Dizzysillyak

LOL ... laugh out loud ... Don't feel bad ... These throw me too ... HFS is health food store ... I don't feel fluish anymore ever ... KOW (knock on wood)... When I have PEM, I just have no ambition for anything other than laying on the sofa and zoning out in front of the tv. I usually take a few naps on those days too. Otherwise, on my good days, I'm cooking or cleaning or running errands ... I usually plan my errands for 3 - 4 days apart that way I know I'll be up for it .. I can push myself when I'm tired or have PEM though as long as I lay down flat every few hours now .. but I don't feel good while doing this. I feel jittery and have a tough time thinking.

Earth Mother, From what I remember we have food intolerances in common too ... hmmm ... PEM = post exertional malaise ... it's a term used to describe the fatigue a person with CFS gets after activity. It generally lasts for a few days but for some it's longer. This can happen immediately but usually within 24 - 36 hours afterwards. My PEM always come on about 28 hours afterwards and it lasts for 2 - 3 days. And I get it from running errands or doing housework so my activities are limited. I didn't know what this was until I stopped feeling like crap all the time and started feeling healthy at rest most of the time. A freind of mine has an explaination for this that she derived from reading articles by Dr. Cheney and Dr. Pall ... it has to with our body's detox cylce not working while we are active. I'll look for it .. but it's something about superoxide turning into peryoxide when we are manufacturing and using our ATPs. I'm heading to the grocery store and HFS now ...

Ernie, yes, we have tried that also. The problem being that when she tries to do any kind of stretching excercies she ends up in more pain. The other day for example, she was lying in bed and moving her shoulders back and forth and her whole back went numb. The other day she moved her neck a certain way and now she has constant pain in the back of her neck and shoots up to the top of her head. IN fact im trying to get her someplace today where they can take an xray. It seems everything she does to try to help somewhere turns into more discomfort and pain. And she used to be a horseback rider, and was in competiiton. Horseback riding takes a lot o f strength and endurance and now she can't even hardly get out of bed. It seems to go on and on with no relief in sight. Im sure everyone here has all of this to deal with, I just don't know how much more of this she can take. Im waiting on the insurance co to reverse their denial to allow her to be admitted into the hospital for therapy. I guess I just have to wait and see what happens. Im sure ill be fighting another battle! I used to do this too ... I went from doing aerobics 3 times a week to being like this ... Please check out the thread I started on testing for fatigue in CFS .. Also, have you had her nutrient levels tested ? I'd have her tested for celiac disease too. My DD is 21 now but had some rough times (positive ANA, anaphylaxis) in her teens, so I can relate to what you're going through. I'm sure she appreciates your efforts.

http://aboutmecfs.org/News/PRJan09Pacific.aspx I can't remember where I first heard of this test but I didn't see it here today. Sorry if it's been mentioned already though ... FWIW. I failed this test the first time I tried it back in 1992. All of my muscles went into spasm within 30 seconds of starting the test and I was completely wiinded. I haven't had this test since then, but recently while riding a recumbent bike in PT for OI, I noticed that if I tried to peddle at a "normal" rate I got stabbing pains in my muscles and I got fuzzy headed within 2 minutes. HOWEVER, if I peddled very slowly, I lasted for 7 - 10 minutes. I'm not sure how long I could've lasted at a slow pace though since my PT always stopped me at 10 minutes. Have any of you had this test ? Can you relate to the "slow is better" technique for excercising ? My PT told me I did this because that was how long it took my blood to get the nutrients back into my muscles.

Desperate Mom, Sorry to hear this ... have you looked at her diet yet ? I have CFS/ME/FM and OI and have been helped considerably by eliminating gluten, dairy, soy, etc. (See my signature). I was diagnosed with celiac disease but you don't have to have celiac disease to be intolerant of gluten. The best way to start reviewing one's diet is to be tested for food allergies and intolerances but since she's vomitting and testing takes time and it's not always accurate, I'd suggest she just give up those foods and stick to plain organic baked meats, veggies like peas and asparagus and fruits like pears and apples and bottled water. If her regular doctor isn't up on this than an integrative or naturopathic doctor can help you with this ... HTH .. Marcia

I'm one of those who is so sensitive to meds or supplements that I have to start out with minute amounts of everything so I'm trying it on my food first. I was thinking that because I'm so sensitive this may be all I need. I'll let you know if I feel more energetic, but right now I'm recovering from going out of town, getting glutenned every day and then catching a nasty cold / congestion. I have to give my body at least 1 more week to get over this but I'll be watching anyways. If this small amount doesn't work and I don't get sick from it (or start to look like a canary), I'll move on to the capsules too though ...

When I saw this here I started trying this too ... I made a curry salmon / asparagus and just added it in .. yum .. in case you want the recipe, it's just salmon, onions, garlic, green bell pepper, fresh asparagus, red curry, coconut milk, tumeric, s and p, EVOO ... just cook your veggies in EVOO, then add the spices and salmon and cook for about 5 more minutes. I used pre cooked salmon since I had it on hand. I had to laugh when I saw this about yellow finger nails. I use cloves in an herbal tea mix I take daily and am constantly fighting to keep my teeth white. Add yellow nails to this and I'll never get a date ... I'm eager to see how we all do on this ...

IMHO, regardless of why you're taking sodium, you have to be careful not to overdo it. I got horrible headaches when I started salt loading and I was going about it slowly .. and my BP was up way too high several days in a row too .. IMHO, it's not something to play around with .. I'm only at 2500 - 3000 a day msyelf and I've been at it since May 2008. I can't imagine taking 3 -4 times this much ... You should probably google this and see for yourself ... Don't be afraid to call your doc and ask again .. and be prepared to tell him which website to look at ... the USDA probably has one he'll appreciate but from what I read, they all say basically the same thing ... I've never seen worms in my salt. EW ... Gross ... Now I'm going to be watching for it ..

Sorry if this is annoying you but I'm only trying to help here. Again, I am diagnosed with CFS which includes OI. I'm NOT self diagnosed ... No one told me until I'd recovered from gluten ataxia that I had gluten ataxia all those years. Most doctors don't know enough about gluten ataxia to know to look for it. IMHO, It would be crime for me to tell someone that all their balance problems were from OI and not tell them about gluten ataxia. BTW. I've seen some of the best docs in the US. I'm not self diagnosed. Although, I did use the internet to diagnose myself with gluten ataxia, none of the highly qualified doctors that I told about walking normally again questioned my description of how gluten ataxia affected me. I see we diagree on using the internet for medical info. But you know ... even my docs are looking at the articles I've brought them including the one from John Hopkins ... as long as you only use reputable sites, I think it's self defeating not to use the web ... Hope you do well with what ever route you chose though ...

I have a 21 year old who about killed me (and herself) while trying to prove she wasn't allergic to peanuts when she was 16. I'd love it if she would agree to go on the elimination diet. She's got a lot of medical issues. I've never heard of taking a biopsy to determine food allergies. Seems extreme ... It's good to hear he's doing well. Let's hope the two of them can continue this. I'm thinking their health will hold out until their immune systems take a big hit of some sort. My DD has a high ANA and gets really sick when she gets sick but still won't listen to me ... I keep trying though ..

Ok, I'm obviously not doing a good job of expaining this ... I'm not a writer .. or a doctor ... What I've been trying to say is that you shouldn't just take for granted that any symptom that is considered "normal" for OI is automatically just OI. Or that any symptom considered 'normal" for CFS is just CFS ... Many of us have co-existing conditions ... and these may be treatable ... I'm betting OI is too I just haven't gotten it figured out YET . Fuzzy vision can be from a lot of things ... just google fuzzy vision and I'm sure you'll find a lot of causes. Hypoglycemia is one I deal with from time to time now but it was a much bigger problem before going on the Paleo diet and getting my BG levels stabilized a bit. This goes for balance problems, heavy arms, yada yada ... IE ... I was in several car accidents prior to gettig sick with CFS and have been told I have permanent damage from these .. I know this contributes to my heavy arms at times. What is unique about my experience is that I have OI and used to have gluten ataxia so I know how different they feel. Not that everyone with gluten ataxia is going to have my exact symptoms but according to Dr. Hadjivassilou, most of his patients with gluten ataxia have balance issues, heavy arms and visual disturbances. I have a link to this article, but I'm busy nowadays trying to get ready for company ... if you google gluten ataxia Hadjivassilou though you should find it .. Ok, does this explain it better ? You may just have to start googling to see what I'm trying to say. That's what I had to do in order to finally get it ... I'm as thick headed as they come .. PS. Here's a book I just started reading "Healing the New Childhood Epidemics Autism, ADHD, Asthma, and allergies" . It's by a DAN doctor and I'm hoping it pulls together all the research / studies I've witnessed on the web in the last 3 1/2 years. I ran into several DAN members when researching using diet to cure hypoglycemia and kidney stones (oxalate problems). Most of them had noticed some benefit on the GFCF diet and were ready to try something new. I have the utmost respect for these parents and kids ... http://www.amazon.com/Healing-New-Ch...pr_product_top

Mack's Mom, I don't see a doc at John Hopkins. I just like their literature on OI. Has your son's doctor told you how to go on the elimination diet ? Has he tested your son for the common food intolerances including gluten, dairy, soy, corn and eggs ? I'd go with the stool tests at this point since they appear to be more reliable. Diagnos-Techs, Genova or Enterolab seem reliable. My doc is using Genova now ... BEWARE - There are times when these tests aren't as good as the elimination diet and there are times when the elimination isn't as good as these tests ... I tested negative for dairy, but the racoon eyes I get after eating dairy tell a different story. And I test positive for eggs, but really never noticed any problems from them ... At any rate, I'm off gluten, dairy and eggs ... I eat a tiny bit of soy and am playing with corn every once in awhile. hope your son feels better soon ...

I believe your doctor made a mistake here. If you google sodium deficiency, you'll see that we need between 2500 - 3000 mg a day. My doc messed this up too. He told me to eat a bag of potato chips a day ... And I was all ready to follow his instructions when it dawned on me that potato chips don't have nearly enough sodium ... Also, you need to go slow when salt loading. It gave me headaches and caused a spike in my BP if I had too much at first .. those symptoms lasted at least a month and aren't a problem now .. Oh and it's best to use natural salts like Redmond's real salt, celtic salt and Himalayan. Sounds extreme, I know, but these have minerals in them that our bodies need ... I just add 1/4 tsp to my water 3 - 4 times a day and get the rest from my food. You get used to the flavor and actually begin to crave it ... HTH .. Marcia

Hi there ... It's good to see that you're looking into gluten sensitivity. I was blown away back in Aug / Sept 2005 when I started reading all of this. My doc gave me info on the LEAP food elimination diet in July 2005 because I was still soooo sick after seeing a GI and going through all those invasive tests and taking those meds. Then I dropped 10lbs in one month from "D'. I was 108 lbs, gaunt, and looking grey by then and there was no end in site ... Within days I stopped feeling jittery and sleeping at the drop of a hat. So when I found out about gluten, I wasn't all that surprised when I read that gluten could be causing other nuero problems. What shocked me and left me in denial for a couple of years was that I hadn't been told about this from my doctors. Let me clarify this ... I went on the elimination diet for 9 months back in 1990 - 92 with the help of a chiro who used a machine to tell me what I could or couldn't eat but it didn't make a bit of difference. I don't recollect him ever telling me about gluten though so I was no doubt eating it ... Then I vaguely remember another doctor of mine suggesting I go on the elimination diet, but I don't think I took him seriously either. Afterall, I'd tried it and it didn't help ... and it's not like he really explained it. Not like the doc who put me on the elimination diet in 2005. She spent at least 30 minutes telling me how to do it .. what to eat, what not to eat, digestive enzymes, etc etc etc ... The problem I see looking back though is that 1 - we didn't have the internet and 2 - not that much was known about gluten. It wasn't until 2002 that Dr. Hadjivassilou proved that gluten ataxia existed ... now we have tons of info on gluten, etc so it's much easier to take advantage of this. Gotta run ... HTH .. BTW, I'm not self diagnosed but I have no problem with those who are. I actually admire them for taking charge of their health and not getting sucked up in what we call Health care in this country ... I wasn't this way until this past year though ... live and learn ... Marcia I almost forgot ... I can't find the website now that said a positive rhomberg = ataxia ... It was there in 2006 though .. But ... If you're constantly bumping into people who are walking next to you and you're legs feel like they weigh a ton .... and you have to bring your arms down to rest when washing your hair ... and your vision gets fuzzy when you're walking ... suspect gluten ataxia ...

There's gluten ataxia and then there's celiac ataxia. I'm not sure if both of them are from gluten antibodies in the brain though. Those who are diagnosed with gluten ataxia don't have celiac disease though. Dr. Hadjivassilou first proved that gluten was damaging the Purkinje cells in the brain in 2002 ... I know I had gluten ataxia based on the fact that I failed the Rhomberg back in 1990 - 92 when I first got sick and the fact that after eliminating gluten for one year, I no longer fail it. I can spin in circles with my eyes closed if I want to ... The Rhomberg test is specific for ataxia. I wouldn't suggest trying this alone .. I would've bit the dust without realizing it prior to Sept 2006. If you have ataxia you don't realize that you're off balance until it's too late. I used to bump into anyone walking next to me ... and didn't realize it until I almost knocked them over ... In case you're interested though ... you can google Rhomberg or I think all you have to do is stand up with your feet a little apart. Put your arms out in front of you and close your eyes. Seriously, don't do this if you think you have ataxia and you're alone ... if you have ataxia, you'll fall without realizing it .. I didn't just sway and catch myself, I fell ... The test for OI is a drop in BP after standing for 2 minutes or longer which mine does and continues to drop the longer I'm up. My BP was low much of the time from 1990 - 2008 when I finally figured out how helpful salt was. I'm not up on the different types of OI but I'm not sure that matters since all I want to do is fix it. You can be gluten intolerant and not have celiac disease. I think I'm a good example of that but since my doctors never tested me for celiac disease I'll never know for sure. But get this ... I had gluten ataxia from 1990 - 2006 and only got the severe D they talk about in 2005 when my digestive tract just finally stopped working. My guess is that I didn't get celiac disease until 2005. If this isn't what happened, then everything they say about celiacs not being able to eat gluten is wrong, because I ate it every day, 3 times a day, from 1990 - 2005 ... My case really doesn't matter though .. Dr. Hadjivassilou proved in 2002 that anyone who has ataxia could have gluten antibodies in their brains and not have celiac. There's been a lot of research on how gluten can affect us since then .. And these are real doctors proving this ... Here's an article from the NIH (National Institute of Health) on leaky gut. I'm sure there's more like this but this one was handy.

I was diagnosed with gastroparesis in 2004-5 via the stomach emptying test and while too much meat can still be a challenge, it's mostly gone as are my other digestive problems. I was also diagnosed with GERD, hiatal hernia, colon polyps, diverticuli and possible Barretts esophagus the year before finding out I was gluten, etc intolerant. From what I've seen it's normal for celiacs to have other digestive issues. IMHO, GIs like to look at the organs along the digestive tract as if they were completely separate entities, but it's really just one long tube and what happens along that tube can affect the rest of it. So, if you have a problem with digesting certain foods it can affect the whole digestive tract. You may want to try some probiotics too. These help quite a few people ...

This sounds so familiar. Have you heard of the elimination diet ? Basically you eliminate all common food intolerances (gluten, dairy, soy, corn, eggs, shellfish, etc) + all spices and anything you know hurts ... from your diet. I'd go with plain baked chicken, baked potatoes with EVOO and salt, white rice, peas, asparagus, pears and apples ... if that doesn't help you within a few days, then I check with your doctor ... actually even if it does help, I'd contact your doctor for food intolerance testing. hope you feel better soon ...

CFS didn't used to include Fibro pain but I see a lot of doctors including it now. It's really not the same though. You can have one without the other. I hardly ever have pain anymore and when I do it's always the result of overusing a set of muscles. I don't have most of the CFS symptoms now either unless I eat gluten. KOW ... It was my experience that most of my balance, cognitive and visual problems were from gluten ataxia, BUT that doesn't mean it will be that for everyone. I know of people who get seizures from dairy but that research isn't as easy to find as the research on gluten. I suspect that there are plenty of toxins that are causing these kinds of problems including MSG, aspartame, etc. I just haven't researched these because I gave them all up just in case. You mentioned that yeast will bring on your AS. I have a good friend who has RA and was just diagnosed as a celiac. It's getting more and more difficult to ignore the relationship between foods and disease. IMHO, we're lucky to have the internet to do our own research ... Many in the medical community has been slow to adopt the idea that gluten can cause multiple problems even though their is strong research to support it. Pubmed (a division of the NIH) has a ton of articles on this ... check out www.theglutenfile.com Leaky gut is called gut permeabily by traditional doctors and if you google it you'll see the same type of info that the naturopaths are saying. The problem is that traditional doctors, including gastroenterologists, aren't dealing with this. And I'm sure it's because it's dietary intervention and there's no money in it. On top of this, most gastroenterologists aren't running vitamin and mineral deficiency tests on their celiac patients and celiacs have to be deficient in most vitamins and minerals since that's what the villi do for us. I didn't get this or even an osteoporosis test ... which I heard was the norm. I'm not up on TNF ... but it sounds exactly like the definition I got back in 1992 about how our immune system is up regulated ... meaning it's stuck in an infinite loop and unable to stop fighting anything it gets ahold of ... This results in elevated viral titers and I'm guessing severe allergies. I have both .. If our immune systems are in our guts then it seems to me that the way to fix this is to fix our guts. I'm not sure this is do-able, but since this is a problem for a lot of autistic kids too, their test result would tell us. I'm a newbie to all this research but there are books on the DAN protocal that can explain this. This one was highly recommeded as well as the books by Jenny Mc Carthy. http://www.amazon.com/gp/reader/0345494504..._pt#reader-link good discussion ... Marcia

The morning problem could be from hypoglycemia. I find somedays I'm ok to shower before eating breakfast but most days I'm not ... Prior to going on the Paleo diet, I was so weak that I could hardly function in the morning. So there's been some improvement here ... I use a bar stool sometimes when I'm cooking too ...

Here's some info potassium deficiency. HTH ... http://www.natural-health-information-cent.../potassium.html

I was thinking that's it because when you go up stairs, the blood gets cut off to your leg for a second while you're reaching to climb up the next step. This never happens going downstairs or on the treadmill ... Have you noticed that if you go up one stair at a time and rest in between with both legs on the same step, that going up isn't a problem ? This would allow the blood to get back into your legs and provide the nutrients it needs ... Yes, it's slow and anyone behind you hates you but it works ... My PT taught me that if I rode the recubent bike slowly it would give my body a chance to redistribute the blood / aka nutrients and I could ride longer ... BTW. Do you all get winded easily ? And do you have times, as in days or weeks that you're perfectly normal ? I landscaped my back yard about 2 months ago when I had a good month ... I was thinking this could be from the muscles contracting so hard too ...

Well said ... I've read that this overload on our immune system is due to too many cytokines. Here's an article that explains this ... http://www.prohealth.com/library/showartic...&t=CFIDS_FM I believe, based on my own experience, that we can reduce those cytokines by changing our diets to avoid foods we're intolerant too since food intolerances create cytokines and by avoiding all those toxins they insist on putting in our foods. BTW, On leaky gut and candida and how researchers aren't aware of it ... I have no idea why they aren't looking into it further. We all know that our immune systems are mostly in our guts so it only makes sense to me ... Could be that our health care is profit oriented and there's no money in telling someone to eat healthy.

I stopped doing this too but had no idea why ... thanks ... Have you had your chromium level tested ? It's supposed to help with hypoglycemia by improving the way our body utilizes glucose. The Paleo diet helped me stop shaking before eating in the am, but I'm still having to eat every 2 -3 hours ... I tested low and am currently supplementing to see if it helps ...

People with CFS can have OI but they have other symptoms too, like sleep disorders, brain fog, nuerological problems like seizures, IBS, etc. From what I've read and witnessed for myself, a lot of this is just food intolerances and nutritional deficiencies caused by leaky gut and chronic hypoglycemia. Leaky gut appears to cause a lot of problems and is implicated in many chronic illnesses. That's the problem with diagnosing a disease based on grouping symptoms. We need to start looking for the root of the problem not just diagnose by grouping symptoms. From what I've seen, most diagnosises cross over this way. Seriously, the only real advantage I can see of using a "diagnsosis" like CFS is to file insurance. I see people diagnosed with celiac who have a lot of the symptoms of CFS and those with ataxia who have these symptoms too ... but their doctors diagnosed them with one or the other so they stopped looking for answers ... as did I ... Thankfully we have the internet to google our symptoms and do our own research. It's especially discerning to hear people talk about what's "normal" for CFS or "normal" for celiac or "normal" for ataxia, etc ... as if it's the whole answer. Just because the medical community has funded a study saying that 30 out of 50 people have X when they have Y, doesn't make it science. Look at all those kids who ate peanut butter who now have ADHD ... (I better be quiet, I don't want to give them any ideas ... lol ) While orthostatic intolerance, hypoglycemia, IBS, etc is normal for CFS, it's not a reason to accept it ... up till this orthostatic intolerance problem, the other "normal" symptoms I have for CFS have been fixed (mostly) by dietary intervention. I just have to find a way to avoid gluten. It's everywhere ... .. ... and according to John Hopkins, my OI could be dietary too. So many of my symptoms are, that I wouldn't be surprised. BTW. My symptoms are probably due to my leaky gut allowing undigested foods into my body ... The visual problems can be from gluten ataxia or hypoglycemia. Or maybe other food or chemical intolerances too though. I'm just up on the resarch about gluten and hypoglycemia ...

Do you find a saline IV works better than drinking salt water ? I read that some studies showed it worked better but am unclear as to why ...