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Joyful
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Posted: Sun Jan 10th, 2010 06:32 |
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Hi treefrog. 
I think I have read that some others noticed a change when switching from one kind of olmesartan to another. An increase in symptoms would indicate an increase in IP/herx, so maybe the generic was not as effective?
You probably should review the managing immunopathology article in the MP knowledge base. (Search for it at http://mpkb.org ).
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treefrog
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Posted: Sun Jan 10th, 2010 19:31 |
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Hi Joyful,
Thankyou for the link. I understand that the swap to olmesartan may be giving me more IP which may be why i feel an increase in symptoms, however, could it conversely be the case that olmesartan is a weaker antiinflammatory than the olmecip?
Thankyou for replying!
Take care,
Treefrog
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no D supplements, light avoidance
initialD25preMP=18.8 D25Jan09=4.4
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Joyful
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Posted: Mon Jan 11th, 2010 05:53 |
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_treefrog wrote_
...could it conversely be the case that olmesartan is a weaker antiinflammatory than the olmecip?
I doubt it.
Dr. Marshall is working on some related questions right now, so keep an eye out for posts in the next 4-8 months on formulations.
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treefrog
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Posted: Fri Feb 5th, 2010 18:11 |
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Hi everyone,
Since my last post i have stabilised on the olmesartan - took a while (about 3 weeks) of going on 4 hourly but im now back to 6 hourly. Think i was fatigue and neuro herxing quite a lot due to the swap in benicar and panicked!
I'm now on 100mg mino, 125mg zith, 40mg benicar 6 hourly, clind 1/4+1/8+1/32 (sorry about the conveluted clind doses but im increasing in very small doses!)
Right now main herxes when i increase doses seem to be;
- neurologically, depression, low focus/concentration, intensely feeling, hopeless, pointless, very insecure, alone, socially withdrawn (although i dont have anyone else to socialise with really except my family but its a general feeling), cry a lot, frustrating, anger, rage, get overwhelmed really quickly and easily.
- fatigue - although GREATLY REDUCED comes back when just increased doses. Usually linked to thumping in the head though. Generally not fatigued anymore when im not having any problems with my head.
- bowel - MASSIVELY improved, although still bloating when increase abx. But soooo much better!
- Hard abdomen - still have a hard part of abdomen predominantly in the center and on right side of abdomen. Assuming just bowel inflammation - comes and goes with IP.
Aim; Hoping to be on 1/2 clind by sometime in March.
Hope everyone is progressing well!!
Take care,
Treefrog
____________________
IBS, PCOS, OCD, fatigue, anxiety, bitten by tick lyme, food sensitivities
no D supplements, light avoidance
initialD25preMP=18.8 D25Jan09=4.4
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Joyful
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Posted: Fri Feb 5th, 2010 23:17 |
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Hi Treefrog.
It's good to read of your improvements.
Have you tried cooking from your new cookbook (Christmas gift)?
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treefrog
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Posted: Sun Feb 7th, 2010 12:33 |
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Hi Joyful,
Yeah i've been cooking from it almost non-stop really! I've explored most of the recipes (some we can't have as they include fish) so i've started inventing a bit. Some going horribly wrong but some are really good! Most of them use ground almonds or coconut flour. Made a lovely pizza as a treat last week and a foccia in early jan mmm.... have been experimenting a bit too. But doing it all without sugar and simple carbs. Trouble is... i keep experimenting and finding really good combinations and recipes and i keep forgetting to write them down!
Hope you're progressing well?
Take care,
Treefrog
____________________
IBS, PCOS, OCD, fatigue, anxiety, bitten by tick lyme, food sensitivities
no D supplements, light avoidance
initialD25preMP=18.8 D25Jan09=4.4
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Joyful
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Posted: Mon Feb 8th, 2010 04:24 |
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Sounds good!
I've been making an apple crisp with an almond crust and it is delicious. 
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treefrog
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Posted: Sat Feb 27th, 2010 22:24 |
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Hi All,
I've got a bit of a stressful week coming up so thought i'd write an update so far.
I'm on the same med levels with clind at 1/4 + 1/8 + 1/16 (am nearly on half a clind tablet)
Main herxes;
- NEURO. Awful brain fog. massively stressed. big headaches. fatigued but al eminating from the head if that makes sense? depression. bad thoughts. apathy. lack of motivation for anything. moments of suicidal thoughts but not as frequent as when i moved up last time (small improvement). total inability to work, concentrate, focus on anything, retain ANY information. Someone will sya something and i'l just blank out after the first word and have to ask them to repeat it a couple of times before i can even begin to assetain what they're asking me/ telling me.
- fatigue still MUCH improved overall but comes back in bits when im herxing badly - especially have neuro related fatigue. i don't know if anyone understand what i mean when i say fatigue emminating from my head but i dont really know ho to explain it any other way.
- bowel - has been a bit dodgey recently and bloating comes back when i herx as usual
- appetite is really annoying me - desire for food is through the roof. i dont seem to be able to stop myself from over-eating at the moment, even when im not remotely hungry. This really distresses me. I haven't had a food related panic attack in a long while (yey) but have felt close at points since increasing abx. Focusing on body image a fair amount at the moment too.
- eyes dry and stingingnd end
- woke up in the middle of the night a few nights ago with a burning throat spreading to my sinuses - hoping that's the tonsillitis being dealt with!
- Also had a runny nose for the past few days now and painful ears. The type that are painful, sore and really itchy but you know you just can't get rid of it! annoying huh!
- painful bladder and bowel in general (and at times, liver)
At the moment i have a series of exams and practicals that i have to complete at school for my bio Alevel. I had my first one last wednesday. Went into school no problems wasnt feeling too bad but when it came to starting it i started feeling really stressed. And ended up having a panic attack in the middle of it. I left the lab before it got too bad in front of everyone. But in the hallway i just wanted to leave and quit everything. I couldnt remember simple facts or even follow simple instructions. That was a horrible day.
Since then i've been really worried about this week coming as iv got another 5 sessions until next monday pm. And i just cant retain any information. Iv been trying to revise all day and i STILL can't remember ANYTHING. I'll read the paragraph or even scentence and by the time iv reached the end, iv forgotten the beginning of it! I really just want to quit it so i can stop stressing and feeling so rubbish but i feel really bad quitting it. Iv been ill throughout all of my exams so far and i dont want to flake out of something else. I just feel really useless. I dont know if i can emotionally hold out till next monday and i dont know how many more hits my selfesteem can take if i keep getting things wrong and failing everything. I;ve tried asking teachers for help - multiple times but they dont understand why i need more help and explaining. They just wont help. I feel really trapped. Im already at school a year after i should be and i just feel out of place, with no friends there, noone understanding me or my situation and all of them thinking im just really thick. And the really sad thing is im trying SO hard to understand and learn the material and am so frustrated its just not going in!! I spend most nights crying over it and just wishing i could curl up into a ball and disappear. But i need qualifications. Otherwise life seems even more hopeless, i cant see a way forward without getting them. PLus i think people around me will look down on me for not going the "proper way". Im sure this part is just my paranoia but i cant help but feel it.
Sorry for the ridiculously long rant, next time i say quick update i will try to stick to my words!!
Take care everyone,
Treefrog
p.s. Joyful - am still enjoying the baking - apple crisp sounds great - i made a similar thing a while ago with nectarines instead, also good - also made a vanilla+strawberry cake for my birthday last tuesday and have made an apple tart for my birthday meal tomorrow! Helps take my mind of things and destress, even if just for a little while. Although should probably cut back soon with my eating as it is.
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no D supplements, light avoidance
initialD25preMP=18.8 D25Jan09=4.4
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Sallie Q
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Posted: Sun Feb 28th, 2010 00:31 |
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just do the best you can, ok
some of the best thinkers in history were regarded as stupid by their fellow students :-(
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bethers
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Posted: Sun Feb 28th, 2010 04:20 |
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Hi treefrog,
Sorry to read about all the stress youre feeling with school. Have you considered cutting back on or dropping clindy?? It may help you get through your exams. I know when I was on clindy I had a difficult time thinking and especially reading. I also had difficulty when getting to the end of the sentence and forgetting what the beginning was about. Now (with no clindy) I am able to read books and actually follow the story line.
Hope this coming week goes smoothly whatever you decide to do.
Beth
____________________
Lyme? (clinical dx Jul07) CFS? fatigue on and off since 1997; cognitive, memory, verbal & word finding issues since Aug07. MPJan09, ModPh2Mar09, Ph2Aug09. 125D:49, 25D:45 Aug08; 25D:18 Jan09; 25D:16 Mar09; 25D:10 Aug09.
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treefrog
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Posted: Fri May 28th, 2010 16:53 |
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Thankyou Sallie and Beth
I am going doing exams again now so am reading you posts and taking heed from your advice once again - it helps
Beth, this time i have stayed at the same level of abx for the last 2 months and will continue to do so for the next month - it seems to be working to keep a fair level of stability. i also have that reading problem, sometimes have to reread a paragraph for ages before the meaning finally sinks in!
I would just like to add that I am mainly posting on the main site at the moment in case anyone is following my thread. Just so you know i havent disappeared or stopped the MP or anything, as some people have asked.
http://marshallprotocol.com/view_topic.php?id=13709&forum_id=35&highlight=treefrog (i'm not good with technology so i hope this works?!)
Take care and hope everyone is recovering!
Treefrog
____________________
IBS, PCOS, OCD, fatigue, anxiety, bitten by tick lyme, food sensitivities
no D supplements, light avoidance
initialD25preMP=18.8 D25Jan09=4.4
Ph12ndNov08 Ph2Jan09-30thAug09 Ph330thAug09
OnPhase3
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Marysue
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Posted: Mon Jul 5th, 2010 23:44 |
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The following post has been moved here from fix22's thread in order to maintain continuity/history for treefrog's progress. treefrog's mom (fix22) posted this for her there:
I wonder if someone is free to help me figure out what to do about my daughters worsening bowel IP?
She normally posts as 'treefrog'. At the moment she is on holiday and doesn't have access to a computer, otherwise she would be asking you herself on her own thread.
She has been on the MP for 20 months (age 19)and until very recently was happily plodding along on 40mg benicar 6hrly, mino 100mg 48hrly, zith 125mg every 10 days and clind 75mg 48hrly. No other meds taken.
A couple of weeks ago she started to experience ovarian and bowel IP (with a heavy period at the time) which was intolerable. She had an U/S scan at the hospital which showed cystic ovaries (both) and a very inflamed bowel mainly in the ileo-ceacal portion of the large bowel, the ascending colon and lower descending part of the colon.
She had already increased her benicar dose to 40mg 4hrly with 20mg S/L, sometimes when intolerable taking the benicar 3hrly, but the effect was minimal at best. The only med that worked was Ponstan (mefenamic acid) which seemed to calm her whole abdomen temporarily (a few hours). This med is not recommended on the MP, but this was an intolerable situation and her prescribing Dr allowed it.
Since that time her bowel will not settle, it continues to be very irritable, not working at all efficiently. She is very bloated, feels sick, lacks an appetite, is in a lot of pain, etc. She is also feeling very low and fed up because of this. Her diet remains the same, MP compliant (scd diet). Last D25 was <4. She is covered up in the sun with suitable clothing, hat, noirs and zinc oxide cream, is drinking plenty of water and resting as much as her bowel allows.
She has lowered her zith to 62.5mg and her clind to 37.5mg, but so far there has been little if no relief. she continues on 40mg benicar 4hrly with 20mg s/l as well as mino 100mg 48hrly.
QUESTION: What should she lower next? Is it safe to lower the antibiotics all at once?
I have read somewhere that the mino shouldn't be lowered. Is this correct?
Is colofac, mintec or any anti-spasmodic allowed on the MP that could help her palliate this problem right now (at least temporarily) as the benicar isn't holding it sufficiently?
I should also mention that all other IP is very minimal.
Any help/advise asap would be greatly appreciated (so that I can pass it on to her). Thank you, fix22 on behalf of treefrog .
____________________
Thanks Dr. Marshall and staff for all the support!
CFS/FM '95; infert/endomet '02; hypotension; cardiac IP; start light restrict. Oct08; 125D=70 25D=30 (Feb09); Benicar26Apr09; NoIRs, low light, no sun; 25D=10 (Jun09); 25D=5 (Nov09)
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Marysue
Board Staff
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Posted: Tue Jul 6th, 2010 05:27 |
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fix22,
Sorry to hear that your daughter is having such a hard time. Getting through an intolerable IP is no fun and finding a way to get back to tolerable is of utmost importance. It sounds like you are on the right track so far.
If you haven't already done so, please read through the MPKB page on managing immunopathology:
http://mpkb.org/home/mp/managing_immunopathology
Backing off the abx is the next most obvious step. I would recommend stopping the clindy immediately since that should be out of her system within about 48'. Maintain the mino for now at 100mg Q48' since that is generally known now as a palliative "sweet spot". Then, reduce or stop the zith completely as well--probably just stop it since she's already gone to a lower dose. Obviously, it's going to take awhile for the zith to get completely out of her system, so she may still get IP from that.
First, see how she does with those changes. If necessary, more frequent mino could be used to palliate, but for now, making one change at a time will help to see which changes help the most.
As for getting more immediate palliation, has she tried either quercetin or guaifenesin?
Keep us posted--hope she feels better soon. :/
Marysue
____________________
Thanks Dr. Marshall and staff for all the support!
CFS/FM '95; infert/endomet '02; hypotension; cardiac IP; start light restrict. Oct08; 125D=70 25D=30 (Feb09); Benicar26Apr09; NoIRs, low light, no sun; 25D=10 (Jun09); 25D=5 (Nov09)
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Marysue
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Posted: Tue Jul 6th, 2010 05:58 |
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I forgot to mention that during my 8 months of struggling with severe symptoms while waiting to get started on the MP, I had lots of bad IPs with my right ovary and the ileocecal valve area (which is in the lower right abdominal area). I found a specific massage technique for supposedly "resetting" the valve that gave me almost immediate relief every time it acted up.
The instruction for the technique is located on pages 265-7 of Donna Eden's book Energy Medicine. You don't have to have any knowledge or interest in the alternative field of energy medicine to benefit from it. It's an entirely physical massage procedure and the instructions are detailed enough for anyone to follow along. You can probably find the book at any major bookstore and most libraries. (or call me and I'll read it to you. )
____________________
Thanks Dr. Marshall and staff for all the support!
CFS/FM '95; infert/endomet '02; hypotension; cardiac IP; start light restrict. Oct08; 125D=70 25D=30 (Feb09); Benicar26Apr09; NoIRs, low light, no sun; 25D=10 (Jun09); 25D=5 (Nov09)
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Joyful
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Posted: Tue Jul 6th, 2010 16:28 |
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Hello & sorry about the current trouble for treefrog.
Marysue's ideas are excellent! I would add that frequent minocycline is a palliation worth trying (you should know within 24 hours if it's helping).
Also, consider gentle foods, like broths (home made broth/stock is best), gelatin, and other soothing foods for nourishment while working out how to best palliate.
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Deedee
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Posted: Tue Jul 6th, 2010 21:42 |
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Hi --I had some intolerable IP on Zith when I entered Phase II (renal labs, muscle aches, swollen nodes) and then on Clindy when I entered Modified Phase II again (severe muscle aches, swollen nodes) and both times my physician recommended that I drop back to 50 mino for 60 days. All returned to normal each time. She may want to check with her doctor in regard to this strategy.
http://mpkb.org/home/mp/managing_immunopathology"
"Typically, reducing or stopping one or more antibiotics is the most effective way to manage immunopathology. "
____________________
Sarcoidosis lymphopathy (July 08) | 125D53 25D54 Jul08 | Ph1Aug08 Ph2Nov08 Ph1Mar09 ModPh2Aug09 Ph1Sep09 ModPh2Oct09 Ph1Dec0| ModPh2July10| 25D24 (Nov08) 25D25 (Feb09) 25D15 (May09) 25D14 (Dec09) 25D11 (Mar10)
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treefrog
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Posted: Wed Aug 11th, 2010 09:53 |
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Hi All,
Thankyou for your all you advice on how to reduce the bowel IP. Unfortunately the IP did put a fairly massive downer on my week away, however the ever so fine silver lining was that it was cloudy all week - yey!
My mum called me when I was away to let me know that you'd replied and what yourselves and our MP doc had advised so we decided that I'd come off clind completely and half the zith dose to 1/4 of a full tablet. I've stayed on mino 100mg (48 hourly). Started magnesium 200mg.
It took a long while to get the IP down to a more tolerable level but even now the smallest things trigger a load of IP off, eg if there's a shred of garlic anywhere in my food - bloating, too much activity - bloating, slightly stressed - bloating. I think there may be a pattern there!
I attempted the SCD intro diet again (I ate chicken stock, chicken, egg whites only) for about 6 days. My IP worsened and I became incredibly constipated. I introduced some nuts and veg back in but was still constipated. So I went for a colonic after another 4 days. I went to 2 colonics. Initiallly massively skeptical whether they'd work at all. But I went in massively bloated and feeling horrible, sick and low (mood wise) and came out after the second session, feeling overall much brighter, happier, less fatigued, much MUCH less bloated! It was great - even the hard lump in my adomen was reduced (inflammation of matter - I dont know?).
That was about 3 weeks ago. However now i'm bloated again. I am at day 29 of my cycle and I tend to get this abdo inflammation increase around this time so I'm not completely at a loss. I have weaned down to magnesium 50mg, and after 5 bowel movements yesterday (which I am SOOO not complaining about!!) mum suggested I decrease the Mg a bit.
My head and energy levels have been quite a bit better recently (when my bowel isn't playing up). I started karate for one hour once a week too. Have had to quit that for 5 years due to ill health and it felt so strange going back. Im taking it very slowly and only doing what I can manage for now.
I hope everyone else is recovering well.
Take care,
Treefrog
____________________
IBS, PCOS, OCD, fatigue, anxiety, bitten by tick lyme, food sensitivities
no D supplements, light avoidance
initialD25preMP=18.8 D25Jan09=4.4
Ph12ndNov08 Ph2Jan09-30thAug09 Ph330thAug09
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bethers
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Posted: Fri Aug 13th, 2010 02:51 |
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Hi Treefrog,
Im sorry youve been having so many GI issues. But excited to read that you are interested in SCD. For me, the SCD in addition to MP has catapulted my recovery.
Ive been doing scd for 5+ months. It has helped me tremendously (i need to post an update in my thread actually) but I have a small tip for you that worked wonders for me in the beginning of scd.
A few times my GI felt absolutely miserable: got bloated and felt 'stopped up'. I made a drink of water and baking soda (about 1 spoonful in 4 ounces of liquid) I would drink it down in a few gulps. In less than 30 minutes I would start to burp (productive, settling burps) and soon after would be in the bathroom. These drinks always managed to solve my stopped up feeling. I havent experienced this feeling in 3-4 months.
By the way, I dont think you should do the scd intro diet more than 5 days (I think I did 3-4 days). I read that here on the pecan bread website (http://pecanbread.com/p/how/introdiet.html) You may have already seen this site but it has such good info and always good to remind yourself. After the intro you can add some veggies. Puree butternut squash and cooked spinach were some personal favorites of mine.
I hope symptoms become more manageable for you.
Take care,
Beth
____________________
Lyme? (clinical dx Jul07) CFS? fatigue on and off since 1997; cognitive, memory, verbal & word finding issues since Aug07. MPJan09, ModPh2Mar09, Ph2Aug09. 125D:49, 25D:45 Aug08; 25D:18 Jan09; 25D:16 Mar09; 25D:10 Aug09.
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treefrog
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Posted: Wed Aug 18th, 2010 12:23 |
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Hey Bethers,
Thanks for your post! Great to hear anothers experience!
Well one month ago i started the SCD intro diet for 5 days after reading pecanbread. In a typical day i ate 3 egg whites, chicken stock, some beef or chicken. That was it. I didn't have a bowel movement once in the 5 days. I started to add some more veggies (pureed squash - a fave too ) and spinach.
IP went nuts and felt so tired and drained constantly, weak, dizzy, sick, hungry, craving food. I took all of this as a good sign that some serious killing was going on. However, I didn't have a bowel movement at all and even when i started adding veggies - nothing. Days 1-3 my stomach went practically flat - minimal bloating etc but after that the bloating started to increase as the constipation did.
I ended up going off the diet, starting magnesium supplements and having 2 colonics to remedy the situation.
I love the idea of the diet and I have no problem sticking to it EXCEPT for the constipation. I just can't handle it. So for now I've just been back on high protein/fat and v low carb (MP diet). I'd love to try it again but i'm quite scared of what the implications on my bowel short term are going to be.
How did you find the intro days? Did this happen to you too? I know that a lot of people who do SCD have diarrhoea as a main problem but I rarely read about anyone who's massively constipated on it and how they coped. How is you bloating etc now, after 5 months into it? What foods are you able to have now?
Take care,
Treefrog
____________________
IBS, PCOS, OCD, fatigue, anxiety, bitten by tick lyme, food sensitivities
no D supplements, light avoidance
initialD25preMP=18.8 D25Jan09=4.4
Ph12ndNov08 Ph2Jan09-30thAug09 Ph330thAug09
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treefrog
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Posted: Wed Aug 18th, 2010 12:32 |
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Also, as a general update;
I am still on 100mg mino 48hourly, benicar ranging from 4-6 hourly with subs when needed, zith 1/4 every 10 days.
I'm quite concerned at the moment as I am on day 37 of my cycle and no period yet. I had severe cramps 3 days ago incredibly briefly but took a mefonamic acid and since then nothing. I'm just worried because the last time I missed a period I missed them for 3 months and ended up having an emergency cystectomy. I guess i'm going to have to wait another week or 2 and then go for a scan to check that nothing's blown up again!
Before this week (which has been fatigue and neuro IP filled) I was getting increasingly active and was out a lot more, quite busy and putting a bit more stress on my body. This probably has set my hormones a bit askew.
Take care,
Treefrog
____________________
IBS, PCOS, OCD, fatigue, anxiety, bitten by tick lyme, food sensitivities
no D supplements, light avoidance
initialD25preMP=18.8 D25Jan09=4.4
Ph12ndNov08 Ph2Jan09-30thAug09 Ph330thAug09
OnPhase3
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