Antibiotics or something else?

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

Antibiotics or something else?

Postby mamahawk » Mon Feb 27, 2006 7:04 am

OK, I started the ABX Feb 15 - doxy 200mg once a day for now (See neuro this week and hopefully will add the azithro without too much work.)

I also upped my LDN dose from 3mg to 4.5mg on Feb 22.
When I first started LDN in Dec 2005, I had sleeplessness and very vivid dreams which dissipated after a week or two. No troubles since then at all. Since upping the dose, I sleep harder and longer than usual and am tired most of the day. LDN reaction or ABX reaction or just 'weird me'??

To tell the truth, I feel pretty crappy.

Some moments I feel *great*, really great - then it changes and I feel so awful I can't believe it... then when I try to dissect the feelings and figure out where they are coming from or where they begin or end, they change again and I question if I *really* JUST felt that awful at all since I feel so much better the next moment.
Hot and cold flashes, then that 'closing off' of eyes and ears. Food isn't very enjoyable these days either.



SO - has anyone else had this fluctuating path and if so - how long did it last? Will it only be worse by adding the next azithro and flagyl?

Thanks in advance for any help~
Last edited by mamahawk on Mon Mar 13, 2006 10:03 am, edited 1 time in total.
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Postby Bucks » Mon Feb 27, 2006 11:46 am

I can only talk to LDN and I have been on it for 2 years. My two year MRI picture - no new lesions and no active lesions but I still have a lot of symptoms.

I just uped my dose from 4. to 4.5 and doing well but remember when I first started LDN vivid dreams, I had not had any dreams that I could remember for last few years until I started LDN. Also, sleep very deep through the night, I also had some muscle stiffness but it goes away and LDN has actually helped spastic muscle groups as confirmed by my doctor.
I would no longer wake to go bathroom - before LDN I was up at least 2 x / a night.

It took at least 2 weeks on LDN new dose for dreams and sleeplessness to end and than I would sleep like a rock.

My husband wants me to start keeping a journal on how I feel before I start ABX which I plan to start in a month if all goes right.

Yesterday I went swimming and than was on my feet for 2 hours (in walker) which is not typical. I usually can stand for about 30 minutes and than have to sit down. I felt great - After dinner I was so tired, folding laundry, but worn out. I am like a rollarcoaster good - bad through out the day, so journaling will be interesting.
Your story sounds similar, I have only felt like I was going to pass out once in last ten years and it was a month ago at Target. I was upset about it as I was with my 5 year old and sure she would be upset if her Mom passed out down an aisle. I got through somehow, I was dizzy and felt myself blacking out - I some how did not but my face became very flush - burning. It was time to go home :).

My probotics shipped today - they were held up, I will post after I have been taking them for a few weeks.
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Postby wiggy » Mon Feb 27, 2006 12:21 pm

That last post was my experience on LDN - not Bucks, Bucks is my husband and we share a computer. He was logged in and I did not realize (an MS moment).
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Postby SarahLonglands » Mon Feb 27, 2006 1:01 pm

Hello Mamahawk, this is my experience of first starting antibiotics, just doxycycline for the first three weeks: I felt as though I was about to come down with 'flu, apart from a sniffly nose I felt really tired, heavy eyed and so on. In fact I must have slept more in the first two weeks of abx than I have ever done, before or since. I could then just about manage to walk up to the corner shop, with a stick, but once there I felt as though everything was going on around me but I was not part of it. I felt disorientated and couldn't think where anything was. And this was at the quiet period of the afternoon, before the schools emptied out. It didn't last though, I'm glad to say. When I started on roxithromycin three weeks later I felt no increase of any symptoms and when I started the flagyl pulses, I had none of the awful reactions that some people report, until a few days whilst and just after taking the fifth or sixth pulse. What I did experience though, was a kind of "déjà vu" feeling along with the earlier feeling of everything going on around me, but me not being part of it. Strange, but not frightening. This was only in the first pulses, but the well known tiredness and weepiness carried on. This would stop the day after the pulse, though, so you can work the pulses around what you are doing. You don't have to take them exactly three weeks apart.

This is just my personal experience but you will find some others in the Regimens section.

Sarah

(Wiggy, I wondered who this strange person called Bucks was!)
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 mamahawk » Mon Mar 13, 2006 10:47 am

Thanks Sarah~

I'm doing better- started the Azithromycin March 3rd.
Same occasional flu-like, achy, skin-hurting - was more intense after taking the azithro... but I still have not come down with a cold or flu, so I am assuming it must be the abx.
Leg tingling is still coming and going, no pattern or cause/effect I can figure out.
One great side effect of the abx is a grand improvement in my complexion - :) quite happy about that!

In general, I feel pretty great!

Will be staying at the 4.5mg dose for LDN also as it just feels better than the 3.5mg, nothing dramatic, but I'll stay there.

So - all in all, all going OK.

My Dr. will start the Flagyl in mid-April or May. He wants to do an MRI in October.... 1 yr after diagnosis.
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Postby SarahLonglands » Tue Mar 14, 2006 7:13 am

Now, you aren't the only on who noticed a change in their complexion. Perhaps this is a gauge of whether you have an infection? Perhaps I should start a new topic on CPn Help about complexions!

Mid April or May seems like a good time to start the flagyl, so best of luck with everything.

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 » Tue Mar 14, 2006 8:00 am

Really good idea, Sarah about the Good Skin Forum. I, too, after picking up virtually every cold that made the circuit for about 40 years, have had NO COLD since beginning abx. Having seen some with really bad complexions, and having a few small bouts of my own as a teen, I believe that would get the attention of those whose manifestations include this problem in addition to everything else all of us have to deal with in everyday life. I do not understand why there is not a stampede of people demanding abx in view of the fact that it is much more likely to have a positive influence with very few negatives than any other treatment. At least a year on abx has an ending, probably with benefits, whereas this disease goes on without an end - ever. And after a year, the choice can be made to stop- if no improvement - or do the whole protocol if you are better. Either way, there will be nothing lost and maybe much will have been gained. I would love to be presented with anything else that even comes close to the benefits af abx therapy. Everything else seems only to hold at stasis.

Rica
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 mamahawk » Tue Mar 14, 2006 1:47 pm

I know they do use tetracyclines to treat acne.
My skin has never been "horrible", but I have always had a blemish or two, blackheads, etc.
But last year, before I had any major MS symptoms.... I was so tired all the time, feeling totally crappy and my skin went nuts.... 2 instances of deep, cystic pimples, acne all over my upper back and chest. It was awful and uncontrollable. Something was out-of-whack with my bacteria levels or my body's ability to regulate or fight it off.

Then after I went into the hospital and was diagnosed, and had the solumedrol 5 day treatment (which can cause temporary acne increase! ugh) I had little whiteheads everywhere.... it was unbelievable, I had them behind my ears, inside my ears, on my face, chest and neck - even some on arms and legs.

I went on the Best Bet Diet and quit dairy and that helped quite a bit, and reduced stress to as close to zero as possible, and tried to get better sleep... but still had some pimples.

Since going on the abx, I've had ONE very mild pimple. One. I saw a friend the other day and she remarked about how great I looked... and I no longer need to wear concealer at all :)

I'm staying on the abx just for my skin LOL
But yes, I agree - for the MS, I can certainly do a year and give it a solid try. Nothing to lose, and everything to gain.

Now, I haven't pulsed the Flagyl yet - so when I come here whining about how awful I feel please remind me to read this post :lol:
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Postby SarahLonglands » Tue Mar 14, 2006 3:53 pm

Don't worry, I will! :wink:
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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