Apheresis Survey

On my Facebook Group, Long Covid Apheresis Community USA, I recently conducted a small survey. Tom Bunker helped me create the it. We have 27 responses, with 3 people having taken the survey twice. Below please find the data & responses to this survey.

Some of the highlights include:

• 21 people have done H.E.L.P. Apheresis, 3 EBOO, 2 EBO2, 2 InusPheresis, & 1 LDL Apheresis.
• 18.5% got much better from their Apheresis Treatment, 33.3% got a little better, 22.2% stayed the same, 11.1% got a little worse, 7.4% got much worse, 1 said better for 10 week and then symptoms returned, and 1 said lungs much better (less breathing problems), but now suffering severe MCAS.
• 37% 1-10% better after their Apheresis Treatments, 18.5% 11-20% better, 7.4% 21-30% better, 3.7% 31-40% better, 3.7% 41-50% better, 3.7% 71-80% better, 7.4% 81-90% better, and 18.5% felt worse.
• Gains were long lasting in 51.9%.

As you can see that from these 24 people that have taken the survey, most have seen a benefit from their Apheresis Treatments, but some do feel worse. From the cases I am privy to, those that feel worse have for a “short term,” typically.

One major issue I foresee with the benefits sticking, or not, is that reinfection is such a common thing, in spite of what the testing says. One could make major headway with Apheresis, only to be reinfected. This makes me nervous with any place you have to fly back from while the COVID Infection Rate is high, rules are more lax, and the variant is highly infectious (like Ba.5 is). Additionally, each Apheresis has its strengths and weaknesses. For instance, H.E.L.P. Apheresis is tremendous at helping people who have clotting. If you have additional problems, it may work much better in conjunction with another treatment. Also, one can do a treatment that is doing something good, but it’s too strong at that moment or causes a herx-like reaction, so you feel worse. The Lymies know all about that. Timing, reinfection, and what issues you suffer from all matter a lot.

If you have any questions, feel free to ask.

Comments from Survey Takers:

• Felt after first and third EBO2 I got reinfected. After 3rd for a few days felt much better, until COVID probably hit me again (felt it in my chest, etc.). After 4th EBO2, felt a moderate improvement. 300-400 CCs of mostly inflammatory proteins came out of me into the container. Was slightly yellowish, which may indicate some infection. My body always loves Ozone.
• Significantly lower ALT.
• No new infection since EBOO. Pleurisy pain is ongoing, Post Exertional Malaise worsened, Headaches worsened, shortness of breath only improved with beta blockers, hair loss is ongoing, headaches worsened, GI issues worsened but are currently stable.
• Have better circulation and a little less brain fog and a little more concentration.
• Symptoms went worse with every Apherese. HBOT made it even worse. After the 3 treatments I decided to do a break. But then i got reinfected. Now it’s worse than before the treatments.
• Fatigue and energy worsened some compared to when I finished my first round of 5 help sessions last year.
• Caught Omicron Feb. 2022, full body rash not experienced with Wuhan infection. Passed in 6 days, felt more tired. Back to pre-Omicron level of long haul IMO. Felt HELP apheresis worked, it just took time to see results. Also do not think it cleared virus, just improved me.
• Most significant improvement is that I need less sleep and feel more rested.
• Did 6 complete HELP apheresis, 2 failed due to problems with needle etc. Last treatment was 2 weeks ago, have had a few days I felt a little bit better, especially less chest pain but also very bad days when I was bed bound due to PEM. It’s too early to tell if there are more days when I feel a little bit better, still hoping for a delayed response.
• Rest and no pills would have been the best.
• My muscle pains eased slightly for like a week or so. Then came back. So overall the apheresis had nil impact on my health and was an expensive mistake.
• Overall I’ve seen very minimal improvements to my health over time, and I am still having major difficulties due to daily symptoms. I don’t know that anything other than bed rest has had any major impact on symptom improvement. Without sounding overly dramatic, I still cannot exercise, work, or even just exist anywhere near my previous ability.
• The HA removed toxins and molds from my blood which brought me back to pre-COVID health. It put the Lyme and Mold tox symptoms (what was causing Long Haul COVID) into remission for 10 weeks. The use of a newly purchased sauna released all the toxins in my body again and the ‘LHC’ returned. Since starting on the mold toxicity protocol in January I have no symptoms of mold tox (or LHC). Help apheresis was a learning tool for me and nothing more. The mold protocol has achieved better longer lasting results then the HA treatments. Total waste of money.
• I got Inuspheresis to help overall immunity. However, I was dealing with very aggressive giardia parasite and the symptoms came back strongly after inuspheresis as I hadn’t killed it properly. Then i had to take immuno suppressive drugs to kill it then epstein barr flare got so much worse. So because of this inuspheresis has been hard to monitor. I was having nerve pain in my face before it though which has gone.
• No improvements yet after 8 HELP apheresis sessions but hoping to do 5 more before returning home. Heart palpitations and MCAS flares are worse and more frequent since starting the apheresis. Also started clopidogrel and eliquis around the same time as apheresis, and taking extra alprazolam on treatment days. This is after the first two apheresis attempts were unsuccessful- the first one because of because Silke pulled giant clots out of my veins and said it would clog the machine if she were to hook me up (hence on blood thinners now) and the second one because my veins weren’t cooperating (hence taking extra alprazolam on treatment days now).
• Many symptoms were reduced or disappeared from doing the HELP Apheresis treatment, while others stayed the same. The symptoms that remain unchanged seem to me to be typical virus symptoms (fever, flu like feeling, swollen lymph nodes etc.). To me this indicates that we are dealing with a combination of persistent virus (or reactivated virus), autoantibodies and blood clots, and treating all three is important.
• After third apheresis it was like a flip off a switch and majority of symptoms disappeared. So I was tempted to go for a walk which I did. After first walk I felt amazing. So I went for another and crashed hard. I was hoping the last, fourth apheresis, would take me back to where I was after third one but that did not happen. So I regret doing the walk now but perhaps it would just happen later as I only had for Apheresis. I might try more sessions when I have funds and time from work.
• I think, HELP apheresis triggered my now severe MCAS, because the treatment is very exhausting for the body. Though my chest pain has almost gone. I think you have to be very careful if you suffer from fatigue.
• Big relapse after Help apheresis. I was feeling a little bit better each month and was back to about 75%, and after 2 treatments am now feeling like i did 9 months ago, when i was at my lowest, so probably to 45/50%. Supposedly its thé treatment making me tired, waiting and resting to see. Will fill out another survey in 3 weeks to inform.