Gingergrrl's Journey with Famvir

[Gingergrrl]

It haven't updated my blog in the fear of jinxing my progress as well! Lol Will update soon! . I have always wanted to try midodrine. I wish I could convince someone to try me on it. My heart goes above my anaerobic threshold all the time. Just putting bread in toaster I'm up 110. I think that's what keeps me from being able to walk any distance. Best of luck to you Gingergirl

@RUkiddingME I totally understand about not wanting to jinx things and I am not feeling as well today but I think I overdid it the last few days when I was feeling better. I look forward to your next blog whenever you feel up to writing it! As far as Midodrine, if you have a CFS specialist or cardio, and your BP is consistently low or drops, I would think they would be okay with you trying it. Also, do you take anything for the tachycardia?

 

[Gingergrrl]

I typed my update too soon and think I jinxed myself or else I am just having a really bad episode of PEM. For 2-3 days I overdid it (by PWC standard, not normal person standards) and yesterday I had another episode of angina although it was not nearly as severe as the other ones. I had not had one in nine days and hoped they were gone forever but no such luck.

I had forgotten to take my Atenolol the night before so this may have been a contributing factor. I normally do not forget meds but we just switched this one from AM back to PM so I forget it is part of my evening regime. I still have not tried the Nitroglycerine spray (it scares me b/c it can drop your BP and mine is already low and gives you a horrific headache from what I have read) but if I have a really bad episode like before, I will try it.

Yesterday I went with my family to do two errands and had to use the wheelchair and it felt like a failure. I don't ever feel that anyone else using a wheelchair is a failure (never, ever have I thought that) so I don't know why I have a different standard for myself but I do. I guess it is more of a disappointment than a failure and I know it is a burden on my husband who has to lift and push the chair.

 

[Valentijn]

I guess it is more of a disappointment than a failure and I know it is a burden on my husband who has to lift and push the chair.

I'm pretty sure guys generally enjoy pushing wheelchairs, especially when they're able to misbehave a bit in the process. It's sort of like getting to drive something around in a very crowded place without getting into trouble

 

[Gingergrrl]

I'm pretty sure guys generally enjoy pushing wheelchairs, especially when they're able to misbehave a bit in the process. It's sort of like getting to drive something around in a very crowded place without getting into trouble

@Valentijn I never thought of it that way and wonder if it is true?!! I have only used the wheelchair three times total but there was one point in the grocery store over the weekend that my husband was pushing it really fast and I thought I was going to crash into people!

 

[Valentijn]

@Valentijn I never thought of it that way and wonder if it is true?!! I have only used the wheelchair three times total but there was one point in the grocery store over the weekend that my husband was pushing it really fast and I thought I was going to crash into people!

Mr Valentijn managed to take out an old geezer at the garden center a couple months ago - hit him right on the heel with my foot support

Though to be fair, the geezer was being a bit of a jerk in general before we hit him

But he's better at watching where my feet are now, since that's the bit that sticks out the furthest.

 

[maryb]

@Valentijn
you are so naughty but I like it

 

[AndyPandy]

Mr Andy Pandy likes to steer my wheelchair like a rally driver. Lots of thrills but no spills so far!

 

[Valentijn]

Mr Andy Pandy likes to steer my wheelchair like a rally driver. Lots of thrills but no spills so far!

You could always ask for a helmet and a roll-cage

 

[RUkiddingME]

no spills at this end either lol
My hubby has fun with me in the wheelchair, like letting me role down a ramp before he runs and catches me and even once he parked me over a stinky man hole cover. we laugh our heads off, what else can we do

 

[SDSue]

Maybe u could slowly accrue enough ahcc over a few months and be able to give ahcc a good run

What is ahcc? Thanks!

 

[Gingergrrl]

What is ahcc? Thanks!

AHCC is a kind of mushroom supplement but I don't remember what the initials stand for. My cfs dr had recommended it for me back in July but at that time I was taking Maitake mushrooms from former ND and had just bought a huge bottle of them. I bought the AHCC but my ND felt it was a bad product (the particular brand I had randomly bought) and she felt Maitake was superior but in retrospect I think she just wanted me to buy her products. In doing a google search, there were some studies that found better results with Maitake but also good results for AHCC. So, who knows which is really better? I am almost done with the Maitake bottle and am planning to try AHCC next (but a better brand.)

 

[heapsreal]

What is ahcc? Thanks!

http://ahccresearch.com/how-ahcc-works.html
I think it looks promising but I wasnt able to try it long enough at the higher doses thats needed. Supposedly used alot overseas especially in Japan and China?

 

[Gingergrrl]

@heapsreal I read that link and am definitely going to switch to AHCC when I finish the bottle of Maitake mushrooms.

Can you remind me which brand you thought was the best quality and what dose you tried? I know we talked about this before (possibly even in this thread!!!) so I apologize for the repeat questions.

 

[heapsreal]

@heapsreal I read that link and am definitely going to switch to AHCC when I finish the bottle of Maitake mushrooms.

Can you remind me which brand you thought was the best quality and what dose you tried? I know we talked about this before (possibly even in this thread!!!) so I apologize for the repeat questions.

I used kinko gold ahcc, nothing is cheap though. I have looked for a bulk supplier or powdered supps and maybe cap my own pills but still cant find it very cheap. If u find anything well priced let us know.

 

[Gingergrrl]

@heapsreal Is this the AHCC supplement that you took? How did you choose that brand?

http://www.amazon.com/Quality-Of-Li...F8&qid=1416520932&sr=8-3&keywords=kinoko+ahcc

 

[heapsreal]

@heapsreal Is this the AHCC supplement that you took? How did you choose that brand?

http://www.amazon.com/Quality-Of-Life-Labs-Capsules/dp/B001A82DS8/ref=sr_1_3?ie=UTF8&qid=1416520932&sr=8-3&keywords=kinoko ahcc

Yes that's a good price. See how it's works out costly using 6 tabs a day.

 

[Gingergrrl]

Yes that's a good price. See how it's works out costly using 6 tabs a day.

@heapsreal I actually ended up buying the NOW brand from another website b/c I was buying Epicor, Taurine and some other stuff I was running low on and just got it all together. It was slightly more expensive but similar in price. So, you were taking 500 mg 6x/day? I will definitely start lower than that and with Maitake I was only taking it 2x/day.

 

[heapsreal]

@heapsreal I actually ended up buying the NOW brand from another website b/c I was buying Epicor, Taurine and some other stuff I was running low on and just got it all together. It was slightly more expensive but similar in price. So, you were taking 500 mg 6x/day? I will definitely start lower than that and with Maitake I was only taking it 2x/day.

Look out for vitacost as they have specials like buy one get one free or half price etc but only on their products. They have an ahcc

 

[Gingergrrl]

I wanted to post an update to this thread as I am now on day 144 of Famvir (still at 1500 mg per day split into three doses of 500 mg each.) I had committed to doing a six month trial of Famvir regardless of the outcome which takes me to around the end of January. While I have not had any negative effects from Famvir, I am not certain if I have had any positive effects either.

The one thing I can say for certain that has changed is that I used to have a sickly type of fatigue in which I felt as if I had mono. I felt feverish with alternating constant chills/hot and just felt "sick" and this has completely gone away. Even when I have terrible dysautonomic symptoms, I don't feel "sick" like a flu type sick and wonder if this is b/c of Famvir?

I also wanted to report that I have an appt with my CFS doctor at OMI on Dec 23rd! I was very happy to be able to get this appt and we will be making the 6-7 hour drive up to OMI again like we did back in July. It must seem like weird timing on Christmas week but it was literally the only week that we are able to do it for a variety of reasons that I won't bore everyone with. I am excited and hopeful to go up there again and will update what happens.

 

[Sushi]

Dec 23rd! I was very happy to be able to get this appt and we will be making the 6-7 hour drive up to OMI again like we did back in July. It must seem like weird timing on Christmas week

It sounds like a great Christmas present to yourself and your family! I had an appt with my doctor on that day a couple of years ago.

Best wishes for the trip and the appt!

Sushi