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vda51
Member in Phase 3
| Joined: | Tue Dec 28th, 2004 |
| Location: | Perth, Australia |
| Posts: | 460 |
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Posted: Sat Aug 22nd, 2009 03:19 |
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Good to hear Barb ,slowly slowly  gets the worm
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Reiters Syndrome 10yrs 25D=27 1,25D=43/ Crp56.33/ WCC8.7/ lymphocytes 1.2/ BP 91/59 NoIRs/ LIGHT & D AVOID| Beni Mar05 Mino Apr05| FEB O8 25D=6 DEMI 112MG
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HeatherK
Member in Phase 2
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Posted: Tue Aug 25th, 2009 12:06 |
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ATTA A GO Barb! Out to beach , shops, and dinner! Yes, you are still struggling but even baby steps are going forward. Its encouraging to me to watch how you just..... keep on....going on.... thanks again for sharing. Wishing you continued progress on your journey..
Hold Fast
Heather
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CFS - crashed 5 yrs+ before diagnosis and starting MP.2YEARS ON MP Sep 09. (Sept 07 25D=24pg/ml, 1,25D=47.5pg/ml) Sept/09 25D= 7.6 Started Phase Two Mar 4/08. Mod Phase 2-Apr/09. In blackout home still, wearing NoIRs, presumed celiac.
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Deb Grabetz
Member in Phase 3
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Posted: Wed Aug 26th, 2009 13:39 |
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Yay Barb!! For having limited energy...I would still label you as the "Energizer Bunny"...as Heather says...
you just keep on going!!  Luv You! Deb
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Sarcoidosis/lungs, lymph,liver, GI, neuro, D125,42,D125,18 (5/09) Ph1,7/07, Ph2,3/08,cover up, NoIRs, low lux home,Back to work after 2 yrs; 4/07D25/11 1/08D25-0 Weaned Pred with MP/Massage
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Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
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Posted: Wed Aug 26th, 2009 21:30 |
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Thank you All : )
Limited movement and muscle pain are the biggest things I have to overcome at present, and as you say I am working on it..... and I think that if it is sore, it Must be Getting Better mustnt it : ) : ) I feel that it is.
B for Bunny ..
Note: Since starting Mino: weight is slowly increasing again.
I can notice the fluid retention IP esp abdo, more during some parts of the 48H cycle. It would be affecting joints and movement etc, also Chest pressure is increased at that time.
I dont want to start taking the Mino more frequently, and I cannot stop taking it because it is palliating otherwise intolerable symptoms.
I have a feeling overall that I am improving so at this point that is overiding any other concerns.
Friday 28th August:
Took 4th dose of mino 75mg last night. I can feel the palliative effect is starting to wane at this dose level ie the symptoms starting to break thru. eg. feet very sore, the skin on my feet is dry and starts to break down at little toes. skin starts to break down at corner of mouth, under L arm, L ear, and other sensitive areas.
Because of my previous MP experience with the effect of the antibiotics quickly 'running out' at each dose level, I was really hoping that had changed. and this is why I dont want to get into taking the mino more frequently. (the difference now being that I am not taking Benicar at this point)Starting at 50mg and really wanting to persevere, I was barely able to scratch thru to 7 doses, but by then these symptoms really were intolerable. I will persevere as long as I can at each level.
afternoon:
The swimming times have changed. Usually we have had the morning free and the afternoon to recover. The change has meant going to the pool in the morning instead of the middle of the day, coming home just after 10am needing lunch and a long nap to recover : ) ie I am muscle sore and tired for more of the daytime. aaahh well.
accomplishment: I feel a real sense of accomplishment that we cooked a cake to try a recipe of my Nana's from the book... and we cooked a casserole.
Saturday 29th August
Observations: I have been thinking that my hair may be thinning again. and for the last long time, (?maybe 6 months) there are some parts of my hair (L side/back and forelock) that feel frizzy to touch. do not look frizzy. and Today I've noticed a small whitish scar at my forehead hairline that I dont recall seeing before. and interestingly, the hair is white at that spot. With all the other skin happenings, this is one more.
10am: skin symptoms intolerable. took mino 100mg dose #1 @ 36H since 75mg dose #4
Monday 31st August
Stopped oral B12 trial at 1 month. and straight away the desperate need for Mino to palliate skin symptoms is finished. No Mino - no worries. interesting result re B12.
Tuesday 1st September
Having extended the mino time out to 63H I was satisfied that I no longer desperately needed it as I have done. I still felt the need of some support so now I have continued on, taking mino 100mg to see how this goes, rather than take nothing. I will experiment with using the Benicar again some time.
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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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Sunbeam
Member in Phase 2
| Joined: | Thu Dec 14th, 2006 |
| Location: | Perth, Australia |
| Posts: | 346 |
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Posted: Sat Aug 29th, 2009 06:36 |
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Wonderful to hear of your activities Barb. It is so nice to be interactive and to be able to enjoy some social time even if it is hard going. I hope it will all become easier for you as your healing progresses.
Take care and rest plenty,
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
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| Joined: | Thu Jul 22nd, 2004 |
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Posted: Tue Sep 1st, 2009 01:17 |
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Thank You All ..
Update: Tuesday 1st September.
Start MP August 04
No Antibiotics from 8Feb09 to 7Aug09.
No regular Benicar since May 24th 09.
7Aug09> restarted Mino only
Present Meds: 29th Aug increased to Mino 100mg QOD
Other meds: 2 panadol or 1 aspirin prn after swimming thru the night for muscle soreness.
-Chelated Magnesium 500mg x 3 a day for slight muscle spasming and muscle soreness.
no light avoidance. some increase in eye sensitivity at times.
-Indoor Pool: 10+ months: Daily 45 minutes walking and swimming + 15 minutes exercise. I enjoy the freedom to move in the water - going slower when I need to for chest pressure. Caution to starters: remembering that I was much slower and less capable when I started.
-Shops and beach as able for my on land exercise. taking care to not walk further than is tolerable.
-garden: QOD exercise by > stand and water with wheeled walker handy to walk or sit on as required.
I have put together a small purse with bare necessities for me to start carrying on the walker handle when we go to the shops. I cant recall how long it is since I was 'going out' or carried a purse. perhaps 4 years.
I have a new ring made to fit my finger. happy.
R hip: no pain in the water any more, but still a limp when walking any distance on land.
Within myself I feel brighter. I dont feel "well" but I do definitely feel better than I was. If I think "can I drive the car yet?" the answer is a resounding No. I am not physically, mentally or emotionally strong enough yet.
Pool:
I couldnt for a long time remember my pool Journey to recognise how far I have come. it seemed to be taking forever for what?
-But now, I am remembering: Oct 08 felt ready to start at the indoor pool to begin mobilisation.
-was in wheelchair
-end Dec 08 till present: wheeled walker
When I started, because of chest pressure, I had to go slowly. because of hip pain had to have breaks after each couple of laps.
I walked the laps slowly moving my arms, and would sit on the ledge in the water at the side to have a break.
-R hip/lower back was very troublesome/painful. and I couldnt lift my arms up or reach my sides / back. my hands wrists were very weak and sore.
-and that I couldnt bear my chest to be in the water because of the water pressure on it,
-nor my face to be in the water at all.... and now I can duckdive and stay under for a count of up to 16 seconds.
-and I can alternately backstroke /walk - continuously for 45 minutes.
-I am practicing a little swimming forward each day as well. the in/flexibility of my back seems to be the factor affecting/affected.
-My balance on R leg with L leg extended front, side, back, in the water is improving.
To those interested in mobilisation: Always check with your Dr. It takes much time, effort and persistence. enjoying the work is a help. I enjoy the water- and movement is possible, and easier, in the water. Because it is easier to move in the water, and because of not feeling the full effects whilst in the water, it is essential to set a time limit to protect against overexertion.
best wishes to all, Barb ...
Wednesday 2nd September
3 monthly Drs appointment:
BP 113/86
HbA1c 6.3 stable
25D-30.4ng/ml. Nov08 25D=10. interesting. still avoiding D. not avoiding light since Oct08 - the lab result for 25D comes under the heading > Endocrinology > sub heading > Hormone Studies > 25-hydroxy Vitamin D
Dr happy that most of blood tests are going back to normal.
Offered medication for elevated Cholesterol, Triglycerides.
noted also Uric acid remains slightly elevated.
Continuing to manage the IP day to day.
Friday 4th Sept:
Tired but glad to have the opportunity to go to the pool, and I can manage it ok when I get there.
I read in the Drs newsletter about > "Delayed onset muscle soreness (DOMS) - a phenomenon of muscle pain, muscle soreness or muscle stiffness that is felt 12-48 hours after exercise << and that it will usually be resolved within 2 weeks of starting the exercise." - and here I am almost 11 months later still suffering DOMS each day after swimming! ahh well, I am making progress.
Noting here that I continue to have spot lesions -presumably sunspots healing - as has been happening throughout MP, leaving small white freckles on arms and legs.
Saturday 5th Sept:
sleeping a tiny bit longer between wakes. still 2 wakes per night.... with really dry mouth. IP lower back and pelvis. Have taken 4th dose mino 100mg last night. soles of feet are very dry and sort of burning. (neuropathy) heels cracking.
Cooking with help is good rehabilitive therapy for me. Having the IP to more tolerable is a help. I can see that I am improving (that I am even able to contemplate doing it). yes, tired after, but still went swimming and had to go slower.
Sunday 6th September: Happy Father's Day
I record here my appreciation for wonderful physical, mental and emotional support.
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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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Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
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Posted: Mon Sep 7th, 2009 23:24 |
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Thank You All ..
Update: Tuesday 8th September.
Start MP August 04
No Antibiotics from 8Feb09 to 7Aug09.
No regular Benicar since May 24th 09 is not considered to be MP. I am doing what I can to keep all tolerable as I work towards recovery.
7Aug09-8Sept09 Mino only
10Sept09 restarted Benicar 5mg Q2-3H as needed.
Present Meds: 29th Aug increased to Mino 100mg QOD
Other meds: 2 panadol or 2 aspirin prn after swimming thru the night for muscle soreness.
-Chelated Magnesium 500mg x 2 or 3 a day for slight muscle spasming and muscle soreness.
no light avoidance. some increase in eye sensitivity at times.
-Indoor Pool: Almost 11 months x 7 days a week at the pool: 45 minutes walking and swimming + 15 minutes exercise. I enjoy the freedom to move in the water - going slower when I need to for chest pressure. Caution to starters: remembering that I was much slower and less capable when I started.
-I can feel my muscles are improving.
-less chest pressure so far this week- even though I am moving faster in the water.
-knees to get up out of car or recliner: not as painful, easier most of the time.
-R hip: after exercise- can feel muscles pulling in R hip and groin. hopeful of healing.
-not so likely to go to sleep in recliner at night.. but I am having a decent 1 to 2H nap every afternoon.
-still a high level of IP.
- 3 small spot lesions on face and others > body and arms and legs
-just for interest. eating a moderate amount (about a handful) of fresh crisp green beans, veges, gives me needed crunch and helps IBS.
To be able to travel and visit Family I need to be able to use 'others' normal bathroom with no help aids. I have identified that part of what is holding me back is some inflexibility in my lower back. I can particularly feel this when I am practicing swimming forward. I have started more back specific exercise. I can see that it has taken a long time to achieve what I have achieved so I know to be patient and to keep working at it, and to not overdo it. I have always been so impatient to be well so this in itself is amazing.
best wishes to all, Barb ...
Tuesday Sept 8th Fell asleep in recliner for 2H again 6-8pm - straight after saying it wasnt happening as much. : ) the pool is very tiring though.
stopped mino. 8pm dose #1 Zith 30mg.
Wednesday Sept 9th
After the pool today, walked to a shop with wheeled walker.. R hip is better than it has been. eyes gritty, sore.
Thursday Sept 10th
sensitive area inflamed intolerable for weeks. have tried everything. tried Benicar 5mg with relief. relieves for up to 3H and then overall IP increases. continuing.
Pool with help all good. had a nap.
Friday Sept 11th
Noting:
-Neuropathy in 2 smallest fingers L hand is almost gone. I have had this for 2 years and it seemed it would never go. I can close my hands better. still some tightness. hands and wrists not painful now. I draw them thru the water when walking at the pool.
-must be my back> I can reach the car door handle better than I could.
Cannot manage without meds so am still at the same old game of doing whatever I have to to keep all tolerable. If I take the Benicar 5mg orally the IP is intolerable- mainly RUQ.
using it locally 2-3H as needed. relieves inflammation. increases overall IP but remains 'tolerable'. panadol for pain.
Saturday Sept 12th
-neuropathy and dryness in soles more pronounced today (is day 4 since Z dose)
-Inflamed area is settling some with the applied Benicar 5mg Q2-3H for 2 days. am now able to extend a little further than the 3H.
-L underarm is still inflamed. painting on Benicar.
-fatigue is slowing me more today.
-R 'hip' pain is moving more towards being a pulling in the groin when walking anything past around 20 metres(yards) on land only.
-I notice I can more easily reach some things in front of me in the car.
-needed help to get L leg out of the car today after swim and a walk. more pain.
-puff is slowly decreasing. I havent given up yet that one day I may be able to wear some 'normal' 'nice' 'shoes'.
This week I am not having the symptoms of needing the magnesium. (muscle spasms/cramp, headache) Taking just 1 mag per day instead of 3.
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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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Sunbeam
Member in Phase 2
| Joined: | Thu Dec 14th, 2006 |
| Location: | Perth, Australia |
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Posted: Tue Sep 8th, 2009 07:22 |
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Hi Barb,
What a positive report. it is so ice to see you having some quality of life again even if you still have a long way to go.
keep up the good work,
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
Research Team
| Joined: | Thu Jul 22nd, 2004 |
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Posted: Mon Sep 14th, 2009 21:49 |
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Thank You All ..
Tuesday 15th September.
History:
Start MP August 04
No Antibiotics from 8Feb09 to 7Aug09.
Mino 7Aug09 to 8Sept09 stopped
Benicar weaning started Oct08: details here. Aussie Barb
No regular Benicar from 24May09 to 10Sept09
Update:
Antibiotics: 8Sept09 changed from Mino to Z- 30mg dose #1 to try to relieve intolerable inflammation. today is day 7
Benicar: 10Sept09: Using Benicar 5mg either locally or sublingually only as needed Q3 to 6H to relieve intolerable inflammation. is not considered to be MP. I am doing what I can to keep all tolerable as I work towards recovery.
Other meds: 2 panadol prn for muscle soreness. approx 6 per day.
-Chelated Magnesium 500mg x 1 a day for slight muscle spasming and muscle soreness. when I was not taking any Benicar or abx I had to use Magnesium x 3 per day to stop cramps, and if I tried to decrease I would get a headache. When I restarted the Benicar I no longer needed the magnesium.
no light avoidance. some increase in eye sensitivity at times.
Avoid D foods but will have a piece of fish about once every 4 months. I dont worry about small amounts of egg within etc. but I dont eat straight eggs for breakfast eg.
-Indoor Pool: 11 months x 7 days a week at the pool: 45 minutes walking and swimming + 15 minutes exercise. I enjoy the freedom to move in the water - pace governed by chest pressure. DH walks by my side and takes my hands to help me to my feet at the end of each lap.
Caution to starters: remembering that I was much slower and less capable than this when I started.
-I can feel my muscles are improving.
-can see legs reshaping as puff decreases.
-toenails dont have to be dug out now.
-R hip: during/after exercise- no pain in actual hip now. can feel muscles pulling in R hip and groin when walking anything past around 20 metres(yards) on land only. hopeful of healing.
-spot lesions
-neuropathy and dryness in soles. heels cracking, L badly. attended.
-L underarm inflammation resolving with local and s/l Benicar
-hands tight and sore to flex
-continues painful to stand or to sit arms extended doing anything.
-more fatigue this week > cant be bothered.
-still a high level of IP. weight increases with IP. interesting that although the density of the inflammation decreases eg abdo, legs reshaping, the weight is independent of that. doesnt seem to make sense.
Using the Benicar locally to manage the inflammation. Tried swallowing Benicar 5mg orally and IP is intolerable- esp RUQ. Because it is ok locally, I tried sublingual and so far that seems to be ok with tolerable IP.
best wishes to all, Barb ...
Wednesday 16th September
1 day at a time to see whether or when I need to continue with Z at this time. I have felt the up and down IP effect of the Z.. not sure about the palliative effect because of using the Benicar at the same time. Thankfully the acute inflammation areas are resolving with the applied and Q3 to 4H s/l Benicar 5mg. will continue both for now. Benicar 5mg s/l required Q3H.
Thursday 17th September
Day 9 dose #1 Z. longest cycle I have been able to manage on Z, but this time is without mino. Continued Benicar 5mg s/l Q3H as required and applied locally out to about Q6H to keep acute inflammation managed to tolerable. High level IP has slowed me. is mental, physical, overall, gut IP. I am ok. I have always said I am ok. back at the recipe books. Emotionally up and down. wanting a life is down. and hungry for life is up.
Friday 18th September
Yesterday I was able to extend the Benicar 5mg s/l out to 4H and not have to use it locally as the acute inflammation is settling. Still high level overall IP and body pain if going out further than 4H. Today is Day 10 past the Z dose. I may not have to repeat Z if symptoms stay ok - I am managing with the Benicar and assessing the best course. heels needing a lot of attention. applying small amount of Benicar in the cream. hope they will settle too. some sinus drainage. was able to re-search and type some more of my recipes. Swimming is going well.
Friday night: Have had to take the Benicar 5mg s/l 3H or before + use locally. is Day 10 after Z 30mg dose #1: The IP is really getting into it. I havent really experienced anything like it when I have been taking the Z with mino or any of the mino /z combinations. I dont think I will be able to stop the Z.. too high level symptoms. Have prepared a dose of 15mg to take if necessary to hopefully have a better next cycle.
Saturday 19th Sept:
4am: Last night I took some panadol and 1 Quercetin 250mg and the IP is no longer intolerable. I woke Q3H needing the Benicar.
Kept managing any waves of intolerable IP with Benicar 5mg s/l + some locally applied + Q3H. panadol and Quercetin 250mg Q6H. Swimming went well- still need help dressing. usual afternoon nap. recipes. visitor staying for weekend.
Antibiotics:
August 09 I tried Mino and had to keep increasing after 3 doses at each level when the palliation would run out. got to 100mg and decided I would try Zith alone this time. It was a different experience to taking with mino. far better. and I was able to see that the mino has been a problem for me as well. It was a problem at the very start of MP. It is no wonder that I have had trouble trying to do all the combinations with mino all these years.
19th Sept: Day 11 since dose #1 of Zith 30mg: no mino. and I am hoping that I dont have to take another dose of Z to modulate because it did give me more IP than I want.
-I have never been able to do a 10 day Z cycle. when I took any Zith combination with mino, the cycle would have to be 7 days or even down to 5 days cos I couldnt stand the IP any longer, and, always having to increase and increase.
-The Zith alone now has given me a different experience - like it should have been.
It is good to reach a time of experimentation outside of the box to find these things out.
I am using panadol and quercetin when it gets too hot to handle at the moment.
I wont take another dose of Z unless I need to to palliate. Only if I cannot manage the IP without taking another Z dose, I plan to take 15mg looking for the balance of palliation, yet less IP. 1 day at a time following the lead of the IP, doing whatever I need to do to manage.
Monday 21st September
Day 13 since #1 dose 30mg Zith. very interesting for me to observe this process of Z with no mino. It is looking like I can stop the Z with no problems when I am not taking Mino with it.
When the IP level is too high, I have taken panadol + 250mg Quercetin to manage.
Benicar: As the acute inflammation is resolving, the need for the Benicar has decreased. I am experimenting with local application, and dosing, of the Benicar to see how, and how often is required to keep the acute inflammation managed while keeping the IP tolerable.
...........
Other News: After a long time since, I have just had phone contact with an MP friend who commented how much I have improved per phone. no constant cough and throat clearing, a stronger voice and stamina.
Also, comments from another friend have made me realise that while I know I am improving and I live daily with the hope of further recovery, I cannot yet clearly envisage "we're gonna dance on the disco floor of a cruise ship. ie MP cruise." : )
..........
Wednesday 23rd September
Visitors to stay. At first I felt like I'd been punched in the stomach but I am ok again.
Meds: Benicar 5mg orally Q5H + I am using 5mg locally TID just to make sure of the acute inflammation at this stage.
panadol for body pain.
Notes: -I have finished going thru all the recipes & typing those I want.
-I was able to sort some files on my computer - something I havent been able to manage up till now.
-Since I am back on meds, I am more sleepy during the day, so, at this stage, after the pool I need to sleep/rest for hours; do some on the computer & not much else.
Thursday 24th September
Meds: I found that using the Beni 5mg S/L gave me more palliation and less IP than taking orally. so I used 5mg Q3H S/L + locally for a few days till the acute inflammation settled and now am able to manage with 5mg Q5H orally. + panadol x 2 and 1 Quercetin approx once per day.
News: Visitor after 18 months, says can see I have improved.
emotionally I can be fragile at times but quick to stabilise.
____________________
Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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Sunbeam
Member in Phase 2
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| Location: | Perth, Australia |
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Posted: Mon Sep 21st, 2009 08:02 |
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Thank you Barb for you informative report. It certainly complicated but I am so happy you are managing to find a way to manage your IP and enjoy life a little,
Take care, 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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Deedee
Member in Phase 2
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Posted: Fri Sep 25th, 2009 03:58 |
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| Dancing on an MP cruise...love that image. You give us all courage.
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Sarc in lymph nodes. D15. Modified Ph II; Mino/Clindy; Benicar 4X/day. Lipids high. 7/07 check-up: Normal PFTs/CXR improved; Quecentin/guaifensin if lymph nodes hurt. Began MP 8/08
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Aussie Barb
Research Team
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Posted: Fri Sep 25th, 2009 04:45 |
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Thank You All ..
Friday 25th September.
History:
Start MP August 04
No Antibiotics from 8Feb09 to 7Aug09.
Mino 7Aug09 to 8Sept09 stopped
Benicar weaning started Oct08: details here. Aussie Barb
No regular Benicar from 24May09 to 10Sept09
Present meds:
Antibiotics: Exploring. Not taken since 8Sept09 > Z 30mg dose #1 to try to relieve intolerable inflammation. today is day 17. Will take another dose if and when I need to to keep symptoms tolerable. If I do need to, I will take the lower dose, 15mg, to try to achieve the palliation with less IP. It is amazing what small doses can do.
Benicar: restart 10Sept09: Benicar 5mg orally Q5H + 5mg locally x 2 or 3/day seems to be the best at this point.
This gives managable IP and is palliating acute inflammation. (managable doesnt necessarily mean tolerable) is not considered to be MP. I am doing what I can to keep all tolerable as I work towards recovery. I "follow the herx". ie I do whatever I need to do re adjusting my meds - to keep all tolerable to keep myself safe and to have a reasonable life..
ie: 26Sept: dose #1 15mg Z only + Benicar 5mg Q4 to 5H + locally.
Day 10: 5thOct: cycle #2 15mg Z only + Benicar 5mg Q4 to 5H + locally.
Other meds: 2 panadol prn for muscle soreness. approx 4 per day.
-Chelated Magnesium 500mg x 1 a day for slight muscle spasming and muscle soreness. End Sept: mag has been stopped now with no ill effect.
-Quercetin 250mg x 1 /day
no light avoidance. some increase in eye sensitivity at times.
-Indoor Pool: 11+ months x 7 days a week at the pool: 45 minutes walking and backstroke + 20 minutes exercise. I enjoy the freedom to move in the water - pace governed by chest pressure. DH walks by my side and takes my hands to help me to my feet at the end of each lap.
Caution to starters: remembering that I was much slower and less capable than this when I started.
-on land: more sleeping, resting. computer. walk with wheeled walker in grocery once. garden, outdoors stopped since meds restarted- too tired. I have been able to contribute a little towards some simple cooking.
-dependent on home aids and assistance to dress etc. unable to drive. unable to travel more than 20 minutes.
-26th Sept: Started with timed 1 minute of body movement. Did this 4 times spaced throughout the day.
add note: 2 days of this caused an increase to intolerable symptoms. stopped.
-eyesight is blurry, seems to be more so.
-eyes are still bloodshot and glassy looking
-constant wetness in ears makes white crust.
-hair still suffering some.
-back, hips, flank area painful. using meds.
-R hip: can feel muscles pulling in R hip and groin when walking anything past around 20 metres(yards) on land only.
-knees sore today
-spot lesions
-hands tight and sore to flex. swelling is decreased from what it was.
-continues painful to stand or to sit arms extended doing anything.
-fatigue. sleepy during the day, sleep/rest for hours after the pool; do some on the computer & not much else.
-improvement in being able to reach my hands behind my back. I could hardly touch fingers at first. I do it as an exercise daily at the pool and can now reach hand along hand
-neuropathy and dryness in soles. heel cracks improving. rubbing Benicar in cream in daily.
-L underarm inflammation resolving with Benicar
-acute inflammation sensitive area managed with local Benicar 5mg BID or TID.
-I have been able to contribute a little towards some simple cooking. we bought a few extra ingredients at the store to try some different recipes.
-still a high level of IP
best wishes to all, Barb ...
Saturday 26th September
#1 Z 30mg 18 days since: It seems the time has arrived to take the Z at the 15mg level to see how that goes. Knees are weaker, hurting, skin is itching, feet drying out more again, leg muscles close to cramping, ears itching, sinus draining, sudden choking/coughing etc. The Benicar by itself is not holding. Body generally starts to feel in all different areas like it needs some support to function best. IP is preferable to these downhill symptoms.
-Weight slightly increased despite the puff generally decreasing very slowly. (weight increase with IP)
3am: cycle 1, Z 15mg, Day 1. IP started quickly. vibrating in first hour. body ache.
update 12MD Benicar as needed: 5mg schedule increased to Q4H with 5mg S/L in middle @ 2H. sleeping resting.
No swimming today so, 4 times throughout the day, I set the timer for 1 minute only, and moved to music. After the 4 times, symptoms started to increase and my bottom sore, so that was it for the day. total: 4 minutes spread thru the day.
I am pleased that I could see when enough was enough. and I am looking forward to improvement in time and schedule of this activity.
Sunday 27th September
I did the 1 minute of movement x 4 times again throughout today. Symptoms increased to uncomfortable tonight. I have noticed that when I overdo it, no amount of any med is enough to settle the IP in the affected area.
Monday 28th September
Day 3. Needing Benicar more often today to keep on top of overdo symptoms. Q3H sometimes sooner. so, didnt do any exercise today.
Tuesday 29th
Day 4. Cannot do anymore "1 minute exercise" for now. still symptomatic. Havent been to pool for 3 days due to Family circs. went to pool- come to the exercise part and it hurt then and after- lower back to R groin area. took Benicar & panadol.
Wednesday 30th
Day 5. -A record has been made. I slept 6H.
-As we know, Anything can show as IP. dry feet wax & wane with other symptoms helped by taking the Benicar. Continuing Benicar 5mg orally Q3 to 5H depending on need, + 5mg locally sensitive area as needed 2 or 3 times per day. I use 5mg S/L if needed, less than once per day. + Panadol for pain.
-I have been sorting files on my computer. something I have not been capable of for years. It is an interesting journal in itself. I was very sick preMP for sure. It certainly shows the worth of keeping records.
-one spot of pain in L top of back from sitting. same spot I had as a child sitting.
-itchy, itchy skin, scalp. dry feet.
-a small scar from 30 years ago has shown itself again today. must be it's turn now.
-went to a shop with walker.
Thursday 1st October
Day 6. Body aching. eyes very blurry. wearing sunglasses to do my backstroke now the light is so bright thru the skylights at the pool. Continuing Benicar 5mg and panadol. went to a shop with walker.
Friday 2nd
Day 7. Woke 2hourly thru the night. up at 4am. I wake with a Very dry mouth. back aches to stand always. painful spot on L top of back continues to niggle. body pain. writing this reminds me to take panadol. feet neuropathy + dry.
-Last couple days stopped magnesium with none of the usual effects of headache or cramps. so far so good.
My swimming is improving. I do 2 laps of practicing forward (freestyle) to finish each day. it still takes a lot of effort for me yet, but is getting easier.
Saturday 3rd
Day 8. A lot of body pain thru the night. probably part from the pool work and part IP. panadol + Benicar.
Sunday 4th
Day 9. visitors staying. no pool.
Monday 5th
Day 10. IP increasing too much. ears sore & dry, RUQ humming, emotional fragility> and extra Benicar no help >>>
4pm becomes cycle #2: 15mg Z only + Benicar 5mg Q4 to 5H + locally
Tuesday 6th
Cycle 2, Day 1: Visitors gone. exhausted. wired, cant rest. going to pool later will help.
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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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laura1814
Member in Phase 3
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Posted: Thu Oct 1st, 2009 23:23 |
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Barb, I have not been around for a while, but I wondered about you. So glad to know that you are working towards getting back on the protocol, and making progress. It is inspiring to learn that you haven't given up. We all have so much to be grateful for.
Best wishes. xox
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CFS, EBV, PCOS, POF, TMJ, hypoglycemia, hyperlipidemia, MP Ph1 1/08, Ph2 4/08, Ph3 1/09; enzymes, & ranitidine PRN, NoIRs, low lux home, limited outings, covered up, 1,25D=37, 25D=9.
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Aussie Barb
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Posted: Tue Oct 6th, 2009 08:47 |
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Thank You All ..
Tuesday 6th October.
History: in post above
Start MP August 04
Present meds:
Antibiotics: Cycle 2, 15mg Zith only, once every 10 days
Benicar: Benicar 5mg orally Q4 to 5H + 5mg locally x 2 or 3 per day.
Other meds: 2 panadol prn for pain, muscle soreness. 4 to 6 per day.
Skin: no light avoidance.
Eyes: some increase in eye sensitivity at times. blurry. sunglasses on in the car & to do backstroke.
-Indoor Pool: 12 months of 7 days a week at the pool: 45 minutes walking and backstroke + 20 minutes exercise. swimming continues to improve. I can feel awful to go and yet always be ok when I get going in the water.
-on land: as per post above.
I wake with pain thru the night and sit up to change position for a while & then go back to bed.
Last cycle, Day 10 symptoms increased to intolerable and extra Benicar didnt help. Took next Z dose and all eventually settled as long as I keep taking the Benicar 5mg as needed. around 3 to 4H. managing IP with the meds.
The Visitors say I am looking better than last time when they were here 4.8 years ago. 2 years ago I got knocked back even further than that. That was when I went to hospital. I am having to work hard on my rehabilitation. I am thankful for all support and that I have found a way to manage.
best wishes to all, Barb ...
Thursday 8th October
Day 3. Not sure why.. maybe extra effort.. high level IP. pain & swelling R ear. gut. fatigue. swimming is going well.
Friday 9th October
Day 4. extending the Benicar schedule back out to Q6H has lessened the IP. ear is settling. acute inflammation area greatly improved today. has taken a month of using the Benicar to settle. have to use not too much, not too little, just right. plus take Z to keep all managed.
9pm. IP dropped right back today & able to extend Benicar out past 6H. swimming & rest.
Saturday 10th
Day 5. a little emotional fragility early. just a little soreness left in the R ear. staying at the pool almost 1.5H last few days.
-went to 1 shop. R groin when walking. rest at home.
-plenty of body IP. acute area is fine. Benicar 5mg Q3H this afternoon for RUQ. Panadol.
Sunday 11th
Day 6. bad colic last night, Benicar no help. went to bed-sleep, relief.
Recently, when I wake at around 3am with body pain - have been doing approx 15 minutes of range of motion movements while lying & sitting - spine, neck, arms, shoulders.
spot lesions continue.
neuropathy soles of feet continue.
High level RUQ IP evening.
Monday 12th
Day 7. Benicar Q6H. sticky cough each morning. tried a quercetin this morning to see if it will help along with the usual cough drop. swimming is 6am each weekday now, and later in the day on weekends.
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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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Aussie Barb
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Posted: Fri Oct 9th, 2009 00:50 |
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1 Year of going to the pool! celebrating the improvements.
This is a partial copy / written for the local pool notice board.
Barb's Story: rehabilitation in the water.
I have had Chronic Fatigue Syndrome for 30 years. In 2004 I started MP. I have been trying to regain physical strength & mobilise since a 6+ weeks hospital stay Oct-Dec07.
I would not have been able to do this without the help and support of my husband by my side - getting me there each day - with dressing, travel, getting in and out of the pool and all help. Getting ready is exhausting in itself. I have felt tired to be going, and getting out of the car, to the water, but find that I pick up once I am in the water.
Thursday 9th October, 2008 – 1 year ago, I was able to start going to the pool daily, after having investigated the local pools for suitability re steps etc.
I was excited to be able to go to the indoor pool! When I started I went in a wheelchair to the steps & I was very emotional to be able to actually do it. In 4 years, this was my first real outing that was not to the Dr.
In the beginning, because of hip pain & chest pressure, I started off with short visits, walking slowly & taking breaks.
By January 2009 I was walking in from the car with the wheeled walker & had just started swimming, & staying for an hour each day.
February: started adding a few exercises & stretches.
As well as physical rehabilitation, there is the social aspect. We have met a lot of lovely people.
What I can do & how much I can do is now governed by chest pressure. I am improving all the time. Hip pain in the water is almost non-existent.
When I started I couldn’t lift my arms, couldn’t put my face or chest in the water, couldn’t swim. I had painful wrists & hands, joints, difficulty getting in & out of the car.
Each day I usually do 45 minutes alternate laps of backstroke & walk/paddle + the 15 to 20 minutes of exercise & a couple of laps practice to relearn freestyle.
I love the warm water & the people & I am really happy to have the opportunity to work in the pool to hopefully regain my Life.
So it is, just going along doing what I have to do.. All my efforts each day go into working at the pool to try to get me rehabilitated - working hard.. which I wasnt capable of doing pre MP.. and taking the meds as I can to manage the IP.
Thank you for all support. 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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vda51
Member in Phase 3
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| Location: | Perth, Australia |
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Posted: Fri Oct 9th, 2009 07:21 |
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| Great to hear about your improvement Barb ,from my experience you need to keep working at increasing your stregth and stamina,and as this improves your health does too ,it is a hard grind , but rewarding
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Reiters Syndrome 10yrs 25D=27 1,25D=43/ Crp56.33/ WCC8.7/ lymphocytes 1.2/ BP 91/59 NoIRs/ LIGHT & D AVOID| Beni Mar05 Mino Apr05| FEB O8 25D=6 DEMI 112MG
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Aunt Diana
Moderator
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Posted: Fri Oct 9th, 2009 19:17 |
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| Wonderful news Barb.
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Lyme 1987, neuro cardio fatigue achiness brain fog depression, anxiety. Pacemaker, D.1,25 32; D <5; 12/07 <6, hydrocodone, lorazapam, benedryl, zantac, colase, Noirs, cover-up or avoid sun, house <30lux. Feb 08 Phase 3. 6/08 D <4, D1,25
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marion villa
Member in Phase 3
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Posted: Fri Oct 9th, 2009 21:25 |
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 !!!!!!!!
marion
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Lupus, RA, erythema nosodum, skin ulcers, MP 11/07, voltaren, paracetamol , ,Tylex w/codeine, NoIRs, limited outings covered up,Ph 2 /20 april 2008, 25D<4ng, ph 3/ 22 oct 2008.
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Vicki SA
Member in Phase 3
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Posted: Sat Oct 10th, 2009 01:01 |
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Congrats Barb on your milestone!
The road is clearly still pretty rocky but may it get smoother as you go. 
All the best,
Cheerio Vicki
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ME/CFS 2000, Splenectomy, 8/05 - 1,25D51,25D16.5, Ph1 12/05, Ph3 1/07, Zoton 30mg, 2008 - cover with light r/t Work 3/7, NoIRs, hat, cover well, invis. zinc for outside, low lux home, Sept08 25D - 8
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Aussie Barb
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Posted: Sun Oct 11th, 2009 05:04 |
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For personal reference I am noting here some of the exercises and movements that I do at this time. I make these movements simply to get my muscles & joints moving, flexible. I dont have a manual.
In the water
#1.
Standing - legs apart, arms extended, Star shape. > L arm up, bend to the R, reach R hand down R leg as far as possible 1, 2, 3, 4, 5 times.
R arm up, bend to the L, reach L arm down L leg 1, 2, 3, 4, 5 times
Repeat this for 1 minute. increasing as able.
#2.
Bend down forward to "touch my toes" ... I cannot touch my toes, but the point is to reach as far as I can. This involves taking a breath inbetween before my head goes underwater with each bend forward.
Do this one 20 times. increasing as able.
#3.
Rhythmically reach R arm out & back flat to the middle of the back
then L arm out & back to the middle of the back.
Repeat for a count of 30 times. increasing as able.
Then, legs apart, bend sideways & reach to behind knees.. R side, L side for a count of 30 times.
Repeat for a count of 30 times. increasing as able.
Then bend forwards & reach to inside of knees. R hand to R side, L hand to L side.
Repeat for a count of 30 times. increasing as able.
#4.
Legs bent at knee. Kick leg out and retract back, bending at the knee: Starting with R leg - kick out & back from frontways, clockwise about 7 kicks till kicking at the back, and then kick all the way back to the front again.
Follow same with L leg going anticlockwise & back to the front again.
Do this for 1 minute. increasing as able.
#5.
Stand to balance on L leg
Stand up straight. Extend R leg at 90* angle from hip. To the front. To the R side. To the back. maintaining balance to a count of 5 to start.
Same with L leg to front, L side, back.
Then balance & bend knee, in out, in out, thru the semicircle of each side. back to front, front to back.
Do this for 1 minute. increasing as able.
#6.
Squats.
This involves taking a breath inbetween as my head goes underwater with each squat.
Squat right down as far as I can go, till knees fully bent. then push up to standing. Take a breath & straight back down for next one.
I can manage 24 of these in one go. and am increasing as able.
#7.
Hold arms extended out from the shoulders to the sides, hands cupped. feet maintain contact with the floor of the pool. Turn this way, that way, to put pressure on arms, shoulders, spine.
Do this 50 times or 1 minute. increasing as able.
#8.
Duckdive.
Take a deep breath & dive to retrieve an object from the bottom of the pool. I hold my husband's foot for as long as I can & then come up for air. He counts. at this stage I can stay under for a count of anything from 13 to 17.
I do this 3 or 4 times.
#9.
Swim about 2.5 laps of freestyle 1 lap at a time with a walk inbetween.
#10.
paddle over to the side shelf which is about knee height under the water.
-Hands on shelf & legs extended out lengthways, slowly kick legs (similar to swimming) as a way of stretching body muscles.
-Stand. I lift each leg alternately & touch the shelf with my toes while standing straight on the other leg.
I started off doing this 50 times daily but now do it 100 times.
-Hands on shelf & legs extended out lengthways, slowly kick legs (similar to swimming) as a way of stretching body muscles.
Doing all these takes me about 20 minutes.
Other range of movements: I can do these in the water or out of the water.
Repeat each movement a resonable amount of times. not too many.
While sitting:
-roll neck/head clockwise & anticlockwise.
-Turn head to the R & to the L
-arms extended. roll arms around in a circle forward. then same backward.
-arms extended or on hips: turn body to the Right & then to the Left.
-bend forward as far as I can, & up again.
-Hunch shoulders and roll them forward & then backward.
Many variations of movement to move all joints.
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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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