Re: FDA's Efforts to validate Fibromyalgia



blinded wrote:
You sound hostile, I only questioned you for two reasons, first I
would like an answer and second, why are you so very evasive.

I gave you all the information below as an after thought that you need. You
must not have read it or just do not understand it.

I have excellent doctors, the only problem was finding another Pain
Specialist. When I called them all I heard was that they are
accepting no new patients.

I waited months for one and just blew them off because I know now that I do
not hurt all over the will not do a thing. Besides I should not have to go
to a pain clinic when the doctors have not followed through fully.

I know damn well that they are accepting new patients. Doctors are a
business and the only reasons to not accept a new patient is that the
patient sues a lot or they do not want to accept the insurance
company the patient uses.

Pain clinics get too many drug seekers and you are right,most will not take
certain insurance companies and third you can thank the FDA and the seekers
for not being able to be seen.

Well, I found a new Pain Specialist and will determine if I want to
continue with him after I meet him. My current doctor, keeps
speaking of retirement and wants me to find someone else before he
leaves. I have been going to him for over 25 years and he lives in a
different state, since I retired here. I still fly up for my
appointments.

Fly up for your appointments? Now I am sure the whole group here some who
drive 2 hours or more each way are laughing. If you can afford to fly then
you can afford to get the right doctors.

You spent a lot of typing excuses for not sharing
your information. I am sure that if you added up all the pages you typed
to explain why
you won't take the time to type out the information that was asked of
you, you would have time to spare if you had actually answered the
questions asked. You apparently spent a lot of time
copying/paraphrasing someone else's information or cut/pasting the
information.

1. I don't need to share all my personal medical history online in an alt
group. 2. The information which is supplied by my doctors group is mirrored
by other doctors and there are many of us who are now doing much better so
there is no need for me to retype it all.

I have read your posts for many many months/years and what you posted
below is not the style of your normal speech or speech patterns.

Hmm glad you have noticed and thank you for confirming what I and others
here already know. If you have spent that "many months" watching me then you
would know that speech and thought and memory is just a few of the senses I
have gotten back.
Next you would have definitely noticed the link I posted to the doctors
group that all of you have access to, especially those of you who fly in to
see your doctor. <g>

I would really like to know the REAL reason that you do not share
this information. I have read what you said, but know there is some
real reason that you are not revealing to the rest of us.

You must not follow me too well after watching me all these months. I guess
you forgot to reply to the post were I told you to look up the word
*malpractice*.

I have
my suspicions, but it is probably inappropriate to broadcast them. I
do not want to be mistaken for a troll and I would.
You have always appeared to be open about your treatments in the
past, sometimes to the extreme. But there is some reason that you do
not want to tell anyone the truth about what is going on with you.

I did tell people prior in the NG what I have found. And then in private
what was found.
You must have missed "The *mix* of treatments needed *varies* from patient
to patient based on what abnormalities are present and how progressed the
condition,".

I am not calling you a liar, I do not think that you lied. But you
are not telling anyone what you are really doing to feel better.
Sure, no two people are alike. But many times I have asked my
doctors questions based on information I read in the ngs. Sometimes
he would try the suggestion and other times would tell me that it was
not practical.

Sounds like you need to give the group I listed a try. Yes I went to a place
that has Fibromyalgia in the office name and to me that was hokey but they
found what I do not have (In my mind and others) and they along with another
friend told me to stop saying I don't have FMS & CFS but they know the root
cause in me.

As you are not a doctor, I would appreciate the information from you
and let the doctors decide what is and is not appropriate in my case.

All the information you need is below, copy and paste it to word and print
it. Then spend months trying to find and put together all the right doctors
you will need and good luck in trying to get them to believe all of what is
below or you can just go to the one clinic (several around the country) and
not get hassled and be on your way (hopefully) to feeling better.

OR is it time I stop asking. Either you are not going to share
this information with the people here or smoke is being blown up our
collective butts.

Smoke? LOL you have no clue how many people know how much better I'm doing.
I didn't come online till afternoon because I was up at 8AM and went for a
bike ride till it started raining a little while ago.


What I have written is not BS and if I thought I knew it all, I would
not be looking for information

http://www.fibroandfatigue.com/ for the last time. If you want to continue
to claim I am blowing smoke then that is your right. I'm not the one sitting
around all the time in constant pain.

CB




"Cheeky ***" <InvalidEmail@xxxxxxx> wrote in message
news:eUVoi.52185$5j1.42846@xxxxxxxxxxxxxxxxxxxxxxxxxxxxx


blinded wrote: BS and thinks they know it all.

Chronic Fatigue syndrome (CFS) and Fibromyalgia (FM) are illnesses
that often coexists and affect millions of Americans. Symptoms vary
amongst individuals and commonly include severe fatigue, sleep
disturbances, cognitive problems, commonly called brain fog, muscle
pain and multiple infections. Unfortunately, many individuals and
physicians continue to *deny* that these syndromes are legitimate
diseases. The medical literature is, however, very clear that these
are legitimate diseases and individuals with these syndromes have
*measurable* hypothalamic, pituitary, immune and coagulation
dysfunction. These abnormalities then *result* in a cascade of
further abnormalities, in which stress plays a role by suppressing
immunity and hypothalamic-pituitary function. The pituitary and
hypothalamic dysfunction results in *multiple* hormonal deficiencies
that are often *not* *detected* with *standard* blood tests, and
autonomic dysfunction, including neurally mediated hypotension. The
immune dysfunction, which includes natural killer cell dysfunction,
results in opportunistic infections and yeast overgrowth, resulting
in worsening of symptoms. Recent studies have shown that the
coagulation dysfunction is usually initiated by a viral infection
and has a genetic predisposition. This abnormal coagulation results
in *increased* blood viscosity (slugging) and a deposition of
soluble *fibrin* *monomers* along the capillary wall. This *results*
in tissue and *cellular* *hypoxia*, resulting in fatigue, and
decreased cognition (brain fog). Neurotransmitter abnormalities and
macro and micro nutrient deficiencies have also been shown to occur
with these disorders. (Learn anything so far?) *Reactivating* viruses
combined with suppressed immunity is a common
thread amongst CFS and FM patients. Current research suggests that
many triggers can initiate a cascade of events, causing the
hypothalamic, pituitary, immune and coagulation dysfunction. The
most common initiating cause is a viral infection, which is very
commonly Epstein Bar Virus, Cytomegalovirus or HHV6. When
*specialized* *testing* is utilized, these infections are found in
30-80% of CFS and FM patients, and many people with these syndromes
can pinpoint the start of their disease to a viral infection that
never got better usually during significant life stressors. *Effective*
treatment, with 80 to 90 percent of individuals
*achieving* *significant* clinical benefits, can be achieved by
*simultaneously*
treating the above problems that an *individual* (No two people are
alike) is found to have. The *mix* of treatments needed *varies*
from patient to patient based on what abnormalities are present and
how progressed the condition, but there but there is consistent
abnormal pathophysiology. For instance, a high percentage of
individuals with these syndromes have low thyroid. This is, however,
usually not picked up on the standard blood tests because the TSH is
not elevated in these individuals because of pituitary dysfunction.
Many of these individuals will also have high levels of the
anti-thyroid reverse T3, which is usually *not* measured on standard
blood tests. In addition, the majority of individuals can also have
a thyroid receptor resistance that is not detected on the blood
tests. Consequently, thyroid treatment, especially with timed
release T3 is effective for many patients. T4 preparations (inactive
thyroid) such as Synthroid and Levoxyl do *not* work well for these
conditions. *Adrenal* *insufficiency* and *growth* *hormone*
deficiency are also very common with these disorders, and
supplementation with these hormones can often have *profound*
effects. As with thyroid testing, these deficiencies are,
unfortunately, usually not detected with the standard screen blood
tests and require more *specific* testing. (Yeah 80 vials of blood)
Although a concept that is sometimes uncomfortable and foreign to
traditional medical styles of thinking, the need for multiple
interventions is required for effective treatment of an illness that
affects a critical control center (such as the hypothalamus), which
impacts the multiple systems noted above. Unfortunately, there is
*not* a *single* treatment that reverses hypothalamic dysfunction
directly. Thus, this situation is different from illnesses that
affect a single target organ and which can be treated with a single
intervention. For example, pituitary dysfunction itself often
requires treatment with *several* hormones. This effect is
multiplied in hypothalamic dysfunction, which affects several
critical systems in addition to the pituitary gland. An integrated
treatment approach based on simultaneously treating the above
problems is significantly beneficial in CFS and FMS. Individuals
with these devastating syndromes *can* "get their lives back"
despite the fact that they were previously told, "There is nothing
that can be done," or "It is all in your head." Although a concept that
is sometimes uncomfortable and foreign to
traditional medical styles of thinking, the need for multiple
interventions is effective when an illness affects a critical control
center.

Now "blinded" go try and find a doctor that knows his or her ass
from a hole in the ground and *maybe* you will see the light again.
As I have posted this information is nothing new and I listend to a
group who dismissed all this. Well today I am doing much better and
as I have mentioned "good luck" in finding doctors that know how to
treat multible things at once unless you pay them enough that you
are paying more than the drug companies. IE; pay them enough amd you
are the winner and the don't have to nickle and dime you with many
office visits. I now know of doctors in Boston that are ditching
patients if they do not have $3,600 a year to belong to "the club"
and still pay the office visit. Why? Because they know 15 minutes is
not enough time to get to know a patient. Can't afford this? Then do like
I have been doing and find a way!

CB


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