Lenna

I had never heard of LDN before, but I just googled it. It sounds too good to be true! My son has not been diagnosed with CFS, but his POTS doctor has said that he suspects an autoimmune component to his POTS. I will definitely bring LDN up with the doctor at Dan's next appointment (end of Dec.). I'd love to hear more from anyone who knows more about this. Lenna

Licorice root seemed to be very helpful in reducing my son's dizziness for several months. Then he seemed to develop a tolerance to it. Now he's taking a Licorice Root "vacation" and we'll try it again in a couple of months. You need to take the type with glycyrrhizin; that's the key to its effectiveness for POTS. I went to a compounding pharmacy that sells a lot of natural remedies and asked them which brand they recommend. They gave me Licorice Root made by Douglas Laboratories. Have you checked with your doctor to make sure it's okay for you to take this?

Ramakentesh, I know that you've taken Licorice Root in the past but I thought you had stopped. Have you started it again? Or am I wrong that you had stopped for a while? My son has been taking it since the summer. Initially it definitely helped him. It made him less dizzy and I even think it helped alleviate his brain fog. Then after a while it seemed to stop helping, and now I suspect that it's actually making him feel worse. He's much dizzier than he's been in a long time. I've convinced him to give the licorice a little vacation - maybe for a month or so - but I'm hoping when he starts it again it will be beneficial once again. I'd love to hear about your experiences with it. Lenna

Erik, Thanks for those links about albumin. I read a couple of interesting things. One that really struck me is this: Hyperalbuminemia Typically this condition is a sign of severe or chronic dehydration. Chronic dehydration needs to be treated with zinc as well as with water. Zinc reduces cell swelling caused by increased intake of water (hypotonicity) and also increases retention of salt. In the dehydrated state the body has too high of an osmolarity and apparently discards zinc to prevent this. Zinc also regulates transport of the cellular osmolyte taurine and albumin is known to increase cellular taurine absorption. DOES ANYONE HERE TAKE ZINC SUPPLEMENTS?

Erik, you remember correctly! Because we have pheos in our family, my son had a bunch of testing for that and Multiple Endocrine Neoplasia. He does not have the gene for MEN, thank goodness, and the only thing they came up with that looked slightly abnormal was high albumin, indicating dehydration (even though he drinks 3-litres of water a day).

My son has been taking Licorice Root - INSTEAD of Florinef. It helped him a great deal for a few months. Now I think he has acclimated to it or something...it doesn't seem to be helping much anymore. I want to put him on a Licorice Root vacation for a few months and then try again, but he doesn't want to stop taking it. We'll see...

Licorice Root was a godsend for my son for a few months. Alas, its effects seems to have worn off but we might put him on a licorice "vacation" for awhile and then try again. Just remember that with Licorice Root, like Florinef, you might need extra Potassium.

Don't discount the visualization!!! I wish I could get my son to do it. I visualize for him...but it's not quite the same.

Midodrine is very short-acting, so I think that as long as you don't take it on the morning of your test, you'll be fine. I'm not sure about the other drug.

Julie, I'm thinking about starting Danny on something to help with his fatigue. How is Mack doing with the Provigil? And just wondering why he had stopped the Concerta.

Does anyone know if the slow-release salt tabs are available in the U.S.? I can't find them. Are they over-the-counter or by a doctor's prescription in the U.K.? If they are over-the-counter, could you please give me the name of the brand and where you get them? Maybe they can be ordered online. Thanks.

My son saw 9 different doctors in less than 3 months and not one of them had a clue as to what was wrong with him. I found the diagnosis online, then got a referral to a specialist who gave him a TTT . We might still be looking for a diagnosis 2 years later if it wasn't for the Internet.

Hi Julie, After I posted my question about Licorice Root, I realized that it's kind of a stupid question. Because it's a herbal remedy and not controlled by the FDA or whatever, there is so much variation in different brands that the amount you'd take of one brand isn't necessarily the right amount to take of another. Plus, it comes in so many different forms. So I'll stick with the recommendations on the bottle's label, and Dan will continue to take 2/day. Believe me, Dan still isn't dancing in the streets. He struggles to get to school every day. But the licorice root seems to have made just enough difference that he does in fact make it to school (well, school has only been in session for 8 days so far, but still...) I think it has helped improve his overall symptoms, but one thing I definitely have noticed is that is seems to have improved his ability to concentrate. Licorice Root with glycyrrhizin can cause high blood pressure, salt and water retention. These are what is noted as the "side effects" of licorice root. Every website I've looked at cautions about not taking it for more than a few weeks. I'm not sure what is supposed to happen if you take it long term. But until someone tells me otherwise, or its effectiveness seems to diminish, Dan will keep taking it. He physician knows that he's taking it and has given the okay. I would say that anyone thinking about taking licorice root should check with their doctors first. I just want to add that he's taking it INSTEAD of Florinef (which didn't seem to help him). I don't know if you can take Licorice Root along with Florinef. Please don't take them together without checking with your doctor. One other precaution about Licorice Root is that it can deplete your potassium. Dan is taking one potassium supplement a day, but again, I don't feel like I have enough guidance on this. I probably should bring him in to the doctor for a blood test to see if he's low on potassium. Today is Dan's 2nd anniversary of being sick. Yikes.

No, Dan hasn't tried it. Please let us know how Mack does with it. Hope he's feeling better.

Hi Julie, I was just wondering if Mack ever tried the minocycline. I have read some of your recent posts that said he hasn't been doing too well lately, (I hope things have improved by now!) and was wondering if this could have been triggered by the antibiotics, or if he had even started on them. Would love an update on this topic. Thanks! Lenna

Hi, My son started taking licorice root about 6 weeks ago. This is one of the few medications or supplements that has made a noticeable difference for him since developing POTS 2 years ago. (Florinef neither helped nor hurt.) His doctor gave him permission to try it, but didn't really have any recommendations about how much to take, or how often. The directions on the bottle says 1 - 2 per day. Right now, Danny takes 1 pill upon awakening, and another one in the mid-afternoon when he gets home from school. For those of you who have had success with licorice root, how much do you take, and how often? How long have you been taking it? Do you feel that its effects diminish over time, or does it continue to be effective? I'm wondering if 2/day is the safe amount for Dan to take, or can we increase it to 3/day? (He is 17 years old, 130 lbs.) The capsule he takes has 500 mg. licorice herbal extract, with 60 mg. glycyrrhizin. Thanks. Lenna

My son tried a gluten free diet for 8 months. He stuck to it religiously. At first he thought it might be clearing his brain fog a bit, but then he went back to his status quo. It really did nothing for him. At least now we know. At the moment, he's trying to keep his gluten consumption low, but does have a small amount when the urge strikes - a slice of pizza or a burger roll now and then. I'm not trying to discourage you - by all means, give it a try. Gluten isn't really healthy for anyone. I NEVER thought Dan could give up gluten, but there are so many substitutes out there. You just have to try lots of brands to find the ones you like. I'd be happy to share info on what he likes. And be prepared to spend a lot more for your groceries. Lenna

My son was not premature, but he was jaundiced. I wonder if this is common in POTS people as well.

Which product has the Sorbital - the Gatorade or the Nuun?

Hi Lenna, I've never tried these myself, but would they be suitable? https://www.prohealth.com//shop/product.cfm...duct__code/MJ01 Hi, Thanks for trying Renata, but the ThermoTabs make my son sick to his stomach! I never heard of the BioSalt Tabs but I know that Danny will not take another salt tablet unless I can assure him it won't make him sick. Has anyone tried the BioSalt Tabs?

Does anyone know if you can buy slow sodium tablets in the U.S.? I can't find anything online that isn't from the U.K.

With POTS, it's not blood pressure that goes up when you stand; it's your heartbeat. Your heart rate goes up 30 or more beats per minute when you have POTS.

That all sounds encouraging. For those of you who have been getting IVs, how long do the benefits last? As much as a week?

I'm sure that this has been covered in the past, but I hope people don't mind answering this again. Does anyone get IV fluids on a regular basis to help raise their blood volume? How often? Does it help? Are doctors willing to do this? Thanks. Lenna

From everything I've read online, LOW albumin is a sign of disease but high albumin is not. Of course, I'll have a conversation with his doctor now that I've done some reading. But I just want to enter the conversation with as much knowledge as I can, and my questions all prepared. Can anyone else offer anything? Thanks so much! Lenna