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Joyful
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Posted: Sun Jul 19th, 2009 21:29 |
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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 19:23 |
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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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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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Joyful
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Posted: Tue Jul 21st, 2009 07:46 |
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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 22:07 |
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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 23:28 |
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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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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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Ebeth
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Posted: Fri Aug 21st, 2009 04:37 |
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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 04:38 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 05:25 |
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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: Sun Aug 23rd, 2009 00:29 |
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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 06:01 |
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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 06:03 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 08:30 |
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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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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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k
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Posted: Sun Aug 23rd, 2009 12:16 |
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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 20:51 |
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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 21:06 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 22:43 |
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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
Support Team
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Posted: Thu Aug 27th, 2009 14:58 |
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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
Member
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Posted: Thu Aug 27th, 2009 20:11 |
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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 03:30 |
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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 13:25 |
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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 18:11 |
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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
Support Team
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Posted: Tue Mar 30th, 2010 20:53 |
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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 04:53 |
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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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