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RM
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Posted: Mon Oct 12th, 2009 04:22 |
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Just re -reading
Its not an exercise routine i have its more stretching muscle etc, walking would actually be more effort. When i think about it i have done this for years (lightly) and it was always an effort,made me feel sick/dizzy at times with stars infront of my eyes and this was before i became totally imobile for 5 months. If i ever had tried to do more it resulted in me having to be off my feet for 3days where i just couldnt do anything.
What had made me post firstly was reading about cardiac involvement as the symptoms were exactly what i was getting, i remember having a lot of this when i first had my sarc.I forgot to mention that also yesterday my jaw muscles became really sore/tired and my swallow reflex seemed to be effected.
Im obv getting some cardiac herx (i think), im just up can feel a little tightness in that area due my next beni now 05.00am. I had moved to 75mg/48hr mino (2 cycles) due the 3rd around 09.00am today, should i back down to 50mg?.
Last edited on Mon Oct 12th, 2009 04:28 by RM
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Sarcoidosis 30yrs ago/ then-shingles/chronic stress/depression/ibs/hypertension/CFS/Fybromyalgia. 13/07/09 reducing D.09/09/09benicar 40mg/6hr.22/10/09 mino 100mg/48hr.
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Cynthia Schnitz
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Posted: Mon Oct 12th, 2009 15:25 |
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| RM, there is something else to consider. Since apoptosis (programmed cell death) has been postponed by the bacteria, and now the over due cells are losing their longevity support, and we have been given to understand that there are other ways cells die during the MP, you may find a period where you lose muscle mass. This has certainly been reported by many, and is nothing to worry about, as at some point it will level off and you will gradually be able to rebuild the mass. But it is probably not a good idea to exercise during this loss, at least that is my guess. And, you will certainly should find a lessening of your abilities during this period. Cynthia
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Ph1 10/08 Ph2 12/08 Ph3 6/09 125/25D 47/43 preMP 25D14 12/09 Calcium anomaly(gone?),Spondylitis,early Diverticulosis,early AMD,TypeII Diabetes(?) MyStory
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RM
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Posted: Mon Oct 26th, 2009 10:14 |
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Hi Guys,
Just updating- had a week of constant herxing-muscle,a little neuro,main one is gut (not sure if its ip or just my ibs flaring up). Anyway gave it a week and it hasnt eased the worst being the actual pain in the butt so to speak from the symptoms .
I am thinking I should back off on the mino and maybe just stick with benicar for a few days as I feel totally worn out,even with sleeping almost all weekendon the couch.Anyone had experience of this one?
Thanks
R
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Sarcoidosis 30yrs ago/ then-shingles/chronic stress/depression/ibs/hypertension/CFS/Fybromyalgia. 13/07/09 reducing D.09/09/09benicar 40mg/6hr.22/10/09 mino 100mg/48hr.
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k
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Posted: Mon Oct 26th, 2009 10:42 |
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There is no problem going to Benicar only - as per the Phase 1 guidelines, and for example Dr M's comments below.
http://www.curemyth1.org/forum2/2946.html
Maureen, The use of properly-dosed Olmesartan (Benicar) is the primary factor leading to recovery from chronic Th1 disease. The antibiotics are only a help to the body's own immune system, and, in any case, once you progress beyond stage 5 the antibiotics lose their effect (see http://autoimmunityresearch.org/stage5.pdf )
Thus, members who remain on Olmesartan, dosed as per the guidelines (http://autoimmunityresearch.org/phase1.pdf ) are indeed still 'on the protocol' and their bodies continue to slowly heal.
Remember, it is your responsibility to manage IP so it is tolerable for you - tolerable while you are experiencing it, and tolerable over the typically several years (or more) that is the MP. You are the best just of what this is for you.
Everything you have mentioned sound like common IP experiences to me. You are encouraged to read the posts of others progress to become more familiar with others experiences. This will help you to understand your own better and become more comfortable. I went through a stage where every new 'herx' I got I ran into the computer and typed it into the search engine.... I haven't come up with one yet that someone else hasn't had (including ones I considered bizarre such as "excess saliva").
All the best.
regards, k
Last edited on Mon Oct 26th, 2009 10:45 by k
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CFS severe menorrhagia & dysmenorrhoea anxiety depression paxil 600mg calcium daily Ph1Oct07 Ph2Feb08 Ph3Sept08 25D:Jul07=50 Oct07=23 Jan08=13.2 Oct08=12.8 Sept 09=10 NoIRs cover-up low lux home lite exp r/t to work
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RM
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Posted: Mon Oct 26th, 2009 11:40 |
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k
Thanks for the info. I know its my responsibility, I read on here every day and dont raise questions at every herx, its just when they are more severe, its sometimes comforting to speak to someone else that has been through or going through the same symptom.
I had the new phase1 doc(essential reading). Did you read Dr M`s post (answer to claire)on benicar and abx a few up in these posts, what do you think?
Thx - I really do appreciate your response.
R
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Sarcoidosis 30yrs ago/ then-shingles/chronic stress/depression/ibs/hypertension/CFS/Fybromyalgia. 13/07/09 reducing D.09/09/09benicar 40mg/6hr.22/10/09 mino 100mg/48hr.
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eClaire
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Posted: Mon Oct 26th, 2009 12:45 |
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Dr Trevor Marshall wrotThe key is to only use the MP antibiotics when one's own immune system is not able to keep up a good pace of killing with the aid of Benicar alone. The other half of the puzzle is trying to make sure that the symptoms one is experiencing without antibiotics actually is bug-killing and not hormonal imbalance, etc. Some of the blood tests, particularly SED and BUN can be a big help in figuring this out. Or if one's sweat starts smelling of ammonia... (that's NO (nitric oxide) release similar to a rising BUN)
I think this part of what Trevor is saying is key. Now, if he could explain more clearly what it means "when one's own immune system is not able to keep up a good pace of killing with the aid of Benicar alone," I think THAT would be helpful. After puzzling through the construction of that paragraph, I think perhaps what he says makes sense if the 2nd two sentences precede the first. Meaning, they are the key to knowing whether Benicar alone is sufficient. If I have misinterpreted, someone please correct me.
At any rate, the second half of that statement is pretty self explanatory. If you are doing Benicar alone and are worried that you are not having IP, SED, BUN, and having your sweat and/or urine smell of ammonia will tell you that you are. If you are not having these indicators and you are still sensitive to abx (meaning not in recovery) and not in Stage 5 (e.g., when "adjusting, increasing, or changing antibiotics to control the amount of immunopathology may no longer be an affective strategy" to manage IP), then some abx is in order.
In the stage 5 document, Marshall also says, "Anyone may, at some point, transiently experience lifestyle-limiting (even debilitating) immunopathology as part of the recovery process." I think this means--outside of the possibility that someone is in Stage 5 (see the Stage 5 document for a better explanation of that phenomena: http://autoimmunityresearch.org/stage5.pdf )-- that sometimes we may have to ride out some rough patches.
This is why I find lab tests to be particularly useful. When I started Zith, I had intolerable gut IP. Now I know there are some people who just gutted () their way through similar reactions. However, I have had emergency surgery for hemorrhoids and surgery for a fistula and fissure and have no desire to repeat that. Now, I might have risked the same and gutted out that IP except for the fact that my BUN and creatinine shot up, telling me I was having very high IP, and so my decision to back down was supported by my lab work. Besides, my urine and sweat pretty much tells me I am having IP. (Rather than smelling like ammonia, I often smell like over ripe limes.)
I hope this helps, Claire
Last edited on Mon Oct 26th, 2009 12:54 by eClaire
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38mo on MP; CFS FMS MCS COPD hypermob. IBS/GERD osteopor.; 125D48 25D<4;
NoIRs during most daylight outings & covered up; home w/o NoIRs
Ph1.Dec06 * ModPh2.Jun07 * AbxBrk.Mar-May08 * Ph2.Oct-Nov08 * Ph1.Jan2009
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RM
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Posted: Mon Oct 26th, 2009 13:10 |
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Hey there Claire,
Good to hear from you again. Its the hemorrhoids that are the main probelm for over a week now and the lack of energy, I thought maybe the lack of energy is just comming from being drained due to the constant pain and discomfort from these. I had remembered reading a post on surgery in these circumstances, i remember now it was your post. My Doc had offered me surgery a month or so ago when this had flared before, but i had questioned him on them returning since my ibs wasnt resolved, so we decided to try different cream, anyhow it resolved without much help until just over a week ago and has been constant agony since, the only real relief is bathing (after the initial few seconds) or lying down.
Thanks
R
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Sarcoidosis 30yrs ago/ then-shingles/chronic stress/depression/ibs/hypertension/CFS/Fybromyalgia. 13/07/09 reducing D.09/09/09benicar 40mg/6hr.22/10/09 mino 100mg/48hr.
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eClaire
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Posted: Mon Oct 26th, 2009 13:16 |
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This will sound odd and I have yet to have to use it (remember, I dropped the Zith because of my labs), but before starting the MP--because I anticipated a lot of gut IP--I purchased a plastic suppository that can be put in the freezer. The idea is to lubricate it and use it to shrink the hemorrhoids. Sounds gross, but I am willing to use it if need be because cold is such a great anti-inflammatory.
Hope this helps, Claire
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38mo on MP; CFS FMS MCS COPD hypermob. IBS/GERD osteopor.; 125D48 25D<4;
NoIRs during most daylight outings & covered up; home w/o NoIRs
Ph1.Dec06 * ModPh2.Jun07 * AbxBrk.Mar-May08 * Ph2.Oct-Nov08 * Ph1.Jan2009
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RM
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Posted: Mon Oct 26th, 2009 15:34 |
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Cheers Claire,
That has reminded me of reading someone elses post on using an ice cube (run under water first to stop freeze burns). Forgot to mention i am also very bloated and a bit nauseous as well, suppose all goes with the gut ip, but the pain in the butt is the worst of it, i reckon it was reaching about an 8 at times.
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Sarcoidosis 30yrs ago/ then-shingles/chronic stress/depression/ibs/hypertension/CFS/Fybromyalgia. 13/07/09 reducing D.09/09/09benicar 40mg/6hr.22/10/09 mino 100mg/48hr.
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eClaire
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Posted: Mon Oct 26th, 2009 16:13 |
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Obviously, with my past history, I empathize. (My fizzure/fistula surgery was put off for months as doctors investigated the possibility of Chron's or cancer... not wanting to make matters worse. AAAAARRRRGGGHH!)
Nausea is common, as well as lack of appetite. If you look at the current threads, you'll see someone else has one about nausea.
Hang in there and do what you need to do, Claire
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38mo on MP; CFS FMS MCS COPD hypermob. IBS/GERD osteopor.; 125D48 25D<4;
NoIRs during most daylight outings & covered up; home w/o NoIRs
Ph1.Dec06 * ModPh2.Jun07 * AbxBrk.Mar-May08 * Ph2.Oct-Nov08 * Ph1.Jan2009
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RM
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Posted: Fri Nov 6th, 2009 05:43 |
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Just updating
Stayed on benicar only for about 1 week and the severe ip resolved, am back to 50mg mino/48hrs- with gut ip but not as bad as before prob about 4. Think i`ll stick at 50mg for a bit.
Hope everyones keeping well.
R
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Sarcoidosis 30yrs ago/ then-shingles/chronic stress/depression/ibs/hypertension/CFS/Fybromyalgia. 13/07/09 reducing D.09/09/09benicar 40mg/6hr.22/10/09 mino 100mg/48hr.
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RM
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Posted: Fri Nov 20th, 2009 04:59 |
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Hi everyone,
just to update again.
Beni q6/40,minoq48/50mg.
Gut ip about 3, over the last 1 1/2weeks i developed rheumatic like pains in my fingers with one of them that i couldnt bend and it cracked really loud. One hand went so white and numb for about 6hrs it felt dead(couldnt feel anything i touched with it). I had tried additional 20mg of beni to try and ease this and fluxuating gut ip. Worked for the gut but not the other. So yesterday i tried 75mg of mino and hey in about an hour the ip in my hands had greatly reduced, gut ip is prob about 2 this morning. Go figure, i was scared/cautious of ramping the mino again because of the severe ip i had before, hopefully this is some more bugs killed.
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Sarcoidosis 30yrs ago/ then-shingles/chronic stress/depression/ibs/hypertension/CFS/Fybromyalgia. 13/07/09 reducing D.09/09/09benicar 40mg/6hr.22/10/09 mino 100mg/48hr.
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RM
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Posted: Fri Feb 5th, 2010 09:08 |
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Guys,
Just for anyone looking in esp new MP`ers, i have not left, just moved on to Ph2. So i thought i would copy my latest post from there with a poignant thought on the good things that we sometimes loose site of and have to stop to think and release that we are indeed progressing.
Just updating;
Beni q6/48, mino q48/25, clindy q48/75(1st last nite).
Herx: muscle spasams/pain 2. Sometimes on the second day these would peak to about 5, but within 15min of taking my next dose they go back to a 2.
Interestingly, the good old butt herx raised its self again, but was pallitiated by the next dose, reinforcing the herx theory.Also I had this red lump came up on my head some months back, it came to a top and burst shortly after the lower bowel abcess resolved.
So to day feeling good herx still 1~2, the fatigue i forgot about prob because its always been with me and is always about 5~8, but i feel like i want to do more.I am working 5 days though it seems to push me to and over the edge, the 30 mile drive each way aggravates things alot(worse in the mornings for some reason), i pallitate with 20mg beni and pain killers when i get in.Itching i also forgot about because its been with me for 12years plus(that long cant remember) its a rash all over both shins and about 4 areas (2"~3"each) on my back.These would flare from 2~8 where they would prevent me sleeping. Over the years my GP sent me for various tests, hospital derma specialists etc but they couldnt identify it. I have noticed some other sarc MP`ers here with this. Is it a direct symptom of sarc??.
Things we forget to take account of through this battle:::
The bladder irritation (constant running to the bathroom 4~5times/nite) has resloved greatly(some nites dont wake at all and others only once).
The 2 meds i took daily for my ibs i havent taken in a couple of months-dont seem to need them.
Hope Everyones Good!
R
Last edited on Fri Feb 5th, 2010 09:13 by RM
____________________
Sarcoidosis 30yrs ago/ then-shingles/chronic stress/depression/ibs/hypertension/CFS/Fybromyalgia. 13/07/09 reducing D.09/09/09benicar 40mg/6hr.22/10/09 mino 100mg/48hr.
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