Continued Progresson on protocol

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

Update on my husband

Postby PattiD » Wed Feb 15, 2006 12:25 pm

I have not posted for sometime because my husband continues to decline, not any improvement in four months. I am not sure what to say. He tried Lipitor for a short time, but when he took the pulse, he felt too terrible to do both.

He has been true to the protocol everyday. I am not sure if he will continue the protocol after he starts Rebif this week. I have not found any words of encouragement to convince him to keep on with it. David told me that some people just do not improve-so I am not sure where to go from here. I will keep putting the pills in the the weekly pill box, and if he takes them, he does. I have had to learn, this is his journey not mine. He is a very private person.

I am not sure our marriage is strong enough to survive his anger, frustrations, and loss of dreams, but I am trying to support him.

I hope others keep improving.

Patti
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Postby Anecdote » Wed Feb 15, 2006 2:09 pm

Patti, David used to say try for a minimum of six months, but has now upped this to a year to allow for the differing rates of improvement that some people show. Sriram also now does this.

What both David and I suggest is that you write to Rica (Katman) to ask her about when she first started the treatment. She continued to decline for a while, but kept on with the treatment because with PPMS there is not much of an option. She continued to take avonex util very recently. Now she has been completely transformed, is even attempting running at 67 and has the honour, like me, of being dumped by her neurologist, who doesn't want to see what is in front of his eyes.

Spring will soon be here, hopefully for you both as well.

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 Katman » Wed Feb 15, 2006 2:31 pm

Sarah You did it again! I think you are psychic.

Patti, in all seriousness, I did indeed continue taking my pills and going through the motions of living. I am PPMS and really did not have any other plans, at least any that I was physically capable of executing. I did get much worse- to the extent that I barely remember several months of winter a year ago. Eight months are virtually missing from my memory beginning soon after I began abx. Eight months later came the beautiful day when I realized that I was getting better. Those of us who have very aggressive versions of this horror have no options except the aspirin-like protocols (so-called) of current practice.

Yes, I had 75 shots of Avonex and quit taking it early last Dec when I had left it in the dust behind me. That little prank got me disowned by not one but two neurologists. I wasn't going back anyway because I realized that we MSers are only bugs under their microscopes, because that is what eventually remains of our cognition

We are trying very hard to reach your family. We all know to our bones what you are going through. We will go with you through the desert that is MS.

Rica
Last edited by Katman on Wed Feb 15, 2006 2:38 pm, edited 1 time in total.
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.
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Postby MacKintosh » Wed Feb 15, 2006 4:58 pm

Patti - I keep calling this an 'investment in the future'. Both of you must, must adopt that attitude, as well. I agree with Rica that there isn't much choice, anyway, so why not continue the abx? The option is CERTAIN decline. Abx affords the possibility of a return to normalcy, which NO other 'treatment' offers. You might also contact Yguner (Guner), who is having improvement TWO YEARS later, when he had no right to expect reactivation of feeling in his spine, according to conventional medical experts. Yet he is. Had he stopped abx at four months, where would he be now? As for your investment, it is in your husband. Hearing this diagnosis is pure hell on earth. Going into a rapid decline is like someone using a razor blade to scrape your life and abilities away and you are powerless to stop them. It is one thing to love someone going through this. It is another to be the one experiencing it. I was hateful, depressed, angry, fatalistic, bitter and just generally a train wreck when I began this lovely trip. My poor friends were reeling, experiencing the many shades of 'me'. You have to be tough FOR him right now, because there are just times when he won't be able to be tough for himself. A few months of this isn't worth losing the marriage. Tell him we're here. Any hour of the day or night, if need be, but he should choose to try, not choose to lose the chance. We're here for you, too. (But you knew that already, didn't you? :)
The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi
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Postby LifeontheIce » Wed Feb 15, 2006 6:06 pm

Patti, I feel the same way now as before.Your husband should not stop the antibiotics. It will be difficult later to distinguish what really helped, but at least he would not feel left out in thye cold. Don't give up on your marriage. It is the time he needs you the most, no matter how obnoxious he is now.
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Postby remnants » Thu Feb 16, 2006 12:15 am

Hi Patti,

After reading your posts regarding your husband, I felt compelled to respond. My husband has a serious heart condition. He had a defibrillator implanted several years ago. Initially he was angry, bitter and often depressed. In addition, he was very scared. Later he confided that he couldn't understand how this could've happen to him, he felt so invincible, so strong. He wasn't always able to express these feelings. Initially he was too overwhelmed to express his feelings effectively. It took several years before he was able to express his deeper thoughts & fears. I think he had to get past the immediate fear of death and pending doom, before he could share these deeper feelings. It was a long and difficult road. There were many times that he didn't want to go on with life. Even today he still worries and gets depressed. There are times he feels tired, or has a headache, and will immediately attribute these things to his condition getting worse. I make every effort to keep him focused on the positive things of daily life or at the very least, I try to keep his mind off of the current concern/symptom. I can't tell you how many times he felt certain that his condition was declining, then would visit his doctor to learn that his condition was stable and his mood would improve significantly and he would feel better physically too.

Certainly a considerable amount of our ability to confront his fears and concerns comes from the experience of having survived numerous, very trying (heart attacks) moments. Each time we overcame a crisis he found a bit of inner peace.

You've indicated that your husband continues to decline, despite trying numerous therapies. First, I want to tell you that I know a woman with MS - diagnosed just six months before me who declined rapidly, experiencing nearly every symptom attributed to MS. She was hospitalized several times. She was confined to a wheel chair for several months. She was extremely depressed, tried the CRABs and LDN too - nothing seemed to help. She's doing fine now. She walks fine and has only minimal residual symptoms. She's not cured. She did not try the abx regimen. The point being that your husband's decline does not necessarily mean a continued downward spiral.

I think most importantly at this critical stage, your husband needs to have some hope. Do you have the support you need to cope with his condition? I strongly urge you to build a support network of your own to cope. I disagree that this his journey alone. It is clearly affecting your life too. It seems that you're both reaching desperately for that improvement or cure to the extent of overlooking your emotional needs. Definitely prepare and commit to the long haul, but then focus on one day at a time, or an hour at a time if that's what it takes.

There's a book entitled, The Anatomy of Hope, How People Prevail In The Face Of Illness, by Jerome Groopman, MD. I highly recommend this book to both of you. I think at the very least you will find it inspiring.

Cindy
Every morning I awaken torn between the desire to save the world and the inclination to savor it.
- E.B. White
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Postby yguner » Thu Feb 16, 2006 4:30 am

Hi Patti,

I am a ppms patient since 1993.My sickness slowly but constantly worsened until 2004 ,the year when i started abx treatment.Now after 20 months on abx. i can say it is really scary to herx.When i had my first herx reaction it was just like flue reaction to me ,i couldnt even move or turn in the bed.But after 5 days i became normal again.I had these herx reactions 6 times,the longest one lasted 45 days.And on my 15th month i had the last one.
Now on my 20th month,i feel an activity in my spinal cord which i have never felt in mylife before abx.My disability is the same, i have more energy and my double vision is gone.
Finally i would say keep your husband on abx.He will feel better later.

Guner
On CAP's protocol for Cpn in PPMS since June 2004 - Currently: Doxy 100mgx2/day - Roxy 150mgx2/day - Flagyl 500mgx3/day (Continuous protocol since sept.2006)
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Thanks-but I am not the patient

Postby PattiD » Sun Feb 19, 2006 10:15 pm

Thank you for your words of support, but I have had to realize this is my husband's disease not mine. He feels I have pushed him to many therapies with no positive results. With only continued progression, hands are curling, falling more with legs unable to have the strength to pull him up; He fell in downtown, and two strangers had to help put him back on his feet. I am not sure what I would do if I was him.

Do not get me wrong, I want him to stay on the ABX. But after so many treatments have failed him, he will need to decide even if I disagree. I wish I had more to convince him. His doctor will give us the ABX, but does not believe that he should stay on the ABX unless he wants to. He hates taking all the pills, and complains everyday. I read him your posts, but he feels his disease is different from yours.

He plans to start Rebif this week, I hope he stays on the ABX. I keep his pill box full. I hope something changes so he will be motivated to stay the course for at least 6-9 months.

Thanks for your support-time will tell
Patti
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Postby LifeontheIce » Mon Feb 20, 2006 6:09 am

Good luck to your husband. I hope Rebif will make him feel better.
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