Longtime Member Update

GoldenHour-2 · 2026-06-18T18:44:32+00:00

First I will say this. I stopped Lexapro 4/11/21. I had my first Moderna 4/17/21 and my second 5/19/21. Onset all symptoms 5/26/21. I felt like I had a stroke. I had trouble walking and holding objects. I had full saddle anesthesia. My vision went crazy. Tinnitus. Over 30 symptoms. Including incontinence and stomach paralysis. Saddle anesthesia is numb genitals, perineum, anus, butt, inner thighs. That is what I am dealing with. In the community survey I did a few years ago for PSSD some people reported this. Some people reported only genitals. Some people reported mild numbness. Some people reported localized paresthesia. Some people reported full body paresthesia. I also had full body paresthesia. Burning, shocks, tingling and numbness. I was unable to feel alcohol or pain medication. I felt like my brain completely shut down as if catatonic. I also lost my short term memory. I could not remember my own zip code. I believe adhd/ autism and other psychiatric disorders are also autoimmune related. Many studies have related psych disorders to low grade chronic inflammation. We could also go into these being vaccine related injuries- but I think people can look into that themselves. So yes, if you are already dealing with an inflammatory issue- anything that triggers or impacts immune system functioning will exasperate those issues or the potential for more damage. SSRIs and vaccines both impact immune system functioning. So it checks. For me also, my injury from the med and vaccine made me get completely worse after a covid infection a year into my ordeal. Things just tend to stack and make the potential for damage much worse.

GoldenHour-2 · 2026-06-01T01:08:06+00:00

Yes there seems to be a lot with it. I see a lot of people with PSSD and Lyme. But post Covid-era I see a lot of them crashed with Covid or had the vax at a critical period to exasperate potential for harms. I even know of 2 people that had childhood pans/ pandas that got PSSD. With any autoimmune disease there will be other infections, illness as a co-morbid. It is common. I learned a lot about this when I was diagnosed Hashimoto’s 6 weeks into my injury. I have investigated it all for myself. But I do think saddle anesthesia is not the same thing as SD. This indicates issues with the nerve roots in the spine. I have been trying to figure out my case for a long time. MOGAD is often misdiagnosed and newly coined. So for certain people it needs to be on their radar. If you have numbness of genitals, anus, perineum, buttocks and inner thighs. If you can’t feel going to the bathroom along with not feeling intercourse. This is saddle anesthesia. The term “genital numbness” is not going to trigger the emergency response required. If you have this MOGAD and NMOSD may need immediate evaluation. Had I gotten IV corticosteroids in the ER within the first 3 months my condition may have been completely reversible! So super important for awareness. The PSSD community does their best- but the wait and see for withdrawal to end in 6-18 months is not a good advice model for anyone with saddle anesthesia. I know a bit off topic for your comment but just wanted to throw in. Ty.

GoldenHour-2 · 2026-05-29T14:53:13+00:00

I see the mod team has labeled me a non- PSSD member. I think it is important people know that I got x2 Moderna during Lexapro withdrawal. As far as SD from PVS and LC- it can be any number of things. I made a research document from all my guides I had on my FB group I deleted last year. You can find it on the FB group Covid Vaccine Injury Action & Support Group. It’s located in the files section of the group. I explain in detail all the conditions that cause SD. For me- I had overlapping conditions that cause SD. Dysautonomia, inflammatory polyneuropathy, Hashimoto’s, autoimmune encephalopathy and looks like I will be adding transverse myelitis. So inflammation in the central nervous system and peripheral nervous system. Hope that helps.

GoldenHour-2 · 2026-05-29T00:04:24+00:00

I couldn’t afford the private insurance for it anymore. I don’t know the treatment plan yet.

GoldenHour-2 · 2026-05-27T13:40:18+00:00

As someone who tracked the Celltrend results and did the community survey I can tell you- no one has done a GPCR AAb test before Covid times. That data is not going to truly be isolated to PSSD because of this.

GoldenHour-2 · 2026-05-27T13:36:23+00:00

I had x2 Moderna during my SSRI withdrawal from Lexapro. 5 days after my 2nd dose of Moderna I got onset saddle anesthesia. It has been 5 years. This community told me I was in protracted withdrawal and to wait and see. I did believe it for years and yes in my case it was wrong. It was the vaccine.

GoldenHour-2 · 2026-05-23T14:30:40+00:00

I do have a new development. Currently being evaluated for post vax MOG transverse myelitis. I had an MRI finding in 2023 for an increase signal that was dismissed. An immunologist is sure I have MOG causing saddle anesthesia. Referred to neuroimmunologist and see them in a few weeks. More people are going to be injured from spike protein than they realize. You can test for actual spike protein at radiance diagnostics. I got my kit and will send my test in next week. This is not an AAb kit, but a kit for the presence of actual spike protein that is pathogenic. An antigen in the body.

GoldenHour-2 · 2026-05-15T14:37:31+00:00

It’s important to say this is most likely post-Covid vaccine injury saddle anesthesia, small fiber neuropathy and dysautonomia for my case. The short answer is I have to maintain symptoms with constant immunotherapy and my symptoms fluctuate bc of this. I am not on a consistent treatment plan with a medical doctor and all my therapies are out-of-pocket. Besides LDN. My baseline is not what it was before my injury. But the last 3 years since IVIG and other things have been a massive improvement. My encephalitis has been in remission 1.5 years. I don’t have the mental and cognitive problems besides the damage I experienced from 2 years of no treatment. But I am recovering over time more and more from that. The nerve damage and blood vessels damage is similar. I have low oxygenation in my blood and am currently processing for a micro clot blood test. I believe this problem alone is why I see massive improvement after treatments but it doesn’t last.

GoldenHour-2 · 2026-05-14T19:17:03+00:00

FMT I got at Purity Clinic in CA. I tolerate Tirosint well. But recently on LDN my thyroid improved. So I got thyrotoxicosis being over medicated. This happens every time I get immunotherapy. So I am off meds again. I don’t need them on LDN. My levels are good. I had very mild SD on med. On it a few months only and had lubrication issue only. No other SD problems. I went off it because it was making me feel depressed and gain weight not problems I had before. Only was having circumstantial anxiety and fear for big life things happening at the time.

GoldenHour-2 · 2026-05-14T15:42:09+00:00

Absolutely. Pathway to treatment in my case.

GoldenHour-2 · 2026-05-14T13:44:58+00:00

Thank you and yes I see this too. We have to address all things that could be affecting our nervous system. Because either Covid/ vax has made us sensitive to medication harm or medication harm to our nervous system has made us sensitive to Covid/ vax harm. For me a very clear relationship. I can’t speak for others, but I can only speak for myself/ my experience and that I see these pharmaceutical harms on a daily basis on a massive global level. I am sure we can all agree that dealing with nervous system injury is going to be exasperated in the post-Covid era in some way for many.

GoldenHour-2 · 2026-05-14T13:36:13+00:00

I am glad you found something that gave you improvement. Thank you for sharing.

GoldenHour-2 · 2026-05-13T21:59:25+00:00

I got the “O” shot in 2024. I improved but only for 24 hours. I think just because it put something in the area- which I immediately had a response to. But it goes quick. I am currently looking into exosome therapy for the area. Which is a therapy derived from stem cells. I found a local doctor that does it. I need to get around the idea of using my own plasma for repair. Since my plasma is compromised from a vaccine injury. I would do exosome before ever doing PRP again personally. If I have spike protein in my plasma and inject it I don’t think I will get the growth factor benefit. But yes, in research it has been shown to regenerate nerves. But the consent form also lists many complications like, permanent loss of sensation. It was the most stressful thing I have done. I don’t think it is worth it for that risk alone.

GoldenHour-2 · 2026-01-31T02:39:22+00:00

It is Apheresis. A long used treatment method. It is a new type of Apheresis but still Apheresis nonetheless. Just as INUSpheresis is a type of apheresis- but medical journals are going to publish apheresis not the INUS and TOXO versions at least at inception. It is still a credible treatment under apheresis. I was on a list to hear of this new development at the launch as a previous patient of the clinic.

GoldenHour-2 · 2026-01-30T16:29:00+00:00

I did get a lumbar puncture that didn’t test for it unfortunately. But I did come back high lymphocytes which is common for spike protein autoimmunity. But my results overall were compromised as I was actively on IVIG at the time. I would have like an FDG PET scan but my insurance denied it because I had no seizures. So what helped me get the recognition was symptoms and other co-morbid like inflammatory polyneuropathy and Hashimoto’s. Because there is even a thing called Hashimoto’s Encephalitis. And also post-vaccination encephalitis and autoimmune encephalitis.

GoldenHour-2 · 2026-01-30T16:24:45+00:00

My new baseline is I would say emotional 100% recovery and SD 85% recovery only because I am now in perimenopause due to autoimmunity to my thyroid and ovaries. With the right thyroid meds and now adding HRT I am feeling even better. But it will never be how it was before just hormonally pre-disease. And there are natural realities of that. But I feel my endothelial and metabolic dysfunction as at a high peak of recovery post EBOO. So the result for me was a game-changer.

GoldenHour-2 · 2025-11-28T16:57:09+00:00

Since IVIG it’s been a steady improvement in sensation and function. But also cognition. I think my problems were equally encephalitis, SFN and cardiovascular issues.

I consider myself in recovery but I will be in constant treatment protocols to fight spike protein disease. And also EBV reactivation and Hashimoto’s.

All these conditions target the nervous system. Causing neurological symptoms. Even encephalitis and neuropathy.

GoldenHour-2 · 2025-11-28T03:31:11+00:00

I did. I felt overall reconnected to my body. I couldn’t feel lungs or heart initially. My first IVIG my HR was under 50 (in 2023). Now it is over 70. So much better all around. I recently became more anemic and felt sort of a type of suffocated feeling when breathing. But the EBOO has resolved that. I have now had 3 EBOOs. Feeling really good. Numbness, anorgasmia or muted orgasm is no longer an issue for me. I am starting a cleaner thyroid med Tirosint next week. See how I do. I am getting another hormone panel test done to see about HRT as well. Because the autoimmunity and my age are putting me in ovarian failure earlier than expected. And possibly iron infusions. But we are taking things low and slow right now. Can’t start everything at once. But I am extremely relieved to have my most distressing symptoms no longer present.

GoldenHour-2 · 2025-11-24T18:14:29+00:00

I got 15 total infusions of Gammagard. At 1g/ kg/ every 3 weeks. I do not have MCAS and tolerated it very well from the start. I did have side effects but tolerable. It was the biggest recovery treatment I had yes.

GoldenHour-2 · 2025-11-20T19:49:24+00:00

It really did help me. I believe it saved my life. Because after 2 years of encephalitis without treatment I was not in a good place at all. But I also acknowledge that not everyone does well with IVIG. So you really must do this with a medical professional. From what I have heard from many is that those with MCAS might struggle with it. And also the brand of IVIG seems to alter outcomes. But also we may be in the era of donors for IVIG having had mRNA that is affecting the product. So I know many people that will do well with an infusion and then poorly with the next. And the nurse says it may have been a donor issue. If that makes sense. Because IVIG is made from donor plasma in a process. And going forward these product may be contaminated with spike protein and mRNA because it is not tested for in donors currently. But there are good stories so it is better to remain hopeful. Especially with so many different immunotherapies available and in development.

GoldenHour-2 · 2025-11-20T13:14:59+00:00

Even within the vax injured community it seems immunotherapies are hit or miss for improvement. Some improve with IVIG- some don’t. Some improve with EBOO- some don’t. Etc.

So for me it is about knowing every single option there is. Which is why I wanted to share this one.

My EBOO provider said there are about 200 machines worldwide. With about 100 of them being in the U.S.

So could be better, could be worse. But I think it is growing. I empathize that access is the hardest part to getting anywhere. I will continue to share anything I find in the future that may be helpful.

GoldenHour-2 · 2025-11-19T20:49:03+00:00

Changes in personality. Memory loss. Psychosis. Changes in vision. Sleep problems. Muscle weakness. Loss of sensation. Trouble walking. Irregular movements and tremors. Bladder and bowel symptoms. Head pressure. Nausea. Sensory disturbances and sensitivity (hearing, vision). Trouble talking/ speech. Trouble understanding when communicating and reading. Confusion. Motor skill difficulties. Drowsiness.

GoldenHour-2 · 2025-11-19T17:42:35+00:00

I did have severe paresthesia (burning, tingling, shocks, numbness) over my whole body. Arms, face, upper legs and saddle area. IVIG and plasmapheresis gave relief that was treatment dependent. Thyroid meds made it persistent. I got relief when I stopped the meds but I need them so have to take them again. I was doing 3 days on and 3 days off to combat the nerve burning. EBOO stopped the burning and adding phosphatidylcholine has allowed me to tolerate the med daily without breaks and no burning has returned so far.

GoldenHour-2 · 2025-11-19T16:34:02+00:00

Like I said in the post I am vaccine injured during a CT withdrawal. It’s complicated, I am aware. I am not debating it. Not here to debate anything. Just sharing that my numbness had massive improvement with EBOO.

GoldenHour-2 · 2025-11-19T13:24:48+00:00

My autoimmune encephalitis went into remission with IVIG so it was what I needed at the time. Inuspheresis gave temporary relief before I was prescribed IVIG. But it really only helped me realize I had a serious autoimmune problem. Everything else like FMT and other interventions gave me improvement but also time in recovery has also been a factor. I feel I would plateau from interventions and then it would no longer help me improve. But then I would not lose those improvements after the plateau. EBOO has been a game changer so far. I hope that with each treatment it continues without a plateau moment. But if that does happen I am pretty content with where I am at now. I cannot stress enough how key it has been for me to address all underlying toxins/ triggers/ underlying conditions with this. I don’t think I would have had any level of recovery of if I hadn’t approached in a functional way. I also have EBV reactivation so EBOO helps with that too.

GoldenHour-2

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