This Is MS Multiple Sclerosis Knowledge & Support Community

Hi Daunted,


I guess you are right ,there is no reason to wait.I am adding amoxicillin to my antibiotic combination, but i didn't understand which one do you take 3 days a week in the protocol you are on.


Thank you for your time,


Guner

yguner wrote:Hi Daunted,


I guess you are right ,there is no reason to wait.I am adding amoxicillin to my antibiotic combination, but i didn't understand which one do you take 3 days a week in the protocol you are on.


Thank you for your time,


Guner

Amoxicillin and Rifampin are both twice per day.

Azithromyicin (Zithromax) has a very long half-life so it is only taken on Monday/Wednesday/Friday morning. CORRECTION: THE LATEST VANDERBILT STUDY USED 500MG EVERY OTHER DAY, A MUCH HIGHER DOSE. At this dose, in conjunction with Rifampin 300mg BID, 3 of 4 patients cleared CPn from their CSF.

Metronidazole is taken in a "pulse", that is, 5 days per month, while continuing all the other antibiotics.

Good luck!

D.

Dear Daunted,



I just wanted to say that i started amoxicillin as well and i also wanted to thank you for all the usefull information you gave me.One other thing i wonder is what type of ms you have and how the antibiotics worked for you so far.


Best wishes,

Guner

Guner,

I am not diagnosed with MS, but hoping to avoid such a diagnosis! I had unremitting, slowly progressive neurological symptoms for a about 18 months prior to beginning the antivbiotics. My MRIs are negative but my Visually Evoked Potentials show demyelination, and I have holes in my visual field verified through objective testing. I've had four neurologists and four diagnoses, and they have disagreed as far as the issue of MS. My current neurologist is very concerned and I go in for some sort of testing 4x a year and see him about every six weeks for neurological exams.

I am doing well; I don't want to be overly optimistic, but I think I'm getting better, slowly. My primary symptom is leg weakness. The others (facial numbness, parathesias) are here to stay, I think, but the leg weakness seems to be improving.

Most importantly, I have continued to have negative MRIs and have avoided getting worse for six months!

Hi, Guys. I've been having weird neuro symptoms (muscle twitching, fatigue, dizziness, trouble thinking) for the last 2 years. MRI shows 3 lesions on my brain, and evoked potentials come back mildly abnormal. Spinal tap was normal (but the post-headache was unbelieveable!) Did have one positive ELISA for lyme awhile back. They put me on doxycycline for 3 weeks, and since there was no more pos later on, they said "you don't have lyme." Got a few more lyme tests, but it doesn't show anything. Have not been diagnosed with anything yet (except migraines), but these symptoms are intolerable, especially the fatigue. Seems to get better and worse. After reading this thread, some unexplained things make more sense to me:

1) It seems that any time I go on antibiotics for an (unrelated) illness, I seem to feel noticeably better with all the neuro symptoms- especially the brain-fog. I seem to wake up and be able to think again. The fatigue seems to lessen as well. It doesn't last long, though, since they only give you ABX for about 5 days for a sore throat, etc....

2) Before all this junk started (about 2 years ago), I had a mystery illness- a high fever (103-104), which persisted for days before breaking. I do notice some very small ( < a dime ) circular rashes on my legs from time to time, but it is dismissed as ringworm (which is funny, since when one was biopsied, it was not fungal). No lyme bacteria found in the rash, though.
I even had a "special lyme test," where they give you a shot of antibiotics to enhance the antibodies that will show up in your urine. No lyme ones were found, but I felt like I got a massive herxheimer reaction after the shot- felt warm and sick, with occasional chills- but my shortness of breath and brain fog seemed to go away for awhile afterward.

My problem is that none of my doctors seem to make anything out of the symptoms. They all pan it off as anxiety. Even if I explain that antibiotics seem to help, they don't do anything for me.... regardless of brain lesions, evoked potentials, etc.....
It's getting to the point where I've been frequently dizzy and a bit off-balance. Can anyone recommend I doc in my area (NJ or NYC) that will take me seriously and check for the possibility of an infectious organism as the cause? I would really appreciate any advice you could offer.

Thanks,

- JB

This sounds like classic disseminated Lyme disease to me. The Wheldon antibiotic regimen (has a nice ring to it) should be fatal to Lyme. Lyme has a cryptic form just like CPn; you can find stuff on this all over the web. A lot of Lyme specialists are thus using pulses of Flagyl.

In the NE you should be able to find a Lyme doc through Lymenet or one of the boards- or if you can travel, my doctor in CA, is conversant in both Lyme. and chlamydia pneumoniae. If you don't want to travel, if you Google "Lyme Literate Medical Doctor" or "Lymenet" you should be able to find a doctor who meets your needs.

I have been in touch with several people who are using Doxycycline, Rifampin, and pulses of Flagyl to treat their Lyme....much less brutal than the IV antibiotics that are sometimes used.

Hello JB,

I would just like to reiterate what Daunted has already said, but would add that the three weeks doxycycline you were given would have been nothing like long enough to rid you of disseminated lyme. There do at least seem to be more 'lyme literate medical doctors' on your side of the Atlantic, though.

Sarah

Thanks for the info, guys. Hopefully I can get someone to take me seriously. I had a feeling that 3 weeks wouldn't do it, but a lot of doctors do not listen to what their patients have to say....
I'll let you know how it goes.

- JB

Hi all,

Next week i am going to complete one year of being on antibiotics and i tought the time of writing my tread has come but before that let me describe myself a bit.I am 35 years old male 197 cm tall and 90 kg.(6,7 tall and 190 pounds),i was diagnosed ppms in 1993 when i was studying in San Francisco , Ca.My symtoms were loosing balance when closing my eyes ,getting tired easyly when walking and not being able to run like i use to run.In year 2000 i start using wheelchair and now i can only use my arms and hands below my shoulders.

July 2004

I started minocycline 100mgx2 and rifadin 300mgx2 a day.The next day i felt my spinal cord was more heated than the rest of my body.On the 15th day i had 38.5 degree fever and flu like sendromes ,i stayed in the bed for 7 days.This was my first herx reaction.I also had popping ear when i open and close my mouth, just like in the airplane landings.For the next three months i havent had anything else besides popping ear and pain in my foot.


november 2004

I had my second herx reaction which was 15 days long with pain in my kidneys and my urine was like transparant jello.I had abdominal pain as severe as in my kidneys.Because my urine was like a jello i kept checking my urine visually in a plastic bottle.Every two or three days the bottom of plastic bottle was getting dark which never happened before i used antibiotics.


December 2004

I switched to INH 100mg.x1 rifadin 300mgx2 metronidazol 500mgx2 a day without pulses which clears the infected immune cells from the body.For the next three months i kept taking this combination without any side effects,i had mild abdominal pain,tingling in my feet and burning sensation of my spinal cord.The bottom of the plastic bottle was dark red after i switch to this combination.



March 2005

I had the hardest herx reaction for 45 days,i lost nearly 20 kg. my brother and mother was worrying about me ,they tought i was going to die.They scared me too then i took cortisone (prednisone) to surpress my immune system which ended my herx reaction the next day.End of march i swithed to the combination of doxy and rifadin with pulses of metronidazol.


April 2005

I had severe joint pain in my knees and my hips and severe pain in my feet.I also started having swelling in both my legs and feet.


June 2005

Swelling is all gone now but a horrible pain started in my lover spinal cord which sometimes makes me moan.



Good luck to you all.......

yguner,

PP MS at 23 - my neuro told me that PP MS was a disease for those in their 40s and 50s, whuich shows you how much they really know about this disease. Your story should be posted on the wall of every MS researchers room to focus them.

You look like you have seen some bad reactions to the anti-biotics. But are they actually helping at all? Are you feeling any better?

You are incredibly brave facing such challenges. I read your story and had to conclude that life is a bitch.

Good luck. Be brave.

Ian

Hello Guner,

My goodness, you are going through it, aren't you? You did say on page one that this had stopped the progression, hopefully this is still the case, because PPMS tends to be the most difficult thing of all to treat.

However, if you are permanently in a wheelchair and with only limited use of your arms, at the age of 35, you would try anything. When I started the antibiotics, with SPMS, I had an EDSS rating of about 8 and going down, now I have pulled back to about 2, but most of my lesions were in my brain, where there is a lot more space to find new pathways. The trouble is with spinal chord damage there is not much space to work around, but I think determination works wonders. Anyone with any chronic disease needs determination and you have that in droves.


David is of the opinion that he maybe started me on metronodizole too quickly after three months, so he now recommends six months for most people, so you might be wise, if you are going through a very bad patch to leave of the metronidizole until it has passed. I did last weekend, I must admit, when temperatures here in Bedford hit an unaccustomed 33 degrees. What a wimp! I was nearly at the end of my booster dose, so
I should have just braved it. Reading what you are going through, on the other hand, completely humbles me, so as Bromley says: Good luck. Be brave.


Sarah

I fgot to say earlier that red colour in urine is par for the course with rifampicin. A general darkening sounds like a porphyric reaction, so mix the two together and you get dark red. This would seem to indicate a move in the right direction.

With regards to my chickening out and stopping the booster dose of abx after only one go of metronidiziole, I am now told that I need to start the whole lot again for full effect, so that serves me right!

Sarah

Hi Bromley,

Thank you for your supportive post which makes me more brave.Yes i have seen some bad reactions to the antibiotics but i think it is because of huge bacterial load i have developed in 13 years.I had some improvements but not related with my ms symtoms yet, like i need to breath less when i am talking and my progression stopped since i started this regimen.I now know one year wasnt enough to clear the infection from my body, so being patient is all i have to do at the moment.
Are you on antibiotics too?We have a saying in turkish that everything is for humans.


Take care,

Guner

Dear Sarah,

I think i am going through it hopefully, things are making me excited as the time passes because all those billions of parasites were living in me is getting cleared from my body.To think that all those years they have eaten me inside my body makes me sick.It has been one year since i start this regimen but i just start feeling my spinal cord is getting cleared from the infection, so to expect any improvements until now would be early i guess.As you mention there is not much space in the spinal cord to heal than the brain makes me kind of sad but as you said determination works wonders, i hope it does.
About my urine and the plastic bottle i must say that i see particals peeling from the bottom of the plastic bottle which i think dead organisms sink and adhere the bottom of the bottle than peels out when it gets thicker in time.
I also wanna ask you about coffee and sugar ,do you use them or not because during last year i didnt drink coffee or used sugar.I have read somewhere cpn loves sugar ,is that true.

And also you said you were going to change to tinidazole instead of metronidazole,did you change your mind about that.
One last thing is you and your husbands effords to the msers humbles me too.

Take care ,

Guner

Dear Guner,

First, the tinidizole: For this time I am going to stick with the metronidizole, purely because I have plenty left and I hate visiting my GP, who will come out with all the usual remarks like, "How did you get here today?" (Like she doesn't quite believe in what we are doing, and thinks that I shouldn't be able to walk or cycle there.) When I run out, though, I will probably change.

You are very unlucky that all your damage is in your spine, but to look on the bright side, your head is obviously, from the way you write, totally clear. And you certainly have determination. You do say that the progression has stopped, which is the main thing. If you just stopped right now because you haven't felt any bigger improvements, I'm afraid the progression would start again. I know from someone else experience, but she has now started again, thank goodness and is improving once more.

You said: "I think I am going through it hopefully, things are making me excited as the time passes because all those billions of parasites were living in me is getting cleared from my body. To think that all those years they have eaten me inside my body makes me sick." This is what I felt when I eventually saw my first scan, but luckily it was alongside the second one. I was horrified that all this stuff could have been going on inside my head without me knowing anything about it. I mean, I didn't even get headaches!

As for the coffee and sugar, well, you might be better to acquire a taste for coffee without sugar. I used to drink both tea and coffee with sugar when I was a child, simply because my mother thought that a child wouldn't like it any other way, but one day I decided that I would stop, so I did, and it tasted far better. You will soon get used to it, because you get the real flavour of the coffee.

Take care and keep us posted!

Sarah