2006 02:32 |
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Lowelle Messner: Sarcoidosis: began MP in June 2003. I am able to live my dream of galloping x-country at The Kentucky Horse Park!
Member in Phase 3.
Hello Betsy G, from another horse person. I just returned from The Kentucky Horse Park where Tess, my horse, and I took a 7th place in the Recognized Beginner Novice Combined Training Event, which was put on by the Keeneland Pony Club. There were 20 horses in our division, so I was very happy with our experience.
I, too, never thought that I would be riding, much less jumping fences, again. It is such a wonderful feeling to communicate to your horse with your legs. I understand just how you felt. I remember riding in my mind, too. My appreciation for life and this second chance to live it is never taken for granted. Without the tireless work done by Dr. Marshall, Meg, Belinda and all of the other moderators, I would not have been able to live my dream of galloping x-country at The Kentucky Horse Park!
Congratulations! The best is yet to come. Lowelle
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Lowelle: Began the MP in June of 2003. Sarc diagnosed from biopsy of lymph nodes. Sarc in liver, spleen, lungs, neuro and lymph. Begin numbers: Vit. D=13; 1,25 D=64. Recent numbers: Vit. D-12; 1,25D=30. Benicar; 100mg-minocylcine-every other day;
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Posted: Tue Oct 3rd, 2006 02:32 |
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Guss Wilkinson Sarcoidosis Psoriasis: wrote: I am about three years on MP. time for an update. now in full training for my 5th Dan Black Belt in Karate.
Member in Phase 3.
Hi All
I can’t remember the exact date that I started the MP, I just know that it was in October 2003 – that means that I am at or about three years in.
Therefore, I think that it is about time for an update.
I exhausted herx on my second time round of Phase Three antibiotics.
I reported last time that I was feeling pretty good – my only symptoms left were a little psoriasis, runny sinuses and a phlegmmy cough. I can now report that I still feel really good, my phlegmmy cough has gone and my sinus flow has reduced from the tap being full on to an occasional drip.
As a result, my tolerance to exercise has increased quite dramatically. I am now in full training for my 5th Dan Black Belt in Karate which should happen in the first couple of months into next year (Helena is taking her 4th Dan). My last grading was just over 7-years ago and I remember that it nearly killed me…the bugs must have been wearing me down then without me knowing – my lack of fitness at the time did surprise me given that I had been training so hard (little did I know!!).
So what does all this mean for me? Well, I came to the realisation the other day that I don’t really give my Sarc too much thought any more. I glance at the MP website occasionally just out of pure habit and it is interesting to note that most questions that are asked these days have been asked before – i.e. not many aha-feelings on my part any more.
Does this mean that I’m done? No, not really – I still have a couple of spots of Psoriasis left and I shall push on until these are completely gone. The Psoriasis is my gauge.
It is spring now in NZ and I am looking forward to having fun with my kids (who are teenagers now) at the beach with some swimming, surfing and barbecues...not that I will be sunbathing to get a tan or anything like that – those days are over for good. I don’t think that I could ever relax again lying in the sun knowing what is going on. If I find that I am reacting negatively to the exposure that I am contemplating then I’ll modify my behaviour again.
We went on a fantastic family holiday a couple of weeks back to the Gold Coast in Australia. The holiday was very successful and my energy levels are very high – my family have nearly forgotten my grumpy, sickly and lethargic cocooning days.
I have a new job which I start in two weeks with another university as a Senior Business Analyst.
One last interesting thing that I have noticed recently is that my tastes seem to have changed. I have found that I am now able to eat foods that I have never liked previously (such as certain cooked vegetables and mushrooms etc). It is quite a delightful discovery and I have no idea if it has anything to do with my newer wellness.
That’s all I have to report – if anything changes I’ll keep you posted.
December 2006:
– still feeling great and full of energy. The herx I am experiencing now is a very mild case of minutely bumpy skin on the right cheek (the face, that is  ). I have occasional mild pain in the lungs which radiates across my back – but it barely gets my attention. Sometimes I notice stiff heels when I wake up which makes me walk as if I have flippers on my feet – again, nothing irritating.
The little psoriasis that I have left is proving stubborn and hasn’t reduced.
I seem to be losing more weight without really changing my eating habits – I am now down to 76 Kgs – but all is good!
My fitness is also improving and there is no hint of that annoying phegmmy cough on exertion.
Off to the beach on Friday, where we plan to spend Christmas and the New Year – we can’t wait to have a good and proper rest.
Cheers
Guss
see also:
Guss Wilkinson: on Clinical trial
Guss psoriasis
Guss Sarcoidosis Update
Guss doing well
Guss Insomnia
Guss exercise questions
Guss My MP experience
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Guss: Dx Sarc May 2002 Stage 2. Estimate Sarc since 1987. Lungs, Joints, Kidneys & GI. Two failed Prednisone courses. (Started MP: Oct 2003 - D25...31ng/ml, 1-25D...76 pg/ml), Phase III since July 2004; Benicar Q8H, BP 100/60. Feeling pretty good!
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Aussie Barb
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Posted: Wed Oct 4th, 2006 00:23 |
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John D Sarcoidosis: wrote: Way to go Guss! Great to read about your progress. I'm just a few months behind you, and can relate similar observations.
Member in Phase 3.
In recent weeks, I've been feeling improved endurance and muscle strength in my legs and elsewhere. My gage is how I feel after 18 holes walking the golf course.
Today, I was comfortable doing chores all afternoon, after spending the morning on the golf course. No need for my after lunch nap anymore! I can get by with less sleep, and do not have much dizziness anymore, but the temps are cooling as we get into fall now, and that makes things a lot easier for me. At times, I even find myself sprinting if I need to make a quick pit stop on the golf course. It has been a long time for that to feel comfortable. I am thinking I need to start some regular aerobic exercise, like jogging or biking, so I am ready for the ski season coming up soon. Things are looking up here too!
Cheers! John Dresser
see also:
JohnD: condition and stamina improved
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John D: Sarc- Lungs dx (biopsy) 1985, pred 3yrs, Started MP 2/04 1,25D=58.1 , 25D=18.1 -phase 2-6/06 phase 3- 9/04, 4/05--D1,25=13 25-D=6, 6/06 starting final phase3 abx combo- and D1,25=31 25-D=11
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Posted: Sun Oct 8th, 2006 02:37 |
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CelticLadee: CF + Headaches, Pericarditis, FM: noting improvements in social situation.
Member in Phase 3
My Sis is visiting for a few days. Lots of visiting & laughing, playing card games, went out together in midday sun. I had K cream on and used my NoIRs so was fine. I've said it before but it is still remarkable how well I do under these circumstances now that the chronic fatigue is almost totally gone. A strong contrast to a year or two ago. Life is getting better. Should would be great if the light intolerance would just go away too! 
Spent the next day & evening with Sis visiting, baking, doing jigsaw puzzle, playing Yahtzee, making beaded bracelets and cooking meals. Noticed at the end of the day my mental alertness was faltering as I know I had overdone the mental exercises required to keep up with her. Although I have vastly improved I am not 100% yet. Probably somewhere between 80-90% however so is most excellent! This was a wonderful test. She was so happy to see how much better I am now. The last time she was able to visit me was over a year ago and I was ready to lay down with fatigue and brain fog after a couple hours of visiting. Now I do not need to lay down at all.
see also
CelticLadee: CF I have great hopes!
CelticLadee: CFS (chronic headaches, ear pressure, teeth pain and brain fog gone)
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CelticLadee: 2001 Shingles/ CF+Headaches. 7/2002=Dx: Pericarditis. 9/2002=Dx: FM. | 8/03/04 BeniQ6H| 8/17/04 Full MP| 01/21/05 PH2| 7/17/06 PH3| magnesium oxide | 25D/1,25D: 7/15/04 (27.9/63.9) 1/13/05 (14/43) 1/23/06(11/21) 5/24/06(6/32) 9/25/06 (8/66)
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Posted: Sun Oct 8th, 2006 02:48 |
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Vicki SA: ME/CFS, Splenectomy: better recovery time after trip away this time.
Member in Phase 2
I have been home on leave this week and recovering after our trip away over the long weekend.
I don’t seem to have been so miserable through the recovery process as I was after the previous trip. I am not sure what the difference was? I haven’t grieved this time. I think there is always difficulty after you go out and pretend you are normal and able to do holiday/social things and then come home and back to the grind of recovery and the reality of your life.
This last trip I had more sun exposure. I wore the K cream and Megan Gale Invisible Zinc and was well covered with dark clothing and hat and NoIRs. I feel I coped quite well and am unsure if I had any extra symptoms because of the sun exposure.
Oh well at least I have been out and about before the hotter weather comes and it will be more difficult for me (assuming that I still don’t cope with the heat). I feel really encouraged that I am able to recover from extra exertion much quicker now! I still seem to need 14 hours/day horizontal time but am able to be more ‘active’ when I am up, not that much of what I do would qualify as anything but a sedentary lifestyle !
Onward and upward ! cheerio Vicki
May 2008:
I am finding now after nearly 2½ years on the MP that I have so much more endurance and I recover from any activity so much quicker. The MP isn't a quick fix but it gets to the heart of the problem.
see also
Vicki SA (ME/CFS) Phase One Alumni summary
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Vicki SA: ME/CFS 2000, Splenectomy 1980, MP Ph2 13/4/06, Mino100mg qod 16/3/06, Benicar 40mg q8hrs 27/12/05, NoIR/sunlight Oct05, D tests Mar 06: 1,25D=24.23, 25D=12, Sept 05: 1,25D=46.9pg/ml & 25D=16.48ng/ml, Ratio 3, Meds: Zoton, Endep, pain meds.
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Aussie Barb
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Posted: Sun Oct 8th, 2006 14:16 |
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Toni D: Sarcoidosis: wrote: re MCS symptoms/allergies: On this family visit my daughter has pointed out some improvements she's noticed within me. I'll call it a Good Report.
She said I seem to have a little more energy and that I'm walking faster.
She purchased the newspaper while we were out and I picked it up and was reading it. She was shocked and asked if not the ink and smell from the paper bothered me anymore. It didn't at that time anyway. Wow. Is the end of MCS symptoms/allergies in the horizon for me? I believe so ...thank God. I'm truly liking the small pieces of the puzzle too!!!
Hope all is well with everyone. Feel good and be blessed ...
Oct, 2006:
I have noticed I no longer have the symptom of floaters or vision spots within my eyes.
I seem to be able to coordinate and organize paperwork and get things in order without much effort now.
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Toni D: sarcoid-1970 glaucoma high BP asthma allergies| Meds-Lasix Xopenex Nevanac Cardizem Probiotic| NoIRs No D/sun | 08/04 1,25D=38 25D=26| 07/06 1,25D=71 25D=9| BeniQ6H 09/27/05| Lasix 20 mg M-W-F| ModPh2 07/26
Since '85, on prednisone. Prednisone-free since March 27, 2006
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Aussie Barb
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Posted: Wed Oct 11th, 2006 04:13 |
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Hopeful Jill: CFS / ChronicLyme: restless legs are getting better... one of my first big signs that my body is healing!!!!!! Looking better! and more ...
Member in Phase 3
I wrote a few posts ago that my restless legs are getting better. It's been several weeks since they have kept me awake. I've had them a couple of times in the last week, but I was able to fall right asleep. This is one of my first big signs that my body is healing!!!!!!
When I went to school last week to see my son's speech, a couple of people remarked that I look better than the last time they saw me!
Good things are ahead of us!!!!!
October 25th, 2006:
: less
ovary pain,
Gerd,
arrhythmia.
: along with
thicker hair
and better sleep overall.
Hopeful
January 2007:
I noticed while reviewing my journal that I haven't had the severe apnea that I used to have awaken me with a need to gasp for air. This symptom has been gone since October 20th. Yahooooooooooooooo!
Jill
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Jill: CFS/ChronicLyme, Babesia, headaches, fatique, aching, chest pains, arrhythmia, sob, paresthesia, GERD, dizziness, depression,years of amox.for tonsils, 12/04 25D=23,1,25D=77, 8/05 25d=21.6,10/05 25d= 8, probiotics, magnesium, phase I 2/05, phase II 3/06, Phase 3.
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Aussie Barb
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Posted: Wed Oct 11th, 2006 04:22 |
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RevDennis: Sarcoidosis: My Dr said if I didn't do something I would not be alive in a year. My wife says I am leaps and bounds ahead of where I was in January when I started. (see first post)
Member in Phase 2
I will retire early tonight because I am listening to a series of books by Clive Cussler. The "Dirk Pitt" books. If you are familiar with these adventure novels, I feel like "Dirk" sometimes. Not brave or handsome or adventurous, just beat up.
My wife and I were talking last night about my progress. Although, I sometimes don't see me getting better, she says I am leaps and bounds ahead of where I was in January when I started.
I also remember my doctor telling me that if I didn't do something I would not be alive in a year. Here I am still kicking and planning for the future.
My wife was very skeptical of the protocol when I started, she is not any more, she is a big supporter. Thanks to all who go ahead of me for your faithfulness through the hard times and to Dr Marshall and all who work with him to make this forum possible.
Have a great night.
RevDennis
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RevDennis: 01 lung biopsy/ lung, lymphnode, muscle & joint sarcoid; O2 24/7 @2 lpm, avoiding D & wearing NOIRS, Benicar 40q6h, 01/01/06, Mino 25mg q48h 1/11/06,mino 50mg q48h 1/28/06, mino 75mg q48h 2/14/06, mino 100mg q48h 2/27/06, Ph2
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