This Is MS Multiple Sclerosis Community: Knowledge & Support

[robbie]

tried one of those minocycline this morning about an hour later got hives tight chest sore mouth hard to swallow lasted for about 5 hours and then slowly got better couldn't move my legs for that time and pissed myself wasn't fun

[SarahLonglands]

Well, now I definitely see why David prefers doxycycline because of its fewer side effects! Will you try it again to see if it was just a one off? Please let me know..............Sarah

[robbie]

going to keep taking the doxy sarah if i can get it from my neuro

[SarahLonglands]

Best choice!.....................Sarah

[robbie]

my neuro agreed to the doxy not sure why but i do better taking them as soon as i stop i feel really bad both in my head and body. see how it goes from here its been over a year now and no progression according to her. it feels good just for her to agree and belive me that it helps even though i can tell she is wondering why i bother

[leetz]

you bother because it US the patient's that will find the cure..not the neurologist or the pharma companie's...I tell friend's and family the real deal...WE gotta fight for US period! keep up the good fight!

[robbie]

thought i should write a summary of my abx experience. i did not follow the Weldon protocol but one suggested by the Lyme literete doctor that i was able to find in Toronto
i was taking for 8 months
IV Ceftriaxone 2gm a day
Flagyl 500 mg twice a day
Azithromycin 250 mg twice a day
Doxycycline 200mg twice a day
total= 3900mg a day
Acidophilus 2 tablets a day
this doctor had me do this thinking of Lyme or any of it's co-infections. i tested negative but went ahead anyway because of the improvement i had just taking Doxy by itself on my own. Did not spend the $400 on an American test which is more accurate and reliable, just thought i'd go for it.
I had some incredible thigs happen -able to climb stairs on good days
-used a walker more often
-much less spasticity
-better bowel and bladder control
-no head fog
-no depression(very bad at times)
- other things as well
being on this site you don't know what a person is really like or how they are truly doing with their ms so it's hard to tell someone how a therepy has affected you.
i continue to take the Flagyl and Doxy because there are still some benifits that have lasted after stopping the mega dose. When i did stop all antibiotics for a period of 3 weeks i felt bad like i was going down hill fast but just being on some seems to stop that feeling of going down.I have really struggled with depression and that is one of the
things that it still helps which is good.
The antibiotics i take now i get from my family doctor and neuro combined which is kind of funny,
they are hard on the stomach but it's worth it for now s

[syckbastid]

Though I rarely post, I'm on this site daily, and I follow your story... Just wanted to say I'm inspired by your will, and hope a miracle meets your perseverance half-way.

[euphoniaa]

Though I rarely post, I'm on this site daily, and I follow your story... Just wanted to say I'm inspired by your will, and hope a miracle meets your perseverance half-way.

Well said, syckbastid. I'm sending healthy, hopeful thoughts to you too, robbie!

(Well, I actually post too much instead of rarely like syck does, but still the rest of the sentiment is the same... )
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[maynaka]

Robbie,

I, like many others, watched for your posts and prayed for your continued success with the abx.

I did the antibiotics for 1.5 years; unfortunately, my improvements were negligible. I salute you for taking two flagyl a day. I tolerated the recommended "pulse" every month, but was sick to my stomach the whole time.

The fact that you have showed no progression in the last year is fantastic! Additionally, for a neuro to state "no progression" is a major admission.

[leetz]

Started Wheldon protocol about 4 day's ago...so far, I am tolerating well...no flagyl pulses yet (in like 3 more weeks I will start)... so far

200 mg doxycycline (at night, for better toleration)
250mg azithromycin M W F

will also go back on LDN (will start low low dose for spasticity reasons) in about a week or so...not anything to report yet (way too early)...will have more I am sure after I pulse the flagyl...

[SarahLonglands]

Well, Robbie should know by now that I think he is amazing! However, one thing which applies to everyone taking antibiotics long term: don't forget the probiotics. Even live yoghurt or kefir counts as a probiotic. I took some every day and have never felt that things were hard on my stomach. Nor have ever had thrush, to most people's amazement.

Sarah

[leetz]

Just started LDN filler used is acidophilis...should that help for the yeast thing? anyho, thats what i am hoping for...o and think i am going to pulse in flagyl sooner because so far so good with tolerating the other two...thoughts? )

[SarahLonglands]

Leetz, I know you will be impatient but it really would be best not to start pulsing too soon. You might feel fine the first time but the second time is when it might hit you. I waited for three months and by then I tolerated everything well.

I don't now about LDN but anything containing good amounts of acidophilus is fine.

Sarah

[robbie]

do you think there is any chance that i became immune to the antibiotics i was taking and thats why i very slowly got worse while i was still taking them. now that i have stopped them completly i am going down hill faster, the flagyl and doxy don't have the same affect they had eariler on.could i try a different antibiotic that my system isn't use to, it's really hard to let go of how much better i felt without thinking there was something to them and how can i get back there. eventhough my mri's showed continued progression i don't care i just want to feel that way again.
my hands are having a good night so i am able to hit the keys better than some previous posts.