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Can we start a CIRS thread?

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Posted 1/7/2024 5:10 AM (GMT 0)
I looked through the previous few pages and didn't see anything directly pertaining to that, but if this is outside of this forum's scope, than please remove it. I know there are a couple other regulars here who had had a CIRS diagnosis and would like to start a convo about it. I'm currently in a CIRS protocol but am worried about the length of time and progression of my illness. I have recently had some tests come back and it shows demonization, as well as 4 areas of brain atrophy on a NeuroQuant, along with a CIRS score of 5 and Lyme score of 2.
For those of you who know me from years past, my brain is badly effected. Heavy, 24/7 derealization, disorientation, inability to feel time, place, emotions, feelings, etc. Additionally, I also see the world very faintly. As in, my conciousness is so dim the whole world looks like it's fading to black. These have all been here since 2013.

I also have the standard things along with this- adrenal fatigue, POTS, MCAS.....but my brain is by far the worst. I'm wondering what anyone else's labs show, or their experience is. It's hard to find others have have gone through the treatment and recovered, tho I am always looking.
Posted 1/7/2024 8:05 PM (GMT 0)
Howdy, Aerose91:

I'm not sure if any of it will be helpful, but I was on the Phoenix Rising forum and searched "CIRS" (searching titles only) and found the following results:

https://forums.phoenixrising.me/search/873108/?q=cirs&c[title_only]=1&o=date

If not restricting the search to titles only, more results will appear.

https://forums.phoenixrising.me/search/873111/?q=cirs&o=date

Another site that a friend recently shared with me is:

https://biotoxin.com
https://biotoxin.com/cirs-overview

Otherwise, I'm sorry that I don't have more to offer. I've never had to deal with CIRS. (I'm dealing with CRS, but that's a different issue and I'm not sure if it's Lyme-related, age-related, or some of both.)

Take care, friend.

Dude
Posted 1/7/2024 11:52 PM (GMT 0)
Aerose - you can certainly start a new thread.
Posted 1/8/2024 3:43 AM (GMT 0)
Thanks, Girlie and DudeAbides. I know there are a couple here who have been through it or been diagnosed, anyway. I'm not sure of it was CIRS from mold or Lyme but regardless......
I've actually been on the PhoenixRising forums a bunch but there is still a lack of cohesive community on CIRS there for some reason. It would be nice to have a place to bounce ideas off of
Posted 1/8/2024 9:13 PM (GMT 0)
I was diagnosed with CIRS, based on the usual panel of CIRS labs. I know you have heard a lot from me, though! I hope others with a CIRS diagnosis chime in.
Posted 1/10/2024 12:17 PM (GMT 0)
Saraeli- I was hoping you would find this. Did you make any meaningful progress on VIP? I know we have talked about that before but pardon my memory
Posted 1/10/2024 3:03 PM (GMT 0)
about a month ago, there was a thread about the Shoemaker protocol, so maybe one of these folks could be helpful: https://www.healingwell.com/community/default.aspx?f=30&m=4332589

I felt better with the early steps (plus specific MCAS treatment) so never did the VIP step. I hope someone who has tried VIP therapy can weigh in for you! Neil Nathan says in Toxic that mold doctors are finding that patients using VIP nasal sprays are seeing improvement when they use it earlier in their treatment, even before eliminating mold exposure. (Shoemaker included it as the last step of his protocol.) Seems worth a try!
Posted 1/10/2024 3:39 PM (GMT 0)
i have ordered vip nasal spray recently. i have had mold exposure prior to becomming ill, actually like a lot of mold before getting sick actually.

i will test it once i have recovered from my latest crash caused by thymosin alpha-1. its really bad i am arround 5 days into the crash and still aint out of it, and i only took 0.5mg + 1mg tb500 lol..

back to topic: i will comment my experiences on VIP nasal spray and hopefully it will be useful for our community.

greetings
Posted 1/13/2024 6:42 PM (GMT 0)
Blazer- definitely let us know how that works out for you.

Saraeli- what is your current status, are you recovered? I am considering finally getting Neil Nathan's book but tbh, after 12 years of this now, I'm burned out. I'm finding it so hard to stick perfectly to a diet and avoidance protocol but I know I need to get back on it. I'm so reactive to nearly all foods I know I should restart GAPS. The idea of several more years of a gut healing protocol sounds so exhausting but I know I need to do it.

I am currently holding at the MARCONS phase of my treatment as the nasal spray has been unable to eradicate it. After that I should be able to start VIP.

Is your reactivity gone? Mine is so bad, I need to have that completely gone
Posted 1/13/2024 8:10 PM (GMT 0)
I think I have commented on this before… so ignore my negative bias if so.

I did shoemaker protocol as my first move thinking I was purely mold illness. It’s hard to assess the protocol as it probably won’t work when you have an active infection triggering CIRS also. And how does anyone know that it’s inactive?

Interestingly I was living in my dad’s condo 2020 post mold issue apartment at my health bottoming event. Which I just HERTSMI’d (looking to move again) and it was an 18… I didn’t start to improve until I went back to my moms 3-4 months later which had a clean ermi, I also shortly after started herbals but CIRS labs (tgf beta 1, mmp9) dropped significantly pre herbals/post move.

VIP made me feel horrible. I don’t think MARCON’s ever can be fully eliminated, nor do I think they’re worth exploring outside of colloidal silver if you just want to see what happens. Some report benefit but so does placebo.

I don’t agree with strict avoidance. Limbic system programs focus on the negative mindsets that things like avoidance cause which increases stress/inflammation.

The HLA data for “mold gene” is highly disputed. I don’t have it, or the Lyme one. I do however have a 50/50 MSH susceptibility gene which suggests when MSH is low I could react like the mold gene. And my MSH was below range.. and vip didn’t help symptoms so that’s all very blurry.

Would I respond different if I went down that path now? I’m not sure. But I would do 20 other things before.

However I encourage everyone to follow what resonates with them and to be open to possibilities - which includes myself in keeping an open mind and following other things, even when I might not see it the same. So keep us updated smile
Posted 1/13/2024 9:33 PM (GMT 0)
I can agree to that extent that its pretty narrowminded to think that CIRS is only caused by mold.

The term Chronic Inflammatory Response Syndrome is quite good to describe whats going on in Most of the patients but to think its Always mold and never Something else Like perhaps fungal infection, bartonella , Borrelia , babesia, parasites etc.

And Sometimes its none of the above.

Works the other way arround. I have been at many LLMDs and was Led to believe everything and their Uncle has lyme. This is Most ceirtanly Not true. Do chronic courses exist? Yes, of course they do.

What i Miss the Most in medicine and in "alternative medicine" as Well is seing the patient as an individual Case with specific needs and each one has a different Story , cause and disease.
There will never be a true one Size fits all.

Yeah Just my 2 cents
Posted 1/15/2024 4:41 PM (GMT 0)
I remember Greg, the Biotoxin Journey blogger, had repeated episodes of MARCONS. He talked about the connection between MARCONS and dental cavitations.

Here’s the page where he discusses this - under the heading Cavitations - Re-Infection:
http://biotoxinjourney.com/cavitations-revisited/

His last updates on the MARCONS page was pretty old. I know Shoemaker protocol no longer uses BEG spray due to too many adverse effects. They switched to something different.
Posted 1/17/2024 11:19 PM (GMT 0)
I just had a follow up with my doctor today and he said he believes my inability to clear MARCONS is due to still being exposed. Hence my c4a being elevated. His belief is Actinos. I've never heard of it but I guess that's a newer found trigger of CIRS. Its so frustrating to feel like I'm still unable to progress because my c4a and tgf-b are still high. I lived in a tent for 5 years and I'm still testing high for this stuff. So I can't even go back on MARCONS treatment until this stuff is tended to
Posted 1/18/2024 8:12 PM (GMT 0)

Aerose91 said...
I just had a follow up with my doctor today and he said he believes my inability to clear MARCONS is due to still being exposed. Hence my c4a being elevated. His belief is Actinos. I've never heard of it but I guess that's a newer found trigger of CIRS. Its so frustrating to feel like I'm still unable to progress because my c4a and tgf-b are still high. I lived in a tent for 5 years and I'm still testing high for this stuff. So I can't even go back on MARCONS treatment until this stuff is tended to

Better health guy has a podcast on actinos. A weird little talked about area.

Ignore the rest of this if you don't want opinions but since you posted I'll give mine. Shoemaker even says he doubts if MARCONS ever fully go away, Dr. Ackerly (head of functional medicine) says she'll give it one whack and move on, Dr. AC (ILADS) doesn't explore them anymore. You'll also get people who will say staph can be natural to the microbiome in healthy quantities.

"Its so frustrating to feel like I'm still unable to progress because my c4a and tgf-b are still high." and what does frustration bring? Inflammation, hyperactivates the limbic system, reduces immunity and cellular function etc.. and since you want to feel better it would be natural to say **** it and live in a tent. Suddenly the world is dangerous and only the tent is safe. What about where the tent was made? The warehouse it was stored? The store it was sold in? -> this is the line of thinking a CIRS doctor puts a patient on - given I took it to a further extreme for examples sake. But a lot of these "thinking" decisions are essentially clinical guesses. And as you said you've lived in a tent for "5 years" and still have "this stuff". So naturally you're probably thinking how to further protect yourself form mold, looking at more possible sources which never really ends... and for conversations sake lets say there's a low level RBC infection still existing causing elevated CIRS levels, impairing detox, whatever else you wanna guess... then would all of this avoidance and stress about mold have mattered much? could one then say it was actually harmful to the patient?

I wanna emphasize I'm not trying to be negative here or bring pessimism into your health decisions.. This is the perspective I've developed from my journey and it feels fitting to share for you or anyone else who is considering a CIRS approach.
Posted 1/19/2024 3:09 PM (GMT 0)

Aerose91 said...
I just had a follow up with my doctor today and he said he believes my inability to clear MARCONS is due to still being exposed.

Exposed to what? Mold?

Didn’t you say you were taking Welchol? How long have you been taking it? Have you felt any improvements?

My Mom took Welchol for a month. She had 6 nosebleeds while on it. I couldn’t tell it did much for her. Cholestyramine is much stronger. I would definitely use Cholestyramine for a while before giving up on the CIRS angle.

——————-
I understand the negative perspectives of people regarding mold. However, I am clearly affected very strongly by mold in buildings and cars (as opposed to outdoor mold). I don’t react much to outdoor mold unless I am also being exposed to indoor mold or have recently removed myself from indoor exposure.

To be clear, I should say that there were years where I went around in circles unable to tell if Lyme/co or mold exposure were the cause of my symptoms. I was living in a house during those years. I needed to live in my car a few years and not go in the house at all and stay out of moldy public buildings before I could clearly determine what was what. And for me, it’s definitely mold. Does that mean I’m normal now and have no effects from Lyme/co? Absolutely not. What it does mean is that I am much more stable and functional and comfortable in my own body if I avoid mold exposure.
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