POTS Advocate | “Realize that people expend tremendous energy merely to be normal” - from Camus
Joined September 2016
- Tweets154
- Following204
- Followers386
- Likes37
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!
Jay B, you stated in your Jan Jekeliek interview that NIH was working on research for the Covid and vaccine injured. This was false, an outright lie. Give one example. NIH has done nothing for the injured, except to seed doubt that they exist. No ICD codes. No autopsies. No guidance. Now you explain that resources allocated for Health will be allocated toward more War technologies. Have we not been harmed enough?
Yes Annelise is a unique case with congenital hypermobile EDS (hEDS) and POTS and MCAS long before Covid, and symptoms got worse after 2020. Long Covid affects the vulnerable.
Annelise had one J&J vaccine and several bouts of Covid. In her case, the timing and development do not point to a clear driver.
Ryan she is on a very strict diet due to MCAS, and we have been able to eat at restaurants and buy prepared food. It takes a lot of advance research, and some extra walking, but it can be done.
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.
This is not the beginning of justice. This is the guy whose job it is to protect Fauci, continuing to do his job. He will get little to no jail time. The system is protecting itself in plain view for you to see.
Dr. Redfield is excellent and will give you honest info. He will not dismiss it. He works with Dr. Vaughn sometimes, but there is a long long wait list to get into that program. Just keep in your mind that Redfield doesn’t have access to the treatments that were developed by Dr. Vaughn in AL or Dr. McCairn in Tokyo. So keep yourself informed as you are doing now. You are putting yourself on the right track Cody. Be persistent and patient, at the same time. This is very real and there many others like you trying to get well again.
Each patient has a unique set of symptoms. This overwhelming fight or flight is common, but it is not something my daughter has. It is not just you. If you message me, I can refer you to more informed doctors. In Maryland I would see Dr Robert Redfield if I could.
Hi Cody, really good question. We know they both exist, and it may seem that the little ones combine into the big ones, but they may not be the case. I look at things from the patient’s point of view. Either the little ones or the big ones can be causing your POTS. The littles ones by clogging the capillaries, or the big ones by restricting blood volume returning to the heart. Or maybe you have no clots at all, and your POTS is caused by something else. There are a few things you can do to make life a little better. Lots of water, and extra salt, mainly. But a lot of people are struggling to get the medical care they need. This is not caused by your nervous system or anxiety. But you are the one that has to live with it, and stress can make your symptoms worse on any given day.
Hi Cody I am so sorry to hear of your medical struggles.
I am not a doctor or researcher, just a Dad of a patient like you, that tries to learn everything I can. POTS almost always has multiple factors, and it is a challenge to figure out which one is the main driver for each patient. When the excessive and abnormal blood-clotting exists (and it does for my daughter), this points to endothelial damage, though we have not measured it directly. We see that patients with lots of blood clotting have POTS, and the POTS will often improve (but not fully) when the blood clotting is reduced. There are evolving theories and complex illustrations, but that is the state of the science so far.
POTS can be caused other things that have nothing to do with blood clotting or endothelial damage. Each patient is different.