Wednesday, February 29, 2012

12 A Personal Note From A Fellow Lyme Patient

I was going to work on a page about the Lyme disease controversy which incorporated some of the discussion about Embers et al Rhesus macaque study on the Lyme Policy Wonk blog or post something about how Viral Genetics' chronic Lyme disease treatment is supposed to work.

But I've decided for now to set that aside because now I have something to say about something more personal.

Recently, someone mentioned me online in a Lyme disease support group forum and stated that my ability to knock out 1,000 word rebuttals and look up all this research made other people with Lyme disease look bad.

I took exception to that statement, and disagreed with it.

It wasn't all that long ago that I wasn't even able to write and do research, and it wasn't until I had been treated for Babesia by my LLMD that I began to see a difference in how quickly my mind worked.

When this change took place, I wanted to take advantage of it.

I felt compelled to write and do research because I finally could do so again and I was afraid I would relapse again any day. I feared I would return to some muddy primordial brain soup that couldn't string other people's sentences together and would put down a book after two minutes of frustrated repetition that looked like reading but really wasn't.

Relapse when? Who knows. I'm still afraid of my old symptoms returning and losing ground. Relapse happened to Pamela Weintraub. Relapse happened to others. And I've already relapsed once from about 85% of my original baseline.

I was so close. So, so close to feeling normal again. And then I lost what I had gained.

I'm not 100% now and I'm not at 85% again - however, I'm still better off than I was over a year ago.

This writing I do here and other places online? It isn't a game to me. At times it has been a genuine challenge. I've done it while having headaches and muscle pain and joint swelling. I've done it in the middle of episodes of fatigue and to avoid standing up due to vertigo. I've done it at 3 am. I've done it after waking up after being crashed out for hours because I'd been in the ER all night.

It's true that I do a lot of research. And it's not hard to do because it's what I used to do for a living. To some degree, it's force of habit and was easy to return to once I was able to understand what I read again. And I'm trying to reeducate myself and learn new things so that I have a better understanding of what I write and share with you.

But just because I do this does not mean I am capable of returning to my old job. Even if I can read and write, my health is so unstable that employment has not been possible during this time. Employment requires stability.

My brain - while functioning in some ways - is not fully running on all cylinders in others. It's just not obvious how it isn't to someone who isn't living life inside my skin every day.

Care for the rest of me outside my brain can be time consuming.  Case in point: I just looked on my calendar for February to see how many appointments I had. If you add it all up, I've had 5 appointments for different health problems - either to follow up on an already existing condition or to check up on a new one.

Many if not most of my friends without Lyme disease haven't seen a doctor within the past year.

That used to be me. Not any more.

When it comes to blogging online, I think it's a great thing: In some small way, this has been my slice of "normal". No one could see how impaired I have been and how bad things can be.

Perversely, having my capability for research and writing online being pointed out by a near-total stranger is satisfying: It means that I pass as being more normal than I truly am to someone in a world where the dominant paradigm of normal = healthy - even when I'm part of a community where it's normal to not be healthy and one faces challenges daily. But it can be demoralizing and confusing to read the accusation attached to it that my doing my best is somehow reflecting poorly on others.

I'm not doing research and writing about Lyme disease to make other patients look bad. I've been doing it because it's one of the few things I've been capable of doing from my sofa during the past year. 

I've been doing it because I want to learn as much as I can about this disease and topics related to it.

I've been doing it because maybe what I learn and share with others can help them, somehow, in some small way.

I've been doing it to educate people about Lyme disease and other tickborne illnesses.

I've also done it because it keeps me saner than I otherwise might be after all I have been through. It distracts me. It gives me a goal to live for other than to drag myself through another appointment, another blood draw, and another tedious stack of paperwork.

I've been trying to do something positive with the situation I've been placed in against my will, and implied assumptions about my health and reasons for writing long rebuttals or doing research are about as useful to hear as hearing a statement such as "those with chronic Lyme disease only suffer from "the aches and pains of daily living" is useful to hear: It isn't.

And when it boils down to it, a remark about my being a bad example for knocking out long posts online doesn't even make sense to anyone when so many other patients - including ones with other medical conditions which are disabling - spend at least as much time reading, writing, and posting online as I do.

If I've actually improved - if I've actually been doing better than I used to be doing - that is a good thing. When anyone else shares the news that they are doing better, I tell them I'm happy for them. I don't tell them they set a bad example. That doesn't make sense.

A lot of us struggling with disabilities are in the same boat. Former lives are broken and may not come back together the same way again. It sucks, all the way around.

I don't know what the future holds.

In the meantime, though, I am going to make good use of this time to research and write if I can, and do the best I can do at what I'm capable of doing.

How can anyone salvage something out of this situation? You do the best you can.

I encourage you to do likewise. Life is short.


  1. CO,

    I was too angry when I first read those insensitive and unfounded remarks by a fellow Lyme disease patient to even comment on them.

    In many ways, you have made this journey more bearable for me, and I cannot thank you enough for all that you do.

    I clearly recall the many months I was incapable of reading or even watching television. Even though that happened years ago, the fear of losing that ability again will probably stay with me for the rest of my life. It must have been very difficult for you to regain 85% of your health and then lose it again. No wonder you are concerned about another possible relapse.

    Like you, I do my utmost to exercise my brain and also do my best to focus on what I'm able to do -- as opposed to the things I'm physically not up to doing yet. Just keeping track of medical appointments was extremely challenging for me at one time, and I'm so thankful that my calendar is no longer quite so full with those types of entries.

    It's truly unfortunate that a fellow Lyme disease patient judged you unfairly and felt the need to criticize you without any knowledge about your personal circumstances. I for one appreciate all the research you do and all of your blog entries and posts on LNE.

    I continue to wish only the best for you and others who struggle to regain their health.

    Rita A

  2. Rita,

    I was angry, too. Still am somewhat. It's bad enough that doctors try to diagnose us and tell us whether we're sick or not because we have persisting symptoms - it's worse when another patient questions us.

    Now that I've slept on it, in retrospect I don't think the comment was intended to personally slight me - even if it did anger me. I think it was part of a litany of criticisms that the authors were foisting at Lymenet Europe in general to discredit the site and everyone on it - except "some good people" including Dr. MacDonald. Apparently it's fine for "the good people" to be there, but everyone else who is a Lyme patient on another forum should steer clear. (In what way does this make sense?)

    This is old news - a number of Lyme patients have been given negative press about Lymenet Europe and advised to steer clear of it because it's a place where some people make a negative comment about an LLMD here and there. While that does happen, I wouldn't avoid the entire site - it's a great place to read about and discuss science, which is a big reason why I go there and probably why Dr. MacDonald is there. I've been enjoying recent exchanges with him, including ones about OspA and neurological infections.

    But I digress. Regardless of intent, I did get angry about that comment. I have been through hell with Lyme disease and Babesia, and I don't appreciate another patient trying to characterize my condition. They don't know the full story.

  3. Rita said,

    "I clearly recall the many months I was incapable of reading or even watching television. Even though that happened years ago, the fear of losing that ability again will probably stay with me for the rest of my life. It must have been very difficult for you to regain 85% of your health and then lose it again. No wonder you are concerned about another possible relapse."

    I remember that time, too. I went through it shortly after I was bitten and it did seem to be several months in a very painful haze. I did get on antibiotics consistently after a couple months after a few failed attempts and doctors who just didn't know an EM rash when they saw one - but by then, the infection had already disseminated and I was deeply affected.

    Yes, I did get up to 85% of my baseline within two years of initiating antibiotic treatment. I went back to work for a while, and unfortunately, began to decline while on the job and was not in a position to tell my employer what was happening. My performance suffered due to my health. I had to leave.

    So yes, I had a genuine near-recovery and then I relapsed. Slowly have gotten better again, but I wonder how many times I will end up going through this? Pamela Weintraub went through a few cycles of getting very symptomatic and then taking antibiotics when symptoms hit what she viewed as the lowest point. I may be going through a similar process. But she eventually got well and has been busy.

    I am hoping someday I get to that point. I may not be able to do the kind of job I did before all this. In fact, I'm certain that would be a bad first step for me and I need to do something else. It's not the research aspect of it - that was fine. It was the long hours without anywhere to lie down.

    Self-employment might be the best option for me if I'm dealing with fatigue and need to rest more. I have more flexibility with my hours that way.

  4. Thanks for such an honest heart felt post Camp.

    I was sorry to read the remarks about you but not surprised, there are a small group of Lyme sufferers who can be very destructive and critical against the efforts others make, whilst we can't all agree we do need to strive to be polite about our disagreements and not make personal attacks.

    I rather like your sketch at the start of this post although I think I would change the word 'Realise' to 'think'

    A big thank you for all your writing which I have found of interest.

  5. Dear CampOther,

    I can't tell you how GRATEFUL I am, that you are doing this work. The information you evaluate, synthesize and comment on is very helpful to me, as a Lyme patient. I also often have brain fog and constant memory issues - so I appreciate the struggle you have made to exercise your brain - it's really a form of physical therapy (healing).

    Your voice is one of the sanest and most balanced perspectives on the web for Lyme information - please don't stop!


  6. Camp, your site is by far the most balanced, thought provoking, well researched of them all! Don't be bullied. You are exeptional. Sadly there will always be haters. *uck em.

  7. To everyone who responded so far, thank you for your support. Your words encourage me to continue writing this blog despite the occasional vocal detractor.

    Quick note to Joanne: The image used is not mine - it is something I found on the internet. I was thinking of the phase I've often heard from many Lyme patients: You don't "get it" until you "get it" - meaning that you don't truly understand Lyme disease until you've contracted it and suffer with all the symptoms. Talking about it is one thing, and having it is another.

    In this case, when I think of patients who should "get it" criticizing other patients and suggesting how sick they are or aren't - I think that there is something that they did not "get" even if they "got it".

  8. This.

    I'm with Rita -- my own experience with Lyme disease has been made more bearable by your blog.

    I think we all do what we can to stay in life, in whatever way that's possible. I became a moderator for an online group of chronically ill knitters and crocheters. The group has grown to over 800 members, and four of us now share the mod duties. Many different types of illness are represented, including several other people with Lyme disease. I have done my best to use my biology training and my training as an educator to the benefit of the group. I know what you mean when you say that it's not easy; Some days it's all I can do to keep up with the posts, and other days I can't even do that, but that's why there are four of us -- to cover each other when we are too sick to manage. I've taken multiple days to write out especially detailed posts because I am now very easily distracted and lose large blocks of time. It gives me a sense of purpose and personal satisfaction, though.

    Keep on keepin' on, Camp. What you do matters.

  9. I am grateful for what you are able to do and wish I were well enough to do likewise. I admit I am in awe of people like you are able to read all these articles and then write this blog when I can barely sit long enough at the computer to try and read it much less comprehend it all. But we are all at different places along this path on our Lyme journey. I'm glad you mentioned you were once where I am now.

    I didn't read the offending comment mentioned but I don't think you make me look bad. Secretly, I feel inadequate a lot of the time but I don't blame anyone else I blame this wretched disease that has tried to rob me of my life. I'm delighted you are functioning well enough to enlighten the rest of us. So thank you from the bottom of my heart and please keep it up.

  10. I was bitten in July this year, had treatment and still have symptoms my doctor doesn't understand or accept.

    I have just found your log and very grateful for doing so. It helps me realise I'm not alone in dealing with the strange feelings, change of personality, emotions, random aches, pains, persistent headaches, loss of memory, focus, etc. that are difficult for me to explain and my family to comprehend.

    Keep doing what you do and thank you.

  11. RJ,

    Thank you for your stopping by my blog and leaving a comment.

    I'm sorry you have been bitten and continue to have symptoms since treatment.

    I don't know what your symptoms are or their severity, and this early in the game, if there is any way to get a second opinion from a Lyme literate doctor, I'd do so.

    In your shoes, I recommend getting a new western blot which shows all the bands - along with aneurophysiological examination to see if you have signs of neuroborreliosis. These could help determine if you need retreatment or to move to more intense treatment.

    You would need to be retreated or treated with IV antibiotics if your infection has disseminated into your central nervous system (CNS) or you've developed Lyme arthritis... Unfortunately, some family doctors do not know where to draw the line between giving further treatment or giving more intense treatment even within IDSA's guidelines for acute disease, and this can lead to more serious problems down the road.

    Early treatment is of utmost importance in Lyme disease because that's when it is the most effective. If you have any fatigue ,chronic headaches, stiff neck, cognitive and neurological symptoms, stabbing pain, pain that anti-inflammatory pain medicine does not seem to touch - symptoms like those - those are a sign of needing further evaluation and treatment .It sounds like you do, so I would not leave things as they are.

    You are most definitely not alone. There are a number of patients in your position who have had a similar experience. I'm sorry that you have joined our club, and I would do what I could to help you get out, so my advice to you is to seek further evaluation for disseminated late stage Lyme disease, before it leads to even more problems you don't need.

    Let me know what you decide to do and how it goes. Take care, RJ.

  12. CO,
    I had no idea there were so many parallels. The neuro sxs I can completely, utterly relate to, as well as the 100%>85% >?%. You're not the only one holding middle ground. Our paths may cross, and we'll both be right smack there.


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