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Is there anyone here getting better?

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Chronic Fatigue Syndrome
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gloryroad
Regular Member
Joined : Oct 2006
Posts : 193
Posted 11/29/2006 6:28 AM (GMT -8)
And what are you doing that is making the difference?
profile picture
sparker
Regular Member
Joined : Oct 2006
Posts : 114
Posted 11/30/2006 1:16 PM (GMT -8)
Man, would be nice to hear some success stories once in a while.
profile picture
Orion82698
Regular Member
Joined : Mar 2006
Posts : 423
Posted 11/30/2006 3:23 PM (GMT -8)
Tis a long road we all travel.  Success I fear is few and far in between. 

It would be great though to hear of "From Fatigue to Explosive" stories :)

I hope to one day make my thread a long success story. 

profile picture
Tru
Regular Member
Joined : Sep 2006
Posts : 116
Posted 12/1/2006 6:45 PM (GMT -8)
I stopped taking all of my supplements, because my endo appt is on the 5th. I hope that he doesn't dissapoint me.
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hippimom2
Veteran Member
Joined : Jul 2005
Posts : 5403
Posted 12/2/2006 7:00 AM (GMT -8)
A few years after I was diagnosed with CFS (diagnosed in 1991) I did get mostly better for a while. I'm not sure that I actually did anything specifically to feel better or not. After my CFS diagnosis I went through a few really rough years of getting sick constantly (strep throat, flu, etc) and a lot of fatigue. Then gradually over time I started getting sick less often and regained some of my energy. I was eventually able to return to pretty much a normal life and was even able to get really into fitness, especially running. However, there were times when my body would just crash out of the blue and I'd be in bed for a few days and I always got tired more easily than most people and required more sleep than most people. Then 3 years ago I got sick again and have been diagnosed with lupus, but I'm sure the CFS is back and mixed in there too. I have read about some people eventually regaining some energy and other stories about people being debilitated for many many years. UNfortunately I don't think there is any way to tell how or when you might start feeling better. I think CFS has fallen by the wayside as far as research in the medical field - I hear a lot about fibro these days. A lot of people think CFS and fibro are the same thing, but from everything I have read and experienced, they have some similarities, but some very real differences too.
profile picture
lolaseattle
New Member
Joined : Dec 2006
Posts : 3
Posted 12/7/2006 7:26 PM (GMT -8)
Hi everyone,

I consider myself a success story. I'm not completely recovered, but I have made major strides the past few months and am WELL on my way. My first suggestion is to grab a copy of Dr. Jacob Teitalbaum's book "From Fatigued to Fantastic!" This is my CFS bible, and from other reviews I've seen from other patients, this is likely the most respected book for the lot of us. He gives crystal clear suggestions from a protocol that has helped many--until you are able to secure a copy of the book, I would suggest looking at his website to get a sense of his style. He's kind of a genius.
My second suggestion is to visit fibrocenters.com and learn about the Fibromyalgia and Fatigue Centers. I have been visiting one in Seattle since September, and the strides in my improvement start there. Dr. Teitalbaum is actually the head doc for all the centers, and that's why I felt secure they know what they're doing. They performed the most comprehensive bloodwork and the most thorough evaluation, and the resulting protocol is logical, methodical, and so far, effective. It's expensive, I warn you, but what possibly could be more important for your money than to get your life back? That's the attitude I took, and I have no regrets, just more certainty than ever that recovery is around the corner.

My supplement/drug intake is exhaustive, but hey, you didn't think there would be one magic pill for this thing, did ya?! The syndrome targets the central nervous system, and a domino effect causes disruption to nearly every system in the body--digestive, endocrine, etc. . .so the protocol I'm following is to treat them for the most part all at once and slowly until you find the effective dosage (especially tricky and important when we're talking about balancing a number of hormones that are deficient/out of whack.) I take compounded T3 and levoxyl for thyroiditis, Fatigued to Fantastic! Energy Enfusion (multi-vitamin powder that comes with B-vitamin capsule), Corvalen D-ribose for cellular energy, fludrocortisone for the adrenals, DHEA for testosterone, pregnenelone due to deficiency, COQ10, probiotics, nystatin, and diflucan for candida, maitake and olive leaf extract for the immune system, iron supplements, prescription and over the counter for anemia, Betaine HCL for hyperchlorydia, cod liver oil, Liv. 52 (natural supplement to help protect the liver from Diflucan), OTC calcium supplement. . .I think that covers it. . .I also go to the center once weekly for a 4 week period at a time for intravenous supply of vitamins and cellular energizers due to the nutrient malabsorption in the GI tract, and it helps significantly. I've gone from home-bound, bed-bound 75% of the time, down to bed-bound 15% of the time. I couldn't pick myself up off the floor, and now I can walk around my condo with ease, and do chores around the house myself that I previously had to rely on others for. I can drive short distances, I can go out as long as no loud noise, crowds, or bright light is involved, whereas I was not able to leave the house at all before. I even smile again! The chronic pain is dissipating, my reaction time, mentally and physically, is improving. . .I am able to concentrate and the mental fog is clearing. Instead of consistently gaining more and more weight, I'm finally dropping the extra pounds. My hair is starting to grow back. On two occasions I had enough energy and felt so good I was dancing around my living room in disbelief. I felt plugged in again. It's been SLOW progress, and for a while I couldn't see it, but looking back now, I see STRIDES!!!
profile picture
Tru
Regular Member
Joined : Sep 2006
Posts : 116
Posted 12/8/2006 6:28 AM (GMT -8)
Yes...I am. I started feeling better when I started taking selenium, magnesium, and chromium. Now, I've inculded Armour Thyroid and Hydrocortisone(cortisol for my adrenals). And WOW it's really amazing and it's only one day with the meds...but like I've said I started feeling better just by taking selenium, magnesium, and chromium, so I started feeling a better a few weeks ago. The addition of the meds is amazing!

I used to have a constant sore throat and once I took selenium, magnesium, and chromium it went away completely in days.

Also, I'm not constipated anymore. I didn't really think that I had that problem until my doc pointed it out. I thought that bowel movements every 3 days or so was fine.

I also did an organ detox...it helped a lot. I know that I will have to detox some more after receiving my toxin results.
profile picture
kim123
Veteran Member
Joined : Jul 2006
Posts : 1201
Posted 12/9/2006 2:11 PM (GMT -8)
I'd say from reading the reviews of the book "From Fatigued to Fantastic" that it follows somewhat an antifungal program, but with an expensive price tag attached. Save yourself the money...eat an antifungal diet (eliminate grains, sugars, most dairy, all yeast products), take natural antifungals (probably why lolaseattle is feeling better, she's taking antifungals... olive leaf, nystatin, diflucan), probiotics and see if you don't start feeling better within a month. Have any of you taken antibiotics or birth control pills at some time in your life before you got sick? They are known mycotoxins (fungal poisons). A fungus link has been implicated in many of our symptoms of diseases such as FM, CFS, IBD, arthritis, etc. and many have gotten well following an antifungal protocol. Cause/effect.... coincidence? Food for thought...

profile picture
sparker
Regular Member
Joined : Oct 2006
Posts : 114
Posted 12/12/2006 11:58 AM (GMT -8)

Tru said...

Also, I'm not constipated anymore. I didn't really think that I had that problem until my doc pointed it out. I thought that bowel movements every 3 days or so was fine.

Strange, but I just realized that my movements are like every 3-5 days.  I don't think that's good.  I just never get the urge.  For a while there, I'd only get the urge when I was about to explode.

This a common symptom?

profile picture
Orion82698
Regular Member
Joined : Mar 2006
Posts : 423
Posted 12/12/2006 12:36 PM (GMT -8)
I don't have that... but then again my diet is horrible.  Even when my diet was great a few weeks ago, I was still every day.
profile picture
ruggedtoast
Regular Member
Joined : Apr 2006
Posts : 44
Posted 12/23/2006 12:54 PM (GMT -8)
Yes! Paroxetine for several months, 50 mls a day. Made a world of difference to my fatigue and fibro.
profile picture
Red20
New Member
Joined : Jun 2010
Posts : 3
Posted 6/24/2010 7:41 PM (GMT -8)
lolaseattle said...
Hi everyone,

I consider myself a success story. I'm not completely recovered, but I have made major strides the past few months and am WELL on my way. My first suggestion is to grab a copy of Dr. Jacob Teitalbaum's book "From Fatigued to Fantastic!" This is my CFS bible, and from other reviews I've seen from other patients, this is likely the most respected book for the lot of us. He gives crystal clear suggestions from a protocol that has helped many--until you are able to secure a copy of the book, I would suggest looking at his website to get a sense of his style. He's kind of a genius.
My second suggestion is to visit fibrocenters.com and learn about the Fibromyalgia and Fatigue Centers. I have been visiting one in Seattle since September, and the strides in my improvement start there. Dr. Teitalbaum is actually the head doc for all the centers, and that's why I felt secure they know what they're doing. They performed the most comprehensive bloodwork and the most thorough evaluation, and the resulting protocol is logical, methodical, and so far, effective. It's expensive, I warn you, but what possibly could be more important for your money than to get your life back? That's the attitude I took, and I have no regrets, just more certainty than ever that recovery is around the corner.

My supplement/drug intake is exhaustive, but hey, you didn't think there would be one magic pill for this thing, did ya?! The syndrome targets the central nervous system, and a domino effect causes disruption to nearly every system in the body--digestive, endocrine, etc. . .so the protocol I'm following is to treat them for the most part all at once and slowly until you find the effective dosage (especially tricky and important when we're talking about balancing a number of hormones that are deficient/out of whack.) I take compounded T3 and levoxyl for thyroiditis, Fatigued to Fantastic! Energy Enfusion (multi-vitamin powder that comes with B-vitamin capsule), Corvalen D-ribose for cellular energy, fludrocortisone for the adrenals, DHEA for testosterone, pregnenelone due to deficiency, COQ10, probiotics, nystatin, and diflucan for candida, maitake and olive leaf extract for the immune system, iron supplements, prescription and over the counter for anemia, Betaine HCL for hyperchlorydia, cod liver oil, Liv. 52 (natural supplement to help protect the liver from Diflucan), OTC calcium supplement. . .I think that covers it. . .I also go to the center once weekly for a 4 week period at a time for intravenous supply of vitamins and cellular energizers due to the nutrient malabsorption in the GI tract, and it helps significantly. I've gone from home-bound, bed-bound 75% of the time, down to bed-bound 15% of the time. I couldn't pick myself up off the floor, and now I can walk around my condo with ease, and do chores around the house myself that I previously had to rely on others for. I can drive short distances, I can go out as long as no loud noise, crowds, or bright light is involved, whereas I was not able to leave the house at all before. I even smile again! The chronic pain is dissipating, my reaction time, mentally and physically, is improving. . .I am able to concentrate and the mental fog is clearing. Instead of consistently gaining more and more weight, I'm finally dropping the extra pounds. My hair is starting to grow back. On two occasions I had enough energy and felt so good I was dancing around my living room in disbelief. I felt plugged in again. It's been SLOW progress, and for a while I couldn't see it, but looking back now, I see STRIDES!!!


Hi lola!

How much did the initial consulatation and tests cost?

Thanks!
profile picture
bookworm21
Veteran Member
Joined : Mar 2008
Posts : 1766
Posted 6/27/2010 8:04 AM (GMT -8)
My doctor thinks it's pointless to give out a CFS diagnosis, especially since she said it only lasts for a few years and then goes away. How true is that? I'm on my second year of debilitating fatigue, and it's not going anywhere.
profile picture
Hoods
New Member
Joined : Aug 2010
Posts : 2
Posted 8/23/2010 4:34 PM (GMT -8)
My first online chat ever ...about time since I've had CFS for 20 years now! Trying to live a 'normal' life is a struggle and I am not cured, but I am doing VERY well and can hopefully provide hope for some of you! Tried millions of things and 2 have made a drastic difference. I was completely bedridden and the product Reliv gave me a life back. I still rely on it after 18 years. Everyone w/CFS must try it!! The second thing, an ionized water machine, has made a big difference as well. The water is a high PH balance and gets of acidity in the body. I wish everyone with CFS would buy those 2 things. They have been lifechanging for me. (I don't believe the water machine brand makes a difference - as long as it's a machine and not bottled.) I hope that helps many of you...they have both helped me greatly. My big issue now is sleep and nothing helps it. Today is a particularly rough day and I have a beautiful 11-month old to now be healthy for, hence I'm chatting for the first time. Let me know if anyone has found success with getting sleep!
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