Help! Vitamin C IV made me WORSE. Devastated.

Dianna H

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]
 

Dianna H

Member
Dear IanH,
I don't totally understand all you wrote but I go by my instincts and I'd like to know more about using this information for a treatment strategy. I have done so many treatments and nothing has worked. I seemed to get this debilitating fatigue after a series of surgeries. I was a psychotherapist for 30 years (now am on disability) using horses when I got sick so I can't rule out lymne although I didn't have any reason to think that was the cause for having to give up my practice and go bankrupt due to developing this fatigue. Also, I have had low T3 for years, on Armour, but I wonder about the HPT (hypothalamus pituitary thyroid Axis, I think that's right).

I felt woozy right after my first HDA of 50,ooo with vit. B, magnerium etc. and have been stuck in bed often since starting HDA...although that's not new. I still caught a bad cold, had an awfully stressful xmas, and even with acupuncture, I'm not much better. The fatigue is still bad after 6 HDA, 4 weekly, 2 every other week. 10 years ago I also had a brain tumor and have to take opiates, uhg, which are awful. I was ok for 3 years after my brain surgery even on opiates. Then I went on Methadone thinking less opiates is better and was so sick I lost 30 pounds. I then had my gall bladder out and they damaged my stomach so I also have Gastroparesis and pretty high lead count. A lot of problems but they seem connected. I don't know about the rest of you but no quality of life is not worth this. Any help would be appreciated. My best wishes, D
 

IanH

Active Member
Dianna, Why did you start the HDA? What is your vitamin D level? Have you been tested for Lupus?
 

Dianna H

Member
11:02 PM
My Vit. D is fine and no Lupus. I didn't expect to feel so much worse from HDA when I know people who feel cured from it. After seeing this new Naturalpath who has had a very high rate of success with I.V. treatments of high dose Vitamin C, with other vitamins, mostly B's, and minerals. I also did acupuncture and saunas at the same time. Today we reviewed my case after he had consulted with his colleagues. One Naturalpath who also does HDA has found that those who have an extended bad reaction, like in bed for a week, found that they have Lyme and need to follow the high dose with a short low dose HDA to clear the debris. Another consensus was Thyroid is common but often an unusual kind... Low T3. Dr. Wilson's very specific treatment is highly regarded. Mine is auto immune which is also an issue to research. Immune issues can create a whole palette of challenges.
 

IanH

Active Member
To be more specific about my question.
For what symptoms or disease was the HD-ascorbate prescribed?
Personally I can never trust a clinician (whatever their discipline) who says they have a high success rate. I only trust independent research.
 

Dianna H

Member
I have been assuming CF/ME. I've been going to a pain support group and it's confusing to figure out. My friend seems to have CF but she has Lyme and responded very well to the vit. C drip but had to get this low dose, short drip to flush out the die off. She's had Lyme for a long time and has had many tests done that confirm it. But that's her and I do think everyone is very different. What I have come to see is that some of us with these very distinct symptoms, can still react so differently to supplements and treatments. I think most of us have found how interconnected our mind/body/behavior/ and spirits are. Taking that thought a step further, our physical problems can come from pre existing or new problems that have developed but whose symptoms are out of our awareness or are confusing the picture.. I had neurosurgery for a brain tumor but I felt worse when I had my gall bladder out 4 years later. I don't know why as I was happy and working at a business that took 10 years to develop. This thyroid problem I've had for 25 years is caused by stress so it makes sense that it would become an issue again at this point. It can develop any time, especially after surgery or child birth, from physical stress. The protocol for treating low T3 is tricky so for me, following Dr. Wilson's protocol has been important. Since it's an auto immune issue I am taking an even wider view of my symptoms.

My pain doctor said something I have found to be alarmingly true...our bodies prioritize our awareness of the worse symptoms. So I have chronic pain from the neurosurgery and haven't felt the pain of my very damaged back until recently when the acupuncture, cranial sacral, chiro treatments helped my neck pain. After reviewing my reaction to the vit. c I.V's I'm stopping for now. My doc took an hour with me after researching my reaction to the I.V's. No matter what my blood test says it's clear my thyroid has become problematic. I eat well maybe 1200 calories a day and I'm gaining weight weekly. It's also possible I have Lyme since the symptoms are so similar to CF and feeling bad after the I.V is a pattern his colleague sees after bad I.V responses...much as my friend did. My Naturalpath did say that his CF/ME clients feel better after 4 sessions with no die off issues so he did not recommend continuing the I.V's until we sort out my reaction with tests etc. My friend with Lyme never saw a tick or a bullseye, just bad fatigue for years. And she found that as a singer, the makeup she wore left a lot of heavy metals in her system. So she has been getting better by treating layers of problems. She now she lives a pretty normal life although she has flare-ups.

It's such a mystery and I do think we can only trust ourselves to know what's best for us. That's the support that's so difficult to get...people trusting us, feeling for our difficulties. I feel for every one of you.
 
I have just found this forum, I am experiencing intense herx reaction (I believe) , I experimented with MSM and Molybdenum for 2 weeks then had to stop because symptoms became so bad, included agoraphobia, panic attacks, trembling, vibrations, twitching and so on. It took about 5 weeks to calm down to manageable, I then did high dose MSM only, I lasted 3 weeks then intense symptoms again. I found a functional doctor after a few weeks and took multi supplements, these were low dose so took longer to increase symptoms, but it did increase but not as bad as previous, I found another functional doctor he practices the Bill Walsh orthomolecular treatment, he told me to stop the other supplements because I am an overmethylator and prescribed methylfolate 1000mcg x 2 and B12 1000mcg x 2 and zinc 50mg x 1. This lasted 6 weeks before the symptoms became too bad. I found lots of information about high dose vitamin c, I took 40g vitamin c for a week this had cleared a lot of the symptoms after a few days, I now know I should have stopped after that and switched to low dose, but because I continued it activated another herx reaction which brought intense agoraphobia with it, I then swithed to only 3g vitamin c a day. I am very slowly improving.
Youtube is a great source of information, go there for:
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Dr. Thomas E.Levy - Vitamin C

Youtube 58min: Herxheimer - like reaction, due to high dose needs to be followed up with low and slower dose to mop up toxins.

This can be due to an accelerated release of stored intracellular toxins at a rate in excess of what the ongoing VC being administered can neutralize, it can also be secondary to a massive kill-off of pathogens, with substantial amounts of reactive iron and other pro-oxidant “debris” in the lymphatics and blood. Similarly, it can be due to a massive kill-off of susceptible cancer cells, along with substantial amounts of reactive iron and pro-oxidant “debris” being released as well.
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I am sorry about the terrible URL formatting but my account doesn't yet permit me to add links.
Please replace the parts in the square brakets.
The one that is [remove me] means to just remove that whole part including the square brackets, the site doesn't like the extension "org" so doing this got around that
Missing dots, replace [dot] with an actual dot
Also backslash = [bs]

This link has lots of good links to lectures

[3 x w][dot]orthomolecular [dot] [remove me] org[bs]resources[bs]omns[bs]v13n20[dot]shtml

These links have lots of good info
[3 x w] [dot] orthomolecular [dot] [remove me] org [bs] resources [bs] omns [bs] v14n12 [dot] shtml
orthomolecular [dot] [remove me] org [bs] resources [bs] omns[bs]v09n27 [dot] shtml
 
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