21 Rant: Why Dealing With Lyme Disease Drives Me Crazy. (Part 2)

Note: The content that follows is part two of a personal rant and is atypical of most content as well as context covered by this blog.

This is part two of a two part rant. Part one can be found here: http://campother.blogspot.com/2012/01/rant-why-dealing-with-lyme-disease.html

To continue where I left off, and to share other reasons as to why dealing with Lyme Disease drives me crazy from a patient's perspective:

7) Because the organizations and institutions which have the most influence on treatment and research for my condition are engaged in a political battle of the wills where if "you ain't with us, you're against us". It's a position where being in the middle is difficult at best.

Most patients with persisting late stage untreated Lyme disease and those with post treatment Lyme disease have voted to stick with ILADs doctors and other non-ILADS LLMDs for treatment, and support the organizations and advocates which support ILADS and other LLMDs. They think that a chronic infection is the cause of patients' persisting symptoms.

Most chronic Lyme disease patients and advocates view the IDSA Lyme disease guidelines group as being highly restrictive in terms of treatment of their disease, and not only that - think that the IDSA Lyme disease guidelines group does not care about patients and only cares about profit. The IDSA guidelines group thinks that some autoimmune condition is the cause of patients' persisting symptoms.

One segment of the chronic Lyme disease patient population has grown a general distrust of scientific researchers and allopathic medicine in general. This growing group of patients voices its dissent against not only the IDSA - but any group which may be viewed as profiting off of those with chronic illness in some way: The FDA, pharmaceutical companies, government and non-government researchers with patent rights to their technology, grad and post doc microbiology students, and then some.

Watching all this go by and unfold,  the position I'm in is that because I am not interested in completely aligning myself with any one of these groups in this battle, that I have been viewed by some patients as not being loyal enough to the chronic Lyme cause and not loyal enough to supporting alternative medicine. And for some small portion of my readers,  I'm not loyal enough to the hypotheses about chronic Lyme disease which the IDSA espouses, either, because I have this seemingly odd idea that some people may need more than the standard amount of antibiotics set out in their guidelines.

Because of this, sometimes I have not been able to get the support and understanding I need as a patient from other patients going through the same thing - presumably because they view me as fence sitting and it makes them feel distinctly uncomfortable. Heck, last year I was even banned from participating on one Lyme patient support group - so I have a sign that at least to some people, I'm not welcome.

But I'm not here to make people feel uncomfortable. It's not what I want to do, though I acknowledge that some of what I write may bring up uncomfortable feelings. What I do want to do is figure out what the truth is in this area full of conflict and get a greater sense of it. Move past any ideological conflict and look at the science. This is why I do research and try to avoid what all the pundits are saying - whether they are pro or against something - whatever it is.

I think that what causes persisting symptoms in patients is not a one answer deal, after all the research I've read. It's not that simple. And I wish that all of those involved in the study and treatment of Lyme disease would come forward and say that, and admit that they do not know what the best treatment is for everyone.

We need a different starting point than where we've been gridlocked over the treatment for the past two generations of Lyme disease patients. Why can't more people consider that those with persisting symptoms may have them both due to persisting infection as well as changes to the immune system? Or that the cause may differ in different patients? Do more research into how different strains of Bb and genetic backgrounds (e.g. HLA-DRs) of patients influence outcomes?

Two of the most supportive and outspoken figures in the Lyme disease community see the need for middle ground as I do - Pam Weintraub and Dr. Brian Fallon. I think we need more middle ground to be covered if we're going to make any progress on understanding chronic Lyme disease and getting better treatment for it. More research is really the key. More fighting over cause is not.

8) Because parts of the mainstream media continue to sensationalize this taking of sides and fails to examine and share all the scientific evidence available (and areas where evidence is also lacking on either side) about my condition, it contributes to the growing problem of scientific illiteracy in this country. It also contributes to dismissive attitudes towards patients with my condition.

I don't know how to say it enough or loudly enough to be heard: The Chicago Tribune's article, "Chronic Lyme: A dubious diagnosis" is exactly the kind of journalism that fails to address the issue of chronic Lyme disease from a scientific perspective.

I spent a fair chunk of my time deconstructing the article and pointing out how it was about two doctors' disciplinary records and flawed alternative treatments for chronic Lyme disease - rather than about whether or not Lyme disease could actually be a chronic infection. That issue is never really discussed throughout the entire article when one would think that based on the title that would be exactly what it would have been about.

Whether one believes chronic Lyme disease/post Lyme disease syndrome is caused by a chronic infection or not should not affect the fact that patients are suffering from a condition which is not "all in their heads".  Articles like the above characterize doctors and patients in the worst light without getting the full picture or an accurate one, while simultaneously failing to examine, state, and challenge the range of research on the disease itself. Anyone reading that article would walk away not having learned more about Lyme disease in general - let alone any reason why some people may think it can be a persistent infection and other people think it cannot.

This article is not the only article or the first article to become a meal to feed the trolls. There have been others. And because so many of these sensationalist articles have been printed, they have made it more difficult for the public to take my condition seriously. A condition which - as you may recall - an academic researcher said that at its worst was equal in severity of symptoms and lack of functionality in patients with congestive heart failure.

9) Because having my condition has been life changing and entirely game changing for me. All the plans I had before I got ill have been completely trashed. Many opportunities I would have said "yes" to I ended up having to turn down. And as such, for a number of these plans and opportunities - there are no second chances.

This is the same story that many people could say about other conditions, I know: Car accidents leave people with injuries and disabilities that can affect them for the rest of their lives. Cancer and many chronic conditions can affect people for the rest of their lives, too. Someone with my condition shares this much in common with many other people. And we might improve; we might not. No one knows.

That said, I can not easily describe just how much I have lost to my condition and complications related to it. Lost income and the loss of my career and the ability to work, lost opportunities to travel and go hiking in the mountains, lost time spent with friends and family because of illness preventing me from participating in events, lost positive life changes such as buying my own home and filling it with the things I want... all of these things and more have happened to me and many other people.

But these are the big things. Sometimes even the small things can be a noticeable and painful loss. Not being able to wash my own back put me at an all time low when it happened.

10) Because just living with my condition and all the symptoms it causes is crazymaking, and few people really understand it.  They don't "get it". Seeing someone with a broken leg makes it clear to someone else that something is wrong and what their limitations are - seeing someone like me makes it clear as mud what is wrong and what my limitations are. And things change from day to day.

This is a more difficult thing to explain, and perhaps some of it can be better articulated by web sites about invisible illnesses. My own attempt at it is to say imagine that you have a splitting headache almost constantly, have trouble taking full breaths day and night, your muscles ache - and ache worse with any repetitive motion, even after a short period of time, and your joints ache all over your body. And no one can see the pain you are in. At most, they can see you are moving more slowly than they would be. But other than that - you appear normal to them.

And tomorrow, those symptoms might change. But still be limiting and make you dysfunctional in different ways.

This is a small snapshot of how life has been for me. Sometimes it's better, sometimes it's worse. But if it weren't for walking around with a cane or borrowing a scooter to get around, a lot of people may not see that anything is wrong with me. Someone with a broken leg has the benefit of an obvious visual sign they are messed up. I don't. And because of this, some people have either forgotten I'm not well when they next see me - or worse, don't believe I am unwell in the first place.

And if I am at home in bed? That's a truly invisible illness - out of sight, out of mind.

That is its own problem: lack of external confirmation and validation of my condition.

Another problem related to this is my not knowing what to expect from my body and to expect from myself from one day to the next - and sometimes one moment to the next.

I may be able drive to the doctor's office, the hardware store and grocery store and come back home and still have the strength and energy to do something else the same day. I may not, and have trouble getting out of bed at all. On those days - if I get back and forth to the bathroom - that's my travel for the day.

Attached to that is a host of problems around how difficult it is to make plans and keep them, and the economic, social, and other costs that come with poor follow-through.

I feel alienated about living in my own body. It doesn't cooperate with what I want and need to do. And at times, the pain, fatigue, and isolation are hard to bear. I hurt. I've lost sleep on many nights because pain kept me awake. I've had to struggle through that pain alone, and wished there was someone to keep me company through it - yet at the same time, did not want to subject anyone to my misery.

Sometimes I don't even want company - and the funny thing is, during those times I don't like my own company, either. I become a total ass. I find my own ruminations while ill to be counterproductive and leading down the path to a dark and deep sense of hopelessness, one where there is no point in making plans for the future because I'm likely not able to keep them anyway. Serious depression here.

And even when I reach a stretch of acceptance of my condition and its limitations (and there is acceptance, but it's part of an ongoing process where it is revisited and not a destination where I can park),  living with it is still so damn HARD...

When I am around other people, I feel like the ghost at the table. I am there, but mentally and physically not solid. I can affect things, but only indirectly and weakly compared to one's normal human form. I can hear people and engage in conversation with them, but from my own perspective it always seems as if there is a thick layer of atmosphere I have to communicate through where speaking requires extra force to push the words out of my mouth and listening is like trying to decipher the words of people talking underwater. All of this communication takes extra effort I never needed to make before I got sick. I never would have even imagined one could get sick in such a way that normal social interaction would be draining. This is what chronic fatigue and brain fog are like. I didn't know it until I got it.

This is hard on an extrovert, and over time I've had to become more and more introverted in order to cope and adapt to my condition. I "don't have any spoons" to be the energetic and engaging person I used to be. I don't have it in me. Only a few people close to me are lucky enough to see a glimmer of my former self for brief moments of time.

In a very real sense, my condition has robbed me of being me. Which is one of the highest insults I can imagine any condition causing to anyone. I've been forced to become someone I do not want to be because of my condition. How sucky is that? It's pretty sucky.

So this is the end of part 2 of why dealing with Lyme disease drives me crazy. Maybe there will be a part 3 sometime in the future - I don't know. For now, I'll leave it at this.

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33 Having a Dialog About Censorship

This has been a crazy week here at Camp Other.

I was originally going to post my usual Friday Four science column, but it may just slide to the Saturday Six or something like that.

I have something else to say now, and I'll post more science later.

This post isn't about being banned from a forum, if you were expecting to hear more about that... Yes, I was puzzled why I got banned, and so were others. It happened, I wrote about it, and then I was going to move on.

However, I can't completely move on without saying a few things about the comments I've been receiving.

Right now, what I'm hearing and seeing is that people have been asked on the forum to not even mention the name, "Camp Other".

Not to speak about it, and any attempts to discuss it will lead to the thread being closed.  A request was made to PM the moderators about anything having to do with Camp Other instead.

And I'm also getting comments and reports about other people who think they've been censored, and think censorship on various groups has gotten out of hand.

Why I'm being censored now, I don't know - I consider this the hallmark of absurdity.

First banned, now censored?

This is a blog about science and social issues surrounding Lyme disease and other tickborne infections.

Mentioning this blog anywhere really shouldn't be that controversial... I don't think anything I've said anywhere online is that particularly controversial, other than occasionally I mention the somewhat-controversial-to-mainstream-medicine-IDSA-guidelines idea that Lyme disease might be a persistent, chronic infection.

But I want to say something about the people left behind, because what is happening there is controversial:

People shouldn't have to be in fear of what they say getting taken out of context, or be afraid to ask or be asked a challenging question - or be afraid, perhaps, of not saying something quite the right way using the right words.

What we need to do when people disagree, or challenge assumptions, or ask for more information is to simply respond to that: Have a dialog. Talk. Discuss.

A lot of misunderstandings that people have can be cleared up when they have  a meta-discussion - which is a discussion about how we discuss things and why we discuss things the way we do.

Shutting people down, kicking them out, closing the door, and putting earplugs on doesn't make them go away. They're still out there, saying something to someone - maybe even about you - only now you can't hear them.

Even if you can't hear them and they are far away, chances are the ideas they hold dear and the values they possess may be found in the next person who comes in the door, a stranger who greets you, or a random person who shows up on an online forum.

And then you will have to deal with those same ideas, same values, and other things you may disagree with or be challenged by.

People will also have an effect on those they leave behind whenever they go away - there are always ripples in their absence, whether they left because they were banned, left of their own free will, left because their computer died, left due to poor health, or any of a number of reasons.

Because when it comes to being amongst other patients - we all ultimately share in the same suffering and want the same things. And we notice that absence.

What makes a support group what it is is the patients, more than anyone else. And the needs of patients are what is paramount: building community, research, safety, understanding, proper diagnosis and treatment, and support. And just knowing that we're reaching out to others who are going through - or have gone through - the same things we have.

Maybe how each of us express our needs for those things differs, and maybe how we hope to achieve it differs - but the bottom line is that through dialog we can discuss those differences rather than deny them, or push them away.

Censorship is not the way to go. More communication is, in my opinion. Even if it's somewhat messy and misunderstandings take place. That's what compassion and forgiveness are for - allowing mistakes and accepting apologies.

If someone is truly being egregious in their behavior on a forum, that's one thing - and I think one has to draw the line somewhere. Somewhere reasonable.

I may have only been on this one forum for a few months, but that's enough time to see how things went - and it's particularly telling how things went after I've been gone. When people voluntarily leave due to censorship and people try to leave because they want out, that's saying something about the atmosphere they're in.

I don't like it.

I want anyone who posts comments to my blog to know that I will do my best not to censor any of you and let you speak your mind. Obviously you have to follow Blogger's terms of service - I have no control over those - and I have a rule that when you're discussing personal physicians, that you do not use their name or initial (use "my doctor" or  "a friend's doctor"), unless it's in relationship to something they said in the media or a published paper.

That's it. I really don't have any other rules, other than don't spam my blog or phish for information.

I think the time is ripe for more meta-discussions that I don't see anyone having, and those are the discussions about discussions which get shut down before they even start.

My main question is: Have you been censored and what can we do about censorship on patient forums?

If you are a Lyme disease patient and you want to discuss being censored or being banned online yourself, please leave a comment. You can still be Anonymous or use a username - either way,  I'll post your comment after it clears my spam filter.

If you are a Lyme disease patient and you want to bring up the discussion of censorship in general - especially in what changes you'd like to see in the way discussions online are handled - please drop me a comment.

Let's open dialog up, and see what happens.

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40 First Banned Access

Today when trying to log in to a forum, I received immediate indication that I could not access that forum of which I'd been a member.

It's only been a few short months since I joined.

I have received no PM, no warning email, and no indication of what my specific violation was that led to being banned.

This is all I have to show for it - two screenshots (click to zoom for closer look):

and

Since I'm not entirely sure why I was, in fact, banned, I have to look back and play twenty questions with myself...

There are only two things I can think of right now that might have led to me getting banned:

1) I pointed out, openly, on another forum that posters need to do a better job of producing evidence to support their claims when they are in the domain of conspiracy theories,

and

2) .....

Actually, #1 is the only thing I can think of that could have gotten me banned.

I'm sorry, if that is in fact what happened - I have no way of truly knowing at this point because as I've said - I didn't receive any warning or take-down notice.

On one hand, I am disappointed because I thought what I had to say was important and I was learning some new things while there. I also have been genuinely concerned that those who discuss conspiracy theories so much on support groups do one of two things:

Reduce the credibility of all patients who are already in the challenging position of having to support the existence of Chronic Lyme Disease,

and/or

Create a distraction that serves the purpose of taking people's minds off the issue of solving the Chronic Lyme Disease puzzle itself, by dragging in all these additional topics and potential causes for alarm (either founded or unfounded, depending on the case) about our health, government, scientists, and business.

I was fine discussing at length the role of pharmaceutical companies and lack of ethics in clinical trials without much controversy... it is only when someone got onto the issue of chemtrails in our skies that I began wavering in my ability to respond rationally.

There is - as it's often said - a time and place for everything. And I can listen to someone else's theory about something - heck nearly anything, really - especially if they supply sound evidence from verifiable sources. But they did not, and I pointed this out to them, that and that they would appear conspiratorial to their detractors and the media - only to be told they didn't care.

And well, I very much do care what is thought of Lyme patients as a whole, and so I pointed this out on that very thread and elsewhere. And I got banned.

So that is probably what happened. That's my best guess. Which is kinda sad, because I found this cool three-part series from the Discovery Channel about the issue of chemtrails I was going to post links to in that thread and asked if anyone had seen them, at least to provide evidence on the level of NASA-style research done on chemtrails at Kettering University:

But you know what?  Here's the other hand...

On the other hand, I'm somewhat relieved to be banned. Yes, relieved. Do you know why?

Because every few minutes I was spending copious amounts of time looking up other people's site links about topics completely unrelated to Borrelia and microbiology research - their links, and then other documentation to both support and refute the argument at hand -  and it was beginning to wear me out with the sheer volume of material made available for me to assess.

So now I am freed from feeling compelled to make those assessments, and also free from asking for more solid evidence - though that is exactly what I wanted from them.  More than to dismiss it all, because I rather people find good evidence for me to support their theories about chemtrails or something else first - before someone from the media tries to ask them not only about their pet theories about chemtrails but also about topics more germane to the discussion, like persistence in Lyme disease.

In the end, I just wish it didn't come down to this. There were other conversations I was having with other members there I quite wanted to continue which were right up my alley, about seronegativity in testing and potential forms of transmission of Borrelia in human hosts. This is what I've been researching and continue to do research on, and liked conversing with anyone else who was reading it. I was also helping one new patient with questions - and helping another person get started with creating their own blog on Blogger - and now, I cannot go back there and help them.

I'm very sorry. If you are on that forum and would like to continue chatting with me here, please post a comment and I will read it - at your request I can keep it screened as well, as I screen all comments. You can also email me at CampOther at gmail dot com.

If anyone remains on that forum, and knows which one it is - could you please inform others of my banning? I'd greatly appreciate it, rather than have some members who were concerned about me think something else happened to me. Thanks.

Now that I'm no longer a member there, expect to see more in-depth research and commentary on this blog (provided I'm well enough to keep going at a healthy clip). I will continue to post commentary, research, patent reports, resources, and articles to this site as I can, including the regular Friday Four.

Tune in!

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