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Have you had a remission?

Discussion in 'General ME/CFS News' started by justy, Jan 13, 2011.

  1. velha508

    velha508

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    Fred's protocol

    Hi Justy, (PLEASE PRINT THIS POST OUT AND KEEP TO REREAD)

    I KNOW it seems complicated at first, I felt the exact same way. But it is doable!! Moderate to severe CFS brain fog makes it seem way more complicated than it is!!!

    First, NO, NO, NO to the methylB12 spray!!

    It is VERYYYYYYY difficult to keep methylB12 from converting to hydroxyB12 in liquid form (i.e., in water the methyl group is quickly replaced with a hydroxyl group, this occurs spontaneously with ANYYYYY light exposure, it does not matter if it in a dark vial!!). The fact that the spray has done nothing for you shows that hydroxyB12 will probably not help you.

    I did not have Dr Myhill's test, I KNOW I would have shown very similar things. I decided not to test because the results don't really help you get better. SPEND your money on the vitamins, then when you are better, but not quite there you can do some testing to try to figure out the remainder - if you follow all of Fred's advice you will find your way there.

    PLEASE read what I've written below and follow Fred's suggestions. I can not stress the turn around in my life in the past 1.5 years. I have one now, where as before I was pretending to...it is the most wonderful thing in the world to have energy again...

    What I did was print out POST #6 at the link below and then I carried it around and read and reread it again until it finally started to sink in. Focus on POST #6 for the vitamins to buy. Read POSTS #3, #6, and #23 for additional clarity.

    http://forums.wrongdiagnosis.com/showthread.php?p=191131&posted=1#post191131

    In the meantime I got started!!

    How severe are your symptoms? Are you so bad that you have allergic reactions to supplements? If you are ok taking most supplements just get started - Go to iherb and buy these essential 4:.

    Here is a cheat sheet list (print and carry it with you).

    1) Jarrow Foods OR Enzymatic Therapy (B12 infusion) - methylB12 lozenges

    it is critical to buy one of these two brands!! MethyB12 is VERYYY sensitive to light, if exposed to ANY light during manufacturing the quality is diminished and you might as well be purchasing hydroxyB12. HydroxyB12 DOES NOT work for very many people, most will find they need METHYLB12

    Work up to taking 4 per day individually, hold under tongue or lip to dissolve as slowly as possible. Keep under lip for MINIMUM of 45 minutes each!

    2) Country Life Dibencozide - adenosylB12, a second coenzyme form. Again BRAND is essential here, this is the only one tested that has had reproducible results for MANY people who've participated. Again, work up to 4 per day at 45 minutes each. YES, you can take one of the adB12 and one mB12 at the same time!!!

    3) Jarrow Foods B-Right - a b complex that contains many of the active forms of the essential B vitamins. Don't assume your body can make the conversions, especially when so severely comprimised and in the CFS state. This needs to be taken 2X's per day, breakfast and dinner.

    4) Solgar Methylfolate - CRITICAL to purchase, folic acid is not the active form, also megafolinic requires several conversion steps to become methylfolate. JUST buy the ready to use form!!

    5) NO GLUTATHIONE - in any form, this includes pre-cursors, glutamine, NAC, AND PROTEIN POWDERS!!! No rice powder, whey powder, etc.

    If you are deficient in amino acids get your doctor to order a serum aa profile and prescribe you an aa mix based on that. Make sure not glutamine or NAC is included in the mix.

    it will hold you back from getting well. Again, this has been found for MANY members of the wrongdiagnosis forum who have bothered to test it out. ALL have been sorry that they did. I did this myself, not being one to just assume I would be the same as the others. I found that each and every thing that was suggested by Fred held true for me also. He is a very careful and observant person.

    It is important to remember, as you have already seen from Myhill's test results, you are LOW in other critical mitochondrial cofactors and you should begin supplementing them as soon as you can tolerate them - some people have what Fred's calls 'start up" reactions that make them take their time getting going

    Carnitine Fumarate (absolutely the best form, when I was very ill I tested multiple brands and types and found no difference, I just wasn't well enough to notice. Upon getting better I found that Sigma Tau makes the best Carnitine Fumarate, it is patented and is found in Jarrow Foods Carnitine Fumarate and Doctor's Best Brands) I would skip the vitacost brand, seems cheaper but DOESN"T work!!

    Alpha Lipoic Acid
    Sam-e
    D-ribose
    CoQ10


    I don't want you to be overwhelmed with all of the peoples responses to your post. It is soooo easy to get side tracked. If you print this and Fred's protocol out and keep it around you can review it anytime you want and you will start to figure it out.

    I do not believe anyone with a methylation block can get better without these supplements...

    Good luck and please PM me with any specific questions.
    Velha
  2. kerrilyn

    kerrilyn Senior Member

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    I feel like I'm in sort of a remission right now. I'm not 100% healthy or cured by any means but I'm much much better than I was. I'm able to cook meals for the week, go grocery shopping etc and keep up with some housework (not all on the same day), without PEM crashes and naps (just resting).

    I get reminded of something from the past and I think, wow I was really sick. I've been pretty good since June, steadily increasing energy and less pain. Normally Jan/Feb are really painful for me and it's creeping back in but not as severe as past years. I even went through some horrible emotional stress during the holidays and lived through it without crashing. I figure if I lived through that, I can live through anything. Actually since then, I've lost 10 lbs and have started sleeping (really sleeping) on a regular cycle of 11pm - 7am which I haven't been able to do for as long as I can remember.

    I don't know who this new person is in a lot of ways, and I'm terrified it will all come crashing down again.
  3. Otis

    Otis SeƱor Mumbler

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    No, or maybe yes>

    I got sick with a mono-like illness 30 years ago. The EBV tests came back negative, repeatedly. I rebounded to about 80% (thought I was all better) and then have had a gradual and ever-accelerating addition and worsening symptoms so I perhaps an odd case. A significant remission and then a relentless march to take away the last 80% of my functioning.

    It's really only with the benefit of hindsight that I realize that I didn't really recover all the way when I first got hit 30 years ago. I was told at the time that I had activity induced asthma. What was really going on is that I couldn't tolerate aerobic exercise which other patients have indicated is a problem with them. Prior to connecting these dots I have said I've had a gradual onset, with progressive symptoms, and no remission.

    Pain came in fairly late, although I was still healthy to work at that time. But pain is here and it seems to be here to stay.
  4. justy

    justy Senior Member

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    Velha - sorry i dont understand why the Methyl spray is a bad idea. It was really expensive so i dont want to just throw it away. Also have been prescribed Glutathione by Dr.Myhill, why is this a bad idea? my GSX glutathione was very low. I havent started taking it yet, but was planning to. I have had severe reactions to medication and to some supplements and homeopathics so it is taking me a long time to introduce all the ones she recommended - mainly because i am nervous about it.

    Kerilyn - im so glad you are feeling so much better. For me the kind of remission i am talking about is where you think you are completely recovered (even though you may not be) During my remission i could rush about, do lots of housework, look after 4 kids etc etc and still feel fine. Again maybe not the stamina of fully well people but pretty near it for normal living needs.

    Otis - i was also told i had exercise induced asthma as a child, but now after many lung problems my lung specialist says my test results are too good for an asthmatic (although i do now have a fibrotic band in my lung after repeated infections and pneumonia for the past 30 years) What they couldnt explain is why i get severe chest pains when walking fast, running or walking up steep hills - have had this for as long as i can remember and of course all the heart scans come back normal. So now after 35 years of asthma they are saying maybe its not that. And i could never tolerate aerobic exercise - unless it was swimming. Even before i was officially ill. I know what you mean about connecting the dots......it takes time doesnt it?
  5. kerrilyn

    kerrilyn Senior Member

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    I understand what you mean. Currently I'm having some issues with pain and POTS symptoms still but the CFS stuff is way on the back burner. I can rush about and do lots of housework etc and not crash. I'll have pain but not crash. But I'm not going to even attempt to live life with force full right now because I think I would be setting myself up for failure. At some point I would crash. I think the concept of pacing, which was so hard for me to wrap my head around for so long, is finally sinking in. Even though I'm feeling much better, I can't set the bar too high and expect not to crash. I'm probably still doing too much too soon, because it's hard not push your luck so to speak and enjoy some new found freedom :D
  6. velha508

    velha508

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  7. velha508

    velha508

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    Hi Justy,

    I know this wasn't directed at me, but this is the kind of remission I have now. I work full time, I take care of my household with three pets, look after my young children and still feel absolutely fine!

    I continue to amaze myself. Prior to having children I never went to the store. I worked and came home, I just didn't ahve the energy to shop. In November, after a long busy day, I decided to go out shopping with my young children. I went to THREE different stores with the whole in and out of the carseats thing (YOUNG children) and wanted to keep going but by then it was late and the kids were getting tired and cranky...it was amazing to me that I would ever try to do something like this, but then I didn't need to try, which is really the whole point of being well - it was easy and I just did it, like a normal person would without thinking about it, without 'working' at it...afterwards, when my husband said I was crazy and he (very healthy) wouldn't have done that is when I realized what a big deal it was, especially that it all came naturally...

    This is only ONE year after starting Fred's protocol. One year before I couldn't carry my children into daycare without heart palpitations and I had to get in home care for them...I don't feel any need to pace myself, though I did use instinctive pacing to get tomy first remission years ago...

    Velha
    Sparrowhawk likes this.
  8. Rsmy59

    Rsmy59

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    Hi Justy ~ I got sick in 1983 at the age of 24 and was extremely ill for about 1 1/2 years. I slowly got better and, while never 100%, was pretty well from about 1987 through 2000. During that time, I had various issues along with plenty of low energy days, but I was able to work full-time, work out, travel, and take care of my family. Around 2000 I started getting breathing issues (which scared me to death!) and it's been a downward spiral ever since, especially the last 3 years. I suffered severe flu-like fatigue nearly all of last year but that has lessened lately and I've been mainly dealing with fibromyalgia pain and a lot of digestive problems. I think my relapse is connected to the onset of menopause, but I'm not sure. During my remission, I was afraid my illness would come back in full force one day and it did, but I'm hopeful to get back to the level I was -- 85% seems awfully good right about now!
  9. justy

    justy Senior Member

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    I agree, 85% seems marvellous! Im beginning to wonder now why it is that some of us get so much better and then get very ill again later on. The clu for me so far is that no one who has said they have had a long remission felt 100% well. So we obviously are getting a high degree of health back, but still have an underlying condition, which for some reason is then reactivated to a higher degree.
    My relapse was linked to measles and then high steroids (affecting hormones and immune) i have heard of many women who become more ill around menopause, again hormones kicking it off.
    This could still tie in with XMRV i guess, but i dont know how the getting better does.

    Also ties in with research that showed (Bells?) that those who say they are recovered still have significant amount of symptoms. This just leads me back round in a circle to believeing that we can never get rid of this disease. But i wouls love to know how to get it back into remission again!
  10. SOC

    SOC Moderator and Senior Member

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    Here's a speculation based on anecdotal reports here:
    Suppose that XMRV causes only 25% (or less) of our visible symptoms. Suppose the rest are caused by secondary infections of all kinds.

    Now, suppose you get a bad EBV infection. You're really sick for a long time because XMRV is impairing your body's ability to fight it -- not preventing it, just making it harder. Unfortunately, all those B and T cells running around have spread XMRV.

    Your immune system kicks the EBV into latency (finally) and you feel a lot better, but not 100% because the XMRV has spread and is either, 1)causing some symptoms, or 2)upregulating your immune system. You are in "sort of remission". This could last for years.

    Over time your immune system is degraded by XMRV or exhausted from constantly fighting the XMRV it can't beat. You get more immune system insults -- colds, flu, the usual stuff. Your immune system gets less and less capable of handling infections. Eventually latent infections start reactivating because your immune system can't keep them in latency. You feel like crap again because the secondary infections are active. This time you can't fight them and you never get back into remission again.

    The original bad infection could probably be any of a number of high immune demand infections: Lyme, EBV, chicken pox, etc.

    Or, instead of a single initiating event, a series of immune insults (including stress) could cause enough degradation of the immune system.

    This is just speculation, of course, but it could explain the long remissions that are not cures.....
  11. free at last

    free at last Senior Member

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    I agree Sick of cfs, sounds very plausable, and fits so many on here. The association with a viral trigger leading to xmrv becoming a huge problem, can not be underestimated, as i believe it explains 1 why so many dont have a problem carrying the virus, and 2 how very long periods of good health carrying the virus. ( talking possibly years here ) can suddenly change into the illness ME/CFS we all so love.

    Also fit into this the possiblitty that some of us might to a degree make this scenario worse or more likely to occur ( meaning some xmrv positives who have a viral trigger may not develope ME/CFS ) by sort of priming the immune system to dysfunction in the xmrv secondary viral trigger idea.

    what primers might make this more likely, well researchers have suspected that drugs, alcohol, viruses bacteria, could be triggers for auto immune disease. ill add into that, stress or pushing oneself to hard, not enough rest ( both physically and mentally ) poor diet, which added into all theses equations is just the sort of immune weakening primers that could really make all the difference between a immune system that copes, and one that just completly starts to dysfunction, the kind of dysfunctions could be a weakeand poor performing immune system, ( the primer theory, + xmrv ) a overactive immune system trying to fight off all these viruses, and the persistent xmrv threat, as now seen by the overactive immune system.

    I belive auto immunity might actually arise out of this sorry picture shown here. One auto immune disease attacks the glands, and ive mentioned that here. i have just been to the DOCS as my kneck glands are swollen on one side ( hurts like hell ) she said she thought it was either MUMPS or a virus attacking my glands ? does anyone know if the MMR vaccine for babys can transmit live virus through say nappy changing, as my granddaughter was vaccinated a couple of weeks ago ?

    Regardless ,i do belive the immune dysfunctions in some of us, can have varying degrees of ALL OF THE ABOVE if xmrv turns out not to be it, then as HARVY ALTER said, something else must be ?

    My doctor asked me if i had any conditions i said CFS, she said WHAT, i said chronic fatigue syndrome she then stared at me BLANKLY, and continued talking as if i hadnt even said it ( had she seen the ME/CFS Training video for GPS that morning lol )

    Anyway i wasnt having that, so i continued to discuss my onset of ME/CFS describing flu like attacks with temperatures ( lots of them with large gaps bettwen attacks ) but way to many in the course of a year to be real influenza. then i tried to describe the temperatures stopping, as the illness became chronic.

    3 times she ignored my attempts to talk to her, changing the discussion and dismissing it, and trying to move on, just like the training video teaches them. coincedence ?

    Either shes seen it, or doesnt consider ME/CFS as a real illness. then what the hell has torn my life apart for 16 years.

    i know illness belief. like i belive i have painfaul gland swelling in my kneck, but dont really ? only she confirmed that is true, so why am i mistaken about the the other symtoms and illness i tried so hard to relay to her?

    One reason.BECAUSE ITS ME/CFS thats why.

    Gods speed to the WPI. the sing, and lipkin studys. If xmrv is not our truth, in the UK, untill we prove with science what is. Then more years of neglect, dismissal, abuse. and crimes against sick patients will prevail, based on nothing more solid than opinion. and ignorance to the many studys showing this is absolute nonsense, and always has been.
  12. Bethinoz

    Bethinoz

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    I Have just had over 12 months of good health was working 8 nursing shifts a fortnight and had returned to triathlon training and racing with the family. Then in October had a crash via a viral infection now 3 months into it and at about 80% I can't put in words how harsh it is to be well and fully participating in the world to be back to just slogging my way thru a work day and coming home so tired that I can't speak! I miss activity and a lot of my social life was meshed with the club! I have these pangs of despair and there is so much energy needed to focus on healing

    Beth
  13. justy

    justy Senior Member

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    Yes Sickofcfs and Free, these seem like plausible theories, and may also explain why healthy controls, and healthy family members may be XMRV positive and not be showing any signs of illness. On the other hand it may need to be a bit more than a regular flu or stress as surely those healthy controls arent all super fit and well and must sometime catch a virus or have a load of stresses in their lives. Surely thats just normal? I dont know, it could be how ;long you have had the virus i guess - wether it was transmitted from birth or caught later perhaps. I know i am in the group of people who had a lot of illnesses as a child, but then i know we werent all like that.

    I feel like these circles of debate are somehow going close to the truth and that hopefully their will be more breakthroughs this year. Everything i read leads me to believe that some very serious scientists have got interested in M.E and arent going to stop at just XMRV if it doesnt pan out. I have all my fingers ant toes etc crossed!
  14. free at last

    free at last Senior Member

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    Yes your Right Justy, the order of things that can lead to immune dysfuntion could vary from paitient to patient, but there are so many stressers that can act on the immune system ( ill throw some more into the mix here ) Mold toxins, chemical toxins, depression. that of course some people will be leading heathier lives in many many respects, and maybe on a lot of different levels, Diet, stress, alcohol intake, drugs, chemical exposure, proper sleep patterns ( sleep is a nutrition for the immune system ) mold exposure, deppression, other medical conditions one might have, this long list could really be quite bad for some people, while others who are to a large extent only affected minimally by them, may not set themsleves up for the immune dysfunction that will come later with the xmrv, and viral trigger that just pushes the immune system finally too far. I know what you are saying justy, and it is probably much more complicated than the simple picture i paint. but clearly there are so many factors, then obviously some will to a large degree will be affected by them while others not to the same destructive level. maybe like a pack of cards, once the deck falls everything there after starts falling faster and faster, because the seed has been set for this type of immune dysfuntion to take hold.I could be completely wrong, but for a while now i have started to belive its these types of things, that have the potentiall to lead to ME/CFS Lol if i had said this to my doctor, i would have been removed from the premises.
  15. ukxmrv

    ukxmrv Senior Member

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    Question for Velha here (I'm posting to the group as others may be interested as well)

    Is there a thread that compares the treatment protocol you posted to the Yasko one anywhere that I can read on this forum?
  16. justy

    justy Senior Member

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    you can find Rich Vanks explanation of the differences on this thread (2nd page) sorry i cant work out how to link to a specific thread.
    http://http://forums.aboutmecfs.org/showthread.php?8675-methyl-B12-spray
  17. ukxmrv

    ukxmrv Senior Member

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    No worries Justy, I did eventually find it. I've been a non-responder to B12 in the past so always interested to hear about other types and methods.

    Thank you!

    XMRV+
  18. SOC

    SOC Moderator and Senior Member

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    I suspect, in addition to everything else, that those of us who progress to ME/CFS will be found to have some gentic predisposition. I have no idea what it might be, but the family relationships make me suspicious. For example, in our household my daughter and I have ME/CFS, but we were fundamentally healthier and more active (before ME/CFS) than my husband who doesn't have ME/CFS. IF we have XMRV, and IF XMRV is even slightly contagious, it's hard to imagine he would not be infected as well. Of course, we don't know, but it's amusing to speculate.

    I agree; we're going to have serious breakthroughs in the relatively near future. Hopefully we can stop speculating. :)
  19. Cloud

    Cloud Guest

    My onset of ME/CFS followed a period of extreme stress and then the Hep B Vaccine. I had no acute infections around that time. I posed this question to Dr Judy: My theory is that I had contracted xmrv many years prior to onset from sources yet to be determined. My very strong immune system kept the virus in latency until I encountered a prolonged period of extreme stress which suppressed my immune system and then the Hep B vaccine was the final insult causing enough immune trauma allowing xmrv to activate and then over time progressively get the upper hand. Her response: "Your theory is a very plausible explanation and the primary one that we are pursuing. Your theory also suggests that we can help the immune system get the upper hand again with immune modulating drugs and drug which will eliminate active virus".

    Following onset in 1993, I began a continual progression of this disease that I have learned over time was being accelerated by stressors such as physical and mental stress, acute infections, vaccines, etc....basically, the same kinds of things that had caused onset originally. If only I had known 15 years ago what I know today, I may have been one of those people having remissions, or I may not even be sick at all. I believe it is an issue of my immune system getting the upper hand again, and then living a life that will support sustained viral suppression and immune health.
  20. I was very sick for 15 years after a bad flu. Went up and down a bit, mainly resting on the bed, out to town in a wheelchair on good days,looked after by family, then did start to improve. then I started taking imunovir- the antiviral also called isoprinosine. Came 100% well after 16 months and for next 5 years felt great, gym etc. PEM had been my worst problem, lots of relapses caused by very mionor exercise. now I could do anything and no PEM Cut back the imunovir after 5 yrears to just 2 a day and then after lots of stress and doing too much have had a bad relapse - but not as bad as my initial one. Still housebound and bed bound, only able to read and rest, move about the house carefully. Been back on the full dose imunovir now almost 2 years and am definitely feeling a change towards less head and other problems - feel normal and have periods of feeling energetic. but am still pacing myself. I know Nancy Klimas has done work on the antiviral effects of imunovir so I'm definitely a fan. I'm believing that it will do its magic again. but who knows if this was the reason I got better?

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