Hi

I've only recently uncovered the info available on CPN and MSi, and the CAP  treatment, following reading a news article in MSRC

http://www.msrc.co.uk/index.cfm?fuseaction=show&pageid=741

cpnhelp.org and David Wheldoni's websiteshave provided a wealth of details that have really resonated with me as I've suffered with throat infectionsi my whole life and my last relaspe was preceded by a throat infection that completely sapped my energy, then I was hit by a cold and the relaspe.  When I read about CPN and CAP I knew it was for me.  However, there's a problem; during my last relaspe I finally gave into having Tysabri, I had my first infusion 3 weeks ago.

I have a dear friend with a son-in-law with Chrohn's disease. 
I will suggest this site but it'd be nice to hear about experiences from those with Crohn before I do so.  She knows I'm on CAPi for my MSi and she knows I'm having a tough time without any improvement YET.  Thanks 

http://www.physorg.com/news144922262.html

 

 

I read in the handbook about spinocerebellar ataxia and possible relation to CPNi.  I only found one mention in one article from a couple of years ago on my search of the site.  Anyone with spinocerebellar ataxia or know anything about it?  My dad(step-but really my dad) was diagnosed with spinocerebellar ataxia Type 6.  He is completely diabled-in a scooter or w/c, able to transfer short distances, has garbled speech, is homebound, has had bypass surgery, can't provide for he and my mom and fights depression(who wouldn't)?  As I have looked at cpn for me, I am beginning to wonder-am just about convinced- that he has it also and may be able to regain some function with treatment.

This is a long post but I just heard of a leukemia drug that may help with MSi.  I didn't read all of it and some of you may have already heard about it but, just in case.  Hope it helps.  I do have a cousin that has has MS since she was 16.  I know it's very hard to live that way but she managed to have 2 children and now has grandchildren but has trouble still.

THURSDAY, Oct. 23 (HealthDay News) -- Two medications may prove to be advances in the treatment of multiple sclerosis, researchers say.

In one study, an experimental drug called oral fumarate (BG00012) substantially reduced symptoms in patients with relapsing-remitting multiple sclerosis, according to a phase II clinical trial by European and North American researchers.

Please read this article . It disgusts me what these doctors are doing these days. and they think its ethical. http://www.huffingtonpost.com/2008/10/24/half-of-american-doctors_n_137417.html

I've had RAi for 33 years. Able to keep relatively under control until recently. My disease has always been about inflamation. I don't test positive for the RA factor. Don't want to use Enbrel or those other drugs if can avoid. Tested positive for cpni via Quest labs. On CAPi for 2 weeks. Swelling of joints is worse. Some strange numbness in hand and as the day goes on can't move 1 arm. No flu like symptoms. Does this sound normal? What else can expect?

My mobility is becoming worse and I am also having neuropathy-type foot drag -- occasionally the  toes on my right foot fold over and I don't feel them right away until I've scraped them on the floor or stairs! And my feet, (even though I  think they are "up") aren't and I trip... I am unsteady.  My husband is constantly having to steady me and help me maneuver on the occasions we leave the house or he pushes me in a transport chair.

These are NEW symptoms which have developed over the last two pulses.   I have had problems with my right knee since the beginning of capi but these symptoms are different. My left knee and leg are now affected.

Got my CPni test results. Nothing I didn't already know. CPn IgGi 1.67 IV CPn IgM 3.43 IV Good to see that I really am fighting something. Linda

Can someone please tell me which life cycle of CPN  Bactrim affects? I know it's somewhere here on the site, as I believe I used to have a chart bookmarked that listed what specific ABX affected the different lifecyles of CPN.

 I'm battling with either BV or bladder infection (didn't start until I pulsed) and have enough Bactrim DS to treat; BUT, since I just finished a pulse (that hit me pretty hard) I don't want to do another one, LOL, if it affects the cryptic formi of CPN....  It's becoming increasingly uncomfortable and I should probably go to the doctor; but I really am thinking my pulse is what triggered it.

Here is link to article on pathogens as potentiallyy causitive of MSi.

Hi,

I am wondering if there is a connection between Huntington's Disease and CPNi or other gram negative bacteria infectionsi.

 A friend of the family has this desease and it has progressed to the point that she has just checked herself into a nursing home, she has 2 children and is only 36.

Has anyone currently on abxi ever been diagnosed with glaucoma? I'm asking because a dear friend has just been diagnosed with an early stage of it and has been told simply to limit his caffeine intake, drink small amounts of water throughout the day to stay uniformly hydrated and to lose some weight to bring down his blood pressure. No meds at this stage.

I'm thinking, since I can't find anything beyond 'glaucoma is usually caused by pressure behind the eye' (yes, I'm greatly simplifying) that this is yet another mystery disease.  He's never had an eye injury or trauma to attribute this damage to, so I'm questioning whether I should really push him to investigate cpni.

Hi all!

Have been reading here that some cpni patients have a skintone that looks yellow. Since I got sick with cpn 2 years ago my skin also looks more yellow. Why is that? My livertest is normal and bilrubine is not elevated.

And this also started before I started to drink a lot of carrotjuice.

But I strongly belive I have cpn in my liver and and I also have toxin-and phorpyria problem due to die offs.

Thanks, Maria not on CAPi, cant find doc for that. Just had some single abxi.