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eClaire
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Posted: Mon Jul 2nd, 2007 11:57 |
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Link to eClaire's Phase 1 PR: http://www.marshallprotocol.com/forum20/8002-1.html
As I finish up my first two weeks in Phase 2, I thought it would be good to create this Progress Report to get me in the habit of posting not only my progress, but also any insights I might have along the way that pertain to me. Hopefully, this PR will remind me of what I've learned so far on the MP (and if it benefits anyone else, that's icing on the cake). Claire
What I Learned about being in Phase 1: Same thing I've been being taught by life over and over and over: worry less. As a general rule, for me personally, it's not a good idea for me to ramp abx when taking more than 40mg q6h Benicar; if I am taking more Benicar than that, I probably already have enough IPR (I cut back on the Benicar to q6h to get more IPR and to stablize before ramping abx).
Phase 2 Progress Report # 1: The first two weeks on the 2nd abx has been so much easier than my first two weeks on the first abx alone, where I found myself in a runaway IPR that had to be damped down with 40mg q4h Benicar and 25mg q6h Mino. What success! Having a pretty uneventful first two weeks, tells me I've killed off a lot of bacteria. The 2nd abx did knock me back in regard to energy (had next to none anyway before starting the MP and also before starting ModPh2), but the drop in energy is no doubt also connected to dropping from 100mg Mino, where I felt my best, to 25mg Mino for several days before beginning the 2nd abx, which isnt necessary to do but I did.
What I've Learned about my MP Toolkit: Aussie Barb frequently refers MPers to the idea of developing an MP toolkit. And I've thought that my toolkit should contain only those strategies and palliatives that for me. However, as my body has changed so has what works for me. And so now I imagine a rather large toolkit that stays in my truck. I carry a tool belt now instead--that is, those things that seem to be working for me now. When the tool no longer fits, I throw it back into the tool kit and try something else. Later, that tool may be perfect for me once again. For example, I tried more frequent dosing of Benicar--i.e., 20mg every 2 hours instead of 40mg every 4. That made things worse for me at that time. However, recently--about a week into ModPh2--on a 40mg q6h schedule I found that I was having significanlty more IPR in the two hours before my next Benicar dose. I changed to the 20mg q3h schedule during the day--the kind of schedule that didn't work before--and I felt so much better.
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CFS FMS MCS COPD hypermobility IBS/GERD osteoporosis 125D48 25D8 Ph1Dec06 ModPh2Jun07 NoIRs limited outings covered up low lux home abx brk 3/2/08 to 5/25/08
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eClaire
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Posted: Mon Jul 2nd, 2007 13:01 |
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What I Learned about Sunlight Exposure to date: When testing whether I can tolerate more sun (particularly when I am able to handle more indoor light), I go really slow. That is, decided on the test and did it only once or twice a week so I can assess not only the short-term side affects but whether there are any long-term side affects. If I test daily, the long-term affects can sneak up on me and not be noticeable, slowing my progress. It's best for me to ere on the side of being conservative when testing MP lifestyle changes.
What I learned about Making Short Work of Time: When it comes to time, it is okay to play head games. I hope to see full recovery in 5 to 7 years (note that full recovery does not necessarily mean the end of Benicar or abx). That seems like a long time. However, I am more than 6 months into that. That's 1/10th of 5 years and 1/14th of 7, and that sounds pretty good to me. In a year's time, I'll be able to break it up into 1 year chunks (i.e., I will have reached 2/10ths or 1/5 and isn't that a big chunk of time). Also, while understanding the MP is a good thing, for me it's not a good idea to be reading Phase 3 progress reports b/c seeing all of the Phase 3 combos just makes time seem longer. It's better for me to focus on now and the path just in front of me (and also those little fractions I'm working on).
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CFS FMS MCS COPD hypermobility IBS/GERD osteoporosis 125D48 25D8 Ph1Dec06 ModPh2Jun07 NoIRs limited outings covered up low lux home abx brk 3/2/08 to 5/25/08
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SherryH
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Posted: Tue Jul 3rd, 2007 08:01 |
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Hi Claire,
I enjoyed reading your insights here...can relate to many of them myself. i especially liked your analogy of the tools in the truck and just using the few at a time located in toolbelt. Made lots of sense to me! Good to see you progress.....thanks for sharing. 
Sherry
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eClaire
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Posted: Fri Aug 31st, 2007 18:49 |
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Progress Report # 2: It's been over 9 months since I started the protocol and I have not experienced much progress. But I have experienced some progress. I now only feel slight numbness in the top of my left foot and I have to wiggle it to feel that (I used to feel numbness in both feet and my left hand). Although at times I have sharp body pains, they have decreased in number. The seborrhea is gone from my face (although you would not know it from the flaking of the sunscreen I use...I'm nearly blind without my glasses and cannot see it while it's drying to know if I've rubbed it in well enough). And for a couple of weeks, I actually had about 2 hours per day of energy again (alas, that's been lost to new rounds of IPR).
Although I haven't experienced a lot of progress (in fact, I now have plaque on my teeth where I had none before and am of course even more exhausted), I am not at all worried about that. Why? See Pam's Progress. Pam and I not only share many similar pre-MP symptoms, but many similar symtpoms while on the MP (so she is a good person for me to watch). She has been on the protocol not quite a year longer than me and felt compelled to take a break because of runaway herxing. Pre break she was still (yes, basically still) where I am now (for the most part). What she found while on the break is that she is 30 to 40% better. And she now knows without a doubt that the MP is the way to go. Her break has become my break, giving me the strength to keep on keeping on.
To Pam and all the other folk who inspire me on this site, "THANK YOU!"
Claire
Last edited on Fri Aug 31st, 2007 18:55 by eClaire
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CFS FMS MCS COPD hypermobility IBS/GERD osteoporosis 125D48 25D8 Ph1Dec06 ModPh2Jun07 NoIRs limited outings covered up low lux home abx brk 3/2/08 to 5/25/08
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eClaire
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Posted: Fri Aug 31st, 2007 18:54 |
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What I learned (note this is only what I have learned and may not apply to you): Doing the MP is most confusing. The body is changing all the time. Think of it as a little eco system. As we kill off bacteria, the eco system changes. That's why there is virtually no predictability (sometimes things are pedictable--that is, until they are not) and virtually no certainty as to exactly what combination works when. There are general guidelines (that is, we know Benicar and low-dosed, pulsed abx help us kill the bacteria and we know somewhat about what abx works on what bacteria and even what the phases probably ought to be), and so it's best to try not to be frustrated by the lack of certainty, the seeming lack of direction. The direction is there, but the nuance is my own because my eco environment is my own.
So I think I have to expect being wrong at least half the time. If your batting average is greater than that (and your body is much more predictable), then be very glad and bravo to you!
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CFS FMS MCS COPD hypermobility IBS/GERD osteoporosis 125D48 25D8 Ph1Dec06 ModPh2Jun07 NoIRs limited outings covered up low lux home abx brk 3/2/08 to 5/25/08
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eClaire
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Posted: Sun Sep 30th, 2007 11:19 |
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A little after nine months in...
After years of being unable to fall asleep on my right side due to dizziness, nausea, and terrible hot sweats, I am now being able to fall asleep on my right side more than half the time. The improvement has come on rather quickly and seems to be sticking!
Claire
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CFS FMS MCS COPD hypermobility IBS/GERD osteoporosis 125D48 25D8 Ph1Dec06 ModPh2Jun07 NoIRs limited outings covered up low lux home abx brk 3/2/08 to 5/25/08
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eClaire
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Posted: Sun Nov 11th, 2007 19:15 |
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What I learned - 2 New Tools For My Toolkit:
Tool # 1 - Stretching Out The Dosing Schedule (or why I decided to try this again)
By mid September (9 1/2 months into the MP), I was becoming demoralized. My will was sapped. I was still unable to tell any difference between day 1 and day 2. I was experiencing no good times. And I was progressively and slowly feeling worse--that is, I was experiencing no positive moments while standing up or walking. Indeed, my heart would race, my pulse would pound in my ears, I would become short of breath, I would feel dizzy, and my vision would start to dim (disappear from the outside in)--often just trying to walk across the room.
Initially, after my first dose of Mino, when I experienced heart arrhythmia, I tried a q72h and a q96h dose and felt worse. And it never occured to me to try again until I decided, when at my lowest, to take my own advice and stay open to the idea that what didn't work then might work now.
It occurred to me that perhaps my body was not getting rid of the abx in the 48 hour period and my feeling worse on Day 3 and 4 was evidence of that and not evidence that I needed to take abx more often as is generally thought to be the case. At any rate, for the first two to three weeks I felt worse to the same on days 3 and 4 as I had on Day 2. Not promising, but 1/2 of the way through, the dimming vision stopped. And then, at 3 weeks, I all of a sudden had 5 hours of dragging around energy (it was kicking my butt moving around, but prior to this I had trouble just walking across the room and so I kept going because I was just so amazed) OUT OF NOWHERE. Prior to this, I had to take Quercetin to have any dragging around energy and that had begun to stop working for me.
After a week of feeling better on the q72h schedule, I decided to try a MWF abx schedule (like most, I want to kick bacterial butt), but my symptoms swiftly shot back up after a WF/MW trial. And so I came to understand that not only was my q48h schedule too much for me so was the MWF schedule.
I have now settled on a q96h/q72h schedule and my life is vastly improved.
Overtime, as my body gets healthier and better able to process the abx (and handle the IPR), I imagine that I will drop back down to a q72h schedule and then a MWF schedule and then a q48h abx schedule. I plan to get back to the q48h abx schedule while in Mod Ph 2 before moving on to regular Phase 2. I figure that will be a sign that I am doing well enough to progress to regular Phase 2. (Although I have been told by a moderator that some MPers use the q72h abx dosing schedule--for most of the abx--throughout all the phases, and so I may end up modifying my planned strategy.)
Tool # 2 - Modifying the q6h Benicar Schedule to Manage My 6pm Herx
I read somewhere once that some American Indians believe that we have an hour of power. It's that time during the day when we are most energized, when our bodies are operating at their peak. Prior to the MP, my hour of power was sometime between 6 and 8 pm. After starting the MP, this is when I had my worst IPR, and once revved, my whole evening would be shot to miserable, near intolerable IPR.
The 9.3.9.3 Benicar schedule had been working for me because of sleep issues related to the evening dose and the 3am dose allowed me to have some time to fall back to sleep (if I was able) before the morning alarm would go off, and so I wasn't interested in changing it. But SOMETHING HAD TO BE DONE to dampen the 6pm herx.
I tried taking an extra 20mg at 6pm and then 5:30pm, but that did not help.
Then, I decided that since it takes 1 to 2 hours for Benicar to reach its full level in one's blood stream that I needed to take my 40mg Benicar 1 1/2 hours prior to the 6pm herx (or 4:30pm). However, that raised a bit of a problem if I wanted to stick with the remaining 9.3.9 schedule, as that would put 7.5 hours between the 9am and the 4:30pm dose when I was used to six hours, and so I decided to add 20mg at 1pm (what I call my booster).
Now with a 40 @ 9am, 20 @ 1pm, 40 @4:30pm, 40 @9pm, and 40 @3am schedule, I NO LONGER HAVE ANY PROBLEM WITH A 6PM HERX.
Last edited on Sun Nov 11th, 2007 19:44 by eClaire
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CFS FMS MCS COPD hypermobility IBS/GERD osteoporosis 125D48 25D8 Ph1Dec06 ModPh2Jun07 NoIRs limited outings covered up low lux home abx brk 3/2/08 to 5/25/08
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eClaire
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Posted: Sun Nov 11th, 2007 19:42 |
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Progress Report # 4: Although the progress I report below was not noticed until I switched to a q72h abx schedule, I have had significant progress that I had not noted previously.
Sometime last spring I started having the ability to sit in the recliner for a couple of hours on end at least once a day. This was not simply an improvement that would return me to my pre-MP state of health; it was an improvement over the previous three years. Since crashing and becoming totally disabled, I had had difficulty doing anything but lying flat and walking. Reclining at all made me ill--even with a small pillow on top of my regular pillow in bed. This improvement has remained pretty constant since showing up last spring. So being able to recline (and now also sit up at the table for many meals) is a major improvement for me!
Other improvements noted since changing to the new abx dosing schedule:
- More dragging around energy, approaching my pre-MP amounts (never thought, given my beginning, that I'd ever get even close to this in a year's time).
- I can clearly see the waxing and waning of IPR in relation to abx and I can see a definite benefit of taking Benicar when my IPR gets worse (before I noticed little if any improvement--only a worsening if I took my Benicar late).
- BMs are now approaching normal for the first time in 8 years (if I don't forget to take my Benicar).
- Although still experiencing some insomnia, I have slept better in the last two weeks than I have in my entire life.
 Truly unbelievable.
- I can now sleep with my mid-weight winter PJs on and am feeling cold; have had to sleep semi-nude to nude for nearly 4 years due to hot flashes. (I may even be able to break out the turtle necks and cashmere sweaters this winter that I have not been able to wear in years.)
- My eyes and nasal passages are more and more often feeling less dry and hot.
- My cheeks are feeling less and less like sand paper--I am actually noticing some smooth areas on my face.
- I actually noticed that the place where my ENT damaged a nerve when trying to get a salivary gland to test for Sjogren's was hurting the other day, followed by slight numbness in the area for days.
 The reason this is an improvement is that I had not noticed that my lip had stopped hurting and being painfully numb nonstop (it's amazing how we can miss big changes like that). At any rate, the area is now mildly numb and I CAN KISS WITHOUT IT BEING A PAINFUL EXPERIENCE.  (Well, I guess you can see why this is a big deal to me.)
- I turned up the light a bit on my computer the other day, and well, it was a big deal because I had accidentally left my 40% NoIRs on instead of wearing my 10%s (which I sometimes do) and the screen was too dark for 40%!!!!!
- This weekend Michele's brother visited and I actually fixed and served him lunch! (Well, I only heated up home made soup--I'd made the day before--and toasted English muffins, but I was serving!!!)
- I'm back to making evening meals in the crock pot.
Yep, I'm getting better.
Life is good; love life back. Claire
Last edited on Sun Nov 11th, 2007 20:21 by eClaire
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CFS FMS MCS COPD hypermobility IBS/GERD osteoporosis 125D48 25D8 Ph1Dec06 ModPh2Jun07 NoIRs limited outings covered up low lux home abx brk 3/2/08 to 5/25/08
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eClaire
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Posted: Wed Nov 28th, 2007 01:47 |
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What I learned: Although I know it is good for me to be back to q6h 40mg Benicar before ramping abx (if I can't handle the abx at q6h, then I'm not ready to ramp), I have been very resistant to taking extra Benicar (ramping to q5h or q4h) in between abx doses.
Well, I'm now on a MF abx schedule and so I have plenty of time to use higher Benicar doses to dampen IPR and also find out if, once dampened, I can handle the q6h dosing. Still, I've resisted.
I've noted that continuing resistance, but haven't been able to figure out why. (You have to love the Th1 mind. )
Finally, it occurred to me that my wrist pill reminder was too difficult for me to change as needed. Right at that moment I got online and ordered an easier pill reminder. http://www.epill.com/multibox.html?source=google While it only runs from 6am to Midnight, I use my cell phone for the middle of the night pill reminder.
Every thing is copasetic now.
Last edited on Wed Nov 28th, 2007 01:47 by eClaire
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CFS FMS MCS COPD hypermobility IBS/GERD osteoporosis 125D48 25D8 Ph1Dec06 ModPh2Jun07 NoIRs limited outings covered up low lux home abx brk 3/2/08 to 5/25/08
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eClaire
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Posted: Sun Dec 2nd, 2007 12:43 |
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ONE YEAR ANNIVERSARY!
Tomorrow marks the one year Anniversay of my being on the MP.
Last night I noticed, what is for me, amazing progress.
About a year and two weeks ago (pre-abx even), while being driven over to my mother's in the dark with my 2% NoIRs, I would have to keep my eyes shut to avoid looking at the lights. (My photosensitivity after abx became such that for three weeks I could only tolerate about 30 to 60 min of light a day, and that was a 15 watt lamp positioned behind me with my 2% NoIRs on. To shower, I'd leave the bathroom door cracked an inch with only the 15 watt light across the bedroom on.)
The great news is: last night while driving home from my mother's, eye's open with 10% NoIRs on (sometimes 40% when driving at night), I could look at and enjoy the Christmas lights I missed last year.
Yippeeeeee!!!
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CFS FMS MCS COPD hypermobility IBS/GERD osteoporosis 125D48 25D8 Ph1Dec06 ModPh2Jun07 NoIRs limited outings covered up low lux home abx brk 3/2/08 to 5/25/08
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VEZ R.N.
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Posted: Mon Dec 3rd, 2007 00:22 |
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Thank you for the progress report Claire.
It is good to hear you have experienced a significant change in your photo-sensitivity. Glad you are having some positive feedback, you have been working hard. Keep it up!
Take Care, VEZ
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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|
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eClaire
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Posted: Fri Dec 14th, 2007 13:45 |
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I'm updating so soon to report some significant progress that came to mind yesterday and in the past week. Progress, particularly when one is still experiencing some heavy IPR, can sneak up on you and so I thought I'd capture these observations now. Often you, er, I don't realize that a symptom is gone until someone else mentions having that symptom. Then, the light bulb goes on.
Plus, I'm sending this link to my cousin in N. Ireland so she can follow my progress and I thought I ought to bring things up to date.
Progress Report # 5: I realized yesterday that I've had only one small hot flash in the last 2 to 3 months. In addition to the typical run of the mill hot flashes, back flashes, a particularly nasty type of rolling heat wave up my back that would go on all night keeping me awake, had become a big problem for me in the last four years (I'd been having hot flashes for 15 years, beginning in my mid 30s). Also, urinary incontinence, a minor problem since my 20s, had started to become a serious problem in the last four years. Now, I'm back to where I was 5 years ago, a major improvement.
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CFS FMS MCS COPD hypermobility IBS/GERD osteoporosis 125D48 25D8 Ph1Dec06 ModPh2Jun07 NoIRs limited outings covered up low lux home abx brk 3/2/08 to 5/25/08
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eClaire
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Posted: Tue Jan 1st, 2008 14:19 |
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| Progress Report # 6: I've forgotten to mention that for some time now (about 3 months) my energy is better. That is, even though I do not have as much energy in terms of the number of hours in the day that I had pre-MP, the energy I have is of a better quality. Mainly, I don't feel like walking death. I don't feel healthy, but what I am feeling when I have energy is a good deal better than what I was feeling most of the when I had energy pre-MP. And for a couple of hours last spring I actually felt like a vibrantly healthy person. So I got a peek at what the future will bring.
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CFS FMS MCS COPD hypermobility IBS/GERD osteoporosis 125D48 25D8 Ph1Dec06 ModPh2Jun07 NoIRs limited outings covered up low lux home abx brk 3/2/08 to 5/25/08
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zeno_the_stoic
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Posted: Mon Jan 28th, 2008 10:14 |
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Hi Claire,
I've been reading your posts and I have salute your tenacity and thoroughness. You are encouraging me to keep a closer eye on the details. The healing is in the details we miss. For instance it's been more than a month since I've had a gout attack...ah sweet relief . I just noted that while reading your post.
Hang in there!
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Sarc|MP-12/12/07|PI-12/30/07|PII-2/20/08|PIII-06/19/08|Dtests 12/12/07-46 pg/mL-8.5ng/mL|acetaminophen,effexor,Mucinex,ranitidine,|NoIR,covered up|
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eClaire
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Posted: Mon Jan 28th, 2008 19:27 |
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Thank you Zeno! Glad to hear that you haven't had a gout attack for a while.
What I learned about the MP Toolkit and myself: Since July 4, I have been having bursitis in my R shoulder; it finally reached the point of intolerable last week. I have difficulty taking pain medications and so I have been stoic until stoic no longer worked and I found myself being fearful of every little move. Then, I finally accepted the fact that I was going to have to try Mino q12h to see if it would act as a palliative. Sure enough, it knocked me back into the week before pain-wise, which meant the level of pain was tolerable again (though still very high). However, my FM-like symptoms increased to the point of much discomfort. Still, the trade-off has been worth it, as I am not afraid to move my body for fear of setting off the pain in my shoulder.
I couldn't wrap my brain around how one symptom might be reduced while others increased (I had the same experience last year when I used Mino as a palliative) and so I asked for an explanation on my regular PR, and this is what Meg had to say, "Immunopathology follows no rules. Joints and soft tissues may have different bacterial combos, thus reacting differently to the same medication adjustment."
We're all fighting for our lives here on this site. Some of us, no matter what tool we try in the toolkit, find that we must throw one weary punch after another with little break, with few moments of feeling better.
Still, I find that my experience reflects what I see happening with other people experiencing success on the MP, and that is encouraging. For example, although some sxs abated, they later came back. The good news is, like the reports of other MPers, the sxs came back less intense and for shorter periods of time
I plan to stay in the ring and deliver one knock out punch after another. One day at a time, one moment at a time.
Last edited on Mon Jan 28th, 2008 19:29 by eClaire
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CFS FMS MCS COPD hypermobility IBS/GERD osteoporosis 125D48 25D8 Ph1Dec06 ModPh2Jun07 NoIRs limited outings covered up low lux home abx brk 3/2/08 to 5/25/08
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VEZ R.N.
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Posted: Tue Jan 29th, 2008 01:29 |
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Thank you for the update Claire.
Sorry you are having such a rough go of it with the shoulder. From reading your post I think you have got "it" down pat. You are right this is a fight for all of us and looks like you are in for the long haul. Keep up the good work and hang tough.
Warm Regards, VEZ
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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|
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eClaire
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Posted: Tue Feb 5th, 2008 21:19 |
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WHAT I'VE LEARNED ABOUT HANGING IN THERE (AGAIN)!
As I reported previously, switching to a q72h schedule for my mod phase 2 abx combo took three weeks for me to have a noticeable pay off in the reduction of IPR. Although it was the only strategy that I thought would work (short of switching to another abx combo), I was surprised at how long it took my body to register the improvement. (My impression is that this is not the case with most people and therefore my reason for posting--in case, your experience may be more like mine.)
At any rate, like some, more frequent low dosing of Mino did not act as a palliative for me during phase 1 of the protocol. However, just recently (see above) I starting taking 25mg Mino q12h to provide palliation to my R shoulder (turned out to be roter cuff problem and not bursitis)--that is, it reduced the inflammation. However, even though the shoulder pain dampened, all sorts of other pain spiked (reaching a crescendo of intolerable pain) and I was also returned to the land of the split sleep schedule brought on by hot flash induced insomnia (these are not hot flashes, they are pork roasts).
Well, after four days, the overall pain settled down. I still have little spikes here and there of what I call "perimeter pain" and I'm still getting the insomnia (although the length of time I am sleeping until the pork roast sets in is increasing). However, the R shoulder is improving and I'm tolerating the other symptoms, which are, of course, IPR--meaning, I'm still killing CWD.
Just thought I'd note that sometimes you just have to hang in there when trying a new strategy (if it is tolerable or can be made tolerable).
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CFS FMS MCS COPD hypermobility IBS/GERD osteoporosis 125D48 25D8 Ph1Dec06 ModPh2Jun07 NoIRs limited outings covered up low lux home abx brk 3/2/08 to 5/25/08
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eClaire
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Posted: Sun Apr 20th, 2008 18:07 |
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Progress Report # 7: I am on an MP break (tired of non-stop IPR, crisis in partnership), taking two Benicar a day (20mg 4 times a day), and I've been on the break since the beginning of March.
Since being on my break I've noticed an improvement that I was not expecting for a few years given the kind of improvement that would be required (and also because I had been warned me not to expect much improvement until then for this particular problem). In the two years before I started the MP, I had the trigger fingers in my hands checked and just the exam itself set them off (it woke up my immune system I guess) and made it sooooo much worse. Well, they've stayed horrible while on the MP thus far (over a year).
Now that I am on a break when I wake up (and only when I wake up--before all I needed to do was rest at a recline for 10 minutes) only the pinkie and ring finger of my right hand are causing problems, which are the two fingers that started having difficulty 16 years ago. I can feel the nodes in each hand and so I know there is still a lot of work to do, but they are on their way. I fully expect all ten knuckles to go into a rage again when I start the MP, but at least I know I am making progress with them!!! I am so psyched!!!
Also, my nearly non-stop heel and foot pain are almost non-existent and my hand pain has lessened. No doubt these will act back up when I go back on the MP.
Seeing the purpose behind the additional pain, Claire
Noted...VEZ
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CFS FMS MCS COPD hypermobility IBS/GERD osteoporosis 125D48 25D8 Ph1Dec06 ModPh2Jun07 NoIRs limited outings covered up low lux home abx brk 3/2/08 to 5/25/08
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eClaire
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| Joined: | Mon Sep 25th, 2006 |
| Location: | Virginia USA |
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Posted: Fri Apr 25th, 2008 20:37 |
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Progress Report #8: I am super psyched!!!
I've read comments by some folk on the MP regarding improvement in their vision and I am writing to report MY VISION HAS IMPROVED at 52!
I decided to try once again to get some prescription glasses to wear around the house (so I could stop looking 20+ years older with my NoIR fitovers), and because it had been 17 months since my last eye test, I decided it would be wise to have my eyes tested again. The doctor tested my old prescription and said he was surprised at how strong my biofocals were (I am farsighted and with farsighted people all over vision gets worse and worse with age, including close up, versus nearsighted people whose nearsightedness typically gets better while their close up vision gets worse).
The eye doc said he can normally predict how strong biofocals should be based on the person's distance vision and her age. He said my previous prescription had me pegged around age 60. So not only has my prescription gotten better, I've gotten younger!
He also told me that the quick decline in my vision (it took about two days to go from 1.25 bi-focal to 4.50 & 4.75 where it has stayed except for a slight worsening in the left eye) was not normal. This occurred a year and a few months before I became totally disabled--actually during a time when I should not have been working.
Additionally, I used to have noisy vision pre-MP. If you can imagine ink on the printed page being wet and have an extremely fine wire brush whisk some of the ink out from the letters, this is what I saw whether on the printed page or on the eye doctor's wall. I've noticed in the last year, that the noisy vision has gone away as well. Now when I select the clearest print in an eye test, the letters are nice and crisp (not looking like they are hairsuit).
I still have a ways to go vision wise (I'd be happy just to make it back to the kind of bi-focals one can pick up at 3 for $10), but I'm on my way!
Claire
(Note: I'm on an MP breaking, taking 20mg of Benicar four times a day.)
Last edited on Fri Apr 25th, 2008 21:01 by eClaire
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CFS FMS MCS COPD hypermobility IBS/GERD osteoporosis 125D48 25D8 Ph1Dec06 ModPh2Jun07 NoIRs limited outings covered up low lux home abx brk 3/2/08 to 5/25/08
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eClaire
Member in Phase 2
| Joined: | Mon Sep 25th, 2006 |
| Location: | Virginia USA |
| Posts: | 539 |
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Posted: Sun May 25th, 2008 18:15 |
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Progress Report #9: Today I restarted the MP after a nearly 3 month break from the abx and about a month's break from Benicar (I didn't write down the date when I stopped taking Benicar). I stopped the Benicar because it boosts my immune system enough to make me very exhausted and so I wanted to have a little bit of energy on break; mainly, to get a sense of my improvement since beginning the MP on 12/03/2006.
As pre-break when I have energy, which there was a whole lot more of during break though still less than pre-MP on many days, the energy is of a much greater quality.
I actually went to a party last evening (my big blow out before going back on the MP) and felt pretty normal. Well, pretty normal for someone who had had a long work week (that is, if I still worked and had long work weeks). Still, that was good. I couldn't have danced or anything like that, and I don't have enough energy or brain to hold down a part-time job yet, but I was able to socialize AND stand up in one place while doing so (versus grabbing a chair).
Another thing I have not reported was the reduction in pain in my joints that I experienced while on break that was significantly better than pre-MP. Pre-MP when I went to the movie theater after sitting for the entire movie, I would have difficulty walking down the stairs to leave. I'd have to wait until I was the last to leave so I could hobble slowly down. While I still experienced some stiffness when I went to the movies on break, it was considerably less and I was able to walk down the stairs like a normal person.
If you can avoid it (I couldn't), I'd recommend against a 3 month break, as after that long, it is daunting to face going back on the protocol. Two months will be my max in the future. Also, as Trevor has suggested, breaking is a great way, if you can do it, to prove to yourself that you are making progress, particularly if you are someone like me who has been pretty much done in by the MP.
Claire
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CFS FMS MCS COPD hypermobility IBS/GERD osteoporosis 125D48 25D8 Ph1Dec06 ModPh2Jun07 NoIRs limited outings covered up low lux home abx brk 3/2/08 to 5/25/08
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