Gibbledygook's antibiotic log

[SarahLonglands]

Colin, that's very true: the only things that I have lost absolutely are the last to develop, whereas I have had MS since about 24. The trouble with my right arm was the last thing to really develop, but I had been foot dapping with my right leg for years. I didn't always do it, but as time went on, it came on quicker. I would try to disguise it to convince myself as much as anyone that there was nothing wrong.

Now I only take antibiotics for two weeks every three months, but I am still slowly improving. Something stressful can suddenly make me a lot worse, but only for a while. The new pathways aren't quite as fast as the original ones and stress or shock throws them out of kilter for a while.

Sarah

[SarahLonglands]

Robbie, sorry, I didn't see you because the page had changed over. It does depend where your damage is to start with, as to how much and how quickly you can recover. I never had any spinal damage, except a very little and very recent in the cervical spine and although my walking had been getting more and more impaired over a number of years, I was only reduced to 100 metres very recently before starting abx. Tell you what, read through my updates in this section and ask me any questions that occur to you there, or PM me.

Sarah

[gibbledygook]

Robbie, you should maybe consider the antibiotics. I've been rather disappointed by the antibiotics but they do seem to have stopped me getting any worse and with this disease this is a major breakthrough. I had greedily hoped that I would get better after quite a few people on antibiotics reported radical improvements. However this is clearly not the case for everyone.

Hell, if I were 7 on the EDSS I'd try antibiotics, statins, LDN and weed! I tried diet to no avail so I reckon one needs stronger meds than just avoiding cow fat.

[robbie]

hi , have tried ldn ,diet, and smoke the weed every night,it"s my escape from this. Tried to get Lipitor last week with no luck. Need to see the doc that gave me the ldn he might be a little more open to the statins and maybe the antibiotics but its to hard right now so maybe in the spring.You read such good things about stuff but is it real, for some it must be.

[Notdoneyet]

Gibbledygook,
I apologize for getting on your thread and spouting off without even saying hello. Hello, glad to hear you are doing well and I'm always eager to read of your next great adventure. Sarah, the antibiotics may stop the MS from progressing and maybe clear up a few recent symptoms, but the rest of the progress is won by hard work and sticking to it. Way to go.

Colin

[robbie]

Way to go everyone...

[wiggy]

Robbie,
I am with Alex - nothing to lose only to gain with abx....
If you need to get information together to discuss with a doctor go to CPn Help dot org and start gathering information. My EDSS is over 6 and I started abx 04/06. I had MS for over 10 years.

I am not walking consistently better but brain fog, writing, fine moter skills, balance and spastic muscles are better. I will not be able to walk unaided until my balance is even better then it is now - but just happy to be moving in that direction.

I would go with the LDN doctor as I am also on LDN and it was not easy to obtain that script and it is all hard - I hear you.

Do you want to wait until Spring due to the weather? I have a hard time with snow and ice and understand that so I find someone to go with me in the Winter.

[gibbledygook]

Here is the radiologist's report which I got back from my neurologist today.

"MRI HEAD: SAG T1 FAST SPGR, AX T2 FAST SPIN ECHO, COR FAST FLAIR, COR T1 SPIN ECHO, MAGNEVIST, COR T1 SPIN ECHO, AX T1 FAST SPGR

Comparison is made with the previous MRI of 09/March/2004.

As before there are multiple T2 hyperintense lesions in the periventricular and juxta cortical white matter.

There has been no change in lesion load and there are no enhancing lesions.

MRI CERVICAL SPINE: SAG T1 FSE, SAG T2 FSE, AX T1 FAST SPIN ECHO

The T2 hyperintense lesion in the cervical spine is no better defined and smaller extending from C3 to C4 levels.

There is also a reduction in cord diameter at this level compared to the previous study. The residual T2 hyper/T1 hypointense area involves predominantly the posterior columns and does not enhance.

The lesion in the upper thoracic spine is also less extensive.

COMMENT
The appearances are consistent with chronic and not with acute demyelinating lesions."

I wasn't too happy about the "reduction in cord diameter" but my neurologist said that the cord from 04 was swollen. He also said that I should carry on with the antibiotics and "whatever else it is that I am doing" since the 04 MRI scan showed a very active disease state whereas I have now clearly and demonstrably stabilized. I suggested that this was because of the 3 days of prednisone I had in December 04 but he dismissed these as being of only temporary effectiveness. He seemed extremely pleased for me.

[SarahLonglands]

Now, Alex, that is such good news! I think you and your partner might be allowed a little celebration tonight, especially it being February 14th. No dancing on that torn tendon, though.

Sarah

[Notdoneyet]

FANTASTIC!!! Congratulations.

[wiggy]

Alex,
Wonderful News!!!!!!!!!!!!

[gibbledygook]

Thanks everyone!! It's very encouraging that the scans were potentially supportive of the antibiotic treatment protocol. It was also very surprising to hear my rather cynical, (depressed?), anti-snakeoil neurologist tell me to carry on taking the antibiotics.
I will take a scan every 2 years (subject to bank balance) to keep a log of the brain's deterioration/improvement.
I shall ski again.

[wiggy]

I am planning on skiing again too - count me in

[gibbledygook]

God - wouldn't it be great even to contemplate being in a snowy, icy resort?! I grew up in France so could ski down icy black runs on my own although I never mastered off-piste skiing. I would so love to be able to ski again but even walking a child to their school would be nice...fingers crossed.

[wiggy]

Skiing would be great - I was never that good but it was so much fun. Walking a child to school would be even better!