1. Patients launch $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!
August 8th - What is the one thing about suffering with severe ME that the world needs to know?
Andrew Gladman brings our coverage of the Understanding & Remembrance Day for Severe ME, airing the voice of patients ...
Discuss the article on the Forums.

Two most effective treatments?

Discussion in 'General Treatment' started by underdog, Apr 6, 2012.

  1. underdog

    underdog

    Messages:
    15
    Likes:
    3
    Europe
    Hi everyone,
    I'm trying to make my mind up as to what treatment to try next.
    I would be grateful if you could share your thoughts about which treatments have helped you the most.
    Pls do not make a laundry list of all the things you tried and helped. Just the top two would be great, e.g. your No. 1 and 2.
    Could you also please quantify the improvement that each treatment has brought.
    That would be much appreciated.
    Many thanks in advance.
  2. nanonug

    nanonug Senior Member

    Messages:
    1,248
    Likes:
    384
    Virginia, USA
    How about starting with some testing? How do you know what you need without knowing what ails you?
    taniaaust1, ahimsa and RL_sparky like this.
  3. underdog

    underdog

    Messages:
    15
    Likes:
    3
    Europe
    I'd like to have an idea what really helps people and what doesn't.
    I've been reading posts for quite some time. There are so many things people try but I can't get a clear idea of what really helps.
    I have spent thousands on tests and treatments that have lead me nowhere. So I take testing with a pinch of salt now and prefer to focus on things that deliver practical results.Also I cannot afford any longer to have expensive tests.

    Besides, it would also help others to have a thread which gives an overview of the most helpful treatments, according to actual sufferers' experiences, particularly others like me who are relatively new to the forum.

    PS: answer to nanonug (only test results showing some anomaly)
    Past exposure to Chlamydia pneumonia, elevated IgG negative IgM
    Past exposure to Borrelia B., positive IgG negative IgM
    Elevated CMV IgG
    Mitochodrial disfunction (20% blocking of translocator sites, blocked by lipid peroxidation)
    Deficiencies: Vitamin B3, biotin, selenium, Gsh Px, borderline B1, B2 and CoQ10.
    Toxins from sweat analysis: borderline mercury and nickel, raised copper.

    I've taken a lot of supplements over the years to correct deficiencies and detox but nothing has changed.
  4. justy

    justy Senior Member

    Messages:
    2,452
    Likes:
    2,279
    U.K
    Hi Underdog (and welcome) I have had some good improvements following Dr Myhills protocol of supplements, resting and detoxing.

    My number one helpful thing has been Methyl B12 daily injections (sub cutaneous) i am supposed to take 500mcg a day, but can only manage 250mcg. If i take selenium at the same time that helps more. Not a cure though - but the best thing i have done so far, other than intense rest.

    To put this in context though - i have very little money and can't afford testing and expensive treatments. If i could i would go with pathogen testing and antivirals.
    All the best, Justy
    ggingues likes this.
  5. nanonug

    nanonug Senior Member

    Messages:
    1,248
    Likes:
    384
    Virginia, USA
    What did those tests show, if anything?
  6. underdog

    underdog

    Messages:
    15
    Likes:
    3
    Europe
    Nanonug, I've replied in my earlier post. However, this thread was not intended to be about me but about actual experiences with treatments.

    I was just asking;
    1. Your top two most effective treatments
    2. How much better they made you.

    Sorry but I feel frustrated when reading a thread going off topic.

    Justy, thank you that's helpful. Could you pls quantify how much improved as a result?
  7. madietodd

    madietodd Senior Member

    Messages:
    2,420
    Likes:
    1,598
    East Coast, USA
    Adrenal support
    mb12 with co-factors

    Sleep support is also critical for me.

    Sorry I can't give you percent better - things are still fluctuating, and I've only just figured out my dosages. But I'm steadily getting better across the board.
  8. nanonug

    nanonug Senior Member

    Messages:
    1,248
    Likes:
    384
    Virginia, USA
    In your original post, you said "I'm trying to make my mind up as to what treatment to try next." That sounds like it's about you. But even if it's not about you, how can you expect people to provide treatment options if no one knows what the problem or problems are? Myalgic Encephalomyelitis is not a disorder with a single etiology. Therefore, knowing specific symptoms and/or addressing specific test results is of paramount importance.

    In my case, for example, it was shown through testing that I had elevated levels of mercury and other heavy metals. I was therefore specifically treated for this using IV chelation. Chelation only stopped once tests revealed low levels of urinary heavy metals. However, there was a bunch of other stuff that I did such as Myer's cocktails, IV glutathione, IV hydrogen peroxide, heavy supplementation with many different nutrients and even antibiotics to kill Helicobacter pylori and other buggers in my system. So which one "worked"? Well, maybe they all "worked!" But all this stuff took years!

    Now, if there is one thing that most people probably should do as a basis to build upon, it is the Simplified Methylation Protocol or something similar such as Fredd's "Active B12 Protocol."
    Googsta likes this.
  9. determined

    determined Senior Member

    Messages:
    293
    Likes:
    47
    USA: Deep South
    1. chemotherapy for cancer and methylfolate/mB12.

    2. As a result of chemotherapy, I went from being able to walk approximately 50 feet (a bit of a guess) before feeling weakness/fatigue to not knowing WHERE my boundaries were (I walked about a mile a day during treatment, perhaps could have done more, but didn't test it); the benefit lasted over a year before the weakness/fatigue returned.

    After a month or so of some worsening of symptoms (headache, nausea, "sleepy" tiredness) on the methylation supplements, my energy levels increased substantially. I went from being able to walk my dogs and being grateful for their constant stopping to ditching the dogs and walking myself much faster, and further). I also find myself thinking, at least sometimes, that I could possibly work more now as a result. Chemical sensitivity continues to be my biggest problem in the way of that.
  10. Charles555nc

    Charles555nc Senior Member

    Messages:
    429
    Likes:
    51
    Anyone else find it hilarious that so many people couldnt follow directions? I laugh because I open threads and sometimes they are quickly hijacked by randomness. I mean come on Nanonug, you didnt even leave percentages, you listed like 8 things, and its not clear whether you yourself even tried the simplified methylation protocol.

    I have chronic fatigue syndrome and the top two treatments for me were...

    1. Taking 5 grams sodium ascorbate every meal, changed the way I reacted to a host of other supplements like malic acid, lysine, vitamin e (reacted better to them, after). about 25%

    2. Taking 25mg Dhea, twice a day, to boost my immune system/hormones. about 15%

    (If I had a third it would be edta suppositories, detoxamin, for chelation/biofilm buster, about 10%)
  11. taniaaust1

    taniaaust1 Senior Member

    Messages:
    7,837
    Likes:
    4,747
    Sth Australia
    1/ Twice weekly ihjections of B12 (in my case it was hydroxoobalamin which worked for me.. many need the methyl variety of B12.. Blood tests did not show I had a B12 deficiency). I stayed on them for years as when I stopped I went backwards again.

    These injections greatly helped my memory, I could hardly function without them eg without it was forgetting what basic everyday items were (not just what words were) and their useages ..now i just have a typical bad ME memory instead of not knowing what stop signs, toaster or even what a door was.

    2/ A hair analyses showed I had a molybdenum deficiency.. with correcting that, within 5 days I became able to do simple maths sums in my head again which I hadnt been able to do in 10 years. It has improved my concentation a lot.

    You say you have high copper.. I had high copper show up too. Be aware that molybdenum and copper work together. Molybdenum helps copper to clear from the body http://en.wikipedia.org/wiki/Molybdenum#Copper-molybdenum_antagonism
    I took selenium too which I think was helpful as like yours.. mine was low, to help address the copper issue.

    My top advice to you would be to try to work out why your copper is high and address this issue.

    3/ sorry im putting 3 things, I cant leave it out its too important...
    Diet.. working out what my diet issues were (food intollerances, hyperinsulinemia- 2 hr glucose tollerance test, hypoglycemia) and changing diet.
    Symptoms lessened due to this
    - less headaches 10% improvement
    - less sore throats 50% improvement
    - started waking up feeling actually ok 80% improvement
    - mood swings improved 95% (only have PMS ones now)
    - I used to be on meds for GERD but it vanished (100% improvement) with a different diet.

    Dont underestimate the affect of foods on ME symptoms
  12. nanonug

    nanonug Senior Member

    Messages:
    1,248
    Likes:
    384
    Virginia, USA
    OK, I hadn't seen this before. It seems you edited your initial post, right?

    Anyway, there is "actionable intelligence" here but I am just too sleepy right now to say anything too insightful. I will try to do that tomorrow.
  13. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

    Messages:
    3,944
    Likes:
    799
    Concord, NH
    I had a major flare up about 2.5 years ago, been sick 9 years now.

    I made a lot of lifestyle changes, cut out caffeine, soda, alcohol, and took up Meditation and Gentle Yoga. Also, stayed home more on weekends, did not travel and visit family and friends as much, still don't but getting ready to be more active.

    I did detox also, and still on Cholestryamine with Chlorella. I also incorporated LDN, Vitamin D, both inexpensive to do. Had a sleep study done again, and was found to have sleep apnea. Started using CPAP with oxygen, also found a drug which gives me much more restful sleep, stopped Trazadone, on Remeron for the last 2 plus years. Sorry if this is to much for you, but didn't want to give you the wrong idea on what worked for me. I got tired of trying 1 thing at a time and going weeks to months, to determine their efficacy.

    GG

    PS Got back on my bicycle last year, didn't crash badly. Improvement 30 to 50%. I think I had been on Thyroid meds and DHEA beforehand. FYI
  14. Charles555nc

    Charles555nc Senior Member

    Messages:
    429
    Likes:
    51
    Tania, I believe the original poster wanted % improvements next to each treatment.
  15. taniaaust1

    taniaaust1 Senior Member

    Messages:
    7,837
    Likes:
    4,747
    Sth Australia
    Its very hard to put improvement in a percent.. much easier to say actually what I then found I could do eg addition in ones head again, due to the improvement.

    I get over 90 different symptoms with the ME, so something may be of great benefit of a certain symptom to the point of fixing a symptom but hardly puts any percentage dent into my whole ME case at all due to the amount of symptoms I have.
  16. Googsta

    Googsta Doing Well

    Messages:
    391
    Likes:
    156
    Australia
    50% improvement - not getting my knickers in a knot when someone doesn't understand a question, especially when they probably have brain fog.
    :Retro wink:
  17. Mark

    Mark Acting CEO

    Messages:
    4,512
    Likes:
    1,929
    Sofa, UK
    Hi Underdog, welcome to the forums. :D

    I think it's a good idea for a thread, for people to list their top 2 treatments, because a nice clean thread with lots of short, simple posts would give an interesting overview of which treatments people here find to be effective. It seems like a good way to get the 'big picture' and get some good ideas you could pursue.

    At the same time, nanonug makes a good point that we are a mixed group with different individual histories, and what helps each of us most will differ depending on our circumstances, so it's also good to find out a bit more about your own history and then people with similar experience can suggest things that worked for them, which might be more relevant to you. I'm sure nanonug is only trying to be helpful by pointing that out and offering to comment on the test results you've now posted.

    These two different approaches have unfortunately got rather mixed up already in this thread, so I'm wondering if it might be a good idea for you to start a separate thread where you post a bit of detail about your test results and symptoms, post a link here to that thread, and nanonug and others can respond to that extra information there.

    The moderators can then tidy up the situation by moving the off-topic posts from this thread to the other one, and we can get this thread back on your stated topic of the two most effective treatments.

    It would then help us a lot if people can please stick to the topic of stating their '2 most effective treatments' on this thread from now on, so that we have less work to do tidying it up - thanks! :D
    Googsta likes this.
  18. Mark

    Mark Acting CEO

    Messages:
    4,512
    Likes:
    1,929
    Sofa, UK
    So then: for me, I would say (as I think I have already in my profile...and note that members' user profiles can list that information so you might find that useful):

    1. Variation of Myhill protocol based on BioLab testing of my deficiencies and sensitivities and analysis of dysfunctional enzyme pathways: Sublingual B12, Co-Q10, L-Carnitine, High-strength zinc, Omega-3s, Multi-Vitamins, probably some more I forgot, plus detox (far infrared sauna) and avoidance of key triggers (washing up liquid, PBDEs, various other chemical triggers, dietary triggers identified by elimination diet and food sensitivity testing by Allergy UK, mold, and of course, exercise) - 60%

    2. Continued avoidance of key triggers, especially mold, dust, and non-cotton and formaldehyde-treated cotton clothes...and I have now gradually re-introduced dietary triggers I avoided before, many of which I can now tolerate in careful doses. - further 20%

    Percentages are very hard to say, it's very rough of course, but I recovered dramatically although very gradually over the course of the year+ on treatment 1, and have continued to improve very gradually on 'treatment' 2, to the point where I suppose I'm now 80% functional, although still with several sensitivities and still not exercising very much, but largely able to function 'normally' within the limitations of avoidance of key triggers.

    Hope that's helpful...tricky to pull out anything specific from the above, because I did it all in one go really, and I think I did need that complete personally tailored package, but I think the B12 and the identification and avoidance of triggers had the most obvious effects.
  19. Jenny

    Jenny Senior Member

    Messages:
    1,224
    Likes:
    176
    London
    I recovered to 95% for 15 years, after doing colonic irrigation, acupuncture and Chinese herbs. Impossible to say though whether these treatments led to recovery, as I was gradually improving anyway.

    Then relapsed badly a few years ago. Tried acupuncture and herbs again with three different practitioners, but they had no effect. (My original acupuncturist has moved to the US.)

    Haven't tried colonics again.

    Jenny
  20. justy

    justy Senior Member

    Messages:
    2,452
    Likes:
    2,279
    U.K
    Hi Underdog, so hard to give a % for improvements. I was rated at about 25% on the bell scale, at this point i was in bed nearly all day - completely housebound - able to do one or two small tasks over a whole day such as empty dishwasher cook half a meal for family. Talking and interacting where exhausting and i felt heavily poisened and severely ill all the time.

    Now i am able to go out about 3 times a week for short trips - i have days where i feel almost not ill- days where i think this is it i am nearly there! i can do housework slowly - talk for a couple of hours with friends, play board games with the kids, laugh without getting ill. However if i do this all the time i will crash back to about 35% for about a week. I can now drive short distances and do very light gardening and short walks. i can work on the computer for a few hours a day and study at home. I still overdo it too much, it feels like the progress is slow but maybe another year at this rate and i will be up to about 70-80%. I still cant do anything strenous - if i mop a floor or try and weed with a fork in the garden i instantly feel like im going to die and have to lay down for a few hours to recover. Things are happening though.
    All the best, Justy

See more popular forum discussions.

Share This Page