ArtC

My levels are very low too, and I am taking a vitamin D vitamin http://www.sourcenaturals.com/products/GP1788/ and also Carlson Cod Liver oil which is an excellent source of vitamin D http://www.carlsonlabs.com/product_detail....mp;categid=03a9. I get mine plain, but if you can have lemon, I would go with the lemon flavored. My doctor suggested the cod liver oil and whatever else I needed to do to get enough Vit. D in. He also wanted me to take Calcium with D, but the Calcium was causing major constipation issues. Part of my problem of low levels is due to malapsorption issues, but the sun hasn't helped either (in the summer). I'll re-check my levels in a few months again.

Hi, I just found out that I have rapid gastric emptying of the small intestines and delayed emptying of the colon. My doctor really doesn't know what to do with me. Because I am not digesting anything (it moves too quickly out of the small intestine), I have lots of problems with food. I have Celiac disease, fructose intolerance (no fruit, sugar or hardly any veggies) and lactose intolerance. I have to watch my diet very closely.

Hi Pamyla,

I live in Minnesota where there are several good stores that carry Gluten free food. The place where I buy the most is The Gluten Free Cupboard, there website is: http://www.glutenfreecupboard.com/index.html and they ship all over the United States. There store is dedicated to Gluten free and many other food restrictions. They have hundreds & hundreds of products available. I also find things at Fresh & Natural Foods, Whole Foods, & Wild Oats. If you were to contact Mike or Jane Mueller at the Gluten Free Cupboard, they are very helpful and knowledgeable about their foods. Another product that is Gluten free, lactose free and fructose free is the Kinnikinnick Pizza Crust Mix. I make little tarts, pizza crust, great tortilla shells, crackers, etc. out of it. I love the mix, and it has flavor.

Happy Holidays

Thanks,

I will let you know if there is any new information. I am hoping that is the case. Good luck finding something to replace the other supplement. So far I haven't found one that does the trick. I pretty much rely on pen and paper to be my brain- otherwise I would forget everything.

Hi Eillyre,

I thought I would see if you are still using Neurohelp, and if you believe it is helpful? I have POTS myself, and now my Mom is going to start Autonomic testing at Mayo Clinic with Dr. Fealy. We were wondering if this is something to bring up to him since he works with Dr. Low. We are both so sensitive to medications, and thought it would be nice to see if a supplement might help. I went online to neurohelp.com and only found one for neuropathies. I didn't see the Neurohelp essential. Thanks for your help.

You all are great! Thanks for celebrating with me!

WI Mom, you expressed interest in my story. I'll give you the short version.

In Feb. 2004, I was just recovering from a bizarre 5-month migraine -- that horrible headache all day & night for 5 months straight along with sporadic loss of vision, loss of feeling in one leg, poor sleep, poor memory, always feeling cold, sensitivity to light and noise, shaking hands, etc. Neck X-rays showed that my C2 vertebra had popped out of place & gotten twisted (I still haven't a clue how that happened -- no sudden trauma or pain that I can think of). Through readjustment of vertebrae in my neck by a Chinese orthopedic surgeon (very gradually over 6 weeks) and weekly acupuncture (2 months), I returned to dancing and normal life without any further symptoms.

I moved to NYC (SO happy to skip the daily commute!) and was studying to become a professional ballet dancer. I had a late start (age 13 1/2), but showed considerable promise; at that time I was studying at American Ballet Theatre taking class alongside many of the stars of the ballet world -- you can imagine how thrilling it was for me!

I was completely fine in March 2004 (age 20 by the way), but in April, I bagan to have difficulty with tremendous fatigue. Then I began to have episodes of my heart racing, shortness of breath, and greying vision. My memory began to get worse (much to the frustration of choreographers I was working with!) -- I would find myself not knowing where I was or where I was supposed to be going bad news whe you're living in the city!. I did full cardiology work-ups and other tests looking for more unusual conditions, but all that came of it was that my heart was perfectly sound & that my BP dropped 20+ points when I stood up.

Florinef and increased sodium intake helped initially, but my condition continued to deteriorate. I had gradually cut back my dance schedule to the point that I was not taking any ballet and only a little ballroom (which was less of a stress on my body). A TTT proved "inconclusive" even though I felt so tremendously wretched during it and for the following 2 weeks. Finally in July 2004, I collapsed at my parents' home in NJ after a ballroom performance, unable to return to the city. I've been living here since then.

My symptoms continued to get worse: fainting when standing, feeling lightheaded when sitting up too long, really bad brain fog & concentration, difficulty speaking/following conversations...the list goes on. I saw an electrophysiologist at UPenn in September 2004 whose initial diagnosis was POTS and recommended I see an expert on it. Dr. Low saw me in April 2005, confirmed the mild POTS and CFS diagnosis, and gave me a new treatment regimen. He was pretty sure he could handle the POTS, but said that the CFS was anyone's guess as to when or whether I'd get over that.

The Mestinon has totally controlled the POTS end of things so long as I don't overtire myself -- when I do, the POTS symptoms come back (although in a lesser form than before I began the Mestinon). The NeuroHelp supplements did help to a point with energy and brain function although in my excitement at regained energy I overdid things a little and began a plunge to the POTS hole. It was very foolish of me, but I learned. This time around, I'm being much more careful about pacing myself.

Right now, I plan to continue with a graduated exercise regimen & see where that leads me. In the meantime, my dad and I will continue to look at other possible solutions to the various symptoms. I must say, I'm getting a superb medical education out of all of this -- when I can remember everything I'm learning!

As for your questions:

1) Since I was 20 when the symptoms started I don't think puberty or growth spurts had anything to do with it. I didn't have any virus or illness, either, to attribute the sudden onset of symptoms. I think that the neck problem is more suspect, although none of the specialists I've seen have said anything to that affect.

2) It was very apparent to me when I was getting better, although I hate to make it sound as if this is a permanent "cured" situation -- we have no idea if or for how long this will last.

Just being able to sleep at night reduced some of the more peripheral symptoms (e.g. always feeling cold) -- I could get by comfortably wearing a turtleneck and wool sweater indoors as opposed to 3 sweaters, a parka, and gloves.

When the Mestinon began to kick in (about 3 weeks after starting it = mid-May 2005), I stopped fainting fully and I could stand/ sit up for a longer amount of time before feeling lightheaded. That has gradually improved over time allowing me to do so many things now that I couldn't before -- take a shower, stand up to do arm weights, etc. It was not a lightning-fast sudden change, but I evaluate my abilities throughout each day and keep track of changes that I've noticed. I'm very much in favour of celebrating the little steps -- my mom and I have had frivolous little celebrations at home over little things that I've been able to do such as taking a serving bowl out of an overhead cupboard without getting lightheaded, walking down the driveway and picking up a garbage can, or taking a shower without feeling lightheaded.

The fatigue has been the most disabling symptom and the hardest to gauge. I do have very sensitive body awareness (that's what comes from being a dancer!) so I have an easier time feeling the minute changes each day than some other people. But again, if you pay attention to how your body manages energy each day and watch for trends over each week, you will notice patterns. For me, about a week after I took the NeuroHelp supplements, I hopped out of bed full of energy. I just knew I could do more than usual. Of course then I was too zealous and overtired myself, resulting in a downward spiral. I rested for a few weeks to give my body a chance to get over it and then gradually began to try to build my endurance. One day I would make a sincere effort to walk around the perimeter of the living room. Once I could do that comfortably on a regular basis, I would try adding on more rooms. From there I worked on walking down the driveway and back. The goal is to work your body a little more without exhausting yourself -- over time you should be able to accomplish a little more than before.

There is such a thing as starting exercise too soon. I had a doctor that encouraged me to start walking before my body was ready and, sure enough, calamity ensued. As soon as I started I knew my body was too tired and by the time I finished my brief walk, I was totally wiped out. The exercise should not exhaust you -- challenge you, yes, and perhaps make you feel a little tired from the work, but not exhaust you or make you feel ill. Better to start with small exertion like ankle flexes or leg lifts in bed and walking around rooms in the house. From there you can work up. I'm very big on keeping an exercise log, too, so I can make sure I'm not trying too much to soon. It's also helpful on those days your body isn't up to much exercise -- you can look back and say, "Hey, maybe I can't walk quite as far today, but at least I'm doing more than I was two months ago!" Don't be overwhelmed by disappointment on those "recuperation" days; all bodies need them. I try to think of them as vacation days -- doesn't always work, though . I also try to stick to a general routine -- flexible enough to cater to my body's needs, but structured enough to encourage me to live more normally.

Chalk up another epic post to my record! Sorry this is so long, but I do like to be thorough. If you or your daughter ever wants to talk or ask questions, I'm very happy to help in whatever way I can! PMs are welcome!

Angela

Hi,

I have been gluten free for 4 years and at first it made quite a difference on my health. I still found that something still wasn't right with my diet. Just recently I found out that I also have fructose malapsorption as well. (no fruits, many veggies, honey, sugar, corn syrup, etc. ). A good link is: http://en.wikipedia.org/wiki/Fructose_malabsorption The symptoms are very similar to Celiac disease plus cause a lot of gas, bloating, diarrhea, etc. It has been a challenge finding food to eat, but I feel so much better! It will be hard watching people eat all the good food and treats over the holidays. It is tested through a hydrogen breath test.

My doctor said that 10% of Celiacs won't be-able to digest Oats at all. In general, he is very afraid of cross contamination and to proceed very cautiously. I am unable to do oats and am unsure if it is from the Celiac or fructose (there is a lot of fructose in whole grains & fiber).

What is interesting is that my doctor sees a lot of POTS patients with these problems. I also have some motility issues that aren't helping the digestion process of digestion and absorption.

For snacks I tend to eat EnerG Wylde pretzels, Glutino sesame bread sticks, some almonds, and Cheechah snacks.