Thanks again for your responses.
ukxmrv - Thanks for the suggestions about intercranial blood pressure. At the moment I am trying anti-viral supplements - so I don't want to mix anything. But I'll definitely keep this in mind. My aunt is an M.D. (internal medicine) and thought 'chronic sinusitis' could be a possible cause. I've never gone done the anti-biotic path, and my other doctors doubt this theory though.
lululowry - I'm sorry to hear about your headaches and short-term memory problems. I suffer from some short term memory issues, but nothing comparable to yours.
wonko - I can relate to the resistance... although I still feel my CFS is atypical (see long-winded description below)
ggingues - Multiple doctors have recommended SSRI's to me (including my Aunt), but I have not taken them. I tried St. John's wort for about 9 days (Perika, 3x daily) but felt VERY weird and uncomfortable so I stopped it. The reason I don't know if it's mono is described below.
heapsreal - thanks for the suggestions. I may indeed try out these drugs if I don't have success with the anti-viral treatment I am pursuing.
Diesel - I couldn't agree more. My relationships with my friends and family has suffered. None of them can understand what we go through - nothing they've experienced can compare.
Tymewarp#9 - I actually know EXACTLY what you are referring to by the veil, and I experience something very similar. I am so 'out of it' all the time, that I'm not connected with the world as I should be.
I still think something about my CFS is atypical. For one, fatigue is not always a problem for me. I'm able to exercise, even intensely. However, if I overdo it, the I feel worse the next few days. It's not as if I have the energy of a normal person (e.g. I always need 8+ hours of sleep, or I will feel awful), but this is not my worst symptom. I feel that I would be close to remission if my head was clear. But the fatigue and brain fog are related.
My symptoms started in May of 2006. I began to feel 'out of it', getting progressively worse each day. The fatigue was also overwhelming. There was a point where I was barely able to talk because I was so fatigued. I went to the E.R., and was diagnosed with mono.
My case of mono was not typical. I did not have a sore throat, swollen nymph glands, anything. The only symptoms were overwhelming fatigue and feeling disconnected from reality. The test used was an 'iGG antibody' test, which only proves that I had mono at one point in the past. I had another flu like illness (with the typical sore throat, etc.) that I got over in 2 weeks that past Christmas, which could have been mono. This is why I am unsure if mono precipitated my illness.
So, I was told that I had mono and would recover in about 2 months. The summer past, needless to say I was still sick (although improved). I went back to the University in the fall, only to become much much worse over the semester. Unrefreshing sleep, fatigue, post-external malaise, and "brain fog" were (are) my only symptoms. I'm not even sure this fits the CDC criteria.
After getting much worse, I took the next semester off of school. The fatigue was extremely bad during this time - I was bedridden most days. I could not walk 10 minutes without falling down. After making a lot of progress, I crashed and was bedridden again.
One year after the illness began (May 2007), I began low dose prednisone (5-10mg). This gave me my life back. The fatigue was much better, and although nothing was cured, I had a floor under me.
I took prednisone for the next year, and during this time my symptoms stayed the same. I feel that from this point forward, fatigue was not the main problem anymore. The "Brainfog" was not dented. I can have mental energy, but my head NEVER feels clear. Always full of the cotton balls.
I was able to get off the prednisone, and while my symptoms did get worse as I tapered off, I felt more or less the same after getting off completely. Little, if anything has changed since then.
Fastforward to the present....
Not much has changed in the last 3 years symptom wise. Exercise actually makes me feel better, although if I overdo it I have mini "crashes" that last 3 days after the workout. I'm able to exercise fairly intensely but it's very easy to overdo. My fatigue gets worse if I stop exercising, and it gets worse very quickly.
Nothing has ever put a dent in the brain fog. I have experimented with MANY different supplements, almost all non-pharmaceutical. I've given iHerb a lot of money. Here's what I'm taking now:
- Ashwagandha - immune modulator (T2 -> T1), adrenal support, anti-anxiety.
- Green Tea Extract - various benefits, but i may take this out at some point
- Reishi Mushroom - Anti-viral, increases interferon production, immune modulation
- Ginger, as needed for upset stomach
- Astraglus - immune stimulant, increases interferon production, adrenal support
- Curcumin (LEF Brand) - Nf-Kappa B inhibitor (indirectly anti-viral), anti-inflammatory.
- Olive Leaf Extract - Anti-viral (started today, no herxing so far)
- Oxymatrine - ordered, haven't started yet
I've only been on the astragalus/reishi for a short period of time, around two weeks. So far, I have felt worse on the antiviral supplements. I will be sure to update my progress, especially on Oxymatrine since Dr. Chia uses that. Unfortunately I have not had extensive CFS specific testing done lately (e.g. Viral antibodies, etc.), but I saw many many doctors before giving up on them.
I won't blame you if you didn't read all that, but if you did I appreciate it very much. I feel that there are not many similar situations out there (young male, brain fog as primary symptom, less fatigue problems, don't always have post-external malaise). Maybe I'm wrong?