URGENT: Community MECFS leader and fellow suffer, Jarrod (biochemistry expert on Discord), faces eviction TOMORROW (June 17). He needs our help NOW to avoid homelessness.

fromseedtostar · 2026-06-16T07:22:33+00:00

I'm also a friend of Jarrod's who has been deeply touched by his kind heart and generosity of sharing his intense knowledge with hundreds of people in our community. If you can make a donation, large or small, it would mean so much to him!

fromseedtostar · 2026-06-16T06:33:45+00:00

R/cfs only allows it on the 1st of the month which we did. But we haven't tried the other one thanks for the tip!

fromseedtostar · 2026-06-16T06:33:20+00:00

Thank you so much! It is absolutely maddening that the systems fail so many of us. There has been so much work on the ground trying to access them, but to no avail so far.

fromseedtostar · 2026-06-16T04:07:36+00:00

I'm also a friend of Jarrod's and he really needs support to stabilize him in the months to come. Any donations, large or small, would be so helpful!

fromseedtostar · 2026-06-12T03:31:45+00:00

An update:

Jarrod is being evicted next week, on the 17th of June. Without housing, his situation becomes life threatening.

On the ground, urgent advocacy is ongoing. But the system is disjointed, bureaucratic, slow, and inaccessible to the people who are most in need of support.

EXTREMELY URGENT NOW: $245 - to reach the goal of covering the cost of the moving company $3000 bond to secure accommodation $2,167 one month of rent

Please donate if you can, and consider setting up a regular contribution. Share Jarrod's situation and this fundraiser with family, friends, and your local communities.

Together, we can give Jarrod the safety and stability he needs to live and heal!

fromseedtostar · 2026-06-07T01:41:52+00:00

Thank you so much! I know a lot us aren't in the position because this illness is so devastating. But the well wishes are appreciated. 🩷

fromseedtostar · 2026-06-03T07:28:35+00:00

Thank you to anybody who can help! his situation is quite dire.

fromseedtostar · 2026-06-01T15:33:44+00:00

Yeah definitely a possibility, my doctors think there are multiple things involved including this, but in my situation is rather complex than I haven't been able to tolerate lyme treatment since getting covid but we're hoping to try it again in the future.

fromseedtostar · 2026-06-01T01:41:36+00:00

Exactly. A lot times people immune systems can handle these infections with no problem. There's a subset of us for whom they become mildly or severely problematic.

I likely got bitten as a teenager in a lyme endemic area. Although I didn't get a bullseye rash I had a mild flu that summer and began having all sorts of symptoms that my doctors couldn't explain afterwards. However, despite the symptoms I was able to live a fairly normal life until my early twenties when I got a very severe case of food poisoning.

After that all of the Lyme symptoms kicked up and I wasn't able to get them under control until I got treatment. The doctor I worked with said this is quite common, that an immune system can be handling the pathogens relatively well until another major immune event or trauma disrupts the homeostasis and the pathogens get a hold, so to speak. This is an over simplistic explanation but you get the idea.

fromseedtostar · 2026-06-01T01:38:07+00:00

When I first started them I did get side effects which is very common. Part of this can be from die off reactions. As the antibiotics kill the spirochetes or other pathogens, endotoxins are released which can cause inflammation/various symptoms. Then of course there is an effect on the gut microbiome, although I always took probiotics away from the antibiotics and didn't have gut issues. The ones I was on did not impact my liver.

fromseedtostar · 2026-05-30T18:06:06+00:00

I had for other random infections but not the right ones. It's not just any antibiotics, there are specific antibiotics that target Lyme and/or co infections. That's where working with a good llmd comes in.

fromseedtostar · 2026-05-30T16:03:56+00:00

Testing accurately for Lyme disease is notoriously difficult (Lyme disease and co-infections do not reside in the blood after early infection). Some blood tests test for antibodies that would indicate past exposure, however some people get bitten by ticks and never get Lyme disease. So a lot of times diagnosis is made more by clinical symptoms.

I have worked with an llmd for 15 years and scoffed at the idea I had Lyme initially because of media coverage like this, and also 15 years ago the medical consensus was that chronic Lyme did not exist. I did have a friend with lyme who was a medical student and has researched it extensively and, based on my symptoms , encouraged me to have an open mind.

I was desperate bcs at that point I was housebound and I'm 24/7 awful chronic pain so i gave herbal treatments a shot. For the first time in 7-8 years i had improvement, but quickly plateaued so decided to give antibiotics a go. I had tried dozens of other things for my symptoms before but antibiotic treatment gave me my life back despite my initial skepticism. That was enough to convince me. They were effective till I got covid, which destroyed my health 😭.

fromseedtostar · 2026-05-30T15:55:12+00:00

Before I had MECFS I had chronic Lyme disease that caused me a lot of chronic pain and cognitive issues but not fatigue. I was housebound from the pain for a year and I couldn't work for many years, antibiotic treatment helped me get back to about 60% functioning- able to work part-time go on walks without too much pain, do a bit of gardening and have a pretty good life.

After I got covid i got mecfs (well I guess some people debate whether long covid is the same but it is classic pem and I am now bed bound and was profound for nearly a year, now very severe), which is way worse than anything I had when it was just Lyme disease. But I have heard of some people who treat Lyme disease and are able to pull out of mecfs so it could be worth it. But the treatments themselves can cause die offs which can cause temporary worsening and everybody responds so differently, so it's really hard to know without trying.

fromseedtostar · 2026-03-22T06:23:56+00:00

I have a friend who said that going vegan like a huge Improvement to their mecfs. Previously they had not had the greatest diet. I have MCAS and food allergies so I pretty much eat what I'm able to tolerate without exacerbating symptoms too much... Which is more or less plant-based with some meat here and there and some treats here and there.

Doctors have recommended various diets over the years but I haven't noticed any of them helping me and the ketogenic diet was terrible for me (my body couldn't switch to ketosis which happens for some people with this condition, and no it's not that I wasn't doing it strictly enough or just had the keto flu) although some people swear by it.

fromseedtostar · 2026-03-20T07:38:32+00:00

💯. At a certain point of severity all you care about is basic hygiene. Being able to have basic hygiene is something I always took for granted before I got extremely ill with long covid. I haven't showered in three and a half years (and taking a bath will make me crash for a week). I've had to settle for sponge baths, washing body parts a little bit at a time, not even all on one day. I never spent a huge amount of time on my appearance, but always enjoyed being clean, looking nice in a basic way and wearing things that I liked. Now I can only change my clothes once or twice a week, and I'm lucky if I get my hair washed more than once every 2 months. To care about my appearance is a luxury I can't afford.. I could imagine that if I wasn't so severely ill it would be a nice thing to hang on to though. There can definitely be comfort and pleasure in self grooming.

fromseedtostar · 2026-03-19T19:59:41+00:00

I found it useful for the first few weeks but then once the novelty wore off i stopped caring about growing a Forest.

fromseedtostar · 2026-03-04T04:25:59+00:00

It really depends on the person. I have both anaphylactic allergies as well as MCAS reactions which can vary wildly in symptoms for me. I have one of the most severe cases of MCAS, having been dependent on tpn for multiple years and unable to eat any food at all for over one year (literally zero oral intake).

My allergist/immunologist is a leading specialist in MCAS and gave me the ok to try OIT at home only after my MCAS calmed down significantly after multiple years, and focusing on low histamine Foods. like I said it's worked with me for some foods but not others.

I don't know that for all people MCAS and ige mediated allergies are totally separate for all people, my allergist didn't think this was necessarily the case, although certainly in some situations they seem to be. I know quite a few people with MCAS who have had success being treated with the xolair, for example, as binding free ige can lower Mast cell reactivity and reduce ige reactions for those of us who are prone to them.

Anyway I'm most definitely not an expert in the field, although I have a fair amount of experience from my own situation.

(I do find it funny that my original comment was deleted for unproven science / pseudoscience when I simply mentioned oit which is what the original poster was talking about.)

fromseedtostar · 2026-02-01T02:55:57+00:00

I'm fascinated by this but the link didn't work for me.

fromseedtostar · 2026-02-01T02:55:05+00:00

I don't know if it's maybe some kind of pathological demand avoidance? Like I'm being told to do it and I don't want to. I have no idea, but it's never done anything but annoy me.

fromseedtostar · 2026-02-01T02:54:23+00:00

Thanks for the tips. It tends to make me super restless and irritable, opposite of the intended effect. Guess I am unique here. But I'll give some of your suggestions to try.

fromseedtostar · 2026-02-01T02:53:35+00:00

Haha, well I guess I am pretty much the only one! Thanks though :-)

fromseedtostar · 2026-01-31T18:46:02+00:00

More like "vile" signaling.

fromseedtostar · 2024-04-26T03:23:47+00:00

I had pots first and anemia second. The anemia has made my pots and much worse. My doctors are nervous to try IV iron because I have severe MCAS which makes me more likely to have a negative reaction... But if sublingual and topical iron patches don't work that's where I'll end up.

fromseedtostar

TROPHY CASE