This Is MS Multiple Sclerosis Knowledge & Support Community

Roy,

I see you live in SW Indiana? Are you coming all the way to Nashville, Tennessee to see Dr. Sriram in person to be treated? Or have you been taking some antibiotics for the possible treatment of CpN, as is being currently STUDIED by Dr. Sriram in his clinical research trials with regard to CpN?

It is unclear from your previous postings under "Regimens".

Just wondering............The two things are a bit different.

Thanks!!

Deb

Deb, he wasn't in an antibiotic trial but something else. He wanted to come off it and start antibiotics:

Hello folks

Back from Vandy and dropped out of the Rituxan drug trial today, offically. Had the LP done for the trial and pulled extra fluid and a blood sample to test for cpn to see if its positive or not. I will post when I find out.

Dr. Moses was down w/ food poisoning and we didn't have much time to speak and Dr. Sriram was doing double duty.

Roy

http://thisisms.com/modules.php?name=Fo ... 24&start=0

Sarah

Hello folks,

You are correct Deb, there is not a Vandy protocol that I know of. Dr. Sriram and Moses treat the patients as each case dictates. What they have myself on is nothing that I've never heard of.

Robin you are also correct in their findings on cpn.

Roy

Just to make sure I was covering all my bases I went to see a well-known chiropractor in my area who is trained in alt medicine, nutrition, etc. After reviewing all of my previous blood and CSF results she noted that my lyme test was borderline positive but was never re-tested or questioned... although I was diagnosed positively for MS. It is her theory that MS is always viral or bacterial and that the cause is not being addressed but rather the symptoms. Of course I'm always suspicious of alternative medicine, but after doing some reading it does appear that Lyme and MS having the same etiology and the symptoms are often indistinguishable.

I'm considering undergoing more extensive tests for lyme and am now considering the abx protocol. Of course once again I find myself very bothered that this kind of research has not yet been funded by the NMSS (to my knowledge). I would have thought that the effectiveness of abx on MS would have been proved or disproved by now.

Hi, Roy!

Oh......ok.......thanks for clearing that up. I know Moses pretty well, (as you probably do, also - mention my name to him - he'll tell ya. ), and I didn't think that sounded right.

Ok..........I better write back to Vandy right now again then and let them know you cleared this up.

Still................did Moses diagnose you with definite MS?

What is the antibiotic treatment for, especially if you tested negative for CpN?

Deb

Deb,

Yes, Harold DX me with MS 18 or so months ago with PPMS.

As you know testing negative doesn't mean that you don't have the bug.

Roy

True, Roy.

I just know how.........how does Harold put it........"careful" he is.

I did just now see that that was what he diagnosed you with - PPMS. Firstly, I am SO sorry!!

Well, Roy.........you never know. Heck, there isn't much else that is useful for PPMS (as you unfortunately are aware), so you might as well take anything you can that might help!!

I send all my best wishes to you, Roy! And to your wife.

Deb

For those of you interested in the possible Lyme-MS link, I posted this on the CPn Help.org site.

It is a summary of a Lyme conference attended by Steve Phillips the president of the ILADS (International Lyme and related diseases society).

It's a long read, but note his discussion of research connecting the diseases. He calls for large scale use of antibiotics in MS treatment!

Interesting for those of us interested in an infectious cause.
http://www.geocities.com/gallisto1/Rapo ... sta_7.html

Sojourner

Hello Deb and folks,

How true that is. Like I say, nothing ventured nothing gained.

Thank's for the well wishes.

Roy

Hi Roy

As you know, there are several of us who are saying "Heads up! We can reverse this horror". We may never be what we once were, but being better is certainly a matter of degree.

We will see you in Indianapolis in July. Looking forward to meeting you in person!

Rica

Hello folks,

Thanks Sarah for helping to clarify.

Likewise Rica I wouldn't miss it and yes any kind of reversal will be a step in the right direction, as you and Sarah can attest to.

Roy

Roy,

Sarah quoted you on this thread, to state that you (recently?) dropped out of the rituxin trial. Reports of the past few days suggest that rituxin might be a good thing for PPMS/SPMS. So, is there anything you can tell us about the trial?

Presumably you were not responding positively in the trial; so has the abx been better for you? I note that Sarah has consistently cautioned that the abx treatment may not be as effective for progressive ms.

Regards & thanks,
Phil.

Hello Phil,

I did originally say that because that was the evidence largely coming from Vanderbilt at that time. However more recently the facts seem to show otherwise. Katman, who has posted just above has PPMS and has made unbelievable bounds forward for one. Also Guner, diagnosed with PPMS at 25 and in a wheelchair for the last five years has stopped his progression. Nothing much more as yet, but all his lesions are in his spine. Never mind me with SPMS of a very aggressive nature.

Now, when Ram Sriram first wrote to David he was talking about the bacteristatic antibiotics and had not used metronidizole (flagyl). Now he does. Both Chuck Stratton and David do, also various other people using either of the two regimes.

It is my opinion that failure is often due to not taking the abx either correctly or for long enough. Katman, Guner and myself have been assiduous in this regard.

Sarah

Hi, all

It seems to be part of my job- beating a dead horse! I fully agree with Sarah- as close to 100% compliance as possible is mandatory If a drug says 2 hours after and an hour before eating that is what to do. The pill police will not come by. All of us at some point have met those who feel imposed upon to have to comply with a complicated schedule but I think, in truth, that we are the very fortunate ones. We know about this and have the sense to take advantage of it. I didn't know that those with PPMS weren't supposed to get better so I did. I am thrilled to have this opportunity.

Rica

Thank you Sarah & Rica for bringing me up to date on abx for PPMS.

However, the thrust of my question to Roy was to learn a little from his experience with the Rituxan trials. The recent reports sound very promising for PPMS.

Regards,
Phil.