Emotional Herx or the Twilight Zone

[whaleharbor]

So…I think I'm back now…the real me that is.  You all have been a witness to my freaking out …which is most unlike me.  For that I apologize to you all…but perhaps it will be helpful to someone in the future, I guess.

A miracle happened…Got dizzy from Min…called Dr. T who told me to see my local rheumy about it so that he (the local guy who doesn't believe in AP) could decide what to do.  After a year of battling and finally getting on ap only to get dizzy and being told that…I pretty much lost it.

But much to my surprise …here's the miracle…(perhaps the letter from Dr. T arrived and my local guy talked with him already)…my local rheumy was very supportive….very, very, very supportive…even mentioned having other patients on Minocycline (gee…why did I have to fight him for so long and  fly to Boston ..but whatever)

So I guess I'm in the twilight zone…but I'm restarting AP tonight…just much slower this time…thanks to recommendations from you guys, Dr. T and my local rheumy.  And for right now…I'm not all teary-eyed…(which I hate 'cause I'm not a cryer!)

Thanks again to all of you.

I do have a question…did you all get extra emotional when starting AP…or is this fight just that hard?

— whaleharbor

Minocycline 100mg every other day with food...lots of food: Zydus brand. Celecoxib 200mg twice per day: Greenstone brand.

[Cheryl F]

You have absolutely nothing to apologise for!  But everything to celebrate!  This is wonderful news.  Any Rheumy going from resistant to even neutral is a good thing!  Really, really supportive, WOW, that is a dream come true!  You have made a difference in those that will come after you.  Maybe next time the patient won't have to fight so hard, or fly across (or up and down in your case) the country to get AP! 

We can all celebrate your achievement, CONGRATS!

Cheryl

[Michele]

Hey Whaleharbor!

I'd love to see Dr. T's letter! Wow, that's great! But what a huge seachange!

Emotional???? Yup. Definitely. It's a seachange in our lives, too, so I think we are allowed!

Hope you find your tolerable dose!

Take care,

Michele

[lynnie_sydney]

Great news on all fronts whaleharbor. And, whatever your rheumy's reasons, take his support and run with it, it will be invaluable to you. I dont remember herxing emotionally (I'm going back 5 years). What I DO remember though is having a couple of things that I didnt expect happen to me that frightened me. I came to the Board for help, received reassurance and pointers on where to find out more info and what had helped others. It IS a big call to swim upstream and not unusual to become emotional if there is anything that makes you question your own wisdom. I am so glad you are in calmer waters and that you now have good support on two (no make that 3!) fronts. 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)

[John McDonald]

WH – Many of us have reported lifting depression with AP and Brown stated emphatically that the depression was a primary symptom, not a result of symptoms, but a primary symptom. My point is that is an emotion.

For my part I can vouch big time that emotional herxing is possible. I wasn't aware of too much of that on my 18 months or so of straight AP and I didn't notice emotional herxing much on my 12 months of MP phase 1 & 2. But when I started MP phase-3 by adding the 3rd antibiotic, well, I have been killing microbes in my brain for about a year and a half now. My RA symptoms are OMG, like about totally gone, as my daughters might say. But I have now endured about a year and a half of neuro-herxing, cognition and emotions. Some day we can have tea and I will regale you with stories, some funny. But my point again is that if you have microbes helping you out a bit with your noodling and emoting then hell yes, you can have neuro herxing. It is quite commonly reported among lyme patients.

[whaleharbor]

Cheryl, thank you for your positive words.  I never really looked it at that way…but you're right…perhaps the next local patient will have an easier road.

Michele:  I would love to see Dr. T's letter also.  He was sending a copy to my family doctor…who is a gentle and reasonable soul…so perhaps I'll get a copy from him.   I'm curious too..because it was such a change.

Lynnie:  The support of everyone here has truly been a blessing and gotten me this far on this battle.  Thanks everyone!

John:  Curious thing about that depression.  Any significant flare that I've had in the past was preceded by exhaustion and depression (albeit mild).  After my initial full dosages I had an exagerated exhaustion and depression response.  So looking back at it now, a little more clear-headed on a lower dosage, and with ya'lls help, I think it was a herx. 

Perhaps if someone in the future searches out freaking out or emotional or depression they'll come up on this thread and feel better about it all.

— whaleharbor

Minocycline 100mg every other day with food...lots of food: Zydus brand. Celecoxib 200mg twice per day: Greenstone brand.

[Kim]

Oh yeah, WH, emotions and depression are part of the deal here.  Honestly, how could these diseases not be depressing when our lives have taken a serious detour.

Maybe we should all have an adult 'time-out room' where we could retreat, or our families' could send us when we're a little too out of control.  Definitely one in John's house :D:D:D:D:D.  Just kidding, John!

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