Hi All,
just want to update you on my last post above. I was getting better and I had about 4 or 5 months with barely any nerve pain at all. Sadly in the last 3 weeks I have had a relapse almost 9 months since my side effects started after getting the Pfizer booster. I’m obviously gutted that I have had a relapse in nerve pain and tingling pins and needles as I thought i was finally recovering. I’ve now decided to proceed with a neurologist for tests and investigations to get some answers and rule out any nerve conditions.
One piece of advice for you is to look into the carnivore diet. I have just started it 2 weeks ago - I have read so many good things about it helping to heal inflammation and burning nerve pain. I saw a video of a guy who had burning pain in his feet for years and was on a high dose of gabapentin. After a few weeks/months on carnivore his nerve pain had gone and he was off his meds. If you go on YouTube and search carnivore to help nerve pain you will see quite a few videos on it. It’s certainly worth a try - I’m 2 weeks in and already noticing some health benefits from cutting out the sugar and carbs!
i have read throughout this forum that people are suffering with relapses and I just wanted to be honest and update you all by replying to my own story. It’s a positive sign that I did have a few months where I felt better and almost 100% back to how I was - it helps me to think that if this was a serious nerve condition I had then surely I would be in pain every day and not have had a few months where I felt better.Hi. I have been wondering how you were doing and thought you must have been significantly better. Thanks for your post. Do you know what might have triggered your relapse? Have you caught the C virus by any chance?
I was doing okayish before I caught the virus, and I think I probably would have improved more if i hadnt caught C. Unfortunately C ramped up my symptoms and gave me more. Some of my symptoms then died down, but over time some have changed.
I went to a neurologist recently and was diagnosed with SFN, mainly because of the pain I experience and because I failed a temperature test. The neurologist put a cold instrument on my leg and then my foot. My leg felt it was cold, but my foot didn't. He tested my hands as well. So when you go see your neurologist make sure they do this test as well. Every other test I passed. He gave me a list of blood tests which I will find out the results soon. Some are autoimmune tests. Anyways I will update you and everyone if I find out something interesting.
I have heard about the carnivore diet helping some people who experienced elevated blood glucose levels by covid. Anti-inflammatory diet is supposed to be good for autoimmune. Have you lost any weight on the carnivore diet? This is my concern as I had previously cut out starch and sugar and lost a lot of weight.
Have you tried PEA (Palmitoylethanolamide)?
Anyways because you had a 4-5 month window of pretty much being you again, I think you will bounce back.
Can you please share about your neurologist appointment when you have it? Thanks
Hi @buzzgirl
yeh I got better from end March/ early April (symptoms started 10th Jan). My nerve pain had massively improved and was just left with groin ache and the occasional light pins and needles in my right leg. I relapsed about 4 weeks ago when I came back off my honeymoon. I think my diet has played a huge part in it to be honest. I got married in June and so in the build up to the wedding I was being strict with my diet - cutting carbs and all junk food and processed sugar. This may coincide with my symptoms improving at that time. Then my relapse came after returning from honeymoon 2nd week of September. On the honeymoon I was eating whatever I wanted - cakes, carbs etc. I absolutely believe this is linked to my symptoms returning. I did get covid for the very first time after my wedding in June but it didn’t make my side effects of the booster any worse that I noticed. Haven’t had covid since then again so it wouldn’t explain why I’ve relapsed.
I saw the dr yesterday and was sent for blood tests which also tested my antibodies. I should get the results this week so will let you know. Im still chasing my appointment with the neurologist to try and get further tests done/ investigation. My Dr wrote to them in March and still haven’t heard back with an appointment date so the waiting list in the UK to see a neurologist must be months long!
I’ve been doing a lot of research into oxalates, carnivore etc as I mentioned and I’ve only been doing a low oxalate high meat diet for 2 weeks but already seeing improvements in not just my nerve pain but also my gut health etc as it’s helping other inflammatory issues in my body.
How are your symptoms doing? Have they improved with time at all since they started?Hi. Thanks for your reply.
Congratulations on getting married!!
Yes i think diet does play a part for some people. When I laid off sugar and starch and got out running, my pins/needles improved a lot. Pre virus a lot my initial symptoms had stopped except for an occasional pain in my left hand and light pins/needles on hands and feet. This was livable.
2-3 weeks post virus my hands got really bad, along with aches and pains in my arms. My neuropathy in my feet, moved up to below my knees. I also developed a constant headache, over time brain fog (this has improved a lot), tingling, and anxiety (this improved with PEA). I think PEA helped with my pain as well. It took some time but i recovered a lot from the virus and felt okayish, a part from the additional symptom of a headache. I was later greeted by another symptom: insomnia. Honestly post virus the first month afterwards was hard but I improved. Of late I have slipped back (pain in arms) but I am unsure if I am legitimately getting worse and/or its caused by some additional stress in my life. I know the stress wont be helping but we cant live in a bubble. This is what prompted me to go to a neurologist. I also tried to see an immunologist but to no avail.
I haven't heard of a low oxalate diet. How did you hear about this?
Well that's great that Covid didn't flare up your symptoms. For some people it doesn't, or the flare is relatively short and people return to their pre virus baseline. Unfortunately for some, they start a new longhaul.
My suggestion would be to phone the neurologist you are wanting to see and ask when will your appointment be. Also ask to be added to the cancellation list. Neurologists are hard to get into, most were booked out til the new year, so I went to the best one I could find that was available. Thankfully there was a cancellation so I jumped the queue by 4 weeks.
Are you on reddit? There are some interesting points on this platform as well. Have you tried St John's Wort again?
Hi @buzzgirl,
I’ve had my blood test results and all they found was possible low iron! Now that I’ve started carnivore and eating more steaks I reckon if they test me again in 4 weeks my iron levels will be good! I have an appointment to discuss the results over the phone in 2 weeks so I will ask about my antibody results then too. I called the hospital to chase up my neurology appointment and they said the waiting list is 12 months long and there are thousands of patients in front of me!! I’m hoping that by the time I actually get an appointment I’ll be well into my new way of eating animal based, no carbs and no sugar and that my symptoms will be pretty much resolved. If you haven’t already then I advise you watch some YouTube videos by Dr. Ken D Berry - he talks about the carnivore diet and how it resolves inflammation. There’s also Paul Saladino MD, and and Sally k Norton who talks a lot about oxalates which are defense mechanisms in plants that make us sick. She and many others have cured a lot of their illnesses and inflammation from going low oxalate.
I’m starting back on the hypericum today and see how I get on. I ran out of magnesium glycinate supplements so I’m going to order some more of those. Thanks for introducing me to PEA. I’m going to see how I get on with this animal based diet first so that I can truly see if it’s working. If I take the PEA at the same time it will be hard to tell which one worked.
I’m just abit deflated that all my symptoms have returned months later, just when I thought it was finally going for good, it’s very disheartening when that happens isn’t it.
the fact that we’re all having tests and they can’t find any real issues and that we’ve had periods where we’ve felt better and it’s not been a day in and day out struggle or getting worse each day, this all gives me hope that what we are suffering with is temporary and it will go away.
when you saw the neurologist did they say they’ve had other patients come to see them with vaccine side effects and did they say they think it’s all temporary?
@heybro Hi Bro. Sorry, I can't reply to your pm because I don't have enough forum posts lol.
That's interesting about the B12. There could very well be a link. Oh and I'd suggest a B12 spray to up your levels. You squirt it on the inside of your cheek and it acts pretty quickly.
Oh and yeah, titanium is banned in the UK atm. But the UK is in disagreement with the EU about it being dangerous. Brexit=some confusion at times...
@squishle yes, there is a connection between low b12 and injury. low b12 matches long haul symptoms exactly.
I found this but i wonder if it also works for vax injury. Interesting 🤔
I did a hair test through the mail and found out I have zero cobalt which is basically b12. Funny enough B12 deficiency symptoms and long covid symptoms match exactly with each other.
I have always had normal red blood cell count tests and normal somewhat low (but not deficient) B12 tests. This zero cobalt came as a shock.
I am vegetarian and have started eating meat because of this. I've been eating tuna. I will try chicken soon.
To be clear, the titanium is likely in cookies that I eat (lots of candy type things have titanium dioxide added into them --- I think this is banned in the UK but not in the US). No, I do not have dental work or anything like that.
So does this mean it affects b12 specifically?
you know what now when I think about this this just occurred to me. So when my dad got his phizer
jab back in June 2021 he became severely anemic no blood loss anywhere nothjng in the stool nothing in the pee no nausea no vomiting the doctors found it strange where was he losing blood that’s when his hemoglobin dropped to 62 from 144….exactly two weeks after his jab he was so weak and pale he could’ve died. Also his b12 was severely low I remember this because I was giving him injections once daily for three days then weekly for a month then monthly for 4 months. He also got 2 units of blood transfused. He blamed the jab I blamed the jab. But of course the doctors never thought to blame the jab.
just thought I’d share that piece of information. It must does affect us all different individually at the time too he was having severe twitching in his body
could be from the low blood as well or combo. He was having restless legs and just didn’t feel well. Thanks god he’s much better doing well. I love my dad so much I wouldn’t know what I’d do without him right now. He’s been such a good support he’s retired now and he comes to help out around the house when I’m working. Does the dishes or laundry watches my daughter when we’re working. My husband too of course. I guess counting our blessings through the tough days can get us by. Night. I’ll update again if I remember something.
@margaret2022 Was your dad's B12 usually fine before the jab?
I know meat eaters who suddenly have no B12 after the jab as well.
B12 is required to make your DNA. Since this is mRNA technology, I am sure it requires a lot of B12 to make the spike. It seems logical.
@margaret2022 Was your dad's B12 usually fine before the jab?
I know meat eaters who suddenly have no B12 after the jab as well.
B12 is required to make your DNA. Since this is mRNA technology, I am sure it requires a lot of B12 to make the spike. It seems logical.
Yeah his b12 levels were good. It definitely did something to his b12 and hemoglobin.
@margaret2022 This is a pattern for sure.
I have found luck searching for B12 and Covid or B12 and Long Covid. The relationship between these is not censored like it is with the jab.
I would like to share a link:
The potential role of ischaemia-reperfusion injury in chronic, relapsing diseases such as rheumatoid arthritis, Long COVID, and ME/CFS: evidence, mechanisms, and therapeutic implications
Douglas B. Kell and Etheresia Pretorius
Hi all. I'm a newbie here. I've racked up 12 months of Long Vax Syndrome from the Pfizer Covid vax, with symptoms mirroring what many of you here are experiencing. I recently saw a vestibular physio who ran me through a whole bunch of tests and concluded that my vestibular system seems to be ok, but there's clearly a disconnect between my ocular and vestibular systems which could be the source of my dizziness. It might be neurological in nature, but I will need further testing with other specialists to find out.
For those of you in Australia, I want to introduce you to a new non-profit we've just launched for the Covid vax-injured in Australia. It's called COVERSE and the website is at coverse.org.au.
The website will grow, and provide more information along the way. We are also in the process of writing a submission to the Australian Parliament - they are holding a public inquiry into Long Covid and we will be writing about Long Vax Syndrome and the link between Long Covid and these vax injuries.
To support our submission, we need data - since the drug agencies are not very forthcoming with useful information. So we are asking all Covid vax-injured Australians to register with us and fill out the Vaccine Injury Profile. All data is completely confidential, and will only be used to gather statistical information to help us frame our submission.
Please share this with anyone else you know who is in Australia and is Covid vaccine-injured.
Hi all. I'm a newbie here. I've racked up 12 months of Long Vax Syndrome from the Pfizer Covid vax, with symptoms mirroring what many of you here are experiencing. I recently saw a vestibular physio who ran me through a whole bunch of tests and concluded that my vestibular system seems to be ok, but there's clearly a disconnect between my ocular and vestibular systems which could be the source of my dizziness. It might be neurological in nature, but I will need further testing with other specialists to find out.
For those of you in Australia, I want to introduce you to a new non-profit we've just launched for the Covid vax-injured in Australia. It's called COVERSE and the website is at coverse.org.au.
The website will grow, and provide more information along the way. We are also in the process of writing a submission to the Australian Parliament - they are holding a public inquiry into Long Covid and we will be writing about Long Vax Syndrome and the link between Long Covid and these vax injuries.
To support our submission, we need data - since the drug agencies are not very forthcoming with useful information. So we are asking all Covid vax-injured Australians to register with us and fill out the Vaccine Injury Profile. All data is completely confidential, and will only be used to gather statistical information to help us frame our submission.
Please share this with anyone else you know who is in Australia and is Covid vaccine-injured.
Wow lucky for Australia 🇦🇺 I don’t think there’s anything here in Canada I tried to report it to public health and I was told I don’t meet the criteria for adverse effects of the vaccine. I said what a waste of my time. Because I made an appointment which took a three week wait with the doctor. Filled out the paper. They emailed it or faxed it. Then I eagerly waited for a week and a half for them to call me. Once they called me that’s what I was told you don’t meet the criteria. I was like wtf what a waste of time. They said because it was 6 weeks after the vaccine. I told them it doesn’t matter if it was 6 months or 6 weeks or 6 days. I got so upset on the phone and I told that nurse I hope this is being recorded as well. Yeah but I hope you guys shine lots of light to the issue and the rest realize that it is real.
Hi everyone! Just wanted to post an update here. I posted about 2 weeks ago with numbness, tingling (mainly on right side of body where I got the shot) anxiety, and vertigo that started about 3 weeks after the first dose of Novavax. Weirdly, a a bad knee injury I got from CrossFit a year ago flared up and made my right knee stiff again. Also, when I was on steroids my right arm (where I got the shot) was tense as if I just worked out. I spoke with a neurologist and my GP. My GP said it’s likely the shot and he has seen many, many people with adverse side effects that range in everything. Had a brain MRI with and without contrast to rule out MS and (Praise God) everything came back clean. The MRI tech also told me they have done tons of MRIs purely from the COVID shot side effects. My GP said effects from the shot seem to go away within 6 months unless nerve damage occurred then one year. The neurologist said effects go away in weeks or month depending on the person and she has seen many people having shot side effects.
All that to say it is now day 22 and I feel like I’m back to normal again. I get lightheaded more easy than usual and a bit tired but overall feeling very normal. I do not plan on taking the second shot (I had Delta and it was horrible but not just plain freaky like this). Just know it will get better and end soon! It’s just a matter of time.
Hi All. I just got my 3rd COVID booster (4th shot in total), the Pfizer Bivalent, on October 4th. The first 3 shots I had barely any side effects. Felt slightly run down for 24 hours but nothing else. This last shot was more of the same, except a slight fever / chills the night after the shot. Then 3 days later, October 7th, I wake up with intense vertigo that won't go away. At first I did not want to think it was the shot that did it. Perhaps it was dislodged crystals or an infection. But at this point I am leaning back towards the shot as nothing the ENT or PT has done has helped. The ENT was not able to diagnose me with any kind of infection and gave me a steroid shot, which did nothing. The PT had a hard time pin pointing any specific affected canals, but we eventually came to the conclusion it was my right ear and lateral canal. But the bbq roll maneuver hasn't really helped, although I keep doing it every day just in case.
After doing lots of research and coming across this forum post, I am back to thinking it was probably the COVID shot. I'm on day 11 now of constant vertigo and I think it may be getting slightly better. Either that or my brain is just starting to adjust. I'm hoping it's starting to fade though. I have a follow up PT appointment tomorrow and I may run some of this past him, but at this point I'm guessing nothing is going to help but waiting it out.
I'm adding my experience here to this long thread in the hope that maybe at some point this will get officially recognized and taken seriously by doctors and drug companies. It clearly seems to be a reality for many of us. It's too big of a coincidence that this many of us have had vertigo appear out of thin air just days after being vaccinated.
Hi guys,
3 weeks into this nerve pain relapse of tingling and burning nerves and pins and needles and it’s a bad flare up. It’s so crazy that 8-10 weeks after initial onset of nerve pain symptoms from the booster that it suddenly went. From April to mid September I honestly had barely any nerve pain at all just the odd pins and needles in my right leg and foot and groin pain.
it’s so weird that it’s just returned with a vengeance! I’m only 1 week into my carnivore/ ketovore diet so can’t expect miracles yet I’m just trying to stay positive and hopeful as if I don’t then my nerve pain gets worse with the anxiety.
Anyone else keep thinking they wish they had a time machine to go back in time and not have had the vaccine haha it’s such an unhelpful thought but Im just so frustrated and full of regret. I just have to remind myself that I haven’t had this pain day in and day out for 9 months. I had it for about 3 months then a 5-6 month break and then weirdly it’s just returned out of nowhere. It’s winter here now in the Uk and getting cold and the cold weather Defo makes my nerve pain worse. Having hot baths takes the edge off.
Anyone had a relapse pattern similar to mine and found the relapse just as bad as initial symptoms?
Has anyone else developed bone pain/arthritis type pain after the vaccine?
As well as brainfog/affected vision, my old back pain has come back and I also have pain in my joints in my hands? Like an inflammatory reaction?
Yes. I have developed widespread bone pain/arthritis type pain all over but mainly in my legs and forearms and wrists. It's a strong dull gnawing ache that ebbs and flows but never goes away. It started to appear as my pins and needles started to slowly go away. I can't figure out if it's my bones/joints or muscles but sometimes it feels like the pain is coming from my bone marrow. I spoke with my GP about it as it was worrying me but his only response was that it sounded like a symptom of COVID. 🤔 How are you doing these days?
Hi KitKat - I just noticed your post where you speak of “gnawing ache” in your forearms/wrists. Just wanted to let you know that I also get that each time I have a flare up. The pins and needles go bananas, and then when my forearms start falling feel like a gnawing ache… I know I’m in for a big flare for a number of weeks. Once I get that feeling in my forearms (achy, deep strong, pain), I feel less or no tingling. When my flare up is ending, that gnawing slowly gets less