Dizzysillyak

Pem - post exertional malaise (malaise that comes on post exertion and last 24 + hours) Pwcs - persons with cfs (chronic fatigue syndrome) There can be an overlap between potsies and pwcs. From what I've seen not all potsies have pem or chronic fatigue but some do. And not all pwcs have oi but many do. I don't know which patients would get pem. I'd have to find it again, but I believe dr peckerman said those with significant oi would get pem due to hypoperfusion. Googling cfs pem pacific labs will give you more details. Jsyk .. Pem is sometimes being called pene now as it causes neuro problems in some. If mine is really bad, I turn into gumby for a day .. Lol .. This wasn't a normal pem symptom for me tho. Something nailed me .. Tc .. D Ps. Did you treat for lyme ?

Do you know if you get pem ? I know I do so I should've thought of this at first but didn't. In case you don't know what this is, this causes extreme muscle weakness including brain fatigue 24 - 48 hours after exerting oneself. Pacific labs is testing pwcs for this. I've only seen oi listed as a cause for pem. I think dr peckerman said it. I had a very stressful experience sunday too so my body was probably recooping from that. I found a lost little girl, 5 yrs old appr, at the beach and returned her to her father. He was a mess as was I. I don't think she had a clue what danger she was in. Either that or I look so much like a nice grandma that she felt ok with me. Lol .. I have adrenal fatigue so i was upset for hours afterwards. She was 5 - 10 minutes away easily. And well beyond anyone's eyesight. A nightmare for any parent. So the stress may have nailed me. Tc .. D

Creon is making a huge impact on my digestion. But so did digest gold when I started it. And when that stopped working I used candidase and virastop. But then they started causing throat pain in my thyroid area. I'm hoping this continues to work this good. I'm thinking because we have hyperinsulinemia, creon may help you to. It's a pancreatic enzyme. I'm rethinking the flax angle too. Maybe creon is helping me break it up now and that's causing the flushes.

I wanted to add that I am having a tough day too tho. I'm feeling a huge rush of blood in my upper body when I lay down and I need to lay down every 15 - 30 minutes. I probably have pem (post exertional malaise) and I'm always weaker then. I just haven't gotten totally winded like that in a very long time... tx .. D

I was thinking that maybe I was just worn out by then too. I'd opened 5 windows by the time I got to that one. My arms weren't over my head this time but I know what you mean by how that affects us. I stay somewhat fit because I have to do everything myself and I'm a tough old broad .. Lol .. I don't have a life tho because I spend my energy on the basics while having to lay down every time I turn around. It could be worse tho. I feel for those who can't get up to do the basics even. Jello is a good way to describe what it feels like. I just wish we knew why it happens. Tc .. D

Hi sue, That's fantastic that you were feeling better. Do you think what happened is possibly a combo of the changes you made ? Fwiw .. I'm post menopausal for about 18 months now and I've eaten flax almost every day since 2006. I just started having hot flushes again two weeks ago after starting creon because I'm low on elastase. I figured i just needed to digest my food better and now I'm detoxing. Well I sure hope this stops. Btw, have you been tested for digestive enzymes ? I have hyperinsulinemia too and on my last gtt my glucose only went to 140 range. Well that's what the lab results were anyways. If it went higher, it wasn't caught. It went to 180 the time before this. So I'm not sure a glucose high would be necessary. Just an over zealous pancreas. Or maybe we just react badly to whatever is in the glucose syrup they give us. Hope you figure this out. You've got me worried about menstruating now .. Lol .. Tc .. D

So I just got extreme SOB from lifting a stuck window that I lift on most days. It was so bad that I had to lay down and breath through my mouth for about 10 minutes. My brain was fried too so there's really no choice but to lay down and wait for this to end. I'll probably be down for about 30 minutes with this as my body re-cooperates. This is my reaction to aerobic exercise too. I'm self sufficient but weak too so I have muscles normally ... if that makes any sense. For example on most days I can lift my laundry baskets and take them to the laundry mat without having a problem but every once in a while, this makes me winded too. Anyone else ? And does anyone know of a reason this would vary so much ? Isn't muscle strength supposed to be constant ? tc ... d

Hi Jen, You really seem to be struggling with this. Realistically, what do you have to lose by seeing this doctor ? You're going to have control over what he does right ? I mean if he's only going to try light stimulation on you, is there any possible harm ? I'm not up on this but I'm sure others are. FWIW tho .. I had it done for years and it was totally useless and harmless. But I had ataxia and other nuero problems from gluten. There wasn't anything that was going to counteract that ... Your situation may be difficult for traditional doctors to deal with but not holistic. Just look at how many people here have gone to the specialized clinics and been disappointed with the outcome. These doctors appear to be stumped if they can't prescribe a med ... I stumped at least 6 neurologists, Mayo included, with my neuro problems and they were all from gluten ... duh !!! I'm just started learning this myself when I was 50. That was almost 7 years ago. I'll never know what allowing my body to be totally disabled and unable to walk did to me for 16 1/2 years. But I'm sure it's not helping me now ... I only trusted traditional doctors until I learned how food or other toxins could be causing so many of my symptoms. NOW I only go to a traditional doctor if my integrative (both MD and holistic) refers me to one. And believe it or not, my traditional doctors want to know what my integrative doctor thinks too. FWIW .. I agree he sounds a little wacky. I doubt he can cure you within a month either. BUT, you'll never know unless you see him. I'd at the very least arange an in person consult with him and your hubby to see what he has to say. hth ... d ps. I get what he means when he says healthy or not. Our bodies react to toxins based on genetics, nutritional deficiencies, pathogens, etc .. HOW each person reacts (what we call a diagnsosis) is independent of the CAUSE ... It's the CAUSE that he's going for ...

Since he's into nutrition, I would try it. FREE is nice too tho. Jmho, if he doesn't recommend that you eliminate all common food intolerances like gluten, dairy, corn, soy, egg and all chemicals I'd try a different chiro. I'm actually hoping he recommends the paleo diet since it reduces cytokines. Gluten free is the minimum tho .. I had gentle chiro treatments for years after coming down with disabling cfs but they didn't help. I couldn't walk without my legs feeling heavy and falling into things. And all my muscles were in spasm. Changing my diet stopped this. My insurance paid that chiro enough to buy a porsche or two. Lol .. Btw, that's great that you have such a wonderful support system. Hugs .. D

Thanks for offering to pm me the list but I'm really broke right now. My integrative doc opted out of medicare and trying to deal with that. I'm leaning towards sticking with diet mostly anyways. Esp since I can afford to do this .. I have a freind who gave me some valuable guidance on my diet in march and he suggested I stick with mostly raw foods and juicing. The wahls diet pretty much except more raw veggies and very little meat. So far other than eating too many cruciferous veggies by mistake, it's going well. Rookie mistake. Tc .. D

Me too now that I'm taking it again. What ala do you take ? My doc has a long list of supplements she'd like for me to be on but I just can't afford these and healthy foods. In an odd way knowing I have so many possible causes of my io makes me feel less frustrated. I'd never seen Them summed up like this. Fwiw. I've seen most of these related to gluten .. 1 - My left bundle branch block didn't change at all after I started walking normally in sept 2006. My cardiologist says it's still the same as of march last year even. It's considered minor but causes a bad ekg. I read up On this and learned it was a ticker problem. And that purkinje cells were involved. And since purkinje cell damage is implicated in gluten ataxia, I thought my lbb might resolve itself too. Bummer .. 2 - I have chronic dehydration via last years frequent urine tests. 4 - Diagnosed with adrenal fatigue via saliva test. My doc may have run something I'm unaware of too tho. Diagnosed with hashimoto's via thyroid antibody test ..

Hi Kayla, FWIW .. Have they tried feeding you foods that aren't known to cause reactions in most people ? Things like plain baked potatoes, rice, plain peas, green beans, asparagus, peeled apples and pears, plain applesauce ... No gluten, dairy, soy, eggs, corn, caffeine or chemicals ... Avoid hospital soups like they were poison ... lol .. I would think that if you asked for some of these foods and ate them, they'd see that you weren't doing this on purpose. Of course, you may still throw this up but at least you're showing an interest in food. Be sure not to pig out tho. Not at first .. Sadly, we parents get confused when our kids are sick and if the medical community wants to blame the child, we might too. I feel so bad for you and your parents. l hate to admit it but I didn't believe my DD when she first had anaphylaxis. I still feel guilty over that one ... lol ... IMHO, I'd avoid any kind of treatment that didn't include a simple diet change first ... tc ... d

Hi Issie Thanks for reminding me about thiamine. I bought the active type and keep forgetting to take it. I took ALA for about a year but didn't notice anything from it but I'll try it again .. fwiw tho .. I have almost all of the problems this doctor listed in this section detailed above. I put it in red in the first post too so it would be easier to pick out ... rats ... d .. Syndromes with orthostatic hypotension that may be diagnosed include BUT ... on the upside, most of my problems have been related to gluten so there's a teeny tiny chance this one is too and I've just been getting too much gluten still. I've had high gluten antibodies in my stool until my last test in March. But even then it was low. I can't really remember right now but I "think" I ate something questionable ..

I wonder what role age and general health have in deciding who gets this surgery. Would it be worthwhile for an older patient ? I'm 56 with multiple autoimmune disorders. Sue, I don't have pelvic congestion syndrome.

Can anyone think of a non surgical way to address this since laying down takes the pressure off ? Yoga ? Certain exercises ? Upside down traction ? I'm not so sure it's not worth risking losing a kidney .. My life is on hold.

I'm guilty of thinking that I'm just talking to my freinds on dinet when I post here. I like feeling that way because it's so reassuring. I was all alone with my illness for 15 1/2 years before finding the web. My family was and is there but they don't understand 1\10 of what I'm saying. I really don't like the feeling I get thinking about those who don't understand OI reading what I'm saying. I see why so many people stick to private messaging or emailing now. The downside to keeping this private is all the great info we would be missing out on from those we didn't talk to privately. Bummer ..

good to hear .. hopefully they have a nausea med on the way for you. They gave me one when I had a kidney stone and it worked like a charm. That's if you can have it ... fwiw .. room temperature water with a squeeze of lemon helped me get through the nausea I had with h pylori ... be sure to sip it ... I would think that they can definitely do that for you ... oh ask for an ensure or boost too if you can have those .. tc ... d

This doctor really has some interesting info here. I like the way he lays it out for us too ... granted, I dont' understand it all but I thought you might ... tc. d http://www.dizziness-and-balance.com/disorders/autoimmune/aibd.html

I've had trace amounts of blood in my urine almost constantly since 1990 when I became ill with ME/CFS/OI. This gives ways of finding this out ... Notice the date ... http://www.ncbi.nlm....pubmed/10074588

go for it ... i'm going to ask my doc for this too.

Surgery worked for this too ... *** ? http://www.ncbi.nlm....pubmed/19193424 What's with all the cutesy names here too. Grinch and now this ? I guess it's ok for me to call them bozos then ... lol ...

I found supplements that help me sleep a few years ago so I'm good there. BUT I'm still getting too tired / weak when I'm upright. I feel energized just from laying down for an hour so Imho, it seems my body doesn't deal well with hypoperfusion.

WOW .. I've never had this test. Is it the norm for OI ? Any chance of getting a bodywide standing ultrasound ?

I just saw FACEBOOK on the other board. All this tracking is getting too creepy for me ...

thanks ... I had to google this so here it is .. http://en.wikipedia....wiki/Renal_vein how do we get evaluated for things like this ?