Topic: New Labs, ++ Epstein Barr Virus. Just got an Explanation as to what IVIG is doing
lymetwister
Frequent Contributor (1K+ posts)
Member # 19590
posted
This explains the fatigue and body aches and perhaps the low grade fever. But it's all related to the IVIG as the incubation period is 4-6 weeks. Certainly didn't get it from intimate contact :-)
[ 08-27-2009, 09:58 PM: Message edited by: lymetwister ]
Posts: 1227 | From District of Columbia | Registered: Mar 2009
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posted
I ALWAYS have a high white blood cell count.... dont know why???
-------------------- "You'll be surprised to know how far you can go from the point you thought it was the end" Posts: 946 | From Massachusetts | Registered: Apr 2008
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seekhelp
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posted
I personally don't think any of those results are that meaninful based on my knowledge.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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lymetwister
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Member # 19590
posted
Just got an explanation from a Clin Spec at Hopkins as to what is perhaps going on with me.
She works Oncology, but has researched and written on IVIG. She says it sounds like what I'm having is a Cytokine Storm. She has seen this in her cancer patients who appear septic after receiving biological agents and says the same thing can happen with IVIG when used to treat Lyme.
What she said is happening is that my immune system is once again activated to where it should be and because the bacteria with Lyme release Neurotoxins, I'm experiencing this and the Cytokine effect, which is a double whammy to the brain.
The windows I get where I start to feel normal are caused from ridding toxins and a reduction of the Cytokine Storm happening together, kind of like an luner eclipse. But once both start up again, this is why my symptoms flare.
Now, I have a White Count and a High Neutrophil count and pos. for Epstein Barr Virus. She says the activated immune system is going after the once dormant infection I was exposed to when I was younger. In other words, it's destroying everything in it's path.
She has been in the business over 35 years and holds a Masters Degree in Nursing and is mostly into research these days, so I put alot of faith into what she is saying.
It all sounds good to me, what do you think ?
LT
Posts: 1227 | From District of Columbia | Registered: Mar 2009
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Pinelady
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posted
Sounds great. I hope you get rid of both. Did she say no antivirals? Let the IviG do it's thing?
-------------------- 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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lymetwister
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posted
She said, she wouldn't take anything until symptoms start to diminish. Anything else could make symptoms worse.
I guess I found the quick way to beat this, or lets say I'm hoping and praying that is whats going on.
I feel like I am Jesus Christ res-erected and taking in everyone's pain for their sins. I don't know how much more a man could take then what I've been going through. It's a good thing I have a high pain threshold or I might not be sitting here typing this.
For those of you that are religious, please don't take my example to heart, I mean no disrespect to Jesus Christ, but I don't know how else to describe what I've been going through.
Off to bed.....
LT
Posts: 1227 | From District of Columbia | Registered: Mar 2009
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before i found out my problem... i always had high neutrophils and the docs kept saying oh, that is NORMAL for some people. also, i have high EBV titers and the docs said 98% if the pop. had EBV in their blood.
Posts: 94 | From ut | Registered: Jul 2009
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Lymetwister, I don't know if the EBV should be of great concern. Every person I know that has tested for it... has it including myself.
I'm speaking about IgG, not IgM. Looks like your immune system is turned up for sure. Is it turned up in a good way or not, I don't know? A functioning immune system is good but one that is going crazy constantly is not good and could cause damage
Posts: 458 | From Miss | Registered: Mar 2009
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
None of the abnormalities are really that far from range and the EBV numbers probably mirror mine. Tough to say if EBV is chronic or not. I'd try anti-virials when up to it IF you can get a doc to Rx.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
I just wanted to mention that the EBV numbers may be misleading.
The reason is that when you get immunoglobulins from IVIG you are getting all sorts of antibodies which are passively transferred.
I am currently on IVIG and have tested positive for different antibodies that I had never tested positive for previously (I also had never been exposed to the antigens).
With that said, there may not be a way to know for sure but I just wanted to throw out a different perspective.
-------------------- Same nightmare, different day! Posts: 401 | From East Coast | Registered: Nov 2005
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lymetwister
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posted
I sure hope I don't have it. This would just be another wrench in this whole mess.
You might be right David. I have the symptoms except for the excessive sleep even though I do feel worn out and exhausted.
LT
Posts: 1227 | From District of Columbia | Registered: Mar 2009
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disturbedme
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Member # 12346
posted
I wouldn't worry that much.... I've had a low/dangerously low white blood cell and neutrophil count for 12+ years. Not once since I can remember have they ever been in the normal range.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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That's really interesting. And I understood it! lol.
-------------------- ---Beautiful Disaster--- IgeneX WB: IgM: 18+, 31+, 41+, 58+, IgG: 31++, 39 IND, 41++, 31kda Epitope Test: Positive Labcorp: IgM: 23+, 41+ No LLMD due to money since Sept 2008. Was on Doxy, I.V. Rocephin (30 days), Flagyl. Also dx with Bartonella. Posts: 139 | From United States, East Coast-ish | Registered: Aug 2009
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