Covid and MS (Multiple Sclerosis) Resources

 When it comes to MS and covid the main concern is that a lot of people with MS are on immunosuppressants to keep their MS in check while at the same time this opens them up to catching covid. There are other medical conditions that are also treated with these same types of drugs and these people do not have the same immune system response to covid that a normal person would have. Infections can kill and people that are fighting mask mandates and vaccinations are taking an active voice in that the lives of others do not matter to them. They only care about themselves. These people have a right to life as well and everything needs to be done to protect life. I’m hoping that by putting this information into one place people can use it for their own medical treatments/research and so that others can know how these groups are impacted. I will continue to add to this list as I come by more information. 

Here is some information on MS (Multiple Sclerosis) and Covid. 

Articles:

Below are articles I found that should have gone through the peer review process before being published. I would give these more backing then the general websites that you can find on the same topics. These articles you should be able to easily access through the links without having to have access to a college library.

•”COVID-19 and MS disease-modifying therapies”. Neurology (Neuroimmunology & Neuroinflammation) By Joseph R. Berger, Rachel Brandstadter, and Amit Bar-Or. (May 15^th 2020).  https://nn.neurology.org/content/7/4/e761.abstract (https://nn.neurology.org/content/nnn/7/4/e761.full.pdf)

-One of the key results of this shows that people with MS do not have a higher chance of catching covid, but they do have a higher death rate due to the body’s over reaction to the infection. 

•”COVID-19 in teriflunomide-treated patients with multiple sclerosis.” By Amir Hadi Maghzi, Maria K. Houtchens, Paolo Preziosa…..(June 3^rd 2020) Maghzi2020_Article_COVID-19InTeriflunomide-treate.pdf

-This one has some good pictures to help explain what they are talking about.

 

• “Multiple sclerosis and COVIS-19.” By Jan Mares and Hans-Peter Hartung. (July 17^th 2020) Bio_002599_fin-0001 (1).pdf

•”Multiple sclerosis and COVID-19: How many are at risk?” . European Journal of Neurology: The Official Journal of the European Academy of Neurology. By Gabriel Bsteh, Christina Bitschnau, Harald Hegen, Franziska Di Pauli,…..(September 25^th 2020). https://onlinelibrary.wiley.com/doi/full/10.1111/ene.14555 (https://onlinelibrary.wiley.com/doi/epdf/10.1111/ene.14555)

-This one looks at overlapping health factors and age in relation to the MS covid issue.

 

Websites: 

https://www.nationalmssociety.org/coronavirus-covid-19-information/multiple-sclerosis-and-coronavirus 

https://www.cedars-sinai.org/blog/ms-and-covid-19.html

-So this website goes against the peer reviewed information I found. In those studies they found higher death rates and this site tries to make it sound that people with MS fit into the same numbers as other groups. I included this for the reason of showing how websites can give bad information and what you read on this site should not be trusted. 

https://journals.lww.com/neurotodayonline/fulltext/2021/05060/how_do_patients_with_multiple_sclerosis_fare_with.5.aspx

-This one I’m on the fence with since it says that people with ambulatory disability had higher risks, but other people with MS were on average with everyone else. This is still just a website and should not be trusted as much as more official research.

https://www.ajmc.com/view/patients-with-ms-testing-positive-for-covid-19-saw-worse-depressive-anxiety-symptoms

-This one I found interesting because it also looks at the impact of mental health around the subject of covid and MS.

https://www.webmd.com/multiple-sclerosis/covid-19-multiple-sclerosis-ms 

https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0255316

-This one I put under websites instead of Journals because it came from a newer source that has not yet established its credibility. This one says that instead of worrying about how immunosuppressants will impact your chances of covid, that you should still keep up with your MS treatments. It is on the newer side of things, but I’m hesitant in trusting it due to where it was published. 

https://www.mssociety.org.uk/about-ms/treatments-and-therapies/disease-modifying-therapies/covid-19-coronavirus-and-ms

-I like getting an international perspective on situations since I feel that US politics many times warps all the parts of our lives. You can see this even today with how politicized the mask issue has gotten. This site from the UK acknowledges that your chances of infection from covid and complications are higher. 

 

One of the interesting things I found though is that most of the studies and sites focused on people with MS that are on some type of immunosuppressants and that there was little to no info on people with MS that are not taking any form of them. I would have also liked to have found info on people with CIS in relation to COVID since their body has already shown an ability to over react.

12/9/21: Update: "FDA clears AstraZeneca's Covid antibody treatment for immunocompromised" - https://www.nbcnews.com/health/health-news/fda-clears-astrazenecas-covid-antibody-treatment-immunocompromised-rcna8130?fbclid=IwAR2tLG0bPdPRcMr8T4pa1PeRP01X1RpZr6HgADLUElCngAXXHPk2_SqWF4M

1/28/22: "Woman With MS Dies of COVID After Doctors Told Her She Couldn't Get Vaxxed, Family Says" - https://www.thedailybeast.com/nerissa-regnier-woman-with-ms-dies-of-covid-19-after-doctors-told-her-she-couldnt-get-vaxxed-family-says?fbclid=IwAR2S44WwYCHoTJZXngFUjVVsMVT-v1hSmQsDUaxjD6t6gjkNaBaf510mVNk

 

Covid Day 6

So I got the above generic message from Kaiser. I don't know how many times I have made complaints to them over the years and feel like they will never change the bad ways. It's on all levels, admin assistants to doctors, clinics to hospitals. I did respond to their message by cutting and pasting both my Google review and a link to this blog.

How am I doing today?

I know that I'm not getting much sleep at night due to having to sleep upright just to be able to breath. My body is feeling that. The throat is also worse and trying to talk a whole sentence is a struggle. Breathing issues are still focused in the head. Sometimes are worse then others. I feel like I'm trying to deforest a small forest with all the tissues I'm going through. Last night for my class I forgot to mute myself and blew my nose. I quickly said sorry and muted myself when I had discovered what I had done. At least my professor already knew I had covid. Energy levels are still low. I weighed myself this morning and just since Sunday I've lost 3.6 pounds. I'm finding that I'm not really hungry even though I know I need to eat to keep up my strength. 

9pm: So Kaiser's care package was left at my door. The door bell never rang and I was lucky it wasn't stolen. It was actually filled with good stuff except the anti-bacterial soap had all ruptured. Not sure if they had frozen or exploded due to pressure change if they had been shipped on a plane. At least it's nice of Kaiser to try and help you protect your family while you possibly die from lack of treatment. Yes, I'm very cynical and sarcastic when it comes to Kaiser's lack of options for people.

11/10/21 - So why am I starting this blog on top of my other ones and everything else I do. Simple: it is due to the horrible medical experience I have had with Kaiser in my own Covid diagnosis. 

I think I was exposed on Friday night when I was with my mother in the ER. Then the symptoms kicked in on late Saturday. On Monday I went to Kaiser to get tested and then on Tuesday got my results by email… this is where the problem started. No real contact on what I should do. On Tuesday I tried to call the medical advice line to find out what I should do next. That took over 2 hours to just be able to talk to a human that said she would get a message to my primary care provider…so much for a medical advice line. Then there was another Kaiser number where you could speak to an education specialist and get a free covid supply kit. I did this, but all the information the lady provided was just the same general information that the media has been feeding people for months about cleaning surfaces, washing hands, staying 6 feet apart, and wearing a mask. So no real help there. 

Then today I also emailed my doctor to see if I could talk to her. So on top of this I do have other health issues that when mixed with covid can be really bad, so I was hoping that there would at least be some concern from my medical team (as Kaiser likes to say they have to support each person’s needs…BS). I did finally hear back from a nurse and over 3 conversations here is what I was able to find out. Kaiser does not support any type of treatment for covid besides the antibody treatment. The problem with that is that they also do not offer that directly and that people have to seek treatment out of network if they want even the antibody treatment. Then they also treat their members like they know nothing about science or current happenings in medicine. I would like to call BS on Kaiser again and I did tell the nurse to stop treating me like a child (which she was doing) and that I had several degrees and knew a few things about science (LOL). People really should look people up before they start talking down to them. 

What does this mean? That Kaiser does not support its members and it does not care about their health. Also it is way behind on medical treatments when compared to other medical providers. 

So with this in mind I decided to build a place for people to go to in order to find resources, to share my own covid story, and to also start tracking the history and events of covid. I will be re-sharing some previous articles I have written on covid, pictures I have taken over time to document the outbreak, and everything else I can find on the subject. 

People need support out there for covid and if medical providers like Kaiser will not provide it. Then I will.

 I will fully admit that I believe in the vaccine and face masks. I blame all the anti-maskers and anti-vax people for the mess that we are still in and for my own infection. I can only do so much to protect my own health, but if others are going to force their freedoms above other people's very basic right to life then they need to be stopped. We need to look at all of science and be willing to try anything to not only stop the virus, but also to help our fellow human beings. Stop being selfish. 

Welcome to your new headquarters for all things covid in Colorado and beyond.

Background image of page is from: https://www.who.int/health-topics/coronavirus#tab=tab_1

Covid Day 5

 So with my symptoms starting on Saturday I will consider this day 5 of my infection. A little scared since one of my friends that has had covid twice said that the breathing problems for her and her husband started on day 7. She lost her husband on their second infection. So yah, I’m scared. I’ve also read about the damage that covid has caused to its survivors. So I have that to think about as well. 

Since I am not getting any help from my so called “medical providers” I’m trying to do as many different over the counter options as I can do. So here is what I have started so far. 

-Dayquil & Nyquil: these don’t seem to be really helping with the congestion I have. I have had sinus infections before, but this one burns like nothing I have experienced before. Plus, I’m having a higher percentage of blood then I’ve seen before as well. The only thing these seem to be doing is keeping the fever in check.

-Zinc: Stared a 50 mg tablet once a day.

-Multivitamin: Yes, I know that this should be a part of my everyday health plan, but I forget to take them more then I take them. Right now adjusting that so that my body has as much as it can to fight this.

-Adjusting my drinking: I normally fight with drinking a lot ever since my kidney stone incident. (That’s another Kaiser nightmare/covid timeframe that I will cover in a different post). As part of this I am drinking more orange juice, Gatorade, and tonic water. Yes, tonic water. I know about all the arguments around quinine. My take on it is at this point it is better than nothing which is what Kaiser is giving me. I figure that having some in my system is better than nothing and the more I can make my body a hostile place for covid the better. Quinine did prove useful in the history of men’s fight against disease and who knows what other uses it can have. When talking to the Kaiser nurse she said that I didn’t understand that medicine are only approved for specific things. She must never have heard of the off use of drugs. From personal experience I can say that beta blockers (normally used for heart issues) are a wonder drug for migraines. I had a neurologist that was willing to do what was needed to help his patients which Kaiser seems to be lacking. Like I said I have had a lot of personal experience with medicine, doctors, and a large variety of health issues to know when a doctor or medical group is pulling BS from their ass. This also doesn’t count formal training I also have. LOL. Anyway sorry for going off so much on this one. 

So that’s it right now. Not much, but better than the “Tylenol” the nurse told me to take to keep my fever in check. I told her I wasn’t taking Tylenol because Dayquil and Nyquil already has acetaminophen in them and she seemed taken aback that I knew that. Medical providers really believe that people are stupid. Joke on them.

2021 October News

10/21/21: "COVID-19 and Heart Damage"- https://www.news-medical.net/health/COVID-19-and-Heart-Damage.aspx

Too Little Too Late? CCCS Finally Does Something to Address the State's Covid Mandates

Republished from A Coloradoan In Education. Published 10/7/21.

https://acoloradoanineducation.blogspot.com/2021/10/too-little-too-late-cccs-finally-does.html

So previously I had talked about how CCCS was just openly ignoring things released by the state. Joe Garcia finally decided to do something…. the date was set as September 20^th by the state and here it is October 7^th that there is finally some word that CCCS will sort of follow the state employee mandates. The only good thing is that they are expanding it to include students. So the state guideline had said that employees that were not vaccinated would have to do testing two times a week. Well, CCCS is now saying that that it will only require a once weekly test if you are not vaccinated. Then there is also a question of how this will be tracked… I have some ideas on how this will work, but trying to get there is going to be messy due to limitations with technology and data. 

Anyway, this is still fresh from the press so you can look at it.

Accessible Costumes 2021

 

This is the first year that I have seen a formal release of accessible costumes. A lot of places are referring to them as "Adaptive Halloween Costumes," so you may need this wording when doing your own searches In most cases these costumes are not cheap, but most costumes now are day are ridiculously priced any way for their quality or lack thereof. The great thing though is that you can find them not only online, but also in the stores. The prices I have seen run anywhere from $9.99 for basic chair accessories to $100 for the fuller covers.

Disney 

(https://www.shopdisney.com/halloween-shop/costumes/adaptive-costumes/):

The nice thing is that some of the Disney ones are on sale right now. It looks like these are more in kid sizes. There is also a warning on these that the person in the wheelchair loses the ability to push themselves and they must have someone push them. Below is an example of the info they provide for the Cinderella's Coach:

Target

(https://www.target.com/c/adaptive-halloween-costumes/-/N-66yhm?Nao=0):

Some of what stores are calling "adaptive" costumes are just costumes with less fabric that won't get caught in the wheels or additional holes/flaps for tube access, so keep this in mind when buying costumes. On Target's site I had to search for both "adaptive costumes" and "wheelchair costumes."

 

Then some of the wheelchair covers are being sold as multipurpose for either bike or wheelchair. I was able to find some of these in person at one of the smaller Targets in the Denver Metro area.

https://www.target.com/p/light-up-pumpkin-wheel-cover-halloween-costume-accessory-set-hyde-38-eek-boutique-8482/-/A-81565112

Party City

(https://www.partycity.com/search?q=wheelchair+costumes&lang=en_US):

They are carrying a lot of the same ones that were above, but had a few others.

Halloweencostumes.com

(https://www.halloweencostumes.com/adaptive-costumes.html?q=wheelchair%20costumes&PCID=20&utm_source=Skimlinks&utm_medium=affiliate&network=CJ&affiliate_id=5370367&link_id=10870827&cjevent=0100a96823fc11ec82b1bbac0a1c0e12):

This site as well had many of the same options as the top 2 and then added a few more.

Spirit Halloween

(https://www.spirithalloween.com/catalog/search.cmd?q=wheelchair+costumes&form_state=searchForm&keyword=wheelchair+costumes&affiliate_id=21181&utm_campaign=AFF%3APJ&utm_source=pepperjam&utm_medium=affiliate&utm_inex=e&utm_content=2-236930&click_id=3713799977&clickId=3713799977):

They actually had the smallest selection with only 3 on their site....

Picture 1 from: https://www.themainstreetmouse.com/2021/08/16/disney-expands-adaptive-costumes-and-wheelchair-cover-sets-unveils-full-2021-halloween-lineup/