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Aussie Barb
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Posted: Mon Sep 11th, 2006 07:05 |
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Belinda: wrote: re The journey to recovery
Research Team
Mar 17th, 2005
Fiona,
Congratulations on the successes you've noted on the MP. One of the things we talked about at the conference last weekend was the journey to recovery. It's a slow, insidious process, much like our original descent into disease and debilitation -- only in reverse.
What happens is that success comes in small victories that have a cumulative effect. Patients have continued "eureka moments" where they notice they are doing and are able to do things they couldn't do prior to the MP. In the end, though, patients arrive at a level of functioning that they never had before the MP or their diagnosis.
This journey to recovery likely is affected by several factors, including the patient's bacterial load, compliance with the treatment and tolerance to Herxing, for example. My guess would be that it could take one to two years for major symptoms to resolve, but recovery may still ongoing after that time. For example, it took two years to get normal feeling back in my three numb toes. This was a small thing, and resolution of that symptom was NOT a high priority for me. I would have been quite happy with all my other progress to health and symptom resolution.
All the best,
Belinda
__________________
Belinda:DX: sarcoidosis April 2001, with systemic symptoms +decade. Prior DXs: fibromyalgia, pneumonia, TMJ, 12 dental fractures, nasal polyps, chronic sinusitis. Benign growths removed prior to DX.
Currently, 2+ years on MP, no symptoms, but still Herxing
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Aussie Barb
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Posted: Mon Sep 11th, 2006 07:10 |
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Chris wrote: sleep apnea, energy levels, muscles improvements.
Mar 21st, 2005
Status:
Just prior to starting the MP, I was directed to a sleep clinic for possible sleep apnea. This has gone away. While most nights I wake up after 6 hours to take the Benicar, I usually can go right back to sleep.
My energy levels are up, and the sand=in-the-works feelings I used to have in all major muscles has backed off to a once-in-a-while thing. I am still very susceptible to tendonitis type troubles if I go bowling or shovel snow, or other non-daily exertions.
see also Chris Sarcoidosis: 20 months later ... and 20 months better
_________________________
Chris: sarcoid diagnosed 1991, probably started 1983 D25/1,25: Mar04 17/80, Sep04 12/50, Nov04 8/23, Jan05 9/39 May05 6/27; in phase3; fevers, muscle pain, tinnitus, depression, mental-fog, IBS, carpal-tunnel, fatigue
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Aussie Barb
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Posted: Mon Sep 11th, 2006 07:13 |
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John D wrote: condition and stamina improved
Mar 22nd, 2005
Just to log my progress a little here: Today was my first real venture out to test my current condition and stamina ( since starting the MP one year ago).
I was able to do some downhill skiing for about a half day. It was mostly thick fog with clear patches moving through and varying all day, so I did not get a huge dose of unfiltered sunlight. I was pretty well covered up, had my bolle glasses and Keto cream on what little of my face was exposed.
The top of Big Mountain is 7000 ft asl, so this was a nice test of my lung condition. Lungs showed definite improvement under stress at this altitude, which makes me very happy! My legs also surprised me as they held up about as well as I could ever expect, since they have been given almost no exercise in the last year, and even without sarc, would expect to be burning after a little bit of skiing. Started to feel myself crashing a little bit at noon, so took a time out to get a snack and my Benicar dose and water. I managed to ski a bit more after the break, but decided to be prudent and head down the mountain after about an hour after lunch. Good thing, as I was pretty tired by the time I finished up. Legs did get pretty wobbly by the end.
I started the day feeling about as good as I get since starting the MP, but that is probably due to the fact I am probably on the tale end of the current abx combo cycle, in phase three. I headed home for a nap, and now feel ok at 6 pm, just a little eye soreness for the first time today. It was great to get some fresh air and exercise which seemed to help loosen me up some. I still sense much more fatigue than would be normal, so I guess I still have a way to go. John Dresser
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John D: Sarc- Lungs dx (biopsy) 1985, 3 yrs on pred, joint/ muscle problems. 90's: teeth,jaw, asthma(?), ankle, dizzy. Stopped Zocor 4/03 w/good results. Started MP 2/04 1,25D=58.1 , 25D=18.1 --1/05 phase 3, strong herxing with abx changes
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Aussie Barb
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Posted: Mon Sep 11th, 2006 07:18 |
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Julia wrote: ACE level has come within the normal range!
Mar 25th, 2005
For the first time since August 2003 when I was first tested, my ACE level
has come within the normal range!
8/03 234 (27-100)
9/03 211
10/03 189
1/04 209 Ca 2.23 (2.22 - 2.66)
6/04 162 Ca 2.31
10/04 117
2/05 66 Ca 2.33
Other liver and kidney function tests I was told were normal.
Good old MP!
Julia @ sarcinfo 
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Julia: Sarc dx Spring '03. No D tests. uveitis, hypercalcaemia. No Pred. MP via GP. Light/D restriction 8/03; Mino 2/04; +Beni 5/04. Phase2 8/04, Phase3 11/04. Beni40mg q8hrs. 25D 6/06: 9.2
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Aussie Barb
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Posted: Mon Sep 11th, 2006 07:22 |
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Freddie Ash wrote re pulmonary response to the MP.
March 23, 2005
"I too have good news about me. I have been on the benicar since June 23, 2004 and wearing the sunglasses since first week of Jan 2005 and today at the lung doctor they did an x-ray on my lungs. They had done one back on Oct 6, 2004 and at that time said my lungs were better, to not come back for 6 months.
Today the x-ray said that the lungs were even better than the last time. Also my B/P was 120/58, my temp 96.9(has been 92-96), my breathing test(by blowing into a tube) was up from 490 to 530 and my 02 was 99(had been 92-94). I credit the benicar and cutting out the vit D to all of this, thanks to Trevor Marshall.
Remember we are all in this together and I am pulling for US. "
Your friend in sarcoidosis
Freddie j sarcinfo
January 2007:
I am now 67 and have had problems with sarc since when I first went to doc with symptoms in Aug 1972 just before my 33rd birthday. I have been fighting sarc for over 34 years now.
Remember we are all in this together and I am pulling for US.
March 2007:
Lately I have noticed that my sore elbows (that I have had since the late 1980s) is gone, NO MORE. I was at my doctor (not the MP doc) and I weighed 154 (same since my last bypasses Nov 2003), B/P 104/58, heart rate 74, these all the same since I have been on the Marshall Protocol.
see also Freddie: great eye report 18 months of MP
___________________
Fred: dx-sarc 2/82 lymph; skin, eyes, joints, esophagus, intestines, spleen, heart,lungs-meds digitek, L-thyroxine, plavix, protonix, oxaprozin, furosemide, beni(4xday), mino(myrac)25mgQOD, O2night, 1/8/04 vitD7, 1,25D43; 5/30/03, 25D-11.7, 1,25D-32
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Aussie Barb
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Posted: Mon Sep 11th, 2006 07:27 |
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Belinda wrote re Sun & Light avoidance
Research Team
Mar 25th, 2005
I wear my brimmed hat, NoIRs, long sleeves, slacks, and gloves and walk outdoors for *an hour* every day, in the sun. I run whatever errands must be done in daytime, and travel as needed, taking the same precautions. As a result, I've had no problems as a result of traveling in the past few months, whether in an automobile or airplane.
Before the MP, I would get sick on vacation, when I always experienced more sun exposure. I just didn't know why I had more headache, nausea, fatigue, increasing pain, headaches, dizziness, etc.
Today I received a new sharp-looking pair of Bolle sunglasses, and I am thrilled to have another great tool. Does taking precautions against sun/lights bother me? No! I was never a person who could well tolerate even an hour in the sun, and I am happy to now know how to deal with it and remain able, strong and well.
___________________
Belinda: DX: sarcoidosis April 2001, with systemic symptoms +decade. Prior DXs: fibromyalgia, pneumonia, TMJ, 12 dental fractures, nasal polyps, chronic sinusitis. Benign growths removed prior to DX.
CURRENTLY: 3 years on MP, no symptoms, some Herxing. Got my life back!!
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Aussie Barb
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Posted: Mon Sep 11th, 2006 09:03 |
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DON wrote: CFS symptom report card.
Apr 20th, 2005
I feel as though I still have a ways to go before satisfactory remission which will require a continued shifting and mixing of the medications I have previously consumed, but the situation is looking good and I plan to progress.......Don
-Brain fog= complete remmission
-Concentration= 75 percent improvement coinciding with brain fog recovery
-Fatigue recovery= 75 percent improvement, usually 24 hour turn around compared to 48-72 hour pre-MP
-Stress fatigue= 50 percent improvement
-Exertional fatigue= 25 percent improvement, still not ready for routine exercise
-Tinnitus= no change, very pronounced, increases with consumption of abx, leading herx indicator
-Excessive perspiration/heat intolerance= 25 percent improvement, still very pronounced during exertional/stress periods
-IBS= 50 percent improvement, still experience 1-2 times monthly
-Weight gain= no change, may not change until I recover enough for routine exercise
-Hand pain heel areas intermitent= no change
-Cold/numb feet intermittent= 50 percent improvement
-Skin rash/lupus like disk shape = 50 percent improvement, only visable on shoulder areas after hot showers
-Mouth blistering= no change
-Irritability= 50 percent improvement, still prone to infrequent occurances of road rage with certain L.A. drivers
-Headaches= 75 percent improvement, once every few months, resolves within hours
-Sleep= 75 percent improvement, but varies with herx activity
-Fermented alcohol intolerance= dont know, havnt consumed since on MP medications
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DON: Phase 3: Long term CFS patient, Benicar probe for MP, Start MP 7/04, 125/75/68 bp/hr avg. 25D=34,125D=44, 9/23/04 test before phase 2 start, ACE1=50, ACE2=73 HIGH, CRP=1.3 HIGH phase 2- 9/04, phase 3- 11/04
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Aussie Barb
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Posted: Mon Sep 11th, 2006 09:08 |
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Gary wrote: out late: now at work, no fatigue, functioning and productive, mentally and physically.
May 9th, 2005
Well I'm going to consider today a milestone. In Phase Three. Last night I was out late, and I only had 4 hours sleep before time to get up for work. Well here I am, at work, functioning, no fatigue, and I keep being productive, doing either mental or physical work. WOW. Several months ago, if I deviated at all from my sleep schedule.. even got up one hour early, I was pretty useless for the day.
So thats a milestone for me. I'm still getting noticable herx on this combo - so still more bugs to kill, but so far this is great.
______________________
Gary: Phase 3: dx sarc 4/00- biopsy. Neuro, lymph, eyes, fatigue, liver, kidney. Benicar 5/04. Currently full dose all meds, w/Benicar 4x/day. Moderate herx, mostly days 3 and 5. Still some symptoms, but reduced.
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Aussie Barb
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Posted: Mon Sep 11th, 2006 09:14 |
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roo wrote: I am feeling soooo much better.
May 13th, 2005
I am more than happy to discuss the Marshall Protocol with anyone who wants the info. After being on the protocol for almost two years, I am feeling soooo much better.
Thanks again, Peggy
see Peggy's 3 year progress report Apr 8th, 2006
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Peggy: dx: lung sarcoid by biopsy 5/03 125D-97;25D-33. 9/2003 125D-57; 25D-19. on protocol for 2 1/2 yrs. Stg 3. finished 3rd abx. bolle100 lens. Benicar 3xday at 40mg. mino100mg every other day. feeling very good.
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Aussie Barb
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Posted: Mon Sep 11th, 2006 09:20 |
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Moxie wrote: CFS FMS review of improvements
May 20th, 2005
A review of the past 10 weeks on Phase 1 before starting Phase 2
-Definite improvement in FM pain. Now only slightly tender trigger points but all over "body fire" has gone.
-Definite improvement in right hip pain which I have had for the past 3 years.
-Pain radiating down from liver area was constant all day every day and night. Most nights took 1/2 Mersyndol Forte ( or more) for pain relief and sleep. Have not had any pain medication for past 3 weeks.
-Have been able to come off Citrus Seed Extract (tastes just like paint stripper) which I have been on for the past 4 years. Was never able to get off it as I always descended into dreadful fatigue and depression. I believe it just kept my critters at a manageable level but that has changed for the better now.
-My breathlessness is improving. Some days I actually breathe normally all day!! I tend to get more breathless when herxing in that area, but other days are much improved.
-My sleep problems that occurred when I first commenced MP have improved as well. They settled down after about 4 weeks.
All in all, not a bad report for a few weeks of treatment - onwards and upwards.....
___________________
Moxie: CFS 24 years - FMS. Benicar 4 daily - Phase 2 started 16/5/05 - Phase 3 started 10/5/06 Metformin 500mg 1/2 bd. Vit D 100nmol/L (41.6) 1,25 D 61nmol
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Aussie Barb
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Posted: Mon Sep 11th, 2006 09:24 |
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grace wrote: CFS improvements
May 20th, 2005
day 101 100mg mino qod x2
I have finished 7 cycles of 75mg and went ok. I had 5 pj days herx, and was able to sit up most of the time.This came with a real temp etc, [I hate the cfs days when I am to sick to sit up] . Mother's day was in the middle, but I and the family was alright about it. I have bump up to 100mg mino
The last week or so has been real EXCITING.
I will explain...I have a moon face and am overweight with a chin or two, no not three. Several years ago I had my wisdom teeth removed while in the chair. He was a bit brutal. My jaw was never the same, but it was no big deal.
Since cfs my jaw has been getting worse and weak but what doesn't for pwc.
Over the last week or so when I have been looking in the mirror I notice my face was flatter and slowly getting a bit hollow on long the jaw in front of my ears. I never realize it was swollen there.
After a few days I ask the family if my face look different-well they all couldn't believe it. We could SEE MP working. I am still getting herx with right ear/jaw. The strength I have to chew food -meat has never been so enjoyable, [still not as good as fish]. I can't stop thinking what it would be for my whole body to be this strong .....
my sleep pattern has been like a 'difficult baby', but i just go with the herxs
Jul 27th, 2005
Grace wrote: on the better days it is hard not to over do things. I keep rediscovering limits.
I can't remember my last 'crash', last couch, last bed, last can't sit up day. nor last time had to sit to dress after shower.
Grace....
see further
Grace: Now - I never lay on the couch or recline: March 07
GRACE being able to do things..
Grace All the things I can do
Grace Muscle wasting Muscles regained and healing
______________________
Grace: CFS CFS, Oct04| D25=26 D1,25=48/ feb05 D25=22 D1,25=52 / Jun05D25=9, aug06 D25=9 D1,25=48, feb06 D25=10 D1, 25=41 NoIR endep/ MP PHI Feb05/ Beni Q6H/ Phase II JULY05 /Phase III June06
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Aussie Barb
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Posted: Mon Sep 11th, 2006 09:28 |
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KFaucher wrote: CFS: CWD and back pain
May 23rd, 2005
Re DaveW writing "I have just recently viewed the Chicago Conference DVDs and was quite amazed to see that the strong association that Dr Greg Blaney perceived between the CWD and back pain."
I have had lower back pain off and on for 30 years. As a teen, I had scoliosis and my spine moved about 15 degrees out of alignment. If anyone had suggested that my back pain was related to my CFS, I would have considered them nuts.
Last year my back began hurting in july and just kept getting worse. I began benicar in december and the pain went away in less than 2 days! The only back pain I have had since has been during very strong herxing. The benicar relieving pain showed me that it really does reduce inflammation. The return of pain during herx shows me that the back pain was indeed due the infection.
5 1/2 months into the protocol, my back feels better than it has in years!
Ken @ Back Pain
see also
Ken Faucher: Phase 3 update - 2 year progress
KFaucher/ Ken: CFS: camping trip
KFaucher/ Ken: CFS 20 years: how much better I can get.
KFaucher: CFS: the MP does work! 6 months on the Marshall Protocol!!!!
___________________
Ken: "good days & bad days & going half mad days" J.B.
CFS 20 years 25D=30 1,25D=57 8/2/04; 25D=19 1,25D=48 12/2/04; Avoid Sun 9/12/04, NoIR 10/1/04; Benicar 12/2/04, phase 1 12/10/04, phase 2 4/5/05
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Aussie Barb
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Posted: Mon Sep 11th, 2006 09:34 |
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Guss Wilkinson wrote: My Marshall Protocol Experience..
May 25th, 2005
When I first heard of the Marshall Protocol, I was very sceptical – it sounded too good. Having had psoriasis all of my life (I am 41-years old now), there has been no end of people almost queuing up to offer me advice, or point me in the direction of a hitherto little known cure – some stranger than others, believe me.
Of course, none of them worked. I have been prodded with acupuncture needles; basted from head to foot in all sorts of creams and ointments, some very foul smelling, some quite nice; put on weird and wonderful diets (each one contradicting the last); I have been hypnotised (at least, she said I was – I didn’t feel a thing apart from the pain of parting with another $100 note); I have been prayed for (I’m not religious); I have had colloidal minerals, fish oils, potions, herbal poultices and I have been told to wear crystals, stare at coloured lights, have caffeine enemas, meditate and rearrange my room to let in the positive Chi from the north.
And then there were the real doctors. They gave me stuff too. Sometimes it was creams (sweet smelling and foul) – the only difference from the ones advocated by the snake oil peddlers mentioned previously was that some of these ones really hurt. I have also been injected; given pills that made me feel ill and forced to sunbathe (I have been burned more times than I like to reflect upon). With the real doctors, some of what they did worked – with the fake ones, nothing worked – ever. The problem was the psoriasis always came back.
I have always been blessed with self confidence – one that has been boosted by the fact that from a very young age, I have been married to a beautiful and adorable wife who truly regarded beauty as being more than skin deep – and, believe me, there has always been lots of skin. In fact, we always joked that the only way to get me truly out of bed was with a vacuum cleaner!!
One day, I just threw my hands in the air and said: enough is enough. No more treatment for psoriasis. From now on, it would not be my problem – it would be other people’s problem!!
Then in 2002, I was diagnosed with Sarcoidosis. By the time I was eventually diagnosed, I was sure that the end was neigh. I was exhausted: I couldn’t breathe; the coughing; my once superb fitness was gone; I had not had a good night’s sleep in 15-years; the kidney stones – they say that pain is character building. 20 stones in one year – I must be one hell of a guy!! I was also finding it hard to concentrate on anything and my memory was shot. Was I going mad as well?
With the Sarc, the psoriasis was long forgotten – it was the least of my problems.
It didn’t help that the doctors didn’t have any answers. They threw prednisone at it twice (two 9-month courses). Each time, it turned me into a fat and very bad tempered monster. That my wife and kids stuck it out is beyond me – they are heroes!!
And the damned Sarc came back each time – and worse than before. And to add insult to injury, the psoriasis flair after the prednisone courses was wicked. Not only was I ill, but I also looked awful!
And then, out of the blue came an e-mail from Meg. She had read a cry for help on the World Sarc message board and decided to inform me of the Marshall Protocol.
I nearly deleted it on sight – another snake oil peddler. I hope that hell has a very special spot for those parasites!!
I have no idea why I didn’t delete the message. It must have been a Sunday morning and I must have had some time to kill because I clicked on the link she provided and started reading. I have enough medical and scientific knowledge to know that what they were saying looked and sounded ok. I was now a little interested, but I knew that I needed help to evaluate the science in detail.
One of my best friends is a doctor – an Accident and Emergency Physician. He and I took a couple of weeks to look through all of the articles and his response was that he didn’t believe any of it, but the science was sound.
I asked him if it was worth a shot and he replied that given the alternatives, it would do no harm. He warned me very seriously not to get my hopes up. I didn’t. I had been down that road too many times before – I would give it three months and no more.
So, in the middle of October 2003, after enormous difficulty and having to import the medication privately, I started the Marshall Protocol.
I know that compared to others that I have come across in real life, and in cyberspace, I must have seemed mildly afflicted. I still worked full-time, I studied part-time, I ran a martial arts club (all be it from the side-lines); I was on the board of trustees of our local school; I was a father to my children, a friend to my friends and a husband to my wife. But I was running on fumes and something had to give. The MP was actually my last hope before I would have to start dismantling my life – and in my heart, I knew it was a load of rubbish!!
Looking back on it, I herxed big time. I felt really crap. I was dizzy, I found it hard to think, I couldn’t move without coughing till I puked, my sinuses were flooding me and I was in pain – everywhere. I was feeling worse and they were telling me that this was good because it meant that everything was working. How did I know that it wasn’t my Sarc that was getting worse? I was getting worse, but it was claimed that I was actually getting better – do you know why I believed it – sceptical me?
It was because from day 1 of the MP, I slept like a baby – for the first time in 15-years. It was heaven, it was blissful, it was ecstasy and it was one huge problem less. It was worth all the hassle and expense for that one reason alone!!! From that moment, guys, you had my full attention!!
I stuck at it. I had real problems telling when I was herxing – I was so used to feeling bad that when a new symptom came along, I didn’t notice. I could not tell the difference between the Sarc and the herx. I decided that everything was herx, even hangovers!
But ever so slowly, I started to emerge out into a world without hurt, without brain-fog and with hints of more energy – and guess what? My Psoriasis started to clear. What a bonus!! I was not expecting it and this time, it was not coming back. I went from 70% coverage to 90% clear – very little remains.
Yes, I am still herxing but it is waning. Yes there are set backs as I try new combinations of antibiotics – but nothing like it was. The mind is a strange thing - I now have to struggle to remember how bad I felt.
For those who want to read my full story, go to my website on http://www.bugeikan.com and scroll down on the table of contents until you see a link called Sarcoidosis. Please excuse the martial arts slant to the articles I have written there.
Get well people and thanks Trevor, Meg and team.
Stay tuned!
Guss
Guss Wilkinson: Dx Sarc May 2002 Stage 2. Estimate Sarc since 1987. Lungs, Joints, Kidneys & GI. Two failed Prednisone courses. Started MP: Oct 2003; Phase III since July 2004; BP 100/60. Pretty herxy at the moment! Wife also Dx with Sarc May 1995 - symptom free.
June 13th, 2005 Guss wrote:
Hi All
I recently re-read some poetry that I wrote back in the middle of 2003, before I had even heard of the Marshall Protocol. I was ramping down from my 2nd failed course of Prednisone. I was feeling absolutely terrible and the speed of my decline convinced me that I actually didn't have long left to live.
It is very easy to forget just how bad you felt when you start to feel well again and I have been feeling fairly good for some time now (with the odd herxy interuption - but nothing more than an irritation).
I had never written poetry in my life and I haven't written anything since. Reading it now brought all the emotions back to me - memories of how bad I felt.
I'll share them with you here.
Hang on in there folks - it does get better!!
Cheers
Guss
Random thoughts
(Dedicated to all suffers of Sarcoidosis: by Guss Wilkinson)
Who the hell is that fat guy in the mirror?
His face is all swollen and puffy!
Oh yes, ‘tis me and Mr Prednisone!
No, it can’t be me: I’m fit and lean and full of energy?
But that was before...
...Dad, please come and play football with me?
Sorry mate, I’m just so tired.
Dad, will you bike with us?
Sorry guys, not just now.
Dad, we’re playing monopoly – do you want to join?
I’d love to son, but I’m just going to have a lie down.
Dad, can we play black jack?
Maybe tomorrow boys, I’ve had such a hard day.
Dad, can you read us a story?
Ask your mum, I’m busy.
Dad, do you want to join us for a walk?
I really have to rest guys.
Dad, how about some chess?
Not right now Jake – thanks for asking.
Dad, will you take us swimming?
I’m not feeling to good Sam.
Dad, this is a great film, will you watch it with us?
I’ve seen it before.
Dad, can I borrow your computer?
No!
Dad, can you make us your pancakes?
Mum’s cooking you fish tonight.
Dad, can you build us some Lego?
I will, but not just now.
Dad, will you talk to us before we turn off the light?
No, it’s getting lat…….Ok, what do you want to talk about?...
…When are you going to get better?
I don’t know, but real soon I hope!
Dad, when are you coming off your medication?
As soon as I can, mate.
We love you Dad!
I love you too, guys – more than anything.
You’re the best dad in the world!
….swallow….Note to self: I must remember to stop saying no!
Good night, sleep well – I’ll see you in the morning!...
Dad, please come and play football with me?
OK.
You’re the best dad in the world!
Dad, will you bike with us?
Sure thing boys.
You’re the best dad in the world!
Dad, we’re playing monopoly – do you want to join?
OK then, set it up.
You’re the best dad in the world!
Dad, can we play black jack?
Yep, let's do it.
You’re the best dad in the world!
Dad, can you read us a story?
Of course I will.
You’re the best dad in the world!
Dad, do you want to join us for a walk?
Great.
You’re the best dad in the world!
Dad, how about some chess?
Go for it.
You’re the best dad in the world!
Dad, will you take us swimming?
Why not.
You’re the best dad in the world!
Dad, this is a great film, will you watch it with us?
Make room for me then.
You’re the best dad in the world!
Dad, can I borrow your computer?
Yes, but be careful.
You’re the best dad in the world!
Dad, can you make us your pancakes?
That's a good idea.
You’re the best dad in the world!
Dad, can you build us some Lego?
OK.
You’re the best dad in the world!
DEEP INSIDE – THERE IS A RESERVE: IT CAN BE VERY HARD TO FIND, BUT IT’S THERE – FIND IT, BEFORE YOU ARE FORGOTTEN!
A Piece of Cake: by Guss Wilkinson
Pour 1-cup of insomnia, 1-cup of fatigue,
And 1-cup of irritability into a bowl,
Pour in 1 full pint of frustration,
Stir in some pain, breathlessness and confusion,
Add some pills, anything you like – it makes no difference,
Bake in an oven of self-pity until firm,
Sprinkle on a pinch of hope before serving.
See! With Sarc, life really is a piece of cake!
(Inspired by Bryce Courtney)
The Book: More for Sarcoidosis people - by Guss Wilkinson
Lying in bed turning the pages of the book,
That book, the story of my life,
How many pages has this monster already written?
I certainly can’t tell,
I look at the pages as they write themselves,
The words are all blurred,
That damned fog in my head,
The lead weighing down my limbs,
The open sores of my soul,
Out of which my strength runs,
Forever gone?
Let’s turn back the pages,
I need to remember,
But surely this is fiction,
You can’t believe everything that you read,
Who is the person in this story?
What boundless energy, what resolve, what strength, what joy,
Slim and fit, the smile, the eyes that sparkle,
It can’t be me,
The monster rules now,
The past is soon forgotten,
The mirror sneers at me,
Fat, grumpy, sad, exhausted, mean, hopeless,
Who would want that as a lover, a father, a brother, a son or a friend?
Flicking forward to where the words continue to appear,
They cannot be stopped,
How many blank pages are there left,
The thickness is elusive,
Can this monster be beaten?
Can I poison it with this poison?
Three times a day, every other day, every day,
If so, what then,
Who is waiting at the other end?
A shell or a man,
I suppose it is up to me,
Get up you Norseman,
One foot in front of the other,
The ending must be,
They lived happily ever after,
Valhalla will have to wait,
I have a book to write!
Guss doing well
Guss Insomnia
Guss exercise questions
Guss Sarcoidosis Update
Guss summary of MP
Guss psoriasis
Guss Sarcoidosis Psoriasis:3 years progress
___________________
Guss: Dx Sarc May 2002 Stage 2. Estimate Sarc since 1987. Lungs, Joints, Kidneys & GI. Two failed Prednisone courses. Started MP: Oct 2003; Phase III since July 2004; BP 100/60. Ony mild herx at the moment! Wife also Dx with Sarc May 1995 - symptom free.
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Aussie Barb
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Posted: Mon Sep 11th, 2006 10:04 |
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GeorgeinRollaMO wrote: re Libido
May 31st, 2005
I wrote a few weeks ago...
"Why is air like sex? No big deal until you are not getting any."
Well, this will be a Memorable Memorial Day for me, and DW!!!!! 
Trevor has said that the 125D hormone affects all other hormones. In April of two years ago, I did a 24-hour hormone panel that showed that my hormones were all out of kilter, and that my testesterone was sub-basement. I knew it!!!  I considered Viagra, but I really do not like such. I thought that there must be an another answer than that.
Well, it sure does appear that Trevor is correct about the 125D affecting all other hormones!!!!! for at least two years.
Would you allow me to count this as another SUCCESS!?!? of the MP. All indications are that it is the reason.
Dark Vader (aka, George, the Smiling One!)
____________________
George: 125D = 57, 25D = 61 on 7/14/04. ACE = Normal. Benicar 9/1/04. Mino 10/5/04. Borreliosis, infected 3-31-00. New 125D = 66, 25D = 43 on 10/25/04.
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Aussie Barb
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Posted: Mon Sep 11th, 2006 10:08 |
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GeorgeinRollaMO wrote: Borreliosis does respond to the Marshall Protocol safely!!!
June 17th 2005 George wrote: LeAnne,
A long time ago, penicillin was discovered. How it worked was not known fully. Penicillin did not have a doubleblind-placebo-controlled study. Penicilin did not have a peer-reviewed medical journal appraisal.
But it worked! It was used! And mankind benefited immensely! And is still benefiting!
There are a fair number of hundreds of people who have used the MP ahead of you. I am one that is still using it. I did not fully understand every detail of how it worked... just a Readers' Digest version.
I saw most of my symptoms as being the same as people before me that had success. And I wondered why their trouble was being called, sarcoidosis. I had never in all of my life, before reading the sarcinfo site had heard of sarcoidosis. I had borreliosis because I knew I had borrelia bacteria in my body. The overall logic sounded correct, or at least, good! Even for my borreliosis.
I was hurting! I had tried almost everything else that sounded logical, and, it all failed, including two surgical operations on my spine that was "guaranteed" to resolve my pain, but did not in almost two years of waiting after the operations. I only had my life to lose, and I was already losing it, in a very painful way. I truly thought that I would be in a wheel chair within two years time, and worse, thereafter. So, what the hell! I thought. What have I really got to lose? I am not going to be the first experiment, or, even the second. There must have been two hundred ahead of me that had success.
I gambled. I am winning! I am having small successes that will one day add up to be one big success! Something the orthodox medical community did not... could not give me.
You may never know all of the details of how it works. I do not! I doubt that Dr. Marshall knows ALL of the details. Who can crawl into all of those microscopic spaces to see and validate exactly what is going on. The LORD, no doubt!
But the MP does work! Well, I can vouch for it working for me, is what I know for a fact. In the six and a half months of doing mino, and then doing a Bowen RIBb test, my test dilution ratio went from 128 to 32. I had done the long, strong and varied abx of the LLMD's protocol, and my Bowen test result stayed at the highest dilution ratio of 128. The MP works!! for borrelia, at least.
Just as penicillin was able to work without being explained how, without placebo-doubleblind-controlled studies.
Try it! You'll love it, somewhere along the route. You may also hate the Body Snatchers within you, along the route, also, because they will put up a good fight to stay in and control your body.  It is not an easy two-pills-twice-a-day-treatment!
You will not be making a mistake!
Borreliosis will, and does, respond to the Marshall Protocol...safely!!! Provided that one does THE Marshall Protocol, and not something else, such as, even using the same meds, but in a different way.
Dark Vader (aka, George)
___________________
George: 125D = 57, 25D = 61 on 7/14/04. ACE = Normal. Benicar 9/1/04. Mino 10/5/04. Borreliosis, infected 3-31-00. New 125D = 66, 25D = 43 on 10/25/04.
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Aussie Barb
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Posted: Mon Sep 11th, 2006 10:13 |
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Huey wrote: CFS symptoms improving
June 5 2005
day 304 ben, day 298 mino, day 205 phase 2
Report on cycle 22. This was a shorter cycle, as was previous, which might explain why the herx set in both soon and strong.
The increase in herx symptoms were evident by day two, and peaked by day 4. Days 4 and 5 were difficult…hard herxing fatigue, muscle weakness, more wobbly knee, poor bowels, cold/numb feet and fingers, flushed/burning skin, and a neural buzzing sensation on the back of the hands, which is new.
-Days 6 through 8 were out of the ordinary. All the above symptoms became mild, and I found myself feeling somewhat hyper…I have never before felt hyper. I even sought out my neighbors for a friendly chat – something I generally try to avoid – and found myself doing most of the talking.
-Additionally, I seemed to be developing endurance. PWC's do not have endurance. They start the day sick, exhausted, and sludge like, and go downhill from there. But as I slowly muddled through my home chores, yard work, etc, hour after hour, I did not predictably weaken with the usual cfs post exertional crud...quite the opposite. I maintained my stamina throughout the day. If I became overly tired, I needed only a short break for my strength to rebound. This is very significant. With cfs, one never rebounds…one weakens and perhaps collapses.
The above terms (stamina, strength, rebound) should be taken with the most modest meaning possible.
-Nonetheless, I can feel my body, ever so slowly, ever so very slowly, changing.
-The light sensitivity continues to lessen.
-The strange lung phlegm herx has become very mild.
-The malodorous skin dampness is rare.
-Muscle cramps have vanished, though wobbly knee continues to plague in an on again off again manner.
-The pots/nmh/dizzyness, which was cfs common pre-mp, and acute to the point of nearly blacking out during mp phase 1, has now become very both mild and rare.
-The symptoms, from cycle to cycle, are now predictable, and clearly diminishing.
____________________
Huey 1990--sudden onset CFS Jul 04, d test 25d-29 1,25d-34 Aug 6,04--Started phase 1 Nov 16,04--Started phase 2 Sep 28,05--Started phase 3
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Aussie Barb
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Posted: Mon Sep 11th, 2006 10:18 |
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catlady wrote: CFIDS Concentration improvements ....
I had this type of concentration problem for the past few years before starting the MP. It was a factor in my becoming unable to work. Basically what you described about your friend sounds exactly what I experienced when in exacerbation periods of my CFIDS. ...............
............... At any rate, on the MP, currently in my 6th month and in Phase 2 on the "alternate" combo, I find that my biggest improvements have been in my mental functioning. At the start of the MP I could only read for short periods of time and now I can read for hours most days, except maybe not when in a bad herx. And I have virtually no anxiety. I continue to have lots of fatigue, pain, and have to spend most of the time lying down. However, regaining my intellectual functioning has been one of my biggest goals and I already count that a great success. Friends have been commenting on my sharpness, as well
I think also my problems were HPA-axis related, as did my doctor. Of course now we know the treatment!
Best wishes,
Catlady
________________
Catlady: CFIDS 25 yrs, worsened 1992,diagnosed 2001; seizure disorder 1992, myofascial pain syndrome, migraines 11/04 25D 21, 12/04 1,25 D 48;5/05 25D 23 1,25D 54 Benicar 12/22/05,Mino 1/4/05, now at 100 mg. PHASE 2 5/05 Neurontin Tylenol Benadryl K-creme
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Aussie Barb
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Posted: Mon Sep 11th, 2006 10:24 |
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KFaucher wrote: CFS: the MP does work! 6 months on the Marshall Protocol!!!!
Jun 10th, 2005
Phase 2 Report
6 months on full Marshall Protocol!!!!!!!!!!!
Wow! How time flies! Although this has been a rough 6 months, I have had many months that were worse. The 7 months prior to the MP were much worse.
-Now that I am in phase 2 I get as many, or more, good days than bad ones. Even when I get a really nasty herx I know it won’t last, and that makes it much more bearable.
-My light sensitivity has reduced greatly over the last 2 months. My energy is better.
-Mind is clearer.
The MP does work! I feel bad for the people that are having a difficult time, but I am cruising along as predicted. I am thinking that 2006 is going to be a very good year!
Tight lines, Ken
"Believe one who has proved it. Believe an expert." Virgil, Aeneid
Roman epic poet (70 BC - 19 BC)
"Knowledge must come through action; you can have no test which is not fanciful, save by trial" Sophocles., Trachiniae, Greek tragic dramatist (496 BC - 406 BC)
"Little by little, one travels far." J.R.R. Tolkien
"Life is either a daring adventure or nothing. Security does not exist in nature, nor do the children of men as a whole experience it. Avoiding danger is no safer in the long run than exposure." Helen Keller US blind & deaf educator (1880 – 1968)
"Those are my principles, and if you don't like them... well, I have others." Groucho Marx
see also
Ken Faucher: Phase 3 update - 2 year progress
KFaucher/ Ken: CFS: camping trip
KFaucher/ Ken: CFS 20 years: how much better I can get.
KFaucher: CFS: CWD and back pain
____________________
Ken: "good days & bad days & going half mad days" J.B.
CFS 20 years 25D=30 1,25D=57 8/2/04; 25D=19 1,25D=48 12/2/04; Avoid Sun 9/12/04, NoIR 10/1/04; Benicar 12/2/04, phase 1 12/10/04, phase 2 4/5/05 Phase 3 Sept 06
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Aussie Barb
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Posted: Mon Sep 11th, 2006 10:32 |
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Big John wrote My MP Experience, improvements listed.
Jun 14th, 2005
Back months ago when I was first researching the MP I was quite skeptical. Fact is if you read some of my early posts you can tell that I was quite skeptical. After a year a lot has changed for me. Some good some bad. When I first started the NP I was in a hurry to get better.. I am sure we all feel this way. I was not however prepared for the trop that I was about to take.
I will not fool you or lead you to believe that it was a road that was without much turmoil. None the less I was determined to follow through. I have been on the MP (more or less) for almost a year... My how time flies when you are having fun! Or not!
Like many people out there I had tried many different "cures". All left me with little or no change in my condition.. Fact is, no doctor really could diagnose with certainty what I was afflicted with. I was on 2 very heavy duty pain relievers just to deal with the pain. I was at one time on 14 different medications and was so tired I could not get up to pee. Many of us have been there, some may be there now..
The protocol that you are researching is not without its own tests.. Attested by many, this path will lead you to get to know yourself very clearly. It will question the very strength within you and will lead you to power that you did not know existed. You will have days that you will not be able to get out of bed, you will have days that you may even give up. Those are the days when this web site becomes most important.
You see, that guy who was on all those meds and addictive pain killers is now taking Tylenol, nothing more.. The pain still exists and I am far from cured, however there does appear to be a pot of health at the end of my rainbow, and at the very least a quality of life that is much better than when I entered the program. I don't post much anymore because my eyesight is still challenged and I have strayed from the protocol and have had cortisone injections.. I could not read the big "E" on the chart.
Although I am not quite sure what fate awaits me and I know the return of my sight may only be temporary I live from day to day without much of the pain and discomfort that plagued me for years.
Many of my issues have alleviated.
-Prostate discomfort has healed,
-neck and shoulder pain is gone.
-Muscle cramping has almost disappeared.
-pain in my jaw has left.
-I have not had a gout attack in a year.
-Chronic sinus infections are practically no existent.
-Wrist and elbow pain is also dissipated.
-My mind has times of great focus. (other times I can hardly talk.)
-Pain in my foot diagnosed as chronic inflamation and arthritic (I have had it for 5 years.) has healed.
-My back pain in my lower lumbar diagnosed as "degenerative" has stopped hurting.
-But above all my wife says I am again argumentative......
Good health!
____________________
John: Reiters Syndrome, Reactive arthritis, chronic Retina inflamation, inflamation hips, knees, joints, brain fog. Fatigue,, Scooter Jockey. Benicar 9/23/04. Mdx: Lexapro 10mg, probiotic, fiber, mino 100mg q48, Phase2 12/05. 5/06 60% symptom resolution. Phase3
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Aussie Barb
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Posted: Mon Sep 11th, 2006 10:36 |
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Ms. Dale : Ms Dale's moving testimony on the effectiveness of the MP can be seen on our Chicago DVDs.
Jun 15th, 2005
Meg wrote:
In an email to me, Ms. Dale who has been under considerable stress recently due to her father's sudden poor health related this message:
"I think back to the condition I was in just a couple years ago and truly there is no way I would be handling and doing what I have accomplished in this current situation. When I read this email regarding the person who posted:
It would be nice if the board could show us several examples of people that have gotten out of what I percieve to be the most detrimental symptoms (anxiety, brain fog and fatigue).
Boy - could I give them some FACTS.
Anxiety? What I have accomplished this past week is truly proof - that without the MP I would have been mentally crippled with the amount of anxiety that has been experienced - and I was not.
Brain fog? Dealing with Neuro Surgeons - Hospice Consultants - understanding the medical mountain of information thrown at us - and etc - and then being able to explain and make sense to my mom in understanding exactly what they are saying and doing - trust me my brain was working overtime. Being her "rock" - what my mom has used to describe what I have been for her during this entire situation - we all know that pre MP there is No Way that I would have been the woman I am now in helping her.
Fatigue? Before the MP I would never have been able to be still standing after the days I have put in between the ER - Neuro Surgery Unit - ICU - etc etc
So does the MP work? - you bet your boots."
===============
July 15th 2005 from Ms Dale wrote:
re FAQ Will the MP treat paresthesia and neuropathy?
"The proof is in the pudding that I have had recovery... of these very conditions that gripped me (1993 )
In whole body... I would guess-ti-mate - I am at at least 85 % improvement since starting the MP in Nov 2002.
And I plan to see 100% - as it just keeps getting better and better.
I remember well the LOOK on my Neuros face as we both witnessed what
had improved or resolved ( 2005 ) - after 12 years!!! He was shocked."
___________________
Ms Dale: Sarc: MP Nov 2002
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