How does anyone afford the supplements?

[Anonymous]

Seriously, I was thrilled to find this website. I liked what I read. I had tapered myself off of meds over a four week period before I even found your site. I went to the site to look at the supplements and was floored by the prices! Is this simply another scam for someone to make money? Who the hell can afford this stuff when one is on disability? So here I suffer every waking moment with head zaps, fogginess, light and sound sensitivity, hot flashes, and more. Unfortunately, this site got me excited in the thought that I could have these symptoms reduced…well, I can barely afford to feed myself, my daughter and now my mother. I know my being heated is withdrawal related, but really, the cost is absurd! It’s great that many of you have the money for this, but not everyone does.

[tbird2340]

What supplements are you referring to? I know a lot of us take supplements but there isn’t really a one size fits all..

Some of us take tons, some of us take a couple.. It’s really a matter of what symptoms you have etc..

One thing you will definitely want to take is probiotics if you are doing the antibiotic protocol and those aren’t that much..

[Dawn]

Nebula,

What medications are you/have you been taking? Do you have insurance that covered those and thereby the expense of the supplements is not offset by no longer having to pay for those medications?

In my instance the initial layout costs for supplements was not cheap, however, nothing about this disorder (not sure what you suffer from) is cheap. The maintenance of the supplements once in place is not so expensive, and the biggest reason for the financial landing in my (or anyone’s) lap is the lack of cooperation with medical insurance, physicians, and the supplement industries themselves in inconsistancies and lack of acknowledgement of their value. We can’t rebuild Rome, however, but if intelligence and insight leads you to truly believe this is the true resolve to your disorder, there is no better way around it.

I completely understand the frustration as my husband has been out of work for almost a year, my medical insurance is $800 a month out of my payroll and the deductible is $5,000/year, PLUS the supplements are NOT covered. So, sigh, I feel your pain there!

I did glean from the members postings and a local CN (Certified Nutrionist) the MOST beneficial items to have in my supplements and stuck with those solely due to costs. I am hoping, ultimately, to rely on those for maintenance/remission of this disease and can say I am well on my way compared to February of this year!
Best,
Dawn

DawnF

[richie]

This is a site that advocates the use of antibiotics for the treatment of rheumatic disease –Some folks take supplements while others do not –it is not part of the protocol SO calm down –in fact your medicare drug benefit will more than cover generic forms of the antibiotic —
richie

[jaminhealth]

I don’t deal with RA, but am challenged with OA and Fibro issues. I did a abx for 3 months way back, but found it was not for me, started losing clumps of hair.

I have tried many supplmenets and take very very few pharma drugs…

My most favorite supplements which I’ve gotten the MOST help from overall are:

Grape Seed Extract (Immune System)
MSM Powder (Joints)
Vit D3 (overall health)
Sea Mussels (omega 3’s) for joints
Magnesium Citrate (joints) Many are deficient.

DHEA (hormones)

Armour Thyroid (script)

I live on a very low “senior” income, below poverty level income, but I manage, it’s only me and I do not much of anything
else but work on my health….

It’s very very tough for those on low incomes, so I do understand….I have my plan and I work it. jam

[richie]

As a matter of fact the doctor who I used up at Harvard discouraged the use of supplements with the reasoning that it could interfere with the effectiveness of the antibiotic {minocin} as not enough is known both about the workings of supplements or the working of minocin in treating scleroderma –he just knew it worked –I would also add his record in treating diffuse scleroderma was outstanding —-I would wish the same results on everyone here –unfortunately he retired a short while back —Some doctors promote the use of supplements while others do not –I believe the doctor in Iowa who is highly regarded in treating rheumatoid diseases does not advocate extensive use of supplements –I had excellent results in treating diffuse scleroderma only utilizing minocin and a probiotic –no other supplement —-
richie

[jaminhealth]

Just from a common sense point of view…keeping one’s Immune System strong is so critical….

I know others with RA and they take an array of supplements….I’m seeing my rheumy on Friday, she is a holistic minded rheumy and I’ll mention this to her, if I don’t forget…..

In all the years I’ve been taking Grape Seed Extract, 17 yrs soon, I NEVER get sick….no colds, no flu, etc……great eyesight, no change in over 5 yrs, gum health is good, many many areas of health improved with Grape Seed Ex…..

[jaminhealth]

Thinking about this issue…a friend started on Grape Seed Ex about a year ago…she deals with arthritis, OA and has very deformed fingers, I’m not sure what that is OA, RA or…..

She asked her rheumy MD about taking Grape Seed Ex and he said, Sure, take it, I do. I think there are a lot of MD’s who take supplements and I even brought this up to my rheumy re: Grape Seed Ex and sent her a good link on it and she had never heard of it…..the link is: grapeseedextract.com

I don’t buy from the company, but they give a very good detailed description of Grape Seed Ex and so much of what it addresses.

Always good to discuss these supps with pharmacist if one is concerned about taking them and their drugs….jam

BTW: More and more research hospitals are using Grape Seed Ex in their cancer research….hearing that it “MAY” prevent cancer back in 1995 is the main reason I got on it….so far so good….I was 57 then, and now soon 74.

[jaminhealth]

I had to stop it too before hip replacement surgery, but went back on 2 days later…it does thin blood, but after surgery one needs to keep blood thin in order not to clot….

It thins and cleans our blood, hence improved circulation and overall benefits….

[richie]

I would think the primary question is how is your OA doing —Doxycycline is many tests have been shown to be very effective in treating OA –Is grapeseed effective in treating OA ? –I would think a major problem in RA , SD and other rheumatic diseases is too strong of an immune system –I might also add this is the science that the biologics are using –while I dont go along wih actively weakening the immune system which the biologics can do –I question the vagueness of “strengthening the immune system ” –this is a common phrase used by many marketers of supplements –not sure what it exactly means — Following a good sensible diet and being sure to include proper nutrition goes a long way in supporting the immune system –I havent had colds -flu –etc etc for as long as I can remember –this without supplements –only taking the antibiotic which has put me into remission –I still take the minocin to prevent relapse —
richie

[A Friend]

@nebula wrote:

Seriously, I was thrilled to find this website. I liked what I read. I had tapered myself off of meds over a four week period before I even found your site. I went to the site to look at the supplements and was floored by the prices! Is this simply another scam for someone to make money? Who the hell can afford this stuff when one is on disability? So here I suffer every waking moment with head zaps, fogginess, light and sound sensitivity, hot flashes, and more. Unfortunately, this site got me excited in the thought that I could have these symptoms reduced…well, I can barely afford to feed myself, my daughter and now my mother. I know my being heated is withdrawal related, but really, the cost is absurd! It’s great that many of you have the money for this, but not everyone does.

Hello Nebula,
I believe all of us who finally come down with a debilitating, chronic illness probably feel overwhelmed just as you do right now. Unfortunately, when this happened to me, there were no online support groups such as RBF BB and several others with treatment philosophies such as RBF. Twenty years ago, even though I had just gotten a PC, there were no “on line” entities such as we have. So, I began reading… one book, article, etc. at a time. So, I truly believe you will learn rather quickly the steps you need to take to get better, because there is no much information and stories you can learn from. Probably the most important place to begin is to begin doing for yourself what you already know is good for you — including control stress, get plenty of rest and sleep, eat those foods that are best for your body/blood type (in spite of what mainstream says, this is very important).

Below, am pasting some information that probably is key to many of us becoming ill. For myself, the cause was having the same recurring illness onsets (about 15 times) over a two-year period, and each time being given an RX for abx… and my physician never telling me I needed to take probiotics to replace the good flora. I never had any of the telltale signs of yeast/fungal overgrowth; but, indeed, I believe that is what weakened my body and allowed [/color]it to become seriously debilitated… from which we can come back, but I believe can leave us (perhaps forever) a lot more vulnerable. However, let me assure you, my quality of life since that time is something for which I will be eternally grateful… even though if mainstream medicine had done their job properly, what happened in my own case, did not need to happen. And why it takes more attention and supplements to give it additional help.

Am pasting information put together for you, since Dr. P who authored this article said it is the reason why we become chronically ill:

http://www.arthritistrust.org/menu_list/articlesimportant.html
The above link contains an important list of many articles.
Below may be one of the most important articles/links in the list

[Valsmum]

Nebula,
What supplements are you referring to? I only take magnesium and vitamin c. They are $3 a bottle.
I have tried different ones in the past but nothing regular.Hope you feel better.Take care.

[jaminhealth]

Richie, BTW: You could be the twin to George Clooney, did anyone ever tell you that???!!!!!

Ok, I didn’t start on Grape Seed Ex for OA issues…..as I mentioined above I started on it for
the reason that it “MAY” prevent cancer….we were told this at a lecture back in 1995….that
was good enough for me to start taking it….

Then low and behold, sinus and allergy issues started going AWAY….and have stayed away…I was a allergy/sinus
queen all my life prior to starting on this antioxidant….

Now, on the OA…all the issues I deal with all worsened after a hip replacement back 21 months ago. I’m one
who was not that fortunate….true, GROIN pain is gone but the Domino effect of the surgery has made Spinal Stenosis,
Spondylothesis, bulging disc, and general DDD all worsen. Worse ankle and knee issues too. IT band damage and anterior
nerve damage all from surgery…..

Fix one thing and so much more can worsen, I’m a testiment to that one…

So is OA issues better, yes and no maybe….maybe things would be lots worse not taking
this antioxidant….

So NOW, I’m doing all I can to stay away from any back surgery and it’s a challenge but I’m sure
working at it.

MY general health is very good, IMMUNE SYSTEM, but the joints are the pits….jam

[Author]

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