Looking Back at 2013 – Memorable Blogs
Lyme Disease and Suicide, An Ignored Problem
Being active in the Lyme community, I am starting to wonder when Lyme Disease will get the media attention it is going to require to expose this terrible epidemic. I don’t get it, it has all the edge you would think a news story would need. It has denial, corruption, conspiracy, and death. And sadly, many of the deaths are suicides. I have read time and time again that suicide is the #1 cause of death for those that suffer from Lyme Disease. Yet, I can’t find any statistics. Why are there no statistics on this? Why is noone studying this?
People who are not aware of Lyme Disease, particularly, “chronic Lyme Disease,” might wonder why so many would commit suicide. I mean isn’t it a simple, easy to diagnose and easy to treat disease? Well that is very far from the truth, even though your typical mainstream doc might suggest this. You see, Lyme tests are very inaccurate. When you go to your doctor with symptoms, which might possibly even include a bull’s eye rash, drs rarely recognize Lyme Disease. They are just not educated on it. Symptoms of Lyme include headache, fever, achy joints, neurological symptoms and many more. All of these can be confused for other conditions. When not treated right away Lyme disseminates throughout your body becoming second stage Lyme and eventually third stage.
Here are some of the reasons I believe people with Lyme Disease commit suicide.
1. HOPELESSNESS BY LACK OF EDUCATED DOCTORS
During the search for answers on what is making you sick, tests are not showing any real answers. You’re symptoms keep getting worse, and you’re wallet is getting emptier. You are trying to hold down your job and maintain your family or lifestyle. In the meanwhile you are getting sicker and sicker. Drs are not believing you and filling your charts with labels like hypochondria, fibromyalgia, chronic fatigue disorder, and many other conditions without looking into the true cause of what is causing your symptoms.
Many doctors also don’t know that there are several tick borne infections, not just Lyme Disease.
As the patient gets sicker, but the inaccurate testing is not showing up any cause for the symptoms, the drs and patients alike start to get frustrated. Patients spend all their money on treatments and different drs without getting any real concrete answers. This leaves the patient just drained and feeling hopeless. You grow up thinking when you are sick you can turn to doctors. With Lyme, this is not the case. Sometimes they become your worse enemy.
From a poll I did in my Lyme Support Group
Quotes from a Lyme Poll from a Lyme Support Group (Names have been removed)
When asked if a patient’s doctors knew to test them for other co infections of Lyme Disease patient’s responded:
* “All of mine refused. In fact my old MD who just dismissed me, and told me I would be dead by now if I had babesia.”
* “One dr said to me, what the hell is that? when I asked him if I should be tested for Bartonella or Babesia.”
* “My primary care doctor originally diagnosed me positively with 3 bands of lyme disease. He didn’t bother to test for coinfections, and didn’t even want to prescribe me doxycycline. So much for their hippacratic oath!!”
* “My doctor had no idea!! He thought I was crazy! He said get out of the house, get a part time job. Oh really, I hardly had the energy just to get to his office! Ugh doctors need to be educated!!! When I was given my first blood test to check for lyme it came back cdc positive. I took that plus all my scary labs to my ex doctor. Maybe if someone comes in with my symptoms he’ll think to test for lyme.”
When asked how many years it took for patients to get diagnosed with Lyme Disease patient’s answered:
* “14 and 3 quarters, my brother 11, my sister 8, my mom 33.”
* “25 years”
* “Over 30″
* “I was misdiagnosed with MS in 1995, but have been sick off and on before that. Was properly diagnosed in 2007.”
* “24 years – out of the country in the U.S. (I am Canadian).”
* ” One internal medicine doc. One rheumatologist. One neurologist. And too many ER doctors to count! At that point, I gave up on doctors altogether and turned to the internet. I felt I was dying. I knew it was up to me to save my own life. Finally, through much internet research, I discovered Lyme. I thought my symptoms fit to a T. After that, I found a LLMD and had my diagnosis confirmed. I have had Lyme and co-infections for over 25 years and wasn’t diagnosed until 2008, 23 years after becoming infected.”
When asked how many doctors did you see before getting diagnosed patients answered:
* ” Too many to count! 7 negative tests before positive through igenex.”
* ” Hard to answer this one since I was diagnosed till I as 30… Who knows how many docs I saw as a kid…”
* ” 5 doctors, 17 appts”
* “After 22 yrs. Undiagnosed and I wasn’t keeping track, so I can’t really say but a guess would be 15.”
* “Probably in the 15-20 range.
Being that doctors have a hard time accepting Chronic Lyme Disease as a real disease, this trickles down to the families and friends of Lyme patients. Patients are constantly questioned by their own loved ones as to why they are not better with treatments, why their symptoms come and go, why no tests show Lyme Disease. Lyme patients start to lose everyone around them and feel isolated.
There is also the aspect from the families and friends view: “I don’t know what to do, or how to help?” Friends and families stop calling because they simply don’t know what to do. They don’t know how to help someone who’s doctor doesn’t know what to do. It’s hard for people to feel helpless. It’s easier to avoid the situation then to sit there not knowing what to say to the sick person.
Quotes from a “Isolation Poll” from a Lyme Support Group
(Names have been removed)
* “Even on good days it’s difficult to be out with friends because my former support system of friends no longer exists.”
* “Completely….my whole personality has changed due to the isolation and feelings of abandonment from my former “friends”.One of the most difficult aspects of lyme in my opinion.”
* “I have a friend with lyme. she gets around good and still has her job. she said she hasn’t been by to visit me and that she was sorry. she continued;, everytime I look at u, I get afraid that one day I will be as bad as u, so its better for me to just stay away. do I feel isolated. every minute of everyday..”
* “Extremely isolated, but much less now with all my fb. Lyme groups! It was desperate isolation before I was dx. Being told this was fibromyalgia and seeing others being able to do so much more than I could with”fibromyalgia”.”
* “This is the most isolated I have ever felt in my life. I have been through an abusive marriage, divorce and tons of other things but Lyme leaves you completely alone. Everyone expects you to wake up one day and just be over it.. To go out in the sun and feel better. And they tell you to be careful not to make “Lyme” your life, when it is your life.. You feel it when you sit down, when you stand up, when you eat, when you sleep and when you DON’T sleep.. Isolated, yes.. and guilty, because they get angry for not “doing enough to just pick your self up”….”
* “i had felt very isolated but then i reached out to many of Facebook’s lyme support groups and found my second family.”
* ” I do, I still get the, “well you look fine” treatment from people I never woulda thought would treat me that way.”
* “My daughter feels totally isolated. She no longer has a peer group at school since she has been at home more than at school. She gets stir crazy at home, but has so little energy for doing things outside of home.”
3. DEBILITATING SYMPTOMS
Each person is different in how Lyme presents itself in symptoms. There are a multitude of symptoms since Lyme can affect any organ, multiples organs, and changes throughout the course of the illness. Lyme can cause headaches, fevers, joint pain, nerve pain, anxiety, depression, shakiness, unstability, dizziness, vision distrubances, auditory disturbances, hallucinations, seizures, paralysis and death.
The ever changing symptoms keep us at home. Many Lyme patients find themselves becoming “agoraphobic” that is, afraid to leave home. Even if you have a moment or two where you feel ok, you don’t know what symptoms will strike next and when. You can be feeling halfway ok and think you will be able to run and grab a gallon of milk, then as soon as you get to the store youre legs get weak, your heart starts to pound, you break out into a sweat and feel faint. So leave the cart in the isle, you run back to your car (or crawl if you have to) and drive home. It’s embarrassing. This routine of evolving symptoms that comes out of the blue keeps us isolated. It’s much easier to experience symptoms at home and be able to just lay down if you need to, then to be out at a family reunion and have an “embarrassing attack” in front of everyone.
I am barely even touching on the severity of Lyme symptoms. Several Lyme patients deal with severe daily pain, paralysis, not being able to eat, seizures and just plain strange symptoms such as internal tremors, unexplained jerking, memory loss or what some patients describe as “brain fog.” One patient explains her worst daily symptom like this, “I wake up feeling like every inch of energy has been drained from me, I feel like my mind is alive in a body that is slowly dying.” Another explains, ” I barely have the energy to take care of my daily needs, if I shower it’s a miracle, little less brush my teeth or hair.”
From a poll on “Worst Symptoms” done in a Lyme Support Group
(Names have been removed)
* “Hearing loss.. Almost deaf in right ear. Hate having a hearing aide.”
* “Mind processing.”
* ” Long term fevers and fatigue.”
* “So many, most prominent, fatigue, pain, neuro and muscle pain. Not to speak of brain fog. Sorry can’t say which is worse, they all feel bad all of the time.”
* “My brain will never work the same, have to ask lots of questions, because I can’t follow anymore, or mutitask, or I go crazy if there is too much noise, and I can’t follow anything. I feel like my 93 year old Granddad at 42. I forget what I’m saying or doing, and it takes so much longer to do things.”
* “Seizures (because they are so very scary and have taken my independence), the heart related stuff too. Fatigue (because it makes me unable to do anything physically speaking, even walking to the bathroom sometimes), severe brain fog that has not only wiped out my short term memory, but my long term memories also! I used to play so many songs on the piano, literally hundreds, by memory. Now I struggle to remember just one.”
* “Fatigue and pain with twitching all together.”
* “Pain but the neuropathy is causing my muscles to waste away so very weak and lots of pain from it all….they say I will end up in a wheelchair next if it doesn’t stop and then not able to care for myself…”
* “Joint pain, fatigue, gastrointestinal issues.”
* “CFS ,pain and panic attacks.”
* “The one you are dealing with at each given moment?????? For me, it was the loss of usage of arms and legs, the tremors and the pain….but as I said, then you get whacked with anther and taking one day at a time meant getting over that particular symptom for the day. It changes so darn much.”
4. FEELING LIKE A BURDEN
With Lyme Disease you end up feeling so sick and weak and dizzy that sometimes you can not perform the daily tasks you need to. Showering becomes overwhelming, getting dressed, brushing your teeth, standing for any length of time becomes hard with the dizziness and pain we experience. Cooking dinner or cleaning house almost impossible. We stop being able to do these things not only for our family but for ourselves. We don’t want to ask for help. This leads to feeling like a burden. Not being able to attend events. Having to constantly cancel with friends or family members puts a strain on all relationships including making you feel like a burden to your own family. Not being able to be a mom or dad and play with your kids is especially hard. The ones you were taking care of now need to stop everyting to take care of you. The guilt it relentless.
5. LYME CAUSES DEPRESSION
Robert C. Bransfield, MD is a psychiatrist who works with Lyme patients. In his article, “Lyme, Depression, and Suicide,” he says that the #1 psychiatric symptom of Lyme Disease is depression. Here are the many reasons for that:
Patients struggle with a multitude of issues, from not being believed, to terrible symptoms, to losing all their loved ones. Just trying “to be” on a normal day is a struggle for Lyme patients. This going on day after day for several years without much support, leads to depression.
Lyme Disease affects multiple organs including one’s brain, (encephalitis, meningitis) endoctrine system, (thyroid dysfuntion) leading to depression and other psychiatric conditions. Dr Bransfield states that, “In my database, suicidal tendencies occur in approximately 1/3 of Lyme encephalopathy patients. Homicidal tendencies are less common, and occurred in about 15% of these patients.”
From a “Depression Poll” done in my Lyme Support Group
(Names have been removed)
* “My daughter has severe intractable depression, with severe intractable insomnia with it.”
* “Severe depression….to the point of suicidal thoughts.”
* “Dealing some days and some days well…under the rock…for my own protection..”
* “Off the charts depression…..Chronic illness in it of itself causes depression, and then when the lyme manifests itself in our brains its a depression train wreck! oy….have to take antidepressants.”
* “I don’t know of anyone with lyme that doesn’t deal with depression at one time or another. my doc just increased my dosage and its really helped. sick for years and yeats, who would not be depressed that the life they had was over, only to try and start another one with such limitations and still remain optimistic. dealing with insurance, being a burden, not being able to do what ur greatest passion is, watch others do your work.. its a struggle for us all. GOD PLEASE help and bless us all.”
* “It was always with me, looming over me.”
6. WATCHING OUR FRIENDS DIE
As we are all struggling to survive this disease, Lyme patients have formed a tight community. We all get online and talk to each other every single day. It is the only support or human contact many people get. When you turn on the computer and see you have lost another friend to Lyme Disease, usually at their own hands because they just coulnd’t take it anymore, you’re heart sinks. You want to scream, you want people to notice, you want this disease to be over.
From a Poll done on “Losing your Friends to Suicide” in a Lyme Support Group:
(Names have been removed)
* Sidenote~ Notice everyone who answered had experienced losing one of their “lyme friends” to suicide.
* “Saddened and Scared”
* “Wishing she could have hung on a bit longer because she had just started treatment a few months before. I’m still crying. I’m crying for the pain she was in for so long and the pain she went through mentally.”
* “I feel like that was something that I was faced with in the past and could possibly face in the future. I hurt for them. I know how desperate the pain makes you. Just since then I have learned to never carry out rash actions without regard to my future.”
* “I cry… My heart cries. Because I know all too well exactly why…. Why must we keep suffering. Why. We all are suffering from this and it is so criminal what the CDC an IDSA are allowing to happen. We are dying and will unfortunately continue to die from this until something or someone does something to CHANGE this crucial epidemic.”
* “Sad and frustrated and I wonder how long it takes before we give up. Its so difficult for us to get through each day. My heart breaks and is scares me. I become afraid for all of us.”
* “As the mother of a sick child, I think “Therefore but the grace of God go I.”
* “A piece of me goes with each one. It really does. Even if I didn’t know them personally, it really gets me , because I know the life they have lived, I know the suffering they’ve known, and my heart breaks.”
* “It feels like another piece of my heart is being torn away. With all that we do to bring about awareness and change….it doesn’t seem good enough when we loss a part of our family (Lyme family).”
* “Devastated and hurt…I feel kind of small, insignificant, helpless in not being able to do more…..my prayers and heart go out to the loved ones and to all facing this battle.”
* “Devastated. I’ve cried so many tears for people I’ve never even met in person but came to know through our online Lyme community. I feel so mad because their deaths could have been prevented. Their family and friends didn’t have to loose them! It’s an outcry we can’t get the medical care we need and have to suffer to the point that death seems like the best option.”
* “Anger & Devastation…..will anyone listen?”
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