Clock is ticking! Thoughts on treatment for earliest stage ME?

Helene

New Member
We're going down the ME rabbit hole and want to take action now in the hope of preventing the illness from settling in to stay. But I don't know what treatment we should try or what specialist to see. All or any ideas much appreciated.

Here's the story:

Both of my 30-something daughters have clear symptoms of ME. I don't have any doubt it's ME as I have had ME for 31 years, my 37 year old son for 22 years and my brother for 34 years. Yup - it runs in the family.

Both daughters were totally healthy, leading active lives -you know - 20km runs, mountain biking, hiking up mountains. In fall they both had a series of colds and flus and by November we realized they were getting PEM from exercise. Other symptoms are the usual - sore throat, headache, fatigue, some muscle pain, chills. They're both still sleeping fine, don't have brain fog or much pain. Daughter1has been basically on the sofa the past few months and Daughter 2 is up & working from home.

Both are both resting & pacing with a HRM to avoid PEM. Already eat a healthy diet, drinking lots of fluids, taking Mg, Vit D3, one started LDN. They have access to Mestinon (POTS symptoms but low RHR) and probably any other treatments, thanks to open minded family physicians,& naturopaths. Needless to say all the standard medical tests were normal.

Any ideas for treatment at this early stage? If it wasn't for our family history who knows how long a diagnosis would have taken. Maybe there's an early window for recovery, a golden opportunity not to be missed.

Any thoughts on treatments or specialists you'd recommend if you were in our place so appreciated. We're in western Canada & can travel to the USA.
 
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Apo Sci

Active Member
What's their history of animal exposures, tick bites, viral infections (EBV, HHV6, etc)? Any depression/anxiety?
 

Helene

New Member
What's their history of animal exposures, tick bites, viral infections (EBV, HHV6, etc)? Any depression/anxiety?
Thanks for your reply.
Tick bites - None that we know of, negative on Canadian testing, PEM is main symptom
Viral Infections - no indication of active infections from standard lab tests
Depression/anxiety - nope
Not sure what you mean by animal exposures?
 

Apo Sci

Active Member
No the history of viral infections. What preceeded the ME? They are outdoors so that's high risk for ticks. Outdoor cats, dogs, etc.
 

Helene

New Member
Yes - series of flus/colds for a month or two, which in hindsight some may have been PEM. None were serious so didn't have any lab work then.
No Lyme in northern area where younger daughter lives, some in area where older daughter lives.
 

Apo Sci

Active Member
I'm not aware of any link between the flu or colds causing ME except to worsen a pre-existing infection(s) i.e. Epstein-Barr virus.
 

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