There's a lot of ground to cover, and it may take a while for me to firm up an outline or structure for the posts, which is what I'm working on bit by bit. In the meantime, other topics are a bit easier to write about because they are editorial in nature and not so dependent on citations.
I decided I should explain some of the thinking behind this cryptic post a couple days ago, because some people might have wondered what I was talking about and one person marked "???".
So, I'm going to take each of those two statements in that cryptic post and write more about them, starting with the first:
Just because someone is right about something, doesn't mean they are right about everything.
Some time ago I posted something I received in email about including the middle. This had nothing to do with what I'd posted about Pamela Weintraub's statement, to be clear on it, but it made some valid points.
In "Including the Middle", I like to cite this excerpt:
"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."
And I think this is true of treatments for Lyme and coinfections.
I've noticed there's a tendency for some people to think that if some part of a doctor's treatment or protocol has helped them regain their health or show progress that they assume that the rest of their treatments or protocols are likely to help to or have a well-reasoned basis behind them.
I can see where I'd want to hope that this is the case, but in my experience, this hasn't necessarily been the case.
I'd have to say that two of the biggest frustrations I've experienced being a Lyme/coinfection patient have been:
1) Being treated dismissively by certain people - especially medical professionals who do not understand or validate the existence of my condition - and
2) How hard it is to figure out what the best way is to treat my condition and what the truth is about it.
There is a ton of information out there to weigh and consider. It gets to the point of information overload for me, and I suspect that this is the case for many other patients trying to regain their health. Because of this, I think the fallback position is simply to trust one's LLMD to make treatment decisions.
It's not the worst approach I can think of in many cases. I might be biased because I think my LLMD is pretty good, and makes sound treatment decisions based on the research available out there.
Even though I mostly trust his treatment approach, because I am who I am, I do ply him with questions now and then. Sometimes I have to stop my current treatment and try a different approach. Then we work together to find that next step.
But that isn't the full story for treatment across the board for everyone in every situation. In general, there is so much that remains a huge unknown about Lyme and coinfections that a lot of treatment plans practitioners come up with (both allopathic and alternative) are purely experimental.
This is not to say they are all wrong. But it's to say that we have no clear way of knowing what really works for which group of patients, and the repeated mantra I have seen in the Lyme patient community has been that everyone is an individual when it comes to treatment.
As it stands, individual research is often the approach du jour, and there is no one guiding the process. Outside of consulting an LLMD, everyone comes up with their own method of deciding what they are willing to try and not try, do and not do. And this wouldn't be so bad if it weren't for the fact that people make decisions which are not informed, not well-researched, and can lead to Things That End Badly.
How does one go about changing this state of affairs?
Is it a worthwhile pursuit to try changing it?
I suspect that if one were to begin seriously tracking the data on certain groups of patients, that a pattern would be found as to which treatments are more effective for certain cases and that could be measured and quantified. We might also find which ones have been harmful for certain patient groups.
Right now, I don't see so much of this work going on and it would be to the patient community's great advantage if all the LLMDs began to collectively pool this data and share it (while protecting patient privacy, of course) with us. Then we'd know what is working and what is not - or at least get an idea of it.
If a bigger number of patients try the protocols that are known to work better over time, then more successes can be documented within the community and also for institutions outside of it. This could only be an asset for everyone.
I'd also like to know what isn't working for patients on the whole - neither showing improvement nor cure - and dump it. It is just as important to report side effects and treatment failures as it is to report benefits and success.
Of course, this is difficult to test when someone has a condition which waxes and wanes and has cycles, isn't it?
I could be getting better because my Borrelia has gone into a dormant state, or I've just finished having a Herxheimer reaction and now that that's over I'm beginning to feel better. Or I changed antibiotics recently, and that helped my symptoms to improve. What is the true cause of my improvement? Do I care why, or do I only care that it happened?
Well, I do care that it happened. I want out of hell, that's to be expected. But caring why it happened is more useful in the long run because then I know I'm on the right track and doing something that works. I just need to prove it, and it would be good to see other people with my condition and medical profile reproduce my results. Then we know we might be on to something.
I'd like to see treatments based on something that is quantifiable and measurable across the board where we can see there are results, and not just have it be hearsay that a few patients got better by trying x or y protocol or herb on their own or under Dr. Foo's care or whatever one wants to fill in the blank there. Otherwise I could just be throwing money at something that is absolutely useless - or worse, taking something that isn't good for me.
Even better would be to find someone who is totally independent and conflict-of-interest-free to be able to repeat and confirm treatment data using the same patients as well as new ones. Someone not involved with IDSA, ILADS, or any other group which potentially has a stake in the outcome. Because then from the outside, once the Lyme community's suspicions are confirmed and already existing data about tickborne infections are proven by someone independent of all the issues involved, then more credibility is achieved.
Given that those within the community are the most invested in the outcome of any study, the best source of credibility would come from any group which had proof of the problems that dog us who are neutral about the outcome.
Perhaps after they did their research and got the results, they would be anything but neutral. One could hope...
I'd also like to see more energy put into the drive for requesting and requiring proof that something works, and questioning the use of something novel and newly marketed (whether by a supplement company, another patient, or a doctor of any stripe) for its effectiveness and safety.
It would be refreshing to see more people openly questioning in general, because otherwise how do I know what their individual process is in deciding how they made a treatment choice one way or the other without asking questions? Both for and against? Knowing about their process would help me and other patients to make informed decisions.
Right now, I'm still tripping over seeing someone claim on a given support group that Lyme Borrelia cysts last forever and can survive fires, and a sad number of patients worrying they will never get cured because of this statement.
To them I have to say this:
If you don't like what you are hearing, ask yourself these questions first:
1) Is what I'm hearing true?
2) How can I find out if it's true?
Then work on figuring out what a reliable source is for those answers.
I make you any bet the source is not the person making the original statement or claim. Look elsewhere.
(In this case, you might want to begin with remembering what I wrote about Syphilis and Malaria, and look up the viability and temperatures at which Borrelia dies.)
Conversely, I think that if something sounds too good to be true, that if you like what you're hearing, if it raises your spirits and gives you more hope than you've ever had before... Then ask yourself those same two questions and figure out what a reliable source is for those answers.
Otherwise, you could be chasing down something that isn't worth your time, money, effort, and most of all: your health.
* Note: "He's" and "his" are being used as general pronouns here, as I get tired of writing "S/he's" and "his/her" all the time and think it is harder for people to follow the flow of writing with those in it. Apologies to the feminists reading along who prefer me to use "she" and "her" instead. I advocate English coming up with a gender neutral pronoun like other languages have.
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