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Vicki SA
Member in Phase 3
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Posted: Mon Aug 20th, 2007 06:11 |
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MP day 601 (20/8/07)
Benicar 40mg q6-8hr - 27/12/05, Minocycline 100mg 16/3/06
Phase 2 - 13/4/06 to 11/01/07
Phase 3 - 12/01/07
G'day all,
I have been continuing on with the MP and feeling confident in my improvement. I came down with the Flu at the end of July and into August and that has slowed me down. Up 'til then the numbers were all improving. The time I spend resting/horizontal has been steadily dropping and was averaging under 13 hours/day for May and June. Getting the Flu at the end of July ruined that month's average (13.38) and August is a disaster at 17.62 so far  . I am starting to feel back on track now with energy returning in the last few days. With the Flu I had an increase in some very familiar symptoms (body aches, glands up etc) but I never had that toxic feeling of past relapses and actually felt ok as long as I was laying down. It really knocked my energy and endurance though. I kept the abx the same for the last few weeks and resisted raising anything until I felt that I absolutely had to .
At home I am just starting to relax the light restrictions. We now have some natural light coming into the main living area. It is from a window basically facing south and under a verandah, so not direct light. I am in the process of removing the panda film (plastic - black on one side and reflective white on the other) from the windows on the north side and replacing it with blockout curtains. That way the curtains can be opened when I am not around. My family have been very supportive of the cave like house but are keen to return to natural light whenever possible now.
I’m on my way, uh-huh, uh-huh!  
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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Vicki SA
Member in Phase 3
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Posted: Sat Oct 13th, 2007 07:29 |
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MP day 655 (13/10/07)
Benicar 40mg q6-8hr - 27/12/05, Minocycline 100mg 16/3/06
Phase 2 - 13/4/06 to 11/01/07
Phase 3 - 12/01/07
Symptoms. (Varying over the cycle) Generalised muscle pain – spine (burning/wired pain in spine and limbs), upper back/neck, hips, front of shoulders, around knuckles in hands and feet, aching limbs, itchy skin (hips, shins), burning feet, + myoclonus (body jumps) at times. Immune Response – scratchy throat, ears, eyes, armpits, back of knees and elbows.
G'day all,
Things are going along well. I started the new cycle adjusting the abx (1 up and 2 down). It worked well for the long weekend and I had good energy for our trip away. I am really amazed at my energy levels at present. I had the week off after our weekend away and I actually walked the dogs along the beach. It has been so long since I have been able to do this, I had forgotten where to drive to find the entrance to the ‘dog free’ beach. I was driving down the road thinking where am I going?! And then I walked there again a few days later! Over the break I did some much needed organization in my house, caught up with friends and had a couple of jam sessions with guitar, went shopping at places that need a lot of walking. Then when I went back to work, I managed easily! I am really getting a life!
I’m on my way, uh-huh, uh-huh!
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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Vicki SA
Member in Phase 3
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Posted: Sun Dec 16th, 2007 01:59 |
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Party, Party!!
G'day all,
I just had to do a quick post to share my latest milestone. Last night I went to not one, but two house parties! This was after a ‘quiet’ day at home, I used the laptop all morning, played my guitar for an hour or two, took the dogs for a 5 minute walk, hung out washing, then got on with installing programs on my new system on PC and then went out after 8pm and came home about 1am.
Pre MP these sort of social gatherings were really beyond my energy or endurance levels. Even the environment was impossible and I felt overwhelmed just trying to cope with the noise levels etc. Now I find I can generate conversation and actually enjoy the social, despite the usual ‘too loud’ music!
Stay tuned for a proper update as I come up to my 2 year anniversary. I am really getting my life back on the MP.
I’m on my way, uh-huh, uh-huh!
Cheerio Vicki
____________________
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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Vicki SA
Member in Phase 3
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Posted: Thu Dec 27th, 2007 10:18 |
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G’day all,
Today is my 2 year anniversary on the Marshall Protocol. I am going along well in Phase 3 and looking forward to more improvements in 2008! I have added my current improvements to a recap of my progress over the 2 years. I hope this is useful for any considering or starting out on the protocol.
Thanks so much to Professor Trevor Marshall and the volunteers on the Marshall Protocol Website for the wonderful research and support!
I’m on my way, uh huh, uh huh
Cheerio Vicki
Sleep.
MP day 142 (17/05/06) I started to sleep more deeply quite early in the protocol and this has continued. I now get to sleep much quicker and generally sleep pretty well.
Update - MP day 311 (2/11/06)
My sleep continues to be much better. I dream and sleep solidly most of the time. I regularly get around 8 hours/night or more.
Update - MP day 464 (5/4/07)
My sleep improved very early in the protocol. I felt that I generally got to sleep quicker and slept more deeply. In 2005 I recorded 24 nights where I had less than 6 hours sleep/night. In 2006 this figure dropped to 15 nights. The total amount of sleep overall hasn’t changed much, I have been averaging around 8 hours/night for the last few years but the quality is vastly better. I rarely have ‘awake’ bits in the middle of the night now. Lately I wake up in the morning and think to myself – that’s it, I don’t need to sleep anymore!
Update – 2 years on MP (27/12/07)
My sleep is now very normal, with good quality sleep and few wake ups during the night. If I do wake up, I rarely have trouble falling straight back to sleep. Dreaming is also regular but I don’t move in my sleep. This is something I seem to have lost along the way and I wake up to turn over.
2007 – Yearly average 7.68 hours/night with only 13 nights under 6 hours sleep for the year.
Muscle Pain.
MP day 142 (17/05/06) I feel that this is gradually dropping and I can imagine and even hope for a life without this symptom! At first herxing would produce muscle pain similar to overdoing it or a flare of symptoms but now it is more moderate.
Everyday Pain Relief 2 Paracetamol, 2 Ibuprofen, 2 Codeine/Paracetamol, 2 SR Paracetamol
Update - MP day 194 (8/07/06)
My pain levels are lower and I have ‘dropped’ 2 Ibuprofen tablets/day. I hope this means that I am going at about the correct pace with the cycles and increasing the abx.
Update - MP day 311 (2/11/06)
My pain levels are dropping. When I started the MP, each day I regularly took 2 paracetamol, 2 codeine/paracetamol, 2 SR paracetamol plus magnesium supplements and often 2 ibruprofen. I weaned off the magnesium supplements in Phase 1 (I think) and now the regular amount is just the 2 codeine/paracetamol, 2 SR paracetamol. I haven’t taken the Ibruprofen for ages and now am finding, in the afternoon, I don’t think to take the 2 paracetamol that I used to take at about 2 or 3pm. I generally don’t take pain relief until about 5 or 6pm now. I had stopped the 2 paracetamol on recovery days but usually took them on work days, but lately I am finding that I am forgetting them on work days as well.
Update - MP day 377 (6/1/07)
My pain levels are still much lower than pre-MP! For years I have had my options for pain relief within reach of my bed. It is still there but I can't remember the last time I went fishing (usually in the middle of the night and not able to sleep) for something to take! I have completely lost touch with the late night ABC radio announcers who were once so familiar to me.
Update - MP day 438 (10/3/07)
My pain levels continue to drop. Most days I only take 4 paracetamol now.
Update - MP day 464 (5/4/07)
My pain levels have dropped significantly, I am able to be more active, my brain fog is almost zero and I generally feel better most of the time!
Update – 2 years on MP (27/12/07)
Any pain I have now is depending on IP or herx. I really don’t have pain free days but I certainly have light pain days and rarely take any more than 4 Paracetamol/day. I take 2 about 4pm and 2 as I settle for sleep. The sore bits are usually the muscles that are holding me up, so Buttock muscles, upper back and shoulders. The movement of my arms or shoulders isn’t limited now and it feels sore mainly at the ends of the muscles or tendons. Sometimes in the middle of the cycle, the middle of my back is quite weary. At times, I still get Myoclonus or body jumps as I settle for sleep but not on a regular basis and rarely for more than one or two nights in a row. I notice all around the knuckles in my hands and feet at times and I feel the abx is really getting in deep there.
Post Exertional Malaise
MP day 142 (17/05/06) I feel that I get fewer consequences from activity now and they don’t last as long. I just don’t seem to have a week of extra symptoms after overdoing it!
Update - MP day 311 (2/11/06)
I definitely recover quicker after any activity and generally have less consequences.
Update - MP day 525 (5/6/07)
I’m back after 3 weeks away travelling (total 5000+kms across Australia). I set the MP meds to keep the IP as low as possible and I actually got it pretty right this time! We went to the annual gathering of Ulysses Club members in Coffs Harbour on the coast of N.S.W. There were 6000+ Ulyssians there, all ready for a good social. I rode my Yamaha Diversion 900 with Hubby on his Yamaha FJR 1300 pulling the trailer. After 17 months on the MP, I recover so much quicker now from any exertion and was really pleased with what I was able to do each day. I didn’t need to have any complete rest days, to catch up and rode the bike every day for a week of travelling on the way over and 5 days coming back (the shorter and less scenic way). I wasn’t able to keep up with ‘normals’ as such but definitely did more than I have been able to manage in the past with ME/CFS. I needed about 12½ hours/day horizontal. The weather is cooler at this time of the year and so I stayed well covered and wore the invisible zinc sunscreen, hat, NoIRs etc but didn’t limit my time outdoors. We arrived home on the Friday and then spent the weekend catching up with friends and telling tales of our travels , doing the laundry etc. On the following Monday, I went back to work. I work 3 days a week and in the past (after any trip) have needed a week home to recover before going back to work. This time after a busy day at work, I was a bit weary, stiff and sore and the circles under my eyes were darker but I managed well!
Update – 2 years on MP (27/12/07)
I still need to pace my activities but recover well and generally don’t have a lot of consequences to deal with after activity. I haven’t embarked on an exercise program yet but I have extended what I am prepared to try now. I have attempted things around the house that have waited for years for some attention. It is so nice to be able to do a bit of reorganisation. One day I pulled my PC, speakers, printer and router/modem to bits, reorganised all the wires and wiped it all down, including the table! In the past, just leaning over the table and trying to do things with my arms away from my body would have done me in very quickly! Another day, I not only washed the car, I vacuumed all the inside and the boot as well! When I started the MP I would go to work one day and then the next would be a recovery day with lots of resting and very limited activity. On the weekends I could only plan one social activity, otherwise, I would pay for the extra activity all week. Now I can do some activity every day and get away with it.
Orthostatic Intolerance
MP day 311 (2/11/06)
Another thing that I have forgotten to mention is about Orthostatic Intolerance. I am able to stand for much longer now before I need to sit. Pre MP I would quickly be looking around for a chair as I soon felt so bad from standing.
Update – 2 years on MP (27/12/07)
I still have some Orthostatic Intolerance but I can stand for much longer now. I have some escalation of symptoms when I am standing but there isn’t the urgent need to sit down anymore. The normal queues at the local shops aren’t really a problem but I wouldn’t stand talking at a party like other people do.
Energy
MP day 142 (17/05/06) I feel this is improving and I am getting big ideas of things to do! This hasn’t translated into ‘much’ at present LOL but I did reorganize the camping gear and can now load and unload the dishwasher.
Update - MP day 311 (2/11/06)
I am generally more active when I am up and now regularly load the dishwasher and have even done some reorganising in the house. Some of this (pantry, camping gear) has been waiting for years, for me to feel up to tackling it! I have also played my guitar more and the best bit – on the whole I have felt better!
Update - MP day 388 (18/01/07)
The other day I went to my support group (2 hours) then onto the Chiropractor and went to see a friend and chatted enthusiastically. I used to do something similar pre MP but then it was an extremely tiring day. When I did it this week I had actually tidied for my cleaner in the morning, driven to the PO to get the mail and then after I got home I watched something with my son and stayed up for tea and never went to bed until 9! Yeah I was weary the next day but bounced back the day after.
Update - MP day 438 (10/3/07)
My average time spent resting/horizontal for February was just under 13 hours/day. It is so good to see that figure dropping as well as being more active! I am not attempting to ‘exercise’ apart from very occasional 5 minute walks with the dogs and the usual food shopping trips.
Update - MP day 464 (5/4/07)
My pain levels have dropped significantly, I am able to be more active, my brain fog is almost zero and I generally feel better most of the time!
Update - MP day 719 (16/12/07)
Party, Party!! 
I just had to do a quick post to share my latest milestone. Last night I went to not one, but two house parties! This was after a ‘quiet’ day at home, I used the laptop all morning, played my guitar for an hour or two, took the dogs for a 5 minute walk, hung out washing, then got on with installing programs on my new system on PC and then went out after 8pm and came home about 1am.
Pre MP these sort of social gatherings were really beyond my energy or endurance levels. Even the environment was impossible and I felt overwhelmed just trying to cope with the noise levels etc. Now I find I can generate conversation and actually enjoy the social, despite the usual ‘too loud’ music!
Update – 2 years on MP (27/12/07)
I am amazed at what I can do in one day now. The really amazing days tend to happen at the end of the cycle but all my days are more active now. At times in the past, I really dreaded ‘time off’ at home because I couldn’t do the things I wanted to do anyway and I didn’t magically feel better either. Now I can enjoy a break from work and get out and about and have a social time.
Brainfog.
MP day 142 (17/05/06) My mind is getting clearer and I am having better conversations and finding it much easier to connect to people. I have always been a writer, (personal journals and in the past club newsletters etc) and lately have embarked on some song writing. Early stages but it is so nice to have the inspiration and capability to start on something new!
Update - MP day 311 (2/11/06)
I guess I still do have some brainfog at times but not a lot. I generally feel clearer most of the time.
Update - MP day 438 (10/3/07)
The brain is much better and the ‘foggy’ bits are definitely becoming uncommon now.
Update – 2 years on MP (27/12/07)
After 2 years on the MP, I would say that any episodes of brainfog that I have are comparable to the occasional ‘vagueness’ that any normal person has.
Drooped right eye.
MP day 142 (17/05/06) I am not sure where this fits into things but it is now gone and my eyes are evenly open. I think this is a significant improvement.
Racing heart beat.
MP day 142 (17/05/06) This seems to be happening less often.
Update - MP day 311 (2/11/06)
I have rarely had this now. I can’t actually think of the last time it happened although at times I have felt my heart (like it is moving, odd beat perhaps) and I still get the blood zinging in my ears when I rest, sometimes for a good hour.
Update – 2 years on MP (27/12/07)
I can’t remember the last time I had the racing heart beat. If I have had a busy day, I will still get the ‘blood zinging in my ears’ when I lay down. The heart still seems to be playing catch up at times.
Medication & Supplements.
MP day 142 (17/05/06) Before I started the MP I had stopped Vitamin D things like fish oil and multi vitamins, and things like folate etc. and since I have started I have gradually stopped things. I have weaned the DHEA, Transfer Factor and stopped the zinc supplement. Previous to the MP I struggled to cope without either the Transfer Factor or DHEA.
Update - MP day 311 (2/11/06)
The only non MP medications I take are 10mg Endep (sleep, leg pain) and Zoton (gastric reflux, proton pump inhibitor) and pain relief. Pre MP I took CSM, Guaifenisen, DHEA, Transfer Factor, Folate, Fish Oil, Magnesium, Zinc, Multi vitamins, Endep and Zoton.
Update – 2 years on MP (27/12/07)
The only non MP medications I take are 10mg Endep (sleep, leg pain) and Zoton 30mg (gastric reflux, proton pump inhibitor) and pain relief (4 paracetamol/day). I don’t feel ready to reduce any of this at this stage.
Working.
MP day 142 (17/05/06) I work 3 days a week and have only missed 2 days since I started the MP.
Update - MP day 311 (2/11/06)
I continue to work 3 days a week and I have taken very minimal sick leave while on the MP.
Update – 2 years on MP (27/12/07)
I have worked 3 days a week before and during the MP. I have taken minimal sick leave due to IP/herxing. In July/August this year I had the Flu for the first time in my life and I had 2 weeks off on sick leave and then went back for ½ days the next week. After that I was still lacking in endurance but managed my full hours. This is the only ‘relapse’ I have had since commencing the MP. Because my endurance is now so much better, I am actually able to work extra hours and have TOIL (time off in lieu) later when it suits me! Pre-MP I struggled at times to make the day out and I took sick leave (in hours) so that I could finish earlier in the day.
Rest/Horizontal Time.
MP day 142 (17/05/06) I have been resting more in Phase 1 and this seems to have changed just recently and I am not resting so much at present. This might be short lived ! The time spent horizontal for January to April was averaging between 15 & 15.5 hours/day. The yearly average for 2005 was 14.24 hours/day.
Update - MP day 311 (2/11/06)
The time I spend horizontal has consistently been around 14 hours/day for the last few months. In Phase 1 for January to April it was increased to 15 – 15.5 hours/day.
Update - MP day 402 (2/2/07)
Things that have been slowly improving over the year are getting very noticeable now. The average time I spent resting/horizontal in January 2007 was 13.06 hrs/day. The best monthly average for 2006 was 13.75 (Dec) and January 2006 (in Phase 1) was 15.05 hrs/day. I never feel that I can manufacture a better average because if I start the day earlier, I just conk out earlier  ! Or if I overdo it one day then I need to catch up the next. I am very pleased that this figure continues to drop!
Update - MP day 438 (10/3/07)
My average time spent resting/horizontal for February was just under 13 hours/day. It is so good to see that figure dropping as well as being more active!
Update - MP day 464 (5/4/07)
Just a quick update! I have been updating my Health Records and it is good to realise some positive trends. Lots of things are improving and I am happy to say that my rest/horizontal hours (average) has been consistently around 13 hours/day all this year. Jan – 13.05, Feb – 12.97, Mar – 13.05. My average time pre-MP was 2004 - 14.17, 2005 - 14.24. In Phase 1 of the MP it went up for the first 3 months, Jan 06 – 15.05, Feb – 15.58, Mar – 15.50, then started dropping in Apr – 14.95, May – 13.95, Jun – 14.66, Jul – 14.06, Aug – 14.47, Sep – 14.23, Oct – 14.16, Nov – 13.95, Dec – 13.75.
Update - MP day 601 (20/8/07)
I have been continuing on with the MP and feeling confident in my improvement. I came down with the Flu at the end of July and into August and that has slowed me down. Up 'til then the numbers were all improving. The time I spend resting/horizontal has been steadily dropping and was averaging under 13 hours/day for May and June. Getting the Flu at the end of July ruined that month's average (13.38) and August is a disaster at 17.62 so far  . I am starting to feel back on track now with energy returning in the last few days . With the Flu I had an increase in some very familiar symptoms (body aches, glands up etc) but I never had that toxic feeling of past relapses and actually felt ok as long as I was laying down. It really knocked my energy and endurance though. I kept the abx the same for the last few weeks and resisted raising anything until I felt that I absolutely had to .
Update – 2 years on MP (27/12/07)
The time I spend resting has continued to drop with the yearly average likely to come out as 12.97 hours/day. Most of 2007 has been around 13 hours/day or lower apart from when I had the Flu in July/August. January – 13.06, February – 12.97, March – 13.06, April – 13.28, May – 12.5, June – 12.78, July – 13.38, August – 15.96, September – 12.69, October – 12.03, November – 12.19, December – 11.77. As you can see, overall it has been dropping as the year has progressed.
Potassium Levels
MP day 142 (17/05/06) I have had problems with retaining potassium and it got dangerously high at the three month mark. I took a diuretic for a few days and my potassium levels normalized. I am avoiding potassium rich foods and my GP is monitoring it now and I will have a blood test to check on it again at the end of May.
Update - MP day 179 (23/06/06)
At the end of May I had some blood tests and my GP was happy with all the results. My potassium has returned to normal (after a further 2 months since I had the high result) and it appears that my body has adjusted to the Benicar. I have also been avoiding foods with high potassium (tomato, potatoes, banana etc) and so now I am experimenting with occasional exposure to these foods. I will have my potassium levels tested again at the end of July to check that my potassium levels remain normal.
Update – 2 years on MP (27/12/07)
My GP has continued to check my potassium levels after I had a ‘too high’ reading at the end of Phase 1. I adjusted my diet to avoid potassium rich foods and also added a bit of salt to my food and had no more worrying figures. Now I am not so careful about avoiding all of those foods and just add some salt to them.
Herxheimer symptoms/Immunopathology
MP day 142 (17/05/06) Herxheimer symptoms have, on the whole, been similar to overdoing it or a flare of symptoms. So for me, a lot of it has been ‘the run over by the bus’ feeling where my whole spine (and all the bits in between) are sore as well as muscles all over, burning feet etc as well as a lack of endurance. Other things have been significant dips in mood but these have mostly been fairly short lived, a day or two at most. I have also had changes in my eyes and they have been very dry and I was unable to wear my contact lenses. I am wearing them again now and that has just happened in the last week. Nothing I have experienced so far had been as bad as the illness itself and I feel much more in control of what is happening as I choose to increase or decrease the abx and also have options to moderate symptoms if they are too strong.
Update - MP day 179 (23/06/06)
I am progressing along ok in Phase 2.
I made a cautious start with half the recommended dose of the 2nd abx Z and dropped the Minocycline to 50mg to start. I built the Mino back up to 100mg over 3 cycles of the Z. Since then I have done 2 cycles at each ½ level of the Z and haven’t dropped the Mino for the transitions. I have found the herxing different with the Z. I guess it is more obvious with the Mino alone and in Phase 1 the shorter cycles make the changes (from stronger herxing to milder herxing) easier to spot. For me, I feel that the Z is getting in deeper and I feel more ‘under the weather’ with the herxing than having obvious symptoms to state. At times I find myself writing ‘lack of endurance’ rather than specific symptoms. I wouldn’t describe the herxing as worse, just on a different level. I feel like it is ‘getting in’ more and remain very hopeful that my health is slowly improving. I haven’t been terribly confident to make the decision to go up a level with the Z but so far my decisions have proved to be correct and I feel that I have been progressing reasonably slowly (for me, YMMV) and after a couple of months now, I feel that I am starting to get the hang of it Update – MP day 194 (8/07/06) I am so encouraged! The herxing seems much lower this cycle and I am ‘popping’ out into feeling so much better. It is amazing to have things re-emerging, like personality, conversation skills, energy and enthusiasm and odd things like neater handwriting . I feel like I am regaining some strength in my muscles. It is weird though because it is all so subtle but it isn’t just me noticing these things now. My husband is convinced of my improvement and I had a work colleague comment that my quicker recovery rate is noticeable! My pain levels are lower and I have ‘dropped’ 2 Ibuprofen tablets/day. I hope this means that I am going at about the correct pace with the cycles and increasing the abx. At the end of this Z cycle, I will be half way to the full Z dose in Phase 2.
Update - MP day 377 (6/1/07)
Earlier in the protocol I often described the feeling in my spine as 'run over by the bus' - when you feel like your spine and everything around it has been squashed and is now very sore. Lately my immune response (IP or herxing) seems to be working in the area of my upper back. My left shoulder particularly has been so sore and I have had chiropractic treatments and also have been using my massager regularly. I haven't been able to play my guitar properly for weeks . The symptoms go up and down depending on where I am in the cycle and so this reassures me that it is a healing process rather than a downturn. I really feel that the whole area is loosening up through this, despite how sore it has been. I think most people with Fibromyalgia or muscle pain with CFS will relate to the neck and shoulder area feeling tight!
Update - MP day 438 (10/3/07)
I am going along pretty well in Phase 3. As far as ramping the abx I have possibly been taking it pretty slowly. It is all good! I have been able to be more ‘active’ due to the very tolerable IP or herxing. My shoulder is improving although it fluctuates with the abx. My hips are much better than they have been for years!
Update - MP day 530 (10/6/07)
On our recent trip, I wore my contact lenses everyday! I really haven’t done this since I have been on the MP. My eyes are pretty dry at the end of most days. I think I managed to wear them everyday because I kept the IP pretty low for the trip but still, it is definitely an improvement!
Update – 2 years on MP (27/12/07)
The IP/herxing is still an increase of symptoms although not generally terribly disabling now. When it is stronger I notice things like sleeping a bit more, soreness at the ends of the muscles or tendons (shoulders, knees) or soreness around the joints in my feet or hands. My upper or middle back might be a bit wearier than usual. At times I have muscle spasm in my back and sometimes get myoclonus (body jumps) when I settle for sleep.
This year has seen great improvement in general body soreness and I no longer get the ‘run over by the bus’ feeling where your whole spine (and everything around it) feels squashed, bruised and sore. I feel like the IP has worked through my shoulders and for months I had restricted movement, especially in my left shoulder. That has now passed although I still have a way to go with my shoulders and upper back but it is greatly improved from pre-MP. My Chiropractor can hardly believe how much less tension I have in my neck and shoulders. I have a massage there every month and everything is much less sore than it used to be.
Avoiding the light
MP day 142 (17/05/06) I haven’t found this part of the protocol very easy at times especially over the Christmas period where visitors linger outside and aren’t keen to come into a stuffy house. As I reached the end of Phase 1, I felt that friends particularly, felt that I was indulging in self limiting beliefs and I had to reassert myself. I already had growing confidence that I was on a much better path for improved health. Now, a little further down the track, as people are starting to see my improvement they are accepting the light restrictions better. Now that we are in Winter here, my life is a lot easier although I don’t expect that I will be able to relax the light restrictions for a good while yet. My D tests show good reduction though so that gives me hope for the future.
Update – MP day 179 (23/06/06 I think I am becoming a bit more sensitive to sun exposure or perhaps I am just more aware of the result . Recently I wiped myself out for a couple of days after going for a 5 hour drive. I took all the appropriate precautions and extra Benicar but it wasn’t an experience that I want to repeat ! The 5 hours was just too much for me, especially after the bits of sun I had had in the previous days. Usually I am not a complete cave dweller anyway as I work in an office 3 days a week (with the blinds closed but some reflected light). The travel to work isn’t too bad because I ride a motorbike and am well covered for the trip (40 minutes/day) but I need to visit clients in their homes (to review their needs). That happens 2 or 3 times/week and means the drive to their house (not usually more than 10-15 minutes away) and then of course the time inside their house. I also do a food shopping trip each week (in the car). Most of my time off (4 days/week) is spent in my cave at home and the house is nicely protected for all the rooms. My family is very understanding and keep things closed up whenever I am around. It is a lot easier of course, at this time of the year when the days are short (and cool) for Aussies. I keep hoping that I will have lots of extra energy to get out after dark , but it hasn’t happened much yet.
Update - MP day 525 (5/6/07)
I’m back after 3 weeks away travelling (total 5000+kms across Australia). I set up the MP meds to keep the IP as low as possible and I actually got it pretty right this time! The weather is cooler at this time of the year and so I stayed well covered and wore the invisible zinc sunscreen, hat, NoIRs etc but didn’t limit my time outdoors.
Update - MP day 601 (20/8/07)
At home I am just starting to relax the light restrictions. We now have some natural light coming into the main living area. It is from a window basically facing south and under a verandah, so not direct light. I am in the process of removing the panda film (plastic - black on one side and reflective white on the other) from the windows on the north side and replacing it with blockout curtains. That way the curtains can be opened when I am not around. My family have been very supportive of the cave like house but are keen to return to natural light whenever possible now.
Update – 2 years on MP (27/12/07)
I don’t seem to get an increase in symptoms from going outside now. I still cover well and wear hat, NoIR sunglasses and invisible zinc sunscreen. I don’t really limit my time outside now. I have attended outdoor functions and even been camping in a tent this year. We still keep the house sheltered from any direct sunlight and have some indirect sunlight coming in the main living area now.
Confidence in Improvement
MP day 142 (17/05/06)
I am now on the first level of the 2nd abx in Phase 2 and have growing confidence that the MP is giving me improvements (now!) and that I am moving toward wellness.
Update - MP day 179 (23/06/06)
I am really hopeful though and feel that the MP is working for me, pretty much as expected, and I that I am regaining my health “inch by inch”!
Update - MP day 194 (8/07/06)
I am so encouraged! The herxing seems much lower this cycle and I am ‘popping’ out into feeling so much better. It is amazing to have things re-emerging, like personality, conversation skills, energy and enthusiasm and odd things like neater handwriting . I feel like I am regaining some strength in my muscles. It is weird though because it is all so subtle but it isn’t just me noticing these things now. My husband is convinced of my improvement and I had a work colleague comment that my quicker recovery rate is noticeable!
Update - MP day 525 (5/6/07)
Thanks so much to Dr Marshall and all the great volunteers here on the MP site, especially Aussie Barb. I am getting my life back!
Update - MP day 601 (20/8/07)
I have been continuing on with the MP and feeling confident in my improvement.
Update – 2 years on MP (27/12/07)
The improvement so far and the way I am ‘getting my life back’ make me very confident that the MP is working well for me. I *dare* to hope for more improvements in the coming year and believe I will get back to my pre illness (ME/CFS) levels of activity, despite aging 7 years in the process .
Taking a Break
MP day 311 (2/11/06)
I am going along well in Phase 2. I had a bit of a break in September as I had some holidays. I lowered the abx (and went back down to the June level at ½ way to the full dose of Z) and tried to manufacture lower symptoms for my holiday. We did 2 trips away on the motorbikes and I was out and about more than usual. Thankfully the weather was much cooler then and it was easy with all the bike gear to wear lots of layers, NoIRs, K cream, zinc oxide, hat etc. As for ‘manufacturing’ lower symptoms – I was more or less successful! I think I did better on the 2nd trip than the 1st. I managed ok on both trips and had a good and social time but felt that I coped better after the 2nd. It is great being away and pretending to be a well person but coming home and resting/recovering is always a bit of a let down. After the first trip I was pretty flat and also doing a bit of grieving. I felt that maybe I was on too low a dose of the Z and put it up for the 2nd trip. I still needed to rest and recover but felt better on the higher dose.
Update - MP day 525 (5/6/07)
I’m back after 3 weeks away travelling (total 5000+kms across Australia). I set up the MP meds to keep the IP as low as possible and I actually got it pretty right this time! We went to the annual gathering of Ulysses Club members in Coffs Harbour on the coast of N.S.W. There were 6000+ Ulyssians there, all ready for a good social. I rode my Yamaha Diversion 900 with Hubby on his Yamaha FJR 1300 pulling the trailer. After 17 months on the MP, I recover so much quicker now, from any exertion and was really pleased with what I was able to do each day. I didn’t need to have any complete rest days, to catch up and rode the bike every day for a week of travelling on the way over and 5 days coming back (the shorter and less scenic way). I wasn’t able to keep up with ‘normals’ as such but definitely did more than I have been able to manage in the past with ME/CFS. I needed about 12½ hours/day horizontal. The weather is cooler at this time of the year and so I stayed well covered and wore the invisible zinc sunscreen, hat, NoIRs etc but didn’t limit my time outdoors. We arrived home on the Friday and then spent the weekend catching up with friends and telling tales of our travels , doing the laundry etc. On the following Monday, I went back to work. I work 3 days a week and in the past (after any trip) have needed a week home to recover before going back to work. I am a bit weary, stiff and sore and the circles under my eyes are darker but I managed ok at work on a busy day!
Update - MP day 655 (13/10/07)
Things are going along well. I started the new cycle adjusting the abx (1 up and 2 down). It worked well for the long weekend and I had good energy for our trip away. I am really amazed at my energy levels at present. I had the week off after our weekend away and I actually walked the dogs along the beach. It has been so long since I have been able to do this, I had forgotten where to drive to find the entrance to the ‘dog free’ beach. I was driving down the road thinking where am I going?! And then I walked there again a few days later! Over the break I did some much needed organization in my house, caught up with friends and had a couple of jam sessions with guitar, went shopping at places that need a lot of walking. Then when I went back to work, I managed easily! I am really getting a life!
Update – 2 years on MP (27/12/07)
I have been on a few trips away this year, some for long weekends and one main trip riding my motorbike (sports/tourer) across Australia (5000+km all in all) for 3 weeks. I have adjusted the abx to keep the IP/herxing as low as possible at these times. These trips have been pretty successful and I have been able to join in the social activities much more than pre-MP. It is so nice to not have to disappear as much for recovery time! I haven’t taken a complete break from MP medications and think that for me adjusting the abx is probably the best way to have a break.
Last edited on Thu Dec 27th, 2007 10:24 by Vicki SA
____________________
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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Vicki SA
Member in Phase 3
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Posted: Sat Feb 2nd, 2008 03:45 |
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MP day 767 (02/02/08)
Olmetec 40mg q6-8hr - 27/12/05, Minocycline 100mg 16/3/06
Phase 2 - 13/4/06 to 11/01/07
Phase 3 - 12/01/07
Symptoms. Base - Generalised muscle pain, burning feet, dry eyes, need for Horizontal time – average 12 hours/day, 1 or 2 rests needed most days, most activity - sitting down.
Varying over the cycle – spine (burning/wired pain in spine and limbs), upper back/neck, hips, front of shoulders, knees, around knuckles in hands and feet, aching limbs, + myoclonus (body jumps) at times. Immune Response – scratchy throat, ears, eyes, armpits, back of knees and elbows. All tolerable!
Pain Medication – 4 paracetamol/day, Sun Exposure –average 1-2 hours/day.
G'day all,
We went away for the Australia Day long weekend and I had the Friday off as well. We rode our motorbikes down to the SE (450km). I am still susceptible to heat stroke in temperatures above 30ºC. It got a bit warm (+30ºC) for the last bit of the trip but I coped with a neck cooler and wetting my shirt (underneath summer jacket – letting some air through). When we arrived I rested in the cooler cabin for 2½ hours and was then fine. We had a great weekend socialising and I did a bit of sightseeing on the Sunday (the cooler of the days). We rode home on the Monday and the temperature was ok and I coped fine with just the neck cooler.
I was really pleased with what I was able to do over the weekend and the very minimal consequences/recovery needed after. I did the food shopping on Tuesday and went back to work for a very busy day on the Wednesday. In the past I would have needed a week off to recover after the trip and not been able to join in with as much of the socialising!
My average time horizontal/resting for January 08 was 11.83.
I’m on my way, uh-huh, uh-huh!
Cheerio Vicki
May 2008:
I am finding now after nearly 2½ years on the MP that I have so much more endurance and I recover from any activity so much quicker. The MP isn't a quick fix but it gets to the heart of the problem.
____________________
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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Vicki SA
Member in Phase 3
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Posted: Tue Aug 5th, 2008 04:54 |
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MP day 952 (5/08/2008)
Olmetec 40mg q6-8hr - 27/12/05, Minocycline 100mg 16/3/06
Phase 2 - 13/4/06 to 11/01/07 (up to Z 125mg)
Phase 3 - 12/01/07 - ZMC, 6/1/08 - ZMB
Symptoms. Base - Generalised muscle pain, burning feet, dry eyes, need for Horizontal time – average 12 hours/day, 11.48 hrs/day - July 2008, one rest needed most days (15-60 minutes), most activity - sitting down.
Varying over the cycle – myalgia - upper back/neck, hips, front of shoulders, knees, around knuckles in hands and feet, aching limbs, + myoclonus (body jumps) at times. Immune Response – scratchy throat, ears, eyes, armpits, back of knees and elbows.
Rating 3-4. All tolerable!
Non MP meds - Pain – 4 paracetamol/day, Gastric Reflux - Zoton 40mg
G'day all,
I thought it was time that I posted a general update.
I have been ill with ME/CFS (following glandular fever and viral hepatitis) since 2000. Level of illness - with good family support I was able to continue working part time and have some semblance of a social life. At home I paid a cleaner, struggled to just clear the decks enough for the cleaning and the house became cluttered. My husband took over the cooking. Pre-MP I felt my health and abilities were on a slow decline despite doing my best to pace my activities and get the rest I needed.
I commenced the MP on 27/12/05. My energy and endurance has improved so much since then! Consequences from activity are pretty minimal and short lasting – I actually do most of the recovering overnight! I have increased my activity levels as I have felt able and things that I would have struggled to do are now regular activities. Things like loading the dishwasher, wiping kitchen surfaces, even using some elbow grease to attack something is now possible! In the past trying to do something with vigour or hurrying brought a rapid increase of symptoms and I would be forced to give up. I still have my cleaner and won’t change this until it seems silly to pay someone for something I can easily do myself. I can walk much further and have been doing some gentle bicycling (about 3km) along the bike track. Standing was a problem and I would be looking for a chair very quickly as I felt worse and worse. Now I am amazed at how long I can stand and I look forward to this difficulty resolving completely. I can do the food shopping easily and not have to lay down for 2 hours after. I no longer walk around the supermarket looking like a zombie and leaning on the trolley! My pain levels are very much lower and I don’t get the “run over the bus” (squashed spine) feeling that was so regular. My sleep is pretty normal and I am rarely awake for any length of time during the night. I can socialise with friends regularly and easily have conversations. I don’t consider brain fog as a rateable symptom anymore! I continue to work part time and am able to do things on my days off and not spend them recovering enough to go back to work. At work I can arrive and have conversations immediately whereas before I needed people to give me space and get settled as I recovered from just getting there. I only take one 15 minute rest at work now and rarely lay down when I get home. In the past I would have rested for at least 1 hour as soon as I got home and previous to that I often just went to bed and stayed there! My bed isn’t my ‘office’ now and I am using my laptop in bed less and less as I can easily sit at my computer. The MP isn’t a quick fix but I am getting my life back little by little and really believe that I will get back to full health.
In June/July I had 4 weeks leave from work and went away on holiday. We hired a gypsy caravan pulled by a Clydesdale and spent 5 days wandering along country roads and tracks. I was able to groom the horse twice a day, help with the harnessing and enjoy the travelling and campfires at night. Following that we stayed in the nearby country town and played tourists for 2 days. We travelled home and then went off again a few days later on our motorbikes for a weekend away with our club. I had another 2 weeks off after that pottering around home and visiting friends (and not spent recovering). It is so nice to be able to have a holiday and have the energy and endurance to be able to do things!
Thanks so much to Professor Marshall and the research team.
I’m on my way, uh-huh, uh-huh!
Cheerio Vicki
____________________
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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Vicki SA
Member in Phase 3
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Posted: Fri Dec 26th, 2008 20:43 |
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MP day 3 years! (27/12/2008)
Olmetec 40mg q6-8hr - 27/12/05, Minocycline 100mg 16/3/06
Phase 2 - 13/4/06 to 11/01/07 (up to Z 125mg)
Phase 3 - 12/01/07 - ZMC, 6/1/08 - ZMB
Symptoms. Base - Generalised muscle pain, burning feet, dry eyes,
-need for Horizontal time – average 10.75 - 11.5 hours/day and slowly dropping,
- Dec 2008 – 10.75 hrs/day, one rest needed some days (15-60 minutes), most activity - sitting down.
-Energy generally pretty good now.
Varying over the cycle – myalgia - shoulders, middle back, around knuckles in hands and feet, aching limbs, scratchy throat, ears, eyes, armpits, back of knees and elbows + myoclonus (body jumps) at times.
Rating 2.5 – 3.5. All tolerable!
Non MP meds - Pain – 4 paracetamol/day, Gastric Reflux - Zoton 40mg
Sun Exposure – not limited, hat, NoIRs, well covered, invisible zinc.
G’day all
I am very pleased to post my 3 year update and record my improvements. I will give a recap of the issues and if you are interested you can refer back to the huge recap of the first 2 years that I did last year on 27/12/2007. See:-
http://www.marshallprotocol.com/forum30/6284-2.html
I’m on my way, uh-huh, uh-huh!
Cheerio Vicki
Sleep Sleep has been pretty normal since 2007. I get to sleep pretty quickly now and I am rarely awake for any length of time during the night. Waking up during the night is much less frequent now. This year I have only 21 nights with under 6 hours sleep and none under 4. Yearly Average 7.6 hours/night.
Muscle pain My pain levels are pretty low now. I rate them at about a 2-3. Pain is still there but it isn’t an overriding issue. I can fail to notice it most of the time. I had regular monthly massages for years but ceased them by June this year and have rarely even used my massager since. I still get myoclonus (body jumps) at times as I settle for sleep.
Post Exertional Malaise I don’t have significant post exertional malaise now from my current activity levels. On the whole, I am weary by the end of the day and recover over night. Activity that is more physical or aerobic would be of short duration and still needs to be ‘paced’ in.
Orthostatic Intolerance I still have this symptom mildly but I can stand around talking now. I am probably fairly comfortable standing for about half an hour. Queues are no longer a problem.
Energy My energy is good and continues to improve! I am able to be so much more active. I can do things everyday and recovery time is pretty minimal. I recover overnight and continue on the next day. In the past any activity had to be factored into the ‘pacing’ and the number of outings was minimal. Now I can manage two or three in the same day!
My fitness levels must be improving with the extra activity. I can easily do household tasks like tidying, loading and unloading the dishwasher, laundry, preparing meals etc. Pre-MP most of these activities produced such consequences that I only attempted them on rare occasions.
This year I have repaired my bicycle and can ride along the bike track - at little dog speed . I even did one ride up the hill to the deli (4km). I am building up my peddling ability by riding my Zbox bicycle (moped with engine) , you peddle it to get going and when you slow down for crossings and corners.
I am able to walk so much more now and find walking on level ground is pretty easy now. Walking up hill still slows my pace and increases symptoms (legs get heavy and recovery time sitting down needed after).
Highlights for the year -
Jan – away on the motorbikes (travelling in the heat!),
winter holiday away in a gypsy caravan and able to groom the horse and stay up for the campfires,
Sept – away on the motorbikes and camping with friends and lots of socialising,
Oct – state gathering for Ulysses club with lots of socialising, 3 test rides and coordinator for the hall set up and clean up for the weekend, another weekend at the local Folk Festival enjoying entertainment and attended 6 x hour long workshops!,
Nov – went to our magnificent Christmas Pageant!
In 2009 I hope to be able to increase my fitness levels with more activity and aim for aerobic exercise in the longer term.
Brainfog By 2007 I felt that I had so little brainfog that it was comparable to occasional vagueness that any normal person would get.
Racing Heart Beat I don’t think that I have had this symptom at all this year and last year I said I couldn’t remember the last time. Sometimes, when I lay down to rest I notice that I have the blood ‘zinging’ in my ears; like my heart playing catch up. This is much less frequent now.
Medications and Supplements The only non MP meds I take are Zoton 40mg (gastric) and 4 Paracetamol/day.
In April this year I discontinued the Endep 10mg (for leg pain, sleep) without issues after taking it for years.
Working I have worked part time 3 full days/week throughout the MP. Pre-MP and early MP it was a fair endurance and I had a work day followed by a recovery day with minimal activity! I regularly work extra hours now and have Flexi time to take! I manage the full days pretty easily now although my back is usually weary by the end of the day. I no longer need my 15 minute rests (was 2/day) to help me get through the day.
I ceased wearing the NoIRs at work in October 2008. It was time and I had no additional symptoms without them. I had worn them since October 2005! I still leave the vertical blinds closed.
Rest/horizontal time The numbers continue to drop! This year - average hours/day - Jan 11.83, Feb 11.95, Mar 12.07, April 12.2, May 11.8, Jun 11.95, Jul 11.48, Aug 11.6, Sep 11.15, Oct 10.75, Nov 11.3, Dec 10.75.
Yearly Average - 2008 11.6 hours/day, 2007 12.97, 2006 14.5, 2005 14.25, 2004 14.2
At home I am up and about doing things or using my computer, using my laptop in bed is becoming a rare event! I can go on holidays with friends and stay up as long as they do! I used to have to disappear half of the time for extra rest!
IP/herx This has been pretty mild this year as I have not hurried to increase the abx. At this final level of the ZMB combo, my main IP is around my shoulders, particularly the front. IP rarely disturbs my sleep now and it doesn’t really slow down my activity.
Avoiding the Light At home we have gradually let more light in. We limit the light with partially open curtains and still have the window covered in the bathroom. I keep my skin covered with clothing.
I don’t really limit my time outdoors now. I always wear a hat, NoIRs (10%), invisible zinc sunscreen and cover well and have no noticeable increase in symptoms from exposure.
Confidence in Improvement I feel confident that I will continue to improve with the MP. It just keeps getting better as I get my life back!
I am so grateful to Professor Trevor Marshall for his research and this website for giving me another chance at life! Thanks to all the volunteers for their contribution.
____________________
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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BARNEY
Moderator
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Posted: Thu Jan 1st, 2009 00:06 |
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Vicki,
Congrats on your improvements on MP!!!
HAPPY NEW YEAR!!!!
HANG IN THERE, WE WILL MAKE IT!!!BARNEY
____________________
64jointsarc77skinsarc80lungsarc81asthma/migranes
95rkidneyremoved(cyst)diabetic/gallbremoved,96
totalhyst(cysts,endom)01fibro,Benicar40/20mg&xtra
as needed,stage5,
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Vicki SA
Member in Phase 3
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Posted: Sun May 17th, 2009 10:05 |
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Milestone!
G'day all,
I led a ride for the Ulysses Club (older motorcyclists) on Mother's Day! This is something that I couldn't have imagined, doing even as recently as last year.
A female club member had said she would lead it and she has only had her bike
licence about a year or so. That was pretty gutsy! Anyway 4 grand mal seizures
put paid to that idea as she won't have a licence for at least 6 months. Scary
Stuff! Anyway she is doing ok and hopefully on her way to stability.
I volunteered to take the ride. It is something that I have been thinking about
for a while. I am probably the most experienced female rider in our branch,
having ridden bikes since I was 13.
No planning had been done for the ride except the destination - Wellington on
the River Murray. There is only so many ways to Wellington and most of them mean
stopping for morning tea at Strathalbyn which is very regular morning tea stop.
Nothing wrong with that; there are some excellent roads around Strathalbyn.
Hubby suggested going down south first and we planned out a route and went for a
drive on the Thursday. The result was a pretty boring ride with fairly straight
roads and stopping at Strath. We had managed to miss all the good roads!
Friday - work
Ok back to the drawing board - gotta head for the hills. Sketched out a route
and another drive on the Saturday. That seemed much more interesting but put me
on a lot of roads I wasn't familiar with and lots of corners to remember. When
you lead a ride, you not only have to remember where you are going and indicate,
you have to know where to put your corner marshalls safely as well as actually
remembering to stop at Stop Signs etc and look before proceeding! Apart
from that you have to keep to the speed limit and correctly judge the corners
and lead people in at an appropriate speed. Wow! New respect for rides leaders.
Monday - work
Tuesday - after much checking of instructions with Google maps and typing them
out and fitting to display window on the tank bag, I set off on the bike to try
out the tricky bit of the ride through the hills to Littlehampton. I got lost!
Freak out - had to do a couple of U turns on narrow winding road, going very
carefully and watching out for cars coming hurtling around the corners!
Backtracking to where I knew I was right and try again. Ok made it to
Littlehampton, directions need tweaking! Home and back on the computer and
correcting plan. Son was home, so I convinced him he needed to drive while I
checked the directions. Twice in one day! Ok I think directions are good now.
Wednesday - work
Thursday - on the bike again making sure I can follow the directions and making
sure I know where to put the corner marshalls. Success! I think I can do this.
Will need to ride it again on Saturday to be sure.
Friday - work
Saturday - S***! Forgot I had agreed to do Emergency First Aid - full day
course. Course finished about 4 and so Hubby and I set off on the bikes with me
leading and him following on his bike. I was doing the pointing to position the corner marshalls. It all went pretty well and definitely a good experience to have another practice.
Sunday - up bright and early and washed the bike before setting off to the
meeting place. Mother's Day so not expecting too many bikes. 20 bikes! 10am time
to give the talk and tell them where we were headed. mmm the time has come, lead
on! It all went pretty well. People loved the winding roads and the beautiful
autumn scenery through the hills. No one got lost and the planned regroup at
Hahndorf was good and we rode down the main street there as a solid group.
People on the side of the road were taking pics! The stop at Littlehampton was
at a nice place (servo/general store/cafe/PO all rolled into one). Onto the
'easy' bit of the ride although less practiced. I managed to not get lost
although there was a mistake in the directions and I was looking for one more
'left and right' that didn't exist. I pulled up at a possible turn and checked
the signs, checked the directions, checked the signs and then went straight on
LOL. Some people said they thought I was letting them regroup - oh yeah that WAS
what I was doing - not!
Arrived safely at the Pub for lunch at Wellington - whew! My bit was over. 18
stayed for lunch and we had a good social and I let Hubby lead on the way home.
Amazing that I could handle all this effort (and stress) and pull it off on the
day with few after effects (some soreness - mostly eased by a bath when I got
home). I went to work on Monday and Tuesday did some housework, the shopping and after tea went to the Ukulele Club from 7.30 - 9.30 (+ 2hours travel) and then
Wednesday back to work again!
All this would never have been possible without the MP!
Cheerio Vicki
____________________
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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BARNEY
Moderator
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Posted: Sun May 17th, 2009 15:23 |
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WOW Vicki,
What a fantastic report....maybe I enjoyed it so much because we used to ride Harleys....and I could just go along with you (in my mind)....so much fun and you did great. We used to ride with a group called the Retreads (you had to be 50+)....our kids thought it was cute to call us the Retards. It was a great group of mixed gender people.
Your trip was a great reminder of wonderful days and so very great that you can have a life while on MP.
HANG IN THERE, WE WILL MAKE IT!!!BARNEY
____________________
64jointsarc77skinsarc80lungsarc81asthma/migranes
95rkidneyremoved(cyst)diabetic/gallbremoved,96
totalhyst(cysts,endom)01fibro,Benicar40/20mg&xtra
as needed,stage5,
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k
Member in Phase 3
| Joined: | Fri Aug 10th, 2007 |
| Location: | Australia |
| Posts: | 254 |
| Status: |
Offline
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Posted: Sun May 17th, 2009 23:36 |
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Fantastic!!! Very excited to hear of all the fun enabled by your progress!!! Great!!! I look forward to accomplishing such feats of my own.... though they may not involve motorcycles.... ; )
regards, k
____________________
CFS menorrhagia & dysmenorrhoea anxiety depression paxil 600mg calcium daily Ph1Oct07 Ph2Feb08 Ph3Sept08 25D:Jul07=50 Oct07=23 Jan08=13.2 Oct08=12.8 Sept09:10 NoIRs cover-up low lux home lite exp r/t to work
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Vicki SA
Member in Phase 3
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Posted: Tue Aug 4th, 2009 01:57 |
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MP day 1317 (4/8/2009)
Olmetec 40mg q6-8hr - 27/12/05, Minocycline 100mg 16/3/06
Phase 2 - 13/4/06 to 11/01/07 (up to Z 125mg)
Phase 3 - 12/01/07 - ZMC, 6/1/08 – ZMB, 21/2/09 - ZDC
Symptoms. Base - Generalised muscle pain, burning feet, dry eyes, need for Horizontal time – July 2009 – 10.72 hrs/day, most activity - sitting down, increasing walking distance. Energy generally pretty good now.
Varying over the cycle – myalgia - shoulders, middle back + myoclonus (body jumps) at times.
Rating 1 – 2, All tolerable!
Non MP meds - Pain – 4 paracetamol/day, Gastric Reflux - Zoton 30mg
Sun Exposure – not limited, hat, NoIRs, well covered, invisible zinc.
G'day all,
I have been continuing with ZDC and going well. I have good energy and do things everyday. I fell over at the beginning of June and sprained my shoulder. Thankfully it is much better now but it certainly limited my activities and that has been something I have been very frustrated about! To have so much of my life back with the MP and then not be able to do things . . . 
I’m on my way, uh-huh, uh-huh!
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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BARNEY
Moderator
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Posted: Tue Aug 4th, 2009 05:19 |
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Vicki,
Sorry to hear about your shoulder, but glad it is coming along good.
Karna’s thoughts: Sometimes I just need reminding that it's not about winning the race, it's about just crossing that finish line.
Drink plenty of water, xtra (sea) salt (regular salt is mostly chemicals) as needed, lots of rest while avoiding the sun and avoiding Vit D in your foods!!!!!
HANG IN THERE, WE WILL MAKE IT!!!BARNEYLast edited on Tue Aug 4th, 2009 05:20 by BARNEY
____________________
64jointsarc77skinsarc80lungsarc81asthma/migranes
95rkidneyremoved(cyst)diabetic/gallbremoved,96
totalhyst(cysts,endom)01fibro,Benicar40/20mg&xtra
as needed,stage5,
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Vicki SA
Member in Phase 3
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Posted: Sat Sep 26th, 2009 02:12 |
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MP day 1370 (26/9/2009)
Olmetec 40mg q6-8hr - 27/12/05, Minocycline 100mg 16/3/06
Phase 2 - 13/4/06 to 11/01/07 (up to Z 125mg)
Phase 3 - 12/01/07 - ZMC, 6/1/08 – ZMB, 21/2/09 - ZDC
Symptoms. Base - Generalised muscle pain, burning feet, dry eyes, need for Horizontal time – Aug 2009 – 10.52 hrs/day, most activity - sitting down, increasing walking distance, bicycling as I can. Energy generally pretty good now.
Varying over the cycle – myalgia - shoulders, middle back + myoclonus (body jumps) at times.Rating 1 – 2, All tolerable!
Non MP meds - Pain – 4 paracetamol/day, Gastric Reflux - Zoton 30mg
Sun Exposure – not limited, hat, NoIRs, well covered, invisible zinc.
G'day all,
I have been continuing with ZDC and going well. I have good energy and do things everyday. My shoulder is still slightly sore from the fall (start of June) but gradually getting back to normal now. I bought an Electric bicycle and have been riding it regularly peddling on my own when it is easy going and peddling/using the motor for hills. In Australia we are only allowed 200W power but it is a big help.
I’m on my way, uh-huh, uh-huh!
Cheerio Vicki
____________________
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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Vicki SA
Member in Phase 3
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Posted: Sat Oct 10th, 2009 08:49 |
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G'day all,
As a lot of you would know I enjoy riding my motorbike and going away to Rallies. Rallies are just camping and social weekends. I have been on the Marshall Protocol since 28/12/2005 and I have progressed well and continue to improve and get more of my life back. Today I was reflecting on how things have changed over the years and I thought I would share this snap shot of Septembers and the Rally we like to go to.
September Rallies – Distance 575Km one way
2005 – not well enough to go, Hubby went alone.
2006 – Thursday - woke in pain the day we were leaving, only able to be minimal help with the packing, rode to Peterborough and rested 1½ hr before going to Pub for tea, in bed by 7.
Friday – travelled to Rally site and walked around socialising carrying seat, stayed in a Motel, rest 1¼ hr, tea at the Pub, bed at 7.45.
Saturday – got up at 11, walking around rally site carrying seat, rest 1 hr, tea at Rally, sitting watching the Band, bed at 9.
Sunday – up at 8.30, rode home, I was losing coordination as we came across town, not able to help unpack, bath to ease the sore muscles, rest 1 hr, up for tea, bed at 8.
Mon – Fri – I had a week off from work to recover and was very sore (muscular) for the first few days.
Hours spent horizontal – Thurs 15, Fri 13.5, Sat 16.5. Sun 12.5, next 7 days total 112.25. Av for the month 14.23/day
2007 – Fri – rode to Rally site with rest stops along the way, helped set up tent, Pub for tea, back to Rally site and walking around socialising, bed at 10.15.
Sat – up at 7, walk taking pics, rest/sleep 1 hr, sitting talking in shade needing to avoid heat, tea at Rally, socialising sitting, bed at 9.
Sun – up before 8, packing and left before 10, rode home with rest stops 7½ hrs, stiff and sore for the last bit coming across town, son helped unpack, social before bath to ease muscles, rest ½ hr, bed at 9.
Mon – Fri – had Monday off work but felt well enough to have gone and did things around home instead. The rest of the week was as normal.
Hours spent horizontal – Thurs 11.75, Fri 16.25, Sat 9.5. Sun 15.25, next 7 days total 93.5. Av for the month 12.69/day
2008 – Tues – went to the Royal Show for the first time in years and walked around a lot, Wed – work.
Thurs – travelled about 300Km and went to Pub for tea and out to visit private motorcycle museum after and social with owners.
Fri – ride to Rally, tried to help put up tent but effected by heat and had to rest in shade, BBQ and social at friend’s for tea and evening.
Sat – went on a ride to see the local sights despite the heat and coped by drinking lots of water at every stop and taking some Panadol, later caught up with a Net pal and then had tea and social in the evening.
Sun – rode home and helped unpack, ? bath for muscles – perhaps, didn’t note it.
Mon – Fri - back to work and life as usual.
Hours spent horizontal – Thurs 11, Fri 11, Sat 8.5. Sun 11.75, next 7 days total 77. Av for the month 11.15/day
2009 – Rally 700Km
Thur – we had intended to ride all the way but had issues with Hubby’s bike so we only rode part the way, no rest needed on arrival, tea at the Pub and social.
Fri – ride to campsite (very windy!) including extra 125Km, helped set up camp, no rest needed, social.
Sat – warm day, bus trip seeing the sights around the area, back to camp and social, tea in clubrooms, social back at camp.
Sun – pack up and ride home, very windy, bit stiff for the last bit from lying down on the tank to avoid the wind, no rest needed, bath later to wash hair.
Mon – Fri – back to work and life as usual.
Hours spent horizontal – Thurs 11.25, Fri 10.75, Sat 12. Sun 11.25, next 7 days total 66.5. Av for the month 10.3/day
Great to feel that I am still improving and that it just keeps getting better each year.
Cheerio Vicki
____________________
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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k
Member in Phase 3
| Joined: | Fri Aug 10th, 2007 |
| Location: | Australia |
| Posts: | 254 |
| Status: |
Offline
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Posted: Sat Oct 10th, 2009 09:19 |
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Thank you so much for sharing Vicky. It is so important immensely helpful for those at much earlier points in the journey/protocol.
Thank you.
regards, k
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CFS menorrhagia & dysmenorrhoea anxiety depression paxil 600mg calcium daily Ph1Oct07 Ph2Feb08 Ph3Sept08 25D:Jul07=50 Oct07=23 Jan08=13.2 Oct08=12.8 Sept09:10 NoIRs cover-up low lux home lite exp r/t to work
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BARNEY
Moderator
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Posted: Sat Oct 10th, 2009 14:56 |
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G'day Vicki,
What a wonderful report!!! Glad you had such a great time. We used to ride Harley's and go to all kinds of events or just ride for the fun of it.
Glad you are doing good, keep up the good work.
HANG IN THERE, WE WILL MAKE IT!!!BARNEY
Last edited on Sat Oct 10th, 2009 14:57 by BARNEY
____________________
64jointsarc77skinsarc80lungsarc81asthma/migranes
95rkidneyremoved(cyst)diabetic/gallbremoved,96
totalhyst(cysts,endom)01fibro,Benicar40/20mg&xtra
as needed,stage5,
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