• Welcome to Phoenix Rising!

    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, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Would my ME/CFS be considered post-viral if the onset was 10 months after an infection?

Messages
26
In February 2020, I had confirmed Influenza type A. The fatigue, fever, and other symptoms went away in a matter of days once I started taking Tamiflu. However, I immediately began experiencing extreme nausea and vomiting and three years later after exhausting all the GI tests, the cause was never found. Even though I was nauseous all through 2020, I had no fatigue and I was able to stay in school and exercise 3 hours a day.

10 months later another event occurred: I had a dangerous accidental medication interaction that put me into serotonin syndrome. After the accidental medication interaction my ME/CFS abruptly began (and the nausea continued).

The flu that I got definitely caused some major change in my body right away, but it wasn't ME/CFS at first. Do you think it is possible that my ME/CFS is related to the flu I got almost a year before? A lot of my current symptoms are almost identical to that flu only now they sometimes feel magnified from before. I get the same type of fatigue/aches and I have fairly frequent low grade fevers.

I am curious as to what you think and or if you have had a similar experience.
 

Judee

Psalm 46:1-3
Messages
4,542
Location
Great Lakes
This may help you to determine: https://me-pedia.org/wiki/International_Consensus_Criteria

I also like the CCC version: https://me-pedia.org/wiki/Canadian_Consensus_Criteria

https://me-pedia.org/wiki/Primer_for_patients

Edit: I do hope you are not still trying to "push through" and exercise though. Your best chance of recovery is in the first two years but only with drastic lifestyle changes like ART (Aggressive Rest Therapy).
(I keep saying this to new patients so I finally added it to my About section: https://forums.phoenixrising.me/members/judee.28070/#about :))
 
Last edited:

hapl808

Senior Member
Messages
2,213
My onset was a bit more gradual, but similarly the GI problems started immediately after an illness and continued over the years as more problems appeared.

It's very hard to rule stuff in or out unless you get a separate definitive diagnosis. Since no one really understands ME/CFS, it's diagnosed with a series of somewhat arbitrary criteria. Until we understand the mechanism better, that's the best there is.

Also agree with @Judee that trying to push through the early symptoms is a bad idea - one of my big regrets, of course done with the encouragement of doctors.
 
Messages
26
This may help you to determine: https://me-pedia.org/wiki/International_Consensus_Criteria

I also like the CCC version: https://me-pedia.org/wiki/Canadian_Consensus_Criteria

https://me-pedia.org/wiki/Primer_for_patients

Edit: I do hope you are not still trying to "push through" and exercise though. Your best chance of recovery is in the first two years but only with drastic lifestyle changes like ART (Aggressive Rest Therapy).
(I keep saying this to new patients so I finally added it to my About section: https://forums.phoenixrising.me/members/judee.28070/#about:))
I have been doing ART for 8 months now and unfortunately I just am not getting better and I still am moderate. I will still keep doing it, but I feel like the recovery window was has pretty much closed as I am now I am past two years. During months 5-7 I agressively rested and saw dramatic improvements, but I then pushed myself too much and worsened my condition.
 

Shanti1

Administrator
Messages
3,334
Some of us seem to be able to identify a single infection after which we were never the same, and for others the onset is more nebulous. For me, EBV and candida are involved in my pathology, but my onset was a slow worsening over time, with some recovery after addressing those pathogens. For each of us it seems the road to ME/CFS is a bit different but for all of us there seems to be involvement of some pathogen, toxin, or jolt to the nervous system and or immune systems. Certainly others have reported onset after what seemed like typical influenza. Personally, I think it is worth testing antibody titers to EBV, HHV-6, Cytomegalovirus, and to consider the symptoms of and testing for enterovirus (Coxsackie B/echovirus). When I first started my journey with ME/CFS, I found Hip's road map helpful to orient me to testing and antiviral treatments: https://mecfsroadmap.altervista.org/.
 
Messages
26
Some of us seem to be able to identify a single infection after which we were never the same, and for others the onset is more nebulous. For me, EBV and candida are involved in my pathology, but my onset was a slow worsening over time, with some recovery after addressing those pathogens. For each of us it seems the road to ME/CFS is a bit different but for all of us there seems to be involvement of some pathogen, toxin, or jolt to the nervous system and or immune systems. Certainly others have reported onset after what seemed like typical influenza. Personally, I think it is worth testing antibody titers to EBV, HHV-6, Cytomegalovirus, and to consider the symptoms of and testing for enterovirus (Coxsackie B/echovirus). When I first started my journey with ME/CFS, I found Hip's road map helpful to orient me to testing and antiviral treatments: https://mecfsroadmap.altervista.org/.
I have been seeing Dr. Susan Levine and she ordered all those tests minus the enterovirus ones (which I would like to get biopsies during my next endoscopy). The only "abnormal" one was my HHV-6 igg, but it seems like almost all adults are positive for that, so I am kinda confused about the significance of that. Dr. Levine put me on famvir 500mg which I have been on for 3 months with no effect. She said it can take up to a year for antivirals to work, but I am skeptical because I feel like barely anyone I have talked to has had any benefit from antivirals for HHV-6 igg.
 
Last edited:

Shanti1

Administrator
Messages
3,334
Glad you are seeing an ME/CFS specialist. My HHV-6 IGG was elevated, but just slightly, so we didn't consider it active. My EBV titers, however, were through the roof! And indeed many symptoms resolved with valicyclovir. I know some doctors make the judgment call based on how elevated the IGG titers are, but really I think it can be as much an art as a science.
 
Messages
26
What medication put you into serotonin syndrome?
It was kinda complicated, as it involved three medicines. First, I went off of cyproheptadine, which lowers serotonin and is used to conteract serotonin syndrome. I also doubled my lexapro dose that same day from 10mg to 20mg. Because I was nauseus from all of this, I threw on zofran on top, which also increases serotonin. It was a mess. My doctor realized being on cyproheptadine and lexapro at the same time didn't make sense since they counteract each other.
 
Back