Re: Immunohistochemical tests??

[Guest guest]

The Neuro wants to do this as a day case. I tried explaining to him, that after

any minor surgical procedure, I usually worsen to the point of being totally

bedridden, he dismissed it!!!

I will write to him and ask him to let me know exactly what the test entails.

He also said that, if tests were negative, he would recommend CBT. I asked why,

and he said to cope with my illness.

I said I didn't need CBT, and that in any case, to look for mito dysfunction,

tests are not reliable, and that one Immuno test is not sufficient, and there

should be a whole battery of test.

This also fell on deaf ears ....

I am worried about the trend for CFS sufferers being labelled as psychosomatic,

when it is in fact the failur and limitations of allopathic medicine, for not

finding out what is wrong with us.

History repeats itself, it is barbaric and cruel, to dismiss such severe

symptoms on the basic that routine blood tests are normal!! grrrrrr What we

suffer, is probably at cellular level, regardless, we are limited as

classification of diseases. No wonder, stats show 40% of diagnosis are in fact

MisDiagnosis ...

Evidence based medicine, whilst dismissing symptoms, tests and investigations

should only be used as supportive evidence along with medical history and

symptoms. This is not being applied though.

But then again, when tests are abnormal, I am told not to worry about it, hum,

it is evident, that MDs, would rather dismiss our symptoms as psychosomatic than

admitting their own failures!!! Aghhhh.

Kooky

>

> No I haven't had the test but I too am weary of everything I do to try and

help my self. Make sure if you decide to go ahead that you have ALL the facts

about what is going to happen, expected recovery time etc cause if you're like

me the last thing you need from a " test " or " treatment " is to go into a flare or

get worse

>

> ----- Original Message -----

> From: furstc0404

> Has anyone with severe weakness, post exertional malaise, and seriously ill,

as in homebound/bedbound, unable to perform basic physical tests, undergone a

muscle biopsy for immunihistochemical testing? What were the results?

>

[Guest guest]

I still dont understand what the immunohistochemical test means but I definately

understand the being labelled as psychosomatic. I mean I am sure you would

understand that there often is a psychological component of CFS/FM like having

anxiety/depression this does NOT mean the physical symptoms we experience are

all made up but unfortunately a lot of drs think that we are making everything

up. I was treated like ***** in the hospital when I was gravely ill they

questioned everything that I said I had from FM to post viral infection syndrome

to having the medication reaction to the pain to even being deaf!!!! I did not

show them the hearing test but that would have fixed them they said a hearing

test you have to push a button when you hear a noise of well that would have

been easy enough to fake!!! (NOT)

So I understand that one I also understand being bedridden after surgery or from

heatwave or whatever I reckon if you have the test and you cant walk

afterwards/get out of bed (I assume you do this normally) well THAT would show

the neuro and the nurses and everyone else.

----- Original Message -----

From: furstc0404

The Neuro wants to do this as a day case. I tried explaining to him, that

after any minor surgical procedure, I usually worsen to the point of being

totally bedridden, he dismissed it!!!

I will write to him and ask him to let me know exactly what the test entails.

He also said that, if tests were negative, he would recommend CBT. I asked why,

and he said to cope with my illness.

[Guest guest]

Hi

IMHO, there is no psychological component in oganic illness. However, some

people do become depressed or anxious. This is not my case. I doubt that CBT

is going to fix my failing organs, breathlessness, etc ...

Psychologists agree that attitude and coping mechanism are very important in

regards to challenges and issues.

Some have excellent coping mechanism other not, in which case CBT would help

cope with limitations and being ground to a pulp by a system.

The CBT and psychology paradigm is flawed, and certainly used as leverage in the

UK for many who are ill. It is purely political, incidentally, there is a lot

of propaganda and cuts on welfare, specially for those who are disabled and

chronically ill.

CBT according to some psychologists does not work, and recently, there was a

paper published a week or so ago, how CBT does not work for CFS, and even causes

harm,

Concerning mitochondrial testing, these are not reliable, and often,

inconclusive. There needs to be more than a muscle biopsy to exclude acquired

mito disease, but even then, mito dysfunction is not easy to detect.

For instance, serum carnitine might differ from muscle or organ tissue

carnitine. Difficult to establish.

Incidentally, I did Dr Myhill's ADP/ATP test as recommended on her site. It

showed very low ADP/ATP conversion, still, the Neurologist showed no interest.

Incidentally, I did neuro-otology tests which showed chronic vertigo,

hyperacusis, Romberg test showed dysfunction, sensorial hearing loss, spatial

dysfunction etc...

>

> I still dont understand what the immunohistochemical test means but I

definately understand the being labelled as psychosomatic. I mean I am sure you

would understand that there often is a psychological component of CFS/FM like

having anxiety/depression this does NOT mean the physical symptoms we experience

are all made up but unfortunately a lot of drs think that we are making

everything up. I was treated like ***** in the hospital when I was gravely ill

they questioned everything that I said I had from FM to post viral infection

syndrome to having the medication reaction to the pain to even being deaf!!!! I

did not show them the hearing test but that would have fixed them they said a

hearing test you have to push a button when you hear a noise of well that would

have been easy enough to fake!!! (NOT)

[Guest guest]

I have had my hearing tested and the newer equipment uses a sensor so the test

can not be faked.

 

Histimine testing has been around for a long time it is most commonly done by an

Allergist and mainstream medicine still rejects it eventhough they accept

reactions to specific medications.

 

In the last few years naturopath programs have arisen that also test for

allergens but instead of using the skin test they use muscle testing which dates

back to ancient China.

 

I have done both neither were covered by insurance.

[Guest guest]

I agree CBT which I have done in the past not for FM/CFS but for perfomance

anxiety (I play viola) now I have dystonia cannot walk and have to use a

wheelchair which gives me more pain and more fatigue but at least I am mobile. I

think it can help some people with some things but that if they force you to do

this when you dont need/want it its annoying or if you do it and it doesn't help

but continually be lablelled psychogenic or psychosomatic it doesn't help. I had

to do awful rehab last year and all that happened (they thought I was " just

deconditioned " ignored CFS followed solely FM protocols which would not have

worked for every person with FM and it even stated you have to go with the

patient and you have to listen to them she followed only the bits she wanted to

follow. I was seeing a psychologist but since I came out of hospital and wanted

support for depression/anxiety related issues since I had ended up in a

wheelchair have no idea whether its permanent all the changes that go with this

etc etc. My psychologist told me that I did not have any disabilties (I know

there are lots but I am also severely hearing impaired needing Hearing aids and

and FM communication system to hear her) and that I should not try and establish

(by going to a new specialist) what is wrong or how " permanent " it is likely to

be. I mean FM and CFS are typically labelled not permanent but only long term I

know some people totally recover but does that mean they change their lifestyle

to cope with symptoms are still unable to work full time what?? So I have given

up seeing her for now I may see another psychologist in the future I dont know.

I feel upset that you are treated this way.

[Guest guest]

Doe immunohistohemical tests mean allergy testing or something more related to

multiple chemical sensitivity?

----- Original Message -----

From: Eugene Carlson

I have had my hearing tested and the newer equipment uses a sensor so the test

can not be faked.

Histimine testing has been around for a long time it is most commonly done by

an Allergist and mainstream medicine still rejects it eventhough they accept

reactions to specific medications.

[Guest guest]

Hey Kooky,

When you say you worsen with even a minor surgical procedure, do you mean those

with general or local anesthesia? Because there has been a lot of concern from

some specialists that certain surgical anesthetics can cause adverse effects,

even dangerous ones, in CFS patients. The National CFIDS Foundation has a lot

of info on it; you can contact them at: " info@... " ... their website is

www.NCF-NET.org ...

I totally get what you said in your last post! For me, fighting the

'psychosomatic' label has been almost as big a problem as the disease itself!

It is creating horrendous problems for me with my " insurance providers " and I am

at risk of losing my coverage...A lot of people need to be held accountable,

besides just the CDC and the NIH; besides nefarious politics, this all points to

an inability by the medical and psychological establishments to use some

extremely basic scientific principles. These principles flow from simple logic,

but are also taught in any decent undergraduate biology curriculum. I suspect a

lot of doctors either never learned them or had 'em beaten out of them in med

school! To paraphrase Jay Gould: a scientist can never say that a lack

of evidence for one theory proves an alternative theory; that 'alternative'

theory must be subjected to the SAME burden of proof, the same demands for

evidence. How do you PROVE in this manner that an illness is psychosomatic? It

can't be easy, and it certainly hasn't been done for ME/CFIDS or FM. Anyone who

makes that diagnosis for these diseases is not practicing medical science. The

fact that so many nevertheless DO ought to be a major intellectual scandal in

the scientific community.

I definitely understand your concerns about the biopsy/testing your neurologist

proposed. (Btw, have you already had it done?) I assume there is some other

neuromuscular disease he suspects or is trying to rule out, right? Or is this

just on a wing and a prayer?...I myself have been severely debilitated

(housebound/bedridden) for many years, and no one ever suggested a muscle biopsy

(though they might have if I had a lot of pain). I'm not too familiar with

muscle biopsy research in CFS, though some have called for more of it...I don't

think there have been any replicated findings, anyway, and your doc obviously

isn't doing research..Do you know what he is looking for? I once did some

immunohistology myself; if you only have ME/CFIDS, I don't know what they could

possibly find by such testing. (But who knows? Maybe they'll make a

groundbreaking discovery...yeah.)

Anyway, good luck and keep us posted!

Kartik

>

>

> The Neuro wants to do this as a day case. I tried explaining to him, that

after any minor surgical procedure, I usually worsen to the point of being

totally bedridden, he dismissed it!!!

>

> I will write to him and ask him to let me know exactly what the test entails.

He also said that, if tests were negative, he would recommend CBT. I asked why,

and he said to cope with my illness.

>

> I said I didn't need CBT, and that in any case, to look for mito dysfunction,

tests are not reliable, and that one Immuno test is not sufficient, and there

should be a whole battery of test.

>

> This also fell on deaf ears ....

>

[Guest guest]

,

You need to see a FM/CFS/ME specialist ASAP. You are not crazy and " yes "

you are disabled. You are disabled by a disease process that is very, very

real to all of us that " really " have it. I'm sure there are many, many more

that really have this disease than have been diagnosed. The quacks that are

telling you these things and making you feel as if " it's all in your head "

need to be fired by you! Let them go take care of a patient that's easy for

them to take care of.

I feel for you! I felt just like you do and have been treated many times

like you have been treated by medical professionals. BAD! I am a medical

professional! A nurse, 17 years and I have never, ever doubted what a

patient told me they were feeling. A drug seeker even has real pain....the

need for their drug of choice and I have no right to judge and neither do

any other medical professionals you come in contact with. They took an oath

to treat patients with care and compassion. Remind the next one that treats

you in such a manner.

A psychologist is fine to see for depression and anxiety. But, if you see a

specialist for your disease process they will treat that along with the

other debilitating problems of your disease.

I will not give up my fight to feel better for my sake and those that love

me. You write to me any time and I'll help you continue your fight, too!

I've promised positivity by the end of all posts and emails:

Today I am thankful my husband is alive and loves me dearly. He was taken

into emergency surgery yesterday morning for appendicitis. He's painful,

but recovering well!

Hugs to all!

On Mon, Nov 9, 2009 at 7:56 PM, Mckenzie-Christensen <

erinmck@...> wrote:

> I agree CBT which I have done in the past not for FM/CFS but for perfomance

> anxiety (I play viola) now I have dystonia cannot walk and have to use a

> wheelchair which gives me more pain and more fatigue but at least I am

> mobile. I think it can help some people with some things but that if they

> force you to do this when you dont need/want it its annoying or if you do it

> and it doesn't help but continually be lablelled psychogenic or

> psychosomatic it doesn't help. I had to do awful rehab last year and all

> that happened (they thought I was " just deconditioned " ignored CFS followed

> solely FM protocols which would not have worked for every person with FM and

> it even stated you have to go with the patient and you have to listen to

> them she followed only the bits she wanted to follow.

[Guest guest]

Thought I had better clarify something I see a rheumatologist who in this case

is a specialist in pain and especially FM and is aware of the CFS. He is one of

the best in Adelaide BUT I also have dystonia which is only related to the FM dr

because HE gave me meds together that should NOT have been put together which

caused a serotonin reaction and later I was put thru the wrong kind of rehab and

a combination of things led me to get dystonia. It was NOT this dr who thinks I

have a conversion disorder but the drs in the hospital that I was put in when

the dystonia started. It did not stop for 10 days and I honestly did not know

what it was (other than the fact that it was involntry and the other thing that

made it go away was sleep.) It was in fact my rhemy who diagnosed the dystonia

and I am seeing a neurologist soon who will hopefully be able to treat this

condition better than the rhemy can.

Thanks for your concern though it is horrible being treated this way we just

have to find the right person to help us manage. Thing is that no one believes I

will be like this (in a wheelchair permanently) they all are in denial that

something is going on. Finally the other day my neurophysio suggested that I may

have a genetic condition or genetic dystonia even that is underlying everything

else. I think this is a positive step because I just want to KNOW exactly what

is going on with me what to do about it and whether it will or wont go away. We

are young and have our whole lives ahead I want children and I want to go

overseas. Without knowing more about my conditions this would not be possible.

Hope you husband recovers from appendicitis

----- Original Message -----

From:

,

You need to see a FM/CFS/ME specialist ASAP. You are not crazy and " yes "

you are disabled. You are disabled by a disease process that is very, very

real to all of us that " really " have it. I'm sure there are many, many more

that really have this disease than have been diagnosed. The quacks that are

telling you these things and making you feel as if " it's all in your head "

need to be fired by you! Let them go take care of a patient that's easy for

them to take care of.

[Guest guest]

Well said !

 

 We need to stay as positive as possible and fire/quit seeing Drs who are not

supportive or understanding!

 

I am a male and initially became ill at the age of 33 in May of 2003 with

Mononucleosis and was told that it could take 2 years for my Immune system to

" bounce " back. In the mean time I was on a HMO and seeing specialtist to help

with my headaches/sore throat/back pain and digestive issues.

 

I had my digestive tract checked out from top to bottom. Camera's down my nose

to see the Chronic Pharyngitis, endoscopy to rule out acid reflux etc? causing

the sore throat. Colonoscopy to make sure nothing was wrong down there because I

would go number 2 about 10 times per day. Nothing significant found. Also ruled

out allergies!

 

I quit seeing my Neruologist because he does not understand CFIDS/FMS. he liked

to call it Myofascial Pain Syndrome. Tried many drugs over the course of at

least 2 years and was leading down the slope of increasing pain meds with no

relief!

 

Didn't really have a problem with Percocet or Oxycodone, but just grew tired of

the pain and complained about it, and he ended up prescribing Fentanyl patches,

typically given to dying cancer patients!  I was waking up every hour! due to

pain from sleeping on my side! Led to flare up and depression and missed 2 weeks

of work to " right " myself!

 

Also saw a Rheumatologist about 1 year ago and he diagnosed me with FMS. He is

useless in treatment and his highest suggestion is to some " expert " in Boston

that charges an arm and a leg, for " eduation " that insurance will not cover! I

have heard of this guy at Support group meetings, and the consensus is that he

is not very useful!

 

He suggested PT and told me to quit if it was not working. But being the

persistent person that I am and thinking that it was not that physically

demanding, I continued even though I was starting to experience a flare up! I

had quit using OTC pain meds because I thought it was bad for my brain fog! But

unchecked pain turns into a BURNING PAIN, FYI!!

 

FInally found this out after suffering for nearly 2 months!

 

There are still some good Drs out there, unfortunately this take our precious

energy, but I think it helps keep our hope alive! Instead of just dealing with

people/Drs who do not really want to deal with our ilness(es).

 

GG in NH

 

PS Contact me if you need direction to websites with listing of " good " Drs. LDN

for 2 months plus now!

[Guest guest]

I am on Fentanyl (Durajesic) patches for my FMS pain they really really help me.

I am allergic to the adhesive so I have to use cortisone cream to combat that.

This is in combination with other meds. I hope you find a dr that can help you

manage. Myofasicial pain syndrome as far as I am aware is not the same as FMS

----- Original Message -----

From: Gaston Gingues

We need to stay as positive as possible and fire/quit seeing Drs who are not

supportive or understanding!

I am a male and initially became ill at the age of 33 in May of 2003 with

Mononucleosis and was told that it could take 2 years for my Immune system to

" bounce " back. In the mean time I was on a HMO and seeing specialtist to help

with my headaches/sore throat/back pain and digestive issues.

[Guest guest]

Was this dr. in Boston Don Goldenberg? He was recommended by my PCP but he

seems to be the only dr. in the area that deals with FM. According to his

secretary he does not deal with CFS. I had an appointment with him in July

and had to cancel. His next available opening was in March.

As I understand it, he sees you once and then comes up with a treatment plan

that the patient takes to their PCP to implementation. My primary complaint

is fatigue so I don¹t think that he would be helpful.

On Thursday I am going to see a dr. in Northampton, MA who treats chronic

diseases, including CFS. I will let you know how it goes. Not terribly

optimistic but at least it is covered by insurance.

Lois

>  

>  We need to stay as positive as possible and fire/quit seeing Drs who are not

> supportive or understanding!

>  

> I am a male and initially became ill at the age of 33 in May of 2003 with

> Mononucleosis and was told that it could take 2 years for my Immune system to

> " bounce " back. In the mean time I was on a HMO and seeing specialtist to help

> with my headaches/sore throat/back pain and digestive issues.

>  

[Guest guest]

i AM WONDERINJG IF YOU REALLY HAD " MONO " AS 33 IS VERY OLD FOR MONO. I

CONTRACTED IT @ 21 YRS. AND THEN DEVELOPED INTO CFIDS.  WAS A LAB TEST DONE FOR

EBV??? DIANE LINDEMAN

________________________________

I am on Fentanyl (Durajesic) patches for my FMS pain they really really help me.

I am allergic to the adhesive so I have to use cortisone cream to combat that.

This is in combination with other meds. I hope you find a dr that can help you

manage. Myofasicial pain syndrome as far as I am aware is not the same as FMS

[Guest guest]

GASTON, I WOULD LIKE THE LIST OF WEBSITES OF GOOD DOCTORS. THANKS. DIANE

[Guest guest]

I got mono at 38! I received lots of ³congratulations² from friends! LOL

Always a late bloomer.

Lois

> i AM WONDERINJG IF YOU REALLY HAD " MONO " AS 33 IS VERY OLD FOR MONO. I

> CONTRACTED IT @ 21 YRS. AND THEN DEVELOPED INTO CFIDS.  WAS A LAB TEST DONE

> FOR EBV???

[Guest guest]

short for mononucleosis-caused by EBV virus(Epstein barr  virus). That is how

many of us contracted CFIDS-starting with EBV and mono. diane Lindeman  That is

how I started this journey.

________________________________

Sorry but what is mono?

[Guest guest]

shouild be epstein barr virus NOT epstein barr A virus-typo. sorry. diane

________________________________

short for mononucleosis- caused by EBV virus(Epstein barr  virus). That is

how many of us contracted CFIDS-starting with EBV and mono. diane Lindeman 

That is how I started this journey.

[Guest guest]

You know I reckon that I have Epstein barr virus is that the one that shows up

on a blood test? I know I also had glandular fever but the EBV I am sure I also

had that thanks for telling me what it meant

----- Original Message -----

From: diane lindeman

short for mononucleosis-caused by EBV virus(Epstein barr virus). That is how

many of us contracted CFIDS-starting with EBV and mono. diane Lindeman� That

is how I started this journey.

[Guest guest]

To ,

 

Sorry but what is mono? Mononucleosis, Epstein Barr Virus.

[Guest guest]

So mononucleosis = epstein barr virus?

----- Original Message -----

From: Gaston Gingues

To ,

Sorry but what is mono? Mononucleosis, Epstein Barr Virus.

[Guest guest]

EBV shows up on a blood test. diane

________________________________

You know I reckon that I have Epstein barr virus is that the one that shows up

on a blood test? I know I also had glandular fever but the EBV I am sure I also

had that thanks for telling me what it meant

[Guest guest]

Hey Kartik

Sorry for taking long to reply, I am not spending much time on the Internet any

more.

The muscle biopsy will be performed with a local anesthetic without epinephrine.

Do you know which is local is best avoided?

Each time I had the most minor surigical intervention using local anesthetic, I

relapsed for over six months!!

Thanks,

Kooky

>

> Hey Kooky,

>

> When you say you worsen with even a minor surgical procedure, do you mean

those with general or local anesthesia? Because there has been a lot of concern

from some specialists that certain surgical anesthetics can cause adverse

effects, even dangerous ones, in CFS patients. The National CFIDS Foundation

has a lot of info on it; you can contact them at:

[Guest guest]

Yes and I had the blood tests done and thats what they found they called it post

viral infection syndrome but most of the symptoms are the same I never

remembered what it was in the blood that they found which they connect to CFS

BUT thats it! Anyway after the serotonin syndrome last year it basically flared

the CFS REALLY badly I have FM ontop on that as well and dystonia as a result of

the interaction means I am a wheelchair user and can no longer walk. Pretty hard

Thanks for clarifying

----- Original Message -----

EBV shows up on a blood test. diane

[Guest guest]

Hey Kooky,

The only info I could find so far is contained in the following article links;

the first is from the CFIDS Association of America:

http://www.cfids.org/archives/2000/2000-1-article03.asp

Very redundant with that, but having a few bits of info of its own, is a page

from Kaplan's site:

http://www.anapsid.org/cnd/drugs/anesthesia.html

Most of the info regards general anesthetics, but they mention local as

well...In your case, i.e. local anesthetics, could it be an allergic reaction/

sensitivity? At least one doctor quoted in these articles goes into that...They

actually cover quite a few bases, esp. in the first article. They list the

anesthetics to avoid (mostly histamine releasers) and so on...Hopefully some of

this info will help you avoid another relapse! (And I STILL wonder why a muscle

biopsy would be useful given standard immunohistology, but whatever..)

I hope this helps, and good luck Kooky! Let us know how it goes!!

Kartik

>

>

> Hey Kartik

>

> Sorry for taking long to reply, I am not spending much time on the Internet

any more.

>

> The muscle biopsy will be performed with a local anesthetic without

epinephrine.

>

>> Do you know which is local is best avoided?

>

> Each time I had the most minor surigical intervention using local anesthetic,

I relapsed for over six months!!