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Posted 1/23/2021 2:54 AM (GMT 0)
I'm sure this topic has been well covered, please feel free to direct me to past threads.

I'm wondering if anyone has:
a) already gotten a vaccine - any reactions?
b) intends to get the vaccine
c) has a no way/no how opinion and why.

thanks bunches - I'm really not sure what to do.
Posted 1/23/2021 3:07 AM (GMT 0)
I'm wondering if anyone has:
a) already gotten a vaccine - any reactions? haven’t had it
b) intends to get the vaccine probably not
c) has a no way/no how opinion and why.
I may have to get it - eventually - as I work in an elderly care home

I never get the yearly flu shot either.

I am waiting to see how the people who have had their shots do...before I make a firm decision.
Posted 1/23/2021 11:13 AM (GMT 0)
I spoke with Dr K this week. He has a very sharp understanding of the immune system.

He told me with a traditional vaccine you are injecting antigen into your body, which up-regulates ALL antibody production in an attempt to mobilize the immune system to start creating antibodies to said antigen. This can very bad for people with lyme/autoimmune.

He said with the mRNA, you are injecting RNA into the cell, which then uses the cells hardware to create the antigen from the RNA instruction and the immune system can then respond. He feels that this is a much more controlled process than a traditional vaccine, and he says the data seems to indicate this as well.

He feels that it is safe for Lymies to get an mRNA vaccine (i assume he would not feel the same about some of the later non-mRNA vaccines that will come out later), and prefers the Moderna one. I was on the fence, but I trust Dr K.

UpBeet, how is your neuropathy?

Post Edited (dcd2103) : 1/23/2021 3:02:31 PM (GMT-7)

Posted 1/23/2021 4:00 PM (GMT 0)
Something else to consider.
https://www.cbsnews.com/news/south-africa-covid-strain-resistance-antibodies-coronavirus-vaccine-latest-research/
Posted 1/23/2021 5:04 PM (GMT 0)
I got the first shot of the COVID vaccine for work.

The night of and the day after, I had a sore arm, fatigue, and light flu-ish aches and temperature fluctuations. After that, I was fine and went back to normal.

Interestingly, while I as reacting to the vaccine, my other, regular symptoms nearly disappeared into the background. They resurfaced as the vaccine effects wore off. It's almost like the vaccine temporarily gave me relief because it gave my immune system something else to "focus" on.

Granted, I am doing pretty well overall now, just dealing with what I believe is a Bart infection (hopefully) close to being on its last legs after nearly a year of herbs. Not sure what it would be like for someone who is starting from a less favorable baseline.
Posted 1/23/2021 9:45 PM (GMT 0)
dcd2103, that is so great to hear, thanks for sharing!
Posted 1/23/2021 10:05 PM (GMT 0)
a) already gotten a vaccine - any reactions? Nope

b) intends to get the vaccine- No

c) has a no way/no how opinion and why.
I have a no way stance for ME but it's totally an individual choice! I understand people's rationale for wanting it. Personally, as someone dealing w/ a chronic condition in a decent flare there are too many unknowns. This type of vaccine is the first ever of its kind (mRNA) and long term effects, or effects on certain populations with certain preexisting health conditions are completely unknown. If the day comes that I contract the virus, I trust that my own immune system will handle it.
Posted 1/24/2021 2:03 AM (GMT 0)

1yrinVA said...
I got the first shot of the COVID vaccine for work.

The night of and the day after, I had a sore arm, fatigue, and light flu-ish aches and temperature fluctuations. After that, I was fine and went back to normal.

Interestingly, while I as reacting to the vaccine, my other, regular symptoms nearly disappeared into the background. They resurfaced as the vaccine effects wore off. It's almost like the vaccine temporarily gave me relief because it gave my immune system something else to "focus" on.

Granted, I am doing pretty well overall now, just dealing with what I believe is a Bart infection (hopefully) close to being on its last legs after nearly a year of herbs. Not sure what it would be like for someone who is starting from a less favorable baseline.

I've been acutely sick one time since I have had chronic Lyme and I experienced the same thing. The onset of the illness was awful. It woke me up from a dead sleep. I got really nauseous and uncomfortable feeling and then vomited my mind out. Started getting chills and shaking. Within an hour or two I had a fever. Fever lasted for a few days. During those days I felt great except for the fever lol. It's weird to say but true.
Posted 1/24/2021 2:15 AM (GMT 0)
a) already gotten a vaccine - any reactions? Not yet
b) intends to get the vaccine: Yes, at some point. I might wait until I see more opinions from respected LLMDs or vaccine experts
c) has a no way/no how opinion and why. ......It's really not a hard decision in my opinion. Even at my age where death from COVID is a extremely small chance it's still much higher than a death from vaccine is. Similarly, the same mechanism that worries people about vaccines, autoimmunity, is possible with "natural" infection. Unless you plan on staying in your house for years and years you will have a decent chance of catching COVID at some point. Additionally, if I'm convinced that the vaccine is not a much higher risk for my Chronic Lyme situation I feel a sense of societal duty to take the vaccine. I've had to take many vaccines due to my past work while sick with Lyme. Never had an issue. If everybody decides to let others run into battle while the timid stay behind then we will never get past this moment. Vaccines, like antibiotics, have been gamechangers for humans. As long as I can I'd like to do my part.
Posted 1/24/2021 3:28 AM (GMT 0)
Mrna vaccines are new technology with zero long term studies. I try to never take a new drug. I think they actually havent completed phase three trials yet
Posted 1/25/2021 12:57 AM (GMT 0)
Thanks everyone for your responses - This is a tough one for most of us, especially since both Lyme and everything we do affects us each so differently. I will say that I've had only vaccine (flu 3 years ago) in the last 10 years with the exception of a tetanus and they both went fine. Originally I thought I would wait it out but long term effects if any could be years down the road. I fall in the 3rd tier so it will be probably April before I can my first shot anyway. I'm doing pretty well right now, I hope that remains in April.

Does anyone know if Lyme is considered (recognized) as a co-morbidity?

dcd2103 - Thanks for sharing Dr. K's opinion, that was helpful. I am hoping for the Moderna one but doubt that we get a choice when the time comes. Dr. H in SF advises similarly but leaves the decision up to the individual. Is Dr. K in Seattle by any chance?

Neuropathy .....argh. Since it is combined with Piriformis Syndrome and involves my lower back, leg and foot, really difficult to separate except by feeling and location if that makes any sense. But your encouragement to hone in on my diet was spot on, as soon as I fall off I know it. I've also started Alpha Lipoic Acid IV's which is helping my hands/arms and plan to begin BP-157 sometime soon as well. Thanks for checking in on me. How are you doing?
Posted 1/25/2021 4:08 PM (GMT 0)
Hey UpBeet, I'm glad youre feeling a bit better. Keep me posted on the ALA IVs, thats very interesting. I was just reading Dr Titlebaum's Pain Free 123, and he recommends a cocktail of ALA, b12, b6, l-car and inositol to aid in healing neuropathy. I'm starting to think that even if your pain isnt caused by a vitamin deficiency, if you have a deficiency in any specific vitamins and/or antioxidants, your nerves are going to repair that much more slowly, so it is important. As such, I actually just sent away for a SpectraCell micronutrient test to test for exactly this. My b12 is always < 400, which may be holding me back.

I plan on completely re-writing that Primer, I did not organize it very well or delineate how you should approach neuropathy due to immune damage vs metabolic insults. Plus I have more info to add.

In general I'm doing so/so. I made great gains with ketosis in the first few months, but I've since plateaued. The burning pain is greatly reduced, but it's this dang buzzing i cant quite get rid of. I've heard that this is the last thing to go, and my sense is that i've made the easy gains so far, and now i have to be diligent as the remaining symptoms will take several years to completely heal. The immune system is in good shape, but I need to reverse the damage to the nervous system basically, which takes time.

Speaking of damage to the nervous system, I've also been researching the similarities between CRPS and small fiber neuropathy. I'm starting to think that these are just different variants of the same disease. And that means that a lot of the same mechanisms that are at play in CRPS are at play in small fiber, such as glial cell activation, spinal cord changes, nmda receptor activation, sympathetic nervous system damage, etc. I think this explains why SFN is so hard to treat and resistant to therapy, because they havent recognized these mechanisms that are at play. One of the best tools for healing CRPS is ketamine infusions, so I've been going for these recently. I'm goin for infusion number 3 of 6 today. It dramatically reduces the pain in the days after an infusion. The question is, does it have any long-term neuroprotective effects for SFN? Given my theory, I'm hoping it does. Will keep you posted.

Post Edited (dcd2103) : 1/25/2021 9:13:40 AM (GMT-7)

Posted 1/27/2021 4:55 AM (GMT 0)

dcd2103 said...
I spoke with Dr K this week. He has a very sharp understanding of the immune system.

just for the record: nobody has a sharp understanding of the immune system. if we have had that knowledge, we would not have had all these autoimmune diseases of unknown etiology around us.

no disrespect intended towards your doctor
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