This is topic New Labs, ++ Epstein Barr Virus. Just got an Explanation as to what IVIG is doing in forum Medical Questions at LymeNet Flash.


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Posted by lymetwister (Member # 19590) on :
 
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 :-)

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[ 08-27-2009, 09:58 PM: Message edited by: lymetwister ]
 
Posted by UnexpectedIlls (Member # 15144) on :
 
I ALWAYS have a high white blood cell count.... dont know why???
 
Posted by seekhelp (Member # 15067) on :
 
I personally don't think any of those results are that meaninful based on my knowledge.
 
Posted by lymetwister (Member # 19590) on :
 
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
 
Posted by Pinelady (Member # 18524) on :
 
Sounds great. I hope you get rid of both. Did she say no antivirals? Let the IviG do it's thing?
 
Posted by lymetwister (Member # 19590) on :
 
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
 
Posted by kitty9309 (Member # 19945) on :
 
Here is a good link to explain a cytokine storm:

http://en.wikipedia.org/wiki/Cytokine_storm
 
Posted by bettyg (Member # 6147) on :
 
thx for update; best wishes twister [Smile] xoxox
 
Posted by timaca (Member # 6911) on :
 
You likely have a chronic active EBV infection. You should also check for HHV-6 and enterovirus infection.

See: www.enterovirusfoundation.org
www.hhv-6foundation.org
and
http://hhv6foundation.proboards.com/index.cgi?board=testing&action=display&thread=182
You will need to sign in as a member to read the last post.

Best, Timaca
 
Posted by greenbow (Member # 21463) on :
 
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.
 
Posted by Buster (Member # 19472) on :
 
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
 
Posted by seekhelp (Member # 15067) on :
 
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.
 
Posted by davidx (Member # 8326) on :
 
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.
 
Posted by lymetwister (Member # 19590) on :
 
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
 
Posted by disturbedme (Member # 12346) on :
 
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.
 
Posted by Beautiful Disaster (Member # 21882) on :
 
That's really interesting. And I understood it! lol.
 


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