Mold or Oxygen? Feel better in Hawaii

[PokerPlayer]

Awesome post jenbooks, thanks for the reply.

I will definitely check out the bainbridge island camping area, I am not too far from it amazingly. I will try to check it out within the next few days!

That is a lot of equipment you posted about for camping, thanks for that, I am not too familiar with all this. I went camping a few days ago up in the mountains and I felt much more clear headed, yet I did not improve physically. I definitely feel different effects from different places, some places make my hot achey legs become perfectly normal again, some places make my depression 100% gone, some places make my body feel like it can breathe again... its all so strange.

 

[pine108kell]

I've done mhobt off and on for a number of years with very mixed results--a lot of experience. I am definitely oxygen deprived because the treatment makes me feel MUCH MUCH better inititally. I can actually read and stand and think and talk. Sometimes I am little more "sleepy" but it is a "calm" sleepy, not the "wired-tired" thing I usually experience and despise. However, I start feeling worse after 24 hours and have to be sure I do not exert myself for a few days. Yes, more brain inflammation--more inflammation all around.

Not an MD or biologist but although I think "oxygen toxicity" is certainly a disturbing possibility, I have generally continued the treatments for three reasons:

1) This O2 response is similar to the reaction I get from antibiotics and rife. I also get more inflammation, including brain, a day after taking antibiotics, just like O2. I am 99% certain the antibiotic response is a herx, so a similiar feeling from O2 makes me think it is also a herx. That is not real scientific but I have little else to go on.

2) I attribute an overall gain in health after about a year of using mhbot a few years back--I even did some big hikes and was considering and experimenting about going back to work--working for free for a short time. I admit I have not gotten consistent improvement since then though--in fact I have crashed, sometimes heavily, in cycles since and my experiment with work was a depressing disaster.

3) I test positive for lyme and diagnosed with lyme by 2 LLMDs, although I have PEM etc more like CFS.

4) I am desperate. I can not stand "doing nothing" when doing nothing doesn't work. I psychologically need to feel like I am killing bacteria even if I can not prove it is still really making me much better (and possibly worse). That is also why I still take a course of antibiotics every few months--just so I feel I am taking the bacteria down with me. Not real logical but that is how I think.

I wish I could experiment more with clean air and maybe mold for me. This is hard to establish. I have two small kids, a wife and live many hundreds miles from clean dry air or the beach. I am surrounded by TVA power plants and high humidity. Also, whenever I have been in these more clean conditions (e.g. the beach or mountains)--I end up overexerting myself because it is so nice outside and ruin any chance of doing a fair experiment. Being in the mountains makes me feel better, but I have always felt better in the mountains, which is where I grew up.

 

[Hip]

I don't think the feel-good factor of Hawaii is anything to do with oxygen levels. So I would not waste money with HBOT.

The feel good factor of Hawaii I suggest is the high sea salt content in Hawaiian air. Some time ago, I performed a small experiment, and set up a device to saturate the air in my bedroom with ordinary salt, in order to simulate a sea air environment. In fact, the device worked so well that the atmosphere in my bedroom seemed slightly misty due to the high salt content of the air. The following morning, when I awoke, having slept all night in this simulated sea air, I feel very, very good, and profoundly relaxed. So I think this salty air, being breathed all night into the nose, sinuses, throat and lungs, does something very good to the health of the body. Salt therapy (halotherapy) is known to be anti-inflammatory, antibacterial, and who knows, might be antiviral too.

The only downside of this treatment is the fine white layer of salt that you find on all your furniture and objects in the room the next day. This is easily removed with a damp sponge, but is a bit of an annoying limitation of this treatment.

If anyone is interested in trying this, and interested in how I created this salty air, let me know, and I will explain it.

 

[merylg]

If anyone is interested in trying this, and interested in how I created this salty air, let me know, and I will explain it.

I would like to know, thanks!

meryl

 

[taniaaust1]

I'd like to know too. I often take salt baths for hrs and found they do help me a wee bit if Im doing that daily

 

[Hip]

OK, what I did was use a cheap $20 ultrasonic humidifier that you can find on eBay.

I filled my ultrasonic humidifier with around 500 ml of water, with two heaped teaspoons of pure sea salt dissolved in this water.

The way an ultrasonic humidifier works is not by evaporating or boiling water into steam, but rather by creating a fine mist of tiny microscopic spheres of water. The ultrasonic vibration plate breaks the water up in to these tiny globules. So the salt is carried in these tiny globules of water as they enter the room air. (The salt would not be carried in the room if you were boiling the water, because steam molecules cannot carry anything with them. This is why you need an ultrasonic humidifier, that does not create steam, but a mist of water globules microscopic rain drops, if you like.)

As these globules enter the room air, they evaporate, and so the salt dissolve in them is released as very, very fine salt particles, and this salt stays suspended in the atmosphere.

I did not think this idea would work when I first conceived it, but in fact, when I tried it, it worked very well.

One point: don't use a salt that contains silicon dioxide (silica) as the anti-caking agent. Silica is a healthy supplement to take orally, but it should not be breathed into the lungs (silicosis risk). Some salts have sodium hexacyanoferrate II as the anti-caking agent, which don't think is good for lungs either.

I used pure sea salt with no additive ingredients.

 

[PokerPlayer]

Pretty interesting about the salt being relaxing. I did find something about the Hawaii air to be very relaxing. I do think that mold may play a role and am headed off to death valley, california (yep the middle of the desert) starting November 1st.

I will report back if I get any improvements. Would sure suck to go out into the middle of nowhere and feel the same, if not worse ... lol. Thats why I have a healthy friend to chaperone me.

I am going to be taking things with me, some people following the mold theory may say this is a bad move because they will be contaminated objects. But, I do plan on spending a day with nothing on but clothes I bought there and going out in the middle of the desert. I get nervous, anxious, and excited when thinking about the possibilities of this trip, so mostly I just don't think about it at all. Just going to go and see what happens, I don't really have a choice after getting a positive change from the hawaii climate. It is a must for me to further explore the locations effect.

 

[Hip]

Sounds like a good experiment. With the bone dry air of the dessert, plus the sterilizing effects of the ultraviolet light of the sun, I doubt if any mold will survive there, even if you bring it with you.

I find this change of wellbeing in different places very interesting. Before getting CFS, I always felt 1000% better in sunny places; but now with CFS, it's the reverse, as I find strong light and heat too much for me. But no doubt everyone different.


By the way, another way to get the benefits of saltiness in you sinuses is doing yoga neti (nasal irrigation) with a saline solution (see youTube for demos). I usually find I become noticeably more calm and relaxed after doing this salt irrigation of the sinuses. It may be that the salt has an effect on the pituitary gland, which is located just behind the sinuses

 

[PokerPlayer]

Hey so I got back from Death valley. Turns out it is pretty cold there. Camping was not fun at all. With wind it got to be 34 degrees, that alone was hard enough on the immune system.

I would say that the desert was about half as good for me as hawaii is. I got very good brain clearing, and my energy levels were much higher. However, I still got post exertional worsening of symptoms, and my hot achey legs and prostatitis remained as bad as ever.

Overall, I am glad I took the trip, as it confirms that location does play a big role in my illness. I am a little upset that it was so cold, and that I did not get an extended stay as I heard sometimes people may feel worse when they are in a completely zero mold locations at first because their body is "detoxing". I did feel much different. I had energy and my brain fog was a lot clearer, but my heart was palpitating and my pulse was high and I had insomnia where I couldn't sleep more than 4 hours. Actually, it was pretty similar to how I felt 2 years ago when I just started to have symptoms of this illness.


Right now I have my mind set on 2 possible locations to live: Kihei in Maui Hawaii, or Meridan on the Yucatan peninsula in Mexico. I do well in tropical climates I guess.

My plan of action now is good location + low dose naltrexone (slow titration, first attempt was a failure but I started at 1mg and felt too overstimulated to get good sleep for 3 days and quit)

 

[slayadragon]

This is a fascinating thread. i've not been to Hawaii (except Honolulu) or the Caribbean, so it's really interesting to hear people compare them to places where I've felt good.

Paul Beith and I put together a board called "The Locations Effect" for people with ME/CFS to share their experiences in different places. If folks here have a chance, please contribute your experiences.

http://locationseffect.proboards.com/index.cgi?

Best, Lisa

 

[Valentijn]

Right now I have my mind set on 2 possible locations to live: Kihei in Maui Hawaii, or Meridan on the Yucatan peninsula in Mexico. I do well in tropical climates I guess.

I lived in Kihei for a couple years, and I wouldn't consider it tropical. There is virtually no rain there (maybe one week a year there's a downpour and that's it), and it is more of a desert climate. It had also become very over-developed when I was there a few years ago, without the necessary infrastructure to support the number of people. So there was a lot of traffic and not enough parking.

 

[PokerPlayer]

Oh my gosh. I am back in Seattle and I have to comment on how remarkably quickly I forgot how TERRIBLE I feel here! Yesterday I was playing catch with a friend in a park in Las Vegas. I was running around and doing fine for 30 minutes. Today I am in Seattle and it feels like a 100 pound weight has been strapped to my back, my muscles are sore and weak at rest, and I feel out of breathe at rest for no reason.

This is all typical, as I felt like this before I left and it is the reason I left.

Oh yeah, also I took methyl b12 again while on my trip to the desert and it helped calm my nervous system a lot. My body can't handle it in Seattle and it actually makes me feel worse now.

 

[PokerPlayer]

I lived in Kihei for a couple years, and I wouldn't consider it tropical. There is virtually no rain there (maybe one week a year there's a downpour and that's it), and it is more of a desert climate. It had also become very over-developed when I was there a few years ago, without the necessary infrastructure to support the number of people. So there was a lot of traffic and not enough parking.

I feel much better in Maui, and spent much of my time on the beaches in kihei while there. Sounds like you did not get any improvement from being in Hawaii? I certainly do.

 

[kurt]

Here is an alternate hypothesis about Hawaii. There is some evidence of autoimmune involvement in ME/CFS which by now probably everybody here knows about, including a study in Hawaii, suggesting 95% of us have an anti-mitochondrial antibody (anti-cardiolipin I believe?). Then of course the Mella & Fuge study. I have been studying autoimmune conditions and was surprised to find a LOT of correlation between patient observations and complaints with ME/CFS patients. And here is one, people with autoimmune conditions often experience a 'location effect'. The general rule is that they do better at lower LATITUDEs, the closer to the equator, the better they feel. The converse is also true, and in fact there is about 100x the incidence of autoimmune disease in sub-arctic regions like Alaska than in equatorial regions. So far nobody has figured this out, the effect of the Earth's magnetic field was ruled out in one study. Some think there is a Vitamin-D connection with autoimmunity but I don't believe that has been proven either (still reading that lit).

So one thing special about Hawaii is that it is farther south, closer to the equator, than the rest of the US. IF you have an autoimmune condition as part of your ME/CFS, then this is consistent with observations in general autoimmune illnesses. Of course there might be a mold angle in autoimmune conditions.

 

[PokerPlayer]

Awesome post Kurt,

I have been looking at latitude and reading a ton and analyzing whats going on. The Latitude thing is interesting, but I am not entirely sure if it is true. If it were to be true, then that would mean I would feel even BETTER in a place like Ecuador because it is right on the equator? But I haven't actually read any person's experience with that .... I will store that in the back of my mind.

And yeah Jen, at the end of the day, practicality rules and I will just have to go where I can feel good and live sustainably.

 

[mojoey]

Hey PokerPlayer,

Been following your posts with much interest. Please continue keeping us posted on this wild adventure of yours!

I agree with you that it's not just the latitude, even if that is a factor. I've gone back to Taiwan which is along the same latitude as HI and also an island, but I felt terrible there. I think it's a combination of sanitation, industrial development, chemical deployment, air quality, wind quality, warmth.

I did not feel half as good in Death Valley as I did near a lake in Utah in the middle of fall. However, like you the lack of sleep (90s at night, chemical sensitivity to my trailer) played a big role in that. However, even when I finally was able to sleep in the desert (once there was electricity) I was still majorly reacting to the chemicals.

I would like to try it out again with my new trailer or just tent camping, but I'm not convinced my core symptoms would go away. When I was at Deer Creek State Park in Utah, my gut, vision, brain all improved without a few hrs of arrival. However, over the course of 3 days, the OI and PEM didn't budge at all.

I would love to try out a tropical area. I might be in florida soon so was thinking about taking a cheap flight to the Bahamas to try it out, but just found out camping isn't allowed in the Bahamas (govt saving the local economy largely dependent on tourism from bums like me!)

 

[anne_likes_red]

Pokerplayer,
Thanks for starting this interesting thread.

I didn't notice improvement in Hawaii myself (I was only there 5 days) but I noticed significant cognitive improvement when I spent time in the Cyclades Islands off Greece. I haven't experienced the same effect anywhere else. I felt it was more than climate.

PS Lisa I will contribute to your website I saw it mentioned on fb and didn't get around to it yet. Thanks for the link. Anne.

 

[mojoey]

Hi Anne,

Thought you might be interested to know that Erik Johnson said his experience in Crete, another island in the Mediterranean, is the best he's ever felt.

 

[mojoey]

Also the wide range of experiences in hawaii does reinforces my thinking that industrial activity is a huge factor. I've heard from one patient who's been to multiple islands and felt the best on Kauai (able to exercise and drink alcohol), which also happens to be the most uncivilized one.

Dr. Jamie Deckoff Jones is also in Hawaii, on the big island which has some of the worst air due to the VOGs, but happens to be near the northern tip in a part of the island that escapes the VOGs. She also gets the great trade winds up there. She has been clear that there is a definite cause and effect between moving from New Mexico and feeling better (although she says it's due to altitude shift only)

So I think a better question would be: if you've stayed on a fairly uncivilized coast of Hawaii, how did you do? rather than anywhere in Hawaii.

 

[anne_likes_red]

Thanks Joey,
I didn't know that.
I have always wondered about what I experienced. I'll message Erik on facebook sometime and compare notes.

Hi Anne,

Thought you might be interested to know that Erik Johnson said his experience in Crete, another island in the Mediterranean, is the best he's ever felt.