Wrong diagnosis?

[Guest guest]

Hi, Sylvie.

The author of the Krysalis site, Dr. Gregg, is an old friend

and former coworker of mine. I am familiar with his ideas about

chronic fatigue syndrome, having discussed them at some length with

him.

First, let me reiterate that the population that satisfies the CFS

and/or FM criteria is a heterogeneous population. What applies to

one PWC doesn't necessarily apply to another. So Dr. Gregg's

hypothesis may fit some PWCs, but not others.

Dr. Gregg cites a talk by Scroop of Australia, in which he

reports elevated lactic acid in PWCs. However, in later published

work, Scroop and coworkers did not find these results in all the

patients they tested. I think the reason is that this population is

very heterogeneous, and it's necessary to look at the details of

individual cases in order to try to understand what's going in each

of them. Until we can separate the population of PWCs into subsets

in a clear way, this is unfortunately the situation.

In my opinion, " pure " CFS and " pure " fibromyalgia are quite

different, though many people satisfy both sets of criteria and

appear to have both.

I find it very interesting that you are low in lactic acid and that

you benefit from taking pyruvate. This suggests that your body is

not able to produce pyruvate at the rate it should, but that once it

has pyruvate, it is able to derive energy from it. That suggests

that you have a problem with your glycolysis, but not with your

Krebs cycle or respiratory chain. I haven't understood fibromyalgia

very well in the past, having focused on CFS. In CFS, there very

definitely is a problem with the oxidative metabolism (Krebs cycle

and respiratory chain) in many PWCs. I doubt whether many PWCs

would benefit from taking pyruvate. In fact, I think it might make

them feel worse. I wonder if other PWFs find that pyruvate helps

them. (I'm talking about people with " pure " fibromyalgia, who do

not meet the CFS criteria.)

Rich

> I read the following on Krysalis site:

>

> " Chronic Fatigue is caused by restricted aerobic metabolism, the

primary

> source of energy for almost all normal cells. This not only reduces

> available cellular energy, but it also promotes excess anaerobic

metabolism.

> The reduced cellular energy translates into reduced body energy.

The

> resulting excess anaerobic metabolism results in the production of

excess

> lactic acid. This lactic acid is what causes the muscle pain

associated with

> Fibromyaligia. This explains why these two diseases, which are

always found

> together, are considered to be different faces of the same

disease. "

>

> and further:

>

> " Chronic Fatigue and Lactic Acid Buildup: The following

information was

> supplied as a handout at the 7 November (2000) talk given by

Professor

> Scroop at the AGM of the ME/Chronic Fatigue Syndrome Society of

.

>

> In this talk/handout, Dr. Scroop described their experiments with

CFS

> patients with a cycle exercise test. Briefly, they discovered that

using

> this exercise test, blood tests for CFS patients showed a distinct

abnormal

> lactate response. The CFS patients released more lactic acid into

the blood

> than the healthy control subjects sometimes twice as much.

>

> These results present critically important evidence supporting the

theory

> presented here. Thus, the measurements are vital, if not

conclusive,

> evidence of the theory's validity. The theory also claims that

this lactic

> acid buildup is the cause of the pain of fibromyalgia. "

>

>

> I had those tests, and was found to build-up about three-four

times less

> lactic acid than what should be expected, and I am diagnosed FM.

>

> Is this theory accurate, or is this just a theory that hasn't been

verified

> on a large amount of people?

>

> If so, I don't have FM, but something else. In fact one of my

favorite

> supplement is pyruvate because it gives me some more strength,

helping to

> produce lactic acid. But I can't use it on a regular basis,

because if I

> don't have enough physical activity I put on more weight with it.

>

> Sylvie

[Guest guest]

Hi, Sylvie.

One more thing. The fact that you gain weight when you take

pyruvate without getting enough exercise shows that your liver able

to carry out gluconeogenesis well. That is the conversion of

pyruvate, lactate, alanine and glutamine to glucose. When a person

doesn't burn all their glucose, the pancreas normally raises its

output of insulin until the extra glucose is pushed into the liver

and fat cells, and is converted to stored fat.

Many PWCs have this experience if they eat a significant amount of

carbohydrates. In their cases, the partial blockade in the Krebs

cycle causes a rise in pyruvate or lactate, and the extra is routed

back to the liver via the blood and is converted to glucose via

gluconeogenesis. This is put back into the blood, and it adds to

the glucose coming in from carbohydrate ingestion. They are unable

to burn the glucose completely to carbon dioxide and water, so it

just keeps building up in the blood in this way, until the rising

insulin pushes it into the liver and fat cells, making stored fat.

Are you able to tolerate carbohydrates?

Rich

> > I read the following on Krysalis site:

> >

> > " Chronic Fatigue is caused by restricted aerobic metabolism, the

> primary

> > source of energy for almost all normal cells. This not only

reduces

> > available cellular energy, but it also promotes excess anaerobic

> metabolism.

> > The reduced cellular energy translates into reduced body energy.

> The

> > resulting excess anaerobic metabolism results in the production

of

> excess

> > lactic acid. This lactic acid is what causes the muscle pain

> associated with

> > Fibromyaligia. This explains why these two diseases, which are

> always found

> > together, are considered to be different faces of the same

> disease. "

> >

> > and further:

> >

> > " Chronic Fatigue and Lactic Acid Buildup: The following

> information was

> > supplied as a handout at the 7 November (2000) talk given by

> Professor

> > Scroop at the AGM of the ME/Chronic Fatigue Syndrome Society of

> .

> >

> > In this talk/handout, Dr. Scroop described their experiments

with

> CFS

> > patients with a cycle exercise test. Briefly, they discovered

that

> using

> > this exercise test, blood tests for CFS patients showed a

distinct

> abnormal

> > lactate response. The CFS patients released more lactic acid

into

> the blood

> > than the healthy control subjects sometimes twice as much.

> >

> > These results present critically important evidence supporting

the

> theory

> > presented here. Thus, the measurements are vital, if not

> conclusive,

> > evidence of the theory's validity. The theory also claims that

> this lactic

> > acid buildup is the cause of the pain of fibromyalgia. "

> >

> >

> > I had those tests, and was found to build-up about three-four

> times less

> > lactic acid than what should be expected, and I am diagnosed FM.

> >

> > Is this theory accurate, or is this just a theory that hasn't

been

> verified

> > on a large amount of people?

> >

> > If so, I don't have FM, but something else. In fact one of my

> favorite

> > supplement is pyruvate because it gives me some more strength,

> helping to

> > produce lactic acid. But I can't use it on a regular basis,

> because if I

> > don't have enough physical activity I put on more weight with it.

> >

> > Sylvie

[Guest guest]

In a message dated 11/11/07 4:02:59 PM, mmcandmcc@... writes:

>

> I'm still not convinced I have the correct diagnosis and I have a

> follow up with the endo tomorrow. What questions do I need to ask?

>

> I

> don't understand how my BP was under control for about a month and then

> went way out of control again.

>

What drugs were you on and did you have a big salt load in your diet.--say

traveling, reunion etc?

PA patients are very salt sensitive. Indeed if you lower your sodium intake

and increase your K intake enough you will not have high blood pressure if

you have PA.

The body requires excess diet salt and excess aldo to cause high blood

pressure.

> Could the lab have made a mistake on

> the initial blood work that said I have high aldostorone, low renin.

> Is there a wrong way to do the test?

>

Always possible that the lab made a mistake, mixed up samples etc.

The meds (any thing you take including herbs) you were on, the diet you were

on, the time of day, and your menstrual cycle can all affect the renin and

aldosterone.

You should ask for the nomral values from that lab and what values has the

Endo seen in the cases of PA he has managed from this lab.

> Why would the 24 hour urine come

> back normal.

>

A normal urine aldo after salt loading in a person with low renin and high

blood aldo is really abnormal unless it went down to nearly zero.

Did you collect every drop of urine? If you missed say 1/4 of it your result

may be normal.

Again ask for their " normal values " and what he has seen in proven cases of

PA he has managed.

It depends on what level they have set as normal and what phase you are in in

the evolution of primary aldosteronism. If they use 20 as the upper limit

of normal for urine aldo they are out of date.

Please please read and take my article on the evolution of PA so you and he

has a better grasp of the problem.

The next step would be so see how your BP responds to spiro. Have you been

tried on it?

>

>

>

>

>

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 new at http://www.aol.com

[Guest guest]

In a message dated 11/11/07 4:37:53 PM, blundell142@... writes:

> hi michelle.

> from a personal point of view, test can be done wrong. i had the 24 hr

> unrine test done and it came back okay... i had the conns test done too, the

first

> two times this was done wrong until i ended up at hull hospital where it was

> done correctly. the correct way i was told was: you go in and lay on a bed

> for half an hour, they take blood, your then go about your business for the

> next 4 hours, you then return and have bloods taken again.. (when i returned

to

> the hossie i had to walk up and down for 10 mins) i believe this is how they

> measure the levels.

> rose

>

The key is to do it exactly the way the lab used to determine what is normal.

In some it is supine overnight, in others after out of be for 2-4 hours.

others after a saline infusion test and then one day of a low sodium diet and

give 3 doses of Laxix (The Weinberger Grim protocol) which I think is the best

but we cant put people in the hospital anymore for testing properly.

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

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

[Guest guest]

hi michelle.

from a personal point of view, test can be done wrong. i had the 24 hr unrine

test done and it came back okay... i had the conns test done too, the first two

times this was done wrong until i ended up at hull hospital where it was done

correctly. the correct way i was told was: you go in and lay on a bed for half

an hour, they take blood, your then go about your business for the next 4 hours,

you then return and have bloods taken again.. (when i returned to the hossie i

had to walk up and down for 10 mins) i believe this is how they measure the

levels.

rose

wrong diagnosis?

I'm still not convinced I have the correct diagnosis and I have a

follow up with the endo tomorrow. What questions do I need to ask? I

don't understand how my BP was under control for about a month and then

went way out of control again. Could the lab have made a mistake on

the initial blood work that said I have high aldostorone, low renin.

Is there a wrong way to do the test? Why would the 24 hour urine come

back normal.

___________________________________________________________

Want ideas for reducing your carbon footprint? Visit For Good

http://uk.promotions./forgood/environment.html

[Guest guest]

I saw the endo today and he's convinced we have the right diagnosis,

despite the strange lab work. He increased my spiro to 100 mg twice

a day. Since I started this, the top no. of my BP has come down to

the 140-150 range, but the bottom number is still 105-120.

He reviewed the adrenal CT again with the radiologist and said no

tumors, but extra vascular tissue in that area (???) He said it was

something to watch.

I'm a bit frustrated because I don't want to be on this drug long

term.

>

>

> In a message dated 11/11/07 4:37:53 PM, blundell142@... writes:

>

>

> > hi michelle.

> > from a personal point of view, test can be done wrong. i had the

24 hr

> > unrine test done and it came back okay... i had the conns test

done too, the first

> > two times this was done wrong until i ended up at hull hospital

where it was

> > done correctly. the correct way i was told was: you go in and

lay on a bed

> > for half an hour, they take blood, your then go about your

business for the

> > next 4 hours, you then return and have bloods taken again..

(when i returned to

> > the hossie i had to walk up and down for 10 mins) i believe this

is how they

> > measure the levels.

> > rose

> >

>

> The key is to do it exactly the way the lab used to determine what

is normal.

> In some it is supine overnight, in others after out of be for 2-

4 hours.

> others after a saline infusion test and then one day of a low

sodium diet and

> give 3 doses of Laxix (The Weinberger Grim protocol) which I think

is the best

> but we cant put people in the hospital anymore for testing

properly.

>

>

>

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

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

>

>

>

[Guest guest]

Don't just take what she says...see a speacialist...a psychiatrist...someone who specializes in this field...at times I would say my son is bi-polar too...but he isn't. I am sorry but any school PA should not be giving you a dx or telling you your daughter isn't this or that. Actually it sound illegal to me.

Jan

P.S. If it would make you feel better...have her re-evaluated by someone reputatable in the field!

Janice Rushen

"I will try to be open to all avenues of wisdom and hope"

From: pennie831 <pennie831@...>Subject: ( ) wrong diagnosis? Date: Tuesday, April 14, 2009, 6:38 PM

Today my 15 year old daughter saw a nurse practitioner, who works at the guidance center where she gets "talk therapy" Now, after meeting her for one hour, has told me that she does not have aspergers, but she is borderline bi polar... ??? what test should she have given her, all she did was interview her and ask thesame old questions, HELP

[Guest guest]

I have found that all the PhD therapists we have seen are cautious and

do not give this DX. There is so much overlap between disorders

most disoders have emotional control issues, irritablity.

This is seen in BP, AS, OCD, anxiety. Most kids that are so wrapped

up trying to control themselves have issues with social

cognition.

Unless your daughter truely has a very clear manic episode, is clearly

taking extreme risks of her life, jumping off buildings because she

can fly, rage that scares you and your families safety and a clear sustained

depressed phase it not easy to DX bi-polar in kids.

Almost 6 years ago a therapist told me to stop looking for the

DX and treat the symptoms. There is some truth in that.

I am glad we did the neuropsch tests and at some point you

may decide to do a psychitrict evaluation if you think medication

is needed. But we all have to get on with prioritizing

what issues are the most troubling.

Perhaps the school thought social cognition was not the

most troubling behavior and that is why she concluded

an emotional/mood control disoder.

But you have to be careful 1:1 my daughter seems social

and appropriate. This is not a test of AS social

skills. At recess she is a little lost puppy.

You " Mom " have to have a clear sense what do you see as her top

challenges. Is it socializing, is it emotional control,

is it mood issues, is it obessiveness ...

What do you see as her top troubling behaviors?

Pam

>

> Today my 15 year old daughter saw a nurse practitioner, who works at the

guidance center where she gets " talk therapy " Now, after meeting her for one

hour, has told me that she does not have aspergers, but she is borderline bi

polar... ??? what test should she have given her, all she did was interview her

and ask thesame old questions, HELP

>

[Guest guest]

So well said, Pam! Great post. My son was diagnosed w/ a few different things growing up but I never thought they were right. When we got the Aspergers diagnosis, I thought BINGO! but we didn't get that until he was 11 (he's 12 now.) Around the 2nd grade, when he was diagnosed w/ anxiety and we tried meds w/ disasterous consequences, I decided to forget the diagnoses and just focus on the behaviors. One of the best decisions I've ever made in parenting my son.

"Over-optimism is waiting for you ship to come in when you haven't sent one out."

From: susanonderko <susanonderko@...> Sent: Tuesday, April 14, 2009 7:34:29 PMSubject: ( ) Re: wrong diagnosis?

I have found that all the PhD therapists we have seen are cautious and do not give this DX. There is so much overlap between disordersmost disoders have emotional control issues, irritablity. This is seen in BP, AS, OCD, anxiety. Most kids that are so wrappedup trying to control themselves have issues with social cognition. Unless your daughter truely has a very clear manic episode, is clearlytaking extreme risks of her life, jumping off buildings because she can fly, rage that scares you and your families safety and a clear sustained depressed phase it not easy to DX bi-polar in kids. Almost 6 years ago a therapist told me to stop looking for the DX and treat the symptoms. There is some truth in that. I am glad we did the neuropsch tests and at some point youmay decide to do a psychitrict evaluation if you think medication is needed. But we all have to get on with prioritizing what

issues are the most troubling. Perhaps the school thought social cognition was not the most troubling behavior and that is why she concludedan emotional/mood control disoder.But you have to be careful 1:1 my daughter seems social and appropriate. This is not a test of AS social skills. At recess she is a little lost puppy. You "Mom" have to have a clear sense what do you see as her top challenges. Is it socializing, is it emotional control,is it mood issues, is it obessiveness ...What do you see as her top troubling behaviors? Pam >> Today my 15 year old daughter saw a nurse practitioner, who works at the guidance center where she gets "talk therapy" Now, after meeting her for one hour, has told me that she does not have aspergers, but she is borderline bi polar... ??? what test should she have given her, all she did was interview her and ask thesame old questions,

HELP>

[Guest guest]

Um, run quickly to another opinion if you need a diagnosis. That is WRONG! A one-hour one-on-one interview and she comes up with bi-polar? Nope.

"Over-optimism is waiting for you ship to come in when you haven't sent one out."

From: pennie831 <pennie831@...> Sent: Tuesday, April 14, 2009 5:38:17 PMSubject: ( ) wrong diagnosis?

Today my 15 year old daughter saw a nurse practitioner, who works at the guidance center where she gets "talk therapy" Now, after meeting her for one hour, has told me that she does not have aspergers, but she is borderline bi polar... ??? what test should she have given her, all she did was interview her and ask thesame old questions, HELP

[Guest guest]

I would not take it as seriously as it was intended. One hour is not enough time to formulate a dx. Also, did she collect history, go through her medical history as well as talk to her parents and teachers? I bet she did not do any of those things. As much as it is wrong to slap a dx on someone after just an hour, it is also wrong to change their dx after just one hour.

I don't know if this person is right or not. But I would seriously question a one hour dx (in effect, a drive-thru dx really.) Ask questions such as, is this person licensed to dx these things? What is her experience? Does she report to a doctor who goes over her work? What reasons did she give for wanting to change the dx? I would want serious information coming from someone who wants to hand my kid a dx like bi-polar.

Also, who gave the initial dx of AS and how was that done? If she went through an evaluation process, did you feel it was accurate? What do you think?

You can always find an expert to evaluate her again for another opinion if you doubt that her AS dx is accurate. It's your call. But you have to weigh the expertise of the person talking to you and also, the amount of time spent with your dd. One hour is not a lot of time at all. Certainly I would not want my kid dx'd with AS or bi-polar with a one interview. Both are serious dx's.

Roxanna

"Suppose you were an idiot. And suppose you were a member of Congress. But I repeat myself." ~ Mark Twain

( ) wrong diagnosis?

Today my 15 year old daughter saw a nurse practitioner, who works at the guidance center where she gets "talk therapy" Now, after meeting her for one hour, has told me that she does not have aspergers, but she is borderline bi polar... ??? what test should she have given her, all she did was interview her and ask thesame old questions, HELP

No virus found in this incoming message.Checked by AVG - www.avg.com Version: 8.0.238 / Virus Database: 270.11.56/2058 - Release Date: 04/14/09 06:17:00

[Guest guest]

>

> Today my 15 year old daughter saw a nurse practitioner, who works at the

guidance center where she gets " talk therapy " Now, after meeting her for one

hour, has told me that she does not have aspergers, but she is borderline bi

polar... ??? what test should she have given her, all she did was interview her

and ask thesame old questions, HELP

This is not terribly unusual. I'm surprised it has not happened to you before.

Personally, unless the person can give me a good reason to think my son's dx

could be wrong--I ignore them and proceed with life. ALSO, I don't let people

who try to give off the cuff dx in this fashion talk to my son's school!

Ruth

[Guest guest]

Hello all,

Someone had recently posted about their child's slp changing their diagnosis

to a phonological disorder. We have recently had the same experience. My

almost 3 year old has been doing speech therapy x1 year 1 day a week. In feb.

our slp agreed that it was something bigger than we had thought.. originally we

thought he had a speech delay from frequent ear infections and suggested that he

might have apraxia. On feb 8 we started omega 3-6-9 supplements and saw almost

immediately surges..he started using 3 word sentences within 2 days of

initiation of the supplement!! In march we started NV, but we also started

seeing a new speech therapist w/ 15 years of experience w/ apraxic children.

She fixed problems I didn't know he had. We also increased speech therapy from

1-4 days a week. We have seen some amazing gains in him again- in speech

clarity, oodles of new words and more complicated sentences-up to 5 words now.

On my last visit to our therapist she said that Keegan was taking a " more normal

speech development " and that she wonders whether he is truly apraxic? We have

spent 5 weeks w/ this therapist and I don't know if therapy can work that

quickly, but maybe it can w/ the use of fish oils and NV. Whatever the cause, I

am extremely happy to report huge gains in language skill..he even says his name

now! I certainly won't be stopping the NV anytime soon.

[Guest guest]

As children with apraxia make progress--their presentation of the disorder can

change--but this is for treatment purposes----the diagnosis does not change that

readily--unless it was not there to begin with--which can happen--but as always

err-ing on the side of caution and given treatment when apraxia is suspected is

better than waiting to confirm it and only then giving treatment--vital early

intervention time is lost--my SLP just explained thsi to me yesterday and said

that now she is addressing phonological issues more than before--still with

multi-sensory visual cues etc. --but it now presents mostly as a phonological

disorder and this needs to be addressed more--with the phonological methods. My

SLP also explained that in soem cases she cna pick out apraxic kids early

on--even before 1 yr old--oral apraxia but that msot often the verbal apraxia is

part of it too--and doesn't gfget picked up normally until 2 years later a dn

thsi makes it harder

for these kids to be treated properly and timely.

So apraxia can take many forms, it can be profound, severe, moderate or

mild--and with appropriate treatment---therapy and metabolic issues addressed

these kids make HUGE progress at times. HOWEVER<---this does NOT mean the

apraxia is gone---it is still the underlying problem--it is just that as the

brain gains function via therapy the apraxic component improves and less severe

problems are the ones that still remain and need to be addressed.

But be very careful about anybody dropping any apraxia diagnosis--once you do

that--insurance coverage can change--as well as school services etc. So while

it is normal for initial phonological disorders to decrease service as the

patient improves--for apraxia as the undelying and original problem--intensity

should be maintained longer---you do not want progress stalled and apraxic

elements are very likely still present at sentence level, longer multisyllabics

and certain words that require quick repositioning of the tongue and other

speech parts.

So yes, progress does mean more phonological issues appear-more language

problems in moist cases which need to be addressed as well--but if apraxia was

there to begin with--it shoudl still be maintained as a diagnosis until

completely--and I mean completely gone--becuase these children continue to need

intensive 1:1--speech therapy--and giving them less just becuase they are making

progress is not warranted when apraxia was the main problem to begin with. Hope

this helps.

Elena

________________________________

From: kellyallan30 <kellyallan30@...>

Sent: Wed, April 28, 2010 9:19:59 AM

Subject: [ ] Wrong diagnosis?

Hello all,

Someone had recently posted about their child's slp changing their diagnosis

to a phonological disorder. We have recently had the same experience. My

almost 3 year old has been doing speech therapy x1 year 1 day a week. In feb.

our slp agreed that it was something bigger than we had thought.. originally we

thought he had a speech delay from frequent ear infections and suggested that he

might have apraxia. On feb 8 we started omega 3-6-9 supplements and saw almost

immediately surges..he started using 3 word sentences within 2 days of

initiation of the supplement!! In march we started NV, but we also started

seeing a new speech therapist w/ 15 years of experience w/ apraxic children.

She fixed problems I didn't know he had. We also increased speech therapy from

1-4 days a week. We have seen some amazing gains in him again- in speech

clarity, oodles of new words and more complicated sentences-up to 5 words now.

On my last visit to our therapist

she said that Keegan was taking a " more normal speech development " and that

she wonders whether he is truly apraxic? We have spent 5 weeks w/ this

therapist and I don't know if therapy can work that quickly, but maybe it can w/

the use of fish oils and NV. Whatever the cause, I am extremely happy to report

huge gains in language skill..he even says his name now! I certainly won't be

stopping the NV anytime soon.

------------------------------------