Sweating

[Guest guest]

In a message dated 4/30/07 8:43:13 AM, frand2@... writes:

>

> Dr. Grim

>

> High BP is listed as a symptom of a PTH tumor. I have been looking

> at posts in a group for people with high PTH and most of them feel

> much better after surgery. Although some of others have had 3 1/2

> glands removed and now have low PTH levels. Those are usually the

> ones who went to surgeon without experience. I agree with my doctor

> who says to get the tumor out first and then go from there. If it

> doesn't lower my bp, it doesn't lower my bp but it should help my

> other symptoms.

>

> Fran

>

>

>

Most of the studies we have reviewed were not very good from the BP point of

view. Not well controlled and not good followup . In the one we did on a few

patients we did not find any improvement of BP when we had many well done BPs

before and after surgery.

May your pressure be low!

Clarence E. Grim, BS, MS, MD

Senior Consultant to Shared Care Research and Consulting, Inc.

(sharedcareinc.com)

Clinical Professor of Internal Medicine and Epidemiology Med. Col. WI

Clinical Professor of Nursing, Univ. of WI, Milwaukee

Specializing in Difficult to Control High Blood Pressure

and the Physiology and History of Survival During

Hard Times and Heart Disease today.

**************************************

See what's free at http://www.aol.com.

[Guest guest]

In a message dated 4/30/07 8:28:04 AM, frand2@... writes:

>

> DJ,

> Do you have any numbness in your feet? I have pain and numbness in

> my feet and hands and sometimes a burning sensation. Before the

> numbness started, I had a tingling sensation in legs and feet. One

> neurologist prescribed Topomax but that made it worse. An EMG didn't

> show any nerve damage but ones done a couple of years later showed

> that I have nerve damage. My K has been as high as 4.9 and I still

> had the pain and numbness.

>

> Fran

>

>

>

do you sit in a hard chair at the computer all day. If so you may be having a

carpal tunnel like problem the nerves going to your feet.

May your pressure be low!

Clarence E. Grim, BS, MS, MD

Senior Consultant to Shared Care Research and Consulting, Inc.

(sharedcareinc.com)

Clinical Professor of Internal Medicine and Epidemiology Med. Col. WI

Clinical Professor of Nursing, Univ. of WI, Milwaukee

Specializing in Difficult to Control High Blood Pressure

and the Physiology and History of Survival During

Hard Times and Heart Disease today.

**************************************

See what's free at http://www.aol.com.

[Guest guest]

In a message dated 4/30/07 8:43:13 AM, frand2@... writes:

>

> Dr. Grim

>

> High BP is listed as a symptom of a PTH tumor. I have been looking

> at posts in a group for people with high PTH and most of them feel

> much better after surgery. Although some of others have had 3 1/2

> glands removed and now have low PTH levels. Those are usually the

> ones who went to surgeon without experience. I agree with my doctor

> who says to get the tumor out first and then go from there. If it

> doesn't lower my bp, it doesn't lower my bp but it should help my

> other symptoms.

>

> Fran

>

>

>

Most of the studies we have reviewed were not very good from the BP point of

view. Not well controlled and not good followup . In the one we did on a few

patients we did not find any improvement of BP when we had many well done BPs

before and after surgery.

May your pressure be low!

Clarence E. Grim, BS, MS, MD

Senior Consultant to Shared Care Research and Consulting, Inc.

(sharedcareinc.com)

Clinical Professor of Internal Medicine and Epidemiology Med. Col. WI

Clinical Professor of Nursing, Univ. of WI, Milwaukee

Specializing in Difficult to Control High Blood Pressure

and the Physiology and History of Survival During

Hard Times and Heart Disease today.

**************************************

See what's free at http://www.aol.com.

[Guest guest]

DJ,

Do you have any numbness in your feet? I have pain and numbness in

my feet and hands and sometimes a burning sensation. Before the

numbness started, I had a tingling sensation in legs and feet. One

neurologist prescribed Topomax but that made it worse. An EMG didn't

show any nerve damage but ones done a couple of years later showed

that I have nerve damage. My K has been as high as 4.9 and I still

had the pain and numbness.

Fran

>

> Shotzie, Where did you have your surgery? How large was your

tumor? I have just had a ct scan and they found a tumor 2.2

centimeters in my adrenal gland. The doctor just wants to monitor

for now. I am on 50 ml of spirolactone and 25 of procardia and

postassium suppliments (20 MEQ/day). My blood pressure is under

control with medication, but I have tingling in feet and hand that

keep me up at night, also muscle fatigue after exercise. Did they

remove the whole adrenal gland? dJ

>

>

> Re:Sweating

>

> I had elevated PTH and calcium levels along with my

> hyperaldosteronism

> After my surgery for the adrenal adenoma my levels

> returned to normal

> My endo also did a vitamin D level which was 11, very

> low, he blamed the elevated PTH on that although on

> PubMed I found an article discussing the relationship

> between elevated aldosterone levels and elevated PTH.

> Mentioned it to my endo but he wasn't impressed.

>

> I am also continuing to show high fasting blood sugar

> levels six months post op which is very discouraging

> to me. I was 75 -80 several years ago, when I became

> hypokalemic my FBS went to 99-101, two weeks ago it

> was 109 even though I have lowered my triglyceride

> levels, eat a great diet and exercise.

>

> I have researched and found that the insulin

> resistance should correct by 6 months post op so I am

> concerned.

> The many years of the excess aldosterone have done

> damage to my body, no doubt. I feel great with my

> life back to better than it was in a long time, just

> afraid I will never be able to let my guard down.

>

> Sweating, headaches, muscle weakness,cramping and

> fatigue are all gone. Drove from South Carolina to

> Central NY last Thursday and felt great after, all

> those years I couldn't tolerate more than a few hours

> in the car..... so many symptoms gone that I attribute

> to the hyperaldosteronism even if my doctors don't

> agree.

>

> ____________ _________ _________ _________ _________ __

>

[Guest guest]

Dr. Grim

High BP is listed as a symptom of a PTH tumor. I have been looking

at posts in a group for people with high PTH and most of them feel

much better after surgery. Although some of others have had 3 1/2

glands removed and now have low PTH levels. Those are usually the

ones who went to surgeon without experience. I agree with my doctor

who says to get the tumor out first and then go from there. If it

doesn't lower my bp, it doesn't lower my bp but it should help my

other symptoms.

Fran

>

>

> In a message dated 4/29/07 3:30:44 PM, frand2@... writes:

>

>

> >

> > Shotzie,

> >

> > When I was first diagnosed with PA in Oct 02, nothing showed up on

> > the scan. Finally another scan done in spring 05 showed an " area

of

> > nodularity " on my left adrenal. I went to UVA for a saline

> > suppression test and my aldo was suppressed by saline so the endo

> > said the high aldo wasn't caused by a tumor. I don't have any

> > problems with spiro and it helps my bp but doesn't control it.

Since

> > my sodium level is low, I am afraid to follow the DASH diet. I

> > thought I was making progress with the PTH diagnosis until I saw

the

> > surgeon. I have pretty much decided to go to Fla for PTH surgery.

> >

> > Fran

> >

> >

> >

>

> Please review the data on how Parathyroid surgery makes people feel

better

> and if it chnages

> BP. Our own carefull data suggest that BP does not get better.

>

> Once again you have early (personal or individual) PA the is

suppressible in

> thie stage because you turmor(s) are not producing 2 x your nomral

> aldosterone.

>

>

>

> May your pressure be low!

>

> Clarence E. Grim, BS, MS, MD

> Senior Consultant to Shared Care Research and Consulting, Inc.

> (sharedcareinc.com)

> Clinical Professor of Internal Medicine and Epidemiology Med. Col.

WI

> Clinical Professor of Nursing, Univ. of WI, Milwaukee

>

> Specializing in Difficult to Control High Blood Pressure

> and the Physiology and History of Survival During

> Hard Times and Heart Disease today.

>

>

>

> **************************************

> See what's free at http://www.aol.com.

>

>

>

[Guest guest]

I also assume that after PT surgery:

1. You medicines did not change and were stopped?

2. You diet did not change?

3. You did not decide to take your meds more regulaly after surgery as you

did not want to do that again?

BP was measured properly for some time before and after the surgery to

document that it got better?

Any of the above will influence the interpretation that PT surgery cured your

high blood pressure.

In a message dated 4/30/07 12:24:49 PM, val@... writes:

>

> My BP was running 210/120 and I was very ill. It was not controlled with

> HCTZ, a beta blocker and an ace inhibitor. After parathyroid surgery, it

> pretty much normalized. Now, trying to take any T3 (thyroid) shoots BP back

> up again.

>

> Val

>

> From: hyperaldosteronism@hyperaldostehyp

> [mailto:hyperaldosteronism@hyperaldostehyp] On Behalf Of lowerbp2@...

>

> Most of the studies we have reviewed were not very good from the BP point of

>

> view. Not well controlled and not good followup . In the one we did on a few

>

> patients we did not find any improvement of BP when we had many well done

> BPs

> before and after surgery.

>

>

[Guest guest]

In a message dated 4/30/07 10:54:13 AM, frand2@... writes:

>

> Dr. Grim,

> No I do not sit on a hard chair all day. Sitting does not make it

> worse, standing and walking does. They are red, hot and inflammed.

> I think it is some version of plantar faciatis only in the front of

> my feet. The muscles in the backs of my legs and my back are VERY

> tight. I went to one Dr who said I didn't have an inflammation in my

> feet. He ignored the blood tests he ordered that showed my sed rate

> was 38 (range 0-30). He wanted to give me neurontin although I told

> him it makes the pain worse. My guess is he was getting a few

> benefits to push pills.

>

> Fran

>

Well one benfits that some seem to forget is that you see your patients feel

better and/or are healthier.

I acutally call that a major benefit.

>

>

> >

> >

> > In a message dated 4/30/07 8:28:04 AM, frand2@... writes:

> >

> >

> > >

> > > DJ,

> > > Do you have any numbness in your feet? I have pain and numbness in

> > > my feet and hands and sometimes a burning sensation. Before the

> > > numbness started, I had a tingling sensation in legs and feet. One

> > > neurologist prescribed Topomax but that made it worse. An EMG

> didn't

> > > show any nerve damage but ones done a couple of years later showed

> > > that I have nerve damage. My K has been as high as 4.9 and I still

> > > had the pain and numbness.

> > >

> > > Fran

> > >

> > >

> > >

> >

> > do you sit in a hard chair at the computer all day. If so you may

> be having a

> > carpal tunnel like problem the nerves going to your feet.

> >

> >

> >

> > May your pressure be low!

> >

> > Clarence E. Grim, BS, MS, MD

> > Senior Consultant to Shared Care Research and Consulting, Inc.

> > (sharedcareinc. (sh

> > Clinical Professor of Internal Medicine and Epidemiology Med. Col.

> WI

> > Clinical Professor of Nursing, Univ. of WI, Milwaukee

> >

> > Specializing in Difficult to Control High Blood Pressure

> > and the Physiology and History of Survival During

> > Hard Times and Heart Disease today.

> >

> >

> >

> > ************ ******** ******** *******

> > See what's free at http://www.aol.http

> >

> >

> >

[Guest guest]

Dr. Grim,

No I do not sit on a hard chair all day. Sitting does not make it

worse, standing and walking does. They are red, hot and inflammed.

I think it is some version of plantar faciatis only in the front of

my feet. The muscles in the backs of my legs and my back are VERY

tight. I went to one Dr who said I didn't have an inflammation in my

feet. He ignored the blood tests he ordered that showed my sed rate

was 38 (range 0-30). He wanted to give me neurontin although I told

him it makes the pain worse. My guess is he was getting a few

benefits to push pills.

Fran

>

>

> In a message dated 4/30/07 8:28:04 AM, frand2@... writes:

>

>

> >

> > DJ,

> > Do you have any numbness in your feet? I have pain and numbness in

> > my feet and hands and sometimes a burning sensation. Before the

> > numbness started, I had a tingling sensation in legs and feet. One

> > neurologist prescribed Topomax but that made it worse. An EMG

didn't

> > show any nerve damage but ones done a couple of years later showed

> > that I have nerve damage. My K has been as high as 4.9 and I still

> > had the pain and numbness.

> >

> > Fran

> >

> >

> >

>

> do you sit in a hard chair at the computer all day. If so you may

be having a

> carpal tunnel like problem the nerves going to your feet.

>

>

>

> May your pressure be low!

>

> Clarence E. Grim, BS, MS, MD

> Senior Consultant to Shared Care Research and Consulting, Inc.

> (sharedcareinc.com)

> Clinical Professor of Internal Medicine and Epidemiology Med. Col.

WI

> Clinical Professor of Nursing, Univ. of WI, Milwaukee

>

> Specializing in Difficult to Control High Blood Pressure

> and the Physiology and History of Survival During

> Hard Times and Heart Disease today.

>

>

>

> **************************************

> See what's free at http://www.aol.com.

>

>

>

[Guest guest]

There are rare reports of PA adenomas in the ovary, brain etc.

Most likely I think is the fact that long standing PA has sensitized the pt

so exogenous MC give to replace MC when both adrenals are gone. Many will not

require and MC replacement in my experience (n of about 10 total ADXs in PA

or variants).

May your pressure be low!

Clarence E. Grim, BS, MS, MD

Senior Consultant to Shared Care Research and Consulting, Inc.

(sharedcareinc.com)

Clinical Professor of Internal Medicine and Epidemiology Med. Col. WI

Clinical Professor of Nursing, Univ. of WI, Milwaukee

Specializing in Difficult to Control High Blood Pressure

and the Physiology and History of Survival During

Hard Times and Heart Disease today.

**************************************

See what's free at http://www.aol.com.

[Guest guest]

My BP was running 210/120 and I was very ill. It was not controlled with

HCTZ, a beta blocker and an ace inhibitor. After parathyroid surgery, it

pretty much normalized. Now, trying to take any T3 (thyroid) shoots BP back

up again.

Val

From: hyperaldosteronism

[mailto:hyperaldosteronism ] On Behalf Of lowerbp2@...

Most of the studies we have reviewed were not very good from the BP point of

view. Not well controlled and not good followup . In the one we did on a few

patients we did not find any improvement of BP when we had many well done

BPs

before and after surgery.

[Guest guest]

I always took the meds as directed both before and after. Within a few weeks,

doc dropped the BB. Couple of weeks later, told me to stop the Zestril. I

found a marked improvement in anxiety when the Zestril was dropped. Probably

six months later, as I was tapering off the HCTZ, gyn told me to just drop it.

I was already at 1/2 (12.5 mg) pill. BP was at about 120/70 by then and

remained normal until I tried increasing my T3 (thyroid). For some reason, my

T3 is always low and I'm convinced that is part of my weight problem.

Diet did not change but I dropped 10 lbs after PTH surgery, probably as a result

of being able to move a bit. Prior to surgery, I couldn't make it around my 1/2

mile block without stopping several times to bend over and take the weight off

my back. Within 12 hours of surgery, I was able to sit squarely on my tail

bone, something I hadn't been able to do for several years. All through those

years (14), I had an official diagnosis of ankylosing spondylitis and took

NSAIDS for the pain. A brilliant rheumatologist finally figured out what was

actually wrong.

I have no idea whether my BP was measured correctly. I do remember the gyn's

person having a straight-back, comfortable chair to sit in rather than the exam

table. It was, however, measured by many different people as I went through

five PCPs and two endos, trying to find some way to get the HMO to allow

surgery.

I researched HPT quite a bit back then (1999). My own research is what gave me

the drive to keep looking until the HMO couldn't deny me. I think I remember

something suggesting that BP may improve with PT surgery. I'll look back in my

files and see if I can find anything.

Val

From: hyperaldosteronism

[mailto:hyperaldosteronism ] On Behalf Of lowerbp2@...

I also assume that after PT surgery:

1. You medicines did not change and were stopped?

2. You diet did not change?

3. You did not decide to take your meds more regulaly after surgery as you

did not want to do that again?

BP was measured properly for some time before and after the surgery to

document that it got better?

Any of the above will influence the interpretation that PT surgery cured your

high blood pressure.

In a message dated 4/30/07 12:24:49 PM, val@... <mailto:val%40wyosip.com>

writes:

>

> My BP was running 210/120 and I was very ill. It was not controlled with

> HCTZ, a beta blocker and an ace inhibitor. After parathyroid surgery, it

> pretty much normalized. Now, trying to take any T3 (thyroid) shoots BP back

> up again.

[Guest guest]

On the average it is not better but you may have had an advanced form of the

disease. Was there only on tumor? Adenoma.

May your pressure be low!

Clarence E. Grim, BS, MS, MD

Senior Consultant to Shared Care Research and Consulting, Inc.

(sharedcareinc.com)

Clinical Professor of Internal Medicine and Epidemiology Med. Col. WI

Clinical Professor of Nursing, Univ. of WI, Milwaukee

Specializing in Difficult to Control High Blood Pressure

and the Physiology and History of Survival During

Hard Times and Heart Disease today.

**************************************

See what's free at http://www.aol.com.

[Guest guest]

Might want to look at this one as well

104. Ganguly A, Weinberger MH, Passmore JM, Caras JA, Khairi RM, Grim CE,

Edmonson J, and ston CC. The renin-angiotensin-aldosterone system and

hypertension in primary hyperparathyroidism. Metabolism 1982;31:595-600.

May your pressure be low!

Clarence E. Grim, BS, MS, MD

Senior Consultant to Shared Care Research and Consulting, Inc.

(sharedcareinc.com)

Clinical Professor of Internal Medicine and Epidemiology Med. Col. WI

Clinical Professor of Nursing, Univ. of WI, Milwaukee

Specializing in Difficult to Control High Blood Pressure

and the Physiology and History of Survival During

Hard Times and Heart Disease today.

**************************************

See what's free at http://www.aol.com.

[Guest guest]

I don't have any of my old articles but did find this one on Medscape.

Val

http://www.medscape.com/medline/abstract/8778153

Intracellular calcium and blood pressure: comparison between primary

hyperparathyroidism and essential hypertension.

<http://www.medscape.com/medline/publicationbrowser/123?pmid=8778153> J

Endocrinol Invest. 1995; 18(11):827-32 (ISSN: 0391-4097)

Fardella C; -Portales JA

Department of Endocrinology, Metabolism and Nutrition, School of Medicine,

P. Catholic University of Chile, Santiago, Chile.

Intracellular calcium has been reported to be increased in essential

hypertension, and thought to play a role in its genesis through facilitation

of vascular smooth muscle contraction. Since hypertension is more prevalent

in primary hyperparathyroidism, intracellular calcium may also be increased

in this condition. To investigate whether the hyperparathyroid condition,

i.e., hypercalcemia and increased PTH per se, could be associated with high

intracellular calcium, we measured intracellular calcium in platelets with

the Quin-2 AM fluorometric method in 11 normotensive patients with primary

hyperparathyroidism, 15 patients with essential hypertension, and 18 normal

controls, all matched for age and sex. We repeated the measurements in 9 of

the hyperparathyroid patients after successful surgery. We found that

intracellular calcium was higher in normotensive patients with primary

hyperparathyroidism than in normal controls (198 +/- 24 vs 113 +/- 11 nM, p

< 0.05), but lower than in patients with essential hypertension (198 +/- 24

vs 286 +/- 38 nM, p < 0.05). Successful removal of a parathyroid adenoma

decreased intracellular calcium from 215 +/- 22 to 116 +/- 19 nM, (p <

0.01). In the patients with primary hyperparathyroidism, intracellular

calcium was strongly correlated with the levels of PTH (r = 0.87, p < 0.01),

but not with the total serum calcium levels (r = 0.04, NS). The decrease in

intracellular calcium after parathyroidectomy was also strongly correlated

with the decrease in PTH (r = 0.84, P < 0.01), but not with the decrease in

total serum calcium (r = 0.16, NS). In the patients with essential

hypertension, intracellular calcium correlated well with systolic (r = 0.69,

p < 0.01), diastolic (r = 0.76, p < 0.01) and especially mean arterial

pressure (r = 0.86, P < 0.01). There was no correlation between blood

pressure and intracellular calcium in the patients with primary

hyperparathyroidism. We conclude that normotensive patients with primary

hyperparathyroidism, as well as patients with essential hypertension, can

have increased concentrations of intracellular calcium in platelets. The

correction of the hyperparathyroid condition normalizes intracellular

calcium concentration. The close correlation between PTH and intracellular

calcium suggests that PTH may act as a ionophore for calcium entry into

cells. Whether the increased levels of intracellular calcium may reflect a

pre-hypertensive condition in normotensive patients with primary

hyperparathyroidism remains to be determined.

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http://www.medscape.com/medline/absract/8193726Bottom of Form

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Expression of parathyroid hypertensive factor in hypertensive primary

hyperparathyroid patients.

<http://www.medscape.com/medline/publicationbrowser/123?pmid=8193726> Blood

Press. 1993; 2(1):22-7 (ISSN: 0803-7051)

Lewanczuk RZ; Pang PK

Department of Medicine, University of Alberta, Edmonton, Canada.

Hypertension is frequently associated with primary hyperparathyroidism, yet

the mechanism of such hypertension is unknown. Parathyroid hypertensive

factor (PHF) is a circulating hypertensive factor found in a proportion of

human essential hypertensive patients as well as in spontaneously

hypertensive rats (SHR). In the latter case, PHF has been shown to be

secreted by the parathyroid gland. The purpose of this study was to

determine if PHF expression might be responsible for the hypertension seen

in primary hyperparathyroidism. Ten hypertensive and 10 normotensive primary

hyperparathyroid patients underwent measurement of blood pressure and PHF

pre- and post-parathyroidectomy. Cases reported are those of parathyroid

adenomas. There were no significant differences between the hypertensive and

normotensive groups preoperatively except that 9 out of 10 of the

hypertensive group had significant PHF levels (mean 11 +/- 2 mm Hg vs 0.6

+/- 2 mm Hg, respectively, p = 0.003). Post-operative change in mean

arterial pressure could be predicted by pre-operative PHF level, with all

PHF-positive patients showing a fall in blood pressure (r = -0.73, p <

0.01). Post-operatively, PHF was undetectable in PHF-positive patients.

These results suggest that the parathyroid gland can express PHF in humans

and that such expression may be responsible for a proportion of the high

reported incidence of hypertension in primary hyperparathyroidism.

[Guest guest]

>

> Shotzie, Where did you have your surgery? How large was your

tumor? I have just had a ct scan and they found a tumor 2.2

centimeters in my adrenal gland. The doctor just wants to monitor

for now. I am on 50 ml of spirolactone and 25 of procardia and

postassium suppliments (20 MEQ/day). My blood pressure is under

control with medication, but I have tingling in feet and hand that

keep me up at night, also muscle fatigue after exercise. Did they

remove the whole adrenal gland? dJ

Debra

I had my surgery Oct 2006 at University Hospital in Syracuse.

I had to wait two months for my HMO to approve the surgery, I am no

longer with them.

I had been through 13 years of blood pressure treatment that had

never adequately controlled my BP for very long or caused intolerable

side effects or allergic reactions.

Also I developed hypokalemia January 2004 and kept adding to a list

of symptoms that made me so ill I had cut down my work hours and then

quit my job. I had over 50 doctor appointments in both 2005 and 2006

before someone finally put it all together. I was accused of

allowing stress to make me ill, of being depressed,etc. I was also

told the lack of BP control was my fault, I wasn't eating right,

exercising enough etc. Even when I got really strict and lost 27 lbs

with no effect on my BP except that it kept rising I was still told

it was something I was doing to cause the elevated BP. When the

potassium kept dropping I was told the same thing and also

that " maybe a low potassium is normal for you " Incredible.

I had tried most antihypertensive meds, including Spiro,could

tolerate NONE of them. The spiro did raise my potassium level to 4.3

from 3.1 in only two weeks without supplementation.

Off the spiro the potassium ranged 2.9-3.4, I had to take 80 meq of

potassium per day plus the low NA, High K diet to keep my serum K at 4

Surgery was not taken lightly, but other options had been tried and

failed. I strongly felt it was the way to go and it has proven to be

a miracle for me, just as Jeff, another member, has said.

The energy I have now is like I am 20 years younger. I have no pain,

I do not suffer after exercise, I can travel again, work again, think

clearly again. My mood is so much better, I am calmer, more " even " .

Not ONE headache since the surgery, not one foot cramp, no leg

fatigue, and my job requires me to be on my feet all day. That

fibromyalgia DX was a crock for me, all my joint, muscle ,tendon

aches are gone, I haven't had a back pain or spasm, my chronic left

knee effusion is gone and I have no pain in that knee after exercise

like before. My body can again heal itself, it was disintegrating

before. I also had weird skin breakouts on my thighs, buttocks

shoulders and upper arms for over 3 years which magically disappeared

post op, and quickly!

I would say all symptoms are gone EXCEPT those I suffer from

ovulation-menses(PMS), but even those are dramatically reduced.

I still follow a low sodium diet, I do note an increase in my

systolic numbers if I eat something with more salt than usual.

Also around the time of my menses I tend to hold more fluid and have

a slight increase in systolic

Overall my BP is in the low 130s to the high 70s.

I am aware that after a " cure " the HTN can return. I am doing my best

to prevent that from happening by diet, exercise, stress reduction.

The " insulin resistance " is bumming me out because I feel the effort

I am putting in should pay off but only time will tell what will

happen. Sometimes we can only delay the genetic tendencies we

inherit but I will go down fighting!

I have a life again, I feel the surgery was the right thing for me to

do but it may not be the answer for everyone else. I researched to

death and also trusted my instincts on what to believe and who to

trust after having trusted my physicians to be looking out for me

for so many years. They weren't.

I now am not afraid to challenge and question, too bad if they don't

like it.

[Guest guest]

In a message dated 5/1/07 3:38:58 PM, shotzie@... writes:

> have a life again, I feel the surgery was the right thing for me to

> do but it may not be the answer for everyone else. I researched to

> death and also trusted my instincts on what to believe and who to

> trust after having trusted my physicians to be looking out for me

> for so many years. They weren't.

>

You are the classic reason for my joy of finding that a patient has the

" golden " tumor causing all these problems. When I first started in this

business

It took up to 14 days in hospital for testing and we did not have ways to

localize the tumors. Usually explored both sides from the back a surgery which

is hugh surgery.

Keep up poste and spread the word!

May your pressure be low!

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[Guest guest]

Dear Annette,

I don't know if this will help you, but I recall being surprised about

five years ago when I broke out in a light sweat all over about 30-40

minutes into a coached Pilates workout. I'm one of those " never

sweats " people also, so I was astonished. And I wasn't pushing hard on

the exercises, either, I was doing a light to moderate workout, not an

extreme one.

The thing I like about Pilates is (if it's properly done) it's very

well-balanced, doesn't stress one part a lot more than any other. Now,

since then I became more ill and stopped the Pilates sessions, then

gained some ground and have worked back up to about 30 minutes per

session, once or twice a week. So whether or not it would help you

sweat I suppose depends on where you are in being able to do the

exercises. But if you're looking for a way to exercise, you could

start with 5 minutes per session, which is what I did when I started

up again.

Best wishes,

Marcia on

in Salem, Massachusetts

>

> Thanks Rich,

>

> For all of you hard work and the continuing interest in CFS.

>

> Do they have any ideas in the book for how to start sweating again?

I stopped sweating over 10

> years ago.

>

> Kindest regards,

> Annette

>

>

>

> __________________________________________________________

> Sent from .

> The World's Favourite Email http://uk.docs./nowyoucan.html

>

[Guest guest]

Thanks Marcia and for the ideas.

Marcia, Pilates is out for me (like all exercise) as I am exercise intolerant

due to M.E. I tried

Pilates about 8 years ago when I was well enough to attempt something very

gentle and it

demolished me like all exercise. Even brushing my hair weakens me badly now.

, I am lucky enough to live in an apartment complex with a FIR sauna

installed in the Gym. I

tried this one winter when the cold was really getting into my bones and I

didn't sweat - I just

got redder and redder. I may give it another go now. Any further tips for

getting to the sweating

stage in this would be very welcome.

Rich - if there is anything new in the book for we " non-sweaters " I'd love to

know. The suspected

" detox " part or " herx " part of any treatment usually makes me much worse.

Kindest regards,

Annette

__________________________________________________________

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[Guest guest]

Annette

I wrote a comment about the sweating to your response in rich's thread

about it.

I mentioned that if I did work hard enough or get hot enough to sweat,

its not good=flareup coming.(NOw that I ponder this though,I think

that most of the time I just don't sweat much though even if in hot

temperature).

So I suspect the answer isn't to get yourself to sweat, but to

understand why we arent sweating as perhaps its a defense protective

mechanism. I dont understand methylation and all that though, could it

be as simple as that I am getting rid of toxins when I sweat so its

like a herx/healing crisis? I have mixed feelings though about the

wisdom of pushing things to the point of flareup.

>

> Thanks Marcia and for the ideas.

>

> Marcia, Pilates is out for me (like all exercise) as I am exercise

intolerant due to M.E. I tried

> Pilates about 8 years ago when I was well enough to attempt

something very gentle and it

> demolished me like all exercise. Even brushing my hair weakens me

badly now.

>

> , I am lucky enough to live in an apartment complex with a FIR

sauna installed in the Gym. I

> tried this one winter when the cold was really getting into my bones

and I didn't sweat - I just

> got redder and redder. I may give it another go now. Any further

tips for getting to the sweating

> stage in this would be very welcome.

>

> Rich - if there is anything new in the book for we " non-sweaters "

I'd love to know. The suspected

> " detox " part or " herx " part of any treatment usually makes me much

worse.

>

> Kindest regards,

> Annette

>

>

>

>

> __________________________________________________________

> Sent from .

> The World's Favourite Email http://uk.docs./nowyoucan.html

>

[Guest guest]

>

> Thanks Marcia and for the ideas.

>

> Marcia, Pilates is out for me (like all exercise) as I am exercise

intolerant due to M.E. I tried

> Pilates about 8 years ago when I was well enough to attempt

something very gentle and it

> demolished me like all exercise. Even brushing my hair weakens me

badly now.

Hi Annette,

You certainly are the only one that really knows your limits and I

resent it when well-meaning people (Dr's, etc) tell me all I need is

graded exercise, blah, blah, blah. I hope you are not offended but

I do want to share with you my experience.

When I first got ill in 1999, I was bedridden, could not stand,

could not shower, could not brush my hair, lots of issues including

not sweating. I felt that I had to get moving somehow. So I got on

the floor and did three leg lifts. It just about killed me. I had

to lay there and rest for about a half hour. Then I rolled over,

rested and did three leg lifts on the other side. A couple days

later, did it again. It took about a month to increase to 5 leg

lifts but at least I could do them every night. I added some arm

movements. About two years later, I was walking a mile a day. The

sweating improved (not normal though) and I would shower immediately

after walking to remove toxins excreted. It did not cure me by any

means and I am not at that level of activity now but I felt that I

had improved my functionality which I desperately needed as I am a

single mom and my son was 9 at that time.

I consider myself exercise intolerant and am not

recommending " exercise " but I do recommend moving your limbs a

little each day. I am not talking about 30 minutes 3 times a week or

even 10 minutes every day - I am talking 30 seconds a day or even

less. Our lymph system works by the gentle movements we make each

day which is good for the elimination of toxins. You may feel worse

at first but then you may feel better than before - like most of us,

anything for an extra 5% functionality.

Just a thought....

Marti

[Guest guest]

Hi Marti,

I've built up exercise through very small increments like you described many

times over the past

decades. It doesn't work like that (sadly) for me. Makes me worse everytime.

Small gains are lost.

I'm the survivor of 2 graded exercise programs so appreciate your sensitivity.

For people with M.E (as described by Ramsay) exercise doesn't build up. It's a

real pity. Hallmark

of the disease and very well described by M.E. experts.

Rather than helping even trying to build up simple movements makes me very weak

and sore. Even

small amounts over years - been there many times.

I think that it's great that you had the tenacity and determination to do this.

It must be very

hard to cope with a son.

Kindest regards,

Annette

__________________________________________________________

Sent from .

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[Guest guest]

I sympathise with you Annette. I tried the gradual program of exercise too, over

8 years, and eventually, with just a little hint of jubilance, worked up to

several long walks a day, and even an 8km bush walk. Then began the slide and I

found myself worse than ever,where I've remained for almost 4 years. I've

learned the hard way and now, having a much better understanding of the biology

of this disease, prefer to live a very quiet, healing life.

Re: Re: sweating

Hi Marti,

I've built up exercise through very small increments like you described many

times over the past

decades. It doesn't work like that (sadly) for me. Makes me worse everytime.

Small gains are lost.

I'm the survivor of 2 graded exercise programs so appreciate your sensitivity.

For people with M.E (as described by Ramsay) exercise doesn't build up. It's a

real pity. Hallmark

of the disease and very well described by M.E. experts.

Rather than helping even trying to build up simple movements makes me very

weak and sore. Even

small amounts over years - been there many times.

I think that it's great that you had the tenacity and determination to do

this. It must be very

hard to cope with a son.

Kindest regards,

Annette

__________________________________________________________

Sent from .

The World's Favourite Email http://uk.docs./nowyoucan.html

[Guest guest]

Exercise of any sort has always made me much worse aswell. Infact it was trying

to exercise that (amongst one or two other things) caused me to become bed

ridden when I was at my worst. I have found that exercise can only be

increased if your health improves through some treatment.

Re: Re: sweating

Hi Marti,

I've built up exercise through very small increments like you described many

times over the past

decades. It doesn't work like that (sadly) for me. Makes me worse everytime.

Small gains are lost.

I'm the survivor of 2 graded exercise programs so appreciate your sensitivity.

For people with M.E (as described by Ramsay) exercise doesn't build up. It's a

real pity. Hallmark

of the disease and very well described by M.E. experts.

Rather than helping even trying to build up simple movements makes me very

weak and sore. Even

small amounts over years - been there many times.

I think that it's great that you had the tenacity and determination to do

this. It must be very

hard to cope with a son.

Kindest regards,

Annette

__________________________________________________________

Sent from .

The World's Favourite Email http://uk.docs./nowyoucan.html

[Guest guest]

Hi Annette

It took me quite a few weeks of FIR saunas to sweat when I first started them

and I had a bit of a detox reaction from them before I started sweating but in

time I found they helped me quite a bit. Mainly with sinusitis problems but

overall they did help a bit with most of my symptoms. Since doing the saunas I

will even sweat in hot weather which I never did before

Re: Re: sweating

Thanks Marcia and for the ideas.

Marcia, Pilates is out for me (like all exercise) as I am exercise intolerant

due to M.E. I tried

Pilates about 8 years ago when I was well enough to attempt something very

gentle and it

demolished me like all exercise. Even brushing my hair weakens me badly now.

, I am lucky enough to live in an apartment complex with a FIR sauna

installed in the Gym. I

tried this one winter when the cold was really getting into my bones and I

didn't sweat - I just

got redder and redder. I may give it another go now. Any further tips for

getting to the sweating

stage in this would be very welcome.

Rich - if there is anything new in the book for we " non-sweaters " I'd love to

know. The suspected

" detox " part or " herx " part of any treatment usually makes me much worse.

Kindest regards,

Annette

__________________________________________________________

Sent from .

The World's Favourite Email http://uk.docs./nowyoucan.html

[Guest guest]

Hi, Annette.

I will offer some comments about what I think might be behind the

problemn of inability to sweat, and you can decide whether you think

they apply to your case.

My best guess is that low circulating blood volume is what accounts

for this problem in ME/CFS. When the blood volume is low, the

sympathetic nervous system adjusts the flow to various parts of the

body to make sure the vital organs receive enough perfusion. Skin is

low on the priority list, so they receive less blood flow. With less

blood flow to the skin, I think it inhibits sweating in order to

conserve water.

Other symptoms that may accompany this situation are dry skin and

intolerance of temperature changes, since blood flow to the skin are

important for these as well.

So what causes the low blood volume? I think that many people with

ME/CFS have a (usually " mild " ) case of central diabetes insipidus

(not the same as the more familiar diabetes mellitus, that involves

blood sugar and insulin). Central diabetes insipidus is caused by

too low a rate of secretion of arginine vasopressin (aka antidiuretic

hormone) by the pituitary gland. In my hypothesis for the

pathophysiology of ME/CFS, this results from depletion of reduced

glutathione in the cells of the hypothalamus, where this hormone is

actually synthesized, though it is released into the blood stream

from the pituitary.

Central diabetes insipidus is usually accompanied by excessive daily

urine volume (more than about 2.5 liters per day), and constant

thirst. A person with this disorder drinks a lot of fluid, but still

can't keep up with the loss into the urine, so they operate in a

hypovolemic state constantly.

So what can be done about this? The conventional approach is to

drink more water, accompanied by more salt intake, and some also

prescribe fludrocortisone. I don't favor that approach. My current

hypothesis is that there is a partial block of the enzyme methionine

synthase, in the methylation cycle, and this is what causes the

glutathione level to stay too low, by a vicious circle mechanism.

The " simplified treatment approach " that I proposed (with Trina's

help) is directed at correcting this problem. Since our moderator

has asked that this be discussed in the CFS-Yasko group, rather than

here, I refer you there for details. In the files section of that

group are the things I've written about it, and the July 18, 2007

update is the most current.

I hope this helps.

Rich

>

> Thanks Marcia and for the ideas.

>

> Marcia, Pilates is out for me (like all exercise) as I am exercise

intolerant due to M.E. I tried

> Pilates about 8 years ago when I was well enough to attempt

something very gentle and it

> demolished me like all exercise. Even brushing my hair weakens me

badly now.

>

> , I am lucky enough to live in an apartment complex with a FIR

sauna installed in the Gym. I

> tried this one winter when the cold was really getting into my

bones and I didn't sweat - I just

> got redder and redder. I may give it another go now. Any further

tips for getting to the sweating

> stage in this would be very welcome.

>

> Rich - if there is anything new in the book for we " non-sweaters "

I'd love to know. The suspected

> " detox " part or " herx " part of any treatment usually makes me much

worse.

>

> Kindest regards,

> Annette

>

>

>

>

> __________________________________________________________

> Sent from .

> The World's Favourite Email http://uk.docs./nowyoucan.html

>