This Is MS Multiple Sclerosis Community: Knowledge & Support

My husband has a progressive form of MS they say. His symtoms came on quickly and he his have extreme problems now, and they believe it to be primary progressive.

I read the information about chlamydia pneumoniae from David Wheldon. I found several other articles posted in the Library of Medicine publication reviewing the bacterial connection.

We had thought my husband may have Lyme but maybe it this bacteria. We are visiting my husband local doctor tomorrow after seeing another neurologist who wants him to switch to Rebif. She did prescribe doxcycline, but not thinking it may help much.

My question to those of you who have done the antibacterial trement is: Do you stay on your CRAB treatment? Sarah are you still using one of these drugs now? How long have you or did you stay on antibotics? How much have you improved?

My husband will be forced into medical disability next year if he cannot find any relief. He has tried all the MS drugs except Rebif. He did chemo-cytoxin (SP).

Thanks for your advise.

Patti

Dear Patti,

Sorry to hear about your husband difficult situation.

Sarah stopped taking the antibiotics after one year of continuous yherapy. Now she takes them for two weeks every 2-3 months.

I was never on CRABs. I took Lipitor for over two years and now I been taking the antibiotics along with the LDN.

Katman, who was diagnosed of PPMS, was on one of the interferones, but as far as I remember she stopped it two months ago. She has been taking ABX since December 2004.

There are some people doing both ABX and CRABs. You will find everything in the Regimens and Antibiotics sections here.

As you already know the doxycycline alone will not help your husband. He has to be on the Wheldon's or Vanderbilt protocol.

You find all the informations about the treatment on http://www.CPn Help.org/

Your husband has to make his own decision about CRABs.

Best wishes
Barbara.

Dear Patti,

Sorry, I must have been walking around with my head in the clouds because I have only just noticed this. Barbara has already answered most of your questions, but I will add a little more.

As far as disability goes, I have improved, I would estimate, from about 7 on the scale to about 2, in the two plus years since I started. I am not perfect yet, but am still improving, if slightly slower than at first.

As Barbara said, there are many people taking both a CRAB and the antibiotics, following either the Vanderbilt protocol or my husbands, which are very similar. I have never used a CRAB because in the UK that aren't prescribed for progressive disease, but they can be used in conjunction, should you wish. Also statins, which several people use, and LDN. I haven't taken any of these. However, I must reiterate that doxycycline alone will be of no help and needs to be taken for at least a year in conjunction with zithromax or something similar, with pulses of either flagyl or tinidazole. You had better print out one of the protocols to show your doctor.

At the end of the day it doesn't really matter if your husbands illness is caused by Lyme or CPn, because the treatment is the same. Also both pathogens are good at playing hide and seek: I was tested for both and showed negative for Lyme and nearly negative for CPn. Many doctors would not have treated me.

Take care,

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.

Dear Patti

My head has also been in the clouds. I know I can say for all of us that we are thrilled that you found us fairly early and can get started on this regimen. Seeing my own response I now am convinced that the sooner one begins the most recovery one will see. Like Sarah, who along with her generous husband, has been my saving light, I was far down the road of disability and deteriorating at an ever accelerating rate. And read the poignant story of LifeontheIce, also an MD. We have all come back from the brink of the abyss. I could not walk without my cane, which I have given away and I have not used my Handicapped tag for a few months nor have I used an electric cart. Most of all, my energy level is almost normal after reaching almost none.

Unless you have a very open-minded and courageous doctor you may have to be firm and courageous yourself in getting these drugs. Mine, after seeing my progess, is now totally behind me. Yesterday, when I wanted to add azithromycin to my list of Rifampin, Doxycycline, and Metronidazoly (Flagyl), he was eager to comply. If you have any questions to which you do not find answers, ask. There are no "dumb questions"

Rica

_________________
2010 5 years 4 months Now on Amoxicillin, Doxy, Rifampin, Azith, and caffeine in addition to  flagyl. 90% normal good days-50% normal bad days. That is a good thing.

Sarah,
Thanks for sharing you information. My husband had leg drop when he first paid attention to something going wrong in 2002. I read on the CPn site that a man from Canada had something happen to one leg too. All of your diseases seem to become aggressive after it appears in the leg. I wonder if that means something.

I emailed your husband this morning because I was curious if you had to have a respiratory illness to have this bacteria. My husband does not recall any. He has always denied any illness until this one.

Once the Lyme tests return we will begin the abx.

Thanks for the hope, we felt nearly defeated until a radiologist wrote that his disease could be MS or Lyme after over 6 MRIs in the past 2 1/2 years. Our new neurologist did not consider the latter, but our local GP is willing to explore this.

I had one leg loose almost all its ability, for a short time WAY back around 7+ years ago. It returned, and luckily I havnt progressed to anything too progressive. But thats a sample size of 1.

Hello Patti, I must have had MS since leaving college and I don't recall any respiratory illness back then, but I definitely had an infection before it turned progressive. Before then I would always have claimed never to have been ill. No matter that I had two occasions of losing power in my right hand: that was put down to sitting in awkward positions whilst painting and carrying much too heavy weights on my right shoulder.

As far as the leg thing goes, I would say that my last proper relapse hit my leg, I improved slightly, then just gradually and eventually much quicker downhill. I think, though, it just depends on where it hits your CNS at any given time. For instance, all nerves start in the head, but many people's walking difficulties are because of lesions further down. I had no lesions beyond the neck but I eventually lost complete use of my right arm and nearly that leg solely due to damage in the head.

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.