[Guest guest]

I

chewed one of those enzymes once and my throat restricted so much I could

hardly breathe. It was an allergic reaction. I don’t know to what. SARA

-----Original

Message-----

From: Autism-Biomedical-Europe

[mailto:Autism-Biomedical-Europe ] On Behalf Of Ulla Scheinemann

Sent: 01 October 2007 13:24

To:

Autism-Biomedical-Europe

Subject:

Hi,

Is it possible, that some kids dont

tolerate the chewable enzymes from HNI because of the additives i.e.

sugar, xylitol etc in it ?

I changed it for my children and my

daughter seems more unconcentrated and my son has had thinner BM´s since

starting them - we are still strictly SCD as none of the children have been

able to eat more foods.. but we only started some months ago .. so we still

have hopes and dreams of more kind of food..

Ulla, Denmark

[Guest guest]

I'm certainlky allergic to HNI enzymes. I can manage the capsules

ok, but whenever I try to give my son some of the powdered enzymes I

end up with tears streaming down my face, sneezing like crazy and

blood shot eyes. I think the powder gets airborn more easily and

gets into my eyes and nose. The capsules are more compacted and

don't generate as much dust.

Liam

>

> I chewed one of those enzymes once and my throat restricted so

much I

> could hardly breathe. It was an allergic reaction. I don't know to

what.

> SARA

>

>

>

> Hi,

>

> Is it possible, that some kids dont tolerate the chewable enzymes

from

> HNI because of the additives i.e. sugar, xylitol etc in it ?

> I changed it for my children and my daughter seems more

unconcentrated

> and my son has had thinner BM´s since starting them - we are still

> strictly SCD as none of the children have been able to eat more

foods..

> but we only started some months ago .. so we still have hopes and

dreams

> of more kind of food..

>

> Ulla, Denmark

>

[Guest guest]

>

> Hi

> I need to know where I can get the Virastop here in Europe - I think we

> need it. Also - does anybody have any experience with giving it - does

> it have any effect on the stools ?? My son very easily gets diarrhoea

> and it will make him regress - if it works that way ..

> How long should I give it ? And what are the recommended dosage for 11

> and 12 year old autistic children ?

>

> Hope somebody can help me.

> Ulla, Denmark

>

Hi,

Try Mandi Mart. Email Mandi at MandiMart@...

Dawn

[Guest guest]

Lara,

I've got the Pre-school Playtime Volumes 1 & 2 which are for the computer. They are American so might look a little foreign but they are well designed. They are too advanced for who is 3 1/2 so I'd be willing to loan them to you for a while if you'd like to try them out. They cost about £70 so I'd like to have them back if you don't mind!

Here's the link if you want to check them out:

http://helpingtogrow.istores.com/home

Also, they make a Discrete Trial Trainer which you use on the computer. has not used it so far and you don't have to be running an ABA programme to use it. Some kids like to use it like a game and in the process they are learning. I have that as well although we are using it but I'd let you borrow it for a bit.

Email me your address if you want to borrow:

rexel 45 at aol dot com

Good Luck

Darla

Social skills, another non bio med post- sorry! does anyone know of a cd rom for kids that need to learn social skills?Lara

[Guest guest]

No that's good Darla, but at nine he needs something a bit more advanced.  I really want it to keep him amused between work, and to rotate old mastered programmes - I shall continue the search!Cheers,  I don't think it is the same one as this one doesn't give you the option of a trial.   There are several different DTT softwares on the market.  We bought the one from here:  http://helpingtogrow.istores.com/home  and they didn't ship us a trial but I found an online trial and it seemed really good. Now if I remember correctly, there are several companies selling essentially the same software and I think we trialled it online on a US site and then bought from the site above which ships to the UK from Australia.  You can watch the video on the homepage of the above site which goes through their softwares.  I use the teaching pix all the time and also have the speaking pix although I can't get it to work on my computer.  I was just never arsed to return it.   Is that clear as mud? Darla xx   Darla, I was looking at the DTT but they didn't ship to England for a trial - is that the same one?  If so, did you get a trial first? On 17 Jan 2008, at 08:26, rexel45aol wrote: Lara, I've got the Pre-school Playtime Volumes 1 & 2 which are for the computer.  They are American so might look a little foreign but they are well designed.  They are too advanced for who is 3 1/2 so I'd be willing to loan them to you for a while if you'd like to try them out.  They cost about £70 so I'd like to have them back if you don't mind!    Here's the link if you want to check them out: http://helpingtogrow.istores.com/home   Also, they make a Discrete Trial Trainer which you use on the computer. has not used it so far and you don't have to be running an ABA programme to use it. Some kids like to use it like a game and in the process they are learning.  I have that as well although we are using it but I'd let you borrow it for a bit.   Email me your address if you want to borrow:   rexel 45 at aol dot com   Good Luck Darla   In a message dated 16/01/2008 23:44:51 GMT Standard Time, larissahawkyahoo (DOT) co.uk writes: Social skills, another non bio med post- sorry! does anyone know of a cd rom for kids that need to learn social skills?Lara  e-mail provided by Moose Internet Serviceshttp://www.moose.co.uk/   e-mail provided by Moose Internet Services http://www.moose.co.uk/

[Guest guest]

Has anyone read new book, it's supposed to be what to

do beyond bfl 12 weeks but from reading the reviews on amazon it

sounds more like a motivation book? have you read this?

Hi, ! (that's my daughter that reads this board also)

Thanks,Rose

[Guest guest]

Thanks Darcy!!

I thought of you today...hope you are feeling better and hope you didn't get flooded out. I saw on the news tonight that the water hasn't crested yet in hamburg, that it is still rising and thought that was over on your side of town.

[Guest guest]

Glad you are feeling better and that you're not affected by the

flooding. Hope they were able to fix your roof today, but at least

the weather has been decent all week with no rain. At least with

allergies it isn't an infection and hopefully the meds start working

quickly for you. I've had pretty good luck w/ claritin D and

sometimes have to add Mucinex D to the mix because I get some inner

ear problems (pressure, popping, balance issues, but at least not ear

infections).

I was able to briefly check out that flylady site and I loved the

idea of the house fairy, so I think I'm going to start implementing

that.

As far as ripped goes, you can always join me;) since that is my

weight workout (for now, that chalean extreme looks interesting, have

to wait for reviews once it comes out).

>

> Hi Cheryl,

>

> I haven't been reading much lately but checked in just now and saw

my name so I HAD to reply! :-)

>

> Yep, that IS my town! The waters are rising just beyond my house

actually. We have access to the lake they keep filming at (Ore Lake)

and the news helicopters were flying around here all day (and the

news trucks were camped out on the roads). We're far enough away that

we don't have to worry about getting flooded by the lake though we

did get a lot of water in our basement a few years ago because we got

a ton of rain and our yard is low (and we have a sliding glass door

that was at that time right at ground level). We fixed the problems

that allowed it to happen and we're fine this time. This time a leak

in the roof got us damp over the weekend! (Someone is coming out

tomorrow to fix that!) Some of our neighbors are right on the lake

and my kids' bus goes around it. They said the water was coming up on

the road and the bus had to go through some good sized puddles. I

haven't ventured down there to check it out yet. I saw it 4 years ago

when it was even higher than it is at this point. A lot of people got

very wet then and could again this time.

>

> I'm feeling a little better. I finally got sick of feeling lousy

and coughing all night (and all morning and often during the day and

then having less energy because I wasn't sleeping) and finally went

to the doctor today. She thinks it is allergies! I've never been

diagnosed with allergies before but it does sound like it could be

that since I don't feel " sick " just coughing so much it is making me

crazy. It did start with a slight cold but when I wasn't getting any

better at all (hubby said I was " stuck " ) he figured I should see the

doc and I gave in. Anyway, she put me on the generic version of

Allegra to dry me up (I have terrible nasal drainage causing the

coughing, it has been a chronic condition that I always thought was

caused by surgery I had years ago but she said she's pretty sure it

is more likely allergies). The doc said if it wasn't better in a week

to call her and she'd give me a spray though she also warned me it

could be a few weeks before it is all better. I think I'm going to

try a light workout tomorrow just to see how it feels. I don't want

to get breathless because I'm afraid I'll pass out if I start

coughing in that state but hopefully it will be okay. I guess I'll

pick up on the Ripped rotation next month (or next year, we'll see,

I'm not thinking about it too much right now). Anyway, I'm going to

bed. Hopefully I'll get some sleep! ;-)

>

> Thanks so much for thinking about me!!!!

>

>

>

>

>

>

>

>

> I thought of you today...hope you are feeling better and hope you

> didn't get flooded out. I saw on the news tonight that the water

> hasn't crested yet in hamburg, that it is still rising and thought

that

> was over on your side of town.

>

[Guest guest]

Thanks Shauna, I'm really excited to learn! I'm a true beginner...haven't

experimented yet, only done a ton of internet searching over the last 6 months

or so...if I won the lotto tomorrow I'd be spending up big on all the oils, etc.

that have really caught my attention! Oh well, it will be when it will be...

[Guest guest]

>

> Thanks Shauna, I'm really excited to learn! I'm a true beginner...haven't

experimented yet, only done a ton of internet searching over the last 6 months

or so...if I won the lotto tomorrow I'd be spending up big on all the oils, etc.

that have really caught my attention! Oh well, it will be when it will be...

>

Hahaha! I understand completely -- I'm still tenderly compiling my list of

must-haves before I actually get off the pot and place an order... ;-D I dream

of the day I can afford to stock up on oils and do nothing but experiment with

scents all day! But until then, it will be one step at a time, beginning with a

few modest attempts...

[Guest guest]

Base: Benzoin, incense, Peru Balsam, Patchouli,Labdanum

Middle: Rose, Jasmine, Neroli (expensive but basic to the perfumer's palette)

Clary Sage, Geranium, Ylang Ylang

Top: Lavender, Fresh Ginger, Grapefruit, Bergamot,Lime, Black Pepper, Cedar,

Nutmeg

So, do others have suggestions to add?

Cheers!

Patty

Ganache for Lips

http://www.ganacheforlips.com

###################

Thank you so much Patty, your advice is very reassuring and your suggestions for

essences extremely helpful. It doesn't seem quite so daunting now that I know

that it's best to start out with basics as I thought I should have as many as

possible to play with but didn't take into account that some of the more exotic

oils require more expertise in order to understand and work with them.

Thanks again...great response!

xo

[Guest guest]

Natural Ionones are not distilled or extracted out of the orris rood. Too

expensive.

There are several ways how to make them naturally. They use natural enzymes and

proteins and let them work on Carotonoids from plant material.

I don't know the excact procedere or I would have put a patent on it and would

be rich.  

Udo

[Guest guest]

I have been off of my eplerenone for 6 weeks now and I am going to get my testing done.  When I do the renin and aldosterone, the recommended protocol is to also collect a 24 hour urine for K, Na, Creat and Aldo.  Could you share what values you are looking for in the results of the 24 hour urine and the importance of these results in the interpretation of the renin and aldo?  My doctors just want to do the renin and aldo so I want to be able to explain the importance of doing the 24 hour urine.Thanks in advance,Cindi

[Guest guest]

Are you taking any other meds?

>

> I have been off of my eplerenone for 6 weeks now and I am going to get my

testing done. When I do the renin and aldosterone, the recommended protocol is

to also collect a 24 hour urine for K, Na, Creat and Aldo. Could you share what

values you are looking for in the results of the 24 hour urine and the

importance of these results in the interpretation of the renin and aldo? My

doctors just want to do the renin and aldo so I want to be able to explain the

importance of doing the 24 hour urine.

>

> Thanks in advance,

>

> Cindi

>

[Guest guest]

Without the urine Na it is not possible to interpret the renin or Aldo. Does he want you tested on a low normal or high salt diet. Ask about which part of the monthly cycle the lab wants you in. But they prob don't know. The U K tells if you are losing K be sure they draw your blood correctly to get an accurate blood K. See our guidelines in our files. Tiped sad Send form miiPhone ;-)May your pressure be low!CE Grim MDSpecializing in DifficultHypertension

I have been off of my eplerenone for 6 weeks now and I am going to get my testing done. When I do the renin and aldosterone, the recommended protocol is to also collect a 24 hour urine for K, Na, Creat and Aldo. Could you share what values you are looking for in the results of the 24 hour urine and the importance of these results in the interpretation of the renin and aldo? My doctors just want to do the renin and aldo so I want to be able to explain the importance of doing the 24 hour urine.Thanks in advance,Cindi

[Guest guest]

Please begin all messages with an brief note about who you are Age gender where you live What stage if work up you r in. So I can keep you separated from the other 500 folks on here. ThanksTiped sad Send form miiPhone ;-)May your pressure be low!CE Grim MDSpecializing in DifficultHypertension

I have been off of my eplerenone for 6 weeks now and I am going to get my testing done. When I do the renin and aldosterone, the recommended protocol is to also collect a 24 hour urine for K, Na, Creat and Aldo. Could you share what values you are looking for in the results of the 24 hour urine and the importance of these results in the interpretation of the renin and aldo? My doctors just want to do the renin and aldo so I want to be able to explain the importance of doing the 24 hour urine.Thanks in advance,Cindi

[Guest guest]

Right now, only potassium and synthroid From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of Francis Bill SUSPECTED PASent: Saturday, January 01, 2011 2:24 PMTo: hyperaldosteronism Subject: Re: Are you taking any other meds?>> I have been off of my eplerenone for 6 weeks now and I am going to get my testing done. When I do the renin and aldosterone, the recommended protocol is to also collect a 24 hour urine for K, Na, Creat and Aldo. Could you share what values you are looking for in the results of the 24 hour urine and the importance of these results in the interpretation of the renin and aldo? My doctors just want to do the renin and aldo so I want to be able to explain the importance of doing the 24 hour urine.> > Thanks in advance,> > Cindi>

[Guest guest]

Give us your complete story so we can help more.Go to Conn's stories for examples. Welcome to the exciting world of Hyperaldosteronism! You are in the right place! I am Dr. CE Grim a retired Professor of Medicine and Endocrinology. I have a long standing interest is Primary Aldosteronism since medical school days when I saw my first patient with Primary Aldosteronism in 1963. I trained with Dr. Conn in Endocrinology and Metabolism 1969-70 and have published over 240 papers and book chapters in most areas of the broad discipline of High Blood Pressure. My CV is in our files for details. The goal of our group is to teach you and your health care team about the ins and outs of the causes, diagnosis and control of the many forms of hyperaldosteronism. The steps below will introduce you into the fascinating world of high blood pressure, salt (sodium(Na) chloride (Cl) or NaCL) and potassium (K) and the role of the adrenal hormone aldosterone in health and disease. Doing these in sequence will save you time and effort in getting up to speed in taking control of you health and educating your own health care team. While we can’t make you into a doctor we will make you into a pretty good BP doctor-a skill that you will have for life and you can transfer to the rest of your family who will likely have high blood pressure eventually-if they live long enough. 1. A brief history of Primary Aldosteronsim and why it is so common today in drug resistant high blood pressure. Read my article in our files on the evolution of PA (Evolution_of_PA-Grim.pdf ) and take to all members of health care team. Tell us what stage you believe you are in. This is a brief review of most causes of hyperaldosteronism, high blood pressure, low potassium (K). READING THIS HOW WILL SAVE YOU TIME AND MONEY. 2. Read about other patients with hyperaldosteronism (Conn’s syndrome). Read our Conn's stories in our files and then give us your own in as much detail as you can. Dr. Conn was the first to describe this disease process and the syndrome is named after him. The first patient is described in my review article.To see others' stories, on the Hyperaldosteronism home page, go to Files/Conn’s Stories. You'll find instructions in "A - How to put your story here.doc " First send us your story in an email and they we may have questions and suggestions before you upload it to our files. 3. DASH to lower your BP. Your and my tax dollars funded the most important series of studies on how to improve blood pressure, blood sugar, blood lipids and make your heart smaller: The DASH Eating Plan to control high blood pressure due to hyperaldosteronism and most others with high blood pressure. This will reduce your need for medications and in many will get your BP and K to goal without meds.. Get the DASH diet book by T. et al, (http://www.amazon.com/DASH-Diet-Hypertension--/dp/0743202953) read it and use it: ~$8 in paperback at your local bookstore or online. If they don’t have it ask them to order it for you. You can also get the hardback larger print version as well at Amazon. Learning to eat the DASH way will play a major role in your road to good BP and K control and, in many of our folks here, will revolutionize your life. See http://en.wikipedia.org/wiki/DASH_diet for an overview and more details. In the book go to chapter 9 and do the 14 day challenge. Tell your Dr you are doing this as your BP may plummet if you are on other meds. Measure your BP every day and post to us. or go to http://www.nhlbi.nih.gov/health/public/heart/hbp/dash/new_dash.pdf download this 64 page booklet free and do the Week on the DASH Diet for 2 weeks. If you are on BP meds be prepared for a large fall in BP (20/10 mm Hg or more) and let your Dr. know you are doing this. And/Or go to (but costs money monthly) DASH Diet for Health Program (http://www.dashforhealth.com/pages/public/tour.php)The DASH Diet for Health Program is designed to help you improve your eating and exercise habits. Twice each week they will provide you with information on our website about food, food preparation, eating out, losing weight, getting fit and much more. In addition to providing new information each week on the website, they create a web page specially for you where you can track progress in areas such as your weight, blood pressure, and exercise. I strongly recommend you get this book and read it. 4. Measure your BP: Measure your BP daily so you can see if it is getting better. If you are taking meds be sure to tell your health care team you are doing this as your BP may plummet to normal quickly. We recommend you use a device you listen to and will help you learn how to do this. If this is not something you want to do we can teach a significant other how to do it. See sharedcareinc.com or email to sharedcare@... to order a video on how to do this. If you already have one we will teach you how to teach your health care team how to validate your device. Your life and health depends on accurate BP measurements. Go to the amricanheart.org and download the Guidelines for Human Blood Pressure Measurement. Insist that your health care team do BP the AHA way. Never trust your life to an automatic BP machine unless you know it is accurate on YOU. 5. Genetics and your BP: Go to familyhistory.hhs.gov and do your detailed family medical history (FHx or FH) so we can review with you to help diagnosis (Dx) and treat (Rx) familial causes of high blood pressure and heart disease. If BP runs in your family you may save lives in your family by checking their BP yourself. 6. How to DX and treat PA: Go to our file/Conn's Articles of Note/Medications/Bravo spir 1973.pdf and read this article and take to your health care team. It is old but still one of the best in the medical management of PA. DX: Also see our file from the Endocrine Society Guidelines on PA. Dr. Grim's Perfect Primary Aldosteronism Blood and Urine Testing to diagnose PA in one day. 1. Eat a regular to high salt diet for 2 weeks.2. No BP meds in last 4-12 weeks depending on meds.3. Collect 24 hr urine for Na, K and creatinine and aldosterone. Do not lose a drop of this liquid gold. It is impossible to interpret the renin and aldo without this.4. The morning you finish the 24 hr urine have fasting blood drawn for renin, aldo and K using our guidelines to get an accurate K. Try to get this done about 4 hours after you have been out of bed.5. Send us the results with the normal values for your lab.6. If you ever have a salt (saline) infusion test for PA be certain to ask them to measure how much you pee during the 4 hours of the infusion. If it is 1-1.5 liter of urine it strongly suggests that you may have PA. If more tha 1.5 L you almost certainly have PA. 8. Become a participant in our PA Registry and contribute to our large database on PA: If you have been Dxed with PA already and are on Rx or have had surgery please go to http://www.kwiksurveys.com/online-survey.php?surveyID=HIJIO_f2685379 and complete our survey with as much information as you know. If there is some information you don't know ask us and we will help. If you need to update this as you journey thru the diagnostic/treatment process you can add another entry but label it as Nameyymmdd. For example today 6/12/09 for me would be Grim090612. This ever increasing number will allow us and you to sort your multiple entries into a dated order. 9. Learn the language: If you are new to medical lingo then download the acroyms from http://health.groups.yahoo.com/group/bloodpressureline/message/2918610. Salt and high blood pressure: To learn the state of the science of salt and blood pressure please spend some time looking at http://www.worldactiononsalt.com/evidence/treatment_trials.htm11. Become a HBP expert consumer: Expect that it will take at least several weeks to get all this digested and to learn the new language of high blood pressure health care. As most doctors and nurses in practice have had very little training in high blood pressure you must become an expert yourself. For example most have never had anyone listen with them with a double stethoscope to verify that they can hear BP sounds. We cannot make you a doctor but we will make you a pretty good BP doctor.12. How High Blood Pressure should be managed: Go to nih.gov and download and read the Joint National Commission (JNC) Report 7 to get an overview on current guidelines. I ask all my secretaries to read this so they can communicate the importance of high blood pressure to my patients. JNC 8 will be out soon.Then: get (and study) the Hypertension Primer from americanheart.org. This is the most up-to-date compendium of what is known about high blood pressure and what every Dr. should know when they graduate from Medical School. Every chapter is only 2-3 pages. Read one chapter every week-night and you will finish it in about a year. I am working on a reading guide for lay people for the Primer. Stay tuned.13. Ask us questions: Ask any questions about high blood pressure you want answered. That is what we are here for. We have had this site for 10 years and over 30,000 emails are searchable. This is the largest collection of communications about Conn's Syndrome in the World. 14. One-on-one Consulting: I can provide individual consulting if you do not want to go public. If you want individual one-on-one consulting for you and your Doctor contract me directly at lowerbp2@....15: Abbreviations of common use in aldo speak include: AME apparent mineralocorticoid excess AVS adrenal vein sampling BB beta blockers CCB calcium channel blockers Dx diagnosis FHx family history GRE glucocorticoid remedial aldosteronism MCB mineralocorticoid blocker also called AB aldosterone blocker. MHx medical history Rx treatment SHx social history May your pressure be low!Clarence E. Grim BS, MS, MD, FACP, FACC, FAHABoard Certified in Internal Medicine, Geriatrics, and High Blood Pressure Retired Faculty/Professor of Medicine (U of MO, Indiana, UCLA/DREW, Medical College of Wisconsin and Cardiology, Endocrinology, Nephrology, and Epidemiology. Specializing in Primary Aldosteronism and Difficult to Control High Blood Pressure. Right now, only potassium and synthroid From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of Francis Bill SUSPECTED PASent: Saturday, January 01, 2011 2:24 PMTo: hyperaldosteronism Subject: Re: Are you taking any other meds?>> I have been off of my eplerenone for 6 weeks now and I am going to get my testing done. When I do the renin and aldosterone, the recommended protocol is to also collect a 24 hour urine for K, Na, Creat and Aldo. Could you share what values you are looking for in the results of the 24 hour urine and the importance of these results in the interpretation of the renin and aldo? My doctors just want to do the renin and aldo so I want to be able to explain the importance of doing the 24 hour urine.> > Thanks in advance,> > Cindi>

[Guest guest]

We need you numbers and the lab normals renin, aldo and K as far back as you can go if you want us to help.Give us your complete story. Look in our file of Conn's stories.Must not have gotten my welcome see below. Welcome to the exciting world of Hyperaldosteronism! You are in the right place! I am Dr. CE Grim a retired Professor of Medicine and Endocrinology. I have a long standing interest is Primary Aldosteronism since medical school days when I saw my first patient with Primary Aldosteronism in 1963. I trained with Dr. Jerome W. Conn in Endocrinology and Metabolism 1969-70 and have published over 240 papers and book chapters in most areas of the discipline of High Blood Pressure. My CV is in our files for details. The goal of our group is to teach you and your health care team about the ins and outs of the causes, diagnosis and control of the many forms of hyperaldosteronism. The steps below will introduce you into the fascinating world of high blood pressure, salt (sodium(Na) chloride (Cl) or NaCL) and potassium (K) and the role of the adrenal hormone aldosterone in health and disease. Doing these in sequence will save you time and effort in getting up to speed in taking control of you health and educating your own health care team. While we can’t make you into a doctor we will make you into a pretty good BP doctor-a skill that you will have for life and you can transfer to the rest of your family who will likely have high blood pressure eventually-if they live long enough. 1. A brief history of Primary Aldosteronsim and why it is so common today in drug resistant high blood pressure. Read my article in our files on the evolution of PA (Evolution_of_PA-Grim.pdf ) and take to all members of health care team. Tell us what stage you believe you are in. This is a brief review of most causes of hyperaldosteronism, high blood pressure, low potassium (K). READING THIS WILL SAVE YOU TIME AND MONEY. By taking it to your health care team they will not treat their other patients in the future as badly as they may have treated you in the past. 2. Read about other patients with hyperaldosteronism (Conn’s syndrome). Read our Conn's stories in our files and then give us your own in as much detail as you can. Dr. Conn was the first to describe this disease process and the syndrome is named after him. The first patient is described in my review article.To see others' stories, on the Hyperaldosteronism home page, go to Files/Conn’s Stories. You'll find instructions in "A - How to put your story here.doc " First send us your story in an email and they we may have questions and suggestions before you upload it to our files. 3. DASH to lower your BP. Your and my tax dollars funded the most important series of studies on how to improve blood pressure, blood sugar, blood lipids and make your heart smaller: The DASH Eating Plan to control high blood pressure due to hyperaldosteronism and most others with high blood pressure. This will reduce your need for medications and in many will get your BP and K to goal without meds.. Get the DASH diet book by T. et al, (http://www.amazon.com/DASH-Diet-Hypertension--/dp/0743202953) read it and use it: ~$8 in paperback at your local bookstore or online. If they don’t have it ask them to order it for you. You can also get the hardback larger print version as well at Amazon. Learning to eat the DASH way will play a major role in your road to good BP and K control and, in many of our folks here, will revolutionize your life. See http://en.wikipedia.org/wiki/DASH_diet for an overview and more details. In the book go to chapter 9 and do the 14 day challenge. Tell your Dr you are doing this as your BP may plummet if you are on other meds. Measure your BP every day and post to us. or go to http://www.nhlbi.nih.gov/health/public/heart/hbp/dash/new_dash.pdf download this 64 page booklet free and do the Week on the DASH Diet for 2 weeks. If you are on BP meds be prepared for a large fall in BP (20/10 mm Hg or more) and let your Dr. know you are doing this. And/Or go to (but costs money monthly) DASH Diet for Health Program (http://www.dashforhealth.com/pages/public/tour.php)The DASH Diet for Health Program is designed to help you improve your eating and exercise habits. Twice each week they will provide you with information on our website about food, food preparation, eating out, losing weight, getting fit and much more. In addition to providing new information each week on the website, they create a web page specially for you where you can track progress in areas such as your weight, blood pressure, and exercise. I strongly recommend you get this book by .... and read it. 4. Measure your BP: Measure your BP daily so you can see if it is getting better. If you are taking meds be sure to tell your health care team you are doing this as your BP may plummet to normal quickly. We recommend you use a device you listen to and will help you learn how to do this. If this is not something you want to do we can teach a significant other how to do it. See sharedcareinc.com or email to sharedcare@... to order a video on how to do this. If you already have one we will teach you how to teach your health care team how to validate your device. Your life and health depends on accurate BP measurements. Go to the amricanheart.org and download the Guidelines for Human Blood Pressure Measurement. Insist that your health care team do BP the AHA way. Never trust your life to an automatic BP machine unless you know it is accurate on YOU. 5. Genetics and your BP: If you have a twin be sure to let us know. Go to familyhistory.hhs.gov and do your detailed family medical history (FHx or FH) so we can review with you to help diagnosis (Dx) and treat (Rx) familial causes of high blood pressure and heart disease. If BP runs in your family you may save lives in your family by checking their BP yourself. 6. How to DX and treat PA: Go to our file/Conn's Articles of Note/Medications/Bravo spir 1973.pdf and read this article and take to your health care team. It is old but still one of the best in the medical management of PA. Note one with PA whose BP and K normalized with low Na, High K diet and only 25 mg of spiro. DX: Also see our file from the Endocrine Society Guidelines on PA. 7. Dr. Grim's Perfect Primary Aldosteronism Blood and Urine Testing to diagnose PA in one day. 1. Eat a regular to high salt diet for 2 weeks.2. No BP meds in last 4-12 weeks depending on meds.3. Collect 24 hr urine for Na, K and creatinine and aldosterone. Do not lose a drop of this liquid gold. It is impossible to interpret the renin and aldo without this.4. The morning you finish the 24 hr urine have fasting blood drawn for renin, aldo and K using our guidelines to get an accurate K (http://groups.yahoo.com/group/hyperaldosteronism/files/Investigating%20elevated%20potassium%20values..txt) Try to get this done about 4 hours after you have been out of bed.5. Send us the results with the normal values for your lab.6. If you ever have a salt (saline) infusion test for PA be certain to ask them to measure how much you pee during the 4 hours of the infusion. If it is 1-1.5 liter of urine it strongly suggests that you may have PA. If more tha 1.5 L you almost certainly have PA. I helped perfect this test and have probably done more saline infusions than anyone in the world. 8. Become a participant in our PA Registry and contribute to our large database on PA: If you have been Dxed with PA already and are on Rx or have had surgery please go to http://www.kwiksurveys.com/online-survey.php?surveyID=HIJIO_f2685379 and complete our survey with as much information as you know. If there is some information you don't know ask us and we will help. If you need to update this as you journey thru the diagnostic/treatment process you can add another entry but label it as Nameyymmdd. For example today 6/12/09 for me would be Grim090612. This ever increasing number will allow us and you to sort your multiple entries into a dated order. 9. Learn the language: If you are new to medical lingo then download the acroyms from http://health.groups.yahoo.com/group/bloodpressureline/message/2918610. Salt and high blood pressure: To learn the state of the science of salt and blood pressure please spend some time looking at http://www.worldactiononsalt.com/evidence/treatment_trials.htm11. Become a HBP expert consumer: Expect that it will take at least several weeks to get all this digested and to learn the new language of high blood pressure health care. As most doctors and nurses in practice have had very little training in high blood pressure you must become an expert yourself. For example most have never had anyone listen with them with a double stethoscope to verify that they can hear BP sounds. We cannot make you a doctor but we will make you a pretty good BP doctor. Read our consumer's guide to an accurate blood pressure.12. How High Blood Pressure should be managed: Go to nih.gov and download and read the Joint National Commission (JNC) Report 7 to get an overview on current guidelines. I ask all my secretaries to read this so they can communicate the importance of high blood pressure to my patients. JNC 8 will be out soon.Then: get (and study) the Hypertension Primer from americanheart.org 4th addition. I coauthored the chapter on BP measurement. You can also get this for about $6 from Amazon.com. This is the most up-to-date compendium of what is known about high blood pressure and what every Dr. should know when they graduate from Medical School. Every chapter is only 2-3 pages. Read one chapter every week-night and you will finish it in about a year. I am working on a reading guide for lay people for the Primer. Stay tuned. If you don't like it take it to your health care team so they will know what every medical student today should know.13. Ask us questions: Ask any questions about high blood pressure you want answered. That is what we are here for. We have had this site for 10 years and over 30,000 emails are searchable. This is the largest collection of communications about Conn's Syndrome in the World. 14. One-on-one Consulting: I can provide individual consulting if you do not want to go public. If you want individual one-on-one consulting for you and your Doctor contract me directly at lowerbp2@....15: Abbreviations of common use in aldo speak include: AME apparent mineralocorticoid excess AVS adrenal vein sampling BB beta blockers CCB calcium channel blockers Dx diagnosis FHx family history GRE glucocorticoid remedial aldosteronism LNaV8 low sodium V8 juice. MCB mineralocorticoid blocker also called AB aldosterone blocker. MHx medical history Rx treatment SHx social history UNaKCr urinary sodium, potassium, creatinine May your pressure be low!Clarence E. Grim BS, MS, MD, FACP, FACC, FAHA Council for High Blood Pressure Research. Board Certified in Internal Medicine, Geriatrics, and High Blood Pressure by the American Society of Hypertension. Retired Faculty/Professor of Medicine (U of MO, Indiana, UCLA/DREW, Medical College of Wisconsin in Nephrology, Endocrinology, Cardiology, and Epidemiology. Specializing in Primary Aldosteronism and Difficult to Control High Blood Pressure. I finally got an appointment in April with the Mayo Clinic after being refused for my brain tumor workup that led to my assault in 1996. I guess doing geneology and finding my family line of doctors work there and some of the family lines and financial contributors are also on their foundations and boards....next would have been an act of congress but that was done also for research subjects so I guess I have worked hard since 1996....my cortisol is normal, I'm on 200 mg spirolactone BID, my aldesterone was a 44 when norm is 24, and I'm waiting on a renin lab result. My MRI shows a pineal cyst and front lateral horn brain injury (mild strokes), and I have been misdiagnosed through the years when I had auspberger's the whole time. I also had a chronic vitamin D problem with levels that went down to 8 and is now up to 85 taking 50,000 iu of D3 a week. My hands go numb and I thought I was sleeping on them wrong but it happens several times in one month so I know it isn't that....what causes that to occur? Does the hormone block nerves?Sleepless in St.

[Guest guest]

So here is most of the story on the medical story starting at birth.

My grandmother was raped by a pervert neighbor when she was younger and raised

the child which I figured out is my Mom.

Mom was sexually exploited by a married man...do these serial sex offenders ever

stop? When she had me, she was talked into giving me to a distant cousin of her

Mom's family and an attorney arranged for an unethical transfer.

At the same time, an Indian Adoption Project had been developed with further

exploitation of myself in an experimental surgery project of children with birth

defects and facial anomilies....my salivary was partially removed and the R & D

teams in science and technology had their way with the tissue sampling and

reusing the findings in developing new commercial products.

Good news, the enzyme depletion meant no diabetes, and possibly no cancer since

my cells have lost some of its ability to clone on a cellular level. Maybe no

cancer? My mother had breast cancer at age 42. I am 52 and no cancer yet, just

benign growths or cysts.

bad news, lower levels of the enzymes at a developmental age meant my CNS and

RNA has been altered so I was extremely hyper, had alot of rage issues when my

hormones changed at puberty, was a nervous child, bit my nails, and got an

unhealthy share of corporeal punishment as a child.

This provided pharmaceutical companies the best advantage to market

brain/hormone altering drugs coincidently coinciding with CIA MKULTRA projects

so as a high functioning auspberger, I could fit into other dx of mental health

instability in the 1970's and get all the chemical cocktails the government

could dish out.

Then came a doctor in the early 1980's telling me I needed a workup for a brain

tumor. They didn't have MRI's so I went into doctors office only to be led down

the path of let's test for a bad gall bladder....No one also monitored me for

the enzmye loss from the parotid removal. The Tuskegee experiment was alive and

well it seemed.

So then I moved into the land of 10,000 lakes and 10,000 quacks, quit smoking

and had my MRI when they finally decided to take one (the Mayo refused the

workup) and then misread it several times....these guys really like to cover for

each other...I got assaulted, a mild tbi that was equally misdiagnosed with the

auspberger's and brain tumor, and then the MRI was finally read to show the

frontal lateral horn damage ( mild strokes had occurred)....and a cataract from

the wrong drugs in my system.....court cases may have ensued but the states

benefitted

not necessarily the victims of the physical damages.

After all this stress, it went from bad to worse as I steadily gained weight

from 135-140 to 220-230 within a ten year period, early menopause in my 40's,

started losing all my teeth on the sides, as well as losing my hair. I went to

a weight loss doctor who has been monitoring me for a few years until I asked

for the aldesterone test and it came up at about 44 when it should be about 24.

They also referred me out to a dermatologist who treats hair loss who started me

on the spirolactone. My hair gradually started growing back.

So now I am finally getting an appointment at the Mayo after they refused me so

many times for no real reason nor explanation. Others have been refused I heard

at a conference so I don't feel alone with this problem. After telling them I

had found my birth family and they were some of the first families of the state

I discovered, maybe that helped since they also were the first families of

industry which meant they probably are larger foundation contributors which I

was right so I am off to the Mayo for CAT scans and AVS?....and being mentally

disabled sucks even if I am from the old families of the midwest (they came from

the New England and Southern states)....

So maybe I will find a distant cousin on here who also has the same

disorder...mine may be secondary hyperaldesterone since I found a family line

history of Bright's disease as well and I have also a test showing a left

thinning of one kidney and once some protein in the urine.

Thanks for listening to my story.

[Guest guest]

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