CFS/FM and other complicated cases

[Guest guest]

Victoria's posting brings up many interesting points that might be of

value to discuss as others here have similar experiences. I have

written a long letter here dealing with yin fire disorders and of

course this will not be of interest to everyone. Hopefully it will

give encouragement to many – this disease is curable.

 

The category of diseases that have developed as common conditions in

the modern world that we call names such as CFS – FM – Candida

infection – generalized stress disorder – syndrome X – Epstein Barr

infection – etc – are actually the same disease – but as we can see

the symptom picture might be radically different for different

people. Even with each syndrome each patient might have radically

different experiences of their disease. Also at different stages of

the disease the symptom picture might change radically. This disease

can begin innocently and ordinarily and end up as a horribly

debilitating disorder that spoils the life of millions. This often

causes confusion in peoples minds – many have the opinion that their

disease is unlike others and has it's own personal quality that sets

them apart. This is true but there are points of similarity in all of

the cases – this is why it is clear that these different symptom

pictures actually represent the same general disease patterns in

individual ways. Since this is a common disease and one that has been

described hundreds of years ago by great physicians with a full

understanding of the therapeutic protocols that are necessary to

correct it – it is useful to try to understand the issues involved.

This disease has always been common in society but has become endemic

in certain modern populations..

 

One important point to keep in mind is that this disease occurs in

each individual in steps and phases. The symptom picture at one time

in life might be very different a year or ten years later. Also of

course this disease has its cycles – certain symptoms might be very

important at one time and not so at another – while at the same time

perhaps another set of symptoms have taken over as the dominant ones.

Because of this many people diagnose their disease differently at

different times – physicians might do the same thing. But if we pay

attention we will begin to see the underlying themes – there is

actually great consistency within each individual as well as within

the general category of these diseases.

 

 

****** Victoria wrote = In my case (don't know about others) the

lower my body temperature

was, the sicker I was. The two happened together. I'm purposely

avoiding language that one caused the other because I don't know

that there is a cause-effect influence of one on the other. I just

know they happened at the same time.****

 

Of course the lower our body temperature the worse the symptoms.

Human body is meant to function at a very narrow range of temperature

and any variation in this indicates that something has gone wrong

with the temperature regulating functions of the body. The

temperature of healthy people does not vary very much. And there is

good reason for this. When the temperature falls below 98.2 over

forty of the most important enzymes responsible for energy production

either stop functioning or they slow down in their efficiency. This

radically slows down cellular functions. Every metabolic function

slows down. As the temperature continues to fall even more functions

slow until at very low temps – say below 97 the cells are not using

energy well at all and the area surrounding the cell becomes clogged

with phlegm and other poorly metabolized substances and toxins. All

of these cases have phlegm as a major complication. Phlegm is cold,

damp, viscous, and sluggish. Many symptoms in these cases are caused

by phlegm. Since phlegm is a symptom itself and not the

original `cause' there is no question of which of the phlegm symptoms

are the cause. I have seen dozens of people with temperatures below

97.5 who are in serious levels of malfunction with countless ever-

changing symptoms. Those with temps below 96.5 are in serious

distress. We must remember that when the temps are low we have

SLUGGISH metabolism – the lower the temps the more sluggish our

metabolism is. This sluggish metabolism (whatever the degree of

intensity) makes the maintenance of ordinary life more and more

difficult. Until we have the case of certain CFS patients who live

their lives isolated in their homes or even in their beds – they

simply can not deal with the ordinary challenges of life.

 

****Victoria wrote = When I was very sick, I was getting readings in

the 96 F range. I

also came to dread pains in my left side because that too signaled

that I was getting sicker. My making that comment to my doctor was

what caused her to order a monospot test. It came back " exposure

within the past 6 months. " It continued to show that result for the

next two years. The Epstein Barr titer test revealed the pattern for

chronic mononucleosis. (The mono test that reveals " exposure within

the past 6 months " is more instructive than the ones that give a

straight " positive " or " negative " .)*****

 

People with these disorders inevitably have many infectious

processes – these infections of course have their own symptoms – but

they are not the cause of the disease they are also symptoms of the

sluggish metabolism. Without going deeply into the issue – when

metabolism slows – everything slows – including immune functions –

combine this with phlegm and this opens the body to potential

invasions of many types. When the defensive mechanisms break down we

are vulnerable. Many symptoms come from these infections and

inflammations. Look at the many symptoms commonly seen in these

cases – Epstein Barr, disbiosis, leaky gut, Candida infections (local

and generalized), eye-ear-nose infections, leucorrhoea, easy to

contract epidemic diseases such as influenza, etc. etc. Another

category of patients have inflammations, hyperplasias, and cellular

stresses throughout the body.

 

Many people will say oh I do not have that disease – I do not have

Epstein Barr – or another will say – I do not have that disease

because I do not have Candida infections. The form of the infections

is not the important part – the important thing is having chronic

infections. And chronic phlegm! None of these are the cause of the

basic disease they are symptoms of the general metabolic malfunctions

which have left us vulnerable to pathological invasions of various

types.

 

***Victoria wrote = Back when this was happening, I didn't know

anything about TCM. What

helped was a lot of rest and some very high dosages of vitamins and

minerals. Digestive enzymes also helped a lot. I also meditated and

used visualization. Echinacea helped. It took a couple of years, but

I did improve to the point where I felt considerably better. After

this point was reached, the monospot tests started coming back

negative.****

 

If one searches in the Internet under any of these disease categories

one will find hundreds (maybe thousands) of palliative measures for

dealing with symptoms. Perhaps nutrients might help – or hormones –

or enzymes – meditation – medicinal herbs – accupuncture -

antibiotics - antidepressants – massage – body therapy – falling in

love – better diet – exercise – it is endless!!! None of these

techniques will cure this disease. These techniques are palliative –

not curative. This does not mean we should not treat the hundreds of

symptoms that might arise but we should not expect to cure this

disease by palliative measures. Since each and every symptom causes

its own set of stresses these symptoms should be treated.

 

***Victoria wrote = I improved as much as I could with the

supplements. I took another

big step up when I saw a TCM herbalist. I was hoping for just some

slight improvement. I got a whole lot more, and it started showing

up in 3 weeks. I'm not cured, but the more I learn and the longer I

stay on TCM treatment, the more I improve. Every time I slack off

treatment, I start to have problems. And treatment needs change over

time.*****

 

One of the great achievements of TCM is that it treats symptom

patterns and the whole person and not diseases. This means that even

a moderately talented practitioner might be able to treat some of the

basic disease patterns that underlay the acute symptoms. In other

words when the doctor treats the patient as a whole – as much more

than just the acute symptoms – they might be able to at least deal

with some of the basic issues. Unfortunately few practitioners are

able to fully resolve this issue as they do not understand the true

nature of cold/dampness disease with heat symptoms. This is what is

meant by cold damage with heat symptoms. The patient is suffering

from severe cold and deficiencies yet also full of heat symptoms from

the infections and inflammations. If a practitioner only treats the

acute symptoms of course there will be no lasting benefit. One might

resolve one issue only to have another (or several other) problem pop

up somewhere else.

 

***Victoria wrote = I came down with CFIDS in the early 1970s 6

months after gall

bladder surgery. (It's now known that histamine-releasing

anesthesias can trigger CFIDS in susceptible individuals. The CFIDS

Association of America has a list of which anesthesias are safer and

which are apt to trigger problems in people at risk for developing

CFIDS or who already have it.) Back then it didn't have a name. That

was still 10 years in the future. I lucked up in that I had an old

country doctor who even though he didn't know what I had used his

training and his powers of analysis to figure out things that would

help. Some of what he tried me on and which helped (like the B12

injections) are recognized today as helping many people with CFIDS.**

 

Although Victoria emphasizes histamines and anesthetics and no doubt

these things might be important - but -the things that caught my

attention was the underlying gallbladder problem and the stress of

surgery. It is true that many stressors even minor ones might trigger

full fledged CFS but the fact remains that these stressors only break

one down if our stress reactions are already weakened. Major

stressors like surgery and acute disease often trigger major stress

states that end up as exhaustion – CFS is a type of exhaustion. This

is why for CFS patients recovery becomes more and more difficult –

their reserves have been depleted. Ordinary stressors that millions

deal with daily become debilitating for those with inadequate

metabolism for dealing with them. Since in TCM the imbalance between

the earth and wood functions is considered to be a primary pattern in

this disease – gallbladder/liver disease will probably be important

in the development of this disorder for many people.

 

***Victoria wrote = I am one of a subset of PWCs (People With CFIDS)

who does have a

history of recurring bouts of mononucleosis. (I suspect that there

may be more but doctors haven't thought to check for it. Part of

the reason is because at least as late as the late 1980s it was

widely believed that children didn't get mono, once you had it you

never got it again, and people over a certain age didn't get it.

The reason I got diagnosed as often as I did probably was because

for a large part of my life I have either been in school or using

military medicine. The two environments where doctors see a lot of

cases of mono and where monospot tests are ordered more routinely

than in other settings.***

 

Mononucleosis is not the cause of this syndrome it is a cofactor.

These infectious diseases only occur in those who are already

predisposed to them by weakened metabolism and the weakened immunity

that goes with it. It is similar to the many infections that an HIV

patient might get. Those infectious processes are everywhere at all

times but only an immune compromised person contracts them. In the

case of hypometabolism they are susceptible to certain subsets of

disease – these similarities can be seen by the recurring patterns

that appear in hypometabolic patients. Only certain people develop

mono – and once they develop it then the mono becomes an even further

stress. Stress breeds stress which breeds more stress.

 

****Victoria wrote = I have a history of on-again, off-again thyroid

problems.

Hypothyroidism in every case except one time when I was

hyperthyroid. Here's another interesting correlation. Every time

that I have had mono or a mono-like illiness in my life, I have also

had thyroid problems. I'm not talking about just the symptoms of

hypothyroidism but verifiable lab tests that thyroid function was

low. Thyroid supplementation helped many of the symptoms, but still

left a lot to be desired. TCM helped what thyroid supplementation

couldn't.*****

 

Actually this disease probably has multiple hormonal involvements.

Thyroid is often blamed because it is thyroid gland which is

responsible for releasing the hormones that regulate metabolism and

heat production. But as an Endocrinologist I find many hormonal

issues here. Example there is almost always a cortisol involvement.

This is easy to understand as cortisol is the stress hormone and

these patients have constant unrelenting stress reactions from both

endogenous and exogenous causes. In advanced cases the hormonal

imbalances become very complicated. There has been much study on the

pituitary imbalances of this disease – this inevitably becomes more

important as the patient ages. Most people with this level of

hypometabolism do not age well.

 

One important point about Victoria's comments above is that this is

easy to understand – many people with this disease have multiple

autoimmune disorders and allergies (many TCM thinkers refer to this

whole category of disease as being related to allergies). The most

common thyroid disorder seen in these cases is Hashimoto's

Thyroiditis – as I mentioned before every cell and organ is

susceptible to inflammations and infections. One has seen innumerable

autoimmune issues in these cold/heat cases. As I mentioned in another

post a common symptom is Wilson's Syndrome which is a type of

autoimmune issue at the T3 receptor sites – this is not a Thyroid

disease it is a natural cellular response to the problem of excess

Thyroid in the face of less need. This is exactly the same thing that

happens in Insulin resistance – the reason why the Insulin receptor

sites have shut down is because of the fact of more sugar being

present than the cells need therefore the receptor sites shut down to

protect the cells from both the excess sugar and the excess Insulin

which has been released to deal with this excess sugar.

 

It is reasonable to assume that when we are in the acute phase of

our infectious diseases that all of our infectious and inflammatory

processes will be stimulated at the same time. These acute cycles

relate to stress – when under stress the body becomes less able to

deal with the problems so they might get worse (all at the same

time) – this is often when the doctor sees the case during these

acute phases. Many western doctors give antibiotics and

antiinflamatories at this stage of the disease – this only makes

things worse in the long run. In advanced cases these inflammations

and infections might be more or less constant – one never recovers

from them – this obviously will eventually exhaust stress and immune

functions. Often when these patients come to the physician they have

so many symptoms they feel frustrated because the physician does not

even listen to all of them – the physician does not have time to hear

all of the many symptoms – but most doctors are only going to try to

deal with the obvious treatable symptoms. Because a large percentage

of patients do not show clear problems through standard testing –

many physicians see this as a mental disorder and prescribe anti-

anxiety and or anti-depressant medications.

 

***Victoria wrote = Over the years I repeatedly have noticed another

pattern. Often

after I start to improve (and am more active), I reach a crisis

point. I start to have more problems with allergies and allergy-

like reactions, and I start a downward spiral again. What has

stopped this every time has been the combination of thyroid

supplementation and prednisone. After so many times I discovered

that lower than normal dosages of both for a very short period of

time is enough to reverse the downward spiral. A few years ago I

read about some doctors starting to consider this combination in

treating some CFIDS patients, so evidently I'm not the only person

to have noticed this over the years.***

 

It is very common for one to have periods when the symptoms seem to

be improving - but it seems we come up against a wall and start

declining again. This has two main causes one is - recovery begins

but can not be maintained because of inadequate reserves - so when

the reserves are used up we begin falling backward. This is yin

deffeciency - if we had adequate yin reserves then the Qi and yang

could be developed but since we do not when the yin reserves are

delpeted again we relapse. One type of example is if one started a qi

or yang building program it might work beautifully for awhile but

once the yin reserves have reached their limit then the yang

substances become stressful and we fall backwards. Another little

understood issue is that for some their disease has become their

identity - they do not ever really try to recover - I have seen many

people start the process of recovery then drop it and go on to

something else - they want recovery but they do not want to

change.Many people find it advantageous to be the victim and many of

the parameters of their lives are formed around their disease -

including relationships. These patients have strong counter pressures

against recovery. Accupuncture can help with this and also

psychotherapy.

 

I think every one of these cases should have a full hormonal workup –

of course this is the prejudice of an Endocrinologist. As I mentioned

there are inevitably multiple hormonal issues involved. In the

beginning it might be necessary to supplement hormonal functioning so

as to relieve the overwhelming stress. In each case there will be

different needs. Remember that hormones have a yin/yang nature – the

various hormones perform either anabolic or catabolic functions.

Because this disorder has both hot and cold symptoms – it might be

necessary to increases both anabolic and catabolic functions.

Frequently one needs Thyroid support and or Cortisol support. A very

common issue in both men and women is low Testosterone – because in

hypometabolism the muscles need less Testosterone and less IGF-1 – so

the production of these hormones is decreased. Often DHEA and

Pregnenolone supplementation is helpful. May I suggest that instead

of using Prednisone that one should use Progesterone creams. I am

100% against using any synthetic hormones whatsoever for any purposes

whatsoever. Actually the effects of the combination of Thyroid and

Prednisone that Victoria mentions here is best achieved with a herbal

combination that includes Ginseng, Astragulus, and Angelica. Many

women with this disorder will need extra support during menses and

menopause. Just as men with declining steroid hormone production will

need support during stress to avoid being overwhelmed. But hormones

do not solve this problem they act as support and hopefully temporary

support as one should avoid life time dependence on hormonal support

if it can be avoided. I think lifetime hormonal support is only

necessary in very severe long term cases – and genetic problems – and

inability to comply with other therapies.

 

One point to think about that I see here in Victoria's post is if one

is under stress or if one senses the beginning of the symptoms coming

on then as full a support to the body as possible should be

instituted so as to avoid the cascading symptom picture that will

knock the patient down. Many of the secondary symptoms can be aborted

if caught soon enough - A full fledged stress reaction may be

difficult for the patient to cope with. Herbs and acupuncture are

very helpful there.

 

****From a TCM standpoint I have a lot of problems with cold and with

wind. Though I'm greatly improved from what I was, I still am

vulnerable to cold and wind in the environment. I do worse in winter

than in summer. As temperatures rise, so does my energy. (At least

until it gets too hot in the summer.) As temperatures rise,

muscles also get more flexible. (For readers new to TCM, the concept

of Wind includes not only the wind but changes in barometric

pressure and changes in ion concentrations.)*****

 

Everyone with this disease has cold/wind/dampness/phlegm/heat issues.

Hypometabolism is a cold condition. By definition it has to do with

yin and yang deficiency. This appears as many patterns such as kidney

yin deficiency – yang vacuity – spleen vacuity – inhibited Qi

mechanism – upward counterflow – evil heat (including damp

heat/depressive heat/vacuity heat).

Naturally in cold disorder the symptoms will be worse in cold

climate – also such patients should avoid all cold substances like

cold food and drinks. Icy foods will freeze digestive function – one

of the worse things we can do at any time but especially if we have

low temperature.

 

Such people do not deal well with change therefore the symptoms are

often worse in cold climate or hot climate. Of course hypometabolic

people are already cold so they should avoid getting colder. SAD is

related to this syndrome as an example. Some people are addicted to

warm therapies some of which might not be helpful – such as hot or

steam baths – this can make more weakness as it even further weakens

the surface ability to regulate temperature – and most importantly it

wastes Jing fluids which is very harmful to these patients. Hot is

not helpful – warm is the key word – increase the internal and

external heat in the winter. Astragulus is useful in these cases

because it warms the body as well as strengthening the upright Qi.

Sometimes large doses will be necessary – much more than is available

in herbal combination patent medicines. During changing seasons the

symptoms flare. While traveling the symptoms will often flare.

 

For those who understand the issues in this disease it is often 100%

curable – at the least important parameters can be improved. If one

is young and strong the prognosis is very good in those patients who

are able to be compliant to the protocols.

 

Many of the leaders in the health movement are recovered CFS and FM

patients. There are many approaches to treatment but I find that a

very important issue is the fact that many of these patients have

confused ideas about what is happening to them – therefore they can

not commit to any particular therapy. My experience is that there are

many problems involved – many patients have tried many protocols

(mostly palliative) and the symptoms either were not benefited or

they returned later. Since many patients have defined their disease

in different ways at different times they do not believe it is

diagnosable or curable. For many of these patients their disease

becomes something they have to learn to deal with – and in fact many

people have become very skilled at `dealing' with this disease. Yet

this is only psychological adjustment to the mounting symptoms.

 

For professionals - think about these concepts from Master Li –

For yin fire diseases that include symptoms of damp or yin with

pathological symptoms with heat then the therapeutic principles

should be -

 

Fortify the spleen

Boost the Qi

Harmonize the liver/spleen (this is essential)

Harmonize the stomach and the intestines

Clear heat (wherever it arises)

According to need – quicken the blood/transform the phlegm/eliminate

dampness/moisten dry.

 

Master Li described yin fire first in his classic work `Treatise on

the Spleen and Stomach'.

Other concepts that I think help to explain this disease are –

Left/right disharmony

Disharmony between above and below

From one perspective this is an Autonomic Nervous System disease the

overstimulation and overreactivity of the SNS and the inability of

the PSN to calm and recover us can be a basic symbol of this

disorder. Constant SNS over reactivity is a symptom and a cause of

adrenal exhaustion

Disharmony between wood and earth functions

Excessive lifestyle choices

Generalized stress disorder

Exhaustion of stabilizing functions

Brain chemistry exhaustion (perhaps all major brain chemicals will be

diminished – I find GABA to be very important here as it is the

chemical responsible for keeping the other chemicals in balance – by

definition there will be Dopamine problems – but this might be

difficult to approach as in the case of yin deficiency one often can

not give yang substances {my answer to this is to give Six Flavors

Rehmannia Pills to support the yin so that the body can accept more

yang – asparagus root and other yin substances might also help}.

This disease has deficiencies in all three treasures – Yin and yang

Jing – Qi – Shen.

Treating the Shen is very helpful to calm the many types of anxiety –

Dragon Bone is helpful - one of the most useful medicines for theses

problems and the many compulsions these patients suffer under is

Polygala – one has seen many very severe and long lasting compulsive

behavior patterns broken by this herb – one good formula is the one

sold by Ron Teeguarden called `Will Power'.

Sleep is essential for all under stress – so all sleep disorders

should be trteated.

The absolutely best medicine for this disorder is Minor Buplereum

Decoction as it harmonizes the spleen/liver – but of course it alone

will not cure this disease but it is immensely helpful. Central Qi

Pills are also helpful for many cases it does the same..

If the case has too many severe contradictory symptoms one approach

is the Superior tonic herb approach meaning give tonic herbs to

start - with very carefully selected medicinals to resolve the acute

symptoms. Because many of these patients are `universal reactors' and

can not accept anything new – we must go slowly. Tonic herbs that

include all three treasures can slowly build enough yang and qi

energy to allow the patient to start taking more powerful medicines.

Give jing herbs that contain both yin and yang. If tonic herbs are

disturbing then emphasize the yin building herbs with less amounts of

yang. As stability is achieved slowly add yang while keeping full yin

support at every step of the process. Remember Six Flavors Tea when

the body can not accept yang substances. In the most severe cases

work very slowly and cautiously on the shen, yin and blood. Later

more aggressive Qi building substances can be used.

Read Bob Flaws on the relationship of CFS to malaria – both are

cyclical diseases that have alternating cold and heat symptoms. Very

interesting concept.