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Herxing or Mast Cell Activation? Or both?

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Posted 8/26/2018 3:54 PM (GMT 0)
about five weeks ago I started minocycline 50mg twice daily, and the following week began having histamine responses to food like I experienced after four months into my previous bactrim regiment. I started taking 1000mg of vitamin C daily which seemed to counteract it until I raised the dose of minocycline to 100mg twice daily as my LLND instructed.

I’ve been taking the 100mg of mino twice daily for exactly a week and believe I have been experiencing classic herx symptoms (chills, muscular weakness/pain, joint pain, neck aches, increased thirst) but then the histamine responses began again yesterday, causing swelling of the eyes and mouth, congestion, and respiratory difficulty.

I don’t think its simply an allergy to the antibiotics, as it happened with both bactrim and minocycline and did persist for awhile after I stopped the bactrim and was antibiotic-free. It also doesn’t occur immediately upon taking either one, but rather in response to other triggers (mostly food).

My question, then, is: are histamine responses/allergic reactions just another normal herxing symptom? Or am I dealing with a separate issue like Mast Cell Activation? Or is it both, with MCAS triggered by herxing? Has anyone else ever experienced anything similar? I fear the latter, as it makes it seemingly impossible to recover from lyme because everytime I start to heal my immune system overreacts.

I know for one thing that it responds to antihistamines, which is what makes me think its Mast Cell related. I dislike antihistamines though and would prefer not to only treat this with the fexofenadine my allergist prescribed me. I also wonder if increasing the dose of vitamin C could help once again, but am wary of doing so since I have read that in addition to causing digestive issues too much vitamin C can actually have the opposite effect and over-activate the immune system instead of regulating it.
Posted 8/26/2018 3:58 PM (GMT 0)
Some of it may be mast cell related. Has your doctor tested your prostaglandin levels? Is your doctor informed about MCAS/MCAD? My doctor did a scratch test as well as a cell trends/prostaglandin level test to confirm my MCAS dx. Although mine is only idiopathic due to the underlying bartonella infection. My current regimen has me on Claritin in the morning and Zyrtec at night everyday to counteract some of the histamines. And I'm on ramotidine (Zantac) for my histamine-2 reactions. This is all on top of my abx, detox, and supplements. I think the vitamin-c is great but there is no harm in taking OTC antihistamines and I think my doctor finds it preferable to rx antihistamines provided I already have a hefty medication list.

Happy healing!
Posted 8/26/2018 4:06 PM (GMT 0)
Hmm, sometimes I wonder if mast cell and herx issues are interrelated. i've found that my herx symptoms have been dampened by various types of antihistamines. Have you tried any antihistamines? could talk to your llnd about that as a potential option. One doc of mine had me on singular and that really helped. I have heard that ketotifen can be helpful as well, has helped my mom (also has lyme). But there are others as well that are more easily availble OTC (like xpeetzax mentioned).

Lonnie Marcum wrote a great piece with various options to help deal with mast cell, might give you some ideas: /www.lymedisease.org/lyme-sci-mcas-agony/

It does sound like you are herxing. I don't know about MCAS response, but my guess would be finding the right tool (like antihistamines) would likely make treatments more tolerable.
Posted 8/26/2018 4:16 PM (GMT 0)

xpeetzax said...
Some of it may be mast cell related. Has your doctor tested your prostaglandin levels? Is your doctor informed about MCAS/MCAD? My doctor did a scratch test as well as a cell trends/prostaglandin level test to confirm my MCAS dx. Although mine is only idiopathic due to the underlying bartonella infection. My current regimen has me on Claritin in the morning and Zyrtec at night everyday to counteract some of the histamines. And I'm on ramotidine (Zantac) for my histamine-2 reactions. This is all on top of my abx, detox, and supplements. I think the vitamin-c is great but there is no harm in taking OTC antihistamines and I think my doctor finds it preferable to rx antihistamines provided I already have a hefty medication list.

Happy healing!

I don’t think I’ve had my postaglandin tested, though my allergist/immunologist did test my tryptase (which is supposed to me a MCAS indicator) but it was normal. I also had a full food allergy panel done through both blood and scratch testing and all were negative. This was all from my immunologist, but my LLND on the other hand isn’t super informed about MCAS which is why she suggested I see a specialist. My LLND did suggest turmuric which I think I might try before more antihistamines.
Posted 8/26/2018 4:23 PM (GMT 0)

sebreg said...
Hmm, sometimes I wonder if mast cell and herx issues are interrelated. i've found that my herx symptoms have been dampened by various types of antihistamines. Have you tried any antihistamines? could talk to your llnd about that as a potential option. One doc of mine had me on singular and that really helped. I have heard that ketotifen can be helpful as well, has helped my mom (also has lyme). But there are others as well that are more easily availble OTC (like xpeetzax mentioned).

Lonnie Marcum wrote a great piece with various options to help deal with mast cell, might give you some ideas: /www.lymedisease.org/lyme-sci-mcas-agony/

It does sound like you are herxing. I don't know about MCAS response, but my guess would be finding the right tool (like antihistamines) would likely make treatments more tolerable.

I am currently on 180mg of fexofenadine (allegra) daily, but am eager to find something else as even “non-drowsy” antihistamines like allegra knock me out. Perhaps my sensitivity to them has something to do with all of this.

Thanks for the link, I checked it out. It definitely makes sense that chronic infection can cause this issue, but it feels overwhelming to try and treat the two together as it seems things can really spiral.

Post Edited (SicklySkald) : 8/26/2018 10:28:24 AM (GMT-6)

Posted 8/26/2018 4:30 PM (GMT 0)
Interesting, that could be. Sometimes it's worth doing a bit of trial and error to see what works. Does the allegra seem to help? you been on it for a while?

The other thing is this, you just recently upped the mino dose, so it's possible that those herx/MCAS symptoms will wane in the near future. Always hard to predict, but possible.

No matter what, I think trying to find tools to help manage the symptom response you get from antimicrobials will be good. Because it may be something you'll face as you continue various effective protocols. It could just be that effective antimicrobials give you both a herx/MCAS response, and they could both be interrelated.

Btw, are you incorporating various detox methods? it could be that finding the right detox strategies would help some of those symptoms as well.
Posted 8/26/2018 4:34 PM (GMT 0)
The NP at my LLMD practice suggested I take Quercetin. Maybe give that a try if you want something drug-free.

(it may help some with MCA)
Posted 8/26/2018 4:57 PM (GMT 0)

sebreg said...
Interesting, that could be. Sometimes it's worth doing a bit of trial and error to see what works. Does the allegra seem to help? you been on it for a while?

The other thing is this, you just recently upped the mino dose, so it's possible that those herx/MCAS symptoms will wane in the near future. Always hard to predict, but possible.

No matter what, I think trying to find tools to help manage the symptom response you get from antimicrobials will be good. Because it may be something you'll face as you continue various effective protocols. It could just be that effective antimicrobials give you both a herx/MCAS response, and they could both be interrelated.

Btw, are you incorporating various detox methods? it could be that finding the right detox strategies would help some of those symptoms as well.

The allegra helps with the facial swelling but not as much with the respiratory difficulty. I also have an albuterol inhaler for that which gives some relief. I haven’t been on the allegra very long, mostly because I ony take it when I absolutely have to because it adds to my fatigue and brain fog.

As for detoxing I am using Vital Nutrients detox formula which contains glutamine and milk thistle, and I use alkaseltzer gold as needed. Any other suggestions?
Posted 8/26/2018 6:02 PM (GMT 0)
I have struggled with this for the past 1.5 years or so, and have mostly come to the conclusion that omnicef was the culprit for me anyway. Although you were not on cephalosporins, certain abx deplete DAO in the gut, causing histamine to get out of control (DAO counteracts histamine). I first noticed there was a histamine issue when I developed daily heartburn, itchy skin, and dermatographism. I did not have any other histamine symptoms like gut issues or respiratory issues, nor did I react to certain food or chemicals. I found instant relief from taking zyrtec and zantac, and have been on them for about a year now. I have not had a dose of omnicef or ceftin now for 4 months and my skin is back to normal, and I get heartburn only on occasion now. I also started taking DAO supplements just for peace of mind.
So I guess what I am suggesting is your MCAS issues may be due to DAO degradation from the abx. I'm not a doctor, but try switching up some meds and consider pulse dosing to limit toxicity. The good news is it would appear your histamine issues are not the root of your problems, and should be manageable through tweaks in your treatment regimen, and ultimately calm down.
Posted 8/26/2018 6:03 PM (GMT 0)
Those detox methods sound good. I'll throw out some suggestions: infrared sauna (one of the most helpful for me), red root, burbur, pinella, binders like activated charcoal, bentonite clay, chlorella, modified citrus pectin... epsom salt baths (although usually want to avoid magnesium if you are taking minocycline).

Per usual, just read up on anything before taking it. A lot of those binders like activated charcoal need to be taken a couple hours away from food or medicines.
Posted 8/26/2018 8:56 PM (GMT 0)
I’ve been curious about activated charcoal, I actually looked into it as a toothpaste/mouthwash ingredient of all things, as I’ve had angiodemic reactions to the mint used in toothpaste, chewing gum, etc. I looked into epsom salt baths too but have been unable to try it as I only have a shower and no tub.

I just got back from picking up some more vitamin C and some turmeric. I figure that if 1000mg of vitamin C could counteract the mast cell activation from 100mg of minocycline, maybe taking 2000mg or so of vitamin C daily will work better now that I’m on 200mg of minocycline daily. Thought I’d give the turmeric a try while I’m at it as well since I’ve heard it has histamine regulating properties.

We’ll see how it goes for the next few days, thank you all for the suggestions.
Posted 8/26/2018 9:16 PM (GMT 0)
You can do foot baths with Epsom salts.

Just get a big bucket.
Posted 9/2/2018 12:17 AM (GMT 0)
Thought I’d revive this thread as its been a few days, and I just experienced a fairly acute “allergic” response to some spicy food. My tongue swelled and went numb, my lips inflated, eyes are swollen and have dark rings, my chest constricted, and I felt a sudden fatigue and light headedness that essentially blacked me out. When I woke up I took fexofenadine and some albuterol and got it under control, though now I’m left with a pounding headache.

This is all after I increased my vitamin C intake as well as added turmeric and now quercetin w/bromelaine to my daily regimen, none of which has seemed to much help in controling my mast cells. These reactions only occur while I’m on antibiotics, and are beginning to make me question everything again. All week I’ve been experiencing symptoms such as muscle aches, chest pain, and chills that I thought (and hoped) were due to herxing, but now having had to take an antihistamine to control the allergic reaction those other symptoms are clearing up as well. This makes me wonder if I haven’t herxed at all but rather have just been having an ongoing histamine response.

The fact that this only happens while I’m on antibiotics makes me want to believe that this is proof the antibiotics are working, but there is so much overlap with the symptoms of lyme and MCAS that I’m not even sure whats what anymore. I’m not sure what to do and I feel so stuck because the antibiotics I need to treat the lyme with only aggravate my mast cells.

Should I take increased mast cell activity while on antibiotics as a sign that they are working?
Posted 9/2/2018 12:29 AM (GMT 0)

SicklySkald said...
Thought I’d revive this thread as its been a few days, and I just experienced a fairly acute “allergic” response to some spicy food. My tongue swelled and went numb, my lips inflated, eyes are swollen and have dark rings, my chest constricted, and I felt a sudden fatigue and light headedness that essentially blacked me out. When I woke up I took fexofenadine and some albuterol and got it under control, though now I’m left with a pounding headache.

This is all after I increased my vitamin C intake as well as added turmeric and now quercetin w/bromelaine to my daily regimen, none of which has seemed to much help in controling my mast cells. These reactions only occur while I’m on antibiotics, and are beginning to make me question everything again. All week I’ve been experiencing symptoms such as muscle aches, chest pain, and chills that I thought (and hoped) were due to herxing, but now having had to take an antihistamine to control the allergic reaction those other symptoms are clearing up as well. This makes me wonder if I haven’t herxed at all but rather have just been having an ongoing histamine response.

The fact that this only happens while I’m on antibiotics makes me want to believe that this is proof the antibiotics are working, but there is so much overlap with the symptoms of lyme and MCAS that I’m not even sure whats what anymore. I’m not sure what to do and I feel so stuck because the antibiotics I need to treat the lyme with only aggravate my mast cells.

Should I take increased mast cell activity while on antibiotics as a sign that they are working?

IMO, you should take this as a sign that you are in DANGER. Sounds like you had an anaphylactic type reaction, which can be deadly. Please report this to your doctor ASAP.
Posted 9/2/2018 12:57 AM (GMT 0)

WalkingbyFaith said...
IMO, you should take this as a sign that you are in DANGER. Sounds like you had an anaphylactic type reaction, which can be deadly. Please report this to your doctor ASAP.

I know, its just that last time this was happening the advice was to stop treatment, which I’m sensing is going to become the trend. Thats not what I want to do but it looks like mast cell activation is going to make it impossible to safely treat these infections and I don’t know what other choice I have but to abandon treatment.
Posted 9/2/2018 3:47 AM (GMT 0)

SicklySkald said...

sebreg said...
Hmm, sometimes I wonder if mast cell and herx issues are interrelated. i've found that my herx symptoms have been dampened by various types of antihistamines. Have you tried any antihistamines? could talk to your llnd about that as a potential option. One doc of mine had me on singular and that really helped. I have heard that ketotifen can be helpful as well, has helped my mom (also has lyme). But there are others as well that are more easily availble OTC (like xpeetzax mentioned).

Lonnie Marcum wrote a great piece with various options to help deal with mast cell, might give you some ideas: /www.lymedisease.org/lyme-sci-mcas-agony/

It does sound like you are herxing. I don't know about MCAS response, but my guess would be finding the right tool (like antihistamines) would likely make treatments more tolerable.

I am currently on 180mg of fexofenadine (allegra) daily, but am eager to find something else as even “non-drowsy” antihistamines like allegra knock me out. Perhaps my sensitivity to them has something to do with all of this.

Thanks for the link, I checked it out. It definitely makes sense that chronic infection can cause this issue, but it feels overwhelming to try and treat the two together as it seems things can really spiral.


Inositol. Both regular and hexaphosphate. It's a strong, natural mast cell stabalizer without the drowsiness. You could also try butterbur- Buhner recommends it. And quercetin
Posted 9/2/2018 7:57 PM (GMT 0)
The chills sound like a herx to me. I got them from Doxy which as you know is similar to Mino. When I upped it from 300-400mg about 4 days later I would get debilitating severe nausea and shaking chills which I think could be a Babs herx (though I guess possibly Borrelia) since it does have some anti-malarial effects.
Posted 9/2/2018 8:16 PM (GMT 0)

Aerose91 said...

SicklySkald said...

sebreg said...
Hmm, sometimes I wonder if mast cell and herx issues are interrelated. i've found that my herx symptoms have been dampened by various types of antihistamines. Have you tried any antihistamines? could talk to your llnd about that as a potential option. One doc of mine had me on singular and that really helped. I have heard that ketotifen can be helpful as well, has helped my mom (also has lyme). But there are others as well that are more easily availble OTC (like xpeetzax mentioned).

Lonnie Marcum wrote a great piece with various options to help deal with mast cell, might give you some ideas: /www.lymedisease.org/lyme-sci-mcas-agony/

It does sound like you are herxing. I don't know about MCAS response, but my guess would be finding the right tool (like antihistamines) would likely make treatments more tolerable.

I am currently on 180mg of fexofenadine (allegra) daily, but am eager to find something else as even “non-drowsy” antihistamines like allegra knock me out. Perhaps my sensitivity to them has something to do with all of this.

Thanks for the link, I checked it out. It definitely makes sense that chronic infection can cause this issue, but it feels overwhelming to try and treat the two together as it seems things can really spiral.


Inositol. Both regular and hexaphosphate. It's a strong, natural mast cell stabalizer without the drowsiness. You could also try butterbur- Buhner recommends it. And quercetin

My practitioner at the J clinic told me to take the Quercetin..so I am. tongue
Posted 9/2/2018 8:18 PM (GMT 0)

ToddPaul said...
The chills sound like a herx to me. I got them from Doxy which as you know is similar to Mino. When I upped it from 300-400mg about 4 days later I would get debilitating severe nausea and shaking chills which I think could be a Babs herx (though I guess possibly Borrelia) since it does have some anti-malarial effects.

I've been trying to figure out the chills...and I'm starting to think it's from the minocycline....because when I think back to when I first went on it...with nothing else ...so no rifampin for bart yet...I got the chills really bad...I'm thinking maybe I'm not herxing, but the mino gets into the brain so well that it's causing limbic excitability/irritability/agitation...or something.

What I do know - is I HATE them.
Posted 9/2/2018 8:44 PM (GMT 0)
Chills are a regular symptom for me so that's how I know it was a herx but as we know everyone is different.
Posted 9/2/2018 11:48 PM (GMT 0)

ToddPaul said...
Chills are a regular symptom for me so that's how I know it was a herx but as we know everyone is different.

So you had them even before treatment.

I don’t think I did - but not 100% sure
Posted 9/8/2018 11:38 AM (GMT 0)
I feel that I have MCAD which started after taking minocycline. I had a terrible herx with mino and then I started reacting to anything that kills bacteria. I haven't been able to treat Lyme due to horrific flares. I take doxepin and ketotifen (both are mast cell stablizers) which have helped with weight loss, insomnia (could only sleep 3 hours or so and would wake with heart palps, sweats and that would be it for sleeping), depression, and fatigue. I am about to start DNRS (dynamic neural retraining system) to see if it will help with MCAD.

Post Edited (dmw52) : 9/8/2018 3:29:52 PM (GMT-6)

Posted 9/8/2018 7:25 PM (GMT 0)

dmw52 said...
I feel that I have MCAD which started after taking minocycline. I had a terrible herx with mino and then I started reacting to anything that kills bacteria. I haven't been able to treat Lyme due to horrific flares. I take doxepin and ketotifen (both are mast cell stablizers) which have helped with weight loss, insomnia (could only sleep 3 hours or so and would wake with heart palps, sweats and that would be it for sleeping), depression, and fatigue. I am about to start DNRS (dynamic neural retraining system) to see if it will help with MCAD.

That sounds very similar to what is happening with me, I only have reactions while on antibiotics. Though the reactions themselves are triggered by irritants, they’ve stopped after having been off of antibiotics for a week. I scheduled an appointment with a holistic allergist/llmd in hopes they will be able to help me with this as I don’t have any other idea what to do.
Posted 9/8/2018 7:58 PM (GMT 0)
i wonder what role liver toxicity plays in mcas flares....i usually get them at the very end of my abx pulses....maybe liver is struggling??
Posted 9/8/2018 8:16 PM (GMT 0)

dmw52 said...
I feel that I have MCAD which started after taking minocycline. I had a terrible herx with mino and then I started reacting to anything that kills bacteria. I haven't been able to treat Lyme due to horrific flares. I take doxepin and ketotifen (both are mast cell stablizers) which have helped with weight loss, insomnia (could only sleep 3 hours or so and would wake with heart palps, sweats and that would be it for sleeping), depression, and fatigue. I am about to start DNRS (dynamic neural retraining system) to see if it will help with MCAD.

I have looked into the DNRS too. I wonder sometimes if my brain is just on a continuous loop and the cycle need to be stopped.

If you do it, please let us know if it helps
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