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Alright so I had mono at about 21 years old (26 now) and it wasn't that bad honestly, I was just extra tired for a month and it then seemed to fully go away. At about 19 I started to decline into what now feels similar to ME/CFS. A great deal of cognitive disturbance, working memory, thought block, major fog / out of it, emotional block, cut off, etc. You can find my basic disease overview here, including my EBV labs.
So one of the things I'm doing is sort of like supplement / treatment semi educated roulette. I'm on high dose methylation and it's helping to a certain extent, but clearly isn't the root cause. I'm considering strongly now that it's a neural dominant Lyme or a viral issue (with rationale in my Google Doc), so I started with the viral issue as it's so long term to see any results, and Acyclovir was covered by my insurance completely.
I started Acyclovir 3/3/19 and got to the dose of 800 mg x 5 daily in about 3 days (fast titration). Just yesterday I began noticing some extra fatigue along with a very mild, probably 1.5 / 10 sore throat, lymph node pressure, achy joints, and achy facial sinuses. My temperature usually floats around 97.0 +/- 0.5 degrees and it's jumped up to 99.0.
I've read before that this can be a good thing as those that have gone on antivirals before have reported re-activation and then subsequently improving beyond what they were earlier, the treatment was working. To have this potentially be doing this so soon is a bit concerning as I'm in the middle of some medical schooling and I can't afford to go into a full blown relapse of EBV and be out of it for a month, it would literally put me an entire year behind if I had to drop down to the next cohort for medical leave, they're behind.
Could anyone more experienced or knowledgeable about this comment? If it's just going to be like 2 weeks of this mild re-activation that's fine but if it's destined to become a full blown relapse of doom I'm just going to stop for now.
What's interesting also is that I don't normally feel like this so I don't know if that means that it wasn't contributing to my fatigue AT ALL and now I've stirred it up or if it was just contributing to it in a different manner? This feels like how classical EBV is described where as my fatigue before was almost completely a mental fatigue. I do feel cognitively more or less the same, perhaps even a little better (I have started modafinil again which is incredible for me cognitively) so that's a plus. I just don't know if I should just let sleeping dogs lie or if I'll benefit from seeing this thing through. It's hard to say.
Thanks,
So one of the things I'm doing is sort of like supplement / treatment semi educated roulette. I'm on high dose methylation and it's helping to a certain extent, but clearly isn't the root cause. I'm considering strongly now that it's a neural dominant Lyme or a viral issue (with rationale in my Google Doc), so I started with the viral issue as it's so long term to see any results, and Acyclovir was covered by my insurance completely.
I started Acyclovir 3/3/19 and got to the dose of 800 mg x 5 daily in about 3 days (fast titration). Just yesterday I began noticing some extra fatigue along with a very mild, probably 1.5 / 10 sore throat, lymph node pressure, achy joints, and achy facial sinuses. My temperature usually floats around 97.0 +/- 0.5 degrees and it's jumped up to 99.0.
I've read before that this can be a good thing as those that have gone on antivirals before have reported re-activation and then subsequently improving beyond what they were earlier, the treatment was working. To have this potentially be doing this so soon is a bit concerning as I'm in the middle of some medical schooling and I can't afford to go into a full blown relapse of EBV and be out of it for a month, it would literally put me an entire year behind if I had to drop down to the next cohort for medical leave, they're behind.
Could anyone more experienced or knowledgeable about this comment? If it's just going to be like 2 weeks of this mild re-activation that's fine but if it's destined to become a full blown relapse of doom I'm just going to stop for now.
What's interesting also is that I don't normally feel like this so I don't know if that means that it wasn't contributing to my fatigue AT ALL and now I've stirred it up or if it was just contributing to it in a different manner? This feels like how classical EBV is described where as my fatigue before was almost completely a mental fatigue. I do feel cognitively more or less the same, perhaps even a little better (I have started modafinil again which is incredible for me cognitively) so that's a plus. I just don't know if I should just let sleeping dogs lie or if I'll benefit from seeing this thing through. It's hard to say.
Thanks,