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Juanita
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| Location: | Alberta Canada |
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Posted: Fri Sep 11th, 2009 19:52 |
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Grits is from corn according to wikipedia. http://en.wikipedia.org/wiki/Grits So you're fine with them. No gluten in corn, thank heavens.
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MCS, CFS, FM, CS, DH, stroke neuro, seizures, skin ca, IBS, eczema, irregular heartbeat| NoIR avoid light and D/ On MP 27 months
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Lee
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Posted: Fri Sep 11th, 2009 19:53 |
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(but I did do the coffee. And a 1/2 valium pill.)
I love it .... We do what we have to do .... Thanks for all your help on the celiac stuff!! Lee
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2003 SARC w/COPD
D ratio-2.13 Ph1-2/05 Benicar| 4/05 PH2| 06 Ph3| D25=5.4 2007-TSH-0.09 probiotics/silymarin/sunlight w/noirs
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Lee
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Posted: Fri Sep 11th, 2009 19:56 |
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| That's what I thought, but they maybe processed in a not so gluten-free place, as so far I have not noted any that say gluten-free. I will look for Bob's RM and other reliable mfg's!! Thanks!! Lee
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2003 SARC w/COPD
D ratio-2.13 Ph1-2/05 Benicar| 4/05 PH2| 06 Ph3| D25=5.4 2007-TSH-0.09 probiotics/silymarin/sunlight w/noirs
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Juanita
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Posted: Fri Sep 11th, 2009 21:45 |
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As you read through a variety of association websites, you'll find lists of products that have been approached for verification and the companies have given their lists of what they know are gluten free, even though the label doesn't say so.
And any company that you are curious about, you can email them and they'll give you their list also.
It's good to start by shopping for gluten free labelled foods, but often you also pay for that extra standard in statement. As you learn how to live this way, you will eventually be able to tell by a quick glance at a label just how safe that product is.
I don't know about the American association, but the Canadian one will sell you a booklet you stick in your purse that has ingredients that are safe, so you can tell faster and faster what isn't.
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MCS, CFS, FM, CS, DH, stroke neuro, seizures, skin ca, IBS, eczema, irregular heartbeat| NoIR avoid light and D/ On MP 27 months
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Lee
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Posted: Fri Sep 11th, 2009 22:08 |
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Great ideas! I will check into our local association even though it is 300 miles way .... When I do move back to the beach though it will be there ... Thanks so much!!! Lee
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2003 SARC w/COPD
D ratio-2.13 Ph1-2/05 Benicar| 4/05 PH2| 06 Ph3| D25=5.4 2007-TSH-0.09 probiotics/silymarin/sunlight w/noirs
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eClaire
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| Joined: | Mon Sep 25th, 2006 |
| Location: | Virginia USA |
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Posted: Wed Sep 16th, 2009 19:45 |
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Don't know if this comes under the thread entitled Unexpected Improvement or Unexpected IP, but I'm posting here and in my PR.
In the last six months, I've noticed that I get a little boost of energy after I take the abx. No biggie, but nice to see.
I've been one of those people on the MP who have gotten my worst IP in the four to eight hours after taking the abx--that is, once I got through the period where I could make no distinction, the period when my IP was nearly intolerable all the time. So about last year around this time, about two years into the MP, I was able to notice that I got my worst IP early... even though it had always been evident that I was one of the people for whom taking abx less often was better. (More frequent dosing was NOT palliative.)
Well, in the last two weeks, I am noticing that I am having my worst IP right before my next abx is due, and I am noticing that olmesartan is palliative for more than neuro IP.
What all this means for the future I do not know... but something is happening.
When I pick up my kidney labs, I'll decided whether to hold steady with 25mg Mino or drop the Mino for a while and go with olmesartan alone; however, if I stick with the Mino, it appears that I'm going to have to switch from my MWF schedule to a q48h schedule, as Sundays may become quite unbearable.
Claire
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42mo on MP; CFS FMS MCS COPD hypermob IBS/GERD osteopor; 125D48 25D<4;
NoIRs during most daylight outings; Ph1.Dec06 * ModPh2.Jun07 * AbxBrk.Mar-May08
* Ph2.Oct-Nov08 * Ph1.Jan09 * Olm.alone.Jun10
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expate
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Posted: Wed Sep 16th, 2009 20:23 |
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Interesting. Just when you think things will just keep going on forEVER like they are, something changes.
I'm developing a nodule on my right wrist, the one that had the worst pain, weakness, and numbness. I haven't had those symptoms for months. My hands have been working very well.
But now, I'm noticing a lump developing on my right wrist that is very similar to the knot of tendinitis I have on my ankle (though this is not as pronounced or hard). It doesn't hurt or anything though, so who knows...
I also had some pretty bad uterine pain this morning (I am officially menopausal -  ). I had/have uterine fibroids and am a little anxious about what might be going on there. I had three procedures to shrink the fibroids (uterine fibroid arterial embolisation), one of which did not work.
Anyhow, I am wondering what will become of all those embospheres that they released into the blood supply of the fibroids to shrink them. I guess they're still in my body, encased in the fibrotic tissue. So, what will happen if the fibrotic tissue starts to "remodel"? Will they become "free agents" and play around in my uterus?
 dette
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Hypervitaminosis D 1,25-D 52 pg/ml, 25-D 38 (4/08), 25-D 34 (8/08), 25-D 29 (10/08), 25-D 14 (3/09), 25-D 15: D3=15, D2<4 (6/09): all ng/ml, started Ph1 7/17/08, Ph2 11/4/08, Ph3 2/18/09. Covered up, but no facemask any longer. NoIRs. Home low light.
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Sallie Q
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| Joined: | Fri Aug 28th, 2009 |
| Location: | Australia |
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Posted: Thu Sep 17th, 2009 03:05 |
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Full of burps, literally frothing at the mouth within an hour of taking alt days meds
really painful from tummy up and if I didn't know better would think I was having a heart attack, lasts for over 1/2 hour , incapacitated up to an hour
Last edited on Thu Sep 17th, 2009 03:18 by Sallie Q
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MP Sept'08 | Sjogrens; b.cancer '90; childhood postviral fatigue (CFS): 25D=7ng/ml@Jly'10
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eClaire
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| Joined: | Mon Sep 25th, 2006 |
| Location: | Virginia USA |
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Posted: Thu Sep 17th, 2009 05:39 |
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dette, Fibroid tumors are weird. I had a huge one that the gyno was following for a couple of years (about 24 years ago); finally, he became worried and wanted to do an ultrasound, which we did a couple of weeks after the last visit. During the ultrasound, nothing was there. After all that time, it was gone almost instantaneously. He was beside himself; he had seen nothing like it.
Hope this resolves for you.
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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Lee
Member
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Posted: Thu Sep 17th, 2009 14:37 |
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Odette, I get bumps and lumps alot! Guess it is part of the th1/sarc-thing. I do note though this ONLY when I accidently ingest VitD. They are now hiding it almost all margarines and alot of other products!!  Exposure to sunlight does not do this now.  I am very good about avoiding the sun but living alone with three pups I do get it whether I like it or not  It is a shame I had to lose my uterus in 1990 before we knew so much!! Lee
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2003 SARC w/COPD
D ratio-2.13 Ph1-2/05 Benicar| 4/05 PH2| 06 Ph3| D25=5.4 2007-TSH-0.09 probiotics/silymarin/sunlight w/noirs
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Juanita
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Posted: Sun Sep 20th, 2009 21:08 |
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Oh, Sally! Isn't that an upsetting IP??? I've had that several times since this last Jan. Fortunately, I live with a paramedic, so I just ask him to check me out. Why must it always come with a paranoia and worry IP?????
In the old days of marriage, prior to the MP, we'd argue about "things". Now I argue that I'm actually dying of a heart attack and he's just letting me so he can have the insurance.
Thank God, that man has a sense of humour. Whew!
If you keep your Maalox in the fridge, though it doesn't help for long... that first hit of aaaaaaaaaaahhhhhhhh of the cold and the medicine is very nice.
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MCS, CFS, FM, CS, DH, stroke neuro, seizures, skin ca, IBS, eczema, irregular heartbeat| NoIR avoid light and D/ On MP 27 months
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Juanita
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Posted: Sun Sep 20th, 2009 21:20 |
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That's an interesting, if terrifying thought, Odette. You have real talent when it comes to finding interesting things to ponder. I rather like that about you, eh?
I read somewhere that Trevor says tumours will come and go as we do the treatment and so not to freak out about it. Easier said than done some days.
I had one on my right wrist. Named it Beatrice and chased the girls around the house saying Beatrice wants a kiss. They were not happy with me. It hasn't come back since it left..... uh...... six months into the MP? I hope yours behaves as nicely too.
I am so sorry you've become officially menopausal. You're quite young for that, eh? My worry is that I'll never reach menopause (I know.... silly worry, but just try stop me) as I'm still dropping eggs each month. I'm 49! Thank heavens Martin is fixed.
I'm wondering if...... oh, dear, the construction of this sentence just left me...... the idea of embospheres floating around with the potential to create more trouble, that's not a fun idea to ponder, is it? You have my sympathies. But if the treatment deals with scar tissue and tumours, wouldn't it also cope with your embospheres?
As in, as long as you are on treatment, you will be okay in time? I hope someone knowledgeable comes along to set your mind to rest.
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MCS, CFS, FM, CS, DH, stroke neuro, seizures, skin ca, IBS, eczema, irregular heartbeat| NoIR avoid light and D/ On MP 27 months
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eClaire
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Posted: Thu Oct 8th, 2009 19:22 |
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Deb G. and I were talking about having a thread entitled "Weird IP" not necessarily unexpected but stuff we find to be weird and want to grump about... like a Grump Stump for oddity.
However, I think this thread is open to that.
Here's one thing we both find weird even if it is neuro and other people have it:
* Having a tongue that has a mind of its own. I swear my tongue resents the fact (okay, I'm exaggerating here) that I am trying to train it to the roof of my mouth rather than allow it to constantly caress my front teeth... Like I want to do braces after the MP. For me, the tongue issue was non-stop for a long time and still comes up for at least 24 hours after taking abx.
Other oddities:
* When the bone on the sides of my hands hurt, the bone on the side of my feet hurt.
* A few weeks back I also had an IP that almost caused me not to be able to sleep: the middle joint in my pinky fingers and the middle joint in pinky toes were hurting like the devil. Very little other pain, but really, I was tempted to ask for a pinky-ectomy.
Claire
Last edited on Thu Oct 8th, 2009 19:23 by eClaire
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42mo on MP; CFS FMS MCS COPD hypermob IBS/GERD osteopor; 125D48 25D<4;
NoIRs during most daylight outings; Ph1.Dec06 * ModPh2.Jun07 * AbxBrk.Mar-May08
* Ph2.Oct-Nov08 * Ph1.Jan09 * Olm.alone.Jun10
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JanEE
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Posted: Thu Oct 8th, 2009 21:01 |
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Okay, as long as you're posting about strange IP I'm posting mine. I already reported it in my last update, but here goes again.
I had this symptom once before and kind of ignored it, after noticing that it was odd. Then, I read in Aussie Barb's thread that she had experienced it too, and I felt validated. It then disappeared, to return recently for a couple days. This time though there was something new added. The sensation was in the upper abdomen of a baby kicking. Only this time, after the first kick, I looked down and actually saw my abdomen jump several times---as when observing the baby kicking. I know the sensation, as I had it when pregnant years ago. I'd blame gas, but even gas has never kicked me.
Jan
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CFS, FM hypothyroid 125D69 Ph1 5/05 Armoir thyroid promethazine mag B12 for low blood levels NoIRs limited outings covered Ph2 9/06 Ph3 8/07 25D11
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eClaire
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Posted: Thu Oct 8th, 2009 23:46 |
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Well, I've had that symptom too Jan and I can think of one of two sources based on knowledge (stuff I've read and so do your own research) and my experience.
First my experience (because the "I think it is" knowledge based is less pleasant)...
Once when I went to see an orthopedic doctor and a stimulator was put on my back, first one side and then the other. On the side where I had no feeling and asked the technician if he had turned off the device (NO), that area jumped out at me, like it had before. Why I don't know. Was it sort of like back muscles connected to nerves in the backbone and nerves in the backbone connected to that jumping bean sensation in the front that I can see.... I've never tried to look this up in anatomy diagrams to see if there is a reason for it happening.
The other, less pleasant possibility (the only other possibility that I know, though there could be others), is that the aorta runs through there. It is a place where people can develop an aneurysm. One sign is pulsating along the aorta. Not good. Not good at all. And so if you don't know what it is, I advise your having it checked out.
As for me, I'm assuming mine, when it happens, is still connected to my spine. If not? C'est la vie. I win some. I lose some. I die someday. Why not today?
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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JanEE
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Posted: Fri Oct 9th, 2009 00:30 |
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I did mention this symptom to my doctor and she just thought it was funny, but didn't seem concerned.
Jan
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CFS, FM hypothyroid 125D69 Ph1 5/05 Armoir thyroid promethazine mag B12 for low blood levels NoIRs limited outings covered Ph2 9/06 Ph3 8/07 25D11
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eClaire
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Posted: Fri Oct 9th, 2009 00:33 |
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Well, you asked. Did you show and tell (as the thumping may not be where the aorta is)? Having been sick and discounted, sometimes it is difficult to know if something ought not be a concern or if the doctor is, well, discounting what we say. If you feel good about her response and have no concerns, you go from there, eh?
Hugs, Claire
Last edited on Fri Oct 9th, 2009 00:33 by eClaire
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42mo on MP; CFS FMS MCS COPD hypermob IBS/GERD osteopor; 125D48 25D<4;
NoIRs during most daylight outings; Ph1.Dec06 * ModPh2.Jun07 * AbxBrk.Mar-May08
* Ph2.Oct-Nov08 * Ph1.Jan09 * Olm.alone.Jun10
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JanEE
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Posted: Fri Oct 9th, 2009 00:46 |
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Ah, yes. I am so familiar with the discounting, but my present doctor has never done that. There have been many others that I never went back to, that were the worst. In fact, I have told her that to me she is one of the three best, and most considerate doctors that I've ever been to---and most of us have seen quite a few.
Oh, and by the way, the kicking symptom was over on the left side, just under my left breast.
Jan
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CFS, FM hypothyroid 125D69 Ph1 5/05 Armoir thyroid promethazine mag B12 for low blood levels NoIRs limited outings covered Ph2 9/06 Ph3 8/07 25D11
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Lee
Member
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Posted: Fri Oct 9th, 2009 00:46 |
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| I have the baby moving IP myself and it is rather nice .... I never thought about the "aorta angle" but this IP is rare for me. Another IP I get that is not so pleasant and one that I get more often, is a sudden jerking of any limb, very similiar to the knee jerk reflex .... It is a solidary quick movement. It can be embarrassing too .... Anyone else have it? Lee
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2003 SARC w/COPD
D ratio-2.13 Ph1-2/05 Benicar| 4/05 PH2| 06 Ph3| D25=5.4 2007-TSH-0.09 probiotics/silymarin/sunlight w/noirs
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eClaire
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Posted: Fri Oct 9th, 2009 02:05 |
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Mine has been in the same place (or so it sounds like) as yours Jan.
FYI on search for "aortic aneurysm pulsing" on Google:
http://www.doctorslounge.com/cardiology/forums/backup/topic-16596.html
http://www.merck.com/mmhe/sec03/ch035/ch035b.html
Sounds like we are out of the woods unless we are oddly constructed.
Claire
P.S. And so I am off to see if I can find a nerve connection that reaches around to that area! (Would be nice to know the cause of this particular weirdness.)
As for me, looks like it might be related to the T6-T10 area of nerves--just where the electrical stimulation was placed... I wonder if it could be like a tic? As a tic around the eye can feel like a pulse.
http://www.doctorslounge.com/cardiology/forums/backup/topic-16596.html
Last edited on Fri Oct 9th, 2009 02:16 by eClaire
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42mo on MP; CFS FMS MCS COPD hypermob IBS/GERD osteopor; 125D48 25D<4;
NoIRs during most daylight outings; Ph1.Dec06 * ModPh2.Jun07 * AbxBrk.Mar-May08
* Ph2.Oct-Nov08 * Ph1.Jan09 * Olm.alone.Jun10
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