How were you diagnosed with ME/CFS ?

[Mollymolly]

Want to connect with others who are on the journey of diagnosis , I do have positive EBV and HHV- 6 markers, and inflammation , weakness, brain fog, fatigue... tell you story

 

[Learner1]

After I never recovered from severe fatigue after stage 3 cancer treatment, my naturopathic doctor found HHV6, 3 other viral infections and 2 atypical pneumonias.

After a year long fruitless search in Seattle for an immunologist, I finally flew to California to see one of the top CFS specialists in the US.

He found an atypical presentation of EBV, low NK cells, and low IgG subclasses 1 and 3. And POTS. And adrenergic and muscarinic antibodies linked to ME/CFS.

He diagnosed me from the very beginning with ME/CFS, but now also with common variable immune deficiency and mast cell activation syndrome.

I'm responding to his treatment plan which includes antivirals, IVIG, LDN, etc.

I'm also getting mitochondrial cocktails and methylation, amino, and antioxidant support from my naturopathic doctor, which is helping, too. My nutrient deficiencies correspond with what the metabolomics researchers have been finding.

 

[Mollymolly]

I a sorry to hear abou your cancer..hope you feel better..thank you for respond

 

[Learner1]

The good news is I'm cancer free. Beating it was easy compared to this...

However, from what I've learned, some of the same underlying issues may have caused both the cancer and the ME/CFS. Getting to the root cause and solving it is my goal!

You're asking great questions... Keep it up!

 

[Mollymolly]

Great for beating cancer I feel that if dr. Say you have a cancer which is sad news they know what to do , medication surgery pain med and so on but with ME I feel like I have to be my own dr. And keep up with blood work and who to see next and where else they will send you and there is no answer .....

 

[Learner1]

You are exactly right. I've been struck by how the cancer world has so much research, so many resources, and "standard of care" for many cancers, while with ME/CFS, we are on our own.

Even with the best help, the resources are limited, and they're making their best guesses. We do need to manage our care, and I don't know how it can be done with only one doctor's help, no matter how brilliant. This is too complex. I regularly find myself bringing ideas and research to my doctors to discuss, and we decide together what to gamble on...

Maybe 30 years from now it'll be different. I'm still holding out for that little machine the doctors on Star Trek use...

 

[Mollymolly]

I want the one from movie Passangers

 

[Molly98]

@Mollymolly sorry for taking your thread off topic but I just had to say your little dog in your profile picture is just too cute, is it yours?

 

[Mollymolly]

Yes it is she is my best fiend and sits with me all day long without barking , she is very sweet, Her name is Molly

 

[Molly98]

Yes it is she is my best fiend and sits with me all day long without barking , she is very sweet, Her name is Molly

Aww she is the most gorgeous little dog, melts my heart just seeing her picture. Mine spends all day on the bed with me but he is much bigger than Molly.

Thank you, I will not derail your thread any further