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maggee

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Everything posted by maggee

  1. hi Alicia, it sure gave me severe depression, and--- for the one and only time in my life---made me have suicidal thoughts. was HORRIFIC! -maggee-
  2. nikki, i use transdermal magnesium oil or gel better utilized by bod, so they say ancient minerals brand--say is best--but expensive. i bought www.healthandwisdom.com brand believe its same thing, but much cheaper can read alot about it there also. does calm my system....great for adrenals, and much more also, i drink a hot drink--called BalanCe at www.vrp.com has high vit c--gr8 mag--gr8 calcium...and---makes you sleepy........@ bed...or i use during day if i am overly stressed--helps! common overview--we are all mag deficient! getting mag into bods---will improve alot of things.....:0) read, hun.......:0) write me privately if i can be of further assistance paljoey@wowway.com -maggee-
  3. hi Linda, i have belonged to a yahoo group---for thyroid-iodine issues for years. learned alot--just reading.... http://health.groups.yahoo.com/group/iodine/ ***try above link to join...... then try this for basic info: http://health.groups.yahoo.com/group/iodine/links the thyroid med of choice was ARMOUR [natural from pigs] not available in US anymore-- unless made by compound phamacist....-but now---replaced by "NATURETHROID" i remember one lady getting armour from a canadian pharmacy callled UNIVERSAL DRUG [prescription needed, i believe.....] SOME PEOPLE need both iodine supplementation--with natural thyroid hormone. some just need to make the journey of iodine supplementation. if you are in michigan, the recommended top-notch doctor to see is Dr. David Brownstein. his books are great also. [google him....] do know it is reiterated--that one must regulate the adrenals...before regulating the thyroid, is feasible....?????? most of us are iodine deficient---as well as magnesium deficient---so it has been said over and over and over... magnesium oil--used in baths--foot baths--or placed on skin for transdermal===is implicated to help heal the adrenals---and much more! another site to read is www.stopthethyroidmadness.com [i think that is it???????????} i would--if i were you---find a doc on the iodine/thyroid group list.....and start there. if you are in arizona....a Dr. Mark Starr is phenomenal also. you can listen to interviews w/ him... http://naturalsolutionsradio.com/node/25979 ...and he has put out a great book also. all i know--is most people have trouble w/ synthetic hormones===which only replace--or try to replace===1 of 4 thyroid hormones. very complicated integrated circle===thyroid, adrenals, magnesium deficiency,iodine deficiency. hope this helps you get on a better journey. we have so many battles --just w/ dysautonomia, but needlesstosay----any other insufficiencies that can be rectified must/would increase our functionality and help us feel better???????? blessings, Linda -maggee-
  4. niki, too cute---your emoticon's -- describing US LOL! BUT- so ughh-ly -- and 'tis the truth for the 'day in the life ' of a dysautonomic! am in & out of UGH'IN every day, and thankfully--some days less than others :0) i especially UGH over doc's hate to go to any anymore. don't know which is the worst===the physical part of this syndrome to endure??...or the emotional beating we take from doc's and from people due to our inability to plan anything in life..??????? hey! don't ask me to that wedding in April--k???????? i don't know if i can take a bath TODAY...or if i can stand in the next hour---let alone, wtheck i will be like on April something, 2010...! don't want to reply yes...and possibly waste your money on that wedding dinner just being respectful of ya---and only WISH I COULD JUST CHECK 'YES' on that RSVP....! if ya only knew how blissful that would be for me.............. if, only...... pssstttttt!-->>>inadequacy that is misunderstood..reallyyyyy hurts , huh? UGH--YESSSSSSSSSSSS! KK..am done a'rantin'.....lol! let me know if the smaller doses help, niki! sure do hope so i going to try to have an "UN-UGH" day--and go for the bath and the grocery store.. !!! wishing you the same, today, Niki -ugh||unugh'in Maggee-
  5. hi niki, don't know your dose or symptoms, but i have been on it for quite awhile. but---i can only tolerate 5 mg doses...3-4 times per day. so--small increment doses---works ok for me. is the only betablocker i can tolerate perhaps this may help...??? good luck , niki....! UGH!--HUH??? feel better soon--HOPE!! -maggee-
  6. dani, antibiotics===>i'm just dang allergic to them---and most meds...... fugly-ugly! lol! i got that gene mutation--that causes me to not metabolize drugs properly. had the bloodwork done...as my whole life filled w/ med reactions. so, for POTS--i am down to using propanolol--in tiny doses..and xanax. will not try anoher ssri..or anything, right now --anyways... had enough! kk--let me know what you find out--and if that stuff happs to work for you believe me--it sounds like the answer to sinus infection healing==naturally....! good luck, hun...will be prayin for ya -maggee-
  7. HI Dani & sunburnt i just came across this in another group i belong to: for sinus infections---and prevention, thereof---there is a solution called ARGYROL, that you do a sinus wash with---like with a nettie pot---i think? said, also--antibiotics--worse thing to do--for sinus infections--and the good Lord knows--we hate them anyways. haven't done my homework on this--so please google it. the source it came from seemed very knowledgable...and uses this method on regular basis--and has no more sinus infections. think it's based on silver content...and is safe.....and i do know silver is one of the most natural cleansing materials that God put on this earth. know , in early history--army troops carried their water in silver containers--as it kept it/made it PURE. ANYWAYS, DO HOPE THIS HELPS--AND I pray something helps you SOON! best regards, Pam
  8. hi endure, was going thru my email last nite---a new years cleaning...lol...and came upon this for you. it was posted on 10/5/09. interesting--as it explains diff between medical marijuana---and street marijuana.....! hope this helps--as i sure got educated. best regards, Pam ======= Hey guys, I wanted to tell you about my trip to the medical marijuana doctor because I thought it was cute/interesting and I thought some of you might be curious about it. So, to get a license you have to bring in your medical records, and I did and let them photocopy a couple of important ones from Stanford that sort of summarized my issues. The doctor at the office was seeing other patients while I was filling in my medical background and reasons for smoking medicinally. He saw them very quickly, very formally, and the appointments all went by fast. So when I handed my paperwork in, I assumed I'd be seen soon. I was fine with waiting though---there were older people and some housewives in the waiting room and it reminded me a lot of a chiropractor's waiting room with brochures on the walls about herbs and alternative medicine. About 20 minutes went by after the receptionist gave him my records, and he didn't see any other patients in the waiting room during this time, which was funny because the appointments were only like 5-10 minutes long before. Then he came out, and called my name, and shook my hand all nervously, not making any eye contact. I sat down in his office and he started talking very quickly and somewhat nervously, still not able to look at me while he was fumbling through my paperwork. He was telling me that he's never seen someone with this type of condition and that he thought I was very brave for finding doctors to help me and for finding my own methods of treatment. He thought it was really tragic that there was no immediate cure and again, commended me on my strength for working and continuing on with life despite my condition. He also started to talk about some of the treatments of Dysautonomia and some of the research being done at Mayo Clinic. I was shocked....did he look up all this info before my appointment? He must've been doing that while the 20 minutes passed. I told him that my medical records had been submitted to them a while ago for research purposes and that I really hope they continue to study all the mechanisms and causes of Dysautonomia because there is such a lack of information out there about it. He started praising me again, and telling me I'm going to be a hero someday because I'll win someone a nobel prize. Haha. He was such a sweet guy, and so nervous to talk to someone with a REAL condition. He probably gets so many borderline cases day by day where he has to question whether or not it's really a need. It's pretty easy to get a prescription though so I assume they're given out even without need, but at least he can feel good about MY case. He was SO happy to give me my prescription, and he was doing a very good job at making me feel like he was a real, professional doctor and knew a lot about the medicinal qualities of marijuana. He told me that people with POTS specifically should stay away from Sativas, which is the more "fun" strain of pot (the upper, the one that makes you laugh and have fun and feel motivated). He said that it gives normal people tachycardia and dizziness upon standing because it's a stimulant and acts on the nervous system in a way that would definitely exacerbate our symptoms. He told me I should just stick to mellow Indicas because they'll slow down the system more and give me a sedative effect that might sooth the tachycardia I normally get, and also they're supposed to stimulate the digestive system in a way that can help with constipation or slow bowel. He said I can take pot in pill form to make that work even better (and I've actually tried this, it works...but feels verrry weird in my insides lol like a numbness that flows through my tract...great for ulcers but it caused a little bit of weird burping for me). He also informed me that marijuana has a tendency to raise blood pressure which is great for my low blood pressure problem, and that a vaporizer may help better with that as opposed to burning anything. He said so much more, but it's definitely all online if you guys are curious about all the healing effects in studies. There are so many. Even just the ACT of smoking helps with anxiety because of the breathing in and out and of course the effect of the weed. I think it's most important though to point out that this doctor completely confirmed my theory that certain strains of pot are horrible for us and others are more medicinal. Cheap weed found on streets are Sativas, Indicas are more temperamental and harder to grow, so they cost more and a lot of dealers don't really bother with them. My suspicion was definitely correct. I tried smoking for years before recently, and I thought I couldn't handle pot, but as soon as I started experimenting with different kinds of medical marjiuana, my life changed. I now have a sleeping aid that works, an anti-nausea drug that doesn't give my organs permanent damage, and an anti-depressant that works right away with the only side-effect of being high, which isn't all that bad once you get used to it after many months of tolerance-training. I didn't always like Indicas though, they made me feel like I couldn't think...couldn't focus on anything. Like horrible brain fog x 1000. But after a year of smoking medicinally, it's VERY different on me. I don't get as high, but the medical effects are still there. Smoking just makes me feel "better" if I'm feeling icky, and I don't really need to get high anymore. Actually I try not to get high at all, which is easy because my tolerance is pretty strong these days. It's great =) Anyway, I hope you guys found my little adventure interesting! I haven't been to the dispensary by myself yet, hopefully they are just as informative and professional as this doctor I saw. I'm glad I did it! It's just one more step for me towards being independent (as opposed to being reliant on my ex). ---------------------------------------------------------------------- The topic can be found here: http://dinet.ipbhost.com/index.php?showtopic=13501
  9. hi Lina, i take a great product of sublingual b-12, folic acid, & b-6----called BIOTICS RESEARCH B12 -2000 my dad had restless legs years ago--and we were told to give him folic acid--which worked. also learned--don't take more than 800 mcg per day. i been on this product for years, as, helps keep homocystine level in blood down---which prevents heart attacks and strokes. anyways--place to buy is http://store.agoodvitamin.com/bireb160lo.html can't find in health food stores---just some alternative med docs handle it. anyways--works for me for the lregs---and plus--great absorbtion of b-12, b-6. hope this helps! God bless---wishing you good rest realll soon! -pam-
  10. HI AGAIN,CAT.... is it feasible to check w/pharmacy---and their records---to access what generic you were on before???? they should have the records..... i think there may be a chance---your pharmacy could order it for you--or --are you saying they told you--it isn't made anymore?? believe me--needlesstosay--i am intolerant of most meds.....so, try the MYLAN --IF you can request it..... gl, hun... let me know how you're faring -pam-
  11. hi cat:) i take propanolol regular....only comes in generic--as you apparently know. anyways, we have CVS drugstore chain here, and i get MYLAN generic from them---and have no problems. i take small increments--bout 5 mg...2-3 times per day. never tried TEVA hope this helps! best regards, Pam
  12. oopssss> always refrigerate omega 3's and vitamin E's .......and take them w/ food--not liquid. try to isolate from liquid for as long as you can, which in my case...is at best--a 1/2 hour--due to consumption of H2O all day
  13. in my experience, i have found one needs to be wary of the brand you buy....needlesstosay & unfortunately, ever so true w/supplements, as you all have experienced in the dysautonomia world of intolerance and heightened sensitivity. i was told Carlson...was the best....but found even that brand...made me have nausea. wasn't until i came off them for 2 months--and a recommended brand called INNATE CHOICE....OMEGA SUFFICIENCY , made by innate choice, inc., Victoria,BC, Canada www.innatechoice.com ---------came into my life---and it does not bother me :0) i also have read that omega 3's need to find vitamin E in the body---to be effective, and not have negative effects. has something to do w/ production of prostagladins [ i remember there are good and bad prostagladins.... ]--is all i remember. so, after much reading---years ago--it was indicated that we need tocotrienols form of vitamin E. after much trial & error --I now take SOURCE NATURALS "TOCOTRIENOLS". take one w/my omega 3's per day. they are expensive, but great price at www.vitacost.com hope this helps God's blessings to all of you! -Pam-
  14. hi! i have taken a probiotic for 10 years plus....called ' floragen 3' tis available w/ free shipping @ www.zerbos.com i also take colostrum, only from new zealand. available @ https://www.nutri-health.com/probiotics/pc/viewprd.asp?idcategory=5&idproduct=21 these 2 products have immensely helped keep my stomach-bowel--digestion in gr8 shape since getting POTS...thank the Lord good luck , hun..... hope this helps...or something does soon! best regards, Pam
  15. hi! i use to take it, but can't now---as it is contraindicated w/beta blocker inderal[propanolol ]....... not sure if same w/ all beta blockers...????? was gr8 for me--as i was always careful to bury in food....and its anti-inflammatory properties, and help w/ pain-seemed awesome to me-and agreed w/ me. sure do miss it. arghhhhhhhhhhh! of course--doc's didn't tell me to come off it--but it made me feel like my head gonna blow off when i started taking the inderal w/it. so--there it was--in the med contraindications.....>not to take NSAIDS w/ inderal. know the mix of the 2 drugs made my BP sore...and i am normally running the usual LOw---BP---TRYING TO KEEP IT FROM PLUMMETTING W/ salt....compression hose..h20.......ETC....... just thought perhaps....any of this may apply to you ??--to help.... best regards to you & all, Pam
  16. HI Rene, just my 2 cents..... i tried many bb's..and propanolol/inderal...in small doses [2.5-5mg]...a few times a day...finally works for me---along with the ballancing of BP with himalayan salt/pure water, and thigh high compression hose. salt and BB-i do prn....... quite a job--but WHAT ISN'T FOR US,,,HUH?-UGH! what i wanted to tell you--is my BP will rise sometimes i think due to what i eat---and sometimes i don't know why. yet--one thing i do know that interacts with propanolol---- are NSAIDS---LIKE MOTRIN...ETC. i was on motrin for years...and now==no-can-do--due to the BB. i believe the same to be true for antacids...with aluminum__hydroxide?????? in it--so--i use wee sips of ginger ale, when i get stomach issues. i also have negated sugar--refined--from my diet. do eat fruit...minimally , with some protein intake tho'. anyhoooooo--the motrin thing--really WAS THE THING I NOTICED--SENT MY BP SORING--WITH THE BB INTAKE. JUST THOUGHT I'D LET YOU KNOW, IN CASE THE NSAID interaction...applies in your life. am so sorry for the crap you're enduring... are we sick of doctors----or what????? we all have about had IT-WITH 99% OF THEM!!!!!!!!!!!! IN FACT--they make me/us sicker--i do believe................. sorry..the anger trip arising here...for all of us! gl hun,will be praying for you! best regards, Pam [maggee]
  17. maxine... maggee agin bowel prob's....info/products...may help you!!!!!>>>> new zealand colostrum https://www.nutri-health.com/probiotics/pc/...sp?idcategory=5 [made by metafoods]...only use kind from new zealand. floragen 3 www.zerbos.com free shipping great probiotic...to balance bacteria in bowel been on both for years--have no sensitivity issues w/either..and my bowels are great--i know from using these 2 products. suggesting these 2 brands, as they are good...and know there are many other brands...but these 2--work for me! got my mom on these after her having horrific bowel prob's for 40 years--and now she has none.... good luck if you try them... we all pulling for you,hun! ((hugs))).............maggee
  18. hi maxine.... oh my....so sick on top of being sick... so sorry for loss of your brother--my condolences to you and all:0( just wanted to write a wee note---in regard to a product i stumbled upon---that perhaps may help!! buy it OTC-called EMETROL WHEN YA GOT FLU AFFECTING STOMACH--OR JUST DOWNRIGHT NAUSEA--- ---this is only thing that everrrrrrrrrr helped me.......... contains no drugs.......and you take a swig every 15 mins til you feel better. has been a lifesaver to me so, wanted to pass on---as an option for you and all. btw==it's a liquid----sugary-and for life of me--i do not know why it helps--better than anything....and nothing else does help! good luck,hun.i be praying for you and family! best regards, pam [maggee]
  19. hi Karen, i, also, tried a multitude of BB's.......and can only tolerate INDERAL [GENERIC NAME==PROPANOLOL ]. comes in 10 mg dose---so what i do--is take 1/2 pill---which would be 5 mg at a time----about 4 times over a 24 hr. period. inderal is a "non-selective" beta blocker...and most are "selective". have to do resourcing as to what the diff is, as i do not know off top of my head....:0( but, perhaps--it may work for her also--as i am the most medication intolerant person....i have ever known---and med-intolerance is usually a BIG GIMME WITH DYSAUTONOMIA. hope this helps...in some way....and hope the inderal becomes an answer for her. tell her to just go slow with it, as stated above---just my recommendation, as that is the only way i can tolerate it--and it serves me well. give her my best regards--i will pray for her today. bless you for being there/here for her also!!!!! sincerely, pam [maggee on dinet]
  20. hi Joe, so sorry for all the "what the heck is this?" -- symptoms you're going through. i read you are taking florinef...and, if you are not aware--florinef will deplete you of potassium and magnesium....and i believe--calcium also.. but--potassium is CRUCIAL, as magnesium is crucial also---and both have helped me immensely. from my own experience--as i just 'salt-load'...as couldn't tolerate florinef---even salt loading--requires me to do potassium supplementation, and, i take low doses of calcium-magnesium also....throughout the day. i get prescription potassium...extended release, and i take 10 MEQ per day. 10 MEQ====750 mg potassium. not a high dose...but sure does cover the gap...especially, if I'm not eating good enough. you can email me privately---if you want the brand of the extended release potassium...prescription--i get. i do not mess with over the counter potassium, and am resourceful and investigative about the calcium-magnesium...i buy...also. btw==no doc---ever told me to supplement with potassium--magnesium..calcium...when i was on florinef. arghhhhhhhhhhhhhhhh and--at one time i was on hydrocortisone--another steroid.....for 11 weeks....and NOT TOLD THEN EITHER. I WAS ALMOST ''TOAST'...that time round...as i was in severe hypokalemia----[ potassium deficiency ]. thank the Lord for the internet, as info came to me in time....regarding steroids/potassium-magnesium-calcium==depletion==that comes w/ steroid use. anyways, perhaps this will help you investigate this option, and help you...??/ hope so, JOe! thoughts and prayers are with you.. hoping things improve soon for you! Maggee
  21. hi! since you got 'vitamins' in iv....perhaps you are sensitive to one.....??? i know i am sensitive to alot of vit's.... i tried a b-12 shot once..... almost couldn't drive home, and felt sick for hours. of course--the doc said---'it couldn't be the b-12!!!!'...... arghhhhhhhh!!!!!! know it was.... just my 2 cents best regards, maggee
  22. hi gwen.... just a quickie...to say---i think your "blog overview".....of dysautonomia....is awesome...!!!! nice work,hun!!!! thx to Michelle, also!!...for sharing the 'live-chat' from cleveland clinic. i was somewhat disappointed in it, but--hey---it's a beginning.....or was possibly of some help for someone out there.... ....which is all that matters! best regards to all.... maggee
  23. hi Lauren... so sorry for what you're enduring...if we want to call it 'enduring'..?? oh myyyyy....i don't know what to call it--anymore!!!! anyways,a quick FYI, as I just saw this yesterday...a post, in case you missed it regarding Lyrica: DSM3KIDZ has just posted a new topic entitled "Lyrica Causing Rapid Hr" in forum "Dysautonomia Discussion". ---------------------------------------------------------------------- I've been on 75 mg of Lyrica for about 4 days and my hr has increased alot. 95 while sitting to 135 while standing. My normal is 80 sitting 105 standing. Is this just a side effect that will go away? Has anyone else experienced this? I'm suppose to addd another 75 next week but I'm not sure. Any suggestions? ===================================================================== LOIS...>>>got your message....ty!!....will write as soon as i can.... best regards to all. Maggee
  24. hi! i am on BB inderal........ i was also taking MOtrin...a NSAID......which apparently makes BP GO UP.......AND MADE MINE SPIKE TOO HIGH WHEN TAKING IT W/THE bb-inderal. bottom line----i came off the motrin/nsaid.......and feel so much better===and NO MORE HIGH BP SPIKING!!!!! on all BB's i've tried===nsaid's====are written under the medication interaction section.....on med review from pharmacy. perhaps this pertains to you, and can help???? am so glad i figured it out, as NEVER HAD HIGH BP before......[arghhhhhh]]]]]] ((((hugs))))))) maggee
  25. hi tammy, i've worn them for years......and CAN'T STAND IT WITHOUT THEM! i tried them all....and SIGAVARIUS BRAND===THIGH HIGH---ARE THE BEST---AND MOST COMFORTABLE. i am 5'4".....and wear a 'short'.....and my compression is 30-40hg. hope this helps...and i also wear them year round. you can put them in washer...but air dry...btw... (((hugs)))) maggee
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