Hey lady...I'm so sorry you have to go thru this! Is there an infusion center you could go to instead? What about a oncology place where they give chemo? Can you get home health to come to you? Switch to subq (which is cheaper)? Just some ideas.

I don't have any answers about the B12. I don't take anything. My memory is so bad I can't even remember to take one antibiotic every day lol

so sorry
no clue about vit b i would follow directions on the bottle though or ask pharm after having a daughter in pharm school i am realizing they know more about the meds than docs so pharms are a good source for med info.
you know the answer to stopping ig replacement you will get sick again...being sick and miserable is worse than being inconveniced and miserable. being sick makes you have to depend on others to help with your care. inconveince you can handle on your own.
take it from me, i have been very sick over the last yr and at times i have been unable to care for myself ie food prep driving... that is a horrible feeling my goal in life is to be well enough to never have to depend on others for care i dont want to be a burden i want to be part of the family not an interuption. not that they would feel that way...but i do.
so you know the answer to that.
hugs pam

I agree w/ Kelli and infusion center, Cancer Center or a home health Nurse might be a good start to check into...

Good Luck!

Well I was going to an hematologist/oncologist where he was treating his chemo patients in his infusion room, but I will ask him if he knows any other options.

Here is the story, You can have an infusions it in your physician's office or at home, it's just that the doc or the home care company will lose money giving it to you.

It really is pathetic that Medicare does not adequately reimburse for home infusions for CVID unless the patient is home bound .

The whole problem is due to an inadvertent, unintended consequence in the a Medicare revision law passed by congress four years ago. In short the law put a unrealistic pricing formula for all IViG products (AWP) and prohibited reimbursement for nursing and supplies (tubing, pump, needles etc. )

Hemophilia was able to get a carve out , we were not.

The IDF ha worked to have correcting legislation introduced in the past three Congresses, but we have been unable to get it passed. I've been part of the lobbing effort on the hill the past two years.

In the last Congress we had 22 co-sponsors and the Senate bill was sponsored by John Kerry. Our bill had a 10 to 1 cost saving but since we are such a small population we were unable to get it to a vote. There has never been any opposition to the bill, it's just that we are such a small constituency we have no traction.

If everyone on this board is not continually pestering your Representatives, you are part of the problem. The IDF website has an advocacy section and I urge / beg everyone to get involved.

This brings up two scary issues. First is that private insurance companies tend to follow what Medicare does. second it show what happens when the federal government gets more involved in health care. It becomes a huge entity that is impossible to change anything . Since I am 62 . . 63 next week, . . . . . .you can fill in the blanks.

By the way, your hospital s not happy about the system either. They lose money on your infusion.

Hopefully you can work out a protocol with the hospital . .perhaps getting it in the cancer center or a as day patient. Perhaps they will let you call early in the morning and confirm you are coming in so they can start mixing your meds. Perhaps you can change to a brand that is already mixed. Perhaps you can go on subQ.

The best suggestion I can make is that perhaps you can try to be more proactive and maybe, perhaps you can improve your situation. I would try and involve you immunologist in your effort to improve your situation.

good we all know this is not a good situation.

Your congressional representatives are the only long term solution. THEY ARE THE ONES THAT CAUSED IT.

Hi Stimpy,

Sorry about the monkey wrench in your infusions. That sucks, but it seems to me that if you go without your infusions you will end up exhausted like you were months ago when they got interrupted by your infusion center closing. Remember how you said that some days you were too exhausted to even get out of your chair? It seems (from the sounds of things) that your system is still trying to recover from that.

As for B-12, I take 2 1000 mcg sublingual tablets every day. I get them for about $3 / bottle of 100 from Trader Joe's.

I have a word of caution about vitamins in general. There are water-soluble vitamins and fat-soluble vitamins. The water-soluble kind (like vitamin C) are relatively safe in that if you ingest too much, your body will flush it out by giving you diarrhea. The fat-soluble gets stored in your body fat and if you take too much of that kind, then you can get very sick or possibly even poisoned by them. I believe B vitamins fall into the fat-soluble category, but I'm not positive of that. I do have a good website that I reference for information of vitamins and herbs, as well as drug-interactions with them. The website is for the renowned brain doctor who has PBS specials that are awesome! His name is Dr. Daniel Amen. Anyway, here's a link to the reference on vitamins & minerals (you have to scroll down past the supplements that they're selling to find an alphabetic list) http://www.amenclinics.com/brain-science/natural-supplement-research/

The information on that web page will also tell you about clinical findings of the effectiveness of each vitamin/herb if there is any clinical research available.

@mark info on the bills????? i will start writing letters what to include? since you know it would be helpful if you could give a summary and i can take it from there.

@ mark i know some of our AL reps from the work i did in education, i did lots of grant writing, i was very involved in creating an $100,000.00 with all donataions and grants so i know a few i just need more info to get to them.

@mark: Yes, I think I need to talk directly with Dr. Felman, the oncologist/hematologist that has been giving me my infusions for the past two or so years, when I originally started with him we did it in the hospital because the way he explained it to me, is that medicare wants me to be in a hospital setting in case something "goes wrong", crazy, huh? and, besides, there is another hospital 1/2 block from his office, San Gabriel community, with an ER there, literally two minutes away if I had a heart attack or something. I mean what is the ABSOLUTE WORST THING THAT COULD GO WRONG? Anapylaptic shock? Somehow I talked him into doing it in his office and we have been doing it, no problem, but somehow they caught on. I will find out if Beverly Hospital has a infusion center. And you would think that when the nurse puts in the orders at the hospital, don't they take care of the medicine with the pharmacy in the hospital, I mean and since it is on a regular basis each month doesn't the hosptial have it figured out? I mean its like why DO I have to do all the research and figure everything out for them, it should be a fairly easy task if everything ran smoothly and organized. I sorta feel like I don't want to "push the envelope" with things because I am on Medical, meaning people look down their noses at me, so maybe I need to get a little more assertive with those feelings and expect quality care. Just saying, I suppose I feel "meek" when trying to find out why it cant be done in an easier way. Maybe I should switch to sub-Q, to be honest I think I would rather do it myself and be in charge of things, I am so tired of being dependent on the system at hand.

@PB OOooooothanks, yes, I started taking 2,000 mcg of B12 and a multivitamin. I have energy, but I crash. I DO NOT COMPLAIN TO MY HUSBAND how tired I am, cuz he's burned out about hearing about it, but sometimes he looks at me and tells we I look white, like a ghost, then he tells me maybe I need Iron, well I am 54, and going through menapause, and women our age dont need to be on iron, according to Dr. OZ. My husband also says he can tell when I am really bad, because I can barely walk, sometimes when I am moving I get dizzy, like the ground is coming up from under me. DOES ANYBODY ELSE GET DIZZY? from being tired?

Thanks for the feedback, I will persist with my doctor. I just don't want to upset him or get him frustrated, he is SOOO NICE AND GOOD TO ME, I don't want to make anything hard on him. But I will ask him how we can possibly make it easier on BOTH of us.

thanks everyone for the feedback. I will contact IDF and let the legislators know. I mean if we are going to do this for the rest of our lives...........

I definitely have issues with dizziness! Especially when I'm sick, but before I got on the epilepsy meds (and long before I knew I had it), I would be dizzy for weeks at a time. I was often in situations where I had to drive feeling that way (believe me, I'd do everything I could to avoid it), and that was so scary! Since my epilepsy diagnosis and the medication, I rarely get dizzy except when I'm sick or exhausted.

I hope that the vitamins help! :)

Yes, PB the vitamins do seem to help, it is not the debilitating fatigue, like I could just lay down and sleep for 3-4 hours. The B12 is giving me more energy, so thats good. Gonna check in with my doctor about any alternative he can give me as far as WHERE I can get my infusion, I dont mind going to a cancer center, etc. Its just the whole hospital thing just seems like a gigantic waste for THE hospital and Me, so much red tape, it seems like it would cost medicare more. Crazy, huh?

as I aid in my post we all need to pester our congressional representatives, we deserve what we get. The answer to your question is it costs the government tens or hundreds of million dollars not to allow IViG as home therapy. But your representatives caused the problem and they are the only ones who can fix it.

and I forgot, you are confusing the hospital who cares about a Medicare PIDD patient they lose money on. . . I often think they want you to go somewhere else.

o.k. mark so if i'm hearing you right, the hospital DOES NOT want to have me as a patient, because they are losing money, right? So who or what would cost medicare the least, I mean what situation? Home health, cancer infusion center? I need to be armed with suggestions for my doctor.