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DreamingPanda

Relapse or Rifampin Herx? What to do?

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Hi everyone,

Have any of you had a dramatic regression/increase in symptoms from starting Rifampin?

To give context, I’m 22 and had untreated PANS for eight years.  I got diagnosed at 19 in 2014, had two IVIG’s, a tonsillectomy, a year of steroids, and I went into complete remission by the end of 2015.  I got Lyme in 2016 and relapsed, and I’ve since had another IVIG and have been treating Lyme and co-infections with an LLMD.  I didn’t start Lyme treatment until December—nine months after the initial infection.  I also tested positive for Babesia and Relapsing Fever.

I was doing really well this summer and was definitely getting much better, but in the last few weeks, I’ve gone downhill fast.  When I started Rifampin two weeks ago (in a MWF pulse dosing), it dramatically accelerated my decline.  I still have an occasional, pretty-good day, but most of the time, I’m so depressed I can barely take care of myself.  My word-finding issues have returned, and I speak nonsense frequently.  The atonic seizures (one of my most severe PANS symptoms since 2014) have come back, too.  I feel confused and disoriented often, with periods of time when I feel dissociated and really far away from everything around me.

I’m having all of the symptoms that I get when all breaks loose with a full-blown PANS exacerbation/relapse.  Yet my parents claim I don’t have the same “look” as when I’m really at rock bottom.

My LLMD thinks I’m herxing, but my psychiatrist thinks it sounds more like PANS (purely autoimmune) and that Rifampin is making my psych drugs (Wellbutrin, Lamictal, and Seroquel) less effective.  My LLMD did warn that this new Lyme protocol could make my mood symptoms worse, but why so many other symptoms?  So far, my other herxes have never lasted as long as this, so I’m afraid this is an autoimmune thing again.  I'm detoxing with Burbur and Alka-Seltzer Gold, but any reduction in symptoms never lasts long.

Has anyone else had a similar experience with Lyme treatment, and especially Rifampin?  If so, what do you do to make this better?  I’m so tempted to do a Prednisone burst, because that’s almost always made PANS symptoms go away, but I know that’s a bad idea with an active infection.  But how am I supposed to keep living like this?

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Does your psychiatrist believe that there is such a thing as herx?  Despite the good documentation for this phenomenon as far back as when they were treating syphilis with mercury (!), some doctors think herx is hogwash.  If he does actually feel that way, he has no choice but to explain your recent symptoms another way.  They way he did explain makes even more sense if he is a strong advocate of SSRIs, which is typically how psychiatrists lean.

I personally would go with your LLMD's opinion, and if it is herx, then (if you can bear this thought), celebrate, because it's good news.  It means you have the tiger by the tail.  Hold on!

We used rifampin for my son's ehrlichiosis (another tick born disease), and if I recall correctly, we had a herx.

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Thanks so much for the encouragement!

I don't know if my pdoc is a herx non-believer, though he's the first one to admit that the intricacies of treating late-stage Lyme are out of his wheelhouse.  He's very against SSRI's for me, as they've always made me worse, but both he and my LLMD agree about increasing my Lamictal.

I guess I'm just getting discouraged, because I'm nine months into Lyme treatment and was so much better a few weeks ago--maybe even the best ever, and it lasted most of the summer.  But in the last month, I've suddenly gotten worse and worse and am barely functioning by this point. Is this normal?

Usually my herxes last at most a few days, are lessened with detoxing, and then I'm better than before I herxed.  I'm not taking any antibiotics this week, but I'm still continuing to go downhill.

Could someone have a month-long herx?  Or is the bacteria coming back?  I've not been having the flu-like symptoms, joint pain, and fatigue I normally get in my herxes.  It's all just these debilitating psychiatric and neurological problems.

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oh - I didn't appreciate that it was a month-long herx - thought it started with the rifampin 2 weeks ago.  So if it has been a month of steadily bad, I would be suspicious (based on our ehrlichiosis experience) about all of that not being a herx. (We have had similar experience to you, where herx is really rough for a few days, and for us, all over after a week or so after which DS is better than before we started).

Especially since the symptoms seem different than your own typical herx experience, you might investigate the side effects and interaction lists for rifampin and see if you might be having a reaction to it.  Even with the extra complication that it all started before the rifampin, I wouldn't hesitate trying to convince the LLMD to agree with cutting the rifampin out at least for a short time especially if you have given this another week and it hasn't improved.  But there will be a tricky thing interpreting whatever change you might see then.  Perhaps the LLMD has seen longer herxes with lyme - I have to qualify here that I don't know lyme.

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