 |
| Author | Post |
|---|
AussieCraigO
Member in Phase 1
| Joined: | Mon Jan 14th, 2008 |
| Location: | Sydney, Australia |
| Posts: | 16 |
| Status: |
Offline
|
|
Posted: Wed Feb 20th, 2008 04:03 |
|
Test results post
As stipulated in your response dated 16/1/08 to my posting in the preliminary test results forum, I am posting in the Benicar Only Forum just prior to starting phase 1.
I agree with the inclusion criteria for participation in ARF phase 2 clinical study of the Marshall Protocol required for participation in your study and counselling on this site.
Tomorrow I will be receiving a heart examination from my doctor as part of the preliminary tests and information he is gathering prior to taking Benicar.
My biggest concern at this stage is in relation to "Weaning off Steroids". I have read and perused thoroughly the information that you have provided but realise that this is only a rough guide especially in relation to dosages as the steroid you have used is presidone, not DHEA which I am on. I am currently on a 150g dose and my doctor has provided me with a perscription for 100g for the next 30 days to be taken in conjunction with the Benicar.
I anticipate that I will begin taking all of this starting Monday next week as the prescription for DHEA will take a while to fill for the 100g (as it is a compounding chemist).
I have thoroughly examined what I should be doing under phase 1 guidelines and all other relevant material and believe I am ready to start.
I am confused about whether I should make a weekly posting in this forum or in the Weaning off Steroids Forum as both seem to require me to post weekly at this stage. Some clarification on this would be appreciated.
____________________
CFS anxiety depression food intolerances insomnia 125D70 Ph1 Feb08 weaning DHEA probiotics NOIRs limited outings covered up low lux home 25D9
|
Meg Mangin R.N.
Research Team
|
Posted: Wed Feb 20th, 2008 07:24 |
|
Hi Craig, your post has been moved to the weaning forum.
Thanks for letting us know you will be starting Benicar to help you wean from DHEA. It looks like your doctor has provided you with guidance regarding the weaning process. DHEA usually takes less time to wean then prednisone. You may wean as rapidly as symptoms allow.
Please go over items on this checklist. Be sure to inform study site Staff of all medications and supplements (both Rx and OTC) you are taking.
Please familiarize yourself with the information threads pinned to the top of this forum so you will know where to find answers to commonly asked questions.
During this initial stage of your MP journey is a good time to review these materials:
Phase One Guideline (print it out so you can refer to it often)
How does Benicar work?
Benicar dosage and schedules
I just started Benicar. Why do I feel worse? What should I do?
How long should I stay on Benicar? Why don't I feel better? When should I start minocycline?
What should I do if I need to take a non-MP antibiotic?
It's a good idea to get in the habit of charting your symptoms.
You will have a lot of hormonal adjusting going on as the Benicar blockade dramatically reduces 1,25-D. See Hormonal changes resulting from changes in 1,25D-hydroxyvitamin-D.
It's important to avoid natural light exposure and bright light falling on the eyes during this time by eliminating all avoidable daylight outings, wearing NoIRs, lowering artificial home lighting to 30 Lux and covering up well when you do have to go out. See Why does exposure to natural light increase symptoms? and What precautions should I take when I must go out?
Let us know how it goes......
|
AussieCraigO
Member in Phase 1
| Joined: | Mon Jan 14th, 2008 |
| Location: | Sydney, Australia |
| Posts: | 16 |
| Status: |
Offline
|
|
Posted: Wed Mar 5th, 2008 23:08 |
|
Thanks Meg for your prompt response to my previous post.
MP Meds
I have been taking 40mg Olemetec (Benicar) since Thursday 28/2/08 as follows:
Thursday 28/2/08 - 8:20am, 3pm, 10:10pm
Friday 29/2/08 - 6:15am, 12:15pm, 6:10pm, 12am
Saturday 1/3/08 - 8am, 3pm, 11:11pm
Sunday 2/3/08 - 7:50am, 2:50pm, 10:05pm
Monday 3/3/08 - 6am, 12pm, 6pm, 12am
Tuesday 4/3/08 - 8:30am, 3pm, 10:50pm
Wednesday 5/3/08 -7:25am, 3:15pm, 9:30pm
Non MP pallative med use: none
Natural Light Exposure:
Thurs 28/2 - approx 25 mins of natural light exposure driving - picking up son from school & to & from shops (indoor mall)
Fri 29/2/08 - approx 10 mins exposure driving to pick up son from school
Sat 1/3/08 - approx 5 mins exposure for external painting quote
Sun 2/3/08 - approx 5 mins exposure driving & dropping off wife & son @ church
Approx 1.5 hours exposure driving to and from city to visit museum for several hours
Mon 3/3/08 - approx 15 mins exposure driving to and from lunch with friends
Approx 20 mins exposure driving to gym attached to hospital for stretching exercise session with exercise physiologist
Tues 4/3/08 - approx 45 mins driving exposure running errands incl Olemetec prescription refill
Wed 5/3/08 - approx 10 mins driving exposure picking up son from school & 15 mins driving exposure to do grocery shopping at local shops/mall.
Symptoms: none of the symptoms to date have been intolerable
Comments: This is my first progress report so forgive me if it is long. There are a few things I want to address as I adjust to the MPs requirements.
For the first few days taking Olemetec symptoms appeared that were not apparent before such as nausea, giddiness, mild headaches, but these seem to have dissipated.
I have been quite fatigued and needing good rest/sleep period in the morning and afternoon but this is hardly different from pre MP meds with my CFS. I will take better notice in the future of your advice to only go on outside excursions when necessary. I required extra rest for a few days following the long excursion out with my family on Sunday when I went to the museum for several hours and experienced around 1.5 hours of sunlight exposure driving.
Since first using the NOIRs a week and a half prior to commencing Olemetec I have noticed that soreness around and behind my eyes has disappeared. My eyes were very sensitive for the first few days post Olemetec but have seemed to calmed down now. I have noticed that looking into lights, sometimes unavoidable in the bright lighting of shopping malls causes my eyes to ache and a throbbing pain behind the eyes to start, accompanied by nausea with prolonged exposure. There is one shop I go to to get groceries where I can only spend around 15 mins in there before this starts.
I use my 2% NOIRs almost all the time, even indoors, except when I need to do tasks that require more visibility such as reading or using a knife (10%). I spend a fair amount of time at home in front of a laptop screen with my 2%. I spend arround 70-80% of my time in 2 rooms at home during daylight hours.
The study I use with the laptop is very dark during the day and the only lighting I am using is a 2V Halogen lamp that I shine towards the wall. The resulting backlight gives me just enough light to view the keyboard with my 2% NOIRs. The bedroom is lighter due to its northerly position. It seems still sufficiently dark and I have placed an uplight in the north eastern corner of the room. Although I have not purchased a lux meter I have examined several websites to guage what is 30 lux and am confident that these 2 rooms are suitable.
The other rooms downstairs in the house are definitely not to my requirements as they have vertical blinds. Uplights have been placed in the corners of these rooms for my use. A compromise has been required for these rooms partly due to my wife's poor eyesight. In summary I am confident that during the day I am in 30 lux rooms for 70-80% of the time that I am at home. Nightime I am almost always in rooms where the 30 lux would be met.
I believe that I have met the MPs lighting requirements as best as I can.
I have perused all of the information on diet/food and will continue to do so. My biggest issue at the moment appears to be lack of variety at breakfast. Also I seem to be eating too much red meat. And although I have done well with the snacks, I am still a little concerned when the season ends and there are little or no more berries, stone fruits and melons. I have been on restricted diets before due to my issues with food inolerances and malabsorption in the past, so I have adjusted reasonably well. However as a suggestion it would be great for a dietician out there to devise some sample menus, say over a couple of weeks, to give me and others some ideas and to spark creativity.
I am conscious of the advice to eat until only 80% full and find that for me the best way of eating is to have 3 meals and 2 snack periods between. I always get hungry at morning and afternoon tea regardless of the amount I consume around "normal" meal times.
Finally today, Thursday 6/3/08 I have reduced my DHEA dosage to 100mg from 150mg. I intend to keep it on this dosage until the next review in just over 3 weeks with my doctor on Friday 28/3/08. I have been on mostly 150mg of DHEA since around June 2006.
Thanks in advance.
____________________
CFS anxiety depression food intolerances insomnia 125D70 Ph1 Feb08 weaning DHEA probiotics NOIRs limited outings covered up low lux home 25D9
|
Meg Mangin R.N.
Research Team
|
Posted: Thu Mar 6th, 2008 01:29 |
|
Thanks for the thorough report, Craig. You are doing a a good job of avoiding light to minimize symptoms.
Food Facts has lists of foods you can eat. Food Tips has many helpful hints from members. This new website started by a member has MP safe recipes.
Keep up the good work.........
|
AussieCraigO
Member in Phase 1
| Joined: | Mon Jan 14th, 2008 |
| Location: | Sydney, Australia |
| Posts: | 16 |
| Status: |
Offline
|
|
Posted: Thu Mar 13th, 2008 01:17 |
|
Week 2 of the MP. DHEA reduced from 150g to 100g starting Thursday 6/3/08. DHEA dosage to be reviewed on Friday 28/3/08 at next doctor's appointment.
MP Meds
I have been taking 40mg Olemetec (Benicar) as follows:
Thursday 6/3/08 - 6:10am, 12:05pm, 6:05pm
Friday 7/3/08 -12:00am, 7:15am, 2:35pm, 10:25pm
Saturday 8/3/08 - 6:30am, 12:50pm, 6:55pm,
Sunday 9/3/08 - forgot nightime dose (early am), 8:25am, 3:50pm, 10:30pm
Monday 10/3/08 - 6:30am, 12:10pm, 6:25pm
Tuesday 11/3/08 - 12:05am, 8:05am, 3:40pm, 10:35pm
Wednesday 12/3/08 -6:40am, 12:45pm, 6:45pm
Non MP pallative med use: Saturday 8/3/08 around 12:30am took melatonin 3g with chamamoille tea in attempt to relieve insomnia, poor sleep suffered over several nights.
Natural Light Exposure:
Thursday 6/3/08 - 15 mins driving exposure return from local indoor shopping mall. 5 mins outside getting external painting quote. 5 mins outside walking to post letter and back.
Friday 7/3/08 - 5 mins around dawn outside with painter for external paint quote. 10 mins outside for external paint quote. 10 mins return drive to pick up son from school. 45 mins gardening pre sundown. 15 mins drive & outside walk to pick up takeaway dinner @ dusk/dark.
Saturday 8/3/08 - 35 mins outside play with son @ dusk, pre sundown.
Sunday 9/3/08 - 15 mins return drive to church & 1 hour exposure to natural light, fluoros inside church. 15 mins walk around dusk
Monday 10/3/08 - 20 mins return drive to lunch with friends (approx 1 hr 15mins) low natural & artificial light. 20 mins return drive to 1 hour gym session @ rehab hospital gym (stretching, strenghtening exercise program approved by doctor & overseen by exercise physiologist). 10 mins walk @ dusk.
Tuesday 11/3/08 - approx 25 mins exposure driving around doing errands ( most errands @ inside shopping mall). 10 mins return drive to pick up son from school. 15 mins exposure driving to pick up wife from train station. Approx 25 mins exposure playing with son in backyard around dusk.
Wednesday 12/3/08 - Approx 25 mins exposure driving to pick up son from school & going shopping @ indoor mall.
Symptoms:
Significant insomnia, poor sleep for 4 nights from Tuesday 4/3/08 to Friday 7/3/08 lead to taking of melatonin, chamamoille tea mentioned above to try and relieve symptoms. Unsuccessful but on Saturday night 8/3/08 had good sleep through to Sunday 9/3/08 by instigating a thorough pre bed routine devised recently with a psychologist I am currently seeing to takcle insomnia problem.
Saturday 8/3/08 had problems with splitting headache post taking a dose of Olemetec and then immediately running around for around 35 mins outside pre dusk with son. Headache entailed severe throbbing at back of head behind ears and required immediate bed rest for around 45 minutes. It dulled to a tolerable low throb post bedrest and eventually dissipated around 1 hour later.
From around Tuesday 4/3/08 junction of roof of mouth, top front left incisor tooth & top front left tooth very sore. I was forced to eat from right corner of mouth for several days only. Finally pain started easing around Saturday 8/3/08 and appears gone now.
Post church visit on sunday 9/3/08 felt quite ill, nauseous, requiring immediate bedrest for around 30-45 mins.
Comments:
The challenges for the week were outlined in the symptoms section. Currently feeling pretty good.
Thanks in advance.
____________________
CFS anxiety depression food intolerances insomnia 125D70 Ph1 Feb08 weaning DHEA probiotics NOIRs limited outings covered up low lux home 25D9
|
Meg Mangin R.N.
Research Team
|
Posted: Thu Mar 13th, 2008 02:01 |
|
Craig, you are taking the minimum dose of Benicar. Recommend you increase to every six hours to try to prevent the spike in symptoms. See Benicar dosage and schedules
If symptoms are approaching intolerable, assess your natural light exposure, assess your symptoms and use your personal tool kit to be sure symptoms are not due to other factors besides immunopathology (sun exposure, lack of rest, exercise, diet, etc) that can be modified to reduce symptoms asap.
The recommended first step when symptoms have gone past tolerable is to increase Benicar. Do not wait. Take an extra oral 40mg immediately. A hot drink (sugar-free chocolate or weak tea) will help the pill reach the stomach quickly.
Chewing the tablet and placing it under the tongue will promote faster absorption and quicker symptom relief. See How to make Benicar act faster.
If an extra oral or sublingual dose of Benicar does not work, do not assume that increasing Benicar to every 3-4 hours will not work.
If intolerable symptom/s persist, increase oral 40mg Benicar to every three or fours hours around the clock (set an alarm and use a dosette to avoid error). Continue until symptoms are tolerable.
During a 'crisis' situation, an extra 20mg of Benicar may be taken sublingually with each every three or four hour oral Benicar dose. This is especially important for folks who have GI tract inflammation.
If increasing Benicar does not reduce intolerable symptoms enough, please consult a moderator.
As always, if our information does not provide the answer for you (be sure to click on all the links), please ask before you take action.
Continue all supportive measures....light avoidance, rest, good nutrition, adequate hydration, palliative meds as needed.
You're doing a good job.......
|
AussieCraigO
Member in Phase 1
| Joined: | Mon Jan 14th, 2008 |
| Location: | Sydney, Australia |
| Posts: | 16 |
| Status: |
Offline
|
|
Posted: Thu Mar 20th, 2008 23:40 |
|
Week 3 of the MP. DHEA reduced from 150g to 100g starting Thursday 6/3/08. DHEA dosage to be reviewed on Friday 28/3/08 at next doctor's appointment.
MP Meds
I have been taking 40mg Olemetec (Benicar) as follows:
Thursday 13/3/08 – 12;25am, 8:05am, 4:20pm, 8:50pm
Friday 14/3/08 - 12:05am, 7:45am, 11:15am, 2:35pm, 5:10pm, 7:40pm
Saturday 15/3/08 - 12am, 5:50am, 9:35 am, 1pm, 5:15pm, 9pm
Sunday 16/3/08 - 1:25am, 8:45am, 12pm, 6pm, 9:45pm
Monday 17/3/08 - 3am, 7:15am, 10:10am, 2:25pm, 7:30pm, 11:05pm
Tuesday 18/3/08 - 2:35am, 6:35am,10:50am, 5pm, 8:55pm
Wednesday 19/3/08 – 12:25am, 7:35am, 12:50pm, 6:50pm, 9:10pm
Non MP pallative med use: Took 3 Quickeze antacid tablets around 3am Monday 17/3/08 to attempt to moderate severe GI tract inflammation, stomach ache
Natural Light Exposure:
Thursday 13/3/08 – NIL
Friday 14/3/08 - 10 mins drive to pick up son from school
Saturday 15/3/08 - NIL
Sunday 16/3/08 - Approx 30 mins with son in backyard
Monday 17/3/08 - Approx 25 mins sun exposure picking up son from school. Approx 45 mins sun exposure taking son to specialist doctor's apt. Pick up son from school - approx 15 mins sun exposure.
Tuesday 18/3/08 - Approx 25 mins sun exposure taking son to school. Approx 10 mins sun exposure driving to indoor mall. Approx 15 mins sun exposure to & from school, collecting son.
Wednesday 19/3/08 – Approx 15 mins driving exposure to & from 1 hour medical appointment. 10 mins driving exposure - school pickup. 20 mins neighbourhood walk @ sundown
Symptoms and comments:
The week was easily the toughest week for me to date. The lack of sun exposure from Thursday – Sunday was due to a need for significant bed rest at a time when symptoms were most severe.
Initial symptoms which developed from Thursday onwards consisted of stomach cramps and aches, diarrhea, reflux, GI tract inflammation. As these symptoms worsened, especially on Friday and Sunday brain fog, concentration problems and debilitating fatigue began to take over. Insomnia, disturbed sleep was common throughout the week.
It seems to me that an initial trigger for the symptoms was a Chinese lunch I had with my wife at a restaurant on Wednesday 12/3/08. This was despite trying to be very careful in what I ordered (eg no fish or soy sauces, no rice). I will no longer be eating at any Asian restaurant because there is no way to know what nasties, such as MSG, are lurking in the food no matter how carefully you order (and I thought I had been very careful).
Thursday evening I had a meal made at home by my wife of stir fry vegetables in a Thai green Penang sauce which took these symptoms to a whole higher level of discomfort and pain. Again Asian food.
I realize that I have made matters harder for myself by not following to the letter the instructions from Meg’s reply to my previous post. Although I did reduce the intervals between dosages as instructed, I now realize I did not follow her instructions regarding sublingual dosages.
To quote:
“During a 'crisis' situation, an extra 20mg of Benicar may be taken sublingually with each every three or four hour oral Benicar dose. This is especially important for folks who have GI tract inflammation. “
I will be following this to the letter in the future. I did notice that the more frequent dosages I took did gradually help reduce severity of symptoms along with peppermint tea and the antacid tablets I took.
Symptoms gradually eased and improved from Monday 17/3/08 onwards.
I probably do need to find better/further palliative measures than what I currently have for stomach/GI tract problems and insomnia.
Thanks again for your support to date.
____________________
CFS anxiety depression food intolerances insomnia 125D70 Ph1 Feb08 weaning DHEA probiotics NOIRs limited outings covered up low lux home 25D9
|
Meg Mangin R.N.
Research Team
|
Posted: Fri Mar 21st, 2008 00:39 |
|
Craig, I'm sorry eating Asian food caused you so much trouble.  Others have reported this also.
Keep up the good work.........
|
AussieCraigO
Member in Phase 1
| Joined: | Mon Jan 14th, 2008 |
| Location: | Sydney, Australia |
| Posts: | 16 |
| Status: |
Offline
|
|
Posted: Thu Mar 27th, 2008 03:49 |
|
Week 4 of the MP. DHEA reduced from 150g to 100g starting Thursday 6/3/08. DHEA dosage is to be reviewed tomorrow Friday 28/3/08 at doctor's appointment.
MP Meds
I have been taking 40mg Olemetec (Benicar) as follows:
Thursday 20/3/08 – 2am, 8am, 12:40pm, 5:40pm, 9:40pm.
Friday 21/3/08 - 7:00am, 8:05am, 12:15pm, 5:25pm, 10:20pm.
Saturday 22/3/08 - 6:00am, 12:15pm, 5:20pm, 11pm
Sunday 23/3/08 - 5:00am, 10:50am, 4:50pm, 9:40pm
Monday 24/3/08 - 4:45am, 11:05am, 5:50pm, 9:30pm
Tuesday 25/3/08 - 6:45am, 12:30pm, 4:45pm, 8:30pm
Wednesday 26/3/08 – 3am, 8:15am, 12:35pm, 5:50pm, 9:30pm
Non MP pallative med use: 3g of Melatonin taken 9:40pm Thurs 20/3/08 and Saturday 22/3/08 to help relieve insomnia. They helped me to sleep better and assist with recovery from the previous very tough week.
Natural Light Exposure:
Thursday 20/3/08 – Ran errands around shops - 45 mins driving exposure, 45 mins indoors. Pick up relatives from railway station - approx 15 mins driving. 15 mins neighbourhood stroll @ dusk.
Friday 21/3/08 - NIL
Saturday 22/3/08 - NIL
Sunday 23/3/08 - 15 mins sun exposure
Monday 24/3/08 – 10 mins sun exposure driving & 1.5 hours indoor shopping mall. Walk around dusk - approx 15 mins.
Tuesday 25/3/08 – 30 mins approx sun exposure - son drop off to school, petrol refill. Pick up son from school- sun exposure approx 15 mins. Pick up wife from train station - approx 15 mins.
Wednesday 26/3/08 – 10 mins driving exposure 4 lunch with friend in darkly lit club.
40 mins outside pre dusk with son in backyard.
Symptoms and comments:
This was a good week that improved as it went along. I still had problems with insomnia and mild stomach cramps, diarrhea and GI tract inflammation. But they improved significantly as the week went on. Also the various measures I mentioned in this and previous posts seemed to help. The regime of trying to take Olemetec at least every 6 hours, usually every 4-6 hours seems to be working well. I do think that some of the symptoms mentioned and CFS symptoms are often reduced upon taking Olemetec and now regard it as the first measure I should think about when symptoms arise (especially when there is no obvious breaking of protocol measures such as excessive natural light exposure or food triggers).
Also I seem to be managing my fatigue well via bed rest during the day when needed. I need bed rest at least once a day during the day for at least a short period and I appreciate going to bed prior to 10pm. This seems to help me feel and be at my optimum.
Thanks again and hope you had a good Easter!
____________________
CFS anxiety depression food intolerances insomnia 125D70 Ph1 Feb08 weaning DHEA probiotics NOIRs limited outings covered up low lux home 25D9
|
Meg Mangin R.N.
Research Team
|
Posted: Thu Mar 27th, 2008 04:18 |
|
Craig, you are managing well by increasing Benicar when symptoms escalate towards intolerable.
Hopefully, your doctor will allow you to decrease DHEA a little faster so you can get started on the protocol.
Nice work.............
|
AussieCraigO
Member in Phase 1
| Joined: | Mon Jan 14th, 2008 |
| Location: | Sydney, Australia |
| Posts: | 16 |
| Status: |
Offline
|
|
Posted: Thu Mar 27th, 2008 07:15 |
|
Meg,
Would a reasonable weaning schedule to suggest be 50mg of DHEA for 2 weeks, 50mg every other day for 2 weeks and then ceasing?
____________________
CFS anxiety depression food intolerances insomnia 125D70 Ph1 Feb08 weaning DHEA probiotics NOIRs limited outings covered up low lux home 25D9
|
Meg Mangin R.N.
Research Team
|
Posted: Thu Mar 27th, 2008 07:22 |
|
| Craig, that looks like a reasonable pace, as always, depending on tolerable symptoms.
|
AussieCraigO
Member in Phase 1
| Joined: | Mon Jan 14th, 2008 |
| Location: | Sydney, Australia |
| Posts: | 16 |
| Status: |
Offline
|
|
Posted: Thu Mar 27th, 2008 08:33 |
|
Thanks Meg,
I'll suggest this to the doctor tomorrow.
Cheers.
____________________
CFS anxiety depression food intolerances insomnia 125D70 Ph1 Feb08 weaning DHEA probiotics NOIRs limited outings covered up low lux home 25D9
|
AussieCraigO
Member in Phase 1
| Joined: | Mon Jan 14th, 2008 |
| Location: | Sydney, Australia |
| Posts: | 16 |
| Status: |
Offline
|
|
Posted: Wed Apr 2nd, 2008 05:52 |
|
Meg,
I went to the doctor last Friday and the weaning schedule he advised was:
75mg - 2 weeks
50 mg - 2 weeks
25 mg - 2 weeks
This is the minimum because he wants me to shift down only after a week of tolerable symptoms. I am scheduled to see him again in around a month and a half and we'll take it from there. I'm happy enough with this.
Also he provided me with a script for Pariet which he stated is not contraindicated on the MP for pallative relief of reflux and overacidity. I also have some OTC meds for the same problem both chewable tablets:
Quickeze - 780mg Calcium Carbonate, 130mg Magnesium Carbonate, 130mg Magnesium Trislilate per tablet
Mylanta P Antacid - 200mg Aluminium Hydroxide Dried, 200mg Magnesium Hydroxide, Simethicone 20mg, Mannitol (2.88g/24 tablets).
I suspect that the Quickeze is contraindicated because it contains Calcium Carbonate. The Mylanta P claims to treat a greater range of symptoms all of which I have so this may be OK.
Anyway stomach, GI tract related disorders are my biggest concern in managing my condition as they have flared up with the dosages of Olmetec and I am seeking better ways to manage this.
Cheers
Craig
____________________
CFS anxiety depression food intolerances insomnia 125D70 Ph1 Feb08 weaning DHEA probiotics NOIRs limited outings covered up low lux home 25D9
|
AussieCraigO
Member in Phase 1
| Joined: | Mon Jan 14th, 2008 |
| Location: | Sydney, Australia |
| Posts: | 16 |
| Status: |
Offline
|
|
Posted: Thu Apr 3rd, 2008 00:12 |
|
Week 5 of weaning. DHEA reduced from 150g to 100g from Thursday 6/3/08 to Wednesday 2/4/08. Weaning schedule advised in previous post. I started 75mg today, Thursday 3/4/08.
MP Meds
I have been taking 40mg Olemetec (Benicar) as follows:
Thursday 27/3/08 – 3am, 7:55am, 1:15pm, 6:15pm, 11:05pm
Friday 28/3/08 - 5:25am, 10:30am??, 12:15pm, 1:25pm, 7:25am
Saturday 29/3/08 - 4:45am, 10:15am, 1:50pm, 5:30pm, 10:50pm
Sunday 30/3/08 - 5:30am, 11:40am, 4:25pm, 9pm, 11:08pm
Monday 31/3/08 - 4:30am, 10:15am, 3:15pm, 6:40pm, 11pm
Tuesday 1/4/08 - 4:35am, 4:55am (SUB), 11:05am, 4pm, 9pm
Wednesday 2/4/08 – 5:15am (sub), 7:45am, 12:45pm, 5:45pm, 9:55pm
Non MP pallative med use: 3g of Melatonin taken Saturday 29/3/08 & Monday 31/3/08 to help relieve insomnia. They helped me to sleep better and assist with recovery from a few difficult days from Friday-Monday.
Natural Light Exposure:
Thursday 27/3/08 – Approx 40 mins sun exposure taking son to & from school
Friday 28/3/08 – Approx 20 mins exposure dropping son off to school & 20 mins exposure driving to & from doctor’s appointment. Approx 30 mins exposure with son after school.
Saturday 29/3/08 - NIL
Sunday 30/3/08 – 1.5 hours exposure attending son sports session
Monday 31/3/08 – 1.5 hours sun exposure dropping son off @ school & return from trip to shops. 10 mins sun exposure picking up son from school & traveling to indoor mall.
Tuesday 1/4/08 - Approx 1.5 hours sun exposure involving dropping off son to school and shopping. Pick up son from school - approx 20 mins. Play with son outside - approx 30 mins around dusk.
Wednesday 2/4/08 – Outside with neighbour, arranging driveway high pressure clean - approx 20 mins
There was more sun exposure this week although most of it was due to necessary shopping trips – eg groceries, MP drugs, necessary family duties. I seem to have far less sensitivity to light as far as my eyes are concerned.
Symptoms and comments:
I had a flare up of symptoms on Friday 28/3/08 involving stomach & abdominal aches/discomfit, pressured bowel movement, gas, GI tract inflammation, diarrhea. I think part of the reason was due to the fact that I am unsure about the 10:30am dosage, hence the question marks. I could have managed this better with sublingual & faster acting Benicar dosages. The symptoms did calm down but CFS symptoms flared up for several days. I can’t really find much reason for this other than not handling the Benicar dosages better. I had also been busy and my rest periods several days before had not been long or of good quality. Also there were some business, financial issues that I was worrying about. This probably didn’t help but its just conjecture really.
I required significant rest and could not do much on Friday-Sunday. Monday was also a tough struggle but I gradually got back on deck.
Since then I have been more particular about taking Benicar, including some sublingual dosages especially around the time I wake up. This seems to be the time where there can be nasty pressure and discomfit around my stomach, intestinal region. This action has helped.
I refer you to my previous posting as this has other measures I am preparing to take and the outcomes of my doctor’s appointment last Friday. I forgot to mention that he is getting me to take a 1,25 D, Vit D reading in around a month.
____________________
CFS anxiety depression food intolerances insomnia 125D70 Ph1 Feb08 weaning DHEA probiotics NOIRs limited outings covered up low lux home 25D9
|
Meg Mangin R.N.
Research Team
|
Posted: Thu Apr 3rd, 2008 00:45 |
|
Thanks for checking in. Your report is longer than we need to monitor your weekly status. Important details may get lost when too much information is posted. Please see this example. Keeping a daily journal is helpful to track meds but we ask that you not post it.
-Report key symptoms only in a list and rate them on a scale of 1-10 (1 meaning 'barely noticeable' and 10 meaning 'severe'). Indicate which, if any, are intolerable for you. It is not necessary to elaborate.
You are reporting a fair amount of natural light exposure which may be contributing to your fairly high level of symptoms. This is okay, as long as you are able or willing to tolerate them. See The Effect of Sunlight/daylight and Bright Lights
But you may have a difficult time progressing on the protocol, if you cannot avoid natural light exposure. Those who cannot or chose not to avoid natural light may still progress but the road to recovery can be pretty rocky. For some, these symptoms are the price they have to (or are willing to) pay for recovery.
Are all your daytime outings unavoidable? Some of the symptoms bothering you may be self-induced by this exposure. If so, adjusting antibiotics may not be enough. See Light avoidance simplified
You may reduce other symptoms too and feel better if you can eliminate all avoidable daylight outings and cover up well when you must go out. "You cannot change the way your body works as it heals. Nobody, not one person, has managed to recover without drastically changing their lifestyles during their recovery." ..Trevor.. See Testimonials to the need to avoid light
Increasing Benicar in anticipation of sun exposure may help. "I used to make sure that I was never more than 4 hours from my last Benicar whenever I had to go outdoors. Then, after the exposure, I needed to keep the 4 hour going for 12 hours after the final exposure. Beyond that I could slip back to normal dosing." ..Trevor.. See What precautions should I take when I must go out?
|
AussieCraigO
Member in Phase 1
| Joined: | Mon Jan 14th, 2008 |
| Location: | Sydney, Australia |
| Posts: | 16 |
| Status: |
Offline
|
|
Posted: Thu Apr 17th, 2008 01:49 |
|
Week 6 (3/4-9/4/08) & Week 7 (10/4-16/4/08).
DHEA 75mg
MP Meds
40mg Olmetec – 4-6 dosages per 24 hour cycle. Max 8 hour interval overnight.
Non MP pallative med use:
3g Melatonin – occasional.
Natural Light Exposure:
3/4 to 9/4/08 – 6.5 hours – school, shopping, lunch with friend, son sports, outside play with son, transport family, medical apt.
10/4-16/4/08 – 2 hours & 10 mins – school, shopping, outside play with son, medical apt.
Symptoms:
Numbness, lack of feeling in hands (4), Fatigue (8), disturbed/disrupted sleep (3), depression (4), anxiety (3), mouth ulcer (4), loss of appetite (4), stomach upset (3), intestinal discomfit (3), light headedness (3), brain fog (5), concentration problems (6).
Comments:
Symptoms flared from 8/4-14/4, with some symptoms still on 15/4 & 16/4. Symptoms eased after significant reduction in sun exposure and enforced bedrest for long periods. It’s clear to me that the week of 3/4 to 9/4/08 together with previous week involved too much sun exposure and induced symptoms.
____________________
CFS anxiety depression food intolerances insomnia 125D70 Ph1 Feb08 weaning DHEA probiotics NOIRs limited outings covered up low lux home 25D9
|
VEZ R.N.
Board Staff
| Joined: | Fri May 19th, 2006 |
| Location: | Ohio, USA |
| Posts: | 1658 |
| Status: |
Offline
|
|
Posted: Thu Apr 17th, 2008 01:58 |
|
Thank you for the concise report AC.
You are responding as expected and it sounds like you are managing very well. Keep up the nice work and hang in there.
Warm Regards, VEZ
____________________
lung gran x13 yrs neuro cardiac smp chronic cough joint pain TMJ pain tinnitus Factor V Leiden| armour probiotic|lowlux home NoIRs 6/30 Beni q4+prn 8/28 mino| 6/30 1,25D-58.3 25D-33.6| TSH-10.6 12/16/06 25D-9.6 TSH-8.63 8/06-25D=7|
|
Lottie
Board Staff
|
Posted: Thu Apr 17th, 2008 12:50 |
|
Craig,
I'm sorry that you do seem to have problems with the sun, as most of us with Th1 inflammation do.
It looks as though you have been able to connect the symptoms with the sunlight, and are getting some relief from the symptoms with the light reduction. I know it's hard to avoid going out for you, but I do hope that you are very careful about anything that isn't necessary.
Lottie
____________________
Dx- Sarc 1999 Cardiac, Neuro, Joints, Myalgia, Skin, SOB, Fatigue (Apr 04-1,25 D 48, 25D 17) (May 05-1,25D 35, 25D < 5) Pred x5yrs-now off! 5/19/04 beg Benicar 10/11 beg Mino, 1/24/05 mod P2, 2/2/06 P2, 1/6/07 P3 - Worked as RN until back injury
|
AussieCraigO
Member in Phase 1
| Joined: | Mon Jan 14th, 2008 |
| Location: | Sydney, Australia |
| Posts: | 16 |
| Status: |
Offline
|
|
Posted: Fri Apr 18th, 2008 07:09 |
|
Lottie,
The avoidance of sunlight is at this stage the single greatest problem I have in adjusting to the protocol. I understand its importance clearly but there are other competing demands that I have to balance (like most on the MP I imagine):
- My and my family's need to function as a family unit. My family life has been set up to allow me to spend the majority of daylight hours in MP conducive conditions at home but I also have certain responsibilites that require me to go out - such as taking up and picking up my son from school, attending medical appointments and getting appropriate drugs & getting groceries for myself (re the MP approved diet) and the family.
- The mental health issues posed by the MP's restriction on daylight outings. Since I do suffer from depression and anxiety and have to a greater extent in the past, this is important. There are some outings that are truly beneficial for my mental health and my family's benefit such as attendance and assistance at my son's sunday morning sports session. I intend to make every effort to attend this on as regular a basis as possible, taking all the necessary precautions (eg covering up, K cream, extra Benicar dosages) as I can.
I am taking into account Meg's previous post on this matter re exposure to sunlight and its effects. The reality is that I will from time to time push the boundaries on this matter to see how far I can safely go.
____________________
CFS anxiety depression food intolerances insomnia 125D70 Ph1 Feb08 weaning DHEA probiotics NOIRs limited outings covered up low lux home 25D9
|
Current time is 14:35 | Page: 1 2   |
|
|
|
|
