One of the sneaky wonders of ME/CFS is that we all are so different and even our OWN symptoms change and shift all the time.

Personally? I'd go to chronicneuortoxins.com and take the $15 mold test. I know others here have had great success w/treating mold via other avenues as well. But it's worth finding out if you're moldy. LOL. The other stuff? I tihnk it could be helpful to know what your Epstein Barr results are and whether or not you test positive for Lyme's Disease (but the Western Blot is a LOUSY test!!!!!!).

I think meds are prescribed on an "as needed" basis for specific symptoms.

Welcome to our confused yet friendly group!!!

I second that! If you do this first, you can at least narrow it down quite a bit. Short of a properly diagnosed, acute illness as your kickoff point, this is the single least hassle and cost/greatest benefit thing you can do in terms of sorting it all out.

Even if you find out what the cause was, you will still have a road to travel finding out what works best for you - but at least you'll know if you're on the right road or not. Beats letting people try out approaches designed to prove some pet theory, anyway.

Yes, you expressed my feelings so clearly. I have been diagnosed with CFS for about 3 years now. I had lots of blood tests. So many I am not sure now what they were looking for. I just know the test were always negative. They couldn't find a cause for all my symptoms. Yes, my symptoms vary from others with CFS and even vary from month to month. When I came to this site for support, I felt overwhelmed with all the advice and theories being offered. Should I have more testing done? Should I seek out appointments with specialists miles away from my home? I have decided that I don't have the energy to do more. I have CFS. I have had to change my lifestyle. My life now is different, but good. I have a nurse practitioner that is my main health care provider and most treatments/supplements she recommends help to a degree. I am able to work part time in the education field (I used to be a full time teacher). Next month or next year, I may feel differently about pursuing other treatments or tests, but not right now.

Regarding the mold tests - if I had these and they came back positive would this mean I dont actually have CFS i have an illness relating to mold exposure or would it mean I do have CFS but mold plays a part in its cause?

I dont know where the line is between what is cfs and what was thought to be cfs and is actually something different that you find out about if you have the right test etc.

Thanks

The amount of blood tests they do without telling me what they're testing for! i only have one flipping vein they can take it out of, bruisedness :p

From what i've read M.E/CFS is often used as a term for many things which dr's just can't find anything else to explain it.

The list of symptoms associated with M.E is huge, and it seems to range from getting one or two to all of them, reflecting the variation of the illness. I guess that's why there's so many theories on how you get it and why, and which one caused yours.

Meds. think that depends where you are and your dr's view on them. i've found that my current neuro is very reluctant to prescribe me anything for pain, and goes in more for the preventative side of things, which make me very ill, so i have no form of pain relief at the moment.

Researching meds that have been suggested to you? and then mentioning them to your dr. doesn't always make you popular! but at least then you feel like you;re doing something.

sorry if this doesn't make alot of sense! i'm rambling :p

xx

It's not actually a 'mold' test. It's a Visual Contrast Sensitivity Test. It measures for the presence of neurotoxins on the optic nerve, regardless of which ones they are or how they got there. They keep you from being able to discern low-level contrast visually. Old test, well-established and documented. The Department of Defense used it to spot neurotoxic exposures in soldiers. It's just not often used by most practitioners.

If you pass, you get to go look at other ideas, like infectious illnesses. If you flunk, you get to start looking for the source(s) of those neurotoxins and how to treat them and whatever else happened to you. It's reliable and objective - but not specific to any particular neurotoxins. It's useful as an up front diagnostic so you and your physician can know where to direct your attention and treatment. Wish I'd known about it years ago, and wish more people knew about it now! Could have saved a tremendous amount of time, money, and suffering.

CFS is so confusing because not a lot is known about it. And I think that is because not everyone gets it the same way.

So what helps for me might not you or it might help me more than you etc.

And most doctors diagnose you and leave it at that because they dont know anything about it either. I keep trying new things and new doctors and learn more about my body specifically and what will help my CFS specifically. It is all very confusing and CFS doesnt help your memory at all! lol

Sense not everyone is exposed to the same things I think it is baffling to a lot of people how to treat it or how to fix it or even know how to find the disease under a microscope.

I have doctors who go down the list and think they have found out what is going on with my CFS so we are going to try something new yet again...with everything we try we elimate one more treatment etc. And most of the time even if it doesnt do a world of good it helps my CFS some.