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Postby scorpion » Sun Apr 17, 2011 12:48 pm

mamaduck wrote:Hi all and thank you so much for your replies! This is such a scary time and it really helps to talk with others that understand the fear, the worry, the symptoms, etc... I'm sorry that I even had to look, but am thankful that I have found this little oasis on the net.
I am typing fast because on a scale of 1-10, today has been in the negatives. My toddler had to go to the ER this morning and has been admitted to the hospital with RSV. I am home from my MRI, grabbing stuff and heading back to the hospital to spend the next night or two.
I wanted to say that the I survived the MRI and am now in waiting mode to hear from my doctor on Monday or Tues. While in the machine, my buttocks and my legs started to go numb. I'm hoping for some kind of definitive answer. My conversation with the tech afterward went something like, "You did really well. Your doctor may have you schedule a follow-up appointment to discuss how these tests went." I'm sure that she says something like that to all the patients, but somehow I would have felt better if she'd have said something more to the effect of, "Your doctor will be in touch with you." The "follow-up appt" immediately made me think that she knows but can't say. Anyway, it's over. The symptoms are still here and getting stronger, so onward and forward I go. As do we all.
Have a great weekend everyone and thanks again for your words of encouragement.

Your story sounds so similar to mine. When my first MRI was completed I remember studying the techs face to see if he look concerned, surprised, etc. and when I was leaving he said something like " I will get these to your doctor". I thought "it must be a terminal brain tumor!" Four years later I am still kicking and still able to do almost everything I enjoy. Let us know how you make out!
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Postby mamaduck » Mon Apr 18, 2011 10:59 pm

jimmylegs wrote:[Effects of selenium supplement on acute lower respiratory tract infection caused by respiratory syncytial virus].
Liu X, Yin S, Li G.
An intervention study was conducted in 75 young children under one year hospitalized with pneumonia or bronchiolitis caused by respiratory syncytial virus (RSV) to evaluate therapeutic effectiveness of selenium (Se) supplement on acute respiratory lower tract infection caused by RSV with randomly controlled and double-masked method. Trial subjects were divided into two groups, one with 37 children in routine treatment and the other with 38 children in routine treatment plus Se supplement. The control group derived from 35 normal children during their physical check-up in the out-patient department. Sodium selenite was supplemented orally with 1 mg on the second day of hospitalization. Results showed that days needed for their relief of symptoms and signs were fewer in Se supplement group than that in controls and recovery in indicators of cell immune was better in the former than that in the latter. Levels of Se and glutathione peroxidase in plasma and white cells could be increased by Se supplement. It suggests that Se supplement can promote recovery from RSV infection

a daily maintenance dose of selenium would be 200mcg. usually you can get that in one pill. so it looks like they gave these kids was a one time dose of 5 pills or equivalent.

selenium kicks butt - selenium status predicts hiv-aids survival!

Very interesting and good to know! I wish I'd have seen this earlier ~ it probably would be better for her than tylenol with codeine! Where does one even get selenium let alone a kid friendly version?
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Postby mamaduck » Tue Apr 19, 2011 12:19 am

jimmylegs wrote:chin up christy we're here for you.

Thank you!
bluesky63 wrote:I just wrote a reply to jml that I hope you will read.

Read it - thanks for the suggestion! I tried going gluten-free (and caffeine-free and several other things) last summer. I was very successful with everything except for the gluten. That was really, really hard to stick with. Gluten has weaved its way into just about all my favorite foods, but I'm 100% willing to try it again.

scorpion wrote:Four years later I am still kicking and still able to do almost everything I enjoy. Let us know how you make out!

What an encouragement! I need to hear more stories like yours because my imagination is running away with not "happily-ever-after" outcomes.

So I met with my primary doctor today and my MRI (brain) was totally clear except for pressure on my sinuses. Whew. I was NOT expecting that! So it's good news, but the search for answers tarries on. My next stop is a neck MRI and then a visit to a neurologist on May 10th.
I'd love advice on things to talk to the neurologist about. I'm vibrating like nobody's business today. Feels like I'm going to bounce right out of bed once I finally get there. Of course this makes me feel like a head case because no one can feel these tremors that I feel so profoundly. I'll wrap my arms around my kids and it's just mom that they feel...not electric vibrating mom. I was so sure the MRI would come back differently ~ I was going numb all over the place on Saturday. Lost my behind for several hours and then it just kind of tingled in a funny way the rest of the day. The rest of me went numb like the whack-a-mole game where the mole jumps out of a different hole every 3 seconds. The top of my foot, the bottom of my foot, my thumb, my pinky, 3 fingers here, one toe, two toes...and on and on it went. I was a bonafide headcase by the time I went to bed that night. So now I hope the neck MRI will tell some tales. My sister is encouraging me to get a Lyme test. My mom is suggesting I get all my metal fillings removed. Another sister thinks we should test for mold. I feel like I'm chasing rainbows and my husband now thinks I'm just sleeping funny. :wink:
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Postby jimmylegs » Tue Apr 19, 2011 5:17 am

hi mama, re the selenium, if she likes brazil nuts, have her eat 2 a day.

here's a whole list of other food sources (brazil nuts are absent - presumably the folks at 'world's healthiest foods' are not nut fans) ... e=nutrient

also re gluten free.. you can either bust your butt to get rid of gluten, or ensure your diet contains enough zinc.

here is an example of a problematic study with some really questionable conclusions made ... f-1056.pdf

for example, the abstract states that in celiac children "Results: Serum Zinc was below the reference range in 68%." 68% of celiacs? or does that include the healthy controls? let's do the math:

zinc level in celiac subjects was 58.85 +/- 4.03. that's in ug/dl. so to get umol/L you have to multiply by 0.153. which means that none of the celiac patients cracked 10 umol/L. the closest they got was 9.62.

after gluten free diet they got up to 84.77±4.31 which is the 12-13 umol/L range, a far cry from the optimal 18 seen in multiple other studies.

healthy controls had a wider spread, ie 11-13 umol/L range before the diet and 12-14 umol/L range after. because of the overlap, the increase did not achieve statistical significance and hence the conclusion "Control group did not show any significant change in their trace mineral levels ."

BUT, it did increase. just not as much as the kids who started out way lower.

at any rate by my standards 100% of patients AND controls were well below optimal zinc. and the omission of gluten from the diet increased serum zinc in all groups. the effect was most pronounced in those with the lowest initial zinc levels.

i'd say increasing dietary sources of zinc would be pretty important, and ensuring gluten foods are not so dominant that zinc nutrition is impaired.

world's healthiest high zinc foods (edit: sorry i pasted the wrong link here originally): ... t&dbid=115
Last edited by jimmylegs on Thu Apr 21, 2011 7:35 am, edited 2 times in total.
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Postby mamaduck » Thu Apr 21, 2011 2:31 am

Thank you, Jimmylegs! I so appreciate all your time sharing these things. I don't know how you do it or how you keep it all straight, but thanks and if you haven't written a book yet, you should seriously think about it. :wink:
Thanks again!
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Postby jimmylegs » Thu Apr 21, 2011 6:16 am

i might write something some time mama, but i would want to publish something peer-reviewed first ... a thought for the future ... :D
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Postby bluesky63 » Thu Apr 21, 2011 7:25 am

jimmylegs you are so right -- research on celiac continues furiously, and many experts know that the gluten issues are just one small part of a huge puzzle. :-)

I had meant to add a couple of threads on some things we were discussing elsedwhere:

about ehlers-danlos

complex migraine
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