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Deb Grabetz
Member in Phase 2
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Posted: Mon May 19th, 2008 12:51 |
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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..Deb
Last edited on Mon May 19th, 2008 23:06 by Deb Grabetz
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Sarcoidosis/lungs, lymph,liver, GI, neuro, D125,42, Ph1,7/07, Ph2,3/08,cover up, NoIRs, low lux home, not working, 4/07D25/11 1/08D25-0 Weaned Pred with MP/ CranialSacral weekly
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Deb Grabetz
Member in Phase 2
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Posted: Tue May 20th, 2008 12:18 |
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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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Sarcoidosis/lungs, lymph,liver, GI, neuro, D125,42, Ph1,7/07, Ph2,3/08,cover up, NoIRs, low lux home, not working, 4/07D25/11 1/08D25-0 Weaned Pred with MP/ CranialSacral weekly
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Deb Grabetz
Member in Phase 2
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Posted: Tue May 20th, 2008 12:19 |
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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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Sarcoidosis/lungs, lymph,liver, GI, neuro, D125,42, Ph1,7/07, Ph2,3/08,cover up, NoIRs, low lux home, not working, 4/07D25/11 1/08D25-0 Weaned Pred with MP/ CranialSacral weekly
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Deb Grabetz
Member in Phase 2
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Posted: Sun Jun 1st, 2008 14:59 |
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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
- Heaviness in chest X X
- Constipation X
- Irratibility X X
- Mental Fog
- Strong nausea X X
- Night sweats back X
- Flank/Kidney pain X
- Photosensitivity XX
- Sleepless night X
- Ringing in ears
- Sore throat X
Day 4- All of the above with a few changes; again all tolerable with Benicar.
Upset stomach episodes/diarrhea (Went from constipation to diarrhea) Think cheese cheating may have caused my upset stomach. X
- Heart palpitation X
- Joint pain in knees X
- Very dry eyes Day 5- Stomach has settled down today. Also carb craving is already better even though I'm still on Prednisone, I am not craving food every 2 hours like I have been over the last three months-- Yes, I have 18 pounds to take off!
- Middle back pain Scale 7-8 joined the list.
- Seem a little clearer headed today; mildly noticeable. Have to be careful though because I seem to get a little energy and then try to eat up my energy too fast. I can take the pain for the most but have the most trouble with my fatigue.
- Some wax and wane of Day 3 symptoms but all about the same.
(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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Sarcoidosis/lungs, lymph,liver, GI, neuro, D125,42, Ph1,7/07, Ph2,3/08,cover up, NoIRs, low lux home, not working, 4/07D25/11 1/08D25-0 Weaned Pred with MP/ CranialSacral weekly
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Joyful
Research Team
| Joined: | Sat Jun 9th, 2007 |
| Location: | West Coast, USA |
| Posts: | 561 |
| Status: |
Offline
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Posted: Mon Jun 2nd, 2008 05:56 |
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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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Lyme Babs Bart - 125D50 Ph1Jul07 ModPh2Sep07 Ph2Feb08 Ph3Aug08 - cal/mag lysine hydroxyzine valium - rarely leave house NoIRs cover up low lux home - 25D17 Jul08
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Deb Grabetz
Member in Phase 2
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Posted: Thu Jun 12th, 2008 13:51 |
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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 Zith, 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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Sarcoidosis/lungs, lymph,liver, GI, neuro, D125,42, Ph1,7/07, Ph2,3/08,cover up, NoIRs, low lux home, not working, 4/07D25/11 1/08D25-0 Weaned Pred with MP/ CranialSacral weekly
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Deb Grabetz
Member in Phase 2
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Posted: Sun Jun 22nd, 2008 15:21 |
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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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Sarcoidosis/lungs, lymph,liver, GI, neuro, D125,42, Ph1,7/07, Ph2,3/08,cover up, NoIRs, low lux home, not working, 4/07D25/11 1/08D25-0 Weaned Pred with MP/ CranialSacral weekly
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Deb Grabetz
Member in Phase 2
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Posted: Mon Jul 14th, 2008 11:33 |
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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.
Each of us has cause to think with deep gratitude of those who have lighted the flame within us."
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Sarcoidosis/lungs, lymph,liver, GI, neuro, D125,42, Ph1,7/07, Ph2,3/08,cover up, NoIRs, low lux home, not working, 4/07D25/11 1/08D25-0 Weaned Pred with MP/ CranialSacral weekly
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Deb Grabetz
Member in Phase 2
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Posted: Sun Aug 3rd, 2008 17:18 |
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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 17:27 by Deb Grabetz
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Sarcoidosis/lungs, lymph,liver, GI, neuro, D125,42, Ph1,7/07, Ph2,3/08,cover up, NoIRs, low lux home, not working, 4/07D25/11 1/08D25-0 Weaned Pred with MP/ CranialSacral weekly
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Dr Trevor Marshall
Research Team
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Posted: Sun Aug 3rd, 2008 17:58 |
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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 2
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Posted: Mon Aug 4th, 2008 01:08 |
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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*! Deb
Last edited on Mon Aug 4th, 2008 01:09 by Deb Grabetz
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Sarcoidosis/lungs, lymph,liver, GI, neuro, D125,42, Ph1,7/07, Ph2,3/08,cover up, NoIRs, low lux home, not working, 4/07D25/11 1/08D25-0 Weaned Pred with MP/ CranialSacral weekly
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Deb Grabetz
Member in Phase 2
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Posted: Sat Aug 16th, 2008 15:33 |
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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 Sat Aug 16th, 2008 20:15 by Deb Grabetz
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Sarcoidosis/lungs, lymph,liver, GI, neuro, D125,42, Ph1,7/07, Ph2,3/08,cover up, NoIRs, low lux home, not working, 4/07D25/11 1/08D25-0 Weaned Pred with MP/ CranialSacral weekly
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Deb Grabetz
Member in Phase 2
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Posted: Tue Sep 9th, 2008 20:42 |
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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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Sarcoidosis/lungs, lymph,liver, GI, neuro, D125,42, Ph1,7/07, Ph2,3/08,cover up, NoIRs, low lux home, not working, 4/07D25/11 1/08D25-0 Weaned Pred with MP/ CranialSacral weekly
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Scarlett
Member in Phase 2
| Joined: | Mon Mar 3rd, 2008 |
| Location: | Ohio USA |
| Posts: | 41 |
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Posted: Wed Sep 10th, 2008 16:13 |
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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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Sarcoidosis, gastric paresis, osteopenia, hypotension, migraines, dry eye,insomnia, transient global amnesia, initial (2/08) 125D48, 25D58, 4/18/08 25D37, 6/5/08 25D 30, 7/22/08 25D 32 MP-3/3/08, PhaseII-3/28/08 Ambien, NoIRS, low lux home & work, lt
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Deb Grabetz
Member in Phase 2
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Posted: Mon Sep 29th, 2008 22:11 |
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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 Mon Sep 29th, 2008 23:43 by Deb Grabetz
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Sarcoidosis/lungs, lymph,liver, GI, neuro, D125,42, Ph1,7/07, Ph2,3/08,cover up, NoIRs, low lux home, not working, 4/07D25/11 1/08D25-0 Weaned Pred with MP/ CranialSacral weekly
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Dr Trevor Marshall
Research Team
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Posted: Mon Sep 29th, 2008 22:14 |
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expate
Member in Phase 2
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Posted: Tue Sep 30th, 2008 02:05 |
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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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Hypervitaminosis D 1,25-D 52 pg/ml, 25-D 38 ng/ml (4/08), 25 - D 34 ng/ml (8/08), started Ph1 7/17/08, Covered up. NoIRs. Home low light.
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Deb Grabetz
Member in Phase 2
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Posted: Tue Sep 30th, 2008 19:58 |
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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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Sarcoidosis/lungs, lymph,liver, GI, neuro, D125,42, Ph1,7/07, Ph2,3/08,cover up, NoIRs, low lux home, not working, 4/07D25/11 1/08D25-0 Weaned Pred with MP/ CranialSacral weekly
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