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Severe reaction to covid vaccine

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Posted 2/11/2021 6:52 PM (GMT 0)
Hey, I wouldn't beat yourself up about it. It's not an easy decision imo and you could only make it with the info available.

Plus you can't really compare to an alternate reality where you didn't get the vaccine. Would you have gotten covid? Would covid have given you a similar relapse or worse?

How is your heart rate today? Is the neuropathy any better?
Posted 2/11/2021 7:10 PM (GMT 0)

cherylfelice said...
Thank you Denise! I really appreciate it. I def already had chronic PTSD, so now there has been a lit match thrown at me. I am so angry that I gave in and took the vaccine. Over the last year, I have known people who have died from COVID and watched the immense suffering on the news. It scared the crap out of me, So did the vaccine. I listened/read a few LLMD's (such as Marty Ross) who said generally Lyme patients should be fine with it.

How were you to know? Every time you turn on the tv - they're talking about getting the vaccine. ..and the vaccine will save us. Don't beat yourself up over it....
Posted 2/11/2021 7:59 PM (GMT 0)
I have been corresponding with this homeopath who claims she has an antidote. My BS antenna is going up. thoughts?
Posted 2/11/2021 8:04 PM (GMT 0)
Hi Cheryl,

Ask the homeopath if she will tell you what the ingredients are in the antidote. If she won't tell you then stay away from her. If she does tell you then match the ingredients with Dr. Mercola's list.

Girlie, Dr. Mercola has a list of people who he states should not get the vaccine and one group are people with lyme. It's a very interesting list. I'll see if I can find it.

Denise
Posted 2/11/2021 8:48 PM (GMT 0)

Deejavu said...
Hi Cheryl,

Ask the homeopath if she will tell you what the ingredients are in the antidote. If she won't tell you then stay away from her. If she does tell you then match the ingredients with Dr. Mercola's list.

Girlie, Dr. Mercola has a list of people who he states should not get the vaccine and one group are people with lyme. It's a very interesting list. I'll see if I can find it.

Denise

Thanks!

My LLMD has recommended NOT getting it... not just those with Lyme.
Posted 2/11/2021 9:08 PM (GMT 0)
The homeopath said the only ingredient is a dilution if the actual Moderna vaccine
Posted 2/11/2021 9:14 PM (GMT 0)
Listen to your "BS antenna"
Posted 2/11/2021 9:21 PM (GMT 0)
Yeah, unfortunately I think you are right
Posted 2/19/2021 4:14 AM (GMT 0)
Cheryl, it's been about a week.. how are you feeling??
Posted 2/19/2021 4:53 AM (GMT 0)
Tks for checking in! Unfortunately, feeling awful at the moment . Every day is different . I thought I was getting a bit better. Neuropathy is now getting worse and at the moment I’d also effecting verge back of my neck which is super scary! I am thinking g I might have Guilin barre
Posted 2/24/2021 6:03 PM (GMT 0)
cherylfelice - how are you feeling now?
Posted 2/26/2021 7:52 PM (GMT 0)
Hey,
Here's an update..not a good one , unfortunatley.
A bit of backstory on me....prior to lyme and co's, i was poisoned by Levaquin in 2012, for those who may not know it is a neurotoxic abx. the Levaquin nearly killed me...it brought out dormant lyme and Bartonella and mycoplasma. Anyway, I had made some progress over the years. I was not FINE, but I was fuctional. After the vaccine, I have been getting progressively worse. At first, symptoms were waxing and waning and changing. It started as mostly really scary high tachycardia and panic mostly in the middle of the night. Then the neuropathy started...started with just hands, feet and a bit in arms and lower legs. Now the neuropathy is bodywide and changes day to day. But NOW I am also having crazy muscle weakness in legs, arms..sore middle back.I have never experienced this before! It is very scary. I went to a nonlyme literate neurologist who thinks I may have Chronic Inflammatory Dymyelinating Polyneuropathy...went for an EMG (aka TORTURE test)....had to abandon after 3 shocks...I was crying in pain! Next they want me to go for a brain CT , followed by a spinal tap (both next week) to check for CIDP. Oy...part of me thinks it's ALL a massive lyme flare, but because it's getting WORSE, I feel I have no choice but to jump through these hoops. I am open to all/any suggestions.
Posted 2/26/2021 8:10 PM (GMT 0)

cherylfelice said...
Hey,
Here's an update..not a good one , unfortunatley.
A bit of backstory on me....prior to lyme and co's, i was poisoned by Levaquin in 2012, for those who may not know it is a neurotoxic abx. the Levaquin nearly killed me...it brought out dormant lyme and Bartonella and mycoplasma. Anyway, I had made some progress over the years. I was not FINE, but I was fuctional. After the vaccine, I have been getting progressively worse. At first, symptoms were waxing and waning and changing. It started as mostly really scary high tachycardia and panic mostly in the middle of the night. Then the neuropathy started...started with just hands, feet and a bit in arms and lower legs. Now the neuropathy is bodywide and changes day to day. But NOW I am also having crazy muscle weakness in legs, arms..sore middle back.I have never experienced this before! It is very scary. I went to a nonlyme literate neurologist who thinks I may have Chronic Inflammatory Dymyelinating Polyneuropathy...went for an EMG (aka TORTURE test)....had to abandon after 3 shocks...I was crying in pain! Next they want me to go for a brain CT , followed by a spinal tap (both next week) to check for CIDP. Oy...part of me thinks it's ALL a massive lyme flare, but because it's getting WORSE, I feel I have no choice but to jump through these hoops. I am open to all/any suggestions.

Sorry to hear you are suffering!

I had an EMG and NCS - one was little pads put on various spots on my left arm... and the other one was needles stuck into several areas of my arm. I don’t recall which one was the EMG and which was the NCS
Horrible tests!!!


I would discuss this with a LLMD - and/or see how you respond to treatment - ie herx or feel better.

I am a chicken when it comes to procedures - I’m not sure I’d do a lumbar puncture unless it’s absolutely necessary
Posted 2/26/2021 8:43 PM (GMT 0)
I'm so sorry to hear that you are going through this! Something similar happened to me after I had a cold-like virus a couple of years ago. Neuropathy (including pain and numbness mainly in hands, arms, feet, and face), weakness (feeling almost like I'd just worked out super hard, mostly in my thighs and upper arm muscles, sometimes unable to walk), and tachycardia (was hospitalized for this one, POTS flaring badly). I refused the EMG test several times because it just sounded awful, and the lumbar puncture, but I did have a non-contrast brain MRI (normal). My clinical diagnoses, depending on which doctor I asked, were: post-viral syndrome, post-viral myositis, Bartonella flare, EBV flare, adrenal crash, and cytokine storm causing widespread neurological inflammation. So no one was much help! I used a wheelchair whenever I left the house for five months. It was awful, and I was really scared. I recovered very quickly after beginning DNRS limbic system retraining and MCAS treatment.

I hope that you find a way to reverse this upsetting trend! Please keep us updated!
Posted 2/26/2021 8:48 PM (GMT 0)
Cherylfelice,

After reading saraeli’s last post, it reminded me of TUDCA Plus. After starting it, whole body numbness started going away.
Posted 2/26/2021 8:57 PM (GMT 0)
So sorry to hear, Cheryl!!

It sounds like CIDP would be very important to diagnose as early as possible, so probably important to jump through those hoops imo. I guess they're looking for particular antibodies with the lumbar puncture? ..do you know if the results will be conclusive after all of the tests?

I won't speculate on whether Lyme or the Levaquin damage is a part of the picture.. neuropathy is very scary though, and as I think you know, it can be difficult to predict what will aggravate it and what will help. Hope you can find some relief soon.

Have you jumped through the hoops here yet?

https://www.hrsa.gov/cicp/
Posted 2/26/2021 9:16 PM (GMT 0)
thank you for that link, but I just can't deal with that at the moment. I seriously doubt i would get any compensation anyway , since the vaccine isn't FDA approved. I assume it would be a ton of work and added stress with no positive outcome. I may change my mind in the future.

Idk if the spinal will be conclusive. The dr said she'd prob be able to tell if CIDP from the spinal alone (since I failed to complete the EMG). I am afraid of the spinal , but I have been told by someone who did it that it's very quick and not very painful. (Actually, I am more concerned about the CT radiation. The only reason for the CT is to r/o any brain issues that could make the spinal kill me . However, she also told me that I could switch it to an MRI (neither would be w contrast....which I'd refuse anyway). So...CT takes 5 minutes and I won't be claustrophobic, but radiated vs. MRI where I will def be over the top anxious, panicked, etc for around 30 minutes, but zero radiation.What would you do?

Also, I don't know a ton about what you can test from CSF, but Im wondering if I should ask her for any other tests as long as theyre testing it anyway. This is what she wrote: "wbc, protein, glucose, lyme markers (including Western blot)". Should I ask her to add bartonella? mycoplasma? I have no idea what shows up potentially in csf. I doubt they'll find lyme there after 9 years......
Posted 2/26/2021 9:22 PM (GMT 0)
Oh and to Sara, mine is defintiely a cytokine storm causing neurological inflammation. Your symptoms sound VERY similar to mine. My POTS has flared as well , although generally as time goes on it seems the cardiac related issues are becoming less and the neuro and muscular issues are getting worse (plus the arthritic issues that I was already dealing with). I am going to research more about DNRS and MCAS (which I was never dx with,but lately suspect
Posted 2/26/2021 9:34 PM (GMT 0)
i forgot to say....I don't currently have an LLMD. They are all horrible in NYC...lol. I have fired them all and can't afford any of them anyway
Posted 2/26/2021 10:49 PM (GMT 0)
Hi Cheryl,

I really feel for you! If I were in your shoes I would start taking supplements to rid your body of the toxins from the vaccine.

Personally I would take Jernigan's Neuro-Antitox CNS/PNS because it rids your body of these toxins and Virogen to get rid of viruses. I would also take Borrelogen just to be sure I was targeting all the poisons from the vaccine as well as detox baths.

Disclaimer: I have no financial interest nor am I affiliated with any supplements I talk about.

You can read about each remedy below:

https://www.jnutra.com/collections/herbal-remedies/products/neuro-antitox-ii-cns-pns
https://www.jnutra.com/collections/herbal-remedies/products/virogen
https://www.jnutra.com/collections/herbal-remedies/products/borrelogen

That's would I would do as well as taking a supplement to rid yourself of heavy metals.

Hope you feel better,
Denise
Posted 2/26/2021 10:50 PM (GMT 0)
Covid vaccines are included, but yeah I get what you're saying. Looks like you have a year from when you received the vaccine if you choose to pursue it.

MRI vs CT: I personally would choose MRI, but only because I'm not bothered by it. A doc one time equated the amount of radiation from CT to about 6 x-rays at once. I think radiation is more problematic when you're getting frequently exposed though.. maybe consider that in your decision as the stress around MRI is also something you don't need.

Other members are much more knowledgeable than I am on the testing. I know that the lumbar puncture provides a unique opportunity, however, a positive wb would also deny the possibility of compensation (not that you're counting on that anyway). Interested in other's opinions...
Posted 2/26/2021 10:57 PM (GMT 0)

cherylfelice said...
thank you for that link, but I just can't deal with that at the moment. I seriously doubt i would get any compensation anyway , since the vaccine isn't FDA approved. I assume it would be a ton of work and added stress with no positive outcome. I may change my mind in the future.

Idk if the spinal will be conclusive. The dr said she'd prob be able to tell if CIDP from the spinal alone (since I failed to complete the EMG). I am afraid of the spinal , but I have been told by someone who did it that it's very quick and not very painful. (Actually, I am more concerned about the CT radiation. The only reason for the CT is to r/o any brain issues that could make the spinal kill me . However, she also told me that I could switch it to an MRI (neither would be w contrast....which I'd refuse anyway). So...CT takes 5 minutes and I won't be claustrophobic, but radiated vs. MRI where I will def be over the top anxious, panicked, etc for around 30 minutes, but zero radiation.What would you do?

Also, I don't know a ton about what you can test from CSF, but Im wondering if I should ask her for any other tests as long as theyre testing it anyway. This is what she wrote: "wbc, protein, glucose, lyme markers (including Western blot)". Should I ask her to add bartonella? mycoplasma? I have no idea what shows up potentially in csf. I doubt they'll find lyme there after 9 years......

I’ve had several mri’s and they’re really not too bad - just boring.
I am a big chicken and hate/scared of 90% of any/all procedures.
You can tell them that you’re claustrophobic. There’s a button you can press if you panic and want to
cut it short.
Posted 2/26/2021 11:01 PM (GMT 0)
I do not have claustrophobia in general, but I have not found MRIs especially uncomfortable. There's a little mirror above your face angled toward the outer room and techs, so you can see things outside of the machine readily. They always give me headphones with any music I want playing, which helps a lot to keep my mind in a good place. Afterward I feel a little woozy for a few hours, but nothing too significant. Never had one with contrast, and never had a CT, though. I agree with Potsnpans that you should do what feels the least stressful for you right now. Added stress is the last thing a struggling body needs!
Posted 2/26/2021 11:47 PM (GMT 0)
MRI's are not too bad unless you have some extreme claustrophobia or your a large individual. They are noisy but once you close your eyes you forget how close everything is. I would opt for the MRI if the results are just as accurate. Ive had 4 CT scans in the last 12 months and my oncologist has just started to express concerns over how many Ive had in a short period. 3 were literally life or death situation and unavoidable.
Posted 2/27/2021 1:45 AM (GMT 0)
I would pick MRI. It’s not that bad. Also, all the machines ate not identical. There are open and closed MRI’s. If it’s just your head, they should be able to use a machine that just goes over your head instead of your whole body in a capsule. Talk to the doctor and seeing what options you have. You’ll be okay.
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