What treatments have CURED people?

[sela]

slaya, or whoever,
is there a place one can camp cheaply in the western us that is healthy and close enough to decent food supplies? i am willing to experiment with this.

 

[taniaaust1]

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

Take care. That is how i ended up completely bedridden for 9mths unable to look after myself and then severely ill for years. Pushing youself can only make this worst and if you want to get better.. you really do need to do the opposite and cut back on things before the CFS/ME (if its that).. forces you to do so. It was the studying and exams which was the final thing which done me in. Ive heard of quite a fw others say the same.. stress of exams and study can be the final straw on the sick camels back!

 

[maryb]

Lisa thanks so much for the info. It is a real possibility that I will get to the USA to see one of the top docs and would be prepared to stay for as long as needed so I may well need some more advice.

 

[Rockt]

"It is a real possibility that I will get to the USA to see one of the top docs"

Not being sarcastic, but IS there a top doc in the US that can do anything to help?

 

[Rockt]

"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"

Binky, PM'd you.

 

[Frankie Dene]

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/

Thanks for that info nventor - will certainly look into it - half the price!

 

[ukme]

Don't work the 50 hour week for starters. Start pacing your day. Don't eat anything that is full of junk. Don't take B12 or anything else unless tests show you need to. It might be mold it might be something else, everyone with this is different there is no size fits all. Test test test and then you know what you are dealing with and can start fighting it. In the UK we have no doctors who are ME specialists but there is a lot you can find out on the internet. My kid is not cured but I have got her a whole lot better through knowing what I am fighting and informing myself about how to deal with it. Above all Binky stay positive and don't you ever give up.

 

[Tony]

I agree that there is no one size fits all. But B12 isn't often used in ME/CFS because of a deficiency shown by a blood test. Much more often B12 is used as it is a scavenger of nitric oxide. It is generally (there are always exceptions) very safe and can be started at a very low dose and raised as tolerated. For improving cognition I wouldn't be without it and find the hydroxycobalamin form excellent.

 

[Chris]

Hi; with all this discussion of mould, can I add another potential stressor? I have been learning about electromagnetic radiation--cell phone towers, etc. etc; recently, I rented a Steltzer meter and checked the levels of high frequency electro pollution in my apt's circuits--I live in a high rise building in Victoria topped by a forest of spiky and circular emitters. The levels were very high indeed--around 400 (20 is recommended!). I bought some Steltzer filters, which brought the levels down to around 70--major improvement, though by no means ideal. That seemed to bring some modest improvement in my state, and I am now looking for an apt in a part of town without such towers nearby.
I did recently manage to stay for three days and nights in an electronically much quieter area, and felt more peaceful and generally better. My hunch is that part of the improvement recorded by some moves to camping in the desert kind of thing may be due to the reduction in RF pollution, as well as mould--I don't want to disagree with the effects of mould, but just point out that other factors may be involved. You could read Camilla Rees and Magda Havas book, "Public Health SOS: The Shadow Side of the Wireless Revolution" for an update on the warnings in Robert Becker's earlier and fascinating book, "Cross Currents."

Best, Chris

 

[aquariusgirl]

attn Mary

Mary,
I'm with rockt. What top doc?
i've consulted with chia, lapp and joe brewer in Missouri.
All nice guys.
But no silver bullet & the cost of testing if you pay out of pocket.. is going to be enormous....

 

[markmc20001]

slaya, or whoever,
is there a place one can camp cheaply in the western us that is healthy and close enough to decent food supplies? i am willing to experiment with this.

Slaya and sela. I recently lived in a place called "lake county" california. You probably already know of it Sela because it is close to Marin. One place in particular is "Harbin Hot Springs" whihc has camping or hotels rooms. People I havea talked to about the springs, claim it makes them feel great. I haven't been myself.

They have camping and a community kitchen. They have yoga classes and all kinds of massage and stuff going on.

ANyways, lake county has the cleanest air in the the state. The place I lived in an walnut orchard actually had healthy frogs everywhere. Frogs are supposed to be very sensitive to toxic environments, so apparently some places are very clean there.

LIke any remote and clean location, it has problems. One things about lake county is unemplyment is high, and some folks are are in bad shape. However, you can find all spectrums of the income ans social classes living there. ANother thing is they have alot of this marijuana growing up there which makes for other problems. If you stay out of the way of the pot farmers and law, you will do fine.

http://www.harbin.org/

 

[markmc20001]

another healthy way to live

One of the places I felt best was in mexico. In cozumel to be exact. I was doing a CAPS protocol at the time and thought I was going to die on my way down there. I basically collapsed when I got there and was afriad I might not make it home. However the sunshine, salt water snorkeling did wonders for my health. I felt if I could live there without working, I would certainly go into remission. I reccomend giving it a try to anyone who can swim and feels toxic.

It costs about $70 a day to be on a killer beach at an all inclusive resort where you can eat good food, swim, and sunbath. best therapy there is.

 

[Misfit Toy]

I think one of the things that cure people is actually their body. It depends on their body, genetics, etc. I had one friend who had CFS from pesticide poisoning. He also had viruses. What cured him...and he is CURED, was rest. Rest, milk thistle, organic foods only and being so diligent.

Having said that, I am sure a number of people have done the same thing and well, they are still sick. So it's such an individual process.

 

[sela]

i have been to harbin many times. financial crash wiped me out just about so no more harbin. another great ca place is saline valley. but i was thinking of a place that was DIRT cheap that i could stay for months. mexico would be okay if could find a place for $20 a day.

 

[slayadragon]

Those of you who have been to Harbin: did you feel good there?

I really like hot springs and thought of going there myself, but then I got nervous about all of northern California and decided to skip it.

People talk about Harbin a lot though. Combination of a religious retreat, heath spa and gay pickup place, some say.

I highly advise avoiding its sister resort, Sierraville Hot Springs near Truckee, CA. There's some very, very bad biotoxin stuff in the woods there. I got sicker than I ever was previously in my life.

EMF's have bothered me from time to time, but it's a different sensation than the mold.

Some say that EMF's make the molds put out more toxins or worse toxins though.

 

[sela]

i loved harbin, it is very relaxing and has great water. there is a kitchen so you can bring your own food, or go the restaurant. i didn't notice the gay pickups but i had my nose in my book. there are a lot of hippies. there is great yoga, movies at night, no cell phones or music is allowed. the only problem i had with it were children. but if you go during the week , there are less kids.

 

[slayadragon]

It sounds like it must have good air then, if you liked it that much. If I get to that area again, I definitely will give it a try. It would be nice to be able to have that as a "good place" that people can go when they're trying to get clear for a while.

Lisa

 

[markmc20001]

harbin

Harbin has a program where you can camp for free if you work there I think. I knew one lady who did massage or something else part time and moved into a community house with a bunch of folks. I guess work may be out of the question for some.

Now that I think about it sela, I think you can camp for free in any national forest. So state campgrounds charge money, but the forest does not.

If you could meet somebody like minded that would let you camp on some acerage; that might be ideal. Many of the folks around have similar helath needs and may be open to the camping situation.

Maybe ask here for more ideas...
http://www.mcs-america.org/index_files/MCShousing.htm

 

[soulfeast]

What about Colorado or eastern Washington state where the air is arid or Idaho.. also arid.

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.

 

[dipic]

Isn't this virtually the same topic but with a much more ridiculous (or at the very least ridiculously worded) question/title as this thread: http://www.forums.aboutmecfs.org/showthread.php?6197-What-treatments-HAVE-ACTUALLY-helped/

Even in the same subforum.

Sorry, Chris (the original poster) - as someone who is almost the same age (I'm 22) and have already lost enough years of his life to the illness, I would love a cure too and can also deeply empathize (although I would love to be as "well" as you currently are!) Unfortunately, it's extremely unlikely we'll find one, perhaps even in our lifetimes. Of course with the rate the science progresses *ahem* at least when politics aren't interfering, I, nor anyone else, can say for certain.

I recently underwent stem cell therapy (there is a thread in this section discussing it's use in ME/CFS), and am about one month in. Results have yet to be seen but it's been reported that they generally aren't for at least several months afterward. It has done wonders for some. There are a lot of current and emerging treatments that have potential.

As someone who is, again, practically the same age but much more severely ill (to where I have been completely bedridden for the last couple years - you said you can still work, right?), as discouraging as it may seem, know that you are in a good place.

Just... also be realistic. I don't want to say don't look for a cure, but realistically - there is no cure. The most, at this point, you can hope for is a full (or something close to) functional recovery. And again, you are currently standing in a great place for that. You just need to find what works for you (and there are plenty of ideas in this forum and even this thread to aid you in your search for them.)

Best of luck to you,
Ben