How do I stop spending so much on supplements?

[Sasha]

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?

Maybe he said 10%! It was a few years ago. But if each of the 1 million Americans with ME gave $24, we'd have $24m. If we assume that only 20% are diagnosed and maybe only one in twenty are part of the ME community, we're talking 10,000 US PWME and that's $240,000.

We need to be more than a few thousand patients in the network, and that's why we've got to keep reaching out and making the most of every media (and social media) opportunity to grow our donor base - and I agree that the more we give, the more we raise.

But I think a lot of people don't give at all because they're discouraged and think a small donation won't make a difference. And that's a self-fulfilling prophecy.

 

[GracieJ]

I like the 1% idea. As I have found the organization I would support with my dollars, I will move forward with that. 10% is doable. Consider me on board.

Back to the topic of the thread:

@cb2

Years ago, I saw a doctor who prescribed a bunch of supplements for my use. It was a lot financially, emotionally, lifestyle changes, everything. I kept feeling guilty for leaving pieces off that he told me were vital parts.

Well, years later, looking at that protocol with more education, I could see that he was trying to address everything at once as well as give me a good nutritional base. It just was not realistic. I could have chosen three or four items to address the most pressing issue, then the next one several months down the road, then the next.

Ironically, what I kept leaving off was a multi-vitamin that would NOT have been good for me.

Another consideration is dosage. I have mentioned this a few times on the forums.

The instructions on the bottle and from the practitioner many times is a low, safe maintenance dose for a healthy person who may be clueless as to what they are taking. Our bodies are sick and depleted. A dose three-four times what is recommended with some items is both appropriate and safe for an ill body. So you could possibly be doubling up on 1-3 very needed items and eliminating ten others for a time and seeing results.

I agree with @Valentijn about the inappropriateness of advising other patients to abandon their supplements as useless and wasteful. Until we have more solid answers about what this is, they are running relief and enabling function for many. We suffer enough abuse without it coming from within our ranks.

 

[Daffodil]

iherb or swanson often has supplements at very cheap prices. if you see the lyme ND, i would tell them you cannot afford but 1 or 2 supplements and ask which are the most important...maybe liposomal glutathione, b12,.. something that helps with detox would be important. if i could return most of the supplements i have wasted SO much money on, i would....i didn't notice any of them helping.

if you end up on antibiotics, probiotics might be important too.

other than that, eat healthy and drink lots of water!

 

[taniaaust1]

Supplements wont help at all unless its something you actually need for some reason.

I only ever stay on supplements which I know are doing something good for me so I know I must need them eg I think less clearer without my molybdenum supplements, I have more stamina etc with taking my two MTHFR mutation supplements, without selenium my nails start peeling and go weak etc

I will trial any new supplement for only a only a few months and if I don't see some improvement from it, it goes. I will stop and retest ones which appeared to help to make sure it wasn't just coincidental. I'd rather be spending my money on tests I haven't had but should of had then wasting my money on supplements with aren't helping

Even with all this Ive ended up on a large amount of supplements, unfortunately all things I do actually need.

Note. I don't do at all now days what I call the Russian roulette thing with supplement trials. I only take trial things when there is good indication that taking it may work for me (otherwise I can waste my money on over 20 different supplements and find none of them did a thing!!. I learnt the hard way not to go about things like that and base what I trial on things like via test abnormalities Ive had).

My exception to this would be to Vitamin B forms as they from my observation have a good chance of helping a little many of us and a trial of the methylation protocols.

I suggest to start cutting back on your supplements. Maybe one type every 2 months and watch to see if you get a decline from doing that.. if you do, test it by adding that supplement back and at later date try to remove it again to confirm you need it (I'd suggest work to removing others in meantime and retest it again last). If you are on heaps, its going to be a slow process to work out if any of them are helping at this point. If you stop them all at once and get worst, you aren't going to know you need to add back.

In future try adding and testing only one new supplement at a time unless its something which needs to be taken in a combo so you don't get in the fix of not knowing what things are doing if anything.

I strongly suggest to sort out what you need and don't need before you go trialing even more things with a lyme doctor. Otherwise it will probably end up even more confusing.

 

[taniaaust1]

I think it's sensible to at least take all essential vitamins and minerals..

That isn't always a good idea for us as with our health issues as they are we can have other things which have been missed including issues with having certain things too high eg I had extrememly high copper which it took me a very long time to find out about.. Taking multi-minerals would of made that worst. Others could have something like the issue which causes high iron.. lots of these issues can cause "chronic fatigue" and other symptoms and many have been misdiagnosed.

Better off testing to find out what issues a person has and what is needed then just randomly taking multi-minerals etc

If you eat healthy and buy good foods eg free range eggs often have higher nutrient levels if really free range.levels and don't have diarrhea/vomiting/absorption issues, you should be able to gain most things from your diet. You should only need certain supplements in the areas you have issues in eg for me I have MTHFR mutation so need some supplements. and my CBS mutation affects my molybdenum level etc

 

[taniaaust1]

Also take smaller doses of some supplements, if you are the type who is sensitive to chemicals and meds. I usually take 1/4 or 1/2. There is one vitamin pill that I take about 1/12th of.

You can also buy powders and fill your own capsules to save money, but this may be too hard for some of us who have low energy.

Also buying a higher dose can save money, if you split it into multiple doses. For example a 400mg of a supplement is not going to cost four times as much as the 100mg bottle.

I do that too as far as buying a highest dose so say I can split it up into 4 or whatever then buying a smaller dose as its then cheaper. (I do that with one of my sleep pills).

I once brought some capsules to fill but it turned out they were quite expensive (maybe they are cheap though online?)

 

[taniaaust1]

here is my list of things..some are new additions that are trials.
GLUTATIONE
VIT D
CHOLERRA
DHEA
PREGNANOLONE
CHO LESS
pqq
coQ10
roberts methylation vit
multivitamin
colostrum
metgentics fish oil
adrenal stress end
cordy chi
turkey tail
ant essence
aderset
linus pauln vit c
acs silver/nano
Niagen
carnitine
alpha liopic acid
NAC
glutamine

That's an interesting list, I notice some of those are very expensive supplements to. I suggest when you start testing which are helping and which aren't, start off by testing the most expensive ones on your list. I dare say that by the time you've tested all these out, you will probably find you are only left with 2-3 regular ones .if that. (don't stop taking anything you take for YOUR known deficiencies)

I've trialed 7 of those in your list in the past but only one of those do I regularly need to take, 2 others on your list I only take as needed eg fish oil if I get ostero arthritis pain, I only take if getting joint pain and Vit C I only take if Im coming down a virus cause it shortens its length in me. It's the only time I find those things help me. It's important to know why you take what.

Consider if you can get your D cheaper as it comes in many forms and doses and you could choose to take it differently to what you are now as there are all kinds of options to taking it. With D deficiency, it doesn't matter us you take it once a month in a large dose or take it daily in small dose as its fat soluable so you wont just pee it out. You just need the right dosage for yourself according to how often you are taking it.

My niece got prescriped D by her doctor and I saw what she brought after she brought it (she was prescribed a high dosage of the powdered form to take once a month). She could got a high dosage in pill supplements online to take once a week and it would of saved her over 90% of what she paid. It would of added up to her prescribed amount of once monthly taking dose she got from compounding chemist (just would of meant her taking 3 pills of a lower dose more frequency/weekly but even then there was the over 90% saving)

 

[cb2]

the fish oil i take because my HDL is very low,the metagenics is expensive but has gotten my HDL up from 30 to 40 so far! the only thing that has. and i have also starting trying the vit c with lysine and proline from linus pauling,,that is supposed to help prevent heart disease.

and i have gotten a good vit d from the lyme dr. although i was taking puritan pride vit d before and it did help my levels, he wanted me to try this liquid form. was wondering if the coq10 at puritan pride is as good as life extension brand? and how do we tell?
I know puritans has great prices..but want to make sure it works?
thanks

 

[barbc56]

I'm still stuck on the urine nasal spray. Does he say whose urine?

Anyway the following is a general look at what you need for a healthy diet.

http://www.health.harvard.edu/healthbeat/are-you-getting-essential-nutrients-from-your-diet

I was really put out about the sidebar as it takes you to a great resource but you have tp pay for it. Sigh. You can probably get the same information from a dietician.

Barb

 

[cb2]

that is a nice link @barbc56 i didnt catch the nasal spray .

food gets confusing for me some people say cut out grains dairy etc. . i try and then i give up

 

[barbc56]

It wasn't me but @dannybex

http://forums.phoenixrising.me/inde...-much-on-supplements.39128/page-3#post-627038

I wonder which food group urine belongs?

 

[whodathunkit]

food gets confusing for me

Last time I'll say it, but seriously...get the Perfect Health Diet book. It's cheap on Amazon. At least read it once. It's a good guide, and could help demystify food a bit. Supposedly it helps raise HDL, too. I can't testify to that because I haven't had my cholesterol tested since I've been doing it more-or-less faithfully, but I'll report back after the 20th (get my cholesterol tested then). Historically, my HDL sometimes has been very low (same level as you), although it's improved quite a bit over the last couple years. Last time I had it tested it was still no ideal, though.

 

[cb2]

thank you for the reminder again @whodathunkit about the book.. i am going to put it in my amazon cart before i forget..but i have to say.. i am terrible at reading or retaining.. i had to go through a laptop change and lost some of the pages i had referred to.. so i appreciate the reminder!

 

[kangaSue]

Would it help if I said you can get the following amounts of supplements every day for free;

• Alanine, total ..... 38 mg/day
• Arginine, total ..... 32 mg/day
• Ascorbic acid ..... 30 mg/day
• Allantoin ..... 12 mg/day
• Amino acids, total ..... 2.1 g/day
• Bicarbonate ..... 140 mg/day
• Biotin ..... 35 mg/day
• Calcium ..... 23 mg/day
• Creatinine ..... 1.4 mg/day
• Cystine ..... 120 mg/day
• Dopamine ..... 0.40 mg/day
• Epinephrine ..... 0.01 mg/day
• Folic acid ..... 4 mg/day
• Glucose ..... 100 mg/day
• Glutamic acid ..... 308 mg/day
• Glycine ..... 455 mg/day
• Inositol ..... 14 mg/day
• Iodine ..... 0.25 mg/day
• Iron ..... 0.5 mg/day
• Lysine, total ..... 56 mg/day
• Magnesium ..... 100 mg/day
• Manganese ..... 0.5 mg/day
• Methionine, total ..... 10 mg/day
• Nitrogen, total ..... 15 g/day
• Ornithine ..... 10 mg/day
• Pantothenic acid ..... 3 mg/day
• Phenylalanine ..... 21 mg/day
• Phosphorus, organic ..... 9 mg/day
• Potassium ..... 2.5 mg/day
• Proteins, total ..... 5 mg/day
• Riboflavin ..... 0.9 mg/day
• Tryptophan, total ..... 28 mg/day
• Tyrosine, total ..... 50 mg/day
• Urea ..... 24.5 mg/day
• Vitamin B6 ..... 100 mg/day
• Vitamin B12 ..... 0.03 mg/day
• Zinc ..... 1.4 mg/day

http://all-natural.com/urine.html tells you how.

 

[digital dog]

The trouble is that most of us try a load of supplements and the same time. We need to try one every month to get a valid picture of what is going on. The trouble is we would be trying things for decades so we throw everything in together to save time and hopefully improve.
I have taken boat loads of supplements but now I only take vitamin C and i will be going back to selenium soon.

 

[barbc56]

@kangaSue

Your post piqued my curiosity.

I always thought urine is sterile but it turns out this is not true. It's normal that urine contains some bacteria even before it's excreted. It depends on how much bacteria is in the urine, as well as other factors that the bacteria becomes a medical problem. It does make sense when you think about it as the colon contains bacteria. I have no idea if this bacteria has any protective effect.

Once urine is excreted, it picks up even more bacteria.

This has changed the thinking of conditions such as frequent UTIs as well as interstitial cystitis. The study cited below goes into more detail.

Now it's being questioned if urine is even good for survival as the salts in urine can make you even more dehydrated. Similar to not drinking ocean water if your stranded at sea.

Urine is not recommended to apply to wounds.

All this information is new to me.

Barb

http://www.stritch.luc.edu/newswire/news/study-debunks-common-myth-urine-sterile-0

 

[kangaSue]

@barbc56 It's all new to me too, as of yesterday. It would have to be the same deal as fecal transplant though which is loaded with bacteria. i.e. only do it with your urine if your urinary tract health is good or get it from a healthy donor.

 

[barbc56]

Can you get it in a shot or IV? I can't get over the ewww factor!

Barb

 

[cb2]

@whodathunkit i did get the perfect health diet book.. Yay! only challange is.. i forget i dont deal well with reading much boo! i was hoping there were be an easy to fiind / spell out food plan idea. maybe what i need is a book with just lots and lots of very easy meal plans or food ideas- do you know of one? something i can turn to and pick a food and say.. ah this fits in my taste buds for now! i am challanged when it comes to food.

 

[Scarecrow]

@cb2 Here are a couple of websites with recipes

http://perfecthealthdiet.com/recipes/
http://10minutemeal.com/

The PHD website is more interesting but the recipes predictably take a fair amount of effort.

The other website is great for quick and easy meals.