No hope left

What a coincidence! I’m a 54 year old man with chronic neurological Lyme disease. Looks like I still have a couple of co-infections (Babs & Bart). I also have a genetic limitation in getting rid of the endotoxins (HLA 15-6-51). I haven’t been able to work in three years, and I receive no disability. Insurance pays for little or none of my treatments, we’ve burned through a horrifying amount of assets, and I have a son in college. I’m pretty isolated, and all of my emotionally balancing techniques are failing me, so I sometimes end up here.

My intent here is not to make this about me, but to let you know I have an understanding of what you might be experiencing. Although, we could compare symptoms and maybe play a game of one-up. ;^). While I do struggle with going on, there are also times I find myself laughing out loud at the ludicrous nature of the symptoms, because some of them just can’t be shared or explained to anyone. In the last two months, my care has shifted from fighting symptoms to acute issues, and a few systems were taking very hard documented hits.

Here’s the deal though. This last Wednesday, I tuned into a blogspot talk (that I thought was all live, but part of it was not). It was from Columbia University. Two psychiatrists were giving their findings about Lyme, suicide, and depression, as suicide amongst Lyme people is now recognized as being atypically high.

While I attempted to take some notes, I couldn’t write coherently, and I had a great deal of difficulty listening to the speaking pace of these two New Yorkers. All of the statistics were distressing, and when my brother later made an impromptu call, I was fighting back tears.

BUT, as awful as the myriad of symptoms can be, they have found that people with Lyme have worse depressive symptoms than other people dealing with chronic diseases. Processing speed can be lower, and memory poorer. If you poke around Columbia’s site, you may recognize symptoms from the neurological section of the Chronic Lyme page. It’s probably worse because other diseases may not include corkscrew bacteria working on your brain and nerves. So the depression is not merely psychological, it is also physiological on a level seen with few other diseases. I know this may not sound encouraging, but in a way, it is.

I share this with you, not because I would blame you for doing ending your life (heck, we could have a party!), but because Columbia seems to be understanding it better, and are doing what they can to manage the cognitive desktop portion. They had some encouraging treatment interventions which include fast acting anti-depressants (ketamine) carefully administered through IVs to get people out of the danger zone until a more traditional antidepressant approach can be administered.

mdjunction has a pretty good Lyme community, overseen by Lyme sufferers who, at times, seem to know entirely too much about the disease. They list suicide prevention resources, and some of them have first hand connections with those who have taken their lives, so the fallout is there too, if you hunt for it. But if nothing else, they know what it is like to have your world shrink so dramatically due to limitations, and they are as supportive and understanding as anything you’ll find.

It would be a real bummer to end it (or blow ending it and end up worse), get recycled, and have to overcome similar obstacles in the next life. Please take a look at what Columbia is doing, print stuff out and try to educate your doctor. Even LLMDs can use a little show and tell. The good ones don’t have egos and are trying to help. I know these suggestions can seem overwhelming, especially if you are having a week where basic hygiene is a challenge.

Check out the support at mdjunction too.

Sending you a virtual, non-creepy hug.