When someone you love is sick - being helpful

I've been thankful that there has been more and more written about what is helpful and unhelpful to say to a chronically ill friend or family member. As for myself, I am still learning! Sometimes I say things to sick friends that are too bossy, too "helpful", making too many assumptions. Often my friends and family are wonderful, but sometimes they aren't, or someone I barely know will make an infuriating statement or suggestion.

So I'd like to start a conversation about this, because I am not prepared to write something comprehensive. Here are some feedback based on my experience:

Excellent general rule - listen and ask thoughtful questions way more than you talk or make suggestions. This works for almost every situation in life, so you can't go wrong. Two ears, one mouth - it's not an accident.

Negativity - If your sick friend is really negative, listen and sympathize. I know I feel really listened to when I hear "I'm just so sorry you have to deal with this, it's so unfair."  If it starts to feel unbalanced and whiny to you, don't start in with suggestions. Maybe try -" that sounds so damn hard. I'm happy to listen if that's what you need, but I'm wondering - do you feel like you have the resources you need to tackle this? Is there something I have the ability to help you with?" Maybe they need help organizing their medications, or cleaning their house, or something else you can actually be helpful with. Maybe they just need someone to hear them out and to be that person who understands the depths of their challenges.

Great Ideas 1 - If some diet or supplement or lifestyle change has helped you feel better, be happy but not pushy. Chances are pretty good the person you're listening to has heard of it if they have been sick for a while. Sick people tend to develop the hobby of researching how to get well.  Feel free to celebrate your own success in feeling better - I love to hear about successes! - but approach it from the point of view of "I'm so lucky I found this thing that helped me so much with x. I know the search is complicated and hard, and maybe there isn't always a solution, but I really hope one day you find more things that help you."  

Great Ideas 2 - If some diet or supplement or lifestyle change appeals to you because you just read something really awesome about it -great! Feel free to tell me about it. But like this - "hey, I just read about this x thing, and I'm wondering if it would help me. I know you've tried a lot of things to get better and I'm wondering if you have any experience with it."   Or maybe like this "Wow! I just read about x and I'm so excited to try it because I think it will help me with y. Then I got to thinking - you must run into ideas like this all the time that you think will help. How do you decide what to try and what to not bother with?"

Withdrawal - Haven't seen much of your sick friend lately? Invited them to happy hour and to see this great band and they never come? Ask them what you can do. Tell them you miss them. For some people, withdrawal is survival - they can only manage a very limited amount of social time. If you are not in their inner circle, visiting with you may be just too much. For others, they would love to see you, but it has to be structured in a way that they can manage. So tell them you're not sure what they are capable of, but you miss them and you'd like to be a part of their lives. Is it best if you just send check-in texts/emails? Phone calls? Are some visits ok? Would they like to be invited to social events in case they can come (with carte blanche permission to not show up), or would they rather not?

Those are my starting ideas. It seems like they all come down to - don't make assumptions that lead you to be "helpful" in unhelpful ways.  You probably have little understanding of that person's experience unless you have taken the time to learn about it from them. They are probably experts in their illness, and they need you to be their friend, not their savior.

 Any thoughts?

Chronic Lyme - the controversy and the details

I’m usually reluctant to wade into the battle of whether chronic Lyme “exists” because I just feel annoyed and weary before starting. I remember in the 80's people questioning whether the G-spot exists – huh? Just because you couldn’t point to your pancreas doesn’t mean it doesn’t exist, it just means you don’t know much about it. Same with G spots. Same with chronic Lyme, in my opinion.

So I’ll dip just a toe in. The argument that has caused a massive schism in medical treatment of Lyme disease is whether the symptoms that persist after some treated cases of acute Lyme (taking antibiotics for at least several weeks) are due to ongoing infection or to a syndrome of unknown, non-infective origin some have called “Post Lyme Syndrome”.  On the surface this seems like a pretty simple question – is there or is there not living Lyme bacteria left in the body after that first phase of treatment?

But the answer is not simple – the studies that have been published show mixed and confusing results. Some tests clearly show live bacteria, because they can be grown in culture. Others use DNA-based tests that cannot distinguish between dead and living bacteria. So why do I (and many physicians who treat chronic Lyme) believe the bacteria persists? In part because many people have distinct clinical improvement from longer-term antibiotics when their symptoms returned after an initial short course. And in part because of supporting evidence about how the Lyme bacteria acts. 

Scientific research is a more complex and nuanced way of “knowing” than some people understand. Does the evidence at hand support your theory, challenge your theory, or say nothing about it?  Those are the key question whenever you are evaluating research.  Scientific inquiry is a slow process of accumulating evidence, and correctly interpreting that evidence. Revision of theories is constant, and necessary. We are a LONG way from enough body of evidence to be definitive on this topic, so it is critically important to keep an open mind and keep designing studies that look at interesting possibilities.

And, I believe, treating people in the meantime in whatever way helps them improve.

So, much of what I have come to understand about chronic Lyme is based on a mix of studies and clinical observation – mostly that of doctors who are out there treating it all day every day. The bacteria that causes Lyme is known by the Latin name Borrelia burgdorferi, so I will refer to it as Bb for brevity. Here’s some fun facts to know about Lyme and Bb! And a few opinions….

• ·         Bb has multiple ways of disarming your immune system. One is believed to be an attack on a certain type of immune cell called a Natural Killer cell. That will definitely be the name of the next punk rock band I form. Most natural killer cells have a CD56 “label” but some have a CD57 label (CD’s are like flavors). For reasons no one understands, chronic Lyme disease is associated with low levels of the NK CD57 cells, so like everyone else with my illness, mine are very low. They are supposed to be over 60, and ideally over 100. Mine vary from 13-17, and haven't budged in 4.5 years. Natural killer cells are important in attacking virus infected cells (and tumor cells) before antibodies can be formed, and play many other immune roles as well.  Many people with chronic Lyme, including me, have latent viruses (like Epstein-Barr and Cytomegalovirus) flare up and produce lots of symptoms like fatigue and malaise. When treatment of chronic Lyme is successful, CD57 levels return to normal. Slowly. And viruses are better controlled. No one has an explanation for why CD57 cells would be suppressed unless there is living Bb in the body.
• ·         Bb can take 3 different physical forms. One is the spirochete, a corkscrew shaped bacteria like syphilis. That is the classic form, and it can move rapidly and reproduce readily in this form. Its spiral, drill-shaped form allows it bore into all types of other cells (muscle, nerve, etc.) . It causes the symptoms of early Lyme – fever and rash – and accounts for the bacteria’s wide and rapid dissemination in the body's blood and tissues. Next comes the L-form, with no cell walls. It can reproduce, though, and lives in colonies of self-protective slime with other pathogens called biofilm. These colonies protect the inner layers from threats like immune cells and antibiotics. The L-form causes most of the chronic Lyme symptoms – arthritis, neurological, etc.  In addition to living in biofilms, the cell wall deficient form can live inside cells, like brain cells. The third form is a hard round cyst – this is a dormant, non-reproductive form the bacteria takes in stressful environments. It is a way Bb has to prevent itself from being killed off because immune cells and antibiotics are minimally effective in killing it. When the cyst changes back, it forms multiple spirochetes. Like a Hydra. The cyst form does not cause symptoms itself, but the pattern of the cysts re-emerging as spirochetes leads to the relapses so common to chronic Lyme. The existence of these 3 distinct forms complicates discussions about whether there is “living” Bb in a patient after treatment. There may be few to no spirochetes, but plenty of the other forms.
• ·         Lyme disease includes infection with Bb, but in many or most cases also includes other tick-borne infections (TBIs). There are about a dozen that are known to be of concern, but this is an evolving field. Some of the most common are babesia, a blood protozoa like malaria, other bacteria like bartonella (cat scratch fever), mycoplasma (tiny bacteria with no cell wall) and erlichia, and several scary viruses. I have a nice collection of these “co-infections” myself.  Some consider “Lyme” to be a collection of TBIs that usually, but not always, includes Bb. These other pathogens can be difficult to test for and treat. Most of them need different treatments than we use for Bb, so it becomes a complex guessing game, chasing down bugs.
• ·         Biofilm is possibly the key to chronic Lyme, and numerous other chronic diseases. The most familiar form of biofilm is dental plaque – you know how it clings slimily to your teeth, and how even a vigorous program of mechanical removal may not be enough to keep it from chronically infecting your gums.  These biofilms can be found all over the body, and lots of bacteria can be in them like staph and strep. Biofilms are the curse of joint replacements gone bad – super hard to treat, usually requiring the artificial joint to be removed and replaced.  Research has shown they are very resistant to host immune response and antibiotics. Funny, that sounds like chronic Lyme! Bb (and other pathogens) has been found in biofilms that make up the neuron plaques of Alzheimers and other neuro-degenerative illnesses.  Our understanding of biofilms is in kindergarten, but I believe that understanding them better will lead to a radical change in the treatment of many chronic illnesses, some of which are considered untreatable.  The bacteria in biofilms do not cause strong antibody reponses (thus, lots of negative Lyme tests in the presence of terrible symptoms), do not respond well to antibiotics or your immune system, and can persist for a very long time. It also appears that different species of bacteria in the same patch of biofilm can swap genes, including ones for drug-resistance.  It is possible that arthritis, much heart and coronary artery disease, Alzheimers, and many other major illnesses that shorten and diminish lives are related to biofilm formation and persistence. Additionally, there is evidence that low levels of antibiotics, such as might be found in industrially-raised meat animals, will induce staph biofilm formation.

These are some of the ideas that go into supporting the theory of chronic Lyme being a persistent infection, in addition to the clinical observation that most people improve on extended, properly dosed and sequenced antibiotics.

The kicker is – most people also relapse when they go off antibiotics. This doesn’t mean the disease of chronic Lyme is non-infective, it just means that there are reservoirs of infection that are impervious to treatment. Understanding how biofilms and encysted bacteria work, in addition to the presence of other tick-borne infections that require different management, is critical to understanding why treatment of chronic Lyme is so difficult, and often fails repeatedly.

Additional food for thought:

In the mid-1800’s, Freud popularized the idea that “creeping paralysis” was a form of hysteria, caused by mental imbalance. At the same time, scientists were finding characteristic plaques on the nerve cells during autopsies of patients with these familiar symptoms, and that line of inquiry progressed parallel to the dismissal of these symptoms as being as issue of neurotic women. In the early 1900’s, men with this condition were diagnosed with multiple sclerosis, while women with the same symptoms were more often found to have hysteria. Around 1950, the idea of multiple sclerosis as a physical disease, not caused by mental health issues, became more widely accepted among doctors. As in, it took 100 years for research to finally lay to rest prejudicial ideas about the nature of MS. 

Random Seasons

I had that dream again, only it wasn’t terrifying.   My leg muscles were so weak I could barely walk. This time, I was trying to walk up a hill on a street to do something with friends and my legs were so weak and trembling I collapsed to rest every few steps. I kept pushing as hard as I could because I was embarrassed and I wanted to participate. I imagined my friends remembering the old me, who would have jogged spiritedly up the hill, offering a small child a ride on my back. Now the small child was bored and complaining that I was going to make us late.

I had dreams like this when I was first sick, but the leg weakness – which sometimes wouldn’t allow me to even stand  in those dreams – would put me in danger. There would be a threat, something I needed to run from or stand and fight. I was helpless, and the fatigue was like a crushing weight that pinned me and made me utterly useless. I remember many dreams of struggling to use my less weak arms to pull me upright on my spaghetti-like legs so I had a chance, but it never worked.

So – improvement, eh? I’ve gone from being in mortal danger to being a frustrating embarrassment. There’s a lot of change to reflect on in the 4 years and 5 months since I first was laid low. I am clearly less sick, happier, more functional. I‘ve structured a decent life around working less, resting at least a few hours a day, sleeping 10 hours at night, avoiding loud overwhelming places,  exercising little to none, and planning very few evening activities.  My friends and family are virtually 100% accepting and kind about my limitations, and I am at maybe 80% acceptance. The embarrassment I felt in the dream was all mine, no one in my life seems to express frequent frustration or disappointment about me, which is a tremendous gift.

Maybe the dream came because I’ve had a week of lousy sleep which nearly always corresponds with an increase in symptoms. For about a month prior, I was feeling encouragingly well, even able to sustain longer stretches of exercise and more evening social and work events. Some days I would wake up dizzy -  always a warning sign in the past – but my symptoms would just melt away as the day went on instead of reaching a crescendo mid-day, sending me to the couch. It was starting to feel like spring after a long winter.

It is more understandable when I tell people – my sleep has been crappy so I’m not feeling well – instead of the more accurate version – my disease has been jacking up my nervous system, disrupting my sleep and causing more fatigue, dizziness, sensitivity to light, poor concentration, poor stamina, etc.  Loss of sleep is both a symptom of my illness having a relapse and a contributing factor to my other symptoms. And now, I just want to hibernate, like a bear. 

That was a short spring.