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Vicki SA
Member in Phase 3
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Posted: Wed May 17th, 2006 11:55 |
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G’day,
I thought I would start a post here in the Phase 1 Alumni Forum. I commenced the MP Phase 1 on 27/12/05 and had been avoiding sunlight since October 05. I have been ill with ME/CFS since I had glandular fever and viral hepatitis in July 2000.
Previous posts in the Benicar and Minocycline Forum
http://www.marshallprotocol.com/forum20/5345.html
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.
I started Phase 2 at half the recommended (first) dose of the 2nd abx and that combined with a delay in getting the Phase 2 meds organized, has given me a fair break, where I have felt like I am cruising with much lower symptoms.
Things that have improved:
Sleep. 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.
Muscle Pain. 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.
Post Exertional Malaise. 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!
Energy. 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.
Brainfog. 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 songwriting. Early stages but it is so nice to have the inspiration and capability to start on something new!
Drooped right eye. 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. This seems to be happening less often.
Medication & Supplements. 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.
Working. I work 3 days a week and have only missed 2 days since I started the MP.
The journey:
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 LOL! 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.
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.
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.
Avoiding the light. 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.
Thanks so much to Dr Marshall and the wonderful volunteers on this site, especially Aussie Barb.
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 Jun 24th, 2006 04:24 |
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MP day 179 (23/06/06)
Benicar 40mg q8hr - 27/12/05, Minocycline qod - 100mg 16/3/06
Phase 2 - 13/4/06,
G’day all,
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 
Today is a bit of a milestone because I have gone up to the level that is half of the full dose required for the Z. So I am not yet half way, through Phase 2 but I will be once I do the necessary cycles at this dose. I anticipate that I will do 2 cycles at this level.
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.
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 LOL! 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. 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”!
Better health for us all,
Cheerio VickiLast edited on Sat Jun 24th, 2006 04:27 by Vicki SA
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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 Jul 9th, 2006 03:53 |
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MP day 194 (8/07/06)
Benicar 40mg q6-8hr - 27/12/05, Minocycline qod - 100mg 16/3/06
Phase 2 - 13/4/06,
G’day all,
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.
I so hope that all people with Th1 (and especially PwCs & PwFMS ) are helped by the MP. I don’t know if I am in a honeymoon period and I have still got 'hard yards' to come but I am very encouraged. I guess in my favour - I feel that I only have CFS and I haven't collected a lot of other complications since it all 'started' after glandular fever and viral hepatitis in July 2000.
Also I have very good support around me and I don't actually do a lot of 'physically active' things like housework or making meals etc. I am very fortunate that I can chose to do the things I am able to do and get the rest (horizontal time) I need and that helps to keep the symptoms low enough to feel not 'too crappy' most of the time.
I’m on way, uh, uh, cheerio VickiLast edited on Sun Jul 9th, 2006 03:54 by Vicki SA
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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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Dr Trevor Marshall
Research Team
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Posted: Sun Jul 9th, 2006 07:34 |
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Hey, Vicki, good to hear you might have turned the corner.
I was looking at Google trends for the number of people searching for the words "chronic fatigue" and Adelaide is number two on the list. Amazing.
http://tinyurl.com/l7vbj
Even more amazing is that Adelaide is followed by Melbourne, Brisbane, Perth and Sydney.
Mind you, I am not sure why St Albans (half way between London and Luton) generated even more enquiries than that
..Trevor..
ps: click on the "regions" tab for that Google search...
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elinor
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Posted: Sun Jul 9th, 2006 11:03 |
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Just a thought, I'm not sure what time period is covered by the searches from St Albans but if you remember there was a massive environmental disaster in this area last year, a fire at a fuel depot sent vast black clouds from the burning fuel into the air above this region.
This area is heavily populated and many people will have breathed in the pollutants. Could such pollution cause fatigue symptoms?....or could it have aggravated existing conditions to spark off chronic fatigue?
Also it would seem that 'chronic fatigue' is a symptom of many illnesses but that is different from the condition known as CFS, unfortunately we also have too many people suffering from CFS here too.
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Dr Trevor Marshall
Research Team
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Posted: Sun Jul 9th, 2006 12:03 |
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Elinor,
Chronic Fatigue is the symptom which I noticed (back in the 1970s) was common to many of the autoimmune diseases, and that is why I was eventually able to show they are all (well, to this point, many of them) caused by the same thing - stealthy intraphagocytic bacteria. CFS just happens to be "no clinically diagnosable condition except" the chronic fatigue, and springs again from the same cause.
Thanks for the info about the pollution aty St Albans. Whenever there is a scare about pollution people think it causes chronic disease, but I have yet to see any persuasive evidence it does. Even Berylliosis is a Th1 disease, not actually caused by the Beryllium...
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Vicki SA
Member in Phase 3
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Posted: Sun Jul 9th, 2006 13:08 |
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mmm very interesting. Thanks Trevor. Yes it would be certainly interesting to know some statistics but I guess that is impossible with the (still!) current climate of difficulty of actually getting a diagnosis. So many Doctors who do all the wrong tests and then tell people that "it is all in their heads". Plus so many people give up on Doctors because they seem to offer very little help. Most PwCs just learn to live with it and aren't able to work.
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: Thu Nov 2nd, 2006 10:29 |
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MP day 311 (2/11/06)
Benicar 40mg q6-8hr - 27/12/05, Minocycline qod - 100mg 16/3/06
Phase 2 - 13/4/06
G’day all,
I thought I had better do an update here, since it has been a while !
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.
Since then I have made my way back up to where I was with the Z. I had only done one (10 day) cycle at this level (in Aug & it was a bit too much at the time) and so am currently in my 2nd cycle at this level. Things are going ok so far and I think I will do another cycle at this level before increasing. At this rate I will be ready for Phase 3 about the end of January.
I am confident of my improvement with the MP. The improvement is slow and more subtle than you’d like but my illness has definitely turned around. I thought I should itemise things as I did in an earlier post in this thread.
Sleep
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.
Muscle Pain
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.
Post Exertional Malaise
I definitely recover quicker after any activity and generally have less consequences.
Rest/Activity/Energy
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. 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!
Brainfog
I guess I still do have some brainfog at times but not a lot. I generally feel clearer most of the time.
Racing Heart Beat
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.
Medications and Supplements
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.
Working
I continue to work 3 days a week and I have taken very minimal sick leave while on the MP.
I'm on my way, uh huh!
cheerio VickiLast edited on Thu Nov 2nd, 2006 10:34 by Vicki SA
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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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Lantern
Member in Phase 2/3
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Posted: Mon Nov 6th, 2006 04:13 |
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Hi Vicki,
It's great that you're able to record your progress in such detail, as you can definitely see some positive changes happening. It's also fantastic that you've been able to get around to doing a little "home organization". To finally clear up things that have been on the "To Do Eventually" list must be very satisfying!
All the best!
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CFS IBS Malabsorption Hypothyroid Rickettsia. Ph1 Apr06, Mod.Ph2 Oct06, Ph2 Feb07, Ph3 Aug07. Endep T3/T4 Panadol. NoIRs, homebound in low lux. Apr07 1,25D=15.4, 25D=13.6
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Vicki SA
Member in Phase 3
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Posted: Mon Nov 6th, 2006 09:14 |
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Thanks Shadow - may your improvement follow!
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.
cheerio VickiLast edited on Mon Nov 6th, 2006 09:15 by Vicki SA
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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 Jan 6th, 2007 01:02 |
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MP day 377 (6/1/07)
Benicar 40mg q6-8hr - 27/12/05, Minocycline 100mg 16/3/06
Phase 2 - 13/4/06, Phase 3 - soon!
G'day all,
I have passed the one year mark on the MP. I am on the final level in Phase 2 and will move into Phase 3 when I am ready, probably later this month.
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 tratments 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!
Despite this, 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.
I’m on my way, uh-huh, uh-huh! 
Cheerio Vicki
January 2007:
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.
February 2007:
Things that have been slowly improving over the year are getting very noticeable now. The average time I spent resting/horizontal in January 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!
And something else - things are moving much better and easier through my bowel (and more often).
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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janebisset
Member
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Posted: Sat Feb 24th, 2007 04:33 |
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| Hi Vicki just read your progress with great interest. It's a relief to see that other people have sypmtoms such as racing heart, for which i previously had no explanation, and of course that you are improving. I'm on a slight variation of the Marshall Protocol so I couldn't really say what phase I am up to, but it has been a year and some months and I am feeling a bit despondant. I had to stop the minocycline for many months because of bad skin reactions, but I decided recently that they might be worth it in the end. Hopefully once I start taking the Benicar I might begin to improve more quickly. It's good to see that it is working for other people
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Posted: Sat Feb 24th, 2007 05:30 |
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Hi Jane,
I'm sorry you are not doing so well. I hope you will be able to find a doctor who will support you on the Marshall Protocol.
There is no "slight variation of the MP". One is either on it or they are not. Without Benicar, there is no MP.
It concerns us when someone who is not following the MP guideline says they are on the MP. Of course, they will not do well and then folks will think the MP doesn't work.
Your reaction to mino was likely immunopathology unmitigated by a Benicar blockade. Let us know, in your questions thread, how we can help you succeed.
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Vicki SA
Member in Phase 3
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Posted: Sat Feb 24th, 2007 06:18 |
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Jane,
All the best in your journey for better health! Yeah there is a lot of stuff with these illnesses that Drs. either, discount your experience or can't explain!
I agree with Meg - the Benicar makes all the difference! If you have been taking antibiotics without the inflammatory blockade of Benicar, then you have been doing it the tough way. The best thing about the MP is the tools you have to moderate any IP (immunopathology)! You learn to be so much more in control of your symptoms.
My GP also suggested a 'pretend' version of the MP. A year down the track, I am so glad that I have stuck to the well researched MP. The support on this website is fantastic!
Thanks so much to all the volunteers! They are also dealing with their own illness but help others along the path to wellness.
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 Mar 10th, 2007 08:15 |
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MP day 438 (10/3/07)
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 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! My pain levels continue to drop really. Most days I only take 4 paracetamol now. 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. The brain is much better and the ‘foggy’ bits are definitely becoming uncommon 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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Reenie
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Posted: Mon Mar 12th, 2007 15:40 |
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Hi Vicki,
GOOD to see you progressing on the MP. I've been doing MUCH better now and feel I'm finally making some headway in regards to being able to ride my bike again!
I guess I really didn't realize just how sick I was... prob sicker than you were when starting the MP since I wasn't able to ride and I know you've never stopped!
As for Jane, YES, it is absolutely VITAL to take Benicar to make good progress on the MP. I recently tried to lower my dose from q6h to q8h, but since I've been outside and in the daylight more, I have to keep my dose at q6h to do that with minimal adverse symptoms. Taking Benicar (in a full blockade) is such a "small price to pay" to get better, IMO.
I'll be posting my latest in my thread. I went on a 200 mile ride yesterday in nearly 90 degree weather and spent all day out IN THE SUN, with almost NO reaction... woo hoo! 
Reenie's latest progress
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Vicki SA
Member in Phase 3
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Posted: Thu Apr 5th, 2007 09:15 |
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MP day 464 (5/4/07)
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,
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.
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!
Added to this, 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!
I’m on my way, uh-huh, uh-huh!
Cheerio Vicki
ps Reenie - good to hear that you have been on another ride since your last post!
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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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jrfoutin
Research Team
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Posted: Thu Apr 5th, 2007 20:32 |
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Vicki,
I also think your charting gives you the capability of seeing these things helps you know you are on your way uh-huh!
Facts always are good to replace doubts (wink).
Great report today Vicki, so good to read--Janet
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Sarcoidosis 125D61, MP10/05 ModP2 12/05 Ph2 6/06 Ph3 10/06, NoIRs limited outings covered, 2/08 25D6.2, 10/08 25D6.9
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Vicki SA
Member in Phase 3
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Posted: Tue Jun 5th, 2007 02:40 |
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G’day all,
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 (yesterday) 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!
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!
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 Jun 10th, 2007 02:41 |
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MP day 530 (10/6/07)
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. Generalised muscle pain - spine, upper back/neck/shoulders, hips, burning feet, muscle spasm in my lower back, + myoclonus – at times. Immune Response – scratchy throat, ears, eyes.
G’day all,
I managed at work ok this week although I was glad to get to the weekend . We have a long weekend here and so I have 4 days off now before work next Wednesday . The symptoms have been pretty low and I raised the C on Day 9. Day 10 I was getting the uncomfortable legs and was pleased to take the Z again this morning.
Something that I forgot to mention about our 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!
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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