ME/CFS on the Huffington Post: "Possibly the Most Underserved and Underdiagnosed Disease?"

[Cort]

• http://www.huffingtonpost.com/socie...earch/chronic-fatigue-syndrome_b_6932242.html

Great article by Linda Tannenbaum of the Open Medicine Foundation (she has a daughter with ME/CFS) on what ME/CFS is like on the Huffington Post
Key Features of Possibly the Most Underserved and Underdiagnosed Disease: Do You Have It?

One symptom or timing of symptoms has been described as the distinguishing hallmark of the disease. Referred to as "post-exertional malaise," ME/CFS patients with mild or moderate cases may have brief periods without noticeable fatigue or other symptoms. But it doesn't last long. Then within hours or days of the activity, the patient experiences a "crash" of feeling sick, so sick they can't function. [2] It may last hours, days or weeks. Depending on how bad the episode is, the "crash" symptoms may include hoarse voice, debilitating fatigue, mental fog, headache, hot and cold flashes, nausea and vomiting. In these cases, some patients find they can start off at work feeling pretty good on Monday because they rested over the weekend. Then they find that by Tuesday afternoon or Wednesday, they are struggling to finish the work day. In addition to mental or physical activity, other triggers for a "crash" include infections, surgery, an accident or stress.

 

[Who Me?]

One of my new symptoms when I'm tired is hoarse voice. Although I actually get it within minutes of talking. This also starts with a viral reactivation.

 

[Cort]

I think I had a sore throat for the first tens years I was ill - then it went away.

 

[Who Me?]

I never had that until last year. I started some long over due dental work. I was good for the first few appointments. Then after the 5th I got home and BAM! Sore throat, swollen glands, neck thick, couldn't keep my eyes open. About 3 weeks into this (and wondering WTF?) I realized it felt like I had mono.

I upped my Famvir to 750 mgs and my throat was better. But I was still tired. I upped Famvir to 1000 mgs and within a day I was better. I had to go back one more time but this time I slammed the Famvir right before I went and that stopped the huge crash but I never got back to where I was before I went.

That was the first time I really felt a viral reactivation. Now whenever I talk my throat gets sore. A lot of that has to do with my feeling like I'm not getting enough air into my lungs. Since being on Roxithroymcin that has improved some so my thoughts that I have some kind of infection are right since I've tested positive for CPn, MPn and who knows what else?

I keep a tub of lozenges on my coffee table.

 

[Hello!]

I think I had a sore throat for the first tens years I was ill - then it went away.

Good for you! Did your other symptoms improve as well?

 

[Hello!]

I never had that until last year. I started some long over due dental work. I was good for the first few appointments. Then after the 5th I got home and BAM! Sore throat, swollen glands, neck thick, couldn't keep my eyes open. About 3 weeks into this (and wondering WTF?) I realized it felt like I had mono.

I upped my Famvir to 750 mgs and my throat was better. But I was still tired. I upped Famvir to 1000 mgs and within a day I was better. I had to go back one more time but this time I slammed the Famvir right before I went and that stopped the huge crash but I never got back to where I was before I went.

That was the first time I really felt a viral reactivation. Now whenever I talk my throat gets sore. A lot of that has to do with my feeling like I'm not getting enough air into my lungs. Since being on Roxithroymcin that has improved some so my thoughts that I have some kind of infection are right since I've tested positive for CPn, MPn and who knows what else?

I keep a tub of lozenges on my coffee table.

From what I've heard adding additional antivirals, ones targeted to your specific viruses, can really knock them back further.

 

[Who Me?]

If you don't know what virus is reactivating it's hard to know. I had famvir, it worked so I'll stick with it.