ana_22

cod liver oil. best kind to get is the fermented one

sue1234 did you have the caloric ear test?

just asking as all my ear tests were normal apart from this one

I have capsules of 1.5mg Im going to call the pharmacist tomorrow to see if it is ok to divide them in thirds, to start at 0.5mg. There is powder the capsule so I guess i would have to open them up and divide them, might be too difficult!

Lenna how long was he on it for and what dose did he start at?

What were his crash symptoms?

Just curious as I have this ready to start!

yes ive had a spect scan, it showed mild hypoperfusion. I saw a CFS DR after this and said it was a common finding in patients with CFS. He had seen much worse then my result though which was a little reassuring

hang on! its resolved pooling?

do you still get pooling? or is it milder now?

Hi,

I was quite thin too. I went from 130 pounds to 110 pounds. Now I am 127 pounds. I have managed to gain back almost everything I lost.

I stopped taking Florinef and the weight gain started gradually. I know thats so weird as its usually the opposite, you gain weight on florinef! hehehe

I also go to a holistic PCP.

All the foods you are eating he has told me NOT to eat - milk, pork, eggs, they are very allergenic. He basically recommends all meat BUT pork!!

No dairy, BUT butter (one tablespoon a day) is OK for the buteric acid.

This is what the diet basically is:

breakfast : gluten free bread with butter or gluten free minimal processed oats made with water/

lunch: piece of meat as big as your palm (free range organic chicken, beef or fish) and vegatables (there are some to avoid like corn)

dinner: same as lunch

there are certain snacks that you can have.

if you need more info let me know.

silly question ..... but are you standing while you are doing this?

i'm not sure if the person in the video is a member of dinet.

anyone else doing the dr. levine protocol?

hi reen,

i had the caloric test done at an Ear and Eye hospital. My neurologist ordered it as part of a vestibular work up.

basically they run hot air through your ear then cold air through your ear (for about a minute each). at the same time they have goggles on your eyes. so by the reaction of your eyes they do some calculations and can tell whether there is vestibular weakness.

I think most ENT dr's can perform this test too.

its meant to make you very dizzy but only for a short time, only the minutes during and after the test.

my ears are definitely involved. I had the caloric test (hot and cold air put through ears) and it showed a weakness of like 80%. So I had significant weakness, due to what? they don't know.

I will be reading these articles this weekend!

Thank you for posting this.

which test did you do to determine gluten sensitivity?

I thought this was interesting since i was negative for coeliac but wheat free def helps me:

http://www.theage.com.au/national/new-light-shed-on-gluten-intolerance-20110126-1a5e2.html

he wasn't really discussing the result thoroughly! he needed to make some calculations and then send the results to my neuro who will discuss them with me!

the sweat test was quite easy as they just placed electrodes on my skin, one on my arm and one on my leg. i thought i didn't sweat in places, and this confirmed it. though i know the bottom of my feet sweat, my stomach and chest sweat and a little bit of my forehead does.

have the supplements helped with sweating for you?

yeah i think the dizziness is lack of blood, but i tested for weak vestibular too, so its a mix. i've had a spect scan which can measure some aspect of blood (hypoperfusion) in the brain but you are laying down for it so its not too helpful!

I recently had an autonomic function test (Valsalva, tilt, sweat test). I haven't got the results yet but i was told that I don't sweat.

Anyway, before I did the Valsalva the DR said it would make me feel like my head was going to blow off.

It felt a little uncomfortable but I actually felt better the minutes after the Valsalva and was able to do the test 3 or 4 times.

I have the chronic feeling of dizziness / light head all the time and this made it go away (even if it was only for a few minutes!)

can anyone explain why?

I was just curious as the Dr said it would make me feel bad, though I actually felt betterish. I told him and he just laughed!

thanks

thought i would ask if anyone has tried this. i have relatives with who it has helped that have had cancer and other issues.

http://www.herbs2000.com/herbs/herbs_mistletoe.htm

Actually, both kinds of mistletoe contain toxic proteins that are very similar in their chemical composition. These are designated phoratoxin when isolated from Phoradendron species and viscotoxins when obtained from various subspecies of Viscum album. Contrary to the folkloric reputation of the respective plants containing them, phoratoxin and the viscotoxins produced similar effects when injected into test animals. These included hypotension, slowing and weakening of the heartbeat, and constriction of the blood vessels in the skin and skeletal muscles. However, it must be noted that the effects of these toxins following oral administration in human beings have not been studie

it can cause constriction of blood vessels but lower BP?

how much MORE were you able to do with miodrine?

maybe you just over did it too fast and your body did not know how to cope....maybe you should pace your increase in activity so your body can get used to it?

have you tried a small dose of klonoplin to dull your senses a little?

how can you be tested for this?

is an ultrasound of the renal artery sufficient? just wondering as i have had one of these done already

thanks!

well before I got sick my BP was 90/60 and I felt fine! like super great! i was 27

now my BP is never that low, unless im laying down. now standing is 95/60 - 125/80 anywhere between that but usually 105/80 ish.

Im sure its about how much BP is in your head or how much blood is getting to your brain and that cant be measured using a BP machine.

ALSO im from Australia, but i was watching the news during the last US elections and Im sure they were talking about Pres Obamas health and he had his BP measured in front of the press at some Dr's office and it was 90/60. so surely that must be normal. They just said something about him being super relaxed before the election.

ohHHH the MRI is in the TUBE!!! I hate being in the confined tube and thought my last head MRI (i've had 3) would be my last!!! Thank goodness for that mirror they have you look in to give you the illusion of space! oh and valium....

Oh well.

I see my endo in 2 weeks and im not sure when the MRI is scheduled, still waiting on the letter from the hospital, Ill find out soon enough!

thanks! hmmmm it will be interesting to see if anything shows up on the MRI. I've had a brain MRi which showed nothing, but this one will be specifically looking at the pituitary.

Did your friend have surgery or the meds to decrease the mass?

Sorry to rehash this old post!

recently i've tested high for prolactin and cortisol (cortisol on a number of times) i did the stim test and my starting cortisol was actually too high!!! though it didnt double when injected, but thats another story!

Nina I am interested about your friend with the pit tumor....what other symptoms did she have?

Im seeing my endo in 2 1/2 weeks, and getting a pit MRI soon.

yeah you can grow it, theres kits you can buy online.

though it is expensive cos you need to get the machine that juices it.

im not sure whether you can just eat it !!!

i strarted drinking a powdered form and noticed some good effects