ME/CFS with balance and walking problems, now much better with Nexavir
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- 41 years
- Last post
- Dec 2025
In their words
- Condition: ME/CFS
I have both ME/CFS since 1984 and two rounds of Covid in 2022-23 followed by LC.
In context ↗ - At worst: Moderate
I believe that Nexavir has helped keep me out of bed and able to do more things.
In context ↗ - Now: Much better
it has brought me back to better functioning so that I can live a more normal life ... I do still have trouble with balance and dizziness
Read from 13 of their posts and comments; links to the 11 this page draws on
Summary
Diagnosed with ME/CFS in 1984, they managed for decades with careful pacing, work and travel. Two COVID infections in 2022-23 brought A-fib, high blood pressure, hearing loss and balance and walking problems. They credit Nexavir, taken for years, with keeping them functioning: working two days a week, eating out, short trips. Balance problems and dizziness remain; they now use a cane after passing out and falling a week into a mild physiotherapy programme.
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What they tried
What they credit
Also tried
Their words about each treatment
- heparin · Helped
The doctors I saw gave me an orphan drug from Germany which was a form of oral heparin. It helped to stabilize my mast cells.
In context ↗ - careful pacing · Helped
was doing fairly well with careful pacing (able to run a nonprofit; paint; bake; play a little; golf and travel.)
In context ↗ - Immunopro · Helped
I have taken Immunopro which is a whey based product with glutamine and lacktoferrin ... I think it is why I was doing much better with ME/CFS until I was slammed with Covid.
In context ↗ - Nexavir · Helped
I believe that Nexavir has helped keep me out of bed and able to do more things.
In context ↗ - two antihistamines · Much worse
He decided to try me on a very small dose of two antihistamines along with Singulair and Tagamet.
In context ↗ - D-Mannose · Helped
until my ND put me on D-Mannose ... Thank heavens, no more of these horrible episodes with kidney pain and vomiting.
In context ↗ - Advil · Helped
Celebrex didn't work as well as Advil
In context ↗ - Valtrex · Worse
Valtrex made me dizzy and unbalanced.
In context ↗ - Paxlovid · Much worse
It is a horrible medicine and makes your mouth taste dreadful. Even though I tested negative in two weeks, a month later I developed a fungal rash around my mouth, A-Fib and high blood pressure
In context ↗ - a different antiviral · Not said
This time I took a different antiviral which was actually developed before Paxlovid and I did not have the heart, bp and fungal rash problems.
In context ↗ - Reflexology · Helped
I tried reflexology for it, then a PT program. I think the reflexology worked the best
In context ↗ - PT program · Worse
I decided to work on this with a very mild PT program. A week later, I passed out and hit a piece of furniture doing a lot of damage to my body.
In context ↗ - CO Q 10 · Helped
I forgot to mention that CO Q 10 has been very helpful.
In context ↗
Approaches: Anticoagulants · Antivirals · Supplements
Their path
How ill they were on the ME/CFS severity scale, estimated from what they describe at each point, with time counted from when the illness began. Hover or tap a point. The first step with a time is 38 years after onset: the story doesn’t say how ill they were before that. The dashed part: the story doesn’t say when. 1 step says too little to place on the scale and is only in the table. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| 1984 | Diagnosed with ME/CFS (then called chronic encephalopathy and immune deficiency)I was diagnosed with ME/CFS in1984 (although it did not have that label at that time)In context ↗ | Not stated | |
| before 2022 | Doing fairly well with careful pacing; ran a nonprofit, golf and travelwas doing fairly well with careful pacing (able to run a nonprofit; paint; bake; play a little; golf and travel.)In context ↗ | Mild | Pacing and the energy envelope |
| 2022-23 | Two COVID infections; A-fib, high blood pressure, balance and walking problems, hearing lossThis came to a screeching halt when I got Covid twice in the same year 22-23. My heart, blood pressure, balance and ability to walk were all affected.In context ↗ | Moderate | |
| 2025-07-15 | Heart and blood pressure improved; working two days a week, dinners out, short trips, but balance and walking still affectedMy heart and bp problems have gotten better but balance and walking are still issues.In context ↗ | Mild | Nexavir / Kutapressin (liver derivative) |
| 2025-10-31 | Passed out and injured during a mild physiotherapy programme; now walks with a caneA week later, I passed out and hit a piece of furniture doing a lot of damage to my body.In context ↗ | Mild | |
| 2025-12-02 | Heart problems settled; still dizzy and unbalancedI do still have trouble with balance and dizziness.In context ↗ | Mild |
Adverse events
- H1 antihistamines (unspecified)“The next day, my vision was blurry so I stopped all the meds ... I was diagnosed with narrow angle glaucoma triggered by one or more of the meds.” In context ↗ Side effects
- Montelukast / Singulair“He decided to try me on a very small dose of two antihistamines along with Singulair and Tagamet. The next day, my vision was blurry so I stopped all the meds.” In context ↗ Side effects
- Cimetidine (Tagamet)“two antihistamines along with Singulair and Tagamet. The next day, my vision was blurry so I stopped all the meds.” In context ↗ Side effects
- Physical therapy / physiotherapy“I decided to work on this with a very mild PT program. A week later, I passed out and hit a piece of furniture doing a lot of damage to my body.” In context ↗ Low blood pressure or fainting
- Valtrex / valacyclovir“Valtrex made me dizzy and unbalanced.” In context ↗ Side effects
- Paxlovid / nirmatrelvir“It is a horrible medicine and makes your mouth taste dreadful ... a month later I developed a fungal rash around my mouth” In context ↗ Side effects
- Paxlovid / nirmatrelvir“a month later I developed a fungal rash around my mouth, A-Fib and high blood pressure which I have never had before” In context ↗ Heart rhythm problems
Symptoms mentioned
Their words about their symptoms
- Headaches & migraine
One of my early symptoms of ME/CFS was horrible headaches (gone now thank goodness).
In context ↗ - Mast cell (MCAS) & allergies
I still have to avoid pesticides, perfumes and things like chemicals in food, but I am much better.
In context ↗ - POTS & dysautonomia
I do still have trouble with balance and dizziness.
In context ↗ - Heart symptoms & palpitations
I started having A-fib and high blood pressure one month after I thought I had recovered from Covid. ... I have not had heart problems in months
In context ↗ - Anxiety & low mood
Re. depression and malaise from Covid. I did have this
In context ↗ - Vision problems
my vision was blurry so I stopped all the meds
In context ↗
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