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Dysautonomia and POTS: An Overview
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What treatments HAVE ACTUALLY helped?

Discussion in 'General Treatment' started by keenly, Jul 8, 2010.

  1. keenly

    keenly Senior Member

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    what treatments have helped and from what state?

    I mean was anyone severly bed ridden; had their mito tests etc; saw they were producing only enough energy to stop organ failure THEN ROSE like the Phoenix after treatment.
    How were you before compared to after?

    I have been supporting the mito for 3 years and i am much better than i was; HOWEVER i was totally bed ridden with supe rlow ATP, defienct in coq10, b3, magnesium zinc etc.
    I am still mostly house bound with immense fatigue and i am now looking at removing toxins that are effecting adp to atp but this is a complex area.

    plz share
  2. taniaaust1

    taniaaust1 Senior Member

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    I had a methylation block which B12 injections have helped, i found i needed 2 injections per week or the good effects wore off (i dont need them so much now). They are the only thing which has helped my memory issues and brain fog. Without the B12 injections i cant function brain wise. B12 injections can apparently help in helping to clear toxins so maybe its something worth a go for you (be aware that i had herxing for the first couple of weeks with the B12, some get herx at first).

    And during the last couple of years ive been on the B12 my CFS is very slowly getting better. (I dont know if the B12 is doing that.. but i know it definately helps my brain function)
    .............

    I just remembered something else which did help me. Undenatured Whey. I felt much weller and more energy while i was taking it, improvement for me could be felt after only 1-2 weeks on it. Unfortunately on third week on it, I then developed a bowel/tummy sensitivity to it (went completely incontient) so had to stop taking it at that point. Which sucked as it really was helping me to feel better in my general health and energy

    Undenatured Whey helps the glutathione deficiency of CFS. Some brands are apparently better than others.. the one my CFS specialist had me take was Pharmafoods Isowhey complete formula. (this can be used for also complete meal replacement in some hospitals and is good for those who have no energy to cook food).

    I strongly suggest to try Undenatured whey. Dr Cheney suggests certain brands too (other than the one which i found helped me) if you do a search.
  3. wciarci

    wciarci Wenderella

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    I have to agree with the B12 injections, I am trying to get my doctor to o.k. weekly injections and to change the prescription for cyanocobalamin to hydroxy. CoQ10, mitochondria ignite, fibroenergy, amino acids, SAMe, Magnesium with Vit D, Vit D prescription, B vits with folate, biotin, tumeric, olive leaf extract, probiotics and undenatured whey protein are the cornerstones of my supplements and they have helped. What really jumped started my improvement was 3 years on low dose minocin (antibiotic) and three months on antivirals, then came the diagnosis of low B12 (hence the shots), low Vit D (hence the prescription), and low thyroid (hence the synthroid). I also avoid all sugar and simple carbs (try to live gluten free) I am not fully recovered but work full time and am slowly building up my exercise, might even join a gym or yoga center.

    Wendy
  4. lono

    lono

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    There is a subset of CFSers who have some specific abnormal biomarkers, namely they have melanocyte stimulating hormone (MSH) and vasoactive intestinal peptide (VIP) deficiencies, as well as elevated C4a and TGF-beta1 levels.

    There's no agreement on what is causing this (some possibilities: toxin exposure, exposure to mold biotoxins, infection, etc.). And there also seems to be a genetic predisposition.

    If you have these abnormal biomarkers, then there are some treatment options to try. There are several people on this board who have had some dramatic improvements, though unfortunately the treatments don't seem to work for everyone.

    Some of the possible treatment options are found here -
    http://www.patsullivan.com/blog/mold/

    If you don't have these abnormal biomarkers, then I would try other treatments.
  5. slayadragon

    slayadragon Senior Member

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    The only Canadian Criteria CFSers I know who were ill for more than a year or two and who have gotten close to being really well have done the following:

    1. Gotten to a good house/whatever in a reasonably okay location with regard to toxic mold and other biotoxins, and put aside contaminated stuff from previous residences (or had it age 5+ years).

    2. Do intensive detox.

    The second part varies a bit (but not too much) from person to person.

    Erik Johnson pursued detox naturally, through sweat and breath, by being in a super-pristine location and exercising.

    StormySkye lives in a terrific location and used a product called Threelac to address the fascia issues (allowing detox to occur more freely), then used green foods and other supplements to promote detox. She also used some supplements to support her immune system.

    Jonathan Wright used cholestyramine and exercise in super-pristine places.

    Mike Dessin used neural therapy and a variety of other things for detox, and some other things to support and rebuild his system.

    I have used cholestyramine, neural therapy and other things in super-pristine places. After I was doing really well already, I did some antiviral treatments that gave me additional help. Enormous amounts of methyl B12 are feeling good to me at this point, even though I couldn't take them early in my illness.


    These stories all have a theme. The people got to a REALLY good location (I know this because I went out of my way to visit them to see if it was good), got rid of their stuff from previous residences (most CFSers have lived in a bad place at one point), and then cleared their systems of the accumulated toxins.

    I believe that all three of these components must be in place for recovery to take place. Two out of three don't do the trick.

    Erik, Mike, Jonathan and I were mostly or totally bedridden. Stormy had been disabled for 20 years and was mostly housebound.

    We've all maintained wellness (out of bed doing things all day, exercising, eating normally, traveling around, working on projects or jobs, CFS symptoms pretty much gone, cognitive function mostly/wholly returned, feeling physically/emotionally good) continually since getting well.

    If anyone here has heard of anyone else, please let me know. I'd like to talk to them in depth and, if they're willing, pay a visit to them.

    Best, Lisa
  6. Jenny

    Jenny Senior Member

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    I got well in after 5 years of illness while doing acupuncture and Chinese herbs, and was well most of the time for 8 years. (Can't say that these were the cause of my recovery - I could have spontaneously recovered). Many people do recover spontaneously - I know more than a dozen personally. However, many also have later relapses, as I have done.

    I don't think my environment (eg mould) had anything to do with my recovery - I didn't move house and when I was ill was no better in other places.

    Jenny
  7. slayadragon

    slayadragon Senior Member

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    Jenny, I have a question for you.

    Recently I have realized that those of us who are reactive to toxic mold also are reactive to cyanobacteria. This is the toxic form of blue-green algae, that usually grows in bodies of water contaminated with chemicals.

    The really poisonous kind tends to be bright green, like green paint. Eventually it dies down to a darker green though.

    This stuff is particularly problematic in certain places in the U.S., where it seems to grow in sewers as well as in lakes. It seems to be more dangerous than toxic mold, which makes sense since cyanobacteria is generally recognized as harmful. Just not in the tiny quantities that influence at least some CFSers.

    Have you seen any of this stuff in England? I'm wondering if it might have an impact on why so many folks in England have such severe CFS, if so.

    Thanks!

    Best, Lisa
  8. Jenny

    Jenny Senior Member

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    No Lisa I haven't seen this type of algae. I don't often go near lakes - how would we come into contact with it?

    I'm not sure that those in the UK have any more severe ME than anywhere else - it seems to me that we span the whole spectrum of severity, just as those in other countries do.

    Jenny
  9. anne_likes_red

    anne_likes_red Senior Member

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    No Phoenix here, but I've tried all kinds of things over the past 2 1/2 decades and I can say hands down the single most lasting effective thing for me has been to adjust my diet and avoid every trace of ALL grains and other complex starches. That seems to have helped with inflammatory pain that used to be a constant feature of my CFS. (I have no pain now apart from the occasional sinus headache.) I was gluten free before but it didn't go far enough. I was borderline anaemic, despite supplementation with iron and co factors for 25 years and that's resolved this past year.
    I also eat a lot of probiotic foods and I'm sure thats helped though any change hasn't been as dramatic.

    I still have fatigue, but the difference for me has been from at my worst bedbound 20 hours a day to managing 12 hour days consistently including 1 - 2 hours of fairly brisk walking.
  10. markmc20001

    markmc20001 Guest

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    Heya slaya,

    Can I ask what you consider a "good location" for recovery?

    You mention a few folks here, you talking about people who have gone into remission? where can I read theri stories?

    thanks
    Mark
  11. sela

    sela Senior Member

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    marin co, ca
    the only thing that has helped in an obvious way is the paleolithic diet. my hypoglycemia is very much better because of the high fats. the bemer has improved my sleep.
  12. maryb

    maryb Senior Member

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    Annie so what does your diet look like? I have severe MCS and major food sensitivities, however I have improved immensely from where I was 3 years ago when I couldn't leave my bedroom and was on a diet of about 4 foods only. I have done this slowly and carefully but am still far from where I would like to be. I rely on rice bread, chicken, turkey, vegetables and salads mainly.
  13. garcia

    garcia Aristocrat Extraordinaire

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    Reno, Nevada. Right next door to the WPI. :D
  14. slayadragon

    slayadragon Senior Member

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    Here's a thread that talks about Mike, Stormy and me:

    http://www.forums.aboutmecfs.org/showthread.php?6383-Addressing-Toxins-in-CFS-A-MultiStage-Process

    Erik Johnson and Jonathan Wright both used "extreme mold avoidance" and detoxification to get to the point where they were mostly or fully well. They need to continue to avoid mold/biotoxins at extreme levels in order to continue to be well.

    I've spent some time in Reno, and Erik lives there.

    All in all, in cities go, it's a pretty good place. I don't think that CFSers (most or all of whom, by definition, seem to be sensitive to oxidative stress in substances like mold) would do too badly there.

    The exception is during the winter months, when the sewer ponds let loose with a bunch of "bad stuff" (we think it's either certain species of trichothecene-producing toxic molds, poison cyanobacteria, or a combination). So I'd advise doing treatments at WPI from March - October only.

    Best, Lisa
  15. SOC

    SOC Back to work (easy, part-time work)

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    The only person I know who appears to have fully recovered was not severely ill, not housebound. As I understand it, he could still work fulltime, but that was about it. He is now very active with no signs of illness.

    He did a long antiviral treament with Dr Lerner (6 or 8 years, I think). He firmly believes that treatment cured him. One could argue that either he recovered spontaneously over a period of years, or that he was a persistent virus case, but not an ME/CFS case. I couldn't say for certain that the antivirals did the trick, but I'm comfortable enough with his experience to try Dr Lerner myself. :D

    I got rid of virtually all my MCS-like symptoms with the Pall protocol, but not other neurological or immune symptoms.

    When my daughter was still in the stage of living normally except for several relatively short crashes a year, the Pall protocol seemed to help bring her out of the crash better and faster. That worked until a catastrophe after which my daughter couldn't get back into remission. The Pall protocol didn't help then. :sad:
  16. markmc20001

    markmc20001 Guest

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    Nevada?

    Thanks Garcia. I'll save Nevada as a last resort, and just keep sending WPI funds form my paypal account until they find a cure. I feel the need to be around trees though.

    Slaya. thanks. Extreme avoidance of toxins. Makes sense. Detoxing makes a huge difference for me, maybe I need to take it to the next level and get out of the mold, out of the cold, and out of the city. I've done everything else.

    Sorry to hear your daughter is sick too, SickofCFS. Glad to hear someboy made it to complete recovery though.

    The partial recovery of people make sense based on what I see the "recovering folks" describing.

    My docotr seems to think people recover from this. Maybe that is the newly sick he can help somewhat.

    I went from a bedbound "1" physically and "1" mentally to a around a 2-3 mentally and 3 to 5 physically under my current program over a three year timeframe. I have basically flatlined for 6 to 12 months though.

    I take all vitamins and no antibiotics or antivirals. just good old vitamins with a concentration on methylation, KPU, krebs cycle, and chelation. I just go by feel, becuase I don;t have the mental energy and cognition to really read much. I have a doctor giving me ideas and guiding me.

    The KPU protocol turned the lights on one or two days for me, and then they went out again though. I can tell when I am going the right direction becuase my sleep straightens out(unless I have metals coming out), my appetite improves, my hair goes from wirey and dry to soft and silky, and my libido improves.

    My situation seems to revolve around hormones, detox, excitoxcity and brain injury to sum it all up.(at the least to feel half normal some days) Actually some days I think if my hormones were corrected everything would just heal. I guess my body has a reason for keeping those off.(maybe the XMRV as one article suggested)

    I remain hopeful for remission, so much to the point I still have all my power tools, bicycles, golf clubs, motorcycle gear....
  17. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    rotating between several different sleep meds to try an avoid tolerence(occassionally go through some shocking periods of insomnia but would be worse without meds) imovane/zopiclone being my most reliable sleep med, tramal for pain, i also use 5htp for increasing mood( have a poor tolerance even for low dose antidepressants, increases sleep problems), neurontin for night time leg pains, famvir for reactive ebv/cmv( improvement in symptoms as well as blood work), i also use lipoic acid and nac to help keep my liver healthy from all the meds i take ( so far it seems to help),diet wise i follow a low carb atkins diet( carbs seem to increase my appetitte and drop my blood sugar levels). This seems to keep me healthy enough to work full time( although a struggle) and once or twice a week weight training ( very modified to suit cfs, not a typical healthy persons weight training)helps as anything aerobic which increases my heart rate to high cause fatigue and post exertional malaise, famvir is a big part of my improvement and i now wish i didnt stop it and use valtrex for 6 months as it set me back abit( mainly because the dose was to low and any higher was to expensive which i think would have probably helped and without it i struggle to work part time and the rest of my life is lying in bed or sitting in my recliner in a daze if it wasnt for famvir. I think it takes awhile to get the right meds and supplements to help, alot of trial and error and going backwards and forwards between these treatments. Without all this i think i would be house bound and it does take sometime to get use to the fact that we are dependent on meds although it would be nice not to but it does increase our quality of life for sure. There has been a few other things in the past that have helped but have stopped working and i have a few other things up my sleeve i wil be trying and will post about these things as i trial them.

    cheers!! i hope this helps someone.
  18. paddygirl

    paddygirl Senior Member

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    Hi Lisa,

    My ears pricked up when you mentioned treatment at WPI. Is there something on the cards? I'm hoping my insurance will pick up some costs at some point. I was planning to go to WPI on the 21st if I can get time off work. Not sure what to expect there but would love to get the lie of the land. I don't bother any more with the so called 'cures', I'm waiting for the real thing.

    Any info appreciated.

    Paddy
  19. taniaaust1

    taniaaust1 Senior Member

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    I added something else which had helped me to my original post on this thread... Denatured Whey (pharmafoods Isowhey complete).. (i'd forgotten due to my memory issues).

    slayadragon.. this post of yours really interested me. The closest lake to where i live (20 mins away) most summers gets infected by that toxic blue green algae you were talking about in your post. They even nowdays have to put up signs warning not to even touch the water as the situation gets so bad. I grew up as a child drinking the water from that late as that is where my towns water used to come from (back then thou, i dont think was infected with the algae??). (All 3 of my sisters ended up with huge tapeworm from this lakes water).

    i also used to go swimming in that lake every summer, right up til i got the CFS/ME and also at times went there to be cool after i got it. i are very sensitive to molds

    Im in Sth Australia
  20. slayadragon

    slayadragon Senior Member

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    Hi Tanla,

    What kind of symptoms do you have, apart from just "standard" CFS ones? Anything unusual?

    For instance, do you have any heart symptoms (feeling of a needle or dagger through heart or breastbone, heart palpitations, heart/chest pressure)? Really bad headaches? Burning skin? Cognitive disturbances that go beyond brain fog (such inability to do math or read)? Gait problems? Sudden thoughts of suicide?

    I'm not sure how these symptoms are directly due to contact with the cyanobacteria, but there seems to be some sort of connection.

    Thanks for writing.

    Best, Lisa

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