This Is MS Multiple Sclerosis Community: Knowledge & Support

you know i've been whinning so much i've forgotten to tell the cool stuff
i have no pain below my bellybtton
no spasms in legs no cramps in legs when i tell them to move on the bed they do
no bladder issues
my head is getting clearer,i remember my pin numbers on my cards
taking a week off abx the pain in my ribs, arms and hands is unbelivable
so a couple steps forward recoupe and start again
shell





robbie, how are you getting along

Shell, that is cool stuff. Those are the steps forward, the pain is the step back. Although I don't have MS I have had this too... Pain in my joints that had not given me any trouble before, pain in my lungs which was a big surprise, a sudden attack of Carpal Tunnel Syndrome, an increase in numbness of feet and hands, more hair falling out etc. Ella on the other hand did not have pain, but her relapse took a nose dive and she had to be admitted to hospital as she could not breath.

It does take time to get some sort of understanding of what is happening to you. I think it took me six months before I could recognise a die off effect from generally feeling crap.
But in time you will know what is going on. In time you will feel a lot better about putting up with the pain and blahh feelings because you will be certain that it is making a difference.
I'm not a doctor or even remotely medically trained so what I say is purely from my reading, understanding and experience which is limited to myself and my daughter, plus the material found in the other place. BUT take care not to stop and start too often. I understand you have been in a lot of pain and anguish so it is right that you do what is best for yourself.
Just don't stop and start too often, it is better to reduce the dose than to stop taking it altogether. [/u]

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Michele,  warrior4MS, mother and champion for Ella, the MSer. The solution is out there we just have to ask the right questions.

terrible

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Had ms for over 19 years now.

Robbie, Well, if terrible means you are feeling a reaction to the antibiotics, I'm glad you feel bad, if that' makes any sense. (It doesn't make one feel better, but it's confirmation the abx are killing something inside you that doesn't belong there.)

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The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi

Going to try taking both 100mg pills in the mourning instead of one at night. Was up most of the night last night with a rash all over my back and shoulders and scalp another night was teeth chattering chills one minute and sweets the other. Seems the day is bad also but better to tolerate.

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Had ms for over 19 years now.

robbie,

It sounds like you may be allergic to the med. Can you consult with the doctor?

gwa

Gosh, Shell, that is all good stuff! I remember when I first started, I had got to the stage of both forgetting my pin numbers and not being able to use push button processes fast enough on thre phone. I was forever being put through to talk to an operator, but didn't want to because my speech was becoming slurred.

I do think, though, that neither you nor Robbie should take a week off the antibiotics, partly because to do this too often is encouraging the pathogen to become resistant to the abx, then it will be no good to you. Try grinning and bearing it and remember the good points you have listed here. You'll appreciate it in the end.

Sarah

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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.

double post

How is robbie supposed to know if his reactions are to the drug or are herx reactions?

If it is herx, he is one buggy dude.

gwa

Well, you MAY be allergic, but a lot of us had skin reactions when starting the abx. I had red blotches on my thighs, neck and shoulders for a bit. Michele will be along soon to tell you about her skin reactions, which were more extensive. I would say, unless you have trouble breathing or this reaction is more like hives, this is pretty normal. The treatment is not a cakewalk, but it works, so we tough it out through the discomforts.

Also, scalp reactions: lots of scalp itching and I lost a ton of hair, which grew back over two months, so it's a sure bet cpn invaded my hair follicles.

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The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi

Sorry, gwa, I missed your post! Yes, real allergies cause much more than hives, more like anaphylactic shock. I was itching like mad at one point, and also developed a lupus like butterfly rash cross my nose and cheeks, but it passed after a few weeks. My progression stopped sooner.

Allergies to doxy and mino are very rare.

Sarah

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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.

There you go robbie, no pain, no gain!

gwa

Yea! you have to suffer to be beautiful... I've had no end of die off reactions that have affected my skin. Small itchy spots that grew to look like erupting volcanoes, a plague of warts and skin tag, loss of hair dry skin, spotty face etc. All these symptoms continue, although with each flagyl pulse they are less prominent and irritating.
My hair regrowth is spectacular, but at times it still falls out, only the patches are not as extensive as they were when I started, when my scalp was on big very nearly bald patch.
View my progression in the first year on CPn Help.org in patients stories. Fully illustrated....

me too, I had rashes and itchy..

Geez Robbie, like Mac I think what you're going through is Terrific!!!!

yup, your shaking up housekeeping...the bugs are running!!!

Do as Sarah suggests...don't stop taking the abx. It's not easy (especially psycologically) but, do try to work through this time.

you will feel better. and then you can ride your bike!

Shell,

great news as well..don't give up- keep plugging!