Dizzysillyak

Congrats on your improvement and all your hard work ...

I had a viral onset to my CFS/ME/FM with orthostatic intolerance back in 1990 so I've been wondering about this too. My initial symptom of CFS was a re-occuring URI and extremely low body temp. I caught something in Jamaica in 1987 but don't think it was that. I have too many other issues that were there before.

I get a smelly drainage from my nose from time to time that I would best describe as fungal or bacterial. And my right ear gets a minor infection (itchy and watery) every week too that bubbles when I use peroxide in it. I just had some much needed dental work done in order to see if that would help but so far it hasn't. I've been treating the nasal drainage with olive tree leaf nasal spray but it hasn't helped yet.

I've been going through a really bad spell with my OI for the last couple of months. There were even a few days where I could barely stand at all. But most of the time, I could stand up but only for 15 - 60 minutes without feeling like my body was too weak to stand up. This was verified when I layed down and could feel my body collapse into the sofa. I'm almost back to my old OI where I have to lay down every 3 or 4 hours for an hour if I want to think ...

What appears to have helped me in the last week has been taking Virastop ... again ... I'd noticed several years ago that taking this 3 times a day made me feel stronger and reduce my need to eat as often. I'm hypoglycemic and a relatively newly diagnosed celiac so I need nutrition in order to function. My maintenance dose is one a day ... I suspect that the digestive enzymes are providing me some additional nutrition too.

I was taking this most of the time for the last 5 years but stopped at the advice of someone I trusted who said it wasn't a good idea to treat anything all the time. Granted that may be true and the fact that that I need to continually treat, may mean that I need something stronger. But IMHO, stopping this triggered my last bad spell of OI.

IF this is true, each of us will have to determine what type of fungus, virus or bacteria we're dealing with though ... Another CFS freind, who I trust, has recommended MMS. It cleared up an infection for her in a few days ... I'm sticking with the Virastop for now.

FWIW ... I took a Tyrosine and a Taurine an hour after writing this and was the Energizer Bunny for 12 hours ... Just wanted to let you know that I have no idea now what's causing my OI ...

but autoimmune stuff runs in my family,

at the risk of sounding like a broken record, , you may want to look at celiac disease or gluten intolerance .. the glutenfile is a great place for info on this ...

FWIW though, I'm a celiac who's been on the GF diet for 5 years now and I still have orthostatic intolerance. I've found that adding 1/4 tsp of salt to an Emergenc 3 times a day, taking 2 Solgar essential aminos every few hours but especially in am before getting out of bed and taking DHEA have helped me some with my symptoms .. My doc is currently looking at my hormones, esp my adrenals.

IMHO, Integrative doctors appear to be our best resource when trying to figure this out.

http://www.vitacost.com/Natural-Factors-5-HTP

I've tried 3 different 5HTPs and this is the only one that works for me. IMHO, it's very important to start this slowly. I took 50 or 100 mg the first time I tried this and it felt like my brain froze up. I was considering calling 911, but waited it out instead ... ... The next time I tried it I ony took 25 mg and was fine. Now I go from 50 mg - 300 mg depending on my insomnia. I think part of the reason I can sleep some nights and I'm wide awake other nights is from my hormones since I have hot flashes.

After I wrote my other post, I remembered that I have lower back / right hip pain that hasn't responded to anything I've tried. I have a disk problem that I really need to have re-evaluated ... getting old is **** ...

Sue,

I wouldn't consider surgery if I were you .. not until you've tried some holistic treatments.

I have bad neck and shoulders due to 4 whiplash injuries and one concusion from being thrown into 3 feet of water onto my head. For 16 + years these areas were in spasm most of the time but now it's gone. I'm not sure what helped since according to the internet, a large varietyof things will help this. Like fish oil, the low oxalate diet, an anti inflammatory diet, Virastop, Calcium / magnesium, etc etc ... This is a list of what I'm doing, but there are other treatments. I've never tried the glucosamine / chondroidan (sp?) ...

The chiro, electric stem and massage treatments I had all those years never lasted very long ... 24 hours maybe ?

BTW. What's up with your sleep ? That makes a huge difference in my pain levels ... Have you tried 5HTP or theanine ?

I hope you don't mind me posting this here too ... it's another great discussion on chronic hypoglycemia. I'm dense so the more I read about this the better I understand it ...

http://www.forums.aboutmecfs.org/showthrea...ht=hypoglycemia

I can't say that I necessarily have that.

It seems the more I do the better I feel but I do reach my limit I think where I just get tired and I've done enough for one day.

I seem to bounce back fairly well so long as I get good sleep.

That's good to hear ... Have you been tested for food intolerances, gut bacteria or nutritional deficiecies ? This reminds me of how I felt before I developed celiac disease and was just gluten intolerant. I noticed that you were taking Advil. NSAIDS are known to cause gut damage so it's best to avoid those. My EGD actually stated that the damage to my gut was either from celiac disease or the use of NSAIDS ...

Also, are you still anemic ? This is very common in celiacs ... not sure how else this can happen though .. It will happen with female problems of course, but I'm sure you'd know if that was happening. Is that B12 or iron anemia ? both are common in celiacs though ...

FWIW ... If you're not taking probiotics that may help you right away ... I'm using Country Life dairy free right now and it appears to be helping. Helios kefir worked great for me for awhile too though ... Plain organic yogurts are ok too ...

I can't imagine going through this with 4 kids ...

My three hour test was even stranger.

Start --74

1 hour - 60

2 hour -84

3 hour -80

I was feeling like crap throughout the whole test. Granted it was years ago. I was told it was reactive hypoglycemia and that I would get diabetes, but I never went high. I've had readings of as low as 12 for blood glucose-- most of my low readings are in the 30s. I carry food with me at all times and eat throughout the day. I usually can't go 90 or more mins without eating / getting mean and can drop up to 4 pounds a day if I don't eat. Thoughts?

Sara

I felt the way you're describing even a year after I'd eliminated gluten, etc due to what we think was celiac disease ... I couldn't break down the foods I was eating. I was very low on iron and B12 at that point too. Have you seen an integrative doctor and / or had your food intolerances, gut bacteria and all of your nutrient levels tested ? IMHO, this would be a good place to start .. It turned out that I was low on quite a few nutrients when I finally saw an integrative doc who had them tested for me.

Before I forget, my orthostatic intolerance didn't get worse during my GTT w/ insulin when I had it done in June 2010 ...

My bgl and insulin ...

fasting bgl was 86, <2

1 hr ... bgl = 113, 81

2 hr ... bgl 61, 29

So far the only thing I know of that increases my OI is if I push myself for too many days in a row and am dealing with PEM (post exertional malaise). If I rest up for 1 - 3 days after exerting myself, aka running errands in my case, I'm still affected by it but not the extent that I have to lay down every few minutes ...

Do you get post exertional malaise ? Meaning if you've been active for "x" amount of time one day, the next day and for up to 4 days, your body will feel like you've been run over by a bus ... This is what happens to me and is considered a symptom of CFS.

If I rest up for 3 - 4 days, the next day I'm out running errands, I'll feel a little tired but I can stand up ok. If I push myself and try to run errands for a couple of days in a row, my body feels heavy and my brain just won't work ... no amount of caffeine and no supplement I've tried yet has fixed this. Eventually if I continue to push myself, I won't be able to stand up without feeling like I HAVE to lay down, much less make it out of the house ...

Pacific Labs has a test for this .. if you need the link I can get it for you ... or probably googling CFS Pacific labs test will get it ...

BTW. congrats on getting out ...

Sue,

Wow ... great find ... thanks for looking at this further. I copied this in from that article ...

Our findings suggest that insulin-mediated vasodilation is not due solely to a direct stimulatory effect of insulin but involves additional mechanisms activated only during systemic hyperinsulinemia.

Do you know what this means ?

I've noticed in the last few weeks that when I eat anything sweet, I just don't feel well. After getting my GTT, I could see how eating too many carbs or sugars at one time was a problem. I may have to back off all carbs and fruits for now ...

I've also been hypoglycemic for at least 20 years ... and I found out that I'm a celiac in 2005.

Sorry, I haven't been much help but my OI has been horrible lately ...

http://dinet.ipbhost.com/index.php?showtopic=15350

Here's some info on adrenals and blood glucose ...

We were talking about this a month ago too .... boy, time flies when you have to keep laying down every few hours ...

Bumping - correlation between adrenals and blood glucose ...

I don't mind helping at all. I'm probably going to get this done soon too ...

Those labs were way over my head. Other than I recognized a detox problem. It's great to see that you don't have a dysbiosis problem. Not to be a pest, but the folks at PR (Pheonix Rising) will know what those labs mean. You've heard of RichV (from the glutathione depletion - methylation cycle block theory) right ? He's over there quite a bit and will know what those tests mean.

I saw the NutrEval is Genova Labs test. Do they have a list of practitioners who use their labs ? If not, a DAN practioner will understand those.

I'm always looking for new foods too. I have some recipes at GFAB if you're interested. I'm GFCanary over there ...

I have a seizure disorder so I need more fats too. I've been trying to eat at least 1/2 of an avocado a day lately. It's just not one of those foods that I look at and think yum avocado ... lol ... I made an avocado, coconut kefir, cucumber, raw onion, dill, GSO, S and P dressing yesterday that's really good though.

I love raw nuts but I can't have very many because of the oxalates. I started getting kidney stones a couple of years ago ...

Do you use grapeseed oil (GSO) ? That's a good one for getting some fats and E ..

hope you get this figured out ... Marcia

Thanks for the interesting thread ... Here's a blurb on high glucose and urination. A freind had already told me this but I found it immediately when googling "urination high glucose".

http://kidshealth.org/teen/diabetes_basics...lood_sugar.html

Signs and Symptoms of High Blood Sugar Levels

The signs of high blood sugar include:

?Peeing a lot: The kidneys respond to high levels of glucose in the blood by flushing out the extra glucose in urine. People with diabetes need to urinate more often and in larger amounts.

?Drinking a lot: Because a person is losing so much fluid from peeing so much, he or she can get very thirsty.

?Losing weight even though your appetite has stayed the same: If there isn't enough insulin to help the body use glucose, the body breaks down muscle and stored fat instead in an attempt to provide fuel to hungry cells.

?Feeling tired: Because the body can't use glucose for energy properly, a person may feel unusually tired

One other reason I know that makes me go more often is from having a minor UTI. If I take a B complex or eat too many oxalates, I'll have to go more often. Both cause minor UTIs for me. Taking 2 AZO helps this though ...

I was wondering what role menopause plays in this too. This has gotten much worse in the last few years ... The new belly fat is a testament to how this is affecting me.

http://www.metametrix.com/files/learning-c...ganic-Acids.pdf

This says that you could be dumping organic acids because of nutritional deficiencies, dysbiosis, etc ... I found this when I googled dysbiosis high amino acid ... there were other articles too ...

Sorry to hear that you're feeling irritable. It looks like you have a good reason for it though.

I know I'm weird but I'd be having a gluten reaction to the foods that you're eating. Have you had your gluten antibodies tested lately ? or have you had them tested via a stool test ? My serum is normal now but my stool shows antibodies. I was told that the stool tests are more sensitive.

I keep thinking of ways to google this ... lol ...

Here's what I found when I googled "warning high amino acids" ... it addresses one amino acid at a time though. I haven't found one that addresses multiple high amino levels, have you ? Are you taking probiotics ? From the looks of this, dysbiosis could be to blame.

http://www.merck.com/mmpe/sec19/ch296/ch296c.html

Ana from the first response on this thread had a good point about being retested ...

So much for what they say about taurine giving us energy ...

Hope you feel better soon ...

Sorry to hear about your impending doom ... ... Does this mean that you have Addison's or Cushing's ? I saw that you have adrenal insufficiency but didn't see either of these diagnosises. With you being sensitive to gluten, neither would surprise me. BTW. Are you eating any of those GF foods ? I'm super sensitive to gluten so I get nailed with myoclonus, insomnia and/or adrenaline rushes. HFCS turns me into the Energizer Bunny on crack ...

What struck me about the posters at the ME/CFS board was that they said that the tests weren't good enough at this point. Heck if I know ... I'm a newbie at the whole amino arena and plan on getting tested anyway. My doc has offered to order this for me.

Are you taking any amino acids or protein supplements like whey, rice protein, pea or hemp ? That's the only reason I can think of for having elevated essential aminos. As far as I know these only come from foods or supplements aka why they are called essential. Have you looked at foods that contain these aminos ?

Isoleucine 77 (24.-58) HIGH

Leucine 100 (30-87) HIGH

Phenylalanine 68 (26-71) Close to top of range

Tryptophan 112 (28-111) HIGH

This is the only non essential on your list ... I can't remember right now where taurine comes from but since it's a non essential, an essential has to be in play here too. With taurine this high, do you have a lot of energy ?

Taurine 957 (68-538) HIGH

Sorry I can't be more help ...

Hi Sue,

I'm pooped right now but before I forget, here are my results and a few comments from people I trust at GFAB ... My insulin wasn't tested until this year but I had GTTs in 2006 and 2008.

http://www.glutenfreeandbeyond.org/forum/v...&highlight=

HTH ... Marcia

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My GTT + insulin May 2010 --- I felt a little nauseas and sleepy starting at the 1/2 mark and a little whiney at the 2 hours mark but I never felt shakey or weak.

fasting 86 insulin = < 2

1 hr glucose = 113 insulin = 81

2 hr glucose = 61 insulin = 29 (My doc said that my high insulin was causing this low BGL)

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In 5/2008 - My fasting BGL was 83, 1hr = 182, 2hr = 89 and 3hr = 78

I wasn't surprised it was normal because other than feeling a little nauseas after drinking the glucose and extremely sleepy either after the 1 hr or 2 hr draw, I felt great. I could think and I never got shakey or weak.

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In 2006, my fasting was 83, 1hr = 162, 2hr = 105 and 3hr = 65

Despite a fasting glucose of 83 here, I almost passed out while waiting for the fasting draw and after I drank the glucose my head was so fuzzy, I couldn't think at all. I was also jittery / super chatty .... not good for the other patrons ...

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My doctor's instructions are to stick with the Paleo / low carb diet and if I'm going to eat anything sweet, eat just a little and eat some protein with it. Overall it looks better this year than it did in 2008.

Dana,

I've been out running errands today so I'm too pooped to read this right now ... here are the autism groups that I'm familiar with. You have to join but they don't spam you. Just be sure to select the option where you DON'T get an email everytime someone posts ...

I don't know enough about your test to know if you'll find the info you want here. There maybe someone at GFAB too though ... tc ...

http://health.groups.yahoo.com/group/Trying_Low_Oxalates/

http://health.groups.yahoo.com/group/EnzymesandAutism/

Do you have to take HC ? Could this explain the high values on your test ? How's your cholesteral ? I was reading on my DHEA bottle that you need to have a good HDL before starting this ...

I'm big on avoiding all meds and trying natural means. Which is one of the reasons the dietary approach appealed to me in the beginning. It's when I had tried this for a few years and wasn't 100% that I started looking at supplements and why my body wasn't able to repair itself ... that's when things got really complicated ...

$125 for an IDK doesn't sound like a good deal to me either ...

Do you have access to an integrative doctor ? I have a friend in Maine who sees someone up there if you're interested. Or I can ask my doc who she'd recommend up your way ....

I googled "urine amino organic acid test" and found this. I'm not up on all the terms so I thought you may want to see this asap.

http://www.newtreatments.org/ga.php?linkid=336

There's a thread at Pheonix Rising that I was thinking of when I said that ... here it is ...

http://www.forums.aboutmecfs.org/showthrea...light=essential

IMHO though, your best bet is to post this thread over there ... We have some very intelligent folks over there who may be able to help you ...

I belong to a couple of autism boards so I'll look there too ...

Dana,

I haven't had this test yet so I'm not familiar with this. But, the people at CFS board - Pheonix Rising may be. If not, have you checked out any of the DAN boards yet ? Or tried googling autism and the test name ? This group is most likely to be having these tests run ...

I'll probably get this run next seeing as how I know that taking essential aminos 3 times a day, esp in the am before getting up though, keeps my heart from pounding when I lay down due to OI ...

Don't you just love trying to figure this out on our own ? lol ...

BTW. my pregnenolone came in at < 5 and my doc thinks this is way too low. I think she said that they like to see it around 100. Have you looked at that yet ? I have some info at GFAB if you're interested ... I just googled it though, I'm no where near understanding it all yet.

tc .. Marcia

Since you've had 2 known episodes of hypo previously, I'd look at that again. These episodes don't all feel the same to me either. It really depends on how low my blood glucose goes each time and this is based on several factors including what foods I ate, excercise, the last time I ate a meal, sweating, etc ... it's best to google hypoglycemia so you understand this better.

The Paleo diet is known to help this. It made a big difference for me. My fasting glucose is no longer low ... so I feel much better before breakfast. I can even take a shower now before eating ... before I felt too weak to stand up and had to eat immediately.

BTW, you can feel like crap at an acceptable low level and it's still considered hypo for you ... I think mine was around 80 the first time it was tested in 2006. At that test, the lab tech had to call the doc to make sure that she wanted to proceed because I was white as a sheet and couldn't stand up without leaning on the wall or counter ...

The Paleo diet hasn't fixed my hypoglycemia though .. I've been on the Paleo diet for 2 years now and it turns out that my hypoglycemia is probably genetic. My body just produces more insulin than it needs ... I just had the GTT with insulin so it's clear what's going on. After 2 hours, my insulin was high and my blood glucose was 61. BUT ... my fasting is great ...

Certain foods are known to do this too.

Are you salt loading ? is your BP low ? This helps me sometimes but only if I'm low on sodium ...

This are just a couple of options though. I still get weakness regularly and I haven't figured out where it's coming from yet. My doc is looking at my hormones now though ... Turns out that I'm low in pregnenolone and DHEA ... so I started taking those this week ...

Good luck with this ... Marcia

PS. At this point, I'm betting there's an adrenal connection to all of this. But, I've just started learning about how our adrenals work. There's a thread on this board on adrenals though ...

My guess would be that this feeling is from hypoglycemia. If you look up hypoglycemia symptoms you'll see that the symptoms are the same as the symptoms for anxiety. I get this too and have found that eating a quick sugar source like orange juice followed by a protein helps immediately unless I've waited too long. Then it may take an hour to recover ...

Have you had a GTT with insulin ? That's the best way to really see what's going on with your blood glucose. You can have hypoglycemia from certain foods too so you may want to keep a food journal.

I thought of one other treatment that may help ... If I forget to drink my water with salt in it during the day, I've found that by taking 1/4 tsp of salt and letting it dissolve in my mouth can help. DO NOT Swallow it without letting it dissolve. This is bad for your esophagus. If needed I follow it up with another 1/4 tsp of salt in water ...

Hope you feel better ...

Great news ... I'm sure you're enjoying it ... not to burst your bubble, but I've done this 3 times since 2006 but have no idea why. Each time it lasted 3 weeks ... not that this means your healthy period will end in 3 weeks. Some people spontaneously improve from POTS or CFS.

Yikes. $50 a month for a year sounds like such a rip off ... I hope he's provided some real tests for you. Like a CDSA (comprehensive digestion stool analysis), hormone saliva test, etc ...

On the dairy ... have you looked at what all is in dairy that you're body may be missing out on ? I love dairy ... but ... I get dark circles around my eyes everytime and my doctor said that means I can't have it. I don't get any other symptoms so I was willing to live with the dark circles but that didn't fly either ...

Before you disregard the info about how foods affect us you may want to read this ... Turns out that drug companies know this and are designing drugs to counter act how foods affect us.

http://www.edinformatics.com/interactive_m..._drugs_work.htm

TC ... Marcia

Well the honeymoon is over as they say. Today was just awful as far as heart rates go.

Oh well at least I had a little break and felt normal for a few days!

Dana,

Sorry to hear this. I was rooting for you ...

I had a couple of thoughts. Were you taking probiotics too ? If not, candida or dysbiosis of another kind may be causing your flare. And you may be reacting to a food you ate. My worst ever episode of my heart pounding and feeling like I was going to jump out of my skin was from eating GF cinamon Rice Chex. I NEVER eat processed foods like that so I'm not sure exactly what it was. It only lasted a couple of hours and seemed to respond to drinking some beef broth (the thick stuff made from boiling beef bones with marrow) ...

I think we may be onto something here though ... tc ... Marcia