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Aussie Barb
Member in Phase 3
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19553 |
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Posted: Mon Mar 27th, 2006 19:45 |
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Thanks Alayne
For having eaten D, you can treat it the same as a sun flare, take extra Benicar as required and adjusting the mino dose as suits you may help you also..
all best, Barb ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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Alayne
Member in Phase 3
| Joined: | Wed Sep 21st, 2005 |
| Location: | California USA |
| Posts: | 567 |
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Posted: Tue Mar 28th, 2006 08:27 |
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Oh, thanks for that reminder Barb! I was quite a bit more fatigued the next day, so perhaps I did actually digest some of the D. Hmmm. Or do I really need to increase my mino? Ah, the sometimes seemingly capricious natures of the MP reactions really keep me on my toes...yet, I do know that there's a rational basis behind each of these varied reactions...I just haven't learned them all...probably never will in my lifetime. 
Sun, 3/26/06, Day 131 Beni, Day 116 Full MP
Benicar 20mg crushed Q5.25H, 75mg mino_cycle 12, day 2
Sleep: Sleep by 2:30, 1st dose Xyrem 1:30, 2nd dose 3:45. Got up at 10:15. Also took a Tylenol PM tab, to see if it’d help me not wake up so much. Don’t know if it helped much, as I started waking up fairly regularly starting 6:30am, but I dozed off each time. Felt Morton’s neuroma flaring a number of times when I woke up.
Sx: Upon awakening, no herxing to speak of. Maybe a little edgy, but only if provoked. Felt okay until 1, then started getting tired. Couldn’t concentrate. Have a friend staying off and on for a couple of weeks, which is fine, but I suddenly couldn’t “take” the constant conversation because I grew very fatigued. Lay down and slept for three hours. Took an extra 20mg Beni before falling asleep. Felt much better when I woke up (a tad cranky), but don’t know if I felt better because of the nap or Beni or both. Until now, additional Benicar hasn’t had a noticeable palliative effect on me, like it does for many folks here – except for sun exposure and a couple of other times. I try it every so often though, to see what happens, because reactions can change.
Since my main symptoms on this last 75mg dose have been fatigue, I’m thinking I may have hit that point of being on a dose too long and think I’ll try a higher dose next.
Mental Energy: 75-65-75% The familiar difficulty with conceptual thinking and follow through with thoughts, but not nearly as marked as before.
Phys Energy: 70-60-75%
Mood: Okay with a few blips of crankiness when I woke up from nap. My mother says I used to be the WORST to wake up from sleep or naps. I'm all for saying I had low blood sugar, because I was generally ravenous upon awakening, as I was today.
Mon, 3/27/06, Day 132 Beni, Day 117 Full MP, 75mg mino_cycle 12, day 3
Sleep: Sleep by 2:15, 1st dose Xyrem 1:30, 2nd dose 4:15. Woke up 7:45.  Had the requisite wake-ups and finally couldn’t doze off anymore. I didn’t take anything else with the Xyrem last night, so may have to do that every now and again to get a longer sleep. Will suss it out.
Sx: No herxing to speak of until a very slight warm flush at 10:30 am. A few very tiny tweaks here and there during the day, but really pretty much nothing noticeable other than muscle fatigue. I kept busy from the time I woke up until about midnight. Nothing manic, but steadily got things taken care of. It was such a pleasure having a decent amount of motivation, organization, and increased ability to grasp what the heck it was I had to do. And I plan on doing the same tomorrow…can always hope, right? I had to go out before dark for a while, and took Benicar 20mg Q2H. That’s the only time I really feel the effect of the Benicar – and it’s a gooood feeling.
Again, the one thing sticking around is the increased fatigue, and I’m going to up the mino to 82.5mg tomorrow to test if I’m really in need of graduating. Unlike most here, plus testing the infinite patience of the board  , I’ve increased with 12.5mg increments since 25mg. I’ve herxed and killed plenty of bugs at each and every level, and this lower increase has worked very well for me. This is also what my doctor requests, and his patients are all doing well, which is really why I wasn’t too leery in trying it. Anyhow, had I not herxed on the smaller increases, I would have argued in favor of 25mg. Just had no need to. That said, let me reiterate that this is not what Dr. Marshall or the moderators advocate for Phase I!
Mental Energy: 80% Yahoo! I could number crunch!
Phys Energy: 75% with dips
Mood: Good, satisfied, quite excellent.
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CFS/ME/FM 6/05:25D-34 1,25D-69, 11/07:25D-8 1,25-37, Sick 6-11 mos/yr x30+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, 10/09-No ABX, NonMP Meds: Calc&Mag/Lysine
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Alayne
Member in Phase 3
| Joined: | Wed Sep 21st, 2005 |
| Location: | California USA |
| Posts: | 567 |
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Posted: Sat Apr 8th, 2006 03:24 |
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Tues 3/28 – Thurs 4/6, Days 133-142 Beni, Days 118-127 Full MP
Benicar 20mg crushed Q5.25H (2QH w/sun exposure), 82.5mg-100mg Mino
Well, I’m not going to try and catch up with the last 9 days, because that’d be far too much ink and brain drain. But, will summarize some.
Since my last post, I started 82.5mg mino, experienced very little, if any herx, and went up to 100mg. I’m on my 2nd 100mg cycle right now. The herxing on 100mg has been pretty minimal as well, although stronger than the 82.5mg dose. Mainly rib and mid-upper back and neck again, with some mild headache and body heaviness. The difference between this and 75mg is astonishing! Man, I think I thought I might not get past that one, although it already seems like ages ago.
In the meantime, I’ve been to the dentist again, got lots of sun exposure that day and wanted to cry from fatigue when in a store, but other than that, fared the exposure very well. I always cover up well and use lots of K-cream. Thankfully we’ve been having unusually cool weather in S. California (although if anyone’s been flooded – sorry!), so the heavy clothing hasn’t become an issue yet. The dratted daylight savings time and growing daylight hours has certainly put a dent in the available time for us to head out into, so that’s still taking some getting used to. There are many things I now cannot do after dark (post office, prescriptions, library, etc.), so I try to time all those trips into one.
Doing the MP is not just a learning experience about science and finding health. It’s also about getting to know oneself a whole lot better, and finding out how much one is actually capable of. My wonderful guy finally acquiesced to starting the MP a little while ago. His health had started deteriorating faster than I could believe and the day he finally said he’d try it, I knew we’d be okay. However, unlike me, he’s not eligible for disability and doesn’t have family to help out financially, so must continue working. He’s grown very weak, has lost far too much weight, his brain’s strongly affected, and life has turned very very difficult for him. I’ve been caring for him day and night, both physically and emotionally. If you want to talk about improving on the MP, well, I’d not have been able to help him at all before starting. He was my caretaker! Nor would I have been able to even a couple of months ago. But now? Yes.
I’m taking each day minute by minute, hour by hour. I’ve also started my Pranic healing exercises again (help strengthen the body’s self-healing ability) and meditation (includes lots of prayer). And so far am holding out better than I’d ever have thought possible. I’m very proud that I can do this and very very worried about my guy. Right now he’s working and called to tell me he can barely stand. As a freelancer, he can’t let others know he’s sick because they’ll not hire him in the future. Any wonderful thoughts, prayers, good vibes are welcomed.
On top of this, had a guest for a week. Ugh? It was the first time someone had come to actually stay with us during the MP and we discovered that it’s very difficult if that person doesn’t understand what’s going on. He was judgmental of some symptoms and found it hard to believe it was a disease causing some of the mental/emotional behavior (only a small part of it being mine). I finally told him he didn’t have to understand it, just accept it. He finally left yesterday…whew! It’s amazing how much better one feels without someone else’s negativity and misunderstanding around. We’ve enough to deal with!
And now, my father had a serious accident on Tuesday and I’m flying in for his second surgery next Tuesday. He was backwoods fishing, stepped out of a boat, and his lower leg bones (tibia, fibula) shattered into pieces. Literally. Lots of travel on whitewater with the shattered leg, the Forest Service, ambulance, rural hospital, helicopter, etc. My father has a Th1 disease (Menniere’s syndrome) and has broken a lot of bones in his lifetime (osteo?). I’d really like to know what his 1,25-D is, but my parents would not consider the MP even for a moment – for themselves. Note: I haven’t been able to fly or see my family since last Sept because I’ve been too weak. Another big improvement just to think about it! Will post about how I fare.
The visit to the folks will entail much more light exposure than I’ve experienced thus far. Their house has skylights and big windows all around. I plan to darken a couple of rooms for myself, and will also have to darken the area where my father’s recuperating, so I can help out. We’ll see how that goes over. However I know I’ll be getting quite a bit of exposure in that house, no matter what I try, as my mother seemingly cannot bear dimmed light – big surprise to me. I will also initially be going to the hospital daily, entailing a lot of sun exposure during the drive. I will be helping to care for my dad and mom, I guess. Well, like I said, I wouldn’t have been able to do this pre-MP or even a couple of months ago.
Now, all I have to figure out is how to take care of my guy and also help my folks. It’s a slippery slope, this is. To be honest, I find myself sometimes wishing someone’d take care of me for a day, but then I remember that this is real life, too many people have to go through this and/or things far far worse or more difficult, so just swallow it and forge ahead. Backbone is something I’ve (we’ve) all acquired through the years of illness, that’s for sure.
So, I plan to drop back to 75mg QO2-3 for the trip. I don’t want to stop the MP, because I’ve noticed that my immune system doesn’t stop anyhow. I feel good if I extend a cycle for 5 days or so, then start herxing again. Hopefully, the drop back in dosage will keep me mildly herxing/maintaining, but at least I won’t fall back too much. A lot of Benicar will be crushed for the trip, that’s for sure. I don’t know how long I’ll be staying. It’ll depend on how my guy’s doing back at home, versus my parents, and how much guilt I can handle.
And in the meantime, I’ll just continue to heal. I don’t have a choice, do I? I’ll try to start keeping a better posting record again. Have just been learning to balance new things.
All best to everyone reading this, Alayne
Edit: I've actually been ignoring a lot of my herxing, because I just plain old don't have time for it. But I'm thankful that this didn't happen while on the 75mg. I don't think I would've been able to do all this...or at least not nearly as well. Last edited on Sat Apr 8th, 2006 03:38 by Alayne
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CFS/ME/FM 6/05:25D-34 1,25D-69, 11/07:25D-8 1,25-37, Sick 6-11 mos/yr x30+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, 10/09-No ABX, NonMP Meds: Calc&Mag/Lysine
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Vicki SA
Member in Phase 3
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Posted: Sun Apr 9th, 2006 02:20 |
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Best wishes Alyane for your health and your family's. I am thinking of you as you go through this tough time.
cheerio Vicki
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ME/CFS 2000, Splenectomy, 8/05 - 1,25D51,25D16.5, Ph1 12/05, Ph3 1/07, Zoton 30mg, 2008 - cover with light r/t Work 3/7, NoIRs, hat, cover well, invis. zinc for outside, low lux home, Sept08 25D - 8
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Robertrr
Member in Phase 3
| Joined: | Thu Jul 14th, 2005 |
| Location: | Austin, Texas USA |
| Posts: | 384 |
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Posted: Mon Apr 10th, 2006 17:46 |
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Alayne,
You seem like you're coping very well considering all that you're going through. I wish you all the best and may you and your loved ones be well.
Robert
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Sarcoidosis 125D44 25D28 Ph1Jul05 Ph2Sep05 Ph3May06 D25-8(Feb07) May08 NoIRs outside otherwise normal light exposure
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Alayne
Member in Phase 3
| Joined: | Wed Sep 21st, 2005 |
| Location: | California USA |
| Posts: | 567 |
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Posted: Sun May 14th, 2006 20:02 |
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| Oops! Last edited on Sun May 14th, 2006 23:58 by Alayne
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CFS/ME/FM 6/05:25D-34 1,25D-69, 11/07:25D-8 1,25-37, Sick 6-11 mos/yr x30+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, 10/09-No ABX, NonMP Meds: Calc&Mag/Lysine
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Alayne
Member in Phase 3
| Joined: | Wed Sep 21st, 2005 |
| Location: | California USA |
| Posts: | 567 |
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Posted: Sun May 14th, 2006 20:03 |
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Thank you so much Vicki and Robert and all those who PM'd me. It was wonderful to get such support.
Sun, 5/14/06, Day 180 Beni, Day 165 Full MP, Day 7 Mod Ph2
Benicar 20mg Q2-5H (depends on light exposure), M+C Q48-75H
Hi All!
This past month has been a marvelously revelatory one! There is absolutely no possible way in the world that pre-MP I’d have been able to do what I’ve accomplished here at my folks. I could barely walk or think straight when I started the MP process. Granted, I’m having a lie-down right now , but I have started Mod Ph2 and was up and about a lot yesterday, including in the sun. I also figure that lie-downs will be good for a while to come and look forward to the day that they’re only necessary for major physical exertions, such as climbing a mountain, or just plain old relaxation on tropical islands <another >. That said, I’m really looking forward to many more improvements in the coming months (note, I don’t say month because one of my newfound strengths is realism), and my enthusiasm is based on the following…
After coming to my folks’ to help care for my father, I could have started Phase 2, but was afraid to herx too much while having so much responsibility, so I maintained on 100mg Mino QO3 and Benicar. This became an MP holiday of sorts. (I can’t go off the abx for a holiday because my immune system kicks in, so this way I herxed pretty mildly or not much most of the time.) So, I was able to suss out what’s changed since beginning the MP. Granted, I came here in a wheelchair because I was having a bad day when I flew (that’s when I discovered that stretching my abx to 4 days made my immune system do all sorts of “nasty” things and my flight was on the 4th day), but since then, life’s been pretty amazing with its discoveries.
The following is a mix of improvements experienced since starting the MP as well as those experienced in my month-long semi-hiatus.
- Incapacitating fatigue – I still experience varying levels of fatigue, but thus far, haven’t been bed bound for days as I was pre-MP. Over the past month, I’ve accomplished far more than I’ve done in a very long time! Have had some days of unbelievable stamina and energy and the others have been pretty darned good.
- Severe migraine-like headaches – Haven’t had one since avoiding sunlight and D.
- Low grade fevers and low basal body temp – Daily fevers stopped with the MP and body temp generally hovers in the 98 range now.
- Body/joint pains – Hard FM symptoms gone and only manifest themselves as herx now.
- Dry mouth and eyes – Greatly diminished
- Daily chills and night sweats – Used to be pretty constant, but have only had one night sweat in the past couple of months.
- Bruxism – Gone! I wore a super hefty mouth guard after years of clenching so hard my mouth bled. I’ve not worn it for at least two months and all’s well!
- Dental – Gums have gotten loads better and I’ve not had a toothache or something rotten happen this whole time, which is amazing to me. I keep waiting for some major dental herx to hit, but so far it’s been negligible (have 15 root canals, strong propensity for jawbone infections, etc.)
- I can breathe through both nostrils for the first time in my life!
- Post-exertional malaise – I don’t need to rest for days after exerting myself. Granted, I’ve learned to pace myself MUCH better and generally know when to stop, but it used to take me five days to recover from a few hours of teaching (I’d be flat on my back in bed), and a day to recover from showering. I can now often keep busy for a few hours to a day or days and recover quickly (hour to a day!
- Esophageal spasms – Gone
- Foot/toe cramping – 90% gone
- Chronic dandruff and dry facial skin – 99% gone.
- Feet edema – Started swelling a few years ago. Haven’t swelled much at all since starting the MP, AND they didn’t swell more than a tiny bit on the flight to folks (they’d really balloon from flights, and it’d take a couple of weeks for them to go down).
- Surprising improvement - Right ear wasn’t painful at all during my flight and adjusted just fine to the pressure changes for the first time in 20 years! Damaged the ear drum about 20 years ago when flying with a head cold. It hurt fantastically after that every time I flew and couldn’t adjust on its own to the pressure changes.
- Lump in throat – Totally disappeared for Phase 1 and reappeared as a little herx for a couple of days on Mod Ph 2.
- Weight changes without changes in diet – Dropped from 135 to 112 by December, but since then have gone back to 125 and am holding!
- Cloudy urine - Gone
- Sensitivity to heat and cold – The extreme sensitivity to cold has greatly diminished, and I’ll know about the hot weather soon enough. Feet and hands not frozen to the bone any longer.
- Driving – Had to stop driving completely for two months because I couldn’t handle it. Then slowly worked my way up to three miles maximum for a few months. This last month I drove a couple of hundred miles in unfamiliar areas and did very well!
- Vision - Don’t need reading glasses or magnifier any longer! Can’t believe it! Don’t have to hold a book at arm’s length, don’t have to tilt my head up to read! I can read straight on, and also print about half this size without even squinting! Seriously!
- Left shoulder is no longer painful and has full range of movement. It hasn’t herxed since mid-March! This shoulder was never the same after I injured it in a car accident 3.5 years ago.
- Thyroid, DHEA, Pregnenolone and Progesterone levels back to low normal-normal levels! Stopped thyroid supplementation within a few weeks of starting the MP, DHEA & Preg about 4 mos ago and Progest. & Testost. about 3 mos ago. Menstrual cycles have stabilized for the first time in years.
- Alcohol sensitivity has diminished greatly. Not that I’m knocking back the booze, but can have a glass or two of wine without any noticeable effect. Not so sure I can be really proud of this one though.
Brain Fog- Still have quite a ways to go, but have definitely improved!
- Short term memory and focus – They’re still not great, but much improved over the past few months. Am lately beginning to take interest again in world events and can also remember much more of what’s going on!
- Thought processes, reading and directional comprehension – still cannot read and comprehend heftier academic tomes, but my reading level is greatly improved (from elementary school to some college), I can follow somewhat more complicated plots and conversations, and directions.
- Vocabulary’s increasing!
- Speech and writing can still be quite basic at times, but I’ve had definite improvement over the past month.
- Math abilities still stunted, but better. It takes quite a bit of effort, but I can often add in my head again and remembered how to figure out percentages the other day!
I am so terribly grateful to Dr. Marshall and his brilliant mind and compassion for others, to the experienced and wise Aussie Barb who’s known exactly how to walk and talk me through some of the major hurdles thus far, plus many of the little ones, to Meg for helping me so wonderfully, and Belinda and Lottie for having spoken to me so brilliantly in the beginning, and to those of you who have PM’d me with such amazing support and kindness. I really want to thank everyone here for showing such courage and determination and helping me and others believe on a daily basis that this is the right way to go.
No, this ain’t easy street, but it’s a sure sight better than rotting away in my bedroom with no end in sight. Miss the sun? Not really (was never a sun lover), but I sometimes miss being able to go about during the day. Then I mentally exchange that privilege for the one of walking on my own two feet when I want to and not when the disease dictates. It’s a no-brainer.
We’re all in this together and it’s just amazing to be part of such a group. Hipporay! -Alayne
Edit: It took me a gazillion attempts to post this correctly, so Phase 2 is starting to kick in. Bullet points kicked my behind! 
February 2007:
Jacks was teasing me and chased me around the house a while back. I kept running like a little kid to keep away, laughing the entire time. I couldn't believe that I could run so fast for a number of minutes! He couldn't believe that he could run that long either. It was really great (felt like I had wings), then I stubbed my toe hard and that was that...I think as happy as I was to run, I whimpered a bit for my toe which turned blue (but miraculously healed overnight!). That said, I did run a bit faster a couple of months ago when I thought a car was going to hit me, but running in my home was much more fun with far less of an adrenaline rush.
Alayne posture, healing.
Alayne mix of improvements
Alayne: vitiligo disappeared
The Panel on Recovery
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CFS/ME/FM 6/05:25D-34 1,25D-69, 11/07:25D-8 1,25-37, Sick 6-11 mos/yr x30+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, 10/09-No ABX, NonMP Meds: Calc&Mag/Lysine
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sunflower
Guests visiting Phase 1/2/3
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Posted: Mon May 15th, 2006 19:53 |
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| great post, alayne! i'm so happy to hear of so many improvements in so short a time. thank you for sharing them with us; it's so encouraging........you're kicking butt...sun
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lyme,fibro,candida,allergies,gerd,osteopenia/ pain,fatigue,dizzy,memoryloss20+yrs/ celexa,vicodin,cal-mag/beni 40mg q6h 11-05/phase 3,8-06/1,25d=34 25d=36,18,17,10,13,5,7
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Julia
Member in Phase 3
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Posted: Mon May 15th, 2006 22:29 |
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Wow, Alayne, and wow again! Thank you for making the effort to post all this. It's a really encouraging MP story. And bullet points too, and they worked!
I do hope your dad is okay. It's great that your folks have recognised enough of your improvement to recommend the MP to someone else! And stop feeling guilty. You are being a model daughter, rushing to your parents' needy side despite your own illness (violins ). What else could you have done?
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Sarc/uveitis/hypercalcaemia/ankle osteoarthritis/eczema. MP May04. 25D Apr09:5.6. Life is good! Julia's story
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