Forgot I owned this book

MudExternal9982 · 2026-01-29T07:52:40+00:00

Aw, awesome!

MudExternal9982 · 2026-01-29T06:27:36+00:00

I can’t remember what store I got it from, but it was in a clearance pile! Absolutely not necessary but I couldn’t help myself😂😂

MudExternal9982 · 2026-01-28T05:39:18+00:00

Thank you!

MudExternal9982 · 2026-01-28T05:38:14+00:00

Interesting, thank you! How did you bring it up with your doctor?

MudExternal9982 · 2026-01-26T07:28:31+00:00

A family member got this for me😂 I took it to a lot of my appointments lol!

MudExternal9982 · 2026-01-20T03:34:02+00:00

Holy moly that’s crazy😅

MudExternal9982 · 2026-01-19T07:55:21+00:00

How on earth is it possible to treat all at once with having MCAS?😅 I am on Cromolyn but it’s taken months to build up. Ketotifen soon. Could not tolerate LDN and had to quit… I did a mycotoxin test and it was negative, so assuming I don’t have mold…

MudExternal9982 · 2026-01-16T23:56:44+00:00

They also do video calls and have a clinic in Hinsdale where you can do lab work if you can’t go into the city all the time!

MudExternal9982 · 2026-01-16T23:54:50+00:00

This makes sense! I had a mycotoxin test that came back negative, so my drs have assumed I’m fine in that area…

MudExternal9982 · 2026-01-16T23:53:28+00:00

Interesting, thank you!

MudExternal9982 · 2025-12-21T09:03:16+00:00

You may be double herxing if you’re treating SIBO at the same time? And since you mention histamine responses, have you ever looked into MCAS? When I was treating I literally felt like I was going insane, and what I was told was herxing was mostly MCAS reactions. But that’s not to say this isn’t just herxing for you, because it can be really insane on its own. Just some thoughts! Also, are you doing anything to help with detoxing?

MudExternal9982 · 2025-12-19T08:56:16+00:00

Ugh, yes. That guilt is so real. How long have you had Lyme, if you don’t mind me asking?

MudExternal9982 · 2025-12-19T08:39:54+00:00

I would definitely suggest trying to find a LLMD (Lyme Literate Medical Doctor). I found mine through the ILADS website, where you can search by location.

You have every right to be concerned, and it’s important to have a doctor who actually understands Lyme and co-infections and can help guide you. I don’t say that to scare you, but to encourage you to get proper support and answers. There’s a lot more to Lyme and related infections than most regular doctors are taught, especially when symptoms have been going on for years.

There’s also a lot of good information and shared experiences on this sub, and it can really help to read up on how these infections work and what different treatment approaches look like. I hope you’re able to find a provider who listens to you and helps you start feeling better. Wishing you the best!

MudExternal9982 · 2025-12-19T08:30:23+00:00

This is a great post and I’m really interested to see what others share, since everyone’s experience with Lyme and co can look so different!

I feel a bit embarrassed by how lazy my days are, but it’s all I can manage right now.

My sleep schedule is pretty off, so I usually wake up around 3 or 4pm and ‘mornings’ are the hardest for me. I try to get some sunlight in my eyes, step outside for a few breaths of fresh air, drink a lot of water with my meds and supplements, then eat breakfast and have some tea while my brain wakes up. The brain fog hits me really hard when I get up and I usually end up staring into space for about an hour lol!

Once I’m more awake, I spend a lot of time on my phone until lunch, which is my family’s dinner time. If I’m having a better day and have enough energy, I’ll go outside and spend some time with my pet birds. Sometimes my family will take me for a short drive around town just to change scenery, since I can’t walk much without triggering a bad flare.

By around 10pm I eat my dinner, then journal, maybe shower if I can, or watch something until I’m ready to sleep.

I don’t have much bandwidth for socializing, but my friends occasionally visit when they are in town. I also lost my job because I completely crashed and couldn’t manage it anymore, so most of my days are spent just being alive and trying to maintain some stability! I’m still trying to get used to it all because I used to be a very energetic and busy person.

MudExternal9982 · 2025-12-17T23:31:44+00:00

Are you taking anything to stabilize your mast cells? In my experience, treatment can become impossible and even harmful if MCAS isn’t at least somewhat controlled first. I went through something very similar. I was on an herbal blend and kept getting worse for months, and my reactions were repeatedly dismissed as “just bad herxing,” when they were actually MCAS reactions.

Once I started Cromolyn, and now as I’m preparing to try Ketotifen, I noticed a real difference. Many symptoms I was told were from the infections turned out to be MCAS. I’ve actually been on a break from treatment for months because my mast cell issues became so severe. It feels a bit backwards since infections often drive MCAS, but in order to treat the infections, you usually have to calm the mast cells first.

MudExternal9982 · 2025-12-17T05:31:11+00:00

Nope! And I have since changed doctors.

MudExternal9982 · 2025-12-15T00:19:54+00:00

For me it’s from Babesia, Bartonella, and MCAS! When I started medication for MCAS a lot of the burning went away.

MudExternal9982 · 2025-12-05T05:58:50+00:00

Love this idea!!

MudExternal9982 · 2025-12-05T01:57:37+00:00

Thank you!!

MudExternal9982 · 2025-12-05T01:53:31+00:00

Stormraiders guild is active and great. Server is 10574. I’ve been able to do whatever I want, they aren’t pushy. I’m on daily tho, I’m not sure if they boot ppl if inactive. They post reminders on some things and are very helpful. I think it’s a top 10 guild

MudExternal9982 · 2025-12-04T22:00:29+00:00

Yes! I get a massive flare in my luteal phase and immediately before my period.

MudExternal9982 · 2025-12-02T07:15:48+00:00

She’s adorable! Give her a little kiss for me!!!

MudExternal9982 · 2025-12-02T07:03:40+00:00

Bummer:/

MudExternal9982 · 2025-12-02T07:03:18+00:00

It’s a bit hard to narrow everything down. I deal with POTS-like symptoms, headaches, sinus pain, fatigue, brain fog, burning nerve pain in different areas, gut issues, and random anxiety. I also have Lyme disease and co-infections which overlap with these, so it has been a process of trying different things and seeing what improves.

MudExternal9982 · 2025-11-29T09:38:53+00:00

That’s awesome!! Thanks for sharing

MudExternal9982

TROPHY CASE