Thursday, May 12, 2005

West Nile Help

Initiated by the Fort Collins West Nile Support Group

For the majority who contract West Nile Virus (incubation 2-14 days from bite to onset of symptoms), only mild flu-like symptoms will occur. This website is for the rest of you who contract West Nile Virus, are very ill and may not have gotten well even yet (after a year or two) or are experiencing relapse. Because it affects the immune system severely, you can expect other symptoms to emerge as other organs or areas of weakness have been affected by the disease. Secondary complaints are very common—problems you have never had before or have been in remission may flare up. The psychological/emotional effect on you can be quite serious, including those around you. The lack of ability to communicate clearly, to think and focus with clarity, the memory loss and the resultant fear, depression, feelings of hopelessness and frustration especially when people don’t understand or take your complaints seriously can be as devastating as the disease itself. Loss of employment and financial depletion, emotional exhaustion often occur when the disease persists.

CAUTION: The symptoms of enteroviruses (which are communicable via fecal-oral transmission, and sometimes respiratory secretions and more prevalent in children) are virtually identical to West Nile Virus and therefore, only testing after 7-10 days (and sometimes even longer) of the onset of symptoms will identify whether you have West Nile or not.

SYMPTOMS

Any or all of the following may be experienced, although the most common are listed first:

Malaise: general feeling of illness
Headaches: usually severe with little or no relief from over-the-counter medication; originates from base of neck; difficult to even think, the pain is often very intense
Memory loss; lack of ability to focus, poor mental agility; “fuzzy thinking”; confusion;
Neck stiffness: usually accompanies headaches
Rash: may or may not have; may recur; usually on arms and legs
Difficulty speaking, swallowing: in varying degrees; feel at time you cannot breathe properly
Muscle pain and weakness: weakness and pain in walking; often very poor balance and must hold onto support
Fatigue: exhausted no matter what you do; difficult to function normally for any length of time
Light sensitivity: prolonged and severe; may need new optical prescription and must protect eyes outdoors indefinitely
Noise sensitivity: can’t tolerate loud or even normal sounds; need quiet
Fever: may be very high and prolonged or intermittent and sporadic
Chills: may alternate hot and cold
Vomiting: if prolonged, dehydration becomes an issue for which you may need hospitalization for fluids, especially if accompanied by diarrhea
Diarrhea: often accompanies vomiting and exacerbates the dehydration problem
Loss of appetite: eating is unappealing, especially if you are continually nauseous
Meningitis: some degree involved if you have the headache/neck stiffness, light sensitivity
Encephalitis: altered (impaired) mental status would indicate involvement at some level
Paralysis: in varying degrees may occur and need physical therapy

West Nile Meningitis Symptoms

· similar to other viral meningitides
· fever, severe headaches, neck stiffness, light sensitivity (eyes)
· white blood cells in the cerebrous spinal fluid
· improvement usually, but headaches and fatigue continue

West Nile Encephalitis Symptoms

Altered mental status
· Confusion, coma, death
· Underlying medical conditions may cause greater severity or West Nile may attack those with pre-existing medical problems
· May or may not cause concentration problems; inability to focus
· Tremors (quick, uncontrolled muscle jerking in arms, legs)
· Balance problem ; dizziness

West Nile Flaccid Paralysis Symptoms
· Found in greater frequency with each successive season
· Do not necessarily have to have headache with this

West Nile Poliomelitis Symptoms

· Not actually the disease poliomelitis, but similar symptoms
· Weakness, generally and especially in the muscles
· Syndrome localized in the spinal cells in the spine that help to relay movement messages from brain to
muscles
· May be asymmetric (1 arm, 1 leg, 1 side)
· Severe muscular weakness of respiratory system; respiratory failure possible
· Problems speaking, swallowing, breathing

Medical treatments do not seem to work; those that might be helpful would have to be started before you contracted the disease; although a vaccine is possible, the incidence of severe West Nile Virus is not great enough to warrant its production/distribution


HELP SUGGESTIONS

Many remedies have been attempted.. The following have helped some or all the victims who tried them., listed in order of greatest to less effective.
Educate yourself and family/friends on the disease so they can be supportive; the emotional and psychological effects can be very serious

· As much rest as possible and plenty of water
· Protect eyes outdoors in bright light, especially
· Stress aggravates the symptoms
· Nutritional supplements containing glyconutritionals which create cell-to-cell communication in the body and natural phytochemicals which support cellular repair and defense (these particular supplements are based on 4 Nobel prizes in cellular communication)
· Soy lecithin or other “brain food” supplements for mental dysfunction
· Cognitive brain therapy/physical therapy
· Mild electrical stimulation to activate the lymphatic system
· Electrical stimulation (for paralysis/ poor muscle coordination); esp. use of the the synaptic machine originally developed for fibromyalgia
· Massage therapy (but NOT around spine)
· Hydrotherapy (hot water soaking for leg pain/muscle flaccidity)
· Chiropractic manipulation (sometimes exacerbates the problem; use carefully)
· Vibrator (muscles in arms, legs and back)
· Brevail: high lignan (flaxseed) supplement helped with skin quality, splitting fingernails, hair loss and restorative sleep
· Accupuncture
· Yoga (relaxing and breathing techniques helps with pain and stress which increases pain)


We know of no medications that helped the disease.. Many made it worse or created secondary problems; Strong narcotics for pain often caused addictions which had to then be treated also. Relapses are common even many months or a year after initial onset of disease.


For more information: email: hollysternfc@yahoo.com
Other helpful websites:
www.fightthebitecolorado.com
www.healthinfosource.com

WEST NILE VICTIMS TESTIMONIALS

HS (female, 54, good health) contracted from one bite all season in middle of city; severe dehydration from vomiting/diarrhea and continued high fever put me in hospital for a week; discovered serious anemia problem cause by unrelated fibroid issue. My vision was blurry so I could not drive until I got new glasses. Light sensitivity continued. Terrible headaches with no relief continued as well as difficulty walking and chronic leg pains, stiff and sore neck, difficulty swallowing and even catching my breath if I sneezed or coughed. Such a mental fog I could not remember even why I went into the next room; my vocabulary/word retrieval skills plummeted, no mental dexterity at all. Fear of the future with my continued lack of normal function and how I could ever have a normal life again caused depression. Insecurity in dealing with people outside our home was very pronounced; verbal communication was only on a very basic level and I still had to stop and try to remember the right word or talk around it because it couldn’t function normally. A friend and my husband encouraged me to try glyconutritional supplements which dramatically helped. Light sensitivity and less mental agility/memory were the last symptoms that lingered.

LW (female, 39, good health, athlete) hospitalized for dehydration and pain; positive spinal tap for meningitis. Severe headaches, vomiting, dizziness, stiff, swollen neck and back; extreme fatigue; intermittent fevers; tremors/shaking; eventual seizures. Tried everything from mild chiropractic
treatment to herbal remedies, to electrical stimulation to massage therapy to brief, sporadic nutritional supplements, to muscle relaxing methods. Still have at least some symptoms of everything but the fevers 2 years later. Lost job, although they held it for over a year, insurance running out, on Social Security but unable to drive because of seizures. Sister moved in to take care of her a year ago.

BA (female, 46, good health) hospitalize 4 days. rash on legs (non- itching); photosensitivity for many weeks (vision change); nausea/vomiting; couldn’t eat normally for a long time; shaking and internal tremors; extreme fatigue; debilitating headaches. Relapses with more headaches, sinus drainage, fatigue
continued; allergies sprang up. Many tests and no significant help from chiropractic treatment. After 1 ½ years, started glyconutritional supplements regularly and now have only food allergy side effects from sinus treatments last year. All other symptoms gone.

SR (female, 60, mild exertive asthma, mitral valve prolapse in heart, good health) hospitalized 1 week at onset; not expected to live; meningitis/encephalitis; poor respiratory function; excruciating pain in head and body; chills and hot flashes but no fever; loss of appetite; extreme sensitivity to noise and light; tremors on right side; intolerable pain led me to narcotics and eventually to a Michigan Pain Center for a month to withdraw from the narcotics; headaches continued, taking many medications and now have regurgitation in a heart valve and muscle damage surrounding my lungs has reduced them to the capacity of someone with emphysema. 6 months of cognitive and physical therapy Asthma much more pronounced. Vision weak in left eye and have “floaters”. Need much rest and still on medications for secondary problems caused by West Nile. Naturopathic help with mild stimulation to restore lymphatic system flow and some general supplements gave some relief. Still taking pain medication for headaches, tremors continue in right arm and general fatigue/weakness and memory loss, focus/confusion issues. Tremors in right arm. Considering starting glyconutritional supplements. Husband made video of testimony.

LH (female, 47, good health and active except for heat intolerance) 2 negative titer test; chills; nausea and vomiting; diarrhea; muscle pain and weakness; noise and light sensitivity; general aching and poor balance; memory loss; confusion and inability to focus or problem solve; precipitated early “crisis” menopause; slight recovery then relapse a few months later. Sometimes cannot breathe deeply enough to get the oxygen I need. After two years of slowly getting somewhat better, I has started physical therapy, cognitive therapy, psychotherapy because I still cannot stand more than 10 minutes at a time or sit for more than 1 hour; muscle weakness and pain continues sporadically in arms and legs; memory loss still apparent; light sensitivity still exists although noise sensitivity has passed; neck stiffness continues; being treated now for chronic fatigue syndrome; still have compromised immune system; may try Provigil to restore energy via the hypothalmus.

Dear Holly,
I was referred to your website and blog. As the principal investigator here I would like to request that you send on this email or post something on your website about our study. This is a golden opportunity for those who have had West Nile disease to actually help do something about it by participating in a research study.
We have recent IRB approval here at the University of Utah to study the human genetics of WNV infections (IRB_00013755). Specifically, we plan to compare subtle differences in some preselected immune response genes among persons with mild or asmptomatic WNV disease vs. those with severe, neuroinvasive WNV. That is, we think some human genetic variations may lead to severe, neuroinvasive WNV disease, including deaths. The study is in collaboration with Dr. Mike Bamshad, formerly here, now at U. Washington. It is funded by the Rocky Mountain RCE headed by Dr. Barry Beatty at Colo. State Univ. The subjects are being recruited at our site; genetic analysis will be done at Washington.
There are some requirements that potential study subjects must meet:
1) They MUST have had confirmed West Nile disease. That means a positive blood test or WNV PCR from spinal fluid or blood. "Possible" or "probable" cases are not eligible.
2) They must be able to provide informed consent.
3) Must be willing to provide a blood sample. Subjects can get this done locally wherever they live. We handle everything by mail, free of charge.
4) Able to provide or refer us to a source of medical records confirming the disease and its course.
There are a few other eligibility requirements that are easily explained over the phone. The best way for potential subjects to enter the study is to contact our study coordinator, Ann Rutherford RN, at ann.rutherford@genetics.utah.edu or phone 801-585-9495. Thanks for your consideration of this request.--
John D. Kriesel, M.D.University of Utah School of MedicineDivision of Infectious Diseases30 North 1900 EastRoom 4B-322Salt Lake City, Utah 84132phone 801-585-7314fax 801-585-3377