Jim-LA
Your Replies
-
July 19, 2021 at 7:40 pm
Medicare Part B will now cover SCIg for home treatments. Home IVIg infusion is still not covered by Medicare Part B:
July 13, 2021 at 3:20 pmIt appears that the closest center of excellence to Pocatello is in Salt Lake City, about 165 miles South of you:
https://www.gbs-cidp.org/gbs_cfe/university-of-utah
Local Neurologists specializing in peripheral neuropathy are here:
https://www.medicinenet.com/peripheral_neuropathy/pocatello-id_city.htm
You could contact the GBS-CIDP liaison near Boise for a referral here:
James Mertz
Caldwell, ID 93607
298 459 7141
I hope you can find a good doctor.
July 12, 2021 at 9:38 pmThe shot for Shingles was first discussed in 2014 and, although rare, it is no surprise about the shot causing GBS/CIDP for some. That forum discussion thread is here:
July 12, 2021 at 4:33 pmThis post should have been posted under the existing Covid-19 Vaccine discussion thread here:
There is also a discussion about the J&J Vaccine and the accuracy of VAERS data there too. VAERS data is unreliable.
July 12, 2021 at 2:09 amI have no firsthand experience with either of these shots. But it appears the Typhoid shot may pose a risk of triggering a recurrence of GBS. Here is an article that may be of interest: https://jnnp.bmj.com/content/73/3/348
July 8, 2021 at 8:50 pmPfizer and BioNTech announced Today they are developing a Covid-19 booster shot intended to target the delta variant as concerns rise about the highly transmissible strain that is already the dominant form of the disease in the United States. They will be recommending the booster shot about 9 months after the initial 2 shots, then annually.
The booster is being tested in their clinical trial and I hope we hear about results soon.
June 29, 2021 at 8:05 pmRecent research has suggested mRNA vaccines will last longer than traditional vaccines (like the J&J vaccine that has actual Covid-19 in it). The Pfizer and Moderna vaccines have also shown protection against variants such as the delta variant.
According to Dr Ali Ellebedy, an immunologist at Washington University in St. Louis: “The fact that the reactions continued for almost four months after vaccination — that’s a very, very good sign,” Dr. Ellebedy said. Germinal centers typically peak one to two weeks after traditional immunization, and then wane. This has not been the case with mRNA vaccines.
“Usually by four to six weeks, there’s not much left,” said DR Deepta Bhattacharya, an immunologist at the University of Arizona. But germinal centers stimulated by the mRNA vaccines are “still going, months into it, and not a lot of decline in most people.”
Here is a comparison of the mRNA vaccines to traditional vaccines:
June 29, 2021 at 1:25 pmThe new (June 2021) forum format is harder to read, especially for us older folks. Reason is that the new gray font is not dark enough and lacks a good contrast to read without difficulty. This may account for keeping some folks from using the forum as frequently as before the change. If the font used for comments was black (and a little larger) it would have a better contrast and make it easier to read for many forum participants.
June 17, 2021 at 6:47 pmThe site has not been working properly since this morning. The sort is by category (not by latest post) and the recent replies appears not to be working again.
Are you guys updating some stuff? or have the mysterious internet outages (airlines, etc) affected the site?
Hope you can get it working again soon.
May 26, 2021 at 2:57 pmMalwarebytes Premium holds an 8% market share. GBS/CIDP has an estimated incidence of 0.7 to 1.6 cases per 100,000 persons per year. I don’t know what percentage of Malwarebytes owners find configuring the product a ‘foreign language’ or can’t get setup help from friends.
Adding these statistics together suggests a very small number of people may be impeded by Malwarebytes from accessing this site.
You are correct that Malwarebytes could program their product differently so that this site does not show as possibly harmful. But it would probably take many voices to get them to do this.
May 25, 2021 at 2:05 pmI had issues with Malwarebytes and replaced it years ago. I now use an enterprise-grade endpoint product for Win10 that includes anti-ransomware in addition to a two-way firewall and all the anti-virus and other protections.
Both Malwarebytes and Webroot have whitelists/allow lists where you can exempt sites from being identified as potential risks and unblock them. This site and its forums present no risk.
May 14, 2021 at 3:28 pmThis sounds similar to my bout with low RBC and anemia. Maybe the following forum post contains some helpful insight into what could be going on:
April 23, 2021 at 9:22 pmVirtual Los Angeles, CA Chapter Meeting
Details:
Saturday, May 22nd, 2021
11:30 AM (PST)Topic:
Grief & LossSpeaker:
Debora Ribas-SantosDebora is a seasoned clinician journeying with those on one of the life’s most challenging journeys: chronic illnesses. Her focus on providing compassionate care to those facing terminal illness has spanned almost a decade and serving those during a most vulnerable period is truly an honor and inspiration for Debora. Debora currently serves as a medical social worker at Kaiser Permanente Baldwin Medical Center in the hematology/oncology clinic. She has six years of clinical experience as a medical social worker and five years’ experience of inpatient care.
Questions?
Cindy Chen
828cindy828@gmail.com
626-383-6333To Register: https://forms.gbs-cidp.org/event/los-angeles-virtual-chapter-meeting-may-2021/e335452
April 8, 2021 at 6:23 pmMy first choices would be Rituximab (Rituxan) or CellCept (mycophenolate). Myfortic (mycophenolic acid) is a good alternative too, but you’ll need regular blood tests. CellCept (mycophenolate) is a first-choice medication for preventing organ rejection since it doesn’t hurt the kidneys or liver like its alternatives. But it can have side effects for some.
In some cases, immunosuppressive drugs such as Imuran (azathioprine), Prograf (tacrolimus), cyclophosphamide, Afinitor (everolimus), cyclosporin, Rapamune (sirolimus), and type 1 interferon (INF-1?) and IFN-beta – can be used to limit corticosteroid and immunoglobulin use and may be indicated because of disease progression or poor response despite aggressive treatment with established therapies such as IVIg.
In all cases do your research on each drug and discuss them with your doctors. Maybe get a sample of the meds before getting a large amount to make sure you tolerate it OK. Also make sure they are covered properly by your insurance because some can be costly.
Many of the alternative drugs are discussed here:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3487533April 8, 2021 at 4:21 pmIVIg never worked for me. I kept getting worse while on it. Then I transferred to a center of excellence where the neurologists had extensive experience with GBS/CIDP. They put me on a combination of Plasma Exchange and Prednisone. Within 2 days I felt improvement.
Unfortunately, Prednisone can have many side effects and I seemed susceptible to most of its side effects. If I had to do this again I would get an alternative to Prednisone, I have since learned there are many.
