@kenny I've had multiple blood tests but I'm not sure exactly what for but I complained about SOB when I first went to hospital so I assume they tested with that in mind
Not sure if there are data that shows those vaccine side effect long haulers are having milder symptoms when contacted with covid. Will be interesting to find out.
I am glad to hear your kidneys are fine! That is good news,
One less thing. I was due for my second a month ago, as much as it would help my work/economic situation there is no way I can do it. I still struggle daily with the one I had. This week has been a tough one. Last Friday-Monday I was elated, I was basically normal. I have no idea why but I woke up Friday morning and had no symptoms for 4 days. Tuesday though, I woke up and the dizziness, fatigue, intermittent neuropathy, and random anxiety had returned.It is very difficult to be patient with this process. I have to remind myself I am not even 2 months in and have already seen some improvements. I struggle to keep my mind from obsessing over this illness, wondering if its some kind of permanent auto immune issue like MCAS (mast cell activation syndrome). But then I see stories of people recovering in time without any meds or relapses even with heavy exercise and that just doesnt fit MCAS. I do seem to have some intermittent GI issues (seem to be directly related to the amount of turmeric I take), I consider the dizziness and neuropathy in my extremities to be a neurological issue. If the other issues are not related then MCAS is unlikely as it is a multi system problem.
Whatever this disease is, Im convinced it has a similar or the same mechanism as long covid. Its crazy to read long hauler forums, except for the origin the symptoms are exactly the same. The pattern of healing is also the same, sick, a little better, relapse, repeat- with most getting better in 4-8 months although some of them took almost 15 months to fully recover. It drives me nuts not knowing why though. Its like having a piece of popcorn stuck in my teeth and I cant leave it alone.
I have several appointments lined up with various physicians, I'm not really expecting to get any answers though. So far my doctors are nice and believe me, but they have no idea what to do about any of it. They literally ask me what we should do to treat it- could be worse I guess. Ive been debating if I want to try some fluvoxamine, or a steroid taper. Just in case it does turn out to be some difficult to shut down inflammatory feedback loop. It is hard to know if either will do much of anything at this point, but I doubt they would hurt. Ive also seen at least 2 people say they saw an improvement after giving blood- those people had cardiac issues though. Makes me wonder if there is some kind of circulating garbage floating around in our blood that we just dont get rid of as easily as some.
LH recovery is such a bizarre process. I saw this on another forum thought ya'll might like it.
Thank you me too.I also had 3 good days last week thought my mind was clearing and I was picking up too but then I seem to have lapsed,the cycles are crazy! Good get as many checks as you can for peace of mind.I've had some bloods done twice 2 weeks out and 2 months out and a kidney scan and all has been clear apart from the cyst,I've not really pressed for anything more as no doubt nothing will show.Update us any tests you have and what they say.
I've also read loads on Reddit there is a section called vaccine long haulers it's quarantined,the members are growing daily! Which other forums do you go on? It's as though we have all had a manufactured covid and are suffering long haul the same as those that have had the wild Cov,it's nagging at me too I just understand any of it.
Do you think once the blood has replenished in the body at the 120 day mark we will start feeling more better? I Guess we're just more delicate than others.
Yep that pic is very fitting,who'd of thought it just from a jab 🤦
Yeah, I am generally expecting any test I do to be negative- I still want to do them though for peace of mind and to establish a baseline. I've been on Reddit, Facebook, and there is actually a much smaller forum (40ish pages) on this site for neurological issues, muscle twitching, numbness/tingling ect, I see some folks from here over there also. At this point, I am inclined to believe all of my symptoms are neurological in nature.
Still anxiously awaiting results =(
(not a doctor,)- My current uneducated hypothesis: Given the general trend of improvement, hopefully the lack of any positive tests, and the reports from others who have gone ahead of us and been kind enough to report back, Id say it seems likely that my (our) systems just took a serious whack from the vaccine. My hypothesis is for whatever reason we had damage to our nerves. Ive read that spike proteins can cross the blood brain barrier. We also know spike proteins have an affinity for ACE 2 receptor binding, ACE2 is found in the brain, cardiovasular system, and in huge quantities in the intestines. These receptor sites appear all over the body and particularly along the endothelial lining (blood vessels). Furthermore, there has been evidence to suggest only 25% of the vaccine remains local to the deltoid the rest goes into circulation. The bodies vasculature goes from large major arteries and blood vessels to smaller capillaries. Capillaries are very small and thin so as to allow blood to "leak" out onto the surrounding tissues and dump nutrients. Blood typically moves slower in the smaller vessels (typically in the hands and feet). IF the MRNA for spike protein is in general circulation, it would most likely coagulate in the smaller vessels and would have a higher rate of infiltration there also because of the slower pace of blood flow. An endothelial cell that presents spike protein would be destroyed by the immune system. The white blood cells would congregate in these areas, and increase inflammation, also likely reducing circulation temporarily. In doing so they also release cytotoxic chemokines and cytokines (chemical mediators to tell the immune system to keep fighting). If these blood vessels which are already semi porous are damaged its entirely likely that they would leak this cytotoxic material out into the surrounding tissues, and also possible that if there was still circulating mRNA that this could also leak out into surrounding tissues, sort of a "splash over" effect.
What I am hypothesizing is basically that, highly mobile mRNA could have primarily or secondarily caused damage to various tissues based on distribution. This might explain why there is an "umbrella" of symptoms but each person has sort of a unique "finger print" of problems. IF my theory is correct, it should mostly heal over time, depending on the extent of damage, your bodies ability to heal ect- the time will vary.
There is a reason we have a blood brain barrier- its because the stuff in our central nervous system is incredibly important, and also sensitive. The brain is absolutely full of tiny tiny blood vessels, and it is entirely likely that we all "took a hit". My guess is this is where the brain fog comes from. Damage or inflammation to the vestibular nerve resulting in vestibultis can take months to fully recover from and matches many of our symptoms. Furthermore, its well know that VN can be caused from a viral attack.
With regard to nerve pain and muscle twitches- both can be caused from nerve damage AND can be healed over time. Diabetics have neuropathy, it presents in basically the same way as what I have- except I am not a diabetic and the onset for this was remarkably quick. The good news is that it can be healed- once the damage stops, some days or weeks after the repair begins. I think peripheral nerves can heal 1mm per week or something like that. I think it is interesting to note that everyone here has been negative for ALS ect with their EMG tests (the ones that test the big motor nerves). The nerves most people seem to be complaining about are small fiber sensory nerves which you guessed it- are not only the smallest and more likely to be easily damaged but ALSO are fed by very tiny capillaries and can take months to heal. In fact, pins and needles, "electric shocks", muscle spasms ect- which can be signs of nerve damage are also signs of nerve healing.
As far as cardiovasucular issues particular for folks with POTS I am not as familiar with the autonomic nervous system or how it is fed/distributed, but my journey through google hell has lead me to believe that generally peoples symptoms also improve with time- not always, but generally. My guess is that if I did some digging on this Id find a similar pattern.
I could be totally off base here. This is just a guess, and may not apply to everyone's situation. However, it does ease my mind and makes sense to me. Furthermore, it seems like a plausible answer for everyone else who has ruled out every other major issue (negative for auto immune markers, negative for ALS/MS ect) and is otherwise "normal" but still persisting with symptoms.
As far as the non linear healing goes, whenever the body is damaged it causes an inflammatory response. If there is already inflammation increasing inflammation will only make it worse. Like getting a sunburn on your sunburn. Furthermore, resting as much as possible, low stress, and trying to not push yourself too much is probably the best path if this is the case. Not doing so will likely result in relapses. I found a page on healing nerves, thought It might be worth a shot. https://healmynerves.com/blogs/causes-of-neuropathy/neuropathy-recovery-is-absolutely-possible .
Anyways, Its been a rough week. I have been riddled with anxiety and nightmares- reading about all of these diseases has almost destroyed me. I woke up this morning and I had this epiphany. It may be wishful thinking, but maybe not. Given enough time, almost everyone Ive seen who has posted after the first few weeks generally reports their tests are negative and their symptoms are improving slowly. This is not typical of any other known chronic or progressive disease. Unless we got some new weirdness (possible) it could be that the multi system issues we are having are a mimic for autoimmune issues because they were caused by our immune system attacking our own cells which were presenting spike proteins. WHY it happened to us is anyone's guess.
I hope I am right, and I hope you are all doing well =).
@hopetofeelbetter not yet. Still have loose stools and it'll be a week tomorrow on the probiotic. I read that quercetin helps with intestinal inflammation, so I may stop the probiotic and start that today along with zinc. I have been having less severe symptoms. Ear fullness and pressure has reduced. I still seem to get a mild headache in the evenings though. Slight twitching in legs. It's been 6 1/2 months since shot but 2.5 months since all these symptoms came on.
I heard mentioned by Dr. Malone yesterday something that no one is talking about, that is, why are Covid vaccines still being pushed, why do authorities seem frozen on the subject? He conjectured that it is simply HUGE amounts of guilt and bad feelings, knowing the level of destruction this is causing. That perhaps they are all simply deer in the headlights at this point, frozen with fear. Of course this is no excuse to injure or kill half the worlds peoples. But I do think he must have a point, humanistically, to describe this madness.
@jaydev55 it may take s little while to work i keep reading most people take the probiotic with pepcid or prilosec for 2 weeks to a month. After my test next week I will let you know what they recommend.
@jacquelynsauriol The reality of the situation is is that we - the people in this forum - are likely part of a very small number of people (in the grand scheme of things) who have had an adverse reaction. If it was a much larger number then it would have gotten out into the public because we'd all know someone suffering, whether it be a friend, family member, or colleague, but most of us don't.
Unfortunately if you gave the entire planet an apple, a small but not insignificant number of people would have a bad reaction to it while the overwhelming majority would be absolutely fine, and that's what's happening here; some have blood clots, some have heart inflammation, some have whatever it is we are going through now.
What really sucks for us is that so few of us are being listened to by doctors, partly because we're likely very small in numbers even if it might not feel that way, and partly because there isn't a tremendous amount of data on the vaccine yet, so we can be dismissed very easily.
@nick what can be causing the anxiety/ panic feelings and adrenaline rushes?
@nehru1 i test on Tuesday i had to be off of any medication for 2 weeks for the test to work and when i went to the ER they gave me a gi cocktail which is pepcid.
I chop the garlic and eat it in large quantities with salad and soups. It helps a lot! I felt very bad, garlic improved my condition!
@anotherone92 For me it is 6 people I know personally have had a reaction. In order of severity, they were Anaphalaxis, (paramedics called, EPI pen etc. person survived) SIRVA, Vertigo, Blurry vision with Headband headache, long term severe digestive issues requiring hospitalization, and acoustic episode that was unexplainable but dizzying. That is just 6 folks I know. So for me, it seems obvious the mNRA Covid vaccines are very very bad for us, especially women of lower weight.
It is only due to some inner alarm going off that I skipped my vaccine appointment, tried to cancel but couldn't. So glad.
@jacquelynsauriol I'm sorry to hear that, I hope that they all have or will recover