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Aussie Barb
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Posted: Wed Oct 11th, 2006 16:52 |
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Lowelle Messner: I would not be doing this without the MP.
Thank you. -Lowelle
see also
Lowelle Messner re horse riding
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Lowelle: Lymph node biopsy '03. Liver, spleen, lungs, neuro & lymph. '03- Vit. D=13; 1,25 D=64. Recent numbers: Vit. D-12; 1,25D=30. Benicar; Phase3
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Aussie Barb
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Posted: Sun Oct 15th, 2006 20:39 |
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TrishOBrien TH1 w/symptoms CFS & lupus: Overall, I am so much improved.
New Member in Phase 2
Hi,
I had some time to think about my progress on Phase I.
-I haven't had canker sores, swollen lymph nodes or sore throat in so long, I can't remember.
-Most of this week, I was able to go up and down stairs with almost no pain in my knees and hips.
-Brain fog is so much better. Still getting periodic headaches, but they are responding to ibuprofen fairly easily.
-I am able to manage my kids with patience.
-I have only a little bit of pain here and there in hands and arms and periferal neuropathy hasn't happened in months.
-I've been able to stop taking inderal for blood pressure
-and I think that change has helped my mood significantly.
November, 2006
-my hair is growing back so much that I have to have it colored more often. That's a price I don't feel bad about paying. 
____________________
Trish OBrien: dx TH1 w/symptoms CFS & lupus. Joint pain, migraine, rest-legs, fatigue., chills w/o fever, canker sores, swollen glands in neck, jaw and underarms, thinning hair, numbness hands, feet and face. 5/06-vit d,125=67, d25=11; Oct06 d25=6| Phase 2 Oct06
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Aussie Barb
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Posted: Sun Oct 15th, 2006 21:21 |
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robyno: Mum of Matt 14 yrs 40 kg: Rickettsia + Lyme symptoms: 1 year, 33 days since begin Benicar: Holiday at the beach. Back to School.
Phase 2 commenced 13 Jul 06
see also Matts Record of Improvements in the first year.
We had a wonderful 9-day holiday at our beach-house. Matt handled the car trip really well - we stopped 3 times each way but not for as long as I remember having to a year ago. We went out for dinner twice (Matt just loves the wood-fired pizzas at our favourite Tarthra restaurant) and Matt giggled his way through most of our outings. As a family it is wonderful to have our trips down the coast re-instated. It is very relaxing for all of us.
The wet suit, gloves, booties and hat worked a treat and Matt went swimming twice once his herx days had finished. they didn't stay in the water for very long. The invisible zinc cream seemed to work very well as per usual and didn't wash off easily in the water (Matt had to really work at it in the shower afterwards to get it off).
It is interesting that Matt can go outside now at dusk, about 10 min before it gets really dark. He doesn't even wear his glasses then - he just looks all around and comments how beautiful the world is. I really think this illness has changed him forever - there's no way he'll take anything for granted again!
Next week he has two days of school and two days of tutoring all lined up. It will be a big week. He is still doing lots of exercise, even on his herx days.
Oct 22nd, 2006
At school on Friday afternoon he actually joined a couple of his classes rather than spend all his time in Special Ed. I don't think Matt could believe that he was actually sitting in a class room!
As if that wasn't enough, yesterday he went to see a movie with his friend for the first time in about two years! - we can now add movies to the list of things Matt now has back.
Oct 29th, 2006
Matt is able to watch TV now and play the playstation so his list of things to do when he is tired has increased considerably.
He still loves his audio books but doesn't have to spend so much time in his room. He'll also manage some exercise but doesn't push himself quite so hard.
Matt loved his afternoon at school on Friday and will go again Monday afternoon.
His background headache (his BIG symptom) is almost 50% better than it used to be. Symptoms improving steadily each cycle.
November 5th 2006:
Matt can do so many exercises: sit-ups and stretches - they don't seem to jolt his head and he can handle it. He occasionally gets a bit dizzy if he over-does the exercises but he won't be talked out of them. I guess we have to trust his instincts.
A few weeks ago that we measured his height and he had grown 4 cm since the end of July. His weight is still about 40 kg though, so it's like he is being stretched! I think the exercises are his attempt to put on a bit of muscle....
Last night was another first - we went for a walk around the block all together! We took the shortest block but Matt managed really well and every block we walk is up hill on the way back. Those exercises are paying off! I'm sure we will be doing a lot of walks in the dark as the summer progresses.
Matt is planning three afternoons at school this week and wants to take his lunch to eat with his mates. It will be quite a big week.
He is determined to get to school as much as possible.
He is working pretty well on his assignments at home and is enjoying being able to do them, especially on the computer.
He has started giving his brother advice on how to make his powerpoint presentations more interesting - eg wouldn't he like Matt to make his words go up in flames or wouldn't he like to fire a cannon in the top righthand corner? He's beginning to sound more like the Mattie of old.......!
November 19th, 2006:
I think Trevor and Liz agreed that Matt doesn't look sick. Gee, he used to, but not any more. He is just going from strength to strength
- he doesn't time his TV watching or computer any more - he just uses them when he wants to. It is no longer an issue.
-He can now lie down flat for minutes at a time, which is another improvement we have only just noticed.
-And he is so darn cheerful.
-He still has to time his trips to school to fit in with his "immunopathology" (I hate that word!) and can only last a couple of classes, but that will improve quickly from here.
For the first time in his life he is not looking forward to the summer holidays - he would much rather be going to school!
Dec 3rd, 2006
- Dr measured Matt's height 155 cm, a couple of cm more than the doctor had measured him at the end of July.
Matt continues to improve with every antibiotic cycle.
He is very busy these days
He has a couple of assignments to hand in this week
and a whole lot of Christmas bon-bons he has been planning to make
School or no school, we are going to have a great summer this year, even if it just means going to the movies or watching a movie at home as a family. It's been quite some time since we have been able to do things like that. And of course we can go to the beach now that Matt has his wet suit and invisible zinc cream. So roll on the holidays!
Regards, Robyn
see also Matt Happy New Year 2007
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Mum of Matt 14 yrs 40 kg, Rickettsia+Lyme sympt,paracetamol,Lactobac, Noirs Aug05, avoid light&D, Beni 13Sep05 20mg Q6H; 16Jun05:1,25D=22, 25D=27,12Sep05:1,25D=30,25D=21, 7Oct05:1,25D=27, 25D=24; 7Dec05:25D=12.4; 5Apr06:25D=10; 18Aug06:25D=8.8 Ph1: 8Oct05; Phase 2. Phase 3 20Nov06:
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Aussie Barb
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Posted: Mon Oct 16th, 2006 22:57 |
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Grant wrote: Sarcoid: summary of Symptoms: Current Conditions and Improvements:
Member in Phase 3
Sleep distruptions --- Hugely improved throughout MP
I now fall asleep easily and experience resorative sleep.
Even better now on phase 3.
Nasal blockage --- nasal breathing was about 20% flow before MP;
Improved immediately with vitD avoidance; during phase 1
Flow improved to 60-70% on phase 1; now improved to 90%!
Headaches --- Pre MP was experiencing debilitating headaches several times/month. Headaches resolved immediately on Phase 1.
Have not had any headaches for over 2 years!
Brain Fog / Anxiety / Temper flareups --- I am 90% free of these conditions.
Joint pains --- pre- MP I was sure I would be in line for knee replacement surgery within 5 years.
Now with three levels and plenty of stairs - no problem!
I do deep knee bends as required - no pain.
Left shoulder -- completely 'frozen' by inflammation upon starting MP phase 2.
Now gradually resolving - can now reach up to scratch my head again :-)
Restless Legs -- pre MP used to get very uncomfortable in the evenings -
Now 90% resolved.
Muscle achiness and 'malaise' - pre MP I was referring to myself as 'The 100 Year Old Man' -
Now this is 95% resolved. At some point the continual 'noise' of achiness in my muscles just stopped.
This new-found calmness in joints and muscles has aided the quality of sleep tremendously. Now, I can easily roll over and go back to sleep! I love this!
Heart and Lungs -- I should also mention that a right bundle branch block (RBBB) originally led to a diagnosis of Sarcoid in the lungs (confirmed by biopsy). My RBBB proves to be stable since then (1986) and my lungs are fully recovered
November 2006:
- the good news is that with the MP I turned a gradual downward spiral into a slow steady climb towards good health.
Patience, perseverence, and learning the medications, with Doc's help and monitoring, is what I consider to be the key to successfully using the MP. This takes a lot more effort than the kind of medicine we've grown used to (take these pills and be better in a week)
Thanks, Grant
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Grant: Sarcoid dx 1986 in lungs; coincidental RBBB; MP since 2003/4 w Valsarten and stops and starts| now Phase 3 w Benicar Q8H; 25D 27 nmol; 1,25D 70 pmol;
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Aussie Barb
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Posted: Mon Oct 23rd, 2006 21:38 |
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hrts4me wrote: thank you Benicar! I haven't had to take ONE nitroglycerine SL tabs since restarting the Benicar!
Even with a good size dose of Verapamil daily and nitroglycerine, pre-MP, I was experiencing cardiac symptoms and events. Once I started the Benicar---they stopped. I havent had to pop subling. nitroglycerine tabs---since starting! (Prior to starting the Benicar, I was taking 3 nitro tabs during an event, and then sometimes that wasn't enough).
-Still no nausea---thank you Benicar!
-Cervical spine still hurts but tolerable w/ benicar and pain meds.
-Feel good mood wise, sleep better.
-UTI gone.
-Cardiac symptoms---gone.
-IBS much better.
-I am a happy camper. Gawd, I love Benicar.
see also Hrts4me: re cardiac symptoms.
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Hrts: LYME COPD Arterioscl FM/CFS Hypertens Steatosis HiChol 4.2cm Kidney Mass Bosniak Stones Hyper-CaPhUria Angina Neg.T-Waves Short-PR Interval SOB RadNeurop BiPolarI (1/05)25D-14 1,25D-13 Nitroglyc Albuterol 425mgVerapamil Xanax Lortab Phenagren Aspir Blood Thin. had MP break.
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Aussie Barb
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Posted: Thu Oct 26th, 2006 01:44 |
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Rico wrote: improvements to Raynaud's problems, and legs, and I have noticed that I'm not waking up at night like I used to, to have to urinate.
IMPROVEMENT TO REPORT:
-For a few weeks now, I've been noticing that my Raynaud's-type problems have diminished to the point of having (almost) completely vanished!
-I'm no longer as cold in the extremeties (fingers and toes) as I used to be!
-I often bike to work. It's been in the 30's Farenheit in the last couple of weeks or so in the mornings when I bike in so I wear the same gloves I have in past years. When the temperature used to be in the 40's before and I had the same gloves on, my fingers would be ice-cold - so would my toes. Now, in the 30's, my fingers and toes are just fine with the same gloves and shoes.
-I also find I don't need to wear slippers in the house anymore.
-I went winter camping a couple of times with a friend over the last few years and my toes would always be ice-cold while he had no problem. Now I know why. Fascinating! Thanks to Dr Marshall, the MP, the staff on this site and the great doctor treating me!
Another thing I have noticed is that I'm not waking up at night like I used to to have to urinate. For the last couple (or more) of years, lack of sleep has been a problem because of waking up in the middle of almost every night to have to urinate. And I'm drinking more liquids in the evening now, including coffee which I didn't before!
My legs are still doing great since they got better back in early September! No longer the constant soreness I used to have. Went for a long bike ride and my legs didn't bother me at all. Just incredible.
July 08:
-My depression, anxiety and anger levels are better than pre-MP, that's for sure!
-I've also been sleeping better over the last 2-3 months
-I'm not waking up every night to have to urinate like I was doing for many months prior.
-I also don't have the constant eye fatigue and brain fog that I was having.
-I just feel generally more confident.
I have to add that I'm really happy I started the MP as early as I did (i.e., before I got really ill). I've had it pretty easy compared to most other people on the MP. I've had no difficulties at all with light exposure - at least none that I'm aware of (perhaps my eye fatigue and brain fog were related but it was never bad enough - perhaps it was immunopathology as they have gotten better). Anyway, I definitely think everyone should start as soon as possible and not wait. I really feel sorry for people who are on their own, really ill and struggling through the MP and having to work. Things are looking up!
September 08:
My sciatica has vanished, thankfully.
___________________
Rico: No diagnosis/some symptoms; wife with Sarc on MP; Olm 40mg q6h| avoid D| 1,25D=63 25D=32 (May 2006) 1,25D=44; 25D=10(Dec 2006)PhaseI(May06) PhaseII(Aug06) PhaseIII(Aug07)
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Aussie Barb
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Posted: Sun Oct 29th, 2006 14:43 |
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ShrnHml CFS: In the last 10 days I have noticed that my knees operate like well-oiled machines.
Member in Phase 2
I previously thought my knees were just getting old. Now, it feels great to stoop down to pet the dog or get something from the bottom of a cabinet.
December 2006:
....the last few years I have managed to send Christmas cards, but it was touch and go as to whether I could get them out in time. This year I mailed them with time to spare!
I felt well enough to tackle some jobs.. There was energy left over to bathe and “do” my hair.
January 2007:
The last few days have been super. I stopped all abx while waiting for a new scrip. I have started feeling good right away. I feel like a race horse coming out of the gate.
On Tuesday I did errands twice.......morning and afternoon……..with rests in between.
Wednesday was an at-home day spent mostly phoning to make appointments………….MP doc, optometrist, dog grooming, rug cleaning pick-up…………. and searching for a part for a ’93 car. This may not sound unusual until you know that previously I had hardly been able to make ONE phone call. It was just too much effort. Appointments have been dreaded for fear I could not keep them. Now I have a secure feeling of being able to keep all the appts I made yesterday.
July 2007: A note from an independent observer…..
On our trip west last month Phil and I stopped in St Louis and had lunch with Sharon. I met Sharon at the LAX conference in 2006. But I could tell that it was an effort for her to carry on a conversation, an indication of how much fatique she must have been experiencing. Last month when we had lunch---what a difference! She was animated and vibrant and seemed full of energy. It was a wonderful thing to see. Carol
see previous:
ShrnHml / Sharon Vast Improvements
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Sharon: CFS/MCS/EBV/MVP/TMJ/PCOS 28 yrs. Neuro-cognitive deficit, endocrine imblance, muscle weakness. START DATES: 11/04 D-avoid & Noirs, 3/05 Benicar, 4/13 mino25mgQ0D. D-tests 10/05 25=44/125=62; 3/06 25=7/125=22. Other meds: Effexor 50mgQ24H. ModPh2
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Aussie Barb
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Posted: Fri Nov 3rd, 2006 04:54 |
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DrVikki : Lyme with co-infection. - making progress: going out in the world for dinners, brunches, lunches, a wedding and reception. energy to socialize.
I have to say this vacation was an 8-9 out of 10, probably even felt a little better than my trip in September. I can tell that there's been a little progress even in the month in between.
Travelled to Georgia. After 6 days in a cabin in northern Georgia, went to Atlanta for a wedding and to see other family members. Went out for dinners, brunches, lunches, a wedding and reception. I have to say I cried at the wedding and reception, because I couldn't believe that I was really out in the world and participating in family events again. Going through the worst of my symptoms in phase 1 and 2, this seemed like such a far off possibility. I feel like I kept looking around like a little kid in wonder and gratitude. I have to say the loud music at the reception did me in a little, but still enjoyed and even danced with my husband.
This vacation showed me how far I've come since starting the MP - I had energy to be SO interested in other people and to laugh, to play games like Scrabble (I even trounced the other 3 players when last year the tiles looked like greek to me), to visit, to socialize. I did have a lot of moments of being tired, But this trip was also a VERY positive affirmation of how far I've come, and that my health will continue to get better.
Thanks for letting me share my excitement.
Take care,
Vikki
ADD: My husband says he has noticed a big improvement in my stamina. He says I'm doing more and being more calm about it. I can tell when I start doing things very obsessively or in a hyper state, that I am herxing. I am very excited about the possibility of losing the obsessiveness completely when I have completed the MP, and that it is not just me being a hyper person. I like the calmer feeling.
see also
DrVikki: great gall bladder test results
DrVikki social / cognitive improvements
DrVikki: thrilled with the MP
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Vikki: Lyme co-infec diag Oct04/ 16yrs back neck pain diges headaches fatigue tachycard tinnitis| Nov04 D1,25=65 D25=26 Sep05 1,25=18 D25=7 Dec05 D1,25=37, D25=8 Apr06 1,25=31 D25=7| light avoid NOIRS Jul05| PH2 11/7/05| Beni20mg Q6H/ PH3 6/8/06
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Aussie Barb
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Posted: Sun Nov 5th, 2006 05:33 |
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Carole: PWC 50+ yrs| 20+ CFS FM Pituitary Thyroid IBS Cardiac OA Migraines +ANA Osteoporosis 2/04 Mediastinoscopy ~Sarc Story - Progress Continues!
August 2006:
The brownish "age" spots on my stomach seem to be fading.
The all-over inflammatory "feeling" is gone most of the time!
Physical and cognitive abilities are the best ever!
Muscle strength and endurance are normalizing!
The achievements and wellness gains on the MP are remarkable!
THANK YOU! 
September 2006:
I took a "mountain climbing" vacation, am returning to a more "normal" state of life, and have significantly increased my involvement in philanthropic activities.
Yes, we walked and hiked around 10,000 ft. daily. With not exercising while on the MP, except for walking our dog, I fared very well. Since I was not "physically fit" as in prior times, I was assuming I would be sore from the exertion. To my surprise, I only had very minimal muscle soreness that went away quickly. Even after a fall, I was hardly sore. I believe the Benicar works in wondrous ways for almost anything!
I look forward to soon "being back" to the site and helping others in their journey to wellness. As one's health unfolds to a higher level, taking time to "smell the roses" is a sweet retreat!
October 2006:
Nuclear Cardiac Imaging in October (at rest and with exercise) revealed no abnormalities or defects.
I am elated to report that the impressions from the recent scan are all normal. My recent, prolonged symptoms must have been immunopathologically-related, thus the cardiac inflammation appears to be resolving!
This abx combo has again presented various responses multi-systemically;
however, another positive marker to share is that I can now bend my little "trigger" finger with no problem. My new issue is the middle finger on the same hand, but I feel it will follow the course and eventually resolve as well.
Heartfelt appreciation is expressed to Trevor and to the Board for their dedication, support, and pursuits for all of us! Trevor's recent AAEM presentation was excellent, and the clinicians' receptiveness was very encouraging.
Best wishes to all! . . . Carole
see also:
Carole: DEXA scan definitely reveals that the MP is working toward suppressing my bone resorption!
Carole: MY MP Story
Carole Living Proof of MP
Carole: Edema resolved and Muscle strength and tone return.
Carole: celebrating my most recent test and CT scan results
Carole: History and Improvements...
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Carole: PWC 50+ yrs| 20+ CFS FM Pituitary Thyroid IBS Cardiac OA Migraines +ANA Osteoporosis 2/04 Mediastinoscopy ~Sarc Story |1/04 1/06: 125D=85,34; 25D=41,14| ACE=68,43|
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Aussie Barb
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Posted: Mon Nov 6th, 2006 08:03 |
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CFSgirl wrote: Some exciting changes have happened in the last month or two.
Member in Phase 2
- Dentist told me my gums are in excellent shape. before were in just good shape, and small pockets were being watched.
-I was also told that my "teeth bones", I guess meaning the roots and jaw bone looked like that of a 19 year old girl. Yeah! Now if other things will start looking that good!
-I went to get my hair cut today, has been 6-9 months since last one, and instead of the usual comments that my hair is very dry and unhealthy, and they always tell me to quit using a blow dryer (when I haven't used one in decades), and today, I was told I had very healthy hair.
First time I was ever told that in my life.
-It also looks like I have more hair. It's still fine, but I have more of it, and I thought i had been losing hair since on the MP.
CFSgirl
see also:
CFSGirl -fibro lumps gone
CFSGirl: CFS/FMS/MCS Noting Improvements
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CFSgirl: 1989 CFS/FMS/MCS, Sudden, Dis. 1990. Esoph. Spasms Spine/ Back pain. Symps, too many to list 10/14/05 Ddiet/sun avoid. 10/20/05 D-25 19, D 1,25 49 10/24/05 NOIRs Start Benacar 11/05/05, Mino 11/18/05 Current Benacar 40 mg Q6h, Mino, Ph2 May06
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Aussie Barb
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Posted: Wed Nov 8th, 2006 13:06 |
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Mirek wrote: I'm able to work full time, travel, eat anything I like and be outdoors..
Member in Phase 3:
Perth, Australia
Hi Trevor,
Would be great to meet you finally in Perth after 4 years on MP?
Thanks to you my health is exceptional. I don't seem to be spending much time on the MP website these days, as I'm able to work full time, travel, eat anything I like and be outdoors (though forever conscious of the sun. Wearing a hat is part of daily routine). As for the Sarc, as far as I can tell free of it. No more herx felt.
Cheers
Mirek
see also:
Mirek: general well being (physical and emotional)
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Mirek: Sarc Oct01: 09/03 1,25D=55;25D=20/ 12/03 1,25D=60,25D=27/ 02/04 1,25D=50;25D=32/ 09/04 , 1,25D=55;25D=14, CRP1.8mg/L (0-8.0) 9/05, ACE:66U/L new range (8-52)9/05, 25D:20nmol/L 09/05. 1,25:37pmol/L Full Benicar. Feeling Great!
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Posted: Fri Nov 10th, 2006 03:37 |
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Improved PFTs
I have new spirometry scores, which compare to my old scores as follows for 2001, 2003, 2004 and 2006.
I started on the MP in 09/2002, so the first score was during diagnosis, and more than a year pre-MP.
03/22/2001 ______ 8/26/2003 ______ 08/31/2004 _______11/06/2006
FVC_2.99 liters________2.93 liters_________2.97 liters _____3.113 liters
___89% of predicted __85% of predicted__87% of predicted___92% of predicted
FEV1_2.21 liters________2.2 liters_________2.39 liters__________2.56
__80% of predicted__79% of predicted __86% of predicted __ 94% of predicted
FVC/FEV1 _74% _____82% _________81% _______103%
Reports of energy level improvement with the MP
Belinda memory and concentration problems and depression
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Aussie Barb
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Posted: Fri Nov 10th, 2006 03:49 |
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Claudia wrote: I am so happy to know that I am succeeding in getting my D levels down whilst getting on with my life.
Member in Phase 3
WHAT I HAVE DONE WHILE de-toxing my body of the Dreaded D
Since I started my MP journey this year, so far I have accomplished the following activities, all the while dressing like some sort of gothic/witch/bag-lady/freak and avoiding the D-filled foods:
- completed a 6 month technical college course in Travel & Tourism
- suffered through a southern hemisphere summer
- travelled from Australia to California and Florida USA, spent 2 months there (it was SUMMER again!)
- returned to Australia in time for spring... summer on the way again! argh!
 3 summers in a row
- sold house, packed up and moved out
- travelled regularly - for business, shopping, school, to visit children in distant cities and next up...
- travelling from Queensland to Tasmania for a working holiday (Tassie will be more bearable weather for me this summer)
So, you see folks, it can all be done, if you are diligent in dress and diet and for me anyway, the K-cream / Zinc-cream seem to work well protecting my un-covered skin (hands and face) from incidental light. Perhaps I am not so sensitive as others, thank goodness, but I've proven to myself that I can continue my "life" while on the MP.
More soon. I'm going out to celebrate! Claudia
March 2007:
Looking back to see what's better since I began MP a year ago. My diet certainly is! My gums and sinuses seem to be completely healthy, as opposed to pre-MP. My bladder problem only arises as a "herx"; I hardly ever notice it anymore. My eyes aren't irritated anymore except when I get too much light.
more:
I also have Hashimotos. I've been on the MP for a year and my thyroid antibodies numbers are falling steadily although I still need thyroxine. I expect to get over it completely eventually... But what surprised me, little by little, as I have been on the MP is all the other assorted health problems I've had over the years which have improved or gone completely away. These things were not even in my mind when I started out on the MP!
I had chronic sinus problems - "allergies" and constant infections - for years. But since the first few months on the MP my sinuses are completely fine.
My gums, which used to bleed, are also completely healthy now. Chronic bowel problems, gone! ... I have seen so much change in my body in a year.
If I added up all the money I have spent on supplements in the past 25 years, it would easily pay for my whole MP treatment, I am sure, and I will be getting well in a much shorter time.
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Claudia: Dx Hashimotos Autoimmune Thyroiditis; arthritis; eye irritation; history of CFS (1988-92); D-levels: 18Feb06 25D=44 1,25D=43.3; June06 25D=38; Nov06 25D=30.4; Daily Thyroxine 50mg; NoIRs| MP Phase 1 begun 23Mar_06 / Phase 2 begun July 10 2006 Phase 3 begun Nov 4 2006
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Aussie Barb
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Posted: Sat Nov 11th, 2006 03:07 |
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RevDennis: Sarcoidosis: Note from my Dr visit. - improvements
Mod Phase 2
I went to my MP Dr today. It is a 6 hour round trip and I am beat. I started this morning at 6 am and took my 40mg of benicar and then every 2 hours took 20mg of benicar. I drove the whole trip.
-I do not feel near as bad as I expected. Normally if I am in the car for 30 minutes I am just totaled. So it worked.
Great news. Normally walking from the Dr's lobby to the exam room puts me to huffing and puffing. Still does but one change.
The nurse takes my O2 sats when I get back there. Normally when she puts the reader on me It reads that my sats are in the mid to low 70's and only rises to the mid 89's while I sit there catching my breath. It has normally taken 20 minutes at 2 lpm of O2 with me sitting and not moving or talking for it to rise to 92%.
-Today was different. The nurse put the monitor on me and it read 88 and within a couple of minutes it was at 93%. Hallelujah. That is a major improvement to me and I didn't really think that this combo was doing much to my lungs.
-I have also lost 10 pounds and my blood pressure looks great. All good news.
Have a great evening.
see also:
RevDennis: My Dr said if I didn't do something I would not be alive in a year. ______________________
RevDennis: 01lung 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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Aussie Barb
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Posted: Thu Nov 16th, 2006 02:25 |
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edj2001: Gene: Sarcoidosis: more improvements
Member in Phase 3
Sep 2006
-My dizzy spells are under control and almost gone.
-Overall, my mood and energy level are better and I am seeing glimpses of “good health”.
-My stomach is less bloated. It is flat now when lying on my back instead of being extended. Great news.
-Sleep is good and energy level better.
All in all, good things are happening.
November, 2006:
In 1998 I was running marathons and competing (age group) in biathlons (run-bike-run) until during my last race when I passed out on the bike. Six months later the dx of sarc was made. I spent several years on prednisone but my condition continued to get worse. My hip joints hurt so bad I could barely walk.
I have been on the MP for almost a year now and have had many symptoms improve/resolve.
-My left hip is 100% and the right one is 90%. I look forward to a complete cure in the near future.
Seems as long as I can remember I have had sinus congestion and post nasal drip. Several years ago a Dr. said the back of my throat looked liked Niagara Falls. This is not a symptom I expected to have improve with the MP. I thought it was allergies and had resigned myself to this condition for the rest of my life. I took allergy shots as a teenager. The past few years I have been taking Clarinex as I have been avoiding antihistamines due to BPH.
-But, the congestion seemed to be slowly getting better and a couple months ago I stopped the Clarinex. Since then, the condition has continued to improve to the point that I can now breathe through my nose with hardly any effort. I first noticed this lying in bed on my back and realized something was different. I was breathing through both nostrils of my nose with almost no effort. There is still some sinus drainage but I believe it will eventually continue to improve and go away completely. 
-An interesting side effect is that I now have a sense of smell. I can smell food cooking in the kitchen that I didn’t know existed. I am sure this will help my appetite.
- I cut the abx in half the past two weeks to help me get through the thanksgiving holiday. Good results. I was more alert and didn’t need to sleep all the time so I could spend quality time with family. I even helped my son install an attic storage ladder in his garage. Very stiff and sore from all the lifting etc. I will go back to full dosage and then cut back again for Christmas. I got some sun light exposure but didn't seem to notice much effect.
June 2007:
I plan to start doing some load bearing exercise starting at a low intensity.
Thinking back there have been several significant milestones:
Joint pain (hands and Hips) resolved, (before MP I couldn’t sit in a bucket seat because of hip pain so couldn’t drive my car)
Shoulder tendons took over 4 months to heal, seems like they healed one at a time (my left frozen shoulder is now 90%)
Clear sinus 75% of the time, when clear it is 100% (it is such a pleasure to be able to breath freely, never have been able to do that in my life)
Best regards, Gene
see also
Gene: Everything is going the way MP said it would
____________________
Gene: Sarc 98 A Fib uveitis skin cancer basal/melanoma benin colon tmr bph| proscar 5mg q24h digitex 0.125mg q24h armour 60mg q24h propafenone 150mg q8h|(p1/p2/p3)(12-05/2-06/5-06)|Benicar Q6H; D tests (1,25D/25D)11-05:50/41; 5-06:32/24; 7-06:-/11 avoid light-D
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Aussie Barb
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Posted: Fri Nov 17th, 2006 19:11 |
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jcwat101: Joyce wrote: My Dad is 83 years old. He has Biopsy diagnosed sarc. glaucoma, atrial fibrillation/ pacemaker, fibromyalgia, osteoarthritis, prostate. He has been going very slowly on the Marshall Protocol for about a year.
Noting Improvements:
re: Opthamologist visit:
My dad has open angle glaucoma.
-The pressure in his right eye, the only one with significantly elevated ocular pressure, had decreased. So, perhaps the MP is helping it. We will be following the numbers over time.
-The vision in his left eye seemed to also have improved some.
This follows on
-improvement in his chest x-ray noted a couple months ago. x-ray report of 9/30 says: "Since 6/30/05, there is clearing of bibasilar density and increased pulmonary ventilation" and under impression it says: "Clearing of bibasilar discoid atelectasis."
-He also has significantly improved in his tendency to shortness of breath.
-He can now climb a flight of stairs and be barely winded, whereas before he had to stop and rest halfway.
-has had improvements in his energy level and some of his stiffness and pains. For instance, he can touch his toes more easily now.
Joyce Waterhouse
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Joyce Dad: Biopsy diagnosed sarc. glaucoma, atrial fibrillation/ pacemaker, fibromyalgia, osteoarthritis. prostate cancer had radiation treatment about 12 years ago. He is now on a drug treatment for it (Casodex). His PSA has stayed low while on the MP. 6/05; 1,25D/25D 2/05: 30/22 3/05: 31/16 10/06: 16/8, Began MP: 9/06 Began mod. Ph. 2: 2/06 Phase 2: 7/06
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Aussie Barb
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Posted: Fri Nov 17th, 2006 20:02 |
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jcwat101: Joyce: CFS/FM/Lyme for 18 years: reporting some of the neurological improvements I have noted.
I find that now I sleep better and feel refreshed when I wake up much more often now, and have less need for sleep medication. I no longer find my sleep disturbed very much by mild activity in the evening. This used to be a big problem in that if I ever did anything in the evening besides complete rest, I would have poor sleep that night and feel a lot worse the next day. And even when I don't sleep as well, it affects how I feel the next day much less than it used to.
And it used to be that after a nap, I would feel really awful and spacey. I felt so weird when I woke up that I almost never took naps so I could avoid that feeling. Now, if I take a nap (which I need on days when my immune reaction is stronger), I feel better afterwards and don't have that awful weird/spacey feeling.
I also have greater stability in my moods. I had a lot of immune reactions in modified Phase Two that produced depression and/or anxiety and so clearly I have come along way in killing the bacteria that cause those symptoms. I also think that on average, my cognitive abilities are improving.
Other symptoms are also improving, which I mainly notice when I take a break from antibiotics for a week or more. But, I know I still have a long way to go. I have had to go very slowly, since I have been so ill for so long.
Overall, so far, I am very happy with my progress on the Marshall Protocol.
January 2007:
Good news -- finally after 2 years on the MP, my food allergies are declining - though I still have quite a few. I'll report more on it later in my PR, but I can say I finally was able to enjoy holiday foods this year after over 15 years of having to abstain !!
But, I will say that knowing my reactive foods and minimizing my reactions was very important to my being able to do the MP, especially in the first year. I still had reactions, but I knew what they were and often knew when they would be and could keep the antibiotics lower at those times to keep symptoms tolerable.
Joyce
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Joyce: 18 yrs with CFS/FM/Lyme/IBS and many food sensitivities; 8/24/04 1,25D:64, 25D:11; 1/10/05 1,25D:22, 25D:6, crushed Benicar q8h; Began modif. Phase II: 2/23/05, 9/05: 1,25D:12
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Aussie Barb
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Posted: Tue Nov 21st, 2006 00:20 |
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Sydney Chris wrote: I officially no longer have CFS... after just over 20 years of CFS (in extreme to relatively mild forms) and just over 20 months of MP
Member in Phase 3
Got the official diagnosis from my Doc late last week...
Now I am pretty sure that any expletives I put in here to express my elation will be edited out, suffice to say (in my best Aussie twang), it's a pretty good result, with hopefully more improvement to come...
Thanks Trevor (and Liz for your enduring support of Trevor and his work), Meg, The Board, Barb and my fellow MP'ers for your input, advice and support. It's difficult to actually say enough to express the gratitude I have for all of your efforts.
Best to all..
Chris
Sept 2nd 07:
Saw the Dr this morning.. confirmed my bone density reading was 5% above the population norm for my age after 2.5 years on a low Vit D diet !!
He was a bit surprised and delighted that the regime of small, regular doses of calcium rich foods each day has avoided any issues in this area.
That said he has had no bone density issues with his other long term MP'er to this point.
Best to all.
Chris
July08:
My PSA was through the roof during the first 18 months on the MP (3 - 4 times the safe level). I had a biopsy and a colonoscopy, all were good.
As the inflamation in my glands settled so did the PSA. It has fallen well within the safe zone and remained there for nearly 2 years.
September 2008:
General health is great, not much aerobic capacity, but strenght is very good. I do remain light sensitive with today's lovely spring sunshine bringing on a decent headache.
A way-point, in a life that is now unrecognisable from the previous 20 years, without doubt.
An end point for this part of the journey.. well I guess its still one step at a time...
see also:
SydneyChris: Review of the first 15 months
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Chris: MP Mar 05. IgG deficiency, bacterial infection. VitD ratio 2.8:1 (177/63), Votum Q6h, NoIR's, sunlight, diet. Ph 2 Nov05. Mod PhII Jan 06. Feb 06: 25OH 6.8ng/ml, 1.25D 18.8pg/ml. Ph 3 July 06. Sept 06: 25OH - <7.2ng/ml (not measurable)
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Aussie Barb
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Posted: Tue Nov 21st, 2006 20:25 |
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Freddie Ash wrote: today I went to the eye doctor and received a great report after 18 months on MP.
 Member in Phase 2 on hold looking for a Dr to prescribe MP meds.
HI ALL
This is Fred in WV. Just checking in to let every one know what is going on with me. I may be on hold of the Marshall Protocol, but today I went to the eye doctor and received a great report. I was on the Marshall Protocol for 18 months but I am still reaping the benifits of it.
My eye doctor found:
1) NO inflammation
2) NO granulomas
3) NO macular degenerate
4) The cataract in right eye was NO worse that last year.
5) Eye pressure was 7 and 8 in the eyes. That is even better than some that I have had, some have been 11, 12, 13 at time.
My eye doctor was well pleased with how the Marshall Protocol had helped my eyes.
This just adds to my need to get back to the Marshall Protocol as soon as possible.
Remember, we are all in this together and I am pulling for us.
Your friend in sarcoidosis
Freddie
I want to tell you the Cleveland Clinic called today to check my pacemaker and I still do not have any atril fib. It is well over a year now and no atril fib.
February 2007:
new good things:
I can smell things much better, ringing in ears better, no longer need meds for in between toes( I have used meds there since the late 1980s which my doc at that time blamed on my immune system not work correctly). Also, I have had a dark place on my left arm that has had a different feeling when shower water hit it and some pain but the last 2 nights while showering I did not have any pain when the water hit it. More unusual symptoms leaving with the Marshall Protocol on the seen of the crime of TH1 diseases. I am moving on up with the cure from the Marshall Protocol as the crime fighter.
see also:
Freddie Ash pulmonary response to the MP.
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Freddie: dx-sarc 2/82 lymph; skin, eyes, joints, esophagus, intestines, spleen, heart,lungs-meds digitek, L-thyroxine, nexium, furosemide,1/8/04 vitD-7, 1,25D-43; 5/30/03,D-11.7, 1,25D-32
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Aussie Barb
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Posted: Tue Nov 21st, 2006 21:13 |
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Ames: CFS/FMS: wrote re spontaneity and better endurance - yay!
Member in Phase 3
I am noticing that I am able to be a bit spontaneous again (a personality trait I sorely miss). I’m used to having to plan events days in advance so that I can rest adequately and medicate myself in prep for more activity. However lately I’ve had friends call me right when I wake up and ask If I’d like to go to breakfast etc..and I find myself saying “sure!” without hesitation. This never happened in the past.
I’m also finding that I can do things on consecutive days. In the past if I would always need at least a day to recover from extra activity . Now I find that I can go out for several days in a row…yay!
see also:
Ames: Listing improvements: I am thrilled
AMES re MP: A CFS patient's experience with the Marshall Protocol
Ames: positive advances
_________________
Ames: CFS/FMS/osteopenia/severe insomnia Age 24. 03/05: 1,25D-not accurate 25D-40 07/05 1,25D-60 25D-40. Phase 2: 06/05/05 25D:11/05-29,12/05-49,1/06-37, 1,25D-47 06/06 25D-20 Klonepin, Gabitril,Trazodone,Melatonin(all for sleep)Tramadol for pain
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