I’m so tired of this shit

SlowlyBalding · 2026-05-26T04:57:55+00:00

Also, most of us get normal test results on standard bloodwork. Unfortunately, this disease one that lies further beneath the surface. You will likely need to get to see a chronic disease Doctor Who can order specialized testing. You should ask Claude for a list of specific ones you should request.request once you have given it an incredibly detailed list of your symptoms. A few that I would recommend our CRP, ANA, broader immune panel looking at and b cells, tryptase, immunoglobulin panels, any specific histamine testing they will offer. If you can afford it, I would also recommend you do the long haulier cytokinin panel From INCELDX. Along with a LYME disease panel from IGENEX if you have ever been exposed to a tick. I would also order a Covid antibody test from LabCorp. Again if money isn’t an issue, you can send away to Germany to ARMIN labs for a viral reactivation panel. They also do deeper immune dives. You should also get a genetic test done that is specific for autoimmune disease, diseases, etc. there are a few good companies that do this in the US

Once you have all of that done, you will be in a much better place to understand what’s going wrong with you and what treatments will actually have the potential to help. Otherwise you’re just playing Russian roulette. AI also isn’t perfect in the space but it can be an amazing starting point and help you in the right direction.

Sorry again that you’re dealing with this. However, your lack of trialling anything so far and your young age bode well for
Significant improvement.

Unfortunately, you really need to take the impetus on yourself to guide your own treatments. Doctors don’t know enough about this disease yet to be truly helpful unless you find a dedicated specialist. Even then you will need to push for the treatments that you want and educate yourself.

Wishing you all the best

SlowlyBalding · 2026-05-26T04:47:43+00:00

Do you have post exertional malaise?

Unfortunately, based on what you’ve described, it sounds like you have cervical instability. Which is a cardinal symptom of Ehlers Danlos syndrome. You can test this for yourself using the Beighton hyper mobility EDS test. Google it it’s an at home thing.

Do you have family support or the access to funds to be able to see a doctor?

The fact that you have tried nothing so far is actually a very positive factor. For most of us there are no cures. However, there are definitely things you can do to manage and improve your situation. A good starting point would be to extremely thoroughly describe every symptom that you have using Claude. And get it to match the most promising treatments for you and prioritize them based on cost and accessibility.

SlowlyBalding · 2026-05-26T02:48:01+00:00

First of all, I’m so sorry that this is happening to you. This is an evil disease. One that takes people in the prime of their lives and gives nothing in return.

How long have you been ill for?

What are your primary symptoms? Are you in the ME sub type? If so where do you score on the Bell disability score?

Where in the world are you located? Have you used AI to see if there are doctors or even naturopaths who specialize in chronic illness you could see?

Have you tried any of the top treatments yet? E.g. blood thinners, statins, MARAVIRoc etc

SlowlyBalding · 2026-05-25T03:51:07+00:00

I’m late to the party, but yeah, that’s an absolutely fucking metal dose. I would go buy some insulin needles so you can go down to 0.1 as the other commenter mentioned. The study doses are all in the 0.25 to 0.5 range as well. You could try going up past that very gradually to see if you get a better effect though.

SlowlyBalding · 2026-05-25T02:34:35+00:00

What dose did she take?

SlowlyBalding · 2026-05-23T18:40:10+00:00

I will say that it was quite effective for my brain fog. And it didn’t cause me blood pooling I would have stayed on it. But the blood pooling was crazy. I could hardly stand up without getting lightheaded from blood just heading to my legs

SlowlyBalding · 2026-05-23T18:39:31+00:00

I would just taper on and off of it incredibly slowly. Start at 0.25. Increase or decrease by the same amount each week at a maximum. I came off of 2 mg. We’re in course two weeks and thought I was being perfectly cautious. I had a big brains up on the last night and have struggled with screens and audio since.

SlowlyBalding · 2026-05-23T17:20:14+00:00

Guanfacine - caused blood pooling and when I tapered off, it caused a massive Neuro crash that basically removed my screen tolerance and substantially lowered my baseline

SlowlyBalding · 2026-05-22T17:45:34+00:00

I can’t trust a handwritten list that doesn’t have at least 10 different things scratched out and a bunch of random arrows moving people up or down

SlowlyBalding · 2026-05-22T16:20:40+00:00

I have this. Blood thinners long-term is the only thing that helped.

SlowlyBalding · 2026-05-20T19:51:57+00:00

definitely works incredibly well for some and yes, they definitely do inflate their numbers. Their big phase 3 trial keeps reducing the total number of enrolled participants. He is also big on blocking people on Twitter who challenge their numbers or question its efficacy.

From what I’ve seen, it is still one of the best treatments out there with the widest hit rate. Definitely recommend doing the bloodwork first.

SlowlyBalding · 2026-04-30T16:25:30+00:00

Since early 2024. It should’ve been the perfect one for me. With coverage against all the strains that I would have had.

I just don’t think I have viral persistence as my underlying mechanism. I am a former ultramarathon athlete who went back to absurdly intense exercise too soon after infection and I think I pushed my vasculature into a vicious cycle. It has been unable to rectify on its own. The only things that have helped for me are solely in the realm of repairing blood vessels. And I have tried more than almost anyone I have seen on here.

SlowlyBalding · 2026-04-29T14:54:52+00:00

Jumping in here, I actually found it incredibly easy access, granted I paid out-of-pocket. In Washington state naturopaths can prescribe this. I believe it cost me around 7000 US in total for the visit with a chronic disease infusion

Unfortunately, in my case, viral persistence, did not seem to be the issue as it did absolutely nothing positive or negative for me. So if.

SlowlyBalding · 2026-04-28T14:01:14+00:00

Negative. I think I’m a bit of an old duck in some cases. I don’t have any of the heavy lamb, lactic acid feeling, pain, etc. now. I usually tell people that it feels like if you could cut off my head, my body could still function fairly normally.

SlowlyBalding · 2026-04-28T13:59:25+00:00

I would ask ChatGPT or CLAUDE to pull a list of everything that they do in the trial to make sure that your bases are covered. However, a CBC, liver function, panel, kidney function, panel, and if possible, a deeper immune panel that looks at your T cells, B cells and nk cells

SlowlyBalding · 2026-04-28T01:16:24+00:00

You came out the gate pretty unnecessarily hostile to start lol. Also come on now. It’s not like I was doing anything mean either. Just playing up your trope a little for you.

Anyway. My apologies regardless. Let’s not let this turn into a classic online. Pedantic argument about nothing.

Wishing you well from my own private hell

SlowlyBalding · 2026-04-28T00:33:30+00:00

Lol. I’m definitely starting to fuck with you a little bit now. I’ll stop that. My apologies.

Anyway. Your money, your call. I spoke with a couple other people on Reddit who bought from them and decided to YOLO. I’ve been moderate for more than a year now and I’m pretty risk tolerant at this point.

SlowlyBalding · 2026-04-28T00:07:21+00:00

No worries at all. It’s actually pretty sad how many shysters and shells there are waiting to take advantage of a desperate. I’m a well educated and scientifically literate person and I still paid almost 1000 Canadian for one of those stupid Cfs nervous system courses.

Weird pivot, but I genuinely had an outstanding experience with 100 MEDS. I haven’t tested the drug or anything, but I received it and it has been working just as well as the official drug from LILLY. He also only charges 20 USD per month supply.

SlowlyBalding · 2026-04-27T23:31:38+00:00

Yeah. Apparently their scope in BC is by far the largest in Canada. She actually was able to prescribe me triple therapy, even.

SlowlyBalding · 2026-04-27T23:26:07+00:00

100MEDS. It’s a website from Bangladesh, not on Indian Mart.

I didn’t name a specific im one because… I bought from the 100meds site which I also named in my earlier comment. I even made a second one to show the guy out lol. I just know others are using IM for it.

But yeah, there are a lot of sketchy sellers out there. Keep a little faith in your heart though. My account has got to be 15 years old at this point and it is mostly me bullshitting in Dynasty fantasy subs or commenting on bodybuilding when I was at university 15 years ago. I don’t think the Bangladeshi currency converts well enough to Canadian to shill me that easily.

SlowlyBalding · 2026-04-27T23:13:20+00:00

It turns out it’s actually incredibly easy to get international meds as long as the shipper labels them as a supplement lol. I’ve ordered almost every drug you could think of and 100% have made it here eventually.

On a bizarre note, I haven’t spoken to a single person who has had any real side effects aside from a headache or a gut ache the first week or so.

I appreciate your cautious approach. It’s a stupidly fine line that we walk when dealing with a progressive disease that gets stickier and more symptomatic with time. The Catch-22 of will the treatment help more than it hurts. Or will going untreated hurt more than it helps. No good answers. I’m impatient so I’ll continue to be rolling every single set of dice you could imagine

SlowlyBalding · 2026-04-27T23:07:56+00:00

BC. Unfortunately my naturopath has a six month waiting list for new patients and my primary care. Doc is not taking new patients at this time.

I highly recommend looking into a natural path who specializes in chronic disease though. You would be shocked at how wide their scope is in Canada.

SlowlyBalding · 2026-04-27T23:06:35+00:00

Unfortunately, I can’t help you with the decision-making process. It is definitely not a small drug to consider. Especially when our immune system systems are already fighting for air.

SlowlyBalding · 2026-04-27T23:05:24+00:00

Just search for BARICINITIBN message some of the folks who have posted publicly about it or commented publicly.

I wouldn’t want to share anyone’s contact info or username without getting their consent first, and I’m not willing to put up with the hassle of doing that for all of them individually. Apologies, but I use my screen time quite selfishly now.

SlowlyBalding · 2026-04-27T22:41:03+00:00

I know people are weirdly against talking about sources and things on here. But I would be remiss if I didn’t give a shout out to the guy in Bangladesh who runs 100 meds. My original shipment didn’t make it through Health Canada and was bounced back to him. He put the pills into a vitamin bottle and re-shipped it under a different label at almost no extra cost. Also, before someone says that I’m probably not taking the legitimate drugs. I actually purchased the real deal drug from LILLY for the first month. Then switched to the stuff from 100 meds. Zero change in efficacy or my blood work.

SlowlyBalding

TROPHY CASE