I knew when I posted something positive about the use of oxygen for ME/CFS, I would hear about Dr. Cheney’s views on oxygen toxicity, just as I heard about his views on the use of Klonopin, when I said that I am opposed to any avoidable use of long term benzodiazepines (understanding full well that sometimes it can’t be avoided). I disagree with Dr. Cheney about a lot of things. Gasp! And agree with him about others. I am in the process of launching a Physician Working Group for the WPI and Dr. Cheney will of course be invited. It is wonderful that he and I can disagree and are going to work together to figure it out. There are going to be lots of other people who disagree with me, and each other, about many things. In fact, I’d say, there is absolutely zero chance for consensus in the group I’m putting together, but I am hoping for a melding of minds, nevertheless, for the betterment of patients. One thing I am sure of, we all want the same thing, to help people get well.
My understanding, from email communication with Dr. Cheney some time back, is that he is looking at one parameter, IVRT, of one organ, the heart, by echocardiogram, after administering low-flow oxygen by nasal cannula, as well as exposing patients to other substances in sequence. If I put an oxygen cannula on your face, at a time when you are under stress, and your IVRT, a measure of diastolic function gets worse, what does that mean? Hyperoxia causes vasoconstriction in normal tissues, so a compromised circulatory system might look worse at that moment. So what? I talked about and referenced all the reasons why repeated exposure to higher than normal amounts of inspired oxygen might be a good idea over the long haul, even if the treatment produces a few more free radicals than usual, for which antioxidants can be given. Free radicals are necessary for life, involved in intracellular killing by phagocytes and redox signaling. In hyperbaric wound care, high doses are needed to produce free radicals to kill bugs.
Dr. Cheney described a reaction to oxygen, in which patients become anxious or even obtunded, which I don’t understand. I administered very large doses of oxygen to chronic Lyme patients, who in hindsight had ME/CFS, and lots of patients with other diagnoses, including a couple of post-stroke COPDers with CO2 retention, and never saw anything like what he described, even in a very claustrophobic environment, the inside of a multiplace hyperbaric chamber, that looked kind of like a submarine (link to photos here and here of our chamber at New England Hyperbaric Center 1999). Nor did I ever see anything like that in many years of high volume emergency medicine practice, except in acutely decompensating chronic COPD patients.
The idea that the cells of ME/CFS patients utilize oxygen in such a different way from all other animal cells such that doses safe for other humans would somehow be dangerous for us seems ludicrous to me. I’ve gotten a bunch of confused mail about how ME/CFS patients have “high oxygen” already and more is toxic to them. CFS patients have normal oxygen saturation, O2 Sat, in the blood, meaning the carrying capacity of hemoglobin is normal. Oxygen travels from the arterial blood into cells by diffusion along a pressure gradient. The issue in ME/CFS is cellular hypoxia, meaning the interior of the cells are starved for oxygen and the mitochondria can’t generate ATP properly, due to poor mitochondrial function. So no gas in the tank. The mitochondria are the energy factories of the body and they are mucked up, still producing enough energy for life through the same chemical processes utilized by all eukaryotic cells, but with an inadequate supply of substrates necessary to generate ATP, and inadequate reduced glutathione to prevent damage by free radicals and other reactive oxygen species. Sometimes I wonder if it is more diabolical than gunked up machinery, that the virus doesn’t like oxygen and therefore causes the host not to be able to move. I presented the evidence in the literature for the use of oxygen in autism. Since I believe autism is essentially the same disease as ME/CFS acquired earlier in life, with the same mitochondrial problems, it seems logical to try mild HBOT for ME/CFS, especially in light of the very low risk of harm.
At the time that I left hyperbaric practice, I was worried about the possibility of an explosive decompression, a potentially lethal event, in a soft chamber, as they are not rated for hundreds of compression cycles. I was opposed to home treatment on that basis, not because of any inadequacy of the treatment. Since then, my understanding is that there have been more than 10,000 FDA approved soft chambers sold, and the thing I was fearing hasn’t happened. If they leak, they give at the zipper and don’t lose pressure suddenly. The only serious accidents have been related to modifications made to allow higher than rated pressures. There are risks, even to mild hyperbarics, and nobody should undertake it without training from a professional, but it’s not that hard, once you get the hang of the concepts.
Whatever is happening with respect to the length of diastole when oxygen is administered, it seems to me that we should be worrying more about the brain than the heart in light of the clinical course of most patients. The brain is very sensitive to ischemia. Whatever the oxygen saturation in the blood, ischemia can be present downstream of vascular spasm. That’s what I was addressing with some of the literature I posted. Not that we are having strokes, but that some of the cognitive issues may come from repeated localized ischemic insults, mini TIAs (transient ischemic attacks), during periods of vascular spasm. It seems rational to me to combat that with oxygen.
This is a blog, evolving opinion, not a statement of fact. I am sharing my thoughts, before even trying things in the present context, before proving anything. I am, however, putting my money where my mouth is, and I will continue to share our unfolding experiment in real time. I do this, not because I am trying to convince anyone that I am right. I could be wrong about anything. I am sharing my thinking as it happens, because we are in uncharted territory and there is so much suffering and desperation. None of us have years to waste. I have experience to tap in to and there is shockingly little information available when considering options. But at no time am I suggesting that anyone else should do what we are doing.
I posted our planned infusions, before knowing the outcome, as I’ve done all along with everything. Some of it for me is an attempt to learn from others, because patients and doctors write to share their experiences and ideas. We have done similar infusions in the past that were not noticeable or effective, concurrent with antibiotics for Lyme Disease. We did our first infusion of the formula I posted yesterday and we are working out the kinks with our doctor. Surprisingly, at least to me, we did feel it, Ali positively, me, not so positively thus far. I’ll let you know. I don’t want to start tweeting, but I put it out there last post thinking that it could only be positive or nothing, and I may want to reconsider that, though I still expect that any adverse effect would be mild and temporary. My sleep was disturbed last night and I was kind of wired today and not as stable as I have been. My guess is that it was from the Leucovorin, a folic acid derivative, the only component I haven’t been exposed to before. Deplin can cause similar adverse reactions which are dose related. I find it encouraging that the infusion was noticeable to both of us, but the formula needs tweaking.
As you might expect, I’ve been doing a lot of thinking about MCS these days, at least in the form that Ali is having it. I was speaking to the father of a patient today who is having severe light and sound sensitivity, much like the very severe patients in the UK and Norway. Ali is being triggered by smells, even natural smells like essential oils. My light bulb for today was that these problems are all very similar, all extremely heightened responses to different sensory stimuli. My first symptom was heightened and altered sense of taste. Many patients, and autistic children, have problems with touch, can’t stand tags in clothing, are hypersensitive to light touch, etc. I suspect it’s a kindling phenomenon, less than seizures, but similar, a little less than a full blown disease, as often happens in ME/CFS. Networks of neurons are being synchronized inappropriately by sensory triggers. Repeated stimulation leads to threshold reduction. I am not saying that biotoxins or petroleum products aren’t the trigger for some, but it doesn’t look to me like that’s what’s happening to Ali. It changes my thinking about how to approach it. If it’s a problem with detox and being unable to handle total toxic burden, one set of possible solutions, but if it’s being set off by smells, it’s the response that needs to be attenuated. I am not saying that we aren’t decontaminating and restructuring things so that she can avoid being triggered, which is a big task for an already over-taxed family, but it isn’t possible to be in the world and avoid smells. It is making me think about neurofeedback again. Another topic for another day…
>Wow, interesting analysis…hmm. My daughter, too, demonstrating hyper-reactive responses/reactions to a myriad of otherwise "normal" stimuli. Yes, not what would be just toxins, EMF, uv light, ect. So hard to evaluate when looking through the scope of "normal". Thank you for the insight.
>Love your open mindedness of working with Cheney even though you disagree with many of his theories. Will Nancy Klimas be a part of the working group?
I also understand your reluctance about long term use of benzodiazepines. Unfortunately, as you know for many of us sleep is such a problem and not many medications out there that are effective.
>I use the same type of bar soap to wash my hands all the time. Sometimes when my health is going through a rougher patch, perhaps because I have seriously gone over my activity limits, say once or twice a year, I find the smell of the soap to be completely repellent, making me feel sick, and I can't wait to get away from it. A week's intensive rest and it is fine again.
I have wondered before if this was a brain symptom, because if it was an allergy or a reaction to something known to be toxic, surely it would happen all the time? e.g. I always feel sick when near cigarette smoke, I always get hayfever. But this occasional reaction to the soap? Is this maybe what people with MCS have all the time?
>On the previous entry's comments section, Dr. Deckoff-Jones wrote:
>Lisa, Withdrawing suddenly from Klonopin is a very dangerous and foolish thing to do. Encouraging others to do it is truly shocking to me. Benzodiazepines are physically addictive. Abrupt withdrawal can cause seizures. Please be careful. You don't want to have to live knowing that someone suffered permanent brain injury or died in a tent in the desert, because they did what you suggested. Benzodiazepines need to be weaned carefully after long term use. Jamie
*
As I myself wrote on my comment there:
>I didn't suggest to either person that they try it — they figured it out on their own.
I didn't even bring it up to either of these people that I'd weaned off benzos with no effects within a week after moving to a good location. The effect was so noticeable that it just happened for them, as a result of not getting any symptoms when experimenting.
I've gotten reports of it happening for a substantial number of others too.
Certainly I wouldn't encourage anyone else to do anything of any sort though. I'm not a medical doctor and not am encouraging anyone to do anything. I'm just supplying information here about what people have experienced, for the sake of better understanding the phenomenon.
A third person — classic ME/CFS, XMRV+, huge Valcyte die-off — came to Death Valley with all new stuff (tent, clothing, supplies) last week on 70 pills a day. While here, she felt so good that she dropped just about all of them, including the beta blockers (which had been essential back at home). She went from just about bedridden (severe POTS, severe PEM) to hiking all day every day, swimming, drinking three beers in one day, eating lots of sugar, feeling wholly normal, all symptoms gone except mild-ish cognitive remnants and cold intolerance). Then she went back home and all of her symptoms immediately came back.
We need all the information that we can get about this illness. The fact that CFS doctors and researchers consistently throw away information about the biotoxin avoidance phenomenon and focus instead on theories and treatments that neither fully explain the phenomenon nor help patients is what continues to be shocking to me.
Best,
Lisa Petrison, Ph.D.
lisapetrison at yahoo
>Thanks for the post!! It seems obvious that just one person will not be able to have all the answers for us. I am just very happy that great brains like both you and Dr. Cheney are helping to unravel the truth.
>There has to be other ways to deal with this illness. Hyperbaric Oxygen Therapy is ridiculously expensive and unattainable for the most part to the ME community. Do you WANT mainstream medical doctors to completely write you off, if they havent already? This does not help us! We are really sick!
>I happen to be one of the people with high Co2 levels and normal O2 sats. I am not able to do hyperbaric but wonder if an O2 condenser would help a little.
I have had slow but good improvement with taking valtrex. I added Cipro because it had helped in the past with interstial cystitis symptoms and energy levels. It has precipitated some more dramatic improvement. I also added olmestaran. My biggest problem now is poor balance.
Marilyn B
>Phenomenally educational post! Thank you so much for so clearly explaining your thinking. I find this blog invaluable for its information and its inspiration.
>I'm a huge fan of hyperbaric oxygen, as it has helped me far more than anything else I have ever tried (and that's a lot!). An intensive course of it last year, 30 sessions over about 2 months, essentially gave me my life back. I was being cared for by my parents, the shortest of walks (20m) would give me severe PEM and I was unable to read more than a sentence or 2, with a constant feeling of pressure in my head and nasty headaches. I felt a huge relief in my head in the first few sessions and I began to be able to read more, sleep improved and between 5-10 sessions my energy and stamina greatly increased. I was able to move back to my own flat and regain my independence. The improvement leveled out after about 15 sessions. It didn't get me well enough to return to work, but my quality of life is much improved. I now do it once or twice a week.
I notice that you advocate mild HBOT, but for me the greater the pressure (and therefore soluble oxygen in the blood), the more beneficial I find it. My first 10 sessions were done privately at about 45ft, but that was expensive and I then went down to 24ft at a charity run multiple sclerosis therapy centre. Since then I have joined a different MS centre that does sessions at 33ft, which I favour. We are very lucky in the UK to have a network of MS centres that make HBOT affordable and they welcome patients with all neurological conditions.
Here is a link to a case for the use of oxygen therapies that I published on my Facebook page:
http://www.facebook.com/note.php?note_id=197978326912098
>After summiting Whitney (14,500 ft.) for the first time after abandoning Dr Peterson's ampligen program to "try something crazy" instead… I was struck at how many climbers were suffering from altitude sickness… while I was not: "Not too shabby for someone with CFS".
I thought about Dr Cheney's oxygen toxicity concepts, and thought to myself "They're going to want to hear about THIS for SURE".
Whatever it is, this seemed like a Helluva clue.
>Lisa,
"They figured it out on the their own" means that they played Russian roulette and got away with it. Incredibly stupid thing to do.
Jamie
>My son, on the autism spectrum, can be super sensitive to smell sometimes as well. I know he is doing better when he can walk into a health food store without wanting to leave immediately. I think that is one of his symptoms that improved with about 35 sessions of HBOT, but he is certainly not recovered from his unusual sensitivities. I have come to think of his super sensitivities as similar to Linda Watkin's theory of chronic pain. I have found that HBOT helps, Low dose naltrexone helps, and possibly Dr. Theoharides' mast cell product (neuroprotek) may help (too soon to say, but it seems promising).
Good luck to Ali with the HBOT!
Betty
>Consistently, I tell stories about people who have improved in various ways as a result of biotoxin avoidance, as a way to get doctors and researchers to realize that this phenomenon is important and to look into it.
Consistently, most doctors and researchers find a variety of ways to publicly ignore, disparage, minimize, bury and deflect attention away from the phenomenon in order to pursue their own agendas.
I find that really perplexing.
I'm not suggesting that anyone go off benzos cold turkey. If someone were to ask me, I would tell them that I did not think it was a good idea.
I'm not suggesting that people go to the wilderness as a way to more easily get off benzos either.
It's the phenomenon of sufferers getting so much better, in so many different ways, when they get to a good place that the professionals who claim to be concerned about ME/CFS patients — but who are mostly doing nothing whatsoever to help any of us except maybe making us feel "understood" — should be attending to.
Best,
Lisa Petrison, Ph.D.
lisapetrison at yahoo
>Here in the UK, I asked my GP about HBOT about 25 years ago when I first read about it being tried for ME patients. He told me that people had been shown to get permanent nerve damage from it and dissuaded me from trying it.
Is this actually an issue or something that has been resolved now (sorry if you have mentioned this and I have been too brainfoggy to spot it)?
>Regarding benzos, I would encourage anyone contemplating their use to visit benzo.org.uk before doing so.
I spent 3 years on Klonopin, in hopes of the so-called "protection". I then spent 2 years of literal hell trying to get off of Klonopin. Before my Klonopin "experiment", I had only mild insomnia, and I never even knew what anxiety was. It's been over 10 years now, and I still struggle with the resultant anxiety from withdrawal. I also have horrible insomnia since then, and I fear it has ruined my sleep forever.
The idea that benzos aren't addictive is nonsense, regardless of Dr. Cheney's feelings on the subject. I would urge no one to use them long-term.
>Dr Cheney and Dr Peterson are absolutely brilliant and knowledgeable,
but in a strange kind of way….. as Thomas Kuhn points out, excessive erudition can serve as a hindrance to new ideas, as those with the old will step up to protect the correctness of the current knowledge-base.
When one is extensively educated in "What is", they are inadvertantly inculcated with a conceptual framework that tells them "What ISN'T"
The very level of knowledge of well-educated people serves as a bar to new paradigms.
Sometimes, to "See it" when the thing is utterly unfamiliar, one needs to borrow the eyes of a child, with no fixed convictions or predetermined notions.
I believe it is the entire subliminal "conceptual framework" which people possess, that causes them to automatically recoil from our very odd stories of the "effect".
>to eric mold warrior
were you able to climb the mountain due to ampligen? did you crash afterwards?
>Seems to me that ErikMoldWarrior is suggesting that dumping the ampligen (and perhaps entire allopathic) approach to this illness and finding himself inexplicably tolerating an environment with very little oxygen pressure implies that "oxygen toxicity" may, IN FACT, be a problem, no?
>Yes, my experience seems to confirm Dr Cheney's hypothesis, but I had no means to tell anyone because people hear "mold" and are under the impression they already know what mold does or does not do.
In our case, certain toxins from specific molds seem to be adept at reprogramming our redox cycle for oxygen uptake.
And in contrast to other toxic "reprogrammers", mold is extremely ubiquitous and difficult to avoid encountering, so in that regard, it is more problematic and requires extra attention.
I was approved for the cost-recovery ampligen trial, but couldn't afford it.
Taking a wild leap at "Extreme Avoidance" was the only option I had left.
The reprogramming of oxygen uptake seems to dictate whether one crashes afterward, and I conducted this strategy successfully enough to cross the threshold at which exercise would be deleterious.
The only thing more amazing than stumbling over this effect is discovering how much researchers did not want to hear about it.
>My question would be, what does one do to avoid biotoxins when the praticality of raising a family is a major hurdle, especially in this economy where jobs are scarce. Going solo or with a partner is one thing; enter kids into the equation and living in a tent is not terribly realistic without a trust fund.
Also, Dr. Decker-Jones, what do you suggest for sleep for those of us who really do have a disrupted sleep architecture, where sleep modulates the illness?
>I can only say that there is nothing fair or reasonable about this illness.
When one reaches a point at which they can no longer stand up, do basic chores like cooking, and crawling to the bathroom instead of walking becomes the customary mode of locomotion, retaining any semblance of normal life is no longer achievable.
It is at that point in which the concept that one still can carry on that becomes unrealistic.
Although I agree that living in tent is scarcely a viable option.
I am currently inside the city limits of Reno, Nevada, just a short distance from the Whittemore Peterson Institute, in a specially designed "Mobile Environmental Control Unit" which allows me to bring just a litte bit of "Godforsaken desert" to the biggest little city in America.
>Erik,
The idea that you improved your cellular hypoxia with hypobaria makes no sense to me. You are postulating that you are a facultative anaerobe:). Much more likely is that you improved from exercise, which was possible by virtue of avoiding triggers, and epo, which is antiiflammatory and produced when going to altitude. There are also volume shifts which occur at altitude that may have played a part, since the normal diuresis that should occur doesn't work properly in us, in my experience (diuresis going down is maladaptive, but inappropriate volume expansion might help with ME/CFS symptoms going up).
Jamie
>Here's a good write-up on acclimatization to altitude:
http://www.sport-fitness-advisor.com/acclimatization-to-altitude.html
>Action for M.E, a British charity, wrote an article in 2006 in their bi annual magazine about patients experiences with oxygen treatments, including HBOT, thought it might be of interest. http://www.afme.org.uk/res/img/resources/IA%2058%20A%20breath%20of%20fresh%20air.pdf
>Btw, Death Valley, where some seem to feel so good, is a mild hyperbaric treatment, at almost 300 ft below sea level.
Jamie
>I'm getting a variety of people asking me whether their experiences with the Locations Effect could be due to altitude.
Some, as above, suggest that low altitudes could feel good because of the presence of a lot of oxygen.
Others question whether they felt good on a particular mountain as a result of the lack of oxygen.
A simpler theory is that if people are particularly sensitive to specific kinds of toxins, places without those toxins are going to feel good to them regardless of the altitude.
Certainly, some people are sensitive to altitude and need to factor that into their decisions about where to travel.
However, I've yet to observe anyone state that they get a lot better anytime they're in ANY place at a low altitude (or at a high altitude or at a medium altitude).
It seems to be only certain places at a low altitude (or a high altitude or a medium altitude) that do the trick.
I've felt equally great in places at 12,000 feet, at -200 feet, on the coast, in the woods, in the desert, on the prairie and even (occasionally) in cities.
As long as a place is not being influenced by the very specific sorts of toxins that bother me, it's a Good Location in my book.
Best,
Lisa Petrison, Ph.D.
lisapetrison at yahoo
>>My question would be, what does one do to avoid biotoxins when the praticality of raising a family is a major hurdle, especially in this economy where jobs are scarce. Going solo or with a partner is one thing; enter kids into the equation and living in a tent is not terribly realistic without a trust fund.
Last summer, I spent some time interacting with a severely ill Cheney patient living in a moldy house in Ann Arbor (a town that seems to have become especially problematic for some of us with biotoxin reactivities).
This person spent a couple of weeks in Kansas (living in the very clean Victorian home of a recovered CFSer/mold avoider) and Colorado (staying in a clean hotel accompanied by this same recovered CFSer), in order to get clear and find out whether she benefited from avoidance.
Most of her symptoms went away during this time.
As a result of the experiment, she decided to move to Boulder because she thought that it was a place where she would feel psychologically comfortable and because other Moldies reported good things about it. She rented an apartment sight unseen, thinking that if she got there and it was bad, she could try somewhere else.
She got her ex-husband to drive her there and settled into the apartment (which turned out to be reasonably okay). She lived there for several months, recovering some of her health. Her son, who remained in Ann Arbor with her ex-husband, visited her twice during this time.
Then she spent some time house hunting (one of us Moldies' least favorite activities) and found a townhouse that felt great to her. My understanding is that her son is moving in with her permanently in a week or two.
She reports that while she is not 100% well, she is doing far better. Her main symptom at this point is POTS — while she can go out for a number of hours during the day, she feels better if she can remain lying down the majority of the time.
I am keeping my fingers crossed for her.
This person got lucky that a Moldie was willing to take her into a good home and help her choose a good hotel, rather than going tent camping, for her "sabbatical."
But even if she had gone tent camping, the goal would have been the same: Get to a really great place so that you know what "pristine" feels like and see if you make improvements, then use that knowledge to go back and choose a good location in civilization.
If you skip getting to a super-good place upfront, you're wandering blind forever.
Here's a comment that this woman wrote to me a couple of weeks ago. I like it because it's consistent with Erik's conception (learned in the military) that people don't need to know what they're avoiding in order to be successful avoiders.
"I am beginning to realize that I am sensitive to all KINDS of ick, including the ick that emanates from the energies of confused people. As I said, I'm not always sure what about a place or location doesn't work for me, but I'm clear that I need to move on."
My main goal in writing about this topic here is to get researchers and doctors to study this phenomenon.
Until that happens, all that any of us can do is to get to a place that's really clear, find out what "good" feels like for us, and then seek that out as much as we can regardless of where we go.
Best,
Lisa Petrison, Ph.D.
lisapetrison at yahoo
>Funny. My illness went from bad to awful in this very same Boulder, CO, which seems to have a penchant for a higher than normal MS population per capita. I spent a lot of time outdoors too, but never noticed a difference in terms of symptomology. I would imagine mold, VOCs, chemicals, and other pathogens all can evoke "sickness behavior," but perhaps XMRV is the common denominator that allows it to be so.
Dr. Decker-Jones, if you would be so kind, what are your best sleep remedy ideas?
>I have a high H&H, elevated MCV and high CO2. My doctor calls it a smoker's pattern, but I have never smoked. I desat. at night and used O2 in the past until insurance refused to pay anymore.
I don't have a clue why there is an O2 problem, but I am always SOB. High altitude makes my SOB extreme. It took about a month to adjust to the altitude. I would love to try HBOT, but it is cost prohibitive.
I sympathize with Ali too. MCS is so difficult to live with. I have had extreme phases where I could not go into a store because of the smells. I think you are right, Jamie about it being similar to seizures. There are times when I feel as if it is a small seizure from neuronal overactivity. The sensitivity to sound, light, smell and touch is so hard to explain to others.
Keep up the good work and I look forward to the WPI opening. We need a center dedicated to helping us that really understands.
Thanks so much, Ann
>Jamie Deckoff-Jones MD said…
Erik,
The idea that you improved your cellular hypoxia with hypobaria makes no sense to me. You are postulating that you are a facultative anaerobe:). Much more likely is that you improved from exercise, which was possible by virtue of avoiding triggers, and epo, which is antiiflammatory and produced when going to altitude.
———-
Jamie, you know from our past discussions and from Dr Shoemakers books "Going to the Erythropoietin Heights" that exploiting altitude shift is part of the "effect" to induce pulse release of EPO.
But I am not postulating being an alien life form. Dr Cheney's theory the outward signs of CFS may actually be protective state against heart failure makes sense to me.
By damping down inflammatory response through "avoidance" and inducing pulse release of EPO, I am effectively "resetting" my threshold of oxygen uptake for a more favorable level.
Dr Shoemaker is the only doctor I have found who can repeat the parameters of this effect back to me in a way that makes sense.
I stumbled over it, but Dr Shoemaker understands it.
>>Funny. My illness went from bad to awful in this very same Boulder, CO, which seems to have a penchant for a higher than normal MS population per capita. I spent a lot of time outdoors too, but never noticed a difference in terms of symptomology. I would imagine mold, VOCs, chemicals, and other pathogens all can evoke "sickness behavior," but perhaps XMRV is the common denominator that allows it to be so.
Yep, it's hard to know.
There could be something in the outside air in Boulder that bothers you, but that doesn't bother some other people with ME/CFS.
You could be living in a small area of Boulder that is particularly bad. (Even Kansas — a generally great state — has certain places that are very bad.)
You could be especially reactive, and need a more pristine environment to do well.
You could be living in a bad home.
You could be living with possessions contaminated elsewhere.
You could be not affected by biotoxins at all. (I've yet to find anyone who's concluded they weren't reactive after doing the test according to Erik's instructions, but it's certainly possible that some people with ME/CFS are not reactive since no researchers have yet done any systematic study using the scientific method to see.)
Until people get clear in a really good place, without contaminated possessions, it's impossible to know which of these might be the case.
And while I have much enjoyed traveling around to different places and scoping out people's dwellings, there's only so much of it that I can do.
If this effect were easy to understand, people would have figured it out long ago.
For those interested in doing the test, Erik's instructions are compiled in book form. Please write me for a copy.
We all can speculate on the mechanisms for why reactivities occur, and how such reactivities might be associated with XMRV, but until researchers start to put systematic work into it, it's just guesswork.
Best,
Lisa Petrison, Ph.D.
lisapetrison at yahoo
>Lisa, to be fair, I was "pushing" my limits while living in Boulder, as it offers so many opportunities to do so. But I really crashed there and just had really bad karma there for some reason.
Erik, I agree about the EPO stimulation, as well as VEGF, and that much of the downregulation of organ systems in CFIDS is deliberate compensation for a body that is compromised in oxygen handling, from the lack of desaturation, to the lack of perfusion, to OI and low blood pressure. It's almost as though our bodies don't want oxygen because they can't properly handle its metabolism, though resetting the system makes sense.
>On our bodies not wanting oxygen, this is from a 2009 summary of a presentation by Paul Cheney, written by Sarah Myhill M.D.:
>Oxygen is clearly vital for efficient aerobic metabolism. It allows us as human beings to function at speed and this has massive evolutionary advantages. However, if we cannot handle oxygen this would result in massive pro-oxidant stress and we would quickly collapse and die. So what we actually do when we cannot handle oxygen is that we switch back into safe but slow anaerobic metabolism and hope that our body can repair its antioxidant defences quickly so that we can get back to normal life again. Almost certainly this is the mechanism of fatigue after any exertion whether that be the normal exertion of daily life, an acute illness, acute physical exertion, or whatever. Essentially if we cannot handle oxygen we switch back into safe, but slow anaerobic metabolism and effectively we mimic life as a foetus. As I say we have to do this because if we do not recover our antioxidant defences we die from oxygen toxicity! One example of how toxic oxygen can be – if you give 100% oxygen to a new born baby they will quickly go blind.
Biotoxins create lots of oxidative stress. That's their main mechanism of toxicity.
Perhaps ME/CFS is partly a result of our bodies' ability to operate with less oxygen, as a functional mechanism to produce less damage under conditions of high biotoxin exposure.
What sorts of damage might occur if a person did not have that ability?
Cheney suggested heart damage, such as the kind that he himself experienced (and that forced him to get a heart transplant).
That's the sort of damage that wouldn't necessarily be immediately noticeable, but which could have a long-term effect just the same.
If Biotoxins + Oxygen = Damage, one way to resolve the problem is to decrease the oxygen. This definitely has a downside though.
I would like to suggest that decreasing the biotoxins may be a better choice.
>Jamie, what is interesting is that my grandfather moved to Lake Tahoe from the Bay Area and felt better. This after an occurrence of 'post-polio syndrome' in the early 1970s. He got an 'atypical polio' during the 5 country outbreak including Santa Clara County in 1934 during which his father died in O'Connors Sanitarium Hospital in February at the height of the outbreak.
This made famous by the Los Angeles Community Hospital outbreak of some 800 staff, many who did not recover and some 200+ nurses were give hysterectomies as a 'cure.' Since it was not a cure and they remained disabled, they filed and won a multi-million dollar lawsuit in 1938. This is why this ‘outbreak’ is famous.
While my grandfather seemed to do better at elevation, his health was still problematic, including neuroimmune issues, and cardiomyopathy, he may have even been a patient of the Internists at Lake Tahoe, Peterson and Cheney. By 1984, my grandmother was put on oxygen as she was having issues with high altitude. Some time during the late 70s or early 80s my father and I made one of our visits and both became very ill with severe flu like illness that would not go away for months, returning home, my mother became ill as well. My grandparents move close to us, as my dad’s health was in decline, my grandmother did better at sea level (my grandfather did not).
My grandfather died of cardiomyopathy in 1987, my father had MCS and environmental asthma and immune issues, as well as reoccurring high EBV titers as did I. My father died of Cardiomyopathy in 1989. My mothers decline took longer, involving neuropathies, fibromyalgia, shingles, and multiple infections, she has had a classic SPECT and MRI scans but local physicians all interpretate her Dx differently without consensus (needless to say there isn’t a single ME (cfs) doctor in the state). One doctor suggested she had some ‘unknown encephalopathy.’ She is now in a care facility. I have had a positive test for XMRV but have not gotten other family members tested. Except for that XMRV test I have an ‘inadequate workup’ to validate my illness status and acquire disability or any other benefits.
It seems a frustration of trying to make sense of what treatment/testing could help; yet realizing even the simplest ones are out of reach. There NEEDS to be a way to validate the illness to the bureaucrats or we might as well begin planning our funerals now. Or at least what bridge we can camp under.
>My understanding from Erik (and he can correct me if I'm wrong) is that the outdoor biotoxin that seems to be particularly problematic to many of us with ME/CFS first appeared in Lake Tahoe in substantial quantity in 1984, just prior to the epidemic reported there by Cheney and Peterson.
He says that he encountered this particular toxin nearer to the coast, in the Bay Area, starting in 1980.
This seems fairly consistent with your timetable, doesn't it?
>The "Good day / Bad day" effect couldn't exist unless CFSers were capable of a fairly sudden shift in redox.
The trick is to find out what controls this shift, and then control it!
>I agree, Erik. Incorporate the things which increase stability into your life.
Jamie
>Jamie, as you know from our years of communication in that old group we were in, that's precisely what I did and continue to do.
Dr Shoemaker described this in two of his books and he has documented thousands of cases, so it's quite clear that I am far from being an isolated fluke.
Now I'm primarily exploring the incredible counterproductive intensity of the "Disinterest Response.
People should be aware that their firm conviction that "If somebody found something that helped, everyone would know it" is completely wrong and backwards.
The reality is that this axiom is completely undermined and demolished by the sheer universality of its inherent corollary:
"Since everyone doesn't already know it, your theory cannot be true"
>One thought:
I had problems with what I thought was paresthesia. I found out that it was caused in me by potatoes (probably the glyco-alkaloids). If this is the same problem, maybe it is the same cause. Maybe getting rid of nightshades might alleviate the MCS? That is something one could try, for at least a week, maybe longer. If it is the cause, one should feel it after a couple of weeks. If nothing changes, then nightshades are innocent…