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laura1814
Member in Phase 3
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Posted: Wed Apr 2nd, 2008 22:49 |
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I'll be posting about my progress as much as I can. As of today, I am studying Phase 2 and planning to start it next week.
References:Last edited on Wed Apr 2nd, 2008 23:15 by laura1814
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CFS, EBV, PCOS, POF, TMJ, hypoglycemia, hyperlipidemia, MP Ph1 1/08, Ph2 4/08, Ph3 1/09; enzymes, & ranitidine PRN, NoIRs, low lux home, limited outings, covered up, 1,25D=37, 25D=9.
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laura1814
Member in Phase 3
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Posted: Fri May 16th, 2008 02:33 |
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Sorry for not posting. I intended to post a retrospective of Phase 1 right when I started Phase 2 but never got around to it! Now I have been in Phase 2 for about six weeks and am doing quite well!
Here is a list of improvements:
*I don't think I've taken any pain medications since starting the MP (if I did, it was early in Phase 1). Pre-MP, I frequently had significant joint pain when I got very fatigued. I have had some pain on the MP, but so far not to the level at which I used to take pain meds.
*My hypoglycemia is almost gone. It does come back sometimes, depending where I am in the various dosing cycles, but I haven't had the shakes in months.
*My heartburn is almost gone. Pre-MP I was taking Nexxium and/or Prilosec at a rate of 1 or 2 per day, more before singing. Now I only have heartburn when I eat too much, and it is cured with digestive enzymes and sometimes a little baking soda or calcium carbonate. But note that the one time I've sung since starting the MP, I did get hoarse, so there is probably still some subclinical reflux getting on my vocal chords (which was the original reason for the prescription). But it is not as bad as it was!
*My skin and hair are much improved. Frankly, they are like they were when I was in college (20 years ago); though my hair is still gray, it is coming in much finer, smoother, and thicker than it was six months ago.
*Dysregulated body temperature (cold feet and hands, hot flashes) is greatly improved. Still there occasionally, but it rarely bothers me.
*Brain fog is greatly improved, though it comes back depending on where I am in the dosing cycle. I even have spurts of creativity.
*I've lost about 15 pounds so far. (15 to go to get to my ideal weight.)
That's all I can think of at the moment. I'll post more later.
Overall, the MP is much less difficult than I thought it would be. In general, I feel pretty good. A significant part of that may be because I have committed to being housebound and so I don't push myself physically the way I used to. But the lifestyle changes were relatively easy to adjust to for me; in fact it is a relief to be housebound, not to have to force myself to go places and do things when I'd rather be at home resting. I realize most people don't have this luxury, even on the MP, and it is wonderful for me. I am so grateful for it, and for the MP.Last edited on Fri May 16th, 2008 02:54 by laura1814
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CFS, EBV, PCOS, POF, TMJ, hypoglycemia, hyperlipidemia, MP Ph1 1/08, Ph2 4/08, Ph3 1/09; enzymes, & ranitidine PRN, NoIRs, low lux home, limited outings, covered up, 1,25D=37, 25D=9.
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laura1814
Member in Phase 3
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Posted: Sat May 24th, 2008 23:33 |
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I tried to post here yesterday, but something went haywire and I lost it.
A couple more changes:
*My TMJ is gone. I haven't had it for so long that I forget to make note of its absence in my symptoms journal.
*My hypoglycemia came back this week, but it's not nearly as bad as it was pre-MP.
I have observed that my immunopathology peaks at 75mg mino, not at 100mg.
Here are four specific bits of advice I have to anyone starting the protocol:
Go ahead and order your NoIRs, even if you're not sure you're going to do the protocol, or you're not planning to start for several weeks or months, or you're not planning to reduce D intake until you start Benicar. Use the NoIRs like you would ordinary sunglasses. They are amazing. If I could go back and change one thing, I would have ordered them months before I did.
Get a weekly pill dosing box with a built-in clock with multiple alarms. Mine was relatively inexpensive (less than $10 IIRC at Wal-Mart) and has four daily alarms that I use for my q6h Benicar dose. I don't have to think about it, and I've learned to take the pills in my sleep. I would have lost the Benicar blockade many times without my "pill turtle!"
Keep a daily journal of your symptoms, activities, and thoughts. Charting symptoms helps too.
Consider using a compounding pharmacist for the non-standard dosages of the MP drugs. I found one in my town that is no more expensive than a regular pharmacy for me, though I have to file my own insurance forms. There are mail-order compounding pharmacies too. Look into it. It's worth it.
It's been about a year since I first learned about the protocol. I studied it for several months, then prepped for a few more (and looked for a doctor) and finally started in January. I can't really say if I feel better than I did a year ago, but I certainly don't feel worse--and I expected to. Overall the symptoms are tolerable and even predictable.
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CFS, EBV, PCOS, POF, TMJ, hypoglycemia, hyperlipidemia, MP Ph1 1/08, Ph2 4/08, Ph3 1/09; enzymes, & ranitidine PRN, NoIRs, low lux home, limited outings, covered up, 1,25D=37, 25D=9.
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thelymelight
Member in Phase 1
| Joined: | Fri Nov 4th, 2005 |
| Location: | Ontario Canada |
| Posts: | 186 |
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Posted: Sun May 25th, 2008 23:53 |
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Hi Laura,
Could you tell me what the " IIRC" stands for with regards to the pill dosing box? (less than $10 IIRC at Wal-Mart).
Also on this pill box/alarm can you re-set the alarms again for that day, after they have done off...I take Benicar more frequently (like every 2-4 hrs) so would need to set up more alarm times thru out the day.
Thanks.
Lisa 
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Lyme, Babesia,19+ yrs, neuro-psych-cogni|Sept08-125D/30.42; 25D/8.40; Feb09/10.40; Jul09/5.60 Olmesartan/Feb08; Ph1/Feb09. Low lux-some areas of home. MEDS: Thyroid 7.5mg, Cipralex 10mg, weaned Hydrocortisone. Cal/Mag 150mg each.
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laura1814
Member in Phase 3
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Posted: Mon May 26th, 2008 02:47 |
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Hi, Lisa!
"IIRC" is internet slang for "if I recall correctly."
The alarms on my Pill Turtle can be reset at any time, but if you wanted more than four alarms, I think you would do better to either find a box with more alarms (there are some out there, but they are more expensive) or use the box in conjunction with an analog alarm clock (analog because you get two alarms in 24 hours) or two. I did find a couple of alarm clocks in Wal-Mart that have multiple alarms. Or you could use two Pill Turtles, I guess! Or if you are really taking a dose every two hours, you could just use a digital timer that you carry with you and reset after taking the dose.
You might want to check out the variety of products available at Amazon just to research and see what is available. Most of the pill boxes with multiple alarms are designed to be refilled every day; what I particularly liked about the Pill Turtle is that it's a whole week's box combined with daily multiple alarms-- and it cost much less than most of the others that I saw. (Note also that the Pill Turtle comes with or without the clock/alarm; the one I bought at Wal-Mart is listed here at Amazon for $12 from a third-party seller.)
I looked through the list, and this one may meet your needs, as it says it has 30 alarms! Here (third party seller via Amazon).
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CFS, EBV, PCOS, POF, TMJ, hypoglycemia, hyperlipidemia, MP Ph1 1/08, Ph2 4/08, Ph3 1/09; enzymes, & ranitidine PRN, NoIRs, low lux home, limited outings, covered up, 1,25D=37, 25D=9.
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thelymelight
Member in Phase 1
| Joined: | Fri Nov 4th, 2005 |
| Location: | Ontario Canada |
| Posts: | 186 |
| Status: |
Offline
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Posted: Mon May 26th, 2008 04:15 |
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Thanks Laura for all the info and links...much appreciated.
I had planned to go to Walmart this week anyways, so I'll check out what they have..I already use a digital timer and after I take a dose, I just set the timer for the next dose.
Just curious, any particular reason why you like to set aside all your meds for the whole week, as opposed to just doing them daily?
Thanks again,
Lisa
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Lyme, Babesia,19+ yrs, neuro-psych-cogni|Sept08-125D/30.42; 25D/8.40; Feb09/10.40; Jul09/5.60 Olmesartan/Feb08; Ph1/Feb09. Low lux-some areas of home. MEDS: Thyroid 7.5mg, Cipralex 10mg, weaned Hydrocortisone. Cal/Mag 150mg each.
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laura1814
Member in Phase 3
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Posted: Mon May 26th, 2008 04:44 |
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Just because I only have to do them once, instead of seven times!
I don't often need to take extra Benicar (so far anyway!), and if I do, it's generally predictable and I just take it when I feel the need, not on a strict schedule.
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CFS, EBV, PCOS, POF, TMJ, hypoglycemia, hyperlipidemia, MP Ph1 1/08, Ph2 4/08, Ph3 1/09; enzymes, & ranitidine PRN, NoIRs, low lux home, limited outings, covered up, 1,25D=37, 25D=9.
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BARNEY
Moderator
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Posted: Mon May 26th, 2008 05:21 |
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Lisa,
Laura is correct to use a 7 day pill box....not only do it once instead of 7 times, but we have such brain fog that being able to look back in the pill box to see what you did, really helps when you have no memory.
I have always suggested to anyone starting MP to use a 7 day pill box because I found I could not remember a lot of times what I took 3 hrs ago.
I use my cell phone for a timer because I always have it with me (even beside my bed) and I can set it to repeat the times everyday for forever (as long as the battery holds out.........and I try to always keep it charged).
Hope this helps.
HANG IN THERE, WE WILL MAKE IT!!!!BARNEY
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64jointsarc77skinsarc80lungsarc81asthma/migranes
95rkidneyremoved(cyst)diabetic/gallbremoved,96
totalhyst(cysts,endom)01fibro,Benicar40/20mg&xtra
as needed,stage5,
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laura1814
Member in Phase 3
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Posted: Thu Jul 17th, 2008 03:06 |
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It has been a while and I meant to post this news several weeks ago.
After being diagnosed as post-menopausal a couple of years ago (extremely high FSH), I am happy to report that I started my period again last month, right before my 39th birthday!
You know what they say-- life begins at 40!
My PCOS symtoms are greatly improved. Acne is now part of PMS. Hirsutism is minimal, and I expect it to keep getting better.
Hypoglycemia is improved, and I expect it to keep getting better too.
I am in the second half of Phase 2 now and I've been pretty tired during the last few weeks. This is just general malaise, not feeling like doing much of anything. A little increased joint and muscle pain, plus sometimes late at night, depending on my dosage schedule, I have this all-over itchy feeling under my skin. That makes me a little restless but it's rarely intolerable for very long. Extra Benicar helps.
Overall I'm doing quite well, killing lots of bugs!
Following up on Barney's last post, using a seven-day pill box is very helpful when you have brain fog and can't remember if you took a pill. Sometimes I take my 3am or 9am dosages in my sleep and having the dose counted out in the box makes it easy to check when I wake up to make sure I didn't miss a dose. Otherwise I'd be clueless!
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CFS, EBV, PCOS, POF, TMJ, hypoglycemia, hyperlipidemia, MP Ph1 1/08, Ph2 4/08, Ph3 1/09; enzymes, & ranitidine PRN, NoIRs, low lux home, limited outings, covered up, 1,25D=37, 25D=9.
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laura1814
Member in Phase 3
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Posted: Sun Jul 27th, 2008 22:00 |
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| Actually, sometimes I can't remember if I took a pill even when I was awake. The pillbox with alarm saves me every time!
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CFS, EBV, PCOS, POF, TMJ, hypoglycemia, hyperlipidemia, MP Ph1 1/08, Ph2 4/08, Ph3 1/09; enzymes, & ranitidine PRN, NoIRs, low lux home, limited outings, covered up, 1,25D=37, 25D=9.
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laura1814
Member in Phase 3
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Posted: Tue Sep 29th, 2009 02:48 |
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Sorry for not reporting for so long.
I am in Phase 3 now, having just reached the max dosage of the first three antibiotics.
Overall, I am feeling relatively well.
Most of my symptoms are minimal, except for fatigue, brain fog, and some body temperature dysregulation, which may or may not be perimenopausal; I have not had a period for the last 11.5 months. I have also had very little pain during the last year.
I have days where I think I can see the light at the end of the tunnel, where I almost feel energetic-- but I don't have a lot of energy for doing anything constructive.
When I have to do something, I seem to be able to (both physically and mentally), if I can just get past basic disinclination and procrastination. But if I don't have to, I sure don't want to.
I was able to take care of myself alone for three months this summer, although some of that was on a planned break, and was able to take a plane trip (on break, Benicar only) to my cousin's wedding, and function relatively well even though I had to get out in the sun a lot for several days.
I make the most out of wearing hats, gloves, and dark glasses, trying for an elegant, put-together look that I find most people respond quite positively to. I have boiled down the explanation to the oversimplified: "I'm on a long-term drug therapy to cure my chronic fatigue and it makes me allergic to sunlight." That's all most people really want to know, but I'm happy to explain more if they want to know more! 
I find people in general to be much more accepting of my condition than they were just a few years ago. I think it's partly a change in my own attitude (I am no longer apologetic) but I think people are less inclined to "judge" about illnesses than they used to be. Or it may just be that the paraphenalia lends dignity.
Anyway, I want to encourage other MP patients to persevere. The lifestyle changes are manageable, and worth it!
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CFS, EBV, PCOS, POF, TMJ, hypoglycemia, hyperlipidemia, MP Ph1 1/08, Ph2 4/08, Ph3 1/09; enzymes, & ranitidine PRN, NoIRs, low lux home, limited outings, covered up, 1,25D=37, 25D=9.
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laura1814
Member in Phase 3
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Posted: Wed Sep 30th, 2009 08:52 |
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Someone asked me a question about how I do my meds and after writing a response, I thought I would copy it here in case it can help someone else:
The only way I am able to manage my meds is with two tools: a wall calendar (and a pen) and my 7-day pill box with four alarms (described above). I couldn't do it without either of these.
On the calendar, I write the Cycle, the Day, and the dosage. For example, my current cycle started on Sep 24. On that day, I wrote:
Cycle 21
Day 1
120 zith
150 clindy
100 mino
Then on the 25th, a big "2."
Then on the 26th, a big "3" and "150 clindy, 100 mino."
and so forth.
After I take a dose, I write a check mark next to the dose. So the 26th and the 28th have checkmarks, but the 30th doesn't yet.
Every ten days I write the next dosage amounts in, and fill in the numbers of the days. I usually write in the Cycle and Day 1 for the next cycle, but don't put in the amounts until I start the cycle (because that is when I decide what the doses will be).
I fill my seven-day pill box for the week by referencing the calendar on the wall. If I have not yet decided the doses (for the next cycle), then I leave those days in the box empty until I do. I don't add the Benicar until I decide the abx dosages because I am afraid I will get the days mixed up.
There is no way I could do the MP successfully without these two tools.
Last edited on Wed Sep 30th, 2009 08:53 by laura1814
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CFS, EBV, PCOS, POF, TMJ, hypoglycemia, hyperlipidemia, MP Ph1 1/08, Ph2 4/08, Ph3 1/09; enzymes, & ranitidine PRN, NoIRs, low lux home, limited outings, covered up, 1,25D=37, 25D=9.
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BARNEY
Moderator
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Posted: Sun Oct 4th, 2009 03:55 |
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Laura,
Glad to see you doing so well and helping others to learn of the MP.
HANG IN THERE, WE WILL MAKE IT!!!!BARNEY
____________________
64jointsarc77skinsarc80lungsarc81asthma/migranes
95rkidneyremoved(cyst)diabetic/gallbremoved,96
totalhyst(cysts,endom)01fibro,Benicar40/20mg&xtra
as needed,stage5,
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