Dizzysillyak

Yep, I have hypoglycemia too. Actually, via a gtt + insulin, we figured out that I have hyperinsulinemia. Meaning I over produce insulin. Can you get your doc to order this test ? It needs to include insulin. This test and a blood glucose monitor helped me figure out that I start to feel bad if my glucose gets below 80. And I never saw it go over 140. Eating too much fruit at one sitting makes me fuzzy headed right away, nauseas appr 30 minutes later, and extremely sleepy later on. I'm not sure why she has a problem with you checking your blood glucose. Personally, I find doing research on ourselves both entertaining and educational. It only takes a drop of blood. Do you think it's because she's used to dealing with young children ? Tc .. D

Fyi .. Elisabeth Hasselbeck will be on the Dr. Oz show tomorrow talking about the gf diet. It worked wonders for her. She couldn't get pregnant and now she has 3 kids. She turned Bill O'Reilly on to the gf diet too and now he feels and looks better. I'd love to know which patients respond to this diet and which ones need to go on the paleo diet. I felt wonderful on the gfsfcf etc, diet at first too but it didn't last. I even had the energy of a teenager the same month that I started walking normally again. I overdid it, went on a roadtrip, and crashed tho within 3 weeks. After that, I started getting tested for nutritional deficiencies, hormones, gut bacteria, parasites, etc. It turned out that I have celiac, Hashimoto's, hyperinsulinemia, lung scarring, seizure disirder, Paget's, etc etc. I'm "assuming" Elisabeth only had celiac disease that responded to the gf diet. Not everyone's body can heal just by eliminating gluten. Tc .. D

I noticed that I didn't answer your questions. I didn't see any help in my oi / oh and pots from eliminating gluten, etc. But I stopped feeling buzzed 24 \ 7 within 24 hrs, my narcolepsy was gone in 8 - 10 days, my daily need for klonopin for nocturnal myoclonus was gone at 7 months and my ataxia disappeared at 1 year. A multitude of other nuero and digestive symptoms vanished to. My endoscopy and colonoscopy post diet showed that my hiatal hernia, diverticuli, gerd, etc were gone too. : ) My orthostaic hypotension just went away after 22 years in feb after 1 month on the wahls diet. Which is why I suggested you try this diet. I was already on the paleo diet but was eating too much meat and not nearly enough fruits and veggies. One other problem I have that some here may have too is that according to my stool tests over the last 4 years, I appear to over produce gluten antibodies. Minute amounts of gluten cause this test result to be high. Honestly, I was only eating a cookie and some chips the day prior to testing to see if I could eat these foods again. I got my answer. Duh .. Lol .. Tc .. X

I'm not following how epilepsy causes pots. I have petite mals regularly when I'm upright but not while laying down. So I thought my oi / hypoperfusion caused the petite mals. Dr peckerman has an article on this. Fwiw tho, I had petite mals as a kid but never as often as I do now. My neurologist wanted me to stay awake all night prior to having an eeg, so I declined it. That was right after having a 2 hour seizure so I wasn't willing to risk it. Tc .. D

This has been discussed extensively in the cfs community but since I don't have it I didn't follow those threads. Pheonix rising or prohealth boards will have these threads tho. I have cfs but my temp has been low since getting sick in 1990. Fwiw, imho, a diagnosis of cfs in many cases just means your doctor didn't look for root causes of your symptoms. Imho, The same goes for pots syndrome where symptoms are not directly related to orthostasis. Many of us have food intolerances, parasites, bad bacteria, glucose problems and nutritional and hormone deficiencies. Just read some of the threads here on those topics. A functional doctor will look for root causes as opposed to using drugs as bandaids. In case you can't afford to see this kind of doctor, dr terry wahls has some great info on the web. Dr myhill, dr Vikki peterson, dr mark hyman, etc are great reads too. Tc .. D

Hi. There's a lot of info on gluten on this site. Just do a search on gluten. Imho, after 7 years of being gf and watching the gf community both online and in my celiac support group, I'd stick to whole foods like meats, veggies and fruits. Dr terry wahls has some great info on this. Our bodies need the nutrients in these foods. The gf foods are cross contaminated with gluten but we don't have any standards in the us either so it's eat at your own risk. The fda info on gluten standards explains this. I've found the wahls diet plus juicing plus a few supplements are helpng me. We're all different so while diets need to be similiar, bio-available foods, the suplements we need are different. Tc .. D

Thanks .. good to hear .. I guess I should've looked that up before asking ... tc ... d

Has anyone heard from Kayla ? I hope she's doing better and out by now .. Tc .. D

Hmm, my nurse freaked out when she saw that the iv had slipped, because I had a lump, and the meyer's cocktail via saline bag was subq. I don't know why but she thought it was a bad idea. I've never allowed an iv in my hand since leaning the were painful. No one thought it was important enough to fight me over it either. Haha On the weak veins .. Mine were that way all the until I changed my diet. I never found a reason for this on the web back when I was looking. I'm guessing it was a combo of constant inflamation from food intolerances and nutritional deficiencies. Now, I only have a rough time if I'm too cold, dehydrated or fasting for too long. Tc .. D

Tachycardia isn't subjective since it can be measured. Feeling better is. I feel better at the beach but my oi is still there. ; ) Can you give me the link to the study where ttts were done after a saline iv ? My oi definitely improves After laying down for an hour or more. My hr will jump back up to pre-supine level if I get up too soon. Was it being supine that helped or the saline iv ? I haven't seen anyone look cosely at hypovolemia yet. The closest I saw was an article on the anemia if chronic illness. I admittingly still have a lot of terminology to learn in this arena tho. I would expect a hematologist to know this tho. Tc .. D

Me neither. Not ever .. I don't know how many who say it helped were given a ttt afterwards and imho, that's the only way to know if it helped. Otherwise it's subjective. The cure for hypovolemia isn't saline iv. Imho, it's a goofy solution if you think about all the components in blood. I've found a couple of things that help me feel a wee bit better from time to time. No ttt's were taken tho. Taking 500 mg dlpa + 500 mg tyrosine once ot twice a day helps. Mainly it seems to motivate me so I don't care if I feel like poo. I have hashimoto's so these would be impacted. Eating more raw dark leafy greens eliminated my oh after about a month. My pots was the same tho. I need to retest to see if it's still gone. Fwiw. I believe based on what I'm seeng on the web that we're getting closer to getting answers on several chronic illnesses. Tc .. D

Hi jen, I'm not sure anyone can tell you what you can expect with this doctor. Have you considered asking for a second opinion from a chiro ? I certainly would if I were you. If nothing else, it may calm your fears. I have a few auto immune diseases, meaning my body is attacking itself, so I know why I didn't respond to chiropractic care. I couldn't walk or stand without falling into things for 16 1/2 years and nothing helped. Until I eliminated gluten , etc. That was probably gluten ataxia but I don't think we'll ever know for sure. No one ran the proper tests. I still have my auto immune diseases but so far, they're in check. Did you watch dr terry wahls ted video ? She explains all this. Tc . D

Great to hear you responded to this treatment. Has he said anything about home traction or a way to hold your neck in position ? I'm sure finding some relief and then losing it has to be hard too. hugs ... He sounds like my doc when it comes to compassion and intellect. It's nice when you find that combo in a medical practitioner. Personally, I wouldn't listen to the practitioners who are negative about this. It seems that many people in the medical field have inflated fragile egos and can't hear what anyone tells them that doesn't match what they believe. So making an intelligent interpretation of the results isn't possible for them. What a waste of intelligence. It's too bad med school doesn't teach them this ... Tc ... D

I bought a cheap juicer in march but wish I'd gotten the more expensive one. I hear the differencs in how much you get out of your fruits and veggies is substantial. All the organic fruits and veggies are expensive. I couldn't use the pre-made due to gluten cross contamination. Btw. Are these organic ? I'm glad to hear this is helping you. Juicing gave me a ton of energy when I started in march but not now. It could've been the b6 I was taking at that time too. I seemed to absorb it or convert it to p5p better while juicing. I didn't see a difference in my oi. My hr still jumps 30 pts if I'm up for 10 minutes. I made the mistake of not drinking enough water while juicing and due to my oxalate problem, I got a kidney stone. I just wasn't thirsty after drinking this. Duh .. Good luck with this .. D

Food poisoning can affect only those with a weak immune system. That's why they post the warning sign about this in the fresh seafood section of grocery stores. I had it 3 times last year. Once from cooked oysters, once from cooked (maybe not enough) pork and I forgot the other culprit. I took drugs for years for my gi symptoms but eventually the drugs didn't work. The probable damage caused by eating these foods and taking drugs with side effects can add up over the years. One only has to look at how drugs block nutrients to see this. Migraines have been linked to certain foods for at least 4 decades now. I have a relative who went thru extensive testing in the 70's and was found to react to hot dogs. The drug companies don't want you to know this tho. Neither do their reps aka our doctors. Tc .. D

Can you relate this reaction to something you ate ? I do this if I eat too much watermelon. And yet I do it every year ... lol ... This is a normal response to a dietary intolerance. From my experiences with food poisoning, if it were a toxin, you'd be going to the bathroom non stop until your body had rid itself of the toxin. I did this 3 times last year ... duh .. Try keeping a diet diary and look for a pattern. tc.. x Ps. I can't imagine this is good for your dd either. I'm not awake today so I can't remember exactly how it works but either gluten antibodies or gluten go straight to babies when nursing. I think it's on theglutenfile tho .. if not i remember someone discussing this on glutenfreeandbeyond ...

Rich, Imho, i wouldn't use studies to determine what foods suit your body. We're all different so our bodies require different foods and that we avoid certain foods. Not to mention, imho, most studies are flawed. I don't know if you have leaky gut but if you do certain proteins that should go through your digestive tract without causing a reaction will now trigger an immune system response. If you're interested in learning about this listen to dr terry wahls ted video. There's nothing new about this. It's just not been taken seriously by drug reps aka our doctors. Learning about the functional medicine approach to health vs traditional or even holistic where they try to put bandaids on symptoms should explain this too. The marketing industries have a hold on healthcare, traditional and holistic, and we patients / consumers are prey. Tc .. D

Ask him what would cause low blood count / hyopovolemia ? If you don't look for and treat the cause , you'll get this again. Tc. D

I agree with sue. Low iron can make you feel horrible. Don't be afraid to push for your prescriptions. Most times it's the squeeky patient who gets the script. lol .. Oh and I'd let my fiancee deal with his parents too. It will sound better coming from him. Fwiw. Low iron is a common symptom of celiac disease. Tc .. D

I stick to the rda on sodium which is 2500 - 3000 mg a day. Any more and I start feeling sick. I wouldn't take 10 g either because of what sodium does to our bodies. Do you know if they've looked at long term complications of salt loading on us ? Overall tho, I'm not at all impressed with our specialists. It seems all they do is run the same tests, get the same results and prescribe the same drugs. I woud've thought they'd learned something by now. Tc .. D

Rich, I see you're taking the vegan approach to healthy lifestyle, which I totally respect, and while that works for some it doesn't work for everyone. This leads to a lot of people sticking to a diet that doesn't work for them. Dr myhill, cfs researcher with functional medicine approach, with over 2000 patients should know this by now. Have you looked at the ancesteral health movement or some of the paleo info ? Rob wolf was a vegan too. But there are other paleos who tried this, got sick and realized they were missing ot on important nutrients. Once a week isn't enough when are our bodies are looking for these nutrients all day everyday. I actually have to eat real meat 3 times a day or else I feel weak. Granted my digestive tract isn't all there but who's to say yours is either. Processed whey protein or other proteins aren't in their natural forms so our bodies don't know what to do with these. Imho, These are just ways for the manufacturer to make a lot of money. I just learned this myself. Tc .. D

I started juicing in march but it's in combo with eating the wahls diet. It gave me a ton of energy when I started but after a few weeks started causing insomnia. I suspect my body had too much of something by then. I've stopped taking b6 since then and that helped stop the constant insomnia but I still get it sometimes from juicing. I'm guessing I didn't need the b6 anymore but there's really know way of knowing that. I'm still playing with this to see what I can use in it to provide energy and nutrients without insomnia. It may be a matter of quantity too. If you've been eating the same veggies you're juicing, I wouldn't expect any harsh reactions. I'd been on the wahls diet for 2 months prior and paleo for four years so i didn't have any bad side effects. Drink plenty of water to avoid dehydration. I got a kidney stone after a few weeks too and sspect it's because I let my urine stay dark too long. I wasn't drinking enough water. Tc .. D

hmmm, I'm not sure of any better way to see how your adrenals work than by assessing how they hold up under stress. Granted traditional labs can pinpoint for certainty if your adrenals aren't working but from what I heard if these labs come back abnormal your adrenals are in really bad shape. That's why the adrenal fatigue panel is important. It picks it up before they stop working ... Sadly the testing for gluten intolerance isn't working ... Dr. vikki peterson has some great info on this. This is discussed repeatedly by medical professionals in the GF world. Have you tried eating more meat ? I tried going vegan twice now and it didn't work. My body needs the proteins found in meat several times a day. I remember Dr. Myhill saying that these proteins break down differently that other proteins ... making them easier for our bodies to utilize. And that while healthy people can utilize the proteins found in other foods, PWCs need meat. tc ... d ps ... fwiw .. i stopped 4 sleep supplements and the creon my doc put me on 3 weeks ago and was superwoman today ... now to figure out why.

Hi Rich, Have you had your adrenals tested ? Are you using anything that might stress out your adrenals ? Caffeine, sugar, dyes, food intolerances. etc ... I'd be a wreck if I consumed these. I was diagnosed with adrenal fatigue via a saliva test. Believe it or not, Cinamon Rice chex made my heart race so bad once I thought I was going to have to call 911. It lasted for at least an hour. For years I thought it was from gluten cross contamination but the more I read about excitotoxins, the more I can see how it was possibly something else in there nailing me. Have you read up on excitotoxins ? Dr. Blaylock has a book on this but the info is on the web too. FWIW. I can't believe how many things have made it into our diets that fall into this category ... tyramine is interesting too tho. Sorry to hear that you had Lyme previously. I have a freind who's been fighting this for at least 4 years now. Her labs keep showing that her infections are still with her despite taking antibiotics so she keeps trying new ones. She has OI too and serious heart pounding symptoms at times too. I'm not sure how closely she monitors it tho .. Not everyone gets a thrill out of reading their bp and hr like I do ... lol .. here are some sites that I've seen recommended .. since so many of my problems are under control via diet, I'm assuming I don't have Lyme .. I'm assuming I have gluten damage to most of my organs. http://www.mdjunction.com/lyme-disease http://www.lymenet.com/ http://www.underourskin.com/tv tc .... d

1. What scares you most about pots? I agree with Firewatcher on this. But I'm also afraid of getting stuck in a hospital with some idiot know it all doctor who thinks I can eat the crap they call food in a hospital. Or take all those drugs .. FWIW. I realize they're not all idiots. 2. What types of things scare you in real life? Losing one of my kids ...