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Vicki SA
Member in Phase 3
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Posted: Thu Mar 2nd, 2006 06:37 |
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MP day 66 (2/03/06)
Benicar 40mg q8hr started 27/12/05
Minocycline increased to 75mg qod 21/02/06 (50mg 9/2/06, 25mg 13/1/06)
G’day all,
I am going along ok. I am not seeing my Doc ‘til March 30th so there is no rush to change things. I figure that I will stay on the 75mg Mino until I think that I will feel better if I go up to 100mg. It is getting dark earlier here at last so that is encouraging!
I’ve been reading people’s posts about wearing NoIRs at work and have to say that I just wear them all the time. It is only at home (suitably caved) that I am able to take them off. Once you get past the initial reaction, people seem to accept that you are wearing them and I get very few comments except to say that it must be hot with long sleeves and hat. I have gone completely weird I suppose. I just wear a wide brimmed hat in the office. I know I could wear a cap but then I would have to remember to change it if I go out the door. We have one separate building and I also go out to visit clients in their homes at times. KISS (keep it simple stupid) is my motto LOL.
Something I haven’t mentioned much is how my eyes are going. Initially I had a bit of crusty stuff in the mornings, like conjunctivitis and I got some drops (sulfacetamide sodium 100mg per 1ml LIQUIFILM) from the Chemist and used them for about a month. Then I thought I would just see how it went and now I don’t seem to have any discharge or crustiness in the morning, my eyes are still a bit sore, sort of feeling a bit strained at times. I do consciously make the effort to release any tension and relax my eyes whenever I think of it and especially at night when I am going to sleep. I haven’t tried my contact lenses again and I guess my eyes feel a bit dry. Should I get them checked or not worry if it seems reasonably minor?
Cheerio Vicki
27/02/06 lowered to 50gm Mino for a break
Slept ok and woke with sore muscles presumably partly from the dog washing.
The mood was pretty low as I went to work and remained that way and bordering on irritable all day.
I was pretty sore for most of the day and came home and went to bed before tea. Got up for tea and then in bed before 9.
28/2/06 2nd day on lowered to 50mg Mino for a break
Slept well and rested until 9.30 and then had a bath to ease the muscles.
Went to Tai Chi and then came home and rested before food shopping.
Muscles now overtaxed again LOL.
Rested before a late tea.
Took Benicar 4 hourly: 5am 40mg, 9am 20mg, 1pm 20mg, 5pm 20mg, 9pm 40mg. I did this because I usually overdo it at Tai Chi and I go in the car for the shopping trip as well (so more sun exposure). Usually I ride my motorbike to work and am well covered (including balaclava under full face helmet + all protective gear). Something helped! I also rested a lot but anyway am pleased with the result. I think I will continue with the 4hour Benicar dosing for Tuesdays.
1/3/06 75mg Minocycline 1st day in 4th cycle
Slept ok, workday
Had a headache and was very weary by the end of the day.
Came home and went to bed to rest and then was up for an hour to eat tea and chat.
2/3/06 75mg Minocycline 2nd day in 4th cycle
Slept ok
Had the day off and spent the morning in bed reading stuff on the laptop.
We had another very hot day here, 35°C. I don’t cope with the heat so everything was done in small bits and pretty gently.
In the afternoon I played my guitar in front of the evaporative cooler and then later did some Tai Chi and watched some new movements on the DVD (and used my percussion massager on the tight muscles LOL).
Later I loaded the dishwasher and made tea (my turn) and then back to bed for a rest. I use the laptop while I am horizontal so not totally resting just idling LOL. It is nearly dark so I will go outside soon and attend to a couple of small things before calling it a day!Last edited on Thu Mar 2nd, 2006 06:43 by Vicki SA
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ME/CFS 2000, Splenectomy, 8/05 - 1,25D51,25D16.5, Ph1 12/05, Ph3 1/07, Zoton 40mg, 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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alayne
Member in Phase 3
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Posted: Thu Mar 2nd, 2006 15:22 |
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Hi Vicki,
I smiled when you said you have your laptop there when horizontal. I do the same thing and indeed spent yesterday in bed with my mine.  Just didn't feel like sitting or standing, and lying there, felt a need to not "waste" the entire day.
Re: dry eyes. Many folks here use OTC lubricating eye drops for dryness. I don't know the Autralian brands, but I'm sure you have compatible drops. I'll also bet that Aussie Barb and/or other Aussies have some good suggestions.
All the best! Alayne
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ME/CFS/FM 6/05:25D-34 1,25D-69, 11/07:25D-8 1,25-37, Sick 6-11 mos/yr x20+yrs. NoIRs/Avoid Sun/D/Use Zinc oxide. 11/17/05-Ph1, 5/06-MPh2, 12/06-MPh2#2, 6/07-MPh2#3,1/08-Ph2, 4/08-Ph3, NonMP Meds:Sleep:1-2mgLoraz or OTC q2d/MThistle/Calc&Mag/Lysine
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Vicki SA
Member in Phase 3
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Posted: Fri Mar 3rd, 2006 04:29 |
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Yeah Alayne,
It lets you feel like you are doing something useful LOL. It also connects me to others with the illness and that is helpful. It is amazing how isolated you can feel with this illness! People with 'normal' health just don't really relate to what you deal with every day, even if they are doing their best to understand.
cheerio Vicki
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ME/CFS 2000, Splenectomy, 8/05 - 1,25D51,25D16.5, Ph1 12/05, Ph3 1/07, Zoton 40mg, 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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ElizaH
Member
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Posted: Tue Mar 7th, 2006 00:04 |
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Hello Vicki
For dry eyes I use Bion Tears. They don't have preservatives which can cause trouble in some people. My eye man prescribes three boxes at a time with aspecial authority and I get them at the PBS basic cost for the three. I find they are very good.
Were you able to rescue your 40% Noirs?
All the best
ElizaH
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Fatigue/nausea/skin late98 Uveitis+Glaucoma, dx Sarc dx 3/99, breathing probs 5/05: NOIRS 3/05: oxygen 24/7 5/06: 15Mar05 1,25D=80.76, 25D=13.2: Votum 40mg q6h 24/11/05 Phase1 12/05-4/06 Modif Ph 2 13/4/06
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Vicki SA
Member in Phase 3
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Posted: Tue Mar 7th, 2006 01:10 |
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Thanks Eliza,
No I wasn't able to rescue my 40% NoIRs. I will have to buy some more. They are too scratched (after skidding along the floor under my foot LOL) to be worn for long but I keep them near my computer and use them if I just want to turn the monitor on, to have a quick look at something and haven't got my 10% NoIRs with me. I did check with the local optometrist but was advised that there was nothing to do that was worth trying to make them wearable.
I am thinking of getting my eyes checked, just to be sure and so I will keep in mind the Bion tears. My GP will presribe them if the optometrist thinks they suit and is unable to prescribe.
cheerio Vicki
Last edited on Tue Mar 7th, 2006 01:12 by Vicki SA
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ME/CFS 2000, Splenectomy, 8/05 - 1,25D51,25D16.5, Ph1 12/05, Ph3 1/07, Zoton 40mg, 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 Mar 7th, 2006 02:17 |
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MP day 71 (7/03/06)
Benicar 40mg q8hr started 27/12/05
Minocycline decreased to 50mg qod 8/3/06,75mg qod 21/02/06 (50mg 9/2/06, 25mg 13/1/06)
I am weaning off of Transfer Factor (TF). I did try to stop it earlier but could feel myself sinking without it and so put it back in. I have halved the dose for a few weeks and then took 1 capsule every 2nd day. That’s when the herx seemed to get much stronger and I have decided that taking the TF every 2nd day might not be good and stopped it all together. I am not sure whether now I am able to herx more without the TF or I am just generally worse without it!? I have decided to go back to 50mg until I feel I am doing a bit better to see if that helps. I might also increase the frequency of the Benicar as needed. I will be happy to stop the TF permanently if I can because it is not cheap and not recommended on the MP. I am still taking 10mg DHEA as well and realise that it isn’t recommended either. If I am to wean from the DHEA, it will have to wait!
Cheerio Vicki
3/3/06 75mg Minocycline 1st day in 5th cycle
Slept well.
Had the run over by the bus feeling all day (very sore along spine and all the bits in between!) Pretty weary by the end of the workday and went home to bed.
Had a late tea in bed, too dagged to do anything but use the laptop in bed.
4/3/06 75mg Minocycline 2nd day in 5th cycle
Slept ok, a very hot night and was awake for an hour or so in the middle.
Another hot day and I kept the activity level pretty low. I find hot days like this very frustrating and then I have to deal with the emotion. I did play my guitar in the afternoon and otherwise did a fair bit of reading. We did get a breeze in the evening and so that should make sleeping better.
Any herxing was either pretty low or moderated by the low activity.
5/3/06 75mg Minocycline 1st day in 6th cycle
Slept pretty well.
I woke with a headache and the ‘run over by the bus’ feeling. I take the Minocycline at 5am and then go back to sleep.
I stayed in bed and used the laptop until about 12 and then got up and made myself a sandwich and took some pain relief for the headache and pain. The herx seemed to be quite strong and I needed to lay down and tried to sleep. I wasn’t able to sleep and felt pretty awful until soon after I took my next dose of Benicar. The Benicar improved everything in about 20 minutes and that made me wish I had thought to take it earlier!
Herxing Sx: headache, neck and jaw tight (like cement), higher pain in legs, around knees and elbows, body herx – spine, fever/pumping out heat. Nausea. Later at night I woke with my pulse sounding in my ears (not a new thing) but also in my legs and feet (that was new!).
6/3/06 75mg Minocycline 2nd day in 6th cycle
Had broken sleep although I had a 4 hour block of sleep in the middle of the 7½ hours.
Felt ok when I woke up but felt pretty rattled by the time I got to work. This is what seems to happen (even pre MP) after I have been worse. I feel rattled even though I feel much better. The feeling passed as the day went on. I had a busy day and was sore and dagged by the end of it. I came home and went to bed. Up later for tea and then back to bed. I think I will miss tomorrow’s Mino dose and take a break.
7/3/06 extended 75mg Minocycline to a 3rd day in 6th cycle
Slept pretty well 9 hours in 2 bits
Spent the morning in bed and then got up to tidy a bit for my cleaner and was moving around like an old woman, carefully and slowly without much energy. Thankfully there wasn’t too much to do and then I rested on the bed while she cleaned. I went food shopping later and my son drove me and helped.Last edited on Tue Mar 7th, 2006 02:20 by Vicki SA
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ME/CFS 2000, Splenectomy, 8/05 - 1,25D51,25D16.5, Ph1 12/05, Ph3 1/07, Zoton 40mg, 2008 - cover with light r/t Work 3/7, NoIRs, hat, cover well, invis. zinc for outside, low lux home, Sept08 25D - 8
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Aussie Barb
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Posted: Tue Mar 7th, 2006 02:39 |
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Vicki
Thank you for posting. Just wanted to let you know that it is a good idea to wean those heavy duty supplements slowly as you are doing and planning on doing, so you dont get let down from them too quickly.
re the DHEA: see Why should I avoid hormone replacement medication? It will be advantageous to wean off this supplementation as symptoms allow.
for some possible similar guidelines to the rate of weaning while continuing MP see the WEANING FROM STEROIDS doc. You may adjust your MP meds to assist you in holding your symptoms to tolerable.
all best, Barb ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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Vicki SA
Member in Phase 3
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Posted: Tue Mar 7th, 2006 08:04 |
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Thanks for your support Barb.
I will read the things you suggest. I am feeling a lot better tonight and even took the dogs for a short walk in the moonlight. Lovely! Letting the Mino go today has given me the break I needed.
I think I will still drop to 50mg Mino tomorrow and see how I go for the next couple of days.
cheerio
Vicki
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ME/CFS 2000, Splenectomy, 8/05 - 1,25D51,25D16.5, Ph1 12/05, Ph3 1/07, Zoton 40mg, 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: Wed Mar 15th, 2006 22:47 |
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MP day 80 (16/03/06)
Benicar 40mg q8hr started 27/12/05
Minocycline increased to 100mg 16/3/06,(75mg 21/02/06, 50mg 9/2/06, 25mg 13/1/06)
I have increased to 100mg Minocycline this morning. I stayed on 75mg over the long weekend. I had a friend to stay and she has a form of dementia as well as other symptoms from her MS. It was more tiring for me, looking after her and being social and supportive. I was glad that I did it and had one day to help my recovery before going back to work. Although I’m still recovering from it, I think I will feel better to go up a dose on the Mino now.
Cheerio Vicki
8/3/06 reduced to 50mg Mino 1st day in cycle
Broken sleep (5½ hrs)
It was workday and I got through it ok although my back and ribs were very sore by the end of the day.
I came home and went to bed and then got up briefly for tea
9/3/06 reduced to 50mg Mino 2nd day in cycle
Slept well (9hrs in 2 bits)
Had a bath to ease the muscles and then went off to my support group, chiropractor and visited a friend. This is my once a month outing and I covered well and used the K cream.
The amazing part of the day was that I had energy to pop in a few extra things! I went briefly to a couple of shops beforehand and then another on the way to the Chiropractor and then after I had visited my friend I came home and made tea! Granted that I went to bed at 7.30pm having been up since 10am but today was a recovery day after a workday! A very hopeful sign and also confirmation that the drop in Mino gave me the break I needed.
10/3/06 75mg Minocycline 1st day in 7th cycle
Slept ok (6hrs in 2 bits)
I was slow to get moving in the morning and had to push myself but managed my workday alright. I was pretty sore in my back and ribs by the end of the day (all the muscles that hold me upright!).
All in all, not too bad after yesterday’s activity and also went back up to 75mg Mino
I came home and went to bed at 5 and later got up briefly for tea.
11/03/06 75mg Minocycline 2nd day in 7th cycle
Slept like a log! A quiet house helped.
Feeling that I am fine on 75mg Mino again.
Another hot day here 37°C, I was active in the morning (collected a friend who will stay for a few days) and then pretty restful in the afternoon. I made tea and then watched a DVD lying on the bed. I got up later and played my guitar in the moonlight and went to bed about 10.
12/03/06 75mg Minocycline 1st day in 8th cycle
Had broken sleep (6 hrs) due to people moving around in the house rather than herxing. I don’t feel I am getting much herxing on this dose now and will consider going up to 100mg on the next dose.
13/03/06 75mg Minocycline 2nd day in 8th cycle
Broken sleep (7¾ hrs)
Not much to report. I feel like I am having rest days at this level.
Will go up to 100mg after the next dose as I have been overdoing it the last few days, caring for a friend. Took her home today.
14/03.06 75mg Minocycline 1st day in 9th cycle
Slept well (8½ hrs in 2 bits)
Had to see the Optometrist – he seemed unconcerned about my eyes. They seem to be dry and sore and managed ok with some drops (True Tears). I have ordered new glasses and had to check that they would fit under the NoIRs.
Did the food shopping after, came home and put away and then felt really lousy and went to bed. I think this was from the visit to the Optometrist (bright lights in eyes) and my caring role over the weekend. I took some extra Benicar and it helped.
Got up later and made tea and then went to bed early.
15/3/06 75mg Minocycline 2nd day in 9th cycle
Slept ok (7¼ hrs in 3 bits)
Workday – was pretty weary and sore towards the end after the weekend’s caring role.
Came home and was horizontal apart from eating tea.
Getting the cramping/sore calf muscles on this Mino dose, think I will feel better if I go up to 100mg now.
Last edited on Wed Mar 15th, 2006 22:51 by Vicki SA
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ME/CFS 2000, Splenectomy, 8/05 - 1,25D51,25D16.5, Ph1 12/05, Ph3 1/07, Zoton 40mg, 2008 - cover with light r/t Work 3/7, NoIRs, hat, cover well, invis. zinc for outside, low lux home, Sept08 25D - 8
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Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
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Posted: Thu Mar 16th, 2006 00:47 |
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Thanks Vicki
If you would like to be making preparations for Phase 2 by reading and contacting Dr etc, you may wish to send for your Questionnaire as per the FAQs
How do I know if I'm ready for phase two?
Where can I find phase two and three?
all best, Barb ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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Vicki SA
Member in Phase 3
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Posted: Tue Mar 21st, 2006 02:59 |
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MP day 85 (21/03/06)
Benicar 40mg q8hr started 27/12/05
Minocycline - 100mg 16/3/06, (75mg 21/02/06, 50mg 9/2/06, 25mg 13/1/06)
G’day,
I am in my 3rd cycle of 100mg Mino and as seems to happen for me, the herx is really kicking in or wearing me down at the 3rd cycle. This seems to be a good time to ease off, so I may drop back to 75mg tomorrow or let this cycle run to a 3rd day. I am not in a hurry and I plan to try to stop the DHEA (10mg) at this level before moving into Phase 2. I will wait until the 100mg Mino hasn’t got so much bite though before I try to stop the DHEA. I am seeing my GP on the 30th March and hope to get the prescription for the 2nd abx then
Cheerio Vicki
16/3/06 100mg Minocycline 1st day in 1st cycle
Slept well (9½ hrs in 2 bits)
Had little energy or endurance and rested a lot of the day but did play my guitar and picked up my new glasses. Later I made tea.
Sore arms and legs (particularly).
17/3/06 100mg Minocycline 2nd day in 1st cycle
Slept ok (7½ in 2 bits).
Sore especially down the sides of my arms and legs, stomach ache.
Workday – managed alright but pretty sore and dagged by the end of the day. Somehow this is better than the ‘dragging down feeling’ when it is time to move up a dose. Came home and rested on the bed.
18/3/06 100mg Minocycline 1st day in 2nd cycle
Slept pretty well (8½ hrs in 3 bits)
‘Run over by the bus’ herx (along spine and arms and legs).
Weakness in the middle muscles of arms and legs.
Played my guitar later
19/3/06 100mg Minocycline 2nd day in 2nd cycle
Slept well (9½ in 2 bits).
I only moved during the night from squashed muscles – pain! Rested in the morning and had visitors in the afternoon. My back was pretty weary and sore after that. I went to bed early and used the laptop.
20/3/06 100mg Minocycline 1st day in 3rd cycle
Slept well (7¾ hrs in 2 bits)
Workday and managed ok. My back was weary and sore by the end of the day. Came home and went to bed and rested until tea. I was feeling pretty flat really. Resting had eased the back pain but I was really lacking energy and went back to bed after tea.
21/3/06 100mg Minocycline 2nd day in 3rd cycle
Slept well (7¼ hrs in 2 bits)
I woke up feeling pretty sore all over (muscles) and feeling the need to rest and catch up.
I spent the morning in bed and then got up and pottered around in my PJs for a while before getting dressed & K-creamed. After lunch my son drove and we did the food shopping. My legs were heavy and the walking was slow. I came home and rested using the laptop in bed. I am reading a lot in the Phase 2 Forum now.
Last edited on Tue Mar 21st, 2006 03:02 by Vicki SA
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ME/CFS 2000, Splenectomy, 8/05 - 1,25D51,25D16.5, Ph1 12/05, Ph3 1/07, Zoton 40mg, 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 Mar 24th, 2006 02:37 |
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MP day 88 (24/03/06)
Benicar 40mg q8hr started 27/12/05
Minocycline - 100mg 16/3/06, (75mg 21/02/06, 50mg 9/2/06, 25mg 13/1/06)
G’day all,
Well I have had more learning experiences or was that the same ones over again! I sure hope to be able to leave this stuff behind before I go to Phase 2!
Cheerio Vicki
21/3/06 100mg Minocycline 2nd day in 3rd cycle (as prev. posted)
Slept well (7¼ hrs in 2 bits)
I woke up feeling pretty sore all over (muscles) and feeling the need to rest and catch up.
I spent the morning in bed and then got up and pottered around in my PJs for a while before getting dressed & K-creamed. After lunch my son drove and we did the food shopping. My legs were heavy and the walking was slow. I came home and rested using the laptop in bed. I am reading a lot in the Phase 2 Forum now.
Added on 21/3/06 I got up at 5.30 and talked to a friend and then made tea. I watched the News and then played my guitar. I felt so much better! I went to bed at 9. I think I will miss tomorrow’s Mino and take a break. I need to feel better for a while longer!
22/3/06 (extra) 3rd day in cycle
Slept well (8 hrs in 2 bits)
Workday – managed ok, very sore between my ribs fairly early in the day, took extra pain meds, extra Benicar 20mg. I had to drive the car today (instead of the motorbike), so more than usual sun exposure (covered and k-creamed).
Home to bed and rested.
23/3/06 100mg Minocycline 1st day in 4th cycle
Slept well (9 ¾ in 2 bits).
I take the Mino at 5am and then go back to sleep and I woke in pain, ‘run over by the bus’ feeling (spine and arms and legs) with scratchy throat, eyes and headache. I stayed in bed and used the laptop. I got up reasonably early for me (on a recovery day after a work day) at 10.30am and had a bath and washed my hair. I did the tidy up for my cleaner and noticed I was doing it pretty easily especially compared to last time (just over 2 weeks ago). I even had time to make myself some lunch and & play a bit of guitar before the cleaner came! I helped to change the bed and then rested while she cleaned. I got up later and was happily playing my guitar and then decided I would make tea. When I stood up I felt unusually lousy and I decided to rest for a bit. It was only later that I realised that I had missed the last Benicar dose and I was now over 4 hours overdue! Sheesh! I had reset the alarms (watch & phone) and noticed that I had a text message from my son and dealt with that and forgot to take the Benicar! Things went downhill from there, the emotional lability increased markedly. I am not sure what really happens as you lose the inflammatory blockade but I felt like my veins and arteries ached and everything came so unstuck compared to how I had been feeling. It was an emotional roller coaster and so disappointing after feeling on top of things earlier in the day.
24/3/06 100mg Minocycline 2nd day in 4th cycle
Slept well (7¾ in 2 bits)
Still sore all over.
I took the day off work to rest and recover after yesterday’s disaster forgetting the Benicar. I have spent most of the day in bed and with extra Benicar and usual pain relief I am starting to feel better. Hopefully I will feel more on track by tomorrow night!Last edited on Fri Mar 24th, 2006 02:42 by Vicki SA
____________________
ME/CFS 2000, Splenectomy, 8/05 - 1,25D51,25D16.5, Ph1 12/05, Ph3 1/07, Zoton 40mg, 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
inactive member
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Posted: Fri Mar 24th, 2006 02:51 |
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Hi Vicki,
It looks like you're learning lots about how your herx works and what to do for it. This is what we learn in Phase 1 and when missing doses of Benicar; how our bodies react and what the meds are doing for/to us.
ALL GOOD to learn for future reference. 
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Vicki SA
Member in Phase 3
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Posted: Tue Mar 28th, 2006 07:05 |
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MP day 92 (28/03/06)
Benicar 40mg q8hr started 27/12/05
Minocycline - 100mg 16/3/06, (75mg 21/02/06, 50mg 9/2/06, 25mg 13/1/06)
G’day all and thanks for your comments Reenie.
Lately as I have been reading more in the Phase 2 & 3 Forum I have realised little things that have been happening that I hadn’t necessarily put down to herxing. Things like having a stuffy nose where you feel like the walls have become a bit thicker, and then at a different time also a runny nose needing blowing more often. Another little thing, is feeling like I am getting a pimple on the end of my nose. I can actually feel the spot, with my fingernail but no pimple comes. And more on the skin – itching down the front of my shins. I have actually been shaving my legs more often because it is itchier when the hair is longer. Anyway all good to realise!
Cheerio Vicki
25/03/06 100mg Minocycline extended to 3rd day in 4th cycle
Slept very well (10 hours in 2 bits)
Woke with burning muscles and a headache and decided to let the Mino run another day and let the Benicar blockade re-establish. I had a reasonable if not terribly active day (another hot day here). No noticeable herxing as the day progressed. I am feeling back on track now and ready to go on with the Mino tomorrow.
26/03/06 100mg Minocycline 1st day in 5th cycle
Slept well (8½ hrs in 3 bits)
I woke with a headache, dry, sore eyes and the ‘run over by the bus’ feeling down my spine. Later I felt I had immune response symptoms (scratchy eyes, throat, ears, armpits) as well as burning leg and arm muscles.
My activity level was pretty low but I played my guitar for a bit and later did the preparations for tea.
Went to bed early and watched the closing of the Commonwealth Games.
27/03/06 100mg Minocycline 2nd day in 5th cycle
Slept ok (6½ hrs in 2 bits).
Symptoms generally lower today although I was sluggish to get going and arrived at work feeling washed out. I was better once I got settled and distracted. Later I was getting the usual sore back and muscles between the ribs by about 12, took the next dose of Benicar & also pain meds at 1pm and started to feel better as the afternoon wore on. I finished my workday about 5pm feeling amazingly good! The pain was still under control and I felt ‘light’ compared to how I usually feel at the end of a workday. I assume the herxing was waning and I guess all the resting over the weekend helped. I came home and rested for an hour before tea anyway! My lower legs were uncomfortable and I used my percussion massager and was then amazed at how sore all my muscles (all over my body) were! I got up for tea and felt quite weary. That was certainly a ‘mixed bag’ of feelings about the day LOL. I went to bed at 8.30.
28/03/06 100mg Minocycline 1st day in 6th cycle
Slept well (9 hours in 2 bits)
I woke feeling sore all over, skin sore I guess, is the best description. I was awake for 2 hours and then slept again for another 2.
I got up about 11 and had a shower and lunch and then went food shopping with my son. I felt that my muscles were very heavy and lacking endurance, a bit like being ‘hung over’ in your whole body! I am wondering if this is the after effect from stopping the Transfer Factor (ceased 2/3/06) or perhaps just herxing at this level of Mino or even from using the massager. I am hoping to stop the DHEA before moving into Phase 2 but I will need to feel better than this to consider doing it. I made tea later and played my guitar briefly and went to bed at 8.Last edited on Tue Mar 28th, 2006 07:07 by Vicki SA
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ME/CFS 2000, Splenectomy, 8/05 - 1,25D51,25D16.5, Ph1 12/05, Ph3 1/07, Zoton 40mg, 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: Tue Mar 28th, 2006 18:54 |
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I am wondering if this is the after effect from stopping the Transfer Factor (ceased 2/3/06) or perhaps just herxing at this level of Mino or even from using the massager.
Vicki,
IMO, all 3 have prob had some effect on herx. I would just continue to keep track like you're doing, of these subtle changes for future reference. They may help you make adjustments if/when you need to, as you get further along.
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Vicki SA
Member in Phase 3
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Posted: Fri Mar 31st, 2006 23:08 |
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MP day 95 (31/03/06)
Benicar 40mg q8hr started 27/12/05
Minocycline - 100mg 16/3/06, (75mg 21/02/06, 50mg 9/2/06, 25mg 13/1/06)
Questions! My GP has advised that my potassium is 6.3 and dangerously high and I am at risk of my heart stopping. He has prescribed Hydrochlorothiazide 25mg/day and I am having another blood test in 3 days to check it has come down. I can’t seem to find info about potassium but I know that on Telsmartan tablets (I never actually took this medication) there were warnings about potassium and taking supplements. Are there similar warnings about Benicar/Zotum? I was eating a banana a day and have now stopped that and don’t think there is any potassium in anything that I’m taking, nothing mentioned on the Magnesium or zinc supplements. Any advice welcome!
Today I have let the Mino go for a 3rd day and didn’t take the Magnesium or Zinc supplements last night to be sure!
I am also scheduled to have a skin cancer removed from my face on 4/4/06. It is probably a basel cell carcinoma and I will have a local anaesthetic in the GP’s surgery. Anything I need to know about medications to avoid?
TIA, Cheerio, Vicki (who is feeling fine despite risk of heart stopping)
29/03/06 100mg Minocycline 2nd day in 6th cycle
Slept well (8 hrs in 2 bits)
I woke feeling stiff and sore, like my muscles were unlubricated. I have a waterbed and I realised that it is a bit cold so that may be adding to my problems.
Today was a workday and my back and ribs were sore by late morning. That is the lack of endurance I have at present. I took the Benicar early and it did help. I made it to the end of the day and came home and rested an hour of so before tea. I was up for about an hour and then went to bed about 8 and used the massager. The bed is warmer tonight so I’m hoping that will help!
30/3/06 100mg Minocycline 1st day in 7th cycle
Slept like a log (10½ hrs in 2 bits). The bed was warmer and that helped!
My muscles felt better although still sore around my knees and elbows (not at all unusual). Stiffness and lack of endurance in my muscles may well be a herxing symptom but it is somehow scarier than just plain soreness. It makes you feel weaker and wondering if your ability is slipping away. Time will tell!
I saw my CFS GP and he ordered tests to check on things:
FBE, ESR, E/LFTs, Fibrinogen, DHEAs levels, Zinc level, Vit D3, 1,25di(io)D3
He also precribed the Phase 2 md
I came home and made tea and then went to bed at 7.
31/3/06 100mg Minocycline 2nd day in 7th cycle
Broken sleep (5½ hrs in 2 bits)
Felt ok and had a bath to get moving and I think my muscles are feeling better. It was a workday with a very busy morning. I had to go to a meeting (requiring car travel) and I wore a thick hooded windcheater. I had a racing heart and started to blackout at lunchtime (before the meeting). I think I was a bit hot with hat and thicker clothing; it passed anyway. Went to the meeting and had an urgent call from my GP. The blood test showed dangerously high potassium levels (as well as low sodium) and my heart could stop! He advised stopping the Benicar but was willing to work with me and prescribed Hydrochlorothiazide 25mg 1/day to bring the potassium levels down. I collected it on the way home and took the first one. I will have another blood test on Monday to check. Came home, chatted with a friend and did some tea preparations & Hubby cooked it. Went to bed about 8.
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ME/CFS 2000, Splenectomy, 8/05 - 1,25D51,25D16.5, Ph1 12/05, Ph3 1/07, Zoton 40mg, 2008 - cover with light r/t Work 3/7, NoIRs, hat, cover well, invis. zinc for outside, low lux home, Sept08 25D - 8
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Aussie Barb
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Posted: Fri Mar 31st, 2006 23:26 |
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Vicki
Here is a list of foods high in potassium to avoid. FAQ My potassium is elevated. What should I do?
re the Hydrochlorothiazide, see MEDICATIONS TO AVOID ON THE MARSHALL PROTOCOL
Persons with Th1 inflammation may have occult kidney inflammation. Thiazide diuretics are hard on the kidneys.
Please read: Paul J. Rosch: Diuretics and Diabetes
Hydrochlorothiazide (HCT) is too hard on the kidneys and liver, and these are organs were people with Th1 disease may have undetected problems. You can read the precautions about HCT on the internet drug index.
There are alternative diuretics. If you need a diuretic, ask your doctor to order one that does not spare potassium such as furosemide (Lasix).
Why do I have to stop taking supplements? Your doctor will consider the risk/benefit ratio and use follow up tests as s/he manages your treatment plan.
My kidney function tests are worse since I started the MP. What should I do?
Please begin a progress report in the Phase 2 forum to discuss your Phase 2 meds. thanks. Why isn't the entire Marshall Protocol posted on the website?
re surgery: I need to have surgery. What should I know about anesthesia and the Marshall Protocol?
Why do I need to ask for a local anesthetic without epinephrine? You, your Dentist and your Surgeon need to know.
in case I need to take a different antibiotic for awhile. What should I do?
PAIN CONTROL
all best for all you have going, Barb ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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Reenie
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Posted: Sat Apr 1st, 2006 03:36 |
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The blood test showed dangerously high potassium levels (as well as low sodium)...
Vicki, I'm not exactly sure how these two are connected, but I always thought it was important to have a good sodium/potassium balance in the body. What is the Dr suggesting for your low sodium?
... prescribed Hydrochlorothiazide 25mg 1/day to bring the potassium levels down.
Won't taking a diurectic cause you to lose more sodium too? Maybe someone here has some additional info for you on this, but I know you can increase sodium intake which might help the balance too.
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Vicki SA
Member in Phase 3
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Posted: Sun Apr 2nd, 2006 03:18 |
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Thanks for that Reenie.
The GP did recommend taking salt as well but I was a bit concerned about making sure that say, salt tablets didn't have potassium in them as well. So I have gone for the salty food option and then realised that the stuff I sprinkled on probably wasn't a safe bet either, being vegetable and sea salt. I figured sea salt might possibly have more minerals in it. Oh well I will ask the clinic nurse when I have the blood test tomorrow LOL.
I am hoping that taking the diuretic is only a short term thing and will provide my GP with the info suggested in Barb's previous post.
Cheerio Vicki
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ME/CFS 2000, Splenectomy, 8/05 - 1,25D51,25D16.5, Ph1 12/05, Ph3 1/07, Zoton 40mg, 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: Sun Apr 2nd, 2006 17:16 |
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Vicki,
Sea salt is supposed to be a good choice from all that I've read, containing natural trace minerals. (magnesium is one of them) I never heard of it being a problem with potassium, but you can check, maybe Google it. I'm not sure the nurse or the Dr would know about sea salt unless they're savvy on more natural alternatives.
BTW, if you feel you must take a diurectic, the one you were given is in the class of diurectics extremely hard on the kidneys. I'm not familiar with the alternatives, but there should be another type you can take since your lab tests appear to indicate kidney inflammation has been revealed by the MP.
Last edited on Sun Apr 2nd, 2006 17:22 by Reenie
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