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I tried it for 4-5 months I think. Very potent drug, you need to do regular blood work to make sure you’re not causing damage. It didn’t do anything for me, except give me side effects. My doctor stuck with the ME diagnosis since I wasn’t responding.

@InitialConditions I tried LDN for about 5 months, slowly increasing the dosing. At the end I was taking 4 mg. My doctor wanted me to go up to 5 mg but I couldn’t, as I was having constant headaches and I very sleepy at certain periods during the day. Since I wasn’t seeing benefits and was...

I don’t know what causes this @ScottTriGuy but I hope it gets sorted out really fast. It sounds horrible, I’m sorry you are going through this.

@DokaGirl thank you, very useful ! I was hoping to find someone who had the similar results but maybe someone will come along eventually. :-)

Please come back here to comment, I’d like to know. Good observation ! I’ve read 3 day fasting can help people get better after chemio, but it probably doesn’t work for everyone.

I just had my pulmonary test results and haven’t seen my doctor yet. They haven’t phoned me with the results so I figure they are not concerned or just haven’t looked at them (I got them online). I will make an appointment but thought I would ask in the meantime (I am not looking for medical...

. Surely it wasn’t a complete fast with just water ? . I wasn’t aware they had something of the sort going on. I’ll look into it. . How severely ill are you ? . Have you done a complete 72 hour fast and did you notice even the slightest improvement after ? You just reminded me : there was a...

Has anyone tried it ? I’m looking into it, it looks interesting to say the least. https://www.sciencedirect.com/science/article/pii/S0092867419308529 https://news.usc.edu/63669/fasting-triggers-stem-cell-regeneration-of-damaged-old-immune-system/

Very interesting stories, thank you ! I won’t pursue that road for sure.

For sure some worries were alleviated, but I now have important decisions to make, which exacerbated my anxiety. My feeling also, but I was hoping I had found something that would help. :-(

For the first time since falling ill many years ago, I think I made a connection between an event and feeling better. The last months have been difficult and I was stuck at home most of the time, only going out to make errands once or twice a week. This week, after intense intellectual...

That’s exactly how I feel. Even though I know I am very ill, my brain keeps telling me I’m not. I haven’t found a way so far to not keep trying to push my way through it. That’s how we are wired to survive, so it’s probably impossible to turn off.

@ScottTriGuy in my case it was not pre-ME. Just life with kids, not sleeping a lot, a toxic relation and a very stressful and demanding job with extra long hours. Even tired, I was doing weight lifting and training many hours a week up until I had ME. My body was responding very well to...

Before falling ill, I was chronically tired from the day I gave birth to my first child. I lived my life dragging my body around for 20 years. I was tired, but I had passions and joy in my life. And I was often happy. Now I mostly feel miserable and suffering is my life companion. Oh how I...

My machines has 7-8 noises with 2-3 tones for each. The problem is there is a little annoying sound looping behind it, so I need to buy a better one. I actually sleep with a noise that resembles what an oil furnace sounds like. It reminds me of the furnace in my childhood home, next to my...

Thank you ! I also use a tinnitus relaxer (I call it a white noise machine) but since I sleep alone, it doesn’t matter if it is loud. I’ve tried in the past to not cover my tinnitus (I have both high pitch and low pitch. The high pitch I don’t mind and don’t cover, but the low pitch drives me...

How do you use the pillow speaker and what does it do ?

@JES yes, I’m still on it but I’m seeing my doctor soon and hoping to stop. This medication has done nothing for me, and it has severe side effects. I could not go up as high as I was supposed to because of that. I’ve been on it for 3+ months now and I definitely need a break from it.

I’ve had auditory hallucinations. I was hearing voices when there was nobody in the house. My doctor explained to me that it was my brain producing sound.

I’ve used calorie counting apps for so long I can figure out the number of calories for any food or meal. It wouldn’t work for me. Unfortunately I can’t exercise very much and eating is one of the few pleasures of life I can still enjoy. So I will keep indulging once in a while. :-)