Jim-LA

Your Replies

  • Jim-LA
    September 17, 2021 at 11:32 pm

    There are reports that the vaccine may not work as well while using immune globulin (IVIg/SCIg) and may not fully protect you from Covid with Ig still present (IVIg has a half-life of close to 30 days). The newer mRNA vaccines are less likely to be negated by the Ig treatments, but I would wait a week or two after the 2nd shot before restarting IVIg.

    Jim-LA
    September 9, 2021 at 8:08 pm

    CIDP does damage the axons. The pathological hallmark of chronic inflammatory demyelinating polyneuropathy (CIDP) is segmental demyelination and mononuclear inflammatory cell infiltration in the peripheral nerves, accompanied by varying degrees of axonal degeneration, myelinated fibre loss, and endoneurial oedema.

    My axonal damage has landed me in a wheelchair. Once a semi-professional tennis player, now a paraplegic.

    Jim-LA
    September 9, 2021 at 12:48 am

    BTW were you diagnosed with MMN? If so, please read about it:

    MMN anyone update on here with it?

    Jim-LA
    September 9, 2021 at 12:06 am

    As far as for telling the difference between a CIDP related weakness and muscle atrophy, CIDP weakness (Myelin damage) is usually accompanied by tingliness, numbness, and unusual sensations like zingers, crawliness, sometimes itching. Muscle weakness without these associated symptoms is less likely to be CIDP, but not everyone has the same experiences with this disease.

    There are many discussions about supplements in these forums. Here are a few that might be helpful:

    Alpha lipoic Acid

    Vitamins and supplements for CIDP

    Nerve Regeneration Protocol

    Deficiencies of vitamins B12 (Methylcobalamin 5000MCG) and D3 (125MCG, 5000IU) have also been known to be involved with CIDP-related muscle atrophy and some members have cited taking such supplements as helping improve their condition. More info here:
    https://forum.gbs-cidp.org/topic/b-12-deficiency-amp-cidp
    https://forum.gbs-cidp.org/topic/vitamin-d

    Jim-LA
    September 8, 2021 at 5:00 pm

    Here is a handy dosage calculator for IVIg and SCIg:

    https://pbco.ca/IVIG_Dosing_Calculator.htm

    Jim-LA
    August 27, 2021 at 11:10 pm

    Paul, the newer mRNA vaccines (Pfizer and Moderna) pose the lowest risk of GBS/CIDP. I had my Pfizer booster (3rd shot) 2 weeks ago and have had no side effects. Folks that have taken the J&J and AstraZeneca vaccines face the higher risk since these shots use the older style live virus method.

    Jim-LA
    August 22, 2021 at 3:24 pm

    Although symptoms vary widely between people, fever is usually not a typical symptom of GBS. Tingling and weakness are the usual symptoms.

    Perhaps there is or was a viral infection?

    • Cytomegalovirus which causes chest infection or glandular fever
    • Epstein-Barr virus which causes glandular fever
    • Zika virus which causes fever, rash and joint pain
    Jim-LA
    August 17, 2021 at 11:52 pm

    I received my booster shot at the Walmart pharmacy near me in California. It was free. They initially told me I had to come back in a  few months. When I pressed them about the new CDC guidelines they made some phone calls and told me I can get the shot now. Expect some confusion because this (booster) is all new to most pharmacies.

    Jim-LA
    August 17, 2021 at 11:45 pm

    Which vaccine triggered the Covid? J&J and AstraZeneca are the most risky. The two mRNA vaccines are much less likely to trigger GBS symptoms.

    Jim-LA
    August 17, 2021 at 10:26 pm

    Please read here:

    Covid 19 Vaccine

    Jim-LA
    August 17, 2021 at 9:23 pm

    It depends on what part of the state you are in. The two Centers of Excellence near CT:

    St. Elizabeth’s Medical Center

    Columbia University Medical Center

    You can also contact the GBS-CIDP liaison in Hartford for a referral:

    Alberta Amaro

    860 623 5893

    aaaharpo@snet.net

     

     

    Jim-LA
    August 17, 2021 at 9:07 pm

    Today I received my Pfizer booster shot. This is my third Pfizer shot. The pharmacist called it in to confirm “immunocompromised” and found that having had GBS/CIDP qualifies me for the booster. I’ll post back if I have any negative reaction from this shot.

    Jim-LA
    August 9, 2021 at 2:59 pm

    Some interesting stories from young people are posted toward the end of the following brochure:

    https://30g7el1b4b1n28kgpr414nuu-wpengine.netdna-ssl.com/wp-content/uploads/2012/01/TeenYoungAdult.pdf

    Jim-LA
    August 8, 2021 at 3:02 pm

    There are many, many qualified home infusion services that have strict Covid rules for their employees so as to not jeopardize their client’s health. I would find a new service. You should be able to locate reputable infusion services in your area here:

    https://www.nhia.org/providers_connect

    Another list is here:

    https://www.gbs-cidp.org/support/resources

    Jim-LA
    August 4, 2021 at 3:44 pm

    Paul, if you were to do a keyword search for Phoenix in the forums you would get many hits. One of those forum threads is here:

    https://forum.gbs-cidp.org/forums/topic/any-specialists-in-prescott-phoenix-for-cidp-with-government-insurance

    The GBS/CIDP Foundation has support groups in the Phoenix area. Please contact:
    Allen Throckmorton

    623 340 0079

    Bruce.throkmorton@gbs-cidp.org

    Or call the foundation directly 866 224 3301

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