loriyas antibiotic log

[Loriyas]

I did not end up stopping antibiotic protocol in June as originally planned. My daughter graduated high school in May, we had a busy summer of traveling and vacations, and then I had to help her get ready to leave for college. With all that I had going on I did not want to change my medication routine in the middle of everything!

So I waited until September 6 to stop all antibiotics. By Sept 10 I had a return of the "tingling" sensation although not as severe and annoying as the last time I attempted this. I notified Dr S. who told me he was at a loss for the reasoning. I had told him that I suspected it was caused by the anti-inflammatory effect of the antibiotics, particularly the rifampin. I asked him if he thought minocycline might help. He thought that perhaps I was right and that if I wanted to give minocycline a try that would be fine with him. He did say that the reappearance of this particular symptom does not seem"ominous" to him, which put me at ease. I told him I would give it a few more days to see if the tingling became severe enough to try the minocycline.

At this point the tingling has not worsened. In fact, it kind of comes and goes. So I will see. I have had no other symptoms return at this time.

[SarahLonglands]

Lori, this is exactly what David thinks as well, although he isn't sure about the rifampicin. Neither am I come to that: when I stopped doxycycline to take rifampicin I felt a definite lack of immunomodulation and I was less sure with my walking for a while. For this reason, minocycline might be your answer if the tingling gets too annoying.

Sarah

[Loriyas]

Thanks Sarah. The weird thing is the tingling comes and goes. Right now it is not bothersome at all. However, it could be back in an hour! So the question becomes should I take the minocycline to keep the tingling at bay or should I wait to see if it worsens?

This is truly 1) an experimental therapy and 2) each patient reacts differently. We just have to keep on trying!

[Leonard]

There is no doubt in my mind that antibiotics have an effect on MS. I saw continuous improvement while on them. And then to have a symptom return once I stopped them cemented that thought for me. I will see what happens when I stop again It may be that I am not done with antibiotic protocol after all. Or perhaps I will need a change in type of antibiotic or dosage. We will see in June....

Of course antibiotics has an effect on MS. Have a look at:
http://www.thisisms.com/forum/general-d ... 8-210.html


Put quite simply, of course CCSVI has to do with MS, and MS with CCSVI. CCSVI will often be congenital (genetic factor in MS is known). After many years of CCSVI, the tissue of the vessels (endothelium and everything that is there to help regulate the system) will get weak or damaged. The BBB becomes permeable.

Then the gut comes into the picture. Autonomous gut bacteria may trigger the immune system. These Swedish scientists were on the right track. http://www.scientificamerican.com/artic ... nce-of-gut In particular the segmented filamentous bacteria are suspect.

The gut micro-biota may be somewhat influenced by our diet (our "modern" Western diet that is rich in sugar is not helpful and may shift the balance to the wrong bacteria; fasting once a year is healthy, a Swank diet is too) and also by vitamin D. Yes, vitamin D helps to maintain a healthy balance in the gut !

Once the immune system is triggered, a complicated cascade of events will be launched and T cells proliferate through the bloodstream. In those places where the BBB is damaged or permeable they will do their destructive work. In our case, that will be in our CNS. Others with an unhealthy gut micro-biota may develop diabetes2 or something else.

ThisIsMS. All that remains now is to try to get things under control. The etiology of our disease lies in the gut, combined of course with the stenoses in the neck. So that is where the focus of any treatment plan will need to be.

I am sure that for shifting the balance of microbiota in the gut to a healthy balance, this need antibiotics. I understand that minocycline is in the picture, but there may be other antibiotics too (IVth generation) that are more effective on breaking down the film of the wrong (segmented filamentous) bacteria. ECTRIMS / ACTRIMS that will be held in Amsterdam in October 2011 will undoubtedly pay attention to these new insights. http://www.congrex.ch/ectrims2011

[Loriyas]

I have not received the minocycline prescription yet although it has been called in. This is just a trial and error thing. There is no "standard" for this.

I do feel as if my walking is slightly worse. I also feel more fatigue. I am going to wait a few days to see if that remains the same. I don't want to seem paranoid having only stopped antibioticsi 3 weeks ago. However, I also will not wait too long because I had success with the antibiotic protocol. I will not let those improvements slip!

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[SarahLonglands]

Lori, although I can't help but feel that what you are feeling is caused by worry rather than anything else, you are quite right to start a course of minocycline. What we are doing is just a trial and error thing and as you say, there is no standard for this.

I hope your daughter settles well at university: this was our changeover weekend in the UK, with people travelling all over the country, getting ready to start a new life!

Sarah

[Loriyas]

Sarah
I have sent you a pm.
Lori

[Loriyas]

As of my last entry I had stopped all antibioticsi at the direction of Dr. S. As I mentioned in my last update the tingling sensation had returned. Dr. S agreed with me that a course of minocycline might help with that. I began minocycline and the tingling sensation lessened but did not go away completely. However, by October 4 my left leg had become much weaker. It felt like I had a 5 pound weight strapped to it. There was also some increase in fatigue. I also no longer had the "general sense of well being". I felt that something was wrong. I was concerned. Oct. 6 I decided to re-start the antibiotic protocol. I started with rifampin-had body aches all afternoon just like when I originally started antibiotics. I emailed Dr S and told him that I had re-started the protocol. He agreed that it was a good idea. Oct. 28. Tingling almost non-existent. Left leg is better but still weaker. Now it is not a 5 pound weight but more like a 1 or 2 pound weight strapped to it. Fatigue is much improved and I no longer feel as if I am going downhill. I have also re-started the azithromycin and begin a pulse of Tindamax next week. So......I am not done with antibiotics at this time. I will update after the Tindamax pulse.

[Interrupted]

Thanks for updating, was curious as to what it would prove to be, seems it was indeed a genuine resurgence?

[Loriyas]

I believe it was. In fact, when I emailed Dr S to tell him about the worsening of symptoms he commented that this seemed to prove (I guess to him-not me!) the connection between the bacteria and MS. I understand that he has not had enough patients stay on the protocol long enough for him to come to a definitive conclusion. This helps him with that!

[Loriyas]

Saturday Jan 14 I stopped all antibiotics again. I was instructed by Dr S to do so last year. When I did this in October I had a return of some symptoms within a week. So I re-started the protocol and informed Dr S, who agreed that it was what I should do. He said I could give another try if I chose. So that is what I am doing. I will update in a week and will see if I get a recurrence of symptoms or if improvements remain. I see Dr S in April and I want to be able to provide him with update information.

[Loriyas]

So this didn't take long....



So 9 days have passed since I stopped the abxi protocol again. I started minocycline the day I stopped all others in the hopes that the mino would keep the tingling sensation from returning. It did. However, I noticed a continuing weakness in my left leg just as happened the last time I attempted to stop. I kept hoping I was imagining it. But today I was working out at the gym with a trainer (I have worked with her for several months) and she said how much weaker my left leg was compared to my right. I had not told her I had made any changes in my medications so her observation was completely unbiased. And the left leg was so much weaker that we had to use lighter weights for it than for the right. She then made the comment that I was not able to raise my left arm with the free weights as high as my right. So I knew at this point that I had not been imagining the change. She could see it and could compare to how I had been in the past. I was able to get an appointment with my GP this afternoon. After telling him the above information he had me do a few tests to check for weakness. He, too, saw a considerable difference between the left and the right leg. He told me right then and there that he believed that I needed to go back on all 3 antibiotics immediately. He said that I had success with them and it was apparent to him that the protocol has validity (the good news is that I have now made a believer in him!). So I started Tindamax this afternoon and will continue with the rest of the antibiotics also. So within this past year I have attempted to stop the abxi protocol 3 times. And all 3 times I have had a return of symptoms. So I am either 1) not done yet or 2) belong in the group who will be taking antibiotics forever. Whichever way it ends up I will continue on as I do not ever want to go back to the way I was before I started this journey 4 years ago. I see Dr S at Vanderbilt in April so will see what his thoughts are at that time.

[SarahLonglands]

Now, this is very strange, Lori: I don't really understand it: if minocycline stops the tingling, why not the muscle weakness as well? The other abx is only to stop resistance developing. I guess there must be more to it than is understood...................Sarah

[Loriyas]

Sarah
If I had to guess (and at this point that is all it is) I would say the minocycline is not strong enough to help with muscle weakness. I started the mino at the same time I stopped all other abx to hopefully keep the tingling at bay which it appears it did. But the increase in weakness was not. I know that rifampin is not supposed to be anti-inflammatory. But there is something there because I do not have any problems while on it. I am currently doing a Tindamax pulse (7 day) and am getting slammed with body aches and headaches. It had been about 2 months since my last pulse and I was not getting as severe reactions when I was doing the pulse on a regular basis.

There is definitely more to this than we know for sure! All I know is how I feel when I stop. And when weakness is noticed by others ( my trainer at gym) I know to pay attention!

We will see what Dr Sriram says in April.

[Loriyas]

I titled this blog "Vanderbilt Update" but that title seems inadequate with all that has transpired with me since my appointment in April! After a long discussion with Dr. Sriram he suggested that since I have been on the antibiotic protocol for over 4 years we should try to see what happens if we make some changes. He has very few patients left on this protocol for this long a period that there is no definitive pathway a paitient should go. I have been doing really well and and actually was not seeing much reaction to the antibiotics, if any at all.
Sooooo the plan was to stop the azithromycin, continue on the Rifampin twice daily, and then a Tindamax pulse of 10 days/month. In addition, he suggested I give Ampyra a try as I now walk with a limp if I walk for a period of time. He said I would know within 2-6 weeks if it was helping. So I continued the Rifampin but never even made it to the Tindamax pulse. Both my son and I came down with a stomach virus about 2 weeks after returning from Vanderbilt. With this virus we could not keep anything down so I was unable to take anything. At this point I had not begun the Ampyra. I had no return of MS symptoms so I decided not to re-start anything for a bit.
A couple of weeks after the virus I started the Ampyra. Within a few days I developed a UTI. I stopped Ampyra, started on Levoquin and the UTI cleared up. I stll felt my body needed a break so I did not re-start anything. My intent was to re-start the Ampyra when I felt better and evaluate at that time what I needed to do regarding antibiotics. I still had no return of MS symptoms.
I never re-started anything. I developed an infection in my toe as a result of a pedicure (you can 't make this stuff up!) I was prescribed doxycycline for the toe infection. The first dose was ok. The second dose resulted in SEVERE stomach pain, which also moved to my back. Prescribed Levoquin, toe infection cleared but stomach and back pain never subsided. My GP ordered a CT to check for appendicitis or kidney stone. CT came back clear. Only conclusion left was a reaction to doxy (a serum sickness). I talked with Dr Sriram who said to hold off of everything until this is all resolved. We will then discuss the next course of action at that time. I continue to have back pain so not completely recovered. I am now thinking this is perhaps spasticity. But I have had no reappearance of my original MS symptoms. So I am still holding off of antibiotics for the time being. I am currently taking Vicodin for the pain and may add something for spasticity. We will re-evaluate in 2 weeks after I see what transpires.
I just wanted to update from the appointment as I had said I would before I went. I don't want this to discourage anyone considering the antibiotic therapy. We are all different. I have had a lot of success with it over the past 4 years. And I may be continuing for 4 more years-who knows! This is just a bump in the road! And a reminder that this therapy is NOT for the faint of heart! Feel free to ask any questions!