POTS Advocate | “Realize that people expend tremendous energy merely to be normal” - from Camus
Joined September 2016
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It's happening! My daughter Annelise (Li) will be treated in Japan in August for debilitating POTS, dizziness, neuropathy, headaches, brain fog, GI disruption, and crushing exhaustion, with a long history of hEDS and MCAS issues. DFPA filtration for removal of amyloidogenic clotting, and restorative treatment for the vascular system, and heart, brain, and organ tissue. Bravest and strongest person I know (other than her Mom). Bless the McCairn-Edogawa team. 🙏
As a father with years invested to help my own daughter, patients have to consider IVIG, H.E.L.P., HBOT, EBOO, TPE, triple anticoagulant, Cold Laser, Lyme, EBV, etc, etc, etc. Treatment effectiveness aside, no solution or program offers the transparency and support of the McCairn-Edogawa program. Ken Evan’s group of 50 or so prior, current, and prospective patients is the most informed, open, and supportive patient advocate group I ever found. They know a lot about all of the above, not just DFPA and SGF, and are fully informed and engaged when anything unfortunately goes wrong. It’s hard to understand why this program is held to a higher standard, when its transparency is already higher than anything else.
I wish it were easi(er), cheap(er), saf(er), and less demanding. But lack of transparency is not of its challenges. Everything you could possibly want to know, as a prospective patient, is readily available.
Anyone not satisfied with the current situation is free to just wait, and many are.
There is a whole bunch of libeling going on, that's for sure.
The figure you show is the measure of spike AB measured at pre vs post treatment, and doesn't include more recent patients.
We have had 2 complete non-responders, then there is those with confirmed CSF leak, and around 10 out of 65 who have reported loss of efficacy over around a 6 month period.
For those that want to, we are arranging for discounted treatment costs to try to extend out the therapeutic window, so far many of those who have a waining initial positive response are wanting the repeat booster treatment.
Dave is wrong on virtually every count, despite him talking to numerous patients in that space who were left to rot and who have had their lives restored by our treatment.
He seems more concerned about dank-memes than patient wellbeing, which shows he cares little for actual patient welfare/results. And more about virtue signalling.
Pity as I thought about offering him treatments, if he could get to Japan, after the space, as I actually found him a reasonable host, unlike his cohost, and his desperation at his current state seemed genuine.
But seeing his behavior post that space, I'll not bother. His loss, and my saving of research overheads which can go to funding the next lab hardware purchases we need. To better understand the spectrum of responses.
With the valiant OPEN LETTER, an all out WIN-WIN to move us ever closer to the inevitable acknowledgement of the Covid/MRNA truth, I reissue this call for RFK to resign now before it is too late.
HHS Secretary Kennedy, please resign now. Time is running out.
Many of my MAHA friends swallow the gaslight that you are fighting for important gains at great personal cost. But if we have learned anything, it is that truth matters.
There have been no gains on vaccines. The schedule is as large as ever, not one vaccine has been eliminated, kids are required to take them all to attend school, catch-up vaccines are common, religious exemptions are being defeated, docs still get paid extra to cancel kids who do not vaccinate, thimerasol is still being administered, Covid vaccines are recommended for pregnant women, people are being required to take the Covid vaccine, and MRNA is expanding into the flu shot and other vaccines.
Those killed or injured by the Covid pathogen or the vaccine have zero treatments, and not one word of acknowledgement from you or Mr. Battacharya. Not one word. Nothing about abnormalities in the blood. Nothing about the people whose lives have been completely destroyed, apparently for the rest of their shortened lives if they wait for NIH to even look into it.
The work on psychedelics and "right to try" are to fast-track new drugs into the pipeline while skipping safety trials, and protecting pharma from liability. New pharma revenue gets the focus it needs.
Where you are doing your "best work", we have full manufacturer immunity for glyphosate, increasing MRNA in the food supply, and "cultured protein" hidden in soup cans. One of the best superfoods, quality beef, is now too expensive for some to eat. The dyes might slowly come out of the food, or they may not. We'll see.
These few gains are pennies to sacrifice one of our movement's top voices. We need you back with us. Life expectancy has been declining since 2014, while disability continues to rise. These are tokens that will not slow these trends.
If you stay in place until after the midterms, they will toss you out after they have feasted on your credibility, and rendered you ineffective. You will become the Dan Bongino of MAHA.
BTW, where is your podcast?
Please Mr. Secretary, hurry before it is too late.
We met Ben in Japan and pray for him still. Such a long hard journey for so many. My daughter Annelise’s legs, after 2 DFPA and about 10 SGF treatments.
After 1 DFPA and 3 SGF, thank you to Dr. Kato (@shonyan), Dr. McCairn (@KevinMcCairnPhD), and Charles Rixey MA, MBA (@CharlesRixey) for your guidance and care!
This is a repost with fewer pics because some people can’t open the original.
A midway update on Patient #54 Annelise, being treated under the McCairn Edogawa protocol in Tokyo. She is the young patient mentioned by Dr. McCairn during his Aug 27 stream and Cafe Locked Out podcast.
x.com/KevinMcCairnPh…
She has congenital hEDS and bladder exstrophy, with severe POTS and MCAS for more than 15 years, and worse since 2020. She is progressing very well after 2 weeks. Some symptoms are gone, the worst POTS symptoms have improved, and the MCAS is TBD as she is being ultra careful with food and environment during treatment, but still flares up.
We won't really know until she eventually returns home. But for someone who tried so hard, for so long, with no results at all, this just feels in this moment like a new life for her is possible, even if some symptoms remain.
Given that nothing else has worked, she plans to continue with the program for 2 more weeks.
The pictures is before Japan, and after 2 weeks of treatment.
These treatments are painful and physically demanding, and she struggled early to get where she is.
Based on imaging here at Edogawa hospital, she probably does not have the heart, spinal cord, or brain injury problems that affect some other patients. It is humbling to see people who are so injured so long, still strong enough to do what is necessary, knowing that it likely will not fully restore their health.
It is also expensive. Please support those that need and ask for funds.
For the hEDS/POTS, long Covid, and vax injured communities, hope is being built in Tokyo.
A midway update on Patient #54 Annelise, being treated under the McCairn Edogawa protocol in Tokyo. She is the young patient mentioned by Dr. McCairn during his Aug 27 stream and Cafe Locked Out podcast.
xitter.cf/KevinMcCairnPhD/status…
She has congenital hEDS and bladder exstrophy, with severe POTS and MCAS for more than 15 years, and worse since 2020. She is progressing very well after 2 weeks. Some symptoms are gone, the worst POTS symptoms have improved, and the MCAS is TBD as she is being ultra careful with food and environment during treatment, but still flares up.
We won't really know until she eventually returns home. But for someone who tried so hard, for so long, with no results at all, this just feels in this moment like a new life for her is possible, even if some symptoms remain.
Given that nothing else has worked, she plans to continue with the program for 2 more weeks.
The pictures of her legs and face are before Japan, and after 2 weeks of treatment.
The other picture is during filtration, but don't let her smile fool you. These treatments are painful and physically demanding, and she struggled early to get where she is.
Based on imaging here at Edogawa hospital, she probably does not have the heart, spinal cord, or brain injury problems that affect some other patients. It is humbling to see people who are so injured so long, still strong enough to do what is necessary, knowing that it likely will not fully restore their health.
It is also expensive. Please support those that need and ask for funds.
For the hEDS/POTS, long Covid, and vax injured communities, hope is being built in Tokyo.
Live August 27 xitter.cf/i/broadcasts/1yJAPwqLQ…
Please help Kira pull together what she needs for this procedure that has already changed life for so many. Not a guarantee, but the best chance she has.
75% there. Thanks to everyone who’s given or shared, I’m most of the way to $8,500 for the McCairn-Edogawa protocol, a treatment that could change everything for me.
If you can help close the gap, or just share this with someone who might, it would mean a lot.
People this is not the beginning on justice. This is man whose job is to protect crimes from being discovered, continuing to do his job. He will spend little to no jail time. The cover-up is being maintained in full view for you to see.
Patient #54! My daughter Annelise started treatment today under McCairn Edogawa protocol. We won't be posting interim results on X.
But to document her starting point, she has limited mobility, syncope/dizzy/fainting, HR/BP/BG swings, heat/cold intolerance, tremors, peripheral neuropathy, GI dysmotility, severe food allergies, nausea, brain fog, migraines, concussions, ocular auras, elevated eye pressure, easy bruising, frequent infections and profound exhaustion.
She has to stay home some days, but most days she works 3 hours at her retail bookstore. She was an opthamalogy nurse, before.
There are so many and this is so tragically difficult. When these Japan patients ask for financial support, please give.
HHS Secretary Kennedy, please resign now. Time is running out.
Many of my MAHA friends swallow the gaslight that you are fighting for important gains at great personal cost. But if we have learned anything, it is that truth matters.
There have been no gains on vaccines. The schedule is as large as ever, not one vaccine has been eliminated, kids are required to take them all to attend school, catch-up vaccines are common, religious exemptions are being defeated, docs still get paid extra to cancel kids who do not vaccinate, thimerasol is still being administered, Covid vaccines are recommended for pregnant women, people are being required to take the Covid vaccine, and MRNA is expanding into the flu shot and other vaccines.
Those killed or injured by the Covid pathogen or the vaccine have zero treatments, and not one word of acknowledgement from you or Mr. Battacharya. Not one word. Nothing about abnormalities in the blood. Nothing about the people whose lives have been completely destroyed, apparently for the rest of their shortened lives if they wait for NIH to even look into it.
The work on psychedelics and "right to try" are to fast-track new drugs into the pipeline while skipping safety trials, and protecting pharma from liability. New pharma revenue gets the focus it needs.
Where you are doing your "best work", we have full manufacturer immunity for glyphosate, increasing MRNA in the food supply, and "cultured protein" hidden in soup cans. One of the best superfoods, quality beef, is now too expensive for some to eat. The dyes might slowly come out of the food, or they may not. We'll see.
These few gains are pennies to sacrifice one of our movement's top voices. We need you back with us. Life expectancy has been declining since 2014, while disability continues to rise. These are tokens that will not slow these trends.
If you stay in place until after the midterms, they will toss you out after they have feasted on your credibility, and rendered you ineffective. You will become the Dan Bongino of MAHA.
BTW, where is your podcast?
Please Mr. Secretary, hurry before it is too late.
Congratulations to Dr. Erica Schwartz on your Senate confirmation as the next Director of @CDCgov.
Dr. Schwartz is the most qualified leader ever nominated for this role. She brings decades of experience as a physician, public health leader, and public servant committed to protecting the health of the American people.
I look forward to working with Dr. Schwartz to restore public trust, strengthen the CDC's core mission, and Make America Healthy Again.
Dean Cheramie retweeted
Some patients are out to a year or getting close and doing very well, we have a couple that by the sounds of it could do with a week top up treatment. We have found around a 10% cohort who have a consistent blunted response. But they are all linked to a specific CNS structural abnormality, but they do still respond, and some needing top up form part of the identified 10% CNS structural pathology.
We recently had one adverse event of serious concern, but in a patient with severe Danlos Syndrome, so not so surprising considering the severity of the co-morbidity, it was handled quickly and they're back to treatment. So out of 50 patients, the results are looking good.
Anything that returns near to normal functionality for a year should be considered a major success, and we're well on the way to achieving that goal.
Dean Cheramie retweeted
Tomorrow at August 6th 2pm PST | 5 pm EST, join Dr. David Putrino, Dr. Lucinda Bateman, Dr. Jennifer Curtin, and moderator Charlie McCone for a discussion on how to best manage and treat post-exertional malaise (PEM). Learn about the different types of PEM, how to navigate a crash, and interventions for reducing PEM.
Sign up here: ow.ly/FLoJ50ZtEba
Can't make it? We will be posting the webinar recording on our YouTube channel after the event.
@PutrinoLab @BatemanHorne @jencurtinmd @loscharlos @patientled
Dean Cheramie retweeted
When I die please bury me with my medical records so god knows I've already been to hell.
My daughter is a patient starting treatment after MG. Yes she wants to be much better. But if she can get "only 20%" like MG, plus a chance for more, we would be on our knees with him in thanks and sign up 10 times over. This condition is awful.
I’ve been getting a lot of questions about how I’m doing, so I figured I’d share a quick update with some numbers. It’s still early, and I still have 7 SGF infusions and 1 more DFPA treatment left to go, so keep that in mind.
I’ve had 3 DFPA treatments, and today was my 14th SGF infusion.
I’d say right now I’m about 20% better.
The biggest improvements I’ve noticed are that my heart and body can handle more stress. I can stand longer before my heart rate climbs to uncomfortable levels, tolerate the heat better, and can do a little more throughout the day.
Before starting treatment, I’d say I was only 15–20% functional. Now I’d estimate I’m around 35–40% functional.
Some people might think, “Only 20%?” But to me, that’s life-changing. After trying countless treatments with little to no success, this is the first time I’ve seen meaningful improvement. That alone makes it worth it to me.
The big question now is whether these improvements will last. Only time will tell.
I’ll post a full video update once treatment is finished. Until then stay tuned 🙏🏽
P.S. My GSG link is in the comments for anyone who would like to support my journey. Thank you to everyone who has helped me get this far. I truly appreciate every single one of you. God is good ❤️🩹
Houston, we have admitted we have a problem.
And really great to see this …at last…cambridge.org/core/journals/…
Finally after years of research and proof, after thousands of patients have been treated with expensive and drastic triple anticoagulant and plasmapheresis therapies around the world, a recognized journal accepts a paper stating that amyloidogenic aggregates exist in the blood of patients with Covid or vaccine injuries.
Houston, we have admitted we have a problem.
cambridge.org/core/journals/…
These ladies, Kelsey and April, are beyond strong. Because they have no other choice. Please help them afford the full complete treatment, so they have the possible chance.
I’ve been keeping this quiet until April was ready to share her story herself, but now that she has, I wanted to ask for your help.
This week has been one of the hardest I’ve experienced since coming to Japan.
My friend and roommate, April, suffered a serious complication during treatment and has been hospitalized with a collapsed lung requiring a chest tube. I’ve been by her side as much as I can, trying to advocate for her while also being sick and undergoing my own treatments. It’s been emotionally and physically exhausting, and I’m so happy I was able to be support her.
Despite everything she’s facing, April continues to fight with incredible strength. She could really use our support right now.
If you’re able, please consider donating to her GoFundMe. If you can’t donate, sharing her fundraiser would mean just as much. Every share gives her story a chance to reach someone who may be able to help.
Please also keep her in your thoughts and prayers as she continues to recover.
Thank you all for supporting both of us during this journey. Your kindness has meant more than you know. ❤️🙏
April’s GoFundMe: gofund.me/99f344fc4
#LongCOVID #ChronicIllness #MedicalFundraiser #SupportOneAnother #HealingJourney #Hope #PrayersNeeded #CommunityStrong #LongCovidRecovery
