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Aussie Barb
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Posted: Thu Oct 6th, 2005 19:35 |
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this post from Dr Marshall
says in part quote verbatim: "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 "
Reply from GeorgeinRollaMO:
Don't think of the two years ahead. Think of how bad the last twenty years were, and the next two years will seem like a pittance to pay for an additional twenty years, or more, of good health to come. 
Dark Vader (aka, George)
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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Aussie Barb
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Posted: Fri Oct 7th, 2005 16:40 |
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Saturday October 8th 5.40am cycle 8 of PHASE 2 / level .5 / cycle 7 / Day 3 / mino QOD > increase to 75mg today / Benicar 20mg Q2-3H & 40mg Q4 to 6H night (need wakes me) / Quercetin TID.
A better day yesterday. still slow.
some occasional dry discomfort / coughing in throat.
herx has settled. one day at a time.
Have been having some slight pinching Heart / chest pressure herx.
very mild headache early in night. panadol. slept well after MN.
legs and seat and back discomfort continues. feet ankles etc very swollen.
scalp and ears itching after mino this morning.
antbite cramps on waking.. quick took mino (42H) relief.
I seem to use the mino up quicker than 48H.
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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Aussie Barb
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Posted: Fri Oct 7th, 2005 19:23 |
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Some recent thought processes took me back to thinking and feeling what it had been like for me in the last few years.. a decade. and more...
I had been in such emotional pain.. deep desolate.. inconsolable dreadful pain...
and all the psychological causes are trotted out as to why this may be happening... and I worked so hard to contain it, and to process it all..
Now after 12 months on MP, I suddenly realise that all this pain and desolation has gone.. I am no longer depressed.. I am not relying on those meds and processes etc to uphold me..
I was SICK!!!
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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Dogster
Member in Phase 3
| Joined: | Mon Jan 24th, 2005 |
| Location: | Kansas USA |
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Posted: Fri Oct 7th, 2005 21:58 |
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!!!!!!!!!!!!!!YOU WERE SICK!!!!!!!!!!
Yeah.
Isnt it almost bizarre, freaky, --what is the correct word--that the infection/inflammation, ie the physiology can so much CREATE or at least influence greatly the person, the brain, the nervous system, the emotions,the psyche, the self . . . .
Dog
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CFS lyme RSD: pain migraine| tylenol fioricet flexeril tramadol temazepam| acidoph guaif/cold| Q| Cut D/exp Feb05| NoIR Mar05| June05 Comm Beni Q8H| July05 mino| Jan06 PH2| Aug06 1,25D=29 25D=17|
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Aussie Barb
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Posted: Sat Oct 8th, 2005 17:57 |
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Thanks Dogster...
Sunday October 9th 7am cycle 8 of PHASE 2 / level .5 / cycle 7 / Day 4 / mino QOD > increase to 75mg yesterday / Benicar 20mg Q2-3H & 40mg Q4 to 6H night (need wakes me) / Quercetin TID.
tired day yesterday. slow.
some occasional dry discomfort / coughing in throat.
more herx. one day at a time. Q2H Beni prn. just a couple of times.
Have been having some slight pinching Heart / chest pressure herx.
sleep is deep between wakes. doesnt seem helpful.
legs and seat and back and neck discomfort continues. feet ankles etc very swollen.
scalp itch. face palate throat ache.
It seems long and hard. I want to be able to move and walk, and without payback.
I am impatient but I can be / am patient.
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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Aussie Barb
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Posted: Sun Oct 9th, 2005 18:31 |
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Monday October 10th 7.30am cycle 8 of PHASE 2 / level .5 / cycle 7 / Day 5 / mino QOD > increase to 100mg today / Benicar 20mg Q2-3H & 40mg Q4 to 6H night (need wakes me) / Quercetin TID.
tired day yesterday. slow.
some coughing wheezing. more when laughing. I take Beni and cough drops.
Q2H Beni prn. just a couple of times.
Have been having some slight pinching Heart and under left arm / chest pressure herx.
sleep is deep between wakes..
legs and seat and back and neck discomfort continues. .
scalp itch. face palate throat teeth ache.
feet ankles etc very swollen.
Sticky eyes this morning..
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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CLefelt
Member in Phase 3
| Joined: | Sun Oct 24th, 2004 |
| Location: | New Jersey, USA |
| Posts: | 318 |
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Posted: Mon Oct 10th, 2005 12:57 |
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Even with the wheezing, glad to hear you're laughing!
Carol
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Lyme Bartonella CFS FM Chly Pneu; Klonopin Florinef Lexapro TriEst Prog 10/04: 25D=9 1,25D=70 4/05 4/06: 25D=6.2 1,25D=20.9 8/06:25D=<7 1,25=13; Mino 11/36/04 2Abx 3/19/05 3Abx 4/27/06
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Aussie Barb
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Posted: Mon Oct 10th, 2005 17:48 |
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Thanks Carol,
I am a bit of a laugher.. too much so.. I start laughing and next thing I am choking.. Pre MP it was awful.. Now, I get my Benicar and my cough drops into me quick smart..
I am happy.. both despite and because I am dealing with the healing.
Barb ....
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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Aussie Barb
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Posted: Tue Oct 11th, 2005 02:37 |
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Tuesday October 11th 3.30pm cycle 8 of PHASE 2 / level .5 / cycle 7 / Day 6 / mino QOD > increase to 100mg yesterday / Benicar 20mg Q2-3H & 40mg Q4 to 6H night (need wakes me) / Quercetin TID.
tired. slow.
quiet. finding it physically tough going at the moment. the tiredness. one day at a time. am ok mentally, emotionally.
sleep is deep between wakes..
toes rash again.
legs and seat and back and neck discomfort continues. .
scalp itch. face palate throat teeth ache.
feet ankles etc very swollen.
Sticky eyes this morning.. antbite cramps under arm.. especially if I reach.
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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DNStog
Advocate
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Posted: Tue Oct 11th, 2005 03:58 |
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Barb, on Monday, you wrote:
I am happy.. both despite and because I am dealing with the healing.
You, too understand how important a positive attitude and a never give up stance are in our healing.
Whenever I start to feel sorry for myself, I remember the hellish drug induced symptoms my husband went through as he fought gastric cancer with an experimental cocktail of chemo drugs that might give him a 35% chance of extending his life to two years - 5% chance if he did nothing. Nausea, chills and body spasms would resonate through his body and I would hold his head just to let him know I was there. The worst case of mouth and facial sores that his onocologist had ever seen greatly added to his misery. Add to this the lack of appetite, the nasty taste of all food, medications that sometimes eased his discomfort but were hard to swallow because of the mouth sores, the inability to stand or sit up for any length of time. He would sit and stare because his mind worked fine, but his body would not. Never did he ever think of giving up, even with the depression he frequently suffered and seldom did he complain. As you know and I know and so should those MPers who feel the most hopeless, he is currently in his eighth year of remission, feels good and is looking forward to walking his daughter down the aisle in two years and retiring in three. Recently our doctor's new nurse looked at my husband's medical chart which includes triple by-pass surgery two years before his cancer AND an abdominal aortic anuerysm repair three years after cancer and remarked "Your husband is literally a walking miracle." She is so right and if you ask him, he will tell you he would do it all over again. Giving up is not an option to anyone in our family.
Because of Dr. Marshall, Meg, Belinda and the pioneering MPer's, thankfully not one of us has to suffer as badly as my husband did to get over our chronic, deadly diseases. Their dedication to helping so many of us who are virtually strangers leaves me speechless.
Wishing you and all others well,
Donna, Phase II still cruising~~~~
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Sarcoidosis/skin, joints, lungs, nerves, Raynauld's, uveitis, hypothyroid, sinus, wt. gain, Peradontal disease, GERD-hiatal hernia, breast ca 11/06, 25D7, Synthroid, Wellbutrin, eye vits, melatonin, Milk Thistle, Quercetin, Rx glacier, cover up, low lux h
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Aussie Barb
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Posted: Tue Oct 11th, 2005 17:45 |
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Thank you Donna ..
To me, it is all relative.. depending on so many circumstances.. how sick we are and / or perceive ourselves to be, and what we are prepared to put up with or can put up with, and much more. It is something that we can only choose for ourselves for our own reasons.. it is not something we can do for others.
I have been wanting to write about this but I find it very difficult to articulate how I am feeling at the moment as there are many facets and levels to the whole situation. much like the layers of the onion.
My physical function has been limited to greater and lesser degrees for at least the last 25 years. Even so, inbetween times I have raised a Family, and I have been a very active highly functional person.
I have suffered inconsolable desolation and yet been able to laugh..
At the moment, I have the information that I have been able to go off the Thyroxine... that I am no longer inconsolable desolate... and how do I feel? do I feel elated because of these things.. perhaps I should do... I cant rise up in elation. I am flat. I am here. I am managing.
I am not at all unhappy or discouraged and I am fully into doing MP because I want a chance to find out what real Life can be.
At the moment I am so physically debilitated that I feel that I may never find out. I want to be able to be functional. I want to be able to do more than just sit on the chair and not to be faced with easing myself up off the chair like an old lady.
I can do this so easily in one way.. because it is what I have chosen to do..
and yet, it is not at all easy to do when I am faced with what I cannot do, with wanting to be able to walk and move my body. and when I am worse that way than what I had been.
I can understand why some would wonder "is this the disease getting me or the herx.." why they would wonder "am I getting worse and not better.. How can this be better?"
Underneath it all I know for sure it is the herx because the antibiotics can make it worse.
For Myself, I have no concept of the words Health or Future.. as yet they are only words.. but something must be happening as I am wanting more now, it matters a little more now and I do get upset sometimes that it is taking a long time and I feel so awful and can do so little physically..
Knowing that Dr Marshall and Meg and Belinda and Others are so well is wonderful. It can give me a hope in a way, but I have to be able to put it with Me. Right in the moments when I am faced with my own reality, it is a long time. it is tough. I feel to be in the middle of a dark night, not at all knowing how far away is the dawn, or, if the dawn will in fact come.. I can do the time, one foot in front of the other.
The many levels can be confusing and so difficult to articulate. The main thing I know is that I am committed to doing this. I am so prepared to do what I need to do. That is all there is to it. This is all I seem to be able to articulate at the moment. I thank All for great support.. it does help.
I am fully into doing MP because I want a chance to find out what real Life can be.
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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Mary
Member
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Posted: Tue Oct 11th, 2005 18:42 |
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Barb,
I only wish I could give you some of my better moments and better health...just to keep your hope alive. You have suffered more than most and yet are always willing to help us. I do think angel wings must be growing on you right now!!
Thank you for all you give to us.
Mary
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Not MP: Chronic Lyme RA. Been ill for 22+ years 8/04 tests D25 47,1,25D 39,CRP 3.3 high.. Benicar for BP only.
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scooker48
Member in Phase 3
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Posted: Tue Oct 11th, 2005 21:03 |
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Barb,
I am thinking of you right now, and forgive me if I repeat myself here, but I know our:
intelligence
networked computers
recorded knowledge
MP community
and persistance
are STRONGER than the pathogens.
Sherry
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Necrotizing granulomas biopsy 10/88; Dx 12/04 Sarcoid liver spleen. 2/2/05: VitD 25/VitD125 62. 04/07/08 D25 <7.0 L, Liver function normal 4/08; Wear NoIRs outside & for computer screen time. No K creme used.
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Aussie Barb
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Posted: Wed Oct 12th, 2005 00:45 |
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Thank You Mary and Sherry ....
Wednesday October 12th 1.50pm cycle 8 of PHASE 2 / level .5 / cycle 7 / Day 7 / mino QOD > 2nd dose of 100mg / Benicar 20mg Q2-3H & 40mg Q4 to 6H night (need wakes me) / Quercetin TID.
sleep is deep between wakes..
feeling a little better this morning. not soo tired. proves it has been herx.
took the mino and the gut herx came more as usual later..
some bone pain in upper arms.
antbite cramps under arm.. especially if I reach.
toes rash again.
legs and seat and back and neck discomfort continues. .
scalp & face itch. mild palate throat ache.
feet ankles etc very swollen.
Sticky eyes this morning..
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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Aussie Barb
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Posted: Thu Oct 13th, 2005 04:58 |
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Thursday October 13th 6pm cycle 8 of PHASE 2 / level .5 / cycle 7 / Day 8 / mino QOD > 2nd dose of 100mg yesterday / Benicar 20mg Q2-3H & 40mg Q4 to 6H night (need wakes me) / Quercetin TID.
sleep is deep between wakes..
feeling a little better this morning. not so tired.
gut herx hard at times requiring Q2H Beni. no increase of abx by the look of it.
some bone pain in upper arms.
very slight headachey at times. medicate.
legs and seat and back and neck discomfort continues. .
scalp & in particular face itch. face hands oily continues.
feet ankles etc very swollen.
mild sticky eyes..
Foot: One day when I was a child the arch of my left foot suddenly with no known reason, felt as if something had torn in there. It was sore to walk. Recently this soreness has been coming back. interesting.
Lump: Right inner above wrist, subcutaneous. seems to be enlarging. not sore, no symptoms.
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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Aussie Barb
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Posted: Thu Oct 13th, 2005 21:30 |
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Friday October 14th 10.30am cycle 8 of PHASE 2 / level .5 / cycle 7 / Day 9 / mino QOD > 3rd dose of 100mg today / Benicar 20mg Q2-3H & 40mg Q4 to 6H night (need wakes me) / MT / Quercetin TID / PBX BID
sleep is deep between wakes.. better.
feeling a little better this morning.
I think I am coming out of the woods of thyroxine cease etc.. knock on wood.. & the particular Heart symptoms that I attributed to the T have ceased now. ie chest pressure when lying down..
gut herx hard at times requiring Q2H Beni. no increase of abx by the look of it.
some bone pain in upper arms.
very slight headachey at times. medicate.
legs and seat and back and neck discomfort continues. .
scalp & in particular face itch. face hands oily continues. sometimes just the tip of one finger will feel sore (not the typing finger) hehe
feet ankles etc very swollen.
sticky eyes better today..
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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Aussie Barb
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Posted: Fri Oct 14th, 2005 23:23 |
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Saturday October 15th 12.30pm cycle 8 of PHASE 2 / level .5 / cycle 7 / Day 10 / mino QOD > 3rd dose of 100mg yesterday / Benicar 20mg Q2-3H & 40mg Q4 to 6H night (need wakes me) / MT / Quercetin TID / PBX BID
sleep is deep between wakes.. tired.
subcutaneous (under the skin) ouch factor has risen again recently.
transient gut herx and all over. I feel like I walk like a penguin due to herx.
some transient bone pain in upper arms.
very slight headachey at night usually. tylenol settles.
legs and seat and back and neck discomfort continues. .
scalp & in particular face itch. face hands oily continues.
feet ankles etc very swollen.
sticky eyes again today..
TODAY for the First time: I have eaten fruit straight from the refrigerator without having to warm it or wait till it is room temperature. this never happens forever. I can never usually bear to.
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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Aussie Barb
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Posted: Sat Oct 15th, 2005 18:10 |
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My Reply @ Why do some patients suffer more than others on MP?
I am another like Brad who has never had any antibiotics prior to MP. Pre MP I have had similar reactions to many many Homeopathics and some other treatments, as what I am having on MP, but the good thing about MP is being able to adjust the meds etc to achieve tolerable herxing..
I have been 'ill' for a very long time... most of my Life.. Managing what I have been thru in my Life, and what is in my Life, and with the use of all the meds, - within the Lifestyle that I have now, - being supported, and because I have necessarily separated Myself from the world of expectation, have made it possible for me to manage and do MP..
as Meg says, many Human Nature Factors coming together..
I document even my small easy to bear symptoms to help others to know what herx can be. For me, the Board serves as a good distraction from my symptoms, and I am happy to be a part of this great Community.
all best to All, Barb ..
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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Aussie Barb
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Posted: Sat Oct 15th, 2005 19:07 |
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Sunday October 16th 8am cycle 9 of PHASE 2 / cycle 8 at level .5 / Day 1 / mino QOD > 100mg / Benicar 20mg Q2-3H & 40mg Q4 to 6H night (need wakes me) / MT / Quercetin TID / PBX BID
still need to take probiotics twice per day to keep IBS away but it may be improving a little. Quercetin TID also a necessity. MT also.
emotional stability is a good experience. am almost off the NPS. I am astonished and wondering if it can last. one day at a time.
sleep is deep between wakes..
all symptoms same.
Left foot arch as previously mentioned is still niggling constantly.
I feel that coming off the thyroxine mucked up my herx a bit but feel to be getting back on track now.. I hope. feels a little better than the last couple of weeks, although needing to rest a lot.
legs and seat and back and neck discomfort continues. feel pulsing.
.
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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DaveW
inactive member
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Posted: Sat Oct 15th, 2005 20:24 |
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Hi Barb,
I sympathize and empathize with your struggles. Your strength and commitment is inspiring.
For you (and others), I have a couple of simple stretches to help with the penguin gait, and the sore back. I have these problems as well, and have learned these stretches recently from chiropractors and physiotherapists. I am not sure they will help everyone, but they are quite benign (in that even if they don't help you, it is very doubtful that they will hurt you).
To stretch and loosen the lower back and hip stiffness, cross your legs by placing one ankle on the knee of your other leg. The knee of your crossed leg should be held at approx the same height as your ankle, or close to the same height, if you can.
Then, bend your upper body forwards to stretch (trying to make the lower back bend and stretch more than the upper back). Push to the pain threshold. Pushing slightly past the point where pain begins may be necessary to achieve results, as our lower pain threshold may cause us to feel pain before any real stretching begins. However, this should be done slowly and with care. The same process is then done with the other leg.
This should be done with several repetitions with each leg - about three times a day. After a couple days the degree to which you can bend forward should increase, and the penguin gait should decrease.
If you find that you can bend further forward with one leg up than you can with the other, it means that one hip (or side of your back)is tighter than the other. They should become equal if you do the stretch a couple times daily. Keeping the lower back and hips stretched by doing this exercise regularly should also help to reduce lower back pain, and increase your back's flexibility.
To directly reduce lower back pain:
The exercise of core abdominal muscles can (amazingly) reduce lower back pain. The following exercise is gentle and easy - to accomodate those with a stiff, sore back and little energy.
Sit backwards in a high back chair that has no arms. This will have you facing the back of the chair. Sit as close as you can to the back of the chair. Then, wrap your arms around the back of the chair (or, hug it).
Then, (keeping your back straight), push your stomach muscles (from pelvis to rib cage) forward - towards the back of the chair. Push as far as you can and hold until the muscles tire. Do several repititions, with short rests between each push. That is all there is to it. Try it just once. I think you may be surprised.
The above exercise can be done alone. However, the following is an extension of this exercise, that gently exercises both the stomach and lower back muscles.
After completing several repetitions of the above "abdominal push" exercise, sit up straight in the chair. You may wish to reposition your feet to ensure stability. Then, place your hands behind your head, and lean back (only slightly - perhaps 10 to 15 degrees), and then move back to sitting straight up. This is similar to a situp, except your position only ranges from sitting straight up, to leaning back slightly. If you keep your back straight as you lean back and straighten, only a few repititions can be amazingly effective.
As your back stengthens with this exercise (over a week or so), you would have the option of leaning back a little further (or to whatever extent you feel comfortable). But try the exercise first with very little leaning. A great degree of leaning is not necessary for this exercise to be effective, and going back too far (before your back and stomach muscles are strengthened), could be asking too much of weak and unused muscles.
I think these exercises are especially designed and effective for those whose disease has made them quite sedentary, and whose sedentary lifestyle may be contributing to their back stiffness and soreness. They are especially suitable for such folks because you can do them while sitting in a chair, and they take very little energy.
My kind of exercise!
Hope this helps. All the best!
Regards,
- DaveW
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MP Aug14/04,Pre-MP D=19.6,1,25D=37 ratio 1.89 P2>12/27/04.Back to P1 fall/05.Back to P2 05/06. 21 yrs neuro-lyme not dx til 11/05. OlmesTR 40 mg/7hrs. Major: Weakness,IBS-C,pain,bad sleep,anxiety,depression,cognitive focus,memory,CMV,epilepsy & osteo
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