I went to the doctor yesterday (Dr. M) and received the results of some follow-up blood tests. Epstein Bar Virus (EBV) IgM antibodies were still many, many times higher than the normal range. The blood for this most recent test was drawn three months after the initial draw (from early January), so I expected the antibodies to have returned to the normal range. Instead, they had hardly dropped at all. We're going to test again in another couple months with a new lab just in case the lab we used for this last test is prone to false positives. Dr. M said my EBV IgM titers are the second highest she's ever seen. She's surprised I'm out walking around.
We doubled my dose of Valacyclovir from 500mg 2x/day to 1gram 2x/day.
In the meanwhile, I continue to have symptoms of reactivated Shingles, except with headaches and brain fog this time. At first the pain and sensitivity was mostly in my right hand, but now it is on the right side of the torso in the same areas as when I first had Shingles in July, 2016. There is no visible rash this time (yet). The pain/sensitivity in the torso is much less severe than last time but the hand pain is much worse. I'm hoping the increased Valacyclovir will help that too. In theory, it should.
Both EBV and the Shingles virus (VZV) are in the herpes family of viruses. I've read that people with low Natural Killer Cell (NKC) function, like me, will continue to deal with re-activated herpes family viruses indefinitely unless they find a way to increase NKC function. There are no known sure-fire ways to increase NKC function -- only theories and un-replicated studies showing marginal effects. Astragalus root is one supplement that is mentioned sometimes. I'm already taking Astragalus root as the main ingredient in Equilibrant.
I've also read that Transfer Factor can also help with NKC function, so when Dr. M recommended it, I agreed to try that too. So I'm going to begin taking transfer factor, at least until the EBV and Shingles get under control, and maybe for maintenance after that.
Friday, April 7, 2017
Tuesday, April 4, 2017
Update on crash. Possibly Shingles again.
Starting last Monday, I entered a crash. The main two symptoms of this crash are hand pain (especially in the finger tips, but also in the palms) and a terrible headache. As last week entered the weekend, it seemed that the hand pain was waning and the headache was getting worse. But now I can see that both of these symptoms are coming and going day by day, but not resolving.
The more I think about this crash, the more I think it is another flare of Shingles, which I experienced for the first time starting in July, 2016. At that time, my doctor did warn me that, in some people, Shingles becomes a recurring problem.
The reason I think this might be another flare-up of Shingles is because the hand sensitivity feels exactly like the hand sensitivity that I experienced with my first bout with Shingles. That time, the pain was worst in the torso region (right side), but it was also present in the right hand. Apparently the pain was so bad in the torso and legs that I didn't even mention it in my post about Shingles, but it was certainly there. Now it is back in the right hand (although a little more concentrated on the fingers this time, and more overall more severe) It is also present to a much lesser extent in the left hand, which could cut against my theory.
I'm not exactly sure if the headache can be explained by Shingles. Most information on Shingles does say that headaches are part of the early stage of Shingles, but I would have expected that to resolve by now. Then again, when you combine Shingles with the already unusual biochemistry of a person with ME/CFS, it wouldn't be surprising to find it behaving in an atypical way.
It is perhaps an oversimplification to call it a "headache." Most headaches I've experienced can be described as localized in one part of the head. This one is an overall feeling of inflammation or swelling, like encephalitis. It affects the whole head except the face.
So far, there have been no rashes like the first time with Shingles, but that could be because most people don't get Shingles a second time. The immune system may have build up antibodies to prevent a full-blown rash outbreak, but not enough to prevent it from causing other trouble.
Also, both times I had a flare of Shingles (assuming this is in fact Shingles again), it was right after a weekend when I "pushed it" too much -- too much activity for a person with a weak immune system. Over the weekend before the pain started last Monday, I went camping with one of my daughters as part of a local father-daughter camping program. (I know that many would say I shouldn't be exerting myself like this with ME/CFS, but I want to try to be as much like a "normal" father for my daughters as possible. I thought I could handle this.) Although I "took it easy" on the camping trip, the nights were really cold, and I wonder if my body became worn down by the poor sleep and cold conditions.
That's my working theory as of now. Admittedly, it's mostly based on the similarities in sensations, which isn't a lot to go on. But one shouldn't discount a patient's intuition about their own body.
If this is another Shingles flare, then I would expect it to resolve in 4-6 weeks. I really hope it doesn't take that long.
The more I think about this crash, the more I think it is another flare of Shingles, which I experienced for the first time starting in July, 2016. At that time, my doctor did warn me that, in some people, Shingles becomes a recurring problem.
The reason I think this might be another flare-up of Shingles is because the hand sensitivity feels exactly like the hand sensitivity that I experienced with my first bout with Shingles. That time, the pain was worst in the torso region (right side), but it was also present in the right hand. Apparently the pain was so bad in the torso and legs that I didn't even mention it in my post about Shingles, but it was certainly there. Now it is back in the right hand (although a little more concentrated on the fingers this time, and more overall more severe) It is also present to a much lesser extent in the left hand, which could cut against my theory.
I'm not exactly sure if the headache can be explained by Shingles. Most information on Shingles does say that headaches are part of the early stage of Shingles, but I would have expected that to resolve by now. Then again, when you combine Shingles with the already unusual biochemistry of a person with ME/CFS, it wouldn't be surprising to find it behaving in an atypical way.
It is perhaps an oversimplification to call it a "headache." Most headaches I've experienced can be described as localized in one part of the head. This one is an overall feeling of inflammation or swelling, like encephalitis. It affects the whole head except the face.
So far, there have been no rashes like the first time with Shingles, but that could be because most people don't get Shingles a second time. The immune system may have build up antibodies to prevent a full-blown rash outbreak, but not enough to prevent it from causing other trouble.
Also, both times I had a flare of Shingles (assuming this is in fact Shingles again), it was right after a weekend when I "pushed it" too much -- too much activity for a person with a weak immune system. Over the weekend before the pain started last Monday, I went camping with one of my daughters as part of a local father-daughter camping program. (I know that many would say I shouldn't be exerting myself like this with ME/CFS, but I want to try to be as much like a "normal" father for my daughters as possible. I thought I could handle this.) Although I "took it easy" on the camping trip, the nights were really cold, and I wonder if my body became worn down by the poor sleep and cold conditions.
That's my working theory as of now. Admittedly, it's mostly based on the similarities in sensations, which isn't a lot to go on. But one shouldn't discount a patient's intuition about their own body.
If this is another Shingles flare, then I would expect it to resolve in 4-6 weeks. I really hope it doesn't take that long.
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