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patrickburke
Moderator
| Joined: | Mon Jul 12th, 2004 |
| Location: | United Kingdom |
| Posts: | 448 |
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Posted: Tue Nov 25th, 2008 04:56 |
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Oct 24th, 2005
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.
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.
May 2nd, 2006 wrote: I have compiled a list of improvements to my health since the MP took over my life. I am really picking up, I cannot remember the last time I got in from work and dropped on the couch exhausted like I used to. The MP is totally amazing.
May.04 Dx sarcoid
Jun.04 Avoiding D and light BIG response. Refused steroids.
7.Nov.04 Pulsed Mino only
1.May.05 Phase 1 Mino + Benicar
They are short descriptions but when you consider that I spent seven years at the ENT clinic before losing my tonsils and one year of exhaustive tests just on my digestive system (x rays, endoscopies, biopsies, ultrasound, barium meals etc etc) then things are put into perspective.
This is not the full list.
Improvements so far.
My chest x-rays are now clear and I have been discharged by the consultant pulmonologist.(The biggie  )
Itching scalp with red "spots". Gone.
Painful hair follicles (when combing) on my head and face (when shaving). Gone.
Sinus congestion and runny nose. Gone.
Advancing and bleeding gums with gum disease. Gone.
Persistent dry mouth. Gone.
Persistent sore throat. Gone.
Difficulty swallowing food. Gone.
Frozen left shoulder. Almost gone.
Great difficulty breathing. Gone.
Sensation of chest pressure. Almost gone.
Persistent cough. Gone.
Persistent abdominal pain (hospitalised with suspected appendicitis once). Gone.
IBS linked to the above including pain, bloating, gas (especially in the morning) etc. Gone.
Persistent back pain. Almost gone.
Suspected developing spondylosis. Almost gone. Posture improving rapidly.
Sore and tender finger nails. Gone.
Fordyce spots on lips. Fading.
Itching skin on back, arms and legs. Gone.
Profuse sweating. Gone.
Cramps in legs at night. Gone.
Life shattering insomnia. Gone.
Stiff ankles and feet. Gone.
Painful heels. Gone.
Painful great toes. Gone.
Sore knees. Greatly improved.
EM rash on feet. Gone.
Soul destroying brain fog and no concentration. Greatly improved.
Memory. Greatly improved.
Stuttering and slurred speech. Gone.
Poor balance. Greatly improved.
Dizziness. Greatly improved.
Tinnitus. Greatly improved.
Phew, thats about it.
May 6th, 2006: I am very busy at work and have even had some indoor daylight exposure whilst working today.
I am still covered up, wearing Noirs and I upped the Benicar to 40mg q4h. But light just is not having the same devastating effect on me anymore . Yes it took its toll and gave me flares in my knees (which is awesome as now I am sure they will heal or at least improve too) both sides of my ribs (which is also awesome) and even made me a little dizzy and weak for a moment or two. But these effects are minor now and I recovered very quickly. My skin seems unaffected by artificial light now.
I have noticed over the last two months that I am really picking up, I cannot remember the last time I got in from work and dropped on the couch exhausted like I used to.
The MP is totally amazing.
Take care all.
September 2006:
-My upper spine is creaking, cracking and is noticeably straighter now than it was even a few months ago.
-I have superb range of motion in both shoulders now.
Someone asked me the other day if I had taken up bodybuilding  (I wish) I think that is a result of my new straighter spine and correspondingly better posture.
Sep 28th, 2006:
From previously writing everything slowly in block capitals. This week I suddenly realised that I could write joined up handwriting properly again.
I also found myself running/striding up some stairs without even thinking about it
My light sensitivity is still variable but always steadily lessening.
My physical strength is returning without any exercise whatsoever which I find quite amazing. I performed an unexpected feat of strength the other day when I braced myself to try and tear apart some tough plastic wrapping, my arms flew apart as it ripped like a tissue, I almost knocked someone behind me over LOL.
I can feel my stomach muscles firming up. Awesome!!
My short term memory is still steadily improving.
Take care all.
PS Thanks to the team for helping me to achieve the all of the above .
January 2007:
I can notice some marked improvements in my health now.
:The insomnia IP that had been plaguing me for some time is gone and I am now sleeping like a log and waking up earlier and feeling fully refreshed, which for me is a minor miracle that I cannot overstate.
:My digestive system is great also, and I can now comfortably eat bread again which was one of the worst things for my supposed IBS/food intolerance, which is a great step back to normality.
:The cracking sternum and chest pressure have also subsided to a very comfortable level too.
:I am noticing less pain and crunching in my knees on the good days .
:Oh yes and the lip spots are fading away on my lower lip which is in an almost constant state of peeling/chapping.
All in all I am still making good noticeable progress and am very pleased with the results to say the least. I have had some very encouraging glimpses of what I know is to come .
February 2007:
This evening I took my poor, dear, neglected daughter clothes shopping . I did not wear Noirs and was OK, only one shop with very bright lights bothered me . I feel as though my light sensitivity which was once so extreme, even by MP standards, is finally drawing to an end I love it. I don't know how long it will take to completely vanish but I can wait, it's started that's the main thing. It's worth noting that prior to the MP I could not stand much shopping as I always used to get terrible lower back ache, I never realised that it was the lights causing that effect.
Last night me and my one last good friend friend who has stood by me through all of this went out for a beer, we had a great time and as we walked into town I felt so good that I ran, yes I was running like a big kid, through the snow LOL, I felt like I could have run for some time but started to get some sternum twinging so had to stop  . Still not bad for someone who used to get out of breath talking.
I get the feeling that my lips will eventually clear. There is also still the right rib IP which is almost gone now on a good day but quite noticeable on a bad day.
My legs are getting some pounding at times but slowly my painful knees seem to be healing which amazes me as they have hurt since I was about 14.
All in all, superb progress.
February 2007:
I will have been on Phase Three for 1 year in 2 weeks time.
I had a moment of madness on Friday night and had fish 'n' chips for my tea that is the first meal that I have eaten with any known "D" since my very earliest MP days, after I had devoured it (it tasted delicious LOL) I sat back and felt awful, waiting for the after effects to kick in.....the struggling to breath etc . But NOTHING happened. NOTHING at all . I won't be repeating the experiment in the near future but it showed a big change in my body's metabolism.
I reported some time ago that I could now lay on my back in bed due to reduced chest pressure well now I am finding myself waking up laying on my stomach which is totally amazing as I have not been able to breath in that position for many years.
Feb 2007:
I am also getting more of an urge to do some exercise and have done 5 very easy minutes on a cycling machine tonight and a few of the inclined press ups which help to crack my spine back into place. I will see how long this urge lasts  . I will never force myself to exercise.
Over the last couple of weeks almost everyone (literally) who sees me has been looking at me strangely and asking what has changed about me . I think its the loosing fat/water effect and my generally better posture and higher energy level and spirit . If only they knew what we know LOLOL some do of course
March 2007:
I have felt pretty good and even got home from work, ran some errands, did some jobs and did some more exercises I am still going strong as I type and its 22.50 over here I was up at 7.00. I did 15 minutes on the exercise bike, some inclined press ups, some sit ups and some stretches.
My spine and right ribs are still crackling and at last the right rib/side "stiffness" is starting to fade .
Oh, I have also been getting some new IP creeping in every now and again over these last few weeks, a new neuro IP..........euphoria..........I like this one .
April 2007:
The last time I saw my Opthalmologist he remarked that my eyes were in incredibly good condition, he said it several times.
I am now three days into my third year on th MP .
May 2007 return to Life.
The urge to exercise is getting quite strong again but I am resisting as I have been expending my spare energy on my house and garden . I have hired a landscape gardener to do all the heavy, two years worth, of catching up in the jungle though. I would not be able to cope with enough sun or the strain at the moment , but I will one day . I can wait, I can feel it's on its way.
I am still getting herx in my abdomen, legs, head (including some of that damn emotional ), upper thorax (front and rear) and lower front ribs. There is quite a lot of cracking going on in my upper spine still but boy do I feel mobile up there on a good day. Also my knees are getting less and less painful I can now comfortably climb steps three at a time and put my whole body weight on them, just like when I was young.
Last weekend I went a little crazy and drove from my home in the "midlands" out into the sticks of woolly W Wales to fetch a little sheep dog pup for my long suffering daughter  . He is beautiful and very clever, she deserved a special treat after 2 years of putting up with me on the MP LOLOL.
It was a ten hour round trip and I did it EASY I think it was the first time since Lord knows when that I could get out of a car after a long journey and not have stiff legs. It was very sunny day but I covered up, wore K cream and took extra Benicar just in case. The biggest help though was due to the fact that I changed my car to one with a/c. Any long standing members will know that I have a problem with heat/IR and I learned last summer when I had a/c fitted in my office that it helps me a lot. Bizarrely, I can remember as a very young boy wondering why everyone else like being warm when I liked being cool .
I have been having some very welcome periods of "brain clarity".
Take care all.
July 2007 No More Glasses
I am prompted to write in a little greater detail about how my suddenly decreased light sensitivity has affected me. It's good to read of other similar progress.
I too am erring on the side of caution which is why I am keeping all my No 35 Noirs. As I have been wearing contact lenses since Christmas I have not used the fitovers anyway so I may as well give them away if anyone in the UK wants them. I have had no takers yet though. I used to get literally blinded by even a tiny flash of light especially fluorescents, now I don't get anything like that .
I have noticed that if I have a long day in full daylight I do start to get some slight mental issues mainly jumbling my words up a little, consequently I am still avoiding as much light as I can when I can without interfering with my new lit up lifestyle . Eg my office at work is still blacked out from sunlight with only tungsten incandescent lighting. I still have my blinds and heavy curtains closed at home unless I am expecting a visitor. But I don't mind any of this at all. I can go wherever I want and do whatever I want whenever I want to . If my words get a little jumbled at the end of a long enjoyable day of that then so be it. It's easily tolerable.
In the past I have been incapacitated and blinded for 30 mins or more by a flash of light through the side of my Noirs and brought to my knees, almost fainting, with dizziness if I wasn't wearing a strong enough pair.
Take care all.
October 07:
Just for the record. I still cover up, I am still wary of daylight even though I can handle as much as I reasonably need to. I still wear a hat. My office is still boarded up and lit by tungsten even though fluorescents don't bother me any more. My PC monitors are still set to lowish light even though I don't feel the need. But I have not had to wear my Noirs once since the 23rd June 2007 . What a great day that was .
Within the last few days I have noticed that I can recall some telephone numbers again, I lost this ability many years ago when the brain fog started setting in.
June 2008
I had some Corning GlareCutter prescription lenses which for me were better with CRT's, and fluorescents than any Noir which I believe was due to better blue filtration.
However, I never really tried them outside as I did not have faith in their ability to filter out the IR in daylight. But then I hardly ever went out in the daylight anyway so it wasn't much of an issue.
Personally, remembering that I seemed at the time to have extreme light sensitivity, I could not tolerate even artificial light or heat (IR) on my skin and I had to ensure that whilst I was laid on my couch at night exhausted in the dark watching my dimmed down TV with my 10% Noirs I also had to ensure for example that I was wearing socks (and cover my hands) as I would feel the muscle twitching starting in my feet and then all the other light exposure sx's would follow. I wore 10% Noirs so that I could lower the brightness of the TV more and so lower my whole body light exposure while still being able to just see the TV. The same applies to computer monitors and lighting of course.........indoors at night 10% Noirs = lower light levels falling on your skin than if you are using 2%.
Hang in there, I don't wear any eye protection at all now and often have to turn the lights up . But it took 26 months .
Russ replies:
Patrick, I also notice that covering up my skin helps even for exposure to non-natural light like the computer screen and flourescents in stores. Crazy. I know the sensitivity will drop eventually. That will be a day to celebrate.
P Bear, did you find halogen lights to be worse than flourescents or both equally bad?
The halogens were much worse for me. ~ P.B.
August 2007: What recovery feels like.
The main problem that I have at the moment is coming to terms with getting so much better so suddenly. I know that sounds daft but it's true . E.G. last night I went out jogging, yes, proper jogging with no pain in my joints or SOB with my little Welsh Sheepdog skipping around me . I now feel great most of the time. I had the old "spring" in my step. I was walk/jogging 50/50 and surprised myself. It felt great .
Carol, like you I am amazed and maybe even shocked at how ill I have been and for so long and that includes all the heavy IP from the MP. And I knew all along that I was ill with a slow growing infection, even when the docs kept telling me I was fine. But I don't think I ever really thought that I would be able to feel as good as I thought I should. Now I feel that eventually I will be able to reach that ideal. There is still more work to be done. I have felt anger etc too and am still in the process of sorting everything out in my mind so I will post more later.
I am still catching up on all my domestic jobs, setting my house in order if you like. I see things now that look wrong that looked perfectly fine whilst I was ill . My whole outlook on the world has changed.
My brains word processing power is increasing rapidly, I no longer get the old "wrong letter" dyslexia type syndrome and my spelling is improving as is my speech, speed of thought and recollection.
One thing I know is that the MP works in months not days so I will have to wait longer to see where this takes me.
I have been jogging again tonight, my lungs and heart are fine, it's my legs that are weak, I will train them up.
Oh, I almost forgot, my light sensitivity was tested today. It was very sunny and I cleaned and washed my car, tidied my yard etc etc. I was covered with hat but still no need for Noirs. I have felt no major repercussions so far just a little weakness.
October 07:
Just for the record. I still cover up, I am still wary of daylight even though I can handle as much as I reasonably need to. I still wear a hat. My office is still boarded up and lit by tungsten even though fluorescents don't bother me any more. My PC monitors are still set to lowish light even though I don't feel the need. But I have not had to wear my Noirs once since the 23rd June 2007 . What a great day that was .
Within the last few days I have noticed that I can recall some telephone numbers again, I lost this ability many years ago when the brain fog started setting in.
April 2008:
I measured my height the other day and I am now over 1/2 an inch taller than I used to be . I am pretty sure that my height increase is due to straightening and possibly other "repairing" of my spine.
June 2008:
The MP cleared my Sarc xrays within a few months. Xrays aren't imaginary. I had a check up xray last week and a chest examination. I was told that my lungs sounded "absolutely fantastic" ! When I asked the radiologist if there was any adenopathy or shadowing on my lungs He gave me very puzzled look and said "urr no there's nothing like that, but not everything shows up on xray you know" I told Him that I had had Sarc and then He did a higher resolution xray which still showed nothing.........yep it's still gone !
I have gone from hardly being able to hold a conversation for lack of breath to going running with a 16 month old Welsh Sheepdog. And being 1/2" taller that I have ever been in my life as my spine is straightening up and my whole body is rebuilding itself stronger!
Herx now is just a slight inconvenience, a cracking neck or a rumbling tummy for example just little gripes that anyone could have. It is fading away and I have no reason not to believe that it will totally fade away....one day, when I am fully healed .
Tests: Cholesterol, sugar, thyroid, CBC and liver (elevated prior to MP) all perfect chest X-rays "no adenopathy, scarring or adhesions, normal" ahh, I love the MP LOLOL
September 2008:
Comments. My kidney IP is still steadily lessening. Most of my tests are now normal. IE Creatinine, "bone biochemistry" (whatever that is exactly), LFT's, CRP, ESR, full blood count, ACE, PTH, immunoglobulins, urine blood and protein, Bence Jones protein, ANA and ANCA..... ha ha ha. And my kidneys imaged "normal" on an ultrasound scan too.......I love it .
Just my eGFR left to improve now which is still "a little lower than expected"
My lungs and liver are now healed and my kidneys will be next. I am kind of wondering if there might be some fireworks as my kidneys start to take control of things but then again perhaps I am watching them right now.
Take care all.
Oct08:
Prior to the MP I had a pretty bad frozen left shoulder and restricted movement in my neck which limited how far I could turn my head to the left. I used to struggle to put my clothes on and driving was a pain with gear changing (left hand in the UK) and head turning.
I cannot remember how far I was into the MP when it all vanished, year one I think, but vanish it did .
So many other problems vanish with the MP too as your body heals.
Nov 2008:
Thanks Prof M , for all of your hard work.
MP Meds. Currently Benicar 40mg q4-6h. No ABX day 232
Non MP Meds this week. None.
Light Exposure this week. A lot of indoor light.
Symptoms. Still crackling and cracking in my upper spine mainly right at the top at the back of my head. Also a lot of crackling in my jaw and ears and I can sometimes feel pressure around my temples and forehead. The leg stiffness is developing into all over joint/skeleton aching. Mainly in my hands/arms and feet/legs including knees and hips. I have also had a little bit of lung IP with a very small amount of phlegm.
Comments. As my kidneys are now well on the way to being fully healed I am finding that I am now starting to get even more energy. Working 10.5 hours per day in normal lighting and still not being too tired to cook etc when I get home.
I am still constantly amazed at how much healing is happening to my body. And I wonder where and when it will end? And how I will then feel?
Take care all.
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I know that it is hard to accept that what is deemed to be "normal" blood work is not normal for an active MPer.
I may sound "gung ho" but I gave up "listening" to blood work a long time ago.
I have had pain and discomfort (IP) in just about every organ in my body! My sarc infected lungs are now clear, my enlarged, diseased liver is now clear, my stage 4 kidneys are now clear etc etc. All of my blood tests and imaging are now "normal"
What more can I say? Don't look too hard at the blood tests! they will only scare you. They almost did me LOL.
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I used to have a lot of fatigue, in fact looking back it was ubiquitous that it was my main symptom . I also had a lot of back muscle aches and pains which eventually turned into crackling my spine slowly straightened up so much that I now stand 1/2 an inch taller that I ever have in my life .
The shoulder IP also cured my frozen shoulder and neck, the MP is slow but awesome.
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Prior to my sarc diagnosis I had no illness for around 10 years! My body had zero immune response but I was getting sick in ways that my docs could not understand.
Now my body is killing bugs everywhere and is showing all the signs of doing so, ie. I have an immune response of whatever kind! My body is working again . My lungs, liver and kidneys have healed and today I did 10 hours hard labour without stopping.
There was a time during my early years of the MP that I had lots of cold sores. I haven't had one now for a long time.
For me it's GREAT to see an immune response .
I hope that you can understand what I am trying to say.........IP is GOOD.
Take care,
Pat
Nov 08: Its time for an update.
MP Meds. no abx from 2/08.
Currently Benicar 40mg q4-6h. No ABX day 276
Non MP Meds this week. None.
Light Exposure this week. I don't measure it any more But I still cover up and avoid sun when I can as I know its good for me .
Symptoms. All stable, I have been having some coughing lately mainly in the mornings which is productive after a while. This is very deep IP, I can tell. I still have the good old crackling spine which is now in my neck mainly. But I can feel the ip moving around my scalp and head in general. Every morning now my lips are peeling again and are white and sticky with dead skin. Any old timers here will remember that I used to get this. But now at last the fordyce spots are truly starting to vanish but so far only on my lower lip. When my skin is healed I hope it will mark something pretty substantial. Those fordyce spots were my first noticeable symptom!
Comments. I used to consume large amounts of food but I now hardly feel the need to eat anything I guess that's because I am not feeding the bugs any more . I have lost around 21lb over several months without even thinking about it but I could still do with loosing around another 12 or so . My once awesome memory is starting to return !!!!!!!!!!! I really, really, really love that bit .
I sometimes forget my benicar now (yes I know I just said my memory was better LOL) as I don't feel the need for it all the time, I always took my benicar as required within the guidelines previously but I am finding now that my need for it has plunged . I am happy though LOL.
Pat.
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Sarcoidosis/lungs; Ph1 May05; Ph2 Jun05; Ph3 Dec05; No ABX 2/08; No D tests; covered since 6/04; Noirs off 6/07; Min light avoidance| Pat's Story|
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Vicki SA
Member in Phase 3
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Posted: Tue Nov 25th, 2008 14:41 |
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Thanks Pat for a very encouraging post!
I am nearly at the 3 year mark and am amazed at how much of my life I am getting back. With ME/CFS I was able to do very little activity and needed lots of recovering after. Now I am able to do things everyday! 
Just recently I have noticed that I can remember numbers again and I notice that you mention that along the way too. It is so nice to know that my brain is healing.
I’m on my way, uh-huh, uh-huh!
Cheerio Vicki
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ME/CFS 2000, Splenectomy, 8/05 - 1,25D51,25D16.5, Ph1 12/05, Ph3 1/07, Zoton 30mg, 2008 - cover with light r/t Work 3/7, NoIRs, hat, cover well, invis. zinc for outside, low lux home, Sept08 25D - 8
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patrickburke
Moderator
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Posted: Fri Dec 19th, 2008 21:14 |
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Currently Benicar 40mg q6-8h. No ABX day 301
Non MP Meds this week. None.
Light Exposure this week. I don't measure it any more But I still cover up and avoid sun when I can as I know its good for me .
Symptoms. Tricky, I still have the good old crackling neck, there is very little below the neck now. I have been having fairly bad cold like sx's runny nose, some coughing up phlegm, feeling nauseous (vomited twice), itching cracking inner ears, cracking jaw, tooth ache, aching cheek bones, pressure behind my eyes strange cold rippling sensations over my scalp, some aching joints mainly elbows and knees. If I bend over my head feels as though it is inflating. peeling lips.
Comments. All the above sounds bad but it's not, it really is a pleasure to have a nice steady immune response and it is clearing my mind. The other day I had an epiphany, I felt absolutely awesome, just for one day, I felt like I could take on the world again and win, I felt unstoppable . My thoughts were crystal clear like I know they should be all the time. I know now that this is just the beginning and that with more time and healing that day will become the norm. I honestly can't wait but I'll have too LOL. This is what I have been waiting for.
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Sarcoidosis/lungs; Ph1 May05; Ph2 Jun05; Ph3 Dec05; No ABX 2/08; No D tests; covered since 6/04; Noirs off 6/07; Min light avoidance| Pat's Story|
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BARNEY
Moderator
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Posted: Sun Dec 21st, 2008 18:33 |
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Patrick,
Hope you and yours have a very Merry Christmas and a Happier New Year!!!
HANG IN THERE, WE WILL MAKE IT!!!BARNEY
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64jointsarc77skinsarc80lungsarc81asthma/migranes
95rkidneyremoved(cyst)diabetic/gallbremoved,96
totalhyst(cysts,endom)01fibro,Benicar40/20mg&xtra
as needed,stage5,
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patrickburke
Moderator
| Joined: | Mon Jul 12th, 2004 |
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Posted: Sat Jul 4th, 2009 02:09 |
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May 16th 2009
Hi all ,
I am still getting better and better and better lol.
My IP is pretty much the same as it has been for a while now but always gradually less. Crackling neck is prominent, the upper spine is hardly noticeable now. Quite a lot of abdominal IP around the liver and kidney areas still, but this is always fading, steadily.
My energy levels are so much higher now than they were even a year ago. Old timers may remember when I tried exercising (jog-walking) a year or two ago. I could do it but I didn't enjoy it and it was hard work . I decided to bide my time and wait a little longer. Well how things have changed. I can run again and I'm not at all bad LOLOL. After only three attempts I ran 1.5 miles without stopping, that's not bad for a 45 year old who hasn't run for 20 odd years is it? My "new" tender lungs burn a little sometimes with the exertion, but it's soooo different from gasping for breath whilst trying to hold a normal conversation .
My kid brother is 10 years younger than me and does karate , I left him for dead LOL.
My lungs feel great, and I mean GREAT. A long time ago I was a very good runner, maybe I will be again one day?
All you people out there, never doubt the MP, go for it with all your heart and wait and see .
But I do have lungs again, real proper lungs! trust me they are good I was running backwards etc lol.
My legs went stiff afterwards, it was so funny and painful, but I recovered totally within around 3 hours, which I know from past experience of training is way too fast to be normal and is a result of the MP. That should have taken around 2 days!!
So here I am, I can run again and recover from serious amounts of bodily stress in ridiculously short amounts of time just like I could when I was a lad.
I love the MP .
Pat.
Death to the bugs
28th June 2008:
Hi all,
Not much to report, just nice steady continuous lessening of sxs .
MP Meds. Done (start dates), m 5/05, mz 6/05, mzb 12/05, mzc 3/06, mzb 3/07, mzd 7/07, dzc 09/07, dzb 1/08, no abx 2/08.
Currently Benicar 40mg q6-8h. No ABX day 519
Non MP Meds this week. None.
Light Exposure this week. I don't measure it any more But I still cover up and avoid sun the when I can as I know that its good for me . I can tolerate even being outside on a very hot and sunny day now with very little effect. In fact I have noticed that other supposed "normal" people react more than I do and upon subtle questioning I find that they have th1 .
Symptoms. Not a lot left, still some crackling in my upper neck, some occasional muscle stiffness. There is still something going on (slight discomfort) in my liver and kidney regions. Some tiredness occasionally but that could be "normal" due to the full and active life that I live. Oh I almost forgot, I have been having some moderate gut IP, loose stools, bloating etc for a few weeks now too.
Comments. Always getting better, my physical strength and stamina continue to increase steadily and I have had to tighten my belt recently, literally, as my waistline is steadily shrinking even though I am not consciously dieting. I do believe that I am eating less food though, simply because I am less hungry and have a lower appetite.
Take care all,
PS, I agree with knochen, I see this benicar only period as the clean up phase. I will keep taking benicar until I have no more recognisable sxs and then some more just to be certain.
History:
Pre MP I tried a low vitamin D diet and it hit me like an express train. My diet prior to that was high in D.
As a sarcie I didn't need to have D tests, it was all over for me, a life of ever increasing misery was my destiny.
But that was a long time ago now and things have changed .
I cut out vitamin D and restricted my sunlight exposure for 6 months, my sarc symptoms went away and much to my doctors surprise my chest xrays returned to normal. Then I started the MP and resolved many other issues.
I cannot exactly remember my xrays, but I can remember well defined bi-hilliar adenopathy and a strange cobwebby effect over the whole of the right side of my chest cavity. The adenopathy was described as "classic sarc" and when I asked about the cobwebs I was told with a shrug "that could be anything, it's not important". There was no calcification or fibrosis that I can recall seeing or being mentioned.
It's worth noting that after the 6 months of D avoidance the adenopathy had gone but the cobwebs hadn't. Last year I had a high res digital xray and it was absolutely perfect, and I mean perfect. The radiographer was so surprised that I had had sarc that he took the hi res as an extra . I had a lot of IP in previous years on the MP in and around those right ribs which included snapping, cracking and tearing sensations etc. This was obviously the "cobwebs being broken down by my activated immune system.
I would interpret what happened as this, avoiding D lessened my sarc sxs and also the adenopathy. Then years of MP therapy removed the underlying cause of my immune deficiency which IMO was bacterial biofilms "cobwebs" maybe?
Pat.
1st July
I have had a severe test of my recovery today. We are having a heatwave over here and I had to go and work on a high roof all day I was very wary and didn't know what to expect I handled it with NO PROBLEMS  he he he in fact I can honestly say that I handled it better than most of the dozen or so folks who were there too . I was wearing full length trousers and a thin long sleeved shirt but it didn't bother me at all. This is the first time since I started the MP that I have had such a day. I can remember when a few moments (seconds) in today's sun would have wiped me out for hours.
Needless to say I am rather happy .
Thanks to Prof M, Barb and everyone else here who have helped me to regain my health so far.
I do feel a bit emotional, maybe its the sun lol.
Take care all.
Pat.
3rd July
Hi all,
For those who are interested in my heatwave antics.
I had 3 days on the roof in the sun in the heatwave at up to 32 C (90 F) ambient. After 2 days I woke with increased gut IP, but tolerable, I also had a coughing attack and coughed up some phlegm for around 5 minutes. After the third day I was very tired and went to bed early, slept like a log and woke up feeling fine .
I noticed that by the third day I had seemingly acclimatised to the heat and was sweating less. I also noticed again that others were still suffering far more than me and were burning. I used no sun lotion and did not burn although my face felt slightly hot. Only last year when the IP hit my kidneys and I was at stage 4 "kidney disease" (lol) I noticed that sunlight exacerbated my kidney sxs, this year I felt no such effect. I did have a 10-15 minute episode of orthostatic hypotension on day 2 also. On days 1 and 2 I took precautionary extra benicar at q4h + some SL, day 3 I forgot about it lol and went to 6 hours.
Please note that this is not an experience that I would like to repeat nor would I have tried it voluntarily I also always had the option of going off "sick" at zero notice should I have needed it as I was only 2 miles or a phone call from home. I was never in danger. But it happened and I am cautiously pleased with the outcome. It has taken a great weight off of my shoulders and has increased my social confidence .
Never a dull moment on with the MP .
Take care all.
Edit. I also showered morning and night as (I have suspected this for some time) this can apparently wash away D metabolites from your skin before they have time to react or be absorbed via micro dialysis
14th July:
Hi all.
More about my recent light exposure.
It did increase my sx's a few days later. So, two things have changed with regard to how my body now responds to light exposure, when compared to earlier in the MP.
Any old timers here will recall how I used to react badly and very rapidly to light exposure in my early MP years. This is now no longer the case. There is now a delay of around 2-3 days before I feel an increase in sx's. Instead of around 30 seconds lol.
The second change is that the increase was tolerable.............., quite easily tolerable. I had some increases in all my current IP such as crackling upper spine, guts, knee joints, facial muscle twitching and peeling lips. Also some increased fatigue, but nothing like I used to get when I was exposed to tiny amounts of light and would be wiped out for hours.
I absolutely do feel as though D is now my main source of IP and I first began to think along those lines early last year when I was forced to start work in an environment with much more light exposure than I was used to. That exposure triggered a huge increase in IP that hammered my kidneys. I think that I had gotten rather used to having very little IP and I was rather enjoying it lol. The light exposure changed all that, it had a big effect that was similar to taking a new, very powerful abx.
I know that this is stage 5 and it has been very hard at times, this last year or so, due to various reasons, but I think (fingers crossed) that I may be on my way out of it. At least past the worst . Maybe, once occasional light exposure has no effect on me it will be time to reintroduce some abx? Or maybe I won't need any by then?
I guess I'll have to wait and see. One things for sure though I keep slowly getting better and I see everyone around me slowly getting worse .
Take care all.
PS I have forgot to mention recently that I have been having some facial muscle twitching/numbness IP. I have also noticed some improvements in my facial muscle symmetry/control. Many years ago prior to my late teens when th1 ruined my life I used to be quite aware that I had perfect control over my facial muscles eg I could wink with both eyes and "raise an eyebrow" with both eyes, my mouth and cheek muscles would follow symmetrically too. I lost that symmetry with my th1. It has now returned .
14th August 2009:
Reply to another suffering from heat and light exposure:
I've just got back from two weeks in Turkey, the hottest day was 52C (126F), which I handled without much trouble lol. The heat/light sensitivity will fade away .
Firstly, whilst I was there a few days any IP that was current got noticeably worse but not intolerable, which for me at the moment, is mainly my digestive system and my crackling upper spine.
Secondly, I also re-experienced a few old IP. Some shakiness and dizziness and a slightly nauseous feeling coupled with the good old orthostatic hypo-tension.
Thirdly, The increase in IP has carried on after the holiday and even got worse before it got better, only yesterday and today have I begun to feel as good as I did before the holiday, so it has taken 11 days for things to calm back down. I even experienced a return of some eye light sensitivity for a few minutes after over 2 years without it.
If I was in your position I would be resting in the cool and dark as much as I possibly could prior to the next trip. Whilst there I would try and discretely minimise my light exposure whilst out in the day. For example walk on the shady side of the streets and sit under the shade of the parasols whenever you can, cover as much of your skin with clothing as you can, wear a hat and some zinc oxide sun cream on the exposed bits. Those kind of little tweaks can really help. Oh and don't forget to keep as cool as you can at night (I made sure that I had air con) and shower at least morning and night as, as I have long suspected, you can apparently wash D off of your skin ! And keep your food D intake strict too so no swordfish steaks for you lady . Remember that if you keep everyone out late at night they will be getting up later in the morning too so you will then have less daylight time and more night time
I would make sure that when you get back home you get plenty of cool dark rest again until you start to feel better.
And..........if things do get too bad blame it on the food and water and go and lie down in your cool air conditioned room with the blinds closed LOL.
And.......................take plenty of benicar !!!!!!!!
Think that's about it hope that helps, and don't panic.
Pat.
P.S. it was worth it
Sept 4th 2009:
Hi all,
I've been trying to find time to write this post for a few weeks now as some years ago I promised to post about my battle with light sensitivity. I am working away from home for a while on a construction project (another miracle ) and don't have regular access to my pc .
I recently took my first holiday abroad since starting the MP. I tested myself with the UK heatwave (see the last few posts above) and as I was happy with the results I decided to give a holiday a bash.
I went to Turkey for two weeks and was surprised by how hot it was, 52C on the hottest day and that is hot, hotter than anything I have ever experienced. It was daunting but Olmetec was freely available OTC and my hotel room was deliberately air conditioned so there was no problem there . The holiday went great, and I had a great time enjoying day long activities activities such as a jeep safari, quad biking, horse riding, scuba diving, white water rafting, mud bathing etc all of which were new to me .
If I said that the sun had no effect on me I would be lying but the effect was tolerable and did not hinder me in any noticeable way. I was constantly light dodging (out of habit?) as best I could in an effort to minimise my light exposure but it was a drop in the ocean really lol. Tricks that I used were things such as walking on the shady side of the street and sitting under a sun shade whenever possible. I always wore at least a T shirt and 3/4 trousers with a hat and some good sunglasses but not Noirs as light doesn't bother my eyes any more. I used a good quality sun screen as well and never burned in fact I didn't even get a tan lol.
The negative effect of the sun exposure were obviously increased IP. All of my currently active IP and some recurrence of some old ones. My first increase was respiratory IP and I felt like I had a cold, that was followed by gut IP and some weakness, dizziness and more upper spine crackling.
I defy anyone from the UK to go there and have no effect lol so I think that I did OK .
I was slightly relieved to get home and took roughly two weeks for things to calm back down again but I know that loads more bugs are dead as a result of the holiday .
Anyway, my current IP are still the good old crackling upper spine and more and more I feel tension in my scalp and twitching facial muscles as the battle front advances around my head. I find myself scratching my scalp often and get a few small tender spots there that eventually dry up and drop off, they are reminiscent in some ways of chicken pox sores that I had when I was a child. My guts have been playing up quite a bit lately too but the loose stool effect seems to be fading away at last. I have have also been getting quite a lot of lower back ache.
All good stuff.
Take care all,
Pat.
I did have a good time,
I'm still on just Benicar, I get plenty of IP still . Light is my my main stimulus for IP now. I think that if I was in the dark and on Beni I wouldn't have anything happening .
I think that there are just a few strong pain killers etc that require a prescription over there.
Aunt Diana, I can't remember how much it was LOL I think Benicar was 74 Turkish Lira ($50/£30) for 30 x 40mg. So it wasn't cheap.
Sept 09 Summary:
I am in my fith year of the MP, my sixth year of avoiding D, my sarc x rays were deemed "normal" after just a few months of MP therapy. I have done very well, I know that and consider myself very fortunate.
I first took really ill in May 2004 and received my sarc diagnosis. I researched the disease obsessively at the highest level and by June that year I had concluded that the only expert in the world that made any sense was Dr Marshall. I knew straight away that he was on the right track and had probably cracked one of mother natures biggest secrets. It was a huge blow to hear the bad news about "herx" but I knew that I had to do it. I knew that after 10 years of zero immune response I was harbouring loads of bugs and that I had a lot of catching up to do. I knew that it would necessarily hurt. It did, I had bad IP, I had bad light sensitivity, I had bad everything but I knew that my body was at last catching up with all those intracellular bugs, killing them and healing, I knew that my immune system was working again. I have watched over these five years as all of my disease symptoms have gone into reverse.
My MP history is,
May. 04 Dx sarcoid
Jun. 04 Avoiding D and light
7. Nov.04 Pulsed M
1. May.05 Phase 1 M
21.Jun. 05 Phase 2 M+Z
25.Dec. 05 Phase 3 M+Z+B
5. Mar. 06 Phase 3 M+Z+C
8. Mar. 07 Phase 3 M+Z+B
7. Jul. 07 Phase 3 M+Z+D
26. Sep. 07 Phase 3 D+Z+C
24. Jan. 08 Phase 3 D+Z+B
13. Feb. 08 Stage 5 no abx
Every one of those combinations was a battle, a big battle.
You will see that I have been on Benicar only for over 1.5 years. I still get IP . But I am still getting better and better and better . I would like to know where this will end and how I will feel when it is all over LOL.
My best guess, realistically, based on my past experience, as too how much longer this will take is probably another two years. But that is to be totally rid of all my current IP. Maybe some new ones will appear along the way? I don't know the answer to that and I don't care at all, not one little bit, I am happy! My life, my x rays and my blood work are all normal now.
We folk here are setting the precedent for those who will follow and those who are following now. While ever Prof Marshall is here helping people like me with His web sites I will be here too.
Death to the bugs .
Pat
January 2010: posted reply to MPer:
Jo,
I have battled with quite a few antibiotics combos and am on Benicar only now and yet I still get plenty of IP. The abx are only a means of helping your immune system and obviously your immune system doesn't need much help, so like Joyful says "this is good" very good indeed you are probably further forward than you realise.
I have felt this damn disease process reverse itself, just like I have felt if advancing throughout my life. Trust me, it does go into reverse, its just that "we" are the ones that have to define how far back we can take things. Personally I feel as though I am now at the stage of reversal that was pretty much the "beginning" of my troubles. Where I go after this bout of IP is over will be new territory for me. I kind of hope that it will just end and I will be "cured" who knows?
I rise at 5.30 am, I drive nearly 70 miles to work I start at 7.30 I work until 6.00 PM and I get back home at 7.30 PM. I have a high pressure job and I love it. The driving doesn't worry me, the hours don't worry me, and I'm still getting better and better and better .
Death to the bugs I love the MP
Pat.
and Thanks Terry .
You know what? I have changed my avatar because of you. Its now one of me enjoying myself in a pedalo in the Mediterranean sea off the coast of Marmaris in Turkey last summer . I haven't worn those damn Noirs since 23rd June 2007 LOL the new avatar is how I am now . And I'm still getting better .
Go for it folks and never look back.
 to > 
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Sarcoidosis/lungs; Ph1 May05; Ph2 Jun05; Ph3 Dec05; No ABX 2/08; No D tests; covered since 6/04; Noirs off 6/07; Min light avoidance| Pat's Story|
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BARNEY
Moderator
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Posted: Sat Jul 4th, 2009 13:55 |
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Patrick,
This is a wonderful report..........there are no words to explain the exstatic feelings when we do so well.....and so very good to get our life back.
Hope your heatwave ends soon. They are miserable.
Drink plenty of water, xtra (sea) salt (regular salt is mostly chemicals) as needed, lots of rest while avoiding the sun and avoiding Vit D in your foods!!!!!
HANG IN THERE, WE WILL MAKE IT!!!BARNEY
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64jointsarc77skinsarc80lungsarc81asthma/migranes
95rkidneyremoved(cyst)diabetic/gallbremoved,96
totalhyst(cysts,endom)01fibro,Benicar40/20mg&xtra
as needed,stage5,
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Jackie from Derby UK
Member in Phase 3
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Posted: Fri Sep 11th, 2009 15:08 |
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Thank you Patrick for your very encouraging words. Sometimes it just feels as though I'm stuck in Phase 4, trying lots of abx combos, and will never get to Stage 5.
All the best
Jackie
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Sarcoidosis probably since early 1990s when I had a serious flu-type infection. Diagnosed Apr04. NoIRs Ph1 Nov05, Ph2 Jul06, Ph3 Sep06. working fulltime
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