Emerging Diseases

I have lyme disease and most likely have had it for
more than 20 years. I do not agree with
your statement that most lyme disease patients can
be found in bed.

I did not take to my "lyme bed" until the last few years
when my symptoms became debilitating and I was finally
diagnosed with lyme disease.

For the first 2 decades, I unknowingly suffered from lyme rage and had more than enough strength to destroy my first marriage with my violent behavior and destroy my relationship with my daughter as well.

I was an intelligent and attractive woman who performed well below her capabilities due to rage, depression, suicidal tendencies, fatigue, digestion problems, etc. etc. I went from doctor to doctor to find out what was wrong with me and was diagnosed as hypoglycemic and then ulitimately was hospitalized for a year of my life with a "personality disorder."

It was not until a few years ago when my husband started experiencing my same symptoms that we were able to diagnose ourselves and then had the arduous task of finding a doctor who agreed with us. We were lucky in that our Igenex tests came back "positive" (as many do not) for Lyme as well as Babesia.

The medical community needs to re-examine the incredible destruction that Lyme is causing not only in the USA but around the globe. Doctors need to be taught how to recognize Lyme symptoms and how to read Lyme tests. Lyme disease and its co-infections are an epidemic at large and they are not only dangerous in the havoc they wreak on the body but also in the brain.

I am willing to bet that a large percentage of inmate, mental patients and homeless people are actually lyme disease victims. I don't think that lyme rage is all that rare because of my own experience as well as watching my husband switch on and off from a kind, gentle, nurturing man to an angry, confused, depressed, suicidal wreck.

I appreciate the fact that you tied the chimp attack to the pastor murder and I thank you very much. The media should follow your suit.

I know that the police aren't releasing the name of the suspect, but the Associated Press says,
"[Illinois State Police Director Larry] Trent said investigators found no immediate evidence of a criminal background for the suspect. He said police were investigating whether a red Jeep parked outside the church belonged to the man.

The Jeep, which remained at the church Sunday night under State Police watch, was registered to the address of a 27-year-old man in an upscale neighborhood in Troy. No one answered the door at the residence Sunday.

A man of the same age whose mother's name also is registered at the Troy address was featured in a St. Louis Post-Dispatch article detailing his battle with Lyme disease. In the article, the man's mother said the disease left lesions on his brain and that doctors had diagnosed him as mentally ill before discovering the disease.

In the August 2008 article, the mother said her son was taking several medications and had difficulty speaking after contracting the tick-borne illness.

Police would not confirm that the man in the article was the church shooting suspect. The Associated Press is not naming the man because no one has been charged in the shooting."

Read the August 2008 story from the St. Louis Post-Dispatch here.

I too know that Lyme causes rage. My son once said of me (pre-lyme) that I had raised my children to be so sensitive that they should be sympathetic to an ant drowned by a raindrop. Now this is an exaggeration but I am the type of person who has always believed that kindness matters. Still, in my current lyme flare that followed a foolish decision to undergo a cervical steroid injection (which must allowed my low simmer level 2 lyme to zoom to a boiling level 10)- I can become enraged at the least provocation. It frightens me, and my husband. I cannot wait to hopefully get my lyme back to a manageable level. And, about 3/4 of the way through Cure Unknown, I cannot thank Pam Weintraub enough for her meticulously researched book on Lyme. Given her book, the movie "Under our Skin", and these horrendous news stories on the community impact of Lyme disease - it is my hope that physicians will soon begin to know, diagnose, and effectively treat this disease.

Would the IDSA doc have been so dismissive of a disease connection to the violent act, if the disease had been neurosyphilis, with observable brain lesions????

I think not. And yet both syphilis and Lyme are spirochete infections which can damage the brain. Damage the brain and you damage the mind. IDSA is a crock.

My three year old son is fighting Lyme Disease, and was also diagnosed with Babesia after a positive test from Igenex. It's a shame that the first two lab tests were not good enough to pick it up. He's in his tenth month of treatment, and has improved greatly although he still has some symptoms.

I fully believe had we gone the recommended "Infectious Disease doctor" route that was initially recommended after his pediatrician realized he wasn't getting well right away, he'd still be a very sick little boy. I did a lot of research and consulted many people who had Lyme Disease on lymenet.org and determined we should find a doctor who used the International Standards of Treatment. Thank God we did. During the past 10 months we had to visit an Emergency room on a Saturday because my son was exhibiting new symptoms and we were concerned he was going into menningitis. At the Emergency Room at the University of Virginia, I told the doctor of my son's Lyme Disease diagnosis, and offered to show him the pictures on my camera of the bull's eye rash he'd had a month earlier. That doctor wasn't interested and told me "Lyme Disease is up north, he probably just has a virus". A short time after that we did consult a Pediatric Infectious Disease doctor at the Medical College Virginia because we were considering more intensive IV treatment since the orals weren't getting him where he needed to be. The doctor at MCV, told us that inspite of his two positve Lyme tests, (which could be false positives in her opinion), all of his symptoms (fever, joint pain, seeing dots, fatigue and more), the bull's eye rash, the tick bite,... she couldn't treat him.

Makes no sense!

While I don't believe that Lyme Disease is responsible for this man's actions, I do hope it can shed more light on a disease that needs better and more consistent treatment from American physicians. Maybe if that had been done in the past, this man wouldn't have had the problems that surely had some impact on his choice, to take the horrific actions that he did.

Breaking this all up for neuro lyme patients like me who can not read or comprehend long, solid blocks of text.

Bettyg, Iowa lyme activist
***********************

Pastor killing: Another act of violence attributed to Lyme disease

By Pamela Weintraub

on March 9, 2009 - 6:30am in Emerging Diseases

Here's a quick post to supplement my story on the chimp attack in Connecticut, which some pundits attributed to a rage reaction caused by Lyme disease.

On the heels of the rage-filled chimp story comes a human version:

This weekend a man opened fire on a pastor in a church in Maryville, Illinois, murdering him with a rain of gunfire.

Here, too, the explanation for the attack has been given as psychiatric illness caused by Lyme disease.

Infected by a tick on the family farm in the early 1990's, the young man was, his family said, left with lesions on his brain.

There's no question that Lyme disease is a neurological illness. It has been associated with neurological disease for decades in rigorous peer review in the top medical journals in the world

For a quick review of neurological Lyme disease and its psychiatric links, check out the blog posts:

part one, part two, part three, and a psychiatrist gets Lyme disease.

Lyme disease may certainly form brain lesions much like those seen in multiple scleroisis.

These lesions are often reversible with antibiotic therapy, but are sometimes irreversible and seen in patient brain scans for life.

Can Lyme disease provoke rage?

Many psychiatrists and doctors working in the trenches with some of the sickest patients say the answer is yes, as do reports in the peer review.

But murderous violent crime is not the typical M.O. for a patient with Lyme.

Mental illness exists apart from Lyme disease and even adverse reactions to antidepressants and other antipsychotic drugs could provoke outsized rage.

Once psychiatric symptoms emerge from Lyme disease, outcomes may include everything from suicide to severe adverse reactions to psychoactive drugs.

The most common symptoms of neurological Lyme disease include:

neuropathies that involve buzzing and tingling,
nerve pain,
memory loss,
confusion,
and fatigue

Psychiatric problems like depression, anxiety, OCD, and ADD can be triggered by Lyme or other tick-borne infections, according to studies.

Panic attacks, hallucinations, delusions, and extreme rage have all been reported in Lyme patients but compared to memory loss and confusion, these presentations are rare.

A patient with severe neurological Lyme disease is far more likely to get lost on the road or have trouble reading than shoot up a Church.

While Lyme disease is not known for triggering killing sprees, the Infectious Diseases Society of America (IDSA) appears to have taken a bizarre stance by apparently dismissing most presentations of neurological Lyme disease at all.

"In some rare cases, people may have neurologic problems such as facial paralysis," the group concedes in a press release on the situation, listing this single symptom and no others.

The group cites a 95% cure rate for Lyme disease, failing to mention that the statistic refers only to early disease; that number has been called into question by some academic heavyweights due to new findings on Lyme strains.

But more disturbing, IDSA fails, in its release, to mention the late-diagnosed Lyme cases (and due to flawed tests, there are many of these) that give rise to the lion's share of neurological forms of the disease.

What is especially misleading is that the IDSA statement fails to take note of the true mainstream authority on neurological Lyme disease, the American Academy of Neurology.

That group, whose practice guidelines hold sway in mainstream circles on this painful and sometimes-devastating condition, says this:

If you or a family member have been told by a doctor that you have nervous system Lyme disease, regardless of age,

your symptoms may include headache, facial nerve palsy (Bell’s palsy), and meningitis (swelling and pain in the membrane surrounding the brain).

Rarely the brain or spinal cord may become inflamed, causing weakness or changes to the nerve impulses in parts of the body, or other symptoms.

Patients with nervous system Lyme disease may also have one or more of these symptoms:

radicular (sciatica-like nerve) pain, weakness or numbness due to nerve damage, or changes in cognitive function (thinking, reasoning, remembering, imagining).

Shame on you IDSA!

In a situation where balance is required, extremism, including exaggeration or diminishment of a real situation, only muddies the waters and leaves everyone confused.

On Monday, March 9, the Associated Press reported that that attacker, Terry J. Sedlacek, 27, of Troy, was charged with two counts each of first-degree murder and aggravated battery, for gunning down the pastor and then stabbing himself and two worshippers who tried to tackle him down.

Pamela Weintraub is the author of Cure Unknown: Inside the Lyme Epidemic and senior editor at Discover Magazine.

********************

Pam, well done as well as the posts shown above my broken up version.

YES, HOG WASH ON IDSA'S SHAPIRO, "The group cites a 95% cure rate for Lyme disease!"

That is so far wrong, it's pathetic. There are hundreds of thousands up to one million or more who have been CORRECTLY diagnosed with chronic lyme disease and millions more being misdiagnosed with 1 of the 300 other illnesses mimicking lyme disease! uffda!!

With the IDSA only prescribing up to 3 weeks maximum of antibiotics, and many giving ONE pill only to those just diagnosed PROMPTLY with lyme, and saying, "you're cured by taking the 1 to 3 weeks max pills". You've just created another CHRONIC LYME patient.

The IDSA has been trying to STOP our 2 federal senate and house lyme disease bills from even getting on the "schedules" of the house and senate.

It's amazing also that the medical dr. community paid almost $500,000 to NJ's House Rep. Frank Pallone, CHAIR of this subcommittee who has FAILED to put our lyme bill on their agenda to be discussed in full involving both the good chronic lyme literate mds, ILADS, vs. the BAD infectious drs., IDSA, who UNDERTREAT lyme patients causing them to become chronic!

BettyG, Iowa lyme activist

Up until recently since reading alot of new information I thought I was a flawed person.

I would say to my fiance I didn't use to be this angry person. I was level headed, extremely patient, rational, calm loving person. Their are still remnents of this person.

But on a regular basis I yell at other drivers, something I use to laugh at in others...Yell at my family and get in these wild rages where I feel like I have completely lost control of myself. It is not a pretty site.

Then of course after comes the guilt for such behavior. It is very hard to live this way and feel out of control of your own behavior.

I beat myself up for days after. It is alot of work just to remain calm and collected and is nothing like the person I used to be.

I would not wish it on my worst enemy. It is not fun to be me most days it is a very painful both physically and emotionally to the point of wondering what is the point of it all.

Feeling sometimes like my kids would be better off without me is a good feeling to have. I know it isn't true but doesn't mean the thoughts aren't still there.

My mom just mentioned last night what used to happen with Syphillis patients and the mental ramifications. She said then they loaded them with Penicillin and pratically eradicated it. Then she asks" Why don't they do that with Lyme?" I said good question.

She also says if there is some conspiracy behind it all which sometimes I wonder...She says so why don't they tell everyone they have CFS or MS or something and treat them with the antibiotics?...

I said sounds good to me...Call it whatever you want, I'll play along...Whatever it takes to get the antibiotics works for me!

Ann in NH

To be short and quick...

I have had several bouts of violence. Going into blackouts and physically assaulting myself and things around me.

Rage where I have desperately fought to control urges to go to public places with the intent of beating anyone and everyone.

Hey - dont they call us crazy - because we are creating our illness in our heads - yet when someone with the "self-inflicted illness" goes off the deep end and does the unthinkable...they LYME doesnt make us crazy???

People NEED to start Practicing COMMON SENSE...plain and simple...

BTW - Great Job Pam!!!

I just found out about a new movie on Lyme. Below, a link to a preview. From that page you can also move to others with more information about screenings. It looks like they are expecting people to request and schedule screenings in their towns.

http://www.underourskin.com/watch.html

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From the day I noticed those little ticks all around my bed then shortly after noticing the ever-growing bullseye rash around my thigh, I have never been the same physically or mentally. I have lost a lot of my mental capacity to keep calm and reason things out. I would act on impulse without considering the consequences and lash out on people for no reason. I have so much anger within me and its driving me crazy because this is NOT who I AM! I used to be the most empathetic and loving person. Would always put myself in other's shoes. This disease I feel is truly unique in that it transforms your body and mind into a totally different person yet on the outside you seem normal. It is truly torture. I can't count how many times I have tried to explain to people (family/doctors) my symptoms and how I feel only to be looked at as either a faker or a hypochondriac. I pray everyday for G-d to relieve me of this horrible disease because I have simply lost all hope in life and myself. I have no energy to do anything and am depressed all day thinking about what I have become. From all that I have read online (which is A LOT), it seems like no one is ever fully cured! My last hope is to try the hyperbaric oxygen chamber as from my research it seems like the one thing that is really able to penetrate the mind/body and reach those critters. Just waiting to get some $ as the treatment is costly. To all of you out there with this disgusting disease, I wish you the very best.