Thursday, February 2, 2012

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.


21 comments:

  1. CO,

    I am truly sorry that you have struggled so much with this life-altering illness. It really is difficult for those who haven't experienced the worst of Lyme disease to understand just how awful it can be -- for all the reasons you have stated (and some you haven't).

    Resisting the urge to align myself with either ILADS or the IDSA has also left me in an increasingly awkward, apparently fence-sitting position, and it hasn't made me very popular either. Sticking to our convictions by reserving judgment and being true to ourselves may come at a price, but at least we haven't given up our ability to think for ourselves. Without getting into personal details, it sometimes feels like it's all I've got left.

    From what I've read, you are consistently kind and supportive of others in the Lyme disease community -- even when others don't always reciprocate. I often hope that you are as considerate of yourself, but you've provided a few hints in this rant that it may not always be possible. Depression tends to make us dislike ourselves, while also avoiding others -- partly because we want to spare them our suffering and/or negativity.

    I think it's Pamela Weintraub who referred to Lyme disease as a unique and lonely journey. She got that (and plenty more) absolutely right. By the way, I include you in the same group as Pam Weintraub and Brian Fallon as far as being level-headed, open-minded and sincere in your efforts to find a middle ground for the sake of all Lyme disease patients.

    Wishing you all the best,

    Rita

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    1. Rita,

      Thanks for your comment. Writing this kind of post is not what I usually do. It's very personal, and personal is one thing I have been reluctant to write about for a few reasons. One is that it isn't easy for me to write about personal experience - writing about science is easier because it is a "face value" kind of thing and the language to describe it is easier to come by for me. Another is that because it is personal, my own language to describe phenomena other people experience may be different - even if we're having similar experiences. I try to generalize, but writing about feeling like a ghost at the table is my struggle to put something subjective into words that I'm not sure others will "get".

      "I am truly sorry that you have struggled so much with this life-altering illness. It really is difficult for those who haven't experienced the worst of Lyme disease to understand just how awful it can be -- for all the reasons you have stated (and some you haven't)."

      Thanks. I'm sorry, too. People have no idea what they have been missing out on if they didn't know what I was like before the shit hit the fan, healthwise. I'm trying to get some of my old self back, but much of who I have been throughout my life is not sustainable with the fatigue and loss of strength I've had. Baby steps, I suppose.

      I'm curious: What reasons haven't I stated that you think I could have?

      "Resisting the urge to align myself with either ILADS or the IDSA has also left me in an increasingly awkward, apparently fence-sitting position, and it hasn't made me very popular either. Sticking to our convictions by reserving judgment and being true to ourselves may come at a price, but at least we haven't given up our ability to think for ourselves. Without getting into personal details, it sometimes feels like it's all I've got left."

      I'm sorry you're in the same boat. And I share a similar sentiment, in that not giving up my ability to think for myself sometimes feels like it is all I've got left.

      One thing I wanted to mention in my post somehow (but I thought it would have muddied the original message too much) was that even within the Lyme disease patient community, there are divisions - and not just the allopathic/alternative groups that developed organically. There are certain patients and advocates who argue with each other about the importance of pursuing one path over another - politically, socially, and medically. There are power struggles and dynamics within support groups, both in person and offline. And there are cliques and groups which are closed to others which have their own agendas.

      After observing this and hearing from others about it, I am really tired of this state of affairs. Fracturing the patient base this way doesn't help anyone, and I think if patients could all find one singular goal to agree on (optimally, in my opinion, it would be a push for more specific research projects) and push for that, perhaps everyone would end up further ahead.

      (more)

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    2. (Rita - more - cont'd)

      "From what I've read, you are consistently kind and supportive of others in the Lyme disease community -- even when others don't always reciprocate. I often hope that you are as considerate of yourself, but you've provided a few hints in this rant that it may not always be possible. Depression tends to make us dislike ourselves, while also avoiding others -- partly because we want to spare them our suffering and/or negativity."

      I try to be supportive and just let it go if other's don't reciprocate. I don't know if I come across as a SNAG or Counselor Troi from Star Trek: Next Gen sometimes, but I try to put myself in someone else's shoes and try to respond in a way I'd want to be responded to if it were me. Which isn't that difficult when so many of us have suffered from the same or similar problems over time, really. We're all in the same boat.

      Regarding myself, I am hard on myself sometimes. Not always - as I've said there are stretches where I find acceptance of my situation and myself while in it. But this is a moving target and I am never fully accepting all the time.

      I don't dislike myself so much as I am frustrated with limitations and grieve losses. And I have avoided others at times not just because I'm depressed, but because I don't want to keep someone else up at night just because I'm in pain. I try to manage it the best I can on my own.

      One of the cold hard facts of my situation is that after a number of years, I have been hit hard by the realization that there is a lot I end up dealing with on my own that had I had another condition, this would not have happened.

      Even the doctors that so many patients in my situation turn to are too busy and overworked to support patients in the ways they need and could use - such as on-call answering services, onsite compounding pharmacies, antibiotic allergy monitoring appointments, referrals to other specialists who understand Lyme/coinfections from different angles, and emergency room visits and/or check-ins. I've heard many other patients wish for such services from their doctors - and these are the doctors who are already helping where others would not step up to the plate.

      Anyway, one would think that after several years of being chronically ill that I would have completely accepted my situation and condition. But I haven't, and the fact that the condition itself is NOT stable has alternately led me down paths of hope and paths of despair, depending on what day you talk to me.

      "I think it's Pamela Weintraub who referred to Lyme disease as a unique and lonely journey. She got that (and plenty more) absolutely right. By the way, I include you in the same group as Pam Weintraub and Brian Fallon as far as being level-headed, open-minded and sincere in your efforts to find a middle ground for the sake of all Lyme disease patients."

      Pam Weintraub's IOM speech inspired me. The seeds were already there, because I already wondered about all the conflict and controversy before I heard her speech - but really, she was quite articulate about the fact that there is a lot of polarization in the Lyme community and that she could see a clear path that cut through the controversy in an effort to find the truth. I couldn't let that go. Fallon, similarly, said a few things in various interviews and on his web site that I respected.

      We need to find more people in this middle position, I think, to make serious progress on the issues that affect us as patients. I get the impression some of us are on LNE, though there are also some people on there who sound more accepting of some of the things the IDSA guidelines group has written, too - putting them somewhat further away from the middle, even.

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    3. Hi CO,

      You asked:

      I'm curious: What reasons haven't I stated that you think I could have?

      I was referring to things that I’m only guessing you have no personal knowledge of -- and in particular the types of things that are unique to women. Doctors who recommend a hysterectomy because a woman experiences a worsening of her symptoms around the time of her menses is just one example. While I realize that cyclical worsening of symptoms and questionable hysterectomies aren’t confined to Lyme disease patients, it can be devastating to a woman who may have desperately wanted to give birth to one or more children.

      As far as acceptance with regard to physical limitations and goals that are no longer achievable, my level also varies day by day and sometimes hour to hour – often inexplicably. Thank goodness for the moments of increased hope and resolve to stick it out no matter what, or I’m pretty sure I wouldn’t be alive at this point. Those with other “invisible disabilities” can probably relate in many ways, but there is certainly a shortage of support when it comes to people with tick-borne illnesses. Maybe it’s a bit of “the grass is greener on the other side”, but I have faced other health challenges in the past, and there was definitely more in the way of support from the medical community and society at large.

      Thank you for writing about things that may not be easy or come naturally to you. I think you’ve done an excellent job of conveying what it’s like to be physically present and yet not be able to participate fully in social situations – or life itself.

      By creating this blog and posting on LNE, I think you have provided many people with food for thought, and this is really all you can do. Those who are receptive will likely move of their own accord more toward the middle ground. At least I’m hoping that’s the case.

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  2. Rita said,

    "I was referring to things that I’m only guessing you have no personal knowledge of -- and in particular the types of things that are unique to women. "

    I would not get into details about my testes due to Lyme any more than I would get into discussing the possibility of getting a hysterectomy. It's not just about maintaining my anonymity - it's that there's just some places CO doesn't want to go. I'd be squeamish about writing anything about proctology exams, too.

    "Doctors who recommend a hysterectomy because a woman experiences a worsening of her symptoms around the time of her menses is just one example. While I realize that cyclical worsening of symptoms and questionable hysterectomies aren’t confined to Lyme disease patients, it can be devastating to a woman who may have desperately wanted to give birth to one or more children. "

    I understand something about this issue, and have written about it in comments to TickSuck in earlier entries here - I'm not unfamiliar with the monthly cycle of worsening symptoms.

    I think a hysterectomy is devastating to anyone who wanted to have children - especially if they hadn't had any and never had the experience they deeply desired. These days hysterectomies have been pushed for by the medical profession more than they are warranted, too - just as C-sections have been, out of a fear of liability. I think everything that can be done to avoid major surgery should be done, regardless of what it is.

    "As far as acceptance with regard to physical limitations and goals that are no longer achievable, my level also varies day by day and sometimes hour to hour – often inexplicably. Thank goodness for the moments of increased hope and resolve to stick it out no matter what, or I’m pretty sure I wouldn’t be alive at this point. Those with other “invisible disabilities” can probably relate in many ways, but there is certainly a shortage of support when it comes to people with tick-borne illnesses. Maybe it’s a bit of “the grass is greener on the other side”, but I have faced other health challenges in the past, and there was definitely more in the way of support from the medical community and society at large."

    I'm just going to nod loudly to all of this from where I sit.

    "Thank you for writing about things that may not be easy or come naturally to you. I think you’ve done an excellent job of conveying what it’s like to be physically present and yet not be able to participate fully in social situations – or life itself."

    It's like being there... only I'm not totally there. Not present. It's almost like being drugged, but I know I am not. Everything - including time - exists in a haze.

    "By creating this blog and posting on LNE, I think you have provided many people with food for thought, and this is really all you can do. Those who are receptive will likely move of their own accord more toward the middle ground. At least I’m hoping that’s the case."

    I'm hopeful. I think it's not just me or Pam or Dr. Fallon - there are others out there in the middle, including researchers who want to know what the truth is and recognize there are a number of unknowns around Lyme disease.

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  3. Thank you. I too am in the middle and so have avoided most Lyme message boards and websites and so forth. I just don't feel like I fit in. It took me a very long time to even decide WHERE I belonged. When first investigating Lyme disease the reading and back and forth in my mind (I have Lyme, I don't) and trying to decifer what was or wasn't true, who was or wasn't trust worthy was very hard for me. I even felt I perhaps wasn't sick enough to have Lyme or complain about it since I knew of some people in wheel chairs or completely bedridden. I even knew a couple of people who had been in comas. I felt I was in my own private Hell for a while. Looking back I was very sick indeed. I just lucky enough to manage to get up most days and go through some of the motions of living. It's so true what was said about people not seeing us when we are sickest and in bed and so of course we don't look that bad when they do see us and we are feeling better. I don't even answer my door when I'm having a bad day.
    The cycles - that was the worst for me. I thought I was losing my mind. After about 6 months my husband started kidding me about cycling with the full moon. He was right - every 28 days I would be a ball of misery in the blackest deepest hole with no sight of light. This was before I knew I had Lyme. When my LLMD told me about the cycle of the bacteria it was as though a weight had lifted off. It all made perfect sense then. I'm a woman of a certain age - already been through the change and never had I experienced anything like those few days during the cycle of the Lyme bacteria. It was horrible.
    I was diagnosed with several auto-immune diseases years before Lyme and just kept getting worse and having more systems imvolved. I personally think it is an auto-immune problem coupled with an active infection. I should say I suspect it was caused by the bacteria - the auto-immune cascade that is mentioned in some papers. I just happen to think the bacteria still lurks in my body or I wouldn't be subjecting myself to the treatment.
    Two years into oral treatment I hope to at least get a little better. I anticipate having this possibly the rest of my life. I just want to be able to mostly keep it in check and be able to start treatment again if necessary.
    Again, thank you for verbalizing what I find difficult to do. You really hit a chord with me.

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  4. CO,

    I too am usually reluctant to mention some of the more intimate details of my health, hence my rather vague "for all the reasons you have stated (and some you haven't)" contained in my first comment.

    Although I have undergone surgical procedures, a hysterectomy isn't one of them. I was actually referring to other Canadian women with Lyme disease who were essentially talked into having a hysterectomy that ultimately provided them with no symptomatic relief whatsoever. For some, it actually made things worse.

    I chose one of my surgeons specifically because she is a pioneer in minimally invasive procedures and because she recommends other treatment options be tried (when appropriate) before resorting to surgery of any kind. I must say I received excellent medical care from this doctor and wouldn't hesitate to return to her in the future.

    Thank you for providing the link that includes information about monthly flares for women. I seem to recall someone on CanLyme asking specifically about this, and I'll try to remember your blog entry if the question comes up again. I must admit that I don't remember monthly flares being an issue for me when that would have been relevant, but then again I had so many mysterious health issues popping up on a regular basis that I may simply not have noticed. At one point I was being investigated for possible ovarian cancer due to a host of troubling symptoms that accompanied a highly suspicious cyst. Thankfully it turned out to be a benign (but rather atypical) ovarian cyst that needed to be surgically removed anyway.

    While it isn't fair to blame every health issue we may experience on Lyme disease, there's no reliable way to know what is, and isn't, related to possible changes in our bodies as they do their best to cope with an untreated infection and any long-term consequences of this.

    Yes, you're absolutely right about there being a number of researchers who are working diligently to come up with answers. Those dedicated souls probably don't get enough credit.

    As far as being in a haze, losing track of time continues to be one of the most troubling aspects for me. As a former IT project manager, I previously had a very keen sense of time, and others viewed me as both organized and productive. The contrast between then and now can be rather unsettling, I must admit. Now it often feels like I'm floating through life -- biding my time in a way. Some of this may be attributable to not working, I realize, but there's definitely more to it than that.

    Speaking of losing track of time, the last time I checked the time was literally hours ago, and I should be trying to get some sleep.

    Take care, CO.

    Rita

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    1. Rita,

      Sorry I haven't gotten back to your comment here sooner. I intended to respond closer to the time you posted and things just piled up on me.

      "I chose one of my surgeons specifically because she is a pioneer in minimally invasive procedures and because she recommends other treatment options be tried (when appropriate) before resorting to surgery of any kind. I must say I received excellent medical care from this doctor and wouldn't hesitate to return to her in the future."

      I'm glad you found a good surgeon who does minimally invasive work and not only that but has been a pioneer. She would have a lot of experience with what she does, then. This isn't the first time I've heard you sing the praises of a Canadian doctor - you seem to have had some luck finding them.

      "Thankfully it turned out to be a benign (but rather atypical) ovarian cyst that needed to be surgically removed anyway."

      Good that it was benign. Out of curiosity, do you think atypical cysts (ovarian or otherwise) are a more common problem for people who have had Lyme disease or other tickborne illnesses?

      "While it isn't fair to blame every health issue we may experience on Lyme disease, there's no reliable way to know what is, and isn't, related to possible changes in our bodies as they do their best to cope with an untreated infection and any long-term consequences of this."

      I agree. There is parallel and divergent evolution in our bodies going on. It isn't always clear whether an infection sets the ball rolling on a new condition or if it's genetics or some other factor.

      (more)

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    2. (For Rita - more - cont'd)

      "As a former IT project manager, I previously had a very keen sense of time, and others viewed me as both organized and productive. The contrast between then and now can be rather unsettling, I must admit. Now it often feels like I'm floating through life -- biding my time in a way. Some of this may be attributable to not working, I realize, but there's definitely more to it than that."

      I have a similar problem. I don't think it's just about not working - I think it's a fairly common symptom for those suffering from this condition of PTLDS/chronic Lyme.

      The sense of the passage of time changes, I think, because the brain's ability to take in various kinds of stimuli changes - plus one's perception of time changes because one is moving more slowly and generally thinking less clearly due to fatigue (and possibly caused by encephalopathy, vasculitis, or other conditions which infection may have triggered - temporary or permanent). (See http://columbia-lyme.org/patients/ld_spinal_fluid.html for ideas of some of the ways Lyme disease may affect the brain.)

      I definitely know I have failed at being able to "multi-task" since I acquired Lyme disease. It's my understanding that there is no such thing as true multi-tasking out there - and my failure to do it is really more a failure of being able to gracefully and quickly switch tasks or swap time back and forth between tasks. I can't transition well from one task to another. I drop the ball. There is one exception: I seem to be able to swap tasks reasonably well on a computer.

      I don't know what makes using a computer different than real life tasks/interactions but I'll hypothesize:

      It seems much easier and less fatiguing to me to type online to people and read different articles and web sites than it is to talk to someone in person or attend a birthday party (especially if someone's small children are attending).

      Maybe it's because when I'm behind the keys, I control the rate at which I take in and give out information - but when information is given in real time, it's generally happening more quickly and not within my control - which means using more energy and becoming fatigued more easily/earlier.

      I am usually missing a lot more information if it's streaming at me in real time - I think the subconscious part of my brain still knows it's "there" and is worn out from trying to process it (it can't - it fails and perceives it as overwhelm and noise). Translation: There are more distractions in real time than there are online, and it's more difficult for my brain to stay focused in such circumstances.

      I'm going to think about this some more. That and the general issue of losing time and my changed perception of time. I know when I had seizures I lost moments of time in chunks. I was later told I appeared to be totally spaced out, and after snapping out of it, looked at the clock and realized that I had no idea where the time went.

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  5. Bea K,

    Hi and welcome to Camp Other blog. Thank you for reading and commenting.

    I know how you feel. I don't feel like I fit in in a number of ways either. I do visit and read a few Lyme forums/boards to read about scientific publications and occasionally look at what other symptoms and treatment people have. I don't tend to linger, though. Lymenet Europe is where I spend most of my non-blog time these days - and also CanLyme. I occasionally read other Lyme blogs like Joanne's Looking At Lyme blog and Jenna's Lyme blog just to see what they are writing about... Those, and Spirochetes Unwound and occasionally LymeMD. (I don't link to everything I read on the sidebar of this blog.)

    I don't know where I belong, either. I created this blog partly as a way to express my indignation at writers at the Chicago Tribune, but as time went on, I realized that I continued to write so I could see more of the kind of content I'm interested in and hopefully get other people talking about it. And we have - there are some posts on this blog with over 40 comments on it. I don't think that's too shabby for a little esoteric blog like this one - and hopefully in the future more people will participate and we'll discuss a greater range of topics.

    Regarding your own self-questioning - "I have Lyme, I don't" - it sounds like unlike me, you found yourself having symptoms that matched Lyme disease but you didn't have any memory of a tick bite and getting sick shortly after one? Would that be correct? I know that if I were in your situation, I would be having the same struggle in trying to figure out what was wrong - because without that history of a tick bite, there are a number of overlapping differential diagnoses to consider. I understand why sometimes people end up going from doctor to doctor to try to figure out what's wrong.

    (more)

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  6. (Bea K - more - cont'd)

    I haven't been completely bedridden in a while. Treatment has improved my condition. But I'm far from "normal" even if I have more days where I seem more functional than not.

    I am very glad that so far, I have managed to avoid long term use of a wheelchair, have not had seizures except for one time when I was starting a new med (and seizures were a potential effect - but seizures also be caused by neuroborreliosis), and I have never fallen into a coma. I haven't been THAT sick. But I have had the experience of crawling to the bathroom on my hands and knees because I didn't have the strength to walk the entire distance and had vertigo as well. And I have had the experience of lying in bed and wanting to remain completely frozen in place because even the slightest movement would send pain shooting through my ENTIRE body. It was really the worst pain I have ever felt in my life... Not so much fun.

    I know what my own private Hell has been like. I don't know if there is any way to compare Hells, or if I'd want to. I think there's a point one reaches where something is shitty all the way around, and its getting worse really becomes irrelevant. You just want the pain to end.

    I do find that the longer I have been sick, the harder it becomes to remember what it was like to be completely well. A friend of mine who has had CFS for many years told me that this is Mother Nature's doing - the brain fog is like an anesthetic that numbs your memory with time. I'm not sure what to think of this, but maybe there's some truth in it.

    I'm sorry that the cycles were really bad for you. If you read the comment thread at the link above, it's clear both men and women suffer from some cyclical change in their symptoms - it just seems more dramatic for women. I think I recall that there was some evidence that it is more dramatic for women because when women's hormones drop around the time of PMS, the immune system is weaker then - so any infection can surge... Sorry I can't remember the citation now - I'm going to have to look for it.

    Regarding the autoimmune angle: I don't know if post treatment Lyme disease is a combination of autoimmune condition and infection or if it's some other combination of causes. I definitely think that some inherent dysfunction and/or dysregulation in the immune system plays a role in how the infection proceeds - along with both the genetics of the host and the Borrelial strain. The more research I read, the more this has been suggested or made a direct inquiry of in the discussion section of various papers. So I hold this hypothesis on the backburner while I read new research and see if it adds to the evidence.

    After two years of oral treatment, are you seeing improvements - and what kind of improvements? How well are you doing when you are off antibiotics?

    Well, it's late here - I should wrap things up for now. Thanks again for stopping by and commenting.

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  7. Sorry for the late reply, C.O.
    The first improvement I saw when I started anti-biotics was the cognitive stuff immediately got better - not gone but much better.


    After two years of oral treatment I am seeing an improvement overall. It's not earth sharttering though. Before treatment I didn't know if I could live the rest of my life that way. Now I know I can but it's just okay. The good days are better and last longer and the flares are, for the most part, shorter and much less intense. I can get a sense of hope finally.

    Oh, and about not knowing for sure whether or not I had Lyme, when I started my health decline 15 - 20 years ago I had Lyme tests done twice. I only know this because I requested all my records. They were running every test they could think of but never came up with anything conclusive other than connective tissue disease and maybe fibromyalgia.

    After I started investigating Lyme disease, I remembered I had taken photos twice of a strange mark on my skin that was a red circle with a clear center. They were the only photos I'd ever taken of something going on with my body. They were about 5 or 6 years apart. I also pulled a dried tick (didn't know what it was at the time and saved it to show a doctor) out of my ear once. Ewww! I work outside for a living, hiked and camped and frolicked in nature with no abandon all my life so I wondered why wouldn't I have Lyme?

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    Replies
    1. Hi Bea,

      Don't worry about a late response. I'm pretty patient, and some people have responded to posts here months after they were originally posted.

      I'm glad antibiotic treatment has helped you. I have to admit that the first two years of treatment is when I saw the greatest gains. My greatest cognitive gains were on treatment for Babesia. I think my flares are also shorter and less intense now, but it's been several years since the tick bite and I don't know how to compare my experience to someone else's since I have had periods without treatment as well.

      So in your case, you suspected Lyme disease because of your symptoms and due to remembering the photos. There was a smoking gun, in other words - but you hadn't made the connection when your health first began to decline. With your history and lifestyle, it totally makes sense you would have been exposed to Lyme disease.

      Thank you for sharing your story.

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    2. I should clarify something.

      My treatment gains have come in two waves: The first two years in treatment took me from being completely bedridden and crawling on my hands and knees to the bathroom to being able to walk with a cane and work part time.

      I had a relapse, though, and that set me back again. Not to being completely bedridden, but to a degree where between cognitive and physical symptoms I couldn't work any more.

      Delete
  8. Dear Camp Other,
    I have been following your blog for several months. I read Part 1 of this post in January, and identified with it so strongly that I cried. I couldn't come back until today.

    I was diagnosed with neuroborreliosis two years ago after being seriously ill for 7 years. My only known tick bite was in the late '70s. I got a subsequent serologic diagnosis of ehrlichichiosis, and later a clinical diagnosis of babesiosis. When I got sick, I was starting a biology PhD program. Now, I am homebound and cannot work. Like yours, my life has been -- what's the right word? Nuked? Shattered? -- by this disease. The worst damage for me has been to my brain and vision; I have very poor short-term memory, difficulties with executive function, and >70% vision loss.

    Two years into treatment, I'm slightly better cognitively than I was before I started, but I have had to face that I will probably never regain full function -- which is too bad, because I sure know what model organism I'd like to study.

    Thank you so much for maintaining this blog. I continue to find it useful, interesting, and thought-provoking, and I appreciate your non-partisan stance more than I can tell you. Now that I have finally de-lurked, I'll try to post replies more often.

    With best regards
    Heidi

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    Replies
    1. Thank you for reading along, Heidi.

      I'm sorry, I didn't mean to make you cry. This stuff is hard, though.

      Know that you are not alone - you have been through hell, I've been through hell; this series of unfortunate events has completely changed all plans - and so the question becomes, "Now what?"

      I'm sorry you had everything stop in its tracks and life has been hard. I am glad you've sought help and have had treatment.

      If you don't mind my asking, how was it determined you have had neuroborreliosis? To what extent have you sought out second opinions and made sure to rule in/rule out any differential diagnoses? It's important to make sure something else treatable or manageable isn't going on - missing other conditions can complicate one's treatment and progress.

      I am sorry that improvement has been slow for you during these two years of treatment, but I don't know that I would begin donating those biology books to the local library just yet?

      You may have several years of setback and not a lifetime of suffering with the degree of disability you have now. I know it's only anecdote, but others have been through similar situations and experienced improvement. It just took. a. long. time.

      I don't know what degree of improvement to expect. Everyone is different, so unfortunately I can't tell you what your path will be. But I can tell you that three years into my own treatment is when I began seeing more cognitive gains when I initially got slammed very hard cognitively. After improving cognitively, getting rid of the pain and fatigue has been the longer slog.

      But this is my story, not yours. Yours will be your own story.

      In the meantime, writing this blog is one of my goals. It may not be the same as doing the job I had to leave behind - but this is a worthwhile goal if it helps even just one other person. So I do it.

      I'm on this path now, and I'm going to make the best of it. Maybe you're not doing a PhD at the moment, but even with neuroborreliosis, you have value. You have worth. Your life means something even with these setbacks. Never forget that. You are still in there, your brain is struggling to work and wants to work - and by challenging it a bit now and then, you are helping it to grow new connections and heal.

      Hang in there, Heidi. And welcome to Camp Other blog.

      Delete
  9. Thanks for your kind and encouraging response. Sorry I didn't see it till today. I have been getting ready for an inpatient trial of IVIg for my eyes that is supposedly going to take place sometime next week. (Still waiting for an admission date -- gotta love it. Not.)

    You asked about the neuroborreliosis diagnosis, and whether any differential diagnoses had been ruled out. Good question. The short answer is yes -- long version follows.

    Because of my extremely unusual pattern of vision loss, I've been evaluated extensively for MS and for other eye-specific and neurological conditions, and I have participated in several clinical studies. I did have a brain lesion, but it wasn't in the right place for MS, and it is no longer visible on scans that were performed a few months after I began treatment for Lyme.

    Because I've had chronic diarrhea since 2003, I've also had extensive GI evaluation, including multiple scopings from both ends and testing for celiac sprue. I did turn out to have celiac sprue, but my symptoms did not improve on a gluten-free diet. Freakishly, it also turned out that I had a rare and previously undetected GI tumor. For a while, everybody thought I was going to turn out to have paraneoplastic syndrome. Multiple rounds of paraneoplastic testing were negative, though, and my symptoms did not improve after the tumor was removed.

    For 5 of the 7 years between above-the-radar serious illness and diagnosis, I was lucky to have an extremely determined, research-oriented primary care doctor who would not give up. She considered Lyme early in her differential, but 2 ELISAs and LabCorp IgG and IgM Western blots were negative, so she moved on. She carefully documented my neurological symptoms and joint deterioration, and kept an ongoing written diagnostic summary of all the tests she ordered. There is Alzheimer's on both sides of my family, with early onset on one side, so that was included in the differential. Apparently, the specific pattern of defecits I have isn't like the one seen in Alzheimer's disease, for which I am heartily grateful. She ordered three rounds of cognitive testing, spaced one year apart, which ended up being very helpful; there was significant deterioration between tests before I was treated, while subsequent testing after a few months of treatment showed improvement.

    When I left school, I lost the wonderful PCP, who worked at the school clinic. In the next two years, as I continued to seek a diagnosis, I actually declined an offer to be re-tested for Lyme based on my negative ELISAs (I only read about the problems with Lyme ELISA testing after I was diagnosed). In 2009, with my aunt's encouragement, I finally raised the question of Lyme again with a different family physician. He ordered a full Igenex test panel for me. Consistent with my previous results, the IFA was negative, but both the IgM and IgG Western blots were positive. Neither of us expected that, so the doctor ordered a second set of Igenex Western blots. When those were positive as well, he began treatment. He continued to order Western blots every 6 weeks for several months.

    It has been a while now since I had a Lyme WB; the last time was in September 2010, and the last few WBs were ordered from LabCorp. Those didn't show as many bands, and considering my previous negative LabCorp results, I wonder if that's a result of variations in antigen sensitivity between the two labs. I know there's controversy on that subject. The doctor who is currently treating me, an infectious disease specialist, was convinced by the Igenex and other data, and has put me on doxycycline monotherapy. I have had better cognitive function when I am on doxycycline or tinidazole, and worse cognitive function with cephalosporins and Malarone; last spring, after an attempt at multi-drug treatment, I ended up with C. diff. So, for now we're sticking with the doxy.

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  10. Heidi,

    Thanks for sharing the details of your medical journey. Sounds pretty intense and like you have seen a lot of different specialists and underwent a lot of tests.

    At least you finally found out you are suffering from neuroborreliosis and have been under treatment for that. But it is a lot to go through, and you still may need to undergo other tests from time to time if any new and unusual symptoms crop up - just to rule out that something new hasn't shown up on the scene.

    Reading through your history, I have to wonder what triggered chronic diarrhea - 8 or 9 years of that has to be a challenge to live with. If I were in your shoes, I'd be wondering if it was a CNS/nerve branch problem as well as wonder if there is some inherent electrolytic and/or bacterial imbalance. I'm glad to hear they found the tumor and removed it before it could cause more trouble of the kind you don't need. But yes, this intestinal issue is a remaining mystery you don't need either.

    What's the latest news on the IVIG trial? I hope that's going well. Is there anything you can share about the trial and its milestones? How long will you be in treatment?

    I find your test results yet another data point for the seronegative Lyme disease file folder. There seems to be plenty of evidence that positive results on Lyme disease tests can be significantly delayed from the time of infection or not show up at all. I've wondered how much of it is variations in antigen sensitivity between labs - they aren't standardized. I suspect that antigen by strain type may matter and that some cases may even be undetected relapsing fever Borrelias which won't get picked up by standard Lyme disease tests anyway. There are various factors to consider - it is as you said a controversial matter, and something I am trying to untangle.

    Be careful with the antibiotics. Yes, they can help a lot - but as you've discovered, they have their downside. C. difficile is one of the more well known risks of this treatment, and cephalosporins and penicillins are more notorious for this. But there is also a risk of developing resistance to staph, too, and that is becoming a growing problem for people who are healthy and not taking antibiotics, too. I hope that doxycycline works well for you and you don't suffer any new problems with it.

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  11. Dear CO,
    You asked for an update on the IVIg.

    I had two loading doses (125g each) and two smaller doses (25g and about 35g) over three months. My visual fields and mERG (multifocal electroretinogram) showed marked improvement after the first test, and I experienced significant improvement in my other neurological symptoms as well. After the loading doses, I felt well enough to go out for a few walks, and I was able to be more active around my house, doing some cleaning and even pruning a bush in the garden. Unfortunately, I began to experience IV access problems with the third dose. I got a port implanted in June, but reacted to it and had to have it removed a week later -- severe itching and skin breakdown over the port.

    Then, there was a two-month hiatus. In August, with a different neurologist, I started SCIg (subcutaneous immunoglobulin). The goal was to achieve the same dose per month that I had been getting with the IV infusions. For some reason, though, the sub-q infusions exacerbated my symptoms rather than relieving them. I was taken off the infusions after 2 weeks (8 infusions) at the end of August.

    My vision has started to deteriorate again, although it is not back to where it was before the IVIg. I am still struggling with a bad exacerbation of my chronic diarrhea, severe fatigue, and thick brain fog. I stopped the doxycyline to see if that would help my gut, but it didn't. O&P and C. diff tests were negative, so the doctor who has been treating my Lyme put me on a short course of Flagyl to see if that would help. It hasn't.

    I saw in a recent post from you on LNE that you are not doing well yourself right now. I'm sending empathy and support.

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  12. Hi Heidi,

    Thank you for returning to Camp Other blog and providing an update on your condition. I was reading these comments recently, and wondered if I would hear from you again.

    It sounds like direct IVIg was a win for you, other than the port. Has anyone offered an alternative port design which you might tolerate? Did they determine which component or components of the port gave you a reaction?

    Sorry to hear SCIg didn't work for you at all - that must be really disappointing for you after having some success on direct IVIg.

    I don't have much information to go on here, but I'd like to ask: Have any of your doctors looked at mastocytosis or some sort of mast cell disorder as a cause of these reactions and some of your symptoms? (See http://en.wikipedia.org/wiki/Mastocytosis for general outline on the condition, and scan this Mast Cell Disorders Forum to see if any of the other posters have symptoms and history similar to your own.) I don't know if this is a possibility, but doesn't hurt to look into it?

    How many of your current symptoms have been hypothesized to be related to some autoimmune condition versus infection? Have any other treatments been recommended - such as plasmapheresis - or even to try steroids alongside the antibiotics you are taking?

    With the celiac sprue, have you eliminated all gluten as much as possible?

    Have you been tested for food allergies in general, because these could potentially contribute to your condition?

    These are shots in the dark, but I figure it doesn't hurt to ask.

    I'm sorry to hear you have experienced a reversal, and I am hoping that you can find a way to improve again and move forward soon. Perhaps a wider survey of the terrain is needed to see if more that one condition is contributing to your symptoms at present, and I hope you have good doctors you trust who can navigate with you through additional alternative possibilities. (Not that neuroborreliosis hasn't caused your symptoms - just that it is wise to consider other conditions as well which might be present or may have been triggered by infection.)

    You wrote,

    "I saw in a recent post from you on LNE that you are not doing well yourself right now. I'm sending empathy and support"

    Thank you for your empathy and support, it is greatly appreciated.

    I admit to being somewhat confused, though: I haven't posted to LNE in months, though I did write in comments here (as well as in private messages elsewhere) that I was taking a hiatus from posting.

    In the past several months, I have had some tasks outside of this blog which required a great deal of my attention offline. So I haven't been posting online lately - but thankfully it's not because I have been severely ill.

    My symptoms have been up and down, overall, but in the past several months they actually improved somewhat. One reason may be that I added high doses of vitamin D3 to my diet since I learned I was vitamin D deficient, and in doing so, I have experienced an improvement in pain and fatigue...

    I still have joint pain and fatigue, but any improvement is welcome - so I will continue this experiment and get my D levels tested after a couple months to see where things stand.

    ReplyDelete

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