Feeling helpless

[Martial]

Sorry I just saw that he does list a suggested starting point. I had missed that my first time through.

Hope you found everything you need, if you have any questions shoot me a PM.

 

[jess100]

Hope you found everything you need, if you have any questions shoot me a PM.

thanks Martial and I might do that. I still haven't started anything-

 

[winston]

Anyone, is there hope for late stage Lyme and MTHFR a1298c two copies?Had first appt with a ilads dr in CA a Dr Thoring trained by Dr Harris. I am so sick. He says he knows methylation. I don't have any fight left been doing protocols for CFS for years just found out I have Lyme which I think is worse. Been doing B oils from Australia for 4 months. I want to give up but I do not know how to do that.

 

[Mary]

@ahmo If you have parasites and do something to treat parasites I don't see that as detoxification any more than chemotherapy for cancer would be detoxification, if that classifies as detox then everything is detox. When people refer to detox they typically mean purging themselves of the harmful chemicals/biproducts of whatever primary treatment they are engaged in, which they believe are "building up" within the liver, as though the liver was a filter that needed flushing out from time to time. I hear it all the time from other patients/advocates and it is now seen as an integral part of treating chronic Lyme. This is what I am skeptical about and what the article I linked challenges, I would like to see some evidence that these questionable remedies such as coffee enemas actually help beyond placebo.

Actually, I think that's a really good analogy for the liver being a filter which needs to be kept clean. 13 years ago my digestion was extremely bad. Many days I couldn't even eat until after noon, I was tired, felt sick and fluish, doctors of course found nothing wrong. In short, I felt like s**t. Then I saw my chiropractor who does muscle testing and he told me my liver was overloaded with toxins. I'd had a job many years before where I had heavy exposure to acetone, a chemical solvent. It seems that was partly why my liver was so overloaded.

Also at this time one glass of wine would make me sick the entire next day and 2 glasses would make me sick for 3 days. It wasn't a hangover, I wasn't getting drunk, I felt poisoned.

So I did a liver detoxification with the help of my chiro. I took a couple of supplements from Standard Process, and it was rough, it made me feel worse but I stuck it out for a month and afterwards my digestion was very much improved and I could enjoy (and still do) wine in moderate amounts again. I also started taking milk thistle for liver support and learned I needed to take HCL as stomach acid was low.

No, we don't have the scientific studies you would like on this, just like there are so few scientific studies on all sorts of health issues, I think primarily because no one's going to get rich. All the clinical trials are for prescription drugs, where someone's going to make millions. No one is putting serious study into nutrition. If I had waited for clinical trials before doing the liver detox, I'd still be sick as a dog, or worse.

It'd be great if I could go to the regular MD and actually get some help, but I can't remember the last time that has happened, except for getting antibiotics for a UTI and parotid gland infection.

 

[Vitalic]

Actually, I think that's a really good analogy for the liver being a filter which needs to be kept clean. 13 years ago my digestion was extremely bad. Many days I couldn't even eat until after noon, I was tired, felt sick and fluish, doctors of course found nothing wrong. In short, I felt like s**t. Then I saw my chiropractor who does muscle testing and he told me my liver was overloaded with toxins. I'd had a job many years before where I had heavy exposure to acetone, a chemical solvent. It seems that was partly why my liver was so overloaded.

Also at this time one glass of wine would make me sick the entire next day and 2 glasses would make me sick for 3 days. It wasn't a hangover, I wasn't getting drunk, I felt poisoned.

So I did a liver detoxification with the help of my chiro. I took a couple of supplements from Standard Process, and it was rough, it made me feel worse but I stuck it out for a month and afterwards my digestion was very much improved and I could enjoy (and still do) wine in moderate amounts again. I also started taking milk thistle for liver support and learned I needed to take HCL as stomach acid was low.

No, we don't have the scientific studies you would like on this, just like there are so few scientific studies on all sorts of health issues, I think primarily because no one's going to get rich. All the clinical trials are for prescription drugs, where someone's going to make millions. No one is putting serious study into nutrition. If I had waited for clinical trials before doing the liver detox, I'd still be sick as a dog, or worse.

It'd be great if I could go to the regular MD and actually get some help, but I can't remember the last time that has happened, except for getting antibiotics for a UTI and parotid gland infection.

Well, no, it's a terrible analogy as the article I linked pointed out:

Advocates for detox typically describe the liver and kidney as acting like filters, where toxins are physically captured and retained. It’s argued that these organs need to be cleaned out periodically, like you’d rinse out a sponge, or change the air filter in your car. But the reality is that the kidney and liver don’t work this way. The liver performs a series of chemical reactions to convert toxic substances into ones that can be eliminated in bile or urine . The liver is self-cleansing — toxins don’t accumulate in it, and unless you have documented liver disease, it generally functions without any problem. The kidney excretes waste products into the urine — otherwise the substance stays in the blood. Anyone that suggests these organs need a “cleanse” is demonstrating their ignorance of human physiology, metabolism, and toxicology.

You provide an interesting anecdote but unfortunately preface it with an advertisement for the willingness to believe absolutely anything on no evidence at all (like bogus and discredited muscle testing that is explained entirely by the Ideomotor phenomenon), and so any thinking person is immediately inclined to doubt the explanatory value of your account.

The anecdotes of this kind that I am exposed to almost always share some commonalities, one such being that the person has usually tried a whole bunch of different things and so cannot really know what exactly it was that helped them and to what degree. Or the person will claim there aren't any studies for something because there is no financial motivation, when actually there are studies but they just show the thing is completely useless, but that contradictory evidence is conveniently overlooked or attributed to some overarching conspiracy to suppress alternative cures. I also note the customary denigration of western medicine, "they only ever helped me for those two infections that once upon a time when average life expectancy was 25 might have killed me".

I have begun to think that people who are able to make these leaps of faith have brains wired in such a way that makes themselves more conducive to the placebo effect, because if you believe something is going to help you we know that alone can have remarkable effects, hence the need for placebo controlled and double-blinded experiments. Unfortunately for those of us that are not able to believe irrational nonsense we have to look for something that is both plausible and backed up by a modicum of supporting evidence. Sometimes I wish I could just go to a chiropractor or some other individual posing as a doctor and get some dubious testing/treatment and believe it had a chance of helping, maybe credulousness was an evolutionary adaptation to aid our self-healing mechanisms, and the enlightenment principles of reason based rationality and skeptical inquiry have had a strange kind of unhelpful effect in that regard, at least in those minds that those values have managed to permeate.

But on the other hand, I cannot help but acknowledge there is still so much that we don't know and so who can really say that your taking milk thistle and whatever else it was didn't have a transformative effect, could it be that sometimes people just get lucky with the right combination of chemicals at the right time which allows their body to overcome a certain problem which has a cascading positive effect on their overall well-being.

When we have a condition for which there is no known, straightforward medical cure we by definition have to open ourselves up to the possibility that what may help us may not be well validated or considered fringe from a mainstream perspective, the problem in my view is some people take that ball and run with it, run with it way way too far, under the assumption that if medical science doesn't have the answer literally everything else should be on the table. I have seen it first hand within my own family, when people are not trained in thinking about these things in the right way and are then thrown into the world of medicine and science armed with a natural propensity for wishful thinking and confirmation bias the effects can be disastrous.

This situation that many of us are in comes with the unhappy inclusion of an almost inevitable and constant clash of world views, and those on the more skeptical end of the spectrum inevitably find themselves bombarded with ideas and suggestions that are deeply aggravating in their basic premise. For me, it is (aside from the obvious practical limitations it imposes) the worst aspect of this hopeless condition.

 

[Mary]

@Vitalic - I used to believe that doctors could help me. That's how I was raised, so whatever they said to do, I did. I was very fatigued so the doctor gave me Prozac. Despite my predilection to believe that he could and would help me (is this the placebo mindset you are referencing?), I reacted terribly to Prozac.

The first time I went to the chiropractor who does muscle testing, I had no belief that he could help me. But I had given regular MDs over 7 years to do their thing and no one was able to help me. So I was willing to see what, if anything, the chiro could, and it was only going to cost me $50 to find out. Well, much to my surprise, the chiro helped me on several occasions. The first was with my adrenals which no doctor had ever mentioned before. This was in the early to mid-1990s before we patients were so well-educated. The idea of adrenal exhaustion was new to me, but within a couple of days of taking the adrenal glandular, my energy started to improve noticeably. This was after the Prozac made me feel like crap.

I try to keep an open mind re medicine and health and treatments; it doesn't mean I'm credulous, I read a lot and also experiment a lot. I've been crashing for 18 years, my life has stopped, and mainstream medicine has done next to nothing for me so I'm working as hard as I can to heal myself. I'm afraid that your statement that my brain is wired to accept (?) the placebo effect strikes me as a bit condescending and offensive. I'd say lay off the personal interpretation of why we think differently and I won't speculate on your thought processes either.

Someone else was ridiculing an "alternative" treatment, raising the lack of clinical trials, etc. And it occurred to me that this is the exact mindset of doctors who tell us that ME/CFS is all in our heads - they don't have the clinical evidence they demand to believe that it's real, and our telling them about our subjective experience doesn't count for squat, much as you are doing with my experience with the liver cleanse. Contrary to popular medical belief and the article you referenced, toxins can and do accumulate in the liver, just as contrary to popular medical belief at one time, handwashing really does help prevent the spread of infection and saves lives. But the doctor who promulgated hand washing was ridiculed and scorned so doctors kept on delivering babies and killing mothers with their dirty hands for years after handwashing was introduced.

Anyways, I could go on and on, but I don't have the energy and there's no point. I'm not going to change your mind. But I do find it helpful to remember that bloodletting used to be the best that that mainstream medicine had to offer.

 

[chilove]

So sorry you are dealing with all this. Don't every lose faith. MANY people get better. I did. For inspiration there is a group on Facebook called "Lyme Success Stories". I highly suggest you join it and read the stories there of people who got better when you are discouraged.

The best thing you can do now to quickly feel better is reduce inflammation and detox. I honestly think that in terms of symptom relief these are the two most important things. Once you are a on a good program to do those.. then you start killing pathogens. Taking activated charcoal, calcium bentonite clay, doing daily castor liver packs and/or coffee enemas and a raw vegan diet helped me the most to reduce inflammation and detox.

Best to you. Hang in there. It does get better