copaxone with abx and other questions

A forum for the discussion of antibiotics as a potential therapy for MS

copaxone with abx and other questions

Postby butterfly » Mon Sep 04, 2006 7:13 am

I think this has already been addressed, but just to clarify: is there any reason the abx protocol can't be intiated while also on copaxone? Are there any contraindications or other reasons why this would not be advisable?

A little background: I was dx in Dec. '03 at age 34 (but had symptoms at least 7 years prior). Tried avonex and it was a disaster. Did copaxone for 5 months and then went off to try and get pregnant. Been off of it for two years (there miscarriages, no live births....but as a side note I do have two beautiful older children). Saw my neuro last week b/c after a month of daily headaches wanted to rule out optic neuritis (was having pain with eye movement, more on this later). She ordered MRI which showed no optic neuritis but did show one new brain lesion one old one enhancing. So, she is anxious to get me back on copaxone. Previous to the pregnancy tries I had been giving serious thought to abx. But, truthfully, the MRI has me a little freaked out and I guess I'm willing to try and cover multiple bases.

On a related note. After the MRI the neuro immediately started me on high-dose steroids, even though I am having bascially no symtoms. I would not have considired myself relapsing if not for MRI data. Is this considered a relapase? Is is typical to do steroids based on MRI alone? She kept saying, "you'll feel a lot better," but truthfully, I was feel pretty darn good. And when she saw me for an exam a couple days befoe the MRI, her exam was also pretty good. Except for jumpy reflexes and an abnormal babinski, everything else looked good. Balance, muscle strength all basically good. I'm just wondering what others know about indications for steroids. I guess I consented because this was the first time MRI had shown active brain lesions (at dx and subsequent scan just showed stable old damage). Any thoughts on this use of steroids?

Back to the pain on eye movement. It has now improved, and I concluded it was due to sinus infection (for which I was on my second round of antibiodics....first amox and then omnicef). I know some of talked about relationship between chronic sinus infection and Cpn etc. Thought some might find that interesting.

One more question/looking for possible input: I also have a positive ANA which makes me more suspicious of autoimmune disease being the key to my MS (although I lean to the camp that it does not explain all). Any thoughts on possibel relationship to this and Cpn? Or does anyone have data/experience that would relate this more to a different autoimmue thing? Anyone know of a connection between positive ANA and MS?

In closing (if anyone has made it though this verbose missive), please forgive me for jumping around, remembering that I am on day three of massive steroids. Anyone in my family will testify that makes me more than a little loopy. :D (although my sister-in-law thinks it makes me kind of fun).

Thanks to all for any input, insight you may be able to offer.

Sincerely,

Christy
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Postby wiggy » Tue Sep 05, 2006 10:38 am

Hi,
You can start on abx and be on Copaxone - other people stay with abcr's while they try abx, no problems.

I can not answer other questions but someone else will chime in soon.

I started on all supplements a month prior to starting abx as Dr. Wheldon recommends building up a supplement base.

I have stayed clear from steroids as I understand they can temporarily make you feel better but do not alter disease course.

You may want to visit CPn Help dot org to talk to find others on abx and copaxone.
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Postby SarahLonglands » Wed Sep 06, 2006 2:13 am

Hello Christy,

As Wiggy says, there is no proscription on taking antibiotics along with CRABs and many people do, often to keep their neurologist happy. The only thing to be wary of is to make sure you get regular liver function tests especially if your particular CRAB can cause problems with the liver. I don't know if copaxone does because being in the UK I have never been thought suitable for them.

Why were you given an ANA (anti-nuclear antibody) test? If you were positive whilst it doesn't obviously mean you have a CPn infection, it does make it somewhat more likely because lupus, one of the "auto-immune" diseases where it is commonly given, is one of those many diseases in which CPn is implicated.

You obviously have done enough reading to know about the relationship of CPn to sinus infections, but going onto steroids, they are often very helpful in the short term, but in the longer term, if your MS is caused by CPn they can cause a proliferation of the infection. The best supplement to guard against this is n-acetyl cysteine, which everyone on the various abx protocols now takes, or should do, anyone reading this who doesn't.


Sarah
An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.
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Postby butterfly » Wed Sep 06, 2006 7:46 pm

Hello Sarah,


Thanks for your reply.

The ANA was to check out other possible auto-immune problems. I mentioned to my neuro that I had a lot of morning stiffness and fatigue and generally felt much better later in the day (not typical for MS). Also, my Dad has recently been dx with Sjogren's. She thought it worth pursuing bloodwork. All Sjogren's tests came back negative, but the ANA was positive. A subsequent lupus test (double-stranded DNA, I think) was negative. She said, if you continue to have stiffness you might want to see a rheumatologist.

Last week (about 6 months after original test) I had the ANA rechecked (at my request). It continues to be positive now at a higher ratio. She is now advising I see a rheumatologist before beginning again on the Copaxone, in case the rheumy wants to take a different tact.

In the meantime, I honestly feel pretty good (until I did the steroids over the weekend). It is all so confusing! Another factor in all this is three miscarriages in the past 18 months (trying to get pregnant was why I went of the copaxone to begin with). Previous to the first miscarriage, I had two completely normal pregnancies. It seems to me that something is clearly not right with my immune system....but how to get to the bottom of it is so overwhelming!

In the meantime, I have an appointment with my nutritionist/herbalist tommorrow. I will definitely ask him about the n-acetyl cysteine, and also talk to him about the Cpn protocol and the recommended supplements. He also uses traditional chinese medicine, which throws another possible treatment option into the ring. But too much for my steroid-muddled mind to sort through right now!

Again, thanks for your response. And any additional insight anyone has about what I've described and how it might relate to MS and/or Cpn is much appreciated.

Sincerely,

Christy
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Postby butterfly » Wed Sep 06, 2006 7:46 pm

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Last edited by butterfly on Thu Sep 07, 2006 8:43 am, edited 1 time in total.
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Postby SarahLonglands » Thu Sep 07, 2006 12:49 am

Hi Christy,

I'll send you my experiences about miscarriage and so on by private mail, also some other useful info which you might care to show to your nutritionist. I'll try to do it at lunchtime. By the way, I once duplicated a message here seven or eight times because the site seemed not to be working properly and I wasn't on steroids or anything!

Sarah :)
An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.
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