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Aussie Barb
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Posted: Mon Sep 11th, 2006 10:41 |
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Guss Wilkinson wrote: re Exercise Questions. Martial Artists.
Hi Thai & Xtian1
These are very good questions and very good answers. My wife, Helena, and I are both martial artists. Helena has trained karate for just over 20-years, and I for just over 30-years – and we both have run clubs since 1987. The martial arts have been our hobby, our passion and our identity – a significant proportion of our social life has based around our clubs and our students.
Helena then came down with Sarcoidosis – and it seemed to come all of a sudden after a particularly heavy cold. There was no question of her training – she couldn’t get through the day…she couldn’t eat, she couldn’t think and she definitely couldn’t move.
I was there supporting her, but it is obvious to me now that I had no idea of what she was really going through. At first I thought…come on, pull yourself together – you’re a martial artist for goodness sake!! Then after a few months, she had gone down to 43 Kg in weight, I began to think that she was dying.
I moved us out of the flat (at the time I was convinced that she was reacting to something in the flat where we lived) and after a while, her disease started to turn – she started to get better. At first, she just turned up to training to watch and as time went on, she started to join in the lighter stuff. I remember each time that she did anything; she would have to lie down at the side of the hall to recover. This was all back in 1995 and it took her 6-years to feel fit again.
Then in 2002, I got sick – it sounds sudden, but it wasn’t. I had been going through a steady decline from elite fitness for a number of years without noticing. At first I thought I was getting old…then I thought that I was drinking too much to be an athlete (I like my glass of wine with my evening meals). I continued to decline, and I started sitting out the warm-ups (something I had never done in my life)…or I would cheat when no one was looking…or I would correct students as they warmed up – anything to get out of it – I just didn’t seem to have enough breath.
Then one day, while sparring, I simply ran out of oxygen, had to stop and threw up. My decline continued and eventually I was diagnosed with Sarc. At first, all I felt was relief – I wasn’t getting old, I wasn’t drinking too much, I wasn’t depressed, I wasn’t letting myself go…there actually was an explanation – I was seriously ill.
Prednisone helped…briefly…I would bounce around feeling great for a couple of weeks and then I would sink into a very rapid decline as the treatment failed – this happened twice.
I never stopped training with the MP (which seriously depends on your definition of training). The herx induced cough was wicked – very productive. Any exercise would induce a coughing attack that would end up with me throwing up. It happened every time.
After the coughing, my lungs would clear somewhat and I would continue – but then my lungs wouldn’t work properly – I would not get sufficient oxygen and I would turn blue – and sometimes to the extent that it would scare people.
It is not a case of being strong and pushing yourself through it – you have to listen to your body and stop.
For me, the herx varied (completely unpredictably) in intensity…sometimes I couldn’t walk more than 5-steps without stopping. Sometimes, I felt reasonable and could demonstrate fairly well, before having to stop. Sometimes I was just so tired that going to the club was absolutely the last thing that I wanted to do – but each time my wife booted me out of the sofa and dragged me moaning and swearing to the club – people were waiting for me…I had to go.
I became very good at conserving my energy and learning to predict (with a couple of minutes notice) how my body would react – and remove myself from the training hall so that I could die in peace. We had had a heart to heart with our other instructors and students about my condition from the very beginning – they were very understanding and very supportive…but, boy was I close to throwing in the towel…many times!!
Now after 20-months on the MP, I still cough – sometimes (I don’t throw up any more). I still run out of oxygen and turn blue, but I can do far more before it happens. I have far more energy and I don’t moan and swear at Helena before training nearly as much. I am still a long way from being what I would call fit, but I will be able to get there – my wife is my role model…if she can do it, I can.
Now comes the interesting bits…I realised from very early on that I would need something not constrained by my physical shortcomings to focus on – I focused on my Academic development (working towards my Masters)…which turns out to be one of the very hardest things I have done. But it was/is rewarding – just as much, if not more than my physical achievements. This helped me not to wallow in self-pity as I did when I was on prednisone – it also helped to make time go quickly. Time going quickly was essential for me to notice my improvements on the MP and was one of the factors that helped me to stick with it.
Also, my illness has made me far more understanding and tolerant of other people’s baggage – I am far less arrogant and have far less of an “if you are tough you can push through it” attitude.
I have also learned that I will never be as fanatical about anything to the degree that I was fanatical about martial arts. Fanaticism steels time away from other experiences – my social life is also a lot richer as we are no longer locked in to spending time with like minded people. I no longer care if I am not shaped liked a Greek statue – physical attributes are just temporary gifts – intellect is somewhat longer lasting. Our identities are no longer solely reliant on our physical achievements.
In a way, I am grateful to my illness – it seems to have lifted a number of self imposed burdens. Having said that, I’ll be pleased when its gone!!!!!!!!!!!!!!!!!!!!!!
Cheers
Guss
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Guss: Dx Sarc May 2002 Stage 2. Estimate Sarc since 1987. Lungs, Joints, Kidneys & GI. Two failed Prednisone courses. Started MP: Oct 2003; Phase III since July 2004; BP 100/60. Ony mild herx at the moment! Wife also Dx with Sarc
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Aussie Barb
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Posted: Mon Sep 11th, 2006 10:46 |
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scooker48 wrote: Sarcoidosis: CT Scan of chest results: improvement.
Jun 30th, 2005
Phase 2 Cycle 1 Day 10
I had a CT Scan of my chest done today and may I share the results with everyone. Overall, the studies said there is improvement.
Findings: Previously noted scattered ill-defined bilaterial nodular opacities and interstitial pulmonary parenchymal prominenece, primarily in the parahilar distribution, has definitely improved since Febrary 14, 2005. Currently, there are still numerous vague tiny bileral nodules, but these are much less conspicuous than on the prior study. A fairly well-defined 9 mm nodule in the lateral portion of the right lower lobe persists without change. Other smaller well defined right upper lobe nodules also remain unchanged. No new nodular opacities are seen. No mass detected. No pathologically enlarged mediastinal, hilar, or axillary lymph nodes are appreciated. The pleural (can't read word on fax) are clear. Cardiovascular structures are stable. Below the diaphragm, there is no adrenal mass. Scattered tiny low density lesions throughout the spleen associated with very mild splenomegaly appear unchanged.
Impression: Overall improvement with reduction in overall conspicuity of bilateral vague pulmonary nodular opacities. These findings would be consistent with improved sarcoid. Scattered tiny low density splenic lensions persist without change.
The reader should note that I started with Benicar on 2/17 and added mino 2/26. 4 months MP.
Thank you all very much for your patience to help me get better.
Sherry
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Sherry: Dx 12/04; CT scan Sarcoid liver spleen & lungs. Started MP Benicar q8 hrs 2/17/05&Mino 2/26/05. Benicar q6hrs 3/14/05. 2/2/05: Vit D at 25 & Vit D 1,25 at 62 . 3/30/05 Vit D at 28 & VitD125 48. 4/30/05 Vit D 26. Phase 2: 6/20/05 | Phase 3.
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Aussie Barb
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Posted: Mon Sep 11th, 2006 10:50 |
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Lonestartick wrote: neuro-borreliosis (chronic, late-stage Lyme disease) turned the corner..
Jul 4th, 2005
Hi All,
It's almost my MP birthday, or is that re-birthday?
I sense that I have finally turned the corner. I started the MP almost a year ago, at the end of July, and what a year this has been! Until quite recently, I wasn’t confident I was going to be successful with this protocol. Now, I’m counting on it and I'm planning for a healthy, happy future.
I just wish that I had read the quote of Trevor’s regarding taking phase 2 really slowly prior to starting the MP, especially prior to starting phase 2. I would have liked to understand this before embarking upon this journey, before I hit the thick of my brain fog of my neuro/depression Herxing. It might have saved me some misery had I known to go much more slowly. I’m so grateful to those who have gone ahead of me, because I can’t imagine overcoming the many doubts they must have if I had been among that first wave.
At one point I thought that I would make faster progress if I dug in and pushed as hard as I could personally tolerate it. That worked up to a point, but I dug myself in and almost didn’t get back out of it. Slowing down seems to have sped up the healing process considerably, almost unbelievable so. I’m now at the point where I feel that nothing will derail me from my successful MP journey. That’s hard to believe when I was facing serious doubts just a few months ago due to a Herx-related depression.
I’m so glad to have made it to this point. I think that I am actually going to plan myself an MP birthday and celebrate because getting through this last year was no small task. Of course, as the fates would have it, my MP birthday coincides exactly with my husband’s birthday, which is also the same day we got engaged. This was quite by accident, but fortuitous, I think.
I sense that in the past at various points in my recovery, I have still never known what recovery really was. If I had to guess then where I was on a recovery scale, I would have guessed myself to be much higher on the recovery scale than I actually was simply because I just couldn’t imagine what real health could feel like.
I calculated the effects of reaching my late 30s and what I thought was a natural aging process. I became so ill so early in my life that I had nothing to gauge real health by. Naturally, I was confused whenever I enjoyed any significant improvement. Given any small improvements at all, I thought then that I had achieved health.
It scares me to think that I once thought my improvement on Rocephin was close to real health. I did become considerably more energetic and I recovered some motor skills and neuro function that kept me from an MS diagnosis, but I was so sick when I began Rocephin that any improvement at all was life changing. After Rocephin, I actually expected to live my life with some residual joint pain and swelling.
My sore throat with red crescents and swollen glands had never ever let up since as far back as I can remember – over 30 years. Without trying to intentionally, I discounted that the fact that my throat and swollen glands always brought me to a complete stop every single time I exceeded my narrow limits and overdid activities in any way.
I think I had come to expect that I would have to ignore certain symptoms and live with lower expectations of what I could physically do. That was until my symptoms finally resolved entirely. Even the sore throat and glands went away on the MP. I never ever really expected that this would go away because it was ever present, even while on multiple high dose ABX cocktails. If the nuclear assault couldn’t get it, why should a low dose protocol take care of it completely?
After IV Rocephin, I figured that I was 80-90% recovered and that the rest would come in time. Looking back now, I see that I was relapsing within just a few weeks of being off Rocephin. The orals I transitioned to in order to mop up the rest of Lyme and co-infections merely slowed my gradual descent downward.
At my highest point on IV Rocephin, it was a real struggle to make it out of the house by eleven or twelve in the morning. I made it out two days a week at 9am, but that was a real task, complete with 2 hours of horizontal wake-up time just so I could ease into the day. I was grateful for that level of improvement, because it was a far cry from being bed bound or home bound.
These days I can easily get myself up and out of the house in the EARLY mornings without a struggle, and without needing incredible will power to do it. I wake up and I’m good to go. I almost never need a lengthy time to ease myself into the day and it’s such an easy transition to go from being asleep to being awake.
This is a true miracle for me because I have struggled to become a morning person for ever and now it’s just happening all on it’s own. I am able to get out of bed and moving without getting side-tracked and lost in fog and fatigue. My 85-90% victory in the past is now looking as if it was only a 55% at best. What a difference a year has made on this protocol!!!
Now I am feeling so much better than I ever have, but I sense that I am still healing. I don’t know where this journey will take me or how long it’s going to take, but I’m sure I’m on the right course and I’m going to give this protocol all the time in the world to do the job. I have enjoyed so many positive changes that I’ve never experienced on any other treatment, so I’m sure it’s going to take me all the way. I just don’t know where all the way will be because I sense that I can’t imagine that level of real health and energy because I have never experienced it before. I trust that this time I’m going to know the difference between minor improvements versus real health.
I guess the MP is like climbing a large mountain. It is a real struggle filled with doubt, oxygen deprivation and confusion. You reach a summit and you think you’re there, then you have to descend before the next ascent. The top of this mountain is above the cloud line so I don’t know really how far away or how near it is. I just know it’s worth climbing all the way. Although I can’t quite see it see the top, my guess is that the view is heavenly.
I am really looking forward to attaining a level of health that I’ve never seen before, as far back as I can remember. It sense it’s not too far away. What amazes me is that every time I think I’m almost there, things change in little ways that tell me it’s only going to get better.
It’s so strange that for the most part I fall into bed tired at night, but not exhausted. It’s strange not to rely on sleep meds or even to need natural remedies. My head hits the pillow and I slip easily into sleep. It’s strange to wake up refreshed and rested with hands and arms that function and aren’t numb and asleep for the first 3 hours of the day. My hands used to take forever to wake up, if they did wake up at all. Now I can open jars and forage for food as soon as I pop out of bed. It’s alien to be able to pop out of bed and actually be awake and able to function.
I can easily get out of the house and go meet someone for breakfast at 6 or 7am if I want to. I did that several times this last month. I haven’t been able to do that in a million years so it’s strange to be able to plan these fun things.
It is stranger still to seldom ever need a nap, but to finally be able to feel completely rested on the occasions that I do indulge in one. It’s odd to walk with joints that don’t pop, swell and ache. It’s phenomenal to be able to sit on someone’s hard floor and visit without it flaring my joint pain. (I always felt guilty needing to be seated in a chair when others wondered why I was so rude for sitting.) It’s strange to be able to run a little bit and not get winded.
Last week I spent 65 minutes walking at a fast pace on the treadmill and I never tired. I actually felt energized by the exertion. It is nice to begin to ease through days without feeling as if I’m pushing no matter how much I set out to do. I feel as if I’m tapped into a slow, steady source of energy and I just don’t tire the way I used to. When I do tire, I recover with one or two nights’ sleep.
It’s really nice to feel a bit friskier, especially in this summer heat. The downside is that I just don’t want to think about ill health anymore. I want to walk. I want to run. I want to drink in life. I want to tackle things that I haven’t had the focus or energy to accomplish. I want to do anything and everything that is in no way shape or form related to this disease.
I used to study anything and everything related to Lyme disease because I sensed it was my only way of finding a path out of despair and disease. This was almost a second job for me. Now I find myself thinking that stuff is interesting, but on some level I just don’t care anymore because I sense it’s just not that important.
The MP seems to be making sure that my body is going to be able to handle this and all it’s co infections without my needing to know how or why. That is a freedom that I cannot describe.
I sense that this is not too good to be true, but I don’t yet have the hard data to share with others, so I feel that my time is best spent making up for lost time and just enjoying life. It’s good just to enjoy life again. Perhaps enjoying life is my best and highest purpose right now.
Maybe as time goes by I will enter a few 5 and 10Ks wearing an “MP Beats Bb” or “MP for Lyme” shirt in lime green. The sensitivity to light will be a bigger deterring factor for me than the distance. Maybe no one else will notice or know what it means, but I’ll know and it will be a celebration of my health, as well as a reminder that it was worth going through the doubts and the darkness to get to the other side.
I don’t intend to preach to patients or to try and convert doubters and disbelievers. I don’t know that this answer will be right for everyone, but I have no doubts that this is a real answer for me and I’m going to enjoy my new life with every ounce of my being. Right now, that is more than enough.
This was so long long, but this month is my one year anniversary and I cannot believe how good things look from this point forward. I am glad I set a realistic time frame for my own personal evaluation of this protocol. Actually, I should state that more clearly: I'm glad that I had the time frame in which to do this because it is not a quick fix.
I am also very grateful that I have had concerned family members around me who were insistent in pointing out that I was indeed making progress, even when I was lost in the depression and doubts. The journal helped, but their reminders and testimonials helped even more.
I am also really glad that I had sworn to myself that I would give the MP a full 18 months before I quit. I had so many doubts along the way and there were times when I was really tempted to give up before I started getting to the good stuff.
At this point, it seems that I have definitely made some real progress. For instance, our air conditioner died in our 98-100F (36 C) degree weather this holiday weekend. Gotta love our Texas heat! The thought of our high daytime temperatures got me out of bed and on top of the chores before 6am, so I won’t have to struggle with them when it’s really hot.
So far, I’m holding up much better than I expected I would. I’m not sure I could have done this 6 months ago, and I know that I couldn’t have done it during or even after my highest point on Rocephin.
Back then I still had the toxic, stinging, burning sweat. I kid you not, when it didn’t physically hurt to sweat, it made for a miserable time of pricklies and stinging afterwards. Now I get on the treadmill or do the yard, and my sweat actually feels healthy. My thermo-regulating abilities are much improved now, and temperature extremes don’t seem to wipe me out.
Ah, if only I could go out in the sun for activities... I guess that’s worth waiting for. I think it will all come in time, maybe on my next MP birthday or the one after that. Of course, I will probably always continue to cover up to protect myself.
LST
Many thanks and happy 4th to all!
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LST: F age 40 Began MP 7-26-04 Meds: Thyroid, 40mg Benicar qid, minocin qod + phase-2 med Dx: neuro-borreliosis (chronic, late-stage Lyme disease) confirmed by several labs, with co-infections (Bartonella, mycoplasma, Babesia); 6 yrs prior abx (17mo IV)
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Aussie Barb
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Posted: Mon Sep 11th, 2006 10:56 |
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Ames wrote: CFS/FMS positive advances
Jul 11th, 2005
I'll mention a few of the positive advances I feel I have made so far on the MP.
1. I think my hormones have done some serious re-balancing. I stopped my hormone and thyroid supplements completely. Nevertheless, last month I got my period naturally for the first time in 3 years.
2. My sleep meds continue to KNOCK ME OUT, although I have been able to cut back as well and stop one completely. Maybe my body is actually remembering some slight idea of what it is like to go to sleep naturally.
3. My food sensitivities and digestion problems are GONE, as far as I can tell. Before I couldn't touch dairy. Now I eat yogurt, cheese, cream cheese in large amounts. It's something I couldn't even imagine before.
4. When I started the MP I was on 4 strong antifungal drugs. I was really nervous to stop them, but I did. I have absolutely no signs of Candida returning, which to me comes close to a small miracle.
5. When I'm not herxing I can do a small amount of exercise, using muscles, and actually recover in what feels like a normal amount of time rather than 3 weeks. I do about a 30 min yoga routine on good days. The next day, no reprecussions-this NEVER happened in the past.
6. My insane craving for carbohydrates and sweets are still practically gone from the moment I started taking Benicar until now. Very nice.
7. My light sensitivity has improved tremendously. I would almost go as far to say that I am fine in all indoor light. When I started, I couldn't stand the small amount of light that came in the top of my glasses from one 30 watt bulb. Also, even normal lighting gave me hyper D symptoms. Now I've been out a few times with no hyper D symptoms.
Amy
see more
Ames: spontaneity and better endurance - yay!
AMES re MP A CFS patient's experience with the Marshall Protocol
Ames: Listing improvements: I am thrilled
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Amy: 03/05: 1,25D-32 25D-40 (therapeutic probe) Benicar 04/29/05: 20mg q3hrs, Mino: 100mg q48hrs, Phase 2: 06/05/05. Age 23. CFS/FMS, osteopenia Severe symptoms started around 2003. Klonepin, Gabitril, Neurontin for sleep, probiotics
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Aussie Barb
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Posted: Mon Sep 11th, 2006 11:02 |
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Guss Wilkinson wrote: re Insomnia!
Jul 19th, 2005
I thought that I would put finger to keyboard and write about, what I consider to be, absolutely and by far the nastiest symptom, for me, of this horrible and heinous disease.
Insomnia!
For as long as I can remember, it has always taken me a while to fall asleep. My parents attributed it to a very active imagination. My brain seemed to have needed a while to process events of the day, upcoming events and even just to work through spontaneous thoughts as they occurred before it finally decided to switch off into the land of nod. Even as a kid, when sharing a room with my brother, I marvelled at how he fell asleep as soon as his head hit the pillow.
I must have had the bugs even then, as I had psoriasis – even if it was fairly mild as a kid.
I have always had a pretty full-on life – lots of energy, lots of enthusiasm and lots of fun. I always took on responsibility; was always the person to arrange to socialise and I was never ever bored.
Nothing changed in that respect as I got older. I married at the age of 21; I continued to learn and educate and ended up with good jobs (an Optometrist back then) and I performed always to the best of my ability.
Then one Sunday evening, after a team building weekend with my work, back in 1989 (I was 26 years old then) – I went to bed. I was exhausted.
But my brain went through its normal process of contemplating things as usual – and it didn’t stop. I started to get a little concerned by about 4:00 AM as I knew I had a full day at work the next day. And then the alarm clock went off and I knew that I had not had a wink of sleep. I felt awful, but I shrugged it off as a strange occurrence; showered and got through a day of work.
On Monday evening, I told my wife that I was going to have an early night as I hadn’t slept. And, hey, guess what…same again. Alarm clock went, up, showered and off to work – decidedly frayed around the edges.
That night, I thought…right!! Time to share a bottle of wine with Helena and then I’ll have no problem. I went to bed, more than exhausted, but relaxed from the wine. But my damned brain wouldn’t rest. Alarm clock went – not a wink of sleep under my belt; had a shower and off to work, basically on autopilot.
It was Wednesday evening…this time, I was going to tackle it with Gin – and I did it with style. I went to bed and the bed span! Did I get to sleep – the hell I did! I had this horrible buzzing sensation in my head all the next and I found it very hard to focus on anything at work.
Next night, no booze – relaxation techniques (I was as tense as piano wire). No good – I looked at my wife snoring next to me and wondered if something was seriously wrong with me – I was feeling very desperate – had I gone mental? I took a couple of pain killers for the buzzing in my head – but really it was in the hope that they would somehow knock me out. Nope! The alarm clock went and I smashed it with a right hook that sent it crashing against the wall, rendering it back into its atomic state. Helena was a bit startled and suggested that I take a day off and go to the doctor.
The doctor told me that I must have gotten myself out of rhythm and prescribed some sleeping pills. I was desperate and asked him if he was sure that they would work. He was and assured me that what I was going through was very common…but I asked him “what if they don’t work?” He said, “Take another.” What if they still don’t work? “Take a third!” He must have thought I was a fruitcake!!
My appointment was in the morning and I promised myself that I wouldn’t take the pills until it was time for bed. I wanted to get back into a normal rhythm.
That evening, at 7:00 PM I took a pill and went to bed. I waited 20-minutes and nothing happened. My head was still buzzing. I took a second pill and waited another 15-minutes. Nothing happened and I was getting very very scared – I just couldn’t take another sleepless night. I took a third pill and waited 5-minutes – nothing. I got up and joined my wife in the kitchen. She was eating cheese and biscuits and I told her with tears streaming down my face that the pills were useless.
She told me to sit down and have some cheese and biscuits with her – she made one for me and I suddenly fell asleep face down into the garlic cheese. She hooked her arms under my armpits and dragged me off to bed – I slept for 18-hours.
From that night onwards, it was very rare that I got a full night’s uninterrupted sleep. I actually started to really fear my bed and bed-time as I never knew how it would turn out. On a bad night, I would not get a wink but mostly I would seem to fall asleep between one and four hours before I was due to get up again. If I fell asleep early, I would usually wake up again a couple of hours later. If the phone ever rang once I had fallen asleep; that was it – I knew that I would be awake all night.
The strange thing is that I felt that I would never have any problem falling asleep at any other time but bed-time. Falling asleep on the sofa during a film was not a problem – but I would always wake up. I could even power nap at lunchtimes! The doctors all thought it was psychological – maybe it was.
It was a very special kind of torture lying there, clear awake, knowing that I had a full packed day the next day – one that would require my full concentration. I couldn’t let people down – not at work, and not at any of my other pass-time activities.
But I learned to cope – I learned to function well on the four to five hours of sleep that I managed to scrape together. If I couldn’t fall asleep within a couple of hours, I would get up and do some study until I started to nod off over my keyboard and then drag myself off to bed – usually successfully. This was my strategy for many years and I managed to get myself a second degree, a post graduate diploma and a master’s out of it, studying part-time. I would avoid all sleep medication but would take 5mg of Valium if I had something extra important I had to do the next day.
This was my reality until I started the MP in 2003. It was then that everything changed. All of a sudden, I could fall asleep immediately after going to bed and it would be a full uninterrupted eight or nine hours sleep – every time. I truly felt like a new person, and it was blissful! Oh, sure, I would have the odd herxy interruptions but nothing major. At first I didn’t trust it – it was too good to be true – I was sure the insomnia would return. But it has now been 20-months of good regular sleep and I believe that it is for keeps.
I know that everybody reacts differently to MP, but this is how I have reacted and I wonder now how I ever coped. I get tired these days when I don’t get my 8-hours.
Give me back my coughing; give me back my breathlessness; give me back my memory problems; even give me back my kidney stones - anything rather than letting my Insomnia return. Thank you MP!" <<< .......
ADD PS: 29th July 05:
I read a really good article about insomnia written in Swedish. It likened falling asleep to catching a train – a train that takes you to the land of sleep…the sleep train.
For normal people, the train stops at the station and waits for the passenger to board it – for insomniacs, the train arrives and leaves so fast, that if you are not there at exactly the right time, and if you are not fast enough to board it – you miss it. You have to hang around and wait for the next one – you never know when it will arrive, and sometimes it just doesn’t come. This is why, they say, that establishing a routine that you strictly adhere to before bed (your journey to the station) is very important.
My only reservation to this analogy is that, in my case, the train didn’t always stick to the time-table – and, very often, even if I did catch the train, the ride would only last a couple of hours. I did like the analogy though.<<
Guss My MP experience
Guss doing well
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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Shamutooth replied:
Guss, kind of scary how you describe your insomnia, because I can relate to it so well. I have spent countless nights staring at the clock only to fall asleep at 4 or 5 and have to wake at 6. It is a hellish nightmare to have to live this way.Anything even slightly important the next day was enough to to set my mind racing in circles and guaranty a sleepless night.
MP has helped me dramatically also. I still get the occasional sleepless night, but it is such a blessing to be able to fall asleep without worried thoughts bouncing around in my head; and to get deep, deep restful sleep.I remember having discussions with my wife about how, since my late teen years,I would get about 1 night per year of deep restful sleep.Now I get them regularly.
I own a home building business that has really prospered in this real eatate boom, and it is just mind boggling that I have been able to run it successfully being sick and sleep deprived for nearly 2 decades.It is much easier to build a house these last few months, not to mention the mental focus I can give to some of my other passions;trading stocks and futures markets, and (most importantly) my wife and children. Sam
see
previous update
Sam MCS Insomnia
__________________
SAM: MCS CFS IBS,insomnia,anxiety,depression,started Doxy July'04, MP Sept. 04; Benicar 40mg 3/day; Phase 2 started 2/2/05
_____________________________________
June 7th 2005 Dr Marshall wrote:
Healing is subtle, and not something which is easy for us to explain.
It involves endurance, strength, and quality of rest/sleep. It is profound and unexpected change 
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Aussie Barb
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Posted: Mon Sep 11th, 2006 11:45 |
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Tobi wrote: LISTEN TO THIS! echocardiogram shows no abnormality whatever! I want to let flow a little of my complicated feelings about years of illness and mixed reactions about fabulous outcomes I've had this week.
Those of you who have been reading my posts will know that I have had some tests done, the last of which being today.
Now I will report exactly as things occurred, so excuse me if I am longwinded.
On Friday I had an echocardiogram. Fridays test shows no abnormality whatever - this was rechecked over a number of minutes. The radiographer said "It is most unusual for things to move in this direction, it usually deteriorates"
Tobi
and ....
I want to let flow a little of my complicated feelings about years of illness and mixed reactions about fabulous outcomes I've had this week. I am astounded how a human being (me) is able to survive such a long, discouraging, helpless existence. I don't claim the monopoly - we all know this - I've lost my friends - partly by their volition and largely by mine. Friendship needs energy and the ability to enter into conversation about real-life issues, which now count only as trivia. I think how my friends must feel abandoned by me. I truly don't care where they went to dinner, where they picnicked last week, or what dress they're having made for their son's wedding. I want to care, I just can't find it within me.
I feel diminished and robbed of much needed energy when I'm told - "you really need to find a good neurologist, and stop messing around - you know this is probably MS".
I have decided from today, that no energy goes into defending my treatment. No more energy goes into describing my symptoms or treatment. I am going to draw in. Very serious business ahead that is not the material of speculation, advice, comment.
I don't have any energy to spare. No more "too much information" . My husband of 35 years is totally with me in ways I always knew but that have stunned me this week. Such kindess, gentleness, practical help and "I'm with you". No words. I'm sure he didn't anticipate this.
We think we can "pass as normal". I'm done with that. I'm going to do all and everything I have to do to get well.
THank you my friends for going along with me and listening to news and rejoicing with me - news that irritates and annoys most. Let me learn a good lesson from this.
Tobi
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TOBI: CFS,Rickettsia Conoori-,HHV6,Ureaplasma(all 3 culture,PCR) 25D 16.4ng/ml,1.25D 26pg/ml.Ratio 1,3 Blood probably NOT frozen Benicar 9/18/04 Mino 100mg 10/18/04 Phase 2 01/26/05
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Aussie Barb
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Posted: Mon Sep 11th, 2006 11:50 |
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R.Bartley: Improving health on the Marshall Protocol. The corporate health plan administrators alone, should be beating a path to Dr. Marshall's doorstep, asking how best to make it a part of their corporate benefit plans...
 here:
Jul 23rd, 2005
I combined the recommended escalation letter (re medco) with my own testimony and forwarded it to my company's plan administrator. If nothing else, a few more people may become aware of the efficacy of the MP...dollar for dollar, the MP is a bargain! What I spend on on the RX's and blood tests on the MP is a pittance compared to all the bizarre medical tests, cat scans, and pain masking drugs I've received in the past. I think of the thousands of people worldwide who aren't able to realize their full potential, due to their TH1 disease. The corporate health plan administrators alone, should be beating a path to Dr. Marshall's doorstep, asking how best to make it a part of their corporate benefit plans...I can see it now, listed right above Weight Watchers! 
After suffering from a variety of undiagnosed chronic inflammatory symptoms, chronic fatigue, and depression for years, I was formally diagnosed with sarcoidosis in May 2003 through the biopsy of an enlarged lymphnode in my chest. The long term prognosis for sarcoidosis patients is grim, and my overall health and well being continued to decline. Historically, only the chronic symptoms of sarcoidosis are treated to provide some relief to the patient. I sought out these treatments through my pulmonologist and family physician, but realized after being scheduled for one more unnecessary CT, and the offer of narcotic pain relievers (both of which I declined), that I was going to have to take control of my health care if I was going to survive this ordeal.
In December 2004, while researching additional treatment options for sarcoidosis, my wife happened upon information regarding the Marshall Protocol. We researched the details and case histories of this protocol for a month, and in January 2005 I made the recommended life-style changes for diet and elimination of sun exposure. Within 2 months, I experienced symptomatic relief of some of my chronic pain. I then sought out a local physician for consultation, who had been treating other sarcoidosis patients with the Marshall Protocol with excellent results. Under my physician's care, I could then begin following the full protocol required for the cure.
Even during the sometimes difficult healing process, my wife continues to remind me that she hasn't seen me this well in years, and she is correct. I've never been the type of employee to take a 'sick day' when I could be at work, even if less productive. I now know and feel like I will be an effective and high-performing employee for as long as I choose to be. I am nearing the completion of Phase 1 of the Marshall Protocol, and will be advancing on to Phase 2, with the introduction of additional antibiotics. Benicar is a critical pharmaceutical component of the Marshall Protocol, and unfortunately there are no formulary substitutes. Until there are, I will need to continue to purchase Benicar until my disease is cured, once and for all.
___________________
Rick: Sarc/Diag'03/Lymphnds,joints,muscle inflam,tinnitus,varicose veins,edema,neck pain,fatigue,GERD,deprssn/ Meds:Nexium 40MG,Benicar 40MG 8hrs 05/25, 07/08 mino. 75mg/No Vit.D diet/NoIRs/6/22/05 D.25=28, D1,25=53
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Aussie Barb
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Posted: Mon Sep 11th, 2006 11:52 |
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Debbie wrote: Phase 2. when i am not herxing i feel stronger and filled with more energy than ever before. the white candida coating on my tongue is completely gone. this is progress. although i still have a long way to go and a lot more herxing to go, this is all encouraging. deb Jul 27th, 2005
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DEB: pcrlyme+.d12571.d2531 .mp4/16/05.benicar20q3hrs,noirglasses,
nosun, noDfood. celexa. 4/23 minoqod. 5/5quer 5/30mp. ph2.6/29 d125-41d25-26
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Posted: Mon Sep 11th, 2006 12:03 |
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DNStog wrote: Yesterday I made a list of improvements since being on MP which are listed and categorized as follows:
Aug 16th, 2005
~ ON BENICAR ALONE, THE FOLLOWING NEUROPATHY CHANGES OCCURED:
Stumbling, Atrophy: GONE
Light headedness, Brain fog: GONE
Falls and fear of falling: CEASED
Balance: NORMAL (can walk down steps w/o holding railing}
Handwriting: NORMAL
Tightening of Achilles tendons: GONE
Arthralgia: GONE
Paresthesia: GONE
Neck Pain: GONE
Sciatic-like Pain in left leg: GONE
Concentration: BACK
Decision Making Ability: BACK
IMPROVEMENTS PHASE I ANTIBIOTICS ADDED:
~Periodontal Disease: GONE per recent dental exam" gums look great"
~ Granulomas: subcutaneous in both upper arms due to return in May '05 - GONE
~ Granulomas (subcutaneous) in both feet: GONE
~ Lung granuloma: DISAPPEARING (all symptoms milder than before MP)
~ Weight: STABILIZED
~ Neuropathy symptoms: some return with less severity and very short duration during the change of doses and types of antibiotics
~ Raynauds Syndrome: attacks are less frequent and shorter in duration
~ Skin Sarcoids: itchy, weeping – disappearing – several months (some GONE)
~ Mood swings: improved in duration and intensity
~ Seasonal Rhino-sinusitis: markedly shorter in duration and intensity
IMPROVEMENT PHASE II, 2ND ANTIBIOTIC ADDED:
~ Insomnia: GONE
~ Sleepiness: GONE
~ Fatigue and strength: levels are up significantly and duration is longer
~ Carbohydrates cravings: dissipating
~ Dryness, burning and light sensitivity of eyes is remarkably less severe
~ Ocular pressure: both eyes improved for past several months
~ Hoarseness in the morning: GONE, after 41 years
As Barney says, "Hang on, we will make it."
Donna, still cruising on Phase II
Added July 2007: Phase III
I spent several years and purchased numerous types of shoes trying to find inner padding to lessen the "ouchie" of walking.  My feet stopped hurting during the Benicar only stage.
Hoarseness welcomed me every day upon my awakening for over 40 years...it left during the Mino only stage.
April 2008:
UVEITIS: I had my yearly eye exam and after a rather comprehensive check, was told "there is not any sign of Uveitis or Iritis and your occular pressure is 14 in each eye...the lowest it's been in years and years and years." I am so thrilled!!!
Trevor and ARF staff...I will never be able to thank you enough. Cruising Donna
DNStog / Donna Phase 3
___________________
Donna: Sarcoidosis, skin, jts, pulm, neur/ RaySyn/ uveitis/ hypoth/ sinusitis/ 65lb gain: trigly-108,D25-20,D1,25-D 40 Aug05; Beni 40Q6h 12/04; MP2 4/27 abx chg 7/8; Prevacid Q48; Loritab; Synthr75mcg; Q 2Xd, MT&Prb
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Aussie Barb
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Posted: Mon Sep 11th, 2006 15:15 |
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Lilly wrote: CFIDS Progress, Weight Loss.
Oct 22nd, 2005
RE: My MP. I moved and couldn't find a doc right away but found one finally and restarted the MP at Phase 1. It is going along with very little reaction, so far. I am at 75mg mino and will go up to 100mg tomorrow. Before stopping I was about ready to go to Phase 3, having done Phase 2 successfully. After stopping I kept up the lifestyle, without the meds.
BTW, I had the most marvellous 6 weeks in 10 years while I was off the MP, due, I think, to how successful is has been for me. I am eager to complete the whole MP. I think it is just, maybe, possible that I will be able to get off disability and work again. I lost 20 pounds, due to MP, too, I think. Feels good. Endocrine rebalancing, I'm sure.
____________________
Lilly: CFIDS since 1982 disabled since 1989/ Start MP July04 / Oct04 25D - 44; 1,25D - 43/ BeniQ6H/ Phase 2 completed - now Repeating Ph1 because moving etc / Prozac Wellbutrin Trazadone
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Aussie Barb
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Posted: Mon Sep 11th, 2006 15:21 |
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Betsy G wrote:
Oct 24th, 2005
Everything is going OK. I ended up having about 1 1/2-2 days of little to no pain. Most notable was I could move my head/neck freely. It's been at least 10 years since I have been able to move my neck like that. This was such a surprise; I just had fun moving my head back and forth The neck has tightened up a bit since then but not too painful. I couldn't get over how easily my head could turn, how freely, like a well-greased joint. I could move my head without my torso following. Such a strange feeling; one that I didn't even recall. Isn't that amazing? Guess I am running on a bit here but this is just so remarkable to me. I had totally forgotten what it feels like to be able to move my head side-to-side. I have lost that movement at this time but am convinced it will come back.
Thank you, Trevor and all--The MP is truly a blessing! and your time and efforts a gift of a new life!!
____________________
Betsy: Dec 03 Pulm sarc by biopsy Muscle joint skin| Wellbutrin Estradiol Vit E| 10/04=ACE42| 10/15/04 1,25/1,25D= 33/40| 10/16/04 Ben40mgQ6 2/13/05| Pred 40mg/No Pred 2/27/05| 7/1/05 25,D/1,25D= 16/27| Mino, NoIRs, avoid D/Sun. 5/25 100mg Mino. 6/27 Phase 2. Phase 3.
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Aussie Barb
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Posted: Mon Sep 11th, 2006 15:26 |
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PatrickBurke wrote: I really am counting my blessings for finding Dr Marshall's sarcinfo.com and thus the MP. I consider myself very lucky to have had a relatively early Sarcoidosis diagnosis, and finding the MP before this disease totally ravaged my body. Oct 24th, 2005
It would have been even nicer of course if I had had a Borreliosis diagnosis 24 years ago, but that's water under the bridge now. I look forward not backwards.
I forget who but someone once called the internet "the great leveller" (referring to equality of information not death). Dr Marshall is certainly doing some levelling with it here. One of the "clinchers" for me starting the MP was the quality and professionalism of the support given by this website. My heartfelt thanks go out to all the great staff who make this possible.
I have re read my last post and I realise that I made it sound as though I am getting my eyes blasted with bright light all the time at work. That is not the case. I have a great boss who is very supportive and indulges all of my MP light restrictions. I have wallpapered my office windows and have no lights in there at all except for my (very turned down) twin monitor PC (I have some great tweaks for lowering the light emissions). I wear my noirs and a baseball cap all the time to cover the gaps at the top. I have insulated my radiator to keep in the IR and I have even blacked out a window in one of the toilet cubicles. It is quite rare that I have to take off my NoIRs but I am a perfectionist and simply don't like compromising the MP (and my health) at all. I also don't like having to compromise my job but it has to take second place. It is my work that I am hoping will benefit from the new lenses not the MP.
They sometimes jovially call me "Drac" at work but they have all seen me in the past doubled up with stomach pain and struggling to breath. And they all see me now improving rapidly. They know that I am getting better.
Take care all,
Drac
add Dec 15th, 2005 ...........I will also have to continue with phase 2 for longer to see if the muscle herx continues. All herx is good herx no matter what phase you happen to be in.
PS I almost forgot to mention the consultant pulmonologist has discharged me. He says that my sarcoidosis lung involvment is totally gone and he can do no more for me. I am now left with just my GP and what is left of any systemic involvement.
Thanks, thanks and more thanks to the team for all your hard work. In over 20 years of being ill this is the only place that I have found some real help that works.
see also
PatrickBurke: return to Life
PatrickBurke list of improvements to my health since the MP
____________________
Pat: Pulmonary Sarcoidosis dx 5/04; No D tests; Avoiding D/light+noirs since 6/04; Benicar 40mg q6h; Mino q48h; abx2+3.
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Aussie Barb
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Posted: Mon Sep 11th, 2006 15:33 |
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Julia wrote: My Story of MP Twenty months on, I’m steadily getting better. Oct 26th, 2005
When I was first diagnosed with sarcoidosis 2½ years ago, my main problem was uveitis in my eyes. When four courses of steroid drops only provided temporary relief and my sight was getting rapidly worse, I started to do some internet research.
What I discovered amazed me. Other sarc sufferers described symptoms of health troubles I had had for many years, without realising there might be an underlying cause linking them all.
The support groups didn’t hold out much hope of permanent recovery however. They seemed to be full of hurting people desperately trying to encourage each other through the agonies of the standard steroid treatments. A frequent cry was, “My doctor says my test results are now okay; why do I still feel so awful?”
http://www.sarcinfo.com was the exception. Here I learned of a biomedical researcher, Trevor Marshall PhD, who believed he had cured himself of sarc. The theory that it was a bacterial infection seemed to make sense. He had experimented with different antibiotics with some measure of success, notably when using the two-day pulsing regime that Thomas McPherson Brown had used for Rheumatoid Arthritis.
The breakthrough came when Marshall introduced the use of an Angiotensin Receptor Blocker (ARB) (Olmesartan/Benicar), which appeared to potentiate the antibiotics and help the immune system to fight the hidden bacteria.
There were enough people trying out his treatment and excitedly reporting positive results to make me think it was worth further investigation. I soon decided that becoming a guinea-pig for the Marshall Protocol held less risk than the only alternative my endocrinologist could offer, that I should do nothing until I was bad enough (in his eyes!) to need steroids. There were no costs involved with the MP, as advice is freely given on the website, and the medications are prescribed by your own doctor.
My endocrinologist read Marshall’s research papers, but felt that the MP was too risky and untried. (But he did encourage me to try reducing vitamin D and keeping out of the sun, as my kidneys were in danger of packing up with hypercalcaemia. This worked dramatically within two weeks.) My GP read them and decided that the ARB Olmesartan was too risky at the high dosage required by the MP. However, he was willing to give me the first antibiotic, minocycline, as it’s regarded as harmless enough to prescribe for teenagers with acne.
The first few weeks on low-dose minocycline every other day were just amazing. My eyes began to heal, and other symptoms began to resolve. When I went back to my doctor he took one look at my beaming face and said with a smile, “I suppose you want the ARB now?” How thankful I am for his open-mindedness!
Twenty months on, I’m steadily getting better. The treatment is no picnic. As the bacteria are killed, they release their toxins into the bloodstream, causing an exacerbation of symptoms known as the Jarisch-Herxheimer reaction (herx). The dose of the antibiotics has to be regulated so that this effect is not disabling. This means that the MP takes a long time – some have been on it three years now, and while able to live a normal life, are still ‘cleaning up’ the remaining bacteria.
The list of symptoms I’ve had, and the progress on the MP:
uveitis gone
fatigue much less frequent
arthritis & swelling in one ankle not yet resolved
muscle cramps (legs, abdomen, hands) almost gone
limb & joint pains almost gone
insomnia gone
restless legs somewhat less frequent
tennis elbow gone
carpal tunnel syndrome much less frequent
sweats gone
cough almost gone
dry mouth gone
tinnitus gone
numbness & nerve pains gone
eczema went & came back
hay fever gone
swollen glands gone
nose bleeds almost gone
dust mite allergy gone
The loss of my annual misery with hay fever was an unexpected bonus! A few months ago I lost all my lifelong atopic eczema as well, but it has come back a bit – probably just with the ‘herx’.
Julia 
____________________
Julia: Sarc dx Spring '03. No D tests. Light/Vit D restriction 8/03, Mino 2/04, +Benicar 5/04. Phase 2 from 8/04, Phase 3 from 11/04. Q from 6/05. Benicar 4x40.
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Aussie Barb
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Posted: Mon Sep 11th, 2006 15:37 |
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Wytnez wrote: Progress. I am so happy. no wheezing in 12 minute Presentation: Oct 27th, 2005
Hello MP family,
I have another great milestone to report. I am very happy about this. Tuesday in a leadership meeting I had to do a 12 minute presentation on our record retention program. Of course I was very nervous speaking with the spectra shields on in front of the leaders ( CEO, COO, CFO and nursing directors etc ) but the reason I was nervous was because I didn't want to start wheezing.
I thought "man I have not been wheezing that much at all and this is a lot of talking so I hope that I can make it". And not only did I make it I got a great compliment from the CEO today stating that it was a awesome presentation! The I.T director complimented my presentation as well and the Business Process Director.
I am so happy. Not one time did I wheeze during this presentation nor did I get out of breath when saying long sentences. I feel so good. Literally. My breathing is so much better than it was last year about this time. In fact, it is getting better every day. I have been diligent in avoiding the sun and protecting my eyes and I haven't had a MP vacation ever and I think it is paying off for me. I just wanted to share that with you all and I hope that this testimony will help someone who is having doubts. Hang in there you will see results.
Happy MPing.
Saj
and December 11th 2005: Beginning Phase 3
I am about to start p3 tomorrow. I am excited to do some HOST cleaning. P2 was not easy but it was doable. Thank goodness you can control the amount of herxing you get by following the protocol to the T and listening to your body.
My symptoms are still wheezing but it is waaaayyy better than when I first began this protocol. I no longer hear that wheezy whistly sound when I take a breath in just to say a word. I continue to work everyday sometimes too long of days but that is the nature of my job sometimes. I continue to avoid the sunlight/bright lights, and watch my D intake. I live in these darn Noirs. I am not going to know what to do when it comes time to give them up. Don't get me wrong I can't wait for that day but I have worn them for so long that they have become a part of me.
My sleep is still good. I have had some nights where I woke up and couldn't get back to sleep because of the wheezing but that extra Benicar at 20mg would take care of that. My energy is still good. I rest when needed and try to get plenty of sleep.
It will be 1 year in January since starting the protocol. And I can say with the upmost honesty, that I am so much better than last year when I was diagnosed. I will have my D levels tested this coming wednesday and I am hoping to see some good positive results. But as far as my symptoms go, I am getting better and better every day. I hope this encourages you all to keep on keeping on.
This is a curative therapy so you have to purpose it in your heart to be in it for the long haul. We are all in this together whether it seems like it or not. And those of us who are almost to cure want to be there for those of you just starting out. If any of you needs to PM me for encouragement or just to chat, please do so. I would love to hear from you.
January 2007:
I feel like I am moving more air these days. I feel like the lymphnodes are getting smaller because that cloggy feeling is not so clogged up anymore.
The low back pain is gone. I am eating less and moving around more. Working more that is for sure.
It seems with each cycle, my symptoms increase and then they get better, some are even gone. I like that.
Happy MPing.
saj
see also:
Wytnez 2 year Anniversary - Phase 3 update
____________________
Saj: sarc lungs,1,25D=32,D25=10,1/24 phase I, phase II 5/2 100mg mino + 2nd antibiotic + beni q6h, 8/29 125D 33, 25D < 7 Phase III
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Aussie Barb
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Posted: Mon Sep 11th, 2006 15:44 |
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Ms Dale wrote @ sarcinfo: If a person were to ask me what was the most important aspect of the last three years...I would tell them "ATTITUDE" Nov 11th, 2005
I have been making up quality time with my family that I have missed for many many years...
This month (Nov 2005) is a celebration of 3 years since getting my first Rx to start the Marshall Protocol!
The road has been the best one traveled EVER in my history with Sarcoidosis and treatments of old.
I am doing well and wish to express to everyone that the return of health and quality of life on the Marshall Protocol is amazing!
Some of you new to this site and the MP, may think...3 years?
Yes - 3 years - and think of it this way....
Either you submit yourself to a 'lifetime' of illness and this disease progressing ( believe me it does progress ) - or you decide to... find a doctor who will treat you with the MP, maintain a positive attitude and get through periods of Herx - ask questions and receive help with the MP meds to make the Protocol work for you, moving forward with commitment and fortitude - and discover a feeling of Health that you have forgotten ever existed for you!
If a person were to ask me what was the most important aspect of the last three years...I would tell them "ATTITUDE"
You will/may have days when it is challenging - think to yourself -
struggle - juggle - keep moving forward" and you will get there!!!
My wish is for everyone afflicted with the disease of Sarcoidosis - to get to the level of health and non-symptomatic life I am experiencing today!!
sincerely,
Ms Dale
Ms Dale true miracle of healing
Ms Dale re her MP Journey
Ms Dale re progress on MP managing Family commitments
: Pics How Do You Define a Hero a pdf with pics of Ms Dale. to print.
: Pics The Many Faces of Recovery pics of Ms Dale, Meg, Belinda, Lowelle
__________________
Sarcoidosis: MP Nov 2002
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Aussie Barb
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Posted: Mon Sep 11th, 2006 15:49 |
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Carole wrote: History and Improvements... Nov 13th, 2005
February 3, 2004 - Began Marshall Protocol
My first testimonial on 2/28/04 at SarcInfo.com:
SarcInfo has given my life new direction! My search began six weeks ago to find answers to my chronic and acute maladies following an ER visit in December 2003 for extreme leg pain and inflammation, which ultimately lasted seven weeks. With an abnormal chest x-ray and blood test results leading to additional CT scans, a PET scan, and a bone marrow test, this website helped me in confirming what I had been living with for a lifetime!
My symptoms throughout the years have involved prolonged fatigue; unexplained rashes and recently extreme reactions to mosquito bites; intense itching; loss of hair and weight; breathing problems; sinusitis; bronchitis; palpitations; tachycardia; PVC's; elevated blood pressure; hypothyroidism and goiter; migraines; muscle, bone, and joint pain; swollen salivary glands; blurred vision and loss of vision; edema around eyes and in extremities; irritable bowel and polyps; vertigo; bursitis; tendonitis; fungal infections; and sleep problems. I have had many surgeries, including the removal of a pituitary tumor; suffered from Epstein-Barr and mono; fibromyalgia (confirmed at the Mayo Clinic); have had a positive ANA blood test for lupus; and have recently been diagnosed with osteoporosis and severe reverse absorption upon having a root canal. Ironically, through all of these problems, I have led a very active personal and professional life, being a teacher of 32 years.
With timely responses and support from Trevor, Meg, Belinda, and Pippit, I began my plight to encourage my internist, oncologist, surgeon, and pulmonologist to consider the possibility of sarcoidosis through the research that I found within this website. Even though my elevated D-hormone and ACE levels were convincing, the oncologist insisted that I have the mediastinoscopy to ensure that I did not have lymphoma, since a February CT scan revealed increased lymphadenopathy, as well as slight compression of the trachea and central bronchi.
Well, now I can happily say that the "Marshall Protocol" has given my life new direction! Today I received the results from the third CT scan since I began the protocol: "Significant interval improvement with decrease in the mediastinal and hilar lymphadenopathy. Resolution of the right perihilar atelectasis or infiltrates." It was reported that the largest nodes now only measure 13mm.
-I no longer have nosebleeds from nasal sores,
-no longer have chronic headaches/migraines, and
-no longer have swelling, bloating,
-or general muscle/joint pain, except for pain behind my knees.
-My heart symptoms have been nearly eliminated, and
-my thyroid function must be improving according to the recent blood test.
-My hair is not falling out, and
-my blood pressure has gone from 180+/115 to 90-115/50-70.
-My sinus problems have disappeared, and
-my sense of smell has returned.
-I do not have rashes and
-do not have severe reactions to insect bites.
-My teeth are not as sensitive, and
-my balance has improved.
-My ears do not "ring," and
-the bouts with blurred vision have decreased.
-Finally, my legs are getting stronger.
My herx usually consists of throat pressure, behind-the-knee pain, scattered muscle pain, hip and leg "bone" pain, and generalized itching. The palm lesions are still visible, and more lesions seem to be appearing on my face. I am still plagued with insomnia. (Maybe the Synthroid reduction today to 100 mcg. will help. I'm to have another thyroid test in six weeks.) I avoid the sun and food with D. I no longer take any supplements and try to reduce foods with folic acid/folate.
Words cannot express my heartfelt appreciation to Trevor and the moderators for their dedication and perseverance toward helping others. My prayers have been answered, and I have been truly blessed.
With sincere gratefulness,
Carole
see also:
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
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Carole: PWC 50+ yrs; 20+: CFS, FM, Pituitary, Thyroid, IBS, Cardiac, OA, Migraines; +ANA; Osteoporosis; 2/04 Mediastinoscopy~Sarc; (1/04, 7/04, 1/05, 7/05) 1,25: 85(wks w/no D), 50, 25, 40; 25-D: 41, 33.48, 22.56, 20.48; ACE: 68, 45, 37, 43; Resolved Chest CT +
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Aussie Barb
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Posted: Mon Sep 11th, 2006 15:53 |
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CJ wrote re: Success requires change to outmoded ways of thinking. Nov 16th, 2005
I think we all look back and see things that set off light bulbs in our minds - in regards to the past. I do believe we are stronger than we can begin to understand. I have been diagnosed w/ sarc for 15 years and I have been ill since age 18( going on 25 years) I went from doc to doc with no relief and finally completely gave up and lived with my sick body. No one would have wanted to hear that I was sick...because I was managing. Managing to care for husband, Children, home and garden, community involvement. Managed to lose my steroid weight over and over and seem to always be put together hair done, make-up on.
The last time I was on steroids I built a Beautiful Christmas float with 7,000 lights for the local Fantasy of lights parade- BY MYSELF!!! It was gorgeous if I say so myself It's probably what kept me from harming myself that winter as I endured my worst steroid induced depression ever. Would anyone have ever believed I was such a state? No. I knew but, at that point I was just doing what I could to stay productive and sane. I look back at my picture taken next to my float, Santa hat on, face roundand ready to pop, my eyes so beady you could barely see them. I remember that when I touched my face, it was so fat and swollen, I could not feel bone anywhere.
I remember that there is no cure out there for me...out there. Just more of the same nightmare. I Know what I know...and no one will ever tell me differently.
Productivity has slipped farther and farther away as the years have passed. Life in general had become one huge effort after another, and I wasn't always able to manage. I was getting by and then I wasn't... It took 4 days to put up my christmas tree last year. I slept most of Christmas day. Managed to open gifts and get dinner ready. I began to rely upon my 20 year old daughter like an assistant( thank God I had her) I couldn't keep anything straight in my head, dates, appointments...you name it. She still says I'm abnormally forgetful and she worries. I assure her I will improve.
I speak to my doctor of feeling debilitated and disabled. He says "we don't consider you disabled until you have lost 50% if your lung capacity"( or was it function?) I didn't even reply to this. All I could think was Who are YOU to tell me how disabled I am !! Or that I should be content with any level of disability!!I sure as hell am not going to get that BAD!!. I define my illness myself. No one will tell me differently.
I behaved for all these years and did what I was told... and became all the more ill because of it. No more of that.
My sister, who is the person in the family with the best medical understanding - ( or so it has always SEEMED Let me know that she really thought I was grasping at straws with this protocol. I already knew because, she used to ask all kinds of questions trying to trip me up somehow. I always had an answer. She just recently admitted she now believes in my decision, simply because she hears such a huge difference in me over the phone. She, by the way will not give up smoking to save her health. All I can think is if it were only that simple... (I'm smoke free 9 years)
We are ill, and we have respect for ourselves, our minds and our bodies. We ARE doing ALL THAT WE can to heal. Even though there are people out there who's words and actions would stop weaker folks in their tracks, we percervere. We don't have a choice. We are Strong.
I ran into a Major Bacterial die off roughly one week after starting Beni. Bad enough that it had me ready to dump the whole thing. Thankfully, through my fear I could hear a voice of reason saying to trust my decision and hang on. Not to mention Trevor's letting me know I had to change my way of thinking if I was going to get make it through this. It was a major break through for me and my largest hurdle, thus far, thank goodness. Hang on... the ride may get bumpy, but it's worth it!
Wishing you GOOD HEALTH!
Send them (cwd) back to Hell is a perfect sentiment!!
CJ
February 2007:
Good news to report. In the past several years going out in the winter air has led to SOB / use of inhalers ( which did little...even when used before going out)
With the temps being well below zero here in Michigan recently , it occurred to me that I wasn't suffering much. So I have purposely breathed heavily through my mouth when walking to/from my car. ( in below zero temps) I found it DID NOT DISTRESS MY LUNGS. No Coughing or shortness of breath, no need for inhaler. Even when sitting in my frozen car afterward. This is very telling for me because It had gotten to the point of cold air being so hard to handle, it caused quite a bit of anxiety. I am happy for this sign of healing. Will be glad to share the info with my pulmonologist in a few weeks.
SOB now really only comes from movement/exercise. ( NOT that I exercise...I do not)
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CJ: DX pulm sarc 6/91 w/ bronc. Asthma Avoiding D& sun NoIRs.MP 5/27/05 BenicarQ8H/ now Phase III
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Aussie Barb
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Posted: Mon Sep 11th, 2006 15:55 |
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DrVikki wrote: re MP and LYME with co-infection: I have been thrilled with the MP to date.
Nov 17th, 2005: EVERYTHING the MP web board said to expect - has been my experience. Everybody's feedback has helped me to identify what I've been going through - from the new hot flashes, chills, body odor, and other symptoms I had not previously had. I have more faith in the MP than anything I've tried in the last 12 years. I thank you so much.
I HAVE moved on to phase 2.
Again, what the MP said to expect has come to pass so far. I'm in the beginning stages, but it's so nice to be excited about the herxing and the days of feeling even better in between.
Vikki ...
see also DrVikki: - going out in the world
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Vikki: Lyme/co-infec diag Oct04 /misdiag 16yrs /back & neck pain /diges prob /headaches /fatigue /tachycard /tinnitis /Nov04 1,25D=65 25D=26 /light avoid /Noirs /Beni July17 Q6H /100 Mino/ Phase 2 11/7/05, now Phase 3.
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Aussie Barb
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Posted: Mon Sep 11th, 2006 16:00 |
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MicB3x wrote: The quicker you start the sooner you will start healing. I wish I had the year back that I spent researching it to death. Nov 23rd, 2005
But there are a lot of questions to ask yourself about yourself. It's not the quick fix that we as humans have gotten used to or often demand, but it really is the only game in town.
I am responding very well to the MP medications, even better than I could have imagined.
Starting Phase 2: Slept fairly well last night. My Head / Brain fog is clear this morning. Breathing is and has been very good. No or minimal neck/back pain today. No chest pressure or pain or heart anomalies. Ringing in the ears is minimal. Nose is still runny. I feel good today!
see Summary of Phase 1: by Mic.. (a recommended read)
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Pulm,LymphDx1977/NoPred/NoD+Bolle100=12/04
Remeron7.5mg/Diazepam10mg/NitesOnly
BW1/05=ace59,25hyd=22.9/1,25d=40/EBV4.49
Sleep,Fatigue,MentFog,SwlLmphs,Ben20mgQ6H11/28/05
Phase2=01/01/06
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Aussie Barb
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Posted: Mon Sep 11th, 2006 16:03 |
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CFSGirl wrote: CFS/FMS/MCS Noting Improvements Nov 27th, 2005
1. I walk around the house at a faster pace than I have in 16 years. Before I walked as slow or slower than someone 90 years old. It is not totally "normal" yet, but a definate improvement.
2. Tonight while on Internet, noticed there was a lessening of the constant band of tightness around my diaphram/rib cage area. Instead of being a big thick wide band like a belt squeezing me to death, there were areas of tightness and then areas where there were no tightness. This has not happened in the last 16 years either.
3. Tonight I feel more calm and clear headed, able to focus than I have felt in a long time also. I have been waiting for months to be able to focus enough to go through the new Medicare Rx Program and just could not do it. It seemed too overwhelming, but I was able to go through most of what I need to be able to make a decision.
What a change from yesterday when I was a total mental/emotional mess. It makes me laugh!
Forgot to mention, another minor change. I had to drive to an unfamiliar place tonight by myself, and of course in the dark which makes it more difficult to find a place. I did get a little lost, but made it to my destination. The positive change is that usually, since CFS, this would have given me major anxiety. I had none whatsoever. I didn't get afraid or worried. It was great. The only "worry" is that it is hard to see dark objects or people walking across the street or riding bikes alongside the road at night with the glasses. Even as I am typing this, I am not having my usual frustration at myself when I misspell words, or type things backwards or with incorrect grammar. If it happens, oh well, big whoop. No biggee. Its nice not to feel irritated at myself.
Add January 18th 05:
I just wanted to do a quick post to remind myself of two more symptoms that have gone away (hopefully for good.) One is that I had to stop drinking water out of water bottle a couple years ago because when the water hit the back of my throat, I would choke, so I had started drinking with a straw out of a glass or water bottle. I realized a couple days ago that I had been drinking out of the water bottle for a couple weeks now, and have not had a choking attack from this. I had looked at this as a neurological type symptom, and think it was.
Also, for the last aprox. 16 years, my right hand would have times when it visibly trembled or shook, and even when it was looked like it wasn't shaking, if you put a piece of paper flat on top of it, it was shaking.
-Today I noticed that my hand wasn't shaking or having any mild tremble at all. I showed it to a friend who had seen this before and he was surprised to me my hand so steady.
Yeah! A few more little things to keep me going and give me hope.
When I have the energy, I need to look at my list of symptoms I had written a year ago, it is at least a page long, and see if any other things I don't remember now, are gone. It is so neat to start writing about symptoms that are gone, instead of always adding new ones to the list!
CFSgirl, still slow and steady.
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CFSGirl: 1989 CFS/FMS/MCS, Sudden Onset, Disabled since 1990. Esophogial Spasms, Horrific Spine pain. Symptoms,too many to list.10/14/05 started D diet & sun avoid. 10/20/05 Blood tests taken 10/24/05 rec'd NoIR glasses. Current Meds, Neurontin, Klonopin, Bentyl
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