• 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.

Background info

ME/CFS started in 1998 with primary Epstein-Barr Virus infection (infectious mononucleosis) in high school. Acute symptoms for ~6 months.

Improved slightly over the years, but peaked about 60-ish on David Bell's scale. Went on high-dose Olive Leaf Extract and immune stimulants in 2009-2010 but started to develop neuropathy so discontinued. Was stable throughout the 2010s. During the mid 2010s, I worked part time outside and improved to 70 with frequent sun exposure.

Over the years I've had frequent/prolonged respiratory infections, but always recovered back to baseline. Mild reaction to Pfizer COVID-19 vaccine. Sick with COVID-19 with severe fatigue and hypersomnia for two and a half weeks. Recovered back to baseline. Sick with influenza in late summer 2023. Finally returned to baseline after 5 weeks.

September 2023 went on 500mg valacyclovir twice a day. Decreased to 30 on the Bell scale. Stopped after 7 days due to the extreme severity of symptoms.

During the week on valacyclovir, my health worsened significantly. I developed much worse small fiber neuropathy, Raynaud's syndrome, purple fingernails, severe/frequent episodes of orthostatic hypotension, excess thirst, frequent urination, chest pain, and severe PEM (previous PEM was minimal in cool weather and mild-moderate in warm weather). Liver, kidney, and metabolic panel are normal. EBV PCR negative. EBV EA, EBNA1, and VCA-IgM negative. VCA-IgG positive. CMV negative. HHV6 not tested.

The "side effects" I experienced while on valacyclovir are not listed as normal side effects. Neurotoxicity is possible on this medication, but mainly occurs on elderly people receiving high doses for shingles, Most (80-90%) cases of neurotoxicity are in persons with impaired kidney function. Neurotoxicity is normally reversible upon cessation of treatment. In reality, it seems like all of the "side effects" I experienced are just ME/CFS symptoms becoming drastically more severe.

My substantial worsening could either be due to mitochondrial toxicity of the drug or due to increased release of viral antigens or both.

In November 2023 tried 1-2mg tenofovir alafenamide for a few days. Same response.

I began taking antioxidants/mitochondrial support supplements, such as CoQ10, in early 2024. Decided to go back on Valacyclovir in April 2024 due to still being "stuck" at 30. Titrated dose up from gradually and reached 500mg x 2/day on May 1st. Had temporary worsening to a 20 but then went back up to 30.

References:
https://me-pedia.org/wiki/Bell_CFIDS_disability_scale

Comments

Just a suggestion but maybe stop with the meds, trying more things isn't always better with this disease, and see if your body will get back up to 70 over time if it can.

Then pace, practicing aggressive rest therapy,* eat very healthy, avoid exposure to environmental toxins like fragrance and mold to hopefully stay there because honestly most of us here would love to be at 70. (And actually do those things now to help it get back to 70. :))

Anyway, just a thought.
* https://forums.phoenixrising.me/members/judee.28070/#about

(Here's the first one on that list to get your started: https://forums.phoenixrising.me/threads/long-sleep-therapy-for-healing.88000/#post-2404470

It's very encouraging even though it means living a life that is different than the rest of the world.)
 
Hi Judee. Thanks for the feedback. I went 6 months on no meds and it made no difference. Will look at your links.

Yes, most people would love to be at a 70, myself included. Wish I had never started taking the valtrex, but I can't undo what I did.
 

Blog entry information

Author
cfs since 1998
Read time
2 min read
Views
400
Comments
2
Last update

More entries in User Blogs

Back