HOUSE COMMITTEE ON Veterans AFFAIRS

 

PRESENTATION BY CHARLES W. KELLEY

December 6th 2005

 

ATTACHMENT 1

 

The many symptoms of peripheral neuropathy

 

 

Neurasthenic syndrome - Some medical historians consider neurasthenia to be the diagnostic predecessor of Chronic Fatigue Syndrome.  Chronic Fatigue Syndrome (CFS) – Is just what the name implies.  A few good days of rest and you still do not recover.  No energy, listless, weakness, waking up and felling fatigued, or shortly after doing any work extreme fatigue.  May show up in the afternoon with almost feeling like you have flu symptoms with a low-grade fever type of fatigue.  At first, some scientists thought this was caused by a nervous disorder therefore the former name neurasthenic syndrome.  Then it was found that the Epstein-Barr virus (EBV) was associated.  High levels of EBV antibodies (disease-fighting proteins) were found in those patients suffering from CFS. 

 

Later diagnosis of CFS of some patients without this high level of disease-fighting proteins indicated there were other causes.  Other causes may be iron-poor blood (anemia), low blood sugar (hypoglycemia), environmental allergy, a body wide yeast infection (candidiasis).  I have seen some theories that those individuals with neuropathy and that type of condition, that CFS is caused by the damaged nerve endings.

 

Today, CFS also is known as myalgic encephalomyelitis, post viral fatigue syndrome, and chronic fatigue and immune dysfunction syndrome.  Chronic fatigue and immune dysfunction syndrome pointing out this CFS, once again could be attributed to an autoimmune systemic issue caused by toxin damages the Veterans were and are experiencing.

 

Since the Epstein-Barr virus (EBV) is also associated with many of the cancers on our hit parade already as well as autoimmune disorders.  Is it now a possibility these environmental toxin damages in Veterans is creating or mimicking the same system damages as the Epstein-Barr virus?  Similar to the Hepatitis C virus and its almost indistinguishable non-viral toxic chemical caused Autoimmune Hepatitis.

 

Other symptoms may be headache, drowsiness, depression, muscular aches and pain, nervous irritability, sensation of drunkenness, rapid fatigue, depression syndrome, nervous irritability, vertigo, etc.

 

As a note: the Ranch Hand study showed Agent Orange Ranch Handers suffering from daily debilitating chronic fatigue and weakness along with neurological problems.  Words were added then to make this so-called Agent Orange a study a "non-study of Agent Orange" because of some "manipulated mythical exposure index." 

 

Epstein-Barr virus (EBV) – What is curious about this whole set of facts here regarding CFS and the Epstein-Barr virus is this protein issue.  Is this also a problem of toxic chemical exposure?  It is now believed the Epstein-Barr virus to be the cause of nasopharyngeal cancer, T-cell lymphoma, natural killer (NK) cell lymphoma, Hodgkin's disease, and gastric carcinoma.  Could this be why these medical conditions and cancers were listed as Agent Orange associated by the VA analysis in 1989, then classified, and never released? 

 

Neuropathy – A form of nerve damage by either damages to the nerve sheath itself which aides in nerve conduction or damage to the nerve fibers themselves.  This can affect either the motor nerves or the sensory nerves.  Normally the longest nerves (feet and legs) are affected first.  Can start out as a tingling or burning sensation then develop to tremors or foot drop or can become “painful neuropathy.”  Neuropathy can be a result of nerve damage from antibodies that no longer recognize “self” as “self” and attack the wrong tissues in the body.  Neuropathy can also be a result of vascular changes that now starve the nerves for blood supply.

 

Neuropathies are divided into three basic types

 

1.      Sensory – numbness, burning, tingling, aching, electric shock, extreme sensitivity to touch.

 

2.      Motor – weakness in the feet, ankles, hands, wrists.

 

3.      Autonomic – those nerves are now affected that deal with the autonomic nervous system – can cause diarrhea as those nerves that control digestion are now damaged, bradycardia (low heart rate less than 60 beats a minute), or even those nerves that control breathing.  Can lead to death.

 

Causes are many - such as toxic chemicals, vitamin B12 deficiency, and liver disease.

 

Central nervous system damages also can produce these effects, as you will read in Attachment 2.

 

Bradycardia.

 

Destruction of nerve fibers and nerve sheaths. 

 

Severe degeneration of ganglion cells in the central nervous system.

 

Aching of feet and legs with latency (intermittent or dormancy).

 

Paresthesia in the extremities - Paresthesia means an abnormal sensation of the skin, such as numbness, tingling, pricking, burning, or creeping on the skin that has no objective cause.

 

Pain in the legs. 

 

Numbness and aching of fingers and toes.

 

Swelling in hand joints and flaccid paraparesis – Flaccid = lacking in strength or firmness or resilience - Paraparesis = a slight paralysis or weakness of both legs.

 

Intolerance to cold – Cryoglobulinemia = this more, than likely, is caused by similar neuropathy causes.  Of what is known as gammopathies or blood disorders.  The same thing is true in most neuropathies there will be blood disorder issue with detected patterns. 

 

"The term cryoglobulinemia indicates the presence of cryoglobulins in the blood.  These are abnormal forms of protein molecules that precipitate at cold temperatures and redissolve at normal body temperature.  Hence, when a person with cryoglobulinemia is exposed to cold, he or she may experience impaired circulation in the small blood vessels.  This may lead to color changes in the skin, hives, damage to the extremities, bleeding into the skin (purpura), and other problems.  The underlying cause of this very rare condition may include diseases of the immune system [e.g. Waldstrom's macroglobulinemia], of certain cells in the bone marrow [e.g. monoclonal gammopathy of undetermined significance (MGUS) or its malignant form, multiple myeloma], and some infectious diseases [e.g. hepatitis C virus].  The diagnosis depends on demonstrating the presence of cryoglobulins in the blood and searching for a possible underlying cause."

 

Central nervous system – Consists of the brain and spinal chord.

 

Hyperacusia - is a condition in which there is an abnormal sensitivity to sounds, such that the person hears significantly better than most people.  More than likely associated with a brain or some type of nerve lesion, that causes not only hyperacusia but also taste alterations and increased salivations.  Maybe associated with some forms of facial palsy.  Also, possibly sensory nerve damage done as part of the neuropathy affect.

 

Increased salivation.

 

A sweet taste in the mouth.

 

Hypotension.

 

Again, I comment that little work has been done in the "autonomic nerve damage" arena and its effect on insulin cycles, delayed stomach emptying, breathing rates, diaphragm muscle and nerve damage, heart rate, etc.

 

One area of toxic chemical damage of autonomic nerve damage that has been greatly overlooked is in the area of the digestive system.  This also seems to parallel some Veterans with known peripheral neuropathy nerve damages. 

 

The increase in gastrophoresis and similar symptoms reported by Vietnam Veterans in this country as well as significant increases of Australian and New Zealand troops is in this area of digestive system issues.  From Irritable Bowel Syndrome (IBS) to Gastroesophageal Reflux Disease (GERD).  Of  course, GERD is associated with esophageal issues and esophageal cancers; also a problem in Vietnam Veterans.

 

One of the common issues that parallel neuropathy in some of our guys that I have found is a developed intolerance to milk products either while in Vietnam or shortly after returning home.  While this is somewhat common in the aging process these were young men who before they went over were consuming copious amounts of milk in the mess halls and within a few years had lost the enzyme to digest the double milk sugars in milk products.

 

The area that produces this milk enzyme is the small intestine cilia.  When damaged the ends of the cilia that produce these enzymes can no longer secrete the needed digestive aide then you have digestive system issues.

 

One issue being totally overlooked is the celiac sprue lymphocytes which can cause a number of issues that according to Dr. Joseph Murray MD PhD, University of Iowa can remain digestive system symptom less.  Yet, the internal damage is being done in not only milk enzymes but also the uptake of essential vitamins and minerals such as the B12, B6, and A vitamins, etc.  Alternatively symptoms may come and go. These lymphocytes block the cell receptors in the small intestines essential for cell maintenance and cell growth.  I do not think this is just a coniendcedce.  These lymphocytes, according to Dr. Murray are the same lymphocytes that are found in the lymphoma cancers "even already found associated by the government/VA." 

 

In fact, according to Dr. Murray the longer you have this disorder and lymphocytes the more likely you are to develop one of the lymphoma cancers.  It only takes one cell to become malignant for what ever the cause or reason.

 

Dr. Murray also makes reference to the fact that these lymphocytes can cause "autoimmune neuropathy" in which the body's immune system attacks other tissues to include the optic nerve thus creating "optic neuropathy."  If it can attack the optic nerve then certainly other nerve matter can also be attacked creating a neuropathy condition as suggested in the term "autoimmune neuropathy."

 

Is all this just an accumulation of coincidences in our toxic chemical legacy?  I for one do not think so; since no study seems to be putting any of these single point data points to a real root cause or at least a secondary root cause.

 

We know from many studies that dioxin effects B12, B6, A, and K vitamin uptake.  Are these generated lymphocytes the secondary root cause?

 

Note:  Dr. Murray at the University of Iowa is considered one of the Nations experts in this disorder and the diagnosis of this disorder.

 

 

From my work and study, here is a generic summary of what our Vietnam Veterans are experiencing in this toxic chemical caused nerve damage issue.

 

Constant tingling or burning in hands and feet.

 

Numbness in the hands and feet to feel and/or hot and cold.

 

Sensitivity to touch.  Cannot even stand socks on feet.

 

Feet will be hot to the touch even with cooler ambient temperatures.

 

Feet will be cold to touch even with warmer ambient temperatures.

 

Tracking of damage is apparent with loss of leg and hand hair.  As the disease progress the leg hair loss goes higher and higher into the buttocks area.  Skin will appear shiny.  Last to go, will be the front part of the thighs.

 

Most are diagnosed with chronic sensory axonal polyneuropathy.  While some have a combination of painful sensory nerve damage and/or motor damage.

 

Progression of the disease manifests as stumbling, falling down, and loss of balance.

 

Progression also leads to weakness and pain in the joints almost like an arthritic condition but shows no RA in the blood work and there is no disfigurement.  Although, some do show an elevated increase in ANA titers.  A common symptom is upon starting to move after rest the joints in the ankles and knees will crack and pop.  Climbing up and down stairs becomes impossible.  Repetitive motions of the legs and joints become impossible.

 

As a rule, chronic daily fatigue is also involved in varying degrees from feeling constantly tired to running a low-grade fever during the afternoon hours with severe debilitating fatigue.

 

Pain levels very from constant discomfort to taking morphine or similar painkillers.  I have even heard of one case where the nerves in the spinal chord where actually cut to eliminate the constant and severe pain.

 

As the disease progresses more and more muscle weakness, atrophy, and some muscle, tendon wasting will occur in primarily extremities.  The use of a cane, walker, or even a wheel chair becomes necessary.

 

A common side medical issue also seems to be constant infections in sinuses, throat, ear, etc.

 

Ironically, even DOW the main developer of 2,4-D Agent White and 2,4,5-T Agent Orange indicate exposures will create nerve sheath and nerve damage by destroying the myelin matter.  The bodies defense system turns on this myelin protein and thinks it is a foreign body.

 

Yet, very few Veterans I have talked to indicate that the VA hospitals and doctors are running an Immunoglobulin test for Immune System Homeostasis or even the increased antibodies against the EBV.

 

The Ranch Hand study found an increase in the IgA antibodies as well as the Korean studies found an increase in IgE with a decrease in IgG1 antibodies demonstrating a change in homeostasis of the immune system itself.  This included a dysregulation in B and T cell activity including Interleukin’s 04 and 10, Interferon, as well as a slight disturbance in the tumor necrosis factor.  Whether these disturbances are linear in effect, step linear in effect, or logarithmic I do not think anyone knows. 

 

It is almost as if the VA doctors are avoiding this fact of a disturbed immune system creating many forms and varieties of peripheral neuropathy as well as other forms of autoimmune disorders.  From IgA neuropathy which can mimic Chronic Inflammatory Demyelinating Neuropathy CIDP to IgG or IgM neuropathy or neuropathy of ischemic antibody destruction.

 

This check for antibodies can also tell by the pattern either monoclonal or polyclonal if a possible developing cancer or autoimmune disorder is associated to the peripheral neuropathy.  In addition, the down regulation of one and the up regulation of another is a sign of developing problems aside from the peripheral neuropathy especially with regards to IgM and IgG.

 

While yes diabetes can certainly be a causation of peripheral neuropathy, if a Veteran has significant rapidly developing degenerating neuropathy issues and only slightly elevated

diabetes levels then the medical facts are that this is not caused by diabetes and more than likely just a coincidence of two separate stand-alone disorders. 

 

Bearing in mind:

 

That our own government studies found a dioxin TCDD linear dose response to polyneuropathy and so stated so in at least two scientific transcripts, while the published reports did not publish these found facts!

 

Two Korean Agent Orange Impact Studies verified peripheral nerve disorders to dioxin exposure also and categorically stated it was the most prolific disorder found associated to dioxin in their studies.  In fact, in their study when they compared those with diabetes mellitus and peripheral neuropathy the p-value of difference found was 0.2157.  Among categories of Vietnam Veterans, the p-value of difference was 0.8573.  These are not even close to being scientifically and mathematical “significant numbers.”

 

Both Australian and New Zealand Vietnam Veterans demonstrated significant increases in peripheral neuropathies.

 

More recent events in the Seveso, Italy “dioxin only” disaster in 1976, indicate in the 15- year mortality study a noted finding of a “three-fold increase” in a strange form of peripheral neuropathy.

 

Charles Kelley

SP5Kelley2nd94th@aol.com