Share herxing experiences

[tainabell]

Hi all,

I was hoping to get a little survey/discussion here going about herxing.  I've read what a herx is from numerous different sources, but maybe due to stubborness or brain fog (thanks, Lyme disease!) I just can't seem to nail down specifically what a herx is or how long it lasts.  I'm always jealous when people say, “Oh yeah, that really made me herx…” because when I start to have amplified symptoms I never assume its herxing, I always just think my disease is getting worse. 

Here's what I was hoping people could provide to clarify.  It seems like we all herx differently, so what I'm looking for here is a spectrum of what herxing means to different people.  (Hopefully, this will also be helpful for others on the board, so this doesn't just become an exercise in my own narcissism….)

So…can people who feel like it share….

An EXACT description of a herx symptom they had in the past (ie, pain in right shoulder, all over body aches, itching, etc.)

What the duration of the herx was?

How you knew it was herxing, not just the progression of the disease?

If you have herxed a lot, in a lot of different ways, then maybe just choose one or two specific examples…I'm just hoping to nail down the pattern of a “typical” example or a herx, no matter how atypical they may be in general, if that makes any sense.

Thanks in advance to all the people who response to this crazy post. 😀

 

[Joe M]

[user=854]tainabell[/user] wrote:

How you knew it was herxing, not just the progression of the disease?
 

That's the million dollar question.  Michelle and I couldn't tell, and because of the unrelenting nature of the symptoms, in the end it didn't really matter.  An unrelenting herx or unrelenting disease both have inflammation and therefore potential joint damage.

John McDonald told me he could induce various predictable herx symptoms by the kind and dose of antibiotics he took as part of the Marshall Protocol.  Maybe he will chime in.

[Trudi]

Hi Tainabell–

My herxes showed up in increased joint pain, fever, and general achiness.  Of late I haven't had the fever and general achiness, but I do get increased joint pain, especially of the knees and ankles when I take the full dose of treatment.

I “think” one of the ways you can tell if its a herx is that if you back off the treatment and the discomfort lessens.

I understand your confusion.  Only after taking a variety of treatments with a variety of dosages and noticing how my body reacted did I start to recognize what a herx is.

Hope this helps somewhat–

Trudi

Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?

[Kim]

Hey Tainabell,

A bad herx for me is revisiting every joint that has every given me problems in the past, along with major fatigue, and it's very migratory…..may be knees and spine one day and the next day neck and shoulders.  My LLMD doesn't like severe herxing (bless him) and says to back down on the dose until it's tolerable herxing and when you plateau to move on to the next rotation of abx.  For me, Flagyl is the drug that really got my attention.

[lynnie_sydney]

Taina – mine started two weeks after I first started taking the mino. I was lucky in that the major herx response lasted only 6 weeks for me, with something different as each week came. This is how it started for me:

transient and migrating joint pain all over my body. This had never happened all at once before. And it seemed to be happening in a very structured way, moving from the top to the bottom of me. I started to feel very fatigued and also slightly nauseous.

I have taken this from my testimonial which describes the whole thing I experienced in more detail if you're interested (link below). I journalled it as it was happening, so had a good record. And I was always absolutely certain that it was a herx – so really welcomed it. Lynnie [/size%;”>https://www.roadback.org/index.cfm/fuseaction/community.display/display_id/490.html[/color]

Be well! Lynnie

Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

[tbird2340]

Excellent question / topic!!

For me, I personally have NO idea if I am herxing or if it's just the disease… I'm lucky in that I am not THAT bad to where any pain has really been debilitating (yet, knock on wood)..

So for me.. It's truly hard to tell! I do know that when I plant my butt on the couch pretty much any time in the evening I am almost dead out (fatigue).. Some days are a lot worse then others so maybe that could be herxing?

I also have migratory pain here and there, off and on as well.. Who knows..

[tainabell]

Thanks for your replies, everyone.  I think it is hard to tell what's what here when it comes to herxing, especially when it comes to a disease with weird symptoms like Lyme.  I'm starting to think that the nausea is part of my herx, but not sure completely.  Also….I'm having pain in my knees but only at night, which is really weird.  Its pretty much gone by morning.  The knees thing really scares me though, because I already have irreversible joint damage in a couple of my fingers and I just can't imagine how bad it would be to have it in my knees as well.  :doh:

Also, really, the reason why I started this post is because yesterday I had the most awful attack of itching I've ever had.  I mention this because this really falls into the “is the disease worsening?” or “is this a herx?” category for me.  I am so so fortunate that the hives I have on a regular basis don't itch, they burn slightly with contact, but thats all.  So yesterday when I had this sudden onset of itching it came with a panic attack like “Uh oh, are they going to start itching now, because if they are I'm going to go crazy from it?”  But then I thought, well, maybe the itching is a herx, and maybe its shortlived. 

Today the itching is a little better but my hives always subside in the morning so who knows?   

Thanks again for responding. 

[klogan]

My rhuemy thinks that herxing is really the immune system being catapaulted into overdrive – he's ambivalent about whether it's a positive sign or not. When I doubled my antibiotic dose, I had an immediate reaction of brain fog, achiness, then swelling, pain, fatigue, depression etc. I backed off the antibiotics, but the entire reaction took months to clear up. I think the minocycline sent me into med-induced lupus, so that is probably one reason it took so long. I got lots of miscellaneous preposterous symptoms, like blisters on my fingers and  toes, ringing in my ears, rashes, flashing lights in my eyes, indentations in my fingernails, and so much more!!!!

The bottom line is that I think too much herxing can be bad for you, not to mention disruptive.

The good news is that I'm way better now, I'm on 50mg doxy MWF, and I'm better than I was before the weird reaction. I increased the antibiotic to tackle a flare (poor idea!!) and now my flares are much milder.

Did the herx help? Did the antibiotic help finally? We'll never know. But things worked out okay for me, so that's good.

[ideamktg]

Every so often I have very bad nausea, fatigue, Raynaud's kicks up, feel cold all over, and have a weakness that does not go away until I go to bed, sleep all night and the next day I am ok. 

 Of course, I am old, and maybe it is just aging.  I do not know if these times are herxing, but it occurs at times when I don't want to give in to it, but have to. I don't think I would like it if this lasted 6 weeks or so, as someone said herxes lasted for them.

_____________________

Nancy Blake, SD(CREST) since 2000, age 77

[Mumof3]

For me I get a lot of muscle aches or my joints bother me. Everything is migratory though and nothing seems to stick around. One day my knees will bother me and the next they'll be fine. Another day it might be my hands that are stiff. I also get headaches and fatigue. And I had a bit of nausea in the beginning. It is very strange. I can feel like I've been run over by a bus one day and the next day I have no symptoms whatsoever.

[Lynne G.SD]

Hi Tainabell;
       Sometimes my herx was something akin to being hit by a freight train.Too tired to move,itchy,rashes,nausea blurred vision and even partial loss of hearing.Other times I was just tired or itchy.The only way I knew it was a herx is that it would go away after not using any antibiotic.After a few years there is hardly any from the mino but the Zith still packs a wallop.Thank God I only take one dose  every two weeks.

[mommaof2princesses]

Hi Tainabell,

Great idea for a post! I am stil ltrying to figure this out for myself. Since I started taking the mino I notice that some days I am ok, other days (like today :(… sore hips, sore ribs shortness of breath extreme fatigue, some heartburn and bruning in throat recently, very achy, very cold all over, itchy dry skin, headaches, sinus pain (hmmm interesting as I had a staph infection in my sinuses last year) brain fog, nausea at times no appetite really I just basically feel like a piece of roadkill most days :sick: I have only been on the mino for a few weeks now so I am hoping that this is all a good sign and that it lets up soon (I am only on 50 mg Mino MWF and feel this cruddy, I can't imagine if I was on 100mg every day:shock:) The fact that I feel crappy all of the time definitely leads me at my worst felng moments to question if this is working or if I am just getting worse, but there are a few days in there (few and far between lately!) where I feel decent. I went for IVs in January and 2 weeks afterwards i had the best week that I have had in years I felt great, no symptoms and had energy (I wouldn't mind another round of clindy!) the only problem was that I couldn't handle the full dose of the ivs either lol…

Oh yea and my newest most worrisome possible herx related symptom, swollen painful lymph node in neck… I will feel TERRIBLE at night especially the lymph node and I have noticed its really bad the days I take my Mino and then the next morning the achiness and everything is gone. That is what makes me assume is all a herx if the disease was progressing (God forbid!) then I do not think it would improve and wax and wan th way it does…

[tainabell]

Great answers everyone.  I'm really hoping I am herxing now….I was doing so much better until this week and then boom. 

Lynne – I feel you on the being hit by a freight train!  Well, not quite that severe (although I've never been hit by a freight train).  Somedays I'm just glad I work from home, so I don't have to face people. :doh:

Momma – before the severest onset of my disease I had very mild swollen lymph nodes.  So mild I barely even noticed them and they came and went so everytime I'd try and show them to my sister-in-law (who is a nurse), they'd be gone.  Might be another sign Lyme is the dx for you.  Sorry yours are so severe though!  That sounds like no fun.

[Lily A]

Hi tainabell,
I am glad that you are asking these questions and getting such great and detailed answers.
Here is my story:
I started mino on 1/29/09.  100mg 2x/day.  I have  SD crest.  Prior to starting mino. my symptoms were severe Raynauds with finger ulcers and puffy swollen hands.  The other meds  I am on are : procardia 30mg., revatio 20mg. 2x/day, aspirin 81mg., fish oil 2000mg, probiotics,and prilosec otc.    
2 weeks after starting AP I started getting headaches gradually incresing in severity, next came sinus pressure in my face followed by extreme muscle soreness and spasms in my anterior and posterior neck muscles as well as down my thoracic spine.  It became really difficult to even hold up my head.  The muscle soreness extended to my calves and had joint pain one hip.  I also had a lot of rib/ chest pain especially of my intercostal muscles (btwn the ribs)   I was incedibly fatigued!
It became very difficult to get through the day and I was taking 800mg. of motrin 3x/day.  Sleeping was very difficult and I woke up in such pain.  The skin on my back was very sensitive and I thought I might have shingles.  
After about a week and a half these symptoms gradually began to improve a little and then I lost all sense of taste after four days of that I began to get mouth sores.
I also got a small red rash in my armpit area.  Throughout  those 2 weeks I also had chills and occasional low grade fevers.
My AP MD is Dr. T in Boston.  He wanted me to take a 2 week break and then resume Mino at 1/2 the dose.  I stopped the mino. 2/26 and all of these symptoms are clearing up slowly.  Thank God.
My take on this is:
1.  The mino was working just maybe to well and quick for my body to handle.
2.  I see the possibility of other underlying problems because of all these new symptoms I had never experienced. 
3.  Possibility of Lyme bc of rash and muscle pain/ joint pain.

This is all in my unprofessional non-medical opinion.

LilyA

[davew]

This is a great thread..

When I started on AP this time, first, I experienced identical pain in joints that I experienced when not on mino, only it was in joints that I never experienced pain before. Bummer… However, it was relatively short lived ( about 2 months) and then it began to abate. Of course during this time frame, my MSM use was building up, so I would say some credit goes to that.

Now, most days are pretty good with an occasional target joint being hit. For example, my left elbow started hurting severly the other day. I do nothing more than and a heating pad at night and it cleared up in two nights. That seems to work each time.

I have begun to exercise again and that helps as well. Other than that, I am fortunate not to experience many of the other symptoms that a lot of you have.

I do count my blessings…:)

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