experimental treatments

[Guest guest]

Dear All.

Wouldn't you agree there is a difference between experimental treatements

that are logical and based on evidence, rather than pie in the sky insults?

Would a Cancer forum 'tolerate' tomato sandwiches as a cure for Cancer?

Would a diabetes forum 'tolerate' sticking your thumb in your mouth and

sticking cotton wool in your ear?

I doubt it. This forum impressed me, with it's excellent ideas/user knowledge

and support, and has only been ruined by someone hard-selling nonsense.

To protest about nonsense is not 'flaming; in any sense of the word.

Therefore why should anyone here tolerate the 'cotton wool' thread if this

is a forum for serious, and chronically ill people who aren't mentally ill?

Well, is it?

Regards

Ben.

Experimental Treatments

Hi All.

This group has been around for a few years and has mostly been a place

for friendly discussion of treatments. People would tell about

what helped them, or didn't help them and left other people to decide

for themselves if they wanted to try it.

People have advocated treatments, but in a very nonjudgemental way.

Nelly Pointis has advocated looking into Lyme Disease for years in a

very friendly way. She has never been offended that we all haven't

started getting treated for Lyme.

Ken Lassesen (owner and moderator of the list) has put his CFIDS into

remission with a combination of blood thinning and infection

treatments. He has built a web page with a lot of information about

his approach. He has suggested that we try it a number of times, but

he has never demanded it.

It has always been understood that this disease is different for each

of us and that our personal circumstances and financial resources are

different.

For a while now, it seems that people are advocating treatments in a

more aggressive way. We don't need the hard sell. Put what you've

learned out there and let people decide if it's right for them. If

your treatment doesn't catch the group's attention, don't take it

personally.

I have posted about what has been very helpful to me, IV glutathione,

a few times, but nobody ever seemed to take notice. That's OK. It

might be a waste of time and money for other people.

Maybe we can get back to the original mode of discussion. The Home

page of the group says this:

This is a no-flaming area

If you have strong feelings on an issue -- it is best

not to post.

, I meant to send that post about condescension to you back

channel. I'm sorry I posted it to the group by mistake. So I admit

that I have done my part to cause tension on the group, but I'll try

to do better in the future.

Tom

[Guest guest]

> Dear All.

>

> Wouldn't you agree there is a difference between experimental

treatements

> that are logical and based on evidence, rather than pie in the sky

insults?

>

Good point Ben.

We are in a struggle to gain acceptance from the mainstream medical

community that CFIDS is a real physical illness. We are no where near

that acceptance.

If it were to be decided that CFIDS is definitely a psychosomatic

disorder (there are a lot of people pushing for this) we would be in

big trouble.

So go ahead and post about cotton in your ears or whatever, but again,

let's avoid the hard sell on this stuff. We need to be taken

seriously and I guarantee you that no one who is undecided about CFIDS

being a physical disease will take this seriously.

Tom

[Guest guest]

Here! Here!

Tomcy6 wrote:

>

>

>

>>Dear All.

>>

>>Wouldn't you agree there is a difference between experimental

>>

>>

>treatements

>

>

>>that are logical and based on evidence, rather than pie in the sky

>>

>>

>insults?

>

>

>Good point Ben.

>

>We are in a struggle to gain acceptance from the mainstream medical

>community that CFIDS is a real physical illness. We are no where near

>that acceptance.

>

>If it were to be decided that CFIDS is definitely a psychosomatic

>disorder (there are a lot of people pushing for this) we would be in

>big trouble.

>

>So go ahead and post about cotton in your ears or whatever, but again,

>let's avoid the hard sell on this stuff. We need to be taken

>seriously and I guarantee you that no one who is undecided about CFIDS

>being a physical disease will take this seriously.

>

>Tom

>

>

>

>This list is intended for patients to share personal experiences with each

other, not to give medical advice. If you are interested in any treatment

discussed here, please consult your doctor.

>

>

[Guest guest]

,

Periodically there have been people who have posted that they have tried chiropractors, acupuncture, holistic, alternative, complementary medicine, or Bowen Technique. Nobody has claimed a cure to the satisfaction of most people here, but they trying to avoid the surgery and hopefully they succeed without first damaging their esophagus.

To read their posts I suggest you look to see where the word "Search" is and enter a search word (eg. acupuncture) into the search field. What will then come up will be all posts that contain that word.

In a message dated 11/3/2006 7:31:59 A.M. Eastern Standard Time, lisak202@... writes:

Has anyone heard of any experimental treatments in the US or elsewhere, or has anyone tried holistic medicine or acupuncture with their regular medical treatment?

Low, Low, Low Rates! Check out Messenger's cheap PC-to-Phone call rates.

[Guest guest]

Has anyone heard of any experimental treatments in the US or elsewhere, or has anyone tried holistic medicine or acupuncture with their regular medical treatment?

Low, Low, Low Rates! Check out Messenger's cheap PC-to-Phone call rates.

[Guest guest]

,

tried acupuncture for 20 treatments this summer. It helped

him to feel less stress and more energy, but didn't do a lot for the

spasms. He has been going to a chiropractor for the last 6 weeks or

so, but I'm not sure if that will help anything. It does help his

stiff neck (from the times he can only lay on the couch when he's

sick), but sometimes he can just feel the spasms start up a little

after an adjustment.

You asked before if I understand what really happens with DES. As

far as I explain it to family and friends is that the normal

peristaltic wave (that would push food down your E to your stomach in

a nice, gentle wave) is scrambled up. The nerves are not telling the

muscles the right thing to do. And, sometimes the muscles contract

really hard (spasm) and just about close off the tube of the E,

causing intense chest pains and dysphagia. I hope that helps. Here

are a couple of links to help you read more:

http://www.emedicine.com/MED/topic743.htm (an article)

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?CMD=search & DB=pubmed

(Enter your topic to search medical publications. Watch the dates on

them so you get the most recent information.)

Good luck and have a great weekend!

in Michigan

>

> Has anyone heard of any experimental treatments in the US or

elsewhere, or has anyone tried holistic medicine or acupuncture with

their regular medical treatment?

>

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

> Low, Low, Low Rates! Check out Messenger's cheap PC-to-Phone

call rates.

>

[Guest guest]

for me ... natural vasodilators,

caffeine et al.NaHCO2. Chocolate.

Noodles.

Getting the liquids to go on down,

not getting dehydrated and all

leads to better tings for the most

part..or so you'd think.

Someone posted something about some

kinda afterbirth extract therapy idea

from HK, China a while back.

The wild frontier !

>

> Has anyone heard of any experimental treatments in the US or

elsewhere, or has anyone tried holistic medicine or acupuncture with

their regular medical treatment?

>

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

> Low, Low, Low Rates! Check out Messenger's cheap PC-to-

Phone call rates.

>

[Guest guest]

errata..NaHCO3

> >

> > Has anyone heard of any experimental treatments in the US or

> elsewhere, or has anyone tried holistic medicine or acupuncture

with

> their regular medical treatment?

> >

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

> > Low, Low, Low Rates! Check out Messenger's cheap PC-to-

> Phone call rates.

> >

>

[Guest guest]

Hi Marcia,

As a newbie I am not sure what is new and am worried about mentioning

anything pre 2004, but someone asked a week or so ago about Ivermectin

for Cryptostrongylus Pulmoni and I think that is new?

I replied to say that I was taking it but nobody else replied.......

It would have been nice to know whether anyone else has taken it, or,

for that matter, if not, why not?!

The research papers that I read indicated that it is being found in 58%

of us.

Rosemary-in-Greece

Marcia wrote:

> I also would like to see more discussion of cutting-edge research or

> newly-proposed / recently-tried treatments. But maybe the case is that

> there really isn't as much in the way of brand new thoughts out there

> right now? Dr Kerr, Dr Yasko, a couple of others, seem to be leading

> the way as far as I can tell. And at least with the Yasko protocol

> (which I have been following for a year now) it is complex and doesn't

> lead to immediate results, it's more of a long-term thing, so there

> isn't a lot in the way of " news " to chat about there.

>

> I'm not well enough to do much research on PubMed (brain fog), but I

> like to see what others have dug up in the way of recent research.

>

> What do any of *you* think are the latest trends in diagnosing and

> treating CFS/ME/FM? Or do you think there's nothing new lately?

>

> Marcia on

> in Salem, Massachusetts

>

>

>

[Guest guest]

>

> I also would like to see more discussion of cutting-edge research

or

> newly-proposed / recently-tried treatments. But maybe the case is

that

> there really isn't as much in the way of brand new thoughts out

there

> right now? Dr Kerr, Dr Yasko, a couple of others, seem to be

leading

> the way as far as I can tell.

>

> What do any of *you* think are the latest trends in diagnosing and

> treating CFS/ME/FM? Or do you think there's nothing new lately?

>

> Marcia on

> in Salem, Massachusetts

>

Hi Marcia,

Forgive me if this appears twice, hit wrong button.

I think there is so much going on now that I think we do have alot

to talk about. I didn't at first which is why I thought there was

less experimental conversation here but then I started going through

Cort 's website - specifically the conference page, the 7th

PANDORA/ICFA meeting.

I am most encouraged by the brain studies as that seems logical to

go upstream from every system. The fact that several researchers

are now starting to see crossover FROM DIFFERENT ANGLES is something

I don't think we've had before.

" Dr. Kerr then noted several intersections between his gene

expression results and other findings. Both that his gene expression

and Dr. Baraniuk's cerebral spinal fluid proteome results have

highlighted gelsolin - a possible marker of amyloidosis. Likewise

the Nestad study suggested that mitochondrial problems caused the

increased lactate brain levels found. "

" Kerr's gene expression studies are finding three main abnormalities

in CFS patients that involve the immune system, mitochondrial

function and G-protein signaling and, yes, he is validating his

original gene expression results. (What a relief!) He mentioned

three genes, in particular; gelsolin – which is involved in

apoptosis and amyloidosis, another that is upregulated by

organophosphate pesticides, and EIF – a mitochondrial gene involved

in the demyelination of nerves, and may be implicated in viral

activity.

He next indicated that while hereditary factors are at work in CFS

that he doesn't believe they play a really major role. He then

singled out the powerful pro-inflammatory cytokine TNF-a, which has

not only been found elevated in CFS patients but has a mutation that

is associated with fatigue. Dr. Kerr is currently engaged in a trial

of the TNF-a inhibitor, Etanercept, in a select number of CFS

patients. "

Since I am familiar with Dr. Baraniuk's study, somewhat, I

thought I would start looking into Dr. Kerr's studies. He is

further along than anyone and I believe that he is supported by a

charity - no governmental money (UK or US). I think all the patient

supported groups should send money to Kerr.

Anyway, that is why I brought up TNF-a inhibitor because I have been

very cognitive lately which is encouraging since I really felt I

permanently damaged my brain. (I got off a lot of supplements which

were detoxing me too fast and brain fog was my worst symtpom). And

I feel that my body has issues with lactates (in my muscles) and I

am interested in working again which I could do if I was better.

And I was confused about the use of TNFa inhibitor on people with

infections but then I re-read the report and he mentions on " select

number of CFS patients " so maybe he took least or most infectious

among them.

Some of what we take is bad for us at first then will make us

better. Anyway, I am looking forward to Dr. Kerr's results and will

begin researching Dr. Nestad study.

So,

I think we have more to talk about than we ever have before. I

think as far as supplements, we've tried most of it out there. Not

much left to try.

My opinion, which doesn't count for much.

Marti

[Guest guest]

Dear Marti,

I saw a section where Dr Kerr specificslly says what he thinks is happening in

our brain when it comes too light and noise, it had to do with the frontal lobe

and brain stem each responsible for light and noise but I cant find it, do you

know where that information is at or if so could you copy and paste it on the

reply if you have a free moment, it was one specific paragraph somewhere

Thanks so Kindly

Mike

@...: marti_zavala@...: Sat, 17

May 2008 17:54:57 +0000Subject: Re: Experimental treatments

>> I

also would like to see more discussion of cutting-edge research or >

newly-proposed / recently-tried treatments. But maybe the case is that> there

really isn't as much in the way of brand new thoughts out there> right now? Dr

Kerr, Dr Yasko, a couple of others, seem to be leading> the way as far as I can

tell. > > What do any of *you* think are the latest trends in diagnosing and>

treating CFS/ME/FM? Or do you think there's nothing new lately? > > Marcia

on> in Salem, Massachusetts>Hi Marcia,Forgive me if this appears twice,

hit wrong button.I think there is so much going on now that I think we do have

alot to talk about. I didn't at first which is why I thought there was less

experimental conversation here but then I started going through Cort 's

website - specifically the conference page, the 7th PANDORA/ICFA meeting.I am

most encouraged by the brain studies as that seems logical to go upstream from

every system. The fact that several researchers are now starting to see

crossover FROM DIFFERENT ANGLES is something I don't think we've had before. " Dr.

Kerr then noted several intersections between his gene expression results and

other findings. Both that his gene expression and Dr. Baraniuk's cerebral spinal

fluid proteome results have highlighted gelsolin - a possible marker of

amyloidosis. Likewise the Nestad study suggested that mitochondrial problems

caused the increased lactate brain levels found. " " Kerr's gene expression studies

are finding three main abnormalities in CFS patients that involve the immune

system, mitochondrial function and G-protein signaling and, yes, he is

validating his original gene expression results. (What a relief!) He mentioned

three genes, in particular; gelsolin – which is involved in apoptosis and

amyloidosis, another that is upregulated by organophosphate pesticides, and EIF

– a mitochondrial gene involved in the demyelination of nerves, and may be

implicated in viral activity. He next indicated that while hereditary factors

are at work in CFS that he doesn't believe they play a really major role. He

then singled out the powerful pro-inflammatory cytokine TNF-a, which has not

only been found elevated in CFS patients but has a mutation that is associated

with fatigue. Dr. Kerr is currently engaged in a trial of the TNF-a inhibitor,

Etanercept, in a select number of CFS patients. " Since I am familiar with Dr.

Baraniuk's study, somewhat, I thought I would start looking into Dr.

Kerr's studies. He is further along than anyone and I believe that he is

supported by a charity - no governmental money (UK or US). I think all the

patient supported groups should send money to Kerr.Anyway, that is why I brought

up TNF-a inhibitor because I have been very cognitive lately which is

encouraging since I really felt I permanently damaged my brain. (I got off a lot

of supplements which were detoxing me too fast and brain fog was my worst

symtpom). And I feel that my body has issues with lactates (in my muscles) and I

am interested in working again which I could do if I was better.And I was

confused about the use of TNFa inhibitor on people with infections but then I

re-read the report and he mentions on " select number of CFS patients " so maybe

he took least or most infectious among them.Some of what we take is bad for us

at first then will make us better. Anyway, I am looking forward to Dr. Kerr's

results and will begin researching Dr. Nestad study.So,I think we have more to

talk about than we ever have before. I think as far as supplements, we've tried

most of it out there. Not much left to try. My opinion, which doesn't count for

much.Marti

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