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I was never bed ridden. I would say I was at a 4 at my lowest. I never lost my job but I was becoming desperate and had to take vyvanse prescription amphetamine to just to navigate the world at one point. I have great vision but horrible eye issues. Bright light would drive me into the house like a vampire. Intestinal issues. I spent all my free time in bed. I don’t know what my CFS was. I had elevated EBV and CMV viral loads etc. I also thought this was PFS (post finasteride syndrome) after taking finasteride in my late 20s and early 30s. There is literally a whole other message board propeciahelp where PFS sufferers (which mimickes cfs) got better on truvada. I don’t know. I had classic CFS but classic CFS is very similar to classic PFS. I had one of the best CFS specialists in the world tell me I had CFS and I’ve had a really good endo tell me I had PFS.
All I can say is that in my case 4 things have lead to a huge change rapidly.
1.) diet. I do keto 50% of the year off and on. I eat pretty healthy. Rarely sugar and no processed foods. I cut alcohol out except on vacations and special occasions. (I was a drunk over the holidays on vaca). I eat/drink large amounts of probiotics. Keto started my journey.
2.) I started exercising religiously when this got bad. Obviously for some here excersise makes you worse but I treat exercise as a job I’m required to do at least 5-6x a week. I’m up every day before work or at lunch and I run or I’m in a bike or elípticle or weights at least 45m a day). I started doing this at my lowest point and probably only did 30m a day but it helped greatly with the fog. It made me worse at first but changed after 3 months or so. I looked at my tough grandfather who worked till he was 80 on a farm and made it through the depression and I decided he would tough this out. I couldn’t imagine him laying in bed even for the flu. Against the advice of my doctors (I had Dr Sundance Levine in NYC who is a specialist on this), I pushed myself every day. If this is an immune disorder I wanted my immune system healthy and exercise is a great way to do this. Again, I know some people are practically bed ridden so this is not an option but for me, no one was going to tell me resting in bed for years is going to fix this.
3. ) possibly truvada and antivirals. Can’t prove this helped but I wrote about this enough that it was significant to me in 2016. Literally in 3 or 4 months of taking truvada it’s like a cloud had lifted. This is about the time I also returned to the gym. This was also the time I changed my diet so it could be 100% diet (I don’t remember the order now). In this time something significant changed. I started truvada maybe 8 months before visiting Dr Levine. By the time I visited Dr Levine I had moved from a 3/4 to a 6. Levine started me on other antivirals and I progressively got better. Was it my diet? Was it truvada? Was it the additional anti virals? Who knows.
4.) when I got to about 85% about 11 months ago I decided to do TRT. Obviously this will not help women but any kind of HRT could help depending on age. I hit rock bottom at 36 and I’m 44 now. By this point I was active again and at the gym daily but still suffered lack of energy and foggyness. My hormones were not awful but my T was about 350-380. Technically not low enough for most Dr’s to prescribe testosterone but there are 20 online clinics that will which is 100% legal. If you are under 410 you can get prescribed testosterone. I decided that additional T would improve my immune system and made the jump. I just started maybe a year ago January 2018 so it’s something new but has turned me 18 again. It shot me from an 8-10 in 6 months. I don’t think everyone should mess with your hormones. It’s a tough decision but after dealing with this for 10 years I’d inject bleach if it made me better.
Obviosly this is my own journey and we are all different. I don’t think CFS is one single disease but many different diseases with the same symptoms.
I told someone I was 95% of where I was when this all started and they asked me what was the 5% I’m missing and I suddenly realized ... I got old during this process. The 5% I’ve lost is just me naturally being 44. I’ve seen people that have been active on here for 6+ years. If you have this for 10 years You are never going to feel like you did before this started.
