posted
Who's taking the COVID vaccine when it's available.
Would love to know if any long term lyme patients out there have reliable info from their LLMD's. What are they recommending?
I had debilitating Neuro lyme and am largely symptom free after treatment. Don't want to rock the boat but am thinking of taking it when it's available. Have never taken a Flu Vaccine.
Are we considered "at risk or vulnerable" part of the population? ie..would we get it earlier than others?
I've done lots of Vaccine research so please no conspiracy related replies here, thanks.
Posts: 770 | From USA | Registered: Jul 2006
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posted
I might have to bite the bullet and do it. Just heavily detox and pray ill be ok. I just started a new job that I absolutely love, it's in Healthcare ( business/ administration side) and worst case scenario I don't want to lose my job if I decline or wait. I gave them my medical exemption form for the flu shot and they were fine with it (thankgod)
A vaccine for Covid gives me so much relief and hope. However for someone with Lyme and Cos and who was injured by vaccines last year I am worried. If I become more sick and the vaccine triggers something ugly then what? Still lose my job? ☹
Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
Many Lyme patients have severe Immune disfunction. We simply don't make antibodies. Putting any vaccine in my body would be fruitless.
Did Lyme cause this Immune disorder or did this Immune disorder cause us to be unable to clear Lyme out of our bodies? Please get your IgG sub-classes tested.
A VACCINE MAY NOT BE THE ANSWER!
Dr H has conducted his own study on Lyme patients within his practice and to date, not one has ended up in the hospital. Hospital clinical trial is next.
posted
My Lyme doc is able to treat any patient who gets covid- says symptoms are down in 48 hours. Not true that people need a vaccine to treat covid.
I have taken lots of Vit C, Vit D, turmeric and a mushroom extract and I have had 3 negative tests. Pretty good for someone with an immune-compromised illness, yeah?
Posts: 13155 | From San Francisco | Registered: May 2006
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bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
C'mon team. Have you seen the symptoms of long haul COVID and how they are identical to long-haul (Chronic) Lyme?
Why would any of us what to risk getting that?
I know vaccines can and do cause issues, but for me I'd much rather roll the dice with the most heavily scrutinized vaccine in history rather than get COVID and face another decade of long haul symptoms. It just isn't worth it.
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3135 | From Massachusetts | Registered: May 2010
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posted
I already have the long-hauler symptoms. It's called MCAS.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96238 | From Texas | Registered: Feb 2001
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Hi Lymetoo! I have MCAS too but I am seriously considering the vaccine. Some think Covid-19 causes significant vascular damage and can affect any part of the body. Heart attacks, strokes, eye issues, permanent lung damage, permanent heart damage and the list goes on and on. When I read the facebook group posts of long haulers they sound very much like us and chronic fatigue syndrome patients. Lots is still unknown about post covid issues.
Posts: 6286 | From Oregon | Registered: Jan 2006
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Rivendell
Frequent Contributor (1K+ posts)
Member # 19922
posted
What is MCAS?
I was just going to post this same question about the vaccine. I really don't know what to do. It seems you could damned if you do, and possibly damned if you don't.
I never got totally well from lyme. Got reinfected too many times. Don't need Covid, and sure don't need to be a long hauler due to a reaction to the vaccine.
posted
As a RN who had a vaccine injury which was really the downward spiral of my health I would say wait. Not never, just but wait and see.
Personally, I won't ever get another vaccine; however, I don't think they are all bad. I would just wait and see how it goes with the general population before you jump in. Posts: 137 | From ATX | Registered: Nov 2011
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Rivendell
Frequent Contributor (1K+ posts)
Member # 19922
posted
MCAS Mast Cell Activation Syndrome. I believe I have that, as I am allergic to everything. I take a lot of quercetin and sometimes benedryl. I can no longer tolerate antibiotics because of it. Trying to build up the gut flora, but not having much success. So much inflammation.
I may just wear a mask the rest of my life.
Thanks Keiko for the good advice. I have not had a vaccine for decades. Your story concerns me, and I will definitely wait and see. Just wear a mask the rest of my life, maybe.
quote:Originally posted by bcb1200: C'mon team. Have you seen the symptoms of long haul COVID and how they are identical to long-haul (Chronic) Lyme?
Why would any of us what to risk getting that?
I know vaccines can and do cause issues, but for me I'd much rather roll the dice with the most heavily scrutinized vaccine in history rather than get COVID and face another decade of long haul symptoms. It just isn't worth it.
Agreed, thank you!
Posts: 770 | From USA | Registered: Jul 2006
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Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
You must educate yourself. Put in the time and work.
Major safety questions still remain. None of the trials included immunocompromised volunteers, so the effects of these vaccines on people with suppressed immune function is wholly unknown.
Data showed some patients developed HIV antibodies towards fragments of a HIV protein, which was used in the vaccine to stabilize the vaccine. What????????????
Posts: 3076 | From Florida | Registered: Nov 2016
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TX Lyme Mom
Frequent Contributor (1K+ posts)
Member # 3162
posted
I've already lost the link, but I read a warning somewhere which warned that persons with bad allergies might have trouble with the COVID vaccine, which made me think immediately of MCAS patients.
I had intended to post that article immediately, for fear of losing track of it, which is exactly what has happened. I promise to come back and post it here, if/when I'm lucky enough to find the link again.
Until then, here's what our daughter's old allergist from any years ago used to do to protect her whenever she needed any kind of flu vaccine or other immunization. He broke the dosage down into two (or more) smaller dosages and gave them a couple of weeks apart.
It's been too long ago for me to remember any of the specific details, especially about the timing of subsequent dosages.
What I do recall is that this method was very effective for her. She did not suffer any major setbacks this way.
I suspect that many allergists would be open to this idea because they are already familiar with super-sensitive patients -- in case you need to go doctor shopping in order to find someone open to this idea.
Obviously, this method would not be feasible for the vaccine (from Pfizer?) which requires super-cold storage because it decays very rapidly at room temperature, but most of the other COVID vaccines from other manufacturers do not require extremely cold storage conditions.
Posts: 4563 | From TX | Registered: Sep 2002
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posted
I tried to post a video from a LLMD about this subject, but the link doesn't activate.
This doctor feels positive about this vaccine because it doesn't introduce any virus into a person's system, but instructions for the immune system. When he says to weigh the risks, he's saying it's life threatening for people with LD to get covid-19.
Basic summary:
3 reasons for thinking twice about this type of vaccine:
1. If you have ever had a severe reaction to anything. Severe doesn't mean a few days of headache, or plugged up sinuses, etc. This means those who carry an epi pen with them all the time. This applies to all vaccines, not just the covid vaccine.
2. Some people have an autoimmune illness that can be proved with blood tests. Not all people with LD have autoimmune blood markers. If they do, there is a 1% chance they will have problems with a vaccine of any kind. So, they have to weigh their risks, the vaccine's possible negative outcome against risk of dying with covid-19.
3. If a person had a vaccine of any kind in the past, and it caused a serious relapse of lyme disease (not just a month or two of feeling worse).
This vaccine is so different from any before it, there is no information about people with LD taking it. There's no information about long term effects.
end of summary
My friend who works in the ER of a local hospital is going to hold off and see how it goes, but she is very healthy and protects herself well.
I'm inclined to wait and see. That is risky for a person who catches every little thing that comes along
[ 12-31-2020, 11:08 PM: Message edited by: daisys ]
Posts: 559 | From New Mexico, USA | Registered: May 2007
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quote:Originally posted by Robin123: My Lyme doc is able to treat any patient who gets covid- says symptoms are down in 48 hours. Not true that people need a vaccine to treat covid.
I have taken lots of Vit C, Vit D, turmeric and a mushroom extract and I have had 3 negative tests. Pretty good for someone with an immune-compromised illness, yeah?
What does your doctor do to beat Covid-19 in 2 days? What you just listed?
Posts: 559 | From New Mexico, USA | Registered: May 2007
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TX Lyme Mom
Frequent Contributor (1K+ posts)
Member # 3162
posted
quote:Originally posted by TX Lyme Mom: I've already lost the link, but I read a warning somewhere which warned that persons with bad allergies might have trouble with the COVID vaccine, which made me think immediately of MCAS patients.
I had intended to post that article immediately, for fear of losing track of it, which is exactly what has happened. I promise to come back and post it here, if/when I'm lucky enough to find it again.
OK, here's the link to the article which I thought I'd lost. It was still open on my computer.
Funny thing though: I had first seen the link to that article posted right here at LymeNet, by Bonnie, in her message immediately above my previous message! Thanks, Bonnie!
posted
I'm not going to get the vaccine. Too many allergies and history anaphylaxis reactions. However, I am now taking Vitamin D3 and zinc for protection. There have been small studies on Vit D3 with covid 19. Also, smart doctors are well aware the benefits of Vit D3 and respiratory illnesses because it was already in studies long ago.
quote:Originally posted by TX Lyme Mom: I've already lost the link, but I read a warning somewhere which warned that persons with bad allergies might have trouble with the COVID vaccine, which made me think immediately of MCAS patients.
Exactly. It's recommended in the UK that anyone who has to carry an epi pen should not get the vaccine.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96238 | From Texas | Registered: Feb 2001
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"Data related to risk in individuals with a history of allergic reactions to previous vaccinations and/or mast cell activation syndrome/idiopathic anaphylaxis is very limited and evolving."
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96238 | From Texas | Registered: Feb 2001
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quote:Originally posted by Robin123: My Lyme doc is able to treat any patient who gets covid- says symptoms are down in 48 hours. Not true that people need a vaccine to treat covid.
I have taken lots of Vit C, Vit D, turmeric and a mushroom extract and I have had 3 negative tests. Pretty good for someone with an immune-compromised illness, yeah?
What does your doctor do to beat Covid-19 in 2 days? What you just listed?
Ok, here's his list:
1) ViraClear - a homeopathic remedy that helps to clear respiratory illness. Available on Amazon as a cherry-flavored syrup and tincture. Said if ill, to take 4x the normal dose 4x/day, and have at least 2 bottles on hand. Made a pretty strong statement that taking ViraClear early on has a good healing impact.
2) Safecell glutathione - said if already taking it, double it - ie if taking 2 pills in the am, add 2 at noon. Watch for sped-up feeling, insomnia. 60 capsules in a bottle, 300mg each.
3) upped Vitamin C - said to take 3x more than what normally taking (me - I really up it)
4) Noxylane - it's a shiitake mushroom enzyme extract. Said if on it, up it to 3 pills 2x/day.
Just giving instructions verbatim. Obviously for first-time users, see how any of it goes.
Most recently, he said 48-72 hours for clearance of COVID sx in his Lyme patients!
[ 01-13-2021, 04:32 AM: Message edited by: Robin123 ]
Posts: 13155 | From San Francisco | Registered: May 2006
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posted
Thank you! Might be good to have this stuff on hand...of course, I have the Vit. C.
Posts: 559 | From New Mexico, USA | Registered: May 2007
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Phoiph
Frequent Contributor (1K+ posts)
Member # 41238
posted
Risks of Covid-19 mRNA vaccine to those with chronic Lyme Disease and other neuro-inflammatory conditions, plus preventative and alternative treatment options:
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96238 | From Texas | Registered: Feb 2001
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Rivendell
Frequent Contributor (1K+ posts)
Member # 19922
posted
Well, I got the first part of the Moderna Vaccine yesterday. I was really afraid. I believe I have MCAS, as I am allergic to everything, always fighting inflammation. Never got totally well from Lyme.
But, the new variants are scaring me. And all the people that are dying from this.
So, I just went for it. Had to wait 15 minutes after the injection. Felt anxious after shot. And I think my imagination took over. I have been dealing with panic issues the last couple of years, so most likely was just that. The only true symptom that I know for sure was real, was a sore arm.
Today, I don't feel any different that usual.
I go back in a few weeks for second shot/booster, which can sometimes cause more symptoms.
Will let all you know more about how I do with that.
But this was done while in my car. Then we parked and waited for any serious reactions. They had an ambulance and medical team present for such things. And the hospital was fairly close.
Thought I would share.
P.S. I am scared of vaccines, and usually don't get them.
posted
I would eventually like to get the vaccine. Not anytime soon though. The *earliest* maybe this summer. Esp not when I am in the brunt of treatment.
That new variant frightens me too. Vaccines scare me for sure more than Covid. Its a tough decision . I was personally injured by one almost 18 months ago. Its a gamble, for sure but a very important personal decision. Nobody should be bullied or negatively swayed to take/not take it.
My work knows I am waiting and they have been great and accepted my flu vaccine exemption. I was rest assured it wasn't mandatory, for anyone. Mind you I work in healthcare ( they don't know I'm sick).
Good luck Rivendell I'll pray you'll do well 🙏 positive vibes sent your way! 🙂
Quite a few of my coworkers got sick after their 2nd shot but within 48 hours they were fine. Not sure why the 2nd does that.
Posts: 597 | From Massachusetts | Registered: Mar 2019
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posted
it's a no for me. My Lyme became symptomatic after a flu vaccine. Can't imagine what would happen with this where people get really sick after the 2nd vaccination.
Plus with the new strains the effectiveness is too low to consider. my doctors say don't get.
-------------------- Lisa T Posts: 42 | From madison wi | Registered: Aug 2007
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Rivendell
Frequent Contributor (1K+ posts)
Member # 19922
posted
My Lyme symptoms have never gone away. And I know this stuff is still in my body. I think it hangs out in my skin, joints, and brain. Zithromax helps me the most, but had to stop because my poor gut couldn't take any more, plus ringing in my ears
I take a few Buehner herbs and rub essential oils on my skin. That stuff (essential oils) is potent and knocks me on my butt.
I'm 67, have asthma, and just dealt with breast cancer. I feel so vulnerable. So I went for it.
Haven't had vaccines in decades, and never had a flu vaccine. But, I always thought feeling sick after some vaccines was normal.
And I get the flu, or something bad, every two or three years, but since Lyme never completely left, wouldn't know if the flu brought it back or not.
So it is a gamble, and no one should be bullied either way. And if you have suffered an injury from a vaccine, it is good to think this through very carefully.
Just sharing my experiences to help the rest of you to decide one way or the other.
And I can always change my mind about the second shot, although I am preparing myself to go through with it.
I have such a fear of an allergic reaction. Don't know if taking Benadryl before this next shot would help. I have taken Benadryl before getting Kat Scans.
I am not in Lyme treatment now. Don't know what my doctor would have said.
I used to get Bee shots for allergies. Got those weekly and did okay, but boy my arm would get so red.
Thanks for your good vibrations and prayers. Best Wishes in your decisions.
posted
I have been refusing vaccines for many years, but have decided to get the Covid-19 vaccine.
It's a choice between 2 risky decisions. I believe covid-19 is far worse than the vaccine. With my health, I know I should never catch this virus.
I stay at home, and my husband is very careful when running errands for us. I went to one appointment where everyone was very careful. Yet, somehow I caught the seasonal flu. I'm fine now, but see how easy it would be to catch Covid-19.
This is a hard issue to decide on without all the facts we need to make an informed decision. I respect whatever others do. Those who have to live with their decision should make their own choice.
Posts: 559 | From New Mexico, USA | Registered: May 2007
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Phoiph
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posted
FYI, the quotes in that tweet came from Mercola's article found in my previous post above.
Posts: 1978 | From Earth | Registered: Jul 2013
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Beverly
Frequent Contributor (5K+ posts)
Member # 1271
posted
No, it’s not safe, it’s not like any other vaccine. Thankfully Covid is very treatable.
-------------------- God Bless You! Everything..is just my opinion. Posts: 6639 | From Michigan | Registered: Jun 2001
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posted
Don’t believe e a tweet. And the md in Mercola’s interview has been discredited. She doesn’t even believe in wearing masks. Bet she wouldn’t let a surgeon operate on her if he or she didn’t wear a mask.
But if you are concerned about mRNA vaccine wait for the Johnson and Johnson.
I know 3 people who have died from covid. And two who are long haulers, so I don’t agree that covid is very treatable.
Just my opinion.
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 9450 | From Illinois | Registered: Aug 2004
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Phoiph
Frequent Contributor (1K+ posts)
Member # 41238
posted
Since we still know very little about Covid-19, including its origins and the circumstances surrounding it, I feel it is important to keep an open mind and consider all sides, even (especially) those that have been censored. The information in the article is definately worth consideration, IMO.
After all, has the public ever been fed the truth about Lyme Disease?
Posts: 1978 | From Earth | Registered: Jul 2013
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posted
I personally think it's safer to strengthen our immune system naturally. That way, we can fight off anything.
I usually get a lot of flus. This year, because I was scared of the covid virus, I upped my immune boosting 2-5x, and as a result, only got a couple flus, maybe like 3 in the whole year.
I went for virus testing during my first one, wondering. Got a negative test. I asked them how would we know if we had the flu or the covid virus. Answer - we don't know!
So, as a result of really good daily immune boosting, I've been the healthiest I've ever been, and I'm now 15-20 pounds heavier, because I normally lose weight during the flus, and I haven't had that chance this year!
So, here to report immune boosting is working out great, but I've got weight gain to show for my success - lol.
Posts: 13155 | From San Francisco | Registered: May 2006
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posted
I am planning to get the covid vaccine, when it is available to me.
My Lyme treatment was years of abx, then LDI which got me pretty well. Then I got hit with mold, worked on that and got better. I was doing great, then last April hubby and I both got covid.
The symptoms were bad but our O2 sats were okay and we didn't need hospitalization. Since then we have struggled with post-covid symptoms: chronic fatigue, muscle and joint pain, some neurological symptoms, etc. My doctor found my IgG for EBV quite high, activated by covid?? Now treating with herbal tinctures and feel like cr*p.
We know of people who died. Both my elderly parents got it and survived, but Dad now has some new heart issue. I read one of the Lyme docs online said he thinks that Covid is dangerous enough for his patients that he does recommend the vaccine.
In my case, I don't know if my system will make antibodies? Who knows. But I think it will be at least worth a try. The new variants are so contagious, I don't know how people will be able to avoid them. I sure don't want to get this again. I'm 67 now. Just my two cents.
Posts: 261 | From Nebraska | Registered: Jan 2010
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posted
My current LLMD says if I get the vaccine, be sure it's J & J. I don't know how that one is different.
My previous LLMD gave me the impression that yes, getting the vaccine is risky, but getting Covid-19 has a much higher risk of death.
Sillia, what is LDI?
Posts: 559 | From New Mexico, USA | Registered: May 2007
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Rivendell
Frequent Contributor (1K+ posts)
Member # 19922
posted
I got my second Moderna shot this past Monday. I was feeling great that day, and had no allergic reactions. But I have started taking Zytec 10 mg. twice per day because I am allergic to everything, so maybe that helped.
Yesterday, the day after the vaccine, I felt very tired with brain fog. Would have thought it was lyme stuff, but realized it was most likely the vaccine.
Today, I feel a little better, but still sluggish.
I am glad I did it, because of the awful things this virus has done to people. One of our local meterologists anchors a morning show. She is young, lots of charisma and energy.
She got covid last November, and has not recovered. The station would not renew her contract. Very sad.
And we all know what it is like to lose so much of your life to an infecion.
But, each person needs to decide what is safe for them. We are all different.
Good luck to all of you in whatever you decide.
And, if I go down hill later, and I think it is due to vaccine, I will let you know.
posted
BartenderBonnie, thanks for the Dr H. link mention. The video was very informative. Haven't gotten to the other shared links yet.
Posts: 194 | From Pa | Registered: Mar 2004
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Rivendell
Frequent Contributor (1K+ posts)
Member # 19922
posted
I have always stayed away from vaccines, but this is a crazy time.
I have tinctured herbs that might help with the covid, in case I or my husband got sick with it.
Normally, I would try to treat viruses naturally, but with this, no one knows what will happen.
Sometimes its mild. Sometimes people slowly get sick.
But some people start off feeling under the weather, and within a few hours, they can't breathe, and are heading to the hospital for oxygen.
In that scenario, there wouldn't be time for herbs, or making an appointment for an ozone treatment or other types of healing that might otherwise work.
So, that was the main deciding factor for me.
Once you are in the hospital to breathe, you have to take their treatments, so..
Good luck to all of you.
Hopefully herd immunity will come soon, and those who are afraid will be okay.
aklnwlf
Frequent Contributor (5K+ posts)
Member # 5960
posted
I wanted to jump in here and let you all know that as someone who has mast cell issues I had an incremental Moderna vaccine for Covid at my allergist's office yesterday. It was give in 3 separate shots of 10%, 30% and 60%. I was monitored with an Oximeter off and on and checked regularly. Outside of a very sore arm I had no reaction to the vaccine.
I've never had a vaccine outside of childhood vaccines so this was my first and I was super nervous since I have bouts of anaphylaxis.
I'm totally fine today and worked outside in the yard.
I'm scheduled for my second full vaccine on April 19th and will report back.
-------------------- Do not take this as medical advice. This comment is based on opinion and personal experience only.
Alaska Lone Wolf Posts: 6532 | From Columbus, GA | Registered: Jul 2004
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aklnwlf
Frequent Contributor (5K+ posts)
Member # 5960
posted
Oh also wanted to let everyone know that I did fast 9-10 days, more on than off, with liquids such as coffee, broth, protein drinks, etc. to get my histamine down.
I think that helped me not to have a reaction. My histamine level when tested was over 1300. Normal is like 200-300, hence the fasting.
-------------------- Do not take this as medical advice. This comment is based on opinion and personal experience only.
Alaska Lone Wolf Posts: 6532 | From Columbus, GA | Registered: Jul 2004
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posted
I received the two dose Pfizer vaccine. No reaction from first dose. Itchy for two hours at the second injection site.
Posts: 20 | From New Jersey | Registered: Aug 2016
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