Jim-LA

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  • Jim-LA
    February 20, 2021 at 4:21 pm

    I received my 2nd Pfizer Coronavirus vaccine shot on 2/19/21. Besides a slightly sore arm at the injection site (normal for me with any shot) I woke up very tired this morning and slept in LOL! Those are the only side effects for me thus far. I’ll post more if I have any kind of reaction.

    As Ila has suggested, if others have had the shots maybe you can post your experiences with it in this forum thread. That would help many folks know more about vaccine reactions for those of us with GBS, CIDP, and it’s variants.

    Thanks

    Jim-LA
    February 19, 2021 at 9:16 pm

    New info about the vaccines:
    https://www.msn.com/en-us/health/medical/some-vaccines-effective-after-one-dose-can-be-stored-in-normal-freezers/ar-BB1dP5Q6?ocid=BingNews

    Jim-LA
    February 19, 2021 at 6:40 pm

    Ask the Experts Videocast Series Continues..
    
    GBS/CIDP Foundation Ask the Expert Videocast Series Continues on February 25th, 2021 when Dr. Peter Donofrio, Chairman of the GBS|CIDP Foundation Global Medical Advisory Board, and Executive Director, Lisa Butler, discuss “Vaccine FAQs from the GBS|CIDP Community.”

    Panelists will answer questions previously provided from members like “Can you explain the differences in the vaccines that are currently available?” and “I had GBS, can I still get the vaccine?” “If I have CIDP, when in my infusion cycle is the best time to get a vaccine?” – plus more. A link to the episode can be found on February 25th at 1PM (EST), here at Ask the Expert Videocast episodes:
    https://www.gbs-cidp.org/ask-the-expert-videocast

    Jim-LA
    February 19, 2021 at 2:14 pm

    Your post, along with a couple others, were clones of an existing topic and moved/consolidated under the main topic thread here: https://forum.gbs-cidp.org/forums/topic/covid-19-vaccine

    Sorry for the confusion. There is a log explaining the merger of the duplicate topics.

    Jim-LA
    January 29, 2021 at 6:25 pm

    I got my 1st Pfizer Covid-19 shot a couple hours ago at a mega site about 35 miles from my house. The line was about a 2 hour wait. After the shot they make you wait in your car 15 minutes to see if you have a reaction. So far, I have not had any type of reaction, not even a sore arm.

    My 2nd shot is mid-February. I’ll post again tomorrow with any updates.

    Jim-LA
    January 6, 2021 at 8:36 pm

    mRNA vaccines are a new type of vaccine to protect against infectious diseases. To trigger an immune response, many vaccines put a weakened or inactivated germ into our bodies. This is how most Flu shots work which have triggered GBS/CIDP in a small group of people. But not mRNA vaccines. Instead, they teach our cells how to make a protein—or even just a piece of a protein—that triggers a somewhat different immune response. That immune response, which produces antibodies, is what protects us from getting infected if the real virus (Covid-19) enters our bodies.

    Not everyone will have an identical immune response, and the vaccine could trigger a reoccurrence of GBS/CIDP in rare instances, requiring treatment. But Covid-19 will kill many of us and I would rather deal with IVIg and Plasma Exchange than find myself on the verge of death!

    Here is the latest mRNA vaccine analysis from the CDC:
    https://www.cnbc.com/2021/01/06/cdc-says-severe-allergic-reactions-to-covid-vaccine-run-10-times-the-flu-shot-but-still-rare.html

    Jim-LA
    January 4, 2021 at 4:46 pm

    The following studies seem inexact regarding the effect of statins on CIDP. The studies suggest a low risk to CIDP patients from taking statins and none mention any reduction in myelin regeneration. But those of us with CIDP vary in symptoms and often react differently to medicines, treatments, and/or dosages.

    https://pubmed.ncbi.nlm.nih.gov/29765578

    https://www.scientificamerican.com/article/do-statins-produce-neurological-effects

    In the analysis of 135 previous studies, which included nearly 250,000 people combined, researchers found that the drugs simvastatin (Zocor) and pravastatin (Pravachol) had the fewest side effects of statin medications. They also found that lower doses produced fewer side effects in general.

    I take 10MG of Lipitor (a statin) daily without any side effects. I also take Vitamin B12 (Methylcobalamin 5000MCG) daily to help promote myelin regrowth.

    Our brains have a natural ability to regenerate myelin. This repair involves special myelin-making cells in the brain called oligodendrocytes. These cells are made from a type of stem cell found in our brains, called oligodendrocyte progenitor cells (OPCs). But as we age, this regeneration happens less.

    Jim-LA
    December 10, 2020 at 8:56 pm

    In my case MFS followed GBS by 4-6 weeks, followed by CIDP. Plasma Exchange stopped my MFS and was the key to curing it for me.

    Jim-LA
    December 10, 2020 at 4:18 pm

    You should look into Miller Fisher Syndrome as it could be what has caused your facial paralysis. Here is an article that will better explain MFS:
    https://www.statpearls.com/ArticleLibrary/viewarticle/25164

    Jim-LA
    December 4, 2020 at 4:58 pm

    You can buy them on eBay here:
    https://www.ebay.com/b/Niagara-Massagers/36449/bn_73048946

    Jim-LA
    December 2, 2020 at 7:19 pm

    An update on the Covid vaccine and its side-affects follows. The article said “The longer, more important kind of adverse events such as some autoimmune disease have not been reported between the placebo group and the vaccine group in these two trials, which is very reassuring”. So it appears the bio-engineered vaccines from Pfizer and Moderma won’t trigger GBS or CIDP. But of course there are always exceptions and I wouldn’t consider the vaccines 100% GBS/CIDP proof.
    https://www.cnbc.com/2020/12/01/trump-covid-vaccine-czar-says-side-effects-significantly-noticeable-in-10percent-to-15percent-of-recipients.html

    Jim-LA
    December 2, 2020 at 5:02 pm

    John, I too was treated with Rituximab and it helped put my condition into recession, possibly cured it from reoccurring. There are many discussions about it here in these forums, here is one of several I was involved in:

    Rituximab

    Jim-LA
    December 2, 2020 at 3:22 pm

    Following my PE treatments at Cedars-LA, I was admitted into their intensive rehabilitation program for neurological disorders. I have undergone this program twice now and left each time with a little more ability than when I started. The neurologists on staff who helped me, recommended a specific type of power wheelchair to help me get back into some of the ADL’s I had lost. This made a huge improvement in my outlook about living with CIDP.

    The Cedars-LA program has since partnered with UCLA Medical Center and created the California Rehabilitation Institute here:
    https://www.cedars-sinai.org/programs/physical-medicine-rehabilitation/california-institute.html

    Jim-LA
    December 2, 2020 at 2:15 pm

    JD, it is possible you have a rare variant of CIDP called Miller Fisher Syndrome (MFS). I had experienced many of the symptoms you described and was getting worse while on IVIg. I was afflicted with a combination of GBS/CIDP/MFS in 2008 and am now wheelchair-bound as a result.

    While in the ICU at Cedars-LA for Pneumonia in 2009, I was advised by my neurologist to try Plasma Exchange (PE) for my CIDP/MFS condition. I did this when I was released from the ICU some days later. Within two days of my first PE treatment my facial/head-related symptoms began to abate. But PE, like IVIg, doesn’t work for everyone.

    Although many of us with CIDP or a variant experience much the same symptoms, most have additional complaints too. This is one of the factors that can make diagnosis from a doctor difficult, especially from a doctor who has not been involved with a large variety of CIDP-related patients. This was my problem when I first got GBS, none of the doctors or neurologists who treated me had more than textbook experience with the disease.

    The most knowledgeable doctor, researcher (discoverer of the Lewis-Sumner CIDP variant), and professor of Neurology is at Cedars-LA:
    https://bio.cedars-sinai.org/lewisra/index.html

    More info about MFS can be found in these forums and here:
    https://www.gbs-cidp.org/variants/miller-fisher-syndrome

    Jim-LA
    November 27, 2020 at 4:28 pm

    The traditional understanding of the immune system was that innate immune cells couldn’t learn; that they dealt with each invader the same way every time. But new evidence suggests innate responses are changed by previous infections or vaccination, through “innate learning” or “trained immunity”.

    Because innate learning changes innate immune cells, it has broad effects on how the immune system deals with infections. That means infection by one invader can cause changes in how the immune system deals with a completely different invader. In contrast, adaptive learning leads to very specific protection against repeat infection by the same invader.

    Recent evidence also suggests immune learning is strongly affected by environmental factors, including diet, lifestyle, our surroundings and previous infections.

    So, it is possible our Autoimmune systems can improve over time. But there will be a memory of GBS and how it produced bad antibodies to combat GBS, and it could produce them again.

    A good article covering Immunological memory is at the following link:
    https://www.ncbi.nlm.nih.gov/books/NBK27158

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