My Story

[Guest guest]

Thank you Dr. Grim... for everything!!! :-D

You're the best!

Mike

> I can tell you I have been hearing this story for over 40 years-

you are ARE a different preson when your K and BP is normal.

>

> This disease was first reported over 50 years ago and I have spent

my career saying it sis common. Maybe its time for a class action

law suit or at least a few to get the point acrss.

>

>

>

> May your pressure be low!

>

> CE Grim MD

> Clinical Professor of Internal Medicine

> Professor of Epidemiology

>

> Board Certified in Internal Medicine, Geriatrics and Hypertension

[Guest guest]

Mark,

Spiro was initially suggested, but I refused. I didn't want to lose

my masculinity. The doc said that low dose spiro won't do that, so

I told him, " Well, then, why don't you take it? " ;-) Naw, he was

cool about me taking the inspra. I wasn't going to take the risk.

remember, I'm single, and dating sucks as it is. I don't need to

be " feminized " as well. The price stinks, but it's worth it to save

my manhood. I felt a significant positive difference as soon as I

took my first dose, but took a real long time for the BP effect to

take hold. The only side effects I noted were some chills early

on. Other than that... relaly nothing. It's a great drug!

Thanks,

Mike

> here here i was just like all of that also.

> but did not lose my wife she is the greatest.

> but question to u is did the inspra make the most of the

difference or was some of this in your head like the drs told me

from time to time .

> like the one in e-r said MR what r we going to do for u today its

been the 3rd time we have seen u in a month and we do not treat

hypertension that would be your drs call.

> by the way my dr told me to go to the e-r.

> lol drs are so into there selves!!!!!!!

> like little gods most just make me sicker( by the way im being

very nice).

> im on spero 50 2x aday and 25 mlg of toperol 2x aday.

> and the truth is i feel like dog shit. ( sorry ).

> was u on spero and when it was gone was it better?

>

> Thanks

> Mark

> Re: my story

>

>

>

> > My worse experience in dealing with doctors through this was

that

> I

> > was scoffed at and made to feel guilty that I was seeking an

> answer

> > to how I felt. I even asked the endo doctor to let me off work

for

> a

> > couple of weeks prior to my surgery because I was coming

unglued

> > after all the hormone therapys and drug changes and her answer

was

> > why? After the surgery she commented to me that it was just

> > incredible how different I was.

>

> I can't tell you how many times I was told to see a

psychiatrist.

> It was a humiliating and awful experience. At one point, only

my

> family doctor believed me. I was so ill. I was totally

disabled.

> I had many peripheral diagnoses. I had to beg doctors to

support my

> disability claims. My now ex-wife thought it was all

depression. I

> was humiliated that I even was on disability. " What do you do

all

> day? " Like you are on vacation. Bastards!!!! Now that I have

> muscle strength, I would like to go back and punch those

<censored>

> in the face--and that inculdes a couple of arrogant doctors.

For

> those who advocate medical liability reform, please include an

> exception for arrogant doctors. They should be sued out of

> existance.

>

> I, too, am a totally different person after treatment. I can't

> believe how much better I feel (knock on wood). It seems too

good

> to be true. I feel like the hammer has got to fall again,

> sometime! It can't possibly be this good! I making

preparations to

> get my life back after 5 hellish years. I hope this isn't too

good

> to be true! I lost my wife, my career, almost my house, and my

> health. It's time to get all those back!!!! I hope that this

> improvement lasts--I worry that it won't!

>

> Thanks,

>

> Mike (on 100mg of Inspra in divided doses--Please Pfizer, don't

ever

> discontinue this drug--you can have anything, but please don't

> discontinue this drug!!!)

>

>

>

>

>

>

> -------------------------------------------------------------------

-----------

>

[Guest guest]

Mark,

Spiro was initially suggested, but I refused. I didn't want to lose

my masculinity. The doc said that low dose spiro won't do that, so

I told him, " Well, then, why don't you take it? " ;-) Naw, he was

cool about me taking the inspra. I wasn't going to take the risk.

remember, I'm single, and dating sucks as it is. I don't need to

be " feminized " as well. The price stinks, but it's worth it to save

my manhood. I felt a significant positive difference as soon as I

took my first dose, but took a real long time for the BP effect to

take hold. The only side effects I noted were some chills early

on. Other than that... relaly nothing. It's a great drug!

Thanks,

Mike

> here here i was just like all of that also.

> but did not lose my wife she is the greatest.

> but question to u is did the inspra make the most of the

difference or was some of this in your head like the drs told me

from time to time .

> like the one in e-r said MR what r we going to do for u today its

been the 3rd time we have seen u in a month and we do not treat

hypertension that would be your drs call.

> by the way my dr told me to go to the e-r.

> lol drs are so into there selves!!!!!!!

> like little gods most just make me sicker( by the way im being

very nice).

> im on spero 50 2x aday and 25 mlg of toperol 2x aday.

> and the truth is i feel like dog shit. ( sorry ).

> was u on spero and when it was gone was it better?

>

> Thanks

> Mark

> Re: my story

>

>

>

> > My worse experience in dealing with doctors through this was

that

> I

> > was scoffed at and made to feel guilty that I was seeking an

> answer

> > to how I felt. I even asked the endo doctor to let me off work

for

> a

> > couple of weeks prior to my surgery because I was coming

unglued

> > after all the hormone therapys and drug changes and her answer

was

> > why? After the surgery she commented to me that it was just

> > incredible how different I was.

>

> I can't tell you how many times I was told to see a

psychiatrist.

> It was a humiliating and awful experience. At one point, only

my

> family doctor believed me. I was so ill. I was totally

disabled.

> I had many peripheral diagnoses. I had to beg doctors to

support my

> disability claims. My now ex-wife thought it was all

depression. I

> was humiliated that I even was on disability. " What do you do

all

> day? " Like you are on vacation. Bastards!!!! Now that I have

> muscle strength, I would like to go back and punch those

<censored>

> in the face--and that inculdes a couple of arrogant doctors.

For

> those who advocate medical liability reform, please include an

> exception for arrogant doctors. They should be sued out of

> existance.

>

> I, too, am a totally different person after treatment. I can't

> believe how much better I feel (knock on wood). It seems too

good

> to be true. I feel like the hammer has got to fall again,

> sometime! It can't possibly be this good! I making

preparations to

> get my life back after 5 hellish years. I hope this isn't too

good

> to be true! I lost my wife, my career, almost my house, and my

> health. It's time to get all those back!!!! I hope that this

> improvement lasts--I worry that it won't!

>

> Thanks,

>

> Mike (on 100mg of Inspra in divided doses--Please Pfizer, don't

ever

> discontinue this drug--you can have anything, but please don't

> discontinue this drug!!!)

>

>

>

>

>

>

> -------------------------------------------------------------------

-----------

>

[Guest guest]

Thank you Doctor Grimm

In hyperaldosteronism , lowerbp2@a... wrote:

> I can tell you I have been hearing this story for over 40 years-you

are ARE a different preson when your K and BP is normal.

>

> This disease was first reported over 50 years ago and I have spent

my career saying it sis common. Maybe its time for a class action

law suit or at least a few to get the point acrss.

>

>

>

> May your pressure be low!

>

> CE Grim MD

> Clinical Professor of Internal Medicine

> Professor of Epidemiology

>

> Board Certified in Internal Medicine, Geriatrics and Hypertension

[Guest guest]

Thank you Doctor Grimm

In hyperaldosteronism , lowerbp2@a... wrote:

> I can tell you I have been hearing this story for over 40 years-you

are ARE a different preson when your K and BP is normal.

>

> This disease was first reported over 50 years ago and I have spent

my career saying it sis common. Maybe its time for a class action

law suit or at least a few to get the point acrss.

>

>

>

> May your pressure be low!

>

> CE Grim MD

> Clinical Professor of Internal Medicine

> Professor of Epidemiology

>

> Board Certified in Internal Medicine, Geriatrics and Hypertension

[Guest guest]

I have suggested before that he be tested for PA. Any results yet. The first family I saw with GRA had two boys 6 and 8 with HTN and LVH. Their K was alwasys Normal

May your pressure be low!

Clarence E. Grim, BS (Chem/Math), MS (Biochem), MD, FACP, FACC, FAHS

Clinical Professor of Medicine and Epidemiology

Director, Hypertension Diagnosis and Treatment Center

Board Certified in Internal Medicine, Geriatrics and Hypertension

Published over 220 scientific papers, book chapters and 220 abstracts in the area of high blood pressure epidemiology, physiology, endocrinology measurement, treatment and how to detect curable causes.

Listed in Best Doctors in America

Specializing in Difficult to Control High Blood Pressure and the History and Physiology of High Blood pressure in the African Diaspora

[Guest guest]

Kathy-Boo Hope my memory is working today

In 02 I started having problems with my blood pressure. I stopped by one of our fire stations and got one of the para-medics to take it. I was feeling light headed and flushed. He told me it was 168/92 and gave me 2 choices and I choose door # 2 and ended up at the hospital.

From there it ended up with me at a Dr. that they referred me to. They got me on medication and we got the blood pressure under control. In 03 it started to go back up and I was having trouble getting it back down and my neighbor who is a P.A. got me and appt. with a friend who was an internist. We decided that a complete physical would be a good start and did the blood work, x-rays and all. He called me back and said that he wanted to get some more blood work. The next day he called and said one of the test had come back positive and wanted to re-run it. He told me it was for Hep-C. I didn't have a clue what that was. 2nd time confirmed it.

Up until this time, other than the blood pressure, I had no health problems. He told me that he didn't know that much about the Hep-C so he sent me to a Gastro Dr.. The Dr., who was a friend of mine, told me I had to do the tx.. My first mistake and one that so many make is that we put way to much faith in Dr.s. They set up the tx and we got everything approved thru my insurance, Cause I didn't want to die, and began the tx. in Aug. of 03. The tx were being done thru a group called Option Care. They would delivered the Meds and if I had a problem I was to call them and they contact the Dr. and get everything taken care of. When the nurse brought my first shot she asked me what geno-type I was. I didn't know what she was talking about. I called my gasto Dr. and found out they never tested me for that or my viral load. So began my late but needed education on Hep-c.

My Geno-type was 3 and my viral load was 140,000. I was told that I might feel mild flue like symptoms and I might get a rash at the injection site. The 1st. 3 weeks went by with no problems other than restless sleep. The 4 th week brought on the headaches and the start of all over aches. I called to get something for both but my gastro(who turns out to be a real ass) said that they don't treat sides I would have to call my primary care Dr.. I called his office and he had me come right in. We had a long talk about the Hep tx and we got out some info he had. He asked if I would like to be referred to a clinic at Emory, Hosp. in Atlanta, but I told him I'd rather stay close to home for the tx so if any problems arose I'd be close to my Drs. He told me that he would treat my sides but at some point it might get to be more than he was capable of taking care of me. I loved his honesty.

The 5 th week brought more severe side, with the aches and restlessness came depression and it was getting where work was more and more difficult to do. The six week brought on the brain fog. Driving became almost scary. The 7th week as soon as I did the shot the sides hit me. Still as the sides got worst the Gastro Dr. refused to treat the sides. Said that they weren't aware of any sides from tx. Week 8 tx put me in bed It was almost impossible to sleep, and the other sides were getting worst. My wife who loves me dearly was starting to reach her limits, and my children were coming in the back doors so that they wouldn't be subject to the rages.By week 12 I was getting no sleep and just really didn't know what was going on. Debbie called my primary Dr. Who had her bring me to his office. He told us that he was at the point where he could do no more for me. When I was able to realize what was going on I was in the hospital. After meeting with the Dr. at the hospital I realize I was on the Phyic floor. after 3 days there they took me of tx.

I was clear at that time but after 6 months it was back. It took a good year before I finally shook most of the sides, The brain fog and the body aches are still here and I guess will be from now on. The pain is bearable but sometimes I have to take something. Sleep is precious and most times hard to come by, but so is money.

Ms. Debbie still loves me and the kids use the front door. I'm currently seeing a infectious disease Dr. who is very up to date on hep-c. I love him to death. My primary Dr. moved and I have a new one who told me from the start that all he knew about hep-c was what he read in books while in school. I work long hrs and have no problems for about 3 weeks then the fatigue catches up and it takes a week to get back up to speed.

My story is like a horror story, but it shouldn't have been, but I truly be live the 6 weeks of tx I did gave my liver the extra boost it needed. All my blood work is coming back great, my viral load is staying around 1200, and my enzyme levels are all in line. My Dr. told me I was one of those that really didn't need to do the tx. But he agrees the tx game me that extra help for my liver.

Would I ever do tx again, No, would I recommend tx, that is something that each person needs to decide themselves. I hope others don't put as much faith in Dr.s as I used to. I write down everything when I go to the Dr. and don't take or do anything till I educate myself. Long and rambling, sorry, I'm not a typer and usually a very private person.

Life is not a journey to the grave with the intention of arriving safely in a pretty and well-preserved body...but rather to skid in broadside, thoroughly used up, totally worn out, and loudly proclaiming, WOW! What a ride!"... Eddie Hinman

[Guest guest]

Eddie your a doll honest ya are.. Kathy Boo

-- Re: My Story

Kathy-Boo Hope my memory is working today

In 02 I started having problems with my blood pressure. I stopped by one of our fire stations and got one of the para-medics to take it. I was feeling light headed and flushed. He told me it was 168/92 and gave me 2 choices and I choose door # 2 and ended up at the hospital.

From there it ended up with me at a Dr. that they referred me to. They got me on medication and we got the blood pressure under control. In 03 it started to go back up and I was having trouble getting it back down and my neighbor who is a P.A. got me and appt. with a friend who was an internist. We decided that a complete physical would be a good start and did the blood work, x-rays and all. He called me back and said that he wanted to get some more blood work. The next day he called and said one of the test had come back positive and wanted to re-run it. He told me it was for Hep-C. I didn't have a clue what that was. 2nd time confirmed it.

Up until this time, other than the blood pressure, I had no health problems. He told me that he didn't know that much about the Hep-C so he sent me to a Gastro Dr.. The Dr., who was a friend of mine, told me I had to do the tx.. My first mistake and one that so many make is that we put way to much faith in Dr.s. They set up the tx and we got everything approved thru my insurance, Cause I didn't want to die, and began the tx. in Aug. of 03. The tx were being done thru a group called Option Care. They would delivered the Meds and if I had a problem I was to call them and they contact the Dr. and get everything taken care of. When the nurse brought my first shot she asked me what geno-type I was. I didn't know what she was talking about. I called my gasto Dr. and found out they never tested me for that or my viral load. So began my late but needed education on Hep-c.

My Geno-type was 3 and my viral load was 140,000. I was told that I might feel mild flue like symptoms and I might get a rash at the injection site. The 1st. 3 weeks went by with no problems other than restless sleep. The 4 th week brought on the headaches and the start of all over aches. I called to get something for both but my gastro(who turns out to be a real ass) said that they don't treat sides I would have to call my primary care Dr.. I called his office and he had me come right in. We had a long talk about the Hep tx and we got out some info he had. He asked if I would like to be referred to a clinic at Emory, Hosp. in Atlanta, but I told him I'd rather stay close to home for the tx so if any problems arose I'd be close to my Drs. He told me that he would treat my sides but at some point it might get to be more than he was capable of taking care of me. I loved his honesty.

The 5 th week brought more severe side, with the aches and restlessness came depression and it was getting where work was more and more difficult to do. The six week brought on the brain fog. Driving became almost scary. The 7th week as soon as I did the shot the sides hit me. Still as the sides got worst the Gastro Dr. refused to treat the sides. Said that they weren't aware of any sides from tx. Week 8 tx put me in bed It was almost impossible to sleep, and the other sides were getting worst. My wife who loves me dearly was starting to reach her limits, and my children were coming in the back doors so that they wouldn't be subject to the rages.By week 12 I was getting no sleep and just really didn't know what was going on. Debbie called my primary Dr. Who had her bring me to his office. He told us that he was at the point where he could do no more for me. When I was able to realize what was going on I was in the hospital. After meeting with the Dr. at the hospital I realize I was on the Phyic floor. after 3 days there they took me of tx.

I was clear at that time but after 6 months it was back. It took a good year before I finally shook most of the sides, The brain fog and the body aches are still here and I guess will be from now on. The pain is bearable but sometimes I have to take something. Sleep is precious and most times hard to come by, but so is money.

Ms. Debbie still loves me and the kids use the front door. I'm currently seeing a infectious disease Dr. who is very up to date on hep-c. I love him to death. My primary Dr. moved and I have a new one who told me from the start that all he knew about hep-c was what he read in books while in school. I work long hrs and have no problems for about 3 weeks then the fatigue catches up and it takes a week to get back up to speed.

My story is like a horror story, but it shouldn't have been, but I truly be live the 6 weeks of tx I did gave my liver the extra boost it needed. All my blood work is coming back great, my viral load is staying around 1200, and my enzyme levels are all in line. My Dr. told me I was one of those that really didn't need to do the tx. But he agrees the tx game me that extra help for my liver.

Would I ever do tx again, No, would I recommend tx, that is something that each person needs to decide themselves. I hope others don't put as much faith in Dr.s as I used to. I write down everything when I go to the Dr. and don't take or do anything till I educate myself. Long and rambling, sorry, I'm not a typer and usually a very private person.

Life is not a journey to the grave with the intention of arriving safely in a pretty and well-preserved body...but rather to skid in broadside, thoroughly used up, totally worn out, and loudly proclaiming, WOW! What a ride!"... Eddie Hinman

[Guest guest]

Eddie, that was great. Especially since you’re

“not a typer and very private”. Thanks for sharing.

De

Re: My Story

Kathy-Boo

Hope my memory is working today

In 02 I

started having problems with my blood pressure. I stopped by one of our fire

stations and got one of the para-medics to take it. I was feeling light headed

and flushed. He told me it was 168/92 and gave me 2 choices and I choose door #

2 and ended up at the hospital.

From

there it ended up with me at a Dr. that they referred me to. They got me on

medication and we got the blood pressure under control. In 03 it started to go

back up and I was having trouble getting it back down and my neighbor who is a

P.A. got me and appt. with a friend who was an internist. We decided that a

complete physical would be a good start and did the blood work, x-rays and all.

He called me back and said that he wanted to get some more blood work. The next

day he called and said one of the test had come back positive and wanted to

re-run it. He told me it was for Hep-C. I didn't have a clue what that was. 2nd

time confirmed it.

Up

until this time, other than the blood pressure, I had no health problems. He

told me that he didn't know that much about the Hep-C so he sent me to a Gastro

Dr.. The Dr., who was a friend of mine, told me I had to do the tx.. My first

mistake and one that so many make is that we put way to much faith in Dr.s.

They set up the tx and we got everything approved thru my insurance, Cause I

didn't want to die, and began the tx. in Aug. of 03. The tx were being done

thru a group called Option Care. They would delivered the Meds and if I had a

problem I was to call them and they contact the Dr. and get everything taken

care of. When the nurse brought my first shot she asked me what geno-type I

was. I didn't know what she was talking about. I called my gasto Dr. and found

out they never tested me for that or my viral load. So began my late but needed

education on Hep-c.

My

Geno-type was 3 and my viral load was 140,000. I was told that I might feel

mild flue like symptoms and I might get a rash at the injection site. The 1st.

3 weeks went by with no problems other than restless sleep. The 4 th week

brought on the headaches and the start of all over aches. I called to get

something for both but my gastro(who turns out to be a real ass) said that they

don't treat sides I would have to call my primary care Dr.. I called his office

and he had me come right in. We had a long talk about the Hep tx and we got out

some info he had. He asked if I would like to be referred to a clinic at Emory,

Hosp. in Atlanta, but I told him I'd rather stay close to home for the tx so if

any problems arose I'd be close to my Drs. He told me that he would treat my

sides but at some point it might get to be more than he was capable of taking

care of me. I loved his honesty.

The 5

th week brought more severe side, with the aches and restlessness came

depression and it was getting where work was more and more difficult to do. The

six week brought on the brain fog. Driving became almost scary. The 7th

week as soon as I did the shot the sides hit me. Still as the sides got worst

the Gastro Dr. refused to treat the sides. Said that they weren't aware of any

sides from tx. Week 8 tx put me in bed It was almost impossible to sleep, and

the other sides were getting worst. My wife who loves me dearly was starting to

reach her limits, and my children were coming in the back doors so that they

wouldn't be subject to the rages.By week 12 I was getting no sleep and just

really didn't know what was going on. Debbie called my primary Dr. Who had her bring

me to his office. He told us that he was at the point where he could do no more

for me. When I was able to realize what was going on I was in the hospital.

After meeting with the Dr. at the hospital I realize I was on the Phyic floor.

after 3 days there they took me of tx.

I was

clear at that time but after 6 months it was back. It took a good year before I

finally shook most of the sides, The brain fog and the body aches are still

here and I guess will be from now on. The pain is bearable but sometimes I have

to take something. Sleep is precious and most times hard to come by, but so is

money.

Ms.

Debbie still loves me and the kids use the front door. I'm currently seeing

a infectious disease Dr. who is very up to date on hep-c. I love him to

death. My primary Dr. moved and I have a new one who told me from the start

that all he knew about hep-c was what he read in books while in school. I work

long hrs and have no problems for about 3 weeks then the fatigue catches up and

it takes a week to get back up to speed.

My

story is like a horror story, but it shouldn't have been, but I truly be

live the 6 weeks of tx I did gave my liver the extra boost it needed. All my

blood work is coming back great, my viral load is staying around 1200, and my enzyme

levels are all in line. My Dr. told me I was one of those that really

didn't need to do the tx. But he agrees the tx game me that extra help for my

liver.

Would I

ever do tx again, No, would I recommend tx, that is something that each person

needs to decide themselves. I hope others don't put as much faith in Dr.s as I

used to. I write down everything when I go to the Dr. and don't take or do

anything till I educate myself. Long and rambling, sorry, I'm not a typer

and usually a very private person.

Life

is not a journey to the grave with the intention of arriving safely in a pretty

and well-preserved body...but rather to skid in broadside, thoroughly used up,

totally worn out, and loudly proclaiming, WOW! What a ride! " ...

Eddie Hinman

[Guest guest]

Welcome Willow,

Thanks for sharing your story, it is a crime that such things as the radiation for acne were done to you. Also they should have informed your parents/ doctors about the scoliosis. I am 46 w/fibro and a host of other medical problems. including asthma and a bad sinus infection, I just had a CT scan Friday and I need to see my ENT for follow-up. I have a husband and 2 children. Nick is 24, healthy and presently a pharm tech, he wand's to go on to pharm school. He has a BS in Chemistry, my daughter is 22, is studying mechanical engineering and also happens to have cystic fibrosis. I am starting to think I may have CF as well.

Well welcome again we are going to church about now.

love and God Bless,

Orange Co, CA

[Guest guest]

Greetings Willow! First of all, I love your name. Its so light and airy! Second, your in the right place. Sounds like have been through the mill. Have you given any thought to alternative treatments? Like acupuncture? I have Dystonia, and I'm thinking of looking into acupuncture myself. Is there anyone on this board that has had acupuncture done? For what reason, and did it do any good? I would also like to find an acupuncture person in the Akron area, and find out the cost. SueWillow <writewillow@...> wrote: Hello,My name is Willow Sekerke. I am a 52-year-old (53 on10-16) totally disabled woman (former pharmacist)wholives in a small trailer in rural SW Missouri. I havebeen completely disabled for 13 years as a result ofproblems that began or weren't properly treated when Iwas a child plus some adult problems as well.When the school screened me for scoliosis in the fifthgrade, I was diagnosed as having it, but nonotification was made to my physician. I fell throughthe cracks. My adult doctor tells me I should have hadHarrington rods. That can't be done as an adult so Ihave a permanent curve in my spine that puts extrapressure on muscles at certain points. Another childhood insult was the treatment of myteenage acne with xrays for something like 2 minuteson each side of my head, once or twice a month. Themedical

references I have on this treatment say thatpatients who received this basically have radiationexposure like survivors of Hiroshima and Nagasaki. Ihave a big problem with cluster migraine headaches. Ihave memory problems and up to 4 ministrokes in aweek. I have trouble walking and talking at times.Currently I am recovering from a fall last week whereI broke my fibula in 3 places. I had just beendismissed from the orthopedist 4 weeks earlier from afall where I broke my left foot in 6 places. My rightankle was shattered some years back and I have thearthritis / weather-predicting abilities (pain) thatcomes with a crushing break.When I was in my 20's I had an acute febrile illnessthat just never went away. That was the beginning offibromyalgia. Newly married and away from home for thefirst time, I recognized that I was depressed and hadbeen for a long time. As I recalled abused of mychildhood I

developed to Post Traumatic StressDisorder. I eventually worked through that and whatremains Bipolar Type II. My 'highs' are other people'snormal. My 'lows' are extreme. I have finally found agood combination of meds that eliminate rapid cycling,insomnia and other elements of Bipolar II. At 30 I had 2 car wrecks within 18 months of eachother. Both times I was stopped at a traffic light.Once I was hit head-on and once I was rear-ended. Thevertebra in my neck have slowly deteriorated until nowtwo of them are collapsing on my spinal cord. Thatgives me spinal stenosis and the possibility ofsurgery along the way. I also had a bad fall where Ilanded on my chin on a tile floor. I damaged my rightTMJ and had to go through months of therapy. I nolonger have a mouthpiece to reposition the jaw as Isleep. That may contribute to headaches, neck pain,etc.Thyroid cancer has another side-effect of the

teenageacne radiation. I've had it 3 times so far. There isan unknown lump in my neck right now. Any moreradiation treatment for this will put me at a greaterrisk for leukemia. I have skin cancers as well thatmust be monitored regularly. As a result of my thyroidsurgery, most of my salivary glands got infected andhad to be renewed. I always have to carry water orsugarfree mints to be able to talk and to eat safely.I choke easily and living with just a dog and a horseas my companions makes that scary.I have a problem with my weight. I didn't see anendocrinologist for 6 months after my surgery. Withouta proper thyroid supplement I gained almost 100lbs. Ilose weight then something like this broken anklekeeping me in bed causes me to gain again. All in all,however, I am slowly losing the weight. Currently, Ihave to use a CPAP machine because of sleep apnea so Ikeep breathing at night. The weight

increased my painlevel, decreases my activity. The radiation and thelack of saliva are causing my teeth to fall apart andneed extensive work.After working with my MD to reduce my meds, I have 18prescriptions on a regular basis (down from 25). Eachis on the lowest effective dose and many meds helpmore than one problem. Then I have 6-8 'as needed' and3 non-prescription. It is always my desire to decreasedoses and numbers of meds.I know this was long, but that is the basic picture ofwhat I am dealing with. Other things crop up from timeto time, but for now - this is an overall picture ofmy situation. For a REALLY HOT time check out http://www.peternoone.com and http://www.mikesmith1964.com

[Guest guest]

hi willow, it sure does sound like your plate is full, but you are doing a great job. hang in there. this is a group full of great people that will offer you tons of support. evelynWillow <writewillow@...> wrote: Hello,My name is Willow Sekerke. I am a 52-year-old (53 on10-16) totally disabled woman (former pharmacist)wholives in a small trailer in rural SW Missouri. I havebeen completely disabled for 13 years as a result

ofproblems that began or weren't properly treated when Iwas a child plus some adult problems as well.When the school screened me for scoliosis in the fifthgrade, I was diagnosed as having it, but nonotification was made to my physician. I fell throughthe cracks. My adult doctor tells me I should have hadHarrington rods. That can't be done as an adult so Ihave a permanent curve in my spine that puts extrapressure on muscles at certain points. Another childhood insult was the treatment of myteenage acne with xrays for something like 2 minuteson each side of my head, once or twice a month. Themedical references I have on this treatment say thatpatients who received this basically have radiationexposure like survivors of Hiroshima and Nagasaki. Ihave a big problem with cluster migraine headaches. Ihave memory problems and up to 4 ministrokes in aweek. I have trouble walking and talking at

times.Currently I am recovering from a fall last week whereI broke my fibula in 3 places. I had just beendismissed from the orthopedist 4 weeks earlier from afall where I broke my left foot in 6 places. My rightankle was shattered some years back and I have thearthritis / weather-predicting abilities (pain) thatcomes with a crushing break.When I was in my 20's I had an acute febrile illnessthat just never went away. That was the beginning offibromyalgia. Newly married and away from home for thefirst time, I recognized that I was depressed and hadbeen for a long time. As I recalled abused of mychildhood I developed to Post Traumatic StressDisorder. I eventually worked through that and whatremains Bipolar Type II. My 'highs' are other people'snormal. My 'lows' are extreme. I have finally found agood combination of meds that eliminate rapid cycling,insomnia and other elements of Bipolar II. At

30 I had 2 car wrecks within 18 months of eachother. Both times I was stopped at a traffic light.Once I was hit head-on and once I was rear-ended. Thevertebra in my neck have slowly deteriorated until nowtwo of them are collapsing on my spinal cord. Thatgives me spinal stenosis and the possibility ofsurgery along the way. I also had a bad fall where Ilanded on my chin on a tile floor. I damaged my rightTMJ and had to go through months of therapy. I nolonger have a mouthpiece to reposition the jaw as Isleep. That may contribute to headaches, neck pain,etc.Thyroid cancer has another side-effect of the teenageacne radiation. I've had it 3 times so far. There isan unknown lump in my neck right now. Any moreradiation treatment for this will put me at a greaterrisk for leukemia. I have skin cancers as well thatmust be monitored regularly. As a result of my thyroidsurgery, most of my salivary glands got

infected andhad to be renewed. I always have to carry water orsugarfree mints to be able to talk and to eat safely.I choke easily and living with just a dog and a horseas my companions makes that scary.I have a problem with my weight. I didn't see anendocrinologist for 6 months after my surgery. Withouta proper thyroid supplement I gained almost 100lbs. Ilose weight then something like this broken anklekeeping me in bed causes me to gain again. All in all,however, I am slowly losing the weight. Currently, Ihave to use a CPAP machine because of sleep apnea so Ikeep breathing at night. The weight increased my painlevel, decreases my activity. The radiation and thelack of saliva are causing my teeth to fall apart andneed extensive work.After working with my MD to reduce my meds, I have 18prescriptions on a regular basis (down from 25). Eachis on the lowest effective dose and many meds helpmore

than one problem. Then I have 6-8 'as needed' and3 non-prescription. It is always my desire to decreasedoses and numbers of meds.I know this was long, but that is the basic picture ofwhat I am dealing with. Other things crop up from timeto time, but for now - this is an overall picture ofmy situation.

Get your email and more, right on the new .com

[Guest guest]

I was a guinea pig when my pain management MD was

going to accupuncture school. I learned how to tell if

he had good needle placement (you feel something

similar to a little electric connection) so he

practiced on me for free. He hasn't done any since he

got certified as I'm pretty sure Medicare D won't pay

for it. I had a much better overall feeling after

getting 12-14 needles all across my back.

; )

Willow

--- Sue <sweetsueohio2002@...> wrote:

> Greetings Willow!

>

>

> First of all, I love your name. Its so light and

> airy! Second, your in the right place. Sounds like

> have been through the mill. Have you given any

> thought to alternative treatments? Like acupuncture?

> I have Dystonia, and I'm thinking of looking into

> acupuncture myself. Is there anyone on this board

> that has had acupuncture done? For what reason, and

> did it do any good? I would also like to find an

> acupuncture person in the Akron area, and find out

> the cost.

>

> Sue

>

> Willow <writewillow@...> wrote:

> Hello,

>

> My name is Willow Sekerke. I am a 52-year-old (53 on

> 10-16) totally disabled woman (former pharmacist)who

> lives in a small trailer in rural SW Missouri. I

> have

> been completely disabled for 13 years as a result of

> problems that began or weren't properly treated when

> I

> was a child plus some adult problems as well.

>

> When the school screened me for scoliosis in the

> fifth

> grade, I was diagnosed as having it, but no

> notification was made to my physician. I fell

> through

> the cracks. My adult doctor tells me I should have

> had

> Harrington rods. That can't be done as an adult so I

> have a permanent curve in my spine that puts extra

> pressure on muscles at certain points.

>

> Another childhood insult was the treatment of my

> teenage acne with xrays for something like 2 minutes

> on each side of my head, once or twice a month. The

> medical references I have on this treatment say that

> patients who received this basically have radiation

> exposure like survivors of Hiroshima and Nagasaki. I

> have a big problem with cluster migraine headaches.

> I

> have memory problems and up to 4 ministrokes in a

> week. I have trouble walking and talking at times.

> Currently I am recovering from a fall last week

> where

> I broke my fibula in 3 places. I had just been

> dismissed from the orthopedist 4 weeks earlier from

> a

> fall where I broke my left foot in 6 places. My

> right

> ankle was shattered some years back and I have the

> arthritis / weather-predicting abilities (pain) that

> comes with a crushing break.

>

> When I was in my 20's I had an acute febrile illness

> that just never went away. That was the beginning of

> fibromyalgia. Newly married and away from home for

> the

> first time, I recognized that I was depressed and

> had

> been for a long time. As I recalled abused of my

> childhood I developed to Post Traumatic Stress

> Disorder. I eventually worked through that and what

> remains Bipolar Type II. My 'highs' are other

> people's

> normal. My 'lows' are extreme. I have finally found

> a

> good combination of meds that eliminate rapid

> cycling,

> insomnia and other elements of Bipolar II.

>

> At 30 I had 2 car wrecks within 18 months of each

> other. Both times I was stopped at a traffic light.

> Once I was hit head-on and once I was rear-ended.

> The

> vertebra in my neck have slowly deteriorated until

> now

> two of them are collapsing on my spinal cord. That

> gives me spinal stenosis and the possibility of

> surgery along the way. I also had a bad fall where I

> landed on my chin on a tile floor. I damaged my

> right

> TMJ and had to go through months of therapy. I no

> longer have a mouthpiece to reposition the jaw as I

> sleep. That may contribute to headaches, neck pain,

> etc.

>

> Thyroid cancer has another side-effect of the

> teenage

> acne radiation. I've had it 3 times so far. There is

> an unknown lump in my neck right now. Any more

> radiation treatment for this will put me at a

> greater

> risk for leukemia. I have skin cancers as well that

> must be monitored regularly. As a result of my

> thyroid

> surgery, most of my salivary glands got infected and

> had to be renewed. I always have to carry water or

> sugarfree mints to be able to talk and to eat

> safely.

> I choke easily and living with just a dog and a

> horse

> as my companions makes that scary.

>

> I have a problem with my weight. I didn't see an

> endocrinologist for 6 months after my surgery.

> Without

> a proper thyroid supplement I gained almost 100lbs.

> I

> lose weight then something like this broken ankle

> keeping me in bed causes me to gain again. All in

> all,

> however, I am slowly losing the weight. Currently, I

> have to use a CPAP machine because of sleep apnea so

> I

> keep breathing at night. The weight increased my

> pain

> level, decreases my activity. The radiation and the

> lack of saliva are causing my teeth to fall apart

> and

> need extensive work.

>

> After working with my MD to reduce my meds, I have

> 18

> prescriptions on a regular basis (down from 25).

> Each

> is on the lowest effective dose and many meds help

> more than one problem. Then I have 6-8 'as needed'

> and

> 3 non-prescription. It is always my desire to

> decrease

> doses and numbers of meds.

>

> I know this was long, but that is the basic picture

> of

> what I am dealing with. Other things crop up from

> time

> to time, but for now - this is an overall picture of

> my situation.

>

>

>

>

>

>

>

> For a REALLY HOT time check out

> http://www.peternoone.com and

>

> http://www.mikesmith1964.com

>

>

>

>

>

>

[Guest guest]

Since you are obviously suffering from toxin overload you are on the

right track. However, since the refinery accident you may still have

toxins remaining. Since you are doing glyconutrients that is GREAT and

that will help cleanse your cells but just in case you did not know

there is another thing you can use to goose that up. You must be a

glyconutrient associate to purchase glycos so make sure you are using a

bottle of ImmunoSTART or two each month. This is the one product from

that well-known glyconutrient company that the FDA allows claims on.

These claims include the ability to remove heavy metals and toxins from

the body (withing 90 days by my experience) The product improves NK cell

production from the modified citrus pectin in it. The colostrum in it

gives nutrition that gooses up the immune system. IT also contains

beta-glucans, and lactaferrin

This product can claim to put the immune system into high gear within 15

seconds of putting it in your mouth. You suck on it as a lozenge for at

least 5-6 minutes and then you can chew it up.

I have often wondered if someone with AIDS could use ImmunoSTART alone

to get well. I know it is a huge help for everyone who uses it. When

they DO find out what REALLY causes AIDS, I think it will be like

cancer--caused by all the toxins we come in contact with.

DLB

wakeupallmankind wrote:

>

> hello eveyone. I would like to remain anonymous, but I need to be

> heard and hopefully receive some feedback or motivation. I have been

> experiencing symptoms for 6-7 years now. looks like aids. the first

> symptoms appeared in 2000 just days after a head on car accident in

> which my car was totalled and included hair loss and the beginnings of

> spider viens on my inner ankles, a temporary light red mark on my

> scalp, inner thigh irritation, small brown spots on the rim of my

> eyelids,weird smelling breath, candida. my test came back hiv

> negative. I couldn't believe it.

>

> I stopped smoking for a while and reduced my drinking for a while. I

> had no further progression untill june 2002 when I was exposed to a

> chemical air contamination accident from a local refinery. within days

> I noticed my watch was fitting looser and my scalp began to form large

> flakes almost like super thin scabs, very irritated, my energy level

> plummeted, I felt almost unable to walk, a permanent brown spot formed

> on my scalp in the same place as the temporary red spot two years

> earlier. my breath became awful, inner thigh rashes, progression of

> hair loss, progression of spider viens, 30 lb wieght loss.

>

> since this time I have started getting into supplements, natural

> remedies, fasting, glyconutrients, and on and on. I have extreme

> distrust of the medical establishment after watching my mother die

> " of " breast cancer in late 2000. not to mention their hope for me to

> test positive for hiv so they could give me a prescription and not

> have to hear my questions they don't know the answer to. I didn't have

> health insurance and it seems the only freebie I could get was an hiv

> test. I have not taken one since 2000. I have improved greatly since

> my first juice fast. I have bad habits like smoking and drinking &

> junk food that are hard to let go and I think that's stopping my

> complete detoxification. there are so many details I can't include in

> just one posting, but I welcome all questions, advice, info, comments

> thanks for reading.

>

>

--

D.L. Bullock

www.dougbullock.ws

[Guest guest]

Since you are obviously suffering from toxin overload you are on the

right track. However, since the refinery accident you may still have

toxins remaining. Since you are doing glyconutrients that is GREAT and

that will help cleanse your cells but just in case you did not know

there is another thing you can use to goose that up. You must be a

glyconutrient associate to purchase glycos so make sure you are using a

bottle of ImmunoSTART or two each month. This is the one product from

that well-known glyconutrient company that the FDA allows claims on.

These claims include the ability to remove heavy metals and toxins from

the body (withing 90 days by my experience) The product improves NK cell

production from the modified citrus pectin in it. The colostrum in it

gives nutrition that gooses up the immune system. IT also contains

beta-glucans, and lactaferrin

This product can claim to put the immune system into high gear within 15

seconds of putting it in your mouth. You suck on it as a lozenge for at

least 5-6 minutes and then you can chew it up.

I have often wondered if someone with AIDS could use ImmunoSTART alone

to get well. I know it is a huge help for everyone who uses it. When

they DO find out what REALLY causes AIDS, I think it will be like

cancer--caused by all the toxins we come in contact with.

DLB

wakeupallmankind wrote:

>

> hello eveyone. I would like to remain anonymous, but I need to be

> heard and hopefully receive some feedback or motivation. I have been

> experiencing symptoms for 6-7 years now. looks like aids. the first

> symptoms appeared in 2000 just days after a head on car accident in

> which my car was totalled and included hair loss and the beginnings of

> spider viens on my inner ankles, a temporary light red mark on my

> scalp, inner thigh irritation, small brown spots on the rim of my

> eyelids,weird smelling breath, candida. my test came back hiv

> negative. I couldn't believe it.

>

> I stopped smoking for a while and reduced my drinking for a while. I

> had no further progression untill june 2002 when I was exposed to a

> chemical air contamination accident from a local refinery. within days

> I noticed my watch was fitting looser and my scalp began to form large

> flakes almost like super thin scabs, very irritated, my energy level

> plummeted, I felt almost unable to walk, a permanent brown spot formed

> on my scalp in the same place as the temporary red spot two years

> earlier. my breath became awful, inner thigh rashes, progression of

> hair loss, progression of spider viens, 30 lb wieght loss.

>

> since this time I have started getting into supplements, natural

> remedies, fasting, glyconutrients, and on and on. I have extreme

> distrust of the medical establishment after watching my mother die

> " of " breast cancer in late 2000. not to mention their hope for me to

> test positive for hiv so they could give me a prescription and not

> have to hear my questions they don't know the answer to. I didn't have

> health insurance and it seems the only freebie I could get was an hiv

> test. I have not taken one since 2000. I have improved greatly since

> my first juice fast. I have bad habits like smoking and drinking &

> junk food that are hard to let go and I think that's stopping my

> complete detoxification. there are so many details I can't include in

> just one posting, but I welcome all questions, advice, info, comments

> thanks for reading.

>

>

--

D.L. Bullock

www.dougbullock.ws

[Guest guest]

Holy Cow ! That was some adventure you've had. I'm glad you're

doing so well and that you've found the changes you needed to make to

get there. You are correct, by the way, exercize and eating properly

are extremely important but not everyone is as lucky as you and can

get off the meds completely.

So what about your fiance? Did he return with you? Are you still

getting married or have you married yet? There are so many horror

stories about people that become ill and the fiance just walks away

or the spouse for that matter.

Personally, I've been very lucky. My husband has been through the

worst of this with me and though he's wanted to leave many times, he

didn't. We were talking about this the other night, as a matter of

fact. You see, I've married my best friend and my true love; there's

no stronger bond than those.

I've been in a two week flare (it's rainy season what do you expect?)

and he's been as patient as he can be. I'm still working part time,

even taking on extra hours because he's changed positions and is

making a little less until his incentive kicks in; so he's helping

around the house, taking our son to day camp, helping walk the dogs,

etc. He even pushes me to go to the pool to walk and even when it's

lightening out he jokes about it (at least I hope he's joking).

I was diagnosed 12 years ago in a teaching hospital in Peekskill,

NY. Only the second case they've ever seen so my diagnosis was

fast. It took 11 days, then they gave me prednisone and sent me home

two days later. Like you I went to my parents house since I made my

husband and son go to Florida for our vacation to HIS mothers. She

should live and be well, I'm glad I didn't go. My mother in law and

I don't get along.

This is getting too long so I'm going to stop. I'm glad you're home,

you're doing so well and it should only continue getting better for

you.

Take care and be well.

Ellen

Palm City, FL

[Guest guest]

Holy Cow ! That was some adventure you've had. I'm glad you're

doing so well and that you've found the changes you needed to make to

get there. You are correct, by the way, exercize and eating properly

are extremely important but not everyone is as lucky as you and can

get off the meds completely.

So what about your fiance? Did he return with you? Are you still

getting married or have you married yet? There are so many horror

stories about people that become ill and the fiance just walks away

or the spouse for that matter.

Personally, I've been very lucky. My husband has been through the

worst of this with me and though he's wanted to leave many times, he

didn't. We were talking about this the other night, as a matter of

fact. You see, I've married my best friend and my true love; there's

no stronger bond than those.

I've been in a two week flare (it's rainy season what do you expect?)

and he's been as patient as he can be. I'm still working part time,

even taking on extra hours because he's changed positions and is

making a little less until his incentive kicks in; so he's helping

around the house, taking our son to day camp, helping walk the dogs,

etc. He even pushes me to go to the pool to walk and even when it's

lightening out he jokes about it (at least I hope he's joking).

I was diagnosed 12 years ago in a teaching hospital in Peekskill,

NY. Only the second case they've ever seen so my diagnosis was

fast. It took 11 days, then they gave me prednisone and sent me home

two days later. Like you I went to my parents house since I made my

husband and son go to Florida for our vacation to HIS mothers. She

should live and be well, I'm glad I didn't go. My mother in law and

I don't get along.

This is getting too long so I'm going to stop. I'm glad you're home,

you're doing so well and it should only continue getting better for

you.

Take care and be well.

Ellen

Palm City, FL

[Guest guest]

,

?? I just read your story. Your story can somewhat apply to alot of us in the

still's group. As you have wrote that you got off medications and think diet and

exercise is the secret to all of us getting better. That is very unfair for you

to say concidering you do not know alot of our stories and do not know what we

have been through. You should not be telling people who suffer alot more than

you that all we need to do is diet and exercise. as that may have helped you it

does not mean it will help the rest of us.

Danni

________________________________________________________________________

AOL now offers free email to everyone. Find out more about what's free from AOL

at AOL.com.

[Guest guest]

,

?? I just read your story. Your story can somewhat apply to alot of us in the

still's group. As you have wrote that you got off medications and think diet and

exercise is the secret to all of us getting better. That is very unfair for you

to say concidering you do not know alot of our stories and do not know what we

have been through. You should not be telling people who suffer alot more than

you that all we need to do is diet and exercise. as that may have helped you it

does not mean it will help the rest of us.

Danni

________________________________________________________________________

AOL now offers free email to everyone. Find out more about what's free from AOL

at AOL.com.

[Guest guest]

Hi Danni and et al.

We have always had disclaimers at the bottom of our pages, asking that no one

replace a medical opinion with one that has come unsolicited through the mailing

list. It just makes good sense.

At the same time ours is an open forum, where everyone can give their opinion,

or suggestions and tell their stories. It's what makes the list and the site

what it is!

The problem with Still's Disease is that everyone is SO different..we all deal

with the basics, but then someone else's disease is more drug resistant, or may

require higher doses of everything ( I know I did )!

is simply telling her story, and I am certain that she never meant to

trivialize any ones experience with their disease pattern! Diet and exercise is

good for us IF we can manage it.

I hope everyone has an easy week end

smiles and regards

Cat

Blondedolphin172@... wrote:

,

?? I just read your story. Your story can somewhat apply to alot of us in the

still's group. As you have wrote that you got off medications and think diet and

exercise is the secret to all of us getting better. That is very unfair for you

to say concidering you do not know alot of our stories and do not know what we

have been through. You should not be telling people who suffer alot more than

you that all we need to do is diet and exercise. as that may have helped you it

does not mean it will help the rest of us.

Danni

__________________________________________________________

AOL now offers free email to everyone. Find out more about what's free from AOL

at AOL.com.

[Guest guest]

Hi Danni and et al.

We have always had disclaimers at the bottom of our pages, asking that no one

replace a medical opinion with one that has come unsolicited through the mailing

list. It just makes good sense.

At the same time ours is an open forum, where everyone can give their opinion,

or suggestions and tell their stories. It's what makes the list and the site

what it is!

The problem with Still's Disease is that everyone is SO different..we all deal

with the basics, but then someone else's disease is more drug resistant, or may

require higher doses of everything ( I know I did )!

is simply telling her story, and I am certain that she never meant to

trivialize any ones experience with their disease pattern! Diet and exercise is

good for us IF we can manage it.

I hope everyone has an easy week end

smiles and regards

Cat

Blondedolphin172@... wrote:

,

?? I just read your story. Your story can somewhat apply to alot of us in the

still's group. As you have wrote that you got off medications and think diet and

exercise is the secret to all of us getting better. That is very unfair for you

to say concidering you do not know alot of our stories and do not know what we

have been through. You should not be telling people who suffer alot more than

you that all we need to do is diet and exercise. as that may have helped you it

does not mean it will help the rest of us.

Danni

__________________________________________________________

AOL now offers free email to everyone. Find out more about what's free from AOL

at AOL.com.

[Guest guest]

Hi Danni and et al.

We have always had disclaimers at the bottom of our pages, asking that no one

replace a medical opinion with one that has come unsolicited through the mailing

list. It just makes good sense.

At the same time ours is an open forum, where everyone can give their opinion,

or suggestions and tell their stories. It's what makes the list and the site

what it is!

The problem with Still's Disease is that everyone is SO different..we all deal

with the basics, but then someone else's disease is more drug resistant, or may

require higher doses of everything ( I know I did )!

is simply telling her story, and I am certain that she never meant to

trivialize any ones experience with their disease pattern! Diet and exercise is

good for us IF we can manage it.

I hope everyone has an easy week end

smiles and regards

Cat

Blondedolphin172@... wrote:

,

?? I just read your story. Your story can somewhat apply to alot of us in the

still's group. As you have wrote that you got off medications and think diet and

exercise is the secret to all of us getting better. That is very unfair for you

to say concidering you do not know alot of our stories and do not know what we

have been through. You should not be telling people who suffer alot more than

you that all we need to do is diet and exercise. as that may have helped you it

does not mean it will help the rest of us.

Danni

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[Guest guest]

Yes, I'm sure it's exciting to find ANYTHING that helps Stills. It's only

human nature to want to spread the news... When I find something that helps me

dramatically, I'll be shouting it from the rooftops! LOL

Kind Regards,

Pat

Austin, TX

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[Guest guest]

I'm always tired, hardly ever sleep though. If I eat anything with

salt my hands swell so I can't bend my fingers. I don't have

headaches or any pains except muscle cramps in my legs. I have found

that my BP is lower when I exercising and pushing my body hard. The

BP is the highest when I sit, lower when I stand and almost normal

when I'm working out.

Get the DASH diet book and do the 14 day challenge to see if you feel better and

the BP gets a lot better.

The BP changes you descrive are normal.  What we want to know is what is it

when you are seated and using our Consumer's Guidelines when you take it. 

Have you been on sprio yet?

May your pressure be low!

CE Grim MD

Clinical Professor of Internal Medicine

Professor of Epidemiology

Board Certified in Internal Medicine, Geriatrics and Hypertension

My story

In 2005 my BP went from normal to 190/120 and would not come down.

Diagnosis - Graves Disease. I had my thyroid removed and my BP

returned to normal. In 2006 I went from casual runner to marathoner

(26.2 miles). That summer I became Pregnant with my 5th child, I

kept running until the baby got too heavy. My BPs stayed very low

during the pregnancy, except once when the electrolytes got out of

whack from too much running. During the delivery of my baby in May

of this year my BP went up to the 190s/130s, we've tried at least 5

BP meds. The only one that brings it down a little is Clonidine .2

mgs. They scanned my brain and found Chaire malformation (mild) but

no pituitary tumors. Next they ultrasounded my heart, nothing wrong

there. Ultrasound of Kidneys, nothing wrong there. MRA of renal

arteries looking for stenosis, no luck there either. Then primary

doc sent me to a new endo. He found high aldostorone, low renin and

then did a CT of adrenals which was normal except for 2-3 mm mass on

right lower kidney. I go back to see him next week to come up with a

next step.

For now, I eat nothing but fruit, veggies and brown rice. I'm

drinking 1/2 gallon of orange juice a day to get extra potassium.

I'm always tired, hardly ever sleep though. If I eat anything with

salt my hands swell so I can't bend my fingers. I don't have

headaches or any pains except muscle cramps in my legs. I have found

that my BP is lower when I exercising and pushing my body hard. The

BP is the highest when I sit, lower when I stand and almost normal

when I'm working out.

For now, I'm frustrated!

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[Guest guest]

Hi Suzana,

I completely feel you pain, and please know you are not alone. Our

son started with the fevers at 11 weeks and now at almost 3

years old he is still getting them. He also had 3 febrile seizures in

1 years time, they are very scary. He also does not take medicine

well, its a huge battle and it usually takes about 3 people to give

anything to him- 2 to hold him down and 1 to administer the medicine.

He screams the entire time. We also use predilsone, but, we are using

the Orapred disolavable tablets, 15 mg. Supposedly, it has a grape

flavor that tastes kind of like the Smarties candy. It dissolves

quickly and I I give him lots of water afterwards and he is fine. I

also give him water before so his mouth is not too dry and it

dissolves quicker. Its still a battle, but not as bad as a liquid

medication. We also bribe him each time he takes it with a toy or

cookie, sometimes this helps as well. You can find lots of info on

Orapred online. You will find lots of information and support on this

board.

best wishes,

Ruthie

mom to , age almost 3, and Gabby, age 12 months