The Marshall Protocol Study Site > PROGRESS REPORTS [members in study cohort] > Phase One Alumni Forum > Deb...my story!
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The Marshall Protocol Study Site > PROGRESS REPORTS [members in study cohort] > Phase One Alumni Forum > Deb...my story! |
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Deb Grabetz Member in Phase 3 
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It's interesting to think after all these years I am finally, finnaly at a place where I am finding healing. It angers me for all of the years I have gone without good health and struggled so, to live the "normal life" I have led, so it is very bittersweet to be in this place! It is almost unbelievable to me sometimes that I have lived the story you are about to read...Here is my story and its a long Sarcy tale: (Please bear with me as this is long but tells the perfect story of what people are living through without dx..at the end I also mention improvements I have seen already after only six months!) Allergies! Lets talk about allergies. I've always seemed sensitive to something, even as a child. My grandma thought cod liver oil was important so at 10, I was given regular doses of the stuff...ugh... Drank/ate a lot of dairy...Milk was basically crammed down our throats...Seemed to have the typical sensitivities though, not anything that anyone would perceive as an "illness". As a teenager, my periods were very heavy and filled with fatigue and as I grew older they became worse with irritability that I now would consider beyond normal. My dad always had house projects going on, remodel jobs. When I was 14 he bought a house and practically redid the entire thing..lots of old house and dust. It seemed during these projects I would have a lot of anxiety..brain didn't feel quite right. I have always had to push myself, even though I have lived a very full life, my energy levels were coming from somewhere other than my physical self! I loved sunbathing...spent my summers seeing how dark I could get and of course used baby oil as my skin was olive..I wasn't the skin type that burned. So why would I even consider sunscreen...too bad we get caught up in bad habits so young. I had also taken birth control pills for a couple of years. I married at 19 and moved to the country. At this time my "allergies" seemed to be getting worse. We had an entire 80 acre field behind our house planted in oats and the oat dust...as I had so many chest problems that year, doctors thought asthma and was put on steroid inhalers. We heated our large farmhouse with a woodstove, which I've recently learned that between the smoke and mold on any indoor wood stored inside was probably not helping my lung issues. Yet, I was young and still never made a connection that I might be really ill with "something". We gutted our 70 year old farmhouse without any type of respirators..it chills me now just thinking about it...the garbage that I've inhaled. I suffered from chronic bronchitis and constant coughing (we have video tapes of our children and the background noise is always Deb coughing, coughing). When I caught a cold, it would never go away like everyone else in my family, yet lingered until it ended up in my chest and needed antibiotics every single time to clear up. This seemed to be "relieved" when we moved and stopped burning wood. In my childbearing years, I delivered three lovely children (God's greatest gift to me) by Cesearean Section. After my last child was born I started having some very severe neck pain. At the time chalked it up to the epidural that I'd been given. But it was the kind of neck pain that would bring me to tears. This pain has literally been with me every day of my adult life, through massage, chiropractic treatment and loving family hands...Imagine my delight after taking Benicar for a few weeks and getting relief after all these years!!!! In 1990, I was having severe groin pain and went in for a hernia repair...that fall my husband and I bought a 100 year old Victorian home...I had always wanted to restore a vintage home and was I in for a surprise! We moved into the house and started once again tearing out walls, dust and mold! Well, at this point my body was at a breaking point, I had just turned 35 years old. I also remember craving at the time scallops. Was eating them once a week in addition to the renovation stress on my Sarc body....My first flare began with this sensation that I was losing my balance. It is a difficult symptom to realize at first because it is so unnerving...soon both ears were fully plugged, I had lost spacial grounding (felt like I was detached from the earth) leg tremors, loss of partial vision in my left eye, neck pain intensified, facial edema, head felt swelled, intense fatigue, memory loss, brain fog, terrible concentration, body edema, low grade fever . I could at this point only connect to moving into our dream home...we soon moved out of our house as I felt I needed to see if this would relieve my symptoms, to get away from all of the dust and renovations and chemicals. We moved into a vacant house my parents had for sale (our current home) ...so along with being so ill, my family moved again in three months time. Here we were with three young children 12, 9, and 6 and I was basically non-functioning. I also was working at a major float glass manufacturer here in Michigan and in Sales and continued to work very ill because the docs were scratching their heads. I loved my job and could not bear to lose it and luckily knew it like the back of my hand, this is how I survived through the Neuro. Looking back I have been to Haddes . We survived the second move and of course had to deal with people who thought I was crazy...I was crazy alright...crazy sick! We went to doctor after doctor, lab results coming back were iron at 5, low platelets and all these neuro symptoms that no one could put a finger on. Other than to have one internist tell me to see a shrink! Oh how I wish I could remember his name today! I finally did not have the energy to keep up this "chase" and spent my days dragging like a drowned rat. It was visible just looking at my eyes that "something was wrong". My ears were fully plugged 24/7 for the next 3 years and throbbed, I lived with constant dizziness and worked under fluorescent lights that gave me no relief...there were times I thought I could not live another day this way...but somehow I did and prayed to see my kids grow to adulthood. Chemical exposure at this point, even a squirt of Windex would put me into a tailspin, perfume at work...again, I blew all this off to allergies. When I tried allergy shots found out I was highly sensitive to mold and any attempt to take mold shots made me extremely ill. I found a well known allergist named Dr. Derrick...he was the first compassionate doctor that I had dealt with and I will remember him always! At this very same time a terrible abcess tooth popped out of nowhere..could not be saved and I still have a trophy crown as proof. I had always had near perfect teeth and seemed to have tooth problems starting also at this point. Yet all along, I felt there was something "bacterial" going on in my body that docs were missing, as antibiotics would give me a burst of wellness for a few days. At this point, I just struggled to get through each day. At 40, an aunt gave me a massage certificate for my birthday and I started going regular for massage. Within the next two years I started feeling some small relief from these horrible debilitating symptoms. By 1997, I was beginning to stay up again until 11 pm at night. It was a sign that I had "recovered"...or so I thought! Life seemed fairly good again, although I still dealt with fatigue, just not being able to keep up, exercise induced fatigue and pressure in my chest. My husband felt great after walking, me, I felt like I needed sleep and with general malaise. After my first flare in 1990, I started gaining weight..by late 90's I had put on well over 80 lbs. From a slim 145lbs to over 220. I noticed again towards the end of 2002, I was starting to feel "run down". But blew it off to teenagers, a demanding job and a very busy husband. I decided in 2003 to start a business and leave my much loved job in Sales after 26 years. (Did I mention this entire 26 years I sat near a full glass curtainwall that caught afternoon sun?) It was stressful leaving but I loved the change. At this point I actually dropped 40 lbs from being on my feet rather than behind a desk, so I thought! Could it actually have been less sun exposure? Maybe I had actually taken some stress off of my body, less sun and no fluorescent lights. But I still felt "tired" all the time. In 2004, I had the opportunity to land a job with the airlines as a flight attendant...a dream that I had since 19! I made it through a very tough three weeks of training and found a job that just totally thrilled me! I could not wait for my next trip and to fly...I love people and where can you find more people than at an airport! Jet lag surely was a problem but isn't it for "everyone"?! ...and what about all of the UV exposure, I had no idea what was happening to me. In October of 2005, I was having a lot of female trouble and my OBGYN suggested a hysterectomy due to fibroids and bleeding. During the surgery there were complications and my bladder had shifted all the way up to my belly button. I thought this was it... In the spring of flare #2, on a trip to Chicago with friends, I caught the intestinal flu and was in bed the entire four days of the trip. By summer, I had come down with a three week respiratory infection but went ahead with a trip to Alaska. Not only did we eat Halibut the whole time there but also had fish shipped home... In the fall of 2006, I was exposed to my husbands elderly uncle who had pneumonia and later MRSA. Two weeks later it was my 50th birthday and at my surprise party I was feeling ill. I thought, oh no bronchitis again..my chest was so full. My doc put me on an antibiotic and sent me home...this repeated itself three times and three more abx--until I finally asked for a chest xray...only to find I had pneumonia. OK, I had never had pneumonia but wasn't a bit worried...a week or so off work and I'd be fine... My xrays showed pneumonia cleared but something was not quite right. Christmas day I had such pain under my ribs and pressure in my chest I thought I was having a heart attack. Took myself into ER on the night of the 26th (the next day was my husbands uncles funeral) and bless the ER doc who sent me for a CAT scan to find enlarged lymph nodes. My own doc didn't find this unusual and waited another three weeks, thought from the pneumonia. I finally had enough and asked to see a lung specialist. Well for a small town guy, he picked up right away, "I think you have Sarcoidosis"...My husband and I looked at each other with "relief"! We went to the surgeon fo my biopsy and he gave us other news that it was lymphoma. Of course often misdiagnosed, we spent the whole weekend thinking cancer. Finally after my biopsy it was confirmed that I had Sarc. At this point I realized what I had been so ill with through all these years and thought I could not get through this again... Still scary! Very scary! At this point I was not getting out of bed due to fatigue. Once the Prednisone started I was also having heart problems, BP at 185/135, horrible mental problems and general weakness, weight gain, constant appetite problems, . I truly thought I was not coming out of this one... ...and then I received an email from Meg! Bless you Meg. Although you know me not, just thinking about the day you sent me hope still brings me to tears. We had an appointment with Cleveland Clinic at this point and I was ready with my MP. Not going to happen...the doc there wanted me on methoxtrate and I wanted nothing to do with it! I was already in complete despair and the only thing that truly was giving me any hope was the thought of trying the Marshall Protocol. I started MP, weaning from steroids, in April of 2007...what changes have I already seen...? since flare #2
Thank you for a real beginning this time...and yes, I'M NOT CRAZY! Along with this wonderful treatment, I am blessed to have a completely wonderful husband who stuck with me not only once but twice, through these horrible times...and that is something to be thankful for! I look forward to posting many, many, many more improvements on this journey...Bless you all...  Deb |
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Joyful Board Staff 
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You inspire me Deb! I am so happy for not just you, but for your family as well! You are an eagle and you will soar to the heights! ~Joyful~ |
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Carole Board Staff 
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Congratulations, Deb, and thanks for sharing your powerful MP story!  You've come such a long way in a very short period of time, and the good news to your great beginning is that there is more to come. Keep up the great work and embrace your extraordinary results! . . . Carole  |
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Adrianne Member in Phase 3 
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Deb, You've got me crying happy tears! Adrianne |
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Deb Grabetz Member in Phase 3
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P.S. to my Sarc story... I realized there were a few symptoms that had been occurring that I had omitted from my story....not so important for me to know, I lived them  ...but may be useful to others...so here is my P.S....I'll consider this a "Sarc-brain-bump" for forgetting all this!In early 1980's experienced a couple bouts of strep throat. One was soon after having my wisdom teeth pulled before having braces put on my teeth (at 27!) About the time that I noticed fatigue and brain fog returning before my second flare hit, also noticed my hair thinning from the top of my forehead through the crown area. Actually thought it had more to do with my age as my once long eyelashes were disappearing and eyebrows thinning out. I've since learned that this too was another symptom of a poorly functioning body. In 2002-2003, I started noticing upon waking my hips would be so stiff that I actually shuffled around the house to get going, at least 30 minutes in the morning. Now, this was very frightening as my toes would also stiffen up and cramp. I may have read somewhere that this was a symptom of MS and started wondering if this is what had plagued my body through the years. The hip thing oddly "went away" yet today I am experiencing very strong IP in my hip and sciatic area...so it didn't go far! In 1993, I had surgery on my nose as my ENT thought this would relieve some of the "ear related" symptoms that I seemed to be having. I had a deviated septum. My ENT corrected the septum and also put tubes in both my ears. During surgery he mentioned that there was a polyp in the right sinus but did not remove or biopsy (now, I'm not sure why looking back but sometimes when we're this sick we tend to not be as good of a health advocate for ourselves as is needed!) This of course helped my nose drain better but the dizziness continued to plague me. During the course of years and years of sinus trouble, I would go to my ENT both spring and fall, where he would inject the inside of my nose with steroids to help what he dx'd as allergic rhinitis. The injections helped for a few weeks but of course seemed to get worse. In addition, I experienced neck lymph swelling, which would change. Back and forth from one side to the other and sometimes both. My ankles would also swell on the side which always seemed odd but would also come and go. One very strange thing that I started noticing some time ago and have been unable to "label" was the tissue behind my legs, side of my thighs and up into my buttocks (all under the skin) had thickened almost into tiny horizontal rolls that I could run my finger over and feel. I chalked this up to gaining weight. Yet with this last flare also had one of this same type thickening appear on the left side of my rib cage (on my back under the skin). My doc thought the one on my back was calcium deposits...98% of this since being on Benicar has smoothed completely out into normal feeling tissue. This was a fairly large area of tissue that this affected. Love my Beni! Last edited on Thu Oct 25th, 2007 03:29 by Deb Grabetz |
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Deb Grabetz Member in Phase 3
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Hello to all... Deb, Modified Phase II I've had a significant change in back pain within the last two weeks both mid back and low back. It is mildy noticeable in the small of my back and what I would consider completely gone mid back. This has been plaguing me now since the pain first started April 22nd (2007) as I started weaning off of steroids and is = to...201 days! I'm seeing an increase in my stamina which has been truly affording me to do a little more socially than I've been able to do since becoming ill (almost a full year now)... along with staying covered up and protected I seem much more tolerable to outings. Focusing on a list does not put me in total despair...So far this morning I have called the docs, placed an order at a local store, made a couple of personal calls and checked all of my email, talked to my daughter on the phone and it is only 9:45a.m....small progress to some...but even three months ago this would have put me in bed for the rest of the day-- and maybe not even managed that whole listl  ...along with the fact that I had a full day yesterday...traveling to my docs who is 45 miles from my home...out to lunch with my friend and a quick trip to Michael's craft store. *Grinning from ear to ear* for a small piece of my life back!My doc has recommended lymph drain for my chest/stomach swelling..as any length of time on my feet my entire chest area swells including lower stomach. This swelling is almost immediate and totally uncomfortable...childbearing women would compare it to a term pregnancy belly...with a lot of pressure. Happy to report another "set" of good results....with still a journey ahead....  Last edited on Thu Nov 8th, 2007 17:47 by Deb Grabetz |
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eClaire Member in Phase 2 
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Deb, I am so happy to see that you've made so many improvements. Thanks for writing your full story. Although I don't have sarc (I think my mother does and I was probably on my way to that diagnosis as well), your story is one that I can relate to, as I am sure many other can as well. Claire |
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Deb Grabetz Member in Phase 3
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Hello to all...(Began Benicar w/weaning April 2007--MP as of July, 2007). Wanted to update a bit since my post of a month ago...I am in awe at how much of my mental energy is returning...It is a marvelous gift that is overpowering the rest of me...My mental energy is to my physical self, like a little grandchild running ahead of their grandparent..."Saying c'mon keep up with me!" ...and I see this as great progress from the gal who a year ago was endlessly falling asleep sitting up ---which progressed to not getting out of bed for four months... wheeeee! Yes, I'll be happy when the rest of me catches up!I've noticed a positive change in my lungs. It seems my breaths are getting deeper and the pressure is much less. Either lymph or lung related or both. I sing when I attend church almost like I used to; unlike a year ago when my voice was barely audible most of the time and breathing in would cause me to go into a coughing fit. Even a short conversation would land me in bed fatigued! As funny as this may sound to some, one of the things that seems to amaze me the most with my progress, beside the fatigue improving, is the fact that my right jaw, which is also the side that I've had such debilitating ear problems in early 1990 is so improved. For 17 years I have off and on fought with inflammation in this jaw/ear area. Heat packs, warm washcloths, massaging the area, anything to get a little relief from this very annoying symptom. My jaw today closes nicely together and the whole side of my face is almost back to normal. Every now and then I will get a twige of IP so a bit more to go but 90% better!! I'm truly learning to embrace my IP and recognize it as healing. It takes a very long time in my opinion, to mentally get to this place where we really can accept the IP and move forward through the symptoms...and I know there will still be days that I won't be luvin' it...Like now, recently it has forced me to spend most of my time on the couch nursing abdominal swelling. Yet while I did so I've wrapped gifts, sent out Christmas cards, thought up fun games for Christmas morning with my family....Something that I was unable to care about a year ago...as my brain was as flat as a pancake from this crazy disease! Looking back, I did not even understand what was happening to me....but would sit for hours, wanting to do one thing and never getting it done! So...on that note I'll sign off...There is surely a long road ahead for me ...as for many of you...but WE are the lucky ones! I read a post of Trevor's recently where he had read some posts off of an old Sarc site...where it is all about doom and gloom...and it is true. When I allow myself to I think I'm not progressing fast enough or my IP is too much for me to take another day....or I'm tired of meds (I rarely took Tylenol before this!) ...all one has to do is look up posts by those who are on other treatments to see their dismal stories...It's not pretty!Happy Holidays to all...and many blessings your way!  WELL!!!! Deb |
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Deb Grabetz Member in Phase 3
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Hello to all...(Began Benicar w/weaning April 2007--MP as of July, 2007). Wanted to update a bit since my post of a month ago...I am in awe at how much of my mental energy is returning...It is a marvelous gift that is overpowering the rest of me...My mental energy is to my physical self, like a little grandchild running ahead of their grandparent...saying, "c'mon keep up with me!" ...and I see this as great progress from the gal who a year ago was endlessly falling asleep sitting up ---which progressed to not getting out of bed for four months... wheeeee! Yes, I'll be happy when the rest of me catches up!I've noticed a positive change in my lungs. It seems my breaths are getting deeper and the pressure is much less. Either lymph or lung related or both. I sing when I attend church almost like I used to; unlike a year ago when my voice was barely audible most of the time and breathing in would cause me to go into a coughing fit. Even a short conversation would land me in bed fatigued! As funny as this may sound to some, one of the things that seems to amaze me the most with my progress, beside the fatigue improving, is the fact that my right jaw, which is also the side that I've had such debilitating ear problems in early 1990 is so improved. For 17 years I have off and on fought with inflammation in this jaw/ear area. Heat packs, warm washcloths, massaging the area, anything to get a little relief from this very annoying symptom. My jaw today closes nicely together and the whole side of my face is almost back to normal. Every now and then I will get a twige of IP so a bit more to go but 90% better!! I'm truly learning to embrace my IP and recognize it as healing. It takes a very long time in my opinion, to mentally get to this place where we really can accept the IP and move forward through the symptoms...and I know there will still be days that I won't be luvin' it...Like now, recently it has forced me to spend most of my time on the couch nursing abdominal swelling. Yet while I did so I've wrapped gifts, sent out Christmas cards, thought up fun games for Christmas morning with my family....Something that I was unable to care about a year ago...as my brain was as flat as a pancake from this crazy disease! Looking back, I did not even understand what was happening to me....but would sit for hours, wanting to do one thing and never getting it done! So...on that note I'll sign off...There is surely a long road ahead for me ...as for many of you...but WE are the lucky ones! I read a post of Trevor's recently where he had read some posts off of an old Sarc site...where it is all about doom and gloom...and it is true. When I allow myself to I think I'm not progressing fast enough or my IP is too much for me to take another day....or I'm tired of meds (I rarely took Tylenol before this!) ...all one has to do is look up posts by those who are on other treatments to see their dismal stories...It's not pretty!Happy Holidays to all...and many blessings your way! WELL!!!! DebLast edited on Fri Dec 14th, 2007 16:56 by Deb Grabetz |
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eClaire Member in Phase 2
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Deb, Your progress is so incredibly encouraging. And thanks for the reminder that many people on other treatment programs are miserable and they are NOT getting better. Sometimes it is difficult putting one foot in front of the other (or one Benicar in the mouth after the other), but we know the alternative: increasingly poor health. Thanks for the gentle kick in the behind! Claire |
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Deb Grabetz Member in Phase 3
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Hello all! A very Happy, A very Healthy New Year on its way... First of all, I'd like to respond to Claire...it is wonderful to hear that your energy is working hard Claire, to push through! I remember as I was healing with my first flare of Sarc, I could feel my energy working hard just like this, as if to compare to a spring bulb pushing through the hard earth to show its beauty. This will be us...For those of us who struggle with such debilitating fatigue...it is exhilarating when a bit of energy shows its sunny face...  Which brings me to my next point. Taken from my most recent Mod Phase II posting...Looking back...This time last year I had been struggling for six weeks and then admitted to the hospital for 24 hr observation due to my breathing problems, pneumonia, chest pressure, intense rib pain, extreme fatigue, etc. Had gone through series of heart tests and CT saw enlarged lymph. (No dx yet...) Very miserable and not even able to get out of bed for close to four months. All meals were in bed as my energy was so poor, I could barely brush my teeth. I keep reminding myself of the progress that I've made since July of '07 when starting MP! This week I've had some fair herxing and a couple of very nauseous days that got me pretty good and I'm still unable to work but the progress I'm making is incredibly visible. As I mentioned my energy with my first flare ('91), it took me close to 6 years to start regaining my energy. (No dx; no meds;use of supplements only). Now, after being on MP six months--- This New Years eve, I picked a few things up from the grocery story, made a cheese ball and vegetable dish to take to our friends for dinner, put away Christmas gifts, spent dinner at our friends, rode around looking at Christmas lights and came home after 11 p.m. Oh yes, I was beyond tired that night and do not choose to spend every day this way but I was capable. As compared to eight months ago when I was barely able, as I said, to even brush my teeth! Now, I see this as progress...undeniable, incredible progress...and began my New Year with so much hope for a healthy future! Last year at this time, even as positive of a human being that I am, I was sure there was no rebound in sight this time! I was recently at a funeral of a friend and our priest talked about "Surprises"...in life, we have good surprises and bad surprises...our friend had passed suddenly with a heart attack at 56 and was buried on Christmas Eve...a bad surprise for his wife who found him...as I sat listening to the sermon I noticed a comparison with chronic illness recovery, like we all are going through... ...Some days we have good surprises that we associate with healing and making progress... and on other days we have the bad surprises which show themselves as herx, pain and doubt...yet even those "bad surprises"...are bringing us closer to wellness...I wish for all of you more and more "good surprises" in 2008! BE WELL! Hugs! Deb Last edited on Wed Jan 2nd, 2008 14:02 by Deb Grabetz |
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Deb Grabetz Member in Phase 3
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Hello to All It has been about six weeks since my last update and I'm happy to report that things are improving weekly. My most notable progress since the beginning of the year is continued energy improvement. There was a time within the last 14 months that I was questioning whether I would be one of these people who were doomed to be confined to a bed for their remaining years. I could not see past this point and now understand how people do remain bedridden for years, without proper treatment, such as we have all found! In my earlier reporting I had noted that during my first flare in 1990, I had lost 75% of the vision in my left eye. Through the years, not being dx'd yet with Sarc, there was always this fear that I would have the same "something" attack my right eye and become legally blind. My right eye has been working hard over the last 18 years to compensate for this blindness. It is incredible to update today that my sight is returning in this eye! I would gauge this at about 50% improvement and look forward to complete recovery! My opthamologist all along has been doing visual field testing to watch this and it was suggested this was a pit in my optic nerve, which by the way I was told would never reverse itself! I have been keeping an eye (no pun intended) on my sight since starting MP as I was convinced now that this was a Sarc lesion, missed all along. Ahh, now I understand why I am always thinking OUTSIDE THE BOX  when it comes to what IS possible with healing on the MP and what is IMPOSSIBLE with standard, accepted treatments offered to the general public. Within the next couple of weeks I will be moving into Phase II-- Another graduation! My life as I knew it is starting to return, slowly, slowly after almost 8 months on MP--but steady now and I am so very grateful to the MP Staff! I expect that it will be even better than I could have hoped for! My first flare cleared itself after seven very long years and left me in remission but struggling with many symptoms...Thank you from my heart for giving me another chance at life! A healthy life... Last edited on Tue Feb 19th, 2008 20:05 by Deb Grabetz |
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rhanks1 Member 
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Hi Deb, You wrote me a nice note about a month ago, thank you for that. I wrote you a long, probably boring account of my illness, which seems remarkedly similar to yours. Some how I erased it right before I SENT it. I was so discouraged, and tired, I figured I would do it another day. Well I am not going to go through the whole litany again, suffice it to say, our histories are extremely similar, which is what prompts me to write you. Unlike you, I do not have a definitive diagnosis for my illness. I truly think it is sarcoidosis, but the doctor I was seeing would not even consider it, because I am white. Weird huh? Long story short, I am mad at him, and trying to find a new doctor. One thing I noticed in an October post of yours you mentioned you might get lymph drainage from your abdomen, or chest because of swelling. Did you do that? I too am extremely swollen, head to toe and my lungs are congested, tight, heavy, hell I just breathe.My feet are also an issue, because it limits what shoes i can wear, and the abdomen swelling is just sort of embarrasing. It looks like you haven't been on the protocol much longer than me, but I am back to 25mg of minocline with no ramp up in sight. I am not jelous, just want to know what you have been doing. Any suggestions, that you have will be so appreciated. I can be compulsive when I am committed to something. Getting healthy is my new compulsion. I will do anything and everything it takes. Thanks again for your sweet note, you are the only person that has contacted me and offered me encouragement. It really meant so much to me. Rebecca (replies to Rebecca in phase 1) |
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Deb Grabetz Member in Phase 3
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Hello Rebecca, Thank you for the extremely kind note. My doc did suggest the lymph drain for the abdominal swelling, which by the way came on after only half an hour or less on my feet and was intense and miserable. I would not recommend though as it seemed to put more strain on my already strained body. I had unbearable IP after the drain and would not do again. I do find much relief and improvement with my energy from the cranial sacral treatment and do highly recommend this in correlation with MP. Or even LIGHT massage as both help move the fluids through the body. Fluid build up is certainly of discomfort and also seems to make me very irritable. It is similar to "that time of the month" X 10!! I sent you a long note via email also...Again Rebecca, thank you for the very kind note and any time that I may be of help, please do not hesitate to drop me a note...As our friend Fred from West Virginia reminds us..."We are all in this together". Take care...Deb |
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Deb Grabetz Member in Phase 3
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Very excited to update that I've begun Phase II! I have now been on the MP since beginning weaning steroids (April '07) Beginning Phase I (July '07). So after eight months I've reached Phase II! Which makes me so very thankful for quite a few things, one that I didn't wait any longer than the month I took reading everything I could on the Marshall Protocol. I am so very grateful that I took that very tough step to committing to this treatment as my health has seen so many improvements already in eight months. I just happened to think last night about the pain that I would get in the back left side of my head. I realized that I've not had that sensation in many, many weeks. This happened often when I was flying and also I would wake up with this pain. As if I had a pulled muscle and my head felt sore and tender. I've had three of four sarc lesions on my legs clear completely up with the last lesion, which was by far the largest-- I would compare to the size of a boil, now almost flat. Within the last couple weeks my stamina has improved when standing. I have in past months been unable to stand for more than 45 minutes and now am on my feet for well over a couple hours before tiring. Many previous symptoms have become much more bearable over the last month or two. Even having some days of relief with my ongoing heel/ankle pain. One area that I have also seen a big improvement with is with my diaphragm. Any type of activity that put a strain on my lungs, my diaphragm would tighten right up as if a charley horse had set in. This was very miserable and would feel almost as if I had the wind knocked out of me and forced me to sit and regain my strength. Yesterday was able to go to the theatre with friends and enjoy tickets that had been given to me for my 50th birthday, the month I became so ill. (These had expired but fortunately found a kind rep at the theatre who was willing to extend these tickets based on my health.) This was the first time I had "dressed up" for an outing in 16 months! We had dinner after and returned home sometime around 8:00. It felt completely wonderful to experience the real world again. Slept well and today only suffering from some mild back pain. I am so very grateful to the MP staff for their continued support...and shudder to think what things would be like for me today without MP! Bee well...Deb Last edited on Sun Mar 9th, 2008 18:55 by Deb Grabetz |
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AK Teri Member in Phase 3
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Deb, I totally agree with your mention of cranial sacral therapy in the Feb 27th post. I see a physical therapist that has this added specality training and cannot say enough about it. With my rheumatoid arthrits she is often able to dissipate a lot of tension and tender points. If it wasn't for her hard work last year, I feel strongly I would have had a shoulder freeze up. The bottom line is my pain is definitely more managable if she works on me regularly. It is great to read your positive progress! Teri |
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Deb Grabetz Member in Phase 3
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Hi Teri, Yes, I hope others will give the cranial work a try it is certainly encouraging stuff as I journey through MP. I have found others from Sarc support sites also find some relief from the cranial work! Currently at fourth week in Phase II-Level 1; going to Cycle 3 soon. Major adjustments coming into Phase II. Spent 10 out of 20 days of my first two cycles in Phase II in and out of bed. Have tried adjusting a few meds and finding myself at a much more comfortable level at this point, in fact much better than I have been in months!!! In fact I have ventured out more this week than I have since starting MP almost a year ago and doing well. Very well going out. Much less light sensitivity over the last couple of months. I was able to comfortably ditch my indoor 10% NoIR's and trade for 40% indoor NoIR's. I continue to use 2% NoIRs for outdoor use as they are the most comfortable feeling. Our bodies do seem to automatically identify the light sensitivity; there seems to be no rule of thumb for me on this. I just adjust my NoIR's in response to my body responses. A few times while on the computer I have switched back to 10% for a comfort level.Also, have longer periods of standing without the weakness, back pain, and general malaise that I have been reporting in my posts over the last year...Back pain is now occasional, rather than every single day. Experiencing a little neck pain that has been gone for quite some time (only since beginning MP) but not surprised. I believe I have been heavily laden with neurosarc for a very long time and my neck has been a very big part of this picture. My intense back pain herx that surfaced once starting MP solidified, what I had long thought, spinal involvement for many years. Continue to have very strong heel pain which is strongest when waking and standing or after sitting for long periods. I believe this is connected to an old injury to my ankle which never seemed to bother me until I started Prednisone when first diagnosed Feb. 2007. Resting as needed, does now re-energize me unlike when I first flared 17 months ago. Resting back then was just a necessity for survival!! I'm happy to say that after all these months I finally feel much more in control of my herx than ever. This was not an easy point for me to get to as I'm sure others have experienced, it was a constant battle adapting to the ups and downs of every med change/increase. I've learned not to expect what worked last week to work this week, or even in a 24 hour period. I've also learned to read as many posts as I can of other members-- at the same levels that I am-- including those of current members and previously ill members-- to see if any correlation to my herx. Moving steadily forward.... Wishing everyone well.... Deb |
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Deb Grabetz Member in Phase 3
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Hello all... Updating progress with Phase II. Within the last week I have had to adjust meds in order to get my IP back to tolerable. My IP had become intolerable to the point that I knew in order to progress with a positive attitude I would need to make some meds adjustments. My fatigue and weakness had progressed over the last month and had become the main IP I was experiencing and had me bedridden again . Now, I'm back to working on all areas of healing as my IP in other areas has resumed and I'm much less fatigued. Still resting, just not at an intolerable level.  There has been such huge improvement with my lungs. Although, still experiencing burning in my chest/rib areas from my response to the protocol. It seems from what I'm sensing that my lungs are "bigger or fuller" than I can remember in years. Although my breathing tests have always come back in a "normal range" and the docs thought all these years I had asthma, I have never had normal lung response. I fatigued easily with activity (before and after weight gain), always had extreme sensitivities to inhaled chemicals, dust etc. and so always chalked it up to allergies. Until I was dx'd with Sarc 18 months ago. Now I realize it has been the Sarc causing my difficulties. It is wonderful to feel my lungs feeling so open and I'm sure this will only get better as I continue with the MP treatment. In past weeks I have been doing a lot of clearing out in my chest as I cough! Good stuff! My ability to stand at the present seems to be improving. I've been able to do a few more tasks while on my feet as compared to a couple of months ago. My chest continues to tighten up if on my feet for extended periods of time so I try to adjust my tasks to what my body is telling me. Pushing being on my feet too long, ends up with my rib cage feeling like I'm being squeezed by King Kong! All in all progressing nicely. I have continued to be quite consistent with my avoidance of sun. As I'm still unable to work it is fairly easy to adapt to this lifestyle. Indoor while watching TV/computer I'm comfortable with 40% NoIRs yet continue my 2% ALWAYS when I do venture outdoors. Uncomfortable with any higher transmission. Bee well....Deb P.S. I DO WISH TO ADD A VERY IMPORTANT NOTE: There are various sites devoted to Sarc and chronic illness. I've often read and also been told by docs that this disease will go into remission on its own. It is apparent from the progress I have seen since starting MP as compared to my previous ill state, that my progress has absolutely nothing to do with "Sarc going into remission on its own" but in fact my own body response to this protocol. It has now been 10 months since I started MP. My first flare occurred in 1990 and took me seven long years to "settle" without any treatment and also left me with various symptoms, including a highly allergic state. Even in this short 10 months, my so called allergies, which I believe to be a symptom of having Th1, have settled considerably along with MCS. I have noticed that when exposed to chemicals I still have a brief reaction but it is brief...as compared to dizziness and fatigue that used to stretch out through the day after exposure! Great stuff if you ask me! Last edited on Mon Apr 7th, 2008 23:05 by Deb Grabetz |
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Deb Grabetz Member in Phase 3
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 Going on over three weeks now since making an adjustment with my meds which has helped me so much by way of energy and milder IP. Happy to say that I'm pleased with my decision and feel ramping will present better outcome on my adjusted med. A lot of activity in my back (spine), parathesia type response, having some trouble standing again for long periods as this relates to my spine. Mood very tolerable. Finding some consistency to how I respond vs what days I am taking my meds. Something completely fascinating to me is my hair!!! My hair has never been overly thick but years before I became ill it was full and a great texture. Within the last few years I've noticed a lack of luster, thinning, limp and pretty much blamed it on my age. Not so, after almost a year on MP I'm seeing some very notable changes. Usually it would take a day of accumulating hair spray and other hair products to get any fullness into it...but after washing I am able to see such a difference! Very ! My hair feels full of body when I run my fingers through it, such improvement with texture that it would be hard to dismiss....I'm probably going to lose some just from playing with it all the time It's really an interesting and much welcome find in my MP treasure chest!Last edited on Wed Apr 23rd, 2008 23:14 by Deb Grabetz |
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kelly well Health Professional 
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Deb, Thank you for posting. What an encouragement to read your story. I too have a swollen abd. ( I recently had an internist tell me my abd. looked like I had had 6 children especially since I've never had one!) I do think my facial edema is resolving. I'm only 2 months on the MP. It has been hard but after a trip to Mayo's 2003. and swollen lymph nodes where they thought I had leukemia when I was 4 years old ...I have just now in Feb have a sarc DX. It's wild to look back and see years ago swollen lymph nodes on CT scan , insomnia ,etc, bronchiectisis, Chf, and aterial fib, but no sarc DX. I thank God for MP and those who help me on it. I'm homebound , but have hope. Your story and especially the abdominal swelling I could relate to well. Sincerely grateful, kelly well PS I also could relate to your having a good man as a hubby, Mine has been through hell and back more than a few times with me. He met with my MP doc yesterday for 1.5 hours and that helped him understand so much. He is very pro MP now even though he won't go on the site (yet) . Glad you have family support too. although I feel I've gained another (MP)family in this journey to health. Last edited on Thu May 8th, 2008 02:51 by kelly well |
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Deb Grabetz Member in Phase 3
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Meg put out a very interesting link which is full of great information, that I've pasted at the end of my posting for all to read! PLEASE TAKE THE TIME TO READ MEG'S LINK--IT IS EXTREMELY INTERESTING AT IT APPLIES TO OUR ILLNESSES! After reading through this link, I found more and more of a connection to what had probably brought me to this place of illness that I reached. I started thinking about the injuries, surgeries, exposure to inhalants etc that were just a part of my life, never making the connection that I had been susceptible to bacterial invasions of all kinds! *Vaccinations *Measles; chickenpox at a young age *Tonsillectomy; age 4 (gas) *Fingernail biter all of childhood (think about the bacteria! I saw on tv news recently that staph is common on fingernails) *Bike accident early age- 6 inch wound across my knee *Cut foot requiring stiches age 11 in the Ohio River (ugh! If anyone familiar with the Ohio River, you know what the ugh is for! We spent every summer boating on the River). (Local anesthetic) *Exposed to renovations from early age through adulthood; lots of dust and chemicals. Gutted an 80 year old farmhouse at age 19 with no respirator. **Avid sunbather from age 14 through adulthood (age 27maybe). Luckily have not done tanning beds. Used no lotions with sunblock; always baby oil. Dark skinned did not feel necessary, surprise! *Birth control pills for four years *Wisdom teeth extracted age 21 (Local anesthetic) *Strep throat two or three times (Antibiotic courses) *Exposed to farm chemicals. Allergies flared after move to country. *Cesearean section age 20 (Epidural) *Bad bouts of bronchitis started around age 21; took many antibiotics over next few years. Seemed to clear once we moved and avoided wood stove. *Cesearean section age 23 (Epidural) *Minor car collision; neck injury. *Fell from second story stairs and injured tendons in ankle;on crutches 6 weeks. *Tooth extraction age 25 (Twilight anesthetic) *Stitches in finger age 25 (Local) *Cesearean section age 26 (Epidural) *Tubal ligation *Bad iron burn; steamed my leg accidentally. Had 8" radius blister on thigh. Topical prescription ointment. *Hernia repair age 34 (Anesthetic) *Allergy testing. Injected with normal regimine of substances to invoke reaction approx 40 different injections. Took allergy shots for two years *Acrylic nails *Moved to 100 year old home;again gutted no respirators; exposed to severe form of mold **Flared at this point, age 35 with neurological Sarc; undiagnosed. *Tooth extraction age 36 (Local anesthetic) *Deviated septum surgery; nasal surgery age 37 (Anesthetic) *Acrylic nails wore for over 5 years (removed when became ill second time) *Laparsocopy age 48 (Twilight) *Partial hysterectomy age 48 along with bladder repair (Anesthetic) Due to c-sections had to do bikini cut-- Had complication with bladder; Bladder had moved into my bellybutton area from adhesions from my c-sections. Had to call in bladder specialist; so was opened up for period of time before could perform hysterectomy while waiting for bladder specialist to arrive. (45 mins?) *Returned again for allergy testing. Another round of 40+injections. Took allergy shots for short time. Approximately 6 months before second flare. **Flared second time age 50 Diagnosed with Sarc What I find interesting is that during the last few years since first flare finally went into remission, approx at age 42, I stayed quite well. (Less invasive procedures also during this time!) Went for monthly massage and rarely was sick. No colds, flu. Rarely took medication. Rarely even took Tylenol as never had headaches. As I review all the opportunities that I had to bacterial exposures, makes a lot of sense! Here is the link: How does Th1 inflammation develop? What is successive infection? Happy to report that I'm able to do a little more each day! Planted my eight window boxes with flowers last week! Amazing! Something that last year I did not even want a friend to do, as I didn't have the energy to either enjoy or water! It felt miraculous in just a short year....to be able to feel good enough to not only manage to go to the greenhouse (completely protected) but to also have the desire to plant and nurture them! This is such remarkable progress as compared to the first time I flared in 1990. ...I managed to work full time through my first flare with much determination and help from my family. It took a full seven years to go into remission...this time around since being on MP for *11 months*--I have been able to go from being bedridden for four months to where I am today, having a few normal days each month. My future without MP would have been a very bleak one, of this I am now sure! Take care all..DebLast edited on Mon May 19th, 2008 23:06 by Deb Grabetz |
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Deb Grabetz Member in Phase 3
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p.s. With my last post I also omitted what I feel is a big attribute to my illness and response system. Two years prior to becoming so ill (1990), I worked in an office. This office was exposed to afternoon sun five days a week. It is the type of building that was constructed with an all glass curtainwall so there was no shade other than if we would close the blinds. My desk was seated right in front of one of these huge glass panels. Prior to that I had worked in an enclosed office area where there was no daylight at the same company. I soon moved to another building and worked again for 15 years in the same type of environment, all glass curtainwall yet on a larger scale. My desk set more to the interior of this office-- still exposed to sun. For all of this time I dealt with the irritation of fluorescent lighting. It was quite obvious that it would give me many neuro problems, so I finally had the light bulbs over my desk pulled out. It was much more calming, yet still had to deal with the remaining fluor in this wide open area--my guess would be 30 overhead lighting components with 3 fluorescents each, so approx 90 fluorescent tubes. Fluorescent lights to me are as annoying as someone scratching on aluminum foil with a knife! After I found MP and spent much time reading on how bright lights and sunlight affect us, all my questions were finally answered! I think all of this ADD and ADHD stuff is a bunch of mularkey. These kids are probably having neuro responses due to underlying Th1 illness, to these annoying fluorescent bulbs that were meant to save costs in our schools! Wouldn't surprise me one bit! I rarely take my NoIR's off while in a lit store yet have experimented. Since being on MP for almost a year now, I do have less trouble with lights than I used to, as it was always constant. I suppose many have experienced the exhausting fatigue that comes after going to the grocery store or to a shopping mall! Take care! Deb |
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Deb Grabetz Member in Phase 3
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p.s. With my last post I also omitted what I feel is a big attribute to my illness and response system. Two years prior to becoming so ill (1990), I worked in an office. This office was exposed to afternoon sun five days a week. It is the type of building that was constructed with an all glass curtainwall so there was no shade other than if we would close the blinds. My desk was seated right in front of one of these huge glass panels. Prior to that I had worked in an enclosed office area where there was no daylight at the same company. I soon moved to another building and worked again for 15 years in the same type of environment, all glass curtainwall yet on a larger scale. My desk set more to the interior of this office-- still exposed to sun. For all of this time I dealt with the irritation of fluorescent lighting. It was quite obvious that it would give me many neuro problems, so I finally had the light bulbs over my desk pulled out. It was much more calming, yet still had to deal with the remaining fluor in this wide open area--my guess would be 30 overhead lighting components with 3 fluorescents each, so approx 90 fluorescent tubes. Fluorescent lights to me are as annoying as someone scratching on aluminum foil with a knife! After I found MP and spent much time reading on how bright lights and sunlight affect us, all my questions were finally answered! I think all of this ADD and ADHD stuff is a bunch of mularkey. These kids are probably having neuro responses due to underlying Th1 illness, to these annoying fluorescent bulbs that were meant to save costs in our schools! Wouldn't surprise me one bit! I rarely take my NoIR's off while in a lit store yet have experimented. Since being on MP for almost a year now, I do have less trouble with lights than I used to, as it was always constant. I suppose many have experienced the exhausting fatigue that comes after going to the grocery store or to a shopping mall! Take care! Deb |
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Deb Grabetz Member in Phase 3
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I hope for all of you who are just starting MP you will find it encouraging to know that there is hope when we feel the most helpless...and wellness with MP is completely possible-- with much diligence and adhering to the protocols strict, yet necessary guidelines.... In March of 2007 my journey with MP began, weaning from Prednisone...this was after three months of despair on Prednisone... Day 3- Some symptoms beginning to surface; all tolerable with Benicar. Stomach bloating X X
Upset stomach episodes/diarrhea (Went from constipation to diarrhea) Think cheese cheating may have caused my upset stomach. X
(Sept '07) Six months on MP... Well my day yesterday changed drastically...going from rough to rougher...I did not get out of bed as of this morning basically for two days...so decided I had better quit trying to let my herxing get so out of control and took my Mino this morning, rather than holding out for the 48H dosing. My pain was very manageable as I was on 4H Beni-- but my body physical/mental was non-functioning-- *Very heavy, consistent coughing yesterday and productive, which seems to continue to clear my chest. *Neck lymph swelled *Mild ear itching (internal) *Leg, heel pain; some restless leg *Mid back pain; flank pain *Exhaustion quite heavy and debilitating; lacking ambition and my usual zest for life... Emotionally, yesterday I went through this, "can't take one more day of this being ill" so I know I let my IP get past me. Not feeling so sorry for myself this morning! Which I don't usually do...but sure was having a pity party yesterday...for myself and by myself! Please note: I can only assume this was from the increase in Mino to 50M48H but also was out the day before for my anniversary (31yrs ) for lunch. Restaurant was dimly lit and not out in sun unprotected for any length of time. Of course, I find that any activity where I'm walking or on my feet has a big effect on my overall health right now. Maybe a combination...I feel a bit of energy seeping back into my body since taking 50mg of Mino this morning.Have a good day....Deb 15 months into MP.... Reporting June 1, 2008 Mild stiffness in feet and hips- 3-4. Carpel tunnel like response in hands 3-4 Ringing in ears 3-4 At times 5-6 Itching inside ear canal 4-5 Mild chest burning 3-4 Mild back pain, burning (spinal) 3-4 Aching pain in calves 5-6 Heel pain 3-4 Abdominal swelling mild 3-4. Mild tightness in ribs coms and goes 2-3 Flank pain left side this morning--have not had for a few weeks 3-4 Fatigue after eating almost immediate; smaller meals do not seem to make a difference;sometimes have to sleep. Seems improved this week after increase. From 9-10 to 4-5 Fatigue and weakness improved after med increase. Depression/Anxiety also improved after med increase. Mild at 3-4 Not as zippy as usual though, certainly getting some neuro affects! Question: None Comments: Just humming along nicely! 15 Months on MP-- Did I ever think I would see the day that I was truly feeling better? Honestly, no! I have had great faith in the MP from the beginning but was too sick to see the possibility of actual wellness...and here I am reporting such improvements! Seeing my life returning.. |
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Joyful Board Staff
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Deb, your progress is so encouraging! You have come such a long way and your renewed hope has got to be good for your health! Thank you so much for sharing! |
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Deb Grabetz Member in Phase 3
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Just a quick encouraging post today! This weekend I realized how far I have come since a year ago... We attended a wedding and not only was I able to attend the wedding (at 1:00p.m.) and reception but did not get home until 12:30a.m. During the reception I was able to socialize and slow dance...(yes, I've not yet reached that stage of expending energy on fast dancing! The hustle was very tempting but I know better!) Last year at this very same time, I attended the wedding of a very good friends daughter and was wiped out after the ceremony. To the point I tried to come home and rest, so I could try for the reception but was unable to pull it off! Showering and dressing had me pretty wiped out before I even got to the church and the ceremony was all I could manage! There is no better way of confirming progress...than to look back at earlier shortcomings! Finding the MP for me has been an incredible gift. 18 months ago I was bedridden with fatigue and weakness for almost four months-- so now, the days that I spend in the house with energy and able to clean closets or do light housework are precious to me! July 6th: One nice change I have noticed is that I have been able to stay up later at night since increasing the abx, get a good nights sleep and wake up refreshed. For many years I have fallen asleep earlier than I was accustomed to. This was a nice change and seems like very positive progress in terms of energy extension. |
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Deb Grabetz Member in Phase 3
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It has been 13 months since I started MP. Below in blue is IP that I reported in Phase I-- I've noted in black current status! Wow, was it ever fun to compare my progress and how I have also forgotten how horribly crummy I was feeling back then! This has encouraged me, especially when I'm fighting with fatigue this week! *Rib cage pain and tenderness *Now very mild. *MCS to anything sprayed; smells; etc triggers head to swim and almost immediate fatigue kicks in along with extreme and I mean extreme irritability!. *This was always such a strange symptom that I didn't recognize as MCS but I sure had it big time! I'm now still sensitive to too much exposure but don't go haywire with a squirt of Windex! I've seen about 75% improvement from my MCS symtoms. Nice! *Tightness in chest; bronchial area *Now broncial tightness completely gone, talking completely clear. Was very "hoarse" during this time. Able to sing clearly. Tightness in chest is very occasional. *Mid back pain *Comes and goes but in a milder form that Phase I. *Wooziness; like my head was mildly swimming...with prominent ringing in ears. Feel a bit like a bobble head, if that's a good description of this...or like I'm swaying on a boat... *Completely gone. *Face feels a little clammy...but all bearable. *Once in awhile with abx increase but rare. *Night sweats *Completely gone. *Internal body shudders;tremors *Resolved in Phase I. Complete internal calmness. Always felt like my insides were shuddering; tremors resolved. *Fatigue kicked in a bit heavier the first hour after taking. *Fatigue continues to be a problem but also have had neuro issues for 20+years, no big surprise! *Coughing most of the day (haven't coughed in a couple of months);productive. *Rarely cough. Also have noticed a big change with exertion or laughing, as these two things used to put me into coughing fits. I feel such clearness in my lungs that I did not even know possible. I was used to having that "full" feeling in my lungs and really did not know a difference until my lungs started opening up. This seems to have improved once in Phase II. ...then later woke up about midnight (I looked at the  to check the time)... whew some other stuff really kicked in...*Pressure in my waist area which I'm guessing was increased flank pain *Gone *Restless legs *Occasional but not bothersome *Sinus drainage *Gone. My sinuses seemed to run 24/7 before MP. What a pleasant surprise to find that this was not a normal physical symptom that had to be endured for the rest of my life. I rarely have any drainage, even with the seasonal changes that I used to endure. I barely noticed spring this year. In previous years I would be popping Allegra trying to survive our Michigan change of seasons. Wow, what relief! A dry nose and throat! *Left ear itching *Still have ear canal itching! Ick, bugs in my ears! *Activity in my right ear *My right ear has been a big problem for years and years. In 1990, with neuro flare, this ear was literally plugged for close to 3 years and no doctor could tell me why (undx'd). I can't put into words how miserable this was. Often wished I could have taken an ice pick and crammed into my ear for relief...I would used heat packs and massage and anything to give me a few minutes of relief. I now realize that it was the Sarc affecting these nerves. Since MP my ear is 100% back to normal. No fullness, no pain, no internal pressure, it is like the ear I was born with! This is also the same side of my jaw that was always "swelled" feeling and could not close my jaw comfortably. All resolved, along with gum tissue swelling resolved. This is one of the first big things that improved for me after Phase I. *Tummy "activity" *Don't even remember what this is so it must be resolved! *Leg pain *Still have leg pain. Feels like muscle tightness with achiness and usually flares up with abx increase. *Neck pain *Neck pain was at about the same level as my ear trouble for the last 20 years. I rarely now experience neck pain. In years past I used heat packs and again massage to try to get some relief. My relief came from the MP!!! *Shoulder pain *Gone *Sore throat *Gone *Left heel pain *Still fighting but in milder form. *Increased heart beat *Very rare but do experience some irregular heartbeats. I used to notice this much more often before my flare and especially with activity. I would say 90% improved. *Exhaustion- Fatigue- Flu-like /Intolerable at this point with Mino dosing *My fatigue was normally at a 10 every day for a good year. I have now reached a point where some days I do not experience any fatigue and other days just need to take it a little easy. I try to remind myself how different my level of fatigue today is, even if I'm not feeling the best, somewhere at it's worst a 6-7. In the beginning, before MP and then into MP, I would sleep 4-5 hours after any small outing. Today I am able to go most days without a nap. It is rare I nap anymore. The first few days after taking my once every ten day med, I usually feel pooped but then have many what I would consider normal days. I no longer have the flu-like feeling that I experienced for most of my first year, ugh! Still not working as my energy does not allow but feel like it is closer on the horizon. *IBS *Improved roughly 50%. *Bloating *Occasional *Mild wooziness at times; Seem similar to Neuro I had in '91 *Gone *Mild irritability *Irritability has much improved. Wow, I never saw my moodiness as anything to do with my health until MP. My thought processes have seemed to change. Although I am a pleasant and an easy going person, I would have irritable moments that now do not seem to experience as often! *Mental confusion/fog/lacking ambition/cannot cope *Coping skills have returned. Mild mental confusion/fog continue but also neuro for many years and have seen many improvements. Ambition definitely improved. *Low back and Flank pain on left side has increased/Kidney on left side seems to be acting up. *Much improved and only occasional with flank. *Heavy chest/burning chest/some intermittent heartburn *Heartburn is gone. Burning in chest is also gone. My chest pressure was quite extreme;felt like I was having a heart attack on most days. Now gone, maybe occasional pressure but not enough to measure. *Deep sleep with very intense dreams/all pleasant though! (Yesterday it was my wedding day..with a few of my original bridesmaids!) LOL! Surely tied in with just celebrating my anniversary  *Dreaming continues, always pleasant!*Ankles swelling intermittent *Have some swelling with my left foot and also some swelling in lymph on sides of both ankles. *Swollen neck glands *Occasional but not as prominet. Have had swollen neck lymph for many years. Always felt some connection to how crummy I felt! *Ringing in ears is constant *Comes and goes;barely noticeable. *Heel pain/though sometimes seems to improve *Still dealing with heel pain in left foot. This has much improved as at times I was on crutches just to get around I was in so much pain. Would usually take about 10 minutes to loosen up in the morning, so now very tolerable, although still existent. *Pressure low belly *Gone. *Hollow sound in head/Have this off and on *This was not a painful symptom by any means but a rather frightening one. After taking Pred this symptom began. To try to explain, when I tapped on my head it sounded similar to what tapping on a balloon full of air sounds like; it was very scary for me. Have not had this for a couple of months now. In my first flare always had the sensation that my head was swollen but of course the docs looked at me like I was a  and also a little  when I would tell them about this. *Swollen lips/Dry lips/Dry eyes are back *Gone. Dry eyes occasionally if I take my NoIR's off for too long. *Pain in right groin (lymph) which seemed to have corrected itself (have had for very long time) returned rather strong yesterday. *Much improved;rarely shows itself. Gum tissue swelling and tenderness resolved itself latter part of Phase I. I dealt with this, seriously for almost 20 years! Dentist always told me everything looked normal yet it wasn't. Tissue is completely normal, jaw swelling is completely gone. Teeth close nicely! Three leg sarc lesions are healing. Two completely healed with the largest now close to being gone. Wishing all a healthy MP recovery!  Go for the gold! Never give up!July 08: I was pleasantly surprised by not only my sinuses improving 99.9% on most days with a rare and occasional herx...but also the disappearance of swelling in my jaw tissue, muscle area along the jaw, mastoid (behind the ear), ears, gums and throat. I have now come to realize that I had inflammation in all of these areas, which included trouble with the connecting tissue to my ears. This 18 year problem has now settled to the point that I have to remind myself how miserable I had always felt in previous years with all of this undx'd inflammation! Oh yes...Makes me very |
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Deb Grabetz Member in Phase 3
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Hi ...and a quick update! I'm finding now after a year on MP, such noticeable improvements with not only my energy but also with light sensitivity. Over the last couple of months, there seem to be "many good days" as compared to a year to year and a half ago-- with "not one good day". The pendulum has now flipped to the other side! I truly did not feel I would be well again and I am an optimist, if that helps explain how sick I knew I was! My treatment is at a point where I see improvements month to month. It surprises me how these changes are ever so subtle... they take TIME. Yet, the healing is so visible! Over the years, having dealt with so many symptoms, I did not understand "normal". I'm beginning to relate to other posts I've read from members who have said, "they never knew what it was like to really feel well until they had progressed on this protocol." It was a very tough first six months-- at times I thought I could not take one more day of pushing through the herx-- and yet I knew that I had no other options if I truly wanted to get well...Thank god, thank the moderators, who never give up on us... I am being honest, without the help of these moderators I know I would not be where I am today...I reached that "breaking point" a few times...and each time they threw me a lifeline to hold on to! Thank YOU! xo Deb "At times our own light goes out and is rekindled by a spark from another person. |
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Deb Grabetz Member in Phase 3
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This month I have my eye appointment for my visual field testing! It is exciting to see what my results will be compared to the visual field I had done years before, since I've seen improvement with the blindness in my left eye, since treatment with MP. I realized that there has been an improvement with my neck. My neck has hurt for too many years to mention, but also when I ran my fingers from the base of my neck (where it meets the shoulders) up to the base of the skull to get relief from the pain I would always hear this *crackling* noise. Like cartilage crackling. This crackling noise has been gone now for few months and oddly enough I rarely have neck pain anymore. I believe when I do it is some sort of IP--but my neck pain was constant since delivering my daughter by C-section in '84 (epidural). Along with our beautiful baby daughter, I brought home a bundle of neck pain!!!!Last edited on Sun Aug 3rd, 2008 21:27 by Deb Grabetz |
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Dr Trevor Marshall Research Team 
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There are lots of lymph nodes in that area, Deb. They are probably not swollen any more. You should be able to turn your head more when driving - not as much as an owl though - don't try that... |
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Deb Grabetz Member in Phase 3
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Trevor, Yes, you are right! I have not had good range of motion in my neck--so I read your post and sure enough I am able to turn comfortably from side to side . At your advice, will not attempt the *owl move*! DebLast edited on Mon Aug 4th, 2008 05:09 by Deb Grabetz |
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Deb Grabetz Member in Phase 3
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This time around, I'd like to post, how I realized after 20 some years of illness that I had found my answer with the MP research! Yes a lightbulb truly went on for me! People do one of two things when ill, they either choose to "give up" or they never give up looking for a cure. For me, the MP answered many questions that I'd struggled with for over 20 years. I wasn't willing to just take what a doc told me as gospel, just because he was a doctor. WE know how we feel, it is that simple! When I had a well known internist tell me after looking over my long list of neuro symptoms, that I needed a psychiatrist, my husband and I, walked out of his office knowing that he might be the one that needed a psychiatrist to help him practice better! This was before my sarc dx. After 18 years I finally had a dx of sarcoidois and the only thing offered to me was Prednisone. When it was making me deathly ill, I knew that wasn't an option! We can learn a lot from listening to our bodies! Here are some points that the MP answered when I started researching it in 2006, many of these questions went back to the late 1980's for me: Why is the lymph in my neck, groin and chest area always so swollen, with other lymph areas very tender to touch. Knotty tender areas throughout my body? Once diagnosed with sarc it was very evident why. I had wondered for years if I wasn't dying with a slow growing leukemia. After reading through the lymph connection with Th1 disease and how the MP would help...  (A lightbulb came on!) Why does a cold always goes into my chest, turn into bronchitis and require antibiotics to clear up, when other peoples colds just go away? This was common. I dreaded getting a cold as I would always end up on an antibiotic, something did not seem right. Coughing my insides out until the antibiotic took over, After reading the MP.... With my 1990 neuro flare, I became highly light sensitive. After seven years of neuro, things settled but not the light sensitivity. No doctor could explain it, especially the oh so aggravating fluorescent lights and the fatigue and dizziness that came with this, ugh...In 2006 as I researched MP, well, we all know what I found about the direct connection to amalgda, bright lights and sunlight...what a novel Neuro symptoms were endless, fatigue that was not resolved with rest, loss of balance, loss of spacial grounding, sensation of plugged ears, dizziness 24/7, internal body tremors, external body tremors, feeling like the floor was moving under me, light sensitivity, sound sensitivity, stiff neck, low grade temp, loss of eyesight in one eye, lack of concentration, unable to find words, brain fog, confusion, facial edema, MCS...Neuro symptoms explained with Th1 illness, hmmmm, didn't need a psychiatrist after all... Exercise intolerance, becoming fatigued, chest pressure and coughing. My energy level seemed low, so anything I did and it was a lot, came from physically having to push myself all the time. For many years this would also bring on chest infections after I had over exerted myself. A walking regime and ending up with what I thought was a chest cold...What could be more classic sarc, explained by the MP.... Responding to short courses of antibiotics always gave me this burst of wellness, I knew there was something bacterial going on. Sinus infections were endless, to the point I was taking steroid shots in my nose. Ear problems, eye problems, bladder infections, IBS, a jaw that had been swollen for almost 20 years with no relief... A needle in a haystack, or so I thought....Until I researched the MP, to find their research in the use of low pulsed doses of abx and Benicar ... Reacting to milk, dairy, eggs and fish was always very obvious. After the neuro flare I did things like stopped drinking milk, cutting back on coffee hoping to relieve the stress on my body which I thought was allergy related. What I didn't stop was eating eggs and fish, which also made me feel unwell...Sun exposure not only brought on fatigue but irritability. Worked for years in an open all glass curtainwall office 40 hours a week, with full blown sun on me. Then I became a flight attendant...Just a little bit of UV going on there!... Vitamin D was one of the first things I picked up with the MP. A wake up call and a real smack in the face... With a second severe flare and a biopsy dx of sarc, I also found being medicated with Prednisone was making me react violently. Although it was helping calm the inflammation in my chest so that I could breath, it had opened a mad nest of hornets, in every other area of my ill body.... Reading on the MP about immunosuppresent drugs shutting down the immune system and allowing Th1 to wreak havoc with an ill host...a core of the MP... It wasn't long after finding out I had sarc and reading about the MP, that everything came together. What a joyful and yet tearful and bittersweet time this was. That with so much knowledge we have in medicine today, there wasn't an educated doctor within 300 miles, that could answer any of my questions for so many years. Yet the MP did... Not only did the MP answer my questions 18 months ago, but as I continually respond to treatment and improve, I see more and more how very ill I've been! There are surely no words that exist, to properly thank Trevor and our research team...!Last summer I was unable to walk a quarter way around the small city block we live on. I was so ill and weak it was impossible, my chest swelled and I was totally breathless and returned home in tears. Last night I walked six blocks to our downtown theater, watched my nephew in a play and walked back home. Something many take for granted.... Deb Last edited on Sun Aug 17th, 2008 00:15 by Deb Grabetz |
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Deb Grabetz Member in Phase 3
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Some exciting news came from my doc's office today with some recent bloodwork! Sed Rate (ESR)--which is a marker for inflammation has come down within a normal range for a female my age! Music to my ears!  12/06 Dx with pneumonia SED RATE -22 1/07 Dx with sarcoidosis SED RATE -48 4/07 Sed rate dropped to 38 (due to immunosuppresant Pred.)**Pred discontinued as of 7/07. 10/07 SED RATE- 38 8/08 SED RATE- 25 (12 months on MP) the range is *Less than 30* |
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Scarlett Member in Phase 3
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Deb: Congrats on the excellent news!!! We will take every morsel of healing we can get and celebrate each one. Scarlett |
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Deb Grabetz Member in Phase 3
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Hello to all, Officially I have been on the MP now for 14 months + 3 months of weaning from steroids prior to starting abx. At this time, I am exactly midpoint in Phase II-- Nearly two years ago, I was very ill and soon after, bedridden. This month I traveled to see my ailing grandmother six hours away by car and just this last weekend went with my bunco friends for a lake house getaway. I remain cautious with light exposure and foods containing vitamin D and consider this a big factor in regaining my health while on the MP. I am functioning finally at such a higher level as compared to two years ago. Things such as able to do housework, laundry, stairs unlimited, taking walks, light exercise, talking on the phone for lengthy periods, watching tv again, reading again, grocery shopping, social outings, etc. all with minimal fatigue. I love the spunkiness that I see returning--I lost all of this when I became ill. It was not that long ago that I felt my future was very questionable! Because by nature, I am a very positive and up person, I tried not to let on just how bad I felt things were. There were continual days of feeling that I would be bedridden for the rest of my life, I was struggling to stay afloat and very depressed and filled with anxiety. Yet those who knew me saw how much my life had changed, so must have been aware of my struggle with all this. Those who are close to me, family and friends are starting to see the old me returning. I not only look physically well but my energy is showing itself on some days. I still have my days full of IP, yet many of those have been replaced with fairly normal days. Month to month--noticeable changes now happen for me. I'm unable to return to work yet, due to the physical demands of my job, still, have begun *thinking* about what it will be like to return to work someday; whereas in months past, I was lucky to take a shower or get dressed!! Words seem hard to find to express my gratitude to Dr. Marshall and our tireless, dedicated, staff. In all honesty, I have broken down into tears a few times, as I've accomplished something as simple as vacuuming, that I was unable to do for so many months. I owe my life and a future of healthy living to all of them and this protocol! Last edited on Tue Sep 30th, 2008 03:43 by Deb Grabetz |
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Dr Trevor Marshall Research Team
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expate Member in Phase 3 
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And as much as you feel you have received, you have given back to the rest of us. Your words of encouragement, tales of triumph, and suggestions that come whereof your experience has schooled you, are a gift to us all. What goes around comes around. Thank you, dette |
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Deb Grabetz Member in Phase 3
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Odette, Your kind words just made my day!! ...and your *signature* always makes me smile, you clever gal. Deb |
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Deb Grabetz Member in Phase 3
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With Halloween just around the corner....it brings not only an MP story to mind but a progress report! I've always loved trick-or-treaters since we moved back into town. In the country, my guests were always just a few...and always children we knew but pretended not to recognize.  Last Halloween, I was so very ill, I was unable to go to the door to greet these little and sometimes big creatures! My hubby was working afternoons and I was determined not to let Halloween get past me, so I asked my youngest daughter if she would be willing to come over and pass out goodies! (I'm not fond of the idea of leaving out the bowl of goodies--it's a little scary and impersonal for some of these little ghosts and goblins). As I lay in bed and listened to the ringing of the doorbell, the sounds of "trick-or-treat" and my daughter playfully entertaining each group that came to the door, I realized how ill I was at that time. I had alway enjoyed Halloween, making costumes for my children each year and decorating our home. So much had changed. I did not have enough energy to take an interest in anything. A year later, I am far from that gal who was in bed! It is easy to forget where we have been as we slowly regain our health, and it even surprises me that I'm now saying this after such a long battle of ill health. But the mind has a way of healing bad experiences. Just the other day as I was buying popcorn balls to pass out this year...I was reminded the state of my health just one year ago. This week I had gotten up around 5:00 (pet demands!), washed a load of clothes, put away dishes in the dishwasher, vacuumed our downstairs, dusted our hardwood floors and made the bed. I showered and got ready to spend the rest of the day with my daughter who was coming in from out of town. Heather and I had lunch, took a drive to look at a house another daughter has bought, picked up my prescription glasses at Wal-Mart, went to the craft store for a few things and went to the paint store and I picked out paint (yes, without standing for hours deciding!) for a bathroom my daughter is re-doing for me! When I returned home that night, I realized it was 6:30 and I was on the computer checking email! Now, not every day is this way and I find I get a bit overzealous and have to take a few steps back on some days.... My point is I am recovering! I hope that through all my journaling I will never take my renewed health for granted and as I continue to improve even more while on the MP, never forget where I have been. My hope is that when I am fully well and living life the way I am meant to, I will always stop and remember what it was like to have my health taken away. That I will forever be grateful for those who were unselfish--Dr. Marshall for this incredible, over the top, research----Our moderators for their constant support--Doctors who stepped outside of their box to monitor us while on the MP--and the many Friends here on the MP who encourage us each and every day not to give up-- I also hope that when I have that very ill person sitting across from me, telling me their story--that I will never forget where I've been and will offer them my time to listen and every kindness and support that has been given to me!! Last edited on Sat Oct 18th, 2008 16:40 by Deb Grabetz |
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Scarlett Member in Phase 3
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DEB: Thank you so much for your progress update. How very inspiring to each of us trailing in your footsteps and the footsteps of so many others. Thank you for taking the time and energy to share!!! Hope your Halloween is goolishly good this year. Scarlett |
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Deb Grabetz Member in Phase 3
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Hello All! As I reported in my weekly PR, I just celebrated the best birthday I have had in over two years!!! ...and on top of that it snowed on my birthday...I LOVE snow, call me crazy???...Must be a sign of good things continuing!    Something very noticeable as of late for me, is that I'm ramping much easier than I was in the beginning of Phase II. See my timeline below: Phase II Level 1 Began 3/2/08 Phase II Completed Level 1 6/29/08 Approx 150 days for Level 1. Phase II Level 2 Began 7/6/08 Phase II Complete Level 2 10/12/08 Approx 95 days for Level 2. Phase II Level 3 Began 10/19/08 *Currently at beginning of halfway mark of Level 3 Approx 28 days! *Would also like to note that with the ramping in Level 3, my IP is much more limited to Neuro symptoms and flank pain as compared to the 20+ symptoms that would normally occur with each ramp! Good stuff!!!!!!!!!!!! Last edited on Sun Nov 16th, 2008 20:44 by Deb Grabetz |
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Deb Grabetz Member in Phase 3
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Hello All! First, I would like to wish a Happy and HEALTHY New Year to each and every one of us! What a blessing we have all received with the Marshall Protocol! It has been six weeks since I've updated here but have been quite the busy one! Thank you Dr. Marshall for this! My contract with the airlines was expiring at the end of November, so my doc and I decided to give going back a shot! I spent three very stressful weeks back in training, some with long days both in class and at the hangar getting re-qualified. I did catch a cold that most of the class had but for the first time in many, many years it just went away without attacking my chest, which was the usual! Bravo for the MP!! No other explanation but my progress on the MP for this one!I flew all day on Christmas Eve with a supervisor to finish up my qualifications to return as a flight attendant. I left home around 7:30a.m. and my husband picked me up at 9:30p.m. at the airport...Awesome! I was tired but a normal tired that anyone putting in that kind of a day would experience. When I look back at my first alumni posts and the fact that two years ago I could barely get off of the couch I was in such excruciating pain with chest pressure, weakness and debilitating fatigue it goes without saying the progress I am making on the MP has been a gift beyond words! On Christmas morning my 30 year old son announced to our family that the best gift he could have received this Christmas was to see me getting well again! My daughter got me the cutest visor that is printed with "Stop Sarcoidosis" on it...perfect for shading my eyes during outings! My energy and ambition returning is so extremely noticeable. It feels so wonderful not to be dragging around like a drowned rat...and that is putting it mildly. I am very committed to probably another good year or so on the MP as I'm close to 3/4 through Phase II and continue with mild IP as of late-- muscle aching with my last abx dosing but at this point I am managing life again while doing the protocol. Quite an improvement from being bedridden for months!!!!!! I wish you all continued wellness...but it will only come with complete dedication and persistence on the MP! I received a great email this morning and it was about frogs climbing a big mountain...one frog after another dropped, except this one little frog who kept persevering to the top...The moral of the story was that this little frog was DEAF...and he made it to the top because he could not hear all the negativity around him, telling him that he couldn't do it! He just believed that he was going to get to the top of that mountain......... AND HE DID!!!! Happy New Year and May God Bless each of you! Deb |
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Deb Grabetz Member in Phase 3
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Update since my last post in December! It seems for me personally, that I notice my improvements, month to month. When I look back even three months ago, I see that I'm not struggling quite as much. Although I'm the type of person who is always looking "ahead", it has helped me so much to go back at times and check previous posts to see where I have been over the last two years. This really helps me to appreciate where I am at this moment! I have been back to work now for a month and realizing the progress that I've made on the MP. My main concern before returning to work was how my body would handle the flying in relation to energy levels. Flying as you know, can be a drain physically on a "well" person. Between the jet lag and long hours on our feet. But I realize now that I'm doing better than I was four years ago, even before I was dx'd with my Sarc. I tire less easily. I find that fatigue is a good symptom to track because it is one of the more obvious and measureable of symptoms. There were many times I would feel exhausted after one flight and now I do not notice this "normal fatigue" until after four flights. Four flights in one day is a lot for anyone! Being able to accomplish this still has me pinching myself...after being unable to stand for more than 10 minutes at a time without weakening and needing to lie down.... I am continually in awe of this protocol!  As far as my working schedule goes, since I carry a high seniority I am able to manipulate my work days so that I typically only do three flights per day and have longer rest periods than if I were a newbie on the line. My first day back home, I do some odds and ends around the house but typically just rest, even if I'm feeling like running around doing errands. Since I am still in Phase II, I know my body is still working hard and I want to avoid any setbacks! My motto has changed from "doing it all" and "Superwoman" to taking care of Deb first...should have adopted that motto long ago! A few weeks ago I had a tooth break off and had some work done last week by the dentist. I lean to the cautious side now when having anything done at all outside of the MP. All went well, I followed the MP suggestions with my dentist. I printed the following information months ago and my dentist keeps this on file with my records. Why do I need to ask for a local anesthetic without epinephrine? If there is any one thing that I can pass along from having followed this protocol now for over 21 months...it is to do your darn best to keep your moral up, never become discouraged and believe in what you are doing for your health. I had days that I would never wish to relive after becoming ill....complete loss of energy and ambition....cognitive difficulties....physical symptoms, many relating to less functioning organs....and yet here I am moving forward from month to month. It gave me so much hope when I started the MP to see others getting well. The MP was my ONLY hope! Many blessings to each and every one of you! Deb |
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BARNEY Moderator 
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Deb, It takes time....but it is very worth it. HANG IN THERE, WE WILL MAKE IT!!!!BARNEY |
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expate Member in Phase 3
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Good to hear from you, Deb, and that you are doing so well. I have to say I thought of you with the news of the Miracle on the Hudson. dette |
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Deb Grabetz Member in Phase 3
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Yes Barney you are SO right, very worth it! For so many years how many of us were dealing with an illness that we had no control over??? For many of us had no clue why all the underlying health issues??? Here we are recovering!!! Odette, wasn't that something? I was due to fly into LaGuardian two days after the Hudson River incident with my crew and we had a mechanical and were unable to take the flight. It was strange thinking about flying over that plane in the river---It is something we get completely accustomed to though and most of the time when I'm working I forget I'm even in the air! Funny thing how that works! |
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Michele MBK Member in Phase 2
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Deb, I'm so glad to see your post after being back to work for a month! Hurray for you! I'm also glad you were not part of the La Guardia incident. I sure thought of you that day!!!! Living by routine, eh? It's good you've got your "groove" back! Way to go! Michele |
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Deb Grabetz Member in Phase 3
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Heh Michele...good to hear from you...Thanks for thinking of me for sure...It's those good thoughts that keep us all safe...and getting well! |
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JanEE Member in Phase 3 
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Deb, I FEEL YOUR JOY!!! It is so wonderful to hear how well you're feeling. Keep up the great work. I'm also glad that you weren't involved in that plane incident, and so thankful that everyone who was made it out okay. Jan |
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BARNEY Moderator
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Deb, So glad you were not on the plane that went down. So glad everyone is okay and what a pilot and crew. Kudos to all of you who put up with us passengers. I used to think when they would give us all the same instructions on every flight we take....that why listen to the floatation device info...we're not going over the ocean...ha ha....I will listen in the future and I will remember that the back door should not be opened. HANG IN THERE, WE WILL MAKE YOU!!!!BARNEY |
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Deb Grabetz Member in Phase 3
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Hello All, (23 months since I started the MP weaning from steroids--20 months on the MP full protocol)... It has been a month since my last updated Alumni report so thought I would update! I am almost three-fourths through Phase II. My hope is to be into the last quarter sometime in March. I'm working my rampings around my days off, so it can be a little tricky at times not being caught with serious IP from ramping, but so far so good. I have been back flying now for two months and find my energy levels are good. This last week caught a cold that "everyone" has. It has hung on longer than I would have liked but just trying to rest when possible. I love the fact that I can walk, walk, walk and then realize the times not so long ago when standing for a few minutes was very challenging! I remember one night in particular, wanting to go for a walk around the block and barely getting out my front door and having to turn around I was so weak! Ah, success with the MP is surely S-W-E-E-T! Just five months ago, my daughter drove me to Louisville to see my Grandma who was very ill--it seemed like a crapshoot then for me to even make the trip--and just last week I flew down and spent a few days with her on my own. I love looking ahead...wondering what it will be like in another five months on this protocol...one thing I know for sure it is the best place I have been in many, many years and I am ever so grateful to Dr. Marshall and all those who have pioneered ahead of me... I spent over a month reading the MP over and trying to committ to the restrictions that would be required of me. I am thankful every day, that I never gave up in almost two years--for what else was out there for me or for any of us with chronic illness?? The promise of steroids giving me a few good months?? and then what?? the same relapse again and again?? I am especially grateful that I have learned so much about Vitamin D supplementation and fortified D products and how consuming these have such a detrimental affect on chronic illness. This information has been a priceless tool for me, in continuing to get well. With all of the hype that is going on about supplementing with D, it has been an eye opener to learn what it can do to those with chronic illness. On one of the sarcoidosis sites that I frequent and moderate, a member posted that her doctor had suggested 50,000IU of Vitamin D "to see if it would help her chronic illness". I still shudder each time I think of this woman's post---how irresponsible to take something as sarcoidosis so lightly and how we treat it! Fortunately for her, there were many on site who were educated about the harmful effects of Vitamin D and she was alerted. A healthy month to all of you... Deb Last edited on Fri Feb 27th, 2009 22:14 by Deb Grabetz |
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BARNEY Moderator
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You are AWESOME, you go girl!!!! HANG IN THERE, WE WILL MAKE IT!!! BARNEY |
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Deb Grabetz Member in Phase 3
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Well, here we are almost into Spring 2009! It was two years ago this month that I began weaning steroids...not only that but I was barely functioning at this time two years ago! Wow, how time has flown and what a great place I'm at today because of the MP. Each time I post, I feel so thankful, so grateful. This was from two years ago as I was weaning steroids...I've forgotten what it was like to feel this way as this week alone, I flew a four day trip, came home and entertained the next day for my Bunco club, cooked and cleaned. Unreal!
3/2009 My last ramp bit me a little harder than I expected and put me a bit behind in reaching my goal of being through Phase II-- Level 3-- but I'm close! Just sticking with the tried and true theory of the MP's "slow and steady wins the race". May we all be blessed with steady healing...I keep each of you in my thoughts! Last edited on Fri Mar 27th, 2009 16:40 by Deb Grabetz |
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BARNEY Moderator
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Hey Deb, It is great to see you doing so good. Keep up the great work!!!! HANG IN THERE, WE WILL MAKE IT!!!!!BARNEY |
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Toni D Moderator 
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Deb, I am so glad to hear/read/see all is well with you. Sometimes it's easy to forget where we came from, especially when it's not in front of us all the time. I was happy for you when you went back to work part-time, now full-time. Continue to be blessed with peace, health and wholeness, my friend. |
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Deb Grabetz Member in Phase 3
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Just a quick update! Getting very close to Level IV --Phase II. This has taken me longer than my original goal from a couple months ago but I'm trying not to push myself to intolerable IP. I'm pinching myself still, but it's a good pinch --that after two years I'm seeing that light at the end of the tunnel that those who were ahead of me on MP, promised me I would see. My IP is pretty much limited now to left kidney pain that comes and goes, ear activity, fatigue during abx ramp along with mild brain fog during ramps. New IP pops up occasionally but is resolved within reasonable time. All mild compared to where I was a year ago! I continue to be extremely cautious with Vitamin D. Wear my NoIR's only when on the computer, under fluorescent lighting and outdoors during sunny days. Overcast days I do fine without my NoIR's! I'm NoIR free at all other times, so have made considerable progress with my light sensitivity. My eyes have been such a long time issue with light sensitivity (over 20 years) that I'm hardly surprised that I'm still dealing with this---actually pretty pleased with my progress in this area. My left eye, continues to slowly improve with sight. My days are very productive----I noticed yesterday while working on the computer, how my hands were thin---there was one small area on my right hand that had a 1/2" area that was swollen but no sign of swelling anywhere else. I did not even realize in all these years that they were swollen. I was just used to them looking this way. It's pretty amazing to see this tissue in my hands normal! Thinking of you all! Deb |
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expate Member in Phase 3
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Likin' the new pic. You know, pictures paint a thousand words... or some such. |
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Deb Grabetz Member in Phase 3
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Odette, Thanks for noticing! It's me working! Thought that appropriate after being on medical for over two years. My doc is so thrilled because I'm his first sarcoid patient that he has treated in his many years of practice that has gone back to work from a lengthy medical. Cool stuff this MP! |
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Deedee Member in Phase 2 
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Go, Deb! |
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JanEE Member in Phase 3
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Deb, I also love your new pic. Wish it was larger though, as it's hard to see the twinkle in your eyes. Why are some pics so small and others are four times that size? Anyway, you're really gettin' there. Good for you. Jan |
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Deb Grabetz Member in Phase 3
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Hello! It has been a month since I last posted in this Alumni group and just a few updates to report! Probably my most exciting news came from my docs office today, with the latest update on my CRP. (C-Reactive Protein) which was run for cardiac inflammation. When I was first tested when I became ill, December '06 my CRP was off the charts. This was when I was sent to a cardiologist for a heart cath. Only to find that my arteries at that time were 100% clear. So I remember now, being sent on my merry way, with my CRP at a 9.1. Approximately 10 months ago this was tested again after being on the MP for a year and it had come down to 7.4. Anything within a range of 3-10 is considered high cardiac risk. I am very happy to say that although my CRP is still in the high range, as of my most recent test two weeks ago it is at 5.49. No matter how I look at it this is a huge improvement from the 9.1 that I started with. I remember back in '06 going into the ER and the doc there telling me he felt I had something going on with my heart. I just chuckled until he gave me some nitro and wow, what relief. Interestingly, I was sent home with the nitro pills and not much else. Even with my sarcoid diagnosis, I'm not sure anyone made the connection with what was going on with my heart. It's good to see these numbers coming down. Slow and steady...but they are surely coming down. At this rate I will be out of the high cardiac risk range in another year. Well, back to the MP reporting. I am within baby steps of getting to Level IV--Phase II. It has really been a struggle for me to get through this last ramp but I can tell that I'm very close, finally! I was hoping to be to Level IV two months ago and just kept toggling my doses back and forth to stay comfortable. Excited to get there... Take care all...you are each in my thoughts for good health! Deb |
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JanEE Member in Phase 3
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Hi Deb, This is really wonderful news. You are doing so well these days. Truly inspirational. I'm so happy for all your progress. After all your hard work it's great to see, and feel, it paying off. Jan |
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expate Member in Phase 3
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OK, why is my reply always a "ditto" to Jan's? She beats me to it every time. A most hearty congrats to your hard work paying off in better health. dette |
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Dr Trevor Marshall Research Team
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CRP is expressed with one of the body's antimicrobials. It is normal for it to be present with Th1 inflammation in any organ, although a cardiologist will try to tell you (based purely on pseudo-science) that CRP is specifically associated with cardiac function. It is not. It is asociated with the microbiota species mix. |
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Michele MBK Member in Phase 2
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Congrats Deb!! This is just great news!! Thanks for sharing those wonderful results and here's to another year of MP bringing those numbers down further and most importantly, that you continue your path to recovery and better overall health! Michele |
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Deb Grabetz Member in Phase 3
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Thank you Ladies....you sure know how to cheer a gal on...and on...and on! So....Dr. Marshall, I'm guessing that this is a good thing that my numbers are coming down??? No matter what, those high numbers are scary, scary especially since I was having so many cardiac related symptoms! My doc who treats me with the MP, said that he was running this CRP specific to cardio. Does that make sense to you?? To be honest when I was sent to the cardiologist..before my Sarc diagnosis...once he saw my clear arteries he sort of washed his hands of me and sent me on my way. Doesn't that sound familiar?! Last edited on Wed May 27th, 2009 02:12 by Deb Grabetz |
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Deb Grabetz Member in Phase 3
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Just a brief update! Next month will be two full years on the MP without a break! Mentioning that "without a break" because I have so been tempted to take a break at times, yet felt for myself I had better stick with it. I've added a third abx now which puts me into what would be considered Phase III. Got myself stuck into a neuro period where I felt like I needed to switch things around. Physical IP has really slowed up even when on high doses in Level II. Yet ENT IP like itching ears, sinus drainage continues at steady pace. Clearing chest, coughing continues also. Since adding third abx have not seen a lot of change. Do believe that my fatigue has lessened by dropping back on high levels of the abx. So far so good... My plan is to get back to walking. It seems that last fall when I started walking my overall well being was good. I'm guessing that the activity helps ease some of the arthritic type aggravation that my sarcoid can cause. Bee well! Believe that there is light at the end of this very long tunnel...for it really does exist! Deb |
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BARNEY Moderator
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Deb, "It is not about the abx, IT IS ALL ABOUT THE BENICAR" a quote from Dr Trevor Marshall. You might try Benicar 40mg/4hrs.........you will still have IPs (only milder) which might need settled by 20mg Benicar sl...........IF you do not like it, then you may choose to go back to the abx. Drink plenty of water, xtra (sea) salt (regular salt is mostly chemicals), 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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Deb Grabetz Member in Phase 3
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Heh Barney, Thanks for the note. Benicar is now bringing on more IP for me???? |
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Deb Grabetz Member in Phase 3
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July marks my 2nd year anniversary on the MP! It also marks many significant changes in my health since becoming ill in the fall of 2006. For one I was able to return to work after two years! A huge accomplishment for me Being bedridden for months, unable to stand for months didn't seem to leave much hope in ever returning to work....and yet it happened! I take a walk every night now, it helps with my energy. Yet, I remember a time, months ago, when I barely got out my front door and had to turn around, I was too weak to walk! My bloodwork has improved-- D-0, (from 12) D,1-25 18 (from 54) Sed Rate fluctuates is 25 (from 42) CRP-cardiac-- is 5.49 (from 9.1!) It is quite obvious that I am here and doing well because of the MP! This week in my progress report, I posted most recent symptoms from my abx increase, they were all mild. Mild flank pain, aching calves, parathesia in hands, rib pain. Below I've listed what "i looked like" two years ago. It's hard to believe now that was "me". I have so much to be grateful for this morning as I write my MP anniversary post and will be forever grateful to Dr. Trevor Marshall, and to those who worked so hard before me to get well and prove that there is hope to cure chronic illness. Today I smile...for all of us!Note: The following posts are from two years ago: * Tightness in chest; bronchial area *No change but less pressure. Still have trouble wearing a bra; too much pressure. * Mid back pain *Mid back pain has worsened *Hoarseness continues. Voice barely audible at times. Burning sensation in chest. * Wooziness; like my head was mildly swimming...with prominent ringing in ears. Feel a bit like a bobble head, if that's a good description of this...or like I'm swaying on a boat.. *Fatigue kicked in a bit heavier the first hour after taking. *Fatigue has worsened. *Coughing most of the day (haven't coughed in a couple of months);productive. *Couging a bit more productive than usual. Coughing up teaspoonfuls phleghm. *Pressure in my waist area, increased flank pain *Comes and goes... *Left ear itching *Activity in my right ear;drainage, pain,plugged. *Tummy activity *Leg pain *Neck pain *Mild neck pain returned *Shoulder pain *Sore throat *Heel/ankle/leg pain *Increased heart beat;cardiac symptoms. *Burping- *Runny nose *Leg weakness *A bit worse seems to tie in with my back pain and fatigue. *Body stiffness *Definitely noticed an increase in all over stiffness;we are also having some heavy thunderstorms here and question the connection. Flu-like symptoms. *Nosebleeds subsided after five days *Unable to stand for any length of time. Taking a shower pretty much wipes me out. *Sun/light exposure causes fatigue. Last edited on Fri Jul 24th, 2009 13:52 by Deb Grabetz |
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boggs1018 Member in Phase 3 
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Woohoo! So much to be grateful for. Congratulations! Juli |
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Carole Board Staff
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CONGRATULATIONS and HAPPY ANNIVERSARY, Deb! Perseverance pays, and we celebrate with you! . . . Carole |
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Deedee Member in Phase 2
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Deb, thank you for continuing to share your success story, as an inspiration to all of us who are walking in your footsteps. Deedee |
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Pipistrelle Member in Phase 2 
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Happy MP Anniversary Deb, it's so great so see your progress - and all the best for your continuing journey to full health. Morag xxx |
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BARNEY Moderator
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Hey Deb, Great report!!!! HAPPY ANNIVERSARY!!!!! Karna’s thoughts: Sometimes I just need reminding that it's not about winning the race, it's about just crossing that finish line. 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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Michele MBK Member in Phase 2
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Hey Deb! Congrats!!! You are an inspiration to so many including myself! Way to go! Michele |
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Sunbeam Member in Phase 2
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A fantastic Look down memory lane Deb and at the improvements MP can bring. Keep moving in the right direction, I am so very pleased for you, Take care, Lynn. |
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Deb Grabetz Member in Phase 3
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Many thanks for all of the responses to my anniversary update and thread. It is a wonderful feeling to be here and at this point on the MP. Know that I am rooting for each one of us on this journey...the IP continues yet the healing is evident! Beyond getting well, I think I am most of all grateful, thankful endlessly each and every day for the support that has been shown here on site to me and so many others. It is doubtful I could have managed all of this without each one of you! |
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Deb Grabetz Member in Phase 3
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Wow, how quickly the time passes, it has been three months already since I last posted my alumni progress!! Things are great...continue to be slow with my ramping but within the last few weeks I have felt better than ever. Some minor disturbances like the back muscle pain, some mild chest pressure but my energy, stamina and most of all ambition have really rebounded lately. No words to explain how this feels!!! Being such a busy person, losing those three things for so long is an emotional drain as we all know. It has been a bit of fresh air to feel so good waking up!Three years ago this month is when I started feeling unwell...and by November '06,things went downhill fast. Looking back now I realize I was feeling the chest pressure, could see the inflammation in my swollen face, was retaining fluid along with the fatigue and brain fog kicking in. At that time I had not even heard of Sarcoidosis...boy, was I in for a shock after being told, it was "just sarcoidosis". "Just"is a word that was not created to be used with Sarcoidosis! So in praise and thanks to Dr. Marshall and the MP and the heavens above, I have gone from being completely bedridden for over a year to working part-time flying and doing many of the things I was doing before this sarc flare. It has taken me three years to gain some stability, it has been a long journey but one that was well worth the committment. Without the MP, it is hard to say what life would be like for me today...it is safe to say that without the MP, there would very little quality of life and having experienced this three years ago, I am so very greatful for all that has been given to me. May each of us be blessed daily by Dr. M's work...and may we continue to heal with each passing day! Thank you Trevor! Deb |
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