This Is MS Multiple Sclerosis Knowledge & Support Community

Are those of you on ABX treatments for MS also taking vitamin D?
And, if so, what's been your experience in healing?
Carol

Hi Carol, My husband has been taking 4,000+ I.U. for one year. I didn't observe that it did anything to him or for him. He started the Wheldon CAP four months later in August '06. Of course, the CAP has done very much for him. Some folks on the CAP observe that adding or increasing vitamin D after they are already on the protocol enhances the bug-killing.

Hi Carol, like Mormile's husband, I was taking 4000 iu of Vitamin D before starting abx. I actually felt the abx starting to work the very day I started, whereas I had already been taking D3 for several months and just continued to deteriorate.

I don't honestly know if D3 aided my rather rapid pull back from progression. Charles Stratton, who started all this thinks maybe it did, but who knows?

Sarah

Are you still all taking vitamin D while on the ABX?

I'm trying to figure out if the vitamin D might to helping you not to herx from the ABX.
Carol

Carol, I have finished taking full-time abx and now just take two week every three months, as you can see from my signature. I still take 4000 iu a day of D, sometimes a bit less in summer and I took it throughout the antibiotics.

Herx is a much misused term, but I did "herx" in the correct sense in the first couple of weeks of starting. I had no more reactions to metronidazole after a year, so Dr. David Wheldon, who I am actually married to, deemed it was time to go on to just intermittent therapy. I am still slowly improving even whilst not taking abx.

Since people with MS show a deficiency of D it is wise to carry on taking it. I got the idea first from the Best Bet Diet people. David is a clinical microbiologist with special interest in virology to give you his correct hospital title and he discovered the work that was going on at Vanderbilt, so started me on antibiotics. If he hadn't, I was deteriorating so quickly over the previous three years, I would be dead by now, although not yet 50. I didn't think it would help, being at the time someone who thought everything was treatable by natural means and a good diet. I was completely dumfounded. There is more in the Regimens section about my treatment, because the Antibiotics section wasn't here when I first started.

Sarah

Hi again, My husband still takes 4000+ I.U. D3 every day and may continue it for the rest of his life for the reasons Sarah mentioned. I've never run across any information to suggest that vitamin D would counter bacterial die-off reactions. On the contrary, several users at CPn Help report that it increases die-off, and thus, increases the accompanying symptoms. If the die-off reactions you are experiencing are too strong to tolerate, perhaps you should back off on the dosage until your tolerance improves. Are you using extra vitamin C, activated charcoal, or chlorella to clear out the endotoxins? They really do help! There's no way the experience is going to be comfortable all the time, but there is room for adjustment if your body tells you that you are going too fast, and the helpers I mentioned make day-to-day life on the protocol much more manageable.

Sarah and Mormiles,
So, both have been taking lots of vitamin D through the whole time.

Sorry for all the questions, but has there been much improvement in symptoms?
Carol

Carol, yes I have. Read my signature to see what improvement there has been. That amount of improvement in EDSS for someone with SPMS who is supposed to only get worse says it all really.

Sarah

Carol,

My husband's improvements are:
fatigue-much better
cognitive function-fluctuates between moderately better to much better
restless legs/burning feet-almost completely gone
bladder issues-moderately better
balance-fluctuates between moderately better to much better
foot drag-moderately better w/brief episodes of normal walking

There's still plenty of room for improvement. The most telling thing is that Steve is still working full-time. If he had not started his treatments when he did last August, I'm certain he would have had to file for disability by now. He's 53 and would like to work past 70---now it looks like that will happen.

Sarah,
I hate to say it, but I don't know how to check your signature line. At first I thought you meant the area at the bottom of your post, but see nothing there.

Moremiles,
I'm not currently on any treatment. I'm nervous about starting anything because I have chronically elevated liver enzymes and am afraid the ABX might be too much for my weak liver. Doctors have no idea why the enzymes are elevated, short of doing a biopsy, which I don't want to do.

I'm worried about herx, because I've heard of people, (not on any particular treatment, but using ABX), having such severe reactions, they're bedbound. That would put me in a nursing home, since I live alone with no help.
Carol

Carol, that's odd: it is there on my monitor. Here it is, anyway, just for you:

"An Itinerary in Light and Shadow.
Started the Wheldon abx regime in August 2003, due to aggressive SPMS. Moved to intermittent therapy after one year. Oct 2006 still take this, now two weeks every three months. EDSS was about 7, now no more than 2."

If I might answer the remark to Mormiles about being made bedbound, I have only really heard it happening on the Marshall Protocol, which was invented for people with sarcoid, which Marshall had himself, but seems to be now used for many other diseases. It is not the best thing to use for MS because of the total avoidance of vitamin D. With this subclinical doses are given and it can also sometimes where people are so nervous about starting on a real protocol that they start themselves on subclinical doses. I started on full dose and just felt tired and had a slightly disturbed stomach for a few days. Other people build up more gradually, by starting on just 100 mg of doxycycline a day. Anything less than 50 mg a day is considered subclinical. My husband did an experiment several years ago with another pathogen to show just how quickly resistance to antibiotics can develop by giving too small dose of the antibiotic.

Sarah