Well, I've scoured the internet and read nothing but conflicting info.
I've had Lyme for years, was diagnosed with MCAS in the fall.
I am curious if there are others out there like myself that have gotten the vaccine or were advised against it.
My LLMD has advised me to NOT get the vaccine.
Not looking for a debate, just an honest conversation or story of experience.
All answers and opinions are welcome!
Cheers to good health for all.
Posted by Mountainsky (Member # 51857) on :
Hi Jess,
I have a quick question, alittle off the vaccine topic lol but what tests ( names) are involved to detect MCAS?
Thanks đź’š
Posted by Energy2Heal (Member # 2010) on :
Thank you for raising this question. I’m in the same boat. Long-term Lyme, MCAS, in the last year I’ve been extremely ill and in spring 2020 I started having severe reactions (many of them neurological) to tiny doses of nearly all medications and many supplements.
Earlier this year, my LLMD said “if anyone is going to have a bad reaction to the vaccine, it’s you.” I’m extremely hesitant.
Debate and discussion by people in our position is not allowed on any of the large media sites. I’m in a mast cell group with 18,000 people and we’re not allowed to discuss it.
Posted by Lymetoo (Member # 743) on :
I also have MCAS, but that is not my only reason for saying NO.
I have done my research. You may want to look into the work of Dr Jane Ruby or Karen Kingston, former scientist for Pfizer.
Posted by swimmeredurp (Member # 34305) on :
My LLND recommended that I DO GET the vaccine. I got Pfizer back
in March.
Posted by hiker53 (Member # 6046) on :
AlaskanLoneWolf (AK) has MCAS and got the vaccine at her allergist.
I talked to her last week on the phone and she is alive and well!
Posted by hiker53 (Member # 6046) on :
Both Dr Ruby( not a medical doctor) and Karen Kingston falsely say that the mRNA vaccines have graphene oxide in them. This is not true.
And Kingston did not work on the Pfizer vaccine. She believes the vaccine is planned genocide.
Also Dr. Ruby subscribes to the idea that the vaccines make you magnetic. What a joke.
How many people have you seen suddenly getting stuck to something magnetic?
Consult your GP/allergist or LLMD before getting a vaccine but make sure you double check the facts because there are so many conspiracy theories out there.
I certainly did my research before getting the Pfizer vaccine. No side effects except a 12 hour headache. But, I do not have MCAS.
[ 01-24-2023, 05:01 PM: Message edited by: hiker53 ]
Posted by LisaK (Member # 41384) on :
I will not get vaccine becasue my genetic person and my LLMD both said NO WAY.
if I mention mast cell as a reason to any other dr. they just nod in agreement. to what they are agreeing to I don't know because I don't ask.
I do know however, a person that almost died from the vaccine. she is a main stream poster child for tick disease and everything that comes with it so she listens to all the "regular" drs and does exactly what they say. she was sick for months!! and like I said, almost died. in hospital for a month, NO THANKS
I dno't even want to take that chance.
BUT the more it is becoming a forced vaccination the more I wonder how me and others will get away without????
besides fake cards, anyone have a note or something from dr??
Posted by hiker53 (Member # 6046) on :
LisaK.—it is definitely your choice whether to get vaccinated or not.
I am just sick of the conspiracy theories going around. The covid vaccines are safe for most people.
I do have a friend who has to get a medical exemption as her employer requires it but the vaccine could kill her like the flu vaccine almost did.
There are always going to be those who cannot get vaccinated and should not get vaccinated. That is why those of us who can get vaccinated should. It will protect you and others and slow the variants.
I certainly hope no one here gets a fake vaccine card. Against the law and morally unethical.
Posted by Mountainsky (Member # 51857) on :
2 people were arrested in Hawaii for doing that. Is it worth it？ Now they'll have that probably on their record for life.
Jail and or a hefty fine...yea no thanks.
Medical and religious exemptions are the way to go. I was fine receiving the Covid vaccine. However next month I will need a medical exemption for the flu shot for my employer. I did it last year with no issue and probably always will need to. No big deal.
Posted by hadlyme (Member # 6364) on :
A simple flu shot sent me in a tail spin in 1999. It was the start of my journey to find out whats wrong!
My llmd in Scottsdale that has a lab by same name recommended me to NOT get the vaccine. He has received it, so it's not that he's against it. Just that we all do not know how we will react to it.
He said that there are many patients like myself that our story starts with a bad reaction to a flu shot.
And, pretty funny... All this time I've thought I had lyme and babesia.... and a few months ago I bit the bullet and did all of this labs' tests.
Yes, IGG to lyme, but also came back IGG positive to Rocky Mountain Spotted Fever. Who knew! AND... something else, off topic, but most of us, which we know.... are IGG positive to Epstein Barr, a virus.
Lab in Scottsdale is now studying viruses as one of our main concerns of why we aren't getting better. Sorry to get off topic.
Yeah, no.... no vaccine for me because of my weird body, and also that it hasn't been mid-term and long-term tested for side effects in the years to come. But we each have to do what's best for our mind and bodies.
Posted by LisaK (Member # 41384) on :
hadlyme, yes most people seem to not only have lyme, so it is extremely likely that people with lyme also have one or many other TBD and parasites as well.
Posted by LisaK (Member # 41384) on :
Hiker, rest assured I am not getting a fake card. I know people that have though.
I decided not to get the shot because I am afraid since I feel so bad all the time and my cytokines are already gone crazy. The jab may exasperate the storm, just as the actual virus would, so I am doing my best to stay safe without it.
And, none of my drs I see have suggested I get it. I see a rheumatologist, hepatologist, MCAS dr, LLMD, PCP, etc.. and while 2 have said do not get it, the rest have asked if I intend to get it and that was the end of the conversation.
I don't get flu vaccine becasue I am allergic to egg whites so they say don't get. I also did not vaccinate all my children on schedule after our 2nd child developed developmental delays after receiving the 2 year booster for MMR.
And our third got the rotavirus vaccine and had a reaction to it. This same child had the chicken pox vaccine (during a weak moment I had) and in 4th grade had shingles AND the chicken pox together.
All of them went to college and then were forced to vaccinate so they did at their own choice, and our one child , even after having covid-19, decided to vaccinate for it. They said they wanted their freedom because all the talk about not being able to do anything in cities or with traveling, etc.
That same child of mine was born with lyme and has history of illness and CFS. they refuse to see a LLMD (now 23) and just got symptoms that are hopefully just a cold but is getting covid test today.
My personal thoughts on vaccination is that I know people that were vaccinated that got covid afterward. a relative had it twice and was worse the second time - in hospital, etc. My mind tells me something isn't just right with it all and a so I go with my mind.
Vaccinations have their place, but the whole thing about showing a card is beyond total control in my eyes. After all, we al don't have to show proof of Polio or STDs do we???
Posted by terv (Member # 29410) on :
MountainSky,
I didn't know you could get a medical exemption. I guess I should have researched it. I was thinking of taking the religious path.
Do you get a card that is equivalent to a vaccine passport that has to accepted?
Posted by Lymetoo (Member # 743) on :
Do whatever you have to, terv.
Posted by unsure445 (Member # 15962) on :
My immunologist that I see for MCAS advised against MRNA vaccines as they can pack too much of a wallop to the immune system; shot #2. But...many MCAS patients have been fine with them.
My llmd said no J&J, doesn't recommend it to anyone, even those with balanced health. Again, many have been fine with them but efficacy is apparently quite low.
If Novavax would ever get approved it would be great, according to some functional med docs its the best one there is with no MRNA or adenovirus.
Do your research!
Posted by norin (Member # 52378) on :
Hi Jessig627,
As Lymetoo would say, "Opinions, not medical advice".
I was born with Lyme, now well into my 60's, have not been tested for MCAS, have NOT had vx, know many who had the vx, all of which had at least a minor reaction and know a number of people who had, or currently have CoV; presently including one of my best friends. Most were mild cases & a couple were quite ill. My friend has a history of HCV and continues to drink a lot, so, co-morbidities are present; not to mention she waited 7 damned days before contacting a Dr. for meds.
I was becoming ill in March, all the sx's of it, LLMD called in Z-pak which I started 12 hrs. later, was well the next morning, got tested via swab and antibodies, was negative for both; however, I bet if I got antibody test now, it would be positive, will let y'all know, but will be a while.
For the record, I do not take vx of any kind, nor any meds less than 5 yrs on market and prefer those over 20 yrs on market. No Flu shot in more than 30 yrs. and no Flu since then. So this is my personal position.
My LLMD of over 15 yrs. here in Houston, well-known, some like her, others don't; she has been extremely good to me and allowed me freedom to try various regimens and made great suggestions. She advised that J&J is the only way to go. It is the only one that does NOT have the spike protein and all the rest, including Novavax, have the spike. LLMD said the spike is THE major concern because you don't know where it will "break off"; could be anywhere. She is aware of the "alleged" clotting issue (her words, not mine) and none of her pts. have shown any sign of this. In her opinion, the pharma companies are in such rigorous competition that she thinks the slam against J&J is to knock down their sales in the field, being the only 1-and-done shot. Notice that Pfizer now has the lions share.
If you are uncomfortable with taking any of the vx, you might do well to get a Z-pak (azithromycin & HCQ) just in case. I cannot speak to the efficacy of Ivermectin, as I have not tried it and my friend who is ill had additional drugs, plus nebulizer to help her, so hard to distinguish which drug made the most difference.
It's a tough decision and I wish you all of Gods' guidance in making it.
P.S. - I have not been in tx for Lyme & Co's for a number of years.
[ 09-03-2021, 07:24 PM: Message edited by: norin ]
Posted by Lymetoo (Member # 743) on :
**In her opinion, the pharma companies are in such rigorous competition that she thinks the slam against J&J is to knock down their sales in the field, being the only 1-and-done shot. Notice that Pfizer now has the lions share.**
Amen on that one.
You made a lot of valid points IN MY OPINION.
Posted by norin (Member # 52378) on :
Hiya Lymetoo!
Yeah, Dr. was real adamant about that and IMO, money and control is what it's all about. All this just doesn't pass the smell test.
Posted by hiker53 (Member # 6046) on :
Of course Pfizer has the lion’s share. They were the first to get the vaccine out. Not saying that makes it a better vaccine but Novavax hasn’t applied for FDA emergency or full FDA approval. Pfizer is the only company ready with full data for a third shot.
But big Pharma and $$ certainly are a big factor not just with covid but with all health issues. (Just look at new Alzheimer’s drug that got FDA approval and probably doesn’t work according to the trials)
Sadly, there are more and more breakthrough covid cases. And more variants/mutants will arise because much of the world is not vaccinated and the variants come from other places.
I keep praying that all of us—vaccinated and unvaccinated—stay safe from covid.
[ 01-24-2023, 05:04 PM: Message edited by: hiker53 ]
Posted by Lymetoo (Member # 743) on :
"full data?"
Posted by norin (Member # 52378) on :
quote:Originally posted by Lymetoo: "full data?"
Yep, that's the one... TTYL Lady Lymetoo! Everyone have a great Labor Day Holiday!
Posted by norin (Member # 52378) on :
We "know" what we're being told and that's all. I live down the road from a large medical center in Houston and it's crickets. Not only that, but I've had 2 surgeries there in the last 30 days, so please don't presume to tell me what's going on in one of the biggest med centers in The US.
What I see are tyrants in my county offering people who are poor and uncomfortable getting the jab, cash ($150), to take it anyway; never mind that this type of coercion goes against most, if not all human rights laws of the past century, or longer. What's next, marmalade at the trains?!
What I've read were emails from my friends I've worked and traveled with for years from Canada (my former supervisor), Indonesia, Australia & New Zealand describing unbelievable bullying tactics used by their govt, police and military to behave & submit in ways against their will.
I'm not afraid of CoV; a viral infection that has a 98%+ recovery rate with no issues and I know enough people who've had it to be convinced of this. What I resent the hell out of is the heavy-handed treatment by elected officials, as if we have no right to make a decision.
If you're so afraid, then YOU stay home, or wear a mask everywhere you go. I plan to fight it kicking and screaming all the way.
[ 09-04-2021, 10:30 PM: Message edited by: norin ]
Posted by hiker53 (Member # 6046) on :
Norin, I don’t think anyone here presumed to tell you about what is going on in a big medical center in Houston. If you don’t believe that there are more unvaccinated covid patients in the hospital than unvaccinated then you are living under a rock or have bought into conspiracy theories.
My nurse friend at our local hospital works with covid patients so I have an idea of what is going on.
And Norin, what I know is I have had 3 friends die of covid and have several friends who are long haulers.
And yes, I do wear a mask when I go to the store or some place inside not because it protects me so much as it protects YOU!
Even George Washington mandated his troops get vaccinated from small pox. Otherwise we might still be part of Great Britain.
[ 01-24-2023, 05:06 PM: Message edited by: hiker53 ]
Posted by norin (Member # 52378) on :
Hiker,
I'm sorry about your friends and I have long C friends and friends who are nurses as well. So, what's next, a duel? Who has this and who has that?
And Hiker, it's interesting how you don't ever seem to address the use of force or coercion in this matter and a persons right to say NO. It might not matter to you but it matters to me and my neighbors.
You can resent until hell freezes over and assume I don't care about the community I live in; I'm sure we're both grateful you don't live here. Oh, and George Washington is dead and gone; pretty sure that's not a conspiracy theory.
Stay well and Bye!
Posted by Lymetoo (Member # 743) on :
We are being lied to .. everywhere.
Please wake up.
Posted by hiker53 (Member # 6046) on :
So, Lymetoo, you are saying that Norway is lying. Denmark is lying. Germany is lying. Japan is lying. Iceland is lying. South Africa is lying. Taiwan is lying. Canada is lying. Peru is lying,
Sheesh. The whole world is lying?
Maybe a moderator ought to lock this thread since it is getting ridiculous, Lymetoo.
Oops, you are a moderator. Posted by LisaK (Member # 41384) on :
Powers that be......
yes, they all lie.
becasue they all want power.
simple deduction.
Posted by Lymetoo (Member # 743) on :
It's all the same media.
Posted by Phoiph (Member # 41238) on :
An informative review of people's personal experiences with Lyme and Covid "vaccine" reactions. Scroll down to blog section:
The point that seems to be missed, is that the Covid "vaccine" does not keep one from catching or spreading the virus. It only proposes to reduce the severity of illness in some people.
This is a very different scenario than with other vaccines, like smallpox, where the vaccine stopped the spread.
Therefore, the only one who the vaccine will possibly protect, is the person who receives it.
So the question becomes...WHY do the forces that be care SO much that EVERYONE, even those who are not vulnerable, receive the vaccine, to the point of mandates and coercion...if it does not protect the community?
Does that not raise questions re the motives involved?
Posted by norin (Member # 52378) on :
Phoiph:
Thank you for posting that article!
I absolutely agree. What TPTB are doing just doesn't make sense for a vaccine and re: your article above, I'm in that lack-of-trust crowd too.
Posted by lymewreck36 (Member # 4395) on :
Lyme and. Companions 20 plus years, MCAS, vaccinated and boosted. Normal responses. A very personal decision for each of us.
Posted by dbpei (Member # 33574) on :
I don't have a DX of MCAS but I have struggled with Lyme for years. I have been fully vaccinated and boostered without incident. After over 2 years of trying to avoid Covid by strict masking and doing everything recommended, I did eventually get sick with it this past summer. I am fortunate to be back to my baseline after about 2 weeks of illness.
Before, during, and after Covid, I was taking many of the recommended anti-inflammatory supplements such as Vit D3, melatonin, turmeric, Vit. C, and herbs such as lion's mane, sida acuta, Japanese knotweed, Chinese skullcap and more. I also take LDN (low dose naltrexone) which might have helped me to get through both the vaccines and the illness itself.
Following each vaccine, I had mild flu-like symptoms for a day or so, but I did not feel that my Lyme symptoms worsened following the initial reactions. I realize it is a personal decision, but for me, the risk of getting deathly ill from Covid was a much bigger threat than the side effects of the vaccines.
Thanks, dbpei, for this information.
Posted by Robin123 (Member # 9197) on :
Read the book, "The real Anthony Fauci." It's now been made into a Jeff Hays film. Showing free for two more days, if anyone wants to google for it.
Posted by LisaK (Member # 41384) on :
I recently heard reports that they are now saying (from data) that vaccinated people are the ones mostly dying from covid now.
now meaning- I heard this last month on the radio, so I didn't see al ink and can't find one to to concussed stupid brain , but if anyone has that info please share, thanks
Posted by helloitsme2 (Member # 52656) on :
Lots of links could be posted in Off Topic
Posted by Phoiph (Member # 41238) on :
LisaK,
Here is an article you may find relevant to that topic. It discusses why this may be true:
At the end of the article, it states: "To circle back to where we began, it seems the reason so many jabbed individuals are now contracting COVID and other infections, and are dying from them, is because Type 1 interferon is suppressed. That suppresses your immune function, making you more prone to contracting infections."
Posted by Phoiph (Member # 41238) on :
Here is the original publication. Food for thought:
“Innate Immune Suppression by SARS-CoV-2 mRNA Vaccinations: The Role of G-quadruplexes, Exosomes and MicroRNAs,” Stephanie Seneff, Ph.D., and Drs. Peter McCullough, Greg Nigh and Anthony Kyriakopoulos explain how the COVID shots suppress your innate immune function, and how they may cause neurological diseases":
hiker, I am not saying that the vax ppl are getting MORE covid, but that they are dying more frequently than unvax ppl.
like I said I don't know all the facts, but I do recall it was a european study
Posted by Robin123 (Member # 9197) on :
When I was at the ER early on during the covid time, I think in the spring of 2020, an ER doc took one look at my allergy list and said I was not a candidate for any vaccine! I have severe MCAS.
I have since been studying its impacts and have concluded that it is not safe to do the vaccine. They say that everyone develops microclots such that the shot is being referred to as the "clotshot." It also causes myocarditis that people either survive or they don't.
Posted by Lymetoo (Member # 743) on :
Keep your eyes on the Twitter Files this coming week.
Posted by hiker53 (Member # 6046) on :
Overall, the vaccine is very safe. Admittedly longer term studies will need to be done.
So many people have been vaccinated around the world that the data shows it is a pretty safe vaccine.
But if someone doesn't want to get it that is certainly their choice.
The above article explains why vaccinated people are dying from covid. The basic reason is that 80% of Americans have been vaccinated with at least one dose of the covid vaccine.
Thus since most Americans have been vaccinated, it would seem logical that more deaths are now occurring among the vaccinated (mainly elderly). But vaccinated does not mean boosted. And the changing variants can evade the vaccine.
I don't trust Twitter. Never have and never will, especially now that Musk is in charge.
[ 01-24-2023, 08:25 PM: Message edited by: hiker53 ]
Posted by Robin123 (Member # 9197) on :
I'm not really on Lymenet to spend time on the vax situation - I view this site as being more about aupport for Lyme and co's.
But I will list a link here of a recently published peer-reviewed study that discusses what the shots are doing.
Hmmm - my screen is blank when I go to read it. I was able to download it in the middle of December and make copies. If anyone is super-interested, I can send you a copy if you PM me your contact info.
Ok, here goes - I like to read scientific studies about what's going on with anything. This one was published on Nov 27, 2022 in the journal Clinical Research in Cardiology, the official journal of the German Cardiac Society. The study was done by a team of 6 medical pathologists at the Heidelberg University Hospital in Heidelberg, Germany.
Quoting from the article, "The team autopsied 25 victims of different ages who were found dead at home within 28 days of vaccination. They looked at their heart tissue under the microscope to find out why these people died of cardiac rhythmic disruption when they had no apparent underlying heart disease.
"...these mRNA-vaccinated patients suffered from heart damage because their hearts were attacked by their own immune cells. The immune attack on their own heart cells then leads to their damaged hearts beating so many times per second that, once the tachycardia unexpectedly started, they died in minutes.
"Our findings establish the histological phenotype of lethal vaccination-associated myocarditis. Histological phenotype means direct observation of microscopic tissue."
The article is 3 pages long and explains what they saw in the tissues. Explains all the people, especially athletes, suddenly dropping to the ground.
The immune system is attacking body tissue because the mRNA in the vaccines induces the body to make spike proteins, which are inflammatory.
Also, the VAERS site - Vaccine Adverse Event Reporting System monitored by the CDC, and whose numbers are considered to be only 1% of actual numbers - now has over 10,000 myocarditis adverse events reported.
[ 01-21-2023, 08:11 PM: Message edited by: Robin123 ]
Posted by Phoiph (Member # 41238) on :
Hiker53, At this time, no one can accurately claim "Overall, the vaccine is very safe", unless you have a crystal ball.
It may take years to realize the full impact mRNA therapy will have on the human population. We are only seeing the tip of the iceberg now, and it's concerning.
Posted by Robin123 (Member # 9197) on :
Awesome - you found it! So happy it's still here!
Posted by Phoiph (Member # 41238) on :
The topic is "MCAS and the Vaccine", and I personally feel any discussion involving mRNA therapy safety is relevant.
Again, since we don't know the long-term effects of mRNA therapy (especially multiple shots), we can't definitively say that Covid causes more damage, just that it may cause damage more overtly and/or rapidly in most cases.
Posted by Robin123 (Member # 9197) on :
I responded to the title of the thread. I have MCAS so I feel my response is appropriate.
We don't know that people aren't coming here because of a covid discussion. The topic is affecting everyone in the world.
It's not conspiracy. We have data from the US VAERS site, UK's Yellow Card, Europe's EudraVigilance and more showing huge numbers of injuries and deaths from the shots.
We have doctor sites such as FLCCC - Frontline Covid Critical Care Alliance, World Doctors Alliance and more reporting on injuries and deaths. We have top doctors in the world, like Dr McCullough, Dr Levy, Dr Ealy, Dr Buttar, Dr Northrup, Dr Merritt, Dr Thomas and many more reporting on injuries and deaths.
We just had an online summit by Jonathan Otto, "Brave Revealed," with interviews with health experts and patients. 12 sessions, each took me several hours to watch. That summit has a tremendous amount of information about what is happening to people who took the shots as well as the shedding going on from them and affecting nonvaxxed people.
We have sites such as Children's Health Defense and The Highwire reporting on injuries and deaths.
We have insurance companies and actuarial sites reporting on excess deaths, supposedly 40% more excess deaths in the 18-64 years range as a result of these shots.
We have pathologists reporting and showing to the public huge bloodclots coming out of the blood vessels of deceased people! They can't even embalm them!
We have D-dimer and triponin tests showing microbloodclots in just about everyone who's done the shots.
We have vaxxed people dropping dead everywhere, including dying in their sleep.
There is an explosion of cancer cases now. The shots are thought to lower the immune system!!
We have pregnant women losing their babies and a drop in childbirths worldwide after the shots. The shots are affecting fertility. What will that mean for all the young people getting the shots?
What caught my attention early on was reading about an OB-GYN in Florida who died in January 2021 two weeks after he took the shot from having no platelets left. And I thought, no platelets left?! They stop bloodclotting. So even back then, I was wondering about what was causing all the bleeding. And now we know - inflammation.
This is information, not fantasy. I suggest you start to take a look at what is being reported. I am not going to back down from reporting what is going on. If it's going on, we report it, just as if it's about Lyme and co's - we would report that info too. No difference. Health is health, no matter what the topic. If it's helping people, we say that. If it's harming people, we say that. And this situation is clearly harming people.
Recently the CEO of Pfizer said they didn't even test the vaccines to see if they prevented virus transmission. And they have no liability. What product gets no liability especially if it's a risky one?
[ 01-22-2023, 02:00 AM: Message edited by: Robin123 ]
Posted by Phoiph (Member # 41238) on :
Well stated, Robin123...you've done your homework!
Posted by hiker53 (Member # 6046) on :
[“Well, I've scoured the internet and read nothing but conflicting info.
I've had Lyme for years, was diagnosed with MCAS in the fall.
I am curious if there are others out there like myself that have gotten the vaccine or were advised against it.
My LLMD has advised me to NOT get the vaccine.
Not looking for a debate, just an honest conversation or story of experience.
All answers and opinions are welcome!
Cheers to good health for all.”]
The remarks in quotes were written by the original poster of the thread. We have done this poster a disservice as most of us have not given our experiences with the vaccine and MCAS.
The poster wanted experiences. We failed.
Jessig627 said he/she wasn’t looking for a debate. We failed.
And the person who started this thread, Jessig627, hasn’t been back posting on Lymenet since the day she posted this thread. Posted by Phoiph (Member # 41238) on :
"Failure is success in progress."
~Albert Einstein
Posted by Lymetoo (Member # 743) on :
Hopefully, Jessig listened to her LLMD.
Posted by hiker53 (Member # 6046) on :
I think you all have missed the point.
Jessig asked for our experiences with the covid vaccine and MCAS.
We (and I include myself) just debated the safety of the vaccine, each rooted in our own views.
We did Jessig a disservice. Can't you all see that?
We may have lost a member of Lymenet. We already have low numbers of people coming to Lymenet and we may have driven one away.
Posted by Phoiph (Member # 41238) on :
Your point has not been missed, Hiker53.
With all due respect, maybe you have missed the point of this forum. It is not strictly for Q & A, but for discussion and the exchange of information.
You may not agree with the discussion or see how it relates to the topic, but others may welcome this information and find it helpful.
Is there a reason you don't want others to have access to information?
Calling the thread "off topic", a "disservice", "failed", and making assumptions that the poster left because she was "driven away" frankly sounds like an effort to shut down a discussion that makes you uncomfortable.
Truth?
Posted by hiker53 (Member # 6046) on :
Not truth, Phoiph. Have said multiple times that if you do not want to get the vaccine that is your choice and I certainly respect that.
And I am certainly aware that some people cannot get the vaccine for various health reasons.
I just feel like we strayed from the poster’s intent.
The poster was just seeking experiences from those who have MCAS and had gotten the vaccine. We didn’t help with that. We told the poster all the reasons to either get the vaccine or not get the vaccine. Very few of us told her experiences with MCAS and the vaccine.
So, I feel like we did not honor the posters wishes which were not to debate this, and this clearly turned into a debate. If you can’t recognize a debate…
I feel like I did not honor the posters wishes, except to say that AK has MCAS and have gotten the vaccine with no issues. Then I should’ve just shut my mouth because I don’t have MCAS.
And so I guess I feel like those of us who have MCAS, but did not get the vaccine, shouldn’t have commented.
You don’t have to agree with me on this. I know Lymenet is an open forum but I feel like the thread was hijacked.
[ 01-24-2023, 08:27 PM: Message edited by: hiker53 ]
Posted by Phoiph (Member # 41238) on :
Here is a forum where people with MCAS discuss their experience with mRNA therapy:
I commented because I was specifically told by ER docs and my Lyme doc not to go near the vaccine due to my many allergies and my severe MCAS. I think it's a life-or-death issue and that's why we need to talk about it.
There will be a nine-part online summit series starting Monday January 30, www.absolutehealingseries.com that anyone can sign up to watch for free. They will be discussing the negative health impacts of the vaccines and what people can do to heal from having taken them. The good news is, there are a lot of remedies and we just need to learn about them and decide what we want to do.
Posted by Phoiph (Member # 41238) on :
Dr McCullough talking about vaccine harm. He cites research and stats.
Posted by Lonestartick (Member # 2151) on :
Please note, Lyme patients, especially those who are sensitive or have MCAS have valid concerns regarding Covid 19 or any vaccines.
These decisions should be made with the medical professional most familiar with the individual patient’s risk factors and current condition.
I am a recovered patient and an old-timer here. This forum was important to my healing, so I have continued to refer patients here for desperately needed and trustworthy Lyme disease information.
Recently, I received disturbing feedback from those I have referred.
One was an RN with MCAS, but her social history indicated she should research LD. Another friend with a PhD in Biochem and a MS in Immunology immediately rejected the validity of information here.
I don’t know why the others moved on. It saddens me to know they will look no further when their suffering is likely due to Lyme.
I can’t help but wonder if they if they represent others seeking desperately needed Lyme disease information who move on silently, never post and will look no further.
How many visitors or guests never post? How many people post once, then never again?
Are these numbers different than in the past? The traffic seems slower than the Lyme disease forums I looked at yesterday that someone suggested by PM.
When moderators posts known conspiracy sites such as Infowars, Global Research Site, which is a conspiracy website in the main medical forums, it dilutes the credibility of Lyme information,
especially to medical professionals who still face the same challenges everyone here has when seeking diagnosis and treatment.
There should be room for open discussion and differences in opinions, but Off Topic seems best suited to many of the links posted everywhere else on the site, lest they deter Lyme disease patients from finding and trusting information about Lyme disease.
Robin, posted a valuable link Inspire group for MCAS Covid 19 vaccine discussion the relates to this topic. I’m sure that will be helpful to many, so I will list it below, lest it get lost in discussion.
If there is a list of helpful links on this site, it might be a good idea to include that one.
It probably needs its own post on this topic it isn’t lost in the discussion because it would help to answer the original poster’s question.
I personally feel the discussion in this thread is relevant to the topic, timely, and valuable.
Since some others strongly disagree, why not simply start a new topic (IN MEDICAL--since this is a medical issue) dedicated to discussion of information and issues surrounding mRNA therapy?
If other threads veer wildly off topic in that direction, they can be referred there. Conversely, the individuals who are bothered by such discussion or debate can easily avoid that thread.
Posted by hiker53 (Member # 6046) on :
Personally I think the mRNA vaccine issue belongs in Off Topic.
Sometime ago, Jennifer or a moderator had the Covid vaccine discussions moved to Off Topic.
I think some of us feel this Covid vaccine discussion is turning off people who pop into Lymenet.
They see the controversy and see some of the misinformation and don’t come back. See Lonestartick’s comment about this.
I talked today with a Lymenet friend who is fed up with the vaccine debate and misinformation and may leave Lymenet. So, another veteran Lymenet poster who has valuable insights to Lyme disease may leave.
It is the misinformation that bothers some of us.
Certainly some can’t get the Covid vaccine or any vaccine and shouldn’t. But we are not the ones to decide that.
The initial poster asked for experiences with the vaccine. She said her LLMD was against it.
I called my old LLMDs office and he had no issues with the vaccine.
Why don’t you open a thread in Off Topic or a Facebook page dedicated to this?
Posted by Phoiph (Member # 41238) on :
Because medical topics belong in "Medical", not buried in "Off Topic" where people discuss "Seeing Numbers in 3's" or "Russia Banning Oil Exports".
Posted by Phoiph (Member # 41238) on :
Since the truth is yet to be realized regarding mRNA therapy, who is qualified to determine what is "misinformation" or "conspiracy theory"?
If someone is "bothered" by "misinformation" on the subject, then what they are really bothered by is a difference of viewpoint or opinion.
Sidelining information due differences of opinion is one step closer to censorship.
Posted by hiker53 (Member # 6046) on :
This is a Lyme site not a Covid vaccine site. This topic has been beat to death. People are avoiding Lymenet due to these kinds of threads.
And you will notice in Off Topic the majority of the posts tend to be from one person. Jennifer has told her it is okay to post that kind of junk in Off Topic. I don’t agree with that decision, either, as it doesn’t relate to health.
If you search Off Topic you will find some of Lymetoo’s vaccine posts although some vaccine posts have been deleted due to totally false information. (Not all false info was Lymetoo’s)
There are at least 9 threads that remain in Off Topic related to the Covid vaccine.
And Norin who began posting in Off Topic became Helloitsme and then Helloitsme2 and now Working3. She deleted a lot of her posts and some were Covid vaccine related.
I am not afraid of information. I am not trying to censor. But I cringe when I see members posting Infowars as a credible site for truthful information about the Covid vaccine.
This is a LYME site. It is not a Covid vaccine site and it is not a general news or political site (which Off Topic has become).
Below in the brackets are the rules for Off Topic. The Covid vaccine fits perfectly into that forum. The stuff working3 posts does not but my complaints to the moderators about what is posted in Off Topic go by the wayside.
[This forum is for general discussions of broad interest to the LymeNet community. Please avoid contentious political, religious, or other topics that have little to no relevance to Lyme disease, health & wellness, or other themes for which this community was built]. These are the rules for Off Topic.
I asked Jennifer to weigh in but have yet to hear back from her.
[ 01-26-2023, 11:31 AM: Message edited by: hiker53 ]
Posted by Lonestartick (Member # 2151) on :
I don't know if the original poster will see this. I hope she found the information she was searching for because she hasn't posted since.
A patient's own LLMD would be able to offer advice based on personal risks, benefits and would know how other Lyme patients are tolerating vaccines.
Dr. C has shared Lyme specific information at the link below and on other Lyme and Covid tabs at the website below:
*Edited to add, Dr. C has a podcast that discusses Lyme patients and the Covid 19 vaccines in detail. This episode was interesting and there are others on his channel.
[ 01-27-2023, 09:42 AM: Message edited by: Lonestartick ]
Posted by aklnwlf (Member # 5960) on :
I've had Lyme and co's and actually had MCAS before Lyme. I have severe anaphylaxis and other symptoms from MCAS.
I'm caring for my 91 year old mother and 2 of her doctors stressed the importance of me getting the Covid vaccine.
I've never had vaccines outside of my childhood ones in the 60's and tetanus shots. Did have shots for Impetigo that me and my siblings contracted while overseas.
My first 2 Covid vaccines were at my allergist's office since I was very scared that I'd have anaphylaxis. My first shot was an incremental one to make sure I'd have minimal side effects if I did react. My second one was a regular full vaccine.
I've had 2 Covid vaccines and 3 boosters and outside of a bad headache (only with the second shot) and a sore arm thankfully I've had no reactions or side effects to date.
That's been my experience.
Posted by Bartenderbonnie (Member # 49177) on :
Lonestartick
THANK YOU for posting TRUSTWORTHY CLINICAL and STATISTICAL information from well respected LLMD’s!
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