• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Famvir Day 3, NK Test Resutls

I was doing great in the pasts weeks, I was basically back to base (an 8 out of 10) and some days I would feel a good 9. I exercised a lot and was going great.

I had some virus cold or flue or who knows, spend the last 2 days feeling HORRIBLE. But today I am feeling great about a 9 (the 1 point is due to the cold not to ME) but again I go to remissions on colds.

I got my results back from Dr and My NK cells are back to normal at 3%!!! :balloons: EBV is higher and HH6v so the Dr put me on Antiviral Famvir, I am just taking half a pill for the first 2 weeks so I don't feel any different in the first 3 days, so far no side effects.

I am getting worried about my kidneys and Liver, I am going to see what can I eat and drink to make it better, so I keep it clean.

I can now exercise, I still get little PEM a few hours afterwards but nothing unmanageable. I am walking and Abs, Also will start w legs wights when I can.

Life will be great if I keep up this path!!! There is Hope.

So Current protocol
1) Morning Thyroid Meds: Synthroid 0.5 6 times a week, Cytomel 5mg 6 times a week.
2) Supplements: Fish Oil 2,000; Vit C 1,000mg; COQ10 200mg; Equillibrant 1 pill.
Potassium as needed, Vit B as needed, Folic acid as needed, Salt 2mg.
I do this twice a day breakfast and lunch.
3) Imunovir (4 pills a day week 1,3 and 3 pills week 2,4)
4) Famvir half a pill first 2 weeks. Then half a pill twice a day for 2 weeks. Then 2 pills a day.
5) Midodrine for OI : 3 pills of 2.5mg (1 at 8am,12pm,4pm).
6)Florinef for OI: half a pill 3 times a day.
7) Sleep meds: Temazepan 15mg to fall sleep, Trazadone to stay sleep 200mg.
8)LDN for pain: 3mg at sleep time.
9) Other: Juicing. Electrolyte: Coconut water as needed or pedialyte.
Stomach: Kefir as needed.

Comments

Good luck with the famvir. Luckily it's one of the milder anti-vitals out there. I was on it 4 months. Month 1 I had to build up to 8 grams a day and month two I was on 16 grams (yep 32 pills a day) at this point i had a bit of nausea, then back to 8 grams for the remainder. My blood tests remained normal throughout. How do you find the Immunovir? I hear that can make you feel crappy? I am so happy to hear that you can exercise!! That is more than I can dream of. At this point I would be so happy to ditch the wheelchair lol. Good luck on the Famvir :)
 
I can exercise because even the Idiot told me I don't have POTs, I insisted on trying the OI meds and was the best thing I have ever done for myself!!! I don't even have that I am gonna die fatigue with me at all times now. I was in bed there for a while So being this active so fast can tell you how important treating the OI is.

Imunovir does have its bad side but they started me really really slow and I have been building up the dose. My major issues on it is the sadness on weekends when I get off of it. Also, I get burning stool, and eyes and bottom :)
 

Blog entry information

Author
Seven7
Read time
2 min read
Views
535
Comments
3
Last update

More entries in User Blogs

  • Daily doodal dandy
    Just testing this out
  • Covid day 75
    Well since my last few updates I started to suffer from exhaustion and...
  • Pray
    If you pray, will you pray for me please? I have covid pneumonia and...

More entries from Seven7