Pretty bad neuro-lyme flare, need advice please.

Hi Wintersun

Welcome to the community!
I’m just on my way to bed - but wanted say “hi”.

I’m sure you will get some helpful suggestions and responses to your post in the morning

hello and welcome

ref the anxiaease

the issue many find with such multi-ingredient formulas is its a once size fits all approach -
whereas people reactions to each ingredient vary quite dramatically in the chronic illness community

for every ingredient some will say - "it was a miracle for me" - and others will say "did nothing for me at all" - or even "had the opposite effect - could not sleep" etc - which is perhaps more a reflection of how different we all are than the efficacy of the product

i don't see any major issues with the ingredients list - and you can land lucky on a product that seems to work for you out of the gate - but just as often its common to have reactions to one or more of the ingredients - for this reason, especially if you are a person prone to be sensitive to medications etc - it might be better to try individual components one at a time an figure out what works best for you

the syntol is an unusual product - and suffers the same issues in some regards

a few things to try to understand

there is a significant amount of oligosaccharides in it -
many people with gut issues are sensitive to such prebiotics - as they can flare symptoms
do you know how you react to oligosaccharides alone?

similarly probiotics are a mixed bag - again many people cannot tolerate them well - or again they can flare symptoms
can be strain specific
not all probiotics are good for all of us - for instance in my case all tend to flare systemic symptoms

lastly there are a lot of enzymes in that product - some are also fibrinolytic enzymes - eg serrapeptase - that can have powerful effects in chronic infections as they can start to break down biofilms systemically - not just in the gut - many members here and on other forums report significant - even massive herx - from various enzymes - including those listed - just a heads up

i note that you are having difficulty figuring out where you are in your treatment and what disease process is driving symptoms - thats something pretty much all of us struggle with - but i think the combo products may perhaps be making this more difficult for you

If you got destroyed by nattokinase and that’s a relatively mild enzyme then you have a lot of biofilm.

If you don’t have enough to kill whatever it is releasing then you will get more symptoms but it will settle down if you stop the enzyme.

If you have enough killing agents then it will kill whatever is released and you will get a herx.

Garzie --

Hey, what's goin on. Thanks for taking so much time to type out such a detailed post.

Just wanted to say that I agree 100% with taking one specific thing at a time. It's much harder to figure out what's helping or hurting when there's like seven different ingredients in a complex. I mean, would it be a dumb approach to just take maybe a quarter or an eighth of that pill over a week or two to see how I respond? Or should I just start off with only ashwaganda or holy basil first? I bought that AnxiaeEase because I had pretty good results with that company, and I kind of trust them. I also feel like trying so many individual things could take months and I'm running out of time here.

I honestly have no idea how Oligosaccharides affect me by themselves. But, that product has been helping me on and off for years. My white tongue always seems to get better when I take it on a consistent basis. Yeah, the herxheimers kind of suck, but I can handle them decently well.

Interesting about the probiotics as well. But, I've been using those probiotics with zero problems for maybe 1.5 - 2 years. Am I just getting hypersensitive since that last cystbuster?

Indeed, those enzymes are quite powerful in Syntol AMD. That's one of the reasons why I take it. I generally monitor myself closely, and increase detoxification when needed if I feel a herx coming on. I generally maintain two pills quite well. Maybe about 14 days of two pills I start to feel the herx coming on. I generally take a couple days break to give my body a rest.

Yeahhh, I've been having a lot of difficulty finding the right combination of effective treatments. It just always seems like I get slammed by herxheimers after a period of time and I end up changing my protocol. I keep on questioning if they are actually herxes or just reactions. IT always FEELS like a herx because I always feel better when I start taking it and then it builds up and hits me strongly after a period of time. For instance, that nattokinase supplement was making me feel really good for the first one to two months and then I just got decimated. If it was an MCAS reaction, I would notice immediately, right? I generally get clogged sinuses and chest tightness when I have an MCAS reaction. Jeez, I dunno. Sometimes the neuro herxes get so bad that my parents get extremely worried and try to tell me I'm getting worse and not experiencing herxes. I was making so much progress off of antibiotics for like 6 to 8 months and my blood test always came back pretty good.[ I know that the lyme tests are highly inaccurate].
I was feeling better than usual, my anxiety was lowering. I started to get issues again once I PUSHED harder than I ever have with lyme – I achieved around 40 miles of walking in 7 days. It was a major benchmark for me. Honestly, I felt like there was a cascade of herxheimers since then. Then, I was making pretty good improvement, took nattokinase, and got destroyed again.

its really hard to advise well knowing so little about your case

in general i feel this illness is such a complex beast that its extremely challenging to figure it out with trial and error - yet, we often have little else to go on and are constantly struggling with this interpretation puzzle.

for me - when those trials involve multiple ingredients at once - it becomes near impossible to interpret what does what without entering the realms of supposition and belief - and, this over the long run causes more false leads and missed steps than going the longer but surer route. The tortoise and the hare story - if you see what i mean.

although i understand an share the feelings of desperation for immediate releif - for beating the illness - in the long run - its actually more important to learn the lessons ( what does what and why - in your individual case) than to get immediate releif.

overall if you already have a product - by all means try it - you have spent the money already after all - but perhaps just be aware that if it has 7 ingredients - and, in the best case you find it helps you - you still will be left guessing as to why, and may find there are 7 or 10 or more possible reasons that will be very hard to trim down to what is really going on.

the only other guidance i would offer at a high level view - and again i know very little of your overall story - and i certainly do not have all the answers - but since you posted her for views i will offer this one

my observation would be that from what you describe, the things you are trialling seem to mostly be what would be considered by most to fall under the heading of supportive therapies.
eg probiotics, prebiotics, enzymes, tudca, japanese knotweed ( predominantly an anti-inflammatory)
i am not suggesting this wrong - i have incorporated many of these things myself

i would just say that most people here, and those under the care of LLMD's tend to find that they need to incorporate some form of powerful anti-microbial (plant based or pharma) as the foundation of actual treatment in order to move forward ( unless they are following one of the more esoteric treatment paths - rife, bee venom etc etc ) - and then add these other things as adjuncts or supportive therapies
otherwise the supportive therapies run the risk of being mainly symptom suppression - while the root cause of illness (assuming it is infection) goes on unchecked.

perhaps this is the plan already ?

many people here find their progression or ramp up of treatment is governed by the tolerability of "herxhiemer type" reactions - so you are in good company there

the other issue alluded to - is the issue of how to gauge progress in treatment
a white coating on the tongue is not in my view a reliable indication of treatment progress
and there are very few blood tests - if any - that are reliable for that either (CD57+ count is considered useful by some LLMD's in tracking lyme treatment progress - but this is highly contested by others - and there are some very new ones emerging but these are as yet not validated )

symptom regression is a useful indicator - perhaps the best one in some ways - but here there are also some difficulties - since so many symptoms are largely or even purely subjective - and since the human brain is so full of biases in the first place - this has to be done with great care to avoid unconscious bias rendering it little more than a day to day barometer of mood.

these are some of the complexities that many of us struggle with in self treating with this illness - i believe the first step in overcoming them is to recognise them - so they can be taken into account and a more robust approach taken - for a better chance of a positive outcome - and that the reason for mentioning them here.

Fair point Garzie. I will clarify that it wasn't meant as clear-cut evidence but I do think people's experiences should be taken into consideration.

It reminds me of Disulfiram which some Lyme patients got neuropathy from (some permanent), to the point where now LLMD's are warning for it as it only seems to happen in Lyme patients.

What I mean is that this is also not necessarily found in scientific literature but is found to happen in people's experiences.

So that's the same kind of idea where I was coming from. Just to be cautious about it.

I haven’t read all the posts.

Garzie:
“ my observation would be that from what you describe, the things you are trialling seem to mostly be what would be considered by most to fall under the heading of supportive therapies.
eg probiotics, prebiotics, enzymes, tudca, japanese knotweed ( predominantly an anti-inflammatory)
i am not suggesting this wrong - i have incorporated many of these things myself

i would just say that most people here, and those under the care of LLMD's tend to find that they need to incorporate some form of powerful anti-microbial (plant based or pharma) as the foundation of actual treatment in order to move forward ( unless they are following one of the more esoteric treatment paths - rife, bee venom etc etc ) - and then add these other things as adjuncts or supportive therapies
otherwise the supportive therapies run the risk of being mainly symptom suppression - while the root cause of illness (assuming it is infection) goes on unchecked.”

Garzie - I’m pretty sure Japanese knotweed is anti microbial not “ just” a supportive herb.

Having said that - I know many people over the years that haven’t had success - ie no herx or improvement from JW

Garzie, saraeli, lovefishing--

Thanks for taking the time to post everyone, I really appreciate it.

It seems as if I should have just posted my entire story to begin with. It would have probably been easier for ideas and suggestions to flow that way.

In any case, trying to formulate how to respond to the previous posts. Im kinda slow, lol

saraeli said...
Welcome to the forum!

Garzie gave you some good advice, and I'll elaborate on some of his points.

Ashwagandha and holy basil are both adaptogens, a class of medicinal herbs that are great but which often involve significant trial and error because they affect everyone differently. I find ashwagandha helpful and have taken it for years, but holy basil made me feel uncomfortably amped up and highly irritable at only one drop! Others feel jittery on ashwagandha and sleep peacefully with holy basil. So there's a lot of variation in how people respond. I would not try a formula with multiple adaptogens unless you have experience with both individually and find both helpful.

In general, I recommend that sensitive folks avoid multi-ingredient formulas because of potential sensitivities to particular ingredients, leading to wasted bottles of expensive supplements and no idea which ingredient bothered them. Plus with capsules, it's harder to start at a small dose and work your way up slowly - also a practice I strongly recommend.

I also would worry about the serrapeptase, especially if you reacted intensely to nattokinase.

The probiotic strain B. helveticus is thought to raise histamine levels. The other probiotic strains you take don't so maybe it would even out, but I thought I'd mention that just in case. What are you doing to manage your MCAS? From your description, I wonder if you're just experiencing systemic mast cell activation right now.

Ashwaganda was great for anxiety, but on the other hand it was an extremely heavy tired like I wanted to just k.o. lol .I don't think I'll try holy basil, then again it is different and effects everyone differently.