Dizzysillyak

I had cod worms a year ago from eating cod with worms. I got the cod from a local publix. I didn't

see the worms until I was 1/2 thru eating this. They hide between the thick layers of meat. Other fish can

have worms too. I now break up all the layers of al fish and cook it completely.

One showed up in my stool so it was easy to figure out that I had them.

I had another type of parasites too but I can't remember the name. I have a thread here on this tho.

I've heard that metametrix is the best test for these since it looks for dna. And the others miss

parasites. I'm not familiar with the blood test tho.

This infection made my oi worse but after treating I just went back to the oi I had prior to treating.

Tc ... D

Even tho not technically allowed on the paleo diet, I eat white potatoes sometimes. I crave

them about once a month. So I'll eat one or two to satisfy my craving.

Healthy fats and meats keep me feeling full.

Oatmeal even the gf one gives many celiacs problems. The non gf ones have been shown to be

heavily cross contaminated with gluten.

If you have a celiac or gluten intolerant support group near you, you might benefit from going

to some of their meetings. I was surprised at how many people had symptoms like me.

Tc .. D

I stopped feeling jittery 24\7 after 24 hours. My narcolepsy was gone in 7 - 10 days. BUT I didn't start

walking normally for one whole year. Then it took another year for me to feel healthy at rest. I was eating

gf processed foods tho.

Imho, you're more likely to see a difference if you go to a paleo type diet. Organic meats, fruits and veggies.

Otherwise you'll still be getting chemicals you may have problems with. This will reduce your cytokine

levels too.

Eta. If you google cfs cytokines prohealth you'll find a great article on this.

You can sparingly add gf foods back in

after you've detoxed from the foods you had problems with. Although everytime I try this these foods

make me feel bad.

Theglutenfile and www.glutenfreeandbeyond.org are good references for gf info. Tc .. D

64 - 67. I only get down to this after being supine for an hour if my hr was high before laying down.

Caffeine and certain supplements interfere with my hr getting down to this.

I feel my best at this hr tho. I have pots / aka upright for 10 minutes = 30 pt hr jump. Tc .. D

I'm on the wahls/paleo diet. If I try to eat toxic foods I feel sick.

Dr oz had a show on his yesterday. The author of the book "clean" was on.

Dr teri wahls has several videos out on this. Her ted video, imho, is her best.

Imho, it's really just a matter of eating cleaner / bioavailable food because once a person's body becomes

damaged with a chronic illness we can't handle all those toxins.

Tc .. D

Ps. imho, I'd beware of caffeine. It may make you feel better at first but it is a drug and has consequences.

If you google how caffeine works you'll see what all it does.

Hi sue,

I'm still not thinking clearly enough to research this but wanted to mention it seems to me what

they're saying is that their bodies compensated chemically for fluid shifts. Following the chemical trail

is the part I can't follow yet.

I realize weightlessness

takes all pressure off the nerves too. We need some potsies to spend time in an antigravity

room to see if our symtoms go away.

My oi resolves if I lay down for an hour but come back as soon as

I get up. It takes my body an hour to recover from hypoperfusion. I used my bp monitor

to help me determine this. In the last 15 minutes of being supine, my hr goes down

another 10 - 15 pts. It's then that I feel completely healthy again.

Since most of my me/cfs symptoms

other than those from oi have been gone since oct 2007, via healthy diet, it's easy to see how this works.

Tc .. D

Hi Issie,

Good point on the leg exercises. When I had ataxia my legs felt like they weighed 100 lbs each but that went away majically at the same time my ataxia did. The strength in my legs wasn't there tho and it took me a few months to walk without my leg muscles getting tired. Excercising to get these as strong as possible might really help. I'm finally experimenting with some compression garments too.

I got a kick out of the kid part of the video but the actual facts behind fluid shifts in astronauts was something that hadn't caught my attention before. I was channed surfing on tv when I caught this ... This would've gone right over my head as a kid but my science background was non existent. I could cook and sew tho ...

tc ... d

Hi,

I'm not sure what kind of reaction you're looking for. I used to love eating bread and found it very satisfying but then I became a celiac and the fun stopped.

Pickins on tastey gf bread from a grocery store can be slim. Esp if you're trying the ones with the 20 year shelf life or the ones that have been kept in the freezer for who knows how long ...

I've only eaten a few GF prepared breads from the stores but I used to eat the Whole Foods brand Prairie bread and loved it. I had a slice of UDIs raisin bread the other day and that was good. I've heard that their other breads are good too.

I found much better breads and other gf foods at my celiac support group meetings where they made their own. There are a lot of good gf recipes on the web. www.glutenfreeandbeyond.org has a recipe section. I went to a Paleo / grain free diet because of blood glucose issues two years post gf diet.

tc ... d

Interesting thread. thanks ... I've had 4 whiplashes and a concussion from being thrown in 3 feet of water onto my head. It was one year post 2 of the whiplashes back to back that I got ME/CFS/OI. It's interesting to me tho that my neck and shoulder symptoms (constant spasms) went away about 4 years after changing my diet. 2 years post low oxalate and paleo. Although like others have said I feel weird if I try to talk with my head turned.

tc .. d

http://www.nfra.net/fibromyalgia_rosner_4.htm

Cranial Nerve deficits: 14/37 demonstrated unilateral or bilateral Horner’s syndrome. 21/37 had CN V abnormalities including absent corneal reflexes. 7/17 demonstrated CN VII abnormalities (not including dry eyes, dry mouth, or hyperacusis) and 17/37 had abnormalities of hearing (not including tinnitus). 20/37 had CN IX, X, XI abnormalities, most commonly absent gag reflex and oropharyngeal sensory changes.

Abnormalities of convergence, nystagmus, head tilt, skew deviation, esophoria and tongue weakness were common. Upper extremity motor deficits were identified in 36/37 and 35/37 in the lower extremities.

Hyper-hypotonia and atrophy were frequent. 32/37 had abnormalities to pin, touch, vibration or temperature sensation. 24/37 demonstrated hyperreflexia, and 17/37 demonstrated hyporeflexia. 34/37 had abnormalities of gait, 27/37 a positive Romberg’s sign and Babinski’s and Hoffman’s sign were present in 18 and 8 of the 37 respectively.

Conclusion: Neurological deficits can be identified in those patients with NMH/POTS. These deficits localize to the brainstem .and upper cervical spinal cord and when identified should lead to a detailed radiological evaluation of these regions in search of remedial compression.

Sue, Is this your link ? I'm looking at it now ...

http://forums.dinet.org/index.php?/topic/19617-headneck-possible-contributor-to-pots/

Good catch sue,

I was looking for more on this and found this right away. I'm still looking at this but I'm dealing with some health issues so I'm not as coherant as I'd like to be. tc ... d

FWIW. I don't urinate as much when I'm not fighting a UTI. But I get kidney stones so this is something I deal with regularly.

http://www.nasa.gov/pdf/146855main_Get_A_Leg_Up_Student.pdf

When astronauts first travel into space, they feel as if they have a cold and their faces look puffy. Many astronauts talk about not feeling thirsty because of this fluid shift. The body records this shift as an increase in blood volume. The body takes care of this fluid shift by eliminating what it thinks are extra fluids as it would normally – that’s right – through the kidneys -- resulting in visits to the restroom. Once this "extra fluid" is flushed from the body, astronauts adjust to space and usually feel fine.

Oh! So looks like a lot of us get this. Yes! Brain-zaps would be the right word for it.

This is interesting because I got checked for Celiac disease and don't have it but I was reading that you can test negative for Celiac but still be gluten-intolerant?!

I actually don't get severe digestive symptoms from gluten but I hardly ever take chances. I'm on a paleo type diet. My body just decides to dump everything I ate via the runs if I get too much gluten. No real pain other than a spasm or two. But I can't get too far away from the throne for several hours. I know some celiacs who don't get any signs until they've eaten too much for days in a row. One person I know only gets grouchy.

A lot of people are finding out that they're gluten intolerant but not celiacs. More and more medical professionals are figuring this out now too. Theglutenfile is a great resource for how the medical profession has learned in the last few years how gluten can damage other parts of the body not just the celiac section of our digestive tracts.

tc ... d

PS. Please look into other possible sources too. I only know about gluten because its what I react to neurologically but I know others react to other foods or chemicals.

BTW. If you have a pet, they may feel better on a grain free diet too. My dogs coats were a mess and they were on steroids and benadryl non stop until I changed their food.

I used to get this too. In 2005, when I first found the celiac dot com message board there were a lot of people talking about this. They called it buzzing. They also were talking about the brain zaps I used to get too. For me and those on that board, this was directly from eating gluten and subsided once we got the gluten out of our diets. I actually appear to have had gluten ataxia too that resolved one year post gf diet. I never fail the Rhomberg, kow, now but I did from Jan 1990 - Sept 2006. I still get myoclonus, jerking, from minute amounts of gluten.

If you google theglutenfile, you can see what all gluten can do to our bodies. Things like this are why the gf diet is so popular, not that it's a fad. tc ... d

PS. I'm not up on neuro symptoms from other foods because I'm an undiagnosed celiac but there's info on the web about these. Gluten, dairy, corn, soy and all chemicals in our food and environment are the most common possible culprits but that doesn't mean you can't be intolerant to something other than these. I react to gluten with neuro symptoms, get phlegm immediately in my throat from soy, get shiners from dairy, etc etc ... As you can see most of my reactions are not digestive.

Hi issie,

I didn't watch the video yet, , but I just wanted to quickly comment that one thing they typically
leave out when discussing the mediterranean diet is the yogurt, typically homemade, these people
eat with lunch and dinner. I'm not sure what other fermented foods they eat.

Fwiw, I cooked like this for several years in my late teens and early 20's. I didn't know it at the time but I'm a DQ2, gluten intolerant, so of course this diet didn't help me. I was hyper and moody at the same time. I can only
imagine what eating all that wheat did to me.

I've recently backed of most oils, esp when cooking, and my digestion is better. But for full disclosue,
I'm also on Creon for low elastace, my gallbladder is mia and I'm a celiac. I was eating a lot of these successfully
from 2008-2011 tho. Maybe h pylori and parasites damaged my gut last year so that's why I can't handle these now. Heck if I know.

Tc .. D

I tried exercise routines many times and while my muscles got stronger and I could do more

I had chronic pem. I pushed myself thinking my chronic pem would stop but never did.

Fwiw,

I was egged on to push myself by exercise enthusiast who thought I'd hit the same wall they

did. I completely understand that this makes sense to those who've never experienced pem.

My symptoms of chronic pem were muddled thinking including obsesssing about exercising and

lack of coordination when trying to perform tasks like writing or chopping veggies. And feeling

exhausted all the time.

I've yet to find a solution for pem but my experiences are limitted by my finances. Tc .. D

Ps. Exercising when completely supine helped me too but even that didn't stop the pem.

My circulation is only good when I'm completely supine, partial doesn't help so recumbent bikes

don't work for me.

Hugs. I'm so sorry to hear this happened to you. I'm at a loss in understanding why your hubby

isn't insisting that you rest more. Maybe your gyn or a freind can explain this to him. Do you have a family

member or freind who could help out ?

Not to add to your burden but eating as healthy as possible and getting a good night's

sleep even if you have to use meds or sleep supplements will help your body heal faster. If you're

not allergic or otherwise opposed, I used to find boost or ensure helped build up my strength.

There are many possible causes of oi so it's hard to say if that's why you're feeling puny. The tests being

run by integrative / functional doctors may find and help you treat your cause.

Fwiw, celiac disease and gluten intolerance have been associated with both pregnancy issues and oi. I'm post menopausal so I

haven't done extensive research in this but Elisabeth Hassekbeck from The View had pregnancy issues

associated with gluten intolerance / celiac and I'm sure she explains it somewhere.

Tc .. D

Short simple clip by NASA on how an astronauts blood changes in space. Just scroll down the page and click on play. No need to search again. tc ... d

http://www.nasa.gov/audience/foreducators/nasaeclips/search.html?terms=%22Our%20World%3A%20Fluid%20Shift%22&category=0000&disp=grid

HI Katy,

Sorry to hear you're dealing with this. I did this in response to a muscle relaxer (Skelaxin I think) I was taking. I even saw an eye specialist who was supposed to be up on neuro connections and he didn't suggest it might be my meds. What a waste ...

I only figured it out because a freind of mine pointed out when I had it and when I didn't. And it was only there on the days I took that med.

I don't know how common my reaction to this med is tho. Hope you figure out what's causing yours. tc ... d

I've been gf for 7 years now and will never go back to eating it. I felt less shakey by the end of the first day, my narcolepsy was gone in 7 - 10 days and I started walking normally (ataxia) after 1 year. I read that it takes a year to get over gluten ataxia.

I've actually been paleo for 4 years since I appear to have trouble with other grains too. I'm currently experimenting with grains and legumes again. I don't feel as bad right away when I eat these now but I'm not sure why. Or if these are causing problems later in the day. It feels like a blood glucose problem.

theglutenfile has some great info on this ... tc ... d

Hi pumpkin,

Glad to hear your surgery went well. Hope the new med works out for you too. Tc .. D

Thanks Katybug. The first time I had this it was scarey but now that I know Klonopin stops it, I'm not so worried. KOW. I carry Klonopin with me all the time.

Good tip on making sure I'm well hydrated and my blood glucose isn't too low. During my last experience I couldn't eat or drink without being in pain or nauseas so there wasn't much I could do. I'm definitely avoiding fasting blood draws from now on tho.

From what I've read my seizure like experience lasts longer than the expected vasovagal response. The trigger still looks vasovagal tho.

tc ... d

Thanks E. I get what you're saying but I'm not sure where that leaves me. Maybe it's not an orthostatic intolerance problem. This just happened to me at the ER Saturday and they were surprised when it didn't stop. Me too ...

Two of my seizure like activities don't stop on their own but I rarely ever have these. I'm thinking my problem during those draws and IVs was that my blood glucose was too low. I'm certainly not looking forward to my next blood draw tho. tc. d

Hi All,

Is anyone else doing this ? What have you found that helps ?

I've been having seizure like activity with blood draws and IV insertion in the last couple of years while laying down. I used to just get nervous and feel faint. This looks like it explains why.

My seizure like activity can be a mild petite mal ( just need to be quiet for a few minutes), shaking internally or full blown myoclonic movements. The latter two require Klonopin to get these to stop. I don't faint but I do have to go to the bathroom afterwards.

Is this just part of POTS ? I have a left bundle branch block too tho.

tx ... d

http://www.nymc.edu/...gal syncope.htm

http://www.dinet.org/NCS/ncs.htm

W

What are the symptoms of NCS?

Neurocardiogenic fainting usually occurs while standing. Emotional stress, stressful condition and pain may trigger an episode, especially among the young (Shah, Gupta & Lokhandwala, 2003). The onset may be abrupt or associated with warning symptoms such as fatigue, weakness, nausea, sweating, pallor, visual disturbances, abdominal discomfort, headache, pins-and-needles, lightheadedness or vertigo (Deering, 2003). Presyncopal patients may also complain of palpitations, vomiting, disorientation, and difficulty speaking clearly or coherently (Grubb & McMann, 2001, p. 60.). Other symptoms that may present before a faint include feeling either warm or cold, tremors, yawning and having a bluish/purple or red coloring to the skin (Alboni, Brignole, Menozzi, Raviele, Del Rosso, Dinelli, Solano & Bottoni, 2001).

During the faint "seizure-like" activity may occur (Grubb, Gerard & Roush, 1991). This convulsive activity is thought to be distinct from a seizure disorder.

Patients are sometimes symptomatic after a faint as well. Patients may complain of symptoms including nausea, clamminess, lightheadedness, headache and malaise (Deering, 2003). Patients may also experience vomiting, abdominal discomfort, weakness, tremors, cold or warm feelings and confusion (Alboni et al., 2001). Patients who experience frequent neurocardiogenic syncope may report symptoms between faints as well, such as chronic fatigue, headache, chest pain, exercise intolerance, heart "flip flops" and an inability to tolerate prolonged standing.

Me, too. I'm working on when and what meds to take. Wal-zyr, benadryl and now nsaids are a given.

I'm working on which h2s to take when.

I figured out a lot of my triggers before learning about mast cell disorders. I'd start with eliminating

common food intolerances like gluten, dairy, soy and corn. These are in most of our foods so we're

getting too much of these. Btw, even newspaper ink has soy in it.

I'm intolerant of all 4 so this made a huge

difference for me symptomwise. Later I discovered that my fibro pain only came back if I ate tomatoes

or bacon. Some nuts are a problem but not all. To this day, 7 years later, these foods still trigger whatever symptoms they did originally.

It took me several years to feel the full benefits of this but I'm also a celiac who appears to get ataxia and seizures from gluten.

I don't know why the low histamine diet that's recommended for mc disorders allows some of these..

Tc .. D

Interesting thread. Thanks.

So, instead of hypoperfusion in the brain, could it be that a brain chemical that gets altered that forces us to get light headed so we will lay down ? Something along the lines of whatever triggers our gag or cough reflexes ? There's

a med that stops the cough reflex but I can't remember what it is.

Is it possible this chemical is activated at the first sign of oi so we don't get hypoperfusion in our

brains ? But we will get hypoperfusion in other upper organs that are less sensitive to blood loss ?

Could this same chemical cause our other upper organs to partially shut down due to blood loss or lack

of circulating blood so they avoid damage ?

I vaguely remember a study a few years ago on this in ny where the patients doing the ttt

had emg wires inserted in their muscles to detect muscle "weakness" / function ? There were pictures

of the study.

Tc .. D