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Joyful
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Posted: Mon May 11th, 2009 03:35 |
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So how bad does it have to get before you call it intolerable?
Has your definition of intolerable changed over the course of being on the MP?
When do you start looking for the brakes on the train and when do you keep on?
Your answers are appreciated! 
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eClaire
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Posted: Mon May 11th, 2009 07:30 |
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 When I started the MP, any IP short of killing me (and I factored that in too as an acceptable outcome) was tolerable. Given the old guidelines--guideliness that really did not work for me--, there seemed no other way. Thank goodness we have the new guidelines.
After months of that, and after 2+ years of continuing very high exhaustion and insomnia IP, I can no longer emotionally tolerate high levels of other IP, though I can continue handling the exhaustion and I am sleeping better even if I still have no reliable sleeping schedule.
Thankfully, my labs tell me I'm having lots of IP even though I have no where near the same high level of IP that I can detect without the labs. So I am learning a new level of IP, one that is in fact more tolerable, which is good because, as I said, I cannot tolerate what I once could.
At some point, I imagine that my labs will get better and I will have to rely on IP I can detect to tell me when to ramp or change combinations. THAT will be a learning experience. Perhaps by then, I'll be able to handle high amounts (like I did previously) of waxing and waning pain or other IP that I may have to go through to get well. Right now, I feel like I am on a break even though my labs say my body is a CWD killing machine.
As to when to put the breaks on...although some people feel comfortable doing the MP with creatinine labs as high as 2.14 (what mine got up to), by the time mine got there I was tired of feeling really horrible all the time and so I made the decision to try to keep my creatinine below 1.7 as a guide. Also, having have two rectal surgeries in the past due to pre-MP IP, I decided not to go any faster than my butt would allow. Perhaps others would be willing to endure sxs in that area that I will not knowing where they can lead. I'm not willing to take that risk again, as rectal surgery and recovery from rectal surgery is a pain in the butt. Also, if/when I get lung IP, I plan to take it slow even if it means dragging out the sxs, as that is one IP I don't want to get into trouble with.
One thing I notice from friends of mine on the MP is that as they start to feel better they get greedier about feeling better (their word for it "greedy"). It seems like we get so used to the pain and all the symptoms and then once we start getting breaks and can begin to see what the end looks like, we want it to be over with and want to get on with our lives.
Don't know if this adds to the conversation, but it is where I am.
Claire
Last edited on Mon May 11th, 2009 07:41 by eClaire
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42mo on MP; CFS FMS MCS COPD hypermob IBS/GERD osteopor; 125D48 25D<4;
NoIRs during most daylight outings; Ph1.Dec06 * ModPh2.Jun07 * AbxBrk.Mar-May08
* Ph2.Oct-Nov08 * Ph1.Jan09 * Olm.alone.Jun10
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JanEE
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Posted: Mon May 11th, 2009 08:11 |
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Joyful, great question.
Claire, I think our thoughts are similar on certain things. I had this almost finished before seeing your entry.
I've wondered the same thing myself. It's why I have so much trouble assigning a number to my symptoms. To me intolerable means you can't stand it anymore and are either unconcious or having to go to the ER for help, otherwise you are tolerating it---and that would be a 10. I think as long as you can make decisions to do what you have to do to control your IP you are still tolerating it. If it got so bad that one couldn't even function---that would be close to intolerable.
I also believe that one's pain can be more tolerable when it begins than after it's been with you for several weeks/months/years (a different time frame for each individual), because when IP begins you tend to think it will only last for a little while and then be gone. Pain and misery tend to wear one down. So, that's the reason we are told that "slow and easy wins the race".
But then there is stage 5. Even though I've read the stage 5 document twice, I'm not sure how one knows for sure when you are in it, but I think I might be and have begun to cut back, or even stop, my antibiotics. I've only had extra strong IP since the first of the year, but it's beginning to take it's toll. While I've had a couple slightly better days, I am still having trouble with such aching hips and painful back that walking can be difficult for a good part of the day. I don't dare make any plans and don't feel comfortable going to visit my kids. I can't even sit at the computer much without my back hurting so badly that I can't concentrate. While not nearly as bad as in the beginning my insomnia is back. Some IP symptoms hit me two or more times each day.
This month marks my completion of four years on the protocol and I'm wearing a little thin (wish I could say the same thing about my weight), especially when I felt so great at the end of phase 2, and thought I must be getting close to the end. I thought the whole thing was winding down and then WHAM! it hit me over the head and I feel worse than I did in the beginning. So, one evening during a painful spell I just made the decision on the spot to begin cutting back. With all the new information I'm finally beginning to wrap my head around the idea of stopping the antibiotics altogether and see what happens. Looks to me like there are a lot of us in this boat right now. At my age, I AM anxious for this to be finished. I want to have a few years to enjoy my newfound health---pain free!---and hopefully thinner.
Jan
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CFS, FM hypothyroid 125D69 Ph1 5/05 Armoir thyroid promethazine mag B12 for low blood levels NoIRs limited outings covered Ph2 9/06 Ph3 8/07 25D11
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Caitiegirl
Member
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Posted: Tue May 12th, 2009 03:08 |
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I walked into Caitie's totally dark room one night to find her with her NoIR's on and a cold cloth over her face. I asked her if I could get her anything and she answered, "A gun!" Perfectly described intolerable for us. We too are cutting back and finding some semblance of a life in the journey. I know Dr. M has said for a while to keep things tolerable and not to go too fast but the new tweaks to Phase 1 just seem to give us permission. I hope we get a new definition for tolerable too.
Mindy
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Caitie(19) lyme,seizures, myoclonus, dystonia, digestive, chronic headache, mental fog: 10/23/07 25D 36 1,25D 58, 1/18/08 25D 9.9 Cut sun/D 9/26/07 Benicar 10/25/07, NoIRs 10/29/07
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shegeek
Member
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Posted: Tue May 12th, 2009 16:18 |
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Any time I have suicidal thoughts of any type or degree (I am always aware that they're "not real" but they're still unsafe), or if I am even remotely tempted to abuse my cat. Those are my main clues that my brain IP is out of control. There have also been a few times when I was afraid I would cause permanent damage to my eyes; I never did of course, but the fear was what told me to slow down.
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FMS,IBS,osteoarthritis,osteopenia, hypertension/ 1,25D/25D=45/44 (10/04), 44/13 (1/05), 36/8 (7/05)
25D<4 (6/06) 25-D=5 (4-08). Avoid light & D w/NoIRs 11/04 Benicar 40mg/q4h(since 1/27/05) Phase 3
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Pipistrelle
Member
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Posted: Tue May 12th, 2009 18:06 |
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Like others above, I think 'intolerable' and 'tolerable' vary with length on the MP, and the degree of activity needed for everyday life. For example, I have to work - I'm single and self supporting, and self-funding the MP. So I need to be able to concentrate and to keep energy levels sufficient to manage 3 days a week of work. I had 2 blocks of 6 weeks sick leave when I started the MP, then took a month of annual leave. Since then I have had just two seperate sick days, when the IP was absolutely crippling to the point of not being able to get out of bed. Even so, there have been days when I've felt like crawling under the desk and sleeping - and was very grateful to have an office to myself!
I've found after a year on the MP that my resilience/tolerance of pain has dropped - either that or the IP has gathered pace despite not lately increasing any abx - maybe due to falling D levels.
It is actually quite difficult to judge and grade pain and IP - is my 7 from last May the same as my 7 from this May? But I guess it is one's definition of 'intolerable' in the present moment which matters - the past is done with.
It was a relief to read the revised guidelines and they have given me the confidence to stop the abx to see what my immune system is doing for itself. So far the IP is continuing, and I feel a bit better, within a very narrow range of function. I'm content to scale things back and see what happens, and then adjust the IP as best I can.
I wonder if those who have had chronic illness and pain for many years have artificially high pain thresholds, due to the gradual nature of disease onset, and maybe the pain threshold adjusts as the bug load gradually reduces - like a rheostat that has been jammed and then unsticks itself. Peak IP will happen, so will Stage 5. But maybe we will come to a different, less taxing level of pain tolerance through being healthy.
Morag
Last edited on Tue May 12th, 2009 19:00 by Pipistrelle
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Sarc lungs, uveitis '90 dx '92, pred 18 mo '93-'94; D25 31 Nov 06, D1,25 35 Nov 06, NoIRs Feb '07, D restrict Nov 06, low lux home, cover up, light exp work
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eClaire
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Posted: Tue May 12th, 2009 20:07 |
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Shegeek, you have reminded me of an improvement I've experienced while on the MP. For years, I had an irrational fear (brain IP) that I would slice my eyes with the razor accidentally while in the shower shaving my legs. I realize now that I haven't experienced that fear in a while. Amazing. It is interesting to watch all the bizarre little phobias that I would never tell anyone about just melt away over time.
Morag I think you are onto something about people who have been chronically ill for years having artificially high pain tolerance, and perhaps pain tolerance is like a rheostat. I mean, had I listened to the pain all the time over the years and had to focus on it the way I had to focus on some migraines, I would not have been living my life. Pain had to be at a level that it would make me cry to keep me from going about my life. Even on the MP in the beginning when I reached intolerable levels of pain, I was not crying. Pain had become so old hat by then.
Now just the thought of that sort of pain makes me want to cry.
Claire
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42mo on MP; CFS FMS MCS COPD hypermob IBS/GERD osteopor; 125D48 25D<4;
NoIRs during most daylight outings; Ph1.Dec06 * ModPh2.Jun07 * AbxBrk.Mar-May08
* Ph2.Oct-Nov08 * Ph1.Jan09 * Olm.alone.Jun10
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expate
Member
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Posted: Thu May 14th, 2009 23:14 |
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Shout outs to all of you dealing with this question. It continually amazes me to witness the courage and spirit people on the MP bring to their treatment.
My problem is nearly the opposite. I am at the maximum dosage of MZC and "worried" that I am not getting sufficient IP. Fatigue and malaise along with some manner of congestion and/or post nasal drip are my greatest symptoms at this point. I get occasional bouts of pain, from fleeting to brief, here there and everywhere (hips, shoulder, bladder, head, teeth) but nothing lasting.
I had begun to try exercising near the beginning Phase 3 but don't seem able to find the motivation now. That in spite of the fact that my relative inactivity and changed diet since starting the MP have put too many extra pounds on me to feel comfortable in my body. I know some will say that weight gain is due to IP or microbiota or whatever. I just know in my case, I went from being very active (5 exercise or ballet classes a week and walking to work) to near inactivity and from using skimmed milk to whole milk and fish to meat.
Anyhow, the weight thing has me very down. I have close to 20 pounds to lose before I would want to get back in to a leotard (I'm hoping to get back to ballet in the fall).
So, my dilemma is, do I try spacing out the M and C to try to provoke more IP as long as I'm having such fatigue and blah-ness and not exercising anyhow, or do I just stay here and (somehow) try to force myself to do something about the weight. I'm thinking about the latter. Oh, maybe getting my husband to "make" me go on evening walks with him as a start.
OK, well, thanks for reading.
 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), 25-D 15: D3=15, D2<4 (6/09): 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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eClaire
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Posted: Fri May 15th, 2009 02:46 |
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 dette,
One of the things I've noticed is that lack of motivation can be from exhaustion or from lack of motivation IP. So what you try to do and what succeeds may depend on the source of the lack of motivation (i.e., I have had lack of motivation IP on top of my already high level of exhaustion and when that happens I have no interest in doing even the basics, but when I push myself I find I have the energy, which is unlike the times when I try to push myself and realize there is just nothing there.) Good luck in working through this and getting back to enjoying some physical activity.
Claire
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42mo on MP; CFS FMS MCS COPD hypermob IBS/GERD osteopor; 125D48 25D<4;
NoIRs during most daylight outings; Ph1.Dec06 * ModPh2.Jun07 * AbxBrk.Mar-May08
* Ph2.Oct-Nov08 * Ph1.Jan09 * Olm.alone.Jun10
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expate
Member
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Posted: Fri May 15th, 2009 22:23 |
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Hi Claire,
I know. I have experienced that same dichotomy of lack of motivation... when it's just a cover vs. reflection of lack of energy.
I do suspect this is all just IP and longer, hotter days related.
*wishes winter would return*
 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), 25-D 15: D3=15, D2<4 (6/09): 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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shegeek
Member
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Posted: Sat May 16th, 2009 01:17 |
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Claire, first of all thanks for giving me an excuse for not having gotten back for three days I went shopping on Tuesday after my post, and have been a vegetable ever since. I am getting some energy back, although it's never as much as I want, and still having IP although it is more subtle. So I tend to not know when I'm overdoing it until after the fact.
Second, now that you mention it I used to have creepy thoughts like that all the time! Just seeing violent things go by in my head, involving myself, others and nonexistent people, being mesmerized by flashing scenes of it when I was kind of frozen with brain IP. I learned to put it out of my mind and forget about it as soon as it was over. Thankfully I am experiencing a lot less of it now, but I guess I could watch for it as a signal.
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FMS,IBS,osteoarthritis,osteopenia, hypertension/ 1,25D/25D=45/44 (10/04), 44/13 (1/05), 36/8 (7/05)
25D<4 (6/06) 25-D=5 (4-08). Avoid light & D w/NoIRs 11/04 Benicar 40mg/q4h(since 1/27/05) Phase 3
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Adrianne
Member
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Posted: Sun May 17th, 2009 01:29 |
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I have lots of motivation but just can't do anything about it! That's my problem and it gives me lots of stress. So much has to be done around the house and it's just not getting done. This evening it came to my attention that my winter wreath was still on the front door and that I still had Christmas potpourri in a crystal bowl on my coffee table. I managed to replace them with season-appropriate items but that's about all I accomplished today in regards to home maintenance----and I had such ambitious plans earlier. A nap won out. At least I manage the grocery shopping, cooking and basic cleaning but those activities usually leave no more energy to do anything beyond what is absolutely necessary. I just can't wait to clean out, throw out, organize and plan for those maintenance projects which need to be done so desperately. Meanwhile, I'll just shy away from having guests over for as long as I can.
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CFS Ph1Jan07 ModPh2Apr07 Ph2Aug07 Ph3Feb08 L-tryptophan benadryl famotodine 25D9.1(Mar07) NoIRs limited outings covered
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marion villa
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Posted: Mon May 18th, 2009 23:31 |
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Girls:
My appreciation has changed a bit from my first times in the MP.
My first herxes were intolerable, I was near death really,I developed no hunger at all, every odor ,even the ones I used to like, seemed gag to me and I even vomit with the smell of food! that is weird because food is my favourite thing... 41°C constant fever and shivering, strong body and head, aching and tachicardia, it felt really HELLISH and dangerous, so I learned that was not the correct way,it took me about 4 weeks and 22 pounds off to realize that, I couldnt stand or talk loud.
Now that i have walked the path I would say intolerable is when I can do nothing more that to stay in bed and sleep in the dark room.In days like this my normal hunger level decreases too, but not as when I started ( I told you before)
hugs to all of you.
marion
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Lupus, RA, erythema nosodum, skin ulcers, MP 11/07, voltaren, paracetamol advil, almagato,Tylex w/codeine, NoIRs, limited outings covered up,Ph 2 started 20 april 2008, 25D<4ng
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Adrianne
Member
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Posted: Tue May 19th, 2009 02:11 |
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Marion, you are so right! Our definition of "intolerable" definitely changes as we progress in our healing. When I was at my sickest, well before starting the MP, I had to remain in bed most of the time. I was able to get up for a couple of hours at a time but was too feeble to really be able to do anything. My liver even hurt when I walked. I remember being on the phone and the hand that I was holding the receiver with would cramp up and stay in the holding position even after I hung up. My mental abilities had deteriorated so much that there were times when if asked what my name was, I had to pause a moment to think of it. I also remember how hard it was for me to drive which I had to do on occassion. I had to think painfully of every move which I needed to make because nothing was automatic any longer. I did like the feeling that I got when I pressed on the gas pedal, however. It gave me a feeling of power, or maybe a better word is strength, even though I had none in my body. I, also felt that I was getting closer and closer to death and I worried about my children. As I have progressed through the MP many of these symptoms have re-visited me. For example, I've pretty much always have had to deal with cardiac pain but when I started the MP, the cardiac pain happened more frequently and was very intense at times. Now THAT was quite intolerable and scary as well.
Now that I have progressed through the MP for over 2 years, and my strength and abilities have increased, my expectations have soared! Now I notice all the things which I have neglected for so long, things I couldn't even think about before. So now, I find it quite "intolerable" to not be able to keep up with homemaking as I would like to. Mmm, it truly is amazing how our perspective changes!
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CFS Ph1Jan07 ModPh2Apr07 Ph2Aug07 Ph3Feb08 L-tryptophan benadryl famotodine 25D9.1(Mar07) NoIRs limited outings covered
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eClaire
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Posted: Tue May 19th, 2009 02:23 |
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| One friend of mine calls that desire to do more after having been able to do so little for so long "greediness" We get greedy for health! When we ought to be praising the universe, we're saying, "Buuuut I wanna do THIS NOW!" This kind of greed I can tolerate. I think it shows a healthy desire to return to the land of the living!!! So yeah our toleration level changes in all areas. Claire
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42mo on MP; CFS FMS MCS COPD hypermob IBS/GERD osteopor; 125D48 25D<4;
NoIRs during most daylight outings; Ph1.Dec06 * ModPh2.Jun07 * AbxBrk.Mar-May08
* Ph2.Oct-Nov08 * Ph1.Jan09 * Olm.alone.Jun10
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Adrianne
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Posted: Tue May 19th, 2009 02:40 |
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"Greedy for health"! Now that sounds like a very good place to be. I am much encouraged
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CFS Ph1Jan07 ModPh2Apr07 Ph2Aug07 Ph3Feb08 L-tryptophan benadryl famotodine 25D9.1(Mar07) NoIRs limited outings covered
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marion villa
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Posted: Tue May 19th, 2009 04:56 |
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no one has said it better than you Claire!
I felt so near to death I even talked to my husband about my will and all that!!
ahhhhhg
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Lupus, RA, erythema nosodum, skin ulcers, MP 11/07, voltaren, paracetamol advil, almagato,Tylex w/codeine, NoIRs, limited outings covered up,Ph 2 started 20 april 2008, 25D<4ng
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expate
Member
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Posted: Sun Jul 19th, 2009 17:46 |
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I wasn't sure where to put this comment, so...
Two observations:
1. Massage really can wipe you out. I'd read reports by various people on the MP that it really increased IP. I had a massage Friday morning and each day gets "worse". I woke up this morning, after having muscle spasms in the night, walking as if crippled. I am actually happy because my physical IP has been pretty weak.
2. I've knocked my Mino back to 50 mg in hopes of losing the apathy that plagues me. It worked. I've decided to stay here for a little until I can regain some normalcy in my life. A couple months back I cut my Mino in half to 50mg and was able to exercise and get some things done. Then I moved the Mino up to 75 mg. Hello apathy. So, I'm at 125 mg Zith every 10 days and 150 mg Clindy and 50 mg. Mino every other day. Hoping that's good enough. For now.
Off to vacuum!!!
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), 25-D 15: D3=15, D2<4 (6/09): 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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Cynthia Schnitz
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Posted: Sun Jul 19th, 2009 18:51 |
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| I know the current view of massage is that it helps to distribute the antibiotics more deeply into the tissue. But I have an alternative theory. What if the massage breaks up bio films or fibrotic tissue, thus releasing bacteria to be seen by the immune system? Seems that this would cause a response at any time relative to the dosing schedule, where the penetration theory would be effective while the blood levels are high shortly after taking antibiotics. Food for thought, Cynthia
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MP start 10/08 (no breaks) | Spondylitis 97, early Diverticulosis 98, early AMD 08, Calcium anomaly 95, TypeII Diabetes(?) 02 | 25D=10ng/ml 10/10, (preMP 125D/25D=47/43) | My progress
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eClaire
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Posted: Sun Jul 19th, 2009 19:16 |
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Cynthia, I like your theory.
I had a very bad experience nearly 3 years before starting the MP. While I've had pain in my hands as long as I can remember, I went to a hand surgeon to see about my trigger fingers--on every digit. (Turns out they are way too advanced, with surgery now out of the question and the "only" alternative he said existed is steroid shots, which by then I had finally learned to decline.)
However, from just his very gentle examination, the pain in my hands skyrocketed and did not calm down some until I went on the MP. Imagine had I let someone who did deep tissue massage get ahold of my hands?
At any rate, I believe that as you said, the manipulation may have broken biofilms or disturbed what was happening in the spots that are creating the trigger fingers enough to cause my immune system to turn its attention to the bacteria in those areas of my hands. Whew! While I could have done without the additional hand pain, finally my immune system was paying attention to an area where I was losing the war.
ClaireLast edited on Sun Jul 19th, 2009 19:20 by eClaire
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42mo on MP; CFS FMS MCS COPD hypermob IBS/GERD osteopor; 125D48 25D<4;
NoIRs during most daylight outings; Ph1.Dec06 * ModPh2.Jun07 * AbxBrk.Mar-May08
* Ph2.Oct-Nov08 * Ph1.Jan09 * Olm.alone.Jun10
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