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Aussie Barb
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Posted: Mon Sep 11th, 2006 16:04 |
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Marypat wrote: re Anxiety ... I have a life again. Nov 28th, 2005
For years [about 20] I felt great anxiety [as though I would jump out of my skin] all the time. Also, I spent a lot of time depressed and teary [for no reason].
I've been on the MP for 1 & 3/4 years and recently except for the occasional herx in this area, I have none of the previous awful pervasive feeling of anxiety or the overwhelming depression/teariness.
Two weeks ago I had 4+ hours of this 'anxious' {herx} [almost like it were part of every cell in my body] feeling. I can't believe I used to live like that all the time.
Last summer [of 04] I had weeks of {herx} depression so bad that I wanted to quit the MP for at least a few weeks to give myself a break. I was encouraged to continue the MP and did. It finally stopped. Now I have occasional short times of being down that I am sure are herx.
I know that the loss of these debilitating symptoms is due to the MP.
 Three Cheers for Dr. Marshall, Meg, Belinda, Barb and all the wonderful selfless volunteers! I have a life again.
Marypat
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Marypat: Sarc-biopsy 1977 no pred. ITP; Type II Diabetes
Hashimoto's (no med now) 5/03 no sun exp./Vit.D-diet & NoIr 6/03: 25-D 17, 1,25-D 44; 12/03: 25-D 10, 1,25-D 23; 12/04: 25-D 12, 1,25-D 32. 10/03-30mg Ben. tid mino.qod. Ph.1 -3/04-6/04 Ph.2 -6/04-9/04 Ph.3-9/04
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Aussie Barb
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Posted: Mon Sep 11th, 2006 16:06 |
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2bonnie wrote: I feel the LIFE returning, yes even through the herxing, I feel the life, my life returning.... Dec 1st, 2005
greetings,
I am a real person with a real disease called sarcoidosis. I had my colostomy in 96 prior to my sarc diagnosis.
I was diagnosed in 1997, put on prednisone, which is the standard for the band aid that big money pharmacological mega companies provide for the relief of this disease in order to breathe.
Because of the misinformation about this disease which you can find on webmd, which includes that only certain ethnic backgrounds get this disease (of which I am none) and the lie that it will BURN ITSELF OUT..
yeah after 2 yrs of prednisone, I could breathe,
but I also gained 150 lbs,
became diabetic
and ended up in a wheelchair
with a colostomy.
I have been on this protocol for less than a year, and am having dramatic effects.
*I have lost over 100lbs,
*no longer take glucovance for diabetes
*nor the high blood pressure meds,
*oh yeah and I got glaucoma too, which I no longer have.
*Now I am out of my chair,
*my lymph glands which are the positioned under the heart/above the kidneys are no longer inflamed,
*this time last year I was on 80 mg oxycontin 3 times a day now I am on 20 mg 2 times a day,
*my pulmonary Dr. is astonished, as I went from a oxygen 24/7 at a O2 of 84 to 96,
my Pulmonary specialist says your lungs don't come back from that unless it's a miracle,
There are many patients who are like me that were close to death and now have life,
My family was picking out the colors of my clothes to bury me in when my son found this site,
I feel the LIFE returning, yes even through the herxing, I feel the life, my life returning....
sincerely
Bonnie
Thanksgiving Letter
ADD: December 6th:
am feeling extremely well,
am tolerating cigarette smoke of others where before was EXTREMELY intolerable,
also accidently forgot to put on oxygen and fell asleep on couch, but woke up on my own several hours later, it's absolutely incredible how I am feeling.
p.s Feel that mindset and not dwelling or telling anyone new in my life about my dis-ease is major factor in my seemingly miraculous healing,reaffirming this by having pictures of myself in happy times on frigerator, cabinets, only waqtching positive shows on t.v helps lots as opposed to watching the law & order shows, I now only watch the animal planet,discovery, and the wisdom channel which onlys shows positive healing techniques, book reviews ect.
I hear&see people in my dr.s office,everyone kinda looks at you with this sickness in their eyes, then theres me, smiling talking to those who look the saddest, (excuse me, you really look down today, but the color your wearing really just is beautiful on you, or you know you don't look well today but I can see that you gave the ladies a run for their money when you felt better ,your still quite a looker for a man your age.
It broke my heart when dr. told me that I was so close to death, that seems so long ago.............loving yourself so that you can pass that seed onto others is really a win-win situation,one I am finding can and is saving my life, so don't worry........just be happy  blessings for your work 2bonnie out
Poem: Dedicated to those who have learned how to moondance
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2Bonnie: Dx: Sarcoid97 / diabetic anxiety weight loss bad pain/ O2 2L sleep
beni40mgQ6H June05 / NoIR/ avoid light&D/ avinza percoset quinine magnes ambien/ 1,25d-133.3/ 25-16.9/ tested aug16/05 orig.#25-33.7/ 1,25-49.5/ taken3/05/ fibromayalgia cardiac herx
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Aussie Barb
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Posted: Mon Sep 11th, 2006 16:09 |
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KenC wrote: Crohn's Disease.. noting improvements on MP. Dec 7th, 2005
Since beginning the Marshall Protocol I noticed the following conditions disappear:
1) candida infection on the corners of my mouth
2) heartburn
3) arthritis in my hands.
I used to be able to induce cramps in my hands simply by squeezing hard on something for a minute or two. No more.
I'm using the MP to treat Crohn's disease. I've had Crohn's disease for over 25 years and I have not yet had any surgery. However, my gastro told me there is nothing he can do at this point other than to remove my colon. It has inflammation and ulcers throughout. My illeum mysteriously healed itself. The activity in my illeum is mild.
The MP has enabled me to get almost totally off steriods (2.5 mg hydrocortisone or 0.5mg prednisone), something I have not been able to due during the last 5 years. I normally need 15-20mg of prednisone to stay out of the hospital.
If I were you I'd get on the MP ASAP.
I recently learned about the value of sleep when following the Marshall Protocol. I took one week off work. I slept about 12 hrs each day. What a difference!
Normally, I get about 7 to 7.5 hours sleep each day. With the extra sleep, I have less brain fog, much more energy and just feel better all around. With this much sleep the herx has become much more tolerable.
Now that I'm back to work I try to get 10 hours sleep on weekdays and 12 to 14 hours sleep on weekends.
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KenC: Crohn's Disease 1984, vit C timed release 2g/day, 2.5mg hydrocortisone/day, 6Sep05:1,25D=27 & 25D=12, avoiding bright light and vit D, NoIR 2%,10%&40% 02Aug05 , Beni 12Jul05 Q6H, Mino 27Sep05 QOD
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Aussie Barb
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Posted: Mon Sep 11th, 2006 16:10 |
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smccavanagh wrote: CFS Progress - My GP couldnt get over how well I looked... Dec 8th, 2005
I have more energy and am able to go to the gym for a light weight work out 3 times a week- that is progress!
I have filled out the questionnaire about moving to phase 2 and have gone to my GP in preparation.
My GP hasn't seen me for about 2 and a 1/2 months since the early stages on the MP and he just couldnt get over how well I looked- he wasnt just saying it- he just kept staring and telling me that I better start recording my progress by taking pictures because he says that the changes for the better in my physical appearance are staggering!
He has gone from a reluctant participant in prescribing for the MP to saying that he is going to go to the website himself and read up!
Suzanne
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Suzanne: CFS, D tests June 05 25D=32.8 1,2D= . avoiding light and D, wearing NOIRS, Benicar 20mg q4h 26 Aug 05, mino q48h 25 mg 10 Sep 05.
100 mg 22 Nov 05.
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Aussie Barb
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Posted: Mon Sep 11th, 2006 16:18 |
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jillbc wrote regarding her husband the Fisherman: List of improvements. feeling so much better.
Dec 11th, 2005: wrote
-Last night was the best sleep he has had in months.
-Overall, he is not as fatigued as he was,
-he is not coughing as badly and some days very little,
-his appetite is coming back,
-his blood pressure is up a little,
-his skin sarcs are bearly noticable.
-He spends much more time on 3L of oxygen than before and
-can move about without having to raise the amount all the time.
And then there is the biggie.
-On Friday he felt so good he went outside and drove his tractor. He has not been able to do that since spring. A buddy came over and they were out for about 3/4 of an hour "putzing" about and doing small jobs, like getting his snow tires and moving some ladders. Did he ever feel great after that. Such a sense of freedom after being confined to the house and car for so many months. Yea !!
So now we head into new waters and see what he trolls up on this 100mg lure.
Take care, our thoughts are with everyone as we travel these rough herxy waters, Aren't we so lucky to have such an excellent captain and crew.
Mar 17th, 2006 wrote: Day 146 on MP, feeling so much better .....
Milestones this cycle: He went into the local mall and walked around for about an hour without oxygen; went for lunch without oxygen for 2 hours; inadvertantly, went without O2 for 2 1/2 hours when we went out for dinner (he didn't realize that his tank was turned off); can sit watching TV or on computer for 3 -4 hrs with no O2.
Compare this to last October when he was on 4-6L of O2 continually and when he coughed we had to put the output up to 8 of 10 Lpm. That is as much output as you can get from 2 home oxygen concentrators.
We reported earlier on his decreased D levels and we were pleased with that. His sensitivity to light has decreased so much that he sometimes forgets to put on his dark glasses. Not good but a good sign.
Along with the decrease O2, his activity level is higher, his interests are broadening and he wants to do more things. He is planning ahead and looking forward to the future. Yeh, we're gonna have a life again.
jill and the fisherman 
see also
Fisherman Update
previous improvements post
1 year update
TRANSPLANT talk (preMP)
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Aussie Barb
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Posted: Mon Sep 11th, 2006 16:25 |
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Ival wrote: re RA improvements..8 months ... I am starting to be able to function ... 1 year.... I can actually feel myself getting better.
Dec 15th, 2005 wrote:I am starting to be able to function through the herxing. We have a big stock car race the first weekend in December last year I felt so bad I was not even going to go but my friends made me go. All I was able to do was set in my truck with the heater on I think I got out one time and they road me around in a golf cart to look at the cars before the race.
This year I was able to go to all three days without any problems. I did not get to work on any of the race cars like I used to but that's gonna be one of my goals for next year. I was able to jump up and I do mean jump in the back of my pickup truck and watch the race from the pits with my friends it was great. Looking forward to starting phase three in a few weeks. |
Apr 12th, 2006: Today is my one year anniversary on the MP and it is already hard to remember what my life was like before I started. I remember how close I came to not going to the conference last year because I felt so bad. I think that will always be the best decision I ever made in my life. I don't see how I can top it.
It's been a hard year of herxing but it is so much easier than the previous years of seeing myself decline. What makes it easier is you can actually feel yourself getting better. I don't know how many times I had friends and family ask me how can you keep doing this you look worse. The answer was always the same because I can feel it working. Even in some of the worst Herxing you can still feel it working well all right most of the time.
The hardest part so far was in phase two at the level when I started getting a lot of penetration in my joints. It was hard balancing the penetration on one side and protecting your joints on the other but with a lot of practice on adjusting the abx I made it through. I never could have done it without adjusting that dosage several times. After I made it through that level is when I improve the most.
Phase three at times have been pretty hard but the abx is a lot easier to control at least it has been for me. I think I am going to celebrate my one year anniversary by increasing the abx since my herxs have all became manageable. That is after I go out to eat and celebrate tonight.
Reading all the posts was so important for me at the beginning. There was a lot of days when I would go to bed thinking Carol is feeling better, Robert's doing good it won’t be too much longer and I will get there. Everybody here will never know how much you have all helped me get through this.
Thanks to everyone involved in this protocol that definitely includes all the people that have taken time to post about their journey to health. This is definitely the biggest breakthrough in medicine.
Thanks Ival
see also:
Ival: RA: Here is my little speech I gave at the Los Angeles conference
Ival: RA: I've got my life back
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IVAL: RA:Started MP 4/12/05/ Benicar/Q6h/ 4/26/05/mino100/Q48h 25-D 13ng/ml/125-D44pg/ml/Ph2/june1 diag/RA/2001/Male/46/Probiotics/vitamin/C/
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Aussie Barb
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Posted: Mon Sep 11th, 2006 16:28 |
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livitup wrote: re improvements.. Lyme, Myasthenia Gravis, Interstitial Cystitis, Diabetes Insipidus, Migraine. I feel myself very slowly coming 'back to life' again. I have no doubt that the MP has saved my life.
Dec 19th, 2005 wrote: For years I used to have so much trouble sleeping--only 3-4 hours at a time, if lucky, sitting up. When I started MP, I'd tire out by 11 am, then noon, 1 pm and so on, napping in early afternoon. Now I can't stay awake past 8 pm even if I catch a good nap during the day. I fall asleep, wake up and fall back to sleep until 3 or 4 am. I am just starting to wake up feeling 'refreshed' for a few hours before the fatigue feeling kicks back in.
Haven't had a migraine in weeks (used to have them in 4-day blocks every 2-3 days) so this is a great blessing. I only get mild headaches for 4 days whenever I change any of the meds.
Haven't had any multiple yeast/fungal problems which was a major concern being on antiB's since I was plagued with them non-stop for many years no matter what diet, meds or supplements I was put on. This, too, is a great blessing.
My extreme light sensitivity and peripheral motion sensitivity isn't as severe, the 'shadow vision' is almost non-existent now. Yeah!
hope definitely prevails!!!
Feb 11th, 2006: I feel myself very slowly coming 'back to life' again.
I feel myself very slowly coming 'back to life' again. I'm still quite fatigued, but no where as bad as I used to be.
-I was able for the first time IN YEARS drive myself to the supermarket the other day, shop, drive home and put all the groceries away! That is an absolute milestone.
This is the first time I've upped my meds and not gotten a headache. That is another absolute milestone. My joints and muscles are still pretty sore, but I am more active so it's worth it! Still have bouts of parasthesia with hands and feet, but not as painful as in past. Even managed to vacation with husband and friends for a few days without suffering too many sunflares or setbacks.
Apr 10th, 2006: I have no doubt that the MP has saved my life. I feel so fortunate to have found this access and to be a part of the MP community. It is revolutionary. It is medical history in the making. It is 21st Century. Where else can you find free access to such indepth tutorials concerning your own disease processes, to take part in a clinical break-through study, gain some control over your recovery, obtain free access to medical professionals, allow a forum for medical professionals to exchange information, and a forum for fellow patients to share their lives and give hope, strength and moral support to one another?
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Linda-port implant Dx:Lyme, MG, IC, DI, Migraine, IB/GERD/Bar.Esoph, Osteo, Raynaud's, Sjogren's, chron.yeast Meds: DDAVP, probio, 8/27 Benicar 40mg Q6hr, 9/10 Mino 25mg, 11/13 Mino 100mg, Aug 25D-22,125D-42, Nov 25D-10, 125D-34.3, CutD/ light exp./ NOIR, 12/17-Ph2
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Aussie Barb
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Posted: Mon Sep 11th, 2006 16:33 |
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edj2001: Gene: sarc-neuro: Everything is going the way MP said it would. 
Member in Phase 3
Dec 20th, 2005
Over the past couple years I have experienced increasing pain in the joints of my hands. About a week after I started benicar (before mino) this pain intensified to the point where i couldn't even take the lid off a jar that had already been opened. This lasted 3 or 4 days but now has cleared up to the point where I may be better than new. Looks like I have both met and said good by to my first herx (Will Rogers said: "I never met a herx leaving I didn't like").
Everything is going the way MP said it would. However, were not done yet, there are still several other inprocess herxes that i have yet to say good-by to.
more: This PM i took a 2 hour nap and was able to get into a "deep" sleep that i haven't seen for a long time. One of those that you feel like your are climbing out of a very deep place to wake up. I always said my biggest problem was not getting restful sleep. Sooo, glad to see it coming back! Feel great after it!
Gene
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Gene: Sarc 98 A Fib uveitis skin cancer basal/melanoma benin colon tmr bph| proscar 5mg q24h digitex 0.125mg q24h propafenone 150mg q12h clarinex 5mg q24h armour 60mg q24h| Dec05 Benicar Q6H; D tests (1,25D/25D)11-05:50/41; 5-06:32/24; 7-06:-/11 avoid lightD
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Aussie Barb
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Posted: Mon Sep 11th, 2006 16:36 |
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Guss Wilkinson wrote: Phase 3 doing well.. Dec 20th, 2005
Hi All
I’d like to start off by wishing you all a very Merry Christmas and a great and healing New Year to all MP’ers and to all the fantastic life saving and life restoring MP staff.
I reported last time that I had suffered from a herniated cervical disc. After numerous physiotherapy sessions including neck traction, I am more or less restored to normal. A little numbness in my left hand remains, and a little reduced strength remains – but all the clumsiness in that hand has gone as has all the pain…fantastic!!
The other interesting thing is that I tried the last phase 3 combo and I really didn’t get much herx at all (except for the herniated disk…if that really was herx related?). I stuck it out for a while, nearly three months in fact – and nothing dramatic happened at all.
I thought: “Is this it? Am I really done?” But I couldn’t really be done as I still had a few spots of psoriasis left, so some bugs must still be there.
So about three weeks ago, I started back at the first phase 3 combo and I was quite surprised at the strength of herx that I got from it…
…now when I say strength of herx, it is all relative of course. It was nothing that cramped my style at all…just a quite noticeable return of chest herx and sinus herx.
-My fitness is returning regardless and I am able to train harder than I have done in many years. Our karate club continues to thrive and we have just recently graded another five students to black belt – a really satisfying achievement.
-I have no emotional herx,
-no fatigue at all and
-no insomnia
– in fact my energy levels are very high indeed.
-I haven’t had a single kidney stone attack since phase 1.
My family are still holding their breaths for some sort of relapse, but they are finally starting to believe that it is all for keeps this time – fingers crossed.
I am still a little light sensitive in the eyes, so dark glasses are still a part of my image – but I do venture out into the sun at times to play with the kids with minimal consequence.
We will be spending Christmas at the beach at the Bay of Plenty this year with lots of good food, drink, family and friends…and to think that in 2002, I thought that my days were numbered.
Thanks again everyone – stay safe and be happy!
Cheers
Guss
Guss My MP experience
Guss Insomnia
Guss exercise questions
Guss Sarcoidosis Update
Guss summary of MP
Guss psoriasis
Guss Sarcoidosis Psoriasis:3 years progress
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Guss: Dx Sarc May 2002 Stage 2. Estimate Sarc since 1987. Lungs, Joints, Kidneys & GI. Two failed Prednisone courses. (Started MP: Oct 2003 - D25...31ng/ml, 1-25D...76 pg/ml), Phase III since July 2004; BP 100/60. Ony mild herx at the moment! Wife also Dx
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Aussie Barb
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Posted: Mon Sep 11th, 2006 16:39 |
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jillian wrote: Miracles have happened in the past 24 hours: PulmoSarc'79 FMS CFIDS Dec 21st, 2005
1. I slept 7-1/2 hours, deeply and straight through the night last night without having to get up to urinate! I literally cannot remember that happening ever in my adult life!
2. My doc THANKED me for bringing the MP to his attention. And he's going to do the MP with my severly-disabled-with-fibromyalgia room-mate! (For those of you who are new, it took me three years and half a dozen docs before I found one who would do the full MP with me.)
Sigh, life is gettin' better and better. I still marvel at the thought/feeling that I'm actually getting WELL, it's only a matter of time. All that lies between me and sound health is time (and patience  ).
As mentioned above, yesterday's doc visit went well. Don't seem to have any sun/light flare problems (did Beni q4h yesterday). I did notice that my vision was much clearer--I may be able to renew my driver's license this year after all without needing new glasses. Also I've been able to sleep on my back for a few days. I've only been able to sleep on my sides for years as I had too much spine/muscle pain to sleep on my back.
'til later,
Jillian
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Jillian: Primary DX: PulmoSarc'79,FMS,CFIDS,etc; disabled since'93; 10/02:ACE=61, 1,25D=42, 25D=27 NOT FROZEN; D avoidance/Noirs,etc. since 2002; 04/05:ACE=77, 25D=10; 07/05:1,25D=26 FROZEN. MP started 10/10/05: Beni 40mgQ8h; 11/17/05 Mino 100mg q72h.
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Aussie Barb
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Posted: Mon Sep 11th, 2006 16:43 |
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Julia wrote: re OCD Six months on from this discussion, I thought I would add an encouraging update.
In July 05 I wrote
Although I no longer seem to suffer from OCD, I have in recent years developed a serious phobia about big things overhead - I can't even walk under a heavy chandelier.
This got worse. The big things didn't have to be directly overhead, and if I had to go near them I felt really nauseous.
The worst was a huge 'sculpture' (for want of a better word) like a cross between a massive dunce's cap and a half-furled umbrella, that hangs two floors high beside the stairwell near my endocrinologist's clinic. I can't avoid passing it to get there, though I always take a route that doesn't go directly underneath it. It got to the stage where I was slinking along the far side of the corridor with my hand up to my eyes like blinkers. I wouldn't have been surprised if the 'men in white coats' had come to take me away to the psychiatric ward!
Dec 21st, 2005:
The improvement came fairly suddenly over the last month or so. The Christmas decorations went up in our mall, with a huge Santa sleigh and galloping reindeer hanging from the ceiling. I found I could go underneath them - I couldn't last year. My DH was amazed. "Hey," he said, "you're not meant to be able to do that!"
The real test was today's appointment with my endocrinologist. I didn't care about the blood tests - I wanted to see the dunce's cap that I've had nightmares about for two years!
I was able to walk past it normally, and even stopped and studied the weird thing. Still not able to go underneath it yet, but such an improvement!
I'm more convinced than ever that
- the phobia is caused by bacterial infection
- the MP is dealing with it
- the worsening was herx
- eventually I'll be completely free from it
 Julia
December 2006:
My triumph yesterday was the giant hanging sculpture I pass to get to the endocrinologists department, that used to have me terrified sick. I walked right underneath it and even looked up under it, and thought to myself, wow, that's big - just the way normal people must do all the time.
see also:
Julia: Sarcoidosis: If I hadn't done MP...
Julia: Sarcoidosis: MP Twenty months on, steadily getting better
Julia Sarcoidosis
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Julia: Sarc dx 4/03, uveitis, hypercalcaemia. No Pred. MP via GP. Light/D restriction 8/03; Mino 2/04; +Beni 5/04. Phase2 8/04, Phase3 11/04. Beni40mg q8hrs. 25D 6/06: 9.2
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Aussie Barb
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Posted: Mon Sep 11th, 2006 16:46 |
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Catlady wrote: "If you start now, you will have a degree. otherwise the years will still have gone by and you will not not have achieved a dream that you could have achieved if you had only just started...." Lately I feel like I am really starting to beat this illness. Dec 24th, 2005
Well Right now I am in more of a philosophical mood than a symptom-reporting mood.
On the philosophical front, I am coming up on one year on the full MP and so have been reflecting on my progress. I have to admit when I started the MP I thought by now all the hard work would be fully behind me, and it would be smooth sailing from here on out.
Progress is slow, but I am herxing plenty and know I am getting there. I follow the light and diet recommendations very closely, and have been rewarded by finally getting my 25-D down.
In the past few months I have had to make changes and lower abx doses because I was herxing hard. I wondered if it was because 25D had finally come down. Turns out it had, whether or not that is the cause of the harder herxing requiring lower doses...
As my one year anniversary comes closer, I just find myself so happy I decided to start when I did. After all, the time would have gone by regardless. I have spent the time working toward health instead of just treading water.
I am reminded of an anecdote I first heard some years back:
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A person who has always wanted a college degree says to the admissions counselor “I am already 35 (or however many) years old. If I start working on my degree now I will be 39 by the time I am finished. I am just too old to start!”.
The counselor says back, “Well, and if you start now, when you are 39 you will have a degree. Or you can not start, and when you are 39, 4 years will still have gone by and you will not not have achieved a dream that you could have achieved if you had only just started”.
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I remember when I first read this, to me it was a very powerful observation, because you so often find people who have this “it’s too late for me” attitude.
How I feel about the MP is that yes, it takes a “long” time, in comparison to just covering up symptoms as best as I can, with supplements and other treatments, and maybe getting some short-term relief.
But the time will go by anyway, and at the end of the MP, I can have health! It will take some work, just like getting the degree would, but at the end of the time I will have something very valuable.
And I have a high degree of confidence that if I stick with it, I will achieve victory, because so far all has proceeded as predicted, and I have had quite a few small victories already.
Today I printed out what Dr. Marshall said regarding the length of time to recover from CFS (by the way, my current doctor told me I may well actually have Lyme/borreliosis, but since the MP will work for that as well, we have not bothered to test for it):
Why does the MP appear to be taking longer to resolve Lyme/borreliosis and CFS than sarcoidosis?
I think that, in general, CFS and Lyme patients have had more long-term intervention from supplements and pharmaceuticals than many of the sarcies. Additionally, their disease is not as apparent as, for example, Lupus or Sarcoidosis, and this means that they generally are more ill before they get help. A sarc patient, for example, may die of pulmonary insufficiency or cardiac arrest before their overall systemic organ status degenerates to that of some of the CFS and Lyme patients.
And also: "I do think it is important that CFS and Lyme patients do face up to the extent of their illness, however. Think about this - it takes 2 years or more for the bacteria to be killed, at the fastest rate your body can kill them. It is absolutely amazing what that quantity of bacteria must have been doing while they were living in your tissues  "
..Trevor..
===========================
It takes time to kill the intracellular bacteria and neurological inflammation is especially resistant because nervous tissue is poorly perfused by blood. The folks who are the sickest will need to be very patient because their inflammation is so extensive and it isn't possible to kill the bacteria rapidly without intolerable Herxing.
This quote will be posted at my desk, along with a few others that I use to inspire me. Some may find it depressing, but I find it empowering, as the two or more years will go by anyway, so I might as well make the best use of them!
Lately I feel like I am really starting to beat this illness.
Best wishes to all,
Catlady
____________________
Catlady: CFIDS 25 yrs dx'd 2001; chronic pain migraines; 11/04 25D=21, 12/04 1,25D=48; 5/05 25D=23 1,25D=54;12/05 25D=10 1,25D=37; 12/05 Beni 20mg Q6H; Mino 1/05; Mod PH2 5/05; Q TID K-creme Gabapentin 600 mg TID
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Aussie Barb
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Posted: Mon Sep 11th, 2006 16:49 |
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Chris wrote: Your children are more at risk from associating with you and your sarcoid than they are from a few days in the dark.
in reply to: The MP places some difficult decisions in front of you (as everyone here knows). It says stay out of the sunlight but with two young children it makes it difficult....
 Dec 30th, 2005 My kids were 1 month and 5 years when the fevers hit with sarcoid. They were victims of 1) an often missing-in-action parent and 2) associating with the victim of an infectious disease, though we didn't know about the infectious part at the time.
It's been almost a year since I entered phase II. People are starting to notice that I'm getting better, but they still only see me on the good days. After twenty years of going downhill, 3 years to get better is ok. If they'd given me the choice of a 3 year recovery back in '83, I'd have turned it down in favor of prednisone, but not if they'd been at all honest about the real effects and prognosis of using prednisone for sarcoidosis.
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Chris: sarcoid diagnosed 1991, probably started 1983
D25/1,25: Mar04 17/80, Sep04 12/50, Nov04 8/23, Jan05 9/39 May05 6/27; in phase3; fevers, muscle pain, tinnitus, depression, mental-fog, IBS, carpal-tunnel, fatigue
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Aussie Barb
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Posted: Mon Sep 11th, 2006 16:56 |
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P.Bear R.N. wrote: LYME: MCS: There is more than a light at the end of the tunnel... Improvements
Dec 31st, 2005: I believe I have had a Borreliosis since 1963. Before starting the MP I was lucky to drive 20 miles, and then I would have to lie down for 30 min my brain would be so fried.
I have been on the MP since last Feb and
-now I can drive a couple hundred miles.
-I no longer have blurry vision
-or terrible facial pain, and
-my other pain in spinal cord and shoulder is improved.
-My peripheral neuropathy has stopped getting worse,
-I am less fatigued and
-my MCS is a bit better.
There is more than a light at the end of the tunnel, there is a big bon fire with healthy people dancing around it. P.B.
Mar 16th, 2006: Improvements:
-In general I feel I am moving along nicely. I have stopped awakening in the middle of the night with my arm asleep or my fingers numb. This has been going on for over twenty years.
-I have noticed the burning in the soles of my feet is less, and
-I have a bit better sensation in my finger tips. Used to be I would sometimes cut my finger and not always know until I saw the blood.
-I can now sit up longer without lower back pain.
-I continue to be able to drive without having loss of control of my hands grip strength, before would grip the wheel with both hands grasping so hard it would hurt but I could not stop.
-Used to have trouble with position sense of hands (proprioception) when driving and could not use radio because of this difficulty. I can now actually sometimes relax in the car not being dizzy and can drive with one hand even much of the time.
-I went to a movie on a Saturday night and did not have to leave because of perfume and cologne, although I was still bothered by it some. I have not even attempted this for a long time.
I still feel poorly much of the time with herxing, and miss being outside more; but know I will eventually get out. all for now, P.B.
Aug 17th, 2006:
-I noticed the other day that I was actually having fun driving on curvy country roads like I was a teen-ager in a go-cart. I have dreaded driving for so many years due to its brain scrambling effects and my dizziness that I never thought I would get this back. By next year I may be able to break out my old motorcycle.
- I have never been able to put my pants on one leg at a time, but have to sit and put both legs on at the same time. Yesterday I actually put my pants on one leg at a time without falling.
Before long they may declare me to actually be a human  P.B.
Dec 06:
I am back to needing the 10 hours of sleep from the 9; but it still beats 12 hours.
My light sensitivity is a bit better for my eyes; very slow progress but progress nevertheless.
I noticed I handle stress much better than I used to, but the stress did dampen my herx as one might expect. My recovery from the stress then took less time than usual.
My right shoulder has not been bothering me very much at all as of late, and
I can actually throw a ball weakly overhand now. Watch out Nolan Ryan, here I come. P.B.
January 2007:
My motion sickness got so bad I had trouble just driving to and from work 15 miles away. Sometimes I would even have to pull over and do it in spurts. Then I needed to lie down for half an hour.
The MP has been the only thing I have tried that actually worked, and I struggled with every known remedy and med that might help. Now I can drive 300 miles, and I no longer get blurry vision every late afternoon if driving.
If these two things were the only benefits I got, then the MP would have been more than worth it. Eliminating my facial pain, numb fingers, chronic sinus problems and bronchitis (etc): who on earth could have believed all these were connected to the same root cause? My allergist and neurologist are curious, and now I don't even need to see them any more. best, P.B.
February 2007:
MCS improvements. I can get gasoline without much problem now and go to restaurants and movies with less symptoms. It has been some time since I have had an acute upper airway reaction to fragrances or VOCs. best, P.B.
____________________
P.Bear R.N.: "lyme" Borreliosis/fatigue Tinnitus Neck- Facial-shoulder-lumbarpain. BellsPalsy1980. mono age 10 and 19, MCS/chronic Benicar q8 on 2/5 q6 on phase 2. Mino 25mg2/19 100mg3/23 now only MP meds, 11/30 D,1-25=48 D25=23 4/25 D,1-25=20 D25=7
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Aussie Barb
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Posted: Mon Sep 11th, 2006 17:05 |
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DNStog wrote: Excerpts from my Phase III post: Improvements.. Dec 31st, 2005
I just passed my one year anniversary on the MP and physically feel so much better this year than last. Mental outlook is much improved. Eyes are so much better...no more fear of going blind. Can look forward to helping daughter plan her wedding in two years.
Before MP, my energy and strength levels were so low.
-Walking had become very difficult because of stiff feet with granulomas in soles, sciatic-type nerve pain in left leg,
-Paraesthesia in feet and legs, and
-the beginnings of atrophy in feet.
Those symptoms are all gone now.
-Raynaud's Phenomena in my right arm hasn't bothered me for at least a month. -Brain fog no longer prevalent daily... comes and goes for brief periods.
-Ability to get words out better, but still have brief periods my tongue gets twisted or the words disappear.
-I just realized that dizziness and lightheadedness have not bothered me for a couple of weeks.
Still frequent, but short lived stuffy nose. Mild Tinnitus still here, carb cravings come and go, nails still brittle and dry.
-Light sensativity almost gone,
-ocular pain and pressure gone,
-eye dryness mild and infrequent.
-All granulomas, bruising and pain in underside of upper arms have been gone for over a year after ten years of twice annually cycles.
-Sarc lesions on legs much improved, most have gone, seldom have any itching. -Sleep patterns are fairly normal and I feel very rested during the day...first time in over ten years!
-Periodontal disease is gone after eight years.
-Neck range and flexibility much improved and
-aches are less prevalent after 20 plus years.
-No more morning hoarseness after thirty years.
-Digestive system in better shape, less bloating.
-No more catching or stabbing type pain in left side of chest (lung).
-Today I changed the bed linens in a few minutes and felt fine during and after. Last year, it would take me over an hour to change them, having to rest in between sheet applications, cramping legs, sweating profusely, and leaving me exhausted the rest of the day.
Yes, life will be much better in 2006 and my family and I are already planning a summer vacation. May be calling one or two of you MPers when we visit your country, just to wish you well.
Wishing all MPers gentle herxing and more healing in 2006!
Donna, still cruising ~~~~~~~on Phase III
Donna Updates
____________________
Donna: Sarc, skin, jts, pulm, neur/ RayPhen/ Uveitis/ Hypoth/ Sinus/ 65lb gain: trigly-108,D25-20,D1,25-D 40Aug04; D1,25 30 Aug05,Beni 40Q6h 12/27;MP2 4/27 abx chg 7/8; Prevacid Q48; Loritab; Synthr75mcg;Q 500 2Xd, MT&Prb as needed, Mag 250mg, MP3 11/19/05
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Aussie Barb
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Posted: Mon Sep 11th, 2006 17:12 |
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CelticLadee wrote: CF I have great hopes! It feels like I have turned a corner as I feel a greater sense of wellness these days. Jan 2nd, 2006
-I am able to sleep more easily at night more often,
-I have less enduring symptoms and
-for the most part my symptoms have decreased in their intensity.
-I have periods of time during the day I almost feel perfectly well and it really
-just tickles me beyond words to realize I am truly getting well.
-My activities continue to slowly expand as I am able to function longer hours without any repercussions or only slight ones.
I believe this is going to be a good year for me!
Happy New Year everybody! CL
ADD: January 21st 2006: I feel I have "turned a corner".
-My stamina and well being is still superior to what I have experienced since becoming ill & starting the MP.
-I am able to do a multitude of tasks in the house each day which I could not accomplish all in one day previously.
-The other big changes that impress me are I am sleeping much more soundly these days and also
-my daily anxiety level has decreased significantly.
December 2006:
Changing our audio & video equipment today caused me to get up and down off my knees a great deal. Stretching and moving things around. It is amazing how stiff and sore I am trying to do these things but also equally amazing how much energy I have to do them. Spent all day working on our project without much fatigue.
Walked the pom sistas up the easement road both ways and back. Did I ever mention that I can walk briskly both ways without any effort most days?
January 2007:
My skin is becoming softer and smoother for the first time in my life actually. I remember as a girl my mom complaining about the roughness on the back of my arms and no amount of lotions or scrubbing made any difference. Those granules were trapped under the skin as far back as I can remember but no longer there thanks to the MP. It is one of side benefits of the MP ... being somewhat like a beauty treatment. LOL.
____________________
Celticladee: 2001-CF/headaches.7/2002=Dx: Pericarditis. 9/2002=Dx:FM. 7/15/04=25D=27.9 1,25D=63.9. 01/13/05=25D=14 1,25D=43 8/03/04=Beni q6h 8/17/04=Full MP. 10/26/04=Quer prn 01/21/05=PH2
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Aussie Barb
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Posted: Mon Sep 11th, 2006 17:16 |
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Robertrr: Sarcoidosis: wrote this account re the Marshall Protocol for members of a sarcoidosis support group message board. Sept 05
"you wont believe this, but here goes"
I too, like Fred, am on the Marshall Protocol. It is working for me so far (some noticable improvements since I've been on it for about 3 months) and am optimistic that I will be able to get well. I know that will be another 1-2 years though as the protocol does take some time and it does require one to really focus on "getting well".
The most difficult thing to most people (me included) is protecting oneself from the sun and protecting one's eyes from sunlight and artificial light (light creates vitamin 1,25D which in excess causes our immune system to be unable to locate and kill the bacteria that is causing our problems. In many instances, people just can't do that easily (I could not have done this protocol several years ago, as I was too active in my children's lives. It has worked out well for me that I'm at a point in my life (my kids are in college and I'm no longer in "management" at work).
I am a S/W Engineer by trade. I've managed several fairly large projects (managed >170 engineers at one time) including projects for the early version of Space Station (not the one in use now).
I have not met Dr. Marshall, but I've known a few (very few) people like him in my work (rocket scientists, etc.). He is one of the very few folks around who can synthesize the important facts from the massive amounts of data out in the world and add his own creative insights and work...and then pull it all together into groundbreaking discoveries.
They say necessity is the mother of invention...and since Dr. Marshall had Sarcoidosis in some of the worst ways, it was in his interest (and ours) to work out the "cause". I believe that he has done so.
His work passes what I call "the sanity test". Other leading scientists have long suspected Sarc was caused by bacteria. Researchers and MDs gave up trying to find this exact cause when they thought they had a "good enough" solution (prednisone).
Since then some researchers have isolated types of bacteria from Sarc and other TH1 diseases like Lyme that are
1) very hard to detect (small, and similar to the leprosy bacteria, virtually impossible to cultivate in a petri dish),
2) cell wall deficient (CWD) that live within the immune system (within our bodies own defenses, such as white blood cells) and
3) are antibiotic resistant.
What you will find interesting is that Dr. Marshall and other key researchers have found that these "bugs" are very similar (and I couldn't spell the names for the critters....more data from MP.com) in all sorts of diseases (LYME being one of them along with RA, etc).
Many Lyme patients are trying the MP and from what I can tell online, they are having success like the Sarcies. Many Sarcies have been previously diagnosed with other diseases such as Lyme before they got their Sarc diagnosis. All these diseases have symptoms that are so similar (result of imflammation in various systems in the body) that it is very hard for MDs to make the correct diagnosis.
Anyway, there are many folks using the MP to get well. Many chart their progress on one of those Boards. For many of us, the MP is really the only option out there in a world where Conventional Medical Wisdom says that is "ok" to not figure out the cause of diseases like Sarc. given the world view that Sarc "rarely" kills people and may even go away on its own. As many of the folks on this board can attest, Sarc isn't that way, it doesn't go away and is very systemic (can attack many/all types of systems in the body).
The material on the MP board is comprehensive (meaning to the layperson like me, it is not necessarily easy to navigate, as you've found). It takes time but I believe it is worthwhile spending the time to do so, even if you decide this treatment isn't for you.
As a way of getting a bit familiar with whether this might make sense for you, here is a link from an article published by a CFS patient who is currently on the MP. She did a great job explaining what it takes to "go on" the MP:
If you are still interested after reading that, I'd suggest trying to read the technical papers on the marshallprotocol.com AND sending off for the DVDs 'Recovering from Chronic Disease' of the Autoimmune Conference in Chicago last year.
There were several leading researchers along with Dr. Marshall and other MP.com Board Moderators, other MDs, patients, etc. at the Conference (very full attendance). There were 3 days of discussions focused on Sarcoidosis and other TH1 diseases (of which Sarc is one), the biology/causes and a great deal on the MP (how it works, why it works, what patients are going through on the MP). It was good to hear MP patients there and see a few MDs not only advocating the MP but explaining how their patients were reacting.
Feel free to email me if you'd like and I'd be more than happy to help you.
Please know that you're not alone with this disease.
There are people on this Board who've suffered for many years. They are all great people and can help identify how they've made it through some very trying times (as well as provide some comradarie). I've come to know them all pretty well by their posting, although I have to admit I've been a poor "poster" and tend to lurk more than post.
see also:
Robertrr Sarcoidosis the good news for me.
Robert R's progress
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Robert: Biopsy Sarcoidosis Feb, 2003. lymph (lung, throat, abdomen); Oral, bone marrow: NOIRs and avoid light; 7/1/2005; Benicar Q6H 7/12/05; Minocycline 7/26; Currently 100 mg q48hr; D 1,25=44; D25=28 as of 7/12/2005; 1,25=25; D25=26 as of 10/06; Phase 2 Sept 20th 05
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Aussie Barb
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Posted: Mon Sep 11th, 2006 17:19 |
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jrfoutin wrote: re Motivation and Energy returns. Jan 5th, 2006
I am not Lyme dx, but I have had a tick bite that never had any treatment and may have had a part in my illness. I don't know.
But this morning I helped my little grandchildren and daughter move with heavy packing and lifting, then came in the house and moved furniture, vacuumed and picked up many things on the floor (a bend and stand task I have barely been able to start doing recently), got down on my knees (points of pain and weakness earlier in MP) and cleaned under couches and got back up easy enough without anyone having to help me stand, took out the trash, loaded and unloaded dishwasher and was just taking a break with the MP before starting a hefty day of mental pushups with Webmaster tasks and finishing year end reports.
As I was vacuuming, I recalled this Spring when all I could do or cared to do was sit and stare mostly, as my black hole universe had turned into a slow motion struggle to do anything other than that. How amazing it was to have the energy to do these things this morning, and to be motivated to do them (I cared that there were errant fragments all about of scruffy stuff from moving).
Motivation and energy will return in time. For some sooner than others, but it will return. Until then, I feel for your circumstance. It was mine not so long ago.
____________________
JRF: Dec99:Sarc lung, Sep00:Weaned Pred, Mar05:No D/light; NoIRs, 8/09:125D=61|25D=12;Beni40Q8H, 8/18/Beni40Q6H, 8/23/M25, 8/31/M50, 9/14/M75, 9/15/Beni40Q8H, 9/26/M100, 10/6/ModPII, 12/31PII
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Aussie Barb
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Posted: Mon Sep 11th, 2006 17:21 |
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pdejager wrote: MCS CFS improvements so far: Jan 11th, 2006
Flexibility: has improved significantly. It used to be a Herculean effort for me to cut my toenails, I found it difficult to wash my feet in the shower, I would curse under my breath if I dropped something because it would be such an effort to pick it up. These things are no longer so.
Muscle strength: a year ago I would get up out of a chair by using my arms and legs together: I could not do so using just my legs. Now I just stand up, even from a squatting position.
Cramps in legs: Even a few months ago, if I tightly contracted the muscles in my feet and calf the muscles would spasm and give me very painful cramps. Now they hurt, but no cramps (I speculate that my intake of Magnesium may have contributed, but I'm not inclined to experiment).
These may seem trivial if you are so seriously ill that you are bed-bound, but I see them as proof that the MP is working and as a promise of better things to come.
Thank you, Dr Marshall and your team for your untiring work and your gracious and patient guidance.
____________________
Peter: MCS/CFS (1990)1,25-D/25-D 01Jul05: 38/28. 25-D 27Oct05: 16. Benicar started 27Aug05. Mino started 12Sep05. Started Phase 2 01Nov05. Started Phase 3 25Jul06.
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Aussie Barb
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Posted: Mon Sep 11th, 2006 17:24 |
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JudyBeauty wrote: CFS Phase 3 Life is good. I love the Marshall Protocol.
Jan 12th, 2006
Everything is going well. progressing in phase 2. I welcome the herx because it makes me feel like I'm healing.
-In fact I noticed that the heart shakey herx symptom has not surfaced for awhile.
-I'm very happy with my progress and I feel like I'm improving all the time.
-Walked around in Walgreens for about 20 minutes and then the fruit market for about 20 minutes and did just fine.
-Took a nap then mopped kitchen floor, vaccumed, washed dishes, changed cat boxes, and did some laundry.
-My hair hardly falls out at all now. I have long hair and I only wash it once a week. It gets very tangled but hardly any hair comes out when I wash and brush it out.
-Mood is great. Life is good. I love the Marshall Protocol.
Take care all.
Judy
Feb 15th, 2006: Phase 2 Things are going well.
-Noticed the lymph nodes on the inside of my jaw on each side are much smaller. This is the first time in 30 years they have been this small.
-Mood is good and I am content to stay home and relax, nap and watch lots of TV.
-I can still take care of my family but I do things a little at a time and then rest in between.
I'm so glad I'm a part of this wonderful group of people. Hang in there everybody.
23rd Oct, 2006: Phase 3
Everything is going well. My sore left elbow is improving. I don't notice it at all anymore. I don't have any pain there.
I have not had skipping or extra heartbeats for months now.
Tried a few situps and leg raises and some light weights. I'm amazed at how it seemed effortless. I got the muscle I just don't have the stamina. Not planning an exercise regime yet I just wanted to see how my muscles would react.
November, 2006:
Elbow pain has gone. I haven't had any sensation of pain for at least a month now. Resolution of symptoms are creeping up on me.
I'm very happy with my progress.
I do see a slight improvement in my stamina for the better but I have a way to go.
December 2006:
I've been having more energy lately. My mood is good.
So happy I'm on the Marshall Protocol. I've been watching the LAX conference DVD's. There is such a positive vibe with our group. It's great.
January 2007:
Things are going well. Overall more energy to do tasks around the house.
Mental attitude is good and feeling of calmness and contentment prevail. I've been able to read some books and concentrate on the storyline throughout the whole book so that's progress. My memory seems to be improving.
June 2007:
I'm really getting encouraged because my energy levels are getting better even with the increases of abx. Fatigue has always been the problem with me before the MP and when I started the MP I really got zonked. My stomach is doing better with bread but I am watching for any signs of discomfort. I'm still getting the mild herx but with less fatigue.
I've been going out at dusk to weed my garden (15 to 20 minutes tops). I don't want to push it.
Still have a way to go but it sure does feel good not to be so dragged out.
Tinnitus is much lower and mood is good. Right elbow not as sore. Just little twinges here and there of joint pain. Sleeping well and I actually slept through the phone ringing.
Judy
May 2008:
Off antibiotics: -I have more energy without the abx and less IP.
-Noting the disappearance of a skin lesion on my nose that has been there for the last ten years. I asked the dermatologist about it a long time ago and she said it was an enlarged pore and the cause was unknown. It was raised and red and I was starting to get more of them. I kept looking at the one on my nose and wondering if the MP would resolve it. Then a week ago it scabbed over and fell off and there was beautiful smooth skin underneath. Yeah! I hope it doesn't come back.
-The lymph nodes under the left side of my jaw are really shrinking up. I only have two enlarged ones on the right side of my jaw now.
-Sleep: Good, Mood: Good
September 2008:
-Heart rate normal when going about my house cleaning and that is wonderful.
-Overall better energy. Staying in the house.
-Tooth sensitivity is improving.
-Mood is very good.
-Seasonal allergies to ragweed is very slight.
-I know I will have to change my prescription glasses because I'm less myopic now.
October 08:
Extra Light Exposure: Twice this month for a few hours to take a ride with my husband to look at the changing leaves and Lake Michigan. It was nice to get out.
-A normal heart rate when active is a welcome developement and lets me get more things done around the house.
-My addiction to chocolate has disappeared and I'm able to resist the bags of candy in the house (my husband is eating it all). I have been a candy junkie all my life.
January 09:
OK I'm starting to feel better now and energy is increasing. I went to the dentist and had my permanent cap put on and a tooth filled and did the best I have in years as far as anxiety is concerned. I felt very calm. So that is a major improvement. A couple of days ago I went to a party and was amazed at how calm I felt and I didn't even take a Vallium and energy level was pretty good. The only thing I noticed is my heart rate was a little high the next day.
I can tell my body feels more sluggish when I increase the abx so I drag around for a few days and my knee feels a little stiff.
Things are going great.
Judy
____________________
Judy: CFS viral onset 1986 1-25D-53,25D-12 1/5 Noir's/D avoid July04/ Beni 3/22/05 40mg q6h 3/28 Beni 20mg q3h/ Keto2% Stop Benicar 4/23/05 Restart Beni 8/13/05 40mgq6hr Mino 25mg 8/22/05 Phase 2 10/15/05 Phase 3 6/11/06
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