Mold or Oxygen? Feel better in Hawaii
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slayadragon
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Folks who are interested in mold may want to read this thread. It's quite long, but it has a lot of good information. Eventually I will compile some of it all in one place, but I don't really have time to repeat it all.
http://forums.phoenixrising.me/showthread.php?4627-Mold-Dr.-Cheney-and-ME-CFS
Here is a board that is designed to allow people to share their experiences in different locations, regardless of what causes them. I encourage everyone who thinks that they have felt better or worse by going to different places to share their comments here.
http://locationseffect.proboards.com/index.cgi?
I also suggest reading the compilation of Erik Johnson's writings that I put together. Erik's story is discussed on the thread I mention above.
If folks want the ebook, please write to me and I will send it to you.
Best,
Lisa Petrison
lisapetrison at yahoo
http://forums.phoenixrising.me/showthread.php?4627-Mold-Dr.-Cheney-and-ME-CFS
Here is a board that is designed to allow people to share their experiences in different locations, regardless of what causes them. I encourage everyone who thinks that they have felt better or worse by going to different places to share their comments here.
http://locationseffect.proboards.com/index.cgi?
I also suggest reading the compilation of Erik Johnson's writings that I put together. Erik's story is discussed on the thread I mention above.
If folks want the ebook, please write to me and I will send it to you.
Best,
Lisa Petrison
lisapetrison at yahoo
PokerPlayer
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Did first hbot session today at 1.3 atm and pure oxygen.
It was a lot different than I thought it would be. The pure oxygen did not feel satiating at all. In fact, it made me feel somewhat short of breath..... so weird.
Right now I feel more brain fogged, tired, and low mood than before, very much so. My brain actually feels like it is in pain and swelling at the moment.
I know that it usually takes up to 40 treatments to do what it is supposed to do, so I am not going to just abandon it now, but I certainly do not want to do anything that will deteriorate my health.
Was definitely different than hawaii. Hawaii air felt relaxing and fulfilling and brain clearing. This pure oxygen felt stimulating almost ......
Right now I still kind of have that feeling like I'm not getting satiated with oxygen even after treatment
Any ideas?
It was a lot different than I thought it would be. The pure oxygen did not feel satiating at all. In fact, it made me feel somewhat short of breath..... so weird.
Right now I feel more brain fogged, tired, and low mood than before, very much so. My brain actually feels like it is in pain and swelling at the moment.
I know that it usually takes up to 40 treatments to do what it is supposed to do, so I am not going to just abandon it now, but I certainly do not want to do anything that will deteriorate my health.
Was definitely different than hawaii. Hawaii air felt relaxing and fulfilling and brain clearing. This pure oxygen felt stimulating almost ......
Right now I still kind of have that feeling like I'm not getting satiated with oxygen even after treatment
Any ideas?
merylg
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I have similar breathing problems to you. Ultimately I will get out of the city and away from moldy environment.
Other things worth considering:
Salt Room Breathing Therapy
Low Salicylate Diet (careful Aspirin challenge to see if u have this sensitivity...then avoid using Aspirin & other NSAIDs...)....extends to colours & preservatives in foods...and chemicals in everyday products. Caused by increased Prostaglandins leading to increased Leukotrienes. Avoid Omega 6 and take more Omega 3.
Can try Anti-Leukotriene med: Monteleukast (Singulaire) would have to take this all the time...didn't help me!
Can also be sensitive to Amines & Glutamates...they affect my breathing too.
Maybe you are sensitive to all medications (I am)...start everything on low dose and monitor tolerance.
Try sleeping with head end of bed raised up (so whole bed slopes) so less congestion of lungs overnight. I have tried this before and I think it helps...but i since forgot about it! I am going to try this again!
Do a Methylation Protocol...I am doing this and noticed improved breathing...but tweaking the Protocol supplements is hard work...ongoing process for me. Some say best to remove yourself from toxic moldy environment first otherwise you compromise any gain from doing Protocol.
So...these are things I am working on! Good luck!
meryl
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That is looking what I might have to do, relocate ... We will see
PokerPlayer
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I was in a hard chamber with a mask on and used 100% oxygen.
Within the first 2 minutes of putting the oxygen mask on I started freaking out and felt like I couldn't breathe. I thought this was a panic attack or some sort of psychological reaction to clostrophobia.... But the more I relaxed in the chamber mentally the more I realized that the oxygen actually felt worse than normal 21% oxygen air.
I am most likely not going to continue hbot. The anxiety I experienced was most likely a toxicity reaction, and I do not think it would be prudent to think it may be die off if continuing hbot has the possibility in making me worse instead of better.
Sushi
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You might want to read Dr. Jamie Deckoff-Jones's blog where she describes the way that she and her daughter use oxygen to very good effect. She has also opened a practice in Hawaii and feels better there: http://treatingxmrv.blogspot.com/
You may have to search back a few weeks to find the article where she talks about oxygen.
Sushi
PokerPlayer,
Thank you for sharing your oxygen experiences with us. This is something I want to try. Everybody is different so you can now move on to the next treatment plan. Dr. Cheney had a patient pass out when he gave them oxygen by mask, so you are not alone with a negative response.
All the best,
Rooney
Thank you for sharing your oxygen experiences with us. This is something I want to try. Everybody is different so you can now move on to the next treatment plan. Dr. Cheney had a patient pass out when he gave them oxygen by mask, so you are not alone with a negative response.
All the best,
Rooney
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From my reading, it seems as though people get different reactions. My body certainly despises too much oxygen. In fact, my brain still has a ton of inflamation and I hope it goes away soon.
I didn't agree with cheney's oxygen theory on face value, but for me at least it seems very viable.
I didn't agree with cheney's oxygen theory on face value, but for me at least it seems very viable.
slayadragon
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Briefly -
Cheney's theory is that the lower-than-normal oxygen levels in people's bodies protects them from oxidative stress. The less oxygen we are using, the less oxidative stress is produced.
This is true in general, but of course having less oxygen in our bodies has a downside too!
For whatever reasons, CFS patients have a greater than normal amount of oxidative stress pressure on their systems. This seems related to toxicity. Some of these toxins may be internally produced, but toxins in the environment do that too.
Certain chemicals produce more oxidative stress than others. Toxic mold, such as satratoxin, produces an especially large amount of oxidative stress.
Insofar as people's bodies are functioning with low levels of oxygen, they have some protection against these toxins. If you force oxygen into the system, the toxins become more damaging.
If indeed a bad environment is pushing people into oxidative stress, then increasing the oxygen in that environment is not necessarily a good idea since it just exacerbates the problem. On the other hand, perhaps if people can get away from that oxidative stress, they may benefit from it.
Of course, as with everything in CFS, there are complications. For instance, Lyme infections cause lots of oxidative stress too (Lyme makes a chemical similar to the one made by toxic mold), and oxygen can be helpful in killing Lyme (since Lyme thrives in an anaerobic environment). So for some people with Lyme as their main problem, HBOT may keep the Lyme in check enough to be beneficial overall, regardless of the environment.
And of course, working at a low level of oxygen is problematic because it causes brain dysfunction.
But in general, I think Cheney may be right in that oxygen is problematic for CFS sufferers. Most of them are super-sick and (from what I can tell) living in very bad places, so it seems that he sees that very frequently. Those CFS practitioners who have seen a different patient base (such as Lyme patients) may have had different experiences with HBOT, and I wouldn't necessarily assume that those transfer over to this patient base.
Very little of what I've written is commonly accepted -- it's based on piecing together various literature/theory and on my observations. So take it with that in mind.
Best, Lisa
Cheney's theory is that the lower-than-normal oxygen levels in people's bodies protects them from oxidative stress. The less oxygen we are using, the less oxidative stress is produced.
This is true in general, but of course having less oxygen in our bodies has a downside too!
For whatever reasons, CFS patients have a greater than normal amount of oxidative stress pressure on their systems. This seems related to toxicity. Some of these toxins may be internally produced, but toxins in the environment do that too.
Certain chemicals produce more oxidative stress than others. Toxic mold, such as satratoxin, produces an especially large amount of oxidative stress.
Insofar as people's bodies are functioning with low levels of oxygen, they have some protection against these toxins. If you force oxygen into the system, the toxins become more damaging.
If indeed a bad environment is pushing people into oxidative stress, then increasing the oxygen in that environment is not necessarily a good idea since it just exacerbates the problem. On the other hand, perhaps if people can get away from that oxidative stress, they may benefit from it.
Of course, as with everything in CFS, there are complications. For instance, Lyme infections cause lots of oxidative stress too (Lyme makes a chemical similar to the one made by toxic mold), and oxygen can be helpful in killing Lyme (since Lyme thrives in an anaerobic environment). So for some people with Lyme as their main problem, HBOT may keep the Lyme in check enough to be beneficial overall, regardless of the environment.
And of course, working at a low level of oxygen is problematic because it causes brain dysfunction.
But in general, I think Cheney may be right in that oxygen is problematic for CFS sufferers. Most of them are super-sick and (from what I can tell) living in very bad places, so it seems that he sees that very frequently. Those CFS practitioners who have seen a different patient base (such as Lyme patients) may have had different experiences with HBOT, and I wouldn't necessarily assume that those transfer over to this patient base.
Very little of what I've written is commonly accepted -- it's based on piecing together various literature/theory and on my observations. So take it with that in mind.
Best, Lisa
PokerPlayer
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Thanks for the replies jenbooks.
I pretty much agree with everything you said, and it is the exact stuff that I have been reading. The problem with me is that I do not have lyme symptoms at all. From what I gather, the main difference between lyme and cfs is not what their fatigue is at rest, but rather lyme sufferers do NOT GET PEM. I get PEM severely. I definitely have cfs/me and not lyme.
I did the therapy at only 1.3 atm, I did use a hood and not a mask.
I pretty much agree with everything you said, and it is the exact stuff that I have been reading. The problem with me is that I do not have lyme symptoms at all. From what I gather, the main difference between lyme and cfs is not what their fatigue is at rest, but rather lyme sufferers do NOT GET PEM. I get PEM severely. I definitely have cfs/me and not lyme.
I did the therapy at only 1.3 atm, I did use a hood and not a mask.
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The only way I could possibly stick to hbot for a longer amount was if I had tests or someone with experience in cases like mine assure me that my pro inflammatory reaction to oxygen was fine.
The only hypothesis that would make hbot good for me is if the oxygen causes a pro-inflammatory state in my brain that may feel bad but in the long run is good because it is killing some pathogen in my brain.
Right now I am still experiencing head pressure and depression 3 days later. I have not experienced this kind of head pressure and depression in a year, when I started eating broccoli and taking vitamin d and high dose fish oil.
Edit - The problem I hate most is my brain symptoms of brain fog and depression. Does anyone know if this could mean I have lyme? I don't think I have lyme, though.
The only hypothesis that would make hbot good for me is if the oxygen causes a pro-inflammatory state in my brain that may feel bad but in the long run is good because it is killing some pathogen in my brain.
Right now I am still experiencing head pressure and depression 3 days later. I have not experienced this kind of head pressure and depression in a year, when I started eating broccoli and taking vitamin d and high dose fish oil.
Edit - The problem I hate most is my brain symptoms of brain fog and depression. Does anyone know if this could mean I have lyme? I don't think I have lyme, though.
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Jamie Deckoff Jones had moved to New Mexico years ago for health reasons. (Is now in Hawaii and loves the health benefits as someone said.) I think parts of Arizona are good but parts aren't. Some can be too dry. Don't know if you have any asthma type symptoms but I read Arizona residents suffer from asthma a lot. Wouldn't want you to have that on top of symptoms, if you don't already, or make yours worse.
slayadragon
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I know one person, a Cheney patient, who has severe POTS as her main symptom. Cognitively, she's in pretty good shape, for instance. In his office, he gave her the oxygen. She immediately burst into tears and had a huge crash, and he ran from the room to get something to try to stop the reaction (I wish I knew what it was). This is someone I've interacted with to a very significant extent and trust (and who now is a lot better in every respect from mold avoidance). So I'm inclined to buy into the oxygen toxicity theory.
soulfeast
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this is timely. my md who is an ent and treats mold illness advises living on the beach. the frontal brain inflammation is what i have.. starts in sinuses. i have stage 4 sinus disease and need surgery. complete white out and cannot see any defined polyps or fungal balls because of the white out... which could all "just" be retained fluid full of fungus and bacteria. this would mean a sick building is in my head. from what i understand from md, beach helps this. my sinuses are to be cleaned and on antifungal sprays and nebulized.. and.. to use pure 02 for detox along with glutathione twice a day..
now a bit concerned about doing this because other than purchasing a concentrator.. i cant find a rental that will produce pure 02.. a 20 L capacity concentrator is required. MD has had success with this but not sure PEM status of previous patients.
i personally have always felt better at high altitudes which would mean low 02 but maybe thats because of oxidative stress and maybe a sign to me the 02 could be an issue. the 02 is to help with the detox though.
now a bit concerned about doing this because other than purchasing a concentrator.. i cant find a rental that will produce pure 02.. a 20 L capacity concentrator is required. MD has had success with this but not sure PEM status of previous patients.
i personally have always felt better at high altitudes which would mean low 02 but maybe thats because of oxidative stress and maybe a sign to me the 02 could be an issue. the 02 is to help with the detox though.
PokerPlayer
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I recently took a trip to the mountains and felt much more clear headed up there.
But soulfeast, are you actually going to live on the beach? Where do you plan to do this? I will never use oxygen again, unless there is a proven way to show that I have some pathogen that could be eradicated from it.
I plan on moving soon, going to look into many places. Camping on the beach in hawaii sounds awesome, but not practical. Is there any way to do this kind of thing practically?
But soulfeast, are you actually going to live on the beach? Where do you plan to do this? I will never use oxygen again, unless there is a proven way to show that I have some pathogen that could be eradicated from it.
I plan on moving soon, going to look into many places. Camping on the beach in hawaii sounds awesome, but not practical. Is there any way to do this kind of thing practically?
soulfeast
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first I am to get my sinsuses cleared of infection and continue my sinus protocol to keep the "sick building" out of my head. Part of this protocol is keeping my environment as clean of mold spores as possible and mold avoidance. from what i understand, the beach or desert have less mold spores in the air to trigger an upregulated immune response. There must be other healing properties to beach air as well, i am assuming with the 02 factor as well as ions?
we cannot move to the beach or anywhere for that matter due to my husband's job. So we are to relocate out of our wet woodlands environment where mold house is located and to a house that gets good sunlight, no shade trees, high elevation on land and keep it as mold free as possible.
02 therapy is part of the protocol as well. it was recommended to start slowly and work up. i'm confused on the type of concentrator to use though and would rather rent and test out first. i had a 10L concentrator but i was told this was not 100% 02.. and a little concerned about potential issues using 100% 02 for even healthy people.
we cannot move to the beach or anywhere for that matter due to my husband's job. So we are to relocate out of our wet woodlands environment where mold house is located and to a house that gets good sunlight, no shade trees, high elevation on land and keep it as mold free as possible.
02 therapy is part of the protocol as well. it was recommended to start slowly and work up. i'm confused on the type of concentrator to use though and would rather rent and test out first. i had a 10L concentrator but i was told this was not 100% 02.. and a little concerned about potential issues using 100% 02 for even healthy people.
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Ok, sounds like a plan. If I were you I would test out the place I was moving into for a while before I decided to move.
For me I have to go only 10 minutes from my house in seattle, wa before I find a place where I feel much better.
For me I have to go only 10 minutes from my house in seattle, wa before I find a place where I feel much better.
soulfeast
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thats interesting.. thanks for sharing that.. and good idea.. husband has been house hunting.. need to get surgery out of the way and some recovery time then make sure area is OK.. just down the road from our contaminated and being cleaned house.. but out of the woods.. kids and I are temporarily staying with family in another state.
jenbooks
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Poker Player, apparently Bainbridge Island has a really good camping area. This is from a gal who does infinitely better there than Seattle where she was bedridden. You could try it? I think it's just a ferry ride.
Glad you will be moving.
In terms of realistically camping--I made two posts that Susie of Canary Report put on her blog, and once I learn about solar I'll make a third. Maybe I'll even write a short ebook on camping for moldies/EI's. There are a ton of useful tips to be had, all of which I learned by making mistakes. The most useful thing about camping is 1) completely lift chemical and toxic mold load 2) can assess areas where you want to live, at your leisure, and in different seasons.
Just know, I am a complete advocate of the microclimate theory. I have seen environments change radically in a mere 20 minutes ride (for me anyway). Prevailing winds are HUGE. I am looking at a stunning perfectly lucid amazing blue sky 2 hours east of Atlanta. You never see this sky north of Atlanta until you get up into the mountains. It's the prevailing winds, which blow northeasterly, and take all the Atlanta pollution north. I'm assuming the winds here actually come from the ocean and there are no major cities to pollute the air. West of Atlanta, you have Birmingham so that corridor is bad.
Anyway, go check those camping posts.
Re: oxygen toxicity, perhaps a small percentage have it, but Cheney's patient group is the extreme of the extreme, and I don't think it's very common. OTOH, Poker, you are listening to your body.
Glad you will be moving.
In terms of realistically camping--I made two posts that Susie of Canary Report put on her blog, and once I learn about solar I'll make a third. Maybe I'll even write a short ebook on camping for moldies/EI's. There are a ton of useful tips to be had, all of which I learned by making mistakes. The most useful thing about camping is 1) completely lift chemical and toxic mold load 2) can assess areas where you want to live, at your leisure, and in different seasons.
Just know, I am a complete advocate of the microclimate theory. I have seen environments change radically in a mere 20 minutes ride (for me anyway). Prevailing winds are HUGE. I am looking at a stunning perfectly lucid amazing blue sky 2 hours east of Atlanta. You never see this sky north of Atlanta until you get up into the mountains. It's the prevailing winds, which blow northeasterly, and take all the Atlanta pollution north. I'm assuming the winds here actually come from the ocean and there are no major cities to pollute the air. West of Atlanta, you have Birmingham so that corridor is bad.
Anyway, go check those camping posts.
Re: oxygen toxicity, perhaps a small percentage have it, but Cheney's patient group is the extreme of the extreme, and I don't think it's very common. OTOH, Poker, you are listening to your body.