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Lyme disease and "cyst busting" medication


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Someone I care about has been diagnosed with long term/chronic lyme, probably acquired in utero, and is taking medication to "bust cysts" that is causing significant anxiety and personality changes.

 

I'm trying to learn more about this condition.  Tell me what you know!

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Oh, ouch.

 

The short story on cysts in layperson’s terms, as best I can remember: sometimes when treating Lyme disease with most classes of abx, the spirochetes will form cysts to protect themselves. “Cyst-busting†is the dreaded part of treatment on which a patient takes a very specific type of abx (often flagyl [shudder]) to break open the cysts, and make the spirochetes come out so they can be killed by the abx. Usually a patient will be taking two different classes of abx at once to aid in this. Depending on one’s doc, a patient might pulse the cyst busters a few days a week, or month, or wait till further into treatment.

 

For me, flagyl was horrific. I had terrible side effects. I switched to a different cyst busting med, whose name escapes me at the moment. That was very slightly better.

 

And - even more importantly to your question - as a chronic Lyme patient undergoes treatment they will have a Jarrisch-Herxheimer reaction. Or herx. As the spirochetes die, they release toxins. And/or the immune system suddenly “sees†them and goes into overdrive. (Lyme sometimes has the uncanny ability to cloak itself from one’s immune system, until it dies and then suddenly the immune system goes into overdrive.)

 

A herx can feel like the flu. Or all the crazy Lyme symptoms one has ever had, rolled into one. Or a progression of those symptoms one at a time. Oh, it’s misery. Some people talk about Lyme Rage. I’ve never had that, but for sure chronic pain causes personality changes. Lyme treatment that is long and miserable - well, it’s hard to persevere.

 

The best quickie resource for learning Lyme stuff used to be, IMO, called something like The Complexities of Lyme Disease: a Microbiology Tutorial. Thomas Grier, maybe? There are newer things but that will explain anything I said above, in clearer terms. It also helped me understand why treatment was so interminably long, as opposed to treating something like strep. My DH would highly recommend reading it, too, for any friend of a Lymie.

 

Amy Tan wrote an essay about life with Lyme, that was a quick read, too. It was a different perspective. I remember feeling so relieved when she described olfactory hallucinations - gosh, I thought I was crazy prior to that. :)

 

I’m sorry your friend is going through it. They must have a good LLMD, though, to have reached that point in treatment. That’s excellent.

 

It’s a hard slog. It took me years, but I’m well, though I still see my LLMD at least yearly. If I can answer anything else, don’t hesitate to reach out.

Edited by Spryte
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Can I ask, does everyone who has antibodies to Lyme (I think that's how they diagnose it, right?) but has never been treated have symptoms?  Is it possible to have Lyme antibodies and no symptoms, either because your body fought it off or because it's dormant?  Is there ever a situation where someone decides that the treatment is worse than the disease?

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Well, I had remitting and relapsing Lyme for 20+ years. So it can be dormant. We did not know it was Lyme at the time, but at age 11 my mom took me to the doc for what was obviously a bulls eye rash, though no one really knew about those then, and I had clear symptoms immediately after. But Lyme wasn’t a thing then. So no diagnosis. But I have that medical record, so we are fairly sure. It can definitely remit and relapse.

 

However, I think it’s more likely that someone has no antibodies to Lyme and still has it, than the other way around. Once one has had it for awhile, it (the spirochetes) learns to hide from the immune system. So - no antibodies. I did not have any by the time I was diagnosed. I was diagnosed by PCR, a DNA test for spirochetes. Later tests, once my immune system recognized it, were positive. I was extremely ill by that time.

 

That’s a rambling way of saying yes it can be dormant. But eventually it will stop remitting, and one will just spiral down. And down. Treating it is the only way to win, I think.

 

Have you watched Under Our Skin? That might help, too.

 

It’s a crummy disease.

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