1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
The Chronic Fatigue Initiative and Interview with Mady Hornig
In a follow-up article to the recent IACFS/ME conference presentation in San Francisco, and after speaking at length with Dr. Mady Hornig, 'searcher' delves deeper into the impressive work being completed by the Chronic Fatigue Initiative, and focuses in on those cytokine results ...
Discuss the article on the Forums.

Is getting well about money????

Discussion in 'Finances, Work, and Disability' started by m1she11e, Dec 28, 2009.

  1. m1she11e

    m1she11e Senior Member

    Messages:
    307
    Likes:
    86
    Florida
    Over the years I have really struggled with this issue. Although I have spent hundreds of thousands of dollars on a trial of supplements, therapies and tests, they have been a little here and there.

    I am not complaining. In general, chronic illness (28 years of being sick personally) is not conducive for making big bank. Well, actually I am complaining but I understand I am one of many out there struggling and am not whining!

    So, we hear of Mike's success, but even if we had Joey's CIA like skills and could find this doc, most could not afford the treatment. Cheney and his stem cells are in the same ball park. Even working with "Bob, the naturopath up the road" and taking all the test (not covered by insurance) and sticking with a protocol for a period of time is thousands of dollars.

    Many hours of research lands me in a place that I feel it is hopeless, UNLESS I had more money.

    Anyone else feel this way? It is not a healthy place to be and I have tried to "release" it. I have EFT'd it and tried to STOP, STOP, STOP it. It is just so damned frustrating. :mad:
  2. _Kim_

    _Kim_ Guest

    Only if your name is Andrea Whittemore.
  3. Suzy

    Suzy Guest

    I feel the same way as you. I have NOT spent much money on test/supps over the years and am glad I didnt', because the information available now (Myhills protocol, Rich V, Marty Pall) has come along since and I didn't want to be broke when better info came along. And I have heard of people spending hundreds of thousands and still sick.

    I think, though, if I had no money, I would skip the tests and do diet and basic supps to control oxidative stress and work on mito issues. Still would be a couple hun a month , I'm sure.

    Having said that, one of the recovery stories I personally know was a man on social assistance who recovered iwht monthly DMPS and B12 shots and carrot juice and a few supps.


  4. m1she11e

    m1she11e Senior Member

    Messages:
    307
    Likes:
    86
    Florida
    cheap recovery...

    Thanks Suzy, that is the kind of story that gives me hope.

    I also have always done best when I have focused on my diet. I do best with lots of raw and juicing. I have not been healed by it but have given up on it too easily.

    More "got well without spending a ton of money stories"please...;):)!!!!
  5. Finch

    Finch Down With the Sickness

    Messages:
    326
    Likes:
    6
    m1che11e,

    This does not answer your plea for how to get well without money, but I've been thinking about this lately.

    Does anyone know of any other illness that is so expensive if you do choose to try to treat it?

    Our doctors cannot accept insurance because they treat outside of the box, or we have to travel hundreds of miles to find a doctor who understands ME/CFS at all. Our treatments are hit and miss, shot in the dark, and also not covered by insurance.

    Just keeping up our main supplements, sleep aids, or whatever we need to keep going (or not) is expensive. Buying a juicer and the vegetables to make all that juice is expensive!

    And I'm sure I haven't thought of everything.

    I know a lot of people who are living with ME/CFS don't have enough money to even eat properly, let alone buy expensive supplements or go for expensive treatments.

    And with all those treatments, there is no guarantee of even feeling better, let alone being cured. Also, what might help us feel better for awhile can stop helping at any time.

    Every so often, I think about just quitting all the treatments and just letting the ME/CFS be whatever it will be. I'm not sure it would make any difference.

    Why does this disease cost so much? I'm sorry, but what you said reminded me of all this that I've been thinking about so much lately. I don't know how much money I've spent. I don't even want to try to figure it out, because I don't want think it was all a waste, but it also hasn't given me much improvement, if any.
  6. Jody

    Jody Senior Member

    Messages:
    3,942
    Likes:
    450
    Canada
    M1shelle,

    For what it's worth, I'm one who lives on very little money, and have had quite a bit of improvement.

    Never had the money to be able to look into the more expensive stuff and I think now that was a good thing in my case.

    I do use a few supplements, but they are the less pricey things like omega 3 oil and Vitamin D. I have had the good fortune to have had access to a naturopath that my mother helped me pay for. But most of what I've learned from her has been inexpensive stuff.

    The biggest things have been taking a couple of supplements over a long period of time and sticking as much as I can afford to a low carb diet that reduces my symptoms. Pacing myself and not overdoing energy expenditure.

    I am much healthier now than I was say 3 years ago -- less pain, less exhaustion, less neurological symptoms, less brain fog ... my brain works alot better than it used to.

    I expect to be completely recovered one day. And it will be from the inexpensive treatments ultimately.
  7. xchocoholic

    xchocoholic Senior Member

    Messages:
    2,556
    Likes:
    1,189
    Florida
    It would be nice if we could count on the "expensive" treatments to work more often but since they don't, I have to believe that my "cheap" treatments will work someday too. All the stories about dietary intervention helping is sooooo encouraging ... :)

    I'm still struggling with fatigue upon exertion issues, but I feel 100 times better now than I did from when I got sick in 1990 till June, 2005 and mostly just by changing my diet to a Paleo type diet with mostly veggies, meats and fruits. Meats and leafy greens are a necessity at this point. I feel like crap without them. I never could tolerate juicing ... Following a low oxalate diet to avoid kidney stones and vulvodynia and a low carb diet to avoid glucose spikes is critical for me too. Yeah, I'm a mess ... ;)

    I've only been experimenting with supplements for the last year but at this point it seems like the best ones for me are probiotics, a candida control supplement, chelated minerals, essential aminos and sleep aminos ... Oh and I've been getting my B's from Emergenc because I get UTIs from all the other B complexes I've tried.

    FWIW. I have over 40 supplements in house that I was told were "Absolute necessities" for CFS, but honestly I feel better when I don't take most of them. I don't think my liver can handle all the supplements we're told to take. Anyone else feel this way ? My nutrient levels looked pretty good according to my labs now, so I'm just trying to figure out which ones I really need to be spending my money on. Aren't we all ? :rolleyes:

    BJ's has some good prices on natural meats, esp fish, if anyone is interested.
  8. iofiel

    iofiel Guest

    I was just questioning this myself, as I was recently introduced to an institute for CFS in Florida, however the charge for the initial consultation is around 3k - which is not covered by insurance (I do not understand this, but I am sure there is a loophole).


    As grateful as I am that someone is specializing in the research/possible cure, I am rather chagrined at the price tag to try and receive treatment for it.

    Why aren't the insurance companies being more helpful?
    :(
  9. Kati

    Kati Patient in training

    Messages:
    1,829
    Likes:
    899
    Rich or poor, we are all in the same boat, which is sick. Some people may have spent thousands of dollars in their treatments, testings and doctors, but they're still here, sick.

    Today I was thinking that peer medecine could be something to consider as being valid. After all, being newly sick and not getting any better this year, I hit on the forums and got educated. I have learnt about push crash, the canadian consensus, the recent research, the symptoms, and OI, amongst other things. I think I am more knowledgeable than my family dr (in fact I have asked her to do the testing whcih she would have never done by herself- thyroid, cortisol, rule out rheumy diseases for instance) and certainly have the knowledge to stand up to my disability insurance company.

    Peer medecine is still free, and while it may not cure me, at least I believe it prevented me from going from bad to worse.
  10. m1she11e

    m1she11e Senior Member

    Messages:
    307
    Likes:
    86
    Florida
    money and health

    All the replies makes sense. I wonder if I could get to the best specialists, get "on going treatments" (I usually cannot afford the 2 treatments a week for 4 months or 4 years...:rolleyes:) and have access to the best of the best, if it would make a difference. I think it would make some difference.

    There was a time a few years back I had a man in my life and could go to any doctor I wanted. I had been researching my whole life so I thought I knew my wish list. When it came down to it I just didnt know where I wanted to go.
    This man who would help had money but I didnt want to waste it either.

    As some one pointed out about a clinic in Florida that is 3k to start (I think)... Then there are thousands in tests that are not covered my insurance. The CFS doctors love to hook you up to IV's. That costs a few bucks! I understand that these doctors are trying and working out of the box and cant treat for free. I searched and searched though and I wasnt finding many getting well at the "best" CFS centers.

    Im happy for Mike but I have to admit that has started a huge case of the "if only's." I hope no one takes that wrong but I am sure I am not the only one bordering on envy there.

    With all that said, the guy with the money and I broke up before I could find the darned clinic! :mad: Go figure. I was looking into Mexico, I even was trying to figure out where Magic Johnson was going. (Gotta admit he looks just a little to healthy to have AIDS) I just wasnt finding a lot of promise anywhere. (I understand there are no promises!!)

    Now I am back to wishing and hoping I could find a great doc and afford him.

    All of the replies I got certainly affirmed what I know. I guess sometimes we all need that.

    Now, I forgot who is out looking for the "healing bug or berry." I moved out in the middle of no where in Florida over a year ago. There are bugs out here that I dont think have yet been detected. None of which are pretty BTW. Anyone looking for a healing bug might want to venture in my direction. I will say, I am a bee magnet. (They know I am scared I guess)
    I always am the one that gets stung. At a wedding by the river in Montana once, I got stung 3 times. (no one else got stung but they werent flailing around during the ceremony either...) The next day I felt pretty good. Maybe there is something to those bee stings. (They arent cheap either!!!)

    So far, I think its about eating right (right for you), getting your mind in the right place, and finding the few supplements that seem to support your body.
    The rest is a crap shoot.

    Oh, and bugs...:eek:
  11. Robin

    Robin Guest

    m1she11e,

    The 1/2 dozen or so people I know who recovered, did so with no supplements, diet change, or non-palliative medication. Two got their diagnosis changed to chronic lyme and took antibiotics for several years (though neither are fully recovered, the both can work), the others improved improved gradually until well over several years, and one, who was very ill, had a spontaneous quick recovery. One guy swears by marijauna! haha.

    Andrea Whittmore took Ampligen (I think) but had to go off of it for side effects and is now pretty sick, with seizures no less. She's got all the money and access to the best treatment in the world, and yet needed a doctor on hand at her wedding in case she crashed.

    The pathology of ME/CFS isn't known, we're not sure even if we're all suffering from the same thing. Treatments are shots in the dark. People just experiment and do what helps them feel better, and that's pretty much what we're all stuck with. I'm very happy for Mike too but I am not sure why he got well, or if what helped him would help others.
  12. Suzy

    Suzy Guest

    another low cost success story

    A CFS patient here was very sick for 12 years. He had a bad gallbladderattack, ended up in the hospital fasting b/c he coudln't eat anything. They hooked him up to an IV containing nutrients (not Myers) and within a few days of this, his CFS symptoms cleared up. This was before the surgery. After the surgery and his release, he started fasting/cleansing/changed hisdiet. He eventually did relapse again iwth the gut problems, not sure about the fatigue.
  13. fresh_eyes

    fresh_eyes happy to be here

    Messages:
    900
    Likes:
    4
    mountains of north carolina
    The one thing that I've found that keeps my symptoms in check is very cheap - liver flushing per the Hulda Clark method. It's super kooky, but amazingly works for me and costs next to nothing.
  14. Terri

    Terri Guest

    Liver flushing

    Fresh_Eyes:

    Do you do the parasite flush and the kidney flush before the liver flush as she suggests?

    Just wondering if the first two are really essential.
  15. fresh_eyes

    fresh_eyes happy to be here

    Messages:
    900
    Likes:
    4
    mountains of north carolina
    Hi Terri. I don't really do the other flushes. (I have tried the parasite herbs protocol, but didn't notice any further benefits.) I also bend on the liver flush itself, for example I use canola oil instead of olive, which seems to work fine too.

    Disclaimer: I am *so* hesitant to give any advice on here, because I fear it could make someone worse, and also I find it kind of annoying when others give lots of advice :p But if you have any more questions, feel free to ask!
  16. iofiel

    iofiel Guest

    I would be interested in seeing a debate about marijuana use, if there isn't one already.

    I smoke it, but mostly to give myself "energy". When I do smoke, I am able to get up more and accomplish regular errands I may not otherwise be able to. At the same time though, I hate the "high" feeling...so it's kinda a win/lose situation for me.

    Anyone else feel slightly better after smoking?
  17. m1she11e

    m1she11e Senior Member

    Messages:
    307
    Likes:
    86
    Florida
    liver flush

    I just did my first liver flush over a week ago. I am supposed to do a second one this week. Some people do swear by them.

    All of this leads back to the basics with me every time. It seems the more I go to docs and the more they try antibiotics and anti virals, the sicker I get. I was doing better and then they thought I had a sinus infection. I was hit with 5 months of antibiotics. Next they said it was allergies all along. Now it is allergies and GERD. I think if I had never started the first round of antibiotics all of this other stuff would not have happened.

    This is a complex illness and certainly not the same cure for everyone.

    Still wouldnt mind having a little more cash...:D
  18. Koan

    Koan Be the change.

    Messages:
    2,597
    Likes:
    53
    Hey Michelle,

    I agree with the general consensus here that more money and treatment does not necessarily equal better health.

    Over the years I have watched others do treatments I did not have to consider because I could not pay for them. I have yet to see too many treatments which I would have chosen based on the results of others. There are some supplements I feel are beneficial but I can't afford them either. On balance, though, I don't think I'm doing any worse than anyone else.

    I'm hoping that when a treatment becomes tested and true, it will be more financially attractive to treat me than continue to pay me $1000 per mo. in disability.

    Where money becomes a big issue for me is that it is very hard to improve your lot within your symptom envelope without resources. It is very difficult to do anything but keep up, or not fall too far behind, with basics needs - cleaning, food - without any support or assistance.

    Also, basic things wear out and can't be replaced. They don't make a lot of difference unless you want to leave the house and you realize that slippers just won't cut it...

    It's hard enough to get back from zero if you regain all of your health and vitality but it's almost impossible to lift yourself up from zero when all you've got is weary and ill zero. I find it very, very hard to figure a way out of poverty without regaining robust health. I'm sure sociologists have some kind of formula for expressing this effect.

    But, I have yet to see a treatment I would have been willing to bankrupt myself for - had I not already been bankrupted by ME/CFS. I thank my finances saving me from I know not what worse fate. And, I thank my "genteel poverty" for keeping me housed and fed!

    And, Michelle, I wouldn't mind some more cash, either. I just bought a lottery ticket but I had to get the 16 million ticket ($2) rather than the 30 million ticket ($5!). Never mind, 16 will do nicely, thank you.

    Peace out,
    Koan
  19. Koan

    Koan Be the change.

    Messages:
    2,597
    Likes:
    53
    Hi iofiel,

    It helped me quite a bit for several years and I used it like you do. It kept me upright but I wonder at what cost. It may be one of those substances which allows us to override some systems which are, very reasonably, trying to knock us down for our own good.

    The last several times I've checked it out (4 times in 2 years) it hasn't really worked and has left me feeling as though I had extra junk in my system without giving me a lift.

    Pity!
  20. Kati

    Kati Patient in training

    Messages:
    1,829
    Likes:
    899
    Totally agree with you on this. I also find there are potential harms that can be done with self medecine- especially when one combines traditional and alternative medecine, for synergy can put a toll to your body.

    As for everybody's advice, I take some, and leave some- in general supplements one buys at the health food store doesn't makei it home. One can spend thousands just on that.

See more popular forum discussions.

Share This Page