Symptom improvement hampered by emotional apathy

[ABarzen]

Hello! I started LDN two months ago to help treat Mast Cell Activation Syndrome-caused inflammation. I've had a bittersweet experience so far. It's really helping my inflammation symptoms, which I am thrilled about, but it's also making me feel apathetic and disconnected :/ The problem is that the higher the dose, the more inflammation relief I get but also the more apathetic/detached I get. I started on 0.5 mg and increased by 0.5 mg every few days, which was way too fast. For the past month I have been on 0.25 mg/night. I continue to experience improvements as time goes on but the detachment is tough to deal with Does this go away? Will I ever be able to increase my dose to a higher, more helpful level? Not sure what to do here...

[aredtigress Administrator]

ABarzen,

I have a similar experience, without the Mast Cell Activation Syndrome. My main issue is Fibromyalgia. Personally, I found a balance between the pain relief and the apathy.

Recently the Trust has started asking their member doctors to answer questions like these, I'm going to send yours to the team. When I have a response I'll let you know.

Michelle

[ABarzen in reply to aredtigress]

Oh my gosh, thank you so much! I'm glad you have found a balance. How did you work that out? I think my balance is currently on a quite low dose with minimal apathy. So not much symptom relief :/

[aredtigress Administrator in reply to ABarzen]

It would have been more accurate to say it's a compromise. I don't get as much pain relief as I could on higher doses, but the emotional stuff isn't as bad. I'm interested in the answer too

Michelle

[lucasussex]

Hey did you use b12 injections, do you think that cause your Mast cell activation syndrome i think i have this from B12 allergic to something in B12

[ABarzen in reply to lucasussex]

Hmm that's interesting. No, I have had MCAS since I was about 10 and I've never had B12 injections. But I don't tolerate B12 well. I have the MTHFR gene mutation and I was told to take a special form of B12. I had racing thoughts and generally felt hyped up on it. Not good

[Edsand in reply to ABarzen]

May I ask how you get tested for MCAS please ? I am just started to learn about this. I am a long hauler or what you may know as long covid. Thanks

[ABarzen in reply to Edsand]

Well, unfortunately, testing for MCAS is not easy I was diagnosed pretty much by exclusion. I had tried every intervention under the sun for my various inflammatory symptoms and they only got worse and more numerous. I also tested negative for pretty much everything, including the one MCAS blood test I did. It took me 17 years to finally see a doctor who mentioned MCAS (which I had never even heard of before) and successfully trialed me on a mast cell stabilizer. I'm sorry you're also stuck in an inflammatory state I think you are on a really good track in suspecting MCAS, however! I belong to many discussion groups about MCAS on Facebook and there is a lot of talk about how many medications MCAS patients use are running out because so many COVID patients are now taking them. Some members have posted some interesting studies as well, including one about a man who was diagnosed with COVID because of persistent hiccuping. Hiccuping frequently and general digestive tract inflammation is one of my major MCAS symptoms (cromolyn sodium has taken the hiccups away, thankfully).

To learn more, I recommend checking out Dr Lawrence Afrin's book "Never Bet Against Occam." He explains some of the biology of masts cells and the (over 300!) different mediators they release. Because of that variety of chemical mediators and the fact that many of those mediators degrade very quickly, lab tests for MCAS are rather difficult, unreliable and controversial. However, a few do exist. The recommended labs are usually a serum tryptase level (ideally right after or during a flare-up of symptoms if you get those), a 24 hour urinary histamine level (must be handled very specifically by both you and the lab techs, however, and kept cold at all times), and prostaglandin levels. Check out this website for more specific info: tmsforacure.org/tests/. I hope you can get some relief soon!

[Edsand in reply to ABarzen]

Hi

Thank you so much for all the helpful info I have just purchased the book 😊and I am really sorry you seem to be suffering and for such a long time too. That’s interesting regarding testing. Do you think its worth me going to the London allergy clinic if testing is so difficult ? I am just so desperate for a diagnosis for this.

Yes, I get flare ups and also very much so in my weakened spots- for example I pulled a muscle in my back about 15 years ago, so it slightly weakened it with time but nothing serious. Now after a recent spinal mri, I have osteoarthritis in my lower back and the pain is constant? The problem with the flare ups for long covid suffers is it throws confusion in the mix, as to why this is happening and people think it could possibly be reinfection of covid 19 so it’s quite an anxious experience too.

I think regarding long covid sufferers we are just muddling through this, until science catches up and research can help us find out what the cause is and why. 300 wow - Is Bradykinin a mediator? As this has been mentioned a few times as in a storm release- It’s very early days for me on learning lots on this topic, but the book is an excellent start!

If you get flare ups, is this because you are not managing the inflammation?

I would love to have a chat with you one day, if you would be happy to?

[ABarzen in reply to Edsand]

The other difficult part about MCAS is that it's a new and quite controversial diagnosis. I have been to three different allergists, including one at the Mayo Clinic, and none of them mentioned MCAS as a possibility. In fact, I was diagnosed by a naturopath! I recommend joining a Facebook group on MCAS if you are on there and if you can find one, joining an MCAS Facebook group specifically for London or the UK. That way you can get recommendations for doctors who actually take this issue seriously. It's so disheartening to go to the doctor and hear that despite all of your symptoms, nothing is wrong

Your pulled muscle not healing for 15 years and actually getting worse makes me wonder about Ehlers Danlos Syndrome as well. I don't know much about this but it is a very common comorbidity with MCAS. Basically, something goes wrong with your connective tissue, causing weakness and hyperflexibility. I definitely recommend looking into that if you have other muscle and joint issues as well.

Yeah, I can imagine the confusion and frustration! There's nothing worse than feeling miserable AND not knowing why That's kind of a hallmark of MCAS, actually: having either weird triggers (heat, movement, vibration are some) for flareups or no discernible pattern to them. I think the jury is still out as to why flareups happen. The funny thing is that mast cells talk to each other through the mediators they release and one mast cell degranulating tends to make the other mast cells degranulate. It would make sense if already existing inflammation can cause more flareups because the more (and more frequently) mast cells degranulate, the easier they degranulate. So it becomes a positive feedback loop.

Hopefully the research on COVID long-haulers will catch up quickly! I do have some interesting information I came across about lasting COVID symptoms and their possible connection to mast cells: facebook.com/groups/3442703... and sciencedirect.com/science/a.... Bradykinin is a mast cell mediator, yes. There is so much to learn about this issue even for the professionals! I have actually really enjoyed researching this topic. Some of the biochemical processes involved in this illness are really fascinating. I suggest watching a video of a mast cell degranulating. Kind of mind blowing (pun intended). I would be happy to message with you! It's therapeutic to talk about this with people who understand

[Edsand in reply to ABarzen]

Thanks for your reply.

Wow I have so much to learn. The science direct publication by Dr Afrin and his comments are fascinating.

Yes, I will look into Ehlers Danlos syndrome thanks. A deep heat patch on my back is helping.

For now, I have started a low histamine diet and I have cetirizine 10mg and famotidine 20mg. Are these h1 and h2 blockers?

It’s only a couple of days of doing this so far, so no idea if this will help or not. Time will tell.

Do you know if quercetin is good too? Can I take this on top of the others ?

What is your exercise intolerance like ?

I used to be fit and active before Covid and now I can’t walk more than 10 mins and I have to stop. Is this the same with yourself? I just wondered if this symptom matches too with MCAS.

I will also look up your suggestion for mast cell degranulating

Great to chat. I am sure you are most knowledgeable in this area for sure.