Low cortisol but XMRV activated via mold and Lyme toxins

[Kathi]

I, too, am a moldie. My first exposure was from 1983-1992.( Prior to that time, I had no health issues. ) At the time I was in 4 buildings, but only one sent me into symptoms. Over the course of time, I had to have ceiling tiles removed, have the mold cleaned up, leave the room for a closet with no ventilation system , visit various doctors, get on a mold-yeast free diet, take medications, change my life style and recover from a twin -twin transfusion pregnancy that nearly killed me while in that building. I was functional until 2003 when I worked in the basement of another building. Silly me..........the water marks on the wall must have had hidden mold and once again I went on a spiraling decline over the course of several years. I never realized that the mold in the wall could be there and affect me. The only way I realized this , the teacher that followed me got sick too in that room. We were both sensitive to molds from the first building. By the time I left, I couldn't even walk. I visited the F&F Centers and they caused a heart attack. Went on disability. Started to recover again and then had a mold slam in my bedroom this past March from a leak that started on a Friday and had a miniature patch from black mold by Sunday. The black mold formed and I immediately got sick within 48 hours of the rain starting the leak. By Sunday morning I was terribly ill and poisoned from the black mold. All the progress I made has evaporated. I have good days, but must be extremely careful or else I get extreme post exertional malaise. I am a severe reactor now. I still feel poisoned from only being around that miniature sized black mold on the wood for a few hours. Does that tell you how powerful mold is and how debilitating it can be???? Lisa and Erik know what they are talking about and have an abundance of expert advice.

 

[SunnyGal]

Hi Lisa,

One of the sources that links NF-kappaB to activation of XMRV is Dr. Cheney:

http://www.cheneyresearch.com/topic/adhd

"We already know that activating NF-kB activates this virus and suppressing NF-kB inhibits XMRV."

I think Dr. M also mentioned NF-kappaB in one of her talks, but I was very foggy at the time (thanks to mold) and couldn't tell you where I saw that.

Yes, of course the herx from using Thieves the first time is due to the spores that are released. It seems with continued use of Thieves the herx doesn't happen after the first couple of times (worst the first time). Does this correlate with your knowledge about mold, Lisa?

Sunny

 

[slayadragon]

Dr. Cheney recently has mentioned that CFS sufferers can be "mold canaries," but he seems to think that this is equivalent to their relapsing after moving into a particularly moldy house. The facts that people can be really reactive to the tiny amounts of mold that we've been discussing on this thread, and that remissions can be achieved systematically solely by avoiding mold (with wellness continuing if and only mold continues to be successfully avoided), is something that he seems yet to understand.

Making him and other CFS researchers aware of these things so that they will start looking into them is my main goal at this point.

Sunny, it does sound like your experience with the Thieves Oil is consistent with the idea that it dried out the colony, causing a lot of spores to be released all at once. Insofar as you found it to be helpful over the long run, I'm glad.

I STRONGLY urge other people with CFS not to follow this approach though. Many CFS sufferers are already living at the edge of their tolerance level with regard to the mold, and so any increase in exposure might well push them over the edge into even more serious long-term disability.

I've seen this happen several times as people have tried various ways (including ways they thought should be "safe") to address mold problems themselves. This has included deaths from heart attacks, strokes, and descent from "moderate" CFS to months of being bedridden.

Because the toxic effects of mold are cumulative (especially for those with the mold susceptible or multi susceptible genotypes), recovery from large exposures back to previous levels of CFS may never occur. Insofar as the mold causes people to acquire new infections or activates latent pathogens, this may affect their long-term health as well.

Note how Kathi was affected by the tiny amount of mold in her bedroom, for instance. She has yet to recover wholly from that exposure even though it was brief and she addressed it in appropriate ways.

Sunny, it sounds like in your residence, there was a small amount of mold that was killed by the Thieves Oil, and that your body was able to recover from the increased exposure. In a home with a larger mold problem, a bigger exacerbation (I wouldn't exactly call it a "herx") would be something that many CFS sufferers never would recover from. And since mold problems tend to be really hidden, it's impossible to know how bad they are without digging into walls.

My fear and (frankly) guilt over what very frequently happens when CFSers start trying to address mold problems themselves almost makes me not want to talk about this issue with them at all.

I thus implore (please, please, please) CFSers to acquire professional help to address any mold problems they have. These professionals should address the mold by sealing off the area to be addressed with plastic and then carefully removing it under Hazardous Materials protocols. CFS sufferers should be nowhere near while this process is occurring.

Thank you all for attending to this information.

Best, Lisa

 

[Kathi]

After I first had the heart attack, the sore throats that I experienced prior to the MI ( or kept at bay with large amounts of vitamin C) were a thing of the past. I tried to recount what the common denominator might be. I explained to Dr. Cheney ,at my first appointment on March 2009, the only thing that I could determine that was different was the heparin that I received during the heart procedure. ( catherization) Knowing that it is a vital component for many people, I concluded that it was the differentiating factor that lent itself to helping me. I had been taking the shots on a periodic basis as needed to keep the NK Kappa B at a minimum after the MI. Prior to the mold slam, that I received in March in my home, I was able to quit the shots. Now I am back on them in addition to daily B-12 shots that I only needed to take sporadically. So the mold obviously started a spiral of factors that were relatively calmed prior to the mold slam. Most likely the NF Kappa B has spiraled out of control and the control procedures that I was using previously need to be stepped up and modified. I am working on this as we speak.
I also need to stay away from my shade/ flower garden as the mold in the dirt is affecting me. Being a severe reactor is difficult. Perhaps if I wore a mask while in the garden( looking like
a weirdo) maybe that would protect me while doing what I passionately love to do. I guess you have to do what you have to do.

Kathi

 

[SunnyGal]

Lisa,

Sunny, it does sound like your experience with the Thieves Oil is consistent with the idea that it dried out the colony, causing a lot of spores to be released all at once. Insofar as you found it to be helpful over the long run, I'm glad.

I STRONGLY urge other people with CFS not to follow this approach though. Many CFS sufferers are already living at the edge of their tolerance level with regard to the mold, and so any increase in exposure might well push them over the edge into even more serious long-term disability.

I COMPLETELY agree with you. I am under going an extremely complex, thorough treatment with an extremely knowledgable, competent doctor, and using Thieves oil to treat mold in my house is part of that very complex treatment. I absolutely do NOT recommend that anyone attempt any kind of mold treatment on their own. I have known for many years that I had mold in my house and that I have some issues with mold (less severe than some, fortunately) but I absolutely did not try to address it on my own until I found a competent doctor to help me with it. I know too many people who attempted to clean mold themselves and became deathly ill.

Thanks you for addressing this so clear on this thread. I would hate to see anyone cause themselves serious harm by attempting to clean up mold themselves.

Sunny

 

[SunnyGal]

I know that mold and mold treatment is a very huge issue for many with CFS and that it needs to be taken very, very seriously. I appreciate the posts here to help educate others about this so that they don't harm themselves. However, that's not the original topic of this thread and I am sure there are many other posts on these forums that discuss mold specifics in detail. I don't want to see this thread taken over with discussions about mold specifics. I'd like to keep the discussion on the original topic, the fact that mold and Lyme toxins cause an increase in NF-kappaB which appears to be one of the things that activates XMRV. Maybe I should have only referred to Lyme toxins causing an increase in NF-kappaB which activates XMRV. :Retro wink:

I started this thread in the hopes that others with more brain power than I currently have might be able to add more to these thoughts about the interplay between toxins that increase NF-kappaB and XMRV activation. I'm still hoping some of the brain-e-acks here will chime in on the topic.

Sunny

 

[slayadragon]

>I started this thread in the hopes that others with more brain power than I currently have might be able to add more to these thoughts about the interplay between toxins that increase NF-kappaB and XMRV activation.

I also would be absolutely thrilled to see that happen.

In addition, I put some related information on this thread:

http://www.forums.aboutmecfs.org/co...ain-A-Breakthrough-for-ME-CFS&page=2#comments

Hopefully we'll get some educated comments there as well.

Lisa

 

[SunnyGal]

Thanks, Lisa. I hope we get some comments on your posts on Cort's article or here. It's a shame that topics related to mold seem to be skirted by so many. I was hoping that this XMRV angle on it might attract some discussion. Well, we'll see.

Sunny