posted
During our last visit to the llmd's office, my wife was asked to have high dose B-12 shots. The normal local pharmacy does not have such a high dose ones so ithey need to be specially ordered and shipped from Compunders in NY.
I just got a call from them saying that the shots need to be delivered overnight because they need to be refridged. The shipping is $35 plus a month worth of shots at $100.
My question is do any of you use it and how it helps you? She is now up to more than $500/mon in supplements, plus $135 for B-12, plus supplements we have to buy from local health food store. I calculated, without counting the doctor's visit, antibiotics (which so far has been about $200 out of pocket), the "supplement alone is $800 a month or so. And this is not a one-month-deal as far as I understand.
Considering that she just lost her job due to this disease, and now the outrageous costs ahead of her, how do people manage?
Sorry, with a 4 yrs old in daycare, I am forced to "balance" the budget.
Posts: 822 | From midwest | Registered: Apr 2009
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posted
Have you looked at getting supplements online instead of locally?
iHerb (my recommendation), VitaCost and Swanson's tend to have much lower prices than local retail.
$500/month in supplements alone sounds kinda insanely high, to me. Anything in particular she take that is super expensive? Perhaps there are lower cost alternatives.
You could, for instance, consider high dose sublingual B-12 instead of shots. They might not work as well, but then again, they may. Your doc could always just test her B12 levels after trying the lozenges instead.
Posts: 584 | From NY | Registered: Feb 2009
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posted
I don't have the list in front of me right at the moment, but I think the most expensive are Theralac and NT factor, each costing more than $150/mo. The ALAmax is like $75, so $500 does not go that far.
I am going to keep it up for a couple of months and will have to be forced to shop around for alternatives.
To give the llmd credit, his office does not sell for more than what I have searched on the internet for the exact brand and product so I can't really blame him.
Posts: 822 | From midwest | Registered: Apr 2009
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
Budget is a huge concern for most of us. I tried methyl B12 shots for several months hoping that they would work (for fatigue and neuropathy).
When I didn't notice any improvements with the shots my LLMD recommended that I try a product called Metanx. Metanx is a prescription tablet with methyl b12 and the active forms of folic acid and B6. It was created for people with diabetic neuropathy.
You can read about it here: http://www.metanx.com/WhatIsMetanx You can also print a coupon card from their website that will reduce the out of pocket cost.
Many health food stores also offer B12 shot clinics where you can walk in, pay a small fee, and get methyl B12 shot (administered by a doctor or RN). You might call around to see if this is available at your local health food store. This might be a good way you see how your wife will respond to the shot before purchasing a full month's supply of it.
This is the pharmacy where I purchased my methyl b12 shots. They were cheaper than the NY pharmacy. You might also give them a call to check out their current prices. http://www.tristaterx.com/
What other supplements is your wife taking? $800 per month is outrageous. If you feel like it, PM or email me with a list. I would look it over to see if I could find better prices for you.
Posts: 5237 | From here | Registered: Nov 2007
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
You could save on probiotics by switching from Theralac to VSL#3 capsules.
Two VSL#3 capsules contain 225 billion. You would have to take 7.5 capsules of Theralac to get the same dose!
One bottle of VSL#3 (60 capsules) cost $52, if your wife takes 2 capsules per day the bottle would last one month. You can order VSL#3 directly from the company's website. Shipping is fast and free.
Of course, this is just a suggestion. If you really like Theralac stick with it.
Posts: 5237 | From here | Registered: Nov 2007
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posted
$150 for NT Factor? I guess she takes a really large dose? And a lot of Theralac daily too. An entire bottle goes for around $40, so I guess she's taking several caps daily. A bottle of ALAmax online goes for around $50, from what I saw. I'm also not sure if there is a real difference between it and alpha lipoic acid you can get anywhere.
One option, if your insurance will pay for it, is VSL #3 DS (prescription probiotic). Some insurances pay for it, some don't. But if yours does, you can ask your doc for a script for 4 daily, giving you 120 paks for a single copay. And only a partial dose is needed daily, so they'll last a real long time.
Posts: 584 | From NY | Registered: Feb 2009
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posted
She takes 6 NT factor a day and 2 Theralac. The one NT factor with 90 count for $75 or something and 2 for $150. Same as Theralac (2 bottles of 30 caps each).
Thank you for the hint about VSL #3. I will check into it.
Posts: 822 | From midwest | Registered: Apr 2009
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posted
Speaking of GL protection, is there any reason one takes three different kinds - theralac, Saccharomycin DF, and Ultra Flora Plus DF? Will VSL #3 be enough?
She takes pretty heavy load of antibiotics.
Posts: 822 | From midwest | Registered: Apr 2009
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Sammi
Frequent Contributor (1K+ posts)
Member # 110
posted
wtl, I suggest calling local compounding pharmacies to see if they can make them for you. One hundred dollars for a month supply seems high to me. Mine cost about $51.00 for a one month supply (I inject every day).
I also recommend doing a Google search on the supplements your wife takes. You can often find things much cheaper on-line.
I use VSL#3 DS (Double Strengh) and highly recommend it. It comes in refrigerated packets that each have 900 billion cultures. You add it to water or another beverage and drink it.
Posts: 4682 | Registered: Oct 2000
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merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
my B12 shots are about $1 each and dont need refrigeration,
what dose are you on?
Posts: 3905 | From USA | Registered: May 2007
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posted
You guys are great. Now I am begging for the cheaper alternatives for th elist that she is currently taking:
DIM 2 @ am Oncoplex 1 @ am NAC 1 cap x 2 Alamax CR 1 pill x 2 MedCaps 2 caps x 2 Ultraflora 1 cap x2 Saccharomyces 1x2 Theralac 1 x2 NT Factor 3 x 2 Phoschol 3 @ am Glutathione suspension 4 ts each time
She does not have any preference, at least she can't really form any opinions on any of these. The list above is $500 a monthly supply, and I beg to reduce the cost if I could find a suitable set of alternatives that would cost less and not substantially sacrificing the quality.
Thank you all.
Posts: 822 | From midwest | Registered: Apr 2009
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I suggest just plugging in everything into the search function at iHerb, and see what supplements match up, and which prices are cheapest for you.
Posts: 584 | From NY | Registered: Feb 2009
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I will go through each of them as suggested. Thanks, Lemom.
Posts: 822 | From midwest | Registered: Apr 2009
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Just posting for you what these shots may be able to do for your wife:
From p. 29 of Burrascano, "Optional Supplements for Special Circumstances"
"METHYLCOBALAMIN (Methyl B12) Methylcobalamin is a prescription drug derived from vitamin B12. This can help to heal problems with the central and peripheral nervous system, improve depressed immune function, and help to restore more normal sleeping patterns. Many patients note improved energy as well. Because the oral form is not absorbed when swallowed or dissolved under the tongue, Methyl B12 must be taken by injection. Dose is generally 25 mg. (1 c.c.) daily for 3 to 6 months. Long term studies have never demonstrated any side effects from this drug. However, the urine is expected to turn red shortly after each dose- if the urine is not red, a higher dose may be needed or the present supply may have lost potency. The injectable form of this is not available in regular drug stores. It must be manufactured (compounded) by specialty pharmacies on order."
Looks like Burrascano recommends it for 3 to 6 months. Judging by your wife's symptoms, this shot might really be a help to her.
I have known people who swore by these shots! I believe they took them once per week.
Good thing your friends are all giving you the benefit of their experience. We know how costly this is to do at first. Hopefully, as the months go by, costs will go down for you because you will be able to stop some things like these shots.
The start of treatment is the most costly time. You have all the tests, the high cost of the first appt, all the supplements. But, you don't continue taking all these things indefinitely. As symptoms go away, you are able to eliminate some supplements, etc.
Also, if money gets tight, call and ask to have the doc prioritize everything for you so that you know the ones your wife absolutely must have and the ones you can stop if need be.
The doc is prescribing OPTIMUM treatment. Great if you can do it. If you can't, then have things prioritized.
You are saving your wife's life, literally. Hope the day comes soon when you have her back with you as before!!
Posts: 9931 | From Maryland | Registered: Dec 2007
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Also, as sammi said, try to find a compounding pharmacy near you. If you have one (and you most likely do), they will make the shots for you and you drive over and pick them up.
It will save you a lot of money. In my area, NeighborCare is the name of a compounding pharmacy. They make special order things. No middle man. No high cost refrigerated shipping needed, etc.
Knowing where to find a compounding pharmacy will come in handy throughout your life. They are great places!
Definition of compounding pharmacy: the mixing of drugs by a pharmacist, physician, or veterinarian to fit the unique needs of a patient.
Call a few pharmacies and ask if they know of a local compounding pharmacy. Call your primary care doc's office and ask them, etc. Just a few ideas on how to find one.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
TF - Getting her back to her normal self has been the goal. Thanks for pointing it out.
I have passed the point to have any personal "luxury" items left for myself, not hardly even a cup of coffee these days. Sold all my "toys" with any cash value.
But like someone says - I am not alone in this journey. I am sure you all have gone through the similar before, which makes your opinions so valuable to me.
This disease really sucks...
Posts: 822 | From midwest | Registered: Apr 2009
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WildCondor
Unregistered
posted
Methyl B12 is really wonderful. Make sure you take it in the morning or it can keep you up at night.
The cost varies depending on what the dose is. Usually is is Methylcobalamin 25 MG/ML and 1 cc is injected daily or every other day. For 30 shots my cost is $90 per month and they are pre-filled and must be kept in the fridge. it will make your urine pinkish red which is normal.
IP: Logged |
posted
Good news and bad news on the local compounding pharmacy - the good is that we do have one here. The bad is that they will charge $275 for a month worth of the shots. That's more than a double price than the shipping from NY.
Can anyone let me know what compouinding pharmacy you use for the price you referred to? My current one is charging $100 for a month syupply plus $35 shipping, as I mentioned.
Thanks all again.
Posts: 822 | From midwest | Registered: Apr 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Consider sublingual. It's the next best absorption method after shots - for B-12.
You might just do the regular dose of B-12 shots and just see how that goes - maybe adding in sublingual.
If this is for a separate medical condition that requires more, insurance might cover it. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
sammy - I called the Tri-State and apparently they told me they can't fill any prescription for any out-of-State doctor. Is that your experience?
Posts: 822 | From midwest | Registered: Apr 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
She has been on "regular b12 shots for a while now, with little help. Her current doctor believes that she should get a high dose, more intense B12 at 1cc 25mg daily. I am planning to give it a try.
Posts: 822 | From midwest | Registered: Apr 2009
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Sammi
Frequent Contributor (1K+ posts)
Member # 110
posted
wtl, I sent you a PM.
Posts: 4682 | Registered: Oct 2000
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WildCondor
Unregistered
posted
Fallon Wellness Pharmacy in Latham, NY it's $99 for the 25 MG/ML plus shipping in a cold box for 30 doses.
This might be the same pharmacy that her llmd shipped the prescription to. The shipping is $35, they told me. I was looking for something local first for convenience and hopefully cheaper due to shipping.
Posts: 822 | From midwest | Registered: Apr 2009
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
wtl, your mailbox is full.
I know, your many, many friends are all writing to you!!!!
I am trying to send you a PM. Let me know when you clean house.
Posts: 9931 | From Maryland | Registered: Dec 2007
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I learned a lot about B12 and folate and glutathione metabolism,,, Freddd has a fascinating story of neurologic recovery using active forms of B12 and folate.
He recommends the Jarrow 5mg methyl B12 and says to place it between your upper rear gum and cheek and hold it for 45 min. He thinks you can achieve 95% of the results of injectable via sublingual.
Posts: 211 | From NC | Registered: Dec 2005
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posted
I started taking Methyl B12 along with methylfolate and a couple other things. I have been following the CFS protocol for restoring your methylation cycle.
I didn't do the B12 shots for many months. However, I knew it kept getting lower and lower, and when the moons (lunulas) completely disappeared from all my fingers and thumbs, I ordered the injectables.
They help me sleep 8-10 hours, less anxiety, I am now off my anticonvulsant, I feel MUCH less overstimulated, my nervous system is functioning more properly, I am getting viruses again for the first time in years (a good thing), etc.
Now, I haven't had a huge increase in energy, but I have already had a huge increase in wellness after 20 daily shots. I feel more at peace.
The sublinguals are crap. If they make you feel much better, it's probably the placebo effect. I don't care what a Japanese journal says about them. I tried them, and my B12 was running away from me.
B12 shots have been one of the best things I have done for myself.
Posts: 967 | From A deserted island without internet access | Registered: Sep 2009
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