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Hi Steph! Your assumption that the biopsy is done on the arm is correct. Mine was done on the inside upper part of the arm so it is discreet. The procedure is simple and I did fine after and would of been able to drive home. The only problem that you may have is could you react to the local anesthetic? Could that make your POTS worse? That is something to think about. You probably will be fine to go yourself but still may want company just in case. Wow, your arm is going to be famous. I wonder if they will take a picture of your face to. You will have to show us a picture of your brochure.

Creatine, I just got done researching it. I am low on creatine and I am going to start taking it. The mito Drs at Clevalad recommend 5mg divided into two doses. The best source is http://www.nutrabio.com.....It is made form a pharmacedical company. This is where mito patients get theirs from. Interesting that CC is making it now. You will have to let me know what they tell you at Cleveland.

Wow...4000 calories...you must have a super high metabolism! Do you mind my asking your height and weight. I was slightly underweight for a while at 110 lbs 5'4

37 yrs old. That was eating a lot. All of a sudden everything changed and I just gained 15 lbs. Something changed. Everyone says I look better. I hate that I do not fit into my clothes anymore. I would like to lose 5 lbs.

Back to the biopsy. Mine was done January 18th and I am still waiting on the results. My fibroblasts have been slow growing. I just called and they said probably another month. I just wanted to let you know not to expect your results for a few months.

Take care,


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I don't eat all that much soy--but I do have "Silk" brand soymilk in my cereal every morning. I also like "Tofuti" brand icecream. Trader Joes sells roasted soybeans that are pretty tasty (and nice and salty too). That's about the extent of my soy menu. I occasionally have miso soup, but only when I go out for Japanese food. Sorry I don't have more info for you--maybe others on the board will have more info on soy products.


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Steph, the only soy I use is Silk milk which I really like. I have trouble keeping weight on because my system doesn't digest anything well (no gluten, dairy, meat) but the one thing I stick to eating is peanut butter and/or almond butter every day. I buy organic and learned to like it a lot. Do you think you can handle eating this? My doctor actually recommended I do this to keep my weight from falling too low and give me much needed protein. It works for me. I can't use supplements either.

good luck and I hope you have some success with creatine and diet.

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WOW, I feel fat and healthy. I was pretty thin when I was 92 lbs at 5'4. Weight has definitely helped me to feel better. It also helps with fighting off colds and viruses. I hope the creatine works for you and you can gain weight on it. You definitely need it!!! At 125 lbs I feel very heavy and bloated. I swear 10 lbs of it has to be poop! Gross! My gut has become so sluggish. Now I understand why old grandmas talk about their BMs all the time. It is a big celebration when I go!!!

I do not plan on weight lifting. I sure could use it since I have no muscle left. Concentric exercise, such as weight lifting, stairs, shoveling are what make me sick. I tested borderline for a fatty oxidation disorder which may be the cause. I will have an answer with the biopsy results, if the fibroblasts ever grow!! Maybe once I am on all of my supplements Carnator, creatine, Co-enzyme Q 10, thiamine and riboflavin iwill tolerate exercise better. I am hopeful since I am low on these and teh metabolic Dr said not to allow anyone to accuse me of a poor diet. Because that is not the case.

Good luck on your soy adventure!


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I am on the thin side too (5? 5, 103lbs) and it?s always a fight to gain weight.

I do use soy milk and not dairy, and I also eat tofu a few times a month (stir-fried with veggies in coconut milk with some Thai spicy paste thrown in)

However, research shows there are not only benefits of soy, but also ?dangers?. I?ve pasted two links here just for additional info about the good and bad of soy. Ultimately, you?ll need to decide what works best for you. Soybeans can be hard to digest, fermented soy products like tempeh and miso are easier to digest and better for the body. (I found Soybean noodles/pasta very hard to digest.)



Other foods that you may want to consider ?

I don?t know whether you?re a vegetarian or not, so some of these may not apply.

sunflower and pumpkin seeds, almonds, cashews, pecans

cheeses, sour cream, butter (if you can tolerate dairy)

poultry, fish

Almond or other nut butters (I dip chunks of apple in almond butter sometimes?very good!)

Coconut macaroons

olive oil or grapeseed oil ? I add it to almost everything I cook for added fat. And these are good healthy fats.

Consider adding extra carbs (whatever you can stand without getting too tachy)

A weight gain powdered drink mix or something like Ensure once a day for added calories (it has a lot of corn syrup in it, but it?s a good short-term way to get added calories/fat)

Smoothie ? I make a fruit smoothie with rice protein powder and a spoonful of olive oil or flax oil every morning to get the added fat.

Hope this gives you some ideas..


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Guest Mary from OH


Trader Joe's is an excellent resource!! They have amazing protein drink powders there - regular and soy based. Also, protein bars, etc. Also, many other soy products. You can talk to any of their staff about your nutritional needs. They are very knowledgable. They also have many recipes/ideas for their products. Hope this helps a little. Tempura is a good Japanese traditonal dish and you can tempura just about anything.

Also, just adding some basic things to your diet might help. My daughter has SEVERE motility problems, gastroparesis, GERD and a very restricted diet. When she was a baby, she was failure to thrive. They have decided already that she most likely also has POTS in addition to her many other diagnoses. Some of the things her GI had us do for her when she was a baby to add on much needed weight were: add whole milk yogurt to "smoothies" - we used "p" juices to help her motility - like prune, pear, peach; add butter to anything!!; (organic) bacon - salt and fat!; Ensure with Fiber (it comes in Chocolate) or you can mix it into a smoothie too!!. My mind is going blank.

Also. I'm sure you know. Many small meals. Lots of snacks. Hummus is a great protein source. Plus, there's lots of different flavors. Again, my recommendation is Trader Joe's because they also have a money back guarantee!! Can you tell I love that place?? :angry: I live in OH too!

Best of luck to you!! I wish I could give you 50 of my pounds!! I would gladly donate them!!! :blink: Too bad it doesn't work that way!! Isn't it strange how POTS can make some people unable to gain weight and other people unable to lose it??!! It makes me nuts!! :unsure: My heart races at 120 at least, all the time, every day. That's my resting pulse. WHY am I a fat pig?? I just don't get it?? I don't sit still hardly ever and I barely eat. It drives me batty!! Sorry for the rant!! I really do wish you the best of luck!! I pray that you can gain the weight you need.

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