What treatments have CURED people?

[urbantravels]

On the contrary, I think "remission" is exactly the right word. "Remission is the state of absence of disease activity in patients with known chronic illness that cannot be cured."

Remission could be the result of something we have done (or not done), but without control groups, it can never be said that something we have done (or not done) brought about that remission. And there is always reporting bias with interventions. People who feel something has helped them or harmed them dramatically are much more likely to volunteer information about what they feel their experience has been. "Eh" or "I dunno" or "It didn't seem to do anything" are not as commonly reported.

A long chain of hypothetical "ifs" here - but if XMRV turns out to be the culprit in CFS (or much/most CFS), if I turn out to be XMRV+ myself (haven't been tested), then I might decide I want to try antiretrovirals - even if I have to pay cash, since we all know HMOs don't like "experimental" treatments. Those are drugs with prodigous side effects. The drug might harm me, might help me, might do nothing in particular for me. It might induce resistance in the bugs, which is a horrifying thought because then I could ruin the potential for that drug to ever help me in the future, if it turns out it should be used in a different dosage or as part of a cocktail.

I wouldn't mind wasting my own money, or even potentially harming myself - I already feel like hell, so what have I got to lose? And I don't have kids or anyone who depends on me. But here's the thing - I would consider my experience wasted if it weren't part of a properly controlled clinical trial. I would rather have my experience be objectively measured and become part of the body of scientific knowledge, whether it's negative, positive, or just "eh." That way my experience actually has the potential to help others, even if it harms me.

 

[slayadragon]

>Remission could be the result of something we have done (or not done), but without control groups, it can never be said that something we have done (or not done) brought about that remission. And there is always reporting bias with interventions. People who feel something has helped them or harmed them dramatically are much more likely to volunteer information about what they feel their experience has been. "Eh" or "I dunno" or "It didn't seem to do anything" are not as commonly reported.


This is where the experience that I and others have had with mold avoidance is so important.

My Ph.D. is in marketing/social psychology from Northwestern University. The bulk of my training was in developing effective experimental designs, so I've thought a lot about the issues raised here.

Usually when people get better subsequent to some intervention, there is a question of whether that intervention actually brought about the improvement.

Without a controlled design, there indeed is no way to tell. It could have been random. It could have been due to a another variable changing that was not given enough weight or recognized. The patient could be making it up.

A design that includes two different groups (a "control group" and an "experimental group") is attempt to overcome that problem.

A second type of controlled design is one called a "quasi-experimental" design. For instance, here is a book written on the topic by a Ph.D. professor of mine, Tom Cook:

http://www.amazon.com/Quasi-Experim...=sr_1_3?ie=UTF8&s=books&qid=1281377058&sr=8-3

One type of quasi experimental design involves time series data. For instance, in one design, a measurement is made. Then an intervention is performed. Then another measurement is made. Then the intervention is withheld, and another measurement is made. And so on.

Insofar as the intervention has only a short-term effect, this is a legitimate research design.

This is precisely the sort of experiment that people engaging in extreme mold avoidance cannot help but do over and over again, as they encounter mold/biotoxins and attempt to avoid them.

If I get a big biotoxin hit, I get sick. If I make a special effort to avoid biotoxins (e.g. staying in a tent in a campground in Kansas), I get and stay well. It would be nice to be well all the time, but living in a tent in Kansas is a high price to pay! So I experiment with doing things that might expose me to mold and refine my skills at avoiding it. I get hit on occasion and feel worse, sometimes I inadvertently get really hit and feel worse, I go back to the tent in Kansas and get better.

Let me repeat this. EVERY TIME I go back to the tent in Kansas, I get better. Every single time. Not just improved, well. Well according to anybody's standards.

So I am convinced that by avoiding biotoxin exposures (or at least, by what I believe to be biotoxin exposures), I can achieve recovery.

This is not a remission, as I define it. I have to do something in particular to be well. It is hard work and (quite frankly) extremely stupid and annoying. But in so doing, I have recovered my health. I don't have CFS symptoms. And I know what caused the recovery of my health to occur.

Following are the objections that I usually get when I tell this story.

1. This could just be your experience. It may not apply to other CFSers.

True. I have no knowledge of how many other CFSers could experience recovery in this way. There have been a number who have reported recovery from exactly the same method, but that doesn't mean that others also would.

2. It could be a placebo effect.

True. If so, I wish that my brain had chosen to fasten on one of the other thousands of things that I've tried in order to address my CFS rather than this one. It would be hard to imagine a placebo effect that would be more trouble.

3. I could be making this up to gain attention for myself or otherwise fool people.

True. This is an awfully lot of trouble to go to gain attention though. It's also cost me a huge amount of money. I've not gotten a penny in return, and thus far I've not discovered any good ways to make large sums of money based in a tent in Kansas either.

4. I could be avoiding something other than biotoxins.

Absolutely true. It would be great if somebody were to do a scientific study figuring out exactly what I am avoiding.

5. Mold/biotoxins are just a trigger. They're not the cause.

Absolutely true. Nobody should have to avoid mold/biotoxins to this extent. Something else major is wrong with me, that I should have to do this. The fact that I can obtain so much wellness just as a result of mold/whatever avoidance is a clue, not a cure. Maybe it's XMRV that's my underlying problem. Maybe it's something else. The fact that mold/whatever is the mechanism by which the "X Factor" exercises its damage and gives me CFS seems to be well worth exploring though. Maybe that would allow us to learn more about how the "X" factor works and thus better address it.

6. If you got well, it means you never had "TrueCFS." You must have not been diagnosed correctly. Obviously you just had a mold allergy to begin with.

I learned this technique from Erik Johnson, who is a member of the original Incline Village cohort. This is the group that the CDC used to define CFS, and that was used in the recent WPI study identifying XMRV. Erik was said by Dr Cheney and Dr Peterson to have the same illness as the others in the cohort in 1985-1988, and Dr Peterson said in 1998 that he still had the illness. My own illness history is described in the "Control Points" thread I mentioned earlier on this thread, and I think it's a pretty good case that I had classic Canadian Criteria CFS/ME as well. In general, the idea that all knowledge in the world is already known to scientists is, in my opinion, antithetical to the idea of scientific inquiry.

7. Nobody else is going to want to live in a tent in the desert. That's not a good way to get well.

No kidding! I'm not saying it's a GOOD way to be well, or that anybody else should do it. I'm just saying that it is a way that has worked, at least for me.

My discussion of it in various forums is mostly designed to draw attention to the phenomenon, so that more research will be done on it.

Hopefully my own experience will lead to more research and possibly clinical trials related to this phenomenon.

For instance, I'd like to see trials on how people who are vs. are not living in really moldy environments do when they get stem cell treatments, or take antivirals or antiretrovirals, or do the Marshall Protocol, or support methylation, or receive Ampligen, or do other things. If I can achieve a high degree of wellness just by avoiding mold scrupulously, perhaps others can achieve wellness by avoiding mold moderately and simultaneously doing other things.

If such experimental designs eventually are developed and carried out, my experience will not have been wasted at all.

Best, Lisa

 

[maryb]

Just out of interest Lisa where would be the best places to live in the USA with regard to mold? (just thinking if I was able to afford a 6 months stay)

 

[LaurelW]

"I went out of Remission when I stopped listening to my body, as I truly thought I was fully over the CFS as I hadn't crashed or got sick in so long.. so what harm can really pushing myself when feeling healthy kind of tired and feeling a little unwell, probably due to a cold or something do?.. "


That's exactly what happened to me--was well for over 4 years, thought I was mostly cured, so went about life like a normal person, only to end up in a big-time crash that after a year have only started to get a bit better from. This made me a firm believer in pacing and being cautious no matter what one feels like.

 

[LaurelW]

I agree with Taniaaust - I too was in 100%remission through pacing and leading a boring life to stop the relapses but I also took isoprinosine.....

I'm so glad it works for you. I tried it for 3.5 months but it made me have such bad muscular pain that I had to quit, which is unfortunate as it takes a long time to work.

 

[Frankie Dene]

I took it for 16 months although at the time I was a lot better - maybe 70%well. I also got a heart medicine around the same time - which stopped my heart racing. What a wonderful feeling for 4 years being well and believed the nightmare was behind me. In reply to dose - that first time I took it for 4 years at 6 per day continually then dropped down to 2 per day after bing 100% for 2-3 years. Started again at 6 immediately I relapsed 16 months ago. I stop during the weekend -as per Nanacy Klimas - periodically for a rest. Have had no probs with gout or bad reaction thank goodness.Have had periods when I felt good again but overdid it each time and relapsed. 7 weeks ago I felt good again and decided to increase my exercise to strengthen up my muscles - bad move and 7 weeks later I'm still really ill.
Dr Vallings is my Dr and she prescribed it for me but won't say that isoprinosine (imunovir in NZ)is the reason I got better as who really knows why! It couod all be coincidence but I'm desperately sticking to my belief it is the reason I became 100%

 

[leaves]

I am taking imunovir for several months now, but cant say there is a big effect, how long did it take for you to work?

 

[Daffodil]

people with "true" CFS will have XMRV or a related retrovirus, i think. people who are sick because of extreme mold exposure or lyme are not true CFS cases, right?

in my opinion, if you got well for a while, something like chemotherapy was targeting XMRV-infected cells or the XMRV became dormant for some reason.

sue

 

[V99]

What if exercise reactivates XMRV?

 

[slayadragon]

people with "true" CFS will have XMRV or a related retrovirus, i think. people who are sick because of extreme mold exposure or lyme are not true CFS cases, right?

in my opinion, if you got well for a while, something like chemotherapy was targeting XMRV-infected cells or the XMRV became dormant for some reason.

sue

Mold exposures exercise their toxic effects primarily by inflammation and oxidative stress. They also have big effects on the immune system. The hormonal system releases cortisol in order to protect itself from the exposures.

Judy Mikovits suggests that cortisol and inflammation are two factors that cause XMRV to (re-) activate. Immune system dysregulation would do that as well.

Thus, it seems wholly reasonable that toxic mold exposures would be a major factor that might cause the virus to get out of control.

Conversely, the viral activity seems to magnify the effects of the mold on the system. We all know that oxidative stress is a big deal in this disease. Thus, substances that exercise their toxicity through oxidative stress (such as biotoxins, also other uncommonly encountered chemicals such as phosphine and naphthalene) logically would have a disproportionately large effect on us.

Cheney discusses how downstream mechanisms in CFS cause the shutdown of the methylation/glutathione and P450 enzyme systems. The ability of the system to properly eliminate mold exposures (and other toxic exposures) thus is compromised. If mold exposures are high, the toxic burden in the system will build up quickly, thus causing further declines.

This is a complicated disease. Suggesting that if people have mold as an issue they can't also have XMRV is really simplistic. It's more likely that it's the synergy between the two that's the killer.

And as I suggested earlier, with regard to Erik (the Incline Village CDC prototype from the WPI XMRV study), there are three choices:

1) He was misdiagnosed in 1987 by Cheney, in 1997 by Peterson, and in 2009 by Mikovits.

2) He's lying his ass off about the mold

3) Both mold and XMRV were factors for him, in his classic Canadian Criteria definitional-prototype CFS (aka ME).

Best, Lisa

 

[Binky123]

Thanks to all of you for your replies, although they are not terribly encouraging (CFS isn't a very encouraging disease). I have had CFS since age 19, but refuse to believe that my life is over.

Fatigue is not as much of an issue for me as is brain fog. I'm able to perform physically, but my head just feels so full and heavy ALL the time.

Regards...

C

 

[Mya Symons]

Less Sleep Makes Me More Normal

I was doing well on a group of supplements at one point. I was talking fat buring lipotropics, pyruvate, magnesium and malic acid, flax seed oil, a multivitamin and Vitamin D. For about a year things were great, but then it seemed to go back to the way things were before.

This is going to sound strange, but I do much better on less sleep. For example, I work 4 days a week. I find if I get no more than 6 or 7 hours of sleep on those days and then go to work I function much better. I then sleep more on the weekend. I really believe that people with CFS do not repair the way others do at night. Further, it might be possible that if we have a virus it replicates while we are sleeping. As long as I do not go over 6 or 7 hours of sleep each night during the week, I can somewhat function like a normal human being during the week.

 

[Frankie Dene]

I am taking imunovir for several months now, but cant say there is a big effect, how long did it take for you to work?

I felt it was 16 months before I knew I could do stuff without having a relapse - I still took it easy for 6 months after that but then went to the gym etc and had many physical and mental stresses that I seemed able to cope with. It was so expensive after 2 years well I thought I'd be ok on 2, and Dr thought so too but told me not to go off it completely. I have been back on it 16 months (6per day)now and it is certainly taking longer this time. I do all the right things though - good sleep with amytriptiline, 3 meditation and rests per day - use a wheelchair and limit walks to kitchen to 5/6 per day, I take Vit B 12 injections every 5th day, cimetidine, undenatured whey, magnesium, olive oil. 7 weeks ago I was driving to friends doing light housework and small walks. Exercised with stretchy bands to build up my arm muscles 3 days in a row and wham back to bed etc. I'm very much affected negatively by exercise all thru this illness. Unfortunately it, imunovir, is known to take ages and does, so, if it doesn't work it has been a very expensive year or more ie (NZ$12 per day).

 

[slayadragon]

Just out of interest Lisa where would be the best places to live in the USA with regard to mold? (just thinking if I was able to afford a 6 months stay)

Mostly scattered places rather than whole states/regions. Few cities are very good, but some are okay. Kansas, Nevada and southern Utah (outside of the big cities in all those places) are pretty good. Parts of Arizona (not Tucson/Phoenix) are pretty good. Most of Wyoming seemed okay (though there's oil drilling, also very cold). Possibly Minnesota, Nebraska, SD, ND, Montana would be okay. Small sections of other states as well. New Mexico's not nearly as good as you'd think.

If you really decide to come, let me know and we can discuss in more detail.

 

[nventor]

is imunovir cheaper for you at goldpharma? I pay about $75.00US for 120 (one month, weekends off) 500mg including shipping to the
states.
http://goldpharma.com/login/

 

[willow]

I have had CFS since age 19, but refuse to believe that my life is over.

Too right! You're young and with more powers of healing than a long termer like me. Like you more of my problems are brain and other neuro rather than physical and remarkably my neuro function is improving. I'll never give up.

A friend of a friend at University woke up one morning and simply felt very different. She knew 'it' was gone. She used very basic supplements. pacing, good diet and other straight forward things.

My health practitioner was ill for I think 11 years. She says she was almost wheelchair bound, she lost her job (college head), her long term relationship etc. Her first big wow was supplements guided by kinesiology, then the true breakthrough with something called Field Control Therapy which you can google. (Be warned there's a couple of not so good stories about it on the forum but it's helping me, maybe becuase I argue and refuse to do anything that feels wrong for my body.) It was a gradual process but for 5 years or more she's worked as a kinesiologist and FCT practitioner, also renovates houses mostly by herself and is a landscape architect, has a full social life and home life and unfortunately seems to have forgotten some of what it's like to be very ill. The last bit, forgetting what it's like to be so very ill, says it all to me!! She's told me she still has a Blasto infection and a few days when she feels a bit iffy but is still healthier than many people who've never had ME and think they're healthy (if you get my drift).

I'm sure you know that pacing, healthy food and lifestyle are very important too but for me that's not enough, it's almost like my body has no concept of health to return too..... I seem to be working on that but too early to know for sure. And of course finding ways to enjoy aspects of the life you have now rather than putting off pleasure and laughter until you are healthy is very important.

 

[Binky123]

Great post willow, thank you so much. It's exactly as you said, I am young and have LOTS of time, and I need to try my best to fully recover.

The Field Control Therapy does sound a little hokey to me though . Toxic mold exposure is another disagnosis I am skeptical of, although I did feel very well during a brief stay in a hotel in Arizona (Phoenix).

Probably I am facing right now is it's difficult to pace.... I work a 40+ (often 50+) hour job in consulting, am studying for certification exams, and my girlfriend doesn't really understand (although she tries).

Love you all,

C

 

[Victoria]

And of course finding ways to enjoy aspects of the life you have now rather than putting off pleasure and laughter until you are healthy is very important.

Willow,
You are so right in your statement here.

After 30 years of nearly constant pain & the last 15 years of other chronic health problems, I'm making the best of what I've got now.

I love my life (now I'm not working).

I go to bed when I want (often late). I stay in bed until I feel fully rested. I leisurely answer my emails over a cup of herbal tea when I get up. Make breakfast midmorning. Do a bit more reading or tidying up. Then a long soak in a hot bath & get dressed around midday. Have a rest, then around 1 or 2pm go for a long slow walk (with my camera in my pocket). Take photos in the Botanic gardens or walk along the beach (notice that I'm slowly, leisurely walking, taking in the scenery - no crowds, no loud noise except that of nature, no bright lights). Then I come back late afternoon, check out the internet & then make a leisurely dinner (rarely have lunch) & watch a movie or edit photos & then to bed.

I do what I want, whenever I want.

I pace my day, try to keep calm & at peace with myself & my life. I don't care what anybody says or thinks. It's my life & I enjoy what I do now.

I just enjoy each moment for what it is. If my pain levels are up, I watch a funny movie or do something else enjoyable to distract myself.

And I've even been known to stay in my PJ's all day if it's too cold & rainy outside to go for a walk.

I quite like my own company (or the occasional chat with a stranger strolling through the Botanic Gardens).

I smile at the antics of toddlers with their Mothers (or Fathers) playing in the sand. I laugh at the antics of the swans & ducks on the lake. I really take in nature & all that is beautiful around me. I really smell the crispness of the sea air. I really appreciate the time to rest when I need it. I still occasionally curse when my back pain is bad, but those episodes are getter fewer & fewer as time goes by (now I'm not working in an office filled with constant pain & exhaustion).

Nothing is nicer or more relaxing than sitting on the pier down the beach eating fresh fish & chips watching the waves rolling in to shore & feeling the sun on my back. Even walking along the promenade next to the sand, feeling the wind in my hair & listening to the seagulls swooping & squawking is enjoyable.

It's so nice to accept what is unchangeable, and make the most of the life you have.

My life is not perfect, but then who has a perfect life when healthy. I have pain most days, but now that I can manage to get out walking for a while in the fresh air, I can deal with the "ups" and "downs" of chronic ill health.

Being in control of your day & letting go of anger & frustration is immensely uplifting.

But I DO sympathise with young CFS sufferers who have not experienced life, careers & overseas travel like I have in my youth.

 

[taniaaust1]

http://aboutmecfs.org/Trt/Isoprinosine.aspx Garcia, that link may interest you, it talks about dosages in CFS/ME

I would be hard-pressed to use the word "remission" too. That suggests that all the symptoms are totally gone and that nothing ongoing needs to be done to maintain health. When a cancer goes into remission, it means it might come back but there is no sign and people don't need to do anything special except live a healthy lifestyle. I've not heard of anyone with Canadian Criteria CFS/ME who's gotten to that point.

My remission was to the point where i was living life like a normal person and not worrying about the CFS/ME at all, working as a gardener and cleaning/mucking out stables (hard physical work and wasnt sick or tired). I must admit that i wasnt working full time as I just didnt have the work, but I was almost doing fulltime eg 34 hrs a week heavy physical work.. and with a non active job i had, I as doing over 50 hrs per week (one week i did 56 hrs work).

I have canadian consensus definition ME. Thou as my post stated above.. i didnt last in that remission state for long.. 2-3 years before i crashed again from doing that (This crash may of came about due to mold infestation in house which I didnt know about at time, thou i put it down to pressing myself too much after i came down with a virus).

But for some.. who lead a less stressful and less hectic life than me, who knows, it may be possible. Just like luck held out with us till we reached a certain age and got ill. I think I was predisposed to this illness for over 15 years in the first place before I got it.

Maybe it is all a matter of luck again with still being very susceptable, when it comes to that point ... like a ticking bomb which can end up going off again

 

[taniaaust1]

Thanks to all of you for your replies, although they are not terribly encouraging (CFS isn't a very encouraging disease). I have had CFS since age 19, but refuse to believe that my life is over.

Fatigue is not as much of an issue for me as is brain fog. I'm able to perform physically, but my head just feels so full and heavy ALL the time.

Regards...

C

Blinky.. if you havent, i suggest you give B12 injections a trial. They often target the brain CFS symptoms. Without them.. my brain is no good at all.

Another thing i found good for the brain symptoms was jucing and fresh juice short fasts.... fresh fruits. Celery, apple, beetroot and carrot.. umm i think with a touch of caynenne pepper?? or it could of been nutmeg?? helped my brain. I suggest to experiment with different kinds of freshly done juices (as i found some didnt help. while another combination did.. i couldnt work out exactly what ingrediant in the combination i was juicing for some reason helped)... celery?? beetroot or the spice i used??

Freshly juiced wheat grass.. that also seemed to help me a little. (add to a touch of pineapple juice so it's drinkable).