West Nile recovery takes only one year?

• By eoffg
• Posted September 5, 2008 at 4:16 am
• Report post

'Return to normal'?
What is their definition of normal?

• Reply

• By IngridGuerci
• Posted September 5, 2008 at 11:21 am
• Report post

Lies, lies and more lies. Where do these people get this information? Have they even met a survivor? Everyone should go to the bottom of the article and click on 'comments' and tell them where to go to find out about us. Maybe they'd even want to interview some (not!).

Ingrid

• Reply

• By One_Crazy_Hen
• Posted September 5, 2008 at 3:25 pm
• Report post

Here is what James J. Sejvar, MD, a neuroepidemiologist at the CDC Division of Vector-Borne Infectious Diseases and Viral Rickettsial Diseases of the National Center for Zoonotic Vector-Borne and Enteric Diseases has to say about long term effects of West Nile Virus in July 2007. Perhaps they should speak with him.

Emerging Diseases
West Nile virus infection can have serious, long-term effects
Neuroinvasive disease can cause poliomyelitis, cognitive disorders and lingering clinical syndromes.
by Kirsten H. Ellis
IDN Staff Writer

July 2007

Long-term effects of West Nile virus neurovasive disease, including parkinsonism tremors, poliomyelitis, meningitis and cognitive disorders, may occur in more than one third of patients with confirmed infections.

“Although the vast majority of the people who are infected with the virus do fine, you don’t want to take that chance of ending up having persistent, lingering problems,” said James J. Sejvar, MD, a neuroepidemiologist at the CDC Division of Vector-Borne Infectious Diseases and Viral Rickettsial Diseases of the National Center for Zoonotic Vector-Borne and Enteric Diseases. “Physicians need to be aware of these potential persistent problems following initial recovery and should remain cognizant of them as they follow up patients.”

Many people go on to recover fully from West Nile virus, but data suggests 30% to 50% who develop severe neuroinvasive disease have persistent problems that limit both functional abilities and quality of life. Since its emergence in the United States in 1999, more than 23,500 cases of human West Nile virus infection have been reported as of November 2006. Of those, 9,800 patients have neuroinvasive disease and 943 died as a result of West Nile virus infection.

The most common lingering effects are subjective, including overwhelming fatigue, difficulty with concentration and sleep disorders.

“It’s a smaller percentage who have the severe movement disorders and tremors, but all of them can be relatively functionally impairing,” Sejvar said.

Physicians should extend follow-up for patients with confirmed West Nile virus infection, including those with apparently mild acute cases, to assess impaired neurological and motor functions.

Sejvar based his recommendations on a summary he wrote on long-term outcomes of West Nile Virus infection. His summary, one of the first on long-term effects of West Nile virus, was published in Clinical Infectious Diseases.


Disease outcomes
West Nile meningitis accounts for about 40% of cases of West Nile virus neuroinvasive disease. Median patient age is usually similar to those with febrile illness. People with meningitis frequently have persistent fatigue, weakness and difficulties with concentration.

West Nile encephalitis occurs most frequently in people older than 55 and in those with compromised immunity. Fatality rates in hospital are estimated at 20% from West Nile encephalitis. Patients who survive acute illness with West Nile encephalitis can develop persistent neurologic sequelae. In one study, six (38%) of 16 patients with West Nile virus infection from the 2002 Louisiana epidemic had tremors and parkinsonism eight months after recovery from acute illness. In a North Dakota study, new or persistent tremor occurred in 20% of patients a year after acute illness, and tremors persisted more than 1.5 years in 18% of patients with confirmed West Nile neuroinvasive disease in a northern Colorado study cohort.

Poliomyelitis rates due to West Nile virus infection have been difficult to assess, but researchers in one study estimated poliomyelitis occurred in about 10% of patients hospitalized with neuroinvasive disease. Acute neuromuscular respiratory failure, the most severe manifestation of poliomyelitis in West Nile virus patients, is associated with high mortality estimated at greater than 50%. Facial nerve palsy, which could be estimated to occur in up to 70% of patients with West Nile poliomyelitis, is also of concern.


Outbreak predictions
West Nile virus peak years may be difficult to predict, but the geographical prevalence of the virus can be mapped and measured.

“It is notable that West Nile is endemic in most of the United States and there are certain regions that continue to experience hot spots or epidemics, especially in the Midwest and the western United States,” Sejvar said. The Northwestern part of the United States also showed West Nile epidemic last year.

There is no definitive treatment for most of the sequelae of West Nile neuroinvasive disease. The management of the conditions such as fatigue, movement disorders and polio is through supportive physical and occupational therapy.

Medicines provided to treat Parkinson’s disease elicit poor response in post encephalitic Parkinsonism patients, so people with West Nile virus neuroinvasive diseases would likely not benefit from Parkinson-specific medications. There have not been any randomized, controlled assessments of these treatments for West Nile virus.

“West Nile virus is a preventable disease and although the overall risk for developing lingering and ongoing problems is relatively small, it does occur and you don’t want to take that chance,” Sejvar said.

For more information:
Sejvar JJ. The long-term outcomes of human West Nile virus infection. Clin Infect Dis. 2007;44:1617-1624.

• Reply

• By MsJackson
• Posted September 6, 2008 at 12:28 pm
• Report post

I had both types of wn encephalitis and meningitis ... I do well with limitations on memory and tiredness and possible stroke 2 and a half years later. I recovered enough to be pretty productive, but I don't believe a person ever real heals all the way - it affects the immune system terribly.

• Reply

• By eoffg
• Posted September 7, 2008 at 3:40 am
• Report post

Though the article is mis-leading if you look at the actual research paper. Where for example, it notes that no neuro-psycholgical evaluations were carried out.

But the question that the research really raises?
Is why some people infected with West Nile go onto Encephalitis? With varying degrees of severity.
While for many people, it never progresses to this stage.
Which are the people that they speak of, who make a full recovery after a year.
This same question could be asked of Herpes Simplex, where I think that I read that about 10% of people carry this virus.
But only some develop Encephalitis.
So the real question this research raises, is why some people go onto develop Encephalitis, but others don't?

• Reply

• By WendyStation
• Posted September 7, 2008 at 5:24 pm
• Report post

Letter to the Editor sent today:

I’m concerned with this piece, esp. where it states/implies that folks touched by West Nile Encephalitis will enjoy a full recovery at or around the one year mark. I am not a medical professional; I am an encephalitis survivor and President of Encephalitis Global, Inc. http://www.encephalitis.ca; www.encephalitisglobal.org .

“Encephalitis” means swelling of the inner area of the brain (meningitis is swelling of the brain’s outer lining). The swelling comes and goes usually within 7-14 days. After this, the survivor faces their recovery, as neighbouring sections of the brain struggle to re-learn skills and abilities which were lost during the damaging impact of those first 1-2 weeks. This struggle has a varied success rate, depending on the intensity of the original inflammation. Recovery is usually measured two years post encephalitis, although improvements can continue past that time.

Following is a direct quote from my presentation to US Congress in 2004, “I see here, Ohio State University says in a recent study it was found people who were hospitalized last year with encephalitis, with West Nile encephalitis, they have reported problems 1 year after their illness including headaches, concentration problems, fatigue, movement disorders. Let's see, New York State, they did a study saying nearly two-thirds of severely infected patients still suffer physical and mental impairments 12 months after falling ill.”

I have received no response when contacting Dr. Loeb at McMaster University. I am concerned about the “it’s no problem” attitude of this piece.

Wendy Station, President
Encephalitis Global, Inc.
http://www.encephalitis.ca http://www.encephalitisglobal.org

• Reply

• By ape
• Posted September 8, 2008 at 4:13 pm
• Report post

clap, clap, clap of hands!! Very well said, Wendy. Perhaps the researchers should do some research~!!!!!
I wont hold my breath for a response from him.

• Reply

• By IngridGuerci
• Posted September 9, 2008 at 6:50 am
• Report post

Great letter, Wendy! I hope you'll get a response. They should know how many of us, just here, have residuals more than one year afterwards.

Ingrid/NYS
HSE 12/95 (that's almost 13 years ago) and I still have lots of problems.

• Reply

• By wasadoc
• Posted September 9, 2008 at 9:09 am
• Report post

I contracted West Nile virus encephalitis in Feb. 2003 and have spent the next five years recovering and still am not back to normal. My doctors say that I never will be, but I have recovered to a much greater degree than they ever expected. I disagree completely with this article.

• Reply

• By Hughbetcha
• Posted September 9, 2008 at 10:11 am
• Report post

"Return to normal," eh? Which is to say that the last 46 years of my life would have been pretty much the same were I never afflicted with e.?!? It's very hard to believe that someone with a medical degree would make such a claim with a straight face. Too bad "Mr. Rogers" has passed away... he could sit down with these folks and say, "Can you say 'residuals'? Sure. I knew you could."

• Reply

• By one_lil_red_hen
• Posted September 9, 2008 at 3:19 pm
• Report post

The article says:

In a 2003-2007 study of 156 Canadians afflicted with West Nile virus disease, including some who developed potentially fatal meningitis and encephalitis, the average time to recovery was about a year, said principal investigator Dr. Mark Loeb, an infectious disease specialist at McMaster University.

"If they're infected with West Nile, where they have West Nile fever or they have West Nile virus meningitis or encephalitis, these data can tell them what to expect, that gradually over about a year their mental and physical function generally and on average will return to normal," Loeb said from Hamilton.

While there's always some variation among individual patients, Loeb said, "I think at least it helps patients and physicians and their families to know what to expect over time."


I'd like to say this, with a total number of study subjects of 156, I'd say the data is hard pressed to prove anything, that data is as good as saying, only 1 in 150 people who contract WNV will develop meningitis or encephalitis, because those are just guestiments based on the number of reported cases.

Secondly, the article is stating that of those 156 subjects, GENERALLY AND ON AVERAGE recovery time was a year. The article also doesn't state how many of those subjects were affected with the neuroinvasive form of WNV, ie meningitis or encephalitis. (wishes someone would study just those people affected with WNV meninigits or encephalitis for long term effects).

Thirdly, there are also the unknown number of cases of encephalitis survivors who have fully recovered from any type of encephalitis induced illness, ie. herpes simplex, WNV, St. Louis, bacterial, etc. etc.

Fourth,

And finally, my personal opinion as a survivor of WNV meningoencephalitis. I believe what the study shows is inconclusive and theoritical in substance. I would not give this article credit for providing any valid information.

A report like this is neglectable simply because it gives the public the idea that generally and on average, everyone will be recovered by the end of the first year of their illness by either WNV Fever or WNV Menigitis or Encephalitis.

Another thing the study fails to discuss is what methods they used in their study, ie, MRI, CT, personal interview, participants medical records, neurological evaluations or even, neuropsychological evaluations were used, or if their study results are simply based on a questionaire.

I'd say, they've received their 15 minutes of fame, but was it worth the price of admission?

~hen

• Reply

• By whyisjane
• Posted September 10, 2008 at 3:20 am
• Report post

Wendy,

Thank you for trying to bring AWARENESS to our wonderfully "convoluted" UNEDUCATED government. I hope someone there pays attention !!!!
Just wait til one of their own family is "afflicted" with encephalitis. Maybe then, they'll PAY ATTENTION!!!

Hooray for all your efforts ---- especially for setting up this site. Before I found "encephalitisglobal", I spent many, many, many years "isolated", made to feel like some kind of "freak" by the same "so-called medical professionals" that are suppossed to "help".

Unfortunately, it's taken the arrival of "West Nile Encephalitis" for anyone to realize that encephalitis affects a lot more people than the "general public" (especially the government - HA!!) realized. We can not be treated like "lepers".

I discovered that even my family had been given "false information" by doctors during my recovery so that once I appeared "normal" (whatever that's suppossed to be anyway) that no other treatment was necessary (in my case that meant no rehab, no psychologist). Therefore, it came as a "surprise" to them when I continued to have seizures, memory ,communication problems etc. ---- so, unfortunately my family chose to "pretend" that I could get better only if I "tried harder" and eventually they "gave up" and rejected me. At that point after coming out of a deep, deep depression; I decided to live the "best life I could" and looked for "help" away from my family and had to leave them behind.

Luckily, many years later, the few members of my family that are still living decided that "maybe I was right all along" and they finally "agreed with me" (that I had permanent "brain damage" and may have needed assistance).

Despite the fact that it was many years after the "acute
phase of my recovery", just the fact that they "became aware" was a "victory" for me.

As of Oct.15,2008 it will be my 30yr anniversary from the date of my first hospitalization ; Oct.15,1978 !!!!!!!!!
I'm amazed that I've survived this long (my POST encephalitis life now is longer than BEFORE the illness). I still savour each day as a precious gift even though my health is finally deteriorating (all those seizures, all those pills, all those many, many hospitalizations -- I've lost count -- have caught up with me). Life is beautiful and I will continue to fight to stay alive as long as I can and still also strive for the best quality of life possible.

I wish all of you only the best and hope with all my heart that anyone afflicted with E now does not have to suffer the way I did for so long before they get the help they need to recover.

Keep up the good fight!!!

Peace & Love, Jane (aka whyisjane)
jlabie@att.net
Feel free to contact me if you need any help to bring awareness for any future persons trying to recover from E or help bringing awareness so that the "stigma" attached to survivors of E (with their "difficulties") can end.
KNOWLEDGE IS POWER!!!!

• Reply

• By AnneF
• Posted May 22, 2009 at 11:29 pm
• Report post

I am new to this site. I contracted West Nile Encephalitis in September 2007 and was hospitalized for several days, home from work for a month, and then worked parttime another two months before returning full time. I still have residual effects - short term memory difficulties, severe cramping in my left leg, swelling of the left leg, fatigue, muscle weakness and issues with balance and coordination walking. I have worked long and hard to improve the situation, but I don't see symptoms disappearing soon. It's nice to have found a group of supporters here.

• Reply

• By likaloha
• Posted May 23, 2009 at 1:45 pm
• Report post

Thanks to everyone for your replies/information... this is the most input I have ever found/the most survivors I have ever found since I got a case of W.N.
meningoencephalitis in summer 2002..I have 'spoken' to 'little red hen' here on a few occasions, and did not realize that there were more of you affected by WNV here.... like the rest of you, I am appalled at the articles info that stated that 1 year is the typical length for recovery...I am almost 7 years post virus, and while I am not as sick as while during my acute phase of the disease, I am certainly functioning at a lower level than ever!! After leaving the hospital and having I.V. therapy at home for 2 weeks, I never had any kind of follow-up treatment/therapy/etc.... and no neuro that I have seen since has had a clue about any of my residual problems.. a few have tried to treat my migraines(which I have had since childhood), one said that my problems were due to bulemia(I have IBS/GERD/ulcers, etc), and no one has even thought to check my brain to see what damage may have occured and how it is affecting my body (thyroid/adrenals/sleepetc)...and this doc is my pain doc.. he is sending me to get a SPECT scan and to someone who can read and interpret it.
I do not see my condition improving anytime soon... and with the addition of having to fight with our insurance company for almost everything, and having to fight to get my disability (yes, I can barely function most of the time, have several disabiling conditions, and have been turned down for 3plus years now)...I am sure articles like the one cited above do not increase the odds that my disability insurer will realize the extent of my problems!

I wouldlove to speak to others who have these same issues...I realize that most of you, like me, have limited energy and cognitive reserves, but like I have been communicating with one other member here when we have the energy, I am willing to try hard to be responsive.

Thanks for the information!!! Lisa

• Reply

• By dannon
• Posted May 23, 2009 at 1:57 pm
• Report post

recover from different kinds of encephalitis couldn't be grouped into one definition. Different organisms hit different kinds of tissue and cause different kinds of damage.
Even taking one type of encephalitis - say HSE - you couldn't say how long it takes - it could take month to a decade depending on hoe ill that person was before treatment and some other things.

Now this article in particular says "average" is about a year -- that would mean weeks to two years depending on severity.
It is also focused on West Nile Fever in that year's average. It clearly says people with meningitis or encephalitis could take longer. Sound pretty accurate to me.
-dannon

• Reply

• By IngridGuerci
• Posted May 23, 2009 at 2:09 pm
• Report post

I went to the website and wrote a response, too.

Ingrid

• Reply

• By hoboswife
• Posted May 23, 2009 at 6:29 pm
• Report post

Seems to me that this is a uneducated person writing this article. Only because he states that without a doubt there will be a full recovery.

Some accurate things are...1. there's always some variation among individual patients
2. further studies will be needed to determine their long-term prognosis.

Fortunately...not all people are educated in the long term effects that enceph can have, the way that we are educated....personal experience.

Hoboswife-Kim

• Reply

• By IngridGuerci
• Posted May 24, 2009 at 12:04 pm
• Report post

Wendy and I both went to this website and left our comments.:

>>ETA for encephalitis recovery
I have to disagree with your research. I am part of Encephalitis Global, Inc. I had HSE in 12/95 and I know that this type of encephalitis is different than WNV but some of our members are survivors of that and believe me, after a year, five years, etc., they are not back to 'normal' and probably never will be. Encephalitis is such a rare disease I'm wondering where you got all of the survivors to reasearch. Ingrid/NYS/HSE 12/95 (I was 45 years old)

Submitted by Ingridrg at 2:08 PM Saturday, May 23 2009 <<

>>ETA for encephalitis recovery.. one year?
Learn more about all types of encephalitis (including West Nile Encephalitis), from the people it has touched. Visit Encephalitis Global Inc. at www.encephalitis.ca .

Submitted by wendystation at 4:11 PM Sunday, September 07 2008 <<

• Reply

• By dannon
• Posted May 24, 2009 at 2:23 pm
• Report post

Ooops, I see this is an old post, renewed.
Still, the article reads right to me.
Its not about encephalitis, it includes some people with encephalitis, but they clearly explain they didn't include people with long lasting serious neurological after-effects of West Nile Encephalitis.
I should check dates on these posts before replying.
-dannon

• Reply

• By Ron57
• Posted November 3, 2009 at 6:30 pm
• Report post

I am new to this site, after looking for some info on lingering affects of West Nile. I was diagnosed in September, 2004 with WNV. Being a cancer survivor (myeloma) and having a stem cell transplant in 2002, my autoimmune system is compromised. I was in a coma and hospitalized for 6 months. Went home after 6 months with a trach and unable to walk. With PT, I have made some improvement. I walk with a cane, but continue to have vision, balance, and fatigue problems. Looking forward to monitoring this site. -Ron

• Reply

Add to the discussion