What has helped your CFIDS the most?

Discussion in 'Fibromyalgia Main Forum' started by Boysmom1, Dec 16, 2002.

  1. Boysmom1

    Boysmom1 New Member

    I was recently diagnosed with CFIDS. I also have systemic candidiasis, leaky gut syndrome, brain fog, anxiety, urinary symptoms, food allergies, pain , fatigue, etc etc. At least I have a diagnosis now. I do alot of research on this, but what has actually helped all of you the most? I keep reading about all these supplements that are helpful, but if I took them all regularly, they would cost me hundreds of dollars a month. I have found a good doctor now, but she is a naturopath, not recognized by my state, so I have to go thru another Family Practitioner. This can be a pain sometimes. Being an RN, it has taken me awhile to admit I am sick, and to concentrate on me for a change. I would love to hear from you all, what therapies/supplements/medicines have helped the most.
    Take care and good luck to all of you!
    Michelle
  2. teach6

    teach6 New Member

    Welcome to the board. I also have CFS, along with NMH and FM. I would suggest that you start with your worst symptom first. For me that was the NMH. A year ago I was basically bedridden. Now I am able to stand for a few minutes at a time, get out of the house, go shopping, as long as I use my scooter or an electric cart at the store.
    I am able to do that due to the meds I take for my NMH.

    As for overall advice I would say learning to live within your energy envelope is one of the hardest and most important things you can do. To begin with try resting regularly every day, around the same time.

    For most people it is best to begin with at least 15 minutes in the morning and 15 in the afternoon. I had to begin with a lot more because my fatigue was so bad. Currently I sleep between one and two hours every afternoon.

    Another thing that has helped me is to balance my activity time with more restful times. I have learned to recognize signs that I am overdoing it and that means it's time for me to sit down and take it easy for a while.

    I learned a lot of this through an online selfhelp course. If you do a web search for cfids self help you will probably be able to find the site. Or you can try putting all the words together and adding org at the end.

    I am still searching for ways to improve my fatigue. So far I have not found a satisfactory treatment. But I haven't given up. This month I will be starting on undenatured whey protein.

    Good luck to you.

    Barbara
  3. karen2002

    karen2002 New Member

    I have many of the same symptoms as you---with the systemic candida,and leaky gut. I immediately began taking berberine complex (berberine, barberry,oregon grape root extract, and golden seal) to kill off the candida. (gave nystatin a try---and it nearly did me in, lol) and began replacing the good bacteria in the gut, with lactobacillus acidophilus and bifidobacterium. I really believe a good deal of my malaise and fatigue was caused by the by products that the candida albicans put off...and I was systemic, like you. I had zero---of the healthy bacteria--and was totally over-run with candida. I take gastromyacin with bismuth salts as well, to bind with toxins, during elimination. I think getting the candidiasis under control is going to be a big benefit---

    I am one of those weird people that react the opposite to pain pills....and I have discovered that ultram actually gives me energy---sometimes too much. It also relieves my milder to moderate pain. I rely on vicodin for break through pain. Both of these as hard as it is to believe, make me clearer, and better functioning. I'm a weirdo, I guess.

    I take klonopin for improved sleep, restless leg syndrome, anxiety, sensory overload, and neurological pain.

    I take folic acid, magnesium with malic acid, B12, Co enzyme Q 10, Omega 3 Supplement, mannose for my urinary problems, and multi vitamins.

    The combination of conventional meds, and alternative therapies has gotten me from a bed ridden state, to a more functioning state. I do hope for more progress, as I implement a diet change, and re-introduce excercise, now.

    As far as the cost--yes, my meds and supplements cost about what you estimated...but I have more of my life back, and am not in pain 24/7.....and what kind of price can you put on that. One day I was grumbling about the costs involved in getting well....and my brother in law asked me what my life was worth. That shut me up. I am uninsured and I pay for it all out of pocket....as well as my D.O appts. Actually if you want to figure it this way---I am saving money. If the average income is $30,000 a year, and you are laid up in bed for a year, you have lost that much money---if you take no steps for improvement. My supplements and doctors visits are insurance for the future, I hope. I have a wonderful Doc, with alot of Fibro/Cfs patients, he is having success with. In addition, he keeps abreast of the latest research.
    He is will to try various treatments, which is so important with these disorders, as we are all such individuals, responding differently. He expects me to be responsible, and research, being an informed patient.
    Anyway...I feel as if I have written a novel, lol, didn't intend to. I am better and still improving,---and hoping I can attribute this to the care, meds, and supplements I am receiving. I don't think we can ever be 100 percent certain---paranoia---wondering if just a remission....i pray, not. Best wishes
    Karen
  4. karen2002

    karen2002 New Member

    for fatigue i began taking ADR formula. It contains:
    panax ginseng extract (root)
    siberian ginseng extract (root)
    licorice (root)
    vit. C
    calcium panthothenate --B5
    whole adrenal (bovine)
    adrenal cortex (bovine)

    This really boosted my energy--I have terrible fatigue. Unfortunately I would not recommend it to anyone with high blood pressure. I had to discontinue due to an elevation of BP

    Karen
  5. amilyne

    amilyne New Member

    i --like you get energy when i take something for pain..that is whenever im blessed by ER docs for a few days of relief...imo i think it is because we have pain releif so that helps us to feel like doing things more so than not...thats my oppinion but i dont know how it would effect me on the long term cause im unable to get anything for pain for more than a few days..it makes me so mad because i know that my quality of life would be so much better if i could take something on a daily basis but so far my docs dont think thats the answer. ;( but oh well what else do you do.
    --ami
  6. Mikie

    Mikie Moderator

    I have chronic mycoplasma infection and take Doxycycline. This has been a huge help. While on the Doxy, my chronic sore throats, swollen lymph nodes, migraine-type headaches, and IBS are gone. Sixty-Seventy percent of those of us with FMS/CFS suffer from chronic mycoplasma infections, so I definitely think trying the antibiotics is warranted. If your doc want proof, you can try the PCR DNA test, but the problem is that it's expensive and there is a high percent of false negatives. If you don't have a chronic mycoplasma infection, the antibiotics will do nothing. I also take colloidal silver to help kill the mycoplasmas and other parasites in the body.

    I take Klonopin for sleep, anxiety, sensory overload, and tinnitus. It has been a God send for me. Contrary to popular belief, it is not addictive. You do have to wean off it if you decide to quit taking it. I awake refreshed after eight hours of uninterrupted sleep almost every night.

    I take a good probiotic and have for years. This is especially important in preventing Leaky Gut Syndrome. They sell a good probiotic here. Refrigerate it after opening it. If you have Leaky Gut Syndrome, you almost surely have food allergies. Forget allergy testing. Do an elimination diet for the most common food allergens like dairy, wheat, corn, etc. Then add them back into your diet one by one.

    Finally, I use a zapper to kill off pathogens in the body. It's the best $150 I ever spent. If I feel a cold coming on, I can use the zapper for 20 mins. and the symptoms are gone. I know it works because it produces a Herxheimer effect just as the antibiotics do.

    Good luck.

    Love, Mikie
  7. Boysmom1

    Boysmom1 New Member

    I was glad to hear from you guys. It seems each of us have different symptoms, yet we are so very much alike! I have experienced a great deal of symptom relief in a short time since my diagnosis. There are 3 or 4 things I started taking at the same time, so I cannot contribute the help to only one thing-but here goes:

    I had hashimoto's thyroiditis- she put me on a compounded thyroid medication- I think it is long-acting T3, I take it twice a day.

    I began 200 mg of 5 HTP at bedtime.

    Started Kutapressin therapy. It is an immune modulator, made from extracted pig's liver (yuk). It comes in 20 ml vials, I think (forgive me for the poor memory). I was ordered to inject myself with 1 ml twice a day for 2 days, then off 1 day, then repeat, until I finished 2 vials.

    My doctor, a naturopath, told me only 2 places that she knew of prescribed it, one being my doctor (Family practitioner ). She told me if it worked, it really worked. Either it works or it doesn't. Like I said, I tried all 3 things at once- oh make that 4- the candida therapy, too-- But I have energy again like I haven't in years! I still have brain fog but not as severe, and my all over body aches have lessened considerably! It is no miracle cure, I still get fatigued very easily, but it is the most significant relief I have ever experienced. I had no trouble obtaining it at the local pharmacy, and it is about $140.oo a bottle. But you guys are right- what price can you put on your health?

    mabye this could be a helpful thing for some of you. I know kutapressin also is used to raise blood pressure. I have not checked my BP, but I have gained even more weight since starting it. About 15 pounds in the time I took it, which was about 1 month. Weight gain has been a BIG (no pun intended) problem for me over the past 4-5 yrs while I have felt so bad. I am at least moving and off the couch now.

    Please let me know if anyone else has heard of this treatment.
    God Bless
    Michelle
  8. Boysmom1

    Boysmom1 New Member

    I read something about that in the internet and thought it sounded very promisisng. just because the medical establishment doesn't use or advertise a therapy doesn't mean crap. My husband left a hospital AMA 2 days before a "Triple bypass" that was, according to the cardiac surgeons, going to kill him if he didn't get it yesterday, then started chelation therapy and 3 yrs later is doing fine.

    What i saw on the interent was really expensive, much more than 150. Where did you get yours and are you given instructins how much to use, etc?
    Michelle[This Message was Edited on 12/17/2002]
  9. Mikie

    Mikie Moderator

    You can actually buy zappers for much less than what I spent or even build your own. I got mine from the Hulda Clark website and she gives instructions for building your own, though I do not recommend it. My unit is small and very durable. It's made in Germany where they still care about quality.

    There are similar machines out there which work on the same principle as the zapper except they are discrete. You can test your body using the various frequencies to detect pathogens. Then, you can use that destructive frequency to zap them. These are the expensive units. Health practitioners often use these more precise machines.

    The type zapper I use is a "one size destroys all pathogens." It produces a square-shaped wave not found in nature which is in the destructive frequency range for flukes, worms, viruses, bacteria, and fungi. There is real scientific basis for this treatment and it works for me. It is held up to be a hoax by Quack Watch, but I say if it works, who cares.

    Love, Mikie