Ok, I'm about 4 weeks into my first ever IVIG. I got a total of 125gm over 5 days even though we skipped a day here and there. Bottom line is that I got it all.
The IVIG has a half life of 40 days, which means it stays in me working for 80 days or so.
Please tell me if this sounds like I'm Herxing. I won't hold anyone to anything.
First off, the Vertigo and Headaches I was having went away with the first dose. I had an air hunger attack with the 3rd and 4th dose. Almost quit the IVIG as I started feeling really bad after the 4th dose, but decided to take dose #5 anyway.
At the end of the 5th dose, I noticed my body was aching real bad and has been ever since. My stiff neck got so bad it was making my head shake. My Headaches, confusion, etc. got real bad and have gotten way worse in this short time.
My Anxiety and Depression are all over the place. One minute I feel like I can't live like this anymore and feel so blue and the next minute the depression is lifted and my mood is fine.
My low body temp of 96.5 has been 98.6 to 100.0 ever since the IVIG and my Monocytes remain elevated.
Unfortunately, the Neuro doc. that gave this to me is unfamiliar with the Herxheimer reaction.
I know those of you that pulse your abx do so to allow your body to detox. With the IVIG, there is no pulsing, it's going full force for the 80 days. I know time will tell, but I'm looking for some opinions as to whether any of you think that I'm just caught in a huge Herx without the ability to Pulse.
Remember, although IVIG is not an antibiotic, it is suppose to boost your own immune system to fight off infection in the same manner that an antibiotic would. With this in mind, the mechanism of action would appear to be similar as would the end result.
Appreciate any thoughts. This is so very confusing.
LT
Posted by davidx (Member # 8326) on :
LT-
I dont know whether it's a herx or not but it might be good to skip next month's dose and give yourself a break. And it could be a mixture of both a herx and am IVIG reaction. My doctor mentioned that some ppl can develop aseptic meningitis (sry if mis-spelled) but I dont remember exactly what the symptoms are (but stiff neck and headaches could be part of it?)
With that said, after my first month of IVIG (140 grams over 5 days) I didn't feel great for the month afterwords. Different symptoms than you but still not well (headaches, etc)
I now get 2 doses every other week and I generally feel fine. ( i have been on this protocol for a number of months).
Also, not to sound too technical, but if the half-life is 40 days, then after 80 days you should have 25% remaining in you so it's possible in theory to still have some of the effects. I read an article where certain antibodies (i believe it was heb b) that were passivley transferred were still detectable after 6 months (if i remember correctly).
I do hope you feel better soon.
-David
Posted by lymetwister (Member # 19590) on :
Thanks David, you are correct in the 25% after 80 days.
I just feel so sick like I have never felt before with all of this. Before it was just symptoms and not a feeling of being sick, now everything is exaggerated and on top of that I feel very very sick.
Before the IVIG, I would Rife and do the Salt/C and I would Herx for a few days and it would go away, but this is constant. I am counting the days to get to the 80 day mark. At 25%, that would be like 30Gm left in me, which I would think would be much more tolerable.
Hard to believe that only my monocytes are elevated and temp are so low grade.
LT
Posted by Buster (Member # 19472) on :
Man that sounds tough.
All the people I know with lyme/co's that are on IVIG are doing it once a month or once every 2 weeks. I just don't really see the reasoning behind flooding yourself with that stuff for a whole week everyday.
Is there a reason why your doctor is doing this?
Posted by Parisa (Member # 10526) on :
Lymetwister,
I think you should look into things that will help you with herx and the toxins that can be released when the bugs are killed off. Pectin, lemon olive oil drink, benadryl, etc. This will pass. As I've said before, the first treatment or so is rough. It gets easier and you should start to see improvement around the third month.
Posted by lymetwister (Member # 19590) on :
Normal protocol calls for a one time loading dose over 4-5 days. This is usually done at the dose prescribed divided by the number of days to be given over.
After that, it is usually given once per month at another specific dose. What I'm hearing from others is that Lyme patients should be given lower doses. This I did not know, nor did the Neuro Doc. apparently.
In other words, if this was being given for other than infection, then I don't think I would be experiencing all of this.
Whats done is done, now I just have to survive each day and let it do whatever it's going to do.
It is very tough and I would imagine many would have jumped off the highest bridge they could find by now.
I'm hanging on and taking lots of klonopin to keep me in check and even with that and now Percocet, it is still difficult, but I will survive, I have no choice.
LT
Posted by Canuck (Member # 21255) on :
I know how you feel. I am actually now on the Vivaglobin weekly, and it's a different dosing for the SQ variety (which is a total pain in the tail) but I think it's something low like 3 g.
Anyways, when I was on monthly IVIG, even with my first dose I never had issues at all, but once I started the subq vivaglobin, I feel much worse, and it's worse than just the 'sick with Lyme' problems.
I can't say that anyone honestly herxes on IVIG/gamma globulin though. It's hard to say but I guess I can see it if it builds up our immune system enough to kill off any bacteria, thus herxing as a result, but I would really make sure that you don't have aseptic meningitis.
For folks like us, it's really common. I know of three that started it and had to stop because of the head/neck issues that were symptoms of aseptic meningitis, and discontinued it for a few months.
Lyme patients should have lower doses, or at least to start very low and work up. That's for days on end? Wow, and a neuro doc prescribed it? Definitely check , and it sounds like you are doing your homework. Normally an immunologist or hematologist would be the best consultant in ordering IVIG BUT of course neurologists are qualified, I just don't think it's an every day thing for them.
My head and neck/shoulders are killing me and they never let up, I'm definitely a mess since starting this ,and I think I have been on the SQ stuff for about four months. I hate to say this but it got worse as time went on , not better.
Hang in there. I think it's so hard having Lyme and dealing with antibioitcs but this on top of it can sometimes add insult to injury..
I will double check my dose to make sure that's right. I know my IV dose was WAY lower than what you are on.
Best of luck
Posted by bettyg (Member # 6147) on :
no personal experience, but reading yours ... meningitis is what i thought too of the neck problems, and has been adrresssed by others above. hang in there hugs/kisses
Posted by davidx (Member # 8326) on :
LT-
I just wanted to say that I don't think there is a set protocol for patients. I have been getting the "loading" dose for many months now but it's split up during the month into every other week so that I don't get 5 days in a row.
However, I do continue to get 140 grams every month and the idea for me is to do this amount for six months and then start scaling back (which is starting now). If I went to one day a month (which is the goal) then I would get just 28 grams but this was too much of a drop all at once.
I do hope you feel better though because we all know how much it stinks to feel lousy. And perhaps you might really consider skipping you dose next month or at least run the idea by your doctor.