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Aussie Barb
Member in Phase 3
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19553 |
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Posted: Fri Jun 12th, 2009 11:42 |
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Thank You to All ..
Guess what I did today!
I went to the beach today. I was going to walk along the Boardwalk... but when I got there I could not resist slipping off my shoes and stepping my feet into the sand and the cold refreshing water coming in in little frilly necklaces of foam. It was so delicious I couldnt tear myself away. It was so good I even felt guilty for having such pleasure. I would go back to the walker and sit to rest, and then back to the water, till it was time to leave. 
and then we went to the pool.
I have been working further with my healing and symptom management techniques. stability on my feet is improving. R hip is painful to walk distance. The good news is that every day I am making "a first" in doing something more.
One step at a time. 
All best wishes, Barb ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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Dr Trevor Marshall
Foundation Staff
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Posted: Fri Jun 12th, 2009 12:43 |
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BARNEY
Moderator
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Posted: Fri Jun 12th, 2009 13:05 |
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OH BARB,
I cried while I read your post to my DH....what a true blessing you are!!!
I love you for all you have done to help me even tho you were so sick you could hardly get up.
HANG IN THERE, WE WILL MAKE IT!!!BARNEY
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64jointsarc77skinsarc80lungsarc81asthma/migranes
95rkidneyremoved(cyst)diabetic/gallbremoved,96
totalhyst(cysts,endom)01fibro,Benicar40/20mg&xtra
as needed,stage5,
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Frans
Member in Phase 2
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Posted: Fri Jun 12th, 2009 14:21 |
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Oh Barb !
You so deserve signs of recovery !
Your post absolutely makes my day !
Love, Frans and Ellen
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Burn-out/nervous breakdown Jan01 125D 48 25D8.48 Ph1Nov06 ModPh2Jan07 Ph2Apr08 Cipramil Seroquel NoIRs lite exp r/t work cover up 25D3.9(Oct07)
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Toni D
Moderator
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Posted: Fri Jun 12th, 2009 14:33 |
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| Praise God for His faithfulness! Wow ...such blessings in the seemingly small things. Your post made me smile, Barb. You're not quite where you want to be but you're definitely not where you were before. Love 'ya
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DX sarcoid-1970 glaucoma high BP asthma allergies| Meds-Lasix Xopenex Nevanac Cardizem Nizoral Cream| NoIRs No D/sun | 08/05 25D=26, 1,25D=38| 07/07 25D=<4| BeniQ6H 09/27/05| ModPh2 07/06; Ph2 09/07|Ph3 04/08| 12/08 25D=<4| 05/09 25D=<4, 1,25D=27
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Pipistrelle
Member in Phase 2
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Posted: Fri Jun 12th, 2009 15:39 |
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Wow! wow! wow! That is brilliant, I'm so thrilled for you. Your description of being at the beach was so good, I almost felt the sand between my toes - and I live inland!
Wonderful progress, and so well deserved.
Morag  xxx
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Sarc lungs, uveitis '90 dx '92, pred 18 mo '93-'94; D25 31 Nov 06, D1,25 35 Nov 06, NoIRs Feb '07, D restrict Nov 06, low lux home, cover up, light exp commute 90 mins/day Mon, Tues, Wed
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JanEE
Member in Phase 3
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Posted: Fri Jun 12th, 2009 17:20 |
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Barb, that is such wonderful news. I love the beach and know the feeling you describe. All our "firsts" while getting better on the protocol are such wondrous events, but yours are extra special. You've fought so hard to get where you are, you truly deserve the blessings. I'm so happy for you.
Hugs,
Jan
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CFS, FM hypothyroid 125D69 Ph1 5/05 Armour thyroid B12 for low blood levels NoIRs limited outings covered Ph2 9/06 Ph3 8/07 25D-5-4/09
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Deedee
Member in Phase 2
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Posted: Fri Jun 12th, 2009 22:22 |
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I am so happy you are gaining your life back and you can enjoy such sweet moments.
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Sarc in lymph nodes. D14. Back to Phase I, 100 mino Benicar 4X/day. Lipids high. 7/07 check-up: Normal PFTs/CXR improved; Quecentin/guaifensin if lymph nodes hurt. Spleen pains. Began MP 8/08
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scooker48
Member in Phase 3
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Posted: Fri Jun 12th, 2009 23:02 |
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Beethoven's fifth symphony is sounding throughout the universe!
With tears of joy,
Sherry
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Necrotizing granulomas biopsy 10/88; Dx 12/04 Sarcoid liver spleen. 2/2/05: VitD 25/VitD125 62. 11/7/09 D25 at 6, Liver function normal 4/08; Wear NoIRs outside. No K creme used. 5/09 Liver and kidneys normal. ACE still high at 113 on 11/7/09.
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RevDennis
Member in Phase 3
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Posted: Sat Jun 13th, 2009 00:02 |
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Halelujiah - What a fantastic report!
I am so happy for you Barb. Keep the good stuff coming.
RevDennis
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01lung biopsy/lung, lymphnode, muscle & joint sarcoid; 2/24/7 @2 lpm,avoiding D & wearing NOIRS, Benicar 40q6h, 01/01/06, Mino 25mg q48h 1/11/06,mino 50mg q48h 1/28/06, mino 75mg q48h 2/14/06, mino 100mg q48h 2/27/06, Ph2, d-25=11, hemoglobin=16.9,11/22/7
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wytnez
Moderator
| Joined: | Mon Nov 29th, 2004 |
| Location: | Texas USA |
| Posts: | 655 |
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Posted: Sat Jun 13th, 2009 00:45 |
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Oh Barb I am soooooo happy to hear your good report!!! I am smiling really big right now. Keep em comin!
Saj
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sarc lymph nodes. ph1 1/05,125D 33,25D 10,ph2 5/05,ph3 12/05,125D 21, 25D less than 7
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Sunbeam
Member in Phase 2
| Joined: | Thu Dec 14th, 2006 |
| Location: | Perth, Australia |
| Posts: | 361 |
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Posted: Sat Jun 13th, 2009 04:33 |
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Wonderful news Barb. It can only get better from here,
Take care, love Lynn
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CFS. gen neuro. muscular tightening whole body pulsates|ADL's limited| 125D 30 MP 4/07 Panadol Mersyndol Noirs. Low lux home homebound. ph 2 1/2/08 25D <6 8/08
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Aussie Barb
Member in Phase 3
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19553 |
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Posted: Sat Jun 13th, 2009 11:23 |
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Thank You to All for your wonderful support..
Saturday 13th June 8.30pm. Update for this page.
I am actually off all MP meds at the moment (due to long intractable IP) while I explore working further with my healing and symptom management techniques. What is helping me at present is that I have researched some techniques, mainly Amygdala Retraining and there are a number of similar programs on the net. Maybe not for everyone. and some can tend to think of it as "out there" but my version of it is working for me. As you can see I have made some progress.
It seems I have been one to react strongly to Benicar only. I have always had to use the antibiotics to control the IP; never to create IP.
In Oct08 I weaned the Benicar down to 20mg Q8H (Q8H was just right... not sooner and not longer) and then to 10mg and then 5mg. I was still reacting strongly to that and I was able to stop it 24th May by using these techniques. all very interesting.
One day at a time. I think now that at some stage I may be able to take the Benicar without reacting to it like that. Time will tell. Meanwhile I am enjoying myself some with hope of more to come.
MP: 4 years and 9 months
No antibiotics since 8th February
No Benicar since May 24th.
25th May 09 Blood Test results: Dr is satisfied.
creatinine: while still high is improving
urate: while still high is improving
triglycerides, cholesterol, glucose all elevated.
repeat tests in 3 months as usual
Blood sugar levels - random home tests and at Drs today- all stable.
BP at Drs 120/86 ... was a little higher when I was taking Benicar.
Other meds: are less.
-panadol: not helpful now. I use 1 aspro as for pain or headache as needed. none pre pool. maybe 1 or 2 per day.
-Chelated Magnesium 500mg x 1 only as needed for slight muscle spasming or muscle soreness or start of headache. maybe 1 per day. frequency of headaches is decreasing.
-Quercetin: 250mg x 1 only as needed for throat mucus/choky cough. maybe 1 or 2 per day.
Light: not avoiding light. Wear NoIRs in bright light.
Indoor Pool: Daily for 8 months for strengthening and mobilisation:
around 60 minutes work daily.
-alternate laps of walking with backstroke with walking + paddle. + exercises including squats now. I stop when I have had enough.
-can step up out of pool with L leg but not able to take weight on R leg to step up out of pool.
Summary:
-swelling: density of swelling is lessening. creases, wrinkles appearing.
-weight: has stayed same. body reshaping.
-physically: I have been working on and pushing thru the hip/back/legs/muscle pain and stiffness on land. At first I did overdo it and really paid with terrible pain when walking for the next 2 days. I also achieved my goal of going to the beach and walking along the Boardwalk, and I did it in steps of walk/ rest on seat of the wheelie walker. and I went into some shops.... and the next day I walked /stopped around the close neighbourhood. oops.. too much..
The next couple of days, to try to walk it out, I got up from my recliner about every hour and went for a very short walk out to the driveway. and no pool those 2 days. (for other reasons)
I have hung washing and brought it in. This also involved going up and down a step and a ramp that I needed help with before.
We went shopping for some pretty flower plants for the garden. and I sat out in the walker while DH planted them. another first.
I can go to the shops now for a short stint.
and... as above, I went onto the beach.
and... I am learning something new every day, and this in itself is exciting.
-tailbone is less painful on short trips but not for longer than half hour.
-R hip/back pain stiffness is lessening. still painful when walking more than a short distance
-R flank/kidney area: occasional mild.
-R abdo: will flare when there is stress ie new computer setting up etc, so still fragile.
-chest pressure: none at present
-eyes: remain glazed and bloodshot with black rings. some of the bags may be taking up I think.
-Ears: white flakes minimal. no ear wax yet. L ear more.
-cognition: is improving. I am more alert and taking an interest in some basic details around the home. But.. I cant sort stuff out yet.
-esophageal: has lessened ie less time of it. sometimes none.
-stomach is more settled.
-sinus/choky cough continues. cough drops to resolve. and if needed, Quercetin.
-L top Teeth: irritation all but gone.
-GI bloat at night. none
-short of breath on any exertion. Breathing has improved overall, in that I can do a very short duckdive at the pool. Oxygen at Drs today is 98%. He was surprised and pleased.
-lesions: a lot of small bits came out of skin. full body, upper arms. I am able to choose to leave them alone.
-elbows: dry lesions improving
-Feet, ankles: puff gradually decreasing. skin improving.
-L leg is slower, feels heavier to move than R leg.
can step up out of pool with L leg but not able to take weight on R leg to step up out of pool or to do balance exercise. working on it.
-toenails: need digging out less.
-knees getting out of the car and recliner chair: mainly improving
-mentally/emotionally: can be fragile. I realise that I have been dealing with the symptoms of Depression and denying it. DH pointed it out to me.
-outlook: I have reason to hope now. looking forward to living my Life. I have a passport application ready to fill sometime. and am thinking about when I will be ready to have some driving refresher lessons. These things may seem far off but it is helpful to me to focus and plan.
-concentration: have been able to read AR book in stages to help me learn to manage symptoms. I was able to read and digest over days. not impulsively racing thru it.
-very little tv watching.
-sleep: night: wakeful with pain
sleep deeply when asleep day or night.
-strength is very gradually improving.
-shower: standing. stability improving.
-standing time: can stand a little longer. sit to rest when needed.
-walking: doing more as above. walk rest walk rest.
-dressing myself more daily. -Getting me dressed is still an industry at this point. exhausting.
-cool weather: rugging up, but I warm up very quickly when walking.
I am thankful for DH's full support where I need it, and also his being able to move and support me with the big changes that are occurring. He is reading the book with me so that he can understand and support me.
I am thankful for my Friends support. Thank you
All best wishes to All, Barb ...
Sunday 5.30pm
Thank you Trevor...
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Adding a note here for my personal record only.
Having had a talkative visitor to stay for the weekend, I have made some interesting observations.
I have not been out in society much, so I am unsure whether it is that I am not ready for handling conversation with all, or if it is more intense sometimes. I am ok at the pool, but that is not full on.
In this situation, now that my symptom level is easier, I can feel OK, then feel the stress building and begin to feel sick, suffer more pain - whereas when my symptoms were at a higher level I couldnt feel the symptom increase as it was building- but would feel it afterwards.
So now to continue to take good care of myself, I have to diplomatically protect myself in this situation in the future. I will gently put my hands up in the 'stop' position to break the conversation so I can have a break.
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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Dr Trevor Marshall
Foundation Staff
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Posted: Sat Jun 13th, 2009 12:55 |
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As Barb says, as we learn more about the MP it becomes more and more obvious that VDR dysfunction is the key mechanism leading to disease, and that although antibiotics hasten recovery, many members will be able to reach recovery without them. benicar starts your immune system killing the microbiota. As long as your immune system keeps killing the microbiota, this is all that matters...
See, for example, my Prague MP presentation at:
video:
http://vimeo.com/4293599
transcript:
http://autoimmunityresearch.org/prague_2009/MP.pdf
Amy's presentation from Beijing: http://vimeo.com/5106259
And my presentation from Luzhou, China, which will be online later today...
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Russ
Member in Phase 3
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Posted: Sat Jun 13th, 2009 20:21 |
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Dr Trevor Marshall wrote: As long as your immune system keeps killing the microbiota, this is all that matters...
Barb, I am really glad to hear that you are doing better. The amygdala retraining sounds interesting as I know that is an area of my brain that is highly affected by this disease.
Dr. Marshall, if a patient drops back to Benicar only, how can they be certain that the immune system is still killing the microbiota and that there is a net loss of bacterial cells? I would think that for those patients for whom Benicar alone is *not* enough to make progress, that those patients would still feel their baseline pre-MP inflammatory symptoms on Benicar only and therefore that just the presence of inflammation would not be enough to make the determination. Sorry if I am slow to understand this.
Russ
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Lyme, MCS, ADD, optic nerve inflammation | Phase 1: Jul '06 | Phase 3: Jul '07 | 25D: 5 ng/ml (Oct '09)
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Dr Trevor Marshall
Foundation Staff
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Posted: Sat Jun 13th, 2009 23:55 |
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Russ,
When people stop taking Benicar two things kick in - they lose organ protection, and they lose immune system activation. The first occurs within hours, the second over a period of weeks. Barb weaned Benicar very slowly, so as to minimize both problems.
The easiest way we can be sure that there is a net loss of bacterial cells is when there is immunopathology. The problem which occurs when some of us are so ill, or perhaps have a particularly pernicious microbiota, is that immunopathology is sometimes hard to control. There are some palliative drugs which work to reduce immunopathology, but most do not. Barb has been struggling since before her hospitalization, and the decision to take a step back and rest for a while makes sense to me. She has been suffering so much, and there is only so much that a human body can take.
Healthy people do not get immunopathology at all. And in between the two extremes are pretty well all the rest of us The antibiotics are an important part of recovery for those of us who can use them, and they allow more control of the killing process.
Most of us will have important events from time to time which will dictate that we drop antibiotics for a while, and just allow the Benicar to do its work slowly in the background. But those of us whose immunopathology becomes more intense as the antibiotics are weaned do not have that option, and have great difficulty balancing their lives.
I have already begun to focus on how we can help people with severe immunopathology still manage a reasonable quality of life, and that research has been helped by a number of my colleagues who have been through, or are still struggling with, overexuberant immunopathology. Managing extreme immunopathology will remain our focus over the next couple of years, I think
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JanEE
Member in Phase 3
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Posted: Sun Jun 14th, 2009 01:50 |
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Trevor, thanks for that. It's good to be reminded that the MP is a work of art in progress. I appreciate that you're focusing on overexuberant IP, which I'm sure a lot of us eagerly await new information. Thanks so much for all you have done, and are doing for us.
Jan
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CFS, FM hypothyroid 125D69 Ph1 5/05 Armour thyroid B12 for low blood levels NoIRs limited outings covered Ph2 9/06 Ph3 8/07 25D-5-4/09
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Sallie Q
Member in Phase 3
| Joined: | Mon Jan 26th, 2009 |
| Location: | Australia |
| Posts: | 99 |
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Posted: Sun Jun 14th, 2009 05:09 |
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great news Barb
and thankyou for the Amygdala link, I will be most interested
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stress57-83 b.cancer1990 20yrHotFlush SjogrensCFS 60%dysreg.vD 13.2 Sep08ph1 JanModPh2 May09Ph3 : 1,25D 30pg/mL Feb2010: 25D Jan5ng/mL
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thelymelight
Guests visiting Phase 1/2/3
| Joined: | Fri Nov 4th, 2005 |
| Location: | Ontario Canada |
| Posts: | 222 |
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Posted: Sun Jun 14th, 2009 20:24 |
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Great to hear about your trip to the beach..I sure look forward to doing that someday as well.
Could you be so kind as to provide us with the web address of the "amygdala retraining" you have been using...I am very interested in learning more about this....I did a google search and it came back with thousands of hits...I would like to know which one in particular you are using...
Thanks Barb!
Keep up the great work you are such an inspiration to us all!
Lisa
Lisa, the link is/was within the text of the post above. and sent by PM. thanks, all best, Barb ..
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Lyme, Babesia,19+ yrs, neuro-psych-cogni|Sept08-125D/30.42; 25D/8.40; Feb09/10.40; Jul09/5.60 Feb08~Olmesartan, Feb09~Ph1. Low lux-some areas of home. MEDS: Cipralex 10mg, Rivotril 1/2 of a 0.5 mg for sleep; iodine spray for thyroid, weaned Hydrocortisone
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Aussie Barb
Member in Phase 3
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19553 |
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Posted: Sun Jun 14th, 2009 22:03 |
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Thank You Trevor...
and Thank You to All ..
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Posting here my MP history: MP 4 years and 9 months.
I have not been able to manage IP to a truly tolerable and sustainable level. As per phase 1 doc some do find that Benicar alone is too much.
Although I didnt actually post it, some knew I was feeling sad, hopeless, stuck, stranded. a serious place to be. I had to find a way out of the physical and mental suffering for myself. so this is what I have done. and although I havent exactly sprung off the couch and run around, I am at least starting to do some nice things.
For those many, for whom more Benicar is helpful, all good. but more Benicar was not the answer for me. The more I took, and when I used extra sublingually, the worse the symptoms became, the more antibiotics, and the more Quercetin I was taking to settle it down.
I was in a very scary place again, when for the 2nd time the antibiotics began to stop working for me to control the IP. I began to look at the Benicar. The first time I had tried Dexamethasone, and more and more Benicar and ended in ER/Hospital with newly Dx Diabetes, dehydration, kidney and liver failure, diarrhea, rectal pain and bleeding and resultant anemia. : that is organ failure.
So, this time, I had nowhere else to go but to try decreasing the Benicar. Decreasing did steady the IP but I have never had a break. was impossible. As I decreased further further, I was still strongly "reacting" to the Benicar.
I heard about amygdala retraining et al and found I could make it work for me.
I am off the Benicar to give my body and myself a break, to give me a chance to use these techniques alone, and I will see what the future holds. I still have IP, but it is no longer threatening my organs as I am managing it this way. and maybe in the future, when I have perfected the technique, I may be able to respond to the Benicar like most people seem to.
I know that not everyone could use these techniques or would do so, but it is what is working for me. It is a tool in my toolkit for managing the IP. I at least feel to have some hope now.
I am part of the Research Team and I have always been able to explore meds adjustments and then document what happens when I do this and when I do that. We have learnt more and are going to learn more yet.
I am doing what I need to do for now to find some relief. to see where this technique can take me at least physically so I am in better shape. I am not one to plan way ahead. I have all my Benicar and abx here, and I can start them again any time I want to.
I'd be silly to stay in a rut of sadness and fear and hopelessness and not do something for myself to turn it around. I dont think anyone can know how it truly has been for me. This is my story for whatever help it may be to others. This or similar technique may help some people to manage their symptoms while staying on MP. It is helpful for me.
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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