Today we had Brad’s yearly in-person appointment with his ME/CFS specialist. This specialist is not covered by insurance, so we don’t see them very often. We have one phone call and one in-person appointment per year, and try not to go any more than that if we can help it ($455 for 80 min!).
Our regular doctor, Dr. Lapp, is mostly retired and has passed most of his patients on to his associate Dr. Hillman. Today was our first time meeting him.
Unfortunately for me, I woke up ill with a stomach issue, and only just barely was feeling OK enough to leave the house in time to make it to the appointment. But I knew it was very important for me to be there and help Brad answer the questions!
Dr. Hillman seems like a nice person, and is also up to date on the latest ME/CFS research. We met with him for an hour (which was nice because Dr. Lapp always took two hours with us, $$$$). The thing we liked the most about him is that he did NOT require Brad to do a full neurological and physical examination. Whenever a doctor requires Brad to go through those tests, he gets so tired that he can’t really move for about 5 days afterwards. Dr. Hillman said he believed the symptoms we described so no need to trigger the symptoms just to see them.
Dr. Hillman listened to everything we said very carefully, and had some suggestions about what to try next. We are going for low dose naltrexone (LDN). Naltrexone is a drug used to help get people off opioids, but at low doses it can stimulate the immune system. While Naltrexone is covered by insurance, LDN is not, and has to be gotten from a compounding pharmacy. Luckily our pharmacy is a compounding pharmacy.
He said most of his patients who try it see some improvements from it. So that is what he wants to try first. We discussed other options to try once we are on a steady dose of LDN.
The one with the most promise for getting Brad out of the house is B12 shots. He said we could do things like give a B12 shot before going out of the house to give a little extra energy. That might allow Brad to leave the house twice a week! But he wanted to try LDN first as it is more likely to work. Plus Brad HATES shots.
Brad also talked with him about a few more supplements that have been listed by the Mayo Clinic to treat long COVID. He said all three of those would be good to try, but one at a time with several months between each one so that we could see if it really has an effect. And try them after LDN and B12.
So we have a good plan in place. Hopefully the LDN will give us some improvement, and then we can start B12 injections in a few months. No idea if the B12 injections are covered by insurance or not since they have to be created by a compounding pharmacy, as well. Then a few months after that, we can try starting some of the other supplements that people suggest might be helpful.
Speaking of supplements, Brad brought all of his supplements with him to the doctor’s office just in case he wanted to see them. We used an extra large tote bag, and pill bottles were still falling out the top! Brad takes a LOT of supplements!
On the way out of the appointment, since Brad didn’t have to do a neurological exam, he had enough energy to take a video of Felix using the elevator. Notice I am walking in the video. I usually walk when I go to doctor’s appointments and restaurants because I don’t have to go far and it’s easier than getting my chair in and out of the trunk of the car. Felix isn’t as used to walking with me walking, so his heel isn’t so great. But I think he did a pretty good job!
On the way home from the doctor, we stopped by the vet to pick up some Hestia medicine. I realized that I had forgotten to take a picture of Brad’s awesome outfit, so we got one there. He is wearing mostly white with lavender accents like his hat, tie, scarf, and pin. He looks great! And Felix looks great on his lap!
We were happy to get home with Brad having enough energy to call a few people and update them on how his appointment went. I know he’ll need to rest up over the next few days just from having to leave the house, but not having to do the neuro exam really helped him not use up all his energy plus all his reserves just to get through the appointment!