How do I stop spending so much on supplements?

[cb2]

thank you @whodothunkit i like your suggestions and gald you understand the "addictive pull" i did slow myself down by waiting 24 hours before i purchase anything on amazon and other places.

 

[whodathunkit]

Also forgot to say that if you've been taking something for over a year and you're not sure if it's doing you any good, esp. if you're not sure it ever did you any good, then stop it.

Ack...those are your *new additions*? You really have it bad, son.

Looks like you have a lot of things that can "duplicate" each other in that list. For example, glutamine and NAC are glutathione precursors. You might could drop the glutathione and stick to those cheaper supps.

I think pregnonlone is a DHEA precursor, so you don't need both of those.

PQQ is questionably effective and probably over-hyped. It's also expensive. I'd definitely drop that one.

A little research might help you with some points like that.

 

[satori]

Get your levels tested using something like Genova's Nutraeval so you know what you need. You can also find resources online to determine the nutritional content of your food. Stick to places like Iherb and Swansons to get the best prices on most things. Doing those things allowed me to eliminate or greatly reduce the dose of many things and still avoid deficiencies. Didn't cure me, but at least I know I have one base covered efficiently.

 

[barbc56]

I would spend the money on a healthy diet. If you still feel you need something, maybe a multivitamin.

You don't need to eat as much as is often thought to get the needed nutrients. Also taking a supplement is not absorbed the same way.

I'll post some sources later. I am also going to see a dietician in a few weeks as I have IBS. Right now I'm getting the full treatment on health matters. That might also be helpful. I would avoid nutritionist as they don't have the same training.

Good luck.

Barb

 

[whodathunkit]

would spend the money on a healthy diet. If you still feel you need something, maybe a multivitamin.

You don't need to eat as much as is often thought to get the needed nutrients. Also taking a supplement is not absorbed the same way.

I'll post some sources later. I am also going to see a dietician in a few weeks as I have IBS. Right now I'm getting the full treatment on health matters. That might also be helpful. I would avoid nutritionist as they don't have the same training.

Good luck.

Gods, yes. This is the foundation of it all. Please, please consider that! I've been having really good results from the Perfect Health Diet, but everyone's different.

 

[cb2]

i have a hard time with research and concentration.. : ( one dr is ready to give me a try of adderall.maybe that will help with research! ha. the lyme dr recommended the gluatthione.. ..on that list there are about 4 new trials..and i think I will cut the PQQ it was a 60day trial and cant see any benefit. also i think i may send back the niagien and get my money back ..it has a 30 day guarantee..and since it is basically just B3 right? i am getting a ton of b vits. i saw a nutritionist for free through the cmpc healht and healing center..she put me on a basically paleo plan with lots of nutz and veggies..like 10- cups a day .. i got bad gi issues ..

i hear what you are saying about good food. was doing well with food...but slipped up really bad a week ago .. i started feeling deprieved. time to get back on the good food again plan. do you mean "organic" and grass fed? when you say good food? i was doing ok with a paleo sort of food plan.

i get sick of taking things- although i think the cordyceps were helping at first. also glutamine is cheaper than NAC so i will just stick with that one.. thank you!

 

[cb2]

also my dhea level were very low.. i know that can be tested with blood and the preg was low too but i have heard there it is hard to get a good reading on pregnanlone from a blood test.

 

[CFS_for_19_years]

The least expensive sources I've found for supplements are Swanson Vitamins (swansonvitamin.com)and Puritan's Pride (puritan.com). Sign up on their websites to get sales notifications, which run nearly constantly. When you run out of a supplement, do some comparison pricing with these two sources. Just buy their house brand.

If you're looking for a particular brand of supplement, I've found luckyvitamin.com to have the best prices.

My daily vitamin is Life Extension Two Per Day and I just take one capsule per day because it's potent enough:
http://www.amazon.com/Life-Extension-Two-Per-Day-Tablets-Count/dp/B006299OYG

Figure out what you can't do without and stick to that list. My "can't do without" list includes:

Multivitamin
Fish oil
Flax oil
Calcium
Magnesium
Vitamin D
NAC
PQQ

 

[greeneagledown]

Outside of a standard daily multi-vitamin (e.g., Centrum), I think there are two other supplements that an ME patient would be justified in taking: 1) Vitamin D, because so many of us don't spend a ton of time in the sun due to our condition, plus lots of multivitamins don't have enough Vitamin D, and 2) Vitamin B12, because B12 deficiency is fairly common in the general population, B12 is pretty safe to take (there currently is no tolerable upper intake level), and again, multivitamins typically don't have enough (our bodies are awful at metabolizing B12 from supplements). Luckily, that stuff is pretty cheap.

Other than that, I'm with a lot of the other posters here -- don't waste your money. There has never been a successful large-scale, placebo-controlled trial for a supplement in ME.

Not only will you save money coming off that stuff, but you'll just be saner. I had a supplements phase and I wasted soooo much time researching (and stressing out over) different supplements and brands. It can definitely consume you.

 

[geraldt52]

here is my list of things..some are new additions that are trials.

I deleted your list from the "quote" to save space!!!

Honestly, cb2, I don't think there's a human on the planet that needs all that stuff, or whose gut could process all of it. Have you considered a "supplement holiday" for a month or two? Taper down for maybe a week, and then just stop everything? You can always restart if you become convinced something was helping...

 

[barbc56]

It's much easier said than done when trying for a nutritious diet. I always have a back supply of food that's easy to make but sometimes that even seems too much. So many Catch Twenty-Twos for us!

Barb

 

[drob31]

I think a multivitamin, unless very low dose could be a bad idea. Because you could reactive to anything in it and not know what was causing it.

 

[heapsreal]

I wonder if some supps prevent damage l9ng term which is hard to tell. We know theres alot of oxidation and inflammation in cfsme so i think antioxidant supplements may be of help and probably no feelable immediate effects.
i use vit c/e/d, nac.lipoic acid.q10.carnitine.

recently been off pregnenolone for a few months due to funds and feel the difference although still on dhea. Pregnenolone for me has little effect on dhea and mostly cortisol.

Hormones within normal range just makes sense to help your body function effectively. They help control inflammation as well as growth and repair. If your hormones are already normal than theres less to gain.

 

[Jonathan Edwards]

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. The naturopaths and 'Lyme doctors' never do any proper trials, but just go on taking money without knowing whether their treatments are any use. It is a complete scam. I agree it is like an addiction to gambling or something. With this sort of money the charities could be setting up new research centres and getting somewhere. That is how it was done for other diseases.

 

[Kati]

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

I really wish the provincial program did not hire a naturopath and instead provided patients with proper and adequate testing and sound medical treatment. Moreover patients should not have to put up with a multi-disciplinary team which teaches them 'how to cope' when they have had to cope on their own for years if not decades. This my friends, is not medical care. It's just a covert way to do cognitive behavioral therapy and call it medical treatment when there is absolutely no medical treatment.

Thank you @Jonathan Edwards you just made my day.

 

[heapsreal]

Most drs say vitamins make expensive urine but then say eat 6 servings of fruit and vegetables a day to get your vitamins and minerals which many people dont . So getting it from food makes our poo expensive .

If this illness was taken seriously many years ago and not waved away by drs then most wouldn't be looking for treatments through vitamins etc.

Its very common for mainstream drs to prescribe vitamin D and calcium. Vit c to help anemics to absorb iron more efficiently . Fish oil to improve lipid profiles. Nac is used to protect the liver if one has overdosed on paracetamol and could probably prevent liver damage from most meds. Vitamin b1 is given to alcoholics to prevent liver damage. Thats what i have commonly seen prescribed by mainstream drs in australia .

there's many more uses for vitamins etc if one searches through pub med .

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

 

[Kati]

Most drs say vitamins make expensive urine but then say eat 6 servings of fruit and vegetables a day to get your vitamins and minerals which many people dont . So getting it from food makes our poo expensive .

If this illness was taken seriously many years ago and not waved away by drs then most wouldn't be looking for treatments through vitamins etc.

Its very common for mainstream drs to prescribe vitamin D and calcium. Vit c to help anemics to absorb iron more efficiently . Fish oil to improve lipid profiles. Nac is used to protect the liver if one has overdosed on paracetamol and could probably prevent liver damage from most meds. Vitamin b1 is given to alcoholics to prevent liver damage. Thats what i have commonly seen prescribed by mainstream drs in australia .

there's many more uses for vitamins etc if one searches through pub med .

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

We might all agree that dr Dan Peterson is one of the most reputable doctors treating patients with ME. I often wonder if he prescribes a whole lot of vitamins for his patients. I'd suspect B-12 perhaps, D and perhaps calcium/magnesium. That would be it, but then I am not his patient.

No physicians talk about glutathione. What's the deal with colustrum? Why should patient worry about heavy metal poisoning, unless you have a toddler who just swallowed a penny? What's woth colloidal silver and what's with coffee enemas? Nothing is scientifically proven. Just theories that is shared by patients here and rumors that it may help them 'detoxing'.

Does methylation work? (Good grief, this is a loaded question)yet there are gurus here who are advising patients on whether they are over or under-methylated and what they should do next so they don't get methyl-trapped.

Patients have paid into 23 and ME and trust that the information is accurate and according to certain profile, and certain gurus, you should do this and not do that, yaddi-yadda. Theories. Believers. A guru. And Money. Because you need to buy the right B-12 and folate, then you will need other supplements and don't forget the potassium because if you have chest pains you need potassium. Is 23 and ME truly accurate? Should patients alter their treatments based on what 23 and ME provides?

There is crazy stuff going on in this forum.

I am not surprised that someone is paying half of his rent worth in supplements alome, to keep up with what they 'should' do, according to the diet and protocol they're on, probably handpicked by what's shared here.

Placebo effect anyone?

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.

Just food for thoughts.

I know too many who cannot afford to spend thousands in supplement. It is sad to see happening.

 

[heapsreal]

@Kati
I dont know what the number is but if one is taking more than x number of supplements or spending more money on supps than rent, yep theres a problem.

they probably need to do research on many supplements and use a % of the profits for this.

Many people are gullible i suppose especially when first ill, can go overboard with supps. Something i have done. I try to research different nutrients and not from sites selling stuff, otherwise its trial and error as well as keeping in mind if i have extra money to try something . We need to pay our bills first and have priorities financially.

Im with you on the methylation stuff as i never got any response from this but it seems others do.

People need to know when to give up on a treatment be it meds or vitamins . Sometimes we dont know until we stop and start things a few times .

I think its a mistake to say all supplements are pointless.

 

[Scarecrow]

Placebo effect anyone?

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.

Just food for thoughts.

I know too many who cannot afford to spend thousands in supplement. It is sad to see happening.

There's a world of difference between modifying a symptom and recovering from a disease.

I'd estimate that in the past four years I've tried upwards of 30 supplements, in addition to one prescription pharmaceutical / smart drug (not prescribed by my GP but disclosed to them) and one probiotic.

The vast majority of supplements have had no discernible effect, so I didn't continue with them. That leaves three. I couldn't justify the cost of one of them for the marginal, but still noticeable, improvement it gave. So that leaves me with two effective supplements plus the drug plus the probiotic, which I haven't got round to verifying yet (more of that later).

I'm not persuaded that the placebo effect, in it's mind over matter guise, results in huge subjective improvements. I think it's far more likely that people take supplements because they feel like they are doing something positive for their health.

In the absence of reliable evidential trials, here's what I do to self-test what I take.

If I don't notice any improvements I usually stop taking the supplement well before I've reached the end of the bottle. This doesn't require any conscious decision.

If something appears to be helping I don't discount the possibility that it could just be part of a natural wax and wane cycle. So I stop taking it and see what happens. If the symptom returns or gets worse again, I restart the supplement. If the symptom gets better or disappears, there's a very good chance the supplement is responsible.

It's a very simple process. Obviously, it's a bit difficult to carry out a blinded trial on yourself but it might be possible with a capsule machine and a willing assistant to do the blinding. So much the better.

Most supplements are a waste of money, so if you find yourself with a cabinet full, you owe it to yourself to identify which ones are dead weight and get rid of them. There are far better things to spend your money on, including research.

 

[A.B.]

I agree with Jonathan Edwards that we should spend more on supporting research and less on supplements.

I do think that the strategy of using supplements to modify some symptoms can be worthwhile. I do think that the majority of the time it's executed poorly. Throwing random supplements at the disease, believing everything one reads about a supplements, or not properly testing whether a particular supplement is even helpful for oneself, or not understanding the problem domain, are all problems.

Most people, including myself, just don't have the patience, knowledge, concentration or energy to get it right.

Not only is this a waste of time and resources, it also damages the image of the patient community.

If you're spending half your rent on supplements and don't even know if any of them are helpful you're clearly doing something wrong.

There is a problem in this area and I don't quite know what we can do about it. Perhaps we need to be more humble and accept that there is little we can do to improve our health in the near future.