Herxing or not???

[clong1057]

I’ve read a lot about the Herx reaction and most of what I read states that you will usually get them within a few days of starting AP. I have been doing the treatment for about 4 months now and suddenly a few days ago I was feeling great and got out of the shower and had a sudden pain in my left shoulder and neck area. I did not pull anything in the shower it just started out of no where. Today is Monday and I still have that pain and it has moved to my underarm (like a pinched nerve sort of) and neck also some pain in my head and I keep getting real hot that only lasts for a few minutes and a little dizzy occasionally. Could this be herxing or should I be more concerned?

[niteowl]

Hi C,
One of the Moderators here, Maz has alot of experience with Herxing. I’m sure she will have some advice on how best to handle this. In the meantime I had a day about 3 weeks after I had started tx with Minocycline(100mg twice everyday). I couldn’t stand up or move without severe pain and ended up going to the ER as I wasn’t able to get a hold of my DO. After taking xrays there( showed degenerative changes). I was given muscle relaxers and pain Rx ( Vicodin 325/5 ) . I had to stay in bed for the next couple of days and just slept, took the muscle relaxers ( generic Soma ), this really helped! I also abstained from the Minocycline for a week as I may have become hypersentive to the Mycoplasma die-off. Also I use a heating pad to my upper back/ Rt shoulder.

I think you should probably see your Dr or ER to rule out any acute problems. Hopefully you will get a Prescription for something to relax your muscles and a pain Rx. A week after my trip to the ER, I went to my DO and got a prescription for both so when I get into trouble in the future, I’ll have a plan.

Maz was also helpful in reccomending a Detox routine as well. If your not able to exercise enough while Herxing to sweat out as a Detox, I’ve found that Coconut water ( I like vita Coco with pineapple. ) I’ll add Mirelax or Metamucil to the Coconut water to help detox.

You may also want to check out some recipes on the Alkaline Sisters website http://www.alkalinesisters.com/sisters-blog/
I also do hot Yoga as much as possible and occasionally schedule a massage. My Masseuse suggested bathing in Epsom salts, too.

I hope that helps! Sorry I didn’t post this sooner. I know how bad those spasms can be.

Diagnosed with RA in 2012
Fifth Disease in '03
Lyme? in 2000?
Had radioactive ablation of hyperactive thyroid in 1997
autoimmune thrombocytopenia resolved
Anemia resolved with treatment of RA with Minocycline
Blood type: B neg

Meds:
Minocycline 50mg once a week
Levothyroxine .88mg
Liothyronine 5mg
Methotrexate 20 mg once a week

Folic acid
B12
B6
Vit D
Biotin
Biosil
Cbd balm
Flexaril as needed
Aspirin
Benedryl
Ventolin inhaler
Lactibiane probiotic

[Maz]

Niteowl, so kind of you to bump up Cher’s post. 🙂 We’re getting lots of spam at the moment, so I get distracted deleting those off whenever I check in to the forum.

Cher, I took a look back at your prior posts and noted you’d had some symptoms back in Sept within weeks of starting AP – yes, herxing could possibly fall within that sort of time period – if cramping is occurring with exercise, then it could be a low magnesium or salt thing. My MIL has PsA and AS and she finds that drinking Canada Dry Tonic water (containing quinine) helps relieve cramping, as well:

viewtopic.php?f=1&t=7904&p=63745#p63745

However, four months in, if nothing else has changed in your protocol, then my fellow-patient take is that it’s unlikely that the shoulder symptoms would be herxing (unless you’re noticing monthly rounds of worsening as caused by Lyme disease, for instance, and you’re sure you haven’t injured your neck in any way). The thing about low dose AP is that it doesn’t suppress the immune system, so flares can and will continue to occur, but these should, over time, begin to wane in intensity, duration and frequency.

I noted you’d had a few cortisone shots in recent months. So, it occurred to me (if I have read your messages correctly?) that it may also be possible that as these are only effective for limited periods of time that as these wear off you may be experiencing rebound. In these sorts of circumstances, it can feel a bit like a yo-yo….amazing relief from the shot for a while, but then pain creeping back or hitting like a sledgehammer as the medication wears off. It’s a bit of a catch-22 using any form of immune-suppression while also following Brown’s low dose AP (though sometimes “needs-must”), because his rationale was that infections are at the root of the disease. Therefore, if one also suppresses immune function, then the therapy isn’t wholly effective in this light. That is to say that tetracycline abx are bacteriostatic…they don’t kill bugs, only disable them…so one needs a functioning immune system to go in for the kill and to clear away dead bug debris. Of course, the relief one feels when taking a cortisone shot is almost immediate, but it’s a dual-edged sword….incredible relief, but not without some payback. 🙁

Clong, how are your rheumatic disease markers looking? Have you had any recent bloodwork with which to compare against your baseline testing?

Niteowl’s suggestion re: detoxing should help whether flaring or herxing. In essence, flaring and herxing isn’t much different, because both are the result of circulating antigen (bacterial endotoxins). The difference is that flaring is random releases of toxins during the course of the life-cycle of the bugs that causes tissue hypersensitivity and herxes are abx-induced and the toxins released from dying bugs. Either way, it’s those nasty toxins causing the bacterial allergy to which rheumatics become disposed, according to Brown.

[Dawn]

Okay, not trying to “hijack” this post; however, just want to additionally submit:

I seem to have been experiencing similar type pains, lasting up to 3 weeks in duration. When they subside it is so vaguely and to be difficult to pinpoint until a week or two later. I am concerned at the multiplicity of “pains” of late which involve more than just the shoulder/hands as in the past. Trying to weather these storms, but when the playing field of pains increases it is worrisome as my next appt. with the rheumatologist will turn into a ShowDown if I haven’t overall progressed in my inflamation/pain/mobility.

That stated, I certainly have improved in mental fog, and overall use of my body since Feb-May this year; but it’s been a strange battle since July as described above. I have coped by pulsing prednisone dosages, but have been steadily declining it at my desire and my rheums insistance (visit last month).

Not even sure if anyone can make an additional expression on this scenario but it has been lurking in my head for days now and this post brought it to the fore.

Best and Hugs to all!
Dawn

DawnF

[Maz]

@Dawn wrote:

That stated, I certainly have improved in mental fog, and overall use of my body since Feb-May this year; but it’s been a strange battle since July as described above. I have coped by pulsing prednisone dosages, but have been steadily declining it at my desire and my rheums insistance (visit last month).

Hi Dawn,

Don’t worry – your post is relevant to this thread and it adds a lot to the discussion. 🙂 Sharing experiences like this can really help others.

My best fellow-patient guess on what is happening is that the prednisone pulsing and reduction in doses could well have something to do with the ups and downs you’re experiencing just now. It can be very difficult to wean from those last 5mgs and also to move through the rebound that is experienced. Your rheumy is right in this regard…pred is such a devil of a drug….great for immediate relief, but not without longer term consequences. The first year on AP can be very disconcerting, too, as it’s very much a 3 step fwd and 2 step back dance. For a run of days one can feel improved and then, in another run of days, it feels like you’re going backwards again. Add weaning pred to this mix and it can be a bit of a roller coaster. When you manage to get off the pred completely and rebound has settled down, it should be a little easier to gauge current status and to then to really do some focused work on some adjunctive supports to see what may work best for you.

If your current doc is not willing to support you and is inexperienced with AP, there are some good AP docs in CA if you need a list. Would be happy to send the full list to you, if you’d like it.

[Maz]

@Dawn wrote:

Okay, not trying to “hijack” this post; however, just want to additionally submit:

I seem to have been experiencing similar type pains, lasting up to 3 weeks in duration. When they subside it is so vaguely and to be difficult to pinpoint until a week or two later. I am concerned at the multiplicity of “pains” of late which involve more than just the shoulder/hands as in the past. Trying to weather these storms, but when the playing field of pains increases it is worrisome as my next appt. with the rheumatologist will turn into a ShowDown if I haven’t overall progressed in my inflamation/pain/mobility.

That stated, I certainly have improved in mental fog, and overall use of my body since Feb-May this year; but it’s been a strange battle since July as described above. I have coped by pulsing prednisone dosages, but have been steadily declining it at my desire and my rheums insistance (visit last month).

Not even sure if anyone can make an additional expression on this scenario but it has been lurking in my head for days now and this post brought it to the fore.

Best and Hugs to all!
Dawn

Hi Dawn,

Don’t worry – your post is relevant to this thread and it adds a lot to the discussion. 🙂 Sharing experiences like this can really help others.

My best fellow-patient guess on what is happening is that the prednisone pulsing and reduction in doses could well have something to do with the ups and downs you’re experiencing just now. It can be very difficult to wean from those last 5mgs and also to move through the rebound that is experienced. Your rheumy is right in this regard…pred is such a devil of a drug….great for immediate relief, but not without longer term consequences. The first year on AP can be very disconcerting, too, as it’s very much a 3 step fwd and 2 step back dance. For a run of days one can feel improved and then, in another run of days, it feels like you’re going backwards again. Add weaning pred to this mix and it can be a bit of a roller coaster. When you manage to get off the pred completely and rebound has settled down, it should be a little easier to gauge current status and to then to really do some focused work on some adjunctive supports to see what may work best for you.

If your current doc is not willing to support you and is inexperienced with AP, there are some good AP docs in CA if you need a list. Would be happy to send the full list to you, if you’d like it.

[Dawn]

Maz,

Looks like the “list” would be beneficial at this point for me as I’ve been trying to do this on my own education with RoadBack as my go-to resource and using my rheumy as a prescription-only doctor (not fair, but didn’t get any interest or indication from her when I took materials discussing this protocol and my personal desire to her on my 2nd or 3rd visit). If you could PM me, or if I need to send a request in let me know. Specifically the Bay Area is my preference, but if needs be – at some point my husband and I would/could arrange to travel-out to a more distance locale.

Thanks for the quick response!
Dawn

DawnF

[Maz]

@Dawn wrote:

If you could PM me, or if I need to send a request in let me know. Specifically the Bay Area is my preference, but if needs be – at some point my husband and I would/could arrange to travel-out to a more distance locale.

Hi Dawn,

Have sent you the AP doc list for CA in a PM, which includes those in Bay Area. Sending all good wishes to you in your searches for the best doc for you and answers to your health questions.

[Dawn]

Maz, Got it – thank you very much as I will make use of it!

Thank you clong1057 for starting the thread…hope you receive the insight you need as well!

Dawn

DawnF

[clong1057]

Thanks for the reply’s. This is all still pretty new to me and whenever I get something I have not experienced before I have to wonder. I started getting electric like pains shooting up my spine and neck so decided to try the chiropractor this morning. I still have it a little but it usually takes a day or so to feel the effects so will see. He did say both my neck and lower back were way out so time will tell. As for the cortizone shots I have not taken one since August and my hip is actually doing quite well which is where I had gotten them before. I’ve been reading about the detox and have to look into it a little more. Right now I have been working 12 hours a day, which I know is not good but will only be doing until the holidays then will slow down some.
I do manage to get to the gym at least 4 days a week and either do eliptical and some exercise or swim which always makes me feel pretty good.

I got a scrip from my AP Dr. to go for blood work and also check vitamin D levels and for Lyme. Just have not made it there yet. Maybe tomorrow or Friday will do that. I have seen some improvements and just when I think things are going better it seems I get something new. I understand I am still a newbee at this treatment and it does not happen overnight so I will hang in there. I will let you know when I get blood results. Missed last months because I was 10 minutes late for my appt. with Rhemy and she would not see me and made me reschedule (3 months from now):( I think I will be looking for a new family Dr. and just stick with my AP Dr. for this. Anyway I seem to be rambling on so I will go for now.

Thanks again for your replies and hope you are all doing well. I love this site as people really seem to care and give great advise.

Sincerely,
Cher

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