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eClaire
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Posted: Tue Oct 14th, 2008 07:03 |
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Yes, it is similar, although I also got infections from paint exposures, cat exposures, too much grass pollen.
I stopped allowing people to smoke in my home in 1979. I made the connection about just how sick smoke could make me in 1983 when I was temping. I'd worked in several no smoking places for a while and then took a long-term placement where I was exposed to just my boss's 2nd hand smoke coming from his office.
By 1984 would not accept work anywhere unless they would enforce a non-smoking rule. Imagine having non-smoking rules blamed on you and getting through that. Well, I managed to win over the employees where ever I went to work. I thought I would be a tougher sell when people knew I was the cause of the rule, but even the smokers thanked me. Luckily, like for you, work places eventually followed suit.
I also couldn't accept employment where painting was allowed either, as paint exposures--even relatively minor ones--could put me in bed for 3 to 5 weeks, unless my employer would allow me to work from home for weeks when carefully planned painting took place. So many employers seemed to have to test this by accidentally painting while I was in the building (I don't believe they could grasp the severity of my reaction), and then, they were severely alarmed about just how sick I got. I literally could not remember telephone conversations with them when they'd call on the phone to ask me a question about work. I even had to be accommodated because of paint to take the Bar exam, which meant I took it at a totally separate place (a Circuit Court Judge's library with my very own proctor, which was actually probably the least stressful place one could take a Bar Exam).
I feel like I tap danced my way through my adult working years, constantly begging for one form of accommodation or another.
I believe the early exposure to cigarette smoke just aggravated a growing Th1 illness. It was that and my various exposures to other things that my body could not tolerate that I believe would tip my immune system into major displays of typical CFS symptoms.
At any rate, I relate to your story as you can see!
ClaireLast edited on Tue Oct 14th, 2008 07:07 by eClaire
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CFS FMS MCS COPD hypermobility IBS/GERD osteoporosis 125D48 25D8 Ph1Dec06 ModPh2Jun07 NoIRs limited outings covered up low lux home abx brk 3/2 - 5/25/08 Ph 2 10/29/2008
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Deb Grabetz
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Posted: Tue Oct 14th, 2008 13:16 |
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Claire and Magsmom,
This is all quite interesting! I also spent much of my early days, birth to age 5, at my paternal grandparents and exposed to cigarette and pipe smoke,  he did rollies (rolled his own!). So much that I remember it--the smell, the fog--my grandpa was a heavy smoker. I've often wondered about this exposure and my same complications that you both describe. The MCS sensitivities, the sinus and bronchial problems, bronchitis. For me, having been dx'd with sarc, *smoke is not a common factor as compared to smoking as it relates to lung cancer. *Yet, with these statistics, I wonder how much has been investigated with second hand smoke, its triggers and with consideration, to the effects and treatments that were used, that has in later years contributed to our chronic illness, and our immune systems inability to fight bacteria.
My take on this is, our generation was greatly exposed to smokers when we were juveniles. It was just in the 1950's that the dangers of smoking were made aware to the public. Second hand smoke is among the leading causes of respiratory illness in children, along with causing other respiratory related ailments in children.
Oddly enough, when we lived in the country and heated with wood, my symptoms would flare, in the form of bronchitis. I've posted this before, when my children were young and we took so many home movies, my constant chronic coughing can be heard in the background. When we moved and no longer heated with wood, the coughing soon subsided. We used an airtight woodstove but of course when stoking the fire, smoke would leak into surrounding rooms.
NOTE: Here is some information from the MP site as relating to treating these infections, such as bronchitis.
Every past infection may have added to our pathogen load and the longer term development of TH1 illness. This might be even more common when penicillins are used for infections since they can force a shift to CWD forms.
So, on that note, I particularily remember being treated numerous times for my bronchitis, strep, during my early 20's with Ampicillin and amoxicillin, which are both forms of penicillin. Unfortunately, I cannot remember my very early years and have no one living to ask. (Except for the arghhh...cod liver oil that I do remember!)
Smoking
Take a look at this chart:
1950s: ADVERTISING: "Tar Wars." As early as 1900, 4.4 billion cigarettes were sold in the U.S. alone!
1950: MARKET SHARE:
RANK
BRAND
BILLIONS SOLD
1
Camel
98.2 billion
2
Lucky Strike Regulars
82.5 billion
3
Chesterfield Regulars
66.1 billion
4
Commander
39.9 billion
5
Old Gold Regulars
19.5 billion
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Sarcoidosis/lungs, lymph,liver, GI, neuro, D12542, Ph17/07, MPh2 9/07, B12, cover up, NoIRs, low lux home, not working, 4/07D2511 1/08D25-0 CranialSacral weekly
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Debbie D.
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Posted: Tue Oct 14th, 2008 15:03 |
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I completed Phases 1 & 2 MP but Phase 3 was unable to complete.
I feel 100% better now that I have done protocol but continue to have conditions pop up such as pre-diabetic, mild tachycardia and COPD. I contacted the lung assoc. and they were very compassionate about sarcoidosis as an illness. The COPD could be a result of infant prematurity (2 months early with resp. problems); second hand smoke from parents; damage done by sarc and hereditary (dad and 4 uncles died of lung cancer). Truth is hereditary is like a ticking time bomb ready to set off our bodies.
Thanks guys and good luck on MP. I highly recommend it and am now able to walk without pain, less coughing, etc... Thanks,Debbie
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Sarcoidosis/lungs, Menniers, FM, hypthyroid, GERD, IBS, depression, anxiety, diabetic,heart disease MP 1/05, Ph2 3/06, Cymbalta, Wellbutrin, ativan, Levoxyl, Antivert, Nexium, Detrol, Noir's, limited outings covered up, low lux home, 25D19
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magsmom
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Posted: Tue Oct 14th, 2008 15:36 |
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All those dr appts for nasal infections etc and probably never once made communications to doc about 2nd hand smoke = notes that possibly would have been useful statisitical reporting from all of us.
Now I am wondering if one gets the effects of the stimulant (nicotene?) from 2nd hand smoke that the smoker gets from actually smoking the cigarett? I ask, because I have always been heavily dependent on sugars/caffeine as in coca-cola. Not near as much now as it has tapered. When younger, I was non functional untill I could down a few cokes first thing after waking. Then the 'habit' would contribute to an continued insane amount of consumption throughout the day. If it could have been administered by a drip, I probably would have consumed far less.
I of course would have periods where I would ween off Cola's due to many diets and improved lifestyle strategies. When done, it was the sugar that I tended to crave & substitue through other methods. On this subject, age can be your friend as through the years I have evolved to a much better beverage regimine. Thank goodness I now mostly drink water.
I Only became an occasional coffee drinker within last 7 years, after dating one. Just like a drug, it started out with 7-11 cappuchino - to the " foo foo" coffee house coffee, but lots of sugar and cream to become a almost 'white' consistency. Luckily even though it sometimes goes in spurts, I have kept this as an occasional treat rather than a daily habit. I am now using the splenda and cream instead of milk & sugar - Any other suggestions to healthy this up? (rant, rant, rant - is going into a chatty cathy mode a herx?) Magsmom
Last edited on Tue Oct 14th, 2008 15:41 by magsmom
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FM/Fatigue/Lyme/TMJ/Trigeminal Neur/Migraine/Degen Disc Dis/Sciatica/OsteoArth/Myalgias 125D52.2 Ph1Aug08 Benicar NoIRs low light home exp rt work aprx 30min 25D32.4
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Afternoon Tea
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Posted: Sun Oct 19th, 2008 00:19 |
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Magsmom,
 Yes, I have a suggestion! Agave Nectar! It is an excellent sweetener for coffee, tea, etc. It flows much easier than honey, doesn't have a particularly strong flavor of its own besides being sweet, and best of all, it isn't supposed to raise your blood sugar like sugar. Of course, it is kind of expensive. You can find it either with the honey or where the sugar is sold in the grocery store.
Okay, now someone will probably rain on my parade and tell me what is wrong with this find. 
Moderator Add: A quick google search revealed that Agave nectar (a syrup made from the agave plant) is about 92% fructose and 20% glucose. This fructose content is much higher than high-fructose corn syrup and should be used sparingly. thank you.
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Palindromic RA (Probably early classic RA) | 125D39 |Ph1 3/08 | 25D31 | Synthroid (.088mg due to thyroidectomy) | NoIRs | covered up, reduced lux home |
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Michele MBK
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Posted: Sun Oct 19th, 2008 01:56 |
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Magsmom and Afternoon Tea,
AT is right about the agave nector. It's really good. I never liked lemonade much and now it's one of my favorite options besides water. I sweeten it with Kal Stevia. It's a natural plant sweetener and a very little goes a long way. Yum!
Michele
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RA 125D30 D2516 Ambien Elavil Vicodin low lux home NoIRS cover up Ph1May08
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magsmom
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Posted: Mon Oct 20th, 2008 05:08 |
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Michele & AT
Thanks for the info- this may continue as a research project -
Wouldn't a alternative to table sugar, if used sparingly be considered beneficial as opposed to using processed table sugar ; wouldn't one not feed the bacteria or not as much as table sugar? - - - Truth Known - none, (within their own merit), are good for us in the long run - But I do wonder what their comparison values are.
Although there are critisms regarding the Agave, I wander what they may be in relation to table sugar - as to whether Agave is an improvement and perhaps not feed the bacteria as sugar does.
According to googled articles, Stevia is made from a South American Plant & Agave Nectar is from a Mexico plant. I wasn't able to find a comparison between the two.
I found Splenda recommended on our own MP sight to help avoid sugar. I wonder what differences the three have.
Thus far in my reading it is not real clear the differences between the three in comparison to real sugar. Living foods. com reports criticism on agave being mis represneted as a natural /raw product & compares its chemical structure being a higher sugar fructose/sucrose than corn syrup. This may sum up the agave!!! But still not sure of the complete analysis.
Any other sugar experts / (non sugar) out there!! Isn't there a Ray Charles song about Sugar? Magsmom
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FM/Fatigue/Lyme/TMJ/Trigeminal Neur/Migraine/Degen Disc Dis/Sciatica/OsteoArth/Myalgias 125D52.2 Ph1Aug08 Benicar NoIRs low light home exp rt work aprx 30min 25D32.4
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HeatherK
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Posted: Fri Oct 24th, 2008 13:05 |
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I'm not sure where to ask this , but this looks as good as place as any,
Does anyone know about a dark chocolate called : X chocolate or Xocai, made from UNprocessed cocoa?? It used to be sold by retail, and now by multi level marketing, and advocated by a Dr. Steven E Warren.
Would this chocolate be allowed on a MP diet??
Thanks!
Heather
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CFS for 5 yrs+ /started MP Sept20/07;( 25-D=24ng/ml, 1,25=47.5pg/ml.).. Dec/07(25-D= 14.4 ) Started Phase Two Mar 4/08; Mar/08(25D= 8.8); In blackout home/ wearing NoIRs/ Presumed celiac, wheat,dairy free.
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magsmom
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Posted: Fri Oct 24th, 2008 16:18 |
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Good timing for your question since we have just questioned agave as a sweetner - -
This is a collection from 3 different web sites. Agave is the main ingredient used to sweeten Xocai chocolate - I found out by googling the word xocai - and clicking xocai healthy chocolate - Enjoy Magsmom
http://www.living-foods.com/articles/agave.html
Safe for class="size10 Helvetica10"Diabetics class="size10 Helvetica10". The sweetener in xocai healthy gourmet chocolate is a natural sweetener called agave
Wikipedia: There is some concern about the health effects of fructose, since Agave has a fructose content much higher than high-fructose corn syrup
Agave syrup consists primarily of fructose and glucose.
http://www.living-foods.com/articles/agave.html
excerpts from above living food site are:
The Truth about Agave Syrup: - The Truth about Agave Syrup: by John Kohler
This next section just added as an edit / (left off initial posting) Agave plants are crushed, and the sap collected into tanks. The sap is then heated to about 140°F for about 36 hours not only to concentrate the liquid into a syrup, but to develop the sweetness. The main carbohydrates in the agave sap are complex forms of fructose called fructosans, one of which is inulin, a straight-chain fructose polymer about ten eight to 10 fructose sugar units long. In this state, the sap is not very sweet.
When the agave sap is heated, the complex fructosans are hydrolyzed, or broken into their constituent fructose units. The fructose-rich solution is then filtered to obtain the desired products that range from dark syrup with a characteristic vanilla aroma, to a light amber liquid with more neutral characteristics. Excerpt from: [url=http://www.foodprocessing.com/articles/2007/065.html]FoodProcessing.com
So agave needs to be hydrolyzed so that the complex fructosans are "broken down" into fructose units or it won't be sweet.
Last edited on Fri Oct 24th, 2008 20:50 by magsmom
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FM/Fatigue/Lyme/TMJ/Trigeminal Neur/Migraine/Degen Disc Dis/Sciatica/OsteoArth/Myalgias 125D52.2 Ph1Aug08 Benicar NoIRs low light home exp rt work aprx 30min 25D32.4
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Michele MBK
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Posted: Fri Oct 24th, 2008 19:02 |
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Magsmom,
Thanks for furthering your research on this and sharing it! Agave nector looks like a loser right now. I especially appreciated the following since I have planted a stevia plant, but did not know how to harvest it.
. Use fresh whole stevia leaves. Stevia is an herb that actually tastes sweet but contains no sugar. This herb can be very hard to find fresh, so I personally grow my own. If fresh leaves are not available, get the whole dried leaves or the whole leaf powder. Avoid the white stevia powder and the stevia liquid drops as they have been highly processed.
I'm sweetening with the highly processed stevia at this point. Thanks again for posting this information!
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RA 125D30 D2516 Ambien Elavil Vicodin low lux home NoIRS cover up Ph1May08
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eClaire
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Posted: Fri Oct 24th, 2008 21:54 |
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Oh man, Oh woman, I can't do all this stuff! Thank God some of you have the energy to worry over let alone plant Stevia plants to avoid the processing.
Someone fix me a martini...I think I need a drink.
Claire
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CFS FMS MCS COPD hypermobility IBS/GERD osteoporosis 125D48 25D8 Ph1Dec06 ModPh2Jun07 NoIRs limited outings covered up low lux home abx brk 3/2 - 5/25/08 Ph 2 10/29/2008
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Knochen
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Posted: Fri Oct 24th, 2008 22:49 |
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Frankly, I don't think the processing is a problem in this case. You aren't eating the rest of the leaf for its nutrative qualities, and the pure stevia powder takes a minute portion to sweeten things. I'm not at all clear what you think you are losing (or getting added that's bad) by processing. "Natural" has little to do with this application, and sounds like hold-over thinking from the usual herbal-cure crowd.
Stevia is a great sweetener, no matter what form it's in. Agave's just another sugar source.
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Reiter's Syndrome 25+ yrs, fatigue, joints, muscles, migraine, brainfog| 25D 6 ng/ml |Benicar May06|Ph1 June06|Ph 2 Sept06|Ph 3 Jan 07|NoIRs K-Cream Zinc Oxide cream - Always covered!
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Debz
Member in Phase 2
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Posted: Sun Oct 26th, 2008 03:26 |
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DWD,
I had to see a foot Dr in 02 for Bursitis (Merck's manual-overuse or staph infection), plantar facsitis, fallen arches (peri-menapausal) and a bone spur (calcium build-up?). I had infection in my fingers at the same time (did'nt know I was'nt suppose to work-out with Sarcoid 08, because it would cause inflamation, then severe itching, cracking, then chronic infection). For a year shoes were very uncomfortable and for months I had to brace myself to get up in the morning. Finally I could'nt stand on my feet for more than 3 hrs by Doc's orders. Had to have x-rays, cortizone shots, foot therapy, and othodics . I was also sold shoes that were for flat feet. I was not happy! MP would of been the right treatment for a staph infection.
I have a metatarsal head that gets angery lately @ L-2 Z. Other than that, the R. side of my foot hurts on Days 3-5 occasionally.
Debz
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Dx-Sarc(collagen disorder)/Herpes Whitlow 03, Neuro,sinus,Hyster,ear. Mr Muscle-hayfever,acute/chron bronchitis, pneumonia,hilar adenopathy,liver tumor&lesion,lg spleen,strep throat,thrush, psyco Mp:4/8/08 mino & Noirs,4/28/08 benicar
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Debz
Member in Phase 2
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Posted: Sun Oct 26th, 2008 21:46 |
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Hi Nelda,
This is Debz in Michigan. I get burning and itching around the groin area if I get hot sitting or in fleece/windproof bottoms. When I use to return from my nightly walks, my legs would feel like pins/needles and numb. When I got off the treadmill (5yrs ago) my fingers would swell, start itching, crack, and get infected.
I realize now exercising spreads bacteria and I have to take care of the infection first. I read this basic immunology book and it helped me understand: how bacteria are inherited, survive, the chemicals they release (one is pyrogens-heat), symptoms, lab/ blood/culture tests needed to find them. One thing I noticed as a dental assistant is that patients had a watery salivia. I had none at all, then egg white thick, and now more watery after 7months of mp. It seems like the biofilms hold moisture and thats why I probably felt warm/hot /clammy and could'nt sweat very well. My thyroid went from .87 to 2 something, so 95-100.5 degree temp for a year is now alot better. When I'm itchy, I use a lysine lip vasoline, but I think my liver is doing a better job of getting rid of the foriegn cells that cause hypersensitivity. Maybe the T-helpers aren't as hyper with less of a path load inside them.
It all gets better,
Debz
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Dx-Sarc(collagen disorder)/Herpes Whitlow 03, Neuro,sinus,Hyster,ear. Mr Muscle-hayfever,acute/chron bronchitis, pneumonia,hilar adenopathy,liver tumor&lesion,lg spleen,strep throat,thrush, psyco Mp:4/8/08 mino & Noirs,4/28/08 benicar
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magsmom
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Posted: Sat Nov 29th, 2008 22:10 |
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I have been holding on to a couple of questions - one of which may not be so unusual - as recent post makes reference to itching of palms of hands being a possible herx.
My question itchy spot:
For years I have had a spot on the outside edge of my foot where it thickens, ( not just below my ankle but slightly forward toward the toes) that itches from "way within". It does not seem anything related to dry skin - as nothing topical seems to help. Q- same as TH-1 and itchy palms? I have never known of any other problems in this area so you think it is just an odd nesting spot of any bacteria?
2nd question (s) ? eating:
Seems that whether or not I am real hungry at the time I eat - that within a couple of hours of eating, I can become famished and my real appetite kicks in and it is then that I must really eat something. I have not figured out what triggers these type of episode's. [also - I have found that the later it is when I eat in the evening, and if it is a more heavy than normal meal - the more hungry I am when I wake the next morning. Anyone else with similar oddness? TH!???
Just curious on anyone else's take. Magsmom
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FM/Fatigue/Lyme/TMJ/Trigeminal Neur/Migraine/Degen Disc Dis/Sciatica/OsteoArth/Myalgias 125D52.2 Ph1Aug08 Benicar NoIRs low light home exp rt work aprx 30min 25D32.4
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Debz
Member in Phase 2
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Posted: Sun Nov 30th, 2008 12:27 |
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Magsmom,
I have a swollen,painful lateral tarsal head that has been intermittant for about a month now. Bacteria put off different chemicals. My hunger/cravings varied alot in phase 1.
Debz
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Dx-Sarc(collagen disorder)/Herpes Whitlow 03, Neuro,sinus,Hyster,ear. Mr Muscle-hayfever,acute/chron bronchitis, pneumonia,hilar adenopathy,liver tumor&lesion,lg spleen,strep throat,thrush, psyco Mp:4/8/08 mino & Noirs,4/28/08 benicar
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eClaire
Member in Phase 2
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Posted: Sun Nov 30th, 2008 13:58 |
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Speaking of food cravings, I keep wondering if I am one of the few people on the MP who have little to no appetite.
I know a low carb diet can result in no appetite (at least for me). Also, part of my lack of appetite might be continuing grief after the break up of my relationship.
Given that I lack energy and motivation (e.g., hunger) to cook for myself, I wonder how I am supposed to keep my carb intake low while eating lots of good, organic foods (or even foods that do not have harmful additives) to maintain my weight. (I've already lost over 40 pounds in two years and at 122 lbs, I am darn skinny looking, particularly at this age.)
It is difficult to eat when you do not have an appetite. Food is generally not appealing.
I guess I sound like a major wimp when it comes to this; however, as a very young child, due to a family emergency my brother and I were left for a few weeks with a couple who abused us physically and emotionally. Food, forcing us to eat the same, two items, was one of the forms of abuse they employed. Primarily because they made us eat the same 2 to 3 items in the kitchen while they and their two children ate regular, balanced meals in the dining room. Both my brother and I developed a profound dislike of those foods and certain textures of food as well.
For whatever reason, without the additonal carbs, it is easy for me to turn off to the taste of food or the texture of food and so being a big girl and force feeding myself is not an easy task.
Claire
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CFS FMS MCS COPD hypermobility IBS/GERD osteoporosis 125D48 25D8 Ph1Dec06 ModPh2Jun07 NoIRs limited outings covered up low lux home abx brk 3/2 - 5/25/08 Ph 2 10/29/2008
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suecat
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Posted: Sun Nov 30th, 2008 22:58 |
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Hi Claire,
I have an apetite but have horrid digestion with gas, reflux, constipation - gi tract staying inflamed....so I also have lost alot of weight but for different reasons.
This may sound silly but what about looking at the food channel or food magazines they always make me hungry.
I have found I need to eat some extra carbs than what I was eating as I can't stay warm enough to even get a bath and that's here in south texas.
Can I give you a easy simple chicken recipe. Use boneless, skinless chicken thighs --they are the moistest and tenderest, put in crock pot (small one's fine) and throw on b-b-ques sauce--that's it no extra liquid and only about half a bottle of sauce per 3 lbs of chick. In three hours you will have some really tasty chicken.
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FMS/CFS 125D55 25D32 Ph1Apr08 cal/mag guaifensen gabapentin doxylamine NoIRs covered up low lux home
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eClaire
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Posted: Sun Nov 30th, 2008 23:45 |
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Thanks Suecat for the recipe. (I start stew meat for chili off in a crock pot with just onions and no water b/c I've found it makes the meat more tender.)
I have to keep my carb/calorie intake at about a certain ratio (I make a guess) or else I have serious trouble with despair. I guess I end up killing off more bacteria than my brain can handle. Still, I'm having trouble maintaining weight because I don't want to eat. I imagine my carb intake might affect me as well when it comes to body temperature.
Claire
I think I'm buying myself a pizza tomorrow.
Last edited on Sun Nov 30th, 2008 23:47 by eClaire
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CFS FMS MCS COPD hypermobility IBS/GERD osteoporosis 125D48 25D8 Ph1Dec06 ModPh2Jun07 NoIRs limited outings covered up low lux home abx brk 3/2 - 5/25/08 Ph 2 10/29/2008
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Freddie Ash
Member in Phase 3
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Posted: Mon Dec 1st, 2008 00:48 |
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HI MAGSMOM
This is Fred in WV. Here is my story on the "itchy spot question". Over my life time I had from time to time had a place on my upper left side lip. It seemed to itch deep within the lip, not on the skin. In the last 3 or 4 months I have had this happen 2 times. Scratching will not releive it. So I am sure it is just and IP going on.
On eating, since I started the MP I have had two times that I just lost my appetite. Food would almost make me sick. But my appetite came back each time. Another IP while on the MP. My weight on the MP has stayed 149 to 154 with my close on at the doctor appointments.
One to add to this list is belching gas. I have had this at times on the MP. I have been going through that again this last week.
Remember, we are all in this together and I am pulling for us.
Your friend in Sarcoidosis
Freddie
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Freddie: dx-sarc 2/82 lymph; skin, eyes, joints, esophagus, intestines, spleen, heart,lungs-meds digitek, L-thyroxine, nexium, furosemide, nattokinase36mg,eat cinnamon w/meals,25D-7; 125-D43
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