lax mom
Frequent Contributor (1K+ posts)
Member # 38743
posted
I need to vent.
I am so over having to buy all of these supplements.
When I FINALLY get my sad little budget straight, another Dr appt comes along and BAM! I need another group of supplements...not optional ones or $5 ones either. (And BAM! you need to follow-up in 3 weeks...not 6-8 weeks this time).
droid1226
Frequent Contributor (1K+ posts)
Member # 34930
posted
I hear you lax...I went on IV for 4 months after being completely bedridden. I got up to about 70 % then insurance cut me off and now I'm slipping back. To pay on my own is thousands monthly. Undo-able.
Supps..dr. appts...diet choices. I don't spend a dime on anything not lyme related.
posted
Ugh!!! Can totally relate. It's making me beyond broke. I just can't continue some of them due to no $$!
-------------------- "The simple things can get you through the hardest times." Posts: 628 | From Connecticut | Registered: Sep 2010
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lax mom
Frequent Contributor (1K+ posts)
Member # 38743
posted
Yep droid...my family doesn't spend a dime on anything not lyme related either. BTW have you tried Infuserve for IV meds? Maybe they would be cheaper?
My Urologist RX'd a med for UTI's, but my LLMD said it's not ok to use, I need a supplement instead...I cannot get out of this supplement maze and it's driving me crazy.
I was actually having a GREAT day before my phone appt.
skies: I hear ya...beyond broke is the word.
I hate to be a wet blanket...but this issue is weighing on me right now.
posted
My doctor doesn't dictate my supplements unless they are Lyme related like Arteminisin or cryptolepsis. I have my own list of what I feel I need to take. It does cost too much, but when I miss my supplements, I crash.
Overload isn't good and I think we all know what works and what doesn't. Simplify your list and see how you do.
Infuserve is cheaper for IV, but ask them to loan you a pump so you can get you abx in a syringe. It is a lot cheaper.
-------------------- Faithful
Just sharing my experience, I am not a doctor. Posts: 2682 | From Colorado | Registered: Oct 2009
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droid1226
Frequent Contributor (1K+ posts)
Member # 34930
posted
Lax, I have called them. But even still, I was on 4 at the same time and no matter how you cut it, it ain't cheap. Even Infuserve at the cheapest they can do is still a lot! But it was working.
posted
With buying some of my supplies in bulk outside of Infuserve, I have gotten my monthly IV abx down to around $215 a month from them. Where can you do IV that cheaply? And my husband is on IV too so that is twice what I quoted. That is less than I used to pay for just myself 6 months ago.
Unfortunately I take a lot of supplements and definitely have pill fatigue, but I am getting better and not fooling around with it. All of my supplements either detox or support adrenals, thyroid and hormones. If one goes down, so do I.
I feel down just like everyone else over taking so many pills and spending all my money on abx and herbals plus supplements.
I just made a 1700 mile move packing up a house and a year ago, I would never have been able to do that. With progress like that, I am going to suck it up even if I don't like it. I want my life back and it is coming!!!
-------------------- Faithful
Just sharing my experience, I am not a doctor. Posts: 2682 | From Colorado | Registered: Oct 2009
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posted
Dear lax mom, hang in there. It is not easy losing so much in our lives and having our families have to also sacrifice for us to go to the docs, get scripts, buy supplements, etc.
You are not alone. I am so sorry for the pain and frustration you feel.
One day when I was experiencing a similar type of crisis, emotionally and physically, I came on to vent and ask how others cope.
I'd semi-jokingly suggested to my husband that the family should just find an iceberg and set me afloat. Our daughter heard me and chided me that we could lose everything and just have each other and it would be okay with her.
Maybe we should all start our own Lyme-supplement company, for I do know what you mean about the docs having their own stake in the companies whose products they recommend for us.
Sending good thoughts, a prayer, and hugs your way.
-------------------- 'Hope' is a thing with feathers, that perches in the soul-- Emily Dickinson Posts: 160 | From Indiana | Registered: Nov 2012
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posted
Certain supplements you may need to get in a professional formula but try getting some from Vitacost if possible. Much cheaper and a good quality selection. Things like Alpha Lipoic acid and N Acetyl Cysteine, CO Q10 you can get for much less.
I hear ya lax mom...it gets very expensive.
Herbs add up quick too! I sold a gold bracelet once to rationalize paying for supplements. Not because I had to...it just bothered me to be constantly handing money out for them!
-------------------- unsure445 Posts: 824 | From northeast | Registered: Jun 2008
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posted
I see my LLMD every three months and he insists I bring a sheet containing all my supplements (dosage and frequency included). Most things are what he wants me to take but others are and error.
I ask him each time what I can drop so perhaps you can your LLMD the same.
Posts: 199 | From Let's Go Pens! | Registered: Apr 2010
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Silverwolf
Frequent Contributor (1K+ posts)
Member # 9196
posted
Hi <<<<< lax mom >>>>>,
I hear ya', it can be doggone expensive to get the necessary supplements.
We found a market near our new to us place,that sells a good many of the supplements I need.
They also sell,many GF products,and organic meats and produce.
It is still spendy,so I compare brands and prices, we may still end up getting some supp's on-line.
It is tough at times tho'.
Extra hugs for all who are in the same boat.
Silverwolfi here.
-------------------- 2006,May-August2006 Dx w/ Lyme/Bartonella/White Matter Lesion Disease on Brain. [ Clinical Dx w/ two positives and several IND's on the tests from Igenex ], Prior Dx of CFIDS/CEBV 1992, and FMS '93-'94 Diabetes*2 Dx 10/'08 Posts: 3581 | From SE Idaho | Registered: May 2006
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lax mom
Frequent Contributor (1K+ posts)
Member # 38743
posted
I would be ok if, when a new supp was added, another was taken away...but things keep getting added and nothing gets removed. It's impossible to budget like that.
Today was the straw that broke the camel's back because my Rx from the Urologist was only $3!!!! but the supplement to replace it was close to a hundred.
It kind of makes me want to keep my mouth shut about things my other specialists prescribe...but I know I can't do that.
posted
If I took everything the LLMD wanted me to take, it would be worse than it is now. I take what I have to take to keep my blood work good so I can continue IV. If my enzymes go up, I have to get off the abx.
I do gag some days, but the supplements give my body what my food can't. I am eating better this year, but still can't stop taking the supplements. Some are for pain so I don't need narcotics.
-------------------- Faithful
Just sharing my experience, I am not a doctor. Posts: 2682 | From Colorado | Registered: Oct 2009
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beaches
Frequent Contributor (1K+ posts)
Member # 38251
posted
I just wish there was a way to purchase just a week or 2 worth of supplements/herbals/meds/homeopathics so you could try them for a reasonable period to see if they're feasible for your particular situation.
Instead, we're forced to purchase things in monthly increments or more. And let's face it, so much of it is useless or intolerable and money down the drain.
I have so much "inventory" in my cupboards. I try to save whatever I can in the event one of us can try it down the road. I go through my stock periodically to discard what has expired.
It sickens me that we've spent such an incredible amount of money on things that frankly haven't helped.
LAX, there is a great supplement to prevent UTIS. This has to be purchased through a doc's office. Here's the link to read more:
posted
My integrative doctor will give me samples now because so many supplements make me sick. Yeah, it is terrible to spend the money on a bottle of something when you can't take it.
I just told all of the doctors that they can make suggestions but I will have to decide if I want to try the supplement or not.
So far, no one is giving me a hasel about it. I think that Iherb does trial sizes of a lot of supplements. Maybe you can find some of them there to see if they make you feel worse or not.
-------------------- Faithful
Just sharing my experience, I am not a doctor. Posts: 2682 | From Colorado | Registered: Oct 2009
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posted
Thanks TuTu, I never noticed that post..very helpful info!!
-------------------- "The simple things can get you through the hardest times." Posts: 628 | From Connecticut | Registered: Sep 2010
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Once in awhile I get upset when I think about how much money we spend on supplements. We could have a really nice house and new cars, vacations ect.. all paid for by the thousands and thousands I've spent on supplements for the past few decades.
On the other hand, they have kept me afloat for years. Other family members who are sick like me and don't take supplements are in really bad shape or dead.
When I see how much some of my family members are suffering I often thank my lucky stars that I can afford to take what I need. We give up a lot to pay for them but it's worth it. What good are the things we can buy with the money we spend on supplements if we are too sick to enjoy them or dead?
I search the internet looking for good deals on supplements and have saved a ton of money. You can often get free shipping and coupons. I also use ebates which gives me a percentage of my purchase back from vitacost and swansons.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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posted
Try extrabux for rebates on vitacost, you get more back than you do for ebates.
The way I look at it, is you have your health until you don't. Then we all work hard to get it back. It is not easy but we are all worth it. There are no "things" more important than my health or the health of my husband.
I can't give up. God still had work for me to do in this life.
-------------------- Faithful
Just sharing my experience, I am not a doctor. Posts: 2682 | From Colorado | Registered: Oct 2009
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poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
Trying to figure out what works is not always easy.
If you don't think something works, then just tell the doc you can't afford it.
Posts: 2888 | From USA | Registered: Mar 2004
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