Jim-LA

Your Replies

  • Jim-LA
    March 30, 2021 at 3:16 pm

    Yes, the sort by most recent topic/comment is working again.

    Thank you for restoring that functionality. The side bar seems to be fixed too.

    Jim-LA
    March 22, 2021 at 5:06 pm

    This forum thread contains duplicated and incomplete vaccine info. Please post further comments and info about the Covid shots in the main topic thread so that everyone is on the same page and sharing knowledge. This is the GBS/CIDP forum topic that should be used:

    Covid 19 Vaccine

    Thank you!

    Jim-LA
    March 22, 2021 at 5:01 pm

    California guidelines are here:
    https://www.cdph.ca.gov/Programs/CID/DCDC/Pages/COVID-19/Provider-Bulletin-2-12-21.aspx

    Individual cities may vary their guidelines.

    Jim-LA
    March 20, 2021 at 3:45 pm

    I have never used Hizentra, Ig doesn’t work for me. Plasma Exchange and corticosteroids is what helped me.

    Here is a comparison of the various Ig products:
    https://primaryimmune.org/wp-content/uploads/2017/02/IVIG-Chart-2.2017.pdf

    Jim-LA
    March 19, 2021 at 10:38 pm

    One of the reported side effects of Hizentra is loose skin after long term use. Perhaps that’s nicknamed Hizentra Belly? It is considered a very infrequent side effect and does not pose a health risk.

    Firming creams that contain retinoids and hyaluronic acid may help tighten the loose skin.

    Jim-LA
    March 19, 2021 at 10:12 pm

    Do not receive a “live” vaccine (like J&J) while using immune globulin (IVIg/SCIg). The vaccine may not work as well and may not fully protect you from Covid. The newer mRNA vaccines are less likely to be negated by the Ig treatments.

    Jim-LA
    March 18, 2021 at 10:22 pm

    I believe the group Tamme is referring to is here:
    https://www.facebook.com/groups/1592338124143555/?ref=bookmarks

    Jim-LA
    March 18, 2021 at 9:17 pm

    Each State and County/City has their own rules for the shots. Where is your appointment?

    Jim-LA
    March 18, 2021 at 6:06 pm

    Dear Buckthorn, I don’t think all medical professionals know for sure what may have caused an attack of GBS/CIDP. Some have had no experience with the disease and have only read about it sometime in their past. Others jump to conclusions without knowing how to properly diagnose the disease or its probable triggers/causes. Plus, there is no VAERS validation process to keep anyone from masquerading as a medical professional and posting misinformation.

    If there was a way that VAERS could screen out the inexperienced reports and only show the proven medical experts who actually have hands on experience with GBS/CIDP, then the info could be useful. Until then, I won’t be trusting info reported in the VAERS database.

    Jim-LA
    March 17, 2021 at 6:06 pm

    VAERS is a passive reporting system, meaning it relies on individuals to send in reports of their experiences. Anyone can submit a report to VAERS, not just medical professionals. Consequently, VAERS can receive unverified information about adverse vaccine reactions.

    If I had access to view the reports that are in the VAERS database, I wouldn’t know which are valid or duplicates, or which were caused by something other than the vaccine being blamed. The data is unverified, unresearched, often anecdotal – and made immediately available to the public. Anti-vaccination groups can skew the results with false reports.

    I don’t put much faith in the accuracy of VAERS data.

    Jim-LA
    March 9, 2021 at 9:39 pm

    Alin19buna, Thank you for posting in the proper forum thread and sharing your knowledge with us!

    Jim-LA
    March 8, 2021 at 7:45 pm

    These forums deal with very rare diseases that even experienced medical professionals with years of practice have a hard time answering specifically. A social worker, licensed or not, would be unlikely to have reliable medical advice or provide worthwhile support.

    Jim-LA
    March 7, 2021 at 4:26 pm

    Please move this discussion into the main topic thread here:

    Covid 19 Vaccine

    Jim-LA
    March 1, 2021 at 6:42 pm

    All vaccine brands side effects update as of 3/1/21:
    https://www.yahoo.com/lifestyle/heres-everything-know-side-effects-031521941.html

    Jim-LA
    February 20, 2021 at 9:21 pm

    Paul, NYC Phase IB – Underlying Conditions – starting 2/15/21 – People who have the following conditions qualify for the vaccine:

    ­- Cancer (current or in remission, including 9/11-related cancers)
    – Chronic kidney disease
    – Pulmonary disease, including but not limited to COPD (chronic obstructive pulmonary disease), asthma (moderate-to-severe), pulmonary fibrosis, cystic fibrosis and 9/11-related pulmonary diseases
    – Intellectual and developmental disabilities including Down syndrome
    – Heart conditions, including but not limited to heart failure, coronary artery disease, cardiomyopathies or hypertension (high blood pressure)
    – Immunocompromised state (weakened immune system), including but not limited to solid organ transplant or from blood or bone marrow transplant, immune deficiencies, HIV, use of corticosteroids, use of other immune weakening medicines or other causes
    – Severe obesity (body mass index of 40 kg/m2 or higher), obesity (body mass index of between 30 kg/m2 and 40 kg/m2)
    – Pregnancy
    – Sickle cell disease or thalassemia
    – Type 1 or 2 diabetes mellitus
    – Cerebrovascular disease (affects blood vessels and blood supply to the brain)
    – Neurologic conditions including but not limited to Alzheimer’s disease or dementia
    – Liver disease

    I believe people with CIDP or its variants would be covered under the Neurologic and Immunocompromised rules. But I live on the West Coast and have no first hand knowledge of how NYC is proceeding.

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