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Joyful
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Posted: Mon May 11th, 2009 02:35 |
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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 06:30 |
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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 06:41 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 07:11 |
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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
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Posted: Tue May 12th, 2009 02:08 |
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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
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Posted: Tue May 12th, 2009 15:18 |
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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
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Posted: Tue May 12th, 2009 17:06 |
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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 18:00 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 19:07 |
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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
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Posted: Thu May 14th, 2009 22:14 |
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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 01:46 |
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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
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Posted: Fri May 15th, 2009 21:23 |
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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
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Posted: Sat May 16th, 2009 00:17 |
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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
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Posted: Sun May 17th, 2009 00:29 |
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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 22:31 |
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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
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Posted: Tue May 19th, 2009 01:11 |
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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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eClaire
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Posted: Tue May 19th, 2009 01:23 |
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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 01:40 |
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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 03:56 |
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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
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Posted: Sun Jul 19th, 2009 16:46 |
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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 17:51 |
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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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Ph1 10/08, Ph2 12/08, Ph3 6/09, 125/25D 47/43 preMP, 25D14 12/09, Estradiol .75mg, Calcium anomaly(gone?), Spondylitis, early Diverticulosis, early Macular Degeneration(AMD), Type II Diabetes (unconfirmed,PreDiabetes?), returning sense smell
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eClaire
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Posted: Sun Jul 19th, 2009 18:16 |
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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 18:20 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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Joyful
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Posted: Sun Jul 19th, 2009 20:29 |
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Cynthia,
I have another data point for your theory.
This past week my 75+ year old father was out working in the heat of the day for 3 or four hours (installing brackets to hold up an older fence). He made sure to get enough water, electrolytes, etc., but still had very painful cramping in both legs afterward.
He has some of the typical markers for the type of immune dysfunction found in the "diseases of aging" and is not on any type of antimicrobial treatment at all.
So the heat/activity was not allowing for more penetration of antibiotics, he isn't on any. And his activity wasn't necessarily "breaking up" any fibrotic tissue either. (His employment has always been very physically demanding.)
Is something else happening?
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Cynthia Schnitz
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Posted: Mon Jul 20th, 2009 18:23 |
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| Well, then here is a third theory, which might encompass massage and your father's exercise and getting heated. How about the possibility that these conditions stimulate the bacteria to do what ever they do, causing more inflammation. This is not too unreasonable when you think of the effect of certain foods, like cheese or beer, on intestinal Candida that makes them get very active and produce an excessive amount of toxin. This cheese problem was my last vestige of a Candida problem, which was being kept at an inconsequential level with a very low carb diet. So, I can certainly see a possibility of something being a stimulus to the bacteria. Maybe it is a case of a condition that makes their quorum sensing more acute and emboldens them. Cynthia
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Ph1 10/08, Ph2 12/08, Ph3 6/09, 125/25D 47/43 preMP, 25D14 12/09, Estradiol .75mg, Calcium anomaly(gone?), Spondylitis, early Diverticulosis, early Macular Degeneration(AMD), Type II Diabetes (unconfirmed,PreDiabetes?), returning sense smell
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Joyful
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Posted: Tue Jul 21st, 2009 06:46 |
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I can certainly see a possibility of something being a stimulus to the bacteria. Maybe it is a case of a condition that makes their quorum sensing more acute and emboldens them.
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expate
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Posted: Tue Jul 21st, 2009 21:07 |
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Just a massage update. I'm feeling better, nearly back to "normal". I still have a bit of stiffness/mild pain in feet and ankles. Also, feeling like I need more sleep.
IDK, I expect we can't know what's really going on. For me, I think period massages will be a good thing.
Odette
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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: Tue Jul 21st, 2009 22:28 |
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| Well, I know that Barney does not like to hear me talk about doing things that stimulate IP, but I can certainly see using some really good massages toward the end of any combo when IP is very low to get a little more bug killing before going on to the next combo. Of course, since I haven't been there yet, this might not really be practical early in the list of combos tried, so maybe something to do after having been thru all the combos. Cynthia
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Ph1 10/08, Ph2 12/08, Ph3 6/09, 125/25D 47/43 preMP, 25D14 12/09, Estradiol .75mg, Calcium anomaly(gone?), Spondylitis, early Diverticulosis, early Macular Degeneration(AMD), Type II Diabetes (unconfirmed,PreDiabetes?), returning sense smell
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Ebeth
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Posted: Fri Aug 21st, 2009 03:37 |
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My own experience with massages has been that they keep me moving and walking without relying on pain medication. I do still take pain medication on occasion, but if it weren't for massage, I think I'd be taking them on a regular basis, and I'm not sure how well I'd be walking.
I do get a massage every week, which not everyone can do. (If I am going to kill myself working, there have to be some benefits - like affording a weekly massage.) So I think my body is used to it in a way that someone who hasn't had it before or for a very long time might not be.
Also, I have had "bad" massages from massage therapists who made my body feel like it had been run through a meat-grinder. I think some therapists can be too rough on people with muscle pain from chronic illness. A massage therapist who is more sensitive to fibrotic tissue will usually be able to give relief rather than more pain. But it's trial and error while you're trying to find someone. I would just say that if you get a "bad" massage, do not give up trying to find someone whose technique will work for your body.
Plus, you have to be able to communicate to your therapist whether the pressure is too intense, etc. A good therapist will ask you how the pressure is. Sounds easy, but people have a hard time speaking up when they're lying naked (or almost naked) on the table.
Just my two cents. ~Elizabeth
PS - And be sure to drink plenty of water after your massage.
Last edited on Fri Aug 21st, 2009 03:38 by Ebeth
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Sarcoidosis/liver hypothyroid 125D49 Ph1Feb06 Ph2Jun06 Ph3Jan07 break Jul-Oct07 surg Mino only Feb-Jun08 2nd surg Armour thyroid 25D9(8/07)
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Joyful
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Posted: Fri Aug 21st, 2009 04:25 |
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Those are good observations Ebeth. My last 'massage' was a freebie arm/hand massage while waiting for a chiropractic adjustment and I hurt for weeks after. The person doing the massage was probably trained to help athletes loosen up, and in my case that was not the right approach at all. 
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BARNEY
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Posted: Sat Aug 22nd, 2009 23:29 |
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Cynthia Schnitz wrote: Well, I know that Barney does not like to hear me talk about doing things that stimulate IP, but I can certainly see using some really good massages toward the end of any combo when IP is very low to get a little more bug killing before going on to the next combo. Of course, since I haven't been there yet, this might not really be practical early in the list of combos tried, so maybe something to do after having been thru all the combos. Cynthia
Cynthia,
To set the facts straight......if you remember correctly, Trevor told you privately to stop pushing making the IPs harder. I only go by what he says.
Barney
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jcwat101
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Posted: Sun Aug 23rd, 2009 05:01 |
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Of course, we all know that it is often appropriate to stimulate IP with antibiotics as the guidelines say, but I wouldn't recommend using massage to stimulate IP and I suggest only using massage if you really need it and then, very cautiously and not do deeply or intensely.
I would suggest being quite careful about massage because I remember a case a few years ago that a person had a massage and it got them into intolerable, runaway IP that took some time to calm down. One should also be careful about very hot baths that can stimulate IP, sometimes too much.
I think using antibiotics judiciously is what one should stick to if one needs to increase IP. I recommend always erring on the side of caution and going slowly. If you are unsure whether you should increase antibiotics at a particular time, then that the answer is, don't. Give it another round at the level you are at unless you feel really sure you are ready.
Also on a related note, if you are uncertain whether to start at the usual full dose of a phase two antibiotic or wonder if it might be better based on previous responses or your level of illness to start at a lower than usual dose, I suggest going with the lower level.
Joyce Waterhouse
Last edited on Sun Aug 23rd, 2009 05:03 by jcwat101
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20 yrs with CFS/FM/Lyme/IBS, food sensitivities; 1,25D/25D 8/04:64/11 1/05:22/6 9/05:1,25D=12 10/06:22/8, 4/07:25/<4 chewed Ben. 40mg q8h; Mod. P2: 2/23/05, P2: 4/06; P3: 1/1/07
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Cynthia Schnitz
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Posted: Sun Aug 23rd, 2009 07:30 |
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I stand corrected Barney. I should have said 'Well, I know that Trevor does not like to hear me talk about doing things that stimulate IP ............'
I have been thinking that people like Ebeth, that seem to not be affected badly by massage, may be those that have been having messages on a regular basis. If massage for the average person causes biofilms to break up and release bacteria to be seen by the immune system, then those getting regular massages, particularly massages before the MP, may not give biofilms the opportunity to building up to problem proportions. But for everyone else, massages are probably best to be avoided like the plague.
Cynthia
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Ph1 10/08, Ph2 12/08, Ph3 6/09, 125/25D 47/43 preMP, 25D14 12/09, Estradiol .75mg, Calcium anomaly(gone?), Spondylitis, early Diverticulosis, early Macular Degeneration(AMD), Type II Diabetes (unconfirmed,PreDiabetes?), returning sense smell
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k
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Posted: Sun Aug 23rd, 2009 11:16 |
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Personally, I have to be careful with showering. A little too long or a little too hot and it leaves me feeling poorly or stirs up IP. Most of the time this clears up pretty quickly by cooling down. But I have to be particularly careful when my IP is moderate or strong.
regards ,k
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ME/CFS severe menorrhagia & dysmenorrhoea anxiety depression paxil hydralazine Ph1Oct07 25D50Jul07 25D23Oct07 25D13Jan08 NoIRs cover-up low lux home lite exp r/t to work Ph2Feb08
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Ebeth
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Posted: Sun Aug 23rd, 2009 19:51 |
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Just to be clear, my intention is neither to encourage nor discourage someone getting a massage. I wanted to share my own experience because massage - done properly for my body - helps me tolerate the pain caused by sarcoidosis and/or IP.
I have read about other people having bad experiences, and I am aware of the concern that massage may exacerbate immunopathology. That is why I pointed out that I have them on a regular basis and that technique from therapist to therapist can vary quite widely.
In case someone reading this thread is considering trying massage therapy, I think it helps to hear about the range of experiences from as many members as possible in order to make the best decision for oneself.
I have also had trigger point injections, which I find beneficial; but before I had them, I searched for other members who had them to see how it affected them. One of the best things about the MP is the collective knowledge contained on the related MP sites. I am grateful to everyone who is willing to share their experiences because it benefits the rest of us.
Last edited on Sun Aug 23rd, 2009 20:06 by Ebeth
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Sarcoidosis/liver hypothyroid 125D49 Ph1Feb06 Ph2Jun06 Ph3Jan07 break Jul-Oct07 surg Mino only Feb-Jun08 2nd surg Armour thyroid 25D9(8/07)
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Bobbie
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Posted: Sun Aug 23rd, 2009 21:43 |
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Just for additional feedback in the area of massages, I get neuromuscular massages once every 3 weeks to a month and find them very beneficial. I have been getting massages fairly regularly for years so Cynthia's thoughts about massages not invoking as much IP on people who have had been receiving massages previously is true in my case. I have always felt better afterwards (even after the necessary sun exposure to get there and back). It helps that her studio is only 10 minutes away. I feel like my lymphatic system is much less congested, bloating is less, I feel alot "lighter," and I have more energy.
I also like the feedback she gives me on how my body is doing. She knows my body very well because she worked on me before I was on the protocol. She can't believe how much better I am.
I also use a Chi machine, or, as Joyful calls it, a swing machine almost every day, which really helps me alot. When I get really tired or stiff and sore, I use the Chi machine. It moves the lymphatic system and oxygenates me. It's like getting some of the benefits of exercise without exerting myself. Maybe this is another reason why massages don't invoke IP for me.
Just my experience . . .
Bobbie
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CFS IBS atrial fib 125D94 25D60 Ph1Feb08 no meds NoIRs cover up work at home low lux cut food 25D39(Feb08)Ph2May08 25D21.1(June08)
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Deb Grabetz
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Posted: Thu Aug 27th, 2009 13:58 |
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Bobbie,
I have to agree with you as my experience is similar. Probably one of the best things I've done for myself since I've started the MP is hot stone massage. It has helped me immensely in dealing with my recent body aches. There is obviously a lot going on in my muscle and tissue that this helps relieve. I also receive the same benefits from a "not too hot" bath or shower.  Since I never, never had body aches before the MP, I know that there is some intense healing going on and I find that pretty exciting and that it is also something fairly new for me, even after two years on the MP...
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Sarcoidosis/lungs, lymph,liver, GI, neuro, D12542, Ph17/07, MPh2 9/07, B12, cover up, NoIRs,return to work after 2 years off- 4/07D2511
5/09 D25<4
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Bobbie
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Posted: Thu Aug 27th, 2009 19:11 |
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Deb--
I concur with the hot stone massages helping body aches . . . and they are sooooo relaxing. I haven't had one since being on the MP, but before the MP I was receiving them fairly regularly. I also find benefit to the "not to hot" bath or shower. If it is too hot, my weakness and fatigue increases for a couple hours after .
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CFS IBS atrial fib 125D94 25D60 Ph1Feb08 no meds NoIRs cover up work at home low lux cut food 25D39(Feb08)Ph2May08 25D21.1(June08)
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jcwat101
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Posted: Fri Aug 28th, 2009 02:30 |
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One thing I suggest is that if you combine massage with the MP that you work up to the level of intensity of the massage in order to make it less likely to set off intolerable IP. In other words, don't start with anything too intense to begin with. I'm not saying it is without risk for setting off too much IP, but that should help.
It also might be better, if one begins massage to not begin it when the IP is too strong.
In general, it is best to use the MP medication adjustments to try to moderate symptoms -- or at least try that first as much as possible. One wouldn't want to generate overally intense IP unnecessarily and then try to rely on the massage to reduce the symptoms.
Joyce Waterhouse
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20 yrs with CFS/FM/Lyme/IBS, food sensitivities; 1,25D/25D 8/04:64/11 1/05:22/6 9/05:1,25D=12 10/06:22/8, 4/07:25/<4 chewed Ben. 40mg q8h; Mod. P2: 2/23/05, P2: 4/06; P3: 1/1/07
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Chanippo
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Posted: Mon Mar 29th, 2010 12:25 |
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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?
I'll answer these two questions simultaneously, because they are related. In the early days my IP was much worse, I think, but I was also much sicker, so it was hard to differentiate. I think now, sometimes moderate IP is not as tolerable as I once was. I take nights off work now with symptoms that I would have pushed through before. This is partly because i'm getting better, so when my least favourite symptoms return in any capacity (insomnia, fatigue, intracranial pressure), I tend to take time off. However, if I didn't have to work, i'd be able to tolerate more IP for longer.
When do you start looking for the brakes on the train and when do you keep on?
I did this just recently. I started level 2 of phase three and after the third cycle, I felt the IP was going on for too long and I wasn't getting a break from it. Usually, i'll sit with uncomfortable IP for a few days at most, but then I have to start thinking about work so i'll start some methods to dampen the IP. They usually work, but I think that in phase three I might have trouble dampening IP when I get up to the higher doses of abx.
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eClaire
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Posted: Mon Mar 29th, 2010 17:11 |
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Well, I don't work and my experience is very similar to yours. I thought the last year was a breeze compared to the two previous and said I could handle more IP if only my kidney labs would come down and I could push myself (though my kidney labs say I'm having plenty of IP). At any rate, when my immune system went on a bit of a tear--mild compared to the first two years--I couldn't stand it. I wanted my old level of IP back.
I don't know about the phases, as I've been unable to do the abx combo in Phase II, was a major trial. I'm getting plenty of IP on Mino alone now and over a year ago TM suggested I consider doing Benicar alone.
At some point the immune system is supposed to take off on its own... I wouldn't know since mine has run hard from the beginning.
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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Deb Grabetz
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Posted: Tue Mar 30th, 2010 19:53 |
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Claire,
Check out the Quotes thread...You live your life as a Champion and take us all to a higher level, by your example. Thank you for sharing your experiences on a daily basis! Herx? IP? Look out!
Deb
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Sarcoidosis/lungs, lymph,liver, GI, neuro, D12542, Ph17/07, MPh2 9/07, B12, cover up, NoIRs,return to work after 2 years off- 4/07D2511
5/09 D25<4
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eClaire
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Posted: Tue Apr 27th, 2010 03:53 |
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You know it's intolerable IP when... you feel like whimpering all the time and catch yourself complaining every day. Right now, I could use to be knocked out for however long it takes for my left rotator cuff to stop giving me the problems it is giving me--I'm at 7.5 months of pain. The only thing that stopped the pain related to my right rotator cuff was going off of all MP drugs after 8 months. However, I need to protect my kidneys. Even my attempt at Benicar q4h with 20mg in between didn't touch it... oh, it slowed everything else down and that was great! But the rotator cuff... no, it just hummed right along, getting worse by the day.
I think I'm going to open a bottle of wine.
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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Pipistrelle
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Posted: Tue Apr 27th, 2010 06:41 |
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Hugs, Claire... gentle ones to avoid adding to the pain.... this too shall pass. Soon I hope.
Morag
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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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