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Aussie Barb
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Posted: Thu Jul 12th, 2007 19:40 |
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Zars: CFS RSD/CRPS IBS: Crikey! What a massive change since May/June when things weren't going well -
Day 92 MP
In May/June, functioning was Moderate to severe symptoms at rest; severe symptoms with any exercise; overall activity level reduced to 30% - 50% of expected; unable to leave house except rarely; confined to bed most of day; unable to concentrate for more than 1 hour a day.
My elderly mother was over from NZ (to look after me after hand and wrist surgery, and she went home very worried about me, having seen me this dysfunctional. She stocked my freezer with chicken and vegetable soup before she left, which was the only thing I was craving!
Now: sleeping well, significant improvements in energy, cognitive functioning, reductions in lethargy, general malaise, low grade fevers, muscle and joint pain. (Still ready for bed about 1900 hours). Haven't had shaky, wobbly, weak legs since 01/07/2007, and only a couple of episodes of quadricep/knee pain (myalgia+arthralgia). Only taking occasional paracetamol for that, and for lowgrade fevers.
BUT NO "AFTERNOON HORRORS", since 21/Feb/2007 when I had an URTI Pre MP.
Afternoon horrors - my terminology - (anytime from 10:30 onwards actually):
this being when I had to (- it's not a choice, and trying to "get/push through it" does not work ) - crawl off to bed, with my body and head feeling as though they were being squashed, - (Timothy Kenny is his book talks about having a "helmet head" and that's exactly what it felt like - ) fever, muscle and joint pain, and zilch concentration and cognitive function.
Functioning now increased significantly. In fact, I feel so well, I am actually thinking (even thinking shows an improvement) about exercising. Being held back (which is probably a good thing, as the goal being to kill off bacteria and get well; and exercising always make me feel WORSE) by achilles tendonitis both legs.
I feel as though I am back up to where I was, functional-wise, in 2004 where I was not just surviving, but doing (albeit at a reduced level).
See, all positive! 
___________________
Zars: CFS 1996+; RSD/CRPS 2003; IBS dx 1997,leaky gut syndrome dx 2004, dysfunctional liver detox- dx 2004, mercury toxicity dx/tx 2004; Dec06 25-D 22.4, Jan07 1,25-D 33; NoiRs depending on contrast sensitivity; Benicar 40mg q6h, mino 100mg qod
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Aussie Barb
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Posted: Sat Jul 14th, 2007 00:55 |
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Nikki: Sarcoidosis: normal menses
Member in Phase 2
Today, I started my period. I am in my late 40's. This is of consequence because this is the third period I've had in a row and I haven't had a period in several years. What's even more dramatic is that I've never had more than occasional periods without being on Clomid or on the pill - ever! I'm on HRT but have been for many years with no periods or even spotting. Obviously, one part of my system is reacting positively due to the MP. Now I know why I've been feeling worse over the last week.
I'm very pleased and my husband is very encouraged. Thank you!!!
Nikki
for those reading: see FAQ Pregnancy and the Marshall Protocol
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Nikki: Dx:Sarcoidosis; Phase I April 04; Phase II June 04
1,25D=58, 25D=15 (Mar04); 1,25D=33; 25D=4.8 (Jul04 & Dec05); ACE=76(Dec05) Mino 25mg q6h; Olmesartan 40mg q6h
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Aussie Barb
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Posted: Sat Jul 14th, 2007 21:53 |
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joanbpass: Scleroderma: Assessing my improvements:
Member in Phase 2
There is no more leg edema (the right leg has more going on). My knees are no longer swollen. I can kneel on them to maneuver in and out of the tubby. My feet can bend and turn at the ankles. I can bend my legs to get dressed, not lay my clothes down and step into them. And I can cross my legs. And the sciatica is not there, also the torturous restless legs have gone.
Shoulders have better ROM. I can push my arms into the sleeves and raise my arms to get in and out of clothes. When I get up in the morning I don't hang over in pain and half cry that this is the way the rest of my life is going to be.
My friends and family say my voice is stronger and I seem like I'm doing better. And I have to say it again.....I am so thankful to not have to be on Prednisone and Methatrexate.
Sept 07:
Yesterday I finally went out and had my hair done. (I was looking like a bad Katherine Hepburn). It was so good to get out and afterwards walk through Tuesday Morning. A little more time would have been nice, but Dad was in a hurry......sound familiar?
I'm at the seven month mark on MP. Early on, my husband said to me, "I think you're sicker than you think you are".....I said, "I'm not going to die this way"....Since Day One I never felt as though I was sick, I felt as though I was getting better......Thank you so much Dr. Marshall.
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Joan: Scleroderma: 2/17/07: Benicar 40mg q6h, Mino 100mg q48h. Rayn, SB Dil, Dysphas, Jt. Pain, RLS, Dupuytrens. (D-25 17ng/mL 4/10/07) (1,25D 40pg/mL 2/12/07). Prilosec, dietary fiber. No suppl. NoIRs, No "D", No light.
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Aussie Barb
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Posted: Sat Jul 14th, 2007 23:40 |
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Updates to
D1: CFS: improvements to health and Life.
D2 CFS: enjoys improved health and Life.
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Aussie Barb
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Posted: Sat Jul 21st, 2007 20:08 |
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Updates to
Carol's progress: RA: A wonderful combination of more activity, less pain and more effortless ramping of Phase 3 antibiotics. I AM THRILLED.
Christina: RA - independent observer reports "It was unmistakable that she was much improved."
Chris Sarcoidosis: PSA normal.
SydneyChris: CFS: PSA normal
Jimmy_jimjim: CFS: Day 90 - MP three months now and I feel great!
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Aussie Barb
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Posted: Thu Jul 26th, 2007 23:28 |
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tadpole: the alopecia and brain fog are getting better. have regained a considerable amount of strength.
Member in Phase 3
i've not posted in along time so i thought i should mention that i've stayed with the program and have continued to improve. progress is slow but definite. the alopecia and brain fog are getting better. i've regained a considerable amount of strength. i now get up at 7am and retire around 9pm where previously it was almost impossible it rise before 10am or be awake past 8pm. i thank the God for the MP and the people that made it available.
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tadpole: Borreliosis EM jan03 Brainfog Alopecia Tinnitus Arthritis Profound Fatigue| MP Jan06 Beni40mg q6hr| avoid sun & D NoIRS| 1,25D=48,25-D=16| Ph 3
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Aussie Barb
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Posted: Thu Jul 26th, 2007 23:32 |
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Adrianne: CFS: Since it has been six months since I started the MP, I would like to take this opportunity to summarize some of my MP successes.
Member in Phase 2
-One of the best things that has happened is that since starting the MP I have not had a single migraine, nor any other kind of headache! This improvement took place as soon as I started the Benicar. I am probably still remaining headache-free because of the Benicar but I know that eventually, with the inflammation gone, I will still be headache-free. This is so major for me because severe headaches crippled my life for over thirty years.
-The tight and painful muscles at the bottom of my skull, in my neck and shoulders have loosened up and they are not nearly as painful as before. I think that my ongoing chiropractic treatment has helped this somewhat but I know for sure that the MP is actually resolving it.
-I have noticed that I am not losing as much hair as pre-MP. It no longer looks as if it is thinning. Yey!
-I have greatly improved digestion. I no longer need to take supplementary digestive enzymes. The gas and bloating that I used to experience so frequently is just about gone. I can even tolerate foods that I couldn't handle before, such as milk (non-Vit D, of course), cheese and CHOCOLATE! (Bless you, Dr. Marshall)
-Now this is certainly an interesting outcome, but the brown flecks on my irises are completely gone. Now my irises are clearer and a nicer green color.
-DH still reports that for the most part I am no longer snoring and he hasn't noticed any more sleep apnea. This is amazing but he maintains that it is absolutely true.
-I used to be extremely sensitive to dust and pollen. Contact with either one would usually result in a major headache. Well, I cleaned off a pollen-laden porch a couple of months ago and some got in my nose because I could feel the tickle, but I suffered no consequences. Also, trimming pollen-laden bushes (at dusk) caused no problem for me. Similarly, dusting around the house, especially the ceiling fans, no longer affects me adversely.
-I've been hypoglycemic for years and have had to eat at regular intervals to avoid feeling weak and spacey. Doesn't seem to be much of a problem anymore!
-That pesky little, but ongoing, post-nasal drip is just about gone. For many years I could not sleep on my back because of the accumulation in the throat. Now it is an option.
I know that many more things are resolving due to all the herxing I am experiencing. I am confident that I will have many more successes to report as I continue on this journey And A special thank you to all of the hard-working moderators, dear MP friends and of course, Dr. Marshall, without whom none of this would have been possible!
Adrianne
April 2008:
-those very itchy, scabby patches are completely gone.
-Kidney pain has all but disappeared for now, anyway.
-Also, I seem to have more energy/endurance.
____________________
Adrianne: CFS ... Avoiding D 1/20/07, 3/6/07 25D=9.1, NoIRs/Benicar comm 1/31/07 q6h; Mod Ph 2 4/5/07
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Aussie Barb
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Posted: Thu Jul 26th, 2007 23:40 |
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Cold Feet: Lyme - MP has me back to a new state of health that has me ready to go back to work again – which is a miracle, given how comatose I was nine months ago!
My lucidity is back and my energy is finally picking up and is fairly constant. My herxing is primarily neuromuscular (rather than fatigue herxing which was terrible, demotivating and robbed me of productivity). As well, my teeth look whiter -- even my hair is “happy!” It's all very amazing...and sometimes a scary validation if you know what I mean...
June 2008:
I took a seven week break from antibiotics and started back on the minocycline last week (full dose). The break allowed me to travel, conduct business, swim in the ocean….it was like I was never sick. It was liberating in many ways!
I continue to make amazing progress. Thanks for your support!
_____________________
Cold Feet: Lyme & Mycoplasma Pneumonia 2004 -Age 44| 6 Wks Doxy & 25 mG Atenolol STOPPED| 1,25D–42 25D-37| Phase 1 Oct. 06| Avoiding all D & Sun | NOIRs Everywhere | March 2007: 1,25D–30 | 25D-11| Member Phase 3
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Aussie Barb
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Posted: Fri Jul 27th, 2007 23:37 |
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bethk6: Began Beni 6/18/07: early improvements
Last fall I'd had a huge chalazion under my left eye that would never come to a head & had to be lanced around Christmas. Despite that, it continued to itch & get red & remain "active" no matter what remedies - natural or medicinal - I put on it. Right after starting the Beni, two little "pimples" popped out at either end of the incision, drained, & completely disappeared so that there's no more "activity" under that eye at all.
The other change is that during the 2 weeks I was on Beni only, the itchy red dots that have been on the bottoms of my feet forever (chronic fungal-type infections) disappeared.
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Beth: Began Beni 6/18/07 Q6H. Mino 25 mg. 7/02/07 FM, IBD, Osteoporosis, sens. to most foods & suppl. 40+ yrs; Mg, C, Benadryl, Ibuprof. 1,25-D=55, 25-D=28 04/25/07; Avoid. light & D; NoIRs.
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Aussie Barb
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Posted: Sat Jul 28th, 2007 17:25 |
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Updates to
Grace: CFS: improvement in energy. happy.
JRFoutin Milestone Markers Sarc-Th1, Notes from Phase III
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Aussie Barb
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Posted: Tue Jul 31st, 2007 21:25 |
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Alayne writing for Jacks: Neuro-tickborne disease: mental/cognitive improvement
Jacks has neurological tick-borne disease, amongst whatever else he's picked up along the way. His neurological/brain/emotion/processing/etc. symptoms have been the worst aspects of his illness. He has/had a huge amount of brain involvement.
It took about a year until some mental/cognitive improvement was really detected. And it's taken until recently (1.5 years on the MP), to see some truly major changes. He's killed more than plenty along the line and it's really lovely to finally start reaping the benefits! it all takes time.
Recent neuro/brain benefits include: greater mental agility and cognitive ability, mood stability, increased patience and understanding, increased memory, and so on. Of course, this has helped him both socially and privately. I'm increasingly optimistic!
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Jacks: 12/05:25D=31,1-25D=59, 6/06:25D=<7 Neuro-tickborne disease. Probs w/ concentration, short-term memory, mood swings, insomnia, etc. Back won't heal. Extreme energy & weight loss. Avoid Sun/D 12/05, Ph1 1/06, MPh2 7/06, Beni 20mg crushed q2-4h.
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Aussie Barb
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Posted: Tue Jul 31st, 2007 21:32 |
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healingjason: Autism:
There have been unsolicited positive comments made about Jason's play and his interacting with others to give me hope that something is happening.
Also, after 4 months on the MP, Jason's sleep is definitely much improved. It used to be terrible with him waking many times a night crying and distressed which was very wearing. He is a lot more settled and relaxed at night these nights.
April 21st, 2008:
While one swallow does not make a summer, I should report a very positive development that we hope is not just a one-off.
For the first time, we were able to see Jason play football with his older (13 year old) brother. They kicked a soccer ball to each other and exchanged catches of the ball for a good period of time. Jason was taking great pleasure in this, as was his brother, and this is an absolute first. We have been able to train him to exchange catches but he has only done this fleetingly and in a very wooden fashion, that is, without getting any intrinsic pleasure from the activity.
As I have reported, what we are seeing is a very happy little boy – very cheeky, impish and more certain of himself. No great cognitive improvements yet but very much improved in terms of sociability and emotional maturity. His eyes seem to be now opening to the joys of relating to people.
We have just started phase 2 and Jason has been on the MP for 12 months.
There has been no obvious herxing to observe so it does not seem like he is killing bacteria in the usual way but we are very happy with his emotional state and social interactions. I gather that many adult MPers come out of a gloom and depression while they are recovering. I don’t know if this occurs alongside herxing or whether this follows herxing. Can anybody advise or comment on this?
What I am getting at is that Jason could be an atypical case – he could be slowly improving (given his growing positive state of mind) – but this seems to be occurring without the discomfort which seems to signify a herxing/killing bacteria reaction in most MPers. Do MPers recover without these more obvious signs of herxing? Can killing be going on under the radar so to speak?
Without obvious cognitive improvement, notably, the development of speech, we are still speculating as to whether Jason is improving on the MP but it is nice to be able to enjoy him so much more these days regardless of whether he makes further gains or not.
John
Jason's Alumni Updates
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John: Father of Jason: 10 year old autistic boy. Chronic infection evident from urinary amino acids (see bioscreenmedical.com). Benicar 7 Apr 07| June 07 Modified phase 2| Phase 2 from 9 March 08
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Aussie Barb
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Posted: Tue Jul 31st, 2007 22:20 |
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Update to
Juliette: Raynaud's: really thrilled with my improvements so far
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Aussie Barb
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Posted: Fri Aug 3rd, 2007 05:27 |
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Moxie: CFS FM: I am really enjoying the compliments of how well I am looking..
Member in Phase 3
I have been 2.5 years on MP and in the past month I have really felt the benefits. I still have a long way to go and some extra health issues to deal with but if this was the level of health I ever achieved and still had to take some drugs for the rest of my life - I WOULD BE HAPPY!! But I know I will keep on feeling better over more time.
It is 25 years in October since I became ill and despite thousands of dollars of treatment, I have NEVER experienced the stamina and endurance and fast recovery that I have now.
Light is still a BIGGIE for me living in sunny Queensland and I am getting ready to shake the shawls out and sort through the long sleeved tops and have purchased new NOIR's ready for the HOT season. I have only just managed to go to the movies (with light NOIR's) and not have tears streaming down my face the whole time from the light.
I am really enjoying the compliments of how well I am looking and also my doctor peering into my face and saying "you look well?" He is really noticing the difference now.
Cheers Moxie
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Moxie: CFS 24 years - FMS. Benicar 4 daily - Ph 2 16/5/05 - Ph 3 10/5/06 Metformin 500mg 1/2 bd. Vit D 60nmol/L (26) 1,25 D 92nmol/L (38.3)
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Aussie Barb
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Posted: Fri Aug 3rd, 2007 05:32 |
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Le: the progress I have made since starting the MP. Life is good and getting better!
Member in Phase 3
I wrote to a friend who is considering the Marshall Protocol for himself. It clearly defines the progress I have made since starting the MP.
"I wanted to tell you about something that happened Tuesday night. When I came home from Salt Lake, I stopped to buy some groceries. In the canned vegetable isle I squatted down to read the ingrediants on some cans of tomato sauce on the bottom shelve, then I stood back up. I did that a couple of times while reading labels on cans, then I stood there for a moment, because I suddenly realized what I had done. I got teary eyed. I was happy and amazed and filled with gratitude that I was able to do the simple act of squatting down and standing up again, unaided. I couldn't do that a few months ago.
Little by little, the Marshall Protocol is giving me back pieces of my life and simple movements that were once impossible are returning. Yes, I have my bad days and I have to deal with immunopathology (Herxing) and some days my knees, spine or other joints are flared up and I can't do the simple movements and tasks of daily living, but I have the precious days that tell me I am getting well and that my life will return to a more normal and healthy state, perhaps better than ever before."
The symptoms of the immunopathology (Herx Reactions) are worth the progress that is made. Life is good and getting better!
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Le: MP: 11/28/06 |DX: SLE 1989, fatigue, joints, skin, sun/heat, lymph|DX:Asthma, Hypothyroid,| DX: Zinc poison-05|DX:MS-06|Meds: Thyroid 2.5g D| D Tests-10/12/06=1,25-D=36, 25-D=12 | NoIRs, avoid light & D | Phase1:11-28-06 | Phase2: 2-23-07|Phase3: 8-2-07
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Aussie Barb
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Posted: Sat Aug 4th, 2007 18:56 |
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Updates:
DNStog Donna: Sarcoidosis: improvement to back pain
Melinda: Lyme: improvement to back pain
Jasmine: Neuro-sarc: List of more improvements
Carol: RA: The good days keep on coming. I can’t remember when I’ve had such a low level of joint pain.
Donna still cruising in phase 3 I've noticed so many improvements lately
Sue Lyons: Sarcoidosis: I was able to walk those very steep hills in Seattle without supplemental O2
Natalia: CFS: end of Phase One - summary
Carol's progress: RA: this change in circumstances to feeling so much better and able to do things has presented some interesting challenges.
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Aussie Barb
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Posted: Sat Aug 11th, 2007 03:28 |
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patrickburke: What recovery feels like.
Member in Phase 3
The main problem that I have at the moment is coming to terms with getting so much better so suddenly. I know that sounds daft but it's true  . E.G. last night I went out jogging, yes, proper jogging with no pain in my joints or SOB with my little Welsh Sheepdog skipping around me  . I now feel great most of the time. I had the old "spring" in my step. I was walk/jogging 50/50 and surprised myself. It felt great .
Carol, like you I am amazed and maybe even shocked at how ill I have been and for so long and that includes all the heavy IP from the MP. And I knew all along that I was ill with a slow growing infection, even when the docs kept telling me I was fine. But I don't think I ever really thought that I would be able to feel as good as I thought I should. Now I feel that eventually I will be able to reach that ideal. There is still more work to be done. I have felt anger etc too and am still in the process of sorting everything out in my mind so I will post more later.
I am still catching up on all my domestic jobs, setting my house in order if you like. I see things now that look wrong that looked perfectly fine whilst I was ill  . My whole outlook on the world has changed.
My brains word processing power is increasing rapidly, I no longer get the old "wrong letter" dyslexia type syndrome and my spelling is improving as is my speech, speed of thought and recollection.
One thing I know is that the MP works in months not days so I will have to wait longer to see where this takes me.
I have been jogging again tonight, my lungs and heart are fine, it's my legs that are weak, I will train them up.
Oh, I almost forgot, my light sensitivity was tested today. It was very sunny and I cleaned and washed my car, tidied my yard etc etc. I was covered with hat but still no need for Noirs. I have felt no major repercussions so far just a little weakness.
October 07:
Just for the record. I still cover up, I am still wary of daylight even though I can handle as much as I reasonably need to. I still wear a hat. My office is still boarded up and lit by tungsten even though fluorescents don't bother me any more. My PC monitors are still set to lowish light even though I don't feel the need. But I have not had to wear my Noirs once since the 23rd June 2007 . What a great day that was .
Within the last few days I have noticed that I can recall some telephone numbers again, I lost this ability many years ago when the brain fog started setting in.
June 2008:
The MP cleared my Sarc xrays within a few months. Xrays aren't imaginary. I had a check up xray last week and a chest examination. I was told that my lungs sounded "absolutely fantastic" ! When I asked the radiologist if there was any adenopathy or shadowing on my lungs He gave me very puzzled look and said "urr no there's nothing like that, but not everything shows up on xray you know" I told Him that I had had Sarc and then He did a higher resolution xray which still showed nothing.........yep it's still gone !
I have gone from hardly being able to hold a conversation for lack of breath to going running with a 16 month old Welsh Sheepdog. And being 1/2" taller that I have ever been in my life as my spine is straightening up and my whole body is rebuilding itself stronger!
Herx now is just a slight inconvenience, a cracking neck or a rumbling tummy for example just little gripes that anyone could have. It is fading away and I have no reason not to believe that it will totally fade away....one day, when I am fully healed .
Tests: Cholesterol, sugar, thyroid, CBC and liver (elevated prior to MP) all perfect chest X-rays "no adenopathy, scarring or adhesions, normal" ahh, I love the MP LOLOL
Take care all.
_____________________
Pat: Pulmonary Sarcoidosis dx 5/04; No D tests; Avoiding D/light+noirs since 6/04; Noirs ended 6/07; Benicar 40mg q6h; Mino q48h; abx2+3.
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Aussie Barb
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Posted: Sat Aug 11th, 2007 14:56 |
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Deb Grabetz: Sarcoidosis: I'm truly amazed at a couple of things. allergies, and my jaw.
I'm truly amazed at a couple of things. After taking Benicar since April, I've noticed a couple of things...
One was my allergies...My head would swim when I got around anything chemical, Windex, hair spray, etc... this is completely gone. I was kind of a freak when anyone would spray anything around me because it would put me into instant "brain fog" and cause extreme irritability. In my opinion it was the "smells" of the chemicals that would set this off.
Happened too when I would clothes shop-- exposure to too much new clothing. It seemed as if my head would leave my body and here I am not experiencing this at all.
Secondly, my jaw seems to naturally close now, where before I would need to consciously close my jaw for my teeth to meet... Interesting stuff!
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Deb: Dx 07Sarc Lymph; D 1,25- 42/ D 25- 11. Sym since 1st flare(neuro)in'91--went unDx -Dizz- cognitive, photosen-loss of bal-leg tremor brainfog extreme fatigue. 4/07 Beni 40mg q6h
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Aussie Barb
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Posted: Sat Aug 11th, 2007 15:09 |
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Grazyna in phase 1 Summary of improvements
Matt (15 yr) in phase 3 Rickettsia + Lyme symptoms: Life has picked up a few notches.. school, holidays, hanging out etc..
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Aussie Barb
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Posted: Thu Aug 16th, 2007 13:37 |
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afetzer: Lyme: improvements
1. One day last week I was in the basement and needed something on the second level of the house. I walked up the 14 steps to the first level and then the 14 steps to the second level and realized that there were no heart palpitations and I wasn't huffing and puffing. I also wasn't feeling dizzy and/or fatigued. I walked back down both sets of stairs to the basement and had only slight dizziness and tightness of the chest. 
2. By blood test results show good kidney function. My ALT which had been 51 dropped to 44, only 4 pts. over normal. My BUN/Creatine ratio was 23, only 1 pt above normal.
3. My blood sugar was 103. This is down from 132 the last time I had blood work approx 6-7 weeks ago.
4. My thyroid level has stabilized with 0.075 Levoxyl. This is down from 0.125 which is what I was taking when I started the MP.
5. I'm continuing to be able to do my daily stretching.
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Audrey: Lyme CFS 10+yrs| levoxy0.100mg Xyrem | 05/05 25D=54 01/07 1,25D=32 25D=35 05/03 25D=24| 03/22 Beni40mgq5h| 11/06 NoIR's avoid D & sun| Mino 04/04| Mod Ph 2
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