To: CFS'ers that have recovered or improved substantially

Discussion in 'Fibromyalgia Main Forum' started by shanwill, Jun 30, 2006.

  1. shanwill

    shanwill Member

    HOW did you do it?

    I thought it would be interesting to have a list of key points from those with CFS who have improved alot or even feel recovered. Can you recall a turning point?
    Was it diet, vitamins, drugs, pacing, life style change, pyschiatric counselling, exercise, rest, just went away in time on it's own....etc.

    Am very curious have any responses so if you are one of the lucky ones PLEASE respond!

    Thanks,
    Shan
  2. deliarose

    deliarose New Member

    but I am much improved.

    Hard to say what exactly. Gave up full-time work 18 months ago. But it wasn't until I started treating myself 3/4 months ago... that I improved and began to feel hopeful again.

    I started on a vitamin regime, and recently added the anti-viral med Valtrex.

    Vitamin regime seemed to reduce the fatigue. Valtrex, and enzymes (Bromelain/ Natto) have helped considerably with the fog.

    I took Ken Lassesens' "For What It's Worth" protocol as my model. (google it.. and you'll find the website.)

    I started with Vit D and whey...then glutathione, Recup, probiotics. The vitamin cocktail I take is loosely based on Marty Pall's protocol.

    Essentials are Vit C (a couple of grams). Omega 3 & 6 oils, gingko, cranberry, bilberry, NT Factor Healthy Aging..Alpha Lipoic Acid, CQ10....

    Oh yes, and I've been taking sleep meds the whole time, but my sleep study says I'm still not getting any stage IV sleep, so I'm about to try Xyrem.

    Still working on my diet.. which has sucked for the last 6 years... I'm eating a lot of meat.

    For what it's worth...

    Delia
  3. shanwill

    shanwill Member

    thank you for the responses so far.
    I've also read marta's post on her diet. Once I have more responses I'm going to print the list, highlight the similarities, and get to work!!!

  4. cherylsue

    cherylsue Member

    You can follow my recovery by reading my posts. I've had two 14 month bouts of CFS both following a high fever and a virus. Currently, I am in 90-95% remission, and my husband and I are planning to travel to Europe in August. I'm a little nervous concerning jet lag, etc. since I probably need to nap more than most people. I try to walk a mile on most days.


    Helpful:
    Sambucol Elderberry Extract for cold and viral infections ( I take often as a preventative measure)

    ProBoost thymic protein poweder (sold from ProHealth)
    I take 1 pack daily as a preventative measure

    Clear Tract Powder (D-Mannose)
    I take as needed to prevent urinary tract infections

    Daily vitamin
    Pynogenol
    Grapeseed

    Pacing (take a nap when needed)

    Avoiding chocolate (hard to do)

    fresh lemon juice in water (makes your system alkaline)

    The above works well for my body. The secret was to reduce my viral load.

    Hope this helps.

    CherylSue

  5. Michelle_NZ

    Michelle_NZ New Member

    Please tell me there are more than 4 people on this site who have recovered or improved?!

    Personally, I've seen an improvement in my fatigue levels (other symptoms have gotten worse however) in the last few weeks. I've been doing a few things over the last 3 months that I think have helped, including:

    - Licorice and sea salt (increased my BP from 80/50 to 105/60)
    - Neurontin - taking it 3 weeks now, its helping with my facial and head pain. Not taking it away, but making it bearable.
    - Fish oil and EPO
    - CoQ10

    Cheers
    Michelle

  6. jess

    jess New Member

    It seemed sudden but in the past few weeks I seem to have made a huge improvement. I'm not sure but I think the diet I have been on has made a big difference. I eat no bread, pasta ,potatoes or rice.My diet is fruits, veggies, healthy protein and everything organic. I'd say it took almost a year. I have always taken supplements so I'm not sure they have caused the improvement. I can't believe after 20 years I am able to work out now at Curves. After 3 weeks I have not relapsed

    I do have some muscle pains but I am able to use capsaicin cream to help with this. I also take D Ribose especially after I exercise.

    Maybe it's just a lucky remission. I hope it continues. Jess
  7. KelB

    KelB New Member

    I've had CFS since August 2004. Started to improve May 05 after an 8 week CBT course. This taught me some vry uesful skills and the ones that helped me most were:

    - Taking proper rest (not just physical, but mental as well. Deep breathing, meditation etc)
    - Four half hour rests, at regular intervals through the day. Helps the body & mind recognise when it is appropriate to slow down.
    - Keep regular times for going to bed and getting up. Doesn't matter how wacky they are as long as you establish a routine. Helps the body & mind recognise when to rest and when to be wakeful.
    - Getting proper sleep at night thanks to rest regime & regular sleep times.
    - Activity pacing. Do something for 75% of the time that you think you're capable and then stop. Don't do something until you start to feel tired as this indicates damage being done.
    - Cutting down stimulants like tea, coffee, cola and limiting sugary, fatty foods.
  8. mollystwin

    mollystwin New Member

    due to FFC.
  9. Roseblossom

    Roseblossom Member

    Since I started:

    * Taking amino acids, Bs, and Citracal with magnesium.

    * Getting off Effexor.

    * Reducing stress in every part of my life.

    Thanks for asking :)

    Best,

    Roseblossom

  10. spacee

    spacee Member

    But before that and trying countless things:

    1.Klonopin
    2.Isoptin 240 SR for tachycardia which was causing panic and anxiety.
    3.Enada NADH which has D Mannose in it and keeps my bladder in good form.
    4.Kutapressin/B-12 injections which was good until Kutapressin was no longer manufacture (but you can obtain Nexvir now).
    5.Immune Transfer C took the place of Kutapressin and works even better for me ....but not for everyone.
    6. Exercise as tolerated. Started with warm pool therapy with the arthritis patients, slowly worked up to 5 mins at the Y on weights eventually up to 20 mins. Now, walk 45 mins 2 times a week and yoga 1 hour 2 times a week. When life is quiet I can do more. When it is busy I don't do any.
    7. Magnesium 500 mgs at night.
    8. NAC with B-6. Just started but it makes me feel "calm" in a way I have not felt in a loooong time.
    9. Diet: A green salad daily from the organic section of the produce section. Try to eat range free/no preservatives, etc.

    I am not nearly as bad as I once was (homebound), but I am not as good as I want to be (well). I have been sick 20 years.

    Linda
  11. labrat

    labrat New Member

    I have improved, but definitely not recovered. I was diagnosed with CFS in Sept 2003 after 9 mos of symptoms.

    The only thing that seemed to help me improve was rest-I was off work on disability for a year and a half. Slowly, I started working part time for a year and have returned to full time work 2 mos ago. I have had a return of severe fatigue and reduced my work hours already.

    I have improved greatly, but I am not recovered. I think I'll always have to be very careful about stress, pacing, and doing too much.

    Tracy
  12. Roseblossom

    Roseblossom Member

    I think of the pacing, avoidance of stress, and taking good care of myself as maintenance.

    I will never ever take my health for granted again :)

    Roseblossom
  13. labrat

    labrat New Member

    Looking at Roseblossom's bio, I remembered one other thing that helped me improve.

    My kitty, who will lay down next to me wherever I am and keep me company when I feel bad. My kitty looks just like yours, Roseblossom, she's a butterball and weighs 14 lbs. When I got her she was so small, I thought she was a kitten but the vet said she was at least 2yrs old. She was a stray and I named her Sweetie.

    Tracy
  14. Mikie

    Mikie Moderator

    Using the Guai Protocol.

    Slooooow but significant improvement with CFIDS basically using the Brewer Protocol--antibiotics, antivirals, Heparin injections, and transfer factors. That just for the chronic stealth infections. I also take probiotics, undenatured whey, and colostrum for building up my own immune system (actually, the TF's help with that too).

    Klonopin has really helped with getting better sleep and just about putting an end to sensory overload and anxiety.

    The rest is basically nutrition, supplements, and stress reduction.

    Love, Mikie
  15. Roseblossom

    Roseblossom Member

    Animals are so very healing! I'm glad you have your little friend :)

    Roseblossom