Re: Digest Number 123

[Guest guest]

A question for all you incognitus and chlamydia comrades - I am wondering

if the interferon helps my body kill these bugs,(Beth)

========

from what i am reading, beth, it very easily could cause herxheimer, you

might actually be fighting the intracellulars more than ever before.

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

" Clement " <cfsmail@...> wrote:

, you're our other resident person-who-understands-all-this-medical-

stuff. Have you seen the recent articles about oral interferon in the

Journal of Interferon and Cytokine Research? If I understand it correctly

(but I may not, which is why I'm asking!) it takes about two hours for the

oral interferon to cause your body to upregulate the interferon pathway in

the immune system.

=====

sounds about right, linda. yes, there was stuff in new issue of that mag.

you can see a sample issue of the online version of Journal of Inteferon

and Cytokine Research - look at

http://www.catchword.com/titles/10799907.htm

for a sample issue. i'm sure it links to main site.

in February 1999, vol 19, number 2, you can find:

" Oromucosal Interferon Therapy: Marked Antiviral and Antitumor Activity. "

by M.G. Tovey and C. Maury

and

" Oromucosal Interferon Therapy: Pharmacokinetics and Pharmacodynamics "

P. Eid., J.F. Meritet, C. Maury, A. Lasfar, D. Weill, M.G. Tovey

If you all want to research, you can drown in the data on oral interferon.

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

jody made a comment about the mycoplasma hysteria. I think that

if we were really concerned about getting folks with cfids well,

we would have everyone tested for ALL COMMON VIRUSES IN CFIDS,

AND ALL COMMON BACTERIA, FUNGI IN CFIDS, etc. we would have

immune function testing done, and cytokine levels, and nutrition

levels, and liver detox, antioxidant levels, and toxin levels.

and doctors would do adequate histories, trying to get to the

trigger of this darned disease for each of us (often different.)

of course, this would be after having cfids for a year or two,

not on the first day after the 6 month cutoff....

if we did that, we would find a significant portion have

HHV6 or EBV or mycoplasma or chlamydia pneumoniae. NOT ALL.

I KNOW that the antibiotic therapy has made a tremendous difference

in quality of life. I also know that I can't yet go off the

abx without a relase.

THAT DOES NOT MEAN I SHOULD NOT HAVE TAKEN IT. i was so sick i

could barely get the dishes in the dishwasher. suicide was even

starting to sound tempting...seriously the pain was so bad that

even getting to the grocery store was heroic. (anyone who knows

me knows how interested I am in life, so the pain had to be pretty

bad for me to wish I was dead...) exhaustion, pain, green snot -

so terrible i was beside myself - like a long time torture victim.

given that you CAN WORK, i find that your view of " myco did

not work for me, therefore is not important. " to be irrelevant

to those of us who have not reached your level of freedom.

for me, mycoplasma and chlamydia have been part of this problem,

and are a very important to some of us. the problem is that

doctors all test in a scattershot way, and some docs try some

things, some others......

therefore, no one has a complete picture, sort of like the

blind men trying to describe an elephant - the blind guy

who describes the tail has a different view than the guy

who describes the mouth but it is still an elephant.

dr. vojdani seems to know there are different factors in

place. it would be nice if the treating physicians

knew there are multitudes of factors to consider.

i think for me that abx are PART OF THE SOLUTION, not all.

but until i can find the whole solution, i will be grateful

for whichever part they can give me, because it helps.

ultimately, the medical world will figure out that the

comprehensive tests will SAVE MONEY ON CFIDS... and then

we will all have exact biochem. markers to show problems

and we will know how to use our tool kit of solutions.

most of us will need several things at once to get well

or to get as close to well as possible.

in my case, ABX ARE RIGHT AT THE CENTER OF THE SMORGASBORD

OF SOLUTIONS, PERHAPS NOT YOU, but then I do not need

anything for NMH, and I would not take it away from

just because I do not need it.

nancy mcfadden

> Date: Sun, 11 Apr 1999 01:42:38 -0700 (PDT)

> From: CJCIMAGE@... (JODI CARLSON)

>Subject: Liver

>

>Jane- I think you wanted to know if anyone on the list had any evidence

>of liver problems. At the very beginning of my illness, in 1984, when

>the GP I was seeing was doing a lot of tests and ruling out stuff, the

>one test that was abnormal in the blood work was elevated bilirubin. So

>the GP sent me to a liver specialist. The specialist ordered a fasting

>test. I had to fast on a certain (low) number of calories for the day

>prior to the test, and then go in without eating in the morning for more

>blood work. I was so ill then in every way, this almost blew me apart.

>I was living alone, and I still do not know how I drove myself over

>there to get this bloodwork drawn.

>

>The liver specialist concluded from these test results that I had

>Gilbert's syndrome, which is a benign hereditary disease. In this

>fasting condition, bilirubin will shoot up even higher if you have this.

>Every time I have standard blood work drawn, this high bilirubin still

>shows up. I do not show other liver enzymes as elevated, and I have been

>tested for liver enzymes now about every 3 months since the

>rheumatologist put me on flexeril. He checks liver enzymes before I see

>him. Since flexeril stopped working for me, I am not taking it anymore,

>so might not be having these checked as regularly now. I wonder now

>about the Gilbert's syndrome, and if it could mean something in

>connection with these phase 1 and phase 2 detoxificaion profiles that

>different people have.

>

> I have been thinking more about the liver now that I have been trying

>to learn more about supplements and alternative approaches to integrate

>with prescription meds. For myself, I am thinking of finding a doctor

>(alternative?) who knows about these liver detox tests. I do not think

>any of the doctors I am presently seeing has a connection with Great

>Smokies, or would order them. I am coming to believe that prescription

>meds are good, and we all need them to function and they relieve

>symptoms, but which ones actually do anything to change the underlying

>condition itself? I am also going to talk with Dr. Ferre this week about

>the Hemex test, and about oral interferon. I do not have much hope she

>will order the Hemex test, but I am going to try and see what her

>reasoning is. My question is: if you have this hypercoagulable state,

>possibly caused by an activated immune system, and you take the heparin

>to shut this down, and then maintain on the coumadin, is this really

>doing anything for the underlying activated immune state, or is this

>another case of a good prescription med protocol to relieve symptoms?

>Again, there is nothing wrong with relieving symptoms. We cannot

>function without sleep disorder relief, pain relief, etc. But what will

>get at the root cause, or causes, of this illness?

>

>I believe this is what Dr. Cheney is going for in all his hypothesizing

>and theorizing. I have never seen Dr. Cheney as a patient, and I

>certainly do not believe he has any particular answer or magic, but the

>guy THINKS. Maybe he is way out in left field, only time will tell.

>This is just my humble opinion, but I believe he is not that interested

>in mycoplasma, because he does not believe it is the CAUSE of this

>illness. I think, if you read his statments carefully on the last CFS

>Radio Show that Dr. Mazlen hosts, he stated there that he thinks the

>microbial activation (chlamydia pneumonia, mycoplasmya) reported with

>this condition in so many of us is part of the re-activation of dormant

>and latent things all of us have been exposed to from day one. I think

>Cheney is trying to go past the re-activation stuff to get at the root

>causes, like, how can we help the body deal with things at a basic level

>so these things won't re-activate? Once the body is in this state of

>re-activation, how can we shut this down? By throwing all kinds of

>things (antibiotics, antivirals, antifungals) at all these myriad of

>re-activating organisms? Given all the side effects of these drugs, will

>this save our lives or make us worse in the long run? This might not

>apply to those newly diagnosed. Probably you have a lot better chance

>of this approach working if you have not been sick a long time.

>

>Please do not get me wrong. I am very concerned about all these issues,

>and I respect each person's decisions based on their doctor's advice, on

>how to deal with them. I, for one, have been tested 3 times for

>mycoplasma. The first test was negative, followed by 2 positive tests. I

>did antibiotics for a while under Dr. See and felt no different (at

>least 3 months). I do not believe for a second that taking long term

>antibiotics is going to make me well. I believe that there is something

>wrong with my immune system. If I can make it function well, my body

>will take care of these organisms just like it keeps most stuff in

>check.

>

>I have lived through, what I call, the " mycoplasma hysteria " which

>followed in the wake of Dr. Nicolson, Dr. See, and Dr. Vojani's lecures

>here in Southern California. Everyone ran out and got tested for

>mycoplasma. Most of my friends here in the support group that went on

>long term antibiotics are still coming to the support group. They are

>not well. I look at mycoplasma as a side issue of this total illness.

>One more case where the natural balance of our bodies is out of whack.

>Mycoplasma normally live in our bodies, just like different colonies of

>yeast live in our guts. I show antibodies to mycoplasma pneumonia. The

>mycoplasma incognitus fermentans was testing done by PCR. I think all

>these tests are useful to see what we have once had, or what is

>re-activated.

>

>I know I only speak for myself when I say I am not jumping on the

>bandwagon to treat all these re-activating entities. I think it is not

>very medically sound (lay person's ignorance?) to think that we should

>have to be on a therapy for years and years in order to clear something

>out of our bodies. That just does not make common sense to me. Think

>about it. That makes about as much sense to me as taking something, and

>when it makes you feel worse, keep on taking it. Whether some of these

>organisms have done permanent damage to our immune systems or the

>genetic material in our cells is another matter. If they have done

>permanent damage, we could take crap for the rest of our lives and

>nothing would change, except we would get eventually sicker from side

>effects of taking strong drugs that weren't designed to be taken for

>years and years. And when our bodies were challenged by a new bacteria,

>then we might not be able to find an antibiotic that would help us, and

>then we would die.

>

>Well, I think I should give up these late night ruminations. I started

>out with a little simple thing about the liver, and went on some kind of

>rambling about I don't even know what, or how I got to that pessimistic

>conclusion. I guess you can classify me as a gullible skeptic. I listen

>to every lecture and hear every idea, and run out and get tested. Try

>treatments. Maybe I am actually a just a jaded cynic. Anyway, I

>obviously think that something has got to help, or I wouldn't be doing

>that, or on this list trying to learn. These are only conclusions I

>reached for myself, in my own case. And, who knows, I might change my

>mind tomorrow.

>

>Jodi

>

>

>

>___________________________________________________________________________

____

>___________________________________________________________________________

____

>

>

[Guest guest]

In a message dated 4/24/99 3:23:54 AM Central Daylight Time,

onelist writes:

> Of course there are NSAIDs and

>

> cortico steroids - they treat symptoms of inflammation and pain - but do

not

>

> stop the destruction!

I thought that corticosteroids (at least oral prednisone) did stop the

destruction. Does it not?

Dwanna

[Guest guest]

From what I understand of steroids, they

can give you osteoporosis and of course

weight gain and other side effects to mention. They are anti-inflammatories.

Steroidal antiinflammatories to be specific-as compared to NSAIDS-

non-steroidal

antiinflammatories like Voltaren, Advil, Celebrex, Etc.

A note regarding if there is hope for Methotrexate to work to the person who

is currently taking 7.5 mg. YES this is a very low dose. I would definitely

talk to the doctor about raising the dose until you have some relief! Again

I stress that many of us with severe cases have gone up to 50MG a week, and

even added Neoral into the mix!

Celebrex is not a DMARD. It will relieve

pain and is supposed to be easy on the stomach.

[Guest guest]

charles doctor told him to take zinc to help taste buds

[Guest guest]

,

I recently searched pubmed and found quite a few abstracts, one talking

about a glyco lipid called " dodecylglycerol. " Monolaurin is

" dodecanoylglycerol " or something...not that it matters that I can:t follow

these names...the point I haven't talked to my holistic doctor who sent me

the monolaurin about the dodecylglycerol but but I wonder if you know more

about this, and specifically if it can be purchased at HFS's like monolaurin

can?

I would be very interested in reading the report if you find it... or just

send a link to the whole list please!

Thank you,

Judith

Digest Number 123

>

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[Guest guest]

Marty,

I think articles sent as separate posts are easier to sort, keep, and find

when someone needs them. I would rather use the space to keep the ones I

need than using extra space to keep everything and have to spend a lot of

time sorting, searching and copying when I need to find something. Just my

thoughts...

Alison

Re: Digest Number 123

Dear Claudine:

I'll be glad to do this if that is what many want. So, I need to

hear from anyone who is against this. I did it to save space.

The question was would I post the articles as separate posts? Marty

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[Guest guest]

I am a genius - Happy days --I found the directions! This was from Kent

Moreno who was on our list at one time - don't know where he has been

lately. Kent's caveat will be repeated verbatim. " I would strongly

recommend talking with an occupational therapist who is knowledgeable in

sensory intergration before using the swing with a person with autism. "

Parts List

Nylon Hammock w/o the wood bar to separate the different ropes (WalMart

has a good one for $16.95 in the camping section)

2-3 foot of chain (depending on the height of your ceiling)

2 " O rings " (O rings are metal ovals about 2 inches long with a spring

loaded gate. Find them in hardware stores)

1 swivel with a spring loaded gate on one end

Approx. 2 feet wide section of closed cell foam backpacker's pad (that

goes under a sleeping bag)

1 eye hook with wooden scre end

1 smaller O ring with spring loaded gate

1 shoelace or piece of nylon cord

To make the vestibular net:

1)Find a good location which is free of furniture and other objects

2) Locate a 2 x6 or larger support joist in the ceiling

3) Screw hook into the ceiling

4) Run one of the larger O rings through the eye hook

5) Attach the chain to the O ring

6) Attach the 2nd O ring to the other end of the chain

7) Attach the swivel to the O ring

8) Fold the hammock in half and join the two O rings from the ends of

each side of the hammock with the swivel with the spring loaded gate

9) Place the piece of closed cell foam in the bottom of the hammock

10) Lace up one side of the hammock so that only one side is open

11) Upon the child entering the net swing, fold the front closed and

then secure it to the side of the net swing with the small O ring

It will probably be necessary to adjust the height of the swing (it

should only be a couple of inches off the ground when the individual is

in it) as well as at what point on the back of the swing do you lace it

closed so the individual will be sitting in the middle of the swing.

Also it works well to lubricate the moving parts of the swivel with a

heavy oil or wax. For therapeuticbenefit, when spinning a child, spin

them so that they remain perpendicular to the ground rather than in a

swinging back and forth motion.

As taken from Kent Moreno in a message from 1/9/99

My additional caveat- NEVER LEAVE YOUR CHILD ALONE IN THIS!

Sara

[Guest guest]

testing...testing...testing....

Re: Digest Number 123

>

>

> Dear Claudine:

> I'll be glad to do this if that is what many want. So, I need to

> hear from anyone who is against this. I did it to save space.

> The question was would I post the articles as separate posts? Marty

>

>

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[Guest guest]

Message: 2

Date: Mon, 30 Oct 2000 18:10:55 -0500

From: " Al Lidert " <doeboy@...>

Subject: Drugs

Have had 8 Zaps since 1 year ago, when the ICD was deftly put into place.

Only problem is that the last 5 Zaps occurred within 25 hours, 4 days ago.

Have been varying drugs, and now am on Amiodarone. W ould anyone who has had

exciting adventures (good or bad) with this drug kindly reply as to what to

watch for, or any advice that may be helpful. Privately is OK.

Regards, Al Lidert

doeboy@...

>The trouble with being poor is that it

takes up all your time.

Hi Al and other list members,

I was started on Ammiodarone in 1988 when serious arrhythmia problems started.

Because I seemed

to be getting along ok and my physician thought there were many adverse effects

from the drug, he

took me off and in a matter of weeks I had a sd attack. I was sent back to the

original electrophysiologist

in California and they " reloaded " me on ammio. About four months later I had an

EP study which revealed

that the vtach could still occur even while taking the drug. I was not sure I

wanted the ICD but after hearing

the pros and cons decided to go ahead with it. It was implanted in 1990. I've

been on Ammiodarone (or

sometimes, Cordarone) for 11 1/2 years now. I'm seem to be pretty stable at 300

mg a day. I've had some

side effects; first, the weight and thyroid thing - then, unsteady hands,

sensitivity to the sun (I wear sunscreen

all the time) and tingly feeling limbs (feels like they are full of carbonated

blood and the bubbles are popping).

People are always asking me what happened to my nose - asking if I ran into a

door or someone hit me. If

I'm having a good day, I just laugh and give an explanation. If not, I

sometimes

am irritated. Today I went

for a dr. appointment and for the third time in a row that he's seen me, he

started out with " What in the world

happened to your nose? " I know he's a very busy man.....but maybe someday he'll

remember. Most of the

serious problems I've experienced were not drug-related. Except for a

drug-induced Toursade des Pointes

episode back in 1988. That occurred just before I began taking ammiodarone.

I really got a chuckle our your Halloween message. I read all my messages and

benefit so much from the thoughts and experiences of our " electric kangaroos "

(coined by a Zapper from Australia). Haven't written much lately--

didn't want everyone to get tired of listening to my stories.

Take care everyone and thank you all for being here!

Sue

[Guest guest]

Hi,

I was wondering if anyone out there could direct me to an SLP with a

specilization in apraxia? I live in upstate New York and need an outside

evaluation for my 6.4 year old son for the school district. They are going

to pay but claim they cannot find such an animal in the area. Any help??

Many thanks. Michele

[Guest guest]

I want to welcome all new members. My name is Terri. This is a great

group with wonderful ppl. How is everyone today? I am on a new med for

my cold so i thought i'd better write before i take it. Believe me after

i take it i'm in zombie land lol.

love ya guys

Terri

[Guest guest]

Hi everyone:

MJ and I are finally back from vacations. We spent a month at the

lake house in New Jersey and a month in Ohio. We got back tonite. It's been

a long time since we have been home. School starts on the 4th and MJ will be

in 9th grade, all honors classes (well, 2 are 10th grade honors classes). We

have a meeting tomorrow and freshman orientation friday. Hope everyone has

had an ok summer.

<A HREF= " http://photos./bshanson68

" >http://photos./bshanson68</A> photos

<A

HREF= " http://www.caringbridge.com/ny/mjpurk " >http://www.caringbridge.com/ny/mjpu\

rk</A> journal

<A

HREF= " http://smilequilts.com/margaret.html " >http://smilequilts.com/margaret.html\

</A> smile quilt

<A HREF= " http://www.hugsandhope.com/ " >Hugs and Hope Club for Sick Kids</A>

http://www.hugsandhope.com

A child is like a butterfly. Some can fly higher than others,

but each one flies the best it can. Why compare one against the other?

Each one is different. Each one is special. Each one is beautiful.

[Guest guest]

No ho wood is the camphor oil fraction you are being conned with.

Tony

www.tonyburfield.co.uk

> Is Hoewood oil the Rosewood oil you are looking for?

>

> Kara

>