Mold or Oxygen? Feel better in Hawaii

Erik Johnson did not feel really great on the first couple of days of getting to a great place. He just felt enough better that he thought it would be worth trying to start doing "extreme avoidance" for an extended period of time, to see if he could get further improvements.

He spent some of the next several months in the deserts outside the Reno-Tahoe area, and some of it in town. He learned to be able to tell when he was being hit with the offending substances (sometimes indoors, sometimes outdoors), and used the decontamination strategies that he'd learned in the army (bag the old clothes, take a shower, put on fresh clothes) to make sure that he was "clear" after each hit. (Sometimes he was taking up to 10 showers a day. This is a little easier if people just go to a good place and stay there!)

By the end of four months, he felt like it was really working. By the end of six months, he was at "mostly recovered" status (with a few symptoms -- e.g. difficulties in doing math -- still present).

He decided early on that he wasn't going to take any supplements or drugs at all, to make this a "pure" experiment (so that people couldn't say that he got better for some other reason). He took some doxy at one point, but otherwise has been drug- and supplement-free since around 1999. (He does drink alcohol.) So maybe if he'd taken some sort of drugs or supplements, he could have gotten better faster, or gotten his reactivity to come down more. We don't know.

Presumably, it took a while for his system to repair itself and kill off some of the pathogens. He also has done a lot of detox through sweating (exercise), and says that he thinks he would still be a semi-invalid if he'd not been as aggressive with that.

Consistently, I've been able to tolerate just about anything I've tried in the Godforsaken Desert with no negative symptoms at all, except some tiredness and feeling crappy -- like a hangover -- from detox. (Well, I also trashed my adrenals, gut and liver from a super-intense detox, and so have had to work on supporting them. This toxin is scary stuff when it comes out and is very hard on the organs.) A certain school of thought is that going to the desert in order to be able to tolerate various treatments is a reasonable strategy.

I was in the Tohoku region of Japan in August 2007. This included Sendai and Matsushima, and then a lot of small spa towns to the west of there. But I actually did pretty well in Tokyo too, on that trip. That city felt to me a lot like New York City, where I also did pretty well for most of my illness. Those cities get a lot of air circulation from the ocean, and I think that helps.

It's hard to believe it would still feel good to me with all that nuclear radiation there now though.

Best, Lisa

Hey Lisa,

Thanks for the great clarification. The first time I went to the desert I was just hoping for quick improvements like I felt in Hawaii when I was doing much better. So, if I go again to the desert I will bring along detox supplements and give it a much longer time. Thanks a lot for your input, it may prove to be invaluable hopefully.

Cheers.

- Rob

From what I've seen, the further along we get in this illness, the harder it is to make those faster turnarounds just from a location shift. Some people I know who are only moderately affected (e.g. working but need to be careful) can feel a big difference by Day 2 in a new location, but more severely affected people (especially if they've been sick for a long time) often need more time.

I'm looking forward to hearing more of your adventures!

Best, Lisa

The author of the mold avoidance blog, "Ampligen4ME," considers the difference between Salt Lake City, the deserts of southern Utah and Nevada, Palm Springs, and Yucca Valley. Sleeping in his RV in all of these places allowed him to compare the differences in effects that the outdoor air had on him.

This is not my blog, btw! The author is "CityChanger."

Best, Lisa

*

"The more I do this biotoxin avoidance thing, the more I realize the name of this blog is fast becoming inappropriate. It looks like I will almost certainly be pursuing extreme avoidance for several months before I consider ampligen.

"Last week I did something I havent dreamed of doing in the last few years. I drove 11 hours in 3 days in a trek to warmer pastures. I drove 4.5 hours in day 1, 4.5 hours in day 2, and 2 hrs on day 3. I havent driven 4 hours in 1 day in at least 4 years, but considering all the other improvements Ive had from avoidance, I thought it was about time I pushed the envelope.

"I did need sleeping pills on one night, but besides that I had virtually no PEM from the trip. In fact, I felt so good driving through the Southwest that I literally felt high frequently while I was driving.

"After a few days of trying to find a good location in Southern California, Ive settled down in Yucca Valley. I am still incredibly reactive at this stage, because staying in a location that Lisa and some others thought was good [Desert Hot Springs, near Palm Springs] was actually the worst Id felt in quite some time. I feel much better up here."

http://ampligen4me.wordpress.com/2011/12/25/the-big-test/

ME/CFS patient and mold avoider CityChanger updates his blog.

I can still hardly believe what Im typing. PEM, the hallmark symptom of ME/CFS. Gone. I increased my hike from a leisurely pace intent on keeping my HR below 105 at all times to a brisk pace with my HR constantly at or exceeding my anaerobic threshold (according to Pacific Fatigue Lab calculations of [220-age]*0.6.) Not only that but I increased my hiking distance to 50 minutes. My HR was at 120-130 nearly the whole time I was hiking today. (That number freaks me out because clearly I still have POTS and Im acting as if I dont. )

By the end of the hike, my muscles were actually in quite a bit of pain (I dont have fibro, for the record). Its an almost alien sensation to feel my muscles aching like that, clearly due to my bodys reliance on anaerobic metabolism leading to lactic acidosis, while actually feeling totally clearheaded and, well, good overall. Still I keep waiting for the PEM hammer to fall. Its usually when I discover I feel better at the end of the hike versus at the beginning, that I sheepishly allow in the option that I wont get PEM. Feeling better after any degree of exercise, mild or moderate, is something which has never happened before in all my 6 years of ME/CFS.

http://ampligen4me.wordpress.com/2011/12/30/another-day-without-pem/

Here's another case story of someone experiencing a remarkable remission while in Hawaii.

http://www.x-rx.net/blog/2012/03/guest-blog-seeing-jamie.html

>For a bedbound person, it was astounding to see her snorkel and swim with such joy, go out for dinner, watch her chasing scary bugs around the place we were staying, talk and laugh and engage, and overall enjoy life in a way we havent seen and she hasnt experienced in years and years.

In the past, Jamie Deckoff-Jones has acknowledged that she seems to feel better every time she travels from her home to Santa Fe to her place in a particularly pristine location on the big island of Hawaii.

Despite this, the idea that this patient may have been helped by the "Locations Effect" is not discussed in this guest blog post. Instead, improvements are credited to tapering off a variety of prescription drugs, oxygen therapy and the doctor's tender loving care.

That being the case, it will be really interesting to me to hear how this patient does back in her old environment (a home in Washington D.C.). So far, the report is as follows:

>We travelled 16 hours to get back to DC last night. It was awful for all of us. K isnt doing cartwheels today, but shes also not curled up in PENE fetal position. In fact, shes voraciously catching up on all the political TV coverage we couldnt watch in Hawaii.

Best, Lisa

Lisa,

I can't help but think the environment at the northern tip of the Big Island contributed. The trade winds are constant, blowing in over 2600 miles of open ocean, and the air feels lively and fresh up there. At the same time, this month was the rainy season and we had a lot of rain during the month, as well as some thunderstorms that I wasn't expecting, but it remained warm enough to keep the windows open on the leeward side of the place we were staying, so that fresh air was a constant. The place we stayed was also unique -- a mandalahomes.com round house of cedar with eucalyptus wood floors. There'd been a cat in the place, so I was sneezing, but otherwise it also felt fresh, despite the constant rain. We had to drive 20 miles south to get out of the rain to the sunny and sandy beaches, as the shoreline up north is cliffs and rocks.

Anyway, we're not expecting the level of improvement and energy will remain back here on the E. Coast. For one thing, we don't have access to a hyperbaric chamber here or the neurofeedback, which helped so much with the detox. However, the trajectory was already upward over the months since we first saw Jamie in Sept, and we still have access to the high-flow oxygen here, and Jamie is continuing to address the many continuing health problems.

Were the sparkly air and non-toxic building materials in the house where we stayed contributors to the improvements? No reason to think that they weren't or that we won't see a more "normal" level of functioning now that we're back. But what's "normal" was already consistently improving before we went for the month, and there's no reason to believe that won't continue. We'll see.

It is misleading to suggest that was was described in the blog post is a "remarkable remission while in Hawaii". What is described in the blog is the result of months long, ongoing treatment. The consultation and treatment just happens to have taken place in Hawaii, but the patient lives elsewhere for the vast majority of her time while under the care of Dr. Deckoff-Jones. She also clearly did not change instantly while on vacation, as was implied by skydragon.

If I recall correctly, Dr. Deckoff-Jones' own personal improvments while in Hawaii referred to the altitude change, not the "locations effect". Santa Fe, New Mexico, Dr Deckoff-Jones' usual residence, is a very high altitude and many people have problems with high altitude, not just ME patients.

Despite being in Hawaii for a month, this patient's stay in Hawaii was temporary. The vast majority of her time has been spent at home on the East Coast. Were the assertions correct in the above post, one could expect no ME patients living in Hawaii. Perhaps someone has direct knowlege about that point, I would guess there are indeed other patients living there.

Dr. Deckoff-Jones reported consistently feeling better at her home on the big island of Hawaii, and at first she suggested that her improvements were due to altitude change. However, later she took a trip to a different location at a lower altitude and said she did not feel better. I thus would suggest that perhaps her improvements in Hawaii were not due to a change in altitude.

There is no reason for anyone who wasn't there to debate whether this patient's improvements were due to location. The person likely to give us the best information on this is her mom (valb626), who has contributed directly to this thread.

Hopefully this patient's improvements will continue now that she's back at home. It would be much easier for everyone if they do, so I will keep my fingers crossed for her. Perhaps we will find out more details of what happens as time goes on. I personally am really interested either way!

As the prior part of this thread suggests, moving to Hawaii is no assurance against getting the kinds of toxic exposures that seem that they may be particularly associated with CFS. There are lots of moldy buildings in Hawaii, and some of the places there (such as the cities) may be toxic as well. On the other hand, Dr. Deckoff-Jones acknowledged that she chose a particularly pristine location in Hawaii, and has commented that she is careful about mold in her homes (her husband knows a lot about construction and seems qualified to look for it). She clearly learned a lot about this topic after extensive personal discussions with Ritchie Shoemaker, Erik Johnson and me, and put that knowledge to good use.

Best, Lisa

Yes, Lisa, Jamie is really lucky to have found you and Erik and that you have straightened her out. She is so lucky you cleared up her Harvard-muddled mind and set her on the straight path. Thank God you got her to practice in Hawaii, that was really insightful of you to tell her to go practice there, and that is why she is there now. In fact, I bet the patient described in the guest blog is really grateful too that you sprinkled your vast knowledge on her situation and made it all better.

No, she set up her practice in Hawaii because that was where her medical license was valid. I have no idea whether the reason she purposely chose a pristine location on the big island was in any way a result of discussions with me. She's not thanked me for it, if it was.

Best, Lisa

Janis updates her blog with information about her experiences in Hawaii.

>But in driving up the coast to check out some camping areas, I found places where my head cleared. I felt particularly good in the south Kohala coastal area. As soon as we turned around the NW corner of the island, coming into Kahaau and Hawi, I got congested again. Taking the highway back through Waimea to Kailua, I felt great on the stretch due E of that dry area and decided Id look for housing in that area if I ended up staying on the island. I continued to sleep outside and work outside, despite periods of rain, because I felt jittery inside the house.We learned the last day that the owner had a pesticide company come monthly to spray the perimeter and set pesticide pellets in the garden right next to my sleeping area and I wondered how much pesticides could have been triggering me rather than mold.

http://cfsmethylation.blogspot.com/2012/04/better-than-view-more-hawaii.html

I've had CFIDS since 1991 - with no apparent reaction to mold or anything else - but now I do. Since a toxic mold exposure last year everything has changed.
What I'm curious about is exactly HOW do you (anyone) travel, experiment w/ different locations, camp in the desert, or anything else while already sick plus now these mold illness symptoms??
Just to be clear I am not being sarcastic or whatever at all - I am basically homeless myself right now (I mean I can't live in my mold contaminated "home"), and it's all I can do to move from hotel rm. to couch back to hotel... I can't drive more than a few miles and probably even shouldn't do that.
HOW do you all do this??? How do you travel from place to place?; camp in tents?(I have pain even from hotel beds); what do you eat?; How do you pay for all this? ETC.
Again - sorry for the negativity, I'm having a bad day (although I've had much worse in the past few months - at least I can sort of use my computer today) but I would sincerely like to hear from anyone who is doing/has done this.
It all seems just impossible, hopeless.

I started out by moving from my bad house to a better place, without taking any of my possessions with me. I didn't feel much better right away, but I reacting so strongly to my possessions from the house after just a couple of weeks that I felt very strongly that this was the right thing for me to be doing.

This was in Chicago, which is by no means a pristine place but (at least in the area where I was living) was not terrible either. It was good enough to let me move toward wellness, anyway. If I'd been in certainly other places (e.g. SF Bay Area, Rochester area, Dallas), I doubt I'd have made any progress at all.

Within six months, I was feeling somewhat better. Definitely an improvement, but still not ready to do any sort of camping.

After about nine months, I spent a month in the mountains in Colorado and got somewhat stronger. Then I camped for the first time, with help from someone else. I felt so much better in a clear environment that I got really enamored with it.

I went back to Chicago for a few months after that, but I missed being in a good environment camping that I headed west. I bought an SUV and tried out some different places, eventually ending up camping full-time. Then I bought an RV.

What I found was that if I was in a good location, I could do FAR more than when I was getting exposures. So I made it a point to press for being as clear as I could. As a result, my body gradually started to detoxify itself and I started to heal.

Probably I would have made faster progress if I'd gone from being bedridden to a tent in the desert, but (especially since I'd never camped before at all) I wasn't able to do that. Just moving toward wellness one step at a time was productive though.

This is not an especially inexpensive way to get well, I admit. It's harder when resources are really limited, but I've seen people do it.

Best, Lisa

lisaann,

I dragged myself moribund and practically bedridden, out of my moldy apt with my partner, we drove to a bed and breakfast in a fairly healthy location south of Atlanta--the b&b had been renovate din 1997 so not too many chemicals and little mold at that point, it was fall, the dry season, and it was on 900 acres...

I felt SO MUCH better there, we stayed two weeks, went back "home" for 7 weeks, miserable beyond belief, went back to the b&b and rented it off and on for about six weeks, then moved to another hotel, not as good, but still pretty good--hardwood floors, window that opened, no noxious chemicals, and it was quiet enough in winter. I negotiated half price for a monthly stay, not taxes. So similar to what Lisa did.

You will still react, there will still be toxins, ordinary molds, bla bla bla, but if you can improve enough then you may try tent camping. Going straight to tent camping could be hard when really sick, though it has been done. PM me if you want.