Topic: Neurological symptoms getting worse.. What do I do ? Terrible Head Pain & Confusion
lymetwister
Frequent Contributor (1K+ posts)
Member # 19590
posted
Please folks, I really need your opinions here:
I can only say that it appears that ever since I got the IVIG which has been about 33 days, I have been way worse and getting worse.
I don't know whether to start back on any other treatment because I'm not sure if I'm Herxing or not.
Please tell me what you think. I really need some opinions here.
Here are the facts: My body temp came up to normal from 96.5 after the IVIG and low grade temps late in the day as well. Monocytes were elevated with follow up blood work too.
Emotionally, I have been sobbing and my anxiety has been way worse than ever.
Neurologically, I have been getting migraines and other pains and pressure in my head like I've never had. I feel confused even though I can hold a conversation. I've needed percocet to deal with some of this pain and I've never needed any.
My neck gets very stiff like never before. Vertigo is still there but has gotten a bit better.
My LP results are still pending.
Remember the IVIG is the good stuff to not only boost my immune system, but to also fight off infection similar to an antibiotic. It stays actively working for 80 days or more from the time of infusion. I am only 33 or so days into my infusion, so I won't know if this is just one big Herx or not until I get past the 40 day mark and some of the IVIG leaves my system.
I did some Salt/C last week for a few days and my emotions were all over the place. So, I stopped and I'm still emotional, just not as much.
Bottom line is that all of the above complaints were not present prior to the IVIG, at least no where near as severe and debilitating as they are now.
Please just give me your opinions if you think this is just one gigantic Herx or if this is disease progression, or just stirring up an already bad infection.
I have no idea where to go from here. I feel like I should wait all of this out until I get to about the 65 day mark or so and than I'll know what is what.
I seem to be the only one who has gotten IVIG and got so bad so quick, but I also got a hefty dose 125gm, which seems to be higher than those of you that have had it. On top of that, I know I had this as bad as one could have it before I even started treating, at least thats what my LLMD said.
I really need some direction here. Please give me your thoughts. If this settles down after the 65 day mark or so and I improve than I'll say it was worth it, but if not, I feel like I may be losing the battle in a big way.
LT
Posts: 1227 | From District of Columbia | Registered: Mar 2009
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
Wow I don't know a thing about the IVIG except what
I have read. It sounds like a whopping big herx.
I hope you get that rainbow soon. Prayers.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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Lauralyme
Frequent Contributor (1K+ posts)
Member # 15021
posted
I agree with Pinelady......sounds like a mega Herxorama.
Can you maximize detoxing......such as coffee enemas and exercise if you can?
I can appreciate how frightful this feeling is for you. Hope you feel better soon.
-------------------- Fall down seven times, get up eight ~Japanese proverb Posts: 1146 | From west coast | Registered: Mar 2008
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posted
I dont know anything about the IVIG either but it does sound like a herx or reaction
they also have a transdermal magnesium oil that you can put right on your neck
to stablalize emotions, maybe something for adrenal support or an accupuncture treatment or b12 shot There is also cranial sacral therapists that take pressure off the skull and head with gentle touch, to me that works really good
I too hope you feel better soon!
Posts: 187 | From FL | Registered: Nov 2007
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Since it is not know exactly how IVIG works it is definitely hard to tell what you are experiencing and why. If the antibodies you received are fighting off the lyme infection or somehow altering you immune system (similar to steroids) then what you could be experiencing might definitely be a herx.
I received 140 grams my first time and had really bad headaches off and on for a month or so. So when you describe the pains in your head part of me thinks that it could just be a side effect of the IVIG.
When do you get the LP results back?
Logic tells me that it would be hard to believe your disease has just suddenly gotten worse so I really don't think this is the case. So the million dollar question is whether this is a herx, a reaction to IVIG, or perhaps a combo?
Based upon my experience with IVIG and what you have written, I am leaning towards it being more of a reaction to IVIG rather than a full herx. But I think only time will tell so try to hang in there. Whether it's a herx or a reaction, the symptoms should start to settle down soon I hope.
-David
-------------------- Same nightmare, different day! Posts: 401 | From East Coast | Registered: Nov 2005
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lymetwister
Frequent Contributor (1K+ posts)
Member # 19590
posted
Thanks everyone,
David, I tend to agree that this is definitely a reaction, I just can't say for sure if it's a Herx or not. I would think so as it does fit the definition.
More of the same this morning, very very scary to say the least.
LT
Posts: 1227 | From District of Columbia | Registered: Mar 2009
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