This Is MS Multiple Sclerosis Knowledge & Support Community

I'm doing the best I can, but it's difficult. I'm on a slightly new road trying to document Kim's progress. I am reading more now as you'll see in my next post, but it's overwhelming sometimes, trying to get to CPn Help and keep up with everyone there. Don't I get credit for figuring out naproxen?

If I remember correctly, your appointment is first........

I have been thinking about this past year (as I am sure everyone else is doing). But I am focusing on the CAPi therapy for me during this year. As I look back I can see how far I have come and thought it might be helpful to others to blog about what has changed.



A year ago I was very concerned that things were turning for the worse for me. Vision issues (double vision, nystagmus) had not resolved from the last flare that I had, balance seemed to be worse, "wobbly feeling", brain fog, focus, tremor, dizziness, feet pain, constant bladder infectionsi, fatigue, feeling blue, many days that I just didn't feel well, tingling in left arm, hand and foot



With all of these symptoms my MS was considered "mild". When I went to Vanderbilt to discuss CAP protocol the doctor suggested that because I was considered "mild" perhaps I should wait to start antibioticsi until things worsened. When I posted that on this site many many people here said that I should not wait-that the earlier I start on this the better it may be for me. I am glad those people convinced me to get started which I did last January.



I have done things this past year that I am certain I would not have been able to do with the way I was feeling at the end of last year, if I had not started on antibiotics. For instance, we bought and sold two houses, moved, entertained 90 people here at our home for a holiday party and have had family visit for the past two weeks. I was able to handle all with no problems. I know I could NOT have done this last year.



I have seen improvements in tingling, dizziness, balance, brain fog, vision, have not "wobbly feeling", fatigue, my feet hurt less, I really don't have days where I don't feel well all day (some days I feel better than others but not like before). And no new flare!



My tremor is still around but in looking back over my life it was probably my first symptom many years ago so it may be a long time before it goes away, if ever. I can live with that. Bladder infections are gone but I think it is because I take Flomax as I know I am still going a lot and don't empty as I should. But again, it didn't get worse so I can live with that also.



I am certainly not done with antibiotics by a long shot but am reporting this because I feel that by doing the protocol I have improved a lot. I have a follow up appointment at Vanderbilt in February and an MRI scheduled next week (both brain and spine). I am looking forward to seeing what that shows.



My husband and my family comment often on how well I am doing. They all would be happy to say that I have had marked improvement this past year. My GP comments on how well I am doing and he has become a believer in this also.



I am looking forward to this year and what else will improve. Lastly, I have to say to those who convinced me into starting right away (some rather strongly!) thank you for your concern and motivation. I probably wouldn't have gotten going without it!



Lori

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Lori, Thanks for such a thorough documentation of your situation. So many people forget how it was 'at the beginning' and don't realize how dramatic their improvements have been.

Just think; a year ago you weren't sure what to do. You could be here, a year later and with no improvement, still holding off starting antibiotics, but, instead, you're hosting houseguests and throwing a party for 90 and not crashing for several days to recover. That's huge. I'm so happy for you!

Lori, I didn't realise that last year you felt you were getting worse. If so, you started just at the right time and you won't have any pesky deficits like me that seem to take agrs to change after the initial improvements. Therefore, I'm not sorry if I was one of those who pushed you to jump.

You had mentioned before about your husband and how he thought you were doing, but not about your GP: now that is good news!

Sarah

Sarah
I don't think I realized that things were getting a little worse for me last year, until I reviewed my log that I keep and was reminded where I was and how much better I am this January. Many MS symptoms kind of creep up on you and you don't realize it. It is not that I was going downhill rapidly, it was just that things weren't quite as they should be. Fatigue for one, balance for another. And you are right, I started at a very good time. As you well know, I researched the subject and thought about it to death! I finally decided it was time to plunge ahead and I am sooo glad I did! Sometimes a person just needs a little extra push and I am happy I got one!

Lori

Too true, Lori: David's cardio-vascular problems just crept up on him in a similar way and the push he got was my rather more rapid decline with MS. Speaking of which, fatigue was the big thing with me that crept up gradually, but for quite a few years, starting soon after we met in 1993. David would never have thought to treat himself if he hadn't seen my rapid decline and been so scared and worried. He probably would have died first though, but now you are all stuck with us both!

Sarah

Just got back from first MRI since beginning antibiotic protocol. Had cervical MRI followed by brain MRI, with and without contrast. Am anxiously waiting results. I should hear tomorrow afternoon when my doctor calls with the written report. I will post once I hear the results.
Lori

Lori,

I also didn't know you felt like you were getting worse. It's great to read your list of accomplishments! You've motivated me.

Do you feel like you are regaining things post pulse, meaning is the month like a yoyo? Does the Tini bring you the yoyo effect too? How is it different to be off flagyl?

Sarah,

I didn't know about David's heart. I've been reading about Cpn and atherosclerosis, is this what he was treating? It all seems so connected.

Ken

Lori, I'll be watching with baited breath!

Ken, at the risk of kidnapping Lori's blog, yes, it is all connected. Read his Patient story from CPn Help: CPn Help/?q=node/132 That's one reason why I was interested in Cheerleader's recent postings here.

Sarah

Ken
As I told Sarah, I don't think I even realized fully that I was getting slightly worse last year. Only in retrospect did I see it. But I think down deep I knew it because that is what made me seek out alternatives and ultimately antibiotic therapy.

The week I do tini is not a week that I plan to do a lot of things. I get extra tired after 3-4 days and generally don't feel well that week. But there is no comparison to how I felt on flagyl. I think I may have told you and Kim when we had lunch that flagyl made me nauseated and I HATED the taste. It also made me tired, etc. but I really really dreaded flagyl week. I don't feel the same way with tini. It is so much more tolerable.

Lori

Loriyas wrote:I think I may have told you and Kim when we had lunch that flagyl made me nauseated and I HATED the taste.

WHewwww!!!! I thought it was me.......

Feelin' Strooppy.....
Ken

Lori, I just read your post over on CPn Help. Remember when I said you'd soon be giving others advice and encouragement? Well, you're there!

Fingers crossed for you; it's always nice when MRI results confirm what you already know, so we'll all hold our collective breath for you.

Hi MacK!
I didn't post much during the past year as I felt I hadn't been doing CAP long enough to feel qualified to say much. But after a year's experience there are some things that I have experienced that may help others. Still a way to go but at least I have some history with this now!
Lori

Results of MRI dated January 6, 2009

As I said on Tuesday, I would post results of the MRI I had that day. I went to a different facility this time as my GP (who ordered the MRI) wanted me to go to this facility. It was an open MRI machine, which is the first time I had used one. The magnet is a 1.0 Tesla. This machine is supposed to be the newest technology so is supposed to be comparable to a 1.5 Tesla closed machine. With all of that said the results are :

Brain: It appears that everything is the same as the MRI I had done Oct. 2007 with the exception of a new finding in the left frontal and left parietal lobe. However, the report goes on to say that this could likely be due to the differences in technique (newer, more advanced machine). So those lesions could have always been there, just not picked up by older machine. Also, states there is no enhancement with gadolinum

Cervical: C3 and C5 lesions less conspicuous compared to previous MRI (this is really good news to me) C7 is the same as last time and C6-7 is similar and slightly more conspicuous from last MRI. But again could be due to the improved machine. No contrast was used for this study.

Bottom line: My GP ordered this MRI so that I could send it to doctor at Vanderbilt. My GP's comments were that 1) there has been basically no progression of the disease since the last MRI and actually some improvement and 2) although it is not a complete "apples-to-apples" comparison you always want to use the most updated, advanced equipment available at the time. So there will always be slight discrepancies when you use different machines. He also told me that they are to treat not to the MRI but to how the patient is feeling. His observation of me in the past year is that he sees improvement.

The first goal of antibiotic therapy is to stop progression, which appears is likely. The second goal is for improvement in some areas, which also appears to be happening. (These are my conclusions). I am happy that the MRI looks as good as it does. But even more important is how I feel. I KNOW that I am doing better than a year ago and am encouraged to continue. I go to Vanderbilt in February and am looking forward to hearing the doctor's interpretation of all of this.

If you have any question please feel free to ask.
Lori