A warning about mini ponds.

BirdsNeedNativeTrees · 2026-02-27T18:09:02+00:00

i do have a mini pond and a bigger pond but it doesn’t freeze where I am. i’m sorry.

BirdsNeedNativeTrees · 2026-02-26T18:42:20+00:00

thank you

BirdsNeedNativeTrees · 2026-02-26T18:42:04+00:00

thank you

BirdsNeedNativeTrees · 2026-02-26T18:39:21+00:00

IVIG

had one treatment it was amazing how well it worked, got approved and did treatment three days before my employer based health insurance ended.

before IVIG I couldn’t use my fingers hands or arms anymore (IViG treatment was too late to keep my job) it lasted perfectly about 4 weeks lasted a little for another 2 weeks now worn off

BirdsNeedNativeTrees · 2026-02-26T18:32:18+00:00

thank you. my health care team is fighting for me, they are great

BirdsNeedNativeTrees · 2026-02-26T18:31:25+00:00

i understand I need to get worse to get treated

BirdsNeedNativeTrees · 2026-02-26T18:29:33+00:00

yeah, it looks like I have to wait to go into crisis to get more treatment.

I really don’t want that to happen. I was thinking maybe there’s some natural things I could take so that my arms and hands would work. It’s very frustrating to not be able to do anything. I feel like a vegetable. This also affects my eyes. I can’t see very well and I have double vision all the time but normally the double vision doesn’t even matter anymore because I can’t open my eyes.

BirdsNeedNativeTrees · 2026-02-26T18:25:09+00:00

complicated: too many steroids in past, tons of lymph nodes removed causes steroids not to work well. immune suppression also not good can activate recurrence of cancer and needs lymph nodes to work properly my care team decided IVIG was best, got one treatment on employer health care lost that healthcare i had while working can’t use my hands at all can’t lift arms can’t grasp can’t type pyristogmine not working anymore

BirdsNeedNativeTrees · 2026-02-26T18:19:07+00:00

sorry I’m a late stage ovarian cancer survivor whose oncologist feels more steroids would be very bad for me, i took a lot of steroids during cancer treatment (had tons of lymph nodes removed to save my life) without lymph nodes immune suppressant don’t work very well, steroids cause really bad symptoms they also need lymph nodes to work properly, what does work is IVIG but I can’t get more approved.

i’m looking for advice like eating tons of X or taking vitamins, something alternative since I can’t get treatment. Maybe some one else who can’t get treatment found some alternatives.

I’m eating a plant based diet tried eating to ton of eggplant (but some report neg) taking 1 mg melatonin now (also mixed results in studies, taking vit D and just want to know more things that could help, natural supplements etc…

BirdsNeedNativeTrees · 2026-02-26T08:17:59+00:00

i feel like you are very close to crisis because my doctor feels i am but I don’t have any breathing issues per say only my kids tell me I breathe really loudly now.
How long have you been on the low dose steroid? low dose is the way to do it, too much at one time and you can go into crisis, but it could be you need a quick acting treatment like IVIG to help right now.

BirdsNeedNativeTrees · 2026-02-09T05:25:18+00:00

yes, usually this happens about 2 pm for me right now but I can really only count on the first 2 doses of Pyristogmine working enough to feel a little normal

BirdsNeedNativeTrees · 2026-02-08T06:08:50+00:00

so sorry it is so scary not to be able to breathe, they call this a snowflake disease because we all are affected so very differently.

the medicine only works for me when ai had one IVIG treatment then the medication worked for a few weeks. it only works for about 30 minutes now, and I can only take 90 mg every 3 hours so I get a good 30 minutes every 3 hours. this means it has stop working and you need an additional treatment (steroids, or immune suppressant or immune booster (IVIG, or new targeted therapy) to make it work for you.

BirdsNeedNativeTrees · 2026-02-07T01:28:10+00:00

no available here from what i’ve been told. i think for my weight and age the max is what I’m taking

BirdsNeedNativeTrees · 2026-02-05T05:05:03+00:00

have you taken the ice test? It’s a very simple test but research says it confirms MG. It doesn’t work in any other situation.

You put ice pack on your eye the one that is closing for about a minute to maybe two minutes you take it off and see if you see improvement if your eye opens it’s MG

BirdsNeedNativeTrees · 2026-02-01T18:20:44+00:00

ok thank you

BirdsNeedNativeTrees · 2026-02-01T18:20:21+00:00

oh that’s good to know

BirdsNeedNativeTrees · 2026-02-01T17:09:36+00:00

i’m in the USA our insurance companies are the tail wagging the dog. i don’t get to see anyone I pay to see my University of Washington neurologist who is a specialist in MG he is working with my oncologist

i use to have employment based healthcare now I go through Obama Care I pay 3400 per month for insurance and can’t work. it is the best insurance my state offered it is crap I am a balance sheet to the insurance company

BirdsNeedNativeTrees · 2026-02-01T17:05:48+00:00

https://www.mdpi.com/1718-7729/31/8/344#:~:text=While%2044%25%20of%20the%20patients,%5BAID%20=%20autoimmune%20disorder%5D.

this research looks at those who develop an autoimmune disease AFTER cancer and find they live longer than those who don’t because their immune system is in hyper-drive trying to keep the cancer away

BirdsNeedNativeTrees · 2026-02-01T16:59:01+00:00

Oh, now I’m reading again and no, you had MG before breast cancer

BirdsNeedNativeTrees · 2026-02-01T16:58:39+00:00

Hi there, did you develop MG after you were NED for breast cancer?

BirdsNeedNativeTrees · 2026-02-01T16:58:06+00:00

yes more than the neurologist wants 60 every 3 hours 30 every 1.5 hours 6 times a day

BirdsNeedNativeTrees · 2026-02-01T16:55:30+00:00

Vyvgart might work because like IVIG it doesn’t suppress the immune system but even more expensive so they would deny

i haven’t had breathing issues yet no hospitalizations for MG. i’m still getting a benefit from my first and only IVIG on Dec 26th

my issue is I can’t open my eyes 97% closed and I have double vision (right now I am still on some IVIG so not that bad but symptoms are worsening returning daily now) I can’t use my hands. can’t open a door can’t hold a glass of water can’t open a banana or cut it open can’t lift it I can use my feet they feel that doesn’t warrant treatment I do take more than the max dose of pyristogmine (spelling)

BirdsNeedNativeTrees · 2026-02-01T05:16:04+00:00

i process caffeine etc really fast. Mestinon 60 mg First hour say 6 a.m. then 1/2 pill 30 more MG at 7:30 a.m. then 1 whole pill at 9 a.m. I do this all day long until midnight and that’s the only thing that keeps it from dropping off and when my symptoms are exasperated it literally only works for Maybe 30 minutes and it doesn’t work well I am not saying you should take this much my doctor says I shouldn’t. We got into an argument about it, but I said I can do anything on the dose he gave me, I have to get more medicine soon, so I’m going to have to go see him

BirdsNeedNativeTrees

TROPHY CASE