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Old 05-09-2009, 04:40 PM   #1
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Question What have you tried? What works what doesnt for CFS?

Hello all,

I would like to have as many people with CFS to participate in this thread. I have a question:

What have you tried, did it work or didn't it work?


Some current ideas I am thinking that can be done are:

1) Heavy metal (such as mercury) chelation.
Some symptoms of CFS do appear to be similar to heavy metal poisoning.

2) Raise immunity against disease .
The theory is if CFS is due to a latent virus that the immune cannot yet deal with, if the immune system is strengthened, it may be able to fight off a virus.

3) Adaptogen herbs.

4) Fixing the energy system. EFT or something like that. Acupuncture?

5) Hypnotherapy.
To hypnotize oneself: "I am energetic and have lots of energy" or something like that.

6) Excessive rest.
Let the body recover from past stress.

7) Exercise.

8) CBT

9) Anabolic Steroids
Performance enhancing drugs, maybe it'd improve energy levels... I don't know.



Any ideas? Just thinking...


With best wishes,

Last edited by ABC1111; 05-09-2009 at 06:18 PM.

 
Old 05-10-2009, 10:04 AM   #2
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Re: What have you tried? What works what doesnt for CFS?

I'll address, first, my experience with the individual therapies you've mentioned (although I haven't tried many of them). They are:

Raise immunity to disease: I think there are two subsets of CFS patients with respect to immunity -- those with reduced immunity who seem to get every cold and flu going around in addition to their CFS, and those with an overactive immune system that virtually never get a cold or the flu. I fall into the latter category. I've read that many CFS symptoms may be the result of an immune system continually turned on to fight a virus the body has cleared, but doesn't realize is gone. I experienced a low-grade fever every day for almost 20 years (a sign that my immune system is already in fighting mode). In my case, I'm not sure strengthening it would be positive. I have tried various immune-enhancing herbs (such as echinacea) with no effect.

Accupuncture: I tried accupuncture for 1 1/2 years -- first three times per week, and gradually reducing to once a week. After each appointment, I felt temporarily energized for about an hour (the placebo effect, perhaps?), but it never achieved lasting improvement. One aspect of the accupuncture treatments that did work was "moxibustion" (holding a burning cigar-shaped stick of pressed herbs next to various points on both feet). I was experiencing icy cold feet, and circulation so bad my toes and heels were purple, with open sores. The moxibustion really helped, and years later, this problem is still much improved.

Hypnotherapy: Well, I have never been hypnotized, but I did try positive affirmations on a daily basis for more than a year, with no result except frustration that I wasn't getting better, despite my attempt to will myself so.

Rest/Exercise: Rest is by far the best "therapy" I have tried -- exercise among the worst. I was an accomplished athlete before becoming ill, so my expectations on how much I should be able to do were correspondingly high. Exercise always makes me worse. For years, I conscientiously did a 20 - 30 minute slow walk almost every day, and it never became any easier (although there were variations in how I felt from day to day). I've tried various types of gentle exercise -- arthritic aquasize, yoga, tai chi, etc. In every case, what starts out doable becomes increasingly more difficult, until I'm barely functional -- both physically and mentally. This despite the classes being with participants in their 70's and 80's -- quite demoralizing. A few years ago, I received advice from a CFS specialist that patients who become worse with exercise should limit their activity to that required for day-to-day living (eg. preparing meals, light housework). I've taken this advice (with the exception of occasional walks), and it sure makes me feel less ill.

CBT: CBT was worthwhile in helping me to accept the limitations of a chronic illness. It did not, however, make my symptoms any fewer or less severe.

Other things I've tried:

Antidepressants: I've tried many types of these drugs (for insomnia, not depression), and in every case the side effects were extreme -- this despite taking the lowest dosage possible (even having them prepared by a compounding pharmacy in liquid form to further dilute the active ingredient). I had similar results with prescription sleep aids.

Brain wave reprogramming: Wiring my brain up to a computer demonstrated that my brainwaves are unbalanced such that I am never completely awake, nor completely asleep. I tried an 11-week program designed to rebalance my brain waves using flashing lights -- the result being increased fatigue and horrific nightmares.

Nutripathic diet and supplements: I was placed on a severely restricted diet (four specific steamed vegetables, undressed green salad and fresh vegetable juices) plus various supplements (adrenal supplements, among others). I lost so much weight, I looked like I lived in a third-world country, my menstrual periods stopped, and I was extremely weak. The practitioner claimed I felt worse because I was depressed I "couldn't eat what I wanted". Yeah, right! I lost all confidence in this practitioner when I glimpsed her eating a greasy hamburger and fries for lunch.

Naturopathy: I don't remember which supplements the Naturopath prescribed. I just remember I experienced no improvement.

Active Release Therapy (for muscle pain): This practitioner became extremely frustrated with me when, no matter how hard he tried, my muscles rapidly tensed up again after treatment.

Cranio-Sacral Therapy: After the first treatment, my sleep was better than it had been in years. However, subsequent treatments did not reproduce the initial improvement.

B-12 or Magnesium Sulphate injections: Initially, provided increased energy (for a few days). But, the "wired" feeling further disrupted my sleep, and with reduced sleep, my CFS symptoms ultimately became worse.

Cleanses (such as the Wild Rose Herbal Detox): I tried doing cleanses (diet and supplements) several times per year, for several years. They helped me to lose a bit of weight, but did nothing to reduce my CFS symptoms.

Chiropractic (various types): Typical spinal and neck adjustments neither made me better, nor worse. Upper cervical adjustments (through a specialized type of chiropractor) reduced headaches. Network chiropractic (intended to affect the central nervous system) resulted in significantly increased fatigue and pain.

Essentially, nothing I've tried through a practitioner (often at great expense) has helped me to feel better. What has worked is as follows:
  • avoiding food additives (cooking from scratch, eating most meals at home)
  • avoiding chemicals in building products (spending little time in new or newly renovated buildings, carefully choosing everything we bring into our own home)
  • allowing myself to sleep as much as I need to (currently up to 13 hours per night)
  • limiting time spent with others whose healthy lifestyles/activities encourage me to try to keep up, with a resulting "crash"
  • adopting a low GI diet (very little refined carbohydrate), resulting in reduced digestive problems and heartburn
  • pacing all activities (eg. setting a timer for 1/2 hour to ensure I don't get "sucked into" doing more than I should, and paying later for it)
  • avoiding bright sunlight for extended periods of time, and staying indoors in a cool house when it is hot outside
  • drastically reducing frequency, duration, intensity of exercise programs that are required to treat back pain and repetitive strain injuries (which I experience with very little activity)
  • learning to say "no" to other peoples' requests
  • avoiding crowds, noisy and overwhelming environments (bright lights, strong scents, etc.)
  • being extremely organized, and giving myself enough time to do tasks without having to rush (usually at least three times as long as a healthy person would require)

I regret I couldn't offer any resounding success stories. I don't regret having tried any of the above. Knowing I was trying at least provided emotional/psychological benefits. I hope you get lots of responses to your survey. Cheers!

 
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Old 05-10-2009, 10:30 AM   #3
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Re: What have you tried? What works what doesnt for CFS?

Thank you very much Sensitivo for your interesting and detailed post.

Last edited by ABC1111; 05-10-2009 at 10:31 AM.

 
Old 05-12-2009, 08:33 PM   #4
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Re: What have you tried? What works what doesnt for CFS?

you need to see a Infectious Disease doctor and get on some Valcyte. CFS is caused by a chronic virus AMEN

 
Old 05-12-2009, 08:34 PM   #5
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Re: What have you tried? What works what doesnt for CFS?

Valcyte with great improvement

 
Old 05-17-2009, 04:07 PM   #6
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Re: What have you tried? What works what doesnt for CFS?

Starting with natural suppliments, I've tried:
Multivitamins, B-12 injections, Coral Calcium, HGH, Iodine, coenzyme q-10, whey powder, a suppliment that boosts your adrenal glands (sorry can't think of the name, it included maca powder which is supposed to help your energy level, liver support suppliments, + ginsing.

There's been more, I just can't think of them all. None made enough difference that I would tell about. Iodine though gave me some energy but it counteracted itself.

Prescription medications:
Adderall, Adderall XR - yes it can hype you up but it doesn't come without the crash down, plus it interferes with my sleep

Provigil - this was nice if I needed to stay more alert & awake, my eyes would get heavy when driving & I totalled my car, this helped give me that awake feeling, but I was still fatigued, it didn't stop that

For pain, I have had alcupunture, chriopractic care, & physical therapy. I'd have to say PT was the best. None of these methods have helped the CFS. The deep massages actually made me hurt worse.

Rest: Big no no in my book. Only makes things like ten thousand times worse (the fatigue & the pain). Oversleeping is not the answer.

Sleep studies + c-pap machine: didn't phase me with my energy level

Exercise: as killing as it is, I have to give it a thumbs up. 2 days I've been walking 3 times a day. So far, I have been feeling much better. I had a crash down about 1:30 today and went for another walk, and pretty much good until 4:30. I am finding exercise helpful but it just hurts my legs & hips to walk. I am also exhausted during and after I am done exercising but it goes away & the end result = more energy.

Anti-depressants: were not at all helpful (zoloft, effexor, paxil, prozac, wellbuterin, lexapro, cymbalta). Getting over depression. Also wasn't helpful.

Flexeril & Darvocet: I loved this combination for the muscular pain, doesn't do anything for the fatigue though.

Ambien: use it to help me rest, though I worry a sleeping pill is not the answer when you have chronic fatigue, because there is the possibility it could be helping to cause it

I have had the testing for heavy metals. Mercury level was okay. But I tested high on the aluminum, and mild elevations of Bismuth & Arsenic I think.
Did nothing about it.

 
Old 06-22-2009, 11:22 AM   #7
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Re: What have you tried? What works what doesnt for CFS?

Taking ribose helped me with energy levels. Although still not 100% it has improved my energy levels.

 
Old 06-25-2009, 08:02 AM   #8
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Re: What have you tried? What works what doesnt for CFS?

cmv....i also see dr. lerner. i haven't improved much but i have EBV and HHV6 and have been on the antivirals for 2 yrs. i have been sick since 1992. i think i am still going through die-off...or thats what i hope.

thanks
sue

Last edited by moderator2; 07-03-2009 at 07:45 PM. Reason: posted contact info - please read the posting rules

 
Old 07-15-2009, 12:53 AM   #9
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Re: What have you tried? What works what doesnt for CFS?

I posted this in another thread but will repost it here too as it relates:

There are certainly alot of different treatments to try. All should read Dr Teitelbaum's book 'From Fatigued to Fantastic' - its one of the most well known books on CFS. He covers LOADS of different drugs and natural treatments - most of the major ones and minor ones that have been tried for CFS, and gives his opinons on which work the best in his experience.

Personally the things I have found over the years (9yrs CFS) that have helped the most, are high dose vitamin C (at least 3-6grams a day somtimes more), & magnesium (chelate, orotate, citrate or aspartate). Those 2 helped more than anything else natural wise.

Oh and licorice root extract - definitely worth trying. I have adrenal insufficiency now and have to be on hydrocortisone, but before that licorice worked wonders. Especially for stamina and being able to be up and about longer than usual. You have to pulse it though (like 5 days on, 2 days off, or 4 weeks on, 2 weeks off) or it loses it's effect and you have to keep increasing the dose, which is what happened to me.

Also more things that help alot - a good b-complex (I find 'Jarrow's B-Right' the best out of many ive tried in years), and two specific things that help the adrenals are Pantethine and PABA. You can get all those from ih3rb very cheap. I unfort get headaches from alot of B-vits including those, and can only take b complex every third day or so to prevent that. However, if you can tolerate them, the combination of pantethine (300-900mg a day), licorice root (300-2000mg a day), and PABA (500-1500mg a day) can work absolute wonders.

I try not to use many drugs but there are a few i have to be on. Im on HC for adrenal insufficiency because i HAVE to be. Otherwise, i take valium at night (try to keep it to 1/2 a 5mg tab but doesnt always happen!), occasionally phenergan or diphenhydramine as my sleep is rather bad at night, and am on testosterone replacement (testogel). I get hangovers from almost any sleep drugs, and if i manage to sleep without any drugs i feel MUCH better brainwise for it the next day. However not sleeping is far worse for me than any hangovers are, so have to do what we have to.

I'm starting on GABA which can help reduce benzo's (valium, xanax, temazepam etc), in hope to reduce and possibly get off valium. Also L-Theanine and a combination of sleep herbs, will hopefully all replace the drugs. Melatonin can be good too but that also leaves me personally hung over.

Look into Ashok Gupta's Amygdala Retraining techinque - that is very much worth checking out, and has helped many with CFS. His theroy really makes sense for many people with CFS.

~Chris
----------------------
31, Male
5'9, 63kg (138lb)
Secondary AI, CFS/MCS/FM
42mg HC, 50mg Testogel
Melbourne, Australia.
----------------------

 
Old 08-22-2009, 09:56 AM   #10
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Re: What have you tried? What works what doesnt for CFS?

Thank you for your reply. I wonder, how can one test for yeast and such things? Are there blood tests to confirm or rule yeast out? Thanks

 
Old 08-23-2009, 09:10 AM   #11
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Re: What have you tried? What works what doesnt for CFS?

Quote:
Originally Posted by ABC1111 View Post
Thank you for your reply. I wonder, how can one test for yeast and such things? Are there blood tests to confirm or rule yeast out? Thanks
It is often hard to pick up 'stealth' yeast. This is of course candida that can make us ill either just from the gut or systemically, but isn't really bad enough to pick up on regular tests most dr's would do. Often it's only picked up in AIDS patients when it is SO bad that the person is extremely ill and it has taken over to a dangerous point.

The best and most often used method is to try an anti-candida diet and combination of either anti-fungal medication such as nystatin (gut only) or difflucan / sporanox (systemic & work better, but can be liver toxic). Or a combo of the diet and natrual/herbals such as pau darco, oil of oregano, caprylic acid (or the more potent undecanoic acid), black walnut, wormwood, garlic, etc.

There are a few tests that can be done though:

A blood test for candida antibodies, which can be done by any GP.

Stool tests can pick up yeast from the gut and also a host of other harmful microbes & parasites.

The two best ones are the Microbial Ecology Profile by Metametrix labs, and secondly the CDSA - Comprehensive Digestive Stool Analysis by Genova Diagnostics (ARL here in Australia). Info is on both the Metametrix and Genova's sites about these tests, and are very good at picking up gut pathogens.

~Chris.

 
Old 08-23-2009, 04:45 PM   #12
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Re: What have you tried? What works what doesnt for CFS?

Quote:
Originally Posted by ladybugmandy View Post
cmv....i also see dr. lerner. i haven't improved much but i have EBV and HHV6 and have been on the antivirals for 2 yrs. i have been sick since 1992. i think i am still going through die-off...or thats what i hope.

thanks
sue

Hi Sue,

I'd just like to ask about your experience with Anti-virals. Any information or advice you provide would be really appreciated.

I have high EBV titers. I don't have CMV and HHV-6 is too low to be the cause.

I have tried acyclovir for 6 months but didn't work for me. For the past 6 weeks, I've been on Valtrex (500 mg 3 times a day) but I don't think I'm noticing improvement yet. I did have a worsening of symptoms (by a lot) for 2 weeks during Week 3-4, but I'm not sure if it was the Valtrex or if I just unintentionally over-exhausted myself right before that.

1) How long did it take for you to notice recovery if you were on Valtrex?
2) How was the healing cycle like - i.e. did it get worse before it gets better?

Thank you so much for your time and help.

 
Old 09-28-2009, 02:30 PM   #13
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Unhappy Re: What have you tried? What works what doesnt for CFS?

Hello all,


I was experimenting with large quantities of multivitamins.
C, B, potasium, magnesium. No effect.

I have been taking superfood supplements for a week. No effect. Maybe I need to take them longer? Kinda expensive...

I even asked a psychatrist to prescribe modafinil (CNS stimulant). Took 1 100mg tablet in the morning for 3 days then quit. ABSOLUTELY NO EFFECT except that I had stronger than usual headaches for 2 days...

I also took a lot of ginseng. Didn't work... Maybe another adaptogen is needed?

I eat so much vegetables, fruits, vitamins, superfood... It is disheartening that they don't seem to work.

I meditate and I love it, but even that didn't yet work. Unfortunately CFS seems to hinder meditation as well, very quickly I get drowsy.

Best wishes.

Last edited by ABC1111; 09-28-2009 at 02:43 PM.

 
Old 10-05-2009, 08:40 AM   #14
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Re: What have you tried? What works what doesnt for CFS?

You certainly have a long list of potential options. Allow me to add one more to your list. It is easy, costs nothing and can be done within minutes. It's called EFT - Emotional Freedom Technique. It's like acupuncture, but you tap pressure points on your body rather than use needles. It's been shown to be 60-80% effective for pain, weight loss, emotional trauma, addiction, etc.

 
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