I began Primaxin IVIG in late December. - 25 grams at end of December - 30 grams exactly four weeks later
I have Bart, Babesia, and lyme. Prior to IVIG, I had debilitating fatigue and felt I was dying.
Two days after my first IVIG treatment, I felt like a new woman! Felt awesome for two weeks then crashed with fatigue.
Almost two weeks after my second IVIG, I�ve hit a wall again. Completely fatigued - almost bed ridden. My labs are looking better� Babesia is now gone after antibiotic therapy for almost two years.
How do so many get IVIG every three weeks? I asked my doctor about this and he said unless you are extremely ill (dying), you can�t get approved for IVIG but every four weeks.
I initially received approval because my total IgG, IgG subclass I, and IgG subclass 3 were below range. He thinks my issue is genetic based upon some tests he ran.
Any advice would be appreciated! I have committed to go back to work this month but don�t know how I can function feeling good for two weeks, like s@it the next two weeks.
I am thankful the treatment is working but so frustrated that its effects are gone after two weeks.
[ 02-05-2012, 03:30 AM: Message edited by: ichelp73 ]
Posts: 81 | From Birmingham, AL | Registered: Mar 2009
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Pocono Lyme
Frequent Contributor (1K+ posts)
Member # 5939
posted
Hi,
The same thing happens with me except for the part of feeling great. I do feel better for 2-3 weeks and then crash.
I've been doing IVIG since January 2011. I discussed the 2-3 week post IVIG crash with my LLMD and he suggested getting it every 3 weeks but later we collectively agreed to pass on that idea.
He did give me Nuvigil to try mostly for the brain fog. That has been working great for the fatigue and also helps with the brain fog and spacey feeling.
I'd suggest asking your doc his/her thoughts on trying Nuvigil?
-------------------- 2 Corinthians 12:9-11
9 But he said to me, �My grace is sufficient for you, for my power is made perfect in weakness.� Therefore I will boast all the more gladly about my weaknesses, so that Christ�s power may rest on me. Posts: 1445 | From Poconos, PA | Registered: Jul 2004
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posted
Thanks so much for your reply Pocono. Great idea!
I have tried several stimulants in the past. - Concerta xr 34 mg - Concerta xr 54 mg - Adderal 20 mg (usually take a fourth or half) - Provigil
The provigil made me feel kind of wired but still tired. So I opted for trying the others. I actually tried some of my old Concerta this AM after reading your message. I had originally stopped these meds as my adrenal gland was healing as I didn't want to place a strain on it.
But if it comes down to losing my job... or taking a stimulant. Guess what?? I'm taking the stimulant!
I also spoke with my hematologist today - poor thing, I called him on a Sunday... He thought I should try a weekly sub Q (shot) spread over the same dose as the monthly infusion. - Since the monthly infusion appeared to be lasting only 10 days.
Does anyone have experience with IVIG sub Q verses the monthly IVIG infusion? My understanding is that if I did 30 grams IVIG monthly... I'd instead be doing < 10 grams weekly. Same 30 gram dose just spread evenly over four weeks.
He also said trying to go to every three weeks after only two infusions may send red flags with the insurance company and I could get audited - so that option is out!!
Any advice would be greatly appreciated.
Posts: 81 | From Birmingham, AL | Registered: Mar 2009
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