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Help! trying to get my husband to start ABX.

Posted: Fri Feb 24, 2012 9:39 pm
by CrystalRN
Hi everyone,
My husband was diagnosed three years ago with RRMS. His MRI last week showed new lesions and he is having more symptoms, severe fatigue, foot drop, weak extremities, visual difficulties and falling frequently. I spoke with Dr. Stratton and had our neuro run the test for the CPn and his level was 1:128. He is reluctant to try the abx but I think it might help. Please I am desperate. We have two young daughters and it kills me to see him decline slowly and have this horrible sickness steal him away from doing things with them. Any advice would be appreciated.

Thanks,
Crystal

Re: Help! trying to get my husband to start ABX.

Posted: Sat Feb 25, 2012 6:43 am
by SarahLonglands
Crystal, when my husband, Dr David Wheldon, came back from his laboratory with a pack of doxycycline, I thought he was mad and started them just to keep him happy. My MS had become progressive and my right arm was paralyzed: a professional artist unable to paint. David had to make sure I took the stuff for a couple of weeks but then I was so convinced that this was right, I wouldn't miss a dose. Within a month I had regained my clear speaking and no longer sounded permanently drunk. After a few months my sharp mind was completely back and eventually any signs of clonus or spasticity had completely gone. Six months later, an mri shoed not only no new lesions but several fading away. The mri was in 2004 but since then I have done nothing but improve. I can't walk as far as I would like, and I can't run without falling over, but I have regained full use of my right arm and so I can work again at my painting.

My cpn level was only 1:64, generally not considered in need of treatment in this country (GB) but David was so sure that an infection was involved somewhere. Crystal, if you send me your email address I can send you a couple of papers written by Stratton and David, one of which lays out the course of treatment clearly. Here is an article which was in Hospital Doctor a few years ago: http://www.davidwheldon.co.uk/Ignoring- ... dence.html or on this page of mine, I have turned it into a printable pdf: http://www.avenues-of-sight.com/hownott ... olour.html The papers I can send you you would have to pay the journals for! My address by the way, is sarah@sarahlonglands.com.

Most people who would formerly have written here now prefer to use CPn Help, all lower case, no spaces, which is not just about MS but the other diseases which may be caused by cpn.

I hope your husband can be persuaded because he seems just at the right stage to be able to walk away comparatively unscathed.

Sarah

Re: Help! trying to get my husband to start ABX.

Posted: Sat Feb 25, 2012 6:20 pm
by Loriyas
Crystal
What medication is your husband currently on ( if any)? Will he go to the CPn Help.org website himself? If he will then he might be encouraged after reading the "patient stories" section. If not perhaps you could print some off for him to read when he is ready? Personal blogs may help also as he can follow a patient's journey throughout. Does he say why he is reluctant to try abx therapy?