Good morning SOC
1) on the OI...what do you take? My daughter has been on midodrine andFlorinef, but not much except side effects. So, she's on high salt now, with potassium.
What I take may not be the right treatment for your daughter.
There are multiple types of OI which require different treatments. In addition, we all have individual physiological differences. That said, I'm happy to share with you what works for me and my daughter.
First, OI treatment alone did not make a huge, sudden improvement. It was one of a number of treatments that together made a significant improvement over time. My OI treatments are:
1) Drinking at least 3 L of fluid daily, 1-2 L of which is well-balanced electrolyte water (we use ElectroMix in water).
2) Fluid loading to compensate for overnight dehydration. That means chugging 500-750 ml electrolyte water immediately before bed and the same before getting out of bed in the morning. If I start the day dehydrated, as many of us do without management, I feel terrible all day. If I then try to catch up my fluids, it takes all day to get to the point where I feel okay. It's much better to pre-load the night before and in the morning so I don't start so far in the hole.
3) Florinef -- Florinef needs the extra fluids (see 1. above) to work properly. If you're not drinking enough, you won't get much effect from it. It also didn't work particularly well for me until I added:
4) Verapamil for tachycardia. Most doctors prefer a beta-blocker instead, but because I have used a rescue inhaler in the past, my doc thought it safer to go with a calcium-channel blocker for me. The tachy med didn't work very well for me without the Florinef. For me, it takes the two together to make a noticeable difference.
5) My daughter has taken Midodrine on and off, but I have never taken it. I think it doesn't address our particular OI issues, but I've heard it works very well for others.
6) Potassium -- I get plenty of sodium in my diet, so I don't take extra sodium because it can mess up the sodium-potassium balance. Because Florinef depletes potassium, most of us are more likely to be potassium deficient. Daughter and I definitely are. We take extra potassium either through supplements or food sources.
2) she was on immunovir years back
Neither of us have taken Imunovir, although my daughter took inosine for several years. For us, treating the viruses directly has been the most effective treatment, but I'm sure that depends on the individual nature of each person's immune abnormalities and viral load.
3) coQ did help in the past. Which brand are you taking?
There was a liquid one she used to take,and I've forgotten the brand....it had adoctor's name, and was a small brown bottle.
I took 200 mg of CoQ10 for years to very little effect. It wasn't until we increased to 1800-2400 mg ubiquinone daily that daughter and I noticed a substantial benefit from CoQ10. This is the dosing level used for genetic mitochondrial disorders, so it seems a reasonable dose
if our ME/CFS might be resulting in an acquired mitochondrial disorder.
It's pricey, but it's worth it. We take the
Healthy Origins brand of ubiquinone and the same brand of
ubiquinol because it has worked best for us, but I'm sure there are other good ones. Our specialist said to make sure whatever brand you take uses the Kaneka manufactured CoQ10. We take both ubiquinone and ubiquinol on the advice of our ME/CFS specialist. For us, 600 mg of ubiquinol and 300-600 mg ubiquinone works best. The balance (and dose) is probably different for different people. When we are less active, we can get by with less (~1500mg ubiquinone-equivalent), but we generally have to stay in the 1800mg-2400mg range.
4) but at the moment I'm concerned about the effect of muscle atrophy, or whatever. The massage lady says she has no muscles left in the thighs or arms or back.
I didn't develop muscle atrophy while I was in your daughter's state (about 4 years, I think), although I did lose some muscle mass and strength. It is coming back as I am more and more able to move without PEM.
There are
some good, easy exercises at MS Trust that can be done lying down or sitting. They can help maintain some muscle function if your daughter does them in a way that doesn't cause PEM. That probably means means only 5-7 reps of each exercise with 5 minutes of rest between exercises, no more than 3 exercises in a session. I was told I could do that 3 times daily if it didn't cause PEM.
Frankly, it drove me nuts to "exercise" in tiny amounts like that, so I didn't keep it up. I found that increasing activity (unloading dishwasher, folding laundry) as I was able to do so worked just as well for me. However, if your daughter is developing muscle atrophy or other major problems, she may need to do some maintenance "exercise" at a minimal level.
Best of luck to you and your daughter. I've been in that place where walking across the room causes PEM. It's a miserable way to live. What saved me was seeing an ME/CFS specialist and getting proper medical treatment. It was very difficult to travel to see an ME/CFS specialist. The first one was a 6-7 hour car drive away. Daughter and I had to lie down in the car during the drive and went straight to bed in the hotel. We slept most of the time we were there except during the doctor appointment itself. It was very difficult to manage in the moment, but worth it in the end.