Gingergrrl's Journey with Famvir

[SOC]

I never thought "less", but I did feel curiosity and empathy. Wow, you're making me think tonight lol.

Curiosity and empathy are good. That's no reason to think people using wheelchairs should be ashamed. Perhaps you need to think about treating yourself with as much kindness and concern as you do other disabled people.

While in the chair, I do notice that people don't speak to me - they speak to the person pushing the chair.

That's partly my fault, because I'm in a pretty weak and vulnerable state while being pushed, so it's easier to just sit back and let the pusher do the work - regardless of whether that work is conversation, navigation, or pushing.

I much prefer power chairs or carts when I can get them. Being pushed around, with little control over where you go, which way you're facing, and so on can be somewhat depersonalizing.

 

[NK17]

Just a cautionary note, in case you don't already know -- the arm exercise necessary to push oneself in a wheelchair can be as bad or worse for a PWME than slow walking. Manual wheelchairing can be very aerobic. Great for people with lower body paralysis, really bad for PWME.

Thanks for the cautionary note @SOC, I highly trust your opinions .

 

[Gingergrrl]

@Rrrr I am tagging you here because @Sushi alerted me that you posted the following in another thread:

Then, about 1 month after the family gathering i switched from the generic version of famvir to the brand name version and BAM! suddenly i'm doing much much better. i had heard from others that the generic vs the brand name of famvir made a difference to them. and i can say that that is surely true for me, too.

@Rrrr Can you let me know what you noticed different with the brand name version of Famvir versus the generic? You said you were doing much better and I was wondering in what ways? Also, how long did you take Famvir before you made the switch and what dose were you taking? And last question, were you taking it mainly for active EBV or for other viruses? Any info would be greatly appreciated!!!

 

[Gingergrrl]

I also wanted to thank everyone (@Sushi, @SOC, @NK17, @AndyPandy & @SDSue) for all the terrific feedback re: wheelchairs & handicapped parking placards and I really appreciate it. I was at a family event today and extremely tired right now and will figure out tomorrow what is the best way to link all the wheelchair info into another thread so we can keep discussing it. I didn't want anyone to think I was ignoring the feedback and it is very helpful and gives me a lot to think about.

 

[Gingergrrl]

Famvir Day Five (worst day so far )

Yesterday I went to a family event to celebrate the belated b-days of my mom & niece. It was at their house and all I did was sit in the car, walk a few steps, and sit again while they opened gifts & we had dinner. My HR was never high and I felt okay. I was very happy to be able to go and felt good about it afterward.

However, today I feel incredibly sick as if I have a flu or minor version of mono. I have headache, nausea, extremely severe fatigue, muscle pain, shortness of breath, and I am freezing to the core (but no fever and I literally never get fever.) At first I thought I over-taxed myself yesterday but then started to remember that Dr. K told me that sometimes when you start Famvir, you feel sicker for the first month before you feel better.

If that is the case and I am sicker today b/c the Famvir is actually working to stop the virus from replicating, then I do not mind. I communicated w/my Dr by e-mail yesterday re: the headaches & nerve pain and he said headaches are very common side effect from Famvir and asked me some questions re: the nerve pain (if only on one side of body, what is my exact dosage, etc.) He wants to monitor the first 2-3 wks before we increase the dose and I feel very blessed that he is following me so closely.

I am wondering from those of you who took Famvir (or other anti-virals) did you feel sicker during the first month and is this normal and it will go away? How can you distinguish the difference between a crash and the anti-viral working? I really do not think I over-did it yesterday and have had days where I've done far more than yesterday and felt okay.

The Vit B-12 shots & methyl-folate have not arrived yet (so symptoms not due to those) and I am certain it is not from the Epicor which seems to be pretty benign.

Thanks for any advice or feedback. I love all you guys and you keep me going on days like this

 

[Dr.Patient]

I think it's unlikely from the famvir. It's possibly due to the cumulative effects of the exertions for the last week or two. Remember, the fatigue can and will accumulate for 2 weeks, and then show up suddenly one day.

 

[Little Bluestem]

@Gingergrrl, An anaerobic threshhold test (also called lactic acid test) is less stressful than a CPET. You can get it at a rehabilitation or sports therapy facility. You should probably check with Dr. K and your cardiologists before doing one.

 

[Gingergrrl]

I think it's unlikely from the famvir. It's possibly due to the cumulative effects of the exertions for the last week or two. Remember, the fatigue can and will accumulate for 2 weeks, and then show up suddenly one day.

@Dr.Patient I was curious why you think it is unlikely to be from Famvir? I am not saying you are wrong but would love to hear your thoughts on it. My Dr said I may feel sick/worse for the first month before feeling better and I am trying to figure out if my current symptoms are some kind of delayed PEM reaction (like you said) vs. from Famvir. The reason I am leaning toward Famvir is b/c I've had almost a non-stop headache and pain in my face, jaw, neck, ears, etc, which is totally new for me and not something I have experienced prior to Famvir (with the exception that Florinef at a higher dose gave me a headache but less severe and I went back to lower dose several days ago.)

@Gingergrrl, An anaerobic threshhold test (also called lactic acid test) is less stressful than a CPET. You can get it at a rehabilitation or sports therapy facility. You should probably check with Dr. K and your cardiologists before doing one.

@Little Bluestem Thank you and I have never heard of this test separate from the CPET. I will Google it and also ask my Drs about it. Do you know though since I take a beta blocker, would this affect the test? I am assuming someone on a BB would have to not take it that day for the results to be accurate?

 

[Little Bluestem]

@Little Bluestem Thank you and I have never heard of this test separate from the CPET. I will Google it and also ask my Drs about it. Do you know though since I take a beta blocker, would this affect the test? I am assuming someone on a BB would have to not take it that day for the results to be accurate?

I have not idea how a beta blocker would affect this test. That is why I said you should ask your cardiologist.
I am assuming that you want to know what your anaerobic threshhold is while you are on the BB, since you will generally be taking it. A question for your cardiologist.

 

[taniaaust1]

Just a cautionary note, in case you don't already know -- the arm exercise necessary to push oneself in a wheelchair can be as bad or worse for a PWME than slow walking. Manual wheelchairing can be very aerobic. Great for people with lower body paralysis, really bad for PWME.

I second this. Pushing myself in my wheelchair extremely quickly turns into like aerobic exercise for me. I cant push it more really then one side of a very small room to the other (i mean like a bedroom). It just isnt suitable for us to be pushing our own manual wheelchairs.

@NK17
.......................

Gingergrrl , you really should get the thing you need so you can use disabled parking spaces. You are just as needing one of those as the elderly, maybe more.

I dont know why we do it but I think ME people play down our illness a lot.

 

[taniaaust1]

Given the option of sitting at home vs going out in a chair, I'm slowly learning to opt for the chair. And I hate it each and every time lol.

It can take a lot of time but you will get used to it. It me many many years till I could bring myself to admit that I was going to have to try to get a wheelchair, it was such an embarrassing thought for me to have to use one. I have no embarrassment over this nowdays.

 

[Iquitos]

I second this. Pushing myself in my wheelchair extremely quickly turns into like aerobic exercise for me. I cant push it more really then one side of a very small room to the other (i mean like a bedroom). It just isnt suitable for us to be pushing our own manual wheelchairs.

@NK17
.......................

Gingergrrl , you really should get the thing you need so you can use disabled parking spaces. You are just as needing one of those as the elderly, maybe more.

I dont know why we do it but I think ME people play down our illness a lot.

It's harder to stand up for yourself when so many people, who OUGHT to know better, doubt us. Thanks to the CDC's 30-year propaganda campaign against us.

 

[Dr.Patient]

@Dr.Patient I was curious why you think it is unlikely to be from Famvir? I am not saying you are wrong but would love to hear your thoughts on it. My Dr said I may feel sick/worse for the first month before feeling better and I am trying to figure out if my current symptoms are some kind of delayed PEM reaction (like you said) vs. from Famvir. The reason I am leaning toward Famvir is b/c I've had almost a non-stop headache and pain in my face, jaw, neck, ears, etc, which is totally new for me and not something I have experienced prior to Famvir (with the exception that Florinef at a higher dose gave me a headache but less severe and I went back to lower dose several days ago.)

You have been riding in a car for several hours in the last few weeks. That exertion will bring on these symptoms, sometimes the delay is several weeks. It will also bring on new symptoms, like your headache and facial pain. The same thing happened to me, and I was not on any antivirals then. Even riding to the airport for a flight will bring on these symptoms. That happened to me too. People are initially not open to accepting this.

My suggestion is that don't do a trip, unless ABSOLUTELY necessary, and then too, fly rather than ride.

This getting worse before getting better with famvir IMO, means having side effects like nausea, abdominal pain, etc, that get better after a few days. I don't think that means your fatigue will get extremely severe.

Fatigue WILL get extremely severe with the physical exertions your body went through.

 

[Gingergrrl]

It's harder to stand up for yourself when so many people, who OUGHT to know better, doubt us. Thanks to the CDC's 30-year propaganda campaign against us.

@Iquitos I totally understand what you are saying and have had times where it has been hard to advocate for myself (and advocacy for patients was actually a part of my profession and something I am very good at when I am feeling better!) Re: the wheelchair and parking placard, I really had not thought about these before this week and still need to sort out my own thoughts about it. I am fully on board with the parking placard idea but still need to figure out if I really need a wheelchair (except for places like an airport where it would be a necessity.)

@Dr.Patient

You have been riding in a car for several hours in the last few weeks. That exertion will bring on these symptoms, sometimes the delay is several weeks. It will also bring on new symptoms, like your headache and facial pain. The same thing happened to me, and I was not on any antivirals then. Even riding to the airport for a flight will bring on these symptoms. That happened to me too. People are initially not open to accepting this.

I fully agree that the trip could have brought on delayed PEM but in my case, I have never in my life had headaches or facial pain as a part of PEM. My Dr. responded to my e-mail today and said that he thinks the headaches & facial pain are from the Famvir and has seen it before. He said we could lower the dose but to wait and re-evaluate on Fri. I have no intention of lowering the dose and am determined to stick it out. For whatever reason, I am not having the headache/facial pain today (after two straight days of misery ) and hoping it may be a transient side effect of Famvir (or maybe the Famvir is working on viruses in other nerves today?-- that last part is my own comment and not something my Dr said.)

My suggestion is that don't do a trip, unless ABSOLUTELY necessary, and then too, fly rather than ride.

Believe me, I have no intention of doing any kind of trip (car, plane, or anything) for a LONG time. The two trips up to OMI were absolutely essential for my treatment and well-worth it for me.

This getting worse before getting better with famvir IMO, means having side effects like nausea, abdominal pain, etc, that get better after a few days. I don't think that means your fatigue will get extremely severe.

My Dr. said that some people can feel sicker the first month on an anti-viral so I tend to think what I experienced was a combination of both PEM and the anti-viral. I don't want you to think I am in denial re: PEM and am the first person to tell PWC's NOT to do any kind of exercise or exertion, etc (as you saw in that other thread where I tagged you!) I am still learning as I go and taking in all the feedback and trying to incorporate it. I really appreciate your feedback very much.

 

[Dr.Patient]

Ok, let's wait and see, hopefully you'll get better soon!

 

[Gingergrrl]

@Dr.Patient Thank you so much and I hope so, too. I know only certain PWC's respond to the anti-virals and there is no guarantee but I am hoping and praying to be in that group.

 

[Dr.Patient]

@Dr.Patient Thank you so much and I hope so, too. I know only certain PWC's respond to the anti-virals and there is no guarantee but I am hoping and praying to be in that group.

There will be some definite improvement for sure, because we all harbor viruses, and these viruses cause fatigue, and suppressing them will definitely help!

 

[taniaaust1]

I am fully on board with the parking placard idea but still need to figure out if I really need a wheelchair (except for places like an airport where it would be a necessity.)

Easy way to figure it out is to just ask yourself "Are I or have I restricted things I would actually be doing if I had a wheelchair?" eg an outting missed with hubby or whatever.

 

[Gingergrrl]

There will be some definite improvement for sure, because we all harbor viruses, and these viruses cause fatigue, and suppressing them will definitely help!

@Dr.Patient Thank you and that was very reassuring to me. My best hope is that the Famvir not only helps the fatigue but also all the autonomic problems that I've been having.

Easy way to figure it out is to just ask yourself "Are I or have I restricted things I would actually be doing if I had a wheelchair?" eg an outting missed with hubby or whatever.

@taniaaust1 This is a very interesting question and I've been thinking about it all day and honestly am not sure what the answer is?! I've been trying to decide if I am in denial or if I feel some stigma toward wheelchairs but I honestly don't think that is the case (on either issue.) I think my struggle boils down to that I still am not sure if I really need one and second that I cannot figure out how it would be logistically practical.

If I went out alone, I could not lift, carry, or push it by myself and I have weakness in my right arm due to a separate issue besides the CFS and tachycardia. So having it would not increase me being able to do more errands alone or increase my independence b/c I could not use it alone unless it were electric (but this would never fit in my car and I could never get it out by myself.) Also, if we went to the store, my husband would have to push the wheelchair and the shopping cart which seems like an extra burden.

Whereas the handicapped placard for my car would absolutely increase my independence b/c I could guarantee myself a parking space right next to the store or Dr's office. So I think for now, if I pursue anything it will be the handicapped placard. I can only walk a certain amount before I have to stop so in my healthy days I could park several blocks from a Dr's office and be okay which is out of the question now. But if I park right by the entrance, I can walk into the bldg and be okay.

 

[AndyPandy]

My husband and I deal with grocery shopping like this - I do the shopping list and weekly meal planner. We go to the market and he wheels me to the organic cafe where we sit and have a snack and a chat. I stay there while he goes to the shops. He puts the purchases in the car and then comes back to the cafe to get me. Works well for us.

If we don't have too much to get we just pile it in on my lap in the wheelchair!

Also, some stores have special trolleys that you can clip onto the front of your wheelchair. Fabulous! Bunnings the hardware store in Australia has these. I love Bunnings!