How do I stop spending so much on supplements?

[GracieJ]

Another view here.

I would be down in bed and not functioning if it weren't for supplements. As I do not and have not had good support for most of the years I have had this, I really do not know where I would be if I had not researched this well and added one thing at a time over the years.

It is not a cure, but because of what I take, I am back on my feet enough to work and have a reasonable quality of life. I am sorry to see so many on here knocking it.

There was a time when I had access to a doctor who understood this illness. My prescription list had nine items and we were looking at a few more. I was beginning to feel quite ill from side effects, even with low appropriate doses. Then the time came where I could no longer afford this and had to wean off everything and start over other ways. What I spend to see a doctor once covers my supplements for one month.

Placebo effect? No. Not after 25 years of learning what to do.

The only time I had trouble was when I tried to live without supplements. Over several months, things deteriorated until I had to stop working, and that is when I ended up homeless, among other not-so-fun events like being sued over non-payment on a piano. Not pretty.

It took two years to rebuild my system and get back to work. I will keep it, thank you very much.

Would love to match my supplement budget with a donation to research, but guess what? I am busy rebuilding my life and not falling through the cracks. My next goal this year is to finally start building an IRA. I am 53. I am not waiting on research for answers. I really, really, REALLY like having a roof over my head!

How to not spend so much? Focus on what supports the endocrine system. Use muscle testing to determine your top ten must-have items. Rotate supplements appropriately, taking rest periods for one-two weeks where possible. Know what each one does and exactly why you are using it. No guesswork.

 

[GracieJ]

@cb2 That is actually a pretty good list, imo. About halfway there for total effect. Do you have someone helping you with this?

Two other thoughts:

Avoid synthetic vitamins. They are cheap additions to multi blends and do nothing. I can tell when cyanocobalamin is the B12 in a product from how I feel using it. Fake vitamin E is another I watch out for and avoid.

Any food or medicine or supplement is going to do its job better in a clean system. Drinking enough water is the best way to maintain that.

 

[whodathunkit]

Well, here's my new $0.02 after sleeping on it:

@cb2, IMO you should strongly consider trying a good, solid, healthy diet like Perfect Health Diet, and stopping most if not all of the supps for a while. I have been a food addict my entire life and this regimen is the only one where I haven't wound up feeling so deprived after six months that I wanted to eat my own fingers. Seriously. So I know whereof you speak.

It's not really a diet, either...more a lifestyle change. And a very, very beneficial one. I wish I'd known about it 20 years ago. I think the past two decades of my life would have been very different.

I also wish I'd given PHD a good try before or immediately after I landed here at PR and started Freddd's methylation protocol. I think my results would probably have been smoother and maybe faster. Maybe I wouldn't have needed such big honking doses of some of the things that really helped me, but that I spent a lot of $$$ on. I'd been hearing about it for a year or two but just blew it off because every other regimen I've ever tried ultimately was a let down. I didn't want to get sucked into hype again.

But PHD has actually taught me how to eat like a normal person. Portion control and beneficial food choices are coming more and more naturally every day. Portion control because I get satisfied much more easily and beneficial food choices because I'm actually losing my taste for crap food. It's too sweet, too mushy, tastes a little bit like plastic, whatever. I just don't want it. I'm also losing some of my taste for healthy stuff I love too much, like fat. I actually *don't want* to put a half a stick of butter on my potatoes any more. I actually like them and find them satisfying with just a little bit of butter, or even with only salt. And even my salt consumption is naturally coming down (has been high for years because managing adrenal dysfunction).

Anyway...there are enough macronutrients (even starchy carbs) and micronutrients in PHD so that everything is in pretty good balance as long as you eat the way.

I recommend to try it for a few months and see how you do. Stop taking most if not all supps. Use the time off from supps to research and get a handle on what really might help you. Then add things back in gradually according to your symptoms or treatment goals.

Another thing to understand is that you don't always need things in perpetuity. Just because it did you good for a while doesn't mean you'll always need it, or need it at that dose. Many times if you correct an acute deficiency or symptom you can lay off, as long as you don't continue the behavior that netted you the deficiency or symptom in the first place.

I would be down in bed and not functioning if it weren't for supplements.

Supplements have improved my health dramatically, too. But it's worth noting that I don't get nearly as much benefit from them when I'm eating a crappy diet, or even a "healthy" diet that isn't right for me (like Ray Peat's stuff, although I have gotten a lot from him). And I think I'm finally reaching a point where I can cut out a lot of things, although some stuff I'm definitely wedded to (like CoQ10, mB12, periodic probiotics and resistant starches, etc.). But even the stuff I'm wedded to I'm able to cut back my dosages to a great degree.

Unable to patent natural treatments holds back any research into these therapies as research into meds is where the money is.

Yep. And last time I checked, it was NOT individual medical doctors who created and funded their own trials. When was the last time you solely funded a large trial of something you were curious about, @Jonathan Edwards?

Instead, it's pharmaceutical companies or universities who do the studies. Entities with big, deep pockets, and lots and lots of lawyers and insurance.

 

[whodathunkit]

Who has gone so much better and actually left the forum because their life was so productive they no longer had time to spend here?

If they go away and leave the forum, and we never hear from them again, how on earth would we know how much better they are? Of course we hear crickets when people ask questions like that, because they're unanswerable.

Seriously, in those cases where people disappear we're left to figure for ourselves what happened to the long-goners. Some of will believe they left because they got better, some will believe they left because they got worse.

I have improved astonishingly due to the supplements I've tried since I hit PR. I consider myself almost well. Some may argue that I didn't have CFS because I didn't have a diagnosis, but definitely one reason I didn't have a diagnosis is because I didn't pursue it. I just thought I had to put up with the decline. I didn't realize my conglomeration of symptoms added up to anything, and I didn't even realize that some of my symptoms actually were things. I thought they were just my unfortunate lot. Plus, I was too busy just trying to muster enough energy to work a full-time job. I didn't have energy to drag myself around to a bunch of different doctors in my free time. But after what I've learned here on PR I realize I did fit the criteria for a number of years.

Anyway, I stick around PR because health is an ongoing quest. The battle to stay healthy will never be over. Plus I like the people and the community here, and I want to maybe help others in some small ways, if I can.

Then there's the fact that maybe we don't always hear about how well people are doing. Going on and on all the time about your fabulous recovery is really bad manners when so many are not doing so well, and strongly pushing the supps that helped you on other people is also poor taste plus inadvisable because everyone reacts so differently to things.

Plus it's not a way to win friends here. It puts some people off if you say you're getting so much better, because they believe CFS is incurable.

But maybe not everyone who gets better leaves.

 

[Martial]

You just got to stick with absolute bare bone essentials. Whatever works best for you, tailoring treatment very specifically for what helps you. For supplements that could mean less then a handful of things, if you think you have lyme those herbs will also not compile a large list. You shouldn't be spending more then 140$ a month, if including some kind of herbal lyme treatment. Much less without that and 140$ a month is an absolute upper limit. I spend about 115$ a month on everything I take all together.

 

[cb2]

for sure alot to think about. i have to stop trying new things! i am tired of being desperate and have gotten much worse the past couple years. I do like the idea of stopping things or cutting back to very basics. will take a look at the PHD Food plan.
@Martial what type of lyme tx are you on and is it helping? thanks

 

[cb2]

phd food plan seems kinda like paleo food plan

 

[whodathunkit]

phd food plan seems kinda like paleo food plan

Paleo with starch. Which, they're starting to figure out a majority starch was probably how Paleolithic people ate, anyway. I always wondered why otherwise smart individuals conceived the idea that Paleolithic people were too stupid to dig up tubers. Nobody who survives is that dumb. And leafy greens were probably scarce for 6-7 months out of the year. Etc.

Anyhooo...it's not low carb at all. It avoids the pitfalls of the low carb paleo approach, and also the typical pitfalls with low cal. You can eat enough starch and fat to keep you happy, and get enough calories to maintain your weight (or lose, if you want, like I am), you just do it eating the right kinds of starch and the right kinds of fat. While I was transitioning into this I ate quite a lot of bacon, for example, and occasionally stuff like hashbrowns fried in coconut oil or lard. That's why PHD is so satisfying and you don't go hungry: if you get a jones, there's a way to indulge it that's not as bad as throwing the baby out with the bathwater and going to McDonald's or Taco Hell (or eating whatever your favorite crap is).

I'm about over bacon now, BTW. Bacon has always been a pig-out trigger and a jones for me, but now I can eat a sane three pieces of it with breakfast and be happy. I don't feel compelled to eat the whole package. I NEVER thought that would happen.

The other thing about PHD is that if you do it right, it will help straighten out your gut flora, which will reduce your cravings even more. I actually did this backwards...I worked on my gut with a bunch of supplements and a variety of starches, and got rid of a lot of my cravings that way, before starting PHD. But I don't recommend that bass-ackwards, expensive approach for you at all. I wish I'd done it otherwise but since I ultimately arrived where I wanted to be anyway, I'm okay with it.

 

[Aurator]

The only consistent advantage I've found from doing the rounds of the supplements (I'm now supplement-free to clear the way for my first Rituximab infusion in 2025) is that it gives you the perfect put-down when yet another clever-clogs who thinks he knows the solution to your illness pops up and says "But have you tried X?" Telling these people you've tried literally everything out there is sometimes the only way of silencing them.

 

[redaxe]

I've also concluded that most supplements are pretty much a waste of money longterm. Some can have nice short term effects which can improve certain symptoms but that's about it.
I went the full way early on with all the energy supplements 'prescribed' by alternative 'quack' doctors. It was costing me thousands of dollars a month for vitamin C IVs, magnesium powders, ribose, coq10, transfer factors, nt factors......
Very little to show for it - but I did find 3 things helpful
-Vitamin B12 injections (these are pretty cheap so I'd recommend several of them if you haven't had any just to see if you get any improvement). However after you have a few you're probably unlikely to see further benefit. Vitamin B12 does help with myelin function (i.e. neurological health) so its not a bad idea to make sure your B12 levels are on the higher side of normal (this should be probably be done for all neurological or psychological disorders)...

-Probiotics (for gut issues and sinuses). Early on I had a lot of IBS and bad sinuses -likely from Staph aureus overgrowth in the nose and sinus cavities. I've found taking probiotics (both ingesting and snorting up my nose) has helped those issues.
-N Acetyl Cysteine for anxiety, depression and OCD (nothing directly related to CFS/ME but it does make my brain chemistry a bit more stable so that is definitely worthwhile). I think NAC is also good to take if you're doing longterm antibiotics or antivirals for its liver protective effects.

 

[cb2]

my brain is in a big fog lately. will try to digest as much as i can .. the last couple days everything seems realy really difficult.

 

[redaxe]

my brain is in a big fog lately. will try to digest as much as i can .. the last couple days everything seems realy really difficult.

Can I ask what are your symptoms besides the brainfog?

 

[cb2]

my worst is the exhaustion.. i usually can push through to do some exercise but this past week has been pretty bad and i have had a terrible time with my food.. as a result- the exhuastion keeps me isolated.. sometimes i am wondeing how much of this is "hangover" from the sleep meds..

 

[dannybex]

Who has gone so much better and actually left the forum because their life was so productive they no longer had time to spend here? Crickets.

Well, not exactly.

I know that 'Greenshots' and her family have recovered completely, also I believe Catseye left a few years ago because she was doing so well, and there was no need to come back. Same with 'StormySkye. Then there are many others who are improving or have improved considerably, like @ahmo, @SOC, @Asklipia -- just a few that come to mind.

And of course @whodathunkit as posted above.

Not a member of this forum, but someone I've known personally (since 2005), is Ken Lassesen, who ran the old yahoo group CFSExperimental. Along with carefully selected antibiotics, he used many herbs and supplements. He doesn't call himself cured, but instead chooses to use the term 'remission'. He first got sick around 1970, recovered and was well until he relapsed in 1999, then recovered again (back to full time work & a family) until a relapse in mid-2012, which lasted about 6-8 months. This last time he focused more on fixing and changing the microbiome with carefully selected probiotic strains (including Mutaflor) and soil-based organisms. He's been back at work for the last 2 years, working amongst folks half his age (he's in his sixties) at a demanding job, and is full of energy.

He has a blog, he's on Facebook -- anyone can contact him and find out for themselves.

And then I've know about a half-dozen folks from my local support group who recovered, that I've mentioned several times before. A couple of them used antibiotics or antifungals at times, but they also needed nutritional support and did things like 'aggressive resting' and other lifestyle changes. I don't think any of them have even heard of Phoenix Rising…they were too busy getting well instead of spending their precious energy arguing about therapies or the politics involved.

Having said that, I agree that too much money can be spent on herbs or supplements, and just because they work for someone doesn't mean they'll work for someone else nor have any negative effects.

I also agree that there are some practitioners that prey on desperate patients, insisting that they 'need' this and this and that (Dr. Klinghardt comes to mind as one of the worst examples), but at the same time, to paint all naturopaths or integrative docs with broad, patronizing brush like some on this forum have as being quacks or in some way inferior, is unfounded and unfair.

 

[redaxe]

I also agree that there are some practitioners that prey on desperate patients, insisting that they 'need' this and this and that (Dr. Klinghardt comes to mind as one of the worst examples), but at the same time, to paint all naturopaths or integrative docs with broad, patronizing brush like some on this forum have as being quacks or in some way inferior, is unfounded and unfair.

I think Jacob Teitelbaum is the worst. It's not just about the supplements but also how he redefines the illness to blur any distinction between CFS/ME and someone with a general fatigue. Selling books that miscontrues the true nature of our illness and markets it as something that can be cured with a gold old dose of SHINE (includes buying lots of his supplements).

The main problem I have with naturopaths and integrative doctors is they just operate under this assumption that the human body if given the right nutrition/supplements will cure itself of any disease. And if they don't state that then they will still treat their patients exactly the same way, ignoring that disease is incredibly more complex then their simple philosophies can account for. So if someone has hemochromotosis well lets just give them CoQ10 and iron to relieve their fatigue and give them a diagnosis of 'adrenal burnout' and prescribe some herbs. Oh wait that didn't work then they must have chronic Candida.... Nope, oh how about gluten intolerance...

If someone has persistent daytime tiredness from narcolepsy (in which case they've lost the neurons that are able to produce orexin) well lets give them a diagnosis of candida overgrowth and tell them to abstain from sugar, caffeine and give them adrenal herbs....

Case 3 a patient goes to a integrative doctor with undiagnosed chronic fatigue. The doctor orders them a test for Borrellia as part of the checkup and the test comes back with borderline cellular response.
Despite the possibility of a 'false positive' the doctor will make the patient spend $1000s on IV vitamin C therapy, various herbs and antibiotics and from what I've read now the buzz is Infrared Sauna's which you have to use multiple times a week.
6 months later the patient is no better
The doctor - "well you didn't follow my protocol closely enough. I think you are very stressed you need to see a psychiatrist".......

I may be exageratting a bit but that is more or less how these guys operate from my experience and from what I've read from others here and elsewhere on the net.

 

[dannybex]

Believe me, Teitlebaum is a saint compared to Klinghardt. Here's just a sample of the HUNDREDS of "treatment" possibilities he suggests. One can find more by googling "Klinghardt Academy":

http://betterhealthguy.com/joomla/?...=article&id=133&Itemid=124&fontstyle=f-larger

Some choice tidbits:

"Reset the immune system and the mucous membranes by using a urine nasal spray""

"Treating Lyme, balancing the bite, and ballroom dancing can be very helpful. Ballroom dancing puts the autonomic nervous system in its most healing state."

"Next, circulation is opened using bee venom ointment…"

"The immune system is like a biting dog. Auto-urine therapy may be used. No homeopathic can ever come close to what your own urine can do for you."

"Can use rectal application of 1 capsule of BioPure Freeze-dried garlic, 100mg artemisinin, 1 teaspoon phospholipids with pure water in a bulb syringe from the local drugstore. Make the mix liposomal using the ultrasonic method used with the Klinghardt Cocktail."

…and on and on and on...

 

[ahmo]

I had terrible results with Teitelbaum's recommendations. Nothing worked for me until I went gluten/dairy-free. Then supps for pyroluria, Freddd's Protocol, Klinghardt's detox suggestions dramatically changed my life. I've had few supps that haven't worked for me in the 3.5 years that I've been gluten-free. Using pr as my basic source of info has led to a lot of success. And there are many supps I no longer need. They were necessary and useful for some time, and now things have improved, and I've found small elements that make big differences, like FMN form of B2, which I wrote about on blog. My supp orders are now very modest. whew.

 

[Valentijn]

I agree with leokitten and kati. If all the money wasted on supplements went to proper trials we could have done convincing $3M trials on all the treatments mentioned on PR in the last two years.

Perhaps. But if I'd had to endure a chronic headache for 5 years thus far (resolves with fish oil), very poor sleep and "wired" brain (resolves with NAC), and constant muscle twitches, spasms and cramps (resolves with magnesium), I'd likely be too dead from suicide to be donating anything to research anyhow. I also very much enjoy the ability to sit up all day which has been the result of yet another supplement (yohimbe).

The naturopaths and 'Lyme doctors' never do any proper trials, but just go on taking money without knowing whether their treatments are any use.

And how many MDs are bothering to personally research the treatments they use? Just like those MDs, the NDs and LLMDs typically rely on the research of others, which is a pretty reasonable approach. I'm also not sure why you seem to think NDs and LLMDs are inherently untrustworthy. LLMDs (Lyme-Literat Medical Doctors) are just MDs who have chosen to focus on a certain infection. NDs (Naturopathic Doctors) are trained, licensed, and regulated just like MDs in civilized parts of the world, with very little difference in their coursework or the limitations placed upon them.

The ND and Lyme-treating MD I've known very much rely upon published research, and they have both been very helpful to me. Both have helped with my symptoms quite a bit, first by testing for the problems which they were familiar with, then by trying treatments based on the results. In the case of my ND, this led to me discovering that NAC was quite helpful. And even though that ND knew little or nothing about ME or Orthostatic Intolerance (OI), he listened to me when I proposed trying a drug indicated by my test results which could also act in a way that might help with OI. The he looked into it, agreed it would be a very safe thing to try, and took the precaution of monitoring my blood pressure prior to and after starting the drug.

When I presented that same drug and the relevant lab result to a Dutch mainstream doctor (neurologist) and told him that it had been helping with my blood pressure problems and symptoms, he was disgusted and told me that only exercise could help me. I'll take an open-minded ND who is willing to rationally and carefully try to treat my symptoms any day of the week, over a mainstream MD who dismisses my symptoms and refuses to attempt to treat them, or even believe that they exist, despite a lot of documentation and my experiences. And unfortunately, that sort of dismissal is the default norm for the mainstream medical profession in many areas.

Neither of my doctors have pressured me to buy supplements. The ND had me try a mix which was a brand that their office sold (produced by a third party), but wasn't bothered at all when I asked for his help in finding the various ingredients myself. And the MD treating me for Lyme and Bartonella has had me try a few supplements which have anecdotally helped some of his patients, but again was completely unbothered when I had side-effects and quickly stopped using them. And both have been extremely interested in whether or not the treatments are working for me - much more so than most doctors in the national health system.

I'm willing to accept that there is little evidence that some of these treatments work for my problems. And I'm willing to try them carefully. Surely it's better to do that with an ND or LLMD than to attempt it entirely on my own.

I also don't keep taking things that don't work - and I think that is where some people, like the original poster, are going wrong. Some self-appointed internet gurus describe complicated protocols guaranteed to cure whatever, but only if they stick with it for years, or do it exactly right but it takes months to figure out that they're doing it wrong, etc. Not every supplement or drug is going to help - in fact most won't. And if it's not helping, stop buying it.

But some things do help me very much, and it's horribly offensive every time someone here tells me and everyone else to stop buying those things, and donate the money to research instead. I'm not going to feel guilty for refusing to suffer more than I do, yet guilt seems to be the exact goal of using the argument to donate the money instead of being a greedy bastard and spending it on my own well-being. It's abusive and inappropriate.

 

[Sasha]

There was a patient (I forget his name) who had a 'best of all worlds' suggestion about this issue, which was that patients who could afford to do so should donate 1% of what they spent on supplements to research.

In other words, you invest 99% of your 'ME money' in your immediate health needs and 1% in yours and everybody's future.

It doesn't sound like much but our numbers are so huge that if we all did that, we'd have shedloads of money.

 

[SOC]

There was a patient (I forget his name) who had a 'best of all worlds' suggestion about this issue, which was that patients who could afford to do so should donate 1% of what they spent on supplements to research.

In other words, you invest 99% of your 'ME money' in your immediate health needs and 1% in yours and everybody's future.

It doesn't sound like much but our numbers are so huge that if we all did that, we'd have shedloads of money.

I can't speak for everyone here, but I think a lot of us donate 1% or more of what we spend on supplements to research. I don't see that it's generated massive amounts of money.

I suspect there is an exaggerated perception of how much money we are spending on supplements. For example, suppose a patient donates a mere $100 to research every year. That's 1% of $10,000. I think many of us are donating more than $100 per year and spending less than $10,000 per year ($833 per month) on supplements. If a patient spends $200 per month on supplements, that would only generate $24 per year for research. That won't get us very far.

Am I wrong?