Herx? So dizzy and lightheaded can't stand or drive

[goldengate99]

    I just started AP and started at 50mg twice a day, working up to 100mg twice a day.

Yesterday I took the full 100mg twice.  Today I am so dizzy I can't barely function.  Very lightheaded.  Almost like a low blood sugar feeling but I'm eating so that can't be it.

Could it be a herx?  What are common AP herx symptoms?

Yesterday my hand also got very swollen and sore, first time I've had visible swelling.

[lynnie_sydney]

Goldengate – firstly yes it sounds like what you are experiencing is textbook herx. Secondly it sounds very much like magsmc's situation. As with her, I'm wondering what it is that made you up your dose so much and so rapidly. That is a very large dose you have upped to. Are you receiving advice on your dosage? If not, please be aware that this treatment is not one where more is necessarily better – in fact the opposite is often true. 

Please read the thread in response to magsmc's question because everything answering her questions also applies to yours. The thread is called “Question about Herx and Yeast, new on AP”. You'll find Maz's response particularly detailed and enlightening. You would also be advised to read up some of the material accessible from the Home Page page of this site – particularly on herxing. One of the brochures in the Community section is called “The Jarisch-Herxheimer Reaction” which gives a great deal of detail on “herxing”, what it is and common signs.  Type in this link to access it.  https://www.roadback.org/index.cfm/fuseaction/education.display/display_id/91.html

If you also type in “dizziness” in the search function above on this board, you'll find a number of posts discussing dizziness and what others have done about this. 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)

[goldengate99]

I've read the book (Scammell), read the Herx sheet, read the other post…. I'm still a bit confused.

My doctor told me to start with 50mg twice a day and to work up to 100mg twice a day.  I asked him about MWF and he told me it was up to me.

I did the 50mg twice a day for about a week, and then yesterday I did 100mg.  How should I have done it?  should I have done 75mg for a while??

I feel like a bag of sh*t today.  My mouth is as dry as the sahara and I'm grumpy, miserable, shaky, dizzy and lightheaded.  I'm the WORST mother in the world today to my 2 kids.  This sucks.

Thanks for all your help.  I really appreciate it.

[whaleharbor]

Goldengate,  unfortunately I can't answer your questions because I'm a newbie too…but I can tell you what I've just been through.

Dr. T prescribed 100mg twice per day.  The day after the first dose I was bedridden with dizziness and exhaustion.  I managed to stay on that dosage for 5 days.  I felt great arthritis-wise, but I felt drunk…like I would pass out.  I spent the next few days mostly sleeping…'cause I felt so sick.

I called my Dr. who told me to take it only once per day.
I was scared to even take that because what I went through was so horrible. Plus I went through this awful weepy thing (very unlike me) Just check out my freak out posts…you'll get a kick at how weird I was. Anyway, Dr. T didn't know what to do with me so he told me to ask my local rheumy.  I know he thought I was nuts.
Anyhow…I restarted again…upon doctor's orders at 100mg once per day for a while.  I guess this back-off restart thing actually helps…can you tell I'm no expert?

Anyway, today…no dizziness.

I don't know if it is a side-effect or herx or die-off or what. But at least for today I feel “normal” although of course the pain is all back now that I was off of it for so long. (3 days)

So…I'm on the same part of the road as you…looking a little further down the road at our guides (Maz, Lynnie, Cheryl, John, Pip, Superperro, etc…) to get me through. 

Call your doctor…get his advice…and hold on and hang in…I'm hanging scared right along with ya.

— whaleharbor 

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

[Maz]

[user=434]goldengate99[/user] wrote:

I've read the book (Scammell), read the Herx sheet, read the other post…. I'm still a bit confused.

My doctor told me to start with 50mg twice a day and to work up to 100mg twice a day.  I asked him about MWF and he told me it was up to me.

Hi GG99,

I'm sure you're not the worst mother in the world, because the worst mother probably wouldn't be feeling guilty. 😉 Seriously, though…figuring all this out takes some patience (which few of us have when we're suffering). As I was wisely told by an AP old timer, sometimes the dosage needs some “dialing” to get the most tolerable levels of herxing going. Herxes are “good” in this context in that they are indicators that you've got some die-off going on…although not much fun, they do herald better days down the road! You'll recall in the book that some people worsen significantly in the first few months, as was certainly the case for me.

As your doctor has consented for you to “play” with your dose, then as a possible suggestion…why not back off for the weekend and restart next week on MWF at 50 or 100mg. Do that and see how you go. If you feel a bit better, just keep it there for a few weeks and then see if you can raise it by another 25 or 50mg MWF… and then, again, wait and see how you do for a few weeks…if it's too much go back down.  You need to give each 25 or 50 mg step up in dosage a good few weeks of testing, because some herxing is a good thing…just not unbearable herxing….and herxes do wane much faster than flares, so a few weeks at one dosing level should tell you if you're tolerating that dose or not. Then, if your symptoms don't wane after a few weeks, then just back off your dose again.

This is a long term therapy and some degree of worsening is to be expected. However, “dialing” your dose to fit your level of hypersensitivity is what it's about. Some people just can't tolerate the higher doses and, when that happens it's very concerning, as you're discovering, because it can be very hard to tell between a herx and a flare, as a herx might go on for much longer than is necessary.

Personally, I don't think there is much difference between the outward manifestation of a herx or a flare, because the symptoms can be indistinguishable at times. In the early days, the only way I knew I was improving was by my blood markers, because I felt rough all the time on the high doses I needed to take for Lyme. There was no respite, physically. The thing that makes a herx and flare different is not so much in the level of inflammatory cytokines being circulated, but in the mechanism causing the inflammation. In other words, both cause increased inflammation, however, a herx is different in that the antibiotics are causing die-off, they're normally shorter in duration and herald improvements. Flares may also be the result of bacterial toxins due to natural die-off or rapid multiplication of numbers, but the difference here is that the pathogens continue reproducing at will, with a flare heralding long term worsening.

The goal with lower dose pulses is to figure out how to elicit managable, controlled herxes and to “retrain” your immune system to do the job it's supposed to be doing without over-reacting.  You're really the only one who can tell how your body feels, so you're the one who must be at the helm. It will take time to learn to listen to the signals your body is giving you to figure this out in the beginning. You'll get there…just be easy on yourself and take things very slowly as you restart.  😀

Peace, Maz

[whaleharbor]

Maz, you are amazing…that was a great explanation.

— whaleharbor

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

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