Chronic Fatique Syndrom - Newbie here....Hello Everyone!

Author

Newbie here....Hello Everyone!

Mf *

2006-09-15, 4:20 pm

Hi All, my name is Maria, I live in Southern NH and have been battling
CFIDS for 25 of my 43 years.

Like most of you I imagine, I've tried just about everything to no avial,
the list is endless and the money I have spent is wasted, I could have
owned a luxury home on the ocean by now!

I finally smartened up and decided to apply for Social Security Disability
after taking early retirement from my stressful corporate job. I've not
worked full time in 3 years now and feel sicker than ever.

I found this site and think it's a great tool but I find myself
overwhelmed with information and I'm not sure where to begin. I guess I'm
searching for a new approach as everything else has failed. My bloodwork
results are always negative but I continue to suffer with the following
symptoms...

BRAIN FOG
Debilitating Fatigue
Muscle Weakness
Depression
Anxiety
Candidiasis (yeast)
Food/Chemical Sensitivities
Leaky Gut
Constipation
Halitosis
Pallor
Low body temp
Hot flashes
Irritability
Mood swings
Loss of Libido
Irritated Bladder/frequent Infections
Easily Overwhelmed
INSOMNIA
Fibromyalgia
Dry hair/skin/nails
Easy bruising
Malais

I'm sure there are more, this is off the top of my clouded head.

What I've tried with little relief...

Conventional MD (hundreds...)
Holistic ND (many, many...)
Acupuncture
Chiropractors
Osteopath
Homeopath
Iridology (peering into the Iris for hours...)
Intravenous Vitamin C
Mega doses of Vitamin supplements (any and all)
Hyperbaric Oxygen Treatments (short term relief of fatigue and brain fog)
Anti-Depressants
Anti-Anxiety meds
Sleeping pills
Beta Blockers (for panick attacks)
Klonopin (my wonder drug, but short lived)

I am looking for any and all input as I've reached the end of my rope
several times and contemplated suicide. On a good day (which are few),
I'm told I'm attractive, vibrant, witty, bubbly etc. On a bad day, I feel
worthless and my self esteem has plummeted.

I'm interested in finding a doctor in MA or NH that is at least
knowledgeable in CFIDS and is willing to perform the proper tests needed
to prove to Social Security that I am indeed unable to work. I've been
denied and decided to appeal with the help of an attorney.

Also, does anybody know how to read the results for EBV? I have doctors
reading the exact results and giving me 2 different answers. One says the
virus is active, the other says it is not but I have past infection.

I can supply the information if anyone knows what these numbers mean.

Is there any other tests that a conventional MD can do to determine CFS?

I used to know the answers to these very questions but I can't even
remember where I've stored the information.

Sorry for the length of this note, I'm hoping someone can shed some light
and give me some hope back.

My dream is to one day lick this thing or at least have it under control
and be able to help others that are suffering and don't know where to turn.

I empathize with each and every one of you and wish you all the best in
health!

Thanks for taking the time!

Maria

Wendi Carrillo

2006-09-15, 4:20 pm

Maria, maria.. We're definitely with you and hear you!

First off, are you treating yourself for thyroid issues. Seventy-five percent sounds like what I was going through when I found out I had Hashimoto's Thyroiditis. CFS=EBV is one thing, but the whole entire endocrine system gets slammed with issues when
bogged down with EBV. I'm personally not on thyroid meds, as I'm treating mine naturally, but many are on meds and that at least helps alleviate the hypothyroid issues.

I have my EBV numbers but different labs show different scales and it's hard to keep track. You most likely have EBV active if you feel this bad. Even though my labs said my titers were through the roof, the actual theory was that it was a past infectio
n. Past or not, I had it!

Hope you get to feeling better. Hopefully someone here in the Mass area knows a good MD.

Take Care -

Wendi

Mf * <mfalz@VERIZON.NET> wrote:
Hi All, my name is Maria, I live in Southern NH and have been battling
CFIDS for 25 of my 43 years.

Like most of you I imagine, I've tried just about everything to no avial,
the list is endless and the money I have spent is wasted, I could have
owned a luxury home on the ocean by now!

I finally smartened up and decided to apply for Social Security Disability
after taking early retirement from my stressful corporate job. I've not
worked full time in 3 years now and feel sicker than ever.

I found this site and think it's a great tool but I find myself
overwhelmed with information and I'm not sure where to begin. I guess I'm
searching for a new approach as everything else has failed. My bloodwork
results are always negative but I continue to suffer with the following
symptoms...

BRAIN FOG
Debilitating Fatigue
Muscle Weakness
Depression
Anxiety
Candidiasis (yeast)
Food/Chemical Sensitivities
Leaky Gut
Constipation
Halitosis
Pallor
Low body temp
Hot flashes
Irritability
Mood swings
Loss of Libido
Irritated Bladder/frequent Infections
Easily Overwhelmed
INSOMNIA
Fibromyalgia
Dry hair/skin/nails
Easy bruising
Malais

I'm sure there are more, this is off the top of my clouded head.

What I've tried with little relief...

Conventional MD (hundreds...)
Holistic ND (many, many...)
Acupuncture
Chiropractors
Osteopath
Homeopath
Iridology (peering into the Iris for hours...)
Intravenous Vitamin C
Mega doses of Vitamin supplements (any and all)
Hyperbaric Oxygen Treatments (short term relief of fatigue and brain fog)
Anti-Depressants
Anti-Anxiety meds
Sleeping pills
Beta Blockers (for panick attacks)
Klonopin (my wonder drug, but short lived)

I am looking for any and all input as I've reached the end of my rope
several times and contemplated suicide. On a good day (which are few),
I'm told I'm attractive, vibrant, witty, bubbly etc. On a bad day, I feel
worthless and my self esteem has plummeted.

I'm interested in finding a doctor in MA or NH that is at least
knowledgeable in CFIDS and is willing to perform the proper tests needed
to prove to Social Security that I am indeed unable to work. I've been
denied and decided to appeal with the help of an attorney.

Also, does anybody know how to read the results for EBV? I have doctors
reading the exact results and giving me 2 different answers. One says the
virus is active, the other says it is not but I have past infection.

I can supply the information if anyone knows what these numbers mean.

Is there any other tests that a conventional MD can do to determine CFS?

I used to know the answers to these very questions but I can't even
remember where I've stored the information.

Sorry for the length of this note, I'm hoping someone can shed some light
and give me some hope back.

My dream is to one day lick this thing or at least have it under control
and be able to help others that are suffering and don't know where to turn.

I empathize with each and every one of you and wish you all the best in
health!

Thanks for taking the time!

Maria

---------------------------------
Get your email and more, right on the new Yahoo.com

2006-09-15, 4:20 pm

Wendi,
Thanks so much for your reply. My TSH level is 2.0 so my doctor will not put me on Thyroid meds but in the past when I took Armour Thyroid per a diff MD, I felt more energy initially. Could it be that my Thyroid and Estrogen levels are off though my t
ests don't show it?

Thanks again,
Maria

Wendi Carrillo <tres_gatos87801@YAHOO.COM> wrote:
Maria, maria.. We're definitely with you and hear you!

First off, are you treating yourself for thyroid issues. Seventy-five percent sounds like what I was going through when I found out I had Hashimoto's Thyroiditis. CFS=EBV is one thing, but the whole entire endocrine system gets slammed with issues when bo
gged down with EBV. I'm personally not on thyroid meds, as I'm treating mine naturally, but many are on meds and that at least helps alleviate the hypothyroid issues.

I have my EBV numbers but different labs show different scales and it's hard to keep track. You most likely have EBV active if you feel this bad. Even though my labs said my titers were through the roof, the actual theory was that it was a past infection.
Past or not, I had it!

Hope you get to feeling better. Hopefully someone here in the Mass area knows a good MD.

Take Care -

Wendi

Mf * wrote:
Hi All, my name is Maria, I live in Southern NH and have been battling
CFIDS for 25 of my 43 years.

Like most of you I imagine, I've tried just about everything to no avial,
the list is endless and the money I have spent is wasted, I could have
owned a luxury home on the ocean by now!

I finally smartened up and decided to apply for Social Security Disability
after taking early retirement from my stressful corporate job. I've not
worked full time in 3 years now and feel sicker than ever.

I found this site and think it's a great tool but I find myself
overwhelmed with information and I'm not sure where to begin. I guess I'm
searching for a new approach as everything else has failed. My bloodwork
results are always negative but I continue to suffer with the following
symptoms...

BRAIN FOG
Debilitating Fatigue
Muscle Weakness
Depression
Anxiety
Candidiasis (yeast)
Food/Chemical Sensitivities
Leaky Gut
Constipation
Halitosis
Pallor
Low body temp
Hot flashes
Irritability
Mood swings
Loss of Libido
Irritated Bladder/frequent Infections
Easily Overwhelmed
INSOMNIA
Fibromyalgia
Dry hair/skin/nails
Easy bruising
Malais

I'm sure there are more, this is off the top of my clouded head.

What I've tried with little relief...

Conventional MD (hundreds...)
Holistic ND (many, many...)
Acupuncture
Chiropractors
Osteopath
Homeopath
Iridology (peering into the Iris for hours...)
Intravenous Vitamin C
Mega doses of Vitamin supplements (any and all)
Hyperbaric Oxygen Treatments (short term relief of fatigue and brain fog)
Anti-Depressants
Anti-Anxiety meds
Sleeping pills
Beta Blockers (for panick attacks)
Klonopin (my wonder drug, but short lived)

I am looking for any and all input as I've reached the end of my rope
several times and contemplated suicide. On a good day (which are few),
I'm told I'm attractive, vibrant, witty, bubbly etc. On a bad day, I feel
worthless and my self esteem has plummeted.

I'm interested in finding a doctor in MA or NH that is at least
knowledgeable in CFIDS and is willing to perform the proper tests needed
to prove to Social Security that I am indeed unable to work. I've been
denied and decided to appeal with the help of an attorney.

Also, does anybody know how to read the results for EBV? I have doctors
reading the exact results and giving me 2 different answers. One says the
virus is active, the other says it is not but I have past infection.

I can supply the information if anyone knows what these numbers mean.

Is there any other tests that a conventional MD can do to determine CFS?

I used to know the answers to these very questions but I can't even
remember where I've stored the information.

Sorry for the length of this note, I'm hoping someone can shed some light
and give me some hope back.

My dream is to one day lick this thing or at least have it under control
and be able to help others that are suffering and don't know where to turn.

I empathize with each and every one of you and wish you all the best in
health!

Thanks for taking the time!

Maria

---------------------------------
Get your email and more, right on the new Yahoo.com

Cilla O'Brien

2006-09-15, 4:20 pm

Welcome Maria,

I, too, am a newbie, having joined a week or so ago. I was diagnosed in
April 2005 after many months of debilitating fatigue & all the other fun stuff
that comes a long with CFS.

I have found the folks here to be very open & they seem to have a wealth of
information. I hope that your experience here will be as helpful, as I have so
far. To me, the biggest thing was finding a group of people that actually
have CFS, so I can share what's going on with others who KNOW what I'm talking
about.

Take care,
cilla in NC

"This disease, this syndrome, is actually more debilitating than just about
any other medical problem in the world"
Professor Leonard Jason, professor of psychology at DePaul University, USA
US Department of Health and Human Services' (HHS) committee on chronic
fatigue syndrome (CFS)

2006-09-15, 4:20 pm

Thanks so much Cilla, this is looking promising already!

: )

Cilla O'Brien <MtnCilla@AOL.COM> wrote:
Welcome Maria,

I, too, am a newbie, having joined a week or so ago. I was diagnosed in
April 2005 after many months of debilitating fatigue & all the other fun stuff
that comes a long with CFS.

I have found the folks here to be very open & they seem to have a wealth of
information. I hope that your experience here will be as helpful, as I have so
far. To me, the biggest thing was finding a group of people that actually
have CFS, so I can share what's going on with others who KNOW what I'm talking
about.

Take care,
cilla in NC

"This disease, this syndrome, is actually more debilitating than just about
any other medical problem in the world"
Professor Leonard Jason, professor of psychology at DePaul University, USA
US Department of Health and Human Services' (HHS) committee on chronic
fatigue syndrome (CFS)

Wendi Carrillo

2006-09-15, 4:20 pm

Have you been checked for Hashimoto's Antibodies though??? My TSH goes normal to borderline, so yeah, until someone noticed my goiter (which NOT everyone has with Hashimotos) they didn't test for the Hashimotos. If you have Hashimoto's then your TSH doesn
't mean everything. It means something, but not entirely. If you have Hashi's then your TSH will swing high to low and who knows where you were at when they took your blood test. Your symptoms are SO characteristically hypothyroid.. But your endocrine sys
tem is taxed with this disease so you could have hormonal issues anyhow. My progesterone was so low you wouldn't have believed it. I was going hormonally insane. I'm balancing out now with only a few mild issues.

I'd ask for a full-panel thyroid test and also to check your hormone levels (DHEA, Progesterone, and Estrogen). If your doc gives you crap and says you don't need it, go to your OBGYN. They are better with women anyhow and don't usually question this s
tuff. I was laughed out of my MD's office EVEN though I had a goiter and was asking for anti-anxiety meds. He wouldn't get me the full-panel but he easily dispensed Xanax. I have few kind words for him right now.

Keep us Updated!

mf <mfalz@VERIZON.NET> wrote:
Wendi,
Thanks so much for your reply. My TSH level is 2.0 so my doctor will not put me on Thyroid meds but in the past when I took Armour Thyroid per a diff MD, I felt more energy initially. Could it be that my Thyroid and Estrogen levels are off though my tests
don't show it?

Thanks again,
Maria

Wendi Carrillo wrote:
Maria, maria.. We're definitely with you and hear you!

First off, are you treating yourself for thyroid issues. Seventy-five percent sounds like what I was going through when I found out I had Hashimoto's Thyroiditis. CFS=EBV is one thing, but the whole entire endocrine system gets slammed with issues when bo
gged down with EBV. I'm personally not on thyroid meds, as I'm treating mine naturally, but many are on meds and that at least helps alleviate the hypothyroid issues.

I have my EBV numbers but different labs show different scales and it's hard to keep track. You most likely have EBV active if you feel this bad. Even though my labs said my titers were through the roof, the actual theory was that it was a past infection.
Past or not, I had it!

Hope you get to feeling better. Hopefully someone here in the Mass area knows a good MD.

Take Care -

Wendi

Mf * wrote:
Hi All, my name is Maria, I live in Southern NH and have been battling
CFIDS for 25 of my 43 years.

Like most of you I imagine, I've tried just about everything to no avial,
the list is endless and the money I have spent is wasted, I could have
owned a luxury home on the ocean by now!

I finally smartened up and decided to apply for Social Security Disability
after taking early retirement from my stressful corporate job. I've not
worked full time in 3 years now and feel sicker than ever.

I found this site and think it's a great tool but I find myself
overwhelmed with information and I'm not sure where to begin. I guess I'm
searching for a new approach as everything else has failed. My bloodwork
results are always negative but I continue to suffer with the following
symptoms...

BRAIN FOG
Debilitating Fatigue
Muscle Weakness
Depression
Anxiety
Candidiasis (yeast)
Food/Chemical Sensitivities
Leaky Gut
Constipation
Halitosis
Pallor
Low body temp
Hot flashes
Irritability
Mood swings
Loss of Libido
Irritated Bladder/frequent Infections
Easily Overwhelmed
INSOMNIA
Fibromyalgia
Dry hair/skin/nails
Easy bruising
Malais

I'm sure there are more, this is off the top of my clouded head.

What I've tried with little relief...

Conventional MD (hundreds...)
Holistic ND (many, many...)
Acupuncture
Chiropractors
Osteopath
Homeopath
Iridology (peering into the Iris for hours...)
Intravenous Vitamin C
Mega doses of Vitamin supplements (any and all)
Hyperbaric Oxygen Treatments (short term relief of fatigue and brain fog)
Anti-Depressants
Anti-Anxiety meds
Sleeping pills
Beta Blockers (for panick attacks)
Klonopin (my wonder drug, but short lived)

I am looking for any and all input as I've reached the end of my rope
several times and contemplated suicide. On a good day (which are few),
I'm told I'm attractive, vibrant, witty, bubbly etc. On a bad day, I feel
worthless and my self esteem has plummeted.

I'm interested in finding a doctor in MA or NH that is at least
knowledgeable in CFIDS and is willing to perform the proper tests needed
to prove to Social Security that I am indeed unable to work. I've been
denied and decided to appeal with the help of an attorney.

Also, does anybody know how to read the results for EBV? I have doctors
reading the exact results and giving me 2 different answers. One says the
virus is active, the other says it is not but I have past infection.

I can supply the information if anyone knows what these numbers mean.

Is there any other tests that a conventional MD can do to determine CFS?

I used to know the answers to these very questions but I can't even
remember where I've stored the information.

Sorry for the length of this note, I'm hoping someone can shed some light
and give me some hope back.

My dream is to one day lick this thing or at least have it under control
and be able to help others that are suffering and don't know where to turn.

I empathize with each and every one of you and wish you all the best in
health!

Thanks for taking the time!

Maria

---------------------------------
Get your email and more, right on the new Yahoo.com

---------------------------------
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Get on board. You're invited to try the new Yahoo! Mail.

bobbie sellers

2006-09-15, 9:23 pm

Hi Wendi Carrillo & Maria, on 09/15/06, you wrote:

> Maria, maria.. We're definitely with you and hear you!
>
> First off, are you treating yourself for thyroid issues.
> Seventy-five percent sounds like what I was going through when
> I found out I had Hashimoto's Thyroiditis. CFS=EBV is one

[snipped because the message was too long]
I sent a 315 line reply which the server finds too long
so I have had to trim this version.

Well you don't have to have Hashimoto's to have a thyroid
problem. It seems that my body has forgotten how to do the
conversion of the storage form of thyroid hormone(T4) to the
form the body uses (T3).

If you need to work on getting back on Thyroid USP you
need to take your temperature every morning for a week to
figure out if it is habitually low. This is a sign of
need for thyroid supplementation regardless of your TSH.
Another is if you suffer symptoms like cold feet in warm
spaces.

There is an article in the New England Journal of Medicine
from a few years ago that explains to physicians why they should
treat people whose hypo-thyroid treatment (or lack thereof)
fails to relieve their symptoms. If you want a copy you
have to pay for it AFAIK.

The New England Journal of Medicine -- February 11, 1999 -- Vol. 340,
No. 6 Effects of Thyroxine as Compared with Thyroxine plus
Triiodothyronine in Patients with Hypothyroidism
Robertas Bunevicius, Gintautas Kazanavicius, Rimas Zalinkevicius,
Arthur J. Prange, Jr.

[snipped because the message was too long]>
> Take Care -
>
> Wendi

> Mf * <mfalz@VERIZON.NET> wrote:
> Hi All, my name is Maria, I live in Southern NH and have been
> battling CFIDS for 25 of my 43 years.

> Like most of you I imagine, I've tried just about everything to
> no avial, the list is endless and the money I have spent is
> wasted, I could have owned a luxury home on the ocean by now!

> I finally smartened up and decided to apply for Social Security
> Disability after taking early retirement from my stressful
> corporate job. I've not worked full time in 3 years now and
> feel sicker than ever.

> I found this site and think it's a great tool but I find myself
> overwhelmed with information and I'm not sure where to begin. I
> guess I'm searching for a new approach as everything else has
> failed. My bloodwork results are always negative but I continue
> to suffer with the following symptoms...

This isn;t a site but a mailing list echoed to a Usenet
newsgroup.

> BRAIN FOG

Is it worse after exertion? Mine is. I can really make
stupid mistakes easily after a brisk bit of exercise.

> Debilitating Fatigue

Are you resting after exertion? How long does it take for
your fatigue to diminish?

Best bet is up to 18 hours a day of rest. Agressive Rest
Therapy helps a lot. This is laying down on a bed without
much distraction.

> Muscle Weakness

Well if your cfids is like mine the fatigue poisons from
your exercise/exertions are not being detoxified and you
need to start on Undenatured Whey Protein Powder to help your
body rebuild its store of glutathione. If you are using an
actominophen pain killer you need to move to somehign else
as acetominophen consumes a lot of glutathione.

> Depression

Well of course you are depressed. Your life as you knew
it has been yanked out from under your feet.

> Anxiety

Same as depression.

> Candidiasis (yeast)

You don't say where the infection is. But if you have a
GI tract or bowel infection it can be tremendously debilitating.
If you cannot find a physician to prescribe anti-fungal
medications then you may have to remove all fermentable food
from your diet.
You might want a trial on tea made from Pau d'Arco bark
which is a very good antifungal. I also used TwinLabs Yeast
Fighter capsules.

> Food/Chemical Sensitivities
> Leaky Gut

See Candidiasis which causes it. The leaky gut lets less
digested food molecules directly into your blood stream which
causes

> Constipation

Need to increase fibre in your diet.

> Halitosis

Candidiasis again

> Pallor

Maybe related to poor mineral supplementation. Can you
eat liver? If not you need multiple mineral supplementation.
Most cfids patients do better with added magnesium per
magnesium malate which helps with something. You might want
to increase your calcium to about 1500 mg/day.

> Low body temp

Thyroid dysfunction.

> Hot flashes

How old are you? But I had night sweats that qualified
as hot flashes even on my Premarin just after the beginning of
the disease.

> Irritability
> Mood swings

Can relate to above or premature psuedo-menopause, due to
the load this illness has imposed. I am bipolar and have
felt better since starting a program of Nicin or Nicinamide
1000 mg per day and Vitamin C 1000 mg per day. These are
helpful to some people.

> Loss of Libido

No energy for the interaction and no delight in the exercise.
Depression by itself is enough to suppress the libido.

> Irritated Bladder/frequent Infections

Can be related to the food sensitivies. I had to give
up wheat. You might have to give up other frequently used food
items.

> Easily Overwhelmed

SOP for the person with Chronic Fatigue with Immune
Dysfunction.

> INSOMNIA

Well you cannot naturally exert yourself enough to rest.
I use Taurine 500 mg two or three times a day which is a great
help. Years ago I used another amino acid which was taken off
the market so that the FDA could demonstrate they know nothing
about the subject. 5-HTP is the overpriced version released for
public consumption.

> Fibromyalgia

Yes well that goes together with cfids like ham with eggs.
You might try self-massage rubbing the affected joints and
muscles before other exertion. I use a lot of Walgreen 's Ice
Blue Gel a generic for Icy Hot the national brand.

> Dry hair/skin/nails

ummm.

> Easy bruising

All my life and my mom had it too. Vitamin C might help.

> Malaise

Just means you feel ill and with that set of main symptoms
you will definitely feel ill.

> I'm sure there are more, this is off the top of my clouded
> head.

> What I've tried with little relief...

> Conventional MD (hundreds...) Holistic ND (many, many...)

Dr.Michael Lerner of Beverly Hills, Michigan a cardiologist
and diagnostician of great pussiance has cured at least one
former member of the group using anti-virual medication according
to the diagnosis of the virus causing an infection of the heart.
He cost $6000 for a diagnostic visit and is online, easily found
through google.com, the search engine.

[snipped because the message was too long]

> Vitamin C
> Mega doses of Vitamin supplements (any and all) Hyperbaric

Got to pick the right vitamins.

In addition to the stuff mentioned above I use B-50 caps
twice a day, Cod Liver Oil Caps for the vit D etc one cap one
day and two the next. Vitamin E 400 mg every other day and
Concentrated Fish (Body) Oil caps twice a day.

There is a whole therapy based on fish oil and oil of
baby primrose oil which involve taking such large quantities
of oil you have to work up to it to avoid bowel problems.

I also forgot to say that for supplementation people with
cfids should avoid citrate based supplements. When my physician
told me to take 1500 mg of calcium supplementation a day, about
twice what I had been takin, I tried to use calcium citrate
and the result was that my endurance fell by 50%. I learned
about the problem with citrates from Doctor Cheney who has
been trying to come up with answers for CFIDS patients for
a bit longer than I have been sick (about 23 years now).

[snipped because the message was too long]

> I'm interested in finding a doctor in MA or NH that is at least
> knowledgeable in CFIDS and is willing to perform the proper
> tests needed to prove to Social Security that I am indeed
> unable to work. I've been denied and decided to appeal with the
> help of an attorney.

Other folks will know more about NH/MA than I.

[snipped because the message was too long]
> Maria

Well I have written about all the symptoms so I better give
your some more advice on dealing with some of them. I did
that and included a thyroid article reference among some other
things.

later and may your health improve.
Bobbie Sellers

--
bobbie sellers - an exhausted, retired nurse in San Francisco
bliss at california dot com

Do you support drug prohibition because it finances criminals
at home or because it finances terrorists abroad?
Question courtesy of: M. Simon September 21, 2001

Frecker777@AOL.COM

2006-09-15, 9:23 pm

Maria,
The one thing I can say is make sure you are fasting when getting your
thyroid testing done. For me, my TSH is near 9 when fasting, but can jump down to
a more normal 2-3 when not fasting; hence, many a docs have missed the
hypothyroidism diagnosis. I feel so much better since starting thyroid meds, not
great, but SO much better. Make sure you get the proper testing at the
proper time.

-Carrie

Ron phillips

2006-09-16, 8:21 am

Hello, Maria

There are several organisms that can cause the body to get into the CFIDS/ME 'vicious cycle'. Some are rare (Q-fever, etc.) and some are so common that no one believes they sometimes cause CFIDS/ME (EBV, etc.) There is one, however, that is extremely comm
on, but a stinker to detect: C. Pneumoniae.

About 25% of "young, healthy" blood donors have active, infective C. Pn. in their bloodstream. It is spread like a cold, by sneezing. You can get it time after time; the body makes antibodies but never becomes resistant. It infects the immune cells, the l
ining of the arteries, the liver, the heart, the brain.

It is associated with a number of conditions that are part of CFIDS/ME: heart dysrythmias and dystrophies, gall bladder disease, repeated infections (with no results in culture, it can only grow in living cells.) It is known to be involved in: interstitia
l cystitis, prostatitis, chronic sinusitis, and fibromyalgia, among others.

People with chronic C.Pn. vary widely in their response to antibiotics: people with more recent infections report temporary relief with antibiotics, people with more long-standing infections may have temporary worsening of their symptoms. A two week cour
se of doxycycline or azithromycin will usually kill all the bacteria that your doctor can detect by ordinary means.

Unfortunately, that still leaves a vast number of bacteria that can only be detected by some sophisticated procedures. Happily, they can be killed with a combination of cheap antibiotics. I'm serious -- they are cheap; no one makes much off the people who
are curing their CFS this way.

At www.cpnhelp.org, you can read about people who completely eliminated CFIDS/ME by using this protocol. "AstroDiana" is one, "Eric Johnson" is another. (Eric now runs 6 miles in 36 minutes, three years ago he had to rest up for hours after a trip down th
e hall to the bathroom.) I am working on it myself -- I am about 9 months into the protocol, and it saved my job.

It would seem like a typical huckster pitch, except for one thing: it is a non-profit deal. You just find a local doctor to prescribe and follow up. The protocol is publically documented on the site: anyone can do it. No one makes a dime, it's strictly vo
lunteers/fellow sufferers like myself (and maybe you, too) who build the site. I'm not a doctor, and although there are several doctors and nurses who use the site, they don't "run" the site: it's a community effort.

Please give it a once over before you spend another dime! I don't know if eliminating C.Pn. will always eliminate CFIDS/ME, but I do know this: those bugs aren't there to do YOU any good, and I am getting steadily better with every month on the protocol.

In August of 2005, I was riding my bike 12 miles every day. Then I started with CFIDS/ME. By January of 2006, I could only vacuum one room of the house per day. A trip to the library would wipe me out. Now I can vacuum the whole house AND go to the librar
y. I still can't ride, but that'll come. It's great to have hope, and even better to have measurable progress.

Ron

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2006-09-16, 4:21 pm

Great info Ron, I will definitely try this! I appreciate you taking the time!

Best in Health,
Maria

Ron phillips <tiltbike@YAHOO.COM> wrote:
Hello, Maria

There are several organisms that can cause the body to get into the CFIDS/ME 'vicious cycle'. Some are rare (Q-fever, etc.) and some are so common that no one believes they sometimes cause CFIDS/ME (EBV, etc.) There is one, however, that is extremely comm
on, but a stinker to detect: C. Pneumoniae.

About 25% of "young, healthy" blood donors have active, infective C. Pn. in their bloodstream. It is spread like a cold, by sneezing. You can get it time after time; the body makes antibodies but never becomes resistant. It infects the immune cells, the l
ining of the arteries, the liver, the heart, the brain.

It is associated with a number of conditions that are part of CFIDS/ME: heart dysrythmias and dystrophies, gall bladder disease, repeated infections (with no results in culture, it can only grow in living cells.) It is known to be involved in: interstitia
l cystitis, prostatitis, chronic sinusitis, and fibromyalgia, among others.

People with chronic C.Pn. vary widely in their response to antibiotics: people with more recent infections report temporary relief with antibiotics, people with more long-standing infections may have temporary worsening of their symptoms. A two week cours
e of doxycycline or azithromycin will usually kill all the bacteria that your doctor can detect by ordinary means.

Unfortunately, that still leaves a vast number of bacteria that can only be detected by some sophisticated procedures. Happily, they can be killed with a combination of cheap antibiotics. I'm serious -- they are cheap; no one makes much off the people who
are curing their CFS this way.

At www.cpnhelp.org, you can read about people who completely eliminated CFIDS/ME by using this protocol. "AstroDiana" is one, "Eric Johnson" is another. (Eric now runs 6 miles in 36 minutes, three years ago he had to rest up for hours after a trip down th
e hall to the bathroom.) I am working on it myself -- I am about 9 months into the protocol, and it saved my job.

It would seem like a typical huckster pitch, except for one thing: it is a non-profit deal. You just find a local doctor to prescribe and follow up. The protocol is publically documented on the site: anyone can do it. No one makes a dime, it's strictly vo
lunteers/fellow sufferers like myself (and maybe you, too) who build the site. I'm not a doctor, and although there are several doctors and nurses who use the site, they don't "run" the site: it's a community effort.

Please give it a once over before you spend another dime! I don't know if eliminating C.Pn. will always eliminate CFIDS/ME, but I do know this: those bugs aren't there to do YOU any good, and I am getting steadily better with every month on the protocol.

In August of 2005, I was riding my bike 12 miles every day. Then I started with CFIDS/ME. By January of 2006, I could only vacuum one room of the house per day. A trip to the library would wipe me out. Now I can vacuum the whole house AND go to the librar
y. I still can't ride, but that'll come. It's great to have hope, and even better to have measurable progress.

Ron

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AnneHillebrand

2006-09-18, 4:03 am

Ron - the link to CPN help site on your message has a comma after it, so it won't link automatically.

But thanks so much for sharing the site info.

Anne Hillebrand
Orlando, FL

Fibromyalgia's Medical Maverick

www.FibroFix.com

All free site. Reversing symptoms of FMS, CFS, RLS.

quote:
Originally posted by Ron phillips
Hello, Maria

There are several organisms that can cause the body to get into the CFIDS/ME 'vicious cycle'. Some are rare (Q-fever, etc.) and some are so common that no one believes they sometimes cause CFIDS/ME (EBV, etc.) There is one, however, that is extremely comm
on, but a stinker to detect: C. Pneumoniae.

About 25% of "young, healthy" blood donors have active, infective C. Pn. in their bloodstream. It is spread like a cold, by sneezing. You can get it time after time; the body makes antibodies but never becomes resistant. It infects the immune cells, the l
ining of the arteries, the liver, the heart, the brain.

It is associated with a number of conditions that are part of CFIDS/ME: heart dysrythmias and dystrophies, gall bladder disease, repeated infections (with no results in culture, it can only grow in living cells.) It is known to be involved in: interstitia
l cystitis, prostatitis, chronic sinusitis, and fibromyalgia, among others.

People with chronic C.Pn. vary widely in their response to antibiotics: people with more recent infections report temporary relief with antibiotics, people with more long-standing infections may have temporary worsening of their symptoms. A two week cour
se of doxycycline or azithromycin will usually kill all the bacteria that your doctor can detect by ordinary means.

Unfortunately, that still leaves a vast number of bacteria that can only be detected by some sophisticated procedures. Happily, they can be killed with a combination of cheap antibiotics. I'm serious -- they are cheap; no one makes much off the people who
are curing their CFS this way.

At www.cpnhelp.org, you can read about people who completely eliminated CFIDS/ME by using this protocol. "AstroDiana" is one, "Eric Johnson" is another. (Eric now runs 6 miles in 36 minutes, three years ago he had to rest up for hours after a trip down th
e hall to the bathroom.) I am working on it myself -- I am about 9 months into the protocol, and it saved my job.

It would seem like a typical huckster pitch, except for one thing: it is a non-profit deal. You just find a local doctor to prescribe and follow up. The protocol is publically documented on the site: anyone can do it. No one makes a dime, it's strictly vo
lunteers/fellow sufferers like myself (and maybe you, too) who build the site. I'm not a doctor, and although there are several doctors and nurses who use the site, they don't "run" the site: it's a community effort.

Please give it a once over before you spend another dime! I don't know if eliminating C.Pn. will always eliminate CFIDS/ME, but I do know this: those bugs aren't there to do YOU any good, and I am getting steadily better with every month on the protocol.

In August of 2005, I was riding my bike 12 miles every day. Then I started with CFIDS/ME. By January of 2006, I could only vacuum one room of the house per day. A trip to the library would wipe me out. Now I can vacuum the whole house AND go to the librar
y. I still can't ride, but that'll come. It's great to have hope, and even better to have measurable progress.

Ron

---------------------------------
Do you Yahoo!?
Everyone is raving about the all-new Yahoo! Mail.

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