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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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How do you define CFS?


Senior Member
I dont know if I have CFS or not. How do you define it?

I did not start off with a virus or viral feeling. I started with POTS diagnosed after birth of my child, but my symptoms were not worse.. just got tested because my sister was sick and bedridden and diagnosed with severe dysautonomias.

Did not take medication for 8 years or so. Had an elevated pulse. No problems exercising, standing that I was aware of.. that effected me adversely.

Had an attack one night with chills, cold sweats, raging pulse and BP. Lasted few hours. It was like my body was in shock. Then on clonapin and toprol since. Down hill over the next few years.. babesia diagnosis and clinical diagnosis of lyme. 6 months of abx, anti-malarial. Aches, neuro symptoms, fibro. Got worse after a short round of flagyl and have not improved. Getting worse. Pain (can be overwhelming), fatigue, cannot recover well esp from anaerobic exercise, feeling of O2 loss, peripheral neural pain, etc. Lots of metals in my urine. Low amino acids, almost none. Methylation genes messed up. Low glut, low folates. ??? No viral counts show up except high IgG antibodies around 4000 to EBV. No CP and other bacterias except in my gut where I have a stew going on.


Thank you.


Senior Member
I'm not any kind of medical practitioner at all! Which may be about to become abundantly clear :)

Side effects of Toprol - which seems to coincide with onset of many of your symptoms

*slow or uneven heartbeats;
*feeling light-headed, fainting;
*feeling short of breath, even with mild exertion;
*swelling of your ankles or feet;
*nausea, stomach pain, low fever, loss of appetite, dark urine, clay-colored stools,
jaundice (yellowing of the skin or eyes);
*depression; or
*cold feeling in your hands and feet.

Less serious Toprol-XL side effects may include:

*decreased sex drive, impotence, or difficulty having an orgasm;
*sleep problems (insomnia);
*tired feeling; or
*anxiety, nervousness.

Drugs one should avoid while on Toprol include antimalarials and many others

While many of your symptoms and findings are very similar to others here, I would want to take a serious look at drug reactions and interactions if I were you.

Hope you are able to sort things out and feel well again!
All the best,


Senior Member
Thank you for the info... ?? I dont know if its the toprol or not. I take the lowest dose.

I was on the anti-malarial drug, Mepron ending 1.5 years ago. I went downhill faster after a round of flagyl. Could not walk right for example. That cleared a good bit with glutathione push. But never the same.

Does CFS always start with a viral like infection?

I am not functioning well. I can pace myself, but I am on the sofa alot. Lots of pain and fatigue, unstable muscles, weak.


It's a confusing world, isn't it. Oh for clear-cut diagnoses. You said you were diagnosed with Lime's. It's symptoms are similar. Does your doctor also know about ME/CFS?

I like the clarity of the Canadian Concensus Definition (I'm tired and get names mixed up). Here's a link to the Canadian diagnostic tool for a start

good luck


Senior Member
Thank you.:) That is very helpful. I have a clinical diagnosis of lyme. But I also have these symptoms.