Hey everybody – I've been absent from patient communities for a while, but I wanted to give my long-term experience with IVIg. The tl;dr is that I think it helped to get me from mild ME/CFS and POTS to about 80-90% of my original health, with the ability to exercise without much (if any?) negative consequence and work a demanding full-time WFH job without ever really needing to take mid-day naps anymore.
I originally got sick in 2017, from an unknown virus that I got from a coworker (who also spent a few days exhausted, but then recovered). Before getting sick, I would sleep 8.5-9 hours a night and wake up with a huge burst of energy that was pretty sustained all day. Afterwards, a few weeks followed of 12 to 16 hours of sleep per night, which gradually fell to about 9-10 after a few months. Every winter for a few years I would decline, followed by a rebound in the summer. I exercised a lot and worked a full-time, in-person desk job, and often felt exhausted, headache-y, etc. I knew I had very mild to mild ME/CFS, but this was before the pandemic and it just became obvious that I wasn’t going to get any help, so I resisted learning anything about it and kept pressing on. Over the years, the winter declines got deeper and the summer rebounds got shorter and shorter, until around 2020 when they barely came at all (in retrospect, this may have been associated with greater exercise – I learned to ride a bike and started biking a lot). During good periods, I was at Bell 90, down to maybe 75 or 80 during bad periods.
During the pandemic, I was reading a lot more about Long Covid, and getting some hope that help might be coming, since it was obvious that I had the same disease from a different virus. I read
this New York Times article and saw that Susan Levine was prescribing LDN with positive results, so I scheduled an appointment with her and got a prescription around February or March. I felt amazing taking it for about three weeks, then the effects quickly wore off and I could not bring them back.
In mid-2021, I got POTS (before this, I had no dysautonomia symptoms that weren’t also ME/CFS symptoms). It came on pretty suddenly, I suspect from the Covid vaccine but it wasn’t immediate (maybe two months after my second dose) so who knows. With POTS, just existing became uncomfortable in a way that it wasn’t when I “just” had ME/CFS. I fainted a few times, and started spending most of my life supine. I stopped exercising.
It was around this time that I started reading a lot about the illnesses. I begged Dr. Susan Levine for a Mestinon prescription over email, and she gave it to me. I felt pretty good for a very short period of time, and then declined again. Same story with midodrine.
Around this time I started getting involved in patient communities. Back when Twitter still existed, I was @postviraltrials there. Reading about BC007 and Carmen Scheibenbogen’s research, I shipped my blood to CellTrend in Germany. I was disappointed to not have any of the autoantibodies that they associated with POTS and Long Covid (
see here), but I was positive for autoantibodies against TS-HDS. Lauren Stiles told me that that can qualify you for IVIg, so I found a doctor near NYC (Dr. Maria Muste) and saw her. She was intrigued by the autoantibodies and gave me a tilt table test (which I failed with flying colors), and also took a few skin biopsies. My lower leg nerve fibers turned out to be degraded compared to somebody my age (and indeed I did feel some mild tingling in my arms, and mild numbness in my feet). That three part test – anti-TS-HDS autoantibodies, a positive TTT, and a positive skin punch biopsy – convinced my insurer to let me go on IVIg (with some small fiber neuropathy-like indication, something like idiopathic immune-mediated autonomic neuropathy), which Dr. Muste prescribed at 1.2g/kg/mo.
I started the infusions and was disappointed to not notice any immediate difference. I tracked a lot of things, and nothing seemed better. I stayed on it for seven months, and then went off of it.
At the time I was desperate to find something that worked, and started literally traveling the globe looking for treatment, including to Mülheim in Germany to see Dr. Beate Jaeger (she found microcldts, though I had gotten Covid for the first time a few weeks prior; she prescribed me blood thinners, which did nothing) and going to Anchorage to see Dr. Luke Liu for an intensive course of stellate ganglion blocks (they did nothing). I did some whackier things (including giving myself two BCG vaccines, one of which left a scar – and not the type it’s supposed to!!). Nothing worked.
At this point I started to look back on my time on and off IVIg and I thought something Dr. Muste said, which was that a lot of patients think it isn’t working and then think about what they could do before and after they were on it and realize it was working, just subtly. I thought it was a bit ridiculous at the time – I was so sick, how would I not notice getting better? But I think she was right. I had less brain fog and fewer “fatigue days” (days where you wake up abnormally tired, are brain foggy all day, and have to take a nap or two) at the end of it than at the start. And then as I went off of the IVIg, I sustained it for a month or two and then started declining again.
So long story short, I went back on the IVIg and, over a few years, just kept doing better and better.
What really kicked it into high gear seemed to be, ironically (or not), exercise. At one point, maybe a year (I can’t remember) into this new course of infusions, I again felt slightly but not significantly better, but I figured maybe I should try an exercise program. I can't remember exactly what I was thinking – some combination of "maybe the psychosomatic people were right all along" to "maybe with IVIg I can do this" to "this isn't going to work and I'm going to prove my pessimism about my disease right." I started seeing a PT in David Putrino’s group. It was some sort of modified Levine or CHOP protocol, frankly I found it hard to differentiate between GET. But it worked. I felt a lot better as it ramped up and I started doing body weight exercises. It was almost the immediate boost of energy that I expected from IVIg but didn't get, at least at the start.
So I stuck with it until it advanced to body weight strength training, and kept on with the IVIg. At some point I actually increased my dose to 2g/kg/mo. (I switched to Dr. Mark Gudesblatt on Long Island, who both allowed me to do infusions closer to home and was into high doses), and started doing very real strength training, with weights. At some point I started riding a bike again. By this point I was actually exercising. Maybe there was something special about the gradual ramp-up in the beginning under the PT's supervision that made it all work better than it did when I was exercising totally unmedicated back in the late 2010s, but that seems hard to believe this many years on from it. I think the IVIg just allowed me to tolerate the same exercise I was doing before.
It took years, but I am about 80-90% back to normal now. I exercise a good amount (about 40 minutes of weightlifting around five times a week, and another two or three hours of riding a bike). I work a full-time but pretty demanding WFH job. I almost never get so tired that I need to take a nap, and I only very occasionally experience a very mild form of brain fog. I can stand in lines for an hour without feeling bad. The peripheral neuropathic symptoms (tingling and numbness in extremities) were never very bothersome, but those improved a lot. I cook fairly elaborate meals twice a day, with a lot of standing. I sleep around 9-9.5 hours a night.
I definitely am not cured – I would say just receiving effective treatment. I have kept on with the IVIg infusions, plus a ton of pills (2x 180 mg Mestinon, 3x 2.5mg midodrine, 2x 0.1mg desmopressin). I still do not feel 100%, or like I am even really headed there. I still wake up feeling exhausted, though it fades within a few minutes. I have to sleep an hour more every day than I used to before I got sick. I can’t really vary my bedtime much. When I get up in the middle of the night to pee, I still feel like a drunken sailor from the POTS. I still feel kind of POTS-y if I eat a ton of carbs in one sitting. I notice that I sway and generally move more when I’m “standing still.” Sitting for a while, I still sometimes get that coat hanger POTS pain in my shoulders (which is immediately relieved if I lie down), so I still work lying down except for video calls (which are like three hours a day). If I bike a lot in a day, I do notice I sleep more.
I can’t prove that it’s the IVIg. I've been too afraid to play around with my treatment since I started feeling better, so I keep taking all of the pills and the IVIg and even doing 45 minutes of tVNS a day (which I suspect does nothing but it's cheap and easy and I was doing it when I started getting better, so I'm afraid to mess with it). I've never stopped exercising since I started for more than a few weeks due to injury or travel (I have this fear that if I kept it to "old man exercises" – walking, some light bodyweight strength training – I would feel even better, but I don't want to know that because I like real exercise!). It’s been really disappointing to see the failures of various immunotherapy trials, especially the Vyvgart trial (which I became so obsessed with that at some point I made touch with about a third or half the patients in the trial and got invited into the group where they were all talking to each other – whoops, probably not great for the blinding!) and the ones in Germany. Nevertheless, since I was so active for a point in patient circles (though not much on S4ME), I wanted to share my experience.
I feel a little guilty for getting better and disengaging from advocacy and patient communities, but if you're on Bluesky, I am there at
postviraltrials.bsky.social, still hitting repost when I see something about trials.
