I am SOOOO exceited to find all of you!!!!!

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

I am SOOOO exceited to find all of you!!!!!

Postby minimouse » Sun Jan 29, 2006 10:12 am

My mom has a diagnosis of MS for about 5 or 6 years now. She has been sick for at least 30 years with what was FM. My whole family is sick. I have been sick for 25 years with FM and recently diagnosed with chronic late stage Lyme. My daughter has also been diagnosed with a very clear Lyme that was likely passed from me to her. My son is also sick but not yet diagnosed. My dad had Lupus so they thought, and passed away 2 years ago.

I have been working with a doctor for about 11 years and we have been dealing with my own health by treating possible infections. I am PCR positive for Mycoplasma Fermentans, but everyone else is negative. I am also negative for Claymedia Pnuemonia.

Recently I took my mom to see my Lyme specialist as most of you know MS seems to be sometimes linked to Lyme. Her test was negative though but that doesn't really mean much, and if it isn't Lyme it IS something else along the line of chronic infection. My mom has lesions in her brain and spine and has pretty seriouos numbness in her feet as I got to see first hand at the doctors.

She is on Avonex, but still seems really sick, but definetly better then before. She is going to be imbarking on ABX in about a month and I have been wondering what she should do with the Avonex. I am glad to seem your comments here and that most have stayed on it while treating with ABX.

It is also nice to see that whatever your poison is, the ABX recommended seem pretty close to the same in the various areas of autoimmunity. My mom will be starting with Augmentin since she has herxed from it in the past and then felt better, even though she didn't realize what was happening. I see that many here take Flagyl, do you also use Rifampin? I have been on Minocycline for about 3 years and have gained to a point of about 95% remission most of the time.

I will be emailing this website to my mom. I think she will benefit talking to others who are more in her shoes, even though we share about 95% of our sypmtoms, I have not a diagnosis of MS and so I don't take Avonex. I am also interested in supplemetns. She has a long list of to do's from doc and I would like to see if he recommends the same stuff for Lyme as is recommended for MS.

Finding this site, makes me feel more confident in my belief that AI Disorders are likely ALL just symptoms of a chronic infection of some sort. I will be looking forward to talking to all of you.
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Welcome to both you and you Mum

Postby SarahLonglands » Sun Jan 29, 2006 1:16 pm

Hello Minimouse and welcome,

As well as this site, I think you and your mother would really benefit by looking at http://www.CPn Help.org, where not only do a lot of people who post both on the antibiotics and regimens sections here post, but also there is much information by various physicians, especially from Charles Stratton at Vanderbilt, who has done most of the research about chlamydia pneumoniae, but others also, including my husband, David Wheldon, who has treated me, and Mike Powell from Sacramento. The home page gives a brief introduction then there are the treatment pages and the physician's pages for starters.

If your mother is to start abx to treat her MS, she really needs to use something which crosses the blood brain barrier, so in CPn Help you will find info about which abx are the most effective. Also on this site, http://www.davidwheldon.co.uk/ms-treatment.html. Everything here is effective both against CPn and lyme: it was devised to be so. Flagyl comes later in the treatment, at the bactericidal phase. I started it after about three months and took it in pulses of five days at a time, whilst still taking the other abx.

I was diagnosed with aggressive secondary progressive MS two and a half years ago. I am married to someone who was sure that there was an infective cause to MS. He prescribed doxycycline and roxithromycin, which would have to be swapped for azithromycin in the US. Then flagyl after three months. I took all this full-time for a year then swapped to intermittent therapy because I was doing so well. Now I take two weeks every two months or so. My disability rating has gone down from about seven to less than two. In addition I have regained all my mental faculties. I tested diagnostically negative for CPn and totally negative for lyme. Both are very difficult pathogens to unearth, so treatment is often best made empirically.

So take your time and read both sites, then ask some more questions on either place. Do take note of the various supplements recommended as well. This is a very important part of the treatment. You will benefit enormously by taking it all on board.

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 minimouse » Sun Jan 29, 2006 3:51 pm

So nice to meet you Sarah :D I just read your story this morning, the one from the magazine. Very interesting. Most of us have had such long journeys, but it is nice to be on the cutting edge and feeling so much better.

I am very interested in the blood brain barrier issue. Even though I am usually in a high state of remission, my brain is the part that is lagging behind. I did make a bit of progress after treating yeast with Diflucan, but I know I still could be much better there. My whole head seems to be a little behind, ringing in ears and dry eyes. Also my heart needs some help, still pretty irritable. I have had episodes of VTach, but other then those things, I don't really feel to sick any more. I can run circles around the rest of my family and my kids are in their twenties.

I will look over that website more. I have only had a moment to glance at it so far. I have wondered about CPn especially in regards to my mom. She has a lot of respiratory infections, crackling in her lungs from time to time and she has always had asthma.

I need to get her on board with the supplements and how she eats, which includes a lot of hidden sugars. Since she was recently widowed, instead of cooking like she used to she snacks a lot more, not much sense I guess in cooking for one. She is making progress though in accepting this whole idea of chronic infection. There is a lot to learn and when you don't feel that good, new info, is a little more difficult to digest. I really hope she will come here and meet all of you.

Thanks for the intro and I will be looking for you when I have questions.
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