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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Poll: Are you going ahead with a Booster vaccination?

Are you going ahead with a Booster vaccination?

  • As soon as possible because I feel I am at risk

    Votes: 58 47.2%
  • I am still thinking about this

    Votes: 9 7.3%
  • I might well have the booster but at a later date

    Votes: 11 8.9%
  • I am very concerned about having the booster as my condition seems to have worsen since vaccination

    Votes: 12 9.8%
  • I am definitely not going to have the vaccine as I don't feel it's right for me

    Votes: 31 25.2%
  • Other (please explain)

    Votes: 7 5.7%

  • Total voters
    123

bertiedog

Senior Member
Messages
1,736
Location
South East England, UK
Have you taken any extra steroid as a stress dose while you are sick (or do you feel that this would not help)? Sorry if you already said this and I missed it and I hope that you feel better soon :hug:
Hello Ginger

Thanks for asking. I had upped my steroid to 7 mg since the Spring because of my apparent reactions to the vaccine and haven't been able to bring the dose down. On some days earlier in the summer I would get back to 6 3/4 mg Pred but I would feel the difference in a negative way of that tiny reduction so invariably would have to go back to 7 mg. I also found the lower dose meant I slept a lot worse and would sometimes get anxiety at night.

As I have been resting more this week I have been feeling better. This involves not taking Snoopy to the park in the afternoons which regularly seemed to bring on all symptoms of PEM which I think then built up. I have been able to have very short walks though and now able to do various jobs in the home. Also I feel a lot better in myself so I guess its up to me now to keep restricting what I do but I find this extremely difficult to do.

Yesterday I had physio on my legs, the muscles were so painful with many hard lumps but I think she has helped the blood flow with the treatment. I have also had to wear supports on both knees/calves to support the muscles in the hope that in a few days I will be able to leave them off as the muscles recover. She also gave me a gentle stretch exercise for the hamstrings which I can do sitting so I will definitely do that daily.

I did the test for my antibodies 2 days ago so hopefully won't be long before I know the full picture regarding my protection against Covid but still feel having the booster is the last thing I want to do at the moment.

Hope you are doing well.

Pam
 
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keenly

Senior Member
Messages
814
Location
UK
We now have evidence of a plausible biological mechanism of how mRNA vaccine may be contributing to increased cardiac events. The abstract is published in the highest impact cardiology journal so we must take these findings very seriously
‘’We conclude that the mRNA vacs dramatically increase inflammation on the endothelium and T cell infiltration of cardiac muscle and may account for the observations of increased thrombosis, cardiomyopathy, and other vascular events following vaccination."


https://www.ahajournals.org/doi/10....P2LgLfbl5sBFzLch9-Vpdeh3kBYeGlt9WhsiMXS4saQs&
 

Gingergrrl

Senior Member
Messages
16,171
Hello Ginger Thanks for asking.

:hug:

I had upped my steroid to 7 mg since the Spring because of my apparent reactions to the vaccine and haven't been able to bring the dose down.

That makes sense and it sounds like you really need the higher dose after your reaction to the vaccine.

As I have been resting more this week I have been feeling better.

That is great news!

Yesterday I had physio on my legs, the muscles were so painful with many hard lumps but I think she has helped the blood flow with the treatment.

I am glad to hear this and I am starting PT (Physio) next week for worsening pain in my hip and hoping it will help me.

I did the test for my antibodies 2 days ago so hopefully won't be long before I know the full picture regarding my protection against Covid but still feel having the booster is the last thing I want to do at the moment.

Let me know what happens w/the antibody test. I did a blood test for COVID antibodies in Aug/Sept (just out of sheer curiosity if I'd ever had COVID at any point without knowing it) but did not have any antibodies.
 

bertiedog

Senior Member
Messages
1,736
Location
South East England, UK
I did the test for my antibodies 2 days ago so hopefully won't be long before I know the full picture regarding my protection against Covid but still feel having the booster is the last thing I want to do at the moment.

So I have got my antibody result, its 201.000 U/ml which means I will still have some protection which is good to know. The NHS consider anything over 250,000 as a high level. I think I can still hold off the booster for longer as long as I go on being extremely careful when in busy places which isn't very often.

Pam
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
Not had any of the vaccines and not intend to get vaccinated as long as I am allowed. I traveled to a very high covid city and back few weeks ago. I go out regularly, shopping, eating out etc. and mix with crowds. Try to wear masks as little as possible. I mean only when I have to. Not caught covid as yet.
Myself and my husband, my brother and his family and one sister in law are the the only unvaccinated human beings that I know so far. All the neighbours and friends and rest of the family had all the vaccines and the boosters. Most had terrible reactions and few are seriously unwell.
COVID is not likely to go away anytime soon, and it has been known to kill people and produce long term damage. Cavalier behavior like traveling to high risk areas and not wearing masks raises ones risk, as well as being unvaccinated and one's immediate family members not having been vaccinated. There is no guarantee anyone will have a mild case, and what you are describing sounds very risky.
I would gladly take that risk in order to prevent the spread of covid, and to protect myself and my loved ones.
That's really great! I wish more people felt this way. COVID continues to spread because people are not wearing masks, social distancing and getting vaccinated. Also, some people are immunocompromised, and even having been vaccinated, they are at risk and at the mercy of others' behaviors of getting vaccinated and wearing masks.
Vaccines (and infections) use up our vitamins/minerals so if you are depleted then having a booster will just make you feel worse, I'd imagine. Better to give yourself time to recover, that's what I'd do.
Or, you can supplement B vitamins, vitamins C and D, zinc, and other nutrients to support our immune systems. Taking antihistamines and curcumin will help with side effects.
We now have evidence of a plausible biological mechanism of how mRNA vaccine may be contributing to increased cardiac events. The abstract is published in the highest impact cardiology journal so we must take these findings very seriously
‘’We conclude that the mRNA vacs dramatically increase inflammation on the endothelium and T cell infiltration of cardiac muscle and may account for the observations of increased thrombosis, cardiomyopathy, and other vascular events following vaccination."

https://www.ahajournals.org/doi/10....P2LgLfbl5sBFzLch9-Vpdeh3kBYeGlt9WhsiMXS4saQs&
The people in the study were already cardiac patients and so were at higher risk. These risks should be considered and precautions should be taken to help these patients tolerate the vaccine.

For the rest of us, it is good to be educated about risks and potential side effects and work with our doctors to mitigate them.


I have Factor 2, a genetic clothing disorder, MCAS and immunodeficiency. I had 3 Moderna doses, on the advice of my ME/CFS specialist, who thought I would be at high risk for complications, hospitalization and death from COVID and thought that any impact of the vaccine would be far preferable to getting COVID. He suggested taking mast cell stabilizers and antihistamines and I have access to heparin if needed. I learned that taking NAC and bicarbonate can successfully reverse the clotty blood from the vaccines.

I did have fever, pain at injection site, body aches, and fatigue lasting a week with the first 2 doses, and more intense symptoms with intestinal pain for only 3 days after the third full dose. My immediate family members and friends gave all gotten fully vaccinated and about half have had boosters so far, and aside from the usual side effects, no one has had any bad effects. I also know of 4 people under the age of 50 who died unexpectedly from COVID, two of whom had autoimmunity, and 2 were normal "healthy" people.
 
Messages
20
lv had covid, on Sept 15th im severe M.E and housebound, l caught it off my husband (who caught it on the 13th ) who does all our shopping., He had already had his 2 vaccines and l had had just one at at the time. he covered after 9 days , l didnt recover for over a month and was very ill and lost l. and 1/2 stone. l never ,, ever want to feel that ill from covid ever again. So as soon as l was well enough l went and got my 2nd vaccine and im waiting for my booster. l was very against having the vaccine to begin with, even though my children and husband had gone ahead and had theirs when offered..My husband, all my neighbours and all my siblings and husband siblings ,have had the vaccines when the first came out. 3 have cancer, 2 have diabeties, and 2 have serious heart problems , all years before their vaccines. age range from 40 to 80 and no one has yet had any deaths or illness from the vaccines. My husband asked me my why l didnt want the vaccine and l told him l was reading about all the side effects that were being reported. lHe asked me that he didnt understand why l was basing my decision on what l had read from social media, news etc and not done my own research about what the vaccines really are. l agreed with him that l'm a very rational person and that l was being influenced by uniformed people and not science. So l studied it all up and decided the vaccine was my best option. Im so sad to have heard from my friend who is elderly that is refusing the vaccinces, that she wont have it because she doesnt trust the goverments, she thinks the vaccines are poison, and believes it 's the work of the devil forcing it on to everyone, And her children and grandchildren are listening to her and are also refusing the vaccines. Is she informed ? she says she is. and l fear that its a matter of time before she catches it , as it mutates to stronger virus, from someone who comes into her home.. My husbands 2 doses of the vaccine & my l dose of the vaccine l truly believe stopped us being hospitalised. Like all viruses ie Cancer ,Polio etc etc l dont think there will ever be a cure for Covid, just vaccines to help our bodies, and time will tell if its possible to have stronger vaccines to help us keep us alive from mutations of it. It looks as if now Covid is Endemic, so l made my own decision from on my own research based on the science on how Covid Viruses works . l owed it to myself to do my own research and not on fear coming from a few uniformed people. Everyone must make their own decision and l believe l made the right one for me. Im fed up reading and hearing and implying lv taken poison ! ! l will not accept others fear. l will not accept the fear from my elder friend to base any of my decisions. Am l wrong, ? l could be wrong, time will tell, , no one knows, but this is a emergency situation we find we are living in whether you believe that or not.
 
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hapl808

Senior Member
Messages
2,010
Am l wrong, ? l could be wrong, time will tell, , no one knows, but this is a emergency situation we find we are living in whether you believe that or not.

I think our messaging would've beeen better if health authorities said a version of that. "There could be unintended side effects when dealing with billions of people, but the side effects of COVID are much greater, so it's the best choice in our situation."

But I think the worry for many of us in the chronic illness community is not only that we could crash or get bad side effects, but that the medical establishment will then laugh at us and gaslight us about our situation and deny us treatment.

They have been gaslighting and marginalizing us for years. This breeds distrust and suspicion (even when unwarranted), but they can't really be shocked that they reap what they sow.
 

bertiedog

Senior Member
Messages
1,736
Location
South East England, UK
I think our messaging would've beeen better if health authorities said a version of that. "There could be unintended side effects when dealing with billions of people, but the side effects of COVID are much greater, so it's the best choice in our situation."

But I think the worry for many of us in the chronic illness community is not only that we could crash or get bad side effects, but that the medical establishment will then laugh at us and gaslight us about our situation and deny us treatment.

They have been gaslighting and marginalizing us for years. This breeds distrust and suspicion (even when unwarranted), but they can't really be shocked that they reap what they sow.

I feel exactly like you do, here in the UK you just don't ever hear the experts discussing possible side effects for people with long term conditions. When I looked on the ME Association's website regarding Covid and any possible vaccination risk for people with ME they did say that on balance they recommended it but they also pointed out that in a very small minority of people their ME was actually triggered by vaccination but not of course by the current vaccines.

If there was a little more discussion from experts about possible longer term side effects for some people but these are outweighed by being vaccinated because Covid is a killer, I think many of us might be more confident about having the vaccine plus boosters rather than zero discussion as if this possibility doesn't exist.

Pam
 
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erin

Senior Member
Messages
885
COVID is not likely to go away anytime soon, and it has been known to kill people and produce long term damage. Cavalier behavior like traveling to high risk areas and not wearing masks raises ones risk, as well as being unvaccinated and one's immediate family members not having been vaccinated. There is no guarantee anyone will have a mild case, and what you are describing sounds very risky.

I know it's announced to stay here many years, -by many organizations. Long term damage is worrying, as worrying as vaccine damage. I feel vaccine damage is going to increase as people are getting vaccinated and this is a burden for immune system, a huge burden for a person with ME.

My behavior is not cavalier, I need to live my life. I had to go to the place where had high rates. I feel masks are not protecting and huge down sides wearing them. People have to have a choice what to do with their lives, I respect everyones decision, though gutted to see some family members having a serious disease after vaccinations and few friends had terrible reactions. I don't want to write about it not to scare people here, who already very scared and decided to take the vaccine.

Regarding the mild case, I don't ever believe there's any guarantees, I don't believe vaccine guarantees anything as yet either. It is still very earl days. All the information given us is based on studies not on real stats on population. I see no real scientific investigation to vaccine side effects at all. Not even minutely mentioned in any press or media.

I see and heard of people I know who had covid since the beginning of the pandemic. I also see and heard the ones vaccinated and got sick and died. I've based my decision on this so far.

edit: I was asked to add a citation for the statistics of the death rate, (erased by the moderation). This is my source https://swprs.org/studies-on-covid-19-lethality/#age
 
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andyguitar

Moderator
Messages
6,581
Location
South east England
Andy do you think then that the need for the Booster is being exaggerated if you don't mind saying?
The situation might have changed a bit now that the new variant has turned up in England, so I'm considering a booster shot but...... it might not be that effective against the new variant. Nobody knows yet. The alternative is to wait for a new vaccine that is specific for it. Looks like one will be available in 3-4 months ish.(Maybe) I might well wait for that.
 

bertiedog

Senior Member
Messages
1,736
Location
South East England, UK
The situation might have changed a bit now that the new variant has turned up in England, so I'm considering a booster shot but...... it might not be that effective against the new variant. Nobody knows yet. The alternative is to wait for a new vaccine that is specific for it. Looks like one will be available in 3-4 months ish.(Maybe) I might well wait for that.

Funny you should say that Andy I have just booked my booster for Thursday for the same reason you have said!!
Now I know my antibodies are no longer high and with the arrival of Omicron I feel it is the sensible thing to do.

Pam
 
Messages
20
What was really surprising to me when l spoke to my elderly friend who believes the Covid Vaccine is poison is that she had Radiation Therapy for her breast cancer and did not hesitate to receive it even though reports says radiation damages healthly cells as well as cancer cells. She never talked about if she did any research that says as with all treatments of viruses, there will always be risks. My research found that indeed some people died from Radiation Treatment and not the cancer.
. She hasnt mentioned to anyone that she would refuse her Radiation based on that information. The only reports iv read so far about deaths and illness from Covid vaccines has been a very small percentage of people, which as with all treatments of viruses is to be expected. But l have read 2 conspiracy websites who say they are 'just hard working people' who believe 'the vaccines 'murders' and quotes we are being mislead with fear and lies. When l researched to see who runs the website they will not disclose who they are !!! So who are spreading fear and lies if they make claims the vaccines ' murders'
As l said l will not be influenced by one or two emotional rhetoric from unreliable website sources, who wont even disclose who they are but who falsely claim they are transparent, l will base my own health decisions to the best of my ability to rational scientific information from my own research on how the Covid Viruses work.