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Not sure what to do about herbs.

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Posted 1/24/2023 8:37 AM (GMT 0)
Hey everyone - Sorry if this is a repeat, I might have posted about this prior to the holidays but I'm more sure of what's going on now. Looking for opinions.

I was on herbs for over a year with no problems. One or two minor herxes and then nothing for better or worse, which was disheartening. But, I knew I tolerated them very well, titrated up within a couple weeks to full doses.

Well, since starting abx I backed off of some of the herbs just to not overload my body. When I re-introduced them, I started getting some herxing, which was pretty neat and cool to see them work synergistically with the abx (black walnut in particular). However, I've also started getting neck pain from Japanese Knotweed (and maybe the black walnut, haven't isolated that yet) which I literally used to take multiple droppers of!

In my opinion, this neck pain doesn't really seem herx like. When I herx, I get the very classic flu-like symptoms, chills, etc. This pain just comes on within 1/2-1 hour of taking herbs and eventually goes away after a few hours, sometimes lasts all day and suddenly lifts. It's also not particularly like my other mast cell reactions, though I do sometimes have my joints all start clicking as though they are looser, but mcas stuff for me is typically flushing, twitching, itching, trouble breathing, and other unpleasant "-ing's", lol.

I'm pretty sure I have cranio-cervical instability, maybe from bartonella causing some hypermobile joints, not sure (I do not have EDS or typical hypermobility, but my large joints are unstable). I was able to solve a big portion of my pain by going to a nucca chiropractor and stabilizing my mast cells, but when I take these herbs, that pain comes back. It has me a bit perplexed, wondering if maybe it's a mast cell reaction even though it's unlike my other mcas reactions.

Basically, I'm wondering what you folks would do. Would you keep trying the herbs? I'm annoyed because I really want to use herbs in conjunction with abx, especially if now they seem to be actually doing something. I've backed way off, I went off them entirely for a few weeks and just tried to re-introduce 1 drop at a time, got up to 4 drops black walnut and 2 drops JK and started getting the neck pain again. I was always shocked and kind of in disbelief when people said they couldn't tolerate 1 drop of something, but lo and behold, here I am!

Thanks in advance!
Posted 1/24/2023 8:38 AM (GMT 0)
Also, it's a given that I will talk to my llmd about this. I am just curious if others have been in a similar situation or have experience/advice to offer.
Posted 1/24/2023 6:50 PM (GMT 0)
its a tricky one MS

from what you describe its sounds like the reactions you are having line up in time absolutely perfectly with the doses of herbs - in fact it sounds like they are almost like clockwork - is this really so ?

i only ask as when i have herx reactions to herbs - eg from stepping up a dose it can often take 2 or 3 days before i really know i'm getting herx like symptoms - fatigue, disturbed sleep, increased body ache etc - rarely such specific ones as yours and never within hours - unless i took a huge dose of something

if its really within an hour or so and every single time you take the herbs - even at the same dose as you have for weeks before - then think its likely something else other than herx

eg maybe MCAS or something similar

if that is the case then i think you pretty much have 2 options

1, stop taking the herbs ( which i know you don't want to do )
2, try to manage the reactions with MCAS related approaches - and see if that helps

eg antihistamines, mast cell stabilisers, mind body techniques like DNRS etc etc

others here have more input on MCAS as its not something i have dealt with myself as far as i know

sorry i cant be of more help
Posted 1/25/2023 12:41 AM (GMT 0)
Having trouble breathing is not ok. I can't answer your question unless you state what it is you are taking. You must realize that a herx is a herx, but there is also such a thing as side effects and toxicity from too much of a particular medication. I am a pharmacist - will be glad to help you if you can be more specific on the meds/herbs you are taking. Are the only herbs black walnut and JKW? also, what brands, bc that can make a difference too.

Post Edited (Chapelle) : 1/24/2023 5:02:37 PM (GMT-8)

Posted 1/25/2023 12:55 AM (GMT 0)
Often when I herx, it causes tightness and pain in my neck, then becomes a migraine.

Oil of Oregano causes crazy emotions, and today I restarted it. Within an hour, I was crying for no reason. That’s on a very small amount.

With that said, my thought is it is a herx you are experiencing, for what it’s worth.
Posted 1/25/2023 6:41 AM (GMT 0)
Garzie - yeah it seems to be fairly lined up with when I take my herbs, not exactly clockwork but almost, which makes me think it's not a herx. My general thought has been MCAS, but it's not multi-system (which is what the doctors say should be happening for a mast cell flare), it's just the neck pain. Which leads me to think, maybe it's more of a flare?

Chapelle - I should have clarified. This breathing trouble is the same issue I've had since I was 8 and my symptoms started, and I wasn't saying that was the problem here. It's not something I'm getting from the herbs, I get it from high histamine foods and cardio so I know it's likely related to MCAS. It's not okay, I agree, but I've been dealing with it for over 20 years and gaslit by doctors about it so I've learned to deal. It's not actual anaphylaxis throat closing, but more of a bronchoconstriction - I think some people here might call it air hunger, which is closer. I actually used to call it air hunger before I even knew about tick borne disease. But anyway I've got it under control - I appreciate that you zoned in on this though, it's concerning for sure.

Toxicity is not something I had considered, especially since I'm taking only 3-4 drops of the herbs, but that's interesting. I am in Canada, we get our herbs from St. Francis farm in Ontario - most of the ND's use them. I don't know the concentrations, unfortunately. Yes, just taking JK and BW. I was taking cryptolepis, sida acuta/houttynia and a lyme blend with cats claw, andrographis, JK, baikal skullcap, but I started getting the same neck pain issue with that so I stopped and decided to just try one herb at a time.

To control my MCAS I take cromolyn 300mg 4x daily, 10mg claritin once a day, and quercetin. I try to stay away from too many antihistamines. For bartonella I'm on hydroxychloroquine, clarithromycin, rifampin. Other things I take: very low dose t3; curcumin; ADP oregano; garlic; and I was doing glutathione semi-regularly until I recently noticed it making my brain fog worse. I also take a methyl b vitamin complex very irregularly - I should be more consistent but I got anxious about overmethylating so I backed off. Currently taking priority 1 phase 2 biofilm buster. Can't take probiotics because it flares my MCAS, but I'm going to try again soon. For detox I drink lemon water and use epsom salt baths, have been doing lower heat infrared yoga and occasional lymph drainage massages, and just ordered tri-salts. I get regular bloodwork with ECG's to ensure the combo of plaquenil and abx are not impacting my heart, so far so good. Oh, I'm also on lodalis as a binder.

running wild - thank you. Yeah it's really hard to tell, because it does have that similar feeling of suddenly lifting/clearing that I have during my more typical herxes (the flu-like ones), which my doctor strongly associates with herxing, but it comes on so suddenly and with such regularity that it really seems like more of a drug reaction. I hear so many people saying they get neck pain with herxing though, it does make me wonder.

Post Edited (morningstars) : 1/24/2023 10:47:54 PM (GMT-8)

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