This Is MS Multiple Sclerosis Knowledge & Support Community

Hi Lori,

This is really wonderful to hear. Congratulations on feeling good; Congratulations on backing that up with tests.

I will have to catchup with you at CPn Help. But, I was wondering if Dr. S talked with you about caffeine at all. We had a pretty good discussion about it and I will post soon about it, but I was wondering if you talked with him about it too.

Isn't 2 years like a WoW thing? Think of all those pulses and how good and bad you have felt. It truely is a rollercoaster.

HOORAY FOR LORI!!!!!

Ken

I finished my most recent pulse (27th) of Tindamax yesterday. This is the first time I have been able to make it to 10 days, as was suggested by Dr. S. in February. Tindamax make me tired and I was never able to deal with it for more than 7 or 8 days. This time I just made myself do it. Same response: body aches the 3rd or 4th day, more tired, some headache. That has not changed since I started this.



Interestingly, one weird thing occurs occasionally. I get HUGE hives. But I can't relate it to any antibioticsi, supplementsi or other medications. It is not from laundry detergent etc or from the environment (plants, trees). Twice in the month of May I had what I thought was the "flu". Body aches, fever, felt bad. After about two days of this I started developing hives, along with swelling around one of my eyes. Now that I think about it my ears were hot, itchy and seemed swollen also. Did a course of prednisone which of course made hives go away. Also taking Zyrtec. I saw an immunologist/allergist who ordered a ton of blood work. Took 10 vials of blood. I am going today to get results. I know this has nothing to do with antibiotics because this has occurred before I even started antibiotic protocol. I will post with the results.

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Hi Loriyas,

I'm pretty new to the scene and recently been diagnosed with MS and have a strong correlation with symptoms that many have experienced. You speak about hives when you are sick. I too get these and continuiously get them especially in the last 3 years, and they are bad; before it would be every so often. I also noticed in my research that people with a bacterial infection like CPn or Lyme get these.

I've done alot of thinking about this and have come up with a few theories and I hope for anyone to put in there thoughts:

1. A hive is an autoimmune response to a localized manifestation of the bacterial that has been killed in the skin and the immune system reacts to it to "sweep" up the left over mess. If this is the case, I would consider it as a "Skin-Herx". The reason I think this could be possible is we know that CPn can live in every cell. Many cases of my hives have been when I apply pressure to the area or heat, of course I'm not on antibiotics yet so other experiences I can't relate to yet. Is it possible in a skin pressure situation for the infected cell to "pop" or prematurely die releasing a reticular body that can't survive in the extracelluar world and die? Effect- Skin Herx.
If it is heat caused, the same applies but the CPn dies because of heat. Effect - Skin Herx

BTW- I started the NAC test 2 Friday's ago: I got sick with URI and all the others symptoms and I also got hives. I didn't know what to expect, but I have been experiencing hives when I feel like I'm having a die-off effect/ or maybe a possible flair(I think what happened to me was a Herx, not a flair; things were bad similiar to spoken Herx's).

2. This theory could be very plausible when you understand how CPn causes a weakness in vien structure. You "bleed" blood through your viens into the skin causing the hive. This can correlate with pressure and heat as well.

Either way, I hope your Dr. can help you with them. I have always been told to take an anti-histamine for mine and it does work. It just seems like there is more there, especially since it seems like almost everyone here has them and if you look at the Lyme boards they have them too.

Best of Luck and I'm glad you're doing better!!

MunchMan

30th Pulse

Finished a Tindamax pulse yesterday. I made it 10 days. Mostly experience tiredness (I wouldn't classify it as fatigue) and it seems that the longer I take it the more tired I become. Also sometimes experience headaches during the pulse. That is pretty much it.

31st Pulse

I just finished another Tindamax pulse on Saturday. This time I only made it 7 days (supposed to try to make it 10). Tindamax makes me tired every time and it is cumulative. So after a couple of days the tiredness sets in and although I can function it does interfere. So I chose not to continue for the remaining 3 days this time. The way I see it is if I have to continue the abxi therapy for an additional few months I would rather do that than be dragged out for the 10 days.



I did not experience body aches as I have during past pulses. In fact, aside from being tired I really don't think much about the pulse. I just keep on going.



I am able to work out at the gym although I am spent when I leave there. I recuperate after a couple of hours. We are working on balance and endurance mostly. So I am pleased with that.



I just keep plugging on!

Lori, you are right about tinidazole making you feel tired: I never took it for longer than five days for that reason. I still managed to be able to finish after four years, though.

In your previous post you mentioned headaches during the pulse: I am not one for headaches but I do remember that the only two times I experienced a migraine aura, though not a full blown migraine, I was doing a pulse.

Sarah

Hi Sarah!
Now that you mention it, I did not experience headaches this time. Not to say it won't happen next month! Just glad I got a break this time!

Well, hopefully it is a real improvement, rather than just a one off!

Sarah

I have been doing this antibiotic protocol for over three years now. I had my yearly appointment at Vanderbilt on Monday. I had an MRI of both brain and c-spine on April 1 and we discussed the results. There has been no change or progression in either. That is the best news ever! Of course wishful thinking makes me want improvement in the lesions but I will take what I can get!



Dr. S. asked me what I would like to do going forward with the antibiotic protocol. I asked him what he suggested. He would like for me to continue all three antibioticsi (rifampin, azithromycin, and tindamax) but go for 3 months on and 3 months off. I will then follow up with him in a year. Of course, if I feel any negative changes I can go see him earlier. I realize this is not what I have seen others on this site do but I am comfortable giving this a try.



I questioned Dr. S. about his other patients who have been on antibiotic therapy. He told me that many of them have had to stop as their insurance would no longer cover the antibiotics. So there are even fewer people for me to follow!



My plan is to finish this month off as I had been then take off the months of May, June and July. I will then resume the protocol for 3 months starting in August.

I did it, Lori and after only one year: two months off then two weeks on. I have had no new lesions since starting treatment and some have lessened or even disappeared, they were smaller and newer ones, though. I know many people are worried about ever stopping and I can quite see why, but I guess that I am evidence that it can be done. Congratulations!

Sarah

Sarah
I did not realize you did the therapy intermittently in that way. That makes me feel better! It is unnerving to stop something you have been doing for 3 years. The fear of a relapse is always there! But on the other hand, I am looking forward to having some time off with the antibiotics. I firmly believe that the decision to start this therapy 3 year ago was the best decision. My MRIs are proof of that!

Lori, I agree with you. When I first started on intermittent I was scared, although it helped being married to my doctor! It was his idea after all, just like it was his idea that I should start abx in the first place, whereas I thought it couldn't possibly work...........Sarah

Update:
Stopped all antibiotics on May 1. By May 6 tingling recurred left hand, left arm, left leg and partial face. I waited 2 days but the tingling worsened. So I restarted full antibiotic protocol. The tingling has lessened substantially but it is not to the level it was prior to stopping antibiotics. I am going to continue the antibiotics as I have several busy weeks coming up and I don't want to deal with this set-back at this time. I am going to stop the antibiotic protocol in the middle of June and see what happens.

I have talked with Dr. S. via email and he expressed surprised that this symptom returned so quickly. He agreed with my plan to start up again and then stop and see what happens in June. He said that some antibiotics had anti-inflammatory effects (like minocycline). He did not know if rifmapin also did this so is going to look into it.

I will update again in June.

As someone who started on doxycycline and then moved to rifampicin, I can tell you that it doesn't have nearly as much anti-inflammatory effect as doxy, but remember that you were also taking azithromycin, which does. If you have a busy period coming up, you did well to restart to stop lingering worry, but I feel sure that in the end everything will right itself, including the tingling! If you read Bobbie's posting, he tried out minocycline for a day at his doctors suggestion and ended up flat on his back for a few hours. Not surprisingly he is going back to doxy. I suppose that all one can do is keep in mind that if abx had no effect on MS, then they could be taken with impunity but no improvement either!

Sarah

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....