Michelle Sawicki

That's great, Amber! I'll email the info to you as soon as I get home.

Take care,

Michelle

Thank you to the 4 people who donated toward this project. We now have a total of $250. for brochures. We still need to raise another $250. to get 2500 brochures printed (provided we can get them printed at cost again) and approximately $425. to cover postage. If anyone else can help us raise the remaining $675. we would be extremely grateful. Also, if anyone has access to at-cost printing and can help us out, we'd appreciate it.

Thanks!

Michelle

You're welcome.

Hi guys,

We've recently added a new listing from Canada to our Physicians Page. I know many of you in Canada find it hard to find qualified doctors. I haven't met these guys and can't personally recommend them, but here is their contact info:

Carlos A. Morillo, MD, FRCPC, FACC & Juan C. Guzman, MD

Autonomic Disorders Laboratory - Syncope Unit

Arrhythmia Service, Cardiology Division -

Department of Medicine, Faculty of Health Sciences, McMaster University

Health Sciences Centre - Room 3E25-D

1200 Main St. W. Hamilton, Ontario, Canada, L8N3Z5

905-521-2100 Ext: 75616

Autonomic Laboratory

Hope this helps!

Hi everyone!

Dysautonomia News Winter/Spring 2006 has been published. You can read it online at: http://www.dinet.org/Winter_Spring2006/ws06news1.htm

Take care,

Michelle Sawicki

Thanks, Kristen! I will make a note that your donation is in honor of Mr. Dodd and print it as such in our newsletter at the year's end.

To those of you who volunteered to mail brochures, I've received your emails and will be in touch soon.

Thanks so much!

Michelle

Hi everyone!

Our educational brochure campaign was a big hit! We received numerous requests and sent out thousands of brochures. We just recently had a request from the Mayo Clinic for brochures, but we are unable to fill it because we've run out and currently don't have the funds to print more. We'd like to continue to educate people about dysautonomia with these brochures, but we need your help to continue this campaign. If any of you can donate funds to help with this project, we would be extremely grateful. Checks can be sent to:

DINET

PO Box 55

Brooklyn, MI 49230

Donations can also be made by credit card, debit card or online check at: http://www.dinet.org/how_you_can_help.htm

We are also in need of a volunteer who can mail brochures to recipients. Please contact me (staff@dinet.org) if you can help.

Thanks for all your help!

Michelle

Hi Poohbear,

I have the ingrediants (I even found Ponzu sauce!) but I haven't tried to make the recipes yet. We were out of town, then I got the flu for over a week...now we don't have power thanks to the storms that came through last night. It's just been one thing after another, but I am going to make some of these delicious-sounding recipes.

Janine- Garlic KILLS my tummy. I've never tried it the way you make it though. Honestly, I'm scared to even try.

Michelle

Very Cool!

-Michelle

Hey Melissa! Thanks for sharing this with us. I love pierogis....now I'm hungry.

It was great to hear your voice and laughter again.

Michelle

Some of those are pretty funny.

Michelle

Kudos to you, Nina, for having such patience.

Michelle

I've been thinking of you too. In fact, I just asked Melissa about you the other day. Hope you can come back to join the group soon.

Michelle

Hi guys,

I got the links fixed, but we're still having problems with the forms (to join, order brochures, etc.) on our site not working. The host is working on the problem. You may have trouble accessing the site and/or it may look a little odd during this time. We appreciate your patience.

Thanks,

Michelle

Please see my post "Our website host is having server problems."

Thanks,

Michelle

Hi guys,

Our server is acting up. It has affected our website and, unfortunately, until they get things fixed I cannot republish the site. So if you try to access the main site and things look funny, you know why.

Take care,

Michelle

I asked Dr. Raj (from Vanderbilt) about hyperadrenergic POTS and also beta-adrenergic hyperresponsiveness, and I have included his reply here. As I pointed out earlier, and as Dr. Raj himself states, different doctors have different ways of viewing these disorders, and they may use different criteria when labeling people with the "hyperadrenergic" form of POTS.

Do I think that Dr. Grubb's definition of hyperadrenergic POTS in his latest paper is the same as the one they are using at Vanderbilt? No, I do not.

I wish I could give you guys clear-cut answers, but I can only go by what is publsihed and what the general consensus is on such matters, and it looks like the doctors are still working on collectively dividing the POTS subgroups.

Here is Dr. Raj's response:

Michelle,

One of the big problems with POTS is that almost everyone agrees that there are multiple diseases and groups under the umbrella of POTS, but no one really agrees on how to divide the subgroups. This is one of those cases.

I think that most (if not all) patients with POTS that I see are hyperadrenergic. We often use a high level of plasma norepinephrine (a biochemical marker of sympathetic nervous system activity) as an entry criteria for our POTS studies.

We still make a poorly defined distinction within this group. There is a group (the majority) in whom the standing norepinephrine level is high, but not ridiculously high (600-1000 pg/ml). There are others in whom the norepinephrine level is very very high (>1500 pg/ml). This latter group we often think of as "primary hyperadrenergic", while the former are thought of as "secondary hyperadrenergic" (with high sympathetic tone secondary to another problem such as hypovolemia). The clinical problem is that it is not clear if the 2 groups can really be separated cleanly, nor is it clear if they respond differently to different medications.

We do not routinely assess for beta-adrenergic sensitivty. I assume that by this you mean sensitivity to isoproterenol bolus doses. I know that there are some older reports about this in POTS and IST (inappropriate sinus tachycardia), but I don't think that I have seen that much about this of late.

I am not sure if I have answered your questions or just muddied the waters further.

As an aside, I have written a review article on POTS (in which some of the subtypes are discussed) for the Indian Pacing & Electrophysiology Journal that is to be published later this spring (I think that it is supposed to come out in April 2006).

Satish

I, too, was wondering why Dr. Grubb recommended salt loading EXCEPT in hyperadrenergic patients.

My guess would be that you wouldn't want to take measures to raise the blood pressure of a patient who already has high blood pressure.

Michelle

I would do luge. That looks like such a rush.

Michelle

Jaquie,

Please send the information privately to people who are interested in this study.

For those of you who are interested in this study, please contact Jaquie privately.

We don't allow recruitment for studies on our board for the following reasons:

1. People may have a really awful experience when participating in the study and if they found out about it on our forum they may assume we support it or are even involved in it...and then come back to us angry. Not a good situation.

2. We have a page on our website where we advertise studies (with a proper disclaimer stating we can't gaurantee satisfaction) for doctors who agree to be our medical advisors. In this way, we can give something back to doctors who agree to help us, and we are more likely to get medical advisors as a result.

I hope you can understand why we do what we do.

Take care,

Michelle

You're welcome, Ernie. Glad you found it.

Michelle

Hi,

I'm going to ask one of our medical advisors about hyperadrenergic POTS and also the beta-receptor supersensitivity that Jan was talking about. I'll either post it here or in the newsletter. However, keep in mind that the different doctors have different ways of viewing these disorders, and they may use different criteria when labeling people with the "hyperadrenergic" form. Since Dr. Grubb has his own health problems and is w-a-y busy, I have not asked him to be a medical advisor. So I will probably be asking this question to someone at Vandy, who may have a different take then Grubb on the whole thing.

Michelle

Morgan, I hope things go okay with your cat. I have three dogs and they truly are part of my family. I hate when one of them is sick, and I worry about them just like I do with my son.

I wish you the best,

Michelle

Melissa, you gave me such a laugh with your garlic bread comment! I absolutely LOVE garlic, but my stomach does not. It hurts so bad after I eat garlic that it makes me want to cry. So no garlic here, but if you know of a recipe for garlic-free garlic bread, I am all ears.

Poohbear, I love green beans and bacon, so I think I will like that dish. I usually cook bacon in a frying pan, and then I take it out and put green beans in the pan (in with a little of the bacon grease). I also add a little olive oil. I fry the green beans up a bit and then throw in bacon pieces and almonds and put a lid on the pan until the green beans start to get tender, but I still stir them every once in a while so they don't burn. They taste really good.

The chicken roll ups sound great too. I am going to write down all these ingredients before I go shopping this weekend, and now I'll have lots of yummy new things to try.

Thanks!

Michelle

Hi Jan,

I think a lot of our members assume they have the hyperadrenergic form of POTS when perhaps they do not. The paper by Grubb states the following in regard to the hyperadrenergic form of POTS: "The hallmark of this form of POTS is that in addition to orthostatic tachycardia they will often display orthostatic hypertension, as well as an exaggerated response to isoproterenol infusions."

Do you have hypertention?

I think Dr. Grubb is trying to make for clearer typing of POTS, but there is obviously a lot of overlap in symptoms. Please do ask him what type he thinks you have when you see him.

Take care,

Michelle