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k
Member in Phase 3
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Posted: Sun Jan 6th, 2008 00:50 |
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Previously I was posting in "Weaning" forum (as I was weaning from DHEA). http://www.marshallprotocol.com/forum38/10610-1.html
MP Meds
Benicar Q8H
Mino 75mg every second day, today is day 9 at 75mg
Palliative meds: Tried taking occasional extra Benicar when experienced symptoms, by made no difference. Took 2 panadol twice this week for headache.
Light exposure:
In general
- Outside with only face exposed between 30 mins–1 hour daily.
- At work, my face, hands and part of my neck are exposed to indirect light from outside coming in through the windows (despite use of blinds) approx 6 hours/day, 4 days per week
Over the last week: 3 days were I would usually be at work, I was at home, inside all day. Therefore no light exposure whatsoever. Therefore, less light exposure over the last week as compared to usual.
Symptoms:
No “significant” symptoms and no intolerable symptoms. (The following symptoms have been experienced, generally mild, occasionally moderate: sleepiness, sore legs, in particular calves, and also back of thighs, phlegm (throughout the entire day), sore jaw, face sore around cheekbones, sore arms, sore hands, headache).
Comments:
- As per Meg’s suggestion, I have tried taking an extra Benicar when I have noticed symptoms. I have tried this three times however did not experience any improvement in symptoms as a result.
- Over the next week I intend to try, as suggested by Meg, stretching out mino dosage to 72 hours to see if it provokes stronger immunopathology.
- Increased overall feeling of wellness. Increased energy, strength, stamina.
Questions:
May I ask for the questionnaire because:
- given that today is day 9 of mino at 75mg, I likely have only a few weeks left in Phase I
- I see my doctor on 23 January. It would be best if I had time to read and absorb the Phase II information before seeing him so I can ensure we will commence Phase II accurately and properly. (I am only able to get into see him every 5-6 weeks).
Thanks as always.
regards, k
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ME/CFS severe menorrhagia & dysmenorrhoea anxiety depression paxil 600mg calcium daily Ph1Oct07 Ph2Feb08 Ph3Sept08 25D:Jul07=50 Oct07=23 Jan08=13.2 Oct08=12.8 NoIRs cover-up low lux home lite exp r/t to work
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Meg Mangin R.N.
Former Team Member
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Posted: Sun Jan 6th, 2008 08:13 |
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Thanks for moving your reports to the phase 1 forum. Please review the information threads pinned to the top of this forum so you will be able to independently locate answers to frequently asked questions. See What should I know about Minocycline?
It looks like you are doing well, having learned to independently manage immunopathology by adjusting MP meds and using your personal tool kit to manage immune system reactions.
The second and third phase guidelines are available to study participants upon request at completion of phase one. Please see How do I know if I'm ready for phase two? for information on how to request the questionnaire.
Keep up the good work............
____________________
Nothing contained in this site is or should be considered, or used as a substitute for, medical advice, diagnosis or treatment by your physician.
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k
Member in Phase 3
| Joined: | Fri Aug 10th, 2007 |
| Location: | Australia |
| Posts: | 184 |
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Posted: Sun Jan 13th, 2008 07:21 |
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Weekly Update
MP meds:
Benicar Q8H
Mino 100mg every second day, commenced 13/01/2008
Palliative meds: None.
Light exposure:
In general
* Outside with only face exposed between 30 mins – 1 hour daily.
* At work, my face, hands and part of my neck are exposed to indirect light from outside coming in through the windows (despite use of blinds) approx 6 hours/day, 4 days per week
Over the last week
* No deviation from “in general” (above).
Symptoms:
No “significant” symptoms and no intolerable symptoms. (The following symptoms have been experienced, generally mild: sleepiness, sore jaw, phlegm, irritability).
Comments:
* I have tried once stretching out the mino dosage to 72 hours. I did experience some immunopathology, but it was not any stronger than usual. I will try it a couple more times though.
* I have noticed a small number of occasions where previously I would have worn my 2% NOIRS, but have now experienced difficulty seeing through them, and have had to switch to my 10% NOIRS. As I assume you are supposed to wear the darkest ones possible as much as possible, I switch back to the 2% NOIRS as soon as I can.
* I tend to herx around the middle of the fortnight of taking mino. But after that (i.e. towards the end of the fortnight) I feel really good. Whilst I have a long way to go, and am no where near 100%, I am really astonished and joyous at how well I feel. (It's been a long time!). I honestly cannot believe it. It is of course wonderful.
* Have been reading up on Phase 2 in preparation for my next Dr’s appointment in about 10 days.
Questions:
* None at this time.
Thank-you Meg for your efforts and ongoing support.
regards, k
Noted
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ME/CFS severe menorrhagia & dysmenorrhoea anxiety depression paxil 600mg calcium daily Ph1Oct07 Ph2Feb08 Ph3Sept08 25D:Jul07=50 Oct07=23 Jan08=13.2 Oct08=12.8 NoIRs cover-up low lux home lite exp r/t to work
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k
Member in Phase 3
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Posted: Sat Jan 19th, 2008 01:32 |
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Weekly Update
MP meds:
Benicar Q8H
Mino 100mg every second day, today is Day 7
Palliative meds: Today took ½ codeine tablet for back pain.
Light exposure:
In general
* Outside with only face exposed between 30 mins – 1 hour daily.
* At work, my face, hands and part of my neck are exposed to indirect light from outside coming in through the windows (despite use of blinds) approx 6 hours/day, 4 days per week
Over the last week
* Less than usual as 3 days over last week have been at home with IP and not gone outside at all.
Symptoms:
List only those that are significant and recent. Indicate if any are intolerable.
I have had the following moderate symptoms since day 5: back pain – middle of back on either side of my spine (constant dull pain rather than sharp), soreness / achiness / pain in hands, fingers, sides of thighs, arms, face, shoulders, neck, gums, also hips and knees at times. General overall weakness.
Other symptoms experienced generally mild: sleepiness, phlegm, irritability / grumpiness, being cold and not being able to get warm (not explained by ambient temperature), feeling unbearably hot (not explained by ambient temperature), no appetite and no interest in food (though am continuing to eat and drink), heightened emotional sensitivity, cognitively compromised.
Comments:
This is the most significant IP I have had since starting Phase I. Moderate symptoms usually only last a couple of hours, and occasionally for one day. So they usually don’t bother me and I’m quite happy to sit them out. Typically I go to bed and fall asleep for 5 hours or so, and when I wake up, they’re gone.
But not so this time. Being onto the third day of moderate symptoms, it’s approaching intolerable. I have taken extra half tablet of Benicar a couple of times but it doesn’t seem to make much if any difference. But I will increase Benicar from every 8 hours, to every 6 hours to see if it helps.
If my symptoms don’t become milder in the next couple of hours, I would like to take a single dose of 50mg mino (as suggested in Step 2 of “My immune system reaction (immunopathology) is too strong. What should I do?”).
Questions:
* If I took 100mg mino at 5AM this morning, how soon can I take another 50mg mino to reduce IP?
Thank-you Meg for your efforts and ongoing support.
regards, k
____________________
ME/CFS severe menorrhagia & dysmenorrhoea anxiety depression paxil 600mg calcium daily Ph1Oct07 Ph2Feb08 Ph3Sept08 25D:Jul07=50 Oct07=23 Jan08=13.2 Oct08=12.8 NoIRs cover-up low lux home lite exp r/t to work
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Meg Mangin R.N.
Former Team Member
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Posted: Sat Jan 19th, 2008 04:31 |
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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.
Review all options in My immune response/symptoms are too strong. What should I do? Try the options one at a time. Do not hesitate to use any of the med adjustments suitable to you.
You can take an extra 50mg mino at any time.
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. Hang in there.....
____________________
Nothing contained in this site is or should be considered, or used as a substitute for, medical advice, diagnosis or treatment by your physician.
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k
Member in Phase 3
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Posted: Sun Jan 20th, 2008 00:50 |
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Many thanks Meg for your speedy response.
I increased Benicar to 6 hours and then (since it wasn't helping much) to taking it every 4 hours (using an alarm and dosette box). This seems to have dulled a little the severity of the pain in my back (it is in the upper part of the mid section, of either side of the spine). The back pain is the most problematic symptom at the moment.
I have taken an extra 20mg of Benicar sublingually at times, which did seem to give me some relief, albeit not as long as I would like.
I have spent the last 3 1/2 days in bed or on the couch resting, eating well, and drinking fluids (water) and of course, completely avoiding all light.
I keep re-reading your post and My immune response/symptoms are too strong. What should I do? (and its links) to ensure I'm following the instructions correctly.
If after 24 hours on 4 hourly Benicar (to ensure I'm only trying only one option at a time), I haven't experienced sufficient improvement, I will try taking an extra mino.
I am doing my best to keep a positive attitude and focus on that this is all part of the healing, but the pain is wearing me down mentally and emotionally. So I'm keen to reign these symptoms in to being tolerable.
Thanks for your support.
regards, k
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ME/CFS severe menorrhagia & dysmenorrhoea anxiety depression paxil 600mg calcium daily Ph1Oct07 Ph2Feb08 Ph3Sept08 25D:Jul07=50 Oct07=23 Jan08=13.2 Oct08=12.8 NoIRs cover-up low lux home lite exp r/t to work
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Meg Mangin R.N.
Former Team Member
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Posted: Sun Jan 20th, 2008 04:08 |
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Your plan sounds good. See When to take low-dose, high-frequency minocycline
Be sure to take your pain meds and use any other non-medication measures that reduce pain.
Continue Benicar......increase to every 3 hrs with 20mg sublingual each dose.....if intolerable pain persists with mino and pain meds.
Hang tough.........
____________________
Nothing contained in this site is or should be considered, or used as a substitute for, medical advice, diagnosis or treatment by your physician.
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k
Member in Phase 3
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Posted: Mon Jan 21st, 2008 03:49 |
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Dear Meg
The back pain has, so far today, predominantly lifted! What a relief! Although I am still quite tired and weary.
I haven't needed any pain-relief medication today! But have continued the 4-hourly Benicar.
I did not get to the point of having to take extra mino.
Many thanks for your support during this time. This was the stronger herx I have experienced, so it was a bit daunting. But I feel better prepared for further herxes now, and in particular, won't wait so long next time to make adjustments to manage symptoms.
I'm just taking it easy and getting further rest today (eating well, drinking plenty, avoiding light).
Thanks once again,
regards, k
Noted
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ME/CFS severe menorrhagia & dysmenorrhoea anxiety depression paxil 600mg calcium daily Ph1Oct07 Ph2Feb08 Ph3Sept08 25D:Jul07=50 Oct07=23 Jan08=13.2 Oct08=12.8 NoIRs cover-up low lux home lite exp r/t to work
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k
Member in Phase 3
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Posted: Sun Jan 27th, 2008 10:05 |
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Weekly Update
MP meds:
Benicar Q4H, slowly moving back to Q6H
Mino 100mg every second day, today is Day 15.
Palliative meds: Occasional ½ codeine tablet for pain.
Light exposure:
In general
* Outside with only face exposed between 30 mins – 1 hour daily.
* At work, my face, hands and part of my neck are exposed to indirect light from outside coming in through the windows (despite use of blinds) approx 6 hours/day, 4 days per week
Over the last week
* Consistent with ‘in general’.
Symptoms:
List only those that are significant and recent. Indicate if any are intolerable.
Moderate symptoms: back pain – middle of back on either side of my spine (constant dull pain rather than sharp), something wrong with my legs – not sure how to describe but the discomfort is relieved by stretching (touching my toes), moderate pain in ‘shoulder bones’ (looked up anatomy sites on web and it is mostly the ‘acromion’ and a little bit of the ‘clavicle’ which hurts).
Mild symptoms: sleepiness, phlegm (pale yellow), irritability / grumpiness, feeling unbearably hot (not explained by ambient temperature), no appetite and no interest in food, facial pain in particular around mouth, jaw pain, different areas of my head hurting. General overall weakness.
Comments:
* The experience of the strongest IP I have had yet was a sobering one. Until recently I had ‘cruised’ through the MP with only mild and transitory symptoms. It was ‘good’ to have a more challenging experience and come out the other side – it enables me to be more prepared for the next one, mentally and in terms of how to adjust the meds to deal with intolerable IP.
* I saw my doc and he is pleased with my progress and my efforts and commitment. He is happy for me to go to Phase II and gave me the appropriate prescription. Yay!
* Also at doc had another blood test, including for 25D. I will get the results in about 4 weeks (next time I go to the doctor).
The Plan / next week:
I want to stay at 100mg mino before progressing to Phase II for probably another 5-6 days. The reasons for this are as follows:
* IP was much more severe that I have experienced previously. Want to wait a few more days for it to settle down a bit more.
* I will be getting my period in a few days – this usually knocks me around significantly. I want to start Phase II after the worst of my period-related symptoms have passed.
Questions:
* When I had moderate to severe back pain, I got some relief from putting an ice pack on it. Is this okay, or should I not be doing this? (When I have pain in a particular part of my body as part of IP, it also feels like the skin in that area is burning up or really hot. I don’t know if it in fact is because I have no accurate way to measure it).
Thank-you Meg for your efforts and ongoing support. It is much appreciated.
regards, k
____________________
ME/CFS severe menorrhagia & dysmenorrhoea anxiety depression paxil 600mg calcium daily Ph1Oct07 Ph2Feb08 Ph3Sept08 25D:Jul07=50 Oct07=23 Jan08=13.2 Oct08=12.8 NoIRs cover-up low lux home lite exp r/t to work
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Meg Mangin R.N.
Former Team Member
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Posted: Mon Jan 28th, 2008 03:55 |
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Your plan to stay with mino for awhile longer is good. It's okay to use ice or heat to relieve pain.......whichever feels better. Variances in heat perception irrespective of fever are not uncommon. See What causes night sweats, flushing, temperature disturbances?
Keep up the good work.............
____________________
Nothing contained in this site is or should be considered, or used as a substitute for, medical advice, diagnosis or treatment by your physician.
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k
Member in Phase 3
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Posted: Fri Feb 8th, 2008 22:56 |
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Many thanks Meg. I didn’t get to posting my Weekly report last weekend – sorry about that. But below is what I had drafted the below for the week of 28 Jan to 3 Feb. (I will post my report for the week beginning 4 Feb in the Phase II forum).
Weekly Update (for week of 28 Jan to 3 Feb 2008)
MP meds:
Benicar Q6H, slowly moving back to Q6H
Mino 100mg every second day, 3 Feb was Day 22.
Palliative meds: Occasional ½ codeine tablet for pain.
Light exposure:
In general
* Outside with only face exposed between 30 mins – 1 hour daily.
* At work, my face, hands and part of my neck are exposed to indirect light from outside coming in through the windows (despite use of blinds) approx 6 hours/day, 4 days per week
Over the last week
* Consistent with ‘in general’.
Symptoms:
List only those that are significant and recent. Indicate if any are intolerable.
New symptom: shortness of breath (between mild to moderate, comes and goes). I have read SOB MP page.
(Non-significant mild symptoms experienced: sleepiness, phlegm, irritability / grumpiness, feeling unbearably hot, no appetite and no interest in food, emotionally fragile / feel like crying, facial pain in particular around mouth, different areas of my head hurting, legs and hips feeling a bit strange, aches in shoulder bones. General overall weakness. Funny feeling on top of head/skull – a sort of mild burning sensation.)
Comments:
* IP totally settled down and then I had a couple of amazingly well days! I did 7.5 hours of work! (I have a desk job). It was totally amazing!
* Some mild IP returned with my period. But my period was not as debilitating as usual.
* I’m excited (though a little nervous) to be starting Phase II tomorrow!
* Reduced post-exertional malaise / “payback”
Plan:
Start Phase II on Feb 4.
Questions:
None.
Thank-you Meg for your efforts and ongoing support throughout Phase I. It is much appreciated. I look forward to continuing to work with you during Phase II. I will put my next post in the Phase II forum.
regards,
k
____________________
ME/CFS severe menorrhagia & dysmenorrhoea anxiety depression paxil 600mg calcium daily Ph1Oct07 Ph2Feb08 Ph3Sept08 25D:Jul07=50 Oct07=23 Jan08=13.2 Oct08=12.8 NoIRs cover-up low lux home lite exp r/t to work
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k
Member in Phase 3
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Posted: Wed May 28th, 2008 11:07 |
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Approx 7 months on MP
I am posting the following because I always find it really helpful and encouraging to read about the experiences of others, particularly those with similar diagnoses to me (even though it is all Th1). So hope this helps!
Main health problems:
* CFS/ME diagnosed August 2007 after having been sick since mid-2004
* severe menorrhagia and dysmenorrhoea (since menarche)
* depression and anxiety
* severe hyypoglycemia
* glandular fever when 15 and 21
Key Dates:
30 Oct 2007: Commenced Benicar
23 Nov 2008: Commenced Phase 1
22 Dec 2008: Completely off DHEA (having weaned)
4 Feb 2008: Commenced Phase 2
25D levels:
* Jul 2007: 50
* Oct 2007: 23
* Jan 2008: 13
Improvements experienced:
* increased strength
* increased energy
* increased stamina / endurance
* improved cognitive ability – able to think more clearly, better at problem solving, analysing etc
* fewer mood swings, am calmer and more relaxed, ‘catastrophise’ less
* reduced hypoglyceamic symptoms
* stomach is less sensitive, increased food tolerance
* no longer experience ME/CFS post-exertional fatigue (woo-hoo!)
* no shortness of breath
* menstruation: shorter cycle (less than 5 days for the first time in my life!), no longer completely debilitated as per previously – now just a little bit more tired than usual, no sore or sensitive breasts (previously extremely sore and sensitive 50% of each month)
Immunopathology experienced:
* Fatigue, weakness, sleepiness
* Cold and flu like symptoms: feeling of coming down with chest cold, head cold, flu, chest feels red raw, sore throat, sore glands in neck, phlegm (a constant since beginning MP), sore ears, feeling of having water in my ears, hot and cold, cold and can’t get warm, hot and can’t cool down
* Headaches
* Achiness / soreness / pain: shoulder bones, shoulders, arms, elbows, wrists, hands, fingers, hip bones, knees, legs, ankles feet, neck, jaw, gums, various spots on head, face.
* Low level ‘tingling’ sensation experienced at various times in almost all places that have experienced pain, achiness or soreness.
* Back pain middle of back on either side of my spine (constant dull pain rather than sharp)
* Skin having ‘burning’ sensation – in particular top of head, back
* Skin irritations – red welts and raised dry spots
* Tightness across ribcage, feeling of torso being too tight
* Shortness of breath
* Light-headedness, dizziness
* Insatiable thirst
* Nausea, stomach pain, no appetite, no appetite to the point of a complete aversion to food, insatiable hunger
* Neurological: crankiness, agitated, angry, extreme irritability (all for no apparent reason), complete lack of motivation / apathy, heightened emotional sensitivity, feel like crying / bursting into tears, feeling ‘spaced out’, feeling not myself, cognitively compromised – difficulty concentrating, focussing, articulating thoughts, short term memory compromised, 'depression' (it feels different from pre-MP depression)
* Light sensitivity (generally not too severe , but varies with the severity of the IP)
Notes:
* I follow the MP diet rigorously.
* I follow the sun precaution guidelines rigorously.
____________________
ME/CFS severe menorrhagia & dysmenorrhoea anxiety depression paxil 600mg calcium daily Ph1Oct07 Ph2Feb08 Ph3Sept08 25D:Jul07=50 Oct07=23 Jan08=13.2 Oct08=12.8 NoIRs cover-up low lux home lite exp r/t to work
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expate
Member in Phase 3
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Posted: Thu May 29th, 2008 00:46 |
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Thank you for thinking of others and sharing. It does help.
dette
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Hypervitaminosis D 1,25-D 52 pg/ml, 25-D 38 (4/08), 25-D 34 (8/08), 25-D 29 (10/08), 25-D 14 (3/09): all ng/ml, started Ph1 7/17/08, Ph2 11/4/08, Ph3 2/18/09. Covered up, but no facemask any longer. NoIRs. Home low light.
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Malcolm Jackson
Member in Phase 2
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Posted: Wed Jun 11th, 2008 19:37 |
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Thanks for sharing your experiences, I could almost have written them myself.
It took me fifteen years to descend in health to a diagnosis of CFS in April 2002 and the last month in Phase I has been among the most unpleasant experiences since then. By far the worst being the fatigue leading me to sleep most of the time between Minocycline doses.
Until I read your posting I had started feeling very low but your confirmation of progress has been most uplifting. I know we have to hang in there but when you read of an experience so close to your own it relly helps a lot.
Thanks again.
Malcolm
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CFS10yr+ chronic sinusitus 25D<10 (May08) paroxetine loratidine Zolpidem or Zopiclone NoIRs low lux home light exp max 30min P1May08 P2June08 D25-10 July08
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k
Member in Phase 3
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Posted: Sat Jul 26th, 2008 10:24 |
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Quick further update - approx 9 months on the MP
Just wanted to add a few further comments on recent improvements....
Firstly, all the above-mentioned improvements continue. I still have NO (CFS/ME) PAYBACK! My period continues to be only 3 1/2 days and cause me no discomfort (for most of my life it was 7 days and very debilitating).
I am now working 30 HOURS per week and this is not a struggle at all! When I started the MP I was working about 12-15 hours/week but this was a HUGE struggle. The quality of my work was pretty average and its quantity low - both these have improved significantly. Although it is an office job and you would think not particularly physically demanding, I used to dread having to for example, walk the few metres distance to the photocopier or the printer.
But I am not only working... I am also doing social activities... one per week (e.g. a meal with friends, DVD or a movie) and sometimes two such activities.
My activities around the house have also increased - I'm able to keep my house in better shape. I'm also able to spend more time preparing and cooking food (no longer am I restricted to making the quickest and easiest selections from the recipe book due to physical limitations).
An unexpected improvement has been increased libido. I've never had much of a libido at all. In the past I had tended to attribute this to being on anti-depressants (which I went on in my early 20s). Although I'm still on anti-depressants, I now have some libido! (Yay!)
I still have a LONG way to go on the MP, but my commitment to it only grows stronger everyday. On a daily basis I am overjoyed at how well I feel - I had given up hope that I would ever feel this good again. It is astonishing to me.
Thanks always to all the MP team.
regards, k
____________________
ME/CFS severe menorrhagia & dysmenorrhoea anxiety depression paxil 600mg calcium daily Ph1Oct07 Ph2Feb08 Ph3Sept08 25D:Jul07=50 Oct07=23 Jan08=13.2 Oct08=12.8 NoIRs cover-up low lux home lite exp r/t to work
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k
Member in Phase 3
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Posted: Sun Nov 16th, 2008 02:39 |
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Phase 3 meds with 40mg Benicar every 6 hours
Palliative meds: occasional panadeine
Light exposure: (I always cover up)
* Sat: none
* Mon, Tues, Thurs, Fri: indirect light from outside coming in through the windows at work (despite use of blinds) approx 8 hours
* Wed: none
Symptoms (over the past week):
List only those that are significant and recent. Indicate if any are intolerable.
None significant or intolerable.
Comments:
* Stopped taking hydralazine about a week and a half ago. No discernible adverse effects, so will remain off it. Will adjust signature line.
* Had 2-3 days last week where felt incredibly well - better than I have felt in 5 years or so. It was absolutely amazing. Looking forward to more of it.
* I have found that alternating the abx increases (zig-zag-ing?) works well for me.
Thank you!!!
regards
k
____________________
ME/CFS severe menorrhagia & dysmenorrhoea anxiety depression paxil 600mg calcium daily Ph1Oct07 Ph2Feb08 Ph3Sept08 25D:Jul07=50 Oct07=23 Jan08=13.2 Oct08=12.8 NoIRs cover-up low lux home lite exp r/t to work
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k
Member in Phase 3
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Posted: Sat Jan 10th, 2009 00:43 |
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Alumni Update:
MP meds: Phase 3 meds, 40mg Benicar every 4-6 hours
Palliative meds: frequent panadeine
Light exposure: (I always cover up)
* Mon: none
* Tues, Thurs, Fri: indirect light from outside coming in through the windows at work (despite use of blinds) approx 7 hours
* Wed: 1.5 hours
Symptoms (over the past week):
List only those that are significant and recent. Indicate if any are intolerable.
None.
Comments:
* Still no period (last period I had was late October 2008).
* Getting quite a bit of herx at current levels/dosages (but all tolerable) - yay!, but also some fantastic days too.
* When I'm not neuro-IP-ing...this 'new' experience of my 'new' (and continuing to improve) mind / consciousness can be quite amazing... like darks clouds and darkness lifting, like a dawn... the clarity and the lightness... and joy...
regards
k
24th January:
Palliative meds: occasional panadeine
Light exposure: (I always cover up)
* Sun: lots - about 10 hours (though covered up)
* Mon, Tues, Thurs, Fri: indirect light from outside coming in through the windows at work (despite use of blinds) approx 7 hours
* Wed: none
Symptoms (over the past week):
List only those that are significant and recent. Indicate if any are intolerable.
None.
Comments:
* Had a period (finally!). Was short and no bad symptoms which is great (given my history).
* Geeze I've had some bloody fantastic days lately. Just amazing.
"Plan":
* Continue.
Thank you, thank you, thank you!
regards
k
31st January:
Palliative meds: occasional panadeine
Light exposure: (I always cover up)
* Sun, Mon, Wed: none
* Tues, Thurs, Fri: indirect light from outside coming in through the windows at work (despite use of blinds) approx 7 hours
* Sat (today): 30 mins
Symptoms (over the past week):
List only those that are significant and recent. Indicate if any are intolerable.
None.
Comments:
* Some more fantastic days lately. Feel like I've gone up another small level/increment in wellbeing - yay!!! Every time this happens I am astonished - astonished at how it feels, which is amazing and wonderful! Don't get me wrong, it's all positive.
But after being sick for years there is astonishment..."this... this is my body, feeling like this? You mean, actually working for me, not against me...! wow! kewl!"
Hang in there everyone, yes, it is very very very TOUGH going, but when you start to get some of the 'return' on your effort...well, 'WOW!' is all I can say.
* Have started wearing a pedometer so I can track how many steps I do on average per day/week... with the plan of gradually increasing that number over time (as at times I do have excess energy, feel like doing exercise (albeit only capable of very mild exercise as yet and am very cognisant of its capacity to increase IP).
Thank you, thank you, thank you!
regards
k
I had completely forgotten what it felt like to feel not really sick, and, not just the absence of symptoms. I simply couldn't dredge up the memory or recollection (perhaps a partly-self-protective coping mechanism)? The level of well being I feel, the 'feeling good', it just keeps getting higher and higher.
Totally, completley wholeheartedly agree that we are incredibly lucky to live at this time when this discovery is available and that it's impossible to conceive of a way to thank Dr Marshall that would do justice to the breadth and depth of my gratitude. I mean, I'm getting my life back... how can you possible put a price or measure on that?
hang in there everyone, and thanks always to Dr Marshall and all who have helped him and continue to help him along the way.
regards, k
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ME/CFS severe menorrhagia & dysmenorrhoea anxiety depression paxil 600mg calcium daily Ph1Oct07 Ph2Feb08 Ph3Sept08 25D:Jul07=50 Oct07=23 Jan08=13.2 Oct08=12.8 NoIRs cover-up low lux home lite exp r/t to work
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k
Member in Phase 3
| Joined: | Fri Aug 10th, 2007 |
| Location: | Australia |
| Posts: | 184 |
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Posted: Sat Apr 18th, 2009 03:51 |
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Posted to another MPer:
My period, menstruation has gone through LOTS of changes during the roughly 17 months on the MP. I also had difficulty finding other people's experiences on this through searching. My history is not particularly similar to yours, but I thought you may benefit from me sharing my experience just in the sense of changes to the female reproductive system.
I have had severe menorrhagia (abnormally heavy and prolonged menstrual period) & dysmenorrhoea (painful periods but can also include and has in my case fainting, diarrhoea, extremely tender breasts). Since my diagnosis of CFS/ME, my periods became increasingly debilitating. Prior to and during my period I would be severely disabled - extremely fatigued and exhausted, unable to do anything but lie in bed (which amounted to 2 weeks out of every 4, i.e. the week leading up to my period and the week of my period). Great! Not! 
I have been on various pills since my early 20s, for probably a total of 5 years, including Yasmin at one stage. These tended to help for the short term, but then I'd end up with even worse symptoms. The docs would say, okay, time to change pills! When this stopped working they wanted me to try evening primrose oil, which I did for maybe about 6 months but it made no difference whatsoever so I stopped. The docs could do nothing for me. I stopped taking the pill at some stage during the MP (can't recall at the minute, though have it recorded).
Through the course of the MP my periods have come down from about 7 days to 2-3 - for me this is amazing. For most of my teens my periods were 10 days. My periods are now EXTREMELY LESS debilitating. I feel perhaps a little more tired that is all - this is a huge and dramatic improvement. For a while I had no PMS symptoms (sore breasts etc, which pre-MP was unbelievably painful), but the tender breasts has returned a little of late. Also, at one stage, my period completely stopped for about 4 months. Yes, I was a little concerned at the time (although also enjoyed the break!) but moderators assured me that this was likely to be part of the profound hormonal changes that you go through on the MP. Sure enough, the returned.
As I said, I know my experience is quite different to yours, but I thought sharing the changes I've undergone might be helpful to you.
All the best,
regards, k
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ME/CFS severe menorrhagia & dysmenorrhoea anxiety depression paxil 600mg calcium daily Ph1Oct07 Ph2Feb08 Ph3Sept08 25D:Jul07=50 Oct07=23 Jan08=13.2 Oct08=12.8 NoIRs cover-up low lux home lite exp r/t to work
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k
Member in Phase 3
| Joined: | Fri Aug 10th, 2007 |
| Location: | Australia |
| Posts: | 184 |
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Posted: Sat Apr 25th, 2009 23:29 |
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I wanted to share a story which I think is very indicative of my progress.
Mid 2007: Pre MP, had not heard of it at this stage
* Had to go to a shoping centre/mall because there was a lab there to get some blood tests done.
* Friend took me. I leant on him to walk (well, my movement was probably more accurately described as a shuffle). After the blood tests had to go get something to eat and drink because having the blood taken exhausted me.
* It was literally 'painful' to me being in the shopping centre environment - the noise, the bright lights, the colours, all the movement. It hurt my eyes, my ears, my brain...
* Where we ate I sat next to the wall and faced the direction where there was the least light, movement, people walking etc. It was still painful.
* This 'excursion' left me completely wrecked for days.
April 2009: approx 17 months on MP
* drove myself to same shopping centre (about 20 mins drive)
* Proceeded to shop for (to my own surprise) about 4 hours! - so lots of walking, trying things on etc. (I had to go into more shops than I usually would because 'new' shops have started up since I have last been shopping like this (years and years ago) so I didn't know what sort of clothes they sold (e.g. for what age group, what style etc).
* Had a couple of short sit down rests during this time (e.g. 5-10 mins).
* Drove myself home.
* Had a lie down for about 1/2 an hour in the afternoon (in an abundance of caution), but cooked dinner and did a few other things around the house, went to work the next day etc and have continued on as 'normal' since.
I was telling my best friend about how I had been shopping and she was just like....omg!, she couldn't believe the contrast! So I thought it was a good story to share. When I was sick, I bought my clothes online or through mail order catalogues.
The last few days I haven't wanted to go to sleep because I have just been so excited about feeling this well... I just want to stay awake and enjoy and savour it!
I still have a long way to go on the MP, but I continue to be as committed to every aspect of it as I have been from Day 1.
Immense thanks always to Dr Marshall and all support staff and volunteers.
regards, k
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ME/CFS severe menorrhagia & dysmenorrhoea anxiety depression paxil 600mg calcium daily Ph1Oct07 Ph2Feb08 Ph3Sept08 25D:Jul07=50 Oct07=23 Jan08=13.2 Oct08=12.8 NoIRs cover-up low lux home lite exp r/t to work
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Vicki SA
Member in Phase 3
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Posted: Sun Apr 26th, 2009 09:08 |
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Good on you K!  It is so nice to get some of your life back and have hope of getting it all back. Where would we be without the MP! 
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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