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Dear Roy

Wonderful news that your fatigue is diminished! I actually got a chill when I read that. With me it was the very first sign that something was changing. It may have happened earlier. I had no idea at all what if anything would happen because I didn't have the people here to trade ideas with. It was 8 months before it came home to me and I never went to the MS sites in the US- they were sympathy based and I just could not accept that.

As for knee swelling, I find that very interesting. I have a friend with RA who told me a few years ago before I knew any of all this abx stull. I will call him and send him to this site. My knees never hurt, but my hips did for almost a year and probably longer but I am good at ignoring things I can't do anything about. However, they got so bad last winter and spring I could no longer ignore them. In the last month or so, the ache just went away.

Roy, keep us posted about your wife. You don't deserve a double whammy like that.

Rica

Hello Roy,

One other thing, my wife has allot of the symptoms of MS but the Doc's at Vandy tells us that it’s not MS and that’s she is a mystery. She has decided that she would like to try the abx. Should I start her out w/ half the dose and work her up to the full dose, as always your comments are welcome.

This is very interesting because over the last couple of years David has treated quite a few people with unexplained neurological problems, largely with good results. I would definitely encourage your wife to try abx. He normally starts people off on the full dose of doxycycline and rifampicin or azithromycin, but is she finds this too agonising, lower the dose. Make sure she doesn't skip on the adjuncts, though. Lots of women do, thinking that they are just wasting money which could be used for other things.

To everyone else, now, before starting treatment I used to suffer for a while with very swollen ankles and knees as well, sometimes. Not much pain, though, more of a burning sensation as pinda says. I was always very pliable and as kitkat says, loose jointed, but this went. I put it all down to something else, nothing to do with MS, which is why I never mentioned it before. I think I must have been wrong, though, because all the swelling and burning has now gone and I am getting back to be as flexible as before. Strange.

Sarah

Anecdote wrote:
To everyone else, now, before starting treatment I used to suffer for a while with very swollen ankles and knees as well, sometimes. Not much pain, though, more of a burning sensation as pinda says. I was always very pliable and as kitkat says, loose jointed, but this went. I put it all down to something else, nothing to do with MS, which is why I never mentioned it before. I think I must have been wrong, though, because all the swelling and burning has now gone and I am getting back to be as flexible as before. Strange.

Sarah

Any time you have swelling that can't be explained see your doctor this is not normal. Swelling in the ankles can be serious don't think because you have MS it is related.Now it could be but always check with your doctor
Swollen Ankles
Swollen ankles are a common symptom for those who have had to limit their activity. In most instances, the swelling is actually lymphatic fluid which builds up around the ankle when inactivity prevents the fluid from circulating within the body.

Lymphatic fluid normally flows along lymphatic channels, delivering nutrients and other important substances to the body's organs. Swollen ankles may worsen during the summer as heat causes these channels to dilate (expand).

Diuretics, also known as "water pills," do not affect this type of fluid buildup. The standard treatment is to elevate the ankles above the hip level while sitting during the day and keeping them above the heart level throughout the night. This will pull the fluid back toward the body. Additionally, support stockings may help to prevent further fluid accumulation.

Anyone who experiences swollen ankles should always contact a physician to confirm the exact diagnosis. Other conditions, such as heart trouble, thrombophlebitis (blood vessel inflammation), or nutritional deficits, should first be ruled out before blaming inactivity.

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Melody, you are very well meaning, but I wasn't putting this down to inactivity: that has never been one of my problems, nor kitkat's I would surmise. I live with the best physician any could wish for and he can certainly verify my lack of inactivity. Even when I could hardly walk to the front gate I would get on the treadmill every day, because I didn't want to get fat.

Very few people put everything down to MS.

Sarah, who also never failed to top up on her probiotics every evening.

Hey Roy,

I totally disagree with you that there is not much to report. Having clear mind and being not tired is a huge step forward, especially after going downhill so promptly. Taking Lipitor every other day is also a good idea, many people use it this way with pleasing results.

Treating swollen joints with doxycyline is an acknowledged new way of treating the osteoarthritis. It was a smart decision. http://www.medscape.com/viewarticle/509929?src=mp

Wishing you both the best
Barbara

Hello folks,

This morning something’s that has left home may have started returning home.

I haven't been able to snap my fingers for the past 6 to 7 months. This morning my wife has a house cat and it was getting in into her jewelry box and I was able to snap my fingers at it. That cat thought it had hear a ghost, as it’s been several months since it’s hear that sound. My left hand is more pronounced then my right but all in time.

Later on this morning I was watching a movie, I believe it was Hollywood Homicide, and could actually follow the plot somewhat and was laughing @ it too. I thought wow.

Thanks to everyone for your posts I find all this interesting.

Sarah, we're going to start Terry on the abx today @ half dose to start with. If she does ok w/ it than we'll get her up to the full dose pretty quickly. We'll keep you posted on her progress.

Thanks again Ice for the heads-up about this site. its info and the folks I've meet has been great. I checked out the site that you posted, Medcape, that was interesting

Nothing ventured nothing gained.

Roy

Roy, the therapy is working for you!
B.

Hello Barbara'

Yes I think it is too. Can't wait to start the flagg to see what happens. Famous last words.

Roy

Hello folks

Received a phone call from my Vandy Doc's this morning. They are wanting to start me on their abx. Wish they had mentioned this three years ago.

Hello folks,

Received my results of the spinal tap this AM. They were negative for CPN.
No surprise I guess.

Made the switch a couple weeks ago to Vandy's protocol. No particular reason but my Vandy Doc's agreed to put me on it and I accepted. Wish they had done this 3 years ago though.

I was about 6 weeks into Dr. Weldon's protocol when I made the swap.

Nothing else new.

Roy

Let us know what your Vandy docs are using for your protocol. Be good to have a real life update on the current thing!

Hello Folks,

I let my granddaughter log me off yesterday, somehow she managed to deleted the previous post. Anyway here it is again. Find below the protocol that I'm on.

Start with Rifampin 300mg twice daily for two weeks.

After two weeks add Azithromycin 500mg every other day along with Rifampin.

After 4 weeks add, Flagyl, 500mg three times daily for 7 days, every month along with Azithromycin and Rifampin


Roy

Hello folks,

How's everyone?

In the last couple days I've have two new sensations, one is my eyes have a burning sensation and also my left foot feels like someone is holding a match to it. The eyes is usally late afternoon or early evening lasting till bedtime. The foot thing is after I lay down @night and lasting a hour or so. Anybody have anything similar?


Roy

I definitely hear you on the burning eyes. Dry, too. I don't have the foot burn that so many have mentioned, however I do notice a bit of swelling in my feet.

Eyes tired but not dry, but then eyes have never been my problem. Feet are another matter, though. I lost the numbness after a couple of months into treatment, but this was then replaced by a rather too acute sensitivity to anything underfoot and a burning feeling in my toes which was much worse in the evening. Two years on it is only somewhat better, but all the swelling in my knees and ankles has completely gone.

Sarah