Herxing while not on abx!

[spacehoppa]

Hello everyone, Sorry I’ve been away so long… Again.

My regimen has changed so much over the past six months, I hardly know where to begin. I had stopped the mino and the clarithroycin, and also stopped the arcoxia altogether. I’m still on hydroxychloroquine (plaquinil) and 7mg pred though (due to adrenal suppression).

I had been experiencing bad vertigo, which I thought may have been the abx, so I stopped them, although I’ve worked out since that it wasn’t the abx, but an ear infection coupled with blocked sinuses.

I also had to change Lyme doctors as my doc retired and my new doc wanted me to go on the Paleo diet and stay off the abx to heal my gut.

My eyes became dry almost immediately on stopping the Abx, and the glands in my throat have been up and down a lot too – all old symptoms from before the abx.

I took a week’s worth of clarithromycin lately to see if it helped the conjunctivitis that has developed in my eyes and my throat any. It may have done but my eyes are still dry.

The real problem, though is that I haven’t taken any abx for two weeks now and I am herxing violently and have been doing for three days. Is this from the week’s worth of If so, eek!

the herxed are the same as they were at the beginning of my time taking abx – extreme tiredness, nausea, and overall bad feeling, worse joints temporarily and most disconcertingly violent twitching and muscle spasming. Am I back at the beginning? 😯

Just to confuse the issue my Lyme doc has had me undergo allergy testing and I have a bunch of foods in a vaccine I self inject each day. Interestingly though, the things I was most allergic to were, histamine, oestrogen and aerobic and anaerobic bacteria. I was the most allergic of all to the anaerobic bacteria and ended up curled up, spasming like mad, feeling like an electric pulse was being sent through my arms, crying and nearly puking. It was HORRIBLE. But surprisingly, this herx is almost as bad. I had a massage from my osteopath 2 days before the herx began. I am wondering whether that precipitated it.

I was fascinated to learn that the allergic reaction I had to the bacteria in the allergy testing kit is exactly the same in all respects to what happens when I herx. So I now see they are the same thing. I’m guessing herxing is simply having an acute allergic reaction to dead bacteria. The bacteria have been to added to my vaccine now, so hopefully they will help calm this overreaction in time.

Certainly, the vaccines have made it so I can eat eggs and mushrooms without any difficulty, so they do seem to work. As for the question of which bacterial strains are in the vaccine, I don’t know I’m afraid. I should ring and ask. Sadly, my new doctor has also now left just this month, so I need to find another doctor again, which is depressing.

One light in the darkness is that my arthritis has not flared badly through all this, though when I get my period in a couple of days it might. My Lyme doc wants me to start taking Azithromycin one week a month during my period, which although it sounds like a good idea in principle is scaring me a little if I have to herx all over a bloody gain! 😕

So sorry for such a long post. Watching my tedious videos might actually be quicker 😡 . Hope everyone is doing well. He I am again, not knowing whether I need the abx or not? My gut tells me I do. Any advice anyone? Help!

[kali]

Hi Ruth,
I don’t know how long you have been on AP or how long you laid off of it – but – speaking from my own experiences I would say a YES about the Clarithromycin causing the herx. I think any change in our regime can bring on a herx. Since you laid off a while and went back you may also be have developed a hypersensitivity to the abx. Meaning they are more powerful to your body now. Dr. Brown writes about it and equates it to a delayed reaction to the drug from getting too much at once. I equate it to the fatal shot of tequila…the one that throws you into a puking fit. The first two are fine – but the third one throws you over the edge. I recently had a horrible week long herx from the clindy that I pulse in every ten days. I pulsed it in too close to my last dose of mino and BAM. Same as you – I felt like I was back to the beginning. Terrible fatigue, pain, CNS jitters…

I can IM you a copy of the hypersensitivity transcripts.

I hope you feel better soon.
Kali

[spacehoppa]

Thanks for your reply Kali. God, I hope I’ve not become hypersensitive to the clarithromycin. That would really suck! Do you think it means I wouldn’t be able to tolerate it at all, or just that I might need half the dose or something?

Yes, please do IM me the transcripts. It sounds well worth a read.

By the way, I had been on a Mino, clarithromycin, plaquinil combo for two years straight before I stopped the clarithromycin and minocycline. Prior to that I had been on all the usual RA drugs – humira, remicade, mtx, pred, sulphasalazine, etc. I have had Lyme and RA for 23 years, but the Lyme diagnosis only 2.5 years. Thanks again!

[Maz]

@spacehoppa wrote:

I was fascinated to learn that the allergic reaction I had to the bacteria in the allergy testing kit is exactly the same in all respects to what happens when I herx. So I now see they are the same thing. I’m guessing herxing is simply having an acute allergic reaction to dead bacteria. The bacteria have been to added to my vaccine now, so hopefully they will help calm this overreaction in time.

Sadly, my new doctor has also now left just this month, so I need to find another doctor again, which is depressing.

Hi Ruth,

Always great to see you and I love watching your Youtube updates, though I have a few months to catch up on. 😉 There is a new doc (allergy, environmental medicine and nutrition) in Surrey who may be able to help you, though we have not yet had confirmation from her to add her to the list and am unsure of her Lyme Literacy (although being an Env Med doc may well be a hopeful thing) . Currently, she is just checking into myco testing for her rheumatic patients.

Glad to hear you’ve done okay being off your abx for so long, although it’s pretty common for Lyme relapses to occur. Many chronic Lymies and rheumatics will remain on a low maintenance dose for life just to help ward off relapse. Thing is, you’re on a new protocol now that may or may not complement abx therapy. Dr. Brown’s theory was that it’s not the bacteria, but their toxins to which rheumatics become hypersensitive … he referred to it as “bacterial allergy” or “bacterial hypersensitivity” and there is a good deal of info on this in the Henry Scammell book, if you have a copy. It sounds like the ND you are seeing also believes this as she is trying to desensitize you to these bacterial toxins with the vaccines. In a way, it is perhaps not surprising that adding more toxin into the mix with the quick round of biaxin may have precipitated a new herx in this regard.

Could the conjunctivitis have been a flare-up of your bartonella? Lyme and Bartonella love hiding and hanging out in the lymph nodes and a massage that stimulates flushing of the lymph can cause a lot of pain.

I’ll send you the link to this Surrey doc’s website, so you can look it over. As mentioned, not sure about whether she is offering AP yet, but she is aware of the foundation and has been in contact.

Hope your new therapy helps and look fwd to catching up on your video blog. 🙂

[Michele]

Hi Ruth,

I have had enormous herxing following a massage. It stirs up the toxins. I recall having to do a lot of extra detox in the week following the massage. Welchol was the biggest help to mop up the toxins. That was a miserable week following the massage…but then I had about 6 great weeks where I felt really good. I don’t know if this is the variable making you miserable right now, but I can confirm that massage affects me this way.

Michele

[Trudi]

@Michele wrote:

I have had enormous herxing following a massage. It stirs up the toxins.

Hi Ruth–
Same here. I eventually stopped; I had a massage every two weeks–I was miserable.

I had an appointment with my chiropractor yesterday. Since January, I have had a lot of problems. I started juicing (a good thing, but had lots of either detox or herxing from it), started whey protein (stopped after a month–too much added pain), and at the suggestion of my ND started turmeric for babesia. http://www.livestrong.com/article/144308-how-use-tumeric-treat-babesia/ With the turmeric, my knees started hurting so bad I could hardly stand, much less walk.

So, at yesterday’s appointment, my chiro said to slow way down. So I am going to try every-other-day and see what happens.

Hope you find some relief and answers,
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?

[spacehoppa]

Thanks for the replies everyone!

Wow, Trudi, I’m shocked to hear that you can herx from juicing, whey protein and turmeric! That’s amazing! Although I am constantly shocked by this disease and the way it affects our bodies. Honestly, I wouldn’t believe half of this stuff if I weren’t experiencing (read: suffering through it) it myself!

Yes, with hindsight I do see a correlation between the osteopath treatments and herxing. For a while I was okay because I was off the abx entirely and I also had a knee steroid injection and I think this dampened my herxing considerably, but since that has worn off, I am feeling the effects of the massage full force. He also does cranial and works on my swollen knee joint. I wonder whether it might be better if he does this for a while rather than massaging my back?

I do really feel good after the massages though (immediately after, but maybe not days later), and since I came out of the herx yesterday I’ve been feeling pretty good considering I’m on my period. Also, the fibromyalgic pain in my back has gone. It used to be that touching me on my back anywhere was exquisitely painful, but the massages seem to have corrected this. Also, I used to have pain at the backs of my armpits regularly (don’t ask me what is there physiologically??), and that is gone too. I wonder whether I should get the massages but lay off the abx for a while? Maz said something to me in a PM that made me quite happy – that maybe my immune system is back on line, as it were, and is bug killing on its own. This is a distinct possibility as I have a (too) high vitamin D level and I’ve been feeling a lot better recently. Plus, Breakspear have had me on a Paleolithic diet and loads of supplements that have been building me up the past six months.

The best one by far is the pregnenolone for my hormones. My cycles used to last about 2-3 months, but now they’re exactly 28 days every time! I am amazed by this and think that regulating my hormones can only help my overall health. I had an excess of estrogen before and a lack of progesterone. Also, I regularly had estrogen headaches (due to being allergic to estrogen) and since I’ve been using my vaccines (that contain estrogen) I haven’t had a full blown headache since! I get the beginnings of one sometimes, but it never develops into a full headache.

Sorry, so much rambling. As ever I see that there is still so much for me to learn. Thanks for the turmeric link Trudi. I will read that. Given my current sensitivity to abx, it might be worth trying something a little less full on.

Maz – I hadn’t considered that the massage might have triggered the conjunctivitis. Certainly, it is very hard to get rid of once it gets started. I am bunging some type of lanolin (greasy) substance in my eyes at night to try and stabilise my dry eyes. I never did get a treatment specifically for bartonella. I have had trouble with my eyes for years now, but much less so on the abx of course.

Thanks again everyone! Thankfully I am feeling much better today, apart from the period pain, but that I can handle 😉 .

ruth

[lynnie_sydney]

I actually think the inflammation that results from osteo/chiro/massage/other mechanical treatments is more likely to be a flare than a herx because by definition a herx response is caused by cell die off. Please correct me if I’m mistaken here, but I cant see how mechanical treatments can cause cell die-off?

The Jarisch -Herxheimer, or Herxheimer reaction, was named for the German dermatologist, Karl Herxheimer (1844-1947). Dorlands Medical Dictionary refers to the Herxheimer reaction as a transient, short-term, immunological reaction commonly seen following antibiotic treatment of early and later stage [infectious] diseases which [may be] manifested by fever, chills, headache, myalgias (muscle pain), and exacerbations of cutaneous lesions. The reaction has been attributed to liberation of endotoxins-like substances or of antigens (a substance which causes an immune reaction) from the killed or dying microorganisms.
https://www.roadback.org/index.cfm/fuseaction/education.display/display_id/91.html

see also: http://en.wikipedia.org/wiki/Herxheimer_reaction

I have had gentle chiro/osteo treatments from before I started on any abx protocol and they sometimes (if a little too strong) could cause me to briefly flare. There is no difference for me now whilst on abx – if a little too much manipulation is done on areas in my body that are prone to inflammation, I will get the same kind of mini-flare. My long-term chiro (who only does osteo on my neck/cervical spine/head) knows well how much is enough for my body and tends to do something like a more gentle physio/osteo manipulation to avoid this.

I do agree that I always feel better after the treatments and my AP Doctor believes strongly in gentle mechanical treatments such as these to keep suppleness in muscles and joints and to help prevent long-term mechanical problems.

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)

[PhilC]

Hi Ruth,
@spacehoppa wrote:

One light in the darkness is that my arthritis has not flared badly through all this, though when I get my period in a couple of days it might. My Lyme doc wants me to start taking Azithromycin one week a month during my period, which although it sounds like a good idea in principle is scaring me a little if I have to herx all over a bloody gain! 😕

It might be a good idea to ease into the azithromycin. Read this page to learn about one way to accomplish this:

Stratton Combination Antibiotic Protocol Update: February 2006

Phil

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

[Trudi]

Hi Ruth–

Wow, Trudi, I’m shocked to hear that you can herx from juicing, whey protein and turmeric!

I have always recognized that when I take any kind of anti-inflammatory or ate extremely well, my pain increased. My chiro feels (and I totally agree) that my immune system is working too well and that is why we need to back off on the treatment.

I have a (too) high vitamin D level and I’ve been feeling a lot better recently.

Very interesting. Whenever my (blood) d levels have been high, is when I have felt the worst. Last year my ND put me on D supplements after bloodwork showed low (not deficient) vitamin D levels. I felt awful on the supplements. I saw my electro-dermal doctor shortly thereafter and he said not to take the vit D because it was bad for me. Then a few months later I started seeing my chiro who checked all my current and old supplements through muscle testing. The vitamin D showed up as very bad for me. Not until my last visit with the ND do we think we have the answer. I had an Organic Acids Test done and under “Bone Metabolites” the phosphoric acid result was at 5,351 out of a range of 134-6,077. Excess or high phosphate is, according to the Great Plains Laboratory who runs the test, “associated with hyperparathyroidism, vitamin D-resistant rickets, immobilization following paraplegia or fracture due to bone resorption, vitamin D intoxication, blood lead levels above 1.5 ppm, renal tubular damage, familial hypophosphatemia, and metabolic acidosis.” Obviously, there are numerous reasons, but my ND feels I have low blood levels of vitamin D, but high vitamin d levels in my tissue. I tend to agree with her since both the electro-dermal and muscle testing showed supplementing is no good for me and when I have supplemented I have felt worse.

The best one by far is the pregnenolone for my hormones.

Has the pregnenolone helped with pain? I was reading a book on prescription alternatives and the author recommended pregnenolone for pain. This has been a consideration on my part. Can I ask how much you take?

Hi Lynnie–

I actually think the inflammation that results from osteo/chiro/massage/other mechanical treatments is more likely to be a flare than a herx because by definition a herx response is caused by cell die off. Please correct me if I’m mistaken here, but I cant see how mechanical treatments can cause cell die-off?

I wonder if the inflammation comes from detoxing and we think “herx” because of the increased pain?

Take care,
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?

[PhilC]

Hi Ruth,

I just wanted to add that there is a good reason why you might want to be extra careful with azithromycin– it has a very long half-life (68 hours).

One of the Marshall Protocol web sites has a warning related to this:
http://mpkb.org/home/mp/zithromax

Phil

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

[spacehoppa]

Thanks Phil,

Yes, my LLMD told me this when she prescribed it, saying that it’s long half-life was one of its benefits over clarithromycin. I think maybe I should try it starting with one pill per week, given my recent herxing experience. I had another bad herx last night, with fevers and chills and lots of twitching again. Hopefully, I will get a telephone appointment with a Breakspear doctor sometime today. If it’s abx herxing, I can just ignore it and wait for it to subside. But I just want to check that it’s not related to my vaccines, as they’ve added anaerobic and aerobic bacteria to them 3 weeks ago, and I had this same violent herx-type allergic reaction to these two allergens during testing.

Thanks again everyone – hugely helpful responses as always!

[Krys]

@lynnie_sydney wrote:

I actually think the inflammation that results from osteo/chiro/massage/other mechanical treatments is more likely to be a flare than a herx because by definition a herx response is caused by cell die off. Please correct me if I’m mistaken here, but I cant see how mechanical treatments can cause cell die-off?

..gentle chiro/osteo treatments …sometimes (if a little too strong) could cause me to briefly flare.

I do agree that I always feel better after the treatments ….gentle mechanical treatments…

This is my oversimplified understanding of what is happening:
When the detoxification pathways are not working properly or when the body is overburdened with toxins, it stores them within the fat tissues for “safekeeping” to protect the organs. A physical manipulation, like a massage, releases the toxins back into the bloodstream and this would cause a flare. If more intense detox is done at that point, or the toxins are excreted /neutralized through liver, kidneys or sweating, we start feeling better.
If the immune system is working well at this point and the detoxification pathways are doing their job, I guess one could have a combination of a flare and a herx, as massage will also move out the bugs hiding in the lymph nodes and thus enable the immune system to go after them.

As most of us seem to have some detoxification problems and still often feel better a few days after the massage, it has to be the positive effect of stimulating the lymphs, easing the removal of toxins.
So even though massage releases the toxins (possibly some hiding bugs, too), it also enhances their removal. That would explain why gentler form of the massage feels more beneficial!

Interestingly, toxins stored in the fatty tissues may be the reason for problems with losing weight. FIR sauna, by promoting sweating, pulls the toxins out of fatty tissue and thus should make the weight loss easier! And if weight loss does happen without detox through sauna, one feels like total crap. And again, once the load is cleared up, one will feel better.
I lost 16 lbs in less than 2 months and that was the only explanation that made sense of why I felt so terrible. It took a few months to get back to feeling better.
I always feel exhausted and achy after the massage but it lasts only a couple of days and then I feel much better.
So detox, detox, detox IS ALWAYS a good way to go!

RUTH, it might help (though not necessarily clear) conjunctivitis, if you checked whether you developed an allergy to down/feathers and dust or have developed some food allergies. Removing them for a couple of week should bring about change for better if the allergy contributes to it.
Prior to abx, when all crazy symptoms started showing up, I started waking up with red eyes that were also swollen and eventually developed discharge. I did allergy testing which to my surprise showed allergy to down/feathers and dust. I had never had those allergies earlier, so without the test I would have never even considered them as a trigger. Getting rid of down pillows and comforter and making sure there is no dust in my bedroom, helped a lot! Unfortunately the problem has persisted, conjunctivitis never disappeared for good, but it really eased up a lot.

Sorry for bringing up the detox again, I just wanted to add that the only time my eyes looked normal, was when I did very intense daily detox for a minimum of 2 weeks, while staying off all allergens.
My eyes and 1 ear also react to dietary “insults” and upon ingestion of starches, especially anything with corn, my weaker eye turns immediately red, may start twitching and one ear starts itching inside.
So even if allergies are not at the root, they may exacerbate the issue.
Warm wishes, Krys

[Maz]

@Krys wrote:

This is my oversimplified understanding of what is happening:

Krys, not oversimplified, at all…that was a brilliant explanation of how things work and I enjoyed the read. Thanks! 🙂

[spacehoppa]

Hi Krys,

Thanks so much for the reply.

I agree with you about the massage and herxing/flare. It’s interesting because what’s been happening to me lately wasn’t a flare, that is, my joints didn’t worsen, but I did herx, that is, the neurological twitching symptoms, nausea and fatigue came to the fore.

I’m still not sure why, though my LLMD thinks it was because of the allergy vaccines I’ve been taking for the past month. Maybe, I’m still not sure it wasn’t an allergic reaction to the clarithromycin, but time will tell. It’s improving now, though I do still feel pretty tired, so hopefully I’ll be able to continue to take the allergy vaccines and my body will get used to them.

I think you’re right that my fibromyalgia was stored toxins, which is why the lymphatic massage that the osteopath has been doing has relieved me of the pain in my ribcage and back. I used to flinch with pain even if touched. I guess 24 years of stored toxins makes one’s flesh hurt! I do think that even if the osteo is making me herx/flare, it is still worth doing, as I am managing on far fewer meds lately and generally feeling more well, apart from the herxes.

So many changes means that it’s hard to isolate a cause and effect.

I think you’re right about the eye allergy. Having been tested for allergies lately and seeing just how many things I am allergic to unknowingly, I think it’s a distinct possibility. I washed my pillows this weekend, in case it’s dust, but you’re right I should try a different sort of pillow as well. The allergies I have are mostly to my own hormones – oestrogen, histamine, progesterone and of course, I was almost at the top of the range allergic to anaerobic and aerobic bacteria. So annoyingly, I’m most allergic to stuff that my body is exposed to all the time! Certainly I notice many symptoms worsen with my fluctuating oestrogen levels. (I can’t tolerate the contraceptive pill unfortunately – too allergic probably).

Anyway, next time I’m at Breakspear I’ll ask to get tested for dust and feathers. My eyes went dry immediately upon ceasing the abx, so maybe they were helping keep something at bay. Hard to say. Anyway, I’ve also been slack with my paleo diet lately, and so need to get back on track with that as well.

Thanks for taking the time to write. I’ve been a bit overloaded with work and illness lately to get my replies in. I’ve had a diarrhea bug and a bad cold in the past 7 days alone. Honestly, I think sometimes my kids are trying to kill me with their constant viral infections 😆 .

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