HealingWell
Search Close Search
☰

the herx from hell

Support Forums
>
Lyme Disease
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 1/10/2015 5:07 PM (GMT 0)
I had a herx begin on 20 Dec. that was wild.
It ended up landing me in the hospital in PCU from 2-4 Jan., after a wild ride in an ambulance with a BIPAP mask breathing for me. I was in respiratory distress, on the edge of respiratory failure when the EMTs got to me.

It's a long story, so the short version is:
10 days of hard neuro and musculoskeletal symptoms with hardly any sleep, then 2 days of really bad neck and back pain and a cough that just kept getting harsher, drier, and harder all the time till I finally was having trouble moving air. Went to the local FD on New Year's morning and talked them out of a breathing treatment and went home. Next night, I simply couldn't breathe.

2AM on the 2nd I called 911. Only way I could move air was on my hands and knees. My lungs sounded like Velcro.

The BIPAP mask opened my airways and reinflated my lungs, and at the hospital, the party began...
They gave me Tamiflu despite a negative Influenza A+B swab.
They hung a bag of Zithromax "in case it's pneumonia" despite a clear X ray and normal temperature.
They gave me massive doses of Prednisone "for the COPD exacerbation" despite the fact I've never been dx with COPD.
My Troponin was thru the roof, yet they didn't call my cardiologist.
I was in acute renal failure and they didn't know why.

On day 3 I was judged well enough to go home, so they loaded me up with steroids (inhaled, IV, and oral) and pushed me out the door.

What a hoot.
Posted 1/10/2015 5:13 PM (GMT 0)
Well, the good news is that 2015 can only get better for you!

Seriously, so sorry you had to go through this. Hope you are on the mend now.
Posted 1/10/2015 5:55 PM (GMT 0)
Poor you! What an ordeal! I really hope you are on the mend too.
Posted 1/10/2015 5:59 PM (GMT 0)
achievinggrace, the art of my life has been to take a big steaming pile of horsepoop and grow daisies in it...

So I leveraged the whole thing. I got a followup with my "normal" "insurance" PCP two days after discharge.
I pushed for pain coverage, pulm consult, imms consult for allergy testing, a bunch of rescue meds, prns, and thrush prophylaxis, and simply made sure that I got my needs met. The way I set it up, if I have another herx like this one I'll be able to stop the symptoms in their tracks and detox my way out of it. So insurance covered all that.

They inadvertently hung Zithro and accidentally cured my joint pain temporarily! which was good info to share with my LLMD. We added Azithromycin to my abx regimen yesterday, so that makes three now, and I have a renal-dose ACE going now and other protections in place.

I looked at this whole thing from onset forward, and determined it was probably a bacteriophage bloom triggered by my herx. I had just started treatment about 5 weeks before this happened and started off with a strong abx intervention, so the big first herx came right on schedule, basically.

At the time we started treatment we didn't have all the tests back yet; as it turns out I've got raging HHV-6, Chlamydia pneumonia, and CMV, all of which have pulmonary consequences. So between coinfections and the bacteriophages in dying Bart/Lyme bugs, I sustained quite an attack. As they say, the first herx is often the worst, so I hope things will get easier now. I'm on Omnicef, Minocycline, Grapefruit Seed Extract, and now Zithromax, so we have some serious coverage going now and it's especially good for a Lyme/Bart/C. pneumonia kill.

They had me so saturated on steroids I was borderline kooky by the time I got home, so I started a drastic steroid taper and was off all inhalers, steroids, etc in 2 days. I got the pain under control after a day of vomiting (yesterday), and am back on my probiotics.

I managed to get a 1 hr appt. with my LLMD on Thrs., which worked out great. He was able to review all the labs and studies and records from my hospitalization, drew the same conclusions I did, and we moved forward. All the consults, testing etc that I can get will be useful to him, especially the allergy testing!

So, yeah, a tough holiday season, but in the end all for the good.
Posted 1/10/2015 6:16 PM (GMT 0)
SF—

Good God you have been through the ringer. I am glad your recovery was rather swift and you are in charge again (as much as you can be).

Aren't you on an anitviral? That was one of the first things my LLMD—checked me for about 6 viruses. We waited to see results on antivirals before she started lyme & co. tx… I have promoted the same here on the forum multiple times—I don't think everyone agrees with me but I still think it's important to clear out that kind of stuff to reduce the complexities and increase the safety and efficacy of tx.

So, I wouldn't classify that as a herx—but more of a breakdown. Overload. But I am not a doctor—I just play one on the interwebs. ;)

Keep up the diligence and let us know how things are going!

-p
Posted 1/10/2015 7:34 PM (GMT 0)
OMG! I am so sorry, That was horrible.
I am so glad to hear you are doing better!
I have had a real hard time breathing these last few weeks, so I kind of relate.

So did you have any issues with the hospital giving you steroids? I can not even use a steroid based inhaler's due to the reaction I get.
Posted 1/10/2015 7:39 PM (GMT 0)
I think you're right, Pirouette, I told the LLMD that the massive herx was the trigger, but the cause was probably bacteriophages or an unknown immune storm of some kind. He agreed, based on the way the symptoms rolled out, that I was herxing hard, and then because of that the bacteriophages activated and dumped a bunch of toxins that hit me right in the lungs.

It was kind of a near thing, really- if I hadn't called 911 when I did, my wife and granddaughter could have found me dead in the morning from respiratory arrest. Which would, you know, suck really bad.

I have another panel of tests to do for a more complete picture of the viral infections, but the recent steroid "carpet bombing" campaign by well-meaning docs just pushed that test back by a month.

Besides throwing up all day yesterday, I feel pretty good since getting home, and I'm heading out to the gym right now for a walk on the treadmill and a sweat in the sauna.
Posted 1/10/2015 7:48 PM (GMT 0)
needforspeed,

I learned something as an ER nurse early in my career, which is that sometimes you have to do the unpleasant short term intervention to get over a crisis.

The only way they were able to keep me breathing was with a big steroid intervention. That's just exactly the opposite of what I would preferred to see, but I was in no position to argue with a machine breathing for me.

In retrospect they might have been able to stop the pulmonary crisis with a bag of IGG, but I wouldn't expect an ER doc to demonstrate that kind of insight. They just wanted me to go from blue to pink and they did what their training said to do. I tapered off the steroids as soon as I got home, and have had no ill effects, so I'm grateful it went the way it did.

At least they honored my LLMD's orders and kept my Lyme abx going while I was in-hospital, that was nice of them.
Posted 1/10/2015 7:50 PM (GMT 0)
I think you are right. My 19-yr old cousin died of the flu and a bacterial overload. Mucus had built up in his lungs until one morning he suffocated. Very dangerous. It's so good that you are on top of this.

I suffered insane chronic sinusitis and bronchitis for 13 months throughout 2013—in/out of the ER and Urgent Care 8-9 times. And they did the same pumped me up w/ abx and steroids. The breathing issues let up minutes after the steroids but I got so much sicker after each visit. Turns out it was not viral or bacterial but fungal in nature. A couple doses of antifungals and I was much improved.

And it was the reaction to all those courses of abx and the suppression of the immune system w/ the steroids, which brought on very specific lyme & co. sx that I FINALLY dx myself w/ lyme after 15 yrs of searching. You can't write fiction this good. ;)

GO EASY with the heat and the sweating and the activity… you don't want to overload your detox systems either. Hope you're feeling better soon. Let us know.

-p
✚ New Topic ✚ Reply