when am I "herxing" or when do I just have the flu?

[amyid]

Ok, I am still fairly new to all of this; so this question may seem silly, but how do I really tell a herx from a flare or flu, etc.?   I have been on the AP for over a month.  I had a bad flare a few weeks in because I had to abruptly stop the MTX I had been on.  Since that flare a couple of weeks ago, I have been feeling pretty good (back on half the dose of MTX along with AP and Plaquenil).  I still have the occassional stiffness, achy joint here and there, but nothing horrendous.  Also my fatigue and brain fog have been better the last 2 weeks.    I also usually feel worse the day after my Minocin but nothing awful.  I thought I was cruising through!

  However, this past Tuesday I felt like complete CRUD:sick:!  But it wasn't the typical RA stuff, it was fluish symptoms: upset stomach, intense muscle pain in my neck and shoulders which caused a tension headache.  (no fever though) accompanied by lighting quick flashes of pain through my hands and some stiffness in wrists and knuckles.  Does that sound like a herx or the flu?   My hubby thinks it's a herx, since my joints have finally settled down enough for the Minocin to penetrate.  However, I feel like it's a flu????

I felt better today for a couple of hours after my first dose of Minocin, but now I feel like crud again.  I feel worse after I eat. 

I was just wondering when am I “herxing” or when do I just have the flu?  I guess I am afraid to hope that it's a herx.  Sounds strange, I suppose…I just desperately  want this AP to work for me (like everyone else here).  I don't want to talk myself into believing it is working so soon, if I just have the crud.  Cautious optimism or self preservation- who knows??

Any advice or opinion would be appreciated. 

“Woo-hoo! What a ride!”:dude:

Amy

DX Rheumatoid Arthritis- 3/2008, Began AP 8/2008-continued various forms of AP through present. It's long and complicated- have a question re: my protocol, just ask 🙂

[lynnie_sydney]

Hi Amy – certainly sounds like a herx, if your “flu” symptoms are somewhat transient i.e. you would expect a bona fide flu to run the 7 to 10 day course, which yours doesnt seem to be. Below is a link to the Jarisch-Herxheimer (herx) info on RoadBack site. I have also made a copy pdf file of herx info from the FAQ section of rheumatic.org site…which also gives some tips from Garth Nicholson on how to alleviate symptoms. It's a funny ol' world isnt it when feeling like “crud” can make us cautiously optimistic! 😀 Lynnie

https://www.roadback.org/index.cfm/fuseaction/education.display/display_id/91.html

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)

[amyid]

Thanks Lynnie,

I printed out both articles and it does seem as if it is a herx.  We'll see.  One thing that holds me back on “fulling trusting” the AP with Minocin for me,  is that my history involves numerous, serious strep infections-from toddler years thru adulthood.  I wonder if biaxin or other strep focused abx would be better.  I was on Amox 750 mg 2x a day for a year as a prophylactic due to constant sinus infections (my IgG2 subclass  of my immune systems was low).  Late into that therapy I started to feel GREAT! 

I am trying to find the best AP doc for me.  Hopefully, the worry over if the Mino or another would be best will be answered. 

Thanks for your help in the meantime.

Hope you have a terrific day!

Amy

DX Rheumatoid Arthritis- 3/2008, Began AP 8/2008-continued various forms of AP through present. It's long and complicated- have a question re: my protocol, just ask 🙂

[Maz]

Hi Amy,

Sorry to hear you're feeling rough. It's hard to remain positive on those rollercoaster days on the way back. The only way I can tell a verifiable herx from a flare, even now, is in retrospect….after its passed!

May not sound helpful at all and it probably isn't, but when you're going through a herx, it can be as bad as a flare. Herxes tend to be shorter lived, though, and once its passed, you may start to notice some little improvements (fog lifting, improved strength, less pain in a joint, etc). Flares tend to be longer in duration and no improvement is noticed after the worst is over. It can take some months in the early days to begin noticing the improvements, too, which can be disheartening. It's very much a three step forward and two step back dance. Even now, although I am experiencing some great days where I feel 90 to 95% better, I still get those backward days where I go back to 50 or 60% and just want to crash and burn in bed. These rough days are only happening about twice a month now for a couple days at a time, whereas it was continuous in the beginning and then only having one better day out of every 14, then 1 out of every 10, etc. I think because I was so severe, it's just been really slow to turn around in my case….21 months to date.

Strep is definitely one of those coinfections that can slow progress. When I started pulsing in azithromycin to my AP in March, I noticed some really unusual and disturbing herx symptoms in lymph glands (flu-like) and heart (palps) 4 or 5 days after my dose. These have mostly passed, but still get little reminders now and again. I realized at that time that this was probably strep-related, as I remembered that untreated or late-treated strep can get into the heart and cause problems. Possibly those L-Forms that Brown talks about in The New Arthritis Breakthrough. The penicillins can also drive some pathogens into L-Form state.

Anyway….hope you find your answers soon, Amy. It's frustrating in the beginning, wading through the quagmire of our individual picture, but you'll get there with the help of a good AP doc. In the meantime, keep that cautious optimism and self-preservation intact. They've become my very good friends, too, and have been very purposeful – again, as I look back in retrospect. The first will keep you motivated and questioning and the second will keep you strong and lead you to your answers. 😀

Peace, Maz

[katieb]

Hi Amy,
I also found the rheumatic.org herxing article very helpful (thanks Lynnie !) as well as Maz's reply. It has helped to convince me that the 2 'mini' flares I have experienced this week were in fact herxes. This is how they felt.

First time : About 3 hours after taking my dose, during the evening, I suddenly noticed that I could barely move the 3rd finger of my left hand without severe shooting pain through my palm. Up to then it had been fine. Next morning it seemed that every joint that had ever been stiff was stiff, and it was a painful shuffle to get to the bathroom. Immersed both hands and wrists in a bowl of hot water and tried to get them moving. 3rd finger still pretty stuck. Over the next 36 hours up to my next dose it improved steadily until I could bend it almost all the way without much pain. Also all the other joints had returned to 'normal'.

Second time : The very next dose, almost identical, but this time the middle finger of the same hand swelled up, and although I could bend it, I couldn't straighten it beyond about 150^o (ie 30^o off being straight) without excruciating pain shooting through my palm. The night passed in similar fashion, though I did notice a bit of a night sweat and if anything was even stiffer in the morning than first time. That was this morning. Today I have periodically tried to massage my palm hard to release the finger, and when I sat down to watch Andy Murray playing a Wimbledon, had a good go at pressing it flat on the sofa and shoving the knuckle down to get it straight. This evening it is much improved and will go to 175^o  quite easily.

The fact that both these painful events have subsided fairly rapidly makes me think now that they were herxes, and although not all that nice, if it means that the joints are being reached by the medication, then I'm happy to grin and bear it !!!

I'm not sure that these were followed by any actual improvement yet, but I've only been on the mino 2 weeks & am not expecting miracles !! I plan to try the lemon/olive oil drink, but not sure I like the sound of the peroxide bath, however if these herxes get any worse maybe I'll try that too.

Hope this helps a bit Amy, and hope you manage to find the best medication for your particular situation.

Katie

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[lynnie_sydney]

Amy – sounds like the mino is reaching its target. With your herxing, it's good to remember that this is not the usual kind of abx treatment that we use in short sharp doses. It's the opposite. It is a slow (sometimes achingly so) form of treatment over the long haul, with improvements sometimes imperceptible as they are happening. Tweaking your treatment and considering other abx is something you can discuss further down the track with whomever you choose to be your AP doc for the long haul. For now, I'd be celebrating. Lynnie

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)

[amyid]

Lynnie, Maz & Katieb,

Thanks for the support!  As you said, hindsight is the best determinant of a herx versus flare.  I did the epsom salt bath and saw my chiropractor yesterday to help me manage things, I felt pretty awful throughout the day and night.  However,  I am feeling better today.  The nausea and aches have subsided.   I was virtually pain free all day.  Just a weak, achy wrist tonight.  Again, as you said, the fleeting pain and symptoms suggests a herx versus a flu or flare.  It is just so hard to not feel overwhelmed when you feel so crummy.  It was weird that I was excited to not feel good, but the worry wort in me feared it wasn't a herx, but a flu bug.  I am so glad to feel better now to see the herx for what it was!  Next time I won't be so concerned.  Live and Learn:blush:

I am so grateful for this BB.  I appreciate all your insight and advice.

Amy

DX Rheumatoid Arthritis- 3/2008, Began AP 8/2008-continued various forms of AP through present. It's long and complicated- have a question re: my protocol, just ask 🙂

[Sierra]

I work in the medical field…actually there is no such thing as a stomach flu, even though people commonly refer to intestinal illness in that way. The only true flu, influenza, is a respiratory illness, with fever, coughing, etc.

Sierra

[lynnie_sydney]

Sierra – my understanding was that Amy said she had an upset stomach/nausea as well as flu-type symptoms. Lynnie

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)

[amyid]

Sierra,

I wasn't trying to suggest I had influenza.  I was using generalized “slang”  terminology, not trying to be medically diagnostic.  I realize influenza is serious with respiratory symptoms, and fever.  However, many people commonly state they have the “flu” or “crud” (as I did) to describe symptoms commonly recognized by lay persons as feeling achy, nauseas, feverish, and generally uncomfortable.  

When it comes to intestinal ailments, I think people often say “stomach flu” and are not trying to imply influenza like that which many are immunized in hopes of preventing.  Rather, it is socially known to mean a raging case of diarrea, vomiting or combination thereof.  :sick:  “Stomach flu” just sounds kinder.

 You are absolutely correct.  It was definitely a mis-statement to say I wondered if it was the “flu”.   However, when viewed contextually it is usually understood to signify general malaise versus an actual influenza infection.  I appreciate that you clarified that point, as I would not wish to confuse other readers.  My post was to give a general description of my state of being to others more familiar with AP and get their opinion on whether this seemed to be a herx as I am new to AP and not quite sure what I am experiencing.  I have two small children, am on some strong medication besides Minocin, so was concerned it may have been something else; whether that was an intestinal upset caused by bacterium,  or physiological irritation from medication just seemed unnecessary to ponder. 

Anyhow, Lynnie and Maz got the gist and extended me the proverbial “hand” I needed.  I appreciate the clarification, though.  I will be clearer in the future. 

 

Life shouldn't be a journey to the grave intending to arrive safely in an attractive well preserved body.  Instead, skid in sideways, body all worn out, screaming “WOO HOO!, What a ride!”:dude:

 

Amy

 

DX Rheumatoid Arthritis- 3/2008, Began AP 8/2008-continued various forms of AP through present. It's long and complicated- have a question re: my protocol, just ask 🙂

[Sierra]

Sorry, I automatically go into education mode when I hear the words “stomach flu.” Didn't mean to be insensitive.

Sierra

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