Topic: Sickest I've been since IVIG. Need some input or advice
lymetwister
Frequent Contributor (1K+ posts)
Member # 19590
posted
I'm 44 days into the IVIG, which to remind some of you has a half life of 40 days. The 125gm I got should be around 62.5gm still in me now.
Here are my current symptoms: Body temp normal with very low grade temps 99.2 or so, But I am freezing cold and covered with blankets. I am aching across the shoulder blades and down the spine. Neck is stiff at times, Tremors in the head, neck and shoulders (perhaps from being so tense), Anxiety out the ying yang at times, Crying spells that come out of nowhere, and an overall feeling that I'm dying.
In addition, the Vertigo still comes and goes. Nauseated at different times during the day. My head does not feel right, almost like I'm gonna have a seizure at times. Something not firing right in the brain. My mind is clear however when I'm not freaking out. Overall, I just feel sick !
I'm grunting and groaning, but nothing hurts that bad to be doing so, I wonder if it's just the overall combination of symptoms that makes me grunt and groan.
Does this sound like IVIG at work to you guys or have I just gotten 100% worse since getting it by coincidence ?
LT
Posts: 1227 | From District of Columbia | Registered: Mar 2009
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losferwrds
Unregistered
posted
So based on this and your other posts
1. The Lumbar Puncture, that is now OK, nothing needs to be done despite finding of a bacterial or viral problem, was there any further information given or any more follow ups?
2. The Parasites, has any of labs gotten back to with any kind of explanation? I know you sent them to more than one place over the past several months and hopkins just got a sample from you over the weekend, did they give you any kind of turn around time? Are they even examining it or did they take in another room and dump it in a bio hazard bag?
3. I am still not sure how the IVIG can help you without ABX, intially when getting bitten by a tick people essentially have a perfectly working immune system, and people develop essentially what you are experiencing, the ensephalitis, malaise, pains, neuro etc sorta like a freshly infected person, except you got huge bacterial load at this point so you are like a person that just got infected by a super tik at this point and are getting wacked IMO. I am still unclear why they don't have you on any ABX. If all it takes is a strong immune system wouldn't we just fight the intitial bite off without any medical intervention and only people that were initially immuno compromised develope lyme?
Maybe I just don't grasp what IVIG does, but I was under the impression its basically helps to repair a compromised immunesystem.
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
I don't totally understand the IVIG either. and what losferwrds said makes sense to me. But maybe it has kicked in your immune system and you are having a big gigantic herxheimer. That would be what you are hoping for anyway.
If this is a negative reaction to the IVIG, couldn't they give you a saline drip to wash this stuff out of your body sooner? Or maybe you can drink enough to wash it out sooner.
It does seem that if it is used simply to correct your immune system that you would still need some antibiotics, and that they would be way more effective if this is indeed the purpose of IVIG. Or do you add the antibiotics after you correct the immune system?
Posts: 4035 | From Mississippi | Registered: Jul 2008
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lymetwister
Frequent Contributor (1K+ posts)
Member # 19590
posted
Igg is elevated in both Plasma and CSF, just got this back today, however IVIG can also cause this, so ????
The parasites are in the lab at Hopkins and with the health department, so results are pending.
I don't know how the IVIG can help without abx either, but all I know is that most of these exacerbation came on after and during the infusions. I was in the ER after the 4th dose with crazy air hunger and my HR was 48 on the monitor. 48 is unheard of with me because I have POTS, or so they say. My HR runs in the 80's at rest.
Than I had the elevated monocytes and return of my body temp. to normal from 96.5
This is all post IVIG. Some of it good, but most of what I put in this post is terrible. I feel so sick in every which way.
Time will make sense of it all. When I get closer to the 70 day mark or so, I think I will know better what is going on. Then I go back to Salt/C and Rife if I'm still alive. I was making progress on these therapies.
I might try abx too, but right now I just have to sit and wait for time to pass. Too much going on.
Have appt. with Neuro tomorrow and hopefully will get some better answers but most likely will not.
I know I'm the only one on here who ever had this with IVIG, but I assure you, I don't make any of this up and again, unless everything above is pure coincidence, then the IVIG is the culprit. In the end, my own body might be fighting this crap off, if not, then I sure stirred up the pot once again. I'm praying for the first.
LT
Posts: 1227 | From District of Columbia | Registered: Mar 2009
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posted
I said this once before and I will say it again.
At this point it doesn't matter if the IV IgG caused a worsening of symptoms or not.
Based on the spinal tap you obviously have either encephalitis or meningitis -- this needs to be treated ASAP. Highly unlikely that it will improve on its own -- at least not for many months. Odds are that it could actually get worse instead of getting better.
Antibiotics are one of the few things that can actually get into the brain to reduce the inflammation. Antioxidants will help but won't do it alone. Herbs might help -- but would require unreal doses and someone who had vast experience.
In my opinion salt/C and Rife could actually make you much sicker at this point.
When reading about treatment for encephalitis and/or meningitis one of the things always listed is to monitor the patients electrolytes. Not exactly sure of the mechanisms involved, but do know that a brain infection can interfere with balance of various electrolytes.
At different points during hubby's 30 day hospitalization in 2007 he required IV's of magnesium and IV potassium. This was in addition to the normal IV saline.
For some symptom relief you could try adding a small amount of salt substitute (made with potassium) to a small amount of water. Sometimes this will stop hubby's shaking. He takes lots of extra salt to try to keep his sodium in the normal range and sometimes his potassium gets out of balance even though he drinks V8 and eats lots of bananas etc for the potassium.
E-lyte solution did not work for him in the past -- but he had gastritis at the time.
This is not medical advice, just my opinion based on hubby's experiences.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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