Imunovir question - input needed!

[dsdmom]

I just started imunovir yesterday and am having major headaches. Like incapacitating. It feels very muscular - I've had these before especially when I started wellbutrin, which has the known side effect of activating tmj muscles - the headaches were related to muscular tension in the shoulders/back/neck/head. The headache I have now feels the same - I can't imagine how/why imunovir would do this.

I spoke to the distributor @ Rivex Pharma today and he said that headaches were not a common side effect and maybe it was a reaction to whatever the drug is fighting off. I guess some people feel flu-ish (I've had a bit of this but not too bad) and maybe it is manifesting itself in me as a headache?

I guess my question is - does anybody know enough about how imunovir works (I understand that it helps transition function from th2 to th1) of how that could possibly cause these types of headaches? Clearly I went up too quickly on the dose to the full dose and need to back off. NOt taking my 3rd dose today and maybe none tomorrow until I can get this headache under control.

Does anybody have any input on this or experience to share?
Thanks!

 

[cfs since 1998]

Hello,

I bet it is related to some kind of antiviral action, e.g. herx, die off, immune reconstitution, whatever you want to call it. When I started olive leaf extract I got severe headaches, TMJ, and neck/back pain. People who have taken Valcyte reported the same. Is this the first antiviral/immune modulator you have ever taken? I think the herx/die off/whatever reactions tend to be most severe with the first thing you take, whatever that happens to be.

 

[dsdmom]

Thanks for your reply. I am just trying to figure out how to proceed - I seriously can not function with the headaches at this level. So do I get it out of my system and try to start over slowly? Or did you just push through? And how long did yours last?

The only antiviral I ever took was acyclovir this past year - 5 days for shingles, but other than that this is my first immunomodulator. I didn't feel very good on the acyclovir but didn't have headaches and could still function on that stuff. What do you think I should do? And is this the type of thing that charcoal may help? I'm so new at this..

 

[cfs since 1998]

Thanks for your reply. I am just trying to figure out how to proceed - I seriously can not function with the headaches at this level. So do I get it out of my system and try to start over slowly? Or did you just push through? And how long did yours last?

The only antiviral I ever took was acyclovir this past year - 5 days for shingles, but other than that this is my first immunomodulator. I didn't feel very good on the acyclovir but didn't have headaches and could still function on that stuff. What do you think I should do? And is this the type of thing that charcoal may help? I'm so new at this..

Whether to start over and work your way up or just deal with it is a personal decision, if you are working or have to take care of a family I would choose the former. I chose the latter and initially my "herx" lasted about two weeks but then I would raise the dose and it would come back. This cycle repeated for a couple of months.

Perhaps a schedule such as week one 1 tab/day, week two 2 tabs/day, week three 3 tabs/day would be better for you. Thankfully since immunovir is not an antiviral you don't have to worry about resistance. Also most doctors using this have you not take it on weekends. No I do not think charcoal would help.

 

[heapsreal]

hi dsdmom, Can i ask what dosing you are using of imunovir and how are you going on it now, feeling any better??
cheers!!

 

[dsdmom]

Hi heapsreal -
I took a break from the imunovir after talking to Nancy Klimas & my pcp. We decided to try me on LDN for a while to see how I do. Interestingly enough I'm experiencing the same type of headaches on LDN that I had on imunovir so I can only think there is something going on with my immune system that is triggering them? So I'm on a super low dose of LDN (.1mg) but I just started a few days ago. Having headaches but trying to control them with magnesium, riboflavin and tylenol. When I go back to Imunovir (which I plan on doing at some point) I will probably start with 1/4 of a pill once a day and build up from there if I can tolerate it.

 

[heapsreal]

That sounds positive then, herx type reaction, obviously its turning your immune system on. Are u taking ldn for its immune boosting ability or for pain relief?? The good thing about having klimas as your dr is she can do alot of appropriate testing like natural killer cell stuff and see if these meds are effecting nk cells.

cheers!!

 

[dsdmom]

Taking LDN for both immune modulating and pain relief. Nancy wants me to come back in 4-6 months to test NK activity again. And probably cytokines too I imagine. It is good that they will be tracked. LDN is sort of new for her I think so it will be interesting to see what happens with my labs. IF I can tolerate this stuff...trying very hard to work through the headaches though.

 

[maryb]

For me I can tolerate most symptoms but the headaches really floor me.
Raymond Perrin's (osteopath) theory is that headaches are toxins getting delayed in the brain, if you stimulate the lymph system by massage it helps move them on. The first few sessions of massage results in headaches and feeling worse but then improvement should come.
Is it worth considering whether this approach may work, or perhaps something else like acupuncture.