lymetwister
Frequent Contributor (1K+ posts)
Member # 19590
posted
Hey guys, I wound up taking the final dose yesterday despite my reluctancy to do so.
I was in a bad Herx from the IVIG that seemed to be getting better even though I still didn't feel well.
So, I'm 24 hours into dose #5 and I was Herxing yet again today and even into this evening.
What I had done was dose #1,2 & 3 on consecutive days, skipped day 4 and did dose #4 on day 5.
I landed in the ER with bad shortness of breath and chest pain and a low HR 48-51 on the monitor.
The ER wasn't impressed, but I was as my normal HR is 80-90 at rest, I left with elevated monocytes, and my body temp has resumed to normal ever since.
BTW, dose #5 was 5 days after the ER visit and things did calm down. I waited until the last day to do dose #5 as it would have expired had I waited another day.
My Vertigo is better and my anxiety is better and lastly, my headaches are better. None of it is gone by far, but it is more livable and I've been able to get out and run some simple errands, and finally able to take my kids to the park and out to eat.
This is a great improvement for me. On the flip side, I feel sick more than anything and my body is aching bad. My body temp has come up from 96.5 to now 98.6 to 99.3 and I no longer feel chilled. Lastly, my neck gets so freaking tight and achy like it has never been.
I will have to give this a few weeks to see what the overall effect of this first round is doing.
I kind of summed up everything I put in the other posts, but this is a good summation of what I've been experiencing and how I've been feeling.
If I had to guess, I would say the IVIG is trying to fight off the Lyme, or so it would appear and of course, this is my hopes and prayers.
I seem to be more fatigued now than prior to starting the IVIG, yet I manage to stay awake all day. I still wake up with morning anxiety, but it is not as bad as it has been, yet it still wakes me up. My brain fog seems to come and go and my emotions seem to be much more intact.
I hope that covers it all. I will give updates now every few days as I think daily updates would be like looking at a kid every day and not seeing him grow, but if you didn't see him for a few weeks, you would notice differences.
This is what I want to do here.
Catch you all later and hope your all doing well.
LT
Posts: 1227 | From District of Columbia | Registered: Mar 2009
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bettyg
Unregistered
posted
hi lt
wow, you've been suffering big time here but glad you felt good enough to take your kids out, etc. and make some memories.
what is HR? sorry, too many abbreviations, and my neuro lyme brain can't keep up with things.
did you ever get a chance to type up your notes from your personal phone call to willy b? please answer by PM AS TIME PERMITS and you feel up to it ok my friend.
best wishes to you.
are you keeping your typed notes where you post here? if not, print them off now so you can see the pattern of anything occurring ok. hugs/kisses
yes, post only when you notice something different.
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lymeHerx001
Frequent Contributor (1K+ posts)
Member # 6215
posted
glad to hear that your vertigo is better, mine is constantlly there.
Usually it would totally disappear, now my symptoms like to linger!
Posts: 2905 | From New England | Registered: Sep 2004
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ArtistDi
Frequent Contributor (1K+ posts)
Member # 2297
posted
Lymetwister,
I am concerned with what you term a "herx," because you could actually be having an immune reaction to the IVIG. I had a friend who was on high doses of this as well once a week. A new llmd as well as an immunologist tested him with the Cd3 complex which was extremely evelated. This meant it was an immune reaction, ie, like an autoimmune reaction.
My friend had to go off the IVIG as he was not a good candidate for it. You may want to try lower doses, space them out every other week, and infuse much slower with sodium chloride bag drip afterwards.
Are you pretreating with Benadryl, Tylenol?
I would be very cautious, as my own llmd had a huge reaction to IVIG and he had serum sickness. He routinely tests his patients when they have big reactions to it.
Just a heads up.
Posts: 1567 | From Hatfield, MA, USA | Registered: Mar 2002
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lymetwister
Frequent Contributor (1K+ posts)
Member # 19590
posted
HR= heart rate
I did premedicate with both tylenol and benadryl. When I call it a Herx, thats exactly what it is. It goes away in two days. I feel like I'm coming out of it this morning.
When you first start IVIG, the Doctors like to "Load" you up. This is usually done over about 5 days which was the order in my case.
Each dose was 25gm. The first Herx came after the 3rd dose, or should I say during the end of the 3rd dose.
It is definately doing something, as I previously mentioned, and I don't see it as negative.
If you had any other illness even if it was viral and just let it take it's course, you would feel sick with body aches and perhaps fevers.
This seems to be what I'm having.
Like I said, my heart rate which they were calling POTS seems to be coming down. It was 57 this moring sitting and only in the 80's while standing.
While this is still abnormal, it is a big change from 80's sitting and 150 standing.
The low grade temps and elevated monocytes would seem to indicate that my body is fighting the infection.
Like I said, I have to give it a few weeks and perhaps a few treatments over the next few months to see the overall effect. This stuff is not an antibiotic and I know my bacterial load was very high to start with, so it will take some time to get it all down if this is going to work.
LT
Posts: 1227 | From District of Columbia | Registered: Mar 2009
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dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
facinating LT. keep the updates coming.
Posts: 2675 | From ct, usa | Registered: Jan 2004
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posted
I'm really looking forward to hear what you have to say a week or two from now, let everything kinda get back to normal and then recalculate how you are doing...
I know 1 girl that is makes leap and bounds of improvement over the past 6 months with IVIG and abx
Posts: 458 | From Miss | Registered: Mar 2009
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My neuro symptoms have improved to some degree over the past few months since I have been on IVIG so there is hope! I continue to remain positive (most of the time)
I continue to get 5 doses per month (30 grams per dose) but it is spread out over the month instead of 5 days in a row. I am expecting to start tapering down in the next month or two.
Keep us posted.
-David
-------------------- Same nightmare, different day! Posts: 401 | From East Coast | Registered: Nov 2005
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ArtistDi
Frequent Contributor (1K+ posts)
Member # 2297
posted
Lymetwister, I have been on IVIG for two years along with IV Doxy. That is how I have made the progress that I have. IVIG itself, without infection per say, can cause fevers, body aches and nausea. This I know from my own immunologist and hematologist.
I know another patient who has huge immunodeficiency, and has been on IVIG for 10 years. She can still have a period of fatigue or sickness from it.
If it only lasts for two days, it may well be killing infection. When the body aches and you have flu-like symptoms for weeks, then it is an immune reaction.
I don't take high doses and only twice a month. It has helped tremendously with fatigue, brain fog, gut and muscle weakness, along with less noticeable tremor.
Good luck to you.
Posts: 1567 | From Hatfield, MA, USA | Registered: Mar 2002
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posted
Hi, Just as a side note, some of the IVIG products are not compatible with normal saline, Gamunex and Gammangard for example, so if you infuse normal saline after the IVIG, use D5W first to flush the line clear of IVIG. Grace
Posts: 113 | Registered: Jun 2002
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