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Possible CIRS?

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Posted 7/23/2018 1:44 AM (GMT 0)
I neee some help figuring this thing out & what better place to go then here.

So me & my girlfriend came o visit her mom & everytime I get in this house my brain fog gets much much worse. I tried leaving and although the fog didn’t completely lift as I’ve had this fog now for 2 years but it did get better.

I’ve had some problems with lighting on the inside of houses at times and when I have these problems it just seems like the lighting of the house messed with my vision just like driving in the dark messes with it.

When I leave this house and came back I tried seeing if it took a minute for the fog to appear or if it happened as soon as I walked it to maybe determine whether it’s mt vision or brain fog but its like seconds upon walking in the house.

Now I’ve been treating for 7 months with little improvement, does this mean I may also have a mold problem??

Also I must mention that whenever I became ill it was the 2nd day in my new apartment which I’ve moved away from.

I have Lyme symptoms and I guess they are kinda alike, the only thing I have aiding a Lyme diagnosis is band 23 igg. Which I guess it’s possible to have both y

But any help would be good and I’d appreciate it.
Posted 7/23/2018 2:46 AM (GMT 0)
Sounds like a strong possibility to me. Have you been tested for the "mold" gene? A quarter of the population has it. And it is usually these people who cannot reach remission while treating lyme. I am one of these people.

I think it's great that you are observing this connection now. I would strongly recommend getting tested for the HLA gene. And if you are mold susceptible, you will be able to do the proper protocols to get you well.

It would make perfect sense that you had lyme that was being kept in check until your body became overloaded once you moved into a moldy apartment.

Possibly... it's worth investigating.

Good luck.
Posted 7/23/2018 3:54 AM (GMT 0)
Hoagie - to get tested for the HLA gene - do you have to test with 23andme?
Or can your regular Dr just give you a lab req?
Posted 7/23/2018 4:17 AM (GMT 0)
Hoagie no I have not been tested for it.

My C4a was high which I’ve read could be from mold.

I took that disgusting binder for a couple weeks & didn’t notice any difference.
Posted 7/23/2018 10:36 AM (GMT 0)

Girlie said...
Hoagie - to get tested for the HLA gene - do you have to test with 23andme?
Or can your regular Dr just give you a lab req?

My LLMD ordered the test through labcorp.
Posted 7/23/2018 10:43 AM (GMT 0)

BBN!! said...
Hoagie no I have not been tested for it.

My C4a was high which I’ve read could be from mold.

I took that disgusting binder for a couple weeks & didn’t notice any difference.

If you are taking a binder such as cholestyramine while still being exposed to mold, you will get worse. If you have CIRS, it is imperative that you get you living quarters (I recommend your work space as well) tested with either an ERMI or HERTSMI-2 test through Mycometrics. If these come back with acceptable level then you should start a binder. Also get a test for MARCONS.

I recommend you seek out a Shoemaker certified CIRS doc if you have the gene. Have your LLMD order you the test.
Posted 7/23/2018 5:25 PM (GMT 0)
Hey Hoagie - I hadn't heard that about binders making things worse if you're still being exposed to mold. Do you know why that is the case? Thanks! MM
Posted 7/23/2018 6:20 PM (GMT 0)

Mister Mike said...
Hey Hoagie - I hadn't heard that about binders making things worse if you're still being exposed to mold. Do you know why that is the case? Thanks! MM

If you go to survivingmold.com it can explain it better than I can. But, essentially, you are making room in the bloodstream for more toxins to separate from the organs and move into the bloodstream to be ready for carry out by the next dose of cholestyramine. But if you are still taking in toxins while you are mobilizing toxins out of fatty tissue, you are creating an endless cytokine storm while never getting the toxic load down.

Even after removing a lyme patient from exposure of mold, CSM can still be problematic and should be used with caution. A CIRS patient who does not have lyme or MARCONS should start getting better fairly quickly once removed from the source and the use of CSM. But lyme and coinfections will continue to release toxins, so CSM has to be used cautiously. But it is essential to use CSM, or an alternative binder (CSM is supposed to be the best binder by a wide margin) when you have CIRS. Or else all you are doing is recycling toxins creating neverending inflammation.
Posted 7/23/2018 6:34 PM (GMT 0)
Thanks so much Hoagie. I am on Welchol as I am aggressively fighting a rarer co-infection (Q Fever) so CSM is very difficult for me to take from a time perspective, but since I've been on binders (it was charcoal at first) I was re-exposed to mold and continue to get worse. Would you recommend stopping the binder until I was stop the re-exposure?
Posted 7/23/2018 7:58 PM (GMT 0)

Mister Mike said...
Thanks so much Hoagie. I am on Welchol as I am aggressively fighting a rarer co-infection (Q Fever) so CSM is very difficult for me to take from a time perspective, but since I've been on binders (it was charcoal at first) I was re-exposed to mold and continue to get worse. Would you recommend stopping the binder until I was stop the re-exposure?

This what I have read. I even read of a doctor not giving a prescription binder to a patient until they came in with a passing ERMI score for their home. Apparently, it's pretty important. If you stop the binders, you symptoms should slow down some even though you are still being exposed.

We are looking for a rental and are still in our house. I decided to stay in a tent in our backyard until we move so I could start the csm and get the ball rolling. Ended up being a mistake. I found myself going into the house too much for this and that and getting too much exposure. I ended up losing my gains and started getting migraines again that I hadn't gotten in nearly a year.

So I have stopped csm until I move out and get the new place tested.
Posted 7/23/2018 8:10 PM (GMT 0)
Very interesting - thanks again Hoagie. I may stop the Welchol and see how I feel. While the initial re-exposure happened at work, I now get sinus and ear pressure/swelling/stuffiness at home and in my car so I'm probably getting it from multiple sources.
Posted 7/23/2018 8:21 PM (GMT 0)
I have a msh score of 11, elevated C4a, & low VEGF. All of which I’ve read corresponded with CIRS. I’m gonna talk to my doctor about testing for that gene but by what I have so far in bloodwork would you say that’s about a guaranteed bet I have It? & Lyme
Posted 7/23/2018 11:00 PM (GMT 0)
BBN!! - based on those alone I wouldn't say definitely CIRS,but those along with although your reaction to a specific house speaks volumes to me. Other classic CIRS symptoms are frequent urination, often thirsty and full of static electricity.

Great Plains Labs offers a urine test that will determine which mycotoxins you may have in you, which was incredibly helpful to me, and the GPL test is $299 a lot cheaper than the Real Time Lab test which is $799.

If that isn't an option Ritchie Shoemaker uses other tests ....here's a link to his site: https://www.survivingmold.com/diagnosis/lab-tests
Posted 7/23/2018 11:16 PM (GMT 0)
Yeah, the frequent urination is due to mycotoxin damage to the hypothalamus. It causes a low production of antidiuertic hormone (ADH). This is the hormone that tells your kidneys how long to hold on to water.

This, from my own speculation, is what has caused my recent migraines. I have suffered with them since I was a teen. Dehydration and stress is its trigger. What I figured is while I was taking the CSM while being exposed, it caused more toxins and inflammation in my hypothalamus region and I noticed that I would be getting up to pee 3-4 times a night. And the next day I would get a migraine.

Mold toxicity causes very low ADH.
Posted 7/24/2018 12:40 AM (GMT 0)
Frequent urination is actually one of my symptoms! A road trip for me is awfullll!!
Posted 7/24/2018 12:49 PM (GMT 0)
Hoagie - I reached out to my doc after initially reading your comment about binders. This is what the MA sent me:

"As for the binders causing you to feel worse, can be true due to the fact that we are mobilizing toxins that before your body wasn't wanting them to circulate. If you are having worsening of symptoms while on the binder, you can cut down on the amount taken each day, but continue to take it each day so that you keep your detox pathways open."

Curious as to your take on this.

BBN!! - yeah I grew up in a moldy house and twenty years before I started getting major symptoms four years ago I also had to urinate all the time. I would definitely continue to ask your doc about CIRS/mold. Does your doc treat it?
Posted 7/24/2018 1:22 PM (GMT 0)

Mister Mike said...
Hoagie - I reached out to my doc after initially reading your comment about binders. This is what the MA sent me:

"As for the binders causing you to feel worse, can be true due to the fact that we are mobilizing toxins that before your body wasn't wanting them to circulate. If you are having worsening of symptoms while on the binder, you can cut down on the amount taken each day, but continue to take it each day so that you keep your detox pathways open."

Curious as to your take on this.

BBN!! - yeah I grew up in a moldy house and twenty years before I started getting major symptoms four years ago I also had to urinate all the time. I would definitely continue to ask your doc about CIRS/mold. Does your doc treat it?

Hi Mike...

When you have time, please watch this interview with Dr Berndtson. He is a Shoemaker certified physician. He is one of the top CIRS doctors in the country. I was fortunate to see him before he got sick and had to go on med leave last month. I think he is still dealing with a Bartonella infection. But that's just speculation on my part.

/www.google.com/url?sa=t&source=web&rct=j&url=https://m.youtube.com/watch%3Fv%3DtuXjpfeosps&ved=0ahUKEwie_dGW6LfcAhWB7VMKHaMdDkcQtwIIIzAC&usg=AOvVaw3a7QqpunEsoTVIaGZoQVij
Posted 7/24/2018 1:25 PM (GMT 0)
Thanks Hoagie. That link doesn't seem to work. Could you please repost?
Posted 7/24/2018 7:41 PM (GMT 0)

Mister Mike said...
Thanks Hoagie. That link doesn't seem to work. Could you please repost?

should work now.

I just did a little more research and found not everyone agrees with Berndtson. However, if you are taking a powerful bainder such as cholestyramine and you are still in a moldy environment, progress will be very slow if at all.
Posted 7/24/2018 7:45 PM (GMT 0)
Hoagie; yes she does treat it. I’m gonna look further into for sure. Last night I stayed up all night long doing research on it & I’m pretty convinced I may have it. I’m gonna call my insurance to see if they cover that gene test.

I pray that I don’t actually have Lyme & it’s just this mold problem.
Posted 7/28/2018 8:38 PM (GMT 0)
For some reason I still can't see that. What's the name of the video on Youtube Hoagie?
Posted 7/29/2018 2:03 AM (GMT 0)

Mister Mike said...
Very interesting - thanks again Hoagie. I may stop the Welchol and see how I feel. While the initial re-exposure happened at work, I now get sinus and ear pressure/swelling/stuffiness at home and in my car so I'm probably getting it from multiple sources.

Do you think you could have MARCONS?
Posted 7/29/2018 7:06 PM (GMT 0)
Its possible, although I had MARCoNS before and successfully treated it. Also, when I had MARCoNS before I never had this symptom...

Stopped the Welchol and if anything I feel worse. So will restart and see how I feel...
Posted 7/29/2018 7:21 PM (GMT 0)

Mister Mike said...
For some reason I still can't see that. What's the name of the video on Youtube Hoagie?

Search youtube for Dr Keith Berndtson. The name of the video is, Mold Toxins Making You Fatigued & Sick?
Posted 7/29/2018 9:13 PM (GMT 0)
Perfect! Thanks.
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