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bad reaction to Famvir(famciclovir)

V

Viktor11

Messages
25
i-lava-u said:
I think I started antivirals shortly after this test (valacyclovir then acyclovir), I just copied and pasted it from my medical record,hopefully it makes sense! there was not a reference range attached on this one:

Lab/X-ray Results
EBV panel with titers05/02/2016
Dx: (B27.09) Gammaherpesviral mononucleosis with other complications
Files:

Performed:


WBC count with manual differential05/02/2016
Dx: (B27.09) Gammaherpesviral mononucleosis with other complications
Files:

Performed:


Notes on results:
Date 'performed' = date drawn.
"Peripheral smear within normal limits."

EBV VCA IgM < 36.0
Early Antigen IgG 64.3
VCA IgG 157
Nuclear antigen IgG < 18.0

---------------------------------------------------------

Here is my most recent test. They did not test early antigen on this one. I started taking famvir after this test.

EBV NUCLEAR IgG SCREEN
11/01/2017​
Files:

Performed
EBV Nuclear IgG Interpretation
Positive (ref: NEG) Final results Abnormal
Comments:​
See Note: Final results
(NOTE)
INTERPRETIVE TEXT FOR EBV STUDIES:

- -

EBV Interpretation
NEG: <=0.8 AI
POS: >=1.1 AI
EQ: 0.9-1.0 AI

- -

For specimens that are equivocal or negative with high
clinical suspicion, the patient can be re-collected for
repeat testing in one to three weeks.

The magnitude of the result measured above the cut-off is
not indicative of the total amount of antibodies detected.
Performed using BioPlex 2200 multiplex bead technology.

- -

See EBV Interpretative Guide in Laboratory Test Directory:


Performed at Intermountain Central Laboratory, Murray, Utah
EBV Nuclear IgG EBV
>8.0 AI (ref: <0.9) Final results High
EBV Nuclear IgG


------------------------------------------

EBV ANTI-VCA IgG
11/01/2017​
Files:

Performed:EBV Anti VCA IgG Interpretation
Positive (ref: NEG) Final results Abnormal
Performed at Intermountain Central Laboratory, Murray, Utah

EBV Anti VCA IgG
>8.0 AI (ref: <0.9) Final results High
EBV Anti VCA IgG

Notes on results:

--------------------------------------
Lab/X-ray Results
EBV ANTI-VCA IgM
11/01/2017​
Files:

Performed:
EBV Anti VCA IgM Interpretation
Negative (ref: NEG) Final results
Performed at Intermountain Central Laboratory, Murray, Utah

EBV Anti VCA IgM
<0.2 AI (ref: <0.9) Final results
EBV Anti VCA IgM
Click to expand...

It seems like different labs have different reference intervals so it is so difficult to compare 🧐, but thank you for providing your results.
Anna
 
i-lava-u

i-lava-u

Senior Member
Messages
691
Location
Utah, USA
I am ssoooo not a computer/technology person or else I am sure I could find the other reference range online. Other members here are a lot better at that than me. ;)

Good luck with your antivirals! I hope you find some improvements from them :hug:
 
i-lava-u

i-lava-u

Senior Member
Messages
691
Location
Utah, USA
Viktor11 said:
It seems like different labs have different reference intervals so it is so difficult to compare
Click to expand...

I found the reference range:

Ebv Ab Vca, Igm 0.0-35.9
Ebv Early Antigen Ab, Igg 0.0-8.9
Ebv Ab Vca, Igg 0.0-17.9
Ebv Nuclear Antigen Ab, Igg 0.0-17.9

(2016 results, that I previously posted)
EBV VCA IgM < 36.0
Early Antigen IgG 64.3
VCA IgG 157
Nuclear antigen IgG < 18.0

I found another test from 05/01/2015
EBV VCA IgM < 36
Early Antigen IgG 62.3
VCA IgG 169
Nuclear antigen IgG < 18

-------------
And another one from 07/18/2011
EBV AB VCA, IGG >8.0 AI (0.0-0.8)
EBV AB VCA, IGM <0.2 AI (0.0-0.8)
EBV EARLY ANTIGEN AB, IGG 7.8 (0.0-0.8)
EBV NUCLEAR ANTIGEN AB, IGG 7.3 (0.0-0.8)
---------------------
One from 08/11/2008
EBV Ab to VCA, IgG and IgM
EBV ab to Viral Capsid Ag, IgG 259 (<18.0 U/mL reference range)

EBV Ab to Viral Capsid Ag, IgM <10.0 (<36.0 U/mL reference range)
------------------------

I'm sure I have more, just didn't come across them. Just giving a general idea ;)
 
Zebra

Zebra

Senior Member
Messages
866
Location
Northern California
Hi Viktor!

I had/have very similar symptoms when starting Famvir and every time I increase my dosage.

In addition to that agitated state you describe, I also experience difficulty falling asleep until my body gets used to the new dose.
My coping mechanisms are:
  • Reducing or eliminating caffeine
  • Deep breathing (especially during palpitations)
  • Magnesium (capsule or powder drink form)
  • And if all that fails I pull out the lorazepam. I only take 0.5mg, but it helps calm down that feeling of being overstimulated. And I only take it when I feel like I'm gonna jump out of my skin, as this type of drug is highly addictive.
I know that another member advised you to increase your dose as quickly as possible, but my CFS docs have always advised me to "go low and slow".

I am currently taking 250mg twice a day, and next step is 375 mg twice a day.

Hang in there, Viktor. I hope the Famvir will work for you!

Best wishes,
Zebra
 
V

Viktor11

Messages
25
Zebra said:
Hi Viktor!

I had/have very similar symptoms when starting Famvir and every time I increase my dosage.

In addition to that agitated state you describe, I also experience difficulty falling asleep until my body gets used to the new dose.
My coping mechanisms are:
  • Reducing or eliminating caffeine
  • Deep breathing (especially during palpitations)
  • Magnesium (capsule or powder drink form)
  • And if all that fails I pull out the lorazepam. I only take 0.5mg, but it helps calm down that feeling of being overstimulated. And I only take it when I feel like I'm gonna jump out of my skin, as this type of drug is highly addictive.
I know that another member advised you to increase your dose as quickly as possible, but my CFS docs have always advised me to "go low and slow".

I am currently taking 250mg twice a day, and next step is 375 mg twice a day.

Hang in there, Viktor. I hope the Famvir will work for you!

Best wishes,
Zebra
Click to expand...

Thank you for your advice☺️. Which ME-docs have you visited?
 
Zebra

Zebra

Senior Member
Messages
866
Location
Northern California
Hi, Viktor!
I apologize if you have been waiting for a response. I've been offline for about two weeks, due to illness and medical appointments.
My first CFS doc was a brillant rheumatologist, in private practice, who strongly believed that many autoimmune diseases were sparked by a pathogen, just like ME/CFS. His name is Dr. Michael Powell and I had to stop seeing him when he moved his niche practice to Sierra foothills in CA. It was just too far to travel, but I would like to renew care with him if/when I am feeling stronger. He was easy to talk to, no question was off limits, and he was a trusted guide in navigating, and treating, whatever might be contributing to your individual disease process. Ah, man. Now I miss him! ;)
For the past 3 years I have been a patient at Stanford CFS Clinic. I saw a PA for the first 1.5 years and an MD for the past 1.5 years. I thought Stanford was going to be like "the promised land" for those with ME/CFS. Ha! Total cookie cutter approach to all things Herpes Virus and resulting inflammation. That's where their clinical treatment begins and ends. So, for now I'm plugging away on the Famvir. Next step is to add low dose Naltrexone, which I'm on the fence about.
All the best to you!
Zebra
 
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