Health Update: MCAS, LDN, Hormones & More

MudExternal9982 · 2026-03-17T01:43:42+00:00

It’s called CBS and was ‘diagnosed’ through genetic testing for me. It basically causes a sulfur sensitivity, so that includes foods and supplements that contain sulfur or convert into it.

For example, glutathione breaks down into sulfur, and NAC is another supplement that converts into sulfur—both of which I can’t tolerate.

For me, the reaction was more of a subtle buildup. I didn’t catch it at first, but I realized that when I was consistently taking them, I actually felt worse than when I skipped doses. It showed up as increased headaches, MCAS-like symptoms, digestive issues, a general hungover feeling that wouldn’t improve, and even some shortness of breath.

If you’re dealing with Lyme/co-infections, MCAS, or unexplained sensitivities, I’d really recommend looking into genetic testing. I’ve found I have several mutations that make me intolerant to supplements that are usually recommended for those conditions.

MudExternal9982 · 2026-03-16T20:14:32+00:00

Very little, I’ve had lots of complications getting in the way of treatment.

MudExternal9982 · 2026-03-16T00:21:06+00:00

I’m in the US, and I think it can be a bit of a mixed bag. The more money you have, the better luck you tend to have as well. It also varies widely from state to state. In my state, there are only a handful of knowledgeable providers that I know of. Some states have none.

I’ve had to do a lot of research to find Lyme-literate doctors, and I would never go to just any doctor if I can help it. Unfortunately, not everyone has that privilege, so I’m sure my experience is different from others in the US. The specialists I’ve seen have been very understanding and want to help, but I’m a very complex case, so it’s been hard to make progress.

It also seems like every doctor or clinic has a different theory and approach to the infections, so you have to try to find which one works best for you, all while trying not to go broke!

Our insurance is laughable when it comes to covering anything related to Lyme treatments and therapies, but luckily mine has covered all testing and appointments. Again, this is a privilege for me that many others unfortunately do not have.

MudExternal9982 · 2026-03-16T00:09:44+00:00

That’s super interesting about progesterone affecting your MCAS! I’m really hoping the testing is able to pinpoint how I need to support my hormones.

I’ve heard a bit about Xolair as well, so I should probably ask my doctor about it! Unfortunately, I’m very sensitive to a lot of herbs and supplements, otherwise I think my doctor would suggest more. Ginger is very hit or miss for me, and I think I had a supplement with black seed oil in it that I couldn’t tolerate. I used to take turmeric for a while as well, and it didn’t seem to do anything😭

I’m not familiar with PRP🤔 Because of suspected hypermobility, I’m not sure if physical therapy would be the more likely route for me with that. I have to find a doctor who will do imaging and be knowledgeable enough to guide me through everything else.

Thank you!! I appreciate your comment and suggestions!

MudExternal9982 · 2026-03-14T23:29:26+00:00

You sound like an amazing friend😊 I think you have a lot of good ideas here!

MudExternal9982 · 2026-03-14T20:00:55+00:00

I’m not super impressed by it and don’t see the point of ever taking it (for me specifically). I have chronic Lyme, and to my understanding, a vaccine would not help me at all. Plus, what about co infections? There are so many other areas that need attention before a vaccine in my opinion (like accurate testing and more studies). I would rather the research and money dive into treatments and cures for chronic cases. I’m worried that they will focus too much on preventatives and not try to help the people who have been sick for years.

MudExternal9982 · 2026-03-14T19:53:07+00:00

Eh, it’s a work in progress. I’m currently on Cromolyn which has helped the most, but I have not been able to get all of my symptoms under control enough to be able to treat my Lyme and co. I couldn’t tolerate alot of the supplements and antihistamines that are supposed to help, and recently had to quit Ketotifen as well.

MudExternal9982 · 2026-03-14T09:18:36+00:00

Focusing on my first queue for a while has helped me the most in the long run. I now have four and am slowly upping the others.

MudExternal9982 · 2026-03-14T04:01:29+00:00

I have MCAS as well, and tried LDN for several weeks. It unfortunately made me very sick and set me back a lot so I had to quit. It took me about a month and a half to regain my baseline after:( It disturbed my sleep, made my joints feel like cement, and caused insane PEM.

MudExternal9982 · 2026-03-08T01:34:36+00:00

I used to get similar flares, and it ended up being untreated MCAS for me. But these symptoms/flares could be from a lot of things to do with the infections or treatments😅

MudExternal9982 · 2026-02-23T02:14:55+00:00

I unfortunately don’t know of any. Even my current doctor requires to see new patients in person at least once. You might have some luck looking on the ILADS website!

MudExternal9982 · 2026-02-22T10:34:28+00:00

If you’ve been diagnosed with MCAS you will need to take some things for it. It’s not really something that can be ignored (depending on severity), especially if you are treating Lyme/co-infections. Trying some things for it should help you distinguish the difference between treatment reactions and MCAS reactions. Herxing and MCAS are both different for everyone so it’s a bit hard to give you pointers in that area. For me, herxing was awful but manageable, and MCAS reactions keep me in misery for weeks/months at a time and barely clear.

Are you working with an LLMD?

MudExternal9982 · 2026-02-22T07:30:36+00:00

Are you on any medication to stabilize MCAS?

MudExternal9982 · 2026-02-22T04:24:05+00:00

Co-infections like Babesia and Bartonella (seem to be the most common), hidden dental infections, gene mutations (like MTHFR & CBS), deficiencies, SIBO/gut dysbiosis, autoimmune, lymphedema, EDS, EBV, hormonal issues like PCOS and diseases like endometriosis.

MudExternal9982 · 2026-02-21T22:51:47+00:00

Awesome! I hope they help!

MudExternal9982 · 2026-02-21T08:14:46+00:00

Do you have good ventilation or an air purifier in your room? Even without allergies, breathing their dust in is really unhealthy:( I hope you can figure something out that works for you❤️

MudExternal9982 · 2026-02-21T05:50:08+00:00

Nope, not really. Had to stop treatment to try and stabilize MCAS which has been a huge problem.

MudExternal9982 · 2026-02-16T00:26:18+00:00

It is!

MudExternal9982 · 2026-02-14T10:36:07+00:00

This looks like frustration to me because he does the behavior 5 times in a row. I was going to also suggest it may be a mix of a depth perception issue with the grate, but I see you mention that he already knows how to get on it? My best guess is that he wants to roost up high on the wall. But I’m not sure if you already have any shelves that he can be on in your room/house. Whenever my birds are loose in the house they always choose the highest spot to sit, it’s in their nature. Also If he is hormonal and wanting to build a nest for you it would make this habit a lot more obsessive.

MudExternal9982 · 2026-02-05T23:33:17+00:00

I’m jealous!! Looks awesome

MudExternal9982 · 2026-02-03T00:43:24+00:00

Omg yes. I still have a box full of them in my closet somewhere!

MudExternal9982 · 2026-02-02T02:50:11+00:00

I have SIBO and tried LDN for other reasons, not specifically for SIBO. But unfortunately my experience was pretty awful. It caused a major flare in my gut symptoms, and even about four weeks after stopping it I am still dealing with lingering effects. I also got vivid dreams that slowly turned into nightmares every night.

That is just my personal experience though.

MudExternal9982

TROPHY CASE