Thursday, April 12, 2012

0 Commentary: Antibiotics Are Only One Tool - I Want Others.

A few weeks ago, I commented on a Wall Street Journal blog post about chronic Lyme disease. Since then, I have been reflecting on this response to my comments there:
"Camp Other – The cure for chronic Lyme is known. If you want a sustainable, long term cure, you can gamble on long term antibiotics, or can you take an alternative approach, which consists of doing between 20 and 50 different things, including Low Dose Naltrexone. Yes, they get you to a cure, at which point a good alkaline diet, oxygenation, vitamin D, etc etc etc should maintain health.
 Easier said than done though. Even when you cure your Lyme, you need to maintain the healthy diet, and some of the supplements that got you there. You also want to do genetic testing for things like methylation, as part of treament and post-cure maintenance. I’m certainly not banking on the Viral Genetics research. It could be many years before that turns into a drug we could take. I already know people who are fully cured and back to their old lives, so it is curable with current knowledge."
And I also sadly know people who are not fully cured with current knowledge.

Reflecting on this, it's not an easy statement for me to make - but I don't think the cure for chronic Lyme disease is entirely known.

If it were known, then all the patients I know would have had the treatment they needed and would be better now. But some of them are not. And I don't think it's some personal failing that they aren't or that they haven't done the right things - it's that their individual condition is different and may require different treatment - including treatments which haven't even been developed yet.

I can see that long term antibiotics, some alternative medicine, or some combination of the two have helped a number of people improve their condition and alleviate symptoms. Many have gotten their old life back. But it's never been guaranteed that any of these treatments will work for everyone.

 Even the Lyme disease patient support groups have often repeated the statement, "Every patient is different," and Polly Murray herself stated in her book, The Widening Circle:
"I am struck by how Lyme disease never seems to act exactly the way it is supposed to, how each individual seems to respond differently to the spirochete."
I'm a fairly pragmatic person, so my basic position on using antibiotics to treat persisting symptoms related to Lyme disease has been that if they might offer relief and improve your quality of life, if nothing else has helped, and a doctor has agreed to this treatment - then try them. Use them, while being aware that there are risks in taking them longer term - and note that perhaps there are even unforeseen consequences of which scientists are not yet aware.

But while I've been an advocate for the use of longer than standard courses of antibiotics in the subset of patients with Lyme disease who have persisting symptoms and I feel they saved my life, I have never wanted that to be the end of the story. Because it seems to me that even if they do help, if they don't cure everyone then more research is needed for effective treatment which helps all patients.

If there is evidence that comes out of Embers' Rhesus Macaque study - along with others - that Borrelia burgdorferi s.l. does have a persister cell phenotype as part of its pathogenesis, then more antibiotics may only be a maintenance treatment at best. What would really be needed is a treatment which reactivates the dormant persisters and kills them - something which antibiotics alone cannot do.

Persister cells are tolerant to antibiotics. So in theory, it may be that antibiotics of some kind plus a metabolite would be needed to eradicate any remaining spirochetes.

In the long run, I'd like to see more effective, less expensive treatments of shorter duration for my condition.

I'd like to avoid taking antibiotics out of concern for my poor digestive system and my palate, which is disgusted with bitter tasting substances rolled into barely swallowable pills in general.

I'd like to avoid the strange side effects which I have experienced which, thankfully, in most cases abated after the first week or two of treatment - yet they inexplicably seemed to be those which are less common to experience and more difficult to cope with.

Antibiotics are great tool and have helped a great number of people - and they have helped me, too. But I think it's time to look past long term antibiotics alone and push for research on other avenues of treatment.

Researching them doesn't mean abandoning antibiotic use entirely - they are scientifically proven effective against Lyme disease and its coinfections. Researching other avenues means investigating what else can be done to help patients improve their quality of life and to find something that could cure them in less time. It means exploring more options, not fewer. It means more patient freedom, not less.

 If at one point I seemed to strongly advocate Viral Genetics' VGV-L candidate for the treatment of chronic Lyme disease, it isn't because I am certain it will work. I don't know for sure that it will. I am hoping, though, that it will help at least some portion of those of us suffering and will not have serious side effects.

And I'm hoping it marks the beginning of more research into different ways to treat patients who are suffering with persistent symptoms. The antibiotics will still be there if you need them - and after how much of them I've already consumed, I'd rather not need them. I'd like to try something else if I can. A round of Buhner's herbs, perhaps - or perhaps something entirely new.


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