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.
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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.
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| 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.
