CFS

December 23, 2005

Hi, I just discovered this group via a friend with CFS who has an autist child. What kinds of experiences have people with CFS had with LDN? I've been sick for 14 years. The first 1 1/2 or so years I took LDN and also mega vitamin drips.That was in 1991-92. I very slowly got better and was in good shape for a year. The doc who gave me LDN said that was why I got better; the doc who gave me the drips said the drips made me better. I continued to work all that time Moved from nyc to San Francisco, thinking it would be better for my health. It wasn't. Relapsed in late 1993 and I've been sick ever since and on disability. Tried LDN again

about ten year ago but didn''t see any improvement. But now I'm thinking about it again for the obvious reason that nothing else has worked. My primary symptoms are: terrible non-restorative sleep (which only started five years ago); cognitive problems, which can take about a a half dozen different forms; low energy to no energy. I used to have the bad 'flu-like' symptoms but that's rare now unless I over do it; and I had terrible food intolerances (passing out after meals!) which are now under control; also, I used to have bad energy crashes where in the span of a few minutes it felt like the mitochondrias in all my cells shut down and I'd go, literally, into a coma-like state for an hour or two, once or twice a day. That seems behind me after almost a year on zithromax (I was chasing down a possible Lyme infection). Don't know if it's relevant, but I've an autistic cousin -- the classical kind, i.e., autistic from birth. thanks in advance for any responses. michael

December 23, 2005

--- In low dose naltrexone , MICHAEL ALLEN <msallen1984@s...>

wrote:

>

> Hi,

>

> I just discovered this group via a friend with CFS who has an autist

child. What kinds of experiences have people with CFS had with LDN? I've been

sick for 14 years. The first 1 1/2 or so years I took LDN and also mega vitamin

drips.That was in 1991-92. I very slowly got better and was in good shape for

a year. The doc who gave me LDN said that was why I got better; the doc who gave

me the drips said the drips made me better. I continued to work all that time

Moved from nyc to San Francisco, thinking it would be better for my health. It

wasn't. Relapsed in late 1993 and I've been sick ever since and on disability.

Tried LDN again about ten year ago but didn''t see any improvement. But now I'm

thinking about it again for the obvious

> reason that nothing else has worked.

>

> My primary symptoms are: terrible non-restorative sleep (which only

started five years ago); cognitive problems, which can take about a a half

dozen different forms; low energy to no energy. I used to have the bad

'flu-like' symptoms but that's rare now unless I over do it; and I had terrible

food intolerances (passing out after meals!) which are now under control; also,

I used to have bad energy crashes where in the span of a few minutes it felt

like the mitochondrias in all my cells shut down and I'd go, literally, into a

coma-like state for an hour or two, once or twice a day. That seems behind me

after almost a year on zithromax (I was chasing down a possible Lyme infection).

>

> Don't know if it's relevant, but I've an autistic cousin -- the classical

kind, i.e., autistic from birth.

>

> thanks in advance for any responses.

>

> michael

>

========

,

Your symptoms sound a whole lot like a friend of mine's son who was diagnosed MS

at age 10 but at 19 it was discovered via a Western Blot that he had Lyme

instead. He had become completely catatonic(non-responsive to everything) and

was in a comatose-like state.

Find a lyme literate doctor and rule out lyme so to be sure you are strictly

dealing with CFS. LDN can make Lyme worse. Many get their Western Blot through

IgeneX labs. Here's their website below.

IgeneX LYME WESTERN BLOT

http://www.personalconsult.com/articles/drjonesapproach.html

November 26, 2007

I can sure relate to it. Am slightly better now, but have to deal with

other things. The CFS that causes lack of exercise caused my type 2

diabetes, and progression of fatty liver disease (which I now believe

is actually fungal liver disease). The tiredness, as he described, is

not a normal weary fatigue. It's debilitating.

Barth

---

sac> _http://www.youtube.com/watch?v=oUcJad6w-XQ & feature=related_

sac> (http://www.youtube.com/watch?v=oUcJad6w-XQ & feature=related)

sac> Turn into this video!! He has all the symptoms I had and more.

sac> Most of us can probably relate to his story.

sac> Sue

sac> **************************************Check out AOL's list of 2007's

hottest

sac> products.

sac> (http://money.aol.com/special/hot-products-2007?NCID=aoltop00030000000001)

sac>

October 27, 2009

Lana,

Instead of everyone sending you a list of there symptoms, lets make this easier

and just give the members a list of yours. Then maybe they can begin to give you

some answers on what they did to over come them.

Thanks

KC

>

> SYMPTOMS:

>

> anyone out there plz send me some of the symptoms that you suffer from and

what you did about it. I will have to take an extended sick leave from my job in

order to heal all of my symptoms. I sure hope this helps b/c I need to be back

to my old self again!!!!!

> CFS I guess this stands for chronic fatigue syndrome, which I definately have

95% of the day and at least 5 days out of 7. I am sick of it all!!!

>

October 27, 2009

My list of symptoms are many!

CFS, memory loss (confusion), severe headaches, bruising, sinus problems, fever

and chills, flu like symptoms daily, extreme hoarseness, asthma (which I never

have had before), high blood pressure (which I never had before), and I could go

on and on!

Lana,

Instead of everyone sending you a list of there symptoms, lets make this easier

and just give the members a list of yours. Then maybe they can begin to give you

some answers on what they did to over come them.

Thanks

KC

October 27, 2009

Hi

Have you suffered mold exposure? Where? You really have to give more detail,

how you got sick, where (if you know) and what your list is of synptoms so

others here can try to help you sort this out. Even if it is exahusting to write

them all it will give a better picture for us. Thank you !

God Bless !!

dragonflymcs

Mayleen

________________________________

From: Lana Deville <lcdeville@...>

Sent: Mon, October 26, 2009 11:42:14 PM

Subject: Re: [] Re: CFS

My list of symptoms are many!

CFS, memory loss (confusion), severe headaches, bruising, sinus problems, fever

and chills, flu like symptoms daily, extreme hoarseness, asthma (which I never

have had before), high blood pressure (which I never had before), and I could go

on and on!

October 27, 2009

Mine started with a bout of what I *thought* was the flu. After nearly 2 weeks

of that, I tried to go back to work. I taught in a school constructed in the

early 1970's -- and my classroom was the mold culprit.I kept a horrible cough

for several months -- sounded like a " smoker's cough " only I have never smoked.

I had to keep water/cough drops close by. I also had mental fuzziness --

inability to concentrate or think clearly.Total lack of

energy/fatigue.Eventually diagnosed with asthma.As long as I was at the school

my voice was affected: Mondays (after being home for the weekend would be ok.

By Wednesday, I'd be getting hoarse. By Friday, I had no voice above a whisper

and wrote most of my lessons on the board.

Since I got out of that environment (another whole story)...I am better. But I

still have all the symptoms of asthma. My energy level is still much lower than

it used to be. I am able to concentrate better, but not like I used to be. And

I find myself " clearing my throat " a lot more than I used to have to.

So long as I dont get around my triggers, I can talk.

Silver in SC <><

-

Lana,

Instead of everyone sending you a list of there symptoms, lets make this easier

and just give the members a list of yours. Then maybe they can begin to give you

some answers on what they did to over come them.

Thanks

KC

October 27, 2009

Flu-like symptoms can be related to lyme disease. You might consider getting the

Western Blot test. Also, in addition to tests for mold exposure, consider

getting your thyroid tested fully-- not just tsh. but at least to start free t4,

free t3, reverse t3. Also check thyroid antibodies: TPO, TSI, ATA. You can test

for adrenal fatigue and other hormones via a Saliva Test.

You also would help yourself if you could trace out what was going on before and

when you developed these symptoms. Were you exposed to anything chemical or any

molds? The causes could also be viral and bacterial.

Candida is often a cause. Have you been on any long or repeated courses of

antibiotics? I developed candida from a round of courses treating dental

infections. Even things like underlying dental infections can be a factor. Some

people also cannot handle metal fillings and that can play a role in CFS.

My feelings are that unless you can try and trace the causes of your situation

you will be groping in the dark as to what might be helpful. There actually

might be something simple at the core of what ails you. For example, I know of

two people who drastically improved their health by finding out that they were

had celiac's disease. One person had hashimoto's thyroid disease and the other

had CFS and both improved. That is certainly the exception as sometimes there

can be a number of causes. But either way, you need to try and trace out the

causes and put the pieces together. There is no one stop fix all most often.

An example of that is Low Dose Naltroxone, which is supposed to be very helpful

for autoimmune issues and even cancers. But the more I dug into it, the more I

learned that it doesn't usually get prescribed by itself by doctors. There are

other protocols to compliment it. Some people that have candida for example will

find that LDN can exacerbate the candida for a while. So, in that case the

doctor will insist on also treating the candida.

I know this is frustrating. You are preaching to the choir here and many of us

here are dealing with mulitple conditions, high levels of exhaustion as well.

You have everyone's sympathy for sure. The best thing to do is, as best as you

can, research and learn and seek help where you can.

I wonder if there is a CFS list?

I've covered alot of turf. KC, hopefully, I've not strayed too far off topic. My

apologies if so.

Hope this is helpful.

Sam

My list of symptoms are many!

CFS, memory loss (confusion), severe headaches, bruising, sinus problems, fever

and chills, flu like symptoms daily, extreme hoarseness, asthma (which I never

have had before), high blood pressure (which I never had before), and I could go

on and on!

October 27, 2009

Hi Lana,

You are close to a great Dr who can be of great assistance to you. He has been

treating people with mold illness for over 30 years.

http://www.coem.com/aboutus_aboutourarea.shtml

God Bless !!

dragonflymcs

Mayleen

________________________________

From: Anita Tarlton <silver82956@...>

Sent: Tue, October 27, 2009 8:15:27 AM

Subject: Re: [] Re: CFS

Mine started with a bout of what I *thought* was the flu. After nearly 2 weeks

of that, I tried to go back to work. I taught in a school constructed in the

early 1970's -- and my classroom was the mold culprit.

Silver in SC <><

October 27, 2009

Story sounds all very familiar to me except for the asthma.

Mine started with a bout of what I *thought* was the flu. After nearly 2

weeks of that, I tried to go back to work. I taught in a school

constructed in the early 1970's -- and my classroom was the mold culprit.I kept

a

horrible cough for several months -- sounded like a " smoker's cough " only I

have never smoked. I had to keep water/cough drops close by. I also had

mental fuzziness -- inability to concentrate or think clearly.Total lack of

energy/fatigue.I also had mental fuzziness -- inability to concentrate or think

clearly.Total lack of Mondays (after being home for the weekend would be

ok. By Wednesday, I'd be getting hoarse. By Friday, I had no voice above

a whisper and wrote most of my lessons on the board.

Since I got out of that environment (another whole story)...I am better.

But I still have all the symptoms of asthma. My energy level is still much

lower than it used to be. I am able to concentrate better, but not like I

used to be. And I find myself " clearing my throat " a lot more than I used

to have to.

So long as I dont get around my triggers, I can talk.

Silver in SC <><

October 28, 2009

I saw my Immunologist/allergist on Monday and he diagnosed me with the sick

building syndrom, therefore I will be taking some time off from the job b/c my

classroom ceiling along with the hallway and other rooms on the floor that I

work on are infested with mildew and mold due to a leaky roof and lots of rain.

I know in my heart this is where i got sick b/c is started about 2 months after

i was in the building and i have been suffering ever since. It is time i get out

of the building. thanks for responding.

Lana

From: dragonflymcs <dragonflymcs@...>

Subject: Re: [] Re: CFS

Date: Monday, October 26, 2009, 11:15 PM

Hi

Have you suffered mold exposure? Where? You really have to give more detail,

how you got sick, where (if you know) and what your list is of synptoms so

others here can try to help you sort this out. Even if it is exahusting to write

them all it will give a better picture for us. Thank you !

God Bless !!

dragonflymcs

Mayleen

____________ _________ _________ __

From: Lana Deville <lcdeville (DOT) com>

Sent: Mon, October 26, 2009 11:42:14 PM

Subject: Re: [] Re: CFS

My list of symptoms are many!

CFS, memory loss (confusion), severe headaches, bruising, sinus problems, fever

and chills, flu like symptoms daily, extreme hoarseness, asthma (which I never

have had before), high blood pressure (which I never had before), and I could go

on and on!

October 29, 2009

Hi,

Sorry I had not responded. I am supprised an immunologist would diagnose you

but that is another story. If your work made you ill you will most likely not

be able to go back there not under those conditions. Re-exposure is worst than

the first time.

It takes time to recover from this. You need aDR who specializes in mold

exposure. There is one in Tx, Fl, NM, SC, Md, several to choose from. There is

no easy solution or easy fix. It takes time to recover and you need to be

tested to see what is wrong. Sorry.

If any of these are near you, yo can see them. If you can trave to them, some

have p;laces to stay while you get treated.

http://www.biotoxin.info/

God Bless !!

dragonflymcs

Mayleen

________________________________

From: Lana Deville <lcdeville@...>

Sent: Tue, October 27, 2009 11:41:16 PM

Subject: Re: [] Re: CFS

I saw my Immunologist/ allergist on Monday and he diagnosed me with the sick

building syndrom, therefore I will be taking some time off from the job b/c my

classroom ceiling along with the hallway and other rooms on the floor that I

work on are infested with mildew and mold due to a leaky roof and lots of rain.

I know in my heart this is where i got sick b/c is started about 2 months after

i was in the building and i have been suffering ever since. It is time i get out

of the building. thanks for responding.

Lana

From: dragonflymcs <dragonflymcs>

Subject: Re: [] Re: CFS

Date: Monday, October 26, 2009, 11:15 PM

Hi

Have you suffered mold exposure? Where? You really have to give more detail,

how you got sick, where (if you know) and what your list is of synptoms so

others here can try to help you sort this out. Even if it is exahusting to write

them all it will give a better picture for us. Thank you !

God Bless !!

dragonflymcs

Mayleen

____________ _________ _________ __

From: Lana Deville <lcdeville (DOT) com>

Sent: Mon, October 26, 2009 11:42:14 PM

Subject: Re: [] Re: CFS

My list of symptoms are many!

CFS, memory loss (confusion), severe headaches, bruising, sinus problems, fever

and chills, flu like symptoms daily, extreme hoarseness, asthma (which I never

have had before), high blood pressure (which I never had before), and I could go

on and on!

October 30, 2009

I didn't have a chance to look at the video that was linked in the first posting

of this string (below), until the night of Thursday, October 29th. When I

clicked on the link, YouTube said " This video was removed by the user " . I've

never seen those words before, on YouTube. Conspiracy theory anyone?????????

Was I the only one who's head spun around on his neck, when, in a later posting

on this string, a new member said that her allergist/immunologist diagnosed her

as having " sickbuilding syndrome " ? Finding such a doctor is as rare as finding a

four-leaf-clover. I suggest that anyone who has found such a doctor, should give

us the doctor's name and phone number, as many of us are still looking for a

doctor who, when we give our symptoms, and our belief that toxic mold was the

cause of them, doesn't look at us as if we should be pitied, or ignored, for

being " mentally unbalanced " .

This same new member said that she was taking " an extended leave of absence "

from her job, which was the source of her mold exposure. I hope that she was

using a euphemism for " I know that I'm a DEAD PERSON if I EVER return to that

job. " If she learns only ONE thing from following the postings on this board, it

should be that once you've had a toxic mold reaction, you are a " moldie " for the

rest of your life, and the slightest amount of re-exposure to mold, or

chemicals, will return you to the terrible symptoms that you experienced from

your first mold exposure. I don't mean to sound harsh, but she should know that

she should start planning the rest of her life, NOW, on the certainty that her

moldy job is gone forever. In this economy, that's a terrible realization. But,

all of her medical, disability, and legal steps should be begun with that

realization.

I wish her a speedy recovery, and the best of luck, as she is one of us. She is

in the right place, being here, and I'm sure that we all welcome her as a new

friend.

Joe

.............................................

>

> _http://www.youtube.com/watch?v=oUcJad6w-XQ & feature=related_

> (http://www.youtube.com/watch?v=oUcJad6w-XQ & feature=related)

>

> Turn into this video!! He has all the symptoms I had and more.

> Most of us can probably relate to his story.

>

> Sue

October 30, 2009

I left my job and was making 50000 a year becaose I got sick.My allergist

told me i had sick building syndrome. She is Dr Forrest in Rochester , NH.

In a message dated 10/30/2009 7:45:26 A.M. Eastern Daylight Time,

josephsalowitz@... writes:

I didn't have a chance to look at the video that was linked in the first

posting of this string (below), until the night of Thursday, October 29th.

When I clicked on the link, YouTube said " This video was removed by the

user " . I've never seen those words before, on YouTube. Conspiracy theory

anyone??????I d

October 30, 2009

I head is still spinning about it. I briefly made a comment

God Bless !!

dragonflymcs

Mayleen

________________________________

From: joe <josephsalowitz@...>

Sent: Fri, October 30, 2009 12:03:06 AM

Subject: [] Re: CFS

I didn't have a chance to look at the video that was linked in the first posting

of this string (below), until the night of Thursday, October 29th. When I

clicked on the link, YouTube said " This video was removed by the user " . I've

never seen those words before, on YouTube. Conspiracy theory anyone?????? ???

Was I the only one who's head spun around on his neck, when, in a later posting

on this string, a new member said that her allergist/immunolog ist diagnosed her