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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0 Where Have All The Sane Lyme Patients Gone?

Here is an exchange I've seen elsewhere on the internet, names removed to place more focus on the content:

Do you think that morgellons stuff is a joke? Or lida mattman saying that Lyme can be transmitted by doorknobs and pens? Or that every sample she's ever seen shows Lyme?

No, those who put forth these theories are not joking. And no, I do NOT believe these things. And YES, I think they are damaging.

there are minions ready to believe anything.

This is true --patients who remain ill and find themselves fighting mainstream treatment guidelines have become angry and confused, and almost anything sometimes seems possible to them. They lack the scientific/medical background to distinguish.

Sober? Maybe. Not when they insist that mcsweegan is poisioning their well water though. I've heard some crazy stuff.

This is an old story. Let's move on. The baton has passed.

More sober and savvy than most people who have ever posted here? Sure. But that is like saying that they see and hear better than Helen Keller.

Many times people work behind the scenes because of forums like sci.med, which have gotten issues so knotted and confused.

I know some people with Lyme who aren't extremists. But they're few and far between.

Define extremist: In some circles, simply believing the cure didn't take after 28 days doxy is considered extreme. I find that if I talk to people logically and rationally they can respond in kind. Most people I have met in Lyme are turned off by the outrageous antics of the most notorious protagonists here, and I will not name the names. I don't know who you have met --but those I speak to, while sometimes empathetic, are NOT marching in line with a RICO lawsuit.

I've seen more than one "llmd" and waited in their waiting rooms with other lyme patients and heard them start talking or started talking with them. They're "informed" but don't seem to distinguish between what is good information and what isn't.

They are very confused by the situation --but the confusion starts with what medicine has handed down to them, not with the patients. If you create an artifactual disease that people don't have, then the patients who don't fit your model might be accused of factitious illness. It's a very frustrating situation for patients. The psychopathology starts with medicine, and patients are caught up and then labelled pathological, themselves. It is one of those Freudian boxes --the patients find there is no way out.

I don't see a lot of rationality anywhere.

It's hard to be rational in the face of an irrational situation that predated your involvement.

I don't think that two wrongs make a right and that rigid academic experts views are "balanced" by the views here.

Of course I do not believe this --I am simply saying that extremism begets extremism. I hold to my view that the dysfunction in Lyme was kicked off by biomedicine and not by patients.

It is just as easy to conclude that both are wrong and that maybe the "truth" is somewhere in between. Or nowhere in between but somewhere else entirely.

You must resolve dysfunction before you attempt to learn the truth.

I think you're glossing over things. Let's say you reject what the  academics say. Why does that mean that you have to buy into what Lida Mattman says?

I don't buy into what Mattman says. And nor do I reject academic research --some of what the academics say is right-on. But some of them have misused their craft and trampled the scientific method (perhaps unwittingly) in the process creating an unduly restrictive disease definition, discarding or twisting data, and spawning an untenable, dysfunctional situation out in the field. Most patients who appear dysfunctional once they get to Lyme were perfectly functional before --it is the scene and the situation --the disturbing dissonance between patient experience and medical paradigm-- that is at fault.

Rejecting the false negatives on elisa or western blot doesn't mean accepting a specific Lyme speciality lab's test results does it?

we don't need to keep debating this --of course not.

Have Lyme patients made things better?

Sadly things have not gotten better, but worse, IMO.

So you didn't answer the question. Where have all the sane Lyme patients gone?  Where is the forum, in real life or on the internet where I can find them? Where do they dominate? Where is rationality revered over reactionary radicalism?

I have met many MANY sane Lyme disease patients. I am sorry you have not. They are everywhere.

Lyme patients are fully to blame for how they've responded to the medical establishment.

Lyme patients are between a rock and a hard place --they have been dismantled, dismissed, and made fun of; they have been misdiagnosed for so long they develop chronic illness when they could have been totally cured. Lyme patients are angry. But they have not often strategized well in the past, I'll grant you that.

It's been a very bad confluence of situations and personalities all around, I'm afraid. It is, in short, a disaster: But if you don't look to what has transpired in medicine and science to stanch out the dysfunction, you will be spinning your wheels to the end of time. Should Lyme patients do a better job of achieving this? Yes of course.

---

And another comment from a Chronic Lyme Disease patient seen elsewhere, from someone who reminds me of LymeEngima (but was not identified as such):

"I have Chronic Lyme and I hated the movie “Under Our Skin”.  All it did was try and instill panic in people who are already sick and vulnerable to making desperate choices.  [...]

The IDSA Guidelines scare me. The doctors who treat Lyme scare me. The treatments scare me and the fear and anger around the whole subject scares me. Nothing about Lyme resembles even handed scientific principles and more closely resemble hysteria."

Comments such as this are rare to come by online. Few Lyme disease patients have said anything negative about UOS or admitted that everything about Lyme disease scares them.

---

These comments are a prelude to my own post about why and how dealing with Lyme disease drives me crazy, so I put them here for review and discussion.

Any thoughts from those of you reading along?

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0 Research And A Personal Story: Computer scientist researches own Lyme disease

Well, this has been posted elsewhere, but I just had to share it here, too:

Computer scientist researched her own condition, Lyme disease

Source link: http://www.post-gazette.com/pg/11101/1138165-114.stm

Read the above article, and see if you see yourself (or someone you care about) in this woman's shoes. (I know that I can relate to her own search for reliable medical information, that's for sure.)

After much research from many different medical sources, Ms. Mankoff decided to try long-term antibiotics. After 18 months of antibiotic use she could stop treatment and go on to write professional papers, work full time, and do research on how members of the Lyme patient community seek out information on Lyme disease diagnosis, treatment, and support.

There is mention in the Post-Gazette article above that the paper based on her research of the Lyme patient community will be presented at an upcoming conference on computer-human interaction, CHI 2011.

That paper is:

J. Mankoff, K. Kuksenok, J. A. Rode, S. Kiesler & K. Waldman, Competing online viewpoints and models of chronic illness. In Proceedings of CHI 2011. To Appear (Full Paper)

And here is a link to the FULL TEXT (no subscription required):

http://www.cs.cmu.edu/~assist/publications/11MankoffCHI.pdf

If anyone happens to be in the Vancouver area this May 6 and would like to attend the session, it will be from 4:00-5:20 pm. (A link to the conference appears at the bottom of this post.)

A description is as follows:

Session Chair: Julie Kientz (University of Washington)
Competing Online Viewpoints and Models of Chronic Illness - Paper

Session Chair: Julie Kientz (University of Washington)
Competing Online Viewpoints and Models of Chronic Illness - Paper
Jennifer Mankoff Carnegie Mellon University,
Kateryna Kuksenok University of Washington,
Sara Kiesler Carnegie Mellon,
Jennifer A. Rode Drexel University,
Kelly Waldman Duke

Abstract »

People with chronic health problems use online resources to understand and manage their condition, but many such resources can present competing and confusing viewpoints. We surveyed and interviewed with people experiencing prolonged symptoms after a Lyme disease diagnosis. We explore how competing viewpoints in online content affect participants’ understanding of their disease. Our results illustrate how chronically ill people search for information and support, and work to help others over time. Participant identity and beliefs about their illness evolved, and this led many to take on new roles, creating content and advising others who were sick. What we learned about online content creation suggests a need for designs that support this journey and engage with complex issues surrounding online health resources.


If you wish to attend CHI 2011 for only a day session on site, you must be warned that registration is steep:
http://chi2011.org/attending/registration.html

If you can't make it to Vancouver and pay for admission, consider sitting at home, reading the pdf of the paper above, and emailing Ms. Mankoff with comments and questions.

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8 Lyme Disease And The Alternative Medicine Quandary

Today I want to discuss one aspect of the use of alternative medicine in treating Lyme disease and its coinfections. And that aspect is one of perception, politics, promotion, and demonstrating the need for research.

This is a difficult issue to bring up, because I myself have been divided on it.

I find it to be a bit of a quandary, really.

quan·da·ry/ˈkwänd(ə)rē/Noun

1. Perplexity or uncertainty over what to do in a difficult situation: "Jim is in a quandary".

2. A difficult situation; a practical dilemma.

Prior to my coming down with Lyme disease and coinfections, I became a staunch advocate of Traditional Chinese Medicine (TCM). This was no small deal for me at the time, either - and a surprise to others because I was a total skeptic.

I tried TCM on the advice of a friend, and because they had gifted me with my first acupuncture session. Not wanting their eagerness get the better of them, I told my friend point blank not to expect too much of me in terms of lauding the merits of treatment afterwards because I was, in fact, skeptical.

As it turned out, - to my surprise and relief - acupuncture helped my pain despite my skepticism, so I continued to see an acupuncturist for pain whenever it came up and the cause was not an emergency room level problem.

When I was dealing with a number of upper respiratory infections, asthma, and back pain, I found that a combination of acupuncture and the right selection of Chinese herbs helped reduce my symptoms considerably and shorten the length of time that I suffered... A really bad case of bronchitis was beaten to the ground after a round of some rather earthy pungent and bitter herbal tea that I drank by the gallon for only a few days - when bronchitis was something that typically settled in me and made a home in me for a phlegm-filled month. 

Suffice to say, I was impressed.

And as you can guess, I have no double blind, randomized controlled study to back my experience. No, my experience is mine alone. And I can't tell you how it worked or why, although preliminary studies have shown that acupuncture may lead to the release of endorphins and deepen the relaxation response - thus reducing pain. And some of the herbs that I used have evidence to support their therapeutic use as well.

This is good to know, and having more research and evidence to back my experience only enhances it for me. I like knowing that there is a reason that what I am doing works not only for me - it might work for other people - and that it isn't solely due to some placebo effect.

So you know that when I say I am not totally against Complimentary and Alternative Medicine (CAM), I mean it, based on the above.

However, I am not totally 100% in support of using CAM as a substitute for all allopathic medicine for personal and scientific reasons.

And I don't view all CAM the same way. It's not an all-or-nothing proposition for me: Some CAM is safe and effective; some is at the very least safe even if it is not effective; some is not safe or effective at all.

By the way, I view mainstream allopathic medicine the same way - it has varying degrees of effectiveness and risk as well.

Either way, if a treatment is not safe and effective - whether it is allopathic or alternative, I don't give a damn - I'm not advocating its use.

(Just an aside here, briefly - the issue of what constitutes "safe" versus "not safe" requires an entire post all of its own, because it boils down to defining risk and the ratio of benefits to risks for individual patients... keep that in mind, but on the back burner for now.)

I'd like to turn to the issue of politics and perception.

"The personal is political." 

Have you ever heard that statement? I'm sure many people have at some point. If not, what it means is that your individual choice is a decision that can affect many others once enough individuals make the same decision in great numbers.

For example, the decision to boycott a product:

If one person boycotts a product because the company donates money to a cause they do not support, that's just one person making a choice - but if thousands of people make that choice, it becomes a political movement and has an impact on the company due to lower sales and due to bad press once the boycott is publicized by the media.

In a similar way, a widespread show of support of using alternative medicine in substitution of antibiotics and antiprotozoal medication to treat Lyme disease and its coinfections could be viewed by many doctors, medical associations, members of the media, alternative medicine companies and practitioners - and even the IDSA guidelines panel for Lyme disease as communicating this message:

Lyme disease patients do not need serious antimicrobial medications if they are relying on treatments which are not supported by scientific evidence and clinical trials, and if patients have rejected the use of allopathic medicine.

The personal is political here, too.

Replacing antibiotics and antiprotozoal medication may be an individual choice, but if enough people do it, it can become a movement of its own. I am concerned that it can take on the appearance of a boycott.

The more people collectively focus on alternative treatment, the more it sends the message to others that the IDSA guidelines panel is right about something: Antibiotic treatment does not treat this infectious disease, and of course it doesn't, because it isn't a real infectious disease - it's Post Lyme Disease Syndrome, and there is no treatment for that.

Wait... you disagree with that? Is that what I hear you saying through that tangle of cables and satellite uplinks?

I'm listening... You're also saying what? That just because you treat Lyme disease and coinfections with herbs and supplements alone that doesn't mean that you're against antibiotic treatment for someone else?

Oh. Phew. Okay. I'm relieved to hear that... You support my freedom of choice to use antibiotics. And anything alternative I choose to use. Good to know.

Yet at the same time, please keep the big picture in mind and try to see where I'm coming from with all this:

The IDSA guidelines panel says that all you can do to treat PLDS is to treat it symptomatically. And they will continue to say to the public, in so many words, "We don't know what causes it, though we suspect some autoimmune disorder, and maybe somewhere down the line we'll come up with some way to deal with it."

And in journals for clinical microbiologists and molecular biologists - especially those slaving away in graduate school and on post docs - they'll say, "Let's develop vaccines because, you know, we don't want anyone else to contract Lyme disease that goes undiagnosed due to the delayed antibody response then have that turn into late stage Lyme disease. Vaccines FTW!"

And so, the system perpetuates itself, and the next generation of new researchers will say, "Maybe we can prevent more problems before they can even begin, and make money while we're at it, too. There's no money in antibiotic development - and there's not enough evidence Lyme disease can be a persistent infection - even if some spirochetes are left behind after initial treatment. Everyone says those 'chetes are not capable of reproducing and those unfortunate PLDS patients have some autoimmune disorder. Time to get to work on those vaccines and test kits!"

And they'll do it. Not because they necessarily want to screw over Lyme disease patients, but because this is what they have learned and know. And if they investigate what patients are doing online, their five minutes of direct observation of the patient community - if it happens at all - will be that of patients trying a lot of alternative treatments. Not of patients pushing for better treatment and cures from established allopathic medical associations and research institutions.

Maybe I'm wrong in this observation, and I'm willing to be corrected. But just as an experiment, why not try this? Go to Lymenet, Lymefriends, Lyme_fillintheblankhere_, and/or your Lyme disease support mailing list of choice, and count how many posts are about alternative treatments, protocols, herbs, and supplements. Then count the number of posts about organizing a petition for or backing a bill for more research, posts asking how antibiotic use addresses antigenic variation, or fundraising or protests in support of more research. Then tell me what the numbers are for each.

Dr. Cathyrn Harbor helps a
Lyme disease patient.

As I've said before, I don't think all alternative, complementary, or integrative medicine is a bad idea. It has its time and place, and that time and place is based on a personal decision between the patient and their doctor. Each person's treatment for Lyme disease and coinfections is individualized anyway - this is what everyone has been saying on the boards and mailing lists all along - and this is also what LLMDs and naturopaths have said as well

This patient-doctor approach of an individualized care plan tailored to the person is different from having patients and supplement companies and their representatives supporting the widespread use of alternative medicine online in patient support forums and mailing lists, and offline in support groups, fundraisers, workshops, and rallies.

Whether it is intentional or unintentional, the message being supported and sent to the medical community at large when so much focus is on alternative protocols is that patients do not need the serious medical treatment that has been scientifically proven to at least diminish if not entirely beat infectious disease. Either existing evidence-based treatments or research for new ones.

And who suffers from all of this? We do.

Those of us who show symptoms of persistent late stage infection.

Those of us who have already been abandoned by mainstream medical doctors and told that it's all in our heads, that our conditions are psychosomatic - rather than being told that it's possible we have infections that have disseminated to our central nervous systems and possibly our brains, since Borrelia is neurotropic and can disseminate to the CNS and brain early in infection.

With the general number of Lyme disease infections on the increase, does anyone even know how many people have CNS issues early in infection which may go untreated or under-treated because the symptom presentation can overlap with other conditions?

Especially without early positive antibody responses on tests?

Who is tracking these patient cases accurately, and who is following up on these patients months and years later? If it weren't for LLMDs and a small group of researchers, would anyone even have the slightest clue?

Infection could be literally in our heads. And not manifesting as some psychosomatic disorder, which is a convenient label by those who do not want to deal with the hassle insurance companies will wage over necessary IV antibiotic treatment - or the professional scrutiny that will come from other doctors in your clinic if you begin treating more patients with high doses of antibiotics.

So I look at this entire situation with a wary eye, and see that the situation as it is is currently self-perpetuating - even as I myself have used alternative treatment from time to time.

Japanese knotweed

This isn't about whether or not you as an individual decide to use alternative treatments.

I support your individual freedom to choose, as I hope you support mine.

This is about whether or not promoting them wholesale above and in place of the use of antibiotics and antiprotozoal medication is a good idea.

This is about whether or not there has been some widespread sense of dejection after the July 2009 IDSA Lyme disease panel review that has taken steam away from the push for more research.

This is about whether or not doctors who treat Lyme disease and coinfections - LLMDs - should include alternative treatments as part of their official treatment protocols and guideline statements... So much is already at stake for needing to have solid scientific evidence that patients suffer from a serious infection with severe chronic symptoms that can be effectively treated with known and tested antibiotics - let alone anything else.

This is about whether or not alternative medicine is effective for attacking the infections directly and - without empirical evidence of that happening in vivo - what using them actually is doing to help patients.

This is about whether or not testing these alternatives is adding an additional layer of division of forces, resources, and energy in trying to get funding for research when the basic fact of persistence along with persisting infection is what needs to be established.

This is about whether or not the amount and quality of existing research supports the long-term treatment of Lyme disease as a chronic infection - versus statements about its being some other condition.

Outside of these issues, there remain a lot of unanswered questions about the use of alternative medicine for the treatment of Lyme disease and coinfections, such as: How does one know that some of the alternative medicine being used has an anti-inflammatory effect versus an antimicrobial one? How does anyone know that even if some herbs can help with immunomodulation that there isn't some infection festering and reproducing despite it?

The problem is, we don't. And even as I support the use of alternative treatments for symptom reduction and improvement, and even as I want to alleviate my own suffering as much as I can - I don't, either.

And I'd really like to know what can truly fight off this infection or condition and use it and move on with my life. In five years, I've already seen so many different treatments come into vogue and fade into obscurity.

So far, there is nothing in the alternative medicine chest that has a long term clinically-proven history of beating back and curing spirochetal infections - anything from modern formulations to traditional Chinese medicine (TCM). Even the naturopath from Bastyr University whom I consulted advocated for the use of antibiotics - herbs and supplements were advised to be used in a supportive capacity only.

There will be readers here who disagree with these statements, and I understand your position - especially if in your experience you have had success through the use of herbal treatment plans. I ask you to please consider that while I'm aware that Lyme disease and its coinfection treatment is based on individual response and herbs may have helped you, that the heavy promotion of alternative treatments without the use of antibiotics and antiprotozoal medications for everyone can and does have a negative impact on the Lyme patient community.

And if the heavy promotion to replace conventional antimicrobial medicine with alternative treatments takes the emphasis away from confronting and demanding from scientific researchers and mainstream medicine a more effective treatment protocol that insurers will cover and research to settle the "does Lyme disease cause a persistent infection"controversy - the powers that be are not being held accountable for the failure of the modern medical system to address the issue of chronic Lyme disease and coinfections. 

The parties which put us in this position should be held accountable. If nothing else, you are paying taxes that finance these guys and cover some of their research. Hold them accountable. Demand value for your money as a taxpayer. Demand answers.

Ask them, "Where is the research on persistence that would solve this controversy? " Ask them, "When are you going to publish these pay-for-access research papers on open access servers so the public and media can read without a subscription - my taxes paid for the research that went into that paper?"

Ask them when they're going to do more to educate the public and primary care physicians about the need for follow up testing for Lyme disease if initial testing after a tick bite is negative, due to low antibody response early in the infection...

Ask them specific questions. Pointed, intelligent, well-researched, and decisive questions. Ask, then ask some more.

More doctors need to recognize, diagnose, and treat Lyme disease and other coinfections in its early stages. More need to be educated in the pathogenesis and possibilities of neuroborreliosis. More thorough tracking of patient cases over months and years needs to take place, with primary care physicians giving patients accurate Lyme disease tests two months, six months, and a year or maybe even more after symptoms show up and not just rely on the first negative ELISA test as definitive. Same goes for tests for coinfections. And don't even get me started on the relationship with insurance companies... long term treatment should be covered if there is evidence it is needed by individual patients - rather than have patients not only shell out money for LLMD appointments but exorbitant amounts for antibiotics, too.

This isn't going to change unless the focus shifts towards addressing the issue of persistence of infection and demanding more research on it.

What do you think? Do you disagree or agree? Why or why not?


I'd love to hear your perspective - as I've said, this has been a difficult topic for me, and one over which I have been divided in my opinion.

This work by Camp Other is licensed under a Creative Commons
Attribution-NonCommercial-ShareAlike 3.0 Unported License.

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0 Administrivia: New page and updates

Just a brief note for those revisiting or who are new to my site:

1) I've added a new page about the middle ground which contains transcribed notes on Pamela Weintraub during the October 2010 IOM  Q & A session. That page is: The Middle

2) I've updated the FAQ, too.

That is all.

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3 Pam Weintraub at 2010 IOM: on being in the middle

I realize that in my rush to write extensively about the Chicago Tribune's *clears throat* journalism... I hadn't mentioned what brought my mention of Pamela Weintraub to my blog in the first place, and why what she said is such an important part of gaining acknowledgement of Chronic Lyme Disease and beginning to understand the complexity of tickborne illnesses.

During the October 2010 Institute of Medicine (IOM) workshop, Pam gave a presentation and told of her own personal experience with Lyme Disease, an experience which has been written about in Cure Unknown and also issued as a written statement for the IOM.

This story - as usual - is gripping and hits me to the core, as it does many Lyme patients. But as much as that was gripping, what was said during the Q & A session afterward was more thought-provoking because I hadn't heard it before:


Lonnie K  (IOM mod) asked:

"Question for Pam: What do we need to do to find common ground and move forward?"

And Pam said:

"This very polarized fighting is the most destructive thing out there and #1 reason so many people are so sick out there and we’re still here. So many other journalists have capitalized on the sound bites of either side and the drama. For me that’s a distraction to the story. 

When I went out and interviewed many people of high expertise, most scientists working with this on a deep level were very intelligent, thoughtful people who had very nuanced ways of looking at this. And in the nuance I was able to see a path. But when you pull back out and read these articles about the controversy, it becomes shouting that drowns out the actual complexity and nuance... and work we need to do. 

I don’t know what can be done. Patients are very angry, I understand, look what happened to me with a classic case in my son and I had to go to doctor to doctor. There was such a political sense of staying away from Lyme or finding other diagnoses first. I don’t know how to heal this. I think there are people who can work together to heal this, but they’re not the people at the extremes... they’re the people in a center space. I wish everyone could get there together because then perhaps patients could be healed. This can’t be dumbed down, it’s not going to get us anywhere."

This.

This entire response that Pamela Weintraub said where the Lyme controversy can only be dealt with by those who are coming from the center space, or middle.

I want to know how to find that center space or middle, too, if that is what is going to get me and others out of this mess.

I know some of you absolutely love Pamela and she did a tremendous amount of work on Cure Unknown and help in getting the Chronic Lyme patient's story across. (You should know, by the way, that she does not use the term "Chronic Lyme" for herself, and I may follow suit, regardless of the familiarity it brings - read about it in comments here.) I also know that some of you who are reading this blog might find her to be an unreliable source of information because she is a science journalist and not a scientist, and many a science journalist has oversimplified the facts or missed a crucial piece of information that would change the entire message of their article had they published it. Everyone is entitled to their opinion, of course.

That said, I think Pam is right about this one: Fighting and polarizing this issue for years - and I mean years - has not gotten people very far in terms of acknowledgement and treatment. 

I'm glad a few bills got passed to protect doctors who prescribe long-term antibiotics - that certainly helps patients in some ways - but it is a case of too little, too late, for many patients. Including patients who should be getting their treatment covered by insurance and not selling their homes to finance it. 

How do I think we can work from the center or the middle? Difficult question. I'll take a stab at it, though.

I think it requires taking a step back and assessing where we are as patients, activists, advocates, and those standing alongside them. What are we doing? What are our goals? How do we spend our time?

It requires knowing who and what your detractors believe and why. What is at stake for them? Does all of the IDSA believe as the guidelines panel does, or do some of that 8,600 have doubts or never even really learned about Lyme Disease and other tickborne infections?

I think it requires uniting all the patients and their advocates and working toward a common goal, not twenty or two hundred different ones, all with their own personal bent.

The AIDS community was able to rally their efforts together for a cure. In ten years they ended up with a treatment that has extended their lives so that many are now living long lives HIV+; working and playing while managing their condition. And there is ongoing work on a cure, though they're not there yet.

Ten years.

We've been at this shit with Lyme for what? Over thirty years? Beginning with Polly Murray?

It's been said that the AIDS community could only get the attention for their disease because it was immediately clear it was sexually transmitted and transmitted through transfusions, whereas Lyme Disease is not (though I know there is speculation about both of these, let's put these issues aside for the time being - it's not really relevant to where this is going right now). And this may be true, but this is not a good reason for Lyme Disease and other tickborne infections to not get attention. 

The one thing the AIDS community had that the Lyme community currently doesn't have is enough commonality of direction. Each group has its own drives towards somewhat different goals (though there is overlap) and groups are not united enough towards one specific goal. Unfortunately, the one thing the Lyme community currently has that the AIDS community did not have is one select group of panelists setting the standard of care for Lyme Disease and other tickborne illnesses worldwide - and not even just the US, which is its intended jurisdiction.

If what Dr. Willy Burgdorfer says is true - that 30 years of research has produced the same thing  - nothing - and the development of new serology has to be started from scratch; if he and other researchers say that Borrelia can persist and symptoms can vary based on genotype - then what is needed is more research and for the word to get out about existing research from the researchers themselves.

Science is what turned things around for AIDS patients. Science can turn things around for Lyme Disease and tickborne infection patients as well.

I don't think anyone should have to wait for a cure to continue treatment, and as long as we have LLMDs there is a shot at getting it. But I do think in order to continue to justify the need for treatment (I know, crazy isn't it? People need treatment now!) and to make it more widespread, that the first goal should be to make sure the case for persistence in humans and its significance is beyond questioning. 

Otherwise, there may always only ever be a handful of LLMDs treating this. Is this what everyone wants for their children? For their family? For their friends? 

I'm concerned about it, because watching changing epidemiological Lyme Disease (and other tickborne illnesses) data for humans and animals together is scary. It's only going to get worse as time goes on. And then we'll have what... even fewer doctors treating even more patients? Or worse - just more people who are sick and without treatment?

Instead of beating at the brick wall that is the guidelines panel, look for Volkman and others who have rejected it. How about Dr. Luft and Dr. Barthold's new research? How about more research that's already been out there for ages that needs to be brought to light?

How about pushing for clinical trials with larger patient populations - to prove persistence in human patients, and not just whether or not specific long-term treatments with antibiotics will work or not? 

Those four clinical trials with small sample sizes that get cited ad nauseum? What if they weren't about long-term antibiotic treatment, which many medical professionals are loathe to touch? Have trials that show persistence first. Incontrovertible proof.  

Then it will be much easier to get better-designed long-term antibiotic trials done and push for research for better antibiotics and other medications. Antibiotic R & D has been incredibly behind the curve in years and that alone is going to cause problems in the future.

Heck, I'm about ready to sign up and have someone take a biopsy from me from several places - those places are hurting anyway and that isn't going to change any time soon from my experience!

Instead of tearing at your neighbor there on Lyme-whatever-group who is arguing with you about the value of detoxing and bouloke or Samento, put your enmity aside and work towards the issue of persistence. You can still make whatever choices you're going to make. But I think this one is going to be a big one to not duck out of. Because once peristence and its significance is established beyond a doubt, then all the naysayers on the Tribune and the panel and science blog and god-knows-where-else can STFU and there will be support for antibiotic and antiprotozoa treatment, where and when it is needed. And insurance should cover it, and doctors will stop getting cited and disciplined for treating.

I think this is THE issue: persistence. 

Not whether or not you need to challenge someone's posting because they said something about treatment you disagreed with, or because you want to use an herbal treatment like Buhner's or Zhang's protocol instead of antibiotics because you can't afford the antibiotics, anyway. 

All those issues? They are detracting from the main one underlying it all. All those issues will still be there as you live your life day to day, but in the meantime progress will really be made if this one issue - persistence - is worked on. 

And all those issues? A lot of those issues are bound to become non-issues if everyone's access to treatment improves and more research is done to develop better antibiotics and other technologies to stop persisting Borrelia and other infections from wrecking havoc on your body. And if it turns out that there is an immune dysregulation process going on, that will probably also be confirmed in the process of looking at persistence. But it isn't going to happen unless research is encouraged in that direction.  Otherwise, it's just going to remain someone's seemingly unsupported speculation of some panelist's wet dream of what is happening in "Post Lyme Syndrome" until then.

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0 Including the Middle

This was passed on to me in email. The original author's name is Lon Sarver, so credit goes to him and not me. 

Including the Middle

That there is no One True Way does not mean that all ways are equally valid, or that there are no false ways.  Similarly, there may be no one thing that works for everyone, but it does not follow that therefore, everything works for someone.  There are things that don’t work for anyone.

Just because you are a free adult, and do not require my consent to engage in whatever it is that you do (assuming it doesn’t impact me or mine), this does not mean that I have to agree that whatever you’re doing is a good thing.  Even less does it mean I have to approve, or withhold criticism.

I can’t tell you that you don’t like or enjoy something.  I can tell you that, in my experience or understanding, something is actually, objectively harmful.  I can’t tell you that you and other consenting adults cannot do whatever it is you’re consenting to do, but I can object when I see collateral effects impacting me or mine.

You see the distinction, yes?  I’m not arguing tastes, or debating rights in the abstract.  I’m questioning whether or not you’ve thought this through, whether or not you understand the unintended consequences of your actions. 

Consent is not a magic spell to negate ill effect, nor is tolerance or pluralism a barrier that prevents what you do over there from affecting me over here.  Hell, the more interconnected society becomes, the more likely I am to be impacted by people I never meet.  We can argue the extent of this, but not (I think) the fact of it.

So here’s the deal:  I won’t tell you what or who to like, or what’s best for you.  I won’t ask you to tailor your tastes or preferences to defer to mine.  I will tell you if I think you’re factually wrong, or if what you’re doing doesn’t seem to match up with the reasons why you’re doing it.  Feel free to tell me to butt out.  Hopefully, I’ll do it with grace.

If I’m saying that what you’re doing is somehow harmful, trust that I’m not judging you on some measure of Good or Evil, Worthy or Worthless.  Try and take it in the spirit of questioning the effects of your actions, not your intentions.  I’ll probably be a bit more stubborn, here, in proportion to how much I feel that my life is impacted by those effects.  We may not agree on that, but at least let’s agree on what we disagree about.

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Any thoughts on this? 

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