Friday, April 27, 2012

Date

Yesterday was bring your child to work day. So my 17 year old sat in on a visit. The patient recapitulated her story. She contracted Lyme 15 years ago, and over the past two years things had really gone down hill. A one-time physically active/fit brilliant CEO became disabled with  profound fatigue, cognitive dysfunction and other constitutional symptoms. At this point I had treated her for over one year. I heard things I had never heard before.

Let me first say this is a happy patient. Six months of oral therapy prescribed by me, superimposed on previous, intermittent oral therapy prescribed by others had been largely unhelpful.

Intravenous therapy -  now into the forth month has made a magical difference. Cognitively she is almost back to normal, weakness and endurance are improving weekly.

Not wanting to share an  exact recipe, because I have found some patients have taken it as gospel, I limit my comments here. I will say very aggressive, somewhat outside the box antibiotic "cocktails" are frequently required. And in difficult cases I have found a combination of three drugs works best.

A common problem is that most Lyme patients look a lot better than they feel. This patient naturally has a sunny disposition and has never suffered with depression.

I really cannot imagine how horrible it feels to have tertiary neuroborrelios. (I also can't imagine what's like to have never felt  depressed).

But she told my daughter she had set a date.

If she was not better by a certain date she planned to commit suicide.

I never knew such as a date existed and I glad I didn't.

How many Lyme sufferers have contemplated suicide?  I hear the number is great. Recently a patient told me if he couldn't afford the needed care he would just let the disease progress and die.

I don't know what the message here is. That is for the reader to decide. Just comments from the trench.










16 comments:

anonymous said...

This was a disturbing post to read. Yes, I've had the suicide conversation with other Lyme friends. Mainly, we just wanted to die and often thought we would. Committing suicide required the energy and brainpower we no longer possessed, just like running a half marathon, working, or going to the grocery store. A lot of us are better now, still treating, but better, and we don't talk about suicide anymore. For the record, I don't suicide is a sin, but a brave and difficult choice, one that no one with Lyme should have to make. And, if there is a hell, can it really be all that different than living with Lyme?

fighting2bme said...

I was just passed an article about studies
In this area, my tired eyes will have to find & share tomorrow-night all Crystal

Will said...

I contemplated suicide just before my Lyme diagnosis. I was infected in 1997 and became disabled in 2000. 3 months later, I learned I had Lyme, but just before that the only reality I knew was increasing pain, decreasing brain function, and potentially moving into a place I couldn't medically advocate for myself. I told a dear friend that if I couldn't figure out what was wrong with me, I wasn't going out slowly like this, and I would take my own life. I asked her if she would talk to my parents and let them know they didn't do anything wrong, I wasn't depressed or mentally ill, but I was making a choice to end my suffering before it ended me on its terms.

I can't even believe I had gotten so sick to have this conversation, but I understand the psychology of suicidal thoughts in a way I wish didn't.

For everyone fighting Lyme (including me) my thoughts and best wishes are with you. Hang in there and keep looking for medical help and speaking your truth. The more of us that make our presence known, the less we'll be ignored, misdiagnosed, or judged. At least that's my sincere hope.

lymesuffer said...

I once sat crying at the couch talking on the phone with my treater(doctor) at that time and I said to her, crying: I look sometimes out of my window, and I just want to slam my head to the floor outside, so I won't feel this struggle anymore, just can't bear it no more sometimes..
And it's not that I dont want to live no more, yeah I do, but I sometimes can't take it anymore, it's so heavy, so so heavy..

But I am happy now to say, I am no longer in that position no more, still not totally better yet, but hey, I am à lot better right now and Thank God for it!

He is THE Only One who can help us!
God bless you all!

Unknown said...

Lyme MD - your presence has been requested Friday Night in Baltimore at the fundraiser - someone has a ticket in your name waiting - Gary G = patient = http://www.springforlymefundraisingevent.org/event-details/

Mrs Fab-ulous! said...

I am a patient of yours, though I have been fortunate to not need to come see you for the last 2 years.

I set my date and time. I even told my husband to get the kids out of the house. Instead, he flew a relative out on a flight within hours to stay with me. That was before I knew it was lyme and was being bounced all over my state of GA and hometown of MI seeking help.

When you are in that much pain, you just want it to end. As a mom of 2 kids, you know in your heart life would be better without you, so they could move on and be kids.

Thankfully, in May 2009, you believed in me and started therapy.

LYMEMJ said...

We have a huge group of Lymies in Florida, the US, Europe and even Africa, suicide is a topic due to desperation and neglect!

LYMEMJ said...

For the "suicidal thoughts" one remedy is drops of iodine, call them Lugol or Kelp, but few enough to not hurt the thyroid. Also this has to be clear that in many cases the death of brain cells obviously bring these thoughts and when there is recovery those thoughts leave. i say take Ivermectin for Lyme Disease and recover! Many Drs don't treat Babesia nor parasites in blood and the body so Lyme Patients will never recover! My thoughts proven to be real and sadly truthful!

Nicole said...

I am a 23 year-old Lyme patient. I've had Lyme for about 5 years now. In the last couple of months I have thought a lot about setting a date. I haven't set one, and my thoughts were in the range of 3-5 years in the future, not in the immediate future, but I have thought about it. Because with Lyme it sometimes feels like there is no end, and I just want to know that at some point there will be- whether it is because I go into remission, or I make things end.

Is there a point where it is ok, and people with chronic illness should be allowed to give up? There is a point where patients with disease like cancer are allowed to give up- their families tell them it is ok to stop fighting.

I understand making a date, and I don't know if I can disagree with it. Isn't there a point where we lose the right to try to guilt someone into living in pain and fighting so hard? I was educated as an engineer. I am a rational person. I see both an MD and a psychologist, neither of which classify me as depressed.

Thank you for posting this. So often these topics are written only when patients are described as horrible depressed and irrational- as people who made a bad decision in the moment. Not as rational, UN-depressed people who put real thought into this. Not saying it is a good decision, or the right one, but that it is something we need to have conversations about, and something we SHOULD be able to talk about, without fear of instantly being locked up as a suicide risk.

Precious said...

Yep, quite disturbing article to read, if the patient was never depressed how come she's setting a suicide date?

Suicidal thoughts interfere only when the patient is depressed or in a psychotic break or mania.

I would never take my life, not even if I get AIDS.

Lyme Disease

livingbygrace said...

Don't give up, don't let the buggers win!! This is the saddest/most encouraged I have felt. I am on the waiting list.
I wouldnt say never, precious. I am hoping you will never, ever understand how dark this feels, but I have wanted to die myself at times. I have had countless Dr visits with no one wanting to get to the bottom of this. Yesterday I was told I have polymylagia rheumatica by a Dr who 2 weeks before said I had fibromyalgia. He ordered 50 xrays of my joints and found I have arthritis in my neck, feet, hands, knees, ankles, wrists, everywhere they xrayed! The tests were to confirm his diagnosis of fibro. Then yesterday he said, how are you? I am hurting. Where? Everywhere. Sigh from him name 2 places. My ribs and shins I guess. What about your shoulders and hips? Yes they hurt too I was folding sheets and had a hard time.....wait he runs out and comes in with a paper. You have polymylagia rheumatica, this explains it. I will give you prednisone, you come back in a week. This will make you feel better. So I read, sudden onset,usually in a day or two sometimes overnight. My symptoms have been coming on for years and not just in my shoulders and hips. Onset generally is at 70 years of age, I'm 54 next month and had symptoms since my 40's. People with polymylagia wake up stiff but feel better as day progresses, I get worse as the day goes by. If you don't feel better next week then you just have osteo arthritis and ate aging like the rest of us. My mom who is in her late 70's, has less arthritis. That's it?
I so understand the desperation, people need hope, we perish without it. My hope is in Jesus, I know He wants me to seek Him and I hope you will have people in your lives that will lift you up, not treat you like Job's"friends" did in the Bible blaming him and dumping on someone already afflicted.
I'll be happy to be well, I'll continue to try to be content while I'm sick. I will remember my friend with cancer who gave her best, everyday! :)

Nicole said...

I too set a date. At an all time low, I prayed for a solution, path, anything to help...with the pain of 20 years. I was diagnosed one month later.

I even discussed my plans with my family. It wasn't an emotional discussion for me, it had become a decision of mercy and logic. Reading this post was very moving. It really hits home how much each of us needs to reach out in any way to help those get the support and diagnosis to save them.

Thank you. Nicole

livingbygrace said...

Thank you Nicole. I pray you feel better and heal too. I hope your treatment goes well, could you list some of your symptoms? It's very different when you have it a long time. I had so much pain in my right arm a month ago my husband wanted me to go to the hospital. After 2 full days of pain I couldn't use my right hand or arm. It started improving so I was able to use my arm again, I am very thankful! I'm starting to bruise badly, my liver functions fine 1 1/2 years ago are bad, my legs are on fire with heat and hurt horribly. I have been reading the same book since Christmas, I used to read a novel in a couple days, now I read, then reread because I forget what's happening. I have a younger sister who said I start a sentence and stop in the middle of a thought .
Again thank you brave people!
PS if it weren't for spell check, no one could read my mistakes!

marz said...

She sounds a lot like me. I too set a date, it was 4 years from the date of my diagnosis, my 44th birthday. But I am not depressed and I don't have suicidal thoughts. For me the date is a way reminding me of the persistence required, a way of keeping from getting discouraged when progress seems slow. I tell myself, "you know, you have to give yourself 4 years." When the date does come around, I'll probably just give myself a new one. For now, it is the date when I'm completely well, and gives me something to look forward to.

Mirela Zeicu said...

Ok, this post might have been disturbing but it does reflect the reality.

The user above is right, if there is a hell (which I hope we all know there isn't one, can it really be all that different than living with tertiary neuroborreliosis?"

I'd say it isn't.

Anyways, I am not for suicide, I am all for healing and the living the life we have, take your treatment, take your pain pills and life goes on, you are not alone you know.

By the way I have tertiary neuroborreliosis and I don't have money to get the treatment either.

boala lyme

:)

Unknown said...

I'm not aware of a disease that can cause extreme mental/cognitive and physical symptoms, and this is what makes Lyme and coinfections so hideous. I've had lyme/babesia/mycoplasma/bartonella since I was a child (my guess) with spikes and dormancy periods and probable reinfections in CT and WI bringing on additional symptom sets. When you live with negative symptoms for years but get no answers for doctors, you get worn out from constantly pulling up the bootstraps. You also wonder if you're trying hard enough and then become afraid what people will think (for those of us stricken by the anxiety symptoms). I finally started a downhill slide at 46 and saw many doctors and was told it was in my head after their usual tests showed nothing. It was a therapist who told me, "I think you have Lyme disease." I googled it, found an LLMD and am on the roller coaster to recovery. I have thought about suicide at times but would never do it because of the pain it would bring my kids, family and friends. And that thought, that I know I CAN'T do it, sometimes is more depressing. I have taken the time, while not being able to work or do much, to address underlying causes of my depression and stressors so that when they are egged on by Lyme et al, I can recognize this and know it will lift and pass and someday won't dog me. Lyme patients who were not believed by doctors or family or friends and who have to exist in this society where most don't realize how it operates and why we are sick yet look great--it adds a huge burden onto the physical recovery process. I will say that it has made me become more understanding of myself and others and stronger about "not being concerned with what others are thinking." This is huge for me and probably is for many Lyme sufferers who kept going even when they felt like they could barely move and so exhausted by pain. I recall thinking, If I'm in my 40s and feel like this and docs say it's age, the thought of possibly several more decades and feeling worse is intolerable. That is when I would wish I could die and then I would wonder if everyone feels like this but I'm just being a baby. So sad to think back on how unaware I was and how many people now are. Children who get Lyme or are born with it think that pains or feeling sad or sudden anger or headaches, not being able to concentrate or remember things, ear ringing, etc. is normal and they need to buckle up. I know I did when I was little, and I just found out my 12-year-old thought some of the same things when I brought her to my LLMD after a sudden attack of hands and feet swelling/burning/pain/itching. I had already suspected Lyme but now had my smoking gun. I think about kids out there who go through the same thing, but their parents have absolutely no clue. A regular pediatrician would have come up with the most lame "reason" and blown this off because her symptoms only lasted for a day. I know, because I have tried to have the docs/pediatricians address possible Lyme and they are useless zombies in that respect. With the epidemic proportions of undiagnosed people out there and few trained to diagnose them in this hugely gray area, it is survival of the fittest--those who are fit and lucky enough to track down a doc who can help them and who is admittedly a detective along with you and does not pretend to know all the answers.