ABX Blog jak7ham9

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ABX Blog jak7ham9

Postby jak7ham9 » Sat Mar 15, 2008 5:44 am

I started abx on oct15,2007 so I am at the 5th month mark. I want to start a blog of my experiences changes improvements .
The first 2 months on doxy 200, azith 250mxf roxy150 bid
Nac 2400
The first week or two on doxy alone I had immunomodlatory improvement of walking which faded with additional abx. I must note here that I generally had improvement in walking at least during week of menses ,ok the week after and worsening thereafter.
The worst effects of die off the first 21/2 months were explosive diarhea 8O and fluish feelings, feverish exhaution, slept a lot
Thankfuly the poops have gone!!
I had urinary problems before starting abx wore pads and was geting worse. This has basically disappeared though sometimes returns to a lesser degree after flagyl, More of an urgency than uncontrollable
I added in rifampin feb red pee. I think this had a strong effect. My right hand has incresed in tightness. Both my feet and less my hand have swelling issues. I am dieing for the swelling prplish feet to go away for good. I was having a ton of cold proablems wuth feet and body temp. Spoke to Dr Stratton who suggested pyruvate 1 hr before abx this has helped a lot with cold. I am eating a lot of probiotics so have avoided yeast thus far. I have a voracious appetite. I have been sleeping a lot it is highly annouing to be so tight when you want to get things done. My kids have been very helpfull my brother has been cooking dinner and been babying me by delivering gatorade and water to my room when I am exhausted. Carbs make you feel better but I will admit I have started to get my vegetable salad and protein urge back.
I haven't had much sexual urge because have been feeling lousy aso hobbling doesn't make yo feel sexy but recently I have started thinking about it again whic I think is a good sign. I actually have this odd therory that orgasms have an antiinflammatory effect. I know when in first romantic year or so of my last significant other having sex often several times daily almost eliminated tightness/spasticity.
Now in some ways I feel the die off is casing greater inflammation and therefore leg tightness I just had my starter mri which I will post and I also wonder if the excess inflammation will cause greater enhancement. I also know that later mri will show improvement. My walking is tight tight better in am bad by late afternoon. I have added in treadmill. Started at 5 min on 1 and am now up to 15-20 and I add in #2 and started upping elevation. I think though I am tighter I have noticed my dropped foot on the other hand has been disappearing. I have not noticed catching my toe on anything or there is not any rub marks on the toes of my shoes! So though the tightness is worse obviously I am walking about but my muscles to lift the foot are better. I have had a lot neck aches one of the first symptoms I got years ago, My sinuses have also ached after this last pulse. My cognitive resoures are greatly improving. My one compaint is I stil have word immediate response problem (brain fart) where it takes me a minute to remember a specific word that I certainly know already. But my memory otherwise is great getting better and the mind is sharp analytical and gaining my business interest again.A lttle bit of woe is me after last pulse but in general upbeat. I have been hanging in my bed a lot more than normal but I am forcing myself up to treadmill now. I also will post blood results have to keep checking on liver for safety. I am hoping to see someimprovements in tightness in 8-12 months time. Also I am hoping to have less heat sensitivity by summer! Ther is no qestion in my mind that this protocol does work but it takes time and I am impatient!! Barbara
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Postby Loriyas » Sat Mar 15, 2008 6:36 am

Glad that you posted this Barbara! It helps to keep track of improvements this way.
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Postby MacKintosh » Sat Mar 15, 2008 7:33 am

A chronicle is a great idea, because this disease does funny things to memory, both short and long-term.

You're doing well. Taking care of yourself is important and you're being smart and fighting the urge to overdo it. Keep writing!
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
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Postby SarahLonglands » Sat Mar 15, 2008 9:21 am

Hello Barbara, I'm glad you have come to this quiet backwater to keep a blog. And a very humourous one at that! It will be easier to keep track of how you are improving here, because, be warned, if you have bouts of forgettory, I have an excellent memory for what other people have said or written and I won't let you get away with it!

Sarah :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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5th month abx had mri posting findings

Postby jak7ham9 » Mon Mar 17, 2008 11:21 am

Ok had an mri last week and I have a cd which I will attach and the write up. My last mri showed many small blobs (lesions) and there was some enhancement. Now this Mri with and without contrast says

History looking for MSi and abnormal gait

Multiplanar pulse sequences were obtained through the brain. The study was done with and without contrast. Postcontrast images were performes following 15cc of Optimark.

The venricles are midline. There is no hemorage or hematoma.

There is a small focal areaof hyperintensity ialong the left posterior peiventricular white matter and a small circular area of hyperintensity n the right trigone 0.8 in size. Neither of these areas show any enhancement . These findings are nonspecific.

There is no hemorrahage in these areas. The circular area is somewhat atypical for MS and the small periventricular hyperintensity is small and nonspecific.

I do not see any abnormality along the corpus callosum.

The brainstem and cerebellar structures are unremarkable.

I read from this that I have less blobs than before and that I have no enhancement (which I had before). Interesting in that I am only 5 months into the treatment also PLEASE NOTE i was in the middle of a flagyli pulse when this was taken (I had wondered if this would cause greater inflammationi therefore greater enhancement BUT IT DID NOT, also note they said atypical of ms (ie they wouldn't even necessiarily diagnose as ms) As soon as I figuere it out you will have copy of mri online. I believe this shows me it is in my best interest to stay on abxii protocol. My walking is still not fabulous. 8O Barbara
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Postby MacKintosh » Mon Mar 17, 2008 9:41 pm

SUCH good news! And it helps us see the pattern emerging of no unusual brain inflammation due to flagyl pulsing. You're the fourth person I'm sure of who's done an MRI during flagyl and had nothing unusual show up, besides improvement, that is. YAY!
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
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Postby SarahLonglands » Tue Mar 18, 2008 3:39 am

Yup, I am one of those four and I did it twice!

Excellent news Barbara. Maybe he comment meant that your lesions had improved so much that if only this scan was seen, it could not be said for certain that you have MS, whereas look at a previous one, you did? My initial big improvement came after six months. Your walking will improve with remyelination or rerouting, it just takes time.

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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how long for spasticity to wane

Postby jak7ham9 » Tue Mar 18, 2008 4:54 am

Sarah I am glad I showed no progression! But how loooooong do you think it will take for this highly annoying tightness and restrictive hobbling to fade!I hate to whine but I want to move about and get things done .I think the die off makes inflammation/tightness worse as year ago i had periods walking up and down stairs no hands not now. Growl snarl whine. I still get on and slug-like away at the tredmill! on a good note no real colds or flu this year except die off. I really need to build up the legs!
whining barbara
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Postby Loriyas » Tue Mar 18, 2008 8:05 am

Barbara
The frustration you have is actually a good thing! It shows that you feel well enough to do things. If you didn't fell well you wouldn't care if you could move or not. I suspect it will just get better and better for you. Once again, we see pieces of our old selves and want it all back NOW!! It is hard to have patience when things are improving. But this is so much better than the alternative!
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Postby SarahLonglands » Tue Mar 18, 2008 8:23 am

Lori is right, you know. When I first started I thought that within a year I would be back to climbing up mountains or walking thirty miles a day, no problem. Now the restrictive tightness has largely gone, but even making myself walk three miles takes forever since I have to keep stopping to sit down.

I get frustrated, but its a good thing to get frustrated: when I was at my worse, I thought that there was nothing wrong with me, even when I could hardly walk at all. I didn't get frustrated, though!

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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walking

Postby jak7ham9 » Tue Mar 18, 2008 1:40 pm

sarah if I could walk half a mile I would be deighted. whine whine but I will keep plugging along Barbara
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Postby SarahLonglands » Tue Mar 18, 2008 3:14 pm

But that's with two trekking poles and what used to take about 40 minutes takes three hours! But at my worst I couldn't walk across the dining room without launching myself from the mantlepiece and hoping I landed on a dining chair.

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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