Lost... could really use some guidance/advice.

[hunter1899]

EBV since December 2019. Got better then started getting fatigue again and PEM (which brings spleen and liver pain, fatigue, and pressure in the forehead and eyes). Tested a 10.44 for Ochratoxin. Daily fatigue goes up and down but overall more tired than before EBV. But I feel like I’m more confused then ever. Would appreciate so advice.

1. seeing a functional med doctor on the 7th. Was hoping he would prescribe Valtrex but he said he wants to address mold, heavy metals (haven’t been tested) first. The way I see it if this crap was due to mold and heavy metals everybody here would just detox and be fine. Just seems like a waste of time. What are yalls thoughts? Should I just find a doc to give me Valtrex? How do I find one?

2. I’ve heard Valtrex may be dangerous to the liver or kidneys. Can you tell me more about this and how doctors monitor this? Do they just tell you to look out for certain symptoms?

3. I’ve cut out mold causing foods and feel more tired than ever. Is this normal?

4. Considering trying selenium and creatine -are there any dangers to this?

5. finally, the overall fatigue and PEM are in line with CFS, but I do feel better after naps and I have no problem sleeping. I don’t have muscle or joint pain either. My only pain is dull spleen and liver pain at times and mainly pressure in my eyes and forehead and a heavy feeling to my eyelids. I’m not bedridden. I actually feel great while I sweat. It’s just the next day I feel like crap. No as bad the day after. So confused if it’s EBV or CFS.

Appreciate any guidance

 

[Wishful]

The way I see it if this crap was due to mold and heavy metals everybody here would just detox and be fine. Just seems like a waste of time.

That's my feelings on it too. For doctors (depending on the medical system), it's probably an easy extra fee, and it's hard to argue that it's completely useless. I did have a toxin survey done (before I knew about ME), and nothing abnormal was found, so no, I don't think that heavy metals are involved with most people's ME. Molds could be a factor in the severity of some people's ME, but I doubt they are a factor for most.

I'm also not a supporter of viruses being the root cause of ME. I think they are a contributing factor in the severity of ME for some people, but not for others. I'd look more into the proper tests for the various viruses that are believed to be a factor for some people, and see if you fit the profile for the ones that benefited from antiviral treatments. From what I've read, it's not a definite "everyone with ME should try antivirals" theory. I seem to recall that several people here have undergone the treatment and had no benefit.

I’ve cut out mold causing foods and feel more tired than ever. Is this normal?

I think it's reasonably common for people to feel more tired as their ME progresses, whether they cut out mold causing foods in that time period or not. One problem with ME is that we never know for sure whether any changes are from something we did recently or from something we aren't even aware of. If you go back to those foods and feel better, and repeat the experiment (cutting, then adding) several times, you can improve the reliability of the correlation.

but I do feel better after naps and I have no problem sleeping.

I don't feel better after naps or sleep, and I didn't have trouble sleeping in the earlier years, and lack of sleep doesn't make my ME symptoms worse. It's not easy figuring out from symptoms whether you have true ME or something else.

I can't remember if I asked earlier: does you PEM have a consistent delay, and how long is it? As in another recent thread, other medical problems can make people feel worse after exercise. True PEM typically has a significant (and consistent?) delay.