Feeling better (no herx) = no effect?

[dan062]

Hi folks,

I'm exploring the pathogen avenue at the moment.

My plan is to assemble a group of natural antibiotics, natural antivirals and natural anti helmenithics and try each group for a few weeks to see if I notice any improvement of my symptoms.

My question is this: to judge efficacy, what should my yardstick be: feeling better or experiencing a herx reaction?

If you just feel better (for a consistent period of time, to discount placebo) does this mean that your intervention isn't working? Do all organisms create herxes once they are effectively targeted or can 'die off' be painless to the host?

Separate question: if going down the natural route, does anyone know of any herbs that cover all pathogen groups (bacteria, viruses, fungii and parasites)? Garlic is one that (supposedly) comes to mind for me.

 

[vamah]

I think there can probably be a number of reasons why you might not experience a die off reaction. If the die off is very gradual, for instance, the reaction might be so mild you don't notice it. I would certainly not discount somthing that makes you feel better because you didn't notice a die off reaction.

 

[JAM]

I posted several links and my experience with Olive Leaf Extract on a blog earlier this week. http://forums.phoenixrising.me/inde...ience-with-olive-leaf-extract-and-links.1678/

OLE is supposed to hit bacteria, virus, fungus, etc. but I have only done research on the virus. Everything I've read says that if you don't herx it isn't working, but there isn't much good research on the subject. At this point I think we are all experimenting.

How long have you been taking them? It took a week for me to have a Herx reaction. I felt fantastic that first week.

 

[dan062]

Hi again, @JAM.

Thanks for sharing your blog post. Very interesting that antivirals take as long as almost 3 years before they clear out the infection. That would tie in with the idea of some people simply making natural (unmedicated) recoveries in milder forms of CFS that take about that long -- while others, with more severe infections, may take far longer to start feeling better.

This is actually only my first day taking the immune supplement (the usual mushrooms that are supposed to be good for your immunity). I was putting out the post to know what to expect in advance, and whether to discontinue them if they were having no effect.

So far -- nothing (I have about my usual levels of symptoms). But I'll wait two weeks before doing anything based on your experience with olive leaf.

One follow up question: is there any way of trying to figure out which pathogen you've got? It seems to be total guesswork as to whether it could be Lyme, babesa, bartonella, an echovirus, EBV, etc?

Perhaps in the absence of exact testing simply choosing an agent that targets all of them is the only course of action to follow.

Disappointing that everything with ME seems to come down to guesswork by patients doing layman research, while sick, to try figure complex medical cases out!

 

[JAM]

Hi again, @JAM.

Thanks for sharing your blog post. Very interesting that antivirals take as long as almost 3 years before they clear out the infection. That would tie in with the idea of some people simply making natural (unmedicated) recoveries in milder forms of CFS that take about that long -- while others, with more severe infections, may take far longer to start feeling better.

This is actually only my first day taking the immune supplement (the usual mushrooms that are supposed to be good for your immunity). I was putting out the post to know what to expect in advance, and whether to discontinue them if they were having no effect.

So far -- nothing (I have about my usual levels of symptoms). But I'll wait two weeks before doing anything based on your experience with olive leaf.

One follow up question: is there any way of trying to figure out which pathogen you've got? It seems to be total guesswork as to whether it could be Lyme, babesa, bartonella, an echovirus, EBV, etc?

Perhaps in the absence of exact testing simply choosing an agent that targets all of them is the only course of action to follow.

Disappointing that everything with ME seems to come down to guesswork by patients doing layman research, while sick, to try figure complex medical cases out!

I took mushrooms like that for a while and had no affect, good or bad. My general rule has always been that no change means it isn't doing anything to help. I usually give things at least a month to kick in, but the things that worked for me gave some change immediately.

My doctor tested for HHV-6 and EBV. I think there are tests for all of the options you mentioned, but there is some debate as to how accurate or relevant they are.

It is incredibly frustrating to have to be your own lab rat!

 

[Martial]

Its really a pretty complex thing, some people will herx severely depending on type of infections, some people will just feel a lot more sick for a while, others will start to feel significantly better then lose progress when they stop, some people might not even notice any changes for a while. The best thing to do is just keep with it in the long term because it takes a while for any significant recovery to happen. This is the basis of programs like Dr. Stephen Buhner, Dr. Lee Cowden, Dr. Zhang, Bryon White, etc.. It has a pretty good track record for success but what works for each person is pretty unique. You just need to tweak different doses and herbs for yourself and find what works best, keeping in mind the natural benefits of each herb to use for each symptom or infection.

 

[dan062]

Hi @JAM and @Martial

I'm torn between your two approaches.

I'd like to be patient with things, but I'd prefer something, like @JAM says, that has a definite effect either way (and, strange as it sounds, preferably one that makes you feel worse --the placebo effect and things that just help in a general way always seem to make you feel better).

Otherwise, how do you know that you're not throwing away money?

So far, like @JAM, the mushroom supplement seems to have zero effect on me, so I'm tempted to scratch it off my list and look for the next crop of things. Fortunately, with antivirals, it does seem as if there is quite a lot of stuff that's relatively available to chose from.

 

[dan062]

@JAM I also get the feeling that with lots of supplements generally the dosage must be minimal compared to what you'd get from eating the product in its natural state.

How much mushroom can you really fit into two gelatin capsules? Even with them being dried I can't imagine that much.

I suspect that for a lot of things taken as supplements, unless they're extracts (which is a different story), the dosage is just going to be far too low to make a difference.

 

[Sushi]

One follow up question: is there any way of trying to figure out which pathogen you've got? It seems to be total guesswork as to whether it could be Lyme, babesa, bartonella, an echovirus, EBV, etc?

The tests for these have accuracy problems. My doctor tests for these conditions with multiple types of tests to try to get the best picture. If you get a positive by PCR (which I did), that is a pretty conclusive test, but a negative PCR can mean that they just didn't "catch it" in the blood. This is a big problem when testing for intracellular infections.

Best,
Sushi

 

[dan062]

Thanks @Sushi. I'm beginning to wonder if there's anything in medicine that isn't based on complete guesswork. Not the cool stuff happening on the research side - which is mindblowing (some of it). But the actual process of testing and diagnostics available in clinics at the moment seems so remarkably hit and miss (particularly in infectious diseases) that it's hard to believe that after all this time we still can't test someone's blood and identify conclusively what infection(s) are causing them problems.

 

[Sushi]

I'm beginning to wonder if there's anything in medicine that isn't based on complete guesswork.

Have you had PCR testing, which, if positive, can be sent for sequencing?

Sushi

 

[dan062]

@Sushi: I haven't had any infectious testing done yet as, from what I understood, there was nothing in my blood-work to suggest it, but I will pursue that.

However knowing the health system here fairly well at this stage I would hold out absolutely no hope that anything bar the bare minimum level of testing (for any condition) will be offered/available.

 

[Sushi]

However knowing the health system here fairly well at this stage I would hold out absolutely no hope that anything bar the bare minimum level of testing (for any condition) will be offered/available.

Sorry, I missed your location--UK? Have you considered traveling to see a doc who could offer more testing?

Sushi

 

[dan062]

Correct.

At the moment, I basically don't have the money. And if I did, I'm not sure that infectious testing would be at the top of my list.

 

[JAM]

@JAM I also get the feeling that with lots of supplements generally the dosage must be minimal compared to what you'd get from eating the product in its natural state.

How much mushroom can you really fit into two gelatin capsules? Even with them being dried I can't imagine that much.

I suspect that for a lot of things taken as supplements, unless they're extracts (which is a different story), the dosage is just going to be far too low to make a difference.

Agreed, I was taking an extract/tincture.

 

[ukxmrv]

I don't tend to get a "die off", "herx" or IRIS effect from drugs that make me feel better in the long run (that are supposedly killing off things).

I do get severe reactions to some drugs and supplements but these tend to be the ones that leave me feeling worse afterwards and take up to a year to recover from. This can vary over time. As an example I once stopped reacting badly to an antibiotic but it still cleared up a sinus infection.

Also in the UK but been able to have some testing done by seeing private doctors over decades. Not a while now.