Help! Vitamin C IV made me WORSE. Devastated.

Discussion in 'Fibromyalgia and ME & Chronic Fatigue Syndrome' started by bluegnu, Oct 14, 2009.

  1. bluegnu

    bluegnu New Member

    Hi -
    Wondering if anyone can help, or knows someone who can help. I've had CFS with ups and downs for 12 years. I have been getting better over the years and had a really good summer. On the advice of my docs, I tried a series of high dose vitamin C treatments - 6 over 2 weeks at 75g. This was supposed to kill the underlying viruses/retroviruses.

    I have been really, really sick - mostly tired - ever since. I can barely make it to work, much less hold up a marriage and a life. And it's definitely attributable to the Vit C treatments.

    I am devastated. Can anyone offer help? I don't know what to do to get the little energy I had finally regained back.

    thank you.
  2. spacee

    spacee Member

    There is a possibility that the pathogens are dying off and the feeling bad is a result of your body ridding it. Beta Glucan used to be sold here to help with that but I don't see it in the catalogue.

    Drink lots of water and rest. I think you will be better when it all passes.

    When was your last IV.

    When a person gets sicker after they take to something that kills a pathogen..it is called a Herx (after the man who discovered it in the 1940's).

    I am so sorry you are being laid low. Hoping it is a good sign.

    Spacee
  3. bluegnu

    bluegnu New Member

    I hoped for the first month afterwards it was a Hex reaction - but it seems to be something more - like it threw my body for a loop - more than just die off. My last IV was early August.

    I appreciate your response. After 12 years of dealing with this in isolation, it's nice to hear kinds words.
  4. AuntTammie

    AuntTammie New Member

    hmmmm, I was thinking herx reaction, too

    it would not last that long, but perhaps you did have a herx reaction and it caused a flare and that is what you are dealing with now

    just an educated guess
  5. Slayadragon

    Slayadragon New Member

    My god, that's a lot of Vitamin C!

    I was getting iv's of 12.5 mg (25 cc's) for my mold reactivity for a while. Those were great.

    I increased to 25 mg (50 cc's) and got somewhat of a die-off. That just happened for a couple of sessions.

    But I never went higher! And I was doing it only twice a week.

    Sometimes it's hard to put Humpty Dumpty together again, unfortunately.

    Who's your doctor? What does s/he say about this development?


    Lisa
  6. m1she11e

    m1she11e New Member

    I was going to do the high dose vitamin C protocol too. I started at 25 and would work up to 75.

    The day I had my first IV at 25, I was feeling good when I went in. I left feeling a little tired and nauseated. By the next day I was full out couch bound. My first thoughts were die off, etc. It seemed to be beyond that. I was totally wiped out from head to toe. Every bad symptom was flaring up. I was thinking Mercury mobilization as well.

    I couldnt believe that one Vitamin C IV could knock me down so hard, but it did for at least a couple of weeks.

    Some one on Cort's blog gave me an interesting answer to what might have happened but it was not anything about a herx or Mercury. If you can find his message boards (I dont think I can put a link here???) you can find the vitamin C thread. It was Jen who gave me a very educated opinion as to what happened. Try to check it out.

    Sorry you are dealing with this. I was quite surprised as well. If anything, I thought it would just do nothing. Didnt expect it to make me sicker!! I did pull out of it though...

    Good luck!
    Michelle
  7. bluegnu

    bluegnu New Member

    Sorry - I don't know what his message boards are. New to seeking help around my CFS - although very NOT new to CFS :) would love to read the post if someone can tell me how to search for it.
    Cheers,
    And thank you!
    Anne
  8. m1she11e

    m1she11e New Member

    This should get you to Cort's blog and the thread on Vitamin C.

    http://forums.aboutmecfs.org/forumdisplay.php?f=13&order=desc&page=4

    Let me know if it works. I hope it answers some questions.
  9. spacee

    spacee Member

    I think you can just google "cort" and it will take you to his site.
    Then you could find it.

    I am really tired of this DD too. I just wish once a year one person would tell me that they were sorry that I was sick. I am talking about family. I know everyone here is sorry that we are ALL sick..:).

    Glad you got some good input...nothing like the voice of experience.

    Hugs,

    Spacee
  10. Svette_Palme

    Svette_Palme New Member

    That is very interesting therapy blugnu, sorry to hear you are feeling so punk from it.

    Sometimes Vit C can interefere with calcium uptake, I wonder if that could have anything to do with why you are feeling worse? But I think the herx reaction is a likely scenario too.

    I take about 10 grams of Vit C a day orally, and have been for 3 years. No problems, and I have the idea that it gives me a temporary pick-me-up.

    Are you continuing to take Vit C now? It would seem appropriate to continue it orally at least, but do whatever your doctor says of course. Whatever die-off you might have had could come back, and all that IV Vit C and your suffering now would be for nought. [I hope that doesn't sound depressing].
  11. m1she11e

    m1she11e New Member

    Blue- I realized that the link i gave you does get you to the page with the Vitamin C IV thread but does not include the part where I started having problems. I must have asked in another thread and couldnt find it.

    I sent a personal message to the person who answered my question to see if she would answer again and let me copy and paste it here. It really made alot of sense. If any of this makes any sense that is...

    I will paste it here when I hear back from her.

    Spacee- I could relate to wanting some one in the family saying "sorry" just once a year. ( I think that is how you worded it) The longer I am mainly housebound, the more I feel people just dont get it. It seemed when I could still work and go to some social events people were more understanding of the tired times. Now it is like I am so over board sick that I feel like I am being doubted or kind of forgotten. I believe I could be lying on the couch with blood running from my head and my daughter would say "so, what did you do today," as she was walks around my lifeless body.

    I dont expect people to rub my head and say "you poor, poor dear," but it amazes me how people just want me to be "okay" but they dont want to hear about it or do anything to help or try to understand. Maybe it is just too hard for healthy people to ever understand.

    I would give anything to be healthy and be in a position to help others!

    SIGH...
  12. dolche

    dolche New Member

    Hi

    I had the same experience with vitamin c iv therapy. I did 12 25cc of vitamin c as well. I feel terrible. I thought it was herx but it's been two months. It must be a bad flare. Are you better? How long did it take you to get back to baseline.


    May God bless us all......

    Dolche
  13. IanH

    IanH Active Member

    I worked in a team looking at high dose ascorbate (HDA) many years ago. I have always been against using it for ME/CFS.

    1. their is little evidence that it is an antiviral

    2. people with MECFS have ATP synthesis dysfunction due mainly to mitochondrial dysfunction (I have spoken about this on previous posts). some of these people have a glucose-6-phosphate dehydrogenase deficiency (not necessarily genetic) so this should be pre-tested in all cases for HDA.

    3. because ascorbate is a chelating agent, some individuals may experience symptoms of low serum calcium. (typically tremor, vertigo and nausea)

    4. it is contraindicated in renal insufficiency and could possibly cause kidney stones. (although the evidence for this is weak)

    5. sclerosing of peripheral veins occurs from intravenous push but not from drip yet many doctors are giving the HDA by intravenous push. Also PWME can have low blood volume so this exacerbates this reaction due to high osmolality of the HDA. (Would make the ME patient feel sick for several days, possibly weeks).

    6. HDA can increase the oxidation of lipid peroxides. These are known to be a problem in people with ME and with FM. This results in the increased level of ROS which the mitochondria cannot deal with properly in PWME. This will make the PWME feel quite sick and weak and have a stronger reaction to toxin or xenobiotic exposure and therefore use up pools of glutathione.
    [This Message was Edited on 01/16/2013]
  14. harrysmom

    harrysmom Member

    I have had CFS for 16 years. The more I take of ANYTHING the worse I feel. Could be a common sense thing here that some are missing. I think anything, including Vitamin C, in such a large dose would be harmful, not beneficial, and feeling so bad might just be Nature's way of telling folks not to tax themselves with so much stuff we don't really need and may be acting like poison to their already screwed up systems.

    I know some people will contradict this with all kinds of statistics and studies, but sometimes the simplest explanation is the right one and there's a lot to be said for some common sense. Just sayin'........
  15. neoplus1

    neoplus1 Member

    A lot of individuals over in the Chronic Lyme groups had been doing high dose sodium ascorbate. So many people were getting worse, but most kept assuming a Herx reaction.

    More or less, it doesn't seem to have helped anyone and many are worse off now. We can't always assume a Herx or Detox to everything. Sometimes we are feeling worse because it is making us worse.

    -Steve
  16. dolche

    dolche New Member

    Thanks for your response.

    I'm not sure if my oxidative stress is from vitamin c or hydrogen peroxide iv?maybe both. I had total of 26 bags consecutively. I was desperate and believed my doctor that this could get me better. I feel so foolish.
    I'm still feeling awful entering my third month. I am mostly bedridden. I had a four hour window before but know I'm really bad. I'm so scared. Do you think my ATP will improve w time?what can I do to improve it? Any ideas. I'm stressing out.....

    Dolche
  17. dolche

    dolche New Member

    Thanks for your response.

    I'm not sure if my oxidative stress is from vitamin c or hydrogen peroxide iv?maybe both. I had total of 26 bags consecutively. I was desperate and believed my doctor that this could get me better. I feel so foolish.
    I'm still feeling awful entering my third month. I am mostly bedridden. I had a four hour window before but know I'm really bad. I'm so scared. Do you think my ATP will improve w time?what can I do to improve it? Any ideas. I'm stressing out.....

    Dolche
  18. lesliesue

    lesliesue New Member

    Hi Everyone,

    I have had Lyme disease, CFS and fibro for about 25 years. About 5 years ago my then-doctor put me on the vit. C and peroxide. The pain was excruciating. I have never felt anything like it before or since. She had me on the push, but I could not tolerate that. So she put me on the drip. That was awful, too.

    Dolce, I really understand what you mean by feeling foolish. I should have put an end to it immediately. But I trusted the doctor. As a result of this my veins went deep into my arm and having blood taken is a nightmare now. Ian, Did you call it sclerosing? Hardening of the veins? I think that is what happened.

    I really believe with this Vit. C, if a patient doesn't feel much, much better immediately- quit doing it. I had way too much faith in my doctors. Steve, you are so right! Not everything is a herx. And Harrysmom, same with me....it seems everything makes it worse for me, too. My husband says just stay away from doctors, then maybe you will get better.

    Dolce, I guess it is different for everyone, but I am sticking to the simplest most natural remedies these days. Juicing, nutrient dense foods and exercise when possible. I wish I had some surefire, quick answers for you. I really hope you feel better soon.

    Love,
    LS
  19. harrysmom

    harrysmom Member

    I'm with you....I believe the improvement I've gradually gotten over the years has been basically through: stress reduction, sleep improvement, elimination or great reduction in alcohol, caffeine, sugar, bread and dairy products, taking a small amount of vitamin B supplements and Vitamin D, eating non-processed, healthy foods, plenty of vegetables and some fruit, drinking lots of water and green tea, and pacing any activity so as not to push past an energy limit. Live a quiet, low stress life, work on sleeping, rest between small activities each day, take something that works for you for pain and anxiety and don't take large amounts of every supplement that people try to tout as THE ANSWER because there is no one answer for everyone with this condition and it certainly doesn't come in the form of overloading our overly sensitive systems with unproven or questionable concoctions.

    I have been to doctors such as GP's, rheumatologists, neurologists, internists, especially when I first got sick with CFS and except for helping me calm down and sleep with some Xanax...tiny dose....and Ultram for pain, not one of them has ever known anything to do that would help me. Everything I know I learned on my own from my own experience or from reading on-line and in books by doctors who have dealt with CFS. Today I had to see my GP for something non-CFS related and he asked me if I took anything for the pain...it was something to do with my knee....and I said I had cut an Advil in half and taken it and he shook his head and made reference to the fact that that wasn't much medication and I said I knew, but after seeing him for around 15 years he ought to know by now that I cannot tolerate normal doses of anything. As much as our doctors see us and hear us tell them things it just doesn't register, I swear. Or they don't want to deal with people who aren't the "norm". I don't know, but I will say that although I know there are things doctors can help us with and I would never say don't go to a doctor if you feel you really need one for something, I do know there aren't many out there that really have a handle on the CFS and can be of much help.

    Harrysmom
  20. lesliesue

    lesliesue New Member

    ...I agree with everything you wrote. I have had doctors basically fire me because I wasn't getting better. Because I am not the norm. There are some docs that care deeply and definitely help with some things.....but I am starting to believe more and more that conventional meds and surgery, in some cases, just lead down a path to worse health. I admit I am a person that desperately wanted an easy fix....some medicine that was going to make it all better. It has taken a lot of trial and error to realize that is never going to work for me and my health is in my own hands.