Vitamin D poison to Lyme sufferers?

[Trudi]

There has been quite a bit of discussion regarding Vitamin D; instead of posting at each thread, I decided to start another one.

In the book, Top 10 Lyme Disease Treatments, I came across the following statements:

1. Lyme disease is caused by cell-wall-deficient bacteria

2. Vitamin D is not handled correctly in the bodies of infected cell-wall-deficient bacteria people

3. Dr. Schaller has found that 1,25-D is involved in other inflammatory processes

4. Vitamine D, a precurser to 1,25-D can be a poison to Lyme sufferers

5. People infected with cell-wall deficient bacteria will find that Vitamin D can and does become toxic

http://www.lymebook.com/marshall-protocol

These statements appear to apply to me. If I am in the sun, I pay for it in body-wide pain. I have discovered that the added Vitamin D in milk also causes body-wide pain. Dairy that is not fortified with Vitamin D doesn’t bother me.

Just some added food for thought!

Take care,
Trudi

Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?

[richie]

Hi -Not quite accurate –point one suggests Lyme is caused by cell wall deficient bacteria –not quite accurate –lyme has three distinct forms -cell wall being but one form –Each form calls for different treatment —And I dont spend much time looking into lyme –but I did spend much time looking into the Marshall Protocol of which I will with hold comment !!!
richie

[cavalier]

Well the debate over Vitamin D continues – it’s worth a trial perhaps both ways to see if you notice any differences & discuss your case with your doc who maybe torn as well on the subject some report improvements on each side of the fence.

Here’s one for Vitamin C & Lyme – which I find interesting as you know Vit C in many forms is widely used to fight Lyme both in IV form & other forms & there is the much famous Vit C & sea salt therapy which some hail to work or be helpful. What I find about this is – I have had a lot of resistance in fighting my own chronic Lyme with AP – when I read this I wondered if this has any truth to making my own Lyme be more resistant? I have done good amts of Vit C 3 to 5 up to 10 grams a day & some days as much as 30 grams. I was recently up to 100 grams of IV C. I stopped as I got run down from the driving but I have not regained my stamina still – I stopped the C as I had too for me to do the LDA therapy as the C interferes with the medicine chelates it out which could be the case for the AP too chelating it out?
I feel as if in my caser I am making more headway in herxing without the vit C although my sinuses do miss it as this is that time of year for me allergy wise but I am finding 1,000 mg’s to go a long way to do the job right there & stop it at that mark.
Anyways here’s the link not to hijack but it’s a similar debate & also relates to Lyme – I know this will get a mixed reaction but in my case I think there maybe some merit to this.
Vitamin C: a Lyme Patient’s Friend or Foe?
By Tom Grier
( ME – this article gets into actual cases of Lyme patients how they failed to respond to ABX you can read thru this it is compelling) I read other articles by him he is a person who had Lyme himself & he was very medically trained has a lot of degrees. But here are some of the thought processes which adds to the patient stories) We don’t have any animal or human data to compare, but we do know that vitamin C plays a small but significant role in the production of a neurotoxin called quinolinic acid. Even modest increases in quinolinic acid can cause brain neurons to repeatedly fire. If left unchecked, elevated quinolinic acid levels can lead to demyelination and cell death. This is the main cause of dementia in late stage AIDS patients. At least one study has suggested that quinolinic acid levels in neurological Lyme patients can be 40x higher than normal. Could these levels go higher if the patient takes mega doses of vitamin C?

In a large patient study that reviewed vitamin supplement use in AIDS patients, it was found that not only did zinc not help improve symptoms, but any amount of zinc actually correlated to a worsening of the disease and a shortening of life. Normally zinc is considered an immune boosting supplement, but zinc supplementation is now contraindicated in AIDS patients. Since we know from this experience that some supplements can exacerbate and worsen symptoms in certain diseases (with dire consequences), then we must use caution in considering treating diseases with mega doses of any supplement. from – Do you have a similar case history concerning an adverse outcome of Lyme disease that corresponds to a home remedy? If so, please send it to Tom Grier. You can use the contact address of LymeNet Europe and then it will be forwarded to him. – http://www.lymeneteurope.org/info/vitamin-c-a-lyme-patient-s-friend-or-foe

I think what is in a multi & in a orange is for now my limit. Yep I was sure & so were some doc’s that high dose Vit C would be helpful – is this why my disease markers went up or were they just a temporary rise before they are going to fall? None the less I know I have had trouble responding to AP & so as I have questioned heavy metals & parasites which are indeed there & make it harder to get thru the barriers I have also questioned everything I take & eat – as I felt I had too.

Best – Jill
Best – Jill

What may make sense for treating a cold may not make sense for an AIDS patient…or, perhaps, even a Lyme patient.

These are fairly broad speculations, but there is growing anecdotal evidence that vitamin C and perhaps some other mega nutritional therapies are either inhibiting the healing process, increasing symptoms or, even worse, exacerbating the infection. Until a well designed study chooses to look into the role vitamin C and other supplements play in this infection, we will never know the true role that mega nutritional supplements play.

In addition to the three cases I’ve described, in talking to dozens of other neurological Lyme patients who were taking vitamin C, it seemed – almost without exception – that the higher the dose of vitamin C, the more severe their symptoms were. This is anecdotal evidence only, but considering the tragic outcomes I have seen, I feel that the consumption of unusually high doses of vitamin C by neurological Lyme patients should be reconsidered

[Trudi]

@richie wrote:

I did spend much time looking into the Marshall Protocol of which I will with hold comment !!!

Thanks for putting a smile 🙂 on my face, Richie!

My LLMD offered to put me on the Marshall Protocol when I first saw him in 2008. Too scary for me at that time. The use of Benicar (for BP) back in 2005 brought the Lyme to the surface (Benicar is used in the Marshall Protocol). I have since discovered that Benicar stimulates the immune system so this makes total sense. Had my doctor known to couple this with antibiotics, I may be in a different situation. Unfortunately, no one knows all the answers, and treatment is often trial and error 😥 .

Take care,
Trudi

Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?

[Trudi]

@cavalier wrote:

Well the debate over Vitamin D continues – it’s worth a trial perhaps both ways to see if you notice any differences & discuss your case with your doc who maybe torn as well on the subject some report improvements on each side of the fence.

No trial and error needed for me–we know that I am toxic with Vitamin D, even though my bloodwork is on the low side. My doctor said I have too much in the tissue.

we do know that vitamin C plays a small but significant role in the production of a neurotoxin called quinolinic acid. Even modest increases in quinolinic acid can cause brain neurons to repeatedly fire. If left unchecked, elevated quinolinic acid levels can lead to demyelination and cell death. This is the main cause of dementia in late stage AIDS patients. At least one study has suggested that quinolinic acid levels in neurological Lyme patients can be 40x higher than normal. Could these levels go higher if the patient takes mega doses of vitamin C?

Interesting! When I was seeing the LLMD he wanted me on high-dose Vitamin C IV’s. I was reluctant so he put me on a high-dose oral Vitamin C. Almost immediately I started to bleed extensively from the rectum. Stopped the Vitamin C, the bleeding stopped. However, even orange juice at that time started the bleeding :(. I avoided all Vitamin C products for the longest time. I then had an Organic Acid Test done and it showed I was high in ascorbic acid and the comment was made that this patient is taking high doses of Vitamin C 😯 –that, of course, wasn’t the case. What you will be interested in, though, is that my quinolinic acid was quite elevated! This was all done in the summer of 2010. Probably within the last 6 months I have started drinking organge juice again and eating foods with Vitamin C. Thus far no problems. I hope this indicates that I am beginning to heal from within.

Good luck in your quest for health–
Trudi

Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?

[cavalier]

Trudi – just to clarify I was speaking in broader terms as to others for the Vit D situation. Interesting as to your Vit C findings maybe you echo the same as some other folks? I had a blood test to determine if I was genetically able to use Vit C. I was supposed too do a test (I had forgotten about it til now actually) to see how well I was able to use the Vit C, it’s been a couple of weeks since I stopped the high dose Vit C . I dunno if the blood work would show it still now or not, but I should call to find out . I feel as if something has changed though not quite able to put my finger on it just yet, it’s early but I feel as if I am detoxing more – it doesn’t make sense as high dose Vit C should make you detox according to what some docs say, but it maybe not the case for a chronic Lyme patient?

I found your information your information quite interesting! TX for sharing this!
best – Jill

[cavalier]

Which test determined Trudi the Vit D is high in your tissues? your findings seem to suggest the Vit D levels are not the complete picture – I think it would be good for me to check this for the tissues if I can.

Tx – Jill

[cavalier]

Trudi – You said my quinolinic acid was quite elevated!

Me- It can be elevated by Lyme to begin with if this article is correct so adding in vit C could only make you worse – which maybe what has happened to me.

Jill

[A Friend]

@Trudi wrote:

@cavalier wrote:

Well the debate over Vitamin D continues – it’s worth a trial perhaps both ways to see if you notice any differences & discuss your case with your doc who maybe torn as well on the subject some report improvements on each side of the fence.

No trial and error needed for me–we know that I am toxic with Vitamin D, even though my bloodwork is on the low side. My doctor said I have too much in the tissue.

we do know that vitamin C plays a small but significant role in the production of a neurotoxin called quinolinic acid. Even modest increases in quinolinic acid can cause brain neurons to repeatedly fire. If left unchecked, elevated quinolinic acid levels can lead to demyelination and cell death. This is the main cause of dementia in late stage AIDS patients. At least one study has suggested that quinolinic acid levels in neurological Lyme patients can be 40x higher than normal. Could these levels go higher if the patient takes mega doses of vitamin C?

Interesting! When I was seeing the LLMD he wanted me on high-dose Vitamin C IV’s. I was reluctant so he put me on a high-dose oral Vitamin C. Almost immediately I started to bleed extensively from the rectum. Stopped the Vitamin C, the bleeding stopped. However, even orange juice at that time started the bleeding :(. I avoided all Vitamin C products for the longest time. I then had an Organic Acid Test done and it showed I was high in ascorbic acid and the comment was made that this patient is taking high doses of Vitamin C 😯 –that, of course, wasn’t the case. What you will be interested in, though, is that my quinolinic acid was quite elevated! This was all done in the summer of 2010. Probably within the last 6 months I have started drinking organge juice again and eating foods with Vitamin C. Thus far no problems. I hope this indicates that I am beginning to heal from within.

Good luck in your quest for health–
Trudi

Trudi,
Thanks for posting your experience and findings into a topic of its own. This makes it easier to follow your particular case. I did a search tonight on quinolinic acid, and have gotten quite an education. Got lucky when a search I did found several good links… and one of them awesome with what it can further teach many.

These are my notes, and links found, along with a few comments. An excerpt from the beginning lines of the neurologist’s paper is included with that link. (By the way, keep learning about our Vitamin D problems… because I will be learning things I need to know from you. 😮 )

A search for: quinolinic acid neurotoxicity was done.
The search found many links on this topic. Some mentioned such as melatonin, etc. which have a positive effect on quinolinic acid neurotoxicity. Suggest if one is interested in this subject, that once the above search is done, to glance at what is showing in the description of each found link.

This Wiki link was found and gives a good overview of the subject:
http://en.wikipedia.org/wiki/Quinolinic_acid#Toxicity
Thanks for introducing me to this subject, and furthering my education.

Other links found in the search mentioned the presence of this neurotoxicity in various conditions, and definitely furthers my understanding of the subject. Especially a link to an important article by Dr. Russell Blaylock, outstanding Neurologist, is considered a prize find

[richie]

Hi AF –I really havent said hello in awhile –hope things are good –things good here –still cranky !!!!!! But I have altered my thinking on some supplements !!!!Best always –
richie

[Trudi]

@cavalier wrote:

Which test determined Trudi the Vit D is high in your tissues?

Hi Jill–
I addressed this in one of my posts–here it is–

Although my blood levels are low in Vitamin D, according to my Organic Acid Test, my phosphoric acid level is high. This is “associated with hyperparathyroidism, vitamin d-resistant rickets, immobilization following paraplegia or fracture due to bone resorption, vitamin D intoxication, blood lead levels above 1.5 ppm, renal tubular damage, familial hypophosphatemia, and metabolic acidosis.” My doctor feels that because the blood levels are low, the excess Vitamin D is in my tissues and I am Vitamin D intoxicated.
https://www.roadback.org/forum/viewtopic.php?f=1&t=9466&p=69586&hilit=organic+acid+test#p69586

Take care,
Trudi

Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?

[Trudi]

@cavalier wrote:

adding in vit C could only make you worse.

Hi Jill–
That may be so. I did wonder, after reading your post on this, if my then inability to metabolize ascorbic acid and therefore, having a high level, may have increased the quinolinic acid.

The Great Plains Laboratory, Inc, who offers this test, say that quinolinic acid may be high for various reasons: chronic inflammation from microbial infections, excessive immune stimulation, adrenal over-production of cortisol, central nervous system degeneration, excessive tryptophan supplementation or even exposure to phthalates.

Apparently, quinolinic acid is also “a metal chelator”, so it is not all bad :).
http://www.greatplainslaboratory.com/home/eng/brochures/Toxic%20Chemicals%20Brochure.pdf

Take care,
Trudi

Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?

[Trudi]

One of the great enigmas has been the connection between vaccinations and certain brain disorders such as:

Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?

[A Friend]

@richie wrote:

Hi AF –I really havent said hello in awhile –hope things are good –things good here –still cranky !!!!!! But I have altered my thinking on some supplements !!!!Best always –
richie

Richie, thanks so much for your “hello.” We do go back a ways, don’t we?

Altering our thinking can be a good thing or a not so good thing… but sometimes we don’t know which, until later.

You seem to be like the “Energizer” bunny, an encourager and our poster boy for AP and SD. Hope you are continuing to do well.

AF

[Lynne G.SD]

This news is hot off the press,or should I say it has not been in the paper yet but should be on the 23:00 news tonight.
The university of Edmonton in Alberta just released this info on antioxidants.It shows that large doses actually confound the immune system which in turn can cause terrible problems….as if we did not know this already.They do inhibit free radical damage but these free radicals are needed as they do a lot of signaling between cells.
When I see something in writing I will post it.So far nothing is showing on Google yet.

[Author]

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