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ISEAI 2019 Inaugural Conference Notes

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Posted 5/28/2019 9:00 PM (GMT 0)
k07 posted a link on another thread. Wanted to put this out there for all to see.

ISEAI - International Society for Environmentally Acquired Illness

Chances are, you’re doctor is a member or trying to become one.

Better Health Guy posted his notes yesterday from the inaugural conference held earlier this month. Here’s the link: http://www.betterhealthguy.com/iseai2019?fbclid=iwar3lyi-i37v20cbyqegrlzko9pza0dxeeicecxmdrxbxeo6e9l7txmr11qo

I have read through the notes and noticed some changes to previous beliefs:
- treating MARCONS may not be necessary
- BEG spray no longer used
- pharmacies can no longer compound silver; (don’t know if this will affect OTC silver or not)
- MCAS and DNRS types of treatment seems to be at the forefront of topics now
- differing opinions on the significance of HLA-DR genetic susceptibility
- a lot more mention of specific herbals and what they are used for (ex. CSA formula for MARCONS - hadn’t heard this before)

Drum beat:
A number of speakers hit on dealing with mold exposure as a first priority. (From personal experience, this can be the most difficult to deal with and effectively accomplish.)

Post Edited (WalkingbyFaith) : 5/28/2019 3:16:47 PM (GMT-6)

Posted 5/29/2019 1:16 AM (GMT 0)
Thanks for posting this! I was jazzed to read these notes. My LLMD was at this conference and was particularly impressed with Annie Hopper's presentation about DNRS. I've been on a real Neil Nathan kick lately, and also doing DNRS with good results, so it's good to read the perspectives of so many other big names in relation to those two practitioners. This is a great link to send to people, as it contains the lists of mycotoxin illness markers tests and the chart for which binders bind which mycotoxins, and other great resources for people with CIRS and other complex illnesses.
Posted 5/29/2019 2:52 AM (GMT 0)
Sara,

Question for you:

In the conference notes, Neil Nathan reported in regards to mold that “10% of his patients improved with binders and environmental avoidance. 90% required addressing colonization to improve.”

My doctors have not discussed mold colonization. Did you learn anything from his book about mold colonizing in the body? How is this diagnosed? How treated?
Posted 5/29/2019 12:51 PM (GMT 0)

saraeli said...
Thanks for posting this! I was jazzed to read these notes. My LLMD was at this conference and was particularly impressed with Annie Hopper's presentation about DNRS. I've been on a real Neil Nathan kick lately, and also doing DNRS with good results, so it's good to read the perspectives of so many other big names in relation to those two practitioners. This is a great link to send to people, as it contains the lists of mycotoxin illness markers tests and the chart for which binders bind which mycotoxins, and other great resources for people with CIRS and other complex illnesses.

So you're doing DNRS? I couldn't get past the first few days. There's all the those steps where you have to go through and I had to keep going back to the notes. Are you finding that hard? Any tricks? My memory is not good, the harder I try to remember stuff the more frustrated I get. I also found it a little goofy and annoying getting through all the talking stuff. I want to cut to the chase!

I probably need to set a date and commit to it.
Posted 5/29/2019 1:04 PM (GMT 0)
In Toxic he only mentions colonization by name once (pg. 54), with regard to MARCoNS. He makes a distinction between infection and colonization, and says that colonization by definition does not cause symptoms by itself, technically, but it can increase endotoxin exposure, destroy red blood cells, and cause more inflammation. He emphasizes the Brewer protocol (with modifications) to kill whatever is colonizing the sinuses (nasal sprays) and then the GI tract (oral antifungals), starting both only after the patient is doing well with avoiding exposure and tolerating significant doses of binders. "No worsening or exacerbation of symptoms is acceptable" (p. 75). Customized based on patient sensitivities, the nasal decolonizing agent options he discusses are amphotericin B, EDTA, nystatin, ketoconazole, itraconazole, hydrosol silver (Argentyn 23), and BEG (with or without the gentamicin). The oral antifungals are Argentyn 23, itraconazole, nystatin, NAC, InterFase Plus, and MC-BFM from Beyond Balance.

Also interesting: Mold bound to bile acids are eliminated well by certain vegetables (cauliflower, asparagus, beets, okra, etc.) (p. 78).

I do not recall whether he recommends testing for colonization, or if it's just something we can assume we have?

Sometime I will start a thread about doing these steps, and if people have had success with essential oils, herbs, and other alternatives to his suggestions.
Posted 5/29/2019 1:12 PM (GMT 0)
I also was surprised to see this comment: If you have an HLA for Lyme, you can't clear Lyme when you are killing and need binders during treatment.

I do have the Lyme HLA gene and there is little talk about it. Docs seem to mostly focus on the mold gene. If I take just one antibiotic capsule I get urinary symptoms (frequency, mild pain) as well as insomnia. I don't think this is a classic "herx" as it happens immediately and doesn't get better. Dr. H never stressed binders - he did a lot of detox support though. Lately I was thinking maybe those symptoms I get were more of an MCAS reaction to antibiotic, but now I'm back to wondering if I just need more binders on board. I've taken MCP, charcoal and now chorophyl. The MCP did help me sleep better but after a year or so wasn't working so well. Which binder do you think would be the best for the Lyme HLA gene? Zeolite? Clay? Haven't tried either of those. And whenever I've taken binders it was only once a day, which maybe isn't enough.

WBF - I think you have the lyme gene? I wonder if there's a pattern of those with it and not being able to take abx. Possibly because we need binders like 3x a day? Maybe the reason we can tolerate herbals slightly better is because they don't kill as quickly as antibiotics.
Posted 5/29/2019 2:13 PM (GMT 0)

k07 said...
I also was surprised to see this comment: If you have an HLA for Lyme, you can't clear Lyme when you are killing and need binders during treatment.

I do have the Lyme HLA gene and there is little talk about it. Docs seem to mostly focus on the mold gene. If I take just one antibiotic capsule I get urinary symptoms (frequency, mild pain) as well as insomnia. I don't think this is a classic "herx" as it happens immediately and doesn't get better. Dr. H never stressed binders - he did a lot of detox support though. Lately I was thinking maybe those symptoms I get were more of an MCAS reaction to antibiotic, but now I'm back to wondering if I just need more binders on board. I've taken MCP, charcoal and now chorophyl. The MCP did help me sleep better but after a year or so wasn't working so well. Which binder do you think would be the best for the Lyme HLA gene? Zeolite? Clay? Haven't tried either of those. And whenever I've taken binders it was only once a day, which maybe isn't enough.

WBF - I think you have the lyme gene? I wonder if there's a pattern of those with it and not being able to take abx. Possibly because we need binders like 3x a day? Maybe the reason we can tolerate herbals slightly better is because they don't kill as quickly as antibiotics.

Yeah, I noticed that comment, too. I wonder if the Canadian lady from that documentary who was so severe and didn’t recover until she took Cholestyramine had one of the genes.

I have the Lyme gene and a multi susceptible gene. I think the multi susceptible people have the hardest time in general if the gene is activated.

Shoemaker never identified a gene for babesia although he does seem to acknowledge that babesia produces some type of toxin.

I was more surprised by the comments some made insinuating the HLA-DR gene types are of little consequence. Maybe it all depends on whether or not the genes are activated. I don’t think many practitioners are doing genomics testing. Then again if people have these chronic illnesses you would kind of assume those genes are activated.

Binders: I had some success with Zeobind initially but after a week or two started getting worse. Never was able to figure out if I was moving too much toxins or if it was from some bad mold exposure that occurred around the same time.

I have been doing worse for a couple weeks now and feel I am spiraling downward again. Still don’t know why. Mold exposure taking me down? Delayed detox herx from Zeobind and/or phospholipids in my new milk thistle? Parasite die off or push back from almost 2 months of low, slow herbal treatment?
Posted 5/29/2019 2:19 PM (GMT 0)
DNRS -
I noticed a lot of mentions in the notes about this. I am still very leary, though, for personal reasons. I feel I would benefit much more from some type of Bible based method of renewing my mind but don’t know how to go about it in a structured way, especially since I struggle with memory, focus, OCD/ADD.

Is there a general method of how this works that can be substituted with other means? It’s hard for me to wrap my head around exactly what this DNRS is.
Posted 5/29/2019 8:18 PM (GMT 0)
I love talking about DNRS! I'd be happy to share more, WBF, if you want to connect by email one day.

There is nothing in DNRS that conflicts with any religious tradition, and it's designed to be non-denominational, according to the FAQs. In fact, I think people with a strong prayer practice and spiritual connection might have an easier time with it than others do. The program encourages people to incorporate their religious beliefs, and I think folks with a Christian background might have an especially seamless integration of principles - trusting in a higher power, prayer, a sense of spiritual connection, focusing on the positive and gratitude, forgiveness, faith, etc.

The practice of DNRS involves changes to your mindset, like being mindful of keeping your attention on positive things, and doing a set of practice steps every day for an hour. The steps involve easy hand motions and saying a series of statements (that you can and should personalize) followed by some visualization (also completely individualized). They help you to connect to pleasant memories and a pleasant vision of the future, which engages your limbic system in re-wiring itself. The idea is that we cement neurological pathways in our brains with emotion - fear and joy being equally powerful - and chronic illness and the fear and frustration that surround it cement the pathways that perpetuate symptoms. So DNRS aims to cement better pathways using positive emotions, the more spiritual the better! Basically using emotions and words to re-structure the brain itself. People use these principles in stroke recovery and other sorts of brain injury treatment. It's not complicated, but it is powerful.

If you struggle with concentration, then you might have a little more trouble with that in the first week or two, as the brain fights back against being rewired! It's pretty bananas, but also makes total sense if you have looked into the idea of neuroplasticity.

I was suspicious of this because it seemed hokey to me, and vaguely offensive and infantilizing, as though it was some sort of positive thinking course, implying that Lyme can be cured with a better attitude. It is more than that!

If you are not comfortable trying it, then maybe it's not right for you, but having been through it and talked with other DNRS users, I don't know any Christian people who have found it to be in conflict with their beliefs, for what that's worth. My biggest criticisms of it are that it feels dated, the camera work and set is low-quality, the website and web interface are outdated and not organized well, and the examples used are overwhelmingly about multiple chemical sensitivities (even though she makes clear the program applies to many other conditions).

If you want to learn more about neuroplasticity, then check out the book The Brain that Changes Itself by Norman Doidge. Maybe you could familiarize yourself with the underlying principles that way and then figure out a more explicitly religious version for yourself? I'm sure it could be done.
Posted 5/29/2019 8:27 PM (GMT 0)
k07 - Sorry, just now seeing your DNRS post about tips. I do have a few!

First, from what I gather, it's normal to have trouble sticking with it at first. Odd as it seems, your brain really is fighting against being rewired. It will try to distract you, depress you, make you tired, etc. so you will leave it alone. But stick with it even if you don't genuinely feel everything you are saying for a week or two.

I think my best tip is to write down notes and hang them on the wall someplace in your house, so you can have all the reminders easily accessible. I made lists of quotes and tips from the program, and also lists of my own, like things to elevate my mood and a list of positive memories rich in sensory details. When I have a scary new symptom or a busy day, it can be really helpful to stop and read over the things I have on my wall. (I bet my room looks a little nuts....) I found the steps themselves easier to remember once I re-worded them to make them feel more natural for me.

Can't disagree with you about the goofiness. I found that as well but pushed through.
Posted 5/29/2019 9:30 PM (GMT 0)
Sara,

Thank you for that information!
Posted 5/29/2019 10:42 PM (GMT 0)
You’ve given me the motivation to try again, Sara! I’m going to get up early and put in the time. Thank you!
Posted 5/29/2019 10:54 PM (GMT 0)
Obviously I'm not a perfect DNRS devotee, as I spend a lot of time on this forum talking about Lyme disease.... (One tenet of the program is that you strengthen pathways by focusing on them, so for six months you're supposed to avoid talking and reading about illness and symptoms as much as possible, and practice DNRS after, say, filling out medical forms.)

Let me know how it goes, k07!
Posted 5/30/2019 7:46 PM (GMT 0)
I wanted to point out an interesting comment by Dr H:

- “GI Dysbiosis - 22% had Candida, 18% parasites. Babesia impairs ability to clear other parasites; will see rope worms over and over.”

I was kind of surprised to see him mention rope worm. That was the only mention I saw. Since I have been on the forum, I think I’m the only one who has mentioned it. I got the impression it was less common than Morgellon’s. I wish there was more helpful information about it.

Question: what is CDR?

- “Mitochondrial Dysfunction - reason not responding is probably in early CDR state.“
Posted 5/31/2019 12:14 PM (GMT 0)
Bumping for feedback/answers to my last comments.
Posted 5/31/2019 1:07 PM (GMT 0)

WalkingbyFaith said...
I wanted to point out an interesting comment by Dr H:

- “GI Dysbiosis - 22% had Candida, 18% parasites. Babesia impairs ability to clear other parasites; will see rope worms over and over.”

I was kind of surprised to see him mention rope worm. That was the only mention I saw. Since I have been on the forum, I think I’m the only one who has mentioned it. I got the impression it was less common than Morgellon’s. I wish there was more helpful information about it.

Question: what is CDR?

- “Mitochondrial Dysfunction - reason not responding is probably in early CDR state.“

CDR - Cell Danger Response. See the work of Robert Naviaux. I've posted some about it in the past. Basically for whatever reason (virus, vaccine, bacteria, parasite, environmental, etc), the stress response (CDR) may go into overdrive and not turn off. Naviaux used the drug, Suramin, which blocks receptors in the stress response and can potentially restore the cell’s equilibrium. I read some of the parents accounts of how the children responded and it was pretty amazing.

There's a retrovirus summit coming up that will talk a lot about CDR, I imagine. Starts July 1. You can listen to three talks already that were released early. I've listened to two of them. Unimpressed with the parasite talk. I get leary whenever doctors are selling a product. Although I do think Mimosa Pudica did some strange stuff to me.

Parasites have been on my mind a lot lately, for various reasons. I'm not sure if herbals are enough to clear them if in fact they are an issue for me like I think they may be. I've did a few humaworm cleanses and some pharma drugs (biltricide, alinia). I'd really like to work with a doctor on this. Still waiting on that...
Posted 5/31/2019 1:36 PM (GMT 0)
k07,

Thank you. I remember you talking about CDR now. From what Dr. Naviaux said on those notes sounds like Suramin is not a legal option for many. That’s too bad.

Mimosa pudica definitely has an affect on me and brought out babesia type symptoms that I wasn’t having before. Definitely promotes removal of rope worm. If I interpret Dr. H’s statement right, sounds like he’s saying as long as you have babesia, you’ll keep on having the rope worms.

When will you see Dr. O?
Posted 5/31/2019 1:55 PM (GMT 0)
I'm not sure about Dr. H's comments. I did see him, but he never strongly suspected babesia for me. I did a short cycle of parasite drugs with him. I'm sure not enough to clear anything because we only did it once.

I think that the point of Naviaux's trial was not so much about the drug, but the mechanism of action behind autism and various other chronic illnesses. Hopefully they can find a way to correct the CDR without having to take a drug long term. Perhaps this is how DNRS works for some?

I'm still waiting on Dr. O office to contact me for an appointment. I emailed again last month and asked if they thought it would be this summer and was told yes.

From what I understand, mimosa pudica does not actually kill anything. It expands and kinda pushes things through, right?
Posted 5/31/2019 2:09 PM (GMT 0)
k07,

Wow! I didn’t realize Dr. O was so hard to get an appointment with. I was thinking you had an appointment set for last December. I wonder if that means he’s that sought after, that strict as to how many patients he will take on, or if it indicates how many people in GA and the southeast have CIRS, mold, Lyme.

Yeah, my doctor described mimosa as a gut scrubber. I suspect it does more than that. It’s a plant medicine. Most plants seem to do multiple things and many have some type of antimicrobial effect.

It brought out some strong symptoms for me as the weeks went on. After 5 weeks I had to stop because I was having too much psych symptoms and body pain. It could be that it breaks open biofilm, essentially releasing whatever’s in the biofilm. There were times prior to large gut expulsions (before Mimosa) where it felt like my intestines were being shredded.
Posted 5/31/2019 4:41 PM (GMT 0)
I am late to the party, VERY interesting, thanks for sharing!
I wish I had more time right now to thoroughly go through this, but I will.
I watched better health guy's interview with dr Nathan maybe two weeks ago, and there I heard, much to my surprise, that MACoNS in no longer being treated (after I just tested for it).
It;s a very interesting interview. https://www.youtube.com/watch?v=ia-xy2zjixc&t=4803s

He talks about marcons (58.min)
MCAS (1h13)

WBF, he also talks about colonization (52.min), refers to dr Brewer's research. My llnd prescribes A-FNG by Byron White for mold in the body.
https://www.gordonmedical.com/a-fng-part-two-chronic-mold-infections-and-lyme-disease/

For sinuses I tried different things, inhalation, neti pot, the other day at the dentist's I had an ozone insufflation. I don't know what effects it had, I had a mild headache the next day, but nothing too serious, sometimes I'd get headaches that were way worse from the sauna. I am sceptical not about the ozone itself, on the contrary, they say for example that it kills even the bacteria that forms biofilm, but about the way it can be administered, you hold your breath, and the nurse puts a syringe into your nostril and releases a small amount of ozone. It smells sweet and fresh, like when you open a window in a stuffy room after it has rained outside. Then you exhale through the nose, in order for the ozone not to go into the lungs but I think it's impossible to avoid this, as you have to take a deep breath again, hold it, and the ozone is administered to the other nostril, and so on, until the syringe is empty. My lungs did hurt a little after this, so I wouldn't repeat this.
I am a firm believer that many many symptoms and problems will disappear once a person is out of the moldy environment, but really out of the moldy environment, without moldy possessions etc. I was mold free for almost 5 months, and now I am back in my house, and things are deteriorating quickly. The difference of how I felt just two weeks ago and now is unbelievable. There is this sense of doom and desperation beyond desperation that mold can somehow inflict on you, not to talk about physical symptoms.

I see he mentions tooth deterioration in the notes, I read a lot about that, mold causes the teeth to rot around gums, I also read about rotting from the root, and yes, now that I am back in the moldy house I get sensitivity again, tingling in the gums, etc etc many things that had started to clam down after a few months out of mold, how can a biological dentist that claims to have seen many chronically ill patients not know anything about this is beyond me. I don't believe my issues are due to night grinding, that is, grinding could also be due to mold. All of my conclusions are purely instinctive, or based on experience.

Post Edited (Zimica) : 5/31/2019 1:30:10 PM (GMT-6)

Posted 5/31/2019 5:14 PM (GMT 0)
Here's another good resource on CDR. She links it with MCAS. I like her explanation and it fits with my experience. I'd like to know more about what CDR markers she sees on the OAT test.

https://alisonvickery.com.au/cell-danger-response/
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