Dizzysillyak

I used to get sick in the sun, but I don't anymore. I'm not sure whether it was a food intolerance or candida or what that was causing it though. The sun actually feels great now and I usually end up taking a nap.

But, I still have OI and have to lay down every few hours to get the blood circulating again.

Gary,

Interesting discussion. We're going through the same realizations about health care on the CFS/FM and celiac boards. And you can just imagine how the autism community is dealing with all the interesting findings concerning the DAN protocal.

I think the problem lies in recognizing the difference between holistic and traditional medicine. Traditional medicine is interested in what labs or procedures say and in which meds or procedures / surgeries can be done to correct a condition. Most treatments are specifically directed at a symptom and not the cause. And since no cause for a symptom is found, some of these conditions can last a lifetime setting you up to take meds for life. Many times these conditions are part of bigger picture and more symptoms are already present or begin to present themselves later. But again since the root isn't researched, patients end up just getting another diagnosis code added to their medical records.

Holistic practioners look for how the condition came about and how to undo the it. In my research over the last 4 years, I've found that leaky gut / gut permeabilty is thought to be the root cause of many illnesses. We all know that most of our immune system is in our guts. Not that this is the best example, but even the Danactive commercials are talking about leaky gut now ...

Some traditional doctors have become interested in finding the root cause of illnesses to and know about supplements. I see an integrative doctor so I can get meds or supps depending on what she thinks I need.

Even Dr. Oz, cardiologist, said on Oprah the other day how he has to decide which ones of his patients he's certain can recover via diet and excercise and which ones need the surgery. If one's heart damage can be reversed, why not POTS ?

My ataxia is gone and according to all the research I read, ataxia means I had damage to my cerebellum. Dr Hadjivassilou proved that in some cases of ataxia, gluten antibodies had damaged the purkinje cells in the brain causing ataxia. Removing gluten from the diet for a minimum of one year is known to reverse gluten ataxia in many ... We know that some diabetics have gluten antibodies in their pancreas and those will go away once they adhere to a GF diet. These are just two of the illnesses that can be accounted for by gluten antibodies. The list includes 250 other illnesses ... and hopefully once they begin to understand that celiac disease is just the tip of the iceburg as far as gluten damage, we'll see more people being helped sooner. FWIW. I'm sure there are a lot more toxins than gluten causing symptoms but these are well documented by traditional medicine mostly under celiac disease.

So ... IMHO, the root cause of many illnesses can be found, you just have to look for it. Granted some conditions will be permanent depending on the amount of damage. But I had ataxia for 16 1/2 years and it just went away after 1 year on the GF diet ... Makes me eager to see if there's a solution for my OI ..

Sorry to hear you're feeling puny. Ginger root or peppermint tea, Sprite, Ginger Ale and emetrol are good for nausea. To make ginger tea, you cook a small amount of raw ginger in water for 5 minutes and then drain it. A few bites of a salty cracker can help too ..

There are suppositories that are good for nausea too but I think you need a prescription.

Hope you feel better soon ... Marcia

PS. If the diarhea gets too bad, it won't hurt to take Imodium to stop it. I'd start with 1/2 tab and take it from there ... you want to get the virus out of you but not at the risk of getting dehydrated.

This article links omega - 3 to insulin resistance and dehydration ... Most people have some sort of insulin / glucose problem caused by eating too many carbs ...

http://www.brighthub.com/health/diet-nutri...cles/21562.aspx

http://www.bellaonline.com/articles/art20175.asp

I googled digestion water and found this article ... I have to come back to this since I need to lay down NOW ... lol ...

I've been having loose stools for almost 2 months now and finally figured out that if I take a soluble fiber like Konsyl, it stops it immediately.

But the problem is that I'm only taking 1/4 of a tsp and getting seriously constipated from this. The instructions recommend taking the whole pkg ... I figured out the hard way a little goes a loong way with me ...

I was thinking it might have something to do with the chronic dehydration we have. I drink plenty of salt water so I'm good on hydrating.

Where do you think all that water is going if not into my colon ? Or is that bowels ? Intestine maybe ? ... Lack of water in my intestines is the only reason I can think of for an extreme reaction like this ...

Anyone familiar with this ? thanks ...

This is a tough one for me too ...

I'm typically physically active for 1 hour and then resting either laying down or sitting for 1 - 3 hours depending on how I feel ... but I absolutely have to lay down flat 3 times a day right now for an hour each time in order to get blood back into my brain ...

When I was in PT (where 95% of my excercises were done laying on my back and only 5 - 10 minutes slowly pedalling on a recumbent bike) I felt energized after leaving. Honestly, I think it was the laying on my back that did it for me ... I always feel energized after an hour of laying on my back ...

If I don't rest every few hours or I do something really taxing, I'm wiped out for 1 - 3 days afterwards ... this is post exertional malaise for me ...

Clear as mud ?

Spectracell is the name of the lab that ran your tests and they have a website where they explain what their tests mean. You'd have to google it since I can't remember exactly what the website name is .. they have a large selection of labs.

I'm not totally up on CoQ10, but are you taking the one in oil ? They're still learning about CoQ10. Most parkinson's patients are told to take 1200 mg a day. I was told to take 100 mg twice a day and raise it up to 1200 mg a day to see if it helped. I haven't gotten past 200 mg twice a day and I can't say I've noticed an improvement yet, but I've had other issues to deal with ...

Sounds like you have a great doctor though ...

I've been going through this during the day for a few days now too. But, I'm up at night jerking (nocturnal myoclonus) and wide awake for hours on end.

I ate out on Wednesday and I know I got some gluten and I'm super sensitive to it. I haven't figured out yet how to wake up when this is happening. I could drink a cup of coffee and still fall right to sleep during the day ... Melatonin was working at night but isn't this time.

Mine only lasts a few days to a week once I'm no longer ingesting gluten. Forcing myself to get out of the house and run errands helped today too. But, don't drive if your too sleepy ... Been there done that ...

Until you can get your doc to test you, you could always go on the elimination diet. It's gluten, dairy, soy, eggs, corn and chemicals like MGS, aspartame, etc ... This leaves you with fresh meats, fruits and veggies ... I'd start with the ones you know give you a problem ..

The tongue problems are a food allergy. Google oral allergy ... Mine was doing this non stop back in 2005 - 7 but hasn't been a problem in the last year. And I'm eating a wide variety of foods now. Cantaloupe, oranges and walnuts were the worst.

I'm interested in seeing what others have done for this ...

Hope you feel better ... good nite .. lol ..

Looks like CFS/ME/FM to me ... Since you have recognizable digestive issues, I'd start with food allergy / intolerance testing .. I had most of your symptoms too and was amazed when they just stopped happening ... most of the weird head feelings / visual problems took a year to eliminate so it's important to hang in there ... good luck ..

B12 deficiencies, as well as iron are commonly diagnosed in celiacs ... I have the feeling if they thoroughly tested celiacs, they'd find a lot more than just those 2 though ...

Did she test positive for celiac or just go on the gf diet because it made her feel better ? Not that it really matters ... what I was getting at is that she could low on a lot more nutrients than just B12 since gluten, or NSAIDS, etc can damage our intestines and stop us from absorbing nutrients.

I'm figuring all this out now too. I've been GF since '05 due to celiac disease, but I couldn't digest nutritional supplements until a couple of months ago and I'm feeling much better now that I can. I still have OI, but my thinking is much clearer and I feel stronger. Not so much muscle weakness ...

Hey,

That's great that you've figured out that you can get out more. You sound like me with feeling great just from laying down for a bit. I usually need an hour of laying down flat with my eyes closed and being quiet and then I'm good to go again ... I wish I knew why this worked ... I'm looking at a kidney connection since when I get up I have a completely full bladder ... I'm looking at purine metabolism / uric acid since if this isn't working we're not breaking down free radicals and are storing peroxynitrates.

BTW. Have you looked at your BG levels ? I found that eating a small real meal (meat and veggies + glucose source (OJ works great)) every 3 hours is critical ... snacks don't work ...

I'd look at what you ate or drank for this problem though ... John Hopkins says that we should look at food intolerances first for OI ... While not exactly the same, I have a freind who's BG level dives down to 40 and she faints, etc. if she gets any dairy whatsoever ... it's bizzarre really what foods can do to us ... IMHO, anaphylaxis from peanuts is just the tip of the iceberg ...

BTW, I realize that not all dysautonomia is from foods but it's an easy place to start ... gluten, dairy, soy, eggs, corn, shellfish, nuts are the most likely suspects ... WE ARE NOT GOING TO BLAME CHOCOLATE FOR ANY OF THIS ...

Thanks for all the replies ... I looked up emetic and all I could find was what would happen immediately BTW ... BE CAREUL here ... salt overdoses can kill ... who knew ?????

I hope I haven't done any damage to my digestive tract ... I couldn't find anything on it .. probably not though, since I'm ok food wise ...

Interesting info on the urine test. My doc took a look at my blood work and said my sodium was fine ..

I'm sticking to salt in my food for now .. I really should make some broth ... I understand it is great for leaky gut ...

BTW. I asked in the first post if anyone had actually healed themselves with this but I didn't get an answer. I haven't made any progress whatsoever by doing this ... sure it helps me short term, but who wants to keep salt loading forever ... and of course, those special salts have minerals, but not nearly enough ...

I did some reading and ran into a few who eliminated their dysautonomia by chelating ... so I guess that's next ...

Here's that article that mentions nutrinerve ...

http://www.pubmedcentral.nih.gov/articlere...#b12-tcrm-4-837

Here's the link for a study on benfotiamine ... BTW, it's just a lipid soluable from of thiamine.

http://www.ncbi.nlm.nih.gov/pubmed/10219465

Thanks Sophia,

That makes perfect sense. I wasn't watching to make sure it was totally dissolved in my water. DUH !! It's always the little things that nail you ...

Speaking of salt loading, has anyone gotten any better from this or is it just another short term solution / treatment ?

I read an article yesterday that said using Nutrinerve which is ALA, GLA, benfotiamine and borage oil might help. This seems like more of a solution rather than a short term treatment. The link to the article is in thread about copper.

I always look and feel better when I've gotten my omega 3s. I haven't tried the benfotiamine (actually, I may have but I don't know what it is yet and where it's found). I was taking borage oil but I need to buy some more.

Ideas anyone ?

Thanks for posting this ...

I was wondering about this ... So I googled dysautonomia copper mercury and found this article. It's a case study of a man with dysautonomia who had a very thorough workup. Near the end it says that heavy metals have been linked to dysautonomia. I was astonished to see all the other possible causes ...

http://www.pubmedcentral.nih.gov/articlere...#b12-tcrm-4-837

While heavy metal exposure has been linked to peripheral and autonomic neuropathies, our assays for lead, mercury, nickel, chromium, and copper were normal (Rubens et al 2001).

And the article takes you to this reference ...

Rubens, O; Logina, I; Kravale, I, et al. Peripheral neuropathy in chronic occupational inorganic lead exposure: a clinical and electrophysiological study. J Neurol Neurosurg Psychiatry. 2001;71:200?4. [PubMed]

His labs were negative for this BTW .. regardless, it's good to see a study has been done on this so hopefully you're on the right track. I'm assuming you can link to it directly from this site.

On a side note ... I found this article interesting because among a ton of other stuff, they recommended something called nutrinerve with ALA, GLA, benfotiamine and borage oil ... and later go on to say that it could've been this that helped ... now to figure out what these are ...

" (5) the use of ?NutriNerve? (alphalipoic acid, gamma linoleic acid, benfotiamine, and borage oil). "

Marcia

It's always something ... Anyone else run into this ? I've been using celtic or sea salt since May 08 and it just started bothering me. When I first started salt loading I noticed if I put some on my hand and just licked it off, my stomach would hurt so I stopped doing that. Can too much salt damage your stomach ? Any solutions ? Have they done any studies on this ? Does this happen to everyone who salt loads ?

I've been staying away from things like Gatorade because of the chemicals, but is that a better alternative ?

Thanks ...

BTW. I'm a celiac with other digestive issues so maybe my digestive tract is just overly sensitive ...

If it's a cough related to congestion then plain Mucinex worked for me. And for the tickle itself, those zinc lozengors worked well ...

Sorry to hear you're sick ..

BTW, I tried Benadryl capsules for my runny nose and felt too dizzy to stand up .. I kept running into things and bruising myself too. My doc recommended Zyrtec or Claritin. I tried the Zyrtec, but that knocked me out during the day.

There was no detectable snoring during the study. There were only some respiratory effort related arousals and a rare hypopneic event. There was no oxygen desaturation.

This caught my attention ... I wonder why you'd wake up for this ... I'd have to google hypopneic event ... Is it possible to have sleep apnea without snoring ? Or to have just a little sleep apnea ?

I was looking at this thread because I have nocturnal myoclonus which means my body jerks as I go into REM. Did your sleep study look for this ? I didn't see it ... I'm not sure why this happens but I'm assuming it was related to gluten since it's not happening now unless I accidently eat it.

Also, I had the daytime test for narcolesy the next day too but since I jerk myself awake when entering REM of course I tested negative for narcolepsy. how did the doc miss that one ?

I took provigil about 5 times before giving up on it. It worked great at keeping me awake but it kept me awake most of the night too ...

Not to beat a dead horse, but within a week of getting the wheat out of my diet I stopped nodding off like this ...

However, in the last year or so, I've found out that if I eat too much chicken or turkey (tryptophan) I have excessive daytime sleepiness .. I went on a turkey and dressing eating binge once where I ate it for a few days in a row and just could not wake up ... That was how I figured this one out ..

Hot flashes are waking me up nowadays, so I've been experimenting with melatonin but read that chicken / tryptophan converts into melatonin so I decided to try it instead ... I don't know what's worse ... waking up at night or being too sleepy to function during the day ...

HTH ... Marcia

After just reading this article I was really impressed at how detailed the findings were and how closely they resemble the symptoms of CFS and OI. It amazes me when I think about so many doctors telling me these symptoms were'nt related to any illness other than depression. I was really impressed when I read about patients having excessive thirst and excessive sweating. Those are two of the many other symptoms my daughter has had and none of her doctors had an answer for. I never knew one could be tested for low blood volume, I always thought it was just assumed because of the blood pooling. Very interesting article. Thank you for putting it here. It gives me hope to know that these studies are being done.

I'm confused here ... I thought CFS and POTS / OI were known to be related. I see OI stuff in my CFS research all the time ... granted it is just one symptom of CFS though. The others being sleep disorder, neuro problems, IBS, chronic fatigue, swollen lymph nodes ..

BTW. I'm glad you saw this article and you were able to see your daughters symptoms here. It has certainly made a difference in my life being to see all this info on the internet ... Take Care ... Marcia

PS. Not to be pushy cause I hate that, but have you had your daughter tested for gluten intolerance ? She and I have so much in common ...

Boy those mice are really getting healthy ...

I wonder if it's the Indian diet as opposed to the curcumin in India. Maybe not .. from the looks of it, it would make me sicker. I can't handle all those carbs. Maybe if someone has been eating that way their whole lives they can though. Or maybe it's a genetic thing ....

http://www.indianchild.com/vegeterianism_in_india.htm

Rural Indian food in India is often vegetarian. Food items like roots, cereals, pulses, wheat, rice, form the main portion of the diets. Many Indians, being farmers, find it cost-economical to stick to a vegeterian diet.

BTW, I was getting GERD from the curcumin so I backed off of it for a few days ... I seem to be ok now ...

You need to call your doctor tomorrow and see what's up. It sounds like this med is just too strong for you ..

I have CFS/ME/FM with OI and I took BC for years but never had this kind of reaction to it.

Hope you feel better ... Marcia

I've been reading on this topic also. I don't think it's a cure for anything, but at least it's only typically used as a food herb, so not like some of the odd stuff we've seen pop up all over. I don't call anything a cure, so I guess I'm a cynic, but I learned long ago not to get my hopes up too much. morgan

I hear ya .. it seems like the supplement industry is on a roll announcing some new study every day. So, it's hard to know what to try. I have added tumeric to more of my food lately, but that's as far as I've gotten. Oh and I finally got some nutritional supplements that I'm digesting ok. I figure that can't hurt ...

http://www.ncbi.nlm.nih.gov/sites/entrez?D...ubmed_RVDocSuml

Curcumin labels amyloid pathology in vivo, disrupts existing plaques, and partially restores distorted neurites in an Alzheimer mouse model.Garcia-Alloza M, Borrelli LA, Rozkalne A, Hyman BT, Bacskai BJ.

Department of Neurology/Alzheimer's Disease Research Laboratory, Massachusetts General Hospital, Charlestown, Massachusetts 02129, USA.Alzheimer's disease (AD) is characterized by senile plaques and neurodegeneration although the neurotoxic mechanisms have not been completely elucidated. It is clear that both oxidative stress and inflammation play an important role in the illness. The compound curcumin, with a broad spectrum of anti-oxidant, anti-inflammatory, and anti-fibrilogenic activities may represent a promising approach for preventing or treating AD. Curcumin is a small fluorescent compound that binds to amyloid deposits. In the present work we used in vivo multiphoton microscopy (MPM) to demonstrate that curcumin crosses the blood-brain barrier and labels senile plaques and cerebrovascular amyloid angiopathy (CAA) in APPswe/PS1dE9 mice. Moreover, systemic treatment of mice with curcumin for 7 days clears and reduces existing plaques, as monitored with longitudinal imaging, suggesting a potent disaggregation effect. Curcumin also led to a limited, but significant reversal of structural changes in dystrophic dendrites, including abnormal curvature and dystrophy size. Together, these data suggest that curcumin reverses existing amyloid pathology and associated neurotoxicity in a mouse model of AD. This approach could lead to more effective clinical therapies for the prevention of oxidative stress, inflammation and neurotoxicity associated with AD.

PMID: 17472706 [PubMed - indexed for MEDLINE]

One more reason to use Tumeric / curcumin. OR at least feed it to a mouse ...

Thanks ... These are some great articles ... I particularly liked this part on how our pipes are too small.

http://www.anapsid.org/cnd/diagnosis/oi.html

In fact, the blood vessels in CFIDS seem to be constricted dramatically, and yet attempts to restore normal blood volume (through use of Florinef, salt, saline injections, transfusions) have met with only limited success so far. "All of the body's normal mechanisms to restore blood [when it is lost in other ways] seem to be turned off." It is as if the CFIDS body <wants> to have low blood volume and that its blood vessels want to stay constricted. Bell likens the blood vessels to water pipes that are only half the proper diameter - you simply cannot make a metal pipe hold any more fluid than the pipe is built to carry.

"When you tell people about these findings, their immediate question is, ' What happened to the blood? Where did it go?' The answer is we don't know. It's not like the patients bled out or are dehydrated - although they do experience a lot of thirst." Turning to the audience, Dr. Bell noted that his patients carry "buckets of fluid" with them at all times - an observation made by other clinicians. "How many people here also have excessive thirst? Whoa - look at all those hands!" It's as though some rudimentary alert system is crying out for more fluid, but because of the vasoconstriction, it just gets flushed away.

Anyone besides me always have trace amounts of blood in their urine and stools ?