I find that my energy level is improving with my infusions. I've stabilized somewhat over the last few weeks to the point where I don't have bad reactions and feel better a day or 2 afterwards.

I also take a multivitamin called Alive! as well as Vitamin B-12 and B-6, Fish Oil and Vitamin C by the ton. It's a lot of pills, but it keeps me going.

I am going to look for that Alive in the stores. Can you get it at Target? I am almost out of my generic brand multivitamins, I'm gonna try something more expensive. My infusions are basically probably 5 weeks apart, by the time they remember me. Just goes that way, maybe I will make sure they give them to me exactly 4 weeks to the day, maybe that will make somewhat of a difference. I know my levels are not what the "Recommended therapeutic dose should be" I think I will push for closer infusion dates.

I too rarely get sick and suffer from fatigue A LOT. Nothing really works for me honestly. I am able to listen to my body more and rest as needed. I run sprints and not marathons now :) and that seems to help me have some good days. If you find the magic pill, let me know!

I'm still getting used to the weekly treatments and battle fatigue on a daily basis. By 3pm I'm ready for a nap which is impossible at work and I catch myself nodding off at any quiet moment that presents itself. I have tried several multi vitamins over the years but they all bother my stomach and within 2-3 weeks I'm sick as dog with a massive cold or flu. Even in summertime! I have recently found a liquid multi vitamin through Vemma that I seem to be able to handle. Just a 2 oz shot of juice daily, that doesn't taste bad either. I'll keep you posted if I find something that helps with the fatigue haha.

Stimpy, I would think that going 5 weeks in between infusions might be your culprit. My immunologist was thinking aloud and said something about me possibly going every 3 weeks to try and combat the joint pain (although this has not happened and I'm hoping and praying it doesn't!) ... I would think that by 5 weeks you'd be dragging as your immunoglobulin numbers would be in ther gutter!

Agree with MiMidge - if you are only getting infused every 5 weeks that could for sure be it. IVIG has a 3 week half life so a LOT of people experience a "trough" in the fourth week, but you are getting that for 2 weeks YUCK! Have you talked to your doc about doing it every 3-4 instead or going to scig and you can increase your levels too? Some people feel that if you raise your levels you will feel better overall (there was a HUGE discussion on it on the facebook cvid board sometime ago and the general thought was over 1000 and people felt their best).

I don't know how you people do it! I mean WORK! I started working "under the table" walking dogs and doing overnights for a dogsitting company. And Gawd, I am whipped! I can't figure out if it is "me" or what. I don't get sick at all (knock on wood) and my husband has SEVERE arthritis in his kness (bone on bone) and he is up running CIRCLES AROUND me everyday! It pisses me off. He is DRIVING ME CRAZY!!!! I am going to ask my doctor to start infusing me every 3 weeks, I can't stand the fatigue anymore. I am going to beg him. I know my levels are probably half of what they should be, these damn doctors just don't understand! Thanks for letting me vent. I am popping so many vitamins to no avail. One day at a time......one day at a time.......one day at a time....LOL

Stimpy, I have a similar health status and feel lucky to be generally healthy. I too have the fatigue issue. I have given up caffeine though because I think the swings are worse for me. Just started IVIG and hoping that this helps and appreciate the vitamin tips. Good luck.

Yeah, just got back from walking all the dogs, etc. gonna call my doctor NOW to get in. I am barely hanging on.

I don't know whether Target carries the Alive! or not. I get mine at Whole Foods. I know they sell out online though. Next time I'm on my computer (rather than the phone), I'll see if I can find a good link to buy them...or at least a store locator. Also, I absolutely have to take them with food, otherwise the B vitamins make me nauseous. If I take more than 2 a day, I won't be able to sleep sat night--they recommend 6 on the label.

Oh, o.k. I have a whole foods near me, I will go there. I called dr. today waiting to get call back, I am going to talk to him about getting my infusion on AT LEAST a regular 4 week basis. I slept all day today, feel a bit better, have a big day of dog walking tommorrow though! I find that all those pep-you-up drinks do you more of a disservice after awhile, you just can't substitute energy that isn't naturally there.

Stimps,
I would hope that you could talk your doctor and your INSURANCE company in to more frequent IVIG infusions. It may not be easy. I believe that the standard in the industry for IV infusions is 28 days. Of course, if you can go for the subq, you would be able to maintain a more constant level. I have my infusions once a month. A couple of months ago because of dr. scheduling conflicts, I got infusions every 3 weeks for 2 months. I cannot begin to tell you the difference it made for me. I felt like a new person. Unfortunately, my insurance company will not pay for that schedule. They say my numbers are high enough on 4 weeks. According to the numbers I am averaging around 900-1100, which is excellent I am told and I'm sure it is, however the reality is, if it was higher it would make a significant difference.

Do the best you can to try to tighten up your infusion schedule, but don't be disappointed if your insurance fights you. I understand completely how bad the fatigue can be. Sometimes I am so tired I will nod off in the middle of the day, I just can't fight it off. Never in my life, until the last couple of years, have I been that way. I was the one who could not sleep anywhere but in my bed. Whoa, what a change.

I don't know about you, but with the fatigue can come pain if I continue to push. And if I continue to push through the fatigue for too long, I end up sick. Does this happen to you ever? I try to listen to my body now to avoid a day or 2 in bed recovering from pushing it too hard. Pacing yourself is obviously the key, but sometimes it is difficult. Fatigue is a hallmark of CVID. Try the pills and juices etc. they may help, but the reality is still that you are a Zebra :), and that won't change.

Good luck with your doctor, truly. If you can infuse more frequently it will probably change your life. Please keep us posted on your quest.

I also know a lot of people who get their infusions every two or three weeks. See if your doc wold go along with that. You could start with the same dose and just divide it appropriately .
I just looked at Amazon.com for Alive!. They have every product and it is highly discounted. You might they that.

Fezzy: Just hearing what you have to say explaining what you go through really REALLY just validates what I am going through physically. How you describe what you go through is EXACTLY what I feel physically at the end of the month. I just DENY it. I just try to push through it and not complain, I don't want to be whining and vetching because I am usually strong and capable of getting alot done. In no way do I like to see myself as a "lazy" person. I am going to really REALLY explain what is going on to my doctor and make him listen and understand, and make him believe that I DO need the medicine more frequently. I think he feels if I have at least a monthly dose (rather every 5 weeks) that I should be "covered" for major infections. Definitely when I get tired and I push myself through it I totally start physically feeling like something bad could happen, like the onset on pneumonia or something bad (sepsis?) Thank you so much for you support and input. It validates me and gives me imputus do do something about it.

Mark: Thank you for the connection to buy the "Alive" off the internet at discount. Also thank you for your input and recommendation about more frequent infusions. I will follow through. Thanks much.

Have to raise my hand to join this group...I am exhausted 24/7-even right after getting 9 hours of sleep! I had my December infusion a week ago Monday, and have felt exhausted since! I also have lost my voice for the most part, and feel like I have a mild flu/severe cold. I did see my immunologist, Dr J, last week two days post infusion, and he saw how rapidly I am sliding down-hill. Anyway, I also told him that when I am at my most exhausted, the symptoms in my hands, fingers, etc. get so much worse, and my hands are ice cold, too. He said we'd run some batteries next month with the neurologist....hhhmmmm..... Here's my list of supplements...
Cinnamon 500mg 1x daily
Super B-Complex 1 tablet 1x daily
Biotin 1000mcg 2x daily
Beta Carotene 25,000 I.U. 1x daily
Cranberry 2000mcg 2x daily
Calcium Chews w/Vit D 1-2x daily

The Super-B has Vit C, B1, B2, B3, B6, Folic Acid, B12, Biotin....still a marginal help, but better than nothing!
Shoshi