Sophia3

Wareagle, cool the sublings work for you. That's the great thing about this board is we learn about ALL avenues of choice (even if we do have to scream at docs to allow us do do things on our own, but my ex CFS doc let me have the script for B12 & they never even showed me how to do it! lol) but he knew I was from a medically oriented family and if I needed help I would get it...this was 18 years ago? I had had allergy shots years before in early 80s (something you should NEVER give yourself alone in case you have a reaction, but if a doc/medical person is in the fam, it worked and you owned adrenalin for reaction!) but nowadays I don't do allergy shots, they never worked but went away on old fashioned antidepressant. after three days (sinequan!! I think) but B12 safe....and so many options! even a patch but I could never do patches due to adhesive itching..but more power to those that can use them. :-)

thanks April. Found the QGel 30mg close to home and cheaper than online Plus Shipping. thanks for the answer. Didn't even see the liquid 500ml (SMH=Smackin my head)

Wareagle not sure WHY a dr would say b12 shot is more complicated than insulin. NOT true at all. I use huge 21 gauge needles to give myself shot in the hip for years (and with smaller needles, gave on the thigh)I sit down, grab a piece of flesh on upper hip, twist a bit to do this, and inject. The end. Easy. Within inch of where the doctors nurses gave it to me YEARS ago. I still use big needles because I used to mix antivirals with B12 & got used to the long needles. & get them by the box of 100 which is just a couple bucks more than 10 syringes. Plus my eyes are bad I would never see a smaller needle!! I don't have that much extra flesh so need to be able to SEE what I am grabbing & the needle. But b12 shots are VERY safe to give yourself so don't want folks to be scared off. Been doing it off and on since 1992. I know many that take them and some vegan friends that are older and don't absorb the oral form. The sublingual is not always well absorbed either. Very complicated to explain. Bottom line, take what works for YOU peeps..on and BEWARE the sublingual version often has manitol or that other sugar substitute ending in -ose or tol. Can cause gas & diarrhea. Same thing that's in sugarless gum...so if your insides are sensitive, P.S. a cut and paste from a site on How to self inject B12. Hope this helps..and no this wasn't written by me!! "I self inject every 2 weeks and have been since 1995 and sometimes my husband will do the arms so I can give the thighs a rest. I've had no problem getting the syringes at the pharmacy and the nurse showed hubby how to do it one time and he has no problem doing it for me. The nasal stuff didn't keep my B12 up so I had to go back on the injections after a month, but it may work for you if you can't do the self inject. I'm surprised or rather not actually that your Dr said you'd have to get a teaching nurse to show you, that's idiotic. It doesn't take a rocket scientist to give injections to yourself or anyone else, I did it all the time as a nurse and it was nothing. Of course if you start giving yourself injections then they won't get the office call money so tell them to have his nurse show you how the next time you need one and then all he has to do is write the prescription for the solution and syringes as a standing order, once a year I need to update the prescription and that's all. They're just trying to keep you for the office call money. Once you get it you may feel apprehensive about sticking yourself with a needle for the first few times but after awhile it will be fine." p.p.s. this link easily explains HOW to give urself injections only I do not put alcohol on ME. burns & I am clean. I do use it on top of the B12 bottle where needle goes in. I rub the area after the shot but not with alcohol. Sometimes if cold, the B12 will stay in a small bump, but will dissapate. I give 3ccs so that's a lot. It's WONDERFUL not being dependent on a doctor for this and to know when the stick is coming into your body with controlling it. My nephew once called me on the phone to give his wife a B12 shot as they were never, LOL. but it was fine. http://www.ehow.com/how_4600517_give-b-injection.html

The testing for this mito stuff is ENDLESS and I had a boatload of unusual tests for mito initial blood work...I remember I was low in CoQ10 but when I took it, WORSENED my pre-existing insomnia. However aside from CoQ if you are low, and Carnitine (mine was ok) there isn't a lot that can fix mito in adults, so we didn't investigate more. My doc just said as tired as I am and as long as I've been sick, I could easily have this mito so we tried CoQ10. I took 100mg Solaray brang. AprilMarie WOW, the prices are good on epic4health...then I checked the shipping costs. $6.00 on a one $9. PRODUCT? They have a really low dose of CoQ I might order. Only 15mg. What dose to you buy? Thanks **Edit, found good price on this Acetyl L-Carnitine, anybody tried that? **

Angela I don't even know what to say at this point...you must feel helpless...and mad at the "top hospital"...sigh ((((((Hugs)))))))

kayjay For the price of one doctor visit for shot, you could get several scrips of the stuff! Practice giving shots and using syringe on orange. For some of us and our weird ways, be impossible to tell if ONE shot is helping or not. I seem to either have a weird body or weird suppressed "Placebo" effect after the fact. I swear a med/vitamin is helping, then after a few times it no longer does. MANY of us have experienced that..thus I don't like to "give a full report" on a new med/vitamin supplement until I've been on it for weeks. CynicalSophia

Oral B12 is often waste of money, especially in we aging folks due to the inability to produce the write digestive enzymes & the intrinsic factor issue. So ORAL B12 CAN be useless for some (unless you are blessed with perfect acid balance in your stomach ) Injection B12 is safe, relatively inexpensive and doesn't not hurt ANYTHING. It's water soluble so you pee it out if you have too much. If you are LACKING in it you need b12 injections and other vitamins taken orally help it all to work better. Many many years ago, I took MultB injections, B12 & Vita C shot together. (Came in figure 8 shaped bottle where you pulled a plunger to mix dried part with liquid) It had to be used in 14 days. This was more expensive and burned like the dickens due to the Ascorbic acid in the C. But it often helped me immensely but I never used it all up. IIRC it helped more than B12 but I am going back 18 years so don't quote me on that.

B 12 can help a lot. ESPECIALLY when you know your levels are low. Oral form not helpful. Learn to give yourself shots (Seems creepy at first but you get used to it) No longer helps my fatigue much but I have other issues going on. Good luck and let us know how the B12 works for you. If you are low it needs to be replenished.

well sue, I kinda knew the story, ..just didn't want to put NDRF on blast! but it's NOT a professional way to run a forum for those that depended on it. However there was a mass exodus last year but I've NO idea where folks went unless it was here or an old yahoo group (hate yahoo sites) Plus not answering emails..are you kidding me? they should at LEAST put up notice MB discontinued. I know a year or so ago when there was trouble they were thinking of doing away with the support forum.

NDRF has been shut down for a month (message boards) I don't know what their deal is (rarely go there) but don't count on that site for anything. I emailed them weeks ago and never got a response?! some people set up their own chat sites but I can't use them. Folks go crazy & like to use FANCY sized/colored fonts and they give me vertigo. (Yellow, pink, fonts and tiny or over sized things with moving emoticons...ugh) I need same sized fonts and dark colors to read on a moving board. Just too dizzying for my brainstem issues.

sue never heard of Medical food. What is G2???????????

Always most difficult to function here, too...after 19 years it's worsened but you learn short cuts..and coping. Stinks though. I am glad you are having a good day....wonderful break for us.

I've had this 18 years..you learn to live with it...I fall asleep watching benign tv/or shows on DVD which helps with insomnia & masking the tinnitus. Some days its MUCH LOUDER than others....sometimes it wakes me up at night. No cure but lots of scams to claim there is one on radio! Don't we wish.

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WOW I never think to check this CHIT CHAT board (REALLY wish it was blended with the main one) I had no idea you had gone back to the hospital. I am with you I would want ANSWERS not just seeing a pain specialist. Hugs and prayers to you Angela !

Cat Lady I could NOT remember a blog last week I wanted to tell you about for GF foods and pictures (to inspire you and let you know this eating can be fun!) http://glutenfreegoddess.blogspot.com/2006...enchiladas.html This is for enchiladas but the entire blog is pretty cool. Here is the main page in case you or anybody else is interested. http://glutenfreegoddess.blogspot.com/ And here she explains HOW to go GLUTEN FREE. her pictures are amazing.

Believer PLEASE re post your link. It did not work for me. Thanks ***EDITED*** never mind, I took off the ) thingie and it worked

Delphic I do NOT know where folks get the idea that GLUTEN FREE is low carb. it is NOT. one slice of some GF breads is higher than in normal wheat flour? GF is not a low calorie or low carb diet anything. It is free of WHEAT! INTERESTING about your barley or malt sensitivity. I tried a barley malt sweetener 25 years ago that caused problems..and gluten 'meat patties' in the vegetarian section always gave me belly aches. Thus I tried GF diets a couple of times. PLEASE NOTE! You can be sensitive to wheat or have a wheat intolerance. MUCH different than Celiac. My neices beau of 15 years only found out he had Celiac 6 years ago when siblings were dx. He NEVER goes to doctors but had gut issues and stayed underweight. He went GF and never had gut issues again and is of normal weight. He is in his late 40s. I never had the gut issues, just normal GI changes when I had my sick periods before hysterectomy. GF you can still have comfort foods..potatoes, rice, rice noodles or the tinkyada pastas for spaghetti or lasagna as mentioned. My kroger has the GF cake mixes but a box is 4.99 and I doubt that is a 8x13 pan but did not have on my reading glasses to check. My kroger (Grocery store) also has a GLUTEN FREE section of limited snacks...crackers, breads, cookies. Also most candy is gluten free, well at least many chocolates are. Here is a link and it has a PDF of lots of candy and snacks. Normal name brand stuff we are all familiar with, too. http://www.celiaccentral.org/News/Celiac-N...61/vobId__1765/

Didn't take the poll yet, Just my third day on Florinef. half of a .1 pill. Tried it once 11 yrs ago and it just gave me headaches and I still peed way too much. I finally went to DDAVP as needed. In recent months or year my fatigue has gone WAY downhill. I had a hysterectomy a couple years ago (STILL have ovaries, did not have oopherectomy) and I am not in menopause or anything. My endo keeps testing FSH and other hormones. though those can change on people. we are trying it again as I am too FATIGUED...feel deflated, dehydrated all the time. Exercise has not helped. This time I have weird chest pain. I have sore breasts often due to fibrocystic junk..so when I have this chest pain, I touch my chest and it's worse..so dunno if it's coincidence of half of a .1 pill of Florinef. What kind of chest pain did you guys have? Anyway, my doctor knows I am sensitive and I can take it daily or alternating days or every third day. ALSO I notice my tongue tastes salty?? But I have cotton mouth issues so who knows. I am cutting back on salt and we drew blood work at the doctors office on Thursday but I have not heard back. Electrolytes and thyroid again. I need to be on this a couple of weeks to decide.

Just a note...Gluten free foods have PLENTY of carbs...just not WHEAT FLOUR based, but their foods are not low carb. Just different type.

Oh and if you like peanut butter cookies here is one. NO FLOUR 1 cup sugar 1 cup peanut butter 1 egg I read up on this recipe lately and decided to try it with one addition. 1/2 tsp baking soda. I read these made the cookies lighter and I did not want mine to turn out like hockey pucks. Smooth with forks and sprinkle with sugar. bake at 350. To be honest I am not a huge PB cookie fan but these were great. I did not miss the flour. I would've like to have added chocolate chips but had none in the house. If on gluten free diet I would make these and make a semi sweet chocolate frosting. WHY am I putting this hear? It's GLUTEN FREE, quick and easy and ORTHOSTATIC FRIENDLY or sit on a bar stool or chair. If you KNOW there CAN be easy options to baked goods, it can make things less scary. To be honest, I did not mess bread that much except for---Pizza! My sister was gonna make the pizza crust recipe (after I made a simple easy one that was like nasty biscuit dough texture--fine for biscuits!) but I stopped eating this way...the Pizza crust calls for like 14 ingredients and seemed labor intensive. Check with GF bakeries in ur area. Shipping can be outrageous these days but for a good pizza, just treating yourself a few times a year to know you can "still eat it" is psychologically helpful. Tachy's suggestion for rice noodles is good but I don't think I ever thought to try them as I am unfamiliar with Vietnamese cooking. Oh and I missed my stove top stuffing. Only eat it a few times a year...My sister ate this way for a long time and made great cornbread stuffing but it crumbles and doesn't have the same texture but her flavor was traditional!! She also made her own bread and it was FABULOUS!! but other than Pizza and stuffing...GF diet isn't that bad once you've done the mindset adaptation (not for sissies but CAN BE DONE!)...especially if money isn't an issue...there is more GF available EVERYWHERE but for a premium. Betty Crocker or somebody like that even made a mix that is in the normal grocery aisle. Good luck and keep us posted. I have lost my old bookmarks to the Gluten Free boards I went to but the people at many were fabulous..and many on budgets with kids that eat like this and give tips. Oh and due to the neurological component of how our gut handles food, this can help your ANS to eat this way. but I never had the typical Celiac symptoms and was trying this for joint pain and fatigue. Best of luck to you.

It can add to POTS if you have digestive issues that keep you wiped out (no pun intended) I have tried eating this way a couple of times even though my blood work came back normal. First, remember you can eat many normal candys...join a GLUTEN FREE message board and mall site. They are MOST helpful. For pasta, there are many brands...and many are gross or smell weird but "ok". My favorite was Tinkyada brand. http://tinkyada.com/ My room mate ate this with no complaints. Breads are another story and I am sure those who eat GF will help you with that. Though expensive and they go stale quickly, there are some decent baking mixes or already made cookies (Pamela's Chocolate Chip and her dark colored Ginger cookies I loved) Concentrate on some sort of potatoes or rice for your bread replacements. My biggest hint is to BE on this diet at least a couple of weeks before baking. The products are different! And it's a chore to learn the special routine. you can make your own things from scratch but you need good GF flour mixes (Potato starch, rice flour, etc) If you have an oriental store near you SHOP THERE FIRST for GLUTEN FREE flour needs. They are much cheaper. Stay away from the bean flours! Even if you can eat beans as they can cause severe bloat/distress! There are good cookbooks but you can find many recipes online! The xantham gum NEEDED to make baked goods work is EXPENSIVE but shop around. Also it caused mild diarrhea in me even though it's not supposed to so just be aware. If you make baked goods, double wrap and put in fridge to keep safe or freeze. GF stuff seems to dry out QUICKLY..even if you open a box of pre made baked goods (can you tell I am a fan of sweets, too! ) Now read up, do your homework and just try not to panic. I understand the stress of cooking two meals but just make stuff you can eat and if folks want bread to BUY their choice. If they can't adapt to the Tinky pasta, have a discussion on that then. Now I must tell you I made the following GF choc cake and it's VERY GOOD. My tip, I added 1 tsp of dry decaff instant coffee (you can find the single packets in some dollar stores) I pulverize it into a power or it will stay gritty. Keep in air tight tin in Fridge and put wax paper against the edges after you cut a piece. This helps a bit to keep from drying out further. Also frost cakes when a bit warm. http://www.recipezaar.com/One-Bowl-Gluten-...ate-Cake-209764 Now take a deep breath, educate yourself, and realize many live this way. Your main trick if you eat out a lot is finding a place you TRUST to be Gluten free. Good luck. p.s. I tried this for joint pain and fatigue issues and it never helped.

Sue My New Orleans fest was 2 hour short gig, with great NOLA food and music. Can't go wrong with that combo either. now back to our topic

Sue No, it's a local New Orleans band in Ohio..but couple band members lived in NOLA for over 10 years and speak french fluently. they play Cajun, great old New Orleans Jazz/Dixieland & some gypsy tunes. but thanks for the sentiment. If Voo doo worked, I would be good witch and heal us all :-) And all would be able to shower/bathe when we wanted

Goldie Your last point well taken! I needed to add on dizzy days i can't do the shampoo thing bent over chair. have to wait. My hair is very thin and two days without washing is tough and three days equal GROSS! I wipe it with cloth around hair line and hang in there until I can wash it. My hair is long enough to pull back but thinking of getting it cut to just below chin length again...it was easier. Also today I washed hair earlier, rested, blew dry while sitting and it's the arms way up over head that gets ya. Then rested, then put velcro curlers in hair..and back to recliner to rest. I get to hear some New Orleans music for couple hours tonight so BIG DAY for me! Now if only somebody could do my makeup. I started not wearing foundation for a long time but swear I feel better when I LOOK better in the mirror but my 89 yr old mom still wears makeup so it's a comfort thing . So back to full face makeup...but know that is not possible everyday, energy wise. Grateful for whatever but dont' make yourselves feel bad if you have to do things in baby steps. & get passed the prejudice for a shower chair! It helps.