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Anyone improve from bed/housebound to high level of functionality?

Discussion in 'General Treatment' started by Ocean, Oct 24, 2011.

  1. LisaGoddard

    LisaGoddard Senior Member

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    The max of 3 capsules was just gutdoctor's recommendation so don't place everything on it. It took about 2 weeks for me to feel the benefit. I'll check this thread from time to time so please do let me know how you go. All the best, Lisa
  2. penny

    penny Senior Member

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    I've had some improvement lately, maybe enough to 'qualify' for putting my story in.

    I've been sick for about three years, so not so long I guess... The first year + I tried to push through (didn't know what was wrong yet), and keep working as much as possible, though not terribly successfully. I went on disability leave for the next year and was predominately at level 2, sometimes 3. A couple of brief (a day or two, usually no longer) spells of being able to do a bit more - though not work.

    My symptoms when I was at my low levels were: fatigue, extreme cognitive difficulties, horrible short term memory, OI, muscle pain, joint pain, sleep dysfunction, hypersensitivity to sound/light/touch, gut dysfunction, muscle cramping, muscle weakness, muscle unresponsiveness (like the communication between my brain and muscles was broken down), tingling/numbness in muscles, that's all I can think of...

    I returned to work still in pretty bad shape. It was that or apply long term disability and I didn't feel like I was 'ready' to give up my career without one last 'try' - a stupid gamble perhaps but that's what I did. Also honestly I was more afraid of navigating the maze of applying for LTD than trying to go back to work, which is sad. The first 5 months were miserable - I couldn't drive myself to work and a 'good' day was when I could fake it (sit up straight and speak somewhat coherently when spoken to) most of the day and I didn't feel like crying from pain and exhaustion at the end. I did not expect to be able to do it much longer.

    About four months ago I realized that I was starting to feel a bit better, I started driving myself to work and 'good' days started to involve some actual productivity. This trend has continued. I think I'm probably at a 7 or 8 the last few weeks. While four months isn't really 'long' it's the longest improvement I've had by far and I seem to be continuing to improve, so I am cautiously hopeful. Fingers crossed. Knock on wood.

    My current protocol (this almost exactly what I've been doing for about the last 6 months, and some of it for at least 8, parts longer):
    • LDN .5mg (I tried a larger dose but it made me depressed, groggy and sleepy)
    • Glutamine 2g (two separate times I've started this at 2g and both times had a noticeable improvement in mental functioning. The first time I thought, "if 2 is good, 4 or 6 must be better!" and I lost the benefit. So this time I'm staying at 2.)
    • Baclofen 10-20mg (helped with muscle cramping/pain and I believe improved deep sleep, especially at the 20mg dosage)
    • Lysine 3g (1g wasn't noticeable, 3g a day was)
    (These first four have had the most noticeable effect for me.)
    • Ambien 5mg
    • Aleve twice a day (reduces inflammation)
    • Salt tablets (6 thermotabs)
    • Serine 600mg
    • Magnesium
    • Potassium 600mg
    • Mb12 1mg sublingual
    • Zinc 25mg
    • Milk thistle
    • Vit. C
    • B-complex (very basic, no folic or folinic acid)
    • Massage
    • Acupuncture - I don't know much about this but there seemed to be some correlation between gradual improvement and when she started treating me for "dampness" (whatever that means :)
  3. Freddd

    Freddd Senior Member

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    Hi Lordugh,

    I had all of these but not black and white vision, just very blurry vision, and am healed now. It can all be cleared up in a year or so if you don't let it keep going on and get entrenched.
    http://forums.phoenixrising.me/showthread.php?11522-Active-B12-Protocol-Basics
  4. rydra_wong

    rydra_wong Guest

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    Freddd, you didn't actually SAY, but we also know you could not walk for awhile there and now you can...the most important improvement!

    I was interested to see #10 that you couldn't see colors - I experienced that often when I was anemic. No one else would believe me.

    Rydra
  5. Freddd

    Freddd Senior Member

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    Hi Rydra,

    I was interested to see #10 that you couldn't see colors -

    I don't know where you got that. Quoteing lordugh, but not the b&w thing. The vision impairment I hds was not being able to focus my eyes. I couldn't taste thongs well and many flavors disappeared entirely. I could see blurry colors, very blurry.

    I had various impairments to walking at various times. The morning I woke up crashed and for some months after I couldn't balance, even on 2 feet, severe vertigo and lack of foot control. I crawled to the bathroom. At other times I could not feel my legs or know where they were and had foot drop and tripped over my own toes and my knees would suddenly go limp dropping me to the ground. At times I was much closer to a wheelchair than I had ever wanted. When I was able to stand and not fall right over I could barely make it 50 feet.

    A couple of years ago I redid a roof of a two story house. I can walk miles and miles, up and down hills and all that. I much prefer that.
  6. LisaGoddard

    LisaGoddard Senior Member

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    hi Ember,
    When I woke up Sunday morning I remembered that in the very early days I had taken colostrum along with the lactoferrin. I very soon found, however, that the lactoferrin on its own was sufficient for the benefit. I also tried to remember what I felt like on the first two weeks on lactoferrin before I felt any benefit - ie whether I had any herx symptons but couldn't recall. My expectations were so low that I didn't really take any notice. Anyway thinking of you.
    Lisa
  7. Ember

    Ember Senior Member

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    Thanks for your thoughts, Lisa!

    I spoke with a pharmacist on the weekend who was of the opinion that the lactoferrin I'm using (AOR Classics Series) has insufficient quality control. (She doesn't sell lactoferrin herself.) Looking up gutdoctor.co.uk, I notice that they recommend taking Immunecare Lactoferrin capsules on an empty stomach with a large glass of tepid water. AOR, on the other hand, recommends taking it with meals. So I've started taking it on an empty stomach now. Perhaps I'll alternate!

    It sounds as though you didn't take the colostrum for long. At the end of a week, I haven't noticed any results yet. Early days though...
  8. Vegas

    Vegas Senior Member

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    -If you did improve from a very low level to a much better level of functionality, what did you do to get there, or did it just happen on its own?

    Methylation supplements + frequent dose oral chelation, esp. the latter. the B12 & folates helped counter some of the effects of mercury, but the chelation is resolving the root problem.


    -What level where you at at the lowest and highest?
    2 currently 7-8

    -How long did improvement take?
    16 months

    -What were your primary symptoms when at low levels?
    severe fatigue, brain fog, muscle weakness, reactive hypoglycemia, body aches, post-exertional malaise, and about 50 or so more symptoms.

    -Did you have coexisting conditions that made recovery harder or more complicated?
    no just the typical dysbiosis & some stubborn localized infections. Of course I've never been one to pursue diagnostic evals, so surely there was more to the equation.



    0 - Bedridden constantly
    1 - Mostly bedridden
    2 - leave house once a week, concentrate 1/hour a day
    3 - leave house several times/week, two hours work/activity at home a day
    4 - 3 to 4 hours of work/activity a day
    5 - four to five hours/activity a day
    6 - six to seven hours/activity a day
    7 - able to work full-time but with difficulty
    8 - near-normal activity level but still symptomatic

    9 - normal activity level, mild symptoms
    10- fully recovered[/QUOTE]
  9. globalpilot

    globalpilot Senior Member

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    These symptoms sound very much like mine and yet a trial of thyroid hormone (both t3 and thyroid itself on separate occasions) made me feel very hyperthyroid.

    You mentioned basal body temperature. What range were you measuring in ? I am at about 97.6-98 using an ear thermometer.

  10. globalpilot

    globalpilot Senior Member

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    Wonderful Vegas. Congratulations.

    [/QUOTE]
  11. Freddd

    Freddd Senior Member

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    HI GLobalpiolet,

    Fortunately the active b12 protocol deals with all those symptoms except I'm not familiar with te BW vision thing. I couldn't focus my eyes though. Some people also say the mb12 and/or adb12 make thgem feel hyoer and ion that case it is usually the nervous system working better and ATP production raming up. A period of feeling hyper conpared to ultra fatigued appears inevitable on the way to normal.
  12. globalpilot

    globalpilot Senior Member

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    It didn't touch my symptoms Freddd. However, my glutathione went back up to normal (low end mind you) on Rich's protocal. On methylB12 my SAM and SAH were very very high. They are back to normal now since stopping. My symptoms are more likely due to the enterovirus in my gut.

  13. LisaGoddard

    LisaGoddard Senior Member

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    Hi Ember,
    No news from you so guess it hasn't worked for you. If you are concerned about the quality of the lactoferrin, I can send you some of gutdoctor's which is good quality. i have some I haven't used and probably won't again. Of course, it would be no cost to you. let me know.
    Lisa
  14. Ocean

    Ocean Senior Member

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    Wow, Vegas, what a huge improvement. What does the chelation involve? And was there any reason you chose to do it, testing etc?
  15. markmc20001

    markmc20001 Guest

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    Muchas gracias! I'm going to look into bartonella.
  16. Vegas

    Vegas Senior Member

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    Nothing complicated, you just remove any ongoing exposure, e.g. amalgam fillings, you wait a few days and then you start taking an oral supplement every 3 hours(depending on the chelating agent) around the clock for three days at a time or longer. The critical piece to the puzzle is to continue the doses very regularly to avoid fluctuating levels of the chelating agent. Acceptable chelating agents include DMPS (which is an RX med) DMSA (non-prescription), & Alpha Lipoic Acid (non-prescription and widely available.) The ALA cannot be safely used until three months after removal of the silver fillings or other acute exposures, like flu shots. You basically just set a bunch of alarms, and start taking the pills around the clock. It's neither complicated nor expensive, and is very safe if done properly. Of course I don't want to oversell it, it's pretty challenging at times.

    I choose to have my fillings removed in part based on lots of clues, like a familial history of reactions to vaccines & suffering symptom exacerbation after having an amalgam filling placed. RVK's insistence that Hg is probably the best characterized explanation for subnormal glutathione also played a large part in my decision to get them replaced. It took me a while to come to this conclusion because it does sound so far-fetched, but after reading a couple hundred recent journal articles and text chapters on Hg toxicity, it became obvious that Hg theoretically could have and probably was at the root of my illness. It was a bit of a leap of faith, but I was right. Honestly, I'm still scratching my head in disbelief that I actually figured this out.
  17. globalpilot

    globalpilot Senior Member

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    I'm interested in yoru comment that Rich says mercury is the best characterized explanation for subnormal glutathione. Ie haven't actually seen him see this. Do you by any chance remember where he said this ?
    Congratulations. Your leap of faith sure paid off. I'm also chelating with DMPS, Andy Cutler style. I think everyone deserves a chance to try chelation b/c so many do benefit.

    GP


  18. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

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    There are a LOT of people using ALA very safely. I have a couple of silver filling left. My level of mercury is nill. It is fantastic for so many reasons, not just for detox but for POTS and CFS since is is so good for so many things.
  19. Jenny

    Jenny Senior Member

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    How do you know your level of mercury is nil, Sally? I haven't yet come across any tests which have any evidence of reliability.
  20. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

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    Nothing is ever perfect. Blood is the best I have heard of. Can't remember the exact name.

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