This Is MS Multiple Sclerosis Knowledge & Support Community

Hi Sarah,

I think the message is: Don't take too high doses of vitamin D without testing your D-metabolites and calcium levels, because the possibility of serious irreversible damage to your body exists. At the same time it will show whether you have a deficiency and need supplements.

What do you think of the immunosuppressive properties of 1,25-dihydroxyvitamin D3? And can a Chlamydia Pneumonia infection cause elevated levels?

Best wishes,

Hello HappyDaddy,

Yes, certainly, but presuming that U/d (units per day (?)) is the same as the internationally accepted IU (international units), then David's and other's recommendation of 4000iu of vitamin D for people with MS falls a long way short of 50 000 U/d.

This might also be useful:
http://ods.od.nih.gov/factsheets/vitamind.asp

By all means anyone should have themselves tested, especially if they experience any of the following symptoms: loss of appetite and nausea, weakness and nervousness that can't be explained by other reasons, vomiting, followed by excessive thirst and high blood pressure.

What do you think of the immunosuppressive properties of 1,25-dihydroxyvitamin D3? And can a Chlamydia Pneumoniae infection cause elevated levels?

As for the immunosuppressive properties vitamin D, yes, it undoubtedly does and this must be beneficial in treating CPn infection, because you don't want the immune system to go into overdrive when clearing things out with metro/flagyl. You want things to happen gradually, unlike what often happens with meningococcal septicaemia, where there can be such an overload of toxins as the septicaemia is tackled, where the patient can be dead within a couple of hours as they just can't cope with it. Doxycycline and minocycline are similarly immunomodulatory.

I should doubt if a CPn infection would cause elevated levels of 1,25-dihydroxyvitamin D3, because it wouldn't be suggested as a supplement for MS and other CPn infections.

Sarah

Hi Sarah,

What is the rationale behind Vitamin D supplements for CPn infections?

Best wishes

HappyDaddy wrote:Hi Sarah,

What is the rationale behind Vitamin D supplements for CPn infections?

Best wishes

To my knowledge, It's not recommended in CPn infection, per se, but is recommended for those with MS.

See http://www.direct-ms.org/vitamind.html and http://www.direct-ms.org/seasonal.html

There are also some good papers available on the web if you go looking.

Hello HappyDaddy,

Merely that if you are treating MS as a CPn infection, most people with MS show low levels of Vit D, which is well known, therefore take larger quantities of it. 4000iu is recommended. If you are treating another type of CPn infection, take less. It doesn't really have anything to do with actually fighting the organism, except thet the healthier you are, the more likely you are to be able to fight it successfully.

Sarah

edit at 14.08: Afternoon, Daunted, you just beat me to it there!

Hi Daunted, Sarah,

Daunted. Thank you for the links on vitamin D (I wonder why it's called a vitamin when it is really a pre-hormone). They were very interesting and convinced me even more of the importance of this hormone and its profound suppressive effects on our immune system.

Now, here is my dilemma. We all agree that part of MS is an attack of our proper immune system on our nervous system (myelin in particular). Anyway this is the end phase of the disease. But what causes this attack. We are not sure but CPn might be the culprit. How can these bacteria grow so strong in our body? I my opinion, because for a while our immune system was weakened by possibly different causes. So a possible theory would be the following:

Different causes --> Weakened immune system --> CPn infection --> Auto-immune MS attack

Once the CPn infection is established, the MS attacks will get worse when your immune system gets stronger again.

Now what do you do? Current medicine focuses on the last step and suppresses the immune system to avoid serious adverse attacks. As such severe MS damage is avoided but you will never cure the MS. You are also vulnerable because your immune system is suppressed. Increased vitamin D intake would fit in this approach because it suppresses the immune system.

In my opinion, you first have to fight the direct cause of the attacks, in our theory that would be the CPn infection without stimulating the immune system too much because this might cause severe MS attacks. That’s why we are taking the antibiotics. Now the tricky part is that once the CPn infection is controlled, you will have to stimulate the immune system to avoid that you get back where you were so take away the causes which weakened your immune system in the first place, assuming they are still there. Reducing the immunosuppressive vitamin D (if you have already high levels) would then be advisable. In my case that might be a nickel intoxication and food intolerances. Sarah, in your case, since you had reached a progressive phase with more severe MS attacks, your immune system might have recovered and the underlying causes might no longer be there.

The risk is that if CPn is not the culprit or maybe just a trigger that is not needed to sustain the MS attacks, stimulating your immune system might leave you in a worse state than you were before. Talking about a dilemma!

Best wishes,

Good afternoon HappyDaddy,

Sorry for taking so long to reply. By fighting the CPn infection with doxycycline or minocycline, and in my case, roxythromycin as well, you are already modulating the immune system. This is why it is important to carry on with the same regime when adding the bactericidal metronidizole/flagyl. The vitamin D (or whatever it is(!)) is merely a bonus with regards the modulating effects. I would hazard a guess that by the time you get to my stage in the regime of just taking intermittent top up doses, the modulation from the vitamin D is as nothing to the modulation you would have been getting from the antibiotic therapy. Now, if someone like you has very high levels of vitamin D, you should really consider cutting down the intake, but if like me, you don't, you should carry on, because your immune system will strengthen by getting rid of the pathogen and you want to be able to fight off any future attack. One thing Vitamin D does is close up the holes in the BBB, so if you do get another attack, the thing can't find a way through to the brain again.

I'm thinking as I type here, so bear with me! Yes I had reached a more progressive phase of the disease, but that doesn't mean that the attacks were more severe, just that there were no remissions. Some people with progressive disease can go for months or even longer without noticing any significant worsening, its just that they have no remissions and the brain gets more and more scarred.

All I can say for certain is that when I started on the antibiotics, I started to get better and the lesions in my brain started shrinking or even vanishing completely. In progressive disease they just stay there and gradually get worse, new ones appearing, unlike in RRMS when they wax and wane.

By the way, where do you think your nickel intoxification came from? Being an artist, I am in close contact to a lot of things probably better avoided, cadmium pigments, for example. And nickel as well: one of my favourite yellows contains nickel. Not lead though, since I much prefer titanium white to the rather mucky flake white. Although I don't grind my own pigments and endeavour not to put the brush the wrong way in my mouth when lost in thought, I do end up with big smudges on my face from time to time!

As far as I know, nobody has ended up in a worse state from taking antibiotics. Raven did have a relapse, but he was still in the tricky early stages of treatment and succumbed to influenza. Understanding the problems, he is continuing the treatment, because of the benefits he had already gained. I was lucky and didn't get anything when I was at a similar stage. But you are right when you say "Talk about a dilemma!"

Sarah

Hi Sarah

May I ask if you follow any special diet recomended for MS? eg avoidance of milk wheat, low fat, etc?

Thanks
Tom

In short, Tom, no! I guess I have a little less dairy at the moment because you shouldn't take it too near to the doxycycline, but I always take those together first thing in the morning. Live yoghourt, later on in the day, is a good souce of probiotics.

I always have had quite a good diet: not too much saturated fat and so on, but I reckon you can eat butter if you have plenty of olive oil and sunflower oil to balance it out. I rarely eat processed food, but I never have. I drink a couple of glasses of good wine in the evening, eat plenty of protein. That's about it. I have the blood pressure of a 14 year old and I weigh about 126 pounds at 5ft 8ins, but I did before, although I stand more erect than a couple of years ago.

Sarah

Hi Sarah,

I don't know yet where the poisoning is coming from. Still some research to be done there. However I do think it might play an important role in my MS. Take a look at my posting in general discussion http://www.thisisms.com/modules.php?nam ... opic&t=865

You could get some tests done regarding heavy metals or get your uric acid level tested. I'm planning to get that done and depending on that start with some inosine supplements.

Best wishes,

Hello Sarah,

I for one have always lived in the southern hemisphere (lots of sunshine) but still have had MS for 45 years. RR from 15 to 45 and now SP. My levels of Vit D were life threatenly low (to quote the dr) though I improved them with daily exposure to sun & take supplement D3.

My mother was from UK but moved to southern hemisphere in her 20's & also had similar pattern of MS. I have a neighbour who has MS & he has 4 daughters - 1 has dibetes 1, 1 has chronic fatigue, 1 has MS. Which all makes me think that genetics outweigh all else. Though I was very interested by your post and the Marshall report findings. Does this explain why there are such poor levels of Vit D throughout first world and it is linked to many disease epidemics eg cancer etc??

Hello again Popsie, as far as genetics go, there is a genetic propensity in some people to develop MS, but nobody else in my family has it, so it isn't an actual genetic disease. It is multifactorial, though and the nearer to the equator someone lives, if they have the genetic tendency, they are less likely to develop the disease. However, if someone lives actually on the equator but spends most of the time indoors or swaddled in dark robes, it doesn't matter where they live.

Take a look at CPn Help and look up all the posts by Red on D3: you will learn a lot.

Sarah

The genetic factor may be a simple one; one of our members has learned she has a mutated gene which does not allow her to process D properly. So, theoretically, even if one WERE out in the sun, it would not be enough, in some people's bodies, to stave off the cpn bacteria.

Since cpn is implicated in diabetes, MS, chronic fatigue, I would say your friend's family isn't so much 'genetically inclined' but, rather, heavily cpn-infected.

the new studies from the marshall protocol-team could be of some interest

Recent Publications
Proal AD, Albert PJ, Marshall TG: Autoimmune disease in the era of the Metagenome. Autoimmunity Reviews, "in press"
Preprint available from http://AutoimmunityResearch.org/transcr ... genome.pdf

Albert PJ, Proal AD, Marshall TG: Vitamin D: the alternative hypothesis. Autoimmunity Reviews, "in press"
Preprint available from http://AutoimmunityResearch.org/transcr ... t-VitD.pdf

Proal AD, Albert PJ, Marshall TG: Dysregulation of the Vitamin D Nuclear Receptor may contribute to the higher prevalence of some autoimmune diseases in women. Annals of the New York Academy of Sciences, "in press."
Preprint available from http://AutoimmunityResearch.org/transcr ... eprint.pdf