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

392 Comments:

Anonymous Anonymous said...

Has anyone recovered from paralysis in the lower linbs due to WNV? Is there any way to speed the nerve regeneration process? How helpful is physical therapy? Any information would be appreciated. lloopy@aol.com

9:59 AM  
Blogger <> said...

www.westnilesurvivor.com

1:02 AM  
Blogger <> said...

yes--for the most part, i have re-gained use of my legs--i do have residual neuropathy in my right ankle which hurts 24/7, just like a spring wound way to tight-and my hips pop like microwave popcorn, -but i have graduated from not walking to using a walking stick to walking. I suggest YOGA, simple beginners yoga for stretching and calming the neuro pain--start slowly, maybe even with one on one private stretches----other p.t. was helpful also, however the strength gained from traditional p.t., is often lost through battles of fatigue that result from over exertion, which means days or weeks in bed trying to recover--also traditional p.t., which i tried 3 programs of and completed 2--tries to push you to some kind of sports type recovery, whereas my recovery was more about a slower re-programming of the brain/legs---some of the p.t. techniques also were big setbacks for me---i tried massage therapy on the specific areas of pain--joints mainly--just let the expert do their job and tell them you want an extended program or weekly or biweekly massage "therapy", it will take that long to realize some results--but don't let them overwork the muscle, its more about the tendons and ligaments for me, areas that were wound up so tightly, that releasing the pressure near the central pain area was more helpful in regaining some sense of normalcy in my leg movements and gait-- and in my hand, which had basically clubbed up into a throbbing blob---for example--i had the massage focus on my forearm, bicep area, which seemed to release the tension in my thumb and wrist joints--which hurt like all get out for over 18 months...anyway. thats me. make certain you see a professional for a diagnosis. i just know what worked for me--also get on the natural supplement kick--even if you're not into it--you have to get some higher quality vitamin sources into your damaged body--i'm not saying no cheeseburgers-if you can handle them--but have some EAS products--Soy powder and whey powder--chocolate is awesome--with milk--that and lots of individual vitamin doses--and i down with the provigil thing also--that helps and its non narcotic--just do what works for you--but do something!! keep in touch lloopy@aol.com----mitch, www.westnilesurvivor.com

2:37 PM  
Blogger <> said...

let me add this—it varies greatly from person to person---I know of some who have and others slowed and others using walking aids or not walking at all—that’s the truth.

2:57 PM  
Blogger jack raney said...

I sit here looking at your blog, thinking about the symptoms. I gues that I must be very, very lucky. I had every one of them, meningitis, encephalitis, poliomelitis. Started out just feeling bad, then I couldn't stand up, walk, then talk. That's when all hell broke loose, fever of 105.8, then coma. But the bright side is I'm still here, I can walk, talk. It has been 1 year and a month for me, a long, long year. I could go on telling you how bad I was, but it's better to tell you how well I'm getting. I still can't go to work, but I stay at home taking care of the house. I cook, clean, help take care of the kids. Not what I'm use to, but I am alive. Most of the people that I know with WNV, they take alot of medicne, I don't. Anyway there is light at the end of the tunnel, I have found that you are only as sick as you want to be. I choose not to be sick, just waiting for the doctors to see the same.
Good luck,
Jack R

11:36 AM  
Anonymous AJ said...

Hello Survivors:
my concern is the heavy-head/dizzy feeling that persist, 2 yrs after the WNV. I was in hosp for 20 days, had most of the symptoms, rash, headache, high fever, weakness in limbs, pain, slurred speech, encephalitis. The extreme fatigue persists,as well as the dizzy feeling. I have been taking meclizine for over 2 yrs now, and wonder if this will EVER go away. Am considering not taking the meclizine any more, as it is really not helping that much.
any advice??

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Looking at asthma drug info online today while my son coughs I came across this post. Does anyone know a good asthma drug site to help?

Thanks

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Hi,

Thanks for your blog related to post viral fatigue. I have a post viral fatigue blog that you might want to have a look at. It's in the early stages, but I'm hoping it will be useful for other sufferers of PVS and related illlnesses.

Cheers,
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A simple hot compress applied to the face is very soothing to those throbbing aches and pains of a blocked sinus, while a few drops of eucalyptus oil on a handkerchief can provide welcome relief for similar conditions. While supplements of vitamin C, D and zinc will shorten the lifespan of a common cold, a hot lemon drink is also extremely good. And be sure to cuddle-up in bed when you have a cold, as it will make the body sweat out the germs.

Cool lemon juice and honey are a great soother for a sore throat and gives the body much-needed vitamin C at the same time The juice of one lemon in a glass of water is sufficient. Melt the honey in a little hot water for ease of mixing.

A smear of Vaseline or petroleum jelly will do wonders for those sore lips and nose that often accompany a cold.

A 'streaming cold' where the nose and eyes water profusely, can respond to drinking onion water. Simply dip a slice of onion into a glass of hot water for two seconds, then sip the cooled water throughout the day. Half an onion on the bedside table also alleviates cold symptoms because its odor is inhaled while you sleep.

People prone to catarrh may find that chewing the buds from a pine or larch throughout the day will clear up their condition in just a few days.

Do you suffer from sore eyes? If your eyes are sore from lengthy exposure to the sun, try beating the white of an egg and then spread it over a cloth and bandage the eyes with it. Leave the preparation on overnight. Soft cheese (quark) is also a good remedy for this condition.

For those unpleasant times when you suffer from diarrhea, two tablespoons of brown vinegar will usually fix the problem. Vinegar can be rather horrible to take, but who cares! The problem is more horrible. Vinegar can usually be found in most people's cupboards, so you don't need to worry about finding someone to run to the shop for you in an emergency.

Sleepless? Instead of reaching for sleeping pills, which can quickly become addictive, try this: Drink only caffeine free tea or coffee starting late in the afternoon.. Go to bed earlier rather than later, as being overtired tends to keep people awake. Make sure the bedroom is dark and quiet. Use only pure wool or cotton sheets and blankets. Polyester materials can cause sweat and make you thirsty (if your child constantly asks for water throughout the night, this could be the reason).

And don't watch those scary movies just before retiring! If you still can't sleep, make a tea of lemongrass or drink a nightcap of herbal tea containing chamomile. It's easy to grow lemongrass in your garden or start a flower pot on the balcony for ease of picking. Simply steep a handful in boiling water for five minutes. Honey may be added for a sweetener.

Of course there will be times when you do need modern drugs, so if these simple remedies don't have the required affect, be sure to see a health care professional.


shear stress

1:57 PM  
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Children of today are really no more different from the children of yesterday in terms of genetic makeup. However, if you examine the issue more closely you will tend to find that many children today have been given labels. For example, 'Oh, those are children with ADHD' or 'Those are the children who can't sit still.' Or 'That is the kid that always gets into trouble.'

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