Chronic Inflammation as a contributor to Alzheimer’s

[TheBrain]

Susan and Stavia, thank you for your replies, which gave me a sense of relief and reminded me to stop "beating myself up," so to speak. Susan, yesterday I saw your reply about two minutes before heading in for a much-needed massage. The timing was perfect.

Mimi, I appreciate your patient advocacy work on behalf of people with CIRS as well as your encouragement that I look more deeply into this matter for myself. I will email you to follow up. I am always open to new ideas and information, even if I don't act on them right away or end up determining that they don't apply to me.

I just read the forum topic on "Pregnenolone for hormone support?" in which you wrote the following in response to circular's question about the connection between CIRS and hormone disruption:

All of the CIRS labs point to hormonal disruption. Specifically in the hypothalamus pituitary adrenal HPA axis. This along with suppression of MSH (malanocyte stimulating hormone) causes a cascade of hormone effects resulting in all hormonal systems being disrupted, including ADH/Osmolality, MSH, and leptin. This is the crux of biotoxin illness, and so yes sex hormones are severely altered.

I clearly have HPA axis dysfunction (and I know that thyroid issues can be part of that dysfunction). And, of course, my MSH is very low. I've also had issues with my sex hormones.

[circular]

alysson you and I seem to be in similar places wrt this. We clearly have inflammatory issues but the labs don't scream CIRS, which we also understand doesn't mean we don't have it. I personally would love for your conversation with mimi be in this thread to the extent possible rather than by email so we can all learn. If others get into this testing surely others will have similar difficulties as we do navigating all the issues.

Re: the HPA axis being involved I'm guessing other things, such as you say thyroid, can also cause such dysfunction; OTOH maybe it's the HPA that's making the thyroid funky as mimi suggests.

I can't help but wonder whether what are interpreted as MARCoNS false negatives are just the fact that molds in the sinuses may be transient, caught some times after a recent exposure but not other times. There are two spots in my neighborhood I no longer walk because I've smelled mold when walking at those spots. Say my inflammation is from something else, I may still test positive for mold after transient exposure and it could make prior swabs look like false negatives.

I was really disappointed insurance isn't paying for the MRI (or I have to fight it and I am soooooooooooo sick of fighting wrt my health) and it's put me in a very negative stance toward all this. I really do want the MRI and neuroquant. I'm all about having information and doing the best I can from there, and I just think it's the financial burden that is making me feel so down and critical and looking for holes in any argument I hear. Bah humbug!!!

[circular]

Stavia, if you're still listening on this thread, do you have an update of your opinion of the Shoemaker protocol/worldview? Last I recall hearing from you about it was quite some time ago, and I think at the time you said you hadn't had time to read the studies so you didn't have a firm opinion. I'd be very interested 'where you're at' with it now, whether the same or different. If you had chronic inflammatory issues and access to all the labs, would you go down this path? If the path is sound I do trust the doctor I have to steer me.

For all my bellowing today I really at least want the VIP to address my very low VEGF, and I was told it has to come later in the protocol harrumph.

[SusanJ]

I'll just paraphrase Stavia - anything we do needs to be sustainable over the long haul.

Looking for holes is good, because our choices will never be perfect - no one can tell us in absolute terms what will prevent AD. And I totally understand the balance between wanting to do everything possible to avoid AD, yet not spending time researching, dealing with insurance, chasing down supplements, getting labs, watching the checking balance go down, etc.

Circ, maybe just take a short break from it all and come back in a few days to see if pursuing CIRS further still fits your priorities. Go look for the early crocus and daffodils, and enjoy a whiff of spring (just not the mold ) Hugs.

[circular]

Circ, maybe just take a short break from it all and come back in a few days to see if pursuing CIRS further still fits your priorities. Go look for the early crocus and daffodils, and enjoy a whiff of spring (just not the mold ) Hugs.

Your timing is good with me too Susan, I was out for a walk to see wildflowers in our foothills this morning and it was magical and beautiful! My frustration is after already having had a long break from all this for a while while focusing on other things. I'm overwhelmed in general these days, so my tolerance for all this is lower. Sorry to be a downer. I'll come back around. In fact you come close to making a point that is simmering inside me ... At what point does trying to optimize our health just start making us sick with stress? Of course everyone has to call that for themselves and the answer can change from one day or week to the next.

[Stavia]

Stavia, if you're still listening on this thread, do you have an update of your opinion of the Shoemaker protocol/worldview? Last I recall hearing from you about it was quite some time ago, and I think at the time you said you hadn't had time to read the studies so you didn't have a firm opinion. I'd be very interested 'where you're at' with it now, whether the same or different. If you had chronic inflammatory issues and access to all the labs, would you go down this path? If the path is sound I do trust the doctor I have to steer me.

For all my bellowing today I really at least want the VIP to address my very low VEGF, and I was told it has to come later in the protocol harrumph.

Circ, I still haven't looked at it yet. I know I havent been posting much because I am working so hard but I read everything every day.
A big reason that I haven't is that it appears to be off the edge of what I consider mainstream medicine and uses tests I don't have access to. If I had your issues and your access and your budget? I'm honestly not sure. I am very much a mainstream medicine person and want hard evidence. In my view it doesn't fit into that category and it's not an area I feel comfortable with - but my opinion doesn't make it not true. But I am not unwell.
Sorry Circ, I know this doesn't help you. But please don't worry yourself sick over the issue.

[SusanJ]

Circ, just remember overwhelmed is a tough place to be making decisions. Sending more hugs.

[mimik67]

Alysson and Circular

I look forward to our Skype chat, and of course we might summarize any of our take aways from our chat here for the benefit of others, as I agree it is important to continue the discussion in this forum.

Circular, interesting note about being able to smell mold in your neighborhood. You may be surprised to learn that many people who are not mold sensitive do not actually smell these smells. At all. Which is another red flag.

As for the expense. I totally get it. But so, so many people have chased diagnosis for years only to finally have it explained to them by a Shoemaker doctor and have a resolution and healing. We can look at your MRI order to see if the codes can be adjusted. Most insurance, including Medicare cover MRI for mild cognitive impairment. The NQ should not be much more. It is an unfortunate thing r spending so much on health care and not finding answers. I do think we owe it to ourselves to properly rule CIRS diagnosis and treatment in or out. The doctors can try to keep treatment costs down. The follow up appointments are not terribly expensive and the actual protocol is also very SIMPLE (I am on one over the counter medication right now and ONE binder and nothing else, for example)

For what it is worth, I just got off the phone with a Bredesen trained practitioner and she was VERY pleased that I was working with a CIRS doctor and says she has seen it do wonders to help people regain their cognitive abilities and health, and that she refers out for this all the time- to the appropriate trained doctor. In fact, I learned of Dr. Bredesen through a woman that had been treated by Dr. Bredesen, who then himself referred her to a CIRS doctor.

[circular]

Stavia thank you, that ishelpful. I respect your opinion. I found the CDC's page on this and some may find this link helpful. Although Shoemaker calls them the 'Center for Discussion' Crushing', even they broadly conclude:

Individuals with persistent symptoms should see their physician. However, if Stachybotrys chartarum (Stachybotrys atra) or other molds are found in a building, prudent practice recommends that they be removed.

I followed Mimi's advice and began reading some of the .pdf essays about the protocol written by the doctors who have certified with Dr. Shoemaker. I also listened to Kresser's first podcast with Dr. Shoemaker and am starting Kresser's second podcast with him. These are at least helping me to see better the thinking behind the protocol, even if I'm not really qualified to critique it. In the first part of the second podcast Kresser mentions those for whom the protocol doesn't work, and they go on to discuss the next wave for addressing CIRS which will involve much more in-depth genomics testing to identify which genes are being activated and what specific triggers each are correlated with. I'll have to take this all in and figure out ... If much more precise testing is coming, would it be a better investment to wait for that?

Alysson, in couple places now I've seen that apparently one can have MARCoNS without nasal symptoms, including in the podcast with Dr. Shoemaker.

Susan, you are so right ... No major decisions unless I'm climbed down from my highchair and I'm in a peaceful state of mind

[Julie G]

Stavia, I hear and understand your skepticism. Dr. Bredesen was in that same camp…initially. He was stunned when patient after patient presented positive for CIRS. This was an accidental, and potentially critical, finding. Don’t forget, Rudy Tanzi just demonstrated proof-of-concept that abeta is a protective response to a mycotoxin/virus/pathogen. This doesn’t mean CIRS is the cause of ALL Alzheimer’s, but it’s certainly a promising lead.

{{{Allyson & Circ}}} I hear you and would certainly feel the same if my markers weren’t overwhelmingly positive. I know your health journeys and have enormous compassion for all you’ve been through. With your equivocal markers, you just have to make an educated guess on how to proceed. How kind of Mimi to offer assistance. Please do share the gist of your meeting with us all.